Joren Chantal Y, Kars Marijke C, Kremer Leontien C M, Hofman Suzanne C, Rippen-Wagner Hester, Slingerland-Blom Ria, van der Velden Chantal, Schuiling-Otten Meggi, Verhagen A A Eduard, Aris-Meijer Judith L
University of Groningen, University Medical Center Groningen, Beatrix Children's Hospital, Hanzeplein 1, Groningen 9713 GZ, The Netherlands.
Center of Expertise in Palliative Care Utrecht, Julius Center of Health and Primary Care, UMC Utrecht, Utrecht, The Netherlands.
Palliat Care Soc Pract. 2024 Sep 18;18:26323524241277572. doi: 10.1177/26323524241277572. eCollection 2024.
The Individual Care Plan (ICP) for pediatric palliative care translates the general guideline recommendations into a personalized plan for the child. Various documents exist in pediatrics globally, aimed at facilitating anticipatory care or coordinating end-of-life care. The ICP aims both, but user experiences have not been studied post-development.
The overall aim is to enhance knowledge and understanding of the content of the ICP from the perspectives of parents and healthcare professionals (HCPs).
We conducted a mixed-method study using a convergent parallel design consisting of questionnaires and individual and focus group interviews among parents and HCPs having user experience with the ICP. The questionnaire and interview data were analyzed separately. Quantitative data were descriptively analyzed using mean, ±SD, and median. Qualitative data were thematically analyzed. A narrative approach and joint display were used to describe the results.
In total, 27 parents and 161 HCPs participated. Overall, the content of the ICP was seen as important and complete, but changes and additions were called for on language, structure, and content. The chapter on the needs and wishes of child and parents was considered most important. HCPs would like to see this chapter expanded to incorporate more advance care planning outcomes, and parents wished for this chapter to reflect better who their child is. HCPs mentioned missing a chapter for palliative sedation, mainly to guide other HCPs. The ICP was appraised as not user-friendly and might possibly improve by making the ICP available in a secure digital environment.
To meet the needs of parents and HCPs considering importance and completeness of the content of the ICP and its user-friendliness, changes are necessary in the content of the ICP, and preferably the ICP should be made digitally available. Although various documents exist globally to facilitate anticipatory care or coordinating end-of-life care, it appears that the combination of describing the values and preferences of the child and parents, along with medical decisions and life-sustaining treatments, makes the ICP a unique and comprehensive care plan.
儿科姑息治疗的个性化护理计划（ICP）将一般指南建议转化为针对儿童的个性化计划。全球儿科领域存在各种文件，旨在促进预期护理或协调临终护理。ICP兼顾这两方面，但在开发后尚未对用户体验进行研究。
总体目标是从家长和医疗保健专业人员（HCP）的角度增强对ICP内容的认识和理解。
我们采用了一种混合方法研究，使用收敛平行设计，包括对有ICP使用经验的家长和HCP进行问卷调查以及个人和焦点小组访谈。问卷和访谈数据分别进行分析。定量数据采用均值、±标准差和中位数进行描述性分析。定性数据采用主题分析法。采用叙述性方法和联合展示来描述结果。
共有27名家长和161名HCP参与。总体而言，ICP的内容被认为是重要且完整的，但在语言、结构和内容方面需要进行更改和补充。关于儿童和家长需求与愿望这一章被认为是最重要的。HCP希望看到这一章得到扩展，纳入更多的预立医疗计划结果，而家长希望这一章能更好地反映他们的孩子是什么样的。HCP提到缺少关于姑息性镇静的章节，主要是为了指导其他HCP。ICP被评价为不便于用户使用，通过在安全的数字环境中提供ICP可能会有所改进。
为了满足家长和HCP对ICP内容的重要性、完整性及其用户友好性的需求，ICP的内容有必要进行更改，最好以数字形式提供ICP。尽管全球存在各种文件以促进预期护理或协调临终护理，但将描述儿童和家长的价值观及偏好与医疗决策和维持生命的治疗相结合，似乎使ICP成为一个独特而全面的护理计划。
