“While the child is alive, parents can still create meaningful memories that they can hold on to during their grief.”
He knows how the story could end.
A child could succumb to his illness in time.
A mother could return home to an empty bed.
But while there is life and time, Dr Andy Ho hopes to add new and meaningful chapters to the story.
Dr Ho, who specialises in palliative end-of-life care and particularly bereavement care for parents of terminally ill children, said: “There’s so much beauty in the life of a child.”
Dr Ho observed that conventional grief support often only begins after death, and that parents may not have the time to engage in sit-and-talk therapy. Hence, he developed the NeW-I, aimed to improve the emotional well-being of parents through online narrative therapy.
The potential of NeW-I to engage parents in intimate dialogue regarding their child’s caregiving means that NeW-I could better support and reduce psychosocial distress and caregiver burden among parent-caregivers.
“Grief needs to be acknowledged.”
“People come to terms with grief by expressing it,” said Dr Ho, Associate Professor at the School of Social Sciences, Nanyang Technological University.
“When parents tell their own stories, they gain clarity on their experiences. As they engage, articulate and reflect, they generate an internal resilience to continue doing what they do.”
Once a week, parents complete a structured writing exercise that encourages them to reflect on their experiences and emotions, and pen positive stories about their child.
“Many parents in caregiving roles are too consumed with doctors and medicine. They forget that their child is a person full of hope and life.”
Recounting a story submitted on NeW-I, Dr Ho said: “There was a mother who shared that her son refused to enter a toy store and buy a toy for himself because he knew the family was not well-off.”
“Reflecting on this made her realise how thoughtful her son was, despite his young age. It allowed her to see the human side, rather than the medical side, of her son.”
These written narratives are reviewed by a team of therapists and woven together in a legacy document that tells a story about the family, and provides solace and support for parents after their child’s passing.
Since its launch in 2019, NeW-I has already reported early outcomes.
Participants experienced higher levels of perceived social support, significant improvement in their quality of life and reduction in subjective caregiver burden.
Looking ahead, Dr Ho hopes to make the NeW-I platform available to healthcare and social workers and improve paediatric palliative services in Singapore. He also wants to widen NeW-I’s scope to include family members beyond immediate caregivers, and normalise open dialogues about grief in society.
“A child’s death is seen as something taboo and the grief is not acknowledged.The extended family can play a big role in helping parents come to terms with it.”
For Dr Ho, the importance of his work hit particularly close to home last year when he became a father for the first time.
“If my child was dying, I would want to know what to do. And I would want the people around me to understand how I feel.”
“This is much more than just research. It’s something I must do as a human being.”
