Dr Ceri Phelps reflects on 20 years of research on World Cancer Day
04.02.2021
Today on World Cancer Day (February 4), UWTSD’s Director of Psychology & Counselling and registered Health Psychologist Dr Ceri Phelps reflects on twenty years of research seeking to support individuals affected by a cancer diagnosis in Wales.
Twenty years ago in 2001 I started my journey into psychosocial oncology research, with my Welsh Government funded PhD exploring how best to support women in Wales going through genetic assessment for familial breast cancer risk[1]. Since then I have been privileged to carry out research with a range cancer populations: women with breast cancer, young people affected by cancer, those living with incurable cancer, and men with prostate cancer. The passion that was ignited in me over those initial three or so years has stayed with me ever since, so here I take a moment to reflect upon the lessons learned and values that I have always sought to embrace since then.
Firstly, I have been lucky that pretty much every project I have been involved in over these two decades has involved me meeting the individuals who are the focus of my research. Whether this be through focus groups, interviews, or working with patient representatives on projects, I quickly learned that the biggest expert in the room when discussing the impact of cancer on individuals’ lives is, of course, the individual themselves.
Taking time to hear – and really listen – to their stories has not only been a vital element of the success of much of my research, but has always left me with an incredible sense of privilege and gratitude that so many are so willing to share their personal experiences with me, often in the hope that this will help others in the future. The feeling of responsibility that comes from knowing that your research participants are sharing their fears, concerns, and hopes with you has always driven me to ensure the integrity of my research and the messages that are delivered through it.
This particularly resonated with me when supervising research with a then breast cancer nurse, exploring the information and support needs of women living with incurable secondary breast cancer[2]. To have been able to have helped shape this research, to see the nurse in question not only become Wales’ first secondary breast cancer nurse specialist but to recently receive a BEM honour from the Queen for her work to improve secondary breast cancer support has been an incredible experience, but also reminds me that we need to ensure the momentum is not lost once these changes start to occur.
With that in mind, the second value that I have learned is that sometimes you learn the most from projects that don’t run smoothly. Timely reminders along the way to not forget the importance of the personal connection during recruitment for a project exploring the potential benefit of an eco-therapy based intervention led to difficulties recruiting, until myself and members of the project team pitched up to a support group with a sack of compost, tray of flowers, and bags of enthusiasm[3].
On a different project a world away from flowers and nature, the development of a virtual reality avatar based counselling world for young people affected by cancer involved so many intricate issues around not only the design but the extensive ethical considerations of such a unique project – and one that we were commended for addressing so well by the NHS ethics committee - that the project ran out of funding before we could really recruit any young people. This project also reminded us of the importance of working with key clinicians to help endorse the potential value of such projects[4], recognising the faith and trust that many patients have in the healthcare professionals involved in their care.
This brings me onto my third value, that of truly embracing the spirit of collaboration, and of recognising the genuine importance of multi-disciplinary approaches to research. From those very first days of my PhD, sat in meeting rooms at the Heath Hospital in Cardiff, nervously explaining my project to genetic counsellors, consultants, service managers and senior researchers, it was clear that being able to draw upon the support and expertise of more knowledgeable professionals, and to be willing to listen and learn from them, is critical in the evolution of any successful research project working with vulnerable patient populations. Moreover, to be prepared to offer something back, to demonstrate your commitment to teamwork and knowledge exchange, is a value that has been deeply instilled in me ever since, across all of my professional roles.
I still remember the dry mouth and pounding heart when having to present one of my early PhD studies to a room full of genetics specialists during the regular lunchtime meetings – why would they be interested in my little focus group study when they are doing really important stuff like searching for genetic mutations, or helping patients make really important decisions about surgery or genetic testing? But they were and they asked testing questions, and they were willing to engage in conversations that developed my knowledge so much, and slowly, with the support of my incredible academic supervisors and peers, my confidence grew.
So here I am now, twenty years later, thinking about World Cancer Day 2021. The COVID-19 pandemic has added additional challenges to cancer populations in Wales and beyond, and it has made me think about the potential value of some of these early coping interventions to the current population. I now have my own funded PhD student who is developing the same passion and values espoused here, and whom with support from Tenovus Cancer Care, is keen to identify through her research how best to support those living with cancer in Wales during this current time. So we have perhaps come full circle, and I can only try and continue to share the passion, the lessons and the values I have learned with her and my other students, to supervise and support in the gently challenging way that I was, and to continue to engage in dialogue with NHS and cancer support organisations, in the hope that we can continue to carry out research in the field of psychosocial oncology that is important, genuine, and truly collaborative.
Note to Editor
[1] Phelps C., Bennett P; Hood K., Brain K., & Murray A. (2013). A self-help coping intervention can reduce anxiety and avoidant health behaviours whilst waiting for cancer genetic risk information: results of a phase III randomised trial. Psycho-Oncology, 22(4), 837-834
[2] Baker, A.M. & Phelps, C. (2019) A changing identity: A focus group study of the experiences of women diagnosed with secondary breast cancer. Cancer Nursing Practice,18,2.
[3] Phelps, C., Butler, C., Cousins, A., & Hughes, C. (2015). Sowing the seeds or failing to blossom? A feasibility study of a simple ecotherapy-based intervention in women affected by breast cancer. Ecancermedicalscience, 9, 602. http://doi.org/10.3332/ecancer.2015.602
[4] Phelps, C., Minou, M., Baker, A., Hughes, C., French, H., Hawkins, W., Leeuwenberg, A., Crabtree, R. and Hutchings, P. B. (2017). Necessary but not sufficient? Engaging young people in the development of an avatar-based online intervention designed to provide psychosocial support to young people affected by their own or a family member's cancer diagnosis. Health Expectations, 20: 459–470. doi:10.1111/hex.12473
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