One for all, all for one – working together for optimal participation of people with intellectual disabilities/Down syndrome. A connection between disability studies and patients participation perspective

Friday, November 1, 2013
First author:
Susan Woelders
Symposium:
Designing Methods for All
Type:
Oral
Organisations

VU Medical Centre in Amsterdam, Faculty of Medicine, department of Medical Humanities, Amsterdam, the Netherlands

All authors:

Susan Woelders, Tineke Abma, Frank Renders, Tamara Visser 

Stream:
Inclusive Methods
Trefwoorden:
intellectual disability, abbleism, relations, participation

Aim

Participation is a very broad concept. In this research we focussed on collective participation, on “having a voice”. The first aim was to make an inventory of the needs of people with intellectual disabilities in order to participate in policy, research or education and how the environment may be more open and inclusive in order to facilitate this participation. 

Secondly,  we studied the potential and experienced added value of  participation, as experienced by clients as well as their environment (e.g. professionals, caregivers). The project, at last, tries to find solutions and manners in order to extent participation of people with intellectual disabilities.

Methods

The study followed a responsive research approach and intersects with inclusive research. The aim of this responsive approach is to increase the personal and mutual understanding of a particular situation by initiating a dialogue on relevant issues with and between stakeholders. It consists of cyclical and iterative phases: information from each phase forms the input for the next phase).

For this research we studied three different settings in which people with an intellectual disability participate in policy making, education and research. We also worked together with research partners with an intellectual disability.  These research partners were not involved as a research subject but as initiators, performers, writers, analysts and disseminators of the data. Therefore this process of working together formed the fourth setting of study. (references see list below)

Results

Our research shows that people with an intellectual disability are able to participate and have a voice in research, policy and education. Participation leads to empowerment and makes personal development possible. To enable this process it’s important to reflect on the way they are invited to have their share and are enabled to have a valuable contribution. Creative methods are needed to let them have a contribution, instead of participation in formal settings. Coaches are also needed to support clients in their process of expressing their voice. Finally we can conclude that time is essential to make participation possible.

Conclusions

By working together with people with intellectual disabilities we experienced ourselves what happens when we invite them to participate. Our research  also sheds a light on the way we look at participation. People with intellectual disabilities are invited to participate, but we use our own framesworks in which they need to fit. Reflecting on the concept of participation  is constantly needed to make their contribution valuable and give them a space to have a say. 

References

Abma, T.A. (2005). Patient participation in health research: research with and for people with spinal cord Injuries. Qualitative health research 2005;15(10):1310-28.

Abma T.A., Widdershoven G.A.M. Responsieve methodologie. Interactief onderzoek in de praktijk. Lemma, Den Haag, 2006.

Greene, J., & Abma, T. A. (Eds.). (2001). Responsive evaluation: New directions for evaluation (No. 92). San Francisco: Jossey-Bass.

Guba, E.G. & Lincoln, Y.S. (1989). Fourth generation evaluation. Newbury Park: Sage.

Abma Tineke A. The Practice and Politics of Responsive Evaluation. American Journal of evaluation 2006; 27(1):31-43.

Abma et al. Onderzoek met en voor mensen met verstandelijke beperkingen. Vraagsturing wetenschappelijk onderzoek met en voor mensen met een verstandelijke beperking, 2006.

Abma Tineke & Broerse Jacqueline. Zeggenschap in de wetenschap. Patiëntenparticipatie in theorie en praktijk. Den Haag, Lemma, 2007.

Abma TA. Nierse CJ, Widdershoven GAM. Patients as Partners in Responsive Research: Methodological Notions for Collaborations in Mixed Research Teams. Qualitative Health Research 2009; 19(3): 401-415.

Abma TA., Widderhoven GAM. Responsieve methodologie. Interactief onderzoek in de praktijk. Lemma, Den Haag, 2006.

Abma TA & Widderhoven GAM. Sharing stories. Narative and Dialogue in Responsive Nursing evaluation. Evaluation & the health professions 2005; 2(1):90-109.