一项探索晚期威尔逊病患者护理经验的定性研究。

Priya Baby, Priya Treesa Thomas, Binesha P, Jobimol J, Gargi S Kumar, Arun M, Nitish Kamble, Ravi Yadav, Pramod K Pal
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摘要

摘要:背景:威尔逊病(WD)是一种以铜代谢障碍为特征的罕见疾病。该病通常在儿童中确诊,它有几个独特的特征,会给护理者带来不同的体验。该病的晚期阶段相当具有挑战性,而护理人员在这一阶段的护理经验还未得到充分探索。方法:本研究是一项探索性定性调查,通过深入访谈了解在一家三级医院接受神经姑息治疗的晚期 WD 患儿的家庭照顾者的经历。对 7 位家庭护理者的访谈进行了记录、转录,并采用归纳和解释的方法进行了分析。结果:研究中的家庭照护者主要是母亲。出现的主要主题有:作为父母和照顾者、与疾病相关的不确定性、财务影响、了解疾病动态、建设性应对策略以及大家庭网络和社会影响。结论:晚期 WD 患儿家庭照顾者的经历和遭遇是多方面的。他们具有挑战性的经历凸显了扩展支持性服务和神经姑息性护理的必要性,以帮助护理人员和家庭,并引导儿童的治疗和康复过程。
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A Qualitative Study Exploring Experiences in Caregiving for Patients With Advanced Wilson Disease.

Abstract: BACKGROUND: Wilson disease (WD) is a rare disease characterized by impaired copper metabolism. It is usually diagnosed in children and has several distinct attributes that can make the caregiving experience different. The advanced stage of the illness is quite challenging, and caregiver experiences during this phase of the disease are underexplored. METHODS: The present study is an exploratory qualitative investigation with in-depth interviews aiming to understand the experiences of family caregivers of children with advanced WD receiving neuropalliative care services at a tertiary care hospital. Interviews from 7 family caregivers were recorded, transcribed, and analyzed using an inductive and interpretive approach. RESULTS: Family caregivers in the study were predominantly mothers. The major themes that emerged are: being a parent and the caregiver, uncertainty related to illness, financial implications, understanding the disease dynamics, constructive coping strategies, and extended family networks and societal influences. CONCLUSION: The experiences and the encounters of family caregivers of children with advanced WD are multifaceted. Their challenging experiences underscore the need for extended supportive services and neuropalliative nursing care to assist the caregivers and families, and navigate the process of treatment and rehabilitation for the child.

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