By studying either the experiences of people with intellectual disabilities or those of their carers, researchers have compartmentalised often intricately linked lives. In this qualitative research study, semi-structured interviews were conducted with people with intellectual disabilities and/or their carers. Services for people with intellectual disabilities often failed to offer equal access and sometimes further alienated people. While some families were able to develop effective partnerships with services, others felt misunderstood. They, as family members, had a unique knowledge of the person they were caring for, which was rarely acknowledged, let alone utilised by services. As a result, families and services worked on different knowledge bases, which was translated into different approaches to independence and risk taking. All the people interviewed were adults, sometimes cared for by aging parents who occasionally also suffered from disabling conditions. This 'family life cycle' was not often taken into account in the planning of services, which tended to be delivered either for the benefit of the person with intellectual disabilities or his / her closest carers. Yet, people with intellectual disabilities live in a caring environment with which they form a coherent and particular whole. This should inform the development of more efficient, personalised and holistic services.
|Journal||The International Journal of Nursing in Intellectual and Developmental Disabilities|
|Publication status||Published - 12 Nov 2004|