Background: People with profound intellectual and multiple disabilities (PIMD) require extensive support from the healthcare system due to their multiple disabilities and other ailments. However, little is known about the quality of healthcare that is necessary to meet these individuals’ needs. Because of their communication disabilities, their experiences must be sought through their representatives. This study aims to explore the experiences and perspectives of relatives regarding healthcare services for adults with PIMD.
Method: Semi-structured telephone interviews were conducted, totalling 12 interviews with mothers (n = 7), fathers (n = 2), brothers (n = 2) and one sister. The data were analysed using qualitative content analysis.
Findings: Relatives expressed varying experiences regarding the quality of care required for adults with PIMD and the type of interaction they had with healthcare services. Three key themes emerged from the data: (1) the importance of holistic responsibility, (2) professional specialisation including coordination and complexity and (3) the need for individual-specific knowledge.
Conclusions: To enhance quality of healthcare for people with PIMD, the provision and coordination of services must be characterised by specialist knowledge about people with PIMD, which includes a holistic perspective and close collaboration with those who have person-specific knowledge about the individual.