Exploring Caregiver Burden in Parkinson’s Disease: A Qualitative Investigation of the Differing Experiences of Parkinson’s Carers Who Experience Lower and Higher Burden

Heywood, LE and Atherton, K ORCID: 0000-0002-1858-2841 (2026) Exploring Caregiver Burden in Parkinson’s Disease: A Qualitative Investigation of the Differing Experiences of Parkinson’s Carers Who Experience Lower and Higher Burden. Perspectives in Psychiatric Care, 2026 (1). ISSN 0031-5990

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Abstract

Objectives
This study aimed to explore levels of caregiver burden in unpaid carers of people with Parkinson’s disease and explore the factors which contribute to and ease burden, with a focus on the differences of experience between higher- and lower-burdened carers.

Methods
Opportunity sampling was used to recruit six participants, who were organised into lower and higher burden groups (three lower burden and three higher burden). Individual semistructured interviews with carers focused on caregiving experiences. Interviews were analysed using reflexive thematic analysis, paying particular attention to the groups of ‘lower’ or ‘higher’ burden, to determine whether or not themes were consistent within and across groups.

Results
Participants had a mean score of mild–moderate burden. From the interviews, three themes were identified: ‘Everything’s a fight or feeling supported’, ‘Everything you don’t know’ and ‘Everything for the family’.

Conclusion
The study supported previous research in establishing some of the key themes associated with caregiver burden, and how these present differently across differing levels of that burden. The findings of this, and similar research, should now be used to tailor support to caregivers, ensuring help is provided where it is most needed, to limit the risk of caregiver burden and associated health complications.

Item Type:	Article
Uncontrolled Keywords:	4203 Health Services and Systems; 42 Health Sciences; Neurosciences; Burden of Illness; Neurodegenerative; Caregiving Research; Parkinson's Disease; Clinical Research; Brain Disorders; Aging; Neurological; 3 Good Health and Well Being; 1110 Nursing; Nursing; 4205 Nursing
Subjects:	B Philosophy. Psychology. Religion > BF Psychology H Social Sciences > HQ The family. Marriage. Woman
Divisions:	Psychology (from Sep 2019)
Publisher:	Wiley
Date of acceptance:	15 September 2026
Date of first compliant Open Access:	29 October 2026
Date Deposited:	29 Oct 2026 14:13
Last Modified:	29 Oct 2026 14:13
DOI or ID number:	10.1155/ppc/8753891
Editors:	Sampaio, F
URI:	https://researchonline.ljmu.ac.uk/id/eprint/29765

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