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Sample records for family caregiver support

  1. Supporting rural family palliative caregivers.

    Science.gov (United States)

    Robinson, Carole A; Pesut, Barbara; Bottorff, Joan L

    2012-11-01

    There is urgent need to effectively support the well-being of rural palliative family caregivers (FCGs). A mixed method study was conducted with 23 FCGs. Data collection included completion of an assessment questionnaire and semistructured interviews. The most prevalent needs identified by questionnaire were caring for the patient's pain, fatigue, body, and nourishment; FCG's fatigue and need for respite. Yet few FCGs wanted more attention to these needs by healthcare providers. FCGs resisted considering their own personal needs. Instead, they focused on needs related to providing care including to be(come) a palliative caregiver, be skilled and know more, navigate competing wishes, needs, demands, and priorities, and for "an extra pair of hands." Gaps in rural palliative services contributed to low expectations for assistance; reluctance to seek assistance was influenced by FCGs' resourcefulness and independence. Findings suggest that supporting FCGs will most likely be successful when framed in relation to their caregiving role.

  2. Trends Impacting Public Policy Support for Caregiving Families

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    Singer, George H. S.; Biegel, David E.; Ethridge, Brandy L.

    2010-01-01

    Public policy aimed at supporting the caregiving capacity of families has risen to prominence on the public agenda in the United States. Initiatives at the state and federal levels have created some initial services. Three trends that are pushing the issue of family caregiving to the surface are discussed, including large-scale social,…

  3. Family caregivers' support needs after brain injury: a synthesis of perspectives from caregivers, programs, and researchers.

    Science.gov (United States)

    Gan, Caron; Gargaro, Judith; Brandys, Clare; Gerber, Gary; Boschen, Kathryn

    2010-01-01

    There is a dearth of support for family members who assume caregiving responsibilities following acquired brain injury (ABI). This qualitative study broadens the understanding of ABI caregiver support needs through data triangulation from multiple interview sources across different settings. Thirty-nine caregivers across urban and rural settings in Ontario participated in focus groups. Interviews focused on ABI support services received, their utility, access barriers, needed supports, and suggestions for service delivery. Key informant interviews were also held with four US researchers funded through the TBI Model Systems, one Canadian provincial government health official, and representatives from 11 Ontario ABI programs including two brain injury associations. Interviews focused on existing or proposed caregiver programs and gaps in services. A coding framework was developed through content analysis, centring on five themes: coping, supports that worked, supports needed, barriers, and ideal world recommendations. Perspectives from those involved in receiving, providing and researching caregiver interventions following ABI were synthesized to provide a thorough, detailed depiction of the ongoing support needs of caregivers. This convergence of evidence underscores that caregiver support needs transcend geographical boundaries and must be comprehensive, accessible, long-term, and encompass education, emotional, and instrumental support. Recommendations for ABI caregiver support services are offered.

  4. Innovative Program Aims to Improve Support for Cancer Family Caregivers

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    An article about an educational program at the City of Hope Cancer Center intended to provide health professionals with the tools and information needed to help family caregivers care for themselves and their loved ones with cancer.

  5. Traumatic brain injury: unmet support needs of caregivers and families in Florida.

    Science.gov (United States)

    Dillahunt-Aspillaga, Christina; Jorgensen-Smith, Tammy; Ehlke, Sarah; Sosinski, Melanie; Monroe, Douglas; Thor, Jennifer

    2013-01-01

    Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.

  6. Beyond stroke : Description and evaluation of an effective intervention to support family caregivers of stroke patients

    NARCIS (Netherlands)

    Schure, Lidwien M.; van den Heuvel, Elisabeth T. P.; Stewart, Roy E.; Sanderman, Robbert; de Witte, Luc P.; Meyboom-de Jong, Betty

    2006-01-01

    Objective: The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den He

  7. Beyond stroke : Description and evaluation of an effective intervention to support family caregivers of stroke patients

    NARCIS (Netherlands)

    Schure, Lidwien M.; van den Heuvel, Elisabeth T. P.; Stewart, Roy E.; Sanderman, Robbert; de Witte, Luc P.; Meyboom-de Jong, Betty

    Objective: The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den

  8. The benefits of e-health support for older family caregivers in rural areas.

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    Blusi, Madeleine; Dalin, Rolf; Jong, Mats

    2014-03-01

    We conducted a pragmatic, mixed methods study comparing rural family caregivers receiving e-health caregiver support (n = 35) with a control group (n = 21) receiving conventional, non-e-health, caregiver support. After 18 months, the benefits of support were evaluated using the Care Effectiveness Scale (40-items exploring the domains of preparedness, enrichment and predictability). In all domains the e-health group scored significantly higher than the control group. The adjusted difference for overall benefits was 3.0 (P = 0.02) on the scale 0-10. In addition, semi structured interviews were conducted with a sub-sample of the caregivers. For the e-health group flexibility, availability and being able to individualise the support were essential factors. All caregivers in the control group found conventional support to be beneficial, but also stressed unmet needs related to the conventional support being standardised and non-flexible. The study suggests that providers of caregiver support should offer e-health support as an alternative to conventional caregiver support, as it can be more beneficial to family caregivers.

  9. Support groups for dementia caregivers - Predictors for utilisation and expected quality from a family caregiver's point of view: A questionnaire survey PART I*

    Directory of Open Access Journals (Sweden)

    Luttenberger Katharina

    2010-07-01

    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.

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

    Science.gov (United States)

    Giesbrecht, Melissa; Crooks, Valorie A; Williams, Allison; Hankivsky, Olena

    2012-11-01

    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). 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. 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. We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced in health policy. Based on our findings, we demonstrate that re

  11. Traumatic brain injury: unmet support needs of caregivers and families in Florida.

    Directory of Open Access Journals (Sweden)

    Christina Dillahunt-Aspillaga

    Full Text Available Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.

  12. Family Caregiver Alliance

    Science.gov (United States)

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

  13. Stakeholder Perspectives on Policies to Support Family Caregivers of Older Adults with Dementia

    Science.gov (United States)

    Putnam, Michelle; Pickard, Joseph G.; Rodriguez, Carroll; Shear, Erin

    2010-01-01

    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…

  14. An educative support group for female family caregivers: impact on caregivers psychological distress and patient's neuropsychiatry symptoms.

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    Javadpour, Ali; Ahmadzadeh, Laaya; Bahredar, Mohammad Jafar

    2009-05-01

    In developing world most patients with dementia live in the community. And female family caregivers are the primary source to delivering care to patients. Educating and supporting the careers may reduce psychological distress and the challenging behavior as well. We run a non pharmacological intervention focusing on education regarding dementia, behavioral problems and interactive self support group. Twenty nine female family caregivers were assigned and divided in two groups of 15 and 14. Two hours weekly sessions were conducted for 8 weeks. Baseline and outcome measures were assessed using neuropsychiatry Inventory (NPI), general health questionnaire and perceived stress scale (PSS). Initial co relational analysis demonstrated a significant correlation between GHQ and total NPI scores but not for PSS. Paired sample test revealed significant change from baseline and at the end in both GHQ score and neuropsychiatry symptoms. This study supports the use of a non-pharmacologic intervention focusing on education in a feasible and cost benefit setting for dementia caregivers. (c) 2008 John Wiley & Sons, Ltd.

  15. Perception of social support among family caregivers of vegetative patients: A qualitative study.

    Science.gov (United States)

    Noohi, Esmat; Peyrovi, Hamid; Imani Goghary, Zahra; Kazemi, Majid

    2016-04-01

    A vegetative state (VS) is the probable result after brain damage. After VS patients are discharged from the hospital, the responsibility of caring of them is transferred to their families, which impacts a caregiver's physical and psychological health. Social support as a valuable resource reduces the negative effects of stressful events. This study aimed to explore the perception of social support among family caregivers of VS patients. This study is a part of a larger qualitative study which used the descriptive and qualitative method. Purposeful and theoretical sampling was done, and data was gathered through face-to-face, in-depth interviews. The four categories of "Family, a supporter in all aspects," "Beautiful emanation of the nurse's role," "Revitalization via empathy and companionship," and "Defects in support," were extracted. The primary concern of participants was receiving social support which can facilitate caregiving and coping with difficulties, but there are many shortcomings in supporting these caregivers. Copyright © 2016 Elsevier Inc. All rights reserved.

  16. Psychological distress, family functioning, and social support in family caregivers for patients with dementia in the mainland of China

    Institute of Scientific and Technical Information of China (English)

    ZHANG Hong; XIONG Rong-hong; Sara·Hujiken; ZHANG Jun-jian; ZHANG Xiao-qin

    2013-01-01

    Background Dementia is a chronic progressive disease seriously affecting the patient's daily life and working skills and may cause the patient disability and dependence.Thus,caring for dementia patients inevitably falls on families in the mainland of China.Unfortunately,there are rarely enough reports available about mental health and social support in family caregivers for domestic dementia patients.This study aimed to investigate the changes in psychological status and social support in domestic dementia family caregivers and hope the government and relevant departments pay more attention to the family caregiver's psychological change,which may be better for dementia patients.Methods Fifty-eight immediate family caregivers (family group) for dementia patients,including 21 Alzheimer's disease (AD) and 37 vascular dementia inpatients,were recruited for interview.Fifty-eight age-and sex-matched normal volunteers (control group) were also interviewed in the same period.The psychiatric distress was assessed by the Symptom Checklist 90 (SCL-90),family functioning was assessed by the Family Assessment Device (FAD),and the social support was assessed by the Multidimensional Scale of Perceived Social Support (MSPSS).Group differences were analyzed using unpaired t test for comparison of SCL-90,FAD,and MSPSS mean scores.Pearson's correlation coefficient was used to find the association between the various dimensions of FAD and the social support from dementia family caregivers.Results Except phobic anxiety dimension,the other dimensions of SCL-90 mean scores were significantly higher in the family group than those in the control group (P <0.05).In the family group,except affective involvement dimension,the other dimensions of FAD mean scores were within the scope of unhealthy family functioning.Significant differences in problem solving,communication,roles,affective responsiveness,behavioral control,general functioning,and the total MSPSS mean scores were seen between

  17. Stroke family caregivers' support needs change across the care continuum: a qualitative study using the timing it right framework.

    Science.gov (United States)

    Cameron, Jill I; Naglie, Gary; Silver, Frank L; Gignac, Monique A M

    2013-02-01

    Family caregivers provide essential support as stroke survivors' return to community living, but it is not standard clinical practice to prepare or provide ongoing support for their care-giving role. In addition, health care professionals (HCPs) experiences with providing support to caregivers have not been explored previously. The objectives of this qualitative study were to: (1) explore the support needs over time from the perspective of caregivers, (2) explore the support needs over time from the perspective of HCPs, and (3) compare and contrast caregivers' and HCPs' perspectives. A qualitative study with stroke family caregivers (n = 24) and HCPs (n = 14). In-depth interviews were audio taped, transcribed, and analyzed using Framework Analysis. Three main themes emerged concerning: (1) types and intensity of support needed; (2) who provides support and the method of providing support; and (3) primary focus of care. These themes are discussed in relation to the TIR framework. Caregivers' needs for support and the individuals most suited to providing support change across the stroke survivor's recovery trajectory. Changes to service delivery to better support caregivers may include: (1) addressing caregivers' changing needs across the care continuum; (2) implementing a family-centered model of care; and (3) providing 7-day per week inpatient rehabilitation.

  18. Family Caregivers of Adults with Intellectual and Developmental Disabilities: Outcomes Associated with U.S. Services and Supports

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    Williamson, Heather J.; Perkins, Elizabeth A.

    2014-01-01

    Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver…

  19. A method comparison of photovoice and content analysis: research examining challenges and supports of family caregivers.

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    Faucher, Mary Ann; Garner, Shelby L

    2015-11-01

    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.

  20. Family caregivers: Russian-speaking Australian women's access to welfare support.

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    Team, Victoria; Markovic, Milica; Manderson, Lenore

    2007-09-01

    In Australia, rapid population ageing, and government efforts to support people who are chronically ill, elderly or with disabilities to live in their own homes, has led to the primary responsibility of care being undertaken by families. Through its social policies, the Australian government provides income and other types of support to informal caregivers. This article explores how Australian social policy and women's understanding of their roles impact on their access to welfare support. Qualitative research was conducted in Melbourne between February and June 2006. In-depth interviews were undertaken with eight Russian-speaking women involved in caregiving, purposively recruited through ethnic associations, and with four community service providers. Women based their expectations of the gendered and private nature of their role on the social policies in countries of their origin and, hence, did not attempt to access welfare support unless they were referred by health and welfare professionals. In addition, poor referral by professionals, influenced by past societal attitudes that caregiving is a gendered role, contributed to women's limited access to welfare benefits. Changes in the implementation of social policy are proposed to increase caregivers' access to welfare support and efficient utilisation of existing resources.

  1. To use or not to use. A literature review of factors that influence family caregivers' use of support services.

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    Mast, Merle E

    2013-01-01

    Many family caregivers of frail older adults postpone or decline accessible and affordable services such as respite, despite their acknowledgement of unmet needs for support and time away from the burdens and stress of caregiving. How caregivers perceive their need for services, and the factors that influence their decisions to use or not to use services, remain poorly understood. This article reviews the literature on family caregiving and the complex interrelated factors that influence caregivers' choices regarding support services. It organizes these factors into four areas: (a) service characteristics, (b) personal predisposing factors that affect perceived need, (c) experiential coping and decision-making patterns, and (d) relational factors. It also examines the implications of this evidence for nursing assessments and interventions with frail older adults and their family caregivers.

  2. Stress, social support, and psychological distress of family caregivers of the elderly.

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    Baillie, V; Norbeck, J S; Barnes, L E

    1988-01-01

    The effects of stress and social support and their interaction with the psychological well-being of 87 family caregivers of impaired elderly were examined. Perceived stress and satisfaction with support accounted for 32% to 36% of the variance in psychological distress or depression, p less than .001; however, when characteristics of the caregiver situation were included in the models, the effects of perceived stress were found to be spurious. The revised models accounted for 44% to 48% of the variance in psychological distress or depression, p less than .000, and included years of caregiving and mental impairment of the elder instead of perceived stress. Although there were no buffering effects for social support, main effects accounted for 19% to 22% of the variance in psychological distress or depression. The findings indicate that caregivers who are caring for a mentally impaired elder, who have been providing care for an extended time, and who have low social support are at high risk for psychological distress or depression.

  3. Social support network to family caregiver of a patient with Spinal Muscular Atrophy I and II.

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    Rafael Barreto de Mesquita

    2010-06-01

    Full Text Available Objective: To assess the formal and informal support given to the family caregiver of a patient with Spinal Muscular Atrophy I and II. Method: This was a study with a qualitative approach developed in 2008 in the homes of informants and in the premises of the Hospital Infantil Albert Sabin in Fortaleza, Ceara, conducted with 13 mothers, primary caregivers for their ill children. For data collection we used both the interview and the instrument generator of the names and qualifier of the relations, adapted for this study. Quantitative data were processed using the programs UCINET NetDraw 6.123 and 2.38, while the qualitative data were organized based on the technique of the Collective Subject Discourse. The analyses were conducted by means of network maps and collective discourses raised by central ideas. Results: The formal social network of family caregivers was composed of 72 actors, among professionals in the areas of health, education and others, linked to 12 institutions. The informal network was comprised of 83 actors. It was found that the management of care, even when the caregiver has support from other people is a cause of stress and overload. Conclusion: It is evident the importance of applying Social Network Analysis as a tool for understanding structural features and the dynamics of social relations of family caregiver. Of a patient with spinal muscular atrophy. The analysis suggests the need for intervention in thestudy group as a way to contribute to the recognition and use of existing services, increasing the significance of the help provided by network interactions.

  4. Behavioral and Educational Interventions to Support Family Caregivers in End-of-Life Care: A Systematic Review.

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    Chi, Nai-Ching; Demiris, George; Lewis, Frances M; Walker, Amy J; Langer, Shelby L

    2016-11-01

    The demand for family caregivers steadily increases as the number of people receiving hospice and palliative care rises. Family caregivers play a significant role in supporting their loved ones in end-of-life care. However, there is limited evidence about the effectiveness of the interventions for supporting family caregivers. This article synthesizes behavioral and educational interventions that support family caregivers in end-of-life care. A systematic review was conducted and searched interventional studies published between 2004 and 2014 in PubMed, CINAHL, Embase, and The Cochrane Library electronic databases. Fourteen studies were identified and analyzed: 4 educational studies, 6 cognitive behavioral therapy studies, and 4 psychoeducational studies. All educational and behavioral interventions had developed structures and treatment manuals and improved family caregivers' outcomes. The cognitive behavioral therapy resulted in more positive outcomes than the other 2 interventions. More rigorous randomized controlled trials are needed to replicate current effective interventions with larger and diverse sample. Future studies need to develop tools for assessing family caregivers' needs, create consistent and specific tools to effectively measure family caregivers' outcomes, incorporate a cost-effectiveness analysis, and find the most efficient intervention format and method. © The Author(s) 2015.

  5. "The Church of Online Support": Examining the Use of Blogs Among Family Caregivers of Persons With Dementia.

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    Anderson, Joel G; Hundt, Elizabeth; Dean, Morgan; Keim-Malpass, Jessica; Lopez, Ruth Palan

    2016-12-04

    Many individuals, including dementia caregivers, use blogs to share their experiences. These blogs contain rich narratives representing an untapped resource for understanding the psychosocial impact of caring for a person with dementia at the family level. The present study used blogs written by caregivers of persons with dementia to explore how these individuals leveraged this medium as part of the caregiving experience. Blogs written by self-identified informal caregivers of persons with dementia were identified using a systematic search method, and data were analyzed using a qualitative thematic analysis. Four themes emerged from the narratives: social support through communication and engagement, information gathering and seeking, reminiscing and legacy building, and altruism. By understanding the ways in which individuals providing care for persons with dementia use social media as part of the caregiving experience, family nurses can develop interventions and services aimed at improving caregiver burden and quality of life.

  6. The psychological well-being of disability caregivers: examining the roles of family strain, family-to-work conflict, and perceived supervisor support.

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    Li, Andrew; Shaffer, Jonathan; Bagger, Jessica

    2015-01-01

    We draw on the cross-domain model of work-family conflict and conservation of resources theory to examine the relationship between disability caregiving demands and the psychological well-being of employed caregivers. Using a sample of employed disability caregivers from a national survey, we found that the relationship between caregiving demands and family-to-work conflict was stronger when employees experienced high levels of strain from family. Additionally, we found high levels of family to-work conflict were subsequently associated with decreases in life satisfaction and increases in depression, but only when perceived supervisor support was low. Overall, our findings suggest an indirect relationship between caregiving demands and psychological well-being that is mediated by family-to-work conflict and is conditional on family strain and perceived supervisor support. The theoretical and practical implications of these findings are discussed.

  7. Role of technology in supporting quality control and treatment fidelity in a family caregiver clinical trial.

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    Farran, Carol J; Etkin, Caryn D; McCann, Judith J; Paun, Olimpia; Eisenstein, Amy R; Wilbur, Joellen

    2011-11-01

    This article describes how a family caregiver lifestyle physical activity clinical trial uses research technology to enhance quality control and treatment fidelity. This trial uses a range of Internet, Blaise(®) Windows-based software and Echo Server technologies to support quality control issues, such as data collection, data entry, and study management advocated by the clinical trials literature, and to ensure treatment fidelity concerning intervention implementation (i.e., design, training, delivery, receipt, and enactment) as proposed by the National Institutes of Health Behavior Change Consortium. All research staff are trained to use these technologies. Strengths of this technological approach to support quality control and treatment fidelity include the comprehensive plan, involvement of all staff, and ability to maintain accurate and timely data. Limitations include the upfront time and costs for developing and testing these technological methods, and having support staff readily available to address technological issues if they occur.

  8. Family Caregiver Identity: A Literature Review

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    Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael

    2015-01-01

    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…

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

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    Liu, Hsin-Yi; Huang, Lian-Hua

    2016-12-21

    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.

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

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    Sung, Minjung; Park, Jiyeon

    2012-01-01

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

  11. Apoio social na experiência do familiar cuidador Social support in the family caregiver experience

    Directory of Open Access Journals (Sweden)

    Ana Karina Monte Cunha Marques

    2011-01-01

    Full Text Available Estudo qualitativo, do tipo descritivo, objetivando conhecer a experiência de cuidar de pessoas doentes no contexto dos lares, analisando as implicações do apoio social na saúde física e emocional do familiar cuidador. Os dados foram coletados por meio da entrevista semi-estruturada junto a dezoito familiares cuidadores de pessoas com doenças crônicas. A técnica do discurso do sujeito coletivo foi utilizada para a organização dos dados. Constatou-se que todos os informantes eram do sexo feminino, com idade média de cinquenta anos, possuiam até o nível médio de escolaridade, cuidavam ininterruptamente de pessoa doente, predominando as mães com sequela de acidente vascular cerebral. Relatavam comprometimento da sua saúde relacionado ao cuidado realizado: dor na coluna, hipertensão, enxaqueca e depressão. Os discursos coletivos são sugestivos da quebra das redes sociais e da escassez de apoio, levando a pessoa a rejeitar a condição de cuidador. A sobrecarga ficou caracterizada pelo familiar cuidador perceber-se diante de inúmeras situações de enfrentamento, muitas das quais não conseguia administrar.This is a qualitative and descriptive study aiming to know the experience of taking care of sick people in the context of homes, analyzing the implications of the social support in the physical and emotional health of the family caregiver. The data had been collected by means of the semi-structured interview with 18 family caregivers of people with chronic illnesses. The technique of the Collective subject discourse was used for the organization of the data. One evidenced that all the informers were of the feminine sex, with average age of 50 years and medium instructional level. They took care uninterruptedly of sick people predominating the mothers with sequel of stroke. They reported health complications related to the care carried through: back pain, hypertension, migraine and depression. The collective speeches are

  12. Support for Alzheimer's Caregivers: Psychometric Evaluation of Familial and Friend Support Measures

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    Wilks, Scott E.

    2009-01-01

    Objective: Information on the shortened, 20-item version of the Perceived Social Support Scale (S-PSSS) is scarce. The purpose of this study is to evaluate the psychometric properties of the S-PSSS Family (SSfa) and Friends (SSfr) subscales. Method: Because of their common coping method of social support, a cross-sectional sample of Alzheimer's…

  13. Support for Alzheimer's Caregivers: Psychometric Evaluation of Familial and Friend Support Measures

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    Wilks, Scott E.

    2009-01-01

    Objective: Information on the shortened, 20-item version of the Perceived Social Support Scale (S-PSSS) is scarce. The purpose of this study is to evaluate the psychometric properties of the S-PSSS Family (SSfa) and Friends (SSfr) subscales. Method: Because of their common coping method of social support, a cross-sectional sample of Alzheimer's…

  14. To Pay or Not to Pay: Examining Underlying Principles in the Debate on Financial Support for Family Caregivers

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    Keefe, Janice

    2007-01-01

    In many countries one approach to supporting family-and-friend caregivers is direct financial or monetary support. Debates about the benefits and consequences of such policies pervade the literature. Building on the premise that values underlie public policy, the paper examines four policy paradoxes in the literature and uses selected examples…

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

    Directory of Open Access Journals (Sweden)

    Giesbrecht Melissa

    2012-11-01

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

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

    Science.gov (United States)

    2012-01-01

    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

  17. Impact of support group intervention on family system strengths of rural caregivers of stroke patients in India.

    Science.gov (United States)

    Malini, M Hema

    2015-04-01

    The objective of this study is to evaluate the impact of support group intervention on family system strengths of rural caregivers of stroke patients. True experimental pretest and post-test design was adopted for the study. The study was conducted in Kattankulathur Block, a rural area in Kancheepuram district, India. Two hundred forty caregivers of stroke patients were selected by simple random sampling technique. Enrolment in self-help groups and attending meetings were used as the interventional strategy for the purpose of this study. The main outcome of the study was to evaluate the impact of support group intervention on family system strengths of rural caregivers of stroke patients. Following intervention, the mean score and the standard deviation of the experimental group increased to 44.73 and 5.83, respectively, the control group mean score remained at 22.08 and the standard deviation was 3.07 at t = 37.58. P value was 0.001, which is statistically significant at the confidence interval of 39.45%. It was found that there was a significant and positive increase in the family system strengths of caregivers who participated in the self-help group meetings, thereby suggesting that support group intervention programs are an effective nursing strategy that can be employed for improving the overall well-being of the caregivers of stroke patients. © 2014 National Rural Health Alliance Inc.

  18. Testing Self-Efficacy as a Pathway that Supports Self-Care among Family Caregivers in a Psychoeducational Intervention

    Science.gov (United States)

    Savundranayagam, Marie Y.; Brintnall-Peterson, Mary

    2010-01-01

    This study investigated the extent to which a psychoeducational intervention supports family-centered care by influencing health risk and self-care behaviors of caregivers of individuals with Alzheimer's disease (N = 325). Moreover, this study investigated the extent to which changes in self-efficacy explained changes in health risk and self-care…

  19. Necessidades de apoio social em cuidadores de familiares idosos mexicanos Social support needs of mexican elders family caregivers

    Directory of Open Access Journals (Sweden)

    Miriam Teresa Domínguez Guedea

    2009-08-01

    Full Text Available Conforme aumenta a quantidade de idosos, incrementa o número de pessoas que assumem o cuidado de um familiar idoso dependente funcional. As tarefas do cuidado demandam recursos econômicos, tempo, organização familiar e pessoal que geram uma sobrecarga que pode repercutir negativamente no cuidador. Um recurso que pode amenizar esses impactos é a existência de redes de apoio social, dentro das quais os familiares encontrem ajuda para satisfazer suas necessidades em situações cotidianas e de crise. O objetivo do estudo foi identificar as necessidades de apoio social experimentadas por cuidadores de familiares idosos com problemas de saúde. Análises de conteúdo revelaram as seguintes categorias temáticas: Necessidades emocionais pessoais e interpessoais, Necessidades de apoio econômico, Necessidades de apoio prático-instrumental, Necessidades de orientação e Percepção de recursos para responder às demandas do cuidado. Os resultados são discutidos à luz de outros estudos qualitativos sobre necessidades de cuidadores de idosos.With the increase of elders, increases the number of family members that take care of functional dependent elders. the duties of caregivers demand economic resources, time, personal and familiar organization that generate a burden that can negatively impact the caregiver. One resource that can withhold this impact is the social support network, where the family members can find help to satisfy their daily needs and crises. The objective of this study was to identify social support needs experienced by family caregivers of functional dependent elders. the content analysis revealed the following thematic categories: Emotional personal and interpersonal support needs, Economic support needs, Practical-instrumental support needs, Orientation support needs and Perception of resources to respond to the caregiver's activities demands. the results were discussed compared to other qualitative studies about the needs

  20. Caregiver Burden in Fragile X Families.

    Science.gov (United States)

    Iosif, Ana-Maria; Sciolla, Andres F; Brahmbhatt, Khyati; Seritan, Andreea L

    2013-02-01

    Complex caregiving issues occur in multigenerational families carrying the fragile X mutation and premutation. The same family members may care for children or siblings with fragile X syndrome (FXS) and for elderly parents with fragile X-associated tremor/ataxia syndrome (FXTAS). Family caregivers experience anxiety, depression, neglect of personal health care needs, employment difficulties, and loss of social support, leading to isolation and further psychiatric consequences. There is growing awareness of caregiver burden with regard to parents of children with FXS, but much less is known about the needs of informal caregivers of patients with FXTAS. In this paper, we review the available literature to date and provide suggestions for further exploration of caregivers' needs. Evidence-based strategies to address these needs are included. Many more research studies exploring caregiver burden in multigenerational fragile X families are needed, as well as studies aimed at investigating interventions and their impact on reduction.

  1. A Bright Side to the Work-Family Interface: Husbands' Support as a Resource in Double-and-Triple-Duty Caregiving Wives' Work Lives.

    Science.gov (United States)

    DePasquale, Nicole; Polenick, Courtney A; Davis, Kelly D; Berkman, Lisa F; Cabot, Thomas D

    2017-06-16

    This study examined how women who combine long-term care employment with unpaid, informal caregiving roles for children (double-duty-child caregivers), older adults (double-duty-elder caregivers), and both children and older adults (triple-duty caregivers) differed from their workplace-only caregiving counterparts on workplace factors related to job retention (i.e., job satisfaction and turnover intentions) and performance (i.e., perceived obligation to work while sick and emotional exhaustion). The moderating effects of perceived spouse support were also examined. Regression analyses were conducted on survey data from 546 married, heterosexual women employed in U.S.-based nursing homes. Compared to workplace-only caregivers, double-duty-elder and triple-duty caregivers reported more emotional exhaustion. Double-duty-child caregivers reported lower turnover intentions and both double-and-triple-duty caregivers felt less obligated to work while sick when perceiving greater support from husbands. Results indicate that double-and-triple-duty caregiving women's job retention and obligation to work while sick may depend on perceived spouse support, highlighting the important role husbands play in their wives' professional lives. Findings also lend support to the emerging literature on marriage-to-work positive spillover, and suggest that long-term care organizations should target marital relationships in family-friendly initiatives to retain and engage double-and-triple-duty caregiving employees.

  2. The Effect of Participation in Support Groups on Depression, Anxiety and Stress in Family Caregivers of People with Alzheimers: Randomized clinical trial

    Directory of Open Access Journals (Sweden)

    Fahimeh Taati

    2016-07-01

    Full Text Available This study sought to determine the effect of participation in support groups on the depression, anxiety and stress level of caregivers of patients with Alzheimer. This study was a single blind randomized clinical controlled trial (RCT with 80 family caregivers of people with Alzheimer’s (per group=40. The intervention group participated in eight sessions 1.5- 2 hours in support groups. The tool used in this study was the DASS-21 questionnaire for measuring depression, anxiety and stress level of the caregivers, analysis of parametric data, using SPSS version 21. Findings showed, participation in support groups showed no significant difference on depression, anxiety and stress in family caregivers of Alzheimer patients in the control group and the intervention group. Given that caring for these patients by their family members are very sensitive and costly issues for policy makers and health service providers, community and families of these patients.

  3. Psychological well-being of parents and family caregivers of children with hearing impairment in south India: influence of behavioural problems in children and social support.

    Science.gov (United States)

    van Driessche, Anne; Jotheeswaran, A T; Murthy, G V S; Pilot, Eva; Sagar, Jayanthi; Pant, Hira; Singh, Vivek; Dpk, Babu

    2014-08-01

    Parents of children with hearing impairment are at increased risk of mental health morbidities. We examined the predictive factors associated with caregiver's strain and psychological morbidities in parents and family caregivers of children with hearing impairment. In total, n = 201 parents and family caregivers of children with and without hearing impairment aged 3 to 16 years were recruited. Caregiver's strain and psychological morbidities were measured using the Zarit Burden scale and the World Health Organization's Self-Reporting Questionnaire (SRQ-20). Presence of behavioural problems in children was measured using the Strengths and Difficulties Questionnaire. After adjustment, low educational attainment and domestic violence were found to be associated with caregiving strain, whereas dissatisfaction with social support from family, behavioural problems in children, and domestic violence strongly predicted psychological morbidities. Addressing the mental healthcare needs of parents may help in downsizing the impact of psychological morbidities on the well-being of children with hearing impairment.

  4. Family Caregivers for Cancer Patients in Thailand

    Directory of Open Access Journals (Sweden)

    Warunee Meecharoen

    2013-08-01

    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.

  5. A Randomized Controlled Trial of Clinician-Supported Problem-Solving Bibliotherapy for Family Caregivers of People With First-Episode Psychosis.

    Science.gov (United States)

    Chien, Wai Tong; Thompson, David R; Lubman, Dan I; McCann, Terence V

    2016-11-01

    Family interventions for first-episode psychosis (FEP) are an integral component of treatment, with positive effects mainly on patients' mental state and relapse rate. However, comparatively little attention has been paid to the effects of family interventions on caregivers' stress coping and well-being, especially in non-Western countries. We aimed to test the effects of a 5-month clinician-supported problem-solving bibliotherapy (CSPSB) for Chinese family caregivers of people with FEP in improving family burden and carers' problem-solving and caregiving experience, and in reducing psychotic symptoms and duration of re-hospitalizations, compared with those only received usual outpatient family support (UOFS). A randomized controlled trial was conducted across 2 early psychosis clinics in Hong Kong, where there might be inadequate usual family support services for FEP patients. A total of 116 caregivers were randomly selected, and after baseline measurement, randomly assigned to the CSPSB or UOFS. They were also assessed at 1-week and 6- and 12-month post-intervention. Intention-to-treat analyses were applied and indicated that the CSPSB group reported significantly greater improvements in family burden and caregiving experience, and reductions in severity of psychotic symptoms and duration of re-hospitalizations, than the UOFS group at 6- and 12-month follow-up. CSPSB produces moderate long-term benefits to caregivers and FEP patients, and is a low-cost adjunct to UOFS. © The Author 2016. Published by Oxford University Press on behalf of the Maryland Psychiatric Research Center.

  6. Family caregiving for adults with schizophrenia and diabetes mellitus.

    Science.gov (United States)

    El-Mallakh, Peggy; Yates, Brittany Evans; Adkins, Sarah

    2013-08-01

    Diabetes mellitus (DM) is common among those with schizophrenia, but little is known about family members' roles in the care of relatives who have both schizophrenia and DM. The purpose of this descriptive correlational study was to examine DM knowledge and caregiver burden among 27 family caregivers of people with schizophrenia and DM. Findings indicate that DM knowledge was low. Objective caregiver burden was highest for providing assistance with daily living activities. Subjective burden was highest for preventing the care recipient from keeping people awake at night and dealing with the care recipient's non-adherence to DM care. Family caregivers are in need of education and support in the caregiving role.

  7. Caregiver Support Groups: Factors Affecting Use of Services.

    Science.gov (United States)

    Monahan, Deborah J.; And Others

    1992-01-01

    Examined effects of factors on support group attendance among family caregivers to frail elderly relatives. Found that attendance by primary caregivers was greater for those who were older, who had secondary informal caregiver involved in providing care, or who had significant health problems. Attendance was greater for those caring for…

  8. Widening the Generational Circle: Family Caregivers.

    Science.gov (United States)

    Smith, Bert Kruger

    This document addresses the dilemma faced by families with an aging or disabled member and the stress associated with the role of family caregiver. Emotions experienced by family caregivers, especially when the caregiver is an adult child caring for an elderly or frail parent, are discussed and feelings of desertion, dependence, and sibling…

  9. [The meaning of caregiving experience lived by Lebanese family caregivers of stroke survivors at home].

    Science.gov (United States)

    Taha, Samy; Kazan, Rima Sassine

    2015-03-01

    Introduction six million of deaths are due today to stroke, while stroke survivors will depend on their caregivers at home. As the literature noted in, these caregivers meet challenges and satisfactions, encouraging them to resort to adaptation strategies in order to cope with their care situation. The purpose of this article is to describe and understand the experience of Lebanese family caregivers who take care at home of a relative stroke survivor. Using the phenomenological approach of Giorgi (1997), twelve interviews were conducted with six family caregivers who have been recruited through a rehabilitation center in Beirut. Eight themes have emerged from the phenomenological analysis: the family caregiver burden, the missing social support, the learning through his experience of a family caregiver, the contribution to caregiving survivor, the selflessness in the caregiving, the gratitude in the caregiving, the familiarization with new routines and reconciliation with new lifestyle. The proposed essence from this phenomenological analysis is: the satisfaction in taking care of the stoke survivor by facing challenges and bringing order into the chaos caused by the stroke. The knowledge gained from this study would allow nurses to identify family caregivers at risk in order to help them to adapt to their new role as caregivers, and to develop health promotion strategies, taking into consideration their experience.

  10. Cancer Communication and Family Caregiver Quality of Life

    Directory of Open Access Journals (Sweden)

    Elaine Wittenberg

    2017-03-01

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

  11. Cancer Communication and Family Caregiver Quality of Life

    Science.gov (United States)

    Wittenberg, Elaine; Borneman, Tami; Koczywas, Marianna; Del Ferraro, Catherine; Ferrell, Betty

    2017-01-01

    Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH) Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care. PMID:28257110

  12. How Do Family Caregivers Describe Their Needs for Professional Help?

    Science.gov (United States)

    Yedidia, Michael J.; Tiedemann, Amy

    2008-01-01

    How aligned are the needs of family caregivers with the professional supports available to them? This article presents the results of the first phase of a study, in which four focus group interviews were conducted with a total of 40 family caregivers to elicit their views of the kinds of assistance they expect from nurses and social workers. The…

  13. Informal and Formal Social Support and Caregiver Burden: The AGES Caregiver Survey

    OpenAIRE

    Koichiro Shiba

    2016-01-01

    Background: We examined the associations of informal (eg, family members and friends) and formal (eg, physician and visiting nurses) social support with caregiver’s burden in long-term care and the relationship between the number of available sources of social support and caregiver burden. Methods: We conducted a mail-in survey in 2003 and used data of 2998 main caregivers of frail older adults in Aichi, Japan. We used a validated scale to assess caregiver burden. Results: Mult...

  14. Family needs and TBI caregiver mental health in Guadalajara, Mexico.

    Science.gov (United States)

    Leibach, Gillian G; Trapp, Stephen K; Perrin, Paul B; Everhart, Robin S; Cabrera, Teresita Villaseñor; Jimenez-Maldonado, Miriam; Arango-Lasprilla, Juan Carlos

    2014-01-01

    Traumatic brain injury (TBI) is a leading cause of death in Mexico, and Mexican TBI caregivers have been shown to experience significant mental health problems and high levels of family needs. This study investigated the associations between family needs and Mexican TBI caregiver mental health. Ninety TBI caregivers from Guadalajara, Mexico completed measures assessing their own mental health (depression, anxiety, burden, satisfaction with life, and self-esteem) and family needs (physical health, informational, financial, social support, and household). Family health needs were uniquely associated with all indices of caregiver mental health, and household needs were uniquely associated with caregiver depression, burden, and anxiety. Additionally, social support needs were related to caregiver satisfaction with life, informational needs to burden, and financial needs to self-esteem. Interventions for TBI caregivers in Mexico-and likely in other global regions with high levels of familism-should include an emphasis on overall family health, the delineation of family roles regarding household responsibilities, the improvement of social support networks and the social presence of family members, and the provision of complete and relevant information regarding TBI. When these needs are more comprehensively met, caregiver mental health will likely improve.

  15. Social support, caregiving, and aging.

    Science.gov (United States)

    Chappell, Neena L; Funk, Laura M

    2011-09-01

    This article reviews the international English-language literature on social support and caregiving in gerontology since the early 1990s. The literature has grown, but consensus on the terms' meaning and measurement is lacking. Interest is ongoing in practical help, in benefits of social support, and in demands and negative outcomes for caregivers, with growing but less emphasis on more theoretical questions, on negative outcomes from the receipt of support, and on positive consequences of providing care. Nevertheless, social support is duly recognized as a social determinant of health and receiving attention at policy levels - both are significant shifts from two decades ago and add to the interest this area will receive from researchers in coming decades. There remain many unanswered questions regarding the changing societal context, but it is clear that the social support of others - throughout our lives including old age - will continue in the future, albeit in ever-changing forms.

  16. Family Relationships and Psychosocial Dysfunction Among Family Caregivers of Patients With Advanced Cancer.

    Science.gov (United States)

    Nissen, Kathrine G; Trevino, Kelly; Lange, Theis; Prigerson, Holly G

    2016-12-01

    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. To investigate family types identified by a cluster analysis and to examine the reproducibility of cluster analyses. We also sought to examine the relationship between family types and caregivers' psychosocial function. Data from 622 caregivers of advanced cancer patients (part of the Coping with Cancer 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 Support Evaluation List), and perceived caregiver burden (Caregiving Burden Scale). Three family types emerged: low-expressive, detached, and supportive. Analyses of variance with post hoc comparisons showed that caregivers of detached and low-expressive family types experienced lower levels of quality of life and perceived social support in comparison to supportive family types. 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 with the worst. These findings indicate that family function is related to psychosocial function of caregivers of advanced cancer patients. Therefore, paying attention to family support and family members' ability to share feelings and manage conflicts may serve as an important tool to improve psychosocial function in families affected by cancer. Copyright © 2016 American Academy of Hospice and Palliative Medicine. All rights reserved.

  17. Needs of family caregivers in home care for older adults

    Directory of Open Access Journals (Sweden)

    Carla Cristiane Becker Kottwitz Bierhals

    Full Text Available ABSTRACT Objective: 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. Methods: 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. Results: 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. Conclusion: understanding caregivers' needs allows nurses to plan interventions based on their particularities.

  18. The Caregiving Experience in a Racially Diverse Sample of Cancer Family Caregivers

    Science.gov (United States)

    Siefert, Mary Lou; Williams, Anna-leila; Dowd, Michael F.; Chappel-Aiken, Lolita; McCorkle, Ruth

    2009-01-01

    The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by cancer family caregivers. Missing among the predictor variables are the differences by or influence of race/ethnicity. The purpose of this study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics, and determine if any of the patient and family characteristics, including race/ethnicity, predicted outcomes. Cross-sectional surveys were used to determine sociodemographics, psychological and physical health, and burdens of caregiving among 54 caregivers. The analysis consisted of descriptive methods, including frequencies and t tests, and regression modeling. The sample was 35% African American or Hispanic. African American and Hispanic caregivers were younger than white caregivers and more often women, were rarely the spouse of the patient, and frequently had other dependents, including children and older parents. African American and Hispanic caregivers reported lower incomes and more burden related to finances and employment than did white caregivers. When controlling for sociodemographic factors, there was no difference by race/ethnicity on the outcome measures. The experience of caregiving may supersede race/ethnicity and may be its own cultural entity. Areas of concern include the interrelationship between socioeconomic status and race/ethnicity, the absence of cultural frameworks to direct caregiver research, and the question of cultural relevance of measurement tools. PMID:18772665

  19. Family caregivers' experiences in nursing homes

    DEFF Research Database (Denmark)

    Lohne, Vibeke; Høy, Bente; Wilhelm Rehnsfeldt, Arne

    2014-01-01

    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 e...

  20. Family caregivers of individuals with frontotemporal dementia: examining the relationship between coping and caregiver physical and mental health.

    Science.gov (United States)

    Wong, Cindy C; Wallhagen, Margaret I

    2014-01-01

    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 caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (β = 0.46, p caregiver mental health and explained approximately 14% of its variance. These findings support the potential value of emotion-focused coping strategies when dealing with behavioral symptoms manifested by individuals with FTD.

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

    Science.gov (United States)

    Henriksson, Anette; Årestedt, Kristofer

    2013-07-01

    Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. This was a correlational study using a cross-sectional design. The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

  2. Family caregivers and limitations in social activities.

    Science.gov (United States)

    Miller, B; Montgomery, A

    1990-03-01

    Constriction of social and personal activities is one of the most frequently noted consequences of caring for a frail elder. This study analyzed the correlates of perceived limitations in social activities using data from a national sample of the frail elderly and their caregivers. Two research issues were addressed: 1) What differences in demographic, family, and caregiving attributes are associated with variation in perceived restricted social activities? and, 2) How does the process influencing restriction of social activities vary by family relationship of the caregiver? Higher levels of elder dependency and task demands were characteristic of those who reported social limitations, and daughters and wives were more likely to report such limitations than sons and husbands. Subjective assessment of time and task demands, however, were more important influences than objective caregiving activities for all family caregivers.

  3. Family caregivers' experiences in nursing homes

    DEFF Research Database (Denmark)

    Lohne, Vibeke; Høy, Bente; Wilhelm Rehnsfeldt, Arne

    2014-01-01

    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....

  4. Putting Evidence into Practice: nursing assessment and interventions to reduce family caregiver strain and burden.

    Science.gov (United States)

    Honea, Norissa J; Brintnall, Ruthann; Given, Barbara; Sherwood, Paula; Colao, Deirdre B; Somers, Susan C; Northouse, Laurel L

    2008-06-01

    Family caregiving often is associated with multiple rewards, yet the diversity and intensity of caregiving roles also can result in caregiver strain and burden. Using interventions to reduce the strain and burden on caregivers of patients with cancer is an important role nurses play. This article is a critical review and synthesis of the evidence regarding assessment tools and interventions aimed at reducing caregiver strain and burden in the oncology population. Although the striking finding is the limited number of interventions targeted toward oncology caregivers, suggestions from the literature are offered to support and promote healthy outcomes for family caregivers.

  5. Burden in family caregivers of the elderly: prevalence and association with characteristics of the elderly and the caregivers

    Directory of Open Access Journals (Sweden)

    Lara de Sa Neves Loureiro

    2013-10-01

    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.

  6. Family Caregivers and Consumer Health Information Technology.

    Science.gov (United States)

    Wolff, Jennifer L; Darer, Jonathan D; Larsen, Kevin L

    2016-01-01

    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.

  7. Informal and Formal Social Support and Caregiver Burden: The AGES Caregiver Survey

    Directory of Open Access Journals (Sweden)

    Koichiro Shiba

    2016-12-01

    Full Text Available Background: We examined the associations of informal (eg, family members and friends and formal (eg, physician and visiting nurses social support with caregiver’s burden in long-term care and the relationship between the number of available sources of social support and caregiver burden. Methods: We conducted a mail-in survey in 2003 and used data of 2998 main caregivers of frail older adults in Aichi, Japan. We used a validated scale to assess caregiver burden. Results: Multiple linear regression demonstrated that, after controlling for caregivers’ sociodemographic and other characteristics, informal social support was significantly associated with lower caregiver burden (β = −1.59, P < 0.0001, while formal support was not (β = −0.30, P = 0.39. Evaluating the associations by specific sources of social support, informal social supports from the caregiver’s family living together (β = −0.71, P < 0.0001 and from relatives (β = −0.61, P = 0.001 were associated with lower caregiver burden, whereas formal social support was associated with lower caregiver burden only if it was from family physicians (β = −0.56, P = 0.001. Compared to caregivers without informal support, those who had one support (β = −1.62, P < 0.0001 and two or more supports (β = −1.55, P < 0.0001 had significantly lower burden. This association was not observed for formal support. Conclusions: Social support from intimate social relationships may positively affect caregivers’ psychological wellbeing independent of the receipt of formal social support, resulting in less burden.

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

    Science.gov (United States)

    Holroyd-Leduc, Jayna M; McMillan, Jacqueline; Jette, Nathalie; Brémault-Phillips, Suzette C; Duggleby, Wendy; Hanson, Heather M; Parmar, Jasneet

    2017-03-01

    Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

  9. Differences in Outcomes of Caregiver Support Services for Male and Female Caregivers

    Directory of Open Access Journals (Sweden)

    Ya-Mei Chen

    2014-08-01

    Full Text Available The objective of this study is to determine whether different types of caregiver support services are associated with different outcomes for male and female caregivers. Information was obtained on 148 caregivers’ use of three types of support services provided by government-contracted agencies: counseling and education services, respite and supplemental services, and financial services. Five caregiver outcomes were included. Use of counseling and education services and financial services was associated with better caregiver outcomes in female caregivers, but not male caregivers. Among caregivers using respite and supplemental types of services, male caregivers showed better outcomes than did female caregivers. Female caregivers who used respite and supplemental services showed worse outcomes in caregiver mastery and caregiver satisfaction than those who did not use the services. Male and female caregivers responded differently to the caregiver support service. Providing female caregivers with counseling services along with respite services may result in added benefits for female caregivers.

  10. Perceptions of familial caregivers of elder adults.

    Science.gov (United States)

    Sayles-Cross, S

    1993-01-01

    This study investigated perceptions of 139 familial caregivers of elder adults to answer the question "Is there a significant relationship between appraisal, social distance and the cost of caring for an elder family member?" The cost of caring was analyzed in five dimensions (personal-social restrictions, physical-emotional health, value, care recipient as provocateur and economic cost). Caregivers reported concern for their well-being, feelings of disgust/anger, high social distance and coping by accepting and holding back. Not only were significant relationships found, but caregivers emerged as an at-risk population.

  11. Caring for bereaved family caregivers: analyzing the context of care.

    Science.gov (United States)

    Holtslander, Lorraine F

    2008-06-01

    Deaths from cancer will continue to rise with an increasing and aging population. Family caregivers of patients with cancer will face loss, grief, and bereavement as a result. As mandated by cancer and palliative care clinical practice guidelines, support for family caregivers continues through the processes of grief and bereavement to facilitate a positive transition through loss. To provide evidence-based nursing with this population, an analysis of their context of care was undertaken. Key health policies, characteristics of the healthcare delivery system, and the results of research with bereaved palliative caregivers are described. A model of effectiveness, efficiency, and equity is used to examine the situation of bereaved caregivers and to suggest research questions to fill the gaps in what is known about their needs and experience. Bereaved caregivers are at high risk for many distressing symptoms, including depression and sleeplessness, related to a range of complex variables, such as age, gender, social support, resources, and their experiences during caregiving. Current systems of support have not been adequate to meet the needs of this population and very little is known about the caregivers' quality of life, well-being, and health outcomes or how best to provide compassionate and effective nursing care.

  12. [Evaluation of gender differences of family caregivers with reference to the mode of caregiving at home and caregiver distress in Japan].

    Science.gov (United States)

    Sugiura, Keiko; Ito, Mikiko; Mikami, Hiroshi

    2004-04-01

    Male caregivers are growing in number, as the frequency of spouse caregiving rapidly increases. This study aimed to examine gender differences in family caregivers with reference to the mode of caregiving and caregiver distress in Japan. It was designed to clarify the characteristics of both female and male caregivers. The subjects were 2,020 users of public Long-term Care Insurance, randomly stratified and sampled in Higashi-osaka city, Osaka prefecture. Data were collected through mailed, anonymous self-report questionnaires. 1,287 (63.7%) surveys were collected and data from 868 caregivers and care recipients were analyzed, after excluding incomplete cases from 947 participants who were family caregivers. We compared males and females for the level of nursing needs, cognitive disorders of their care recipients, the types and amounts of care provided, the levels of their burdens and the depression associated with providing care, the availability of informal support, the frequency of usage of Long-term care insurance services, and the types of stress coping strategies. Of the total, 27.1% of the caregivers were male. Their age was higher than that of females, but the age of care recipients of female caregivers was significantly higher than that of care recipients of males. There were no significant gender differences in the level of nursing needs of recipients. However, cognitive disorders of care recipients of female caregivers were more severe. Female caregivers spent more time providing care, and performed a greater number of care activities. In particular, female caregivers assisted their care recipients in taking medications, dressing, bathing, eating, meal preparation, shopping, laundry, and money management more often to a significant degree. Furthermore, the average scores for burden and depression were higher in female than in male caregivers. Concerning the usage of Long-term care insurance services, males used a Home-helper service more often. Female

  13. Gender differences in caregiving among family - caregivers of people with mental illnesses

    Science.gov (United States)

    Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep

    2016-01-01

    All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly

  14. Trajectories of fatigue in family caregivers of patients undergoing radiation therapy for prostate cancer.

    Science.gov (United States)

    Fletcher, Barbara A Swore; Schumacher, Karen L; Dodd, Marylin; Paul, Steven M; Cooper, Bruce A; Lee, Kathryn; West, Claudia; Aouizerat, Bradley E; Swift, Patrick S; Wara, William; Miaskowski, Christine

    2009-04-01

    Predictors of and trajectories for evening and morning fatigue were evaluated in family caregivers of oncology patients using hierarchical linear modeling. Evening fatigue trajectory fit a quadratic model. Predictors included baseline sleep disturbances in family caregivers and baseline evening fatigue in patients. Morning fatigue trajectory fit a linear model. Predictors were baseline trait anxiety, levels of perceived family support, and baseline morning fatigue in patients. Findings suggest considerable inter-individual variability in the trajectories of evening and morning fatigue. Evaluating family caregivers for sleep disturbance, anxiety, and poor family support, as well as high levels of patient fatigue, could identify those family caregivers at highest risk for sustained fatigue trajectories.

  15. Family Caregivers in Cancer (PDQ®)—Patient Version

    Science.gov (United States)

    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.

  16. Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research.

    Science.gov (United States)

    Douglas, Sara L; Mazanec, Polly; Lipson, Amy; Leuchtag, Mary

    2016-04-10

    Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient's condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members' well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.

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

    Science.gov (United States)

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

    2017-02-01

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

  18. Family Caregivers' Perspectives on Institutionalization Decisions.

    Science.gov (United States)

    Townsend, Aloen L.

    Family caregivers may face ethical dilemmas when deciding whether a parent or spouse should enter a nursing home. There is considerable evidence that decisions about institutionalization are usually stressful and difficult for family members. This study obtained qualitative and quantitative data from two studies conducted at the Margaret Blenkner…

  19. [Caring for a person affected by Alzheimer's disease: specific aspects of grief in family caregivers and their social support].

    Science.gov (United States)

    Malaquin-Pavan, Evelyne; Pierrot, Marylène

    2007-06-01

    Alzheimer's disease (DTA) leads to some behavioural, physical and psychic modifications in the patient that the natural helper (family-spouse-child) will have to face throughout the course of the disease. The authors have tried to identify the nature of losses experienced by helpers so as to bring out some preventive and curative support tracks. This preparatory research-action was conducted with 27 families through semi-directive conversations which enabled to reveal their difficulties (somatic-emotional-affective-organizational), their reactions of adaptation in echo with the losses of the patient along the course of the DTA as well as the elements enabling to maintain or not the ill person's family/close relation link. The analysis of obtained results is proposed according to the concepts of adaptation, affection and separation, systemic approach and coping. The comments and behaviours of helpers are put in relation with the symptoms of mourning as well as with the medical interactions, helper or not. Five chronological times were identified (before diagnosis-moment of the diagnosis-keeping at home-admission in institution-life in institution). The period of white mourning (connected to the loss of the recognition of his/her close relations by the patient) is mainly felt as a vector of suffering. As part of the dynamics of social support, the proposed tracks of nursing interventions mainly target the admission and life in institution; their aim is to offer an adapted support to natural helpers, whether they make the choice or not to support their close patients throughout the institutionalization. In appendices, all the key ideas helping to track down the elements contributing to maintain the ill person's helper/close relation link or accelerating his/her breaking down.

  20. Problems and benefits reported by stroke family caregivers: results from a prospective epidemiological study.

    Science.gov (United States)

    Haley, William E; Allen, Jessica Y; Grant, Joan S; Clay, Olivio J; Perkins, Martinique; Roth, David L

    2009-06-01

    Stroke symptoms can be very stressful for family caregivers, but most knowledge about the prevalence and stressfulness of stroke-related patient problems is derived from convenience samples. In addition, little is known about perceived benefits of the stroke caregiving experience. The purpose of this study was to determine the prevalence and stressfulness of stroke-related problems, and perceived benefits of caregiving, as reported by an epidemiologically derived sample of caregivers of stroke survivors. Stroke survivors (N=75) from a prospective epidemiological study of stroke, the REasons for Geographic and Racial Differences in Stroke (REGARDS) study, and their family caregivers were followed. Caregivers were given a comprehensive telephone interview 8 to 12 months after the stroke, using measures of stroke patient problems, caregiver appraisals of the stressfulness of these problems, and perceived benefits of caregiving. Caregivers rated patient problems with mood (depression, loneliness and anxiety), memory, and physical care (bowel control), as the most stressful, but reported prevalence of these problems was lower than those reported previously in studies using clinical samples. Caregivers also reported many benefits from caregiving, with over 90% reporting that caregiving enabled them to appreciate life more. Epidemiologically based studies of stroke caregiving provide a unique picture of caregiver strains and benefits compared with clinical studies, which tend to over-represent more impaired patients. Support for caregivers should include interventions to aid their coping with highly stressful mood, physical care, and cognitive problems of stroke patients, but should also attend to perceived benefits of caregiving.

  1. Family life of caregivers: A descriptive study of disruption of family activities, leisures and interaction of caregivers of children with cerebral palsy

    Directory of Open Access Journals (Sweden)

    Ramita Sardana

    2016-07-01

    Full Text Available Context: The purpose of this research was to study family life of caregivers who provide primary care to children with Cerebral Palsy. Aim: To study the family activities, leisure and interaction of caregivers of children with Cerebral Palsy. Settings and Design: Study was conducted in Dept. of Physical Medicine and Rehabilitation, AIIMS, New Delhi. Methods and Material: Study sample consisted of 65 primary caregivers of children with Cerebral Palsy. Questionnaires about family activities, leisure and interaction from Family burden interview schedule were used. Descriptive statistics and multiple regressions were used for data analysis. Results: All three domains i.e. disruption of routine family activities, family leisure and family interaction were found to be disrupted in caregivers of children with Cerebral Palsy. Various factors like education of caregiver, total children, family income, duration of caregiving, speech disturbance in child, seizures and mental retardation were found to effect scores of disruption of family activities, leisure and interaction. Conclusions: Caregivers of children with Cerebral palsy experience disruption of family activities, leisure and interaction. For proper care of children caregiver’s family life should be taken care of. Healthcare providers should enhance support networks to encourage and promote normal family activities, leisure and interactions of caregivers.

  2. [Needs and expectations of Alzheimer's disease family caregivers].

    Science.gov (United States)

    Amieva, H; Rullier, L; Bouisson, J; Dartigues, J-F; Dubois, O; Salamon, R

    2012-06-01

    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

  3. [Family caregiver issues: gender, privacy, and public policy perspectives].

    Science.gov (United States)

    Lee, I; Chou, Fan-Hao; Chen, Chung-Hey

    2011-04-01

    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.

  4. Religious Involvement and Telomere Length in Women Family Caregivers.

    Science.gov (United States)

    Koenig, Harold G; Nelson, Bruce; Shaw, Sally F; Saxena, Salil; Cohen, Harvey Jay

    2016-01-01

    Telomere length (TL) is an indicator of cellular aging associated with longevity and psychosocial stress. We examine here the relationship between religious involvement and TL in 251 stressed female family caregivers recruited into a 2-site study. Religious involvement, perceived stress, caregiver burden, depressive symptoms, and social support were measured and correlated with TL in whole blood leukocytes. Results indicated a U-shaped relationship between religiosity and TL. Those scoring in the lowest 10% on religiosity tended to have the longest telomeres (5743 bp ± 367 vs. 5595 ± 383, p = 0.069). However, among the 90% of caregivers who were at least somewhat religious, religiosity was significantly and positively related to TL after controlling for covariates (B = 1.74, SE = 0.82, p = 0.034). Whereas nonreligious caregivers have relatively long telomeres, we found a positive relationship between religiosity and TL among those who are at least somewhat religious.

  5. 77 FR 66525 - National Family Caregivers Month, 2012

    Science.gov (United States)

    2012-11-06

    .... Mothers and fathers resume care for children returning home 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 caregivers have an immeasurable impact on...

  6. Protecting the Health of Family Caregivers

    Centers for Disease Control (CDC) Podcasts

    2009-12-23

    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.

  7. Dementia: The Experience of Family Caregivers.

    Science.gov (United States)

    Chenoweth, Barbara; Spencer, Beth

    1986-01-01

    Caregivers of family members with dementia of the Alzheimer's type were surveyed for their experiences with early symptoms, obtaining a diagnosis, home care, and institutionalization. At each stage in the process of providing care there are new and different stresses that can be ameliorated by appropriate professional assistance. (Author)

  8. Young caregivers: effect of family health situations on school performance.

    Science.gov (United States)

    Siskowski, Connie

    2006-06-01

    Recognition, assessment, education, support, and research of young caregivers is yet to be well established throughout the United States. Studies show that as a result of family caregiving, employees miss work, arrive late, have telephone interruptions, and pass up promotions. Education is essentially the work-life of a student. Research among 12,681 public school students in Palm Beach County, Florida, shows that more than 1 in 2 middle and high school youth (6,210) have the dual role of young caregiver and student; one third of all students (67.1% of young caregivers) miss school/after school activities, do not complete homework, and/or are interrupted in their studying-their work-life. As demonstrated in the United Kingdom, assessment, education, and support of young caregivers in school and in the community can improve education outcomes. Proactive school nurses have the opportunity to identify, assess, and promote the well-being and academic success of U.S. student-caregivers.

  9. Caregiving for Dementia in Family Members: Caregiving Burden and Prospects for Effective Intervention.

    Science.gov (United States)

    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…

  10. A Model of Health for Family Caregivers of Elders

    Directory of Open Access Journals (Sweden)

    Florence M. Weierbach

    2016-12-01

    Full Text Available Family members who provide care to their loved ones experience changes in their own health. The caregiver health model (CGHM is a new model that identifies health holistically and identifies four determinant(s that contribute to the health status of the family caregiver. The purpose is to introduce the CGHM: Hypothesis 1: the determinants of health in the CGHM contribute to the health of the Caregiver, Hypothesis 2: the determinants of health contribute to changes in the caregivers’ health at 8 and 16 weeks, and Hypothesis 3: a change in health occurs from baseline to 8 and 16 weeks. Methods: A descriptive, longitudinal design used three data collection points and five survey instruments. Community recruitment (N = 90 occurred through word of mouth and newspapers. Inclusion criteria consisted of being a family caregiver, living in a rural residence, and providing care to elders with necessary activities of daily living (ADLs and/or instrumental ADLs (IADLs. Following a participant generated phone call to provide consent, caregivers received an initial study packet, additional packets were sent upon return of the previous packet. Analysis for the three hypotheses included multiple backwards stepwise linear regression, generalized estimating equations (GEE, and analysis of variance (ANOVA α = 0.05. Results: A significant decrease in mental (p < 0.01 but not physical health at 8 weeks (p = 0.38 and 16 weeks (p = 0.29 occurred over time. Two determinants displayed significant (p < 0.05 or less changes in mental and/or physical health at one or more time points. Study limitations include caregiver entry at varying times and self-report of elder nursing needs and medical conditions. Conclusions: Findings support two of the four determinants contributing to caregiver health.

  11. Familismo and its impact on the family caregiving of Latinos with Alzheimer's disease: a complex narrative.

    Science.gov (United States)

    Gelman, Caroline Rosenthal

    2014-01-01

    Despite the long-held view that Latinos' value and reliance on family leads to greater involvement of extended family in caring for sick members and reduced perception of burden, some research reports low levels of social support and high levels of distress among Latino caregivers. We explore this seeming discrepancy in a qualitative study of 41 Latino caregivers of family members with Alzheimer's disease, interviewing them regarding the role of familism in their caregiving experience. For some it facilitates caregiving in the traditional, expected manner. Other caregivers disavow its current relevance. Yet others feel a contrast between familism, which they may value in a general, abstract way and more personal, immediate negative feelings they are experiencing from caregiving. We discuss these complex, multidimensional findings, the variation among caregivers, and present implications for practice, policy, and research.

  12. Needs and experiences of family caregivers during marrow transplantation.

    Science.gov (United States)

    Stetz, K M; McDonald, J C; Compton, K

    1996-10-01

    To determine the information needs of family members of people undergoing marrow transplantation as well as their actions to meet those needs. Descriptive, cross-sectional, qualitative design. Marrow transplant units in the Pacific Northwestern United States. 19 adult family members of people who had undergone marrow transplants. Researchers conducted four focus group interviews. Three served as data generation interviews, and the fourth served as the validation interview. A transcriptionist recorded the subjects' responses, which then were analyzed using constant comparative techniques. Themes emerged from the data in five categories: (a) Preparing for Caregiving (seeking and acquiring health care, obtaining information and materials, and evaluating the validity of information), (b) Managing the Care (providing physical care, protecting, maintaining the patient's connection with life, and advocating), (c) Facing Challenges (personal and interpersonal stress, communication barriers with healthcare professionals, and healthcare system barriers), (d) Developing Supportive Strategies (community resources, personal and self-care resources, and healthcare system facilitators), and (e) Discovering Unanticipated Rewards and Benefits (personal growth and family cohesion). Family members, as well as patients undergoing marrow transplant, experience a unique set of information needs and demands as a result of this experience. However, these demands can be mitigated by actions that provide appropriate education strategies and foster a sense of caring and a nurturing way of interacting among the family, healthcare professionals, and the healthcare system. Healthcare professionals need to acknowledge the caregiving role and actively involve and support the family caregiver throughout the transplant experience.

  13. Family Caregivers for Cancer Patients in Thailand

    OpenAIRE

    2013-01-01

    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...

  14. The influence of Chinese culture on family caregivers of stroke survivors: A qualitative study.

    Science.gov (United States)

    Qiu, Xichenhui; Sit, Janet W H; Koo, Fung Kuen

    2017-07-05

    To explore and describe the caregiving experiences of Chinese stroke caregivers. Previous research has indicated that culture can have a significant impact on the stroke caregiving experience. Moreover, scant research exists on stroke caregivers' experience within the Chinese culture. A qualitative descriptive design was used. In-depth, semistructured interviews were conducted with 25 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Content analysis was also performed. Twenty-five family caregivers of stroke survivors were recruited for the study. On average, respondents were 66 years old (range 45-82 years). Of 25 interviewees, 76% were female, 64% were spouse-caregivers and 36% were children-caregivers. Three themes reflecting the influence of Chinese culture on stroke caregiving emerged from the interviews. (i) Caregiving role perception. Informants accepted caregiving for the sick family member as an expected part of life, a culturally prescribed obligation and an expression of reciprocal love. (ii) Coping strategies. Connecting with family resources and connecting with inner strength were frequently reported coping strategies. (iii) Self-sacrifice. Informants identified self-reliance and feeling of restraint in their utilisation or access of formal caregiving service. Chinese caregivers sacrifice themselves for the care recipients regardless of the hardships and the neglect of their own health. Our findings provide a comprehensive and culturally sensitive perspective in understanding the experience of stroke caregivers in Chinese communities. Cultural and religious backgrounds were found to influence Chinese stroke caregivers' experience, coping strategies and self-sacrifice behaviour in idiosyncratic ways. Research on the practice of culture can serve as a basis for the formulation of specific policies and effective interventions for supporting stroke caregivers of different cultural backgrounds. © 2017 The

  15. [Subjective physical and mental health characteristics of male family caregivers].

    Science.gov (United States)

    Nagai, Kuniyoshi; Hori, Yoko; Hoshino, Junko; Hamamoto, Rituko; Suzuki, Yoko; Sugiyama, Akiko; Niimi, Yukari; Kondo, Takaaki; Tamakoshi, Koji; Sakakibara, Hisataka

    2011-08-01

    Due to the increased population of elderly people requiring care and assisted living care, as well as changes in the social structure, the number of males playing a role in home care has therefore been increasing each year. The purpose of this study was to clarify characteristics related to subjective mental and physical health of male family caregivers based on a comparison with male non-caregivers. The subjects comprised 52 male family caregivers (caregiver group) who provide care for those requiring at-home care at level 3 or above, or who provided care for people with dementia in cases at a level below 3, with an average age and standard deviation of 69.3 +/- 10.9 years old. The comparison group comprised 52 people who underwent regular health checkups in K city, whose gender and ages, by 10-year age group, were matched to the subjects on a 1:1 basis, and whose average age and standard deviation were 69.2 +/- 11.1 years old. The research was conducted over ther period from December 2005 to April 2007. The survey was conducted with a self-answering format, and subjects were asked questions about such matters as lifestyle, QOL, psychosocial stress and coping with stress. The average age of people requiring care was 75.7 +/- 9.5 years old, and it became apparent that elderly caregivers generally provide care for other elderly people. In a health-related QOL (SF-8), care-giver group were significantly low in "General Health" and "Bodily Pain" in the physical health domain. In the mental health domain, "Mental Health" and mental health summary score of the care-giver group were significantly low. Regarding lifestyle, it was apparent that the care-giver group had significantly fewer sleeping hours than the control group and the PSQI score was also lower. Coping scores were significantly low for the caregiver group regarding 2 items, "Evasive Thinking" and "Recreation", and this indicated a tendency toward not adopting an evasive type of coping. It became clear that

  16. (Handicapped) caregiver: the social representations of family members about the caregiving process.

    Science.gov (United States)

    de Azevedo, Gisele Regina; Santos, Vera Lúcia Conceição de Gouveia

    2006-01-01

    This study aimed to analyze what looking after physically disabled persons with spinal cord injury by trauma means to their caregivers and family members. The analysis of the testimony of eight caregivers, obtained in open interviews, which was methodologically based on the Social Representations Theory (SR), pointed out two main routes: coping with the suffering process in care practice and the troubled waters that permeate this suffering process. These two routes, characterized as SR Central Core and Peripheral System, respectively, consisted of themes like the way of looking at impairment, affectivity, religiosity, social-economical changes and (lack of) technical and institutional support. The results show a handicapped caregiver dedicated to look after someone who is physically disabled, considered incapacitated, and who leads his or her chores with distress and privations, based on guilt and religiosity, supported by ambiguous affection and affected by deteriorating social-economical changes and (lack of) technical and institutional support to practice an activity that implies so many peculiarities. The transformation alternatives of these caregivers' daily life principally lead to a symbiosis of disability with the patient - to live for the physically disabled - or yet, for a few, a sketch to restart personal life projects - to live with the physically disabled.

  17. Zoning, accessory dwelling units, and family caregiving: issues, trends, and recommendations.

    Science.gov (United States)

    Liebig, Phoebe S; Koenig, Teresa; Pynoos, Jon

    2006-01-01

    This article explores the relationship between zoning regulations and co-residential family caregiving in the United States. It first provides an overview of U.S. housing policies, especially zoning. We then describe major changes in family structure and composition in the United States with their implications for caregiving and discuss how multigenerational housing options, particularly accessory dwelling units (ADUs) in single-family homes, can help support family caregiving. After an overview of zoning policies and actions that inhibit ADU production, we document current trends, incorporating information from a small non-random study of ADU activity we conducted in 2004. Finally, we present recommendations for promoting more multigenerational housing as a supplement to other family support programs (e.g., dependent care assistance, family caregiver payments) and as a source of affordable, supportive housing for those families choosing co-residence as their eldercare solution.

  18. Protocol group education for family caregivers of elderly dependents

    Directory of Open Access Journals (Sweden)

    Cristina Anguita Carpio

    2012-03-01

    Full Text Available Family is the main care source for the dependent person. The act of looking after somebody, involves the development of multiple tasks, apart from spending a lot of time. This implies a series of requirements that would be able to damage the family caregivers’ quality of life, and definitively, their health. Objetive: training for family caregivers to provide quality care, in order to succeed in this project, we establish three specific aims: improving the information and training, increase self-care abilities and focus on resources and support services for informal caregivers. Methods: We are going to implement an educative intervention in a group of 12 informal caregivers of people over 65 years, dependent on chronic diseases and develop home care. The program will be composed of 10 sessions, each one of two-hour-long. The first session will consist of an introduction and the last session will be reserved to solve doubts and to deal with the assessment of the program. Throughout the rest of sessions, contents about training, self, resources and assistance services for caregivers will be proposed. In order to evaluate the efficiency of the program, a multiple choice questionnaire will be taken both al the beginning and at the end of the different sessions. In order to evaluate the human resources and the applied methodology, another questionnaire will be passed.

  19. Cancer caregivers advocate a patient- and family-centered approach to advance care planning.

    Science.gov (United States)

    Michael, Natasha; O'Callaghan, Clare; Baird, Angela; Hiscock, Nathaniel; Clayton, Josephine

    2014-06-01

    Cancer caregivers have important roles in delivering practical, emotional, and end-of-life support to patients; however, they express multiple unmet needs, particularly information on future care planning. Early regular communication and decision making may improve access to timely information, alleviate anxiety, reduce uncertainty, and improve coping strategies. This study examines how cancer caregivers view advance care planning (ACP) to inform an ACP program in an Australian cancer center. This study used a qualitative descriptive design with grounded theory overtones. Eighteen caregivers of patients from lung and gastrointestinal tumor streams participated in focus groups or semistructured interviews, which incorporated the vignette technique. Caregivers believe that, although confronting, ACP discussions can be helpful. Conversations are sometimes patient initiated, although caregivers may intend to sensitively broach conversations over time. Findings highlight the impact of caregiver hierarchies, adaptive family decision-making styles, and complex cultural influences on decision making. Some caregivers may develop subsidiary care intentions, based on "knowing" or overriding patients' desires. Hindrances on caregivers supporting patients' ACPs include limited information access, patient or caregiver resistance to engage in conversations, and ACPs association in oncology with losing hope. Many caregivers wanted professional support and further opportunities to obtain information, develop subsidiary plans, and help patients engage in ACP discussions. Findings highlight the influence of cancer caregivers and family dynamics over ACP decisions and actualization of future care plans. A patient- and family-centered care approach to ACP, promoting shared decision making and caregiver support, is recommended. Given that caregivers may override and, plausibly, misinterpret patients' desires, caregivers' subsidiary planning warrants further investigation. Copyright

  20. Caregiving to persons living with HIV/AIDS: experiences of Vietnamese family members.

    Science.gov (United States)

    Lundberg, Pranee C; Doan, Thoa Thi Kim; Dinh, Thu Thi Xuan; Oach, Nhung Kim; Le, Phong Hoang

    2016-03-01

    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

  1. The Impact of Family Functioning on Caregiver Burden among Caregivers of Veterans with Congestive Heart Failure

    Science.gov (United States)

    Moore, Crystal Dea

    2010-01-01

    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,…

  2. Perceived Stress in Family Caregivers of Individuals With Mental Illness.

    Science.gov (United States)

    Masa'Deh, Rami

    2017-06-01

    The current study aimed to measure the stress levels of family caregivers of individuals with mental illness and compare their stress levels according to the diagnosis and other sociodemographic characteristics. The sample comprised 310 family caregivers of individuals with mental illness in Jordan. Family caregivers completed a demographic checklist and the Arabic version of the Perceived Stress Scale 10-Item (PSS-10) questionnaire. A significant difference was found in PSS-10 levels among family caregivers according to gender, diagnosis of their family member, and time since diagnosis. Female caregivers reported significantly higher stress levels than male caregivers. Family members of individuals with schizophrenia reported the highest stress levels (p stress levels in family members of individuals with mental illness may be helpful when designing interventions to reduce such stress. [Journal of Psychosocial Nursing and Mental Health Services, 55(6), 30-35.]. Copyright 2017, SLACK Incorporated.

  3. Caregiver criticism, help-giving, and the burden of schizophrenia among Mexican American families.

    Science.gov (United States)

    Villalobos, Bianca T; Ullman, Jodie; Krick, Tracy Wang; Alcántara, Darcy; Kopelowicz, Alex; López, Steven R

    2017-09-01

    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

  4. [Traumatic events and psychological support for caregivers].

    Science.gov (United States)

    Seyeux, Anne-Laure; Favodon, Benoît

    2017-04-01

    When a major event such as a terrorist attack occurs, caregivers may not only be confronted with a life-endangering situation as they tend to the victims but are also faced with particularly harrowing scenes, the massive influx of seriously injured victims, the distress of the injured and their families and the disorganisation of the care structure. The psychological trauma must be treated on an individual or collective level. Copyright © 2017 Elsevier Masson SAS. All rights reserved.

  5. Family caregivers in public tertiary care hospitals in Bangladesh: risks and opportunities for infection control.

    Science.gov (United States)

    Islam, M Saiful; Luby, Stephen P; Sultana, Rebeca; Rimi, Nadia Ali; Zaman, Rashid Uz; Uddin, Main; Nahar, Nazmun; Rahman, Mahmudur; Hossain, M Jahangir; Gurley, Emily S

    2014-03-01

    Family caregivers are integral to patient care in Bangladeshi public hospitals. This study explored family caregivers' activities and their perceptions and practices related to disease transmission and prevention in public hospitals. Trained qualitative researchers conducted a total of 48 hours of observation in 3 public tertiary care hospitals and 12 in-depth interviews with family caregivers. Family caregivers provided care 24 hours a day, including bedside nursing, cleaning care, and psychologic support. During observations, family members provided 2,065 episodes of care giving, 75% (1,544) of which involved close contact with patients. We observed family caregivers washing their hands with soap on only 4 occasions. The majority of respondents said diseases are transmitted through physical contact with surfaces and objects that have been contaminated with patient secretions and excretions, and avoiding contact with these contaminated objects would help prevent disease. Family caregivers are at risk for hospital-acquired infection from their repeated exposure to infectious agents combined with their inadequate hand hygiene and knowledge about disease transmission. Future research should explore potential strategies to improve family caregivers' knowledge about disease transmission and reduce family caregiver exposures, which may be accomplished by improving care provided by health care workers. Copyright © 2014 Association for Professionals in Infection Control and Epidemiology, Inc. All rights reserved.

  6. Helping patients and their family caregivers cope with cancer.

    Science.gov (United States)

    Northouse, Laurel L

    2012-09-01

    Family caregivers face multiple demands as they care for their loved ones with cancer, and these demands have increased dramatically in recent years. Patients with cancer now receive toxic treatments in outpatient settings and return home to the care of their family members. Some patients receive in-home infusions, which were unheard of a few years ago. Family caregivers provide tasks that were previously provided by nurses; however, caregivers lack the educational preparation that nurses receive.

  7. Balancing needs as a family caregiver in Huntington's disease

    DEFF Research Database (Denmark)

    Røthing, Merete; Malterud, Kirsti; Frich, Jan C.

    2015-01-01

    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...... experiences fromcare-giving in all stages of the disease. We conducted semi-structuredinterviews with 15 family caregivers in Norway. The transcribed materialwas analysed by use of systematic text condensation, a method for cross-case thematic analysis of qualitative data. We found that family membersused...... various coping strategies, adjusted to the stage and progression ofHD. They tried to regulate information about the disease, balancingconsiderations for protection and disclosure, within and outside thefamily. The participants made efforts to maintain a balance between theirown needs in everyday life...

  8. Influence of personality on depression, burden, and health-related quality of life in family caregivers of persons with dementia.

    Science.gov (United States)

    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

    2017-02-01

    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.

  9. Effects of rehabilitation services on anxiety, depression, care-giving burden and perceived social support of stroke caregivers.

    Science.gov (United States)

    Karahan, Ali Yavuz; Kucuksen, Sami; Yilmaz, Halim; Salli, Ali; Gungor, Tayfun; Sahin, Muhammed

    2014-01-01

    Few data are available on the specific care giving-related problems of stroke patient's caregivers and factors that influence the burden of these caregivers. To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. A prospective clinical trial. Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM). The Beck Anxiety Scale (BAS) and the Beck Depression Scale (BDS) were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS) for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS) for perceived social support assessment. A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p Caregivers accept the rehabilitation period as important social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients' functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with stress effectively.

  10. Rural Caregivers for a Family Member With Dementia: Models of Burden and Distress Differ for Women and Men.

    Science.gov (United States)

    Stewart, Norma J; Morgan, Debra G; Karunanayake, Chandima P; Wickenhauser, Joseph P; Cammer, Allison; Minish, Duane; O'Connell, Megan E; Hayduk, Leslie A

    2016-02-01

    Forecasts of increasing prevalence of dementia in rural settings, coupled with reliance on family caregiver support, indicate that a greater understanding of caregiver distress in these contexts is necessary. The purpose of this study was to examine family caregiver burden and severity of distress on the day that a family member was diagnosed with dementia at a memory clinic that serves a rural population. Participants in this retrospective study were 231 primary family caregivers of a rural community-dwelling person with dementia. On the diagnostic day, women reported more burden and severity of distress than men and spouses reported more severity of distress than adult children. A structural equation model was not supported for the entire sample, but was supported for women caregivers only (n = 161). Caregiver distress related to dementia-specific behaviors explained both global distress and burden. Patients' functional decline was related to caregiver burden.

  11. Needs of family caregivers of stroke patients: a longitudinal study of caregivers’ perspectives

    Science.gov (United States)

    Tsai, Pei-Chun; Yip, Ping-Keung; Tai, John Jen; Lou, Meei-Fang

    2015-01-01

    Background After a stroke, patients often suffer from varying degrees of disability that require acute inpatient treatment and extended care at home. Therefore, the caregivers assume multiple responsibilities that can result in stress, particularly when their own needs are inadequately addressed during the patient’s recovery. Objectives This study aimed to explore the changing needs of family caregivers of stroke patients and factors related to the needs in four stages, before the transfer from intensive care unit to neurological unit, before discharge, 2 weeks post-hospitalization, and 3 months post-hospitalization. Methods The design of this study was based on longitudinal research, and the participants were family caregivers of stroke patients. Sixty family caregivers were recruited in this study. Data were collected at four time points by questionnaire. Results We found that the total number of needs of family caregivers decreased as the illness duration increased and that needs differed significantly between the four time points (Pcaregivers were the National Institutes of Health Stroke Scale scores of patients on admission, length of hospital stay, and physical dependence of patients. Conclusion Family caregivers expected to obtain assistance and related care information from professionals during the course of the disease. Assessing the needs of family caregivers is important for health care workers in understanding problems from the caregivers’ perspectives. Relevant information and counseling should be provided to family caregivers to help them access support when needed. PMID:25834409

  12. Family Dynamics and Personal Strengths among Dementia Caregivers in Argentina.

    Science.gov (United States)

    Elnasseh, Aaliah G; Trujillo, Michael A; Peralta, Silvina Victoria; Stolfi, Miriam E; Morelli, Eliana; Perrin, Paul B; Arango-Lasprilla, Juan Carlos

    2016-01-01

    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.

  13. Family Dynamics and Personal Strengths among Dementia Caregivers in Argentina

    Science.gov (United States)

    Elnasseh, Aaliah G.; Trujillo, Michael A.; Peralta, Silvina Victoria; Stolfi, Miriam E.; Morelli, Eliana; Perrin, Paul B.

    2016-01-01

    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. PMID:27413574

  14. Relationship of caregiver burden with coping strategies, social support, psychological morbidity, and quality of life in the caregivers of schizophrenia.

    Science.gov (United States)

    Kate, Natasha; Grover, Sandeep; Kulhara, Parmanand; Nehra, Ritu

    2013-10-01

    To evaluate the relationship of caregiver burden as assessed by using Hindi Involvement Evaluation Questionnaire (IEQ) with coping strategies, social support, psychological morbidity, and quality of life of caregivers of patients with schizophrenia. Additionally, the relationship of caregiver-burden with sociodemographic variables, and clinical variables, including severity of psychopathology and level of functioning of patients, was studied. The study included 100 patients with schizophrenia and their caregivers recruited by purposive random sampling. Among the four domains of IEQ, highest number of correlations emerged with tension domain. Tension domain had positive correlation with the caregiver being single, time spent in caregiving per day, and use of avoidance, collusion, and coercion as coping strategies. Additionally, tension domain was associated with poor quality of life in all the domains of WHO-QOL Bref and was associated with higher psychological morbidity. Worrying urging-I domain of IEQ correlated with frequency of visits, higher use of problem focused coping and poor physical health as per the WHO-QOL Bref. Worrying urging-II domain of IEQ had positive correlation with higher level of positive symptoms, lower level of functioning of the patient, younger age of caregiver, caregiver being unmarried, and higher use problem focused and seeking social support as coping strategies. Supervision domain of IEQ correlated positively with lower income, being an unmarried caregiver, from an urban locality and non-nuclear family. Supervision domain was associated with poor physical health as assessed by WHO-QOL Bref. Caregiving burden, especially tension is associated with use of maladaptive coping strategies, poor quality of life and higher level of psychological morbidity in caregivers. Copyright © 2013 Elsevier B.V. All rights reserved.

  15. Health Consequences to Immigrant Family Caregivers in Canada

    OpenAIRE

    Suwal, Juhee Varacharya

    2010-01-01

    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 ti...

  16. 1型糖尿病患者主要照顾者负担水平与其社会支持状况的相关性研究%The relationship between social support and caregiver burden among main family caregivers of Type 1 diabetes mellitus children

    Institute of Scientific and Technical Information of China (English)

    刘晓鑫; 李乐之; 杨玲风; 刘芳; 陈一川

    2014-01-01

    目的:调查1型糖尿病(T1DM)患者照顾者负担水平与社会支持状况及两者相关性。方法:采用一般资料问卷、照顾者负担量表及社会支持评定量表对65例T1DM患者照顾者进行问卷调查。结果:T1DM患者照顾者负担总分为(33.0±14.9)分,仅13.8%的照顾者无照顾负担;社会支持总分为(35.6±6.6)分,绝大多数(95.4%)照顾者社会支持尚未达到高水平。总社会支持水平与总负担及负担各维度呈显著负相关(P<0.05);主观支持维度与总负担及负担各维度呈显著负相关(P<0.05);客观支持维度与总负担及角色负担维度呈显著负相关(P<0.05)。结论:T1DM患者照顾者普遍存在不同程度的照顾负担,社会支持多处于中低水平;所获社会支持程度越高,感知的照顾者负担越轻。护理人员应给予照顾者恰当的社会家庭支持及相关知识的指导,减轻其身心负担,使其能更有效地承担照顾患者的责任,优化患者疾病控制情况。%Objective:To investigate the relationship between social support and caregiver burden among main family caregivers of Type 1 Diabetes Mellitus (T1DM) Patients. Methods:Totally 65 main family caregivers of T1DM patients were recruited by convenience sampling method and investigated by demographic questionnaire, Zarit Burden Interview (ZBI) and Social Support Rating Scale (SSRS). Results:The total score of ZBI was (33.0±14.9) and only 13.8%caregivers felt no caregivers burden. The total score of SSRS was (35.6±6.6) and most of them (95.4%) didn’t reach a high level. The total score and each dimension of SSRS were negatively related to the score of ZBI (P<0.05). Dimension of subjective support was negatively related to the total score and each dimension of ZBI (P<0.05) and dimension of objective support was negatively related to ZBI and dimension of role burden (P<0.05). Conclusion:There are different levels of caregiver burden among main

  17. Potentially preventable hospitalizations in dementia: family caregiver experiences.

    Science.gov (United States)

    Sadak, Tatiana; Foster Zdon, Susan; Ishado, Emily; Zaslavsky, Oleg; Borson, Soo

    2017-07-01

    Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions. Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers' reactions to the hospitalization and recollections of the events leading up to it. Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises. This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

  18. Universality of ageing: family caregivers for elderly cancer patients

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    Lea eBaider

    2014-07-01

    Full Text Available The world population is ageing, with the proportion of older people (65+ years expected to reach 21% in 2050 and to exceed the number of younger people (aged 15 or less for the first time in history. Because cancer is particularly a chronic disease of older people, a large increase in the number of elderly patients with cancer is anticipated. The estimated number of new cancer cases worldwide among people over 65 is expected to grow from about 6 million in 2008 to more than 11 million during the coming decade. By 2030, individuals over 65 are expected to account for 70% of all cancer patients in the Western world.Along with the increase in oncology patients, the number of older people caring for their ill spouses or other relatives is also growing, with the ensuing toll on these caregivers causing major concern, especially in western countries.In different societies the characteristics of family caregiver stressors, cultural norms concerning care giving, and the availability of support have a huge impact on those providing care. Any study of older caregivers of older cancer patients requires an integrative evaluation of ageing that takes into account cultural, social, psychological, and behavioral variables.This review proposes a critical discussion of the multidimensionality of the caregiving and of the impact that age, culture and gender have on it.

  19. Caregiving activities closely associated with the development of low-back pain among female family caregivers.

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    Suzuki, Kishiko; Tamakoshi, Koji; Sakakibara, Hisataka

    2016-08-01

    To describe what effects low back pain has on the daily lives of female family caregivers and to elucidate the caregiving factors associated with its development. Low back pain is a common musculoskeletal symptom in caregivers. However, few detailed studies have examined the association of low back pain with the daily lives of female family caregivers or which caregiving activities lead to their low back pain. The elucidation of these issues will contribute to the prevention and treatment of their low back pain. A cross-sectional study. Japanese female family caregivers (n = 156) completed a self-administered questionnaire assessing lifestyle, health status, daily activity and caregiving situation. Correlation analysis measured the association between low back pain and daily activity. Logistic regression analysis identified care activities related to low back pain. Thirty-five (22·4%) participants almost always experienced low back pain. The severity of low back pain was significantly and positively associated with difficulty in daily activities, especially bending and extending the lower back. As for care situation factors and caregiving activities, night care, assisting the family member to stand up and to lie down, dealing with problem behaviours, and taking medication were associated with the development of low back pain. After reclassifying the respective caregiving activities, those involving body repositioning and those mainly performed in a static position showed significant associations. Low back pain in female family caregivers negatively affects their daily activities and certain caregiving activities are involved in the development of low back pain. Clinical nurses understand the situation of female caregivers and could prevent the development of low back pain with early intervention by providing adequate strategies to alleviate the burden of identified care activities related to low back pain. © 2016 John Wiley & Sons Ltd.

  20. Financial burden of stroke on family and caregiver in India: a literature review

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    Anil K. Mishra

    2016-09-01

    Full Text Available As life expectancy increases, India will face enormous socioeconomic burden to meet the costs of integrated rehabilitation of subjects with stroke. Caring for stroke patients leads to caregiver (CG strain and financial burden. The CG burden is perceived differently in the Indian background depending on the society and culture. Caregiving stress has the potential to hamper rehabilitation of the patients and is of vital importance both as a research topic and the focus of clinical care. Cost and burden of informal care giving are high rural Indian community. Financial stress was prominent and common among the socioeconomically weaker division. The financial costs associated with family caregiving were a significant factor in caregiving burden, both for the male and female caregivers. Despite the high financial burden, limited recent studies have focused on costs associated with stroke in the India. Establishing total stroke-related costs is essential to evaluate and support the health economic research on stroke systems of care. Stroke care giving studies may help to better understand care giving impact, and also to find the most effective interventions to improve the quality of life of stroke patients and their caregivers, reduce the burden and depression of caregivers. Policies and programs to alleviate the financial burden and to provide social and financial support for these family caregivers are equally important for both family caregivers and their care receivers. [Int J Res Med Sci 2016; 4(9.000: 3675-3678

  1. Emotional and instrumental support influencing male caregivers for people with dementia living at home.

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    Nishio, Midori; Kimura, Hiromi; Ogomori, Koji; Ogata, Kumiko

    2017-05-01

    Object: To clarify the emotional and instrumental support influencing male caregivers for people with dementia living at home. Patients/Materials and Methods: The subjects were 298 male caregivers. Nursing care burden was assessed using the Zarit Caregiver Burden Scale. Ability to cope with care problems was assessed using the Nursing Care Problems Coping Scale for Male Caregivers for People with Dementia Living at Home (NCSM). Emotional support was assessed using the Emotional Support Network Scale. Instrumental support was assessed using the question "Do you have someone to help when you have a problem with nursing care?". Results: There was a significant correlation (P < 0.04) between the point (index) of NCSM and Zarit Caregiver Burden Scale. A positive significant correlation was found in three coping styles. A negative significant correlation was found in one coping style, and no significant correlation in one coping style. The 'Solve the problem' coping style was linked to support from both within and beyond the family. Both 'Emotional avoidance' and 'Cognitive transformation' coping styles were linked to support from within the family, and "Request assistance" style only to external support. There were no correlations between the source of support and the "Careful supervision and waiting" coping style. Conclusion: Emotional and instrumental support for male caregivers was more than three times more likely to be obtained from within the family than outside it. With families becoming smaller, it is becoming more important for communities and society in general to provide emotional and instrumental support for male caregivers. Male caregivers need support from someone with whom they feel comfortable. It is particularly necessary to consider how to support male caregivers who use the "Emotional avoidance" coping style.

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

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    Gómez-Marcos Manuel Á

    2011-04-01

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

  3. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials.

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    Northouse, Laurel L; Katapodi, Maria C; Song, Lixin; Zhang, Lingling; Mood, Darlene W

    2010-01-01

    Family caregivers of cancer patients receive little preparation, information, or support to perform their caregiving role. However, their psychosocial needs must be addressed so they can maintain their own health and provide the best possible care to the patient. The purpose of this article is to analyze the types of interventions offered to family caregivers of cancer patients, and to determine the effect of these interventions on various caregiver outcomes. Meta-analysis was used to analyze data obtained from 29 randomized clinical trials published from 1983 through March 2009. Three types of interventions were offered to caregivers: psychoeducational, skills training, and therapeutic counseling. Most interventions were delivered jointly to patients and caregivers, but they varied considerably with regard to dose and duration. The majority of caregivers were female (64%) and Caucasian (84%), and ranged in age from 18 to 92 years (mean age, 55 years). Meta-analysis indicated that although these interventions had small to medium effects, they significantly reduced caregiver burden, improved caregivers' ability to cope, increased their self-efficacy, and improved aspects of their quality of life. Various intervention characteristics were also examined as potential moderators. Clinicians need to deliver research-tested interventions to help caregivers and patients cope effectively and maintain their quality of life.

  4. Seeking harmony in the provision of care to the stroke-impaired: views of Chinese family caregivers.

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    Lee, Regina L T; Mok, Esther S B

    2011-05-01

    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

  5. Web-based health interventions for family caregivers of elderly individuals: A Scoping Review.

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    Wasilewski, Marina B; Stinson, Jennifer N; Cameron, Jill I

    2017-07-01

    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

  6. The Effect of Psychosocial Support Intervention on Depression in Patients with Dementia and Their Family Caregivers: An Assessor-Blinded Randomized Controlled Trial

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    Froydis Kristine Bruvik

    2013-10-01

    Full Text Available Background/Aim: A three-component tailored psychosocial 12-month assessor-blinded randomized controlled trial to reduce depression in people with dementia (PWD and carers was conducted. Methods: A total of 230 home-dwelling dyads of PWD and their carers were randomized to usual care or intervention consisting of three components over 12 months. Primary outcomes were the difference between the baseline and 12-month score on the Cornell Scale of Depression in Dementia (CSDD in the PWD and on the Geriatric Depression Scale (GDS in the carers. Results: The intent-to-treat difference between the baseline and 12- month change score was not significant between the intervention and control groups for the CSDD (p = 0.95 or GDS (p = 0.82. Conclusions: The trial did not show a significant difference between usual care and the intervention on depressive symptoms in PWD or their family caregivers.

  7. Positive feelings of caregiving among Latino Alzheimer's family caregivers: understanding the role of spirituality.

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    Hodge, David R; Sun, Fei

    2012-01-01

    This study used structural equation modeling to examine the effects of spirituality on positive aspects of caregiving (PAC) among a sample of American Latino family members caring for a relative with Alzheimer's disease (AD). Participants consisted of 209 Latino caregivers (CGs) drawn from baseline data from the Resources for Enhancing Alzheimer's Caregivers Health II study. The findings indicate that spirituality is positively related to PAC and may partially mediate the effect of subjective stress on PAC. AD CGs typically provide better care when they perceive the caregiving experience to be satisfying and rewarding. Toward this end, gerontological practitioners should adopt a proactive stance to ensure Latino AD CGs can operationalize their spiritual strengths.

  8. The role of family caregivers in HIV medication adherence.

    Science.gov (United States)

    Beals, K P; Wight, R G; Aneshensel, C S; Murphy, D A; Miller-Martinez, D

    2006-08-01

    This study examines the role that mid-life and older wives and mothers play in promoting medication adherence among their HIV-infected husbands or adult sons who require daily living assistance. Interviews were conducted with 112 caregiving dyads, with caregivers reporting on their own behaviours and attitudes towards medications, and care-recipients (persons living with HIV [PLH]) providing information about their own adherence practices. By examining how caregiver characteristics, behaviours, and attitudes may influence PLH adherence it is explicitly recognized that caregivers and PLH are linked within a caregiving dyad. Findings indicate that caregivers often remind PLH to take medications, but these reminders are not significantly associated with adherence. Caregivers also report strong attitudes about medication hassles, concerns over treatment failure and general concerns about adherence. Controlling for background characteristics, high perceived adherence hassles on the part of the caregiver were associated with low PLH adherence, providing evidence of shared influence within the caregiving dyad. Adherence interventions may maximize their effectiveness if they consider the role of the family caregiver because these data suggest that caregiver attitudes are linked with PLH adherence behaviours.

  9. Family caregivers' assessments of caring for a relative with dementia: a comparison of urban and rural areas.

    Science.gov (United States)

    Ehrlich, Kethy; Boström, Anne-Marie; Mazaheri, Monir; Heikkilä, Kristiina; Emami, Azita

    2015-03-01

    This study aimed to describe and compare urban and rural family caregivers' reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors. Most studies on family caregivers' experiences caring for older people with dementia have been conducted in urban areas, and little is known about the experiences of family caregivers living in rural areas. A cross-sectional study design was used. A total of 102 caregivers (response rate 85%) from urban (n=57) and rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and demographic information. Data were analysed using descriptive and inferential statistics and linear regression models. Overall, family caregivers reported high satisfaction even if they also reported high impact on finances and daily living. Rural caregivers experienced a higher negative impact on finances but reported more support from family members than urban caregivers. Age, gender and relationship were significantly associated with four of the five CRA subscales. Educational level and geographical setting were not associated with any of the CRA subscales. The results of the study raise questions about the financial situation of older female caregivers and on the expectations of built-in family structures in urban and rural areas. Further studies focusing on the meaning and constitution of a family would help us to understand how these factors influence family caregiving both in rural and urban areas. To provide person-centred care and to avoid stereotyped caregiving, a better picture of traditions in family caregiving can improve a more differentiated and appropriate professional caregiving pliable with the cultural context in which it is carried out. © 2014 John Wiley & Sons Ltd.

  10. Family Stigma and Caregiver Burden in Alzheimer's Disease

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    Werner, Perla; Mittelman, Mary S.; Goldstein, Dovrat; Heinik, Jeremia

    2012-01-01

    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…

  11. Clinical Efficacy of Psychoeducational Interventions with Family Caregivers

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    Limiñana-Gras, Rosa M.; Colodro-Conde, Lucía; Cuéllar-Flores, Isabel; Sánchez-López, M. Pilar

    2016-01-01

    The goal of this study is to investigate the efficacy of psychoeducational interventions geared to reducing psychological distress for caregivers in a sample of 90 family caregivers of elderly dependent (78 women and 12 men). We conducted an analysis of the statistical and clinical significance of the changes observed in psychological health…

  12. Family Stigma and Caregiver Burden in Alzheimer's Disease

    Science.gov (United States)

    Werner, Perla; Mittelman, Mary S.; Goldstein, Dovrat; Heinik, Jeremia

    2012-01-01

    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…

  13. Telephone Networks Connect Caregiving Families of Alzheimer's Victims.

    Science.gov (United States)

    Goodman, Catherine Chase; Pynoos, Jon

    1988-01-01

    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…

  14. Experiences of the family caregiver of a person with intestinal ostomy due to colorectal cancer

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    Gláucia Sousa Oliveira

    2014-04-01

    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.

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

    Science.gov (United States)

    Tseng, Chien-Ning; Huang, Guey-Shiun; Yu, Po-Jui; Lou, Meei-Fang

    2015-01-01

    Background 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. Purpose To describe experiences of caregivers managing incontinence in stroke survivors. Design This qualitative descriptive study employed a grounded-theory approach. Methods 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. Findings 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. Conclusion 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. PMID:26066345

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

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    Chien-Ning Tseng

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

  17. THE IMPACT OF ADDITIONAL SUPPORT SERVICES ON CAREGIVERS OF HOSPICE PATIENTS AND HOSPICE SOCIAL WORKERS*†

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    EMPEÑO, JESSICA; RAMING, NATASHA T. J.; IRWIN, SCOTT A.; NELESEN, RICHARD A.; LLOYD, LINDA S.

    2014-01-01

    Family caregivers often suffer higher levels of physical and emotional distress when caring for a chronically or terminally ill family member. Providing this kind of care to a loved one at the end of life contributes to increased stress, health problems, and a decreased quality of life. The Hospice Caregiver Support Project provided support services to caregivers identified by the hospice social worker as needing this support and/or assistance. Results from the project show that offering additional services relieved caregiver stress by allowing the caregiver time away from their caregiving role and reducing feelings of guilt and worry, and increased hospice social worker satisfaction with their ability to respond to the needs of hospice patients and caregivers. PMID:23977779

  18. Apoyo telefónico: Una estrategia de intervención para cuidadores familiares de personas con enfermedad crónica Telephone support: A strategy of intervention for family caregivers in chronic health conditions

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    Sandra Lucrecia Romero Guevara

    2011-08-01

    Full Text Available Introducción: El apoyo telefónico es una intervención que permite dar información, educación y soporte psicosocial a los cuidadores familiares, por tanto es importante describir las diferentes alternativas con su correspondiente metodología e impacto en la experiencia de ser cuidador. Objetivo: Revisar sistemáticamente la literatura en relación con la intervención apoyo telefónico y su eficacia en la población intervenida. Métodos: Se realizó una búsqueda de artículos en las diferentes bases de datos, publicados entre los años 1990 y 2010, considerando la solidez y la calidad de la evidencia sobre la temática. Resultados: De 17 estudios que describieron el apoyo telefónico para cuidadores familiares, 6 tuvieron un alto nivel de evidencia, permitiendo un análisis comparativo para determinar la eficacia de la intervención. Conclusión: Existen sólidos resultados que soportan la eficacia del apoyo telefónico en la disminución de la ansiedad, la depresión, el estrés y en general mejoría del bienestar de los cuidadores. Salud UIS 2011; 43 (2: 191-201Introduction: The telephone support is an intervention that can provide information, education and psychosocial support to family caregivers, therefore, is important to describe the different alternatives with theirs methodology and its impact on the experience of being caregiver. Purpose: Reviewing systematically the literature in relation with the intervention of telephone support and his efficacy in the population studied. Methods: We performed a structured search of the articles in the different databases, published between 1990 and 2010, recognizing the strength and quality of evidence. Results: Of 17 studies that described the telephone support as an intervention for family caregivers, only 6 studies were considered high quality, enabling a comparative analysis to determine the efficacy of the intervention. Conclusion: There is solid evidence supporting the efficacy of

  19. A population-based study of the quality of life of cancer survivors and their family caregivers.

    Science.gov (United States)

    Mellon, Suzanne; Northouse, Laurel L; Weiss, Linda K

    2006-01-01

    Although survival rates for all cancers continue to increase, few studies have examined the quality of life of both cancer survivors and family caregivers during the survivorship period after treatment has ended. Information is lacking on the stressors, resources, meaning, and quality of life reported by survivors and family caregivers and the interrelationship between survivors' and family caregivers' quality of life. A stratified, random sample of 123 cancer survivors and 123 family caregivers (N = 246) were interviewed in an exploratory, cross-sectional design 1-6 years after cancer treatment had ended. Approximately half (N = 62) of the dyads were white and half (N = 61) were African American. Results indicated that cancer survivors reported significantly higher quality of life, less fear of cancer recurrence, and more support than their family caregivers. The strongest predictors for cancer survivors' quality of life were family stressors, social support, meaning of the illness, and employment status, whereas the strongest predictors for family caregivers' quality of life were fear of recurrence and social support. Both the survivor's and family caregiver's quality of life independently contributed to the other's quality of life. Findings from this study suggest the importance of including both survivors and family caregivers in programs of care.

  20. The relationship between socio-demographic characteristics, family environment, and caregiver coping in families of children with cancer.

    Science.gov (United States)

    Gage-Bouchard, Elizabeth A; Devine, Katie A; Heckler, Charles E

    2013-12-01

    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.

  1. Perceived stress and resilience in Alzheimer's disease caregivers: testing moderation and mediation models of social support.

    Science.gov (United States)

    Wilks, Scott E; Croom, Beth

    2008-05-01

    The study examined whether social support functioned as a protective, resilience factor among Alzheimer's disease (AD) caregivers. Moderation and mediation models were used to test social support amid stress and resilience. A cross-sectional analysis of self-reported data was conducted. Measures of demographics, perceived stress, family support, friend support, overall social support, and resilience were administered to caregiver attendees (N=229) of two AD caregiver conferences. Hierarchical regression analysis showed the compounded impact of predictors on resilience. Odds ratios generated probability of high resilience given high stress and social supports. Social support moderation and mediation were tested via distinct series of regression equations. Path analyses illustrated effects on the models for significant moderation and/or mediation. Stress negatively influenced and accounted for most variation in resilience. Social support positively influenced resilience, and caregivers with high family support had the highest probability of elevated resilience. Moderation was observed among all support factors. No social support fulfilled the complete mediation criteria. Evidence of social support as a protective, moderating factor yields implications for health care practitioners who deliver services to assist AD caregivers, particularly the promotion of identification and utilization of supportive familial and peer relations.

  2. Hospital Discharge Planning: A Guide for Families and Caregivers

    Science.gov (United States)

    ... FCA - A A + A You are here Home Hospital Discharge Planning: A Guide for Families and Caregivers ... publication Printer-friendly version A trip to the hospital can be an intimidating event for patients and ...

  3. Family caregiver recruitment via social media: challenges, opportunities and lessons.

    Science.gov (United States)

    Hansen, Dana; Sheehan, Denice K; Stephenson, Pam

    2017-02-02

    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.

  4. Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors.

    Science.gov (United States)

    Bakas, Tamilyn; Burgener, Sandy C

    2002-01-01

    Predictors of emotional distress, general health, and stroke-related caregiving outcomes were determined in 104 family caregivers of stroke survivors based on a conceptual model derived from Lazarus' theory of stress and coping. Predictors of emotional distress (R(2) =.48, p <.001) were low caregiver self-esteem, high task difficulty, and high threat appraisal. Predictors of poorer health (R(2) =.25, p <.001) were not living with the patient, low household income, and high threat appraisal. Predictors of poor stroke-related care-giving outcomes (R(2) =.45, p <.001) were emotional distress, low benefit appraisal, high task difficulty, and high threat appraisal. Findings suggest potential areas for multidimensional caregiver interventions.

  5. Nurses as family caregivers - barriers and enablers facing nurses caring for children, parents or both.

    Science.gov (United States)

    Clendon, Jill; Walker, Léonie

    2017-03-01

    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.

  6. The influence of day care centres designed for people with dementia on family caregivers - a qualitative study.

    Science.gov (United States)

    Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork

    2017-01-05

    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

  7. Reintegration of Women Post Obstetric Fistula Repair: Experience of Family Caregivers.

    Science.gov (United States)

    Jarvis, Kimberly; Richter, Solina; Vallianatos, Helen; Thornton, Lois

    2017-01-01

    In northern Ghana, families traditionally function as the main provider of care. The role of family, however, is becoming increasingly challenged with the social shifts in Ghanaian culture moving from extended kinship to nuclear households. This has implications for the care of women post obstetric fistula (OF) repair and their family members who assist them to integrate back into their lives prior to developing the condition. This research is part of a larger critical ethnographic study which explores a culture of reintegration. For this article, we draw attention to the findings related to the experience of family caregivers who care for women post OF repair in northern Ghana. It is suggested that although family caregivers are pleased to have their family member return home, there are many unanticipated physical, emotional, and economic challenges. Findings lead to recommendations for enhancing the reintegration process and the need for adequate caregiving support.

  8. The ACTive Intervention in Hospice Interdisciplinary Team Meetings: Exploring family caregiver and hospice team communication.

    Science.gov (United States)

    Wittenberg-Lyles, Elaine; Parker Oliver, Debra; Demiris, George; Baldwin, Paula

    2010-04-01

    This paper presents the theoretical framework and rationale for the ACTive intervention which proposes the use of video technology to facilitate patient and family participation in hospice interdisciplinary team meetings where plans of care are determined. It is surmised that patient and family involvement will improve communication and compliance in hospice care. An analysis of data from a pilot project of the ACTive intervention was conducted to explore active participation among family caregivers and the hospice team. Through the use of videophone technology caregivers participated in video-recorded team meetings. The actual communication behaviors of caregivers and team members were analyzed for active participation. Findings revealed that team-prompted caregiver participation was most common, however, team use of supportive talk in this context was considerably less frequent. The study also found that the team's use of active participation behaviors elicits caregiver active participation behaviors. The results of this study suggest the intervention was an effective way to involve family caregivers as active participants in the designing of care for their loved one. Findings also suggest that hospice staff would benefit from education and training on best practices for communicating with caregivers in the team meeting setting.

  9. Putting theory to the test: examining family context, caregiver motivation, and conflict in the Family Check-Up model.

    Science.gov (United States)

    Fosco, Gregory M; Van Ryzin, Mark; Stormshak, Elizabeth A; Dishion, Thomas J

    2014-05-01

    This study examined contextual factors (caregiver depression, family resources, ethnicity, and initial levels of youth problem behavior) related to the effectiveness of the Family Check-Up (FCU) and evaluated family processes as a mediator of FCU intervention response and adolescent antisocial behavior. We followed a sample of 180 ethnically diverse youths of families who engaged in the FCU intervention. Family data were collected as part of the FCU assessment, and youth data were collected over 4 years, from sixth through ninth grade. Findings indicated that caregiver depression and minority status predicted greater caregiver motivation to change. In turn, caregiver motivation was the only direct predictor of FCU intervention response during a 1-year period. Growth in family conflict from sixth through eighth grade mediated the link between FCU response and ninth-grade antisocial behavior. This study explicitly tested core aspects of the FCU intervention model and demonstrated that caregiver motivation is a central factor that underlies family response to the FCU. The study also provided support for continued examination of family process mechanisms that account for enduring effects of the FCU and other family-centered interventions.

  10. The willingness to pay of elderly people's family caregivers for social support services%老年人家庭照顾者对社会支持性服务支付意愿的研究

    Institute of Scientific and Technical Information of China (English)

    曾莉; 万霞; 周兰姝

    2012-01-01

    Objective: To investigate the willingness to pay of elderly people's family caregivers for social support services and how much they could afford. Methods: We investigated 277 family caregivers of seniors by Contingent Valuation Method (CVM). Results: ① Willing to pay or not: 190 (68.6%) caregivers had willingness to pay for the general support service. Caregivers' willingness to pay for different services was different, too. The top five items were rehabilitation service (182, 65.7%), patient referral service (178,64.3%), community meal delivery service (177, 61.7%), modifying safe environment of home setting (167,60.2%),assistance of daily life activities, such as bathing, dressing, eating, toileting, etc.(166,59.9%). ② How much they want to pay: The amount they want to pay was different, but was low in general. They just wanted to pay 600-800 RMB per month for general service. Conclusion: The attitude of family caregiver to social support services is positive and they may have different willingness to pay for different services. It suggested that health care providers should carry out caregiver support services which could meet their urgent needs.%目的:了解老年人家庭照顾者是否愿意支付照顾者社会支持性服务的费用;了解照顾者对社会支持性服务愿意支付费用的具体金额.方法:用条件价值评估法调查了277名老年人家庭照顾者.结果:①是否愿意支付:对总体支持服务有支付意愿的照顾者共190人(68.6%);愿意支付费用的照顾者对具体支持服务项目的支付意愿不同,按照人数从高到低顺序排在前5位的有:康复训练182人(65.7%)、就诊转诊178人(64.3%)、社区送餐171人(61.7%)、家居安全环境改造167人(60.2%)、日常生活活动(沐浴、穿衣、进餐、如厕等)166人(59.9%).②具体支付金额:照顾者对社会支持性服务愿意支付不同程度的金额,总体来说,愿意支付的金额偏低,对总体支

  11. Social Networking Family of Caregivers during Hospitalization of Children.

    Science.gov (United States)

    Menezes, Marina; Moré, Carmen Leontina Ojeda Ocampo; Barros, Luísa

    2016-06-01

    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

  12. Review: Burden on Family Caregivers Caring for Patients with Schizophrenia and Its Related Factors

    Directory of Open Access Journals (Sweden)

    Imas Rafiyah

    2011-01-01

    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.

  13. Benefits of a poetry writing intervention for family caregivers of elders with dementia.

    Science.gov (United States)

    Kidd, Lori I; Zauszniewski, Jaclene A; Morris, Diana L

    2011-01-01

    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.

  14. The Relationship between Socio-demographic Characteristics, Family Environment, and Caregiver Coping in Families of Children with Cancer

    Science.gov (United States)

    Devine, Katie A.; Heckler, Charles E.

    2013-01-01

    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. PMID:23670676

  15. Coping with physical and psychological symptoms: a qualitative study of advanced lung cancer patients and their family caregivers.

    Science.gov (United States)

    Mosher, Catherine E; Ott, Mary A; Hanna, Nasser; Jalal, Shadia I; Champion, Victoria L

    2015-07-01

    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.

  16. Family Caregivers in Cancer: Roles and Challenges (PDQ®)—Health Professional Version

    Science.gov (United States)

    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.

  17. Family Caregivers in Cancer: Roles and Challenges (PDQ®)—Health Professional Version

    Science.gov (United States)

    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.

  18. Needs of family caregivers in home care for older adults.

    Science.gov (United States)

    Bierhals, Carla Cristiane Becker Kottwitz; Santos, Naiana Oliveira Dos; Fengler, Fernanda Laís; Raubustt, Kamila Dellamora; Forbes, Dorothy Anne; Paskulin, Lisiane Manganelli Girardi

    2017-04-06

    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

  19. Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in Thailand.

    Science.gov (United States)

    Oupra, R; Griffiths, R; Pryor, J; Mott, S

    2010-01-01

    In Thailand, the crude death rate from stroke is 10.9/100,000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life.

  20. Home Enteral Nutrition therapy: Difficulties, satisfactions and support needs of caregivers assisting older patients.

    Science.gov (United States)

    Jukic P, Nikolina; Gagliardi, Cristina; Fagnani, Donata; Venturini, Claudia; Orlandoni, Paolo

    2017-08-01

    The purpose of this study was to comprehend and describe the views, experiences and adaptations of caregivers who assist older patients treated with Home Enteral Nutrition. The objective was to gather empirical evidence to improve the delivery of Home Enteral Nutrition for old patients taking into account the caregivers' support needs. A qualitative methodology with focus groups as data collection method was used to collect the testimonies of 30 informal and formal caregivers of older patients treated with Home Enteral Nutrition by the Clinical Nutrition Service of INRCA (Ancona) during 2014. Quantitative methodology was used to collect socio-demographic data. Partially modified Silver's "Home Enteral Nutrition Caregiver Task Checklist" was used to identify training needs. The constant comparison method was used to code and categorize data and to develop themes of focus groups. Simple descriptive statistics were used to summarize questionnaires. Five main themes were identified from focus groups: acceptance of the therapy, skill acquisition process, need for psychological and practical support at home from healthcare professionals, lifestyle adaptation, affirmation of life and family. All caregivers testified the initial fear and refusal to manage the nutrition pump and the therapy. They expressed the need to be trained gradually, starting during a patient's hospitalization, and continuing in the community. With reference to their overall QoL, it emerged that informal caregivers suffered mostly from the reduction of their free time while formal caregivers suffered social isolation and psychological burden. For both groups the monthly home visit was the most important element of the HEN service. Informal caregivers highlighted the importance of having their loved ones at home. Unsatisfied training needs were identified by the modified Silver's "Home Enteral Nutrition Caregiver Task Checklist". This qualitative study underlined the challenges and adaptations of

  1. Caring for family members with chronic physical illness: A critical review of caregiver literature

    Directory of Open Access Journals (Sweden)

    Zebrack Brad

    2004-09-01

    Full Text Available Abstract This article reviews 19 studies (1987–2004 on quality of life for family caregivers helping those with chronic physical illness. Here we explore the concepts of and instruments used to measure caregivers' quality of life. We were particularly interested in understanding stress-related variables and documenting factors influencing quality of life based on family stress theory. Findings show that various positive and negative terms equated with quality of life were used to measure them. Results indicate that stress-related variables as possible predictors influencing caregivers' quality of life include: patient and caregiver characteristics, stressors, stress appraisal, stress coping methods, and social support. Our recommendations touch upon applying theory for intervention, developing measurement, making operable the concepts for measuring, and the need for longitudinal and comprehensive study.

  2. Relationships between nurses and family caregivers: partners in care?

    Science.gov (United States)

    Ward-Griffin, C; McKeever, P

    2000-03-01

    Increasing reliance on family care of elderly people at home calls for a critical analysis of the relationship between formal and informal caregivers. Although much has been written about how health professionals and family caregivers should relate to one another, we know very little about the relationships that develop between them. Using data from a qualitative study, this article illustrates that relationships between community nurses and family members caring for frail elders are complex, dynamic, and multifaceted. Shifting boundaries in caring work leads to changes in nurse-family caregiver relationships, which can be categorized as four distinct, yet interconnected, types: (1) nurse-helper, (2) worker-worker, (3) manager-worker, and (4) nurse-patient. Each type is described, and implications for nursing practice and research are discussed.

  3. Family caregivers' views on coordination of care in Huntington's disease

    DEFF Research Database (Denmark)

    Røthing, Merete; Malterud, Kirsti; Frich, Jan C

    2015-01-01

    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...

  4. Information needs of family caregivers regarding liver transplant candidates.

    Science.gov (United States)

    Sá, Amanda Silva; Ziviani, Luciana Costa; Castro-E-Silva, Orlando; Galvão, Cristina Maria; Mendes, Karina Dal Sasso

    2016-03-01

    Objective To assess the information needs of family caregivers of candidates on the waiting list for a liver transplant. Methods It is a cross-sectional study conducted in a transplant center in São Paulo State in the period between April and October of 2012. For the assessment of information needed, an instrument submitted to face and content value was used. The caregivers put 10 subjects in order according to their importance and the amount of interest they had in learning about each, prior to the transplant their family member would be subjected to. Sociodemographic characteristics were also recorded. For data analysis, descriptive statistics were used. Results 42 families participated in the study. The information need about liver disease complications, complications after transplantation and care needed after surgery had higher averages. Conclusions Knowing the information needs of caregivers is important to plan teaching-learning strategies aimed at improving assistance to patients and families in transplant programs.

  5. Determinants of hopelessness and depression among Chinese hospitalized esophageal cancer patients and their family caregivers.

    Science.gov (United States)

    Han, Yanhong; Yuan, Jie; Luo, Zhiguo; Zhao, Jing; Wu, Junbo; Liu, Rongying; Lopez, Violeta

    2013-11-01

    It has been well documented that the diagnosis of cancer is psychologically devastating to both the patients and caregivers. The incidence and mortality of esophageal cancer were 20.85 and 16.24 per 100,000 persons and the sixth most commonly diagnosed cancer and the fourth main cause of cancer death in China. We surveyed patients-caregivers dyad and examined the determinants of their depression and hopelessness. The prevalence of depression among patients and caregivers was 52.8% and 47.2%, and the prevalence for hopelessness was 64.4% and 53.9%, respectively Regression models indicate that the variables measured could explain 58.9% and 51.7% of the variance in depression and 66.8% and 45.7% of the variance in hopelessness among patients and caregivers, respectively. Overall, hopelessness was a determinant of depression and vice versa to both patients and caregivers. Esophageal patients' depression and hopelessness could also affect caregivers' depression and hopelessness despite the social support that family caregivers have. Psychosocial interventions should be planned to both Chinese patients and caregivers considering the predictors found in this study. Copyright © 2013 John Wiley & Sons, Ltd.

  6. MSUD Family Support Group

    Science.gov (United States)

    ... Group The MSUD Family Support Group is a non-profit 501 (c)(3) organization for those with MSUD ... Family Support Group is a 501(c)(3) non-profit organization with no paid staff. Funds are needed ...

  7. Profile and social features concerning family caregivers in a traumatology and rehabilitation hospital

    Directory of Open Access Journals (Sweden)

    Aurora Quero Rufián

    2004-10-01

    Full Text Available Studies on family care giving within hospitals are not frequent. This situation contributes to make these people underconsidered by the health system. The aim of this study is to analyze the profile of family caregivers, the needs they attend and how they are considered by the health professionals in a traumatology and rehabilitation hospital.Methodology: Descriptive and cross-sectional study, which included one hundred interviews performed between September and October 2002 in traumatology, maxillofacial surgery, neurology, and neurosurgery wards. Results: The family caregiver profile corresponds to a female with a median age of 48 years who spends a mean of 20 hours per day in the hospital. Surveillance and company were the main contributions to the patient care according to caregivers’ answers. Conclusions: Wives or mothers become the main family caregivers. Their contribution implies monetary and time costs as well as physic, psychological and social impact. The care offered by the family caregivers is scarcely supported by professional help. Increasing the professionals’ recognition of the family caregivers is a social requirement.

  8. Linking theory with qualitative research through study of stroke caregiving families.

    Science.gov (United States)

    Pierce, Linda L; Steiner, Victoria; Cervantez Thompson, Teresa L; Friedemann, Marie-Luise

    2014-01-01

    This theoretical article outlines the deliberate process of applying a qualitative data analysis method rooted in Friedemann's Framework of Systemic Organization through the study of a web-based education and support intervention for stroke caregiving families. Directed by Friedemann's framework, the analytic method involved developing, refining, and using a coding rubric to explore interactive patterns between caregivers and care recipients from this 3-month feasibility study using this education and support intervention. Specifically, data were gathered from the intervention's web-based discussion component between caregivers and the nurse specialist, as well as from telephone caregiver interviews. A theoretical framework guided the process of developing and refining this coding rubric for the purpose of organizing data; but, more importantly, guided the investigators' thought processes, allowing them to extract rich information from the data set, as well as synthesize this information to generate a broad understanding of the caring situation. © 2013 Association of Rehabilitation Nurses.

  9. Needs of family caregivers of advanced cancer patients: a survey in Shanghai of China.

    Science.gov (United States)

    Cui, J; Song, L J; Zhou, L J; Meng, H; Zhao, J J

    2014-07-01

    It is important to understand the unmet needs of family caregivers of advanced cancer patients for developing and refining services to address the identified gaps in cancer care. To explore their needs in Chinese mainland and the possible factors associated with their needs, a self-developed questionnaire was used to survey a sample of 649 participants in 15 hospitals of Shanghai. The data were analysed using descriptive statistics, factor analysis, t-test, one-way ANOVA, and Fishers least significant difference t-test. All statistical analyses were performed using SPSS 13.0. Seven dimensions of needs (maintaining health, support from healthcare professionals, knowledge about the disease and treatment, support on funeral, information on hospice care, psychological support for patients and symptoms control for patients) were extracted from the results by factor analysis. The dimension with the highest score was 'knowledge about the disease and treatment' (4.37), and that with the lowest score named 'support on funeral' (2.85). The results showed that the factors including burden of payment for treatment, former caregiving experience of family caregivers and length of caregiving time were associated with their needs. Cancer services need to consider how to tailor resources and interventions to meet these needs of family caregivers of advanced cancer patients.

  10. Question asking by family caregivers in hospice interdisciplinary team meetings.

    Science.gov (United States)

    Wittenberg-Lyles, Elaine; Oliver, Debra Parker; Demiris, George; Washington, Karla T; Regehr, Kelly; Wilder, Heidi M

    2010-04-01

    This article reports findings from a pilot study that enabled family caregivers to use videophone technology to participate in hospice interdisciplinary team meetings. The goal of the study was to ascertain which issues were important to caregivers and the hospice team. A qualitative content analysis of video-recorded team meetings between team members and caregivers was conducted. In a sample of 12 caregivers in 36 discussions, caregivers asked a total of 137 questions, with the majority being Yes/No questions (45.1%), primarily used to seek clarification (19.6%). Hospice staff asked 396 questions, with the majority consisting of Yes/No questions (66.5%), mainly used to ask about the overall condition of the patient (22.2%). Data from this study suggest that when given the opportunity to participate in hospice team meetings, caregivers will ask questions of hospice staff. In addition, in light of prior research, this study's findings suggest that caregivers may have questions that go unaddressed, specifically regarding pain and medication.

  11. Needs of family caregivers of stroke patients: a longitudinal study of caregivers’ perspectives

    Directory of Open Access Journals (Sweden)

    Tsai PC

    2015-03-01

    Full Text Available Pei-Chun Tsai,1 Ping-Keung Yip,2 John Jen Tai,3 Meei-Fang Lou11School of Nursing, College of Medicine, National Taiwan University, Taipei, 2School of Medicine, 3Department of Statistics and Information Science, College of Management, Fu-Jen Catholic University, New Taipei City, TaiwanBackground: After a stroke, patients often suffer from varying degrees of disability that require acute inpatient treatment and extended care at home. Therefore, the caregivers assume multiple responsibilities that can result in stress, particularly when their own needs are inadequately addressed during the patient’s recovery.Objectives: This study aimed to explore the changing needs of family caregivers of stroke patients and factors related to the needs in four stages, before the transfer from intensive care unit to neurological unit, before discharge, 2 weeks post-hospitalization, and 3 months post-hospitalization.Methods: The design of this study was based on longitudinal research, and the participants were family caregivers of stroke patients. Sixty family caregivers were recruited in this study. Data were collected at four time points by questionnaire.Results: We found that the total number of needs of family caregivers decreased as the illness duration increased and that needs differed significantly between the four time points (P<0.01. Although the needs were different in each stage, health information, professional support, and community networks were the leading need domains in all four stages. The major factors affecting the care needs of family caregivers were the National Institutes of Health Stroke Scale scores of patients on admission, length of hospital stay, and physical dependence of patients.Conclusion: Family caregivers expected to obtain assistance and related care information from professionals during the course of the disease. Assessing the needs of family caregivers is important for health care workers in understanding problems from the

  12. Stress and social support in caregivers of children with cerebral palsy

    Directory of Open Access Journals (Sweden)

    Alyne Kalyane Câmara de Oliveira

    2013-12-01

    Full Text Available In this study, we aimed to describe the levels of stress and perceived social support for caregivers of children with cerebral palsy (CP, as well as investigate the relationship between stress, social support, and variables related to caregivers, the environment and children, namely: the number of children, education level of caregivers, family income, behavior, and the child’s motor level. This study comprised 50 children with CP between 3 and 7.5 years old, their 50 caregivers, and 25 rehabilitation professionals who care for children in health institutions from the countryside of São Paulo state, Brazil. The following measuring instruments were used: the Gross Motor Function Classification System for Cerebral Palsy, the Lipp’s Inventory of Stress Symptoms in Adults, the Social Support Questionnaire, and a form identifying the participants. Data were analyzed using descriptive and inferential statistics by the following tests: Chi-square, Fisher exact, Mann-Whitney, Kruskal-Wallis, and Odds Ratio. The results showed stress among the participating caregivers (66%, with predominance of the resistance phase (93.9% and psychological symptoms (69.7%, low perceived social support for caregivers, concomitant with an adequate satisfaction with the support received, as well as significant relationships of stress versus social support (p = 0.017 and education level versus social support (p = 0.037. The data allow analysis of the relationship between the variables investigated and about the impact of having a child with CP in the family regarding the physical, emotional and psychological well-being of caregivers, besides providing subsidies to think of strategies at different levels of care for families of children with disabilities.

  13. Wearable Technology to Garner the Perspective of Dementia Family Caregivers.

    Science.gov (United States)

    Matthews, Judith T; Campbell, Grace B; Hunsaker, Amanda E; Klinger, Julie; Mecca, Laurel Person; Hu, Lu; Hostein, Sally; Lingler, Jennifer H

    2016-04-01

    Family caregivers of individuals with dementia typically have limited opportunity during brief clinical encounters to describe the dementia-related behaviors and interactions they find difficult to handle. Lack of objective data depicting the nature, intensity, and impact of these manifestations of the underlying disease further constrains the extent to which strategies recommended by nurses or other health care providers can be tailored to the situation. The current article describes a prototype wearable camera system used to gather image and voice data from the caregiver's perspective in a pilot feasibility intervention study conducted with 18 caregiving dyads. Several scenarios are presented that include salient events (i.e., behaviors or interactions deemed difficult by the caregiver or identified as concerning by the research team during screening) captured in the resulting video. The current authors anticipate future wearable camera systems and software will automate screening for salient events, providing new tools for assessment and intervention by nurses.

  14. Does a family meetings intervention prevent depression and anxiety in family caregivers of dementia patients? A randomized trial.

    Directory of Open Access Journals (Sweden)

    Karlijn J Joling

    Full Text Available BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine

  15. Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

    NARCIS (Netherlands)

    Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H.M. van

    2012-01-01

    OBJECTIVE: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. METHODS: A qualitative study, 13 caregivers participated in semi-structured interviews. RESULTS: Professional caregiver support in

  16. Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

    NARCIS (Netherlands)

    Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H. van

    2012-01-01

    Objective: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. Methods: A qualitative study, 13 caregivers participated in semi-structured interviews. Results: Professional caregiver support in

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

    Science.gov (United States)

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

    2017-06-01

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

  18. Influence of social support, depression, and self-esteem on burden of care among caregivers of oncology patients.

    Science.gov (United States)

    Adejumo, Adebayo

    2009-01-01

    This study investigated the influence of social support, depression and self esteem on the burden of care among informal caregivers of oncology patients. The cross-sectional correlational study included 278 informal oncology caregivers. Results showed a significant main effect of self-esteem (F(1277) = 5.35, p improving the psychological well-being of informal caregivers of oncology patients in the expanding role of family and community members in caring for cancer patients.

  19. Correlates of Caregiver Burden among Family Members of Patients with Schizophrenia in Lagos, Nigeria

    Directory of Open Access Journals (Sweden)

    Increase Ibukun Adeosun

    2013-01-01

    Full Text Available Family members of patients with schizophrenia have enormous roles in the care of their patients, which could negatively impact their well being. Development of interventions targeted at alleviating the burden of informal care giving is hinged on the recognition of the factors associated with the various dimensions of burden. This study determined the correlates of caregiver burden among family members of patients with schizophrenia in Lagos, Nigeria. The study instruments included the Zarit burden interview (ZBI and the positive and negative syndrome scale for schizophrenia (PANSS. Exploratory factor analysis of the ZBI produced a five-factor structure with “financial/physical strain”, “time/dependence strain”, “emotional strain”, “uncertainty”, and “self-criticism” domains. On multiple regression analyses, total PANSS scores, poor social support, and lower educational levels of caregivers were predictive of higher burden scores on the “financial/physical strain”, “time/dependence”, and “emotional strain” domains. Longer duration of illness, shorter patient-caregiver contact time, and being a female caregiver were predictive of higher burden scores on the “uncertainty”, “self-criticism”, and “emotional strain” domains, respectively. There is need for interventions to alleviate the burden on caregivers of patients with schizophrenia in Nigeria. These strategies must include comprehensive social support and improve access to services for patients and their caregivers.

  20. Correlates of Caregiver Burden among Family Members of Patients with Schizophrenia in Lagos, Nigeria.

    Science.gov (United States)

    Adeosun, Increase Ibukun

    2013-01-01

    Family members of patients with schizophrenia have enormous roles in the care of their patients, which could negatively impact their well being. Development of interventions targeted at alleviating the burden of informal care giving is hinged on the recognition of the factors associated with the various dimensions of burden. This study determined the correlates of caregiver burden among family members of patients with schizophrenia in Lagos, Nigeria. The study instruments included the Zarit burden interview (ZBI) and the positive and negative syndrome scale for schizophrenia (PANSS). Exploratory factor analysis of the ZBI produced a five-factor structure with "financial/physical strain", "time/dependence strain", "emotional strain", "uncertainty", and "self-criticism" domains. On multiple regression analyses, total PANSS scores, poor social support, and lower educational levels of caregivers were predictive of higher burden scores on the "financial/physical strain", "time/dependence", and "emotional strain" domains. Longer duration of illness, shorter patient-caregiver contact time, and being a female caregiver were predictive of higher burden scores on the "uncertainty", "self-criticism", and "emotional strain" domains, respectively. There is need for interventions to alleviate the burden on caregivers of patients with schizophrenia in Nigeria. These strategies must include comprehensive social support and improve access to services for patients and their caregivers.

  1. [Problems in the process of adapting to change among the family caregivers of elderly people with dementia].

    Science.gov (United States)

    Moreno-Cámara, Sara; Palomino-Moral, Pedro Ángel; Moral-Fernández, Lourdes; Frías-Osuna, Antonio; Del-Pino-Casado, Rafael

    2016-01-01

    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.

  2. The contribution of practice skills in a care management process for family caregivers.

    Science.gov (United States)

    Rowe, Jeannine M; Rizzo, Victoria M

    2013-01-01

    Practice skills are believed to improve practice, yet, little is known about the extent to which skills affect outcomes. This exploratory study examined the extent to which 3 practice skills specific to a care management context for family caregivers, including communication skills, supportive skills, and linking skills, were associated with fidelity of a care management process. Twenty-one care managers who used a single process to serve 113 family caregivers were included in the study. Bivariate correlation analysis revealed the 3 practice skills are positively associated with process fidelity. Implications for social work practice, education, and research are discussed.

  3. The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a systematic review

    DEFF Research Database (Denmark)

    Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard;

    2015-01-01

    BACKGROUND Informal caregivers who perform at-home care of older people with dementia might have feelings of a meaningless existence, burden, anxiety, stress and fatigue. Support groups are considered an especially effective and economical way to relieve informal caregivers’ stress and burden...... of participants: Informal caregivers of older adults aged 65 years and over with dementia. The informal caregiver was a family member, and care was performed at home. Phenomena of interest: How the informal caregivers perceived the meaningfulness of participating in support groups. The setting was all locations...

  4. Supporting Caregivers in Developing Responsive Communication Partnerships with Their Children: Extending a Caregiver-Led Interactive Language Program

    Science.gov (United States)

    Cologon, Kathy; Wicks, Lilly; Salvador, Aliza

    2017-01-01

    This study investigates whether extension of a caregiver-led interactive language program may enhance its effectiveness in supporting communication. Caregiver-led language programs, which focus on establishing responsive interaction patterns to support opportunities for communication between caregivers and young children within natural settings,…

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

    Directory of Open Access Journals (Sweden)

    Yi Eng J

    2011-06-01

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

  6. [Ebola crisis in Guinea: psychosocial support for patients and caregivers].

    Science.gov (United States)

    Benifei, Sarah; Facon-Delahaye, Aline; Vautier, Virginie

    2016-02-01

    The experience of the French military health service in the fight against the Ebola epidemic in Guinea, highlights the importance of what favours the emergence of an institutional life in a context of care faced with numerous constraints and extraordinary challenges. The meticulous drawing up of procedures and the juxtaposition of expertise goes hand in hand with the construction of a triangular care system (caregivers-patients-families). This relational approach ensures each player in this system is able to find their place and a balance between constraints and satisfactions, losses and successes, isolation and support. This balance seems to favour individual and group resilience. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  7. The role of attitudes and culture in family caregiving for older adults.

    Science.gov (United States)

    Anngela-Cole, Linda; Hilton, Jeanne M

    2009-01-01

    This study evaluated cultural differences in attitudes toward caregiving and the stress levels of family caregivers. Participants included 98 Japanese American and 86 Caucasian American family caregivers caring for frail elders. Analyses using MANOVA and multiple regression analyses revealed that the Caucasian caregivers had more positive attitudes and provided more hours of care than the Japanese caregivers but that both groups had elevated levels of caregiver stress. The stress that family caregivers currently experience could lead to a future generation of care recipients who enter old age in worse condition than their predecessors. Professionals need to work together to develop culturally appropriate, evidence-based interventions to address this issue.

  8. Social network of family caregivers of disabled and dependent patients.

    Science.gov (United States)

    Yamashita, Cintia Hitomi; Gaspar, Jaqueline Correia; Amendola, Fernanda; Alvarenga, Márcia Regina Martins; Oliveira, Maria Amélia de Campos

    2014-08-01

    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 paverage 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.

  9. Family caregivers coping with terminality during home care

    Directory of Open Access Journals (Sweden)

    Stefanie Griebeler Oliveira

    2013-07-01

    Full Text Available This study aimed to know how family caregivers cope with the finitude of their close relative in home care. This is a qualitative study, involving 11 caregivers of terminally ill patients, registered in a home care service of a university hospital in the South of Brazil, conducted in the period from January to June 2010. Data collection occurred through narrative interviews which were recorded and transcribed to be analyzed through content analysis. Two categories emerged from data analysis: “feelings involved in terminally ill patients home care” and “repercussions of human finitude in the caregiver’s life”, which made clear the complexity of home care of patients without possibilities of cure and the sufferings incurred by this situation to the family caregivers that are responsible for a caring of this nature.

  10. Social network of family caregivers of disabled and dependent patients

    Directory of Open Access Journals (Sweden)

    Cintia Hitomi Yamashita

    2014-08-01

    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.

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

    Directory of Open Access Journals (Sweden)

    Nagatsuka Miwa

    2008-10-01

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

  12. Personhood-Based Dementia Care: Using the Familial Caregiver as a Bridging Model for Professional Caregivers

    Directory of Open Access Journals (Sweden)

    Michael Gabriel Fetterolf

    2015-05-01

    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.

  13. A pilot study of the experience of family caregivers of patients with advanced pancreatic cancer using a mixed methods approach

    National Research Council Canada - National Science Library

    Sherman, Deborah W; McGuire, Deborah B; Free, David; Cheon, Joo Young

    2014-01-01

    .... Understanding the negative and positive aspects of caregiving for patients with advanced pancreatic cancer will inform interventions that promote positive caregiver outcomes and support caregivers in their role...

  14. Multiple Family Groups for Child Behavior Difficulties Retention Among Child Welfare-Involved Caregivers.

    Science.gov (United States)

    Gopalan, Geetha; Fuss, Ashley; Wisdom, Jennifer P

    2015-09-01

    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.

  15. Multiple Family Groups for Child Behavior Difficulties Retention Among Child Welfare–Involved Caregivers

    Science.gov (United States)

    Gopalan, Geetha; Fuss, Ashley; Wisdom, Jennifer P.

    2013-01-01

    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. Methods 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. Results 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. Conclusions High acceptability suggest utility for implementing MFGs within settings serving child welfare involved families, with additional modifications to tailor to setting and client features. PMID:26527856

  16. Influence of family dynamics on burden among family caregivers in aging Japan.

    Science.gov (United States)

    Kusaba, Tesshu; Sato, Kotaro; Fukuma, Shingo; Yamada, Yukari; Matsui, Yoshinori; Matsuda, Satoshi; Ando, Takashi; Sakushima, Ken; Fukuhara, Shunichi

    2016-10-01

    Long-term care for the elderly is largely shouldered by their family, representing a serious burden in a hyper-aging society. However, although family dynamics are known to play an important role in such care, the influence of caring for the elderly on burden among caregiving family members is poorly understood. To examine the influence of family dynamics on burden experienced by family caregivers. We conducted a cross-sectional study at six primary care clinics, involving 199 caregivers of adult care receivers who need long-term care. Participants were divided into three groups based on tertile of Index of Family Dynamics for Long-term Care (IF-Long score), where higher scores imply poorer relationships between care receivers and caregiving family: best, family dynamics strongly influences burden experienced by caregiving family members, regardless of the care receiver's degree of cognitive impairment. These results underscore the importance of evaluating relationships between care receivers and their caregivers when discussing a care regimen for care receivers. © The Author 2016. Published by Oxford University Press.

  17. Characteristics of the Family Caregivers Who Did Not Benefit From a Successful Psychoeducational Group Intervention During Palliative Cancer Care: A Prospective Correlational Study.

    Science.gov (United States)

    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.

  18. Perceived support in caregivers of patients legally dependent

    Directory of Open Access Journals (Sweden)

    Antonio M. Vázquez Merino

    2012-03-01

    Full Text Available The Spanish law of Promoting the Personal Autonomy and Attention to people in dependence situation (39/2006 recognizes the enjoyment of assistance to its beneficiaries. General Objective: Determinate the degree of perceived social support in caregivers of persons receiving benefits established by the law. Specific Objectives: To establish the socio-sanitary profile of patients and caregivers and to know, on the basis of the degree of dependency recognized, the features catalogue offered and chosen by our patients. Methodology: descriptive cross-sectional study. Study population: 98 patient-caregiver pairs belonging to Isla Chica’s Health Center (Huelva. Results: The patient profile was a polymedicated woman aged around 74 years old, mainly with self-care deficits and a physical mobility impairment. The caregiver profile was a woman aged around 58 years old, who was taking care of her mother for two years. She showed arterial hypertension, adaptation disorders and osteoarticular diseases. 67.4% of the caregivers receive little total support. Discussion: The physical and mental efforts these dependent caregivers are subjected to has a negative influence on the perception of social support, despite the benefits granted.

  19. When the private sphere goes public: exploring the issues facing family caregiver organizations in the development of long-term care policies.

    Science.gov (United States)

    Rozario, Philip A; Palley, Elizabeth

    2008-01-01

    Though family caregiving forms the backbone of the long-term care system in the United States, long-term care policies have traditionally focused on paid services that frail older people and people with disabilities utilize for their day-to-day functioning. Part of the exclusion of family caregiving from the long-term care discourse stems from the traditional separation of the private sphere, where family caregiving occurs, from the public sphere of policy making. However, the passage of the Family and Medical Leave Act (FMLA), the National Family Caregiver Support Program (NFCSP) and Medicaid waiver legislation may reflect recent changes in the government's position on their role in addressing issues related to the "private spheres." In this article, we explore the nature of family caregiving in the United States, the divide between the public and private spheres and provide an overview of family caregiving-related policies and programs in the U.S. In our review, we examine the provisions in the FMLA, NFCSP, and Medicaid waiver legislation that support family caregiving efforts. We also examine the roles of family caregiver organizations in making family caregiving an important element of long-term care policy and influencing policy-making.

  20. Spirituality and psychological well-being: testing a theory of family interdependence among family caregivers and their elders.

    Science.gov (United States)

    Kim, Suk-Sun; Reed, Pamela G; Hayward, R David; Kang, Youngmi; Koenig, Harold G

    2011-04-01

    The family spirituality-psychological well-being model was developed and tested to explore how spirituality influences psychological well-being among elders and caregivers in the context of Korean family caregiving. The sample consisted of 157 Korean elder-family caregiver dyads in Seoul, Korea. The intraclass correlation coefficient and the actor-partner interdependence statistical model were used to analyze the data. There were significant correlations between elders' and caregivers' spirituality and between elders' and caregivers' psychological well-being. Elders' and caregivers' spirituality significantly influenced their own psychological well-being. The caregiver's spirituality significantly influenced the elder's psychological well-being, but the elder's spirituality did not significantly influence the caregiver's psychological well-being. Findings suggest that elders' and caregivers' spirituality should be assessed within the family to provide holistic nursing interventions.

  1. A Tailored Web-Based Psycho-Educational Intervention for Cancer Patients and Their Family Caregivers

    Science.gov (United States)

    Northouse, Laurel; Schafenacker, Ann; Barr, Kathryn L.C.; Katapodi, Maria; Yoon, Hyojin; Brittain, Kelly; Song, Lixin; Ronis, David L.; An, Larry

    2014-01-01

    Background Most programs addressing psychosocial concerns of cancer survivors are in-person programs that are expensive to deliver, have limited availability, and seldom deal with caregivers’ concerns. Objective This study examined the feasibility of translating an efficacious nurse-delivered program (FOCUS Program) for patients and their caregivers to a tailored, dyadic web-based format. Specific aims were to: (i) test the preliminary effects of the web-based intervention on patient and caregiver outcomes, (ii) examine participants’ program satisfaction, and (iii) determine the feasibility of using a web-based delivery format. Intervention/Methods A Phase II feasibility study was conducted with cancer patients (lung, breast, colorectal, prostate) and their family caregivers (N=38 dyads). The web-based intervention provided information and support tailored to the unique characteristics of each patient, caregiver, and their dyadic relationship. Primary outcomes were emotional distress and quality of life (QOL). Secondary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included descriptive statistics and repeated measures ANOVA. Results Dyads had a significant decrease in emotional distress, increase in QOL, and perceived more benefits of illness/caregiving. Caregivers also had significant improvement in self-efficacy. There were no changes in communication. Participants were satisfied with program usability, but recommended additional content. Conclusions It was possible to translate a clinician-delivered program to a web-based format that was easy to use and had positive effects on dyadic outcomes. Implications for Practice The web-based program is a promising way to provide psychosocial care to more patients and caregivers using fewer personnel. It needs further testing in a larger RCT. PMID:24945270

  2. Families with Special Needs: Caregiving Tips

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    ... Be Safe on Halloween Be Smoke-Free Check Alarm Batteries Know Your Family History Keep Foods Safe ... Resources Autism Birth Defects Blood Disorders Cancer Chronic Fatigue Syndrome Diabetes and Children Epilepsy HIV/AIDS Intimate ...

  3. Influence of family dynamics on burden among family caregivers in aging Japan

    Science.gov (United States)

    Kusaba, Tesshu; Sato, Kotaro; Fukuma, Shingo; Yamada, Yukari; Matsui, Yoshinori; Matsuda, Satoshi; Ando, Takashi; Sakushima, Ken; Fukuhara, Shunichi

    2016-01-01

    Background. Long-term care for the elderly is largely shouldered by their family, representing a serious burden in a hyper-aging society. However, although family dynamics are known to play an important role in such care, the influence of caring for the elderly on burden among caregiving family members is poorly understood. Objective. To examine the influence of family dynamics on burden experienced by family caregivers. Methods. We conducted a cross-sectional study at six primary care clinics, involving 199 caregivers of adult care receivers who need long-term care. Participants were divided into three groups based on tertile of Index of Family Dynamics for Long-term Care (IF-Long score), where higher scores imply poorer relationships between care receivers and caregiving family: best, <2; intermediate, 2 to <5; worst, ≥5. The mean differences in burden index of caregivers (BIC-11) between the three groups were estimated by linear regression model with adjustment for care receiver’s activity of daily living and cognitive function. Results. Mean age of caregivers was 63.2 years (with 40.7% aged ≥ 65 years). BIC-11 scores were higher in the worst IF-Long group (adjusted mean difference: 4.4, 95% confidence interval: 1.2 to 7.5) than in the best IF-Long group. We also detected a positive trend between IF-Long score and BIC-11 score (P-value for trend <0.01). Conclusion. Our findings indicate that family dynamics strongly influences burden experienced by caregiving family members, regardless of the care receiver’s degree of cognitive impairment. These results underscore the importance of evaluating relationships between care receivers and their caregivers when discussing a care regimen for care receivers. PMID:27450988

  4. The Role of Nurses in Coping Process of Family Caregivers of Vegetative Patients: A Qualitative Study

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    Imanigoghary, Zahra; Peyrovi, Hamid; Nouhi, Esmat; Kazemi, Majid

    2017-01-01

    ABSTRACT Background: Vegetative state (VS) occurs through return of the brain stem after coma state. After hospital discharge, responsibility of caring for VS patients is transferred to their families, which causes a high burden on them. Nurses have an important role in helping the family caregivers to meet their needs and cope with difficulties. To explore the role of nurses during coping process of family caregivers of VS patients. Methods: This study is a part of a larger qualitative study which was performed in Kerman province, Iran during 2014- 2015. Purposive and theoretical sampling was used. 14 caregivers participated in the study. Data were gathered using face-to-face in-depth interviews and managed by MAXQDA 10 software. Analysis was done through constant Comparative Method. Results: Three themes of “nurse as a pursuer teacher”, “nurse as a compassionate caregiver”, and “nurse as a supporter” were derived from analysis that represent various roles of a nurse in the coping process of family caregivers of vegetative patients during the care process. Conclusion: Nurses can play an effective role in improving the caregivers’ well-being by considering the importance of training at discharge time and during home care, helping families in providing care and support them during care process. PMID:28097180

  5. The Role of Nurses in Coping Process of Family Caregivers of Vegetative Patients: A Qualitative Study

    Directory of Open Access Journals (Sweden)

    Zahra Imanigoghary

    2017-01-01

    Full Text Available Background: Vegetative state (VS occurs through return of the brain stem after coma state. After hospital discharge, responsibility of caring for VS patients is transferred to their families, which causes a high burden on them. Nurses have an important role in helping the family caregivers to meet their needs and cope with difficulties. To explore the role of nurses during coping process of family caregivers of VS patients. Methods: This study is a part of a larger qualitative study which was performed in Kerman province, Iran during 2014- 2015. Purposive and theoretical sampling was used. 14 caregivers participated in the study. Data were gathered using face-to-face in-depth interviews and managed by MAXQDA 10 software. Analysis was done through constant Comparative Method. Results: Three themes of “nurse as a pursuer teacher”, “nurse as a compassionate caregiver”, and “nurse as a supporter” were derived from analysis that represent various roles of a nurse in the coping process of family caregivers of vegetative patients during the care process. Conclusion: Nurses can play an effective role in improving the caregivers’ well-being by considering the importance of training at discharge time and during home care, helping families in providing care and support them during care process.

  6. Support Needs of Families Living with Children with Autism Spectrum Disorder

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    Searing, Billie Margaret Jean; Graham, Fiona; Grainger, Rebecca

    2015-01-01

    This study examined the perceived availability and helpfulness of supports used by caregivers of children with Autism Spectrum Disorder in New Zealand, particularly for caregivers who are Maori, and who live rurally. Caregivers (N = 92) completed the Family Support Scale with comparisons analysed using t tests. Free text comments were invited and…

  7. Family caregivers' sleep loss and depression over time.

    Science.gov (United States)

    Carter, Patricia A

    2003-08-01

    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.

  8. The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review

    Directory of Open Access Journals (Sweden)

    Maja Lopez Hartmann

    2012-08-01

    Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010. Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.

  9. The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review

    Directory of Open Access Journals (Sweden)

    Maja Lopez Hartmann

    2012-08-01

    Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly.Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010.Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability.Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.

  10. Caring for the caregiver: evaluation of support groups for guardians of orphans and vulnerable children in Kenya.

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    Thurman, Tonya R; Jarabi, Ben; Rice, Janet

    2012-01-01

    HIV and AIDS have altered the context in which millions of children in sub-Saharan Africa are raised. Many are under the care of a widowed or ill parent, and others are residing with their extended family. Caregivers of orphans and other vulnerable children (OVC) face a variety of stressors that may adversely affect children. This study explores potential benefits of caregivers' membership in support groups on their own psychosocial wellbeing, and on the treatment and psychosocial well-being of OVC aged 8-14 under their care. A post-test study design comparing members and non-members was applied, drawing upon random samples of current and prospective beneficiaries from a rural community in Kenya. With up to two children per caregiver eligible for study inclusion, the sample comprised 766 caregivers and 1028 children. Three-quarters of children had lost at least one parent. Nearly 90% were cared for by a female, often their natural mother or grandmother. Half of the caregivers were widowed and one-fifth had a chronic illness. Over one-third of caregivers were members of support groups, more commonly female caregivers. Regression analyses assessed the effect of support group membership after controlling for household, caregiver and child characteristics. Members reported less social marginalization, better family functioning and more positive feelings towards the children in their care than nonmembers. Children with caregivers in support groups exhibited fewer behavioral problems, higher rates of prosocial behavior and reported lower incidence of abuse from adults in their household. The psychological state of caregivers, however, was not associated with support group membership. Results underscore that quality care of vulnerable children hinges on interventions that address the psychosocial challenges facing their caregivers.

  11. [Psychiatric distress and related risk factors of family caregivers who care for the demented elderly at home].

    Science.gov (United States)

    Doi, Y; Ogata, K

    2000-01-01

    The objectives of our study were to assess psychiatric distress of caregivers who had been caring for the demented elderly at home and to examine the association of caregivers' psychiatric distress with putative risk factors. Subjects were 294 caregivers living in Amakusa, Kumamoto Prefecture of Japan, whose spouses, parents or other family members were registered at Amakusa Public Health Center as demented elderly. In 1998, Survey on Caregivers' Mental Health was conducted using the General Health Questionnaire (GHQ12) as a measurement for general psychiatric state of caregivers. Two hundred and eighty-two caregivers responded to interviews with complaints of the following psychological symptoms: feelings of unhappiness (55.7%), of stress (41.8%), insomnia (29.4%) and depressed mood (29.1%). Seventy-six caregivers (27.2%) were identified as being above the cut-off point 4 for psychiatric distress caseness. Multivariate logistic regression analysis indicated caregivers' psychiatric distress was statistically associated with caregivers' age, the caregivers' perception of the severity of dementia, the number of years devoted to caregiving at home and perceived financial state. Being 50 to 69 years (OR = 0.37, 95% CI: 0.17-0.81) and being 70 years or older (OR = 0.35, 95% CI: 0.14-0.83) were negatively associated with caseness as compared to being 20 to 49 years. Caseness was positively related to the severity of the elderly's demented state (OR = 6.93, 95% CI: 1.99-24.19), 1 year to 2 years devoted to caregiving at home (OR = 3.26, 95% CI: 1.02-10.38), no family or social support (OR = 2.99, 95% CI: 1.12-7.96) and lower perceived financial state (always OR = 6.99, 95% CI: 2.77-17.64, sometimes OR = 2.41, 95% CI: 1.19-4.85). Reduction of caregivers' psychiatric distress is important for not merely the enhancement of quality of care for demented elders and caregivers' life but for the prevention of elder abuse or neglect. Our study suggests that a comprehensive

  12. Stressors and Caregivers' Depression: Multiple Mediators of Self-Efficacy, Social Support, and Problem-Solving Skill.

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    Tang, Fengyan; Jang, Heejung; Lingler, Jennifer; Tamres, Lisa K; Erlen, Judith A

    2015-01-01

    Caring for an older adult with memory loss is stressful. Caregiver stress could produce negative outcomes such as depression. Previous research is limited in examining multiple intermediate pathways from caregiver stress to depressive symptoms. This study addresses this limitation by examining the role of self-efficacy, social support, and problem solving in mediating the relationships between caregiver stressors and depressive symptoms. Using a sample of 91 family caregivers, we tested simultaneously multiple mediators between caregiver stressors and depression. Results indicate that self-efficacy mediated the pathway from daily hassles to depression. Findings point to the importance of improving self-efficacy in psychosocial interventions for caregivers of older adults with memory loss.

  13. Taking Care of You: Self-Care for Family Caregivers

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    ... on Caregiving Caregiving Across the States: 50 State Profiles (2014) Research and Reports Caregiving Policy Digest Newsletter ... the nurse. Many caregiving questions relate more to nursing than to ... surgical procedures, providing personal care, and managing medications at ...

  14. The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden.

    Science.gov (United States)

    Torabi Chafjiri, Razieh; Navabi, Nasrin; Shamsalinia, Abbas; Ghaffari, Fatemeh

    2017-01-01

    Stroke is a chronic condition that necessitates multidimensional and overwhelming care. The caregivers of stroke patients are faced with various stressors that can threaten different aspects of their health, especially their mental health. Spiritual attitude and being spiritually oriented contribute significantly to mental health and can be used as a strategy for adapting to the stressful events that are part of the role of caregiving. This study was therefore conducted to investigate the relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden. This descriptive cross-sectional study was conducted in 2016. The study population consisted of all the family caregivers of older patients with stroke presenting to health care centers and nursing service companies of Gilan Province in Iran. The participants were selected through convenience sampling and consisted of 407 participants. Data were collected using the Spiritual Attitude Scale and the Caregiver Burden Inventory and were then analyzed in SPSS-18 using Pearson's correlation coefficient at a significance level of 0.05. The results showed that 88.9% of the caregivers were females. The mean age of the participants was 38.3±8.8 years. The duration of caregiving was caregivers, so that they can acquire the necessary spiritual support for overcoming the stress caused by caring for family members through the reinforcement of their spiritual beliefs in the ultimate effort to provide effective care to older patients while maintaining their own health and quality of life.

  15. Structured intervention in family caregivers of the demented elderly and changes in their immune function.

    Science.gov (United States)

    Hosaka, Takashi; Sugiyama, Yoko

    2003-04-01

    The aim of the present study was to investigate the effects of a group structured intervention on the mental and physical discomfort and immune function of 20 family caregivers. A structured intervention for caregivers consists of five sessions, each of which lasts 90 min. This was a modified version of the program that had been originally developed for cancer patients. All the family caregivers were female and ranged in age from 47 to 66 years (mean: 54.7 +/- 4.4). The period of care at home ranged from 1 to 12 years (mean: 5.8 +/- 2.7). Concerning the original diseases of the care-receivers, 10 had vascular dementia and eight had Alzheimer's disease. Nine out of 20 caregivers had no care support, and seven utilized no public resources such as day-care centers. Only five caregivers felt that they were healthy. Two psychometries, that is, Profile of Mood States (POMS) and General Health Questionnaire-30 (GHQ-30) were administered and blood samples were drawn before and after intervention. Comparison of results showed that there was significant improvement (P natural-killer cell activity. The present study suggests that this kind of intervention was effective for relieving emotional and physical discomfort, and also for improving immune function.

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

    Science.gov (United States)

    Chen, Yangkun

    2010-01-01

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

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

    Science.gov (United States)

    Chen, Yangkun

    2010-01-01

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

  18. [Proposal for a survey for assisting the family and caregivers of patients with spinal cord injuries].

    Science.gov (United States)

    Mancussi e Faro, A C

    1999-12-01

    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.

  19. Men as caregivers of the elderly: support for the contributions of sons

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    Collins CR

    2014-11-01

    Full Text Available Cynthia R Collins Loyola University New Orleans, College of Social Sciences/School of Nursing, New Orleans, LA, USA Abstract: Emerging practice research on filial sources of health care support has indicated that there is a growing trend for sons to assume some responsibility for the health care needs of their aging parents. The purpose of this work is to propose that outcomes observed through a secondary analysis of data from a previous mixed methods research project, conducted with a sample of 60 elderly women residing in independent living centers, supports this concept in elder care. The present study is a retrospective interpretation utilizing the original database to examine the new question, “What specific roles do sons play in caregiving of their elderly mothers?” While daughters presently continue to emerge in existing health care studies as the primary care provider, there is a significant pattern in these data for older patients to depend upon sons for a variety of instrumental activities of daily living. As the baby-boomers age, there is more of cohort trend for their families to be smaller, adult daughters to be employed, and for adult children to be more geographically mobile. These factors may combine to make health care support networks more limited for the current aging population, challenging the elderly and their health care providers to revisit the cultural gender norms that are used to identify caregivers. Keywords: sons as caregivers, male caregivers, aging parents, filial support, informal caregivers 

  20. Investigating the Relationship Between Family Caregiving and Chronic Diseases Among Sandwich Generation Females

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    Zangeneh Pour Zadeh

    2016-10-01

    Full Text Available Background In the recent years, chronic diseases have been identified as challenges of public health and healthcare and are the major causes of death in the female population. Females make up 75% of family caregivers. The sandwich generation females, who care for their aging parents while supporting their own children, encounter an increase in stress related to chronic diseases, but in some studies, the issue of care involves lower depression risk and more constructive psychological effects. Objectives The aim of the present study was to investigate the relationship between family caregiving and chronic diseases in sandwich generation females. Patients and Methods This study was a case-control study in Ahvaz in which 360 females including 180 sandwich generation caregivers and 180 caregivers of one generation (i.e. those only taking care of their own child were selected using the random cluster sampling method during six months. The two groups of participants were matched in terms of age, number of children under their care and their socioeconomic status. Data analysis was conducted using the Kolmogorov-Smirnov (K-S test or KS test and chi-square tests through the SPSS v.22 software. Results A statistically significant difference was found between the two groups in terms of the presence of chronic diseases (P = 0.001. There was a significant correlation between chronic diseases and number of children (P = 0.03, person receiving care (P = 0.004, educational level (P = 0.001, caregiving duration (P = 0.005, and socioeconomic status (P = 0.14. Chronic diseases in caregivers with more than four children, under diploma educational level, and with unfavorable socioeconomic status were more than others. Additionally, the occurrence of chronic diseases was more in females caring for their grandchildren. There was no significant correlation between chronic diseases and the age of caregivers (P > 0.05. Conclusions The current study revealed that a

  1. Caregiving-specific worry, affiliate stigma, and perceived social support on psychological distress of caregivers of children with physical disability in Hong Kong.

    Science.gov (United States)

    Ma, Gloria Y K; Mak, Winnie W S

    2016-01-01

    The present study tested a model on the relationship between functional status of children with physical disability, caregiving-specific worry, affiliate stigma, and psychological distress among their caregivers. One hundred thirty-one caregivers of children with physical disability in Hong Kong completed a self-report questionnaire. Structural equation modeling showed that the final model had good fit to the data: χ2 = 102.05, (df = 83, p = .08), comparative fit index = .98, nonnormed fit index = .98, standardized root mean square residual = .08, root mean square error of approximation = .04. Caregivers whose children had a lower functional status reported more caregiving-specific worry. Affiliate stigma had significant and positive indirect effect on psychological distress through increasing worry. Results also supported the direct and indirect effects of perceived social support in ameliorating worry, affiliate stigma, and psychological distress. Findings suggested that health care and social service providers should consider the functional impairment of each child when designing stress reduction interventions for their caregivers. Findings implicate the importance of establishing barrier-free environment and public facilities in the society. Caregivers are encouraged to distinguish those worries that are actionable and convert them into problem solving plans and to actively engage in peer support and social activities to reduce their affiliate stigma. To truly promote inclusion and well-being of individuals with disability and their caregivers, the scope and targets of social services and stigma reduction programs by the government should include not only the persons with disabilities, but also their caregivers and family members who play essential roles in the rehabilitation journey. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

  2. Taking care of one's own: justice and family caregiving.

    Science.gov (United States)

    Jecker, Nancy S

    2002-01-01

    This paper asks whether adult children have a duty of justice to act as caregivers for their frail, elderly parents. I begin (Sections I. and II.) by locating the historical reasons why relationships within families were not thought to raise issues of justice. I argue that these reasons are misguided. The paper next presents specific examples showing the relevance of justice to family relationships. I point out that in the United States today, the burden of caregiving for dependent parents falls disproportionately on women (Sections III. and IV.). The paper goes on to use Rawls' theoretical tool of the veil of ignorance to argue that caring for parents should not be linked to a person's sex and more generally, that there is no duty of justice to assume the role of caregiver for dependent parents (Sections V.). Although justice does not provide the moral foundations for parent care, I show that it nonetheless places important limits on the instinct to care. I conclude that the voice of justice should be audible, and is intrinsically present, within families.

  3. Health self-perception by dementia family caregivers: sociodemographic and clinical factors

    Directory of Open Access Journals (Sweden)

    Letice Ericeira Valente

    2011-10-01

    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.

  4. Psychological state and needs of family member caregivers for victims of traumatic brain injury: A cross-sectional descriptive study

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    Weihua Liu

    2015-09-01

    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.

  5. Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home

    Directory of Open Access Journals (Sweden)

    Hiroko Toyama

    2016-12-01

    Full Text Available Family caregivers of patients with terminal-stage cancer have numerous roles as caregivers, which can influence their anticipatory grief. The purpose of this study was to clarify how talking to family caregivers of patients with terminal illness using the narrative approach can influence such caregivers’ process of anticipatory grief. We conducted the narrative approach as an intervention with two family caregivers several times and qualitatively analyzed their narratives. The results indicated that these family caregivers had two primary roles—family member and caregiver—and that family caregivers felt trapped in their caregiver role. The narrative approach helped them transition into the role needed for coping with the loss.

  6. Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home

    Directory of Open Access Journals (Sweden)

    Hiroko Toyama

    2016-12-01

    Full Text Available Family caregivers of patients with terminal-stage cancer have numerous roles as caregivers, which can influence their anticipatory grief. The purpose of this study was to clarify how talking to family caregivers of patients with terminal illness using the narrative approach can influence such caregivers’ process of anticipatory grief. We conducted the narrative approach as an intervention with two family caregivers several times and qualitatively analyzed their narratives. The results indicated that these family caregivers had two primary roles—family member and caregiver—and that family caregivers felt trapped in their caregiver role. The narrative approach helped them transition into the role needed for coping with the loss.

  7. Sociocultural and Familial Influences on the Well-Being of Mexican Older Adults' Family Caregivers.

    Science.gov (United States)

    Domínguez-Guedea, Miriam Teresa; Garcia, Abraham Ocejo

    2015-01-01

    The current study analyzed the influence of burden on the well-being of caregivers by exploring the mediating role of sociocultural and family factors. The study sample comprised 386 Mexican caregivers between ages 19 and 87 (mean age = 49.05; SD =12.41 years). The results from the current research showed that burden scores are negatively associated with well-being, sociocultural, and family scores. However, the effect of burden on subjective well-being is minimized by the mediation effect of sociocultural and family resources between burden and well-being. The complexities of sociocultural and family influences should be taken into account to change the prevailing individualistic approach within the current stress and family caregiver well-being paradigm.

  8. The association between family caregivers' involvement in managing older adults' medications and caregivers' information-seeking behavior.

    Science.gov (United States)

    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

  9. Linking family dynamics and the mental health of Colombian dementia caregivers.

    Science.gov (United States)

    Sutter, Megan; Perrin, Paul B; Chang, Yu-Ping; Hoyos, Guillermo Ramirez; Buraye, Jaqueline Arabia; Arango-Lasprilla, Juan Carlos

    2014-02-01

    This cross-sectional, quantitative, self-report study examined the relationship between family dynamics (cohesion, flexibility, pathology/ functioning, communication, family satisfaction, and empathy) and mental health (depression, burden, stress, and satisfaction with life [SWL]) in 90 dementia caregivers from Colombia. Hierarchical multiple regressions controlling for caregiver demographics found that family dynamics were significantly associated with caregiver depression, stress, and SWL and marginally associated with burden. Within these regressions, empathy was uniquely associated with stress; flexibility with depression and marginally with SWL; and family communication marginally with burden and stress. Nearly all family dynamic variables were bivariately associated with caregiver mental health variables, such that caregivers had stronger mental health when their family dynamics were healthy. Family-systems interventions in global regions with high levels of familism like that in the current study may improve family empathy, flexibility, and communication, thereby producing better caregiver mental health and better informal care for people with dementia.

  10. Caregiver Training in Mindfulness-Based Positive Behavior Supports (MBPBS: Effects on Caregivers and Adults with Intellectual and Developmental Disabilities

    Directory of Open Access Journals (Sweden)

    Nirbhay N. Singh

    2016-02-01

    Full Text Available Caregivers often manage the aggressive behavior of individuals with intellectual and developmental disabilities that reside in community group homes. Sometimes this results in adverse outcomes for both the caregivers and the care recipients. We provided a 7-day intensive Mindfulness-Based Positive Behavior Support (MBPBS training to caregivers from community group homes and assessed the outcomes in terms of caregiver variables, individuals’ behaviors, and an administrative outcome. When compared to pre-MBPBS training, the training resulted in the caregivers using significantly less physical restraints, and staff stress and staff turnover were considerably reduced. The frequency of injury to caregivers and peers caused by the individuals was significantly reduced. A benefit-cost analysis showed substantial financial savings due to staff participation in the MBPBS program. This study provides further proof of concept for the effectiveness of MBPBS training for caregivers, and strengthens the call for training staff in mindfulness meditation.

  11. Supporting caregivers of stroke patients : an intervention study

    NARCIS (Netherlands)

    Heuvel, Elisabeth Theodora Petronella van den

    2002-01-01

    This thesis describes the development, implementation and results of an intervention targeted at two of the above-mentioned factors: caregiver characteristics and resources (knowledge and coping abilities) and social support. Furthermore, some insight is afforded into the state of the art of

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

    Directory of Open Access Journals (Sweden)

    Patrícia Paes Araujo Fialho

    2012-10-01

    Full Text Available OBJECTIVE: It was to examine the effects of a Cognitive-Behavioral Therapy (CBT program administered to family caregivers of dementia patients. METHODS: Forty family caregivers were enrolled in a CBT intervention across eight weekly sessions. Cognitive, functional and behavioral status of patients were evaluated, as well as their own and their family caregivers' perceptions of quality of life. Specific instruments were also applied to evaluate caregiver stress level, coping, anxiety and depression. RESULTS: At the end of the program, family caregivers reported fewer neuropsychiatric symptoms among patients and an improvement in patients' quality of life. In addition, caregivers changed their coping strategies, whereas a significant decrease was observed in their anxiety levels. CONCLUSION: The CBT program employed appears to be a promising and useful tool for clinical practice, displaying positive effects on quality of life and neuropsychiatric symptoms of dementia, as well as proving beneficial for alleviating anxiety and stress in family caregivers.

  13. Spiritual needs of patients with cancer and family caregivers.

    Science.gov (United States)

    Taylor, Elizabeth Johnston

    2003-08-01

    The purpose of this descriptive, cross-sectional, qualitative study was to describe the spiritual needs experienced in living with cancer from the perspective of patients with cancer and family caregivers. The sample included 28 African American and Euro-American patients with cancer and family caregivers receiving care from inpatient and outpatient units at two metropolitan hospitals in the southwestern United States. In-depth, tape-recorded, semistructured interviews were analyzed using the process of data reduction, data display, and verification. Seven categories of identified spiritual needs included needs associated with relating to an Ultimate Other; the need for positivity, hope, and gratitude; the need to give and receive love; the need to review beliefs, the need to have meaning; and needs related to religiosity and preparation for death. Informants responded with varying levels of awareness of personal spiritual needs. Caregivers were observed to have spiritual needs similar to those of patients. The findings of this study will inform nurses as they assess and document spiritual needs.

  14. Changes in Families' Caregiving Experiences through Involvement as Participants then Facilitators in a Family Peer-Education Program for Mental Disorders in Japan.

    Science.gov (United States)

    Kageyama, Masako; Yokoyama, Keiko; Nakamura, Yukako; Kobayashi, Sayaka

    2017-06-01

    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.

  15. Effectiveness of an Interdisciplinary Palliative Care Intervention for Family Caregivers in Lung Cancer

    Science.gov (United States)

    Sun, Virginia; Grant, Marcia; Koczywas, Marianna; Freeman, Bonnie; Zachariah, Finly; Fujinami, Rebecca; Del Ferraro, Catherine; Uman, Gwen; Ferrell, Betty

    2015-01-01

    Background Family caregivers (FCGs) experience significant deteriorations in quality of life while caring for lung cancer patients. This study tested the effectiveness of an interdisciplinary palliative care intervention for FCGs of patients diagnosed with stage I–IV non-small cell lung cancer (NSCLC). Methods FCGs who were identified by patients as the primary caregiver were enrolled in a prospective, quasi-experimental study whereby the usual care group was accrued first followed by the intervention group. FCGs in the intervention group were presented at interdisciplinary care meetings, and they also received four educational sessions organized in the physical, psychological, social, and spiritual domains. The sessions included self-care plans to support the FCG’s own needs. Caregiver burden, caregiving skills preparedness, psychological distress, and FCG QOL were assessed at baseline and 12 weeks using validated measures. Results A total of 366 FCGs were included in the primary analysis. FCGs who received the interdisciplinary palliative care intervention had significantly better scores for social well-being (5.84 vs. 6.86; pcaregiver burden compared to FCGs in the usual care group (p=.008). Conclusions An interdisciplinary approach to palliative care in lung cancer resulted in statistically significant improvements in the FCG’s social well-being, psychological distress, and less caregiver burden. PMID:26150131

  16. 老年临终患者家属照顾者照顾反应与社会支持的相关性研究%Correlation study of social support and family caregivers take care react for elderly dying patients

    Institute of Scientific and Technical Information of China (English)

    郭小璐; 曹梅娟

    2014-01-01

    Objective To study the caregiver reaction among family caregivers for patients who were in the end‐of‐life ,and to explore the relation‐ship between caregiver burden and social support .Method 264 caregivers of elder‐ly dying patient were investigated by using the questionnaires of caregiver reaction assessment(CRA)and medical outcomes study social support survey(MOS‐SSS) .The relationship between the various dimensions reaction condi‐tions and their social care support was analyzed .Result Self‐esteem was the highest‐scoring dimension in the caregiv‐er reaction ssessment ,for the negative dimensions ranked by the score were disrupted schedule ,health problem ,fi‐nancial problem and lack of family support ;The total score of social support was (58 .69 ± 2 .44) ,which is much lower than that of normal standard .There was no significant correlation between care‐givers take care reaction and social support dimensions .Other negative dimensions of CRA were negatively correlated with total score of social support availability .Conclusion For dying patients and their families providing hospice care services ,it should pay attention to social support and caregivers care reaction ,provide appropriate care measures against the population and improve the level of social support of family caregivers ,reduce caregiver burden and enhance their inner positive ex‐perience in order to protect the quality of life for dying patients and their family caregivers .%目的:探讨老年临终患者家属照顾者照顾反应和社会支持关系。方法采用照顾者反应量表(CRA)和社会支持量表(MOS‐SSS)对264例老年临终患者家属照顾者进行调查,并分析照顾反应各维度与其社会支持情况的关系。结果老年临终患者家属照顾者照顾反应自尊维度得分最高,其余消积结果中得分排名依次为时间受打扰、健康问题维度、经济问题维度和家庭支持维

  17. The relationship between geographical and social space and approaches to care among rural and urban caregivers caring for a family member with Dementia: a qualitative study.

    Science.gov (United States)

    Ehrlich, Kethy; Emami, Azita; Heikkilä, Kristiina

    2017-01-17

    Knowledge about family caregivers in rural areas remains sparse. No studies to date have addressed the sociocultural aspects in caregiving, thus neglecting potentially significant data. This study aimed to explore and better understand family caregivers' experiences in rural and urban areas and the sociocultural spheres that these two areas represent. How do family caregivers approach their caregiving situation? A hermeneutical approach was chosen to uncover the underlying meanings of experiences. Open-ended in-depth interviews were conducted. The ontological and epistemological roots are based on hermeneutic philosophy, where a human being's existence is viewed as socially constructed. The study followed a purposeful sampling. Semi-structured in-depth interviews were conducted with 12 rural and 11 urban family caregivers to persons with dementia. These were then analyzed in accordance with the hermeneutical process. The findings provide insight into the variations of family caregiver approaches to caregiving in rural and urban areas of Sweden. There seemed to be a prevalence of a more accepting and maintaining approach in the rural areas as compared to the urban areas, where caregiving was more often viewed as an obligation and something that limited one's space. Differences in the construction of family identity seemed to influence the participants approach to family caregiving. Therefore, community-based caregiving for the elderly needs to become aware of how living within a family differs and how this affects their views on being a caregiver. Thus, support systems must be individually adjusted to each family's lifestyles so that this is more in tune with their everyday lives.

  18. Low-Income Children, Adolescents, and Caregivers Facing Respiratory Problems: Support Needs and Preferences.

    Science.gov (United States)

    Stewart, Miriam; Evans, Joshua; Letourneau, Nicole; Masuda, Jeffrey; Almond, Amanda; Edey, Jocelyn

    2016-01-01

    Burdens of poverty are often compounded by respiratory problems. This study aimed to identify the support needs and intervention preferences for low-income families facing this challenge. Interviews were conducted in two Canadian provinces with low-income children/adolescents (n=32) diagnosed with respiratory health problems and their parents or family caregiver (n=37). These vulnerable children and parents described non-supportive interactions with some health service providers and inadequate information. They reported isolation and support deficits, exacerbated by limited resources and health restrictions. Children/adolescents felt isolated and excluded and wanted to connect with peers. Group or dyadic level support, delivered by peers and health professionals, was desired. The importance of logistics to enhance accessibility and appeal of group or dyadic support interventions was clearly identified. The findings of this study reveal that low-income children and their families encounter challenges to accessing support and to utilizing support resources. Partnerships with low-income children/adolescents and family caregivers in provision of education and social support can combat isolation and ignorance. Reducing inequities for this high risk population could be achieved by providing support from experienced peers, in combination with health professional guidance, and knowledge about pulmonary health. Copyright © 2016. Published by Elsevier Inc.

  19. Informal Care Provided by Family Caregivers: Experiences of Older Adults With Multimorbidity.

    Science.gov (United States)

    Lindvall, Agneta; Kristensson, Jimmie; Willman, Ania; Holst, Göran

    2016-08-01

    caregivers. 2. Identify how professional caregivers and health care providers can support informal/family caregivers. DISCLOSURE STATEMENT Neither the planners nor the author have any conflicts of interest to disclose. Informal care given by family caregivers is an important part of the total care provided to older adults with multimorbidity. The current study aimed to describe how older adults with multimorbidity experienced care from family caregivers. Interviews were conducted with 24 participants (mean age = 86 years). Older adults with multimorbidity felt gratitude toward family caregivers for their willingness to help with everyday life and for representing their interests in contacts with health care providers. Family caregivers also had a significant impact on older adults' psychological well-being. However, the results also showed that older adults often felt they were a burden to their family caregivers and that their independence might be reduced. Older adults with multimorbidity should have the opportunity to be more involved in and have more influence over their health care so that they do not have to depend on representation by family caregivers. [Journal of Gerontological Nursing, 42(8), 24-31.].

  20. [The legal limits and ambiguities of the role of the family caregivers].

    Science.gov (United States)

    Hazif-Thomas, C; Thomas, P; Tritschler-LeMaître, M-H; Walter, M

    2012-10-01

    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.

  1. Length of hospice enrollment and subsequent depression in family caregivers: 13-month follow-up study.

    Science.gov (United States)

    Kris, Alison E; Cherlin, Emily J; Prigerson, Holly; Carlson, Melissa D A; Johnson-Hurzeler, Rosemary; Kasl, Stanislav V; Bradley, Elizabeth H

    2006-03-01

    Although more people are using hospice than ever before, the average length of hospice enrollment is decreasing. Little is known about the effect of hospice length of enrollment on surviving family caregivers. The authors examine the association between patient length of hospice enrollment and major depressive disorder (MDD) among the surviving primary family caregivers 13 months after the patient's death. The authors conducted a three-year longitudinal study of 175 primary family caregivers of patients with terminal cancer who consecutively enrolled in the participating hospice from October 1999 through September 2001. Interviews were conducted with the primary family caregiver when the patient first enrolled with hospice and again 13 months after the patient's death. The authors used multivariate logistic regression models to estimate caregivers' adjusted risk at 13 months postloss for MDD, assessed using the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (SCID). The effect of very short hospice length of enrollment (three days or less) compared with longer lengths of enrollment on caregiver MDD 13 months after their loss was nonsignificant in unadjusted analyses. The adjusted risk of MDD was significantly elevated for caregivers of patients who had very short hospice enrollments (adjusted odds ratio: 8.76, 95%confidence interval: 1.09-70.19) only after adjusting for baseline MDD, caregiver gender, caregiver age, kinship relationship to patient, caregiver education, caregiver chronic conditions, and caregiver burden. The adjustment for caregiver burden resulted in the greatest increase in odds ratio for very short hospice length of enrollment on risk of caregiver MDD 13 months after the loss. This study identifies a potential target group of family caregivers, characterized by hospice length of enrollment and several caregiver features, who might be most in need of mental health interventions.

  2. The Effect of a Family Therapy and Technology-Based Intervention on Caregiver Depression

    Science.gov (United States)

    Eisdorfer, Carl; Czaja, Sara J.; Loewenstein, David A.; Rubert, Mark P.; Arguelles, Soledad; Mitrani, Victoria B.; Szapocznik, Jose

    2003-01-01

    Purpose: The majority of persons with Alzheimer's disease (AD) are cared for at home by a family member such as a spouse or daughter. Caregiving places enormous demands on these caregivers, and the negative consequences associated with caregiving are well documented. This paper reports results from the Miami site of the REACH (Resources for…

  3. Socialization of Coping with Community Violence: Influences of Caregiver Coaching, Modeling, and Family Context

    Science.gov (United States)

    Kliewer, Wendy; Parrish, Katie Adams; Taylor, Kelli W.; Jackson, Kate; Walker, Jean M.; Shivy, Victoria A.

    2006-01-01

    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…

  4. Usability of a Wearable Camera System for Dementia Family Caregivers

    Directory of Open Access Journals (Sweden)

    Judith T. Matthews

    2015-01-01

    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.

  5. Caring for family caregivers: An analysis of a family-centered intervention

    Directory of Open Access Journals (Sweden)

    Carme Ferré-Grau

    2014-08-01

    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.

  6. [Factors affecting subjective satisfaction with verbal communication among the disabled elderly and their family caregivers].

    Science.gov (United States)

    Miura, Hiroko; Arai, Yumiko; Yamasaki, Kiyoko

    2005-05-01

    The aims of the present study were to investigate satisfaction with verbal communication among the disabled elderly and their family caregivers; and to find the significantly influential factors of satisfaction with verbal communication. The subjects were 85 disabled elderly and 85 family caregivers. For the disabled elderly, satisfaction with verbal communication, demographic, and physical factors were examined using an interview survey. For the caregivers, satisfaction with verbal communication, demographic factors, and some factors related caregiving were examined using a self-administered questionnaire. In the disabled elderly, 82.4% were satisfied with their verbal communication while 55.3% of family caregivers were satisfied. Satisfaction with verbal communication between the disabled elderly and their caregivers showed low agreement (kappa = 0.17). Bivariate analysis revealed that satisfaction with verbal communication of the disabled elderly was significantly related to ADL (p verbal communication of caregivers was significantly related to the gender of the disabled elderly and caregivers' burden. Furthermore, multiple regression analysis showed that the factor most related to satisfaction with verbal communication for the disabled elderly was ability of comprehension (p value = 0.032, odds ratio = 2.960), and the most related factor for their caregivers was the burden evaluated by J-ZBI_8 (p value = 0.004, odds ratio = 0.842). These results suggest that satisfaction with verbal communication of the disabled elderly disagrees with that of the family caregivers, and that some related factors for the disabled elderly are different from those in their family caregivers.

  7. Communication between nurses and family caregivers of hospitalised older persons: a literature review.

    Science.gov (United States)

    Bélanger, Louise; Bourbonnais, Anne; Bernier, Roxanne; Benoit, Monique

    2017-03-01

    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.

  8. Development and psychometric testing of the Suicide Caring Competence Scale (SCCS) for family caregivers in Taiwan.

    Science.gov (United States)

    Sun, Fan-Ko; Chiang, Chun-Ying; Chen, Wei-Jen; Wang, Ruey-Hsia; Huang, Hui-Man; Lin, Hung-Yen

    2014-08-01

    Suicide caring competence is important for family caregivers to care their relatives with suicidal tendencies. The purpose of this study was to develop and test the psychometric properties of the Suicide Caring Competence Scale (SCCS) for family caregivers in Taiwan. A 20-item SCCS was tested on 165 family caregivers. Confirmatory factor analysis indicated that five subscales with 19 items best fit the data. The Cronbach's α and test-retest reliability of the SCCS was 0.90 and 0.81, respectively. The SCCS demonstrated acceptable construct validity and reliability. Nurses can use the SCCS to assess the suicide caring competence of family caregivers.

  9. Home-based music strategies with individuals who have dementia and their family caregivers.

    Science.gov (United States)

    Hanser, Suzanne B; Butterfield-Whitcomb, Joan; Kawata, Mayu; Collins, Brett E

    2011-01-01

    The purpose of this exploratory study was to test a caregiver-administered music program with family members who have dementia. The music protocol was designed to reduce distress and enhance satisfaction with caregiving, while offering the person with dementia the potential to improve mood and psychological state. Fourteen elders with dementia and their family caregivers were recruited, and 8 completed the protocol. Both caregivers and care recipients improved self-reported relaxation, comfort, and happiness, when mean scores were compared between baseline and music conditions. Caregivers showed the most benefit. While drop-out was high (6 families dropped), and caregiving satisfaction failed to improve over time, caregivers expressed enjoyment in reminiscing and participating in musical activities with their loved ones. More direct intervention by a music therapist is recommended to improve impact.

  10. Tracking Patterns of Needs During a Telephone Follow-up Program for Family Caregivers of Persons with Stroke

    Science.gov (United States)

    Bakas, Tamilyn; Jessup, Nenette M.; McLennon, Susan M.; Habermann, Barbara; Weaver, Michael T.; Morrison, Gwendolyn

    2016-01-01

    Purpose Programs that address stroke family caregiver needs and skill-building are recommended based on the literature and patient care guidelines for stroke rehabilitation. The purpose of this study was to explore patterns of perceived needs and skill-building during a stroke caregiver intervention program. Method Descriptive statistics were used to analyze data from 123 stroke caregivers enrolled in the intervention group of a randomized controlled clinical trial. Caregivers received 8 weekly telephone sessions, with a booster session a month later. At each session, the Caregiver Needs and Concerns Checklist (CNCC) was used to identify and prioritize current needs that were then addressed through skill-building strategies. Results Perceived needs changed over time. Information about stroke was the highest priority need during Session 1. Managing survivor emotions and behaviors was the highest priority for Sessions 2 through 4. Caregivers generally waited until Sessions 5 through 9 to address their own emotional and physical health needs. Physical and instrumental care needs were relatively low but stable across all 9 sessions. Skill-building was consistently high, though it peaked during Sessions 2 and 3. Conclusions Tracking patterns of needs and skill-building suggest appropriate timing for targeting different types of family caregiver support during stroke rehabilitation. PMID:26680007

  11. The Family Time Squeeze: Perceived Family Time Adequacy Buffers Work Strain in Certified Nursing Assistants With Multiple Caregiving Roles.

    Science.gov (United States)

    DePasquale, Nicole; Mogle, Jacqueline; Zarit, Steven H; Okechukwu, Cassandra; Kossek, Ellen Ernst; Almeida, David M

    2017-01-10

    This study examined how certified nursing assistants (CNAs) with unpaid family caregiving roles for children ("double-duty-child caregivers"), older adults ("double-duty-elder caregivers"), and both children and older adults ("triple-duty caregivers") differed from their nonfamily caregiving counterparts ("workplace-only caregivers") on four work strain indicators (emotional exhaustion, job satisfaction, turnover intentions, and work climate for family sacrifices). The moderating effects of perceived family time adequacy were also evaluated. Regression analyses were conducted on survey data from 972 CNAs working in U.S.-based nursing homes. Compared with workplace-only caregivers, double-and-triple-duty caregivers reported more emotional exhaustion and pressure to make family sacrifices for the sake of work. Triple-duty caregivers also reported less job satisfaction. Perceived family time adequacy buffered double-duty-child and triple-duty caregivers' emotional exhaustion and turnover intentions, as well as reversed triple-duty caregivers' negative perceptions of the work climate. Perceived family time adequacy constitutes a salient psychological resource for double-duty-child and triple-duty caregivers' family time squeezes. Amid an unprecedented demand for long-term care and severe direct-care workforce shortages, future research on workplace factors that increase double-and-triple-duty caregiving CNAs' perceived family time adequacy is warranted to inform long-term care organizations' development of targeted recruitment, retention, and engagement strategies. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  12. Lennox–Gastaut syndrome: impact on the caregivers and families of patients

    Directory of Open Access Journals (Sweden)

    Gibson PA

    2014-10-01

    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

  13. A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation.

    Science.gov (United States)

    Young, Mary Ellen; Lutz, Barbara J; Creasy, Kerry Rae; Cox, Kim J; Martz, Crystal

    2014-01-01

    Stroke caregivers have been identified as a group at high risk for poor outcomes as a result of the suddenness of stroke and a potentially high level of care needed due to significant functional limitations of the patient. However, there is little research on the assessment of family members who will assume the caregiving role prior to patient discharge from rehabilitation. The purpose of this article is to delineate critical assessment domains identified by a subset of spousal stroke caregivers. Semi-structured interviews were conducted pre- and post-discharge from rehabilitation as part of a larger study that focused on identifying caregiver and stroke survivor needs as they transitioned home from inpatient rehabilitation. For this study, two semi-structured interviews with 14 spousal caregivers were analyzed using grounded theory methods. Long-term stroke survivor outcomes were dependent upon the commitment, capacity and preparedness of the family caregiver. Twelve domains of assessment were identified and presented. A comprehensive, systematic caregiver assessment to understand the caregiver's concerns about stroke should be conducted during rehabilitation to help the team to develop a plan to address unmet needs and better prepare family caregivers to take on the caregiving role. Stroke is a sudden event that often leaves stroke survivors and their families in crisis. The needs of stroke family caregivers are not often systematically assessed as part of inpatient rehabilitation. Long-term stroke survivor outcomes are dependent upon the commitment, capacity and preparedness of the family caregiver. Stroke caregiver assessment should include the commitment, capacity and preparedness to provide care, and the overall impact of stroke in order to develop discharge plans that will adequately address the needs of the stroke survivor/caregiver dyad.

  14. Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study.

    Science.gov (United States)

    Alshubaili, Asmahan F; Ohaeri, Jude U; Awadalla, Abdel W; Mabrouk, Asser A

    2008-10-07

    Research interest in the quality of life (QOL) of persons with multiple sclerosis (MS) has been spurred by the need to broaden outcome measures. Far less of this interest has been directed at the family caregivers, who bear most of the burden of care. The objectives of the study were: First, to compare the subjective QOL of family caregivers of persons with relapsing remitting and progressive MS, with those of a matched general population sample and caregivers of diabetes and psychiatric patients. Second, to assess the relationship of QOL with caregiver attitudes to MS and patient's variables. Consecutive MS clinic attendees were assessed with the 26 - item WHOQOL Instrument, and for depression and disability. Similarly, caregivers independently rated their own QOL as well as their impression of patients' QOL and attitudes to patients' illness. The 170 caregivers, mean age 35.7 years, had no significant diagnostic differences in QOL domain scores and attitudes to MS. Caregivers had significantly lower QOL than the general population control group for five out of six domains and the general facet (P QOL than the patients. When the scores were corrected for patients' depression and disability, caregivers had similar QOL with the general population group for four domains. Using corrected scores, MS caregivers had lower scores than diabetic and psychiatric caregivers in the physical, psychological and social relations domains. Majority expressed negative attitudes to MS. Caregiver QOL was more affected by their fear of having MS than their feelings about the illness and caregiving role. Caregiver attitudes had mostly no significant impact on their proxy ratings of patients' QOL. The significant predictor of caregivers' overall QOL was their impression of patients' QOL. Caregivers need specific attention if they are less educated, unemployed, afraid of having MS and caring for patients with longer duration of illness and less education. In particular, attention to

  15. Informal stroke caregivers' self-appraised problem-solving abilities as a predictor of well-being and perceived social support.

    Science.gov (United States)

    Lui, May H-L; Lee, Diana T F; Greenwood, Nan; Ross, Fiona M

    2012-01-01

    To describe the relationship between self-appraised problem-solving abilities and psychological distress, burden and perceived social support in informal, family stroke caregivers. Previous research suggests that self-appraised problem-solving abilities play a significant role in the well-being of family caregivers of patients with chronic illness. However, little is known about its role in caregivers of stroke survivors. Prospective correlational study. One week before discharge, 103 family caregivers of survivors of a first stroke were assessed for their perceived problem-solving abilities, social support, anxiety, depression and physical well-being. At three months postdischarge, 85 of these caregivers (83% retention) were reassessed on the same measures. In addition, their levels of burden and perceived difficulties were also measured. Using multiple regression, overall self-appraised problem-solving abilities and its subscale 'confidence in problem-solving' at one week before discharge were significant predictors of caregiver perceived social support (R(2) = 29%) and perceived physical well-being (R(2) = 42%) at three months postdischarge. Other relationships were non-significant. Caregivers' perceived social support and physical well-being were significantly predicted by confidence in problem-solving. This study is timely given the challenges facing health systems in Hong Kong to effectively manage chronic illness through family-centred care. The significant relationships between caregiver self-appraised problem-solving, perceived social support and well-being suggest that interventions maximising caregiver confidence in problem-solving might be valuable in supporting family caregivers of stroke survivors. Nurses working with families caring for stroke survivors both close to discharge and in the early transition stages back at home may be in an ideal position to offer this support. © 2011 Blackwell Publishing Ltd.

  16. Validation of the Italian Version of the Caregiver Abuse Screen among Family Caregivers of Older People with Alzheimer's Disease

    Science.gov (United States)

    Di Rosa, Mirko; Barbabella, Francesco; Barbini, Norma; Chiatti, Carlos

    2017-01-01

    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. PMID:28265571

  17. A DVD program on fall prevention skills training for cancer family caregivers.

    Science.gov (United States)

    Potter, Patricia; Olsen, Sarah; Kuhrik, Marilee; Kuhrik, Nancy; Huntley, Lance R

    2012-03-01

    This feasibility study tested an instructional DVD program for improving cancer family caregivers' knowledge and preparedness in fall prevention and reducing fall occurrence among the patients they care for at home. DVD program features included training caregivers on safe mobility skills. Family caregivers of cancer patients were surveyed before and after viewing the DVD program on "Moving Safely" in the home. Cancer patients were followed 4 months postintervention to determine if fall occurrence was reduced. There was a decrease in the number of patients who fell postintervention compared with those who fell preintervention. Caregivers' perceptions of knowledge about fall prevention improved significantly after viewing the DVD. An instructional DVD program is an effective educational tool for preparing family caregivers with the knowledge and skills needed to reduce the incidence of falls in the home setting. Educators must develop programs for preparing family caregivers to perform nursing skills within the home.

  18. Implications of smart wear technology for family caregiving relationships: focus group perceptions.

    Science.gov (United States)

    Hall, Scott S; Kandiah, Jayanthi; Saiki, Diana; Nam, Jinhee; Harden, Amy; Park, Soonjee

    2014-10-01

    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.

  19. Comparing Affiliate Stigma Between Family Caregivers of People With Different Severe Mental Illness in Taiwan.

    Science.gov (United States)

    Chang, Chih-Cheng; Yen, Cheng-Fang; Jang, Fong-Lin; Su, Jian-An; Lin, Chung-Ying

    2017-07-01

    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 stigma. The affiliate stigma of caregivers is associated with their self-esteem, caregiver burden, and by the diagnosis.

  20. Effectiveness of online cognitive behavioral therapy on family caregivers of people with dementia

    Directory of Open Access Journals (Sweden)

    Kwok T

    2014-04-01

    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

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

    Science.gov (United States)

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

    2016-03-01

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

  2. Caring in the Information Age: Personal Online Networks to Improve Caregiver Support.

    Science.gov (United States)

    Piraino, Emily; Byrne, Kerry; Heckman, George A; Stolee, Paul

    2017-06-01

    It is becoming increasingly important to find ways for caregivers and service providers to collaborate. This study explored the potential for improving care and social support through shared online network use by family caregivers and service providers in home care. This qualitative study was guided by Rogers' Theory of Diffusion of Innovations [NY: Free Press; 1995], and involved focus group and individual interviews of service providers (n = 31) and family caregivers (n = 4). Interview transcriptions were analyzed using descriptive, topic, and analytic coding, followed by thematic analysis. The network was identified as presenting an opportunity to fill communication gaps presented by other modes of communication and further enhance engagement with families. Barriers included time limitations and policy-related restrictions, privacy, security, and information ownership. Online networks may help address longstanding home-care issues around communication and information-sharing. The success of online networks in home care requires support from care partners. Future research should pilot the use of online networks in home care using barrier and facilitator considerations from this study.

  3. The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: a systematic review and meta-analysis.

    Science.gov (United States)

    Cheng, Ho Yu; Chair, Sek Ying; Chau, Janita Pak-Chun

    2014-04-01

    To evaluate the effectiveness of psychosocial interventions for family caregivers on their psychosocial and physical wellbeing, quality of life, and the use of healthcare resources by stroke survivors. Electronic English and Chinese bibliographic databases were searched (inception to January 2012) for clinical trials. Two reviewers independently selected and appraised study quality. When possible, data from randomized controlled trials (RCTs) were statistically pooled. Otherwise, a narrative summary was used. Eighteen studies (psychoeducation and social support group) were included. Pooled analysis of two individual psychoeducation programs showed a small effect on improving family functioning (SMD: -0.12; 95% CI: -0.23 to -0.01; p=0.03). Caregivers receiving psychoeducation that aimed at equipping caregivers with the skills of problem-solving, caregiving, and stress-coping appeared to have a more positive influence on the caregivers' psychosocial wellbeing and a reduced use of healthcare resources by stroke survivors. Evidence on the effects of psychosocial interventions was limited. More RCTs of multifaceted psychoeducation programs are needed to further examine the optimal dose and format. To support caregivers across the stroke trajectory, the core skills of problem-solving and stress-coping should be included in the psychosocial interventions. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

  4. Mexican American Adolescents’ Family Caregiving: Selection Effects and Longitudinal Associations With Adjustment

    OpenAIRE

    East, Patricia L.; Weisner, Thomas S

    2009-01-01

    One hundred ten Mexican American adolescents (12 – 17 years) who provide infant care for their older sisters were studied to determine the effects of family caregiving responsibilities on adolescents’ adjustment. Controlling for prior adjustment and family context factors, providing many hours of caregiving predicted an increase in youths’ school absences and disciplinary problems. Frequent conflict surrounding caregiving was associated with increased stress and depression and lower school gr...

  5. Psychosocial Adjustment of Family Caregivers of Head and Neck Cancer Survivors

    Science.gov (United States)

    Ross, Stephanie; Mosher, Catherine E.; Ronis-Tobin, Victor; Hermele, Sandy; Ostroff, Jamie S.

    2013-01-01

    Purpose This study examined the psychosocial adjustment and needs of family caregivers of head and neck cancer survivors at 6–24 months post-treatment. Methods Family caregivers of head and neck cancer survivors (N = 89) completed mailed questionnaires that assessed demographic variables, mental health, quality of life, and practical and informational needs. Results Thirty-eight percent of caregivers reported moderate to high distress. However, quality of life scores for the entire sample (N = 89) were better than the scores reported in initial validation studies on caregivers of patients undergoing active cancer treatment. Greater time spent caregiving was associated with worse psychological well-being, but also more positive adaptation to caregiving. In addition, 39% of caregivers reported that all of their practical and informational needs were being met. Conclusions Findings suggest that research and clinical efforts are needed to address the psychosocial concerns of this population. PMID:19390870

  6. Positive changes among patients with advanced colorectal cancer and their family caregivers: a qualitative analysis.

    Science.gov (United States)

    Mosher, Catherine E; Adams, Rebecca N; Helft, Paul R; O'Neil, Bert H; Shahda, Safi; Rattray, Nicholas A; Champion, Victoria L

    2017-01-01

    This study assessed positive changes in patients with advanced colorectal cancer and their family caregivers following diagnosis. We compared self-reported positive changes within patient-caregiver dyads as well as self-reports and patient reports of positive changes in caregivers. Individual, semi-structured qualitative interviews were conducted with 23 patients with advanced colorectal cancer and 23 caregivers. A theoretical thematic analysis of interview transcripts was framed by posttraumatic growth theory. Patients and caregivers described five positive changes: closer relationships with others, greater appreciation of life, clarifying life priorities, increased faith, and more empathy for others. Additionally, only caregivers reported better health habits following the cancer diagnosis, and a minority of patients and caregivers reported no positive changes. In about half of cases, patients reported at least one positive change that was identical to that of their caregiver. However, in most cases, patient and caregiver reports of the caregiver's positive change were discrepant. Findings suggest that positive changes are a shared experience for many patient-caregiver dyads and obtaining both patient and caregiver reports of caregiver positive changes provides a more comprehensive understanding of their experience. Interventions may capitalise on positive changes to promote meaningful living in the context of advanced cancer.

  7. Processes of user participation among formal and family caregivers in home-based care for persons with dementia.

    Science.gov (United States)

    Larsen, Lill Sverresdatter; Normann, Hans Ketil; Hamran, Torunn

    2017-02-01

    Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was 'negotiating participation in decisions'. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients' legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

  8. Understanding Discrepancy in Perceptions of Values: Individuals with Mild to Moderate Dementia and Their Family Caregivers

    Science.gov (United States)

    Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.

    2011-01-01

    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…

  9. Effects of individual and family hardiness on caregiver depression and fatigue.

    Science.gov (United States)

    Clark, Patricia C

    2002-02-01

    Hardiness is defined as commitment to life, viewing change as challenge, and having control over one's life. Previous research suggests that hardiness is related to better outcomes in stressful situations. The effects of individual and family hardiness on depression and fatigue of caregivers of disabled older adults (DA) were examined using a descriptive, cross-sectional design. The sample was 67 caregivers of DA with high functional impairment. One-third of caregivers reported moderate to high fatigue, and 40% had scores indicating possible clinical depression. Memory and behavior problems of the DA were positively correlated with caregiver depression and fatigue. Family hardiness was negatively related to memory and behavior problems of the DA. Controlling for covariates, individual hardiness was negatively associated with depression and fatigue; coping strategies did not mediate the relationship. Caregivers with low individual and family hardiness had more depression than those high in both resources. Additional research is needed to determine the relevance of hardiness theory in caregiving research.

  10. Factors associated with stroke survivor behaviors as identified by family caregivers.

    Science.gov (United States)

    Gonzalez, Carmanny; Bakas, Tamilyn

    2013-01-01

    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 two 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 caregiver depressive symptoms, task difficulty, life changes, and threat appraisal (F[5, 88] = 10.82, p caregivers. © 2013 Association of Rehabilitation Nurses.

  11. Burden and associated pathologies in family caregivers of Alzheimer’s disease patients in Spain.

    Directory of Open Access Journals (Sweden)

    Vérez Cotelo N

    2015-06-01

    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.

  12. [Evaluation of guided conversation groups for family caregivers of dementia. Results of the GENA project in Mecklenburg-Vorpommern].

    Science.gov (United States)

    Haenselt, R; Danielzik, A; Waack, K

    2004-10-01

    The GeNA project (Gerontopsychiatric network of work with family caregivers Mecklenburg-Vorpommern) has focused basically on the support of family caregivers of demented old people in guided conversation groups along with setting up a supporting network for this target group within the framework of the Federal Ministry for Senior Citizens, Family and Youth model program "Future Structures of Old People's Welfare".The integrative counselling approach developed for the preservation and restoration of the family balance and for the reduction of care burden was investigated with regard to its effectiveness in case of meaningful indicators in a pre-post-design at ten locations. For the entire sample, the expected burden reductions were found only occasionally and with just a slight downward trend in the fields "physical exhaustion", "health trouble", "deficiency in the realm of social relations" and "utilization of professional support". There are only a few changes according to the measured personality traits out of the construct realm of filial maturity.A differentiating analysis of the caregivers' assessments defines two types of family caregivers (filial more mature vs. filial more immature caregivers) from the inquiry data of the beginning of group participation which differ from each other most significantly concerning the changes of interest during the progress of intervention:Whereas the emotional more independent family caregivers seem to profit less by the participation of this type of a guided conversation group, the caregivers, who show problematic filial patterns of ties with the care recipients to a higher degree, are able to use the participation for a distinct decrease of care burden. This contrary effect of group participation of the two types of personalities of caregivers can possibly be seen as a diagnostic indication for the selection of potential participants of similar group support offers. In view of the small sample size these results should be

  13. Reflections on methodological approaches and conceptual contributions in a program of caregiving research: development and testing of Wuest's theory of family caregiving.

    Science.gov (United States)

    Wuest, Judith; Hodgins, Marilyn J

    2011-02-01

    Caregiving by family members, particularly women, is a societal expectation that is intensifying in the context of an aging population and health care restructuring. Our program of caregiving research spans two decades, moving from inductive theory development using grounded theory methods to deductive theory testing. In this article, we reflect on the serendipitous development of this program of research methodologically and conceptually. We summarize the key conceptual contributions that the program has made to caregiving knowledge, particularly with respect to the past relationship between care recipient and caregiver, obligation to care, caregiver agency, and relationships between caregivers and the health care system.

  14. The economic burden of caregiving on families of children and adolescents with cancer: a population-based assessment.

    Science.gov (United States)

    Pagano, Eva; Baldi, Ileana; Mosso, Maria Luisa; di Montezemolo, Luca Cordero; Fagioli, Franca; Pastore, Guido; Merletti, Franco

    2014-06-01

    Childhood cancer represents a relevant economic burden on families. The preferred tool to investigate family expenditure is the retrospective questionnaire, which is subject to recall errors and selection bias. Therefore, in the present study the economic burden of caregiving on families of children and adolescents (0-19 years of age) with cancer was analysed using administrative data as an alternative to retrospective questionnaires. Incident cases of cancer diagnosed in children and adolescents in 2000-2005 (N = 917) were identified from the Piedmont Childhood Cancer Registry and linked to available administrative databases to identify episodes of care during the 3 years after diagnosis (N = 13,433). The opportunity cost of informal caregiving was estimated as the value of the time spent by one of the parents, and was assumed to be equal to the number of days during which the child received inpatient care, day-care or outpatient radiotherapy. Factors affecting the level of economic burden of caregiving on families were analysed in a multivariable model. The economic burden of caregiving increased when care was supplied at the Regional Referral Centre, or when treatment complexity was high. Families with younger children had a higher level of economic burden of caregiving. Leukaemia required a higher family commitment than any other cancer considered. Estimates of the economic burden of caregiving on families of children and adolescents with cancer derived from administrative data should be considered a minimum burden. The estimated effect of the covariates is informative for healthcare decision-makers in planning support programmes. © 2013 Wiley Periodicals, Inc.

  15. Age Effects on Cognitive and Physiological Parameters in Familial Caregivers of Alzheimer's Disease Patients.

    Science.gov (United States)

    Corrêa, Márcio Silveira; Giacobbo, Bruno Lima; Vedovelli, Kelem; Lima, Daiane Borba de; Ferrari, Pamela; Argimon, Irani Iracema de Lima; Walz, Julio Cesar; Bromberg, Elke

    2016-01-01

    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.

  16. Age Effects on Cognitive and Physiological Parameters in Familial Caregivers of Alzheimer's Disease Patients

    Science.gov (United States)

    Corrêa, Márcio Silveira; Giacobbo, Bruno Lima; Vedovelli, Kelem; de Lima, Daiane Borba; Ferrari, Pamela; Argimon, Irani Iracema de Lima; Walz, Julio Cesar

    2016-01-01

    Objectives 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. Method 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. Results 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. Discussion 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. PMID:27706235

  17. Survey on social support and demands for family caregivers of disabled elderly in Beijing Dongcheng District%北京市东城区失能老人家庭照顾者社会支持状况及需求调查研究

    Institute of Scientific and Technical Information of China (English)

    钱晨光; 徐薇; 杜娟

    2015-01-01

    Objective To survey the social support status and demands for family caregivers of the disabled elderly.Methods A cross-sectional survey based on convenience sampling was conducted among 779 disabled elderly and their family caregivers from May to June 2013 in five communities of Beijing Dongcheng District.Barthel index was used to measure the degree of functional impairment of the elderly.Self-rating Depression Scales (SDS) was used to evaluate depression symptoms of caregivers.Social Support Rating Scale (SSRS) and social support demand questionnaire were used to measure the social support status and social support demands of caregivers,respectively.Multiple linear regression analysis was used to analyze the influence factors of social support.Results Total 779 caregivers were identified and 744 caregivers completed the questionnaires with a valid response rate of 95.5%.Among 744 family caregivers the social support levels were low with an average SSRS score of 31.16 ± 6.86.There were significant differences in SSRS scores among caregivers of disabled elderly with different characteristics (age,married status and the Barthel index score) (all P < 0.05);and there were significant differences in SSRS scores among caregivers with different characteristics (age,educational level,married status,current employment,relationship with patients,caregiving time daily,subjective care burden,living with patients,number of caregivers and depression status) (all P < 0.05).Multiple linear regression analysis showed that the Barthel index score of the disabled elderly,the relationship with the elderly,depression status of the caregivers and the subjective care burden were correlated with the social support level of family caregivers (all P <0.05);the standard regression coefficients of above significant factors were 0.098,0.190,0.134 and 0.155,respectively.The social support demands of family caregivers were various;the average score was 2.44 ± 0.64,the top three

  18. Predictors of the depressive symptomatology of the family caregivers of Chinese stroke patients in Hong Kong.

    Science.gov (United States)

    Lau, C G; Tang, W K; Wong, K S; Mok, V; Ungvari, G S

    2012-05-01

    The aim of this cross-sectional study was to determine the socio-demographic and clinical factors associated with depressive symptoms in the family caregivers of Hong Kong Chinese stroke patients. One hundred and twenty-three patients at a stroke clinic and their family caregivers formed the study sample. The depressive symptoms of both the patients and their family caregivers were rated with the Chinese version of the 15-item Geriatric Depression Scale (GDS). Participants' socio-demographic data and clinical characteristics served as the independent variables in relation to the caregivers' GDS scores. Patients' and caregivers' somatic and psychological conditions were measured with 10 scales. In univariate analysis, caregivers' GDS scores were significantly correlated with certain of their characteristics [Modified Life Event Scale (MLES), Cumulative Illness Rating Scale (CIRS) and Lubben Social Network Scale (LSNS) scores, sex and being a housewife] and those of the patients (GDS score and being a housewife). Multiple regression analysis showed caregivers' MLES and CIRS scores and patients' GDS scores to be independent correlates of caregivers' GDS scores. Adverse events encountered by caregivers in the past 6 months, their current health problems and patients' depressive symptoms were found to be the principal factors associated with caregivers' depressive symptoms. © 2011 Blackwell Publishing.

  19. The Value of Telephone Support Groups among Ethnically Diverse Caregivers of Persons with Dementia

    Science.gov (United States)

    Bank, Adam L.; Arguelles, Soledad; Rubert, Mark; Eisdorfer, Carl; Czaja, Sara J.

    2006-01-01

    Purpose: Dementia caregiving is a rapidly growing public health problem. Logistical problems prevent many caregivers from utilizing available interventions. This article provides a demonstration of the usefulness of technology for conducting telephone-based support groups in ethnically diverse dementia caregivers. Design and Methods: Participants…

  20. Educational Support Group in Changing Caregivers' Psychological Elder Abuse Behavior toward Caring for Institutionalized Elders

    Science.gov (United States)

    Hsieh, Hsiu-Fang; Wang, Jing-Jy; Yen, Maiofen; Liu, Tzu-Ti

    2009-01-01

    Institutionalized elderly who are frail and dependent are vulnerable to be abused by overwhelmed caregivers especially caregiver psychological abusive behavior is a growing but hidden problem with few evidence-based interventions. The purpose of this study was to examine the effectiveness of an educational support group in alleviating caregiver's…

  1. Usage and design evaluation by family caregivers of a stroke intervention web site.

    Science.gov (United States)

    Pierce, Linda L; Steiner, Victoria

    2013-10-01

    Four of five families are affected by stroke. Many caregivers access the Internet and gather healthcare information from Web-based sources. The purpose of this descriptive evaluation was to assess the usage and design of the Caring∼Web site, which provides education/support for family caregivers of persons with stroke residing in home settings. Thirty-six caregivers from two Midwest states accessed this intervention in a 1-year study. The average participant was 54 years old, White, woman, and the spouse of the care recipient. In a telephone interview, four Web site questions were asked twice a month/bimonthly, and a 33-item survey at the conclusion of the study evaluated the Web site usage and design of its components. Descriptive analysis methods were used, and statistics were collected on the number of visits to the Web site. On average, participants logged on to the Web site 1-2 hours per week, although usage declined after several months for some participants. Participants positively rated the Web site's appearance and usability that included finding the training to be adequate. Web site designers can replicate this intervention for other health conditions.

  2. Health status assessment tool for the family member caregiver of patients with bipolar disorder: development and psychometric testing.

    Science.gov (United States)

    Shamsaei, Farshid; Kermanshahi, Sima Mohamad Khan; Vanaki, Zohreh; Hajizadeh, Ebrahim; Holtforth, Martin Grosse; Cheragi, Fatemeh

    2013-06-01

    The caregivers' health assessment requires the application of a valid instrument that provided based on their experiences about the health concept. The purpose of this study was to develop and test the psychometric properties of the health assessment tool for family member caregivers' of patients with bipolar disorder. This study utilized mixed research. The specific validation processes used were: content and face validity, construct validity using factor analysis, reliability and internal consistency using test-retest reliability and Cronbach's alpha correlation coefficient. The exploratory factor analysis revealed ten factors: safe life with peace, maintaining physical health, painful emotions, psychological tolerance, maintaining physical-psychological potency, families and relatives support, health care system support, moral-financial support, maintaining social relationships, and worry over the label. The internal consistency (Cronbach's alpha) was 95. Test-retest reliability of the questionnaire with interval time of two weeks was 0.93 (p Family caregivers' health assessment questionnaire with 75 items helped to determine family caregivers' health in different settings such as clinical settings, homes and research environments by health care providers. Copyright © 2013 Elsevier B.V. All rights reserved.

  3. Experiences of stigma and discrimination faced by family caregivers of people with schizophrenia in India.

    Science.gov (United States)

    Koschorke, Mirja; Padmavati, R; Kumar, Shuba; Cohen, Alex; Weiss, Helen A; Chatterjee, Sudipto; Pereira, Jesina; Naik, Smita; John, Sujit; Dabholkar, Hamid; Balaji, Madhumitha; Chavan, Animish; Varghese, Mathew; Thara, R; Patel, Vikram; Thornicroft, Graham

    2017-04-01

    Stigma associated with schizophrenia significantly affects family caregivers, yet few studies have examined the nature and determinants of family stigma and its relationship to their knowledge about the condition. This paper describes the experiences and determinants of stigma reported by the primary caregivers of people living with schizophrenia (PLS) in India. The study used mixed methods and was nested in a randomised controlled trial of community care for people with schizophrenia. Between November 2009 and October 2010, data on caregiver stigma and functional outcomes were collected from a sample of 282 PLS-caregiver dyads. In addition, 36 in-depth-interviews were conducted with caregivers. Quantitative findings indicate that 'high caregiver stigma' was reported by a significant minority of caregivers (21%) and that many felt uncomfortable to disclose their family member's condition (45%). Caregiver stigma was independently associated with higher levels of positive symptoms of schizophrenia, higher levels of disability, younger PLS age, household education at secondary school level and research site. Knowledge about schizophrenia was not associated with caregiver stigma. Qualitative data illustrate the various ways in which stigma affected the lives of family caregivers and reveal relevant links between caregiver-stigma related themes ('others finding out', 'negative reactions' and 'negative feelings and views about the self') and other themes in the data. Findings highlight the need for interventions that address both the needs of PLS and their family caregivers. Qualitative data also illustrate the complexities surrounding the relationship between knowledge and stigma and suggest that providing 'knowledge about schizophrenia' may influence the process of stigmatisation in both positive and negative ways. We posit that educational interventions need to consider context-specific factors when choosing anti-stigma-messages to be conveyed. Our findings suggest

  4. Family support to elderly with commitment of functionality: a family perspective

    OpenAIRE

    Reis,Luciana Araújo dos; Trad, Leny Alves Bonfim

    2016-01-01

    This study aims to characterize the family support the elderly with impaired functional capacity from the perspective of the caregiver. The study was conducted in four health units in Jequié-BA. Data were collected through semi-structured interview and questionnaire to the families. Through content analysis yielded the following categories: significance of impairment of functional capacity; family relationship before the impairment of functional capacity; family relationship after the impairm...

  5. PalliPA: How can general practices support caregivers of patients at their end of life in a home-care setting? A study protocol

    Directory of Open Access Journals (Sweden)

    Hermann Katja

    2012-05-01

    Full Text Available Abstract Background The care of patients with a life-threatening, progressive and far advanced illness in a home-care setting requires appropriate individual care and requires the active support of family caregivers. General practice teams are usually the primary care givers and first contact and are best placed to offer support to family caregivers and to recognise and respond to the burden of care giving on family members. The aim of this project is to develop a best practice model for engaging with and supporting family caregivers. Findings The project is framed as an exploratory trial for a subsequent implementation study, covering phases 0, I and II of the MRC (Medical Research Council framework for development, design and evaluation of complex interventions. The project is a multi-method procedure and has two phases. In the first phase, which has already been completed, we used a reflective practice procedure where general practice teams were asked about how they currently deal with family caregivers. In the second phase, a participatory action research approach aims to improve identification and response to when support is necessary for family caregivers. Ten participating general practice teams each enrol 40 eligible patients and their family caregiver, to identify structures and tools feasible for use in their practice. Standardised self-reported questionnaires (Burden Scale for Family Caregivers and Quality of Life Questionnaire Core 15 Palliative are being applied at study inclusion (prior to or during the implementation period and after 6 and 12 months to explore implementation effects. Qualitative assessment of general practice teams’ experiences will be triangulated with the quantitative evaluation of the implementation. Discussion This two-step approach, which is appropriate to primary palliative care in the German health care context, will enable general practice teams to develop feasible, acceptable and successful strategies

  6. Health Consequences to Immigrant Family Caregivers in Canada

    Directory of Open Access Journals (Sweden)

    Suwal, Juhee Varacharya

    2010-01-01

    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

  7. The influence of patient, caregiver, and family factors on symptoms of anxiety and depression in children and adolescents with intractable epilepsy.

    Science.gov (United States)

    Puka, Klajdi; Widjaja, Elysa; Smith, Mary Lou

    2017-02-01

    The objective was to evaluate the association of caregiver and family factors with symptoms of anxiety and depression in children and adolescents with medically refractory localization-related epilepsy (i.e., failed at least two epilepsy medications). Forty-four children (ages 6-11years) and 65 adolescents (ages 12-18years) and their parents participated in this multicentered, observational, cross-sectional study. Univariable and multivariable linear regressions were used to evaluate the influence of multiple patient, caregiver, and family characteristics on self-reported symptoms of anxiety and depression in the children and adolescents. Among children, depressive symptoms were associated with a lower proportion of life with seizures (β=.344, p=.022), caregiver depression (β=.462, p=.002), poorer family relationships (β=.384, p=.010), and poorer family mastery and social support (β=.337, p=.025); in multivariable analysis, proportion of life with epilepsy and parental depression remained significant. No significant predictors of anxiety were found among children. Among adolescents, depressive symptoms were associated with caregiver unemployment (β=.345, p=.005) and anxiety (β=.359, p=.003), low household income (β=.321, p=.012), poorer family mastery and social support (β=.334, p=.007), and greater family demands (β=.326, p=.008); in multivariable analysis, caregiver unemployment and anxiety remained significant. Greater anxiety symptoms among adolescents were associated with females (β=.320, p=.009) and caregiver depression (β=.246, p=.048) and anxiety (β=.392, p=.001) and poorer family mastery and social support (β=.247, p=.047); in multivariable analysis, female sex and caregiver anxiety remained significant. These findings highlight the central role of caregiver psychopathology, which is amenable to intervention, on children and adolescents' symptoms of anxiety and depression. Addressing caregiver psychopathology may improve children and

  8. Liminality as a conceptual frame for understanding the family caregiving rite of passage: an integrative review.

    Science.gov (United States)

    Gibbons, Susanne W; Ross, Alyson; Bevans, Margaret

    2014-10-01

    Family caregiving is a significant rite of passage experienced by family caregivers of individuals with protracted illness or injury. In an integrative review of 26 studies, we characterized family caregiving from the sociocultural perspective of liminality and explored associated psychosocial implications. Analysis of published evidence on this dynamic and formative transition produced a range of themes. While role ambiguity resolved for most, for others, uncertainty and suffering continued. The process of becoming a caregiver was transformative and can be viewed as a rebirth that is largely socially and culturally driven. The transition to family caregiving model produced by this review provides a holistic perspective on this phenomenon and draws attention to aspects of the experience previously underappreciated. Published 2014. This article is a U.S. Government work and is in the public domain in the USA. Published 2014. This article is a U.S. Government work and is in the public domain in the USA.

  9. Seeking Medical Information Using Mobile Apps and the Internet: Are Family Caregivers Different from the General Public?

    Science.gov (United States)

    Kim, Hyunmin; Paige Powell, M; Bhuyan, Soumitra S; Bhuyan, Soumitra Sudip

    2017-03-01

    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.

  10. Compassion Fatigue: An Application of the Concept to Informal Caregivers of Family Members with Dementia

    Directory of Open Access Journals (Sweden)

    Jennifer R. Day

    2011-01-01

    Full Text Available Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understanding compassion fatigue in the informal caregiver population. Limitations of the model when applied to this population were identified as traumatic memories and the emotional relationship between parent and child, suggesting areas for future research. Conclusions. Research is needed to better understand the impact of compassion fatigue on informal caregivers through qualitative interviews, to identify informal caregivers at risk for compassion fatigue, and to provide an empirical basis for developing nursing interventions for caregivers experiencing compassion fatigue.

  11. Compassion fatigue: an application of the concept to informal caregivers of family members with dementia.

    Science.gov (United States)

    Day, Jennifer R; Anderson, Ruth A

    2011-01-01

    Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understanding compassion fatigue in the informal caregiver population. Limitations of the model when applied to this population were identified as traumatic memories and the emotional relationship between parent and child, suggesting areas for future research. Conclusions. Research is needed to better understand the impact of compassion fatigue on informal caregivers through qualitative interviews, to identify informal caregivers at risk for compassion fatigue, and to provide an empirical basis for developing nursing interventions for caregivers experiencing compassion fatigue.

  12. Impact of an Educational Support Group on Family Participants Who Take Care of Their Schizophrenic Relatives.

    Science.gov (United States)

    Abramowitz, Ira A.; Coursey, Robert D.

    1989-01-01

    Compared participants (N=24) in six-session educational support group offering family caregivers information about schizophrenia, training in problem-solving skills for managing patient behavior, and greater access to social support and community resources with matched controls (N=24). Participant caregivers reported significantly reduced anxiety…

  13. Separation and Divorce: Supporting Children and Families in Times of Stress.

    Science.gov (United States)

    Gray, Barbara

    2001-01-01

    Discusses how teachers/caregivers can support children and families during marital separation and divorce. Describes the impact of divorce on young children. Offers eight suggestions for teachers/caregivers, including providing security and support, helping children feel competent and in control, understanding why children may have behavior…

  14. Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study

    Directory of Open Access Journals (Sweden)

    Awadalla Abdel W

    2008-10-01

    Full Text Available Abstract Background Research interest in the quality of life (QOL of persons with multiple sclerosis (MS has been spurred by the need to broaden outcome measures. Far less of this interest has been directed at the family caregivers, who bear most of the burden of care. The objectives of the study were: First, to compare the subjective QOL of family caregivers of persons with relapsing remitting and progressive MS, with those of a matched general population sample and caregivers of diabetes and psychiatric patients. Second, to assess the relationship of QOL with caregiver attitudes to MS and patient's variables. Methods Consecutive MS clinic attendees were assessed with the 26 – item WHOQOL Instrument, and for depression and disability. Similarly, caregivers independently rated their own QOL as well as their impression of patients' QOL and attitudes to patients' illness. Results The 170 caregivers, mean age 35.7 years, had no significant diagnostic differences in QOL domain scores and attitudes to MS. Caregivers had significantly lower QOL than the general population control group for five out of six domains and the general facet (P Conclusion Caregivers need specific attention if they are less educated, unemployed, afraid of having MS and caring for patients with longer duration of illness and less education. In particular, attention to patients' depression and disability could improve caregivers' QOL. Caregivers need specific programs to address fear of having MS, negative attitudes to illness and their unmet needs.

  15. Examining trust in health professionals among family caregivers of nursing home residents with advanced dementia.

    Science.gov (United States)

    Boogaard, Jannie A; Werner, Perla; Zisberg, Anna; van der Steen, Jenny T

    2017-07-20

    In a context of increasing emphasis on shared decision-making and palliative care in dementia, research on family caregivers' trust in health professionals in advanced dementia is surprisingly scant. The aim of the present study was to assess trust in nursing home health professionals of family caregivers of nursing home residents with advanced dementia, and possible correlates, such as family caregivers' satisfaction, involvement in care, care burden and patients' symptom burden. A cross-sectional study was carried out using structured questionnaires administered through the telephone. Generalized estimating equation analyses with adjustment for nursing home clustering were applied to assess the most important associations with family caregivers' trust. A total of 214 family caregivers of persons with dementia residing in 25 nursing homes participated in the study. The majority of the participants (67%) were women and adult children (75%). The majority of the family caregivers trusted physicians, nurses and nurses' aides at a moderate-to-high level. Approximately half to one-third reported moderate-to-low levels of trust. Higher levels of trust were associated with more positive care outcomes, such as higher family satisfaction with care and more positive evaluations of physician-family communication. The present study showed the importance of family caregivers trusting nursing home health professionals for their experiences as caregivers. Although causation cannot be established, increased family caregivers' trust in nursing home health professionals by improving communication and exchange of information might provide a good basis for providing optimal palliative care in advanced dementia. Geriatr Gerontol Int 2017; ••: ••-••. © 2017 Japan Geriatrics Society.

  16. Long-term impact of stroke on family caregiver well-being

    Science.gov (United States)

    Roth, David L.; Hovater, Martha; Clay, Olivio J.

    2015-01-01

    Objective: Three-year changes in well-being were studied among family caregivers of an epidemiologically derived sample of stroke survivors from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study and compared to matched noncaregivers. Methods: Family caregivers of REGARDS participants who experienced a stroke event completed telephone interviews assessing depressive symptoms, mental and physical health quality of life (QOL), life satisfaction, and leisure satisfaction at approximately 9, 18, 27, and 36 months after the stroke (n = 235). For each stroke caregiver, a family member of a stroke-free REGARDS participant was enrolled as a matched noncaregiving control (n = 235) and completed similar interviews. Results: Multilevel longitudinal models found that caregivers showed poorer well-being at 9 months poststroke than controls on all measures except physical health QOL. Significant differences were sustained for 22 months after the stroke event for depressive symptoms, 31 months for mental health QOL, and 15 months for life satisfaction. For leisure satisfaction, differences were still significant at 36 months poststroke. Caregiving effects were similar across race and sex. Conclusions: Stroke caregiving is associated with persistent psychological distress, but life satisfaction, depression, and mental health QOL became comparable to noncaregivers by 3 years after stroke. Caregiver leisure satisfaction was chronically lower than in noncaregivers. Intervention for stroke caregivers should recognize both the strains faced by caregivers and their capacity for successful coping over time. PMID:25740862

  17. Quality of Life among Family Caregivers of Patients on Hemodialysis and its Relevant Factors: A Systematic Review

    Directory of Open Access Journals (Sweden)

    Seyedeh Azam Sajadi

    2017-07-01

    Full Text Available Background: Family caregivers are considered as hidden patients experiencing physical and mental disorders. This affects the quality of not only their lives but also the health care provided to patients.This study aimed to investigate the quality of life (QOL and its related factors among the caregivers of patients undergoing hemodialysis. Methods: This systematic review was conducted based on the eight-step guidelines presented by the York University. The databases relevant to the medical field including Nursing and Allied Health, Web of Science, Scopus, Pubmed, Embase, PsycINFO and Psychology Library were used. Finally, 12 articles observing the inclusion criteria and with regard to the research questions were found. The data obtained from these articles were summarized, classified, and analyzed. Results: QOL among Family Caregivers of Patients on Hemodialysis is low, compared to the general population; however, their QOL is higher than the patients under their care. Factors relevant to the QOL for caregivers including age, gender, perceived social support, perceived burden of care, affliction with other diseases (lupus, hypertension, hypothyroidism and depression, intellectual understanding of the limitations of the patient’s disease in their daily life, employment of adaptation strategies, better marital relationships, accepting self and family relationship with the patient (mother and wife. Furthermore, the factors associated with care takers affecting the quality of caregivers’ lives were age, QOL and the type of treatment. Conclusions: Caregivers of patients undergoing hemodialysis enjoyed low QOL. Since there is a direct relationship between family caregivers’ quality and patients’ QOL, health care system and health policy makers should pay more attention to family caregivers.

  18. Caregiver Positive and Negative Appraisals: Effects of the National Alliance on Mental Illness Family-to-Family Intervention.

    Science.gov (United States)

    Toohey, Michael J; Muralidharan, Anjana; Medoff, Deborah; Lucksted, Alicia; Dixon, Lisa

    2016-02-01

    The 3-month-long Family-to-Family intervention (FTF) has been shown to increase empowerment, knowledge, and coping and to reduce distress among caregivers of people with serious mental illness. We sought to determine the influence of FTF on caregivers' appraisal of their caregiving experience. Family members of individuals with mental illness who sought enrollment in FTF (n = 318) were randomly assigned to FTF or a waitlist condition. Positive and negative appraisals were measured using the Experiences of Caregiving Inventory at baseline and 3 months later; 259 participants completed both assessments. Regression analyses found significant increases in positive appraisal but no significant decreases in negative appraisals for those in the FTF condition. In the context of overall benefits from taking FTF, these relationships reflect the FTF curriculum's emphasis on positive coping (e.g., strength and empowerment) and the potential value of strategies that help caregivers increase positive appraisal.

  19. What makes family caregivers happy during the first 2 years post stroke?

    Science.gov (United States)

    Cameron, Jill I; Stewart, Donna E; Streiner, David L; Coyte, Peter C; Cheung, Angela M

    2014-04-01

    This study aimed to identify aspects of the caregiving situation contributing to family caregivers' psychological well-being. Longitudinal cohort study with structured quantitative interviews 1, 3, 6, and 12 months post stroke. A subset of participants also completed surveys 18 and 24 months post stroke. Participants included individuals hospitalized for their first stroke and their family caregivers. Psychological well-being was assessed by the Positive Affect Scale. A total of 399 stroke survivor, caregiver dyads completed the 1-year follow-up and 80 dyads completed the second year of follow-up. Using mixed effects modeling for longitudinal data, caregivers reported more psychological well-being when they provided more assistance to stroke survivors who had fewer symptoms of depression, better cognitive functioning, and who had more severe strokes. In addition, caregivers who maintained participation in valued activities had more mastery, gained personally providing care, were in better physical health, were older, and were from Quebec reported more psychological well-being. Caregivers followed for a second year post stroke reported better psychological well-being when caring for stroke survivors with fewer symptoms of depression and more severe strokes and when the caregivers had a greater sense of mastery and gained more personally providing care. Our findings contribute to the caregiver intervention development literature by identifying aspects of the caregiving situation that are associated with positive outcomes. Incorporating specific aspects, for example, strategies to enhance caregiver mastery into programs and services offered to caregivers may enhance their positive experiences with providing care and ultimately enhance the sustainability of the caregiving situation.

  20. Values and Preferences of Individuals with Dementia: Perceptions of Family Caregivers over Time

    Science.gov (United States)

    Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.

    2013-01-01

    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…

  1. Valuing the Invaluable: 2011 Update, The Growing Contributions and Costs of Family Caregiving

    Data.gov (United States)

    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...

  2. The family as patient and caregiver : Adjustment of the ethical agenda about parental organ-donation

    NARCIS (Netherlands)

    Knibbe, Mare; Maeckelberghe, Els; Verkerk, Marian; Weimar, W; Bos, MA; Busschbach, JJ

    2008-01-01

    The family of a child in need of a transplant has a double role. It has a role of patient on the one hand, receiving professional care, and of caregiver on the other hand, sharing responsibility with the medical caregivers. In order to reflect on the complex intertwining of responsibilities connecte

  3. Effect of acculturation and mutuality on family loyalty among Mexican American caregivers of elders.

    Science.gov (United States)

    Kao, Hsueh-Fen S; An, Kyungeh

    2012-06-01

    Informal family care for elders is conventional in Mexican American communities despite increasing intergenerational gaps in filial values. In our study, we explored whether acculturation and dyadic mutuality, as perceived by Mexican American family caregivers, explain the caregivers' expectations of family loyalty toward elderly relatives. A nonexperimental, correlational design with convenience sampling was used in El Paso, Texas, from October 2007 to January 2008. Three bilingual promotoras collected data from 193 Mexican American adult caregivers of community-dwelling elders using three scales designed for Mexican Americans: the Acculturation Rating Scale for Mexican Americans II-Short Form, the Mutuality Scale, and the Expectations of Family Loyalty of Children Toward Elderly Relatives Scale. Confirmatory factor analysis was used to analyze the data. Acculturation had a marginal effect (r = .21, p loyalty toward elderly relatives. There was no significant correlation between acculturation and mutuality (r = .05). Although Mexican American caregivers with strong Mexican orientation may have high expectations of family loyalty toward elderly relatives, mutuality exhibits more significant effects on expectations. Among Mexican Americans, mutuality between the caregiving dyad, as perceived by caregivers, may be a better predictor of filial values than caregivers' acculturation alone. It may be useful to incorporate the dual paradigm of acculturation and mutuality into immigrant family care for elderly relatives. © 2012 Sigma Theta Tau International.

  4. More caregiving, less working: caregiving roles and gender difference.

    Science.gov (United States)

    Lee, Yeonjung; Tang, Fengyan

    2015-06-01

    This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments. © The Author(s) 2013.

  5. A family-based model to predict fear of recurrence for cancer survivors and their caregivers.

    Science.gov (United States)

    Mellon, Suzanne; Kershaw, Trace S; Northouse, Laurel L; Freeman-Gibb, Laurie

    2007-03-01

    Although fear of cancer recurrence is a great concern among survivors and their families, few studies have examined predictors of fear of recurrence. The purpose of this study was to identify factors associated with fear of recurrence in a population-based sample (N = 246) and determine if survivors and family caregivers influenced one another's fear of recurrence. A family framework guided the study and analyses included multilevel modeling using the Actor-Partner Interdependence Model. Results indicated that survivors and family caregivers influenced each other's fear of recurrence and that caregivers had significantly more fear of recurrence than survivors. More family stressors, less positive meaning of the illness, and age were related to elevated fear of cancer recurrence for both survivors and caregivers.

  6. Shaping mutuality: nurse-family caregiver interactions in caring for older people with depression.

    Science.gov (United States)

    Jeon, Yun-Hee

    2004-06-01

    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.

  7. Does type of disability make a difference in affiliate stigma among family caregivers of individuals with autism, intellectual disability or physical disability?

    Science.gov (United States)

    Werner, S; Shulman, C

    2015-03-01

    Studies have shown that beyond public and self stigma, stigma can also impact family members. Only scant research has examined the internalised aspects of stigma, known as affiliate stigma, among family caregivers of individuals with disabilities. This study examined affiliate stigma among family caregivers of individuals with developmental disabilities via a comparison between caregivers of individuals with intellectual disabilities (ID), autism spectrum disorders (ASD) and physical disabilities (PD) in Israel. Family caregivers (n = 171) of individuals with developmental disabilities, mainly ID (22.4%), ASD (32.9%) and PD (27.1%), completed a self-report structured questionnaire including the Affiliate Stigma Scale and background variables. Results supported a one-factor structure for the Affiliate Stigma Scale. Overall, affiliate stigma was relatively low in this sample, but was found to be higher among caregivers of individuals with ASD when compared with caregivers of individuals with ID or PD. Findings from this study point to the importance of supporting caregivers of individuals with ASD to decrease their feelings of stigma. It is also important to further develop scales measuring affiliate stigma in order to capture the multi-dimensional nature of the concept. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  8. Family caregivers of cancer patients: perceived burden and symptoms during the early phases of cancer treatment.

    Science.gov (United States)

    Stenberg, Una; Cvancarova, Milada; Ekstedt, Mirjam; Olsson, Mariann; Ruland, Cornelia

    2014-01-01

    This study investigated levels of symptoms, caregiver burden, and changes over time in 278 family caregivers (FC) of cancer patients. FCs experienced high levels of depressive symptoms and sleep disturbance, low levels of fatigue, and low to moderate levels of caregiver burden, yet these symptoms remained relatively stable over time. Being female and not being employed were factors associated with an increased risk of symptoms and caregiver burden. The understanding evolving from this study can enhance social- and health care professionals' awareness of FCs' challenging situation and the potential impact this has on the FCs' ability to provide care to the patient.

  9. Caregiver Stress and the Patient With Dementia.

    Science.gov (United States)

    Sanders, Amy E

    2016-04-01

    Informal caregivers (often, but not exclusively, family members) are essential to the clinical care of a patient with dementia. Most caregivers are untrained and unpaid. As a result, caregivers often experience stress caused by the caregiving experience; they are the "invisible second patients" in dementia care. Clinicians can help caregivers by supporting them in their role and by referring them to additional resources for support.

  10. Partners Plus: Families and Caregivers in Partnerships. Model Demonstration. Final Report.

    Science.gov (United States)

    Garland, Corrine W.; Frank, Adrienne; Ownby, Lisa L.

    This final report discusses the activities and outcomes of Partners Plus: Families and Caregivers in Partnerships, a model demonstration project designed to expand respite care options for families of children (birth to 8 years old) with disabilities. The program uses a natural and family-centered model that involves families in the design,…

  11. 38 CFR 52.71 - Participant and family caregiver responsibilities.

    Science.gov (United States)

    2010-07-01

    ... caregiver responsibilities. 52.71 Section 52.71 Pensions, Bonuses, and Veterans' Relief DEPARTMENT OF VETERANS AFFAIRS (CONTINUED) PER DIEM FOR ADULT DAY HEALTH CARE OF VETERANS IN STATE HOMES Standards § 52... the participant and caregiver at the time of the intake screening. The Statement of responsibilities...

  12. An Evaluation of a Continuing Education Program for Family Caregivers of Ventilator-Dependent Children with Spinal Muscular Atrophy (SMA

    Directory of Open Access Journals (Sweden)

    Deborah S. Boroughs

    2017-04-01

    Full Text Available Until 25 years ago, there were limited options for long-term mechanical ventilation of children, and the majority of children were cared for in hospitals. However, with improving technology, the pediatric intensive care unit has moved from the hospital to a home setting, as children with increasingly complex healthcare needs are now often cared for by family members. One of the most complex care conditions involves ventilator and tracheostomy support. Advanced respiratory technologies that augment natural respiratory function prolong the lives of children with respiratory compromise; however, this care often comes with serious risks, including respiratory muscle impairment, respiratory failure, and chronic pulmonary disease. Both non-invasive assisted ventilation and assisted ventilation via tracheostomy can prolong survival into adulthood in many cases; however, mechanical ventilation in the home is a high-stakes, high risk intervention. Increasing complexity of care over time requires perpetual skill training of family caregivers that is delivered and supported by professional caregivers; yet, opportunities for additional training outside of the hospital rarely exist. Recent data has confirmed that repetitive caregiver education is essential for retention of memory and skills in adult learners. This study analyzes the use of continued education and training in the community for family caregivers of ventilator-dependent children diagnosed with spinal muscular atrophy (SMA.

  13. An Evaluation of a Continuing Education Program for Family Caregivers of Ventilator-Dependent Children with Spinal Muscular Atrophy (SMA).

    Science.gov (United States)

    Boroughs, Deborah S

    2017-04-29

    Until 25 years ago, there were limited options for long-term mechanical ventilation of children, and the majority of children were cared for in hospitals. However, with improving technology, the pediatric intensive care unit has moved from the hospital to a home setting, as children with increasingly complex healthcare needs are now often cared for by family members. One of the most complex care conditions involves ventilator and tracheostomy support. Advanced respiratory technologies that augment natural respiratory function prolong the lives of children with respiratory compromise; however, this care often comes with serious risks, including respiratory muscle impairment, respiratory failure, and chronic pulmonary disease. Both non-invasive assisted ventilation and assisted ventilation via tracheostomy can prolong survival into adulthood in many cases; however, mechanical ventilation in the home is a high-stakes, high risk intervention. Increasing complexity of care over time requires perpetual skill training of family caregivers that is delivered and supported by professional caregivers; yet, opportunities for additional training outside of the hospital rarely exist. Recent data has confirmed that repetitive caregiver education is essential for retention of memory and skills in adult learners. This study analyzes the use of continued education and training in the community for family caregivers of ventilator-dependent children diagnosed with spinal muscular atrophy (SMA).

  14. Perceived burden of care and reported coping strategies and needs for family caregivers of people with mental disorders in Zimbabwe

    Directory of Open Access Journals (Sweden)

    Bazondlile D. Marimbe

    2016-02-01

    Full Text Available Background: Mental health service resources are inadequate in low-income countries, and families are frequently expected to provide care for their relative with a mental disorder. However, research on the consequences of care giving has been limited in low-income countries, including Zimbabwe.Objective: The study explored the perceived impact of mental illness, reported coping strategies and reported needs of family members of persons diagnosed with bipolar affective disorder or schizophrenia attending a psychiatric hospital in Harare, Zimbabwe.Methods: A purposive sample of 31 family members participated in in-depth interviews and focus group discussions using standardized study guides. Participants were also screened for Common Mental Disorders (CMD using the 14-item Shona Symptom questionnaire (SSQ. Qualitative data were analyzed thematically. Statistical Package for Social Sciences (SPSS version 16 was used for quantitative data analysis.Results: Caregivers experienced physical, psychological, emotional, social and financial burden associated with care giving. They used both emotion-focused and problem-focused coping strategies depending on the ill family members’ behaviours. Seeking spiritual assistance emerged as their most common way of coping. Twenty one (68% of the caregivers were at risk of CMD and were referred to a psychiatrist for further management. Caregivers required support from health care professionals to help them cope better.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.

  15. Military Caregivers: Cornerstones of Support for Our Nation’s Wounded, Ill, and Injured Veterans

    Science.gov (United States)

    2013-01-01

    903; van Ryn, Sanders et al., 2011; M. S. Hinojosa and M. Rittman, “Association Between Health Education Needs and Stroke Caregiver Injury...REPORT DATE 2013 2. REPORT TYPE 3. DATES COVERED 00-00-2013 to 00-00-2013 4. TITLE AND SUBTITLE Military Caregivers : Cornerstones of Support...catastrophic wounds. The nature of many of their wounds, however, means some require long-term care- giving support. Those caregivers often toil in relative

  16. Parental psychopathology and treatment outcome for anxious youth: Roles of family functioning and caregiver strain

    Science.gov (United States)

    Schleider, Jessica L.; Ginsburg, Golda S.; Keeton, Courtney P.; Weisz, John R.; Birmaher, Boris; Kendall, Phillip C.; Piacentini, John; Sherrill, Joel; Walkup, John T.

    2014-01-01

    Objective Research has examined the effects of parental psychopathology, family functioning, and caregiver strain on treatment response in anxious youths. Although these variables have shown individual links to youth treatment response, theoretical models for their combined effects remain unexplored. This study tested the hypothesis that improvements in family functioning and reductions in caregiver strain explained the effects of parental psychopathology on youth treatment outcome in an anxiety treatment trial. Method A multiple mediation technique was used to test the proposed model across independent evaluator (IE), parent, and youth informants in 488 youths, aged 7–17 years (50% female; mean age 10.7) meeting DSM-IV-TR criteria for social phobia, separation anxiety, and/or generalized anxiety disorder. Youths were randomized to receive 12 weeks of cognitive-behavioral treatment (Coping Cat), medication (sertraline), their combination, or a pill placebo. At pre- and post-treatment, parents completed self-report measures of global psychopathology symptoms, family functioning, and caregiver strain; parents, youths, and IEs rated youths’ anxiety symptom severity. Results Changes in family functioning and caregiver strain jointly explained relations between parental psychopathology and reductions in youth anxiety. Specifically, across IE and parent informants, families with higher pre-treatment parental psychopathology showed more improvement in family functioning and caregiver strain, which in turn predicted greater youth anxiety reductions. Further, higher pre-treatment parental psychopathology predicted greater caregiver strain reductions, and in turn, greater youth anxiety reductions, based on youths’ reports of their own anxiety. Conclusions Findings suggest that improvements in family functioning and reductions in caregiver strain can influence treatment outcomes for anxious youths, especially among youths with more distressed parents. Public health

  17. Death with dignity from the perspective of the surviving family: a survey study among family caregivers of deceased older adults.

    Science.gov (United States)

    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

    2013-07-01

    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) To assess the prevalence of death with dignity in older adults from the perspective of family caregivers, (2) to determine factors that diminish dignity during the dying phase according to family caregivers, and (3) to identify physical, psychosocial, and care factors associated with death with dignity. A survey study with a self-administered questionnaire. Family caregivers of 163 deceased older (>55 years of age) adults ("patients") who had participated in the Longitudinal Aging Study Amsterdam. Of the family caregivers, 69% reported that their relative had died with dignity. Factors associated with a dignified death in a multivariate regression model were patients feeling peaceful and ready to die, absence of anxiety and depressive mood, presence of fatigue, and a clear explanation by the physician of treatment options during the final months of life. The physical and psychosocial condition of the patient in combination with care factors contributed to death with dignity from the perspective of the family caregiver. The patient's state of mind during the last phase of life and clear communication on the part of the physician both seem to be of particular importance.

  18. Advantages and Challenges: The Experience of Geriatrics Health Care Providers as Family Caregivers.

    Science.gov (United States)

    Wohlgemuth, Clare M; Auerbach, Heidi P; Parker, Victoria A

    2015-08-01

    Very little is known about family caregivers who are also geriatrics health care professionals. This exploratory study examines the dual roles of such professionals, the impact of their geriatrics expertise on the care of family members, and the influence of those caregiver experiences on their clinical practice. The research team recruited 16 geriatrics health care professionals who participated in 60- to 90-min individual interviews, based on a semistructured guide. Questions explored participants' dual experiences as geriatrics professionals and as family caregivers. Interviews were audio recorded, transcribed, and analyzed using qualitative data analysis software. Using a thematic analysis approach, the authors identified recurring themes, coding responses into both major themes and subthemes. The authors found 3 major themes: (a) dual role advantages and disadvantages, (b) emotional impact of dual roles, and (c) professional impact of family caregiving. Participants reported their own geriatrics expertise provided both advantages and disadvantages in caring for their older family members. Although their expertise introduced a significant emotional intensity to their personal caregiving experiences, those experiences positively influenced their professional insight, empathy, and advocacy for the caregivers of their own patients. In addition to the well-known burdens of caregiving, a further set of complex stressors is imposed on geriatrics health care professionals serving as family caregivers. The challenges they face despite their expertise also highlight critical challenges facing all caregivers. © The Author 2013. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  19. Compassion Fatigue: An Application of the Concept to Informal Caregivers of Family Members with Dementia

    OpenAIRE

    2011-01-01

    Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understandi...

  20. Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most?

    Science.gov (United States)

    van den Heuvel, Elisabeth T P; Witte, Luc P de; Stewart, Roy E; Schure, Lidwien M; Sanderman, Robbert; Meyboom-de Jong, Betty

    2002-08-01

    In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers' active coping and knowledge, reducing caregivers' strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.

  1. Prognostic factors of effectiveness of a support programme for caregivers of dementia patients

    NARCIS (Netherlands)

    Vernooij-Dassen, M.J.F.J.; Lamers, C.; Bor, J.H.J.; Felling, A.J.A.; Grol, R.P.T.M.

    2000-01-01

    In a randomized controlled study, positive effects were found of a support program for caregivers of dementia patients. The aim of this study is to identify in a secondary analysis the prognostic factors of success of the support program by comparing characteristics of patients and primary caregiver

  2. Linking family cohesion and flexibility with expressed emotion, family burden and psychological distress in caregivers of patients with psychosis: A path analytic model.

    Science.gov (United States)

    Koutra, Katerina; Simos, Panagiotis; Triliva, Sofia; Lionis, Christos; Vgontzas, Alexandros N

    2016-06-30

    The present study aimed to evaluate a path analytic model accounting for caregivers' psychological distress that takes into account perceived family cohesion and flexibility, expressed emotion and caregiver's burden associated with the presence of mental illness in the family. 50 first-episode and 50 chronic patients diagnosed with schizophrenia or bipolar disorder (most recent episode manic severe with psychotic features) recruited from the Inpatient Psychiatric Unit of the University Hospital of Heraklion, Crete, Greece, and their family caregivers participated in the study. Family functioning was assessed in terms of cohesion and flexibility (FACES-IV), expressed emotion (FQ), family burden (FBS) and caregivers' psychological distress (GHQ-28). Structural equation modelling was used to evaluate the direct and indirect effects of family dynamics on caregivers' psychological distress. The results showed that neither family cohesion nor family flexibility exerted significant direct effects on caregivers' psychological distress. Instead, the effect of flexibility was mediated by caregivers' criticism and family burden indicating an indirect effect on caregivers' psychological distress. These results apply equally to caregivers of first episode and chronic patients. Family interventions aiming to improve dysfunctional family interactions by promoting awareness of family dynamics could reduce the burden and improve the emotional well-being of family caregivers.

  3. Religious Coping in Caregivers of Family Members With Dementia.

    Science.gov (United States)

    Rathier, Lucille A; Davis, Jennifer Duncan; Papandonatos, George D; Grover, Christine; Tremont, Geoffrey

    2015-12-01

    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.

  4. Psychometric properties and relations with coping and family strain of the Health Services and Caregiver Experience questionnaire (HSCE): an outcome measure of informal caregivers' experience for inpatient care in Italy.

    Science.gov (United States)

    Coluccia, Anna; Ferretti, Fabio; Fagiolini, Andrea; Pozza, Andrea

    2017-07-17

    In the last decade, the number of patients supported by informal caregivers has substantially increased. In the Italian healthcare context, informal caregivers' experience of care is a new under-recognized construct, and no assessment tool is available. Measuring caregivers' experience is important since in Italy the relationship between doctors and patients/relatives is still considered asymmetrical. The current study presented development and initial psychometric properties of the Health Services and Caregiver Experience questionnaire (HSCE), a self-report tool of caregivers' global experience for inpatient clinical care, including factor structure, reliability and its relations with measures of coping strategies and family strain. The HSCE was administered to a total of 503 informal caregivers of inpatients admitted at an Italian University Hospital (mean age = 48.08 years, SD = 14.82, females = 61.40%). Family Strain Questionnaire-Short Form (FSQ-SF) and Coping Orientations to Problems Experience-New Italian Version (COPE-NVI) were administered to a subgroup of participants. First-grade relatives were 73.10%, whereas 13.20% were second-grade relatives and 13.70% were home-watch caregivers. Exploratory and confirmatory factor analyses showed a structure with a single factor, which explained 64.80% of the total variance. All the items had salient loadings. In the two subsamples, HSCE had excellent internal consistency (Cronbach's alpha = 0.95-0.97). Positive moderate correlations were found between HSCE and FSQ-SF scores (r = 0.45, p experience correlated with stronger family strain but also with better problem solving and social support. The study expanded knowledge on caregiver's experience in Italy and indicated that HSCE is a valid and reliable tool to measure this under-recognized construct in Italy.

  5. Spousal role and caregiver burden in HIV affected families in Anhui Province, China.

    Science.gov (United States)

    Hsieh, Julie; Li, Li; Lin, Chunqing; Luo, Sitong; Ji, Guoping

    2017-03-09

    This study examined the burden experienced by various roles of family caregivers of people living with HIV (PLH), in particular spouses vs. non-spouses. A total of 475 family members of PLH were recruited from Anhui Province, China. Participants responded to a survey using the Computer Assisted Personal Interview method. The assessment collected data on demographic characteristics and their perceived caregiver burden, which was compared between spouses and non-spouses. Multiple regression models were built to identify factors associated with caregiver burden. About 64.4% of our study participants were female and the mean age was 42.1 years. Among various relationships to PLH, almost half reported being a spouse. Spouses reported significantly higher caregiver burden than non-spouses. In addition, older age and lower family income were significantly associated with higher level of caregiver burden. Among the subsample of spouses, significantly higher level of caregiver burden was identified among wives. Future studies should give special consideration to address the needs of female spouses in order to reduce their caregiver burden.

  6. Cross-national differences in the prevalence and correlates of burden among older family caregivers in the WHO World Mental Health (WMH) Surveys

    Science.gov (United States)

    Shahly, V.; Chatterji, S.; Gruber, M. J.; Al-Hamzawi, A.; Alonso, J.; Andrade, L. H.; Angermeyer, M. C.; Bruffaerts, R.; Bunting, B.; Caldas-de-Almeida, J. M.; de Girolamo, G.; de Jonge, P.; Florescu, S.; Gureje, O.; Haro, J. M.; Hinkov, H. R.; Hu, C.; Karam, E. G.; Lépine, J.-P.; Levinson, D.; Medina-Mora, M. E.; Posada-Villa, J.; Sampson, N. A.; Trivedi, J.K.; Viana, M. C.; Kessler, R. C.

    2014-01-01

    Background Current trends in population aging affect both recipients and providers of informal family caregiving, as the pool of family caregivers is shrinking while demand is increasing. Epidemiologic research has not yet examined the implications of these trends for burdens experienced by aging family caregivers. Methods Cross-sectional community surveys in 20 countries asked 13,892 respondents ages 50+ about the objective (time, financial) and subjective (distress, embarrassment) burdens they experience in providing care to first-degree relatives with 12 broadly-defined serious physical and mental conditions. Differential burden was examined by country income category, kinship status, and type of condition. Results Among the 26.9-42.5% respondents in high, upper-middle, and low/lower-middle income countries reporting serious relative health conditions, 35.7-42.5% reported burden. Of those, 25.2-29.0% spent time and 13.5-19.4% money, while 24.4-30.6% felt distress and 6.4-21.7% embarrassment. Mean caregiving hours/week given any was 16.6-23.6 (169.9-205.8 hours/week/100 people ages 50+). Burden in low/lower-middle income countries was 2-3-fold higher than in higher income countries, with financial burden given any averaging 14.3% of median family income in high, 17.7% in upper-middle, and 39.8% in low/lower-middle income countries. Higher burden was reported by women than men and for conditions of spouses and children than parents or siblings. Conclusions Uncompensated family caregiving is an important societal asset that offsets rising formal healthcare costs. However, the substantial burdens experienced by aging caregivers across multiple family health conditions and geographic regions threaten the continued integrity of their caregiving capacity. Initiatives supporting older family caregivers are consequently needed, especially in low/lower-middle income countries. PMID:22877824

  7. Knowledge, perceptions, and experiences of family caregivers and home care providers of physical restraint use with home-dwelling elders: a cross-sectional study in Japan.

    Science.gov (United States)

    Kurata, Sadami; Ojima, Toshiyuki

    2014-03-27

    The use of physical restraints by family caregivers with home-dwelling elders has not been extensively studied but it might be widespread. Furthermore, it is also not clear how home care providers who support family caregivers perceive the use of physical restraint in elders' homes. This study assessed family caregivers' and home care providers' knowledge and perceptions of physical restraint used with elders living at home in Japan, a country with the highest proportion of elders in the world and where family caregiving is common. We undertook a cross-sectional study of 494 family caregivers, 201 home helpers, 78 visiting nurses, 131 visiting physicians, and 158 care managers of home-dwelling frail elders needing some care and medical support in Japan, using questionnaires on knowledge of 11 physical restraint procedures prohibited in institutions and 10 harmful effects of physical restraints, perceptions of 17 reasons for requiring physical restraints, and experiences involving physical restraint use. Family caregivers were aware of significantly fewer recognized prohibited physical restraint procedures and recognized harmful effects of physical restraint than home care providers, and differences among home care providers were significant. The average importance rating from 1 (least) to 5 (most) of the 17 reasons for requiring physical restraints was significantly higher among family caregivers than home care providers, and significantly different among the home care providers. Moreover, these differences depended in part on participation in physical restraint education classes. While 20.1% of family caregivers had wavered over using physical restraints, 40.5% of home care providers had seen physical restraints used in elders' homes and 16.7% had advised physical restraint use or used physical restraints themselves. Knowledge and perceptions of physical restraints differed between family caregivers and home care providers and were also diverse among home care

  8. How family caregivers' medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study.

    Science.gov (United States)

    Kuehlmeyer, Katja; Borasio, Gian Domenico; Jox, Ralf J

    2012-06-01

    Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. To examine the role of advance directives, orally expressed wishes, or the presumed will of patients in a VS for family caregivers' decisions on life-sustaining treatment. A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning.

  9. Care Experiences of Adults With a Dual Diagnosis and Their Family Caregivers

    Directory of Open Access Journals (Sweden)

    David B. Nicholas

    2017-07-01

    Full Text Available Individuals diagnosed with developmental disability and mental illness (a “dual diagnosis” contend with multiple challenges and system-related barriers. Using an interpretive description approach, separate qualitative interviews were conducted with adults with a dual diagnosis ( n = 7 and their caregiving parents ( n = 8 to examine care-related experiences. Results indicate that individuals with a dual diagnosis and their families experience misunderstanding and stigma. Families provide informal complex care amid insufficient and uncoordinated services but are often excluded from formal care planning. A lack of available funding and services further impedes care. While negative care experiences are reported as prevalent, participants also describe instances of beneficial care. Overall, findings indicate a lack of sufficiently targeted resources, leaving families to absorb system-related care gaps. Recommendations include person- and family-centered care, navigation support, and capacity building. Prevention and emergency and crisis care services, along with housing, vocation, and other supports, are needed. Practice and research development regarding life span needs are recommended.

  10. Psychophysiological correlates of cognitive deficits in family caregivers of patients with Alzheimer Disease.

    Science.gov (United States)

    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

    2015-02-12

    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 pmemory 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 that chronic stress experienced by these subjects has the potential to alter their BDNF levels. Copyright © 2014 IBRO. Published by Elsevier Ltd. All

  11. Caregiver responsiveness to the family bereavement program: what predicts responsiveness? What does responsiveness predict?

    Science.gov (United States)

    Schoenfelder, Erin N; Sandler, Irwin N; Millsap, Roger E; Wolchik, Sharlene A; Berkel, Cady; Ayers, Timothy S

    2013-12-01

    The study developed a multidimensional measure to assess participant responsiveness to a preventive intervention and applied this measure to study how participant baseline characteristics predict responsiveness and how responsiveness predicts program outcomes. The study was conducted with caregivers who participated in the parenting-focused component of the Family Bereavement Program (FBP), a prevention program for families that have experienced parental death. The sample consisted of 89 caregivers assigned to the intervention condition in the efficacy trial of the FBP. Positive parenting, caregiver depression, and child externalizing problems at baseline were found to predict caregivers' use of program skills outside the group, and more child internalizing problems predicted more positive perceptions of the group environment. Higher levels of skill use during the program predicted increased positive parenting at the 11-month follow-up, whereas positive perceptions of the group environment predicted decreased caregiver depressive symptoms at follow-up. Caregiver skill use mediated the relation between baseline positive parenting and improvements in positive parenting at 11-month follow-up, and skill use and perceived group environment mediated changes in caregiver depression from baseline to 11-month follow-up.

  12. Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers

    Science.gov (United States)

    Brady, Erin; Wilkerson, David; Yi, Eun-Hye; Karanam, Yamini; Callahan, Christopher M

    2017-01-01

    Background In the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers. Objective The primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants’ social networks. The study’s secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers. Methods We recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants’ Facebook News Feed, allowing participants’ Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of

  13. Anxiety in family caregivers of hospitalized persons with dementia: Contributing factors and responses

    Science.gov (United States)

    Chippendale, Tracy; Resnick, Barbara; Galvin, James E.

    2016-01-01

    Background Baseline health and functional vulnerabilities increase the risk for complications in persons with dementia and predispose family caregivers (FCGs) to increased stress. Methods This secondary analysis used a combined quantitative and qualitative approach. Regression analyses examined the contribution of patient and family caregiver characteristics to FCG anxiety. Interviews with FCGs explored the experiences and responses of FCGs during hospitalization of their family member with dementia. Results Lower patient physical function and higher caregiver strain were associated with higher FCG anxiety. FCGs described the following themes related to the hospitalization: 1) added strain; 2) care-related worries; 3) keeping vigil; 4) need to be heard; and 5) enablers of family caregivers. Conclusions Routine evaluation of caregiver strain and baseline patient function is integral to informing the transitional planning for persons with dementia. The FCG responses suggest that a multi-factorial approach (family-centered policies of partnership in care, staff education addressing the specialized needs of patients and family- members, and attention to promoting functional recovery) may benefit both hospitalized patients with dementia as well as FCGs and warrants future research. PMID:25635341

  14. Psychometric Properties and Correlates of the Beck Hopelessness Scale in Family Caregivers of Nigerian Patients with Psychiatric Disorders in Southwestern Nigeria

    Science.gov (United States)

    Aloba, Olutayo; Ajao, Olayinka; Alimi, Taiwo; Esan, Olufemi

    2016-01-01

    Objectives: To examine the construct and correlates of hopelessness among family caregivers of Nigerian psychiatric patients. Materials and Methods: This is a cross-sectional, descriptive study involving 264 family caregiver-patients’ dyads recruited from two university teaching hospitals psychiatric clinics in Southwestern Nigeria. Results: Exploratory factor analysis revealed a two-factor 9-item model of the Beck Hopelessness Scale (BHS) among the family caregivers. Confirmatory factor analysis of the model revealed satisfactory indices of fitness (goodness of fit index = 0.97, comparative fit index = 0.96, Chi-square/degree of freedom (CMIN/DF) = 1.60, root mean square error of approximation = 0.048, expected cross-validation index = 0.307, and standardized root mean residual = 0.005). Reliability of the scale was modestly satisfactory (Cronbach's alpha 0.72). Construct validity of scale was supported by significant correlations with the family caregivers’ scores on the Zarit Burden Interview, mini international neuropsychiatric interview suicidality module, General Health Questionnaire-12 (GHQ-12), and Patient Health Questionnaire-9. The greatest variance in the family caregivers’ scores on the BHS was contributed by their scores on the psychological distress scale (GHQ-12). Conclusions: The BHS has adequate psychometric properties among Nigerian psychiatric patients’ family caregivers. There is the need to pay attention to the psychological well-being of the family caregivers of Nigerian psychiatric patients.

  15. The structure of risk factors and outcomes for family caregivers: implications for assessment and treatment.

    Science.gov (United States)

    Zarit, Steven H; Femia, Elia E; Kim, Kyungmin; Whitlatch, Carol J

    2010-03-01

    We examined the associations among risk factors (e.g., behavioral problems, family conflict) and outcomes (e.g., overload, depression) commonly used in the research literature in order to inform the design of caregiver assessment and interventions. A sample of 67 caregivers caring for a family member in the middle stages of dementia were assessed on 15 risk factors and six outcome measures. Risk factors were at best only moderately correlated with one another, suggesting their relative independence. Outcome measures showed somewhat higher correlations with one another, but participants varied in terms of the number and type of outcomes that were elevated. Multivariate results showed that risk factors differed in their contribution to models, predicting various outcomes. Caregivers possess unique combinations of risk factors and outcomes that suggest the need for individualized or tailored interventions. Designing an effective caregiver assessment and corresponding targeted intervention requires careful planning and selection of appropriate risk factors and outcomes.

  16. The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden

    Science.gov (United States)

    Torabi Chafjiri, Razieh; Navabi, Nasrin; Shamsalinia, Abbas; Ghaffari, Fatemeh

    2017-01-01

    approved and pose no side effects, they can be used as an effective, low-cost and risk-free approach for all caregivers, so that they can acquire the necessary spiritual support for overcoming the stress caused by caring for family members through the reinforcement of their spiritual beliefs in the ultimate effort to provide effective care to older patients while maintaining their own health and quality of life. PMID:28280318

  17. Symptoms of mental impairment among elderly adults and their effects on family caregivers.

    Science.gov (United States)

    Deimling, G T; Bass, D M

    1986-11-01

    Research that has examined the relationship between caregiving stress and elders' symptoms of mental impairment has focused primarily on cognitive incapacity. This research expands the symptoms of mental impairment to include caregivers' reports of problems in elders' social functioning and the presence of disruptive behavior, in addition to the traditional measure of cognitive incapacity. Results from a study of 614 families living with and caring for an impaired elder show cognitive incapacity to have a less important direct effect on caregiving stress than disruptive behavior and impaired social functioning. Cognitive incapacity does have an important indirect effect through its influence on disruptive behavior and social functioning.

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

    Directory of Open Access Journals (Sweden)

    Hamad Hussein MA

    2007-06-01

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

  19. Depression and caregiver burden among rural elder caregivers.

    Science.gov (United States)

    Butler, Sandra S; Turner, Winston; Kaye, Lenard W; Ruffin, Leah; Downey, Roberta

    2005-01-01

    Family caregivers of older adults frequently experience feelings of burden and depression though they may not come to the attention to health and service providers until they are at a point of crisis. Through a simple screening tool, the Maine Primary Partners in Caring (MPPC) project identified individuals providing care to older adults through rural primary care practices, in order to provide upstream interventions before caregivers were in crisis. This paper describes a sample (n=62) of rural family caregivers identified through their physicians' offices. High levels of caregiver burden and depression were reported. Family support and knowledge of caregiver tasks predicted decreased caregiver burden and depression, while isolation predicted increased caregiver burden. Implications of these results for gerontological social workers are outlined.

  20. Burden and associated pathologies in family caregivers of Alzheimer’s disease patients in Spain

    OpenAIRE

    Vérez Cotelo N; Andrés Rodríguez NF; Fornos Pérez JA; Andrés Iglesias JC; Ríos Lago M.

    2015-01-01

    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 Questionnair...

  1. The crisis of stroke: experiences of patients and their family caregivers.

    Science.gov (United States)

    Lutz, Barbara J; Young, Mary Ellen; Cox, Kim J; Martz, Crystal; Creasy, Kerry Rae

    2011-01-01

    Approximately 4.8 million stroke survivors are living in the community with some level of disability requiring the assistance of family caregivers. Stroke family caregivers are often unprepared for the demands required of them. The purpose of this grounded theory study was to explore the needs of stroke patients and their family caregivers as they transitioned through the stroke care continuum from acute care to inpatient rehabilitation to home. Thirty-eight participants, 19 recovering stroke patients (11 male, 8 female), 15 primary family caregivers (14 spouses, 1 mother), and 4 adult children were interviewed during their stay at a rehabilitation facility and within 6 months of discharge. Interview questions were loosely structured and focused on the stroke experience and how patients and caregivers were managing postdischarge. Data were analyzed using dimensional and comparative analysis. Findings were organized in a conceptual framework illustrating the trajectory of the crisis of stroke. Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory: the stroke crisis, expectations for recovery, and the crisis of discharge. Findings from this study suggest that as caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing, and they are often underprepared to take on even the basic tasks to meet the patients' needs on discharge. Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let al.one the crisis of discharge and all of the new responsibilities with which they must deal.

  2. Effectiveness of family meetings for family caregivers on delaying time to nursing home placement of dementia patients: a randomized trial.

    Directory of Open Access Journals (Sweden)

    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

  3. Workplace characteristics and work-to-family conflict: does caregiving frequency matter?

    Science.gov (United States)

    Brown, Melissa; Pitt-Catsouphes, Marcie

    2013-01-01

    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.

  4. Web-based telemonitoring and delivery of caregiver support for patients with Parkinson disease after deep brain stimulation: protocol.

    Science.gov (United States)

    Marceglia, Sara; Rossi, Elena; Rosa, Manuela; Cogiamanian, Filippo; Rossi, Lorenzo; Bertolasi, Laura; Vogrig, Alberto; Pinciroli, Francesco; Barbieri, Sergio; Priori, Alberto

    2015-03-06

    The increasing number of patients, the high costs of management, and the chronic progress of the disease that prevents patients from performing even simple daily activities make Parkinson disease (PD) a complex pathology with a high impact on society. In particular, patients implanted with deep brain stimulation (DBS) electrodes face a highly fragile stabilization period, requiring specific support at home. However, DBS patients are followed usually by untrained personnel (caregivers or family), without specific care pathways and supporting systems. This projects aims to (1) create a reference consensus guideline and a shared requirements set for the homecare and monitoring of DBS patients, (2) define a set of biomarkers that provides alarms to caregivers for continuous home monitoring, and (3) implement an information system architecture allowing communication between health care professionals and caregivers and improving the quality of care for DBS patients. The definitions of the consensus care pathway and of caregiver needs will be obtained by analyzing the current practices for patient follow-up through focus groups and structured interviews involving health care professionals, patients, and caregivers. The results of this analysis will be represented in a formal graphical model of the process of DBS patient care at home. To define the neurophysiological biomarkers to be used to raise alarms during the monitoring process, neurosignals will be acquired from DBS electrodes through a new experimental system that records while DBS is turned ON and transmits signals by radiofrequency. Motor, cognitive, and behavioral protocols will be used to study possible feedback/alarms to be provided by the system. Finally, a set of mobile apps to support the caregiver at home in managing and monitoring the patient will be developed and tested in the community of caregivers that participated in the focus groups. The set of developed apps will be connected to the already

  5. Emotional Support, Physical Help, and Health of Caregivers of Stroke Survivors

    Science.gov (United States)

    Steiner, Victoria; Pierce, Linda; Drahuschak, Sean; Nofziger, Erin; Buchman, Debra; Szirony, Tracy

    2008-01-01

    Guided by Orem’s self-care deficit nursing theory, the purpose of this descriptive comparative study was to examine the emotional support, physical help, and health of caregivers of stroke survivors. Seventy-three caregivers from the Midwest participated in a parent study that examined their experience of caring during the first 12 months after stroke. Caregivers were randomized to an online intervention of support and education (n = 36 Web users) or a control group (n = 37 non-Web users). A secondary analysis of data collected during telephone interviews at baseline, 3, 6, and 12 months after stroke was performed. No significant mean differences were found between Web and non-Web users in the above variables at these points in time. Consequently, the caregivers were merged into one group, and the relationships among the variables at the different points in time were analyzed. Significant, moderately positive relationships were found between emotional support and physical help at baseline, 3, and 12 months. There were also significant, moderately positive relationships between emotional support and caregiver health at 6 and 12 months. Results highlight the importance of caregivers (dependent care agents in Orem’s terms) establishing an adequate self-care system that provides emotional support and physical help. Findings also denote the need for nurses (as caring agents) to assess caregiver health later in the caring process and be aware of its relationship to emotional support. PMID:18330410

  6. [Rumination and cognitive fusion in dementia family caregivers].

    Science.gov (United States)

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

    2015-01-01

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

  7. A Digital Program Informs Low-Income Caregivers of Preschool-Age Children about Family Meals

    Science.gov (United States)

    Lohse, Barbara; Rifkin, Robin; Arnold, Kristen; Least, Christine

    2012-01-01

    Objective: To evaluate the digital program, "Mealtime is Family Time", as a means of educating caregivers of preschoolers on the importance of family meals within the division of feeding responsibility framework. Methods: Descriptive design using 2 approaches: focus group program review and discussion or self-report survey after independent…

  8. Use of Equipment and Respite Services and Caregiver Health among Australian Families Living with Rett Syndrome

    Science.gov (United States)

    Urbanowicz, Anna; Downs, Jenny; Bebbington, Ami; Jacoby, Peter; Girdler, Sonya; Leonard, Helen

    2011-01-01

    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…

  9. The Impact of Intellectual Disability, Caregiver Burden, Family Functioning, Marital Quality, and Sense of Coherence

    Science.gov (United States)

    Al-Krenawi, Alean; Graham, John R.; Al Gharaibeh, Fakir

    2011-01-01

    The present article is the first to consider the impact of intellectual disability on Bedouin-Arab families' caregiver burden, family functioning, marital quality, and sense of coherence. A random sample of 300 Bedouin-Arab parents with one or more intellectually disabled children, and a control group (n = 100) completed the McMaster Family…

  10. Family functioning mediates adaptation in caregivers of individuals with Rett syndrome.

    Science.gov (United States)

    Lamb, Amanda E; Biesecker, Barbara B; Umstead, Kendall L; Muratori, Michelle; Biesecker, Leslie G; Erby, Lori H

    2016-11-01

    The objective of this study was to investigate factors related to family functioning and adaptation in caregivers of individuals with Rett syndrome (RS). A cross-sectional quantitative survey explored the relationships between demographics, parental self-efficacy, coping methods, family functioning and adaptation. A forward-backward, step-wise model selection procedure was used to evaluate variables associated with both family functioning and adaptation. Analyses also explored family functioning as a mediator of the relationship between other variables and adaptation. Bivariate analyses (N=400) revealed that greater parental self-efficacy, a greater proportion of problem-focused coping, and a lesser proportion of emotion-focused coping were associated with more effective family functioning. In addition, these key variables were significantly associated with greater adaptation, as was family functioning, while controlling for confounders. Finally, regression analyses suggest family functioning as a mediator of the relationships between three variables (parental self-efficacy, problem-focused coping, and emotion-focused coping) with adaptation. This study demonstrates the potentially predictive roles of expectations and coping methods and the mediator role of family functioning in adaptation among caregivers of individuals with RS, a chronic developmental disorder. A potential target for intervention is strengthening of caregiver competence in the parenting role to enhance caregiver adaptation. Published by Elsevier Ireland Ltd.

  11. Leading an intervention for family caregivers-a part of nursing in palliative care.

    Science.gov (United States)

    Holm, Maja; Goliath, Ida; Södlind, Hanna; Alvariza, Anette

    2017-04-02

    Professional leadership has been highlighted as an important part of successful intervention delivery. The aim of this study is to explore the narratives of nurses involved in leading a group intervention for family caregivers in palliative care. Nurses were interviewed about their experiences as group leaders in a psycho-educational group intervention, which was delivered at 10 specialised palliative home care settings, with the help of an intervention manual. Data were analysed with interpretive descriptive methodology. Three themes were identified in the analysis: embracing the leading role, developing qualities as a group leader, and professional and personal development. The results showed that the role as group leader initially was a challenge for the nurses, but that they gradually were able to develop the professional and personal skills that were required. The nurses believed that their profession was best suited to lead this kind of supportive intervention.

  12. Lifestyle as a health risk for family caregivers with least life satisfaction, in home-based post-stroke caring.

    Science.gov (United States)

    Baumann, Michèle; Bucki, Barbara

    2013-10-01

    Our purpose was to clarify that caregiving roles represent a situation of risk for the health of family caregivers, in home-based caring two years after cerebrovascular disease. Our aim was to determine the social and emotional repercussions of the event on family caregivers. Family caregivers living at home with stroke survivors were identified by a national survey. The Life Satisfaction (LS) national indicator for Luxembourg is 7.9/10, while in Canada it stands at 7.7. Caregivers with a LS level ≤ 7 were more likely to care for survivors affected by motor, sensory and memory neurological impairments. For a great majority, these impairments led to serious upheaval among families, and for spouses it was "a drama." For family caregivers with a least life satisfaction, their lifestyle poses a real health risk for the public health system. Copyright © 2013 Longwoods Publishing.

  13. Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients : which caregivers benefit the most?

    NARCIS (Netherlands)

    van den Heuvel, ETP; de Witte, LP; Stewart, RE; Schure, LM; Sanderman, R; Meyboom-de Jong, B

    2002-01-01

    In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and in

  14. Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients : which caregivers benefit the most?

    NARCIS (Netherlands)

    van den Heuvel, ETP; de Witte, LP; Stewart, RE; Schure, LM; Sanderman, R; Meyboom-de Jong, B

    In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and

  15. Family caregiver perspective-taking and accuracy in estimating cancer patient symptom experiences.

    Science.gov (United States)

    Lobchuk, Michelle M; Vorauer, Jacquie D

    2003-12-01

    As family caregivers assume more prominent roles in the provision of home care to persons with serious illness, investigators must test the effectiveness of novel interventions to facilitate family caring for cancer patients. This article is based on results derived from a larger study carried out in Canada that was designed to compare 98 advanced cancer patient and family caregiver perceptions of 32 patient symptom experiences as captured by the Memorial Symptom Assessment Scale. We examined two main questions: (1) whether "natural" family caregivers' perceptions of patient lack of energy and worrying are more closely related to a self- or patient-oriented viewpoint and (2) whether induced "imagine-patient" perspective-taking can assist caregivers to achieve better perceptual accuracy. The caregiver's natural responses to neutral instructions that neither encouraged nor discouraged perspective-taking served as the baseline comparison with three other instructional sets, in which caregivers were prompted to: (1) provide a self-report on their own symptom experiences, (2) imagine how they would feel in the patient's situation (imagine-self), or (3) imagine how the patient would respond to his or her symptom situation (imagine-patient). Findings suggested that the family caregivers' natural judgments correspond most closely to what they do under an imagine-patient set than to what they do under any other set. Findings with respect to accuracy indicated that instructions to imagine the patient's perspective helped to prompt adjustments down from a self-oriented viewpoint, although definitive conclusions were precluded by difficulties with order effects.

  16. The power of siblings and caregivers: under-explored types of social support among children affected by HIV and AIDS

    Science.gov (United States)

    Sharer, Melissa; Cluver, Lucie; Shields, Joseph J.; Ahearn, Frederick

    2016-01-01

    ABSTRACT Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. There is a need for research to examine how social support functions as a source of resiliency for children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS). Using the ecological model as a frame, data were drawn from a 2011 cross-sectional study of 1380 children classified as either orphaned by AIDS and/or living with an AIDS sick family member. The children were from high-poverty, high HIV-prevalent rural and urban communities in South Africa. Social support was analyzed in depth by examining the source (e.g. caregiver, sibling) and the type (e.g. emotional, instrumental, quality). These variables were entered into multiple regression analyses to estimate the most parsimonious regression models to show the relationships between social support and depression, anxiety, and PTS symptoms among the children. Siblings emerged as the most consistent source of social support on mental health. Overall caregiver and sibling support explained 13% variance in depression, 12% in anxiety, and 11% in PTS. Emotional support was the most frequent type of social support associated with mental health in all regression models, with higher levels of quality and instrumental support having the strongest relation to positive mental health outcomes. Although instrumental and quality support from siblings were related to positive mental health, unexpectedly, the higher the level of emotional support received from a sibling resulted in the child reporting more symptoms of depression, anxiety, and PTS. The opposite was true for emotional support provided via caregivers, higher levels of this support was related to lower levels of all mental health symptoms. Sex was significant in all regressions, indicating the presence of

  17. The Relationship between Family Education and Support Services and Parent and Child Outcomes over Time

    Science.gov (United States)

    Kutash, Krista; Garraza, Lucas Godoy; Ferron, John M.; Duchnowski, Albert J.; Walrath, Christine; Green, Amy L.

    2013-01-01

    The purpose of the current study is to contribute to the knowledge base on the use of family education and support (FES) services by examining the longitudinal trajectories of FES receipt and multiple domains of child and family functioning. Using an extant data set of more than 9,000 youth and their caregivers, results indicate that families who…

  18. The Relationship between Family Education and Support Services and Parent and Child Outcomes over Time

    Science.gov (United States)

    Kutash, Krista; Garraza, Lucas Godoy; Ferron, John M.; Duchnowski, Albert J.; Walrath, Christine; Green, Amy L.

    2013-01-01

    The purpose of the current study is to contribute to the knowledge base on the use of family education and support (FES) services by examining the longitudinal trajectories of FES receipt and multiple domains of child and family functioning. Using an extant data set of more than 9,000 youth and their caregivers, results indicate that families who…

  19. Family caregiver social problem-solving abilities and adjustment to caring for a relative with vision loss.

    Science.gov (United States)

    Bambara, Jennifer K; Owsley, Cynthia; Wadley, Virginia; Martin, Roy; Porter, Chebon; Dreer, Laura E

    2009-04-01

    To examine the prevalence of persons at risk for depression among family caregivers of visually impaired persons and the extent to which social problem-solving abilities are associated with caregiver depressive symptomatology and life satisfaction. Family caregivers were defined as adults who accompanied their adult relative to an appointment at a low-vision rehabilitation clinic and self-identified themselves as the primary family caregiver responsible for providing some form of assistance for their relative due to vision impairment. Demographic variables, depressive symptoms, life satisfaction, caregiver burden, and social problem-solving abilities were assessed in caregivers. The patient's visual acuity and depressive symptoms and their relationship to the caregiver's depressive symptoms and life satisfaction were also examined. Ninety-six family caregivers were enrolled. Of those, 35.4% were identified as at risk for depression. Among caregivers, dysfunctional or ineffective social problem-solving abilities were significantly associated with greater depressive symptomatology and decreased life satisfaction after adjustment for caregiver burden and demographic and medical variables for both the caregiver and the visually impaired patient. Problem orientation or motivation to solving problems was also significantly associated with caregiver depression and satisfaction with life. A substantial number of caregivers of visually impaired adults experience psychosocial distress, particularly among those who possess poor social problem-solving abilities. These results underscore the need for routine screening and treatment of emotional distress among individuals caring for relatives with vision impairments. Future research should examine the extent to which psychosocial interventions targeting caregiver social problem-solving skills may be useful not only in improving caregiver quality of life but also in subsequently enhancing rehabilitation outcomes for the visually

  20. Evidence-based psychological treatments for distress in family caregivers of older adults.

    Science.gov (United States)

    Gallagher-Thompson, Dolores; Coon, David W

    2007-03-01

    This review identifies evidence-based psychological treatments (EBTs) for reducing distress, and improving well-being, of family members caring for an older relative with significant cognitive and/or physical impairment. Three categories of psychologically derived treatments met EBT criteria: psychoeducational programs (N = 14 studies), psychotherapy (N = 3 studies), and multicomponent interventions (N = 2 studies). Specifically, support within the psychoeducational category was found for skill-training programs focused on behavior management, depression management, and anger management and for the progressively lowered threshold model. Within the psychotherapy category, cognitive-behavioral therapy enjoys strong empirical support. Within the multicomponent category, programs using a combination of at least 2 distinct theoretical approaches (e.g., individual counseling and support group attendance) were also found to be effective. Suggestions for future research include the development of more well-integrated multicomponent approaches, greater inclusion of ethnically diverse family caregivers in research protocols, and greater incorporation of new technologies for treatment delivery. ((c) 2007 APA, all rights reserved).

  1. Neuropsychiatric symptoms of the elderly with Alzheimer's disease and the family caregivers' distress

    Directory of Open Access Journals (Sweden)

    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.

  2. Neuropsychiatric symptoms of the elderly with Alzheimer's disease and the family caregivers' distress 1

    Science.gov (United States)

    Storti, Luana Baldin; Quintino, Débora Teles; Silva, Natália Michelato; Kusumota, Luciana; Marques, Sueli

    2016-01-01

    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. PMID:27533264

  3. Stressors, social support, depressive symptoms and general health status of Taiwanese caregivers of persons with stroke or Alzheimer's disease.

    Science.gov (United States)

    Huang, Chiung-Yu; Sousa, Valmi D; Perng, Shao-Jen; Hwang, Mei-Yi; Tsai, Chun-Ching; Huang, Mei-Huang; Yao, Shu-Ying

    2009-02-01

    This study examined the relationships among stressors, social support, depressive symptoms and the general health status of Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Caring for a disabled or cognitively impaired person can be extremely stressful and often has adverse effects on caregivers' health. While research on caregiving in Taiwan has examined caregivers' characteristics, caregivers' need and caregivers' burden in caring for older people in general, little is known about Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Cross-sectional, descriptive correlation design. Data were obtained from a convenience sample of 103 Taiwanese informal caregivers in the South of Taiwan and analysed using descriptive statistics, Pearson's correlations, multiple and hierarchical regressions and t-tests. Caregivers who had lower household incomes and were taking care of individuals with more behaviour problems had more depressive symptoms. In addition, caregivers who were older and were taking care of individuals with more behaviour problems had worse general health. Caregivers who had more emotional support had less depressive symptoms. Caregivers of persons with Alzheimer's disease had more depressive symptoms and worse general health than caregivers of persons with stroke. Only emotional support moderated the relationship between one of the stressors (household income) and depressive symptoms. The findings of this study may be helpful for nurses and other health care professionals in designing effective interventions to minimise the negative impacts of stressors on the psychological and general health of caregivers in Taiwan.

  4. Military Stress-Busting Program for Family Caregivers

    Science.gov (United States)

    2014-05-20

    study, we found caregivers who were interested to participate but would not be available for the nine weeks. We amended the protocol to condense the...of facility resources. (4) We “implemented” the program with fidelity to its protocol in both the active duty and veteran settings in the provision...Legacy of Caring.” 35th Annual Conference of the International Association for Human Caring. 26 May, 2014. Kyoto , Japan. Miner-Williams, D & Loomis

  5. The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a qualitative systematic review

    DEFF Research Database (Denmark)

    Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard;

    Introduction: Support groups are considered an effective and economical way to relieve informal caregivers stress and burden. Research shows, that participating in support groups seems to be beneficial for the informal caregivers, but there are no significant improvements in feelings of stress an...... that through comparison and sharing positive and negative emotions, the members of the support group are able to take on and maintain the role as caregiver.......Introduction: Support groups are considered an effective and economical way to relieve informal caregivers stress and burden. Research shows, that participating in support groups seems to be beneficial for the informal caregivers, but there are no significant improvements in feelings of stress...... and burden. It is unclear how support groups can produce a meaningful and optimal outcome for the informal caregivers. Aim: To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. Method: A systematic literature review...

  6. Comparing treatment fidelity between study arms of a randomized controlled clinical trial for stroke family caregivers.

    Science.gov (United States)

    McLennon, Susan M; Hancock, Rebecca D; Redelman, Kathleen; Scarton, Lisa J; Riley, Elizabeth; Sweeney, Bobbie; Habermann, Barbara; Jessup, Nenette M; Bakas, Tamilyn

    2016-05-01

    To compare treatment fidelity among treatment arms in the Telephone Assessment and Skill-Building Kit study for stroke caregivers (TASK II) with respect to: 1) protocol adherence; 2) intervention dosage and 3) nurse intervener perspectives. A randomized controlled clinical trial design. Urban, community, midwestern United States. A total of 254 stroke caregivers (mean ±SD age, 54.4 ±11.8 years), 55 (22.0%) males and 199 (78.4%) females) randomized to the TASK II intervention (n=123) or an Information, Support, and Referral comparison group (n=131). TASK II participants received the TASK II Resource Guide; Information, Support, and Referral participants received a standard caregiver brochure. At approximately 8 weeks after discharge, both groups received 8 weekly calls from a nurse, with a booster call 4 weeks later. Protocol adherence was evaluated with the TASK II Checklist for Monitoring Adherence. Intervention dosage was measured by the number of minutes caregivers spent reading materials and talking with the nurse. Nurse intervener perspectives were obtained through focus groups. Protocol adherence was 80% for the TASK II and 92% for the Information, Support, and Referral. As expected, intervention dosage differed between TASK II and Information, Support, and Referral with respect to caregiver time spent reading materials (t=-6.49; Pstroke caregiver intervention trial (NIH R01NR010388; ClinicalTrials.govNCT01275495). © The Author(s) 2015.

  7. Factors impacting the mental health of the caregivers of children with asthma in china: effects of family socioeconomic status, symptoms control, proneness to shame, and family functioning.

    Science.gov (United States)

    Zhou, Ting; Yi, Chunli; Zhang, Xuxia; Wang, Yuyin

    2014-12-01

    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.

  8. A qualitative study protocol of ageing carers' caregiving experiences and their planning for continuation of care for their immediate family members with intellectual disability.

    Science.gov (United States)

    Low, Lisa Pau Le; Chien, Wai Tong; Lam, Lai Wah; Wong, Kayla Ka Yin

    2017-04-07

    Understanding the difficulties and needs of the family carers in taking care of a person with ID can facilitate the development of appropriate intervention programmes and services to strengthen their caring capacity and empower them to continue with their caring roles. This study aims to explore ageing family carers' caregiving experiences and the plans they have to provide care for themselves and their ageing children with mild or moderate intellectual disability (ID). A constructivist grounded theory will be used to interview around 60 carers who have a family member with mild or moderate ID and attending sheltered workshops in Hong Kong. Constant comparative analysis methods will be used for data analysis. The theory will capture family caregiving experiences and the processes of carers in addressing caregiving needs, support received and plans to continue to provide care for themselves and their relatives with ID in their later life. New insights into the emerging issues, needs and plights of family caregivers will be provided to inform the policies and practices of improving the preparation for the ageing process of the persons with ID, and to better support the ageing carers. The theoretical framework that will be generated will be highly practical and useful in generating knowledge about factors that influence the caregiving processes; and, tracking the caregiving journey at different time-points to clearly delineate areas to implement practice changes. In this way, the theoretical framework will be highly useful in guiding timely and appropriate interventions to target at the actual needs of family carers as they themselves are ageing and will need to continue to take care of their family members with ID in the community.

  9. Caregivers

    Science.gov (United States)

    ... day, 7 days a week. If you're caring for someone with mental problems like Alzheimer's disease it can be especially difficult. Support groups can help. Dept. of Health and Human Services Office on Women's Health

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

    Directory of Open Access Journals (Sweden)

    Ruth Molina Fuillerat

    2012-01-01

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

  11. The impact of caregiver support on mortality following burn injury in the elderly.

    Science.gov (United States)

    Alsafran, Salman K; Davis, James S; Tankel, Susan; Varas, Robin; Quintana, Olga; Manning, Ron; Glenn, Candace; Pizano, Louis R; Namias, Nicholas; Schulman, Carl I

    2013-01-01

    Advances in burn care have decreased mortality in the past 20 years, but affecting elderly mortality rates (>65 years) remain challenging. This study evaluates the impact of home caregiver support on elderly burn patients' mortality. The authors retrospectively reviewed patients aged 65 and older admitted to their burn center from July 1995 to October 2004. Patient demographics, Injury Severity Score, TBSA, and patients' primary caregiver were collected. The outcomes were mortality, disposition, and length of stay and these were evaluated using univariate and subsequently multivariate regression. Significance was calculated at P ≤ .05. A total of 112 patients were included in the analysis. The mean age was 76±8. Male patients constituted 47%, whereas 53% were female patients, and mean TBSA was 21±16%. Thirty patients' primary caregiver was a spouse, for 38 it was a child, and 44 had no caregiver. Fifty-eight patients survived (51.7%), and 54 patients died (48.3%). Only 21% of the survivors had a child as their primary caregiver; however, 48% of the nonsurvivors had a child as the primary caregiver (P ≤ 0.05). On multivariate analysis, age, TBSA, and child as primary caregiver were all independent predictors of mortality. Having a child as a caregiver provided the largest impact, with an odds ratio of 4.4 (95% confidence interval, 1.2-15.62; P = .02).

  12. Social support sources, types, and generativity: a focus group study of cancer survivors and their caregivers.

    Science.gov (United States)

    Wong, Alison G; Ki, Ppudah; Maharaj, Artie; Brown, Edna; Davis, Cindy; Apolinsky, Felice

    2014-01-01

    Various research studies have identified the sources and types of support that people with cancer receive; however, few have focused on identifying the specific characteristics of emotional, instrumental, and informational support. In this study, focus groups consisting of Gilda's Club members explored the types of support that people with cancer and their caregivers experienced and valued. Results showed that although men and women with cancer and caregivers identify similar sources of support, they experience different types of support. Results also indicated a desire among participants to help and support others, a concept referred to as generativity. Implications for social workers and health care providers are explored.

  13. Study on occupational therapy groups for caregivers of families with schizophrenia patients

    Directory of Open Access Journals (Sweden)

    Angélica da Silva Araujo

    2014-04-01

    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.

  14. The experiences of culturally and linguistically diverse family caregivers in utilising dementia services in Australia

    Science.gov (United States)

    2013-01-01

    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

  15. Adolescent and caregiver perception of family functioning: relation to suicide ideation and attempts.

    Science.gov (United States)

    Lipschitz, Jessica M; Yen, Shirley; Weinstock, Lauren M; Spirito, Anthony

    2012-12-30

    This study assessed the relationship between perceived family functioning and two indicators of suicidality in an adolescent sample. A total of 103 adolescents psychiatrically hospitalized for suicidal ideation and/or behavior completed a battery of self-report questionnaires assessing family functioning, negative affectivity, suicidal ideation in the past week assessed by Beck's Scale for Suicide Ideation (BSS; Beck et al., 1979), and past suicide attempts. Participants' primary caregivers also completed a questionnaire on family functioning. A paired samples t-test evaluated overall discrepancy between adolescent- and caregiver-reported family functioning. Linear and logistic regression models were used to evaluate the simple associations between perceived family functioning and suicidal indicators (BSS and previous attempt status), as well as the associations between perceived family functioning and suicidal indicators after controlling for negative affect. Results indicated that adolescents' ratings of family functioning were significantly worse than caregivers' ratings, and positively associated with BSS scores and a history of suicide attempt. When negative affect was controlled for, adolescent-reported family functioning was significantly associated with BSS, but only trended toward significance with attempt status. Findings suggest that adolescents' perceptions of family functioning may be a key contributing factor to suicidal ideation in adolescents with psychiatric disorders.

  16. Support efforts for caregivers of chronically ill persons

    DEFF Research Database (Denmark)

    Glasdam, Stinne; Timm, Helle; Vittrup, Rikke

    2010-01-01

    and evaluate these interventions. A systematic literature review was conducted, including previous reviews and controlled studies from 1997 to 2007 of interventions targeting caregivers of adults with stroke, diabetes, cardiovascular disease, and cancer.Ten out of the 32 studies included found...

  17. Caregiver Experiences of Supporting Adults with Intellectual Disabilities in Pain

    Science.gov (United States)

    Findlay, Laura; Williams, Amanda C. de C.; Baum, Sandra; Scior, Katrina

    2015-01-01

    Background: Caregivers have an intimate knowledge of the individuals they care for and are therefore an important source of information on pain experiences. They are often relied upon to recognize pain-related behaviours and report them, but little is known as to how they experience their role. Methods: Information was collected from 11 caregivers…

  18. Caregiver profiles and determinants of caregiving burden in Ghana.

    Science.gov (United States)

    Sanuade, O A; Boatemaa, S

    2015-07-01

    Due to the growing elderly population, the high cost of care in Ghana and low coverage of the National Health Insurance Scheme, demands for family caregiving have become more imperative in Ghana than ever before. Many caregivers experience high burdens, yet literature on caregiving in Ghana is lacking. This study examined caregiver profiles and determinants of the burden of caregiving in Ghana. Cross-sectional study. This study used data from Wave 1 of the World Health Organization (WHO) Study on Global Ageing and Adult Health (2007-2008). In total, 238 caregivers were analysed in the study. The burden of caregiving was measured using the WHO Impact of Caregiving Scale. Independent sample t-tests, correlations and analysis of variance were used to investigate associations between background characteristics and the burden of caregiving. Linear regression was used to examine determinants of the burden of caregiving. The mean age of caregivers was 61 years (standard deviation 14.5), and the male:female ratio was approximately equal. On average, approximately two adults per household required care. Less than five percent of caregivers received financial, emotional, health, physical and personal care support. Place of residence, provision of financial, health and physical support to care recipients, and receipt of financial, physical and health support were significant determinants of the burden of caregiving. This study found a mismatch between the number of people needing care and the number of people providing care. In order to improve the health of caregivers and care recipients, there is a need to provide financial support for caregivers. In addition, pro-caregiving government programmes and policies should be established. Copyright © 2015 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.

  19. Validity and reliability of the Family Empowerment Scale for caregivers of adults with mental health issues.

    Science.gov (United States)

    Kageyama, M; Nakamura, Y; Kobayashi, S; Yokoyama, K

    2016-10-01

    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

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

    Science.gov (United States)

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

    2017-07-01

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

  1. Structural and Functional Support in the Prediction of Smoking Cessation in Caregivers of Children with Asthma.

    Science.gov (United States)

    Tooley, Erin M; Busch, Andrew; McQuaid, Elizabeth L; Borrelli, Belinda

    2015-01-01

    Caregivers of children with asthma smoke at rates similar to the general population. Research on the relative importance of structural or functional social support in smoking cessation has been mixed. Participants were smokers (N = 154) who were caregivers of children with asthma. Both functional (Interpersonal Support Evaluation List) and structural social support (living with another smoker, partner status, and the proportion of smoking friends) were measured at baseline. Participants received an asthma-education and smoking cessation intervention based on Motivational Interviewing. Biochemically-verified abstinence was assessed at six months post treatment. Results indicated that functional support predicted smoking abstinence even when controlling for relevant covariates and structural support (OR = .896, p = .025). Exploratory analyses revealed that this effect was driven primarily by the self-esteem ISEL subscale. Smoking cessation that focuses on building general functional support, particularly self-esteem support, may be beneficial for smoking cessation in caregivers of children with asthma.

  2. Experiences to be a family caregiver of dependent elderly in the home environment

    Directory of Open Access Journals (Sweden)

    Alcimar Marcelo do Couto

    2016-02-01

    Full Text Available Objective: to understand the experience of caring for dependent elderly in the home environment, from the perspective of family caregivers that present burden and emotional distress. Methods: this is a qualitative research with a contribution in the Theory Grounded in Data. There were home visits for observation and semi-structured interviews with nine relatives of dependent elderly in self-care. Results: with the coding and analysis of empirical data, one can understand the daily cares in the care relationship with their elderly dependent relatives. The consolidated experiences underlie on positive experiences, such as solidarity by the established interaction and the maintenance of self-esteem, and negative as changes in daily routine and health, with stress identification related to the caregiver role. Conclusion: in the understanding of the family, their experiences as a caregiver in the home context varied between positive and negative aspects, which respectively minimize and maximize the feeling of burden and emotional distress.

  3. Anger expression and natural killer cell activity in family caregivers participating in a physical activity trial.

    Science.gov (United States)

    Wilcox, S; King, A C; Vitaliano, P P; Brassington, G S

    2000-07-01

    Associations between psychological functioning and natural killer cell activity (NKA) were examined in 23 older (62.2 ± 7.5 years) family caregivers randomized to a moderate intensity four-month exercise program or to a wait-list control condition. At baseline, although NKA was related to anger-control (r = -.42; trend p caregiver burden. After controlling for baseline NKA, changes in anger-control explained 14 percent of the variance in NKA four months later. Decreases in anger-control predicted increases in NKA. Group assignment (exercise vs control) was unrelated to changes in NKA over the four-month period; however, the study was not powered to detect this effect. These results are consistent with reported relationships of anger expression with other physiological measures, and extend the importance of anger expression to immune functioning in older family caregivers.

  4. Effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia: design of a randomized controlled trial

    Directory of Open Access Journals (Sweden)

    Blom Marco M

    2013-01-01

    Full Text Available Abstract Background The number of people with dementia is rising rapidly as a consequence of the greying of the world population. There is an urgent need to develop cost effective approaches that meet the needs of people with dementia and their family caregivers. Depression, feelings of burden and caregiver stress are common and serious health problems in these family caregivers. Different kinds of interventions are developed to prevent or reduce the negative psychological consequences of caregiving. The use of internet interventions is still very limited, although they may be a cost effective way to support family caregivers in an earlier stage and diminish their psychological distress in the short and longer run. Methods/design A pragmatic randomized controlled trial is designed to evaluate the effectiveness and cost-effectiveness of ‘Mastery over Dementia’, an internet intervention for caregivers of people with dementia. The intervention aims at prevention and decrease of psychological distress, in particular depressive symptoms. The experimental condition consists of an internet course with 8 sessions and a booster session over a maximum period of 6 months guided by a psychologist. Caregivers in the comparison condition receive a minimal intervention. In addition to a pre and post measurement, an intermediate measurement will be conducted. In addition, there will be two follow-up measurements 3 and 6 months after post-treatment in the experimental group only. To study the effectiveness of the intervention, depressive symptoms are used as the primary outcome, whereas symptoms of anxiety, role overload and caregiver perceived stress are used as secondary outcomes. To study which caregivers profit most of the internet intervention, several variables that may modify the impact of the intervention are taken into account. Regarding the cost-effectiveness, an economic evaluation will be conducted from a societal perspective. Discussion This

  5. Association between the functional capacity of dependant elderly people and the burden of family caregivers

    Directory of Open Access Journals (Sweden)

    Ana Cláudia Fuhrmann

    Full Text Available The aim of this study was to characterize dependent elderly people and their main family caregivers and the association between functional capacity of the elderly and the burden of caregivers. This cross-sectional study was conducted with 112 elderly people and caregivers connected to a primary care service in Porto Alegre, Brazil. The applied instruments related to care and socioeconomic variables were Physical and Instrumental Activities of Daily Living (PADL and IADL and the Burden Interview. The Spearman correlation coefficient was also used. Average age of the elderly individuals in this study was 81.41 years, while the average score for PADL was 10.36 and 6.25 for IADL. Of the 112 elderly individuals, 71.4% had severe dependence. Among caregivers, 75% were women, 61.6% were the sons or daughters with an average age of 57.98 and an average burden of 29.53, which is equivalent to moderate burden. Results revealed a significant correlation between functional capacity of the elderly and caregiver burden. It was verified that the higher the dependence of elderly people, the greater the burden of caregivers.

  6. Idosos dependentes: famílias e cuidadores Dependent seniors: families and caregivers

    Directory of Open Access Journals (Sweden)

    Ursula M. Karsch

    2003-06-01

    Full Text Available Este artigo centra-se no tema assistência a idosos dependentes por doença crônica e degenerativa, e chama a atenção para o papel do cuidador em casa. A recomendação para que os cuidados aos idosos dependentes sejam desenvolvidos no domicílio está ganhando mais força, muitas vezes de maneira incauta por parte dos profissionais de saúde. Delegar à família a função de cuidar necessita de clareza sobre a estrutura familiar, o tipo de cuidado a ser executado, o tempo necessário, as características da doença e o acompanhamento profissional. Em países onde o envelhecimento populacional se deu mais lentamente do que no Brasil, os cuidados e os cuidadores familiares são objeto de políticas e programas de Saúde Pública.This article focuses on health care for dependent seniors in relation to chronic illnesses. Expectations about family support for the dependent elderly are related to the role of family caregivers, but care requires support from the public and private sectors. Governments throughout the developed countries are examining their role in the provision of social welfare programs, especially in the public health sector. To recommend home care and family assistance, the context of changing family structures, the type of care needed, and professional follow-up must be taken into account.

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

    Science.gov (United States)

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

    2016-09-01

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

  8. A chronic grief intervention for dementia family caregivers in long-term care.

    Science.gov (United States)

    Paun, Olimpia; Farran, Carol J; Fogg, Louis; Loukissa, Dimitra; Thomas, Peggy E; Hoyem, Ruby

    2015-01-01

    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.

  9. Impact of assistive technology on family caregivers of children with physical disabilities: a systematic review.

    Science.gov (United States)

    Nicolson, Amy; Moir, Lois; Millsteed, Jeannine

    2012-09-01

    To systematically review the literature on the effects of assistive technology (AT) on family caregivers of children with physical disabilities. Electronic searches of Medline, CINAHL Plus, PubMed, and PsychInfo were conducted. The main search terms were AT, caregiver, physical disability, cerebral palsy and quality of life. Studies were included if they related to the impact of AT on the family caregiver of children with physical impairment. Data extraction and quality assessments were conducted by three reviewers. Five articles were eligible for inclusion. Two studies rated weak quality of evidence (level 5), two studies rated moderate quality of evidence (level 3), and one article was a systematic review, rating high level of quality (level 1). A paucity of literature, small sample sizes, descriptive study designs and weak methodological quality meant a narrative review was possible. Three articles reported that AT lightened caregiver assistance in the areas of mobility, self- care and social function. Evidence suggests that AT has a positive impact on children with physical impairments and their caregivers. Future studies in this area could include valid and reliable outcome measures of AT use and the psychological impacts of AT on caring for a child with physical impairments.

  10. Partners in Dementia Care: A Care Coordination Intervention for Individuals with Dementia and Their Family Caregivers

    Science.gov (United States)

    Judge, Katherine S.; Bass, David M.; Snow, A. Lynn; Wilson, Nancy L.; Morgan, Robert; Looman, Wendy J.; McCarthy, Catherine; Kunik, Mark E.

    2011-01-01

    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…

  11. Dyadic interventions for community-dwelling people with dementia and their family caregivers: a systematic review

    NARCIS (Netherlands)

    A.E. Prick; A.M. Pot; Dr. P.D.D.M. Roelofs; Dr. J. de Lange; M.A. van 't Leven; Dr. J.H. Groenewoud

    2013-01-01

    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 t

  12. Dyadic interventions for community-dwelling people with dementia and their family caregivers: a systematic review

    NARCIS (Netherlands)

    Leven, M.A. van 't; Prick, A.E.; Groenewoud, J.H.; Roelofs, P.D.D.M.; Lange, J. de; Pot, A.M.

    2013-01-01

    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 t

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

    Science.gov (United States)

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

    2014-01-01

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

  14. "A Great Program...for Me as a Gramma": Caregivers Evaluate a Family Literacy Initiative

    Science.gov (United States)

    Anderson, Jim; Morrison, Fiona

    2007-01-01

    In this article, we report a study in which we asked 137 parents and caregivers to evaluate a year-long family literacy program in which they participated. Parents valued the insights they gained about children's learning in general and literacy development in particular. They reported that they learned from each other as well as from the program…

  15. The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden

    Directory of Open Access Journals (Sweden)

    Torabi Chafjiri R

    2017-03-01

    and 37% had favorable burden. The mean score of burden was 28±12.75. A statistically significant positive relationship was observed in this study between the mean score of spiritual atti­tude and the total score of burden in all its dimensions, namely, time dependence, as well as the developmental, physical, social and emotional dimensions.Conclusion: Providing strategies for improving spirituality, such as teaching spiritual self-care, can improve their burden. Given that such strategies are psychologically approved and pose no side effects, they can be used as an effective, low-cost and risk-free approach for all caregivers, so that they can acquire the necessary spiritual support for overcoming the stress caused by caring for family members through the reinforcement of their spiritual beliefs in the ultimate effort to provide effective care to older patients while maintaining their own health and quality of life. Keywords: spiritual attitude, burden, family caregivers, older patients, stroke

  16. PalliPA: How can general practices support caregivers of patients at their end of life in a home-care setting? A study protocol.

    NARCIS (Netherlands)

    Hermann, K.; Boelter, R.; Engeser, P.; Szecsenyi, J.; Campbell, S.M.; Peters-Klimm, F.

    2012-01-01

    BACKGROUND: The care of patients with a life-threatening, progressive and far advanced illness in a home-care setting requires appropriate individual care and requires the active support of family caregivers. General practice teams are usually the primary care givers and first contact and are best p

  17. The effectiveness of a group psycho-educational program on family caregiver burden of patients with mental disorders

    Directory of Open Access Journals (Sweden)

    Navidian Ali

    2012-08-01

    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

  18. Partial mediation role of self-efficacy between positive social interaction and mental health in family caregivers for dementia patients in Shanghai.

    Directory of Open Access Journals (Sweden)

    Shuying Zhang

    Full Text Available We explored the mediation effect of caregiver self-efficacy on the influences of behavioral and psychological symptoms (BPSD of dementia care recipients (CRs or family caregivers' (CGs social supports (informational, tangible and affectionate support and positive social interaction on CGs' mental health. We interviewed 196 CGs, using a battery of measures including demographic data of the dyads, CRs' dementia-related impairments, and CGs' social support, self-efficacy and the Medical Outcome Study (MOS Short-Form (SF-36 Health Survey. Multiple regression analyses showed that gathering information on self-efficacy and managing CG distress self-efficacy were the partial mediators of the relationship between positive social interaction and CG mental health. Managing caregiving distress self-efficacy also partial mediated the impact of BPSD on CG mental health. We discuss implications of the results for improving mental health of the target population in mainland China.

  19. Examining the effect of peer helping in a coping skills intervention: a randomized controlled trial for advanced gastrointestinal cancer patients and their family caregivers.

    Science.gov (United States)

    Mosher, Catherine E; Secinti, Ekin; Johns, Shelley A; O'Neil, Bert H; Helft, Paul R; Shahda, Safi; Jalal, Shadia I; Champion, Victoria L

    2017-06-10

    At the end of life, spiritual well-being is a central aspect of quality of life for many patients and their family caregivers. A prevalent spiritual value in advanced cancer patients is the need to actively give. To address this need, the current randomized trial examined whether adding a peer helping component to a coping skills intervention leads to improved meaning in life and peace for advanced gastrointestinal cancer patients and their caregivers. Feasibility and acceptability outcomes were also assessed. Advanced gastrointestinal cancer patients and caregivers (n = 50 dyads) were randomly assigned to a 5-session, telephone-based coping skills intervention or a peer helping + coping skills intervention. One or both dyad members had moderate-severe distress. Peer helping involved contributing to handouts on coping skills for other families coping with cancer. Patients and caregivers completed measures of meaning in life/peace, fatigue, psychological symptoms, coping self-efficacy, and emotional support. Patient pain and caregiver burden were also assessed. Small effects in favor of the coping skills group were found regarding meaning in life/peace at 1 and 5 weeks post-intervention. Other outcomes did not vary as a function of group assignment, with both groups showing small decreases in patient and caregiver fatigue and caregiver distress and burden. High recruitment and retention rates supported feasibility, and high participant satisfaction ratings supported acceptability. Although a telephone-based intervention is feasible and acceptable for this population, peer helping in the context of a coping skills intervention does not enhance spiritual well-being relative to coping skills alone.

  20. Gender issues and Japanese family-centered caregiving for frail elderly parents or parents-in-law in modern Japan: From the sociocultural and historical perspectives

    OpenAIRE

    2000-01-01

    This paper presents a sociocultural and historical literature review of gender related issues associated with family-centered caregiving for frail, elderly relatives in modern Japan. Issues addressed from a Japanese perspective are (a) women and social norms of caregiving, (b) feminine identity and caregiving, (c) women in the workforce, and (d) women and caregiving. Implications for research are also discussed.

  1. Gender issues and Japanese family-centered caregiving for frail elderly parents or parents-in-law in modern Japan: from the sociocultural and historical perspectives.

    Science.gov (United States)

    Hashizume, Y

    2000-01-01

    This paper presents a sociocultural and historical literature review of gender related issues associated with family-centered caregiving for frail, elderly relatives in modern Japan. Issues addressed from a Japanese perspective are (a) women and social norms of caregiving, (b) feminine identity and caregiving, (c) women in the workforce, and (d) women and caregiving. Implications for research are also discussed.

  2. Social support and adjustment to caring for elder family members: A multi-study analysis.

    Science.gov (United States)

    Smerglia, Virginia L; Miller, Nancy B; Sotnak, Diane L; Geiss, Carrie A

    2007-03-01

    This multi-study analysis systematically examines research findings on relationships between social support and caregiver adjustment to discover whether informal support helps family caregivers. Caring for older relatives is an ongoing stressful life course event and role. Informal social support is often used as a predictor of caregiver adjustment outcomes. It is widely believed to enhance adjustment. Yet the varied research results do not necessarily support this belief. A computer-generated literature search of social sciences and medical databases produced thirty-five caregiving articles, published in refereed journals, which meet study parameters. A coding form was developed to categorize social support and adjustment variables for cross-tabular analyses. The findings show most relationships (61%) between social support and caregiver adjustment are not positively significant. Of the minority of positively significant relationships, neither perceived (available) nor received support is more important and neither instrumental nor socioemotional support is more likely to aid adjustment. Researchers and health care professionals need to explore the negative impact of social support and attributes of caregiver-care recipient relationships.

  3. Depressed Affect and Dimensions of Religiosity in Family Caregivers of Individuals with Dementia.

    Science.gov (United States)

    Winter, Laraine; Moriarty, Helene J; Atte, Faith; Gitlin, Laura N

    2015-08-01

    Religiosity and mood have long been recognized as associated, but some patterns of associations suggest complex relationships. Using a multidimensional measure of religiosity, we explored the possibility that dimensions of religiosity may have (1) different strengths of association and (2) directions of association with depressed mood. We measured five dimensions of religiosity in 1227 family caregivers of persons with dementia, testing associations of each dimension to caregivers' depressive symptoms. In zero-order associations, higher scores on each religiosity dimension were associated with lower depression. Yet in hierarchical multiple regressions models, adjusting for other religiosity dimensions, different dimensions showed either no independent association, an independent association, or an inverse association with depressed mood. Frequency of prayer reversed directions of association-showing higher depression in caregivers who prayed more. Findings underscore the complex and sometimes bidirectional association between depressed mood and religiosity and argue for recognition of distinct dimensions of religiosity.

  4. Can Classroom Emotional Support Enhance Prosocial Development among Children with Depressed Caregivers?

    Science.gov (United States)

    Johnson, Stacy R.; Seidenfeld, Adina M.; Izard, Carroll E.; Kobak, Roger

    2013-01-01

    Preschool children from economically disadvantaged families often experience difficulties in developing prosocial behavior. Risk associated with depressive symptomatology in caregivers (parents and guardians) may further compound these difficulties. The overall objective of the present study was to examine the compensatory effect of Head Start…

  5. A clinical trial of an individualised intervention programme for family caregivers of older stroke victims in Taiwan.

    Science.gov (United States)

    Shyu, Yea-Ing L; Kuo, Li-Min; Chen, Min-Chi; Chen, Sien-Tsong

    2010-06-01

    To explore the long-term effects of a discharge-preparation programme targeting Taiwanese family caregivers of older patients with stroke. Little is known about the effects of interventions for caregivers of patients with stroke in Asian and Chinese families. A randomised experimental design was used. Participants included 158 older patients with stroke (72 in the experimental group and 86 in the control group) and their family caregivers. A caregiver-oriented intervention programme was designed to increase caregiver preparedness, to enhance caregiver perception of balance between competing needs and to satisfy specific needs during the transition between hospitalisation and discharge. Long-term outcomes were measured by caregiver's health-related quality of life, quality of care, stroke patient's self-care ability, patient's health-related quality of life and service utilisation. Longitudinal data were analysed by the generalised estimating equation approach. During the 12 months following discharge of older patients with stroke, caregivers in the experimental group provided significantly better quality of care (beta = 0.45; p = 0.03) than the control group. Between the sixth-twelfth months following discharge, patients in the control group were more likely to be institutionalised than those in the experimental group (chi(2) = 5.11; p = 0.03). Using a sample from Taiwan, this intervention programme succeeded in improving quality of care provided by family caregivers to older patients with stroke and in decreasing the likelihood of their institutionalisation. Older Chinese patients with stroke and their family caregivers can benefit from an individualised programme that prepares caregivers for patient discharge. Similar programmes may be applicable to other countries with Chinese populations.

  6. Family structure and mothers' caregiving of children with cystic fibrosis.

    Science.gov (United States)

    Gayer, Debra; Ganong, Lawrence

    2006-11-01

    The purpose of this investigation is to examine differences in the experiences of mothers of children with cystic fibrosis who are in diverse family structures (first-marriage families, stepfamily households, single-parent households). In particular, mothers' perceptions of children's health, adherence to prescribed treatments, and help received from others were compared and predictors of treatment adherence were examined. Children's health and adherence to treatment regimens were not related to family structure. Mothers had the major responsibility for seeing that cystic fibrosis treatments were followed, regardless of family structure. Single mothers received less help than married and repartnered mothers. Married fathers helped with treatments more than nonresidential divorced fathers and stepfathers. Implications for nursing practice and suggestions for future research are offered.

  7. Self-management support interventions for informal caregivers of people with dementia: a systematic meta review.

    NARCIS (Netherlands)

    Huis in het Veld, J.G.; Verkaik, R.; Mistiaen, P.; Meijel, B. van; Francke, A.

    2015-01-01

    Background: Dementia is a life-threatening disease, requiring a palliative care approach where supporting informal caregivers in managing the symptoms and problems related to the dementia should be part of. However, it is not clear which self-management support interventions are most effective. Aims

  8. Caregivers of Older Adults: Advantages and Disadvantages of Internet-Based Social Support

    Science.gov (United States)

    Colvin, Jan; Chenoweth, Lillian; Bold, Mary; Harding, Cheryl

    2004-01-01

    We explored the perceptions of caregivers of older adults using Internet-based social support networks regarding the unique advantages and disadvantages of online social support. Participants were recruited with permission of Web owners through 15 Web sites that offered social networks, and responses from 63 electronically submitted surveys were…

  9. Self-management support interventions for informal caregivers of people with dementia: a systematic meta review.

    NARCIS (Netherlands)

    Huis in het Veld, J.G.; Verkaik, R.; Mistiaen, P.; Meijel, B. van; Francke, A.

    2015-01-01

    Background: Dementia is a life-threatening disease, requiring a palliative care approach where supporting informal caregivers in managing the symptoms and problems related to the dementia should be part of. However, it is not clear which self-management support interventions are most effective. Aims

  10. Grandparents Raising Grandchildren: The Role of Social Support in Coping with Caregiving Challenges

    Science.gov (United States)

    Gerard, Jean M.; Landry-Meyer, Laura; Roe, Jacqueline Guzell

    2006-01-01

    In this investigation of 133 grandparents with primary responsibility for their grandchildren, we examined the potential moderating role of social support in the association between caregiver stressors and grandparents' general well-being. Enacted formal support buffered the association between grandchild health problems and both grandparent…

  11. Relationship of depression, disability, and family caregiver attitudes to the quality of life of Kuwaiti persons with multiple sclerosis: a controlled study.

    Science.gov (United States)

    Alshubaili, Asmahan F; Awadalla, Abdel W; Ohaeri, Jude U; Mabrouk, Asser A

    2007-09-18

    Assessment of subjective quality of life (QOL) of persons with multiple sclerosis (MS) could facilitate the detection of psychosocial aspects of disease that may otherwise go unrecognized. The objectives of the study were to (i) compare the QOL ratings of relapsing remitting (RRMS) and progressive (PMS) types of MS with those of a general population group and the impression of their family caregivers; and (ii) assess the association of demographic, clinical, treatment, depression, and caregiver variables with patients' QOL. Consecutive clinic attendees at the national neurology hospital were assessed with the 26 -item WHOQOL Instrument, Beck's Depression Inventory and Expanded Disability Scale. Caregivers rated their impression of patients' QOL and attitudes to patients' illness. The 170 patients (60 m, 109 f) consisted of 145(85.3%) with RRMS and 25 with PMS, aged 32.4(SD 8.8), age at onset 27.1(7.7), EDSS score 2.9 (1.8), and 76% were employed. The patients were predominantly dissatisfied with their life circumstances. The RRMS group had higher QOL domain scores (P 0.05) and disability (P QOL scores than the control group (P QOL domains. When we controlled for depression and disability scores, differences between the two MS groups became significant for only one (out of 6) QOL domains. Patients who were younger, better educated, employed, felt less sick and with lesser side effects, had higher QOL. The predictors of patients' overall QOL were disability score, caregiver impression of patients' QOL, and caregiver fear of having MS. Our data indicate that MS patients in stable condition and with social support can hope to have better QOL, if clinicians pay attention to depression, disability, the impact of side effects of treatment and family caregiver anxieties about the illness. The findings call for a regular program of psychosocial intervention in the clinical setting, to address these issues and provide caregiver education and supports, in order to enhance the

  12. Burden in the main caregiver

    Directory of Open Access Journals (Sweden)

    Fabiola Yonte Huete

    2010-09-01

    Full Text Available Objectives: The main objective is to determine the degree of burden in the main caregivers of dependent patients, to analyse the profile of informal caregivers and dependent patients. Their claims and help received with caring, the influence of mental deteriorate and duration of care giving regarding the burden of caregivers.Methods: Descriptive cross-sectional observational study amongst 50 caregivers and dependents. We used descriptive statistics and correlational studies. Results: 86 % of caregivers were women, middle aged, son/daughter of the dependent, married, with basic studies, no work outside the home, the average time in the role of caregiver was 16,96 hours a day and 2,1 free hours a day. 64 % of them received family support and 68 % wish to receive economic aid. It was found that for 38 % of the caregivers there was no burden at all, 34 % of them had a minimum burden and 28 % a greater burden.Conclusion: There are some caregivers with moderate or great burden. Our caregiver wishes to receive economic help. Our research shows that the decrease of mental health and the years of evolution do not have a significant statistically influence on caregivers. It is necessary prioritize the interventions and its recipients, provide solutions for caregivers with a greater burden, trying to keep away “caregiver syndrome”.

  13. Family routines within the ecological niche: An analysis of the psychological well-being of U.S. caregivers of children with disabilities

    Directory of Open Access Journals (Sweden)

    Elizabeth Ann Larson

    2014-05-01

    Full Text Available Using mixed methods, this study examined the relationship of caregivers of children with disabilities’ psychological well-being and their orchestration of daily routines within their ecological niche. Thirty-nine U.S. caregivers completed in-depth interviews, Psychological Well-being Scales (PWB, and Family Time and Routines Index (FTRI. We used a multi-step analysis. Interview data was coded and vignettes created without knowledge of PWB and FTRI ratings. Next, the relationship of quantitative measures was analyzed. Four groups were created using FTRI-extent and PWB means: (1 low routine-low PWB, (2 low routine-high PWB, (3 high routine-low PWB, and (4 high routine-high PWB. We examined qualitative differences in key features between groups. Findings: Total PWB and FTRI scores were not significantly correlated, PWB Purpose in Life and FTRI-extent scores were moderately positively correlated, and PWB Environmental Mastery and FTRI-extent correlation approached significance. Qualitative findings describe caregivers’ structuring of routines, intensity of oversight, support in routines, management of dinner, paid work, and needs for respite. The four groups differed in paid work, household support, degree the child could self-occupy, Environmental Mastery, and opportunities to recuperate. Caregivers with higher levels of well-being and more regular routines did paid work, had supportive spouses, had children who more often could follow routines, had higher Environmental Mastery, could orchestrate a family meal, and had breaks from care in either work or leisure. All Native American caregivers and Mexican American caregivers with spouses were in the high routine-high PWB group. Insight into this complex negotiation between family members within daily routines may provide practitioners a better understanding of how to work within family circles to foster therapeutic alliances, identify focused intervention targets, and promote positive family

  14. Caring for Others: Internet Video-Conferencing Group Intervention for Family Caregivers of Older Adults with Neurodegenerative Disease

    Science.gov (United States)

    Marziali, Elsa; Donahue, Peter

    2006-01-01

    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…

  15. Family Caregiving and the Site of Care: Four Narratives About End-of-Life Care for Individuals with Dementia.

    Science.gov (United States)

    Glass, Anne P

    2016-01-01

    Little is known about end-of-life care for individuals with Alzheimer's disease and other dementias. Four case studies are presented, using data collected by qualitative interviews conducted with family caregivers who were closely involved with end-of-life care for relatives with dementia. The case studies are formatted in two pairs, with one reflecting two deaths occurring at home and the other pair representing two deaths in the nursing home. The cases reveal a range of end-of-life experiences, suggesting that there is not just one "good" path. The extent of care needed, the responsiveness of the individual, the health of the caregiver(s), and the residence and support situations, can all intersect in a variety of ways that make no one scenario the answer for all. Although most people say they would prefer to die at home, in some situations the nursing home can be a satisfactory choice, particularly if hospice is involved. These narrative case studies give the reader insight into the variety of the end-of-life experiences and suggest the environment should be considered as part of the care provision.

  16. Effect of nursing care given at home on the quality of life of patients with stomach cancer and their family caregivers' nursing care.

    Science.gov (United States)

    Bilgin, S; Gozum, S

    2016-12-22

    In Turkey, the high incidences of stomach and oesophageal cancers in East and high incidence of stomach cancer in Northeast regions are remarkable. This study was conducted to identify homecare needs of patients with stomach cancer and their caregivers and the effect of family supportive nursing care on the quality of life of patients and families. The patient and his/her caregiver were assessed with respect to their daily life activities and NANDA was used for the identified nursing diagnoses, NIC for the appropriate interventions and NOC for assessment of the results. This study was conducted in a pre-test, post-test, controlled trial model to identify. The sample of the investigation consisted of 72 patients and 72 caregivers. As a data-collecting instrument, the Quality of Life Scale and Caregiver Quality of Life Index-Cancer were used. The overall quality of life, global health status and emotional and cognitive functions of the patients in the experimental group improved after the interventions. The overall quality of life and global health status was found to be poorer in the control group patients at post-test as compared to pre-test and their physical, role and social functions deteriorated. The caregivers' quality of life in the control group was affected more negatively with respect to the "Disruption in Daily Life" subscale as compared to pre-test values.

  17. The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a qualitative systematic review

    DEFF Research Database (Denmark)

    Lauritzen, Jette; Bjerrum, Merete; Sørensen, Erik Elgaard;

    Background: Support groups are considered an effective way to care for informal caregivers of older adults with dementia and relieve their feelings of stress and burden. Research shows, that participating in support groups seems to be beneficial for the informal caregivers, but with no significant...... the future through virtual configurations of group meetings Conclusion: Peer support is meaningful and beneficial for informal caregivers. The support groups provide a source for obtaining positive emotional support, venting negative feeling and gaining help to deal with the everyday life of caring for older...... improvements in feelings of stress and burden. It is unclear how support groups can produce a meaningful outcome for the informal caregivers. Aim: To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. Method...

  18. HIV Status Disclosure through Family-Based Intervention Supports Parenting and Child Mental Health in Rwanda.

    Science.gov (United States)

    Chaudhury, Sumona; Kirk, Catherine M; Ingabire, Charles; Mukunzi, Sylvere; Nyirandagijimana, Beatha; Godfrey, Kalisa; Brennan, Robert T; Betancourt, Theresa S

    2016-01-01

    Few evidence-based interventions exist to support parenting and child mental health during the process of caregiver HIV status disclosure in sub-Saharan Africa. A secondary analysis of a randomized-controlled trial was conducted to examine the role of family-based intervention versus usual social work care (care as usual) in supporting HIV status disclosure within families in Rwanda. Approximately 40 households were randomized to family-based intervention and 40 households to care as usual. Parenting, family unity, and child mental health during the process of disclosure were studied using quantitative and qualitative research methods. Many of the families had at least one caregiver who had not disclosed their HIV status at baseline. Immediately post-intervention, children reported lower parenting and family unity scores compared with those in the usual-care group. These changes resolved at 3-month follow-up. Qualitative reports from clinical counselor intervention sessions described supported parenting during disclosure. Overall findings suggest adjustments in parenting, family unity, and trust surrounding the disclosure process. Family-based intervention may support parenting and promote child mental health during adjustment to caregiver HIV status disclosure. Further investigation is required to examine the role of family-based intervention in supporting parenting and promoting child mental health in HIV status disclosure.

  19. Qualities of Life of Patients with Psychotic Disorders and Their Family Caregivers: Comparison between Hospitalised and Community-Based Treatment in Beijing, China

    Science.gov (United States)

    Ma, Xin; Weng, Yongzhen; Liang, Wannian

    2016-01-01

    Background Community healthcare in mainland China is still at an early stage. The qualities of life (QOLs) of patients with psychotic disorders undergoing rehabilitation in hospitals or in the community, as well as those of their caregivers, may differ from each other. Objectives The study was performed to evaluate the QOL of patients with psychotic disorders and assess the differences in the QOLs between patients receiving care in diverse settings (hospital vs. the community). Methods This study was a descriptive study, in which all cases were collected from two psychiatric hospitals and five communities. Patients (n = 43) and caregivers (n = 40) in the psychiatric hospitals were grouped according to the length of illness and areas of residence and these criteria were also used to group patients (n = 55) and caregivers (n = 59) in the community. All participants were assessed using the WHOQOL-BREF (Chinese version). ANOVA was adopted to compare the QOL scores among the four groups (cases and caregivers in two settings), while confounding factors, such as age and marital status, were adjusted. Results Among the four groups of participants, namely, hospitalised and community patients and their corresponding caregivers, community samples had a significantly lower QOL score. The QOL score for the social relationships domain of the hospitalised patients’ caregivers was significantly higher than that of the caregivers of community patients (P = 0.019). Conclusion Community patients and their caregivers tend to have lower QOL scores than their hospitalised counterparts. The support of family members is urgently needed to provide better care for patients. PMID:27870906

  20. Aspects of indignity in nursing home residences as experienced by family caregivers

    DEFF Research Database (Denmark)

    Nåden, Dagfinn; Høy, Bente; Lohne, Vibeke

    2013-01-01

    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...

  1. Normalization of Neglect: A Grounded Theory of RNs' Experiences as Family Caregivers of Hospitalized Seniors.

    Science.gov (United States)

    Taverner, Tarnia; Baumbusch, Jennifer; Taipale, Priscilla

    2016-06-01

    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.

  2. The conceptions of care among family caregivers of persons living with HIV/AIDS in Addis Ababa, Ethiopia.

    Science.gov (United States)

    Aga, Fekadu; Kylmä, Jari; Nikkonen, Merja

    2009-01-01

    This focused ethnographic study explores and describes the conceptions of care among family caregivers of people living with HIV/AIDS (PLWAs) in Addis Ababa, Ethiopia. Leininger's theory of culture care diversity and universality is the conceptual anchor of this ethnographic study. Using semistructured interviews and participant observation, 6 key informants and 12 general informants were interviewed in their home in Amharic language. Data were analyzed in Amharic using Leininger's phases of ethnonursing analysis for qualitative data and then translated to English. Four major themes representing family caregivers' conceptions of care were identified: nourishing the PLWA while struggling with poverty, maintenance of cleanliness and hygiene of the person and surroundings, comforting the PLWA, and sacrificing self to sustain the PLWA. Valuable data were gathered about the family caregivers' conceptions of care. Nurses can use this knowledge to design and provide culturally congruent care to family caregivers and PLWAs in the community.

  3. The Attitudes of Chinese Cancer Patients and Family Caregivers toward Advance Directives

    Directory of Open Access Journals (Sweden)

    Qiu Zhang

    2016-08-01

    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.

  4. A Yoga and Compassion Meditation Program Reduces Stress in Familial Caregivers of Alzheimer's Disease Patients

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    M. A. D. Danucalov

    2013-01-01

    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.

  5. Burden, coping and needs for support of caregivers for patients with a bipolar disorder: a systematic review.

    Science.gov (United States)

    van der Voort, T Y G; Goossens, P J J; van der Bijl, J J

    2007-10-01

    This study was aimed to highlight the factors which influence experienced burden, coping and needs for support of caregivers for patients with a bipolar disorder. Research articles meeting content and methodological quality criteria from January 1995 through October 2005 were reviewed. High objective and subjective burden is experienced by these caregivers. Subjective burden is extremely influenced by illness beliefs. High burden is associated more with severity of symptoms (than diagnosis), difficulties in the relationship with patient, lack of support and stigma. Coping is influenced by appraisal and burden. Different phases in the process of caregiving require different coping mechanisms. Little research is available on effectiveness of coping mechanisms and needs for support. Suggestions are nevertheless found in the literature for professional support. Caregivers of patients with a bipolar disorder experience high burden and try to cope in different ways. Little research is available on coping styles and needs for support. However, recommendations can be made to increase support for these caregivers.

  6. Making sense of behavioral disturbances in persons with dementia: Latino family caregiver attributions of Neuropsychiatric Inventory domains

    OpenAIRE

    Hinton, Ladson; Chambers, Darin; Velásquez, Alexandra

    2009-01-01

    The purpose of this study was to describe the nature and frequency of Latino family caregiver attributions for dementia-related neuropsychiatric symptoms. This is a cross-sectional study conducted in the Sacramento, California area. Participants were 30 Latino family caregivers of community-dwelling Latino elderly meeting research criteria for dementia who were selected from an ongoing cohort study of older Latinos (Sacramento Area Latino Study on Aging). Open-ended probes were used to elicit...

  7. [Psychological effects of alcohol misuse on the professional home caregivers in support with elderly people].

    Science.gov (United States)

    Moscato, Alba; Varescon, Isabelle

    2015-12-01

    Very little research is made on professional home caregivers in support of seniors, especially those dealing with alcohol misuse. The aim of this study was to investigate the relationships between professional home caregivers and seniors with alcohol misuse, in terms of job satisfaction, professional life and emotional exhaustion. 99 professional home caregivers completed a professional data questionnaire (ESVP) and an inventory of professional burnout (MBI). Demographic and professional data, as well as dimensions of professional life satisfaction and professional exhaustion questionnaires were analyzed. Out of the 99 participants, 36 professional home caregivers reported difficulties dealing with alcohol misuse in seniors. The mean age of the home caregivers was 35 years old and half of them did not receive any training for support. The majority of them qualified the relationship with the aged as "distant and nonexistent". In contrast, most of them were satisfied with regard to the relationship with the relatives of the subjects, and were almost as many to call it "cordial" as well as "cold distant, non-existent". Job satisfaction was positively correlated with the satisfaction of the relationship with the relatives. Emotional exhaustion was negatively correlated with their job satisfaction in the support of the subjects. This study is, to our knowledge, the first one to highlight the importance for professional home caregivers to have good relationships with the relatives of seniors with alcohol misuse. Research in this area is scarce, despite the development of home care for the elderly, whatever their pathologies, and at the early start of a French ministerial plan on society's adaptation to ageing.

  8. An interprofessional approach to shared decision making: an exploratory case study with family caregivers of one IP home care team.

    Science.gov (United States)

    Légaré, France; Stacey, Dawn; Brière, Nathalie; Robitaille, Hubert; Lord, Marie-Claude; Desroches, Sophie; Drolet, Renée

    2014-07-02

    Within the context of an exploratory case study, the authors assessed the perceptions of family caregivers about the decision-making process regarding relocating their relative and about the applicability of an interprofessional approach to shared decision making (IP-SDM). They also assessed perceptions of health professionals and health managers about IP-SDM. From November 2010 to October 2011, we worked with one IP home care team dedicated to older adults (the case) from a large primary health care organization in Quebec City, Canada. We identified six of their clients who had faced a decision about whether to stay at home or move to a long-term care facility in the past year and interviewed their family caregivers. We explored the decision-making process they had experienced regarding relocating their relative and their perceptions about the applicability of IP-SDM in this context. Attitudes towards IP-SDM and potential barriers to this approach were explored using a focus group with the participating IP home care team, individual interviews with 8 managers and a survey of 272 health professionals from the primary care organization. A hybrid process of inductive and deductive thematic analysis was used and data were triangulated across all sources. Family caregivers reported lack of agreement on the nature of the decision to be made, a disconnection between home care services and relatives' needs, and high cost of long-term care alternatives. Factors influencing their decision included their ability to provide care for their relative. While they felt somewhat supported by the IP home care team, they also felt pressured in the decision. Overall, they did not perceive they had been exposed to IP-SDM but agreed that it was applicable in this context. Results from the survey, focus group and interviews with health professionals and managers indicated they all had a favourable attitude towards IP-SDM but many barriers hampered its implementation in their practice

  9. [Family caregiver burden caused by behavioral and psychological symptoms of dementia: measurement with a new original scale].

    Science.gov (United States)

    Sugiura, Keiko; Ito, Mikiko; Mikami, Hiroshi

    2007-11-01

    The purpose of this study was to measure the caregiver burden caused by behavioral and psychological symptoms of dementia (CBBD) using an originally developed scale and to estimate the CBBD scores in a large sample of family caregivers of elderly people. The subjects were 1,818 users of the public Long-term Care Insurance, randomly stratified and sampled in Higashi-osaka city, Osaka prefecture. Data were collected through mailed, anonymous self-report questionnaires. The survey was conducted in October 2003. We created a 10-item CBBD scale based on previous studies on caregivers of dementia. The CBBD scale was applied to all caregivers regardless of dementia symptoms, and we also collected the following information: demographic data of the care-recipients and caregivers, the level of cognitive disorders of the care-recipient and the overall subjective caregiver burden. All items of the CBBD scale were selected at higher percentages by caregivers of care-recipients with cognitive disorders than caregivers of care-recipients without cognitive disorders. In particular, the relative risk and odds ratio of caregivers of care-recipients with cognitive disorder was higher in items such as 'the caregiver feels fear and anxiety about the care-recipient's unpredictable behavior', 'the care-recipient doesn't understand what the caregiver says', 'the caregiver feels irritated with incomprehensible care-recipient's behavior' which pose psychological stress or pressure on caregivers. On the other hand, the relative risk and odds ratio of the overall subjective caregiver burden was lower than that of any item of the CBBD scale. Furthermore, all CBBD items were related to symptoms of dementia (aroused/paranoid behavior, memory disorder, cognitive dysfunction, pica behavior). The CBBD scale had sensitivity for the care-recipient's cognitive disorder. In addition, it can detect more precisely the caregiver burden such as psychological stress or pressure due to the care

  10. Alzheimer's Caregiving

    Science.gov (United States)

    ... version of this page please turn Javascript on. Alzheimer's Caregiving After the Diagnosis Now that your family ... the news with family and friends. Learning About Alzheimer’s Sometimes, you may feel that you don't ...

  11. Parental Stress and Social Support of Caregivers of Children With Cerebral Palsy

    Directory of Open Access Journals (Sweden)

    Mayara Barbosa Sindeaux Lima

    2016-08-01

    Full Text Available Abstract Stress and social support are relevant variables for understanding the impact of disability on the care relationship. Thus, this study investigates the association between the parental stress index, social support indicators, and the sociodemographic variables of caregivers of children with cerebral palsy in a capital city of the Eastern Amazon. The following instruments were applied to 100 caregivers: the Sociodemographic Inventory, the Gross Motor Function Classification System, the Parenting Stress Index, and the Medical Outcomes Study Social Support Survey. For data analysis, descriptive statistics were used, in addition to techniques of multivariate analysis. It was found that most participants had high parental stress and a high perception of social support. Specific aspects of the perception of social support and sociodemographic indicators were associated with stress. This knowledge favors the design of more assertive interventions because it outlines the aspects of these variables that appear to have a more effective impact on parental stress.

  12. Silent strain of caregiving: exploring the best predictors of distress in family carers of geriatric patients

    Directory of Open Access Journals (Sweden)

    Bień-Barkowska K

    2017-02-01

    Full Text Available Katarzyna Bień-Barkowska,1 Halina Doroszkiewicz,2 Barbara Bień2 1Institute of Econometrics, Warsaw School of Economics, Warsaw, 2Department of Geriatrics, Medical University of Bialystok, Bialystok, Poland Objectives: The aim of this article was to identify the best predictors of distress suffered by family carers (FCs of geriatric patients.Methods: A cross-sectional study of 100 FC-geriatric patient dyads was conducted. The negative impact of care (NIoC subscale of the COPE index was dichotomized to identify lower stress (score of ≤15 on the scale and higher stress (score of ≥16 on the scale exerted on FCs by the process of providing care. The set of explanatory variables comprised a wide range of sociodemographic and care-related attributes, including patient-related results from comprehensive geriatric assessments and disease profiles. The best combination of explanatory variables that provided the highest predictive power for distress among FCs in the multiple logistic regression (LR model was determined according to statistical information criteria. The statistical robustness of the observed relationships and the discriminative power of the model were verified with the cross-validation method.Results: The mean age of FCs was 57.2 (±10.6 years, whereas that of geriatric patients was 81.7 (±6.4 years. Despite the broad initial set of potential explanatory variables, only five predictors were jointly selected for the best statistical model. A higher level of distress was independently predicted by lower self-evaluation of health; worse self-appraisal of coping well as a caregiver; lower sense of general support; more hours of care per week; and the motor retardation of the cared-for person measured with the speed of the Timed Up and Go (TUG test.Conclusion: Worse performance on the TUG test was only the patient-related predictor of distress among the variables examined as contributors to the higher NIoC. Enhancing the mobility of

  13. Overlooking Informal Dementia Caregivers' Burden.

    Science.gov (United States)

    Riedel, Oliver; Klotsche, Jens; Wittchen, Hans-Ulrich

    2016-07-01

    Patients with Alzheimer's disease (AD) need early caregiver support. Caregivers often have poor health, but usually do not have time to seek medical advice for their own conditions. Patients' physicians, who are frequently the sole medical practitioner caregivers contact regularly, have an important function in recognizing family caregivers' burdens. The current study investigated to what extent medical practitioners recognized family caregivers' problems. In a two-staged survey in neurology outpatient care, caregivers of patients with mild or moderate AD were enrolled and assessed by physicians regarding their physical and mental burden, as well as need for help and advice about AD. Subsequently, caregivers' mental health was evaluated in a comprehensive diagnostic interview by blinded psychologists. Overall, 73.7% of caregivers had at least one somatic condition and 43.7% had clinically relevant depressive symptoms (of these, 37.5% met criteria for major depression). The findings suggest that the burden of a substantial proportion of affected family caregivers is overlooked. [Res Gerontol Nurs. 2016; 9(4):167-174.]. Copyright 2016, SLACK Incorporated.

  14. Caregiver Objective Burden and Assessments of Patient-Centered, Family-Focused Care for Frail Elderly Veterans

    Science.gov (United States)

    Rose, Julia Hannum; Bowman, Karen F.; O'Toole, Elizabeth E.; Abbott, Katherine; Love, Thomas E.; Thomas, Charles; Dawson, Neal V.

    2007-01-01

    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…

  15. Caring for the frail elderly at home: toward a theoretical explanation of the dynamics of poor quality family caregiving.

    Science.gov (United States)

    Phillips, L R; Rempusheski, V F

    1986-07-01

    Using the grounded theory approach, 39 family caregivers were theoretically sampled using newspaper advertising to explore their perceptions of providing home care for frail elders and to generate a theoretical model that describes the dynamics of good quality and poor quality family caregiving; explains the relationships among certain contextual and perceptual variables and the behaviors exchanged by elders and caregivers; and identifies points where interventions by nurses could be effective. The model consists of five constructs that were identified from the data and were staged within the framework provided by symbolic interactionism and social exchange theory. The five constructs and two related driving forces provide a partial explanation for the quality of family caregiving and a beginning explanation for the phenomenon of elder abuse.

  16. Prolonged Grief in Palliative Family Caregivers: A Pilot Study in a Portuguese Sample.

    Science.gov (United States)

    Coelho, Alexandra; Delalibera, Mayra; Barbosa, António; Lawlor, Peter

    2015-01-01

    Caregivers are particularly vulnerable to experience intense levels of distress following the loss. The aim of this prospective pilot study is to determine the incidence of prolonged grief disorder symptoms among caregivers. A total of 73 bereaved families responded to the Prolonged Grief Disorder Evaluation Instrument (PG-13) at 6 and 12 months following their loss. The incidence of prolonged grief disorder at the first assessment was 28.8%, and it decreased to 15.1% at the second assessment. The prevalence of prolonged grief disorder declined significantly over time (p = .041). In the second evaluation, six bereaved individuals continued to meet criteria for a diagnosis of prolonged grief disorder, 15 remitted, and 4 new (incident) cases emerged. The important differences in values that occur after 12 months suggest time is important in distinguishing between those at risk for persistent distress and those whose grief symptomatology will decrease with time.

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

    Directory of Open Access Journals (Sweden)

    Martin Orrell

    2017-03-01

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

  18. FAMily-Oriented Support (FAMOS)

    DEFF Research Database (Denmark)

    Salem, Hanin; Johansen, Christoffer; Schmiegelow, Kjeld

    2017-01-01

    by tracking procedures and parents’ evaluations. Results: A total of 68 families (68 mothers, 60 fathers, 68 children with cancer and 73 siblings) were enrolled, with a participation rate of 62% of families. Fathers were highly represented (88% of families); also families with single parents (12%) and parents...

  19. A critical review of Singapore's policies aimed at supporting families caring for older members.

    Science.gov (United States)

    Mehta, Kalyani K

    2006-01-01

    This article critically examines the family-oriented social policies of the Singapore government aimed at supporting families caring for older members. The sectors focused on are financial security, health, and housing. Singaporeans have been reminded that the family should be the first line of defense for aging families, followed by the community - the state would step in as the last resort. Drawing from recent research and examination of the state policies, the author argues that more should be done to help family caregivers looking after elder relatives. Recommendations for innovative ways to recognize and reward family carers conclude the paper.

  20. Empowering caregivers: Impact analysis of FamilyLink Education Programme (FLEP) in Hong Kong, Taipei and Bangkok

    Science.gov (United States)

    Wei, Grace F. W.; Lee, Sing; Choovanichvong, Somrak; Wong, Frank H. T.

    2013-01-01

    Background: Education and support for caregivers is lacking in Asia and the peer-led FamilyLink Education Programme (FLEP) is one of the few provisions to address this service gap. This study aims to evaluate quantitatively its efficacy in reducing subjective burdens and empowering the participants. Method: One hundred and nine caregiver participants in three Asian cities were successfully surveyed at pre-intervention, post-intervention and six-month intervals with a number of standard inventories. Mixed analysis of variance (ANOVA) procedures showed significant programme impact over time intervals for all sites, and subsequently an empowerment measurement model was tested. Results: FLEP was found effective in reducing worry and displeasure, significantly improving intra-psychic strain, depression and all empowerment measures. The measurement model had an acceptable good fit. Baseline difference showed no interference with the programme efficacy. Conclusions: Apart from the initial support for FLEP, the current study also provides some hindsight on the empowerment practice in mental health for Asia, whose sociocultural political contexts are vastly different from that of the developed countries. It remains to be seen whether qualitative data or more stringent research design will yield consistent results and whether FLEP can also work in rural areas. PMID:21971981

  1. Early counselling and support for patients with mild Alzheimer's disease and their caregivers: a qualitative study on outcome

    DEFF Research Database (Denmark)

    Sørensen, Lisbeth V; Waldorff, Frans B; Waldemar, Gunhild

    2008-01-01

    revealed that patients found support groups relevant: they found it stimulating to be with peers, it supported their self-esteem, and it supported them in finding new ways of managing everyday life and social relations. During and after the intervention, caregivers were better able to cope....... CONCLUSION: Early tailored counselling and support may improve patients' and caregivers' opportunities to adapt to the challenges of Alzheimer's disease and to maintain well-being....

  2. Measuring the Caregiver Burden of Caring for Community-Residing People with Alzheimer's Disease.

    Directory of Open Access Journals (Sweden)

    Hongmei Yu

    Full Text Available To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer's disease (AD.We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients' Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers' level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors.A lower level of cognitive function in patients (r = -0.28, p<0.001 and longer hours of caregiving (r = 0.17, p = 0.019 were related to increased caregiver burden. Greater social support (r = -0.23, p<0.001, family function (r = -0.17, p = 0.015 and caregiving experience (r = -0.16, p = 0.012 were related to decreased caregiver burden. Social support (r = 0.16, p = 0.040 and family

  3. Are there Gender, Racial, or Relationship Differences in Caregiver Task Difficulty, Depressive Symptoms, and Life Changes among Stroke Family Caregivers?

    Science.gov (United States)

    Jessup, Nenette M.; Bakas, Tamilyn; McLennon, Susan M.; Weaver, Michael T.

    2016-01-01

    Objective To examine differences in caregiver perceptions of task difficulty, depressive symptoms, and life changes based on caregiver characteristics of gender, race, and type of relationship to the person with stroke. Methods A sample of 243 stroke caregivers (females n =191; males n =52; non-African Americans n= 184; African Americans n=59; non-spouses n =127; spouses n =116) were interviewed by telephone within 8 weeks of the survivor’s discharge to home. Measures included the Oberst Caregiving Burden Scale (OCBS) for task difficulty, Patient Health Questionnaire (PHQ-9) for depressive symptoms, and Bakas Caregiving Outcomes Scale (BCOS) for life changes. Three general linear models computed differences in OCBS, PHQ9, and OCBS scores. Results Significant differences were found on the OCBS for females (pstroke caregivers are relatively more likely to experience task difficulty, depressive symptoms, and negative life changes as a result of providing care. African American spouses were also at risk. Tailoring interventions based on caregivers’ characteristics may improve outcomes. PMID:25141098

  4. Silent strain of caregiving: exploring the best predictors of distress in family carers of geriatric patients

    Science.gov (United States)

    Bień-Barkowska, Katarzyna; Doroszkiewicz, Halina; Bień, Barbara

    2017-01-01

    Objectives The aim of this article was to identify the best predictors of distress suffered by family carers (FCs) of geriatric patients. Methods A cross-sectional study of 100 FC-geriatric patient dyads was conducted. The negative impact of care (NIoC) subscale of the COPE index was dichotomized to identify lower stress (score of ≤15 on the scale) and higher stress (score of ≥16 on the scale) exerted on FCs by the process of providing care. The set of explanatory variables comprised a wide range of sociodemographic and care-related attributes, including patient-related results from comprehensive geriatric assessments and disease profiles. The best combination of explanatory variables that provided the highest predictive power for distress among FCs in the multiple logistic regression (LR) model was determined according to statistical information criteria. The statistical robustness of the observed relationships and the discriminative power of the model were verified with the cross-validation method. Results The mean age of FCs was 57.2 (±10.6) years, whereas that of geriatric patients was 81.7 (±6.4) years. Despite the broad initial set of potential explanatory variables, only five predictors were jointly selected for the best statistical model. A higher level of distress was independently predicted by lower self-evaluation of health; worse self-appraisal of coping well as a caregiver; lower sense of general support; more hours of care per week; and the motor retardation of the cared-for person measured with the speed of the Timed Up and Go (TUG) test. Conclusion Worse performance on the TUG test was only the patient-related predictor of distress among the variables examined as contributors to the higher NIoC. Enhancing the mobility of geriatric patients through suitably tailored kinesitherapeutic methods during their hospital stay may mitigate the burden endured by FCs. PMID:28203067

  5. The TRIO Framework: Conceptual insights into family caregiver involvement and influence throughout cancer treatment decision-making.

    Science.gov (United States)

    Laidsaar-Powell, Rebekah; Butow, Phyllis; Charles, Cathy; Gafni, Amiram; Entwistle, Vikki; Epstein, Ronald; Juraskova, Ilona

    2017-11-01

    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.

  6. Telephone-based problem-solving intervention for family caregivers of stroke survivors: a randomized controlled trial.

    Science.gov (United States)

    Pfeiffer, Klaus; Beische, Denis; Hautzinger, Martin; Berry, Jack W; Wengert, Julia; Hoffrichter, Ruth; Becker, Clemens; van Schayck, Rudolf; Elliott, Timothy R

    2014-08-01

    Intervention trials for stroke caregivers after the early poststroke period are lacking. To address this gap, we examined the effectiveness of a problem-solving intervention (PSI) for stroke caregivers who provided care for at least 6 months and who experienced significant strain in their role. One hundred twenty-two family caregivers (age = 66.2 years, 77.9% female) were randomly allocated to a PSI or control group. The PSI was composed of 2 home visits and 18 telephone calls delivered over a 3-month intensive intervention and a 9-month maintenance period. PSI and control groups received monthly information letters in addition to usual care. Primary caregiver outcomes were depressive symptoms (measure: Center for Epidemiologic Studies-Depression Scale) and sense of competence (measure: Sense of Competence Questionnaire). In covariance analyses, caregivers of the PSI group showed significantly lower levels of depressive symptoms after 3 months (p caregiver social-problem-solving abilities. Although beneficial effects were observed among caregivers in the PSI group, the lack of effects on problem-solving abilities implies other characteristics of the intervention might account for these benefits. The relative intensity and therapeutic contact during the first 3 months of the intervention may be particularly helpful to caregivers of stroke survivors. PsycINFO Database Record (c) 2014 APA, all rights reserved.

  7. Reducing the distance in distance-caregiving by technology innovation

    Directory of Open Access Journals (Sweden)

    Lazelle E Benefield

    2007-07-01

    Full Text Available Lazelle E Benefield1, Cornelia Beck21College of Nursing, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA; 2Pat & Willard Walker Family Memory Research Center, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USAAbstract: Family caregivers are responsible for the home care of over 34 million older adults in the United States. For many, the elder family member lives more than an hour’s distance away. Distance caregiving is a growing alternative to more familiar models where: 1 the elder and the family caregiver(s may reside in the same household; or 2 the family caregiver may live nearby but not in the same household as the elder. The distance caregiving model involves elders and their family caregivers who live at some distance, defined as more than a 60-minute commute, from one another. Evidence suggests that distance caregiving is a distinct phenomenon, differs substantially from on-site family caregiving, and requires additional assistance to support the physical, social, and contextual dimensions of the caregiving process. Technology-based assists could virtually connect the caregiver and elder and provide strong support that addresses the elder’s physical, social, cognitive, and/or sensory impairments. Therefore, in today’s era of high technology, it is surprising that so few affordable innovations are being marketed for distance caregiving. This article addresses distance caregiving, proposes the use of technology innovation to support caregiving, and suggests a research agenda to better inform policy decisions related to the unique needs of this situation.Keywords: caregiving, family, distance, technology, elders

  8. Attentional avoidant biases as mediators in the association between experiential avoidance and blood pressure in dementia family caregivers.

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    Márquez-González, María; Cabrera, Isabel; Losada, Andrés; Knight, Bob G

    2017-03-02

    Experiential avoidance in caregiving (EAC) has been found to be related with dementia family caregivers´ distress and blood pressure (BP). The association between EAC and avoidant attentional biases to emotional stimuli in dementia caregivers, and the potential mediating role of these attentional biases in the association between EAC and increased BP are explored. Seventy nine dementia family caregivers performed a dot-probe task with emotional pictures (distressing and positive) varying in content (general vs. caregiving-related (CR)) and time of exposure (100 vs. 500 ms). They also completed measures of EAC, anxiety, depression, alexithymia and rumination, and their BP was measured. EAC was associated with avoidant attentional biases to CR emotional pictures and negative pictures in general at 100 ms. Experiential Avoidance in Caregiving Questionnaire (EACQ) 'avoidant behaviors' and EACQ 'intolerance of negativity' factors were associated with diastolic and systolic BP, respectively, with attentional avoidance of CR emotional pictures (distressing and positive, respectively) mediating this association. Attentional avoidance of CR emotional stimuli may be the link between EAC and increased BP, as it prevents emotional processing and facilitates the maintenance of physiological activation. EAC may pose a risk for cardiovascular disease in dementia caregivers.

  9. Providing Family Support through Community Guides.

    Science.gov (United States)

    Romer, Lyle T.; Richardson, Mary L.; Nahom, Debbie; Aigbe, Elizabeth; Porter, Alice

    2002-01-01

    The Family Support Opportunities program is a Washington state program that connects individuals with extensive knowledge of local communities (community guides) with families of individuals with intellectual disabilities. A survey of 312 families found that when families indicated satisfaction with their community guides, they also reported a…

  10. Developing "Care Assistant": A smartphone application to support caregivers of children with acute lymphoblastic leukaemia.

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    Wang, Jingting; Yao, Nengliang; Wang, Yuanyuan; Zhou, Fen; Liu, Yanyan; Geng, Zhaohui; Yuan, Changrong

    2016-04-01

    Acute lymphoblastic leukaemia (ALL) is the most common childhood malignancy. Caring for children with ALL is an uncommon experience for parents without medical training. They urgently need professional assistance when their children are recovering at home. This paper documents the process of developing an Android application (app) "Care Assistant" for family caregivers of children with ALL. Key informant interviews and focus group studies were used before programming the app. The key informants and focus group members included: caregivers of children with ALL, cancer care physicians and nurses, and software engineers. We found several major challenges faced by caregivers: limited access to evidence-based clinic information, lack of financial and social assistance, deficient communications with doctors or nurses, lack of disease-related knowledge, and inconvenience of tracking treatments and testing results. This feedback was used to develop "Care Assistant". This app has eight modules: personal information, treatment tracking, family care, financial and social assistance, knowledge centre, self-assessment questionnaires, interactive platform, and reminders. We have also developed a web-based administration portal to manage the app. The usability and effectiveness of "Care Assistant" will be evaluated in future studies. © The Author(s) 2015.

  11. Subjective burden, psychological distress, and perceived social support among caregivers of persons with schizophrenia

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    Elangovan Aravind Raj

    2016-01-01

    Full Text Available Background/Objectives: Caregivers of persons with schizophrenia experience more stress due to the nature of the symptoms as well as the prolonged duration of illness. The current study is an attempt to understand the subjective components of burden, distress, and social support in caregivers of patients with schizophrenia in Indian context and its linkage with their sociodemographic profile and patient′s illness profile. Methodology: Thirty-two caregivers of patients with schizophrenia from a psychiatric inpatient facility of a multidisciplinary hospital were studied using descriptive research design. Results: The result shows that negative symptoms of patients, subdomains of burden (burden on well-being, marital burden, burden on relations, and burden due to perceived severity were the predictors of subjective burden. Burden on well-being and respondent′s age were predictors of psychological distress. Conclusion: Inclusive treatment services would enhance the quality of life of the caregivers and would help them in ensuring long-term care for the patients with schizophrenia.

  12. For Better or for Worse: Lifeworld, System and Family Caregiving for a Chronic Genetic Disease

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    Niclas Hagen

    2012-11-01

    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.

  13. Understanding the Impact of Trauma on Family Life From the Viewpoint of Female Caregivers Living in Urban Poverty.

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    Kiser, Laurel J; Nurse, Winona; Lucksted, Alicia; Collins, Kathryn S

    2008-09-01

    Children and their families living in poor, inner-city neighborhoods are at high risk for experiencing multiple traumas. This article describes findings from a qualitative study designed to explore the impact of chronic traumas on family life through the voices of primarily African American caregivers coping with urban poverty. Structured interviews are conducted with 16 caregivers of children ages 6 to 9 years who had been exposed to multiple traumas and had symptoms of posttraumatic stress disorder. Caregivers explain changing daily routines to accommodate child distress and promoting positive family processes such as increased protectiveness. They also describe various roles that religion/spirituality play in their coping with trauma, including finding comfort in the faith that God controls what happens in their lives. These themes are discussed with regard to theory and practical applications for assisting traumatized families.

  14. A benefit-finding intervention for family caregivers of persons with Alzheimer disease: study protocol of a randomized controlled trial

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    Cheng Sheung-Tak

    2012-07-01

    Full Text Available Abstract Background Caregivers of relatives with Alzheimer’s disease are highly stressed and at risk for physical and psychiatric conditions. Interventions are usually focused on providing caregivers with knowledge of dementia, skills, and/or support, to help them cope with the stress. This model, though true to a certain extent, ignores how caregiver stress is construed in the first place. Besides burden, caregivers also report rewards, uplifts, and gains, such as a sense of purpose and personal growth. Finding benefits through positive reappraisal may offset the effect of caregiving on caregiver outcomes. Design Two randomized controlled trials are planned. They are essentially the same except that Trial 1 is a cluster trial (that is, randomization based on groups of participants whereas in Trial 2, randomization is based on individuals. Participants are randomized into three groups - benefit finding, psychoeducation, and simplified psychoeducation. Participants in each group receive a total of approximately 12 hours of training either in group or individually at home. Booster sessions are provided at around 14 months after the initial treatment. The primary outcomes are caregiver stress (subjective burden, role overload, and cortisol, perceived benefits, subjective health, psychological well-being, and depression. The secondary outcomes are caregiver coping, and behavioral problems and functional impairment of the care-recipient. Outcome measures are obtained at baseline, post-treatment (2 months, and 6, 12, 18 and 30 months. Discussion The emphasis on benefits, rather than losses and difficulties, provides a new dimension to the way interventions for caregivers can be conceptualized and delivered. By focusing on the positive, caregivers may be empowered to sustain caregiving efforts in the long term despite the day-to-day challenges. The two parallel trials will provide an assessment of whether the effectiveness of the intervention

  15. The relationship between social support and anxiety among caregivers of children in HIV-endemic South Africa.

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    Casale, Marisa; Wild, Lauren; Cluver, Lucie; Kuo, Caroline

    2014-01-01

    Caring for children can be a source of joy and fulfilment, but also a source of stress, especially for caregivers living with illness and/or coping with difficult socio-economic conditions. Risks for poor caregiver mental health are especially salient in many parts of southern Africa affected by a generalised HIV-epidemic, high rates of physical illness, difficult livelihood conditions and an increasing number of orphaned and vulnerable children in need of care. Given limited availability and low uptake of formal mental health services in South Africa, the potential protective role of informal community or "social" resources for caregiver populations requires greater attention. To our knowledge, this is the first study to quantitatively assess the relationship between social support and symptomatic anxiety among caregivers of children living in HIV-endemic southern African communities. The data are from household survey interviews with 2477 adult primary caregivers of children aged 10-17 years living in two (urban and rural) resource-deprived HIV-endemic South African communities. Hierarchical logistic regression analysis with interaction terms was conducted to assess whether HIV and other illness were significant stressors for caregiver anxiety, whether social support had main or stress-buffering protective effects on anxiety and whether gender moderated the association between social support and anxiety. Our findings showed significant main effects of social support on caregiver anxiety, but no evidence of stress-buffering effects of support or of gender moderating the support-anxiety relationship. This suggests that social support is a general mental health resource for both male and female caregivers of children in these HIV-endemic communities, regardless of whether they are facing specific stressors related to HIV or other illness. Our results highlight the importance of paying greater attention to the social environment when designing and implementing

  16. Burden of care, social support, and sense of coherence in elderly caregivers living with individuals with symptoms of dementia.

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    Stensletten, Kari; Bruvik, Frøydis; Espehaug, Birgitte; Drageset, Jorunn

    2016-11-01

    Family members are often the care providers of individuals with dementia, and it is assumed that the need for this will increase. There has been little research into the association between the burden of care and the caregiver's sense of coherence or receipt of social support. This study examined the relationship between the social support subdimensions and sense of coherence and the burden of care among older people giving care to a partner with dementia. The study was a cross-sectional observation study of 97 individuals, ≥65 years old and living with a partner who had symptoms of dementia. We used the Informant Questionnaire on Cognitive Decline in the Elderly, the Relative Stress Scale, the Social Provisions Scale, the Sense of Coherence Scale, and a questionnaire on sociodemographic variables. We used multiple regression analysis in a general linear model procedure. We defined statistical significance as p dementia. Qualitative studies could provide deeper understanding of the variation informal caregivers experience when living together with their partner with dementia.

  17. A Synthesis Of Knowledge About Caregiver Decision Making Finds Gaps In Support For Those Who Care For Aging Loved Ones.

    Science.gov (United States)

    Garvelink, Mirjam M; Ngangue, Patrice A G; Adekpedjou, Rheda; Diouf, Ndeye T; Goh, Larissa; Blair, Louisa; Légaré, France

    2016-04-01

    We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making. Our results indicate that there have been insufficient quantitative evaluations of interventions to involve caregivers in decision making with seniors and that the evaluations that do exist found few clinically significant effects. Elements of usual care that received positive evaluations were the availability of a decision coach and a supportive decision-making environment. Additional rigorously evaluated interventions are needed to help caregivers be more involved in decision making with seniors.

  18. Relationship of depression, disability, and family caregiver attitudes to the quality of life of Kuwaiti persons with multiple sclerosis: a controlled study

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    Ohaeri Jude U

    2007-09-01

    Full Text Available Abstract Background Assessment of subjective quality of life (QOL of persons with multiple sclerosis (MS could facilitate the detection of psychosocial aspects of disease that may otherwise go unrecognized. The objectives of the study were to (i compare the QOL ratings of relapsing remitting (RRMS and progressive (PMS types of MS with those of a general population group and the impression of their family caregivers; and (ii assess the association of demographic, clinical, treatment, depression, and caregiver variables with patients' QOL. Methods Consecutive clinic attendees at the national neurology hospital were assessed with the 26 -item WHOQOL Instrument, Beck's Depression Inventory and Expanded Disability Scale. Caregivers rated their impression of patients' QOL and attitudes to patients' illness. Results The 170 patients (60 m, 109 f consisted of 145(85.3% with RRMS and 25 with PMS, aged 32.4(SD 8.8, age at onset 27.1(7.7, EDSS score 2.9 (1.8, and 76% were employed. The patients were predominantly dissatisfied with their life circumstances. The RRMS group had higher QOL domain scores (P 0.05 and disability (P Conclusion Our data indicate that MS patients in stable condition and with social support can hope to have better QOL, if clinicians pay attention to depression, disability, the impact of side effects of treatment and family caregiver anxieties about the illness. The findings call for a regular program of psychosocial intervention in the clinical setting, to address these issues and provide caregiver education and supports, in order to enhance the quality of care.

  19. A family-oriented treatment program for youths with ketamine abuse and their caregivers: a pilot study in Taiwan.

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    Wang, Liang-Jen; Lu, Shing-Fang; Chou, Wen-Jiun; Chong, Mian-Yoon; Wang, Yao-Hsing; Hsieh, Yu-Lian; Lee, Yi-Hsuan; Chen, Ching

    2015-01-01

    The abuse of ketamine by youths has grown into a serious public health issue. However, a reliable and efficient treatment has still not been found for youths who abuse ketamine. This pilot study investigated the effects of a family-oriented treatment program for ketamine-using youths and their caregivers. To carry out this study, 42 youths with ketamine use (mean age 16.6±1.1 years) who were referred to take part in a 10-week treatment program based on motivational enhancement principles were selected, as were their principal caregivers (mean age 46.4±7.1 years), who were similarly referred to take part in a 10-week training program for parenting skills. The study had the youths complete the Chinese Craving Beliefs Questionnaire, the Adolescents' Behavior problem Scale, and the Family APGAR both immediately before and after the program. Likewise, the youths' caregivers completed the Family APGAR, the 12-item version of the Chinese Health Questionnaire, and the Parenting Stress Index. Of the 42 youth-caregiver pairs that took part in this study, 37 (88%) completed the 10-week program and both sets of assessments. After the treatment, the participating youths' substance cravings declined (t=3.88, Pfamily function, as perceived by the participating caregivers, significantly increased (t=2.22, P=0.033). The improvement in caregivers' perceptions of family function were positively related to the improvement of the caregivers' health status (r=-0.36, P=0.022). According to its results, this pilot study submits that family-oriented treatment programs may be considered a potentially effective treatment option for youths who abuse ketamine. Additional studies with larger sample sizes, as well as longer follow-up periods, are necessary to verify whether this type of treatment also prevents youths using ketamine from relapsing.

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

    Science.gov (United States)

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

    2016-09-01

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

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

    Science.gov (United States)

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

    2017-01-01

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

  2. Development and preliminary evaluation of the Child Feeding Guide website and app: A tool to support caregivers with promoting healthy eating in children

    Directory of Open Access Journals (Sweden)

    Emma Haycraft

    2015-10-01

    benefit from it. Health professionals and caregivers with young children were asked to use the newly-developed Child Feeding Guide and provide feedback on its usability, content, appearance and novelty. Results: Over 85% of health professionals agreed that the Child Feeding Guide contains useful information, is a beneficial resource, and is easy to use. 95% would recommend it to the families that they work with. 80% of caregivers reported that using it helped them to better understand their children’s eating behaviour. Caregivers commented that using the Child Feeding Guide had made them aware of how their feeding behaviours can inadvertently affect their child. Other features of the Child Feeding Guide were identified as beneficial, such as: the provision of advice alongside practical and realistic methods for improving mealtimes; tips for not using food for rewards or for comfort; information on common feeding pitfalls. Caregivers also reported finding the Child Feeding Guide novel, interesting and educational, and easy to use. Conclusions: Preliminary user feedback suggests that the Child Feeding Guide is filling a critical gap in available support resources. Caregivers and health professionals report that it is easy to use, helpful and accessible. While initial user testing of the Child Feeding Guide confirms its value, further formal testing of this resource is required prior to wider-scale roll-out.

  3. Music therapy with Alzheimer's patients and their family caregivers: a pilot project.

    Science.gov (United States)

    Brotons, Melissa; Marti, Patricia

    2003-01-01

    The purpose of th