The Experience of Caregivers Supporting Adults with Intellectual Disabilities During Hospitalisation: A Qualitative Study

Fuller, Emma
Donkin, Liesje
Verhoeven, Marleen
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Bachelor of Health Science (Honours)
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Auckland University of Technology

This study aimed to explore the lived experiences of caregivers supporting adults with intellectual disabilities (ID) during hospitalisation within Aotearoa.

Whilst there has been research that has examined the hospitalisation experiences of caregivers supporting adults with ID internationally, there has been little research undertaken in Aotearoa within this context. Identifying caregivers’ experiences of whether caregivers have been adequately supported during hospital stays supporting their adult with ID, and establishing what worked well and what did not work well, is a crucial element to understanding whether the caregivers were overwhelmed or had insufficient support at any point of the hospital stay with their adult with ID in Aotearoa.

This study utilises a qualitative methodology as it enabled lived experiences to be shared, which will help to determine what services within the Aotearoa hospital system are necessary to better support this population in the future. Caregivers of six adults with intellectual disabilities were interviewed using semi-structured interviews. Transcripts from these interviews and thematic analysis have been used to identify key themes.

The findings discovered the increasing reliance placed on caregivers of adults with ID whilst in hospital. These were highlighted through the interdependence within the themes developed in this research; advocacy, environment, lack of support, lack of awareness, interpersonal care, informed consent, communication, health experience and sense of abandonment.

This study broadens the body of knowledge through understanding the challenges caregivers face. Caregivers involved in this study were predominately family caregivers, therefore non-qualified, supporting findings that they are involved in processes beyond their personal competencies. The findings highlight that caregivers experienced insufficient support whilst supporting their adult with ID when in hospital in Aotearoa. This study can be used to show awareness of the challenges that caregivers face in Aotearoa, with further research looking into how these challenges can be addressed. Future research needs to consider the use of artificial intelligence and technology advances that provide assistance with advocating, communication, and supporting ID adults, thus relieving their caregivers of some of these burdens. This is expected to provide positive outcomes.

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