The views and lived experiences of individuals with intellectual and developmental disabilities who live in secure services: a meta-ethnography

Objectives

In the United Kingdom, numerous scandals of abuse in in-patient services for individuals with intellectual and/or developmental disabilities (IDD) have prompted major policy reforms in service delivery, including a move towards reducing long-stay hospital beds and increasing community living. Despite widespread critiques and concerns about their effectiveness, secure settings continue to be commissioned for individuals with complex forensic or mental health needs, often due to limitations in community provision. To avoid repeating past failures, changes to the current service models are warranted. An initial step is understanding first-hand perspectives to inform more effective and supportive care. This meta-ethnography aimed to synthesise the literature relating to the lived experiences of people with IDD living in secure services.

Methods

Using Noblit and Hare’s meta-ethnographic model, a systematic search of the literature was conducted on Embase, PsychInfo, and Ovid Medline. To evaluate the methodological quality of studies, the Critical Appraisal Skills Programme framework was used.

Results

Eleven studies were included. Four primary themes were formulated: sense of self; where is my power?; navigating social relationships; and necessary evil. Of these, subthemes were formed to explore shared and contrasting views on belonging and identity, powerlessness, and meaningful social contact.

Conclusions

The findings reveal shared narratives from people with IDD that highlight areas for improvement in in-patient care services. While insights can guide service redesign, the methodological quality of several studies was low, underscoring the need for more rigorous research. Clinical and research implications are discussed.