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Digital Health Program to Support Family Caregivers of Children Undergoing Growth Hormone Therapy: Qualitative
Alba Jiménez-Díaz1, Maitena Pierantonelli1, Patricia Morte Coscolín2,3
1Departamento de Personalidad, Evaluación y Tratamientos Psicológicos, Universitat de València, Valencia, Spain.
Insights
Mobile health solutions can support caregivers of children with growth hormone deficiency. The Adhera Caring Digital Program (ACDP) improved caregiver well-being and treatment management.
Area of Science:
- Pediatric Endocrinology
- Digital Health Interventions
- Caregiver Support
Background:
- Caregivers of children with growth hormone deficiency experience significant emotional challenges.
- These challenges can negatively impact children's treatment adherence and quality of life.
- Multidimensional approaches are needed to support caregiver well-being for optimal pediatric health outcomes.
Purpose of the Study:
- To qualitatively explore caregiver experiences with children undergoing growth hormone therapy (GHt).
- To assess barriers and facilitators for adopting a mobile health (mHealth) solution, the Adhera Caring Digital Program (ACDP).
Main Methods:
- 10 family caregivers used the ACDP for one month.
- ACDP provided personalized education, motivational messages, and mental well-being exercises.
- Individual semistructured interviews gathered qualitative user experience data.
Main Results:
- The ACDP was well-received, found useful, easy to use, and understandable.
- The program addressed caregiver difficulties and was particularly helpful early in treatment.
- Some families reported ACDP strengthened the parent-child relationship.
Conclusions:
- The ACDP is a promising, well-accepted tool for enhancing patient and caregiver experiences.
- It effectively supports the management of growth hormone deficiency.
- The intervention promotes the overall well-being of family caregivers.
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.
