Abstract:

The changes taking place during the last decades regarding disability approach, focus on social inclusion and the design of family-centered intervention programs, led to more emphasis to the person with disability as an entity and to the quality of his/her life from infancy to adulthood. Deeper problem lies within the adults with intellectual disability (ID), because despite their age they are kept being treated like “children” who can’t control their lives, take decisions or make choices for situations that please them. Also, the active participation of individuals with ID in the community is limited, affecting the range of social interactions and leading them to a decreased sense of belonging. All the above constitute basic domains in a person’s quality of life (QoL) and although emphasis should be put to amplifying and improving them, the support programs in Greece are slow and not always complete or focused on the needs of an adult with ID.

Aim of the study:
The goal of this research study is to assess (a) the validity of the Quality of Life (QoL) Questionnaire in Greece and (b) the QoL of adults with ID in a city in Greece. Research questions of this pilot study focusing on the second goal are:
(a) Do individuals with ID experience a satisfying quality of life?
(b) Which are the domains of their QoL that they experience more positively and which are the ones with the most negative experiences and perceptions?
(c) Which factors affect the QoL of individuals with ID?

Methodology:
To conduct this research, the Quality of Life questionnaire (QOL.Q) by Schalock and Keith was used, which is addressed to adults with intellectual disability, after receiving permission from researcher Keith. Back to back translation from two independent researchers was used to adjust the questionnaire to Greek language. The questionnaire consists of 40 questions that are equally divided into the following four scales: a) Satisfaction, b) Competence / productivity, c) empowerment / independence and d) Social belonging / community integration.

Participants:
The sample consists of 31 adults with intellectual disability, age 19 to 48, 20 of which were living in an institution for disabilities’ boarding house, whereas the rest 11 were living with their families but were occupied during the morning hours in the sheltered workshop programs of the institution. Proxies were used for two participants with reduced communication skills.

Results:
From the analysis of the results, both the group living in the institution and the group living with their families showed low levels of independence, compared to other quality of life domains. As fas as social inclusion is concerned, adults living with their families showed reduced levels compared to those living in the institution. By giving adults with ID the opportunity to express their opinion for the quality of their life, the chances to change aspects of their lives and improve the support they receive in order to live a better life are increased. This research study shows the necessity of further investigation in a bigger sample and points out also the need for an evidence based practice that will aim to improve the QoL of individuals with ID.

Keywords:

Quality of life, intellectual disability, satisfaction, competence, empowerment, independence, social belonging, community integration.