The subjective experience of adults with intellectual disabilities who have mental health problems within community settings

Research into the views of people with dual intellectual and mental health difficulties is sparse. The purpose of this paper is to gain a greater understanding of how individuals with mild intellectual disabilities living in the community understand their psychotic symptoms and experiences.

Five participants with intellectual disabilities and psychotic symptoms living in the community were interviewed. The interview schedule explored key areas: understanding and experiences of having an intellectual disability and a psychotic disorder, and of services provided. The data were analysed using Interpretative Phenomenological Analysis.

The analysis elicited three main themes: self-concept: “How I understand and see myself”, incorporates what participants understood about their labels, their experiences, and how these labels fitted in with their self-concept; Impact: “How having mental health problems and learning difficulties affect my life”, encompasses communication barriers, lack of control, and stigma and vulnerability. The third main theme was coping: “How I cope with my mental health and learning difficulties”.

The findings suggest that the participants, rather than identifying with specific psychiatric labels perceive themselves as having individual and specific needs. The analysis highlights areas that can be developed to help with coping; ensuring people are respected and heard, empowerment through the development of positive social roles, and psycho-education. These results are a step towards developing understanding of this group of service users.

There has been no previous research into the perspective of this service user group in the community. The study makes recommendations for future person-centred interventions.