Compassionate healthcare for parents of children with life-limiting illnesses: A qualitative study

• Main Authors: Chong, Lee Ai, Khalid, Farah, Abdullah, Adina
• Format: Article
• Published: Medknow Publications 2022
• Subjects: RA Public aspects of medicine; RJ Pediatrics
• Online Access: http://eprints.um.edu.my/43962/

Objectives: Premature death of a child from a serious illness is probably one of the most painful experiences for a parent. This study examined the clinical experiences of bereaved parents of children with a life-limiting illness to provide recommendations for quality care. Materials and Methods: Data were collected using semi-structured in-depth interviews with bereaved parents whose children had died at least 3 months before the interview. Parents were purposively sampled from two institutions offering end-of-life care to children with life-limiting illnesses. Data were analysed using thematic analysis. Results: Data analysis revealed three main themes: (1) Clinical communication, (2) Healthcare infrastructure and (3) Non-physical aspects of healthcare. The seven subthemes uncovered were as follows: (1) Honesty and clarity, (2) empathy, (3) interdisciplinary communication, (4) inconveniences in hospital, (5) home palliative care, (6) financial burden of illness and (7) psychosocial and spiritual support. Conclusion: Strategies to improve healthcare for children and their families are multifold. Underlying the provision of quality care is compassion; a child and family-friendly healthcare system with compassionate providers and compassionate institutional policies are vital components to achieving quality healthcare. Culturally sensitive psychosocial, emotional and spiritual support will need to be integrated as standard care. ©2022 Published by Scientific Scholar on behalf of Indian Journal of Palliative Care.