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An mHealth Intervention to Improve Guardians' Adherence to Children's Follow-Up Care for Acute Lymphoblastic Leukemia
Faraja S Chiwanga1,2, Joanne Woodford1, Golden M Masika1,3
1Department of Women's and Children's health, Healthcare Sciences and e-Health, Uppsala University, Uppsala, Sweden.
Insights
This study aims to develop a mobile health (mHealth) intervention to improve adherence to childhood cancer treatment and reduce distress for guardians in Tanzania. The goal is to enhance follow-up care for children with acute lymphoblastic leukemia (ALL).
Area of Science:
- Global Health
- Digital Health Interventions
- Childhood Cancer Research
Background:
- Childhood cancer survival rates are low in low- and middle-income countries, with Tanzania reporting rates as low as 20% due to treatment abandonment.
- Factors contributing to treatment abandonment include poor healthcare provider-guardian communication, limited cancer knowledge, and psychological distress among guardians.
Purpose of the Study:
- To develop a culturally appropriate mobile health (mHealth) intervention to improve adherence to follow-up care for children with acute lymphoblastic leukemia (ALL) in Tanzania.
- The intervention aims to increase adherence to medication and follow-up visits, and decrease psychological distress in guardians.
Main Methods:
- The GuardiansCan project follows the Medical Research Council framework for complex interventions, using an iterative, phased approach.
- Public engagement is central, with a Guardians Advisory Board providing input throughout the development process.
- Methods include participatory action research, focus groups, photovoice, and mixed-methods feasibility studies to co-design and evaluate the mHealth intervention.
Main Results:
- Data collection for the GuardiansCan project is projected to span 3 years, commencing with the recruitment of the Guardians Advisory Board in autumn 2023.
- Study I will examine the acceptability and impact of the Guardians Advisory Board activities.
Conclusions:
- The project aims to develop an acceptable, feasible, and relevant mHealth intervention for improving adherence to childhood ALL follow-up care in Tanzania.
- This intervention has the potential to improve children's health outcomes, increase survival rates, and reduce guardian distress.
Background:
Cancer is a leading cause of death during childhood and in low- and middle-income countries survival rates can be as low as 20%. A leading reason for low childhood cancer survival rates in low- and middle-income countries such as Tanzania is treatment abandonment. Contributing factors include poor communication between health care providers and children's guardians, insufficient cancer knowledge, and psychological distress.
Objective:
Our aim is to respond to Tanzanian guardians' poor adherence to children's follow-up care after treatment for acute lymphoblastic leukemia with the help of mobile health (mHealth) technology. Our goal is to increase guardians' adherence to children's medications and follow-up visits and to decrease their psychological distress.
Methods:
Following the Medical Research Council framework for developing and evaluating complex interventions, we will undertake the GuardiansCan project in an iterative phased approach to develop an mHealth intervention for subsequent testing. Public contribution activities will be implemented throughout via the establishment of a Guardians Advisory Board consisting of guardians of children with acute lymphoblastic leukemia. We will examine the acceptability, feasibility, and perceived impact of Guardians Advisory Board activities via an impact log and semistructured interviews (study I). In phase 1 (intervention development) we will explore guardians' needs and preferences for the provision of follow-up care reminders, information, and emotional support using focus group discussions and photovoice (study II). We will then co-design the mHealth intervention with guardians, health care professionals, and technology experts using participatory action research (study III). In phase 2 (feasibility), we will examine clinical, methodological, and procedural uncertainties associated with the intervention and study procedures to prepare for the design and conduct of a future definitive randomized controlled trial using a single-arm pre-post mixed methods feasibility study (study IV).
Results:
Data collection for the GuardiansCan project is anticipated to take 3 years. We plan to commence study I by recruiting Guardians Advisory Board members in the autumn of 2023.
Conclusions:
By systematically following the intervention development and feasibility phases of the Medical Research Council Framework, and working alongside an advisory board of guardians, we intend to develop an acceptable, culturally appropriate, feasible, and relevant mHealth intervention with the potential to increase guardians' adherence to children's follow-up care after treatment of acute lymphoblastic leukemia, leading to a positive impact on children's health and chances to survive, and reducing distress for guardians.
International Registered Report Identifier (Irrid):
PRR1-10.2196/48799.
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