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Sample records for life caregiving appraisal

  1. Development and Validation of a Scale for the End of Life Caregiving Appraisal

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    JuHee Lee, PhD, RN

    2010-03-01

    Conclusion: Nurses and other healthcare professionals could use the EOLCAS to assess the experiences of EOL caregivers to understand their experience in the EOL and enhance their quality of life although psychometrics of EOLCAS shows limited findings.

  2. Effects of stress appraisal on the quality of life of adult patients with multiple myeloma and their primary family caregivers in Korea.

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    La, In Seo; Yun, Eun Kyoung

    2017-10-01

    Modern treatment for multiple myeloma (MM) has improved disease control and prolonged survival; thus, maintenance of quality of life (QoL) is considered a great concern for MM patients and their caregivers. The purpose of this study was to identify dyadic associations between stress appraisal and the QoL of patients with MM and their caregivers in Korea. A total of 102 MM patient-caregiver dyads participated in this study. They independently reported their stress appraisal and QoL. The study was guided by a transactional model of stress and coping, and analyzed by using the actor-partner interdependence model. The results revealed good data adjustment with acceptable indices: χ 2  = 6.211 (df = 6), CFI = 0.999, TLI = 0.994, RMSEA = 0.019, and SRMR = 0.043. MM patients' QoL were significantly correlated with caregivers' QoL. The stress appraisals of patients and caregivers mutually influenced each other's QoL. The patients' illness perception and the caregivers' burden were strong predictors for their QoL. The self-efficacy of patients and caregivers was also associated with their QoL. Our findings suggest that the way patients and caregivers perceive and respond to stress plays a significant role in their QoL during the treatment experience. Interventions designed to reconstruct negative perspectives and improve self-efficacy may help both patients and caregivers to improve their QoL. Copyright © 2016 John Wiley & Sons, Ltd.

  3. Caregiving Appraisal in Family Caregivers of Older Adults

    Directory of Open Access Journals (Sweden)

    Akram Farhadi

    2016-04-01

    Conclusion: Caregiving appraisal is a multidimensional concept, which has positive and negative aspects. By taking into account all aspects of this concept, one can better understand and ultimately has a more comprehensive assessment of the status of caregivers, and implement effective interventions towards improving the health of this group.

  4. [Impact of the positive appraisal of care on quality of life, purpose in life, and will to continue care among Japanese family caregivers of older adults: analysis by kinship type].

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    Yamamoto-Mitani, Noriko; Ishigaki, Kazuko; Kuniyoshi, Midori; Kawahara-Maekawa, Noriko; Hasegawa, Kiyomi; Hayashi, Kunihiko; Sugishita, Chieko

    2002-07-01

    The impact of positive appraisal of care (PAC) on the caregiver's quality of life (QL), sense of purpose in life (sense of ikigai) and will to continue care was examined. Data were collected from 322 Japanese family caregivers of older adults who were using visiting nursing services through 21 facilities in the Tokyo metropolitan area, and the prefectures of Shizuoka, Mie and Okinawa. The data were grouped by kinship type (husband or son, wife, daughter or daughter-in-law) and analyzed separately. From the multiple regression and logistic regression analyses, the following results were derived: 1) The PAC was not related to the physical QL regardless of the relationship type; 2) The relationship depended upon the relationship type: only the PAC was related to the mental QL among husband and son caregivers, both the PAC and the negative appraisal of care (NAC) were important among wives, only the NAC among daughters, and none of them among daughters-in-law; 3) Both the PAC and NAC were related to the sense of ikigai in all caregiver types except among husband and son caregivers, which showed no relationship between the NAC and sense of ikigai; 4) Both the PAC and NAC were related to will to continue care among son and husband caregivers, whereas only the PAC was among wives and daughters-in-law. Only the NAC was related among daughters. However, the difference across kinship type seems minimal for will to continue care. Understanding the PAC among family caregivers may be important in order to better assist them to improve their mental QL or sense of ikigai as well as to predict their continuation of caregiving at home. The impact of PAC varies depending on the kinship type, and it should be assessed separately with reference to this pariable to develop plans for appropriate assistance.

  5. The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator.

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    Liu, Hsin-Yi; Huang, Lian-Hua

    2018-04-01

    The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

  6. Family Typology and Appraisal of Preschoolers' Behavior by Female Caregivers.

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    Coke, Sallie P; Moore, Leslie C

    2015-01-01

    Children with vulnerable caregivers may be at risk for being labeled as having behavior problems when typical behaviors are viewed by their caregivers as problematic, and therefore, research examining the accuracy of the caregivers' perceptions of children's behaviors is needed. The purpose of this study was to use the resiliency model of family stress, adjustment, and adaptation as the theoretical foundation to explore family factors associated with the primary female caregiver's appraisal of her child's behavior, the extent to which the primary female caregiver's appraisal of her child's behavior may be distorted, and the child's level of risk of having a behavioral problem. A cross-sectional, correlational design was used. Data were collected from female caregivers of preschoolers (N = 117). Family factors, demographic characteristics, comfort in parenting, appraisal of behaviors, daily stress, parenting stress, depressive symptoms, social support, ratings of children's behaviors, and distortion in the ratings were measured. Associations were studied using ANOVA, ANCOVA, and chi-squared tests. Family typology was not associated with the female caregiver's appraisals of her child's behavior (p = .31). Distortion of the caregiver's rating of her child's behavior was not associated with family hardiness (high or low; p = .20.) but was associated with having a child with an elevated risk for behavioral problems (p < .01). Families classified as vulnerable were significantly more likely to have a child with elevated risks of having behavioral problems than families classified as secure or regenerative. Findings emphasized the association between family factors (hardiness and coherence) and young children's behaviors. Additional research is needed into how these factors affect the young child's behavior and what causes a caregiver to have a distorted view of her child's behavior.

  7. Relationships between appraisals of caregiver communication strategies and burden among spouses and adult children.

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    Savundranayagam, Marie Y; Orange, J B

    2011-11-01

    The purpose of this study was to investigate the impact of caregivers' appraisals of the effectiveness of their own communication strategies on caregiver burden when caring for family members with Alzheimer's disease (AD). Family caregivers (N = 84) of participants with AD completed questionnaires appraising communication strategies, problem behaviors, and levels of three types of burden. Hierarchical linear regression models revealed that effective strategies and kinship status were significantly linked with stress burden, whereas effective strategies and problem behaviors were significantly related to relationship burden. Cognitive status of participants with AD significantly predicted objective burden. Caregivers who rated effective strategies as helpful were more likely to experience lower levels of stress and relationship burden. Findings provide preliminary support for understanding mechanisms by which the appraisals of communication strategies influence caregiver burden and justify testing empirically derived communication interventions.

  8. Otitis Media and Caregiver Quality of Life

    DEFF Research Database (Denmark)

    Heidemann, Christian Hamilton; Godballe, Christian; Kjeldsen, Anette Drøhse

    2014-01-01

    OBJECTIVE: Otitis media in children may have a considerable impact on caregiver quality of life. The disease-specific Caregiver Impact Questionnaire is designed to assess caregiver quality of life in relation to child otitis media. Assessment of the psychometric properties of this instrument...... is limited. This study assesses the psychometric properties of this instrument including validity, reproducibility, responsiveness, and interpretability. STUDY DESIGN: Longitudinal validation study. SETTING: Secondary care units. METHODS: Analyses were based on data from 435 families. Validity was assessed...... Danish version of the Caregiver Impact Questionnaire is a valid and reproducible measurement tool that is also sensitive to measuring change in the current setting. A change score representing minimal important change as perceived by the respondent is proposed. Results of this study support the use...

  9. Burden and Cognitive Appraisal of Stroke Survivors' Informal Caregivers: An Assessment of Depression Model With Mediating and Moderating Effects.

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    Tsai, Yi-Chen; Pai, Hsiang-Chu

    2016-04-01

    This study proposes and evaluates a model of depression that concerns the role of burden and cognitive appraisal as mediators or moderators of outcomes among stroke survivor caregivers. A total of 105 informal caregivers of stroke survivor completed the self-report measures of Caregiver Burden Inventory, Center for Epidemiologic Studies Depression Scale, and Cognitive Impact of Appraisal Scale. The Glasgow Coma Scale and Barthel Index were used by the researcher to examine the physical functional status of the survivor. Partial least squares (PLS) path modeling was used to estimate the parameters of a depression model that included mediating or moderating effects. The model shows that burden and impact of cognitive appraisal have a significant direct and indirect impact on depression, while survivor physical functional status does not have a direct impact. The model also demonstrates that burden and impact of cognitive appraisal separately play a mediating role between survivor physical functional status and caregiver depression. In addition, cognitive appraisal has a moderating influence on the relationship between burden and depression. Overall, survivor physical functional status, burden, and cognitive appraisal were the predictors of caregiver depression, explaining 47.1% of the variance. This study has shown that burden and cognitive appraisal are mediators that more fully explain the relationship between patient severity and caregiver depression. Copyright © 2015 Elsevier Inc. All rights reserved.

  10. Matched and mismatched appraisals of the effectiveness of communication strategies by family caregivers of persons with Alzheimer's disease.

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    Savundranayagam, Marie Y; Orange, J B

    2014-01-01

    Communication problems stemming from Alzheimer's disease (AD) often result in misunderstandings that can be linked with problem behaviours and increased caregiver stress. Moreover, these communication breakdowns also can result either from caregivers' use of ineffective communication strategies, which paradoxically are perceived as helpful, or can occur as a result of not using effective communication strategies that are perceived as unhelpful. The two primary aims were to determine the effectiveness of strategies used to resolve communication breakdowns and to examine whether caregivers' ratings of strategy effectiveness were consistent with evidence from video-recorded conversations and with effective communication strategies documented in the literature. Twenty-eight mealtime conversations were recorded using a sample of 15 dyads consisting of individuals with early, middle and late clinical-stage AD and their family caregivers. Conversations were analysed using the trouble-source repair paradigm to identify the communication strategies used by caregivers to resolve breakdowns. Family caregivers also rated the helpfulness of communication strategies used to resolve breakdowns. Analyses were conducted to assess the overlap or match between the use and appraisals of the helpfulness of communication strategies. Matched and mismatched appraisals of communication strategies varied across stages of AD. Matched appraisals by caregivers of persons with early-stage AD were observed for 68% of 22 communication strategies, whereas caregivers of persons with middle- and late-stage AD had matched appraisals for 45% and 55% of the strategies, respectively. Moreover, caregivers of persons with early-stage AD had matched appraisals over and above making matched appraisals by chance alone, compared with caregivers of persons in middle- and late-stage AD. Mismatches illustrate the need for communication education and training, particularly to establish empirically derived

  11. Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring.

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    Totsika, Vasiliki; Hastings, Richard P; Vagenas, Dimitrios

    2017-05-01

    There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors. © 2016 John Wiley & Sons Ltd.

  12. Life Course Stage and Social Support Mobilization for End-of-Life Caregivers.

    Science.gov (United States)

    LaValley, Susan A; Gage-Bouchard, Elizabeth A

    2018-04-01

    Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.

  13. Cancer Communication and Family Caregiver Quality of Life

    Directory of Open Access Journals (Sweden)

    Elaine Wittenberg

    2017-03-01

    Full Text Available Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care.

  14. Caregiver Life Satisfaction: Relationship to Youth Symptom Severity through Treatment

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    Athay, M. Michele

    2012-01-01

    This study utilized the Satisfaction with Life Scale to investigate the life satisfaction of caregivers for youth receiving mental health services (N = 383). Specifically, this study assessed how caregiver life satisfaction relates to youth symptom severity throughout treatment. Hierarchical linear modeling with a time-varying covariate was used…

  15. The mediating effect of caregiver burden on the caregivers' quality of life.

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    Jeong, Yeon-Gyu; Jeong, Yeon-Jae; Kim, Won-Cheol; Kim, Jeong-Soo

    2015-05-01

    [Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver's QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers' QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers' QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers' well-being.

  16. [Ressignification of life of caregivers of elderly patients with cancer].

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    dos Anjos, Anna Cláudia Yokoyama; Zago, Márcia Maria Fontão

    2014-01-01

    The study aimed to analyze the process of becoming a caregiver of elderly patients with cancer, in chemotherapy, in the home context. This is an exploratory study with theoretical and methodological orientation of interpretative anthropology and ethnographic case study. Data were collected from January to September 2009, with four caregivers through semi-structured interviews, observation and consultation records. With data analysis were built four units of meaning. In this paper 'we are focusing the thematic unity "The ressignification of caregiver's life", composed by positive aspects of caregiving activities and of helping to overcome difficulties, such as union, solidarity, opportunity for reapproximation. The difficulties were more evident, especially being unprepared to care at home, which led to changes in the caregiver's familiar and social relationships, resulting in impairment of physical, emotional and social aspects. The nurse, as an agent of care, must provide adequate qualification to the caregivers, helping them in coping with the disease and improving the patient-caregiver-service relationship.

  17. Social support moderates caregiver life satisfaction following traumatic brain injury.

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    Ergh, Tanya C; Hanks, Robin A; Rapport, Lisa J; Coleman, Renee D

    2003-12-01

    Social support is an important determinant of adjustment following traumatic brain injury (TBI) sustained by a family member. The present study examined the extent to which social support moderates the influence of characteristics of the person with injury on caregiver subjective well-being. Sixty pairs of individuals who had sustained a moderate to severe TBI and their caregivers (N=120) participated. Years postinjury ranged from 0.3 to 9.9 ( M=4.8, SD=2.6). Cognitive, functional, and neurobehavioral functioning of participants with TBI were assessed using neuropsychological tests and rating scales. Caregiver life satisfaction and perceived social support were assessed using self-report questionnaires. Results indicated that time since injury was unrelated to life satisfaction. Neurobehavioral disturbances showed an inverse relation with life satisfaction. Social support emerged as an important moderator of life satisfaction. Only among caregivers with low social support was cognitive dysfunction adversely related to life satisfaction. Similarly, a trend suggested that patient unawareness of deficit was associated with caregiver life dissatisfaction only among caregivers with low social support. In contrast, these characteristics were unrelated to life satisfaction among caregivers with adequate social support.

  18. Caregiver Burden, Quality Of Life And Vulnerability Towards Psychopathology In Caregivers Of Patients With Dementia/alzheimer's Disease

    International Nuclear Information System (INIS)

    Dawood, S.

    2016-01-01

    Objective: To identify caregivers' burden, evaluate quality of life in them; and predict anxiety and depression in caregivers of patients with Alzheimer's disease (AD). Study Design: Cross-sectional study. Place and Duration of Study: Neurology and Psychiatry Department of Lahore General Hospital (LGH), from January to December, 2013. Methodology: A purposive sample of 60 caregivers, who had been taking care of patients with AD for more than one year, were recruited from the study centre. The Zarit Burden Interview was used to assess caregiver burden. The brief version of World Health Organization Quality of Life Scale to assess quality of life and anxiety and depression subscales of symptom checklist-revised were administered to assess caregivers' vulnerability towards psychopathology. Results: There were 6 males and 54 females caregivers with mean age of 37.60 ± 14.87 years. The burden of caregiving had negative relationship (-0.57; -0.50; -0.48; and -0.50, respectively) with physical, psychological, social, and environmental domains of quality of life. Neither caregiver burden nor quality of life predicted for anxiety and depression in the caregivers. Conclusion: Caregiver burden may impair quality of life of caregivers but results imply the need to identify the interpersonal and intrapersonal characteristics of caregivers that buffered the adverse effects of caregiver burden and impaired the quality of life on psychological well being of the patients with AD. (author)

  19. Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates.

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    Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon

    2015-08-01

    Family caregivers of cancer patients become responsible for many elements of cancer care, usually without preparation or training in provision of care. Their efforts of care generate caregiving burden, which could deteriorate caregivers' quality of life (QOL). A secondary data analysis of a cross-sectional descriptive study was conducted to describe the influence of caregiving burden on the QOL of family caregivers of cancer patients with consideration of correlates (N = 212). The Korean versions of Zarit Burden Interview and the World Health Organization QOL BREF were used. Multiple regression analyses were applied to analyze the relationship between the caregiving burden and QOL. Caregiving burden explained 30.3% of variance of the QOL (β = -0.534, p < 0.001). Caregivers caring for patients with functional deterioration experienced higher burden. Caregivers providing care for hospitalized patients demonstrated lower QOL. The caregiver's educational level was a positively contributing factor for the QOL. Caregiving burden was the influential, negatively affecting factor for the QOL. Assessment of caregiving burden with special attention being paid to caregivers caring for patients with functional decline would help to identify caregivers in need of support. Supportive care needs to be sought to alleviate caregiving burden and improve the QOL of caregivers, especially for the caregivers of hospitalized patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

  20. Stressors and life goals of caregivers of individuals with disabilities.

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    Raver, Sharon A; Michalek, Anne P M; Gillespie, Amy M

    2011-01-01

    Caregivers of individuals with disabilities can experience stress as they manage caregiving responsibilities while they attempt to balance family, work, and the satisfaction of their personal goals. In this pilot study, 31 caregivers of individuals with a variety of disabilities completed a quantitative-qualitative survey. A statistically significant relationship was found between the age and severity of disability of the family member receiving care, the length of time care had been provided, the educational level and the relationship of the caregiver to the family member and reported feelings of optimism, humbleness, quality of family relationships, financial concerns, loss of control, and hope. When life goals were probed, the most common reported were achieving financial stability, having a strong, healthy family, and experiencing happiness. The implications for supporting caregivers and their families are discussed.

  1. Relationships between quality of life and family function in caregiver

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    Gómez-Marcos Manuel Á

    2011-04-01

    Full Text Available Abstract Background There are caregivers who see their quality of life (QoL impaired due to the demands of their caregiving tasks, while others manage to adapt and overcome the crises successfully. The influence of the family function in the main caregiver's situation has not been the subject of much evaluation. The aim of this study is to analyse the relationship between the functionality of the family and the QoL of caregivers of dependent relatives. Methods We conducted a cross-sectional study including 153 caregivers. Setting: Two health centers in the city of Salamanca(Spain. Caregiver variables analysed: demographic characteristics, care recipient features; family functionality (Family APGAR-Q and QoL (Ruiz-Baca-Q perceived by the caregiver. Five multiple regressions are performed considering global QoL and each of the four QoL dimensions as dependent variables. The Canonical Correspondence Analysis (CCA was used to study the influence of the family function questionnaire on QoL. Results Family function is the only one of the variables evaluated that presented an association both with global QoL and with each of the four individual dimensions (p Conclusion We find an association between family functionality and the caregiver's QoL. This relation holds for both the global measure of QoL and each of its four individual dimensions.

  2. A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: a randomised clinical trial.

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    Belgacem, Bénédicte; Auclair, Candy; Fedor, Marie-Christine; Brugnon, David; Blanquet, Marie; Tournilhac, Olivier; Gerbaud, Laurent

    2013-12-01

    The French setting, including laws and guidelines, advocates greater involvement of informal caregivers in the care of cancer patients to protect the caregivers from depression, distress, and a decrease in their quality of life. This study aimed to assess the efficacy of a caregiver educational programme by measuring two outcomes: patients' and caregivers' quality of life and caregivers' burden. A multicentre randomised controlled trial was performed in six oncology wards in French hospitals. Eligible patients had a cancer, a main caregiver, allowed their caregivers' involvement, and received an inclusion agreement by a doctor/psychologist dyad. The experimental group participated in an educational programme performed by nurses to improve their skills in meal support, nursing care, welfare care, or symptom management. The SF36 and the Zarit burden scales were used to measure quality of life and caregivers' burden at the beginning and at the end of the study. 67 patients were randomised and 33 were included in the experimental group. Evolution scores, which measured the difference between baseline and final scores, showed an improvement in patients' and caregivers' quality of life and an alleviated burden for experimental group caregivers. An educational programme for caregivers encourages the involvement of patients, informal caregivers and health-care providers in a triangular relationship which enhances the quality of life of patients and caregivers alike and decreases caregivers' burden. Care organisation should therefore be rethought as a triangular relationship between patients, caregivers and health-care providers, with nurses as the mainstay. Copyright © 2013 Elsevier Ltd. All rights reserved.

  3. Quality of life in caregivers providing care for lung transplant candidates.

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    Lefaiver, Cheryl A; Keough, Vicki A; Letizia, Marijo; Lanuza, Dorothy M

    2009-06-01

    Caregivers are essential members of the health care team who provide care, valued at more than $250 billion each year, to millions of persons who require assistance with health and daily care. Patients with respiratory diseases who are waiting for a lung transplant are required to have an identified caregiver. The caregivers are rarely studied. To explore the relationships among the health status of caregivers of lung transplant candidates, caregivers' reaction to caregiving, and caregivers' perceived quality of life. This descriptive study examined the quality of life of lung transplant caregivers from a multidimensional perspective. Twenty-nine dyads of lung transplant candidates and their caregivers were recruited from a Midwestern medical center. Data were collected by self-report: caregivers completed the Quality of Life Index, SF-12 health survey, Profile of Mood States-Short Form, and the Caregiver Reaction Assessment. Caregivers reported favorable levels of quality of life, physical health, and mood during the pretransplant waiting phase. However, problem areas for caregivers during this time included fatigue, depression, and the financial impact of the transplant. Data analyses indicated that depression, caregiver general health, impact on finances, and lack of family support had the greatest effect on caregivers' quality of life. Nurses are urged to recognize the role of caregivers in the transplant process, ask about and listen to caregivers' needs, and include caregivers in the plan of care.

  4. Variances in family carers' quality of life based on selected relationship and caregiving indicators: A quantitative secondary analysis.

    Science.gov (United States)

    Naef, Rahel; Hediger, Hannele; Imhof, Lorenz; Mahrer-Imhof, Romy

    2017-06-01

    To determine subgroups of family carers based on family relational and caregiving variables and to explore group differences in relation to selected carer outcomes. Family caregiving in later life holds a myriad of positive and negative outcomes for family members' well-being. However, factors that constitute family carers' experience and explain variances are less well understood. A secondary data analysis using cross-sectional data from a controlled randomised trial with community-dwelling people 80 years or older and their families. A total of 277 paired data sets of older persons and their family carers were included into the analysis. Data were collected via mailed questionnaires and a geriatric nursing assessment. A two-step cluster analysis was performed to determine subgroups. To discern group differences, appropriate tests for differences with Bonferroni correction were used. Two family carer groups were identified. The low-intensity caregiver group (57% of carers) reported high relationship quality and self-perceived ease of caregiving. In contrast, the high-intensity caregiver group (43% of carers) experienced significantly lower relationship quality, felt less prepared and appraised caregiving as more difficult, time intensive and burdensome. The latter cared for older, frailer and more dependent octogenarians and had significantly lower levels of quality of life and self-perceived health compared to the low-intensity caregiver group. A combination of family relational and caregiving variables differentiates those at risk for adverse outcomes. Family carers of frailer older people tend to experience higher strain, lower relationship quality and ability to work together as a family. Nurses should explicitly assess family carer needs, in particular when older persons are frail. Family carer support interventions should address caregiving preparedness, demand and burden, as well as concerns situated in the relationship. © 2016 John Wiley & Sons Ltd.

  5. Appraisal Of Quality Of Life Of Diabetic Patients, Including Life ...

    African Journals Online (AJOL)

    The review showed that patients with diabetes mellitus had signi cantly low ... of life (physical health, psychological health, social relations, and environment). ... of quality of life regarding gender, age, or the level of education of the patients. ... neuropathy, impaired vision, elevated blood lipids and amputation of toes or feet.

  6. Combined life satisfaction of persons with stroke and their caregivers: associations with caregiver burden and the impact of stroke

    Directory of Open Access Journals (Sweden)

    von Koch Lena

    2011-01-01

    Full Text Available Abstract Background Little is known about the life satisfaction of the person with stroke combined with their caregiver, i.e. the dyad, despite the fact that life satisfaction is an important rehabilitation outcome. The aim of this study was to describe the dyads combined life satisfaction and to understand this in relationship to the perceived impact of stroke in everyday life and caregiver burden. Methods In this cross-sectional study, the life satisfaction of persons and their informal caregivers was measured in 81 dyads one year post stroke. Their global life satisfaction, measured with LiSat-11, was combined to a dyad score and the dyads were then categorized as satisfied, dissatisfied or discordant. The groups were compared and analyzed regarding levels of caregiver burden, measured with the Caregiver Burden scale, and the perceived impact of stroke in everyday life, measured with the Stroke Impact Scale (SIS. Results The satisfied dyads comprised 40%, dissatisfied 26% and those that were discordant 34%. The satisfied dyads reported a significantly lower impact of the stroke in everyday life compared with the dyads that were not satisfied. As expected, dyads that were not satisfied reported a significantly greater caregiver burden compared with the satisfied dyads. The discordant group was further broken down into a group of dissatisfied and satisfied caregivers. The caregivers that were not satisfied in the discordant group perceived a significantly greater level of caregiver burden compared with the satisfied group. Even caregivers who were satisfied with life but whose care recipients were not satisfied reported caregiver burden. Conclusions Measuring combined life satisfaction provides a unique focus and appears to be a feasible way of attaining the dyads' perspective. The findings suggest that those dyads with a discordant life satisfaction could be vulnerable because of the caregivers' reported caregiver burden. These findings

  7. Exemplary Care as a Mediator of the Effects of Caregiver Subjective Appraisal and Emotional Outcomes

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    Harris, Grant M.; Durkin, Daniel W.; Allen, Rebecca S.; DeCoster, Jamie; Burgio, Louis D.

    2011-01-01

    Purpose: Exemplary care (EC) is a new construct encompassing care behaviors that warrants further study within stress process models of dementia caregiving. Previous research has examined EC within the context of cognitively intact older adult care recipients (CRs) and their caregivers (CGs). This study sought to expand our knowledge of quality of…

  8. [Quality of life in Latin American immigrant caregivers in Spain].

    Science.gov (United States)

    Bover, Andreu; Taltavull, Joana Maria; Gastaldo, Denise; Luengo, Raquel; Izquierdo, María Dolores; Juando-Prats, Clara; Sáenz de Ormijana, Amaia; Robledo, Juana

    2015-01-01

    To describe perceived quality of life in Latin American caregivers working in Spain and how it varies in relation to certain variables shared by this group. We used the SF-36 to measure perceived quality of life in 517 women residing in five Spanish regions: the Balearic Islands, Catalonia, the Basque Country, the Canary Islands, and Madrid. Several variables related to the socio-demographic profile and migration process were studied using Student's t test, ANOVA and linear regression models. The participants scored very low on the dimensions of physical and emotional roles. The factors associated with lower quality of life scores within the group were working as a live-in caregiver, lack of contract, multitasking, irregular status, and younger age. The vulnerability of these women can be explained by poor working conditions and other factors related to the migratory process. Copyright © 2014 SESPAS. Published by Elsevier Espana. All rights reserved.

  9. Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support.

    Science.gov (United States)

    Ribé, José M; Salamero, Manel; Pérez-Testor, Carles; Mercadal, Josep; Aguilera, Concepción; Cleris, Margarida

    2018-03-01

    Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. There is a significant association between the caregiver's burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.

  10. How Can an Emergency Department Assist Patients and Caregivers at the End of Life?

    Science.gov (United States)

    ... And Caregivers At The End Of Life? How Can An Emergency Department Assist Patients And Caregivers At ... your family. Five ways that the Emergency Department can help 1. Assist in the recognition and understanding ...

  11. Impacts of care-giving and sources of support: a comparison of end-of-life and non-end-of-life caregivers in Canada.

    Science.gov (United States)

    Williams, Allison M; Wang, Li; Kitchen, Peter

    2016-03-01

    This is the second in a series of papers that deal with care-giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long-term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care-giving experience and the caregiver supports received, while also examining the differences in these across EOL and non-EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non-EOL caregivers. The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers. © 2015 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.

  12. Association between Caregiving, Meaning in Life, and Life Satisfaction beyond 50 in an Asian Sample: Age as a Moderator

    Science.gov (United States)

    Ang, Rebecca P.; O, Jiaqing

    2012-01-01

    The association between caregiving, meaning in life, and life satisfaction was examined in sample of 519 older Asian adults beyond 50 years of age. Two hierarchical multiple regression analyses were conducted to examine age as moderator of the associations between caregiving, meaning in life, and life satisfaction. Age moderated the association…

  13. The dynamic interplay between appraisal and core affect in daily life

    Directory of Open Access Journals (Sweden)

    Peter eKuppens

    2012-10-01

    Full Text Available Appraisals and core affect are both considered central to the experience of emotion. In this study we examine the bidirectional relationships between these two components of emotional experience by examining how core affect changes following how people appraise events and how appraisals in turn change following how they feel in daily life. In an experience sampling study, participants recorded their core affect and appraisals of ongoing events; data were analyzed using cross-lagged multilevel modeling. Valence-appraisal relationships were found to be characterized by congruency: The same appraisals that were associated with a change in pleasure-displeasure (motivational congruency, other-agency, coping potential, and future expectancy, changed themselves as a function of pleasure-displeasure. In turn, mainly secondary appraisals of who is responsible and how one is able to cope with events were associated with changes in arousal, which itself is followed by changes in the future appraised relevance of events. These results integrate core affect and appraisal approaches to emotion by demonstrating the dynamic interplay of how appraisals are followed by changes in core affect which in turn change our basis for judging future events.

  14. Quality of Life of Caregivers of Children with Autism in Qatar

    Science.gov (United States)

    Kheir, Nadir; Ghoneim, Ola; Sandridge, Amy L.; Al-Ismail, Muna; Hayder, Sara; Al-Rawi, Fadhila

    2012-01-01

    Introduction: Caring for a child diagnosed with autism could affect the quality of life of the caregiver in various different ways. No previous research has assessed the quality of lives of caregivers of children with autism in Qatar. Methods: Caregivers of a child with autism between 3 and 17 years old were recruited from child rehabilitation…

  15. Health-Related Quality of Life in the Family Caregivers of Stroke Survivors

    Science.gov (United States)

    Chen, Yangkun

    2010-01-01

    The objective of this cross-sectional study was to identify the factors associated with health-related quality of life (HRQOL) of family caregivers of Chinese stroke patients. One hundred and twenty-three stroke patients consecutively admitted to a stroke clinic and their 123 family caregivers were recruited. The caregivers' HRQOLs were assessed…

  16. Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study

    OpenAIRE

    Zegwaard, Marian I; Aartsen, Marja J; Grypdonck, Mieke HF; Cuijpers, Pim

    2013-01-01

    Background: Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently kno...

  17. Juggling work and elder caregiving: work-life balance for aging American workers.

    Science.gov (United States)

    Pitsenberger, D Jeanne

    2006-04-01

    As the American work force ages, the demands of caring for aging relatives increase. Family caregiving often interferes with workplace responsibilities, creating physical, emotional, and financial stress for caregivers. Employers must address the productivity losses created by absenteeism of workers who struggle with work-life issues created by caregiving roles. Occupational health nurses must understand the factors that affect workers in their caregiving roles and make appropriate nursing interventions. They are in key positions to help aging employees and their employers face the increased demands on work-life balance created by elder caregiving.

  18. Gender Differences in Caregiving at End of Life: Implications for Hospice Teams.

    Science.gov (United States)

    Washington, Karla T; Pike, Kenneth C; Demiris, George; Parker Oliver, Debra; Albright, David L; Lewis, Alexandria M

    2015-12-01

    Researchers have identified important gender differences in the experience of caring for a family member or friend living with advanced disease; however, trends suggest that these differences may be diminishing over time in response to changing gender roles. In addition, while many studies have found caregiving experiences and outcomes to be poorer among female caregivers, noteworthy exceptions exist. The primary aim of this exploratory study was to determine how, if at all, current day caregiving at end of life varies by gender. We conducted a secondary analysis of data from a multisite randomized controlled trial of a family caregiving intervention performed between 2010 and 2014. We compared female and male hospice family caregivers on baseline variables using χ(2) tests for association of categorical variables and t-tests for continuous variables. Our sample included 289 family caregivers of individuals receiving services from one of two hospice agencies located in the northwestern United States. Demographic data and other categorical variables of interest were provided via caregiver self-report using an instrument created specifically for this study. Reaction to caregiving and caregiving burden were measured using the Caregiver Reaction Assessment (CRA). As it related to caregiving, females had significantly lower self-esteem and more negative impact on their schedule, health, and family support than males. No gender differences were detected with regard to the impact of caregiving on individuals' finances. Despite changing social expectations, pronounced gender differences persist in caregiving at the end of life.

  19. Correlates of quality of life for individuals with dementia living at home: the role of home environment, caregiver, and patient-related characteristics.

    Science.gov (United States)

    Gitlin, Laura N; Hodgson, Nancy; Piersol, Catherine Verrier; Hess, Edward; Hauck, Walter W

    2014-06-01

    To examine prevalence of modifiable risk factors and their contribution to patient quality of life (QoL) as rated by dementia patients and family caregivers. Cross-sectional. Home environment. 88 patients and their caregivers. Modifiable characteristics of home environments, patients, and caregivers were observed or obtained through interview. Demographics and ratings of patients' QoL were obtained from patients and caregivers. Patients had mean Mini-mental Status Examination (MMSE) score = 17.7 ± 4.6, (range: 10-28) on an average 7.7 ± 2.4 neuropsychiatric behaviors, 6.0 ± 3.1 health conditions and moderate functional challenges; 70.7% (N = 58) had fall risk; 60.5% (N = 52) had sleep problems at least once weekly; and 42.5% (N = 37) had pain. An average of 8.1 ± 5.2 home hazards and 5.4 ± 4.1 adaptations were observed; 51.7% had unmet device/navigation needs. Patients' and caregivers' QoL ratings were unrelated to MMSE; and patients' self-rated QoL was higher than rated by caregivers. Number of health conditions and unmet device/navigation needs were inversely associated with patient self-rated QoL, and number of health conditions, frequency of behaviors, and level of negative communications were inversely associated with caregiver's assessment of patient QoL. Positive endorsement of caregiving was positively associated with caregiver's appraisal of patient QoL. Other factors were unrelated. Most patients lived at home with high fall risk, unmanaged behavioral symptoms, pain, sleep disturbances, environmental challenges, and multiple hazards. Except for health, factors associated with lower QoL differed for patients and caregivers. Results suggest need to improve QoL by addressing modifiable risk factors and tailoring interventions to patient and caregiver perspectives. Copyright © 2014 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

  20. Caregivers of older persons with multiple sclerosis: determinants of health-related quality of life.

    Science.gov (United States)

    Buhse, Marijean; Della Ratta, Carol; Galiczewski, Janet; Eckardt, Patricia

    2015-04-01

    This study was conducted to determine which factors (clinical and demographic) are associated with mental and physical health-related quality of life (HRQOL) for caregivers of older persons with multiple sclerosis (MS). The Andersen's Healthcare Utilization Model guided this study. Knowledge of identified predictors of HRQOL may prompt nurses who care for persons with MS to address these issues and provide supportive care. A cross-sectional descriptive design was used to examine the relationship between patient with MS and caregiver clinical and demographic factors with caregiver physical and mental HRQOL. Patients with MS aged 60 years or older and their caregivers from four MS centers on Long Island, New York, self-selected into this study (n = 102). A caregiver survey was administered that collected demographic information and included validated questionnaires measuring HRQOL, caregiver burden, and caregiver perception of risk for neuropsychological impairment of patients with MS. Patient surveys collected demographic information and validated questionnaires measuring cognition, depression, and disability. Multivariate linear regression was used to examine patient and caregiver variables to explain caregiver physical and mental HRQOL. The caregivers in this study were older (mean age = 61 years) with existing comorbidities. We found that caregiver mental HRQOL was negatively associated with patient depression and, surprisingly, positively associated with caregiver burden and caregiver comorbidity of heart disease. Caregiver physical HRQOL was negatively associated with caregiver comorbidities of arthritis and diabetes and lower household income. The challenges older caregivers face when caring for older persons with MS have been shown to affect their mental and physical QOL. Nurses who care for older patients with MS will increasingly rely on older caregivers to provide patient-centered interventions. This descriptive study, based on the Anderson theoretical

  1. Death Anxiety and Quality of Life in Iranian Caregivers of Patients With Cancer.

    Science.gov (United States)

    Soleimani, Mohammad Ali; Lehto, Rebecca H; Negarandeh, Reza; Bahrami, Nasim; Chan, Yiong Huak

    Concerns about death may alienate and negatively impact communication among family members of patients with life-threatening illness. Little is known about the relationship of death anxiety to quality of life in cancer family caregivers. The aim of this study was to examine relationships between sociodemographic and patient-related factors, social support, and religiosity with death anxiety and quality of life in Iranian cancer family caregivers. Three hundred thirty family caregivers from an urban regional cancer institute in Iran participated in a descriptive-correlational study that incorporated sociodemographic surveys and validated death anxiety (Templer Scale) and Quality of life (Family Version) instruments. Caregivers reported moderate levels of death anxiety and decrements in QOL. Quality of life was inversely associated with death anxiety (r = -0.30, P quality of life. Death anxiety is associated with lowered quality of life in Iranian family caregivers. Multiple factors may impact death anxiety and quality of life relevant to the socioreligious milieu. Addressing concerns that increase death anxiety may improve quality of life and lower stress associated with adapting to the family caregiver role. Caregiving responsibilities, added to challenges associated with personal, family, and professional life, impact multiple aspects of QOL. As nurses increasingly care for patients from diverse backgrounds, it becomes more imperative that support for family caregivers that promotes psychological adaptation and quality of life is needed.

  2. A metasynthesis study of family caregivers' transition experiences caring for community-dwelling persons with advanced cancer at the end of life.

    Science.gov (United States)

    Duggleby, Wendy; Tycholiz, Jamie; Holtslander, Lorraine; Hudson, Peter; Nekolaichuk, Cheryl; Mirhosseini, Mehrnoush; Parmar, Jasneet; Chambers, Thane; Alook, Angele; Swindle, Jennifer

    2017-07-01

    Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. Sandelowski and Barroso's methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. A total of 72 studies were included in the metasynthesis. Family caregivers experience a "life transition" whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. The findings provide a framework to guide the development of supportive programs and future research.

  3. Religiousness is positively associated with quality of life of ALS caregivers.

    Science.gov (United States)

    Calvo, Andrea; Moglia, Cristina; Ilardi, Antonio; Cammarosano, Stefania; Gallo, Sara; Canosa, Antonio; Mastro, Enza; Montuschi, Anna; Chiò, Adriano

    2011-05-01

    It has been repeatedly shown that religiousness and spirituality have positive effects on quality of life (QoL) and outcome in ALS patients. here are, however, very few data on the impact of religiousness/spirituality on ALS caregivers. We determined the impact of religiousness on caregivers and its correlation with quality of life, depression and anxiety. A total of 75 consecutive ALS patients and their informal caregivers were interviewed using tests evaluating religiousness, depression, anxiety, quality of life and satisfaction with life. Results showed that there was a significant correlation between patients and caregivers' public and total religiousness. Caregivers' private religiousness was related to their age and education level, while their public religiousness was related only to their education level. Caregivers' quality of life was related to their private religiousness and satisfaction with life with their total religiousness. We conclude that religiousness is positively associated with ALS caregivers' quality of life and satisfaction with life, in a measure similar to that observed in ALS patients. Health care professionals caring for ALS patients should consider that the needs of the caregivers include religious/spiritual concerns.

  4. Caregiver Quality of Life and Daily Functioning in Relation to Ventilating Tube Treatment

    DEFF Research Database (Denmark)

    Heidemann, Christian Hamilton; Lauridsen, Henrik Hein; Kjeldsen, Anette Drøhse

    2014-01-01

    and to investigate possible predictors for clinical success. STUDY DESIGN: Longitudinal observational study. SETTING: Secondary care units. METHODS: Four hundred ninety-one families were enrolled in the study. The Caregiver Impact Questionnaire was applied in the assessment of caregiver quality of life. Caregivers......OBJECTIVE: Caregiver quality of life and daily functioning may improve after ventilating tube treatment in children with otitis media. The aims of this study are to assess possible changes in caregiver quality of life and daily functioning in relation to ventilating tube treatment...... completed questionnaires at baseline and at 1, 3, 6, 12, and 18 months' follow-up. Variables on caregiver daily functioning comprised 4 weeks' history of number of interrupted nights, absenteeism, cancelled social activities, and doctor visits as a result of otitis media in the child. RESULTS: Response...

  5. Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study

    NARCIS (Netherlands)

    Zegwaard, M.I.; Aartsen, M.J.; Grypdonck, M.H.F.; Cuijpers, P.

    2013-01-01

    Background: Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds

  6. Caregivers' quality of life and quality of services for children with cancer: a review from iran.

    Science.gov (United States)

    Sajjadi, Homeira; Vameghi, Meroe; Ghazinour, Mehdi; Khodaeiardekani, Mohammadreza

    2013-03-04

    Caregivers of cancer patients are exposed to different types of psychosocial stress which influence their quality of life. The purposes of this study were to assess quality of life in caregivers of children with cancer and to investigate the relationship between the caregivers' quality of life and quality of services in the social work section. 125 caregivers were recruited. Quality of life was measured by the Iranian version of the WHOQOL-BREF questionnaire and data concerning service quality were obtained from the Iranian version of the SERVQUAL questionnaire. Scores in physical health, psychological status and environmental conditions for caregivers of children with cancer were significantly lower than the general population. There was a negative correlation between the tangible domain of SERVQUAL and the psychological status and environmental conditions of quality of life. The tangible dimension was the only aspect of service quality to predict caregivers' quality of life regarding psychological status and environmental conditions. Caregivers of children with a disease are care consumers and, like all consumers, they expect good service. Delivering high quality services consistently is difficult but profitable for a service organization. In other words, trying to deliver more appropriate services than patients expect to receive from their social work care is one of the most reliable ways to promote caregivers' satisfaction and quality of life.

  7. Sources of Life Strengths Appraisal Scale: A Multidimensional Approach to Assessing Older Adults’ Perceived Sources of Life Strengths

    Directory of Open Access Journals (Sweden)

    Prem S. Fry

    2014-01-01

    Full Text Available Both cognitive and psychosocial theories of adult development stress the fundamental role of older adults’ appraisals of the diverse sources of cognitive and social-emotional strengths. This study reports the development of a new self-appraisal measure that incorporates key theoretical dimensions of internal and external sources of life strengths, as identified in the gerontological literature. Using a pilot study sample and three other independent samples to examine older adults’ appraisals of their sources of life strengths which helped them in their daily functioning and to combat life challenges, adversity, and losses, a psychometric instrument having appropriate reliability and validity properties was developed. A 24-month followup of a randomly selected sample confirmed that the nine-scale appraisal measure (SLSAS is a promising instrument for appraising older adults’ sources of life strengths in dealing with stresses of daily life’s functioning and also a robust measure for predicting outcomes of resilience, autonomy, and well-being for this age group. A unique strength of the appraisal instrument is its critically relevant features of brevity, simplicity of language, and ease of administration to frail older adults.

  8. Positive caregiving experiences are associated with life satisfaction in spouses of stroke survivors.

    Science.gov (United States)

    Kruithof, Willeke J; Visser-Meily, Johanna M A; Post, Marcel W M

    2012-11-01

    Studies into caregivers usually have been focused on negative caregiving experiences. This study is based on the hypotheses that positive caregiving experiences (i.e., self-esteem derived from caregiving) of spouses of stroke patients also need to be taken into account, and that these are related to life satisfaction in 2 ways: first, by a direct association with life satisfaction, and second, indirectly by way of a buffer effect (i.e., by compensating for the impact of negative caregiving experiences on life satisfaction). In this cross-sectional study (n = 121) 3 years poststroke, the Caregiver Reaction Assessment was used to assess caregiver burden (Burden) and self-esteem derived from caregiving (Self-esteem scale). Life satisfaction was measured with the Life Satisfaction Questionnaire (LiSat-9). Spearman correlations and regression analyses were performed. Both Self-esteem and Burden scores were associated with life satisfaction (correlation coefficients 0.35 and -0.74, respectively). An interaction effect was also found (P = .006); spouses who perceived both high Burden and high Self-esteem reported significantly higher life satisfaction scores (mean 4.2, standard deviation [SD] 0.5) than spouses who perceived high Burden but low Self-esteem (mean 3.6, SD 0.7). Positive caregiving experiences are related to spouses' life satisfaction 3 years poststroke and mediate the impact of burden on life satisfaction. Positive caregiving experiences should get more attention in rehabilitation research and practice. Copyright © 2012 National Stroke Association. Published by Elsevier Inc. All rights reserved.

  9. Participation in everyday life and life satisfaction in persons with stroke and their caregivers 3-6 months after onset.

    Science.gov (United States)

    Bergström, Aileen L; von Koch, Lena; Andersson, Magnus; Tham, Kerstin; Eriksson, Gunilla

    2015-06-01

    To explore and describe persons with stroke and their caregivers' restrictions in participation in everyday occupations, i.e. occupational gaps, 3-6 months post-stroke, in relation to life satisfaction, combined life satisfaction, care-giver burden, perceived impact of stroke, and activities of daily living. Cross-sectional study. Persons with stroke and their caregivers (105 dyads). The Occupational Gaps Questionnaire, Life Satisfaction Checklist, Caregiver Burden Scale, Stroke Impact Scale and Barthel Index were used. Correlations were analysed with Spearman's rank, and regression analyses used life satisfaction as the dependent variable. At least one person in 86% of the dyads perceived restrictions in participation, with the most common gap in travelling for pleasure. Correlations were low between the numbers of occupational gaps and life satisfaction (R = -0.33, R = -0.31); however, life satisfaction accounted for occupational gaps both for persons with stroke and for caregivers. A greater number of occupational gaps were perceived in the dyads with combined low levels of life satisfaction compared with those with combined high levels of life satisfaction. Participation in everyday occupations is related to life satisfaction even for caregivers of persons with stroke. The results of this study add to our knowledge about the stroke-caregiver dyad and will help to inform family-centred approaches within stroke rehabilitation.

  10. Quality of life of family caregivers of cancer patients in Singapore and globally.

    Science.gov (United States)

    Lim, Haikel A; Tan, Joyce Ys; Chua, Joanne; Yoong, Russell Kl; Lim, Siew Eng; Kua, Ee Heok; Mahendran, Rathi

    2017-05-01

    Family caregivers of cancer patients often suffer from impaired quality of life (QOL) due to stress arising from the responsibility of caregiving. Most research on such QOL impairments was conducted in Western populations. Thus, this exploratory study sought to (a) examine the QOL levels of family caregivers of cancer patients in an Asian population in Singapore, in relation to caregivers from other countries within and outside of Asia; and (b) investigate the association between sociodemographic factors and QOL impairments in family caregivers in Singapore. A total of 258 family caregivers of cancer patients who were receiving outpatient treatment completed the Caregiver Quality of Life Index-Cancer (CQOLC) and a sociodemographic survey. We compared the published CQOLC total scores from Turkey, Iran, Taiwan, South Korea, the United Kingdom, the United States and Canada with the Singapore dataset and examined the demographic relationships. Caregivers in Singapore and Asia had lower CQOLC total scores than their Western counterparts. Caregivers who were male, of Chinese ethnicity, had parental relationships with their care recipient, or cared for advanced-stage cancer patients were found to have impaired QOL. The findings of this study highlight possible areas in which support can be provided for family caregivers of cancer patients, and underscore the need to reconcile cultural diversity, values, societal expectations and demographic characteristics in Singapore. Copyright: © Singapore Medical Association

  11. Appraisals, perceived dyadic communication, and quality of life over time among couples coping with prostate cancer.

    Science.gov (United States)

    Song, Lixin; Rini, Christine; Ellis, Katrina R; Northouse, Laurel L

    2016-09-01

    Little research has examined how prostate cancer patients' and their spouses' appraisals of illness and quality of life (QOL) interact with one another. This study examined the interdependent relationships between their appraisals of illness and QOL and if their perceived dyadic communication mediated these relationships. We used the Actor-Partner Interdependence Mediation Model (APIMeM) approach to conduct a secondary analysis of longitudinal data from 124 prostate cancer patient-spouse dyads. We examined actor effects (each person's influence on his/her own outcomes) and partner effects (each person's influence on his/her partner's outcomes). Appraisals of illness, perceived dyadic communication, and QOL were measured using Appraisal of Illness Scale, Lewis Mutuality and Interpersonal Sensitivity Scale, and Functional Assessment of Chronic Illness Therapy General Scale, respectively. Analyses controlled for effects of prostate cancer symptoms and demographic factors. Among actor effects, spouses with more negative appraisals at baseline perceived worse dyadic communication 4 months later (p dyadic communication at 4 months had better QOL at 8 months (p dyadic communication at 4 months and better spouse QOL at 8 months of follow-up (p = .05). No mediation effects were found. Patients' and spouses' appraisals of the illness and their dyadic communication were associated with their long-term QOL. Interventions that reduce negative appraisals of illness and promote dyadic communication may improve QOL for both patients with prostate cancer and their spouses.

  12. Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study.

    Science.gov (United States)

    Zegwaard, Marian I; Aartsen, Marja J; Grypdonck, Mieke Hf; Cuijpers, Pim

    2013-03-27

    Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver's life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness. A qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews. We identified an underlying psychological factor "perceived freedom of choice" which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver. The concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers' life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically

  13. [Correlation between quality of life and morbidity of the caregivers of elderly stroke patients].

    Science.gov (United States)

    Santos, Nilce Maria de Freitas; Tavares, Darlene Mara Dos Santos

    2012-08-01

    The objective of this study was to describe the sociodemographic characteristics and the quality of life of the caregivers of elderly individuals with a stroke history, and correlate morbidity with the caregivers' quality of life scores. This is a cross-sectional household survey that interviewed the caregivers of elderly individuals using the following tools: a semi-structured instrument; the World Health Organization Quality of life-BREF; and the Brazilian Multidimensional Functional Assessment Questionnaire. Descriptive analysis and Pearson's correlation (psalary (34.8%). The highest quality of life score was in the social relations domain (67.57) and the lowest was in the environmental domain (54.82). The highest number of caregiver morbidities correlated with the lowest scores in all quality of life domains.

  14. The daily life of informal caregivers of patients undergoing chemotherapy

    Directory of Open Access Journals (Sweden)

    Mariana Ortelani de Toledo

    2013-04-01

    Full Text Available This paper aims to discuss the daily life of Informal Caregivers (ICG of cancer patients assisted in an outpatient chemotherapy unit of a university hospital in Campinas, São Paulo state. This study is part of a broader investigation. It was approved by a Research Ethics Committee under protocol n. 0288/10, and all ethical principles were adopted in accordance with the recommendations of Resolution 196/96. It is a descriptive, quantitative and qualitative study with literature and field research. Semi-structured interviews were conducted with 14 ICGs for data collection. The data were analyzed based on the goals of the study and the theory and practice pertaining to the Theory of Social Representation. The results showed that (92.8% of the ICGs are female (57.1%, married, between 41 and 60 years old (78.5%, living in the same household of the sickened family members at the following degrees of relatedness: (35.7% mother-daughter, followed by (21.4% husband-wife. In the Informal Caregivers’ perception, their role interfered with their daily activities, bringing restrictions to leisure activities, self-care and work. The study expanded the understanding of the impacts that the function of caring brings to their everyday activities, helping to foster discussions about the need to implement actions and interventions of occupational therapy strategies that facilitate the daily lives of ICGs.

  15. Quality of Life among Primary Caregivers of Women with Breast Cancer: A Review

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    Jawad Ghaleb Obaidi

    2013-04-01

    Full Text Available Background: Cancer diagnosis has a significant impact not only on women, but also on their Primary caregivers. Understanding the effects of a breast cancer diagnosis on physical and mental health outcomes in caregivers is important because these variables are key components of quality of life. Quality of life is a multi-dimensionalconstruct measuring overall enjoyment of life. This study intends to describe the impact of caring for women with breast cancer on the quality of life among their primary caregivers.Method: We conducted a comprehensive search in PubMed, MEDLINE andCINAHL. In addition, we used the web search engine “Google” for abstracts from 2007 to 2012. A total of eight studies were reviewed that met the following inclusion criteria: adult women with breast cancer, research conducted in English. Studies ranged from 2007-2011. The total sample size in the eight studies on adult caregivers totaled 789 participants. The average age of participants in all of the studies was 49.55 years.There were seven studies that had a quantitative focus,which mainly used a questionnaire and survey to estimate quality of life among primary caregivers. The qualitative approach included in-depth interviews and a focus group.Results: Accumulating evidence has supported the concept that cancer affects not only the patients but also their primary caregiver's quality of life.They face multiple challenges in caring for women with breast cancer, including physical, emotional, social, and financial stress that affects the caregiver's quality of life.Conclusion: Breast cancer diagnosis not only affects the patient's quality of life, but in parallel, also affects the quality of life of the primary caregiver. Thus more focus should be placed on providing moral and social support, and educational resources to improve the level of the caretaker's quality of life.

  16. Caregiver's Burden and Quality of Life: Caring for Physical and Mental Illness

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    Salvatore Settineri

    2014-01-01

    Full Text Available Several studies have been focused on the quality of life of caregivers caring for patients with exclusively physical or mental diseases, but little is known about the differences related to the burden experienced. This study had as its subject the burden of caregivers and their quality of life involved in helping patients with diseases (1 physical, (2 mental and (3 both pathological conditions. We interviewed 294 caregivers of outpatients undergoing physiotherapic, psychiatric and neuroriabilitative treatment. The evaluation was carried out with three instruments: an informative questionnaire, the Caregiver Burden Inventory (CBI and the Quality of Life Index (QoL -I. Results show that both the burden and the quality of life are significantly worse for caregivers who care for patients with both physical and mental diseases. Caregivers most disadvantaged are those who indicate as a reason of care the sense of duty rather than the affection. Finally, the sons and daughters, differently from the parents, showed a greater burden of required time and a lower quality of life. The investigation of the motivational aspects of the caregivers and the increased knowledge of the differences between the emotional experience of parents and children can contribute to the definition of more specific psycho-educational interventions and support.

  17. Quality of life and burden in caregivers of patients with epilepsy.

    Science.gov (United States)

    Westphal-Guitti, Ana Carolina; Alonso, Neide Barreira; Migliorini, Rosa Cristina Vaz Pedroso; da Silva, Tatiana Indelicato; Azevedo, Auro Mauro; Caboclo, Luís Otávio Sales Ferreira; Sakamoto, Américo Ceiki; Yacubian, Elza Márcia Targas

    2007-12-01

    The purpose of this study was to compare quality of life and burden in 100 caregivers of adolescent and adult patients with epilepsy that started in adolescence. We invited caregivers of 50 patients with temporal lobe epilepsy (TLE) related to mesial temporal sclerosis and caregivers of 50 patients with juvenile myoclonic epilepsy (JME) to participate. After the caregivers answered a sociodemographic questionnaire, they answered the Brazilian version of the Burden Interview (BI) Scale and we assessed their quality of life using the 36-Item Short-Form Health Survey (SF-36). The mean ages of patients were 25.4 and 36.4 years and epilepsy duration was 14 and 25.6 years in the JME and TLE groups, respectively. We found a mild to moderate burden on caregivers in both groups, with a BI average score of 25.5 for JME and 30.7 for TLE. Caregivers in the JME group had lower scores in all domains of the SF-36 and reported higher burden. Low scores were also seen in three domains for the TLE group. These results suggest that caregivers of patients with both epileptic syndromes experience interference in their lives. When we compared the two groups, we found no difference between caregiver data on SF-36 and BI. Quality of life was significantly compromised in caregivers of patients with JME and TLE, and the two groups were burdened to a similar degree (mild to moderate). Nurses can carry out psychoeducative programs with the objective of diagnosing the impact of epilepsy in the family, decreasing burden, and improving quality of life for caregivers.

  18. Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden

    Science.gov (United States)

    Jacobs, Daniel I.; Kumthekar, Priya; Stell, Becky V.; Grimm, Sean A.; Rademaker, Alfred W.; Rice, Laurie; Chandler, James P.; Muro, Kenji; Marymont, MaryAnne; Helenowski, Irene B.; Wagner, Lynne I.; Raizer, Jeffrey J.

    2014-01-01

    Background Given the neurocognitive impairment experienced by many patients with malignant gliomas, caregiver reports can be critical in assessing the quality of life (QOL) of these patients. In this study, we explored whether assessment of patient QOL by the primary caregiver shows concordance with the patient's self-reported QOL, and we quantified the burden faced by caregivers. Methods QOL of 45 patients was evaluated by both the patient and primary caregiver on 3 or more separate occasions using the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument, and concordance between the 2 reports was evaluated. Caregiver burden was measured using the Caregiver Quality of Life Index-Cancer (CQOL-C) instrument. Results Overall, good concordance was observed between the patient and caregiver FACT-Br reports (intraclass correlation coefficient = 0.74). Patient-reported FACT-Br scores were 4.75 (95% CI, 1.44–8.05) points higher than paired caregiver reports on the 200-point scale (P = .008); however, this difference did not achieve clinical significance. Caregiver burden, as measured by the CQOL-C, was significantly greater among caregivers in this study than those previously reported for caregivers of patients with lung, breast, or prostate cancer (P < .001). Conclusions Despite minor discrepancies in caregiver assessments of patient QOL relative to patient self-reports, our results suggest that the caregiver assessments can serve as adequate proxies for patient reports. Our results also illustrate the particularly heavy burden faced by caregivers of patients with malignant glioma. Further research into both of these areas is warranted. PMID:26034616

  19. Living with schizophrenia: Health-related quality of life among primary family caregivers.

    Science.gov (United States)

    Hsiao, Chiu-Yueh; Lee, Chun-Te; Lu, Huei-Lan; Tsai, Yun-Fang

    2017-12-01

    To examine influencing factors of health-related quality of life in primary family caregivers of people with schizophrenia receiving inpatient psychiatric rehabilitation services. Families, particularly primary family caregivers, have become more important than ever in mental health care. Yet, research on health-related quality of life among primarily family caregivers is limited. A correlational study design was used. A convenience sample of 122 primary family caregivers participated in the study. Data were analysed with descriptive statistics, Pearson's product-moment correlation, t test, one-way analysis of variance and a hierarchical multiple regression analysis. Primary family caregivers who were parents, older, less educated, and had a lower monthly household income, increased affiliate stigma and decreased quality of family-centred care experienced poor health-related quality of life. Particularly, monthly household income, affiliate stigma and quality of family-centred care appeared to be the most critical determinants of health-related quality of life. Efforts to enhance satisfaction of life should focus on reducing affiliate stigma as well as increasing monthly household income and strengthening the quality of family-centred care. Findings may assist in the development of culturally integrated rehabilitation programmes to decrease affiliate stigma and increase family engagement as a means of promoting quality of life for primary family caregivers living with people who have schizophrenia. © 2017 John Wiley & Sons Ltd.

  20. [The life as a caregiver of a person affected by Chorea Huntington: multiple case study].

    Science.gov (United States)

    Winkler, Evi; Ausserhofer, Dietmar; Mantovan, Franco

    2012-10-01

    Chorea Huntington is an autosomal dominantly inherited, neurodegenerative brain disorder that leads to involuntary hyperkinesia, psychotic symptoms and dementia. The illness not only changes the life of the person itself but also the world of the caregivers. The challenges in the care of a person which is affected by Chorea Huntington have an effect on the daily living as an assemblage of natural and social conditions. a multiple case study was conducted. It included semi-structured interviews with three caregivers of people with Chorea Huntington in South Tyrol. The qualitative data was analyzed using the qualitative structured analysis of Mayring (2007). The objective of this study was to describe the phenomenon of change of life from family members that care people affected by Chorea Huntington in a specific cultural setting (South Tyrol, Italy). The caregivers reported that the diagnosis of Chorea Huntington leads to negative changes in "relationship and family". Particularly, frustration, aggression, impatience and apathy were perceived as stressful. At the same time they highlight the positive changes through home care. They report that the relationship became more intimate and integral and it was characterized by more cohesion. Family caregivers get valuable support from the home care service, however, they complain that there is no facility in South Tyrol, which is specialized to care people with Chorea Huntington. Therefore, the caregivers have to "give up a lot" and don't have any personal desires, dreams and expectations for the future. The caregivers have learned independently to deal with their changed life step by step, and to see also the positive effects of the caring role. The life of family caregivers of a person which is affected by Chorea Huntington is characterized by abandonment. A continuous and professional care would be important for the affected and his caregiver. A continuous and professional care is important for both, addressing the

  1. Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal

    Directory of Open Access Journals (Sweden)

    Schwartz Carolyn E

    2004-03-01

    Full Text Available Abstract The increasing evidence for response shift phenomena in quality of life (QOL assessment points to the necessity to reconsider both the measurement model and the application of psychometric analyses. The proposed psychometric model posits that the QOL true score is always contingent upon parameters of the appraisal process. This new model calls into question existing methods for establishing the reliability and validity of QOL assessment tools and suggests several new approaches for describing the psychometric properties of these scales. Recommendations for integrating the assessment of appraisal into QOL research and clinical practice are discussed.

  2. Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal

    Science.gov (United States)

    Schwartz, Carolyn E; Rapkin, Bruce D

    2004-01-01

    The increasing evidence for response shift phenomena in quality of life (QOL) assessment points to the necessity to reconsider both the measurement model and the application of psychometric analyses. The proposed psychometric model posits that the QOL true score is always contingent upon parameters of the appraisal process. This new model calls into question existing methods for establishing the reliability and validity of QOL assessment tools and suggests several new approaches for describing the psychometric properties of these scales. Recommendations for integrating the assessment of appraisal into QOL research and clinical practice are discussed. PMID:15038830

  3. Health and quality of life among the caregivers of children with disabilities: A review of literature.

    Science.gov (United States)

    Isa, Siti Nor Ismalina; Ishak, Ismarulyusda; Ab Rahman, Azriani; Mohd Saat, Nur Zakiah; Che Din, Normah; Lubis, Syarif Husin; Mohd Ismail, Muhammad Faiz

    2016-10-01

    Families caring for children with disabilities face particular challenges and demands compared to those caring for children without disabilities. Evidence suggests that there is considerable variation in how caregivers of children with disabilities adapt to their caregiving demands and stressors. The different adaptations to the children with disabilities may cause different impacts on the health and well-being of caregivers. This paper provides a brief overview of the literature on the impact of caring for children with disabilities on the health and quality of life of caregivers and the factors related to the health outcomes and quality of life. A literature search was conducted by using various electronic databases, including PsychINFO, ScienceDirect, ProQuest, and MEDLINE using specific key terms. Thirty-one articles published in peer-review journals from the last six years (2009-2014) were reviewed. Most of the studies were quantitative studies. Factors discussed that impact on caregivers' health and quality of life include the caregivers' sociodemographic background and child's disability-related factors. Several mediators and moderators including coping strategies, social support, parental stress, self-esteem and self-efficacy are described in this paper. This review highlighted the importance of these factors to better understand the complex nature of stress processes and the caregivers' adaptations to their children's disabilities. Copyright © 2016 Elsevier B.V. All rights reserved.

  4. Social support mediates the association between benefit finding and quality of life in caregivers.

    Science.gov (United States)

    Brand, Charles; Barry, Lorna; Gallagher, Stephen

    2016-06-01

    The psychosocial pathways underlying associations between benefit finding and quality of life are poorly understood. Here, we examined associations between benefit finding, social support, optimism and quality of life in a sample of 84 caregivers. Results revealed that quality of life was predicted by benefit finding, optimism and social support. Moreover, the association between benefit finding and quality of life was explained by social support, but not optimism; caregivers who reported greater benefit finding perceived their social support be higher and this, in turn, had a positive effect on their overall quality of life. These results underscore the importance of harnessing benefit finding to enhance caregiver quality of life. © The Author(s) 2014.

  5. Comparison of quality of life of Turkish cancer patients and their family caregivers.

    Science.gov (United States)

    Yesilbalkan, Oznur Usta; Ozkutuk, Nilay; Ardahan, Melek

    2010-01-01

    The purpose of this study was to compare the quality of life (QoL) of cancer patients and their family caregivers and determine associations. A total of 93 paired patients and caregivers from an outpatient chemotherapy unit of the oncology units were recruited at a large university hospital in İzmir, all completing the Quality of Life Scale (QoLS). The mean age of patients was 45.2 years, and of their family caregivers was 40.5. The results indicated that the patients perceived a poorer quality of life than their family caregivers. There was a middle and positive correlation between the social participation and work performance dimensions of patients' QoL and social participation and work performance dimension of family caregivers' QoL (r =0.273, p 0.05). Caregivers' employment status was found to have an affect on their quality of life (p ommunication skills, financial planning and distress management skills and be given spiritual support to decrease effects of cancer on their quality of life.

  6. Video Game Addiction and Life Style Changes: Implications for Caregivers Burden.

    Science.gov (United States)

    Sharma, Manoj Kumar

    2016-01-01

    Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents' distress and enabling them to handle the dysfunction in users.

  7. Personal Strengths and Health Related Quality of Life in Dementia Caregivers from Latin America

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    Stephen K. Trapp

    2015-01-01

    Full Text Available The research literature has begun to demonstrate associations between personal strengths and enhanced psychosocial functioning of dementia caregivers, but these relationships have not been examined in the context of dementia caregivers in Latin America. The present study examined whether personal strengths, including resilience, optimism, and sense of coherence, were associated with mental and physical health related quality of life (HRQOL in 130 dementia caregivers in Mexico and Argentina. Structural equation modeling found that the personal strengths collectively accounted for 58.4% of the variance in caregiver mental HRQOL, and resilience, sense of coherence, and optimism each had unique effects. In comparison, the personal strengths together accounted for 8.9% of the variance in caregiver physical HRQOL, and only sense of coherence yielded a unique effect. These results underscore the need to construct and disseminate empirically supported interventions based in part on important personal strengths, particularly sense of coherence, for this underrepresented group.

  8. Personal Strengths and Health Related Quality of Life in Dementia Caregivers from Latin America

    Science.gov (United States)

    Trapp, Stephen K.; Perrin, Paul B.; Aggarwal, Richa; Peralta, Silvina Victoria; Stolfi, Miriam E.; Morelli, Eliana; Peña Obeso, Leticia Aracely; Arango-Lasprilla, Juan Carlos

    2015-01-01

    The research literature has begun to demonstrate associations between personal strengths and enhanced psychosocial functioning of dementia caregivers, but these relationships have not been examined in the context of dementia caregivers in Latin America. The present study examined whether personal strengths, including resilience, optimism, and sense of coherence, were associated with mental and physical health related quality of life (HRQOL) in 130 dementia caregivers in Mexico and Argentina. Structural equation modeling found that the personal strengths collectively accounted for 58.4% of the variance in caregiver mental HRQOL, and resilience, sense of coherence, and optimism each had unique effects. In comparison, the personal strengths together accounted for 8.9% of the variance in caregiver physical HRQOL, and only sense of coherence yielded a unique effect. These results underscore the need to construct and disseminate empirically supported interventions based in part on important personal strengths, particularly sense of coherence, for this underrepresented group. PMID:26160998

  9. The caregiving relationship and quality of life among partners of stroke survivors: A cross-sectional study

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    Wilson Keith G

    2011-05-01

    Full Text Available Abstract Background Since the majority of stroke survivors return home following their stroke, families play a pivotal role in their care. Few studies have addressed both positive and negative aspects of this role or the broader construct of health-related quality of life (HRQL. Furthermore, little consideration has been given to the context of care in terms of relationship quality, and reciprocity. The present study examined the relationships between caregiver quality of life (HRQL, caregiver role, relationship satisfaction, balance and reciprocity in caregivers of partners who had experienced a stroke. Specific hypotheses were made based on equity theory in social relations. Methods Fifty-six partner caregivers completed a postal survey that included measures of HRQL (SF-36, caregiver role (negative and positive aspects, relationship satisfaction, reciprocity and balance. Data were also collected on the care recipients' quality of life (Stroke Specific Quality of Life scale. Results Compared to a normative sample, caregivers' HRQL was lower for all SF-36 domains. Care recipient and caregiver age, care recipient quality of life and caregiver role (negative significantly predicted physical component summary scores on the SF-36, while care recipient quality of life and caregiver role (negative significantly correlated with mental component summary scores. Relationship satisfaction and intrinsic rewards of caregiving were found to be important predictors of positive aspects of the caregiver role. Caregivers who viewed their relationship as less balanced in terms of give and take had significantly greater caregiver burden than those who viewed their relationship as more equitable. Conclusions The study highlights the importance of taking a broader approach to examining partner caregiving in the context of stroke, in terms of the caregiving relationship and their influence on the health and well-being of caregivers.

  10. Caregiving Youth Knowledge and Perceptions of Parental End-of-Life Wishes in Huntington's Disease.

    Science.gov (United States)

    Kavanaugh, Melinda S; Noh, Hyunjin; Zhang, Lixia

    2016-01-01

    Knowledge of patient end-of-life (EOL) wishes and discussions are vital for family caregivers, including children and youth who may be in caregiving roles ("young carers" or "caregiving youth"). However, little is known about caregiving youth awareness and perceptions of EOL issues. This study sought to explore caregiving youth knowledge of EOL wishes and their willingness for EOL discussions. Face-to-face interviews with 40 caregiving youth ages 10-20, who have a parent with Huntington's disease (HD), provided information about their knowledge of the presence of their ill parent's living will (LW) and durable power of attorney for health care (DPAHC), and willingness to talk with the parent about EOL choices and possibility of death. Less than one-half of the participants were aware of the parent's LW or DPAHC. Content analysis revealed themes in reasons to want or not want EOL discussion with the parent: respect for the parent's wishes, caregiving youths' opinion not valued, and avoidance of EOL issues. Themes also included reasons to not want discussion with the parent about possibility of death: protecting the parent, parent in denial, parent not ready, and realization of the terminal outcome. Findings suggest HD patients and their caregiving youth need support for open EOL discussions, and could benefit from educational programs and support groups around EOL issues.

  11. Factor structure of the Chinese version of the Meaning in Life Questionnaire among Hong Kong Chinese caregivers.

    Science.gov (United States)

    Chan, Wallace Chi Ho

    2014-08-01

    This study examines the factor structure of the Chinese version of the Meaning in Life Questionnaire (C-MLQ) in a sample of Hong Kong Chinese caregivers of patients with chronic illness (N = 223). Confirmatory factor analysis was performed to examine the factor structure. Findings confirm that, identical to the original version, C-MLQ showed the same two-factor structure: Presence and Search. Correlation between Presence and Search was found to be positive and moderate (r = .47). This study establishes empirically the same factor structure as the original version of MLQ among caregivers in Hong Kong. The relationship between Presence and Meaning is discussed in the contexts of Chinese culture and caregiving. Results suggest caregivers' continuing need for meaning in life. Medical social workers may help caregivers to integrate their caregiving experience with their sense of meaning in life and search for meaning in life to sustain their caregiving role.

  12. When worlds collide: elder caregiving poses new challenges for balancing work and life.

    Science.gov (United States)

    Rachor, M M

    1998-09-01

    Nearly one in four U.S. households (an estimated 22.4 million) are caring for elderly family members or friends; as the nation's population ages, more and more workers will take on elder caregiving responsibilities. As this trend continues, employers will face increasing concerns about lost productivity and many employees will struggle to balance the demands of work and caregiving responsibilities. To help resolve the situation, many employers may look to a comprehensive work/life program, which incorporates an intensive focus on elder-care issues, to help boost morale, improve employee productivity and job performance, and reduce stress and absenteeism associated with caregiving.

  13. Assessment of Health-Related Quality of Life among Primary Caregivers of Children with Autism Spectrum Disorders

    Science.gov (United States)

    Khanna, Rahul; Madhavan, S. Suresh; Smith, Michael J.; Patrick, Julie H.; Tworek, Cindy; Becker-Cottrill, Barbara

    2011-01-01

    The impact of caring for a child with autism on caregivers' health-related quality of life (HRQOL) is not fully understood. The objective of this study was to compare the HRQOL scores of caregivers of children with autism to those of the general US population and to identify the factors that influence HRQOL. Caregivers of children with autism had…

  14. Quality of life, health status and caregiver burden in Parkinson's disease: relationship to executive functioning.

    Science.gov (United States)

    Kudlicka, Aleksandra; Clare, Linda; Hindle, John V

    2014-01-01

    High-quality person-centred care for people with Parkinson's disease (PwPD) and their families relies on identifying and addressing factors that specifically impact on quality of life (QoL). Deficits in executive functions (EF) are common in Parkinson's disease, but their impact on PwPD and their caregivers is not well understood. The present study evaluated how EF contributes to QoL and health status for the PwPD and caregiver burden. Sixty-five PwPD completed measures of QoL, health status and EF, and 50 caregivers rated the EF of the PwPD and their own burden. Multiple regression analyses examined predictors of QoL (general life, health and movement disorders domains), health status and caregiver burden. Quality of life in the health and movement disorders domains was best explained by caregiver-rated EF, whereas QoL in the general life domain was best explained by level of depression. Health status was predicted by self-rated EF, with an objective EF measure also included in the regression model. Caregiver burden was best explained by caregiver-rated EF and disease severity, with general cognition and other factors also included in the regression model. Executive functions-related behavioural problems may contribute to QoL and health status in PwPD and affect caregiver burden. The findings support the view that the concepts of subjective QoL and self-assessed health status are only partially related and should not be seen as identical. Adequate strategies to reduce the impact of EF deficits are needed as this may have the potential to improve QoL in PwPD. Copyright © 2013 John Wiley & Sons, Ltd.

  15. The Effect of Care Instruction to Family Caregivers of Children with Cerebral Palsy on Life Quality of Care Givers

    Directory of Open Access Journals (Sweden)

    Nikta Hatami-Zadeh

    2009-10-01

    Conclusion: Findings of this study showed that life quality of family caregivers promoted after instruction about how to do correct care on cerebral palsied children. therefore, the importance of family instruction can be concluded for better life of cerebral palsied child caregivers. It should be noted that the effectiveness of rehabilitation program for cerebral palsied children might have positive effects on life quality of their caregivers.

  16. Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

    Science.gov (United States)

    Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve

    2017-09-01

    People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

  17. Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life.

    Science.gov (United States)

    Polack, Sarah; Adams, Mel; O'banion, David; Baltussen, Marjolein; Asante, Sandra; Kerac, Marko; Gladstone, Melissa; Zuurmond, Maria

    2018-05-07

    To assess feeding difficulties and nutritional status among children with cerebral palsy (CP) in Ghana, and whether severity of feeding difficulties and malnutrition are independently associated with caregiver quality of life (QoL). This cross-sectional survey included 76 children with CP (18mo-12y) from four regions of Ghana. Severity of CP was classified using the Gross Motor Function Classification System and anthropometric measures were taken. Caregivers rated their QoL (using the Pediatric Quality of Life Inventory Family Impact Module) and difficulties with eight aspects of child feeding. Logistic regression analysis explored factors (socio-economic characteristics, severity of CP, and feeding difficulties) associated with being underweight. Linear regression was undertaken to assess the relationship between caregiver QoL and child malnutrition and feeding difficulties. Poor nutritional status was common: 65% of children aged under 5 years were categorized as underweight, 54% as stunted, and 58% as wasted. Reported difficulties with child's feeding were common and were associated with the child being underweight (odds ratio 10.7, 95% confidence interval 2.3-49.6) and poorer caregiver QoL (pnutritional status was evident. Among rural, low resource populations in Ghana, there is a need for appropriate, accessible caregiver training and support around feeding practices of children with CP, to improve child nutritional status and caregiver well-being. What this paper adds Malnutrition is very common among children with cerebral palsy in this rural population in Ghana. Feeding difficulties in this population were strongly associated with being underweight. Feeding difficulties were associated with poorer caregiver quality of life (QoL). Child nutritional status was not associated with caregiver QoL. © 2018 Mac Keith Press.

  18. Anxiety, depression and quality of life in patients with beta thalassemia major and their caregivers.

    Science.gov (United States)

    Yengil, Erhan; Acipayam, Can; Kokacya, Mehmet Hanifi; Kurhan, Faruk; Oktay, Gonul; Ozer, Cahit

    2014-01-01

    Mental health and health related quality of life is commonly affected in patients with chronic problems and their caregivers. In the present study, it was aimed to assess depression and anxiety in patients with beta thalassemia major (BTM) and in their caregivers; and to evaluate effects of these disorders on quality of life. The study was carried out in a district Hereditary Hemoglobinopathy Center and included 88 patients with BTM and 63 of their caregivers. All subjects were assessed using Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI) and Short Form-36 (SF-36) by a trained psychiatry resident via face-to-face interview. The BDI scores were 17 or above in 20.5% of the patients with BTM and 28.6% of their caregivers (P = 0.248). Of the patients with BTM, there were mild anxiety symptoms in 19.3%, while moderate and severe anxiety symptoms in 14.8% and 4.5%, respectively. Anxiety levels were similar between the patients with BTM and their caregivers (P = 0.878). It was found that BDI and BAI scores were negatively correlated to scores of physical health and mental health components of SF-36 in patients with BTM and their caregivers. In linear regression analysis, it was seen that depression affected physical and mental health of the patients with BTM and their caregivers regardless from anxiety. BTM leads an increase in the frequency of depression and anxiety in both patients and their caregivers, and affects negatively physical and mental components of quality of life.

  19. Quality of Life in Caregivers of Children and Adolescents with Intellectual Disabilities: Use of WHOQOL-BREF Survey

    Science.gov (United States)

    Lin, Jin-Ding; Hu, Jung; Yen, Chia-Feng; Hsu, Shang-Wei; Lin, Lan-Ping; Loh, Ching-Hui; Chen, Mei-Hua; Wu, Sheng-Ru; Chu, Cordia M.; Wu, Jia-Ling

    2009-01-01

    The present study based on World Health Organization quality of life (WHOQOL-BREF) scale to examine quality of life of the caregivers caring for their children/adolescents with intellectual disabilities in Taiwan, and the factors contributing to their quality of life. Structured interviews were conducted with 597 caregivers of children/adolescents…

  20. The Impact of Performance Appraisal, Reward System, Job Stress, and Work Life Conflict to Employee Performance

    OpenAIRE

    Rumambie, Yuliana Fransisca

    2014-01-01

    Employee Performance is an important part in a company or organization. It plays a very important role in an organization because performance of the company or organization largely depends on the performance of its employee. Recently, organizations realize that there are several factors that can affect employee performance. Several factors that can considered as the major determinants of employee performance, such as Performance Appraisal, Reward System, Job Stress, and Work life conflict. Th...

  1. Longitudinal study of appraisal at Three Mile Island: implications for life event research.

    Science.gov (United States)

    Goldsteen, R; Schorr, J K; Goldsteen, K S

    1989-01-01

    This study tests a path model which indicates the occurrence of appraisal following the accident at Three Mile Island (TMI). The model posits a causal relationship between trust in TMI-related authorities, perceived danger, perceived harm to health, and psychological distress. The implications of the findings for life event research are discussed in terms of the etiological significance of meaning, event consequences, and control.

  2. Determinants of quality of life in stroke survivors and their informal caregivers.

    Science.gov (United States)

    Jönsson, Ann-Cathrin; Lindgren, Ingrid; Hallström, Björn; Norrving, Bo; Lindgren, Arne

    2005-04-01

    We examined longitudinal changes of quality of life (QOL) covering physical and mental factors in an unselected group of stroke patients and their informal caregivers. Our hypothesis was that informal caregivers would have better QOL than patients at both follow-ups, and that changes, if any, would be related to the patients' status. QOL of 304 consecutive stroke patients and their 234 informal caregivers from the population-based Lund Stroke Register was assessed 4 months after stroke onset with the Short Form 36 (SF-36) questionnaire. SF-36 was repeated for both groups after 16 months together with Mini Mental State Examination (MMSE) and Geriatric Depression Scale (GDS-20) for patients. The patients' mean QOL scores improved between 4 and 16 months after stroke in the socio-emotional and mental SF-36 domains and decreased in the domain physical function. Multivariate analyses showed that the patients' most important determinants of QOL after 16 months were GDS-20 score, functional status, age, and gender. Informal caregivers had better QOL than patients except for the domain role emotional and the mental component summary. The caregivers' most important determinants of QOL were their own age and the patients' functional status. Our study highlights depressive symptoms in determining QOL of stroke patients. Despite self-perceived deterioration in physical function over time, several other components of QOL improved, suggesting internal adaptation to changes in their life situations. Informal caregivers of stroke patients may be under considerable strain as suggested by their lower emotional-mental scores.

  3. Measuring comfort in caregivers and patients during late end-of-life care.

    Science.gov (United States)

    Novak, B; Kolcaba, K; Steiner, R; Dowd, T

    2001-01-01

    The purpose of this study was to test several formats of end-of-life comfort instruments for patients and closely involved caregivers. Kolcaba's Comfort Theory was the theoretical framework utilized. Different response formats for two end-of-life (EOL) comfort questionnaires (for patients and caregivers, respectively), and horizontal and vertical visual analog scales for total comfort (TC) lines were compared in two phases. Evaluable data were collected from both members of 38 patient-caregiver dyads in each phase. Suitable dyads were recruited from two hospice agencies in northeastern Ohio. Cronbach's alpha for the EOL comfort questionnaire (six response Likert-type format) tested during phase I for patients was .98 and for caregivers was .97. Test-retest reliability for the vertical TC line tested during phase I for patients was .64 and for caregivers was .79. The implications of this study for nursing practice and research are derived from the American Nursing Association (ANA) position statement about EOL care, which states that comfort is the goal of nursing for this population. These instruments will be useful for assessing comfort in actively dying patients and comfort of their caregivers as well as for developing evidence-based practice for this population.

  4. The activities and quality of life of caregivers of patients with chronic diseases

    Directory of Open Access Journals (Sweden)

    Letícia Zanetti Marchi Altafim

    2015-07-01

    Full Text Available Introduction: With the increase of the elderly population in our country and, simultaneously, the increasing morbidity rate of chronic-degenerative disease in general, the number of people seeking for attendance at day care centers and hospitals has also increased. Most of the time, these people are also dependent, when they return home, on the care provided by family members: the caregivers. To prevent and treat the problems caused by the stress factors among caregivers contribute to reduce or delay their hospitalization. In addition, improvement on the caregivers’ quality of life could allow them to better help the patients. In this context, this research tried to understand the reality of the lives of caregivers of chronically ill patients, and with this knowledge, implement and evaluate the effectiveness of an intervention proposal. Objective: To attenuate the stress conditions of care activities. Method: The research used interviews with caregivers; these interviews were taped and later transcribed to analyze the content of answers and elaborate the intervention plan, which, in this case, was a course. The course consisted of informative aspects on the disease and daily life activities, as well as the formative aspect on self-knowledge. A quality of life instrument named Caregiver Burden Scale was also applied. After the intervention (course, the Scale was once more applied to verify the data and check for efficacy. Results: Results show the importance of the intervention on the caregivers’ quality of life.

  5. A new instrument to measure quality of life of heart failure family caregivers.

    Science.gov (United States)

    Nauser, Julie A; Bakas, Tamilyn; Welch, Janet L

    2011-01-01

    Family caregivers of heart failure (HF) patients experience poor physical and mental health leading to poor quality of life. Although several quality-of-life measures exist, they are often too generic to capture the unique experience of this population. The purpose of this study was to evaluate the psychometric properties of the Family Caregiver Quality of Life (FAMQOL) Scale that was designed to assess the physical, psychological, social, and spiritual dimensions of quality of life among caregivers of HF patients. Psychometric testing of the FAMQOL with 100 HF family caregivers was conducted using item analysis, Cronbach α, intraclass correlation, factor analysis, and hierarchical multiple regression guided by a conceptual model. Caregivers were predominately female (89%), white, (73%), and spouses (62%). Evidence of internal consistency reliability (α=.89) was provided for the FAMQOL, with item-total correlations of 0.39 to 0.74. Two-week test-retest reliability was supported by an intraclass correlation coefficient of 0.91. Using a 1-factor solution and principal axis factoring, loadings ranged from 0.31 to 0.78, with 41% of the variance explained by the first factor (eigenvalue=6.5). With hierarchical multiple regression, 56% of the FAMQOL variance was explained by model constructs (F8,91=16.56, Pinstrument that has evidence of reliability and validity in HF family caregivers. Physical, psychological, and social well-being can be measured with 4-item subscales. The FAMQOL scale could serve as a valuable measure in research, as well as an assessment tool to identify caregivers in need of intervention.

  6. Psychometric testing of the Caregiver Quality of Life Index-Cancer scale in an Iranian sample of family caregivers to newly diagnosed breast cancer women.

    Science.gov (United States)

    Khanjari, Sedigheh; Oskouie, Fatemeh; Langius-Eklöf, Ann

    2012-02-01

    To translate and test the reliability and validity of the Persian version of the Caregiver Quality of Life Index-Cancer scale. Research across many countries has determined quality of life of cancer patients, but few attempts have been made to measure the quality of life of family caregivers of patients with breast cancer. The Caregiver Quality of Life Index-Cancer scale was developed for this purpose, but until now, it has not been translated into or tested in the Persian language. Methodological research design. After standard translation, the 35-item Caregiver Quality of Life Index-Cancer scale was administered to 166 Iranian family caregivers of patients with breast cancer. A confirmatory factor analysis was carried out using LISREL to test the scale's construct validity. Further, the internal consistency and convergent validity of the instrument were tested. For convergent validity, four instruments were used in the study: sense of coherence scale, spirituality perspective scale, health index and brief religious coping scale. The confirmatory factor analysis resulted in the same four-factor structure as the original, though, with somewhat different item loadings. The Persian version of the Caregiver Quality of Life Index-Cancer scales had satisfactory internal consistency (0·72-0·90). Tests of convergent validity showed that all hypotheses were confirmed. A hierarchical multiple regression analysis additionally confirmed the convergent validity between the total Caregiver Quality of Life Index-Cancer score and sense of coherence (β = 0·34), negative religious coping (β = -0·21), education (β = 0·24) and the more severe stage of breast cancer (β = 0·23), in total explaining 41% of the variance. The Persian version of the Caregiver Quality of Life Index-Cancer scale could be a reliable and valid measure in Iranian family caregivers of patients with breast cancer. The Persian version of the Caregiver Quality of Life Index-Cancer scale is simple to

  7. The impact of extended half-life versus conventional factor product on hemophilia caregiver burden.

    Science.gov (United States)

    Schwartz, Carolyn E; Powell, Victoria E; Su, Jun; Zhang, Jie; Eldar-Lissai, Adi

    2018-05-01

    Extended half-life factor products have reduced annualized bleeding rates in hemophilia patients. The impact of extended half-life versus conventional factor products on hemophilia caregiver burden has not been investigated. This study aimed to evaluate caregiver burden in extended half-life versus conventional factor products for hemophilia A and B. This cross-sectional web-based study of caregivers of people with hemophilia A or B was recruited from a panel research company and by word of mouth. Participants completed the Hemophilia Caregiver Impact measure, the PedsQL Family Impact Module (PedsQL), and the Work Productivity and Activity Impairment Questionnaire (WPAI). We also collected demographic, insurance coverage, and medical information related to the hemophilia patient(s). Burden differences were assessed using linear regression and matched cohort analyses. The sample (n = 448) included 49 people who were caring for people on extended half-life factor products. Worse caregiver burden was associated with more infusions per week and more bleeds in the past 6 months. Regression analyses suggested that caring for someone who is on a extended half-life factor product is associated with lower emotional impact (β = - 0.11, p factor product had lower Emotional Impact and Practical Impact scores (t = - 2.95 and - 2.94, respectively, p factor product infusions of extended half-life factor products appears to reduce the emotional distress and practical burden of caregiving. Future work should evaluate the longitudinal impact.

  8. Family caregiver learning--how family caregivers learn to provide care at the end of life: a qualitative secondary analysis of four datasets.

    Science.gov (United States)

    Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda

    2013-07-01

    Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data included qualitative interviews with 156 family caregivers of dying people. Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

  9. Health-related quality of life in caregivers of patients with Alzheimer's disease.

    Science.gov (United States)

    Garzón-Maldonado, F J; Gutiérrez-Bedmar, M; García-Casares, N; Pérez-Errázquin, F; Gallardo-Tur, A; Martínez-Valle Torres, M D

    2017-10-01

    Informal caregivers of patients with Alzheimer's disease (AD) have a poor health-related quality of life (HRQOL). HRQOL is an increasingly common user-focused outcome measure. We have evaluated HRQOL longitudinally in caregivers of AD patients at baseline and at 12 months. Ninety-seven patients diagnosed with AD according to the NINCDS-ADRDA (National Institute of Neurological and Communicative Disorders and Stroke, and Alzheimer's Disease and Related Disorders Association) and their 97 respective primary caregivers were included in the study. We analysed the following data at the baseline visit: sociodemographic data of both patients and carers, patients' clinical variables, and data related to the healthcare provided to patients by carers. HRQOL of caregivers was measured with the SF-36 questionnaire at baseline and 12 months later. At 12 months, primary caregivers scored lower in the 8 subscales of the SF-36 questionnaire; differences were statistically significant in all dimensions except for 'physical function' and 'social function'. Baseline scores in our sample were lower than those of the general population. 'Vitality' is the dimension that presented the lowest scores. HRQOL in caregivers of patients with Alzheimer's disease deteriorates over time and is poorer than that of the age- and sex-matched general population. Copyright © 2016 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

  10. Effect of the functional caregivers Plan implementation on the anxiety and quality of life for the family caregivers of dependent people with neurological disorders

    Directory of Open Access Journals (Sweden)

    Ruth Molina Fuillerat

    2012-01-01

    Full Text Available In January 2005 the Andalusian Health Service Improvement Plan prepared: Caring for the Caregiver include actions to be taken to promote equity, to recognize and facilitate the work of family carers. From our perspective of formal caregivers, it seems necessary to consider not only themselves need care patients with the disease, but also makes it mandatory caring individuals usually relatives, facilitators of the provision of care. In the Unit of Neurology, the daily observation of these family situations, has guided and network relationship between the two formal and informal systems of care, and we have tried the approach of the caregivers as clients to treat them as co-participants the experience of caring. Hypothesis: The Implementation of Functional Plan caregiver positive impact on hospitalization decreased anxiety and improved quality of life of caregivers of a dependent patient. Overall objective: To determine the effect of applying functional caregiver Plan on anxiety and quality of life of family caregivers of dependent people with neurological disorders. Study Design: Experimental study of the clinical trial such an intervention group and a control group randomly assigned.

  11. Family functioning in severe brain injuries: correlations with caregivers' burden, perceived social support and quality of life.

    Science.gov (United States)

    Tramonti, Francesco; Bonfiglio, Luca; Di Bernardo, Carolina; Ulivi, Chiara; Virgillito, Alessandra; Rossi, Bruno; Carboncini, Maria Chiara

    2015-01-01

    Severe brain injuries have long-term consequences on functional status and psychosocial functioning. Family life can be greatly influenced as well, and features of high caregiver burden can emerge. Although the data on caregivers' distress are constantly increasing, less information is available about the role of family functioning. Thirty caregivers of hospitalised patients with severe brain injuries received questionnaires for the evaluation of caregiver burden, family functioning and perceived social support. A semi-structured interview was performed for the evaluation of quality of life. Family cohesion and adaptability positively correlated with caregivers' quality of life and perceived social support. Partner caregivers' scores were significantly higher on the time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden.

  12. Quality of life in caregivers of patients with schizophrenia: A literature review

    Directory of Open Access Journals (Sweden)

    Miranda-Castillo Claudia

    2009-09-01

    Full Text Available Abstract Background A couple of decades ago, hospitals or psychiatric institutions were in charge of caring for patients with schizophrenia; however, nowadays this role is performed by one or more patient's relatives. Evidence shows that informal caregivers experience negative changes in their quality of life (QOL. The aim of this study is to review the main factors associated with the QOL of caregivers of people with schizophrenia. Methods A search through databases from journals published last decade between 1998 and 2008 was performed. In accordance with the inclusion criteria, titles and abstracts of citations obtained from the search were examined independently by two authors and irrelevant articles discarded. The full text of those studies considered relevant by either reviewer were obtained and assessed independently. Where differences of opinion rose they were resolved by discussion. Out of the 258 references, 37 were included in the review. Studies which assessed factors associated with caregivers of people with schizophrenia's quality of life were included and the information summarized. Results Evidence suggest that physical, emotional and economic distress affect negatively caregiver's QOL as a result of a number of unfulfilled needs such as, restoration of patient functioning in family and social roles, economic burden, lack of spare time, among other factors. Conclusion Decreased QOL may be associated with caregivers' burden, lack of social support, course of the disease and family relationships problems. In addition, in developing countries, QOL is affected by caregivers' economic burden. High quality research is needed in order to identify factors associated with QOL over time and testing the efficacy of interventions aiming to improve QOL in caregivers of patients with schizophrenia.

  13. Quality of life in caregivers of ADHD children and Diabetes patients

    Directory of Open Access Journals (Sweden)

    Maria Conceição do Rosario

    2016-07-01

    Full Text Available Introduction: Studies have shown that the presence of ADHD causes great impairment in academic, social and professional activities, as well as in the quality of life (QoL of its patients. Similarly, the impact caused by other chronic disorders, such as diabetes, in the patient´s QoL has been emphasized in many studies. Despite its relevance, no study has yet investigated whether ADHD caregivers and diabetic patients would have similar QoL impairment. Objectives: This study was conducted in order to compare the QoL scores among ADHD caregivers and diabetic patients. Methods: We evaluated 63 caregivers of ADHD children treated at the Child and Adolescent Psychiatric Unit at the Federal University of São Paulo (UPIA-UNIFESP and 52 adult diabetic patients. Subjects were assessed with the World Health Organization quality of Life-Breef Version (WHOQOL-BREEF, the Beck and Hamilton depression scales, and the Adult Self-Report Scale. Results: When compared to the Brazilian normative data, ADHD caregivers had significantly lower scores in the social relations and environment WHOQOL domains. ADHD caregivers and diabetic patients had similar impairment in all WHOQOL domains, except for the physical domain. Conclusion: ADHD affects the QoL of the patient’s caregiver, with similar impairment when compared to the QoL of diabetic patients. These results emphasize the need for assessing QoL of the caregivers as part of the treatment strategies. They also emphasize the need for future studies with larger sample sizes comparing how the Qol is impacted in different chronic disorders.

  14. Quality of Life in Caregivers of ADHD Children and Diabetes Patients.

    Science.gov (United States)

    Andrade, Elisa Meirelles; Geha, Laysa Minella; Duran, Paula; Suwwan, Raphael; Machado, Felipe; do Rosário, Maria Conceição

    2016-01-01

    Studies have shown that the presence of attention-deficit hyperactivity disorder (ADHD) causes great impairment in academic, social, and professional activities as well as in the quality of life (QoL) of its patients. Similarly, the impact caused by other chronic disorders, such as diabetes, in the patient's QoL has been emphasized in many studies. Despite its relevance, no study has yet investigated whether ADHD caregivers and diabetic patients would have similar QoL impairment. This study was conducted in order to compare the QoL scores among ADHD caregivers and diabetic patients. We evaluated 63 caregivers of ADHD children treated at the Child and Adolescent Psychiatric Unit at the Federal University of São Paulo (UPIA-UNIFESP) and 52 adult diabetic patients. Subjects were assessed with the World Health Organization quality of Life-Bref Version (WHOQOL-BREF), the Beck and Hamilton depression scales, and the Adult Self-Report Scale. When compared to the Brazilian normative data, ADHD caregivers had significantly lower scores in the social relations and environment WHOQOL domains. ADHD caregivers and diabetic patients had similar impairment in all WHOQOL domains except for the physical domain. ADHD affects the QoL of the patient's caregiver, with similar impairment, when compared to the QoL of diabetic patients. These results emphasize the need for assessing QoL of the caregivers as part of the treatment strategies. They also emphasize the need for future studies with larger sample sizes comparing how the QOL is impacted in different chronic disorders.

  15. Mediating effects of burden on quality of life for caregivers of first-time stroke patients discharged from the hospital within one year.

    Science.gov (United States)

    Tsai, Yu-Hsia; Lou, Meei-Fang; Feng, Tsui-Hsia; Chu, Tsung-Lan; Chen, Ying-Jen; Liu, Hsueh-Erh

    2018-04-25

    Caregiver burden may be either a predictor or an outcome of caregiver quality of life (QoL). Patient or caregiver factors that directly affect caregiver QoL, predictors that are simultaneously shared with caregiver burden and QoL, and factors that affect caregiver QoL through caregiver burden are not well understood. This study explored predictors of caregiver QoL and identified whether caregiver burden is a mediator for caregivers of first-time stroke patients. This is a cross-sectional study. We recruited first-time stroke patients who had been discharged from the hospital within 1 year. We screened caregivers with two major inclusion criteria: age > 20 years old and being the family member who provides the most patient-care hours out of all family caregivers. Caregiver burden (Caregiver Strain Index, CSI), QoL (Caregiver Quality of Life Index, CQLI), and patient and caregiver characteristics were assessed with structured questionnaires. Multiple-regression and bootstrap analysis were conducted for data analysis. A total of 126 caregivers completed the questionnaires. Higher caregiver burdens, lower caregiver education level, lower self-rated health, lower monthly family income, and spouses who were responsible for medical fees were significant predictors of lower caregiver QoL. Poor self-rated health and monthly family income of $ 666 USD or below were the strongest predictors of caregiver QoL. Spouses who were responsible for medical fees and lower monthly family income had direct negative effects on caregiver QoL, but these factors exhibited no indirect mediating effect between caregiver characteristics and QoL through caregiver burden as a mediator. Caregiver education level at or below elementary school and poor or fair self-rated-health had direct negative effects on caregiver QoL, which were mediated by caregiver burden. Our study indicated predictors of caregiver QoL and the relationships with caregiver burden among first-time stroke survivors in the

  16. The relationships among Muslim Uyghur and Kazakh disabled elders' life satisfaction, activity of daily living, and informal family caregiver's burden, depression, and life satisfaction in far western China: A structural equation model.

    Science.gov (United States)

    Wang, Wen Ting; He, Bin; Wang, Yu Huan; Wang, Mei Yan; Chen, Xue Feng; Wu, Fu Chen; Yang, Xue

    2017-04-01

    1 Hypothesis Disabled elders' activities of daily living, caregiver burden, caregiver depression, and caregivers' life satisfaction are significantly related to the life satisfaction of elderly people with disability. 2 Hypothesis There are direct and indirect effects between the life satisfaction of elders, disabled elders' activities of daily living, and family caregivers' factors. This study explored the interrelationships of disabled elders' life satisfaction and activities of daily living, caregivers' factors (burden, depression, and life satisfaction) through a structural equation model. In total, 621 dyads of disabled elders and informal family caregivers completed questionnaires during face-to-face interviews in Xinjiang Uyghur Autonomous Region from September 2013 to January 2014. Activity of daily living exerted a direct effect on life satisfaction of disabled elders and 30.4% indirect effect through caregivers' factors. Caregiver burden had a 60.0% direct effect on life satisfaction of disabled elders and a 40.0% indirect effect through the caregiver depression. Caregiver depression showed 76% direct effect on life satisfaction of disabled elders and 24% indirect effect through caregivers' life satisfaction. Direct relationships between activity of daily living and caregiver burden, caregiver burden and caregiver depression, and caregiver depression and caregivers' life satisfaction were observed. Activity of daily living had a 91.3% indirect effect on caregiver depression mediated by caregiver burden; caregiver burden had a 40.0% indirect effect on caregivers' life satisfaction mediated by caregiver depression. Results provide useful information for nurses and policymakers and shed light on the need to consider caregivers' factors in improving care recipients' life satisfaction. © 2017 John Wiley & Sons Australia, Ltd.

  17. Aging Parents of Adults With Disabilities: The Gratifications and Frustrations of Later-Life Caregiving.

    Science.gov (United States)

    Greenberg, Jan S.; And Others

    1993-01-01

    Used stress process model to investigate impact of later-life caregiving on 105 mothers of adult children with mental illness and 208 mothers of adult children with mental retardation. Mothers of persons with mental illness reported higher levels of frustrations and lower levels of gratifications. Adult child's behavior problems were strongest…

  18. Effect of a multidisciplinary supportive program for family caregivers of patients with heart failure on caregiver burden, quality of life, and depression: A randomized controlled study.

    Science.gov (United States)

    Hu, Xiaolin; Dolansky, Mary A; Su, Yonglin; Hu, Xiuying; Qu, Moying; Zhou, Lingjuan

    2016-10-01

    Caregivers of patients with heart failure experience burden and negative health outcomes. Adequate support for family caregivers improves their well-being and the quality of care provided to the patients. However, little is known about the benefits of interventions for caregivers of patients with heart failure in China. To test the effects of a multidisciplinary supportive program for family caregivers on caregiver burden, quality of life, and depression. A randomized controlled design with repeated measures was used in this study. A total of 118 participants were randomized into experimental (n=59) and control groups (n=59) from May to December 2014 in one hospital in Chengdu, People's Republic of China. Participants in the experimental group received a 3-month multidisciplinary supportive program, consisting of three 60-min sessions of group classes, three 30-min peer support groups, and regular telephone follow-ups and consultations, while participants in the control group received usual care only. Outcomes were caregiver burden, quality of life, and depression. Data were collected at baseline, post-test (3 months after discharge), and 3 months after post-test (6 months after discharge). The repeated measures analysis of variance was used to examine the effects of groups, changes over time, and time-group interaction on outcome variables. There were significant improvements in caregiver burden, mental health, and depression after post-test and 3 months after post-test in the experimental group. However, there was no significant improvement in caregivers' physical health at either 3 or 6 months following discharge. A multidisciplinary supportive program for caregivers of heart failure patients had positive effects and provides a unique perspective of an intervention considering Chinese culture and customs. Copyright © 2016 Elsevier Ltd. All rights reserved.

  19. Differences on psychosocial outcomes between male and female caregivers of children with life-limiting illnesses.

    Science.gov (United States)

    Schneider, Monica; Steele, Rose; Cadell, Susan; Hemsworth, David

    2011-06-01

    This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a) determine if there were gender differences and (b) identify gender-specific correlations among these outcomes. Findings suggest that significant gender differences exist. Women reported higher average scores compared with men for meaning in caregiving, depression, burden, and posttraumatic growth and lower average scores for optimism. Correlations also revealed some significant differences. Health care professionals need to be aware of gender differences and tailor their interventions appropriately. Copyright © 2011 Elsevier Inc. All rights reserved.

  20. Trajectories of health-related quality of life among family caregivers of individuals with dementia: A home-based caregiver-training program matters.

    Science.gov (United States)

    Kuo, Li-Min; Huang, Huei-Ling; Liang, Jersey; Kwok, Yam-Ting; Hsu, Wen-Chuin; Liu, Chin-Yi; Shyu, Yea-Ing L

    To determine distinct courses of change in health-related quality of life (HRQoL) among family caregivers of individuals with dementia and how participating in a home-based caregiver-training program affects the probability of belonging to each course. Sixty three caregivers were in the intervention group, and 66 caregivers were in the control group of a single-blinded randomized clinical trial. Two distinct trajectories of HRQoL were identified: a well-functioning trajectory and a poor-functioning trajectory. Caregivers who received the training program were more likely than those who did not have a well-functioning trajectory of HRQoL over 18 months. This trajectory included bodily pain (b = 1.02, odds ratio [OR] = 2.76), general health perception (b = 1.28, OR = 3.60), social functioning (b = 1.12, OR = 3.05), vitality (b = 1.51, OR = 4.49), general mental health (b = 1.08, OR = 2.94), and mental component summary (b = 1.27, OR = 3.55). Home-based caregiver training can be considered as part of the protocol for managing patients with dementia and their caregivers. NCT02667951. Copyright © 2016 Elsevier Inc. All rights reserved.

  1. Quality of Life in Children with Thalassemia and their Caregivers in India.

    Science.gov (United States)

    Sharma, Sapna; Seth, Bageshree; Jawade, Prashant; Ingale, Madhavi; Setia, Maninder Singh

    2017-03-01

    To assess and compare the Quality of Life (QOL) of children with beta-thalassemia major on regular transfusion therapy with normal children, and of the caregivers of children with beta-thalassemia major to that of caregivers of normal children. A cross-sectional comparison of QOL in 75 thalassemic and 80 non-thalassemic children was conducted using the PedsQL™ 4.0 generic core scale. Also self-rated health was assessed in their caregivers using Short Form-36 Health Survey. The total QOL score according to child-self report [83.7 (10.8) vs. 97.6 (3.3); p < 0.001] and parent-proxy report [84.2 (11.9) vs. 96.7 (3.5); p < 0.001] was significantly lower in cases as compared with controls. It was found that a significantly higher proportion of caregivers of cases reported poor health compared with caregivers of controls (29.2% vs. 2.5%, p < 0.001). Even after adjusting for age, sex, socio-economic status, and total QOL score by the parent, it was found that caregivers of thalassemic children were significantly more likely to report poor health compared with those of controls (odds ratio: 15.8, 95% confidence intervals: 2.8-89.9). Health Related QOL is significantly affected in children with beta-thalassemia major on regular transfusion across all age groups, gender and socio-economic classes and also in their caregivers.

  2. [Effectiveness of non-pharmacological interventions in the quality of life of caregivers of Alzheimer].

    Science.gov (United States)

    Amador-Marín, Bárbara; Guerra-Martín, María Dolores

    Explore the effectiveness of non-pharmacological interventions to improve the quality of life of family caregivers of Alzheimer's patients. We conducted a systematic review, in pairs, in the following databases: PubMed, Scopus, CINAHL, PsycINFO, WOS, Cochrane Library, IME, Cuiden Plus and Dialnet. Inclusion criteria were: 1. Studies published between 2010-2015. 2. Language: English, Portuguese and Spanish. 3. Randomized controlled clinical trials. 4. Score greater than or equal to 3 on the Jadad scale. 13 studies were included. Four performed a psychosocial intervention with family caregivers, three psychotherapeutic, two psychoeducational, two multicomponent, one educational and another with mutual support groups. The tools to assess quality of life: three studies used the Health Status Questionnaire (HSQ), three EuroQol-5D (two only used the EVA), two health questionnaire SF-36, two WHOQOL-BREF, two Quality of Life SF-12 and one Perceived Quality of Life Scale (PQoL). Regarding the effectiveness of non-pharmacological interventions, five studies obtained favorable results in the quality of life after psychotherapeutic interventions and community-type multicomponent training. The diversity of non-pharmacological interventions used and contents, differences in the number of sessions and hours, and variability of valuation tools used to measure quality of life of family caregivers, leads us to reflect on the appropriateness to standardize criteria, for the sake to improve clinical practice. Copyright © 2016 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

  3. Effects of Art Therapy Using Color on Purpose in Life in Patients with Stroke and Their Caregivers

    OpenAIRE

    Kim, Mi Kyoung; Kang, Sung Don

    2012-01-01

    Purpose Patients with stroke suffer from physical disabilities, followed by mental instability. Their caregivers also suffer from mental instability. The present study attempted to address the degree and the change of the level of Purpose in Life (PIL) in patients with stroke and caregivers by applying art therapy using colors. Materials and Methods Twenty-eight stroke patients with a good functional recovery or a moderate disability and their 28 caregivers were selected and evaluated. The pe...

  4. The Effects of the MORE Wisdom Resources on Spousal Caregivers' Life Satisfaction: An Application of the Resilience Model.

    Science.gov (United States)

    Kim, Seungyoun; Knight, Bob G

    2017-01-01

    Models of resilience suggest that psychosocial resources and their interactions facilitate resilience while experiencing life challenges of caregiving. The MORE wisdom resources (sense of Mastery, Openness to experience, Reflective attitude, and Emotion regulation) have been suggested as possible personal resources of resilience that predict positive health outcomes of caregivers. Applying a model of resilience, this study examined the direct and indirect effects of the three of the MORE wisdom resources (sense of Mastery, Openness to experience, and Emotion regulation) on caregiving spouses' life satisfaction and perceived physical health. Using data from the survey of Midlife in the United States, caregiving spouses (n = 114) and matched non-caregivers (n = 114) were included. We compared the direct and indirect effects of the wisdom resources on life satisfaction and physical health between the two groups. The simple mediation model proposed in 2008 by Preacher and Hayes revealed that openness to experience was directly associated with better life satisfaction among caregiving spouses. Sense of mastery and emotion regulation had indirect effects on life satisfaction through spousal support. The effects the wisdom resources on caregiving spouses' perceived physical health were not found. This study demonstrated that the three of the MORE wisdom resources are possible personal resilience factors influencing life satisfaction among caregiving spouses. Moreover, the study showed how spousal support mediates the relationship between the wisdom resources and life satisfaction. Interventions aiming to increase life satisfaction among caregiving spouses should focus on increasing both personal and environmental resources and strengthening the relationship of the caregiver and care recipient.

  5. Quality of life in Alzheimer disease: a comparison of patients' and caregivers' points of view.

    Science.gov (United States)

    Zucchella, Chiara; Bartolo, Michelangelo; Bernini, Sara; Picascia, Marta; Sinforiani, Elena

    2015-01-01

    Unlike in other chronic diseases, the Quality of Life (QoL) of patients affected by Alzheimer Disease (AD) has not been well established, primarily because of the difficulties stemming from the study of patients with cognitive disorders. Because no cure is currently available for AD, the optimization of QoL represents the best possible outcome attainable in all stages of disease, making QoL assessment mandatory. This study identified variables related to patients' QoL and examined the agreement between patients' and caregivers' QoL ratings. A total of 135 dyads (patient and principal caregiver) were enrolled in the study. Patients' QoL evaluations showed a negative relationship with depressive mood and a positive relationship with Activities of Daily Living (ADL), whereas caregivers' QoL ratings showed a negative relationship with patients' depressive mood and behavioral disturbances. Caregivers tended to underestimate patients' QoL compared with the patients' own self-evaluations, with patients' dependency in performing ADL and behavioral disorders as well as caregivers' burdens and depression being the main factors associated with the discrepancy in these evaluations. These findings suggest that the use of proxies as a substitute for the self-report of QoL data should be treated with caution, always accounting for the presence of potential bias.

  6. Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: a randomized controlled trial.

    NARCIS (Netherlands)

    Graff, M.J.L.; Vernooij-Dassen, M.J.F.J.; Thijssen, M.; Dekker, J.; Hoefnagels, W.H.L.; Olde Rikkert, M.G.M.

    2007-01-01

    BACKGROUND: Cure of dementia is not possible, but quality of life of patients and caregivers can be improved. Our aim is to investigate effects of community occupational therapy on dementia patients' and caregivers' quality of life, mood, and health status and caregivers' sense of control over life.

  7. Health-related Quality of Life in Children With Prune-belly Syndrome and Their Caregivers.

    Science.gov (United States)

    Arlen, Angela M; Kirsch, Susan S; Seidel, Natan E; Garcia-Roig, Michael; Smith, Edwin A; Kirsch, Andrew J

    2016-01-01

    To compare health-related quality of life (HRQoL) in children with prune-belly syndrome (PBS) and their caregivers to healthy controls, as children and adolescents with PBS face numerous potential physical and psychosocial challenges. Study participants completed the Pediatric Quality of Life Inventory Generic Core Scales (PedsQL) 4.0 generic core scales (children) or Quality of Life Enjoyment and Satisfaction Questionnaire Short Form (Q-LES-Q-SF) (caregivers) in an online, anonymous format. The PedsQL 4.0 is a 23-item, age-adjusted, validated questionnaire that assesses physical, emotional, social, and school functioning in pediatric patients. The Q-LES-Q-SF is a validated, self-report measure that assesses various areas of daily functioning in adults. PedsQL 4.0 was completed by 32 children with PBS. Individual physical (66.3 ± 20 vs 84.4 ± 17.3; P < .0001), emotional (68.4 ± 23.4 vs 80.9 ± 19.6; P < .01), social (63.1 ± 21.3 vs 87.4 ± 17.2; P  <  .0001), and school (53 ± 21.7 vs 78.6 ± 20.5; P < .0001) functioning scales were all significantly lower than in healthy children. Nineteen caregivers completed the Q-LES-Q-SF. Caregivers had a mean raw score of 54.8 ± 9.6, which was significantly lower (P  =  .02) than the comparative healthy adult cohort (59.8 ± 11.3). PBS profoundly impacts HRQoL in children, negatively affecting physical, emotional, social, and school functioning. Caregivers of PBS patients also report an overall lower quality of life, highlighting the challenges that families with chronically ill children often face. Copyright © 2015 Elsevier Inc. All rights reserved.

  8. Predictors of family caregiver ratings of patient quality of life in Alzheimer disease: cross-sectional results from the Canadian Alzheimer's Disease Quality of Life Study.

    Science.gov (United States)

    Naglie, Gary; Hogan, David B; Krahn, Murray; Black, Sandra E; Beattie, B Lynn; Patterson, Christopher; Macknight, Chris; Freedman, Morris; Borrie, Michael; Byszewski, Anna; Bergman, Howard; Streiner, David; Irvine, Jane; Ritvo, Paul; Comrie, Janna; Kowgier, Matthew; Tomlinson, George

    2011-10-01

    To assess whether the core symptoms of Alzheimer disease (AD) and caregiver factors consistently predict family caregiver ratings of patient quality of life (QOL) as assessed by a variety of QOL measures in a large national sample. : Cross-sectional. Fifteen dementia and geriatric clinics across Canada. : Family caregivers (n = 412) of community-living patients with AD of all severities. Caregiver ratings of patient QOL using three utility indexes, the European Quality of Life-5 Dimensions, Quality of Well-Being Scale and Health Utilities Index; a global QOL visual analogue scale; a disease-specific measure, the Quality of Life-Alzheimer's Disease; and a generic health status measure, the Short Form-36. Patient cognition was assessed with the cognitive subscale of the Alzheimer's Disease Assessment Scale and Mini-Mental State Examination, function with the Disability Assessment for Dementia, and behavioral and psychological symptoms with the Neuropsychiatric Inventory and the Geriatric Depression Scale. Caregiver burden was assessed with the Zarit Burden Interview and caregiver depression with the Center for Epidemiologic Studies Depression scale. One-way analysis of variance and fully adjusted multiple linear regression were used to assess the relationship between patient dementia symptom and caregiver variables with QOL ratings. In multivariable analyses, caregiver ratings of patient function and depressive symptoms were the only consistent independent predictors of caregiver-rated QOL across the QOL measures. Caregiver ratings of patient function and depression were consistent independent predictors of caregiver-rated QOL, using a spectrum of QOL measures, while measures of patient cognition and caregiver burden and depression were not. These findings support the continued use of caregiver ratings as an important source of information about patient QOL and endorse the inclusion in AD clinical trials of caregiver-rated measures of patient function, depression

  9. Benefits and burdens: family caregivers' experiences of assistive technology (AT) in everyday life with persons with young-onset dementia (YOD).

    Science.gov (United States)

    Holthe, Torhild; Jentoft, Rita; Arntzen, Cathrine; Thorsen, Kirsten

    2017-09-11

    People with dementia and their family caregivers may benefit from assistive technology (AT), but knowledge is scarce about family carers' (FC) experiences and involvement in the use of AT in everyday life. To examine the FC roles and experiences with AT as means of supporting people with young onset-dementia (YOD). Qualitative interview study with follow-up design. Repeated semi-structured interviews were conducted with 13 FC of people with YOD, participating in an ongoing intervention study investigating the families' use and experiences of AT in everyday life. Six main themes emerged: (1) timely information about AT; (2) waiting times; (3) AT incorporated into everyday living; (4) AT experienced as a relief and burden; (5) appraisal of AT qualities and (6) the committed caregiver. The study found benefits for the FC, especially with simply designed AT, but also several barriers for successful use. A committed caregiver is vital throughout the process. Users will need professional advice and support, and occupational therapists may have a significant role in the process. Interventions implementing AT must be based on analysis of the needs of the person with YOD and the carers: their capabilities, preferences, embodied habits, and coping strategies. Implications for Rehabilitation Committed family carers (FC) play an important, often decisive, role in providing support for the person with young-onset dementia (YOD, onset <65 years) to use and benefit from the AT. The simpler the AT, the better. The AT should be introduced at "the right time", before the cognitive and adaptive reduction is too great. The "window" for implementation may be short. AT has potential to ease caregiving and give relief for FC. However, many barriers, difficulties and problems must be attended to. A system for individualized support over time is necessary for implementing AT for this group.

  10. Burden, quality of life and distress of the main caregiver in head and neck, cervix and rectal cancer patients

    Directory of Open Access Journals (Sweden)

    Miguel I

    2017-03-01

    Full Text Available Purpose: Based on Portuguese experience, current practice does not focus sufficiently on the caregiver needs through caring of the cancer patient. Understanding the impact of different tumor types on caregiver burden, quality of life, and distress may help with organizing resources more efficiently to provide enhanced support for patients and caregivers. Methods: Ninety main caregivers of patients with cervix, rectal and head and neck cancer were interviewed at Instituto Português de Oncologia de Lisboa Francisco Gentil. The Portuguese versions of Zarit Burden Interview, Caregiver Quality of Life Index - Cancer (CQOLC Scale and the distress thermometer were used. Results: The majority of caregivers were female (76.7%, median age was 45.5years (20-79, 40% were spouses and 38.7% sons/daughters. Zarit Burden Interview average score was 25.2 ± 11.6, higher on head and neck cancer group. 59.5% of caregivers had moderate burden and no cases of severe burden. Mean quality of life score was 64.8 ± 15.8 which was lower in the head and neck group. Average distress score across the three groups was seven and rectal group presented a lower score than the other two groups. A subgroup analysis (gender, kinship relation, employment status and cohabitation before starting care of caregivers characteristics showed no statistical differences. Conclusion: There were little differences in the experience of caring within caregivers based on the three different cancer groups, although caregivers of patients with head and neck cancer scored consistently worse in the three scales studied. More efforts should be taken to optimize coping strategies for these caregivers, as well as non-cohabitant and active caregivers, who had a worse caring experience.

  11. Quality of Life, Depression, and Anxiety in Ventricular Assist Device Therapy: Longitudinal Outcomes for Patients and Family Caregivers.

    Science.gov (United States)

    Bidwell, Julie T; Lyons, Karen S; Mudd, James O; Gelow, Jill M; Chien, Christopher V; Hiatt, Shirin O; Grady, Kathleen L; Lee, Christopher S

    Patients who receive ventricular assist device (VAD) therapy typically rely on informal caregivers (family members or friends) to assist them in managing their device. The purpose of this study is to characterize changes in person-oriented outcomes (quality of life [QOL], depression, and anxiety) for VAD patients and their caregivers together from pre-implantation to 3 months post-implantation. This was a formal interim analysis from an ongoing prospective study of VAD patients and caregivers (n = 41 dyads). Data on person-oriented outcomes (QOL: EuroQol 5 Dimensions Visual Analog Scale; depression: Patient Health Questionnaire-8; anxiety: Brief Symptom Inventory) were collected at 3 time points (just prior to implantation and at 1 and 3 months post-implantation). Trajectories of change for patients and caregivers on each measure were estimated using latent growth modeling with parallel processes. Patients' QOL improved significantly over time, whereas caregiver QOL worsened. Depression and anxiety also improved significantly among patients but did not change among caregivers. There was substantial variability in change on all outcomes for both patients and their caregivers. This is the first quantitative study of VAD patient-caregiver dyads in modern devices that describes change in person-oriented outcomes from pre-implantation to post-implantation. This work supports the need for future studies that account for the inherent relationships between patient and caregiver outcomes and examine variability in patient and caregiver responses to VAD therapy.

  12. Effects of art therapy using color on purpose in life in patients with stroke and their caregivers.

    Science.gov (United States)

    Kim, Mi Kyoung; Kang, Sung Don

    2013-01-01

    Patients with stroke suffer from physical disabilities, followed by mental instability. Their caregivers also suffer from mental instability. The present study attempted to address the degree and the change of the level of Purpose in Life (PIL) in patients with stroke and caregivers by applying art therapy using colors. Twenty-eight stroke patients with a good functional recovery or a moderate disability and their 28 caregivers were selected and evaluated. The period of the study between the stroke and color therapy was more than 6 months. Patients and caregivers were divided into the color therapy (28) and control groups (28). A questionnaire, which measures the level of PIL was conducted separately for patients and caregivers prior to the first session of color therapy (2 hours per week, total 16 sessions). The final examination was performed 5 months after the last color therapy session. There was significant difference between before and after color therapy when the level of PIL was measured both in patients and caregivers (pcolor therapy group, compared with the control group (pcolor therapy progressed to the late phase, patients and caregivers applied increasing number of colors and color intensity. These results prove that color therapy will improve PIL of the patients with post-stroke disability and caregivers. Furthermore, color therapy would be a useful adjuvant for improving the quality of life of the patients with stroke and their caregivers.

  13. Predictors of the health-related quality of life of Chinese people with major neurocognitive disorders and their caregivers: The roles of self-esteem and caregiver's burden.

    Science.gov (United States)

    Young, Daniel Kim-Wan; Ng, Petrus Yat-Nam; Kwok, Timothy

    2017-12-01

    The present research study aimed to identify and compare the clinical and non-clinical factors that predict the self-reported and proxy-reported health-related quality of life (HRQoL) of people with major neurocognitive disorder (PwND) who are living at home in a Chinese society. A total of 57 Chinese PwND-family caregiver dyads that were using the services of local senior centers were recruited through a cross-sectional survey with convenience sampling. Each PwND and caregiver rated the PwND's HRQoL independently by using the Quality of Life-Alzheimer's disease measure. Additional measures included the Rosenberg Self-Esteem Scale (RSES), Index for Managing Memory Loss, Geriatric Depression Scale, Cornell Scale for Depression in Dementia and Zarit Burden Inventory. The results of hierarchical multiple linear regression analyses showed that the PwND's self-rated HRQoL and caregiver-rated HRQoL were found to be predicted by different clinical and non-clinical variables. In particular, the self-esteem of PwND had the highest predictive power for the self-rated HRQoL, whereas the caregiver burden is the only significant predictor for the caregiver-rated HRQoL. In the present study, the self-esteem of PwND and the caregiver's burden were found to be important factors predicting self-rated HRQoL and caregiver-rated HRQoL respectively, which is probably because of the influence of traditional Chinese cultural values. Thus, it is important for non-pharmacological interventions to address these special needs to promote HRQoL for this population. Geriatr Gerontol Int 2017; 17: 2319-2328. © 2017 Japan Geriatrics Society.

  14. Role of global stress in the health-related quality of life of caregivers: evidence from the Survey of the Health of Wisconsin.

    Science.gov (United States)

    Litzelman, Kristin; Skinner, Halcyon G; Gangnon, Ronald E; Nieto, F Javier; Malecki, Kristen; Witt, Whitney P

    2014-06-01

    Informal caregivers play a critical role in the care of individuals who are aging or have disabilities and are at increased risk for poor health outcomes. This study sought to determine whether and to what extent: (1) global stress and health-related quality of life (HRQoL) differed between caregivers and non-caregivers; (2) global stress mediated the relationship between caregiving status and HRQoL; and (3) caregiver strain (i.e., stress attributable to caregiving) was associated with worse HRQoL after accounting for global stress. Cross-sectional data were from the 2008-2010 Survey of the Health of Wisconsin, a representative sample of adults aged 21-74 years. Participants (n = 1,364) completed questionnaires about caregiving status, sociodemographics, global stress, and HRQoL. Staged generalized additive models assessed the impact of caregiving on HRQoL and the role of caregiver strain and global stress in this relationship. In the last 12 months, 17.2% of the sample reported caregiving. Caregivers reported worse mental HRQoL than non-caregivers (β -1.88, p = 0.02); global stress mediated this relationship (p stress (p stress, rather than caregiving per se, contributes to poor HRQoL among caregivers, above and beyond the effect of caregiving strain. Screening, monitoring, and reducing stress in multiple life domains presents an opportunity to improve HRQoL outcomes for caregivers.

  15. Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

    Directory of Open Access Journals (Sweden)

    Maria Clara Drummond Soares de Moura

    2015-01-01

    Full Text Available Objective The relationship between functional dependence and quality of life (QOL in Duchenne muscular dystrophy (DMD patients and burden and QOL in caregivers is not clear. This study investigated possible relationships between functional dependence/QOL of DMD patients and QOL/burden of caregivers. Method This study included 35 boys (6-17 years and respective caregivers (above 21 years. Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations and linear regressions were run to investigate relationships between the variables. Results The occurrence of lower QOL and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. The functional dependence of patients was not considered a determinant factor. Higher caregivers’ burden was related to lower caregivers’ QOL and to higher patients’ ages.

  16. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers.

    Science.gov (United States)

    Kaub-Wittemer, Dagmar; Steinbüchel, Nicole von; Wasner, Maria; Laier-Groeneveld, Gerhard; Borasio, Gian Domenico

    2003-10-01

    Non-invasive ventilation (NIV) is an efficient palliative measure for symptoms of chronic hypoventilation in patients with amyotrophic lateral sclerosis (ALS), and can also lengthen survival. A subset of ALS patients undergoes tracheostomy ventilation (TV) for life prolongation. We investigated the quality of life (QOL) and psychosocial situation of 52 home ventilated ALS patients and their caregivers. The battery included sociodemographic, generic, and disease-specific variables, as well as the Profile of Mood States and the Munich Quality of Life Dimensions List. Data were compared between the NIV (n=32) and the TV (n=21) groups. Mean ventilation time was 14 months for NIV and 35 months for TV. Eighty-one percent of TV patients had been tracheotomized without informed consent. The data show a good overall QOL for both NIV and TV patients, but a very high burden of care for TV caregivers, 30% of whom rated their own QOL lower than their patient's QOL. Sexuality was an important issue. Thus, any assessment of QOL in a home palliative care situation should include the primary caregivers.

  17. Attachment Style Predicts Affect, Cognitive Appraisals, and Social Functioning in Daily Life

    Directory of Open Access Journals (Sweden)

    Tamara eSheinbaum

    2015-03-01

    Full Text Available The way in which attachment styles are expressed in the moment as individuals navigate their real-life settings has remained an area largely untapped by attachment research. The present study examined how adult attachment styles are expressed in daily life using Experience Sampling Methodology (ESM in a sample of 206 Spanish young adults. Participants were administered the Attachment Style Interview and received personal digital assistants that signaled them randomly eight times per day for one week to complete questionnaires about their current experiences and social context. As hypothesized, participants’ momentary affective states, cognitive appraisals, and social functioning varied in meaningful ways as a function of their attachment style. Individuals with an anxious attachment, as compared with securely attached individuals, endorsed experiences that were congruent with hyperactivating tendencies, such as higher negative affect, stress, and perceived social rejection. By contrast, individuals with an avoidant attachment, relative to individuals with a secure attachment, endorsed experiences that were consistent with deactivating tendencies, such as decreased positive states and a decreased desire to be with others when alone. Furthermore, the expression of attachment styles in social contexts was shown to be dependent upon the subjective appraisal of the closeness of social contacts, and not merely upon the presence of social interactions. The findings support the ecological validity of the Attachment Style Interview and the person-by-situation character of attachment theory. Moreover, they highlight the utility of ESM for investigating how the predictions derived from attachment theory play out in the natural flow of real life.

  18. Life support decision making in critical care: Identifying and appraising the qualitative research evidence.

    Science.gov (United States)

    Giacomini, Mita; Cook, Deborah; DeJean, Deirdre

    2009-04-01

    The objective of this study is to identify and appraise qualitative research evidence on the experience of making life-support decisions in critical care. In six databases and supplementary sources, we sought original research published from January 1990 through June 2008 reporting qualitative empirical studies of the experience of life-support decision making in critical care settings. Fifty-three journal articles and monographs were included. Of these, 25 reported prospective studies and 28 reported retrospective studies. We abstracted methodologic characteristics relevant to the basic critical appraisal of qualitative research (prospective data collection, ethics approval, purposive sampling, iterative data collection and analysis, and any method to corroborate findings). Qualitative research traditions represented include grounded theory (n = 15, 28%), ethnography or naturalistic methods (n = 15, 28%), phenomenology (n = 9, 17%), and other or unspecified approaches (n = 14, 26%). All 53 documents describe the research setting; 97% indicate purposive sampling of participants. Studies vary in their capture of multidisciplinary clinician and family perspectives. Thirty-one (58%) report research ethics board review. Only 49% report iterative data collection and analysis, and eight documents (15%) describe an analytically driven stopping point for data collection. Thirty-two documents (60%) indicated a method for corroborating findings. Qualitative evidence often appears outside of clinical journals, with most research from the United States. Prospective, observation-based studies follow life-support decision making directly. These involve a variety of participants and yield important insights into interactions, communication, and dynamics. Retrospective, interview-based studies lack this direct engagement, but focus on the recollections of fewer types of participants (particularly patients and physicians), and typically address specific issues (communication and

  19. Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada’s Compassionate Care Benefit

    Directory of Open Access Journals (Sweden)

    Giesbrecht Melissa

    2012-11-01

    Full Text Available Abstract Introduction Family (i.e., unpaid caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB. Methods This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced

  20. Satisfaction with Life Scale (SWLS) in caregivers of clinically-referred youth: psychometric properties and mediation analysis.

    Science.gov (United States)

    Athay, M Michele

    2012-03-01

    This paper presents the psychometric evaluation of the Satisfaction with Life Scale (SWLS; Diener et al. in J Personal Assess 49:71-75, 1985) used with a large sample (N = 610) of caregivers for youth receiving mental health services. Methods from classical test theory, factor analysis, and item response theory were utilized. Additionally, this paper investigated whether caregiver strain mediates the effect of youth symptom severity on caregiver life satisfaction (N = 356). Bootstrapped confidence intervals were used to determine the significance of the mediated effects. Results indicated that the SWLS is a psychometrically sound instrument to be used with caregivers of clinically-referred youth. Mediation analyses found that the effect of youth symptom severity on caregiver life satisfaction was mediated by caregiver strain but that the mediation effect differed based on the type of youth symptoms: caregiver strain was a partial mediator when externalizing symptoms were measured and a full mediator when internalizing symptoms were measured. Implications for future research and clinical practice are discussed.

  1. South African Families Raising Children with Autism Spectrum Disorders: Relationship between Family Routines, Cognitive Appraisal and Family Quality of Life

    Science.gov (United States)

    Schlebusch, L.; Samuels, A. E.; Dada, S.

    2016-01-01

    Background: The purpose of this study was to investigate the relationship between family routines, cognitive appraisal of the impact of autism spectrum disorders (ASD) on the family and family quality of life (FQOL) in families raising children with ASD in South Africa. Methods: A sample of 180 families of young children with ASD who were…

  2. Uncovering an invisible network of direct caregivers at the end of life: a population study.

    Science.gov (United States)

    Burns, Catherine M; Abernethy, Amy P; Dal Grande, Eleanora; Currow, David C

    2013-07-01

    Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends. This population study aims to define the people who actually provide care at the end of life. A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and 'expected' death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence. People of all ages indicated they provided 'hands on' care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer. This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on 'next-of-kin' status in research will not identify them.

  3. Evaluation of the Quality of Life of Female Family Caregivers of Patients with Breast Cancer in Iran (2013

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    Masoumeh Hashemian

    2017-01-01

    Full Text Available Background & aim: Family caregivers of cancer patients are at a high risk of physical, psychological and emotional problems, which could adversely affect their quality of life. This study aimed to evaluate the quality of life of the female caregivers of breast cancer patients in Sabzevar, Iran. Methods: This cross-sectional study was conducted on 105 participants in Sabzevar, Iran in 2013. Subjects were selected via purposive sampling, and required data were collected using the Caregiver Quality of Life Index-Cancer (CQOLC scale, which was completed by the family caregivers of breast cancer patients through interviews. Data analysis was performed in SPSS version 20 using independent t-test, analysis of variance, Pearson’s correlation-coefficient, and stepwise multiple regression analysis. Results: Mean age of the participants was 36.9±10.9 years, and total mean score of quality of life was 55.48±10.87. The highest score was observed in the subscale of “lifestyle disruption” (mean: 66.14±17.31, while the lowest score belonged to the subscale of “emotional/mental burden” (mean: 49.43±18.49. Total mean score of quality of life in the sisters of breast cancer patients was 4.678 units higher compared to the caregivers who were the daughter of the patients. Moreover, total mean score of quality of life in breast cancer patients with no insurance was 5.457 scores lower compared to those with insurance. Conclusion: According to the results of this study, emotional and psychological needs of the female caregivers of patients with breast cancer (as informal caregivers must be considered in developing related educational programs for the formal caregivers of these patients, especially mental health nurses.

  4. Schizophrenia in Malaysian families: A study on factors associated with quality of life of primary family caregivers

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    Yi Eng J

    2011-06-01

    Full Text Available Abstract Background Schizophrenia is a chronic illness which brings detrimental effects in the caregivers' health. This study was aimed at highlighting the socio-demographic, clinical and psychosocial factors associated with the subjective Quality of Life (QOL of Malaysian of primary family caregivers of subjects with schizophrenia attending an urban tertiary care outpatient clinic in Malaysia. Methods A cross-sectional study was performed to study patient, caregiver and illness factors associated with the QOL among 117 individuals involved with caregiving for schizophrenia patients. The study used WHOQOL-BREF to assess caregivers' QOL and Brief Psychiatric Rating Scale (BPRS to assess the severity of patients' symptoms. Social Readjustment Rating Scale (SRRS assessed the stress level due to life events. Results The mean scores of WHOQOL-BREF in physical, psychological, social and environmental domains were 66.62 (14.36, 61.32 (15.52, 62.77 (17.33, 64.02 (14.86 consecutively. From multiple regression analysis, factors found to be significantly associated with higher QOL were higher educational level among caregivers in social and environmental domains; caregivers not having medical problem/s in physical and psychological domains; later onset and longer illness duration of illness in social domains; patients not attending day care program in environmental domain; lower BPRS score in physical and environmental domains. SRRS score of caregivers was also found to have a significant negative correlation with QOL in environmental and psychological domains. Other factors were not significantly associated with QOL. Conclusion Caregivers with more social advantages such as higher educational level and physically healthier and dealing with less severe illness had significantly higher QOL in various aspects. Supporting the caregivers in some of these modifiable factors in clinical practice is important to achieve their higher level QOL.

  5. Attitudes towards assisted suicide and life-prolonging measures in Swiss ALS patients and their caregivers

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    Ralf eStutzki

    2012-10-01

    Full Text Available Objectives: In Switzerland, assisted suicide (AS is legal, provided that the person seeking assistance has decisional capacity and the person assisting is not motivated by reasons of self-interest. However, in this particular setting nothing is known about patients’ and their caregivers’ attitudes towards AS and life-prolonging measures. Methods: Data was retrieved through validated questionnaires and personal interviews in 33 patients and their caregivers covering the following domains: physical function according to the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R, demographic data, quality of life (QoL, anxiety, depression, social situation, spirituality, burden of disease, life-prolonging and life-shortening acts.Results: In patients the median time after diagnosis was 9 months (2-90 and the median ALS FRS-R score was 37 (22-48. The majority of patients (94%; n=31 had no desire to hasten death. Patients’ and caregivers’ attitudes towards Percutaneous Endoscopic Gastrostomy (PEG and Non-Invasive Ventilation (NIV differed. Significantly more patients than caregivers (21.2% versus 3.1% stated that they were against NIV (p=0.049 and against PEG (27.3% versus 3.1%; p=0.031. Answers regarding tracheotomy were not significantly different (p= 0.139. Caregivers scored significantly higher levels of suffering (p=0.007, loneliness (p=0.006 and emotional distress answering the questionnaires (p<0.001. Suffering (p<0.026 and loneliness (p<0.016 were related to the score of the Hospital Anxiety and Depression Scale (HADS in patients. Conclusion: A liberal legal setting does not necessarily promote the wish for AS. However, the desire to discuss assisted suicide is prevalent in ALS patients. There is a higher level of suffering and loneliness on the caregivers’ side. A longitudinal study is warranted.

  6. Quality of life of caregivers of octogenarians: a study using the WHOQOL-BREF

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    Alexsandro Silva Coura

    2015-12-01

    Full Text Available Objective.To evaluate the quality of life of octogenarians and to identify the domains related to quality of life and health.Methodology. A cross-sectional, quantitative study conducted in 2010 in the Family Health Units of Campina Grande/PB, Brazil. The study sample consisted of 52 subjects that met the eligibility criteria of: 18 years or older, being a lay caregiver of octogenarians, and having no apparent cognitive problem. A questionnaire containing a sociodemographic section and the WHOQOL-BREF that is composed of two questions about the perceptions of quality of life and health, and 24 on the physical, psychological, social relationships and environmental domains. The Cronbach's-alpha test and the logical regression analysis of the data were conducted using SPSS. The project was approved by the Research Committee of the Center for Development and Higher Education (CAAE nº0490.0.133.000-08. Results. The Cronbach's alpha was 0.72, attesting to the reliability of the instrument used. The domain scores were: environmental (59.43, psychological (59.01, social relationships (46.77 and physical (43.86, whose values indicate dissatisfaction of subjects with regard to aspects related to quality of life. The environmental domain was correlated with quality of life (p=0.014 and the physical domain with perceptions of health (p=0.019; the daily safety and pain aspects had the highest correlations with quality of life (p=0.001. Conclusion. The perception of the caregivers regarding quality of life was not good. The environmental and physical domains had the highest correlations with quality of life and health.

  7. Satisfaction with Life of Schizophrenia Outpatients and Their Caregivers: Differences between Patients with and without Self-Reported Sleep Complaints

    Science.gov (United States)

    Afonso, Pedro; Cañas, Fernando; Bobes, Julio; Bernardo Fernandez, Ivan; Guzman, Carlos

    2013-01-01

    Patients with schizophrenia often present sleep complaints, but its relationship with general satisfaction with life (SWL) and burden for caregivers has been understudied. We aimed to assess the differences in SWL between patients with and without self-reported sleep disturbances and that of their caregivers. In a noninterventional study, 811 schizophrenia adult outpatients were screened for their subjective perception of having (or not) sleep disturbances and evaluated with the Brief Psychiatric Rating Scale (BPRS) and the Pittsburgh Sleep Quality Index (PSQI). Patients self-reporting sleep disturbances were significantly more symptomatic (P < 0.001), presented significantly worse family support (P = 0.0236), and self-reported worse SWL in all domains. Caregivers of patients with schizophrenia self-reporting sleep disturbances also reported worse SWL in all domains, as compared to caregivers of patients without subjective sleep disturbances. Patient and caregivers' SWL was significantly correlated to patients' quality of sleep (P < 0.0001 for all domains). Patient' and caregivers' SWL was negatively affected by patients' poor quality of sleep. We found that patients self-reporting sleep disturbances showed greater symptom severity, worse quality of sleep, worse SWL, and less caregiver support. SWL was also worse for caregivers of patients with schizophrenia reporting sleep disturbances. PMID:24288609

  8. Stress and Quality of Life in Urban Caregivers of Children With Poorly Controlled Asthma: A Longitudinal Analysis.

    Science.gov (United States)

    Bellin, Melissa H; Osteen, Philip; Kub, Joan; Bollinger, Mary E; Tsoukleris, Mona; Chaikind, Laurie; Butz, Arlene M

    2015-01-01

    The intent of this analysis was to examine the longitudinal effects of risk and protective factors on quality of life (QOL) in caregivers of minority children with asthma. Caregivers (n = 300) reported on demographics, child asthma characteristics, daily asthma caregiving stress, general life stress, social support, and QOL. Latent growth curve modeling examined changes in QOL across 12 months as a function of stress, asthma control, and social support. Caregivers were primarily the biological mother (92%), single (71%), unemployed (55%), and living in poverty. Children were African American (96%), Medicaid eligible (92%), and had poorly controlled asthma (93%). Lower QOL was associated with higher life stress, greater asthma caregiving stress, and lower asthma control over time. Findings underscore the importance of assessing objective and subjective measures of asthma burden and daily life stress in clinical encounters with urban, low-income caregivers of children with poorly controlled asthma. Copyright © 2015 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.

  9. Compassionate Love in Individuals With Alzheimer's Disease and Their Spousal Caregivers: Associations With Caregivers' Psychological Health.

    Science.gov (United States)

    Monin, Joan K; Schulz, Richard; Feeney, Brooke C

    2015-12-01

    To examine whether compassionate love in both individuals with Alzheimer's disease (AD) and their spousal caregivers related to less caregiving burden, more positive caregiving appraisals, and less depressive symptoms for caregivers. Fifty-eight individuals with AD and their spousal caregivers participated in interviews in which both partners reported their compassionate love for their partner, and caregivers self-reported burden, positive appraisals of caregiving, and depressive symptoms. As hypothesized, both AD individuals' and caregivers' compassionate love were associated with less burden and more positive appraisals of caregiving. Also, care givers' compassionate love mediated the association between AD individuals' compassionate love and caregivers' burden as well as the association between AD individuals' compassionate love and caregivers' positive appraisals of caregiving. Finally, there was a marginally significant association between caregivers' compassionate love and less caregiver depressive symptoms. Results suggest that AD individuals' compassionate love is related to compassionate love in caregivers, which in turn relates to reduced burden but not significantly less depressive symptoms for caregivers. Assessing caregivers' and AD individuals' feelings of compassionate love may be useful in identifying caregivers who are resilient and those who are at a heightened risk for caregiving burden. Also, interventions that enhance both partners' compassionate love may benefit caregivers. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  10. The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review.

    Science.gov (United States)

    Lynch, J; Cahalan, R

    2017-11-01

    Literature review. To provide a detailed review of the literature regarding the impact of spinal cord injury (SCI) on the quality of life (QOL) of family members who have become the primary caregiver and to highlight potential interventions available. Appropriate databases were searched for relevant peer-reviewed studies. Twenty-five studies (four qualitative and 21 quantitative) were identified which investigated the role that family members play in caring for people with SCI and the impact it has on their QOL. Depression, anxiety, physical symptoms and reduced satisfaction with life in primary family caregivers of patients with SCI were commonly reported across the literature. Isolation, loss of identity and role changes were also regularly reported as negative outcomes of caregiving for someone with an SCI. A range of interventions (including family training, problem-solving training and support groups) have been shown to have benefits for family caregivers' QOL. SCI impacts significantly on the QOL of family caregivers, with major implications for physical, mental and social aspects of caregiver health. This review highlights that these important issues are problematic internationally and may persist over several decades. The need for focused interventions to support family caregivers of spinal cord injured persons, with particular emphasis on increasing patient/family education and access to support groups, is recommended.

  11. Quality of life and coping strategies of caregivers of children with physical and mental disabilities

    Directory of Open Access Journals (Sweden)

    Deepak Ganjiwale

    2016-01-01

    Full Text Available Background: Developmental disability is a term that refers to permanent cognitive and or physical impairment. Arrested development of physical or mental capacities can lead to number of problems for the sufferer as well as the carers. Methodology: This study was conducted to assess the quality of life (QOL and coping mechanisms used by the carers of physically challenged children. In this cross-sectional study, all the 116 children from a school for children with special needs in Anand, Gujarat and their carers were included. World Health Organization-QOL (WHO-QOL and BREF COPE were administered to measure QOL and coping strategies, respectively. Results: On WHO-QOL, the social relationship domain was observed to be the best while environment domain had the lowest score. The main coping style used by the caregivers was Active emotional coping. Conclusions: Significant differences were found in QOL of the caregivers of physically challenged children based on the type of disability of the child. Rehabilitation programs can be planned to provide psychological support to the caregivers to ease the burden if any through collaborative efforts.

  12. Palliative and End-of-Life Care for Lesbian, Gay, Bisexual, and Transgender (LGBT) Cancer Patients and Their Caregivers.

    Science.gov (United States)

    Cloyes, Kristin G; Hull, William; Davis, Andra

    2018-02-01

    To identify the unique needs of lesbian, gay, bisexual, and transgender (LGBT) cancer patients and caregivers, and review recommendations supporting more effective and inclusive palliative and end-of-life care. Published research and clinical guidelines. Transitions in care raise particular challenges for LGBT patients, including provider communication, perceptions of safety and acceptance, and assessing and respecting patients' definitions of family and spirituality. LGBT patients and their caregivers need competent nurses to support them, especially during transitions. Implementing LGBT-inclusive education, training, and practice will improve outcomes for LGBT cancer patients and their caregivers - and potentially all patients. Copyright © 2017 Elsevier Inc. All rights reserved.

  13. Quality of life of caregivers for patients of cerebrovascular accidents: association of (socio-demographic characteristics and burden

    Directory of Open Access Journals (Sweden)

    Tatiana Ferreira da Costa

    2015-04-01

    Full Text Available OBJECTIVE Investigating the association between quality of life with socio-demographic characteristics and the burden of caregivers for individuals with cerebrovascular accident sequelae. METHOD A descriptive, cross-sectional study with a sample composed of 136 caregivers. For data collection, a semi-structured questionnaire, the Barthel, Burden Interview and Short-Form-36 scales were used. Correlation analysis, t-Student test and F-test were used for the analysis in order to compare averages. RESULTS Significant averages in quality of life were demonstrated in association with female caregivers and those over 60 years in the field 'functional capacity,' and in the domains of 'mental health' and 'vitality' for those with higher income. Regarding burden association, the highlighted areas were 'functional capacity,' 'physical aspects,' 'emotional aspects' and 'pain.' CONCLUSION The creation of public policies and social support to effectively reduce the burden on caregivers is a necessity.

  14. [Quality of life of caregivers for patients of cerebrovascular accidents: association of (socio-demographic) characteristics and burden].

    Science.gov (United States)

    Costa, Tatiana Ferreira da; Costa, Kátia Nêyla de Freitas Macêdo; Fernandes, Maria das Graças Melo; Martins, Kaisy Pereira; Brito, Silmery da Silva

    2015-04-01

    Investigating the association between quality of life with socio-demographic characteristics and the burden of caregivers for individuals with cerebrovascular accident sequelae. A descriptive, cross-sectional study with a sample composed of 136 caregivers. For data collection, a semi-structured questionnaire, the Barthel, Burden Interview and Short-Form-36 scales were used. Correlation analysis, t-Student test and F-test were used for the analysis in order to compare averages. Significant averages in quality of life were demonstrated in association with female caregivers and those over 60 years in the field 'functional capacity,' and in the domains of 'mental health' and 'vitality' for those with higher income. Regarding burden association, the highlighted areas were 'functional capacity,' 'physical aspects,' 'emotional aspects' and 'pain.' The creation of public policies and social support to effectively reduce the burden on caregivers is a necessity.

  15. The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia.

    Science.gov (United States)

    Peacock, Shelley; Duggleby, Wendy; Koop, Priscilla

    2014-04-01

    Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia. This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed. Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships. An understanding from bereaved caregivers' perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.

  16. Depression of Family Caregivers Is Associated with Disagreements on Life-Sustaining Preferences for Treating Patients with Dementia.

    Directory of Open Access Journals (Sweden)

    Chia-Fen Tsai

    Full Text Available Family caregivers may not agree with patients with dementia regarding attitudes toward end-of-life preferences, and the effects of this type of disagreement are not well understood. This study sought to identify such a disagreement and its predictors.A cross-sectional sample of 84 family caregivers and patients with dementia was recruited from memory clinics. We used the Mini-Mental State Examination, Neuropsychiatric Inventory, Clinical Dementia Rating, and Katz index of independence in activities of daily living to assess patient symptoms, functions, and severity of dementia. Caregivers completed questionnaires on perceived patient end-of-life care preferences, caregiver end-of-life care preferences for patients, Zarit Burden Interview (ZBI, Center for Epidemiological Studies-Depression Scale (CES-D, and knowledge of clinical complications of advanced dementia.The self-disclosure rates of patient preferences were 34.5% for tube feeding, 39.3% for cardiopulmonary resuscitation, and 45.2% for mechanical ventilation. For patients who had disclosed preferences, the disagreement rate between them and their caregivers was 48.3% for tube feeding, 48.5% for cardiopulmonary resuscitation, and 60.3% for mechanical ventilation. Caregiver depression (i.e., CES-D ≥16 was associated with disagreements on cardiopulmonary resuscitation (adjusted odds ratio (aOR = 6.6, 95% CI = 1.4-31.1, P = 0.01 and mechanical ventilation (aOR = 14, 95% CI = 2.2-87.2, P = 0.005 preferences.The preferences of end-of-life issues differed greatly between dementia patients and their caregivers. Depression in caregivers is associated with such discrepancy.

  17. Quality of life in stroke survivor-caregiver dyads: a new conceptual framework and longitudinal study protocol.

    Science.gov (United States)

    Savini, Serenella; Buck, Harleah G; Dickson, Victoria Vaughan; Simeone, Silvio; Pucciarelli, Gianluca; Fida, Roberta; Matarese, Maria; Alvaro, Rosaria; Vellone, Ercole

    2015-03-01

    To describe a new conceptual framework and the research protocol of a study designed to examine the quality of life in stroke survivor-caregiver dyads. Stroke has a significant impact on the patient-caregiver dyad. Few studies have been guided by a specific conceptual framework which considers the interactions among pre-existing situations prior to stroke, the new situation caused by the stroke and the moderating effects of environmental and caregiver-related variables. Longitudinal study. A sample of stroke survivor-caregiver dyads will be enrolled at patient discharge from rehabilitation hospitals and will be surveyed every 3 months for 1-year. Hypotheses generated from the conceptual framework will test predictors, mediators and moderators of stroke survivor and caregiver quality of life from the pre-existing situation prior to the stroke, the new situation mediation poststroke and situation moderators. The study is supported by a grant from the Centre of Excellence for Nursing Scholarship, Rome, December 2013. This study seeks to identify variables in the pre-existing situation prior to the stroke (e.g. living condition), the new situation mediation poststroke (e.g. type of stroke and caregiver burden) as well as situation moderators (e.g. social support) that influence stroke survivor-caregiver dyad's quality of life across the stroke trajectory. Also, the study will inform clinical practice and research by identifying variables that are potentially modifiable and therefore amenable to intervention. The proposed framework will also be helpful for future research focused on stroke survivor-caregiver dyads. © 2014 John Wiley & Sons Ltd.

  18. A multilevel analysis of factors affecting the difference in dental patients' and caregivers' evaluation of oral quality of life.

    Science.gov (United States)

    Sampogna, F; Johansson, V; Axtelius, B; Abeni, D; Söderfeldt, B

    2008-12-01

    In a previous study, we observed that the concordance between patients' and caregivers' evaluation of oral health-related quality of life (OHRQoL) was low. The aim of this study was to use multilevel analysis to investigate the possible determinants of the low concordance, taking into account different patients' demographic and clinical variables, the financial system used by patients to pay for dental treatment, and the role of the different caregivers and clinics. The OHRQoL of patients was assessed both by the patients and by their caregivers, using the Oral Health Impact Profile (OHIP)-14. Data were collected in four clinics, and patients were evaluated by one of 27 caregivers. We tested eight multilevel models, using the difference (caregivers OHIP - patients OHIP) as the dependent variable. Data were complete for 432 patients. The mean difference was 4.4 (standard deviation = 8.2; higher scores indicated a higher impact on OHRQoL). The variance due to patients was partly explained by their age, gender, and number of teeth, with a greater OHIP difference for older vs. younger patients, for women than for men, and in patients with fewer teeth. Almost 30% of the variance was due to caregivers, while the effect of clinics was not significant. It is important to study the possible causes of the different judgments concerning patients' OHRQoL by patients and caregivers, in order to improve the patients' satisfaction with care.

  19. Examining the relationship between health-related quality of life in individuals with spinal cord injury and the mental health of their caregivers in Colombia, South America.

    Science.gov (United States)

    Coleman, Jennifer A; Harper, Leia A; Perrin, Paul B; Olivera, Silvia L; Perdomo, Jose L; Arango, Jose A; Arango-Lasprilla, Juan C

    2013-12-01

    Although considerable research has been carried out on family caregivers of individuals with various types of disabilities, spinal cord injury (SCI) caregivers have received considerably less attention in terms of research, especially in regions such as Latin America. This study examined the relationship between health-related quality of life (HRQOL) in individuals with SCI and their family caregiver's mental health in Neiva, Colombia. Thirty-four individuals with SCI and their primary caregivers (34 dyads; n=68) from the Foundation for the Integral Development of People with Disabilities in Neiva, Colombia, were included in this study. Individuals with SCI completed eight subscales of the SF-36 that assessed HRQOL. Five aspects of caregiver mental health were assessed, including burden (Zarit Burden Interview), satisfaction with life (Satisfaction with Life Scale), depression (Patient Health Questionnaire-9), self-esteem (Rosenberg Self-Esteem Scale), and anxiety (State Trait Anxiety Inventory). A series of multiple regressions uncovered strong associations among the HRQOL of individuals with SCI and various aspects of caregiver mental health. In these regressions, patient physical functioning and pain were independently related to caregiver burden; patient pain and general health were independently related to caregiver satisfaction with life; and patient pain was independently related to caregiver anxiety. HRQOL in individuals with SCI was robustly related to their caregiver's mental health, suggesting that the two sets of variables are closely linked. These findings suggest that caregiver mental health should be a central part of SCI rehabilitation interventions, especially in Latin America.

  20. Three Mile Island accident: a case study of life event appraisal

    International Nuclear Information System (INIS)

    Goldsteen, R.L.

    1983-01-01

    This research investigates community reactions to the accident at the Three Mile Island (TMI) nuclear powered electric generating plant in March, 1979. The investigation is placed in the context of life event research and chooses an appraisal orientation. Three innovations are argued: 1) perceived consequences of the event best predict reactions to it, 2) the attitudes of significant others toward the event influence reactions to the accident under certain circumstances, and 3) sense of well-being is a good outcome measure for a general population. The hypotheses posit that the attitudes of others will affect sense of well-being only when individual attitudes concerning the consequences of the accident are moderate; when individual attitudes are extreme, the attitudes of others will have no demonstrable effect on outcomes. The findings did not support all the prediction of the hypotheses. However, they indicate that perceived consequences are the best predictors of sense of well-being and that an individual's attitudinal position, his strength of attitude, and the nature of the stimulus are highly related to whether or not an individual will be influenced by the views of others

  1. Perception of parents and caregivers regarding the impact of malocclusion on adolescents' quality of life: a cross-sectional study.

    Science.gov (United States)

    Abreu, Lucas Guimarães; Melgaço, Camilo Aquino; Abreu, Mauro Henrique; Lages, Elizabeth Maria Bastos; Paiva, Saul Martins

    2016-01-01

    The objective of this article was to assess the perception of parents and caregivers regarding the impact of malocclusion on adolescents' oral health -related quality of life (OHRQoL). This cross-sectional study consisted of a sample of 280 parents/caregivers of 11 and 12-year-old adolescents who answered the Parental-Caregiver Perceptions Questionnaire (P-CPQ). Parent-assessed quality of life of adolescents was the dependent variable. The main independent variable was adolescents' malocclusion which was diagnosed by means of the Dental Aesthetic Index (DAI). Based on DAI cut-off points, adolescents were classified into four grades of malocclusion, with different orthodontic treatment recommendations assigned to each grade: no need/slight treatment need, elective treatment, highly desirable treatment and mandatory treatment. Adolescents' age and sex, as well as family monthly income, were considered as confounding variables. Statistical analysis involved descriptive statistics, bivariate analyses, and Poisson regression with robust variance. Of the 280 parents/caregivers initially accepted in this study, 18 refused to answer the P-CPQ. Therefore, 262 individuals participated in this assessment, providing a response rate of 93.5%. The severity of adolescents' malocclusion was significantly associated with a higher negative impact on parents'/caregivers' perception on the oral symptoms (pcontrolling variables. Parents/caregivers reported a negative impact of malocclusion on adolescents' OHRQoL. Increased severity of malocclusion is associated with higher adverse impact on OHRQoL.

  2. Factors associated with health-related quality of life among Chinese caregivers of the older adults living in the community: a cross-sectional study

    Directory of Open Access Journals (Sweden)

    Yang Xiaoshi

    2012-11-01

    Full Text Available Abstract Background Under the culture of filial piety and due to the Confucianism spirit in China, family caregivers usually undertake the responsibilities of caring for the older adults. They usually suffer from a heavy burden which is believed to impair their mental and physical health. Thus this study aims to describe the health-related quality of life (HRQOL among Chinese caregivers of the older adults living in the community and explore the predictors of caregivers’ HRQOL. Methods A cross-sectional study was conducted through convenience sampling. The study population was composed of 1,144 caregivers of older adults who suffered from one or more types of chronic diseases in 15 communities in 3 eastern cities of China. Family caregivers were interviewed face-to-face using the 36-item Short-Form Health Survey (SF-36 and the ZARIT Caregiver Burden interview (ZBI scales. The Antonovsky's Sense of coherence (SOC scale was also used to measure personal coping capability of the caregivers. Hierarchical multiple regression analysis (HMR was performed to explore the predictors of caregivers’ HRQOL. Results The majority of the caregivers were females (60.0% or adult children (66.5%. Mental QOL was significantly lower than physical QOL. Hierarchical multiple regression analysis showed that Demographic Characteristics of Caregivers, Patients’ Characteristics, and Subjective Caregiver Burden explained most of the total variance of all aspects of HRQOL. While, Objective Caregiving Tasks was only associated with physical QOL. Subjective Caregiver Burden was the strongest predictor of both physical and mental QOL. SOC was also a strong predictor of physical and mental QOL. Conclusions The mental QOL of the caregivers of older adults was disrupted more seriously than physical QOL. Additionally, Subjective Caregiver Burden might decrease caregiver’ health. A decrease in caregiver burden could promote better management of caregiving tasks, and improve

  3. Factors associated with the quality of life of subjects with Parkinson's disease and burden on their caregivers.

    Science.gov (United States)

    Rodríguez-Violante, M; Camacho-Ordoñez, A; Cervantes-Arriaga, A; González-Latapí, P; Velázquez-Osuna, S

    2015-06-01

    Parkinson's disease affects the quality of life of the individual with the disease in addition to creating a burden on the caregiver. Factors related to these effects include motor and non-motor aspects of the disease, as well as traits inherent to the caregiver. We evaluated subjects with Parkinson's disease using the following instruments: Quality of Life Questionnaire PDQ-8, Movement Disorders Society Unified Parkinson's disease Rating Scale part i to iv (MDS-UPDRS), and Hoehn and Yahr staging. The Zarit Burden Inventory was used to assess all primary caregivers. Major demographic and clinical variables were also recorded. A total of 250 subjects with Parkinson's disease were included, of whom 201 had a primary caregiver. In the multivariate analysis, predictors of poor quality of life for a subject with Parkinson's disease were the MDS-UPDRS I score (β=.39, PParkinson's disease and the caregiver's perceived burden. However, the factors that determine each situation appear to be distinct. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier España, S.L.U. All rights reserved.

  4. Perceived stress and quality of life in dementia patients and their caregiving spouses: does dyadic coping matter?

    Science.gov (United States)

    Häusler, Andreas; Sánchez, Alba; Gellert, Paul; Deeken, Friederike; Rapp, Michael A; Nordheim, Johanna

    2016-11-01

    Given the well-established association between perceived stress and quality of life (QoL) in dementia patients and their partners, our goal was to identify whether relationship quality and dyadic coping would operate as mediators between perceived stress and QoL. 82 dyads of dementia patients and their spousal caregivers were included in a cross-sectional assessment from a prospective study. QoL was assessed with the Quality of Life in Alzheimer's Disease scale (QoL-AD) for dementia patients and the WHO Quality of Life-BREF for spousal caregivers. Perceived stress was measured with the Perceived Stress Scale (PSS-14). Both partners were assessed with the Dyadic Coping Inventory (DCI). Analyses of correlation as well as regression models including mediator analyses were performed. We found negative correlations between stress and QoL in both partners (QoL-AD: r = -0.62; p stress and QoL in spousal caregivers (z = 0.28; p = 0.02), but not in dementia patients. Likewise, relationship quality significantly mediated the relationship between stress and QoL in caregivers only (z = -2.41; p = 0.02). This study identified dyadic coping as a mediator on the relationship between stress and QoL in (caregiving) partners of dementia patients. In patients, however, we found a direct negative effect of stress on QoL. The findings suggest the importance of stress reducing and dyadic interventions for dementia patients and their partners, respectively.

  5. The CareGiver Oncology Quality of Life questionnaire (CarGOQoL): development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer.

    Science.gov (United States)

    Minaya, Patricia; Baumstarck, Karine; Berbis, Julie; Goncalves, Anthony; Barlesi, Fabrice; Michel, Gérard; Salas, Sébastien; Chinot, Olivier; Grob, Jean-Jacques; Seitz, Jean François; Bladou, Franck; Clement, Audrey; Mancini, Julien; Simeoni, Marie-Claude; Auquier, Pascal

    2012-04-01

    The study objective was to validate a specific quality of life (QoL) questionnaire for caregivers of cancer patients, the CareGiver Oncology Quality of Life questionnaire (CarGOQoL), based on the exclusive points of view of the caregivers. A 75-item questionnaire generated from content analysis of interviews with caregivers was self-completed by 837 caregivers of cancer patients. In addition to sociodemographic data and patient characteristics, self-reported questionnaires assessing QoL, burden, coping and social support were collected. Psychometric properties combined methods relying on both classical test theory and item response theory. The final 29 items selected assessed 10 dimensions: psychological well-being, burden, relationship with health care, administration and finances, coping, physical well-being, self-esteem, leisure time, social support and private life; they were isolated from principal component analysis explaining 73% of the total variance. The missing data and the floor effects were low. Some ceiling effects were found for B (34%). Cronbach's alpha coefficients ranged from 0.72 to 0.89, except private life (PL) (0.55). Unidimensionality of the scales was confirmed by Rasch analyses. Correlations with other instruments confirmed the isolated content and significant links were found with respect to patient's characteristics. Reproducibility and sensitivity to change were found satisfactory. The CarGOQoL could provide a reliable and valid measure of caregivers of cancer patients' QoL which are key-actors in the provision of health care. Copyright © 2011 Elsevier Ltd. All rights reserved.

  6. Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review.

    Science.gov (United States)

    Rainsford, Suzanne; MacLeod, Roderick D; Glasgow, Nicholas J; Phillips, Christine B; Wiles, Robert B; Wilson, Donna M

    2017-12-01

    End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care. To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences. A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors. A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and 'country'. Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

  7. Satisfaction with Life of Schizophrenia Outpatients and Their Caregivers: Differences between Patients with and without Self-Reported Sleep Complaints

    Directory of Open Access Journals (Sweden)

    Sofia Brissos

    2013-01-01

    Full Text Available Patients with schizophrenia often present sleep complaints, but its relationship with general satisfaction with life (SWL and burden for caregivers has been understudied. We aimed to assess the differences in SWL between patients with and without self-reported sleep disturbances and that of their caregivers. In a noninterventional study, 811 schizophrenia adult outpatients were screened for their subjective perception of having (or not sleep disturbances and evaluated with the Brief Psychiatric Rating Scale (BPRS and the Pittsburgh Sleep Quality Index (PSQI. Patients self-reporting sleep disturbances were significantly more symptomatic (P<0.001, presented significantly worse family support (P=0.0236, and self-reported worse SWL in all domains. Caregivers of patients with schizophrenia self-reporting sleep disturbances also reported worse SWL in all domains, as compared to caregivers of patients without subjective sleep disturbances. Patient and caregivers’ SWL was significantly correlated to patients’ quality of sleep (P<0.0001 for all domains. Patient’ and caregivers’ SWL was negatively affected by patients’ poor quality of sleep. We found that patients self-reporting sleep disturbances showed greater symptom severity, worse quality of sleep, worse SWL, and less caregiver support. SWL was also worse for caregivers of patients with schizophrenia reporting sleep disturbances.

  8. Matched and Mismatched Appraisals of the Effectiveness of Communication Strategies by Family Caregivers of Persons with Alzheimer's Disease

    Science.gov (United States)

    Savundranayagam, Marie Y.; Orange, J. B.

    2014-01-01

    Background: Communication problems stemming from Alzheimer's disease (AD) often result in misunderstandings that can be linked with problem behaviours and increased caregiver stress. Moreover, these communication breakdowns also can result either from caregivers' use of ineffective communication strategies, which paradoxically are…

  9. Life stress and symptoms of anxiety and depression in women after cancer: The mediating effect of stress appraisal and coping.

    Science.gov (United States)

    Seib, Charrlotte; Porter-Steele, Janine; Ng, Shu-Kay; Turner, Jane; McGuire, Amanda; McDonald, Nicole; Balaam, Sarah; Yates, Patsy; McCarthy, Alexandra; Anderson, Debra

    2018-04-06

    This paper examines the direct and intermediary relationships between life stress, stress appraisal, and resilience, and increased anxiety and depressive symptoms in Australian women after cancer treatment. Data examined from 278 women aged 18 years and older previously treated for breast, gynaecological, or blood cancer, participating in the Australian Women's Wellness after Cancer Program. Serial mediation models interrogated the effect of stressful life events (List of Threatening Experiences-Modified) mediated by appraisal and coping (Perceived Stress Scale and Connor-Davidson Resilience Scale), on symptoms of anxiety and depression (Zung Self-rating Anxiety Scale and Center for Epidemiologic Studies Depression Scale). Over one-quarter (30.2%) of participants reported 1 or more stressful life events, other than their cancer, in the previous 6 months. Results indicate that perceived stress fully mediated the relationships between life stress, anxiety (indirect effect = 0.09, Bias-corrected bootstrap 95% CI 0.02-0.18, Percent mediation = 0.51), and depressive symptoms (indirect effect = 0.11, Bias-corrected bootstrap 95% CI 0.02-0.23, Percent mediation = 0.71) and accounted for more than half of the relationship between predictor and outcome. Findings indicate that stress appraisal mediated the relationship between past life stressors and anxiety and depressive symptoms. This analysis also highlights the need to consider wellness within a broader care context to identify potentially vulnerable patients to possibly avert future health concerns. Copyright © 2018 John Wiley & Sons, Ltd.

  10. Health related quality of life impact from rotavirus diarrhea on children and their family caregivers in Thailand

    NARCIS (Netherlands)

    Rochanathimoke, Onwipa; Riewpaiboon, Arthorn; Postma, Maarten J; Thinyounyong, Wirawan; Thavorncharoensap, Montarat

    2018-01-01

    BACKGROUND: Rotavirus diarrhea is a major health problem among young children worldwide with potential negative impacts on health-related quality of life (HRQoL). This study assessed the impact of rotavirus diarrhea on HRQoL of children and their caregivers. METHODS: We performed a cross-sectional

  11. Perspectives on quality of life of people with intellectual disabilities: the interpretation of discrepancies between clients and caregivers

    NARCIS (Netherlands)

    Janssen, C.G.C.; Schuengel, C.; Stolk, J.

    2005-01-01

    Large discrepancies have sometimes been found between the quality of life (QOL) experienced by clients with intellectual disabilities and their QOL as described by their caregivers. Olsen and Schober (Soc Indi Res 1993; 28: 173-193) may have provided a framework useful to conceptualize such

  12. Factors influencing changes in health related quality of life of caregivers of persons with multiple chronic conditions.

    Science.gov (United States)

    Duggleby, Wendy; Williams, Allison; Ghosh, Sunita; Moquin, Heather; Ploeg, Jenny; Markle-Reid, Maureen; Peacock, Shelley

    2016-05-27

    The majority of care for older adults with multiple chronic conditions (MCC) is provided by family (including friends) caregivers. Although caregivers have reported positive benefits to caregiving they also experience decreases in their physical and mental health. As there is a critical need for supportive interventions for this population, it is important to know what influences the health of family caregivers of persons with MCC. This research examined relationships among the changes from baseline to 6 months in health related quality of life (SF12v2) of family caregivers caring for older adults with multiple chronic conditions and the following factors: a) demographic variables, b) gender identity [Bem Sex Role Inventory (BSRI)] c) changes in general self-efficacy [General Self Efficacy Scale (GSES) (baseline to 6 months) and d)) changes in caregiver burden [Zarit Burden Inventory (ZBI)] baseline to 6 months. Specific hypothesis were based on a conceptual framework generated from a literature review. This is a secondary analysis of a study of 194 family caregivers who were recruited from two Canadian provinces Alberta and Ontario. Data were collected in-person, by telephone, by Skype or by mail at two time periods spaced 6 months apart. The sample size for this secondary analysis was n = 185, as 9 participants had dropped out of the study at 6 months. Changes in the scores between the two time periods were calculated for SF12v2 physical component score (PCS) and mental component score (MCS) and the other main variables. Generalized Linear Modeling was then used to determine factors associated with changes in HRQL. Participants who had significantly positive increases in their MCS (baseline to 6 months) reported lower burden (ZBI, p gender identity (which incorporates assertive and instrumental approaches to caregiving), and confidence in the ability to deal with difficult situations was positively related to improvement in mental health for caregivers of

  13. Quality of life of children and their caregivers during an AOM episode: development and use of a telephone questionnaire

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    Dubé Eve

    2010-07-01

    Full Text Available Abstract Background The negative consequences of acute otitis media (AOM on the quality of life (QOL of children and their families need to be measured to assess benefits of preventive interventions. Methods A new questionnaire was specifically designed for use in telephone surveys. A random sample of Canadian families was selected using random-digit dialling. Caregivers of children 6-59 months of age who experienced at least one AOM episode during the last 12 months were interviewed. Multidimensional severity and global QOL scores were measured both for affected children and their caregivers. Internal consistency of scores was assessed using standard tests. Results Of the 502 eligible caregivers who completed the survey, 161 (32% reported at least one AOM episode during the last 12 months and these cases were included in the analysis. Average severity was 2.6 for children and 2.4 for caregivers on a 1 to 4 scale (maximum severity. Cronbach alpha values were 0.78 and 0.81 for the severity score of children and caregivers respectively. Average QOL was 3.4 for children and 3.5 for caregivers on a 1 to 5 scale (best QOL. There was moderate to high correlation between severity and QOL scores, and between these scores and duration of AOM episodes. Conclusions The questionnaire was easy to use during telephone interviews and results suggest good reliability and validity of the different scores to measure AOM severity and QOL of children and their caregivers during an AOM episode.

  14. Views on the Effects of the Spanish Dependency Law on Caregivers' Quality of Life Using Concept Mapping.

    Science.gov (United States)

    Salvador-Piedrafita, María; Malmusi, Davide; Mehdipanah, Roshanak; Rodríguez-Sanz, Maica; Espelt, Albert; Pérez, Cristina; Solf, Elisabeth; Abajo Del Rincón, María; Borrell, Carme

    2017-04-01

    In 2006 the Spanish Dependency Law established new rights for people in situation of dependency. The impact of the Law could have also affected the quality of life of their carers. This study aims to understand how the Law may have influenced caregivers' quality of life through their own perceptions and those of Primary Health Care professionals, and to compare both perspectives. The study used Concept Mapping, a mixed methods technique. In total, 16 caregivers and 21 professionals participated. Both groups identified a mix of positive and negative effects. Uncertainties and delays in granting benefits were reported. However, several advantages were identified, such as the possibility of sharing the burden of care, thus reducing its physical, mental and social consequences, while at the same time being able to maintain responsibility. Most of the mechanisms identified were common to both caregivers and professionals; the most notable differences were that the latter attached more importance to economic support and less to the negative effects of implementation of the Law. This study reveals positive effects of the Law on caregivers' quality of life and the potential for improvement of some negative aspects in its implementation related with the context of austerity.

  15. Illness appraisals and health-related quality of life in adolescents and young adults with allergies and asthma.

    Science.gov (United States)

    Hullmann, Stephanie E; Eddington, Angelica R; Molzon, Elizabeth S; Mullins, Larry L

    2013-01-01

    The current study sought to: 1) assess differences in levels of physical and mental health-related quality of life (HRQOL), illness uncertainty, and intrusiveness in adolescents and young adults (AYAs) with allergies and asthma, as well as 2) examine the effect of illness appraisals on HRQOL. Participants were undergraduate students with self-reported allergies (n=74) and asthma (n=74) who completed the Mishel Uncertainty in Illness Scale (MUIS), the Illness Intrusiveness Scale (IIS), and the SF-36 Health Survey Questionnaire. Paired t-tests indicated that AYAs with allergies reported higher levels of illness uncertainty and poorer mental HRQOL than AYAs with asthma; the groups did not differ on reported levels of illness intrusiveness or physical HRQOL. Hierarchical regressions were conducted to examine the relationship between illness appraisals and HRQOL. Results revealed that poorer mental HRQOL was associated with higher illness uncertainty in AYAs with allergies and higher illness intrusiveness in AYAs with asthma. Poorer physical HRQOL was associated with higher illness uncertainty in AYAs with asthma and higher illness intrusiveness in AYAs with allergies and asthma. The current examination suggests that illness appraisals may be differentially related to HRQOL in AYAs with allergies compared to those with asthma.

  16. Appraisal of and Coping with a Real-Life Stressful Situation: The Contribution of Attachment Styles.

    Science.gov (United States)

    Mikulincer, Mario; Florian, Victor

    1995-01-01

    Assessed ways attachment styles affect young adults' reactions to stressors associated with four-month combat training. Results show that, compared with secure trainees, ambivalent trainees reported more emotion-focused coping, appraised the training in more threatening terms, and considered themselves less capable of coping with the training.…

  17. Factors Influencing Quality of Life in Caregivers of People with Parkinson's Disease and Implications for Clinical Guidelines

    Directory of Open Access Journals (Sweden)

    D. Morley

    2012-01-01

    Full Text Available The quality of life (QoL of informal caregivers can be adversely affected by a number of factors. This issue, however, has not been well explored for carers of people with Parkinson's (PwP, with research largely restricted to the assessment of caregiver burden and caregiver strain. This study aims to determine the main influences on carer QoL in this population and consider results in the context of current clinical guidelines for the management of Parkinson's disease (PD. Carers completed the newly validated PDQ-Carer, and PwP completed the PDQ-39. The sample comprised 238 carers (mean age 68.20 years and 238 PwP (mean age 71.64. Results suggest multiple influences on caregiver QoL. These include carer age, gender, health status, and duration of the caregiving role. PwP levels of mobility and cognitive impairment are also significant influences on carer QoL. Not only should practitioners and service providers be particularly aware of the heightened impact of PD on carers over time and as PwP symptoms deteriorate, but this should also be reflected in clinical guidelines for the management of PD.

  18. Psychological status and quality of life among primary caregivers of individuals with mental illness: a hospital based study.

    Science.gov (United States)

    Jeyagurunathan, Anitha; Sagayadevan, Vathsala; Abdin, Edimansyah; Zhang, YunJue; Chang, Sherilyn; Shafie, Saleha; Rahman, Restria Fauziana Abdul; Vaingankar, Janhavi Ajit; Chong, Siow Ann; Subramaniam, Mythily

    2017-05-19

    This study aimed to explore the psychological status and quality of life among primary caregivers of individuals suffering from various mental illnesses including early psychosis, chronic schizophrenia, depressive disorders, anxiety disorders and dementia. A total of 350 primary caregivers with relatives seeking treatment at a tertiary psychiatric hospital were recruited for this study. Socio-demographic data was obtained and the brief version of the World Health Organisation Quality of Life instrument was used to assess caregiver's quality of life (QOL). Psychological status among primary caregivers was assessed using the General Anxiety Disorder - 7 item (GAD-7) and Patient Health Questionnaire - 9 item (PHQ-9) scales. Family Interview Schedule (FIS) was used to assess the impact of caregiving relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative's illness. The socio-demographic and clinical correlates of QOL, PHQ-9 and GAD-7 were examined using multiple linear and logistic regression analyses. Associations between QOL domains and psychological status was examined using multiple linear regression analyses. The mean age of the primary caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50-64 years old (45.7%). Majority were of Chinese ethnicity (57.5%), had secondary level education (43.1%), were married (65.2%), and employed (64.9%). 18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off point of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Multiple linear and logistic regression analyses revealed that primary caregivers aged between 35-49 years and 50-64 years, unemployed, living with others, providing care to those diagnosed with dementia and who had higher FIS scores were significantly more likely to report symptoms

  19. Consumer visual appraisal and shelf life of leg chops from suckling kids raised with natural milk or milk replacer.

    Science.gov (United States)

    Ripoll, Guillermo; Alcalde, María J; Argüello, Anastasio; Córdoba, María G; Panea, Begoña

    2018-05-01

    The use of milk replacers to feed suckling kids could affect the shelf life and appearance of the meat. Leg chops were evaluated by consumers and the instrumental color was measured. A machine learning algorithm was used to relate them. The aim of this experiment was to study the shelf life of the meat of kids reared with dam's milk or milk replacers and to ascertain which illuminant and instrumental color variables are used by consumers as criteria to evaluate that visual appraisal. Meat from kids reared with milk replacers was more valuable and had a longer shelf life than meat from kids reared with natural milk. Consumers used the color of the whole surface of the leg chop to assess the appearance of meat. Lightness and hue angle were the prime cues used to evaluate the appearance of meat. Illuminant D65 was more useful for relating the visual appraisal with the instrumental color using a machine learning algorithm. The machine learning algorithms showed that the underlying rules used by consumers to evaluate the appearance of suckling kid meat are not at all linear and can be computationally schematized into a simple algorithm. © 2017 Society of Chemical Industry. © 2017 Society of Chemical Industry.

  20. Quality of life in amyotrophic lateral sclerosis patients and caregivers: Impact of assistive communication from early stages.

    Science.gov (United States)

    Londral, Ana; Pinto, Anabela; Pinto, Susana; Azevedo, Luis; De Carvalho, Mamede

    2015-12-01

    In this study we performed a longitudinal investigation to assess the impact of early introduction of assistive communication devices (ACDs) on quality of life (QoL) in amyotrophic lateral sclerosis (ALS) patients and their caregivers. Patients were followed for 7-10 months (3 evaluation periods). Bulbar-onset ALS patients (N = 27) and paired caregivers (N = 17) were included. Fifteen randomly selected patients received early support in ACD use. Patients were assessed using the ALS Functional Rating Scale-revised (ALSFRS-R), the McGill QoL (MQoL), the Communication Effectiveness Index (CETI), and performance in writing; and caregivers were assessed with the MQoL and World Health Organization Quality of Life questionnaire (WHOQOL-BREF). Patients with early support had higher MQoL Psychological and MQoL Existential well-being domains; caregivers had higher MQoL Support domain and their MQoL Psychological domain positively associated with patient CETI. Most patients could communicate using a touchscreen keyboard to write, even when handwriting and speech were not possible. Early intervention with an ACD seems to have a positive impact on QoL and gives patients the opportunity to improve skills for communication in later disease stages. © 2015 Wiley Periodicals, Inc.

  1. Spousal Perceptions of Marital Stress and Support among Grandparent Caregivers: Variations by Life Stage

    Science.gov (United States)

    Matzek, Amanda E.; Cooney, Teresa M.

    2009-01-01

    Few studies have examined how raising grandchildren influences the marital relationship of grandparent caregivers although half of such caregivers are married. This study used national survey data from Midlife Development in the United States (MIDUS) to contrast perceptions of spousal support and strain for grandparents who had recently provided…

  2. Social support as a mediator variable of the relationship between depression and life satisfaction in a sample of Saudi caregivers of patients with Alzheimer's disease.

    Science.gov (United States)

    Khusaifan, Shatha Jamil; El Keshky, Mogeda El Sayed

    2017-02-01

    Caring for someone with Alzheimer's disease (AD) is very challenging. Social support may play a crucial role in helping caregivers to adapt better to their caregiving role. The aim of this study is to explore the role of social support as a moderator variable of the relationship between depression and life satisfaction in caregivers for patients with AD in Saudi Arabia. In this cross-sectional study, 122 caregivers for patients with AD completed questionnaires assessing informal social support, depressive symptoms, and general life satisfaction. The demographic characteristics showed that 79% (n = 96) of caregivers were females and between the ages of 20 and 50. Higher levels of social support positively correlated with reported higher levels of life satisfaction (r = 0.483, p Depression was negatively correlated with social support (r = -0.418, p Social support was found to be a partial mediator variable, mediating approximately 23.05% of the total effect of depression on life satisfaction (Sobel = -3.065, p = 0.002). Informal social support can act as a mediator variable in the relationship of depression and life satisfaction in caregivers of AD patients. Improving the informal social support networks may help in coping with caregiving burden and better quality of life.

  3. Nursing home care: exploring the role of religiousness in the mental health, quality of life and stress of formal caregivers.

    Science.gov (United States)

    Lucchetti, G; Lucchetti, A L G; Oliveira, G R; Crispim, D; Pires, S L; Gorzoni, M L; Panicio, C R G; Koenig, H G

    2014-06-01

    Despite the high number of studies on family caregivers, there is little research on the impact of religiosity on formal caregiving (paid providers). We examine the role of religiousness in the mental health, quality of life and stress of nurse aides (NA) who provide care for patients in a nursing home. NA in a Brazilian nursing home were invited to participate. Because of its coping function, we hypothesized that religiousness was related to better mental health and quality of life. Linear regression was used to test this hypothesis and control for confounders. Compared with the Brazilian general population, NA scored higher on measures of religious involvement. Intrinsic religiosity was associated with better mental health and quality of life. Organizational religiosity was associated with better social functioning, better general mental health and fewer anxiety symptoms. Non-organizational religiosity (prayer), however, was associated with negative outcomes, such as higher stress, poorer general health perceptions and more anxiety symptoms. Most NA indicated that they had prayed for and with their patients. In conclusion, paid caregivers (NA) have a strong sense of religiousness, which plays an important role in many ways, including the type of care they provide, their mental health and their quality of life. © 2013 John Wiley & Sons Ltd.

  4. Quality of life in asthmatic children and their caregivers after two-year treatment with omalizumab, a real-life study

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    Anna Sztafińska

    2017-10-01

    Full Text Available Introduction : Omalizumab, a monoclonal anti-immunoglobulin E antibody, has been successfully used as a supplementary therapy to improve asthma control in children aged ≥ 6 years with severe persistent allergic asthma. Aim : To demonstrate the quality of life in children with severe asthma and their caregivers, and changes from baseline in forced expiratory volume in 1 s (FEV 1 and daily inhaled corticosteroids (ICS dose after 2-year treatment with omalizumab. Material and methods : Participants were seen in the clinic at enrollment (visit 1, after 16 weeks (visit 2, after 52 weeks (visit 3 and after 104 weeks (visit 4 of treatment with omalizumab. We evaluated lung function, ICS use and the quality of life with the Pediatric Asthma Quality of Life Questionnaire (PAQLQ and the Pediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ. Results : Nineteen children and caregivers were enrolled. Significant improvement was observed in PAQLQ and PACQLQ scores, both in all domains and in total scores. Significant differences were found between the first and the other visits. A positive correlation between PAQLQ and PACQLQ at the first and at the second visit was found, 63.3% of patients achieved reduction in ICS doses. We did not notice any significant improvement in FEV 1 . Conclusions : The improvement in quality of life in asthmatic children and adolescents observed after omalizumab correlates with the improvement of quality of life in caregivers, reduction in ICS use but not with FEV 1 .

  5. The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death.

    Science.gov (United States)

    Aoun, Samar M; Ewing, Gail; Grande, Gunn; Toye, Chris; Bear, Natasha

    2018-02-01

    The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  6. Exploring the associations between spiritual well-being, burden, and quality of life in family caregivers of cancer patients.

    Science.gov (United States)

    Spatuzzi, Roberta; Giulietti, Maria Velia; Ricciuti, Marcello; Merico, Fabiana; Fabbietti, Paolo; Raucci, Letizia; Bilancia, Domenico; Cormio, Claudia; Vespa, Anna

    2018-05-11

    The spiritual dimension is important in the process of coping with stress and may be of special relevance for those caring for cancer patients in the various phases of caregivership, although current attention is most prevalent at the end of life. This study explores the associations among spiritual well-being (SWB), caregiver burden, and quality of life (QoL) in family caregivers of patients with cancer during the course of the disease. This is a cross-sectional study. All participants (n = 199) underwent the following self-report questionnaires: the SWB-Index, the Medical Outcomes Study Short Form, and the Caregiver Burden Inventory (CBI). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. Statistical analyses were made using the Student t or by chi-square test to compare high and low SWB groups.ResultThe high SWB group reported significantly better Medical Outcomes Study Short Form scores in bodily pain (p = 0.035), vitality (p scale. The high SWB group also had better CBI scores in the physical (p = 0.049) and developmental burden (p = 0.053) subscales. There were no significant differences in the other CBI scores (overall and sections).Significance of resultsThis study points out that high SWB caregivers have a more positive QoL and burden. Knowledge of these associations calls for more attention on the part of healthcare professionals toward spiritual resources among family cancer caregivers from the moment of diagnosis and across the entire cancer trajectory.

  7. Perception of parents and caregivers regarding the impact of malocclusion on adolescents’ quality of life: a cross-sectional study

    Directory of Open Access Journals (Sweden)

    Lucas Guimarães Abreu

    Full Text Available ABSTRACT Objective: The objective of this article was to assess the perception of parents and caregivers regarding the impact of malocclusion on adolescents’ oral health -related quality of life (OHRQoL. Methods: This cross-sectional study consisted of a sample of 280 parents/caregivers of 11 and 12-year-old adolescents who answered the Parental-Caregiver Perceptions Questionnaire (P-CPQ. Parent-assessed quality of life of adolescents was the dependent variable. The main independent variable was adolescents’ malocclusion which was diagnosed by means of the Dental Aesthetic Index (DAI. Based on DAI cut-off points, adolescents were classified into four grades of malocclusion, with different orthodontic treatment recommendations assigned to each grade: no need/slight treatment need, elective treatment, highly desirable treatment and mandatory treatment. Adolescents’ age and sex, as well as family monthly income, were considered as confounding variables. Statistical analysis involved descriptive statistics, bivariate analyses, and Poisson regression with robust variance. Results: Of the 280 parents/caregivers initially accepted in this study, 18 refused to answer the P-CPQ. Therefore, 262 individuals participated in this assessment, providing a response rate of 93.5%. The severity of adolescents’ malocclusion was significantly associated with a higher negative impact on parents’/caregivers’ perception on the oral symptoms (p< 0.05, functional limitations (p < 0.001, emotional well-being (p < 0.001, and social well-being (p < 0.001 subscale scores as well as on the overall P-CPQ score (p < 0.001, even after having been adjusted for the controlling variables. Conclusions: Parents/caregivers reported a negative impact of malocclusion on adolescents’ OHRQoL. Increased severity of malocclusion is associated with higher adverse impact on OHRQoL.

  8. What Is the End of Life Period? Trajectories and Characterization Based on Primary Caregiver Reports.

    Science.gov (United States)

    Cohen-Mansfield, Jiska; Cohen, Rinat; Skornick-Bouchbinder, Michal; Brill, Shai

    2018-04-17

    As the population lives longer, end of life (EOL) is emerging as a distinct life phase, about which there is still limited understanding. Characterizing this important period is vital for clarifying issues regarding trajectory and decline at EOL and for health service planning on an institutional, communal, and societal level. In this article, we aim to characterize the EOL period, examining the duration and number of EOL stages, as well as functional, attitudinal, and emotional trajectories. In this cross-sectional study, 70 primary caregivers of deceased persons were interviewed. Standardized rates of functional, attitudinal, and emotional change across the EOL period were calculated. Frequencies were compared using the McNemar statistical test. EOL period was found to have a median length of 3.25 years, and an average of approximately three progressive stages. The duration of EOL stages tended to decrease as death approached. Unexpected events (eg new medical diagnosis/accident) served as the precipitating event for the EOL period for approximately half of the deceased persons, and changes in existing conditions (eg health status/cognitive state) were also reported to precipitate EOL for a similar proportion. Reports of functionality across stages found the steepest decline in the "physical" domain and the most moderate decline in the "social" domain. With each stage, positive indicators, such as "will to live," showed a progressive decline, whereas negative indicators, including "suffering" and "dependence level," progressively increased. Results help characterize EOL trajectories and should inform care planning and decision making at various levels. In addition, they suggest a methodology for better understanding EOL.

  9. Kenya’s Life Lessons through the Lived Experience of Rural Caregivers

    Directory of Open Access Journals (Sweden)

    Amy Cappiccie

    2017-11-01

    Full Text Available This qualitative research study used a phenomenological lens to examine the perspectives of familial caregivers in the Laikipia Region of Kenya. Through the narrative of the caregivers’ lived experience, key factors identified included social supports, rewards of caregiving, and lessons to others. Overarching basic themes centered on food insecurity, disease, rejection, lack of support, education challenges, inadequate land ownership, the absence of male support and neglect issues. These unique perspectives can contribute towards our understanding of policy and programming needs for orphaned children and familial caregivers in rural Kenya and within the rural areas of the East African context.

  10. Informing social work practice through research with parent caregivers of a child with a life-limiting illness.

    Science.gov (United States)

    Cadell, Susan; Kennedy, Kimberly; Hemsworth, David

    2012-01-01

    Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful experience that compounds the usual challenges of parenting. The negative aspects of caring for a child with an LLI are well documented. In the face of such adversity, parent caregivers can also experience positive changes caring for children with even the most serious conditions. This article presents results from a research study of posttraumatic growth in parents who are caring for a child with a LLI. Using mixed methods, two overarching themes were prominent in both the quantitative and qualitative data. The first describes stress related to financial burden associated with caregiving. The second theme concerns the posttraumatic growth experienced by the parent caregivers. The quantitative and qualitative data have been woven together to underscore issues and parental perspectives related to these two themes. This provides a unique and important platform for parent caregivers' experiences that can inform the work of social workers and other pediatric palliative care professionals.

  11. Health-related quality of life in multiple sclerosis: role of cognitive appraisals of self, illness and treatment.

    Science.gov (United States)

    Wilski, Maciej; Tasiemski, Tomasz

    2016-07-01

    Health-related quality of life (HRQoL) is considered an important measure of treatment and rehabilitation outcomes in multiple sclerosis (MS) patients. In this study, we used multivariate regression analysis to examine the role of cognitive appraisals, adjusted for clinical, socioeconomic and demographic variables, as correlates of HRQoL in MS. The cross-sectional study included 257 MS patients, who completed Multiple Sclerosis Impact Scale, Generalized Self-Efficacy Scale, Rosenberg Self-Esteem Scale, Brief Illness Perception Questionnaire, Treatment Beliefs Scale, Actually Received Support Scale (a part of Berlin Social Support Scale) and Socioeconomic Resources Scale. Demographic and clinical characteristics of the participants were collected with a self-report survey. Correlation and regression analyses were conducted to determine associations between the variables. Five variables, illness identity (β = 0.29, p ≤ 0.001), self-esteem (β = -0.22, p ≤ 0.001), general self-efficacy (β = -0.21, p ≤ 0.001), disability subgroup "EDSS" (β = 0.14, p = 0.006) and age (β = 0.12, p = 0.012), were significant correlates of HRQoL in MS. These variables explained 46 % of variance in the dependent variable. Moreover, we identified correlates of physical and psychological dimensions of HRQoL. Cognitive appraisals, such as general self-efficacy, self-esteem and illness perception, are more salient correlates of HRQoL than social support, socioeconomic resources and clinical characteristics, such as type and duration of MS. Therefore, interventions aimed at cognitive appraisals may also improve HRQoL of MS patients.

  12. The effect of a supportive educational program based on COPE model on caring burden and quality of life in family caregivers of women with breast cancer.

    Science.gov (United States)

    Bahrami, Masoud; Farzi, Saba

    2014-03-01

    The family caregivers of the people with cancer such as breast cancer experience a decrease in their quality of life and an increase of their caring burden. In most of the cases, the researchers consider the quality of life and physical and psychological problems in patients with cancer and pay less attention to the family caregivers. To reduce the caring burden imposed to the caregivers and improve their quality of life, supportive strategies such as problem solving can be used. These interventions may have benefits for the caregivers although the research results are contradictory. The aim of this research was to determine the effect of a supportive educational program, based on COPE model, which focuses on creativity, optimism, planning, and expert information on individuals, on the caring burden and quality of life in the family caregivers of women with breast cancer. The present study is a clinical trial, which was conducted in Seyed-Al-Shohada Hospital of Isfahan University of Medical Sciences and a private center of chemotherapy in 2012. In this study, researchers investigated the effect of a supportive educational program based on COPE model on the caring burden and quality of life in the family caregivers of women with breast cancer. This supportive educational program included two hospital visits and two telephone sessions based on COPE model for 9 days. A total of 64 patients were selected based on the inclusion criteria and randomly assigned into two groups. Data were collected by use of Caregiver Quality of Life Index-Cancer (CQOL-C), World Health Organization Quality of Life - Bref(WHOQOL-Bref)_, and Zarit caring burden at the beginning of the intervention and a month after the intervention. The results showed that in the experimental group, the mean score of physical, mental, spiritual, environmental domains and overall quality of life in the family caregivers was significantly increased compared to the control group, but there was no change in the

  13. Negotiation, Mediation and Communication between Cultures: End-of-Life Care for South Asian Immigrants in Canada from the Perspective of Family Caregivers.

    Science.gov (United States)

    Weerasinghe, Swarna; Maddalena, Victor

    2016-01-01

    In the present study, we explored family caregivers' experiences in providing end-of-life care for terminally ill South Asian immigrants. We employed qualitative methods and. in-depth interviews were conducted with seven family caregivers living in Nova Scotia, Canada. Interview data were validated, coded and organized for themes. Three major themes identified in the data illustrated (a) how South Asian caregivers experienced clashes between biomedical and ethno-cultural realms of care that led to cultural insensitivity, (b) how family members acted as mediators, and (c) how communication issues that challenged cultural sensitivity were handled. Findings provide directions for culturally sensitive end-of-life care planning.

  14. Psychological features and quality of life in 50 adult patients with epilepsy and their caregivers from the Lecco epilepsy center, Italy.

    Science.gov (United States)

    Petruzzi, Alessandra; Rigamonti, Andrea; Finocchiaro, Claudia Yvonne; Borelli, Paolo; Lamperti, Elena; Silvani, Antonio; Regazzoni, Rossana; Stanzani, Lorenzo; Salmaggi, Andrea

    2017-06-01

    Epilepsy is one of the most common neurological disorders. To the best of our knowledge, in Italy, the relationship between patients' and caregivers' psychological state has rarely been analyzed. Thus, we sought to evaluate both the psychological state of patients with epilepsy and that of their caregivers and the interrelationship between them. We also assessed the existing relation between psychological features and some clinical and demographic information, such as number of antiepileptic drugs (AEDs), epilepsy duration and education level of patients and their caregivers. We enrolled in the study 50 consecutive adult patients attending the epilepsy clinic of "A. Manzoni" Hospital and their caregivers. Both patients and their caregivers were administered Hospital Anxiety and Depression Scale (HADS) and 36-item Short-Form Health Survey (SF-36). Anxiety, depression and quality of life values of both patients and their caregivers did not differ significantly from the normative samples. No statistically significant correlation between epilepsy duration and patients' and caregivers' psychological features was found. Patients which took more than one AED reported lower values of "Vitality" (p epilepsy may have an impact on the psychological state of adult patients with epilepsy and their caregivers, our results highlight the role of multidimensional determinants, including stigma. Further studies are needed to identify the factors related to epilepsy, patients, caregivers, treatments, and the environment that may be modifiable in order to improve self-perceived QoL. Copyright © 2017 Elsevier Inc. All rights reserved.

  15. The CAREQOL-MS was a useful instrument to measure caregiver quality of life in multiple sclerosis.

    Science.gov (United States)

    Benito-León, Julián; Rivera-Navarro, Jesús; Guerrero, Angel Luis; de Las Heras, Virginia; Balseiro, José; Rodríguez, Elena; Belló, Mireia; Martínez-Martín, Pablo

    2011-06-01

    To develop and test the first specific instrument for assessing caregiver health-related quality of life (HRQOL) in multiple sclerosis (MS) (CAREQOL-MS). Questionnaire items were derived from a literature review and the views of patients, caregivers, and experts. Instrument was reduced after the analyses of caregivers' interviews and experts' opinions. CAREQOL-MS psychometric properties were assessed in 276 MS caregivers. The final version consisted of 24 items (five subscales) and was free of floor or ceiling effects. For subscales, the Cronbach's alpha coefficient ranged from 0.75 to 0.90. The item-total correlation was 0.62-0.74 for subscale I (physical burden/global health); 0.56-0.74 for subscale II (social impact); 0.52-0.62 for subscale III (emotional impact), and 0.58-0.65 for subscale IV (need of help); subscale V (emotional reactions) had only two items. The intraclass correlation coefficient (0.96 for the total score; 0.75-0.95 for subscales) suggested satisfactory reproducibility. Association was close between CAREQOL-MS subscales and the Zarit burden interview and moderate with short form 36 mental/physical components. CAREQOL-MS subscales scores significantly increased (worse HRQOL) with increasing caregivers' age and Expanded Disability Status Scale. The standard error of the measurement ranged from 0.91 to 2.43 for subscales. Our results provided initial evidence of the usefulness and satisfactory psychometric properties of the CAREQOL-MS. Copyright © 2011 Elsevier Inc. All rights reserved.

  16. An overview and evaluation of the oncology family caregiver project: improving quality of life and quality of care for oncology family caregivers.

    Science.gov (United States)

    Ferrell, Betty; Hanson, Jo; Grant, Marcia

    2013-07-01

    With changes in health care, oncology family caregivers (FCs) provide the vast majority of patient care. Yet, FCs assume their role with little or no training and with limited resources within the cancer setting to support them. The purpose of this project is to develop and implement a curriculum to improve the quality of life and quality of care for FCs by strengthening cancer care settings in this area. A National Cancer Institute (NCI) R25 grant funded the development of an FC curriculum for professional healthcare providers. The curriculum, based on the City of Hope Quality-of-Life Model, is presented to professionals from cancer centers in national training courses. The project brings together the most current evidence-based knowledge and multiple resources to help improve FC support. Participants develop goals related to implementation and dissemination of the course content and resources in their home institution. Goal evaluation follows at 6, 12, and 18 months. To date, three courses have been presented to 154 teams (322 individuals) representing 39 states. Course evaluations were positive, and participants have initiated institutional FC support goals. Although the goals are diverse, the broad categories include support groups, staff/FC/community education, resource development, assessment tools, and institutional change. There is a critical need to improve support for cancer FCs. This FC training course for professionals is a first step in addressing this need. Copyright © 2012 John Wiley & Sons, Ltd.

  17. Productive criticism, Part 2: A new environment for criticism. Performance appraisals and other real-life situations.

    Science.gov (United States)

    Weisinger, H D

    1996-01-01

    Criticism affects almost all aspects of your job: the quality of work you do, how you feel about it, and your relationships with your boss, coworkers, and subordinates. Used productively, criticism is a powerful tool that helps you improve your work, enhance your working relationships, increase your job satisfaction, and achieve better overall results. Improperly used, it impedes performance, demoralizes you, discourages you from wanting to try again, and creates friction in the workplace. In short, the ability to give and take criticism significantly determines how well you do on the job. In Part 1, we explained how to use productive criticism as an opportunity for the growth and education of subordinates. In Part 2, we will examine how you can productively criticize superiors and peers. We will also offer new performance appraisal technics and examine real-life criticism situations.

  18. The effect of psycho-educational interventions on the quality of life of the family caregivers of the patients with spinal cord injury: a randomized controlled trial.

    Science.gov (United States)

    Molazem, Zahra; Falahati, Tayebeh; Jahanbin, Iran; Jafari, Peyman; Ghadakpour, Soraya

    2014-01-01

    Family caregivers usually report the reduction of their life quality due to one of the family member's spinal cord injury. Thus, the present study aimed to investigate the effectiveness of psycho-educational interventions on the life quality of the family caregivers of the patients with spinal cord injury. The present randomized controlled trial was conducted on 72 family caregivers who had the primary responsibility of taking care of the patients with spinal cord injury. The participants were randomly divided into intervention (n=36) and control groups (n=36). The intervention group was involved in 90-minute educational sessions held once a week for four weeks. Both groups completed SF-36 questionnaire before and 2 and 6 weeks after the intervention. Then, the data were analyzed through independent t-test, Chi-square, and repeated measures ANOVA. All the caregivers had low quality of life and the lowest mean score was related to mental health in both groups. After the intervention, various dimensions of life quality had improved in the intervention group's caregivers compared to the control group (Peducational interventions on the life quality of the caregivers of the patients with spinal cord injury. According to the results, the authorities have to pay special attention to the problems of this group and educational interventions have to be continuously followed. IRCT2013070811388N2.

  19. The impact of older person's frailty on the care-related quality of life of their informal caregiver over time: results from the TOPICS-MDS project.

    Science.gov (United States)

    Oldenkamp, Marloes; Hagedoorn, Mariët; Wittek, Rafael; Stolk, Ronald; Smidt, Nynke

    2017-10-01

    To examine the impact of changes in an older person's frailty on the care-related quality of life of their informal caregiver. Five research projects in the TOPICS-MDS database with data of both older person and informal caregiver at baseline and after 12 months follow-up were selected. Frailty was measured in five health domains (functional limitations, psychological well-being, social functioning, health-related quality of life, self-rated health). Care-related quality of life was measured with the Care-Related Quality of Life instrument (CarerQoL-7D), containing two positive (fulfilment, perceived support) and five negative dimensions (relational problems, mental health problems, physical health problems, financial problems, problems combining informal care with daily activities). 660 older person/caregiver couples were included. Older persons were on average 79 (SD 6.9) years of age, and 61% was female. Caregivers were on average 65 (SD 12.6) years of age, and 68% was female. Results of the multivariable linear and logistic regression analyses showed that an increase in older person's frailty over time was related to a lower total care-related quality of life of the caregiver, and to more mental and physical health problems, and problems with combining informal care with daily activities at follow-up. A change in the older person's psychological well-being was most important for the caregiver's care-related quality of life, compared to the other health domains. Health professionals observing decreasing psychological well-being of an older person and increasing hours of informal care provision should be aware of the considerable problems this may bring to their informal caregiver, and should tailor interventions to support informal caregivers according to their specific needs and problems.

  20. Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life

    Directory of Open Access Journals (Sweden)

    Eliana Lourenço Borges

    Full Text Available ABSTRACT Objective: Patients with lung cancer experience different feelings and reactions, based on their family, social, cultural, and religious backgrounds, which are a source of great distress, not only for the patients but also for their family caregivers. This study aimed to evaluate the impact that lung cancer stage and quality of life (QoL of lung cancer patients have on caregiver burden. Methods: This was a prospective cross-sectional study. Consecutive patient-caregiver dyads were selected and asked to complete the Hospital Anxiety and Depression Scale and the Medical Outcomes Study 36-item ShortForm Health Survey (SF-36. Family caregivers also completed the Caregiver Burden Scale. Group-based modeling was used in order to identify patients with early- or advanced-stage cancer (IA to IIIA vs. IIIB to IV plus non-impaired or impaired QoL (SF36 total score > 50 vs. ≤ 50. Patient-caregiver dyads were stratified into four groups: early-stage cancer+non-impaired QoL; advanced-stage cancer+non-impaired QoL; early-stage cancer+impaired QoL; and advanced-stage cancer+impaired QoL. Results: We included 91 patient-caregiver dyads. The majority of the patients were male and heavy smokers. Family caregivers were younger and predominantly female. The burden, QoL, level of anxiety, and level of depression of caregivers were more affected by the QoL of the patients than by their lung cancer stage. The family caregivers of the patients with impaired QoL showed a higher median burden than did those of the patients with non-impaired QoL, regardless of disease stage. Conclusions: Caregiver burden is more affected by patient QoL than by lung cancer stage.

  1. Informal Caregiver Challenges for Advanced Cancer Patients During End-of-Life Care in Johannesburg, South Africa and Distinctions Based on Place of Death.

    Science.gov (United States)

    O'Neil, Daniel S; Prigerson, Holly G; Mmoledi, Keletso; Sobekwa, Mfanelo; Ratshikana-Moloko, Mpho; Tsitsi, Jacob M; Cubasch, Herbert; Wong, Michelle L; Omoshoro-Jones, Jones A O; Sackstein, Paul E; Blinderman, Craig D; Jacobson, Judith S; Joffe, Maureen; Ruff, Paul; Neugut, Alfred I; Blanchard, Charmaine L

    2018-03-28

    In sub-Saharan Africa, late diagnosis with cancer is common. Many dying patients rely on family members for care; little is known about the challenges African informal caregivers face. To better understand the challenges of informal caregivers at the end of life in South Africa, both at home and in inpatient facilities. We included advanced cancer patients and caregivers from a public hospital in Johannesburg, South Africa. Study nurses interviewed patients and caregivers about their experiences. Using univariate and multivariate analyses, we determined the factors associated with greater caregiver difficulty, focusing on patients dying at home vs. in inpatient facilities. Among 174 informal caregivers, 62 (36%) reported "a lot" of challenges. These caregivers struggled most with keeping the patient clean (16%) and with patient interactions (34%). Symptoms associated with greater difficulty included pain (odds ratio [OR] 2.4 [95% CI 1.2-4.7]), urinary incontinence (OR 2.3 [95% CI 1.1-4.9]), fecal incontinence (OR 2.4 [95% CI 1.0-5.7]), insomnia (OR 2.9 [95% CI 1.3-6.9]), fatigue (OR 6.3 [95% CI 1.8-21.6]), extremity weakness (OR 2.9 [95% CI 1.3-6.9]), shame (OR 4.2 [95% CI 1.5-12.0]), and sadness (OR 2.3 [95% CI 1.1-4.8]). Caregivers of patients dying at home reported the greatest difficulty with patients' physical symptoms; caregivers of those dying in facilities reported the greatest difficulty with emotional symptoms. Informal caregivers of patients dying at home reported challenges with practical functional care; this effect was reduced in the inpatient setting. Skills training for these caregivers could relieve some of this burden. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  2. Caregiving burden and uplifts: a contradiction or a protective partnership for the quality of life of parents and their children with asthma?

    Science.gov (United States)

    Silva, Neuza; Carona, Carlos; Crespo, Carla; Canavarro, Maria Cristina

    2015-04-01

    Parental caregiving in the context of pediatric chronic conditions is a multifaceted experience that encompasses negative (burdens) and positive dimensions (uplifts), which may support risk and protective processes that influence family adaptation. This study aimed to examine the caregiving experience of parents caring for a child with asthma and the moderating role of caregiving uplifts on the associations between caregiving burden and quality of life (QoL) of parents and their children. Participants were 180 dyads of children/adolescents with asthma between 8 and 18 years of age and one of their parents. The parents reported on caregiving burden and uplifts and on their QoL, and the children/adolescents completed a self-report measure of generic QoL. Results showed that although parents of children with intermittent asthma and parents of younger children presented higher levels of caregiving burden, noncontrolled asthma was the only clinical variable representing a significant risk factor for decreased QoL in children. Significant negative and positive associations were found between burden dimensions and QoL and between caregiving uplifts and QoL, respectively, in parents and children. Additionally, caregiving uplifts moderated the negative link between relationship burden and parents' QoL. These results suggest that, far from being contradictory, caregiving uplifts may co-occur with high levels of burden and may constitute a protective factor against the deleterious effect of the caregiving burden on parents' QoL and a resource that directly contributes to children's QoL. This risk-resistance approach to family caregiving may contribute to operationalizing strength-based interventions in the context of pediatric asthma. (c) 2015 APA, all rights reserved).

  3. Infant sleep and paternal involvement in infant caregiving during the first 6 months of life.

    Science.gov (United States)

    Tikotzky, Liat; Sadeh, Avi; Glickman-Gavrieli, Tamar

    2011-01-01

    The goals of this study were to assess: (a) the involvement of fathers and mothers in overall and nighttime infant caregiving; (b) the links between paternal involvement in infant care and infant sleep patterns during the first 6 months. Fifty-six couples recruited during their first pregnancy, participated in the study. After delivery (1 and 6 months), both parents completed a questionnaire assessing the involvement of fathers relative to mothers in infant caregiving. Infant sleep was assessed using actigraphy and sleep diaries. Mothers were significantly more involved than fathers in daytime and nighttime caregiving. A higher involvement of fathers in overall infant care predicted and was associated with fewer infant night-wakings and with shorter total sleep time after controlling for breastfeeding. The findings highlight the importance of including fathers in developmental sleep research. Future studies should explore mechanisms underlying the relations between paternal involvement and infant sleep.

  4. Dealing with Daily Challenges in Dementia (Deal-id Study): An Experience Sampling Study to Assess Caregivers' Sense of Competence and Experienced Positive Affect in Daily Life.

    Science.gov (United States)

    van Knippenberg, Rosalia J M; de Vugt, Marjolein E; Ponds, Rudolf W; Myin-Germeys, Inez; Verhey, Frans R J

    2017-08-01

    Positive emotions and feelings of competence seem to play an important role in the well-being of caregivers of people with dementia. Both are likely to fluctuate constantly throughout the caretaking process. Unlike standard retrospective methods, momentary assessments in daily life can provide insight into these moment-to-moment fluctuations. Therefore, in this study both retrospective and momentary assessments were used to examine the relationship between caregivers' sense of competence and their experienced positive affect (PA) in daily life. Thirty Dutch caregivers provided momentary data on PA and daily sense of competence ratings for 6 consecutive days using the experience sampling methodology. Additionally, they reported retrospectively on their sense of competence with a traditional questionnaire. A positive association was found between retrospective and daily measured sense of competence. Caregivers reported corresponding levels of sense of competence on both measures. Both daily and retrospective sense of competence were positively associated with the experienced levels of PA. However, daily sense of competence appeared to be the strongest predictor. Regarding the variability in PA, only daily sense of competence showed a significant association, with a higher daily sense of competence predicting a more stable PA pattern. This study provides support for redirecting caregiver support interventions toward enhancement of positive rather than negative experiences and focusing more on caregivers' momentary emotional experiences. Momentary assessments are a valuable addition to standard retrospective measures and provide a more comprehensive and dynamic view of caregiver functioning. Copyright © 2016 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

  5. Stroke survivors’ levels of community reintegration, quality of life, satisfaction with the physiotherapy services and the level of caregiver strain at community health centres within the Johannesburg area

    Directory of Open Access Journals (Sweden)

    Adrian Kusambiza-Kiingi

    2017-03-01

    Full Text Available Background: Stroke survivors are discharged home before they are functionally independent and return home with activity limitations that would not be manageable without a caregiver. Aim: To determine stroke survivors’ levels of community reintegration, quality of life (QOL, satisfaction with the physiotherapy services and the level of caregiver strain at community health centres within the Johannesburg area. Method: This was a cross-sectional study using the following outcome measures: Maleka Stroke Community Reintegration Measure, Stroke-specific quality of life scale, Caregiver strain index and Physical therapy patient satisfaction questionnaire. Results: A total of 108 stroke survivors and 45 caregivers participated in this study. The average age of the stroke survivors was 54 years (standard deviation = 12.73 and 58% (n = 62 had moderate to full community reintegration. They were happy with physiotherapy services but not with parking availability and cost of services. The QOL was poor with the lowest scores for energy and highest scores for vision and language domains. Twenty five (55% caregivers were strained. A positive correlation was found between community reintegration and satisfaction with services (r = 0.27, p < 0.0001 and QOL (r = 0.51, p < 0.0001. A negative correlation was found between community reintegration and caregiver strain (r = -0.37, p < 0.0001. Conclusion: Most stroke survivors are reintegrated into their communities except in the areas of work and education and have poor QOL and most of their caregivers are strained; however, they are satisfied with physiotherapy services.

  6. A Disproportionate Burden of Care: Gender Differences in Mental Health, Health-Related Quality of Life, and Social Support in Mexican Multiple Sclerosis Caregivers

    Directory of Open Access Journals (Sweden)

    Paul B. Perrin

    2015-01-01

    Full Text Available Background. Multiple sclerosis (MS rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. Methods. This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Burden Inventory, health-related quality of life (HRQOL; Short Form-36, and social support (Interpersonal Support Evaluation List-12 in 81 (66.7% women Mexican MS caregivers. Results. As compared to men caregivers, women had lower mental health (p=0.006, HRQOL (p<0.001, and social support (p<0.001. This was partially explained by women caregivers providing care for nearly twice as many hours/week as men (79.28 versus 48.48, p=0.018 and for nearly three times as many months (66.31 versus 24.30, p=0.002. Conclusions. Because gender roles in Latin America influence women to assume more substantial caregiving duties, MS caregiver interventions in Latin America—particularly for women caregivers—should address the influence of gender-role conformity on care and psychosocial functioning.

  7. An appraisal of William Thomas Green Morton's life as a narcissistic personality.

    Science.gov (United States)

    Martin, Ramon F; Wasan, Ajay D; Desai, Sukumar P

    2012-07-01

    The troubled life and death of William Thomas Green Morton has been described in several texts. His first public demonstration of ether anesthesia was the highpoint of a life that was less than successful in many of his endeavors. Close examination of this life reveals a pattern of behavior that progresses from narcissistic traits to narcissistic personality pathology. This retrospective psychiatric analysis of Morton's life was undertaken to theorize as to why Morton, after having successfully demonstrated ether anesthesia, did not continue to develop anesthesia as a clinical specialty. Biographies about Morton were used to explore details of his life. The Diagnostic and Statistical Manual of Mental Disorders classification of narcissistic personality disorder was used to analyze his life. We conclude that Morton progressed from displaying narcissistic personality trait to disorder over his lifetime.

  8. Patients' self-perceived burden, caregivers' burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study.

    Science.gov (United States)

    Geng, Dan; Ou, RuWei; Miao, XiaoHui; Zhao, LiHong; Wei, QianQian; Chen, XuePing; Liang, Yan; Shang, HuiFang; Yang, Rong

    2017-10-01

    This study surveys the quality of life of amyotrophic lateral sclerosis patients and the factors associated with amyotrophic lateral sclerosis patients' self-perceived burden and their caregivers' burden. Burdens of patients with amyotrophic lateral sclerosis and their caregivers in Chinese population are largely unknown. A cross-sectional study was conducted among 81 pairs of amyotrophic lateral sclerosis patients and their caregivers. Amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden were assessed by the Self-Perceived Burden Scale and Zarit-Burden Interview, respectively. Quality of life of amyotrophic lateral sclerosis patients was measured using the World Health Organization Quality of Life-Bref. The amyotrophic lateral sclerosis Functional Rating Scale-Revised questionnaire was used to estimate patients' physical function. Both patients and caregivers reported a mild to moderate burden. The World Health Organization quality of life-Bref scores were decreased in respondents with lower amyotrophic lateral sclerosis Functional Rating Scale-Revised, higher Self-Perceived Burden Scale and higher Zarit-Burden Interview scores. Self-Perceived Burden Scale scores were associated with patients' knowledge of amyotrophic lateral sclerosis, respiratory function and female sex. Zarit-Burden Interview scores were associated with caregivers' age, patients' motor function and out-of-pocket payment. With increase in amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden, quality of life of amyotrophic lateral sclerosis patients decreased. Female patients, who had known more about the disease, and those with severe respiratory dysfunction were subject to higher self-perceived burden. Older caregivers and caregivers of patients with severe motor dysfunction and more out-of-pocket payment experienced more care burdens. Our study suggests that paying more attention to female amyotrophic lateral sclerosis patients

  9. Moving beyond caregiver burden: identifying helpful interventions for family caregivers.

    Science.gov (United States)

    Sorrell, Jeanne M

    2014-03-01

    Family members serving as informal caregivers for loved ones often experience physical, psychological, emotional, social, and financial consequences that can be conceptualized as caregiver burden. As the number of older adults in our society continues to increase, there will be even more demand for family caregivers. It is important to move beyond a focus on the statistics and characteristics of caregiver burden and identify helpful interventions to reduce this burden. Interventions that decrease caregiver burden can enable family caregivers to delay placement of the individual in an institutional setting and improve quality of life for both the caregiver and care recipient. Copyright 2014, SLACK Incorporated.

  10. Balancing the Responsibilities of Work and Family Life: Results of the Family Caregiver Survey.

    Science.gov (United States)

    Brennan, Eileen M.; Poertner, John

    1997-01-01

    Patterns of work and family balance were examined for 184 employed parents of children with serious emotional disorders. Results found that caregivers employed outside the home had higher levels of job stress than those working in the home but reported using work as a way of coping. (CR)

  11. Family Caregivers as Lay Trainers: Perceptions of Learning and the Relationship between Life Experience and Learning

    Science.gov (United States)

    Conceição, Simone C.O.; Johaningsmeir, Sarah; Colby, Holly; Gordon, John

    2014-01-01

    This article describes an initiative to train lay people, predominantly parents of children and youth with special health care needs (CYSHCN), to teach "Bridge to Independence"--a care coordination curriculum--to other family caregivers of CYSHCN. Using a model based on Kirkpatrick and Kirkpatrick's levels of evaluation, the goal…

  12. The Satisfaction With Life Scale (SWLS) : appraisal with 1700 healthy young adults in The Netherlands

    NARCIS (Netherlands)

    Arrindell, W.A.; Heesink, J.A.M.; Feij, J.A.

    The Satisfaction With Life Scale (SWLS) was developed in the U.S.A. to represent a multi-item scale for the overall assessment of life satisfaction as a cognitive-judgemental process, rather than for the measurement of specific satisfaction domains (e.g. health, material wealth). The present study

  13. The satisfaction with Life Scale (SWLS): Appraisal with 1700 healthy young adults in The Netherlands

    NARCIS (Netherlands)

    Arrindell, W.; Heesink, J.; Feij, J.A.

    1999-01-01

    The Satisfaction With Life Scale (SWLS) was developed in the U.S.A. to represent a multi-item scale for the overall assessment of life satisfaction as a cognitive-judgemental process, rather than for the measurement of specific satisfaction domains (e.g. health, material wealth). The present study

  14. Caregivers' perception of oral health-related quality of life in a group of Nigerian children living with human immunodeficiency virus.

    Science.gov (United States)

    Adeniyi, A A; Diaku-Akinwumi, I N; Ola, B A

    2016-01-01

    This study examined the caregivers' perception of the effect of dental conditions on general well-being and family life of a group of human immunodeficiency virus (HIV)-infected Nigerian children. A secondary aim was to investigate correlations between the children's sociodemographic and health-related variables and caregivers' global ratings of oral health and well-being. Study Design A cross-sectional questionnaire-based survey was conducted among parents/caregivers of 95 HIV-positive children receiving care at the Lagos State University Teaching Hospital, Nigeria. The "Parental-Caregivers Perception Questionnaire" which included measures of global ratings of oral health and well-being as well as effects of oral health on domains of oral symptoms, functional limitations, emotional well-being, and family well-being/parental distress was used. Assessment was based on the child's oral health within the preceding 3 months of the study. The most affected subscale of the oral health-related quality of life was functional limitation followed by parental distress and then oral symptoms. Caregivers of older children were 2½ times more likely to view oral health as impacting their child's overall health (P = 0.034). Furthermore, caregivers of children who had not yet commenced antiretroviral therapy were 15% more likely to report oral symptoms (P = 0.024) and 11% were more likely to be distressed. Data entry, validation, and analysis were done using SPSS version 17.0. Findings were considered to be statistically significant when 95% confidence intervals were not overlapping. According to caregivers' perceptions, oral symptoms, functional limitations, and parental distress outweighed emotional well-being in impacting a child's oral health quality of life. Oral health programs to improve the knowledge of caregivers on the importance of oral health in HIV-positive children are necessary for improvement in overall quality of life.

  15. Beyond quality of life: a cross sectional study on the mental health of patients with chronic kidney disease undergoing dialysis and their caregivers.

    Science.gov (United States)

    Pereira, Beatriz Dos Santos; Fernandes, Neimar da Silva; de Melo, Nayara Pires; Abrita, Renata; Grincenkov, Fabiane Rossi Dos Santos; Fernandes, Natália Maria da Silva

    2017-04-17

    Patients with terminal chronic kidney disease (CKDT) requiring renal replacement therapies (RRT) undergo important changes in living habits and frequently need caregiving. These patients and their caregivers are risk groups for the development of physical and psychological symptoms. This study aimed to evaluate the prevalence of anxiety, depression, stress, fatigue, social support, and quality of life in patients with CKD and their caregivers. This cross sectional study was conducted with 21 patients and their caregivers, from January to September 2015. We included patients aged over 18 years, with at least 6 months on dialysis treatment, and caregivers who were family members. The participants' social, demographic, clinical, laboratory, and psychological variables were evaluated. A descriptive analysis and an examination of the association between patients and caregivers were performed. Among patients, we observed that 38.1% had symptoms that indicated anxiety and depression. The average score for practical social support was 3.15 ± 0.769 and that for emotional social support was 3.16 ± 0.79. As for fatigue, 14.3% of patients reported being 'extremely tired' and 14.3% reported that they engaged in all the activities they usually performed before the illness. Further, 57.1% presented stress, and of these, 66.7% were at the resistance stage, with predominance of psychological symptoms in 60.0%. The quality of life domain in terms of functional capacity (FC) presented a correlation with haemoglobin level (r = 0.581, p = 0.006) and non-anaemic patients presented better FC. Among caregivers, we observed symptoms that indicated anxiety and depression in 33.3% of the sample. Caregivers exhibited an average score of 2.88 ± 0.77 for practical social support and 3.0 ± 0.72 for emotional social support. Further, 14.3% reported being 'extremely tired' and 28.8% reported that they engaged in all activities that they usually performed before the

  16. The effects of poverty on childhood brain development: the mediating effect of caregiving and stressful life events.

    Science.gov (United States)

    Luby, Joan; Belden, Andy; Botteron, Kelly; Marrus, Natasha; Harms, Michael P; Babb, Casey; Nishino, Tomoyuki; Barch, Deanna

    2013-12-01

    IMPORTANCE The study provides novel data to inform the mechanisms by which poverty negatively impacts childhood brain development. OBJECTIVE To investigate whether the income-to-needs ratio experienced in early childhood impacts brain development at school age and to explore the mediators of this effect. DESIGN, SETTING, AND PARTICIPANTS This study was conducted at an academic research unit at the Washington University School of Medicine in St Louis. Data from a prospective longitudinal study of emotion development in preschool children who participated in neuroimaging at school age were used to investigate the effects of poverty on brain development. Children were assessed annually for 3 to 6 years prior to the time of a magnetic resonance imaging scan, during which they were evaluated on psychosocial, behavioral, and other developmental dimensions. Preschoolers included in the study were 3 to 6 years of age and were recruited from primary care and day care sites in the St Louis metropolitan area; they were annually assessed behaviorally for 5 to 10 years. Healthy preschoolers and those with clinical symptoms of depression participated in neuroimaging at school age/early adolescence. EXPOSURE Household poverty as measured by the income-to-needs ratio. MAIN OUTCOMES AND MEASURES Brain volumes of children's white matter and cortical gray matter, as well as hippocampus and amygdala volumes, obtained using magnetic resonance imaging. Mediators of interest were caregiver support/hostility measured observationally during the preschool period and stressful life events measured prospectively. RESULTS Poverty was associated with smaller white and cortical gray matter and hippocampal and amygdala volumes. The effects of poverty on hippocampal volume were mediated by caregiving support/hostility on the left and right, as well as stressful life events on the left. CONCLUSIONS AND RELEVANCE The finding that exposure to poverty in early childhood materially impacts brain

  17. Applying feminist, multicultural, and social justice theory to diverse women who function as caregivers in end-of-life and palliative home care.

    Science.gov (United States)

    Mackinnon, Christopher J

    2009-12-01

    Women are largely responsible for providing care to terminally ill family members at home. The goal of this review is to conceptualize diverse women's experiences in palliative home care from feminist, multicultural, and social justice perspectives. Peer-reviewed manuscripts were identified using the following databases: CIMAHL, psycINFO, and pubMED. The following search terms were used: women/mothers/daughters, Caregiving, family caregivers, feminism, culture, multiculturalism, and palliative home care. Article reference lists were also reviewed. The majority of penitent articles which formed the basis for the arguments presented were drawn from nursing, medicine, and counseling psychology scholarship. The application of feminist, multicultural, and social justice theory brings to attention several potential issues female caregivers may experience. First, there exist diverse ways in which women's Caregiving is manifested that tend to correspond with variations in culture, relationship, and age. Second, it is important to attend to changing expectations placed on women as a result of Caregiving at the end of life. Third, the changing power dynamics women may experience in end of life Caregiving are very complex. The principle finding of the review was the highlighting of potential risks that culturally diverse female caregivers are likely to face at the end of life. The application of social justice theory provides a number of implications for practice and policy. Specifically, the identifying significant concerns regarding female caregivers in palliative home care, as well as suggesting ways to appropriately attend to these concerns, and oppression of women is less likely to be perpetuated, specific areas for future research in this domain are identified.

  18. Application of Dyadic Data Analysis in Pediatric Psychology: Cystic Fibrosis Health-Related Quality of Life and Anxiety in Child–Caregiver Dyads

    Science.gov (United States)

    Schatschneider, Christopher; McGinnity, Kelly; Modi, Avani C.

    2012-01-01

    Objective To demonstrate the use of the actor–partner interdependence model (APIM) of dyadic relationships in a sample of children with cystic fibrosis (CF) and their caregivers. Methods Multilevel modeling evaluated relations between health-related quality of life (HRQOL) and anxiety in 29 child–caregiver dyads. The following effects were evaluated: actor and partner, and the respondent (i.e., child or caregiver) × HRQOL interaction. Results This study demonstrated a practical application of the APIM. Significant actor effects were found (i.e., lower child HRQOL was associated with increased child anxiety, caregiver anxiety increased as caregiver perceptions of their child's HRQOL decreased), but not partner effects. The significant interaction indicated that the effects were different for children and caregivers. Conclusions The APIM has the potential to increase pediatric researchers’ understanding of how social relationships and environments impact health outcomes. Future research should consider using dyadic data analysis when youth and caregiver data are available. PMID:22523403

  19. The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life.

    Science.gov (United States)

    Martz, Kim; Morse, Janice M

    2017-06-01

    Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled "The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life" was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process. Findings indicated that guilt surrounding transfers escalated during the initial stages of the transfer but was mitigated by achieving what family members deemed as a "good" death when relatives were receiving hospice care. The findings of this interpretative approach provide new insights into family-focused perspectives in care transfers of the dying.

  20. Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe)

    Science.gov (United States)

    Aymerich, Marta; Guillamón, Imma; Jovell, Albert J

    2009-01-01

    Objectives: To measure the health-related quality of life (HRQoL) of multiple sclerosis (MS) patients and their caregivers, and to assess which factors can best describe HRQoL. Methods: A cross-sectional multicenter study of nine hospitals enrolled MS patients and their caregivers who attended outpatient clinics consecutively. The instruments used were the SF-36 for patients and the SF-12 and GHQ-12 for caregivers. Classification and regression tree analysis was used to analyze the explanatory factors of HRQoL. Results: A total of 705 patients (mean age 40.4 years, median Expanded Disability Status Scale 2.5, 77.8% with relapsing-remitting MS) and 551 caregivers (mean age 45.4 years) participated in the study. MS patients had significantly lower HRQoL than in the general population (physical SF-36: 39.9; 95% confidence interval [CI]: 39.1–40.6; mental SF-36: 44.4; 95% CI: 43.5–45.3). Caregivers also presented lower HRQoL than general population, especially in its mental domain (mental SF-12: 46.4; 95% CI: 45.5–47.3). Moreover, according to GHQ-12, 27% of caregivers presented probable psychological distress. Disability and co-morbidity in patients, and co-morbidity and employment status in caregivers, were the most important explanatory factors of their HRQoL. Conclusions: Not only the HRQoL of patients with MS, but also that of their caregivers, is indeed notably affected. Caregivers’ HRQoL is close to population of chronic illness even that the patients sample has a mild clinical severity and that caregiving role is a usual task in the study context. PMID:19936174

  1. Correlates of caregiver burden among family caregivers of older Korean Americans.

    Science.gov (United States)

    Casado, Banghwa; Sacco, Paul

    2012-05-01

    Despite the rapid growth of older ethnic minority populations, knowledge is limited about informal caregiving among these groups. Our aim was to identify correlates of caregiver burden among family caregivers of older Korean Americans (KAs). A cross-sectional survey collected data from 146 KA caregivers. Using a modified stress-appraisal model, we examined background and context characteristics (caregiver sex, relationship to care recipient, college education, English proficiency, time in caregiving role, family support network, friend support network), a primary stressor (care recipient functional dependency), a primary appraisal (caregiving hours), and resources (family agreement, care management self-efficacy, service use self-efficacy) as potential correlates of caregiver burden. Interactions between the primary stressor, primary appraisal, and resources were also tested. Being female and the care recipient's spouse were associated with higher burden. Conversely, a larger family support network, greater family agreement, and greater care management self-efficacy were associated with lower burden. A significant interaction was detected between functional dependency and family agreement; higher levels of family agreement moderated the association between care recipient functional dependency and caregiver burden. Interventions to reduce caregiver burden in KA caregivers may be more effective if they include approaches specifically designed to build family support, improve family agreement, and increase caregivers' self-efficacy.

  2. Psychological distress and quality of life in lung cancer: the role of health-related stigma, illness appraisals and social constraints.

    Science.gov (United States)

    Chambers, Suzanne K; Baade, Peter; Youl, Philippa; Aitken, Joanne; Occhipinti, Stefano; Vinod, Shalini; Valery, Patricia C; Garvey, Gail; Fong, Kwun M; Ball, David; Zorbas, Helen; Dunn, Jeff; O'Connell, Dianne L

    2015-11-01

    Health-related stigma is associated with negative psychological and quality of life outcomes in lung cancer patients. This study describes the impact of stigma on lung cancer patients' psychological distress and quality of life and explores the role of social constraints and illness appraisal as mediators of effect. A self-administered cross-sectional survey examined psychological distress and quality of life in 151 people (59% response rate) diagnosed with lung cancer from Queensland and New South Wales. Health-related stigma, social constraints and illness appraisals were assessed as predictors of adjustment outcomes. Forty-nine percent of patients reported elevated anxiety; 41% were depressed; and 51% had high global distress. Health-related stigma was significantly related to global psychological distress and quality of life with greater stigma and shame related to poorer outcomes. These effects were mediated by illness appraisals and social constraints. Health-related stigma appears to contribute to poorer adjustment by constraining interpersonal discussions about cancer and heightening feelings of threat. There is a need for the development and evaluation of interventions to ameliorate the negative effects of health-related stigma among lung cancer patients. © 2015 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.

  3. Psychological distress and quality of life in lung cancer: the role of health‐related stigma, illness appraisals and social constraints

    Science.gov (United States)

    Baade, Peter; Youl, Philippa; Aitken, Joanne; Occhipinti, Stefano; Vinod, Shalini; Valery, Patricia C.; Garvey, Gail; Fong, Kwun M.; Ball, David; Zorbas, Helen; Dunn, Jeff; O'Connell, Dianne L.

    2015-01-01

    Abstract Objective Health‐related stigma is associated with negative psychological and quality of life outcomes in lung cancer patients. This study describes the impact of stigma on lung cancer patients' psychological distress and quality of life and explores the role of social constraints and illness appraisal as mediators of effect. Methods A self‐administered cross‐sectional survey examined psychological distress and quality of life in 151 people (59% response rate) diagnosed with lung cancer from Queensland and New South Wales. Health‐related stigma, social constraints and illness appraisals were assessed as predictors of adjustment outcomes. Results Forty‐nine percent of patients reported elevated anxiety; 41% were depressed; and 51% had high global distress. Health‐related stigma was significantly related to global psychological distress and quality of life with greater stigma and shame related to poorer outcomes. These effects were mediated by illness appraisals and social constraints. Conclusions Health‐related stigma appears to contribute to poorer adjustment by constraining interpersonal discussions about cancer and heightening feelings of threat. There is a need for the development and evaluation of interventions to ameliorate the negative effects of health‐related stigma among lung cancer patients. © 2015 The Authors. Psycho‐Oncology Published by John Wiley & Sons Ltd. PMID:25920906

  4. Motor performance in Prader-Willi syndrome patients and its potential influence on caregiver's quality of life.

    Science.gov (United States)

    Chiu, Valeria Jia-Yi; Tsai, Li-Ping; Wei, Jang-Ting; Tzeng, I-Shiang; Wu, Hsin-Chi

    2017-01-01

    Prader-Willi syndrome (PWS) is a complex, multisystem genetic disorder characterized by a variety of physical, cognitive, and behavioral impairments. PWS is a unique sarcopenia model characterized by an abnormal increase in body fat mass and a decrease in muscle mass that predisposes patients to reduced physical activity, functional limitations, and disability. These manifestations may require both symptomatic and supportive management, thus negatively influencing their lifelong family caregiver's quality of life. The aim of this study was to examine the functional motor performance of adults with PWS in Taiwan and to measure the quality of life of their primary family caregivers. The functional motor tests consisted of the following: (1) 30-s sit-to-stand test, (2) timed up-and-go test, (3) hand grip and lateral pinch strength tests, and (4) Berg Balance Scale. The World Health Organization Quality of Life-short form (WHOQOL-BREF) and the Short-Form 36 Health Survey Questionnaire (SF-36) were used to evaluate health-related quality of life, and the parenting stress index was used to assess the magnitude of stress within the parent-child system. The participants included seven adults (two females and five males) with genetically confirmed PWS and their respective main caregivers. The mean age of the adults with PWS was 25.28 years; range 18-31 years, SD 5.10; the mean BMI was 29.2 kg/m 2 , SD 6.43. All adults with PWS showed lower hand grip and lateral pinch strengths, fewer sit-to-stand cycles during the 30-s chair stand test, and greater average time during the timed up-and-go test when compared to the normative data on healthy adults. Balance was negatively correlated with the caregiver's health concepts of social functioning ( r s -0.879, P  = 0.009) and with role limitations due to physical problems ( r s -0.899, P  = 0.006) and emotional problems ( r s -0.794, P  = 0.033); hand grip strength was negatively correlated with bodily pain ( r s -0.800, P

  5. The impact of individual Cognitive Stimulation Therapy (iCST on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial.

    Directory of Open Access Journals (Sweden)

    Martin Orrell

    2017-03-01

    Full Text Available Cognitive stimulation therapy (CST is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST program in (i improving cognition and quality of life (QoL for the person with dementia and (ii mental and physical health (well-being for the caregiver.A single-blind, pragmatic randomised controlled trial (RCT was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants' homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs. Participants were randomly assigned to iCST (75, 30-min sessions or treatment as usual (TAU control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer's Disease Assessment Scale-cognitive [ADAS-Cog] and self-reported QoL (Quality of Life Alzheimer's Disease [QoL-AD] for the person with dementia and general health status (Short Form-12 health survey [SF-12] for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale and health-related QoL (European Quality of Life-5 Dimensions [EQ-5D] for the caregiver. Intention to treat (ITT analyses were conducted. At the post-test (26 wk, there were no differences between the iCST and TAU groups in the outcomes of cognition (mean

  6. Personality, immune response and reproductive success: an appraisal of the pace-of-life syndrome hypothesis.

    Science.gov (United States)

    Monceau, Karine; Dechaume-Moncharmont, François-Xavier; Moreau, Jérôme; Lucas, Camille; Capoduro, Rémi; Motreuil, Sébastien; Moret, Yannick

    2017-07-01

    The pace-of-life syndrome (POLS) hypothesis is an extended concept of the life-history theory that includes behavioural traits. The studies challenging the POLS hypothesis often focus on the relationships between a single personality trait and a physiological and/or life-history trait. While pathogens represent a major selective pressure, few studies have been interested in testing relationships between behavioural syndrome, and several fitness components including immunity. The aim of this study was to address this question in the mealworm beetle, Tenebrio molitor, a model species in immunity studies. The personality score was estimated from a multidimensional syndrome based of four repeatable behavioural traits. In a first experiment, we investigated its relationship with two measures of fitness (reproduction and survival) and three components of the innate immunity (haemocyte concentration, and levels of activity of the phenoloxidase including the total proenzyme and the naturally activated one) to challenge the POLS hypothesis in T. molitor. Overall, we found a relationship between behavioural syndrome and reproductive success in this species, thus supporting the POLS hypothesis. We also showed a sex-specific relationship between behavioural syndrome and basal immune parameters. In a second experiment, we tested whether this observed relationship with innate immunity could be confirmed in term of differential survival after challenging by entomopathogenic bacteria, Bacillus thuringiensis. In this case, no significant relationship was evidenced. We recommend that future researchers on the POLS should control for differences in evolutionary trajectory between sexes and to pay attention to the choice of the proxy used, especially when looking at immune traits. © 2017 The Authors. Journal of Animal Ecology © 2017 British Ecological Society.

  7. Factors associated with quality of life of outpatients with breast cancer and gynecologic cancers and their family caregivers: a controlled study

    Directory of Open Access Journals (Sweden)

    Hamad Hussein MA

    2007-06-01

    Full Text Available Abstract Background Quality of life (QOL issues are of interest in cancer because effective methods of treatment and detection have led to an increase in the number of long-term survivors. The objectives of the study were: to assess the subjective QOL of stable Sudanese women cancer outpatients and their family caregivers, using the WHO 26-item QOL Instrument; compare with matched general population groups, as well as diabetic and psychiatric patient groups; examine patient-caregiver concordance in ratings; and assess the variables associated with their QOL, with a view to identifying factors that can enhance quality of care. Methods Responses of oncology outpatients with breast cancer (117, cervical cancer (46 and ovarian cancer (18 (aged 44.6, SD 11.5 were compared with those of their family caregivers and matched general population groups. Data were analyzed by univariate and multivariate statistics. Results The cancer groups had similar QOL domain scores, which were significantly lower than those of their caregivers, but higher than the control group as well as those of psychiatric and diabetic patients studied previously. Patients who were married, with higher education, better employment, and with longer duration of illness had higher QOL. Patients on radiotherapy and their caregivers had higher QOL scores. Correlations between patient's ratings and caregiver impression of patient's QOL were high. Caregiver impression was a significant predictor of patient's and caregiver's QOL. Other predictors for the patient were: currently feeling sick and duration of illness; for the caregiver: feeling sick, relationship to patient, and age. Conclusion Cancer patients in stable condition and with psychosocial support can hope to enjoy good QOL with treatment. The findings constitute an evidence base for the country's cancer care program, to boost national health education about prognosis in cancer. Families living with women cancer patients are

  8. Caregiver Depression

    Science.gov (United States)

    ... will not sell or share your name. Caregiver Depression Tweet Bookmark this page | Email | Print Many caregivers ... depression See your doctor Treatment Coping Symptoms of depression Caregiving is hard — and can lead to feelings ...

  9. Adjustment to Acute Leukemia: The Impact of Social Support and Marital Satisfaction on Distress and Quality of Life Among Newly Diagnosed Patients and Their Caregivers.

    Science.gov (United States)

    Pailler, Megan E; Johnson, Teresa M; Kuszczak, Sarah; Attwood, Kristopher M; Zevon, Michael A; Griffiths, Elizabeth; Thompson, James; Wang, Eunice S; Wetzler, Meir

    2016-09-01

    Little is known about the specific patterns of adjustment among newly diagnosed acute leukemia patients and their caregivers. This study examined the trajectories of patient and caregiver distress over time as well as the extent to which marital satisfaction and social support moderated these trajectories among those with significant-other caregivers. Forty six patient-caregiver dyads provided ratings at four time points: within 1 week of diagnosis (T1), 2 week follow-up (T2), 6 week follow-up (T3) and 12 week follow-up (T4). As anticipated, patients and caregivers reported higher levels of distress around the time of diagnosis than they did during subsequent time points. Marital satisfaction was a significant predictor of distress among patients, whereas among caregivers, social support predicted distress and quality of life. Results support the inclusion of relational variables such as social support and relationship satisfaction in the assessment of newly diagnosed patients and families in order to best identify those at risk for distress over time.

  10. Experiences of long-term home care as an informal caregiver to a spouse: gendered meanings in everyday life for female carers.

    Science.gov (United States)

    Eriksson, Henrik; Sandberg, Jonas; Hellström, Ingrid

    2013-05-01

    In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia. One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective. Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective. The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed. Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns. Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers. © 2012 Blackwell

  11. Appraisal Report

    DEFF Research Database (Denmark)

    Schleimann, Finn; Enemark, Ulrika; Vagnby, Bo Hellisen

    Appraisal of continued support to Ghana's health sector for a third phase covering 2003 - 2007. Funding recommended with DKK 340 million over five years.......Appraisal of continued support to Ghana's health sector for a third phase covering 2003 - 2007. Funding recommended with DKK 340 million over five years....

  12. A scientific appraisal on hirudotherapy- an evolution in life style disorders

    Directory of Open Access Journals (Sweden)

    Shikha Nayak

    2015-11-01

    Full Text Available Introduction: Hirudotherapy is a treatment with using of medicinal leech. This kind of therapy is known from the time of extreme antiquity and is still alive nowadays.Aims: At the present era when the world is suffering from a number of disorders occurring due to faulty Life style, Hirudotherapy is an evolutionary mode of treatment. Scientifically it has been proved that Substances in Leech saliva can lower the blood sugar levels and improve pancreatic functions, so can use in diabetes and its complications. Scientific research of Hirudo Medicinalis by number of powerful enzymes extracted from leeches salivary gland secretions among them DESTABILASE which in nature can be found only in leeches. This also explains the Atherogenic Effect provided by the leeches, for they lower the level of Cholesterol and Triglycerides in blood.Conclusion:  As Leech Therapy is being used frequently in a number of disorders, the evidence based concept is the need of the hour. The present paper portrays the scientific substantiation of Hirudotherapy.

  13. A quality study of family-centered care coordination to improve care for children undergoing tracheostomy and the quality of life for their caregivers.

    Science.gov (United States)

    Hartnick, Christopher; Diercks, Gillian; De Guzman, Vanessa; Hartnick, Elizabeth; Van Cleave, Jeanne; Callans, Kevin

    2017-08-01

    Approximately 4000 U.S. children undergo tracheostomy yearly [1], and these surgeries often result in hospital re-admissions that have definite cost and caregiver burdens due to complications that are avoidable with proper training and support. To assess the impact of a Family-Centered Care Coordination (FCCC) program on the quality of care received by children undergoing tracheostomy and their caregivers. Caregivers of children undergoing tracheostomies from January 2012 to January 2013 and then a different set of caregivers of children undergoing tracheostomies from January 2015 to January 2016 completed both the Pediatric Tracheostomy Health Status Instrument (PTHSI) 1 month after discharge and the Medical Complications Associated with Pediatric Tracheostomy (MCAT) questionnaire 6 months after initial tracheostomy. To assess complication rates, these same sets of caregivers were asked to complete the MCAT and only those who provided complete medical data for all 6 months were included for comparative analysis. The PTHSI and MCAT were administered at Massachusetts Eye and Ear in a hospital setting. Ten caregivers of children undergoing tracheostomies completed the PTHSI before FCCC program implementation and12 caregivers then completed the PTHSI after FCCC implementation. For each of the 2 groups, 5 caregivers provided complete data on the MCAT questionnaires. FCCC is a collection of programs, policies, and tools designed to ensure safe transition home for children undergoing tracheostomies, reduce re-admission rates, and minimize "caregiver burden". The PTHSI is a validated caregiver quality of life instrument that was supplemented by the MCAT which records post-discharge medical issues following tracheostomy that relate specifically to the tracheotomy placement. The time to first follow-up appointment decreased from 6.4 weeks (SD = 1.52) to 6 days (SD = 0.18) with FCCC implementation. The total MCAT scores decreased from 15.2 (SD = 1.1) to 1.3 (SD = 1

  14. Canada's Compassionate Care Benefit: is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

    Science.gov (United States)

    Williams, Allison M; Eby, Jeanette A; Crooks, Valorie A; Stajduhar, Kelli; Giesbrecht, Melissa; Vuksan, Mirjana; Cohen, S Robin; Brazil, Kevin; Allan, Diane

    2011-05-18

    An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB)--a contributory benefits social program aimed at informal P/EOL caregivers--operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model. As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework. Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants. This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the

  15. Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe

    Directory of Open Access Journals (Sweden)

    Marta Aymerich

    2009-10-01

    Full Text Available Marta Aymerich1, Imma Guillamón2, Albert J Jovell3,41Medical Sciences Department, University of Girona, Catalonia, Spain; 2Catalan Agency for Health Technology Assessment and Research, Barcelona, Catalonia, Spain; 3Fundació Biblioteca Josep Laporte, Barcelona, Catalonia, Spain; 4Autonomous University of Barcelona, Catalonia, SpainObjectives: To measure the health-related quality of life (HRQoL of multiple sclerosis (MS patients and their caregivers, and to assess which factors can best describe HRQoL.Methods: A cross-sectional multicenter study of nine hospitals enrolled MS patients and their caregivers who attended outpatient clinics consecutively. The instruments used were the SF-36 for patients and the SF-12 and GHQ-12 for caregivers. Classification and regression tree analysis was used to analyze the explanatory factors of HRQoL.Results: A total of 705 patients (mean age 40.4 years, median Expanded Disability Status Scale 2.5, 77.8% with relapsing-remitting MS and 551 caregivers (mean age 45.4 years participated in the study. MS patients had significantly lower HRQoL than in the general population (physical SF-36: 39.9; 95% confidence interval [CI]: 39.1–40.6; mental SF-36: 44.4; 95% CI: 43.5–45.3. Caregivers also presented lower HRQoL than general population, especially in its mental domain (mental SF-12: 46.4; 95% CI: 45.5–47.3. Moreover, according to GHQ-12, 27% of caregivers presented probable psychological distress. Disability and co-morbidity in patients, and co-morbidity and employment status in caregivers, were the most important explanatory factors of their HRQoL.Conclusions: Not only the HRQoL of patients with MS, but also that of their caregivers, is indeed notably affected. Caregivers’ HRQoL is close to population of chronic illness even that the patients sample has a mild clinical severity and that caregiving role is a usual task in the study context.Keywords: health-related quality of life, multiple sclerosis

  16. Measuring quality of life of people with predementia and dementia and their caregivers: a systematic review protocol

    Science.gov (United States)

    Landeiro, Filipa; Walsh, Katie; Ghinai, Isaac; Mughal, Seher; Nye, Elsbeth; Wace, Helena; Roberts, Nia; Lecomte, Pascal; Wittenberg, Raphael; Wolstenholme, Jane; Handels, Ron; Roncancio-Diaz, Emilse; Potashman, Michele H; Tockhorn-Heidenreich, Antje

    2018-01-01

    Introduction Dementia is the fastest growing major cause of disability globally and may have a profound impact on the health-related quality of life (HRQoL) of both the patient with dementia and those who care for them. This review aims to systematically identify and synthesise the measurements of HRQoL for people with, and their caregivers across the full spectrum of, dementia from its preceding stage of predementia to end of life. Methods and analysis A systematic literature review was conducted in Medical Literature Analysis and Retrieval System Online, ExcerptaMedicadataBASE, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effect, National Health Service Economic Evaluation Database and PsycINFO between January 1990 and the end of April 2017. Two reviewers will independently assess each study for inclusion and disagreements will be resolved by a third reviewer. Data will be extracted using a predefined data extraction form following best practice. Study quality will be assessed with the Effective Public Health Practice Project quality assessment tool. HRQoL measurements will be presented separately for people with dementia and caregivers by instrument used and, when possible, HRQoL will be reported by disease type and stage of the disease. Descriptive statistics of the results will be provided. A narrative synthesis of studies will also be provided discussing differences in HRQoL measurements by instrument used to estimate it, type of dementia and disease severity. Ethics and dissemination This systematic literature review is exempt from ethics approval because the work is carried out on published documents. The findings of the review will be disseminated in a related peer-reviewed journal and presented at conferences. They will also contribute to the work developed in the Real World Outcomes across the Alzheimer’s disease spectrum for better care: multimodal data access platform

  17. The Effects of a Family Support Program Including Respite Care on Parenting Stress and Family Quality of Life Perceived by Primary Caregivers of Children with Disabilities in Korea

    Science.gov (United States)

    Sung, Minjung; Park, Jiyeon

    2012-01-01

    In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were…

  18. The contributions of family care-givers at end of life : A national post-bereavement census survey of cancer carers' hours of care and expenditures

    NARCIS (Netherlands)

    Rowland, Christine; Hanratty, Barbara; Pilling, Mark; van den Berg, Bernard; Grande, Gunn

    Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients' preferences and government policy. However, the value of care-givers' contributions is often underestimated or

  19. The effectiveness of creating an online life story book on persons with early dementia and their informal caregivers : a protocol of a randomized controlled trial

    NARCIS (Netherlands)

    Elfrink, Teuntje R.; Zuidema, Sytse U.; Kunz, Miriam; Westerhof, Gerben J.

    2017-01-01

    Background: Dementia has a high burden for patients, informal caregivers and society. Given changes in care systems, more persons with dementia will live longer at home. However, living at home (with dementia) with a good quality of life is not easy to achieve. Dementia is often accompanied by

  20. The effectiveness of creating an online life story book on persons with early dementia and their informal caregivers : A protocol of a randomized controlled trial

    NARCIS (Netherlands)

    Elfrink, Teuntje R.; Zuidema, Sytse U.; Kunz, Miriam; Westerhof, Gerben J.

    2017-01-01

    Background: Dementia has a high burden for patients, informal caregivers and society. Given changes in care systems, more persons with dementia will live longer at home. However, living at home (with dementia) with a good quality of life is not easy to achieve. Dementia is often accompanied by

  1. The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial

    Science.gov (United States)

    Leung, Phuong; Whitaker, Chris; Burns, Alistair; Knapp, Martin; Leroi, Iracema; Spector, Aimee; Roberts, Steven; de Waal, Hugo; Orgeta, Vasiliki

    2017-01-01

    Background Cognitive stimulation therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (well-being) for the caregiver. Methods and findings A single-blind, pragmatic randomised controlled trial (RCT) was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants’ homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs). Participants were randomly assigned to iCST (75, 30-min sessions) or treatment as usual (TAU) control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer’s Disease Assessment Scale–cognitive [ADAS-Cog]) and self-reported QoL (Quality of Life Alzheimer’s Disease [QoL-AD]) for the person with dementia and general health status (Short Form-12 health survey [SF-12]) for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale) and health-related QoL (European Quality of Life–5 Dimensions [EQ-5D]) for the caregiver. Intention to treat (ITT) analyses were conducted. At the post-test (26 wk), there were no differences between the iCST and TAU groups

  2. Quality of life domains important and relevant to family caregivers of advanced cancer patients in an Asian population: a qualitative study.

    Science.gov (United States)

    Lee, Geok Ling; Ow, Mandy Yen Ling; Akhileswaran, Ramaswamy; Pang, Grace Su Yin; Fan, Gilbert Kam Tong; Goh, Brandon Huat Heng; Wong, Cai Fong; Cheung, Yin Bun; Wee, Hwee Lin

    2015-04-01

    This study aims to identify domains of quality of life (QoL) that are culturally relevant to Chinese caregivers of advanced cancer patients in Singapore and to evaluate content adequacy of currently available instruments for use in the target population. English- and Chinese-speaking caregivers of advanced cancer patients receiving care under a tertiary cancer center and/or a community hospice home care/day care provider were recruited for in-depth interviews. The interviews were analyzed using thematic analysis. The identified domains, themes and sub-themes were compared to concepts addressed by items from five existing cancer-specific caregiver QoL instruments. Eighteen female and eight male caregivers aged 28-74 years participated in the study. Twenty-nine QoL themes and 59 sub-themes were identified in six domains, namely physical health, mental health, social health, spiritual health, financial health and daily life. Collectively, but not individually, the content of the five existing instruments adequately cover the physical health domain, social health domain and some themes on mental health domain for the study population. Content gaps were identified in the domains of mental health, spiritual health, daily life and financial health. The present study found culturally and contextually specific themes and sub-themes about positive emotional health, spiritual health and financial health.

  3. Engaging patients and caregivers in prioritizing symptoms impacting quality of life for Duchenne and Becker muscular dystrophy.

    Science.gov (United States)

    Hollin, Ilene L; Peay, Holly; Fischer, Ryan; Janssen, Ellen M; Bridges, John F P

    2018-05-26

    Patient preference information (PPI) have an increasing role in regulatory decision-making, especially in benefit-risk assessment. PPI can also facilitate prioritization of symptoms to treat and inform meaningful selection of clinical trial endpoints. We engaged patients and caregivers to prioritize symptoms of Duchenne and Becker muscular dystrophy (DBMD) and explored preference heterogeneity. Best-worst scaling (object case) was used to assess priorities across 11 symptoms of DBMD that impact quality of life and for which there is unmet need. Respondents selected the most and least important symptoms to treat among a subset of five. Relative importance scores were estimated for each symptom, and preference heterogeneity was identified using mixed logit and latent class analysis. Respondents included patients (n = 59) and caregivers (n = 96) affected by DBMD. Results indicated that respondents prioritized "weaker heart pumping" [score = 5.13; 95% CI (4.67, 5.59)] and pulmonary symptoms: "lung infections" [3.15; (2.80, 3.50)] and "weaker ability to cough" [2.65; (2.33, 2.97)] as the most important symptoms to treat and "poor attention span" as the least important symptom to treat [- 5.23; (- 5.93, - 4.54)]. Statistically significant preference heterogeneity existed (p value dystrophy indicated that symptoms with direct links to morbidity and mortality were prioritized above other non-skeletal muscle symptoms. Findings suggested the existence of preference heterogeneity for symptoms, which may be related to symptom experience.

  4. Cuidando de quem cuida: avaliando a qualidade de vida de cuidadores de afásicos Taking care of the caregiver: valuing of the quality of life of the aphasics caregivers

    Directory of Open Access Journals (Sweden)

    Ivone Panhoca

    2010-04-01

    Full Text Available OBJETIVO: avaliar a qualidade de vida de cuidadores de afásicos, utilizando-se o "Questionário de sobrecarga do cuidador (Burden Interview - Zarit". MÉTODOS: responderam as 22 questões do questionário, 30 cuidadores de afásicos, de ambos os sexos, que eram atendidos em uma clínica-escola de uma faculdade de Fonoaudiologia do interior do estado de São Paulo. Além disso, foram coletados os seguintes dados: sexo; idade; nível de escolaridade; há quanto tempo ocupava a posição de cuidador; grau de parentesco com o afásico; quais suas maiores dificuldades no trato com o afásico; tipo de afasia da pessoa sob seus cuidados (e acometimentos associados. Foram analisadas tais variáveis a fim de verificar como elas influenciavam na sobrecarga e, além disso, verificou-se a relação entre a pontuação geral do questionário e a questão em que o próprio cuidador respondia como avaliava sua sobrecarga como cuidador. RESULTADOS: constatou-se que as variáveis "parentesco" e "dificuldades no trato com o afásico" estão relacionadas com a sobrecarga do cuidador, sendo que as maiores sobrecargas foram encontradas nos que cuidam de afásicos que apresentam maiores comprometimentos linguísticos e que se irritam facilmente quando não são compreendidos. Quanto ao grau de parentesco os pais de afásicos são os que se sentem mais sobrecarregados, seguidos pelos cônjuges, filhos e irmãos. CONCLUSÃO: os resultados encontrados mostraram que o cuidador do afásico apresenta sobrecarga física e emocional, sendo de extrema importância conhecer suas necessidades, para melhor assisti-los e orientá-los, buscando minimizar a sobrecarga e melhorando a qualidade de vida.PURPOSE: to value aphasics' caregivers quality of life using the "Caregiver Burden Questionnaire (Burden Interview - Zarit". METHODS: thirty aphasics' caregivers, of both genders, answered twentytwo questions of the questionnaire, and were attended in a clinic-school at a Speech

  5. Burden Experienced by Family Caregivers of Patients at the End of Life: What do General Practice Teams Offer?

    Science.gov (United States)

    Krug, K; Bölter, R; Ballhausen, R A; Engeser, P; Peters-Klimm, F

    2016-09-01

    The aim of the study: was to determine how far general practice teams are prepared to relieve family caregivers of palliative patients from their caregiving burden, the support they actually offer, and where they identify needs for improvement. Method: Focus groups and interviews on the issues of identification and support of family caregivers were conducted with practice teams (general practitioners, GPs, and medical assistants, MAs) and the results qualitatively analyzed. Results: 21 participants (14 GPs, 7 MAs) from 13 practices identified burdened family caregivers, thereupon offered support and provided contact details to local consultation services. They suggested to family caregivers that they should use their social network to create room for meeting their own needs. Conclusions: Practice teams use a multitude of individualized and unsystematic approaches to support family caregivers. In further studies within the framework of this project, systematic approaches will be identified and tried out. © Georg Thieme Verlag KG Stuttgart · New York.

  6. Communicatively Constructing the Bright and Dark Sides of Hope: Family Caregivers? Experiences during End of Life Cancer Care

    OpenAIRE

    Koenig Kellas, Jody; Castle, Katherine M.; Johnson, Alexis; Cohen, Marlene Z.

    2017-01-01

    (1) Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines the bright and dark sides of how hope is communicated across the cancer journey from the vantage point of bereaved family caregivers; (2) Methods: We analyzed interviews with bereaved family caregivers using qualita...

  7. Sociodemographic Factors and Health-Related Characteristics That Influence the Quality of Life of Grandparent Caregivers in Zimbabwe

    Directory of Open Access Journals (Sweden)

    Magen Mhaka-Mutepfa PhD

    2018-02-01

    Full Text Available Very few studies have examined quality of life (QOL in elderly carers of orphaned children in African settings. This study explored sociodemographic factors and health-related characteristics that influence QOL of grandparent carers in Zimbabwe. A cross-sectional study stratified by district was done to collect information on socioeconomic factors, health-related characteristics, and QOL of grandparent carers ( N = 327; age: M = 62.4, SD = 11.2. Data were collected on socioeconomic factors, self-perceived health, health care access, chronic disease condition, health insurance status, types of health care services, and medications taken using the World Health Organization Quality of Life Questionnaire (WHOQOL-BREF. Bivariate and multivariate analyses were used to investigate the associations between QOL and the predictor variables. Caregivers’ level of education (odds ratio [OR] = 3.0; confidence interval [95% CI] = [1.0, 27], fostering orphans only (OR = 0.4; 95% CI = [0.2, 0.7], self-perceived health (OR = 10.2; 95% CI = [4.5, 25], medical insurance (OR = 9.8; 95% CI = [1.9, 54], and satisfaction with health care services (OR = 2.2; 95% CI = [1.2, 4.4] were associated with QOL, after adjusting for all influencing factors. The results confirm that QOL is compromised by specific demographic and self-rated health characteristics. Thus, eradicating poverty and providing services and changing caregiver’s perceptions about self-rated health may enhance QOL among grandparent caregivers.

  8. Effectiveness of two home ergonomic programs in reducing pain and enhancing quality of life in informal caregivers of post-stroke patients: A pilot randomized controlled clinical trial.

    Science.gov (United States)

    de Araújo Freitas Moreira, Karen Lucia; Ábalos-Medina, Gracia María; Villaverde-Gutiérrez, Carmen; Gomes de Lucena, Neide María; Belmont Correia de Oliveira, Anderson; Pérez-Mármol, José Manuel

    2018-02-13

    Informal caregivers of post-stroke patients usually undergo high levels of pain and stress and have a reduced quality of life. To evaluate the effectiveness of two home ergonomic interventions aimed at reducing pain intensity and perceived stress and enhancing the quality of life in informal caregivers of chronic post-stroke patients. A randomized single-blind controlled clinical trial was conducted, with a sample of 33 informal caregivers of patients with stroke. Three groups were included: one received postural hygiene training and kinesiotherapy, for 12 weeks, two days a week, one hour per session; another received adaptation of the home environment, and the third was a control group. Pain intensity, stress level and general quality of life were evaluated at three-time points: pre-intervention, post-intervention, and after a follow-up period of three months. Neck pain decreased in the two experimental groups, and increased in the control group. Pain in the shoulders and knees was alleviated in the group that received postural hygiene and kinesiotherapy. In addition, regarding quality of life, this group obtained an improvement in the physical health dimension, while the home adaptation group reported improved social relationships. These results suggest that 12 weeks of training in postural hygiene, combined with kinesiotherapy, and home adaptations can reduce pain and improve several aspects of the quality of life of this population. CLINICALTRIALS. NCT03284580. Copyright © 2018 Elsevier Inc. All rights reserved.

  9. Effect of Face-to-face Education, Problem-based Learning, and Goldstein Systematic Training Model on Quality of Life and Fatigue among Caregivers of Patients with Diabetes.

    Science.gov (United States)

    Masoudi, Reza; Soleimani, Mohammad Ali; Yaghoobzadeh, Ameneh; Baraz, Shahram; Hakim, Ashrafalsadat; Chan, Yiong H

    2017-01-01

    Education is a fundamental component for patients with diabetes to achieve good glycemic control. In addition, selecting the appropriate method of education is one of the most effective factors in the quality of life. The present study aimed to evaluate the effect of face-to-face education, problem-based learning, and Goldstein systematic training model on the quality of life (QOL) and fatigue among caregivers of patients with diabetes. This randomized clinical trial was conducted in Hajar Hospital (Shahrekord, Iran) in 2012. The study subjects consisted of 105 family caregivers of patients with diabetes. The participants were randomly assigned to three intervention groups (35 caregivers in each group). For each group, 5-h training sessions were held separately. QOL and fatigue were evaluated immediately before and after the intervention, and after 1, 2, 3, and 4 months of intervention. There was a significant increase in QOL for all the three groups. Both the problem-based learning and the Goldstein method showed desirable QOL improvement over time. The desired educational intervention for fatigue reduction during the 4-month post-intervention period was the Goldstein method. A significant reduction was observed in fatigue in all three groups after the intervention ( P problem-based learning and Goldstein systematic training model improve the QOL of caregivers of patients with diabetes. In addition, the Goldstein systematic training model had the greatest effect on the reduction of fatigue within 4 months of the intervention.

  10. Measuring quality of life of people with predementia and dementia and their caregivers: a systematic review protocol.

    Science.gov (United States)

    Landeiro, Filipa; Walsh, Katie; Ghinai, Isaac; Mughal, Seher; Nye, Elsbeth; Wace, Helena; Roberts, Nia; Lecomte, Pascal; Wittenberg, Raphael; Wolstenholme, Jane; Handels, Ron; Roncancio-Diaz, Emilse; Potashman, Michele H; Tockhorn-Heidenreich, Antje; Gray, Alastair M

    2018-03-30

    Dementia is the fastest growing major cause of disability globally and may have a profound impact on the health-related quality of life (HRQoL) of both the patient with dementia and those who care for them. This review aims to systematically identify and synthesise the measurements of HRQoL for people with, and their caregivers across the full spectrum of, dementia from its preceding stage of predementia to end of life. A systematic literature review was conducted in Medical Literature Analysis and Retrieval System Online , ExcerptaMedicadataBASE, Cochrane Database of Systematic Reviews , Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effect, National Health Service Economic Evaluation Database and PsycINFO between January 1990 and the end of April 2017. Two reviewers will independently assess each study for inclusion and disagreements will be resolved by a third reviewer. Data will be extracted using a predefined data extraction form following best practice. Study quality will be assessed with the Effective Public Health Practice Project quality assessment tool. HRQoL measurements will be presented separately for people with dementia and caregivers by instrument used and, when possible, HRQoL will be reported by disease type and stage of the disease. Descriptive statistics of the results will be provided. A narrative synthesis of studies will also be provided discussing differences in HRQoL measurements by instrument used to estimate it, type of dementia and disease severity. This systematic literature review is exempt from ethics approval because the work is carried out on published documents. The findings of the review will be disseminated in a related peer-reviewed journal and presented at conferences. They will also contribute to the work developed in the Real World Outcomes across the Alzheimer's disease spectrum for better care: multimodal data access platform (ROADMAP). CRD42017071416. © Article author(s) (or their

  11. Quality of Life of Family Caregivers of Children with Autism: The Mother's Perspective

    Science.gov (United States)

    Shu, Bih-Ching

    2009-01-01

    The purpose of this study was to explore the relationship between the quality of life (QOL) and feeling of mothers of a child with autism. The QOL instrument was also used. A total of 104 participants completed all questionnaires, which included the Taiwan version of the WHOQOL-BREF. A final robust parsimonious structural model showed a positive…

  12. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients.

    Science.gov (United States)

    Ullrich, Anneke; Ascherfeld, Lilian; Marx, Gabriella; Bokemeyer, Carsten; Bergelt, Corinna; Oechsle, Karin

    2017-05-10

    This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient's admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for "bodily pain", FCs' quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80-83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3). This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs' satisfaction with SIPC seemed to be high. A current multicenter study evaluates these findings longitudinally in a large cohort of FCs.

  13. Depression, anxiety and quality of life in stroke survivors and their family caregivers: A pilot study using an actor/partner interdependence model

    Science.gov (United States)

    Wan-Fei, Khaw; Hassan, Syed Tajuddin Syed; Sann, Lye Munn; Ismail, Siti Irma Fadhilah; Raman, Rosna Abdul; Ibrahim, Faisal

    2017-01-01

    Background Depression and anxiety are common in stroke survivors as well as their family caregivers. However, it is not known whether each person’s emotional distress contributes to their partner’s quality of life (QOL). Objective This study aimed to examine the effect of depression and anxiety on QOL in stroke survivor-caregiver dyads using dyadic analysis technique - the Actor-Partner Interdependence Model (APIM). Methods This was a cross-sectional pilot study with a total of 30 participating dyads (30 stroke survivors and 30 family caregivers) from Hospital Rehabilitasi Cheras, Kuala Lumpur, Malaysia. This pilot study was conducted over a period of 3 months, between December 2014 and February 2015. Depression and anxiety were assessed using the Hospital Anxiety and Depression Scale (HADS). QOL was assessed using the Short Form-12 Health Survey (SF-12). All analyses were carried out using IBM SPSS version 22. Dyadic data were analysed using multilevel modelling (MLM). Results Depression was uniquely associated with an individual’s own QOL. Survivors and caregivers with higher depression had poorer physical component summary (PCS) scores and mental component summary (MCS) scores. Stroke survivor’s depression exerted a significant actor effect on their PCS (b=−1.42, p=0.001) and MCS (b=−1.52, pdepression exerted a significant actor effect on their PCS (b=−2.53, pdepression exerted a significant partner effect on PCS in stroke survivors (b=−1.19, p=0.003). Caregivers’ depression was also related to their stroke survivors’ poorer QOL, particularly PCS. Conclusion The findings suggest that depression affects the QOL of both stroke survivors and caregivers, not only emotionally but also physically. This dyadic study also has evidence pointing to depression in caregivers and its association with stroke survivors’ physical QOL. PMID:28979724

  14. Terminally Ill Taiwanese Cancer Patients' and Family Caregivers' Agreement on Patterns of Life-Sustaining Treatment Preferences Is Poor to Fair and Declines Over a Decade: Results From Two Independent Cross-Sectional Studies.

    Science.gov (United States)

    Liu, Tsang-Wu; Wen, Fur-Hsing; Wang, Cheng-Hsu; Hong, Ruey-Long; Chow, Jyh-Ming; Chen, Jen-Shi; Chiu, Chang-Fang; Tang, Siew Tzuh

    2017-07-01

    Temporal changes have not been examined in patient-caregiver agreement on life-sustaining treatment (LST) preferences at end of life (EOL). We explored the extent of and changes in patient-caregiver agreement on LST-preference patterns for two independent cohorts of Taiwanese cancer patient-family caregiver dyads recruited a decade apart. We surveyed preferences for cardiopulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, tube feeding, and dialysis among 1049 and 1901 dyads in 2003-2004 and 2011-2012, respectively. LST-preference patterns were examined by multi-group latent class analysis. Extent of patient-caregiver agreement on LST-preference patterns was determined by percentage agreement and kappa coefficients. For both patients and family caregivers, we identified seven distinct LST-preference classes. Patient-caregiver agreement on LST-preference patterns was poor to fair across both study cohorts, indicated by 24.4%-43.5% agreement and kappa values of 0.06 (95% CI: 0.04, 0.09) to 0.27 (0.23, 0.30), and declined significantly over time. Agreement on LST-preference patterns was most likely when both patients and caregivers uniformly rejected LSTs. When patients disagreed with caregivers on LST-preference patterns, discrepancies were most likely when patients totally rejected LSTs but caregivers uniformly preferred LSTs or preferred nutritional support but rejected other treatments. Patients and family caregivers had poor-to-fair agreement on LST-preference patterns, and agreement declined significantly over a decade. Encouraging an open dialogue between patients and their family caregivers about desired EOL care would facilitate patient-caregiver agreement on LST-preference patterns, thus honoring terminally ill cancer patients' wishes when they cannot make EOL-care decisions. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc

  15. Combining Employment and Caregiving: An Intricate Juggling Act.

    Science.gov (United States)

    Guberman, Nancy; Maheu, Pierre

    1999-01-01

    The process that allows family caregivers to combine employment and elder care was examined in interviews with 25 caregivers. The effects of elder care on employment are the result of the degree to which caregivers manage to maintain balance between different life spheres: personal and social life, family life, caregiving, and employment. (53…

  16. The relationship between family obligation and religiosity on caregiving.

    Science.gov (United States)

    Epps, Fayron

    2014-01-01

    The purpose of this study was to examine the relationship between family obligation and religiosity on the positive appraisal of caregiving among African-American, Hispanic and non-Hispanic Caucasian family caregivers of older adults. Roy's adaptation model guided formulation of the aims and study design. A cross-sectional, correlational study design was employed to examine the relationship amongst variables for the family caregiver participants. Study participants (N = 69) completed a demographic tool and four instruments the: (1) Katz index, (2) obligation scale, (3) Duke University religion index, and (4) positive appraisal of care scale. There was a significant correlation between family obligation and positive appraisal of caregiving. However, there was no relationship between the family caregiver's religiosity and positive appraisal of caregiving overall. Demographic variables were also examined to show a higher marginal mean for Hispanic primary caregivers in relation to the positive appraisal of caregiving. Future studies should consider replicating these findings in a larger sample to provide health care professionals with substantial evidence to incorporate culturally sensitive interventions aimed at promoting positive outcomes and healthy family behaviors. Copyright © 2014 Mosby, Inc. All rights reserved.

  17. Life satisfaction two-years after stroke onset: the effects of gender, sex occupational status, memory function and quality of life among stroke patients (Newsqol) and their family caregivers (Whoqol-bref) in Luxembourg

    OpenAIRE

    Baumann, Mich?le; Couffignal, Sophie; Le Bihan, Etienne; Chau, Nearkasen

    2012-01-01

    Abstract Background Life satisfaction (LS) of cerebrovascular disease survivors and their family caregivers may relate to socioeconomic factors, impaired functions, health-related quality of life (QoL), but their respective influences remain unclear. This study assessed, two years post-stroke onset, the effects of these factors on patients’ LS and family caregivers’ LS in Luxembourg. Methods All stroke patients admitted to all hospitals in Luxembourg were identified by the ‘Inspection Général...

  18. Mental health and sleep of older wife caregivers for spouses with Alzheimer's disease and related disorders.

    Science.gov (United States)

    Willette-Murphy, Karen; Todero, Catherine; Yeaworth, Rosalee

    2006-10-01

    This descriptive study examined sleep and mental health variables in 37 older wife caregivers for spouses with dementia compared to 37 age-matched controls. The relationships among selected caregiving variables (behavioral problems, caregiving hours, and years of caregiving), appraisal of burden, self-reported sleep efficiency for the past week, and mental health outcomes were examined. Lazarus and Folkman's stress and coping framework guided the study. Mental health and sleep were poorer for caregivers. Caregiving and appraisal of burden variables showed direct and indirect effects on mental health. However, caregiving and appraisal of burden variables were not significant for predicting sleep efficiency. Sleep efficiency was a good predictor of mental health in this sample of wife caregivers.

  19. The relationship between health-related quality of life and social networks among Japanese family caregivers for people with disabilities.

    Science.gov (United States)

    Arai, Hirokazu; Nagatsuka, Miwa; Hirai, Kei

    2008-10-01

    The purpose of this study was to examine HRQOL depending on whether the participants have family members with disabilities or not. In addition, we examined the relationship between HRQOL and social networks among family caregivers in Japan. The study has a cross-sectional design. Survey forms were distributed to 9205 people aged 30 and older who visited a dispensing pharmacy within fifteen areas of Japan. We collected data on gender, age, job status, and care giving status for persons with disabilities. Moreover, we assessed support size, social support, and HRQOL. Out of the 2029 questionnaires returned, 1763 (male: 663, female: 1100, mean age = 63.06 +/- 13.34) were valid for statistical analyses (the available response rate was 19.15%). A significant difference in HRQOL was identified between family caregivers and non-family caregivers. Further, in males (N = 101), the results confirmed that only social support predicted the PCS and MCS scores, while other variables did not predict either score. On the other hand, in females (N = 144), it was found from the second step of hierarchical multiple regression analysis that only age explained the PCS score, while job status and support size explained the MCS score. It is reasonable to conclude that the HRQOL of family caregivers was lower than that of non-family caregivers, and that the HRQOL of family caregivers was estimated by their social networks.

  20. The relationship between health-related quality of life and social networks among Japanese family caregivers for people with disabilities

    Directory of Open Access Journals (Sweden)

    Nagatsuka Miwa

    2008-10-01

    Full Text Available Abstract Aims The purpose of this study was to examine HRQOL depending on whether the participants have family members with disabilities or not. In addition, we examined the relationship between HRQOL and social networks among family caregivers in Japan. Methods The study has a cross-sectional design. Survey forms were distributed to 9205 people aged 30 and older who visited a dispensing pharmacy within fifteen areas of Japan. We collected data on gender, age, job status, and care giving status for persons with disabilities. Moreover, we assessed support size, social support, and HRQOL. Out of the 2029 questionnaires returned, 1763 (male: 663, female: 1100, mean age = 63.06 ± 13.34 were valid for statistical analyses (the available response rate was 19.15%. Results A significant difference in HRQOL was identified between family caregivers and non-family caregivers. Further, in males (N = 101, the results confirmed that only social support predicted the PCS and MCS scores, while other variables did not predict either score. On the other hand, in females (N = 144, it was found from the second step of hierarchical multiple regression analysis that only age explained the PCS score, while job status and support size explained the MCS score. Conclusion It is reasonable to conclude that the HRQOL of family caregivers was lower than that of non-family caregivers, and that the HRQOL of family caregivers was estimated by their social networks.

  1. The Positive and Negative Experiences of Caregiving for Siblings of Young People with First Episode Psychosis

    Science.gov (United States)

    Bowman, Siann; Alvarez-Jimenez, Mario; Wade, Darryl; Howie, Linsey; McGorry, Patrick

    2017-01-01

    Background: The impact of first episode psychosis (FEP) upon parents’ experience of caregiving has been well-documented. However, the determinants and nature of this remain poorly understood in siblings. It is hypothesized that siblings of young people with FEP are also impacted by caregiving and burden. This study aimed to characterize the experience of caregiving for siblings of young people with FEP. Method: Survey methodology was used to explore the experience of 157 siblings in the first 18 months of their brother or sister’s treatment for FEP. Participants reported on their appraisal of the negative and positive aspects of caregiving as measured by the Experience of Caregiving Inventory (ECI). Descriptive statistics were used to establish the results for the total sample as well as for gender and birth order differences. A series of multivariate regression analyses were conducted to determine the relationships between illness characteristics and siblings’ experience of caregiving. Results: Older brothers reported the lowest scores for negative experiences in caregiving and younger sisters reported the highest. Negative experiences in caregiving resulted in less warmth within the sibling relationship and impacted negatively upon quality of life. When the young person with FEP had attempted suicide and/or been physically violent, siblings experienced more caregiver burden. Multivariate analysis showed that female gender was a significant factor in explaining the impact of illness related variables on the experience of caregiving. Conclusion: Suicide attempts and a history of violence resulted in higher caregiving burden for siblings regardless of whether they lived with the young person experiencing FEP or not. Female siblings are at higher risk of negative experiences from caregiving resulting in a reduced quality of life and a changed sibling relationship. Suicide attempts and violence are indicators for intensive case management to improve outcomes for

  2. The Positive and Negative Experiences of Caregiving for Siblings of Young People with First Episode Psychosis

    Directory of Open Access Journals (Sweden)

    Siann Bowman

    2017-05-01

    Full Text Available Background: The impact of first episode psychosis (FEP upon parents’ experience of caregiving has been well-documented. However, the determinants and nature of this remain poorly understood in siblings. It is hypothesized that siblings of young people with FEP are also impacted by caregiving and burden. This study aimed to characterize the experience of caregiving for siblings of young people with FEP.Method: Survey methodology was used to explore the experience of 157 siblings in the first 18 months of their brother or sister’s treatment for FEP. Participants reported on their appraisal of the negative and positive aspects of caregiving as measured by the Experience of Caregiving Inventory (ECI. Descriptive statistics were used to establish the results for the total sample as well as for gender and birth order differences. A series of multivariate regression analyses were conducted to determine the relationships between illness characteristics and siblings’ experience of caregiving.Results: Older brothers reported the lowest scores for negative experiences in caregiving and younger sisters reported the highest. Negative experiences in caregiving resulted in less warmth within the sibling relationship and impacted negatively upon quality of life. When the young person with FEP had attempted suicide and/or been physically violent, siblings experienced more caregiver burden. Multivariate analysis showed that female gender was a significant factor in explaining the impact of illness related variables on the experience of caregiving.Conclusion: Suicide attempts and a history of violence resulted in higher caregiving burden for siblings regardless of whether they lived with the young person experiencing FEP or not. Female siblings are at higher risk of negative experiences from caregiving resulting in a reduced quality of life and a changed sibling relationship. Suicide attempts and violence are indicators for intensive case management to

  3. Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers.

    Science.gov (United States)

    Walczak, Adam; Butow, Phyllis N; Clayton, Josephine M; Tattersall, Martin H N; Davidson, Patricia M; Young, Jane; Epstein, Ronald M

    2014-06-26

    Timely communication about life expectancy and end-of-life care is crucial for ensuring good patient quality-of-life at the end of life and a good quality of death. This article describes the protocol for a multisite randomised controlled trial of a nurse-led communication support programme to facilitate patients' and caregivers' efforts to communicate about these issues with their healthcare team. This NHMRC-sponsored trial is being conducted at medical oncology clinics located at/affiliated with major teaching hospitals in Sydney, Australia. Patients with advanced, incurable cancer and life expectancy of less than 12 months will participate together with their primary informal caregiver where possible. Guided by the self-determination theory of health-behaviour change, the communication support programme pairs a purpose-designed Question Prompt List (QPL-an evidence-based list of questions patients/caregivers can ask clinicians) with nurse-led exploration of QPL content, communication challenges, patient values and concerns and the value of early discussion of end-of-life issues. Oncologists are also cued to endorse patient and caregiver question asking and use of the QPL. Behavioural and self-report data will be collected from patients/caregivers approximately quarterly for up to 2.5 years or until patient death, after which patient medical records will be examined. Analyses will examine the impact of the intervention on patients' and caregivers' participation in medical consultations, their self-efficacy in medical encounters, quality-of-life, end-of-life care receipt and quality-of-death indicators. Approvals have been granted by the human ethics review committee of Royal Prince Alfred Hospital and governance officers at each participating site. Results will be reported in peer-reviewed publications and conference presentations. Australian New Zealand Clinical Trials Registry ACTRN12610000724077. Published by the BMJ Publishing Group Limited. For

  4. Quality of life and personality traits in patients with malignant pleural mesothelioma and their first-degree caregivers

    Directory of Open Access Journals (Sweden)

    Granieri A

    2013-08-01

    Full Text Available Antonella Granieri,1 Stella Tamburello,2 Antonino Tamburello,2 Silvia Casale,3 Chiara Cont,1 Fanny Guglielmucci,1 Marco Innamorati21Università degli Studi di Torino, Turin, Italy; 2Università Europea di Roma, Rome, Italy; 3Università di Firenze, Firenze, ItalyAbstract: Asbestos exposure causes significant pleural diseases, including malignant pleural mesothelioma (MPM. Taking into account the impact of MPM on emotional functioning and wellbeing, this study aimed to evaluate the quality of life and personality traits in patients with MPM and their first-degree caregivers through the World Health Organization Quality of Life–BREF (WHOQOL-BREF and the Minnesota Multiphasic Personality Inventory-2 Restructured Form (MMPI-2-RF. The sample was composed of 27 MPM patients, 55 first-degree relatives enrolled in Casale Monferrato and Monfalcone (Italy, and 40 healthy controls (HC. Patients and relatives reported poorer physical health than the HC. Patients had a higher overall sense of physical debilitation and poorer health than relatives and the HC, more numerous complaints of memory problems and difficulties in concentrating, and a greater belief that goals cannot be reached or problems solved, while often claiming that they were more indecisive and inefficacious than the HC. First-degree relatives reported lower opinions of others, a greater belief that goals cannot be reached or problems solved, support for the notion that they are indecisive and inefficacious, and were more likely to suffer from fear that significantly inhibited normal activities than were HC. In multinomial regression analyses, partial models indicated that sex, physical comorbidities, and the True Response Inconsistency (TRIN-r, Malaise (MLS, and Behavior-Restricting Fears (BRF dimensions of the MMPI-2-RF had significant effects on group differences. In conclusion, health care providers should assess the ongoing adjustment and emotional wellbeing of people with MPM and their

  5. Positive emotion, appraisal, and the role of appraisal overlap in positive emotion co-occurrence.

    Science.gov (United States)

    Tong, Eddie M W; Jia, Lile

    2017-02-01

    Appraisal research has traditionally focused on negative emotions but has not addressed issues concerning the relationships between several positive emotions and appraisals in daily life and the extent to which co-occurrence of positive emotions can be explained by overlap in appraisals. Driven by a priori hypotheses on appraisal-emotion relationships, this study investigated 12 positive emotions and 13 appraisal dimensions using Ecological Momentary Assessment. The results provide strong evidence that positive emotions and appraisals correlate significantly in daily life. Importantly, we found that the positive emotions' overlap on theoretically relevant, as compared to irrelevant, appraisals was stronger and more predictive of their co-occurrence. Furthermore, appraisal overlap on theoretically relevant appraisals predicted the co-occurrence of positive emotions even when the appraisal of pleasantness was excluded, indicating that positive emotions do not co-occur just by virtue of their shared valence. Our findings affirmed and refined the appraisal profiles of positive emotions and underscore the importance of appraisals in accounting for the commonality and differences among positive emotions. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

  6. Stress appraisals and cellular aging: A key role for anticipatory threat in the relationship between psychological stress and telomere length

    Science.gov (United States)

    O’Donovan, Aoife; Tomiyama, A. Janet; Lin, Jue; Puterman, Eli; Adler, Nancy E.; Kemeny, Margaret; Wolkowitz, Owen M.; Blackburn, Elizabeth H.; Epel, Elissa S.

    2012-01-01

    Chronic psychological stressis a risk factor formultiple diseases of aging. Accelerated cellular aging as indexed by short telomere length has emerged as a potential common biological mechanism linking various forms of psychological stress and diseases of aging. Stress appraisals determine the degree and type of biological stress responses and altered stress appraisals may be a common psychological mechanism linking psychological stress and diseases of aging. However, no previous studies have examined the relationship between stress appraisals and telomere length. We exposed chronically stressed female caregivers and non-caregiving controls (N= 50; M age = 62.14±6.10) to a standardized acute laboratory stressor and measured their anticipatory and retrospective threat and challenge appraisals of the stressor. We hypothesized that threat and challenge appraisals would be associated with shorter and longer telomere length respectively, and that chronic care giving stress would influence telomere length through altered stress appraisals. Higher anticipatory threat appraisals were associated with shorter age-adjusted telomere length (β = −.32, p = .03), but challenge appraisals and retrospective threat appraisals showed no independent association with telomere length. Caregivers reported significantly higher anticipatory (β = −.36, p = .006)and retrospective (β = −.29, p = .03) threat appraisals than controls, but similar challenge appraisals. Although there was no significant main effect of caregiver status on telomere length, care giving had a significant indirect effect on telomere length through anticipatory threat appraisals. Exaggerated anticipatory threat appraisals may be a common and modifiable psychological mechanism of psychological stress effects on cellular aging. PMID:22293459

  7. Approaches to capturing the financial cost of family care-giving within a palliative care context: a systematic review.

    Science.gov (United States)

    Gardiner, Clare; Brereton, Louise; Frey, Rosemary; Wilkinson-Meyers, Laura; Gott, Merryn

    2016-09-01

    The economic burden faced by family caregivers of people at the end of life is well recognised. Financial burden has a significant impact on the provision of family care-giving in the community setting, but has seen limited research attention. A systematic review with realist review synthesis and thematic analysis was undertaken to identify literature relating to the financial costs and impact of family care-giving at the end of life. This paper reports findings relating to previously developed approaches which capture the financial costs and implications of caring for family members receiving palliative/end-of-life care. Seven electronic databases were searched from inception to April 2012, for original research studies relating to the financial impact of care-giving at the end of life. Studies were independently screened to identify those which met the study inclusion criteria, and the methodological quality of included studies was appraised using realist review criteria of relevance and rigour. A descriptive thematic approach was used to synthesise data. Twelve articles met the inclusion criteria for the review. Various approaches to capturing data on the financial costs of care-giving at the end of life were noted; however, no single tool was identified with the sole purpose of exploring these costs. The majority of approaches used structured questionnaires and were administered by personal interview, with most studies using longitudinal designs. Calculation of costs was most often based on recall by patients and family caregivers, in some studies combined with objective measures of resource use. While the studies in this review provide useful data on approaches to capturing costs of care-giving, more work is needed to develop methods which accurately and sensitively capture the financial costs of caring at the end of life. Methodological considerations include study design and method of administration, contextual and cultural relevance, and accuracy of cost

  8. Factors influencing the health-related quality of life of Chinese advanced cancer patients and their spousal caregivers: a cross-sectional study.

    Science.gov (United States)

    Li, Qiuping; Xu, Yinghua; Zhou, Huiya; Loke, Alice Yuen

    2016-08-02

    Cancer and its treatment have a major impact on the lives of patients and their intimate partners, such as on their health-related quality of life (HRQOL). The aims of this study are to: (i) assess the HRQOL of advanced cancer patients and spousal caregivers, and explore the relationship between the HRQOL of cancer patients and that of their spousal caregivers; (ii) detect factors influencing the HRQOL of cancer patients and spousal caregivers; and (iii) explore the impact of anxiety and depression on the HRQOL of couples. A total of 131 couples where one of the partners was hospitalized for advanced cancer were invited to complete a survey to assess their demographic and background information, HRQOL, and anxiety and depression. HRQOL was measured using the SF-12, while anxiety and depression were measured using the Hospital Anxiety and Depression Scale. Data were analyzed using a T-test, Pearson correlations, multiple linear regressions, and structural equation modeling. In general, the spousal caregivers had higher levels of HRQOL (seven out of eight SF-12 domains and two SF-12 dimensions) p = 0.038-0.000, anxiety (p = 0.002), and depression (p = 0.011) than patients. Correlations of HRQOL between patients and spouses were small to moderate (r = 0.193-0.398). Multiple independent factors influencing the physical component summary (PCS), mental component summary (MCS), vitality (VT), and role emotional (RE) sections of the SF-12 were identified, including: gender, time since diagnosis, levels of education, working status, the extent to which spousal caregivers were informed about the disease, improved marital relationship after the diagnosis of cancer, and anxiety and depression. For both patients and spousal caregivers, the strongest independent factor influencing HRQOL (SF-12 PCS, MCS, VT, and RE) was anxiety and depression. Anxiety and depression may have both actor and partner effects on the HRQOL of couples to various degrees. The findings of

  9. Compassionate Love in Individuals With Alzheimer’s Disease and Their Spousal Caregivers: Associations With Caregivers’ Psychological Health

    Science.gov (United States)

    Monin, Joan K.; Schulz, Richard; Feeney, Brooke C.

    2015-01-01

    Purpose of the Study: To examine whether compassionate love in both individuals with Alzheimer’s disease (AD) and their spousal caregivers related to less caregiving burden, more positive caregiving appraisals, and less depressive symptoms for caregivers. Design and Methods: Fifty-eight individuals with AD and their spousal caregivers participated in interviews in which both partners reported their compassionate love for their partner, and caregivers self-reported burden, positive appraisals of caregiving, and depressive symptoms. Results: As hypothesized, both AD individuals’ and caregivers’ compassionate love were associated with less burden and more positive appraisals of caregiving. Also, care givers’ compassionate love mediated the association between AD individuals’ compassionate love and caregivers’ burden as well as the association between AD individuals’ compassionate love and caregivers’ positive appraisals of caregiving. Finally, there was a marginally significant association between caregivers’ compassionate love and less caregiver depressive symptoms. Implications: Results suggest that AD individuals’ compassionate love is related to compassionate love in caregivers, which in turn relates to reduced burden but not significantly less depressive symptoms for caregivers. Assessing caregivers’ and AD individuals’ feelings of compassionate love may be useful in identifying caregivers who are resilient and those who are at a heightened risk for caregiving burden. Also, interventions that enhance both partners’ compassionate love may benefit caregivers. PMID:24534607

  10. Parents' and caregivers' perceptions of the quality of life of adolescents in the first 4 months of orthodontic treatment with a fixed appliance.

    Science.gov (United States)

    Abreu, Lucas G; Melgaço, Camilo A; Lages, Elizabeth M B; Abreu, Mauro H N G; Paiva, Saul M

    2014-09-01

    To evaluate adolescents oral health-related quality of life (OHRQoL) in the first 4 months of fixed orthodontic appliance treatment using parents and caregivers as proxies. Descriptive study. Department of Pediatric Dentistry and Orthodontics at Universidade Federal de Minas Gerais, Belo Horizonte, Brazil. A sample of parents and caregivers of 95 adolescents undergoing orthodontic treatment with a fixed appliance. Participants were required to answer the Brazilian version of the Parental-Caregivers Perceptions Questionnaire (P-CPQ) before adolescent's treatment (T1) and 4 months after bonding of the fixed appliance (T2). Statistical analysis was carried out using the Wilcoxon signed rank test and the Bonferroni correction for the domains of P-CPQ. Among the 95 participants, there were 73 mothers, 18 fathers and 4 were other relations. There was a statistically significant improvement in the overall score as well as in both emotional and social wellbeing subscales (Porthodontic treatment with a fixed appliance. © 2014 British Orthodontic Society.

  11. Validation of a model of family caregiver communication types and related caregiver outcomes.

    Science.gov (United States)

    Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca

    2017-02-01

    Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test

  12. Help for the Caregiver

    Science.gov (United States)

    ... patient needs the caregiver to do, but also what the caregiver is willing and able to do. Caregiver strain ... be caused by the cancer or the treatments. What the caregiver is expected to do Caregivers report that they ...

  13. Patient and caregiver perspectives on decision support for symptom and quality of life management during cancer treatment: Implications for eHealth.

    Science.gov (United States)

    Cooley, Mary E; Nayak, Manan M; Abrahm, Janet L; Braun, Ilana M; Rabin, Michael S; Brzozowski, Jane; Lathan, Christopher; Berry, Donna L

    2017-08-01

    Adequate symptom and quality-of-life (SQL) management is a priority during cancer treatment. eHealth is a timely way to enhance patient-engagement, facilitate communication, and improve health outcomes. The objectives of this study were to describe patient and caregivers' perspectives for providing, processing, and managing SQL data to enhance communication and identify desired components for decision support. Data were collected from 64 participants through questionnaires and focus groups. Analysis was conducted using NVivo. Open and axial coding was completed, grouping commonalities and large constructs into nodes to identify and synthesize themes. Face-to-face meetings with clinicians were the prime time to communicate, and patients strove to understand treatment options and the effect on SQL by bringing caregivers to their visits, taking notes, tracking symptoms, and creating portable health records. Patients/caregivers struggled to self-manage their symptoms and were uncertain when to contact clinicians when experiencing uncontrolled symptoms. Most participants identified eHealth solutions for decision support. However, 38% of participants (n = 24) rarely used computers and identified non-eHealth options for decision support. Core components for both eHealth and non-eHealth systems were access to (1) cancer information, (2) medical records, (3) peer support, and (4) improved support and understanding on when to contact clinicians. Patients were faced with an overwhelming amount of information and relied on their caregivers to help navigate the complexities of cancer care and self-manage SQL. Health technologies can provide informational support; however, decision support needs to span multiple venues to avoid increasing disparities caused by a digital divide. Copyright © 2017 John Wiley & Sons, Ltd.

  14. Measuring Engagement in Later Life Activities: Rasch-Based Scenario Scales for Work, Caregiving, Informal Helping, and Volunteering

    Science.gov (United States)

    Ludlow, Larry H.; Matz-Costa, Christina; Johnson, Clair; Brown, Melissa; Besen, Elyssa; James, Jacquelyn B.

    2014-01-01

    The development of Rasch-based "comparative engagement scenarios" based on Guttman's facet theory and sentence mapping procedures is described. The scenario scales measuring engagement in work, caregiving, informal helping, and volunteering illuminate the lived experiences of role involvement among older adults and offer multiple…

  15. Everyday life and social relations in home-living patients with mild Alzheimer's disease and their caregivers: Quantitative and qualitative analyses

    DEFF Research Database (Denmark)

    Sørensen, Lisbeth Villemoes

    2007-01-01

    and the presence of neuropsychiatric symptoms. In the second study, data were collected using semi-structured research interviews with 11 patients before their participation in the DAISY intervention programme. Grounded theory analysis of the interview data revealed that the basic social psychological problem...... with the changes they face in relation to everyday life and social relations; and 3) to identify and analyse the experience of patients and their spousal caregivers concerning the impact of an intensive psychosocial intervention programme with tailored counselling, education courses and support groups, conducted...

  16. Positive aspects of caregiving and its correlates in caregivers of schizophrenia: a study from north India.

    Science.gov (United States)

    Kate, N; Grover, S; Kulhara, P; Nehra, R

    2013-06-01

    OBJECTIVE. To study the positive aspects of caregiving and its correlates in primary caregivers of patients with schizophrenia. METHODS. A total of 100 patients with schizophrenia and their primary caregivers were evaluated. Regarding the caregivers, their positive aspects of caregiving were assessed on the Scale for Positive Aspects of Caregiving Experience (SPACE). To examine the correlates of positive aspects of caregiving, they were also assessed on the Family Burden Interview (FBI) Schedule, the Involvement Evaluation Questionnaire (IEQ), coping checklist, the Social Support Questionnaire, the World Health Organization Quality of Life-BREF (Hindi version), the WHO Quality of Life-Spirituality, Religiousness and Personal Beliefs Scale, as well as the General Health Questionnaire-12. The patients were assessed on the Positive and Negative Syndrome Scale (PANSS) and the Global Assessment of Functioning Scale. RESULTS. On the SPACE, the highest mean score was seen in the domain of motivation for the caregiving role (2.7), followed by that of caregiver satisfaction (2.4) and caregiver gains (2.3). The mean score was least for the domain of self-esteem and social aspect of caring (1.9). The SPACE domain of caregiver satisfaction correlated negatively with many aspects of burden as assessed by FBI Schedule and coping as assessed by the coping checklist; whereas the self-esteem and social aspect of caring domain correlated positively with worrying-urging II domain and the total IEQ score. No significant correlations between the SPACE and socio-demographics as well as most of the clinical variables were noted. Motivation for the caregiving had a positive correlation with the PANSS negative symptom scale. Multiple correlations were found between the SPACE and quality of life, suggesting that higher positive caregiving experience was associated with better quality of life in caregivers. CONCLUSION. Caregivers of patients with schizophrenia do enjoy positive aspects of

  17. Effects of Methicillin-Resistant Staphylococcus aureus/Multiresistant Gram-Negative Bacteria Colonization or Infection and Isolation Measures in End of Life on Family Caregivers: Results of a Qualitative Study.

    Science.gov (United States)

    Heckel, Maria; Sturm, Alexander; Herbst, Franziska A; Ostgathe, Christoph; Stiel, Stephanie

    2017-03-01

    Little is known about the experiences of family caregivers of hospitalized patients with confirmed methicillin-resistant Staphylococcus aureus/multiresistant gram-negative bacteria (MRSA/MRGN) diagnosis at the end of life. The study at hand is a subproject of an interdisciplinary cooperation project that aims at developing a patient-, family-, and team-centered approach in dealing with MRSA/MRGN-positive hospitalized patients in palliative and geriatric care. The present study aimed to assess the individual effects of the patient's MRSA/MRGN colonization or infection and isolation measures on family caregivers. Between April 2014 and September 2015, all known family caregivers associated with an MRSA/MRGN-positive patient from a palliative care unit, a hospital palliative care support team, and a geriatric ward were considered for study participation. A qualitative interview study with family caregivers and an additional focus group was conducted. Data were analyzed using the principles of Grounded Theory. Family caregivers (N = 62) raised suggestions regarding the provision of information and communication on the MRSA/MRGN diagnosis and hygiene measures from staff members and the consistency of hygiene procedures. Family caregivers requested not to be stigmatized or being disadvantaged due to the MRSA/MRGN diagnosis of the patient, and they wished to receive psychosocial and emotional support. Staff members and institutional stakeholders should be aware that family caregivers might be burdened and upset by positive MRSA/MRGN diagnosis and the required hygiene measures. The need for detailed and understandable information on MRSA/MRGN, adequate communication between staff members and family caregivers, and support for family caregivers should be of special attention in particular in end-of-life care.

  18. [Resilience in caregivers of patients with dementia: A preliminary study].

    Science.gov (United States)

    Fernández-Lansac, Violeta; Crespo López, María; Cáceres, Rebeca; Rodríguez-Poyo, María

    2012-01-01

    Caring for a relative with dementia often has negative effects on the caregiver's physical and psychological health. However, many caregivers successfully cope with the stress factors arising from care, and even have uplifts during their experience, showing high resilience levels. This study presents a preliminary analysis of resilience in caregivers of patients with dementia, exploring its relationship with different variables. Resilience was assessed (by CD-RISC) in 53 family caregivers of patients with dementia. Resilience was correlated to the following variables: caregiving context, stressors (e.g., cognitive impairment), appraisals (e.g., burden), moderators (e.g., personality traits and resources), and caregiving consequences (physical and psychological health). The participants showed moderate scores on resilience. Resilience was associated with poor emotional and physical status (significant inverse correlations with anxiety, depression, psycho-active drug use, health habits…). High resilience scores were significantly correlated to burden, neuroticism and extraversion, self-efficacy, self-esteem and less use of emotion focused coping strategies. Higher resilience relates to a good emotional and physical status in caregivers. Moreover, resilience is more associated with caregiver variables (e.g., appraisal and coping with care, personality features), than to situational variables. The data highlight the strengthening of these types of appraisal and coping as a way to improve caregivers' resilience and, consequently, their health. Copyright © 2011 SEGG. Published by Elsevier Espana. All rights reserved.

  19. Validation of the National Institutes of Health Patient-Reported Outcomes Measurement Information System Survey as a Quality-of-Life Instrument for Patients with Malignant Brain Tumors and Their Caregivers.

    Science.gov (United States)

    Romero, Melissa M; Flood, Lisa Sue; Gasiewicz, Nanci K; Rovin, Richard; Conklin, Samantha

    2015-12-01

    At present there is a lack of well-validated surveys used to measure quality of life in patients with malignant brain tumors and their caregivers. The main objective of this pilot study was to validate the National Institutes of Health Patient-Reported Outcomes Measurement Information System (NIH PROMIS) survey for use as a quality-of-life measure in this population. This article presents the rationale for using the NIH PROMIS instrument as a quality-of-life measure for patients with malignant brain tumors and their caregivers. Copyright © 2015 Elsevier Inc. All rights reserved.

  20. A case of industrial safety appraisal for extension of service life of GTK-10-4 gas turbines used at gas transmission stations

    Science.gov (United States)

    Rybnikov, A. I.; Kovalev, A. G.; Kryukov, I. I.; Leont'ev, S. A.; Moshnikov, A. V.

    2017-04-01

    It is shown that the extended life and enhanced operational reliability of parts and subassemblies of the most popular GTK-10-4 gas transmission plants are determined by the enhanced efficiency of the control over technical condition and operational safety of turbine plants in conformity with industrial safety requirements imposed on gas pipeline compressor stations. It has been established that the materials of parts and subassemblies of gas turbine plants with different, especially with maximal operating time, shall be exposed to NDT for the purpose of determining the actual mechanical characteristics of these materials with different operating time and calculating residual life. The analysis of damageability and operating conditions has helped to identify parts and subassemblies for repair or replacement with the highest frequency of unacceptable defects. These parts and subassemblies have been shown to include base members of the axial compressor (AC), a turbine housing, an axial compressor rotor, high- and low-pressure turbine (HPT and LPT) discs, a 12-part holder, the housing of the holder of HPT and LPT guiding blades, a sealed baffler, and working and guiding AC, LPT and HPT blades. The most typical operational defects have been enumerated and analyzed. It has been determined that the primary task of the industrial safety appraisal for extending the life of GTK-10-4 with limit-exceeding operating time is to thoroughly examine HPT and LPT discs with more than 130,000 hours of operating time and establish by DT methods characteristics of materials for evaluation, taking account of their degradation, and residual life of critical turbine elements. In addition, it has been shown that the service life of HP turbine discs can be extended by replacing the disc material (EP-428 12% chromium steel) with a material with a higher linear expansion factor that somewhat exceeds the expansion factor of EI-893 nickel alloy used to melt out working blades.

  1. Gender Differences in Dementia Spousal Caregiving

    Directory of Open Access Journals (Sweden)

    Minna Maria Pöysti

    2012-01-01

    Full Text Available The proportion of male caregivers is rapidly increasing. However, there are few large scale studies exploring gender differences in the burden or coping with caregiving. We investigated this among caregivers of patients with dementia. The study cohort consisted of 335 dyads of wife-husband couples from two studies including dementia patients and their spousal caregivers. Baseline mini-mental state examination (MMSE, clinical dementia rating scale (CDR, neuropsychiatric inventory (NPI, cornell depression scale and charlson comorbidity index (CCI were used to describe patients with dementia, Zarit burden scale and geriatric depression scale were used to measure experienced burden and depression of caregivers. Mean age of caregivers was 78 years. There were no differences in depression, satisfaction with life, or loneliness according to caregivers' gender. Male caregivers had more comorbidities than females (CCI 1.9 versus 1.1, P<0.001, and the wives of male caregivers had a more severe stage of dementia than husbands of female caregivers (CDR, P=0.048; MMSE14.0 versus 17.7, P<0.001. However, the mean Zarit burden scale was significantly lower among male than female caregivers (31.5 versus 37.5; P<0.001. Lower education of male caregivers tended to be associated with less experienced burden. In conclusion, male caregivers of dementia experienced lower burden than female caregivers despite care recipients' more severe disease.

  2. Prevalence of mobile phones and factors influencing usage by caregivers of young children in daily life and for health care in rural China: a mixed methods study.

    Science.gov (United States)

    van Velthoven, Michelle Helena; Li, Ye; Wang, Wei; Chen, Li; Du, Xiaozhen; Wu, Qiong; Zhang, Yanfeng; Rudan, Igor; Car, Josip

    2015-01-01

    To capitalise on mHealth, we need to understand the use of mobile phones both in daily life and for health care. To assess the prevalence and factors that influence usage of mobile phones by caregivers of young children. A mixed methods approach was used, whereby a survey (N=1854) and semi-structured interviews (N=17) were conducted concurrently. The quantitative and qualitative data obtained were compared and integrated. Participants were caregivers of young children in Zhao County, Hebei Province, China. Four main themes were found: (i) trends in mobile phone ownership; (ii) usage of mobile phone functions; (iii) factors influencing replying to text messages; and (iv) uses of mobile phones for health care. The majority of 1,854 survey participants (1,620; 87.4%) used mobile phones, but usage was much higher among mothers (1,433; 92.6%) and fathers (41; 100.0%) compared to grandparents (142; 54.6%). Parents were able to send text messages, grandparents often not. Factors influencing the decision to reply to text messages in daily life were checking the mobile phone, trusting the sender, emotion or feeling when receiving a text message, the importance of replying and ease of use of text messages. Of 1,620 survey participants who used a mobile phone, about one in four (432; 26.7%) had used it for health care in the past three months and most (1,110; 93.5%) of 1,187 who had not wished to use their phone to receive health information. We found that usage of mobile phones is high, several factors influencing usage and an interest of caregivers to use phones for health care in Zhao County, rural China, which can be used to inform studies in settings with similar characteristics. Future work needs to assess factors influencing mobile phone usage in-depth to optimize experiences of users for specific mHealth-based interventions.

  3. Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training.

    Science.gov (United States)

    Kristanti, Martina Sinta; Setiyarini, Sri; Effendy, Christantie

    2017-01-17

    Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia. The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant. The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031). Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of

  4. [I-THOU Eternal relationship in the life of caregivers of children with AIDS: study based on Martin Buber philosophy].

    Science.gov (United States)

    Schaurich, Diego

    2011-01-01

    This phenomenological study aimed at understanding, in the light of Martin Buber's philosophy, what is to be a caregiver of children with AIDS. The phenomenological interview guided the meeting with seven caregivers of children with AIDS, selected in a teaching hospital of Porto Alegre-RS, southern of Brazil. The data were interpreted in the light of hermeneutics, emerging the unit of meaning Dialogues 'between' the familiar I and the Eternal THOU. The dialogues take place in the search for answers that allow the understanding of the significance of the impact and challenges they face while living with AIDS. As well, they reveal hope in changes, in the cure and in a vaccine development. We believe that knowing the importance of dialogue in the context of HIV/AIDS epidemic provide the development of a nursing care that brings together the technical-scientific and humanistic aspects.

  5. Life satisfaction two-years after stroke onset: the effects of gender, sex occupational status, memory function and quality of life among stroke patients (Newsqol) and their family caregivers (Whoqol-bref) in Luxembourg.

    Science.gov (United States)

    Baumann, Michèle; Couffignal, Sophie; Le Bihan, Etienne; Chau, Nearkasen

    2012-09-25

    Life satisfaction (LS) of cerebrovascular disease survivors and their family caregivers may relate to socioeconomic factors, impaired functions, health-related quality of life (QoL), but their respective influences remain unclear. This study assessed, two years post-stroke onset, the effects of these factors on patients' LS and family caregivers' LS in Luxembourg. All stroke patients admitted to all hospitals in Luxembourg were identified by the 'Inspection Général de la Sécurité Sociale' using the only national system database for care expenditure reimbursement. Their diagnosis was confirmed by medical investigator. The sample included ninety four patients living at home having given consent (mean age 65.5 years) and sixty two main caregivers (mean age 59.3 years). Questionnaires were completed during face-to-face interviews. LS was assessed via European single question (range 1-10), survivors' QoL via Newsqol (11 dimensions), and caregivers' QoL via Whoqol-bref (4 domains) (range 0-100). Data were analysed using multiple regression models. Two years after stroke onset, 44.7% of patients suffered from impaired sensory function, 35.1% from impaired motor function, and 31.9% from impaired memory function. Mean patient' LS was 7.1/10 (SD 1.9). It was higher in women (+12.4) and lower among unemployed socioeconomically active patients (-13.1, vs. retired people). Adjusted for sex, occupation, impaired motor and memory functions, LS positively correlated with scores of Newsqol feelings, sleep, emotion, cognition and pain dimensions (slopes 0.20 to 0.31), but did not correlate with those of caregivers' Whoqol-bref domains. Family caregiver' LS was 7.2 (SD 1.7). It was lower in those with patients suffering from impaired memory function (-12.8) as well as from feelings and emotion issues (slopes 0.22). It was associated with all caregivers' Whoqol-bref domains (physical health, psychological health, environment, and social relationships) (slopes 0.53 to 0.68). Two

  6. Psychometric Testing of Two Chinese-Version Scales on Attitudes Toward and Caregiving Behaviors for End-of-Life Patients and Families.

    Science.gov (United States)

    Yang, Luke; Liu, Yung-Fang; Sun, Huey-Fang; Chiang, Hsien-Hsien; Tsai, Yu-Lun; Liaw, Jen-Jiuan

    2017-03-01

    The study purpose was to examine the validities and reliabilities of the Chinese-versions Frommelt Attitudes Toward Care of the Dying Scale (Attitudes Scale) and Caregiving Behaviors Scale for End-of-Life Patients and Families (Behaviors Scale). The scales were tested in a convenience sample of 318 nurses with ≥6 months work experience at three hospitals. Cronbach's alphas of the Attitudes and Behaviors Scales were .90 and .96, respectively. Each scale had Kaiser-Meyer-Olkin index >.85 and Bartlett's test of sphericity >4000 ( p < .001). Attitudes Scale loaded on three factors: respecting and caring for dying patients and families, avoiding care of the dying, and involving patients and families in end-of-life care. The Behaviors Scale loaded on two factors: supporting dying patients and families, and helping families cope with grief. Factor loadings for both scales were ≥.49. Both Attitudes and Behaviors Scales are reliable and valid for evaluating nurses' attitudes and caregiving behaviors for the dying.

  7. Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life.

    Science.gov (United States)

    Borges, Eliana Lourenço; Franceschini, Juliana; Costa, Luiza Helena Degani; Fernandes, Ana Luisa Godoy; Jamnik, Sérgio; Santoro, Ilka Lopes

    2017-01-01

    Patients with lung cancer experience different feelings and reactions, based on their family, social, cultural, and religious backgrounds, which are a source of great distress, not only for the patients but also for their family caregivers. This study aimed to evaluate the impact that lung cancer stage and quality of life (QoL) of lung cancer patients have on caregiver burden. This was a prospective cross-sectional study. Consecutive patient-caregiver dyads were selected and asked to complete the Hospital Anxiety and Depression Scale and the Medical Outcomes Study 36-item ShortForm Health Survey (SF-36). Family caregivers also completed the Caregiver Burden Scale. Group-based modeling was used in order to identify patients with early- or advanced-stage cancer (IA to IIIA vs. IIIB to IV) plus non-impaired or impaired QoL (SF36 total score > 50 vs. ≤ 50). Patient-caregiver dyads were stratified into four groups: early-stage cancer+non-impaired QoL; advanced-stage cancer+non-impaired QoL; early-stage cancer+impaired QoL; and advanced-stage cancer+impaired QoL. We included 91 patient-caregiver dyads. The majority of the patients were male and heavy smokers. Family caregivers were younger and predominantly female. The burden, QoL, level of anxiety, and level of depression of caregivers were more affected by the QoL of the patients than by their lung cancer stage. The family caregivers of the patients with impaired QoL showed a higher median burden than did those of the patients with non-impaired QoL, regardless of disease stage. Caregiver burden is more affected by patient QoL than by lung cancer stage. Pacientes com câncer de pulmão vivenciam diferentes sentimentos e reações, dependendo de sua formação familiar, social, cultural e religiosa, que são fonte de grande sofrimento, não só para os pacientes mas também para seus cuidadores familiares. Este estudo objetivou avaliar o impacto do estágio do câncer de pulmão e da qualidade de vida (QV) dos

  8. Avaliação da qualidade de vida de cuidadores de afásicos Evaluation of the quality of life of caregivers of aphasic patients

    Directory of Open Access Journals (Sweden)

    Ivone Panhoca

    2009-01-01

    Full Text Available OBJETIVO: Avaliar a qualidade de vida de cuidadores de afásicos utilizando-se o The Medical Outcomes Study Short Form 36 (SF-36. MÉTODOS: Foram analisados 30 cuidadores de pacientes afásicos, de ambos os gêneros, na faixa etária de 16 a 70 anos. Do grupo controle fizeram parte 30 sujeitos, totalizando assim 60 sujeitos. Todos foram convidados a responder às questões do SF-36. Além disso, foram consideradas as variáveis: gênero, idade, há quanto tempo ocupa a posição de cuidador, grau de parentesco com o paciente, e comprometimento motor (marcha do afásico. Foram feitas análises de regressão univariada e descritivas para testar as associações entre as variáveis. As pontuações receberam tratamento estatístico utilizando-se o teste U de Mann-Whitney, considerados os objetivos propostos. RESULTADOS: Variáveis como idade, tempo que exerce a função de cuidador, parentesco e comprometimento motor (marcha da pessoa sob cuidados influenciaram significantemente as questões referentes aos aspectos físicos. Nos aspectos emocionais foram significativas apenas as variáveis idade e parentesco. Nos domínios referentes aos aspectos globais a única variável que influenciou no escore final foi o tempo de exercício da função de cuidador. Em relação aos aspectos físicos e globais, os cuidadores apresentaram escores estatisticamente iguais, enquanto que em relação aos aspectos emocionais observou-se que cuidadores tiveram menor escore do que o grupo controle. CONCLUSÃO: Em aspectos físicos e condições gerais, cuidadores e grupo controle não apresentaram diferenças consideráveis. Já em relação aos aspectos emocionais, os cuidadores apresentam-se mais comprometidos do que o grupo controle.PURPOSE: To evaluate the quality of life of caregivers of aphasic patients using the Medical Outcomes Study Short Form 36 (SF-36. METHODS: Thirty caregivers of aphasic patients of both genders, with ages varying from 16 to 70 years

  9. Adherence to Medical Regimens: Understanding the Effects of Cognitive Appraisal, Quality of Life, and Perceived Family Resiliency

    Science.gov (United States)

    Frain, Michael P.; Bishop, Malachy; Tschopp, Molly K.; Ferrin, Micheal J.; Frain, Judy

    2009-01-01

    Adherence studies have taken center stage due to the life-threatening risks associated with nonadherence to highly active antiretroviral therapy (HAART) regimens for people with HIV/AIDS. This study examines adherence through self-report of individuals on HAART regimens in a manner to account for demand characteristic bias, while still attempting…

  10. Influences on preschool children's oral health-related quality of life as reported by English and Spanish-speaking parents and caregivers.

    Science.gov (United States)

    Born, Catherine D; Divaris, Kimon; Zeldin, Leslie P; Rozier, R Gary

    2016-09-01

    This study examined young, preschool children's oral health-related quality of life (OHRQoL) among a community-based cohort of English and Spanish-speaking parent-child dyads in North Carolina, and sought to quantify the association of parent/caregiver characteristics, including spoken language, with OHRQoL impacts. Data from structured interviews with 1,111 parents of children aged 6-23 months enrolled in the Zero-Out Early Childhood Caries study in 2010-2012 were used. OHRQoL was measured using the overall score (range: 0-52) of the Early Childhood Oral Health Impact Scale (ECOHIS). We examined associations with parents' sociodemographic characteristics, spoken language, self-reported oral and general health, oral health knowledge, children's dental attendance, and dental care needs. Analyses included descriptive, bivariate, and multivariate methods based upon zero-inflated negative binomial regression. To determine differences between English and Spanish speakers, language-stratified model estimates were contrasted using homogeneity χ 2 tests. The mean overall ECOHIS score was 3.9 [95% confidence interval (CI) = 3.6-4.2]; 4.7 among English-speakers and 1.5 among Spanish speakers. In multivariate analyses, caregivers' education showed a positive association with OHRQoL impacts among Spanish speakers [prevalence ratio (PR) = 1.12 (95% CI = 1.03-1.22), for every added year of schooling], whereas caregivers' fair/poor oral health showed a positive association among English speakers (PR = 1.20; 95% CI = 1.02-1.41). The overall severity of ECOHIS impacts was low among this population-based sample of young, preschool children, and substantially lower among Spanish versus English speakers. Further studies are warranted to identify sources of these differences in - actual or reported - OHRQoL impacts. © 2016 American Association of Public Health Dentistry.

  11. Unravelling positive aspects of caregiving in dementia: An integrative review of research literature.

    Science.gov (United States)

    Yu, Doris S F; Cheng, Sheung-Tak; Wang, Jungfang

    2018-03-01

    Family caregiving is the crucial informal care resource to lessen the burdens associated with dementia. Research in this field has focused on reducing the caregiver's burden, but little attention has been given to promoting the positive aspects of caregiving. To conduct a systematic critical review of research on the nature of positive aspects of caregiving, and the factors predicting this phenomenon among family caregivers of dementia patients, with the ultimate purpose of gaining insights to explain how and why it emerges. A systematic search of the literature was undertaken in the databases OvidMedline, CINAHL, PsycINFO, Web of Science and Scopus, using the keywords 'care* AND Alzheimer OR dementia AND 'positive aspect' OR 'positive experience' OR 'positive perceptions' OR reward OR gain OR 'satisfaction with care*' OR 'care* satisfaction' OR benefit OR uplift OR meaning OR enjoyment OR pleasure OR growth OR hope OR gratification. The Critical Appraisal Skills Programme checklists for qualitative and cohort studies were used to evaluate data quality. Narrative data synthesis was undertaken using the five-stage Whittermore and Knafl method. A total of 3862 articles were identified, of which 41 were included in this review. The key findings are that positive aspects of caregiving among family caregivers of dementia patients form a multi-dimensional construct which covers four key domains: a sense of personal accomplishment and gratification, feelings of mutuality in a dyadic relationship, an increase of family cohesion and functionality, and a sense of personal growth and purpose in life. By integrating the findings about the nature and conditions predicting positive aspects of caregiving, the presence of three conditions was identified as promoting the emergence of such qualities i) personal and social affirmation of role fulfilment, ii) effective cognitive emotional regulation and iii) contexts which favour finding meaning in the caregiving process. The findings

  12. Informal Caregivers Assisting People with Multiple Sclerosis

    Science.gov (United States)

    Huang, Chunfeng

    2011-01-01

    The objective of this study was to identify characteristics of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving this assistance that are associated with the strength of the care-giver/care recipient relationship. Data were collected in a national survey of informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with caregiver perceptions of the strength of the relationship with the person with MS. The overall health of the person with MS was significantly associated with caregiver perceptions that providing assistance strengthened the caregiver/care recipient relationship, with poor health having a negative impact on the relationship. A spousal relationship between the caregiver and the person with MS was associated with significantly lower perceptions of a strengthened relationship. Conversely, caregiver perceptions that MS symptoms interfered with the independence of the person with MS in daily life were associated with caregiver perceptions of a strengthened relationship. Longer duration of caregiving and more hours per week spent providing assistance also were associated with a stronger relationship. In contrast, we found a significant negative association between caregiver perceptions that assisting the person with MS was burdensome and the strength of the relationship. Similarly, higher levels of education among caregivers tended to have a significantly negative impact on the caregiver/care recipient relationship. Our findings highlight the importance of addressing the needs and concerns of spousal caregivers. Health professionals who treat informal caregivers, as well as those treating people with MS, should be sensitive to the impact caregiving has on caregivers, especially spouses providing assistance. PMID:24453723

  13. LGBT Caregiver Concerns

    Science.gov (United States)

    LGBT CAREGIVER CONCERNS IMPORTANT CONSIDERATIONS FOR LGBT CAREGIVERS LGBT CAREGIVER CONSIDERATIONS As a caregiver for someone with Alzheimer’s disease, you will face various challenges. Some are common among all ...

  14. A study on caregiver burden: stressors, challenges, and possible solutions.

    Science.gov (United States)

    Bialon, Laura Nelson; Coke, Sallie

    2012-05-01

    The purpose of this qualitative study was to explore factors impacting caregiver burden and to explore possible solutions for family caregivers of terminally ill patients. The majority of caregivers reported experiencing role conflict and inadequate stress management. Caregivers who worked outside the home, those who cared for two parents concurrently, those with the least amount of outside assistance, and caregivers who spent a longer period of time caregiving reported the highest levels of health problems and overall burden. Caregivers stated a need for more support from Hospice agencies, more education on caregiver training, and more public education about Hospice services. Faith played a positive role in alleviating caregiver burden. Early identification, intervention, education and coordination of services may help to alleviate caregiver burden, which will improve quality of life for both patient and caregiver.

  15. Everyday life and social relations in home-living patients with mild Alzheimer's disease and their caregivers: Quantitative and qualitative analyses

    DEFF Research Database (Denmark)

    Sørensen, Lisbeth Villemoes

    2007-01-01

    Everyday life and social relations in home-living patients with mild Alzheimer’s disease (AD) and their caregivers: quantitative and qualitative analyses. This PhD project was carried out between April 2004 and March 2007 during my employment as project coordinator in the Memory Disorder Research...... and the presence of neuropsychiatric symptoms. In the second study, data were collected using semi-structured research interviews with 11 patients before their participation in the DAISY intervention programme. Grounded theory analysis of the interview data revealed that the basic social psychological problem...... faced by the patients was: their awareness of decline in personal dignity and value. Coping strategies used to meet these problems were adaptations to the altered situation in order to maintain a feeling of well-being. In the third study, data were collected using individual semi-structured research...

  16. Effects of a problem-solving intervention (COPE) on quality of life for patients with advanced cancer on clinical trials and their caregivers: simultaneous care educational intervention (SCEI): linking palliation and clinical trials.

    Science.gov (United States)

    Meyers, Frederick J; Carducci, Michael; Loscalzo, Matthew J; Linder, John; Greasby, Tamara; Beckett, Laurel A

    2011-04-01

    Patients on investigational clinical trials and their caregivers experience poor quality of life (QOL), which declines as the disease progresses. To examine the effect of a standardized cognitive-behavioral problem-solving educational intervention on the QOL of patients enrolled on investigational clinical trials and their caregivers. Prospective, multi-institution, randomized trial. QOL was measured repeatedly over 6 months. Patients were simultaneously enrolled onto phase 1, 2, or 3 Institutional Review Board (IRB)-approved cancer clinical trials. Intervention arm dyads participated in three conjoint educational sessions during the first month, learning the COPE problem solving model. Nonintervention arm dyads received usual care. Global QOL was measured by the City of Hope Quality of Life Instruments for Patients or Caregivers; problem solving skills were measured by the Social Problem Solving Inventory-Revised. The results are reported using the CONSORT statement. The analytic data set included 476 dyads including 1596 patient data points and 1576 care giver data points. Patient QOL showed no significant difference in the rate of change between the intervention and usual care arms (p = 0.70). Caregiver QOL scores in the intervention arm declined, but at less than half the rate in the control arm (p = 0.02). The COPE intervention enabled the average caregiver to come much closer to stable QOL over the 6-month follow-up. Future studies should enroll subjects much earlier in the cancer illness trajectory, a common patient/caregiver theme. The maximum effect was seen in caregivers who completed the 6-month follow-up, suggesting that the impact may increase over time.

  17. Prevalence of Mobile Phones and Factors Influencing Usage by Caregivers of Young Children in Daily Life and for Health Care in Rural China: A Mixed Methods Study

    Science.gov (United States)

    Wang, Wei; Chen, Li; Du, Xiaozhen; Wu, Qiong; Zhang, Yanfeng; Rudan, Igor; Car, Josip

    2015-01-01

    Introduction To capitalise on mHealth, we need to understand the use of mobile phones both in daily life and for health care. Objective To assess the prevalence and factors that influence usage of mobile phones by caregivers of young children. Materials and Methods A mixed methods approach was used, whereby a survey (N=1854) and semi-structured interviews (N=17) were conducted concurrently. The quantitative and qualitative data obtained were compared and integrated. Participants were caregivers of young children in Zhao County, Hebei Province, China. Results Four main themes were found: (i) trends in mobile phone ownership; (ii) usage of mobile phone functions; (iii) factors influencing replying to text messages; and (iv) uses of mobile phones for health care. The majority of 1,854 survey participants (1,620; 87.4%) used mobile phones, but usage was much higher among mothers (1,433; 92.6%) and fathers (41; 100.0%) compared to grandparents (142; 54.6%). Parents were able to send text messages, grandparents often not. Factors influencing the decision to reply to text messages in daily life were checking the mobile phone, trusting the sender, emotion or feeling when receiving a text message, the importance of replying and ease of use of text messages. Of 1,620 survey participants who used a mobile phone, about one in four (432; 26.7%) had used it for health care in the past three months and most (1,110; 93.5%) of 1,187 who had not wished to use their phone to receive health information. Conclusion We found that usage of mobile phones is high, several factors influencing usage and an interest of caregivers to use phones for health care in Zhao County, rural China, which can be used to inform studies in settings with similar characteristics. Future work needs to assess factors influencing mobile phone usage in-depth to optimize experiences of users for specific mHealth-based interventions. PMID:25789477

  18. Cancer Caregiver: Perceived Benefits of Technology.

    Science.gov (United States)

    Lapid, Maria I; Atherton, Pamela J; Clark, Matthew M; Kung, Simon; Sloan, Jeff A; Rummans, Teresa A

    2015-11-01

    The burden associated with caregiving has been well documented. Caregivers have multiple responsibilities, and technology may be accessible as a potential burden-alleviating resource. We surveyed cancer caregivers regarding current technology use and willingness to use technology for easing burden or distress. Because age has been associated with technology use, responses were compared between geriatric (≥65 years old) and nongeriatric (18-64 years old) caregivers. We had 112 respondents. Based on nonmissing responses, 66% (n=71) were women, 95% (n=106) were white, and 84% (n=91) had post-high school education. Almost all caregivers reported having Internet (105 [94%]) and e-mail (102 [91%]) access. Nongeriatric caregivers indicated more willingness to access Internet-based tools that help caregivers (54 [93%] versus 41 [76%]; p=0.04) and were more frequent users of social media (37 [64%] versus 16 [30%]; p=0.01), smartphones (33 [57%] versus 16 [30%]; p=0.01), and other mobile wireless devices (42 [72%] versus 19 [35%]; p<0.001) than geriatric caregivers. They also more frequently expected technologies to improve their own quality of life (p=0.009), increase their feelings of being effective as a caregiver (p=0.02), and save time (p=0.003). Regardless of age, a majority of caregivers (67 [62%]) endorsed the potential benefit of caregiving technologies in preventing burnout. Most caregivers have high access to and use of technology. Geriatric and nongeriatric caregivers were receptive to technology-based tools to help with their caregiving roles. Although nongeriatric caregivers expected to derive more benefit from such tools, both groups believed that caregiving technologies could reduce burden.

  19. Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application

    Directory of Open Access Journals (Sweden)

    Lane Mariella M

    2005-05-01

    Full Text Available Abstract Health-related quality of life (HRQOL measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. HRQOL measures are also increasingly proposed for use in clinical practice settings to inform treatment decisions. In settings where HRQOL measures have been utilized with adults, physicians report such measures as useful, some physicians alter their treatment based on patient reports on such instruments, and patients themselves generally feel the instruments to be helpful. However, there is a dearth of studies evaluating the clinical utility of HRQOL measurement in pediatric clinical practice. This paper provides an updated review of the literature and proposes a precept governing the application of pediatric HRQOL measurement in pediatric clinical practice. Utilizing HRQOL measurement in pediatric healthcare settings can facilitate patient-physician communication, improve patient/parent satisfaction, identify hidden morbidities, and assist in clinical decision-making. Demonstrating the utility of pediatric HRQOL measurement in identifying children with the greatest needs, while simultaneously demonstrating the cost advantages of providing timely, targeted interventions to address those needs, may ultimately provide the driving force for incorporating HRQOL measurement in pediatric clinical practice.

  20. El impacto de cuidar en la salud y la calidad de vida de las mujeres Impact of caregiving on women's health and quality of life

    Directory of Open Access Journals (Sweden)

    María del Mar García-Calvente

    2004-05-01

    consequences on health and quality of life. Methods: Data from Spain and other neighboring countries obtained from several bibliographic databases, publications, and official reports were gathered. In addition, the results of a home survey conducted by the authors on 1.000 male and female informal caregivers in Andalusia (Spain were used. Results: The studies reviewed demonstrate that women are the main providers of informal care in Spain. Most informal carers are women with a low educational level, without employment and from a low social class. The negative impact of caregiving was noted by a large proportion of carers, especially financial consequences and loss of employment and time. Informal caregiving also has a considerable impact on health, especially on psychological health, and is associated with high levels of burden. Conclusions: The present study demonstrates the need to reorganize health and social policies and to provide sufficient resources to meet the increasing need for informal care and to mitigate the impact and costs of caregiving on diverse aspects of women's lives.

  1. From spouse to caregiver and back

    DEFF Research Database (Denmark)

    Ågård, Anne Sophie; Egerod, Ingrid; Tønnesen, Else

    2015-01-01

    and rehabilitation in general hospital wards, rehabilitation facilities and at home. Consequently, millions of spouses become informal caregivers. Little is known, however, about the concrete challenges spouses face in post-intensive care unit everyday life. DESIGN: Explorative, qualitative grounded theory study...... their role from spouse to caregiver and back' was identified as the core category of the study. The role shifts progressed in a dynamic process involving four elements: (1) committing to caregiving; (2) acquiring caregiving skills; (3) negotiating level of caregiving and (4) gradually leaving the caregiver...... role. Post-ICU caregiving comprised five patient dimensions: observing, assisting, coaching, advocating and managing activities. CONCLUSIONS: Spouses play a vital and multifaceted role in post-intensive care unit recovery. The findings can inform healthcare professionals in their efforts to prepare...

  2. Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients.

    Science.gov (United States)

    Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong

    2014-05-01

    Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies. A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors. Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors. Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.

  3. Psychological Distress Among Caregivers of Individuals With a Diagnosis of Schizophrenia or Schizoaffective Disorder.

    Science.gov (United States)

    Lerner, Debra; Chang, Hong; Rogers, William H; Benson, Carmela; Lyson, Mercedes C; Dixon, Lisa B

    2018-02-01

    The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates. From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs). Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only. Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.

  4. The daily life of patients with dementia: A comparative study between the information provided by the caregiver and direct patient assessment

    Directory of Open Access Journals (Sweden)

    Lucia Aparecida Bressan

    Full Text Available Abstract The functionality concept is very important, as the diagnosis of dementia presupposes the existence of functional impairment. Instruments assessing functional performance present some limitations. In most cases, the assessment is based on the caregiver's report. Some studies in international literature have evaluated this issue and concluded that a difference exists between the caregiver's report and direct patient assessment. American and European caregivers tend to underestimate the patient's functional limitations. However, this issue has hitherto not been investigated in our context. Objective: To compare the caregiver's information with direct assessment of the patient's performance based on the same functional assessment questionnaire. Methods: Seventy-two patients and caregivers were attended by the Occupational Therapy service of the Behavioral Neurology Outpatient Clinic between 1999 and 2001, 25 of whom fulfilled the inclusion criteria: having a confirmed diagnosis of dementia according to the DSM-IV; having attended three or more return appointments, and where the caregiver belonged to the patient's family nucleus. The remaining subjects were excluded because of non-adherence to treatment or refusal to participate in the study. The Functional Activities Questionnaire by Pfeffer et al., 1982 was applied to patients in a laboratory simulation, while another evaluator interviewed the respective caregivers. The data were analyzed based on the weighted Kappa coefficient, and Wilcoxon test. Results: There were significative differences between caregiver's answers and direct observation of the patient's performance. The information provided by the caregivers proved unreliable since caregivers underestimated the patient's functional capacity.

  5. Emerging Trends in Family Caregiving Using the Life Course Perspective: Preparing Health Educators for an Aging Society

    Science.gov (United States)

    Eifert, Elise K.; Adams, Rebecca; Morrison, Sharon; Strack, Robert

    2016-01-01

    Background: As life expectancy and morbidity related to chronic disease increase, the baby boomers will be called upon to provide care to aging members of their family or to be care recipients themselves. Purpose: Through the theoretical lens of the life course perspective, this review of the literature provides insight into what characteristics…

  6. Positive Aspects of Caregiving and Its Correlates among Caregivers of Bipolar Affective Disorder.

    Science.gov (United States)

    Grover, S; Kate, N; Chakrabarti, S; Avasthi, A

    2017-12-01

    To evaluate the positive aspects of caregiving and its correlates (socio-demographic and clinical variables, caregiver burden, coping, quality of life, psychological morbidity) in the primary caregivers of patients with bipolar affective disorder (BPAD). A total of 60 primary caregivers of patients with a diagnosis of BPAD were evaluated on the Scale for Positive Aspects of Caregiving Experience (SPACE) and the Hindi version of Involvement Evaluation Questionnaire, Family Burden Interview Schedule (FBIS), modified Hindi version of Coping Checklist, shorter Hindi version of the World Health Organization Quality of Life (WHOQOL-BREF), and Hindi translated version of 12-item General Health Questionnaire (GHQ-12). Caregivers of patients with BPAD had the highest mean score in the SPACE domain of Motivation for caregiving role (2.45), followed by Caregiver satisfaction (2.38) and Caregiving personal gains (2.20). The mean score was the lowest for the domain of Self-esteem and social aspect of caring (2.01). In terms of correlations, age of onset of BPAD had a negative correlation with various domains of SPACE. The mean number of total lifetime affective and depressive episodes correlated positively with Self-esteem and social aspect of caring. Caregiver satisfaction correlated negatively with FBIS domains of Disruption of routine family activities, Effect on mental health of others, and subjective burden. Coercion as a coping mechanism correlated positively with domains of Caregiving personal gains, Caregiver satisfaction, and the total score on SPACE. Three (Physical health, Psychological health, Environment) out of 5 domains of the WHOQOL-BREF correlated positively with the total SPACE score. No association was noted between GHQ-12 and SPACE scores. Positive caregiving experience in primary caregivers of patients with BPAD is associated with better quality of life of the caregivers.

  7. Life satisfaction of two-year post-stroke survivors: effects of socio-economic factors, motor impairment, Newcastle stroke-specific quality of life measure and World Health Organization quality of life: bref of informal caregivers in Luxembourg and a rural area in Portugal.

    Science.gov (United States)

    Baumann, Michèle; Lurbe, Kàtia; Leandro, Maria-Engracia; Chau, Nearkasen

    2012-01-01

    Life satisfaction of stroke survivors is known to be associated with socio-economic factors and the survivor's and his/her caregiver's quality of life, but their respective influence remains to be fully elucidated. To analyse the stroke survivors' life satisfaction 2 years after the event and its relationships with quality of life, socio-economic and stroke-related characteristics, and with informal caregivers' life satisfaction and quality of life . Over 18 months, all stroke patients from Luxembourg and north-eastern Portugal who lived at home were identified from the Inspection Générale de la Sécurité Sociale and hospital records, respectively. The clinical diagnosis of cerebrovascular disease was confirmed. We excluded all patients who declared that stroke did not result in neurological impairments at the time of stroke from the statistical analysis. The samples comprised 79 patients in Luxembourg and 48 in Portugal. Patients and the people they identified as their main caregivers were interviewed using validated questionnaires measuring life satisfaction, i.e. the Newcastle Stroke-Specific Quality of Life (Newsqol - 11 subscales), which identifies the areas affected by stroke among patients, and the World Health Organization Quality of Life - bref (Whoqol-bref - 4 subscales) of informal caregivers. Survivors without neurological impairment at the time of stroke were excluded. Data were analysed via multiple-regression models. Life satisfaction was higher among women and lower among subjects with impaired motor functions. It was lower among Portuguese respondents with low-level education (life satisfaction than did working people (-7.9/100). Controlling for socio-economic factors, life satisfaction was associated with feelings- Newsqol (slope 0.25) among Luxembourg residents, and with feelings-, mobility- and self-care-Newsqol (slopes 0.24, 0.27 and 0.33, respectively) among Portuguese respondents. Life satisfaction of patients was strongly related to that

  8. Palliative and end-of-life care for adults with advanced chronic obstructive pulmonary disease: a rapid review focusing on patient and family caregiver perspectives.

    Science.gov (United States)

    Mathews, Gillian; Johnston, Bridget

    2017-12-01

    The aim of the review was to explore patient and family caregiver perspectives on key issues for ensuring quality of end-of-life care for people with chronic obstructive pulmonary disease (COPD). The growing evidence on the value of specialist palliative care services demonstrates significant improvements in treatments and provisions; however, much of the literature is generic in nature or centred on people with a cancer diagnosis. In this review, we examine the literature to ascertain the views and needs of patients and carers affected by advanced COPD, a highly debilitating condition that can have a profoundly negative impact on the quality of end-of-life experience. A total of 19 papers were included in the review. The main themes in the literature were Holistic Care, Illness Trajectory and Technology. Areas of unmet need emphasized across physical, psychosocial and spiritual domains were identified, particularly in relation to appropriate and timely conversations. Positive developments in the care and treatment of advanced COPD include the use of the STIOLTO Respimat inhaler, a brief educative and psychosocial intervention based on cognitive-behavioural therapy, and high-intensity exercise training. There is some evidence regarding the use of technology in end-stage COPD.

  9. Correlation Between Stress and Quality of Life Experienced by Caregivers: Perception of a Group of Healthcare Professionals.

    Science.gov (United States)

    Silva, Bhárbara Karolline Rodrigues; Quaresma, Fernando Rodrigues Peixoto; Maciel, Erika da Silva; Figueiredo, Francisco Winter Dos Santos; Sarraf, Jonathan Souza; Adami, Fernando

    2017-01-01

    This study aims to evaluate the relationship between perceived level of stress and quality of life of professionals working in Prompt Service Units in the city of Palmas, Tocantins. A cross-sectional study was performed among 164 professionals from Prompt Service Units. Stress levels were evaluated using the Perceived Stress Scale. The WHOQOL-bref was used to evaluate the perception of quality of life. Quantitative variables distribution was evaluated using Shapiro-Wilk's test. For the analyses of correlations among perceived level of stress, total quality of life score, and the physical health domain of the WHOQOL-bref, Pearson's correlation test was applied. The significance level adopted for this trial was 95%. The study was approved by the Committee of Ethics in Research with Human Beings. When assessing the perceived level of stress with the total quality of life score, there was no significant correlation between those variables. However, there was an association between the perceived level of stress and the physical health domain of quality of life. Perceived quality of life was correlated with the physical health domain, and this result reinforces the importance of the facets that make up this area.

  10. Role of caregiver-reported outcomes in identification of children with prenatal alcohol exposure during the first year of life.

    Science.gov (United States)

    Bakhireva, Ludmila N; Lowe, Jean; Garrison, Laura M; Cano, Sandra; Leyva, Yuridia; Qeadan, Fares; Stephen, Julia M

    2018-05-16

    BackgroundEarlier identification of children with prenatal alcohol exposure (PAE) remains a challenge. The objective of this study was to identify neurobehavioral (NB) outcomes associated with PAE in infants.MethodsThis manuscript evaluates NB outcomes at 6.33±1.12 months of age in 93 infants (39 PAE and 54 No-PAE) recruited prospectively into the ENRICH cohort. PAE was assessed by prospective repeated TLFB interviews and a panel of ethanol biomarkers. NB outcomes were evaluated by the Bayley Scales of Infant Development (BSID-III), Parenting Stress Index (PSI), Infant Behavior Questionnaire (IBQ-R), and Infant Sensory Profile (ISP).ResultsMean maternal age at enrollment was 28.18±5.75, and 64.52% were Hispanic/Latina. Across three TLFB calendars, absolute alcohol per day in the PAE group was 0.44±0.72, corresponding to low-moderate alcohol consumption. While no association was observed between PAE and BSID-III (P's>0.05), PAE was associated with higher scores on the PSI difficult child scale (=13.9; P=0.015), total stress (=13.9; P=0.010), and IBQ negative affect (=8.60; P=0.008) measures after adjustment for covariates.ConclusionsCaregiver-reported assessments may provide a currently unrecognized opportunity to identify behavioral deficits, point to early interventions, and should be included in clinical assessments of infants at-risk for fetal alcohol spectrum disorder.Pediatric Research advance online publication, 16 May 2018; doi:10.1038/pr.2018.26.

  11. Family caregivers of patients with frontotemporal dementia: An integrative review.

    Science.gov (United States)

    Caceres, Billy A; Frank, Mayu O; Jun, Jin; Martelly, Melissa T; Sadarangani, Tina; de Sales, Paloma Cesar

    2016-03-01

    The purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers' health and well-being, and (3) identify coping strategies used by family caregivers. Frontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia. An integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles. Findings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful. Family caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique

  12. Impacto del cuidado informal en la salud y la calidad de vida de las personas cuidadoras: análisis de las desigualdades de género Impact of informal caregiving on caregivers' health and quality of life: analysis of gender inequalities

    Directory of Open Access Journals (Sweden)

    Isabel Larrañaga

    2008-10-01

    differs by sex. Methods: A descriptive study was carried out based on the Basque Health Survey 2002. Physical and mental health, use of health services, social health and health related quality of life (HRQL indicators were compared in caregivers (n = 836 and non-caregivers (n = 5,706. Age-adjusted logistic regression models were calculated to assess the association between the caregiver and effects on health by sex, socioeconomic position and occupational status. Results: Female caregivers showed worse results in 6 out of 10 indicators compared with non-caregiver women, whereas male caregivers showed worse results in only four indicators compared with non-caregiving men. The associations between caregiving (caregiving vs. non-caregiving and health results were stronger in women than in men, except in social health. When caregiving burden intensity was considered, greatly burdened men showed a similar or higher risk of poor HRQL (physical in men: OR = 3.0, CI95%: 1.4-6.3; women: OR = 2.3, CI95%: 1.5-3.5; mental in men: OR = 2.5, CI95%: 1.4-4.3; women: OR = 2.5, CI95%: 1.7-3.7 and low social support (affective support in men: OR = 2.6, CI95%: 1.5-4.6; women: OR = 1.5, CI95%: 1.0-2.3. However, the risk of sedentariness, lack of sleep, greater use of health services and mental ill-health remained higher for women caregivers. Conclusions: Caregiving damages the health of informal caregivers but the risks for female caregivers are higher due to greater intensity of caregiver burden. As men's caregiving burden increases, gender inequalities decrease or invert.

  13. Caregiving and travel patterns.

    Science.gov (United States)

    2013-06-01

    This study explored the impact of caregiving for older adults on mobility and travel : patterns. Specifically, the focus was on how caregivers managed trips on behalf of : another who receives care. Caregiving is becoming increasingly common as the :...

  14. Late-Stage Caregiving

    Science.gov (United States)

    ... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

  15. Middle-State Caregiving

    Science.gov (United States)

    ... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

  16. Early-Stage Caregiving

    Science.gov (United States)

    ... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

  17. Family Caregiver Alliance

    Science.gov (United States)

    ... on your schedule. Look for our launch soon! FAMILY CARE NAVIGATOR ─ Click on Your State AL AK ... AiA18 Smart Patients Caregivers Community In partnership with Family Caregiver Alliance Learn more Caregiver Research Studies show ...

  18. Family caregiving in bipolar disorder: caregiver consequences, caregiver coping styles, and caregiver distress.

    NARCIS (Netherlands)

    Goossens, P.J.J.; Wijngaarden, B. van; Knoppert-van der Klein, E.A.M.; Achterberg, T. van

    2008-01-01

    AIMS: This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles. METHODS: Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers'

  19. Comparison of Quality of Life Perceptions of Caregivers of Individuals with Intellectual Disabilities in the United States and the Czech Republic

    Science.gov (United States)

    Raver, Sharon A.; Michalek, Anne M.; Michalik, Jan; Valenta, Milan

    2010-01-01

    Caregivers of individuals with disabilities in the United States have been reported to experience additional hardships than families with typical children as they attempt to balance family and work (Parish, Rose, Grinstein-Weiss, Richman, & Andrews, 2008). In this study, 31 caregivers of individuals with intellectual disabilities from the…

  20. What Knowledge and Skills Do Caregivers Need?

    Science.gov (United States)

    Given, Barbara; Sherwood, Paula R.; Given, Charles W.

    2008-01-01

    Patients with chronic illnesses and multiple comorbid conditions have intricate treatment protocols that require caregiver involvement, further complicating this already-difficult care. Because better treatments have extended the life spans of most patients with chronic illnesses, caregiver involvement often is required for several years. Many…

  1. Life-resistant housing - home automation through the eyes of the caregiver : what opportunities do caregivers see for the use of home automation in order to support independent living for the elderly?

    NARCIS (Netherlands)

    Oppewal-Raadsveld, Betty

    Design and outcomes of research regarding the question which changes in the field of housing and healthcare technology would, according to caregivers, enable people over 50 in shrinking areas in The Northern Netherlands to continue living in their own homes as long as possible.

  2. Family caregiver communication in oncology: advancing a typology.

    Science.gov (United States)

    Goldsmith, Joy; Wittenberg, Elaine; Platt, Christine Small; Iannarino, Nicholas T; Reno, Jenna

    2016-04-01

    The quality of communication between the patient and family caregiver impacts quality of life and well-being for the two; however, providers have few tools to understand communication patterns and assess the communication needs and preferences of caregivers. The aims of this study were to examine family communication patterns among oncology patients and their caregivers and to identify common characteristics among four different types of family caregivers. Nurses recruited oncology patient-caregiver dyads through a large cancer treatment center in the Southeast. Patients and caregivers were separated from one another and interviewed during chemotherapeutic infusions. Interviews were recorded, transcribed, coded, and thematized. A sample of 24 patients and their caregivers (n = 48) were interviewed. The majority of dyads (21, 88%) shared the same family communication pattern. Common caregiver communication features support previous work identifying four caregiver communication types: Manager, Carrier, Partner, and Lone caregivers. Manager caregivers lead patients by utilizing extensive medical knowledge, whereas Carrier caregivers were led by patients and described tireless acts to maintain the family and avoid difficult conversations. Partner caregivers facilitated family involvement and open communication on a variety of topics, while Lone caregivers focused solely on biomedical matters and a hope for cure. Caregiver communication types were corroborated by patient-caregiver descriptions of caregiving. However, more information is needed to ascertain the variables associated with each caregiver type. Future work to improve identification of caregiver types and create targeted caregiver care plans will require further study of health literacy levels and tested communication interventions per type. Copyright © 2015 John Wiley & Sons, Ltd.

  3. Using the life course perspective to study the entry into the illness trajectory: The perspective of caregivers of people with Alzheimer’s disease

    Science.gov (United States)

    Carpentier, Normand; Bernard, Paul; Grenier, Amanda; Guberman, Nancy

    2016-01-01

    The research community is showing increasing interest in the analysis of the care trajectory of people with chronic health problems, especially dementias such as Alzheimer’s disease. However, despite this interest, there is little research on the initial phases of the care trajectory. The fact that the first symptoms of dementia are generally noticed by those surrounding the elderly person suggests that the recognition of the disease is intimately linked to interactions not only amongst family members but also amongst friends, neighbours and health professionals. This study focuses on the period beginning with the first manifestations of cognitive difficulties and ending with the diagnosis of Alzheimer-type dementia. Interviews with 60 caregivers in Montreal, Canada were used to reconstruct how older people with Alzheimer-type dementia enter into the care trajectory. Our methods consisted of the analysis of social networks, social dynamics and action sequences. Our findings are presented in the form of a typology comprised of 5 pathways of entries into the care trajectory that are structured around the following four principles of the Life Course Perspective: family history, linked lives, human agency and organisational effects. We believe that analyses of the initial phases of the care trajectory, such as this one, are essential for the application of effective early detection and intervention policies. They are also central to informing future studies that seek to understand the care experience in its entirety. PMID:20207459

  4. Stressors, Appraisal of Stressors, Experienced Stress and Cardiac Response: A Real-Time, Real-Life Investigation of Work Stress in Nurses.

    Science.gov (United States)

    Johnston, Derek; Bell, Cheryl; Jones, Martyn; Farquharson, Barbara; Allan, Julia; Schofield, Patricia; Ricketts, Ian; Johnston, Marie

    2016-04-01

    Stress in health care professionals may reflect both the work and appraisal of work and impacts on the individuals, their patients, colleagues and managers. The purpose of the present study is to examine physiological and psychological effects of stressors (tasks) and theory-based perceptions of work stressors within and between nurses in real time. During two work shifts, 100 nurses rated experienced stress, affect, fatigue, theory-based measures of work stress and nursing tasks on electronic diaries every 90 min, whereas heart rate and activity were measured continuously. Heart rate was associated with both demand and effort. Experienced stress was related to demand, control, effort and reward. Effort and reward interacted as predicted (but only within people). Results were unchanged when allowance was made for work tasks. Real-time appraisals were more important than actual tasks in predicting both psychological and physiological correlates of stress. At times when effort was high, perceived reward reduced stress.

  5. The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives

    OpenAIRE

    Roberts, Emily; Struckmeyer, Kristopher M.

    2018-01-01

    Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, m...

  6. Caregiver reports of patient-initiated violence in psychosis.

    Science.gov (United States)

    Onwumere, Juliana; Grice, Sarah; Garety, Philippa; Bebbington, Paul; Dunn, Graham; Freeman, Daniel; Fowler, David; Kuipers, Elizabeth

    2014-07-01

    Aggressive behaviour in psychosis is not uncommon. Community provision for people with psychosis has left informal caregivers to take on a greater role in their care. However, few studies have explored links between patient-initiated violence in mental health caregiving relationships and caregiver functioning. Our study investigated caregiver reports of aggressive acts committed by their relative with psychosis and their links to caregiver appraisals of the caregiving relationship and caregiver outcomes. Caregivers of patients with a recent relapse of psychosis, recruited to a psychological therapy trial, completed the audiotaped Camberwell Family Interview at baseline. This semi-structured interview includes questions on the quality of the relationship between caregiver and patient, and patient history of violence. Seventy-two transcripts of interviews were assessed for reports of patient-initiated violence. One-half of the caregiver sample (52.9%) reported an incident of patient-initiated violence during their interview; 62.2% of these involved violence toward themselves, and 24.3% toward property. Reports of patient violence were associated with caregiver ratings of hostility expressed toward patients, lower self-esteem, and emotion-focused coping. People caring on their own were more likely to report incidents of patient violence. Younger patients, males, and inpatients were more frequently identified as having a history of this kind of violence. Our findings suggested that caregiver reports of patient-initiated violence in psychosis are not uncommon. Mental health staff need to be aware of the risks of such violence for caregivers of people with psychosis, and consider appropriate procedures for minimizing it.

  7. Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients.

    Science.gov (United States)

    Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee

    2014-10-01

    Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being. Copyright © 2014 John Wiley & Sons, Ltd.

  8. Improving patient experience in a pediatric ambulatory clinic: a mixed method appraisal of service delivery

    Directory of Open Access Journals (Sweden)

    Soeteman M

    2015-03-01

    Full Text Available Marijn Soeteman,1 Vera Peters,2 Jamiu O Busari1,3 1Department of Pediatrics, Atrium Medical Center, Heerlen, 2Faculty of Health, Medicine and Life Sciences, 3Department of Educational Development and Research, Faculty of Health, Medicine and Life Sciences, University of Maastricht, Maastricht, the Netherlands Objective: In 2013, customer satisfaction surveys showed that patients were unhappy with the services provided at our ambulatory clinic. In response, we performed an appraisal of our services, which resulted in the development of a strategy to reduce waiting time and improve quality of service. Infrastructural changes to our clinic’s waiting room, consultation rooms, and back offices were performed, and schedules were redesigned to reduce wait time to 10 minutes and increase consultation time to 20 minutes. Our objective was to identify if this would improve 1 accessibility to caregivers and 2 quality of service and available amenities. Design: We conducted a multi-method survey using 1 a patient flow analysis to analyze the flow of service and understand the impact of our interventions on patient flow and 2 specially designed questionnaires to investigate patients’ perceptions of our wait time and how to improve our services. Results: The results showed that 79% of our respondents were called in to see a doctor within 20 minutes upon arrival. More patients (55% felt that 10–20 minutes was an acceptable wait time. We also observed a perceived increase in satisfaction with wait time (94%. Finally, a large number of patients (97% were satisfied with the quality of service and with the accessibility to caregivers (94%. Conclusion: The majority of our patients were satisfied with the accessibility to our ambulatory clinics and with the quality of services provided. The appraisal of our operational processes using a patient flow analysis also demonstrated how this strategy could effectively be applied to investigate and improve quality of

  9. The balance of give and take in caregiver-partner relationships: An examination of self-perceived burden, relationship equity, and quality of life from the perspective of care recipients following stroke.

    Science.gov (United States)

    McPherson, Christine J; Wilson, Keith G; Chyurlia, Livia; Leclerc, Charles

    2010-05-01

    We examined the sense of being a burden to others or self-perceived burden (SPB) in people with stroke. A mail survey was completed by 57 former inpatients and their partner caregivers. The care recipient survey included measures of functional status, quality of life, marital satisfaction, equity in the relationship, and psychological distress, as well as SPB using the Self-Perceived Burden Scale (SPBS; Cousineau, McDowell, Hotz, & Hébert, 2003). The caregiver survey included similar measures in addition to a caregiver burden measure. SPB was found to be a prevalent and distressing concern. SPBS scores correlated with measures of functional status and mood; however, the correlations were highest for measures of family roles and work/productivity. Using equity theory as a basis to examine the SPB construct, care recipients who perceived themselves as overbenefiting from the relationship had significantly higher SPB scores than those whose relationship was viewed as equitable or underbenefiting. For some receiving care from a partner after stroke is associated SPB. This sense of burden is related to changes in help-seeking behavior, quality of life, and distress.

  10. A randomised controlled trial of benefit finding in caregivers: The Building Resources in Caregivers Study Protocol

    Directory of Open Access Journals (Sweden)

    Charles Brand

    2015-07-01

    Full Text Available Caregivers may engage in benefit finding, that is, an increase in perceived positive growth, as a cognitive strategy for coping with stress. The Building Resources in Caregivers study will compare effects of a brief benefit finding writing intervention with a control intervention. Caregivers of people with mental and physical disabilities will be randomised into either a benefit-writing group or a neutral writing group. Caregivers will complete measures relating to themselves and care-recipients (e.g. sociodemographics and illness type and psychometric measures of benefit finding, distress and quality of life at three time points. Additionally, qualitative commentary on participation experiences will be gathered.

  11. Life satisfaction two-years after stroke onset: the effects of gender, sex occupational status, memory function and quality of life among stroke patients (Newsqol and their family caregivers (Whoqol-bref in Luxembourg

    Directory of Open Access Journals (Sweden)

    Baumann Michèle

    2012-09-01

    Full Text Available Abstract Background Life satisfaction (LS of cerebrovascular disease survivors and their family caregivers may relate to socioeconomic factors, impaired functions, health-related quality of life (QoL, but their respective influences remain unclear. This study assessed, two years post-stroke onset, the effects of these factors on patients’ LS and family caregivers’ LS in Luxembourg. Methods All stroke patients admitted to all hospitals in Luxembourg were identified by the ‘Inspection Général de la Sécurité Sociale’ using the only national system database for care expenditure reimbursement. Their diagnosis was confirmed by medical investigator. The sample included ninety four patients living at home having given consent (mean age 65.5 years and sixty two main caregivers (mean age 59.3 years. Questionnaires were completed during face-to-face interviews. LS was assessed via European single question (range 1–10, survivors’ QoL via Newsqol (11 dimensions, and caregivers’ QoL via Whoqol-bref (4 domains (range 0–100. Data were analysed using multiple regression models. Results Two years after stroke onset, 44.7% of patients suffered from impaired sensory function, 35.1% from impaired motor function, and 31.9% from impaired memory function. Mean patient’ LS was 7.1/10 (SD 1.9. It was higher in women (+12.4 and lower among unemployed socioeconomically active patients (−13.1, vs. retired people. Adjusted for sex, occupation, impaired motor and memory functions, LS positively correlated with scores of Newsqol feelings, sleep, emotion, cognition and pain dimensions (slopes 0.20 to 0.31, but did not correlate with those of caregivers’ Whoqol-bref domains. Family caregiver’ LS was 7.2 (SD 1.7. It was lower in those with patients suffering from impaired memory function (−12.8 as well as from feelings and emotion issues (slopes 0.22. It was associated with all caregivers’ Whoqol-bref domains (physical health, psychological health

  12. Caregivers' resilience is independent from the clinical symptoms of dementia.

    Science.gov (United States)

    Dias, Rachel; Simões-Neto, José Pedro; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Baptista, Maria Alice Tourinho; Lacerda, Isabel Barbeito; Kimura, Nathalia Ramos Santos; Dourado, Marcia Cristina Nascimento

    2016-12-01

    Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers' resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver's gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver's quality of life (p caregivers' resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.

  13. Cuidadores de crianças com câncer: aspectos da vida afetados pela atividade de cuidador Cuidantes de niños con cáncer: aspectos de la vida afectados por la actividad de cuidar Caregivers of children with cancer: aspects of life affectcet by the caregiver role

    Directory of Open Access Journals (Sweden)

    Ana Raquel Medeiros Beck

    2007-12-01

    Full Text Available Pretendeu-se, neste estudo, descrever como as atividades relacionadas ao cuidar afetam a vida de cuidadores de crianças com câncer, o grau de dependência da criança para desempenhar as atividades de vida diária (AVD, o grau de ajuda recebida de outros e o quanto alguns aspectos da vida do cuidador são afetados pela atividade de cuidar. O estudo foi descritivo, comparativo e transversal. Foram entrevistados 50 cuidadores de crianças entre três e dez anos num hospital infantil, referência no tratamento de doenças onco-hematológicas, em Campinas, SP. As atividades relacionadas ao cuidar ocasionaram sérios prejuízos na vida dos cuidadores. Portanto, avaliar estes aspectos pode auxiliar o enfermeiro a evidenciar, amenizar e planejar a assistência aos cuidadores de crianças com câncer.Se pretendió en este estudio describir de que forma las actividades relacionadas al cuidar afectan la vida de los cuidantes de niños con cáncer, el grado de dependencia del niño para desempeñar las actividades de la vida diaria (AVD, el grado de ayuda recibida de otros, y en que medida algunos aspectos da la vida del cuidante eran afectados por la actividad de cuidar. El estudio fué descriptivo, comparativo y transversal. Fueron entrevistados 50 cuidantes de niños entre 3 y 10 años en un hospital infantil modelo en el tratamiento de dolencias onco-hematológicas, en Campinas, SP. Las actividades relacionadas al cuidar ocasionaron serios daños en la vida de los cuidantes. Por lo tanto, evaluar estos aspectos puede auxiliar al enfermero a identificar, amenizar y planear la asistencia a los cuidantes de niños con cáncer.This study aimed at demonstrating that the caregiving role affected the lives of caregivers of children with cancer, the child's degree of dependence regarding the performance of daily life activities (DLA, the degree of help offered by others and the degree to which some aspects of the caregiver's life were affected by caregiving

  14. Double- and Triple-Duty Caregiving Men: An Examination of Subjective Stress and Perceived Schedule Control.

    Science.gov (United States)

    DePasquale, Nicole; Zarit, Steven H; Mogle, Jacqueline; Moen, Phyllis; Hammer, Leslie B; Almeida, David M

    2018-04-01

    Based on the stress process model of family caregiving, this study examined subjective stress appraisals and perceived schedule control among men employed in the long-term care industry (workplace-only caregivers) who concurrently occupied unpaid family caregiving roles for children (double-duty child caregivers), older adults (double-duty elder caregivers), and both children and older adults (triple-duty caregivers). Survey responses from 123 men working in nursing home facilities in the United States were analyzed using multiple linear regression models. Results indicated that workplace-only and double- and triple-duty caregivers' appraised primary stress similarly. However, several differences emerged with respect to secondary role strains, specifically work-family conflict, emotional exhaustion, and turnover intentions. Schedule control also constituted a stress buffer for double- and triple-duty caregivers, particularly among double-duty elder caregivers. These findings contribute to the scarce literature on double- and triple-duty caregiving men and have practical implications for recruitment and retention strategies in the health care industry.

  15. Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

    Science.gov (United States)

    Carney, Sile; Corr, Bernie; Mays, Iain; Pender, Niall; Hardiman, Orla

    2018-01-01

    Objectives Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Setting and participants Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. Results The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ‘nothing’. Themes were interconnected and their prevalence varied across the interview time points. Conclusion This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12–18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions

  16. Physician Appraisals: Key Challenges

    Directory of Open Access Journals (Sweden)

    Klich Jacek

    2017-06-01

    Full Text Available The main purpose of the article is to identify key criteria being used for physician appraisals and to find how communication skills of physicians are valued in those appraisals. ScienceDirect and EBSCOhost databases were used for this search. The results show that a physician appraisal is underestimated both theoretically and empirically. The particular gap exists with respect to the communication skills of physicians, which are rarely present in medical training syllabi and physician assessments. The article contributes to the theoretical discourse on physician appraisals and points out at the inconsistency between the high status of physicians as a key hospital resource on the one hand and, on the other hand, at inadequate and poorly researched assessment of their performance with a special emphasis on communication skills. The article may inspire health managers to develop and implement up-to-date assessment forms for physicians and good managerial practices in this respect in hospitals and other health care units.

  17. Caregiver wellbeing: an examination of the coping-appraisel process of caring for individuals with an acquired brain injury

    LENUS (Irish Health Repository)

    2011-12-09

    Objective: Previous literature has demonstrated empirical support for a stress process model of caregiving (Chronister & Chan, 2006). This study examined whether a coping–appraisal stress model helps in our understanding of the experience of caregiving for people with an acquired brain injury.\\r\

  18. Caregiving Statistics

    Science.gov (United States)

    ... have had to make some adjustments to their work life, from reporting late to work to giving up ... it increases moral and 39% believe it increases productivity. Job-based Health Insurance in the Balance: Employer Views of Coverage in the Workplace. Collins, S. ...

  19. 12 CFR 564.5 - Appraiser independence.

    Science.gov (United States)

    2010-01-01

    ... 12 Banks and Banking 5 2010-01-01 2010-01-01 false Appraiser independence. 564.5 Section 564.5 Banks and Banking OFFICE OF THRIFT SUPERVISION, DEPARTMENT OF THE TREASURY APPRAISALS § 564.5 Appraiser independence. (a) Staff appraisers. If an appraisal is prepared by a staff appraiser, that appraiser must be...

  20. Qualidade de vida de cuidadores de idosos com doença de Alzheimer Calidad de vida de cuidadores de ancianos con enfermedad de Alzheimer Quality of life among caregivers of elders with Alzheimer's disease

    Directory of Open Access Journals (Sweden)

    Meiry Fernanda Pinto

    2009-10-01

    (MEEM. Los datos del cuidador, obtenidos por cuestionarios, fueron el SF - 36 y el Inventario de Depresión de Beck (IDB. RESULTADOS: Los escores más comprometidos del SF -36 de los cuidadores fueron: vitalidad (56,8 y los físicos y emocionales con 58,1, respectivamente. Hubo correlación negativa entre el IDB del cuidador y el índice de Katz de los pacientes; entre el SF - 36 y el IDB y las correlaciones positivas entre los escores del SF -36 e Índice de Katz y entre los dominios de este índice y los escores del MEEM. CONCLUSIÓN: La calidad de vida de los cuidadores de pacientes con DA se mostró alterada, pudiendo comprometer los cuidados prestados por ellos y, evidenció desmejoramiento cuando la capacidad funcional del anciano estuvo más comprometida.OBJECTIVES: To evaluate quality of life among caregivers of elders with Alzheimer's disease and to examine the relationship between patients' quality of life score measured with the Katz Quality of Life Index and the relationship between the caregivers' quality of life measured with the SF-36 and depression score measured with the Beck Depression Inventory (BDI. METHODS: This study was conducted in a geriatric clinic (Núcleo de Envelhecimento Cerebral of the São Paulo Hospital of the Federal University of São Paulo. The sample consisted of 118 patients with Alzheimer's disease and their caregivers. Sociodemographic and cormobidity data and the Katz score of quality of life and the mini-mental status examination (MMSE score of the patients with Alzheimer's disease were obtained through chart review. Data from caregivers comprised sociodemographic and comorbidity data and the SF-36 score of quality of life and the BDI score of depression. RESULTS: SF-36 scores that were indicative of depression among caregivers were vitality (score = 56.8 and the scores on physical and emotional components were = 58.1, respectively. There was a significantly negative correlation between the caregivers' BDI score and the patients

  1. Caregiver Health and Wellness

    Science.gov (United States)

    ... pain and headaches Stress and depression As a caregiver, what can I do to take care of my ... caregiving. Accept that there is a limit to what you can do as a caregiver. Recognize when you feel overwhelmed or are physically ...

  2. Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS).

    Science.gov (United States)

    Lutomski, J E; van Exel, N J A; Kempen, G I J M; Moll van Charante, E P; den Elzen, W P J; Jansen, A P D; Krabbe, P F M; Steunenberg, B; Steyerberg, E W; Olde Rikkert, M G M; Melis, R J F

    2015-05-01

    Validity is a contextual aspect of a scale which may differ across sample populations and study protocols. The objective of our study was to validate the Care-Related Quality of Life Instrument (CarerQol) across two different study design features, sampling framework (general population vs. different care settings) and survey mode (interview vs. written questionnaire). Data were extracted from The Older Persons and Informal Caregivers Minimum DataSet (TOPICS-MDS, www.topics-mds.eu ), a pooled public-access data set with information on >3,000 informal caregivers throughout the Netherlands. Meta-correlations and linear mixed models between the CarerQol's seven dimensions (CarerQol-7D) and caregiver's level of happiness (CarerQol-VAS) and self-rated burden (SRB) were performed. The CarerQol-7D dimensions were correlated to the CarerQol-VAS and SRB in the pooled data set and the subgroups. The strength of correlations between CarerQol-7D dimensions and SRB was weaker among caregivers who were interviewed versus those who completed a written questionnaire. The directionality of associations between the CarerQol-VAS, SRB and the CarerQol-7D dimensions in the multivariate model supported the construct validity of the CarerQol in the pooled population. Significant interaction terms were observed in several dimensions of the CarerQol-7D across sampling frame and survey mode, suggesting meaningful differences in reporting levels. Although good scientific practice emphasises the importance of re-evaluating instrument properties in individual research studies, our findings support the validity and applicability of the CarerQol instrument in a variety of settings. Due to minor differential reporting, pooling CarerQol data collected using mixed administration modes should be interpreted with caution; for TOPICS-MDS, meta-analytic techniques may be warranted.

  3. Palliative Care Intervention in Improving Symptom Control and Quality of Life in Patients With Stage II-IV Non-small Cell Lung Cancer and Their Family Caregivers

    Science.gov (United States)

    2017-10-16

    Caregiver; Psychological Impact of Cancer and Its Treatment; Recurrent Non-small Cell Lung Cancer; Stage IIA Non-small Cell Lung Cancer; Stage IIB Non-small Cell Lung Cancer; Stage IIIA Non-small Cell Lung Cancer; Stage IIIB Non-small Cell Lung Cancer; Stage IV Non-small Cell Lung Cancer

  4. Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training

    NARCIS (Netherlands)

    Kristanti, M.S.; Setiyarini, S.; Effendy, C.

    2017-01-01

    BACKGROUND: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family

  5. Wellbeing Perception of Institutional Caregivers Working for People with Disabilities: Use of Subjective Happiness Scale and Satisfaction with Life Scale Analyses

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Pei-Ying; Wu, Chia-Ling

    2010-01-01

    Little scientific research has focused on the measure of how positive wellbeing of people caring for people with disabilities. The purposes of the present study are to explore the wellbeing perception and its determinants of caregivers who caring for people with disability. We employed a cross-sectional, self-administrative structured…

  6. Measuring care-related quality of life of caregivers for use in economic evaluations: CarerQol tariffs for Australia, Germany, Sweden, the UK and the US.

    NARCIS (Netherlands)

    Hoefman, R.J.; Exel, N.J.A. van; Brouwer, W.B.F.

    2017-01-01

    Background: Informal care is often not included in economic evaluations in healthcare, while the impact of caregiving can be relevant for cost-effectiveness recommendations from a societal perspective. The impact of informal care can be measured and valued with the CarerQol instrument, which

  7. Caregiving and Its Resulting Effects—The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore

    Directory of Open Access Journals (Sweden)

    Cheryl Kai Ting Chua

    2016-11-01

    Full Text Available Informal caregivers (IC are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL, mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI, Caregiver Quality of Life Index—Cancer (CQOLC, Center for Epidemiologic Studies Depression Scale—Revised (CESD-R, and Work Productivity and Activity Impairment Questionnaire (WPAI were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%, and eight ICs had high burden (ZBI > 17. Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

  8. Caregiving and Its Resulting Effects-The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore.

    Science.gov (United States)

    Chua, Cheryl Kai Ting; Wu, Jun Tian; Wong, Yin Yee; Qu, Limin; Tan, Yung Ying; Neo, Patricia Soek Hui; Pang, Grace Suyin

    2016-11-15

    Informal caregivers (IC) are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL), mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI), Caregiver Quality of Life Index-Cancer (CQOLC), Center for Epidemiologic Studies Depression Scale-Revised (CESD-R), and Work Productivity and Activity Impairment Questionnaire (WPAI) were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%), and eight ICs had high burden (ZBI > 17). Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making) and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

  9. Calidad de Vida de Cuidadores de Pacientes Hospitalizados, nivel de dependencia y red de apoyo Quality of life for caregivers of patients hospitalized level of dependence and support network

    Directory of Open Access Journals (Sweden)

    Liliana Covarrubias Delgado

    2012-09-01

    Full Text Available Objetivo: Determinar la Calidad de Vida de Cuidadores de Pacientes Hospitalizados y la relación al Nivel de Dependencia y Red de Apoyo. Metodología: Estudio descriptivo correlacional, muestra de 106 cuidadores de pacientes hospitalizados en un Hospital público de San Luis Potosí, seleccionados por muestreo no probabilístico por conveniencia. Se aplicó el Instrumento Calidad de Vida del Cuidador Informal, Índice Katz, y el coeficiente de correlación Pearson como prueba hipótesis. Resultados: Predominaron mujeres cuidadoras cuya edad promedio fue 42 años, casadas, escolaridad primaria, ocupación en labores del hogar, parentesco de hijas, esposas y madres. Los hombres cuidadores en menor proporción, cuidaban a hijos o esposa; los receptores del cuidado en su mayoría fueron hombres con edad promedio de 55 años, predominaron los totalmente dependientes. La calidad de vida fue alta, pero en el indicador relaciones interpersonales con familiares y amigos presentaron nivel medio y bajo; se encontró relación estadísticamente significativa entre calidad de vida media, dependencia moderada y dependencia leve. Conclusiones: Existen repercusiones en la calidad de vida de los cuidadores en aspectos emocionales y sociales debido a modificaciones del entorno y organización de actividades diarias y el cuidado, se refleja separación de amistades debido a dedicación a esta tarea, destaca la familia como apoyo principal.Objective: to determine the quality of life for caregivers of patients hospitalized and the relationship to the level of dependence and Support Network. Methods: Study descriptive correlational, shows 106 caregivers of patients hospitalized in a public hospital in San Luis Potosi selected by non-probabilistic sampling, the instrument was administered Quality of Life of the informal caregivers, Index Katz, and the correlation coefficient Pearson as test hypotheses. Results: Predominated women caregivers whose average age was 42

  10. Well-being of Sibling Caregivers: Effects of Kinship Relationship and Race.

    Science.gov (United States)

    Namkung, Eun Ha; Greenberg, Jan S; Mailick, Marsha R

    2017-08-01

    This study examined whether caregiving has a differential effect on the well-being of sibling caregivers relative to other caregiving groups and whether race moderates this effect. Using the National Survey of Midlife Development in the United States, 631 family caregivers (including 61 sibling caregivers) and 4,944 noncaregivers were identified. Hierarchical regression analyses were conducted to estimate the effect of the caregiver-care recipient relationship and its interaction with race on caregivers' well-being (i.e., depressive symptoms, self-rated health, life satisfaction, and perceived control over life). Caregivers in general reported poorer well-being than noncaregivers, but sibling caregivers were less affected by caregiving than parent or spouse caregivers. Among sibling caregivers, caregiving took a significantly greater toll on non-Hispanic White caregivers than those from minority groups with respect to depressive symptoms and life satisfaction. The findings suggest that the experience of sibling caregivers is significantly shaped by their cultural background. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  11. Caregiver burden in Alzheimer's disease: Moderation effects of social support and mediation effects of positive aspects of caregiving.

    Science.gov (United States)

    Wang, Zhixin; Ma, Caiyun; Han, Hongjuan; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei

    2018-06-01

    Although there are many studies on the relationship between patient-related factors and negative caregiver outcomes, the specifics of this relationship are poorly understood. We aimed to examine whether caregiver social support moderated the relationship between patient factors and negative outcomes for caregivers of community-dwelling older adults with Alzheimer's disease (AD), and whether positive aspects of caregiving mediated this relationship. We conducted a cross-sectional study of patients diagnosed with AD from 2 hospitals and 3 communities in Taiyuan, China, and their caregivers. Latent moderated structural equations and the bias-corrected percentile bootstrap method were used to estimate the parameters of moderating and mediating effects, respectively. Social support significantly moderated the effects of AD patient cognitive function (P mediated the association between patient depression and caregiver burden (P = 0.006), caregiver anxiety (P = 0.007), and caregiver depression (P = 0.034). The findings identify social support as a moderator and positive aspects of caregiving as a mediator of the relationship between patient-related factors and negative caregiver outcomes. The results suggest that health care providers must offer more effective social support for caregivers. In addition, prompt identification of patient and caregiver emotional states could help to improve quality of life. Copyright © 2018 John Wiley & Sons, Ltd.

  12. Conducting effective performance appraisals.

    Science.gov (United States)

    2001-01-01

    According to experts, performance appraisals rate just below firing someone as the least favorite thing managers do. Many factors contribute to this view--one is that current systems do a poor job of evaluating performance and in fact often impede both evaluation and performance. When used as part of an ongoing supportive process of goal setting and feedback, performance appraisals can enhance performance and morale. One alternative to traditional employee evaluation methods is full-circle or 360-degree feedback. Contained in this issue are practical suggestions for preparing employees for performance appraisals which, when followed daily, encourage employees to put their best feet forward as part of their regular routine. Also included is a template specific to assessing the performance of clinical laboratory technologists . Additionally, numerous resources are provided to help you refine appraisal systems to fit your needs. Full-circle feedback is proving to be a boon to managers. It relieves them from being the exclusive "heavies" in evaluating performance, integrates appraisal input from several sources, and incorporates increasing employee skills, competencies, and satisfaction, thus improving productivity of people and processes. And aren't integration and continuous improvement what the laboratory is all about?

  13. Carga del cuidado y calidad de vida en cuidadores familiares de personas con enfermedad respiratoria crónica / Burden load and quality of life in family caregivers of people with chronic respiratory disease

    Directory of Open Access Journals (Sweden)

    Edgar A. Pinzón

    2016-05-01

    Full Text Available Resumen Objetivo: establecer la relación entre la carga del cuidado y la calidad de vida en cuidadores familiares de personas con enfermedades respiratorias crónicas. Metodología: estudio de abordaje cuantitativo descriptivo, de correlación, y corte transversal. Participaron 55 cuidadores familiares que asisten a una institución de tercer nivel de atención en salud de la ciudad de Bucaramanga. Se utilizaron los instrumentos: encuesta de caracterización del cuidador familiar de persona con enfermedad crónica, calidad de vida versión familiar de persona con enfermedad crónica y Carga del cuidado de Zarit. El análisis se realizó mediante estadística descriptiva con medidas de tendencia central y de dispersión y la determinación del coeficiente de correlación de Spearman Resultados: los cuidadores familiares son en su mayoría mujeres, de estratos socioeconómicos bajos, ocupación hogar, una mediana de 18 horas día a la asistencia y cuidado; presentan una calidad de vida global percibida media. En cuanto a la carga del cuidado el 23,7% de los cuidadores presenta una sobrecarga severa, el 27,3% sobrecarga leve y el 49%, no presentan sobrecarga de acuerdo con la clasificación establecida por Zarit. El coeficiente de correlación de Spearman obtenido fue de -0,783 estadísticamente significativo (p=0,00 Conclusión: existe una correlación inversa entre la calidad de vida y la carga de cuidado de los cuidadores familiares de personas con enfermedad respiratoria crónica. / Abstract Objective: to establish the relationship between the care burden and quality of life of family caregivers of patients with chronic respiratory diseases. Methodology: a quantitative, descriptive, correlation, and cross sectional study performed with 55 family caregivers attending a tertiary health care institution in the city of Bucaramanga. The following instruments were used: characterization survey of the family caregivers of people with chronic

  14. Appraisal of Transport Projects

    DEFF Research Database (Denmark)

    Jensen, Anders Vestergaard

    and robustness measures have been elaborated, which examine the subjective part of the MCDA (in form of criteria weights) and its role in decision support making. For this purpose both deterministic and stochastic sensitivity analyses have been developed. In addition, the focus has been formulating a framework...... into account the interests and preferences of different stakeholders. These various interests and preferences have been revealed by the use of decision conferencing, which engage the stakeholders and provide a common platform for understanding the decision problem. Leading up to this framework, this thesis has......, as robustness of a recommended solution is major concern in the final steps of decision making. As mentioned, the appraisal of transport projects is a complex issues involving conflict of various interests and this calls for new approaches to the practice of appraisal. The presented appraisal framework...

  15. Pre-loss grief in family caregivers during end-of-life cancer care: a nationwide population-based cohort study

    DEFF Research Database (Denmark)

    Nielsen, Mette Kjærgaard; Neergaard, Mette Asbjørn; Jensen, Anders Bonde

    2017-01-01

    sammenhæng med høj belastning af omsorgen for den syge (”high caregiver burden”), symptomer på depression, lav forberedthed på det forestående dødsfald, lav grad af kommunikation i familien om sygdom og død samt mængden af prognostisk information (både ”for meget” og ”for lidt” information). Studiet bygger...

  16. Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap.

    Science.gov (United States)

    Holroyd-Leduc, Jayna M; McMillan, Jacqueline; Jette, Nathalie; Brémault-Phillips, Suzette C; Duggleby, Wendy; Hanson, Heather M; Parmar, Jasneet

    2017-03-01

    Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

  17. A comparative study to identify factors of caregiver burden between baby boomers and post baby boomers: a secondary analysis of a US online caregiver survey.

    Science.gov (United States)

    Kim, Heejung; Lee, Sangeun; Cheon, Jooyoung; Hong, Soyun; Chang, Mido

    2018-05-02

    Baby boomers' position in the caregiving context is shifting from caregiver to care recipient as the population ages. While the unique characteristics of baby boomer caregivers are well established in caregiving literature, there is limited information about the next caregiving group after the baby boomers. In this study, the sociodemographic and caregiving-related characteristics of the two generations are compared and specific factors contributing to caregiver burden between baby boomer and post baby boomer caregivers are identified. This cross-sectional and correlational study used secondary analysis of data from the National Alliance for Caregiving and the American Association of Retired Persons. A structured online survey was conducted in 2014 with randomly selected samples (n = 1069) in the United States focusing on sociodemographics, caregiving-related characteristics, and burden of care. Descriptive statistics, multivariate linear regression analyses, and Steiger's Z-test were used to identify group differences in multivariate factors related to caregiver burden in two generational groups. Baby boomers and post baby boomers experienced caregiver burden to a similar degree. Caregiving-related factors are more likely to increase burden of care than sociodemographics in both groups. Caregiving without choice and spending longer hours on caregiving tasks were common factors that increased the burden in both generational groups (all p values baby boomer caregivers reported additional challenges, such as unemployment during caregiving, the dual responsibility of both adult and child care, and a family relationship with the care recipient. Due to the aging population of baby boomers, post baby boomers encounter different challenges related to caregiving burden, which is often considered an additional workload in their life course. Current policy and program tailored to baby boomers should be re-designed to meet the different needs of emerging caregivers

  18. Caregivers as the fulcrum of care for mentally ill in the community: The urban rural divide among caregivers and care giving facilities

    Directory of Open Access Journals (Sweden)

    R C Jiloha

    2016-01-01

    Full Text Available Illness trends, health beliefs, healthcare pathways, level of awareness, access to health care resources, level of social support, perceived stigma, burden, coping strategies, care giving appraisal, and cultural acceptance of modes of treatment are different in urban and rural settings along with different caregivers profile. This review will highlight these differences in light of their overall characteristics, and health seeking behavior. This further calls for empowering caregivers, understanding and exploring new dimensions of caregiving, and implementing holistic intervention for patients as well as caregiver′s well-being.

  19. Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study.

    Science.gov (United States)

    Henriksson, Anette; Årestedt, Kristofer

    2013-07-01

    Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. This was a correlational study using a cross-sectional design. The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

  20. Perceptions of family caregivers of cancer patients about the challenges of caregiving: a qualitative study.

    Science.gov (United States)

    Nemati, Shahnaz; Rassouli, Maryam; Ilkhani, Mahnaz; Baghestani, Ahmad Reza

    2018-03-01

    The experience of caring for a family member with cancer is associated with several care-related problems and challenges for the caregiver. The comprehensive and in-depth understanding of the trials and tribulations of caregiving can be a step towards resolving the problems faced by family caregivers of these patients. The present study aimed to explore challenges faced by Iranian family caregivers of cancer patients. The present qualitative study was conducted through in-depth semi-structured interviews held with 21 family caregivers of cancer patients selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analysed through conventional content analysis. The codes extracted from interviews produced four main themes, including 'confusion', 'uncertainty', 'disintegration' and 'setback', which collectively caused suffering for family caregivers. Care provided in an atmosphere of suffering and discontent diminishes caregiver's quality of life and quality of patient care. Health planners should therefore consider the challenges and sufferings faced by family caregivers and should seek to obviate them through appropriate plans. © 2017 Nordic College of Caring Science.

  1. PA12 Is digital storytelling ka pai for new zealand māori? using digital storytelling as a method to explore whānau end of life caregiving experiences: a pilot study.

    Science.gov (United States)

    Williams, Lisa; Moeke-Maxwell, Tess; Kothari, Shuchi; Pearson, Sarina; Gott, Merryn; Black, Stella; Frey, Rosemary; Wharemate, Rawiri; Hansen, Whio

    2015-04-01

    Māori regard stories as a preferred method for imparting knowledge through waiata (song), moteatea (poetry), kauwhau (moralistic tale), pakiwaitara (story) and purakau (myths). Storytelling is also an expression of tinorangatiratanga (self-determination); Māori have the right to manage their knowledge, which includes embodiment in forms transcending typical western formulations. Digital storytelling is a process by which 'ordinary people' create short autobiographical videos. It has found application in numerous disciplines including public health and has been used to articulatethe experiences of those often excluded from knowledge production. To explore the use of digital storytelling as a research method for learning about whānau (family) experiences providing end of life care for kaumātua (older people). Eight Māori and their nominated co-creators attended a three-day digital story telling workshop led by co-researchers Shuchi Kothari and Sarina Pearson. They were guided in the creation of first-person digital stories about caring for kaumātua. The videos were shared at a group screening, and participants completed questionnaires about the workshop and their videos. A Kaupapa Māori narrative analysis was applied to their stories to gain new perspectives on Māori end of life caregiving practices. (Kaupapa Maori research privileges Maori worldviews and indigenous knowledge systems.) Digital storytelling is an appropriate method as Māori is an oral/aural society. It allows Māori to share their stories with others, thus promoting community support at the end of life, befitting a public health approach. Digital storytelling can be a useful method for Māori to express their experiences providing end of life caregiving. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  2. Moderating role of positive aspects of caregiving in the relationship between depression in persons with Alzheimer's disease and caregiver burden.

    Science.gov (United States)

    Xue, Haihong; Zhai, Junwei; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei

    2018-03-01

    Improving caregivers' positive perception of their role may be important in reducing their subjective burden when caring for Alzheimer's disease (AD) patients with depression. The purpose of present study was to explore the moderating role of the positive aspects of caregiving (PAC) on the subjective burden on family caregivers when managing depressive behaviors. We conducted a cross-sectional study including 200 pairs of patients with mild AD and their caregivers from three communities and two hospitals in Taiyuan, China in October 2014. The latent variable interaction model based on a two stage least squares (2SLS) regression was fitted. A significant moderating effect of the PAC was found on the relationship between depression in patients with AD and the caregiver burden they cause. Caregivers dealing with patients with low levels of depression but with high levels of the PAC had significantly lower levels of caregiver burden compared to those caregivers with the low levels of PAC. Continuously detecting the patient's mental state combined with caregivers having an optimistic attitude towards life may improve the quality of life for both patients and caregivers. Copyright © 2018 Elsevier B.V. All rights reserved.

  3. Exploring oral literacy in communication with hospice caregivers.

    Science.gov (United States)

    Wittenberg-Lyles, Elaine; Goldsmith, Joy; Oliver, Debra Parker; Demiris, George; Kruse, Robin L; Van Stee, Stephanie

    2013-11-01

    Low oral literacy has been identified as a barrier to pain management for informal caregivers who receive verbal instructions on pain medication and pain protocols. To examine recorded communication between hospice staff and informal caregivers and explore caregiver experiences. Using transcripts of interactions (n = 47), oral literacy features were analyzed by examining the generalized language complexity using the Flesch-Kincaid grading scale and the dialogue interactivity defined by talking turns and interaction time. Means for longitudinal follow-up measures on caregiver anxiety, quality of life, perception of pain management, knowledge and comfort providing pain medication, and satisfaction were examined to explore their relationship to oral literacy. Communication between team members and caregivers averaged a fourth-grade level on the Flesch-Kincaid scale, indicating that communication was easy to understand. Reading ease was associated (r = 0.67, P < 0.05) with caregiver understanding of and comfort with pain management. Perceived barriers to caregiver pain management were lower when sessions had increased use of passive sentences (r = 0.61, P < 0.01), suggesting that passive voice was not an accurate indicator of language complexity. Caregiver understanding and comfort with administering pain medications (r = -0.82, P < 0.01) and caregiver quality of life (r = -0.49, P < 0.05) were negatively correlated with dialogue pace. As the grade level of talk with caregivers and hospice teams increased, associated caregiver anxiety increased. Caregivers with higher anxiety also experienced greater difficulty in understanding pain medication and its management. Specific adjustments that hospice teams can make to improve caregiver experiences are identified. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  4. Reducing the psychosocial impact of aphasia on mood and quality of life in people with aphasia and the impact of caregiving in family members through the Aphasia Action Success Knowledge (Aphasia ASK) program: study protocol for a randomized controlled trial.

    Science.gov (United States)

    Worrall, Linda; Ryan, Brooke; Hudson, Kyla; Kneebone, Ian; Simmons-Mackie, Nina; Khan, Asaduzzaman; Hoffmann, Tammy; Power, Emma; Togher, Leanne; Rose, Miranda

    2016-03-22

    People with aphasia and their family members are at high risk of experiencing post stroke depression. The impact of early interventions on mood and quality of life for people with aphasia is unknown. This study will determine whether an early intervention for both the person with aphasia after stroke and their family members leads to better mood and quality of life outcomes for people with aphasia, and less caregiver burden and better mental health for their family members. This is a multicenter, cluster-randomized controlled trial. Clusters, which are represented by Health Service Districts, will be randomized to the experimental intervention (Aphasia Action Success Knowledge Program) or an attention control (Secondary Stroke Prevention Information Program). People with aphasia and their family members will be blinded to the study design and treatment allocation (that is, will not know there are two arms to the study). Both arms of the study will receive usual care in addition to either the experimental or the attention control intervention. A total of 344 people with aphasia and their family members will be recruited. Considering a cluster size of 20, the required sample size can be achieved from 18 clusters. However, 20 clusters will be recruited to account for the potential of cluster attrition during the study. Primary outcome measures will be mood and quality of life of people with aphasia at 12 months post stroke. Secondary measures will be family member outcomes assessing the impact of caregiving and mental health, and self-reported stroke risk-related behaviors of people with aphasia. This is the first known program tailored for people with aphasia and their family members that aims to prevent depression in people with aphasia by providing intervention early after the stroke. This trial is registered in the Australian New Zealand Clinical Trials Registry (ANZCTR) as ACTRN12614000979651 . Date registered: 11 September 2014.

  5. The importance of family caregiving to achieving palliative care at home: a case report of end-of-life breast cancer in an area struck by the 2011 Fukushima nuclear crisis: A case report.

    Science.gov (United States)

    Ozaki, Akihiko; Tsubokura, Masaharu; Leppold, Claire; Sawano, Toyoaki; Tsukada, Manabu; Nemoto, Tsuyoshi; Kosugi, Kazuhiro; Nishikawa, Yoshitaka; Kato, Shigeaki; Ohira, Hiromichi

    2017-11-01

    The primary setting of palliative care has shifted from inpatient care to patients' residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters. In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster. In August 2015, a 59-year-old Japanese female presented to our hospital, located 23 km north of Fukushima Daiichi Nuclear Power Plant, with a right breast ulcer. The patient was diagnosed with stage IV breast cancer. The patient's general condition gradually worsened despite a one-year course of chemotherapy, and she became bedridden after a fall in October 2016. Although the patient wished to receive palliative homecare, this appeared challenging to achieve because she resided alone in a temporary housing shelter. Although she originally lived with her family in Odaka District, Fukushima, she relocated outside of the city following evacuation orders after the disaster. The evacuation orders for Odaka District were still in effect when she returned to the city alone in 2014. We contacted her sister who moved apart from her during the evacuation, and explained the necessity of family caregiving to enable her palliative homecare. The sister decided to move back to their original residence in Odaka District and live with the patient again. The patient successfully spent her end-of-life period and died at home. Health care providers and community health workers may need to take a pro-active approach to communicating with family members to draw informal support to enable patients' end-of-life management according to their values and preferences. This is a lesson which may be applicable to broader healthcare settings beyond cancer, or disaster contexts, considering that population

  6. Work-Related Goal Appraisals and Stress during the Transition from Education to Work

    Science.gov (United States)

    Dietrich, Julia; Jokisaari, Markku; Nurmi, Jari-Erik

    2012-01-01

    People's personal goals interact with their life situations in many ways. This study examined the appraisals of personal goals during a transition from education to work and their interplay with stress in different domains of life. Finnish young adults (N = 265, 60% female) reported on their goals in the work domain, and related appraisals of…

  7. 75 FR 67903 - National Family Caregivers Month, 2010

    Science.gov (United States)

    2010-11-04

    ... can enable workers with caregiver responsibilities to balance work and family obligations more easily... generations of family members. Their efforts are vital to the quality of life of countless American seniors... independent living, as well as compensate family caregivers for their devoted work. Our businesses and...

  8. Types of Family Caregiving and Daily Experiences in Midlife and Late Adulthood: The Moderating Influences of Marital Status and Age.

    Science.gov (United States)

    Wong, Jen D; Shobo, Yetunde

    2017-07-01

    Guided by the life-course perspective, this study contributes to the family caregiving, aging, and disability literature by examining the daily experiences of three types of family caregivers in midlife and late adulthood. A sample of 162 caregivers from the National Survey of Midlife in the United States study completed interviews, questionnaires, and a Daily Diary Study. Multilevel models showed the patterns of daily time use did not differ by caregiver types. Caregivers of sons/daughters with developmental disabilities (DD) experienced more daily stressors than caregivers of parents with health conditions (HC) and caregivers of spouses with HC. Unmarried caregivers of sons/daughters with DD reported spending more time on daily leisure activities and exhibited greater daily stressor exposure than other family caregivers. Age did not moderate the associations between caregiver types and daily experiences. Findings highlight the important consideration of the caregivers' characteristics to better determine the quality of their daily experiences in midlife and late adulthood.

  9. Psychosocial impact of early onset dementia among caregivers

    Directory of Open Access Journals (Sweden)

    Nathália R. S. Kimura

    2015-12-01

    Full Text Available Introduction: There is growing recognition of early onset dementia (EOD as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD and their caregivers. Objective: To analyze the psychosocial impact of EOD in family caregivers. Methods: The study design was qualitative. Nine EOD caregivers (7 women were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Results: Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. Conclusion: The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

  10. Psychosocial impact of early onset dementia among caregivers.

    Science.gov (United States)

    Kimura, Nathália R S; Maffioletti, Virgínia L R; Santos, Raquel L; Baptista, Maria Alice Tourinho; Dourado, Marcia C N

    2015-01-01

    There is growing recognition of early onset dementia (EOD) as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD) and their caregivers. To analyze the psychosocial impact of EOD in family caregivers. The study design was qualitative. Nine EOD caregivers (7 women) were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

  11. A Problem Solving Intervention for hospice caregivers: a pilot study.

    Science.gov (United States)

    Demiris, George; Oliver, Debra Parker; Washington, Karla; Fruehling, Lynne Thomas; Haggarty-Robbins, Donna; Doorenbos, Ardith; Wechkin, Hope; Berry, Donna

    2010-08-01

    The Problem Solving Intervention (PSI) is a structured, cognitive-behavioral intervention that provides people with problem-solving coping skills to help them face major negative life events and daily challenges. PSI has been applied to numerous settings but remains largely unexplored in the hospice setting. The aim of this pilot study was to demonstrate the feasibility of PSI targeting informal caregivers of hospice patients. We enrolled hospice caregivers who were receiving outpatient services from two hospice agencies. The intervention included three visits by a research team member. The agenda for each visit was informed by the problem-solving theoretical framework and was customized based on the most pressing problems identified by the caregivers. We enrolled 29 caregivers. Patient's pain was the most frequently identified problem. On average, caregivers reported a higher quality of life and lower level of anxiety postintervention than at baseline. An examination of the caregiver reaction assessment showed an increase of positive esteem average and a decrease of the average value of lack of family support, impact on finances, impact on schedules, and on health. After completing the intervention, caregivers reported lower levels of anxiety, improved problem solving skills, and a reduced negative impact of caregiving. Furthermore, caregivers reported high levels of satisfaction with the intervention, perceiving it as a platform to articulate their challenges and develop a plan to address them. Findings demonstrate the value of problem solving as a psycho-educational intervention in the hospice setting and call for further research in this area.

  12. The burden on informal caregivers of people with bipolar disorder.

    Science.gov (United States)

    Ogilvie, Alan D; Morant, Nicola; Goodwin, Guy M

    2005-01-01

    Caregivers of people with bipolar disorder may experience a different quality of burden than is seen with other illnesses. A better understanding of their concerns is necessary to improve the training of professionals working with this population. Conceptualizing caregiver burden in a conventional medical framework may not focus enough on issues important to caregivers, or on cultural and social issues. Perceptions of caregivers about bipolar disorder have important effects on levels of burden experienced. It is important to distinguish between caregivers' experience of this subjective burden and objective burden as externally appraised. Caregivers' previous experiences of health services may influence their beliefs about the illness. Caregiver burden is associated with depression, which affects patient recovery by adding stress to the living environment. The objective burden on caregivers of patients with bipolar disorder is significantly higher than for those with unipolar depression. Caregivers of bipolar patients have high levels of expressed emotion, including critical, hostile, or over-involved attitudes. Several measures have been developed to assess the care burden of patients with depressive disorders, but may be inappropriate for patients with bipolar disorder because of its cyclical nature and the stresses arising from manic and hypomanic episodes. Inter-episode symptoms pose another potential of burden in patients with bipolar disorder. Subsyndromal depressive symptoms are common in this phase of the illness, resulting in severe and widespread impairment of function. Despite the importance of assessing caregiver burden in bipolar disorder, relevant literature is scarce. The specific effects of mania and inter-episode symptoms have not been adequately addressed, and there is a lack of existing measures to assess burden adequately, causing uncertainty regarding how best to structure family interventions to optimally alleviate burden. The relatively few

  13. Psychometric evaluation of the shortened resilience scale among Alzheimer's caregivers.

    Science.gov (United States)

    Wilks, Scott E

    2008-01-01

    The purpose of this study was to evaluate psychometric properties of the shortened Resilience Scale (15-item version RS15) among a sample of Alzheimer's caregivers. Self-reported data were collected from 229 participants at 2 Alzheimer's caregiver conferences. RS15 principal axis factoring indicated a single-dimensional solution with all items loaded. Reliability was strong. Convergent validity for the RS15 was suggested through its correlations with stress, family support, and friend support. Odds ratios showed significant likelihoods of high resilience given low stress and high social support. The results confirmed the RS15 to be a psychometrically sound measure that can be used to appraise the efficacy of adaptability among Alzheimer's caregivers.

  14. When LVAD Patients Die: The Caregiver's Mourning.

    Science.gov (United States)

    Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo

    2016-05-01

    Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning. Copyright © 2015 International Center for Artificial Organs and Transplantation and Wiley Periodicals, Inc.

  15. Effects of the situational context and interactional process on the quality of family caregiving.

    Science.gov (United States)

    Phillips, L R; Morrison, E; Steffl, B; Chae, Y M; Cromwell, S L; Russell, C K

    1995-06-01

    A staged theoretical model designed to explain the quality of elder caring by family members was tested. The model posits how the situational context, interactional process, and caregiving burden perceived by the caregiver affect the quality of elder caring. The purpose was to determine the amount of variance explained by the interactional process beyond that explained by the situational context and caregiving burden. Data were collected from 209 elder-caregiver dyads using interviews, observations, and caregiver self-reports. The strongest predictors of caregiving burden were the caregiver's stressful negative life events (situational context) and discrepancy between past and present image of elder (interactional process). The strongest predictors of quality of elder caring were the caregiver's perception of subjective burden and a monitoring role definition on the part of the caregiver (interactional process).

  16. The Burden Endured by Caregivers of Patients With Morquio A Syndrome

    Directory of Open Access Journals (Sweden)

    Christian J. Hendriksz MD

    2014-07-01

    Full Text Available This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with family and friends, physical and mental health, and employment status and income was evaluated. Caregiver burden increased with disease progression. Adult patients always using a wheelchair required substantially more caregiving time and complete assistance with a larger proportion of daily activities than more mobile patients. In children, this was less apparent. Caregivers suffered physically and emotionally and their family and social life and financial situation were considerably impacted. Improvements in patient mobility may substantially reduce the level of caregiver support and the burden of caregiving.

  17. Tacit definitions of informal caregiving.

    Science.gov (United States)

    Wrubel, J; Richards, T A; Folkman, S; Acree, M C

    2001-01-01

    This study describes three tacit definitions of informal caregiving and explores the extent to which differences in these tacit definitions explain variation in caregivers' negative mood over time. There is a growing need to understand the sources of stress and gratification for informal caregivers. Tacit definitions of informal caregiving refer to caregivers' understanding of what caregiving entails. These definitions are tacit because they arise from caregivers' taken-for-granted understanding rather than formally articulated positions concerning caregiving. A random sample of 60 men, all of whom were caregiving partners of men with acquired immunodeficiency syndrome (AIDS), was drawn from a larger cohort of 253 participants in the University of California San Francisco (UCSF) Coping Project (1990-1997). The caregivers were assessed bimonthly for 2 years with procedures that included a semi-structured interview focusing on a recent stressful event involving caregiving, and quantitative measures of well-being. Interpretive phenomenological case studies of the narrative accounts of the 60 caregivers produced three tacit definitions of caregiving - engagement, conflict and distance. These three tacit definitions were distinguished by differences in learning about caregiving, involvement in health care decisions, caregiving activities and reported sources of stress. The three groups differed on measures of dyadic adjustment, depression, anger and anxiety. Better understanding of caregivers' tacit definitions can facilitate and enhance effective support and interventions for caregivers.

  18. Elder care and the impact of caregiver strain on the health of employed caregivers.

    Science.gov (United States)

    Duxbury, Linda; Higgins, Christopher; Smart, Rob

    2011-01-01

    As the baby-boom generation moves towards middle age, and their parents toward old age, the number of employees who combine care for an elderly dependant and work will increase in number. These employees are "at risk" of experiencing caregiver strain. This paper advances our understanding of these trends by examining the relationship between caregiver strain and the health of employed caregivers. Our study involved the analysis of data from the 2001 Canadian National Work, Family and Lifestyle Study (N= 31,517). MANOVA was used to determine the relationship between caregiver strain and three situational factors: (1) gender; (2) where the care recipient lives compared to the caregiver; and, (3) family type. Regression was used to determine the relationship between caregiver strain and mental health. We found that caregiver strain depends on gender, family type and location of care. Emotional strain was a significant predictor of mental health. These findings support the need for organizations to expand their thinking around work-life balance to include employees who have eldercare responsibilities.

  19. Quality of Caregiving is Positively Associated With Neurodevelopment During the First Year of Life Among HIV-Exposed Uninfected Children in Uganda.

    Science.gov (United States)

    Familiar, Itziar; Collins, Shalean M; Sikorskii, Alla; Ruisenor-Escudero, Horacio; Natamba, Barnabas; Bangirana, Paul; Widen, Elizabeth M; Achidri, Daniel; Achola, Harriet; Onen, Daniel; Boivin, Michael; Young, Sera L

    2018-03-01

    We sought to evaluate whether maternal characteristics and infant developmental milieu were predictive of early cognitive development in HIV-exposed uninfected (HEU) and HIV-unexposed uninfected (HU) infants in Uganda. Longitudinal pregnancy study. Ugandan women (n = 228) were enrolled into the Postnatal Nutrition and Psychosocial Health Outcomes study with a 2:1 HIV-uninfected: infected ratio. Maternal sociodemographic, perceived social support, and depressive symptomatology were assessed. Infant growth and neurocognitive development were assessed at 6 and 12 months of age using Mullen Scales of Early Learning (MSEL). Caldwell Home Observation for Home Environment was used to gauge caregiving quality. Linear mixed-effects models were built to examine the relationships between maternal and infant characteristics with infant MSEL scores by HIV exposure. Two MSEL measures were available for 215 mother-child dyads: 140 infants (65%) were HIV-uninfected (HU), 57 (27%) were HIV-exposed uninfected (HEU) with mothers reporting antiretroviral therapy, and 18 (8%) were HEU with mothers not reporting antiretroviral therapy. HEU had lower MSEL Composite (β = -3.94, P = 0.03) and Gross Motor scores (β = -3.41, P = 0.01) than HU. Home Observation for Home Environment total score was positively associated with MSEL Composite (β = 0.81, P = 0.01), Receptive Language (β = 0.59, P = 0.001), and Expressive Language (β = 0.64, P = 0.01) scores. HIV exposure is associated with lower infant cognitive development scores. Increasing maternal quality of caregiving may improve early cognitive development.

  20. Do informal caregivers in mental illness feel more burdened? A comparative study of mental versus somatic illnesses.

    Science.gov (United States)

    Hastrup, Lene H; Van Den Berg, Bernard; Gyrd-Hansen, Dorte

    2011-08-01

    This study investigates a possible added subjective burden among informal caregivers to care recipients with a mental illness or a combination of mental and somatic illnesses compared with caregivers to care recipients with a somatic illness. The study also investigates the subjective caregiver burden by caregivers' characteristics and objective burden. The association between subjective caregiver burden and socio-demographic factors, objective burden, and health-related quality of life was analyzed in a population of 865 Dutch informal caregivers, using multiple linear regression analysis. Controlling for other factors in the analysis, we found that caring for a recipient with mental illness or a combination of mental and somatic illness was associated with an extra subjective caregiver burden (measured by Caregiver Strain Index). Objective burden, in terms of more than 50 hours of care provision per week, less than three years of caregiving, or living together with the care recipients was associated with higher subjective caregiver burden. Other factors associated with higher subjective caregiver burden were being partners or a child of care recipient, having a paid job, a low health-related quality of life (EQ-5D), or having an illness. This study suggests that caregivers to care recipients with a mental and especially a combination of mental and somatic illnesses have a higher subjective caregiver burden compared with caregivers to care recipients with a somatic illness. Because the study is not representative of all caregivers, more research focusing on identifying and contacting informal caregivers is needed to confirm the result.

  1. More caregiving, less working: caregiving roles and gender difference.

    Science.gov (United States)

    Lee, Yeonjung; Tang, Fengyan

    2015-06-01

    This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments. © The Author(s) 2013.

  2. Caregiver burden of Mexican dementia patients: the role of dysexecutive syndrome, sleep disorders, schooling and caregiver depression.

    Science.gov (United States)

    Rosas-Carrasco, Óscar; Guerra-Silla, María de Guadalupe; Torres-Arreola, Laura Del Pilar; García-Peña, Carmen; Escamilla-Jiménez, Cristopher Isaac; González-González, César

    2014-01-01

    As a result of the accelerated growth of the elderly population, reconfiguration of families and member roles, and the increase of mental disorders, it is necessary to investigate the effects of this set of factors on the caregivers of patients with dementia in Mexico. Mental disorders of individuals have a negative impact on their physical and emotional quality of life, leading to greater dependence and making the caring experience a heavy burden. Several studies (none in Mexico) have used either the characteristics of the patient or caregiver to determine the burden, but few studies have included both profiles within a single study. The objective of the present study was to analyze the characteristics of the patients and caregivers associated with caregiver burden. A multicenter study was carried out in six health institutions located in Mexico City, including 175 patients (and their caregivers) diagnosed with different types of dementia. We used the Spanish Caregiver Burden Screen. Descriptive analysis and logistic regressions were used to estimate the effect of the covariates on the caregiver burden. The results showed that patient variables have a greater impact on caregiver burden than caregiver-associated variables. Dysexecutive syndrome, sleep disorders, schooling and caregiver depression are associated with a higher level of caregiver burden. Caregiver burden is a complex phenomenon. The results of the present study showed the need to implement multifactorial interventions targeting the caregiver to reduce the burden, strengthen the skills for patient management to avoid depression, improve patient health, and diminish functional dependence and future hospitalization. © 2013 Japan Geriatrics Society.

  3. Caregiver psychoeducation for schizophrenia: is gender important?

    LENUS (Irish Health Repository)

    McWilliams, Stephen

    2007-07-01

    Females care for individuals with chronic illness more commonly than males and have different attitudes to illness. Additionally, they experience greater burden and reduced quality of life, when compared to their male counterparts. Since knowledge has been shown to be related to burden, we sought to determine whether there were gender differences in knowledge acquisition during a six-week caregiver psychoeducation programme (CPP).

  4. Effects of appraisal training on responses to a distressing autobiographical event.

    Science.gov (United States)

    Woud, Marcella L; Zlomuzica, Armin; Cwik, Jan C; Margraf, Jürgen; Shkreli, Lorika; Blackwell, Simon E; Gladwin, Thomas E; Ehring, Thomas

    2018-04-14

    Dysfunctional appraisals are a key factor suggested to be involved in the development and maintenance of PTSD. Research has shown that experimental induction of a positive or negative appraisal style following a laboratory stressor affects analogue posttraumatic stress symptoms. This supports a causal role of appraisal in the development of traumatic stress symptoms and the therapeutic promise of modifying appraisals to reduce PTSD symptoms. The present study aimed to extend previous findings by investigating the effects of experimentally induced appraisals on reactions to a naturally occurring analogue trauma and by examining effects on both explicit and implicit appraisals. Participants who had experienced a distressing life event were asked to imagine themselves in the most distressing moment of that event and then received either a positive or negative Cognitive Bias Modification training targeting appraisals (CBM-App). The CBM-App training induced training-congruent appraisals, but group differences in changes in appraisal over training were only seen for explicit and not implicit appraisals. However, participants trained positively reported less intrusion distress over the subsequent week than those trained negatively, and lower levels of overall posttraumatic stress symptoms. These data support the causal relationship between appraisals and trauma distress, and further illuminate the mechanisms linking the two. Copyright © 2018 Elsevier Ltd. All rights reserved.

  5. Emotional and social perception of main caregiver in a rural health district

    OpenAIRE

    Fabiola Yonte Huete; María Belén Yonte Huete; Mª Teresa Meneses Jiménez

    2012-01-01

    Cross-sectional observational study of 50 caregivers of dependent patient immobilized. We analyzed the sociodemographic characteristics, type and characteristics of care, social, emotional and quality of life of main caregivers. Sociodemographic and care characteristics related to dependent patient immobilized was also studied. Objective: Describing the profile of dependent patient immobilized and their caregiver, and the emotional and social characteristics perceived by the main caregiver. R...

  6. The Mediating Role of Sleep Quality on Well-Being Among Japanese Working Family Caregivers

    OpenAIRE

    Honda, Ayumi; Iwasaki, Yoshie; Honda, Sumihisa

    2017-01-01

    The purpose of this study was to investigate whether the well-being of caregivers is mediated by the association between behavioral and psychological symptoms in elderly relatives and the quality of sleep experienced by caregivers using a mediational model. The participants were 105 working family caregivers in Japan. We assessed well-being based on the Kessler Scale 10, self-rated health, and satisfaction in daily life. Our results showed that the well-being in working family caregivers was ...

  7. Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study.

    Science.gov (United States)

    Mroz, Emily L; Poulin, Michael J; Grant, Pei C; Depner, Rachel M; Breier, Jennifer; Byrwa, David J; Wright, Scott T

    2018-03-01

    Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life. Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction. A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period. An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health. High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.

  8. Patterns of change and stability in caregiver burden and life satisfaction from 1 to 2 years after severe traumatic brain injury: A Norwegian longitudinal study.

    Science.gov (United States)

    Manskow, Unn Sollid; Friborg, Oddgeir; Røe, Cecilie; Braine, Mary; Damsgard, Elin; Anke, Audny

    2017-01-01

    To assess burden and life satisfaction in family members of patients with severe traumatic brain injury (sTBI) at 1 and 2 years post-injury, examine if change in burden can be predicted by family member and patient demographics, patient's functional status, family members social network or level of burden at 1 year. Prospective national multicenter study. Self-report from family members, patient data collected from a national cohort study on patients with sTBI. 80 family members participated. The Caregiver Burden Scale (CBS), life satisfaction. Total burden increased between years 1 and 2 post-injury (P = 0.04). Thirty percent of the family members reported an increased burden, 55% were stable, and 15% had a decrease in burden between the two follow-up times. Logistic regression analyses revealed that experiencing loneliness was an independent predictor of increased burden from 1 to 2 years post-injury (OR = 4.35, P Life Satisfaction was lower at the 2 year follow-up than at 1 year (p = 0.03). The results demonstrate a need for long-term follow-up of patients and family members that focuses on professional support to relieve burden and risk of loneliness or social isolation. This group may benefit from additional follow-up interventions tailored to their needs.

  9. Positive effects of a cognitive-behavioral intervention program for family caregivers of demented elderly

    Directory of Open Access Journals (Sweden)

    Patrícia Paes Araujo Fialho

    2012-10-01

    Full Text Available OBJECTIVE: It was to examine the effects of a Cognitive-Behavioral Therapy (CBT program administered to family caregivers of dementia patients. METHODS: Forty family caregivers were enrolled in a CBT intervention across eight weekly sessions. Cognitive, functional and behavioral status of patients were evaluated, as well as their own and their family caregivers' perceptions of quality of life. Specific instruments were also applied to evaluate caregiver stress level, coping, anxiety and depression. RESULTS: At the end of the program, family caregivers reported fewer neuropsychiatric symptoms among patients and an improvement in patients' quality of life. In addition, caregivers changed their coping strategies, whereas a significant decrease was observed in their anxiety levels. CONCLUSION: The CBT program employed appears to be a promising and useful tool for clinical practice, displaying positive effects on quality of life and neuropsychiatric symptoms of dementia, as well as proving beneficial for alleviating anxiety and stress in family caregivers.

  10. 32 CFR 644.44 - Fee appraisals.

    Science.gov (United States)

    2010-07-01

    ... HANDBOOK Appraisal § 644.44 Fee appraisals. (a) Definitions and procedures. (1) The complete and.... The keynote of this approach lies in the sound development of a proper rate. The appraiser must have a...

  11. Repetitive Questioning Exasperates Caregivers

    Directory of Open Access Journals (Sweden)

    R. C. Hamdy MD

    2018-01-01

    Full Text Available Repetitive questioning is due to an impaired episodic memory and is a frequent, often presenting, problem in patients with Alzheimer’s disease (amnestic type. It is due to the patients’ difficulties learning new information, retaining it, and recalling it, and is often aggravated by a poor attention span and easy distractibility. A number of factors may trigger and maintain repetitive questioning. Caregivers should try to identify and address these triggers. In the case discussion presented, it is due to the patient’s concerns about her and her family’s safety triggered by watching a particularly violent movie aired on TV. What went wrong in the patient/caregiver interaction and how it could have been avoided or averted are explored. Also reviewed are the impact of repetitive questioning, the challenges it raises for caregivers, and some effective intervention strategies that may be useful to diffuse the angst that caregivers experience with repetitive questioning.

  12. Depression and Caregiving

    Science.gov (United States)

    ... FCA - A A + A You are here Home Depression and Caregiving Order this publication Printer-friendly version ... a more serious depression over time. Symptoms of Depression People experience depression in different ways. Some may ...

  13. A Resilience Training Module for Caregivers of Dementia Patients

    OpenAIRE

    Huey Wah Tze; Hashim Shahabuddin

    2015-01-01

    As life span increases, society is facing an aging population and one of the major aging problems is dementia. Caregivers of dementia patients are usually family members who juggle work, family commitments and caring for the patients. The caregivers are at risk of depression, suicide and abusing their patients. As resilience has a positive relationship with surviving life crises, enhancing resilience will provide them with skills to cope and decrease depression. The purpose of this article is...

  14. Leisure Time Activities and Mental Health in Informal Dementia Caregivers.

    Science.gov (United States)

    Schüz, Benjamin; Czerniawski, Alana; Davie, Nicola; Miller, Lisa; Quinn, Michael G; King, Carolyn; Carr, Andrea; Elliott, Kate-Ellen J; Robinson, Andrew; Scott, Jenn L

    2015-07-01

    Dementia prevalence and the demand for dementia care are increasing. Informal caregiving accounts for a large proportion of dementia care, but can come at high cost for caregivers. Informal dementia caregivers are at higher risk for mental health problems than the general population. This study examines whether perceived change in leisure activities is one working mechanism linking stress and burden experience in dementia caregiving to lower mental health (depressive symptoms, anxiety symptoms, and reduced satisfaction with life), and whether there are group-based leisure activities that can buffer this detrimental effect. A total of 346 informal Australian dementia caregivers (88.15% female, age 18-82 years) participated in an online study. Mediation and moderation analyses using multiple regression demonstrated that perceived changes in leisure activities linked caregiving stress and burden to lower mental health, and that membership in groups engaging in affiliation or social activities attenuates negative effects of caregiving. Informal dementia caregivers benefit from satisfying leisure activities. In particular, engaging in social activities and self-help groups buffered the negative impact of caregiving. © 2015 The International Association of Applied Psychology.

  15. Ethics of End of Life Decisions in Pediatrics: A Narrative Review of the Roles of Caregivers, Shared Decision-Making, and Patient Centered Values

    Directory of Open Access Journals (Sweden)

    Jonathan D. Santoro

    2018-04-01

    Full Text Available Background: This manuscript reviews unique aspects of end of life decision-making in pediatrics. Methods: A narrative literature review of pediatric end of life issues was performed in the English language. Results: While a paternalistic approach is typically applied to children with life-limiting medical prognoses, the cognitive, language, and physical variability in this patient population is wide and worthy of review. In end of life discussions in pediatrics, the consideration of a child’s input is often not reviewed in depth, although a shared decision-making model is ideal for use, even for children with presumed limitations due to age. This narrative review of end of life decision-making in pediatric care explores nomenclature, the introduction of the concept of death, relevant historical studies, limitations to the shared decision-making model, the current state of end of life autonomy in pediatrics, and future directions and needs. Although progress is being made toward a more uniform and standardized approach to care, few non-institutional protocols exist. Complicating factors in the lack of guidelines include the unique facets of pediatric end of life care, including physical age, paternalism, the cognitive and language capacity of patients, subconscious influencers of parents, and normative values of death in pediatrics. Conclusions: Although there have been strides in end of life decision-making in pediatrics, further investigation and research is needed in this field.

  16. Ethics of End of Life Decisions in Pediatrics: A Narrative Review of the Roles of Caregivers, Shared Decision-Making, and Patient Centered Values.

    Science.gov (United States)

    Santoro, Jonathan D; Bennett, Mariko

    2018-04-26

    Background: This manuscript reviews unique aspects of end of life decision-making in pediatrics. Methods: A narrative literature review of pediatric end of life issues was performed in the English language. Results: While a paternalistic approach is typically applied to children with life-limiting medical prognoses, the cognitive, language, and physical variability in this patient population is wide and worthy of review. In end of life discussions in pediatrics, the consideration of a child’s input is often not reviewed in depth, although a shared decision-making model is ideal for use, even for children with presumed limitations due to age. This narrative review of end of life decision-making in pediatric care explores nomenclature, the introduction of the concept of death, relevant historical studies, limitations to the shared decision-making model, the current state of end of life autonomy in pediatrics, and future directions and needs. Although progress is being made toward a more uniform and standardized approach to care, few non-institutional protocols exist. Complicating factors in the lack of guidelines include the unique facets of pediatric end of life care, including physical age, paternalism, the cognitive and language capacity of patients, subconscious influencers of parents, and normative values of death in pediatrics. Conclusions: Although there have been strides in end of life decision-making in pediatrics, further investigation and research is needed in this field.

  17. An appraisal profile of nostalgia.

    Science.gov (United States)

    van Tilburg, Wijnand A P; Bruder, Martin; Wildschut, Tim; Sedikides, Constantine; Göritz, Anja S

    2018-03-05

    The authors aimed to (a) identify the cognitive appraisals underlying nostalgia and (b) compare nostalgia with other emotions in terms of its appraisal profile. In Study 1, participants (N = 1,125) generated narratives. Next, they reported the level of nostalgia and 31 other emotions that these narratives elicited. Subsequently, participants evaluated the narrative events on several cognitive appraisals. Events that elicited nostalgia were pleasant, involved an irretrievable loss, felt psychologically distant, and were unique-an appraisal profile that differed from all other emotions. In Study 2 (N = 1,261), the authors experimentally varied these appraisals in a vignette paradigm and measured anticipated nostalgia and 10 other emotions. Participants anticipated most nostalgia when events were pleasant, involved irretrievable loss, were distant, and were unique-a profile shared only with longing. In Study 3 (N = 994), the authors used a guided autobiographical recall procedure in which they manipulated appraisals and measured the resultant emotions. Corroborating Studies 1-2, nostalgia was most intense for events that were pleasant, irretrievably lost, temporally distant, and unique. This appraisal profile was not shared by other emotions. The findings delineate the distinguishing cognitive appraisal profile of nostalgia. Nostalgia occupies a special place in the pantheon of emotions. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

  18. Current practices in economic appraisal

    NARCIS (Netherlands)

    Mossink, J.C.M.

    2000-01-01

    By means of economic appraisal, the costs and the benefits of health, environment and safety management can be made clear, both at the national level and at the company level. As such it is a tool in advocating good practices. This paper explores the possibilities of economic appraisal for policy

  19. Impact of caregivers' unmet needs for supportive care on quality of terminal cancer care delivered and caregiver's workforce performance.

    Science.gov (United States)

    Park, Sang Min; Kim, Young Jin; Kim, Samyong; Choi, Jong Soo; Lim, Ho-Yeong; Choi, Youn Seon; Hong, Young Seon; Kim, Si-Young; Heo, Dae Seog; Kang, Ki Moon; Jeong, Hyun Sik; Lee, Chang Geol; Moon, Do Ho; Choi, Jin-Young; Kong, In Sik; Yun, Young Ho

    2010-06-01

    Family caregivers play an important role in caring for cancer patients, but the impact of caregivers' unmet needs on the quality of end-of-life (EOL) care they deliver and on their workplace performance are less understood. We identified 1,662 family caregivers of cancer patients who had died at any of 17 hospitals in Korea during 2004. The caregivers answered a telephone questionnaire about needs that were not met when they delivered terminal cancer care and how those unmet their needs affected their workplace performance; they also answered the Quality Care Questionnaire-End of Life (QCQ-EOL). Compared with caregivers who did not have unmet needs, caregivers who had unmet needs for symptom management, financial support, or community support showed poorer QCQ-EOL scores (P < 0.01). Caregivers who had unmet needs for financial support (adjusted odds ratio (aOR) = 7.55; 95% confidential interval (CI) 3.80-15.00), psychosocial support (aOR = 6.24; 95% CI 2.95-13.05), symptom management (aOR = 3.21; 95% CI 2.26-4.54), community support (aOR = 3.82; 95% CI 2.38-6.11), or religious support (aOR = 4.55; 95% CI 1.84-11.26) were more likely to experience work limitations. Caregivers of patients receiving conventional hospital care were more likely to have unmet needs for symptom management (aOR = 1.21; 95% CI 1.00-1.47), psychosocial support (aOR = 1.99; 95% CI 1.37-2.88), and religious support (aOR = 1.73; 95% CI 1.08-2.78) than those of patients receiving palliative hospice care. Caregivers' unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.

  20. The impact of cardiac arrest on the long-term wellbeing and caregiver burden of family caregivers: a prospective cohort study.

    Science.gov (United States)

    van Wijnen, Helena Gfm; Rasquin, Sascha Mc; van Heugten, Caroline M; Verbunt, Jeanine A; Moulaert, Véronique Rm

    2017-09-01

    The purpose was to gain insight in the functioning of caregivers of cardiac arrest survivors at 12 months after a cardiac arrest. Secondly, the course of the wellbeing of the caregivers during the first year was studied. Finally, factors that are associated with a higher care burden at 12 months after the cardiac arrest were investigated. A total of 195 family caregivers of cardiac arrest survivors were included. Quality of life (SF-36, EuroQol-VAS), caregiver strain (CSI) and emotional functioning (HADS, IES) were measured at two weeks, three months and one year after the cardiac arrest. Thereby, the caregiver was asked to fill out the cognitive failure questionnaire (CFQ) to evaluate their view on the cognitive status of the patient. Caregiver strain was high in 16 (15%) of the caregivers at 12 months. Anxiety was present in 33 (25%) caregivers and depression in 18 (14%) caregivers at 12 months. The repeated measures MANOVA showed that during the first year the following variables improved significantly: SF-36 domains social and mental health, role physical, role emotional and vitality, caregiver strain, HADS and IES ( Pcaregiver strain correlated significantly (explained variance 63%, P=0.03) with caregiver HADS ( P=0.01), EuroQol-VAS ( P=0.02), and the CFQ ( Pcaregivers improves during the first year up to normal levels, but caregivers with emotional problems or perceived cognitive problems at 12 months are at risk for developing a higher care burden.

  1. The role of stressors and psychosocial variables in the stress process: a study of chronic caregiver stress.

    Science.gov (United States)

    Vedhara, K; Shanks, N; Anderson, S; Lightman, S

    2000-01-01

    An investigation was conducted 1) to examine the relative importance of stressor types (ie, daily hassles, caregiving-specific stressors, and life events) on the stress response, 2) to assess the stability of relationships between psychosocial variables and stress over a 6-month period, and 3) to explore how the nature and magnitude of the contributions made by stressors and psychosocial factors to the stress process varied according to the qualitative characteristics of the stress response (ie, anxiety, depression, and stress). Fifty spousal caregivers of patients with dementia were recruited and asked to participate in a detailed psychosocial evaluation at 3-month intervals; the evaluation involved measurement of stressor frequency, psychosocial variables, and indices of the stress response (ie, anxiety, depression, and stress). The data revealed that the effects of stressors and psychosocial factors on the stress response were considerable (accounting for 49-63% of the variance in stress response measures). Furthermore, there was some evidence of stability in the effects of the stressor and mediator variables on the stress response. Specifically, the contributions of life events and caregiver difficulties were largely consistent at both 3 and 6 months, and the psychosocial factor of "reactive coping and self-appraisal" influenced all three stress response indices at both 3 and 6 months. There is some evidence of stability in the effects of stressors and psychosocial variables on the stress process over a 6-month period. However, it would also seem that the nature of the stress process differs according to the qualitative characteristics of the stress response.

  2. The cortisol awakening response in caregivers of schizophrenic offspring shows sensitivity to patient status.

    Science.gov (United States)

    Gonzalez-Bono, Esperanza; De Andres-Garcia, Sara; Moya-Albiol, Luis

    2011-01-01

    Taking care of offspring during a prolonged period of time is probably one of the most stressful life experiences for parents. The present study compares the cortisol awakening response (CAR) in 38 long-term caregivers (mothers and fathers of schizophrenic relatives) with a control group of 32 non-caregivers. Factors such as general stress, caregiver burden, patient severity, and institutionalization were studied. Although a blunted CAR was observed in caregivers in comparison with controls, this difference was not significant. Among caregivers, the absence of institutionalization for the patient is associated with a lack of CAR in caregivers in comparison with caregivers of institutionally supported patients. General stress, caregiver burden, and patient severity themselves did not favor significant changes in CAR. CAR shows greater sensitivity to institutional support than patient severity and perceived stress. Further research is needed to explain the impact of these factors on health and the psychological factors involved.

  3. The effects of conscientiousness on the appraisals of daily stressors.

    Science.gov (United States)

    Gartland, Nicola; O'Connor, Daryl B; Lawton, Rebecca

    2012-02-01

    Conscientiousness (C) is positively associated with health and longevity although the mechanisms underlying this relationship are not fully understood. Stress may play a role in explaining the C-longevity relationship. This study investigated whether C predicted the cognitive appraisals of daily stressors/hassles. Participants (N=102) completed measures of C and cognitive appraisal in relation to the most stressful hassle they had experienced in the last 7 days. Correlational analysis revealed that Total C, Order and Industriousness were positively correlated with primary appraisals, and Responsibility was positively correlated with secondary appraisals. The facets of C were then entered into hierarchical regression models, controlling for age and gender. This demonstrated that Order (β=0.27, paccounting for 15.8% of the variance. Responsibility significantly predicted secondary appraisals (β=0.44, paccounting for 16.3% of the variance. These findings indicate that higher Order and Industriousness are related to having a greater stake in daily stressors, whereas higher Responsibility is related to greater confidence in one's ability to deal with daily stressors. These results are the first demonstration that C is related to the appraisals of daily hassles and suggest that C may moderate the experience of stress in daily life. Copyright © 2011 John Wiley & Sons, Ltd.

  4. Are there individual and sibling differences in appraisals of interparental conflict?

    Science.gov (United States)

    Lucas-Thompson, Rachel G; George, Melissa W

    2017-10-01

    Despite decades of empirical literature documenting the harmful effects of frequent, intense, violent, and unresolved interparental conflict on children's adjustment, there is considerable variability in the extent to which marital conflict contributes to the development of children's emotional and behavioral problems. Past research has documented links between properties of interparental conflict itself (e.g., intensity, frequency), children's appraisals of conflict, and children's outcomes, yet less is known about the role of individual and family characteristics in predicting children's conflict appraisals. Sibling studies may be especially helpful in understanding these individual differences yet are notably lacking in marital conflict research. The current study examines individual- and family-characteristic predictors of adolescents' appraisals of conflict in a study of 153 adolescents as well as sibling similarities in conflict appraisals in a subsample of 50 pairs of siblings. Controlling for parent reports of the frequency, intensity, and resolution of interparental conflict, parent-child relationship quality and stressful life events predicted conflict appraisals. In addition, there was nonindependence of sibling appraisals of conflict properties, but self-blame and threat appraisals appeared independent across siblings. Greater discrepancies in siblings' conflict appraisals were related to more negative marital conflict and discrepancies in parent-child relationship quality, and were found in mixed-sex sibling dyads. Implications for future studies on factors that impact children's appraisals of conflict and in particular making use of sibling studies to examine shared environmental and individual influences on appraisals is highlighted. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

  5. The lived experience of caregivers of persons with heart failure: A phenomenological study.

    Science.gov (United States)

    Petruzzo, Antonio; Paturzo, Marco; Naletto, Monica; Cohen, Marlene Z; Alvaro, Rosaria; Vellone, Ercole

    2017-10-01

    Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy. To describe the lived experience of the caregivers of HF patients. A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness. Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient. The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.

  6. MAPS Appraisal Report Form

    CERN Multimedia

    HR Department

    2005-01-01

    As announced in Weekly Bulletin 48/2004, from now onwards, the paper MAPS appraisal report form has been replaced by an electronic form, which is available via EDH (on the EDH desktop under Other Tasks / HR & Training) No changes have been made to the contents of the form. Practical information will be available on the web page http://cern.ch/ais/projs/forms/maps/info.htm, and information meetings will be held on the following dates: 18 January 2005: MAIN AUDITORIUM (500-1-001) from 14:00 to 15:30. 20 January 2005: AB AUDITORIUM II (864-1-D02) from14:00 to 15:30. 24 January 2005: AT AUDITORIUM (30-7-018) from 10:00 to 11:30. Human Resources Department Tel. 73566

  7. Appraising Adaptive Management

    Directory of Open Access Journals (Sweden)

    Kai N. Lee

    1999-12-01

    Full Text Available Adaptive management is appraised as a policy implementation approach by examining its conceptual, technical, equity, and practical strengths and limitations. Three conclusions are drawn: (1 Adaptive management has been more influential, so far, as an idea than as a practical means of gaining insight into the behavior of ecosystems utilized and inhabited by humans. (2 Adaptive management should be used only after disputing parties have agreed to an agenda of questions to be answered using the adaptive approach; this is not how the approach has been used. (3 Efficient, effective social learning, of the kind facilitated by adaptive management, is likely to be of strategic importance in governing ecosystems as humanity searches for a sustainable economy.

  8. Caregivers' support needs and factors promoting resiliency after brain injury.

    Science.gov (United States)

    Kitter, Bryony; Sharman, Rachael

    2015-01-01

    This article explores the challenges, support needs and coping strategies of caregivers of people with an acquired brain injury (ABI). Semi-structured interviews were conducted with caregivers (n = 20) to explore their support services received, access barriers, utility of services, needed supports, coping strategies and factors promoting life satisfaction. The team recorded, transcribed verbatim and inductively analysed all interviews. Through thematic data analysis, three central themes were revealed: (a) barriers impeding quality-of-life, (b) support needed to improve quality-of-life and (c) factors enabling quality-of-life. All perspectives from the participants involved are synthesized to provide a rich depiction of caregivers' support needs and coping strategies. Two specific findings of interest include a negative association between severity of brain injury and caregiver's desire to direct treatment, as well as a distinct service gap in assistance for caregivers who are caring for someone with violent/offending behaviours. This study recommends short- and long-term changes, given Australia's upcoming National Disability Insurance Scheme, to increase caregiver quality-of-life, which will ultimately affect the rehabilitation outcomes of persons with ABI.

  9. Views on Lifestyle Change From Caregivers of People With Cognitive Impairment in China

    Directory of Open Access Journals (Sweden)

    Y. John Mei

    2013-08-01

    Full Text Available Lifestyle changes such as in physical exercise, social activity, and diet can mitigate cognitive decline and improve quality of life in caregivers and care recipients with cognitive impairment. However, caregiver perspectives on lifestyle change remain largely unexamined. This study compares perspectives among caregivers for those with dementia and those with mild cognitive impairment (MCI. Interviews were conducted with caregivers in two sites in China, and thematic similarities and differences were examined between the two groups. Caregivers from both groups identified exercise, social activity, and diet as healthy ways of life. Differences were found in approaching lifestyle change based on health of the care recipient. Caregivers for patients with dementia found more often that they had no time or possibility for change, while caregivers for individuals with MCI were more often hopeful about change.

  10. The Effect of a Personalized Dementia Care Intervention for Caregivers From Australian Minority Groups.

    Science.gov (United States)

    Xiao, Lily Dongxia; De Bellis, Anita; Kyriazopoulos, Helena; Draper, Brian; Ullah, Shahid

    2016-02-01

    Most caregiver interventions in a multicultural society are designed to target caregivers from the mainstream culture and exclude those who are unable to speak English. This study addressed the gap by testing the hypothesis that personalized caregiver support provided by a team led by a care coordinator of the person with dementia would improve competence for caregivers from minority groups in managing dementia. A randomised controlled trial was utilised to test the hypothesis. Sixty-one family caregivers from 10 minority groups completed the trial. Outcome variables were measured prior to the intervention, at 6 and 12 months after the commencement of trial. A linear mixed effect model was used to estimate the effectiveness of the intervention. The intervention group showed a significant increase in the caregivers' sense of competence and mental components of quality of life. There were no significant differences in the caregivers' physical components of quality of life. © The Author(s) 2015.

  11. Self-efficacy, relationship satisfaction, and social support: the quality of life of maternal caregivers of children with type 1 diabetes

    Directory of Open Access Journals (Sweden)

    Einar B. Thorsteinsson

    2017-10-01

    Full Text Available Objectives To examine maternal functioning and wellbeing as important aspects of a family’s adaptation to chronic paediatric conditions, in particular, children with diabetes. Method This cross-sectional study investigated the difference between the perceived quality of life of mothers of children with diabetes (n = 63 and mothers of children without diabetes (n = 114. The study also examined the role of self-efficacy, relationship satisfaction, number of social support providers, and satisfaction with social support in predicting quality of life. Results Mothers who had a child with diabetes had lower quality of life measured by general health, vitality, social functioning, role-emotional, and mental health than mothers that did not have a child with diabetes. Self-efficacy, relationship satisfaction, and social support were significant predictors of quality of life (mental health domain. Conclusion In order to enhance their psychological wellbeing, mothers of children with diabetes require adequate psychosocial support. Other implications for research and potential interventions are discussed.

  12. An intervention targeting fundamental values among caregivers at residential facilities: effects of a cluster-randomized controlled trial on residents' self-reported empowerment, person-centered climate and life satisfaction.

    Science.gov (United States)

    Roos, Charlotte; Silén, Marit; Skytt, Bernice; Engström, Maria

    2016-07-07

    In Sweden the national fundamental values for care of older people state that care should ensure that they can live in dignity and with a sense of well-being. Our hypothesis was that a caregiver intervention targeting the national fundamental values would improve perceived empowerment, person-centered climate and life satisfaction among older people living in residential facilities. The study was a cluster-randomized controlled trial with a pre- and one post-test design, conducted in 27 units (17 study units) at 12 residential facilities for older people in five municipalities in central Sweden. The units in each municipality were randomly assigned to intervention or control group. The caregiver intervention was carried out using an interpretative approach with eight guided face-to-face seminars, where self-reflection and dialogue were used. Data were collected using questionnaires. The number of residents was 43 (78 %) in the intervention group and 37 (71 %) in the control group. The Chi-square test and Mann-Whitney U-tests were performed to detect differences between groups and Wilcoxon signed rank tests to explore differences in change over time within groups. Furthermore, generalized estimating equation (GEE) models were used to study effects of the intervention controlling for clustering effects. Primary outcome measures were empowerment, person-centered climate and life satisfaction. In the intervention group, improvements at follow-up were found in residents' self-reported empowerment (n = 42; p = 0.001, Median difference 4.0, 95 % CI 1.5;6.0), person-centered climate (n = 42; p ≤0.001, Median difference 8.0, 95 % CI 4.5;11.4) and life satisfaction regarding the factor quality of everyday activities (n = 40; p = 0.033, Median difference 9.7, 95 % CI 1.0;21.9) while disempowerment decreased (n = 43; p = 0.018, Median difference -1.3, 95 % CI -2.0;0.0). In the control group person-centered climate decreased (n = 37; p

  13. Perfil sociodemográfico e índice de qualidade de vida de cuidadores de pessoas com deficiência física Socio-demographic profile and quality of life index for caregivers of people with physical disabilities

    Directory of Open Access Journals (Sweden)

    Larissa Coutinho de Lucena Trigueiro

    2011-09-01

    Full Text Available O objetivo do estudo foi identificar o perfil sociodemográfico e o nível de qualidade de vida de cuidadores de pessoas com deficiência física atendidas na Fundação Centro Integrado de Apoio ao Portador de Deficiência Física (FUNAD no município de João Pessoa (PB. Participaram do estudo 51 cuidadores de pessoas com deficiência física, na faixa etária de 19 a 63 anos (36,29±11,10. Para a avaliação foram utilizados dois instrumentos: um formulário estruturado, com questões sobre o perfil pessoal e social dos cuidadores e o World Health Organization Quality of Life (WHOQOL-bref, para a análise do nível de qualidade de vida. Os resultados apontaram que a maioria dos cuidadores eram mulheres (92,2%, mães (68,6%, solteiras (43,1% e haviam frequentado a escola até o Ensino Fundamental incompleto (47%. Houve significância estatística (pThe study objective was to identify the socio-demographic profile and the level of quality of life of caregivers of persons with disabilities met with the Foundation to Support Integrated Patient with Physical Disabilities (FUNAD in the city of Joao Pessoa, in the state Paraíba, Brazil. The study had 51 participants, caregivers of people with disabilities in the age group 19-63 years (36.29±11.10. For the evaluation, we used two instruments: a structured form, with questions about personal and social profiles, and World Health Organization Quality of Life (WHOQOL-bref, to analyze the level of quality of life. The results showed that most caregivers were women (92.2%, mothers (68.6%, single (43.1% and had attended up to elementary school (47%. Statistical significance (p<0.05, a positive correlation between age and time working as a caregiver present (p=0.000 and negative correlation between schooling and daily care time (p=0.009. It was found that the physical and emotional stress leads caregivers to encumber themselves, directly affecting the quality of life. We highlight the importance of

  14. The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives

    Science.gov (United States)

    Roberts, Emily; Struckmeyer, Kristopher M.

    2018-01-01

    Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, many also experience physical and emotional problems directly related to the stress and demands of daily care. One way to alleviate these demands is the growing respite care field, providing services in a variety of settings for caregiver. Through qualitative analysis from face-to-face interviews with 33 family caregivers of individuals with dementia, several themes emerged describing the path to caregiver resilience which include family dynamics, isolation, financial struggles, seeking respite, and acceptance. While much research focuses on a caregiving burden perspective, the innovation of the present study is applying the resilience framework to outcomes from respite programming. PMID:29424252

  15. Quality of life and stress in caregivers of drug-addicted people Evaluación de la calidad de vida sobrecarga en los cuidadores de química dependientes Qualidade de vida e sobrecarga de cuidados em cuidadores de dependentes químicos

    Directory of Open Access Journals (Sweden)

    Samira Reschetti Marcon

    2012-01-01

    Full Text Available OBJECTIVE: To evaluate quality of life and presence of stress in caregivers of drug-addicted people. METHODS: This cross-sectional study was carried out at four Psychosocial Care Centers in Mato Grosso. Demographic and quality of life data were collected for 109 caregivers using the Medical Outcomes Study 36 - Item Short-form, depression symptoms (Beck Depression Inventory and stress of caregivers (Caregiver Burden Scale. RESULTS: Of 109 caregivers, 55.9% were mothers with a mean age of 47.66 years; 23.8% had depressive symptoms. The SF36 scores most compromised were emotional aspects, vitality, pain and mental health. Mean stress among caregivers was 2.24. A significant correlation in quality of life, depression and stress of caregivers was seen. CONCLUSION: Findings confirmed that quality of life is compromised and stress is high among caregivers, highlighting the need for providing emotional support.OBJETIVOS: Evaluar la calidad de vida y la presencia de sobrecarga de cuidados en cuidadores de dependientes químicos. MÉTODOS: Se trata de un estudio de corte transversal, realizado en cuatro Centros de Atención Psicosocial de Mato Grosso, con 109 cuidadores. Fueron recolectados datos sociodemográficos, de calidad de vida por medio del Medical Outcomes Studies 36 - Item Short-Form, síntomas de depresión (Inventario de Depresión de Beck y sobrecarga del cuidador (Caregiver Burden Scale. RESULTADOS: De los 109 cuidadores, 55,9% eran madres, con edad promedio de 47,66 años y 23,8% presentaron síntomas depresivos. Los scores del SF36 más comprometidos fueron: aspectos emocionales, vitalidad, dolor y salud mental. El promedio general de la sobrecarga entre los cuidadores fue de 2,24. Hubo correlación significativa en las dimensiones de la calidad de vida, presencia de depresión y sobrecarga de cuidado. CONCLUSIÓN: Los hallazgos confirmaron el compromiso de la calidad de vida y alta sobrecarga de cuidado que evidencian la necesidad de

  16. What effect does participating in an assistance dog program have on the quality of life of children with Autism Spectrum Disorders and their caregivers? A systematic review of current literature

    Directory of Open Access Journals (Sweden)

    Esther Sprod

    2017-12-01

    Full Text Available The use of assistance dogs for children with Autism Spectrum Disorder is an emerging field, with interventions varying from formal assistance dog programs aimed at increasing child safety in public, to incorporating assistance dogs into therapy sessions. Previous reviews have suggested mostly positive outcomes from participating in such programs, however cited a lack of high quality studies available. This systematic review aims to answer the question: what effect does participating in an assistance dog program have on the quality of life of children with Autism Spectrum Disorders and their caregivers? After analysis, ten studies were deemed to meet the inclusion and exclusion criteria, and were included in the review. Findings suggest that participating in various Autism assistance dog programs can: 1 increase child safety in public, which in turn decreases self-reported parental stress and increases self-reported parental confidence in managing their child; 2 increase positive behaviours and decrease negative behaviours; and 3 facilitate motor, communication and social development. However, disparities were found between studies, particularly between quantitative and qualitative results, and between the quality of the projects’ design. These factors indicate that further, high quality research is still needed to support emerging evidence.

  17. Uranium-mill appraisal program

    International Nuclear Information System (INIS)

    Everett, R.J.; Cain, C.L.

    1982-08-01

    The results of special team appraisals at NRC-licensed uranium mills in the period May to November 1981 are reported. Since the Three Mile Island accident, NRC management has instituted a program of special team appraisals of radiation protection programs at certain NRC-licensed facilities. These appraisals were designed to identify weaknesses and strengths in NRC-licensed programs, including those areas not covered by explicit regulatory requirements. The regulatory requirements related to occupational radiation protection and environmental monitoring at uranium mills have been extensively upgraded in the past few years. In addition, there was some NRC staff concern with respect to the effectiveness of NRC licensing and inspection programs. In response to this concern and to changes in mill requirements, the NRC staff recommended that team appraisals be conducted at mills to determine the adequacy of mill programs, the effectiveness of the new requirements, and mill management implementation of programs and requirements. This report describes the appraisal scope and methodology as well as summary findings and conclusions. Significant weaknesses identified during the mill appraisals are discussed as well as recommendations for improvements in uranium mill programs and mill licensing and inspection

  18. Determinants of Health-Related Quality of Life in Taiwanese Middle-Aged Women Stroke Survivors.

    Science.gov (United States)

    Pai, Hsiang-Chu; Wu, Ming-Hsiu; Chang, Mei-Yueh

    Female stroke victims have a higher survival rate and experience a greater loss of quality of life than do male stroke victims. The aim of this study was to evaluate the determinants of health-related quality of life in middle-aged women stroke survivors. This study is a cross-sectional design. This cross-sectional research uses a descriptive, prospective, and correlational study design to investigate the associations between latent variables. Participants included women stroke survivors, aged 45-65 years, who were patients at a medical center in Taiwan. Participants completed an interview and a six-part questionnaire comprising the Short-Form Health Survey (SF-36), National Institutes of Health Stroke Scale, Modified Rankin Scale, Burden Scale, Chinese Health Questionnaire, and five items that pertain to the survivor's cognitive appraisal of coping. Structural equation modeling (SEM), with the use of the partial least squares (PLS) method, was used to examine the proposed conceptual model. A total of 48 dyad samples (48 female stroke survivors, mean age = 55.29; 48 caregivers, mean age = 42.71) participated in the study. Overall, women's physical functioning (PF; stroke severity), cognitive appraisal of coping, and caregiver's psychosocial functioning were the predictors, explaining 43.3% of the variance in women's health-related quality of life. We found that female stroke survivors' level of stroke severity and negative appraisal-impact of stroke are significant predictors of the stroke survivor's quality of life. In addition to assisting women in their PF rehabilitation, rehabilitation nurses also should help to develop survivors' self-care confidence as a means to avoid the recurrence of stroke.

  19. Self-reported burden among caregivers of patients with multiple sclerosis.

    Science.gov (United States)

    Gupta, Shaloo; Goren, Amir; Phillips, Amy L; Stewart, Michelle

    2012-01-01

    Multiple sclerosis (MS) and Alzheimer's disease (AD) are chronic and progressive diseases that may impose a significant burden on caregivers and patients' immediate families. Extensive research shows MS and AD caregiver burden on physical and mental health, but no direct comparisons between MS and AD caregivers have been reported in the literature. The objective of this study was to examine the extent of MS caregiver burden compared with that of noncaregivers and AD caregivers. Data were obtained from the 2009 National Health and Wellness Survey administered online to a US representative adult sample (N = 75,000). Respondents reported health status, quality of life, work productivity, health-care utilization, and caregiver status. Multivariable regressions, adjusting for key characteristics (eg, age, gender, marital status, depression), were conducted to explore differences between MS caregivers (n = 215) and noncaregivers (n = 69,224) and between MS caregivers and AD caregivers (n = 1341). The results indicated that MS caregivers had significantly greater activity impairment (P = .01), poorer mental (P = .015) and physical (P = .002) health status, lower health utility scores (P = .002), and more traditional health-care provider visits (P productivity differences were not observed across groups, possibly owing to fewer employed respondents. Thus, in this study, MS caregivers had significantly more burden than noncaregivers, and for some measures, even AD caregivers. The results reveal the hidden toll on those providing care for MS patients and highlight the need for health-care providers to recognize their burden so that appropriate measures can be implemented.

  20. Age Effects on Cognitive and Physiological Parameters in Familial Caregivers of Alzheimer's Disease Patients.

    Directory of Open Access Journals (Sweden)

    Márcio Silveira Corrêa

    Full Text Available Older familial caregivers of Alzheimer's disease patients are subjected to stress-related cognitive and psychophysiological dysfunctions that may affect their quality of life and ability to provide care. Younger caregivers have never been properly evaluated. We hypothesized that they would show qualitatively similar cognitive and psychophysiological alterations to those of older caregivers.The cognitive measures of 17 young (31-58 years and 18 old (63-84 years caregivers and of 17 young (37-57 years and 18 old (62-84 years non-caregiver controls were evaluated together with their salivary cortisol and dehydroepiandrosterone (DHEA levels, as measured by radioimmunoassays and ELISA assays of brain-derived neurotrophic factor (BDNF in serum.Although younger caregivers had milder impairments in memory and executive functions than older caregivers, their performances fell to the same or lower levels as those of the healthy older controls. Decreases in DHEA and BDNF levels were correlated with the cognitive dysfunctions observed in the older and younger caregivers, respectively. Cortisol at 10PM increased in both caregiver groups.Younger caregivers were prone to cognitive impairments similar to older caregivers, although the degree and the neuropsychological correlates of the cognitive dysfunctions were somewhat different between the two groups. This work has implications for caregiver and care-recipient health and for research on the neurobiology of stress-related cognitive dysfunctions.

  1. Caregiving in Indian Country

    Centers for Disease Control (CDC) Podcasts

    2009-12-23

    This podcast discusses the role of caregivers in Indian County and the importance of protecting their health. It is primarily targeted to public health and aging services professionals.  Created: 12/23/2009 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP).   Date Released: 12/23/2009.

  2. The influence of Chinese culture on family caregivers of stroke survivors: A qualitative study.

    Science.gov (United States)

    Qiu, Xichenhui; Sit, Janet W H; Koo, Fung Kuen

    2018-01-01

    To explore and describe the caregiving experiences of Chinese stroke caregivers. Previous research has indicated that culture can have a significant impact on the stroke caregiving experience. Moreover, scant research exists on stroke caregivers' experience within the Chinese culture. A qualitative descriptive design was used. In-depth, semistructured interviews were conducted with 25 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Content analysis was also performed. Twenty-five family caregivers of stroke survivors were recruited for the study. On average, respondents were 66 years old (range 45-82 years). Of 25 interviewees, 76% were female, 64% were spouse-caregivers and 36% were children-caregivers. Three themes reflecting the influence of Chinese culture on stroke caregiving emerged from the interviews. (i) Caregiving role perception. Informants accepted caregiving for the sick family member as an expected part of life, a culturally prescribed obligation and an expression of reciprocal love. (ii) Coping strategies. Connecting with family resources and connecting with inner strength were frequently reported coping strategies. (iii) Self-sacrifice. Informants identified self-reliance and feeling of restraint in their utilisation or access of formal caregiving service. Chinese caregivers sacrifice themselves for the care recipients regardless of the hardships and the neglect of their own health. Our findings provide a comprehensive and culturally sensitive perspective in understanding the experience of stroke caregivers in Chinese communities. Cultural and religious backgrounds were found to influence Chinese stroke caregivers' experience, coping strategies and self-sacrifice behaviour in idiosyncratic ways. Research on the practice of culture can serve as a basis for the formulation of specific policies and effective interventions for supporting stroke caregivers of different cultural backgrounds. © 2017 John

  3. Understanding Health-related Quality of Life in Caregivers of Civilians and Service Members/Veterans with Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Mental Health Measures.

    Science.gov (United States)

    Carlozzi, Noelle E; Hanks, Robin; Lange, Rael T; Brickell D Psych, Tracey A; Ianni, Phillip A; Miner, Jennifer A; French Psy D, Louis M; Kallen, Michael A; Sander, Angelle M

    2018-06-19

    To provide important reliability and validity data to support the use of the PROMIS Mental Health measures in caregivers of civilians or service members/veterans with traumatic brain injury (TBI). Patient-reported outcomes surveys administered through an electronic data collection platform. Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. 560 caregivers of individuals with a documented TBI (344 civilians and 216 military) INTERVENTION: Not Applicable MAIN OUTCOME MEASURES: PROMIS Anxiety, Depression, and Anger Item Banks RESULTS: Internal consistency for all of the PROMIS Mental Health item banks was very good (all α > .86) and three-week test retest reliability was good to adequate (ranged from .65 to .85). Convergent validity and discriminant validity of the PROMIS measures was also supported. Caregivers of individuals that were low functioning had worse emotional HRQOL (as measured by the three PROMIS measures) than caregivers of high functioning individuals, supporting known groups validity. Finally, levels of distress, as measured by the PROMIS measures, were elevated for those caring for low-functioning individuals in both samples (rates ranged from 26.2% to 43.6% for caregivers of low-functioning individuals). Results support the reliability and validity of the PROMIS Anxiety, Depression, and Anger item banks in caregivers of civilians and service members/veterans with TBI. Ultimately, these measures can be used to provide a standardized assessment of HRQOL as it relates to mental health in these caregivers. Copyright © 2018. Published by Elsevier Inc.

  4. Examining the relationships between challenge and threat cognitive appraisals and coaching behaviours in football coaches.

    Science.gov (United States)

    Dixon, Martin; Turner, Martin J; Gillman, Jamie

    2017-12-01

    Previous research demonstrates that sports coaching is a stressful activity. This article investigates coaches' challenge and threat cognitive appraisals of stressful situations and their impact on coaching behaviour, using Blascovich and Mendes' (2000) biopsychosocial model as a theoretical framework. A cross-sectional correlational design was utilised to examine the relationships between irrational beliefs (Shortened general attitude and belief scale), challenge and threat appraisals (Appraisal of life events scale), and coaching behaviours (Leadership scale for sports) of 105 professional football academy coaches. Findings reveal significant positive associations between challenge appraisals and social support, and between threat appraisals and autocratic behaviour, and a significant negative association between threat appraisals and positive feedback. Results also show that higher irrational beliefs are associated with greater threat, and lesser challenge cognitive appraisals. However, no associations were revealed between irrational beliefs and challenge cognitive appraisals. Additionally, findings demonstrate a positive relationship between age and training and instruction. Results suggest that practitioners should help coaches to appraise stressful situations as a challenge to promote positive coaching behaviours.

  5. Does caregiver well-being predict stroke survivor depressive symptoms? A mediation analysis.

    Science.gov (United States)

    Grant, Joan S; Clay, Olivio J; Keltner, Norman L; Haley, William E; Wadley, Virginia G; Perkins, Martinique M; Roth, David L

    2013-01-01

    Studies suggest that family caregiver well-being (ie, depressive symptoms and life satisfaction) may affect stroke survivor depressive symptoms. We used mediation analysis to assess whether caregiver well-being might be a factor explaining stroke survivor depressive symptoms, after controlling for demographic factors and stroke survivor impairments and problems. Caregiver/stroke participant dyads (N = 146) completed measures of stroke survivor impairments and problems and depressive symptoms and caregiver depressive symptoms and life satisfaction. Mediation analysis was used to examine whether caregiver well-being mediated the relationship between stroke survivor impairments and problems and stroke survivor depressive symptoms. As expected, more stroke survivor problems and impairments were associated with higher levels of stroke survivor depressive symptoms (P mediated by caregiver life satisfaction (29.29%) and caregiver depressive symptoms (32.95%). Although these measures combined to account for 40.50% of the relationship between survivor problems and impairments and depressive symptoms, the direct effect remained significant. Findings indicate that stroke survivor impairments and problems may affect family caregivers and stroke survivors and a high level of caregiver distress may result in poorer outcomes for stroke survivors. Results highlight the likely importance of intervening with both stroke survivors and family caregivers to optimize recovery after stroke.

  6. Emotional and social perception of main caregiver in a rural health district

    Directory of Open Access Journals (Sweden)

    Fabiola Yonte Huete

    2012-03-01

    Full Text Available Cross-sectional observational study of 50 caregivers of dependent patient immobilized. We analyzed the sociodemographic characteristics, type and characteristics of care, social, emotional and quality of life of main caregivers. Sociodemographic and care characteristics related to dependent patient immobilized was also studied. Objective: Describing the profile of dependent patient immobilized and their caregiver, and the emotional and social characteristics perceived by the main caregiver. Results: The age of dependent patient immobilized is rising particulary in women, with mental deterioration and dementia as principal diseases. The most of main caregivers are women, married women and daughters of dependent patient immobilized patients, with primary studies, in the middle age. They work almost the complete day in patient care, having less than two hour for themselves. The lack of money is the principal need felt it. The most of caregivers suffer mild to moderate stress and higher anxiety levels than general population, especially in females. Caregiver perceived quality of life is lower than general population too. Conclusions: To know the profile of dependent patient immobilized patient´s caregiver and the factors perceived burden caregiver´s, it is important developing interventions and plans to improve their quality of life related to health in order to reduce the syndrome of main caregiver.

  7. Dementia caregiver burden: reliability of the Brazilian version of the Zarit caregiver burden interview

    Directory of Open Access Journals (Sweden)

    Taub Anita

    2004-01-01

    Full Text Available The object of this article is to examine the reliability of the Brazilian version of the Zarit Caregiver Burden Interview (ZBI. The instrument is a 22-item scale assessing the extent to which caregivers view their responsibilities as having an adverse impact on their social life, health, emotional well-being, and finances. We assessed 50 primary informal caregivers of demented patients coming from 3 different health care centers, using the test-retest method. Analysis of the results showed an intraclass reliability coefficient of 0.88, while Cronbach's coefficient alpha was 0.77 for the test and 0.80 for the retest items. The Brazilian version of ZBI shows sufficient reliability, comparable to the original version.

  8. Caregiver resilience in palliative care: a research protocol.

    Science.gov (United States)

    Limardi, Stefano; Stievano, Alessandro; Rocco, Gennaro; Vellone, Ercole; Alvaro, Rosaria

    2016-02-01

    To describe a research protocol designed to formulate a conceptual framework of informal caregiver resilience in palliative care. Resilience is the ability to adapt or to improve one's own conditions following experiences of adversity. The end-of-life care provided by informal caregivers is a form of adversity because it entails objective difficulties, emotional involvement and deep levels of introspection that have been stimulated by the death event. Resilience has not yet been addressed in association with end-of-life care. This is a multicentre cross-sectional study. We will administer a questionnaire to a sample of informal end-of-life caregivers to collect data about the main psychological, behavioural and healthcare factors that impact resilience. Data analysis will include descriptive and correlational statistical techniques, multiple linear regressions and structural equation modelling. Data will be collected in multiple palliative care centres and statistical analysis will be carried out using software: SPSS version 19.0 and MPlus version 7.3. The study is supported by a grant from the Centre of Excellence for Nursing Scholarship in Italy (Research Grant number 2.13.10) that was awarded in March 2013. The study seeks to identify the predictive, mediating and moderating roles of select variables: caregivers' self-efficacy, burdens of caregiving, depression and resilience. The results of this analysis will impact the theoretical study of resilience in palliative care and will have practical implications for interventions aimed at supporting caregivers through healthcare teams. © 2015 John Wiley & Sons Ltd.

  9. The influence of ethnicity and culture on dementia caregiving: a review of empirical studies on Chinese Americans.

    Science.gov (United States)

    Sun, Fei; Ong, Rebecca; Burnette, Denise

    2012-02-01

    The purpose of this article is to pinpoint the cultural and ethnic influences on dementia caregiving in Chinese American families through a systemic review and analysis of published research findings. Eighteen publications on Chinese American dementia family caregivers published in peer-reviewed journals between 1990 and early 2011 were identified. Based on a systematic database search and review process, we found that caregivers' beliefs concerning dementia and the concept of family harmony as evidenced through the practice of filial piety are permeating cultural values, which together affect attitudes toward research and help-seeking behaviors (ie, seeking information on diagnosis and using formal services). There is also evidence to suggest that these cultural beliefs impinge on key elements of the caregiving process, including caregivers' appraisal of stress, coping strategies, and informal and formal support. The study concludes with recommendations for future research and practice with the Chinese American population.

  10. Qualidade de vida de familiares cuidadores do doente esquizofrênico Calidad de vida de familiares que cuidan de pacientes esquisofrenicos Life quality of family caregivers of schizophrenic patient

    Directory of Open Access Journals (Sweden)

    Marina Borges Teixeira

    2005-04-01

    Full Text Available Objetivou-se verificar o conceito de qualidade de vida (QV de familiares cuidadores de pacientes esquizofrênicos e identificar fatores que interferem em sua qualidade de vidas. Para tanto, foi realizada uma pesquisa exploratório-descritiva, transversal, de campo com 52 familiares cuidadores que residiam com o paciente. Concluiu-se que os familiares definiram qualidade de vida como: "ter saúde, poder trabalhar e sustentar a família" (35; "ter saúde"(9; "ter saúde, ter bons hospitais e morar em um bairro melhor"(3; "ter saúde e continuar tratando deles" (2; "ter saúde e casa própria" (2;"ter dinheiro para tratar melhor dele"(1. Entre os fatores que interferiram em suas vidas o "deixar de ir a igreja"; "não sair com amigos"; "deixar de trabalhar " e "não ter mais tempo para si mesmo" foram os que sobressaíram.Se apuntó a verificar el concepto de calidad de vida (CV de familiares que cuidam de pacientes esquisofrenicos y identificar factores que interfieren en su calidad de vida. Así, una investigación exploratorio-descriptiva y transversal fue cumplida con 52 de conserjes familiares que moram con el paciente. Se concluye que los parientes definieron la calidad de vida como: "tener la salud, trabajar y sostener a la familia" (35; "tener la salud (9; "tener la salud, tener buenos hospitales y vivir en un barrio bueno" (3; "tener la salud y continuar cuidan de ellos" (2; "tener salud y casa propia" (2; "tener el dinero para tratar bien de él" (1. Entre los factores que interfirieron en sus vidas "no ir a la iglesia"; "no salir con los amigos"; "no salir para trabajar" y "no tener más tiempo por su cuidado" fueran los más evidentes.It was aimed to verify the concept of life quality (LQ of family caregivers of schizophrenic patient bearers and to identify the factors that interfere in their quality lives. For that an exploratory-descriptive, and traverse research was accomplished with 52 family caregivers that live with the patient. It

  11. Exploring the influence of Internet-based caregiver support on experiences of isolation for older spouse caregivers in rural areas: a qualitative interview study.

    Science.gov (United States)

    Blusi, Madeleine; Kristiansen, Lisbeth; Jong, Mats

    2015-09-01

    Many older spouse caregivers are tied to the home by their caring duties and feel isolated. The values of supporting older caregivers are well known. In rural areas with long distances and decline in essential services, attending caregiver support groups can be difficult. Using Internet-based services can provide an opportunity for rural caregivers to participate in caregiver support, regardless of geographical distances and without the need for physical presence. This study aimed to explore how Internet-based caregiver support may influence the experience of isolation among older spouse caregivers in rural areas. An intervention study where 63 older rural caregivers received an Internet-based caregiver support service. A qualitative interview study based on 31 interviews with open-ended questions, analysed using latent content analysis. Two themes represent the findings from the study: Expanding the concept of place and Developing networks. Even though participants still spent their days in the house, they experienced that daily life was being spent in a variety of places, both physically, virtually and emotionally. The Internet-based support service provided them with a tool to reconnect with family and develop new friends. Internet-based caregiver support may reduce the experience of isolation for spouse caregivers in rural areas. Nurses played a crucial part in the development, by encouraging, educating and inspiring caregivers and supporting their independence. Internet-based services ought to be an option for caregiver support in rural areas as it may reduce feelings of isolation for older spouse caregivers. © 2014 John Wiley & Sons Ltd.

  12. 'Post-deployment appraisal' and the relationship with stress and psychological health in Australian veterans.

    Science.gov (United States)

    Wright, Breanna; Forbes, Andrew; Kelsall, Helen; Clarke, David; Ikin, Jill; Sim, Malcolm

    2015-12-01

    Understanding how veterans appraise their post-deployment experiences could provide insight into better assisting their deployment transitions. We aimed to assess the factor structure of positive and negative post-deployment appraisals in Australian veterans and to examine the resultant factors in their relationship with military stress and psychological health. Questions capturing post-deployment attitudes were developed by the researchers in collaboration with veterans. The questions were administered to 1938 veterans and the results factor analysed. The relationships between post-deployment appraisal, military stress and psychological health were examined using Structural Equation Modelling. A three-factor solution was found for the post-deployment appraisal questions; representing personal development, lack of recognition, and appreciation of life and country. Military stress was associated with the three factors and psychological health. The three factors were weakly to moderately associated with psychological health. Mediation between military stress and psychological health by any post-deployment appraisal factor was minimal. Post-deployment appraisal measures three important attitudes and concerns of veterans after deployment. Military stress is associated with the post-deployment appraisal factors. However, the factors did not mediate the relationship between military stress and psychological health. These factors provide insight into how veterans appraise their complex array of post-deployment experiences, and may provide useful in regard to transitions and integration into civilian life.

  13. Physical disability contributes to caregiver stress in dementia caregivers.

    Science.gov (United States)

    Bruce, David G; Paley, Glenys A; Nichols, Pamela; Roberts, David; Underwood, Peter J; Schaper, Frank

    2005-03-01

    Previous findings of studies on the impact of physical illness on caregiver health have been inconsistent. The authors wanted to determine whether physical disability, as determined by the SF-12 survey that provides information on both physical and mental health problems, contributes to caregiver stress. The authors interviewed 91 primary caregivers (aged 38-85 years) of persons with dementia who had been referred by their family physicians for the first time for formal support services or memory evaluation. Caregivers completed the SF-12 version of the Medical Outcomes Study Short Form Health Survey that generates Mental Component Summary (MCS) and Physical Component Summary (PCS) scores and reported on caregiver stress and concurrent medical conditions and medications. Most caregivers reported stress (76.9%), having medical conditions (72.4%), or taking medications (67%). The MCS but not the PCS scores were significantly lower than community norms, indicating an excess of disability due to mental health problems. Nevertheless, 40.7% had PCS scores indicating some degree of physical disability. Using multiple logistic regression analysis, PCS scores but not the presence of medical problems were independently associated with caregiver stress. Chronic disability as assessed by SF-12 PCS scores is independently associated with caregiver stress. These data suggest that caregivers of persons with dementia should be assessed for disabling physical conditions and mental health problems. In addition, reducing the impact of physical disability could ameliorate caregiver stress.

  14. Appraisal of literature reviews on end-of-life care for minority ethnic groups in the UK and a critical comparison with policy recommendations from the UK end-of-life care strategy

    Directory of Open Access Journals (Sweden)

    Pool Robert

    2011-06-01

    Full Text Available Abstract Background Evidence of low end-of-life (EoL care service use by minority ethnic groups in the UK has given rise to a body of research and a number of reviews of the literature. This article aims to review and evaluate literature reviews on minority ethnic groups and EoL care in the UK and assess their suitability as an evidence base for policy. Methods Systematic review. Searches were carried out in thirteen electronic databases, eight journals, reference lists, and grey literature. Reviews were included if they concerned minority ethnic groups and EoL care in the UK. Reviews were graded for quality and key themes identified. Results Thirteen reviews (2001-2009 met inclusion criteria. Seven took a systematic approach, of which four scored highly for methodological quality (a mean score of six, median seven. The majority of systematic reviews were therefore of a reasonable methodological quality. Most reviews were restricted by ethnic group, aspect of EoL care, or were broader reviews which reported relevant findings. Six key themes were identified. Conclusions A number of reviews were systematic and scored highly for methodological quality. These reviews provide a good reflection of the primary evidence and could be used to inform policy. The complexity and inter-relatedness of factors leading to low service use was recognised and reflected in reviews' recommendations for service improvement. Recommendations made in the UK End-of-Life Care Strategy were limited in comparison, and the Strategy's evidence base concerning minority ethnic groups was found to be narrow. Future policy should be embedded strongly in the evidence base to reflect the current literature and minimise bias.

  15. Appraisal of literature reviews on end-of-life care for minority ethnic groups in the UK and a critical comparison with policy recommendations from the UK end-of-life care strategy.

    Science.gov (United States)

    Evans, Natalie; Meñaca, Arantza; Andrew, Erin Vw; Koffman, Jonathan; Harding, Richard; Higginson, Irene J; Pool, Robert; Gysels, Marjolein

    2011-06-02

    Evidence of low end-of-life (EoL) care service use by minority ethnic groups in the UK has given rise to a body of research and a number of reviews of the literature. This article aims to review and evaluate literature reviews on minority ethnic groups and EoL care in the UK and assess their suitability as an evidence base for policy. Systematic review. Searches were carried out in thirteen electronic databases, eight journals, reference lists, and grey literature. Reviews were included if they concerned minority ethnic groups and EoL care in the UK. Reviews were graded for quality and key themes identified. Thirteen reviews (2001-2009) met inclusion criteria. Seven took a systematic approach, of which four scored highly for methodological quality (a mean score of six, median seven). The majority of systematic reviews were therefore of a reasonable methodological quality. Most reviews were restricted by ethnic group, aspect of EoL care, or were broader reviews which reported relevant findings. Six key themes were identified. A number of reviews were systematic and scored highly for methodological quality. These reviews provide a good reflection of the primary evidence and could be used to inform policy. The complexity and inter-relatedness of factors leading to low service use was recognised and reflected in reviews' recommendations for service improvement. Recommendations made in the UK End-of-Life Care Strategy were limited in comparison, and the Strategy's evidence base concerning minority ethnic groups was found to be narrow. Future policy should be embedded strongly in the evidence base to reflect the current literature and minimise bias.

  16. Grandparent Caregiving and Psychological Well-Being Among Chinese American Older Adults-The Roles of Caregiving Burden and Pressure.

    Science.gov (United States)

    Xu, Ling; Tang, Fengyan; Li, Lydia W; Dong, Xin Qi

    2017-07-01

    Though ample research on grandparent caregiving and psychological well-being outcomes exist in Western literature, little attention has been focused on Chinese American grandparents. Based on role enhancement and role strain theories, this study examined grandparent caregiving and psychological well-being among Chinese American older adults and tested whether caregiving burden or pressure from adult children moderated such association. We used the data from the Population Study of ChINese Elderly in Chicago (PINE), a population-based survey of community-dwelling Chinese older adults in the Greater Chicago area. Grandparents with grandchildren younger than 16 years old were selected for present study (N = 2,775). Negative binominal regression and logistic regression models were used to test the relationships of grandparent caregiving time and psychological well-being measured by depressive symptoms and quality of life. Grandparents reported an average of 11.96 hours a week for caring for grandchildren. Caregiving time had a significantly negative association with depressive symptoms, but not with quality of life. The association between grandparent caregiving and depressive symptoms was moderated by the perception of caregiving burden. No moderating effect of caregiving pressure from adult children was found. More time spending on grandparent caregiving is generally beneficial to Chinese American grandparents' psychological well-being, thus supporting role enhancement theory. However, this association depends on whether this experience is a burden to the grandparents, therefore role strain theory is also supported. Policies and programs are discussed to address the grandparenting experience in the Chinese American older adults. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  17. Problems experienced by informal caregivers of individuals with heart failure: An integrative review.

    Science.gov (United States)

    Grant, Joan S; Graven, Lucinda J

    2018-04-01

    The purpose of this review was to examine and synthesize recent literature regarding problems experienced by informal caregivers when providing care for individuals with heart failure in the home. Integrative literature review. A review of current empirical literature was conducted utilizing PubMed, CINAHL, Embase, Sociological Abstracts, Social Sciences Full Text, PsycARTICLES, PsycINFO, Health Source: Nursing/Academic Edition, and Cochrane computerized databases. 19 qualitative, 16 quantitative, and 2 mixed methods studies met the inclusion criteria for review. Computerized databases were searched for a combination of subject terms (i.e., MeSH) and keywords related to informal caregivers, problems, and heart failure. The title and abstract of identified articles and reference lists were reviewed. Studies were included if they were published in English between January 2000 and December 2016 and examined problems experienced by informal caregivers in providing care for individuals with heart failure in the home. Studies were excluded if not written in English or if elements of caregiving in heart failure were not present in the title, abstract, or text. Unpublished and duplicate empirical literature as well as articles related to specific end-stage heart failure populations also were excluded. Methodology described by Cooper and others for integrative reviews of quantitative and qualitative research was used. Quality appraisal of the included studies was evaluated using the Joanna Briggs Institute critical appraisal tools for cross-sectional quantitative and qualitative studies. Informal caregivers experienced four key problems when providing care for individuals with heart failure in the home, including performing multifaceted activities and roles that evolve around daily heart failure demands; maintaining caregiver physical, emotional, social, spiritual, and financial well-being; having insufficient caregiver support; and performing caregiving with uncertainty

  18. Factors affecting caregiver burden of terminally ill adults in the home setting - A systematic review.

    Science.gov (United States)

    He Leow, Mabel Qi; Wai Chi Chan, Sally

    Background: Terminally ill people have complex physical and psychological needs. As a result, their caregivers may experience high levels of burden, and some caregivers are unable to cope with the burden. Thus, it is important to determine the various factors that may influence caregiver burden, so that healthcare professionals may implement strategies to reduce caregiver burden. In this review, "caregiver burden" was expanded to include "caregiver stress" and "caregiver strain", as the two terms were related to caregiver burden. The objective of this systematic review was to identify the factors that may influence caregiver burden of a terminally ill adult in the home setting. Types of participants: This review considered adult participants (above age 18) who were the main caregivers of a terminally ill adult in the home setting, and providing care for the terminally ill person at the point of participation in the study.Types of intervention: There was no specific intervention of interest for the study.Types of outcomes: The focus of study was the factors that affected caregiver burden of the terminally ill person.Types of studies: Quantitative studies such as randomised controlled trials (RCTs), controlled clinical trials (CCTs), interrupted time series (ITSs), controlled before after designs (CBAs), observational design (cohort, case-control), and descriptive surveys were included in the study. This review was limited to papers in English and Mandarin. A literature search from the inception of the database to October 2010 was conducted using major electronic databases. The databases used were CINAHL, MEDLINE, PsycINFO (Ovid), Scopus, SpringerLink, ScienceDirect, Web of Science, Mosby's Nursing Consult, Mednar: Deep web medical search, Proquest Dissertations and Theses and China Journal Net.Methodological quality: The quality of the potential studies was assessed by two independent reviewers using the critical appraisal checklists for descriptive/case studies

  19. HOW APPRAISERS DEVELOP FAIR VALUE

    Directory of Open Access Journals (Sweden)

    MIROSLAV ŠKODA

    2012-01-01

    Full Text Available Management is responsible for its own financial decisions. If we take into account, that fair value concept was shown in financial crisis as something that does not work anymore in this way; there is a big need to develop it for the future. Non-professional readers of financial statements believe, however, that company financials are the work of the public accounting firm that had signed the audit certificate. The main reason for bringing this point up is that when companies disclose Fair Value (FV information in their financial statements, they are taking responsibility for the values disclosed. Management may often be encouraged to utilize the services of an outside professional, but at the end of the day, the outside appraiser is a hired gun. Although the appraiser has to take responsibility for his own work, hiring the appraiser does not absolve management of its ultimate responsibility. The obverse of this is also true. Management does not have to hire the appraiser to develop any fair value disclosures made in the financial statements. Developing FV information is not recommended as a do-it yourself undertaking, there is nothing in Generally Accepted Accounting Principles (GAAP or Securities Exchange Commission (SEC regulations, however, that requires an outside appraiser.

  20. Predictors of Secondary Role Strains Among Spousal Caregivers of Older Adults With Functional Disability.

    Science.gov (United States)

    Polenick, Courtney A; DePasquale, Nicole

    2018-01-08

    Aging spouses commonly care for a partner with functional disability, but little is known about how spousal caregiving may impact different life domains. This study evaluated how caregiving characteristics are associated with secondary role strains among spousal caregivers. This cross-sectional study examined 367 spousal caregivers and their partners from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Hierarchical regressions were estimated to determine how caregiver background factors (sociodemographics, health conditions) along with primary objective (care activities, care recipient health conditions, and dementia status) and subjective (emotional caregiving difficulties, role overload) stressors are linked to care-related valued activity restriction, negative caregiving relationship quality, and care-related family disagreements. Gender differences were considered. After accounting for all predictors, older caregivers and caregivers providing more help with activities of daily living and health system interactions (e.g., scheduling appointments) were more likely to report activity restriction, whereas caregivers with more emotional difficulties reported higher negative caregiving relationship quality. Role overload was positively associated with all three secondary strains. For husbands only, caring for a partner with more chronic conditions was linked to higher negative caregiving relationship quality and caring for a partner with dementia was associated with a greater likelihood of family disagreements. Secondary role strains may develop through similar and unique pathways for caregiving wives and husbands. Further research is needed to identify those who could benefit from support in managing their care responsibilities alongside other life areas. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  1. Challenges and Strategies for Hospice Caregivers: A Qualitative Analysis.

    Science.gov (United States)

    Oliver, Debra Parker; Demiris, George; Washington, Karla T; Clark, Carlyn; Thomas-Jones, Deborah

    2017-08-01

    Family caregivers of hospice patients are responsible for the day-to-day care of their loved ones during the final months of life. They are faced with numerous challenges. The purpose of this study was to understand the challenges and coping strategies used by hospice caregivers as they care for their family members. This study is a secondary analysis of data from an attention control group in a large randomized controlled trial testing a cognitive behavioral intervention with hospice caregivers. Audiotaped interviews were coded with initial themes and combined into final categories of caregiving challenges and strategies for managing the hospice caregiving experience. Caregivers shared narratives discussing challenges that included their frustrations with patient care issues, emotional challenges, frustrations with various health care systems, financial problems, and personal health concerns. They also discussed coping strategies involving patient care, self-care, and emotional support. The coping techniques were both problem and emotion based. There is a need for interventions that focus on strengthening both problem-based and emotional-based coping skills to improve the caregiving experience. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  2. Medical and psychosocial predictors of caregiver distress and perceived burden following traumatic brain injury.

    Science.gov (United States)

    Davis, Lynne C; Sander, Angelle M; Struchen, Margaret A; Sherer, Mark; Nakase-Richardson, Risa; Malec, James F

    2009-01-01

    To determine whether caregivers' medical and psychiatric histories, coping style, and social support predict global distress and perceived burden. Correlational, cohort study. A total of 114 caregivers of persons with moderate to severe traumatic brain injury, assessed 1 year postinjury. Ratings of caregivers' medical and psychiatric history; Disability Rating Scale; Ways of Coping Questionnaire; Multidimensional Scale of Perceived Social Support; Brief Symptom Inventory; and Modified Caregiver Appraisal Scale. Caregivers' medical and psychiatric histories predicted global distress, after accounting for education, sex, income, and relationship, as well as disability of the person with injury. Increased use of escape-avoidance as a coping strategy was related to increased distress. Perceived burden was predicted by disability in the person with injury, use of escape-avoidance, and perceived social support. Caregivers' preinjury functioning is more predictive of global distress, whereas the functioning of the person with injury is more predictive of injury-related burden. Caregivers' medical and psychiatric histories are important considerations when targeting interventions; global stress management strategies may be as important as assisting with injury-related issues.

  3. Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review.

    Science.gov (United States)

    Stansfeld, Jacki; Stoner, Charlotte R; Wenborn, Jennifer; Vernooij-Dassen, Myrra; Moniz-Cook, Esme; Orrell, Martin

    2017-08-01

    Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice. A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties. Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory. There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.

  4. Intimate personal violence and caregiving: Influences on physical and mental health in middle-aged women.

    Science.gov (United States)

    Ferreira, Pablo; Loxton, Deborah; Tooth, Leigh R

    2017-08-01

    To investigate if women with a history of having experienced intimate partner violence (IPV) who undertook caregiving would experience worse mental and physical health compared to those without caregiving roles. IPV, caregiving history and data on covariates were collected between 1996 and 2010 from 8453 participants in the Australian Longitudinal Study on Women's Health aged between 45 and 65 over the course of the study. Regression analyses were used to analyse the association of IPV and caregiving (categorised as IPV+caregiving, IPV+no caregiving, no IPV+caregiving, no IPV+no caregiving), with and without adjustment for covariates, on mental and physical health-related quality of life (HRQOL), depressive symptoms and perceived stress, measured in 2010. Experiencing IPV and being a caregiver was associated with poor health outcomes on three of the four outcomes (depressive symptoms, OR 2.08, 95% CI 1.58, 2.75; stress, OR 2.11, 95% CI 1.55, 2.87; physical HRQOL β -2.39, 95% CI -3.34, -1.44; all p≤0.001, fully adjusted) compared with not experiencing IPV or caregiving. On these outcomes, IPV and caregiving combined had a stronger association than IPV or caregiving separately. For mental HRQOL, a weaker association was found (OR 1.41 95% CI 1.02, 1.95, fully adjusted, p=0.04). This paper provides evidence for the cumulative health impact of stressful life events, both those that are perpetrated against an individual (violence) and those undertaken with a degree of personal agency (caregiving). The findings underscore the need to understand the drivers of poor health, for clinicians to ask about life circumstances of patients experiencing poor health, and for the provision of referral pathways for complex cases. Copyright © 2017 Elsevier B.V. All rights reserved.

  5. Validation of the Chinese version of the Modified Caregivers Strain Index among Hong Kong caregivers: an initiative of medical social workers.

    Science.gov (United States)

    Chan, Wallace Chi Ho; Chan, Christopher L F; Suen, Margaret

    2013-11-01

    Family caregivers may often experience caregiving stress and burden. To systematically assess this issue, medical social workers may need to use a brief and valid measurement in their practice. In the Hong Kong Chinese context, one additional challenge is to examine whether a measurement developed in the West is valid for Hong Kong Chinese caregivers. Thus, medical social workers in Hong Kong initiated this research study to validate the Chinese version of the Modified Caregiver Strain Index (C-M-CSI). A total of 223 Chinese caregivers of patients with various chronic illnesses were recruited for this validation study. C-M-CSI demonstrated good reliability (Cronbach's alpha coefficient = .91), concurrent validity with the Chinese version of the Caregiver Burden Inventory, and discriminant validity with the Chinese version of the Meaning in Life Questionnaire. Factor analysis yielded a single factor as the original M-CSI, which explained 49 percent of variance. Construct validity was shown by differentiating spousal and nonspousal caregivers, as well as caregivers of patients with and without behavioral problems. C-M-CSI is recommended as a brief and valid measurement that can be used by medical social workers in assessing the caregiving strain of Chinese caregivers of patients in Hong Kong.

  6. Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver's relationship to the patient

    DEFF Research Database (Denmark)

    Lund, Line; Ross, Lone; Petersen, Morten Aagaard

    2014-01-01

    BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers' experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and t...

  7. Caregiver Burden in Patients Receiving Ranibizumab Therapy for Neovascular Age Related Macular Degeneration.

    Directory of Open Access Journals (Sweden)

    Rishma Gohil

    Full Text Available To assess the caregiver burden and factors determining the burden in patients receiving ranibizumab therapy for neovascular AMD (nAMD.This is a cross-sectional questionnaire survey of 250 matched patient caregiver dyads across three large ophthalmic treatment centres in United Kingdom. The primary outcome was the subjective caregiver burden measured using caregiver reaction assessment scale (CRA. Objective caregiver burden was determined by the caregiver tasks and level of care provided. The factors that may predict the caregiver burden such as the patient's visual acuity of the better eye and vision related quality of life, demographics, satisfaction and support provided by the healthcare and the health status of the dyads were also collected and assessed in a hierarchical regression model.The mean CRA score was 3.2±0.5, similar to the score reported by caregivers for atrial fibrillation who require regular hospital appointments for monitoring their thromboprophylaxis. Caregiver tasks including accompanying for hospital appointments for eye treatment and patient's visual acuity in the better eye were the biggest contributors to the caregiver burden hierarchical model explaining 18% and 11% of the variance respectively.Ranibizumab therapy for nAMD is associated with significant caregiver burden. Both disease impact and treatment frequency contributed to the overall burden.

  8. A systematic review of systematic reviews on interventions for caregivers of people with chronic conditions.

    Science.gov (United States)

    Corry, Margarita; While, Alison; Neenan, Kathleen; Smith, Valerie

    2015-04-01

    To evaluate the effectiveness of interventions to support caregivers of people with selected chronic conditions. Informal caregivers provide millions of care hours each week contributing to significant healthcare savings. Despite much research evaluating a range of interventions for caregivers, their impact remains unclear. A systematic review of systematic reviews of interventions to support caregivers of people with selected chronic conditions. The electronic databases of PubMed, CINAHL, British Nursing Index, PsycINFO, Social Science Index (January 1990-May 2014) and The Cochrane Library (Issue 6, June 2014), were searched using Medical Subject Heading and index term combinations of the keywords caregiver, systematic review, intervention and named chronic conditions. Papers were included if they reported a systematic review of interventions for caregivers of people with chronic conditions. The methodological quality of the included reviews was independently assessed by two reviewers using R-AMSTAR. Data were independently extracted by two reviewers using a pre-designed data extraction form. Narrative synthesis of review findings was used to present the results. Eight systematic reviews were included. There was evidence that education and support programme interventions improved caregiver quality of life. Information-giving interventions improved caregiver knowledge for stroke caregivers. Education, support and information-giving interventions warrant further investigation across caregiver groups. A large-scale funded programme for caregiver research is required to ensure that studies are of high quality to inform service development across settings. © 2014 John Wiley & Sons Ltd.

  9. [Autism spectrum disorder and evaluation of perceived stress parents and professionals: Study of the psychometric properties of a French adaptation of the Appraisal of Life Event Scale (ALES-vf)].

    Science.gov (United States)

    Cappe, É; Poirier, N; Boujut, É; Nader-Grosbois, N; Dionne, C; Boulard, A

    2017-08-01

    Autism and related disorders are grouped into the category of « Autism Spectrum Disorder » (ASD) in the DSM-5. This appellation reflects the idea of a dimensional representation of autism that combines symptoms and characteristics that vary in severity and intensity. Despite common characteristics, there are varying degrees in intensity and in the onset of symptoms, ranging from a disability that can be very heavy with a total lack of communication and major disorders associated with the existence of a relative autonomy associated, sometimes, with extraordinary intellectual abilities. Parents are faced with several difficult situations, such as sleep disturbances, agitation, shouting, hetero violence, self-harm, learning difficulties, stereotyping, lack of social and emotional reciprocity, inappropriate behavior, etc. They can feel helpless and may experience stress related to these developmental and behavioral difficulties. The heterogeneity of symptoms, the presence of behavioral problems, the lack of reciprocity and autonomy also represent a challenge for practitioners in institutions and teachers at school. The objective of this research is to present the validation of a French translation of the Appraisal of Life Events Scale (ALES-vf) from Ferguson, Matthex and Cox, specifically adapted to the context of ASD. ALES was originally developed to operationalize the three dimensions of perceived stress (threat, loss and challenge) described by Lazarus and Folkman. ALES-vf was initially translated into French and adapted to the situation of parents of children with ASD. It was subsequently administered to 343 parents, 150 paramedical professionals involved with people with ASD, and 155 teachers from an ordinary school environment and from specialized schools, welcoming in their classroom at least one child with ASD. An exploratory factor analysis performed on data from 170 parents highlighted two exploratory models with four and three factors, slightly different

  10. Affecting others: social appraisal and emotion contagion in everyday decision making.

    Science.gov (United States)

    Parkinson, Brian; Simons, Gwenda

    2009-08-01

    In a diary study of interpersonal affect transfer, 41 participants reported on decisions involving other people over 3 weeks. Reported anxiety and excitement were reliably related to the perceived anxiety and excitement of another person who was present during decision making. Risk and importance appraisals partially mediated effects of other's anxiety on own anxiety as predicted by social appraisal theory. However, other's emotion remained a significant independent predictor of own emotion after controlling for appraisals, supporting the additional impact of more direct forms of affect transfer such as emotion contagion. Significant affect-transfer effects remained even after controlling for participants' perceptions of the other's emotion in addition to all measured appraisals, confirming that affect transfer does not require explicit registration of someone else's feelings. This research provides some of the clearest evidence for the operation of both social appraisal and automatic affect transfer in everyday social life.

  11. A Systematic Review of Psychosocial Interventions to Cancer Caregivers

    Directory of Open Access Journals (Sweden)

    Fang Fu

    2017-05-01

    Full Text Available Objective: To systematically review the effect of psychosocial interventions on improving QoL, depression and anxiety of cancer caregivers.Methods: We conducted a systematic review of psychosocial interventions among adult cancer caregivers published from 2011 to 2016. PsycINFO, PubMed, Proquest, Cochrane Library, Embase, Applied Social Sciences Index and Abstracts (ASSIA, Cumulative Index to Nursing and Allied Health Literature, Social Sciences Citation Index (SSCI and EBSCO, China National Knowledge Infrastructure (CNKI and WANFANG were searched. Inclusion criteria were: randomized controlled trails (RCTs; psychosocial intervention to cancer caregivers; psychosocial health indicators including quality of life, depression or anxiety.Results: 21 studies out of 4,666 identified abstracts met inclusion criteria, including 19 RCTs. The intervention modes fell into the following nine categories: family connect intervention, self-determination theory-based intervention (SDT, cognitive behavioral therapy (CBT, emotion-focused therapy (EFT, comprehensive health enhancement support system (CHESS, FOCUS programme, existential behavioral therapy (EBT, telephone interpersonal counseling (TIP-C, problem-solving intervention (COPE.Conclusion: paired-intervention targeting self-care and interpersonal connections of caregivers and symptom management of patients is effective in improving quality of life and alleviating depression of cancer caregivers while music therapy is helpful for reducing anxiety of cancer caregivers.

  12. What do multiple sclerosis patients and their caregivers perceive as unmet needs?

    OpenAIRE

    Lorefice, Lorena; Mura, Gioia; Coni, Giulia; Fenu, Giuseppe; Sardu, Claudia; Frau, Jessica; Coghe, Giancarlo; Melis, Marta; Marrosu, Maria Giovanna; Cocco, Eleonora

    2013-01-01

    Background Multiple sclerosis (MS) has a major impact on the physical, psychological and social life of patients and their families. The aim of this study was to evaluate the different perceptions of patients and caregivers about management of MS, particularly about the same items, to gather information to ameliorate the care of patients. Methods We evaluated what MS patients and caregivers perceive as unmet needs and compared patients? opinions with caregivers? opinions using a multidimensio...

  13. Caregiver burden from caring for impaired elderly: a cross-sectional study in rural Lower Egypt

    OpenAIRE

    Salama, Rasha

    2012-01-01

    Background: increased life expectancy and an aging population have made home care for the elderly a major responsibility for families. Caring for a chronically ill or physically disabled person has been referred to as physically or emotionally stressful, placing the caregiver at a heightened risk of burden. This study aimed to identify factors related to caregiving burden among caregivers who care for their disabled older family members. Methods: a cross sectional descriptive study was conduc...

  14. Women's caregiving and paid work: causal relationships in late midlife.

    Science.gov (United States)

    Pavalko, E K; Artis, J E

    1997-07-01

    Care of an ill or disabled family member or friend is disproportionately done by women and typically is done in late midlife. Because this is-also a time in the life course when women's labor force participation peaks, many women faced with caregiving demands have to decide how to balance them with their employment. In this study we use the National Longitudinal Survey (NLS) of Mature Women to examine the causal relationship between employment and caring for an ill or disabled friend or relative over a three-year period. We find that employment does not affect whether or not women start caregiving, but that women who do start are more likely to reduce employment hours or stop work. Thus, the causal relationship between employment and caregiving in late midlife is largely unidirectional, with women reducing hours to meet caregiving demands.

  15. 9 CFR 50.9 - Appraisals.

    Science.gov (United States)

    2010-01-01

    ... part must be appraised at their fair market value by an appraiser selected by APHIS. APHIS may decline... veterinarian in charge may grant a reasonable time for the presentation of their registration papers. [67 FR...

  16. Using Expectancy Theory to Explain Performance Appraisal ...

    African Journals Online (AJOL)

    pc

    2018-03-05

    Mar 5, 2018 ... appraisal conducting style, the relation between the performance appraisal system and task ... the article first explains the theory model which is based expectancy theory. II. ... which in return lead to rewards. According to [12],.

  17. Taking Care of You: Support for Caregivers

    Science.gov (United States)

    ... For Parents / Taking Care of You: Support for Caregivers What's in this article? The Caregiver's Dilemma Tips for Caregivers More Tips Getting Help ... there are moments when the sheer magnitude of what you're up against is so ... not alone. The Caregiver's Dilemma When you're the caregiver of a ...

  18. Family caregiving in schizophrenia: domains and distress

    NARCIS (Netherlands)

    Schene, A. H.; van Wijngaarden, B.; Koeter, M. W.

    1998-01-01

    This article focuses on (1) the dimensionality of the caregiving concept; (2) the relation between the identified caregiving dimensions and characteristics of the patient, the caregiver, and their relationship; and (3) the relation between caregiving dimensions and caregiver distress. Findings are

  19. First Contact: the intersection of demographics, knowledge, and appraisal of treatment at the initial infertility visit

    Science.gov (United States)

    CHILDRESS, Krista J.; LAWSON, Angela K.; GHANT, Marissa S.; MENDOZA, Gricelda; CARDOZO, Eden R.; CONFINO, Edmond; MARSH, Erica E.

    2015-01-01

    Objective To determine the impact of the initial infertility visit on treatment-related knowledge, patient anxiety, and appraisals of treatment. Study Design Prospective survey. Setting Academic medical center. Patients 234 English-speaking women, ages 18-50, attending their first infertility visit Intervention(s) Participants completed a survey assessing health literacy, knowledge, anxiety, and appraisals of the treatment process before and after their infertility visit. Main Outcome Measure(s) 1) Knowledge of infertility and treatment and, 2) Anxiety and appraisal scores. Results Most participants were white and earned >$100,000/year and had at least a college education. Baseline knowledge of reproductive anatomy, ART, and fertility factors was modest, but improved after the initial visit. Factors associated with higher knowledge included higher education and income, White or Asian ethnicity, and English as their primary language. Patient appraisals of treatment represented by the positive (Challenge) and negative (Threat and Loss) subscale scores on the Appraisal of Life Events (ALE) scale, changed from the pre-visit survey to the post-visit survey. Negative appraisals of treatment and anxiety scores decreased and positive appraisals of treatment increased after the initial visit. Lower knowledge was associated with higher positive appraisal scores lower health literacy was associated with higher anxiety and appraisal scores (positive and negative) post-visit. Black women had higher Challenge scores compared to White and Asian women. Hispanic women had higher anxiety scores than non-Hispanic women. Conclusions Infertility patients have modest baseline knowledge of fertility and infertility treatment. The initial infertility visit can improve this knowledge and decrease both negative appraisals of treatment and anxiety levels. Differences in knowledge and appraisal were seen across ethnic groups and other demographic variables. Physicians should individualize

  20. 12 CFR 564.3 - Appraisals required; transactions requiring a State certified or licensed appraiser.

    Science.gov (United States)

    2010-01-01

    ... 12 Banks and Banking 5 2010-01-01 2010-01-01 false Appraisals required; transactions requiring a State certified or licensed appraiser. 564.3 Section 564.3 Banks and Banking OFFICE OF THRIFT SUPERVISION, DEPARTMENT OF THE TREASURY APPRAISALS § 564.3 Appraisals required; transactions requiring a State...

  1. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

    Directory of Open Access Journals (Sweden)

    Barbara Gomes

    Full Text Available BACKGROUND: Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. OBJECTIVES: 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. METHODS: Search methods: We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria: We included randomised controlled trials (RCTs, controlled clinical trials (CCTs, controlled before and after studies (CBAs and interrupted time series (ITSs evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis: One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs for the primary outcome (death at home. MAIN RESULTS: We identified 23 studies (16 RCTs, 6 of high quality, including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure

  2. Experiences and concerns of family caregivers providing support to people with dementia: a cross-cultural perspective.

    Science.gov (United States)

    Ivey, Susan L; Laditka, Sarah B; Price, Anna E; Tseng, Winston; Beard, Renée L; Liu, Rui; Fetterman, David; Wu, Bei; Logsdon, Rebecca G

    2013-11-01

    We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, 'What is your life like as a caregiver?' in nine focus groups (n = 75) with Filipino and non-Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a 'good person' or 'saint' and emphasized that caregiving made them stronger.

  3. Resilience in family caregivers of persons with acquired brain injury.

    Science.gov (United States)

    Las Hayas, Carlota; López de Arroyabe, Elena; Calvete, Esther

    2015-08-01

    The authors' purpose was to develop the Questionnaire of Resilience in Caregivers of Acquired Brain Injury (QRC-ABI) and explore its psychometric properties The QRC-ABI was developed to measure the process of resilience, including resilient factors that, according to the literature, are the most relevant for caregivers. This is a cross-sectional study of Spanish primary caregivers of individuals with ABI. It included 237 caregivers (77.6% women and 21.1% men) who completed the QRC-ABI, the Posttraumatic Growth Inventory (Weiss & Berger, 2006), the World Health Organization Quality of Life-BREF (Skevington, Lotfy, O'Connell, & the WHOQOL Group, 2004) assessment, and the Positive Aspects of Caregiving (Tarlow et al., 2004) assessment. An item pool of 36 items was developed, from which 17 were finally selected based on a consensus among researchers and adequate symmetry indexes and kurtoses. Confirmatory factor analysis of the QRC-ABI confirmed a hierarchical solution in which 4 resilience dimensions were explained by a broader general resilience factor. The internal consistency of each scale was >.80. Convergent validity was supported through positive correlations of the QRC-ABI with quality of life, positive aspects of caregiving, and posttraumatic growth, and a negative correlation with perceived burden. The new QRC-ABI showed good reliability and validity. Our results are consistent with previous studies that have argued that resilient qualities are important for a healthy and positive adaptation to the challenging adversities faced by caregivers of individuals with ABI. Future interventions based on resilience should promote these factors in caregivers. (c) 2015 APA, all rights reserved).

  4. "I Do the Best I Can": Caregivers' Perceptions of Informal Caregiving for Older Adults in Belize

    Science.gov (United States)

    Vroman, Kerryellen; Morency, Jamme

    2011-01-01

    In this first study of informal caregiving for older adults in Belize, 29 caregivers described their experiences of caregiving, how they perceived and managed the role, and what critical resources they needed. The three main themes identified in the caregiver interviews were "the experiences of caregivers, the rewards of caregiving, and…

  5. Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups.

    Science.gov (United States)

    Aoun, Samar M; Deas, Kathleen; Howting, Denise; Lee, Gabriel

    2015-01-01

    A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Carer Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs [corrected]. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers' feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation

  6. Appraisal of family doctors: an evaluation study.

    NARCIS (Netherlands)

    Lewis, M.I.; Elwyn, G.; Wood, F.

    2003-01-01

    BACKGROUND: Appraisal has evolved to become a key component of workforce management. However, it is not clear from existing proposals for appraisal of doctors whether employers, health authorities or primary care organisations should take responsibility for appraisal processes. AIMS: To evaluate the

  7. 7 CFR 4279.144 - Appraisals.

    Science.gov (United States)

    2010-01-01

    ... value of the collateral. All real property appraisals associated with Agency guaranteed loanmaking and... appraise the property in question. All appraisals will include consideration of the potential effects from... value of the collateral. For additional guidance and information concerning the completion of real...