View of relatives on quality of care: narratives on the care for people with visual and intellectual disabilities

Abstract

In the care for people with intellectual disabilities in the Netherlands there is a growing emphasis on the relationship with relatives. The aim of this study is to explore the views of relatives regarding the quality of care and support for people with visual and intellectual disabilities. In this qualitative study twelve semi-structured interviews were conducted with relatives of people with visual and intellectual disabilities having experience with multiple group-homes of specialized care organizations. Analysis revealed seven overarching themes: 1) Be partners in care; 2) ‘Know’ the person with the disability; 3) Provide care from the heart; 4) Provide safety; 5) Provide opportunities for development; 6) Provide continuity in care; 7) Provide a ‘home’. We conclude that the attitudes of care professionals are very important to provide good care and support, as seen from the perspective of relatives. For relatives, it is important to be acknowledged by the care professionals. Points of interest This article is about the viewpoint of relatives concerning the question: what is your understanding of good care and support for people with a visual and intellectual disability living in a group-home? Relatives wish to be involved in the care that the person with disabilities needs and receives. They would like to be seen as partners of care professionals in providing care and support and wish to be contacted if choices or decisions are made. It is important for people with a disability living in a group-home to be respected as a person by care professionals, to be able to learn new things, to receive structured care by familiar carers and to feel safe and at home in the group-home. The findings from this study may serve as recommendations for care organizations and professionals.