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Abstract

Caregiver burden (CB) is an under-researched topic among familial caregivers (parents, siblings, aunts, uncles and grandparents) supporting someone with Prader-Willi Syndrome (PWS). CB is defined as the physical and mental toll resulting from caring for someone with additional needs, which has not yet been explored in PWS familial caregivers. PWS causes hyperphagia (insatiable hunger) and violent behaviours that can be hard to manage. Research demonstrates primary caregivers have a decreased quality of life and increased mental health (MH) problems, with quantitative literature highlighting the risk of CB. This study aimed to qualitatively highlight the experiences of CB in familial caregivers of someone with PWS. Semi-structured online focus group interviews were conducted on 17 participants who were a parent, grandparent, aunt or uncle to someone with PWS recruited from PWS Facebook support groups. A thematic analysis was conducted, utilising a semantic and inductive approach. Three key themes emerged: `The diagnostic journey', `the impact of caregiver burden', and `managing the inner and outer social world'. These themes emphasise the profound impact of CB on the family unit. Findings revealed the domains in which CB is manifested or maintained, which can inform interventions based on the rich experiences collected to support caregivers. Future research should explore the impact on siblings and examine the highlighted themes in more depth.

Creative Commons License

Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.

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