Digital Health Platform for Emotional and Self-Management Support of Caregivers of Children Receiving Growth Hormone Treatment

Abstract

In recent years there has been growing research on the combination of evidence-based behavioral change techniques with mobile-based recommender systems. In this paper, we have focused on understanding the psychological burdens experienced by caregivers of children undergoing growth hormone treatment (GHt) and the perceived barriers to and drivers of the adoption of a digital health solution. This is a mixed-methods formative research study looking into technical acceptance aspects of using digital health for the emotional support of parents of children undergoing GHt. After one month using the ADHERA CARING platform (Adhera Health, Inc., Palo Alto, CA), individual semi-structured interviews were conducted. ADHERA CARING provides tailored emotional and self-management support to caregivers of children undergoing GHt to improve adherence to treatment through positive education, personalized motivational messages, and emotional support. A preliminary thematic analysis and categorization were carried out, based on the Behavioral Intervention Technology (BIT) model. The majority of participants were female. All caregivers positively valued having the tool, especially at the beginning of treatment. Information provided in the educational module was useful and improved self-efficacy. Motivational messages contributed to commitment and reinforced the educational content, thus promoting continuity of treatment and potentially improving treatment efficacy. Most participants (n=10, 80%) accessed all educational units and completed all the 27 quiz questions. Regarding the motivational messages, the overall average rating was 4.55 out of 5.00. ADHERA CARING has the potential to help caregivers to understand the treatment journey. Nevertheless, users have identified that some types of educational content are more valuable at specific stages of the treatment journey, which suggests that personalization of educational content is required to adapt to different stages of the patient journey.