Otitis Media and Caregiver Quality of Life

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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...

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

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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.

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

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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.

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.

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…

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

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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.

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

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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.

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

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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.

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

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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.

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

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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.

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.

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

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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.

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

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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.

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

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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.

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.

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

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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.

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

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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.

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

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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.

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

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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

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...

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

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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

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

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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.

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

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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

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.

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.

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

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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…

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

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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.

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

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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.

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

Directory of Open Access Journals (Sweden)

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.

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

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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.

Quality of Life of Caregivers of Children with Autism in Qatar

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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…

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

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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.

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

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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.

[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.

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

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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.

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

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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.

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

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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…

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.

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

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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

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

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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.

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.

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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.

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

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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.

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

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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.

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

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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.

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

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...

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

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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.

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

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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

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.

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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.

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

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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.

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

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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.

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

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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

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

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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.

Quality of life in caregivers of ADHD children and Diabetes patients

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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.

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

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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.

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

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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.

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

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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.

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.

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

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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.

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

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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.

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

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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.

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

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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

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

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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

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

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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.

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

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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.

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

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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.

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

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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.

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

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... 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 ...

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

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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.

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

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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.

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

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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…

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

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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).

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

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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.

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

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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.

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

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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.

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

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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.

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

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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.

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

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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.

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.

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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

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.

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

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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.

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

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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.

Caregivers as the fulcrum of care for mentally ill in the community: The urban rural divide among caregivers and care giving facilities

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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.

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

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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.

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

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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

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

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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…

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

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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

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 .

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

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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.

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

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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.

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.

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

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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

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

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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.

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

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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.

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

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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.

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

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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

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

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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.

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

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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.

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

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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

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.

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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.

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

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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.

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

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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.

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

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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.

Caregiving and Its Resulting Effects—The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore

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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.

Caregiving and Its Resulting Effects-The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore.

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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.

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.

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

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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

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

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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.

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

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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.

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

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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.

Determinants of Health-Related Quality of Life in Taiwanese Middle-Aged Women Stroke Survivors.

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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.

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

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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.

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.

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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.

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

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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.

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.

Combining Employment and Caregiving: An Intricate Juggling Act.

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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…

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

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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

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

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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

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

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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.

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.

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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

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

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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.

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

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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.

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

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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.

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...

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

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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.

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.

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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.

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\

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

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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.

Effects of Adult Day Care on Daily Stress of Caregivers: A Within-Person Approach

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Kim, Kyungmin; Femia, Elia E.; Almeida, David M.; Savla, Jyoti; Molenaar, Peter C. M.

2011-01-01

Objectives. This article examined exposure to and appraisal of care-related stressors associated with use of adult day services (ADS) by family caregivers of individuals with dementia. Methods. Using a within-person withdrawal design (A-B-A-B), we compared caregivers’ exposure to and appraisal of behavior problems on days their relative attended and did not attend ADS. Participants were 121 family caregivers enrolling a relative with dementia in an ADS program. Daily assessments were obtained prior to the person's attending ADS for the first time and after 1 and 2 months of attendance on days the person attended and did not attend ADS. Results. Total exposure to stressors and stress appraisals decreased significantly over time on ADS days compared with non-ADS days. Most of this difference was accounted by the time the person with dementia was away from the caregiver, but there were also significant reductions in behavioral problems during the evening and improved sleep immediately following ADS use. Discussion. ADS use lowered caregivers’ exposure to stressors and may improve behavior and sleep for people with dementia on days they have ADS. The study highlights how a within-person design can identify the effects of an intermittent intervention, such as ADS. PMID:21642593

Caregiver reports of patient-initiated violence in psychosis.

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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.

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.

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

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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

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

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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

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.

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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.

Psychometric evaluation of the shortened resilience scale among Alzheimer's caregivers.

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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.

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

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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.

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

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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.

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.

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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

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

Directory of Open Access Journals (Sweden)

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.

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.

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.

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

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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.

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.

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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.

Problems experienced by informal caregivers of individuals with heart failure: An integrative review.

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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

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.

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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

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

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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.

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

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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

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

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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

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

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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

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

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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.

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

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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.

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

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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.

Well-being of Sibling Caregivers: Effects of Kinship Relationship and Race.

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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.

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

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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.

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

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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.

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.

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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.

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

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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…

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

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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.

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.

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

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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.

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

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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.

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

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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

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

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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.

Moderating role of positive aspects of caregiving in the relationship between depression in persons with Alzheimer's disease and caregiver burden.

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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.

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

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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

Caregivers' support needs and factors promoting resiliency after brain injury.

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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.

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

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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.

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

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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

Medical and psychosocial predictors of caregiver distress and perceived burden following traumatic brain injury.

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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.

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

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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.

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

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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.

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

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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...

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

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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

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

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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.

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…

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...

Self-administered acupressure for symptom management among Chinese family caregivers with caregiver stress: a randomized, wait-list controlled trial.

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Tiwari, Agnes; Lao, Lixing; Wang, Amy Xiao-Min; Cheung, Denise Shuk Ting; So, Mike Ka Pui; Yu, Doris Sau Fung; Lum, Terry Yat Sang; Yuk Fung, Helina Yin King; Yeung, Jerry Wing Fai; Zhang, Zhang-Jin

2016-10-28

Caregiving can be stressful, potentially creating physical and psychological strain. Substantial evidence has shown that family caregivers suffer from significant health problems arising from the demands of caregiving. Although there are programs supporting caregivers, there is little evidence regarding their effectiveness. Acupressure is an ancient Chinese healing method designed to restore the flow of Qi (vital energy) by applying external pressure to acupoints. A randomized, wait-list controlled trial was developed to evaluate the effectiveness of a self-administered acupressure intervention on caregiver stress (primary objective) and stress-related symptoms of fatigue, insomnia, depression, and health-related quality of life (secondary objectives) in Chinese caregivers of older family members. Two hundred Chinese participants, aged ≥ 21 years, who are the primary caregivers of an older family member and screen positive for caregiver stress and symptoms of fatigue/insomnia/depression will be recruited from a community setting in Hong Kong. Subjects will be randomized to receive either an immediate treatment condition (self-administered acupressure intervention) or a wait-list control condition. The self-administered acupressure intervention will include (i) an individual learning and practice session twice a week for 2 weeks, (ii) a home follow-up visit once a week for 2 weeks, and (iii) 15-min self-practice twice a day for 6 weeks. The wait-list control group will receive the same acupressure training after the intervention group has completed the intervention. We hypothesize that Chinese family caregivers in the intervention group will have lower levels of caregiver stress, fatigue, insomnia, depression, and higher health-related quality of life after completion of the intervention than participants in the wait-list control group. This study will provide evidence for the effectiveness of self-administered acupressure in reducing stress and improving

The role of stressors and psychosocial variables in the stress process: a study of chronic caregiver stress.

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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.

Wellbeing, mental health knowledge and caregiving experiences of siblings of people with psychosis, compared to their peers and parents: an exploratory study.

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Sin, Jacqueline; Murrells, Trevor; Spain, Debbie; Norman, Ian; Henderson, Claire

2016-09-01

The wellbeing and caregiving experiences of family carers supporting people with psychosis has garnered increasing interest. Evidence indicates that the burden of caregiving can adversely impact on parents' wellbeing, few studies have investigated whether this is also the case for siblings, who often take on caregiving responsibilities. This exploratory study investigated the wellbeing, mental health knowledge, and appraisals of caregiving in siblings of individuals with psychosis. Using a cross-sectional design, 90 siblings completed three validated questionnaires: Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS), Mental Health Knowledge Schedule (MAKS), and Experience of Caregiving Inventory (ECI). Data obtained were compared to general population norms and parent-carers' scores. Multi-variable regression analyses were conducted to examine relationships between questionnaire scores and demographic characteristics including age, sex, birth order, marital status, accommodation and educational level. Siblings, especially sisters, had significantly poorer mental wellbeing, compared to normative scores. Conversely, they had better mental health knowledge. Siblings and parent-carers had comparable high levels of negative appraisals of caregiving experiences, but siblings reported more satisfaction with personal experiences and relationships. Education level was a significant predictor for better mental health knowledge; there were no other relationships between siblings' demographic factors and outcomes. Study findings suggest that siblings have overlapping as well as distinct needs, compared to parent-carers. Further research is required to better understand siblings' experiences so as to inform development of targeted interventions that enhance wellbeing and caregiving capacity.

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

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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.

Theories of Health Care Decision Making at the End of Life: A Meta-Ethnography.

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Kim, Kyounghae; Heinze, Katherine; Xu, Jiayun; Kurtz, Melissa; Park, Hyunjeong; Foradori, Megan; Nolan, Marie T

2017-08-01

The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models ( n = 14) followed by family-centered ( n = 11) and behavioral change models ( n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.

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

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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.

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

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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

Perceptions of family caregivers of cancer patients about the challenges of caregiving: a qualitative study.

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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.

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

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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

Elder care and the impact of caregiver strain on the health of employed caregivers.

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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.

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

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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 �

Caregiving for ill dependents and its association with employee health risks and productivity.

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Burton, Wayne N; Chen, Chin-Yu; Conti, Daniel J; Pransky, Glenn; Edington, Dee W

2004-10-01

This study examined the loss of productivity and health risk status associated with employees who provide care for an ill dependent. A total of 16,651 employees (23% response rate) of a major financial services company completed a confidential Health Risk Appraisal (HRA) that included an eight-item version of the Work Limitations Questionnaire and a self-report of time missed from work during the previous 2 weeks to care for an ill dependent. A total of 10.6% of the respondents reported an average of 7.7 hours absent from work during the previous 2-week period to provide care for an ill dependent. Caregiving also was associated with a significant increase in the number of health risks for the employee. As the demand for caregiving time increased, caregivers reported a significant increase in work limitations. Caregiving for an ill dependent is associated with increased absenteeism and significant work limitations while on the job. Programs and work organization that helps employees balance their caregiving responsibilities for ill dependents may have a positive effect on health and productivity.

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

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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.

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.

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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.

Psychometric properties of Persian version of the Caregiver Burden Scale in Iranian caregivers of patients with spinal cord injury.

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Farajzadeh, Ata; Akbarfahimi, Malahat; Maroufizadeh, Saman; Rostami, Hamid Reza; Kohan, Amir Hassan

2018-02-01

To investigate the psychometric properties of the Persian version of Caregiver Burden Scale (CBS) in caregivers of patients with spinal cord injury. This is a cross-sectional study. After a forward-backward translation, the CBS was administered to 110 caregivers of patients with spinal cord injury (men = 60, women = 50). Factor structure was evaluated by confirmatory factor analysis. The Internal consistency and test-retest reliability of the CBS were examined using Cronbach's α and the intraclass correlation coefficient, respectively. Construct validity was assessed by examining the relationship among CBS and the World Health Organization Quality of Life, and the Beck Depression Inventory. The results of confirmatory factor analysis provided support for a five-factor model of CBS. All subscales of CBS revealed acceptable internal consistency (0.698-0.755), except for environment subscale (0.559). The CBS showed adequate test-retest reliability for its subscales (0.745-0.900). All subscales of CBS significantly correlated with both Beck Depression Inventory and World Health Organization Quality of Life, confirming construct validity. The Persian version of the CBS is a valid and reliable measure for assessing burden of care in caregivers of patients with spinal cord injury. Implications for Rehabilitation Spinal cord injury leads to depression, high levels of stress and diminished quality of life due to the high physical, emotional, and social burdens in caregivers. Persian version of the Caregiver Burden Scale is a valid and reliable tool for assessing burden in Iranian caregivers of patients with spinal cord injury.

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

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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.

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

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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

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

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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.

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

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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.

Gender Differences in Dementia Spousal Caregiving

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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.

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

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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

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

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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.

Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study.

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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.

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

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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.

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

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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.

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

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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

The influence of ethnicity and culture on dementia caregiving: a review of empirical studies on Chinese Americans.

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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.

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

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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.

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

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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...

Grandparent Caregiving and Psychological Well-Being Among Chinese American Older Adults-The Roles of Caregiving Burden and Pressure.

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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.

Impact of caregivers' unmet needs for supportive care on quality of terminal cancer care delivered and caregiver's workforce performance.

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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.

Emotional and social perception of main caregiver in a rural health district

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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.

Does caregiver well-being predict stroke survivor depressive symptoms? A mediation analysis.

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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.

Exploring oral literacy in communication with hospice caregivers.

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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.

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

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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

What Knowledge and Skills Do Caregivers Need?

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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…

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

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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

Caregiver burden in Alzheimer's disease: Moderation effects of social support and mediation effects of positive aspects of caregiving.

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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.

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.

Psychometric properties of the Valued Living Questionnaire Adapted to Dementia Caregiving.

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Romero-Moreno, R; Gallego-Alberto, L; Márquez-González, M; Losada, A

2017-09-01

Caring for a relative with dementia is associated with physical and emotional health problems in caregivers. There are no studies analysing the role of personal values in the caregiver stress process. This study aims to analyse the psychometric properties of the Valued Living Questionnaire Adapted to Caregiving (VLQAC), and to explore the relationship between personal values and stressors, coping strategies and caregiver distress. A total of 253 individual interviews with caregivers of relatives with dementia were conducted, and the following variables were assessed: personal values, stressors, cognitive fusion, emotional acceptance, depression, anxiety, and satisfaction with life. An exploratory factor analysis and hierarchical regression analyses were carried out. Two factors were obtained, Commitment to Own Values and Commitment to Family Values which explain 43.42% of variance, with reliability coefficients (Cronbach's alpha) of .76 and .61, respectively. Personal values had a significant effect on emotional distress (depression and anxiety) and satisfaction with life, even when controlling for socio-demographic variables, stressors and coping strategies. Results suggest that the personal values construct of dementia caregivers is two-dimensional. The personal values of the caregivers play an important role in accounting for distress and satisfaction with life in this population.

The burden on informal caregivers of people with bipolar disorder.

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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

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

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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.

Towards a better understanding of caregiver distress in early psychosis: a systematic review of the psychological factors involved.

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Jansen, Jens Einar; Gleeson, John; Cotton, Sue

2015-02-01

We sought to review empirical studies of psychological factors accounting for distress in caregivers of young people with early psychosis. Following the PRISMA guidelines, we included studies that empirically tested psychological models of caregiver distress in early psychosis by searching the following databases up until March 2014: PsycINFO, EMBASE and Cochrane Central Register of Controlled Trials (CENTRAL). This was followed by additional manual searches of reference lists and relevant journals. The search identified 15 papers describing 13 studies together comprising 1056 caregivers of persons with early psychosis. The mean age of caregivers was 47.2years (SD=9.8), of whom 71.5% were female and 74.4% were parents. Nine different psychological variables were examined in the included studies, which were categorised in the following non-mutually exclusive groups: coping, appraisal/attribution and interpersonal response. There was considerable data to support the link between distress and psychological factors such as avoidant coping, appraisal and emotional over-involvement. However, the possibilities of drawing conclusions were limited by a number of methodological issues, including cross-sectional data, small sample sizes, confounding variables not being accounted for, and a wide variation in outcome measures. The strengths of the review were the systematic approach, the exclusion of non-empirical papers and the rating of methodological quality by two independent raters. Limitations were that we excluded studies published in languages other than English, that data extraction forms were developed for this study and hence not tested for validity, and that there was a potential publication bias in favour of significant findings. A better grasp of the psychological factors accounting for caregiver distress early in the course of illness may help us understand the trajectory of distress. This is an important step in preventing long-term distress in caregivers and

Cancer Caregiver: Perceived Benefits of Technology.

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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.

Caregiver resilience in palliative care: a research protocol.

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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.

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.

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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

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

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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.

Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review.

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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.

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

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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

Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

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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

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

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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).

Prevalence and predictors of anxiety and depression among family caregivers of cancer patients: a nationwide survey of patient-family caregiver dyads in Korea.

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Park, Boyoung; Kim, So Young; Shin, Ji-Yeon; Sanson-Fisher, Robert W; Shin, Dong Wook; Cho, Juhee; Park, Jong-Hyock

2013-10-01

This study aimed to identify the prevalence and predictors of anxiety and depression among family caregivers of patients with cancer in Korea. A national, multicenter, cross-sectional survey was conducted with 897 family caregivers. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression in patient-family caregiver dyads. The prevalence of anxiety in family caregivers was 38.1 %:20.3 % reported mild anxiety, 13.3 % reported moderate anxiety, and 4.6 % reported severe anxiety. The prevalence of depression was 82.2 %:40.4 % reported mild depression, 25.5 % reported moderate depression, and 16.3 % reported severe depression. Family caregivers who were younger, were caring for male patients, or had a low quality of life (QOL) in relation to three of the variables measured in the Korean Caregiver Quality of Life Index-Cancer (CQOLC-K): burden, disturbance, and financial concerns reported increased anxiety. Becoming unemployed during caregiving, being the spouse of a patient and having low QOL in relation to three of the variables measured by the CQOLC-K: burden, disturbance, and positive adaptation were associated with depression among family caregivers. The predictive validity of the selected variables were 0.861 (95 % CI: 0.844-0.892) for anxiety and 0.794 (95 % CI: 0.751-0.828) for depression. Family caregivers of patients with cancer experienced high levels of anxiety and depression. Socio-demographic factors and QOL were predictors of anxiety and depression in family caregivers.

Dementia caregiver burden: reliability of the Brazilian version of the Zarit caregiver burden interview

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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.

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

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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.

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

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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

Informal Caregivers Assisting People with Multiple Sclerosis

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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

Caregiver burden of Mexican dementia patients: the role of dysexecutive syndrome, sleep disorders, schooling and caregiver depression.

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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.

Work-Related Goal Appraisals and Stress during the Transition from Education to Work

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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…

Positive effects of a cognitive-behavioral intervention program for family caregivers of demented elderly

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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.

Formal appraisal of undergraduate medical students: is it worth the effort?

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Murdoch-Eaton, Deborah G; Levene, Malcolm I

2004-02-01

Medical student stress is most often related to difficulties of adjusting to university academic standards, and work-social life balance. Faculty systems identify academically failing students for counselling, whilst the majority of students do not have opportunities for individual discussion about progress. This study reports a pilot formal appraisal process for first-year undergraduates. Preparatory material required students to reflect on their academic performance, factors contributing to their university life and satisfaction with career choice. Individual appraisal sessions were held with trained, experienced senior faculty staff, with completion of an appraisal record to document agreed outcomes. Individualized study skills advice was the commonest documented outcome on appraisal records. Students were overwhelmingly positive about the experience, reporting both enhanced perceptions of faculty and reduced anxiety about academic performance. Medical schools have responsibilities to consider ways to optimize students' performance; attainment can be related more to personal and motivational factors than academic ability.

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

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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…

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

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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.

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.

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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.

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...

Family caregiver communication in oncology: advancing a typology.

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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.

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'

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.

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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.

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

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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

Views on Lifestyle Change From Caregivers of People With Cognitive Impairment in China

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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.

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

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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

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.

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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.

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

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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

Review of informal care. Discovering the primary caregiver

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María Pilar Catalán Edo

2012-03-01

Full Text Available Introduction. The concept of informal care is complex and multidimensional. Caring involves tasks, relationships, feelings and costs. Women socialization as family welfare providers become them into “health agents” but not “health subjects”. Method. A cross-sectional study regarding the informal care situation during the last decade was performed. The profile of the caregiver and how this role had influenced in his the quality of life was analyzed. Several searches were performed at the following electronic databases: Cochrane Plus, Pubmed, OSM, ODS, RISG, IMSERSO, using the following terms: Gender identity, caregivers, inequality, and home care services. 40 articles were included. Results. The primary caregiver profile is a middle-aged woman, housewife, with low education level and ties of kinship with the person who is cared. It is the daughter who mostly takes this role, followed by the spouse. They perceive that their life is conditioned by this task. Care activity has important health implications for people who perform it, pointing out the negative impact on psychological health, which causes stress and anxiety and overload. Social support is directly related to psychological welfare, and it affects positively to their quality of life. Caring causes positive effects on the caregiver but they are rarely studied. Discussion. The landscape of care in the last ten years has changed a little. Formal services’ is minority. Studies focused exclusively on female caregivers generate biased information.

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.

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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.

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

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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.

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

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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

Effects of appraisal training on responses to a distressing autobiographical event.

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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.

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

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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.

A Systematic Review of Psychosocial Interventions to Cancer Caregivers

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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.

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

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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

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...

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

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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.

Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study.

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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.

The impact of cardiac arrest on the long-term wellbeing and caregiver burden of family caregivers: a prospective cohort study.

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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.

A Qualitative Study of Family Caregiver Experiences of Managing Incontinence in Stroke Survivors.

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Chien-Ning Tseng

Full Text Available Incontinence is a common problem faced by family caregivers that is recognized as a major burden and predictor of institutionalization. However, few studies have evaluated the experiences of family caregivers caring for stroke survivors with incontinence.To describe experiences of caregivers managing incontinence in stroke survivors.This qualitative descriptive study employed a grounded-theory approach.Semi-structured in-depth interviews with ten family caregivers of stroke survivors with incontinence were conducted during 2011. Audiotaped interviews were transcribed and analyzed using content analysis.Data analysis identified four themes: chaos, hypervigilance, exhaustion, and creating a new life. There were nine related subcategories: fluster, dirtiness, urgency, fear of potential health-hazard, physically demanding and time-consuming, mentally draining, financial burden, learning by doing, and attitude adjustment. Together, these described a process of struggling to cope with the care of stroke survivors with urinary/fecal incontinence. Of the four categories, "creating a new life" developed gradually over time to orient caregivers to their new life, while the other three categories occurred in a chronological order.The research highlighted unique caring experiences of family caregivers of stroke patients, which focused solely on the 'incontinence issue'. Understanding these experiences may help nurses provide better support and resources for family caregivers when caring for stroke survivors with incontinence.

Validation of the Chinese version of the Modified Caregivers Strain Index among Hong Kong caregivers: an initiative of medical social workers.

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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.

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...

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.

Self-transcendence, spiritual perspective, and sense of purpose in family caregiving relationships: a mediated model of depression symptoms in Korean older adults.

Science.gov (United States)

Kim, Suk-Sun; Hayward, R David; Reed, Pamela G

2014-09-01

This study used structural equation modeling to test the mediated model of late-life depression to understand the mechanisms that account for the direct and indirect effects of spiritual variables and purpose in life on depression within the context of Korean family caregiving relationships. A secondary analysis study design used data from a study that tested a theory of family interdependence of 157 Korean elder-family caregiver dyads in Seoul, Korea. Both caregivers' and elders' self-transcendence was positively related to their own sense of purpose in life. However, only elders' spiritual perspective was related to purpose in life. Also, elders' purpose in life was positively associated with caregivers' purpose in life. Furthermore, there was a strong negative relationship between elders' purpose in life and their depressive symptoms, but there was not a significant negative relationship between caregivers' purpose in life and elders' depressive symptoms. Last, elders' purpose in life mediated the negative effects of elders' self-transcendence and spiritual perspective and of caregivers' self-transcendence and purpose in life on elders' depression. The findings suggest that purpose in life for both the caregiver and elder played an important role in elders' depression. Self-transcendence also was related to decreased depression in elders. It is suggested that more attention be given to caregiver and elder purpose in life in developing interventions to reduce or avoid elder depression in Korean elders.

'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.

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.

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

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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

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

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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

Determinants of patient-family caregiver congruence on preferred place of death in taiwan.

Science.gov (United States)

Tang, Siew Tzuh; Chen, Cheryl Chia-Hui; Tang, Woung-Ru; Liu, Tsang-Wu

2010-08-01

Patient-family caregiver congruence on preferred place of death not only increases the likelihood of dying at home but also contributes significantly to terminally ill cancer patients' quality of life. To examine the determinants of patient-family caregiver congruence on the preferred place of death in Taiwan. Patient-family caregiver dyads (n=1,108) were surveyed on preferences and needs for end-of-life (EOL) care. Determinants of congruence on preferences were identified by multivariate logistic regression. Patient-caregiver dyads achieved 78.1% agreement on the preferred place of death. The kappa coefficient of congruence was 0.55 (95% confidence interval [CI]=0.50, 0.60). The extent of patient-family caregiver congruence on preferred place of death increased with the patient's higher functional dependence (adjusted odds ratio [AOR] and 95% CI=1.04 [1.02, 1.05]), higher patient-rated importance for dying at preferred place of death (AOR [95% CI]=1.60 [1.43, 1.79]), and having a spousal caregiver (AOR [95% CI]=1.62 [1.14, 2.31]). Other determinants of patient-family caregiver congruence included patient age (AOR [95% CI]=1.01 [1.00, 1.03]), patient-family concordance on preferred EOL care options (AOR=1.68-1.73), patient knowledge of prognosis (AOR [95% CI]=0.68 [0.48, 0.97]), and impact of caregiving on the family caregiver's life (AOR [95% CI]=0.98 [0.96, 0.99]). Increasing patient-family congruence on preferred place of death not only requires knowledge of the patient's prognosis and advance planning by both parties but also depends on family caregivers endorsing patient preferences for EOL care options and ensuring that supporting patients dying at home does not create an intolerable burden for family caregivers. Copyright (c) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Caregiver Soothing Behaviors After Immunization and Infant Attachment: A Longitudinal Analysis.

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Hillgrove-Stuart, Jessica; Pillai Riddell, Rebecca; Flora, David B; Greenberg, Saul; Garfield, Hartley

2015-01-01

There were 2 primary objectives to the current study: (1) to relate caregiver behavior trajectories across immunization appointments over the first year of life to subsequent infant attachment and (2) to relate caregiver behavior trajectories within each immunization appointment over the first year of life to subsequent infant attachment. A subsample of 130 caregivers and their infants were recruited from a sample of 760 caregivers who were part of an ongoing longitudinal cohort that videotaped infants' 2-, 4-, 6-, and 12-month immunization appointments. This subsample of caregivers and their infants (n = 130) were invited to participate in an assessment of attachment when infants were between 12 and 18 months of age at the local children's hospital. Caregiver proximal soothing behaviors were the only caregiver behaviors postimmunization that were related to subsequent infant attachment. Higher frequencies of caregiver proximal soothing at 12 months were related to infants' organized attachment, whereas steeper decreases in proximal soothing across the first year were associated with disorganized infant attachment. In addition, when caregivers engaged in proximal soothing for longer after their 12 month olds' immunizations, these infants were more likely to be secure or organized in their attachment. These results provide empirical support for the ecological validity of studying infant attachment in a pediatric pain context. The pediatric "well-baby" visit may provide a potential opportunity to feasibly integrate brief infant mental health screening and intervention.

What do multiple sclerosis patients and their caregivers perceive as unmet needs?

Science.gov (United States)

Lorefice, Lorena; Mura, Gioia; Coni, Giulia; Fenu, Giuseppe; Sardu, Claudia; Frau, Jessica; Coghe, Giancarlo; Melis, Marta; Marrosu, Maria Giovanna; Cocco, Eleonora

2013-11-15

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. We evaluated what MS patients and caregivers perceive as unmet needs and compared patients' opinions with caregivers' opinions using a multidimensional questionnaire. The questionnaire was specifically designed for the study, taking into account different aspects of the global care perceived by patients and care givers, such as information about MS, medical treatment and rehabilitation, patients' relationships with medical staff and their psychological and social life. We administered the questionnaire to 497 patients and 206 caregivers. Results showed that the majority of participants were satisfied with medical staff but expressed a desire that staff be more forthcoming with information about MS. As for medical treatment concerns, more patients found there to be useful a multidisciplinary approach than caregivers did. Both required psychological support for patients but patients felt a greater need for it at the time of diagnosis, whereas caregivers felt it was required post-diagnosis. Both reported significant strains on patient relationships at work but no effect on other social interactions. A better understanding of MS patient needs, starting from the point of view of patients and caregivers, could have a great impact on quality of life and on management of the disease.

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

Activities developed to the personal empowerment of the family caregiver with aphasia

Directory of Open Access Journals (Sweden)

Isabela Ecker Dresch

2017-06-01

Full Text Available The caregiver in a family may be exposed to several stressful events resultant from the care process. In cases of caregivers of individuals with aphasia, they can perform tasks beyond the basic daily functions. Performing functions for managing the subject's relationships and assuming for themselves the role of interpreter. Understanding the importance of the family caregiver for the individual with aphasia, the present study aims to report activities carried out in the Group of Caregivers of the Extension Project "Assistance in the Construction of a Support Network for Amateur Subjects of the Itajaí Area" at UNIVALI. The activities carried out were of a therapeutic, educational and health promotion domain. Based on the participants' reports, the results showed that the recovery of self-care is important towards improving the quality of life of the caregiver and the quality of life of the aphasic subject.

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.

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).

Associations between advanced cancer patients' survival and family caregiver presence and burden.

Science.gov (United States)

Dionne-Odom, J Nicholas; Hull, Jay G; Martin, Michelle Y; Lyons, Kathleen Doyle; Prescott, Anna T; Tosteson, Tor; Li, Zhongze; Akyar, Imatullah; Raju, Dheeraj; Bakitas, Marie A

2016-05-01

We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality-of-life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log-rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02-2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23-5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44-5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14-0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01-1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival. © 2016 The Authors. Cancer Medicine published by

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…

Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer.

Science.gov (United States)

Ugalde, Anna; Krishnasamy, Meinir; Schofield, Penelope

2013-06-01

Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer. The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care. Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported. This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity. Copyright © 2012 John Wiley & Sons, Ltd.

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.

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.

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.

Attachment avoidance, but not anxiety, minimizes the joys of caregiving.

Science.gov (United States)

Nelson-Coffey, S Katherine; Borelli, Jessica L; River, Laura M

2017-10-01

Perhaps unlike other social roles that people may hold, caring for children offers opportunities for both immense joy and incredible frustration. Yet what predicts how parents will feel during caregiving experiences? In the current study, we examined parents' (N = 152) positive emotion, negative emotion, and felt meaning during caregiving using the Day Reconstruction Method. In addition, we tested attachment anxiety and avoidance as predictors of parents' emotion during caregiving relative to their other daily experiences. We found that attachment avoidance was associated with elevated negative emotion and reduced positive emotion and meaning in life across the entire day, whereas attachment anxiety was associated with elevated negative emotion and marginally greater meaning in life, but not positive emotion, across the entire day. Furthermore, caregiving was associated with greater positive emotion and meaning, but not negative emotion, compared to parents' other daily activities. Finally, attachment avoidance, but not anxiety, was associated with lower levels of positive emotion, negative emotion, and felt meaning during caregiving compared to other daily activities. These findings are consistent with other evidence that attachment avoidance is associated with deactivation of emotion in close relationships and suggest that attachment avoidance minimizes the joys of parenting.

Caregiver-Provided Physical Therapy Home Programs for Children with Motor Delay: A Scoping Review.

Science.gov (United States)

Gorgon, Edward James R

2018-06-01

Caregiver-provided physical therapy home programs (PTHP) play an important role in enhancing motor outcomes in pediatric patient populations. This scoping review systematically mapped clinical trials of caregiver-provided PTHP that were aimed at enhancing motor outcomes in children who have or who are at risk for motor delay, with the purpose of (1) describing trial characteristics; (2) assessing methodologic quality; and (3) examining the reporting of caregiver-related components. Physiotherapy Evidence Database (PEDro), Cochrane CENTRAL, PubMed, Scopus, ScienceDirect, ProQuest Central, CINAHL, LILACS, and OTseeker were searched up to July 31, 2017. Two reviewers independently assessed study eligibility. Randomized or quasi-randomized controlled trials on PTHP administered by parents, other family members, friends, or informal caregivers to children who had or who were at risk for motor delay were included. Two reviewers independently appraised trial quality on the PEDro scale and extracted data. Twenty-four articles representing 17 individual trials were identified. Populations and interventions investigated were heterogeneous. Most of the trials had important research design limitations and methodological issues that could limit usefulness in ascertaining the effectiveness of caregiver-provided PTHP. Few (4 of 17) trials indicated involvement of caregivers in the PTHP planning, assessed how the caregivers learned from the training or instructions provided, or carried out both. Included studies were heterogeneous, and unpublished data were excluded. Although caregiver-provided PTHP are important in addressing motor outcomes in this population, there is a lack of evidence at the level of clinical trials to guide practice. More research is urgently needed to determine the effectiveness of care-giver-provided PTHP. Future studies should address the many important issues identified in this scoping review to improve the usefulness of the trial results.

Affecting others: social appraisal and emotion contagion in everyday decision making.

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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.

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

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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.

Psychosocial impact of early onset dementia among caregivers.

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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.

Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap.

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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.

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.

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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.

Factors associated with caregiver burden among pharmacotherapy-treated children/adolescents with ADHD in the Caregiver Perspective on Pediatric ADHD survey in Europe

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Fridman M

2017-02-01

Full Text Available Moshe Fridman,1 Tobias Banaschewski,2 Vanja Sikirica,3 Javier Quintero,4 M Haim Erder,3 Kristina S Chen5 1AMF Consulting, Inc., Los Angeles, CA, USA; 2Department of Child and Adolescent Psychiatry and Psychotherapy, Central Institute of Mental Health, Medical Faculty Mannheim of the University of Heidelberg, Mannheim, Germany; 3Global Health Economics Outcomes Research and Epidemiology, Shire, Wayne, PA, USA; 4Psychiatry Department, Hospital Universitario Infanta Leonor, Complutense University, Madrid, Spain; 5Global Health Economics Outcomes Research and Epidemiology, Shire, Lexington, MA, USA Background: Burden on caregivers of children/adolescents with attention-deficit/hyperactivity disorder (ADHD is multidimensional, but incompletely understood. Objective: To analyze caregiver burden across the concepts of work, social/family life, and parental worry/stress, in relation to selected contributing factors. Methods: The online Caregiver Perspective on Pediatric ADHD survey was fielded in ten European countries. Analysis included children/adolescents (6–17 years who were receiving/had received ADHD pharmacotherapy in the previous 6 months. Caregivers recorded their child’s/adolescent’s symptoms “on”/“off” medication (ie, when the caregiver reported that the child/adolescent forgot/chose not to take medication, before the onset of medication effect, or medication worn off. Effects of ADHD severity, comorbidities, and medication adherence on each burden outcome were assessed (multiple regression models. Results: In total, 2,326 caregivers were included (children/adolescents’ mean age: 11.5 years, 80% male. Caregivers reported missed/altered work, avoiding social activity, increased parental worry/stress, and strain on family life, despite using ADHD pharmacotherapy. Child/adolescent comorbidities and ADHD severity were significantly related to all burden concepts measured; the strongest comorbidity associations were with altered

Exploring the influence of Internet-based caregiver support on experiences of isolation for older spouse caregivers in rural areas: a qualitative interview study.

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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.

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

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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

Health Care Seeking Behavior among Caregivers of Sick Children Who Had Cerebral Malaria in Northwestern Nigeria

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Edwin E. Eseigbe

2012-01-01

Full Text Available Cerebral malaria is a significant cause of childhood morbidity in our region. The challenges of effective management include time and quality of treatment. The study appraised the health care seeking behavior of caregivers of sick children who developed cerebral malaria, in Zaria, northwestern Nigeria. Caregivers indentified were parents 29 (87.9% and grandparents 4 (12.1%. Most of them were in the upper social classes. Health care options utilized before presentation at our facility were formal health facility 24 (72.7%, patent medicine seller 12 (36.4%, home treatment 10 (30.3%, and herbal concoction 6 (18.2% with majority 24 (72.7% using more than one option. Antimalarial therapy was instituted in 25 (75.6% of the cases. Mortality was significantly associated with the use of herbal concoction, treatment at a formal health facility and patent medicine seller, multiple convulsions, age less than 5 years, and noninstitution of antimalarial therapy before presentation. The study showed use of inappropriate health care options by caregivers and highlighted the need to pursue an awareness drive among caregivers on the use of health care options.

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

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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.

Neuropsychiatric Symptoms in Parkinson’s Disease Dementia Are Associated with Increased Caregiver Burden

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Yoon-Sang Oh

2015-01-01

Full Text Available Objective Neuropsychiatric symptoms are common in Parkinson’s disease dementia (PDD. Frequent and severe neuropsychiatric symptoms create high levels of distress for patients and caregivers, decreasing their quality of life. The aim of this study was to investigate neuropsychiatric symptoms that may contribute to increased caregiver burden in PDD patients. Methods Forty-eight PDD patients were assessed using the 12-item Neuropsychiatric Inventory (NPI to determine the frequency and severity of mental and behavioral problems. The Burden Interview and Caregiver Burden Inventory were used to evaluate caregiver burden. Results All but one patient showed one or more neuropsychiatric symptoms. The three most frequent neuropsychiatric symptoms were apathy (70.8% and anxiety (70.8%, followed by depression (68.7%. More severe neuropsychiatric symptoms were significantly correlated with increased caregiver burden. The domains of delusion, hallucination, agitation and aggression, anxiety, irritability and lability, and aberrant motor behavior were associated with caregiver stress. After controlling for age and other potential confounding variables, total NPI score was significantly associated with caregiver burden. Conclusions The results of this study confirm that neuropsychiatric symptoms are frequent and severe in patients with PDD and are associated with increased caregiver distress. A detailed evaluation and management of neuropsychiatric symptoms in PDD patients appears necessary to improve patient quality of life and reduce caregiver burden.

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

Mindfulness as a Protective Factor for the Burden of Caregivers of Amyotrophic Lateral Sclerosis Patients.

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Pagnini, Francesco; Phillips, Deborah; Bosma, Colin M; Reece, Andrew; Langer, Ellen

2016-01-01

Caregivers of people with severe chronic conditions, such as amyotrophic lateral sclerosis (ALS), are at risk of developing depression and anxiety and reduced quality of life. Few studies have explored protective factors in this population and none investigated the role of mindfulness. The study aimed to examine the relationship between mindfulness and health-related outcomes in a population of ALS caregivers. We conducted an online survey with ALS caregivers, and again at 4-month follow-up, to assess mindfulness, burden, quality of life, anxiety, and depression. The associations between mindfulness and the other outcomes were evaluated both cross-sectionally and longitudinally. Mindfulness correlated negatively with burden, depression, and anxiety and positively with quality of life, maintaining stability through time. Our results showed that mindfulness is positively related to quality of life and negatively related to level of burden. We suggest that this construct can represent a preventative factor toward the negative effects of caregiving. © 2015 Wiley Periodicals, Inc.

[Rumination and cognitive fusion in dementia family caregivers].

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Romero-Moreno, Rosa; Márquez-González, María; Losada, Andrés; Fernández-Fernández, Virginia; Nogales-González, Celia

2015-01-01

Rumination has been described as a dysfunctional coping strategy related to emotional distress. Recently, it has been highlighted from the Acceptance and Commitment Therapy therapeutic approach, the negative role that cognitive fusion (the extent to which we are psychologically tangled with and dominated by the form or content of our thoughts) has on the explanation of distress. The aim of this study is to simultaneously analyze the role of rumination and cognitive fusion in the caregiving stress process. The sample of 176 dementia caregivers was divided in four groups, taking into account their levels of rumination and cognitive fusion: HRHF=high rumination+high cognitive fusion; HRLF=high rumination+low cognitive fusion; LRHF= low rumination+high cognitive fusion; and LRLC=low rumination and low cognitive fusion. Caregiver stress factors, frequency of pleasant events, experiential avoidance, coherence and satisfaction with personal values, depression, anxiety and satisfaction with life, were measured. The HRHF group showed higher levels of depression, anxiety, experiential avoidance and lower levels of satisfaction with life, frequency of pleasant events, coherence and satisfaction with personal values, than the other three groups. Considering simultaneously rumination and cognitive fusion may contribute to a better understanding of caregiver coping and distress. Copyright © 2014 SEGG. Published by Elsevier Espana. All rights reserved.

Psychosocial impact of early onset dementia among caregivers

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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.

Self-transcendence and family caregivers of adults with dementia.

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Acton, G J; Wright, K B

2000-06-01

Research has documented that caring for a family member with dementia is stressful and burdensome. However, difficult life experiences such as fear, loss, and grief may help persons move beyond a concern for self toward a larger perspective and concern for others. Both positive and negative experiences can promote positive movement toward growth and development. This movement has been described as self-transcendence, or the ability to look beyond the self and present difficulties, to extend concern to others, and to find personal meaning and wholeness in the context of life-changing events. The family caregiving experience with its inherent difficulties might provide the impetus for such a movement toward self-transcendence. The purpose of this article is to examine the concept of self-transcendence, explore its linkages to the caregiving experience, and suggest potential strategies to assist family caregivers to achieve self-transcendence.

Predictors of Secondary Role Strains Among Spousal Caregivers of Older Adults With Functional Disability.

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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.

Are there individual and sibling differences in appraisals of interparental conflict?

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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).

PA2 Satisfaction with information received: perceptions of the patient and the informal caregiver.

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Dawber, R; Armour, K; Carter, C; Ferry, P; Meystre, C

2015-04-01

Provision of information to patients and families is a priority of palliative care. Lack of information on symptoms, treatment and disease progress adversely affects patients' and caregivers' abilities to self manage and participate in decision making and care. Qualitative reports of end of life care suggest caregivers seek more information than patients. Ignorance of this need may hamper health promotion strategies and limitation of patient and caregiver morbidity during end of life and bereavement processes. To compare satisfaction of dying patients with information given; to proxy satisfaction estimates on the patient's behalf. Prospective study comparing assessment of satisfaction with information received by nurse, informal caregiver and dying patient (>64 years) in hospital. Assessments made within 24 h, using patient and caregiver versions of the palliative outcome scale (POS). weighted kappa for agreement between proxy and patient. Informal caregivers overestimate dissatisfaction with level of information given compared to patients. Weighted kappa patient versus ICG 0.187 (slight agreement), n = 50. The disparity between patient and proxy information satisfaction reflects the complexity of participatory strategies to limit morbidity at the end of life. Proxy over- estimation of patient dissatisfaction with information received may reflect the caregivers own dissatisfaction. As death approaches, caregivers require more information than patients, their burden increases and they become the interpreter of patient symptoms. Ignorance may lead to overestimation of symptoms, early breakdown of social care, and unplanned admission, risking death other than in the patients preferred place. Meeting caregiver information needs may reduce caregiver burden and improve proxy assessments, reducing patient and caregiver morbidity. © 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.

When LVAD Patients Die: The Caregiver's Mourning.

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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.

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...

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.

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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

Controlled rehabilitative and supportive care intervention trials in patients with high-grade gliomas and their caregivers

DEFF Research Database (Denmark)

Piil, K; Juhler, M; Jakobsen, J

2016-01-01

and Embase were searched for literature published from 1995 to May 2013. Data from eight studies were reviewed for substantive methods and results. Methodological quality was described and assessed using the scoring system for appraising mixed methods research and concomitantly appraising qualitative......, quantitative and mixed methods primary studies in mixed study reviews. RESULTS: The search yielded 914 unique publications, of which 9 were classified eligible for this review. There is preliminary evidence that cognitive group therapy improves memory skills in patients with high-grade gliomas, early physical....... CONCLUSIONS: As evidence is beginning to emerge, there is a need for well-designed longitudinal and randomised controlled trials of non-pharmacological interventions in high-grade glioma patients and their caregivers in order to develop clinical guidelines for supportive and rehabilitative approaches...

Longitudinal Associations Among Pain, Posttraumatic Stress Disorder Symptoms, and Stress Appraisals.

Science.gov (United States)

Vaughan, Christine A; Miles, Jeremy N V; Eisenman, David P; Meredith, Lisa S

2016-04-01

Comorbidity of posttraumatic stress disorder (PTSD) and pain is well documented, but the mechanisms underlying their comorbidity are not well understood. Cross-lagged regression models were estimated with 3 waves of longitudinal data to examine the reciprocal associations between PTSD symptom severity, as measured by the Clinician-Administered PTSD Scale (CAPS), and pain, as measured by a brief self-report measure of pain called the PEG (pain intensity [P], interference with enjoyment of life [E], and interference with general activity [G]). We evaluated stress appraisals as a mediator of these associations in a sample of low-income, underserved patients with PTSD (N = 355) at federally qualified health centers in a northeastern metropolitan area. Increases in PTSD symptom severity between baseline and 6-month and 6- and 12-month assessments were independently predicted by higher levels of pain (β = .14 for both lags) and appraisals of life stress as uncontrollable (β = .15 for both lags). Stress appraisals, however, did not mediate these associations, and PTSD symptom severity did not predict change in pain. Thus, the results did not support the role of stress appraisals as a mechanism underlying the associations between pain and PTSD. Copyright © 2016 International Society for Traumatic Stress Studies.

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.

Promoting improved family caregiver health literacy: evaluation of caregiver communication resources.

Science.gov (United States)

Wittenberg, Elaine; Goldsmith, Joy; Ferrell, Betty; Ragan, Sandra L

2017-07-01

Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for Caregivers TM . Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for Caregivers TM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for Caregivers TM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

The education of family caregivers as an ethical issue.

Science.gov (United States)

Pennacchini, M; Tartaglini, D

2014-01-01

Family caregiving represents the first and predominant source of care for 75% to 80% of people with chronic illness in industrialized countries. They have a fundamental role in assisting, providing care, and support to their relatives throughout all the history of the illness. Despite the significant value of informal caregiving, studies consistently report unmet needs among informal caregivers, particularly with regard to obtaining the information and education necessary to care for an older adult experiencing a chronic health condition. Health care professionals talk to patients and their relatives about their disease and about how to manage them daily, forgetting to consider the healthy component that still accompanies their disease though to differing degrees. In the twentieth century some philosophers highlighted that health is still very frequently a hidden asset, an asset that human beings forget not only to possess, but mostly to guard. This paper argues that the family can be an entity responsible not only for the treatment and care of a sick person, but also to building the health of this and the other members Family caregivers can build families capable of "building health" even when caring for a chronically ill. Therefore the education of family caregivers is an important ethical issue. Health care providers should be supportive of family caregivers and help them acquire knowledge and skills in order to maximize quality care. In addition, it is very important that family caregivers: 1. acquire the ability to direct the family's attitude to the enhancement of the health of a sick person, 2. lead the family and not just the sick person to have an adequate and proper life style in order to manage both his/her pathology and his/her health; 3. contribute to improve the quality of life both of the patient and of the family considered as a "unit of care"

How Does Culture Shape Roles and Relationships in Taiwanese Family Caregiving for an Adolescent With Cancer?

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Yeh, Li-Chyun; Kellet, Ursula; Henderson, Saras; Chen, Kang-Hua

2015-01-01

Chinese culture plays a significant part in how Taiwanese families view life events. Caregivers envisage themselves as guardians of their children in all facets of family life, including wellness and strive to maintain harmonious relationships within the family. However, it remains unclear what impact caring for an adolescent with cancer has on family roles and relationships in Taiwanese families, nor are the processes for managing change in family roles and relationships associated with caregiving well understood. This study explores the impact of caregiving for an adolescent with cancer on the roles and relationships within Taiwanese families. Seven families were recruited from a medical hospital in Taiwan. Data were collected through qualitative interviews and analyzed following Strauss and Corbin's grounded theory. The core category, underpinned by Chinese culture, proved to be experiencing the broken chain of family life. This was the central issue brought about by 4 consequences for the broken chain of family life. The expression "the broken chain of family life" encapsulates how important Chinese cultural values are in defining caregiver task performance. The findings have implications for Taiwanese families in perceiving, adjusting to, and fulfilling the altered roles and relationships associated with caring for an adolescent with cancer at home. The delivery of exceptional care and services depends on gaining insight into how caregiving influences family roles and relationships. How families failed to manage the process of caregiving provides valuable insight for informing and providing recommendations for services and support.

The Stress of Sadness: The Most Stressful Symptoms for Hospice Family Caregivers.

Science.gov (United States)

Ratkowski, Kristy L; Washington, Karla T; Craig, Kevin W; Albright, David L

2015-11-01

A family member or friend is often a hospice patient's primary caregiver and, as such, may face a significant number of stressors, including challenges related to managing patient symptoms. This study investigated the most stressful patient symptoms as reported by 111 hospice family caregivers of cancer (n=66) and cardiopulmonary (n=45) patients. Researchers calculated the mean level of stress caregivers attributed to 32 different patient symptoms commonly encountered at end of life. They found the symptoms perceived as most stressful for caregivers were psychological in nature. Study findings suggest that members of the hospice interdisciplinary team should connect patients and their caregivers to various types of support to address psychological symptoms, benefitting patients and caregivers alike. © The Author(s) 2014.

Preferences of Knowledge Users for Two Formats of Summarizing Results from Systematic Reviews: Infographics and Critical Appraisals.

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Crick, Katelynn; Hartling, Lisa

2015-01-01

To examine and compare preferences of knowledge users for two different formats of summarizing results from systematic reviews: infographics and critical appraisals. Cross-sectional. Annual members' meeting of a Network of Centres of Excellence in Knowledge Mobilization called TREKK (Translating Emergency Knowledge for Kids). TREKK is a national network of researchers, clinicians, health consumers, and relevant organizations with the goal of mobilizing knowledge to improve emergency care for children. Members of the TREKK Network attending the annual meeting in October 2013. Overall preference for infographic vs. critical appraisal format. Members' rating of each format on a 10-point Likert scale for clarity, comprehensibility, and aesthetic appeal. Members' impressions of the appropriateness of the two formats for their professional role and for other audiences. Among 64 attendees, 58 members provided feedback (91%). Overall, their preferred format was divided with 24/47 (51%) preferring the infographic to the critical appraisal. Preference varied by professional role, with 15/22 (68%) of physicians preferring the critical appraisal and 8/12 (67%) of nurses preferring the infographic. The critical appraisal was rated higher for clarity (mean 7.8 vs. 7.0; p = 0.03), while the infographic was rated higher for aesthetic appeal (mean 7.2 vs. 5.0; pinfographic; p = 0.09). Respondents indicated the infographic would be most useful for patients and their caregivers, while the critical appraisal would be most useful for their professional roles. Infographics are considered more aesthetically appealing for summarizing evidence; however, critical appraisal formats are considered clearer and more comprehensible. Our findings show differences in terms of audience-specific preferences for presentation of research results. This study supports other research indicating that tools for knowledge dissemination and translation need to be targeted to specific end users' preferences

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke.

Science.gov (United States)

Kamel, Andaleeb Abu; Bond, A Elaine; Froelicher, Erika Sivarajan

2012-04-01

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended. © 2012 Blackwell Publishing Asia Pty Ltd.

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).

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

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.

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.

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

Burden, resilience and coping in caregivers of patients with interstitial lung disease.

Science.gov (United States)

Shah, R J; Collard, H R; Morisset, J

Prior work has described the experience of caregiving in idiopathic pulmonary fibrosis, but the effect on caregivers in interstitial lung disease (ILD) has not been explored. Describe the burden, resilience, and health related quality of life (HRQoL) of caregivers of people with ILD. In a mixed methods study, ILD caregivers completed questionnaires and participated in focus groups. A qualitative thematic analysis of the focus group transcripts was conducted. Thirty seven caregivers completed the survey, and 15 participated in the focus groups. 65% were female; the average age was 66 (SD = 13). The mean Short Form-36 role emotional and mental health scores were 18 (SD = 4) and 46 (SD = 7). The focus groups identified 4 major themes: emotional burden, changes in relationship, coping strategies, and unmet needs of caregivers. Caregiving for patients with ILD significantly impairs HRQoL, particularly, emotional health. Increasing resources could improve the caregiving experience in ILD. Copyright © 2018 Elsevier Inc. All rights reserved.

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...

Caregiving, perceptions of maternal favoritism, and tension among siblings.

Science.gov (United States)

Suitor, J Jill; Gilligan, Megan; Johnson, Kaitlin; Pillemer, Karl

2014-08-01

Studies of later-life families have revealed that sibling tension often increases in response to parents' need for care. Both theory and research on within-family differences suggest that when parents' health declines, sibling relations may be affected by which children assume care and whether siblings perceive that the parent favors some offspring over others. In the present study, we explore the ways in which these factors shape sibling tension both independently and in combination during caregiving. In this article, we use data collected from 450 adult children nested within 214 later-life families in which the offspring reported that their mothers needed care within 2 years prior to the interview. Multilevel analyses demonstrated that providing care and perceiving favoritism regarding future caregiving were associated with sibling tension following mothers' major health events. Further, the effects of caregiving on sibling tension were greater when perceptions of favoritism were also present. These findings shed new light on the conditions under which adult children are likely to experience high levels of sibling tension during caregiving. Understanding these processes is important because siblings are typically the individuals to whom caregivers are most likely to turn for support when assuming care of older parents, yet these relationships are often a major source of interpersonal stress. © The Author 2013. 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.

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...

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.

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

Predictor of increase in caregiver burden for disabled elderly at home.

Science.gov (United States)

Okamoto, Kazushi; Harasawa, Yuko

2009-01-01

In order to classify the caregivers at high risk of increase in their burden early, linear discriminant analysis was performed to obtain an effective discriminant model for differentiation of the presence or absence of increase in caregiver burden. The data obtained by self-administered questionnaire from 193 caregivers of frail elderly from January to February of 2005 were used. The discriminant analysis yielded a statistically significant function explaining 35.0% (Rc=0.59; d.f.=6; p=0.0001). The configuration indicated that the psychological predictors of change in caregiver burden with much perceived stress (1.47), high caregiver burden at baseline (1.28), emotional control (0.75), effort to achieve (-0.28), symptomatic depression (0.20) and "ikigai" (purpose in life) (0.18) made statistically significant contributions to the differentiation between no increase and increase in caregiver burden. The discriminant function showed a sensitivity of 86% and specificity of 81%, and successfully classified 83% of the caregivers. The function at baseline is a simple and useful method for screening of an increase in caregiver burden among caregivers for the frail elderly at home.

Level of understanding of Alzheimer disease among caregivers and the general population.

Science.gov (United States)

Jorge, C; Cetó, M; Arias, A; Blasco, E; Gil, M P; López, R; Dakterzada, F; Purroy, F; Piñol-Ripoll, G

2018-05-11

Understanding of Alzheimer disease is fundamental for early diagnosis and to reduce caregiver burden. The objective of this study is to evaluate the degree of understanding of Alzheimer disease among informal caregivers and different segments of the general population through the Alzheimer's Disease Knowledge Scale. We assessed the knowledge of caregivers in different follow-up periods (less than one year, between 1 and 5 years, and over 5 years since diagnosis) and individuals from the general population. Alzheimer's Disease Knowledge Scale scores were grouped into different items: life impact, risk factors, symptoms, diagnosis, treatment, disease progression, and caregiving. A total of 419 people (215 caregivers and 204 individuals from the general population) were included in the study. No significant differences were found between groups for overall Alzheimer's Disease Knowledge Scale score (19.1 vs. 18.8, P = .9). There is a scarce knowledge of disease risk factors (49.3%) or the care needed (51.2%), while symptoms (78.6%) and course of the disease (77.2%) were the best understood aspects. Older caregiver age was correlated with worse Alzheimer's Disease Knowledge Scale scores overall and for life impact, symptoms, treatment, and disease progression (P < .05). Time since diagnosis improved caregivers' knowledge of Alzheimer disease symptoms (P = .00) and diagnosis (P = .05). Assessing the degree of understanding of Alzheimer disease is essential to the development of health education strategies both in the general population and among caregivers. Copyright © 2018 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.