Time to apply a social determinants of health lens to addressing sickle cell disorders in sub-Saharan Africa

Berghs, Maria; Ola, Bola; Chavez, Anna Cronin de; Ebenso, Bassey

doi:10.1136/bmjgh-2020-002601

Cited by 18 publications

(21 citation statements)

References 15 publications

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“…Many patients diagnosed with SCD live in communities with limited resources and experience social, political, and economic marginalization 41–42 . These social determinants have a profound impact on nearly every facet of health 44–46 . As demonstrated in our analyses, community and familial socioeconomic status are highly associated and overlapping constructs.…”

Section: Discussionmentioning

confidence: 70%

Neurocognitive functioning in preschool children with sickle cell disease

Heitzer

Cohen

Okhomina

et al. 2021

Pediatric Blood & Cancer

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Background Children with sickle cell disease (SCD) experience neurodevelopmental delays; however, there is limited research with preschool‐age children. This study examined neurocognitive risk and protective factors in preschoolers with SCD. Procedure Sixty‐two patients with SCD (60% HbSS/HbSβ0‐thalassemia; 40% HbSC/HbSβ+‐thalassemia) between the ages of 3 and 6 years (mean = 4.77 years) received a neuropsychological evaluation as routine systematic surveillance. Patients were not selected for disease severity, prior central nervous system findings, or existing cognitive concerns. Thirty‐four patients (82% HbSS/HbSβ0‐thalassemia) were prescribed hydroxyurea (HU) at the time of their neuropsychological evaluation. On average, these patients had been prescribed HU at 2.15 (standard deviation = 1.45) years of age. The average dose was 28.8 mg/kg/day. Besides genotype, there were no group differences in medical or demographic factors based on HU treatment status. Results Patients with HbSS/HbSβ0‐thalassemia scored below normative expectations on measures of intelligence, verbal comprehension, and school readiness (false discovery rate‐adjusted p‐value [pFDR] < .05). Age, sickle genotype, and HU treatment exposure were not associated with measured neurocognitive outcomes (pFDR > .05). Greater social vulnerability at the community level was associated with poorer performance on measures of intellectual functioning, verbal comprehension, visuomotor control, and school readiness, as well as parent report of executive dysfunction (pFDR < .05). Greater household socioeconomic status was positively associated with academic readiness. Conclusions Preschoolers with severe SCD (HbSS/HbSβ0‐thalassemia) perform below age expectations on measures of intelligence and academic readiness. Sociodemographic factors were stronger drivers of neurocognitive performance than disease severity or disease‐modifying treatment. Neurodevelopmental interventions targeting the home and broader community environment are needed.

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Section: Discussionmentioning

confidence: 70%

Neurocognitive functioning in preschool children with sickle cell disease

Heitzer

Cohen

Okhomina

et al. 2021

Pediatric Blood & Cancer

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“…Adaptation of these SCD management systems can be further investigated using an implementation science framework to examine appropriateness, adaptation, feasibility, and effectiveness of community-based health care organization practices in other regions. Moreover, these findings suggest that interventions to increase SCD management must be holistic in scope, including not only a biomedical focus but also strategies to address socio-cultural and political determinants of health (Berghs, Ola et al, 2020). Further research should include existing patient and provider education and counseling programs within systems that acknowledge the rural, Sierra Leonean context.…”

Section: Discussionmentioning

confidence: 99%

“It Is Not Easy”: Cultural Influences of Sickle Cell Disease Management in Rural, Eastern Sierra Leone

et al. 2021

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Sickle cell disease (SCD) is a chronic genetic disease that causes life-threatening complications and requires robust comprehensive management. Developing comprehensive SCD programs in sub-Saharan African countries requires knowledge of the cultural factors affecting health-seeking behavior. We utilized an ethnographic approach and the frameworks of Dutta and Habermas to explore cultural factors influencing SCD management in rural Sierra Leone. A purposive sample of 27 individuals with SCD and their family and professional caregivers were observed and interviewed from March 2019 to April 2019. We identified four domains (Cultural Beliefs, Cultural Values, Cultural Practices, and Dealing with SCD) of cultural influences on SCD management, and 12 sub-themes (related to collectivism; spiritual, traditional, and Western beliefs and practices; and lived experiences) that reflect the personal, social, structural, and contextual complexities of SCD management. Further research regarding roles of traditional and spiritual leaders, combinations of Western and traditional practices, and culturally centered interventions is warranted.

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“…This has often raised difficult ethical, social and emotional issues about how to make and share these decisions within families (Sullivan et al, 2018 ) and what the rights are of older patients facing more serious manifestations of the conditions to such risky or newer experimental cures. A politics of social justice, “race” and health equity in terms of access to cures in resource poor settings in the UK, US and countries in the Global South where most people are affected; like in Nigeria, India and Brazil, that do not have access to the basics of good care, has also emerged (Bliss, 2012 ; Benjamin, 2013 ; Berghs et al, 2020 ).…”

Section: Case-study 3: Rare Diseases and Weighing The Costs Of Therap...mentioning

confidence: 99%

Let's Get Back to Normal? COVID-19 and the Logic of Cure

Berghs

2022

Front. Sociol.

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The COVID-19 pandemic has inversed certainties of absolutes of cure in everyday life but paradoxically this has occurred during a time when novel scientific advancements seem to herald a new frontier of cures for rare diseases, chronic conditions, disabilities and viruses that were previously incurable. In this paper, I illustrate the development of a logic of cure by first of all noting a lacuna in the medical sociological and anthropological literature, where although a lot of empirical research and theoretical work to understand cure has been undertaken, there has been no sociology or anthropology of cure. Using three case studies, I examine what they reveal about the logic of cure. Firstly, I argue that there is a development of a bioethics of cure in reactions of disability community and disabled people to care as cure during the COVID-19 pandemic. The second case-study focuses on understanding limitations of vaccines and how people react against such indeterminancies of loss of absolutes of cure. Lastly, the final case study describes how while there are cures, for example, for rare genetic conditions, they are often initially curated with long-term cost-benefit analysis for the Global North. In conclusion, it is found that many of the developments within sociology and anthropology are missing from a logic of cure and that a new theory of cure has to develop.

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Time to apply a social determinants of health lens to addressing sickle cell disorders in sub-Saharan Africa

Cited by 18 publications

References 15 publications

Neurocognitive functioning in preschool children with sickle cell disease

Neurocognitive functioning in preschool children with sickle cell disease

“It Is Not Easy”: Cultural Influences of Sickle Cell Disease Management in Rural, Eastern Sierra Leone

Let's Get Back to Normal? COVID-19 and the Logic of Cure

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