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

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 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.

The parental experiences of caring for children with childhood cancers in Singapore: a pilot focus group study

“…Interestingly, the findings of Ow 11 differed from the recent Singapore studies, 12,13 that reported parents of children with various chronic illnesses focused on the practical aspects of coping at the early stage of receiving their child’s diagnosis. Emotional needs, however, were more likely to surface after children had died from their illness.…”

“…Emotional needs, however, were more likely to surface after children had died from their illness. Nevertheless, those recent studies 12,13 were based on the retrospective experiences of bereaved parents whose children had died from a number of chronic illnesses including cardiac and renal conditions, cerebral palsy, cerebral vein thrombosis and childhood cancer. Moreover, as the loss of a child can result in significant changes in parents’ perception of life experiences 14 (e.g.…”

“…Moreover, as the loss of a child can result in significant changes in parents’ perception of life experiences 14 (e.g. finding personal meaning in child’s death), the differences between the study of Ow 11 and the recent studies 12,13 may also be influenced by participants’ characteristics (i.e. non-bereaved vs. bereaved parents).…”

A meta-ethnographic study of fathers’ experiences of caring for a child with a life-limiting illness

“…85,99,113 In addition, there has been little-no focus on young parents (aged between 13–25 years). A wealth of research has examined the experiences of middle aged parents; five studies included parents aged over 20 years 10,72,80,88,104 and six gave an account of parents over 65, 9,58,60,73,74,110 however their gender and number in that specific age range has not been specified. In 27 studies (44%) parents’ age was not specified at all.…”

“…6,73,77,89,94,97,105 Through the hardship they learnt what was valuable for them. 8,23,27,60,71,77,90–93,95 Some focused on hope and defiance to move forward in life, 6,23,27,28,77,88,102 whereas others talked about the importance of acceptance. 1,8,27,28,57,59,73,91,94,105,106 Religion was also a way to cope and manage the difficulty of the experience.…”