Impacts of stigma on adults with thalassemia in the US: Who is impacted and what can we do?
Clinical Genetics and Therapeutics
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Primary Categories:
- Clinical-Adult
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Secondary Categories:
- Clinical-Adult & Pediatric
Introduction:
Thalassemia is an autosomal recessive hemoglobinopathy presenting with chronic anemia alongside other complications in its most severe state. Literature from countries where thalassemia is endemic suggests that individuals with thalassemia experience the added burden of stigma, which leads to significant impacts on quality of life. However, few studies have focused on stigma experienced by adults with thalassemia in the United States. We explored the impacts of stigma on various aspects of life (employment, marriage, feelings of guilt, etc.) for this population and identified demographic predictors.
Methods:
A 40-item questionnaire, composed of a previously validated instrument and open-ended questions, was distributed via the Cooley’s Anemia Foundation registry, social media and word-of-mouth. Complete responses from 82 participants (mean age 41.8 ± 17.4 years; 62% females; 59% with β-thalassemia major) were analyzed and a summed stigma score was created for each participant (M=30.74, SD=22.27), with higher scores indicating greater stigma. Bivariate correlations explored the relationship between demographic categories and stigma.
Results:
Results indicated that greater stigma is experienced by individuals with β-thalassemia intermedia, HbH disease and HbH Constant Spring (p=0.012) as well as immigrants to the US (p=0.092, trending towards significance). Additionally, individuals who are single (p=0.055), married or partnered (p=0.048) experience greater stigma than those who are divorced or separated. No significant associations were found when assessing the relationship between age, education level, biological sex, ancestry, and employment status of participants and stigma scores. Analysis of open-ended responses suggested that stigma is experienced by individuals of all age groups (18 years and older), and disclosure in both personal and professional settings, experiences with discrimination and access to satisfactory medical treatment were problematic for some participants. Participants also discussed the importance of raising children with a healthy mindset to overcome stigma, establishing personal and professional support systems, educating oneself about thalassemia as well as being their own advocates.
Conclusion:
Our findings are important in informing healthcare providers about groups who may be more vulnerable to stigma, guide the provision of resources and may aid in dismantling stigma faced by the thalassemia community.
Thalassemia is an autosomal recessive hemoglobinopathy presenting with chronic anemia alongside other complications in its most severe state. Literature from countries where thalassemia is endemic suggests that individuals with thalassemia experience the added burden of stigma, which leads to significant impacts on quality of life. However, few studies have focused on stigma experienced by adults with thalassemia in the United States. We explored the impacts of stigma on various aspects of life (employment, marriage, feelings of guilt, etc.) for this population and identified demographic predictors.
Methods:
A 40-item questionnaire, composed of a previously validated instrument and open-ended questions, was distributed via the Cooley’s Anemia Foundation registry, social media and word-of-mouth. Complete responses from 82 participants (mean age 41.8 ± 17.4 years; 62% females; 59% with β-thalassemia major) were analyzed and a summed stigma score was created for each participant (M=30.74, SD=22.27), with higher scores indicating greater stigma. Bivariate correlations explored the relationship between demographic categories and stigma.
Results:
Results indicated that greater stigma is experienced by individuals with β-thalassemia intermedia, HbH disease and HbH Constant Spring (p=0.012) as well as immigrants to the US (p=0.092, trending towards significance). Additionally, individuals who are single (p=0.055), married or partnered (p=0.048) experience greater stigma than those who are divorced or separated. No significant associations were found when assessing the relationship between age, education level, biological sex, ancestry, and employment status of participants and stigma scores. Analysis of open-ended responses suggested that stigma is experienced by individuals of all age groups (18 years and older), and disclosure in both personal and professional settings, experiences with discrimination and access to satisfactory medical treatment were problematic for some participants. Participants also discussed the importance of raising children with a healthy mindset to overcome stigma, establishing personal and professional support systems, educating oneself about thalassemia as well as being their own advocates.
Conclusion:
Our findings are important in informing healthcare providers about groups who may be more vulnerable to stigma, guide the provision of resources and may aid in dismantling stigma faced by the thalassemia community.