Perception of Well-Being Within Adults With Intellectual or Developmental Disability and Autism Spectrum Disorder

BACKGROUND: The concept of quality of life (QOL) is becoming central in treatment planning and outcome measures for people with disabilities. Theoreticians view QOL as reflecting both objective variables (wealth, education, health) and the subjective well-being (SWB) perspective of a person’s life. Whereas objective aspects can be measured indirectly, SWB can be measured only by asking the person directly. Research in this area concentrates on the following: what and how to measure, whether a proxy report can be reliable, the implications for treatment, and whether there are typical differences between populations. A collaboration of an occupational therapy department and an organization that provides services for people with intellectual or developmental disability (IDD) and autism spectrum disorder (ASD) led to development of a computerized SWB that can be used by their residents. After an extensive validation process, we conducted a study with the aim of examining the SWB profile of adults who live in supported communities and at home, assessing proxy reports, and assessing the contribution of the information obtained from the computerized questionnaire for planning and the implementation of the support program.

METHOD: We utilized a mixed-methods study design, using quantitative and qualitative methods for analysis of participants’ SWB and a proxy point of view on the self-reported SWB. Data were collected from the Beit-Ekstein (BE) organization, which provides housing and employment services for people with IDD and ASD, and the same population living at home. Participants were 100 people with IDD and 150 people with ASD, aged 21 to 60 yr. Using a snowball method, we conducted the study with 10 professional coordinators from BE, a convenience sample of 30 family members, and 30 people with IDD and ASD who lived at home.

Measures included the Personal Wellbeing Index—Intellectual Disability (PWI–ID). The PWI–ID is a well-established “pen and pencil” questionnaire for assessing SWB. It includes eight questions that encompass seven domains in life and a general estimation of well-being (WB). An accessible and adapted computerized version of the PWI–ID (C–PWI–ID) was developed and validated with this population. The process included the following: language adaptation, mediation of written material to auditory, mediation of the concepts by using pictures and symbols, and adaptation of the scales used to estimate WB. In addition to using the C–PWI–ID, we conducted in-depth interviews with professionals and family members. Analytical methods included quantitative statistical analysis (descriptive and correlation methods) and qualitative content analysis.

RESULTS: The initial stage of the research included 60 individuals with IDD and 120 individuals with ASD who were able to fill out the C–PWI–ID successfully. Statistical descriptive analysis showed that people with IDD generally rated their SWB within the 65% range and expressed the least satisfaction with their “standards of living.” The ASD group generally rated their SWB within the 75% range and expressed the least satisfaction with their “personal relationships.” This presentation includes the analysis of the entire population and shows all aspects of this research.

CONCLUSION: Initial data show that people with IDD and ASD can provide reliable information concerning their SWB when provided with an adapted measure—as opposed to the conventional way of asking through a proxy report. The current data analysis indicates that there might be differences between the study groups in their satisfaction from different life domains. The analysis of the entire data is underway and is presented and discussed in relations to the relevant literature.