Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Nov 30, 2023
Date Accepted: Oct 26, 2024
Digital health program to support family caregivers of children under growth hormone therapy: a qualitative feasibility study
ABSTRACT
Background:
Caregivers of children with growth hormone deficiency often face emotional challenges (e.g., stress) associated with their children's health condition. 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 wellbeing 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 wellbeing support caregivers of children with growth-related problems is an issue that needs to be clarified.
Objective:
The aim is to gather qualitative information to better understand individualized experiences of caregiving of children undergoing GHt and perceived barriers/facilitators for the adoption of a mHealth solution called Adhera Caring Digital Program
Methods:
10 family caregivers were recruited at Miguel Servet Children's Hospital, and they engaged with the Adhera Caring Digital Program for one month. The Adhera Caring Digital Program is a mobile-based digital intervention focused on promoting the overall wellbeing of family caregivers which provides access to personalized education, motivational messages and mental wellbeing exercises such as mindfulness or respiratory exercises. Subsequently, an individual semi-structured interview was performed to gather qualitative user experience information.
Results:
The digital intervention was well received and defined as useful, easy to use, and understandable, covering all the pain points expressed by caregivers. It was also reported that it would be very useful at the beginning of the treatment and, for some families, became a natural tool that enhanced the parent-child relationship.
Conclusions:
The Adhera Caring Digital Program is a promising tool that adds value to the patient and caregiver journey by improving the management of the growth hormone deficiency condition while promoting the overall wellbeing of family caregivers. Clinical Trial: ClinicalTrials.gov Identifier: NCT04812665
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