Quality of life of adults with intellectual disability – A research study in Greece

Lefkothea Kartasidou, Assistant Professor, University of Macedonia (Greece)Elisavet Pavlidou, PhD Student, University of Macedonia (Greece)Anastasia Chideridou – Mandari, M.A Student, University of Macedonia (Greece)

Introduction• Quality of Life (QoL) is characterized as “the perceptions of people about their position in life in the context of cultural and value system in which they live and in relation with their objectives, expectations, standards and concerns”

(World Health Organization Quality of Life Group, 1995)

• The value that gives the individual in each dimension may vary and depend on personal expectations, which determine what dimensions of life considered important for a specified period

Good QoL = desired conditions of living their acquisition

IntroductionQoL as a multidimensional concept

The QoL is a multidimensional concept that is influenced by both personal and environmental factors:

Personal factors•The objective living conditions•The staff of well-being•The aspirations of every individual

IntroductionQoL as a multidimensional concept

Environmental factorsThere are three levels of system, which can significantly influence the QoL: a)Microsystem (the narrow and everyday environment of the individual), b)Mesosystem (the neighbourhood, the community and the organizations), and c)Macrosystem (the culture of the place, the socio-political trends and other social factors that influence the values and living conditions of the individual)

IntroductionSupport programs for adults with intellectual

disability (ID)

Individuals with ID should have control of their lives in order to have a good QoL and this goal should constitute the main and basic direction of all support services.

The way of thinking of support programs and services and the mode of agencies has to change:

•They have to offer to adults with ID opportunities and alternative ways to demonstrate their preferences and decisions through their daily life.

•They have to adjust the environment in which adults with ID reside.

IntroductionSupport programs for adults with intellectual

disability (ID) (2)

• The implemented interventions should meet the basic principles of QoL.

•A focused on the improvement of QoL support program should aim on long-term rather than short-term results

• The organizations and educational settings should focus on the transition from a “closed” body to bridge with the community.

MethodologyAim of the study

The goal of this research study is to assess:a)the reliability of the Quality of Life Questionnaire (QoLQ) in

Greece and b)the QoL of adults with ID in a Special Postsecondary

Educational Setting in Greece

Research questions of this pilot study focusing on the second goal are:

a)Do individuals with ID experience a satisfying QoL? 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)Does the environment influence the QoL of individuals with ID?

MethodologyParticipants

• 31 adults with ID (22.58% mild ID, 61.29% moderate ID and 16.13% severe ID)

• 19 to 48 years old

• 58.06% male - 41.94% female

• 20 were living in an institution for disabilities’ boarding house

• 11 were living with their families (occupied during the morning hours in the sheltered workshop programs of the institution

• 27 participants have a job

MethodologyInstrumentation

•The Quality of Life questionnaire (QOLQ) by Schalock and Keith (addressed to adults with ID)

•Back to back translation questionnaire adjustment to Greek language

•40 questions - equally divided into 4 scales:▫Satisfaction▫Competence / Productivity▫Empowerment / Independence▫Social belonging / Community integration

•Interview and 2 proxies (for 2 adults with reduced communication skills)

Reliability and Correlations

Original Scale Greek Version

Satisfaction .78 .604

Competence/ Productivity .90 .859

Empowerment/Independence .82 .633

Social Belonging/ Community Integration

.67 .373

Total .90 .724

Table 1: Reliability

Reliability and Correlations• Each subscale is strongly correlated with the total score of

QoL• “Social Belonging/ Community integration” is correlated

with “Empowerment/ Independence

Social Belonging/ Community Integration

Total QoL

Satisfaction .429*

Competence/ Productivity .653**

Empowerment/Independence .417* .694**

Social Belonging/ Community Integration

.587**

Table 2: Correlations between subscales and total raw score

p < .01; * p < .05

Results• All participants are experiencing a good level of QoL

(86.39 out of 120)• The lowest level is experienced on “Empowerment/

Independence”.

Mean St. Dev. Min. Max.

Satisfaction23.24 2.895 16 28

Competence/ Productivity21.47 4.713 12 29

Empowerment/Independence19.76 3.770 13 29

Social Belonging/ Community Integration 21.92 3.000 17 27

Total Score QoL86.39 8.698 65 102

Table 3: Mean Scores of scales of QoL

Results

Table 4: Dominant answers on ‘Satisfaction’

1. Life treats me like everybody else. 67.7%

2. I get some fun and enjoyment out of life. 58.1%

3. Compared to others, I am in almost the same, well off. 51.6%

4. The most of the things that happen to me are acceptable. 45.2%

5. I am very satisfied with my current home or living arrangement. 80.6%

6. I have the same number of problems as others. 45.2%

7. I occasionally feel lonely, at least 5 or 6 times a month. 45.2%

8. I seldom or never feel out of place in social situations. 48.4%

9. I am successful as the average person compared to others. 58.1%

10.My family members make my feel an important part of the family.

74.2%

ResultsTable 5: Dominant answers on ‘Competence/ Productivity’

11. My educational or training program prepares me very well for what I am doing now.

45.2%

12. I definitely feel my job or other daily activity is worthwhile and relevant to either myself or others.

74.2%

13. I feel very good, and others tell me I am good at my job. 58.1%

14. People treat me the same as all other employees on my job. 64.5%

15. I am very satisfied with the skills and experience I have gained or I am gaining from my job.

67.7%

16. I am not sure what learning skills will help me get a different or better job (vague, general skills mentioned).

48.4%

17. I do not feel I am paid enough for my work. 90.3%

18. I definitely do not earn enough to buy what I need from my job. 90.3%

19. I am very satisfied with the benefits I receive at the workplace. 58.1%

20. My Supervisor is present only when I need him or her. 54.8%

ResultsTable 6: Dominant answers on ‘Empowerment/ Independence’

21. I decide to choose the job or other daily activities because of pay, benefits, or interests.

51.6%

22. Me, with assistance from others decide how to spend my money. 41.9%

23. Never on my own I use health care facilities (doctor, dentist, etc.). 58.1%

24. I have some control over things I do every day, like going to bed, eating, and what I do for fun.

64.5%

25. My friends can visit my home any day, as long as someone else approves or is there.

48.4%

26. I have a key to my home and use it as I wish. 67.7%

27. I can’t have a pet if I want to. 48.4%

28. I have a full guardian. 61.3%

29. There are people living with me who sometimes hurt me, pester me, scare me, or make me angry and those problems occur once a month or once a week.

48.4%

30. Overall, I would say that my life is somewhat planned for me. 67.7%

ResultsTable 7: Dominant answers on ‘Social Belonging/

Community/Integration’31. I belong to in 2-3 civic or community clubs or organizations (including

church or other religious activities).41.9%

32. I am very satisfied with the clubs or organizations (including church or other religious activities) I belong to.

64.5%

33. I seldom worry about what people expect of me. 51.6%

34. I talk to (or associate with) my neighbours, either in the yard or in their home, 3-4 times per week.

35.5%

35. I rarely/never have friends over to visit my home. 41.9%

36. I attend recreational activities (homes, parties, dances, concerts, plays) in your community, 3-4 times per week.

67.7%

37. I usually, most of the time, participate actively in those recreational activities.

77.4%

38. I am married, or have the opportunity to date anyone I choose. 35.5%

39. My neighbors treat me fair (say hello, visit, etc.). 58.1%

40. Overall, I would you say that your life is Okay. 71%

Results

• There is a statistical significance among participants living with their families and those living in an institution for disabilities’ boarding house

The first group living with their families had lower mean score on “Social Belonging/ Community Integration” {t=2.132, df=29, p=.042) than the second group.

• 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 but there was (no) statistical significance.

Discussion• The reliability of the QoLQ needs to be further tested

along with factor analysis for Greek population (Cronbach’s Alpha was very low in three of the four subscales)

• Individuals with ID in Greece experience a moderate level of QoL.

• The overprotection, the Greek family shows, towards family members with disability explains the low means scores of the domain “Empowerment/ Independence”.

Discussion• Individuals with ID express their satisfaction on the educational or training program but they are not sure about the learning skills in case they will have to search for a new job.

Need for taking into consideration the content of the vocational training through the design and implementation of educational programs in order to:

▫meet the needs of individuals with ID on a long term basis and

▫prepare them for the transition from one setting to another

DiscussionThe improvement of the QoL is a collective responsibility of support agencies and public

policy

Need for implementation of a mechanism and process of funding and technical support

Workable practices that focus on the integration of the individual in the community

and increase personal outcomes

DiscussionLimitations and Future Suggestions

• The small number of participants can only give some important data concerning the usefulness of the questionnaire.

• Necessity of further investigation in a wider sample.

• Need for an evidence based practice that will aim to improve the QoL of individuals with ID.

Thank you for your attention