Consulting parents bereaved by childhood cancer: A qualitative study to improve bereavement services

References

• Aho, A. L., Paavilainen, E., & Kaunonen, M. (2012). Mothers’ experiences of peer support via an internet discussion forum after the death of a child. Scandinavian Journal of Caring Sciences, 26(3), 417–426. https://doi.org/10.1111/j.1471-6712.2011.00929.x
   PubMed Web of Science ®Google Scholar
• Alam, R., Barrera, M., D'Agostino, N., Nicholas, D. B., & Schneiderman, G. (2012). Bereavement experiences of mothers and fathers over time after the death of a child due to cancer. Death Studies, 36(1), 1–22. https://doi.org/10.1080/07481187.2011.553312
   PubMed Web of Science ®Google Scholar
• Australian Childhood Cancer Registry (2017). A summary of childhood cancer statistics in Australia, 1983–2017 (pp. 1–3). Cancer Council. https://cancerqld.org.au/research/viertel-cancer-research-centre/childhood-cancer/australian-childhood-cancer-registry/
   Google Scholar
• Barrera, M., O'Connor, K., D'Agostino, N. M., Spencer, L., Nicholas, D., Jovcevska, V., Tallet, S., & Schneiderman, G. (2009). Early parental adjustment and bereavement after childhood cancer death. Death Studies, 33(6), 497–520. https://doi.org/10.1080/07481180902961153
   PubMed Web of Science ®Google Scholar
• Borasino, S., Morrison, W., Silberman, J., Nelson, R. M., & Feudtner, C. (2008). Physicians’ contact with families after the death of pediatric patients: A survey of pediatric critical care practitioners’ beliefs and self-reported practices. Pediatrics, 122(6), e1174–e1178. https://doi.org/10.1542/peds.2008-0952[PMC][19015203
   PubMed Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
   Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2021). To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Research in Sport, Exercise and Health, 13(2), 201–216. https://doi.org/10.1080/2159676X.2019.1704846
   Web of Science ®Google Scholar
• Cook, P., White, D., & Ross Russell, R. (2002). Bereavement support following sudden and unexpected death: Guidelines for care. Archives of Disease in Childhood, 87(1), 36–38. https://doi.org/10.1136/adc.87.1.36
   PubMed Web of Science ®Google Scholar
• Creed, J., Ruffin, J., & Ward, M. (2001). A weekend camp for bereaved siblings. Cancer Practice, 9(4), 176–182. https://doi.org/10.1046/j.1523-5394.2001.94005.x
   PubMedGoogle Scholar
• Decinque, N., Monterosso, L., Dadd, G., Sidhu, R., Macpherson, R., & Aoun, S. (2006). Bereavement support for families following the death of a child from cancer: Experience of bereaved parents. Journal of Psychosocial Oncology, 24(2), 65–83. https://doi.org/10.1300/J077v24n02_05
   PubMed Web of Science ®Google Scholar
• Donovan, L. A., Wakefield, C. E., Russell, V., Fardell, J., Mallitt, K. A., Hetherington, K., & Cohn, R. (2021). Variables associated with grief and personal growth following the death of a child from cancer: A mixed method analysis. Death Studies, 45(9), 702–713. https://doi.org/10.1080/07481187.2019.1682087
   PubMed Web of Science ®Google Scholar
• Dyregrov, K. (2004). Bereaved parents’ experience of research participation. Social Science & Medicine, 58(2), 391–400. https://doi.org/10.1016/S0277-9536(03)00205-3
   PubMed Web of Science ®Google Scholar
• Eggly, S., Meert, K. L., Berger, J., Zimmerman, J., Anand, K. J., Newth, C. J., Harrison, R., Carcillo, J., Dean, J. M., Willson, D. F., Nicholson, C., & Kennedy Shriver, E. (2011). A framework for conducting follow-up meetings with parents after a child’s death in the pediatric intensive care unit. Pediatric Critical Care Medicine, 12(2), 147–152. https://doi.org/10.1097/PCC.0b013e3181e8b40c
   PubMed Web of Science ®Google Scholar
• Endo, K., Yonemoto, N., & Yamada, M. (2015). Interventions for bereaved parents following a child’s death: A systematic review. Palliative Medicine, 29(7), 590–604. https://doi.org/10.1177/0269216315576674
   PubMed Web of Science ®Google Scholar
• Gijzen, S., L'Hoir, M. P., Boere-Boonekamp, M. M., & Need, A. (2016). How do parents experience support after the death of their child? BMC Pediatrics, 16(1), 204. https://doi.org/10.1186/s12887-016-0749-9
   PubMedGoogle Scholar
• Giorgali, S. (2022). Bereaved parents’ needs regarding hospital based bereavement care after the death of a child to cancer. Death Studies, 46(6), 1472–1480. https://doi.org/10.1080/07481187.2020.1824202
   PubMed Web of Science ®Google Scholar
• Goodenough, B., Drew, D., Higgins, S., & Trethewie, S. (2004). Bereavement outcomes for parents who lose a child to cancer: Are place of death and sex of parent associated with differences in psychological functioning? Psycho-oncology, 13(11), 779–791. https://doi.org/10.1002/pon.795
   PubMed Web of Science ®Google Scholar
• Hall, A. E., Bryant, J., Sanson-Fisher, R. W., Fradgley, E. A., Proietto, A. M., & Roos, I. (2018). Consumer input into health care: Time for a new active and comprehensive model of consumer involvement. Health Expectations, 21(4), 707–713. https://doi.org/10.1111/hex.12665
   PubMed Web of Science ®Google Scholar
• Helton, G., Morris, P., Dole, O., Wolfe, W., & Snaman, J. (2021). Parental perceptions of hospital-based bereavement support following a child’s death from cancer: Room for improvement. Journal of Pain and Symptom Management, 61(6), 1254–1260. https://doi.org/10.1016/j.jpainsymman.2020.11.012
   PubMed Web of Science ®Google Scholar
• Kowalczyk, J., Samardakiewicz, M., Fitzgerald, E., Essiaf, S., Ladenstein, R., Vassal, G., Kienesberger, A., & Pritchard-Jones, K. (2014). Towards reducing inequalities: European standards of care for children with cancer. European Journal of Cancer, 50(3), 481–485. https://doi.org/10.1016/j.ejca.2013.11.004
   PubMed Web of Science ®Google Scholar
• Lichtenthal, W. G., Sweeney, C. R., Roberts, K. E., Corner, G. W., Donovan, L. A., Prigerson, H. G., & Wiener, L. (2015). Bereavement follow-up after the death of a child as a standard of care in pediatric oncology. Pediatric Blood Cancer, 62, 834–869. https://doi.org/10.1002/pbc.25700
   PubMed Web of Science ®Google Scholar
• Nicholas, D. B., Beaune, L., Barrera, M., Blumberg, J., & Belletrutti, M. (2016). Examining the experiences of fathers of children with a life-limiting illness. Journal of Social Work in End-of-Life & Palliative Care, 12(1–2), 126–144. https://doi.org/10.1080/15524256.2016.1156601
   PubMed Web of Science ®Google Scholar
• Nikkola, I., Kaunonen, M., & Aho, A. L. (2013). Mother’s experience of the support from a bereavement follow-up intervention after the death of a child. Journal of Clinical Nursing, 22(7–8), 1151–1162. https://doi.org/10.1111/j.1365-2702.2012.04247.x
   PubMed Web of Science ®Google Scholar
• O'Connor, K., & Barrera, M. (2014). Changes in parental self-identity following the death of a child to cancer. Death Studies, 38(6-10), 404–411. https://doi.org/10.1080/07481187.2013.801376
   PubMed Web of Science ®Google Scholar
• Reilly-Smorawski, B., Armstrong, A. V., & Catlin, E. A. (2002). Bereavement support for couples following death of a baby: Program development and 14-year exit analysis. Death Studies, 26(1), 21–37. https://doi.org/10.1080/07481180210145
   PubMed Web of Science ®Google Scholar
• Snaman, J. M., Kaye, E. C., Levine, D. R., Cochran, B., Wilcox, R., Sparrow, C. K., Noyes, N., Clark, L., Avery, W., & 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. https://doi.org/10.1016/j.jpainsymman.2016.10.359
   PubMed Web of Science ®Google Scholar
• Stroebe, M., Finkenauer, C., Wijngaards-de Meij, L., Schut, H., van den Bout, J., & Stroebe, W. (2013). Partner-oriented self-regulation among bereaved parents: The costs of holding in grief for the partner’s sake. Psychological Science, 24(4), 395–402. https://doi.org/10.1177/0956797612457383
   PubMed Web of Science ®Google Scholar
• Stroebe, M., & Schut, H. (2010). The dual process model of coping with bereavement: A decade on. Omega, 61(4), 273–289. https://doi.org/10.2190/OM.61.4.b
   PubMed Web of Science ®Google Scholar
• Tager, J., Battles, H., Bedoya, S. Z., Gerhardt, C. A., Young-Saleme, T., & Wiener, L. (2019). Participation in online research examining end-of-life experiences: Is it beneficial, burdensome, or both for parents bereaved by childhood cancer? Journal of Pediatric Oncology Nursing, 36(3), 170–177. https://doi.org/10.1177/1043454219836963
   PubMed Web of Science ®Google Scholar
• Tracy, S. J. (2010). Qualitative quality: Eight “big-tent” criteria for excellent qualitative research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/10.1177/1077800410383121
   Web of Science ®Google Scholar
• van der Geest, I. M., Darlington, A. S., Streng, I. C., Michiels, E. M., Pieters, R., & van den Heuvel-Eibrink, M. M. (2014). Parents’ experiences of pediatric palliative care and the impact on long-term parental grief. Journal of Pain and Symptom Management, 47(6), 1043–1053. https://doi.org/10.1016/j.jpainsymman.2013.07.007
   PubMed Web of Science ®Google Scholar
• Vega, P., Rivera, M. S., & Gonzalez, R. (2014). When grief turns into love: Understanding the experience of parents who have revived after losing a child due to cancer. Journal of Pediatric Oncology Nursing, 31(3), 166–176. https://doi.org/10.1177/1043454213515547
   PubMed Web of Science ®Google Scholar
• Wiener, L., Kazak, A. E., Noll, R. B., Patenaude, A. F., & Kupst, M. J. (2015). Standards for the psychosocial care of children with cancer and their families: An introduction to the special issue. Pediatric Blood Cancer, 62, 419–424. https://doi.org/10.1002/pbc.25675
   Web of Science ®Google Scholar
• World Health Organization. (2018). Delivering quality health services: A global imperative for universal health coverage. Organisation for Economic Co-operation and Development, and The World Bank.
   Google Scholar