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

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.