应对(心理学)
定性研究
疾病
探索性研究
家庭照顾者
建设性的
心理学
医学
护理部
临床心理学
过程(计算)
社会学
人类学
社会科学
病理
计算机科学
操作系统
作者
Priya Baby,Priya Treesa Thomas,P. Binesha,J. Jobimol,Gargi S. Kumar,M. Arun,Nitish Kamble,Ravi Yadav,Pramod Kumar Pal
标识
DOI:10.1097/jnn.0000000000000794
摘要
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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