Evaluation of Family Quality of Life after Family-Oriented Support with Young Adults with Intellectual Disabilities and Families

Friday, November 1, 2013
First author:
Heumen L. van
Family Quality of Life

1 Institute on Disability & Human Development, University of Illinois, Chicago, USA

2 Stichting Disability Studies in Nederland, Amersfoort, the Netherlands

3 Windesheim University of Applied Sciences, Almere, the Netherlands

All authors:

Lieke van Heumen1, Alice Schippers2, Jolanda Kleine3, Zia Steinbach3, Anice Adel Nikkhooij3

(Family) Quality of Life
Family Quality of Life, Intellectual Disabilities, Transition, Community


The current study evaluates the long term impact of a project in which families were individually supported in the realization of personal future plans in the city of Almere, the Netherlands (2004-2006).


The study used fourth generation evaluation principles (Guba & Lincoln, 1989). Data collection consisted of semi-structured interviews with family members and adults with intellectual disabilities as well as of focus groups with both groups. Photo voice was used as an accessible strategy to actively engage the participants with intellectual disabilities in the research process (Wang, 2005). The results of the photo voice were presented to stakeholders in the wider community at a town hall meeting.


The majority of the participants evaluated the project as having a lasting positive impact on their quality of life. Family members were enabled to better advocate for the young adult with a disability as they learned to think outside the box. As a result of the project they also better incorporated the individual preferences of their family member with a disability. They voiced concern about the limited timespan of the project, the inaccessibility of the society and the quality of residential care. The adults with intellectual disabilities evaluated the project and their quality of life mostly positive, but were also concerned about their safety and experienced inaccessibility and exclusion.


Effective support in individual future planning needs to be family-oriented. In order to be successful in supporting the quality of life of this population, the society needs to become more accessible and barriers to meaningful inclusion need to be removed.


Guba, E. G., & Lincoln, Y. S. (1989). Fourth generation evaluation. London: Sage Publications, Inc.

Wang, C. C. (2005). Photovoice: Social change through photography.