Research findings from Ulster University on supporting families when mum or dad is at end of life from cancer23rd September 2021
When a parent has cancer, this has an immediate and devastating impact not only for the person hearing the diagnosis, but for the whole family. New research findings from the ‘Family-centred Cancer Care’ programme of work led by a team of researchers at Institute of Nursing and Health Research, Ulster University has been shared at a workshop hosted by Cancer Fund for Children at their Daisy Lodge Therapeutic Short Break Centre in Newcastle.
Phil Alexander, CEO of Cancer Fund for Children commented
“We were delighted to host a range of health and social care professionals at this event in the beautiful location of our Daisy Lodge, in Co. Down.
We welcome this new research and we look forward to the benefit it will bring to the children, young people and their families that we support through our work on a daily basis.
Cancer Fund for Children acknowledges the devastating impact that a cancer diagnosis can have on a whole family and our aim is to empower, connect and strengthen them, so they feel equipped to deal with whatever the future may hold.”
For parents in this situation with incurable cancer, sharing the difficult news with their children, while dealing with their own distress and processing their emotions is one of the most daunting tasks that a parent is likely to face. Dr Cherith Semple, Reader in Clinical Cancer Nursing, Ulster University / South Eastern Health & Social Care Trust who leads this programme of work went onto share that “informing children about their parent’s poor cancer prognosis and involving them in family communication, is helpful and protective for them, not only in the short-term but into their adulthood”. The idea of not informing the children to protect and shield them from the grave reality that death is inevitable is often considered by parents, but ‘ignorance is not bliss when a parent is end of life from cancer’.
This research makes important recommendations for health and social care professionals who are involved in providing end of life care for families in this situation. Parents often need help and guidance from health and social care professionals on how best to tell the children that ‘mum or dad won’t survive their cancer’. At the same time Dr Jeff Hanna, as one of the lead researchers, discovered as part of his PhD studies that health and social care professionals often lack the confidence and words to equip parents to communicate and support their children at end of life. Informed by their research findings, the team have developed a step-by-step ‘Talking, Telling and Sharing’ Communication Framework: At End of Life, designed to help professionals empower parents on when and how to communicate their poor prognosis with their children. Dr Hanna goes on to share that “We must ensure that parents with cancer do not relinquish the opportunity to support and parent their children through one of the most stressful and life-changing events, while they are still fit enough to do so, because they believe it is protecting them from pain or because they do not know how to start the conversation with their children.”
The team at Ulster University have also recently collaborated with researchers at Kings College London to provide a ‘Top Tips’ resource with 10 practical recommendations for healthcare teams who are supporting families at end of life with dependent children. These were shared at Cancer Fund for Children’s recent workshop but will be formally launched next month at the European Association of Palliative Care conference. They will then be available at Marie Curie’s website.