Racial inequalities in access to care for young people living with pain due to sickle cell disease

2021 ◽  
Vol 5 (1) ◽  
pp. 7-9
Author(s):  
Baba Psalm Duniya Inusa ◽  
Eufemia Jacob ◽  
Livingstone Dogara ◽  
Kofi A Anie
Keyword(s):  
Sickle Cell Disease ◽  
Young People ◽  
Access To Care ◽  
Sickle Cell ◽  
Cell Disease ◽  
Racial Inequalities

scholarly journals Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects

2020 ◽  
Vol 4 (16) ◽  
pp. 3804-3813
Author(s):  
Julie Kanter ◽  
Wally R. Smith ◽  
Payal C. Desai ◽  
Marsha Treadwell ◽  
Biree Andemariam ◽  
...  
Keyword(s):  
United States ◽  
Sickle Cell Disease ◽  
Access To Care ◽  
Sickle Cell ◽  
The United States ◽  
Models Of Care ◽  
System Level ◽  
Cell Disease ◽  
Blood Disorder ◽  
Essential Components

Abstract Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. It is a medically and socially complex, multisystem illness that affects individuals throughout the lifespan. Given improvements in care, most children with SCD survive into adulthood. However, access to adult sickle cell care is poor in many parts of the United States, resulting in increased acute care utilization, disjointed care delivery, and early mortality for patients. A dearth of nonmalignant hematology providers, the lack of a national SCD registry, and the absence of a centralized infrastructure to facilitate comparative quality assessment compounds these issues. As part of a workshop designed to train health care professionals in the skills necessary to establish clinical centers focused on the management of adults living with SCD, we defined an SCD center, elucidated required elements of a comprehensive adult SCD center, and discussed different models of care. There are also important economic impacts of these centers at an institutional and health system level. As more clinicians are trained in providing adult-focused SCD care, center designation will enhance the ability to undertake quality improvement and compare outcomes between SCD centers. Activities will include an assessment of the clinical effectiveness of expanded access to care, the implementation of SCD guidelines, and the efficacy of newly approved targeted medications. Details of this effort are provided.

scholarly journals Barriers experienced in self-care practice by young people with sickle cell disease

2018 ◽  
Vol 40 (3) ◽  
pp. 207-212 ◽  
Author(s):  
Sumaya Giarola Cecilio ◽  
Sônia Aparecida dos Santos Pereira ◽  
Valquíria dos Santos Pinto ◽  
Heloísa de Carvalho Torres
Keyword(s):  
Sickle Cell Disease ◽  
Young People ◽  
Sickle Cell ◽  
Self Care ◽  
Care Practice ◽  
Cell Disease

Moving young people with sickle cell disease from paediatric to adult services

2010 ◽  
Vol 71 (6) ◽  
pp. 310-314 ◽  
Author(s):  
Jo Howard ◽  
Tanya Woodhead ◽  
Luhanga Musumadi ◽  
Alice Martell ◽  
Baba PD Inusa
Keyword(s):  
Sickle Cell Disease ◽  
Young People ◽  
Sickle Cell ◽  
Cell Disease ◽  
Adult Services

scholarly journals An education session on sickle cell disease with teachers in Lagos, Nigeria: evaluation of a randomized controlled trial

2018 ◽  
Vol 5 (3) ◽  
pp. 115-124
Author(s):  
Bolanle Ola ◽  
Ayoola Olajide ◽  
Segun Olajide ◽  
Iain R. Williamson ◽  
Simon M. Dyson
Keyword(s):  
Randomized Controlled Trial ◽  
Sickle Cell Disease ◽  
Young People ◽  
Sickle Cell ◽  
Controlled Trial ◽  
Intervention Group ◽  
Sub Saharan Africa ◽  
Cell Disease ◽  
Education Session ◽  
Randomized Controlled

Sickle cell disease is a major public health issue in sub-Saharan Africa, with Nigeria having the largest absolute numbers of young people living with sickle cell disease. Research in the Global North suggests that young people with sickle cell disease are not well supported at school, whilst research in the Global South focuses on attitudes to the identification of genetic carriers to prevent births of children with sickle cell disease, rather than support of those with the sickle cell disease condition itself. Between 2015 and 2017 a randomized controlled trial based on one hour education session for school teachers, based on information contained in a guide to school policy on sickle cell disease, was conducted with 402 young people with sickle cell disease across 314 schools in Lagos State, Nigeria. Young people with sickle cell disease in both intervention group and control groups showed significant decreases in the number of days of school absence and in self-reported indicators of lack of support, and significant increases in self-reported indicators of school support. The results suggest a breakdown of the randomization, probably because the young people with sickle cell disease all reacted positively to researchers taking an interest in their welfare in a context where they would usually be heavily stigmatized and would be inclined to hide their sickle cell disease status from others at school. In conclusion, conditions conducive to conducting successful research on sickle cell disease in this context - increased self-esteem in young people with sickle cell disease, reduction in within-school stigmatizing attitudes, and commitment by policy makers to improve the situation of young people in schools – are the very factors that would improve the experiences of young people living with sickle cell disease at school in Lagos, Nigeria. The fact that positive changes did occur warrants further research on this topic.

scholarly journals “Body as a Machine”: How Adolescents With Sickle Cell Disease Construct Their Fatigue Experiences

2020 ◽  
Vol 30 (9) ◽  
pp. 1431-1444
Author(s):  
Brenda Agyeiwaa Poku ◽  
Ann-Louise Caress ◽  
Susan Kirk
Keyword(s):  
Sickle Cell Disease ◽  
Young People ◽  
Sickle Cell ◽  
Growing Up ◽  
Cell Disease ◽  
Social Significance ◽  
Major Threat ◽  
Illness Experiences ◽  
The Social ◽  
Undesirable Feature

Research exploring illness experiences of young people with sickle cell disease (SCD) has, to date, ignored fatigue, despite the distinctive anemic nature of SCD. To examine adolescents with SCD fatigue experiences, we conducted narrative and picture-elicitation interviews with 24 adolescents in Ghana. A grounded theory, “body as a machine,” was constructed from the narratives. Fatigue represented the most restrictive and disruptive aspect of growing up with SCD. Its meaning and significance laid in what it symbolized. Fatigue represented a socially undesirable feature that was stigmatizing, due to the expectations of high physicality in adolescence. Fatigue was therefore a major threat to “normalcy.” The social significance of the physical body and its capacities shaped the adolescents’ fatigue experiences. Managing fatigue to construct/maintain socially acceptable identities dominated the adolescents’ lives. Consequently, there is a need for a recognition of the significance of fatigue to adequately support young people growing up with SCD.

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