Quality of Life
This article reports on the results of an empirical study which involved a ‘Quality of Life’ audit of thirty-nine adults with profound learning difficulties who were resettled from hospital accommodation to supported living in the community.
The audit was undertaken longitudinally on four occasions over eighteen months after the resettlement of thirty-four service users from hospital to supported housing and five who were resettled to a residential home. The audit was part of an external evaluation commissioned by the London Borough of Sutton Council whose Social Services department was responsible for the resettlement.
The audit was conducted using a special tool developed on the basis of a comprehensive review of the literature on quality of life and its measurement in learning disability populations. The purpose of the review of the literature was to ensure that the Quality of Life Audit Tool should reflect best practice nationally and internationally.
Quality of Life is not a simple construct. It covers relatively objective external factors such as the physical environment but also less tangible features such as satisfaction with that environment and even more complex feelings such as autonomy and choice. Given this complexity, measurement also poses problems and these are exacerbated when those whose quality of life is being studied have a learning disability. Usually a key indicator in quality of life measures is the views of those concerned. If these views are not accessible, a proxy view has to be created through close observation of behaviour and circumstances.
In structuring instruments there is a good agreement within the literature that the measurement of Quality of Life should be based on both domains and indicators. Domains are the areas considered significant in quality of life and indicators are the observable features within these domains, that can be measured. Domains are thus sub divisions of the overall notion of Quality of Life and each provides a focus on a particular aspect of personal well-being. Taken together the agreed domains signify the range over which the Quality of Life construct extends.
On the basis of the quality of life review an audit tool was developed to measure quality of life in seven domains:
- Quality and Location of Housing
- Care Planning and Governance
- Physical Well Being
- Social Interaction and Leisure Activities
- Autonomy and Choice
- Psychological Wellbeing
In deciding the indicators and questions for these domains we drew particularly on items from The Comprehensive Quality of Life Scale-Intellectual/Cognitive Disability (Cummins, 1997); and from The Mood, Interest and Pleasure Questionnaire (Ross and Oliver 1999). We also drew on the work of Grierson (unpublished MSc Thesis 1996). In addition, the questionnaire also benefited from the comments and suggestions of members of the Evaluation Steering Group with a broadly representative membership including, to be as close as possible to the service users, advocates, parents and care managers.
Wherever possible we produced questions with a scale of possible responses with one to be ticked by the respondent. Scoring was then based on 5 for the most favourable and 1 for the least favourable condition in the choices. The final version of the scale included fifty questions with, wherever possible, quantified alternatives to be ticked.
The tool is is copyrighted as the Quality of Life Questionnaire V.3 for Assessing Quality of Life in Individuals with Learning Disabilities (Ellis, Watt and Hogard, 2008). Copies and scoring keys are available.
This tool was used to measure quality of life for the 39 service users first, retrospectively, at Orchard Hill and then at six month, twelve month and eighteen month points in supported accommodation and a residential home in the community. Audits, including the retrospective audit, were carried out by front line care staff and social service assessors with support from their Services Managers, and advocates and parents were involved wherever possible. The retrospective audits were further quality assured by senior staff who had worked at Orchard Hill since 2005. The researchers are satisfied that the retrospective audit was completed to the same standard as the subsequent audits and therefore offers a valid baseline for comparison.
Comparing the baseline results with results at eighteen months showed a highly statistically significant improvement overall and in each of the seven domains: the average quality of life score was 106.28 for residents when at Orchard Hill rising to 192.26 after six months in supported accommodation, a level which is maintained for twelve months (192.95) and which then rises to 206.95 after eighteen months. This represents an improvement, in percentage of possible score, from 35% to 68%. This is shown in the following table as the percentage of possible maximum at each audit. On the basis of these results it is clear that the overall quality of life for the 39 residents improves as a consequence of their resettlement into supported accommodation. There was no significant difference in the quality of life scores for the five service users in a care home and the 34 in supported living.
To triangulate the audit results questionnaire surveys were undertaken of parents/relatives and care staff to solicit their views on the quality of life for resettled residents. To a large extent their views supported the audit findings although both groups expressed concern about friendships and social relations, an area for further development. Qualitative case studies provided further corroborative evidence.
Sutton Borough Council had decided to commission independent research and evaluation to assure themselves that they had indeed achieved an improvement in life for the people resettled from Orchard Hill. We were able to produce evidence that demonstrated this to be the case. From this work our major single recommendation is that there should be widespread dissemination of the description of this resettlement scheme and its procurement and of the statistically highly significant improvement in quality of life it has brought about for people with profound learning difficulties. There are lessons to be learned here locally, nationally and internationally.