Bihari Allison, Goodman Karen J, Wine Eytan, Seow Cynthia H, Kroeker Karen I
University of Alberta, Canada.
University of Calgary, Canada.
J Health Psychol. 2025 Feb;30(2):310-323. doi: 10.1177/13591053241237861. Epub 2024 Mar 24.
Parents of young adults with chronic disease are important stakeholders in their child's transition from pediatric to adult care. There remains a gap in characterizing the parent experience during transition. This study describes the experiences of 13 mothers of young adults with inflammatory bowel disease during their child's transition. Most parents expressed fear and sadness about their child transitioning. Themes relating to involvement in their child's adult care included: direct involvement (sub-themes: disease management; logistics of care); and indirect involvement. Reasons for involvement included themes of parent's feelings and child's circumstances. Themes of involvement were discussed in terms of previous research on parenting of children with chronic disease. We suggest that future efforts focus on improving empathy and understanding toward parents of transitioning children and providing resources on how they can best support their child during transition and transfer to adult care.
患有慢性病的年轻人的父母是其子女从儿科护理过渡到成人护理阶段的重要利益相关者。在描述父母在过渡期间的经历方面仍存在差距。本研究描述了13位患有炎症性肠病的年轻人的母亲在其子女过渡期间的经历。大多数父母对孩子的过渡表达了恐惧和悲伤。与参与孩子成人护理相关的主题包括：直接参与（子主题：疾病管理；护理安排）；以及间接参与。参与的原因包括父母的感受和孩子的情况等主题。根据先前关于慢性病患儿养育的研究对参与主题进行了讨论。我们建议未来的工作应着重提高对处于过渡阶段孩子的父母的同理心和理解，并提供有关他们如何在过渡和转至成人护理期间最好地支持孩子的资源。
