Service user involvement in cancer care: the impact on service users

• Published in: Health expectations : an international journal of public participation in health care and health policy 2011-06, Vol.14 (2), p.159-169
• Main Authors: Cotterell, Phil, Harlow, Gwen, Morris, Carolyn, Beresford, Peter, Hanley, Bec, Sargeant, Anita, Sitzia, John, Staley, Kristina
• Format: Article
• Language: English
• Subjects: Adult; Aged; Attitude of Health Personnel; Breast cancer; Cancer; cancer care; Cancer research; Client participation; Female; Focus Groups; Health services; Humans; impact on service users; involvement; Male; Medical research; Middle Aged; Motivation; National health services; Neoplasms - psychology; Neoplasms - therapy; Original Research Papers; Palliative care; Palliative Care - psychology; Participation; Participatory research; Patient Care - methods; Patient Care - psychology; Patient participation; Qualitative research; Service delivery; service user; Social Support; State Medicine; Survivors - psychology; United Kingdom; User groups; User involvement; Womens health
• ISSN: 1369-6513; 1369-7625
• DOI: 10.1111/j.1369-7625.2010.00627.x

Background  Service user involvement is embedded in the United Kingdom’s National Health Service, but knowledge about the impact of involvement on service users, such as the benefits and challenges of involvement, is scant. Our research addresses this gap. Objective  To explore the personal impact of involvement on the lives of service users affected by cancer. Design  We conducted eight focus groups with user groups supplemented by nine face‐to‐face interviews with involved individuals active at a local, regional and national level. Thematic analysis was conducted both independently and collectively. Setting and participants  Sixty‐four participants, engaged in involvement activities in cancer services, palliative care and research, were recruited across Great Britain. Results  We identified three main themes: (i) ‘Expectations and motivations for involvement’– the desire to improve services and the need for user groups to have a clear purpose, (ii) ‘Positive aspects of involvement’– support provided by user groups and assistance to live well with cancer and (iii) ‘Challenging aspects of involvement’– insensitivities and undervaluing of involvement by staff. Conclusions  This study identified that involvement has the capacity to produce varied and significant personal impacts for involved people. Involvement can be planned and implemented in ways that increase these impacts and that mediates challenges for those involved. Key aspects to increase positive impact for service users include the value service providers attach to involvement activities, the centrality with which involvement is embedded in providers’ activities, and the capacity of involvement to influence policy, planning, service delivery, research and/or practice.