Albinism: A Survey of Attitudes and Behavior

Kolk, Charles J. Vander; Bright, B.

doi:10.1177/0145482x8307700201

Cited by 8 publications

(6 citation statements)

References 2 publications

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“…On the African continent, people with albinism (PWA) are the target of violent discrimination associated with multiple beliefs and superstitions [19][20][21][22]. Nevertheless, several studies have also looked at young PWA's life experiences in terms of education [23][24][25][26][27], social functioning [28,29], and self-concept [30]. Moreover, the last decade has seen a significant amount of research emerge in health psychology regarding adults with albinism.…”

Section: Introductionmentioning

confidence: 99%

Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review

Fournier¹,

Calcagni

Morice‐Picard

et al. 2023

Orphanet J Rare Dis

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Background Since the beginning of human genetic research, there are very few publications sharing insights of the negative impact of rare genetic skin diseases (RGSD) on patients’ experiences. This systematic review assessed the psychosocial implications of these conditions in terms of daily life experiences, emotional state, self-perception, and Quality of Life (QoL). Methodology A systematic review was carried out on albinism, neurofibromatosis type 1 (NF1), birthmarks and inherited ichthyosis. The PubMed, Scopus, PsycArticle, PsychInfo, Psychology and Behavioral Sciences Collection, and SOCindex databases were queried. Inclusion criteria were adult patients with one of these RGSDs. Simple descriptive statistics and qualitative content analysis were conducted to summarize the main results reported by the authors. Results Of the 9987 articles retrieved, 48 articles were included: albinism (16), NF1 (16), inherited ichthyosis (10), birthmarks (6). The majority of the studies on albinism were conducted in Africa. Twenty-seven studies quantitatively assessed diverse psychological parameters: 13 showed a significant impact of the disease on QoL, five on emotional state, two on self-representation and two others on psychiatric comorbidities. Disease severity and visibility were good predictors of QoL (except for albinism). Body image and appearance concerns were also associated with QoL and emotional state. The 19 qualitative studies highlighted recurring themes across each of these diseases: discrimination and stigma during childhood and adolescence, discomfort in social interactions, guilt of transmission, the importance of social support from family and friends, altered daily life functioning, altered romantic and sex life, limited academic and professional aspirations, lack of interest and support from the medical field, and the unpredictability of the evolution of the disease. The only two mixed-method studies in this review were unable to contribute to any inferential analyses but could corroborate some of the qualitative findings. Conclusion These results showed that RGSDs have a significant impact on different aspects of patients’ lives. This review has demonstrated that there is a real need for support systems for patients with these diseases. Such systems should be developed to provide them with necessary information and to guide them through an appropriate care pathway.

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Section: Introductionmentioning

confidence: 99%

Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review

Fournier¹,

Calcagni

Morice‐Picard

et al. 2023

Orphanet J Rare Dis

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“…[ 1 , 2 , 5 – 12 , 29 – 32 , 35 – 47 , 49 , 51 – 57 , 59 – 74 , 76 – 80 , 125 – 128 , 130 – 134 , 137 – 144 , 146 – 152 , 165 – 185 ]…”

Section: Results: Diffracting and Weaving Storylinesunclassified

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project

Reimer-Kirkham,

Astle,

Ero

et al. 2024

Int J Equity Health

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Background Persons with albinism face challenges to their wellbeing, safety, and security, ranging from vision impairment and skin cancer to stigma and discrimination. In some regions, they also face human rights atrocities including mutilation and murder. Research on human rights and albinism is a relatively new field that has gained momentum since the United Nations appointment of an Independent Expert on the enjoyment of human rights by persons with albinism. In this paper, we present the results of a mixed methods study undertaken to identify priorities for research, advocacy, and policy on albinism and human rights. Methods The first component was a synthesis of peer-reviewed and grey literatures at the nexus of albinism, spiritual/cultural beliefs and practices, and human rights. We then conducted a priority-setting survey, informed by Delphi methods, on extant knowledge-practice gaps and research, advocacy, and policy priorities. Inclusion criteria included demonstrated expertise in the field (e.g., peer-reviewed publications, funded research), membership on national or international associations, or advocacy (civil society organizations) of more than 2 years in albinism and human rights. Thereafter, we gathered leading researchers, policy-makers, and civil society stakeholders for a Roundtable to gain consensus on these priorities. Results Access to skin and vision care, and education were not deemed high priority for research, likely because the evidence supporting the need for these is well established. However, they were priorities for advocacy and policy: what is needed is mobilization of this evidence through advocacy and implementation of such services (policy). Other social determinants of health (rurality, poverty, and gender equality) are present as subtext in the findings, more so than priorities for research, advocacy, or policy, despite their preponderance in the lives of persons with albinism. Research was prioritized on stigma and discrimination; advocacy; and witchcraft, but with some differentiation between Global North and Global South priorities. Priorities for research, advocacy, and policy vary in keeping with the explanatory frameworks at play, including how harmful practices and witchcraft are viewed. Conclusions The lived experience of albinism is profoundly shaped by the social determinants of health (SDOH). Threats to the security and well-being of persons with albinism should be viewed through a human rights lens that encompasses the explanatory frameworks at play.

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“…They reflect, replicate, and entrench societal unequal power-play over women (Gold 2002). Thus researchers have come to realise that we live in a sexually objectifying environment (Tiggeman and Boundy 2008;Vander Kolk and Bright, 1983;Wan 2003). In several studies, economic factors have often been linked to the objectification of women (Gold 2002;Moffitt and Szymanski 2011;Palmer 2007), whereby women's bodies are used for profit.…”

Section: A D I 224mentioning

confidence: 99%

“…Yet very little research has been done on the social and emotional experience of people with albinism on sexually related problems. The physical anomalies of PWA most especially oculocutaneous albinism (OCA) have caused people with this condition to be stigmatized, discriminated against, and to be the object of violence, and unwanted sexual advances often not reported (Gold 2002;Palmer 2007;Vander Kolk & Bright 1983;Wan 2003). Research has shown that there are two types of albinism.…”

Section: A D I 224mentioning

confidence: 99%

Beyond Asexualization: Narratives of Sexual Objectification of Persons with Albinism in Nigeria

Ikuomola¹

2019

eap

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Often overemphasised, in most sexuality studies, is that persons with disability, especially women, face experiences of asexualization rather than sexualisation. Similarly overemphasised is the faulty monolithic assumption that economic deprivation is the causal factor in the objectification of persons with disability. This has unintentionally created an expectation that objectifying environments are the inevitable and immutable default to economic distress. This is often not the case within the socio-cultural space of persons with albinism (PWA) in Southern Nigeria, where their presence is obvious. As a departure, this study examined the sexual objectification of PWA in Nigeria. It was discovered that at some points in the life course of PWA, most especially among the women with the development and aging of their body, objectification added to mental health risks such as withdrawal syndrome, isolation and indolence. The study concludes that cultural attitudes not only creates and threatens PWA sexed and gendered body confidence in relationships but also for them to be labelled and misconstrued as sexually inactive.

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Albinism: A Survey of Attitudes and Behavior

Cited by 8 publications

References 2 publications

Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review

Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project

Beyond Asexualization: Narratives of Sexual Objectification of Persons with Albinism in Nigeria

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