Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

Huang, Mei-Zen; Chen, Lili; Hung, Shu-Ling; Puthussery, Shuby

doi:10.1080/09687599.2020.1867071

Cited by 7 publications

(14 citation statements)

References 33 publications

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“…On the one hand, because of the beliefs and ritual practices that constantly threaten PWA's lives, families are subjected to an oppressive climate of fear and stress. Parents would then tend to become overprotective of their children, a behavior that is regularly criticized by PWA once they are adults [31,33,[38][39][40]42].…”

Section: Impact On Family Functioningmentioning

confidence: 99%

“…On the other hand, Aborisade (2021) conducted a study on the childhood experience of PWA, whose results testified to a great propensity for intra-familial violence within Nigerian households. Between parents who abandon them and those who mistreat them, young PWA were often the target of physical violence (e.g., one third had physical scars) and psychological abuse from their relatives (e.g., taunting, name-calling, humiliation, confinement/imprisonment) [37,42]. This violence can be attributed to guilt-ridden family relationships, especially in connection with local superstitions concerning families' cursed blood or divine punishment.…”

Section: Impact On Family Functioningmentioning

confidence: 99%

“…Most studies addressed the social functioning of PWA, especially problems related to stigma and discrimination. They explained that stigma associated with albinism may be due to physical appearance (hair and skin colour) [32,33,37,38,[40][41][42][43]111] or to various myths and superstitions ("albinos don't die, they vanish"; "albinos have magical powers"; "albinism is contagious"; "albinism is the mark of a curse"; "albinos' body parts can cure diseases"; "albinos are the result of secret affairs" etc.) [32,33,37,40,42].…”

Section: Perception Of the Illness And Social Interactionsmentioning

confidence: 99%

“…They explained that stigma associated with albinism may be due to physical appearance (hair and skin colour) [32,33,37,38,[40][41][42][43]111] or to various myths and superstitions ("albinos don't die, they vanish"; "albinos have magical powers"; "albinism is contagious"; "albinism is the mark of a curse"; "albinos' body parts can cure diseases"; "albinos are the result of secret affairs" etc.) [32,33,37,40,42]. All of these stigmas lead society to reject and be unkind toward PWA, especially in African countries [32,33,37,38,111].…”

Section: Perception Of the Illness And Social Interactionsmentioning

confidence: 99%

“…Moreover, the last decade has seen a significant amount of research emerge in health psychology regarding adults with albinism. [31][32][33][34][35][36][37][38][39][40][41][42][43][44][45] "Neurofibromatosis type 1 (NF1) is a clinically heterogeneous, neurocutaneous genetic disorder characterized by café-au-lait spots, iris Lisch nodules, axillary and inguinal freckling, and multiple neurofibromas" [46]. NF1 has already been the subject of numerous studies in psychology, particularly in a child or adolescent's development [47][48][49][50][51][52][53][54][55][56][57][58] but also in their parents' experiences [59][60][61][62][63][64][65][66][67].…”

Section: Introductionmentioning

confidence: 99%

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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: Impact On Family Functioningmentioning

confidence: 99%

Section: Impact On Family Functioningmentioning

confidence: 99%

Section: Perception Of the Illness And Social Interactionsmentioning

confidence: 99%

Section: Perception Of the Illness And Social Interactionsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

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

View full text Add to dashboard Cite

show abstract

Employment barriers and opportunities faced by people with albinism. A case of youths with albinism in Harare, Zimbabwe

Maunganidze

Machiha

Mapuranga

2022

Cogent Social Sciences

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Identifying psychosocial challenges and introducing coping strategies for people with albinism

Varkaneh¹,

Koolaee

Sheikhi

2022

British Journal of Visual Impairment

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Albinism refers to a group of genetic disorders that, following genetic mutations, lead to impaired melanin production, resulting in skin allergies and visual impairment in affected people. Visual impairment brings not only physical limitations and challenges but also many social problems, including psychosocial challenges, leading to different experiences in the lives of these people. To this end, using a qualitative content analysis approach, the present study aimed to identify psychosocial challenges and introduce coping strategies for people with albinism living in Tehran in 2021. The participants were people with albinism aged 20 to 40 years in Tehran. The participants were selected from among members of the Iranian Albinism Association (AMAL) using purposive sampling. The data were saturated through semi-structured interviews with 20 participants in the research sample. The collected data were analyzed using conventional content analysis. Analysis of the participants’ experiences revealed three main themes: (1) The challenges and difficulties of living with albinism, (2) welfare, specialized facilities, and support seeking, and (3) strategies for coping with psychosocial challenges. According to the findings, albinism, due to its limitations, brings many bitter and painful experiences in education, job finding, and marriage for affected patients. The condition is also associated with some limitations such as visual impairment affecting various aspects of the patient’s life and different developmental periods. Each person may have different interpretations of their challenges and thus seek unique strategies for coping with the challenges. The findings of this study can have some implications for mental health professionals and managers of relevant institutions and to become aware of the nature and complications of albinism, the challenges faced by people with albinism, and the special needs of these people. Findings from this study can be used to identify the relationship between albinism, the challenges of living with albinism, and the special needs of these individuals, by mental health professionals, related institutions, and psychosocial environments.

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Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

Cited by 7 publications

References 33 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

Employment barriers and opportunities faced by people with albinism. A case of youths with albinism in Harare, Zimbabwe

Identifying psychosocial challenges and introducing coping strategies for people with albinism

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