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

Dutta, Oindrila; Tan-Ho, Geraldine; Choo, Ping Ying; Ho, Andy Hau Yan

doi:10.1080/07481187.2018.1503621

Cited by 31 publications

(39 citation statements)

References 53 publications

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“…Findings from this Asian study where participants were of predominantly Chinese origin, followed by Malay and Indian origin, build on our previous work in parental bereavement which focused on participants from a Western context [25]. An important contribution of the present study is its value-addition to the literature on family support for parent-caregivers and bereaved parents.…”

Section: Discussionsupporting

confidence: 55%

“…For bereaved parents, ritualization following child death can help to mediate grief through maintaining continuing bonds with their deceased child, providing a sense of control and offering a means of posttraumatic growth by honoring and memorializing their child [24]. Dutta et al explored the lived experience of parental bereavement due to a child's chronic life-threatening illness and subsequent death in a qualitative systematic review of 25 high-quality articles published between 2000 and 2017, and highlighted that there were no Asian studies conducted on the parental bereavement experience stemming from a child's death due to chronic illness [25]. This means that the unique needs and concerns of Asian bereaved parents remains unknown, creating a knowledge gap in the delivery of to Asian parents.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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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.

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Section: Discussionsupporting

confidence: 55%

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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“…Findings from this study build on our previous work in parental bereavement [25]. However, contrary to our previous dataset, which was derived from western populations, participants in this study were of predominantly Chinese origin, followed by Malay and Indian origin.…”

Section: Theme 7: Holistic Healthcare Approachsupporting

confidence: 54%

Trauma to Transformation: The Lived Experience of Bereaved Parents of Children with Chronic Life-Threatening Illnesses in Singapore

Dutta

Tan-Ho

Choo

et al. 2019

Preprint

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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 aided participants to regain power over their lives (Theme 2), helped them to sustain an intimate bond with their child beyond death (Theme 4), and aided participants’ transcendence of 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.

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“…[Insert Table 1 here] These findings echo previous literature that parents facing potential child loss could benefit from psychosocial and therapeutic interventions as early as prognosis and throughout the illness trajectory, which could ease the transition from caregiving, through mortality and bereavement [9,[11][12][13], thus mitigating adverse grief outcomes [14]. However, most supportive interventions for parents caring for children with chronic life-threatening illness only occur after bereavement [15][16][17], and a recent systematic review found negligible evidence to support their effectiveness [18].…”

Section: Parental Bereavement Trajectories Of Child Losssupporting

confidence: 78%

“…Our research team recently conducted a qualitative systematic review of 25 high-quality research articles published between 2000 and 2017, exploring the lived experience of parental bereavement due to a child's chronic life-threatening illness; a four-phase parental bereavement trajectory of child loss was developed, highlighting appropriate interventions that help parents identify care needs, elicit caregiving strengths, enhance death preparedness, and foster meaning-making throughout the illness trajectory in order to reduce psycho-emotional distress during end-of-life and into bereavement [9].…”

Section: Parental Bereavement Trajectories Of Child Lossmentioning

confidence: 99%

A Novel Narrative E-Writing Intervention (NeW-I) for Parents of Children with Chronic Life-Threatening Illnesses: Protocol for an Open-Label Randomized Controlled Trial

Ho¹,

Dutta

Tan-Ho

et al. 2019

Preprint

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Background: Conventionally, psycho-socio-emotional interventions for parents of children with chronic life-threatening illness begin post child loss. Evidence indicates pre-loss interventions addressing anticipatory grief can improve psycho-socio-emotional well-being and grief outcomes among family caregivers of dying patients, but no known intervention addresses the unique psycho-socio-emotional needs of Asian parents facing their child’s chronic life-threatening illness. Globally, palliative care strives to holistically support patients and their caregivers at the end-of-life, but inadequacies exist both globally and locally in pediatric palliative care and parental bereavement support services. Aim: A novel evidence-based Narrative e-Writing Intervention (NeW-I) is developed to address this gap. NeW-I is a strength-focused, meaning-oriented and therapist-facilitated mobile app and web-based counseling platform that aims to enhance quality of life, spiritual well-being, hope and perceived social support, and reduce depressive symptoms, caregiver burden and risk of complicated grief among parents facing their child’s chronic life-threatening illness. Methods: The design of NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of bereaved parents of children with chronic life-threatening illness. Together with four major local pediatric palliative care providers, NeW-I is implemented in Singapore as an open-label pilot randomized controlled trial with 66 parents and supplemented with a built-in accessibility and feasibility study. Discussion: NeW-I aspires to improve psycho-socio-emotional well-being of parents facing their child’s chronic life-threatening illness through a structured cyber-counseling platform, thereby enhancing holistic pediatric palliative care and parental bereavement support services. Findings from this pilot study can inform large-scale implementation and evaluation of NeW-I in Singapore and globally.

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

Cited by 31 publications

References 53 publications

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

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

Trauma to Transformation: The Lived Experience of Bereaved Parents of Children with Chronic Life-Threatening Illnesses in Singapore

A Novel Narrative E-Writing Intervention (NeW-I) for Parents of Children with Chronic Life-Threatening Illnesses: Protocol for an Open-Label Randomized Controlled Trial

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