My experiences of being a service user co-researcher on the Remote and Rural project
Christine Venning, Service User Research Partnership, Breast Cancer Care
Since my mother died in 1983 I had been attending a family history breast clinic at Stobhill Hospital every six months. Over the years I had observed this clinic become very efficient and effective and a place where a great deal of care was shown to the women who attended over the years it changed from the woman (for that was all I ever saw) being sent home and results would be sent to you to them being in a position to give you your results on the afternoon – even if it meant waiting until after 5.00pm. In those intervening years a number of my mum’s relatives experienced breast cancer and a cousin did not survive her treatment. I had quite a bit of experience of the diverse experiences people had when diagnosed with breast cancer.
A week before my appointment in 2007 I realised I had a problem. I was just about to move house and I was also going to London to join my son who had been given VIP tickets for a Rolling Stones concert, there was a lot going on. It wasn’t a lump that I could feel but a strange shaped breast. I said nothing and had a good time in London with my son, came home, signed the paperwork for my house and went to my appointment on the Thursday afternoon.
Seamlessly my tests kicked in and within a week I knew that I had DCIS and was negotiating with Mr Hansell for a week’s surgery extension so I could move into my new house.
I am relating this detail as I now realise how lucky I was to have been part of Mr Hansell’s family history clinic and now an active patient in his breast clinic. Conversations with many other women have made me realise that not everyone has the same experience.
I was discouraged by my organisation from going back to work. It was losing its funding and my task on return would have been to fight for posts and then make people redundant. At the end of the radiotherapy I was not strong enough to do that and I know I had chemo brain! I discovered after a couple of years R&R that I was not ready to retire and saw in Breast Cancer Care( News an advert for Service User Representatives to be part of the Research Team at Breast Cancer Care – the skills they were looking for in relation to project monitoring and evaluation and designing proposals I had – I wasn’t so sure about research and research methods – I’d done one year at University in research and research methods but that had been in 1985. The thought of the statistics worried me.
I applied, had a very tough telephone interview and was informed a couple of weeks later that I had been accepted to be a member of the group. It met in the Spring and Autumn in London and had a teleconference mid-summer.
The Service User Research Partnership (SURP) had been meeting for some years but had recently spent some time and energy looking at their role and their place within the charity. It was a good time to join the group. They paid attention to our induction and linked us with a buddy. It was a warm, well organised and welcoming. I enjoyed the meetings and the work which we undertook and attended for two years and then had some health/mobility problems un-related to cancer and asked for leave of absence.
The Remote and Rural Study was discussed at the last meeting I attended and seemed to me to be a worthwhile piece of research. I can’t remember what happened between then and being asked if I would assist with telephone interviews………and the rest is history! Gill Hubbard and Karen Scanlon spoke of their belief that, if the interviews were carried out by people who had experienced a breast cancer diagnosis, the information we collected would perhaps be deeper.
For me, it seemed an opportunity to do something ‘applied’ and would give me an opportunity to work with AlisonWalker and Gill and Karen and Breast Cancer Care Scottish office with whom I had had little contact. It was clearly a worthwhilepiece of work and a first with Service Users carrying out the interviews.
I agreed to conduct the semi-structured interviews and then (somehow!) found myself designing questionnaires, re-designing them on advice from Gill; having training in recording and analysing the data from the semi-structured interviews and talking about the project with Alison on a regular basis.
The first phone call was nerve wracking – but once I started to talk to the participantsI knew that the fact that I had similar experiences to them reduced barriers to an open conversation. The women interviewed were generous of their time and spoke openly of their own experiences of breast cancer.
After a few interviews I realised that my own experience of diagnosis, surgery, chemotherapy, radiotherapy and on-going hormone treatment in a tightly knit, well organised, caring breast care team had been a privilege, which also impacted on my family.Not everyone diagnosed has this quality of experience.
Much of what was involved in the Remote and Rural research was challenging and stimulating, there were elements of embarrassment and frustration – I struggled to record the calls and didn’t realise I hadn’t got the microphone for the recorder. My skills for moving large pieces of data were non-existent – I still shudder when I hear the word drop-box and I haven’t got the hang of it yet.
I found the length of time between our meetings frustrating but once we met again I becamere-enthused and glad to be involved in this piece of research. I was on a huge learning curve.
Of course there are things I would want to do differently should I be involved again.
All cancer patients living in remote and rural areas require tailored support in the organising of their diagnosis, treatment and support. This would address the additional difficulties which they experienced because of long distance travel and being away from the support of family and friends. I am looking forward to being involved in presentations and discussions which address these additional difficulties.
However, this is probably true for very many people who live in remote and rural areas when they arefacedwith a chronic and acute medical diagnosis – I can’t get involved in every specialism but it has made me realise that it would be beneficial if health professionals, voluntary organisations and charities and transport providers worked together to address the additional burden that people living in remote and rural areas face as they confront on-going treatment.
If I were to be involved in further research I would want to have done more reading and looking at the literature available. Although there appears to be very little literature on the needs of those in remote and rural parts of the UK. The research carried out by Angela Verde and colleagues in South Australia was a an inspiring coherent piece, designed and delivered by a woman who knew the remote areas of South Australia well. Angela Verde had experienced breast cancer herself. There were similarities and differences in the needs of the participants in both Australia and Scotland despite their health care system being predominantly paid for via health insurance.
Initially I worried that our qualitative interviews were only with ten women and I wondered about how representative they were, as we started to code the information I wasrelieved our study was not one of hundreds of participants – this coding required a great deal of concentration and there may be additional techniques we could learn to assist with this should we be involved in the future.
I found it particularly frustrating that we worked in bursts – to cope with everyone’s other commitments – we were all involved in more than one ‘project’ during the period of the RAR study and between holidays, sickness and other activities it was a long time between bursts of activity. I was also aware that coaching us was an additional task for Gill and Karen.
Although we knew the deadlines for the research funders we were unaware of the amount of time each part of the research would take– initially arranging interview times with participants took much longer than we had anticipated. I have previously mentioned my own in-adequacies in dealing with large documents and I should own up that I am also a genuine technophobe so the whole business of recording and then transcribing even the small amounts I transcribed was quite stressful – for me.
I had previous experience of devising funding applications and then setting up monitoring and evaluation as projects ideas became operational – I enjoyed devising and revising the questions we asked. It was a great privilege to speak with our interviewees, they shared opening and honestly and some even offered to become involved in peer support work. It was fascinating analysing the issues once we had done the coding. By this time we knew our deadline was very close – if I was doing it again I would definitely want to have more time for debate and discussion with colleagues at this stage.
This has been a ‘pilot’ for SURP; I am looking forward to hearing the views of my colleagues and Breast Cancer Care as a result of this unique collaboration for them.
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