Social science & medicine (1982) · 2025
Dyadic adjustment of persons with albinism and their significant other: A Bayesian mediation model of the Actor-Partner Interdependence (APIMeM).
СтатьяПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод в очереди
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Fournier Hugo, Pillaud Nicolas, Morice-Picard Fanny, Hadj-Rabia Smail, Arveiler Benoit, Quintard Bruno
Аннотация
BACKGROUND: Limited standardized empirical research exists in France on the psychosocial implications of albinism, prompting an investigation into how affected persons adapt to their disabilities. Recent advancements in health psychology have led researchers to adopt a systemic approach, considering disabilities and involving close relatives in the adaptation process. The aim of this study was to explore the mediating role of dyadic coping within family dyads, where one is a person with albinism (PWA) and the other is a close relative.
METHODS: The study included 38 family dyads with each member responding individually to an online standardized protocol. Participants were recruited through convenience sampling, facilitated by a patient association (Genespoir) and professionals from medical referral centers involved in the project. Dyads with a PWA born, raised, or residing in Africa during the study were excluded. Three statistical models based on Actor-Partner Interdependence Mediation Model (APIMeM) were Bayesian-tested using weakly informative priors.
RESULTS: Models 2 and 3 emerged as the most effective at explaining the data. Model 2 showed the mediating role of common dyadic coping between the quality of the relationship and anxiety level and suggested that PWAs tend to feel more anxious when they report high levels of shared adaptation with their close relative. Model 3 highlighted the role of albinism-related emotional impact in mediating the relationship between stigma consciousness and overall quality of life, but this was observed only among PWAs. Greater consciousness of stigma among PWAs was associated with increased emotional impact, resulting in a more impaired quality of life.
CONCLUSIONS: Social implications of albinism seem to be crucial in dyadic adjustment to albinism. Personal perceptions and the associated stigma (i.e., ableism) linked to albinism may influence the ambivalent manner in which individuals adapt to their condition. Future studies should further investigate these intricate mechanisms, as outlined by our proposed conceptual model.
METHODS: The study included 38 family dyads with each member responding individually to an online standardized protocol. Participants were recruited through convenience sampling, facilitated by a patient association (Genespoir) and professionals from medical referral centers involved in the project. Dyads with a PWA born, raised, or residing in Africa during the study were excluded. Three statistical models based on Actor-Partner Interdependence Mediation Model (APIMeM) were Bayesian-tested using weakly informative priors.
RESULTS: Models 2 and 3 emerged as the most effective at explaining the data. Model 2 showed the mediating role of common dyadic coping between the quality of the relationship and anxiety level and suggested that PWAs tend to feel more anxious when they report high levels of shared adaptation with their close relative. Model 3 highlighted the role of albinism-related emotional impact in mediating the relationship between stigma consciousness and overall quality of life, but this was observed only among PWAs. Greater consciousness of stigma among PWAs was associated with increased emotional impact, resulting in a more impaired quality of life.
CONCLUSIONS: Social implications of albinism seem to be crucial in dyadic adjustment to albinism. Personal perceptions and the associated stigma (i.e., ableism) linked to albinism may influence the ambivalent manner in which individuals adapt to their condition. Future studies should further investigate these intricate mechanisms, as outlined by our proposed conceptual model.