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

Abstract

Background Service user involvement is embedded in the United KingdomÕs 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.

How to empower patients, and involve the public

“…This can help to reshape the patient's perception of their diagnosis in a positive way and help them separate the pathology from their identity (Cotterell et at 2010). It can reduce the sense of isolation while boosting hope, 'confidence,' 'belonging,' inspiration and the feeling of making a positive contribution.…”

“…It can reduce the sense of isolation while boosting hope, 'confidence,' 'belonging,' inspiration and the feeling of making a positive contribution. Some patients also gain from the positive role modelling of fellow cancer survivors (Cotterell et at 2010) and the experience of illness of one patient can help others in a similar situation (Mockford et al 2012).…”

“…An added complication for PPI is how to ensure genuine representation for all rather than particular sections of society (Bradshaw 2008, Martin 2009) and how to identify, unravel and resolve any competing agendas (Martin 2009). PPI is also inhibited if nurses lack the skills and preparedness to interact with patients from a position of equality (Brooks 2008) and, in effect, if nurses fail to engage with the process (Cotterell et al 2010).…”

“…To this end statutory obligations have been placed on NHS Trusts to ensure PPI in all strategic decision making (Cotterell et at 2010). This is seen as a way to improve the quality of services (Martin 2009) by 'redrawing' (Tritter and McCallum 2006) or 'transforming' (Tritter andMcCallum 2006, Fudge, Wolfe andMckevitt 2008) lay-professional power relations.…”

“…As such they are underpinned by consumer watchdog initiatives such as Patient advice and liaison services (DoH 2002). PPI, also known as 'user involvement' (Fudge, Wolfe and Mckevitt 2008) and 'service user involvement' (Cotterell et at 2010) is an ill-defined and contested concept that lacks an established theory base and a common set of meanings.…”