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

Abstract

To understand the lived experience of parents who have lost their child to a chronic life-limiting condition, six major databases were searched by adhering to the PRISMA guidelines. Articles were screened for appropriateness using the SPIDER tool, and relevant qualitative studies were selected for full-text data analysis using Thematic Synthesis. Findings were categorized into 13 themes that were further organized into a four-phase trajectory of parental bereavement experience of child loss, namely: Liminal Margin, Holding Space, Navigating Losses, and Reconstructing Lives. The findings are discussed in the light of existing literature with practical recommendations for enhancing parental bereavement support services.

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

“…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.…”

“…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.…”

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

“…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.…”

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

“…[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].…”

“…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].…”