What outcomes are important to people with long-term neurological conditions using integrated health and social care?

Abstract

Measuring the outcomes that are meaningful to people with long-term neurological conditions (LTNCs) using integrated health and social care services may help to assess the effectiveness of integration. Conventional outcomes tend not to be derived from service user experiences, nor are they able to demonstrate the impact of integrated working. This paper reports findings about outcomes identified as being important to people with LTNCs using integrated services. We undertook qualitative work with five community neuro-rehabilitation teams that were integrated in different ways and to different degrees. In-depth, semi-structured interviews were conducted with 35 people with LTNCs using these teams. Data were collected between 2010 and 2011 and analysed using an adapted version of the Framework approach. We identified 20 outcomes across three domains: personal comfort outcomes, social and economic participation outcomes, and autonomy outcomes. Inter-relationships between outcomes, both within and across domains, were evident. The outcomes, and the inter-relationships between them, have implications for how individuals are assessed in practice.