Gelukkig geïntegreerd:onderzoek naar de kwaliteit van het bestaan van mensen met een lichte verstandelijke beperking

In the Netherlands there exist special residential facilities for youths with mild mental disabilities who have severe behaviour problems. This investigation was initially prompted by the question how people who have in the past spent some time in such residential care, are doing now. This question was investigated in two substudies, which together form the topic of this dissertation. The first substudy focused on the social position of these mildly mentally disabled people, the second on their quality of life. The latter aspect was investigated using a model based on the quality of integration and well-being. Former residents’ social position A small proportion of people with a mild mental disability spend a brief period of their lives in residential care. The Netherlands has two institutions (Groot Emaus in Ermelo and De Beele in Voorst) which provide residential care for young people with a mild mental disability who have such severe behaviour problems that they cannot be helped at other institutions. It is of great interest both to society at large and to the institutions concerned how young people who were discharged from residential care some time ago are coping now. In the first substudy, former residents - all of whom had been discharged from residential care some years ago - as well as their parents and counselors and the police, were asked about their current situation. Their social position was defined in chapter 2 as ‘an individual’s position in society in relation to others, keeping in mind that this position fluctuates with time and is based on the integration of his or her competences with the characteristics of his or her social surroundings’. The study’s design, execution and results with respect to individuals’ social position are described in chapter 3. A questionnaire was developed which was used during the interviews with 88 former residents. Most subjects had a satisfactory social position, certainly when compared to their former situation. Nor did information supplied by parents, counselors and the police at all suggest that some subjects might be in a specifically disadvantaged position. Although the results of this substudy were sufficient to inform the institutions of their former residents’ situation, the concept of social position only illustrated subjects’ current situation from society’s point of view, and not as they themselves might see it. Former residents’ quality of life In the second substudy, the concept ‘quality of life’ was substituted for ‘social position’. A model was developed to describe the concept, which is discussed in chapter 4. In this model, quality of life has a subjective component, well-being, and an inter-subjective component, integration. The components each consist of three aspects. Well-being comprises ‘physical well-being’, ‘self-acceptance’ and ‘self-fulfilment’, while integration comprises ‘physical presence’, ‘functional integration’ and ‘meaning’. In chapter 5, a secondary analysis of the empirical data is presented. Advice from experts in the field was solicited on linking a selection of questions from the questionnaire given to former residents with the quality of life model described in chapter 4. In this way, important characteristics were discerned for the distinct aspects of quality of life. The model containing these characteristics could be used to describe these youths’ quality of life. Thus the data of the first substudy (former residents’ responses to the questionnaire) could be rearranged using the information provided by experts. The general impression is that the youths’ quality of life is reasonable, although there are considerable inter-individual variations. These impressions agree with the conclusion of the first substudy regarding social position. On examining the average scores of the entire sample of former residents, almost no distinctions were found between the six aspects of the quality of life model. In chapter 6, the design and execution of the two studies is discussed. It is possible that the way the sample was drawn up, the interview method, and the procedure in which advice from experts in the field was solicited, may have influenced the results. Also some comments are made regarding the interpretation of the results. Should a reliable instrument be developed in future research to describe the quality of life of people with a mild mental disability, it could be used to improve the counseling that these people receive both within and outside residential institutions