护理学报2025，Vol.32Issue(16)：11-16,6.DOI:10.16460/j.issn2097-6569.2025.16.011
肝豆状核变性患者照顾者不同阶段照顾困境与需求的质性研究
Challenges and needs across different stages for caregivers of patients with Wilson disease:a qualitative study
摘要
Abstract
Objective To explore the challenges and needs at different stages of caregivers of patients with Wilson disease(WD)based on timing theory,and provide basis for constructing targeted intervention programs.Methods We conducted a phenomenolog-ical research,and 41 caregivers of WD patients hospitalized in the neurology department of a tertiary grade-A comprehensive hospital in Anhui Province from July 2024 to February 2025 were selected as the subjects for semi-structured interviews.Colaizzi's seven step analysis was used to analyze the interview data.Results Five themes and fifteen sub-themes were summarized as follows.Diagnostic phase:Multiple emotional conflicts,trapped in confusion and coping difficulties;Stable phase:Disease progression anxiety compound-ed by role dysfunction and health literacy deficit;Preparation phase:Parallel concerns of inadequate caregiving capacity and multidi-mensional constraints;Adjustment phase:Deficient self-management skills with escalating needs for professional support;Adaptation phase:Employment/fertility/activities of daily living(ADL)challenges with strong demand for disease prioritization and research ad-vancement.Conclusion At different stages of WD,caregiving challenges and needs manifest as a complex,dynamic process.Medi-cal staff should develop tailored interventions for caregivers based on their stage-specific needs and difficulties,provide personalized professional support,reduce caregivers'burden,and promote patient recovery.关键词
肝豆状核变性/照顾者/时机理论/照顾困境/照顾需求/质性研究/护理Key words
Wilson disease/caregivers/timing theory/challenge in care/care need/qualitative research/care分类
医药卫生引用本文复制引用
王媛欣,占婷婷,占晨晨,彭程..肝豆状核变性患者照顾者不同阶段照顾困境与需求的质性研究[J].护理学报,2025,32(16):11-16,6.基金项目
安徽省高校科研项目重点项目(2024AH052735) （2024AH052735）
