Goalsetting as a tool for involving people with learning disabilities in healthcare.

Background: This research was undertaken during a period of rapid change within the NHS including the deinstitutionalisation of care, and increased emphasis on partnership working. The main aim of the study was to examine collaborative goalsetting as a means of (a) involving people with learning disabilities in healthcare decision making and (b) measuring the impact of treatment interventions. Study Design: Initially a qualitative approach was taken. Case study methods centred on the introduction of Goal Attainment Scaling (GAS) as an individualised measure of outcome within two acute specialist in-patient units. Views of co-operative care planning and evaluation were elicited from patients and clinicians through the use of GAS. A unique patient interview schedule was developed incorporating pictures as a supplementary method of establishing users' views. Following this a two-phase interview survey included views of care from eight practitioners and 10 managers and service commissioners. Finally a survey of 94 key stakeholders within Scottish learning disabilities services was undertaken. Findings: Practitioners had difficulties implementing GAS. Twelve patients were selected for the GAS study by members of the multidisciplinary team. In total 16 goals were set and scaled and impact measured. Six patients participated in interviews, describing the users' view of the therapeutic process. The findings highlighted barriers to the inclusion of people with learning disabilities such as rapid discharge, extreme behaviour and severe learning disabilities. In all surveys outcome measurement was viewed as complex as well as open to manipulation. A consistent preference for individualised measures of outcome for people with learning disabilities emerged. The research indicated multiple perspectives on stakeholders' attitudes to partnership working, regarding, for example, power differentials, professional terriorialism and interagency mistrust