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... the caregiver needs it. Education and Information Coping Skills Counseling Family Meetings Home Care Help Hospice Care for the Cancer Patient Caregivers have a very hard job and it's normal to need help. Although ...
Durán, Lucas G; Scherñuk Schroh, Jordán C; Panizoni, Estefanía P; Jouglard, Ezequiel F; Serralunga, M Gabriela; Esandi, M Eugenia
Bullying at school is usually kept secret from adults, making them unaware of the situation. To describe caregivers' and children's perception and assess their agreement in terms of bullying situations. Cross-sectional study in children aged 8-12 years old attending public schools and their caregivers. The questionnaire on preconceptions of intimidation and bullying among peers (PRECONCIMEI) (child/caregiver version) was used. Studied outcome measures: Scale of bullying, causes of bullying, child involvement in bullying, communication in bullying situations. Univariate and bivariate analyses were done and agreement was estimated using the Kappa index. A total of 529 child/caregiver dyads participated. Among caregivers, 35% stated that bullying occurred in their children's schools. Among children, 133 (25%) admitted to being involved: 70 (13%) were victims of bullying, 40 (8%) were bullies, and 23 (4%) were bullied and perpetrated bullying. Among the 63 caregivers of children who admitted to be bullies, 78% did not consider their children capable of perpetrating bullying. Among children who were bullied or who both suffered bullying and bullied others, 69.9% (65/93) indicated that "if they were the victims of bullying, they would tell their family." However, 89.2% (83/93) of caregivers considered that their children would tell them if they were ever involved in these situations. Agreement was observed in terms of a positive communication (Kappa = -0.04) between 62.6% (57/91) of the child/caregiver dyads school bullying. Disagreement was observed between children and their caregivers in relation to the frequency and communication of bullying situations. Few caregivers whose children admitted to being involved in these situations believed it was a possibility. Sociedad Argentina de Pediatría
Jones, Jennifer M; McPherson, Christine J; Zimmermann, Camilla; Rodin, Gary; Le, Lisa W; Cohen, S Robin
Proxy ratings, if valid, may provide an alternative approach to evaluating patient quality of life (QoL) at the end of life. To examine agreement between terminally ill cancer patients' self-reported QoL and proxy assessment of patient QoL by their family caregiver (FCG) and palliative care physicians (PCPs) at two time points. Patients admitted to an acute palliative care unit and their FCGs and PCPs completed the McGill Quality of Life Questionnaire (MQOL) at Days 3 and 6 after admission. Response bias and response precision were examined at the individual and group levels. Furthermore, we examined patient factors affecting agreement and responsiveness of proxy MQOL scores to changes in patients' QoL between Days 3 and 6. Statistically and clinically significant mean differences were detected between the patient and both proxy groups' reports of QoL on Day 3, with the magnitude of the differences decreasing somewhat by Day 6. Proxies underestimated patients' QoL compared with patients' self-report. Response precision based on intraclass correlation values and proportion of approximate agreement was poor to fair at both time points. Agreement was better for patients with greater physical burden and more cognitive difficulties. Proxies' responsiveness to change from Day 3 to Day 6 was low, and proxies were not able to detect minimally important changes in QoL. The findings suggest that moderate agreement between patient and proxy ratings of QoL develops over time but that precision at the individual level, which is more clinically relevant, is less reliable. New strategies for improving proxy reliability are needed. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Daire, Andrew P.; Torres, Jennifer; Edwards, Nivischi N.
The authors describe how 3 groups of family caregivers (spouses, daughters, and sons) are affected by the caregiving role. In addition, clinical considerations and interventions for mental health professionals working with these different groups of family caregivers are discussed. A clinical case example is also presented. (Contains 2 tables.)
Etkin, Caryn D; Prohaska, Thomas R; Connell, Cathleen M; Edelman, Perry; Hughes, Susan L
We examined exercise behaviors among family caregivers and the degree to which aspects of the caregiving role influenced exercise behaviors. Understanding factors associated with caregiver physical activity provides practitioners the means to design and tailor interventions to be effective for caregivers. Caregivers (N=208) participating in a self-care intervention to promote caregiving skills were surveyed at baseline, prior to training. Measures included caregiver characteristics, care recipient characteristics, attitudes and intentions toward exercise and levels of physical activity. Mental health variables and self-efficacy for exercise were significantly related to exercise levels in bivariate analyses. Regression analyses revealed that caregiver and care recipient characteristics accounted for a small percentage of the variance in exercise behavior. Caregiver vitality and self-efficacy for exercise were key variables most significantly related to exercise behaviors. Findings suggest that mental health factors and attitudes about exercise may be more important predictors of exercise than caregiving factors.
Liu, Hsin-Yi; Huang, Lian-Hua
The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.
Hsiao, Chiu-Yueh; Tsai, Yun-Fang
To assess the degree of caregiver burden and family functioning among Taiwanese primary family caregivers of people with schizophrenia and to test its association with demographic characteristics, family demands, sense of coherence and family hardiness. Family caregiving is a great concern in mental illness. Yet, the correlates of caregiver burden and family functioning in primary family caregivers of individuals with schizophrenia still remain unclear. A cross-sectional descriptive study. A convenience sample of 137 primary family caregivers was recruited from two psychiatric outpatient clinics in Taiwan. Measures included a demographic information sheet and the Chinese versions of the Family Stressors Index, Family Strains Index, 13-item Sense of Coherence Scale, 18-item Caregiver Burden Scale, Family Hardiness Index and Family Adaptability, Partnership, Growth, Affection, and Resolve Index. Data analysis included descriptive statistics, Pearson's product-moment correlation coefficients, t-test, one-way analysis of variance and a stepwise multiple linear regression. Female caregivers, additional dependent relatives, increased family demands and decreased sense of coherence significantly increased caregiver burden, whereas siblings as caregivers reported lower degrees of burden than parental caregivers. Family caregivers with lower family demands, increased family hardiness and higher educational level had significantly enhanced family functioning. Sense of coherence was significantly correlated with family hardiness. Our findings highlighted the importance of sense of coherence and family hardiness in individual and family adaptation. Special attention needs to focus on therapeutic interventions that enhance sense of coherence and family hardiness, thereby improving the perception of burden of care and family functioning. Given the nature of family caregiving in schizophrenia, understanding of correlates of caregiver burden and family functioning would help
Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael
Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…
Rankin, Eric D.; And Others
Evaluated development of integrated family assessment inventory based on Double ABCX and Circumplex models of family functioning and its clinical utility with 121 primary family caregivers from cognitive disorders program. Proposed model predicted significant proportion of variance associated with caregiver stress and strain. Several aspects of…
Talkington-Boyer, Shannon; Snyder, Douglas K.
Examined impact of caregiving among 110 caregivers to aging family member with Alzheimer's disease. Family caregivers' appraisals along dimensions of subjective burden, negative impact, caregiving satisfaction, and caregiver mastery were correlated with extent of memory and behavior problems of patient and caregivers' coping style, locus of…
Brodaty, Henry; Donkin, Marika
Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated. PMID:19585957
The purpose of this study was to assess gender effects on family demands, social support and caregiver burden as well as to examine contributing factors of caregiver burden in caring for family members with mental illness. Providing continued care and support for people with mental illness is demanding and challenging. Findings of earlier caregiving studies on the role of caregiver gender in response to caregiver burden and caregiving-related factors have been inconsistent. Little research has been undertaken to examine gender effect on family demands, social support and caregiver burden in Taiwanese family caregivers of individuals with mental illness. Cross-sectional, descriptive correlation design. Data from 43 families, including at least one male and female family caregiver in each family, were analysed using descriptive statistics, principal component analysis and mixed linear modelling. Demographic data, Perceived Stress Scale, Perceived Social Support and Caregiver Burden Scale-Brief were used to collect data. Female family caregivers perceived less social support and experienced higher degrees of caregiver burden compared with male family caregivers. In contrast, no significant gender effect was associated with family demands. Family caregivers with greater family demands and less social support experienced higher degrees of caregiver burden. The results reinforced those of previously published studies that caregiver burden is highly prevalent among female family caregivers. Caregiver gender appears to be highly valuable for explaining family demands, social support and caregiver burden. Health care professionals should continue to collaborate with family caregivers to assess potential gender effects on available support and design gender-specific interventions to alleviate caregiver burden. © 2010 Blackwell Publishing Ltd.
Lohne, Vibeke; Høy, Bente; Wilhelm Rehnsfeldt, Arne
This qualitative study is focusing on dignity in nursing homes from the perspective of family caregivers. Dignity is a complex concept and central to nursing. Dignity in nursing homes is a challenge, according to research. Family caregivers are frequently involved in their family members’ daily...... experiences at the nursing home. This Scandinavian application study has a descriptive and explorative design. Twenty-nine family caregivers were included. A phenomenological-hermeneutic approach was used to understand the meaning of the narrated text. The interpretations revealed two main themes: “One should......, but still important in nursing homes. It seems therefore important to further investigate experiences of family caregivers in the context of nursing homes....
Wolff, Jennifer L; Darer, Jonathan D; Larsen, Kevin L
Health information technology has been embraced as a strategy to facilitate patients' access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients' desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.
Goossens, P.J.J.; Wijngaarden, B. van; Knoppert-van der Klein, E.A.M.; Achterberg, T. van
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'
Full Text Available This integrative review was conducted to describe findings from Thai studies concerning family caregivers for cancer patients. Twenty-three studies that were published from 1994 to 2009 were considered. There were 15 quantitative studies and 8 qualitative studies. The stress and coping model developed by Lazarus and Folkman was the most popular theory that was used to guide the studies. The variables that were explored in the quantitative studies consisted of social support, stress, coping, caregiver burden, quality of life (QOL, and others. The qualitative findings revealed that there were several themes such as the following: the meaning of being family caregivers for cancer patients, the meaning of care, the experiences of caregivers, and the problems and needs of family caregivers in the Thai context. The evidence from the 23 studies reviewed showed that the state of knowledge of cancer caregivers in the Thai context is at an early stage compared with the state of knowledge in Western countries. More research needs to be done to explore the concepts related to negative and positive outcomes of caregiving.
Kataoka-Yahiro, Merle; Ceria, Clementina; Caulfield, Rick
The grandparenting caregiving role in ethnically diverse families has not been well defined and described in the present literature. The goals of this article are to (a) synthesize what is known about the grandparent caregiving role in ethnically diverse families in the context of the African-American, Hispanic, and Asian-American families and (b) identify gaps in knowledge to guide future research, education, and practice in this area of study. A narrative approach was used to review the literature from 1980 to 2003 and a descriptive summary of the literature is provided with a discussion of the research methods and salient findings.
Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca
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
Samson, Zoe Blake; Parker, Monica; Dye, Clinton; Hepburn, Kenneth
Dementia family caregivers display significant rates of psychological and physical symptoms. African Americans (AAs) are disproportionately affected by dementia. African American caregivers display unique patterns of symptomology and responses to interventions designed to promote caregiver well-being. This study analyzed qualitative focus group data from 32 AA caregivers to explore how issues of race and culture may be incorporated into a culturally sensitive intervention for AA dementia family caregivers. Caregivers were asked scripted questions about their caregiving experiences and to suggest alterations to an existing psychoeducation program. Analysis revealed 4 key themes: the tradition of family care, caregiving and caregiving issues, culturally appropriate care, and navigating without a map. Suggestions for an educational program included a focus on developing caregiver skills and knowledge for caregiving, promotion of self-care, and reflection on the AA family and community as resources for care. © The Author(s) 2016.
This podcast discusses role of family caregivers and the importance of protecting their health. It is primarily targeted to public health and aging services professionals. Created: 12/23/2009 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 12/23/2009.
Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang
To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.
Erlingsson, Christen L; Magnusson, Lennart; Hanson, Elizabeth
Our aim was to investigate connections between Swedish family caregivers' health and providing care for an ill relative by conducting a systematic search and synthesis of previous research. We analyzed 31 articles using first qualitative content analysis then hermeneutic analysis. Analysis resulted in three derived themes-sliding sideways into caregiving, caregiving in reciprocity, and caregiving in disintegration-and a main interpretation and conceptual model of Swedish family caregivers' health-caregiving in a sphere of beliefs. Results indicated that Swedish family caregivers' beliefs, experiences of reciprocity, or nonsupport, together with quality of interpersonal relationships and feelings of responsibility and guilt, have a profound impact on their health. These results point to the value and importance of nurses gaining an understanding of family caregivers' beliefs and experiences of reciprocity or nonsupport to effectively promote family caregivers' health.
Semple, Shirley J.
Examined 3 conceptually distinct dimensions of family conflict in relation to depression and anger among 555 caregivers of Alzheimer patients. Found that conflicts involving family members' attitudes and actions toward caregiver were associated with increased risk for depression among caregivers, whereas conflicts stemming from family members'…
Family caregivers provide the vast majority of care for people with cancer. The Family Caregiver Project at the City of Hope Cancer Center is an educational program intended to provide health professionals with the tools and information needed to help family caregivers care for themselves and their loved ones with cancer.
Ge, Lixia; Mordiffi, Siti Zubaidah
Caring for elderly cancer patients may cause multidimensional burden on family caregivers. Recognition of factors associated with caregiver burden is important for providing proactive support to caregivers at risk. The aim of this study was to identify factors associated with high caregiver burden among family caregivers of elderly cancer patients. A systematic search of 7 electronic databases was conducted from database inception to October 2014. The identified studies were screened, and full text was further assessed. The quality of included studies was assessed using a checklist, and relevant data were extracted using a predeveloped data extraction form. Best-evidence synthesis model was used for data synthesis. The search yielded a total of 3339 studies, and 7 studies involving 1233 family caregivers were included after screening and full assessment of 116 studies. Moderate evidence supported that younger caregivers, solid tumors, and assistance with patient's activities of daily living were significantly associated with high caregiver burden. Eighteen factors were supported by limited evidence, and 1 was a conflicting factor. The scientific literature to date proved that caregiver burden was commonly experienced by family caregivers of elderly cancer patients. The evidence indicated that family caregivers who were at younger age, caring for solid tumor patients, and providing assistance with patient's activities of daily living reported high caregiver burden. The data provide evidence in identifying family caregivers at high risk of high caregiver burden. More high-quality studies are needed to clarify and determine the estimates of the effects of individual factors.
Chang, Tzu-Chung; Shyu, Yea-Ing Lotus; Chen, Min-Chi; Chiu, Yi-Chen; Huang, Huei-Ling
Differences in dementia symptoms at different dementia stages increase the burden of caregiving. The inability of family caregivers to meet patient needs not only influences the health of the patient, but also impacts negatively on their personal physical and mental health. This study explores predictors of competence in family caregivers of dementia patients. We designed a cross-sectional study to examine 123 participant groups. Each group included one individual diagnosed with dementia and one family caregiver. Predictors of caregiver competence included few / no caregiver chronic diseases, relatively high level of caregiver education, and lack of comorbidities in the care recipient. These predictors explained 26.7% of total variance. We recommend that nurses evaluate caregivers' care competency in order to provide appropriate health information and assistance. Guidance provided should take into consideration the caregivers' educational background. Apart from providing information related to dementia behavior, nurses should also provide caregiver guidance information related to the effects of comorbidities on dementia, as appropriate.
Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong
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.
Caregivers provide help to another person in need. The person receiving care may be an adult - often ... or a child with special medical needs. Some caregivers are family members. Others are paid. They do ...
Nichols, Linda O.; Martindale-Adams, Jennifer; Burns, Robert; Graney, Marshall J.; Zuber, Jeffrey
This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1,476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II)…
Chen, Ya-Mei; Hedrick, Susan C.; Young, Heather M.
The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative…
Goldsmith, Joy; Wittenberg, Elaine; Platt, Christine Small; Iannarino, Nicholas T; Reno, Jenna
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.
Maiden, Robert J.; And Others
Caring for a family member with dementia is a major source of stress for the caregiver. To assess the impact of caring for an impaired family member and to evaluate the effectiveness of intervention programs, 34 caregivers of relatives with dementia completed an amended form of the Philadelphia Geriatric Center's Caregiver Survey and two…
Huang, Huei-Ling; Shyu, Yea-Ing L; Chen, Min-Chi; Huang, Chin-Chang; Kuo, Hung-Chou; Chen, Sien-Tsong; Hsu, Wen-Chuin
The purpose of this study was to explore family caregivers' role-implementation experiences at different stages of dementia. For this cross-sectional, exploratory study, 176 dyads of family caregivers and their community-dwelling elderly relatives with dementia were recruited from the neurological clinics of a medical center in Taiwan. The Family Caregiving Inventory was used to assess family caregivers for caregiving activities, role strain, role preparation, and help from others at different stages of care receivers' dementia. Family caregivers' caregiving activities were related to patients' stages of dementia. For patients with mild dementia, caregivers provided more assistance in transportation and housekeeping. In addition to these two activities, family caregivers of patients with moderate dementia provided more assistance with mobility and protection. For patients with severe dementia, family caregivers provided more assistance with personal care, mobility and protection, transportation, and housekeeping. Overall, family caregivers reported having some preparation to provide care; the most difficult caregiving activity was identified as managing behavioral problems. This study's results provide a knowledge base for designing dementia stage-specific interventions in clinical practice and developing community-based, long-term care systems for families of patients with dementia.
Wittenberg, Elaine; Goldsmith, Joy; Ferrell, Betty; Ragan, Sandra L
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.
... caregiver responsibilities. 52.71 Section 52.71 Pensions, Bonuses, and Veterans' Relief DEPARTMENT OF....71 Participant and family caregiver responsibilities. The program management has a written statement of participant and family caregiver responsibilities that are posted in the facility and provided to...
Choi, Sora; Park, Myonghwa
The purposes of this study were to develop and test a prediction model for caregiving experiences including caregiving satisfaction and burden in dementia family caregivers. The stress process model and a two factor model were used as the conceptual frameworks. Secondary data analysis was done with 320 family caregivers who were selected from the Seoul Dementia Management Survey (2014) data set. In the hypothesis model, the exogenous variable was patient symptomatology which included cognitive impairment, behavioral problems, dependency in activity of daily living and in instrumental activity of daily living. Endogenous variables were caregiver's perception of dementia patient's unmet needs, caregiving satisfaction and caregiving burden. Data were analysed using SPSS/WINdows and AMOS program. Caregiving burden was explained by patient symptomatology and caregiving satisfaction indicating significant direct effects and significant indirect effect from unmet needs. The proposed model explained 37.8% of the variance. Caregiving satisfaction was explained by patient symptomatology and unmet needs. Mediating effect of unmet needs was significant in the relationship between patient symptomatology and caregiving satisfaction. Results indicate that interventions focusing on relieving caregiving burden and enhancing caregiver satisfaction should be provided to caregivers with high levels of dementia patients' unmet needs and low level of caregiving satisfaction.
... Coping with Alzheimer’s COPD Caregiving Take Care! Caregiver Statistics Statistics on Family Caregivers and Family Caregiving Caregiving Population ... Health Care Caregiver Self-Awareness State by State Statistics Caregiving Population The value of the services family ...
Schene, A. H.; van Wijngaarden, B.; Koeter, M. W.
This article focuses on (1) the dimensionality of the caregiving concept; (2) the relation between the identified caregiving dimensions and characteristics of the patient, the caregiver, and their relationship; and (3) the relation between caregiving dimensions and caregiver distress. Findings are
Moore, Crystal Dea
A cross-sectional study of 76 family caregivers of older veterans with congestive heart failure utilized the McMaster model of family functioning to examine the impact of family functioning variables (problem solving, communication, roles, affective responsiveness, and affective involvement) on caregiver burden dimensions (relationship burden,…
Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee
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.
Joseph, Christine L M; Havstad, Suzanne; Johnson, Christine C; Vinuya, Rick; Ownby, Dennis R
It is unknown if teenagers and caregivers give similar responses when interviewed about the teen's asthma. We analyzed data for 63 urban African-American teen-caregiver pairs. Caregivers underestimated teen smoking by 30%, gave lower estimates for teen exposure to passive smoke, and disagreed with teens on controller medication usage. Teen-caregiver responses were not significantly different for estimates of symptom-days, activity limitations, or nights awakened; nor were they significantly different for report of emergency department visits or hospitalizations. Agreement was weak for perceived asthma control and severity. Teen-caregiver agreement on asthma depends on the type of information being sought.
Joseph, Christine L.M.; Havstad, Suzanne; Johnson, Christine C.; Vinuya, Rick; Ownby, Dennis R.
It is unknown if teenagers and caregivers give similar responses when interviewed about the teen’s asthma. We analyzed data for 63 urban African-American teen-caregiver pairs. Caregivers underestimated teen smoking by 30%, gave lower estimates for teen exposure to passive smoke, and disagreed with teens on controller medication usage. Teen-caregiver responses were not significantly different for estimates of symptom-days, activity limitations, or nights awakened; nor were they significantly different for report of emergency department visits or hospitalizations. Agreement was weak for perceived asthma control and severity. Teen-caregiver agreement on asthma depends on the type of information being sought. PMID:16517427
Røthing, Merete; Malterud, Kirsti; Frich, Jan C
AIM: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family. METHODOLOGY: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide...... for impairments by taking on adult responsibilities, and in some families, a child had the role as main caregiver. The increasing need for care could cause conflicts between the role as family member and family caregiver. The burden of care within the family could fragment and isolate the family. CONCLUSIONS....... The participants were recruited through hospital departments and a lay organisation for HD in Norway. Data from the interviews were analysed with systematic text condensation. RESULTS: Huntington's disease could have a substantial impact on the family system, the shape of roles among family members...
Dhar, V Erica
This article concerns how globalization and the aging of the world's population are affecting the already complex issue of intergenerational transnational caregiving. Globalization has caused an increase in workforce mobility with large numbers of individuals seeking employment overseas. This, coupled with increased longevity globally, has resulted in many workers leaving their elderly parents in need of care in their home countries. This has spawned caregiving across national borders, or caring for family relations across nations. Currently in the United States, not enough emphasis is given to family caregiving. Data compiled by AARP and the National Alliance for Caregiving estimate the economic value for this group of family caregivers in 2007 to be $375 billion, accounting for 34-52 million family caregivers per given year. This does not include those families who are transnational caregivers. The seminal work in this emerging field has been done by social anthropologists Loretta Baldassar, Cora Velekoop Baldock, and Raelene Wilding, who have defined the components of transnational caregiving based on an ethnographic study using qualitative data to study nine immigrant communities in Western Australia. Although their research focused on caregiving from a distance, additional work has been added to the discussion by introducing the element of "care drain" and further cultural perspectives. Therefore, this research is an exploratory study on intergenerational transnational caregiving within the context of the changing world and its demographics. Within the context of globalization and global aging, the following questions are addressed: What is the significance of family caregiving? What is a transnational? How has technology changed "transnationalism" today? What are the elements that comprise transnational caregiving? How does culture play a role in transnational caregiving? What are some of the national initiatives undertaken by governments to aid in workforce
Aaliah G. Elnasseh
Full Text Available This study examined whether healthier family dynamics were associated with higher personal strengths of resilience, sense of coherence, and optimism among dementia caregivers in Argentina. Caregivers are usually required to assist individuals with dementia, and family members have typically fulfilled that role. Personal strengths such as resilience, sense of coherence, and optimism have been shown to protect caregivers from some of the negative experiences of providing care, though the family-related variables associated with these personal strengths are largely unknown. Hierarchical multiple regressions investigated the extent to which family dynamics variables are associated with each of the caregiver personal strengths after controlling for demographic and caregiver characteristics. A sample of 105 caregivers from Argentina completed a set of questionnaires during a neurologist visit. Family dynamics explained 32% of the variance in resilience and 39% of the variance in sense of coherence. Greater family empathy and decreased family problems were uniquely associated with higher resilience. Greater communication and decreased family problems were uniquely associated with higher sense of coherence. Optimism was not found to be significantly associated with family dynamics. These results suggest that caregiver intervention research focused on the family may help improve caregiver personal strengths in Argentina and other Latin American countries.
Wittenberg, Elaine; Ferrell, Betty; Koczywas, Marianna; Ferraro, Catherine
Problematic communication among providers, patients, and their family members can affect the quality of patient care, causing stress to all parties involved and decreased opportunities for collaborative decision making. . The purpose of this article is to present one case from a pilot study of a family caregiver intervention focused on communication. . The nurse-delivered communication intervention includes a written communication guide for family caregivers, as well as a one-time nurse communication coaching call. The call is aimed at identifying caregiver communication concerns, providing communication education, and role playing problematic communication. . Psychological distress and caregiver confidence in communication were improved for the caregiver. Data presented from the case study demonstrate the need for family caregiver communication support and training and the potential benefits of such training.
Dai, Baozhen; Mao, Zongfu; Wu, Bei; Mei, Y John; Levkoff, Sue; Wang, Huali
This study examined the perception of Alzheimer's disease (AD) and caregiving among family caregivers of individuals with mild cognitive impairment (MCI) and AD in China. In-depth semistructured interviews were conducted with 46 family caregivers of individuals with cognitive impairment in 2009 in Wuhan and Beijing, China. Participants included 38 spouses, 7 adult children, and 1 sibling, aged between 41 and 85 years old. The findings showed that all family caregivers thought the Chinese terminology of AD laonian chidai, brought discrimination to individuals with cognitive impairment. Caregivers of individuals with AD experienced burden and desired an increase of formal services. Traditional beliefs of respecting elders and caring for extended family members were held among family caregivers of individuals with cognitive impairment, and there was nearly no difference found between caregivers of AD and those of MCI. It implied that traditional culture provided positive influences on caring for elders with cognitive impairment. An alternative term for MCI may contribute to further reducing the discrimination brought by the old Chinese terminology of AD laonian chidai. Development of formal services for elders with cognitive impairment may contribute to reducing caregivers' worries about future caregiving.
Background Severe illness can disrupt family life, cause family dysfunction, strain resources, and cause caregiver burden. The family's ability to cope with crises depends on their resources. This study sought to assess families of children with cancer in terms of family function-dysfunction, family caregiver strain and the adequacy of family resources using a new family resources assessment instrument. Methods This is a cross-sectional study involving 90 Filipino family caregivers of children undergoing cancer treatment. This used a self-administered questionnaire composed of a new 12-item family resources questionnaire (SCREEM-RES) based on the SCREEM method of analysis, Family APGAR to assess family function-dysfunction; and Modified Caregiver Strain Index to assess strain in caring for the patient. Results More than half of families were either moderately or severely dysfunctional. Close to half of caregivers were either predisposed to strain or experienced severe strain, majority disclosed that their families have inadequate economic resources; many also report inaccessibility to medical help in the community and insufficient educational resources to understand and care for their patients. Resources most often reported as adequate were: family's faith and religion; help from within the family and from health providers. SCREEM-RES showed to be reliable with Cronbach's alpha of 0.80. There is good inter-item correlation between items in each domain: 0.24-0.70. Internal consistency reliability for each domain was also good: 0.40-0.92. Using 2-point scoring system, Cronbach's alpha were slightly lower: full scale (0.70) and for each domain 0.26-.82. Results showed evidence of association between family resources and family function based on the family APGAR but none between family resources and caregiver strain and between family function and caregiver strain. Conclusion Many Filipino families of children with cancer have inadequate resources, especially economic
Corcoran, Mary A
An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding this thinking-action process has important implications for future research and service. Reasoned action theory provides empirical evidence that attitudes and beliefs, as they are influenced by the social environment, predict intentions to act. In turn, behavioral intentions can reliably predict behaviors. This grounded theory study describes a typology of caregiving styles relevant to family members of an individual with ADRD, where caregiving style is defined as a culturally based pattern in thinking and action. The goal of this study was to characterize the relationship between caregiver intentions and care strategies. Study participants included 97 individuals residing in the Washington, DC, area, who provide daily care for a family member with ADRD. Narrative data were collected from each caregiver during three 1-hr interview sessions. A subset of 30 caregiver-care recipient (CR) dyads was videotaped during typical interactions. Four caregiving styles were identified (facilitating, balancing, advocating, and directing), which differ primarily in the intended focus of care and preferred interactions with the CR. The results provide a foundation for future studies of the relationships between sociocultural context, caregiving styles and strategies, and ensuing outcomes for caregiver-CR dyads.
Hui, Siu-Kuen Azor; Elliott, Timothy R; Martin, Roy; Uswatte, Gitendra
The relations of caregiver attributions about care-recipient's problem behaviour to caregiving relationship satisfaction and caregiver distress were examined. This is a cross sectional study. Seventy-five family caregivers of individuals diagnosed with various disabling health conditions were recruited and interviewed. Caregiver attributions (internality, intentionality, responsibility, and controllability), caregiving relationship satisfaction, and caregiver distress variables were measured. Structural equation techniques tested an a priori model of the latent constructs of caregiver attributions and caregiver relationship satisfaction to caregiver distress. Maladaptive caregiver attributions (i.e., more trait, higher intentionality, higher responsibility, and higher controllability) about care-recipients' problem behaviours predicted lower caregiving relationship satisfaction, which in turn was predictive of higher caregiver distress. Unexpectedly, caregiver attributions were not directly related to caregiver distress. However, attributions had an indirect effect on distress through relationship satisfaction. Younger caregivers experienced higher caregiver distress. Caregivers' explanations about care-recipient's problem behaviour are indicative of their satisfaction in the relationship with the care recipient, and poor caregiving relationship satisfaction is predictive of caregiver distress. Caregiver attributions and relationship quality may be considered in interventions with family caregivers. ©2010 The British Psychological Society.
Lynch, Susan H; Lobo, Marie L
An analysis of the concept of compassion fatigue in family caregivers. The term 'compassion fatigue' is predominantly used with professional caregivers, such as nurses, doctors and social workers. Secondary traumatic stress, burnout, and other related terms are often cited in the literature in conjunction with compassion fatigue. Although compassion fatigue is linked to professional caregivers as a result of exposure to traumatizing events, minimal knowledge has been developed regarding its presence in family caregivers. Literature published between 1980-2010 from the humanities, nursing and the social sciences, including psychology, sociology, social work, and religion, was reviewed. Data sources included dictionaries, newspapers and multiple academic databases, such as Academic Search Complete, Atla, CINAHL, PsychInfo, and PubMed. Wilson's concept analysis strategy was employed to frame the analysis of compassion fatigue, using model, contrary, related, and borderline cases to illustrate the concept's meaning in relation to family caregivers. Analysis revealed that the concept is predominantly used in relation to healthcare providers. Parallels are drawn between the role of healthcare providers and family caregivers. Compassion fatigue occurs when a care-giving relationship founded on empathy potentially results in a deep psychological response to stress that progresses to physical, psychological, spiritual, and social exhaustion in the family caregiver. This concept analysis clarified the definition and revealed that the concept of compassion fatigue has potential use with family caregivers. Implications for practice and research are identified. © 2012 Blackwell Publishing Ltd.
Park, Myonghwa; Sung, Mira; Kim, Sun Kyung; Kim, Sungjin; Lee, Dong Young
Caregiver burden is a complex and multidimensional construct. Although previous studies have explored numerous factors associated with caregiver burden, these factors have not been identified with a large population-based sample in a theory-based multidimensional way. This study explores multidimensional determinants associated with family caregiver burden to determine the main contributors of caregiver burden in Alzheimer's disease (AD) using a large community dataset. A retrospective secondary data analysis was conducted on 1,133 patients with AD and 1,133 primary caregivers who were registered in a metropolitan city dementia center in South Korea. The patient data included socio-demographic and disease profiles. The caregiver data consisted of socio-demographic and caregiving profiles. The study results identified that dementia-related factors were the most significant factors, representing 25.6% of caregiver burden and were followed by caregiving-related factors explaining caregiver burden significantly. Behavioral problems and instrumental activities of daily living (IADL) dependency of the patient, spousal relationship, hours of caregiving, and the number of diseases associated with the caregiver were found to be significant individual variables. It is vital to develop a service and support program with a greater emphasis on the behavioral problems and IADL deficiency of patients with AD as well as on improving the competence ability of caregivers to deal with such difficulties.
Nemati, Shahnaz; Rassouli, Maryam; Ilkhani, Mahnaz; Baghestani, Ahmad Reza
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.
Gómez-Marcos Manuel Á
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.
Wittenberg-Lyles, Elaine; Debra, Parker Oliver; Demiris, George; Rankin, Anna; Shaunfield, Sara; Kruse, Robin L
The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. Empathic opportunities and hospice team responses were analyzed from bi-weekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgements of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers. Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.
Vehvilainen, L.; Zielstorff, RD; Gertman, P.; Tzeng, MC; Estey, G.
This poster describes a secure Internet-based application called the Alzheimer's Caregiver Internet Support System (ACISS). ACISS was designed to provide clinical, decision-making and emotional support to family caregivers of Alzheimer's disease (AD) patients. Results from a 6-month field trial of two versions of ACISS with 42 caregiver/patient dyads in Eastern Massachusetts are presented. Physical, psychological and social health parameters, user satisfaction, and system usage are measured u...
Hiyoshi, Kazuko; Becker, Carl; Siwaku, Kuninori; Kinoshita, Ayae
The purpose of this study is to determine the correlation between home-based elder care and marital satisfaction. Care managers distributed a questionnaire to home caregivers in order to assess the items such as annual income, marital satisfaction, Zarit caregiver burden, sleeping hours and how often they have to get up in the night to take care of the elder. A total of 149 caregivers completed the questionnaire. Their marital satisfaction was inversely correlated to caregiver burden, but positively correlated with annual income. Subjective psychological perception of caregiver burden was the most important factor influencing a marital satisfaction. It appears that a marital satisfaction depend far more on subjective perception of caregiver burden than on more objective measurements of caregiver burden.
... Lupus Planning Ahead Caregiving Tools & Tips Parenting with Lupus Exercise and Nutrition Family Life and Relationships Fast Facts Financial Resources: ... identify people who can help. PDF Diet and nutrition with lupus In general, you should always try to eat ...
Steiner, Victoria; Pierce, Linda L; Salvador, Diane
Understanding caregiver needs is essential when caring for people with dementia. The aim of this study was to identify family caregivers' information needs as perceived by home care workers and the caregivers themselves. This study used a descriptive survey design and convenience sampling. The two groups of care providers were given a list of 48 items and asked to choose caregivers' top 10 information needs. Group 1 (n = 33 unpaid family caregivers) identified dealing with behavior changes and group 2 (n = 59 paid home care workers) identified providing personal care as most important. While differences between these groups emerged, both care providers chose more items related to needing help for the care recipient, than items related to needing help for the caregivers themselves, e.g., support group. These information needs can be used by rehabilitation nurses and other healthcare professionals to develop educational materials and supportive interventions. © 2015 Association of Rehabilitation Nurses.
Ellington, Lee; Cloyes, Kristin G; Xu, Jiayun; Bellury, Lanell; Berry, Patricia H; Reblin, Maija; Clayton, Margaret F
ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support. Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.
Powell-Cope, Gail; Pippins, Karla M; Young, Heather M
: This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.The articles in this new installment of the series explain principles for promoting safe mobility that nurses should reinforce with family caregivers. Each article also includes an informational tear sheet-Information for Family Caregivers-that contains links to instructional videos. To use this series, nurses should read the article first, so they understand how best to help family caregivers, and then encourage the caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.
Røthing, Merete; Malterud, Kirsti; Frich, Jan C.
Family members in families with severe chronic disease play importantroles in care-giving. In families affected by Huntington’s disease (HD), caregivers encounter practical and emotional challenges and distress.Enduring caregiver burdens may lead to problems and caregivers are inneed of social...... support and health services to deal with challenges. Wewanted to explore coping strategies and behaviour patterns used byfamily caregivers to care for themselves, while caring for a familymember with HD. Participants were recruited from hospitals andcommunity-based healthcare. The sample represents...... and the need for care for affected familymember(s). As the disease progressed, the balance was skewed, and thefamily caregivers’ participation in social activities gradually decreased,resulting in experiences of isolation and frustration. In later stages of thedisease, the need for care gradually overshadowed...
Cil Akinci, Ayse; Pinar, Rukiye
To investigate the validity and reliability of the Caregiver Burden Scale in family members who provide primary care for haemodialysis patients. In Turkey, there is a need for a multi-dimensional instrument to evaluate the caregiver burden in people who provide care for patients with chronic diseases. A methodological study. The study sample consisted of 161 family members who provide primary care for haemodialysis patients. The forward-backward translation method was used to develop the Turkish Caregiver Burden Scale. The reliability was based on internal consistency investigated by Cronbach's alpha and item-total correlation. The factorial construct validity of the scale was tested with confirmatory factor analysis. By means of convergent and divergent validity, correlation between Caregiver Burden Scale and 36-Item Short Form Health Survey (SF-36) and correlation between Caregiver Burden Scale and the Maslach Burnout Scale were investigated. Cronbach's alpha and item-total correlations results suggested that there was good internal reliability. We found five underlying factors similar to original Scale's five-factor solution. The confirmatory factor analysis five-factor model represented an acceptable fit. Factor loadings were significant, with standardised loadings ranging from 0·43-0·81. By means of divergent validity, all sub-dimension scores and the total score of the Caregiver Burden Scale were negatively correlated with the SF-36, whereas there was a positive correlation with the emotional exhaustion and depersonalisation subscales of the Maslach Burnout Scale as expected. These results suggest that the Caregiver Burden Scale is a reliable and valid instrument which can be used with confidence in Turkish caregivers for haemodialysis patients to screen caregiver burden. The burden experienced by people who provide care for patients with chronic diseases can be evaluated with the Caregiver Burden Scale. Additionally, the Caregiver Burden Scale can be used
White, Carole L; Overbaugh, Kristen J; Pickering, Carolyn E Z; Piernik-Yoder, Bridgett; James, Debbie; Patel, Darpan I; Puga, Frank; Ford, Lark; Cleveland, James
There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development. We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis. We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future. Incorporating caregiver and
Goodman, Catherine Chase; Pynoos, Jon
Describes telephone network bringing family caregivers of Alzheimer's victims together over telephone in rotating pattern of twosomes. Explains how five caregiving spouses and five adult children were matched and connected over three months. Describes program's 25 telephone-accessed audiotapes that guided networks and provided information on…
Werner, Perla; Mittelman, Mary S.; Goldstein, Dovrat; Heinik, Jeremia
Purpose: The stigma experienced by the family members of an individual with a stigmatized illness is defined by 3 dimensions: caregiver stigma, lay public stigma, and structural stigma. Research in the area of mental illness suggests that caregivers' perception of stigma is associated with increased burden. However, the effect of stigma on…
Coke, Sallie P; Moore, Leslie C
Children with vulnerable caregivers may be at risk for being labeled as having behavior problems when typical behaviors are viewed by their caregivers as problematic, and therefore, research examining the accuracy of the caregivers' perceptions of children's behaviors is needed. The purpose of this study was to use the resiliency model of family stress, adjustment, and adaptation as the theoretical foundation to explore family factors associated with the primary female caregiver's appraisal of her child's behavior, the extent to which the primary female caregiver's appraisal of her child's behavior may be distorted, and the child's level of risk of having a behavioral problem. A cross-sectional, correlational design was used. Data were collected from female caregivers of preschoolers (N = 117). Family factors, demographic characteristics, comfort in parenting, appraisal of behaviors, daily stress, parenting stress, depressive symptoms, social support, ratings of children's behaviors, and distortion in the ratings were measured. Associations were studied using ANOVA, ANCOVA, and chi-squared tests. Family typology was not associated with the female caregiver's appraisals of her child's behavior (p = .31). Distortion of the caregiver's rating of her child's behavior was not associated with family hardiness (high or low; p = .20.) but was associated with having a child with an elevated risk for behavioral problems (p < .01). Families classified as vulnerable were significantly more likely to have a child with elevated risks of having behavioral problems than families classified as secure or regenerative. Findings emphasized the association between family factors (hardiness and coherence) and young children's behaviors. Additional research is needed into how these factors affect the young child's behavior and what causes a caregiver to have a distorted view of her child's behavior.
Washington, Karla T; Rakes, Christopher R
Hospice family caregivers must often cope with significant stressors. Research into the ways caregivers attempt to cope with these stressors has been challenged by pronounced difficulties conceptualizing, measuring, and categorizing caregiver coping. The purpose of this study was to begin addressing these challenges by determining the structure of coping among hospice family caregivers. Hospice family caregivers (n = 223) residing in the midsouthern U.S. completed the Ways of Coping Questionnaire as part of a cross-sectional survey. To examine the validity of various coping response factor structures, researchers conducted multiple confirmatory factor analyses. Although individual coping behaviors were able to be sorted into broader "ways of coping" (i.e., first-order factors), data did not support the further grouping of ways of coping into more general "families of coping" (i.e., second-order factors). Folkman and Lazarus's proposed structure of coping, which comprises eight first-order factors or subscales, better fit the data than the tested alternatives. Despite its broad appeal, grouping ways of coping responses into families of coping based on the presupposed nature of the responses (e.g., positive or negative) lacked empirical support for this sample of hospice family caregivers, which suggests that relying on families of coping may oversimplify complex responses from caregivers. Rather than trying to characterize coping responses into broader families, hospice support for caregiver coping strategies may be more effective when based on individualized assessments of each caregiver's ways of coping and the consequences of those coping responses on their quality of life. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Sullivan, Karen A; Beattie, Elizabeth; Khawaja, Nigar G; Wilz, Gabriele; Cunningham, Lauren
To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable. A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n = 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; M age = 64.30, standard deviation = 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively. The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r = .287, p = .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items. This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs. © The Author(s) 2014.
Miyawaki, Christina E
This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults.
Carlene Souza Silva Manzini
Full Text Available Resilience is the capacity that people have to cope positively with adversities. A cross-sectional, quantitative study, that aimed to assess factors associated with the resilience of family caregivers of elderly with Alzheimer’s disease. Sixty-six caregivers composed the sample, who were accompanied in a neurology ambulatory. Most caregivers presented moderate resilience. Linear regression showed that some factors interfered with caregivers’ resilience, being those: overload, the increment of days dedicated to caregiving, the level of kinship daughter-in-law/son-in-law or spouse, and practice of other activities besides caregiving. The findings can be useful in care-related areas, once we identified variables interfering in resilience, and those can be worked and improved to benefit the caregiver and the patient.
Hansen, Dana; Sheehan, Denice K; Stephenson, Pam
Illness blogs are a way seriously ill people communicate publicly about their illness journey. As communication about serious illness increases on social media, it is important to evaluate how this affects the family caregiver. However, identifying and accessing family caregivers remains challenging, especially via social media. The aim of this article is to report the opportunities, challenges and lessons learned from using social media to recruit family caregivers. Recruitment methods included posting study invitations on illness blogs, advertising through Facebook and placing study fliers in the community. Using social media to recruit was inexpensive and provided a wide geographical reach. One important finding was discovering the importance of using language in the recruitment materials that family caregivers could identify with to help deem themselves as eligible to participate in the study.
Ribé, José M; Salamero, Manel; Pérez-Testor, Carles; Mercadal, Josep; Aguilera, Concepción; Cleris, Margarida
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.
Paulson, Daniel; Lichtenberg, Peter A.
The present research investigates differences between primary informal caregivers who were in the care recipient’s immediate family (adult children or spouses) versus those primary caregivers who were outside the immediate family. Measurement occurred at the time of admission of the care recipient to an urban nursing home. We hypothesized that immediate family caregivers would report greater behavioral disturbance among care recipients and increased caregiver depression and stress. Data were ...
Rodríguez-Sánchez, Emiliano; Pérez-Peñaranda, Aníbal; Losada-Baltar, Andrés; Pérez-Arechaederra, Diana; Gómez-Marcos, Manuel Á; Patino-Alonso, Maria C; García-Ortiz, Luís
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. We conducted a cross-sectional study including 153 caregivers. 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. 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 (pfamily functionality, while social support is the quality dimension that is least influenced by the Family APGAR-Q. 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. © 2011 Rodríguez-Sánchez et al; licensee BioMed Central Ltd.
Menezes, Marina; Moré, Carmen Leontina Ojeda Ocampo; Barros, Luísa
Objective To identify and analyze the significant networks of family, social and hospital support described by the family caregivers of hospitalized children 5-12 years during the hospital stay. Method Descriptive study, exploratory and qualitative study conducted with 20 caregivers of children hospitalized in a hospital in a city in southern Brazil, through semi-structured interviews and significant social networks maps, tailored to the hospital setting. Results Data analysis showed that t...
Dementia family caregiving has been the focus of research for decades. Much has been learned about the negative impact of caregiving as well as characteristics that may be protective. This paper explores themes in caregiving pertinent to clinicians and researchers working with dementia family caregivers: the psychological, subjective, and physical outcomes of caregiving, ways in which dementia alters relationships between the patient and caregiver, and strategies for improving outcomes for caregivers. Suggestions for next steps in research and clinical care are made.
Pennacchini, M; Tartaglini, D
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"
Friedemann, Marie-Luise; Buckwalter, Kathleen C
This study described and contrasted family caregivers and explored the effect of gender and family relationship on the caregiver's role perception, workload, burden, and family help. Home care agencies and community organizations assisted with the recruitment of 533 multicultural, predominantly Latino caregivers who were interviewed at home. The Caregiver Identity Theory guided the study. Survey instruments were standardized tools or were constructed and pretested for this study. Descriptive statistics and t-test analyses assisted in describing the sample, and multivariate analyses were used to contrast the caregiver groups. Findings suggested a gendered approach to self-appraisal and coping. Men in this predominantly Latino and Caribbean sample felt less burden and depression than women who believed caregiving is a female duty. Family nurses should pay attention to the most vulnerable groups-older spouses resistant to using family and community resources and hard-working female adult children-and assess each family situation individually. © The Author(s) 2014.
Khalaila, Rabia; Litwin, Howard
To examine the effects of filial piety - the practice of filial respect of and care for parents - on depressive symptoms among adult children caregivers of elderly Arab parents in Israel, and to identify factors that may mediate the association. Cross-sectional data were collected in 2006-2007 by a structured interview from 250 randomly sampled Arab-Israeli adult children caregivers (response rate, 94%). Path analysis was used to examine the study objectives. Filial piety was not directly related to depression, but rather worked indirectly through caregiving burden. Caregiver depression was predicted positively by caregiving burden, while burden was predicted negatively by filial piety. Sense of mastery emerged as a major (negative) predictor and as a mediator between caregiving burden and depressive symptoms. The analysis showed that caregiving burden in this population of traditional caregivers was associated with depressive symptoms, while most other variables were mediated through caregiving burden, sense of mastery, or filial piety. Researchers and practitioners should be sensitive to issues of family care among such traditional populations in transition.
Mitrani, Victoria B.; Lewis, John E.; Feaster, Daniel J.; Czaja, Sara J.; Eisdorfer, Carl; Schulz, Richard; Szapocznik, Jose
Purpose: The purpose of the study was to evaluate the role of family functioning in the stress process in a sample of caregivers of dementia patients by using a structural family framework. The stress-process model of caregiver distress included family functioning as an intervening variable in the relationship between objective burden and…
Kugler, Brittany B.; Burke, Natasha L.; Bloom, Marlene; Truax, Tatyana V.; Kaercher, Lauren B.; Storch, Eric A.
The purpose of this study was to investigate agreement and theoretically relevant moderators of agreement between non-parent caregivers and teachers in a sample of traumatized youth. Two hundred eleven children (ages 5-16 years) who had experienced abuse and/or neglect were administered the Trauma Symptom Checklist for Children (TSCC) shortly…
Padierna, Angel; Martín, Josune; Aguirre, Urko; González, Nerea; Muñoz, Pedro; Quintana, José Ma
Eating disorders (EDs) in a close relative can be particularly stressful for family members. To assess the perceived burden of caregivers of patients with EDs and to identify demographic and clinical variables that could predict this burden. We conducted a cross-sectional study involving 145 ED patients and 246 related caregivers. ED patients completed the Health-Related Quality of Life in ED-short form, the Hospital Anxiety and Depression Scale, and the Short Form-12. Caregivers completed the Involvement Evaluation Questionnaire-EU version, the Short Form-12, the Hospital Anxiety and Depression Scale, and the Anorectic Behaviour Observation Scale. Descriptive statistics, ANOVA, Chi-square, and Fisher's exact test were applied to examine the inter-variable relationships. A high burden of caregiving was associated with being divorced (β = 14.23, SE = 3.88; p = 0.001), having a low level of education (β = 4.70, SE = 1.96; p = 0.02), having high levels of anxiety (β = 5.45, SE = 2.13; p = 0.01) or depression (β = 5.74, SE = 2.80; p = 0.04), and caring for a relative with a low physical quality of life (β = 5.91, SE = 1.78; p = 0.002). Evaluating family caregivers of patients with ED for risk factors for increased caregiver burden and offering them assistance could reduce their perceived burden of caregiving.
McGuire-Schwartz, Mandy; Small, Latoya A.; Parker, Gary; Kim, Patricia; McKay, Mary
Homelessness affects a large and increasing number of families in the United States, and exposure to violence and other potentially traumatic events is common among homeless families. It is important to understand more about this population and, more specifically, about the relationship between youth mental health and caregiver mental health and…
Kajiwara, Kohei; Nakatani, Hisae; Ono, Mitsu; Miyakoshi, Yukiko
We attempted to determine the factors that influence the continuation of in-home caregiving for patients with dementia. The participants were family caregivers of dementia patients who received home care services. Data were collected via a questionnaire completed by caregivers and then returned in the mail. Of the 705 caregivers who received the questionnaire, 405 completed and returned it (response rate: 57.4%). The average age of the caregivers was 63.9 ± 11.5 years, and they had been providing care for an average of 5.1 ± 4.1 years. The average age of the patients was 84.7 ± 7.4 years. We analyzed the path model. Caregivers' current feelings about continuing caregiving were directly affected by a positive appraisal of caregiving (β = 0.20, P caregiving of patients with worsening symptoms was directly affected by a positive appraisal of caregiving (β = 0.15, P caregivers (β = -0.46, P caregiving was indirectly affected by the patients' cognitive impairment and by the behavioral and psychological symptoms of dementia score. The continuation of in-home caregiving among caregivers of patients with dementia was affected by both positive appraisal and caregiver burden. In addition, the present study revealed that behavioral and psychological symptoms of dementia score indirectly affects the continuation of caregiving by directly affecting caregiver burden. © 2014 The Authors. Psychogeriatrics © 2014 Japanese Psychogeriatric Society.
Nissen, Kathrine Grovn; Trevino, Kelly; Lange, Theis
CONTEXT: Caring for a family member with advanced cancer strains family caregivers. Classification of family types has been shown to identify patients at risk of poor psychosocial function. However, little is known about how family relationships affect caregiver psychosocial function. OBJECTIVES...... Study) were analyzed using Gaussian Mixture Modeling as the primary method to identify family types based on the Family Relationship Index questionnaire. We then examined the relationship between family type and caregiver quality of life (Medical Outcome Survey Short Form), social support (Interpersonal...... of quality of life and perceived social support in comparison to supportive family types. CONCLUSIONS: The study identified supportive, low-expressive, and detached family types among caregivers of advanced cancer patients. The supportive family type was associated with the best outcomes and detached...
Oven Ustaalioglu, Basak; Acar, Ezgi; Caliskan, Mecit
We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p caregiver burden were also higher in depressive groups (p caregiver role was negatively correlated (p caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.
Ng, H Y; Griva, K; Lim, H A; Tan, J Y S; Mahendran, R
This study explores (1) the motivations and challenges facing family caregiving for cancer in Singapore and (2) suggests a possible framework to guide culturally sensitive future work on caregivers. Twenty caregivers of patients being treated for cancer at a public hospital in Singapore were interviewed. A semi-structured interview format and inductive thematic analysis were used to analyse the data. Caregivers were asked about their motivations for caregiving and the challenges they faced. Caregivers' motivations grouped into three categories: personal value and fulfilment, giving care because of societal expectations such as filial piety, and practical need. Challenges were grouped into interpersonal challenges, disclosure and finding balance. Caregivers with different primary motivations varied in their responses to these challenges. More autonomous caregivers cited learning points and reprioritised more effectively than less autonomous caregivers, who reported more internal conflict and less control over their situation. In Singapore and Asia, sociocultural values of family caregiving are not uniformly experienced as positive, and may be burdensome for caregivers who give care primarily for extrinsic motivations. As family caregiving needs increase, targeted psychosocial support for caregivers with less autonomous behavioural orientations may pre-empt caregiver burnout and burden.
Røthing, Merete; Malterud, Kirsti; Frich, Jan C
BACKGROUND: Collaboration between family caregivers and health professionals in specialised hospitals or community-based primary healthcare systems can be challenging. During the course of severe chronic disease, several health professionals might be involved at a given time, and the patient......'s illness may be unpredictable or not well understood by some of those involved in the treatment and care. AIM: The aim of this study was to explore the experiences and expectations of family caregivers for persons with Huntington's disease concerning collaboration with healthcare professionals. METHODS......: To shed light on collaboration from the perspectives of family caregivers, we conducted an explorative, qualitative interview study with 15 adult participants experienced from caring for family members in all stages of Huntington's disease. Data were analysed with systematic text condensation, a cross...
Expert-reviewed information summary about the challenges faced by family caregivers of cancer patients. This summary focuses on typical caregiver roles and concerns, and helpful interventions for caregivers.
Nguyen, Kim Hanh; Dao, To Nhu; Vu, Phuoc; Arean, Patricia; Hinton, Ladson
The goal of this qualitative study was to describe the beliefs and experiences of Vietnamese caregivers caring for a family member with dementia and to elicit their ideas about promising interventions. We recruited 10 caregivers from support groups, the Alzheimer’s Association, and local community-based organizations in Northern California. We conducted semi-structured in-depth interviews with all caregivers, as well as a focus group to obtain ideas about supportive strategies. Several themes emerged from the data: (1) Filial piety was influential in caregiving; (2) A sense of loss/grief or trauma was pervasive; and (3) Caregivers had clear sources of stress and sources of support. An overarching theme underlying these three topics was that cultural beliefs, values, and expectations impacted the caregiving experience. Suggestions for promising interventions included education, language-congruent and/or telephone support groups, case management, inclusion of the care recipient in the intervention, and importance of credibility of the intervention. It also may be valuable to include an understanding of cultural values and promotion of spirituality and religion as key components. Findings highlight targets for dementia caregiver interventions to reduce burden and distress in an understudied population. PMID:26617956
Wolff, Jennifer L.; Giovannetti, Erin R.; Boyd, Cynthia M.; Reider, Lisa; Palmer, Sara; Scharfstein, Daniel; Marsteller, Jill; Wegener, Stephen T.; Frey, Katherine; Leff, Bruce; Frick, Kevin D.; Boult, Chad
Purpose: Guided Care (GC) is a model of health care for multimorbid older adults that is provided by a registered nurse who works with the patients' primary care physician (PCP). The purpose of this study was to determine whether GC improves patients' primary caregivers' depressive symptoms, strain, productivity, and perceptions of the quality of…
Rote, Sunshine; Angel, Jacqueline L.; Markides, Kyriakos
Using newly available data on family caregivers from a large epidemiological study of elderly Mexican-origin adults (Hispanic Established Population for the Epidemiologic Study of the Elderly [HEPESE], 2010/2011), we identify which types of impairment (functional, psychological, and cognitive) in the elderly individual are associated with family caregiver depressive symptoms. Results from ordinary least squares regressions using 626 caregiver–care recipient dyads demonstrate that more severe mobility limitations (Performance-Oriented Mobility Assessment), social disability (instrumental activities of daily living), neuropsychiatric disturbances related to cognitive decline (Neuropsychiatric Inventory), and depressive symptoms in the elderly subject are positively associated with caregiver psychological distress. Perceived social stress partially accounts for these associations. We also identify certain segments of this caregiver population that are especially vulnerable to burden when caring for a family member with high levels of impairment, namely female and low-income caregivers. These vulnerabilities should be the focus of intervention efforts to reduce stress and improve the emotional and psychological well-being of Mexican-origin caregivers. PMID:25651573
Lee, I; Chou, Fan-Hao; Chen, Chung-Hey
Due to the phenomenon of Taiwan'saging population has made, long-term care has become an issue of increasingly emphasized importance. According to the statistics, the family takes responsibility for most long-term care duties and more than 70% of primary family caregivers are female. In the past, because of gender-based divisions of labor and gender role expectations made, it was taken for granted that females would be the socially preferred family caregivers. Those men who devoting in themselves to such work were regarded as a rare precious. As such, family care signified entailed different life experiences for males and females. Over the years, amendments to the civil code have recognized family care contributions, and the allowance for caregivers underlines that care responsibilities have shifted away from the family to society. Traditional gender divisions of labor today are significantly more blurred; family structures have become smaller in size; female labor in the workplace has increased; and ten-year long-term care plans and long-term care insurance have been successively implemented. These transformations will make labor outsourcing more and more popular and transform family care from a private problem to a pubic policy issue. In the future, family caregivers require consideration and support on a sustained basis. It is also important to improve and monitor the quality of care services. Nurses, the major professional members of long-term care teams, should be concerned over the issue of family care while providing nursing care. They should include family caregivers in the care plan so that they can make sure that patients receive comprehensive and constant care in order to enhance the overall quality of nursing care.
Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Chen, Min-Chi; Yang, Pei-Shan
This paper is a report of a study that examined the effects of work demands, including employment status, work inflexibility and difficulty reconciling work and family caregiving, on role strain and depressive symptoms of adult-child family caregivers of older people with dementia. Family caregivers also employed for pay are known to be affected by work demands, i.e. excessive workload and time pressures. However, few studies have shown how these work demands and reconciliation between work and family caregiving influence caregivers' role strain and depressive symptoms. For this cross-sectional study, secondary data were analysed for 119 adult-child family caregivers of older people with dementia in Taiwan using hierarchical multiple regression. After adjusting for demographic characteristics, resources and role demands overload, family caregivers with full-time jobs (β=0.25, Pwork and caregiving roles (β=0.36, Pworking part-time or unemployed. Family caregivers with more work inflexibility reported more depressive symptoms (β=0.29, PWork demands affected family caregivers' role strain and depressive symptoms. Working full-time and having more difficulty reconciling work and caregiving roles predicted role strain; work inflexibility predicted depressive symptoms. These results can help clinicians identify high-risk groups for role strain and depression. Nurses need to assess family caregivers for work flexibility when screening for high-risk groups and encourage them to reconcile working with family-care responsibilities to reduce role strain. © 2010 Blackwell Publishing Ltd.
DePasquale, Nicole; Polenick, Courtney A; Davis, Kelly D; Moen, Phyllis; Hammer, Leslie B; Almeida, David M
An increasing number of adults, both men and women, are simultaneously managing work and family caregiving roles. Guided by the stress process model, we investigate whether 823 employees occupying diverse family caregiving roles (child caregiving only, elder caregiving only, and both child caregiving and elder caregiving, or "sandwiched" caregiving) and their noncaregiving counterparts in the information technology division of a white-collar organization differ on several indicators of psychosocial stress along with gender differences in stress exposure. Compared with noncaregivers, child caregivers reported more perceived stress and partner strain whereas elder caregivers reported greater perceived stress and psychological distress. With the exception of work-to-family conflict, sandwiched caregivers reported poorer overall psychosocial functioning. Additionally, sandwiched women reported more family-to-work conflict and less partner support than their male counterparts. Further research on the implications of combining a white-collar employment role with different family caregiving roles is warranted.
Amieva, H; Rullier, L; Bouisson, J; Dartigues, J-F; Dubois, O; Salamon, R
Family members of people suffering from Alzheimer's disease play a major role in providing daily life care for their relatives. Compared to non-caregivers, they present increased risks of mortality as well as psychological and physical co-morbidity. Altered relationships between caregivers and medical staff and dissatisfaction with the quality of help provided tend to increase the risk of depression and anxiety disorders among caregivers. The present study aimed at exploring the needs and expectations of family caregivers of patients with Alzheimer's disease who request medical assistance for their relatives. The present analysis is an ancillary study of a large multicentric controlled randomized study designed to assess the efficacy of three non-pharmacological treatments in Alzheimer's disease, in which 645 mild-to-moderate Alzheimer patients were enrolled. Needs and expectations of the caregivers were assessed with a French scale of patient expectations for medical consultation, the échelle d'attentes en matière de consultations (EAC), completed by caregivers during the inclusion visit. This scale consists in a self-administered 28-item questionnaire concerning four main needs: learning skills to improve daily life management of their relatives; information regarding the disease; improving caregivers' self-confidence; support to improve communication with their relatives. The ten items for which more than 40% of caregivers reported high or very high expectations referred to two main needs: information regarding the disease (treatment, prognosis…) and learning skills in order to improve daily life management of their relative. The predominance of such needs was observed whatever the relationship between the caregiver and the cared relative but seemed to be more pronounced in female spouses and children of patients with Alzheimer's disease. Needs and expectations of Alzheimer's disease family caregivers involve two major aspects: first, information regarding
Olga Marina Vega Angarita
Full Text Available Introduction: Because of the high demand and costs of care, chronic diseases have shown an increasing number of caregivers who develop their role without the required training and skill. Objective: To describe the capacity for home care of caregivers of patients with chronic illness in a service provider institution of San José de Cúcuta. Materials and methods: Descriptive quantitative cross-sectional study, developed in the fi rst half of 2017. The sample was composed by 360 caregivers of patients with chronic disease. We used the instruments developed by the Chronic Patient Care Group of the Faculty of Nursing of the National University of Colombia called: GCPC-UN-C © - technical characterization chart for family caregivers of patients with chronic non-transferable disease and the instrument “Caring” - short version to measure the competence of care at home. Results: In the study, low and medium levels of competence of the caregivers were reported in the exercise of their role, and the categories Knowledge and Enjoyment (Welfare were more affected. It is important to note that caregivers with a high level of competence were not reported. Conclusion: The results show that the need for nursing intervention in strengthening the competence of caregivers remains an important constant of professional performance.
Lau, Bobo Hi-Po; Cheng, Cecilia
Gratitude is widely perceived as a key factor to psychological well-being by different cultures and religions. The relationship between gratitude and coping in the context of familial dementia caregiving has yet to be investigated. This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach. Findings with 101 Chinese familial caregivers of persons with dementia (mean age = 57.6, range = 40-76; 82% women) showed that gratitude was related to the greater use of emotion-focused coping (positive reframing, acceptance, humour, emotional social support seeking, religious coping) and psychological resources (caregiving competence and social support). Psychological resources and emotion-focused coping in turn explained the association between gratitude and lower levels of psychological distress (caregiving burden and depressive symptoms). The present results indicate the beneficial role of gratitude on coping with caregiving distress and provide empirical foundation for incorporating gratitude in future psychological interventions for caregivers.
Lara de Sa Neves Loureiro
Full Text Available A cross-sectional, epidemiological study aimed to estimate the prevalence of burden among family caregivers of impaired elderly residents in the city of João Pessoa, and to identify associations between the mean burden and social and demographic characteristics of the elderly and the caregivers. A total number of 240 elderly residents in a previously drawn census tract participated in this research. The sample was composed of 52 elderly and their caregivers. For data collection, a questionnaire was applied with questions on social and demographic characteristics of elderly and caregivers, and the Burden Interview Scale was used. Results showed a high prevalence of burden among caregivers (84.6%, in which a statistically significant association was found with the following characteristics: retired elderly, elderly as head of family, spousal caregivers, and caregivers with less education. The findings of this study may contribute to the development of activities focused on formal and emotional support for the caregivers.
Henriksson, Anette; Årestedt, Kristofer
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.
Grossmont District Hospital, La Mesa, CA.
This demonstration program was designed to impart specific nursing, psychosocial, and community knowledge skills to caregivers, particularly those who themselves were older adults and were caring for a family member at home. Begun in October 1986, this program featured basic home nursing instruction and an orientation to the demands and rewards of…
Wong, Cindy C; Wallhagen, Margaret I
To identify strategies to assist family caregivers of individuals with frontotemporal dementia (FTD) in dealing with their caregiving demands, nurses must understand these family members' unique needs and how they currently deal with their demands. The purpose of this study was to examine the relationship between coping and caregiver physical and mental health among FTD family caregivers. Participants were primary caregivers of individuals with FTD (with behavioral symptoms) living at home (N = 61). A small positive association was noted between problem-focused coping and caregiver physical health (r = 0.29, p coping and caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (β = 0.46, p coping strategies when dealing with behavioral symptoms manifested by individuals with FTD. Copyright 2014, SLACK Incorporated.
Lu, Nan; Liu, Jinyu; Lou, Vivian W Q
The present study examined the unique set of correlates of each dimension of the burden experienced by family caregivers of frail elders with musculoskeletal (MSK) conditions in China, and the role of caregiver burden in between caregiver stressors and subjective well-being. The data was derived from a community sample of 494 elder-caregiver dyads from six urban districts of Shanghai (China). The elders were aged 75 or above, needed assistance in activities of daily living (ADL) and had MSK conditions. The family caregivers were these elders' primary caregivers and at the age of 18 or older. Path analysis was used to examine the proposed model. Care recipients' functional health, cognitive status and behavioral problems affected the multiple dimensions of caregiver burden differently. These three stressors also indirectly affected caregivers' subjective well-being through physical, social and developmental burden. The findings highlighted the mediator role of caregiver burden in between caregiver stressors and subjective well-being, which supported burden-as-mediator theory in understanding family caregiving for frail elders with musculoskeletal conditions in a Chinese context. The focus of intervention should be varied according to the levels of the primary stressors. Policy and intervention implications with regard to the ways of helping Chinese families care for their frail elders with MSK conditions were discussed. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.
Cintia Hitomi Yamashita
Full Text Available Cross-sectional study that used the Social Network Index and the genogram to assess the social network of 110 family caregivers of dependent patients attended by a Home Care Service in São Paulo, Brazil. Data were analyzed using the test U of Mann-Whitney, Kruskal-Wallis and Spearman correlation. Results were considered statistically significant when p<0,05. Few caregivers participated in activities outside the home and the average number of people they had a bond was 4,4 relatives and 3,6 friends. Caregivers who reported pain and those who had a partner had higher average number of relatives who to trust. The average number of friends was higher in the group that reported use of medication for depression. Total and per capita incomes correlated with the social network. It was found that family members are the primary caregiver’s social network.
Michael Gabriel Fetterolf
With biomedicine at the forefront of our culture's understanding of illness, true healing is often neglected. It has become common practice to place elderly persons with Alzheimer's disease in nursing homes or long-term care facilities that do not always regard the sufferers' well-being as a top priority. This article draws from familial caregiving roles as a basis for understanding personhood, which I take to be a bridge between the world of a caregiver and the world of an Alzheimer's suffer...
Spigelmyer, Pamela C; Hupcey, Judith E; Smith, Carol A; Loeb, Susan J; Kitko, Lisa
This research explored family caregivers' lived experiences of resistiveness to care when they provided care for people with dementia. The goal was to identify a general meaning of family caregivers' lived experiences to target potential areas for future nursing interventions to help family caregivers manage their caregiving role and provide a base for future research surrounding resistiveness to care. Descriptive phenomenology was used to provide descriptions of eight family caregivers who provided care for someone with dementia and experienced resistiveness to care. Family caregivers were recruited from Alzheimer's support groups from June to November 2014. Caregiver interviews were transcribed verbatim and analyzed using scientific phenomenology to identify essential constituents of the experience. The identified general meaning structure contained five essential constituents. These included self-questioning of abilities; signal for increased future caregiver responsibilities; changed perception of personal self; unexpected emotional responses; and seeing a changed person, not the disease. Study findings represent family caregivers' lived perceptions of resistiveness to care, which are different from current research findings regarding nurses' perceptions of resistiveness to care. The identified meaning structure indicates focus areas for future research and for nursing interventions to help family caregivers manage their distress when experiencing resistiveness to care. Identification of the meaning caregivers ascribe to their lived experience of resistiveness to care (five essential constituents) provides nurses with opportunities to help family caregivers (coproviders of care) holistically. Supporting caregivers in their caregiving role can decrease caregiver distress when resistiveness to care occurs. © 2017 Sigma Theta Tau International.
Bademli, Kerime; Duman, Zekiye Çetinkaya
"Family to Family Support Program" is a significant intervention program to assist families by informing them about treatment procedures and coping strategies, increasing their functionality, helping them to overcome the challenges of the disease. This study was particularly designed to investigate the emotions, thoughts, and experiences of caregivers of schizophrenia patients who participated in "Family to Family Support Program." The study was conducted with one of the qualitative research methods, phenomenological method. The study sample included caregivers who care for schizophrenia patients and participated in the "Family to Family Support Program". Twenty caregivers were included in the sample. The study was carried out in İzmir Schizophrenia Support Association. The study data were collected with four open ended questions. The average age of the participants was 56,77 ± 72,89, 10 male caregivers and 10 female caregivers, 9 caregivers were fathers, 6 caregivers were mothers, and 5 of them were siblings. The thematic analysis indicated that the emotions, thoughts and experiences of caregivers can be categorized in four groups: "I learned to deal with my problems", "I am conscious in my interaction with the patient and I know and I am not alone", "I feel much better", and "Schizophrenia is not the end of the road, knowledge sorts things out." Caregivers who participated in "Family to Family Support Program" expressed their satisfaction that they were benefited from the program, their coping skills were improved, they experienced less challenges when providing care, they understood the disease better, and it felt comfortable. Copyright © 2015 Elsevier Inc. All rights reserved.
Full Text Available The purpose of this study was to compare components of cardiometabolic risk and health behaviors of 20 family caregivers of allogeneic hematopoietic stem cell transplant patients to those of age, gender, and race/ethnicity-matched controls. A prospective, repeated measures design was used to compare cardiometabolic risk and health behaviors in caregivers and controls at three time-points: pre-transplantation, discharge, and six weeks post-discharge. Measures included components of metabolic syndrome, Reynolds Risk Score, NMR serum lipoprotein particle analyses, and the Health-Promoting Lifestyle Profile II (HPLP-II. Mixed-model repeated measure analyses were used. There were no between or within group differences in LDL cholesterol, HDL cholesterol, and triglycerides. There was a significant interaction effect between time and role in large VLDL concentration (VLDL-P (F (2, 76 = 4.36, p = .016, with the trajectory of large VLDL-P increasing over time in caregivers while remaining stable in controls. Within caregivers, VLDL particle size (VLDL-Z was significantly larger at time-point three compared to time-points one (p = .015 and two (p = .048, and VLDL-Z was significantly larger in caregivers than in controls at time point three (p = .012. HPLP-II scores were lower in caregivers than controls at all time-points (p < .01. These findings suggest that caregiving may have a bigger impact on triglycerides than on other lipids, and it is through this pathway that caregivers may be at increased cardiometabolic risk. More sensitive measurement methods, such as NMR lipoprotein particle analyses, may be able to detect early changes in cardiometabolic risk.
Nov 13, 2008 ... orphanages, most of Africa's orphans have been absorbed into extended family networks. ... It is recommended that health care workers, including social workers and home-based caregivers be trained on available social support ..... and negative emotional states such as helplessness, decreasing self-.
Mehrotra, Kanika; Nautiyal, Snigdha; Raguram, Ahalya
The present study was undertaken to examine the current level of mental health literacy in family caregivers and to compare the changes over a 23-year period between 1993 and 2016. The current sample consisted of 60 family caregivers of patients with major mental illness from the in-patient and out-patient departments of NIMHANS, assessed on the Orientation towards Mental Illness Scale (OMI). This was compared with data of 80 family caregivers from previous study done in 1993. Family caregivers in the current study showed a significant positive trend on comparison with the previous study. However, area of abnormal behaviour shows a worsening of negative attitudes. Hopelessness and hypo-functioning, relating to the factor of after-effects of mental illness show no significant difference. While knowledge about mental illnesses can be improved by providing information, this does not automatically translate to integration of the mentally ill in society. Current initiatives need to be matched with specific and sustained efforts to reduce stigma associated with mental illness which have persisted unchanged. Copyright © 2018 Elsevier B.V. All rights reserved.
Objective: To determine the burden of mental illness in the family/caregiver and the community. Design: A cross-sectional descriptive study. Setting: Rehabilitation centres, community day centres, resettlement villages and in the community in three provinces (Harare, Bulawayo and Masvingo), Zimbabwe. Subjects: A sample ...
Haley, William E.
Conducted longitudinal follow-up to previously published experimental study of effectiveness of group intervention for dementia family caregivers. Found methodological and clinical issues relevant to future studies included issues of differential attrition from treatment, selection of participants,and need for measures appropriate to long-term…
Michael Gabriel Fetterolf
Full Text Available With biomedicine at the forefront of our culture's understanding of illness, true healing is often neglected. It has become common practice to place elderly persons with Alzheimer's disease in nursing homes or long-term care facilities that do not always regard the sufferers' well-being as a top priority. This article draws from familial caregiving roles as a basis for understanding personhood, which I take to be a bridge between the world of a caregiver and the world of an Alzheimer's sufferer. Furthermore, through the modeling of professional caregiving strategies, I show how one might form meaningful relationships in long-term care facilities, and likewise provide the aging and afflicted person with forms of healing.
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Mitrani, Victoria B.; Feaster, Daniel J.; McCabe, Brian E.; Czaja, Sara J.; Szapocznik, Jose
Purpose: This study adapted the Structural Family Systems Ratings (SFSR), an observational measure of family interactions, for dementia caregivers. This article presents the development of the SFSR-Dementia Caregiver adaptation (SFSR-DC) and examines relationships between specific family-interaction patterns and caregiver distress. Design and…
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Kurasawa, Shigeki; Yoshimasu, Kouichi; Washio, Masakazu; Fukumoto, Jin; Takemura, Shigeki; Yokoi, Katsushi; Arai, Yumiko; Miyashita, Kazuhisa
The purpose of this study was to determine the factors related to changes in the burden of caregivers who look after the elderly at home, as well as factors related to the institutionalization of the elderly who require care. The types of care services associated with reducing caregivers' burden and continuing in-home care were also studied. The study subjects were adults aged ≥65 years who used the services of in-home care management centres located in Osaka Prefecture, Japan, and their caregivers. This 2-year longitudinal study began in October 2007, with a total of three surveys undertaken once a year. The survey methods included self-administered questionnaires and the review of clinical records. Dementia and its accompanying behavioural disturbances were found to be significantly related to the increased burden of caregivers and the institutionalization of those requiring care. A significantly higher proportion of caregivers with an increasing burden or those who maintained a high level of burden used day care services compared to those in the other groups. Preventive intervention against dementia and its accompanying behavioural disturbances should be considered in the day care service to reduce caregivers' burden and to decrease institutionalization.
Carter, Patricia A
Depression is a normal response when a family member receives a diagnosis of cancer. However, this response may be exacerbated by other factors such as chronic sleep loss that are amenable to intervention. This pilot study described caregiver sleep and depression patterns over time and explored the feasibility of data collection methods and instruments. The stress and coping framework of Lazarus and Folkman guided this study. A descriptive correlational design was used for this 10-week pilot study. Ten adult family caregivers of patients with cancer were recruited from outpatient oncology clinics. Sleep quality and depression were measured weekly. Actigraphs were worn for 72 hours during weeks 1, 5, and 10. Individual sleep quality and depression scores were generated. Actigraph latency, duration, and efficiency scores were generated. Actigraph and sleep quality scores were compared. Individual caregiver sleep and depression plots show large variance over time. Discrepancies were noted between Actigraph and sleep quality latency, duration, and efficiency scores. Sleep and depressive symptoms fluctuate widely over time. Therefore, accurate assessment and treatment of caregiver problems require repeated assessments. Self-reports of sleep and depression appear to underestimate problems and must be evaluated carefully within this context.
Signe, Andrén; Elmståhl, Sölve
A number of different intervention programmes have been described in the literature for caregivers of people with dementia, but the nature of intervention has varied widely. The aim of the present study was to evaluate the efficacy of psychosocial intervention on family caregiver's level of burden and satisfaction, and possible influence of the caregiver's relationship and health and the patient's severity of the disease on the effects of intervention. All persons, 70 years and older, from two districts of a municipality (2721 individuals) who were in receipt of any form of social services were invited to participate in a screening of cognitive decline, and 1656 home visits were made. Those with symptoms of cognitive decline, and having a family caregiver, were invited for a further medical examination. Data were analysed from 308 family caregivers: 153 caregivers who underwent intervention and 155 control caregivers who did not. Repeated measures were carried out 6 and 12 months later. Outcomes were measured using instruments that had been tested for reliability and validity, and all patients were diagnosed according to DSM-IV dementia criteria. Caregivers who underwent the psychosocial intervention (5-week programme and 3-month conversation group) reported significantly lower strain and disappointment after 6 months, and this trend remained after 12 months. Satisfaction, measured in terms of purpose, increased in the intervention group and decreased in the control group. The best effect on caregivers in the intervention group was found early in the progression of dementia and in caregivers with impaired health. These findings emphasize the importance of identifying family caregivers early in the caring process to optimize well-being. This study demonstrates that psychosocial intervention with a clearly defined aim that includes giving information and having a conversation group have significant, positive effects on burden and satisfaction for caregivers of people
The purpose of the study was to investigate the over-time effects of physical, psychological and social resources on the incidence of depression in family caregivers of the disabled elderly. Data were collected twice at a one-year interval from 1,141 primary caregivers of a disabled older person in an urban area of Japan using a self-reported questionnaire survey. The questionnaire included physical health as an indicator of physical resources, caregiving satisfaction and intention to care as...
Yajima, Yuki; Tsutsui, Takako; Nakajima, Kazuo; Li, Hui-Ying; Takigawa, Tomoko; Wang, Da-Hong; Ogino, Keiki
The purpose of the study was to investigate the over-time effects of physical, psychological and social resources on the incidence of depression in family caregivers of the disabled elderly. Data were collected twice at a one-year interval from 1,141 primary caregivers of a disabled older person in an urban area of Japan using a self-reported questionnaire survey. The questionnaire included physical health as an indicator of physical resources, caregiving satisfaction and intention to care as...
Coogle, Constance L.
Advisors from universities, human services agencies, and Alzheimer's Association identified the educational needs of family caregivers; results were used to prepare training materials. Family caregivers who were trained, mostly African American and rural (n=106), increased knowledge of the disease and caregiving. Economic barriers to participation…
Thaís Oliveira da Silva
Full Text Available The Alzheimer's disease is characterized by being a degenerative disease that affects the brain, promoting progressive impairment of mental function. The disease progresses to a stage of total dependence, which requires the assistance of health professionals and family caregivers. This study aimed to describe the relationship between the patient and family caregiver; and, to understand how the family caregivers experiences the care. The methodology adopted was the oral history with the technique of semi-structured interview and content analysis. The themes were: Family Caregivers and patients: initial experience; The discovery of the disease: how it happens; How the family caregiver experiences the disease. The experience of care for patients of Alzheimer's disease requires changes in the family dynamics of caregivers, which require knowledge about the disease, symptoms and evolution. These changes generate anxiety and despair in family caregivers and adaptation to exercise the care in different situations that are emerging with the disease.
Thaís de Miranda Fortuna
Full Text Available Spirituality comes as a support in fighting the disease by the family caregiver who understands the necessity of Alzheimer carrier to have someone to assist you in almost all of your daily tasks. Considering spirituality as part of the concept of health and its impacts on living a chronic disease, this article aims to describe the importance of spirituality as an influence factor in monitoring the patient with Alzheimer. This is a cross-sectional study of bibliographical research, where seven articles were analyzed in their entirety. It is difficult to measure the real impact of spirituality on health, but it appears as a facilitator in the condition acceptance process and supporting family caregivers, which is one of the participants over burdened by the disease and its implications, and quality of care provided.
Hu, Xiaolin; Dolansky, Mary A; Hu, Xiuying; Zhang, Fengying; Qu, Moying
We investigated the status of caregiver burden and identified the factors related to caregiver burden among family caregivers of patients with heart failure in southwest China. A cross-sectional descriptive design with a convenience sample was adopted. Patient and family caregiver dyads (n = 226) in four hospitals in Chengdu, China were recruited from June 2013 to July 2014. The instruments used in this study included the Social Support Rating Scale, the Zarit Burden Interview, and the General Self-Efficacy Scale. Multivariate analysis was used to identify the factors associated with caregiver burden. Forty-four percent of the variance of the caregiver burden was explained by the payment type for treatment, monthly family income, relationship to the patient, caregivers' self-efficacy, and social support. The caregiver burden in southwest China was higher than studies conducted in developed areas. Specific to southwest China, the financial burden and insufficient resources are the main factors associated with caregiver burden. The results suggest that self-efficacy and social support in underdeveloped areas are potential areas for future intervention. © 2016 John Wiley & Sons Australia, Ltd.
Unwin, Gemma; Deb, Shoumitro
The purpose of this study was to investigate the experience of family caregivers caring for adults with intellectual disabilities (ID) who display aggressive behavior in terms of associations with caregiver burden and uplift. The family caregivers of 44 people with ID and aggressive behavior were interviewed using a suite of questionnaires and…
Holm, Maja; Henriksson, Anette; Carlander, Ida; Wengström, Yvonne; Öhlen, Joakim
Family caregivers have been given increasing importance in palliative home care and face a great responsibility as caregivers for patients suffering from incurable illness. Preparedness for caregiving has been found to moderate negative effects and promote well-being in family caregivers. The aim of our study was to explore family caregivers' own experiences of preparing for caregiving in specialized palliative home care. An interpretive descriptive design was chosen. A strategic sampling method was applied with a focus on participants who rated their preparedness as high and low using a structured instrument. Qualitative interviews were completed with 12 family caregivers. They were analyzed using a constant-comparative technique. Family caregivers described their experience of preparing for caregiving as an ongoing process, rather than something done in advance. The process was illustrated through three subprocesses: "awaring" (realizing the seriousness of the situation), "adjusting" (managing a challenging situation), and "anticipating" (planning for the inevitable loss). Knowledge about the process of preparedness for caregiving and its subprocesses could be valuable to healthcare professionals, given the positive effects shown by preparedness in this context. Being able to recognize the different subprocesses of preparedness for caregiving could provide healthcare professionals with opportunities to support family caregivers in managing them. Preparedness for caregiving should be seen as a process to be supported and promoted continuously in palliative home care, not just at enrollment.
Xie, Hui; Cheng, Cheng; Tao, Yisheng; Zhang, Jie; Robert, Delprino; Jia, Jihui; Su, Yonggang
Inadequate studies have been conducted in China to examine quality of life in family caregivers. Quality of life in family caregivers for elderly people with chronic diseases was evaluated, and the demographic and characteristic factors of both elderly people and their caregivers were explored. The 36-Item Short Form Health Survey (SF-36) was used to assess health-related quality of life in 407 family caregivers caring for elderly people with chronic diseases in six communities on the Mainland China. The explanatory variables included family caregivers' demographic and other caregiving variables related to eldercare. Descriptive statistics and multiple linear regression analysis were used in the data analysis, performed via SPSS 17.0. Mean SF-36 and physical and mental component scores were 66.14 ± 17.50, 70.06 ± 16.49, and 62.22 ± 18.51, respectively. The scores of caregivers' physical function and bodily pain were significantly higher, while the scores of caregivers' role limitations due to physical problems, general health, vitality, social function, mental health and role limitations due to emotional problems were significantly lower. Caregivers' ages, comorbidity, the perceived effects of caregiving on caregivers' social lives and elderly individuals' ages, marital status and Activities of Daily Living scores were significantly associated with the physical component score. In addition, caregivers' age, the affordability of the elderly person's healthcare expenses, the perceived effects of caregiving on caregivers' social lives, and elderly people's marital status and ADL scores were significantly associated with the mental component score. Family caregivers for elderly people with chronic diseases showed poorer mental and better physical well-being. Factors of both elderly people and their caregivers impact the caregivers' quality of life. These findings highlight the importance of addressing mental health of family caregivers, and of providing
Coleman, Eric A
The objective of this Perspective was to provide guidance to hospitalists and hospital clinical leadership on how to implement the Caregiver Advise Record and Enable (CARE) Act, which has been passed into law in 30 US states and territories. Specifically, the objective is 3-fold: (1) increase awareness among hospitalists and encourage them to begin to prepare for implementation, (2) explore the impetus for this legislation, and (3) provide a list of suggested resources geared to both family caregivers and healthcare professionals that may be helpful in preparation for implementing the CARE Act. Journal of Hospital Medicine 2015;11:883-885. © 2015 Society of Hospital Medicine. © 2016 Society of Hospital Medicine.
Mahoney, Rachel; Regan, Ciaran; Katona, Cornelius; Livingston, Gill
There are high rates of stress, distress, and psychological illness in family caregivers of people with dementia. Female caregivers and those caring for people with neuropsychiatric symptoms are particularly at risk. The authors report on the prevalence of anxiety and depression in a sample of family caregivers of people with Alzheimer disease (AD) and compare the characteristics of those who did or did not have those conditions. A group of 153 people with AD and their caregivers were interviewed as part of a larger study of AD. In all, 23.5% of caregivers scored at or above caseness level for anxiety, and 10.5%, at levels for depression. Care-recipient (CR) activities of daily living (ADL) impairment, being a caregiver living with the CR, being a female caregiver, reporting a poorer quality of relationship with the CR, and caregivers reporting their health as being poor all predicted anxiety disorder. CR irritability, caregivers reporting poor health, and a poorer quality of relationship with the CR predicted depression. Clinicians should be aware of the high rates of anxiety as well as depressive symptoms in family caregivers of people with AD, especially in female caregivers. CRs and Caregivers' impaired physical health put them at risk for psychological morbidity and should be treated energetically. A poor-quality relationship between the caregiver and the CR predicts both caregiver depression and anxiety. Caregivers living with the CR are much more likely to be anxious than depressed.
Akin, Semiha; Durna, Zehra
Perform a comparative descriptive study that aims to describe the symptom severity of patients receiving chemotherapy and to compare patient self-reports of symptom severity with inferences made by nurses and family caregivers. The study was performed in the chemotherapy unit of a university hospital. The study was conducted on 119 patients undergoing chemotherapy that had a family caregiver and a nurse (n = 7) primarily responsible for their care. Symptom assessments were completed using the Edmonton Symptom Assessment System (ESAS). Symptoms were rated independently by the patient, caregiver and nurse. The patients reported severe tiredness, loss of well-being, anxiety, drowsiness, appetite changes, depression, pain and nausea. The patients and caregivers showed a strong agreement of the patients' symptoms (P nurses showed poor to fair agreement of the symptoms of pain, tiredness, nausea, depression, drowsiness, appetite, loss of well-being, skin and nail changes, mouth sores, and hand numbness (P pain, depression, anxiety, drowsiness and loss of well-being were lower than those of the caregivers. The patients' mean scores of symptoms such as tiredness, shortness of breath, skin and nail changes and mouth sores were higher than scores of nurses (P cancer will help clinicians to develop strategies or approaches to improve the caregiver symptom assessment. Copyright © 2012 Elsevier Ltd. All rights reserved.
Conclusions: The more severe pathogenic condition of the patient, the heavier the psychological pressure is on their family member caregivers. Medical staff should therefore pay close attention to the psychological health of family caregivers of TBI patients, especially family caregivers of critical cases. Interventions should be accordingly designed and conducted to meet the needs of family caregivers.
Letice Ericeira Valente
Full Text Available Caring for a demented family member has been associated with burden. Studies concerning health self-perception of family caregivers are still scarce. OBJECTIVE: To investigate caregivers perceived health and to look into relationships with patients and caregivers' sociodemographic and clinical data. METHOD: Dyads of dementia outpatients and family caregivers (n=137 were assessed with Mini Mental State Examination, Functional Activities Questionnaire, Neuropsychiatric Inventory and Clinical Dementia Rating. Caregivers answered Sociodemographic Questionnaire, Beck Depression and Anxiety Inventories, Zarit Burden Interview and Maslach Burnout Inventory. RESULTS: Caregivers poor perceived health was associated with emotional exhaustion, burden, depression and anxiety. Logistic regression analyses revealed caregivers' age, anxiety and physical problem as the main predictors of health self-perception. CONCLUSION: Aged family caregivers with anxiety who also report physical problem characterize a group at risk for poor self-perceived health. Evaluation of health self-perception may be useful for designing interventions to improve anxiety and physical health.
Mehta, Anita; Cohen, S Robin; Ezer, Helene; Carnevale, Franco A; Ducharme, Francine
to describe the types of pain patients in palliative care at home experience and how family caregivers assess them and intervene. qualitative using grounded theory. family caregivers' homes. 24 family caregivers of patients with advanced cancer receiving palliative care at home. semistructured interviews and field notes. Data analysis used Strauss and Corbin's recommendations for open, axial, and selective coding. pain, pain management, family caregivers, palliative care, and home care. caregivers assessed different types of pain and, therefore, were experimenting with different types of interventions. Not all family caregivers were able to distinguish between the different pains afflicting patients, and, consequently, were not selecting the most appropriate interventions. This often led to poorly managed pain and frustrated family caregivers. The accurate assessment of the types of pain the patient is experiencing, coupled with the most appropriate intervention for pain control, is critical for optimal pain relief as well as supporting the confidence and feelings of family caregivers who are undertaking the complex process of cancer pain management. nurses involved with patients receiving palliative care and their family caregivers should be aware of all types of pain experienced by the patient and how caregivers are managing the pain. Nurses should be knowledgeable about different pain relief interventions to help family caregivers obtain accurate information, understand their options, and administer these interventions safely and effectively.
Bull, Margaret J
The negative health consequences of caring for an older adult family member with dementia are well documented. However, not all family caregivers experience these negative health consequences. The purposes of this study were to describe strategies family caregivers use to help them continue to provide care for an older family member with dementia despite challenges and describe these family caregivers' resilience and psychological distress. A mixed methods design was used with a narrative approach dominant and standardized scales for resilience and psychological distress used to enhance the description of the sample. Data were collected through telephone interviews with 18 family caregivers residing in an urban area. The findings indicate that family caregivers used four strategies to sustain the self: drawing on past life experiences, nourishing the self, relying on spirituality, and seeking information about dementia. Understanding strategies used by family caregivers to sustain themselves is essential for providing holistic nursing care and developing effective interventions.
Full Text Available Family members of patients are often considered informal primary caregivers, particularly for those living with chronic diseases including multiple sclerosis (MS. Caregivers often report increased burden and stress when caring for individuals with chronic care needs. It is important to explore the caregiver experience in the context of MS. The aim of this study is to describe the experiences of family caregivers caring for individuals with Multiple Sclerosis. A purposive sampling method was utilized. A total of eighteen family member caregivers of patients with multiple sclerosis participated in this study. Data were collected through semi-structured and in-depth interviews conducted in the multiple sclerosis society and hospitals of Tabriz in Iran. Data were analyzed using qualitative content analysis assisted by MAXQDA 10 software. Three main categories emerged from interviews about their caregiving experiences. These include1 emotional reactions; 2 caregiver needs; and 3 caregiver expectations. Results of this study demonstrate that family caregivers of individuals with MS show different emotional reactions and have complex needs and expectations from other ‘non-caregiver relatives and society. This study highlights the psychosocial, physical and economic needs of caregivers of individuals with MS and enhances social understanding of this impact of the condition. This may improve the support clinicians provide to family caregivers. There is need to develop targeted interventions that reduce caregiver burden for those caring for individuals with MS.
Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda
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.
This study aimed to examine the relationships between caregiving stress, depression, and self-esteem of family caregivers of an adult person with a disability and to identify their effects on their caregiving burden. The study was performed with 108 care providers of adult people with a disability who visited hospital rehabilitation centers. Caregiving stress showed a significant positive correlation with depression and with economic and psychological stress, and it showed a significant negative correlation with self-esteem. When the care provider was aged, female, and without a job and the caregiving cost and time were higher, the caregiving stress was high. When the care provider was female and had a lower income, the depression index was high. When the person with a disability was male and in the forties and the level of disability was higher, the caregiving stress was high. When the disability was related to spinal cord damage, the care provider's depression index was the highest. To reduce caregiving stress and depression in the family caregivers and to improve their self-esteem, continuous support and help from specialists are necessary. Additionally, a variety of intervention programs need to be designed to motivate them to participate regularly at the community level. PMID:29114184
Liu, Yin; Kim, Kyungmin; Zarit, Steven H
The study examines family caregivers' health changes over 1 year on four health dimensions and explores the association of differential health trajectories with adult day service (ADS) use and caregiving transitions. The participants were 153 primary caregivers of individuals with dementia (IWDs) who provided information on care situations and their own health at baseline, 6-month, and 12-month interviews. Caregivers showed increasing functional limitations and decreasing bodily pain over time, whereas role limitation and general health perception remained stable. Furthermore, caregivers' trajectories of functional limitation were associated with their extent of ADS use at baseline and their relatives' placement. Health is multidimensional; all dimensions of caregiver health do not change in a uniform manner. The findings underscore the importance of the association of caregiving transitions and caregiver health and the potential health benefits of ADS use for family caregivers. © The Author(s) 2014.
Park, Chang-Hae; Shin, Dong Wook; Choi, Jin Young; Kang, Jina; Baek, Young Ji; Mo, Ha Na; Lee, Mee-Sook; Park, Seon-Ju; Park, Sang Min; Park, Sohee
Caregivers may experience positive or negative feelings about their role. The study investigated the determinants of the burden and positivity of family caregivers of Korean terminal cancer patients. A multicenter cross-sectional survey was conducted with 139 family caregivers. Determinants of caregiver's burden and positivity were assessed by the Caregiver Reaction Assessment Scale and by three questions based on a previous study, respectively. Two separate hierarchical multiple regression models were used. Each domain of the caregiver's burden and positivity was explained by different factors, with the total explained variance ranging between 14.4-33.6% and 2.6-18.3%, respectively. Caregivers who were unmarried, less educated, and/or had low incomes were more likely to be negatively affected, while those who shared caregiving responsibilities were less prone to negative consequences. Caregivers who were male, religious practitioners, and who perceived a higher burden of schedule disruptions were more likely to have a positive perception of their role, while those who perceived a lack of family support were less likely. Our results highlight the importance of sharing the caregiving burden with the other family members. Organizing a family meeting can provide an opportunity for other family members to acknowledge the feelings and reactions of the primary caregivers, and can prompt the sharing of caregiving responsibilities. Copyright © 2010 John Wiley & Sons, Ltd.
Roberts, Emily; Struckmeyer, Kristopher M.
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
Tremont, Geoffrey; Davis, Jennifer D; Ott, Brian R; Galioto, Rachel; Crook, Cara; Papandonatos, George D; Fortinsky, Richard H; Gozalo, Pedro; Bishop, Duane S
To examine the effects of a telephone-delivered intervention, Family Intervention: Telephone Tracking-Caregiver (FITT-C), on community support and healthcare use by dementia caregivers. Randomized, controlled trial. Academic medical center. Dyads (n = 250) of distressed informal dementia caregivers and care recipients. Caregivers were randomly assigned to receive the FITT-C (n = 133) or telephone support (TS; n = 117). Both groups received 16 telephone contacts from a master's-level therapist over 6 months. The FITT-C intervention provided psychoeducation, problem solving, and other directive approaches based on assessment of critical areas (e.g., mood, behavior, family functioning, social support). TS provided supportive therapeutic strategies. Outcome variables were caregiver report of community support service use, number of visits to the emergency department (ED) for caregivers and care recipients, and hospital stays for caregivers during the interventions. Intervention groups did not differ in demographic characteristics, use of support services, or use of healthcare resources at baseline. Caregivers who received the FITT-C used community support services at end of treatment significantly more than those receiving TS (P = .02). FITT-C caregivers had a significantly lower rate of ED visits (rate difference 9.5%, P = .048) and hospital stays (rate difference 11.4%, P = .01) over the 6-month course of the intervention than TS caregivers. Care recipient use of community or medical resources did not differ according to group. An entirely telephone-delivered intervention was effective in increasing caregiver engagement in community resources and reducing caregiver use of hospital-based healthcare resources. Results highlight the potential effect of FITT-C on healthcare use. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.
Tremont, Geoffrey; Davis, Jennifer D.; Ott, Brian R.; Galioto, Rachel; Crook, Cara; Papandonatos, George D.; Fortinsky, Richard H.; Gozalo, Pedro; Bishop, Duane S.
OBJECTIVES To examine the effects of a telephone-delivered intervention, Family Intervention: Telephone Tracking—Caregiver (FITT-C), on community support and healthcare use by dementia caregivers. DESIGN Randomized, controlled trial. SETTING Academic medical center. PARTICIPANTS Dyads (n = 250) of distressed informal dementia caregivers and care recipients. INTERVENTION Caregivers were randomly assigned to receive the FITT-C (n = 133) or telephone support (TS; n = 117). Both groups received 16 telephone contacts from a master’s-level therapist over 6 months. The FITT-C intervention provided psychoeducation, problem solving, and other directive approaches based on assessment of critical areas (e.g., mood, behavior, family functioning, social support). TS provided supportive therapeutic strategies. MEASUREMENTS Outcome variables were caregiver report of community support service use, number of visits to the emergency department (ED) for caregivers and care recipients, and hospital stays for caregivers during the interventions. RESULTS Intervention groups did not differ in demographic characteristics, use of support services, or use of healthcare resources at baseline. Caregivers who received the FITT-C used community support services at end of treatment significantly more than those receiving TS (P = .02). FITT-C caregivers had a significantly lower rate of ED visits (rate difference 9.5%, P = .048) and hospital stays (rate difference 11.4%, P = .01) over the 6-month course of the intervention than TS caregivers. Care recipient use of community or medical resources did not differ according to group. CONCLUSION An entirely telephone-delivered intervention was effective in increasing caregiver engagement in community resources and reducing caregiver use of hospital-based healthcare resources. Results highlight the potential effect of FITT-C on healthcare use. PMID:28008609
Patrícia Paes Araujo Fialho
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.
Shlafer, Rebecca J; Poehlmann, Julie
This longitudinal, mixed method study focused on 57 families of children who participated in a mentoring program for children of incarcerated parents. Children ranged in age from 4 to 15 years. Monthly interviews were conducted with children, caregivers, and mentors during the first six months of program participation, and questionnaires were administered at intake and six months to assess caregiver-child and incarcerated parent-child relationships, contact with incarcerated parents, and children's behavior problems. Although some children viewed their incarcerated parents as positive attachment figures, other children reported negative feelings toward or no relationship with incarcerated parents. In addition, our assessments of children nine years old and older revealed that having no contact with the incarcerated parent was associated with children reporting more feelings of alienation toward that parent compared to children who had contact. Children's behavior problems were a primary concern, often occurring in a relational context or in reaction to social stigma associated with parental imprisonment.
Noureldin, Marwa; Murawski, Matthew M; Mason, Holly L; Hyner, Gerald C; Plake, Kimberly S
1) To explore the association between family caregivers' involvement in managing care recipients' medications and their information-seeking behavior related to caregiving; and 2) to examine the sources used by caregivers when seeking information. A retrospective analysis of cross-sectional data from 2 national studies, the 2011 National Health and Aging Trends Study (NHATS) and its supplement, the National Study of Caregiving (NSOC), was conducted. A nationally representative sample of community-dwelling adults (≥65 years of age) completed NHATS interviews, and a sample of their family caregivers participated in NSOC. Caregiver involvement in medication management was assessed with the use of 2 items asking caregivers if they helped keep track of care recipients' medications or helped with injecting medications. Information seeking was assessed with the use of an item asking caregivers if they ever looked for caregiving-related information. Out of 1367 caregivers interviewed, 54% reported helping to keep track of care recipients' medications and 8.7% assisting with injecting medications. Approximately 10.2% (n = 149) of caregivers reported seeking information to help them care for their care recipients. Caregivers sought information primarily on their own either through online resources or asking friends or relatives (73.3%). Sixty-four percent also sought information from medical providers or social workers. Adult children of caregivers were more likely to seek information for their older adult parents, based on bivariate analysis (P seeking information to help them to provide care for their care recipients. Caregivers helping with injecting medications were less likely to seek information (odds ratio 0.32, 95% CI 0.14 to 0.76). Specific caregiver responsibilities, such as assisting with medication management activities, are associated with caregivers' information-seeking behavior related to care recipients' health. Health care providers, including pharmacists
Liu, Yin; Granger, Douglas A.; Kim, Kyungmin; Klein, Laura C.; Almeida, David M.; Zarit, Steven H.
Objective The study examined diurnal regulation of salivary alpha-amylase (sAA) in association with daily stressors, adult day services (ADS) use, and other caregiving characteristics. Methods A sample of 165 family caregivers of individuals with dementia (IWD) completed an 8-day diary study. Caregivers provided 5 saliva samples across the 8 days. On some days, caregivers provided all or most of the care. On other days, their relative attended ADS for part of the day. A 3-level unconditional linear spline model was fit to describe the typical sAA diurnal rhythms. Predictors were then added to the unconditional model to test the hypotheses on ADS use and daily stressors. Results Daily ADS use did not have an effect on diurnal sAA regulation. However, controlling for daily ADS use, greater ADS use over the 8 days was associated with a more prominent rise between 30 minutes after wake-up and before lunch, and a more prominent decline between before lunch and late afternoon. Fewer ADS days were associated with a more flattened sAA diurnal rhythm. Additionally, greater daily care-related stressor exposures had a within-person association with lower sAA levels in the late afternoon. Care-related stressor exposures had significant within- and between-person associations with sAA diurnal slopes. Furthermore, daily positive experiences had a significant between-person association with sAA diurnal slopes. Conclusions Caring for a disabled family member may heighten the vulnerability to potential physiological conditions. Respite from care stressors from ADS use may have some biobehavioral benefits on sAA regulations. PMID:27786517
Shyu, Yea-Ing Lotus
This descriptive, correlational study of family caregivers (N=125) tested a conceptual framework for family caregiving to frail elders in Taiwan, using the concept of "finding a balance point" derived from a previous qualitative study. It was hypothesized that caregivers who were better able to find a balance point among competing needs would provide better-quality care to frail elders, which would lead to more positive caregiver and family outcomes. After controlling for the influence of caregiving characteristics and caregiving factors, finding a balance point significantly explained 7% of the variance in overall caregiving consequences. The findings of this study add a new perspective to the caregiving process in Taiwan. Copyright 2002 Wiley Periodicals, Inc.
Chiang, Li-Chi; Chen, Wan-Chou; Dai, Yu-Tzu; Ho, Yi-Lwun
Telehealth care was developed to provide home-based monitoring and support for patients with chronic disease. The positive effects on physical outcome have been reported; however, more evidence is required concerning the effects on family caregivers and family function for heart failure patients transitioning from the hospital to home. To evaluate the effectiveness of nursing-led transitional care combining discharge plans and telehealth care on family caregiver burden, stress mastery and family function in family caregivers of heart failure patients compared to those receiving traditional discharge planning only. This is a quasi-experimental study design. Sixty-three patients with heart failure were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre from May to October 2010. Three families refused to participate in data collection. Thirty families who chose telehealth care after discharge from the hospital to home comprised the experimental group; the others families receiving discharge planning only comprised the comparison group. Telenursing specialist provided the necessary family nursing interventions by 24-h remote monitoring of patients' health condition and counselling by telephone, helping the family caregivers successfully transition from hospital to home. Data on caregiver burden, stress mastery and family function were collected before discharge from the hospital and one month later at home. Effects of group, time, and group×time interaction were analysed using Mixed Model in SPSS (17.0). Family caregivers in both groups had significantly lower burden, higher stress mastery, and better family function at one-month follow-up compared to before discharge. The total score of caregiver burden, stress mastery and family function was significantly improved for the family caregivers in the experimental group compared to the comparison group at posttest. Two subscales of family function
Full Text Available Objective To assess the effectiveness of Problem-Solving Therapy (PST on family caregivers through the use of scales to measure anxiety, depression and emotional distress; and to explore facilitating factors and obstacles for its use based on the narrative of nurses. Method A clinical trial and an exploratory focus group with the use of mixed analysis methodology. The study was conducted in a primary health care center in Tarragona, Spain, and the sample consisted of 122 family caregivers who were included in the home care service, and 10 nurses who participated in the intervention group. Family caregivers with evident symptoms of anxiety, depression and emotional distress received PST in the intervention group. The intervention group also consisted of a discussion with eight nurses, which was transcribed and submitted to content analysis. Conclusion Problem-Solving Therapy proved to be effective in reducing perceived anxiety, depression and emotional distress. We identified its strong points and obstacles as described by nurses.
Full Text Available Objective To assess the effectiveness of Problem-Solving Therapy (PST on family caregivers through the use of scales to measure anxiety, depression and emotional distress; and to explore facilitating factors and obstacles for its use based on the narrative of nurses. Method A clinical trial and an exploratory focus group with the use of mixed analysis methodology. The study was conducted in a primary health care center in Tarragona, Spain, and the sample consisted of 122 family caregivers who were included in the home care service, and 10 nurses who participated in the intervention group. Family caregivers with evident symptoms of anxiety, depression and emotional distress received PST in the intervention group. The intervention group also consisted of a discussion with eight nurses, which was transcribed and submitted to content analysis. Conclusion Problem-Solving Therapy proved to be effective in reducing perceived anxiety, depression and emotional distress. We identified its strong points and obstacles as described by nurses.
Doyle, Sarah T; Perrin, Paul B; Nicholls, Elizabeth; Olivera, Silvia Leonor; Quintero, Lorena Medina; Otálvaro, Nadezda Yulieth Méndez; Arango-Lasprilla, Juan Carlos
This study examined the connections between family dynamics and the mental health of caregivers of youth with spinal cord injuries/disorders (SCI/D) caregivers from Colombia, South America. It was hypothesized that lower family functioning would be associated with poorer caregiver mental health. A cross-sectional study of self-report data collected from caregivers through the Hospital Universatario Hernando Moncaleano Perdomo in Neiva, Colombia. Thirty caregivers of children with SCI/D from Nevia, Colombia who were a primary caregiver for ≥3 months, providing care for an individual who was ≥6 months post-injury/diagnosis, familiar with the patient's history, and without neurological or psychiatric conditions. Caregivers' average age was 41.30 years (SD = 10.98), and 90% were female. Caregivers completed Spanish versions of instruments assessing their own mental health and family dynamics. Family dynamics explained 43.2% of the variance in caregiver burden and 50.1% of the variance in satisfaction with life, although family dynamics were not significantly associated with caregiver depression in the overall analysis. Family satisfaction was the only family dynamics variable to yield a significant unique association with any index of caregiver mental health (satisfaction with life). If similar findings emerge in future intervention research, interventions for pediatric SCI/D caregivers in Colombia and other similar global regions could benefit from including techniques to improve family dynamics, especially family satisfaction, given the strong potentially reciprocal connection between these dynamics and caregiver mental health. The degree of disability resulting from SCI/D can vary greatly depending on the severity and level of the lesion, though permanent impairment is often present that profoundly impacts both physical and psychological functioning. Very little is known about the impact of pediatric SCI/D in developing countries, despite the high rates of
Matthews, Judith T.; Lingler, Jennifer H.; Campbell, Grace B.; Hunsaker, Amanda E.; Hu, Lu; Pires, Bernardo R.; Hebert, Martial; Schulz, Richard
Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86) who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers. PMID:26288888
Judith T. Matthews
Full Text Available Health care providers typically rely on family caregivers (CG of persons with dementia (PWD to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86 who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers.
Shin, Dong Wook; Cho, Juhee; Roter, Debra L; Kim, So Young; Yang, Hyung Kook; Park, Keeho; Kim, Hyung Jin; Shin, Hee-Young; Kwon, Tae Gyun; Park, Jong Hyock
To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM. Most participants (>90%) thought that family should be involved in cancer TDM. When asked if the oncologist should allow family involvement if the patient did not want them involved, most patients and caregivers (>85%) thought they should. However, under this circumstance, only 56.0% of oncologists supported family involvement. Patients were significantly more likely to skew their responses toward patient rather than family decisional control than were their caregivers (P family decisional control than caregivers (P family involvement is helpful and neither hamper patient autonomy nor complicate cancer TDM process. Oncologists were largely positive, but less so in these ratings than either patients or caregivers (P family caregivers, and, to a lesser degree, oncologists expect and valued family involvement in cancer TDM. These findings support a reconsideration of traditional models focused on protection of patient autonomy to a more contextualized form of relational autonomy, whereby the patient and family caregivers can be seen as a unit for autonomous decision. Copyright © 2016 John Wiley & Sons, Ltd.
Domínguez Guedea, Miriam Teresa; Universidad de Sonora; Mandujano Jaquez, María Fernanda; Universidad de Sonora; Quintero Valenzuela, Marcela Georgina; Universidad de Sonora; Sotelo Quiñonez, Teresa Iveth; Universidad de Sonora; Gaxiola Romero, José Concepción; Universidad de Sonora; Valencia Maldonado, Jesús Ernesto; Universidad de Sonora
Using exploratory and confirmatory analysis factor, was validated the Social Support Scale for Family Caregivers of Older Adults. 23 items with factor loadings ≥ 0.51, grouped into four factors it explain 63% of the variance of the construct, with Cronbach’s alpha values ≥ 0.85; was shown that social support has a positive and significant causal relationship with material support (β = 0.66), practical support (β = 0.69), emotional support (β = 0.6), and counseling support (β = 0.81), the mode...
Ruiz-Robledillo, Nicolás; Romero-Martínez, Ángel; Moya-Albiol, Luis
Caring for an offspring with an eating disorder (ED) is associated with high levels of distress, and health problems. Indeed, ED caregivers have to cope with a range of challenges related to their caring role, which represents a chronic stress situation. This tends to alter body homeostasis and caregivers' health status. This study aimed to analyse the electrodermal reactivity and psychological response to acute stress in ED caregivers compared to non-caregivers. As expected, caregivers showed lower electrodermal (p family caregivers of people with EDs.
Wang, Jing; Xiao, Lily Dongxia; He, Guo-Ping; De Bellis, Anita
To examine socially, culturally and politically constructed factors affecting family caregiver practice in dementia care, and to identify possible changes in a country with undeveloped dementia services. In China and many other low- and middle-income countries, social transformations are weakening the family care model, which has an impact on the population with dementia. Exploring the challenges that caregivers face may help the international healthcare community to improve dementia services. A double hermeneutic approach informed by Giddens' Structuration Theory was used. In-depth semi-structured interviews with 23 family caregivers of people with dementia were conducted in 2012. The interviews were audiotaped, transcribed and analysed. Analyses revealed three consequences of socially constructed factors in dementia care, which constrained caregiver practice. First, caregivers were unable to manage behavioural and psychological symptoms of dementia. Untreated aggressive behaviours caused harm to the person with dementia and endangered the caregiver and the public. Second, the burden on the primary caregiver was evident and caregivers received limited support. Third, there was little coordination between primary and specialist care services for people with dementia. On critical reflection of potential changes that could improve dementia services, caregivers suggested that community nurses have a leading role in coordinating dementia services and supporting caregivers. Relying on family caregivers to care for people with dementia without the prevision of dementia services by the public healthcare system generates negative health outcomes for both care recipients and caregivers. The nursing workforce should be developed to support dementia services. © 2013 John Wiley & Sons Ltd.
Kliewer, Wendy; Parrish, Katie Adams; Taylor, Kelli W.; Jackson, Kate; Walker, Jean M.; Shivy, Victoria A.
A socialization model of coping with community violence was tested in 101 African American adolescents (55% male, ages 9-13) and their maternal caregivers living in high-violence areas of a mid-sized, southeastern city. Participants completed interviews assessing caregiver coping, family context, and child adjustment. Caregiver-child dyads also…
Thaís Oliveira da Silva; Patrícia Mônica Ribeiro; Maria Regina Martinez
The Alzheimer's disease is characterized by being a degenerative disease that affects the brain, promoting progressive impairment of mental function. The disease progresses to a stage of total dependence, which requires the assistance of health professionals and family caregivers. This study aimed to describe the relationship between the patient and family caregiver; and, to understand how the family caregivers experiences the care. The methodology adopted was the oral history with the techn...
Domínguez Guedea, Miriam Teresa; Mandujano Jaquez, María Fernanda; López Dávalos, German; Domínguez Guedea, Rosario Leticia; González Montesinos, Manuel Jorge; Sotomayor Petearson, Marcela; Fraijo Sing, Blanca
Well-being is a concept that has aroused multidisciplinary interest. Particularly in studies about family caregivers of older adults there has been the need to analyze this attribute facing the imminent increase of family caregivers. The goal of this paper is to describe the design process, the exploratory and confirmatory validation, as well as the usefulness of the current Scale of Subjective Well-Being of Family Caregivers for Older Adults - EBEMS/ CFAM. Results are shown in a sequence, fr...
Dumit, Nuhad Y; Abboud, Sarah; Massouh, Angela; Magilvy, Joan K
The purpose of this study was to explore perceptions of cardiac self-care among Lebanese family caregivers of cardiac patients. The specific aims were to describe the cultural context of cardiac care-giving in Lebanon and to explore the roles of family caregivers in enhancing self-care practices in patients with cardiac diseases. The role of family caregivers in Lebanon, a country in the Middle East, is assumed to extend beyond care-giving to making decisions on behalf of the patient and assuming responsibility for patient care. To date, there has been no study done to empirically validate this impression. The design of the study is qualitative descriptive that used semi-structured individual interviews with family caregivers of Lebanese cardiac patients. Thirteen family caregivers of cardiac patients were recruited from a referral medical centre in Lebanon. The participants were designated by their patients and interviewed in a place of their choice. One overarching and three themes emerged from data analysis describing roles of family care givers in cardiac self-care. The overarching theme was: Family caregivers of Lebanese cardiac patients were unfamiliar with the term, concept and meaning of Self-Care. The moral and emotional duty to care for the family member stemmed from obligation and responsibility towards patients (theme I). Interdependent care (theme II) between cardiac patients and their families emerged as a significant cultural role. Family members play multiple supportive roles in care-giving namely emotional, informational and instrumental role (theme III). In this study, family caregiver role is shown to be based in the sense of obligation and duty towards the sick family member who collectively provide different types of supportive care. Nurses have to give significant importance to the family caregiver role as an integral part of any culturally sensitive patient/family intervention. © 2015 John Wiley & Sons Ltd.
Bélanger, Louise; Bourbonnais, Anne; Bernier, Roxanne; Benoit, Monique
To review the literature concerning the feelings, thoughts and behaviours of nurses and family caregivers of hospitalised older persons when they communicate with one another. Communication between nurses and family caregivers of hospitalised older persons is not always optimal. Improving the frequency and quality of this communication might be a way to make the most of available human capital in order to better care for hospitalised older people. A literature review was carried out of qualitative, quantitative and mixed-design studies relating to communication between nurses and family caregivers. Findings were analysed thematically. Family caregiver thoughts, feelings and behaviours relative to nurse control and authority, nurse recognition of their contribution, information received from and shared with nurses and care satisfaction could influence communication with nurses. Nurse thoughts regarding usefulness of family caregivers as care partners and their lack of availability to meet family caregiver demands could influence communication with family caregivers. The thoughts, feelings and behaviours of family caregivers and nurses that might create positive or negative circular patterns of communication are evidenced. Further research is required to gain a more comprehensive understanding of the phenomenon. Nurses must be trained in how to communicate with family caregivers in order to form a partnership geared to preventing complications in hospitalised older persons. Results could be used to inform policy regarding the care of hospitalised older persons. © 2016 John Wiley & Sons Ltd.
Fong, Hiu-Fai; Bennett, Colleen E; Mondestin, Valerie; Scribano, Philip V; Mollen, Cynthia; Wood, Joanne N
In this qualitative study with nonoffending caregivers of suspected child sexual abuse victims, we aimed to explore the perceived impact of sexual abuse discovery on caregivers and their families, and caregivers' attitudes about mental health services for themselves. We conducted semistructured, in-person interviews with 22 nonoffending caregivers of suspected sexual abuse victims <13 years old seen at a child advocacy center in Philadelphia. Interviews were audio-recorded, transcribed, coded, and analyzed using modified grounded theory. Recruitment continued until thematic saturation was reached. We found that caregivers experienced significant emotional and psychological distress, characterized by anger, depressed mood, and guilt, after learning that their child may have been sexually abused. We identified four specific sources of caregiver distress: concerns about their child, negative beliefs about their parenting abilities, family members' actions and behaviors, and memories of their own past maltreatment experiences. Some caregivers described worsening family relationships after discovery of their child's sexual abuse, while others reported increased family cohesion. Finally, we found that most caregivers in this study believed that mental health services for themselves were necessary or beneficial to help them cope with the impact of their child's sexual abuse. These results highlight the need for professionals working with families affected by sexual abuse to assess the emotional and psychological needs of nonoffending caregivers and offer mental health services. Helping caregivers link to mental health services, tailored to their unique needs after sexual abuse discovery, may be an acceptable strategy to improve caregiver and child outcomes after sexual abuse.
Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi
Living with heart failure is a complex situation for family caregivers. Many studies addressing the challenges faced by heart failure family caregivers have already been conducted in Western societal settings. Sociocultural factors and perspectives influence the family caring experience and roles. The ethnic/culturally based differences in family caring behavior make this a subject worth further exploration and clarification. This study explores the experiences of family caregivers in Iran of caring for patients with heart failure. A descriptive, exploratory, and qualitative approach was applied to gain authentic insight into the experiences of participants. Purposive sampling was used to recruit 21 family caregivers from three educational hospitals in Isfahan, Iran. Data were collected using semistructured interviews and field notes. Interviews and field notes were transcribed verbatim and concurrently analyzed. Three major themes emerged from the analysis of the transcripts: caregiver uncertainty, lack of familial and organizational support, and Allah-centered caring. Participants believed that they did not have the basic knowledge related to their disease and drugs. In addition, they received little guidance from the healthcare team. Lack of support and insurance as well as financial issues were major problems faced by the caregivers. They accepted the providence of Allah and noted that Allah always helps them accomplish their caregiving responsibilities. The care performed by the caregivers of patients with heart failure exceeds their individual capabilities. Nurses, other healthcare providers, and health policy makers may use the findings of this study to develop more effective programs to address these challenges and to provide more effective support.Sociocultural factors and perspectives were the primary factors affecting the caregiving experiences of participants in this study. Improved understanding of these factors and perspectives will help healthcare
Vérez Cotelo N; Andrés Rodríguez NF; Fornos Pérez JA; Andrés Iglesias JC; Ríos Lago M.
Objectives: To evaluate the profile of family caregivers of Alzheimer?s disease patients, identify any signs of psychopathology, quantify the level of perceived burden on the caregiver, and determine the caregiver?s relationship with their pharmacist. Methods: A cross-sectional study was conducted at a community pharmacy in Pontevedra, Spain. Demographic variables were collected, and the following questionnaires were administered: the Beck Depression Inventory-II, STAI-Anxiety Questionnaire, ...
Guedes, Ana Catarina; Pereira, Maria da Graça
this study assessed burden, coping, physical symptoms and psychological morbidity in caregivers of functionally dependent family members. fifty family caregivers completed self-reported measures of burden, physical symptoms, psychological morbidity and coping strategies. there was a significant negative correlation between coping strategies and the different clinical variables, as well as a significant positive correlation between coping strategies and duration of care. It appears that the stronger bond between caregiver and family member leads to a poorer use of adaptive coping strategies. It also appears that the deterioration of the relationship between them and the lower perceived self-efficacy are more prominent in caregivers of family members with cognitive impairment, indicating that caregivers with family members without cognitive impairment face fewer difficulties. these results emphasize the need for interventions to include coping strategies, since they are important in reducing caregivers' burden, psychological morbidity and physical symptoms.
Schulz, Richard; Cook, Thomas B; Beach, Scott R; Lingler, Jennifer H; Martire, Lynn M; Monin, Joan K; Czaja, Sara J
Family caregivers generally underestimate the health and well-being of Alzheimer disease (AD) patients when compared to patients' self-assessments. The goals of this study were to identify caregiver, patient, and contextual factors associated with caregiver rating bias. One hundred five patients with AD, along with their family caregivers, were assessed twice by trained interviewers 1-year apart. In separate interviews, caregivers were asked to rate the quality of life and suffering of their patient relative, and patients provided self-ratings using the same structured instruments. Multivariate cross-sectional and longitudinal analyses were used to identify predictors of caregiver-patient discrepancies. Caregivers consistently reported significantly higher levels of suffering and lower levels of quality of life than patients. Caregiver psychological well-being and health status accounted for a substantial portion of the difference in caregiver and patient ratings in both cross-sectional and longitudinal analyses. Caregiver depression and burden were consistently positively associated with the magnitude of caregiver-patient discrepancy, and caregiver health status was negatively associated with the size of the discrepancy. Caregiver assessments of dementia patients may determine the type and frequency of treatment received by the patient, and caregivers' ability to reliably detect change in patient status can play a critical role in evaluating the efficacy of therapeutic interventions and pharmacologic agents. Clinicians and researchers working with dementia patients who rely on caregiver reports of patient status should be sensitive to the health and well-being of the caregiver and recognize that caregiver assessments may be negatively biased when the caregiver's own well-being is compromised. Copyright © 2013 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.
Hagedoorn, E I; Paans, W; Jaarsma, T; Keers, J C; van der Schans, C; Luttik, M Louise
Caregiving by family members of elderly with chronic conditions is currently intensifying in the context of an aging population and health care reform in the Netherlands. It is essential that nurses have attention for supporting roles of family caregivers of older patients and address family caregiving aspects on behalf of the continuity of care. This study aims to explore what aspects of family caregiving were addressed during planned discussions between nurses, patients and family caregivers in the hospital. Qualitative descriptive research was conducted using non-participant observation and audio-recordings of planned discussions between nurses, older patients and their family caregivers as they took place in the hospital. Through purposive sampling eligible patients (≥ 65 years) with one or more chronic conditions were included. These patients were admitted to the hospital for diagnostics or due to consequences of their chronic illness. Retrospective chart review was done to obtain patient characteristics. Data were collected in November/December 2013 and April/May 2014 in four hospitals. Qualitative content analysis was performed using the inductive approach in order to gain insight into addressed aspects of family caregiving. A total of 62 patients (mean age (SD) 76 years (7.2), 52% male) were included in the study, resulting in 146 planned discussions (62 admission and discharge discussions and 22 family meetings). Three themes were identified regarding addressed aspects of family caregiving. Two themes referred to aspects addressing the patients' social network, and included 'social network structure' and 'social network support'. One theme referred to aspects addressing coordination of care issues involving family caregiving, referred to as 'coordination of care'. During discussions nurses mostly addressed practical information on the patients' social network structure. When specific family caregiving support was addressed, information was limited and
Saito, Tami; Kondo, Naoki; Shiba, Koichiro; Murata, Chiyoe; Kondo, Katsunori
Long-term care systems may alleviate caregiver burdens, particularly for those with fewer resources. However, it remains unclear whether socioeconomic disparity in caregiver burdens exists under a public, universal long-term care insurance (LTCI) system. This study examined income-based inequalities in caregiving time and depressive symptoms in Japanese older family caregivers. We further compared inequality in depressive symptoms with that of non-caregivers to evaluate whether family caregiving exacerbates this disparity. Data were obtained from a cross-sectional, nationwide survey conducted by the Japan Gerontological Evaluation Study in 2013. Participants were functionally independent older adults aged ≥65 years (N = 21,584). Depressive symptoms were assessed using the Geriatrics Depression Scale (GDS); caregiving hours per week, household income, and other covariates were also assessed. Family caregivers occupied 8.3% of the total. A Poisson regression model revealed that caregivers in lower income groups (compared to those in the highest) were 1.32 to 1.95 and 1.63 to 2.68 times more likely to engage in ≥36 and ≥72 hours/week of caregiving, respectively. As for the GDS (≥5), an excess risk was found in the caregivers in lower (compared to higher) income groups (adjusted prevalence ratio: 1.57-3.10). However, an interaction effect of income by caregiving role indicated no significant difference in inequality between caregivers and non-caregivers (p = .603). The excess risk for GDS (≥5) in the caregivers compared to non-caregivers was observed across income groups. Our findings revealed a possible disparity in family caregivers under the public LTCI system. Further studies should examine factors associated with longer caregiving hours in lower income households. Our findings also suggest the necessity for more efforts to alleviate depressive symptoms in family caregivers under the LTCI system regardless of income level, rather than exclusively
Kim, Youngmee; Shaffer, Kelly M; Carver, Charles S; Cannady, Rachel S
The long-term impact of cancer caregiving on the family caregivers' quality of life (QOL) is currently not known. This study aimed (a) to characterize family caregivers of cancer survivors at 8 years post-diagnosis in terms of multidimensional aspects of QOL and (b) to identify demographic and early caregiving experience characteristics that may play significant roles in predicting the caregivers' longer-term QOL. A total of 1087 caregivers participated in the 8-year follow-up National Quality of Life Survey for Caregivers. Demographics and early caregiving experiences were measured 2 years post-diagnosis of their relative's cancer. Multidimensional aspects of QOL were assessed, including mental and physical health, psychological adjustment, and spirituality at both 2-year and 8-year post-diagnosis. Approximately 90% of family caregivers ceased the caregiver role by 8 years. One-fourth of them were due to bereavement. Caregivers' demographic and early caregiving characteristics were significantly associated with QOL. In addition, being bereaved by the 8-year mark predicted poorer mental health and greater psychological distress independent of contributions of demographic and early caregiving characteristics. Findings provided the first evidence that 8 years after the initial cancer diagnosis in the family, family members who became bereaved suffer from poorer mental health and greater psychological distress. Findings have theoretical implications for better understanding bereavement to cancer and practical implications for developing integrative programs to improve QOL among family members in the various phases of caregivership. Copyright © 2015 John Wiley & Sons, Ltd.
Liu, Ye; Li, Yuli; Chen, Lijun; Li, Yurong; Qi, Weiye; Yu, Li
To examine the relationships between family resilience and posttraumatic growth (PTG) of breast cancer survivors and caregiver burden among principal caregivers in China. Participants in this cross-sectional study comprised 108 women aged 26 to 74 years (M = 49, SD = 9) with early-stage breast cancer and 108 principal caregivers. Participants were recruited from a comprehensive cancer center of a public hospital in Shandong Province, China. The principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview; patients completed the Short Form of the Posttraumatic Growth Inventory and questions designed to obtain sociodemographic information. Hierarchical regression analysis was conducted to assess the adjusted association between family resilience and PTG and caregiver burden, while controlling for sociodemographics. Families showed a slightly elevated level of family resilience since the cancer experience, and patients showed a moderate degree of PTG. Principal caregivers reported moderate burden. The Shortened Chinese Version of the Family Resilience Assessment Scale total score was positively related to the Short Form of the Posttraumatic Growth Inventory total score (β = .28, P resilience impacts PTG of breast cancer survivors and caregiver burden. Our findings indicated the necessity of interventions to facilitate family resilience, promote PTG among breast cancer survivors, and decrease family members' caregiver burden. Copyright © 2018 John Wiley & Sons, Ltd.
Aoun, Samar M; Ewing, Gail; Grande, Gunn; Toye, Chris; Bear, Natasha
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.
Full Text Available Abstract Background Support groups have proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors that influence utilisation or quality expectations of family caregivers. These questions are addressed in the following paper. Methods The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Qualitative and quantitative data from 404 caregivers were analysed using content analysis and binary logistic regression analysis. Results The only significant predictor for utilisation is assessing how helpful support groups are for the individual care situation. Family caregivers all agree that psycho-educative orientation is a priority requirement. Conclusions In order to increase the rate of utilisation, family caregivers must be convinced of the relevant advantages of using support groups. Support groups which offer an exchange of experiences, open discussion, information and advice meet the requirements of family caregivers.
Sarvimäki, Anneli; Stenbock-Hult, Bettina; Sundell, Eija; Oesch-Börman, Christine
In Finland, the care of older persons is shifting from institutional care to family care. Research shows that family caregivers experience their situation much in the same way as professional nurses. The nurses' experiences have been studied in terms of vulnerability, and the same perspective could deepen our understanding of family caregivers' experiences. The aim of this study was to gain knowledge of the vulnerability of older caregivers taking care of an ageing family member. The research questions were as follows: How do family caregivers experience vulnerability? How do their experiences relate to vulnerability as understood by nurses? The study was done as a secondary analysis of focus group interviews on the experiences and daily life of older family caregivers. Four caregivers had taken part in monthly interviews during a period of 10 months. The interviews were analysed by deductive and inductive content analysis. The results showed that the caregivers saw caregiving as part of being human. They experienced a variety of feelings and moral agony and were harmed physically, mentally and socially. They showed courage, protected themselves and recognised that being a caregiver also was a source of maturing and developing. These results corresponded with the nurses' understanding of vulnerability. Shame, the experience of duty as a burden, worry and loneliness were themes that were found only among the family caregivers. The use of a matrix may have restricted the analysis, but using it in an unconstrained way allowed for new themes to be created. The results indicate a common humanness and vulnerability in professional and family caregiving. They also show that family caregivers need more support both from society and professionals. © 2016 Nordic College of Caring Science.
Chang, Chih-Cheng; Yen, Cheng-Fang; Jang, Fong-Lin; Su, Jian-An; Lin, Chung-Ying
The family caregivers of people with mental illness may internalize the public stereotypes into the affiliate stigma (i.e., the self-stigma of family members). This study aimed to compare the affiliate stigma across schizophrenia, bipolar disorder, and major depressive disorder, and to investigate potential factors associated with affiliate stigma. Each caregiver of family members with schizophrenia (n = 215), bipolar disorder (n = 85), and major depressive disorder (n = 159) completed the Affiliate Stigma Scale, Rosenberg Self-Esteem Scale, Caregiver Burden Inventory, Taiwanese Depression Questionnaire, and Beck Anxiety Inventory. After controlling for potential confounders, the hierarchical regression models showed that caregivers of a family member with schizophrenia had a higher level of affiliate stigma than those of bipolar disorder (β = -0.109; p Self-esteem, developmental burden, and emotional burden were significant factors for affiliate stigma. The affiliate stigma of caregivers is associated with their self-esteem, caregiver burden, and by the diagnosis.
Hall, Scott S; Kandiah, Jayanthi; Saiki, Diana; Nam, Jinhee; Harden, Amy; Park, Soonjee
Technological advances in monitoring vulnerable care-recipients are on the rise. Recent and future development of Smart Wear technology (devices integrated into clothing that monitor care-recipients) might assist family caregivers with tasks related to caring for young children, relatives with disabilities, and frail spouses or parents. However, the development and use of this technology in family caregiving contexts is in its infancy. Focus group interviews of family caregivers were conducted to explore perspectives regarding the potential integration of Smart Wear technology into their family caregiving. Responses were analyzed qualitatively for themes related to perceptions of how Smart Wear could impact relationships between caregivers and care-recipients. Three major themes emerged: quality and quantity of interaction, boundary issues, and implications for anxiety. Implications and recommendations are discussed regarding maximizing the potential benefits of Smart Wear technology in ways that promote and protect healthy relationships among caregivers and care-recipients.
Melchiorre, Maria Gabriella; Di Rosa, Mirko; Barbabella, Francesco; Barbini, Norma; Lattanzio, Fabrizia; Chiatti, Carlos
Introduction . Elder abuse is often a hidden phenomenon and, in many cases, screening practices are difficult to implement among older people with dementia. The Caregiver Abuse Screen (CASE) is a useful tool which is administered to family caregivers for detecting their potential abusive behavior. Objectives . To validate the Italian version of the CASE tool in the context of family caregiving of older people with Alzheimer's disease (AD) and to identify risk factors for elder abuse in Italy. Methods . The CASE test was administered to 438 caregivers, recruited in the Up-Tech study. Validity and reliability were evaluated using Spearman's correlation coefficients, principal-component analysis, and Cronbach's alphas. The association between the CASE and other variables potentially associated with elder abuse was also analyzed. Results . The factor analysis suggested the presence of a single factor, with a strong internal consistency (Cronbach's alpha = 0.86). CASE score was strongly correlated with well-known risk factors of abuse. At multivariate level, main factors associated with CASE total score were caregiver burden and AD-related behavioral disturbances. Conclusions . The Italian version of the CASE is a reliable and consistent screening tool for tackling the risk of being or becoming perpetrators of abuse by family caregivers of people with AD.
Menezes, Marina; Moré, Carmen Leontina Ojeda Ocampo; Barros, Luísa
To identify and analyze the significant networks of family, social and hospital support described by the family caregivers of hospitalized children 5-12 years during the hospital stay. Descriptive study, exploratory and qualitative study conducted with 20 caregivers of children hospitalized in a hospital in a city in southern Brazil, through semi-structured interviews and significant social networks maps, tailored to the hospital setting. Data analysis showed that the most active social network was comprised of families through emotional support, material aid and services. Relations with hospital health care team and the hospital context were cited as providing support to the caregivers of the hospitalized child. The identification of social networks in the child's hospitalization course enables equip professionals working in the institution aiming at better targeting of actions and care for the family and hospitalized children. Identificar e analisar as redes significativas de suporte familiar, social e hospitalar descritas pelos familiares acompanhantes de crianças hospitalizadas de 5 a 12 anos, durante o período de internação. Estudo descritivo, exploratório e de cunho qualitativo realizado com 20 acompanhantes de crianças hospitalizadas em uma unidade hospitalar em uma cidade do Sul do Brasil, por meio de entrevistas semiestruturadas e dos Mapas de Redes sociais significativas, adaptado para o contexto hospitalar. A análise dos dados demonstrou que a rede social mais atuante foi composta por familiares, através de apoio emocional, ajuda material e de serviços. As relações com a equipe de saúde do hospital e com o contexto hospitalar foram citadas como capazes de fornecer apoio ao acompanhante da criança internada. a identificação das redes sociais no curso da hospitalização da criança possibilita instrumentalizar os profissionais que atuam na instituição objetivando um melhor direcionamento de ações e cuidados destinados à família e a
Full Text Available Timothy Kwok,1,2 Alma Au,3 Bel Wong,1 Isaac Ip,1 Vivian Mak,1 Florence Ho11Jockey Club Centre for Positive Ageing, 2Department of Medicine and Therapeutics, Chinese University of Hong Kong; 3Department of Applied Social Sciences, Hong Kong Polytechnic University, Hong KongPurpose: Family caregivers of persons with dementia (PWD may receive caregiver training because of logistical constraints and privacy concerns. This study evaluated the effectiveness of an online intervention for family caregivers of PWD in improving their self-efficacy in managing behavioral and psychological symptoms of dementia (BPSD, and their emotion well-being.Subjects and methods: A total of 36 family caregivers of people with dementia participated in a 9-week online intervention based on the cognitive behavioral therapy model. Outcomes of the intervention were measured by the Chinese version of the Neuropsychiatric Inventory Questionnaire and two domains of the Revised Scale for Caregiving Self-Efficacy. Wilcoxon signed rank tests were used to compare the change in outcome variables.Results: The severity of BPSD of PWD and BPSD-related distress in family caregivers showed a statistically significant reduction after the intervention. Subgroup analysis showed self-efficacy in controlling upsetting thoughts significantly improved in caregivers of PWD at moderate to severe stages.Conclusion: Online cognitive behavioral therapy for family caregivers reduced BPSD of PWD and the related distress in their caregivers.Keywords: online intervention, dementia caregiver, emotional self-efficacy, BPSD
Bierhals, Carla Cristiane Becker Kottwitz; Santos, Naiana Oliveira Dos; Fengler, Fernanda Laís; Raubustt, Kamila Dellamora; Forbes, Dorothy Anne; Paskulin, Lisiane Manganelli Girardi
to reveal the felt and normative needs of primary family caregivers when providing instrumental support to older adults enrolled in a Home Care Program in a Primary Health Service in the South of Brazil. using Bradshaw's taxonomy of needs to explore the caregiver's felt needs (stated needs) and normative needs (defined by professionals), a mixed exploratory study was conducted in three steps: Descriptive quantitative phase with 39 older adults and their caregiver, using a data sheet based on patient records; Qualitative exploratory phase that included 21 caregiver interviews, analyzed by content analysis; Systematic observation, using an observation guide with 16 caregivers, analyzed by descriptive statistics. the felt needs were related to information about instrumental support activities and subjective aspects of care. Caregivers presented more normative needs related to medications care. understanding caregivers' needs allows nurses to plan interventions based on their particularities. identificar as necessidades sentidas e normativas dos cuidadores familiares principais no apoio instrumental a idosos registrados em um Programa de Atenção Domiciliar em uma Unidade Básica de Saúde no Sul do Brasil. usando a Taxonomia de Necessidades de Bradshaw para explorar as necessidades sentidas (necessidades declaradas) e normativas (definidas por profissionais), desenvolveu-se um estudo exploratório misto em três etapas: Etapa descritiva quantitativa, envolvendo 39 idosos e seus cuidadores, com a ajuda de um folha de dados baseada no prontuário do paciente; Etapa exploratória qualitativa, baseada em entrevistas com 21 cuidadores, analisadas mediante a análise de conteúdo; Observação sistemática, aplicando um roteiro de observação a 16 cuidadores, com análise estatística descritiva. as necessidades sentidas estavam relacionadas a informações sobre atividades de apoio instrumental e aspectos subjetivos do cuidado. Os cuidadores apresentaram maior número de
Ajay, Shweta; Kasthuri, Arvind; Kiran, Pretesh; Malhotra, Rahul
In India, owing to cultural norms and a lack of formal long-term care facilities, responsibility for care of the older person falls primarily on the family. Based on the stress process model, we assessed the association of type and number of impairments of older persons (∼primary stressors) with caregiver burden among their family caregivers in rural South India. All impaired older persons (aged ≥60, with impairment in activities of daily living (ADL) or cognition or vision or hearing) residing in 8 villages in Bangalore district, Karnataka, India, and their primary informal caregivers were interviewed. Caregiver burden was measured using the Zarit Burden Interview (ZBI; higher score indicating greater perceived burden). Linear regression models, adjusting for background characteristics of older persons and caregivers, assessed the association of type of impairment (physical [Yes/No], cognitive [Yes/No], vision [Yes/No] and hearing [Yes/No]) and number (1 or 2 or 3 or 4) of older person impairments with caregiver burden. A total of 140 caregivers, caring for 149 older persons, were interviewed. The mean (standard deviation) ZBI score was 21.2 (12.9). Of the various older person impairments, ZBI score was associated only with physical impairment (β=6.6; 95% CI: 2.1-11.1). Relative to caregivers of older person with one impairment, those caring for an older person with all 4 impairments had significantly higher ZBI score (β=13.9; CI: 2.5-25.4). Caregivers of older persons with multiple impairments, especially physical impairment, are vulnerable. Copyright Â© 2016 Elsevier Ireland Ltd. All rights reserved.
Rosenberg, Adriana; Tokovská, Miroslava
The aim: The aim of the study was to identify, describe and analyze approaches positively affecting care provided by family caregivers to the patients with Alzheimer’s disease with focus on caregivers’ perceptions and experience regarding personal participation in the support group. Methods: The qualitative cross-sectional descriptive study design was adopted. To gather empirical data semi-structured interviews with family caregivers was used. Twenty caregivers were recruited between January ...
Wang, Kwua-Yun; Sung, Pei-Yi; Yang, Sheng-Tzu; Chiang, Chi-Huei; Perng, Wann-Cherng
COPD becomes a long-term burden on family members who serve as day-to-day caregivers, and causes healthcare systems to incur substantial costs. COPD is both preventable and treatable, and one important aspect of COPD treatment is patients' self-management. This study aimed to investigate relationships between self-management and the caregiver burden, and the influence of family caregivers' caring behavior on COPD patients' self-care behavior. In a cross-sectional study conducted between March 2007 and January 2008, 192 pairs of COPD patients (age > 40 years, normal cognitive function) and their primary family caregivers were recruited to answer questionnaires measuring COPD characteristics and COPD knowledge (patients and caregivers); functional status, health beliefs, self-efficacy, and self-care (patients); and caring behavior and caregiver response (family members). All questionnaires were shown to have acceptable validity and reliability, and the data were analyzed using univariate and multivariate techniques. Patients' ages, scores in health belief, self-efficacy and disease-related knowledge were shown to correlate with patients' self-care behavior. Patients' self-care behavior was negatively correlated with family caregivers' caring behavior (ρ = -0.21, P = .003), but positively with caring duration of family caregiver caring behavior (ρ = 0.15, P = .037). Patients with a spouse as caregiver exhibited higher self-care ability than patients not married to their caregivers (P = .038). However, patients' self-care behavior decreased with higher family caregivers' COPD knowledge (P = .041) and caring behavior (P = .01), and patients regularly taking medication exhibited low self-care scores. Family caregivers' caring behavior had a partial negative effect on COPD patients' self-care behavior.
Liew, Tau Ming
Objective Pre?death grief is prevalent among dementia family caregivers. When unaddressed, it produces adverse outcomes. With its research primarily conducted in Caucasians, its applicability to non?Caucasians is uncertain. We explore the existence and the characteristics of pre?death grief in a multi?ethnic Asian population using an established pre?death grief scale?Marwit?Meuser Caregiver Grief Inventory (MM?CGI). Methods Seventy?two dementia family caregivers were recruited from a tertiary...
Maijala, Hanna; Paavilainen, Eija; Väisänen, Leena; Astedt-Kurki, Päivi
On the basis of earlier research, caregivers' actions when interacting with clients should be developed. However, nursing research has focused little attention on the interaction between caregivers and families expecting a fetally impaired child. The study aimed at generating a practical family nursing theory of caregivers' interaction with families expecting a malformed child. A grounded theory study was undertaken at Tampere University Hospital in Finland in 1999-2000. Data consisted of semi-structured interviews with 22 (n=22) nurses and doctors. The data were analysed using the constant comparative method. The interaction process starts when a caregiver informs the parents of the fetal impairment. The process is influenced by caregivers' attitude towards issues related to the family's life situation. Caregivers' views of their job, and of human coping and cultural attitudes towards these issues are also of importance. These factors account for their goals in the interaction, which, in turn, underlie their actions. When the caregiver's interpretation is that the family accepted the help provided, the outcome of the interaction is satisfaction with having been able to help. Correspondingly, in the case of an opposite interpretation, the caregiver experiences strain caused by inadequacy of the help he/she is providing. The core of interaction consists of two dimensions: gaining strength and losing strength in relation to impairment issues. Caregivers' views of helpful interaction were consistent with earlier research on the subject, but the findings of this study showed that more attention should be focused on the family as a whole. Furthermore, caregivers rarely criticized their own actions, thus their interaction skills should be upgraded by focusing on systematic self-assessment through training. Nursing research deepening our understanding of why interaction fails is warranted. The study results can be used in the family nursing practice as tools in
Lundberg, Pranee C; Doan, Thoa Thi Kim; Dinh, Thu Thi Xuan; Oach, Nhung Kim; Le, Phong Hoang
To examine the experiences of caregiving among Vietnamese family members of persons living with HIV/AIDS. As the number of persons living with HIV/AIDS increases, the need of family caregivers who can take responsibility for the home care of these persons increases. Vietnam has one of the fastest growing HIV epidemics in Asia. A descriptive cross-sectional study with quantitative and qualitative methods was used. A purposive sample of 104 family caregivers, both male and female, participated voluntarily by answering a questionnaire of caregiver burden, and 20 of them participated in in-depth interview. Female caregivers were mainly mothers and wives while male caregivers were mainly husbands, fathers and siblings. The largest group of family caregivers reported moderate to severe burden. There was no difference between genders in total caregiver burden, but there were several differences between older and younger caregivers in some items of caregiver burden. Five categories of experiences emerged: Different types of caregiving to persons living with HIV/AIDS, cultural and religious issues associated with caregiving, keeping secret to avoid stigma and discrimination, lack of knowledge about disease and provision of care, and fear, anxiety and frustration. Stigma and discrimination should be decreased by providing knowledge to the general public about HIV/AIDS, in particular about ways of transmission and protection. Special knowledge should be given to family caregivers to enable them to give care to persons living with HIV/AIDS at home. This could be done through culturally appropriate training/intervention programmes in which coping methods should be included. Support group interventions should also be carried through. The results obtained can be used as baseline information. Health care providers should consider gender, age and culture of family members of persons living with HIV/AIDS. Knowledge about HIV/AIDS, provision of care at home and in hospital, and
Finley, Joanne P
The many burdens faced by caregivers of patients with cancer are well documented. Caregivers are asked to perform procedures, make assessments, coordinate care, and communicate with healthcare providers at an increasingly complex level. A caregiver quality improvement project, in the form of a Caregiver Café, was instituted at a National Cancer Institute-designated comprehensive cancer center. . The objectives of the café are to (a) provide respite and a place for caregivers to relax and be nurtured, (b) provide a place for caregivers to meet and support each other, (c) provide answers to caregiver questions, and (d) recommend appropriate caregiver resources. . The weekly Caregiver Café is led by an advanced practice nurse, and the format varies depending on the needs of the caregivers who attend. . Caregivers have verbalized the importance of the café in helping them cope with their loved ones' cancers and treatments, and many attend on a regular basis. The Caregiver Café provides support and information and a place to get away from it all.
Corcoran, Mary A.
Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted.…
Garand, Linda; Lingler, Jennifer H.; Deardorf, Kaitlyn E.; DeKosky, Steven T.; Schulz, Richard; Reynolds, Charles F.; Dew, Mary Amanda
Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer’s Disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosis) is unknown. Using a cross-sectional design, we examined differences in the nature and extent of anticipatory grief between family caregivers of persons with a new diagnosis of mild cognitive impairment (MCI, n=43) or AD (n=30). We also determined whether anticipatory grief levels were associated with caregiver demographics, caregiving burden, depressive symptoms and marital quality. Mean anticipatory grief levels were high in the total sample, with AD caregivers endorsing significantly more anticipatory grief than MCI caregivers. In general, AD caregivers endorsed difficulty functioning whereas MCI caregivers focused on themes of “missing the person” they once knew. Being a female caregiver, reporting higher levels of objective caregiving burden and higher depression levels each bore independent, statistically significant relationships with anticipatory grief. Given these findings, family caregivers of individuals with mild cognitive deficits or a new AD diagnosis may benefit from interventions specifically addressing anticipatory grief. PMID:21946013
Kim, Jiyeon; Kim, Hongsoo
The purpose of this study was to examine the association between utilization of home care services under the national long-term care insurance system and family caregiver distress. A secondary data analysis was conducted in this study using data collected in 2011 and 2012 from the Korean version of International Resident Assessment Instrument (interRAI) Home Care assessment system. The study sample included 228 clients receiving community based home care and their family caregivers in Korea. Descriptive statistics, χ² test, t-test, and Heckman selection model analysis were conducted using SAS 9.3. Presence of family caregiver distress was significantly associated with days of nurse visits (β=-.89, p=caregiver distress was also significantly associated with days of nurse visits (β=-.66, p=.028). Other factors which were significantly associated with caregiver distress were depression, cognitive function, inadequate pain control, social support for older adult, and caregiver relationship to the older adult. The results of this study show that visiting nurse service and appropriate support programs for Older Adults and family caregivers experiencing caregiver distress should be developed and provided to families based on the health care needs of older adults and their family caregivers for effective and sustainable home care.
Degeneffe, Charles Edmund; Green, Richard; Jones, Clair
Purpose: The study aimed to understand how use and satisfaction with services following discharge from an acquired brain injury (ABI) acute-care facility related to family caregiver outcomes. Methods: A correlational and descriptive study design was used. Nineteen primary family caregivers of persons recently discharged from an ABI acute-care…
Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.
Purpose of the Study: We explore discrepancies in perceptions of values and care preferences between individuals with dementia (IWDs) and their family caregivers. Design and Methods: We interviewed 266 dyads consisting of an individual with mild to moderate dementia and his or her family caregiver to determine IWDs' beliefs for 5 values related to…
Yu, Hairong; Lingler, Jennifer H; Sereika, Susan M; Erlen, Judith A
Understanding caregiver's perceptions of their family member's memory loss is a necessary step in planning nursing interventions to detect and address caregiver burden. The purpose of this study was to characterize caregivers' perceptions of their family members' memory loss and identify potential correlates within Leventhal's common sense model (CSM). This secondary analysis used baseline data from a larger randomized controlled trial. Patients with memory loss and their caregivers (N = 83 dyads) from the community were included. The adapted Brief Illness Perception Questionnaire (BIPQ) assessed caregivers' illness perceptions. Eight additional instruments measured correlates within the CSM. Responses were described; multiple linear regression was used to predict BIPQ dimension scores, and logistic regression was used to predict dichotomized BIPQ scores. Most caregivers were female, White, and spouses of the patients; they reported a range of perceptions on the nine BIPQ dimensions. Patients' cognitive function consistently emerged as a significant correlate of caregivers' illness perceptions, explaining the most variance in caregivers' perceived consequences, identity, and treatment control (p family members' memory loss would last longer (p family members' memory loss varied; distinct dimensions of caregivers' illness perception were associated with a range of clinical and psychosocial factors. This exploratory study demonstrates the complexity of applying the CSM to caregivers of persons with memory loss.
Morimoto, Hiroshi; Furuta, Nobuo; Kono, Mitsue; Kabeya, Mayumi
This study examined the moderation effect of different dimensions of self-efficacy on the way in which various types of interrole conflict mediate between caregiving demands and the mental health of employed family caregivers. Using a moderated mediation approach, we examined the moderation effect of self-efficacy on interrole conflict's mediation between caregiving demands and mental health (psychological strain and quality of life) in a sample of Japanese employed family caregivers who regularly provide care at home (263 males aged 53.14 ± 8.28 years and 116 females aged 47.92 ± 9.77 years). Increased self-efficacy in managing dementia and in self-care were correlated with lower caregiving demands and better mental health among family caregivers. Self-efficacy in managing dementia was also positively correlated with increased interrole conflict. Increased caregiving demands were related to higher psychological strain in those with higher (+1SD), but not lower (-SD) self-efficacy in managing dementia. Self-efficacy does not play a protective role in managing the effect of caregiving demands on interrole conflict. It also does not appear to protect against any indirect effects of caregiving demands on the mental health of employed family caregivers.
Ducharme, Francine C; Lévesque, Louise L; Lachance, Lise M; Kergoat, Marie-Jeanne; Legault, Alain J; Beaudet, Line M; Zarit, Steven H
The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a control group (n = 49) receiving usual care. Eligible participants-primary caregivers of a relative diagnosed with Alzheimer in the past 9 months-were assessed blindly before randomization, at the end of the program (post-test), and 3 months later (follow-up) on different outcomes associated with healthy role transition. The analyses indicated that at post-test and follow-up, caregivers in the experimental group were more confident in dealing with caregiving situations, perceived themselves to be better prepared to provide care and more efficacious in their caregiver role, were better able to plan for the future care needs of their relative, had better knowledge of available services, and made more frequent use of the coping strategies of problem solving and reframing. The program had no significant effect on use of stress-management strategies, perceived informal support and family conflicts. This program underscores that a proactive intervention approach from the onset of the care trajectory is key to fostering caregiver adaptation to the new challenges they must meet.
Riffin, Catherine; Van Ness, Peter H; Wolff, Jennifer L; Fried, Terri
To estimate the number of caregivers providing assistance to community-dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health-related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Nationally representative surveys of caregivers and older adults in the United States. 2011 National Health and Aging Trends Study and National Study of Caregiving. Community-dwelling older adults and their family caregivers, who were selected on the basis of having assisted with mobility, self-care, household activities, transportation, or medical tasks. Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation. Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living-related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance. Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health-related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers
Wong, Jen D; Shobo, Yetunde
Guided by the life-course perspective, this study contributes to the family caregiving, aging, and disability literature by examining the daily experiences of three types of family caregivers in midlife and late adulthood. A sample of 162 caregivers from the National Survey of Midlife in the United States study completed interviews, questionnaires, and a Daily Diary Study. Multilevel models showed the patterns of daily time use did not differ by caregiver types. Caregivers of sons/daughters with developmental disabilities (DD) experienced more daily stressors than caregivers of parents with health conditions (HC) and caregivers of spouses with HC. Unmarried caregivers of sons/daughters with DD reported spending more time on daily leisure activities and exhibited greater daily stressor exposure than other family caregivers. Age did not moderate the associations between caregiver types and daily experiences. Findings highlight the important consideration of the caregivers' characteristics to better determine the quality of their daily experiences in midlife and late adulthood.
Hudson, Peter L; Thomas, Kristina; Trauer, Thomas; Remedios, Cheryl; Clarke, David
Palliative care services are required to support patients who have advanced, life-threatening, noncurable disease, and their family caregivers. Comprehensive psychological and social support for bereaved family members also is expected. However, recent systematic reviews have demonstrated significant gaps in evidence-based approaches for such support. Furthermore, a comprehensive understanding of the psychological and social response to the family caregiver role is required for support to be optimized. We sought to examine the psychological and social profile of family caregivers on commencement of receiving palliative care services. A self-report questionnaire was administered to primary family caregivers of patients within two weeks of admission to three palliative care services in Melbourne, Australia. The questionnaire incorporated six instruments that measured 11 family caregiver-related psychosocial factors; four instruments that measured caregiver psychological distress factors; 14 mental health lifetime risk factors; and a sociodemographic questionnaire. Three hundred and two family caregivers participated. Nearly half (44%) of the caregivers had a probable anxiety and/or depressive disorder, with 40% scoring more than the cutoff score for probable anxiety and 20% scoring more than the cutoff score for probable depression. Additionally, approximately 15% of caregivers met the criteria for pre-loss grief, and around 10% reported moderate to severe levels of demoralization. Caregivers who had a probable anxiety and/or depressive disorder also reported higher levels of pre-loss grief. This study provides further evidence of the prevalence of poor psychosocial well-being in this population. The results reinforce the need to develop suitable strategies for psychological and social support for family caregivers. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Ghazzawi, Andrea; Kuziemsky, Craig; O'Sullivan, Tracey
Family caregivers provide the stroke survivor with social support and continuity during the transition home from a rehabilitation facility. In this exploratory study we examined family caregivers' perceptions and experiences navigating the stroke rehabilitation system. The theories of continuity of care and complex adaptive systems were integrated to examine the transition from a stroke rehabilitation facility to the patient's home. This study provides an understanding of the interacting complexities at the macro and micro levels. A convenient sample of family caregivers (n = 14) who provide care for a stroke survivor were recruited 4-12 weeks following the patient's discharge from a stroke rehabilitation facility in Ontario, Canada. Interviews were conducted with family caregivers to examine their perceptions and experiences navigating the stroke rehabilitation system. Directed and inductive content analysis and the theory of Complex Adaptive Systems were used to interpret the perceptions of family caregivers. Health system policies and procedures at the macro-level determined the types and timing of information being provided to caregivers, and impacted continuity of care and access to supports and services at the micro-level. Supports and services in the community, such as outpatient physiotherapy services, were limited or did not meet the specific needs of the stroke survivors or family caregivers. Relationships with health providers, informational support, and continuity in case management all influence the family caregiving experience and ultimately the quality of care for the stroke survivor, during the transition home from a rehabilitation facility.
Vérez Cotelo N
Full Text Available Objectives: To evaluate the profile of family caregivers of Alzheimer´s disease patients, identify any signs of psychopathology, quantify the level of perceived burden on the caregiver, and determine the caregiver’s relationship with their pharmacist. Methods: A cross-sectional study was conducted at a community pharmacy in Pontevedra, Spain. Demographic variables were collected, and the following questionnaires were administered: the Beck Depression Inventory-II, STAI-Anxiety Questionnaire, Zarit Burden Scale, family APGAR scale, and the Duke-UNC questionnaire. Results: The typical caregiver profile consists of a 55-year old first degree relative (mostly daughters with a primary education who belongs to a functional or mildly dysfunctional family. Nearly one quarter (24% of caregivers had a high perception of burden, with anxiety in 20% of caregivers and symptoms of depression in 20%. Family caregivers usually went to the same pharmacy as the patients (96%, were treated with psychotropic drugs (68%, and interacted with the pharmacist (92%. Conclusion: This study confirmed that psychological distress and burden is present among family caregivers. Care for caregivers should be integrated into patient care as part of a national plan, including grants and subsidies, which will result in better care of Alzheimer's patients. Pharmacists are the most accessible health care professionals and can provide information about Alzheimer's disease management to caregivers to ease the burden of care.
Cotelo, Natalia Vérez; Rodríguez, N. Floro Andrés; PÉREZ, José A. Fornos; Iglesias, J. Carlos Andrés; Lago, Marcos Ríos
Objectives: To evaluate the profile of family caregivers of Alzheimer’s disease patients, identify any signs of psychopathology, quantify the level of perceived burden on the caregiver, and determine the caregiver’s relationship with their pharmacist. Methods: A cross-sectional study was conducted at a community pharmacy in Pontevedra, Spain. Demographic variables were collected, and the following questionnaires were administered: the Beck Depression Inventory-II, STAI-Anxiety Questionnaire, Zarit Burden Scale, family APGAR scale, and the Duke-UNC questionnaire. Results: The typical caregiver profile consists of a 55-year old first degree relative (mostly daughters) with a primary education who belongs to a functional or mildly dysfunctional family. Nearly one quarter (24%) of caregivers had a high perception of burden, with anxiety in 20% of caregivers and symptoms of depression in 20%. Family caregivers usually went to the same pharmacy as the patients (96%), were treated with psychotropic drugs (68%), and interacted with the pharmacist (92%). Conclusion: This study confirmed that psychological distress and burden is present among family caregivers. Care for caregivers should be integrated into patient care as part of a national plan, including grants and subsidies, which will result in better care of Alzheimer’s patients. Pharmacists are the most accessible health care professionals and can provide information about Alzheimer’s disease management to caregivers to ease the burden of care. PMID:26131040
Nance, Douglas C; Rivero May, Maria Isabel; Flores Padilla, Luis; Moreno Nava, Mario; Deyta Pantoja, Alma Laura
The purpose of this qualitative study was to examine the role of Mexican men caregivers of older adults. Studies investigating male caregiving practice in Mexico are lacking. Listening events for older adults and family caregivers were held in six cities, obtaining an ethnically and socioeconomically diverse sample of 121 participants-81 older adults and 57 primary caregivers (including 17 older adults). Focus groups discussed end-of-life issues and challenges of care. Discussions were audio recorded and field notes were made. Framework Analysis was used to analyze data. Nationally, 37% of the caregivers were men. In the metropolitan area of Mexico City, 57% of caregivers were men. The men caregivers discussed their roles and experiences. The results were categorized into three themes: (a) reciprocity in family caregiving, (b) a practical work-oriented attitude toward caregiving, and (c) strong religious faith. Caregiving formed an important part of their masculine role. Stereotypes related to gender and care should be reexamined. Further research is needed to explore gender variations in caregiving, evolving gender roles, and needs for support and services. © The Author(s) 2016.
Sherwood, Paula R; Price, Thomas J; Weimer, Jason; Ren, Dianxu; Donovan, Heidi S; Given, Charles W; Given, Barbara A; Schulz, Richard; Prince, Jennifer; Bender, Catherine; Boele, Florien W; Marsland, Anna L
Prolonged periods of family caregiving can induce stress levels that may negatively influence caregiver health. However, the physiologic effect of psychological distress in oncology family caregivers has received little attention. Therefore we aimed to determine longitudinal profiles of inflammatory cytokines (IL-6 and IL-1ra) in neuro-oncology caregivers and identify associations between psychological distress and cytokine levels. Depressive symptoms, anxiety, caregiver burden and blood were collected from 108 adult caregivers at adult patients' diagnosis, 4-, 8-, and 12-months. Trajectory analyses of log transformed cytokine levels were performed. Multiple logistic regression analyses evaluated the impact of psychological distress on cytokine levels. For both cytokines, two distinct populations were identified, neither of which changed over time. High IL-1ra was associated with male caregivers with anxiety (OR = 1.7; 95 %CI 1.06-2.83) and obese caregivers (BMI = 40) who felt burdened due to disrupted schedules (OR = 1.3; 95 %CI 1.02-1.77). Conversely, caregivers with a healthy weight (BMI = 25) who felt burdened due to disrupted schedules were less likely to have high IL-1ra (OR = 0.71; 95 %CI 0.54-0.92). Caregivers ≤30 years old with lower self-esteem from caregiving were 1.16 times (95 %CI 1.04-1.30) more likely to have high IL-6. Analysis demonstrated groups of family caregivers with high and low levels of systemic inflammation and these levels did not change longitudinally over the care trajectory. Poor physical health in family caregivers may have a negative impact on the burden placed on the healthcare system in general and on the well-being of neuro-oncology patients in particular.
Marquez, Jorge A; Ramírez García, Jorge I
Despite the high level of involvement of many family caregivers of adults with serious mental illness such as schizophrenia, little is known about their experiences with and beliefs about monitoring the psychiatric medication usage of their relatives. We used consensual qualitative research methods to analyze narratives on this topic by 12 Mexican-descent caregivers (160 pages of transcripts). The caregivers predominantly represented parent (mother) caregivers with levels of psychological distress and burden that were similar to those of larger samples of Mexican-descent caregivers. They represented equally high and low Expressed Emotion. We found that (a) caregivers' high knowledge (awareness) of medication usage was either tied to a hands-on monitoring approach or inferred by either the absence or the presence of their relatives' symptoms, (b) caregivers struggled with reconciling the symptom stabilization benefits of medication with the medications' side effects and limitations, and (c) most caregivers received little to no assistance from other available family members. Theory development and possible interventions involving family-assisted support of psychiatric medication usage should assess and possibly address caregivers' struggles with medications' side effects and low levels of support from available family.
Suwal, Juhee Varacharya
Full Text Available AbstractThis study revisited the “double jeopardy” hypothesis in terms of the health ofimmigrant family caregivers. It also investigated the effect of “reciprocity”(feeling of giving back something on the health of family caregivers. TheGeneral Social Survey 2002 Cycle 16 data were analyzed using χ2-test andLogistic regressions. About 16% of immigrants and 13.6% of non-immigrantssaid that their health was negatively affected as a result of caregiving.Immigrant family caregivers were three times more likely than non-immigrantsto report a health consequence. Reciprocity played a big role in this outcome.Given the fact that an increasing number of culturally diverse immigrants enterCanada every year and that the immigrant population is aging, more caregiverswill be in demand. Policy makers need to find ways to keep immigrantcaregivers healthy so that quality care can be given to immigrant older adultsand also for maintaining an overall healthy Canada.RésuméCette étude réexamine l'hypothèse de «non bis in idem» dans le contexte de lasanté des aidantes et aidants membres de familles immigrantes. Elle étudie aussil'effet de «réciprocité» (le sentiment de rendre quelque chose sur la santé desaidantes et aidants membres de la famille. Les données de l'Enquête socialegénérale 2002, cycle 16 ont été analysées à l'aide du test du χ² et de régressionslogistiques. À peu près 16% des immigrants et 13.6% des non-immigrantes ontreporté que leur santé avait été négativement affectée par leur dispensation desoins. Les aidantes et aidants membres de familles immigrantes avaient troisfois plus de chance de reporter une conséquence sur leur santé que ceux desfamilles non-immigrantes. La réciprocité jouait un rôle important dans cerésultat. Quand on considère qu'un nombre croissant d'immigrants issus decultures diverses entre au Canada chaque année et que la populationimmigrante vieillit, il est clair que plus en plus
Márcio Silveira Corrêa
Full Text Available Older familial caregivers of Alzheimer's disease patients are subjected to stress-related cognitive and psychophysiological dysfunctions that may affect their quality of life and ability to provide care. Younger caregivers have never been properly evaluated. We hypothesized that they would show qualitatively similar cognitive and psychophysiological alterations to those of older caregivers.The cognitive measures of 17 young (31-58 years and 18 old (63-84 years caregivers and of 17 young (37-57 years and 18 old (62-84 years non-caregiver controls were evaluated together with their salivary cortisol and dehydroepiandrosterone (DHEA levels, as measured by radioimmunoassays and ELISA assays of brain-derived neurotrophic factor (BDNF in serum.Although younger caregivers had milder impairments in memory and executive functions than older caregivers, their performances fell to the same or lower levels as those of the healthy older controls. Decreases in DHEA and BDNF levels were correlated with the cognitive dysfunctions observed in the older and younger caregivers, respectively. Cortisol at 10PM increased in both caregiver groups.Younger caregivers were prone to cognitive impairments similar to older caregivers, although the degree and the neuropsychological correlates of the cognitive dysfunctions were somewhat different between the two groups. This work has implications for caregiver and care-recipient health and for research on the neurobiology of stress-related cognitive dysfunctions.
Corrêa, Márcio Silveira; Giacobbo, Bruno Lima; Vedovelli, Kelem; Lima, Daiane Borba de; Ferrari, Pamela; Argimon, Irani Iracema de Lima; Walz, Julio Cesar; Bromberg, Elke
Older familial caregivers of Alzheimer's disease patients are subjected to stress-related cognitive and psychophysiological dysfunctions that may affect their quality of life and ability to provide care. Younger caregivers have never been properly evaluated. We hypothesized that they would show qualitatively similar cognitive and psychophysiological alterations to those of older caregivers. The cognitive measures of 17 young (31-58 years) and 18 old (63-84 years) caregivers and of 17 young (37-57 years) and 18 old (62-84 years) non-caregiver controls were evaluated together with their salivary cortisol and dehydroepiandrosterone (DHEA) levels, as measured by radioimmunoassays and ELISA assays of brain-derived neurotrophic factor (BDNF) in serum. Although younger caregivers had milder impairments in memory and executive functions than older caregivers, their performances fell to the same or lower levels as those of the healthy older controls. Decreases in DHEA and BDNF levels were correlated with the cognitive dysfunctions observed in the older and younger caregivers, respectively. Cortisol at 10PM increased in both caregiver groups. Younger caregivers were prone to cognitive impairments similar to older caregivers, although the degree and the neuropsychological correlates of the cognitive dysfunctions were somewhat different between the two groups. This work has implications for caregiver and care-recipient health and for research on the neurobiology of stress-related cognitive dysfunctions.
Antonella, Sisto; Flavia, Vicinanza; Daniela, Tartaglini; Giuseppe, Tonini; Daniele, Santini
Cancer diagnosis not only shakes the lives of those who are affected, but also has impacts on the entire family system, which is involved as if it were itself an organism affected by cancer. The oncological illness may cause a breakdown of the existing balance in the family system and demands a progressive degree of mutual adaptation to family members. The 'VoiNoi' Listening Centre of the Campus Bio-Medico University Hospital in Rome has been close to caregivers for several years, to support them in the difficult task of providing assistance through individual or group psychological support therapy and health education. The 'Charter of Rights for Family Caregivers' stems from the experience gained over the years, with the aim of protecting, supporting and strengthening the role and the assistance activity that families carry out in support of their loved ones under conditions of fragility.
Cheng, Shao-Yi; Dy, Sydney; Huang, Sin-Bao; Chen, Ching-Yu; Chiu, Tai-Yuan
Proxy data collection is a prevalent and important source of information in palliative medicine, and few studies have evaluated the level of agreement between different types of proxies. A study was conducted to compare the agreement in quality of dying of terminally ill cancer patients from the perspective of (i) the main family caregiver and (ii) the main caregiving physician. The Kappa statistic was applied to measure agreement between the proxies in a prospective study. Using the good death scale and the audit scales, 126 dyads (70%) were compared from a tertiary medical center in Taiwan. In general, the physicians rated quality of dying higher than did family caregivers. The kappa ranged from 0 to 0.232 for the five items, indicating marginal agreement. The prevalence index was applied to correct the Kappa statistic and showed the data to be asymmetrically distributed. Both proxies tended to agree at higher scores (Pneg = 0.745-0.996) in all five items and the total good death scale. For the audit scale, both proxies tended to agree at higher scores in most of the 12 items, except 'alleviation of anxiety', 'resolution of depression' and 'fulfillment of last wishes'. The observed agreement between the two proxies was good, except the psychological aspects, demonstrating the validity of proxy rating of patients between physicians and main caregivers. More communications toward the end-of-life issues should be encouraged and conducted in this population. Further research is needed to determine how to best use proxy assessments to evaluate the quality of the dying process.
Beach, Scott R; Schulz, Richard
To examine caregiver factors associated with unmet needs for care of older adults. Population-based surveys of caregivers and older adult care recipients in the United States in 2011. 2011 National Health and Aging Trends Study and National Study of Caregiving. Family caregivers (n = 1,996) of community-dwelling older adults with disabilities (n = 1,366). Disabled care recipient reports of unmet needs for care in the past month with activities of daily living (ADLs; e.g., wet or soiled clothing), mobility (e.g., have to stay inside), or instrumental activities of daily living (IADLs; e.g., medication errors). Caregiver reported sociodemographic characteristics, caregiving intensity and tasks performed, health, and psychosocial effects. Of the care recipients, 44.3% reported at least one unmet need for care in the past month (38.2% ADL related, 14.6% IADL related). Younger caregivers, caregiving sons, caregivers not living with care recipients, and having supplemental paid caregivers were associated with more unmet needs. Caregivers with recipients reporting two or more unmet needs were more likely to spend more than 100 hours per month caregiving, help with skin care and wounds, report caregiving as emotionally and physically difficult, and report restricted participation in valued activities (all P caregivers. Caregivers experiencing high levels of burden, stress, and negative physical and psychosocial impacts may provide substandard or poor care to older adults, which may be a risk factor for neglect. Clinicians caring for disabled older adults should assess their unmet needs and the capacity of caregivers to address them. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.
Villalobos, Bianca T; Ullman, Jodie; Krick, Tracy Wang; Alcántara, Darcy; Kopelowicz, Alex; López, Steven R
This study tested an attribution model of help-giving in family caregivers of persons with schizophrenia as it relates to caregivers' reported burden. We hypothesized (a) that caregivers' attributions of their ill relatives' responsibility for their symptoms would be associated with more negative and less positive affective reactions, (b) that affective reactions would be related to perceptions of administered support, and (c) that support would in turn predict greater burden. We examined 60 family caregivers of Mexican origin living in Southern California. Mexican Americans were chosen because of their high degree of contact with their ill relative, thereby facilitating the examination of help-giving and burden. Contrary to past studies, caregivers' attributions and affective stance were assessed independently, the former based on self-report and the latter based on codes drawn from the Camberwell Family Interview. Caregiver burden was assessed at baseline and one year later. Path analyses showed partial support for the attribution model of help-giving. Specifically, attributions of responsibility negatively predicted caregiver's warmth, which in turn predicted more administered support. Contrary to hypotheses, attributions were not associated with caregiver criticism, and criticism was positively related to administered support. In addition, caregiver support was not related to burden at either baseline or a year later. Criticism was a significant predictor of burden at follow-up through burden at baseline. The emotional stance of caregivers predicts burden independent of the help they provide. Caregiver criticism not only predicts negative patient outcomes but can predict negative caregiver outcomes as well. Positive clinical implications In family treatment, it is important to address caregiver criticism not only because of its relationship to poor clinical outcomes of ill relatives but also because of its relationship to greater caregiver burden. Integrating a
Sady, Maegan D; Sander, Angelle M; Clark, Allison N; Sherer, Mark; Nakase-Richardson, Risa; Malec, James F
To investigate the relationship of preinjury caregiver and family functioning to community integration outcomes in persons with traumatic brain injury (TBI). Inception cohort. Three TBI Model Systems inpatient rehabilitation facilities. Persons with TBI (N=141) and their caregivers admitted to inpatient rehabilitation and followed up at 1 to 2 years after injury. Not applicable. Community Integration Questionnaire and the Social and Occupation scales of the Craig Handicap Assessment and Reporting Technique. There were significant interactions of several preinjury caregiver and family variables with injury severity. For persons with complicated mild/moderate injury, better family functioning was associated with greater home integration, and less caregiver distress was associated with better social integration. For persons with severe injuries, greater caregiver perceived social support was associated with better outcomes in productivity and social integration. Preinjury caregiver and family characteristics interact with injury severity to affect outcomes in persons with injury. Research on outcomes should include measures of caregiver and family functioning. Early interventions targeted toward decreasing caregiver distress, increasing support, and improving family functioning may have a positive impact on later outcomes. Copyright © 2010 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
Sakanashi, Sayori; Fujita, Kimie
This concept analysis defined and described the components of empowerment of family caregivers who care for adults and the elderly. Rodgers evolutionary method of concept analysis was used. Data sources included Pub Med, CINAHL, Scopus, and Igaku Chuo Zasshi. Thirty articles published between 1995 and 2015 focusing on the empowerment of family caregivers providing care to adults and the elderly were selected. The analysis reveals 6 attributes, 5 antecedents, and 5 consequences. In addition, the results reveal structured aspects of family caregivers, care receivers, and other people surrounding them, and their relationships. Empowerment of adults' and elders' family caregivers may be defined as "positive control of one's mind and body, cultivating a positive attitude, proactively attempting to understand one's role as a caregiver to improve caregiving capabilities, focusing on others as well as oneself, supporting the independence of the care receiver, and creating constructive relationships with other people surrounding them." The components of empowerment clarified in this research can be used for the measurement of and interventions aimed at improving empowerment among family caregivers. Furthermore, clarifying the definition of empowerment among family caregivers enables researchers to better distinguish empowerment from similar concepts in the future. © 2017 John Wiley & Sons Australia, Ltd.
Gonzalez, Carmanny; Bakas, Tamilyn
Stroke survivor behaviors that caregivers identify as bothersome can lead to family caregiver stress, which can result in premature institutionalization of the survivor. The purpose of this study was to explore demographic and theory-based factors associated with survivor bothersome behaviors as identified by family caregivers. A secondary analysis of a combined sample of 96 family caregivers of stroke survivors was conducted using baseline data from 2 existing studies. Bothersome behaviors were measured using the Revised Memory and Behavior Problems Checklist (RMBPC). Theory-based factors were measured using well-validated scales. Male stroke survivors exhibited more bothersome behaviors (t = 3.53, p nursing interventions designed to reduce bothersome behaviors as identified by family caregivers. PMID:23686515
Hsiao, Chiu-Yueh; Lee, Chun-Te; Lu, Huei-Lan; Tsai, Yun-Fang
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.
Dowling, Glenna A; Merrilees, Jennifer; Mastick, Judy; Chang, Vickie Y; Hubbard, Erin; Moskowitz, Judith Tedlie
Aberrant psychological and behavioral symptoms are common in patients with dementia. These symptoms have negative consequences for family caregivers, causing stress and burden. Frontotemporal dementia (FTD) symptoms cause more pronounced stress and burden on caregivers than those associated with Alzheimer dementia. In this randomized, attention control pilot study, we delivered 5-weekly, one-on-one, positive affect intervention sessions to family caregivers of people with FTD. The program, Life Enhancing Activities for Family Caregivers: LEAF was conducted in-person or by videoconference with caregivers across the United States. Measures of affect, caregiver mood, stress, distress, and caregiver burden were assessed at baseline, end of sessions, and 1 month after completion. Twenty-four caregivers (12 intervention and 12 attention control) participated. At the end of the intervention, scores on positive affect, negative affect, burden, and stress all improved in the intervention compared with the control group. These scores continued to show improvement at the assessment done 1 month after intervention. Subjects were receptive to the skills and the delivery methods. The positive emotion skill-building intervention proved feasible especially in the internet videoconference delivery format. The intervention promoted positive affect and improved psychological outcomes for family caregivers of people with FTD.
Giannini, Courtney; Irby, Megan B; Skelton, Joseph A
To explore caregivers' expectations of pediatric weight management prior to starting treatment. Interviews conducted with 25 purposefully selected caregivers of children, ages 8-12 years, waiting to begin 4 different weight management programs. Interviews were conducted and recorded via telephone and coded using a multistage inductive approach. Caregivers listed specific motivators for seeking treatment that did not often align with clinical measures of success: caregivers perceived child's socio-emotional health improvement to be an important success measure. Caregivers understood the program's approach, but were unsure of the commitment required. Caregivers were confident they would complete treatment but not in being successful. Caregivers' expectations of treatment success and their role in treatment may be a hindrance to adherence.
Blucker, Ryan T; Elliott, Timothy R; Warren, Robert H; Warren, Ann Marie
Although much is known about the risks to health and well-being that occur among family caregivers of children with disability, little is known about the unique group of caregivers of children with severe neurodisabilities who require varying degrees of respiratory care including ventilator support. This present study examined the psychological adjustment of caregivers in these situations, and tested the prediction that caregiver coping and problem-solving styles would be predictive of their physical and emotional health. Hierarchical regression analyses revealed that demographic characteristics and the severity of pulmonary condition were unrelated to caregiver adjustment. A coping style characterized by developing relationships, pursuing activities that promote self-worth and individuality, and a lower negative orientation toward solving problems were significantly predictive of caregiver distress. These data indicate that caregiver adjustment in these situations is influenced by cognitive-behavioral characteristics that could be addressed in educational and therapeutic programs provided in the clinic and in the community.
Välimäki, Tarja; Vehviläinen-Julkunen, Katri; Pietilä, Anna-Maija; Koivisto, Anne
Family caregivers provide the majority of home care of people with Alzheimer's disease. In this study, we discuss family caregivers' life orientation and changes in life orientation during the first year after the diagnosis of Alzheimer's disease. Family caregivers' unstructured diaries (n = 83), of the first six months after diagnosis (years 2002-2004), were analyzed using qualitative content analysis. Two core themes emerged from the data analysis: the meaning of the onset of Alzheimer's disease for the lives of family caregivers, and restructuring life in its entirety. Family caregivers face challenges in their life orientation after the onset of their family members' Alzheimer's disease. Their personal milieu, familial cohesion, and conception of the future consequentially change. They face multiple challenges in the process of becoming caregivers. In this study, it was revealed that the process starts before the diagnosis of Alzheimer's disease and has an impact on their future. We conclude that family caregivers' well-being should be assessed at the time of the diagnosis of Alzheimer's disease. © 2012 Wiley Publishing Asia Pty Ltd.
Kim, Hyunmin; Paige Powell, M; Bhuyan, Soumitra S; Bhuyan, Soumitra Sudip
Family caregivers play an important role to care cancer patients since they exchange medical information with health care providers. However, relatively little is known about how family caregivers seek medical information using mobile apps and the Internet. We examined factors associated with medical information seeking by using mobile apps and the Internet among family caregivers and the general public using data from the 2014 Health Information National Trends Survey 4 Cycle 1. The study sample consisted of 2425 family caregivers and 1252 non-family caregivers (the general public). Guided by Comprehensive Model of Information Seeking (CMIS), we examined related factors' impact on two outcome variables for medical information seeking: mobile apps use and Internet use with multivariate logistic regression analyses. We found that online medical information seeking is different between family caregivers and the general public. Overall, the use of the Internet for medical information seeking is more common among family caregivers, while the use of mobile apps is less common among family caregivers compared with the general public. Married family caregivers were less likely to use mobile apps, while family caregivers who would trust cancer information were more likely to use the Internet for medical information seeking as compared to the general public. Medical information seeking behavior among family caregivers can be an important predictor of both their health and the health of their cancer patients. Future research should explore the low usage of mobile health applications among family caregiver population.
Joseph, Christine L.M.; Havstad, Suzanne; Johnson, Christine C.; Vinuya, Rick; Ownby, Dennis R.
It is unknown if teenagers and caregivers give similar responses when interviewed about the teen’s asthma. We analyzed data for 63 urban African-American teen-caregiver pairs. Caregivers underestimated teen smoking by 30%, gave lower estimates for teen exposure to passive smoke, and disagreed with teens on controller medication usage. Teen-caregiver responses were not significantly different for estimates of symptom-days, activity limitations, or nights awakened; nor were they significantly d...
ZamZam, Ruzanna; Midin, Marhani; Hooi, Lim S; Yi, Eng J; Ahmad, Siti NA; Azman, Siti FA; Borhanudin, Muhammad S; Radzi, Rozhan SM
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 asso...
Full Text Available Objectives: There is worldwide growth in the elderly population. Family care of elderly is key to long term care system and main duty of women at home. Qualitative study about facilitating and hindering factor of family care giving process provide clarified viewpoint on female caregivers need to plan and make effective supportive health policy. Methods & Materials: The present study was conducted by grounded theory. A purposive sample of 12 family caregiver participated in this study and data was gathered by deeply semi-structured interview and observation in the field. All of them were transcribed word by word and were analyzed through open, axial and selective coding according to Strauss and Corbin's approach (1998. Triangulation of the data gathering from different methods, prolonged engagement with caregivers, member check by participants and experts, was used to increase rigor of the study. Results: Female caregivers experience facilitator and hindering factors that affect the care giving process. These factors were categorized in 3 main classes of personal, familial and external factors and 9 subcategories of caregiver's knowledge on elderly care, personal characters of caregiver and care recipient, care giving burden, background of interpersonal relationship between caregiver and care recipient, familial supportive network, family member participation, formal supportive system, context of family care giving at home, and community based health care systems for elder people. Conclusion: Naturally, intervening factors in care giving process can confront caregivers with relief or difficulty Based on caregivers experiences, modifying facilitator and hindering factors by more family participation, psychosocial support, care giving education, improvement of care giving context and establishing appropriate age friendly health care systems would be effective in managing of the process by female caregivers, and could be helpful for them to be
Fernandes, Carla Sílvia; Angelo, Margareth
Aimed to identify the main needs expressed by family caregivers in caring for adependent person. An integrative review of the literature in the period between 2010 and 2015 using specific search engine tools in the EBSCO and SCOPUSdatabases. 11 articles were selected, and the analysis of the scientific evidence obtained allowed for organizing the results into five thematic areas:transition into care, being responsible for everything, the importance of support, access to formal support, communication and informationprocesses. The results showed that caregivers have many needs in different areas, which should be addressed in nursing interventions. Este estudo teve como objetivo identificar quais as principais necessidades manifestadas pelo cuidador familiar no cuidado à pessoa dependente. Realizou-se uma revisão integrativa da literatura no período entre 2010 e 2015 com o recurso de instrumentos de busca específicos, nas bases de dados EBSCO e SCOPUS. Foram selecionados 11 artigos A análise da evidência científica obtida permitiu organizar os resultados em cinco áreas temáticas: a transição para o cuidar, o ser responsável por tudo, a importância do suporte, o acesso aos apoios formais, a comunicação e a informação na tomada de decisão. Os resultados demonstram que o cuidador apresenta inúmeras necessidades em áreas distintas,as quais devem ser abordadasnas intervenções de enfermagem.
Han, Yanhong; Hu, Deying; Liu, Yilan; Caihong Lu; Luo, Zhiguo; Zhao, Jing; Lopez, Violeta; Mao, Jing
To determine the coping styles of family caregivers of patients with esophageal cancer and examine the relationships between depression, coping styles and social support. A descriptive and correlational survey was conducted in three university-affiliated oncology and thoraco-cardiac surgery departments in Shiyan, China. A convenience sample of 301 Chinese family caregivers of hospitalized patients with esophageal cancer were asked to respond to a set of four questionnaires including: Socio-demographic questionnaire, Center for Epidemiological Studies Depression, Brief COPE Inventory, and Multidimensional Scale of Perceived Social Support. For the positive coping style, male caregivers used more problem-coping than female caregivers. However, for negative coping, both male and female caregivers used maladaptive coping styles. There were significant correlations between emotion-focused coping styles with adaptive coping, maladaptive coping, depression and social support. Family caregivers play a major role in caring for cancer patients and suffer from various psycho-social problems. What is lacking in the literature was to address the cultural differences in cancer caregiving burden, roles, and appropriate interventions to help them face the multiple demands of caregiving. Therefore, a need to develop and evaluate interventions using randomized clinical trials and sensitive instruments to measure the effectiveness of the intervention on patients' and caregivers' outcomes. Copyright © 2014 Elsevier Ltd. All rights reserved.
Wasilewski, Marina B; Stinson, Jennifer N; Cameron, Jill I
For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers' health outcomes. We followed Arksey and O'Malley's methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of
Doser, Karoline; Norup, Anne
with more severe injuries, who spent more time on caregiving and reported more unmet needs. Overall, spouses spent significantly more time taking care of their family member than parents and reported higher levels of burden. CONCLUSIONS: The findings emphasized the continuing consequences of brain injury...... on not only the individual with the brain injury, but also on the surrounding family. Spouses, caregivers of patients with more severe injuries, who spent more time on caregiving and reported more unmet needs experienced higher levels of burden in the chronic phase. Future intervention programmes should......OBJECTIVE: To investigate caregiver burden and factors associated with caregiver burden among family members of patients with severe brain injury in the chronic phase. Additionally, the study aimed at investigating differences in burden between parents and spouses. METHODS: Forty-four Danish...
Navab, Elham; Negarandeh, Reza; Peyrovi, Hamid; Navab, Peyman
Although there is evidence of stigmatization of patients with Alzheimer's disease, few studies have evaluated stigma among family caregivers. This study was aimed at understanding the experiences of family caregivers of persons with Alzheimer's disease within Iran. We conducted a qualitative study using hermeneutic phenomenology. Semistructured in-depth interviews with 10 Iranian family caregivers of persons with Alzheimer's were audiotaped and transcribed. The transcriptions were then analyzed using Van Manen's method. Family stigma emerged as one of the most important themes in this study. It consisted of two subthemes of "feeling of shame due to the unusual behaviors and speech of the patients" and "fear of judgments made by others." An understanding of the experience of family stigma may lead to the development of supportive strategies to manage this problem among the caregivers. Educating families of patients about the disease plays a critical role in facilitating the process of caregiving. In addition, promoting public awareness about Alzheimer's disease can diminish stigma and prejudice toward patients and their caregivers. Educating caregivers on stigma management may also be an important factor in alleviating their stress. © 2012 Wiley Publishing Asia Pty Ltd.
This paper reports on the research findings derived from a grounded theory study that examined the processes through which community mental health nurses work with families of older people with depression. Data were collected through semistructured, in-depth interviews with six community mental health nurses and seven family caregivers of older people with depression, and observations of their interactions in natural settings. Data collection and analysis were guided by theoretical sampling and the constant comparative process. The findings indicate that the nurse-family caregiver relationship involves working towards mutuality, which is shaped by both the nurse and family caregiver. It is through the process of "shaping mutuality" that a nurse and family caregiver learn to collaborate, and achieve their individual goals and desired outcomes, both for the patient and for themselves.
Nakken, Nienke; Spruit, Martijn A.; Wouters, Emiel F. M.; Schols, J.M.G.A.; Janssen, Daisy J. A.
Background Family caregivers already have a paramount role in daily care for patients with chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), or chronic renal failure (CRF). To date, it remains unknown whether and to what extent the experience of caregiving changes over time.
U.S. Department of Health & Human Services — This report estimates the economic value of family caregiving at $450 billion in 2009 based on 42.1 million caregivers age 18 or older providing an average of 18.4...
Coogle, Constance L., Ed.; Finley, Ruth B., Ed.
Although this training manual was developed as a tool for trainers of African American and rural family caregivers of elders with dementia, it can easily be adapted for trainers of caregivers (both formal and informal) of persons other than those with dementia. The first section educates potential trainers about dementia, rural issues, ethnic…
Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.
Purpose of the Study: Cross-sectional evidence indicates that family caregivers reporting on the importance of daily care values and preferences of individuals with mild-to-moderate dementia consistently report less importance than individuals with dementia (IWDs) self-report. Discrepancy is primarily associated with caregivers' beliefs about…
Ray, Robin A; Street, Annette F
This paper reports a study of how family members caring for people living with motor neurone disease managed the deteriorating body, their own bodywork and the associated emotional labour. People living with the neurodegenerative condition of motor neurone disease face the prospect of dying in 3-5 years from progressive loss of voluntary muscle mass and function, culminating in respiratory failure. Theories concerning the body in illness have been used to illustrate patient perspectives; however, family caregivers' experiences of the body have been neglected. An ethnographic case study was undertaken with 18 primary family caregivers and six peripheral caregivers. Primary caregivers participated over 10 months in three face-to-face, semi-structured interviews which included mapping their support networks using ecomaps. Observational data were also recorded as field notes. Peripheral caregivers were interviewed once during the same time period. The data were generated between 2003 and 2004. Informal caregiving requires engagement in various aspects of bodywork. Three body concepts were identified: the visible body--how the disease affected the patient and caregivers; the dependent body--the resulting care requirements; and the social body--how living with motor neurone disease affected their social support networks. The visible body is a continual reminder of the ravages of the disease, while the dependent body demands physical and emotional care. Social interactions decline over time, depriving family caregivers of the much needed support for sustaining their commitment to the bodywork required in caregiving. The demands of bodywork for family caregivers are increased by the continual presence of emotional labour as they seek to implement the best way to support their relative with motor neurone disease. Nurses and allied healthcare workers need to assess each family situation, asking appropriate questions to establish the most appropriate interventions to
Daniel M. Rosney
Full Text Available Introduction: Care providers consistently report negative consequences to their mental health as a direct result of their caregiving responsibilities. Specifically, they describe higher levels of distress, mental health problems, and depressive symptoms compared to their non-caregiving matched controls. Powerful Tools for Caregivers (PTC is a national program that aims to empower caregivers to better care for themselves and enhance their self-efficacy. The purpose of the present study was to determine and quantify the effectiveness of the PTC program through pre/post data analysis. Methods: PTC intervention was evaluated at two questionnaire time points: pre-PTC and post-PTC between June 30, 2004 and Oct 16, 2013. Paired sample t-tests (n=409 were conducted using SPSS Statistics Version 22 (IBM Corp., Armonk, NY. Results: PTC increased caregivers who conducted self-care behaviors, who demonstrated self-efficacy, management of depressing emotions and those who used community resources. Conclusion: PTC results in caregivers reporting that they are taking better care of themselves, reacting to their emotions in a healthier manner, gaining more confidence in their caregiving abilities and coping skills, and becoming more knowledgeable about receiving assistance from their community resources.
Shlafer, Rebecca J.; Poehlmann, Julie
This longitudinal, mixed method study focused on 57 families of children who participated in a mentoring program for children of incarcerated parents. Children ranged in age from 4 to 15 years. Monthly interviews were conducted with children, caregivers, and mentors during the first six months of program participation, and questionnaires were administered at intake and six months to assess caregiver–child and incarcerated parent–child relationships, contact with incarcerated parents, and children’s behavior problems. Although some children viewed their incarcerated parents as positive attachment figures, other children reported negative feelings toward or no relationship with incarcerated parents. In addition, our assessments of children nine years old and older revealed that having no contact with the incarcerated parent was associated with children reporting more feelings of alienation toward that parent compared to children who had contact. Children’s behavior problems were a primary concern, often occurring in a relational context or in reaction to social stigma associated with parental imprisonment. PMID:20582847
... health of their loved ones into their hands should not suffer from the toll caregiving can take. There is... work toward rehabilitation or recovery. In 2010, I was proud to sign the Caregivers and Veterans..., I have hereunto set my hand this thirty-first day of October, in the year of our Lord two thousand...
Prudente, Cejane Oliveira Martins; Ribeiro, Maysa Ferreira Martins; Porto, Celmo Celeno
The scope of this study was to analyze the quality of life of family caregivers of adults with spinal cord injury. Two researchers conducted a systematic review independently, based on articles published between 2000 to 2014, using the key words quality of life and caregivers or family and spinal cord, in Portuguese, English and Spanish. The search was conducted in the Virtual Health Library (BVS) and the United States National Library of Medicine (PubMED) databases. Caregivers of tetraplegics have a worse quality of life than caregivers of paraplegics. Changes in the quality of life for the caregivers were not significant over time. Different results were observed when comparing caregivers of adults with spinal cord injury and healthy subjects. Factors that negatively influence the quality of life of caregivers were the presence of chronic disease; greater care time, age and number of children; and lower schooling level of caregivers. There is a need for public health policy development and preparation of more comprehensive intervention strategies that include not only the patient but also the caregiver.
Kim, Sun Kyung; Park, Myonghwa; Lee, Yunhwan; Choi, Seong Hye; Moon, So Young; Seo, Sang Won; Park, Kyung Won; Ku, Bon D; Han, Hyun Jeong; Park, Kee Hyung; Han, Seol-Heui; Kim, Eun-Joo; Lee, Jae-Hong; Park, Sun A; Shim, Yong S; Kim, Jong Hun; Hong, Chang Hyung; Na, Duk L; Ye, Byoung Seok; Kim, Hee Jin; Moon, Yeonsil
Personality may predispose family caregivers to experience caregiving differently in similar situations and influence the outcomes of caregiving. A limited body of research has examined the role of some personality traits for health-related quality of life (HRQoL) among family caregivers of persons with dementia (PWD) in relation to burden and depression. Data from a large clinic-based national study in South Korea, the Caregivers of Alzheimer's Disease Research (CARE), were analyzed (N = 476). Path analysis was performed to explore the association between family caregivers' personality traits and HRQoL. With depression and burden as mediating factors, direct and indirect associations between five personality traits and HRQoL of family caregivers were examined. Results demonstrated the mediating role of caregiver burden and depression in linking two personality traits (neuroticism and extraversion) and HRQoL. Neuroticism and extraversion directly and indirectly influenced the mental HRQoL of caregivers. Neuroticism and extraversion only indirectly influenced their physical HRQoL. Neuroticism increased the caregiver's depression, whereas extraversion decreased it. Neuroticism only was mediated by burden to influence depression and mental and physical HRQoL. Personality traits can influence caregiving outcomes and be viewed as an individual resource of the caregiver. A family caregiver's personality characteristics need to be assessed for tailoring support programs to get the optimal benefits from caregiver interventions.
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.
Cutrino, Annette; Santamaria, Judy
This article focuses on issues and research related to informal caregivers. The first 2 profiled studies looked at caregiver burden with 1 study conducted in the United States and the other in Thailand. Caregiver burden refers to the physical and emotional risks facing caregivers who are taking care of a relative or friend. Both found that the level of caregiver burden was related more to caregiver perception and attitude than to patient disease or other patient characteristic. Other important findings can be found in the summaries in this research brief. The third article profiles an investigation that was part of the Resources for Enhancing Alzheimer's Caregiver Health (REACH II) initiative. Amanda Elliott and colleagues provide evidence of an intervention that was successful in improving caregiver health. The fourth write-up summarizes an important meta-analysis recently published on evaluating the effectiveness of family caregiver interventions on reducing behavioral and psychological symptoms in people with dementia and reducing caregiver negative reactions to these symptoms. Interested readers are encouraged to read the original articles for more details.
van Wijngaarden, Bob; Schene, Aart H.; Koeter, Maarten W. J.
BACKGROUND: Attention to caregiving consequences has been mainly restricted to schizophrenia, although studies suggest that relatives of depressed patients also experience considerable distress. These studies, however, were conducted on small samples or with nonvalidated instruments. In our study,
Corrêa, M S; Vedovelli, K; Giacobbo, B L; de Souza, C E B; Ferrari, P; de Lima Argimon, I I; Walz, J C; Kapczinski, F; Bromberg, E
The progressive loss of memory and autonomy of Alzheimer's Disease (AD) patients, together with their characteristic behavioral and psychological symptoms, subjects their family caregivers to chronic stress. Several studies indicate that these caregivers are predisposed to cognitive impairments, but the physiological correlates of these alterations remain to be elucidated. Analyze the effects of chronic stress of family caregivers of AD patients on cognition, cortisol/DHEA ratios and BDNF levels and investigate the relation between these variables. Seventeen family caregivers (64.83 ± 3.64 years) of patients with AD and eighteen non-caregivers (58.29 ± 3.16 years) completed stress, depression and anxiety inventories. Exclusion criteria were current neurological disorders, major unstable medical illnesses, use of medications that could interfere with cognitive or HPA axis function and dementia. Attention, working memory and executive function were assessed with Digit Span and Trail Making tests, and declarative memory was analyzed with the Logical Memory test. Saliva was collected at 8 AM and 10 PM and its cortisol and DHEA levels determined by radioimmunoassay. Serum BDNF levels were measured by sandwich-ELISA. Results were analyzed with independent samples t test, covariance analysis and linear regressions. The statistical significance was set at pCaregivers showed more stress, depression and anxiety symptoms than non-caregivers, as well as significantly worse performances on attention, working memory and executive function tests. Caregivers also had higher cortisol/DHEA ratios and lower BDNF levels than non-caregivers. Cortisol/DHEA ratios, especially at 10 PM, were negatively related with all cognitive tasks in which caregivers showed impaired performance. On the other hand, the only cognitive task that related with the BDNF level was digit span. This study showed that caregivers' cognitive impairment is related with alterations on cortisol/DHEA ratios, and
Farran, Carol J.; Fogg, Louis G.; McCann, Judith J.; Etkin, Caryn; Dong, Xinqi; Barnes, Lisa L.
Objectives This measurement study operationalized family caregiver skill in managing behavioral symptoms associated with Alzheimer’s disease (AD) by testing a Caregiver Assessment of Behavioral Skill-Self Report measure (CAB-SR). Method A cross-sectional design was used. Caregivers had a family member with possible/probable AD, resided at home with the care recipient and provided the majority of care (N=82). The mail-administered assessment included the CAB-SR and other care recipient and caregiver measures. Results Preliminary CAB-SR reliability and validity were determined, using reliability, factor analytic and correlational procedures. Conclusion This measure provides a preliminary assessment of caregiver skill in managing behavioral symptoms of AD and shows promise for use in research and clinical intervention settings. PMID:21500018
Gray, Heather L; Jimenez, Daniel E; Cucciare, Michael A; Tong, Hui-Qi; Gallagher-Thompson, Dolores
The purpose of this study was to examine ethnic differences in female dementia family caregivers' knowledge, attitudes, and beliefs about Alzheimer disease (AD). Baseline data were collected from 215 female caregivers before their participation in various psychoeducational intervention programs. Caregivers were questioned about the epidemiology, etiology, and treatment of AD. Logistic regressions and one-way analysis of variance were conducted to assess ethnic differences. Hispanic and Chinese caregivers were more likely to believe that AD is a normal part of aging and that AD can be diagnosed by a blood test than the white group. These beliefs about AD may delay help-seeking activities for these patients and their family caregivers. Increased public education about AD is needed in these communities. Results are discussed in terms of barriers to accessing information about AD and ways to improve public informational outreach activities, so that the intended audiences are reached more effectively.
Isabela Ecker Dresch
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.
Rosell-Murphy, Magdalena; Bonet-Simó, Josep M; Baena, Esther; Prieto, Gemma; Bellerino, Eva; Solé, Francesc; Rubio, Montserrat; Krier, Ilona; Torres, Pascuala; Mimoso, Sonia
Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver.Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life. CONTROLled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT). Primary Health Care network (9 PHCTs). Primary informal caregivers of patients receiving home health care from participating PHCTs. Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support. Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.Data analysisDependent variables: Caregiver burden (short-form Zarit test), caregivers' social support (Medical Outcomes Study), and caregivers' reported quality of life (SF-12)INDEPENDENT VARIABLES: a) Caregiver: sociodemographic data
Danucalov, M. A. D.; Kozasa, E. H.; Ribas, K. T.; Galdur?z, J. C. F.; Garcia, M. C.; Verreschi, I. T. N.; Oliveira, K. C.; Romani de Oliveira, L.; Leite, J. R.
Familial caregivers of patients with Alzheimer's disease exhibit reduced quality of life and increased stress levels. the aim of this study was to investigate the effects of an 8-week yoga and compassion meditation program on the perceived stress, anxiety, depression, and salivary cortisol levels in familial caregivers. A total of 46 volunteers were randomly assigned to participate in a stress-reduction program for a 2-month period (yoga and compassion meditation program-YCMP group) (n = 25) ...
Imas Rafiyah; Wandee Suttharangsee; Hathairat Sangchan
Purpose: The aim of the study was to examine the relationship between social support and coping of family caregivers caring for persons with schizophrenia in West Java Province, Indonesia. Methods: This study used the correlational design. Eighty eight family caregivers who cared for persons with schizophrenia were recruited from the Outpatient Department of West Java Province Mental Hospital, West Java, Indonesia through purposive sampling technique. Data were collected by self-report questi...
Leow, Mabel Q H; Chan, Moon-Fai; Chan, Sally W C
Caregiving for a person with cancer at end of life can be stressful physically and emotionally. Understanding the predictors of change in family caregivers' quality of life (QoL) is important in facilitating the development of interventions to help these family caregivers. The aim of this study was to examine the change in QoL of family caregivers of home hospice patients in Singapore near the end of life with advanced cancer from baseline to after 2 months. This was a longitudinal survey. Ninety-three caregivers were surveyed. Instruments included the Caregiver Quality of Life Index-Cancer, Social Support Questionnaire, and Spiritual Perspective Scale. Caregivers' spiritual-related interactions scores increased from baseline to 2 months using paired t test (t = 2.33, P = .02). Multivariate regression analysis showed that caregivers with higher social support satisfaction (β = .60, P = .000) and who had a religion predicted (β = .55, P = .001) higher QoL. Caregivers of patients diagnosed with breast cancer and cancer in the female reproductive organs (β = -.33, P = .03) predicted lower QoL. This study elucidated the importance of caregivers' social support satisfaction during their caregiving journey. There is a need to enhance spiritual care for caregivers. Support for caregivers could be increased by organizing mutual support groups and having volunteers to befriend caregivers. Spiritual care could be enhanced by regular assessment of spiritual needs, offering open discussions and sharing on spirituality and religion, and facilitating contacts with religious groups if caregivers required.
Nilmanat, Kittikorn; Street, Annette
Facing an incurable prognosis Thai families search for a cure for AIDS using all possible means available to them. This paper reports a longitudinal narrative case study of eight family caregivers caring for a relative with AIDS in rural Southern Thailand. The paper demonstrates how the caregivers living with a person with AIDS made sense of illness episodes, and how they chose and evaluated particular treatments and care. Caregivers moved between modern medicine, traditional/folk medicine, supernatural healing rites, religious performances, and home remedies in their search for a cure. The findings indicate that a more holistic and palliative approach is needed toward AIDS care.
Heru, Alison M; Ryan, Christine E; Vlastos, Kim
This study examines the quality of life of caregivers of hospitalized relatives with mood disorders. Caregivers reported poor social, physical and emotional functioning. Family functioning was poor in the areas of roles, communication and affective involvement. It is significant that problem-solving, affective responsiveness and behavior control are within the normal range, indicating that these families do have strengths. Subjective burden but not objective burden was correlated with a poorer quality of life. Less than 30% of caregivers received help from other relatives and less than 5% sought help from outside organizations like NAMI, MDDA or VNA.
Osman, C B; Alipah, B; Tutiiryani, M D; Ainsah, O
To determine the prevalence of depressive disorders among caregivers of patients with schizophrenia, its association with patient's and caregiver's socio-demographic characteristics and family functioning. This was a cross-sectional study of caregivers of patients with schizophrenia at the outpatient clinic, Hospital Permai Johor Bahru, Malaysia. The study was conducted between August and October 2008. A total of 243 caregivers who fulfilled the inclusion criteria were enrolled, of whom 232 completed the self-administered socio-demographic questionnaire, the General Health Questionnaire (GHQ-30) and the McMaster Family Assessment Device. A total of 33 caregivers with the GHQ-30 cut-off point of 7/8 were assessed further by the Mini International Neuropsychiatric Interview to diagnose depressive disorder. The prevalence of psychological distress in our study sample was 14% (n = 33) and that of depressive disorders was 6% (n = 14). There was no association between patients' and caregivers' socio-demographic characteristics with depressive disorders, but there were significant associations between depressive disorders and family functioning dimensions in terms of Communication and Roles. Although the causal link was not established, the results suggested that depression had a significant association with family functioning among caregivers of patients with schizophrenia.
Stansfeld, Jacki; Stoner, Charlotte R; Wenborn, Jennifer; Vernooij-Dassen, Myrra; Moniz-Cook, Esme; Orrell, Martin
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.
Gaugler, Joseph E; Westra, Bonnie L; Kane, Robert L
Family caregivers of persons with dementia often require support services to help ease the challenges of providing care. Although the efficacy of some dementia caregiver interventions seems apparent, evidence indicating which types of protocols can best meet the diverse needs of individual families is not yet available. Because of this gap, families must often turn to professionals for such guidance, but it remains unknown whether professionals from different disciplines are more inclined to recommend particular types of services than others. This study assessed whether recommendations of supportive interventions to hypothetical dementia family caregivers differed by professional discipline. In a cross-sectional survey design, a convenience sample of 422 dementia care professionals across the USA viewed up to 24 randomly selected, hypothetical scenarios that systematically varied characteristics of persons with dementia and their caregivers. For each scenario, 7 possible intervention recommendations were rated. A total of 6,890 scenarios were rated and served as the unit of analysis. General linear models revealed that discipline was often a stronger predictor of how likely professionals were to recommend dementia caregiver interventions than caregiver, care recipient, or other professional characteristics. Psychotherapists tended to recommend psychoeducation more than other professionals, while those in medicine were more likely to recommend training of the person with dementia and psychotherapy. The heterogeneity in recommendations suggests that the professional source of information influences the types of support families are directed toward. Empirical evidence should inform these professional judgments to better achieve person-centered care for families.
Full Text Available Abstract Objective: The present study was to investigate the status of the family relationships of elderly patients with Alzheimer's disease from a caregiver's perspective. Methods: A total of sixteen relatives/caregivers of AD patients were assessed by applying a semi-structured questionnaire about family relationships. Frequency tables containing categorical variables (gender, schooling, personal income and current occupation were compiled. Descriptive statistics were calculated of continuous variables such as age. Answers to open questions were submitted to Bardin's content analysis. The data were held on the Epidata program and statistical analysis was performed using the SPSS v.17.0 software package. Results: In line with the literature, the family was the main source of caregivers and the typical caregiver profile was female. In contrast to other studies, emotional burnout was not a major complaint in the sample studied. The ties created among family members and the life experience of each individual influences how interviewees cope with AD. Conclusion: The family relationships of caregivers of AD patients represent a constant challenge, due to changes in roles within the family structure as well as to disease progression. However, participation in psychological and socio-educational activities run by pioneering institutions in Brazil, act as a mediator of stress in the lives of both caregivers and patients.
Gaugler, Joseph E.; Westra, Bonnie L.; Kane, Robert L.
Background Family caregivers of persons with dementia often require support services to help ease the challenges of providing care. Although the efficacy of some dementia caregiver interventions seems apparent, evidence indicating which types of protocols can best meet the diverse needs of individual families is not yet available. Because of this gap, families must often turn to professionals for such guidance, but it remains unknown whether professionals from different disciplines are more inclined to recommend particular types of services than others. This study assessed whether recommendations of supportive interventions to hypothetical dementia family caregivers differed by professional discipline. Methods In a cross-sectional survey design, a convenience sample of 422 dementia care professionals across the USA viewed up to 24 randomly selected, hypothetical scenarios that systematically varied characteristics of persons with dementia and their caregivers. For each scenario, 7 possible intervention recommendations were rated. A total of 6,890 scenarios were rated and served as the unit of analysis. Results General linear models revealed that discipline was often a stronger predictor of how likely professionals were to recommend dementia caregiver interventions than caregiver, care recipient, or other professional characteristics. Psychotherapists tended to recommend psychoeducation more than other professionals, while those in medicine were more likely to recommend training of the person with dementia and psychotherapy. Conclusions The heterogeneity in recommendations suggests that the professional source of information influences the types of support families are directed toward. Empirical evidence should inform these professional judgments to better achieve person-centered care for families. PMID:26739379
Gage-Bouchard, Elizabeth A; Devine, Katie A; Heckler, Charles E
The factors that influence caregiver coping mechanism preferences after a child's diagnosis with cancer are not fully understood. This study examines the relationship between caregivers' socio-demographic characteristics and the coping strategies they use to adapt to childhood cancer. Sixty caregivers of pediatric cancer patients completed a socio-demographic questionnaire, the Family Environment Scale, and the COPE inventory. There were no significant differences in family environment by income or education. Caregiver educational attainment was positively associated with use of planning and active coping styles, while income was not associated with caregiver coping style. Mothers were more likely than fathers to use active coping, instrumental support, religious coping, and emotional support. Men with lower education engaged in greater substance use coping and lower planning. The findings show that educational attainment and caregiver gender influence caregiver coping styles following a pediatric cancer diagnosis and suggest that educational attainment rather than financial resources drive the association between SES and coping. Programs that address educational gaps and teach caregivers planning and active coping skills may be beneficial for parents with lower educational attainment, particularly men.
Perrin, Paul B; Stevens, Lillian F; Sutter, Megan; Hubbard, Rebecca; Díaz Sosa, Dulce María; Espinosa Jove, Irma Guadalupe; Arango-Lasprilla, Juan Carlos
To examine the patterns of family dynamics that are most associated with the mental health of traumatic brain injury (TBI) caregivers from Mexico. It was hypothesized that healthier family dynamics would be associated with better caregiver mental health. A cross-sectional study of self-reported data collected from TBI caregivers through the Mexican National Institute of Rehabilitation in Mexico City, Mexico, the premier public medical facility in Mexico that provides rehabilitation services to patients with various disabilities. One public outpatient medical and rehabilitation facility. Sixty-eight caregivers of individuals with moderate-to-severe TBI from Mexico City, Mexico, were related to an individual with TBI who was ≥3 months after injury, a primary caregiver for ≥3 months, familiar with the patient's history, and without neurologic or psychiatric conditions. The average (standard deviation) age of caregivers was 50.94 ± 12.85 years), and 82% were women. The caregivers completed Spanish versions of instruments that assessed their own mental health and family dynamics. Outcomes assessed included family dynamics (Family Adaptability and Cohesion Evaluation Scale-Fourth Edition; Family Communication Scale; Family Satisfaction Scale; Family Assessment Device-General Functioning; and Relationship-Focused Coping Scale), and caregiver mental health (Patient Health Questionnaire-9, Zarit Burden Interview, and Satisfaction with Life Scale). Results of canonical correlation analyses suggested that caregiver mental health and family dynamics were positively related, with a large effect size. Caregivers with high family satisfaction and cohesion tended to have a low burden and high satisfaction with life. In addition, caregiver depression and burden were positively related to each other and were both inversely related to caregiver satisfaction with life. TBI caregiver interventions in Latino populations would likely benefit from including programming or
Gubrium, Jaber F.
Presents field data to examine family responsibility in caring for Alzheimer's disease patients. Addresses features of social comparison, issue contingency, family history, and kinship priority. Argues that qualitative analysis offers empirical lessons about family responsibility and caregiver functioning untaught by other methods. (Author)
Lee, Geok Ling; Woo, Ivan Mun Hong; Goh, Cynthia
The aim of this study was to examine the concept of a good death from the perspectives of both the dying person and the family caregiver, as perceived by bereaved family caregivers of advanced cancer patients. The data were gathered from five focus group discussions and one face-to-face qualitative interview conducted over 8 months among 18 bereaved family caregivers recruited from a local hospice. The transcripts of the focus groups and the interview were entered into NVivo Version 8 and were analyzed using the thematic approach. A good death may be understood as having the biopsychosocial and spiritual aspects of life handled well at the end of life. Five major themes were identified. These were preparation for death, family and social relationships, moments at or near death, comfort and physical care, and spiritual well-being. Differences were also noted in what is important at the end of life between the patients and caregivers. Having a quick death with little suffering was perceived to be good by the patient, but the family caregiver wanted to be able to say a final goodbye to the patient. Patients tend to prefer not to die in their children's presence but the children wished to be present for the final moment. In addition, family caregivers reported it was important for them to be able to give the patients permission to die, to feel recognized for the efforts made, and to have had a fulfilling caregiving experience. Whereas there are global attributes of a good death, our findings suggest that patients and family caregivers may define a good death differently. Therefore, there is a need to respect, address, and reconcile the differences, so that all parties may have a good experience at the end of a person's life.
Full Text Available Background: Family caregiver is the most important person who cares for patient with schizophrenia. However when care is provided for long time, he/she may experiences the burden.Purpose: The purpose was to review concept and factors related to burden on family caregivers caring for patients with schizophrenia.Method: A literatures were searched from databases: Pubmed, CINAHL, and Science Direct. Key words used to retrieve literature include caregiver burden and schizophrenia. Searching was limited in English language, full text, and the year of publication from 2000 to 2009 was used.Results: Twenty two studies were reviewed in this paper. The result showed that the caregivers caring for patients with schizophrenia experience burden. Burden was defined as a negative impact of caring for the impaired person experienced by caregiver on their activity (objective burden or feeling (subjective burden that involves emotional, physical health, social life, and financial status. Factors related to burden on family caregiver were grouped into: 1 caregiver‟s factors included age, gender, educational level, income, health status, and spent time per day, knowledge of schizophrenia, culture, and coping; 2 patient‟s factors included age, clinical symptoms, and disability in daily life; 3 environmental factors included mental health service and social support.Conclusion: Definition of burden have quite same meaning and mostly factors focus on the patient‟s symptoms, demographic factors of caregiver, and time spent per day. Most of studies cannot be generalized due to small sample used in the study and that too conducted in western countries. For further research, the correlation between burden and resources of family caregiver should be investigated particularly in eastern country.Key words: burden on family caregiver, caring, schizophrenia.
van Wijnen, Helena Gfm; Rasquin, Sascha Mc; van Heugten, Caroline M; Verbunt, Jeanine A; Moulaert, Véronique Rm
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.
Rathier, Lucille A; Davis, Jennifer Duncan; Papandonatos, George D; Grover, Christine; Tremont, Geoffrey
The degree of depression experienced by caregivers of individuals with dementia was examined in relation to religious coping strategies, religious practice, and spirituality in the framework of the stress and coping model. Caregivers of 191 persons with dementia completed the Religious Coping Scale, self-report measures of religious practices and spirituality, burden, and depression. There was no evidence that any religious coping strategy or religious practice moderated the relationship between caregiving stress and depression. Certain types of religious coping strategies had a direct effect on depression. Higher levels of religious coping working with God were associated with decreased depression, whereas higher levels of religious coping working through God were associated with increased depression. Higher burden, lower overall caregiver health rating, and worse reactions to memory and behavior problems were associated with higher levels of depression. Frequency of prayer and the importance of spirituality were weakly associated with lower levels of depression. © The Author(s) 2013.
... American men, women, and children at their most vulnerable moments, and through their devoted acts, they... severely wounded veterans from Iraq and Afghanistan. Our military caregivers exemplify the heroism found...
McMillan, Susan C; Rodriguez, Carmen; Wang, Hsiao-Lan; Elliott, Amanda
The purpose of this study was to explore issues reported by caregivers of Head and Neck cancer (HNC) patients newly admitted to hospice homecare. 26 caregivers providing hospice homecare to patients with HNC were induded. Caregiver depressive symptoms, social support and perceived health data were analyzed. The caregivers reported few depressive symptoms, good perceived social support, and good perceived health; however, there was large variation in the group with some individuals having significant problems. Caregivers appeared to be doing well physically, emotionally and socially, but baseline data were used, so follow-up data are needed. Further research is warranted. Family caregivers also are affected by the experience of cancer and may have depressive symptoms needing assessment and management. Hospice patients with HNC have a variety of symptoms specific to their disease and treatment that need assessment and management by their family caregivers. Caregivers of HNC patients in hospice and palliative care need and deserve attention from hospice providers as they care for patients.
Lin, I-Fen; Wu, Hsueh-Sheng
Past studies have extensively examined factors associated with coping strategies that caregivers use to ameliorate distress or solve problems. While these studies have found that stressors and individual resources influence choices of coping strategies, they have tended to overlook caregivers’ social resources and have rarely considered the possibility that distinct groups of caregivers may use different sets of coping strategies. We conducted latent-class analyses to identify distinct groups...
Areia, Neide P; Fonseca, Gabriela; Major, Sofia; Relvas, Ana P
The issues surrounding a patient's terminal phase of cancer and the imminent death of the individual represent a major family crisis affecting all its members. The goal of this study was to assess the prevalence of psychological morbidity in family caregivers of persons with terminal cancer in terms of psychological distress, depression, anxiety, somatization, and complicated anticipatory grief, and to determine which factors may influence these responses. One hundred and twelve family caregivers of individuals with terminal cancer completed an assessment protocol comprising the Brief Symptom Inventory (depression, anxiety, somatization, and a computed score for global distress), the Marwit-Meuser Caregiver Grief Inventory - Short Form (anticipatory grief), the Family Inventory of Needs (importance and satisfaction of needs), and the Systemic Clinical Outcome Routine Evaluation -15 (family functioning). Prevalence of psychological morbidity was determined through descriptive and frequency statistics. Predictors of psychological morbidity were ascertained through structural equation modelling methods. Result Regarding the prevalence of psychological morbidity in family caregivers, 66.1% reported high levels of distress, 68.8% showed high risk of depression, 72.3% showed high risk of anxiety, 50.9% reported high levels of somatization, and 25.9% showed high risk of complicated anticipatory grief. It was found that the predictors of age, gender, relationship to the family member with terminal cancer, the caregiving role played (i.e., primary vs. nonprimary), the satisfaction of needs by healthcare professionals, and family functioning play an important role in terms of one's risk of developing psychological morbidity. Significance of results This study revealed an alarming prevalence of psychological morbidity in family caregivers of individuals living with terminal cancer, making it crucial to move forward from a patient-centered approach to a family-centrad approach
Gláucia Sousa Oliveira
Full Text Available This is a study with the objective to know the experiences of the family caregiver of a person with intestinal ostomy due to colorectal cancer. A qualitative research, grounded on the humanization referential, made in 2013, through serialized semi-structured interviews and inductive analysis. It was approved by the Ethics and Research Committee under legal opinion no. 237,771. Seven family caregivers participated in this study in a county of southern Minas Gerais state, Brazil. Three categories emerged from the data: Relation with the disease and its treatments; Impact facing treatment and rehabilitation and Nets of support. The representation of the disease associated to finitude is reaffirmed. In order to lessen anguish and suffering, the family caregivers search support, mainly in spirituality. The impact resulting from the illness and the rehabilitation process imposes a new order to the caregivers, with personal and social renouncing, which provides a closer and more dedicated relation with the patient.
Lin, I-Fen; Wu, Hsueh-Sheng
Past studies have extensively examined factors associated with coping strategies that caregivers use to ameliorate distress or solve problems. While these studies have found that stressors and individual resources influence choices of coping strategies, they have tended to overlook caregivers' social resources and have rarely considered the possibility that distinct groups of caregivers may use different sets of coping strategies. We conducted latent-class analyses to identify distinct groups of caregivers: those using no particular patterns of coping (unpatterned-coping), those centering on ameliorating distress (emotional-coping), and those focusing on both ameliorating distress and solving problems (hybrid-coping). Stressors distinguished all three coping groups, individual resources differentiated the hybrid-coping group from the emotional-coping group and the unpatterned-coping group, and social resources separated the emotional-coping group and the hybrid-coping group from the unpatterned-coping group. These findings indicate different factors contributing to caregivers' use of different coping styles and suggest ways to better help caregivers. © The Author(s) 2013.
Chung, Misook L; Lennie, Terry A; Mudd-Martin, Gia; Dunbar, Sandra B; Pressler, Susan J; Moser, Debra K
Depressive symptoms in people with heart failure (HF) are highly prevalent. Caring for patients with both HF and depression may be more burdensome than caring for patients with HF alone. The purpose of this study was to examine differences in caregivers' outcomes (i.e. caregiving burden, difficulty and time spent on caregiving, perceptions of life change as a result of caregiving, and quality of life) between caregivers who take care of HF patients with depressive symptoms and without depressive symptoms. Patient-caregiver dyads at an outpatient clinic completed survey questionnaires. Patients' depression was assessed using the Beck Depression Inventory-II (BDI-II); primary caregivers completed caregiving outcome questionnaires. Differences in caregiving outcomes between patients with and without depressive symptoms (BDI-II≥14) were examined using t-tests, Chi-square, and Mann-Whitney U-test. Of 102 patients (64% male, mean age 61, 41% NYHA Class III-IV, mean ejection fraction 35.8±13.9), 26.5% had clinically significant depressive symptoms. Of the primary caregivers (78% female; mean age 56.7), 42% reported severe burden (the Zarit Burden Interview (ZBI)≥17). Caregivers of patients with depressive symptoms had a higher level of burden (25±13 vs 13.5±12 on the ZBI; pquality of life (46±10 vs 51±10 on the SF-12v2; p=0.026) than those of patients without depressive symptoms. Family members caring for HF patients with depressive symptoms had significantly higher levels of caregiving burden and worse quality of life compared to those caring for patients without depressive symptoms. © The European Society of Cardiology 2014.
McCabe, Marita; You, Emily; Tatangelo, Gemma
The number of Australians living with dementia is expected to increase from currently 332,000 to 900,000 by 2050. Around 200,000 unpaid caregivers are caring for community-dwelling people living with dementia, and therefore, supporting the caregivers' needs is of paramount importance. The aim of this systematic review was to understand the perceived needs of immediate family caregivers of community-dwelling older adults with dementia. We examined qualitative studies that reported on the self-perceived needs of partner and/or offspring caregivers who were caring for community-dwelling older adults with dementia. Two themes were developed from 12 studies: caregiver needs related to the management of older people with dementia and caregivers' personal needs. The first theme further included four subthemes: information and knowledge needs; activities of daily living, instrumental activities of daily living and Behavioural and Psychological Symptoms of Dementia support needs; formal care support needs; and informal care support needs. The second theme consisted of two subthemes: the need to address caregivers' physical and psychological health and the need to manage caregivers' own lives. The findings have important implications for the development of interventions that comprehensively address caregivers' individual needs. Caregivers' unmet needs highlight key areas for improvement in policy and service provision. The findings demonstrate the need for more rigorous qualitative studies exploring the perceived needs of partner and offspring caregivers respectively. Furthermore, examining the underlying relationships between different caregiver needs is warranted. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: email@example.com.
Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita
The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia.
Clendon, Jill; Walker, Léonie
To examine the dual caregiving and nursing responsibilities of nurses in New Zealand with a view to identifying potential strategies, policies and employment practices that may help to retain nurses with caregiving responsibilities in the workplace. As the nursing workforce ages, child-bearing is delayed and older family members are living longer, family caregiving responsibilities are impacting more on the working life of nurses. This may complicate accurate workforce planning assumptions. An explorative, descriptive design using interviews and focus groups with 28 registered nurses with family caregiving responsibilities. A depth of (largely hidden) experience was exposed revealing considerable guilt, physical, emotional and financial hardship. Regardless of whether the nurse chose to work or had to for financial reasons, family always came first. Demographic and societal changes related to caregiving may have profound implications for nursing. Workplace support is essential to ensure that nurses are able to continue to work. Increased awareness, support, flexibility and specific planning are required to retain nurses with family caregiving responsibilities. © 2016 John Wiley & Sons Ltd.
Roper, Susanne Olsen; Allred, Diane W; Mandleco, Barbara; Freeborn, Donna; Dyches, Tina
Using family systems theory as a theoretical framework, we investigated direct and indirect associations between type of disability, caregiver burden, and sibling relationships with structural equation modeling. We recruited 172 families raising typically developing children or a child with a disability. Participants volunteered at meetings and workshops for families of children with disabilities and were also recruited through snowball sampling. Mothers and fathers independently completed self-report questionnaires on caregiver burden and perceptions of the sibling relationship. Mothers experienced higher levels of caregiver burden than fathers. Parents of children with autism reported higher levels of caregiver burden than parents of typically developing children. Mothers of children with Down syndrome and multiple disabilities reported more positive sibling relationships than mothers of typically developing children. Mothers' and fathers' perceptions of caregiver burden were negatively related to their perceptions of the sibling relationship. Caregiver burden mediated the relationship between having a child with autism and positive sibling relationships. Results indicate the benefits of using a systems framework in examining families raising children with disabilities. Future research should focus on interventions for families of children with disabilities that help alleviate parental burden and foster positive sibling relationships.
Sakka, Mariko; Sato, Iori; Ikeda, Mari; Hashizume, Hirofumi; Uemori, Masayo; Kamibeppu, Kiyoko
We examined the differences in family-to-work spillover between employed women who did and did not have caregiving responsibilities for elderly parents and the relationship between family-to-work spillover and negative and positive appraisals of caregiving using moderation analysis. A cross-sectional survey was conducted with middle-aged employed women (age ≥40 years) from four large companies. Negative and positive family-to-work spillover (FWNS and FWPS, respectively) and negative and positive appraisals of caregiving were measured. Data from 386 non-caregivers and 82 caregivers were analyzed using Fisher's exact tests, Welch's t-tests, and hierarchical multiple regression. Results showed that FWNS was higher in caregivers than in non-caregivers, while there was no significant difference in FWPS. Caregiver "fulfillment from the caregiving role" (a subscale of positive appraisal) buffered the effects of caregiver "feelings of social restriction" (a subscale of negative appraisal) on FWNS. On the other hand, caregiver "commitment to caregiving tasks" (another positive subscale) intensified the effects of "feelings of social restriction" on FWNS. However, there was no relationship between negative and positive appraisals of caregiving and FWPS. These findings suggest that both negative and positive appraisals of caregiving are important contributors to FWNS among employed women caring for their parents.
Oh, Juyeon; Kim, Jung A
The Zarit Burden Interview has been used in many studies to assess caregiver burden in family caregivers of patients with amyotrophic lateral sclerosis, but the factor structure of the Zarit Burden Interview in the caregivers of amyotrophic lateral sclerosis patients is unknown. The aim of this study was to explore the factor structure of the Zarit Burden Interview in family caregivers of amyotrophic lateral sclerosis patients using exploratory factor analysis. The exploratory factor analysis was performed using generalized least squares with oblique rotation in a sample of 202 family caregivers. Three factors had an eigenvalue greater than 1 and accounted for 60.33% of the total variance. The three factors were named as follows: (factor 1) "Social restrictions" (items 2, 3, and 10-15); (factor 2) "Self-criticism" (items 20-21); and (factor 3) "Anger and frustration" (items 1, 4-6, 9, and 16-19). The correlation between factors 1 and 3 was much higher (r = 0.79) than that between factors 1 and 2 (r = 0.14) or factors 2 and 3 (r = 0.15). The findings of this study enriched our understanding of several meaningful dimensions of the caregiving burden in caregivers of an amyotrophic lateral sclerosis population and provided opportunities for future intervention.
Bull, Margaret J; Boaz, Lesley; Maadooliat, Mehdi; Hagle, Mary E; Gettrust, Lynn; Greene, Maureen T; Holmes, Sue Baird; Saczynski, Jane S
To test the feasibility of a telephone-based intervention that prepares family caregivers to recognize delirium symptoms and how to communicate their observations to healthcare providers. Mixed-method, pre-post quasi-experimental design. A Midwest Veterans Affairs Medical Center and a nonprofit health system. Forty-one family caregiver-older adult dyads provided consent; 34 completed the intervention. Four telephone-based education modules using vignettes were completed during the 3 weeks before the older adult's hospital admission for elective hip or knee replacement. Each module required 20 to 30 minutes. Interviews were conducted before the intervention and 2 weeks and 2 months after the older adult's hospitalization. A researcher completed the Confusion Assessment Method (CAM) and a family caregiver completed the Family Version of the Confusion Assessment Method (FAM-CAM) 2 days after surgery to assess the older adults for delirium symptoms. Family caregivers' knowledge of delirium symptoms improved significantly from before the intervention to 2 weeks after the intervention and was maintained after the older adult's hospitalization. They also were able to recognize the presence and absence of delirium symptoms in the vignettes included in the intervention and in the older adult after surgery. In 94% of the cases, the family caregiver rating on the FAM-CAM approximately 2 days after the older adult's surgery agreed with the researcher rating on the CAM. Family caregivers expressed satisfaction with the intervention and stated that the information was helpful. Delivery of a telephone-based intervention appears feasible. All family caregivers who began the program completed the four education modules. Future studies evaluating the effectiveness of the educational program should include a control group. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.
Blanche, Erna Imperatore; Diaz, Jesus; Barretto, Tanya; Cermak, Sharon A
Prior research has documented caregiving difficulties in families of children with autism spectrum disorder (ASD). However, Latino families may encounter unique challenges. The purpose of this study was to understand the caregiving experiences of Latino families with children with ASD, including daily activities, coping strategies, and service utilization. Fifteen Latino parents of children with ASD were interviewed. The interviews were transcribed for analysis to identify themes of experiences unique to this population. Latino families of children with ASD encounter many similar issues as non-Latino families but also unique issues that affect service utilization. Four themes were identified: dealing with the diagnosis, dealing with stigma and isolation from family and community, understanding the role of mothers in changing family routines, and utilizing services. To meet the unique needs of Latino families, services need to be provided in culturally sensitive context that address children's needs within family units. Copyright © 2015 by the American Occupational Therapy Association, Inc.
Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve
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.
Cuéllar-Flores, Isabel; Sánchez-López, M Pilar; Limiñana-Gras, Rosa María; Colodro-Conde, Lucía
This study examined the utility of the 12-item General Health Questionnaire (GHQ-12) to assess the psychological distress of family caregivers. To accomplish this goal, a sample of 172 caregivers, 25 men and 147 women, aged 56.6 (SD = 13.7) completed self-report questionnaires and provided data on demographic factors. Univariate and bivariate models adjust adequately, although the two-factor model (anxiety/depression and social dysfunction) presented a better fit. Relative caregivers scored higher in psychological distress (anxiety and depression levels) on the GHQ-12 than did the normal population. In conclusion, the GHQ-12 is a sensitive instrument to detect the presence of anxiety and depression in relative caregivers, and the external validity of the instrument is generally adequate. The GHQ-12 seems particularly appropriate for research and clinical and health intervention in caregivers. Implications and limitations of these results are discussed, along with suggestions for future research.
Ducharme, Francine; Lachance, Lise; Kergoat, Marie-Jeanne; Coulombe, Renée; Antoine, Pascal; Pasquier, Florence
Characteristics of early- and late-onset dementia family caregivers were described and compared. Based on a theoretical model of role transition, data were collected through structured interviews from 48 caregivers of adults with Alzheimer's disease or a related dementia older than the age of 70 and 48 caregivers of similarly diagnosed adults younger than the age of 60. A significantly higher proportion of caregivers of younger adults were spouses and gainfully employed compared with those of older adults; they had more years of schooling, took care of a person with more severe impairments, received more help, perceived themselves as better prepared to deal with future needs, and better informed about services. They did not differ from caregivers of older adults in terms of psychological distress, role confidence, self-efficacy, and social support. This study highlights differences and similarities to be considered in the development of services tailored to the specific needs of each group. © The Author(s) 2015.
Dahlrup, Beth; Nordell, Eva; Steen Carlsson, Katarina; Elmståhl, Sölve
Psychosocial intervention has shown positive effects on the caregivers' burden and satisfaction. The aims of this study were to describe the cost and cost-effectiveness of such an intervention. We analyzed resource use and costs of formal care for 308 persons with dementia and their caregivers' health-related quality of life (HRQoL). The costs of home help services were lower in the subgroup of spouse caregivers in the intervention group and the cost of nursing home placement was lower in the intervention group. While the person with dementia lived at home, caregivers in the intervention group reported a higher HRQoL (p dementia had moved to a nursing home, spouses in the control group had a lower HRQoL (p intervention focusing on the identified specific needs of the family caregivers.
Karlijn J Joling
Full Text Available Family caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients.A randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n = 96 or usual care (n = 96 condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes, caregiver burden and quality of life (secondary outcomes. Intention-to-treat as well as per protocol analyses were performed.A substantial number of caregivers (72/192 developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38 or in reducing depressive (randomization-by-time interaction coefficient = -1.40; 95% CI -3.91 to 1.10 or anxiety symptoms (randomization-by-time interaction coefficient = -0.55; 95% CI -1.59 to 0.49. The intervention did not reduce caregiver burden or their health related quality of life.This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial
Ran, Mao-Sheng; Chui, Cheryl H K; Wong, Irene Yin-Ling; Mao, Wen-Jun; Lin, Fu-Rong; Liu, Bo; Chan, Cecilia Lai-Wan
This study examined the differences in 14-year outcomes of persons with schizophrenia with and without family caregiver(s) in a rural community in China. All participants with schizophrenia (n = 510) aged 15 years and older were identified in a 1994 epidemiological investigation of 123,572 people and followed up in 2004 and 2008 in Xinjin County, Chengdu, China. Individuals without family caregiver in 1994 had significantly higher rate of homelessness (23.8 %) and lower rate of survival (47.5 %) in 2008 than those with family caregivers (5.1 and 70.9 %). Compared with individuals with family caregivers, those without family caregivers were more likely to be male, live alone, have fewer family members, lower family economic status, lower rates of marriage and complete remission, higher mean scores on PANSS and lower mean score on GAF in 2008. The predictors of participants without family caregiver in 2008 included having a small number of family members at baseline and being male. The absence of a family caregiver is a predictive factor of poorer long-term outcome of persons with schizophrenia in the rural community. The critical role of family caregiving should be incorporated in the planning and delivering of mental health policies and community-based mental health services.
Lee, Jung-Ah; Nguyen, Hannah; Park, Joan; Tran, Linh; Nguyen, Trang; Huynh, Yen
Families of ethnic minority persons with dementia often seek help at later stages of the disease. Little is known about the effectiveness of various methods in supporting ethnic minority dementia patients' caregivers. The objective of the study was to identify smartphone and computer usage among family caregivers of dementia patients (i.e., Korean and Vietnamese Americans) to develop dementia-care education programs for them. Participants were asked various questions related to their computer or smartphone usage in conjunction with needs-assessment interviews. Flyers were distributed at two ethnic minority community centers in Southern California. Snowball recruitment was also utilized to reach out to the families of dementia patients dwelling in the community. Thirty-five family caregivers, including 20 Vietnamese and 15 Korean individuals, participated in this survey. Thirty participants (30 of 35, 85.7%) were computer users. Among those, 76.7% (23 of 30) reported daily usage and 53% (16 of 30) claimed to use social media. A majority of the participants (31 of 35, 88.6%) reported that they owned smartphones. More than half of smartphone users (18 of 29, 62%) claimed to use social media applications. Many participants claimed that they could not attend in-class education due to caregiving and/or transportation issues. Most family caregivers of dementia patients use smartphones more often than computers, and more than half of those caregivers communicate with others through social media apps. A smartphone-app-based caregiver intervention may serve as a more effective approach compared to the conventional in-class method. Multiple modalities for the development of caregiver interventions should be considered.
Scribner, Ben; Lynn, Joanne; Walker, Victoria; Morgan, Les; Montgomery, Anne; Blair, Elizabeth; Baird, Davis; Goldschmidt, Barbara; Kirschenbaum, Naomi
Policymakers have been slow to support family caregivers, and political agendas mostly fail to address the cost burdens, impact on employment and productivity, and other challenges in taking on long-term care tasks. This project set out to raise policymakers' awareness of family caregivers through proposals to Republican and Democratic party platforms during the 2016 political season. The Family Caregiver Platform Project (FCPP) reviewed the state party platform submission process for Democratic and Republican parties in all 50 states and the District of Columbia. We built a website to make each process understandable by caregiver advocates. We designed model submissions to help volunteers tailor a proposal and recruited caregiver advocates participating in their state process. Finally, we mobilized a ground operation in many states and followed the progress of submissions in each state, as well as the formation of the national platforms. In 39 states, at least one party, Republican or Democrat, hosted a state party platform process. As of September 2016 FCPP volunteers submitted proposals to 29 state parties in 22 states. Family caregiver language was added to eight state party platforms, one state party resolution, two bipartisan legislative resolutions, and one national party platform. The FCPP generated a non-partisan grassroots effort to educate and motivate policymakers to address caregiving issues and solutions. Democratic party leaders provided more opportunities to connect with political leaders, with seven Democratic parties and one Republican party, addressing family caregiver issues in their party platforms. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.
Lau, Denys T; Kasper, Judith D; Hauser, Joshua M; Berdes, Celia; Chang, Chih-Hung; Berman, Rebecca L; Masin-Peters, Jonathan; Paice, Judith; Emanuel, Linda
To propose a theoretical construct of family caregiver skills in effective medication management for home hospice patients. Semistructured face-to-face interviews were conducted with 22 hospice providers (14 nurses, 4 physicians, and 4 social workers) and 23 family caregivers (10 daughters, 4 wives, 2 husbands, and 7 others) of elderly patients (>or=60 years old) who were receiving home services from four hospice care programs in the Chicago metropolitan area. Although both groups identified similar skill sets, hospice providers emphasized technical skills such as administering medications, and family caregivers valued management skills such as organizing medications, coordinating with hired caregivers, and providing care to patients who resisted treatment. We defined effective medication management in hospice as caregivers' ability to effectively relieve symptoms with pharmacological interventions by successfully utilizing skills related to teamwork (coordinate with hospice providers and with other family or hired caregivers), organization (acquire, store, track, and discard medications), symptom knowledge (recognize and interpret common symptoms), medication knowledge (understand the basics of pharmacology and medication administration), and personhood (understand and respond to the patient's needs). The proposed construct of medication management skills in hospice will help guide future development of training interventions and clinical assessment tools.
Saban, Karen L; Sherwood, Paula R; DeVon, Holli A; Hynes, Denise M
Studies have demonstrated that the stress of family caregiving places caregivers at risk for developing depression, poor quality of life, and health problems. The purpose of this review was to identify the ways in which variables are operationalized in studies addressing psychological stressors and physical health of family caregivers of stroke survivors. The adapted Pittsburgh Mind-Body Center model provides the organizing conceptual framework for this literature review. A literature search for relevant articles was conducted using Ovid Medline, PsycINFO, and Ovid Nursing Database for the period of July 1999 through June 2009 using the following search terms: caregiver (or family caregiver), stroke, stress, and health. Articles were included if they met the following inclusionary criteria: (a) written in English, (b) published in peer-reviewed journal, (c) focused on adults who were caring for an adult who experienced stroke, (d) included measures of stress and physical health or health-related quality of life, and (e) primarily used quantitative research methods. Twenty-four articles were identified that met the inclusion criteria. Findings related to the variables included in the adapted Pittsburgh Mind-Body Center model are discussed. Variables were not well defined, a wide array of measurement instruments were used, and measures were taken at broadly divergent time frames following stroke. Future research guided by a theoretical framework, consistent measures of variables, and standardized measurement time points would allow for better comparison of findings across studies, thus enabling clinicians to better understand the health risks of family caregivers.
Schumacher, Karen L; Plano Clark, Vicki L; West, Claudia M; Dodd, Marylin J; Rabow, Michael W; Miaskowski, Christine
Oncology patients with persistent pain treated in outpatient settings and their family caregivers have significant responsibility for managing pain medications. However, little is known about their practical day-to-day experiences with pain medication management. The aim was to describe day-to-day pain medication management from the perspectives of oncology outpatients and their family caregivers who participated in a randomized clinical trial of a psychoeducational intervention called the Pro-Self(©) Plus Pain Control Program. In this article, we focus on pain medication management by patients and family caregivers in the context of multiple complex health systems. We qualitatively analyzed audio-recorded intervention sessions that included extensive dialogue between patients, family caregivers, and nurses about pain medication management during the 10-week intervention. The health systems context for pain medication management included multiple complex systems for clinical care, reimbursement, and regulation of analgesic prescriptions. Pain medication management processes particularly relevant to this context were getting prescriptions and obtaining medications. Responsibilities that fell primarily to patients and family caregivers included facilitating communication and coordination among multiple clinicians, overcoming barriers to access, and serving as a final safety checkpoint. Significant effort was required of patients and family caregivers to insure safe and effective pain medication management. Health systems issues related to access to needed analgesics, medication safety in outpatient settings, and the effort expended by oncology patients and their family caregivers require more attention in future research and health-care reform initiatives. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Geddie, Patricia I; Wochna Loerzel, Victoria; Norris, Anne E
To explore factors related to unplanned hospital admissions and determine if one or more factors are predictive of unplanned hospital admissions for older adults with cancer. . A prospective longitudinal design and a retrospective chart review. . Adult oncology outpatient infusion centers and inpatient units at Orlando Regional Medical Center in Florida. . A convenience sample of 129 dyads of older adults with cancer and their family caregivers. . Family caregiver demographic and side effect knowledge data were collected prospectively during interviews with family caregivers using a newly developed tool, the Nurse Assessment of Family Caregiver Knowledge and Action Tool. Patient demographic and clinical data were obtained through a retrospective chart review. Descriptive statistics and logistic regression analyses were used to evaluate data and examine relationships among variables. . Patient illness characteristics; impaired function; side effects, such as infection, fever, vomiting, and diarrhea; family caregiver knowledge; and unplanned hospital admissions. . Unplanned hospital admissions were more likely to occur when older adults had impaired function and side effects, such as infection, fever, vomiting, and diarrhea. Impaired function and family caregiver knowledge did not moderate the effects of these side effects on unplanned hospital admissions. . Findings suggest that the presence of impaired function and side effects, such as infection, fever, vomiting, and diarrhea, predict unplanned hospital admissions in older adults with cancer during the active treatment phase. Side effects may or may not be related to chemotherapy and may be related to preexisting comorbidities. . Nurses can conduct targeted assessments to identify older adults and their family caregivers who will need additional follow-up and support during the cancer treatment trajectory. Information gained from these assessments will assist nurses to provide practical and
Hong, Min Joo; Tae, Young Sook
The purpose of this study was to construct a structural equational model to explain and predict burnout in family caregivers of patients with cancer. The study was based on the Stress-Appraisal-Coping Model of Lazarus and Folkman (1984) and Family Stress Theory (Hill, 1958). Data were collected from July 10 to September 30, 2012 through direct interviews and a self-report questionnaire survey. Participants in this study were 206 family caregivers providing care for patients with cancer in In-patient or Out-patient departments of three different general hospitals located in Busan. Measured variables were exogenous variables (social support and perceived health status) and endogenous variables (perceived stress, hope and burnout). Goodness of fit in the hypothetical model was χ²=174.07, TLI=.95, CFI=.97, RMSEA=.08. Perceived health status, perceived stress, and hope showed statistically significant direct effects on burnout of family caregivers. Social support affected burnout of family caregivers indirectly. These variables explained 68.5% of total variance in burnout. The results from this study suggest that perceived stress, perceived health status, and hope should be considered as major influential factors when developing nursing interventions to control burnout of family caregivers (of patients with cancer).
Karlijn J Joling
Full Text Available BACKGROUND: Interventions relieving the burden of caregiving may postpone or prevent patient institutionalization. The objective of this study was to determine whether a family meetings intervention was superior to usual care in postponing nursing home placement of patients with dementia. METHODS: A randomized multicenter trial was conducted among 192 patients with a clinical diagnosis of dementia living at home at enrolment and their primary family caregiver. Dyads of caregivers and patients were randomized to the family meetings intervention (n = 96 or usual care (n = 96 condition. The intervention consisted of two individual sessions with the primary caregiver and four family counseling sessions that included family members and friends. The primary outcome measure was the time until institutionalization of the patient. Intention-to-treat as well as per protocol analyses were performed. Survival analyses were carried out to evaluate the effectiveness of the intervention. RESULTS: During 18 months follow-up 23 of 96 relatives with dementia of caregivers in the intervention group and 18 of 96 relatives with dementia of caregivers in the usual care group were institutionalized. No significant difference between the intervention and the usual care group was found in time until institutionalization (adjusted hazard ratio (HR 1.46, 95% confidence interval (CI 0.78 to 2.74. The per-protocol analysis revealed no significant effect either (adjusted HR 0.57, 95% CI 0.21 to 1.57, although the number of placements among the adherers was relatively low (9.4%. A subgroup effect was found for patients' age, with a significantly higher risk of institutionalization for 'younger' patients in the intervention group compared with the usual care group (adjusted HR = 4.94, 95% CI 1.10 to 22.13. CONCLUSION: This family meetings intervention for primary caregivers of patients with dementia did not postpone patient institutionalization more than usual care. TRIAL
Joling, Karlijn J; van Marwijk, Harm W J; van der Horst, Henriëtte E; Scheltens, Philip; van de Ven, Peter M; Appels, Bregje A; van Hout, Hein P J
Interventions relieving the burden of caregiving may postpone or prevent patient institutionalization. The objective of this study was to determine whether a family meetings intervention was superior to usual care in postponing nursing home placement of patients with dementia. A randomized multicenter trial was conducted among 192 patients with a clinical diagnosis of dementia living at home at enrolment and their primary family caregiver. Dyads of caregivers and patients were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions with the primary caregiver and four family counseling sessions that included family members and friends. The primary outcome measure was the time until institutionalization of the patient. Intention-to-treat as well as per protocol analyses were performed. Survival analyses were carried out to evaluate the effectiveness of the intervention. During 18 months follow-up 23 of 96 relatives with dementia of caregivers in the intervention group and 18 of 96 relatives with dementia of caregivers in the usual care group were institutionalized. No significant difference between the intervention and the usual care group was found in time until institutionalization (adjusted hazard ratio (HR) 1.46, 95% confidence interval (CI) 0.78 to 2.74). The per-protocol analysis revealed no significant effect either (adjusted HR 0.57, 95% CI 0.21 to 1.57), although the number of placements among the adherers was relatively low (9.4%). A subgroup effect was found for patients' age, with a significantly higher risk of institutionalization for 'younger' patients in the intervention group compared with the usual care group (adjusted HR = 4.94, 95% CI 1.10 to 22.13). This family meetings intervention for primary caregivers of patients with dementia did not postpone patient institutionalization more than usual care. CONTROLLED-TRIALS.COM ISRCTN90163486.
Pot, Anne Margriet; Blom, Marco M; Willemse, Bernadette M
The number of people with dementia is increasing rapidly. Providing care to a relative or friend with dementia may lead to serious mental health problems. Internet interventions may offer opportunities to improve the availability and accessibility of (cost)effective interventions to reduce family caregivers' psychological distress. This study describes the acceptability of a guided self-help Internet intervention "mastery over dementia" (MoD), aimed at reducing caregivers' psychological distress, in terms of reach, adherence and user evaluation. The sample for this study is the experimental group that participated in the (cost)effectiveness trial of MoD (N = 149). Data on characteristics of family caregivers and people with dementia, completion and user evaluation were used and analyzed with descriptive statistics, χ2and T-tests. MoD reaches a wide variety of caregivers, also those aged 75+, having a relative with a recent diagnosis of dementia or living in a care home. However, the percentage of caregivers who did not complete all eight lessons was rather high (55.7%). Among the completers (N = 66; 44.3%) were significantly more spouses, caregivers living in the same household, older caregivers, and those caring for somebody with another formal diagnosis than Alzheimer's disease. Caregivers' evaluation showed that females rated higher on the comprehensibility of the lessons and feedback and spent less time on the lessons. The guided self-help Internet intervention MoD is acceptable for a broad range of family caregivers of people with dementia. The next step is to substantiate its (cost)effectiveness.
MacDougall, Megan; Steffen, Ann
Self-efficacy for controlling upsetting thoughts was examined as a predictor of emotional eating by family caregivers of physically and cognitively impaired older adults. Adult women (N = 158) providing healthcare assistance for an older family member completed an online survey about caregiving stressors, depressive symptoms, self-efficacy, and emotional eating. A stress process framework was used as a conceptual model to guide selection of variables predicting emotional eating scores. A hierarchical multiple regression was conducted and the overall model was significant (R 2 = .21, F(4,153) = 10.02, p accounting for IADL, role overload, and depression scores. These findings replicate previous research demonstrating the relationship between managing cognitions about caregiving and behavioral responses to stressors, and point to the importance of addressing cognitive processes in efforts to improve caregiver health behaviors.
Gray, Heather L.; Jimenez, Daniel E.; Cucciare, Michael A.; Tong, Hui-Qi; Gallagher-Thompson, Dolores
Objective The purpose of this study was to examine ethnic differences in female dementia family caregivers’ knowledge, attitudes, and beliefs about Alzheimer disease (AD). Methods Baseline data were collected from 215 female caregivers before their participation in various psychoeducational intervention programs. Caregivers were questioned about the epidemiology, etiology, and treatment of AD. Logistic regressions and one-way analysis of variance were conducted to assess ethnic differences. Results Hispanic and Chinese caregivers were more likely to believe that AD is a normal part of aging and that AD can be diagnosed by a blood test than the white group. These beliefs about AD may delay help-seeking activities for these patients and their family caregivers. Conclusion Increased public education about AD is needed in these communities. Results are discussed in terms of barriers to accessing information about AD and ways to improve public informational outreach activities, so that the intended audiences are reached more effectively. PMID:20104051
Awadalla, Abdel W; Ohaeri, Jude U; Tawfiq, Adel M; Al-Awadi, Shafika A
There is a paucity of studies on comparison of quality of life (QOL) of type-1 and type-2 diabetes patients, and the impact of family caregivers' impressions on the QOL of patients. To assess the subjective QOL of Sudanese diabetics using the WHOQOL-Bref, compared with a general population sample; examine caregiver-patient concordance; and assess the variables that impact on QOL. The responses of 105 outpatients with type-1 diabetes and 136 with type-2 diabetes were compared with their family caregivers' impressions and 139 general population subjects. Patients were predominantly dissatisfied with their life circumstances. Type-1 diabetics had significantly lowest QOL scores, while the control group had highest scores. Having additional medical problems; having diminished sexual desire; and being young, unemployed and single were associated with poor QOL, but illness duration was not. Type-2 diabetics had lesser concordance with caregivers. The only predictor of patients' QOL was the caregivers' impression of patients' QOL. Caregivers' impression of patients' QOL impacted on outcome. Caregiver education is, therefore, important. The factors associated with QOL indicate a group that needs focused attention. The good QOL for type-2 and nonsignificance of illness duration encourage therapeutic optimism.
van Gennip, Isis E.; Pasman, H. Roeline W.; Kaspers, Pam J.; Oosterveld-Vlug, Mariska G.; Willems, Dick L.; Deeg, Dorly J. H.; Onwuteaka-Philipsen, Bregje D.
Death with dignity has been identified as important both to patients and their surviving family. While research results have been published on what patients themselves believe may affect the dignity of their deaths, little is known about what family caregivers consider to be a dignified death. (1)
Kidd, Lori I; Zauszniewski, Jaclene A; Morris, Diana L
This pilot clinical trial tested effectiveness of a poetry writing intervention for family caregivers of elders with dementia. This paper presents findings from a larger study using mixed methods to examine outcome variables of self-transcendence, resilience, depressive symptoms, and subjective caregiver burden. Findings reported here focus on qualitative analysis of in-depth interviews conducted with participants following their poetry writing experience. A grounded theory approach was used. Themes that arose from the data support a mid-range theory of self-affirmation in caregivers with subthemes of achievement, catharsis, greater acceptance, empathy, self-awareness, reflection, creative and fun, positive challenge, and helping others.
Katz-Saltzman, Shiri; Biegel, David E.; Townsend, Aloen
This cross-sectional study utilized a stress-process model to examine the impact of caregivers' (N = 82) perceptions of their relationship quality with a female family member (i.e., care-recipient) with substance-use or co-occurring substance and mental disorders on caregivers' perceived burden. Regression findings indicate that relationship…
Koenig Kellas, Jody; Castle, Katherine M.; Johnson, Alexis; Cohen, Marlene Z.
(1) Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines the bright and dark sides of how hope is communicated across the cancer journey from the vantage point of bereaved family caregivers; (2) Methods: We analyzed interviews with bereaved family caregivers using qualita...
Lee, Regina L T; Mok, Esther S B
To explore the coping strategies of Chinese family caregivers of stroke-impaired older relatives. Many stroke-impaired patients rely heavily on support from their families, and the daily lives of such family caregivers are severely impacted. However, services and support for family caregivers of stroke-impaired relatives in the home setting have received little attention. Appropriate and relevant information and support to family caregivers are important in facilitating the care-giving task. It is, therefore, necessary to understand the nature and demands of care-giving before planning specific educational and support programmes. Grounded theory. Fifteen Chinese family caregivers of stroke-impaired older relatives were recruited and interviewed in 2003 and 2004. Theoretical sampling and constant comparative analysis were used to recruit the sample and perform data analysis. Seeking harmony to provide care for the stroke-impaired was the core category for describing and guiding the family care-giving process, with five main stages: (1) living with ambiguity, (2) monitoring the recovery progress, (3) accepting the downfalls, (4) meeting family obligations and (5) reconciling with harmony. These issues were seldom discussed openly with health professionals. The findings indicated that Chinese family caregivers determine their own needs by seeking harmony to continue to provide care without thinking about getting help from others or their own health problems. These findings help to define some of the complex dynamics that have an impact on the development of partnership care and might challenge nurses practising in the community. Community nurses should assess and understand the coping strategies of family caregivers and assist them to engage in stress-reducing practices. This is an important partnership to be formed in stroke care for family caregivers in the community. The study findings will guide further development of family care-giving aspects in nursing practice
Luana Machado Andrade
Full Text Available The perception of family caregivers of people with Alzheimer's disease on the family support for the received care, under the light of the phenomenology of Maurice Merleau-Ponty, it was revealed by responses to semi-structured interviews and by depositions in the focus group meetings with ten of them, members of a Mutual Help Group, carried out from September 2009 to June 2010. The study suggests a new understanding of family support to the care, which opens the possibility of transcendence from the caregiver into another self.
Brown, Melissa; Pitt-Catsouphes, Marcie
Many workers can expect to provide care to an elder relative at some point during their tenure in the workforce. This study extends previous research by exploring whether caregiving frequency (providing care on a regular, weekly basis vs. intermittently) moderates the relationship between certain workplace characteristics and work-to-family conflict. Utilizing a sample of 465 respondents from the National Study of the Changing Workforce (Families and Work Institute, 2008), results indicate that access to workplace flexibility has a stronger effect on reducing work-to-family conflict among intermittent caregivers than among those who provide care regularly.
Pot, A.M.; Blom, M.M.; Willemse, B.M.
Background: The number of people with dementia is increasing rapidly. Providing care to a relative or friend with dementia may lead to serious mental health problems. Internet interventions may offer opportunities to improve the availability and accessibility of (cost)effective interventions to reduce family caregivers' psychological distress. This study describes the acceptability of a guided self-help Internet intervention "mastery over dementia" (MoD), aimed at reducing caregivers' psychol...
Powell, Douglas R.
This article is excerpted from "Who's Watching the Babies? Improving the Quality of Family, Friend, and Neighbor Care" by Douglas R. Powell ("ZERO TO THREE," 2008). The article explores questions about program development and implementation strategies for supporting Family, Friend, and Neighbor (FFN) caregivers: How do programs and their host…
Putnam, Michelle; Pickard, Joseph G.; Rodriguez, Carroll; Shear, Erin
Persons with dementia are often excluded from consumer-directed home- and community-based service programs because they cannot direct their own care. Surrogates are permitted in some states, thereby allowing program participation. This study explored family caregiver perspectives on policies that support family needs related to providing care to…
Urbanowicz, Anna; Downs, Jenny; Bebbington, Ami; Jacoby, Peter; Girdler, Sonya; Leonard, Helen
This study assessed factors that could influence equipment and respite services use among Australian families caring for a girl/woman with Rett syndrome and examined relationships between use of these resources and the health of female caregivers. Data was sourced from questionnaires completed by families (n=170) contributing to the Australian…
Yi Eng J
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.
Discusses some assumptions, dilemmas, and questions in (1) facilitating support groups for caregivers whose relatives have Alzheimer's disease, (2) talking with other such facilitators around the country, (3) reviewing the literature, and (4) talking with group members themselves. Suggestions are made for a wider variety of support-group models.…
This study determines the relative effects of functional impairment, cognitive impairment, and duration of care of the elderly on caregivers' depression, and identifies the factors that influence this relationship. The variables were entered individually, based on a logical order in the path modeling. For mediators, the order of three types of…
BACKGROUND: Caring for patients with chronic medical and psychiatric disorders is associated with significant burden. However little is known about the burden experience by caregivers of patients with epilepsy in Nigeria. The objective of this study, therefore, was to assess the level and correlates of burden among ...
Romero-Moreno, Rosa; Márquez-González, María; Losada, Andrés; Fernández-Fernández, Virginia; Nogales-González, Celia
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.
Asai, Masayuki O.; Kameoka, Velma A.
The Asian family is regarded as a close-knit social unit in which elderly people are believed to occupy a highly respected position. Family members are thought to provide care for elderly parents gratefully because of filial piety. This stereotypic portrayal of Asian families, however, may not apply fully to Japanese families. This article points…
Krug, K; Bölter, R; Ballhausen, R A; Engeser, P; Peters-Klimm, F
The aim of the study: was to determine how far general practice teams are prepared to relieve family caregivers of palliative patients from their caregiving burden, the support they actually offer, and where they identify needs for improvement. Method: Focus groups and interviews on the issues of identification and support of family caregivers were conducted with practice teams (general practitioners, GPs, and medical assistants, MAs) and the results qualitatively analyzed. Results: 21 participants (14 GPs, 7 MAs) from 13 practices identified burdened family caregivers, thereupon offered support and provided contact details to local consultation services. They suggested to family caregivers that they should use their social network to create room for meeting their own needs. Conclusions: Practice teams use a multitude of individualized and unsystematic approaches to support family caregivers. In further studies within the framework of this project, systematic approaches will be identified and tried out. © Georg Thieme Verlag KG Stuttgart · New York.
Viard, D; Netillard, C; Cheraitia, E; Barthod, V; Choffel, J M; Tartary, D; Sauze, M; Nouara, A; Chalmendrier, C; Tissot, E
Why do caregivers working in psychiatry seem to wonder about their practices, in front of the recent mediatisation of patient education in France? Do our educational practices meet the needs and the expectations of patients and their families? These questions led us to carry out this qualitative and prospective study concerning the representations of patient education of the main actors in psychiatry. This work aims to assess the representations of patient education of the main actors in psychiatry, in particular to assess convergences and divergences. This is a qualitative and prospective study. Qualitative data are speeches from caregivers working in psychiatry, patients suffering from a psychiatric pathology and their families. The three populations studied were defined by precise characteristics. The sample was diversified by a variable related to the study theme: experience or not in patient education. Speeches were collected during interviews, which were carried out by the same person. Interviews were semi-structured by a thematic guide, which defined the themes to be explored. The three main themes are: the concept of patient education, the objectives of patient education, and the caregiver/patient relationship. We analysed the content of the speeches with a lexical reference table that we elaborated from the literature of experts in patient education. We also realised a transverse analysis in order to assess convergences and divergences between the different speeches. Thirty-two interviews were realised with fifteen caregivers (six psychiatrists and nine nurses), ten patients and seven families. In the speeches of the different populations, we found the expected element of language for all the themes explored. Unexpected ideas were also found in the speeches of the various groups. We could find convergences and divergences concerning these unexpected ideas between and within each group. Regarding convergences, all the groups mentioned the unexpected idea of
Washington, Karla T; Oliver, Debra Parker; Gage, L Ashley; Albright, David L; Demiris, George
Much of the existing research on shared decision-making in hospice and palliative care focuses on the provider-patient dyad; little is known about shared decision-making that is inclusive of family members of patients with advanced disease. We sought to describe shared decision-making as it occurred in hospice interdisciplinary team meetings that included family caregivers as participants using video-conferencing technology. We conducted a multimethod study in which we used content and thematic analysis techniques to analyze video-recordings of hospice interdisciplinary team meetings (n = 100), individual interviews of family caregivers (n = 73) and hospice staff members (n = 78), and research field notes. Participants in the original studies from which data for this analysis were drawn were hospice family caregivers and staff members employed by one of five different community-based hospice agencies located in the Midwestern United States. Shared decision-making occurred infrequently in hospice interdisciplinary team meetings that included family caregivers. Barriers to shared decision-making included time constraints, communication skill deficits, unaddressed emotional needs, staff absences, and unclear role expectations. The hospice philosophy of care, current trends in healthcare delivery, the interdisciplinary nature of hospice teams, and the designation of a team leader/facilitator supported shared decision-making. The involvement of family caregivers in hospice interdisciplinary team meetings using video-conferencing technology creates a useful platform for shared decision-making; however, steps must be taken to transform family caregivers from meeting attendees to shared decision-makers. © The Author(s) 2015.
Neri, Anita Liberalesso; Yassuda, Mônica Sanches; Fortes-Burgos, Andréa Cristina Garofe; Mantovani, Efigênia Passarelli; Arbex, Flávia Silva; de Souza Torres, Stella Vidal; Perracini, Mônica Rodrigues; Guariento, Maria Elena
In an aging population an increasing number of elderly caregivers will be called upon to provide care over a long period, during which time they will be burdened both by caregiving and by the physiological effects of their own aging. Among them there will be more aged male caregivers, who will probably be less prepared than women to become caregivers. The aim of this study was to investigate the relationship between caregivers' gender, age, family income, living arrangements and social support as independent variables, and depressive symptoms, comorbidities, level of frailty, grip strength, walking speed and social isolation, as dependent variables. 176 elderly people (123 women) were selected from a sample of a population-based study on frailty (n = 900), who had cared for a spouse (79.3%) and/or parents (31.4%) in the past five years (mean age = 71.8 ± 4.86 years; mean monthly family income in minimum wages = 4.64 ± 5.14). The study used questionnaires and self-report scales, grip strength and walking speed tests. 65% of participants evaluated caregiving as being very stressful. Univariate analyses of regression showed low family income as a risk factor for depression; being female and low perceived social support as a risk for comorbidities; being 80 years of age and above for low grip strength; and being male for social isolation indicated by discontinuity of activities and social roles. In multivariate analyses of regression, poverty arose as a risk factor for depression and being female for comorbidities. Gender roles, age, income and social support interacted with physical and emotional health, and with the continuity of social participation of elderly caregivers. Special attention must be given to male caregivers.
Kristanti, Martina Sinta; Engels, Yvonne; Effendy, Christantie; Astuti; Utarini, Adi; Vernooij-Dassen, Myrra
Dementia, even more than cancer, demands long-term care. While in Indonesia cancer is accepted as a disease requiring caregiving, dementia is still considered "a normal condition." These differences might affect the experiences of caregivers, especially those relating to social health, the subject of our study. We aim to describe and compare the lived experiences of family caregivers of patients with cancer (PWC) with those of patients with dementia (PWD) in Yogyakarta, Indonesia, and to explore the role of their social health in these experiences. A qualitative design was applied. In-depth face-to-face interviews were conducted with PWC and PWD caregivers in two outpatient clinics of a tertiary hospital. The constant comparative method was applied to analyze the data that were interpreted using the concept of social health to explore the experiences of the caregivers. We used Atlas.ti software. Three themes were identified: problems with caregiving, dealing with problems, and beliefs in caregiving. We found more similarities than differences in the experiences of caregivers in both groups. Half of the categories were related to social health: challenges, consequences, hiding, social support, and the caregiver's approach. The organization of dementia care is characterized by simplicity and direct ties between medical specialists, PWD, and caregivers, whereas cancer care encounters coordination problems. Family caregivers of both groups mostly had similar experiences of the caregiving process. Gaining a better understanding of the specific experiences of caregivers, and their social health, opens new avenues for interventions to improve their quality of life.
Oyegbile, Yemisi Okikiade; Brysiewicz, Petra
To describe the experiences of family caregivers providing care for patients living with End-Stage Renal Disease in Nigeria BACKGROUND: Family caregiving is where an unpaid volunteer, usually a close family member, attends to the needs of a loved one with a chronic, disabling illness within the home. Much research has been conducted in the area of family caregiving in high-income countries. However, the same cannot be said for many of the low-resource, multicultural African countries. Qualitative descriptive study. This qualitative descriptive study used manifest content analysis to analyse data from semi-structured, individual interviews, with 15 purposively selected family caregivers. Two tertiary institutions providing renal care in South-Western Nigeria: the research setting for this study. Five categories were identified, and these included disconnectedness with self and others, never-ending burden, 'a fool being tossed around', obligation to care and promoting a closer relationship. Experiences associated with the caregiving of patients diagnosed with End-Stage Renal Disease evoked a number of emotions from the family caregivers, and the study revealed that caregiving imposed some burdens that are specific to low-resource countries on participants. Nurses need to engage family caregivers on disease-specific teachings that might promote understanding of the disease process and role expectation. Family caregivers may benefit from social support services. © 2016 John Wiley & Sons Ltd.
Gopalan, Geetha; Fuss, Ashley; Wisdom, Jennifer P
Among children who remain at home with their permanent caregivers following a child welfare investigation, few who manifest emotional and behavioral difficulties actually engage in mental health treatment. The Multiple Family Group service delivery model to reduce childhood disruptive behavior disorders (MFG) has shown promise in engaging child welfare-involved families. This qualitative study examines caregiver perceptions of factors that influence retention in MFGs among child welfare-involved families. Twenty-five predominantly Black and Hispanic adult (ages 26-57) female caregivers with child welfare services involvement participated in individual, in-depth interviews about their experience with MFGs. Transcribed interview data were thematically coded guided by grounded theory methodology. Emergent themes were subsequently organized into a conceptual framework. Within the overarching influence of child welfare services involvement, specific components of MFGs influencing retention included the quality of interaction among group members, group facilitators' attentive approach with caregivers, supports designed to overcome logistical barriers (i.e., child care, transportation expenses, meals), and perceptions of MFG content and activities as fun and helpful. Caregiver factors, including their mental health and personal characteristics, as well as children's behavior, (i.e., observed changes in behavioral difficulties) were also associated with retention. High acceptability suggest utility for implementing MFGs within settings serving child welfare involved families, with additional modifications to tailor to setting and client features.
Roelands, Marc; Van Oost, Paulette; Depoorter, AnneMarie
This study aims to investigate whether selected social and psychological characteristics of family caregivers of persons with dementia are related to community-based service use in Belgium. Two aspects were distinguished in service utilisation: volume (number of contacts) and diversity (number of services). Within a selected region, dementia caregivers were traced via the detection of persons with dementia known to community health or social services. A probability diagnosis was made with the Geriatric Mental State and the computer algorithm AGECAT. Family caregivers of persons with dementia (N = 168) were interviewed at home by means of a structured questionnaire. Data were analysed with multiple regression analysis. Co-residence, a positive attitude towards home service use, and increased problem-solving coping were found to be direct predictors of increased diversity of services used, whereas a lower burden of behaviour problems, living apart, and increased avoidance coping were found to be direct predictors of increased volume of service use. Care recipients' behaviour problems and functional status were not found to be related to service use. The results suggest that social and psychological factors have a larger impact on service use in family caregivers of persons with dementia, compared to objective or subjective burden. Interventions to increase awareness of relevant services, to improve attitudes towards their use and support problem-solving coping in family caregivers may be considered to increase the use of appropriate services.
Larsen, Lill Sverresdatter; Normann, Hans Ketil; Hamran, Torunn
Western health care policy emphasizes continuity of care for people with dementia. This paper presents formal and family caregivers' descriptions of collaboration in home-based dementia care and explores whether this collaboration inhibits or enables continuity of care and the use of the statutory individual plan. Empirical data were derived from 18 in-depth interviews with formal and family caregivers and brief fieldwork. The results reveal dynamic positions in collaborative practice and, from these positions, discrepancies in descriptions of practices and the needs of the person with dementia. Such micro-level discrepancies may serve as barriers for macro-level continuity of care objectives. To ensure continuity of care, formal and family caregivers must be aware of their positions and discuss specific expectations for information flow, involvement and care responsibilities. Individual plan can serve as a starting point for such discussions. © The Author(s) 2016.
Danucalov, M A D; Kozasa, E H; Ribas, K T; Galduróz, J C F; Garcia, M C; Verreschi, I T N; Oliveira, K C; Romani de Oliveira, L; Leite, J R
Familial caregivers of patients with Alzheimer's disease exhibit reduced quality of life and increased stress levels. The aim of this study was to investigate the effects of an 8-week yoga and compassion meditation program on the perceived stress, anxiety, depression, and salivary cortisol levels in familial caregivers. A total of 46 volunteers were randomly assigned to participate in a stress-reduction program for a 2-month period (yoga and compassion meditation program-YCMP group) (n = 25) or an untreated group for the same period of time (control group) (n = 21). The levels of stress, anxiety, depression, and morning salivary cortisol of the participants were measured before and after intervention. The groups were initially homogeneous; however, after intervention, the groups diverged significantly. The YCMP group exhibited a reduction of the stress (P anxiety (P meditation program may offer an effective intervention for reducing perceived stress, anxiety, depression, and salivary cortisol in familial caregivers.
Zhou, Ting; Yi, Chunli; Zhang, Xuxia; Wang, Yuyin
Caregiver mental health is widely considered to be an important factor influencing children's asthma symptoms. The present study aimed to examine key factors that contribute to caregiver mental health in pediatric asthma with a Chinese sample. Two hundred participants reported their family socioeconomic status (SES), proneness to shame, asthma symptoms control of their child, family functioning, and their depression and anxiety symptoms. Results suggested that low family SES, low family functioning, and a high level of shame proneness were associated with high levels of anxiety and depression for caregivers. Family functioning mediated the effects of SES and shame on caregiver mental health and also moderated the effects of SES and shame on caregiver depression. This study highlights the importance of reducing experience of shame and enhancing family functioning in families affected by pediatric asthma. © 2014 Family Process Institute.
Sun, Fei; Durkin, Daniel W; Hilgeman, Michelle M; Harris, Grant; Gaugler, Joseph E; Wardian, Jana; Allen, Rebecca S; Burgio, Louis D
Literature on institutionalization of patients with dementia has not considered the role of caregivers' quality of care, which encompasses caregivers' exemplary care (EC) behaviors and caregivers' potentially harmful behaviors (PHBs) toward care recipients. This study sought to understand the role of quality of care in mediating between caregiving stressors and caregiver desire to institutionalize (DTI) a patient with dementia. A sample of 612 family caregivers from diverse racial/ethnic backgrounds was drawn from the baseline data of the Resources for Enhancing Alzheimer's Caregiver Heath (REACH II) project. Multiple mediator models were run using Preacher and Hayes asymptotic and resampling strategies to assess direct and indirect effects of caregiver stressors (daily care bother, behavioral bother, and burden) on caregiver desire to institutionalize a patient with dementia. Overall, PHB was positively related to caregiver desire to institutionalize their care recipients. Specifically, PHB was found to mediate the relationship between caregiving stressors and DTI in the Caucasian and Latino groups, whereas only the mediation effect of EC was significant in the African American group. Caregivers' perceptions of quality of care helped explain their desire to institutionalize their care recipients with dementia. Including assessment of EC and PHB in clinical and social service settings is recommended for all ethnic groups. Interventions should facilitate EC behaviors among African American caregivers and address concerns of PHBs in Caucasian and Latino caregivers.
Cinthia Costa Ponce
Full Text Available Abstract Psychoeducational activities are a way of promoting help for caregivers of patients with Alzheimer's disease, representing a forum for knowledge sharing, and in which the primary focus is on psychological themes aimed at carers developing coping skills and strategies. Objective: The main objective of this study was to gauge perceptions about care and its impact among family caregivers of patients with AD participating in a psychoeducational group intervention, as well as the possible positive and negative aspects associated with this role. The subjective impact of AD on the lives of these caregivers was assessed on each of the dimensions of the Caregiver Burden Scale using a semi-directed interview on perceptions about care. Methods: This was a prospective study, in which information was collected twice, before and after, psychoeducational intervention. Through the application of the scale, benefits were evident for all dimensions assessed in the instrument (general strain, isolation, disappointment, emotional involvement and environment. Results: The results showed that after the psychoeducational intervention, caregivers felt less burdened by care compared to pre-intervention. Conclusion: These findings confirm that expanded implementation of psychoeducational interventions for caregivers of patients with AD can be beneficial for both caregivers and patients.
Herrera, Angelica P; Lee, Jerry W; Nanyonjo, Rebecca D; Laufman, Larry E; Torres-Vigil, Isabel
We sought to explore the association of religious and spiritual coping with multiple measures of well-being in Latinos caring for older relatives with long-term or permanent disability, either with or without dementia. Using a multi-dimensional survey instrument, we conducted in-home interviews with 66 predominantly Mexican-American Catholic family caregivers near the US-Mexico border. We assessed caregivers' intrinsic, organizational and non-organizational religiosity with the Duke Religiosity Index, as well as Pargament's brief positive and negative spiritual coping scale to determine the association of religiosity with caregivers' mental and physical health, depressive symptomatology and perceived burden. Using regression analysis, we controlled for sociocultural factors (e.g. familism, acculturation), other forms of formal and informal support, care recipients' functional status and characteristics of the caregiving dyad. Intrinsic and organizational religiosity was associated with lower perceived burden, while non-organizational religiosity was associated with poorer mental health. Negative religious coping (e.g. feelings that the caregiver burden is a punishment) predicted greater depression. Measures of well-being should be evaluated in relation to specific styles of religious and spiritual coping, given our range of findings. Further investigation is warranted regarding how knowledge of the positive and negative associations between religiosity and caregiving may assist healthcare providers in supporting Latino caregivers.
The intervention program in this study is a derivative work of the Stress-Busting Program (SBP) for caregivers of persons with dementia (Lewis...military context. Methods: Program content adapted to military context; 9-session intervention provided in small groups with two facilitators. Data...session intervention provided in small groups with two facilitators. Data collected at baseline, exit, and 2 months post- intervention , with interviews
Flávia Araujo de Amorim
Full Text Available Abstract Background: Caring for a demented relative is frequently associated with burden; yet, a subset of family caregivers may experience it as rewarding. Certain characteristics, including personality factors, may render caregivers more resilient to stress and therefore attenuate the perception of burden and its impact on quality of life. Objective: To determine the association between social skills and well being among family caregivers to patients with dementia. Methods: Forty-one family caregivers to patients with dementia due to Alzheimer's disease (AD were assessed with Social Skills Inventory (SSI-Del-Prette and the Zarit Burden Interview; quality of life was estimated with WHO-QoL-bref questionnaire. Results: We found positive correlations between total SSI scores and the psychological (r = 0.450; p = 0.003 and environmental (r = 0.408; p = 0.008 domains of WHO-QoL-bref. The SSI factor ‘self-control of aggressiveness’ (SSI-F5 was negatively correlated with the magnitude of caregiver burden (r = -0.483; p = 0.001 and positively associated with the psychological domain of WHO-QoL-bref (r = 0.446; p = 0.003. Caregivers with better ‘self-assertion in the expression of positive affect’ (SSI-F2 also had better ‘social relationships’ according to WHO-QoL-bref (r = 0.402; p = 0.009. Discussion: The availability of more sophisticated repertoires of social skills may render family caregivers more resilient to burden, preserving their quality of life while enduring this task.
Luana Baldin Storti
Full Text Available ABSTRACT Objective: to analyze the relationship between the distress of the family caregiver and the presence of neuropsychiatric symptoms in elderly patients with Alzheimer's disease or mixed dementia. Method: a descriptive, cross-sectional study conducted in the Geriatric and Dementias Clinic of a general tertiary hospital, with 96 elderly people with Alzheimer's disease or mixed dementia and their family caregivers. Questionnaires to characterize the elderly and caregivers, and the Neuropsychiatric Inventory were used. Descriptive statistics and Pearson correlation test were performed. Results: 68.7% of the elderly were women, average age 80.8 years, 56.2% had Alzheimer's disease and 43.7%, mixed dementia. Among caregivers, 90.6% were women, average age 56, 70.8% took care of parents and 64.6% lived with the elderly. There was a strong (r = 0.82 and significant (p <0.01 correlation between the total score on the Neuropsychiatric Inventory and the total score on the Neuropsychiatric Inventory-Distress and strong (r = 0.80 and significant (p <0 01 correlation between the total score on the Neuropsychiatric Inventory Distress and the number of neuropsychiatric symptoms, i.e., the higher the number, frequency and severity of these symptoms in the elderly, the more intense is the caregiver distress. Conclusion: the presence of neuropsychiatric symptoms in the elderly was related to increased distress in caregivers.
Brazil, Kevin; Kaasalainen, Sharon; Williams, Allison; Rodriguez, Christine
There are many challenges in delivering rural health services; this is particularly true for the delivery of palliative care. Previous work has identified consistent themes around end-of-life care, including caregiver burden in providing care, the importance of informal care networks and barriers imposed by geography. Despite these well-known barriers, few studies have explored the experience of palliative care in rural settings. The purpose of the present study was to compare the experiences of rural family caregivers actively providing end-of-life care to the experiences of their urban counterparts. Caregivers' perceived health status, the experience of burden in caregiving, assessment of social supports and the pattern of formal care used by the terminally ill were explored using a consistent and standardized measurement approach. A cross-sectional survey study was conducted with 100 informal caregivers (44 rural, 56 urban) actively providing care to a terminally ill patient recruited from a publicly funded community agency located in northeastern Ontario, Canada. The telephone-based survey included questions assessing: (i) caregiver perceived burden (14-item instrument based on the Caregiver's Burden Scale in End-of-Life Care [CBS-EOLC]); (ii) perceived social support (modified version of the Multidimensional Scale of Perceived Social Support [MSPSS] consisting of 12 items); and (iii) functional status of the care recipient (assessed using the Eastern Collaborative Oncology Group performance scale). Rural and urban caregivers were providing care to recipients with similar functional status; the majority of care recipients were either capable of all self-care or experiencing some limitation in self-care. No group differences were observed for caregiver perceived burden: both rural and urban caregivers reported low levels of burden (CBS-EOLC score of 26.5 [SD=8.1] and 25.0 [SD=9.2], respectively; p=0.41). Urban and rural caregivers also reported similarly high
Ray, Robin A; Brown, Janice; Street, Annette F
Increasingly, people with neurodegenerative illness are cared for at home until close to death. Yet, discussing the reality of dying remains a social taboo. To examine the ways, family caregivers of people living with motor neurone disease (MND) experienced the dying of their relative and to identify how health practitioners can better prepare families for end-of-life care. Secondary analysis was undertaken on data sets generated from two longitudinal qualitative studies employing similar data collection and analysis methods. Combining data sets increased participant numbers in a low incidence disease group. Primary studies were undertaken with family caregivers in England and Australia. Interview and observational data were collected mostly in home. Participants who discussed dying and death formed the sample for secondary analysis. Combined data revealed four major themes: planning for end of life, unexpected dying, dignity in the dying body and positive end to MND. Despite short survival predictions, discussions among family members about dying were often sporadic and linked to loss of hope. Effective planning for death assisted caregivers to manage the final degenerative processes of dying. When plans were not effectively communicated or enacted, capacity to preserve personhood was reduced. Returning death and dying to social discourse will raise the level of community awareness and normalize conversations about end-of-life care. Strategies for on-going, effective communication that facilitates advance care planning among patients, their families and practitioners are essential to improve dying and death for people with MND and their family caregivers. © 2012 John Wiley & Sons Ltd.
Tramonti, Francesco; Bonfiglio, Luca; Di Bernardo, Carolina; Ulivi, Chiara; Virgillito, Alessandra; Rossi, Bruno; Carboncini, Maria Chiara
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.
Haley, William E.; And Others
Family caregivers of patients with Alzheimer's disease (AD) commonly have high levels of psychological distress. Black caregivers often report less depression than white caregivers, but the process underlying this difference is poorly understood. With the use of a stress process model, 123 white and 74 black family caregivers of patients with AD…
Tjia, Jennifer; Ellington, Lee; Clayton, Margaret F; Lemay, Celeste; Reblin, Maija
Family caregivers (FCGs) are often at the frontline of symptom management for patients with advanced illness in home hospice. FCGs' cognitive, social, and technical skills in complex medication management have been well studied in the literature; however, few studies have tested existing frameworks in clinical cases in home hospice. This study sought to assess the applicability of caregiver medication management skills framework by Lau et al. in the context of family caregiving in home hospice to further the understanding of FCGs' essential medication management skills. This was a secondary data analysis of 18 audio recorded home hospice visits transcribed verbatim; deductive content analysis of caregiver-nurse interactions was conducted. The target sample included FCGs of hospice patients who had cancer diagnoses in hospices located in the greater urban area of the Rocky Mountain West. Caregiver medication management skills were identified and categorized into the five domains of caregiver expertise. Exemplars of each domain were identified. An average of four medications (SD = 3.5) was discussed at each home hospice visit. Medication knowledge skills were observed in most home hospice visits (15 of 18). Teamwork skills were observed in 11 of 18 cases, followed by organizational and personhood skills (10 of 18). Symptom management skills occurred in 12 of 18 cases. An additional two subconstructs of the personhood domain-1) advocacy for the caregiver and 2) skills in discontinuing medications-were proposed. These findings support framework by Lau et al. for caregiver medication management skills and expands on the existing domains proposed. Future interventions to assess FCGs' skills are recommended. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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.
Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork
Dementia is one of the most challenging age-related illnesses for family caregivers, whose care-related burden is well known. Research indicates that day care centres (DCCs) can reduce the caregiver burden and help family caregivers to cope with demands; however, the current body of knowledge is still tentative and inconsistent, and more research is recommended. The aim of this study is to provide an extended understanding of the situation of family caregivers and to examine to what extent DCCs can meet their need for support and respite. This study has a qualitative descriptive design using in-depth interviews with 17 family caregivers of people with dementia attending DCCs. The data analysis was undertaken using systematic text condensation. Caregivers experience a complex role, with added responsibilities, new tasks, and emotional and relational challenges that are expressed through distressing emotions and demands for interaction. Additionally, the caregiving role leads to positive experiences, such as acceptance and adaptation, support and help, and positive changes in the relationship. Day care relieves family caregivers by meeting the person with dementia's needs for social community, nutrition, physical activity, and structure and variety in everyday life. Using a DCC led to a higher quality of time spent together and easier cooperation, but it also produced some hard feelings and challenging situations. DCCs gave the caregivers a feeling of freedom and increased the time available to be spent on their own needs, to be social and to work or do practical tasks undisturbed. DCCs for people with dementia can give family caregivers support and relief and have a positive impact on the relationship between the family caregiver and the person with dementia. A more individualized program, in addition to flexible opening hours, would make DCCs even more effective as a respite service, positively influencing the family caregiver's motivation and ability to care and
Kageyama, M; Nakamura, Y; Kobayashi, S; Yokoyama, K
WHAT IS KNOWN ON THE SUBJECT?: Empowerment of family caregivers of adults with mental health issues has received increasing attention among mental health nurses in Japan and has been recognized as a new goal of family interventions. The Family Empowerment Scale (FES) was originally developed to measure the empowerment status of parents of children with emotional disorders. However, it was later applied to broader health issues. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: We developed a Japanese version of the FES for family caregivers of adults with mental health issues (FES-AMJ) and examined the validity and reliability among parents. Results showed that the FES-AMJ had acceptable concurrent validity and reliability; however, insufficient construct validity was found, especially for the subscale regarding the service system. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Further studies need to modify the scale. Clarification of ideal family empowerment status in the service system through discussion with mental health nurses and family caregivers may be important. Introduction The Family Empowerment Scale (FES) was originally developed for parents of children with emotional disorders. In Japan, family empowerment is gaining increasing attention and may be one goal of nursing interventions. Aim To develop a Japanese version of the FES for family caregivers of adults with mental health issues and to study the validity and reliability of this scale among parents. Method We translated the FES into Japanese and administered this self-report questionnaire to 275 parents. Results The multitrait scaling analysis revealed acceptable convergent validity and insufficient discriminant validity among all subscales. In particular, all items of the Service system subscale had insufficient discriminant and/or convergent validity. Each subscale significantly correlated with the indicator of empowerment. The intraclass correlation coefficients of each subscale were .855-.917. Cronbach
Horodynski, Mildred A; Brophy-Herb, Holly E; Martoccio, Tiffany L; Contreras, Dawn; Peterson, Karen; Shattuck, Mackenzie; Senehi, Neda; Favreau, Zachary; Miller, Alison L; Sturza, Julie; Kaciroti, Niko; Lumeng, Julie C
Early child weight gain predicts adolescent and adult obesity, underscoring the need to determine early risk factors affecting weight status and how risk factors might be mitigated. Socioeconomic status, food insecurity, caregiver depressive symptomology, single parenthood, and dysfunctional parenting each have been linked to early childhood weight status. However, the associations between these risk factors and children's weight status may be moderated by caregiver feeding styles (CFS). Examining modifiable factors buffering risk could provide key information to guide early obesity intervention efforts. This analysis used baseline data from the Growing Healthy project that recruited caregivers/child dyads (N = 626) from Michigan Head Start programs. Caregivers were primarily non-Hispanic white (62%) and African American (30%). After using latent class analysis to identify classes of familial psychosocial risk, CFS was tested as a moderator of the association between familial psychosocial risk class and child body mass index (BMI) z-score. Latent class analysis identified three familial psychosocial risk classes: (1) poor, food insecure and depressed families; (2) poor, single parent families; and (3) low risk families. Interactive effects for uninvolved feeding styles and risk group indicated that children in poor, food insecure, and depressed families had higher BMI z-scores compared to children in the low risk group. Authoritative feeding styles in low risk and poor, food insecure, and depressed families showed lower child BMI z-scores relative to poor, single parent families with authoritative feeding styles. Uninvolved feeding styles intensified the risk and an authoritative feeding style muted the risk conferred by living in a poor, food-insecure, and depressed family. Interventions that promote responsive feeding practices could help decrease the associations of familial psychosocial risks with early child weight outcomes. Copyright © 2017 Elsevier Ltd
Chochinov, Harvey M.; Kristjanson, Linda J.
Abstract Background: There are calls to explore psychological interventions to reduce distress in patients with motor neuron disease (MND) and their family caregivers. Dignity therapy is a short-term psychotherapy intervention shown to alleviate distress for people with life-limiting illnesses. Objectives: To assess the acceptability, feasibility, and effectiveness of dignity therapy to reduce distress in people with MND and their family caregivers. Methods: The study used a repeated-measures design pre- and post-intervention. Acceptability and feasibility were assessed using participants' ratings of the helpfulness of the intervention across several domains and time and resources required. Effectiveness measures for patients included: dignity-related distress, hopefulness, and spiritual well-being; and those for family caregivers included burden, hopefulness, anxiety, and depression. Results: Twenty-seven patients and 18 family caregivers completed the intervention. Dignity therapy was well accepted, including those patients who required assisted communication devices. The feasibility may be limited in small or not well-resourced services. There were no significant differences in all outcome measures for both groups. However, the high satisfaction and endorsement of dignity therapy by patients suggests it has influenced various important aspects of end-of-life experience. Family caregivers overwhelmingly agreed that the dignity therapy document is and will continue to be a source of comfort to them and they would recommend dignity therapy to others in the same situation. Conclusions: This is the first dignity therapy study to focus on MND and on home-based caregiving. Results established the importance of narrative and generativity for patients with MND and may open the door for other neurodegenerative conditions. PMID:25314244
Funk, Laura M; Allan, Diane E; Stajduhar, Kelli I
When providing care for a loved one with a terminal illness, family members often look to health care providers for guidance and expertise. The objective of this study is to explore family caregiver accounts of their experiences within the health care system and with individual providers. A thematic analysis of secondary qualitative data was performed. Data are from a subsample of bereaved and current family caregivers (N = 31) in a prior study of coping in end-of-life cancer situations. Data from these participants referring to experiences with health care providers was thematically coded and the concept of "security" was used as an analytic lens to facilitate conceptual development and exploration. Considered together, the findings can be viewed as manifestations of a need and desire for security in palliative family caregiving. Specifically, family caregivers' accounts illustrate the importance of feeling secure that health care services will be provided by competent professionals; feeling secure in their timely access to needed care, services, and information; and feeling secure in their own identity and self-worth as a caregiver and individual. In addition, the findings suggest a conceptualization of security that extends beyond trust in individuals to include a generalized sense of institutional trust in the health care system. The concept of security moves beyond description of individual satisfaction or dissatisfaction with health care to identify a common, foundational need underlying such evaluations. Further empirical research is needed that explicitly focuses on caregivers' experiences of security and insecurity in the domains identified in this article. This will contribute to theory building as well as assist in identifying the causes and consequences of security.
Angélica da Silva Araujo
Full Text Available Objective: To know the main aspects featuring the experience of caring for a family member who is schizophrenic and discuss the possible therapeutic benefits which arise from the participation of caregivers in occupational therapy groups. Methodological procedures: Qualitative-descriptive study, performed in a mental health ambulatory at a general hospital in the state of São Paulo. Data was collected through audio-recording in occupational therapy groups which counted on the participation of 10 family-caregivers of schizophrenic patients with follow-up treatment at this ambulatory. The data were analyzed through the thematic content analysis of Lawrence Bardin. Results: Caregivers of schizophrenic patients face daily difficulties arising from living together with their beloved ones and coping with their behaviors. These caregivers stress the importance of groups as a possible opportunity to have contact with other experiences of people under similar conditions, which not only enables them to clear doubts concerning the illness and the provided care, but also to reflect on the importance of taking care of themselves. Conclusions: There is great need for new studies that address this issue and develop continuous therapeutic interventions that offer caregivers the possibility to be heard about their experiences and to share information, aiming to prepare them to offer a more effective care for the schizophrenic family member and others with mental disorders. The importance of evaluating such interventions is therefore highlighted.
Full Text Available Background: Attention deficit hyperactivity disorder (ADHD is one of the most common chronic childhood disorders that lead to dysfunction and disability in childhood and subsequently be careful. This study aimed to understand the needs of the children's caregivers in Iran. Materials and Methods: This qualitative research was conducted in 2016. Using purposive sampling, 27 participants from 20 families of children with ADHD were interviewed. Unstructured interviews were conducted within 6 months in Isfahan. Data gathering continued until no new data were accessed. Data were analyzed using qualitative content analysis. Results: The results of this research are shown in three main categories: (1 The caregiver's need for having sufficient information about the disorder, its cause and treatments (pharmacological and nonpharmacological; (2 the need to have enough knowledge about communication problems while caring for a sick child; and (3 the need to improve the performance of care. They were classified under the relevant concept. Conclusions: Caregivers of children with ADHD have different needs and problems and assessing them would decrease the child's problems and consequently, the family's problems. It would also increase the sense of control and authority over the child's condition in the caregivers. Since this disorder is chronic and permanent, ignoring the needs of caregivers not only would cut the process of the child's treatment but would also intensify the family's and child's problems. So it is recommended to conduct further studies about each of the resulted concepts in this study and the obstacles for reaching them.
Background Older people from culturally and linguistically diverse groups are underrepresented in residential aged care but overrepresented in community aged care in Australia. However, little is known about culturally and linguistically diverse family caregivers in utilising dementia services in Australia because previous studies mainly focused on the majority cultural group. Experiences of caregivers from culturally and linguistically diverse groups who are eligible to utilise dementia services in Australia are needed in order to optimize the utilisation of dementia services for these caregivers. Methods The aim of the study was to explore the experiences of family caregivers from Chinese, Greek, Italian and Vietnamese groups in utilising dementia services. Gadamer's philosophical hermeneutics was used to interpret the experiences of the participants. Focus group discussions and in-depth individual interviews were used to collect data. Data collection was conducted over a six month period in 2011. In total, 46 family caregivers who were caring for 39 persons with dementia participated. Results Four themes were revealed: (1) negotiating services for the person with dementia; (2) the impact of acculturation on service utilisation; (3) the characteristics of satisfactory services; and (4) negative experiences in utilising services. The present study revealed that the participation of caregivers from culturally and linguistically diverse groups in planning and managing dementia services ranged markedly from limited participation to full participation. Conclusions The findings of this study suggest that caregivers from culturally and linguistically diverse groups need to be fully prepared so they can participate in the utilisation of dementia services available to them in Australia. PMID:24148155
Rosenbloom, Deborah A; Fick, Donna M
Delirium is highly prevalent, especially in hospitalized older adults and is a costly, significant predictor of poor outcomes, including mortality and institutionalization. Partnership between family caregivers and staff nurses could be a cost-neutral preventive strategy. The Nurse/Family Caregiver Partnership for Delirium Prevention (NFCPM) is an innovative educational program that concurrently teaches family caregivers and nurses about delirium and partnering in prevention. The purpose of this feasibility study was to examine the effect of the NFCPM on knowledge of delirium, attitudes toward partnership, and satisfaction with the NFCPM. A quasi-experimental pretest-posttest design was used to enroll 28 patients, 28 family caregivers, and 28 staff nurses. The intervention group significantly improved knowledge of delirium and attitudes toward partnership. Key to satisfaction were participation in decision making, communication, and respect. The NFCPM appears feasible for clinical practice and provides an innovative strategy for family and nurses to improve hospital outcomes for older adults. Copyright © 2014 Mosby, Inc. All rights reserved.
Sugiyama, Takehiro; Tamiya, Nanako; Watanabe, Taeko; Wakui, Tomoko; Shibayama, Taiga; Moriyama, Yoko; Yamaoka, Yui; Noguchi, Haruko
The public mandatory long-term care insurance system in Japan has supposedly mitigated the care burden for family caregivers of older adults, whereas family caregivers still play a considerable role in providing care. The effect of informal caregiving on the caregiver's health has been of great interest. We investigated the relationship between the amplitude of informal caregiving and caregiver participation in health check-ups in Japan. The present study was a cross-sectional analysis of nationally representative data in Japan (2010 Comprehensive Survey of Living Conditions). We investigated the relationship between care recipients' care-need level and in-home caregiver participation in health check-ups during the last year of the survey for caregivers. A total of 3354 caregiver/recipient pairs were included in the study. Crude proportions of caregivers completing a health check-up by care-need level were 68.4% (support required 1 and 2), 63.5% (care required 1-3) and 60.3% (care required 4 and 5). Higher care-need level was negatively associated with caregiver participation in health check-ups (support required 1 and 2as reference, care required 1-3: odds ratio 0.82, 95% confidence interval 0.75-0.90), care required 4 and 5: odds ratio 0.76, 95% confidence interval 0.74-0.79) after adjustment for possible confounders. Inclusion of the caregiver time devoted to care per day and caregiver self-rating of health as independent variables did not change the result. These results suggest that facilitating health check-up participation for family caregivers of care recipients with higher care-need levels might be an effective intervention for decreasing the gap in health behavior possibly caused by informal caregiving. Geriatr Gerontol Int 2018; 18: 26-32. © 2017 Japan Geriatrics Society.
Ruth Molina Fuillerat
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.
Annelie K Gusdal
Full Text Available Heart failure is a growing public health problem associated with poor quality of life and significant morbidity and mortality. The majority of heart failure care is provided by family caregivers, and is associated with caregiver burden and reduced quality of life. Research emphasizes that future nursing interventions should recognize the importance of involving family caregivers to achieve optimal outcomes.The aims of this study are to explore registered nurses' perceptions about the situation of family caregivers to patients with heart failure, and registered nurses' interventions, in order to improve family caregivers' situation.The study has a qualitative design with an inductive approach. Six focus group interviews were held with 23 registered nurses in three hospitals and three primary health care centres. Data were analysed using qualitative content analysis.Two content areas were identified by the a priori study aims. Four categories and nine sub-categories emerged in the analysis process. The content area "Family caregivers' situation" includes two categories: "To be unburdened" and "To comprehend the heart failure condition and its consequences". The content area "Interventions to improve family caregivers' situation" includes two categories: "Individualized support and information" and "Bridging contact".Registered nurses perceive family caregivers' situation as burdensome, characterized by worry and uncertainty. In the PHCCs, the continuity and security of an RN as a permanent health care contact was considered an important and sustainable intervention to better care for family caregivers' worry and uncertainty. In the nurse-led heart failure clinics in hospitals, registered nurses can provide family caregivers with the opportunity of involvement in their relative's health care and address congruence and relationship quality within the family through the use of "Shared care" and or Family-centred care. Registered nurses consider it
Joling, K.J.; van Marwijk, H.W.J.; van der Horst, H.E.; Scheltens, P.; van de Ven, P.M.; Appels, B.A.; van Hout, H.P.J.
Background: Interventions relieving the burden of caregiving may postpone or prevent patient institutionalization. The objective of this study was to determine whether a family meetings intervention was superior to usual care in postponing nursing home placement of patients with dementia. Methods: A
Morton, Rachael L; Snelling, Paul; Webster, Angela C; Rose, John; Masterson, Rosemary; Johnson, David W; Howard, Kirsten
Dialysis modality preferences of patients with chronic kidney disease (CKD) and family caregivers are important, yet rarely quantified. Prospective, unlabeled, discrete-choice experiment with random-parameter logit analysis. Adults with stages 3-5 CKD and caregivers educated about dialysis treatment options from 8 Australian renal clinics. Preferences for and trade-offs between the dialysis treatment attributes of life expectancy, number of hospital visits per week, ability to travel, hours per treatment, treatment time of day, subsidized transport service, and flexibility of treatment schedule. Results presented as ORs for preferring home-based or in-center dialysis to conservative care. 105 predialysis patients and 73 family caregivers completed the study. Median patient age was 63 years, and mean estimated glomerular filtration rate was 18.1 (range, 6-34) mL/min/1.73 m(2). Median caregiver age was 61 years. Home-based dialysis (either peritoneal or home hemodialysis) was chosen by patients in 65% of choice sets; in-center dialysis, in 35%; and conservative care, in 10%. For caregivers, this was 72%, 25%, and 3%, respectively. Both patients and caregivers preferred longer rather than shorter hours of dialysis (ORs of 2.02 [95% CI, 1.51-2.70] and 2.67 [95% CI, 1.85-3.85] for patients and caregivers, respectively), but were less likely to choose nocturnal than daytime dialysis (ORs of 0.07 [95% CI, 0.01-0.75] and 0.03 [95% CI, 0.01-0.20]). Patients were willing to forgo 23 (95% CI, 19-27) months of life expectancy with home-based dialysis to decrease their travel restrictions. For caregivers, this was 17 (95% CI, 16-18) patient-months. Data were limited to stated preferences rather than actual choice of dialysis modality. Our study suggests that it is rare for caregivers to prefer conservative nondialytic care for family members with CKD. Home-based dialysis modalities that enable patients and their family members to travel with minimal restriction would be
Naef, Rahel; Hediger, Hannele; Imhof, Lorenz; Mahrer-Imhof, Romy
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.
Lam, Paul Cw; Ng, Petrus; Pan, Jiayan; Young, Daniel Kw
In Chinese societies, family caregivers play an important role in the recovery of persons with serious mental illness, such as schizophrenia. While family caregivers are often invaluable sources of caregiving in the community, a majority of them lack adequate knowledge and support skills to cope with the tasks involved. This study compares the coping strategies and psychological health of caregivers for family members with schizophrenia in two Chinese cities, Hong Kong and Guangzhou. A total of 109 caregivers, including 39 from Hong Kong and 70 from Guangzhou, were recruited from non-governmental mental health organizations in the two cities. They were assessed by the Chinese version of the Ways of Coping Questionnaire and the General Health Questionnaire. While there was no significant difference in the psychological distress of the family caregivers in the two locations, the Guangzhou caregivers adopt significantly more of the eight coping strategies, namely, confronting coping, distancing, self-control, seeking social support, accepting responsibility, escape-avoidance, planful problem solving and positive reappraisal, than their counterparts in Hong Kong. Significant correlations were also found between psychological distress and coping strategies of caregivers in the two cities. There were significant differences in the coping strategies of family caregivers for people with schizophrenia in the two Chinese cities. Further studies are warranted to investigate factors affecting their coping strategies and their effects on psychological health. © The Author(s) 2015.
Dionne-Odom, J Nicholas; Demark-Wahnefried, Wendy; Taylor, Richard A; Rocque, Gabrielle B; Azuero, Andres; Acemgil, Aras; Martin, Michelle Y; Astin, Meka; Ejem, Deborah; Kvale, Elizabeth; Heaton, Karen; Pisu, Maria; Partridge, Edward E; Bakitas, Marie A
Little is known about the impact of family caregiving for adults with poor prognosis cancer on caregivers' own individual self-care practices. We explored differences in caregivers' discrete self-care practices associated with varying levels of caregiver well-being, preparedness, and decision-making self-efficacy. Cross-sectional survey within eight community-based southeastern U.S. cancer centers was conducted. Family caregivers of Medicare beneficiaries ≥65 years with pancreatic, lung, brain, ovarian, head and neck, hematologic, or stage IV cancer completed measures of individual self-care practices (health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management, and sleep), well-being (anxiety, depression, and health-related quality of life [HRQoL]), preparedness, and decision-making self-efficacy. Caregivers (n = 294) averaged 66 years, were mostly female (72.8%), white (91.2%), Protestant (76.2%), retired (54.4%), and patients' spouse/partner (60.2%). Approximately, half were rural-dwellers (46.9%) with incomes 1 year (68%). Nearly a quarter (23%) reported high depression and 34% reported borderline or high anxiety. Low engagement in all self-care practices was associated with worse caregiver anxiety, depression, and mental HRQoL (all p values Caregivers with lower health responsibility, spiritual growth, interpersonal relation, and stress management scores had lower preparedness and decision-making self-efficacy. A significant proportion of caregivers simultaneously report low engagement in all forms of self-care practices, high depression and anxiety, and low HRQoL mental health scores. Caregiver well-being, preparedness, and decision-making self-efficacy might be optimized through interventions targeted at enhancing health responsibility, stress management, interpersonal relationships, and spiritual growth self-care practices.
Phillips, Beth M.; Morse, Erika E.
This paper presents findings from a stratified-random survey of family child care providers' backgrounds, caregiving environments, practices, attitudes, and knowledge related to language, literacy, and mathematics development for preschool children. Descriptive results are consistent with prior studies suggesting that home-based providers are…
Barrera-Ortiz, Lucy; Carrillo-González, Gloria M; Chaparro-Díaz, Lorena; Afanador, Natividad P; Sánchez-Herrera, Beatriz
The study was aimed at determining the effectiveness of social support using information and communication technology (ICT) for family caregivers regarding people suffering chronic disease. This descriptive exploratory study involving 144 family caregivers for people suffering from chronic disease was carried out in Bogota during 2008 and 2009. It was carried out in three phases: planning and designing ICT strategies (including a pilot trial and selecting the target population), implementing the ICTs in support of the target population and data analysis regarding implementing the ICTs, with a description of the indicators of structure and process for ICT use and results of ICT use in providing social support. G. Hilbert's Social support in chronic disease inventory (SSCI) was used for measurements, including the following categories: personal interaction, guide, feedback, tangible help and social interaction. ICT-based intervention was effective and proved positive for social support for most family caregivers. While analysing the different categories, the guide, information and instruction and personal interaction received high scores while feedback and social interaction received lower ones. Identifying and designing appropriate ICTs for family caregivers should be continued and supported in different contexts and tools such as internet and on-line social support networks should continue being explored.
A.E. Prick; Dr. P.D.D.M. Roelofs; Dr. J. de Lange; M.A. van 't Leven; A.M. Pot; Dr. J.H. Groenewoud
Background: In this review, we study the effects of dyadic psychosocial interventions focused on communitydwelling people with dementia and their family caregivers, and the relationship of the effects with intervention components of programs. Methods: A search from January 2005 to January 2012 led
Mancussi e Faro, A C
This study proposes a basis survey for assistance to the family and caregivers because we believe there is necessity of family participation on the treatment, trying to understand and share the disease or deficiency situation. We objectified to sketch the relationship degree and the people's gender that accompanied the spinal cord injured hurt medular patient in nursing consultations and to discuss the necessity of basis survey to the assistance family and to the caregiver. 101 nursing consultations were accomplished, in clinic health, to the spinal cord injured patient and his/her relative and 36 patients were totalized, from this number 26 (72.22%) were male and 10 (27.78%), were female. It was verified that the men with medular lesion, in the greater number (27-80.7 O/o), were accompanied with his relatives specially mother and wife, while the women with medular lesion, in the greater number too (7-70%) were accompanied with her relatives of diversified proximity. In reference to the basis survey that comprehend the care at house and the caregiver necessity, we can affirm its relevance, trying to context the family support identified attending the caregivers.
Kiriake, Ayumi; Moriyama, Michiko
This article reports the development and preliminary testing of a new scale named "Partnership Scale for Primary Family Caregivers Caring for Patients With Dementia" that measures the ability of primary family caregivers to establish partnerships while providing care for patients with dementia in Japan. The first draft of the scale was developed using qualitative data from interviews with five primary family caregivers; a pool of 39 items was created through a review process with dementia care experts and researchers. An exploratory factor analysis and confirmatory factor analysis were conducted with data from 261 primary family caregivers who completed the instrument. This resulted in a multidimensional scale that consists of three factors with 13 items. The suitability of the model and intraclass correlation coefficient (ICC) values (1, 1) obtained by the test-retest method satisfied statistical standards. The criterion-related validity of the scale was significantly correlated to an external reference, which was the desired outcome. However, some subscales exhibited low internal consistency, demonstrating the need for further research. © The Author(s) 2016.
Judge, Katherine S.; Bass, David M.; Snow, A. Lynn; Wilson, Nancy L.; Morgan, Robert; Looman, Wendy J.; McCarthy, Catherine; Kunik, Mark E.
Purpose: This article provides a detailed description of a telephone-based care coordination intervention, Partners in Dementia Care (PDC), for veterans with dementia and their family caregivers. Essential features of PDC included (a) formal partnerships between Veterans Affairs (VA) medical centers and Alzheimer's Association Chapters; (b) a…
Conceição, Simone C.O.; Johaningsmeir, Sarah; Colby, Holly; Gordon, John
This article describes an initiative to train lay people, predominantly parents of children and youth with special health care needs (CYSHCN), to teach "Bridge to Independence"--a care coordination curriculum--to other family caregivers of CYSHCN. Using a model based on Kirkpatrick and Kirkpatrick's levels of evaluation, the goal…
Mansoureh Ashghali Farahani
Full Text Available Background: Studies suggest that family caregivers of hemodialysis patients experience a high level of burden, which could lead to numerous physical and psychological problems. Despite the need for adequate training and support, these caregivers are mostly neglected, and few studies have been performed in this regard. Aim: to evaluate the effect of educational programs on the home care of hemodialysis patients and burden of their family caregivers. Method: This randomized controlled clinical trial was conducted on 76 caregivers of hemodialysis patients referred to Shahid Hasheminejad Hemodialysis Center of Tehran, Iran in 2015. Subjects were divided into two groups of intervention and control (n=38. The intervention group received four training sessions on the home care of hemodialysis patients for two weeks, and the control group received routine care. Data were collected using the Caregiver Burden Inventory (CBI at the beginning and six weeks after the intervention. Data analysis was performed in SPSS V.21 using Chi-square, Fisher’s exact test, independent and paired T-test, and Mann-Whitney U test. Results: In this study, no significant difference was observed between the two groups in terms of demographic characteristics. At the baseline, mean score of caregiver burden in the intervention and control groups was 88.5±11.7 and 84.9±15.1, respectively, and no significant difference was observed between the groups in this regard (P=0.30. Six weeks after the intervention, the results of independent T-test revealed a significant difference between the mean scores of caregiver burden in the intervention (58.7±6.6 and control groups (87.8±11.7 (P
Paun, Olimpia; Farran, Carol J; Fogg, Louis; Loukissa, Dimitra; Thomas, Peggy E; Hoyem, Ruby
Dementia caregivers do not relinquish their role after placing family members in long-term care and they experience increased chronic grief. The Chronic Grief Management Intervention (CGMI) is a12-week group-based program that uses guided discussion to deliver knowledge of Alzheimer's or a related dementia and teach skills in communication, conflict resolution, and chronic grief management in dementia caregivers who placed their family members in long-term care. Using a quasi-experimental design, 83 caregivers from 15 long-term care facilities received either the CGMI (n = 34) or a comparison condition consisting of two check-in calls (n = 49). In this pilot study, we examined the feasibility of implementing the CGMI and evaluated the effects of the intervention on caregivers' knowledge and skill and their chronic grief and depression. The intervention was feasible and resulted in significant improvement in caregivers' heartfelt sadness and longing at 3 months and a significant drop in their guilt at the 6-month follow-up. © The Author(s) 2014.
Butcher, Howard K; Gordon, Jean K; Ko, Ji Woon; Perkhounkova, Yelena; Cho, Jun Young; Rinner, Andrew; Lutgendorf, Susan
This study tested the effect of written emotional expression on the ability to find meaning in caregiving and the effects of finding meaning on emotional state and psychological burden in 91 dementia family caregivers. In a pretest-posttest design, participants were randomly assigned to either an experimental or a comparison group. Experimental caregivers (n = 57) wrote about their deepest thoughts and feelings about caring for a family member with dementia, whereas those in the comparison group (n = 34) wrote about nonemotional topics. Results showed enhanced meaning-making abilities in experimental participants relative to comparison participants, particularly for those who used more positive emotion words. Improved meaning-making ability was in turn associated with psychological benefits at posttest, but experimental participants did not show significantly more benefit than comparison participants. We explore the mediating roles of the meaning-making process as well as some of the background characteristics of the individual caregivers and their caregiving environments. © The Author(s) 2016.
Deusivania Vieira da Silva Falcão
Full Text Available In this regard, investigating these aspects might facilitate the evaluation of family relations and the development of interventions that create, keep, restore, or enhance the skills families need to better deal with the disease. Based on this information, the objective of this chapter is to present and discuss investigative research on family cohesion and hierarchy from the perspective of caregiver daughters of elderly with Alzheimer’s in four situations: before the disease, currently, in conflict, and ideally. 32 women caretakers and their respective parents (6 fathers and 26 mothers diagnosed with possible or probable AD participated in the survey. The instruments used were the Mini-Mental State Examination (MMSE in an Open Interview with a Semi-Structured Script, and the Family System Test (FAST. We observed that before onset of the disease, the caregivers generally perceived themselves to have more hierarchy than their siblings, χ2(2 = 4.92, p < .10. The current situation showed a greater number of caregivers in higher hierarchical positions than their siblings (72%, and a lesser number of siblings than expected in higher hierarchical positions than the caregivers, χ2(2 = 18.32, p < .001. The ideal representation showed that most caregivers did not want themselves or any of their siblings to have more power than the other (66.7%, χ2(2 = 14.89, p < .001. Comparing conflict representations to ideal representations showed that family members demonstrated lower cohesion in conflict situations than in ideal situations, z = -2.86, p < .01.
... as wounded warriors. Friends and relatives form networks to support loved ones with disabilities. All of them give selflessly to bring comfort, social engagement, and stability to those they love. Family... Administration continues to support these committed individuals through programs like the National Family...
Blom, Marco M; Zarit, Steven H; Groot Zwaaftink, Rob B M; Cuijpers, Pim; Pot, Anne Margriet
The World Health Organization stresses the importance of accessible and (cost)effective caregiver support, given the expected increase in the number of people with dementia and the detrimental impact on the mental health of family caregivers. This study assessed the effectiveness of the Internet intervention 'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at baseline, were randomly assigned to two groups. Caregivers in the experimental group (N = 149) were compared to caregivers who received a minimal intervention consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety and Depression Scale: HADS-A). All data were collected via the Internet, and an intention-to-treat analysis was carried out. Almost all caregivers were spouses or children (in-law). They were predominantly female and lived with the care recipient in the same household. Age of the caregivers varied from 26 to 87 years. Level of education varied from primary school to university, with almost half of them holding a bachelor's degree or higher. Regression analyses showed that caregivers in the experimental group showed significantly lower symptoms of depression (p = .034) and anxiety (p = .007) post intervention after adjustment for baseline differences in the primary outcome scores and the functional status of the patients with dementia. Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive symptoms (.26). The Internet course 'Mastery over Dementia' offers an effective treatment for family caregivers of people with dementia reducing symptoms of depression and anxiety. The results of this study justify further development of Internet interventions for family caregivers of people with dementia and suggest that such interventions are promising for keeping support for family caregivers accessible and affordable. The findings are even more promising
Raggi, Alberto; Tasca, Domenica; Panerai, Simonetta; Neri, Walter; Ferri, Raffaele
Many patients with dementia live in the community and depend on a family member for assistance. Taking care of non-self-sufficient people such as those with dementia causes distress. This study concerns factors contributing to feelings of burden and consequent coping strategies adopted by family caregivers of patients with Alzheimer's disease living in the community. The severity of the caregiver burden (Caregiver Burden Inventory and the Neuropsychiatric Inventory Caregiver Distress Scale) was evaluated in relation to the cognitive, behavioral, functional, mood, motor and comorbidity status in 73 consecutive patients with Alzheimer's disease. The type of coping processes (Coping Orientation to Problem Experienced), and psychosocial and medical variables of caregivers were also investigated and correlated with the degree of their distress. The amount of burden for caregivers, was found to be positively correlated with several measures of cognitive, psychological, behavioral, and motor impairment of the patients. The severity of caregiver distress was correlated with specific coping strategies, such as seeking for social support, using avoidance behaviors and focusing on problems. Finally, caregivers needing higher levels of familial and/or social support had also higher levels of distress. Higher cognitive, psychological, behavioral, and motor impairment of patients with Alzheimer's disease are associated with increasing levels of burden and distress in their caregivers, who need to adopt adequate coping strategies and to seek for familial and social support. Copyright © 2015 Elsevier B.V. All rights reserved.
Full Text Available Abstract Background Brief family intervention may have a positive impact on family caregivers for patients with mental disorders. We assessed the effectiveness of a group psycho-educational program on family caregivers for patients with schizophrenia and mood disorders. Methods This randomized controlled trial was performed on 100 caregivers for patients with mental disorders attending the Isfahan Behavioral Sciences Research Center (IBSRC, in Isfahan, Iran. One hundred family caregivers of patients with schizophrenia (n = 50 and mood disorders (n = 50 were selected and assigned randomly to either a psycho-educational group intervention or routine care in each diagnosis category. The caregivers were followed for 3 months. Caregiver burden was assessed using the Zarit Burden Interview Results The mean scores of the Zarit caregiver burden decreased significantly for the group that participated in the psycho-educational program, while scores in the control group did not change significantly. Conclusions This group intervention program was effective to reduce the caregiver burden for both categories of mental disorders in the Iranian population. This group intervention program may improve the quality of life of patients and caregivers by improving the standards of care giving. Trial registration RCT registration number: IRCT138804272200N
Bailes, Christine O; Kelley, Colleen M; Parker, Nadine M
To identify if there is a relationship between perceived health competence and burden of care of informal caregivers of family members with Alzheimer's disease and related dementia (ADRD). Informal caregivers 18 years and older who received services from the Alzheimer's Resource of Alaska were invited to complete a survey. Findings indicate that there was a negative correlation between perceived health competence and burden of care (N = 64, r = -.54, p Caregiver Burden Scale: objective burden (r = -.65, p = caregiver burden and the perception of decreased health competence, nurse practitioners (NPs) can play an important role in assessing caregiver burden. The results of this study enlighten NPs about informal caregiver burden and will help guide discussions and assessments during routine healthcare visits with the goal of achieving optimal health for informal caregivers. ©2016 American Association of Nurse Practitioners.
Lynch, J; Cahalan, R
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.
Sousa, Lia; Sequeira, Carlos; Ferré-Grau, Carme; Neves, Pedro; Lleixà-Fortuño, Mar
To establish primary features of training programmes designed to assist family caregivers of people with dementia living at home and to propose a model programme based on literature findings. Due to dementia's distinctive progression, there is a widely felt need to train family members who undertake the responsibility of caring for relatives diagnosed with this condition to provide positive care, particularly during the early and middle stages of the disease. Integrative review. Literature reviews were carried out in the Pubmed, CINAHL, Mediclatina and Medline databases, using the following describers: training programme, family caregivers, dementia and aged. Such searches encompassed publications between 2004-2014, together with eight articles for review due to their positive identification with the inclusion criteria. Relevant results were extracted, the subsequent analysis performed and the presentation carried out in a descriptive manner. The prevailing length of a training programme for a family caregiver of people with dementia is of six sessions over a six-week period, with one weekly session load, and an average duration of 100 minutes each. Methodologies most commonly used include discussion, problem-solving models as well as skills and strategies training. The themes discussed comprehend caring for the individual with dementia, information about the illness and the use of health and community resources. Regarding the assessment of the family caregiver, the most widely used instruments are demographic assessment questionnaires, self-efficiency and caregiver's burnout scales, as well as depression and quality of life measures. Three assessment instances of family caregivers' needs during the training programme are commonly encountered: initial, final and follow-up. This review has identified a set of features transversal to training programmes for family members who undertake the care for individuals with dementia living at home, which will bolster the
Full Text Available Purpose: The aim of the study was to examine the relationship between social support and coping of family caregivers caring for persons with schizophrenia in West Java Province, Indonesia. Methods: This study used the correlational design. Eighty eight family caregivers who cared for persons with schizophrenia were recruited from the Outpatient Department of West Java Province Mental Hospital, West Java, Indonesia through purposive sampling technique. Data were collected by self-report questionnaires using the Perceived Social Support Questionnaire (PSSQ and the Jalowiec Coping Scale (JCS. Then, data was analyzed by descriptive and Pearson’s product-moment correlation statistic.Results: Overall social support was perceived at a moderate level. The most often coping methods used was optimistic optimistic, followed by self-reliant coping, confrontative coping, and supportant coping. There were significant positive correlation between social support and confrontative coping (r = .68, p < .01, optimistic coping (r = .42, p < .01, and supportant coping (r = .46, p < .01. Social support was significantly and negatively correlate with evasive coping (r = -.52, p < .01 and fatalistic coping (r = -.41, p < .05.Conclusion: For nurses, providing social support including emotional, informational, instrumental, and appraisal support were to be important for caregiver to determine effective coping strategies. Key words: Social support, coping, family caregiver, schizophrenia
Oh, Young Sam
The purpose of this research is to investigate various factors predicting online health information seeking for themselves (self OHIS) and online health information seeking for others (surrogate OHIS) in family caregivers to cancer survivors. To address this purpose, this study applies the comprehensive model of information seeking as a theoretical framework for explaining the relationships between various predictors and two types of OHIS. The data used in this study were taken from the Health Information National Trends Survey 4. A total of 1,113 family caregivers were included in this study. Logistic regression analyses were conducted to examine the effects of predictors on Internet use for health information seeking. Caregivers' self and surrogate OHIS were commonly predicted by their self-rated health and attention to the Internet. However, age, race, and education were significantly associated with self OHIS only, while gender and marital status were significantly associated with surrogate OHIS only. These results suggest that family caregivers' self and surrogate OHIS are predicted by common factors, as well as predicted by different specific factors.
Hazif-Thomas, C; Thomas, P; Tritschler-LeMaître, M-H; Walter, M
While living in a period easily characterized by the self-actualization of the patient as the support of a non-professional valuation, it seems useful to evaluate the situation concerning the limits of the involvement of the non-professional caregivers who take care of dependent or disabled persons. They become involved in the course of care in order to protect their relative the best way they can. This involvement has an influence on the evolution of the care, particularly from a psychic point of view, as well as in the way any medical act will be conducted. This work analyses the French legal context, reflecting the practical experience of the gerontopsychiatric teams. A legal point is established on the outlines of the voluntary help provided by the relatives and/or close friends. The approach, aiming at recognizing the family caregivers as such and bearing in mind that they can almost become the persons' guardians if need be, cannot but provoke several ethical issues as well as difficulties concerning the way of taking care of the patient. The difficulties the caregivers may have are in a way related to the lack of clear legal definitions of the medical act, as well as to the lack of definitions of the tasks one may expect from the family caregiver. This lack also shows the difficulties the law-maker is confronted with when defining what concerns the natural family care and what concerns the collective solidarity. The evolution of the role of caregivers in our society, which must face the pandemic of chronic diseases, thus means an evolution in the substantive law in the field of family care. Copyright © 2012 L’Encéphale, Paris. Published by Elsevier Masson SAS. All rights reserved.
Folle, Aline Duarte; Shimizu, Helena Eri; Naves, Janeth de Oliveira Silva
To understand the content of Social Representation (SR) of family caregivers of Alzheimer's disease patients. Interviews were conducted with 26 caregivers and analyzed by the ALCESTE software. The SR content was structured in two thematic axes called Daily Life and Care and Medical and Emotional Concepts and Outcomes. The first axis creates images related to the routine of interaction with the sick person, and contains a description of care procedures, experiences, and practices applied every day. The second is composed of subjective and conceptual aspects that make up the social representation of Alzheimer's disease, with meanings related to the emotional, medical, and biological contexts. Due to the importance of topics related to patients' dependence and the personal and emotional consequences of the disease, overload is the main content of the SR of Alzheimer's disease for caregivers, and the understanding of these SR by health professionals should support the planning of interventions addressing this group of individuals.
Peng, Hsi-Ling; Lorenz, Rebecca A; Chang, Yu-Ping
Poor sleep quality in family caregivers may impact their health status and cause quality of life to decline. Nurses are conducting an increasing number of studies that use sleep quality or related concepts as a main indicator to assess caregiver's sleep. Therefore, a clear understanding of sleep quality and how it is different from other relevant sleep domains is essential. This article aimed to analyze the concept of sleep quality using the steps outlined by Walker and Avant. Findings include (a) attributes of sleep quality including subjective perception of sleep, sleep hours, and evaluation of activity after awaking; (b) antecedents of sleep quality including the ability to get naturally into the sleep cycle and status of conscious state; and (c) consequences of sleep quality including bio-psycho-social and global dimensions of health. This article intends to help clinicians and researchers better understand and define sleep quality in dementia caregivers. © The Author(s) 2015.
Moreno-Cámara, Sara; Palomino-Moral, Pedro Ángel; Moral-Fernández, Lourdes; Frías-Osuna, Antonio; Del-Pino-Casado, Rafael
To identify and analyse problems in adapting to change among the family caregivers of relatives with dementia. Qualitative study based on the methodology of Charmaz's Constructivist Grounded Theory. Seven focus groups were conducted in different primary health care centres in the province of Jaen (Spain). Eighty-two primary family caregivers of relatives with dementia participated by purposeful maximum variation sampling and theoretical sampling. Triangulation analysis was carried out to increase internal validity. We obtained three main categories: 'Changing Care', 'Problems in the process of adapting to change' and 'Facilitators of the process of adapting to change'. Family caregivers perform their role in a context characterized by personal change, both in the person receiving the care and in the social and cultural context. The challenge of adaptation lies in the balance between the problems that hamper adaptation of the caregiver to new situations of care and the factors that facilitate the caregiver role. The adaptation of family caregivers to caring for a person with dementia is hindered by the lack of formal support and under-diagnosis of dementia. The adaptation process could be improved by strengthening formal support in the early stages of care to reduce the stress of family caregivers who must teach themselves about their task and by interventions adapted to each phase in the development of the caregiver role. Copyright © 2016 SESPAS. Published by Elsevier Espana. All rights reserved.
Shaffer, Kelly M.; Kim, Youngmee; Llabre, Maria M.; Carver, Charles S.
This study examined how stress from cancer affects fruit and vegetable consumption (FVC) in cancer patients and their family caregivers during the year following diagnosis. Colorectal cancer patients and their caregivers (92 dyads) completed questionnaires at two (T1), six (T2), and 12 months post-diagnosis (T3). Individuals reported perceived cancer-related stress (CRS) at T1 and days of adequate FVC at T1 through T3. Both patients and caregivers reported inadequate FVC during the first year...
Austrom, Mary Guerriero; Lu, Yvonne
The purpose of the paper is to describe common psychological and caregiving issues that can cause stress in family members of persons with mild cognitive impairment (PwMCI) in order to assist family members in providing care and support to the PwMCI while also caring for themselves over long periods of time. Because PwMCI and their family members have time to prepare for the future should the PwMCI no longer be able to participate in their own care, it is important that clinicians offer support, education, and referrals for services and interventions when needed. The results of a review and synthesis of the caregiving literature found that much information exists from educational and intervention programs designed to help caregivers of Alzheimer disease however little empirical information is available for clinicians to assist PwMCI and their family members. This paper provides valuable and practical information for clinicians and other care providers to assist family members of PwMCI to cope with the uncertainty of the diagnosis, prepare for the future, and manage their stress over the long-term. PMID:19689239
Mosher, Catherine E; Ott, Mary A; Hanna, Nasser; Jalal, Shadia I; Champion, Victoria L
Advanced lung cancer patients have high rates of multiple physical and psychological symptoms, and many of their family caregivers experience significant distress. However, little is known about strategies that these patients and their family caregivers employ to cope with physical and psychological symptoms. This study aimed to identify strategies for coping with various physical and psychological symptoms among advanced, symptomatic lung cancer patients and their primary family caregivers. Patients identified their primary family caregiver. Individual semi-structured qualitative interviews were conducted with 21 advanced, symptomatic lung cancer patients and primary family caregivers. Thematic analysis of interview data was framed by stress and coping theory. Patients and caregivers reported maintaining a normal routine and turning to family and friends for support with symptom management, which often varied in its effectiveness. Whereas support from health-care professionals and complementary and alternative medicine were viewed favorably, reactions to Internet and in-person support groups were mixed due to the tragic nature of participants' stories. Several cognitive coping strategies were frequently reported (i.e., changing expectations, maintaining positivity, and avoiding illness-related thoughts) as well as religious coping strategies. Results suggest that advanced lung cancer patients and caregivers may be more receptive to cognitive and religious approaches to symptom management and less receptive to peer support. Interventions should address the perceived effectiveness of support from family and friends.
Navab, Elham; Negarandeh, Reza; Peyrovi, Hamid
This study aimed to understand the experiences of Iranian family caregivers of persons with Alzheimer's disease. Increasing rate of Alzheimer's disease along with the ageing population has made this disease an urgent public health challenge worldwide. As non-professional caregivers, family members play a significant role in delivering care to elders, most of whom have one or more chronic diseases. Family-based caregiving has expanded with the encouragement of non-institutionalisation but at the same time creates challenges for caregivers. A qualitative study was conducted using Heideggerian hermeneutic phenomenology. Eight Iranian family caregivers of persons with Alzheimer's disease were interviewed. Interviews were audio-taped and transcribed; data were analysed by Van Manen's methodology. One of the most important themes that emerged was 'captured in the whirlpool of time', which also contained the subthemes of 'reminiscence of past' and 'being afraid of the future'. Family caregivers frequently remembered their common past experiences when interacting with their loved ones with Alzheimer's disease, as though travelling with him/her to the past. Furthermore, caregivers continually compared the past abilities of their relative with their present condition, which resulted in feelings of loss and regret. Further, the unpredictable nature of Alzheimer's disease created fear about the future deterioration of the condition and caregivers' future suffering. The findings demonstrated the necessity of providing continuous education and support for family caregivers of persons with Alzheimer's disease. Nurses are among front-line professionals who are in a position to support and provide information for family caregivers of persons with Alzheimer's disease. © 2012 Blackwell Publishing Ltd.
ÇETİNKAYA DUMAN, Zekiye; KUŞCU, M. Kemal; ÖZGÜN, Serkan
Introduction The aim of the study was to compare the Camberwell Family Interview (CFI) and the Expressed Emotion Scale (EES) in determining the level of expressed emotion in caregivers of patients with schizophrenia. Method The study sample included caregivers of 22 schizophrenic patients followed in two psychiatric clinics. The level of expressed emotion in the caregivers was assessed by the CFI and the EES. CFI was applied to caregivers of the inpatients and the procedure was audio recorded. These records were later used for the ratings. EES was completed by the caregivers. Total EES scores were used to determine the level of expressed emotion in the caregivers. Results Forty point nine percent and 50% of the caregivers had high level of expressed emotion based on the analysis of the data obtained from the CFI and EES. Fifty-nine percent and 50% of the caregivers had low level of expressed emotion based on the data obtained from the CFI and EES. The proportion of the caregivers with high level of expressed emotion as measured by the CFI and the EES were not statistically significantly different within the sample (χ2= 0.727). Conclusion The CFI and the EES were similar in determining the level of expressed emotion in caregivers of schizophrenic patients. It can be suggested that the EES, a user friendly tool, may be preferred to determine the level of expressed emotion in caregivers of patients with schizophrenia. However, further studies with larger samples are needed to obtain more reliable results. PMID:28360561
Bachner, Yaacov G; O'Rourke, Norm; Carmel, Sara
Previous research suggests that caregivers and terminally ill patients face substantial difficulties discussing illness and death. Existing research, however, has focused primarily on the experience of patients. The current study compared responses as well as the relative strength of association between mortality comunication, fear of death, and psychological distress (i.e., depressive symptomatology, emotional exhaustion) among secular and religiously observant family caregivers of terminally ill cancer patients. A total of 236 participants were recruited over 18 months within the first year of caregiver bereavement. Retrospectively reported mortality communication was statistically greater among secular caregivers; in contrast, both fear of death and depressive symptoms were greater among the religiously observant. Path analyses subsequently revealed notable differences between groups. Among secular caregivers, a significant inverse relationship between mortality communication and the two indices of caregiver distress emerged. In contrast, the association between mortality communication and psychological distress among the religious was moderated by these caregivers' fear of death. The results of this study suggest that fear of death is a significant predictor of psychological distress among religiously observant caregivers of terminal cancer patients (i.e., fear of their own death as elicited by the caregiving role). Fostering morality communication between secular caregivers and patients would appear to be one means of reducing the likelihood of clinically significant psychological distress. This may be insufficient among religiously observant caregivers, however, for whom fear of death may first need to be redressed.
Chiu, Teresa M L; Eysenbach, Gunther
The purpose of this qualitative study was to improve understanding of family caregivers' use of Web-based intervention support by integrating three theoretical models. The study applied the Anderson's model of health service utilization, Venkatesh's theory of technology acceptance, and Chatman's and Wilson's information behavior theories. This qualitative study is part of a larger study. An interpretive grounded theory approach was used to conduct in-depth interviews with Chinese caregivers of family members with dementia. The caregivers received Internet-based information support and personalized e-mail intervention. A purposive sample of fourteen caregivers was selected to participate in the interviews. Constant comparison, analytic memoing, case analysis, and concept mapping were used to conduct theoretical triangulation analysis. Three main factors influenced the use of the intervention: (a) caregiver needs, which are influenced by personal capacity, social support available, and caregiving belief; (b) information communication technology (ICT) factors, including accessibility barriers and perceived efforts to use the technology; and (c) style of using the technology, such as preference for using e-mail or the customized Website. The personal capacity of caregivers was influenced by many factors, including computer and language proficiency, health service knowledge, caregiving competence and competing roles and responsibilities. Social support available for caregivers included available computer, language or caregiving support and health service knowledge. Caregiving belief included traditional belief of giving care, and health belief of the illness. New caregivers needed a different kind of support intervention compared with experienced caregivers. Caregivers with different amounts of experience tended to have different learning styles, with new caregivers preferring interactive intervention and more experienced caregivers preferring more reflective learning
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.
Roscoe, Lori A; Corsentino, Elizabeth; Watkins, Shirley; McCall, Marcia; Sanchez-Ramos, Juan
The utility of a stress-process model in predicting health and quality-of-life outcomes for family caregivers of persons with Huntington's disease (HD) was tested. HD is an inherited neurodegenerative disease that poses particular challenges to patients and families. Seventeen family caregivers were interviewed and completed scales measuring stressors, appraisals, protective factors, and outcomes. No direct relationship between stress and caregiver well-being was found; the impact of stressors was mediated by appraisals and protective factors. Bivariate correlation analysis revealed significant positive relationships between satisfaction with emotionally supportive communication and life satisfaction. Significant positive correlations were found between positive appraisals of the benefits of the caregiving experience and life satisfaction and health. Mastery was significantly positively correlated with life satisfaction and negatively correlated with depressive symptoms; similar results were found between spirituality and outcome measures. Caregivers' interpretations appeared to have a more significant impact on well-being than did objective characteristics of the experience.
del-Pino-Casado, Rafael; Pérez-Cruz, Margarita; Frías-Osuna, Antonio
To investigate relationships between anxiety and stressors,coping and subjective burden and to contribute to defining factors related to anxiety among family caregivers of older dependents. Despite the studies analysing factors related to anxiety in caregivers, there is not enough evidence about this issue. Cross-sectional design. Data from 140 family caregivers (convenience sample) were analysed using descriptive statistics, correlation coefficients and path analysis. Socio-demographic data and several scales (Barthel Index, Short Portable Mental Status Questionnaire, Cummings Neuropsychiatric Inventory, Brief COPE, Caregiver Strain Index and Hamilton Anxiety Rating Scale) were used to collect data. Stressors (psychiatric and psychological symptoms and number of assisted activities of daily living), emotion-focused coping, dysfunctional coping and subjective burden were related to greater anxiety. Subjective burden mediated the effects of psychiatric and psychological symptoms on anxiety and partially mediated the effects of dysfunctional coping on anxiety. Stressors, dysfunctional coping and subjective burden were identified as factors related to anxiety. The mediating role of subjective burden in the relationship between dysfunctional coping and anxiety was supported. The effect of dysfunctional coping on anxiety was independent of the stressors. These conclusions justify several recommendations regarding nursing interventions for family caregivers of older dependents: (1) stressors,dysfunctional coping and subjective burden can be used in clinical practice for early detection of and early intervention for anxiety; (2) to prevent subjective burden and anxiety,approach-coping skills should be promoted through interventions such as problem-solving,positive reappraisal, assertiveness and control of negative thoughts; (3) these interventions for dysfunctional coping should be systematically developed for individuals with dysfunctional coping regardless of the level
Rullier, Laetitia; Lagarde, Alexia; Bouisson, Jean; Bergua, Valérie; Barberger-Gateau, Pascale
The objective of this study was to explore the associations of individual characteristics of both older people with dementia and family caregivers with the nutritional status of older people with dementia. This cross-sectional study comprising 56 community-dwelling older persons with dementia and 56 family caregivers was conducted at home by a psychogerontologist working for a community gerontological center. Older people with dementia were assessed with Mini mental state examination, Instrumental Activities of Daily Living, Activities of Daily Living (ADL), and NeuroPsychiatric Inventory (NPI) and family caregivers with the Burden Interview (Zarit scale), the State-Trait Anxiety Inventory, the Center for Epidemiologic Studies Depression Scale, and the emotional impact measure of NPI. For both, nutritional status was evaluated using the Mini Nutritional Assessment (MNA). Among older people with dementia, 58.9% were at risk of malnutrition and 23.2% presented a poor nutritional status, and among the family caregivers, 32.1% and 5.4%, respectively. The MNA score of older people with dementia was strongly and inversely associated with the ADL score and was strongly and positively associated with the MNA score of family caregiver. These two factors significantly explained 32% of variation of MNA score of older people with dementia. These findings confirm the value of investigating nutritional deficiencies in dementia within the caregiving dyad and suggest that the functional status of older people with dementia and the nutritional status of family caregivers should be carefully assessed. Copyright © 2012 John Wiley & Sons, Ltd.
Dorant, Elisabeth; Krieger, Theresia
Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.
Jeong Sun Kim, RN, PhD
Conclusions: The study provides the essential structure of the experience on dementia-related anxiety that caregivers of a family member with dementia have. The findings could help healthcare providers and researchers have better understanding of dementia-related anxiety and give more attention to the caregivers to relieve their anxiety.
Bazondlile D. Marimbe
Conclusion: Caregivers carry a substantial and frequently unrecognized burden of caring for a family member with mental disorder. Better support is needed from health professionals and social services to help them cope better. Further research is required to quantitatively measure caregiver burden and evaluate potential interventions in Zimbabwe.
Marziali, Elsa; Donahue, Peter
Purpose: The aim of this pilot feasibility study was to evaluate the effects of an innovative, Internet-based psychosocial intervention for family caregivers of older adults with neurodegenerative disease. Design and Methods: After receiving signed informed consent from each participant, we randomly assigned 66 caregivers to an Internet-based…
Blom, M.M.; Zarit, S.H.; Groot Zwaaftink, R.B.M.; Cuijpers, P.; Pot, A.M.
Background: The World Health Organization stresses the importance of accessible and (cost)effective caregiver support, given the expected increase in the number of people with dementia and the detrimental impact on the mental health of family caregivers. Methods: This study assessed the
COPING WITH CHRONIC STRESS: Family members are the first-line caregivers for elderly patients with dementia living at home. Giving care to a demented patient has an important impact on the mood, quality-of-life, physical and psychological health of family aids: frequent episodes of depression, immunity disorders, altered capacity for wound healing, increased consumption of psychotropic drugs and increased mortality. INTERVENTIONS FOR FAMILY AIDS: Helping family caregivers is an integral part of modern care for Alzheimer's disease: social and financial support, medical assistance. Several specific interventional programs have been proposed, either alone or as part of a multiple-component program: educational sessions, group support, psychotherapy, respite care. NECESSARY DEVELOPMENTS: The results of studies assessing the effects of different types of interventions have shown that they reduce the cure giver's burden and depression, and patient's symptoms while improving the caregiver's feeling of well-being and his/her knowledge, and competence. Multiple-component interventions are the most effective. Research in this area should be developed in France, including an examination of the feasibility of such studies which are highly dependent on the cultural and social context of care as well as on the efficacy and the cost of the interventions.
Gamondi, C; Pott, Murielle; Preston, Nancy; Payne, Sheila
Thousands of family members worldwide are annually involved in assisted dying. Family participation in assisted dying has rarely been investigated and families' needs typically are not considered in assisted dying legislation and clinical guidelines. To explore family caregivers' reflections on experiences of assisted suicide in Switzerland. A cross-sectional qualitative interview study conducted in the Italian- and French-speaking regions of Switzerland. Interpretation and analysis were performed using qualitative content analysis. Twenty-eight close relatives and family carers of 18 patients who died by assisted suicide in Switzerland were interviewed. Family members perceived their involvement in assisted suicide as characterized by five phases; 1) contemplation, 2) gaining acceptance, 3) gaining permission, 4) organization, and 5) aftermath. Families can participate in these phases at diverse levels and with varying degrees of involvement. Important triggers for families and patients for transition between phases include patients' experiences of their life-threatening illnesses and related treatments, their increasing awareness of approaching death, and family member recognition of their loved one's unbearable suffering. Participating in assisted suicide created further demanding tasks for families in addition to their role of caregivers. Families appeared to be involved in the preparation of assisted suicide along with patients, irrespective of their personal values regarding assisted dying. Support for family members is essential if they are involved in tasks preparatory to assisted suicide. Clinical guidelines and policies concerning assisted dying should acknowledge and address family needs. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Faucher, Mary Ann; Garner, Shelby L
The purpose of this manuscript is to compare methods and thematic representations of the challenges and supports of family caregivers identified with photovoice methodology contrasted with content analysis, a more traditional qualitative approach. Results from a photovoice study utilizing a participatory action research framework was compared to an analysis of the audio-transcripts from that study utilizing content analysis methodology. Major similarities between the results are identified with some notable differences. Content analysis provides a more in-depth and abstract elucidation of the nature of the challenges and supports of the family caregiver. The comparison provides evidence to support the trustworthiness of photovoice methodology with limitations identified. The enhanced elaboration of theme and categories with content analysis may have some advantages relevant to the utilization of this knowledge by health care professionals. Copyright © 2015 Elsevier Inc. All rights reserved.
Taverner, Tarnia; Baumbusch, Jennifer; Taipale, Priscilla
Often older people, while maintaining a level of independence, rely on family members to provide care and assistance. Caregivers who are also registered nurses (RNs) may provide a different perspective around the experience when their older relative is admitted to acute care. The aim of our research was to investigate and develop theory regarding nursing care provision as described by RNs, who were family caregivers to older adults, when that older adult was admitted to acute care. Over a six-month period in 2011, RNs meeting this criterion (n = 12) were interviewed individually. We identified two central categories: "Culture of Neglect" and "Vigil by the Bedside". The core category "Normalization of Neglect" was identified as the theory, grounded in the data the participants provided which described a culture of neglect that had normalized poor nursing care. These findings highlight the issue of neglect and abuse, and further investigation is warranted.
Nåden, Dagfinn; Høy, Bente; Lohne, Vibeke
The overall purpose of this cross-country Nordic study was to gain further knowledge about maintaining and promoting dignity in nursing home residents. The purpose of this article is to present results pertaining to the following question: How is nursing home residents' dignity maintained, promoted...... or deprived from the perspective of family caregivers? In this article, we focus only on indignity in care. This study took place at six different nursing home residences in Sweden, Denmark and Norway. Data collection methods in this part of this study consisted of individual research interviews. Altogether......, the sample consisted of 28 family caregivers of nursing home residents. The empirical material was interpreted using a hermeneutical approach. The overall theme that emerged was as follows: 'A feeling of being abandoned'. The sub-themes are designated as follows: deprived of the feeling of belonging...
These columns summarize the different bilateral and multilateral agreements concluded recently between the different OECD countries and concerning the nuclear energy domain: Argentina - Australia: Agreement concerning Co-operation in the Peaceful Uses of Nuclear Energy (2001). Argentina - Brazil: Joint Declaration regarding the Creation of the Argentinean-Brazilian Agency for Nuclear Energy Applications (2001). Australia - Czech Republic / Australia - Hungary: Agreements on Co-operation in Peaceful Uses of Nuclear Energy and the Transfer of Nuclear Material (2001). Australia - Indonesia: Arrangement Concerning Co-operation on Nuclear Safeguards and Related Matters (2001). Austria - Switzerland: Agreement on the Early Exchange of Information in the Field of Nuclear Safety and Radiation. Brazil - United States: Extension of the Agreement concerning Research and Development in Nuclear Material Control, Accountancy, Verification, Physical Protection, and Advanced Containment and Surveillance Technologies for International Safeguards Applications (2001). Czech Republic - Republic of Korea: Agreement for Co-operation in the Peaceful Uses of Nuclear Energy (2001). European Union- Russian Federation: Agreements on Nuclear Safety and Controlled Nuclear Fusion (2001). France - United States: Agreement for Co-operation in Advanced Nuclear Reactor Science and Technology (2001). Japan - United Kingdom: Co-operation Agreement on Advanced Nuclear Fuel Cycle, Fast Breeder Reactor and Other Related Technologies (2001). Republic OF Korea - United States: Annex IV Joint Project on Cintichem Technology (2000). Morocco - United States: Protocol amending the Co-operation Agreement on the Peaceful Uses of Nuclear Energy (2001). Multilateral Agreements: Agreement for Information Exchange on Radiological Surveillance in Northern Europe (2001). Status of Conventions in the Field of Nuclear Energy. (author)
Full Text Available Patricia A Gibson Epilepsy Information Service, Wake Forest University School of Medicine, Winston-Salem, NC, USA Abstract: Lennox–Gastaut syndrome (LGS has a major impact on the health-related quality of life (HRQL of the affected children as well as their caregivers. The primary caregiver in the family is generally the mother, with support from the father and siblings. The burden of care and the effects of the disease on the child necessitate adjustments in virtually all aspects of the lives of their family. These adjustments inevitably affect the physical, emotional, social, and financial health of the whole family. Numerous sources of support for families can help to ease the burden of care. Improvements in the treatment of LGS, in addition to helping the child with LGS, would likely help improve the HRQL of the family members. This pilot parent survey was designed to explore the impact of epilepsy on caregiver HRQL. Parents of children with epilepsy who had contacted the Epilepsy Information Service at the Wake Forest University School of Medicine, Winston-Salem, NC, USA, were sent questionnaires comprising open- and closed-ended questions. A total of 200 surveys were distributed, with a return rate of 48%. The results revealed that 74% of the parents believed that having a child with epilepsy brought them and their partner closer together. However, when the parents were asked to explain the manner in which epilepsy affected their families, answers included continuous stress, major financial distress, and lack of time to spend with other children. Information and resources for the families of children with LGS could help improve the HRQL of both the patients and their relatives. Keywords: health-related quality of life, HRQL, epilepsy, relatives, siblings
The “graying” of the population is proceeding rapidly, and the prevalence of people living with dementia is rising. Dementia is a syndrome due to the disease of the brain, which is characterized by a progressive, global deterioration in the intellect including memory, learning, orientation, language, comprehension, and judgment. This entails an increased need for assistance with daily tasks. In most cases, family members perform the caregiving role. However, providing care and support for som...
Caro, Camila Caminha; Costa, Jacqueline Denubila; Da Cruz, Daniel Marinho Cezar
The purpose of this study was to identify the level of burden and quality of life of family caregivers of stroke patients and to investigate the correlation between burden, quality of life (including physical, social, psychological, and environmental domains), age of caregivers, and the care period. A descriptive correlational cross-sectional study was performed, with a convenience sample of family caregivers (n = 30) of stroke patients in São Paulo, Brazil. Data were collected using a questionnaire on participants' characteristics, the Zarit Burden Interview Scale (ZBIS), and the World Health Organization Quality of Life-BREF (WHOQOL-BREF) instrument. A descriptive analysis was performed, and correlations between variables were analyzed using Pearson's product-moment correlation coefficient. The average burden score on the ZBIS was 29.6, representing a moderate burden, and the average overall quality of life score on the WHOQOL-BREF was 62.06%, which indicates moderate quality of life. A significant weak negative correlation was observed between burden and environmental domains (r = -0.470; p =.009), quality of life (r = -0.414; p =.023), and physical domains (r = -0.394; p =.031). No significant correlations were found between burden and quality of life, and variables in the psychological and social domains, age of caregivers, or care period. Caregivers for stroke patients presented with moderate levels of burden and reduction in quality of life. Levels of burden correlated negatively with environmental domains, quality of life levels, and physical domains; however, these correlations were weak, indicating the possible interference of other factors.
Full Text Available Abstract Aims The purpose of this study was to examine HRQOL depending on whether the participants have family members with disabilities or not. In addition, we examined the relationship between HRQOL and social networks among family caregivers in Japan. Methods The study has a cross-sectional design. Survey forms were distributed to 9205 people aged 30 and older who visited a dispensing pharmacy within fifteen areas of Japan. We collected data on gender, age, job status, and care giving status for persons with disabilities. Moreover, we assessed support size, social support, and HRQOL. Out of the 2029 questionnaires returned, 1763 (male: 663, female: 1100, mean age = 63.06 ± 13.34 were valid for statistical analyses (the available response rate was 19.15%. Results A significant difference in HRQOL was identified between family caregivers and non-family caregivers. Further, in males (N = 101, the results confirmed that only social support predicted the PCS and MCS scores, while other variables did not predict either score. On the other hand, in females (N = 144, it was found from the second step of hierarchical multiple regression analysis that only age explained the PCS score, while job status and support size explained the MCS score. Conclusion It is reasonable to conclude that the HRQOL of family caregivers was lower than that of non-family caregivers, and that the HRQOL of family caregivers was estimated by their social networks.
Joling, Karlijn J.; Bosmans, Judith E.; van Marwijk, Harm W. J.; van der Horst, Henriëtte E.; Scheltens, Philip; MacNeil Vroomen, Janet L.; van Hout, Hein P. J.
Dementia imposes a heavy burden on health and social care systems as well as on family caregivers who provide a substantial portion of the care. Interventions that effectively support caregivers may prevent or delay patient institutionalization and hence be cost-effective. However, evidence about
Joling, K.J.; Bosmans, J.E.; van Marwijk, H.W.J.; van der Horst, H.E.; Scheltens, P.; Vroomen, J.L.M.; van Hout, H.P.J.
Background: Dementia imposes a heavy burden on health and social care systems as well as on family caregivers who provide a substantial portion of the care. Interventions that effectively support caregivers may prevent or delay patient institutionalization and hence be cost-effective. However,
Full Text Available Advance directives (ADs have been legislated in many countries to protect patient autonomy regarding medical decisions at the end of life. China is facing a serious cancer burden and cancer patients’ quality at the end of life should be a concern. However, limited studies have been conducted locally to gather information about attitudes toward ADs. The purpose of this study was to investigate the attitudes of Chinese cancer patients and family caregivers toward ADs and to explore the predictors that are associated with attitudes. The study indicated that although there was low awareness of ADs, most cancer patients and family caregivers had positive attitudes toward ADs after related information was explained to them. Participants preferred to discuss ADs with medical staff when they were diagnosed with a life-threatening disease. Preferences for refusing life-sustaining treatment and choosing Hospice-Palliative Care (HPC at the end of life would increase the likelihood of agreeing with ADs. This suggests that some effective interventions to help participants better understand end-of-life treatments are helpful in promoting ADs. Moreover, the development of HPC would contribute to Chinese cancer patients and family caregivers agreeing with ADs.
M. A. D. Danucalov
Full Text Available Familial caregivers of patients with Alzheimer's disease exhibit reduced quality of life and increased stress levels. The aim of this study was to investigate the effects of an 8-week yoga and compassion meditation program on the perceived stress, anxiety, depression, and salivary cortisol levels in familial caregivers. A total of 46 volunteers were randomly assigned to participate in a stress-reduction program for a 2-month period (yoga and compassion meditation program—YCMP group (n=25 or an untreated group for the same period of time (control group (n=21. The levels of stress, anxiety, depression, and morning salivary cortisol of the participants were measured before and after intervention. The groups were initially homogeneous; however, after intervention, the groups diverged significantly. The YCMP group exhibited a reduction of the stress (P<0.05, anxiety (P<0.000001, and depression (P<0.00001 levels, as well as a reduction in the concentration of salivary cortisol (P<0.05. Our study suggests that an 8-week yoga and compassion meditation program may offer an effective intervention for reducing perceived stress, anxiety, depression, and salivary cortisol in familial caregivers.
Taylor, Elizabeth Johnston
To measure the prevalence of spiritual needs and identify factors associated with spiritual needs among patients with cancer and family caregivers. Descriptive, cross-sectional, quantitative. Inpatients and outpatients at a university medical center in the southwestern United States. 156 patients with cancer and 68 family caregivers who were primarily white and Christian and mostly perceived their cancer as not life threatening. Self-report questionnaires, including the Spiritual Interests Related to Illness Tool and Information About You. Statistical analysis involved analyses of variance, correlations, and factor analysis. Spiritual needs and desire for nursing help with spiritual needs. The most important spiritual needs included being positive, loving others, finding meaning, and relating to God. The least important were needing to ask "why" questions and preparing for dying. Desire for nursing assistance with spiritual needs was moderate and varied. Variables correlated with spiritual needs and desire for nurse help included religiosity, being an inpatient, and perceiving the cancer as incurable. Desire for nurse help and importance of spiritual needs were directly correlated. Distressing spiritual needs were reported least frequently. Certain factors appear to be associated with how much spiritual need is perceived and how much nurse help with those needs is wanted. Patients with cancer and family caregivers have similar spiritual needs that may require care. Spiritual assessment and therapeutics can target specific types of spiritual needs. A nurse's help with spiritual needs, however, is not always wanted.
Objectives Dementia brings new difficulties in the lives of people with this disorder. It is important that family caregivers accurately recognize these difficulties to help their family members live fulfilling lives. Based on information gathered from people with dementia, family caregivers, and nurses providing medical care to this population, this study compared the differences in perspectives related to the difficulties associated with dementia between the family member with dementia and the family caregiver.Methods The primary participants in this investigation were 106 people with dementia and their family caregivers. Participants with dementia were 65 years and older who were receiving home care in Tokyo. Participants were interviewed about their difficulties while family caregivers completed a questionnaire with basic information regarding people with dementia. Additionally, the nurse providing medical care to the person with dementia completed a questionnaire about the medical care. In this study, difficulties in the lives of people with dementia was defined as impediments in life due to dementia. Difficulties were classified according to 12 symptoms based on responses that appeared frequently in the interviews. The 12 symptoms were pain, hallucinations/delusions, aggressive behavior, memory loss, disorientation, communication impairment, anxiety/confusion, toileting problems, gait disturbance, dietary deficiency, sleep disorder, and social withdrawal. Additional information was gathered and analyzed that included diagnosis and severity of dementia, need for long-term care, core symptoms of dementia, behavioral and psychological symptoms of dementia (BPSD), and delirium.Results The family caregiver's perspective about the difficulties encountered in the life of their family member with dementia was often different from the perspective of the associated family member. No family caregivers recognized that pain was a difficulty, and there were only a
Anngela-Cole, Linda; Busch, Mandee
In this study the authors investigated stress, anticipatory mourning, and cultural practices among family caregivers from independent and interdependent cultural groups. Focus groups were used to collect data from 56 caregivers providing care to family members with terminal cancer, representing four cultural groups in Hawai'i: Chinese, European Americans, Japanese, and Native Hawaiians. Participants from all four cultural groups identified similar stressors and agreed that support groups helped them cope with the stresses and sadness they were experiencing and differed in culturally based motivations for caregiving, perceived roles, and processing of grief. The findings of this study indicated a need for additional conceptual models of the caregiving trajectory and more culturally sensitive strategies, particularly indirect methods, for working with diverse populations of caregivers.
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
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 in health policy. Based on
Day, Carolina Baltar; Bierhals, Carla Cristiane Becker Kottwitz; Santos, Naiana Oliveira Dos; Mocellin, Duane; Predebon, Mariane Lurdes; Dal Pizzol, Fernanda Laís Fengler; Paskulin, Lisiane Manganelli Girardi
Family caregivers of aged stroke survivors face challenging difficulties such as the lack of support and the knowledge and skills to practice home care. These aspects negatively influence the caregivers' burden and quality of life, the use of health services, and hospital readmissions of the stroke survivor. The aim of this research is to describe an educational intervention focused on family caregivers of stroke survivors for the development of home care in the south of Brazil. A randomized clinical trial with 48 family caregivers of stroke survivors will be recruited and divided into two groups: 24 in the intervention group and 24 in the control group. The intervention will consist of the systematic follow-up by nurses who will perform three home visits over a period of 1 month. The control group will not receive the visits and will have the usual care guidelines of the health services. Primary outcomes: burden and quality of life of the caregiver. functional capacity and readmissions of the stroke survivors; the use of health services of the stroke survivors and their family caregivers. Outcomes will be measured 2 months after discharge. The project was approved in April 2016. This research offers information for conducting educational intervention with family caregivers of stroke survivors, presenting knowledge so that nurses can structure and plan the actions aimed at the education of the family caregiver. It is expected that the educational intervention will contribute to reducing caregiver burden and improving their quality of life, as well as avoiding readmissions and inadequate use of health services by stroke survivors. ClinicalTrials.gov, ID: NCT02807012 . Registered on 3 June 2016. Name: Nursing Home Care Intervention Post Stroke (SHARE).
Masoudi, Reza; Abedi, Heidar Ali; Abedi, Parvin; Mohammadianinejad, Seyed Ehsan
The broad spectrum of problems caused by multiple sclerosis (MS) imposes heavy responsibility to caregivers in caring of their patients. Therefore, they encounter many issues and challenges in this situation. The purpose of this study was to explore the experiences and challenges of MS family caregivers. A qualitative design, based on a thematic analysis approach, was used to reach the study aim. Data were collected and analyzed concurrently through in-depth unstructured interviews, field notes, and observations that were held with 23 participants (14 family caregivers and 9 MS patients) at two referral centers in Ahvaz, Iran. THREE MAJOR THEMES WERE EXTRACTED FROM THE ANALYSIS OF THE TRANSCRIPTS: "emotional exhaustion of caregivers," "uncertain atmosphere of caring," and "insularity care." The first theme consisted of three subthemes: "stressful atmosphere of caring," "conflict and animism," and "continuing distress affecting the caregiver." The second theme consisted of three subthemes: "unstable and complicacy of disease," "caring with trial and error," and "frequent hospitalization of patients," and the third theme consisted of two subthemes: "caring gap and disintegration" and "lack of sufficient support." This study will be useful to healthcare system for managing the challenges of MS patients' family caregivers. Improving the conditions and performance of family caregivers is crucial in order to provide high-quality care to people with MS.
Jeong, Ansuk; An, Ji Yeong
There is a consensus that cancer care should go beyond physical care as cancer patients and their family caregivers experience psychological burden, financial difficulty, as well as social relation issues. The current study aimed to investigate the moderating impact of social support on depression and anxiety of cancer patients and their family caregivers. Gastric cancer patients and their family caregivers who visited a university medical center in Seoul were approached for participation in the study. Fifty-two pairs of adult patients and caregivers participated in the study. Along with demographic information and the physical condition of the patients, such as pre-operation cancer stage and the type of gastrectomy, social support, depression, and anxiety were measured for patients and caregivers, respectively. In the first round of analysis, patients' depression was associated with age, while patients' anxiety was related to income. On the other hand, caregivers' depression was not associated with patients' health and living arrangement. In the second round of analysis to examine the moderating effect of social support, patients' income and social support were related to depression and anxiety, but the interaction of income and social support was only observed for anxiety. For caregivers, no interaction effects were found. Social support decreased the negative effects of low income status on the patients. While the income of the families with cancer cannot be adjusted in the short-term, their experience of social support can be managed by a proper support system. Diverse implications in medical settings are discussed.
Xie, Bo; Su, Zhaohui; Liu, Yihao; Wang, Mo; Zhang, Ming
To assess and compare health information wanted and obtained from doctors/nurses by Chinese cancer patients and family caregivers. (1) What are the instrument's psychometrics in Chinese cancer patients and family caregivers? (2) How might Chinese cancer patients and family caregivers differ in the amount of different types of health information they want to have? and (3) How might Chinese cancer patients and family caregivers differ in the amount of different types of information they were able to obtain from doctors/nurses? This was a cross-sectional study using a paper-pen questionnaire. A total of 198 participants (79 cancer patients; 119 family caregivers) from a general hospital in Sichuan, China completed the instrument in March 2014. The instrument has excellent reliability and validity. Participants wanted to have a wide range of health information, including but not limited to information about diagnosis or treatment. Across all types of information, participants obtained from doctors/nurses significantly less than what they wanted. The discrepancy between information wanted and obtained varied across different types of information. The discrepancy was largest for information about complementary and alternative medicine (CAM) and psychosocial aspects and smallest for information about diagnosis and self-care. Patients and caregivers did not differ in the amount of different types of information they wanted or obtained from medical professionals. There is a great need for providing more information to both patients and their families, particularly information about CAM and psychosocial aspects.
Rose, Julia Hannum; Bowman, Karen F.; O'Toole, Elizabeth E.; Abbott, Katherine; Love, Thomas E.; Thomas, Charles; Dawson, Neal V.
Purpose: There is a growing consensus that quality of care for frail elders should include family and be evaluated in terms of patient-centered, family-focused care (PCFFC). Family caregivers are in a unique and sometimes sole position to evaluate such care. In the context of caring for physically frail elders, this study examined the extent to…
Ducharme, Francine C.; Levesque, Louise L.; Lachance, Lise M.; Kergoat, Marie-Jeanne; Legault, Alain J.; Beaudet, Line M.; Zarit, Steven H.
Purpose: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Design and Methods: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a…
Krug, Katja; Miksch, Antje; Peters-Klimm, Frank; Engeser, Peter; Szecsenyi, Joachim
Family caregivers play a key role in palliative care at home, and understanding the interdependencies in the constellation of patient, family caregivers and service providers is important. As few longitudinal studies have examined the influence of patient quality of life (QoL) in palliative care on burden of family caregivers, the aim of this study was to identify correlations between changing patient QoL and changing burden of family caregivers that need consideration in patient management. Palliative patients with cancer in primary care evaluated their QoL (Quality of Life Questionnaire Core 15 Palliative Care, QLQ-C15-PAL). They were assessed monthly for an interval of 6 months or until death of the patient. Family caregivers reported the burden they perceived while supporting the patient (Short form of the Burden Scale for Family Caregivers, BSFC). Longitudinal data were analysed for all patients with at least 3 available assessments, considering the most recent data for participants with more than 3 assessments. Changes in patient QoL were analysed using the Friedman test. In a stepwise regression analysis, influences of change in patient QoL on changing caregiver burden were investigated. One hundred patients (63 men, 37 women; average age: 68 years) were enrolled in the study. The most common primary diagnoses were colon, lung or breast cancer. In 58 cases, assessments were available from both patients and caregivers. Patients reported overall quality of life increasing towards end of life, although reporting that physical functioning deteriorated. Symptoms of pain and fatigue bothered patients most. Caregiver burden was moderate and on average did not change over time. In a stepwise regression model, the difference in emotional functioning and the difference in dyspnoea showed an influence on the development of caregiver burden (explained variance of 19.3%). Patients' dyspnoea, feelings of depression and anxiety impacted on the perceived burden of family
Abu Kamel, Andaleeb
Family members play a major role in providing care for older people and long-term dependent patients, especially in developing countries where there is a lack of specialized nursing homes and specialized home-visiting programs. Family members are rarely provided with sufficient information or training to provide home care for their dependent relatives. There are inadequate home caregiving educational resources directed to Arabic-speaking caregivers, either in written or in audiovisual presentations. The aims of the present study were (i) to present the process of designing a caregiving educational program entitled 'there is a dependent patient in our home', with an intention to be culturally and linguistically appropriate for a specific Arab-speaking population, and (ii) to present the experience of disseminating the program through YouTube, to be accessible for a wide range of caregivers. The program was a product of a process involving seven phases, starting with a review of the literature and ending with disseminating 17 short 'caregiving' videos on YouTube, the most popular video-sharing website. The program presented necessary skills, instructions, and information that enabled caregivers to provide safe and competent daily caring activities for their functionally dependent relative or older adults at home. The program was registered in the Jordan National Library. After 2 months of broadcasting it on YouTube, the number of views exceeded 6800. Many constructive comments were received from caregivers. Language, simplicity, and attractiveness of the program were judged as the areas of satisfaction by the viewers, whereas lack of a few topics such as verbal communication with patients and dealing with daily caregivers' burden and stressors were the main reasons of dissatisfaction. This program was an endeavor to provide the Arabic library with a home caregiving resource. Adequate advertisement of the program would encourage health providers to search for and use
Bronner, Fred; de Hoog, Robert
In the last 20 years changes have taken place which have altered the decision-making process in families—family democracy is clearly in the ascendant. The family has evolved into what business research calls a decision-making unit. This general trend probably also has consequences for holiday
Cabral, Ivone Evangelista; de Moraes, Juliana Rezende Montenegro Medeiros
In Brazil, studies rarely address the social network of a child with special health care needs (CSHCN). the study sought to characterize the social network of the child and analyze the role of the family in its creation. a qualitative approach was developed through five dynamics (Speaking Map) based on the creative sensitive method, with five groups of families (12 participants) in their homes. the critical discourse analysis of the caregivers (grandparents, siblings and neighbors) showed that the mother plays the main role in articulating the social network, with its points being linked by the hospital, primary and rehabilitation care, household, school, etc. Familial care becomes more visible at home and within the community. with the insufficient public policy that articulating healthcare facilities for CSHCN in the community, family members shape a social network characterized by a dense and fluid mesh.
Tokem, Yasemin; Ozcelik, Hanife; Cicik, Atiye
Family caregivers who provide care for cancer patients may have to cope with a variety of physical, social, and economic problems during the caregiving process. A sense of hopelessness seems to lead to increasingly negative evaluations of new situations and less effective coping strategies. The objective of the study was to examine the relationship between hopelessness and the coping strategies of the family caregivers of oncology patients. This cross-sectional, descriptive correlational design study was carried out in the adult oncology unit and outpatient radiation oncology units of a university hospital in Turkey. The research sample was composed of 110 family caregivers. A sociodemographic data form, the Coping Stress Strategies Scale, and the Beck Hopelessness Scale were used in face-to-face interviews. Significant correlations were found between hopelessness and coping strategies. There was a positive correlation between hopelessness and the helpless approaches, which constitute a part of the emotion-focused coping strategies (r = 0.254, P coping strategies (optimistic approach and seeking social support) (r = -0.484, P family caregivers are raised, they may adopt a more optimistic approach, and seek more social support, and display more effective coping strategies. This study could be used to help develop nursing interventions and efficient coping strategies. It suggests how oncology nurses may support family caregivers to increase their level of hope.
Lethin, Connie; Hallberg, Ingalill Rahm; Karlsson, Staffan; Janlöv, Ann-Christin
Family caregivers' experiences of formal care when caring for persons with dementia through the process of the disease is sparsely investigated. To investigate family caregivers' experiences of formal care when caring for a person with dementia, through the stages of the disease. A qualitative approach with focus group interviews. Four focus group interviews were conducted in October 2011 with 23 spouses and adult children of persons with dementia and analysed with content analysis. The participants' experiences of formal care when caring for a person with dementia were captured in the theme 'Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia'. This can be broken down into the categories 'The dementia diagnosis - entry into formal care as a novice family caregiver', 'Needing expanded collaboration with formal care to continue care at home' and 'Being dependent on a nursing home and trying to maintain involvement'. Family caregiving requires collaboration with formal care to get support adjusted to the individual's needs, specific to the stages of dementia. Caregivers experience a transition process with three main turning points: the dementia diagnosis; when they realise increased need for formal care to continue caring at home; and when the person with dementia is moved into a nursing home. The interviewed caregivers experience formal care reactive to their needs and this often promoted unhealthy transitions. Formal care needs to be proactive and deliver available care and support early on in the dementia trajectory. Interventions should focus on facilitating a healthy transition for family caregivers through the trajectory of the dementia disease to ensure their well-being. © 2015 Nordic College of Caring Science.
Miriam Teresa Domínguez - Guedea
Full Text Available Objective: To analyze the relationship of psychological aspects of family caregivers with the support that they offer to the diabetic patient’s adherence to treatment. The psychological aspects were: subjective well-being, attachment styles, coping strategies to problems and perceived social support. Methods: Joined in the study 29 family caregivers in a noneprobabilistic sample. Participants were contacted from three Mutual Aid Groups for diabetic and hypertensive patients in the city of Hermosillo, México. Questionnaires designed for the purposes of research were applied, as well as psychometric instruments previously validated in the cultural reference group. Results: The data showed that the psychological aspects that are statistically significant and negatively related to adherence therapy are avoidant attachment and negative affection, both associated to each other in a positive way, indicating that they occur in parallel. Avoidant attachment was positively associated with avoidant coping strategies and emotional disturbance, but negatively with secure attachment and material satisfaction. Negative affection were positively associated with emotional coping, but negatively with secure attachment and material satisfaction. Negative affect were positively associated with emotional confrontation, but negatively with positive affection, material satisfaction, emotional support and guidance support. Conclusions: More applied research in needed on the influence of family factors in achieving adherence to treatment, because so far, most work focuses more on the individual patient, disregarding the family factor.
Egerod, Ingrid; Andersson, Annette E; Fagerdahl, Ann-Mari
OBJECTIVES: Severe necrotising soft tissue infections (NSTI) are rare life threatening rapidly progressing bacterial infections requiring immediate diagnosis and treatment. The aim of the study was to explore the experience of family caregivers of patients with necrotising soft tissue infection...... during the acute stage of disease. METHODS: Our study had a qualitative descriptive binational design using qualitative content analysis to explore diaries written by close family members (n=15). Participants were recruited from university hospitals in Denmark and Sweden. FINDINGS: Three main categories...... emerged: Trajectory, Treatment, and Patient & Family. The first helped us construct an overview of the NSTI trajectory showing issues of importance to patient and family caregivers. The following categories were analysed further to describe four themes central to the family caregiver experience: craving...
Sung, Minjung; Park, Jiyeon
In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were…
Holm, Maja; Årestedt, Kristofer; Carlander, Ida; Wengström, Yvonne; Öhlen, Joakim; Alvariza, Anette
Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness. The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did. A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score ≤ 0 vs ≥ 1). A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression. Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit. Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.
Chiu, Teresa; Marziali, Elsa; Colantonio, Angela; Carswell, Anne; Gruneir, Marilyn; Tang, Mary; Eysenbach, Gunther
ABSTRACTThe aim of this study was to assess the usability of a new Internet-based Caregiver Support Service (ICSS) and evaluate its effects on health outcomes of Chinese Canadians who cared for a family member with dementia. Demographic and questionnaire data were collected from 28 participants, and in-depth interviews were conducted with 10 participants. Results showed that non-users reported higher levels of burden post-intervetion, and frequent users showed post-intervention reduction in experienced burden. Traditional beliefs shaped caregivers' needs; also, ethno-cultural-linguistic contexts affected system usability and were associated with usage behaviour. This study indicates that caregivers can benefit from receiving professional support via asynchronous e-mails and a dedicated information web site. The ICSS is a feasible approach for supporting caregivers who prefer an alternative service model. This emerging service requires more research in: enhanced technology design, service delivery models for immigrant caregivers, and evaluation of effectiveness and cost-effectiveness.
Kageyama, Masako; Yokoyama, Keiko; Nakamura, Yukako; Kobayashi, Sayaka
A family peer-education program for mental disorders was developed in Japan, similar to existing programs in the United States and Hong Kong. Families that serve as facilitators in such programs may enhance their caregiving processes and, thereby, their well-being. This study's aim was to describe how families' caregiving experiences change, beginning with the onset of a family member's mental illness, through their involvement in a family group or peer-education program as participants then facilitators. Thus, this study was conducted in a family peer-education program for mental disorders in Japan. Group interviews were conducted with 27 facilitators from seven program sites about their experiences before, during, and after becoming facilitators. Interview data were coded and categorized into five stages of caregiving processes: (1) withdrawing and suppressing negative experiences with difficulty and regret; (2) finding comfort through being listened to about negative experiences; (3) supporting participants' sharing as facilitators; (4) understanding and affirming oneself through repeated sharing of experiences; and (5) finding value and social roles in one's experiences. The third, fourth, and fifth stages were experienced by the facilitators. The value that the facilitators placed on their caregiving experiences changed from negative to positive, which participants regarded as helpful and supportive. We conclude that serving as facilitators may improve families' caregiving processes. © 2015 Family Process Institute.
Marco M Blom
Full Text Available The World Health Organization stresses the importance of accessible and (costeffective caregiver support, given the expected increase in the number of people with dementia and the detrimental impact on the mental health of family caregivers.This study assessed the effectiveness of the Internet intervention 'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at baseline, were randomly assigned to two groups. Caregivers in the experimental group (N = 149 were compared to caregivers who received a minimal intervention consisting of e-bulletins (N = 96. Outcomes were symptoms of depression (Center for Epidemiologic Studies Depression Scale: CES-D and anxiety (Hospital Anxiety and Depression Scale: HADS-A. All data were collected via the Internet, and an intention-to-treat analysis was carried out.Almost all caregivers were spouses or children (in-law. They were predominantly female and lived with the care recipient in the same household. Age of the caregivers varied from 26 to 87 years. Level of education varied from primary school to university, with almost half of them holding a bachelor's degree or higher. Regression analyses showed that caregivers in the experimental group showed significantly lower symptoms of depression (p = .034 and anxiety (p = .007 post intervention after adjustment for baseline differences in the primary outcome scores and the functional status of the patients with dementia. Effect sizes were moderate for symptoms of anxiety (.48 and small for depressive symptoms (.26.The Internet course 'Mastery over Dementia' offers an effective treatment for family caregivers of people with dementia reducing symptoms of depression and anxiety. The results of this study justify further development of Internet interventions for family caregivers of people with dementia and suggest that such interventions are promising for keeping support for family caregivers accessible and affordable. The findings are even more
Rosa, Francesca; Bagnasco, Annamaria; Aleo, Giuseppe; Kendall, Sally; Sasso, Loredana
This paper was a report of the synthesis of evidence on examining the origins and definitions of the concept of resilience, investigating its application in chronic illness management and exploring its utility as a means of understanding family caregiving of adults with Chronic Obstructive Pulmonary Disease. Resilience is a concept that is becoming relevant to understanding how individuals and families live with illness, especially long-term conditions. Caregivers of adults with Chronic Obstructive Pulmonary Disease must be able to respond to exacerbations of the condition and may themselves experience cognitive imbalances. Yet, resilience as a way of understanding family caregiving of adults with COPD is little explored. Literature review - integrative review. CINAHL, PubMed, Google Scholar and EBSCO were searched between 1989-2015. The principles of rapid evidence assessment were followed. We identified 376 relevant papers: 20 papers reported the presence of the concept of resilience in family caregivers of chronic diseases patients but only 12 papers reported the presence of the concept of resilience in caregivers of Chronic Obstructive Pulmonary Disease patients and have been included in the synthesis. The term resilience in Chronic Obstructive Pulmonary Disease caregiving is most often understood using a deficit model of health.
Savundranayagam, Marie Y; Orange, J B
Communication problems stemming from Alzheimer's disease (AD) often result in misunderstandings that can be linked with problem behaviours and increased caregiver stress. Moreover, these communication breakdowns also can result either from caregivers' use of ineffective communication strategies, which paradoxically are perceived as helpful, or can occur as a result of not using effective communication strategies that are perceived as unhelpful. The two primary aims were to determine the effectiveness of strategies used to resolve communication breakdowns and to examine whether caregivers' ratings of strategy effectiveness were consistent with evidence from video-recorded conversations and with effective communication strategies documented in the literature. Twenty-eight mealtime conversations were recorded using a sample of 15 dyads consisting of individuals with early, middle and late clinical-stage AD and their family caregivers. Conversations were analysed using the trouble-source repair paradigm to identify the communication strategies used by caregivers to resolve breakdowns. Family caregivers also rated the helpfulness of communication strategies used to resolve breakdowns. Analyses were conducted to assess the overlap or match between the use and appraisals of the helpfulness of communication strategies. Matched and mismatched appraisals of communication strategies varied across stages of AD. Matched appraisals by caregivers of persons with early-stage AD were observed for 68% of 22 communication strategies, whereas caregivers of persons with middle- and late-stage AD had matched appraisals for 45% and 55% of the strategies, respectively. Moreover, caregivers of persons with early-stage AD had matched appraisals over and above making matched appraisals by chance alone, compared with caregivers of persons in middle- and late-stage AD. Mismatches illustrate the need for communication education and training, particularly to establish empirically derived
Sun, Virginia; Raz, Dan J; Ruel, Nora; Chang, Walter; Erhunmwunsee, Loretta; Reckamp, Karen; Tiep, Brian; Ferrell, Betty; McCorkle, Ruth; Kim, Jae Y
The purpose of this study was to evaluate the feasibility and acceptability of a multimedia self-management (MSM) intervention to prepare patients and family caregivers for lung surgery. This is a quasi-experimental, 2-group, sequential enrollment pilot study of a 4-session multimedia intervention (audio/visual + print) to enhance self-management and quality of life (QOL) for patients and family caregivers. The intervention, Preparing for Lung Surgery, begins before surgery, and continues through hospitalization and discharge, with 2 telephone support sessions after discharge. Outcomes were assessed before surgery (preintervention), at discharge, and 2 to 4 weeks postdischarge (postintervention). Patient outcomes were assessed using the Functional Assessment of Cancer Therapy-General (QOL), MD Anderson Symptom Inventory and Functional Assessment of Cancer Therapy-Pulmonary Symptom Index (symptoms), self-efficacy, surgery-related knowledge, and patient activation. Family caregiver outcomes included City of Hope-QOL-Family (QOL), Caregiver Burden Scale, and knowledge. Paired t tests were used for exploratory evaluations of score changes from pre- to postintervention. Sixty participants (38 patients, 22 family caregivers) enrolled in the study (70% accrual). Postintervention scores were significantly improved for patients' emotional QOL (P = .001). Trends for improvements were observed for patient self-efficacy, surgery-related knowledge, and activation. Family caregivers' surgery-related knowledge was significantly improved (P = .02). Overall, participants were highly satisfied with the acceptability/usability of the intervention (3.6-3.7 of 4.0). A standardized MSM intervention was feasible and acceptable in supporting readiness and preparedness for lung surgery and postoperative recovery. A larger randomized trial is needed to verify the impact of the MSM intervention on patient/family caregiver outcomes and health care resource use. Copyright © 2017 Elsevier
Full Text Available Markay Hopps, Laura Iadeluca, Margaret McDonald, Geoffrey T MakinsonPfizer Inc., New York, NY, USA Background: Family caregiving is an increasingly important component of care for patients and the elderly. Objective: The aim of this study is to characterize the burden of family caregiving among employed adults. Methods: Employed adults (≥18 years from the 2013 US National Health and Wellness Survey (NHWS were classified as family caregivers if they reported currently caring for at least one adult relative. Chi-square tests and one-way analyses of variance assessed whether employed caregivers, weighted to the US population, differed from employed non-caregivers on behavioral characteristics, workplace productivity, and health care resource utilization. Results: Eight million workers were family caregivers in the United States, more often female than male (51% vs. 49%, P < 0.05, and 53% were between 40 and 64 years of age. Eighteen percent of caregivers were Hispanic compared with 15% of non-caregivers (P < 0.05. Similar behavioral characteristics between caregivers and non-caregivers included daily alcohol consumption (6% vs. 5% and lack of vigorous exercise (25% vs. 29%, but caregivers had a higher prevalence of smoking (26% vs. 19%, P < 0.05. Caregivers reported a higher mean percentage of work time missed (8% vs. 4%, P < 0.05 and greater productivity impairment (24% vs. 14%, P < 0.05. Some form of depression was reported by 53% of caregivers compared with 32% of non-caregivers (P < 0.05, and more caregivers had self-reported insomnia than non-caregivers (46% vs. 37%, P < 0.05. The number of self-reported diagnosed comorbidities was higher among caregivers compared with that of non-caregivers (5.0 vs. 3.1, P < 0.05, as was the mean number of outpatient visits in the previous 6 months (4.1 vs. 2.7, P < 0.05. Conclusion: Family caregiving is associated with a multidimensional burden that impacts caregivers and has implications for
Laidsaar-Powell, Rebekah; Butow, Phyllis; Charles, Cathy; Gafni, Amiram; Entwistle, Vikki; Epstein, Ronald; Juraskova, Ilona
Family caregivers are regularly involved in cancer consultations and treatment decision-making (DM). Yet there is limited conceptual description of caregiver influence/involvement in DM. To address this, an empirically-grounded conceptual framework of triadic DM (TRIO Framework) and corresponding graphical aid (TRIO Triangle) were developed. Jabareen's model for conceptual framework development informed multiple phases of development/validation, incorporation of empirical research and theory, and iterative revisions by an expert advisory group. Findings coalesced into six empirically-grounded conceptual insights: i) Caregiver influence over a decision is variable amongst different groups; ii) Caregiver influence is variable within the one triad over time; iii) Caregivers are involved in various ways in the wider DM process; iv) DM is not only amongst three, but can occur among wider social networks; v) Many factors may affect the form and extent of caregiver involvement in DM; vi) Caregiver influence over, and involvement in, DM is linked to their everyday involvement in illness care/management. The TRIO Framework/Triangle may serve as a useful guide for future empirical, ethical and/or theoretical work. This Framework can deepen clinicians's and researcher's understanding of the diverse and varying scope of caregiver involvement and influence in DM. Copyright © 2017 Elsevier B.V. All rights reserved.
Background Both Australia and China have a large proportion of people with dementia and the prevalence will triple in Australia and increase five times in China by 2050. The majority of people with dementia are reliant on family caregivers to provide daily care and to maintain the dignity in both countries. As a consequence, caregiver burden has become a major concern because of the negative impact on the care recipients’ and the caregivers’ health. It is strongly recommended that cross-national collaboration should be conducted to share experiences in fighting dementia. The aim of this study was to compare socially and culturally constructed enablers and barriers pertinent to dementia caregivers in one capital city in Australia and one capital city in China through critical reflection on the caregivers’ subjective and objective experiences for the improvement of dementia care services in both countries. Methods Giddens’ Structuration Theory was used as a framework to guide a concurrent mixed methods design with the qualitative strand as a priority. In the qualitative strand, data were collected by focus groups and in-depth interviews while in the quantitative strand, data were collected by questionnaire survey. Results In total 148 caregivers participated in the project with 57 of them from Australia (26 and 31 in the qualitative and quantitative strands respectively) and 91 of them from China (23 and 68 in the qualitative and quantitative strands respectively). Findings from the qualitative and quantitative strands were presented as three categories: A higher objective burden in the Chinese cohort versus a higher subjective burden in the Australian cohort; Unmet need for caregiver support in Australia and China; and Expectations for improving dementia services in Australia and for developing dementia services in China. Conclusions Dementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like
Aline Duarte Folle
Full Text Available Abstract OBJECTIVE To understand the content of Social Representation (SR of family caregivers of Alzheimer's disease patients. METHOD Interviews were conducted with 26 caregivers and analyzed by the ALCESTE software. RESULTS The SR content was structured in two thematic axes called Daily Life and Care and Medical and Emotional Concepts and Outcomes. The first axis creates images related to the routine of interaction with the sick person, and contains a description of care procedures, experiences, and practices applied every day. The second is composed of subjective and conceptual aspects that make up the social representation of Alzheimer's disease, with meanings related to the emotional, medical, and biological contexts. CONCLUSION Due to the importance of topics related to patients' dependence and the personal and emotional consequences of the disease, overload is the main content of the SR of Alzheimer's disease for caregivers, and the understanding of these SR by health professionals should support the planning of interventions addressing this group of individuals.
Jeon, Megan Soohwa; Dhillon, Haryana M; Agar, Meera R
The high incidence and psychophysiological morbidities of sleep disturbance in cancer have been increasingly recognized. Yet, more detailed understanding of sleep disturbance and options for management have been neglected areas in both clinical care and research. Brain tumor patients have been particularly overlooked. A systematic search of the literature from 1990 to 2015 was performed to review sleep disturbance in adults with primary or secondary brain tumor and their family caregivers. Fifty eligible studies were identified, of which 12 focused on sleep, 37 reported sleep items within a health-related quality of life measure and 1 reported caregivers' sleep. No sleep intervention has been developed or tested for brain tumor patients. Sleep disturbance and somnolence were frequently reported as the most severely rated symptoms within health-related quality of life across the disease course or treatments, along with fatigue. However, sleep-focused studies yielded inconsistent results in small samples of mostly benign brain tumors in long-term remission from total tumor resection. The research using standardized, multifaceted sleep assessments, particularly in patients with malignant brain tumor and caregivers who are undergoing treatment, is seriously lacking. A more systematic examination of sleep disturbance is warranted to inform the development of better symptom management programs in this population. © The Author(s) 2017. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org.
Full Text Available Modernity has meant a cultural and social differentiation within the western society, which, according to Jürgen Habermas’ theory on communication, can be seen as a division between different forms of actions that takes place in different realms of the society. By combining Habermas’ notions of lifeworld and system with Arthur Frank’s analysis of stories as a way to experience illness, the article performs a cultural analysis of the meeting between families involved in caregiving in relation to Huntington’s disease and the Swedish welfare system. The ethnographic material shows how caregiving is given meaning through communicative action and illness stories, which are broken up by an instrumental legal discourse employed by the welfare system. This confrontation between communicative and instrumental action breeds alienation towards the state and the welfare system among the affected families. However, the families are able to empower themselves and confront the system through a hybrid form of action, which combines communicative and instrumental action. As such this hybridity, and the space that opens up on the basis of this hybridity, constitutes an important space within the modern society.
Khin Khin Win
Full Text Available BackgroundWith >85 years, the fastest growing age segment in developed countries, dementia in the oldest-old is projected to increase exponentially. Being older, caregivers of dementia in oldest-old (CDOO may experience unique challenges compared with younger-age groups. Thus, we aim to explore demographic characteristics and burden pattern among CDOO.MethodsWe studied 458 family caregiver-patient dyads attending an outpatient memory clinic. We classified patients into three age-groups: <75, 75–84, and ≥85 years. We measured caregiver burden using the Zarit Burden Interview (ZBI 4-factor structure described by Cheah et al. (1. We compared care recipient characteristics, caregiver demographics, and ZBI total/factors scores between the three age-groups, and performed 2-way analysis of variance (ANOVA to ascertain the effect of age-group by disease severity interaction.ResultsOldest-old care recipients were more impaired in cognitive function and instrumental ADL; there was no difference in behavior and basic ADL. Compared with the other two age-groups, CDOO were older (mean age: 50.4 vs 55.5 vs 56.8 years, P < 0.01, and overwhelmingly adult children (85.9% as opposed to spouses (5.3%. CDOO also had higher ZBI total score, role strain, and personal strain (all P < 0.05. However, there was no difference in worry about performance scores. 2-way ANOVA did not reveal significant age-group by disease severity interaction for ZBI total and factor scores, although distinctive differences were seen between role/personal strain with worry about performance in mild cognitive impairment and very mild dementia.ConclusionOur study highlighted that CDOO were mainly older adult children who experienced significant role and personal strain independent of disease severity while caring for their family member with more impaired cognitive and physical function. These results pave the way for targeted interventions to address the unique burden faced
Landeiro, Maria Jos? Lumini; Peres, Helo?sa Helena Ciqueto; Martins, Teresa Vieira
ABSTRACT Objective: to assess the contributions of interactive educational technology "Caring for Dependent People" in the development of knowledge to family caregivers of dependent people in a household context and their satisfaction in its use. Method: quasi-experimental study, not randomized, of the before and after type, with a convenience sample of 65 family caregivers, from two Medicine services of a hospital in Porto, Portugal. The Control Group consisted of 33 family caregivers an...
Duggleby, Wendy D; Swindle, Jennifer; Peacock, Shelley; Ghosh, Sunita
Several research studies have reported the poor quality of life of family caregivers of persons with Alzheimer's disease (AD). However, factors that influence their quality of life have not been clearly defined. The purpose of this study was to examine factors associated with the quality of life of these caregivers such as demographic variables, their transition experience, and hope. A secondary aim was to explore the transition experience of family caregivers of persons with AD. A cross-sectional triangulation data transformation model mixed method design (Quant +Qual) was utilized to address the purpose of the study. Eighty family caregivers of persons with AD completed a survey with quantitative measures [demographic variables, Herth Hope Index (HHI-hope), World Health Organization Quality of Life -BREF (WHOQOL-BREF)] and a qualitative survey about their transitions experience. The qualitative data (transition open ended- survey) was converted to quantitative data using content analysis. Variables significant at the p family caregivers. Moreover, the active engagement of families in seeking information and help, as a way to deal with their transitions, suggests encouraging this engagement is important. The findings of this study also suggest many directions for future research, such as increasing our understanding of the processes of transitions for this population.
Leidy, Nancy Kline; Margolis, Mary Kay; Marcin, James P; Flynn, Jennifer A; Frankel, Lorry R; Johnson, Susan; Langkamp, Diane; Simoes, Eric A F
To quantify the magnitude of child, caregiver, and family distress associated with hospitalization for severe respiratory syncytial virus (RSV) and the posthospitalization recovery period. A prospective study of 46 RSV-hospitalized infants and children family health and functioning (Family Adaptability and Cohesion Evaluation Scale II) were recorded. The mean age of the sample was 10.2 months; 51% of the subjects were male. The average duration of hospital stay for the RSV group was 5.8 +/- 8 days. Most patients received supplemental oxygen (76%) and were monitored for apnea (60%). The mean age of the caregivers (93% mothers) was 29 years. During hospitalization, the RSV-infected patients' health and functional status were significantly poorer than those of control subjects. Caregivers of RSV-infected children reported more stress, greater anxiety, poorer health, and poorer family health and functioning. As long as 60 days after discharge, caregivers of RSV-infected children reported the children's health as significantly poorer and were personally more anxious, compared with control subjects. RSV-related hospitalization creates significant distress for infants and children, caregivers, and families, with some effects extending as long as 60 days after discharge.
Kuo, Li-Min; Huang, Huei-Ling; Hsu, Wen-Chuin; Shyu, Yea-Ing L
Little is known about the differences in patients' behavioral problems and health outcomes of family caregivers of patients with vascular dementia (VaD) and Alzheimer's disease (AD). A secondary analysis of baseline data on a subsample of caregiver-dementia patient dyads in a randomized clinical trial. Family caregivers of VaD patients reported higher self-efficacy than caregivers of AD patients in handling verbally nonaggressive and verbally aggressive behaviors. Caregivers of VaD patients had poorer health-related quality of life (HRQoL) than caregivers of AD patients considering role disability due to physical health problems, bodily pain, social function, and physical component summary. Greater self-efficacy was associated with better mental health-related outcomes for family caregivers of VaD patients, and better self-care ability of VaD patients was associated with better caregiver mental health-related outcomes. Caring for a patient with more severe dementia predicted poor physical health-related outcomes in role disability due to physical health problems, but better overall mental health (mental component summary) for caregivers. This study is the first to examine and compare the behavioral problems of AD and VaD patients in a Chinese population, along with their family caregivers' self-efficacy and health outcomes. Family caregivers of patients with VaD might warrant specific attention to their HRQoL, with interventions developed to enhance their self-efficacy.
Macleod, Ashley; Tatangelo, Gemma; McCabe, Marita; You, Emily
Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia. Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis. Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers' beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an "expert" point of contact, and having beliefs about the caregiving role that enabled the use of services. Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.
Holland, Jason M; Keene, Jennifer R; Kirkendall, Abbie; Luna, Nora
The Family Evaluation of Hospice Care (FEHC) survey is widely employed by hospices, and several studies have examined this information to help inform and enhance end-of-life services. However, these studies have largely focused on examining relatively straightforward associations between variables and have not tested larger models that could reveal more complex effects. The present study aimed to examine the direct and mediating (i.e., via information/education, patient care, and family support) effects of demographic factors, length of stay, timing of referral, patient symptom severity, location of services, and relationship to caregiver on two outcome variables: overall satisfaction and caregiver confidence. Surveys were collected from 3226 participants who had lost a loved one who received hospice services. Structural equation modeling was employed to examine the direct and mediating effects of the independent variables on the two outcomes of interest. Participants reporting on racial minority patients, patients with more symptoms, and those referred too late or too early were the most likely to express some discontentment with hospice services. The information/education these individuals received was the only mediating factor significantly associated with caregiver confidence. More positive perceptions of patient care and information/education were both significantly related to greater overall satisfaction. These findings help to (1) pinpoint those most at risk for being less satisfied with hospice, (2) identify which aspects of care may be most strongly related to overall outcomes, and (3) provide a