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 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.

A Novel Narrative E-Writing Intervention for Parents of Children With Chronic Life-Threatening Illnesses: Protocol for a Pilot, Open-Label Randomized Controlled Trial

“…A 4-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 trajectory of their child’s illness to reduce psychoemotional distress during the period of end-of-life caregiving and into bereavement [ 12 ]. Our research team conducted a second study to examine the Asian experience of parental bereavement via meaning-oriented strength-focused interviews with 6 couples, 13 mothers, 4 fathers, and 2 primary parental figures (N=25 parental units) who lost their child to a chronic life-threatening illness in Singapore [ 13 , 14 ]. Grounded theory analysis revealed 7 themes and 25 subthemes that were organized into a trauma-to-transformation model of parental bereavement ( Figure 1 ).…”

“…Grounded theory analysis revealed 7 themes and 25 subthemes that were organized into a trauma-to-transformation model of parental bereavement ( Figure 1 ). This culture-specific model shows the milestones of how Asian bereaved parents journeyed through their child’s life-threatening illness and eventual death, describing the ritualistic actions as well as family communication and transactional patterns that aided them to better cope with their loss, to regain control over their lives, to sustain a continuing bond with their deceased child, and to move forward with and ultimately transcend their grief through meaning reconstruction [ 13 , 14 ].…”

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

“…Our research team conducted a second study to examine the Asian experience of parental bereavement, via meaning-oriented strength-focused interviews with 6 couples, 13 mothers, 4 fathers and 2 primary parental figures (N = 25 parental units) who lost their child to chronic life-threatening illness in Singapore [13,14]. Grounded theory analysis revealed 7 themes and 25 sub-themes that were organized into a Trauma to Transformation Model of Parental Bereavement (See Figure 1).…”

“…Grounded theory analysis revealed 7 themes and 25 sub-themes that were organized into a Trauma to Transformation Model of Parental Bereavement (See Figure 1). This culture-specific model shows the milestones of how Asian bereaved parents journeyed through their child's life-threatening illness and eventual death, describing the ritualistic actions that aided them to better cope with their loss, to regain control over their lives, to sustain a continuing bond with their deceased child, to move forward with and ultimately transcend their grief through meaning reconstruction [13,14].…”

“…The development and evaluation of NeW-I is guided by the Medical Research Council Framework for the Development and Evaluation of Complex Interventions which is widely recognized in the design and evaluation of complex interventions to improve health outcomes [45,46]. NeW-I is also inspired by the meaning-reconstruction model [47], the narrative approach to anticipatory grief [48], dignity therapy [31,32], family dignity intervention for holistic end-of-life care [33], and the findings of a recent investigation on Asian parental bereavement experience of child loss by our research team [13,14]. This study has four objectives, which are to:…”