Factors Affecting Quality of Life for People Living with Albinism in Botswana

Anshelevich, Ellen E.; Mosojane, Karen Itumeleng; Kenosi, Lorato; Nkomazana, Oathokwa; Williams, Victoria

doi:10.1016/j.det.2020.08.012

Cited by 14 publications

(37 citation statements)

References 28 publications

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“… 8 , 18 These findings were further supported by an additional arm of this study, which analyzed 27 interviews from members of this PWA cohort and demonstrated that limited skin/eye care access, visual impairment, and an unsupportive educational environment were major contributors to poor quality of life. 12 There was a clear disconnect between participants self-perceived versus actual understanding of the condition of albinism in both cohorts, demonstrating the need for increased efforts to improve overall albinism education and awareness in Botswana.…”

Section: Discussionmentioning

confidence: 94%

“… 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 This typically led to the societal and self-imposed marginalization of this population, subsequently having a negative impact on education, professional advancement, and psychosocial health. 4 Through interviews detailed in a separate manuscript, 12 our cohort of PWA also emphasized that stigma and discrimination had a far-reaching impact across physical, psychosocial, and environmental health factors throughout their lives. In addition to psychosocial trauma from stigma/discrimination, PWA in some parts of Africa also face acts of violence and ritual murders committed because of superstitious and traditional beliefs surrounding the body parts of PWA.…”

Section: Discussionmentioning

confidence: 95%

“…This was one arm of a pilot study that also included qualitative interviews of the same cohort of PWA (results were reported separately). 12 …”

Section: Methodsmentioning

confidence: 99%

“…This was one arm of a pilot study that also included qualitative interviews of the same cohort of PWA (results were reported separately). 12 Setting Botswana is a middleincome country with a near 90% literacy rate, a [70% urban population, and a high unemployment rate of 20%. 13 Although Botswana has a universal health care system, nearly half of the doctors in Botswana are based in two urban areas, leading to access challenges, particularly for specialty care.…”

Section: Methodsmentioning

confidence: 99%

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Sociodemographic features of a cohort of people living with albinism in Botswana

et al. 2021

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Background Oculocutaneous albinism is disproportionately prevalent in Africa; however, the medical and psychosocial characteristics of people living with albinism (PWA) in Botswana have not been studied. Objective To characterize the demographics, health-related factors, sun-protective behaviors, and psychosocial challenges of PWA in Botswana. Methods Overall, 50 PWA and 99 patients without albinism (non-PWA) were recruited and surveyed. Results Higher proportions of PWA lived in rural villages compared with non-PWA (odds ratio [OR], 2.59; 95% confidence interval [CI], 1.26-5.34). PWA reported limited access to health care more frequently compared with non-PWA (OR, 2.72; 95% CI, 1.11-6.62). High proportions of PWA adopted sun-protective measures, including sunscreen, clothing, and sunlight avoidance. Despite high rates of feeling accepted by family and peers, PWA had increased odds of feeling unaccepted by their community (OR, 15.16; 95% CI, 5.25-31.81), stigmatized by society (OR, 9.37; 95% CI, 3.43-35.62), and affected by stigma in social interactions (OR, 2.21; 95% CI, 1.08-4.54) compared with non-PWA. Three-quarters of PWA had witnessed mistreatment of PWA. Limitations Study limitations include the small sample size, convenience sampling, and a non-validated survey instrument. Conclusion PWA faced increased medical and psychosocial challenges compared with non-PWA in Botswana. Our findings can begin to inform public health strategies aimed at promoting improved health care, education, and social inclusion for this population in Botswana and other regions in Africa.

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Section: Discussionmentioning

confidence: 94%

Section: Discussionmentioning

confidence: 95%

“…This was one arm of a pilot study that also included qualitative interviews of the same cohort of PWA (results were reported separately). 12 …”

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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Sociodemographic features of a cohort of people living with albinism in Botswana

et al. 2021

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“…They may be trialed on a plethora of indiscriminate treatments to address their skin concerns. This can result in wasted time, money, exposure to unnecessary side effects and in some cases signi cant morbidity, particularly in the case of skin cancers that can go undiagnosed and grow to an untreatable size before the patient reaches dermatology [10].…”

Section: Introductionmentioning

confidence: 99%

Evaluating Feasibility and Acceptance of a Mobile Clinical Decision Support System in Botswana

Ndlovu

Stein²,

Gaopelo

et al. 2022

Preprint

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Background The health workforce in Botswana consists mainly of medical officers and primary care nurses working in remote areas with limited training and insufficient reference materials to support diagnosis and management of diseases in dermatology and other subspecialties. This suggests a need for clinical decision support tools for these healthcare providers. VisualDx, a well-established mobile clinical decision support system, offers a promising solution with documented benefits. However, implementation of eHealth systems is commonly associated with challenges. To inform sustainable implementation of VisualDx in Botswana, it is important to evaluate intended users’ perceptions of the technology. This study aims to determine healthcare workers acceptance of VisualDx to gauge feasibility of future adoption in Botswana and other similar healthcare systems. Methods The study's design was informed by constructs of the technology acceptance model. A convergent mixed methods feasibility study involving surveys and semi-structured interviews was conducted. The Research Electronic Data Capture (REDCap) platform supported online data capture from March 2021 through August 2021. Twenty eight healthcare workers across Botswana participated in the study and their usage data was tracked over time. Descriptive statistics were generated and analyzed using Excel and REDCap. Thematic analysis of interview transcripts was performed using Delve. Results All initial survey participants (n = 28) expressed interest in using mHealth technology to support their daily work. Prior to VisualDx access, participants referenced textbooks, journal articles, and Google search engines among others. Overall, participants' survey responses showed their confidence in the VisualDx platform (94.7%); however, some barriers were noted. Frequently used features included generating a differential diagnosis through manual entry of patient symptoms (48.5%) or using the artificial intelligence feature (22.0%). Seventeen (60.7%) participated in virtual interview sessions at different times and ultimately 4 themes (governance, infrastructure, human resource capacity development and usability) were derived. Conclusions Participants' responses indicated acceptance of the VisualDx platform. The ability to access information quickly without internet connection is crucial in resource constrained environments. Select enhancements to VisualDx may further increase the feasibility of a national roll-out in Botswana, improving acceptance and successful adoption of the platform by general practitioners needing decision support for dermatology and other subspecialties.

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Publication Trends of Qualitative Research in Dermatology

2023

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ImportanceQualitative studies serve as a tool for dermatologists and researchers in dermatology to engage with and understand perspectives of populations with different cultures and backgrounds.ObjectiveTo assess (1) current approaches to qualitative dermatologic research and (2) the publication trends of these studies with the aim to inform researchers regarding qualitative research and its significance and applicability in the field of dermatology.Evidence ReviewA scoping review was conducted in which PubMed and CINAHL Plus were searched using dermatology AND qualitative, dermatology, and 7 qualitative methods terms. Studies were selected for inclusion using 3 levels of screening. Level 1 excluded articles published in a language other than English. Level 2 excluded articles of studies involving mixed methods, quantitative methods, systematic review, and meta-analysis. Level 3 excluded articles that were not specific to general dermatology, medical dermatology, pediatric dermatology, dermatologic surgery, dermatopathology, or education and training associated with dermatology. Finally, all duplicates were removed. The searches were conducted from July 23 to 28, 2022. All articles obtained from PubMed and CINAHL Plus searches were recorded in REDCap.FindingsA total of 1398 articles were reviewed, and of these, 249 (17.8%) were qualitative dermatology studies. Common qualitative methods included content analysis (58 [23.3%]) and grounded theory/constant comparison (35 [14.1%]). Individual interviews were the most common data collection method (198 [79.5%]), and patients (174 [69.9%]) were the most common participant type. Patient experience (137 [55.0%]) was the most common investigated topic. Overall, 131 qualitative studies (52.6%) in dermatology were published in dermatology journals, and 120 qualitative studies (48.2%) in dermatology were published between 2020 and 2022.Conclusions and RelevanceQualitative research in dermatology is becoming more prevalent. There is value in qualitative research, and we encourage researchers in dermatology to incorporate qualitative methods in their studies.

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Factors Affecting Quality of Life for People Living with Albinism in Botswana

Cited by 14 publications

References 28 publications

Sociodemographic features of a cohort of people living with albinism in Botswana

Sociodemographic features of a cohort of people living with albinism in Botswana

Evaluating Feasibility and Acceptance of a Mobile Clinical Decision Support System in Botswana

Publication Trends of Qualitative Research in Dermatology

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