Vol. 1 No. 1 (2004)
A Case Study from Rwanda: Evaluating a Peer-Support Group Intervention for Dietary Adherence in PKU Management within an African Context
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.