Exploring Caregiver Burden in Parkinson’s Disease: A Qualitative Investigation of the Differing Experiences of Parkinson’s Carers Who Experience Lower and Higher Burden
Lauren E. Heywood, Kate AthertonObjectives
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.