14 Jul Patty Doran: research and evidence to support advocacy services
Evidence of the impact of small, community-based services is often hard to convincingly portray. We can tell stories about the people who have used our services. These stories generally generate positive responses about how “obviously” a good service is being provided. However, when it comes to securing on-going funding for services, more robust evidence is required.
This is the situation I was in a few years back when I was a Macmillan Information and Support Service manager of an innovative service based in Manchester’s community libraries. We were lucky, after 3 years of Macmillan funding, I was able to secure another 3 years of funding from The Big Lottery. My experience of running the service, and the endless task of proving its worth, spurred me on to complete a MSc in Social Change at The University of Manchester. I enjoyed the experience of returning to study, and now I am researching full-time towards a PhD focussing on the social support needs of older cancer patients.
Through my research I have maintained contact with Macmillan and established new links with OPAAL and the Cancer, Older People and Advocacy project. The work being carried out by the Cancer, Older People and Advocacy delivery partners directly parallels with my theories about the support needs of older cancer patients. The stories that are shared through this blog highlight the important and valued role that the cancer advocates are playing.
I am now in the position to support the evaluation of the Cancer, Older People and Advocacy project by conducting independent research into the impact of advocates on the experiences of older cancer patients. I am hoping to travel to several of the Cancer, Older People and Advocacy delivery services to carry out interviews with older cancer patients who have used the services, hear their stories, and draw together an analysis of the impact of advocacy.
So far, I have interviewed two people who have used the ICANN service. Recruitment of participants for this research involves the support of the advocacy organisations involved, and I am very grateful for the support from Janet Cullingford from ICANN for her support in arranging the first two interviews. Recruitment is dependent on the organisations’ advocates and workers, and requires negotiation and in some cases persuasion on their behalf to get participants on board. However, the potential benefits are high. Hearing the stories of older people affected by cancer who have used an advocacy service provides a contrast to the more common ‘expert patients’ used in many other qualitative studies.
Listening to the stories of older cancer patients provides important insight into personal experiences of having cancer treatment. From these experiences we can learn about how the principals of shared decision-making are applied in treating cancer, if indeed they are. Initial findings suggest that from the patient’s perspective there are limited decisions to be made, and health professionals are trusted and relied upon to make the treatment decisions.
Support during the cancer journey is highly appreciated, especially post-treatment. One older person said that “without [my advocate’s] support I don’t think I would have got through it”.
However, more interviews are needed to explore these initial findings further. I am now hoping to recruit several more older cancer patients to be interviewed. For more information, contact Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester, [email protected]