Voices of Sickle Cell Disease: Strategies for Raising Awareness, Education, and Stigma Reduction in The British Isles, the US, and Sub-Saharan Africa - A Thematic and Comparative Study
Author
Poulsen, Sune
Term
4. term
Publication year
2024
Submitted on
2024-05-31
Pages
92
Abstract
This thesis examines how to raise awareness, strengthen education, and reduce stigma around Sickle Cell Disease (SCD) in the British Isles, the United States, and sub-Saharan Africa. Guided by the Theory of Planned Behavior and the Reasoned Action Approach, it adopts an interpretivist, intercultural perspective and a qualitative mixed-methods design. Data include five interviews with people with SCD-related experiences across the three regions and an analysis of public-facing awareness materials, notably the Sickle Cell Disease Association of America’s “Believe It” campaign (video and radio PSAs). Reflexive thematic analysis and qualitative comparative analysis are used to map recurring themes and regional contrasts, focusing on how beliefs, attitudes, and perceived control shape interactions between patients and healthcare professionals. The study centers patient narratives about gaps in knowledge and training among clinicians, stigmatization and discrimination (including systemic racism), the transition from pediatric to adult care, mental health, and the importance of self-care and self-efficacy. While detailed results are presented in later chapters, the thesis highlights the potential of culturally sensitive communication and behavior change–informed campaigns to build trust, validate lived experience, and improve care pathways. It concludes by outlining future strategies—such as expanding newborn screening to reduce under‑5 mortality, strengthening education and care centers, broadening access to treatment in sub-Saharan Africa, and increasing attention to Sickle Cell Trait—to inform research, policy, and practice.
Dette speciale undersøger, hvordan man kan øge opmærksomheden, styrke uddannelse og reducere stigma omkring seglcellesygdom (SCD) i De Britiske Øer, USA og det subsahariske Afrika. Med afsæt i Theory of Planned Behavior og Reasoned Action Approach anlægges et interpretivistisk, interkulturelt perspektiv og et kvalitativt mixed-methods-design. Datagrundlaget omfatter fem interviews med personer med erfaringer fra de tre regioner samt en analyse af borgerrettede oplysningsmaterialer, især Sickle Cell Disease Association of Americas “Believe It”-kampagne (video- og radiospots). Gennem refleksiv tematisk analyse og kvalitativ komparativ analyse kortlægges gennemgående temaer og forskelle på tværs af kontekster, med fokus på hvordan overbevisninger, holdninger og oplevet handlemulighed påvirker mødet mellem patienter og sundhedsprofessionelle. Specialet fremhæver patientfortællinger om manglende viden og uddannelse hos sundhedspersonale, stigmatisering og diskrimination (herunder systemisk racisme), overgangen fra børne- til voksenbehandling, mental sundhed samt betydningen af egenomsorg og self-efficacy. Selvom detaljerede resultater præsenteres i de senere kapitler, peger specialet på potentialet i kultursensitiv kommunikation og adfærdsforankrede kampagner til at skabe tillid, anerkende levede erfaringer og forbedre behandlingsforløb. Afslutningsvis skitseres fremtidige strategier—fx udbredelse af nyfødtscreening for at sænke dødelighed under fem år, styrkelse af uddannelse og behandlingscentre, bedre adgang til behandling i det subsahariske Afrika samt øget fokus på seglcelletræk—til brug for forskning, politik og praksis.
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