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支持接受生长激素治疗儿童的家庭照顾者的数字健康计划:定性可行性研究

Digital Health Program to Support Family Caregivers of Children Undergoing Growth Hormone Therapy: Qualitative Feasibility Study.

作者信息

Jiménez-Díaz Alba, Pierantonelli Maitena, Morte Coscolín Patricia, Salinas-Uhalte Amaia, Quer-Palomas Silvia, Rivera-Romero Octavio, Herrero Rocío, Fernández-Luque Luis, Baños Rosa, Berrios Ricardo C, de Arriba Antonio

机构信息

Departamento de Personalidad, Evaluación y Tratamientos Psicológicos, Universitat de València, Valencia, Spain.

Unidad de Endocrinología Pediátrica, Hospital Universitario Miguel Servet, Zaragoza, Spain.

出版信息

JMIR Pediatr Parent. 2025 Feb 5;8:e55023. doi: 10.2196/55023.

Abstract

BACKGROUND

Caregivers of children with growth hormone deficiency often face emotional challenges (eg, stress) associated with their children's health conditions. This psychological burden might affect children's adherence to treatment and hinder their health-related quality of life (HrQoL). This assumption is leading to seriously considering multidimensional clinical approaches to pediatric health conditions where the emotional well-being of caregivers should be accounted for to optimize children's health outcomes. Novel mobile health (mHealth) solutions based on emotional and behavioral change techniques can play a promising role because they are increasingly used within different health areas to support adaptive psychological functioning. However, whether and how mHealth solutions of this type of emotional well-being support caregivers of children with growth-related problems is an issue that needs to be clarified.

OBJECTIVE

This study aimed to gather qualitative information to better understand individualized experiences of caregiving of children undergoing growth hormone therapy (GHt) and perceived barriers or facilitators for the adoption of an mHealth solution called Adhera Caring Digital Program (ACDP).

METHODS

A total of 10 family caregivers were recruited at Miguel Servet Children's Hospital, and they engaged with the ACDP for 1 month. The ACDP is a mobile-based digital intervention focused on promoting the overall well-being of family caregivers which provides access to personalized education, motivational mobile-based messages, and mental well-being exercises such as mindfulness or respiratory exercises. Subsequently, an individual semistructured interview was performed to gather qualitative user experience information.

RESULTS

The digital intervention was well-received. The ACDP was found to be useful, easy to use, and understandable, addressing all the difficulties expressed by caregivers. It was also noted to be particularly helpful at the beginning of the treatment and, for some families, became a natural tool that strengthened the parent-child relationship.

CONCLUSIONS

The ACDP is a promising and well-accepted tool that enhances the experience of patients and caregivers. It improves the management of growth hormone deficiency and promotes the overall well-being of family caregivers.

TRIAL REGISTRATION

ClinicalTrials NCT04812665; https://clinicaltrials.gov/study/NCT04812665.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s12911-022-01935-1.

摘要

背景

生长激素缺乏症患儿的照料者常常面临与孩子健康状况相关的情感挑战(如压力)。这种心理负担可能会影响孩子对治疗的依从性,并阻碍他们的健康相关生活质量(HrQoL)。这一假设促使人们认真考虑针对儿科健康状况的多维度临床方法,其中应考虑照料者的情感健康,以优化孩子的健康结果。基于情感和行为改变技术的新型移动健康(mHealth)解决方案可能会发挥重要作用,因为它们在不同健康领域越来越多地被用于支持适应性心理功能。然而,这类关注情感健康的mHealth解决方案是否以及如何为有生长相关问题的患儿照料者提供支持,这是一个需要阐明的问题。

目的

本研究旨在收集定性信息,以更好地了解接受生长激素治疗(GHt)患儿的个体化照料体验,以及采用一种名为Adhera Caring Digital Program(ACDP)的mHealth解决方案的感知障碍或促进因素。

方法

在米格尔·塞尔维特儿童医院共招募了10名家庭照料者,他们使用ACDP 1个月。ACDP是一种基于移动设备的数字干预措施,专注于促进家庭照料者的整体健康,提供个性化教育、基于移动设备的激励信息,以及正念或呼吸练习等心理健康练习。随后,进行了一次个人半结构化访谈,以收集定性的用户体验信息。

结果

该数字干预措施受到好评。ACDP被认为有用、易于使用且易于理解,解决了照料者表达的所有困难。还指出它在治疗开始时特别有帮助,对一些家庭来说,它成为了加强亲子关系的自然工具。

结论

ACDP是一种有前景且广受欢迎的工具,可提升患者和照料者的体验。它改善了生长激素缺乏症的管理,并促进了家庭照料者的整体健康。

试验注册

ClinicalTrials NCT04812665;https://clinicaltrials.gov/study/NCT04812665。

国际注册报告识别码(IRRID):RR2-10.1186/s12911-022-01935-1。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c729/11840389/df3e3f4347fc/pediatrics_v8i1e55023_fig1.jpg

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