Evidence Library

Abstract:

This chapter describes the experiences of a group of service users with different life-limiting conditions who were involved in a research project in palliative care.

The service users helped with:   

• designing the project and deciding what questions to ask
• assisting with how the research data was collected
• the data analysis
• teaching and writing about the work they'd done.   

This chapter provides a detailed account of the service users' experiences of involvement. They describe the positive benefits including:   

• being able to escape from their situation
• being able to share the lessons from their experience 'to make a smoother path on which other service users might travel'
• feeling valued and contributing so something worthwhile
• gaining understanding and developing new skills.   

However there were some upsetting aspects to their involvement, in particular the loss of team members through ill-health and hearing the details of what some of the interviewees had said. The support provided within the group proved an important means of coping with this upset.

Related entry: none currently available

Categories: health
public health
social care
Designing research
Analysing and interpreting
Writing up and disseminating
impact on research
impact on service users involved
impact of public involvement
book chapter

Date Entered: 2010/09/28

Date Edited: 2012/11/21