25 Feb Talking about cancer: The Advocacy and Cancer Study
In this post, Patty Doran, a PhD researcher from the University of Manchester, talks about the Advocacy and Cancer study she has completed with support from Cancer Older People and Advocacy partners.
The Advocacy and Cancer Study aimed to gain personal perspectives from older cancer patients and their carers about whether they feel that they were involved in treatment decisions with their medical staff, and to explore if access to social support, provided by both family and independent advocates, impacts on the experiences of older cancer patients. The study was completed with support and collaboration from Macmillan Cancer Support and Cancer, Older People and Advocacy delivery partners. I carried out a set of interviews as part of the research and now have the perspectives of 11 people, both patients and carers, on the impact of social support and advocacy on their experience of cancer. It was a privilege to be able to talk to people, from a variety of backgrounds and circumstances, about their experiences.
From my interviews, I heard from older cancer patients about the isolation that cancer can bring. One older man told me that ‘there is nowhere that anybody has pointed me or my wife to where we can get support with me having cancer, or even for my wife just to get her own support’. In another interview with an older women who lives on her own, I was told ‘you do tend to live in a world of your own, and there’s no one there to sort of know how you really feel’. This obviously shouldn’t be the case. Awareness raising and education is key to bringing about a social change in the way people view and experience cancer. Through the process of research, evidence gathering, policy development and service change can we improve the lives of people living with cancer.
In early November I presented a poster about my Advocacy and Cancer Study at the Methods@Manchester Methods Fair. My poster included links to some of the initial themes that have been identified through my study. One of the most interesting findings is the lack of perceived treatment options that the older people are experiencing. One older woman told me ‘even until today I still do not know if there were any other [treatment] options’. This perception has been echoed by professional staff I have spoken to in the course of my research, both hospital based staff and professionals based in advocacy services. There is a (justified) sense that cancer services in the UK are delivered to a high standard, and that all patients are offered the best possible treatment. However, if this is the case, why are older people not getting the same levels of treatment as younger people? We know that the difference isn’t explained just by health issues, so there must be something else.
I believe that social support has an important role to play in the journey of the older cancer patient. As one of my interview participants said, ‘[my advocate] who was coming with me, she came with me regularly to chemo and it was brilliant … she was so much company, you know, and she put me on the taxi then to bring me home and she’s brilliant, helped an awful lot’. Another participant said that they needed ‘somebody that I can talk to that can point me in the right direction, which is when the advocate comes I can say what I want to. I mean he can tell me which way to go – I’m not sure which way to go’.
World Cancer Day, every year on the 4th February, is about awareness and education. I am a long-standing advocate of talking about cancer and believe that the more people learn about cancer the higher the likelihood of early diagnosis and better treatment outcomes. Also, education about the social support needs of people living with cancer will bring about service improvement and better experiences for patients, their families and carers. I still have many questions about social support, older people and cancer. As yet, it may not be clear what the answers are to all my questions, however my research efforts are beginning to produce results.
It may be that for now my results will just stimulate more questions, however I am hopeful that I am slowly working my way to producing my own story of new knowledge and understanding. I am grateful to all the participants who spoke to me, and to the staff from the advocacy services that made it possible. My final participant quote, I believe, sums up perfectly the need to talk more about cancer.
‘I don’t believe in hiding cancer because the more people talk about it the more things may get done … To get it out in the open so people are not scared about it, and then they will turn round and say, oh, I didn’t know you could do this and do that. So the more people are proactive then hopefully something will be done about it.’