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Dyadic adjustment of persons with albinism and their significant other: A Bayesian mediation model of the Actor-Partner Interdependence (APIMeM)

dc.rights.licenseopenen_US
hal.structure.identifierLaboratoire de psychologie [LabPsy]
dc.contributor.authorFOURNIER, Hugo
hal.structure.identifierLaboratoire de psychologie [LabPsy]
dc.contributor.authorPILLAUD, Nicolas
ORCID: 0000-0003-3921-7816
IDREF: 256625468
hal.structure.identifierCentre Hospitalier Universitaire de Bordeaux [CHU Bordeaux]
dc.contributor.authorMORICE-PICARD, Fanny
hal.structure.identifierHôpital Necker - Enfants Malades [AP-HP]
dc.contributor.authorHADJ-RABIA, Smaïl
hal.structure.identifierCentre Hospitalier Universitaire de Bordeaux [CHU Bordeaux]
hal.structure.identifierLaboratoire Maladies Rares: Génétique et Métabolisme (Bordeaux) [U1211 INSERM/MRGM]
dc.contributor.authorARVEILER, Benoit
hal.structure.identifierLaboratoire de psychologie [LabPsy]
dc.contributor.authorQUINTARD, Bruno
ORCID: 0000-0002-2206-6137
IDREF: 057867968
dc.date.accessioned2025-04-24T09:17:40Z
dc.date.available2025-04-24T09:17:40Z
dc.date.issued2025-02
dc.identifier.issn0277-9536en_US
dc.identifier.urihttps://oskar-bordeaux.fr/handle/20.500.12278/206393
dc.description.abstractEnBackground: 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.
dc.language.isoENen_US
dc.subject.enAlbinism
dc.subject.enBayesian analysis
dc.subject.enDisability adjustment
dc.subject.enDyadic coping
dc.subject.enRare diseases
dc.subject.enSystemic approach
dc.title.enDyadic adjustment of persons with albinism and their significant other: A Bayesian mediation model of the Actor-Partner Interdependence (APIMeM)
dc.title.alternativeSoc Sci Med .en_US
dc.typeArticle de revueen_US
dc.identifier.doi10.1016/j.socscimed.2025.117684en_US
dc.subject.halSciences de l'Homme et Société/Psychologieen_US
dc.identifier.pubmed39884087en_US
bordeaux.journalSocial Science & Medicineen_US
bordeaux.page117684en_US
bordeaux.volume367en_US
bordeaux.hal.laboratoriesLaboratoire de psychologie (LabPsy) - UR 4139en_US
bordeaux.hal.laboratoriesMaladies Rares : Génétique et Métabolisme (MRGM) - UMR 1211en_US
bordeaux.institutionUniversité de Bordeauxen_US
bordeaux.peerReviewedouien_US
bordeaux.inpressnonen_US
bordeaux.identifier.funderIDFondation Maladies Raresen_US
bordeaux.import.sourcecrossref
hal.identifierhal-05045243
hal.version1
hal.date.transferred2025-04-24T09:17:43Z
hal.popularnonen_US
hal.audienceInternationaleen_US
hal.exporttrue
workflow.import.sourcecrossref
dc.rights.ccPas de Licence CCen_US
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