Developing a Mental Health Guide for Families and Carers of People with Intellectual Disabilities

Background Although there is already information available about caring for someone with a mental health problem, there is very little written for families and carers of people with intellectual disabilities. Materials and methods This paper describes the development of a Guide as such a resource. The consultation stage involved interviews and focus groups with families, service users and paid carers ( n = 20) to highlight their needs and preferred format. Additional carers ( n = 12) completed structured questionnaires to evaluate the Guide. Results The initial consultation showed that an easily accessible and user‐friendly information resource was needed. The evaluation showed that family carers were satisfied with the Guide, finding it easy to read and covering most of the information required. However, they did highlight areas that needed further detail. Conclusions The involvement of carers in the development of such resources is essential, emphasizing the benefit of carers’ knowledge and experience to professionals.