Lin Jody L, Devereaux Tsivya, Simon Tamara D, Kaphingst Kimberly A, Zhu Angela, Narayanan Unni, Berry Andrew B L, Eppich Kaleb G, Stoddard Greg, Smith John T, Andras Lindsay, Heflin John, Keenan Heather T, Asch Steven M, Fagerlin Angela
Division of Pediatric Hospital Medicine, Department of Pediatrics, University of Utah, Salt Lake City, UT.
School of Medicine, University of Utah, Salt Lake City, UT.
J Pediatr. 2025 Jan;276:114366. doi: 10.1016/j.jpeds.2024.114366. Epub 2024 Oct 19.
To uncover the values and preferences of the caregivers for children with medical complexity using the test case of surgical treatment decision-making for pediatric neuromuscular scoliosis that will inform the future development of a decision support tool in this population.
We conducted a qualitative study of semistructured interviews of English- and Spanish-speaking caregivers of children with neuromuscular scoliosis from 2 geographically distinct children's hospitals. We used purposive sampling of language and treatment options selected to capture diverse experiences. Analysis was on the basis of grounded theory with synthesized caregiver values and preferences themes.
From 47 participants, we completed 41 interviews (9 in Spanish). Caregivers had a mean age of 43.2 years, were mostly White (66%), and had children with a mean age of 15.6. In total, 64% chose surgery. The following values and preferences were important to many caregivers: reducing scoliosis-related pain, minimizing mobility limitations to optimize socioemotional quality of life, limiting the impact of comorbidities on overall quality of life, information provided by peer support, the uncertainty of outcomes due to underlying comorbidities, and the uncertainty related to the anticipated progression of their child's scoliosis curve. Caregivers experienced immense uncertainty related to treatment outcomes due to their child's comorbidities.
Caregivers of children with medical complexity may benefit from decision support that includes both values clarification exercises to help caregivers identify what of the many possible values and preferences are important to them and novel methods to communicate uncertainty in the care of CMC.
以小儿神经肌肉型脊柱侧弯手术治疗决策为例，揭示患有复杂疾病儿童的照料者的价值观和偏好，为该人群决策支持工具的未来发展提供参考。
我们对来自两家地理位置不同的儿童医院、讲英语和西班牙语的神经肌肉型脊柱侧弯儿童的照料者进行了半结构化访谈的定性研究。我们采用有目的的语言和治疗方案抽样，以获取不同的经历。分析基于扎根理论，综合照料者的价值观和偏好主题。
在47名参与者中，我们完成了41次访谈（9次为西班牙语访谈）。照料者的平均年龄为43.2岁，大多为白人（66%），其子女的平均年龄为15.6岁。共有64%的人选择了手术。以下价值观和偏好对许多照料者很重要：减轻与脊柱侧弯相关的疼痛、将行动限制降至最低以优化社会情感生活质量、限制合并症对总体生活质量的影响、同伴支持提供的信息、潜在合并症导致的结果不确定性以及与其孩子脊柱侧弯曲线预期进展相关的不确定性。由于孩子的合并症，照料者在治疗结果方面经历了巨大的不确定性。
患有复杂疾病儿童的照料者可能会从决策支持中受益，这种支持既包括帮助照料者明确众多可能的价值观和偏好中哪些对他们很重要的价值观澄清练习，也包括传达复杂疾病护理中不确定性的新方法。
