Tschamper Merete K, Wahl Astrid K, Jakobsen Rita, Larsen Marie H
Department of Interdisciplinary Health Sciences, Institute of Health and Society, University of Oslo, Oslo, Norway.
Division of Clinical Neuroscience, The National Centre for Epilepsy, Full Member of European Network on Rare and Complex Epilepsies, EpiCARE, Oslo University Hospital, Oslo, Norway.
J Clin Nurs. 2025 Jan 28. doi: 10.1111/jocn.17652.
(1) To codesign a health literacy intervention within a specialist healthcare setting to help the parents of children with epilepsy access, comprehend, use and communicate information and (2) to assess the intervention's feasibility by exploring stakeholders' perspectives on its usefulness, ease of use of trial methods and contextual factors impacting its execution.
A codesign participatory approach followed by a feasibility approach inspired by the OPtimising HEalth LIteracy and Access to Health Services (Ophelia) process for health literacy intervention development.
(1) The codesign approach included workshops with (a) multidisciplinary personnel (n = 9) and (b) parents (n = 12), along with (c) an interview with one regional epilepsy specialist nurse (n = 1). The participants discussed parents' health literacy needs on the basis of vignettes and brainstormed service improvements. A three-step intervention was subsequently designed. (2) The intervention's feasibility was assessed via interviews with six parents (n = 6), a focus group interview with study nurses, a short doctors survey and a log of time spent testing the intervention.
(1) The parents of first-time admitted children to a specialist epilepsy hospital were targeted for the intervention. Nurse-parent consultations were central to the intervention, activating parents in codeveloping and executing a tailored education plan. (2) Feasibility: parents (n = 6) experienced consultations and education plans that were beneficial for enhancing their self-efficacy in managing the child's condition. The study nurses (n = 3) acknowledged positive outcomes in streamlining patient education but felt that their training on the intervention methods was insufficient. Both parents and nurses identified limited personnel resources as a significant barrier to executing the intervention.
The codesigned intervention engaged nurses and parents in HL development despite system barriers. The parents experience enhanced self-efficacy in managing their child's condition. However, needs refinements and further feasibility tests are needed before future implementation.
The Consort Statement 2010 extension for reporting non-randomised pilot and feasibility studies was used to ensure the methodological quality of the study. A Consort Statement 2010 checklist is provided as an additional file.
The collaboration of parents within the target group, the providers involved and the project's steering committee was crucial in codesigning and evaluating this three-step intervention. Parents and multidisciplinary providers actively contributed through workshops, interviews and in discussion meetings. The study nurses testing the intervention played a key role in defining the documentation process for the codeveloped education plan.
This three-step health literacy intervention can positively impact parents' self-efficacy in managing their child's condition. Enhancing nurses' communication skills is essential for improving parents' health literacy, making it crucial to allocate resources for such training. The intervention content and strategies to meet parents' health literacy needs require refinement, with more provider involvement to better adapt it to the context. Future studies should focus on further feasibility testing by considering a more flexible time frame.
Open Science Framework: https://osf.io/fg9c7/.
（1）在专科医疗环境中共同设计一项健康素养干预措施，以帮助癫痫患儿的家长获取、理解、使用和交流信息；（2）通过探索利益相关者对其有用性、试验方法易用性以及影响其实施的背景因素的看法，评估该干预措施的可行性。
采用共同设计参与式方法，随后是受优化健康素养与健康服务获取（Ophelia）健康素养干预开发流程启发的可行性方法。
（1）共同设计方法包括与（a）多学科人员（n = 9）、（b）家长（n = 12）举办研讨会，以及（c）对一名地区癫痫专科护士进行访谈（n = 1）。参与者基于案例讨论家长的健康素养需求，并就服务改进进行头脑风暴。随后设计了一个三步干预措施。（2）通过对六名家长进行访谈（n = 6）、对研究护士进行焦点小组访谈、对医生进行简短调查以及记录测试干预措施所花费的时间，评估干预措施的可行性。
（1）该干预措施的目标对象是首次入住专科癫痫医院的患儿家长。护士 - 家长咨询是干预措施的核心，促使家长共同制定并执行量身定制的教育计划。（2）可行性：六名家长体验到咨询和教育计划有助于提高他们管理孩子病情的自我效能感。三名研究护士承认在简化患者教育方面取得了积极成果，但认为他们对干预方法的培训不足。家长和护士都认为人员资源有限是实施干预措施的重大障碍。
尽管存在系统障碍，但共同设计的干预措施让护士和家长参与到健康素养的发展中。家长在管理孩子病情方面的自我效能感有所增强。然而，在未来实施之前需要进行改进和进一步的可行性测试。
使用2010年《CONSORT声明》扩展版来报告非随机试点和可行性研究，以确保研究的方法学质量。提供了一份2010年《CONSORT声明》清单作为补充文件。
目标群体中的家长、相关提供者以及项目指导委员会之间的合作对于共同设计和评估这一三步干预措施至关重要。家长和多学科提供者通过研讨会、访谈和讨论会议积极做出贡献。测试干预措施的研究护士在确定共同制定的教育计划的记录流程方面发挥了关键作用。
这一三步健康素养干预措施可对家长管理孩子病情的自我效能感产生积极影响。提高护士的沟通技巧对于提高家长的健康素养至关重要，因此为这种培训分配资源至关重要。满足家长健康素养需求的干预内容和策略需要改进，需要更多提供者参与以更好地使其适应实际情况。未来的研究应通过考虑更灵活的时间框架来专注于进一步的可行性测试。
开放科学框架：https://osf.io/fg9c7/
