Li Lin, Carter Nancy, Gorter Jan Willem, Till Linda, White Marcy, Strachan Patricia H
School of Nursing, McMaster University, Hamilton, Ontario, Canada.
University Medical Center Utrecht, Utrecht, The Netherlands.
Health Expect. 2025 Feb;28(1):e70077. doi: 10.1111/hex.70077.
The transition from paediatric to adult health care (i.e., 'health care transition') poses many challenges for youth with medical complexity (YMC) and their families. YMC need specific approaches to supporting transition, tailored to individual youth and family contexts. In this study, we examine the contextual factors influencing families' transition experiences and describe their recommendations for improving the experience.
We conducted a qualitative explanatory case study in Ontario, Canada. We completed 21 interviews with 17 participants (11 mothers, 2 fathers, 2 YMC, 2 siblings) from 11 families of YMC. Six YMC (55%) were under 18 years of age (pre-transfer) and five (45%) were aged 18 years and older (post-transfer). Analytic approaches included reflexive thematic analysis and directed content analysis.
Participants described how the interplay of personal and environmental factors impacted their transition experiences. Recommendations for health care providers focused on providing instrumental and psychological support, advocacy and care continuity. Families expressed a need for better access to information and support from primary care providers. System-level recommendations included streamlining transition processes, improving adult health care services and expanding community supports. A socioecological model is presented to guide health care providers and decision makers in assessing and tackling the challenges faced by YMC and their families during transition.
Findings highlight the complexity and scope of issues surrounding the transition to adult care for YMC in Ontario, with evidence of major gaps in services across multiple sectors and settings. Ongoing efforts are needed to move evidence into practice and advocate for more equitable and responsive care for YMC during the transition and beyond.
The research team included two parent co-researchers with lived experience, who contributed to protocol refinement, funding acquisition, recruitment, findings interpretation and ongoing knowledge translation efforts.
从儿科医疗向成人医疗的过渡（即“医疗保健过渡”）给患有复杂疾病的青少年（YMC）及其家庭带来了诸多挑战。YMC 需要针对个人情况和家庭背景量身定制的特殊方法来支持过渡。在本研究中，我们考察了影响家庭过渡经历的背景因素，并描述了他们对改善这一经历的建议。
我们在加拿大安大略省开展了一项定性解释性案例研究。我们对来自 11 个 YMC 家庭的 17 名参与者（11 位母亲、2 位父亲、2 名 YMC、2 名兄弟姐妹）进行了 21 次访谈。6 名 YMC（55%）年龄在 18 岁以下（转诊前），5 名（45%）年龄在 18 岁及以上（转诊后）。分析方法包括反思性主题分析和定向内容分析。
参与者描述了个人因素和环境因素的相互作用如何影响他们的过渡经历。对医疗保健提供者的建议集中在提供工具性和心理支持、宣传和护理连续性方面。家庭表示需要更好地获取初级保健提供者的信息和支持。系统层面的建议包括简化过渡流程、改善成人医疗服务和扩大社区支持。提出了一个社会生态模型，以指导医疗保健提供者和决策者评估和应对 YMC 及其家庭在过渡期间面临的挑战。
研究结果凸显了安大略省 YMC 向成人护理过渡相关问题的复杂性和范围，证据表明多个部门和环境中存在重大服务差距。需要持续努力将证据转化为实践，并倡导在过渡期间及之后为 YMC 提供更公平、更具响应性的护理。
研究团队包括两名有实际经验的家长共同研究人员，他们参与了方案完善、资金获取、招募、结果解释和持续的知识转化工作。
