Parent of Child With Chronic Life-threatening Illness Clinical Trial
Official title:
Development and Evaluation of a Narrative E-Writing Intervention (NeW-I) for Parents of Children With Chronic Life-Threatening Illness
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.
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