Empowering Caregiver Well-Being With the Adhera Caring Digital Program for Family Caregivers of Children Living With Type 1 Diabetes: Mixed Methods Feasibility Study

Abstract

Background: Caregivers of children living with type 1 diabetes (T1D) face multiple challenges that significantly impact their mental health and quality of life. The well-being of caregivers directly affects the management of the child's condition. The Adhera Caring Digital Program (ACDP) is a comprehensive, digitally delivered program, designed to support family caregivers in enhancing self-management and well-being. This study aims to assess how the ACDP influences caregivers' mood, emotional well-being, and health-related quality of life within the context of T1D.

Objective: This study aimed to evaluate the impact of ACDP on caregivers' psychological well-being and caregiving outcomes.

Methods: This was a two-step, prospective, mixed methods study targeting caregivers of children living with T1D who were under the care of a pediatric endocrinologist at Miguel Servet Children's University Hospital in Zaragoza, Spain. In substudy 1 (SS1), qualitative and quantitative data were collected to optimize the ACDP. In substudy 2 (SS2), caregivers used the optimized ACDP for three months. Psychometric assessments were conducted at baseline and follow-up to evaluate positive mood states, general well-being, self-efficacy, and lifestyle behaviors. This paper focuses on SS2.

Results: Ninety caregivers participated in SS2. Positive affect significantly increased (P<.001), and negative affect decreased (P<.001) on the Positive and Negative Affect Schedule (PANAS). Depression, anxiety, and stress scores were reduced (P<.001) on the Depression, Anxiety and Stress Scale-21 Items (DASS-21). General well-being, measured by the Mental Health Continuum-Short Form (MHC-SF) and self-efficacy, assessed using General Self-Efficacy Scale (GSE), improved significantly (P<.001). Health-related quality of life (HrQoL) scores and Mediterranean Diet Quality Index scores increased modestly (P=.03, and P=.04, respectively).

Conclusions: The ACDP intervention improved caregivers' psychological well-being and self-efficacy. These findings highlight the potential of digital solutions to support caregiver mental health and positively influence diabetes management. Future research should explore long-term outcomes and scalability.

Keywords: CGM; T1D; caregiver; caregiver wellbeing; caregiving; carer; children; chronic; coaching; continuous glucose monitoring; diabetes; diabetic; digital health; digital program; endocrinology; family care; glucose; guardian; informal care; parental; parents; pediatrics; type 1 diabetes.

Figure 1.. Substudy 2 diagram. DASS-21:depression, anxiety and stress scale-21 items; GSE: general self-efficacy scale; MDI/CSII: multiple daily injections and continuous subcutaneous insulin infusion; MHC-SF: mental health continuum-short form; PANAS: positive and negative affect schedule; SUS: system usability scale.