Skip to main content
Top
Published in: BMC Palliative Care 1/2020

Open Access 01-12-2020 | Care | Research article

Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore

Authors: Oindrila Dutta, Geraldine Tan-Ho, Ping Ying Choo, Xinyi Casuarine Low, Poh Heng Chong, Carolyn Ng, Sashikumar Ganapathy, Andy Hau Yan Ho

Published in: BMC Palliative Care | Issue 1/2020

Login to get access

Abstract

Background

In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child’s chronic life-threatening illness, there is no such study within the Asian context.

Methods

To bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018.

Results

Data analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants’ lived experience of their child’s chronic life-threatening illness and death, starting from the diagnosis of their child’s chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child’s death and the losses which accompanied the death (Theme 3) and participants’ experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or ‘rituals’ that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7).

Conclusion

These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.
Literature
1.
go back to reference Hug L, Sharrow D, You D, et al. Levels & trends in child mortality report 2017: estimates developed by the UN inter-agency Group for Child Mortality Estimation. New York: UNICEF; 2017. Hug L, Sharrow D, You D, et al. Levels & trends in child mortality report 2017: estimates developed by the UN inter-agency Group for Child Mortality Estimation. New York: UNICEF; 2017.
2.
go back to reference Modell B, Berry RJ, Boyle CA, Christianson A, Darlison M, Dolk H, Howson CP, Mastroiacovo P, Mossey P, Rankin J. Global regional and national causes of child mortality. Lancet. 2012;380:1556 author reply 1556–7.PubMedCrossRef Modell B, Berry RJ, Boyle CA, Christianson A, Darlison M, Dolk H, Howson CP, Mastroiacovo P, Mossey P, Rankin J. Global regional and national causes of child mortality. Lancet. 2012;380:1556 author reply 1556–7.PubMedCrossRef
3.
go back to reference Singapore Registry of Births and Deaths. Report on Registration of Births and Deaths 2016. Singapore: Immigration and Checkpoints Authority; 2017. Singapore Registry of Births and Deaths. Report on Registration of Births and Deaths 2016. Singapore: Immigration and Checkpoints Authority; 2017.
4.
go back to reference Committee on the Rights of the Child (2017) Singapore’s Fourth and Fifth Periodic Report. United Nations Convention on the Rights of the Child. Committee on the Rights of the Child (2017) Singapore’s Fourth and Fifth Periodic Report. United Nations Convention on the Rights of the Child.
5.
go back to reference Mun S, Ow R. Death of a child: perspective of Chinese mothers in Singapore. J Relig Spiritual Soc Work Soc Thought. 2017;36:306–25. Mun S, Ow R. Death of a child: perspective of Chinese mothers in Singapore. J Relig Spiritual Soc Work Soc Thought. 2017;36:306–25.
6.
go back to reference Attig T. Disenfranchised grief revisited: discounting Hope and love. Omega. 2004;49:197–215.CrossRef Attig T. Disenfranchised grief revisited: discounting Hope and love. Omega. 2004;49:197–215.CrossRef
7.
go back to reference Barrera M, O’Connor K, D’Agostino NM, Spencer L, Nicholas D, Jovcevska V, Tallet S, Schneiderman G. Early parental adjustment and bereavement after childhood cancer death. Death Studies. 2009;33:497–520.PubMedCrossRef Barrera M, O’Connor K, D’Agostino NM, Spencer L, Nicholas D, Jovcevska V, Tallet S, Schneiderman G. Early parental adjustment and bereavement after childhood cancer death. Death Studies. 2009;33:497–520.PubMedCrossRef
8.
go back to reference Youngblut JM, Brooten D, Cantwell GP, del Moral T, Totapally B. Parent health and functioning 13 months after infant or child NICU/PICU death. Pediatrics. 2013;132:e1295–301.PubMedPubMedCentralCrossRef Youngblut JM, Brooten D, Cantwell GP, del Moral T, Totapally B. Parent health and functioning 13 months after infant or child NICU/PICU death. Pediatrics. 2013;132:e1295–301.PubMedPubMedCentralCrossRef
9.
go back to reference Davies B, Gudmundsdottir M, Worden B, Orloff S, Sumner L, Brenner P. “Living in the dragon’s shadow”: fathers’ experiences of a child’s life-limiting illness. Death Studies. 2004;28:111–35.PubMedCrossRef Davies B, Gudmundsdottir M, Worden B, Orloff S, Sumner L, Brenner P. “Living in the dragon’s shadow”: fathers’ experiences of a child’s life-limiting illness. Death Studies. 2004;28:111–35.PubMedCrossRef
10.
go back to reference Doka KJ. Ethics, end-of-life decisions and grief. Mortality. 2005;10:83–90.CrossRef Doka KJ. Ethics, end-of-life decisions and grief. Mortality. 2005;10:83–90.CrossRef
11.
go back to reference Bergstraesser E, Inglin S, Hornung R, Landolt MA. Dyadic coping of parents after the death of a child. Death Studies. 2015;39:37–41.CrossRef Bergstraesser E, Inglin S, Hornung R, Landolt MA. Dyadic coping of parents after the death of a child. Death Studies. 2015;39:37–41.CrossRef
12.
go back to reference Alam R, Barrera M, D’Agostino N, Nicholas DB, Schneiderman G. Bereavement experiences of mothers and fathers over time after the death of a child due to cancer. Death Studies. 2012;36:1–22.PubMedCrossRef Alam R, Barrera M, D’Agostino N, Nicholas DB, Schneiderman G. Bereavement experiences of mothers and fathers over time after the death of a child due to cancer. Death Studies. 2012;36:1–22.PubMedCrossRef
13.
go back to reference Jordan J, Price JE, Prior L. Disorder and disconnection: parent experiences of liminality when caring for their dying child. Sociol Health Illness. 2015;37:839–55.CrossRef Jordan J, Price JE, Prior L. Disorder and disconnection: parent experiences of liminality when caring for their dying child. Sociol Health Illness. 2015;37:839–55.CrossRef
14.
go back to reference Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, Newth CJL, Dean JM, Willson DF, Nicholson C. Parents’ perspectives on physician-parent communication near the time of a Child's death in the pediatric intensive care unit. Pediatr Crit Care Med. 2008;9:2–7.PubMedPubMedCentralCrossRef Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, Newth CJL, Dean JM, Willson DF, Nicholson C. Parents’ perspectives on physician-parent communication near the time of a Child's death in the pediatric intensive care unit. Pediatr Crit Care Med. 2008;9:2–7.PubMedPubMedCentralCrossRef
15.
go back to reference Gillies J, Neimeyer RA. Loss, grief, and the search for significance: toward a model of meaning reconstruction in bereavement. J Constr Psychol. 2006;19:31–65. Gillies J, Neimeyer RA. Loss, grief, and the search for significance: toward a model of meaning reconstruction in bereavement. J Constr Psychol. 2006;19:31–65.
16.
go back to reference Bonanno GA, Wortman CB, Nesse RM. Prospective patterns of resilience and maladjustment during widowhood. Psychol Ageing. 2004;19:260–71.CrossRef Bonanno GA, Wortman CB, Nesse RM. Prospective patterns of resilience and maladjustment during widowhood. Psychol Ageing. 2004;19:260–71.CrossRef
17.
go back to reference Calhoun LG, Tedeschi RG (2014) Handbook of posttraumatic growth: research and practice. New York: Routledge. Calhoun LG, Tedeschi RG (2014) Handbook of posttraumatic growth: research and practice. New York: Routledge.
18.
go back to reference Tedeschi RG, Calhoun LG. Posttraumatic growth: conceptual foundations and empirical evidence. Psychol Inq. 2004;15:1–18.CrossRef Tedeschi RG, Calhoun LG. Posttraumatic growth: conceptual foundations and empirical evidence. Psychol Inq. 2004;15:1–18.CrossRef
19.
go back to reference Foster TL, Gilmer MJ, Davies B, Barrera M, Fairclough D, Vannatta K, Gerhardt CA. Bereaved parents’ and siblings' reports of legacies created by children with cancer. J Pediatr Oncol Nurs. 2009;26:369–76.PubMedPubMedCentralCrossRef Foster TL, Gilmer MJ, Davies B, Barrera M, Fairclough D, Vannatta K, Gerhardt CA. Bereaved parents’ and siblings' reports of legacies created by children with cancer. J Pediatr Oncol Nurs. 2009;26:369–76.PubMedPubMedCentralCrossRef
20.
go back to reference Foster TL, Gilmer MJ, Davies B, Dietrich MS, Barrera M, Fairclough DL, Vannatta K, Gerhardt CA. Comparison of continuing bonds reported by parents and siblings after a child’s death from cancer. Death Studies. 2011;35:420–40.PubMedPubMedCentralCrossRef Foster TL, Gilmer MJ, Davies B, Dietrich MS, Barrera M, Fairclough DL, Vannatta K, Gerhardt CA. Comparison of continuing bonds reported by parents and siblings after a child’s death from cancer. Death Studies. 2011;35:420–40.PubMedPubMedCentralCrossRef
21.
go back to reference Hynson JL, Aroni R, Bauld C, Sawyer SM. Research with bereaved parents: a question of how not why. Palliat Med. 2006;20:805–11.PubMedCrossRef Hynson JL, Aroni R, Bauld C, Sawyer SM. Research with bereaved parents: a question of how not why. Palliat Med. 2006;20:805–11.PubMedCrossRef
22.
go back to reference Rando TA. Creating therapeutic rituals in the psychotherapy of the bereaved. Psychother Theory Res Pract Train. 1985;22:236.CrossRef Rando TA. Creating therapeutic rituals in the psychotherapy of the bereaved. Psychother Theory Res Pract Train. 1985;22:236.CrossRef
23.
go back to reference Castle J, Phillips WL. Grief rituals: aspects that facilitate adjustment to bereavement. J Loss Trauma. 2003;8:41–71.CrossRef Castle J, Phillips WL. Grief rituals: aspects that facilitate adjustment to bereavement. J Loss Trauma. 2003;8:41–71.CrossRef
24.
go back to reference Cacciatore J, Flint M. Mediating grief: postmortem ritualization after child death. J Loss Trauma. 2012;17:158–72.CrossRef Cacciatore J, Flint M. Mediating grief: postmortem ritualization after child death. J Loss Trauma. 2012;17:158–72.CrossRef
25.
go back to reference Dutta O, Tan-Ho G, Choo PY, Ho AHY. Lived experience of a child’s chronic illness and death: a qualitative systematic review of the parental bereavement trajectory. Death Studies. 2019;43:547–61.PubMedCrossRef Dutta O, Tan-Ho G, Choo PY, Ho AHY. Lived experience of a child’s chronic illness and death: a qualitative systematic review of the parental bereavement trajectory. Death Studies. 2019;43:547–61.PubMedCrossRef
26.
go back to reference Stanton AL, Revenson TA, Tennen H. Health psychology: psychological adjustment to chronic disease. Annu Rev Psychol. 2007;58:565–92.PubMedCrossRef Stanton AL, Revenson TA, Tennen H. Health psychology: psychological adjustment to chronic disease. Annu Rev Psychol. 2007;58:565–92.PubMedCrossRef
27.
go back to reference Liben S, Papadatou D, Wolfe J. Pediatric palliative care: challenges and emerging ideas. Lancet. 2008;371:852–64.PubMedCrossRef Liben S, Papadatou D, Wolfe J. Pediatric palliative care: challenges and emerging ideas. Lancet. 2008;371:852–64.PubMedCrossRef
28.
go back to reference Creswell JW, Hanson WE, Clark Plano VL, Morales A. Qualitative research designs: selection and implementation. Couns Psychol. 2007;35:236–64.CrossRef Creswell JW, Hanson WE, Clark Plano VL, Morales A. Qualitative research designs: selection and implementation. Couns Psychol. 2007;35:236–64.CrossRef
29.
go back to reference Williams M. Making sense of social research. London: SAGE Publications Inc; 2002. Williams M. Making sense of social research. London: SAGE Publications Inc; 2002.
31.
go back to reference Neimeyer RA. Narrating the dialogical self: toward an expanded toolbox for the counselling psychologist. Couns Psychol Q. 2006;19:105–20.CrossRef Neimeyer RA. Narrating the dialogical self: toward an expanded toolbox for the counselling psychologist. Couns Psychol Q. 2006;19:105–20.CrossRef
32.
go back to reference Holstein J, Gubrium JF. Inside interviewing: new lenses, new concerns: Sage; 2003. Holstein J, Gubrium JF. Inside interviewing: new lenses, new concerns: Sage; 2003.
35.
go back to reference Neimeyer RA, Anderson A. Meaning reconstruction. In: Thompson N (ed) loss and grief: a guide for human services practitioners: Palgrave Macmillan; 2002. p. 45. Neimeyer RA, Anderson A. Meaning reconstruction. In: Thompson N (ed) loss and grief: a guide for human services practitioners: Palgrave Macmillan; 2002. p. 45.
36.
go back to reference Adler JM, Lodi-Smith J, Philippe FL, Houle I. The incremental validity of narrative identity in predicting well-being: a review of the field and recommendations for the future. Personal Soc Psychol Rev. 2016;20:142–75.CrossRef Adler JM, Lodi-Smith J, Philippe FL, Houle I. The incremental validity of narrative identity in predicting well-being: a review of the field and recommendations for the future. Personal Soc Psychol Rev. 2016;20:142–75.CrossRef
37.
go back to reference McAdams DP, McLean KC. Narrative identity. Curr Dir Psychol Sci. 2013;22:233–8.CrossRef McAdams DP, McLean KC. Narrative identity. Curr Dir Psychol Sci. 2013;22:233–8.CrossRef
38.
go back to reference Gehart DR. Case documentation in counseling and psychotherapy: a theory-informed. Cengage Learning: Competency-Based Approach; 2015. Gehart DR. Case documentation in counseling and psychotherapy: a theory-informed. Cengage Learning: Competency-Based Approach; 2015.
39.
go back to reference Ho AHY, Dutta O, Tan-Ho G, Choo PY, Low XC, Chong PH, Ng C, Ganapathy S (2019) Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness. BMJ Open https://doi.org/https://doi.org/10.1136/bmjopen-2019-032582. Ho AHY, Dutta O, Tan-Ho G, Choo PY, Low XC, Chong PH, Ng C, Ganapathy S (2019) Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness. BMJ Open https://​doi.​org/​https://​doi.​org/​10.​1136/​bmjopen-2019-032582.
40.
go back to reference Collins A, Hennessy-Anderson N, Hosking S, Hynson J, Remedios C, Thomas K. Lived experiences of parents caring for a child with a life-limiting condition in Australia: a qualitative study. Palliat Med. 2016;30:950–9.PubMedCrossRef Collins A, Hennessy-Anderson N, Hosking S, Hynson J, Remedios C, Thomas K. Lived experiences of parents caring for a child with a life-limiting condition in Australia: a qualitative study. Palliat Med. 2016;30:950–9.PubMedCrossRef
41.
go back to reference Aoun SM, Breen LJ, 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. Aoun SM, Breen LJ, 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.
42.
go back to reference Chong PH, Chan MY, Yusri LI. Do children die? A retrospective review of deaths in a children’s hospital. Singap Med J. 2012;53:192–5. Chong PH, Chan MY, Yusri LI. Do children die? A retrospective review of deaths in a children’s hospital. Singap Med J. 2012;53:192–5.
44.
go back to reference Ho AHY, Chan CLW, Leung PPY, Chochinov HM, Neimeyer RA, Pang SMC, Tse DMW. Living and dying with dignity in Chinese society: perspectives of older palliative care patients in Hong Kong. Age Ageing. 2013;42:455–61.PubMedCrossRef Ho AHY, Chan CLW, Leung PPY, Chochinov HM, Neimeyer RA, Pang SMC, Tse DMW. Living and dying with dignity in Chinese society: perspectives of older palliative care patients in Hong Kong. Age Ageing. 2013;42:455–61.PubMedCrossRef
45.
go back to reference Ho AHY, Car J, Ho M-HR, et al. A novel family dignity intervention (FDI) for enhancing and informing holistic palliative care in Asia: study protocol for a randomized controlled trial. Trials. 2017;18:587.PubMedPubMedCentralCrossRef Ho AHY, Car J, Ho M-HR, et al. A novel family dignity intervention (FDI) for enhancing and informing holistic palliative care in Asia: study protocol for a randomized controlled trial. Trials. 2017;18:587.PubMedPubMedCentralCrossRef
46.
go back to reference Ho AHY, Car J, Ho M-HR, et al (2019) Family dignity intervention (FDI) for advancing Asia palliative care: preliminary findings from a waitlist RCT. Association for Death Education and Counseling 41 st annual conference (Atlanta, GA, USA). Ho AHY, Car J, Ho M-HR, et al (2019) Family dignity intervention (FDI) for advancing Asia palliative care: preliminary findings from a waitlist RCT. Association for Death Education and Counseling 41 st annual conference (Atlanta, GA, USA).
47.
go back to reference Hedtke L. Creating stories of Hope: a narrative approach to illness, death and grief. Aust N Z J Fam Ther. 2014;35:4–19.CrossRef Hedtke L. Creating stories of Hope: a narrative approach to illness, death and grief. Aust N Z J Fam Ther. 2014;35:4–19.CrossRef
48.
go back to reference Rini A, Loriz L. Anticipatory mourning in parents with a child who dies while hospitalized. J Pediatr Nurs. 2007;22:272–82.PubMedCrossRef Rini A, Loriz L. Anticipatory mourning in parents with a child who dies while hospitalized. J Pediatr Nurs. 2007;22:272–82.PubMedCrossRef
49.
go back to reference Lichtenthal WG, Sweeney CR, Roberts KE, Corner GW, Donovan LA, Prigerson HG, Wiener L. Bereavement follow-up after the death of a child as a standard of care in pediatric oncology. Pediatric Blood Cancer. 2015;62:S834–69.PubMedPubMedCentralCrossRef Lichtenthal WG, Sweeney CR, Roberts KE, Corner GW, Donovan LA, Prigerson HG, Wiener L. Bereavement follow-up after the death of a child as a standard of care in pediatric oncology. Pediatric Blood Cancer. 2015;62:S834–69.PubMedPubMedCentralCrossRef
50.
go back to reference Gutman T, Hanson CS, Bernays S, et al. Child and parental perspectives on communication and decision making in pediatric CKD: a focus group study. Am J Kidney Dis. 2018;72:547–59.PubMedCrossRef Gutman T, Hanson CS, Bernays S, et al. Child and parental perspectives on communication and decision making in pediatric CKD: a focus group study. Am J Kidney Dis. 2018;72:547–59.PubMedCrossRef
51.
go back to reference Janusz B, Walkiewicz M. Parents’ needs for physician-parent communication in the face of life-threatening illness: qualitative analysis. Palliative Medicine in Practice. 2017;11:138–46. Janusz B, Walkiewicz M. Parents’ needs for physician-parent communication in the face of life-threatening illness: qualitative analysis. Palliative Medicine in Practice. 2017;11:138–46.
Metadata
Title
Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore
Authors
Oindrila Dutta
Geraldine Tan-Ho
Ping Ying Choo
Xinyi Casuarine Low
Poh Heng Chong
Carolyn Ng
Sashikumar Ganapathy
Andy Hau Yan Ho
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2020
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-020-00555-8

Other articles of this Issue 1/2020

BMC Palliative Care 1/2020 Go to the issue