A qualitative study on the experience of parents of children with chronic life-threatening illnesses using a narrative e-writing intervention (NeW-I)

• Main Author: Goh, Faith Ruo Ting
• Other Authors: Ho Hau Yan Andy
• Format: Final Year Project
• Language: English
• Published: Nanyang Technological University 2020
• Subjects: Social sciences::Psychology
• Online Access: https://hdl.handle.net/10356/138137
• Institution: Nanyang Technological University

This study examines the experience of parents caring actively for children with chronic life-threatening illnesses in the Singapore context. The study draws data from a novel narrative e-writing intervention (NeW-I) study which aims to enhance wellbeing, alleviate burden, and reduce adverse grief outcomes among these parents. Legacy documents belonging to 10 parents whose children were diagnosed with a chronic life-threatening illness were extracted for analysis. These documents are records of each parent’s journal writings throughout their NeW-I journey. Thematic analysis revealed nine themes reflecting the experiences of these parents. Eight of these themes can be categorized under strengths: support from caregiving allies, pausing for a breather, building caregiving repertoire, emerging virtues of caregiving; and stressors: coping with financial adversity, caring for specially-abled children, enduring unpleasant social attitudes, a test of family adaptability, accordingly. These two categories interact with each other. The last theme – my child before the disability, underlies parents’ commitment within their caregiving journey. This is the first-ever known study in the Asian context which explores the experience of parents caring actively for a child with chronic life-threatening illness. The findings add value to the previously limited knowledge of the Asian parental experience of raising a child with chronic life-threatening illness. Clinical and policy implications are discussed.