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

被引:4
作者
Chu, Brian [1 ]
Maranga, Abena [1 ]
Mosojane, Karen I. [3 ]
Allen-Taylor, Lynne [1 ]
Ralethaka, Malebogo [3 ]
Ngubula, Jinyo C. [3 ]
Shifa, Jemal Z. [4 ]
Jereni, Bwanali H. [3 ,4 ]
Nkomazana, Oathokwa [4 ]
Williams, Victoria L. [2 ,3 ,4 ,5 ,6 ]
机构
[1] Univ Penn, Dept Dermatol, Philadelphia, PA USA
[2] Univ Penn, Perelman Sch Med, Philadelphia, PA USA
[3] Minist Hlth & Wellness Botswana, Gaborone, Botswana
[4] Univ Botswana, Gaborone, Botswana
[5] Merck & Co Inc, Upper Gwynedd, PA USA
[6] 3737 Market St, Philadelphia, PA 19104 USA
来源
JAAD INTERNATIONAL | 2021年 / 2卷
关键词
albinism; dermatology; discrimination; oculocutaneous albinism; persons or people living with albinism (PWA); skin cancer; skin cancer prevention; stigma; SURROUNDING PEOPLE; AFRICA; HEALTH;
D O I
10.1016/j.jdin.2020.12.002
中图分类号
R75 [皮肤病学与性病学];
学科分类号
100206 ;
摘要
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.
引用
收藏
页码:153 / 163
页数:11
相关论文
共 50 条
  • [41] Missing Heritability in Albinism: Deep Characterization of a Hungarian Albinism Cohort Raises the Possibility of the Digenic Genetic Background of the Disease
    Nagy, Nikoletta
    Pal, Margit
    Kun, Jozsef
    Galik, Bence
    Urban, Peter
    Medvecz, Marta
    Fabos, Beata
    Neller, Alexandra
    Abdolreza, Aliasgari
    Danis, Judit
    Szabo, Viktoria
    Yang, Zhuo
    Fenske, Stefanie
    Biel, Martin
    Gyenesei, Attila
    Adam, Eva
    Szell, Marta
    INTERNATIONAL JOURNAL OF MOLECULAR SCIENCES, 2024, 25 (02)
  • [42] Prevalence and sociodemographic determinants of alcohol consumption among adults living with HIV in Eswatini
    Chemhaka, Garikayi B.
    Simelane, Maswati S.
    Moyo, Stanzia
    Shongwe, Mduduzi C.
    AJAR-AFRICAN JOURNAL OF AIDS RESEARCH, 2021, 20 (02): : 132 - 140
  • [43] Living with incontinence: The experience of people with dementia
    Cole, Laura
    Drennan, Vari M.
    DEMENTIA-INTERNATIONAL JOURNAL OF SOCIAL RESEARCH AND PRACTICE, 2019, 18 (05): : 1826 - 1839
  • [44] Identifying psychosocial challenges and introducing coping strategies for people with albinism
    Varkaneh, Mahya Zamani
    Khodabakhshi-Koolaee, Anahita
    Sheikhi, Mohammad Reza
    BRITISH JOURNAL OF VISUAL IMPAIRMENT, 2023, 41 (04) : 791 - 806
  • [45] Psychosocial Experiences and Support Resources of People With Albinism: A Thematic Synthesis
    Alizadeh, Taher
    Bahmani, Bahman
    Khanjani, Mohammadsaeed
    Azkhosh, Manouchehr
    Shakiba, Shima
    Vahedi, Mohsen
    ARCHIVES OF REHABILITATION, 2024, 25 (02): : 180 - 207
  • [46] Resisting and challenging stigma in Uganda: the role of support groups of people living with HIV
    Mburu, Gitau
    Ram, Mala
    Skovdal, Morten
    Bitira, David
    Hodgson, Ian
    Mwai, Grace W.
    Stegling, Christine
    Seeley, Janet
    JOURNAL OF THE INTERNATIONAL AIDS SOCIETY, 2013, 16
  • [47] Test of the stress process model of family caregivers of people living with schizophrenia in China
    Yu, Yu
    Liu, Zi-Wei
    Li, Tong-Xin
    Li, Yi-Lu
    Xiao, Shui-Yuan
    Tebes, Jacob Kraemer
    SOCIAL SCIENCE & MEDICINE, 2020, 259
  • [48] Hepatitis B Virus Prevalence among HIV-Uninfected People Living in Rural and Peri-Urban Areas in Botswana
    Anderson, Motswedi
    Mangogola, Thabo
    Phinius, Bonolo B.
    Mpebe, Gorata
    Aimakhu, Christopher O.
    Choga, Wonderful T.
    Phakedi, Basetsana
    Bhebhe, Lynnette N.
    Ditshwanelo, Doreen
    Baruti, Kabo
    Mpofu-Dobo, Linda
    Othusitse, Lebogang
    Ratsoma, Tsholofelo
    Gaolathe, Tendani
    Makhema, Joseph
    Shapiro, Roger
    Lockman, Shahin
    Moyo, Sikhulile
    Gaseitsiwe, Simani
    MICROORGANISMS, 2024, 12 (06)
  • [49] Cytomegalovirus Immunoglobulin G Levels and Subclinical Arterial Disease among People Living with HIV in Botswana: A Cross-Sectional Study
    Moshomo, Thato
    Molefe-Baikai, Onkabetse Julia
    Bennett, Kara
    Gaolathe, Tendani
    Moyo, Sikhulile
    Gaseitsewe, Simani
    Mohammed, Terence
    Lockman, Shahin
    Mosepele, Mosepele
    BIOMEDICINES, 2024, 12 (05)
  • [50] Phenotypic variations in ocular features among siblings with oculocutaneous albinism
    Bhate, Manjushree
    Lalwani, Sakshi
    Chakrabarti, Subhabrata
    INDIAN JOURNAL OF OPHTHALMOLOGY, 2022, 70 (07) : 2511 - 2515