A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana.

BACKGROUND: Sickle cell disease (SCD) describes a group of multisystem, genetic and stigmatising blood conditions that are prevalent in sub-Saharan Africa. Health-related stigma is a negative experience or adverse social judgement about a group based on an enduring feature conferred by a particular health problem. Literature shows that stigmatisation is experienced by people with SCD with negative implications on their lives. This study investigated self-reported views and lived experiences of young adults in Accra, Ghana, regarding SCD-related stigma and its impact on their lives. METHODS: Data were collected from 19 males and females with SCD using semi-structured individual interviews and focus group discussions. Transcripts were analysed using Braun and Clark's framework for thematic analysis. RESULTS: Five themes were identified: exclusion; status loss; SCD misconceptions; internalised stigma; and stigma and health outcomes. Overall, interpersonal and institutional levels of stigma were evident throughout the data with a lack of public education, limited specialist care and religion acting as determinants of SCD-related stigma. CONCLUSIONS: Stigma has detrimental consequences for young adults with SCD. Multilevel stigmatisation of SCD at interpersonal and institutional levels should be addressed through multipronged approaches including increased public education, investment in specialist healthcare and collaboration with socioreligious institutions. Further research is needed to investigate the experiences of young adults in rural Ghana.

Scoping review of community health participatory research projects in Ghana.

BACKGROUND: Community health participation is an essential tool in health research and management where community members, researchers and other relevant stakeholders contribute to the decision-making processes. Though community participation processes can be complex and challenging, evidence from previous studies have reported significant value of engaging with community in community health projects. OBJECTIVE: To identify the nature and extent of community involvement in community health participatory research (CHPR) projects in Ghana and draw lessons for participatory design of a new project on diabetes intervention in Accra called the Contextual Awareness Response and Evaluation (CARE) diabetes project. METHODS: A scoping review of relevant publications on CHPR projects in Ghana which had a participatory component was undertaken. PubMed, PsycINFO, African Journal Online, Health Source: Nursing/Academic Edition, Humanities International Complete and Google Scholar were searched for articles published between January 1950 and October 2021. Levac et al.'s (2010) methodological framework for scoping reviews was used to select, collate and characterise the data. RESULTS: Fifteen studies were included in this review of CHPR projects from multiple disciplines. Participants included community health workers, patients, caregivers, policymakers, community groups, service users and providers. Based on Pretty's participation typology, several themes were identified in relation to the involvement of participants in the identified studies. The highest levels of participation were found in two studies in the diagnosis, four in the development, five in the implementation and three in the evaluation phases of projects. Community participation across all studies was assessed as low overall. CONCLUSION: This review showed that community participation is essential in the acceptability and feasibility of research projects in Ghana and highlighted community participation's role in the diagnosis, development, implementation and evaluation stages of projects. Lessons from this review will be considered in the development, implementation, and future evaluation of the CARE diabetes project.