Dataset Information

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver' support needs.

ABSTRACT:

Background

Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home.

Methods

A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included.

Results

Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving.

Conclusions

Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support.

SUBMITTER: Bijnsdorp FM

PROVIDER: S-EPMC7175554 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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Publications

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver' support needs.

Bijnsdorp Femmy M FM Pasman H Roeline W HRW Boot Cécile R L CRL van Hooft Susanne M SM van Staa AnneLoes A Francke Anneke L AL

BMC palliative care 20200421 1

<h4>Background</h4>Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home.<h4>Methods</h4>A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences wi ...[more]

PMID: 32316948

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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.

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Dataset Information

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver' support needs.

Background

Methods

Results

Conclusions

Publications

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver' support needs.

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