Experiences with shared decision-making in psychotropic medication for people with intellectual disabilities: perspectives of experts by experience, relatives, and support professionals.

内容摘要

Shared decision-making (SDM) is considered essential for person-centred care, yet individuals with intellectual disabilities (ID), their relatives, and support staff often experience barriers such as understanding complex medical information, communication challenges, and insufficient professional support. These challenges are particularly concerning in the context of psychotropic medication, which is frequently prescribed in people with ID, often without an appropriate indication, raising issues of overmedication and quality of life. Nevertheless, meaningful involvement of individuals with ID has not become routine practice. Evidence shows that both patients and carers wish to be more involved, yet little is known about how SDM is experienced in the context of psychotropic medication prescribing for people with ID. This study therefore aimed to explore how individuals with ID, their relatives, and direct support professionals perceive and experience SDM in psychotropic medication-related decisions. We conducted a qualitative interview study as part of a larger mixed-methods project on shared decision-making in medication use among people with ID. Using a phenomenological approach, we conducted semi-structured interviews with individuals with ID, their relatives, and direct support professionals to explore their experiences with SDM in the context of psychotropic prescribing. The interview guide was co-developed with experts by experience to ensure accessibility and relevance. Interviews were audio-recorded, transcribed verbatim, and analysed using thematic analysis by two researchers to enhance reflexivity and reliability. The thematic analysis identified seven themes: 1) communication and relationship with clinicians, 2) understandable and tailored information provision, 3) decision-making and patient influence, 4) medication and treatment choices, 5) involvement of relatives in collaboration with professionals, 6) accessibility and continuity of care, and 7) impact on daily life and functioning. These findings demonstrate that shared decision-making in psychotropic medication for people with ID is shaped by relational dynamics, communication quality, and organisational conditions. Meaningful involvement requires accessible and tailored information, the inclusion of relatives and direct support professionals, and care practices that support collaboration. By highlighting these needs and mechanisms, the study clarifies how SDM is experienced in this specific context and offers directions for strengthening person-centred and collaborative medication practices.