Parents' perspectives on reasonable adjustments in acute healthcare for people with intellectual disability: A qualitative descriptive study

Abstract

Aim: To describe parents' perspectives on reasonable adjustments in acute healthcare for people with intellectual disability (ID).

Background: People with ID are vulnerable in terms of their health needs and marginalized when accessing and utilizing acute healthcare services. Reasonable adjustments are positive measures that can help alleviate health disparities. However, despite significant research advocating their use, evidence of implementation of reasonable adjustments in acute healthcare practice is limited.

Design: A qualitative descriptive study.

Methods: Qualitative semi-structured interviews were conducted with six parents of children with ID, who had accessed and used acute healthcare services. The interviews were conducted between January and May 2022, audio-recordings were transcribed and thematically analysed.

Results: Parents described limited or no experiences of reasonable adjustments when accessing or utilizing acute healthcare services for their children. The findings are captured in three themes; describing the reality, understanding the impact and signposting the future. The findings highlight a lack of implementation of reasonable adjustments in acute healthcare which negatively impacts the experience of all stakeholders.

Conclusion: There is a pressing need for reasonable adjustments to be implemented at a strategic level across acute healthcare services, so that people with ID and their families can access person-centred acute healthcare when needed.

Impact: The research findings will inform researchers interested in reasonable adjustments and implementation research, and those interested in advocating for the rights of people with ID.

Reporting method: This study adhered to the Equator research reporting checklist: Consolidated criteria for reporting qualitative research: a 32-item checklist for interviews and focus groups.

Patient or public contribution: A parent of a child with an ID was part of the research team informing the design, data collection, data analysis and write-up of this article.

Keywords: acute healthcare; advocacy; communication; education; implementation; intellectual disability; nursing; person-centredness; reasonable adjustments.