Exploring perceived usefulness and perceived ease of use of patient-led recording for adults with Down syndrome and their support people: A qualitative study.

Abstract

Background: People with Down syndrome often face communication barriers, cognitive limitations, and inadequate service responses during hospital clinical encounters, leading to poorer health outcomes. Patient-led recordings, where individuals use their own smart devices to capture clinical encounters, show promise in helping to address these issues. However, their use in this population remains unexplored.

Method: Semi-structured interviews were conducted with 12 adults with Down syndrome and 12 nominated support people. Interviews were transcribed and analysed using a critical realist approach to thematic analysis.

Results: Participants identified several benefits of patient-led recordings, including improved communication, enhanced comprehension, supported decision-making, increased empowerment, and positive emotional impacts. However, barriers such as awareness, accessibility, digital literacy, consent, and confidentiality concerns were noted.

Conclusion: Patient-led recordings could improve healthcare experiences for some people with Down syndrome, but addressing key barriers is necessary for successful implementation.