Research findings from Ulster University on supporting families when mum or dad is at end of life from cancer highlights ‘don’t forget the children’…

When a parent with young children is diagnosed with incurable 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 the Institute of Nursing and Health Research, Ulster University has been addressing how parents often need advice and support to navigate these unchartered waters. Health and social care professionals are well placed to empower parents to know how best to communicate with their children, as it can feel impossible to find the words.

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 shares 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 deferring or 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 at end of life from cancer’. Parents often worry that having these conversations with their children will not only be too upsetting for the children but make them too emotional. But research shows us that to cry in front of children helps them understand that there is something serious going on and it gives them the permission to be upset themselves.

Parents should be encouraged by health and social care professionals that there is ‘a window of opportunity’ for them to share this difficult news, which can avoid crisis management when mum or dad’s death becomes imminent, in the final weeks and days of life . While the initial sharing of the news will be upsetting for the children, one or both parents can ‘parent’ and support their children through this experience and facilitate creating important memories together throughout the end of life experience. Equipping parents with this opportunity to comfort and protect their children before the death, can facilitate a better bereavement experience for the children. If children aren’t involved and don’t know what is going on, they can feel confused and excluded, leading to increased anxiety. When they eventually find out, children can feel cheated and lied to.

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. 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. 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. This can be found at https://doi.org/10.1016/j.pec.2021.06.032. 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 are available on Marie Curie’s website at https://www.mariecurie.org.uk/globalassets/media/documents/how-we-can-help/pckz/e420b_10toptips_1oct21.pdf.

Notes:

This new body of research has recently been published in 6 peer-review publications.[1] Hanna, J. R., McCaughan, E., & Semple, C. J. (2019). Challenges and support needs of parents and children when a parent is at end of life: A systematic review. Palliative medicine33(8), 1017-1044.

[2] Hanna, J. R., McCaughan, E., Beck, E. R., & Semple, C. J. (2020). Providing care to parents dying from cancer with dependent children: Health and social care professionals’ experience. Psycho‐Oncology30(3), 331-339.

[3] Hanna, J. R., McCaughan, E., & Semple, C. J. (2020). Experiences of the immediate bereavement period when a parent of dependent children has died of cancer: funeral directors’ perspective. Death Studies. 

[4] Semple, C. J., McCaughan, E., Beck, E. R., & Hanna, J. R. (2021). ‘Living in parallel worlds’–bereaved parents’ experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study. Palliative Medicine35(5), 933-942.

[5] McCaughan, E., Semple C.J., & Hanna, J.R. (2021) ‘Don’t forget the children’: A qualitative study when a parent of dependent children is at end of life. Journal of Supportive Care in Cancer.

[6] Semple, C.J., McCaughan, E., Smith, R., & Hanna, J.R. (2021) Parents with incurable cancer: ‘Nuts and bolts’ of how professionals can support parents to communicate with their dependent children. Patient Education and Counseling.