The World Cancer Day campaign, United by Unique, champions a person-centred approach to cancer care, bringing to the foreground the unique human stories behind a cancer diagnosis.
This approach echoes the views of a team of researchers from the Institute of Nursing and Health Research. The Family Centred Cancer Care programme led by Professor Cherith Semple focuses on research into supporting families who are dealing with a cancer diagnosis. Working with health and social care professionals, charities, and campaigners, the team have developed a range of resources for health and social care professionals, aimed at promoting positive coping when a significant adult has cancer with caring responsibilities for dependent children.
A key member of this team, Dr Jeff Hanna, discusses the latest research detailed in the book ‘Understanding the grief and loss experiences of carers. Researcher, practitioners and personal perspectives’. The book is a collection of chapters from different perspectives, edited by Kerry Jones and Joanna Horne. When Jeff had first view of the book, he instantly was aware that a key chapter was missing.
“Our book chapter integrates the science, the art, and the lived experience of the support needs of families at end of life. It brings together the evidence base from our qualitative studies with parents who are end-of-life, bereaved parents, health and social care professionals and funeral directors, providing an overarching view of what is going on in the family's lives."
The unique element to the book chapter, titled ‘When an adult with significant caregiving responsibilities for children is at end-of-life with cancer: a carer’s pre-bereavement and post-bereavement experiences’ is that it integrates the lived experience of campaigner Lisa Strutt who went through her own bereavement journey when her husband (John) and father of three children was at end of life with pancreatic cancer.
"Lisa eloquently describes her lived experience in the chapter, bringing the research findings to life. As the chapter progresses it maps the research to Lisa’s experience from the moment of receiving the poor prognosis till the first year after John’s death.”
The application of research to real world person-centred care is the theme of Jeff’s career. A Lecturer in Clinical Cancer Nursing, Jeff completed his PhD in the School of Nursing at Ulster University in 2020. After a period of time in research positions, Jeff went back to the classroom and completed the MSc in Professional Nursing. As a registered nurse, he now splits his time between the Ulster University and in a clinical role with the South Eastern Health and Social Care Trust.
“I very much had the belief that to make a difference, it is important to be in practice. I aspired to become a registered nurse working at that ground grassroots level with health and social care professionals.”
“This allows me to be able to bring my research back into the clinical environment, to influence colleagues and vice versa, and to bring my experiences of working in the clinical context to inform my research.”
It is from this perspective that Jeff was keen to champion the carer who is navigating many of these end-of-life conversations with family members, whilst also going through their bereavement process.
“We want to get the message across to health and social care professionals and support services that it is important not to forget the carer throughout that end of life and into the post-bereavement period.”
Research is always evolving so what is next for the Family Centre Cancer Care programme?
“We are very mindful of the diverse and changing population that we live in. We are hoping to explore the experiences and support needs of families that are often underrepresented in research, specifically those families who are living in deprivation in communities across the UK.”
"Ideally, we would like to be able to adapt our current resources that are available for health and social care professionals so that carers can then work through those whenever they are at home with their children throughout that end of life period.”