Evidence Library

Abstract:

Aim: To use a participatory action research approach working with people with disabilities to explore the views of the disabled community on dying with dignity and physician-assisted suicide legislation.

Method: A Community Advisory Group was formed at the beginning of the project and involved in all aspects of the research. They helped with:

• defining the sample and identifying potential participants
• developing the interview questions
• conducting interviews
• analysing data
• preparing the final report and presenting the findings to participants
• meeting with local policy makers and other stakeholders.

Findings/recommendations: The paper reports on the benefits and ethical dilemmas raised by this example of participatory research.

The project benefited from the involvement of people with disabilities through:

• the use of the right language
• better research tools
• access to a highly diverse group of participants
• better reporting back to the community in ways that stimulated further dialogue as well as plans for education and action.

The community researchers benefited from:

• learning new skills, particularly research skills.

The academic researchers benefited from:

• learning about the experiences of people with disabilities which helped strengthen the identification of relevant themes in the interview data.

External link: The following links will take you to information on this entry on an external website. INVOLVE is not responsible for the content or the reliability of the external websites. Link to abstract

Related entry: none currently available

Categories: health
Designing research
Undertaking research
Analysing and interpreting
Writing up and disseminating
impact on research
impact on service users involved
impact on researchers
impact of public involvement
journal article
Recruitment
Implementation and change

Date Entered: 2009/01/28

Date Edited: 2012/11/21