Abstract
BackgroundIn 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.MethodsTo 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.ResultsData 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).ConclusionThese themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.
Highlights
In 2016, over 6.6 million children died globally, and 245 children died in Singapore
Present study and research questions The present study aims to bridge the knowledge gap identified by Dutta et al by comprehensively understanding the lived experience of bereaved parents in Singapore from the time of their child’s diagnosis through bereavement, thereby serving as a first-of-its kind Asian study to inform the development of culturally-sensitive holistic support services for parents facing impending and actual child loss
In liaison with three community collaborators, namely HCA Hospice Care (HCA), Children’s Cancer Foundation (CCF), and Club Rainbow Singapore (CRS), family units of lone or couple parents who lost their child to a chronic life-threatening illness were invited to participate in the study
Summary
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. In 2016, over 6.6 million children died globally [1]. Chronic illnesses are a prevalent cause of child mortality [2]. Child loss is associated with disenfranchised grief, that is, the magnitude of loss that mourning parents experience is not recognized by society [6]. Bereaved parents are at greater risk of physical, psychological and social health problems, especially in the initial months after child loss [7, 8]
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