Understanding Caregiver Experiences: Enhancing Services for Caregivers of Individuals With Intellectual Disability Using Personas

ABSTRACT This research addresses the existing gap in literature concerning the utilization of caregiver personas as a pivotal mediator in tailoring caregiver services and fostering a profound understanding of caregiver experiences. Through their personas, caregivers' struggles attain ontological subjectivity, thereby shaping the services they actively seek. Consequently, comprehending caregiver personas becomes indispensable in directing services towards the root causes of their challenges, rather than merely addressing symptoms resulting from their subjective assessments. The caregiver experience is intrinsically linked to their environmental context, where socioeconomic determinants influence the prioritisation and relevance of the services they require. This study investigates the intricate relationship between caregiver personas, the challenges encountered by caregivers of individuals with intellectual disabilities, and the services they actively pursue. Adopting the WeCare toolkit, we engaged 15 participants, representing three primary caregiver personas (Balanced, Conscious, and Self‐Reliant), who took part in caregiver workshops. Subsequent individual interviews were conducted, with the resulting transcripts undergoing thematic analysis and categorisation based on shared themes. The analysis reveals that certain challenges weigh more heavily on specific caregiver personas, exemplified by self‐reliant caregivers grappling with an overwhelming sense of involvement in their caregiving roles. Additionally, it was identified that certain challenges remain ubiquitous across all caregivers, irrespective of their personas, such as the shared desire for the independence of their child or ward with intellectual disabilities. Considering these findings, we advocate for further research to delve deeper into the distinctive impacts of caregiver personas on their caregiving experiences. Such exploration will serve to enhance the precision and effectiveness of caregiver support services, ensuring that they are aptly tailored to individual caregiver personas and their specific needs.