TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital, Nesodden, Norway.
The Institute of Public Health, Norwegian Knowledge Centre for the Health Services, Oslo, Norway.
Orphanet J Rare Dis. 2023 Oct 17;18(1):327. doi: 10.1186/s13023-023-02935-8.
The purpose of this study was twofold: (i) To assess the parents' experiences and perception of participating in a "Parental Intervention Program for Preschool children with Rare Diseases" (PIPP-RDs). (ii) To evaluate which elements of the PIPP-RDs that the parents emphasized as important for improving their health literacy related to facilitating the transition of their children from kindergarten to school.
A mixed methods evaluation study was conducted ten and eleven months post-intervention, integrating an online quantitative survey combined with individual semi-structured interviews. Twenty-two parents participated in individual interviews, of these 18 also responded to the online questionnaire survey.
All parents that participated in this study reported that the information conveyed at the program was of great value and utility, 88% reported significantly alleviated stress associated to their childs school-start, 84% indicated had improved the school-home collaboration and 84% reported that it had encouraged them to establish contact with the school prior to school commencement. From the qualitative data five main themes emerged: (i) Competence and Knowledge Acquisition, (ii) Becoming more Prepared and Relaxed, (iii) Achieved Realistic Expectations, (iv) Enhanced Communication Skills, (v) Increased Health Literacy and Self-Efficacy. The evaluative findings suggest that this invention program has notably improved the parents' aptitude for school interaction, enhanced the adaptions according to childrens needs for accommodations, and has provided reassurance in the school-home collaboration. Parents also described increased self-confidence and self-efficacy in managing the school start for children with RDs.
The highly positive response of participating in PIPP-RDs may not only reflect the merits of the program`s content, but also underscore the significant needs for such support during the transition to school for parents of children with RDs. Comparable initiatives, oriented towards enhancing the health literacy and empowering the parents, are anticipated to yield similarly favourable results. We argue that intervention program amalgamate pertinent information, group discourse, and workshops on school-related issues, alongside opportunities for parents to meet other parents in similar situations.
本研究旨在实现两个目标：（i）评估参与“学前罕见病儿童家长干预计划（PIPP-RDs）”的家长的经历和感受。（ii）评估 PIPP-RDs 的哪些元素对提高家长与促进孩子从幼儿园过渡到学校相关的健康素养至关重要。
在干预后 10 个月和 11 个月进行了混合方法评估研究，整合了在线定量调查和个人半结构化访谈。22 名家长参加了个人访谈，其中 18 名家长还对在线问卷进行了回复。
所有参与本研究的家长均报告称，该计划传达的信息非常有价值和实用，88%的家长报告称与孩子入学相关的压力显著减轻，84%的家长表示改善了家校合作，84%的家长表示这鼓励他们在孩子入学前与学校建立联系。从定性数据中得出了五个主要主题：（i）能力和知识获取，（ii）更有准备和放松，（iii）实现现实期望，（iv）增强沟通技巧，（v）提高健康素养和自我效能。评估结果表明，该创新计划显著提高了家长与学校互动的能力，增强了根据孩子的需求进行调整的能力，并在学校-家庭合作中提供了保证。家长们还表示，他们在管理 RD 儿童入学方面的自信心和自我效能感有所提高。
参与 PIPP-RDs 的高度积极反应不仅反映了该计划内容的优点，还强调了 RD 儿童家长在过渡到学校期间对这种支持的巨大需求。预计类似的以提高健康素养和赋予家长权力为导向的倡议将产生类似的积极成果。我们认为，干预计划应整合相关信息、小组讨论、与学校相关的问题研讨会，以及让家长有机会与其他处于类似情况的家长见面的机会。
