Chong Leeai, Khalid Farah, Abdullah Adina
Department of Paediatrics University of Malaya, Jalan Universiti, Kuala Lumpur, Wilayah Persekutuan, Malaysia.
Department of Primary Care Medicine, University of Malaya, Jalan Universiti, Kuala Lumpur, Wilayah Persekutuan, Malaysia.
Indian J Palliat Care. 2022 Jul-Sep;28(3):266-271. doi: 10.25259/IJPC_50_2021. Epub 2021 Dec 18.
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.
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.
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.
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.
孩子因重病过早离世可能是为人父母最痛苦的经历之一。本研究调查了患有危及生命疾病的孩子的父母在丧子后的临床体验，以便为优质护理提供建议。
采用半结构化深度访谈收集数据，访谈对象为孩子在访谈前至少已去世3个月的丧子父母。父母是从两家为患有危及生命疾病的儿童提供临终护理的机构中特意挑选出来的。采用主题分析法对数据进行分析。
数据分析揭示了三个主要主题：（1）临床沟通，（2）医疗基础设施，以及（3）医疗的非物质方面。发现的七个子主题如下：（1）诚实与清晰，（2）同理心，（3）跨学科沟通，（4）医院中的不便，（5）家庭姑息治疗，（6）疾病的经济负担，以及（7）心理社会和精神支持。
改善儿童及其家庭医疗保健的策略是多方面的。提供优质护理的基础是同情心；一个对儿童和家庭友好的医疗保健系统，拥有富有同情心的医护人员和富有同情心的机构政策，是实现优质医疗保健的重要组成部分。具有文化敏感性的心理社会、情感和精神支持需要作为标准护理加以整合。
