Relatives’ experiences of quality of healthcare services for adults with profound intellectual and multiple disabilities in Sweden

Abstract

Introduction: There is little research regarding quality of health care for people with profound intellectual and multiple disabilities (PIMD), who often are represented by their relatives, because of their limited communication. The aim of this study was to explore experiences and perspectives of relatives regarding healthcare services for adults with PIMD. Method: Twelve semi-structured telephone interviews were conducted involving close relatives of people with PIMD: mothers (n = 7), fathers (n = 2), brothers (n = 2) and a sister (n = 1). Qualitative content analysis was used. Results: Three themes emerged from the material: (1) Holistic view and responsibility, (2) Complexity and specialisation require coordination, and (3) Specific knowledge about the individual with PIMD. Conclusions: The relatives experienced that quality of health care should be based on a holistic view incorporating special competence and coordination. They emphasised the importance of an alliance, leveraging the relatives’ person-specific knowledge alongside healthcare professionals’ specialist competence.