Use of information on outcomes and quality of services in decision making about services for people with intellectual disabilities and autism

Background:

User choice has been at the centre of government policy on social care. Information on the quality and availability of services is central to user choice. This study aimed to explore decision-making – particularly the role of quality information – about services for adults with learning disabilities or autism.

Method:

Semi-structured qualitative interviews were conducted with 11 service users, 12 family carers, eight care managers and four advocates. Interviews were transcribed and coded using a combination of a priori, emergent and in vivo codes. The segments were analysed using Attride-Stirling’s thematic networks tool. Basic, organising and global themes were identified by groups

of actors and their experiences compared and contrasted.

Results/Findings:

Global themes that emerged were related to the type and sources of information, the decisionmaking process, barriers to choice, and the emotional aspects of the process. Many individuals and families had limited access to information,

which in turn restricted choice. Care managers strive to offer options to individuals, but this could be restricted by availability, urgency of the move or other challenges.

Conclusions:

This study supports existing evidence that suggests low awareness and limited use of quality information among users of social services and their families in England. Care managers had access to a broader range of sources of information and were often gatekeepers for this information. Implications for commissioners, care managers, the Care Quality Commission, families

and individuals themselves will be highlighted.