Structured observational research in services for people with learning disabilities

Introduction

Finding out about the experience of people needing social or health care is a fundamental requirement of policymakers and practitioners. Understanding people’s experiences permits evaluation of whether the aims of policy are being translated into practice in the way intended, whether there are unintended and unanticipated consequences which need to be addressed and whether there are areas of experience not touched by practice to which attention should be given.

Structured observation has been widely used as an alternative to, or in addition to, proxy respondents, where the severity and complexity of people’s cognitive impairment prevents them describing their experience using other methods. Observational research is particularly useful where people using services are unable to answer interviews or questionnaires about their experiences, and where proxy respondents may not be sufficiently accurate sources of data.

Observation has the advantage, as a research method, of directly accessing the ‘lived experience’ of people using services. It is not filtered through the responses of proxies and it is not based on assessments of states or capacities. It involves examining what actually happens.

Objectives

This review focuses on structured observational research, primarily in services for people with learning disabilities.

Findings

The review illustrates the use of observational data in assessing and improving the quality of services. Using examples from the research literature, the review deals with the question of what to observe and how to define it so that the information gathered is valid and reliable. It deals with sampling (how often to observe and for how long) in order to obtain representative information, considers the practical steps that have to be taken in order to make observations in services, and shows how to analyse and present observational data.