Informal Hospice Caregiving: The Toll on Quality of Life.
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ABSTRACT:
SUBMITTER: Wilder H
PROVIDER: S-EPMC2749275 | biostudies-literature | 2008 Jan
REPOSITORIES: biostudies-literature
Publications
Informal Hospice Caregiving: The Toll on Quality of Life.
Wilder Hm H Parker Oliver D D Demiris G G Washington K K
Journal of social work in end-of-life & palliative care 20080101 4
Similar Datasets
Project description:PurposeThe purpose of this study was to describe the unique characteristics of informal hospice cancer caregiving.MethodsResearchers conducted a secondary analysis of data drawn from a randomized clinical trial of an informal hospice caregiving intervention (N = 348). Demographic characteristics and measures of the informal caregiving experience of hospice patients and their informal caregivers were compared based on the patient's diagnosis using chi-square tests for association of categorical variables and t tests for continuous variables.ResultsInformal caregivers of cancer patients differed from their non-cancer counterparts in a number of respects including patient age, caregiver age, patient residence, relationship between patient and caregiver, amount and duration of care provided, likelihood to incur out-of-pocket expenses related to patient care, caregiver problem-solving style, and impact on caregiver daily schedule. There were no statistically significant differences between cancer and non-cancer caregivers in terms of gender, race, employment status, anxiety, and quality of life.ConclusionsWhile cancer and non-cancer caregivers are similar in many respects, a number of unique features characterize the informal hospice cancer caregiving experience. Attention to these unique features will allow hospice providers to tailor supportive care interventions to better address cancer caregivers' needs.
| S-EPMC4449794 | biostudies-literature
Project description:BackgroundResearchers have identified important gender differences in the experience of caring for a family member or friend living with advanced disease; however, trends suggest that these differences may be diminishing over time in response to changing gender roles. In addition, while many studies have found caregiving experiences and outcomes to be poorer among female caregivers, noteworthy exceptions exist.ObjectiveThe primary aim of this exploratory study was to determine how, if at all, current day caregiving at end of life varies by gender.MethodsWe conducted a secondary analysis of data from a multisite randomized controlled trial of a family caregiving intervention performed between 2010 and 2014. We compared female and male hospice family caregivers on baseline variables using χ(2) tests for association of categorical variables and t-tests for continuous variables. Our sample included 289 family caregivers of individuals receiving services from one of two hospice agencies located in the northwestern United States. Demographic data and other categorical variables of interest were provided via caregiver self-report using an instrument created specifically for this study. Reaction to caregiving and caregiving burden were measured using the Caregiver Reaction Assessment (CRA).ResultsAs it related to caregiving, females had significantly lower self-esteem and more negative impact on their schedule, health, and family support than males. No gender differences were detected with regard to the impact of caregiving on individuals' finances.ConclusionsDespite changing social expectations, pronounced gender differences persist in caregiving at the end of life.
| S-EPMC4677542 | biostudies-literature
Project description:BackgroundCollective caregiving, performed by caregivers working in pairs (informal primary and secondary caregivers working together), is common in the hospice setting. Research suggests that caregiving pairs may experience different caregiver outcomes. However, little is known about how caregiving pairs differ from solo caregivers (informal primary caregivers) on outcome measures.ObjectiveThe goal of this study was to determine whether being in a caregiver pair affected caregiver anxiety and depression and how outcomes changed over time.DesignA mixed model analysis was used.Setting/subjectsHospice caregivers (260 solo caregivers and 44 caregivers in 22 pairs) who participated in a larger, randomized controlled trial completed caregiver measures upon hospice admission and periodically until the death of the patient or hospice decertification.MeasurementsMeasured were caregiver quality of life, social support, anxiety, and depression.ResultsCaregiver pairs had higher anxiety and depression scores than solo caregivers. Emotional, financial, and physical quality of life were associated with decreased depression, whereas only emotional and financial quality of life were correlated with lower levels of anxiety. Social support was associated with lower levels of depression and anxiety.ConclusionsDespite assumptions that social support is positively facilitated vis-a-vis collective caregiving, caregiving pairs may be at higher risk for anxiety and depression. Future research is needed to address why individuals become anxious and/or depressed when working as part of a caregiving pair.
| S-EPMC3887433 | biostudies-literature
Project description:Although the long-term consequences of informal care provision have been well investigated, few studies have examined the trajectories of informal care provision among older people and the socioeconomic, demographic, health, and family characteristics associated with them. We use data from four waves of the English Longitudinal Study of Ageing, with 6561 respondents followed for 6 years (2012/3-2018/9). We used group-based trajectory modelling to group people's provision of care over time into a finite number of distinct trajectories of caregiving. Using multinomial logistic regressions, we then investigated the characteristics associated with these trajectories. Four distinct trajectories of caregiving were identified: "stable intensive", "increasing intensive", "decreasing", and "stable no care". Results suggest that although there are socioeconomic, demographic, and health differences across the trajectories of caregiving (with younger women in good health and poorer socioeconomic status more likely to care intensively throughout), family characteristics are their main drivers. Respondents who live alone, with no children, and no parents alive are more likely to never provide care, whereas those with older parents and who live with adults in poor health are more likely to provide stable intensive care. Also, changes in family characteristics (e.g. death of parents, widowhood, or deterioration of the partner's health) are associated with trajectories representing increases or decreases in caregiving over time. Overall, trajectories of informal caregiving undertaken by older people are varied and these patterns are mostly associated with both the availability and health of family members, suggesting that need factors represent the most immediate reason for caregiving commitments.
| S-EPMC11365911 | biostudies-literature
Project description:Background: People with life-limiting illness are increasingly having more care provided to them by informal caregivers (ICs) such as family members and friends. Although there is a substantial amount of literature surrounding informal caregiving, there is a paucity of research from a hospice palliative care angle. To address this knowledge gap, this scoping review explored the effects of/challenges to informal caregiving at the end of life in Canada. Methods: Scoping review of the literature following Arksey and O'Malley's framework. Key healthcare and social sciences databases alongside the gray literature were searched. Relevant scholarly and gray literature sources from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis employed to summarize findings. Results: Of 2,717 initial search results, 257 distinct full text articles were obtained. Following deduplication and screening, 33 met inclusion criteria. Four major themes were identified: (1) Physical health challenges, (2) Psycho-socio-spiritual health challenges, (3) Financial issues, and (4) Health system issues. Gender of ICs was also found to be an important contributor to the differing effects of providing support. Conclusions: This review raises awareness toward ICs regarding the numerous physical, psycho-socio-spiritual, financial, and health system challenges faced during care for people with life-limiting illness. The knowledge gained will inform and advance future practice, policy, and research. Application to interventions (such as caregiver benefits) will assist to improve informal caregiving experiences and outcomes alongside quality of life. Further research is required to understand these unique experiences and the challenges of minority IC populations.
| S-EPMC9109592 | biostudies-literature
Project description:ObjectivesGlobally, informal caregivers caring for cancer patients meet challenges within their caregiving role, which significantly influence their quality of life. This qualitative systematic review aimed to analyze how cancer caregiving influence the quality of life of informal caregivers and the management strategies of informal caregivers for their role as cancer caregivers.MethodsFollowing the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement, Wanfang database, the China National Knowledge Infrastructure (CNKI), CINAHL, MEDLINE, PubMed, Cochrane Library, PsycARTICLES and PsycINFO, and grey literature in English and Chinese from 1 May 2009 to 31 December 2019 were searched. Quality of included studies was assessed by the Critical Appraisal Skills Programme (2018) Qualitative Checklist and thematic synthesis was conducted.ResultsOf the 8,945 studies identified, 6 studies met the inclusion criteria. One analytical theme relating to the QoL of informal caregivers following cancer caregiving was identified: "challenges of caregiving". In terms of the management strategies to the role of cancer caregivers, two analytical themes were identified: "self-adjustment" and "seeking for formal and informal support".ConclusionsCancer caregiving influences informal caregivers' QoL significantly and informal caregivers develop diverse coping strategies to deal with the difficulties occurred while balancing the relationship between their own lives and caregiving. However, professional and policy support remain inadequate for informal caregivers that require the need for improvement in terms of health care professionals and policymakers.
| S-EPMC8105556 | biostudies-literature
Project description:Background/objectivesHospice care confers well-documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end-of-life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types.DesignProspective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data.SettingContiguous United States.ParticipantsA total of 1,868 NHATS decedents.MeasurementsOutcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self-reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics.ResultsAt the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0-4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life.ConclusionOlder adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness. J Am Geriatr Soc 68:2288-2296, 2020.
| S-EPMC7718293 | biostudies-literature
Project description:BackgroundInformal caregiving is seen as a low-cost substitute for care provided by health care professionals. However, caregiving is known to negatively impact caregivers' health and, subsequently, their health care use and costs. This could potentially offset the caregivers' contributions to the health care system.ObjectiveWe examined the impact of caregiving on costs associated with caregivers' use of publicly funded health care services in Ontario, Canada, in comparison with non-caregivers.MethodsWe included Ontarians who participated in the Canadian Community Health Survey-Healthy Aging Supplement Survey of 2008/09 and linked responses to health care administrative databases. A difference-in-differences design was used to capture differences in caregivers' and non-caregivers' total health care costs 1 and 2 years before and after caregiving start date. Generalized Linear Models were used to model the total health care costs.ResultsThe sample size was 4275 with 1265 caregivers and 3010 non-caregivers. We found that while health care utilization increased over time, it increased by a lesser amount for caregivers than non-caregivers. Adjusted total health care costs for caregivers were 11.32% (SE = 0.05, ρ = 0.02) lower than non-caregivers 2 years into caregiving.ConclusionsOur study reveals a critical gap in policy, practice, and research driven by a lack of routine data collection and caregiver identification. It also highlights the need for additional longitudinal research focusing on caregivers' objective health.
| S-EPMC11812279 | biostudies-literature
Project description:Background and purposeInformal (unpaid) caregiving usually provided by family is important poststroke. We studied whether the prevalence of informal caregiving after stroke differs between Mexican Americans (MAs) and non-Hispanic Whites (NHWs).MethodsBetween October 2014 and December 2018, participants in the BASIC (Brain Attack Surveillance in Corpus Christi) project in Nueces County, Texas, were interviewed 90 days after stroke to determine which activities of daily living they required help with and whether family provided informal caregiving. Ethnic differences between MAs and NHWs were determined by logistic regression. The logistic models were stratified by formal (paid) care status. Odds ratios (95% CIs) are reported with NHW as the referent group. Fisher exact tests were used to assess the association of ethnicity with relationship of caregiver and with individual activities of daily living.ResultsEight hundred thirty-one patients answered the caregiving questions. Of these, 242 (29%) received family caregiving (33% of MAs and 23% of NHWs), and 142 (17%) received paid caregiving (21% of MAs and 10% of NHWs). There were no ethnic differences in stroke severity. In logistic regression analyses, among those without formal, paid care, MAs were more likely to have informal caregiving (odds ratio, 1.75 [95% CI, 1.12-2.73]) adjusted for age, National Institutes of Health Stroke Scale, prestroke modified Rankin Scale, and insurance. No ethnic differences in informal care were found among those who had formal care. There were no differences between ethnic groups in which family members provided the informal care. MAs were more likely to require help compared with NHWs for walking (P<0.0001), bathing (P<0.0001), hygiene (P=0.0012), eating (P=0.0004), dressing (P<0.0001), ambulating (P=0.0304), and toileting (P=0.0003).ConclusionsMAs required more help poststroke than NHWs for assistance with activities of daily living. MAs received more help for activities of daily living through informal, unpaid caregiving than NHWs if they were not also receiving formal, paid care. Efforts to help minority and low-resource populations provide stroke care are needed.
| S-EPMC8608706 | biostudies-literature
Project description:Informal carers report lower evaluative wellbeing than non-carers. In contrast to this literature and our own analysis of evaluative wellbeing, we find carers have a small but higher level of experienced wellbeing than non-carers do. To investigate why, we use decomposition analysis which separates explanatory factors into how time is used and how those uses of time are experienced. We analyze activities and associated experienced wellbeing measured in ten-minute intervals over two days by 4817 adults from the 2014/15 UK Time Use Survey. We use entropy balancing to compare carers with a re-weighted counterfactual non-carer group and then apply Oaxaca-Blinder decomposition. The experienced wellbeing gap of 0.066 is the net result of several substantial competing effects of time use. Carers experienced wellbeing would be higher by 0.188 if they had the same patterns and returns to time use as non-carers which is driven by sleep, time stress and alternative characteristics of time use. However, leisure and non-market activities serve to dampen this increase in experienced wellbeing. Initiatives to improve and assess carer wellbeing should pay close attention to how carers spend their time.
| S-EPMC10092671 | biostudies-literature