☐Background and purpose of the study
❍The deinstitutionalization of people with disabilities has been on the social agenda since the mid-2010s, and while public opinion for and against deinstitutionalization has been building, there is a paucity of evidence for reconciling this controversial issue.
❍The aim of this study is to systemically review international research trends and key findings regarding the deinstitutionalization experience of people with disabilities, and to identify a measurement framework that can be used to examine the quality of life of deinstitutionalized people with disabilities.
❍This study may also have some implications for the challenge of building community-centered care systems by providing empirical support to the deinstitutionalization debate and suggesting considerations for designing related surveys and studies.
☐Key findings
❍Review of the background and key findings of foreign deinstitutionalization studies
-Since the mid-1960s, the accumulation of deinstitutionalization experience and research, centered in the United States, has shaped the research landscape surrounding the effects of deinstitutionalization.
-The Pennhurst Longitudinal Study (1979–1985) in the United States, known as the flagship study, is notable in that it reveals the multidisciplinary (research, policy, and social movement) nature of the study of deinstitutionalization and provides an example of a systematic longitudinal study from a comprehensive perspective of the changes in quality of life (for the relevant person, family, community, and costs of maintenance).
-Since this study confirmed the positive effects of deinstitutionalization, a number of follow-up studies have been conducted within the United States, other Anglo-American countries, and the European Union, and these studies have reported consistent findings that the effects of deinstitutionalization have been “positive” in general.
-However, the findings of the survey should be interpreted in the context of the survey itself and the interaction of the survey subject with environmental factors.
❍Review of the survey framework and scales for measuring “quality of life” in the deinstitutionalized persons
-Measuring and evaluating “disability” and “deinstitutionalization” from the perspective of the universal yet contextual concept of “quality of life” requires a complex consideration of common (objective) and individual (subjective) aspects, and the (changing) relationship between them.
-A review of existing quality of life measurement work for deinstitutionalized people with disabilities identified six main scales: (1) San Martin Scale; (2) Money Follow the Person Quality of Life Survey; (3) Personal Outcome Measures; (4) Quality of Life Questionnaire; (5) Personal Life of Quality; and (6) World Health Organization Quality of Life.
-The common elements across these scales were: (1) health, including physical or emotional well-being; (2) self-determination or autonomy; (3) social relationships; (4) community integration; and (5) human rights (with many other elements measured by different scales).
-These scales emphasize environmental factors that can be changed rather than personal factors that may be difficult to modify, such as personal injury or physical well-being.
❍Evaluation of measurement scales of quality of life for people with disabilities
-Given the contextual nature of the concept of “quality of life,” scales can change so that it is necessary to consider how to capture what is meant by “quality of life” while taking into account the context and goals of the survey rather than trying to find the “correct answer.”
-It is necessary to consider a wide range of quality of life variables when designing the survey on the effects of deinstitutionalization.
-While it is meaningful to compare the quality of life measures of individuals with disabilities before and after deinstitutionalization, it is important to understand which areas and indicators serve as barriers to their ability to live independently.
☐What to consider when designing a survey on quality of life for deinstitutionalized people with disabilities
❍It is necessary to be conscious of the purpose of measuring the quality of life of people with disabilities.
-It should be recognized that the concept and survey of quality of life are conducted in a specific social context.
-The purpose of quality of life measures is not to “justify deinstitutionalization” or “assess who is an appropriate candidate for deinstitutionalization.”
-The survey on quality of life for deinstitutionalized people with disabilities ultimately aims to provide information as reference in creating the inclusive environment for their life.
❍It is necessary to expand the scope of survey.
-It has been considered that a comparative review of quality of life measures for individuals with disabilities before and after deinstitutionalization will be meaningful only if it is based on continuous assessments.
-It is also necessary to identify which aspects of each area and indicator are barriers to independent living for people with disabilities in a different context from the comparative review of their lives before and after deinstitutionalization.
❍It is necessary to expand and develop research methodologies and content.
-Depending on the purpose of the survey, the content may vary: various comparative combinations may be created with facility residents, deinstitutionalized residents, community residents, the general population group, etc.
-It is necessary to combine objective measurement using scales with subjective measurement of individuals with disabilities or a third party with good knowledge of their daily lives.
-It is necessary to consider the possible expansion of information collection and research methods through information and communications technology.
❍Ethical and practical considerations
-Efforts are necessary to make research more accessible to people with developmental disabilities or those who have lived in institutions for significant periods of time.
-It is necessary to ensure that responses and expressions of persons with disabilities are adequately communicated and respected and carried out with prior consent.
> Future Research > Future Reports > Research Reports