Accepted for/Published in: JMIR Research Protocols
Date Submitted: May 8, 2023
Date Accepted: Jul 5, 2023
Date Submitted to PubMed: Jul 5, 2023
Development and feasibility of a mHealth intervention to improve guardians’ adherence to children’s follow up care after treatment for acute lymphoblastic leukemia in Tanzania: An overview of the GuardiansCan project
ABSTRACT
Background:
Cancer is a leading cause of death during childhood and in low- and middle-income countries (LMICs) survival rates can be as low as 20%. A leading reason for low childhood cancer survival rates in LMICs such as Tanzania is treatment abandonment. Contributing factors include poor communication between healthcare providers and children’s guardians (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 mHealth technology. Our goal is to increase guardians’ adherence to children’s medications and follow-up visits; and secondly to decrease their psychological distress.
Methods:
Following the Medical Research Council (MRC) 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 a Guardians Advisory Board consisting of guardians of children with acute lymphoblastic leukemia. We will examine the acceptability, feasibility, and perceived impact of public contribution activities via an impact log and semi-structured interviews (Study I). In Phase One (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, healthcare professionals, and technology experts using participatory action research (Study III). In Phase Two (feasibility) we will examine clinical, methodological, and procedural uncertainties associated with the intervention and study methods in a single-arm pre-post mixed methods pragmatic feasibility study (Study IV).
Results:
Data collection for the GuardiansCan project is anticipated to take three years. We plan to commence Study I by recruiting Guardians Advisory Board members in autumn 2023.
Conclusions:
By systematically following the intervention development and feasibility phases of the MRC Framework, and working alongside an advisory board of guardians, we will 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 reduced suffering for guardians. Clinical Trial: n/a
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