The impact of involvement on service users

Cotterell, Phil, Harlow, Gwen and Morris, Carolyn (2008) The impact of involvement on service users. INVOLVE 6th national conference. 11 - 12 Nov 2008.

Abstract

This presentation will explore key issues concerned with the different personal impacts that involvement in services or research can produce for service users.

Whilst service user involvement has been advancing in the area of cancer and palliative care services and research very little direct attention has been paid to the effect involvement has on involved service users.

We have been working with service user groups and individuals in cancer care, palliative care and cancer research using group discussions with service user groups and individual interviews to explore the personal impacts of involvement. The study was funded by Macmillan Cancer Support. Two service user researchers were key members of the research team actively involved in all stages of the study.

We present new findings that include:

•The motivations, expectations and barriers regarding involvement
•The learning, emotional and intellectual, that comes from being involved
•The personal impacts, positive and negative, that involvement can produce
Reflecting on all our findings, we expect learning and discussion to focus on:

•The wide variety of personal impacts that can arise for service users
•The implications of these impacts for service users themselves, service user groups and organisations interested in engaging with service users and their groups

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