African Genetic Counseling | 03 November 2004

A Case Study from Rwanda: Evaluating a Peer-Support Group Intervention for Dietary Adherence in PKU Management within an African Context

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DOI: https://doi.org/10.5281/zenodo.PENDING_0503

Abstract

Phenylketonuria (PKU) management in Africa faces challenges such as limited resources, cultural dietary practices, and scarce specialist support. Sustaining adherence to a phenylalanine-restricted diet is critical yet difficult. This case study investigates a community-based intervention to address this adherence gap within an African setting. This study aimed to evaluate the implementation and perceived impact of a structured peer-support group intervention for improving dietary adherence among PKU patients and their caregivers in a specific African context. A qualitative case study approach was employed. Data were collected through focus group discussions and semi-structured interviews with PKU caregivers participating in a newly established peer-support group. Thematic analysis was used to analyse the data. Participants reported a positive effect on their ability to manage the PKU diet. A primary theme was the reduction in isolation, with caregivers describing the group as a vital source of practical advice and emotional solidarity. A majority of participants cited learning new, locally feasible food preparation techniques as a direct benefit. The peer-support group model shows promise as a feasible and culturally acceptable adjunct to clinical PKU management in this setting. It addressed key psychosocial barriers to dietary adherence. Integrating peer-support groups into national PKU care programmes is recommended. Further research should explore the model's applicability to other inborn errors of metabolism and its long-term impact on metabolic control. Phenylketonuria, dietary adherence, peer support, Rwanda, case study, genetic metabolic disorder, Africa This case study provides practice-based evidence on implementing a psychosocial intervention for a genetic condition in a resource-limited African context. It contributes to the literature on contextualised genetic counselling support in Africa.