Parent/Caregiver Perspectives on the Healthcare Decision‐Making Involvement of Young People With Intellectual Disability: A Qualitative Study

Vollständiger Abstract

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ABSTRACT Background Young people with intellectual disability often have complex healthcare needs. Parent/caregivers can enhance their child's involvement in healthcare decision‐making to improve treatment adherence and health outcomes. Healthcare decision‐making is embedded within health literacy skillsets, and for people with intellectual disability additional time and assistance are needed to ensure preferences are included. This study aims to explore parent/caregiver perspectives on the different ways that young people with intellectual disability participate in healthcare decision‐making and factors that influence involvement to inform future support resources. Methods Fifty‐three interviews were conducted with parent/caregivers of 26 females and 27 males with intellectual disability aged 10–25 years. Interviews took place online and were audio‐recorded and transcribed verbatim after informed consent was provided. Interviews explored decision‐making involvement at home and in healthcare settings. A conventional content analysis was conducted using NVivo. Results The findings are organised into three overarching categories including the primary finding of the ‘Ladder of decision‐making involvement’, which describes the different levels of participation in the decision‐making process from active to passive, as described by parent/caregivers. Secondary findings include the ‘Facilitators and barriers of decision‐making involvement’, which centre on five key areas (information, opportunities and experiences, communication, relationships, accommodations and support) and ‘Parent/caregiver influences and experiences’, which include reflections on the value (in terms of the young person's rights and agency), challenges and contextuality of decision‐making. Some parent/caregivers did not consider it possible to involve their child in healthcare decision‐making due to a perceived lack of capacity. Conclusions This research makes an important contribution to the literature by mapping parent/caregiver perspectives on the scope of involvement and outlining key factors and influences that shape involvement opportunities, skills and experiences. Findings can inform the resources that support parent/caregivers to develop and assist decision‐making skills with their child across levels of involvement.