Dataset Information

Informal Caregiving in a Medically Underserved Community: Challenges, Construction of Meaning, and the Caregiver-Recipient Dyad.

ABSTRACT: Little is known about informal caregivers' challenges in medically underserved communities. This qualitative study explores their perceptions/experiences of caregiving in a medically underserved community in Midwest United States. Two focus groups (n?=?12) were conducted and themes were extracted and analyzed. Theme 1 included perceived barriers/unmet needs; most prevalent of which were lack of informational resources and support groups. A second unsolicited and unanticipated theme highlighted how caregivers constructed meaning through reappraising challenges to create enriching experiences for themselves, reinforcing their evolving dyadic relationship with care-recipient. Challenging and enriching aspects of caregiving coexisted and were rooted in caregiver-care-recipient dyad. Caregivers used meaning-making as a coping strategy for challenges. Prior research corroborates caregivers' challenges and meaning-making; this study contributes by delineating how both become interrelated. Policy makers can (a) alleviate challenges by increasing informational resources and support groups and (b) provide training to optimize caregivers' meaning-making, thus enhancing their positive experiences.

SUBMITTER: Gorawara-Bhat R

PROVIDER: S-EPMC7774370 | biostudies-literature | 2019 Jan-Dec

REPOSITORIES: biostudies-literature

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Informal Caregiving in a Medically Underserved Community: Challenges, Construction of Meaning, and the Caregiver-Recipient Dyad.

Gorawara-Bhat Rita R Graupner Jeffrey J Molony Jason J Thompson Katherine K

SAGE open nursing 20190101

Little is known about informal caregivers' challenges in medically underserved communities. This qualitative study explores their perceptions/experiences of caregiving in a medically underserved community in Midwest United States. Two focus groups (<i>n</i> = 12) were conducted and themes were extracted and analyzed. Theme 1 included perceived barriers/unmet needs; most prevalent of which were lack of informational resources and support groups. A second unsolicited and unanticipated theme highli ...[more]

PMID: 33415239

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Project description:BackgroundCaregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time.MethodsOur data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research.ResultsThe framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden) and care recipient physical and health care use outcomes.ConclusionsBased on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient outcomes, including considering whether expanding to economic status and health care use of the caregiver can be accommodated, to ease subsequent economic evaluations of caregiving. Third, intervention studies should measure a common set of outcomes to facilitate cross-time and cross-study comparisons of effectiveness.

Project description:BackgroundThe caregiving scholarship widely acknowledges informal caregivers' contributions to maintaining older adults' health and well-being. However, informal caregivers encounter economic, physical, social, financial and psychological challenges when caring for older adults. The caregiving literature has shown variations in caregiving intensity and motivation between rural and urban informal caregivers of older adults. This situation is likely to result in rural-urban disparities in caregiver burden. However, the literature on predictors of caregiver burden is more focused on demographic, socio-economic, caregiving and health-related factors with very little attention to geographical dynamics. For this reason, the effects of demographic, socio-economic, caregiving, and health-related factors on the variations in caregiver burden between rural and urban informal caregivers of older adults are yet to be known in the sub-Saharan African context, including Ghana. Notably, the impact of geographical location on caregiver burden is mainly missing in the informal caregiving literature in Ghana. Situated within the stress process model, we determine the association between geographical location and caregiver burden among informal caregivers of older adults in Ghana.MethodsThis study employed data from a large cross-sectional survey on informal caregiving, health, and healthcare among caregivers of older adults aged 50 years or above (N = 1,853) in Ghana. We selected the World Health Organization Impact of Caregiving Scale to measure caregiver burden. Generalized multivariable linear regression models were employed to determine the association between geographical location and caregiver burden among informal caregivers of older adults. We reported beta values and standard errors with significance levels of 0.05 or less.ResultsThe results showed that rural informal caregivers of older adults significantly have a decreased caregiver burden compared to urban informal caregivers (β = -1.64; SE = 0.41). Also, participants across all the self-rated health categories (poor/very poor: β = 12.63; SE = 1.65; fair: β = 9.56; SE = 1.07; good: β = 11.00; SE = 0.61, very good: β = 7.03; SE = 0.49) have a significantly increased caregiver burden for the full sample and for both rural (poor/very poor: β = 13.88; SE = 2.4; fair: β = 6.11; SE = 1.62; good: β = 9.97; SE = 0.96, very good: β = 6.06; SE = 0.71) and urban (poor/very poor: β = 11.86; SE = 2.25; fair: β = 12.33; SE = 1.42; good: β = 11.80; SE = 0.79, very good: β = 7.90; SE = 0.67) participants. This study further revealed that participants with no financial support needs reported a decreased caregiver burden compared to those with financial support needs for the full sample (β = -2.92, p-value < 0.01) and for both rural (β = -3.20; p-value < 0.01) and urban (β =-2.70; p-value < 0.01) participants.ConclusionThe findings from this study underscore geographical location differences in caregiver burden among informal caregivers of older adults in Ghana. Given these findings, the need to consider geographical location variations in providing welfare and health support programs to lessen caregiver burden among informal caregivers of older adults is welcomed. In line with the stress process model, such welfare and health programs should consider background, context, and stressor factors that contribute to variations in caregiver burden between rural and urban informal caregivers of older adults in Ghana and other sub-Saharan African countries.

Dataset Information

Informal Caregiving in a Medically Underserved Community: Challenges, Construction of Meaning, and the Caregiver-Recipient Dyad.

Publications

Informal Caregiving in a Medically Underserved Community: Challenges, Construction of Meaning, and the Caregiver-Recipient Dyad.

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