Journal articles on the topic 'Informal family caregivers'
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1
Savla, Jyoti, Karen Roberto, and Rosemary Blieszner. "CARE NETWORKS OF RURAL APPALACHIAN FAMILY CAREGIVERS AND PERSONS LIVING WITH DEMENTIA." Innovation in Aging 6, Supplement_1 (November 1, 2022): 194. http://dx.doi.org/10.1093/geroni/igac059.776.
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Abstract Dementia care research typically focuses on primary family caregivers with limited consideration of their engagement with a broader care network and the geographic area in which they reside. Using a mixed-methods approach, we analyzed care networks of 163 primary caregivers and their relative living with dementia in rural Virginia. Six distinct care network types emerged based on the primary caregiver's gender, relationship to the person living with dementia, and presence of other informal caregivers. Networks differed by the caregiver’s emotional connectivity with family/friends and feelings of caregiver strain, role overload, and loneliness. Caregivers’ service use attitudes and support service utilization varied across network types and across divergent economic resources of the rural counties in which families resided. Findings establish a framework for understanding the types and influences of care networks and tailoring services to support dementia family caregivers in diverse rural areas.
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Strang, Susann, Josefin Fährn, Peter Strang, Agneta Ronstad, and Louise Danielsson. "Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals." BMJ Open 9, no. 8 (August 2019): e028720. http://dx.doi.org/10.1136/bmjopen-2018-028720.
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ObjectivesInformal caregivers of patients with chronic obstructive pulmonary disease (COPD) experience a heavy caregiver burden, but few studies have explored what support they need. The aim of this study was to describe perceptions of healthcare support to informal caregivers, both from the family caregiver’s and the staff’s perspective.DesignA qualitative interview study involving semi-structured interviews and analysed with content analysis.ParticipantsIn total, 54 participated: 36 informal caregivers of patients with severe (stage 3–4) COPD and 17 healthcare staff.ResultsTwo main themes emerged from the analysis: (1) Ambiguity impedes provision of support. Both caregivers and staff experienced ambiguity. The informal caregivers needed emotional, practical and informational support but talked about unclear expectations, while the staff described an uncertainty about their duties regarding the families. There were no routines to unburden the families. Moreover, language and cultural barriers hampered their efforts. (2) Knowledgeable and perceptive communication is key to support. Both caregivers and staff described positive experiences of dialogue. The dialogue may facilitate means to caregiver support and was a support in itself.ConclusionsOur findings suggest that strategies and routines for caregiver support, including communication skills among the staff, should be developed, to move toward the family perspective advocated in palliative- and nursing family care.
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Blaževičienė, Aurelija, Alina Vaškelytė, and Aušra Kunčienė. "THE ROLE OF INFORMAL CAREGIVERS FROM THE COMMUNITY NURSE’S PERSPECTIVE: QUALITATIVE STUDY." Health Sciences 31, no. 7 (December 14, 2021): 181–89. http://dx.doi.org/10.35988/sm-hs.2021.242.
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Patients with chronic health care conditions who require long-tern care are nursed at home, therefore, there is a shift in responsibility for their care from paid formal caregivers to unpaid family members. Aim of this study was to assess the role of informal caregiver’s in-home care from the community nurse’s perspective. Thirty-one nurses, providing home care services to patients with special needs requiring constant care, participated in five semi-structured focus-group discussions. The data analysis was based on descriptive phenomenology. Three distinct phases in the development of informal caregiver–nurse relationship was uncovered: (1) the first phase is associated with the organization of home care in the family context, (2) the management of possibilities and challenges faced by informal caregivers in-home care phase; (3) the impact of home care on informal caregivers‘ quality of life and health phase. This study result shows that in organizing home care for the elderly are lack of cross-sectoral cooperation and teamwork between informal caregivers and community nurses. Therefore, informal caregivers must accept a new role in life as a provider of care, advocating, and supporter roles. Furthermore, as a result of daily fatigue, the informal caregivers‘ quality of life is deteriorating and their social exclusion is increasing.
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Hoffman, Geoffrey J., and Steven P. Wallace. "The Cost of Caring: Economic Vulnerability, Serious Emotional Distress, and Poor Health Behaviors Among Paid and Unpaid Family and Friend Caregivers." Research on Aging 40, no. 8 (December 4, 2017): 791–809. http://dx.doi.org/10.1177/0164027517742430.
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This study examined differences between paid and unpaid family/friend caregivers to better understand the consumer-driven caregiving workforce. We compared economic vulnerability, unhealthy behavior, and serious emotional distress for 475 paid and 10,500 unpaid family/friend informal caregivers from the 2009 California Health Interview Survey. We then estimated whether caregiver status moderated the relationship between economic vulnerability and health outcomes. Compared to unpaid family/friend caregivers, paid family/friend caregivers had a 27% greater risk ( p = .002) of economic vulnerability. Among all family/friend caregivers, the probabilities of serious emotional distress and unhealthy behaviors increased by >100% and 28% for those with the greatest compared to the least economic vulnerability, and caregiver type did not moderate these relationships. To address economic and health vulnerabilities of paid informal caregivers, policy makers might increase wages in consumer-driven programs. These changes could prove beneficial to both paid informal caregivers and their care recipients, while reducing long-term inefficiencies in consumer-driven programs.
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MacLeod, Stephanie. "The Growing Burden of Informal Caregivers During COVID-19." Innovation in Aging 5, Supplement_1 (December 1, 2021): 955. http://dx.doi.org/10.1093/geroni/igab046.3446.
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Abstract Caregiver burden has negative effects on health outcomes and quality of life. Meanwhile, safety protocols during the COVID-19 pandemic created immediate impacts on informal caregiving with increasing burden on family caregivers. Our primary purpose was to describe the impacts of the pandemic on caregiver burden among informal caregivers, and their sudden shift in roles as a result. This review describes emerging effects on various aspects of health and explores future directions to support informal caregivers. A streamlined search was conducted to fit the scope of this review, with key terms determined to identify relevant publications. Common research databases and mainstream resources were utilized. We focused on research published since March 2020 to align with the timing of the pandemic in the US. Early research suggests that the pandemic has worsened caregiver burden among informal family caregivers. Reported health impacts include greater stress, pain, depression, sleep problems, and irritability, decreased social connectedness and quality of life. Informal family caregivers face negative health outcomes and distress as a result of greater caregiver burden and intensity during the COVID-19 pandemic. Immediate solutions are needed to alleviate this growing burden and provide ongoing support. Future work should explore the potential of boosting positive resources such as resilience and purpose to ease caregiver burden.
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Malhotra, Chetna, Rahul Malhotra, Truls Østbye, David Matchar, and Angelique Chan. "Depressive symptoms among informal caregivers of older adults: insights from the Singapore Survey on Informal Caregiving." International Psychogeriatrics 24, no. 8 (March 22, 2012): 1335–46. http://dx.doi.org/10.1017/s1041610212000324.
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ABSTRACTBackground: This paper determines care recipient and caregiver characteristics and caregiving dimensions – associated with depression among caregivers of older adults, using path analysis and assesses whether the identified path model differs between spousal and adult child caregivers.Methods: Data from 1,190 dyads comprising care recipients (community-dwelling adults aged ≥75 years with at least one activity of daily living (ADL) limitation) and caregivers (family member/friend most involved in providing care/ensuring provision of care to care recipient), who were interviewed through the Singapore Survey on Informal Caregiving (2010–2011), were used. Using path analysis, we assessed the direct and indirect associations between primary stressors (care recipient's ADL and instrumental ADL status, and memory and behavior problems), caregiver health status, receipt of assistance from a foreign domestic worker/maid, amount of caregiving, negative reaction to caregiving, caregiver's self-esteem, perceived emotional support, and caregiver depressive symptoms.Results: Our analysis showed that primary stressors, receipt of assistance from a foreign domestic worker/maid, perceived emotional support, and caregiver health status were directly or indirectly associated with caregiver depressive symptoms, and this association was mediated by negative reaction to caregiving. Caregiver self-esteem mediated the relationship between perceived emotional support and negative reaction to caregiving only among adult child caregivers.Conclusions: The results provide insights into factors associated with depressive symptoms among spousal and adult child caregivers, and help identify targeted interventions for improving caregiver mood.
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Buchanan, Robert J., Dagmar Radin, and Chunfeng Huang. "Caregiver Burden Among Informal Caregivers Assisting People with Multiple Sclerosis." International Journal of MS Care 13, no. 2 (July 1, 2011): 76–83. http://dx.doi.org/10.7224/1537-2073-13.2.76.
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Multiple sclerosis (MS) burdens not only patients but also their informal or family caregivers. This study was conducted to identify characteristics of caregivers, caregiving, and MS patients receiving informal care that are associated with caregiving burden. Data were collected through a national survey of informal MS caregivers and analyzed using an ordered logistic regression model to identify factors associated with burden. Burden was found to be significantly greater among male caregivers than among female caregivers. Moreover, greater burden was associated with more frequent patient bladder dysfunction, more hours per week spent providing assistance, and greater restriction on the caregiver's ability to perform daily activities because of caregiving responsibilities. A strong association was found between the mental health status of the caregiver and burden. Health professionals should be sensitive to the impact of caregiving on the mental health of MS caregivers. The results of this study suggest that treating patient bladder dysfunction and facilitating respite care may reduce burden and improve the mental health of informal caregivers of people with MS. Future research should identify programs and services designed specifically to reduce burden experienced by male caregivers.
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Hu, Mengyao, Allison Squires, and Bei Wu. "Caregiver Support for Asian American Alzheimer’s Disease and Related Dementias Caregivers: A Conceptual Synthesis." Innovation in Aging 5, Supplement_1 (December 1, 2021): 66. http://dx.doi.org/10.1093/geroni/igab046.253.
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Abstract Informal caregiver support has been defined as different types of interventions. However, it has not been well explained in the social context and not well discussed as an integrative concept for dementia caregivers who are Asian Americans. Therefore, the aim of this study was to conduct a dimensional analysis--a type of evidence synthesis--to explore caregiver support in the context of Asian American dementia caregivers. A synthesis of 40 articles produced four interrelated dimensions of caregiver support: Individual (language, information, psychological issue, and culture); Family (family member support, availability of extended family, and decision making); Community (bilingual and bicultural help, and religion and spiritual source); and Professional healthcare system (expectations from healthcare professionals and caregivers for caregiver interventions, communication concordance, initiative in seeking help, and trust). The findings provide guidance for future studies on this population in promoting caregiver’s health and developing caregiver interventions.
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Campione, Joanne R., and Katarzyna Zebrak. "FACTORS ASSOCIATED WITH UNMET NEED AMONG FAMILY CAREGIVERS." Innovation in Aging 3, Supplement_1 (November 2019): S386. http://dx.doi.org/10.1093/geroni/igz038.1417.
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Abstract This study investigates the relationship between caregiver demographics, caregiving intensity, caregiver support use, and aspects of the caregiving situation with perceived unmet need. The data source was survey response data from 1,558 informal caregivers caring for older adults (age 60+) or caring for any adult with Alzheimer’s disease or related dementia (ADRD). Participants were randomly recruited through U.S. Area Agencies on Aging client lists of any service and interviewed in December 2016. Caregivers were asked, “Are you receiving all the help you need?” Twenty-two percent (n=345) said “Definitely No” and were classified as having unmet need. We placed caregivers in tertiles based on their Zarit burden score; unmet need was 14% among low burden, 20% among medium, and 34% among high. The mean age of the care recipient (CR) was 81 years. Caregivers were 70% non-Hispanic White, 52% caring for CR with ADRD, and 43% spouse of CR. A multivariable logistic regression found two predictive factors (odds ratio p-value < 0.01) that increased the likelihood of reporting unmet need: daily intensity of caregiving and not feeling appreciated by CR. Usage of caregiver education, counseling or support group services in the past 6 months decreased the likelihood of reporting unmet need. In the high burden subgroup, Black caregivers were more likely to report unmet need than White caregivers. Understanding the relationship between caregiver demographics, self-reported burden level, service use, and the caregiver’s need for more help can assist caregiver support programs in assessing, measuring, and addressing the ongoing needs of caregivers.
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Strang, Vicki R., and Priscilla M. Koop. "Factors which Influence Coping: Home-based Family Caregiving of Persons with Advanced Cancer." Journal of Palliative Care 19, no. 2 (June 2003): 107–14. http://dx.doi.org/10.1177/082585970301900206.
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The findings from a qualitative study of bow caregivers coped while they cared for a dying family member at home are presented. Fifteen family caregivers were interviewed twice following The death of their family member. Although it was not one of the original objectives of the research, coping emerged as a category needing further analysis. There were factors that either facilitated or interfered with caregiver coping. Those factors that facilitated their coping included characteristics of the caregivers themselves; contributions made by the dying person; and supportive networks, both formal and informal, available to the caregivers. Interfering factors related to caregiver experiences with informal and formal systems. From the more distant Perspective of post-death reflections, the caregivers Provided insight into how their coping was grounded in the meaning associated with their experiences.
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Hosseini, Shera, Lorraine Carter, Donna Thomson, and Michelle Howard. "EVALUATING THE EFFECTIVENESS OF AN ONLINE TRAINING COURSE FOR MEETING NEEDS ASSOCIATED WITH CAREGIVING BURDEN." Innovation in Aging 6, Supplement_1 (November 1, 2022): 438–39. http://dx.doi.org/10.1093/geroni/igac059.1720.
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Abstract Informal caregivers make up a critical part of long-term support in the communities due to their important role in caring for older adults living at home. Modern-day caregivers are facing greater responsibility and burden for managing their care recipients. The present study aimed to explore the effect of a caregiving training program in alleviating caregiver burden. This program included four standalone online modules each with specific foci. Completion of activities across the modules allowed for the creation of a Caregiver Action Plan which offered a personal and practical resource to the informal caregivers. This evaluation study was qualitative and a used thematic analysis method of data analysis. Data stemmed from semi-structured interviews with the caregivers and their reflections on the program’s discussion board. Most caregivers provided care for persons with dementia. Interviews with the family caregivers were conducted, transcribed, and thematically analyzed. Themes were identified through constant comparison and in an iterative process. The family caregivers demonstrated consensus on the efficacy of the program in raising competence and confidence and contributing to ameliorating burden levels. Important themes were identified in association with areas for which the caregivers needed support: Early dementia education, planning for future care, learning about navigating healthcare systems, peer support, enhancing self-care, and coping with emotional burden and self-blame. The findings will be informative in shaping the program based on the caregiver’s identified needs through addressing those areas that they would need support. These findings may offer recommendations to other programs designed to support the family caregivers.
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Day, Jennifer R., and Ruth A. Anderson. "Compassion Fatigue: An Application of the Concept to Informal Caregivers of Family Members with Dementia." Nursing Research and Practice 2011 (2011): 1–10. http://dx.doi.org/10.1155/2011/408024.
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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.
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Campione, Joanne R., and Katarzyna A. Zebrak. "Predictors of Unmet Need Among Informal Caregivers." Journals of Gerontology: Series B 75, no. 10 (January 7, 2020): 2181–92. http://dx.doi.org/10.1093/geronb/gbz165.
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Abstract Objectives This study investigates the relationship of caregiver demographics, caregiving intensity, caregiver support use, and aspects of the caregiving situation to a self-reported measure of unmet need among U.S. informal caregivers of older adults living at home with various conditions. Methods Response data from 1,558 caregiver participants interviewed by telephone during the December 2016 baseline period of the Outcome Evaluation of the National Family Caregiver Support Program were used. Caregivers who responded “Definitely No” to the question “Are you receiving all the help you need?” were classified as reporting unmet need. Logistic regression was used to find significant factors associated with unmet need among the full sample and among caregivers tiered by three levels of burden. Results Unmet need was reported by 22% of the caregivers. In a fully adjusted model, unmet need was predicted by higher levels of caregiving intensity, non-White race of the caregiver, and the caregiver not feeling appreciated by their care recipient. Other predictors associated with unmet need were no use of caregiver educational services, fewer respite hours, not living in a rural area, and caregiver having an education past high school. Discussion Caregivers who do not feel appreciated by their care recipient and non-White caregivers should be identified as potential targets for intervention to address unmet need, especially if they are also reporting higher levels of caregiver burden. Understanding the factors associated with self-reported unmet need can assist caregiver support programs in measuring and addressing the needs of informal caregivers to support their continued caregiving.
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Zenker, Rachel, Connor Pardell, Andrea Gilmore-Bykovskyi, Amy J. H. Kind, and Nicole Werner. "Exploring Workload among Informal Caregivers of Persons with Dementia." Proceedings of the Human Factors and Ergonomics Society Annual Meeting 61, no. 1 (September 2017): 1297. http://dx.doi.org/10.1177/1541931213601805.
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Background: An estimated 5.3 million Americans are currently living with Alzheimer’s Disease or related dementias (Association 2015). Healthcare delivery for persons with Alzheimer’s Disease or related dementias (PwD), involves both the formal (e.g., physicians, social workers) and informal (e.g., family members, neighbors) work of healthcare. Informal caregiving for PwD totals approximately 18 billion hours of work per year and costs up to 217.7 billion dollars per year in caregiving costs, lost productivity and medical and institutional care (Association 2015). Informal caregivers must execute complex tasks in a dynamic environment often without the necessary information, resources, and training (Allegri, Sarasola et al. 2006, Gitlin, Kales et al. 2012). In addition, informal caregiving requires a physical, emotional, psychological, financial and temporal commitment from the informal caregiver. The confluence of these circumstances has the potential to influence the demands experienced by informal caregivers and the capacity to meet those demands. As informal caregivers increasingly take on healthcare tasks that were previously performed by trained professionals, it is important to understand how the workload experienced by informal caregivers and how it affects caregiving performance. Objective: To explore workload among informal caregivers of PwD to identify the influencers of capacity and demand and understand the interaction between capacity, demand, and caregiver burden. Method: We conducted in-depth semi-structured interviews (N=9) with informal caregivers of PwD to explore the workload among informal caregivers using qualitative thematic analysis. The interview questions related to the understanding of: 1) work performed by informal caregivers 2) strategies, tools, and resources used by informal caregivers 3) unmet needs related to caregiving work and 4) the environment in which the caregiving occurred. Results: We found three overarching themes related to caregiver workload: (1) informal caregiving demands surpass the capacity of any individual informal caregiver; (2) informal caregivers experienced dynamic workload that increased over time (i.e., as the disease progressed) forcing informal caregivers to seek assistance from other formal and informal caregiving resources; and (3) training, information, and resource scarcity is associated with informal caregiver work overload. Conclusions: Our results suggest that informal caregivers experience dynamic workload that increases over time, and that cannot be sustained by one person. Although informal caregivers were able to develop strategies to support workload, due to the progressive nature of the disease, specific strategies were not typically useful over time.
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Son, Chong-Hwan. "Physical and Mental Health Effects of Characteristics of Caregivers and the Caregiving Situation." Archives of Business Research 9, no. 7 (July 30, 2021): 116–39. http://dx.doi.org/10.14738/abr.97.10555.
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The present study investigated the effects of characteristics of caregivers and the caregiving situation on family caregivers’ physical/mental health, using the multiple regression analysis with the time-series and cross-sectional data from the 2015-2018 Behavioral Risk Factor Surveillance System (BRFSS). The regression results indicated that the caregiving role could increase the risk of developing physical/mental health problems. Importantly, this study revealed that the characteristics of caregivers and care recipients were significantly associated with caregivers’ physical/mental health outcomes. Especially the results showed that the caregiver support program was the most significant factor linked to caregivers’ physical/mental health. It pointed to the importance of caregiver education and support programs for family caregivers to cope with the stress from providing care or daily assistance. The results also pinpointed which area of support services for informal caregivers would be a priority to enhance. Thus, the public health policymakers should re-evaluate the current long-term care program to establish a more effective caregiving structure, especially caregiver education and support programs for family caregivers, to improve the informal caregivers’ quality of life.
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Rayan-Gharra, Nosaiba, Nurit Gur-Yaish, and Ksenya Shulyaev. "Minority status and readmissions: a moderated mediation model of caregivers’ health literacy." Innovation in Aging 4, Supplement_1 (December 1, 2020): 917. http://dx.doi.org/10.1093/geroni/igaa057.3369.
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Abstract Family caregivers help patients to understand informa¬tion during clinical encounters. Less is known about factors that may affect family caregiver’s Ensuring and Explaining Medical Care (EEMC) during hospitalization and its impact on improved health outcomes. This study examined whether EEMC during hospitalization mediated the association between minority status of patients and 30-day-readmissions, and whether levels of Health Literacy (HL) of caregivers moderated this mediated association. A prospective cohort study of 517 internal medicine patients, Hebrew (general population, coded as 0) and Russian, or Arabic native speakers (minority status, coded as 1), at a tertiary medical center in central Israel, who were accompanied by an informal caregiver. EEMC and HL were patients’ self-reported. 30-day-readmissions were retrieved from the healthcare organization. Logistic regression indicated that minority status was not associated with 30-day readmission when the mediator ICEEMC was not included (B=0.98; p>0.05). However, moderated mediation analysis indicated significant direct (B=-1.08; p=0.003) and indirect effect of minority status on readmission through high ICEEMC during hospitalization among patients who had informal caregivers with high HL level (Mediated effect (ME)=−0.62; CI= -1.07 to -0.29) but not among ones with low HL level (ME= 0.37; CI=-0.24 to 1.06). These findings suggest that caregivers’ high HL may be an essential factor in improving EEMC among minorities. Identifying informal caregivers with high HL level at time of admission to the hospital, and encouraging their involvement during patients’ hospital stay, might be a useful strategy to improve transitions and reducing 30-day readmission, especially among minority patients.
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Kent, Erin E., Kristin Litzelman, and Julia Howe Rowland. "Correlates of and interrelationships among social stressors, relationship quality, and family functioning among informal cancer caregivers." Journal of Clinical Oncology 33, no. 29_suppl (October 10, 2015): 230. http://dx.doi.org/10.1200/jco.2015.33.29_suppl.230.
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230 Background: Informal/family caregivers play a critical role in supporting cancer patients and are often an important part of the palliative care team. To better understand how informal caregivers are influenced by their role and inform future interventions, this study sought to evaluate the distribution and correlates of social and family factors among caregivers of cancer patients. Methods: This cross-sectional study used data from the Cancer Care Outcomes Research & Surveillance Consortium (CanCORS). Lung and colorectal cancer patients nominated an informal caregiver to participate in a caregiving survey. Caregivers reported their sociodemographic and caregiving characteristics, social stress, relationship quality with the patient, and family functioning. Descriptive statistics were used to assess the distribution of caregivers’ social factors. Multivariable linear regressions were used to examine the independent correlates of each social factor. Results: Most caregivers reported low-to-moderate levels of social stress and good relationship quality and family functioning. In multivariable analyses older age was associated with lower social stress and better family functioning, but worse relationship quality, with effect sizes (Cohen’s D) up to 0.40 (p < 0.05). Caring for a female patient was associated with lower social stress and better relationship quality, but worse family functioning (effect sizes up to 0.16, p < 0.05). Few caregiving characteristics were associated with social stress, while several were significant independent correlates of relationship quality. Finally, social factors were important independent correlates of one another. Conclusions: The results highlight the importance of personal and caregiving-related characteristics and the broader family context to social factors. As social factors may play an important role in the health, quality of life, and caregiving efficacy of informal caregivers, future work is needed to better understand these pathways and assess whether interventions targeting social factors can improve caregiver well-being, thereby potentially improving patient-centered palliative care.
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Baik, Sol, Rachel Coleman, and Jennifer Crittenden. "FACTORS ASSOCIATED WITH VOLUNTEERING AMONG FAMILY CAREGIVERS OF OLDER ADULTS." Innovation in Aging 6, Supplement_1 (November 1, 2022): 873. http://dx.doi.org/10.1093/geroni/igac059.3119.
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Abstract Family caregiving has been linked to an increased risk of poor mental health, poor physical health, and higher rates of perceived social isolation among caregivers. Despite the connection between caregiving and negative outcomes, or perhaps because of this connection, caregivers seek out and enjoy other life roles and activities including formal volunteerism. To explore the connection between informal caregiving and volunteering and establish the representative prevalence of formal volunteering among caregivers, descriptive and multivariate logistic regression analyses were carried out with data from 1,745 caregivers in the National Study of Caregiving (NSOC) (2017). Utilizing social capital theory four models were constructed with salient demographic characteristics associated with volunteering (model 1), caregiving context (model 2), caregiver physical and mental health (model 3), along with participation in informal and formal social networks (model 4). About a quarter of the sample participated in volunteering (26%). The average age was 60.5 years (SD = 14.3) and more than half consisted of female caregivers (67.11%). Non-Hispanic Whites (62.9%) were the majority of the sample, followed by non-Hispanic Blacks (28%), Hispanic (6.5%), and caregivers in other racial/ethic groups (2.6%). Gender, educational achievement, caregiving for a spouse, coresiding with care recipient, caregiving for multiple care recipients, quality of relationship with care recipient, caregiver psychological well-being, having emotional/physical support, attending religious services, and group activity participation were all significant indicators for caregiver volunteerism. Findings support the importance of both human and social capital in volunteering among caregivers.
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Raj, Minakshi, Jodyn Platt, Tom Fitzgerald, Denise Anthony, and Shoou-Yih Daniel Lee. "IDENTITY AND RESPONSIBILITY: WHAT IT MEANS TO BE A CAREGIVER AND ITS IMPLICATIONS FOR POLICY AND HEALTH CARE." Innovation in Aging 3, Supplement_1 (November 2019): S137. http://dx.doi.org/10.1093/geroni/igz038.497.
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Abstract Improving health care and quality of life for older adults in the U.S. requires increased attention to the informal caregivers supporting aging relatives. Studies estimate that over 40 million unpaid caregivers provide more than $400 billion of unpaid care; however, there is little research examining the scope and variety of support caregivers provide. Less research has examined how caregivers conceptualize their experience beyond “caregiver burden”. A more comprehensive understanding of the types of support caregivers provide and caregiver perceptions of their role and purpose are critical to enhancing policies, e.g., the Family and Medical Leave Act, to be more responsive to caregiver needs. This study seeks to (a) identify the ways informal caregivers provide support and (b) describe what it means to be a caregiver from the perspective of informal caregivers. We conducted four focus groups with informal caregivers (relatives or partners) in Southeastern Michigan (n=18) and conducted qualitative thematic analyses. Support that caregivers provide ranges from financial planning to medical decision-making to social engagement. While caregivers face frustration and isolation consistent with “caregiver burden,” they also recognize positive attributes of being a caregiver such as overcoming adversity and helping elderly relatives maintain dignity. These attributes contribute to their identity of what it means to be a caregiver and perceived capacity to improve their relative’s health. Our findings suggest that we are underestimating the scope of work involved in care-giving and that a wider range of activities should be considered when developing workplace policies and resources to promote caregiver wellness.
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Sousa, Luís, Laurência Gemito, Rogério Ferreira, Lara Pinho, César Fonseca, and Manuel Lopes. "Programs Addressed to Family Caregivers/Informal Caregivers Needs: Systematic Review Protocol." Journal of Personalized Medicine 12, no. 2 (January 21, 2022): 145. http://dx.doi.org/10.3390/jpm12020145.
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(1) Background: considering the growing increase in informal caregivers or family caregivers, it is critical to identify the unmet care needs of informal caregivers to improve their experiences, health, and well-being, contributing to the achievement of care needs of the elderly or people with adult dependency and promotion of successful transitions from health services to the community/home. (2) Objective: to identify the current state of knowledge about programs addressed to family caregivers/informal caregivers needs. (3) Methods: a systematic review will be undertaken with resource to databases from EBSCOhost Research Platform, Scopus, Web of Science, The Virtual Health Library (VHL). Studies published after January 2011 in English, Spanish, French, Italian and Portuguese will be considered. This review will consider all studies that report on any intervention program targeting family caregivers/informal caregivers who need to improve their experiences, health, and well-being, contributing to the meeting of their needs or those who have dementia and cognitive impairment, mental disorders, impairments in activities of daily living, frailty and/or who need health care and/or promoting successful transitions of community. (4) Discussion: The results of this review could be used to develop an intervention model to meet the needs of the family caregivers/informal caregivers. Furthermore, these findings will help to guide the construction of health policies regarding family caregivers/informal caregivers, as well their needs.
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Rajović, Tatjana, and Nataša Milić. "Mental health of informal caregivers." Medicinski podmladak 73, no. 3 (2022): 8–11. http://dx.doi.org/10.5937/mp73-37522.
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The aging society is facing an important public health problem related to provision of care to older and dependent people. The care provided on a daily basis includes a range of different social and health services, as well as the provision of emotional support to people who are not capable to function independently. Activities important for day by day functioning, such as bathing, dressing, feeding, shopping and health monitoring are only part of the responsibilities and obligations that the "invisible workforce", i.e. informal caregivers, must provide. Even though, regardless of the heavy price informal caregivers often pay with their economic and health status, they still remain a blind spot in public policies. An informal caregiver provides ongoing care and assistance, without receiving payment, to family members and friends who need support due to physical, cognitive or mental problems. Depression is one of the most common problems experienced by informal caregivers and it is estimated that a large number, in the range of 40% to about 70% of all informal caregivers have depression symptoms. The COVID-19 pandemic has certainly left its mark on physical health, however, as the pandemic moves forward, it has began to show an ever increasing impact on the mental health of people around the world, where informal caregivers fall into a particularly vulnerable category. Particularly those informal caregivers who provide long-term help to a member of the family, became of an increased risk of emotional and physical exhaustion due to the burden of care, reduced services, as well as the relocation to consulting by telephone and the digital sphere. While some some of them managed to cope with stress and became resilient, others did not and the increasing psychological pressure led to the development of depression symptoms.
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Canell, Anastasia, and Grace I. L. Caskie. "CONTEXTUAL FACTORS RELATED TO CAREGIVER IDENTITY DISCREPANCY IN EMERGING ADULT CAREGIVERS." Innovation in Aging 6, Supplement_1 (November 1, 2022): 559. http://dx.doi.org/10.1093/geroni/igac059.2112.
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Abstract Approximately 12-18% of unpaid family caregivers to older adults in the U.S. are 18-25 years old, yet minimal research focuses on this subgroup of caregivers (Levine, 2005). Because caregiver identity theory postulates that the extent to which informal caregivers integrate their caregiving roles and duties into their identity may relate to caregiver distress (Montgomery & Kosloski, 2012), contextual factors related to higher reported caregiver identity discrepancy should be assessed. In a sample of 135 emerging adult informal caregivers, the current study compared caregiver identity discrepancy across two factors: level of caregiving responsibility and caregiver gender. Caregiving responsibility had four groups: (1) primary with minimal help (n=54), primary but receiving some help (n=51), secondary (n=18), or shared (n=12). Caregiver identity discrepancy was measured using the five subscales of the Family Caregiver Identity Scale (Eifert et al., 2019). Caregiver identity discrepancy differed significantly by caregiving responsibility (p<.001) and gender (p=.046). Emerging adult caregivers identifying as women reported statistically more caregiver identity discrepancy in family obligation (p=.003) and master identity (p=.036) domains than men. Caregiving responsibility showed statistically significant differences in role engulfment (p<.001), loss of shared identity (p<.001), family obligation (p=.013), and master identity (p=.010) domains of identity discrepancy. Emerging adult caregivers identifying as the primary caregiver with minimal help from others reported significantly more identity discrepancy than all other groups across subscales. These results demonstrate that young caregivers who have little support in task responsibilities and identify as a woman may be at particular risk for experiencing caregiver identity discrepancy.
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Greaney, Mary L., Zachary J. Kunicki, Meghan M. Drohan, Caitlin C. Nash, and Steven A. Cohen. "Sleep Quality Among Informal Caregivers During the COVID-19 Pandemic: A Cross-Sectional Study." Gerontology and Geriatric Medicine 8 (January 6, 2022): 233372142110573. http://dx.doi.org/10.1177/23337214211057387.
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Sleep is an integral component of health. The impact of the COVID-19 pandemic on sleep quality among informal caregivers, individuals who provide unpaid care or assistance to family members or friends, assisting older adults is not well understood. Therefore, informal caregivers in the United States providing care for individuals aged 50+ were recruited via Amazon’s Mechanical Turk, an online platform for enrolling study participants into social and behavioral science research, to complete an online survey. The sample of informal caregivers ( n = 835) was 69% male and 55% non-Hispanic. Multivariable linear regression models were constructed to assess the associations between sleep disturbance scores (SDS) and sleep-related impairment scores (SIS) and caregiving-related measures (hours caregiving/week, length of time spent caregiving, and caregiver burden), demographics, and region of the United States. The analysis determined that Black (β = 2.6, 95% CI [−4.3, −0.9]) and Asian informal caregivers (β = −1.8, 95% CI [−3.4, −0.3]) had lower mean SIS than White caregivers, the referent group. In addition, increasing caregiver burden was associated with increased SDS (β = 0.8, 95% CI [0.6, 1.0]) and SIS (β = 1.3, 95% CI [0.7, 1.6]). In conclusion, higher caregiver burden was associated with higher SIS and SDS, suggesting that informal caregivers' sleep should be assessed, and when needed interventions should be offered.
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Chattopadhyay, Jacqueline. "Political Impediments to Aging in Place: The Example of Informal Caregiving Policy." Innovation in Aging 4, Supplement_1 (December 1, 2020): 680–81. http://dx.doi.org/10.1093/geroni/igaa057.2369.
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Abstract Most Americans prefer to “age-in-place” as long as possible, but to do so often need overlapping resources—one of which is help from “formal” or “informal” caregivers (family and friends). Family and friends often want to provide care for as long as safely possible. However, informal caregiving can pose financial and physical risks to the caregiver that—as many scholars have noted—public policy in the U.S. does relatively little to mitigate. This policy shortfall also hurts care recipients since the risks that informal caregivers face can prematurely curtail their ability to provide care. Why does policy in the U.S. not better support informal caregivers? By synthesizing family caregiving research and political science research that has addressed long-term care, this paper surveys nine factors in the political system that may help answer this question. Four emanate from policy history. Three concern the mass public. Two vary at the policy level.
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Valcárcel-Nazco, Cristina, Yolanda Ramallo-Fariña, Renata Linertová, Juan Manuel Ramos-Goñi, Lidia García-Pérez, and Pedro Serrano-Aguilar. "Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Patients with Rare Diseases in Selected European Countries." International Journal of Environmental Research and Public Health 19, no. 13 (July 5, 2022): 8208. http://dx.doi.org/10.3390/ijerph19138208.
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Most of rare disease (RD) patients are assisted in their homes by their family as informal caregivers, causing a substantial burden among family members devoted to care. The role of informal caregivers has been associated with increased levels of stress, poor physical/mental health and impaired HRQOL. The present study assessed the impact on HRQOL and perceived burden of long-term informal caregiving, as well as the inter-relationships of individuals affected by different RD in six European countries, taking advantage of the data provided by the BURQOL-RD project (France, Germany, Italy, Spain, Sweden and UK). Correlation analysis was used to explore the relation between caregiver HRQOL and caregiver burden (Zarit Burden Interview). Multinomial logistic regression models were used to explore the role of explanatory variables on each domain of caregivers HRQOL measured by EQ-5D. Caregivers’ HRQOL is inversely correlated with burden of caring. Mobility dimension of EQ-5D was significantly associated with patients age, time devoted to care by secondary caregivers, patient gender and patient utility index. Patients’ age, burden scores and patient utility index significantly predict the capacity of caregivers to perform activities of daily living. Employed caregivers are less likely of reporting ‘slight problems’ in pain/discomfort dimensions than unemployed caregivers. The EQ-5D instrument is sensitive to measure differences in HRQOL between caregivers with different levels of burden of care.
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Demiris, George, and Karen Hirschman. "Caregiver-Centered Communication: Engaging Family Caregivers." Innovation in Aging 4, Supplement_1 (December 1, 2020): 570–71. http://dx.doi.org/10.1093/geroni/igaa057.1890.
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Abstract Older adults are often relying on a family member or other informal caregiver (friend or other) to jointly navigate the health care system and cope with the ramifications of serious illness; thus, the patient-caregiver dyad becomes the unit of care. The caregiving role becomes crucial in cases where patients are facing a condition that limits their cognitive and functional abilities and caregivers are called to act as proxy decision makers for significant treatment and symptom management decisions. Caregivers often report that they feel isolated and overwhelmed, and in some cases experience significant barriers in communicating with health care providers. It is important that clinicians communicate in a way that acknowledges and addresses caregivers’ preferences, needs and perspectives. Caregiver centered communication can facilitate a more effective adaptation throughout the illness course with better adherence to recommended treatment plans and greater satisfaction with care for both patients and families, as well as a more comprehensive response to their psychosocial needs. While health care organizations often aim to increase caregiver engagement and involvement in care processes, there is a lack of tools or strategies not only to more actively engage caregivers but also to assess how ongoing approaches perform in terms of facilitating meaningful and inclusive communication. This symposium will review existing tools and a new instrument to measure caregiver centered communication, challenges and opportunities in measuring the quality of communication with caregivers and highlight empirical data of communication quality in various health care settings including home care and hospice.
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Weinland, Jo Ann. "The Lived Experience of Informal African American Male Caregivers." American Journal of Men's Health 3, no. 1 (November 7, 2007): 16–24. http://dx.doi.org/10.1177/1557988307305916.
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Informal caregivers play a major role in providing care to loved ones within the home and demands for dependent care are likely to increase. Informal caregivers are likely to continue to be responsible for the majority of care for loved ones living well into late stages of life. This article describes the lived experience of African American men providing care to a relative within the home and explores their definition of caregiver distress. The phenomenological study was conducted using face-to-face interviews with 10 Christian African American men. Demographic data about the caregiver and the care recipient were collected. Common themes included: commitment, support (family support and formal health-related support), spirituality, and caregiver burden (stress, time strain and financial strain). Implications include the need for health care providers to expand their knowledge related to the diversity of caregivers and to use culturally relevant comprehensive assessments of caregivers and recipients, discharge planning tools, and community resources.
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Hvalič-Touzery, Simona, Kaja Smole-Orehek, and Vesna Dolničar. "Informal Caregivers’ Perceptions of Self-Efficacy and Subjective Well-Being when Using Telecare in the Home Environment: A Qualitative Study." Geriatrics 7, no. 5 (August 23, 2022): 86. http://dx.doi.org/10.3390/geriatrics7050086.
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Background: Self-efficacy (SE) can be used to explain informal caregivers’ ability to cope with the challenges of caregiving. Although SE impacts informal caregivers’ subjective well-being, its effects have not yet been studied from the perspective of telecare use. This study aimed to explore informal caregivers’ perceptions of and associations between SE and subjective well-being when using different telecare functionalities. Methods: A four-month intervention study using a qualitative research design was conducted. In-depth interviews were conducted with 22 informal caregivers of older people who tested one of two telecare devices in their homes. Results: Five task-specific dimensions of caregiver SE were identified that were shaped by telecare use: controlling upsetting thoughts about the care recipient, managing protective vigilance, obtaining support in emergency situations, managing caregiving, work, family life, and responding in a timely manner to changes in the care recipient’s daily routine. These SE dimensions were associated with caregivers’ subjective well-being. Conclusions: Telecare use may contribute to greater caregiver SE and higher subjective well-being. Therefore, future studies should pay more attention to these potential benefits of telecare. Additional dimensions of caregiver SE should be included in existing caregiver SE scales when examining caregiver SE related to telecare use.
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Tilinger, Ana, and Ana Štambuk. "Problemi neformalnih (obiteljskih) njegovatelja u skrbi za osobe s demencijom – kvalitativni pristup." Hrvatska revija za rehabilitacijska istraživanja 54, no. 2 (January 14, 2019): 59–70. http://dx.doi.org/10.31299/hrri.54.2.6.
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Alzheimer’s disease, as the most common form of dementia, is a progressive, incurable condition that can lead to total dependence on others. The whole family, especially the family member who serves as caregiver of a patient, faces many problems and is in a very difficult situation. By taking over the demanding role of care for the family member, the carer often becomes a “victim of the disease” who needs to find ways to shoulder everything that the disease brings. Studies outside Croatia show that some interventions assist caregivers in their role, such as knowledge of the disease process, knowledge of nutrition and nursing of the affected person, knowledge of caregiver-related stress management, and instructions on how to address the problems associated with the patient’s changed behaviour. In order to gain insight into the problems encountered by informal carers in the care of a member of the family with dementia in Croatia, we examined their experiences. The method used for this qualitative research was a semi-structured interview. The results of this research suggest that informal caregivers are faced with demanding tasks of caring, difficulties in communication with the sick, system-level problems, social isolation and disrupted psychophysical functioning. The work emphasises the importance of educating informal caregivers about different aspects of care with the aim of facilitating a caring role, expertise in working with patients, and informing and sensitising the local community and society about the needs of informal caregivers.
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Todorovic, Natasa, Milutin Vracevic, Nina Rajovic, Vedrana Pavlovic, Petar Madzarevic, Jelena Cumic, Tanja Mostic, et al. "Quality of Life of Informal Caregivers behind the Scene of the COVID-19 Epidemic in Serbia." Medicina 56, no. 12 (November 26, 2020): 647. http://dx.doi.org/10.3390/medicina56120647.
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Background and objectives: The COVID-19 pandemic has had an unprecedented reliance on informal caregivers as one of the pillars of healthcare systems. The aim of this study was to assess the quality of life of informal caregivers during the COVID-19 epidemic in Serbia. Materials and Methods: A cross-sectional study was conducted among informal caregivers during the COVID-19 epidemic in Serbia. Physical and mental quality of life was measured by the 36-Item Short-Form Health Survey. Additional data included sociodemographic characteristics, caregiver and care recipient characteristics, and COVID-19 related concerns. The qualitative component was performed using focus groups and individual in-depth interviews. Results: Out of 112 informal caregivers enrolled, most were female (80%), and the average age was 51.1 ± 12.3 years. The majority was delivering care to one person, who was a family member, on a daily basis (86.4%, 92%, and 91.1%, respectively). In multiple regression models, significant predictors of caregivers’ physical health were delivering care to a family member and a higher level of care complexity, while significant predictors of caregivers’ mental health were a higher level of care complexity and increased concerns about self-health and the health of the person being cared for due to the COVID-19 epidemic. Conclusions: Informal caregivers are experiencing negative physical and mental health outcomes during the COVID-19 epidemic in Serbia.
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Ponnala, Siddarth, Dustin T. Weiler, Andrea Gilmore-Bykovskiy, Laura Block, Amy J. Kind, and Nicole E. Werner. "Towards an Understanding of Informal Care Networks of Persons with Dementia: Perceptions of Primary Caregivers." Proceedings of the Human Factors and Ergonomics Society Annual Meeting 62, no. 1 (September 2018): 561–62. http://dx.doi.org/10.1177/1541931218621128.
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Introduction Although an understanding of the patient work system has been increasing in the field of Ergonomics and Human Factors, the role of informal caregivers (unpaid, nonprofessional caregivers) within the patient work system remains largely unexplored (Holden, Schubert, & Mickelson, 2015; Holden, Valdez, Schubert, Thompson, & Hundt, 2017). Informal caregivers include the family members and friends of persons with dementia (PwD), or anyone else who is unpaid, and a non-professional caregiver for a PWD(Reinhard, Given, Petlick, & Bemis, 2008). Nevertheless, informal caregivers are often unsupported and lack guidance with caregiving activities(Alrashed, 2017; Bossen, Christensen, Grönvall, & Vestergaard, 2013). This study represents a first step to define the work of informal caregivers, identify variations in caregiver involvement across multiple caregivers, and explore the perceptions of the primary caregiver (PC) regarding the care network. Understanding the specific roles and work associated with providing care can help us to support and prepare future and current informal caregivers on how to overcome barriers in the work system and increase quality of care for the PwD. Methods Semi-structured interviews were used to encourage 20 self- identified primary caregivers to discuss their daily experiences in providing care to a PwD. Interview questions related to: 1) the daily activities of informal caregivers; 2) the strategies, tools, and resources used and developed by informal caregivers to manage caregiving responsibilities; 3) unmet needs in providing care; and 4) the context in which informal caregiving occurred. We used a thematic analysis with the goal of understanding informal caregiving roles in the PwD work system. Guided by the research questions, structural coding of passages in the transcripts was performed by two members of the research team. The team also mapped the caregiver networks to understand the differences in each role network level. Results The results revealed that the work of informal caregivers of PwD consists of a wide range of tasks that can be physically challenging as well as mentally and emotionally burdensome. Our analysis also revealed distinct variations in care networks and primary caregiver perceptions of other themes: 1) informal caregivers operate at three role levels of care within the care network; 2) PwD care networks vary greatly in size and relationships, and 3) PCs act as gatekeepers to the care network. Caregivers were mapped across three levels of the PwD's care network based on frequency of interactions with the PC and PwD, communication patterns, and contributions to the care activities. Care networks varied between 2 and 11 caregivers who contributed to the care activities in some capacity. The relationships between caregivers and PwD varied greatly, including spouses, children, siblings, neighbors, and volunteers. Further, we found that there is usually one PC for every PwD. The PC acts as a gatekeeper to the care network by regulating interactions between other caregivers and the PwD. The PC also had different expectations for each caregiver based on their relationship to the PwD. Discussion This research presents preliminary findings on the roles of informal caregivers of persons with dementia. These results warrant further investigation into role delineation, primary, secondary, and tertiary caregiver expectations, and the full conceptualization of caregiver work. A formal network analysis that maps caregiver activities to specific roles may be beneficial to understand all the contributions to the care network. These findings are valuable to inform patient work system design in informal care settings. Currently, there is a lack of guidance on how informal caregivers should coordinate care for patients with chronic illness in their homes, and a lack of support for these informal care activities. Defining caregiver work and understanding caregiver perceptions of work can pave a path towards designing better patient work systems to connect the network more efficiently, while improving care quality in informal settings.
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Evans, Rachael, Michael Catapano, Dina Brooks, Roger Goldstein, and Monica Avendano. "Family Caregiver Perspectives on Caring for Ventilator-Assisted Individuals at Home." Canadian Respiratory Journal 19, no. 6 (2012): 373–79. http://dx.doi.org/10.1155/2012/452898.
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BACKGROUND: The trend of patients who are invasively ventilated to prefer home care is one that benefits both the patient and the health care system. However, this assumes a role for patients’ family members to become informal caregivers.OBJECTIVE: To explore the impact of caring for a ventilator-assisted individual on informal caregivers.METHODS: A descriptive design with semistructured caregiver interviews and the Caregiver Burden Inventory were used. Participants were informal caregivers of a family member with a progressive neuromuscular disease on invasive ventilation for at least six months. Transcript coding was performed and regularly reviewed, and recruitment continued until data saturation. Qualitative analysis was based on ‘thematic analysis’.RESULTS: A total of 21 caregivers were interviewed. Five themes developed: a sense of duty; restriction of day-to-day life; physical and emotional burden; training and education; and the need for more paid support. Caregivers described a sense of duty to take care of loved ones, but suffered a significant restriction of their own time with a negative impact on their physical and mental health. The initial transfer home was highlighted as the most stressful part of the process. The Caregiver Burden Inventory scores supported a high level of burden: median 49 (interquartile range 39.5 to 53.0) of a maximum 96.CONCLUSION: Homecare for ventilator-assisted individuals with progressive neuromuscular disease causes significant burden to informal care-givers. Approaches to lessen this burden, such as increased paid care, improved professional support and respite care, may enable home ventilation to be a more sustainable modality of care.
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Aung, Thin Nyein Nyein, Myo Nyein Aung, Saiyud Moolphate, Yuka Koyanagi, Siripen Supakankunti, and Motoyuki Yuasa. "Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand." International Journal of Environmental Research and Public Health 18, no. 11 (May 30, 2021): 5873. http://dx.doi.org/10.3390/ijerph18115873.
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Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.
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Lee, Charlotte T., Clarelle L. Gonsalves, Jenny Gao-Kang, Brittney Jayne McKay, Wyatt G. Pickrell, Tara Sabzvari, Sandra Yalda, and Ruth F. Barker. "Characteristics of caregiving: A prospective, observational study of lung cancer patients and their informal caregivers." Journal of Clinical Oncology 37, no. 31_suppl (November 1, 2019): 18. http://dx.doi.org/10.1200/jco.2019.37.31_suppl.18.
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18 Background: Cancer self-management involves active partnership between patients and their informal caregivers (ICs). There is a dearth of literature on ICs to lung cancer patients. Multi-modality treatment and profound challenges in symptom management and lifestyle adjustment are hallmarks of this population. This study aimed to describe the characteristics of, and resources utilized by ICs to lung cancer patients and examine the association between symptom severity and a) caregiver burden and b) perceived support. Methods: This study was conducted at a cancer centre north of Toronto, Canada. Dyads of lung cancer patients receiving outpatient treatment and their self-identified ICs (N = 39) were recruited. Upon consent, participants completed a one-time survey which assessed study variables employing previously validated instruments, including: patient’s functional status, caregiver burden, caregiver’s perceived social support and utilization of resources to enhance self-management. Descriptive analysis was used to describe our sample and frequency of resource utilization. Pearson’s correlation was used to examine the association between symptom severity and a) caregiver burden and b) perceived support. Results: The study sample consisted of middle-aged patients and caregivers (median 55-64 years). A majority of caregivers were female (76.2%), received education above college level (56.1%) and were immediate family members (80.9%). The most frequently utilized resources were the lung cancer patient handbook (48.8%), followed by personal support worker (29.3%). Caregiver support group was the least utilized (10%) resource. Patient’s symptom severity was negatively correlated with one aspect of caregiver burden, caregiver’s self-esteem (r = -0.36, p < 0.05). Conclusions: Findings indicated similarities in caregiver demographics to carers of other patient populations. Informational support and material aid appeared to be the most important resources. Patients’ well-being had the greatest impact on caregivers’ self-esteem, indicating implications on person-centred care and collaborative patient-provider relationships to support patient self-management.
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Wardlaw, Linda A. "Sustaining Informal Caregivers for Persons with AIDS." Families in Society: The Journal of Contemporary Social Services 75, no. 6 (June 1994): 373–84. http://dx.doi.org/10.1177/104438949407500606.
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Friends, partners, and relatives of persons with HIV/AIDS face significant challenges in providing for the emotional, physical, and practical needs of their loved ones. Moreover, the responsibilities of caregiving often disrupt work life, finances, living arrangements, and relationships with family and friends as well as tax the emotional and physical well-being of the caregiver. The author reports on the experiences of 642 informal caregivers to persons with AIDS in order to identify the type of care provided; the physical, emotional, and financial costs of caring for a loved one with AIDS; the resources available to assist caregivers; and the benefits of providing such care.
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Miyawaki, Christina E., Erin D. Bouldin, Christopher A. Taylor, and Lisa C. McGuire. "Baby Boomers Who Provide Informal Care for People Living with Dementia in the Community." International Journal of Environmental Research and Public Health 18, no. 18 (September 15, 2021): 9694. http://dx.doi.org/10.3390/ijerph18189694.
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One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health status to caregivers for persons with conditions other than dementia using 2015–2018 Behavioral Risk Factor Surveillance System data (N = 10,602). We identified caregiving status (assisting a family member/friend with a long-term illness or disability in the past month, managing personal care, and not caring for a child/grandchild) and whether the care recipient’s major health condition was dementia. We calculated weighted estimates and used chi-square tests and log-binomial regression for comparisons of selected characteristics. Among Baby Boomer caregivers, 15.4% were caring for someone with dementia. Dementia caregivers were more likely to be female, caring for a parent/parent-in-law, and providing care longer than caregivers for persons without dementia. After adjusting for sociodemographic and caregiving characteristics, the prevalence of fair/poor health, frequent mental distress, and chronic conditions were similar across types of caregivers. Although no differences in caregiver’s physical and mental health by care recipient’s dementia status were found, we should underscore the importance of maintaining Baby Boomer caregivers’ health and well-being.
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Du, Yan, Brittney Lewis, Katrina Lopez, Chengdong Li, Carole White, Sudha Seshadri, and Jing Wang. "Developing a Comprehensive Model for Improving Quality of Life in Individuals with Alzheimer Disease and Related Dementia and Their Informal Caregivers: Qualitative Study of AZL Forum Data." Iproceedings 5, no. 1 (October 2, 2019): e16230. http://dx.doi.org/10.2196/16230.
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Background It is estimated that more than five million Americans are living with Alzheimer disease and related dementia (ADRD), and the population of people living with the disease is expected to triple by 2060. Most care for persons living with ADRD is provided by informal caregivers. However, current strategies to improve the quality of life for both people living with ADRD and their informal caregivers are not optimal, especially from a comprehensive approach. Social media and online forums have become increasingly popular tools for ADRD caregivers to manage the burden of caregiving. Objective This study was to 1) explore informal caregivers’ discussion topics by analyzing the caregiver online forum data, and 2) develop a comprehensive model based on their discussion topics, with the aim to improve quality of life for both persons living with ADRD and their informal caregivers. Methods Publicly available peer interactions of 4102 registered users, with 96% self-claimed as informal caregivers (67% as a child of a person with dementia, 13% as a partner/spouse, and 7% as a relative) on the Alzheimer’s Association ALZ Connected Caregivers Forum were extracted in January 2019 using computer programming. A total of 40,798 postings were collected. All authors agreed to use a triangular model to serve as the predetermined three major themes to categorize all codes. The three major themes were factors of caregivers, factors of individuals with ADRD, and factors of care context. Inductive coding was used to derive in vivo codes from the data, and the codes were further refined throughout the coding process. Two researchers independently coded postings until saturation was reached. Discrepancies were discussed among the two researchers to reach consensus. A third senior researcher’s opinion was referred to whenever necessary. Results For factors of caregivers, the most frequent subthemes were perceived caregiver burden, caregiver’s life balance, caregiving strategies, communication, expectations, personal health issues, poor relationship, and ineffective coping. Subthemes of factors of individuals with ADRD included changes in abilities and capacities, commodities, behaviors, health conditions, daily living function, disengagement, and ineffective coping. Lastly, for factors of care context, the most frequent themes were family support, financial support, informational support, professional support, length of care provided, living arrangement, activities and stimulation, patient health care coordination, unexpected situations, communication, and physical environment. One theme under one of the triangular factors may influence another theme under another triangular factor and vice versa. Conclusions By analyzing the discussions of informal caregivers on ALZ online forum, we found that taking care of a loved one with ADRD is challenging for informal caregivers. The challenges may affect the quality of life for both caregivers and the caregiver recipients; factors of care recipients, caregivers, and the care context interactively affect perceived challenges of caregivers. This study has identified a comprehensive model which may be used to help improve quality of life for both informal caregivers and people living with ADRD. Our next step is to use these manually determined codes to analyze all extracted postings via machine learning to improve this model.
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Shune, Samantha E., and Ashwini Namasivayam-MacDonald. "Dysphagia-Related Caregiver Burden: Moving Beyond the Physiological Impairment." Perspectives of the ASHA Special Interest Groups 5, no. 5 (October 23, 2020): 1282–89. http://dx.doi.org/10.1044/2020_persp-20-00067.
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Purpose The biopsychosocial ramifications of dysphagia are widespread. However, its influence on informal caregivers and families is often overlooked. Ultimately, the health and well-being of an entire family is central to care provision. This tutorial introduces readers to the current literature on dysphagia-related caregiver burden and third-party disability, illustrates the consequences of such burden on both caregivers and patients, and suggests strategies for better supporting patients' informal caregivers. Conclusions It is essential that speech-language pathologists recognize that the consequences of dysphagia are not limited to the impairment itself and acknowledge dysphagia's substantial impact on the entire family system. More general health care literature suggests that asking caregivers individual questions, modifying the language used to talk with them, providing them with targeted education and resources, and organizing support groups may all be beneficial for increased perceived support and self-efficacy. Ultimately, in order to best meet the needs of our patients with dysphagia, we must also better meet the needs of their families and other informal caregivers.
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Lucke, Kathleen T., Hernando Martinez, Thomas B. Mendez, and Lyda C. Arévalo-Flechas. "Resolving to Go Forward." Qualitative Health Research 23, no. 2 (December 20, 2012): 218–30. http://dx.doi.org/10.1177/1049732312468062.
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Little is known about the experiences and needs of family caregivers of Latino/Hispanic individuals with spinal cord injury (SCI) during the early years of recovery. The purpose of this grounded theory study was to describe the experiences and identify the informational, decisional, interpersonal, and resource support needs of family caregivers of newly injured Latino/Hispanic individuals with SCI during the first 2 years after undergoing rehabilitation. “Resolving to go forward” was the core category that emerged from two simultaneous processes of “learning to care for” and “getting through” during the initial years as the primary informal caregiver. Most caregivers felt alone and abandoned after the injured person returned home, and experienced barriers to services and resources primarily because of language issues and economic status. We recommend that researchers develop and evaluate culturally appropriate, informal caregiving models to improve outcomes for both Latino individuals with SCI and their family caregivers.
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Liu, Yujun, Yuxin Zhao, and M. Courtney Hughes. "HEALTH BEHAVIORS AND MENTAL HEALTH OUTCOMES OF INFORMAL CAREGIVERS DURING THE COVID-19 PANDEMIC." Innovation in Aging 6, Supplement_1 (November 1, 2022): 697. http://dx.doi.org/10.1093/geroni/igac059.2553.
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Abstract Differences exist in health behaviors and mental health outcomes between spouse and adult children caregivers and between caregivers of individuals with or without dementia. We aimed to examine the change in health behaviors and mental health outcomes of informal caregivers of older adults during the COVID-19 pandemic and explore disparities based on caregiver relationship and care recipient. Using the 2020 National Health and Aging Trends Study (NHATS) COVID-19 supplement for Family Members and Friends, our sample included adult family or friend caregivers of Medicare beneficiaries aged 65 or older in the US (N = 2,062). We used ANOVA and two-way ANCOVA to assess the effects of the pandemic, caregiver relationship type, and care recipient condition (dementia vs. non-dementia) on seven health behaviors and two mental health outcomes. We performed all post hoc analyses using Bonferroni corrections controlling the covariates age, gender, marital status, education, and self-reported health of the caregiver. Compared to before the pandemic and to spouse caregivers, adult children caregivers reported: 1) significantly less time walking and significantly more time watching TV or online programs, and 2) a significantly higher level of emotional distress and depressive symptoms. Compared to caregivers for people without dementia, those who provide care for people with dementia experienced less sleep and a higher level of depressive symptoms during the pandemic than before the pandemic. Health professionals should consider the impact of COVID-19 and the vulnerability of adult children caregivers and caregivers of individuals with dementia when designing and delivering health and wellness programs.
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Laparidou, Despina, Jo Middlemass, Terence Karran, and A. Niroshan Siriwardena. "Caregivers’ interactions with health care services – Mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia – A qualitative study." Dementia 18, no. 7-8 (January 31, 2018): 2526–42. http://dx.doi.org/10.1177/1471301217751226.
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Background There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation. Aim The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals’ views and current practice regarding people with dementia and their interactions with informal caregivers. Method We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework. Results We interviewed 18 caregivers and 17 healthcare professionals. Five themes, mapped to the stress-process in caregivers’ model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers’ needs and expectations of an in-depth knowledge and understanding of dementia from healthcare professionals; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool. Conclusions Fragmentation of dementia care services, lack of training for healthcare professionals and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient.
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Pointon, L., R. Grant, S. Peoples, S. Erridge, P. Sherwood, M. Klein, and F. Boele. "P12.06 Unmet needs and wish for support of informal caregivers of primary brain tumour patients." Neuro-Oncology 23, Supplement_2 (September 1, 2021): ii31—ii32. http://dx.doi.org/10.1093/neuonc/noab180.108.
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Abstract BACKGROUND Most primary brain tumour patients rely on informal caregivers (i.e. family members or friends) for practical and emotional support. While caregiving can be rewarding, it also commonly leads to significant burden. In developing support for caregivers, it is vital to distinguish between caregivers’ unmet needs, and their actual wish for support to resolve unmet needs. We aimed to 1) identify the presence and magnitude of unmet needs; 2) examine associations between unmet needs and desire for support; 3) evaluate perceived usefulness of caregiver needs screening in clinical practice. MATERIAL AND METHODS Family caregivers of patients with primary brain tumours were recruited and asked to complete an adapted version of the Caregiver Needs Screen (CNS). This covered the level of distress resulting from 33 common issues in neuro-oncology caregiving (scale 0–10), and wish for information or support for any issue (yes/no). In addition, participants were asked to rank (0–7) their experience of using the CNS based on items covering ‘ease of us’, ‘usefulness’ and ‘satisfaction’. Descriptive and correlational analyses were applied. RESULTS Caregivers (N=79) reported between 1–33 unmet needs (M=17.20, sd=7.98) but did not always wish for support for each need (range 0–28, M=4.71, sd=6.63). Most distressing items were patient’s fatigue (M=5.58), recognising signs of disease progression (M=5.23), changes in patients’ thinking or behaviour (M=5.04), patient distress or sadness (M=4.68), and changes in caregivers’ own emotional health (M=4.44). A weak correlation was found between the total number of unmet needs and the desire for support (r=0.296, p=0.014). Caregivers most often desired support with recognising disease progression (N=24), managing medications and side-effects (N=18), and least often with managing spiritual issues (N=0), communication with (grand)children (N=2) and communication with family members and friends (N=3). Caregivers evaluated the CNS tool positively (mean item scores ranging 4.19–6.21 out of 7). CONCLUSION Family caregivers of brain tumour patients experience distress resulting from many neuro-oncology specific needs, but this is not directly related to a wish for support or information. Caregiver needs screening could be useful to tailor support or information to suit caregivers’ preferences in clinical practice.
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Krisor, Susanna Maria, and Jens Rowold. "Personal and organizational resources of family caregivers ' well-being." Personnel Review 43, no. 3 (April 14, 2014): 401–18. http://dx.doi.org/10.1108/pr-11-2012-0196.
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Purpose – Previous research on the work-family nexus has tended to concentrate on childcare responsibilities. This neglects consideration of an increasing population of employees who care for dependents such as elders, impaired partners or disabled children. Therefore, the aim of this study is to investigate organizational and personal resources as antecedents of work-family conflict (WFC) and irritation in a sample of employed family caregivers. Design/methodology/approach – Data were collected from 508 employees within one organization who had informal family caregiving responsibilities. Findings – The results indicate that a supportive work-family culture was an important resource for reducing WFC and health-related self-efficacy reduced irritation. In sum, when a company fosters a family-friendly culture that includes working in a constructive and understanding manner with employees who have informal family caregiver responsibilities, it becomes easier for the employees to integrate the demands of work and family demands. Moreover, health-related self-efficacy is an important resource that can improve stress and future researchers should give it greater consideration. Originality/value – This study contributes to existing literature by the identification of personal and organizational resources of informal family caregivers with the aim to reduce their stress experiences.
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Hassan, Alhassan Yosri Ibrahim, Giovanni Lamura, and Mariët Hagedoorn. "Predictors of digital support services use by informal caregivers: a cross-sectional comparative survey." BMJ Open 12, no. 4 (April 2022): e059897. http://dx.doi.org/10.1136/bmjopen-2021-059897.
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ObjectivesDigital support services may provide informal caregivers with remote access to information and training about care issues. However, there is limited specific data on how factors such as demographics, socioeconomic resources and the caregiving context may influence caregivers’ use of digital support services. The aim of this study is to identify associations between informal caregiver’s characteristics and the use of the internet to access digital support services in two countries: Italy and Sweden.Setting and participantsA sample of 663 respondents who have access to the internet participated in a cross-sectional survey by completing the online questionnaire. Respondents were recruited by the Italian National Institute of Health and Science on Ageing and the Swedish Family Care Competence Centre.Primary and secondary outcome measuresLogistic regression analyses were performed to assess predictors of caregivers’ frequent use of the internet to access digital support services.ResultsEducational attainment (OR 3.649, 95% CI 1.424 to 9.350, p=0.007), hours per week spent caring (OR 2.928, 95% CI 1.481 to 5.791, p=0.002), total household income (OR 0.378, 95% CI 0.149 to 0.957, p=0.040), care recipient relationship to the caregiver (OR 2.895, 95% CI 1.037 to 8.083, p=0.042) and gender of care recipient (OR 0.575, 95% CI 0.356 to 0.928, p=0.023) were significant predictors in the multivariate analysis for the Italian caregivers group. Hours per week spent caring (OR 2.401, 95% CI 1.105 to 5.218, p=0.027) and age of caregiver (OR 2.237, 95% CI 1.150 to 4.352, p=0.018) were significant predictors in the multivariate analysis for the Swedish caregivers group.ConclusionsDigital support services could be important tools to empower informal caregivers. When it comes to policy and practice in relation to caregivers, similarly to other broad vulnerable groups, there is no ‘one-size-fits-all’ approach, and it is therefore important to consider the specific characteristics and needs of both caregivers and care recipients.
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Chou, Yueh-Ching, Li-yeh Fu, Li-Chan Lin, and Yue-Chune Lee. "Predictors of subjective and objective caregiving burden in older female caregivers of adults with intellectual disabilities." International Psychogeriatrics 23, no. 4 (August 12, 2010): 562–72. http://dx.doi.org/10.1017/s1041610210001225.
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ABSTRACTBackground: Informal, unpaid, and lifelong older caregivers of adults with intellectual disabilities (ID) are usually female and most often are mothers of adults with ID. However, research exploring different predictors of subjective and objective burden among these older female caregivers is sparse. The objective of this study was to examine whether the subjective and objective burden as well as positive appraisals are predicted by the same or different variables linked to the caregivers and the adults with ID.Methods: Face-to-face interview questionnaires were administered in a city in Taiwan in 2006–2007 and 350 female family caregivers aged 55 years and older completed the interview in their homes. The independent variables included adult care demands and caregiver variables, while the dependent variables were caregivers’ subjective burden, caregivers’ objective burden and caregivers’ positive appraisals.Results: The results demonstrated that adult care demands were associated more with the objective than the subjective caregiving burden. The strongest predictors of both subjective and objective burden were the care recipient's instrumental activities of daily living functionality, caregiver's age, and caregiver's health status. The significant predictors for positive caregiving appraisals were the caregiver's age and the caregiver's level of social support.Conclusions: The results indicate that both the subjective and objective burdens were mostly related to the same factors, that is, to the characteristics of the older female caregivers and the recipients of care with ID. On the other hand, positive attitudes towards caregiving roles were only associated with caregiver variables.
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Savla, Jyoti, Karen Roberto, and Jennifer Margrett. "Aspects of Grit Among Dementia Family Caregivers." Innovation in Aging 5, Supplement_1 (December 1, 2021): 8. http://dx.doi.org/10.1093/geroni/igab046.029.
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Abstract Dementia family caregivers often show deep devotion and a strong sense of purpose and duty toward their relatives needing care. The concept of grit, which includes aspects of commitment, purpose, perseverance, and resilience, is a novel theoretical approach to expanding understanding of dementia family caregiver strengths amidst the challenges they face. Multiple psychosocial and contextual factors are likely to interact with and influence grit among these caregivers. This symposium addresses commitment to the family dementia caregiver role, willingness to embrace the stressful work of caregiving, and perseverance in finding ways to sustain caregiving roles under typical and adverse circumstances. Blieszner focuses on associations between grit and stressors and strains that challenge caregiver well-being and jeopardize continued caregiving. Wilks considers the impact of spiritual support on sustaining resilience among Caucasian and African American dementia caregivers. McCann explores caregivers’ responses to changes in informal support and social interactions available to assist with home care tasks over the course of the COVID-19 pandemic. Albers examines the strengths and resources caregivers draw upon to manage the challenges of caring for and supporting a relative in long-term residential care during the pandemic. Collectively, these presentations provide new insights into the range of influences on aspects of grit and circumstances in which grit sustains caregiving. Discussant Margrett considers the value of the concept of grit for furthering understanding of caregivers’ abilities to manage typical and unique challenges in their caregiver roles and offers suggestions for future research and interventions to enhance grit among dementia family caregivers.
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Schwartz, Abby, Leanne J. Clark-Shirley, and G. Rainville. "GENERAL AND GENDER-SPECIFIC DYNAMICS DETERMINING THE HEALTH STATUS OF WORKING INFORMAL CAREGIVERS." Innovation in Aging 3, Supplement_1 (November 2019): S736. http://dx.doi.org/10.1093/geroni/igz038.2699.
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Abstract As the gender divide among family caregivers closes, it is important to understand whether and how men and women differently experience caregiving. For example, literature suggests that employed family caregivers experience burden and health outcomes differently than unemployed caregivers, but less is known about how these factors affect men and women differently. Using data from Caregiving in the U.S., 2015 (source: AARP and NAC), this study reliably modelled the effect of multiple threats to good health within the caregiving role (e.g. physical, financial, and emotional strain). In the analysis, several moderated relationships were observed using data from 816 working caregivers. In the full sample, the relationship between objective caregiving burden (hours of care and counts of ADLs/IADLs) and self-reported health status was altered by financial strain. In the high burden condition, relatively poor health was progressively related to increasing levels of financial strain controlling for traditional covariates. In separate analyses for males and females, this moderated relationship was discovered to be limited to female caregivers. Physical and emotional strain did not moderate the relationship between burden and health. Several covariates related to employment conditions (e.g., caregiver-friendly workplace policies) behaved differently across models and are presented and discussed in relation to financial strain as a determinant of caregiver health. These findings shed light on gender-based differences in caregiver outcomes, and suggest that interventions aimed at assessing and improving caregiver health should account for the financial strain experienced particularly by women.
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Gallopyn, Naomi, Kathrin Boerner, and Lisa Iezzoni. "Formal and Informal Caregiving: Implications for Paid Family Caregivers Under the Consumer-Directed Model." Innovation in Aging 4, Supplement_1 (December 1, 2020): 572. http://dx.doi.org/10.1093/geroni/igaa057.1897.
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Abstract The case of paid family caregiving under the consumer-directed model introduces unique complexities to patient care, especially in the presence of other formal caregiving. The purpose of this study was to address the interface of paid and family caregiving by exploring scenarios where the two types of caregiving overlap or are merged into one role. Participants were 20 formal caregivers and 21 persons with significant disability, recruited with a purposive sampling approach. In-depth, qualitative interviews were conducted with caregivers and patients to triangulate information from different perspectives. Thematic analysis uncovered pathways into formal caregiving that involved a history of family caregiving, transitions from informal family caregiving to formal family caregiving under the consumer-directed model, and challenges that emerged when formal and informal caregivers co-exist in the same environment. Implications for patient and caregiver experiences in care contexts where the boundaries between paid and unpaid care are blurred are discussed.
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Mattei, G., I. Goldoni, F. Mariani, G. Casu, L. Boccaletti, S. Ferrari, L. Ligabue, and A. Colantoni. "Predictive factors of hospitalization related to the caregiver burden in older adults presenting to the emergency department." European Psychiatry 41, S1 (April 2017): S174—S175. http://dx.doi.org/10.1016/j.eurpsy.2017.01.2071.
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BackgroundLong-term care for the elderly by their family members represents a serious burden in Italy. The physical and psychological health of informal caregivers is a growing public health issue. Old patients often seek urgent medical attention in the Emergency Department (ED) and hospitalisation is frequent event among the elderly.AimAim of the study was (1) to investigate the burden of care among the caregivers of old patients; (2) to examine the influence of the burden experienced by the caregivers on ED and hospital admissions of the elderly.MethodsWe conducted a descriptive study of patients aged 75 years or older and their caregiver admitted to the ED from 10/1/15 to 6/10/15 (77 patient-caregiver pairs). The caregivers were evaluated using the Caregiver Burden Inventory (CBI). A case manager collected the patient's data.ResultsCBI score is the highest among patients seeking ED evaluation due to caregiver's concern. The majority of the elderly admitted to the ED whose caregiver shows elevated emotional burden at the CBI do not present with serious or urgent medical condition and are not hospitalised. Emotional burden is the highest among the caregivers of demented subjects who share the same house.ConclusionOur findings indicate that the burden experienced by caregiving family members plays a role in elderly people avoidable ED visits.Disclosure of interestThe authors have not supplied their declaration of competing interest.
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Kataoka-Yahiro, Merle R., James Davis, Lana Sue Ka’opua, and Angela Sy. "Sociodemographic Characteristics and Preferences for Family (Informal) and Formal Caregiver Help With ADLs." Home Health Care Management & Practice 31, no. 2 (October 8, 2018): 120–27. http://dx.doi.org/10.1177/1084822318801811.
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The purpose of this article was to compare sociodemographic characteristics and various care preferences for family and formal caregivers help with activities of daily living (ADLs). The sample was 56,337 noninstutionalized U.S. civilian adults, 40 to 65 years of age. This is a cross-sectional study using secondary data from the National Health Interview Survey (NHIS)—2011 to 2014. Respondents’ sociodemographic characteristics and various care preferences for caregiver help with ADLs were analyzed. Subsequent analysis examined associations using adjusted multivariable logistic regression models. Preference for family caregivers help with ADLs was independently and significantly associated with race/ethnicity, age, gender, education, acculturation, and income. Future studies need to examine sociodemographic characteristics and caregiver preferences to tailor health care services for aging adults in the United States.