# “Nothing for Us Without Us”: A Mixed Methods Study Examining the Acceptability, Feasibility, and Impact of Involving Guardians of Children With Acute Lymphoblastic Leukemia in Tanzania as Public Contributors

## TL;DR

This study explores how involving guardians of children with leukemia in Tanzania improves the design and impact of an SMS intervention to reduce treatment abandonment.

## Contribution

The study introduces a mixed-methods approach to evaluate public involvement in research design in low-resource settings.

## Key findings

- Guardians provided 63 suggestions, 79% of which were implemented.
- Public involvement was found to be acceptable and feasible in the research context.
- Involvement had positive impacts on both the research and the guardians themselves.

## Abstract

In low‐ and middle‐income countries (LMICs) such as Tanzania, non‐adherence and treatment abandonment are major factors contributing to low childhood cancer survival rates. Providing guardians with reminders and information via an SMS intervention may increase adherence and reduce treatment abandonment. The purpose of the GuardiansCan project is to reduce guardians' abandonment of children's maintenance therapy for acute lymphoblastic lymphoma (ALL) in Tanzania, thereby increasing ALL survival rates in the country by developing and evaluating an SMS intervention. We report initial results from phase one of a mixed‐method examination of public contribution activities in the GuardiansCan project. We aimed to: recruit guardians of children treated for ALL to a Guardian Advisory Board (GAB) to contribute to the design and conduct of Study II within the GuardiansCan project (Study II) and the wider GuardiansCan project; and examine the acceptability, feasibility, and impact of GAB members' contribution from the perspective of GAB members and public contribution coordinators (coordinators).

We adopted a convergent parallel mixed‐methods design, using impact logs and semi‐structured interviews, with data integrated at the point of analysis. During four workshops, GAB members provided suggestions and recommendations, which were recorded in impact logs. GAB members and coordinators were interviewed about the acceptability, feasibility, and impact of GAB members' contributions.

Nine guardians were recruited. GAB members made 63 suggestions and recommendations, of which 50 (79%) were implemented. Semi‐structured interviews resulted in seven categories: Meaning and value, Motivation and willingness to volunteer, Suggestions and areas for improvement, Barriers and challenges, Facilitators, Personal impact, and Research impact.

Findings suggest GAB members' contribution was acceptable and feasible, and had an impact on both the research and GAB members themselves. Findings can inform how to meaningfully involve public contributors in LMICs.