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Ulster University’s ‘Family-centred Cancer Care’ programme of work led by a team of researchers at the Institute of Nursing and Health Research, 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.

Cancer Conversations: At diagnosis

A culmination of findings from our earlier studies has resulted in the development of an interactive, evidence-based e-learning resource which is freely available online to educate and equip health and social cancer professionals with the essential tools and strategies to support parents when communicating their cancer diagnosis and treatment with dependent children.

Cancer conversations: End of life

10 tips to help parents and carers

In collaboration with researchers from Kings College London a guide for professionals with ‘10 tips to help parents and carers with a life-limiting illness have conversations with their children’ has been produced.  This resource was informed by our systematic review, and findings from our empirical qualitative studies with parents at end of life, bereaved parents, health and social care professionals and funeral directors.

Talking, Telling and Sharing Framework: End of Life

Other resources developed include a ‘Talking, Telling and Sharing Framework’ which has two parts.

Part 1

Part 1 of the framework uses a set of questions as prompts for health and social care professionals to help open the conversation with families to assess their attitudes, beliefs and readiness about sharing a significant adult’s poor cancer prognosis with dependent children.

Part 2

Part 2 uses a 6W grid to help professionals provide guidance to families on when and how to support children when a significant adult is at end of life.

Roadmap

The resource below is an infographic that depicits the end of life experience for families, from the point of receiving the poor prognosis to the final hours of life. It highlights the key timepoints where support from health and social care professionals is instrumental.

Navigating end of life conversations

These videos can also be viewed as 7 separate videos covering key scenarios.

Other Video Resources

Lisa Strutt, Leadership Coach passionately and honestly shares her experience of cancer as a wife and mum, with the death of her husband John from pancreatic cancer.   Lisa shares how she guided her own three teenage children through this journey of grief and loss, entitled “Walking in my shoes”.

'Life after death'

Lisa Strutt, Leadership Coach passionately shares her experience of ‘Life after death’ at a TedX Talk event in 2023

Jeff Hanna 3MT Finalist Presentation

Dr Jeff Hanna was a finalist in the 3MT competition in 2019, providing an overview of his PhD research.

Research Publications

  1. Semple C, McCance T. Parents’ Experience of Cancer Who Have Young Children. Cancer Nurs. 2010;33(2). https://doi.org/10.1097/NCC.0b013e3181c024bb
  2. Semple C, McCance T. Experience of parents with head and neck cancer who are caring for young children. J Adv Nurs. 2010;66(6):1280-1290. https://doi.org/10.1097/NCC.0b013e3181c024bb10.1111/j.1365-2648.2010.05311.x
  3. ONeill, C., McCaughan, E., Ryan, A., & Semple, C. (2011). Cancer and fatherhood: an exploration into the experiences of fathers diagnosed and living with cancer when they have responsibility for young children. . Journal of Men's Health, 8(3), 235-236. https://doi.org/10.1016/j.jomh.2011.08.082
  4. Semple C, Mccaughan E. Family life when a parent is diagnosed with cancer: Impact of a psychosocial intervention for young children. Eur J Cancer Care (Engl). 2013;22(2):219-231. https://doi.org/10.1097/NCC.0b013e3181c024bb10.1111/ecc.12018
  5. O Neill, C., McCaughan, E., Ryan, A., & Semple, C. (2013). Fatherhood and cancer: a commentary on the literature. European Journal of Cancer Care, 22(2), 161-168. https://doi.org/10.1111/ecc.12021
  6. O'Neill, C., McCaughan, E., Semple, C., & Ryan, A. (2016). Fathers' experiences of living with cancer: a phenomenological study. European Journal of Cancer Care, 0, 1-10. https://doi.org/10.1111/ecc.12492
  7. Semple, C., McCaughan, E., & Smith, R. (2017). How education on managing parental cancer can improve family communication. Cancer Nursing Practice, 16(5), 34-40. https://doi.org/10.7748/cnp.2017.e1406
  8. O’Neill C, McCaughan E, Semple C, Ryan A. Fathers’ experiences of living with cancer: a phenomenological study. Eur J Cancer Care (Engl). 2018;27(1).
  9. Hanna JR, McCaughan E, Semple C. Challenges and support needs of parents and children when a parent is at end of life: A systematic review. Palliat Med. 2019;33(8):1017-1044. https://doi.org/10.1097/NCC.0b013e3181c024bb10.1177/0269216319857622
  10. O'Rourke, C., Galway, K., Semple, C., & Ballantine, J. A. (2019). Literature review and mapping of supportive services for children and young adults experiencing cancer.
  11. Semple, C., & McCaughan, E. (2019). Developing and testing a theory-driven e-learning intervention to equip healthcare professionals to communicate with parents impacted by parental cancer. European Journal of Oncology Nursing, 41, 126-134. [41]. https://doi.org/10.1016/j.ejon.2019.05.006
  12. Hanna, J., McCaughan, E., & Semple, C. (2019). Challenges and support needs of parents and children when a parent is at end of life: A systematic review. Palliative Medicine, 33(8), 1017
  13. O’Neill C, O’Neill CS, Semple C. Children Navigating Parental Cancer: Outcomes of a Psychosocial Intervention. Compr Child Adolesc Nurs. 2020;43(2):111-127.  https://doi.org/10.1097/NCC.0b013e3181c024bb10.1080/24694193.2019.1582727
  14. Hanna JR, McCaughan E, Semple C. Immediate bereavement experiences when a parent of dependent children has died of cancer: Funeral directors’ perspectives. Death Stud. Published online July 17, 2020.   https://doi.org/10.1097/NCC.0b013e3181c024bb10.1080/07481187.2020.1793433
  15. Semple C, McCaughan E, Beck ER, Hanna JR. ‘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. Palliat Med. 2021;35(5):933-942.  https://doi.org/10.1097/NCC.0b013e3181c024bb10.1177/02692163211001719
  16. McCaughan, E., Semple, C., & Hanna, J. (2021). ‘Don’t forget the children’: a qualitative study when a parent is at end of life from cancer. Supportive Care in Cancer, 29(12), 7695-7702. https://doi.org/10.1007/s00520-021-06341-3
  17. Hanna JR, McCaughan E, Beck ER, Semple C. Providing care to parents dying from cancer with dependent children: Health and social care professionals’ experience. Psychooncology. 2021;30(3).  https://doi.org/10.1097/NCC.0b013e3181c024bb10.1002/pon.5581
  18. Semple, C. J., McCaughan, E., Smith, R., & Hanna, J. R. (2021). Parent's with incurable cancer: 'Nuts and bolts' of how professionals can support parents to communicate with their dependent children. Patient education and counseling. https://doi.org/10.1016/j.pec.2021.06.032
  19. Hanna, J. R., & Semple, C. J. (2022). ‘I didn’t know what was in front of me’ – bereaved parents’ experience of adapting to life when a co-parent of dependent children has died with cancer. Psycho-oncology, 31(10), 1651-1659. https://doi.org/10.1002/pon.6010
  20. Dalton, L. J., McNiven, A., Hanna, J. R., & Rapa, E. (2022). Exploring healthcare professionals’ beliefs, experiences and opinions of family-centred conversations when a parent has a serious illness: A qualitative study. Plos one, 17(11), e0278124.
  21. Hanna, J. R., Rapa, E., Miller, M., Turner, M., & Dalton, L. J. (2022). Conversations about children when an important adult is at end of life: an audit. American Journal of Hospice and Palliative Medicine®, 39(7), 806-811.
  22. Sheehan S, Hanna JR, Drury A, McCance T, Semple CJ, O'Neill C. A Systematic Review of Educational Interventions to Equip Health and Social Care Professionals to Promote End-of-Life Supportive Care when a Parent with Dependent Children is Dying with Cancer. InSeminars in oncology nursing 2023 Jul 21 (p. 151474). https://doi.org/10.1016/j.soncn.2023.151474
  23. Dieperink KB, Semple C. Parental Cancer in Young Families-A Unique Opportunity for Family-Centered Care. InSeminars in oncology nursing 2023 Aug 19 (p. 151485). https://doi.org/10.1016/j.soncn.2023.151485

Funding

  • 2007 Action Cancer £10,000
  • 2012 Cancer Focus NI £3,000
  • 2014 HSC R&D  £83,354
  • 2015 HSC R&D £9,000
  • 2017 Ulster University £25,000
  • 2021 Ulster University ECR Impact Fund £4,875
  • 2021 ESCR Festival of Social Science £600
  • 2022 Connected £10,000
  • 2022 HEA North South Research Programme Grant €198,519
  • 2023 Connected £2,000
  • 2023 Connected £2,000
  • 2023 Martha McMenamin Memorial Scholarship £2994

In the Media

Key contributing researchers

  • Late Prof Eilis McCaughan, Professor in Cancer Care, Ulster University
  • Prof Tanya McCance, Mona Grey Professor of Nursing Research & Development, Ulster University
  • Dr Jeff Hanna, Research Associate, Ulster University
  • Dr Carla O’Neill, Lecturer / Assistant Professor School of Nursing, Midwifery & Health Systems, University College Dublin