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). 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 as an outcome of their journey (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). Conclusions: These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally-sensitive support services for grieving Asian parents around the globe.