Division of Hospital Medicine, Cincinnati Children's Hospital Medical Center (AM Jenkins), Cincinnati, Ohio; Department of Internal Medicine, University of Cincinnati College of Medicine (AM Jenkins), Cincinnati, Ohio.
Spina Bifida Coalition of Cincinnati (D Burns and R Horick), Cincinnati, Ohio.
Acad Pediatr. 2021 Jul;21(5):858-867. doi: 10.1016/j.acap.2021.02.002. Epub 2021 Feb 10.
Developing effective interventions to promote successful transition to adulthood for adolescents and young adults (AYA) with spina bifida (SB) requires input from SB community stakeholders, particularly AYA themselves. The goal of this study was to identify and prioritize facilitators and barriers of successful transition to a healthy adult life for AYA with SB.
We utilized concept mapping, a community-engaged research methodology. We recruited a purposeful sample of SB community stakeholders: AYA with SB, parents/caregivers, pediatric and adult health care providers, and community organizations. Participants generated ideas to open-ended prompts. A subset of participants sorted responses into groups of similar ideas. Multidimensional scaling and hierarchical cluster analysis were applied to generate cluster maps. The concept map was determined by identifying the optimal cluster number that qualitatively represented meaningful and distinct concepts. Concepts were rated by participants for importance and feasibility.
Participants generated 90 unique ideas that were then sorted. The research team chose a 10-cluster concept map: coordinated and comprehensive medical care, health and wellness, self-management, self-advocacy, skills to maximize independence, inclusivity and relationship supports, physical accessibility of the environment, employment, finances, and community- and school-based resources. Self-management, self-advocacy, and inclusivity and relationship supports were rated as both highly feasible and important.
By using concept mapping to engage diverse stakeholders, including people with intellectual, development, and physical disabilities, this study prioritized less traditional areas like inclusivity and relationship supports to focus improvement efforts relevant to AYA with SB becoming healthy adults.
为了制定有效的干预措施来促进患有脊柱裂（SB）的青少年和青年（AYA）成功过渡到成年期，需要来自 SB 社区利益相关者的投入，尤其是 AYA 本身。本研究的目的是确定并优先考虑促进 AYA 成功过渡到健康成年生活的促进因素和障碍。
我们采用了概念映射，一种社区参与的研究方法。我们招募了 SB 社区利益相关者的目的样本：患有 SB 的 AYA、父母/照顾者、儿科和成人保健提供者以及社区组织。参与者对开放性提示生成想法。一部分参与者将响应分类为相似想法的组。多维缩放和层次聚类分析用于生成聚类图。通过确定定性表示有意义和不同概念的最佳聚类数量来确定概念图。参与者对重要性和可行性对概念进行评分。
参与者生成了 90 个独特的想法，然后进行了分类。研究小组选择了一个 10 聚类概念图：协调和全面的医疗保健、健康和健康、自我管理、自我倡导、最大限度地提高独立性的技能、包容性和关系支持、环境的物理可达性、就业、财务以及社区和学校资源。自我管理、自我倡导以及包容性和关系支持被评为既高度可行又重要。
通过使用概念映射来吸引包括智力、发育和身体残疾在内的各种利益相关者，本研究优先考虑了不那么传统的领域，如包容性和关系支持，以集中精力改善与 SB AYA 成为健康成年人相关的努力。
