To what extent can people with communication difficulties contribute to health research?

AIM

To present an approach to involving people with communication disorders in research.

BACKGROUND

Patient and public involvement (PPI) is promoted at all stages of research, with everyone having a right to be involved. However, the high level of communication skills often required precludes the involvement of people with communication disorders. As people from several healthcare groups have communication difficulties, it is important to establish approaches that can help to involve them.

DATA SOURCE

A study involving people with communication difficulties using computerised aphasia treatment.

REVIEW METHODS

The paper describes techniques used to help an advisory group comprising people with aphasia and their carers to collaborate. Reflections on participating in a research group were elicited through videoed interviews. A thematic analysis of the video transcripts identified issues important to the group's members.

DISCUSSION

The approach to patient and public involvement in research enabled collaboration with people with aphasia at all stages of research, including contributing to recruitment, refinement of protocols, new research methods and dissemination of project outcomes. Allowing time for careful preparation of group meetings, facilitation techniques and activities is crucial to achieve this level of involvement.

CONCLUSION

The group experienced increased confidence in communicating, stimulation and feelings of empowerment and being able to influence the future treatment of people with aphasia.

IMPLICATIONS FOR PRACTICE/RESEARCH: People with communication difficulties need not be excluded from PPI activities designed to inform clinical practice or health research. Inclusion of this group can be made possible by using creative methods of exchanging ideas, reducing reliance on rapid, complex spoken interaction.