narrative e-writing intervention (new-i) for parents of children with chronic life-threatening illness

Conditions: Parent of Child With Chronic Life-threatening Illness

Summary: narrative e-writing intervention (new-i) is an evidence-based, strength-focused and meaning-oriented approach that aims at enhancing well-being, alleviating burden, and reducing adverse grief outcomes among singaporean parents caring for a child with chronic life-threatening illness. in collaboration with kk women's and children's hospital and club rainbow singapore, a pilot randomized controlled trial with a built-in qualitative evaluation and feasibility study will be carried out to assess the efficacy of the therapist-facilitated new-i protocol and platform among a purposive sample of 66 participants. the findings generated will form the foundation for a full-scale rct for advancing paediatric palliative care and parental bereavement support.

background: conventional grief support interventions for parents whose children are suffering from a chronic life-threatening illness often begin only after the child's death. despite robust evidence which shows that pre-loss interventions that enhance death preparedness can alleviate psychological distress and prevent adverse grief outcomes among family caregivers of dying patients, there is no known program designed specifically to address the psycho-emotional-spiritual needs of parents facing child loss. and while the national strategy for palliative care in singapore aims to promote holistic end-of- life care services to patients and their caregivers, vast inadequacy continues to exist in the support provided to parents caring for a dying child in the local context. objective and methods: a novel therapist-facilitated, online intervention is conceived to fill this critical service gap. adopting an evidence-based approach, the research team has developed a strength-focused and meaning-oriented narrative e-writing intervention (new-i) for parents anticipating the death of their child due to a chronic life-threatening condition. the design of new-i is informed by an existing body of research (i.e. international systematic review and local qualitative inquiry) that critically examines the lived experience of bereaved parents of children with life- limiting illnesses. new-i will be implemented in singapore in collaboration with kk women and child's hospital and club rainbow singapore. a pilot randomized control trial (rct) with a built-in accessibility and feasibility study will examine the efficacy of the new-i therapeutic protocol for enhancing quality of life, spiritual wellbeing, hope and perceived social support, as well as reducing depressive symptoms, caregiver burden and anticipatory grief among a purposive sample of 66 participants. significance: new-i aspires to enhance quality of life, spiritual well-being, hope and sense of social support, as well as alleviating depressive symptoms, caregiving burden, and adverse grief outcomes among singaporean parents facing the terminal illness and eventual death of their sick child. the findings generated will form the foundation of a full-scale rct for advancing holistic paediatric palliative care and parental bereavement support locally and around the world.

Eligibility criteria:
inclusion criteria: * mother or father whose child has been diagnosed with a chronic life-threatening illness between the ages of 0-19 years, with a prognosis of more than 3 months since time of study participation so as to ensure successfully completion of all intervention components before child's death. * able to speak, read and write in english, as well as to provide informed consent. exclusion criteria: * cannot provide informed consent * suffering from severely high levels of depressive symptoms, anxiety and psychological distress (i. e. score of 19 or higher on patient health questionnaire-9 (phq-9) or score of 29 or higher on kessler psychological distress scale (k-10))

Keywords: anticipatory grief intervention randomized controlled trial narrative therapy therapist-facilitated e-counselling