Use of Participatory Methods in People with Intellectual Disability

Madiha MAJID1,2, Stefan RENNICK-EGGLESTONE1,3, Gerald JORDAN4, Hayley TROWER5

1Institute of Mental Health, School of Health Sciences, University Of Nottingham, Nottingham, United Kingdom
2Coventry and Warwickshire Partnership NHS Trust, Coventry, United Kingdom
3NIHR Nottingham Biomedical Research Centre, Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, United Kingdom
4University of Birmingham, College of Life and Environmental Science, School of Psychology, Institute for Mental Health, Centre for Urban Wellbeing, Birmingham, United Kingdom
5Division of Health Sciences, Warwick Medical School, University of Warwick, , Coventry, United Kingdom

Background

 

When engaging people with intellectual disability (ID) in research, methods should remain accessible and inclusive, with reasonable adjustments made to match participant needs. Traditional methods such as interviews and focus groups have been limited to those whose communication abilities allow verbal communication and interaction. These methods discriminate against people with ID and those with severe impairments. Participatory research can ameliorate such barriers to allow understanding of their experiences and reality, and therefore their narratives.

 

Narratives of people with intellectual disability (ID) are underrepresented in research; in a population with additional health needs and poor outcomes in the context of health inequity, healthcare cannot be patient-centred, holistic or humanising if their voices are excluded. We therefore need to understand how different participatory methods have been used to elicit knowledge and understanding of experience beyond traditional methods of enquiry. 

 

Method

 

A systematic review was conducted of empirical studies demonstrating the use of participatory methods in people with ID. The review developed knowledge on the range of intellectual disabilities that have been considered, and the range of participatory methods to develop knowledge and understanding of their experiences. A summary of review findings will be presented.

 

Findings

 

Our review found that people with ID are able to produce narratives with rich insights into their experiences and allow for inclusive research. Photovoices and digital story-telling are common art-based participatory methods to elicit and understand narratives.

 

Conclusions

 

Participatory research methods offer an opportunity to develop knowledge relevant to health services, through enabling the narratives of people with ID to be heard. Greater knowledge is needed of how the use of participatory methodology can be used in a range of ID severity, and how they can be used by health service to influence change.