Healthcare is a service sector in flux; one which is experiencing new levels of consumerism, consumer agency and service co-creation (McDonald et al 2007). The phenomenon of patient-led support groups and the cultures of illness and knowledge they promulgate is a factor in this change (Whelan 2007). Such groups offer an ideal context in which to explore, and map out, the forms of agency undertaken by patients and carers and the types of leadership and organisation in evidence.
Those living with serious, life limiting and/or terminal conditions frequently engage in a variety of prosocial behaviours – from fundraising to mentoring newly diagnosed patients. The proposed study aims to investigate this little-understood phenomenon by exploring the motivations of patients and carers involved in leading cancer support groups. A key area of enquiry will be the relationship between this helping behaviour and the experience of illness itself. This study extends my own Doctoral (and Masters) work into a new ambitious realm with the inclusion of a broad-based, survey approach. Mixed methods will be employed via survey, observation and interview to explore, broadly and with depth, what motivates the ill to be active in helping others and what barriers they face.
In addition to academic output this project presents an excellent opportunity for knowledge exchange and impact as its aims and areas of enquiry will be shaped in consultation with the US-based, cancer charity International Myeloma Foundation (IMF).