Quality of services for adults with severe/profound intellectual disability

In this scoping review, dimensions of quality in health care services for adults with severe/profound intellectual disabilities are explored. The following research question has guided the process: Which dimensions of quality in services are evident in scientific publications and reports related to persons with severe/profound intellectual disability, and what are the main findings? A total of 87 national and international publications are reviewed, in addition to official public documents and national guidelines.

Persons with profound intellectual disability are citizens with severely reduced cognitive and communicative functions. Their communication is mainly non-verbal, and they are in need of lifelong support from healthcare services and other authorities.

The understanding of quality underpinning this review is inspired by Donabedian’s three dimensions and indicators of quality: structure-, process- and result indicators. In addition to Donabedian’s indicators, the national guidelines from the Norwegian Directorate of Health “Good health and care services for persons with intellectual disability” and its main themes have guided the analytical process for assessing quality dimensions in health care services.

The results indicate that quality is related to sufficient resources, stability and continuity in staff and specialised competence. Specialised competence relates to non-verbal communication forms, in-depth knowledge of significant health challenges and additional challenges for this group, and also involves specific observational competence.

This review indicates the following key points for succeeding/fulfilling quality within health care services for persons with severe/profound intellectual disability:

• Staff in full positions and shift rotation plans which ensure stability and continuity within services provided.

• “Huge” residential housings bigger than the national recommended norm should be avoided.

• There should be close cooperation with family members and other next of kin who know the person well, and family and parental knowledge should be used as a source of learning and for building competence within services. 

• Special attention should be given to the significant health challenges and risk for health problems that people with profound intellectual disability are exposed to. An annual health check with GP should be carried out with a focus on general health, vision, hearing, medication, pain assessment, positioning and general assessment of quality of life.

• Staff should have sufficient competence related to:

› Non-verbal communication forms and knowledge related to implications of sensory impairments and how these might complicate or enhance communication challenges as well as participation in everyday life.
› Specific observational competence in order to monitor the person’s somatic as well as mental health, and well-being in everyday life.

• Attention towards the challenges related to gain knowledge about user-satisfaction, welfare and experiences of well-being for this group. And the fact that such knowledge has to be gained in alternative ways and in close dialogue with those who know the person well.