Exploring The Perceptions and Effectiveness of Engage Now Africa’s Interventions for Persons Living with Albinism in Ghana

Abstract

Background: Persons living with albinism (PLWA) in Ghana face complex challenges that go beyond genetic and medical vulnerabilities. Despite efforts by non-governmental organizations such as Engage Now Africa (ENA) to improve their quality of life through targeted interventions, little is known about how these initiatives are perceived by the beneficiaries themselves. Understanding these perceptions is crucial to ensuring that such interventions are relevant, empowering, and culturally appropriate. This study aims to explore the experiences and perspectives of PLWA regarding the relevance and effectiveness of ENA’s interventions. Methodology: Using an exploratory qualitative design, the study relies on secondary data drawn from a project evaluation conducted by ENA. The dataset includes 40in-depth interview transcripts involving PLWA and a few caregivers of children with albinism across the Northern, Upper East, and Volta Regions of Ghana. For this study, the transcripts were reanalyzed using thematic analysis guided by Braun and Clarke’s six-phase framework, using ATLAS.ti software. Deductive codes based on the Theory of Planned Behavior and inductive themes emerging from the narratives was used to identify patterns related to intervention relevance, access, empowerment, and social impact. Results: The study found that interventions provided by Engage Now Africa (ENA) had a significant impact on the wellbeing of persons living with albinism (PLWA). Health-related support such as provision of sunscreen, skin care products, and access to healthcare services reduced vulnerability to skin cancer and improved health outcomes. Educational interventions, including scholarships, advocacy in schools, and awareness creation, enhanced enrolment and retention of PLWA in formal education. Livelihood empowerment programmes, particularly skills training and small business support, promoted economic independence and reduced dependency. Advocacy and community sensitization initiatives were instrumental in reducing stigma, improving social acceptance, and strengthening inclusion at the community level. Despite these positive outcomes, challenges such as limited coverage, sustainability concerns, and persistent social misconceptions were identified. Conclusions: The study concludes that ENA’s multifaceted interventions are relevant and effective in addressing the health, educational, and socio-economic needs of persons with albinism in Ghana. These interventions have contributed to improving quality of life and promoting social inclusion. However, sustaining these gains requires stronger governmental commitment, integration of albinism-related issues into national health and social protection policies, and continuous community engagement. Expanding partnerships between NGOs, state institutions, and international bodies is also necessary to ensure long-term impact and equity for PLWA.