Study published: Involving guardians of children with leukemia in Tanzania as public contributors
Nine guardians of children treated for ALL were recruited as public contributors. Photo: Shadrack Mwamafupa
In a recently published study, researchers within the CIRCLE research group explores how guardians of children treated for acute lymphoblastic leukemia (ALL) in Tanzania can be involved as public contributors in health research. The study examines the acceptability, feasibility, and impact of involving guardians in a Guardian Advisory Board within the GuardiansCan project.
Guardians’ suggestions helped shape the research
In low- and middle-income countries, including Tanzania, treatment abandonment and non-adherence contribute to low survival rates for childhood cancer. The GuardiansCan project aims to address this challenge by developing an SMS-based intervention that provides guardians with reminders and information to support children’s treatment.
The study's first author, PhD student Faraja Chiwanga. Photo: Shadrack Mwamafupa
In this study, nine guardians of children treated for ALL were recruited to a Guardian Advisory Board. During four workshops, the guardians contributed with suggestions and recommendations to the research project. In total, they made 63 suggestions, of which 50 (79%) were implemented by the research team.
Interviews with guardians and project coordinators showed that participation in the advisory board was both acceptable and feasible. The findings also indicate that the guardians’ contributions had an impact on the research as well as on the participants themselves.
‘Public contributors can strengthen research’
– Our findings show that involving guardians as public contributors was both feasible and meaningful. Their perspectives helped shape the research and ensured that it was grounded in the experiences of those directly affected, says first author Faraja Chiwanga.
The results provide insights into how public contributors can be meaningfully involved in research in low- and middle-income countries.
Miro Anter
Link to the article
Read the full article “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’. It is authored by Faraja Chiwanga, Guardian Advisory Board, Ruchius Philbert, David A. Richards, Abla Sami, Holly V. R. Sugg, Ida Österman Menander, Joanne Woodford, and Louise von Essen.