Relevant bibliographies by topics / Informal family caregivers

Academic literature on the topic 'Informal family caregivers'

Author: Grafiati
Published: 10 December 2022
Last updated: 28 January 2023

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Journal articles on the topic "Informal family caregivers"

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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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Dissertations / Theses on the topic "Informal family caregivers"

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Tate, Anne J. "All on the family informal caregiving in America /." online access from Digital Dissertation Consortium, 2006. http://libweb.cityu.edu.hk/cgi-bin/er/db/ddcdiss.pl?1432821.

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Smith, Paula Caroline. "Family caregivers in palliative care : perception of their role and sources of support." Thesis, University of Southampton, 2000. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.340333.

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Smith, Hinders Julie Ann. "Unmet Support Needs of Informal Caregivers of Older Adults." ScholarWorks, 2019. https://scholarworks.waldenu.edu/dissertations/6375.

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Due to projected growth of the 65-and-older population and concerns of an impending care gap, reliance on informal caregivers is expected to increase. Improving support for informal caregivers is viewed as a national priority, yet research related to the unmet support needs of informal caregivers is limited. The purpose of this cross-sectional correlational study was to examine predictive relationships between contextual factors (caregiving relationship and type of illness) and environmental factors (rurality) and the unmet support needs (classes, service access, support groups, counseling, and respite) of informal caregivers of older adults. The theoretical framework was Bronfenbrenner's ecological systems theory. Archival data were drawn from the 2015 Behavioral Risk Factor Surveillance System optional caregiver module dataset provided by the Centers for Disease Control and Prevention. Findings from multiple logistic regression analysis revealed that spousal caregivers had 42.7% lower odds than adult child caregivers of reporting unmet support needs related to service access. Dementia caregivers had 2.05 times higher odds of reporting unmet support needs of counseling, 1.31 times higher odds of reporting unmet support needs related to service access, and 1.91 times higher odds of reporting unmet support needs for respite care, relative to other caregivers. Caregivers residing in a suburban county had 28.7% lower odds and caregivers not residing in a metropolitan statistical area (MSA) had 30.5% lower odds of reporting unmet support needs related to service access, relative to caregivers residing in the center city of an MSA. Health care leaders and policymakers may use the findings to distribute resources and tailor interventions to better meet the needs of informal caregivers of older adults.
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Sjölander, Catarina. "Consequences for family members of being informal caregivers to a person with advanced cancer." Doctoral thesis, Hälsohögskolan, Högskolan i Jönköping, HHJ, Avd. för omvårdnad, 2012. http://urn.kb.se/resolve?urn=urn:nbn:se:hj:diva-19819.

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Aim: The overall aim is to generate knowledge about consequences of informal caregiving for the family members of patients diagnosed with advanced cancer, over a one-year period, including the family members’ health, health-related quality of life, health care utilization, and associated costs. Furthermore, the family members’ management of their stressful daily life and the meanings of social support networks in the early stage will be explored in order to get deeper understanding. Method: The thesis is based on two quantitative prospective studies (I–II) and two qualitative cross-sectional studies (III–IV). Studies I–II involved data from the same study group of 36 family members to relative with cancer. Use was made of questionnaires about sociodemographic characteristics, informal caregiving, leisure activities and absence from work (Study I), also of the Short Form 36 Health Survey (SF–36) and EuroQol (EQ–5D) (Study II), during a 1-year period starting 3 months after diagnosis. Study I also included a telephone interview and a review of medical records. Twenty family members were interviewed in Study III, 17 in Study IV; and the interviews were subjected to latent content analysis. Results: The findings indicate that family members’ informal caregiving influence the risk of morbidity with increased health care utilization and lower health-related quality of life the year following the diagnosis. The number of hours spent giving the patients was highest in respect of emotional support. If professional caregivers as home help care assistants had provided the support, it would be equivalent to a cost of 327,000 SEK per 15 months. The medical records indicated increased morbidity with increased health service use (physician consultations), more psychiatric disorders and more musculoskeletal diseases during the follow-up period (Study I). No statistically significant differences in health-related quality of life (HRQOL) were found within the study group over the 1-year follow-up in either physical or mental dimensions. However, the family members did have mental HRQOL scores significantly lower than the norm-based ones as measured throughout the year by SF–36. In addition, results showed that older age and being a partner had a negative influence on HRQOL (Study II). Management employed by family members during the early stage after patient diagnosis was expressed by the theme Striving to be prepared for the painful, based on emotion-focused strategies except the problem-focused strategy to ‘Making things easier in everyday life’ both for the sick person and for themselves (Study III). The meaning of the social support network was expressed by the theme Confirmation through togetherness, covering emotional and, to a lesser extent, instrumental support. Confirmation through togetherness derived principally from information, understanding, encouragement, involvement and spiritual community. Need of support, Desire for a deeper relationship with relatives and Network to turn to were identified as antecedents to social support. Social support involves reciprocal exchange of verbal and non-verbal information (Study IV).   Conclusions: The results of this thesis provide knowledge of family members’ risk of morbidity, which motivates developing guidelines for preventing both physical and mental morbidity. Developing valid measurement of the meaning of social support network for the individual patient could encourage nurses and other health-care professionals to focus on family members’ personal networks as a way to strengthen their mental health.
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Merritt, Rebecca. "The Decision Making Process of Informal Caregivers of Dementia Family Members Regarding Nursing Home Placement." VCU Scholars Compass, 2010. http://scholarscompass.vcu.edu/etd/2334.

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The purpose of this study was to understand the decision making process of caregivers placing their elderly family members in a nursing home facility. Experiential Learning Theory (ELT) was used, as well as the Critical Incident Technique (CIT). ELT was utilized in an effort to understand the learning that took place during the caregiving experiences, and CIT was used to better understand the critical incidents that led the caregivers to seek nursing home placement. A sample of twelve former informal dementia caregivers between the ages of fifty-seven and eighty-seven was drawn from the metropolitan Richmond, Virginia area. In-depth interviews were audiotaped and provided the primary source of data for this study. An interview protocol consisting of eleven open-ended questions derived from current dementia caregiving literature guided the conversation between the researcher and the caregivers in the sample. A constant comparison method was used in this study. The findings revealed that there are a variety of reasons why informal dementia caregivers seek nursing home placement for their family members. Themes related to the decision making process to seek nursing home placement include (1) dementia related behaviors, (2) safety concerns, (3) emotional and psychological burden, and (4) unexpected medical intervention. Indicators of each theme found in this study suggest that providing informal care for an individual with dementia can be very overwhelming and challenging. Although there were some positive aspects associated with this form of caregiving, such as feelings of pride and self-worth, the overall consensus from this study was that dementia caregiving is a very difficult experience in which the primary caregiver had to ultimately seek formal placement in a nursing home for their family member for a variety of reasons.
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Osborne-Lewis, Emily Jane, and Shanta LaShawn Clardy. "The needs of informal grandparent caregivers and how they are met at the Kinship Family Center." CSUSB ScholarWorks, 2005. https://scholarworks.lib.csusb.edu/etd-project/2790.

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Seventeen grandparent caregivers, who have primary responsibility for one or more grandchildren and do not have a parent of the grandchildren living in the household, were interviewed to evaluate the effectiveness of the services offered by Kinship Family Center (KFC), a non-profit support agency for relative caregivers and the children in their care. Kinship Family Center is a program of the Central City Lutheran Mission and is funded by the San Bernardino County Department of Children's Services. The researchers found that KFC was an effective asset for informal grandparent caregivers. For grandparents, it was a source of support and comfort in their role of "second time around parents." For children, it served as a means to help identify with other children in similar situations.
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Koumoutzis, Athena N. "Age Differences in Stressors and Outcomes Among Young Adult, Midlife, and Older Adult Caregivers." Kent State University / OhioLINK, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=kent1553839757877709.

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Reid, Roxroy Anthony. "Improving the Experiences of Informal and Formal Alzheimer's Disease and Dementias Caregivers." ScholarWorks, 2015. https://scholarworks.waldenu.edu/dissertations/1209.

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Informal and formal caregivers of persons with Alzheimer's disease and related dementias (ADRD) encounter a more difficult and unique set of challenges than do caregivers of individuals with general disabilities. If adequate caregiver supports are not provided, caregivers may experience increased strain as the disease progresses, increasing the likelihood of unnecessary institutionalization of their care recipients and increasing the cost to the public. Using rational choice theory and political systems theory, the purpose of this study was to differentiate between the phenomenological experiences of formal and informal caregivers of ADRD patients. The overall research was a qualitative design that used semi-structured interviews to collect data from 5 formal and 5 informal caregivers who were recommended by the local Alzheimer's association chapter. Data were analyzed using direct content analysis of recurrent themes including how policymakers might respond to needs for respite, support, and more resources. Research findings suggested more education is needed about the disease and how best to give care for both formal and informal ADRD caregivers. Furthermore, distinctions between formal caregivers and informal family caregivers and their care recipients were identified, and these details should be noted by policymakers. Informal ADRD caregivers would benefit more from the research findings. Particular benefits would include financial supports, additional funding for caregiver respites, more education, and better care methods for ADRD care recipients. These recipients are rapidly growing in numbers and pose unique 21st century socioeconomic challenges to informal caregivers.
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Al, Awar Zeina. "Using HIT to Support Informal Caregivers of Cancer Patients at Home: a Needs Assessment." Thesis, Université d'Ottawa / University of Ottawa, 2016. http://hdl.handle.net/10393/34112.

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Introduction: This research investigated the requirements of an HIT solution that is usable and useful to informal caregivers of cancer patients on home palliative care. Methodology: A needs assessment method was used with an exploratory and a confirmatory stage. Eight semi-structured interviews and two focus groups were used for data collection. Qualitative content analysis was used to analyse caregiver experiences with both inductive and deductive coding. Results/Discussion: Expressed and unexpressed caregiver needs were extracted into four categories, Implementation, Presentation, Information, and Practical Caregiving, and used to create the application requirements. Five user personas were created based on caregiving intensity and the functional level of the patients, a method of tailoring the application content to the different personas was created, and a low-fidelity prototype of the application was designed. Conclusion: The findings of this research can improve the preparedness and coping of informal caregivers of cancer patients on home palliative care.
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Weierbach, Florence M. "Who Provides Care in the Home for the Tri-State Area Elderly: Sn Assessment of Informal Family Caregiver’s Perception of Health?" Digital Commons @ East Tennessee State University, 2013. https://dc.etsu.edu/etsu-works/7401.

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Books on the topic "Informal family caregivers"

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Hendrickson, Michael C. State tax incentive programs for informal caregivers and the elderly. S.l: s.n., 1988.

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B, Neal Margaret, ed. Balancing work and caregiving for children, adults, and elders. Newbury Park: Sage Publications, 1993.

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Eva, Kahana, Biegel David E, Wykle May L, Center for Practice Innovations, and Mandel School of Applied Social Sciences (Case Western Reserve University), eds. Family caregiving across the lifespan. Thousand Oaks: Sage Publications, 1994.

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1946-, Grant Gordon, and Keady John 1961-, eds. Understanding family care: A multidimensional model of caring and coping. Buckingham: Open University Press, 1996.

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Mandel School of Applied Social Sciences (Case Western Reserve University), ed. Family caregiving in mental illness. Thousand Oaks: Sage Publications, 1996.

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Carol, Levine, and Murray Thomas H. 1946-, eds. The cultures of caregiving: Conflict and common ground among families, health professionals, and policy makers. Baltimore: Johns Hopkins University Press, 2004.

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E, Biegel David, and Blum Arthur, eds. Aging and caregiving: Theory, research, and policy. Newbury Park, CA: Sage Publications, 1990.

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Martin, Emily J., and Eric J. Roeland. Benefits of Early Palliative Care to Informal Family Caregivers (DRAFT). Edited by Nathan A. Gray and Thomas W. LeBlanc. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780190658618.003.0004.

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This chapter summarizes the Dionne-Odom et al. randomized controlled trial evaluating the benefits of an early, nurse-led palliative care intervention to caregivers of patients with advanced cancer. The study examined the impact of early (at diagnosis) versus delayed (12 weeks later) intervention on caregiver quality of life, depressed mood, and burden. The study showed that early intervention caregivers had lower depression scores at three months compared to the delayed group caregivers. Terminal decline analyses also showed lower depression and stress burden scores in the caregivers who received the early intervention. This chapter describes the basics of the study, including funding, year study began, year study was published, study location, who was studied, who was excluded, how many patients, study design, study intervention, follow-up, endpoints, results, and criticism and limitations. The chapter briefly reviews other relevant studies and information, gives a summary and discusses implications, and concludes with a clinical case.
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Lauzon, Sylvie Eliane. RELATIONSHIPS AMONG INFORMAL CAREGIVING, SOCIAL SUPPORT AND HEALTH IN WIFE CAREGIVERS TO ELDERS. 1995.

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Family Care And Social Capital Transitions In Informal Care. Springer, 2013.

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Book chapters on the topic "Informal family caregivers"

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Grande, Gunn, and Gail Ewing. "Informal/Family Caregivers." In Textbook of Palliative Care, 967–84. Cham: Springer International Publishing, 2019. http://dx.doi.org/10.1007/978-3-319-77740-5_52.

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Grande, Gunn, and Gail Ewing. "Informal/Family Caregivers." In Textbook of Palliative Care, 1–19. Cham: Springer International Publishing, 2018. http://dx.doi.org/10.1007/978-3-319-31738-0_52-1.

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Haavisto, Elina, Johanna Saarinen, and Anu Soikkeli-Jalonen. "Family Caregivers in Palliative Care in the Hospital Setting." In Informal Caregivers: From Hidden Heroes to Integral Part of Care, 131–49. Cham: Springer International Publishing, 2023. http://dx.doi.org/10.1007/978-3-031-16745-4_8.

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Dykstra, Pearl A., and Maja Djundeva. "Policies for Later-Life Families in a Comparative European Perspective." In The Palgrave Handbook of Family Policy, 331–67. Cham: Springer International Publishing, 2020. http://dx.doi.org/10.1007/978-3-030-54618-2_14.

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AbstractIn this chapter, we consider cross-national differences in policies for later-life families in Europe, focusing on state support freeing family members from caring responsibilities or enabling them to care. These policies come under the umbrella of long-term care (LTC), help required by persons with a reduced degree of functional capacity for an extended period of time. Publicly funded LTC includes “in-kind” services, where care is provided by professionals at home or in an institution, and “cash benefits” which can be used to purchase professional care or which can be paid to informal caregivers as income support. Apart from long-term care for dependents themselves, there are policies supporting family members in their caregiving tasks: “cash for care” (financial compensation for helping those with impairments), “care leaves” (the right to be absent from work in order to care), and “care credits” (time spent on caring that is credited towards a basic pension).
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Wisniewski, Pamela, Celia Linton, Aditi Chokshi, Brielle Perlingieri, Varadraj Gurupur, and Meghan Gabriel. "We Have Built It, But They Have Not Come: Examining the Adoption and Use of Assistive Technologies for Informal Family Caregivers." In Advances in Usability, User Experience and Assistive Technology, 824–36. Cham: Springer International Publishing, 2018. http://dx.doi.org/10.1007/978-3-319-94947-5_81.

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Rogoz, Mădălina, and Martina Sekulova. "Labour Mobility from Eastern European Welfare States: Zooming in on Romania and Slovakia." In IMISCOE Research Series, 105–21. Cham: Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-67615-5_7.

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AbstractIn the last two decades, care deficits in Western Europe have been fuelled by demographic and social transformations, such as population ageing, changes in household structures, welfare programme reforms and an altogether lesser involvement of the state in care provision. These care deficits, particularly in high-income countries, have been addressed through migrant labour which, in turn, contributes to increasing care needs in the migrants’ sending countries. Through the example of Romanian and Slovak caregivers working in 2- and 4-week shifts in Austria, this chapter explores the linkages between care workers’ strategies to address the care deficits in their families, the features of relevant welfare provisions in their respective countries of origin and the workers’ mobility patterns. The chapter argues that existing (limited) care needs in their respective families allow carers to engage in transnational work, while extensive care needs at home are a hindrance for working abroad. In other words, there seems to be a tipping point in the care needs of workers’ families, which results in care workers no longer wanting to work abroad but needing to remain in their countries of origin and care for family members instead. Furthermore, the chapter argues that labour mobility patterns are also influenced by the ‘familialistic’ orientation of relevant welfare provisions in sending countries. As limited formal services put pressure on families to continue providing care informally, institutional frameworks for childcare and care for the elderly also influence care workers’ mobility strategies.
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Kent, Erin E., Margaret L. Longacre, Wen-Ying Sylvia Chou, and Michelle A. Mollica. "Who Are Informal Cancer Caregivers?" In Cancer Caregivers, edited by Allison J. Applebaum, 3–19. Oxford University Press, 2019. http://dx.doi.org/10.1093/med/9780190868567.003.0001.

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Informal cancer caregivers are family members, partners, or friends who provide care that is typically uncompensated, at home, and often intensive for individuals with cancer. Estimates vary, but approximately 2 to 6 million American adults are currently serving as a caregiver for an adult with cancer. Most adult cancer caregivers are female, and the median age of caregivers is 52. The growth in prevalence of cancer and move to more outpatient care has placed an increasing burden on informal caregivers. This chapter reviews the prevalence, characteristics, tasks, and impact of caregiving on both caregivers and patients, with implications and future directions for research, practice, and policy.
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Jacobs, Jamie M., Lara Traeger, Emily A. Walsh, and Joseph A. Greer. "Cognitive Behavioral Therapy for Informal Cancer Caregivers." In Cancer Caregivers, edited by Allison J. Applebaum, 149–63. Oxford University Press, 2019. http://dx.doi.org/10.1093/med/9780190868567.003.0009.

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As cancer treatment shifts progressively to the outpatient setting, informal caregivers, including family and friends, play an increasingly central role in ensuring optimal ongoing care of these patients. Cancer caregivers may provide a range of emotional, instrumental, and informational support, including handling complex treatment schedules, managing side effects, juggling household chores and transportation, communicating with the healthcare team and friends and family, and coping with the uncertainty of their loved one’s prognosis. Cancer caregivers may become overwhelmed and burdened by these tasks, receiving minimal support and guidance related to managing distress and maintaining their own quality of life while caring for a loved one. Cognitive behavioral therapy is evidence- and skills-based therapy efficacious for patients with cancer in managing anxiety and depression and improving quality of life. This chapter reviews the application of and evidence for cognitive behavioral therapy for addressing psychosocial distress and burden in informal cancer caregivers.
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Wolf, Debra, and Cristina Pejoves Gorman. "Important Legal Concerns Faced by Informal Cancer Caregivers." In Cancer Caregivers, edited by Allison J. Applebaum, 307–23. Oxford University Press, 2019. http://dx.doi.org/10.1093/med/9780190868567.003.0018.

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This chapter examines various laws that may affect cancer caregivers. Informal caregivers, whether family or friends, often face emotional and financial challenges when taking on caregiving responsibilities for their loved ones. Common concerns may include job security and the financial implications of time off, as well as family conflicts regarding caregiving decisions. As a result, caregivers may experience an increase in stress and obstacles that can interfere with their ability to carry out caregiving responsibilities. This chapter reviews the laws that may be of interest to informal cancer caregivers, including legal protections for caregivers who may need to take time off from work and possible avenues for compensation. The chapter also explores the role that caregivers play in healthcare and other decision-making and the importance of advance directives for cancer patients.
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Wittenberg, Elaine, Joy V. Goldsmith, Sandra L. Ragan, and Terri Ann Parnell. "The Family Caregiving Imperative." In Caring for the Family Caregiver, 1–31. Oxford University Press, 2020. http://dx.doi.org/10.1093/med/9780190055233.003.0001.

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The majority of adults will develop or contract one or more chronic illnesses in the latter third of their lives. They will live protractedly with illness for years before death. About one in six Americans (adult aged, as there are no reliable numbers on caregivers under the age of 18) provide an estimated 37 billion hours of unpaid care to family or friends. This population of caregivers shoulders a heavy load with little support, putting their own health in peril. A description of the caregiving population, their tasks, and financial costs are detailed. The four most common chronic illnesses of dementia, cancer, diabetes, and heart disease are specifically examined from a caregiving perspective. An argument is presented that situates the patient and caregiver as one unit of care, prioritizing family communication as a key part of health communication and decision-making. The summative force of perceived, experienced, and anticipated communication for the caregiver with patient, providers, family, and system is described. Caregiver effectiveness and well-being can be improved through better communication and improved health literacy, which also improves patient outcomes. The integration of family illness narratives that situate the informal caregiver’s experiences are presented. Four featured caregiver stories are detailed and set the stage for a typology of caregivers, which will unfold across the volume.
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Conference papers on the topic "Informal family caregivers"

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Cendrasilvinia, Herose, The Maria Meiwati Widagdo, and Widya Christine Manus. "Burden and Quality of Life of Dependent Elderly Caregivers in Pakuncen Village Yogyakarta." In The 7th International Conference on Public Health 2020. Masters Program in Public Health, Universitas Sebelas Maret, 2020. http://dx.doi.org/10.26911/the7thicph.01.08.

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Background: Elderly people face health problems associated with reduced health and increased disability. Dependent elderly on caregivers who cause a burden affecting the quality of life of caregivers. The aim of this study was to analyze the correlation between the burden and quality of life among dependent elderly caregivers. Subjects and Method: A cross-sectional study was carried out in Pakuncen Village, Yogyakarta. The study subjects were 30 informal caregivers who cared for their family member aged ≥ 60 years with moderate dependence. Instruments used to screen dependent elderly included Activities of Daily Living (ADL) and Instrument Activities of Daily Living (IADL) to measure level of independence, MMSE and AD-8 to assess cognitive function of elderly. Caregivers aged ≥ 60 years underwent MMSE and those with scores <24 was excluded. Caregivers’ burden ware measured using The Zarit Burden Interview (ZBI) and Caregiver Reaction Assessment (CRA). Measurements of quality of life among caregivers was conducted by WHOQOL-BREF. Data were analyzed using Spearman-rank correlation. Results: Out of 30 caregivers, 24 were female and 6 were male with an average age of 49 years. Most respondents had light to moderate burden (Mean= 34.27; SD=18.94). Caregivers’ quality of life were low (<60) in psychological (Mean= 58.17; SD= 12.31), social relation (Mean= 59.77; SD= 9.04), and the environment domains (Mean= 51.90; SD= 10.00). Caregivers’ quality of life was high (≥60) in physical health domain (Mean= 63.30; SD=12.83). There were negative correlations between caregiver burden (ZBI and CRA) and the quality life of caregivers (WHOQOL-BREF). Conclusion: In Yogyakarta, the burden of caregivers (ZBI and CRA) and the quality of caregivers’ lives (WHOQOL-BREF) are negatively correlated. Keywords: caregiver, burden, quality of life, dependent, elderly Correspondence: Herose Cendrasilvinia. Faculty of Medicine, Universitas Duta Wacana Christian, Yogyakarta. Jl. Dr. Wahidin Sudirohusodo 5-25 Yogyakarta, 55224. Email: herosecendrasilvinia@gmail.com. Mobile: 081226466770. DOI: https://doi.org/10.26911/the7thicph.01.08
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Herdaetha, Adriesti, Aris Sudiyanto, RB Sumanto, Endang Sutisna Suleman, and Wijaya Kusuma. "Social Capital Phenomenology Study among People Who Treat A Mental Disorder Caregivers." In The 7th International Conference on Public Health 2020. Masters Program in Public Health, Universitas Sebelas Maret, 2020. http://dx.doi.org/10.26911/the7thicph.01.40.

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ABSTRACT Background: It’s a stressor to have a family of mental illnesses. Financial, social, psychological, and physical burdens are created by looking after people with mental disorders. For the patient, the family is the informal caregiver. It is important to discuss, with a great burden, how social capital can be developed and how the role of social capital is played in treating people with mental disorders. The research was carried out on Javanese individuals who have a cultural structure that prioritizes the importance of peace in collective life. Not only the nuclear family, but also the extended family and the larger community are active in the life of Javanese society. This study aimed to describe the social capital phenomenology study among people who treat mental disorder caregivers. Subjects and Method: This was a qualitative study using a phenomenological study approach. The study was carried out in Surakarta City, Central Java, in September and October 2019. These study subjects were people who were carers for people with mental disorders. The sample was taken using purposive sampling technique. Data were collected using in-depth interviews and observation. Qualitative data analysis was obtained by means of data reduction, data presentation, and drawing conclusions and verification. Data reliability was carried out using NVivo 12 software. Data validity was done by matching the results of interviews with observations, as well as multiple interviews. Results: Data was collected from four respondents with different demographic backgrounds. Six themes were obtained, namely 1) trust in God, government, family, and neighbors; 2) The role of family and neighbors in seeking help; 3) The role of family and neighbors in caring for patients; 4) building social networks; 5) Participation in society; and 6) Social capital is dynamic. Conclusion: The respondents are found to have the same social cognitive capital, but different social structural capital. The level of education, the economic level, self-esteem, and the behavior of people with mental disorders are influenced by structural social capital. Family and neighbors can have a positive or negative role in looking after people with mental disorders. They also play a role in the decision to seek assistance for individuals with mental disorders. Keywords: mental disorders, carers, social capital Correspondence: Adriesti Herdaetha. Doctoral Program of Community Development / Empowerment, Universitas Sebelas Maret. Jl. Ir. Sutami 36A, Surakarta, Central Java. Email: aherdaetha@gmail.com. Mobile: +628122582995 DOI: https://doi.org/10.26911/the7thicph.01.40
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