Lei Yang, Yan Jiang, Wenjuan Shao, Weili Shen, Qianyi Xiao, Lingyan Fan
Department of Orthopedics, Shanghai Children's Hospital, School of Medicine, Shanghai Jiao Tong University, Shanghai, China.
Front Pediatr. 2025 May 9;13:1561246. doi: 10.3389/fped.2025.1561246. eCollection 2025.
To understand, comprehensively, care experiences of caregivers for children with developmental dislocation of the hip in Tibet, China.
Postoperative rehabilitation for children with developmental dislocation of the hip (DDH) may last for several months to years. Even after discharge, recovery is often partial. It is important to note that despite optimal surgical treatment, lifelong residual issues may persist, such as limping, chronic pain, or early-onset osteoarthritis. Home care is critical in postoperative recovery. Family as the basic unit of home-based care for patients, many measures are inevitably carried out in the family environment and rely on family caregivers to provide. This requires caregivers to pay long-term and high attention, posing significant challenges to caregiving capacity.
A convergent mixed-methods.
Caregivers ( = 76) completed the Chinese version of the Family Caregiver Care Ability Scale, the Zarit Caregiver Burden Scale and 12 participated in semi-structured interviews from September, 2023 to February 2024. Descriptive statistics and Pearson correlation analysis were used for quantitative analysis, thematic analysis for qualitative analysis. Both quantitative and qualitative data were merged and integrated for mixed-methods analysis.
Low caregiver capacity and moderate caregiver burden scores were reported. Four themes emerged from care experiences: different emotions at different stages (initial worry, backend trust), caregiving process overwhelmed (role conflict, lack of caregiving capacity), insufficient information (disease-specific information, actual care information), and social support.
This study is the first to use this mixed-methods design to analyze the current state of care and burden among family caregivers of children with developmental dislocation of the hip in Chinese highland region-Tibet. The combined results showed that qualitative results converged with quantitative results in terms of emotional changes, role burden, lack of disease-specific information, and social support; qualitative results complemented quantitative results in terms of caregiving capacity deficits and lack of actual care information to explain the quantitative results. The quantitative findings also emphasized the link between social support in terms of caregiving capacity and caregiving burden. These results guide future research to promote rehabilitation and improve quality of life for affected children and families.
全面了解中国西藏地区发育性髋关节脱位患儿照顾者的照顾经历。
发育性髋关节脱位（DDH）患儿术后康复可能持续数月至数年。即使出院后，恢复往往也是不完全的。需要注意的是，尽管进行了最佳手术治疗，仍可能存在终身残留问题，如跛行、慢性疼痛或早发性骨关节炎。家庭护理在术后恢复中至关重要。家庭作为患者居家护理的基本单位，许多措施不可避免地要在家庭环境中进行，并依赖家庭照顾者提供。这要求照顾者长期高度关注，对照顾能力构成重大挑战。
聚合性混合方法。
2023年9月至2024年2月，76名照顾者完成了中文版家庭照顾者照顾能力量表、扎里特照顾者负担量表，12名参与了半结构化访谈。采用描述性统计和Pearson相关分析进行定量分析，主题分析进行定性分析。定量和定性数据合并并整合进行混合方法分析。
报告显示照顾者能力较低，照顾者负担得分中等。照顾经历出现四个主题：不同阶段的不同情绪（初期担忧、后期信任）、照顾过程不堪重负（角色冲突、照顾能力不足）、信息不足（疾病相关信息、实际护理信息）和社会支持。
本研究首次采用这种混合方法设计，分析中国高原地区西藏发育性髋关节脱位患儿家庭照顾者的护理现状和负担。综合结果表明，定性结果在情绪变化、角色负担、疾病相关信息缺乏和社会支持方面与定量结果趋同；定性结果在照顾能力缺陷和实际护理信息缺乏方面补充了定量结果，以解释定量结果。定量研究结果还强调了照顾能力方面的社会支持与照顾负担之间的联系。这些结果为未来促进康复及改善受影响儿童和家庭生活质量的研究提供了指导。
