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Articles

Lived experience of a child’s chronic illness and death: A qualitative systematic review of the parental bereavement trajectory

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Pages 547-561 | Received 26 Nov 2017, Accepted 11 Jun 2018, Published online: 04 Oct 2018

References

  • Aoun, S. M., Breen, L. J., White, I., Rumbold, B., & Kellehear, A. (2018). What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach. Palliative Medicine, 1–11. doi: 10.1177/0269216318774995
  • Attig, T. (2004). Disenfranchised grief revisited: Discounting hope and love. Omega - Journal of Death and Dying, 49 (3), 197–215. doi: 10.2190/p4tt-j3bf-kfdr-5jb1
  • Ballard, K. L. (2004). Meeting the needs of siblings of children with cancer. Pediatric Nursing, 30 (5), 394–401. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/15587532
  • Barrera, M., D'Agostino, N. M., Schneiderman, G., Tallett, S., Spencer, L., & Jovcevska, V. (2007). Patterns of parental bereavement following the loss of a child and related factors. Omega - Journal of Death and Dying, 55 (2), 145–167. doi: 10.2190/OM.55.2.d
  • Barrera, M., O'Connor, K., D'Agostino, N. M., Spencer, L., Nicholas, D., Jovcevska, V., … Schneiderman, G. (2009). Early parental adjustment and bereavement after childhood cancer death. Death Studies, 33 (6), 497–520. doi: 10.1080/07481180902961153
  • Bergstraesser, E., Inglin, S., Hornung, R., & Landolt, M. A. (2015). Dyadic coping of parents after the death of a child. Death Studies, 39 (1–5), 37–41. doi: 10.1080/07481187.2014.920434
  • Berrett-Abebe, J., Levin-Russman, E., Gioiella, M. E., & Adams, J. M. (2017). Parental experiences with a hospital-based bereavement program following the loss of a child to cancer. Palliative and Supportive Care, 15 (3), 348–358.
  • Cooke, A., Smith, D., & Booth, A. (2012). Beyond PICO. Qualitative Health Research, 22 (10), 1435–1443. doi: 10.1177/1049732312452938
  • Corden, A., Sloper, P., & Sainsbury, R. (2002). Financial effects for families after the death of a disabled or chronically ill child: A neglected dimension of bereavement. Child: Care, Health and Development, 28 (3), 199–204. doi: 10.1046/j.1365-2214.2002.00267.x
  • Davies, R. (2004). New understandings of parental grief: Literature review. Journal of Advanced Nursing, 46 (5), 506–513.
  • Davies, B., Baird, J., & Gudmundsdottir, M. (2013). Moving family-centered care forward: Bereaved fathers’ perspectives. Journal of Hospice and Palliative Nursing: JHPN: The Official Journal of the Hospice and Palliative Nurses Association, 15 (3), 1–12. doi: 10.1097/NJH.0b013e3182765a2a
  • Davies, B., Gudmundsdottir, M., Worden, B., Orloff, S., Sumner, L., & Brenner, P. (2004). “Living in the dragon’s shadow”: Fathers’ experiences of a child’s life-limiting illness. Death Studies, 28 (2), 111–135. doi: 10.1080/07481180490264501
  • 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. doi: 10.1300/J077v24n02
  • Denhup, C. Y. (2017). A new state of being: The lived experience of parental bereavement. OMEGA-Journal of Death and Dying, 74 (3), 345–360. doi: 10.1177/0030222815598455
  • Dias, N., Docherty, S., & Brandon, D. (2017). Parental bereavement: Looking beyond grief. Death Studies, 41 (5), 318–327. doi: 10.1080/07481187.2017.1279239
  • Doka, K. J. (2005). Ethics, end-of-life decisions and grief. Mortality, 10 (1), 83–90. doi: 10.1080/13576270500031105
  • Foster, T. L., Gilmer, M. J., Davies, B., Barrera, M., Fairclough, D., Vannatta, K., & Gerhardt, C. A. (2009). Bereaved parents’ and siblings’ reports of legacies created by children with cancer. Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses, 26 (6), 369–376. doi: 10.1177/1043454209340322
  • Foster, T. L., Gilmer, M. J., Davies, B., Dietrich, M. S., Barrera, M., Fairclough, D. L., Vannatta, K., Gerhardt, C. A. (2011). Comparison of continuing bonds reported by parents and siblings after a child’s death from cancer. Death Studies, 35 (5), 420–440. doi: 10.1080/07481187.2011.553308
  • Gear, R. (2014). Bereaved parents’ perspectives on informal social support: “What worked for you?”. Journal of Loss & Trauma, 19 (2), 173–188. doi: 10.1080/15325024.2013.763548
  • Grinyer, A. (2012). A bereavement group for parents whose son or daughter died from cancer: How shared experience can lessen isolation. Mortality, 17 (4), 338–354. doi: 10.1080/13576275.2012.730684
  • Ho, S., & Brotherson, S. E. (2007). Cultural influences on parental bereavement in Chinese families. Omega - Journal of Death and Dying, 55 (1), 1–25. doi: 10.2190/4293-202L-5475-2161
  • Ho, A. H. Y., & Chan, C. L. W. (2011). Liberating dying people and bereaved families from the oppression of death and loss in Chinese societies: A public health approach. In S. Conway (Ed.), Governing death and loss: Empowerment, involvement and participation (pp. 119–128). UK: Oxford University Press.
  • Hogan, N. S., & Schmidt, L. A. (2002). Testing the grief to personal growth model using structural equation modeling. Death Studies, 26 (8), 615–634. doi: 10.1080/07481180290088338
  • Ho, A. H. Y., & Tan-Ho, G.(2016). A Good Death: Resolving the Complexity of Mortality. In J. W. Vasbinder & B. Gulyas (Eds.) East-West Connections: Cultural Patterns and Neurocognitive Circuits (Chapter 9, pp. 169–181). Singapore: World Scientific Publishing.
  • Hooghe, A., Rosenblatt, P. C., & Rober, P. (2018). “We hardly ever talk about it”: Emotional Responsive Attunement in Couples after a Child's Death. Family Process, 57 (1), 226–240. doi: 10.1111/famp.12274
  • 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), 805–811. doi: 10.1177/0269216306072349
  • Janoff-Bulman, R. (2010). Shattered Assumptions: Towards a New Psychology of Trauma. New York: Simon and Schuster.
  • Jordan, J., Price, J. E., & Prior, L. (2015). Disorder and disconnection: Parent experiences of liminality when caring for their dying child. Sociology of Health & Illness, 37 (6), 839–855. doi: 10.1111/1467-9566.12235
  • Liberati, A., Altman, D. G., Tetzlaff, J., Mulrow, C., Gøtzsche, P. C., Ioannidis, J. P. A., … Moher, D. (2009). The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: Explanation and elaboration. PLoS Medicine, 6 (7), e1000100.
  • 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 (Suppl 5), S834–S869. doi: 10.1002/pbc.25700
  • Little, M., Jordens, C. F. C., Paul, K., Montgomery, K., & Philipson, B. (1998). Liminality: A major category of the experience of cancer illness. Social Science & Medicine, 47 (10), 1485–1494.
  • Meert, K. L., Eggly, S., Pollack, M., Anand, K. J. S., Zimmerman, J., Carcillo, J., … Nicholson, C; National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. (2008). Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatric Critical Care Medicine: A Journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care, Societies, 9 (1), 2–7.
  • Neimeyer, R. A. (2006). Narrating the dialogical self: Toward an expanded toolbox for the counselling psychologist. Counselling Psychology Quarterly, 19 (1), 105–120. doi: 10.1080/09515070600655205
  • Neimeyer, R. A. (2006a). Bereavement and the quest for meaning: Rewriting stories of loss and grief. Hellenic Journal of Psychology, 3 (3), 181–188.
  • Olson-Garriott, A. N., Gamino, L. A., Davies, E. B., & Gudmundsdottir, M. (2015). Having or adopting another child: Perspectives from bereaved fathers. Professional Psychology, Research and Practice, 46 (5), 317–324. doi: 10.1037/pro0000026
  • Patton, G. C., Coffey, C., Sawyer, S. M., Viner, R. M., Haller, D. M., Bose, K., … Mathers, C. D. (2009). Global patterns of mortality in young people: A systematic analysis of population health data. The Lancet, 374 (9693), 881–892. doi: 10.1016/S0140-6736(09)60741-8
  • Price, J. E., & Jones, A. M. (2015). Living through the life-altering loss of a child: A narrative review. Issues in Comprehensive Pediatric Nursing, 38 (3), 222–240. doi: 10.3109/01460862.2015.1045102
  • Price, J. E., Jordan, J., Prior, L., & Parkes, J. (2011). Living through the death of a child: A qualitative study of bereaved parents’ experiences. International Journal of Nursing Studies, 48 (11), 1384–1392. doi: 10.1016/j.ijnurstu.2011.05.006
  • Reilly, D. E., Huws, J. C., Hastings, R. P., & Vaughan, F. L. (2008). ‘When your child dies you don’t belong in that world any more’ – Experiences of mothers whose child with an intellectual disability has died. Journal of Applied Research in Intellectual Disabilities: JARID, 21 (6), 546–560. doi: 10.1111/j.1468-3148.2008.00427.x
  • Rossetto, K. R. (2014). Creating philanthropic foundations to deal with grief: Case studies of bereaved parents. Death Studies, 38 (8), 531–537. doi: 10.1080/07481187.2014.899652
  • Schormans, A. F. (2004). Experiences following the deaths of disabled foster children: “We don’t feel like ‘foster’ parents”. Omega – Journal of Death and Dying, 49 (4), 347–369.
  • Schwab, R. (1992). Effects of a child’s death on the marital relationship: A preliminary study. Death Studies, 16 (2), 141–154. doi: 10.1080/07481189208252564
  • Silverman, D. (2006). Interpreting Qualitative Data: Methods for Analysing Talk, Text and Interaction (3rd ed.). London: Sage.
  • Stroebe, M., & Schut, H. (2010). The dual process model of coping with bereavement: A decade on. Omega – Journal of Death and Dying, 61 (4), 273–289.
  • Swingler, G. H., Volmink, J., & Ioannidis, J. P. A. (2003). Number of published systematic reviews and global burden of disease: Database analysis. BMJ, 327 (7423), 1083–1084.
  • Talbot, K. (2002). What forever means after the death of a child: Transcending the trauma, living with the loss. New York: Brunner-Routledge. Retrieved from https://market.android.com/details?id=book-ItTZf5I9oxwC
  • Tan, J. S., Docherty, S. L., Barfield, R., & Brandon, D. H. (2012). Addressing parental bereavement support needs at the end of life for infants with complex chronic conditions. Journal of Palliative Medicine, 15 (5), 579–584. doi: 10.1089/jpm.2011.0357
  • Tedeschi, R. G., & Calhoun, L. G. (2004). Post traumatic growth: Conceptual foundations and empirical evidence. Psychological Inquiry, 15 (1), 1–18.
  • Thomas, J. D., & Harden, A. D. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8 (45) 1–10. doi: 10.1186/1471-2288-8-45
  • Titus, B., & de Souza, R. (2011). Finding meaning in the loss of a child: Journeys of chaos and quest. Health Communication, 26 (5), 450–460. doi: 10.1080/10410236.2011.554167
  • Toye, F., Seers, K., Allcock, N., Briggs, M., Carr, E., & Barker, K. (2014). Meta-ethnography 25 years on: Challenges and insights for synthesizing a large number of qualitative studies. BMC Medical Research Methodology, 14, 80. doi: 10.1186/1471-2288-14-80
  • 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: Official Journal of the Association of Pediatric Oncology Nurses, 31 (3), 166–176. doi: 10.1177/1043454213515547
  • Wheeler, I. (2001). Parental bereavement: The crisis of meaning. Death Studies, 25 (1), 51–66. doi: 10.1080/07481180126147
  • Williams, M. (2002). Making sense of social research. London: SAGE Publications Inc.
  • You, D., Wardlaw, T., Salama, P., & Jones, G. (2010). Levels and trends in under-5 mortality, 1990–2008. The Lancet, 375 (9709), 100–103. doi: 10.1016/S0140-6736(09)61601-9

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