Digital health for emotional and self-management support of caregivers of children receiving growth hormone treatment: a feasibility study protocol.

BACKGROUND: Caregivers of children undergoing growth hormone treatment often face stress and stigma. In this regard, family-centered approaches are increasingly considered, wherein caregivers' mental wellbeing is taken into account to optimize children's health-related outcomes and behaviors (e.g., treatment adherence). Here, mindfulness and parenting-based programs have been developed to support the mental wellbeing of caregivers and, in turn, promote richer interactions with the children. Nevertheless, this type of program can face drawbacks, such as the scheduling and availability of family members. Recent digital health (DH) solutions (e.g., mobile apps) are showing promising advantages as self-management support tools for improving wellbeing and behaviors related to the treatments. Although, further evidence is necessary in the field of Growth Hormone Treatment (GHt). Accordingly, this study aims to examine the usability of a mobile DH solution and the feasibility of a DH intervention designed to promote emotional and mental wellbeing of caregivers of children undergoing GHt. METHODS: This is a prospective mixed-methods (qualitative-quantitative) exploratory study composed of two sub-studies, including caregivers of children undergoing GHt. Sub-study one (SS1; n = 10) focuses on the usability of the DH solution (detecting potential barriers and facilitators) and an ad hoc semi-structured interview will be administered to the caregivers after using the DH solution for one month. Sub-study two (SS2; n = 55) aims to evaluate the feasibility of the DH intervention on caregivers' perceived distress, positive affectivity, mental wellbeing, self-efficacy, together with the children's quality of life and treatment adherence. All these parameters will be assessed via quantitative methods before and after 3-months of the DH intervention. Usability and engagement will also be assessed during and at the end of the study. RESULTS: It is expected that significant amounts of data will be captured with regards of the feasibility of the DH solution. DISCUSSION: The manuscript provides a complete protocol for a study that will include qualitative and quantitative information about, on one hand, the user-friendliness of the DH solution, and on the other, the effects on caregivers' emotional, as well as, behavioral parameters in terms of the usability and engagement to the DH solution. The findings will contribute to the evidence planning process for the future adoption of digital health solutions for caregiver support and better health-related outcomes. Trial registration ClinicalTrials.gov, ID: NCT04812665.

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

In this demo, we provide an overview of the digital platform ADHERA CARING which has been used for an intervention designed for emotional and self-management support of caregivers of children receiving growth hormone treatment (GHt). 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. This digital intervention has already been piloted in a clinical setting as part of an ongoing feasibility clinical study (NCT04812665).

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

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.

Status and Recommendations of Technological and Data-Driven Innovations in Cancer Care: Focus Group Study.

BACKGROUND: The status of the data-driven management of cancer care as well as the challenges, opportunities, and recommendations aimed at accelerating the rate of progress in this field are topics of great interest. Two international workshops, one conducted in June 2019 in Cordoba, Spain, and one in October 2019 in Athens, Greece, were organized by four Horizon 2020 (H2020) European Union (EU)-funded projects: BOUNCE, CATCH ITN, DESIREE, and MyPal. The issues covered included patient engagement, knowledge and data-driven decision support systems, patient journey, rehabilitation, personalized diagnosis, trust, assessment of guidelines, and interoperability of information and communication technology (ICT) platforms. A series of recommendations was provided as the complex landscape of data-driven technical innovation in cancer care was portrayed. OBJECTIVE: This study aims to provide information on the current state of the art of technology and data-driven innovations for the management of cancer care through the work of four EU H2020-funded projects. METHODS: Two international workshops on ICT in the management of cancer care were held, and several topics were identified through discussion among the participants. A focus group was formulated after the second workshop, in which the status of technological and data-driven cancer management as well as the challenges, opportunities, and recommendations in this area were collected and analyzed. RESULTS: Technical and data-driven innovations provide promising tools for the management of cancer care. However, several challenges must be successfully addressed, such as patient engagement, interoperability of ICT-based systems, knowledge management, and trust. This paper analyzes these challenges, which can be opportunities for further research and practical implementation and can provide practical recommendations for future work. CONCLUSIONS: Technology and data-driven innovations are becoming an integral part of cancer care management. In this process, specific challenges need to be addressed, such as increasing trust and engaging the whole stakeholder ecosystem, to fully benefit from these innovations.