Bereavement support after the death of a child with cancer: implications for practice
Keywords:
bereavement, death of a child, cancer, general practitionerAbstract
AbstractThe effects of bereavement are unique and support must be individually tailored. The role of the general practitioner (GP) in paediatric cancer palliative care is wide-ranging and challenging, yet little is known about offered bereavement support in this context. We carried out an in-depth secondary analysis of text relating to bereavement support from a semi-structured interview study exploring GPs’ and parents’ experiences. Findings highlight the importance of early GP-initiated face-to-face contact with parents, exploring opportunities for innovative practice and maintaining close collaboration with hospital-based teams. A co-ordinated, equitable and sustainable approach to bereavement support may help address identified GP knowledge deficits and time-pressures.
References
Aoun, S. M., Breen, L. J., Howting, D. A., Rumbold, B., McNamara, B., & Hegney, D. (2015). Who needs bereavement support? A population based survey of bereavement risk and upport need. PLoS ONE, 10(3), e0121101. doi: 10.1371/journal.pone.0121101
Balk, D. E. (2005). Scholarship, students, and practitioners: Bringing scholarship into the expectations of practitioners. Death Studies, 29(2), 123–144. doi: 10.1080/07481180590906147
Blackburn, P., & Dwyer, K. (2017). A bereavement common assessment framework in palliative care: Informing practice, transforming care. American Journal of Hospice and Palliative Medicine, 34(7), 677–684. doi: 10.1177/1049909116647403
Boelen, P. A., & Smid, G. E. (2017). Disturbed grief: Prolonged grief disorder and persistent complex bereavement disorder. BMJ, 357, j2016. doi: 10.1136/bmj.j2016
Breen, L. J., Aoun, S. M., O'Connor, M., & Rumbold, B. (2014). Bridging the gaps in palliative care bereavement support: An international perspective. Death Studies, 38(1), 54–61. doi: 10.1080/07481187.2012.725451
Breen, L. J., Fernandez, M., O'Connor, M., & Pember, A. J. (2013). The preparation of graduate health professionals for working with bereaved clients: An Australian perspective. Omega: Journal of Death and Dying, 66(4), 313–332. doi: 10.2190/OM.66.4.c
Breen, L. J., & O'Connor, M. (2011). Family and social networks after bereavement: Experiences of support, change, and isolation. Journal of Family Therapy, 33, 98–120. doi: 10.1111/j.1467-6427.2010.00495.x
Cancer Research UK. (2019). Children’s cancer statistics. Retrieved from www.cancerresearchuk.org/health-professional/cancer-statistics/childrens-cancers?_ga=2.250435334.1270345266.1568203021-1182035121.1515744698#heading-One [accessed 12 January 2020].
Charlton, R., & Dolman, E. (1995). Bereavement: A protocol for primary care. British Journal of General Practice, 45(397), 427–430.
Child Bereavement UK. (2017). Working with bereaved families. Retrieved from https://childbereavementuk.org/for-professionals/working-with-bereaved-families [accessed 12 January 2020].
Connor, S. R., Downing, J., & Marston, R. N. (2017). Estimating the global need for palliative care for children: A cross-sectional analysis. Journal of Pain and Symptom Management, 53(2), 171–177. doi: 10.1016/j.jpainsymman.2016.08.020
Corbin, J., & Strauss, A. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory, 3rd ed., (pp. 65–228). London: Sage.
Dias, N., Brandon, D., Haase, J. E., & Tanabe, P. (2018). Bereaved parents’ health status during the first 6 months after their child’s death. American Journal of Hospice and Palliative Medicine, 35(6), 829–839. doi: 10.1177/1049909117744188
Dickinson, G. E. (2007). End-of-life and palliative care issues in medical and nursing schools in the United States. Death Studies, 31(8), 713–726. doi: 10.1080/07481180701490602
Dickinson, G. E. (2012). Twenty-first century end-of-life issues in selected US professional schools. Illness, Crisis & Loss, 20(1), 19–32. doi: 10.2190/IL.20.1.c
Dickinson, G. E., & Field, D. (2002). Teaching end-of-life issues: Current status in United Kingdom and United States medical schools. American Journal of Hospice and Palliative Medicine, 19(3), 181–186. doi: 10.1177/104990910201900309
Dyregrov, K. (2004). Bereaved parents’ experience of research participation. Social Science & Medicine, 58(2), 391–400. doi: 10.1016/S0277-9536(03)00205-3
Friedrichsdorf, S. J., Postier, A., Dreyfus, J., Osenga, K., Sencer, S., & Wolfe, J. (2015). Improved quality of life at end of life related to home-based palliative care in children with cancer. Journal of Palliative Medicine, 18(2), 143–150. doi: 10.1089/jpm.2014.0285
Haines, A., & Booroff, A. (1986). Terminal care at home: Perspective from general practice. British Medical Journal (Clinical Research Edition), 292(6527), 1051–1053. doi: 10.1136/bmj.292.6527.1051
Harper, M., O’Connor, R. C., & O’Carroll, R. E. (2014). Factors associated with grief and depression following the loss of a child: A multivariate analysis. Psychology, health & medicine, 19(3), 247–252. doi: 10.1080/13548506.2013.811274
Harris, T., & Kendrick, T. (1998). Bereavement care in general practice: A survey in South Thames Health Region. British Journal of General Practice, 48(434), 1560–1564.
Hynson, J. L., Aroni, R., Bauld, C., & Sawyer, S. M. (2006). Research with bereaved parents: A question of how not why. Palliative Medicine, 20(8), 80–811. doi: 10.1177/0269216306072349
Jalmsell, L., Kreicsbrgs, U., Onelov, E., Steineck, G., & Henter, J.-I. (2006). Symptoms affecting children with malignancies during the last month of life: A nationwide follow-up. Pediatrics, 117(4), 1314–1320. doi: 10.1542/peds.2005-1479
James, L., & Johnson, B. (1997). The needs of pediatric oncology patients during the palliative care phase. Journal of Pediatric Oncology Nursing, 14(2), 83–95. doi: 10.1177/104345429701400207
Knapp, C., Woodworth, L., Wright, M., Downing, J., Drake, R., Fowler-Kerry, S., & Marston, J. (2011). Pediatric palliative care provision around the world: A systematic review. Pediatric blood & cancer, 57(3), 361–368. doi: 10.1002/pbc.23100
Kreicbergs, U. C., Lannen, P., Onelov, E., & Wolfe, J. (2007). Parental grief after losing a child to cancer: Impact of professional and social support on long-term outcomes. Journal of Clinical Oncology, 22(25), 3307–3312. doi: 10.1200/JCO.2006.10.0743
Kreicsberg, U., Valdimarsdottir, U., Onelov, E., Bjork, O., Steineck, G., & Henter, J.-L. (2005). Care-related distress: A nationwide study of parents who lost their child to cancer. Journal of Clinical Oncology, 23(36), 9162–9171. doi: 10.1200/JCO.2005.08.557
Ljungman, L., Hovén, E., Ljungman, G., Cernvall, M., & von Essen, L. (2015). Does time heal all wounds? A longitudinal study of the development of posttraumatic stress symptoms in parents of survivors of childhood cancer and bereaved parents. Psycho-Oncology, 24(12), 1792–1798. doi: 10.1002/pon.3856
Long-Sutehall, T., Sque, M., & Addington-Hall, J. (2011). Secondary analysis of qualitative data: a valuable method for exploring sensitive issues with an elusive population? Journal of Research in Nursing, 16(4), 335–344. doi: 10.1177/1744987110381553
Low, J., Cloherty, M., Wilkinson, S., Barclay, S., & Hibble, A. (2006). A UK-wide postal survey to evaluate palliative care education amongst General Practice Registrars. Palliative Medicine, 20(4), 46–469. doi: 10.1191/0269216306pm1140oa
Main, J. (2000). Improving management of bereavement in general practice based on a survey of recently bereaved subjects in a single general practice. British Journal of General Practice, 50(460), 863–866.
McCarthy, M. C., Clarke, N. E., Ting, C. L., Conroy, E., Anderson, V. A., & Heath, J. A. (2010). Prevalence and predicators of parental grief and depression after the death of a child from cancer. Journal of Palliative Medicine, 13(11), 1321–1326. doi: 10.1089/jpm.2010.0037
Monterosso, L., Kristjanson, L. J., & Phillips, M. B. (2009). The supportive and palliative care needs of Australian families of children who die from cancer. Palliative Medicine, 23(6), 526–536. doi: 10.1177/0269216309104060
Morris, S., Fletcher, K., & Goldstein, R. (2019). The grief of parents after the death of a young child. Journal of Clinical Psychology in Medical Settings, 26(3), 321–338. doi: 10.1007/s10880-018-9590-7
Nagraj, S., & Barclay, S. (2011). Bereavement care in primary care: A systematic literature review and narrative synthesis. British Journal of General Practice, 61(582), e42–e48. doi: 10.3399/bjgp11X549009
National Collaborating Centre for Cancer. (2005). Improving outcomes in children and young people with cancer. The manual. London: National Institute for Clinical Health and Excellence.
National Institute for Clinical Excellence. (2004). Guidance on cancer services: Improving supportive and palliative care for adults with cancer. The manual. London: National Institute of Clinical Excellence.
National Institute for Health and Care Excellence. (2016). End of life care for infants, children and young people with life-limiting conditions: Planning and management. (NICE guideline NG61). Retrieved from www.nice.org.uk/guidance/NG61 [accessed 14 January 2020].
National Partnership for Palliative and End of Life Care (NPPELC). (2015). Ambitions for palliative and end of life care: a national framework for local action: 2015–2020. Retrieved from http://endoflifecareambitions.org.uk [accessed 14 January 2020].
Neilson, S. J., Gibson, F., & Greenfield, S. M. (2015). Pediatric oncology palliative care: Experiences of general practitioners and bereaved parents. Journal of Palliative Care and Medicine, 2(5), 214.
Neilson, S. J., Gibson, F., Jeffares, S., & Greenfield, S. (2017). GPs and paediatric oncology palliative care: A Q Methodological study. (2017). British Medical Journal Supportive and Palliative Care, Published Online First: 21 April 2017. doi: 10.1136/bmjspcare-2015-000852.
O’Connor, M., & Breen, L. J. (2014). General practitioners’ experiences of bereavement care and their educational support needs: A qualitative study. BMC Medical Education, 1(14), 1.
Royal College of General Practitioners. (2017). Palliative and end of life toolkit. Retrieved from www.rcgp.org.uk/clinical-and-research/toolkits/palliative-and-end-of-life-care-toolkit.asp [accessed 14 January 2020].
Sealey, M., O’Connor, M., Aoun, S. M., & Breen, L. J. (2015). Exploring barriers to assessment of bereavement risk in palliative care: Perspectives of key stakeholders. BMC Palliative Care, 14(1), 49. doi: 10.1186/s12904-015-0046-7
Selman, L. E., Brighton, L. J., Robinson, V., George, R., Khan, S. A., Burman, R., & Koffman, J. (2017). Primary care physicians’ educational needs and learning preferences in end of life care: A focus group study in the UK. BMC Palliative Care, 16(1), 17. doi: 10.1186/s12904-017-0191-2
Snaman, J. M., Kaye, E. C., Levine, D. R., Cochran, B., Wilcox, R., Sparrow, C. K., & Baker, J. N. (2017). Empowering bereaved parents through the development of a comprehensive bereavement program. Journal of pain and symptom management, 53(4), 767–775. doi: 10.1016/j.jpainsymman.2016.10.359
Stevenson, M., Achille, M., Liben, S., Proulx, M. C., Humbert, N., Petti, A., … Cohen, S. R. (2017). Understanding how bereaved parents cope with their grief to inform the services provided to them. Qualitative Health Research, 5(27), 649–664. doi: 10.1177/1049732315622189
Vickers, J., Thompson, A., Collins, G. S., Childs, M., & Hain, R. (2007). Place and provision of palliative care for children with progressive cancer: A study by the paediatric oncology nurses’ forum/United Kingdom Children’s Cancer Study Group Palliative Care Working Group. Journal of Clin Oncology, 28(25), 4472–4476. doi: 10.1200/JCO.2007.12.0493
Walker, S., Gibbins, J., Paes, P., Barclay, S., Adams, A., Chandratilake, M., & Wee, B. (2018). Preparing future doctors for palliative care: Views of course organisers. British Medical Journal Supportive & Palliative Care, 8(3), 299–306. doi: 10.1136/bmjspcare-2017-001319
Woof, W. R., & Carter, Y. H. (1997). The grieving adult and the general practitioner: A literature review in two parts (Part 2). British Journal of General Practice, 47(421), 509–514.
