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Care Recipient Concerns About Being a Burden and Unmet Needs for Care.

ABSTRACT: Background:Disabled older adults' needs for help with daily activities sometimes go unmet with potentially long-term negative consequences for health and well-being. Objectives:To examine the relationship between care recipient unmet needs and (1) concerns about being a burden; (2) perceptions of caregiver burden; and (3) and caregiver self-reports of burden in community-dwelling care recipient-caregiver dyads. Research Design and Methods:Telephone surveys with 196 linked caregiver-care recipient dyads from the 2017 Pittsburgh Regional Caregiver Survey. Of 376 caregivers who gave initial permission to contact the recipient (February-July), 262 caregivers were recontacted and gave permission to attempt a care recipient survey (September-October; n = 196 completed; 74.8% response rate). In addition to the burden measures, we controlled for several covariates, including disability level, receipt of paid help, and care recipient and caregiver sociodemographics. Results:Slightly more than one fourth (27.2%) of care recipients were "very concerned" about being a burden, and 43.6% were "somewhat concerned." Care recipient concerns about being a burden (exp(B) = 1.71, 95% confidence interval [CI] exp(B) [1.15, 2.54]); and caregiver self-reported burden (exp(B) = 1.82, 95% CI exp(B) [1.17, 2.85]) were independent predictors of more care recipient unmet needs. Recipient perceptions of caregiver burden were not independently predictive. Care recipients with higher disability levels, those without paid help, and those whose caregiver was not a spouse/child also reported more unmet needs. The impact of burden on unmet needs was stronger for instrumental activities of daily living/mobility needs than for activities of daily living needs. Discussion and Implications:Potential interventions to reduce unmet needs should take a dyadic approach, focusing on reducing both care recipient perceptions of being a burden and caregiver experienced burden.

SUBMITTER: Nieuwenhuis AV

PROVIDER: S-EPMC6186011 | biostudies-literature | 2018 Sep

REPOSITORIES: biostudies-literature

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Care Recipient Concerns About Being a Burden and Unmet Needs for Care.

Nieuwenhuis Anna Vazeou AV Beach Scott R SR Schulz Richard R

Innovation in aging 20180901 3

<h4>Background</h4>Disabled older adults' needs for help with daily activities sometimes go unmet with potentially long-term negative consequences for health and well-being.<h4>Objectives</h4>To examine the relationship between care recipient unmet needs and (1) concerns about being a burden; (2) perceptions of caregiver burden; and (3) and caregiver self-reports of burden in community-dwelling care recipient-caregiver dyads.<h4>Research design and methods</h4>Telephone surveys with 196 linked c ...[more]

PMID: 30480145

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Project description:Background and objectivesDespite growing diversity among the aging population and extensive previous research on racial/ethnic minority caregivers, little research has been conducted on the potentially unique experiences and outcomes of informal caregivers of foreign-born care recipients. Using nationally representative data and the Stress Process Model, the current study examined the differences in caregiver outcomes (care burden, psychological well-being, and self-rated health) by care recipient nativity status (U.S.-born vs. foreign-born) and the extent to which caregiver outcomes vary by care recipient nativity status and caregiver race/ethnicity (non-Hispanic white, non-Hispanic black, Hispanic, and Others).Research design and methodsThe current study used Round 5 of the National Health and Aging Trends Study and the National Study of Caregiving (N = 1,436). We conducted ordinary least squares regression to analyze the differences in caregiver's outcomes by care recipient nativity status and caregiver race/ethnicity and to investigate the impacts of the inclusion of caregiving factors (background factors, primary stressors, secondary stressors, and resources).ResultsRegression analyses showed that only care burden significantly varied by care recipient nativity status after controlling for covariates. Caregivers of foreign-born care recipients reported a higher burden. However, when interactions of care recipient nativity status × caregiver race/ethnicity were introduced, non-Hispanic black and Hispanic caregivers of foreign-born care recipients were more likely to report better psychological well-being and self-rated health compared to their counterparts. Across caregiver groups, better caregiver-care recipient relationship quality and less caregiver chronic conditions were associated with less burden and better caregiver psychological well-being and self-rated health.Discussion and implicationsCare recipient nativity status and caregiver race/ethnicity may have complex effects on caregiving experiences. Given the observed significant interaction effects for caregiver psychological well-being and self-rated health, cultural factors may affect the extent to which these caregivers appraise their caregiving. Future research should delve into the appropriate ways to assess care stress as well as resilience among each caregiver group. Our results indicate the need for research, education, and practice that assess cultural and within-group differences among caregivers and inform needed changes to structural barriers.

Project description:Background/objectivesMedicare-certified home health agencies are required to offer family caregiver training, but little is known regarding the potential impact of this training on outcomes during home health care. We estimate the proportion of family caregivers assisting Medicare home health patients who have unmet training needs and examine whether these unmet training needs are associated with older adults' risk of acute care utilization during home health care.DesignObservational, nationally representative cohort study.SettingLinked National Health and Aging Trends Study, Outcome and Assessment Information Set (OASIS), Medicare Provider of Services file, and Medicare claims data from 2011 to 2016.ParticipantsThousand two hundred seventeen (weighted n = 5,870,905) community-living Medicare beneficiaries who received home health care between 2011 and 2016.MeasurementsFamily caregivers' unmet training needs measured from OASIS and Medicare claims; home health patients' acute care utilization (including emergency department use and hospitalization) measured from OASIS.ResultsRates of unmet need for training varied by activity, from 8.2% of family caregivers assisting with household chores to 16.0% assisting with self-care tasks. After controlling for older adult and home health provider characteristics, older adults whose family caregivers had an unmet need for training with any caregiving activity were twice as likely to incur acute care utilization during their home health episode (adjusted odds ratio [aOR]: 2.01, 95% confidence interval [CI]: 1.20-3.38). This relationship held across specific caregiving activities including household chores (aOR: 1.98; 95% CI: 1.13-3.46), medication management (aOR: 2.50; 95% CI: 1.46-4.26), patient supervision (aOR: 2.92; 95% CI: 1.36-6.24), and self-care tasks (aOR: 3.11; 95% CI: 1.62-6.00).Conclusions and relevanceUnmet training needs among family caregivers are associated with greater likelihood of acute care utilization among Medicare beneficiaries receiving home health care. Identifying and addressing family caregivers' training needs may reduce older adults' risk of acute care utilization during home health care.

Project description:Background: The Asia Pacific Society for Immunodeficiencies (APSID) conducted nine primary immunodeficiency (PID) Schools in 5 years since inauguration to provide PID care training for early career physicians in Asia Pacific, a region with divergent needs in PID resources and training. Objective: To identify differences in PID patient care resource and training needs across Asia Pacific and propose a corresponding action plan. Methods: The Human Development Index (HDI) indicates the degree of socio-economic development in each country/region. Information related to investigations and learning issues were extracted from the abstracts and personal statements from all Schools and mapped onto resource and training needs. Correlations between HDI and country/region-specific parameters were tested by two-tailed Pearson correlation. Results: A total of 427 abstracts were received in nine Schools between 2015 and 2020, predominantly on immunodeficiencies affecting cellular and humoral immunity. Genetic confirmation was described in 61.8% of abstracts, and its absence negatively correlated with HDI (r = -0.696, p = 0.004). Essential immunologic and genetic tests were not available in 25.4 and 29.5% of abstracts, respectively, and their absence negatively correlated with HDI (r = -0.788, p < 0.001; r = -0.739, p = 0.002). HDI positively correlated with average testing level (r = 0.742, p = 0.002). Cases from medium-HDI countries/regions focused on learning how to investigate a patient for PIDs in cases of severe or atypical infections, whereas those from very-high-HDI countries/regions, from which most faculty members originated, listed hematopoietic stem cell transplantation and gene therapy, newborn screening, and research as learning issues more frequently. Conclusion: There are unique HDI-related PID resource and training needs in each country/region. APSID proposes HDI group-specific strategies to improve PID care and education in her member countries/regions. Further quantitative analysis of needs in PID care in Asia Pacific is needed for lobbying governments to increase their support for PID care and research.

Dataset Information

Care Recipient Concerns About Being a Burden and Unmet Needs for Care.

Publications

Care Recipient Concerns About Being a Burden and Unmet Needs for Care.

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