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

Author:

Bijnsdorp Femmy M.,Pasman H. Roeline W.,Boot Cécile R. L.,van Hooft Susanne M.,van Staa AnneLoes,Francke Anneke L.

Abstract

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.

Funder

ZonMw

Publisher

Springer Science and Business Media LLC

Subject

General Medicine

Reference47 articles.

1. de Klerk M, de Boer A, Plaisier I, Schyns P. Voor elkaar? Stand van de informele hulp in 2016. Den Haag: Sociaal en Cultureel Planbureau; 2017.

2. Visser G. Mantelzorg in de palliatief terminale fase. Utrecht: Expertisecentrum Mantelzorg; 2008.

3. De Korte-Verhoef MC, Pasman HRW, Schweitzer BP, Francke AL, Onwuteaka-Philipsen BD, Deliens L. Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs. BMC Palliat Care. 2014;13(16):1–9.

4. Rumpold T, Schur S, Amering M, Kirchheiner K, Masel E, Watzke H, et al. Informal caregivers of advanced-stage cancer patients: every second is at risk for psychiatric morbidity. Support Care Cancer. 2016;24(5):1975–82.

5. Sklenarova H, Krümpelmann A, Haun MW, Friederich HC, Huber J, Thomas M, et al. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer. 2015;121(9):1513–9.

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