Dyadic adjustment and quality of life in albinism:a pilot study on their shared lived experiences with their loved ones - 06/06/26

Doi : 10.1016/j.lpm.2026.104363

Hugo Fournier ^1,^⁎ , Nicolas Pillaud ¹, Marie Hasdenteufel ¹, Constance Garrouteigt ², Smail Hadj-Rabia ³, Benoit Arveiler ^2,⁴, Fanny Morice-Picard ², Bruno Quintard ¹

¹ Laboratory of Psychology (LabPsy) UR 4139, University of Bordeaux, Bordeaux, France

² CHU Bordeaux, Bordeaux, France

³ APHP Paris Necker-Enfants Malades, Paris, France

⁴ Laboratory of Rare Diseases: Genetics and Metabolism (MRGM) INSERM U1211, University of Bordeaux, Bordeaux, France

^⁎ Corresponding author. University of Bordeaux, Laboratory of Psychology UR 4139, F-33000 Bordeaux, France, 3 ter Place de la Victoire, Bâtiment A - 1er étage, 33076 Bordeaux CEDEX University of Bordeaux, Laboratory of Psychology UR 4139, F-33000 Bordeaux, France, 3 ter Place de la Victoire, Bâtiment A - 1er étage Bordeaux CEDEX 33076

Sous presse. Manuscrit accepté. Disponible en ligne depuis le Saturday 06 June 2026

Abstract

Background

. Albinism, a group of rare genetic conditions characterized by visual impairment and variable hypopigmentation, is extensively studied in biomedical research. However, the psychosocial aspects, particularly in France, remain under-investigated, contributing to the invisibility of this sensory disability.

Objectives

. The ALBIPSY project aimed to explore the lived experience of persons with albinism (PWAs) and their significant others (SOs), and to examine the role of dyadic adjustment in maintaining their quality of life.

Methods and Settings

. This study employed a sequential mixed-methods design, beginning with an exploratory qualitative phase involving nine dyads (PWAs and one of their parents), followed by a correlational quantitative study covering the entire sample (N=38 dyads).

Results

. Qualitative results highlighted several critical themes, including the perception of albinism (as a disease or not), perceived difficulties, resources and facilitators, and the crucial role of the dyadic relationship in adaptation. Intriguingly, enhanced adaptive capacities sometimes co-existed with a significant, high subjective burden associated with albinism. Counter-intuitively, quantitative data suggested that higher levels of dyadic coping were associated with increased anxiety in PWA. This finding warrants further reflection on the influence of ableist norms, transmitted parental values, and the perception of albinism as an illness.

Conclusion

. This paper reviews the main findings and underscores the necessity of a multidisciplinary approach sensitive to the relational dynamics and specific needs of PWA and their partners.

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Keywords : Albinism, rare diseases, dyadic coping, disability adjustment, mixed study, systemic approach

Plan

Qualitative Results: How do parents and their adult child with albinism cope with this condition?

Quantitative Results: How do dyads of PWAs and their Significant Others (SOs) cope with this condition?

Discussion

Research et clinical perspectives

Conclusions

Authors Contributions

Uncited References

CRediT authorship contribution statement

	Acknowledgements
	We would like to express our sincere gratitude to Antoine Gliksohn and Béatrice Jouanne for their invaluable support throughout the ALBIPSY project. As responsible members of the patient albinism association Genespoir, they provided insightful guidance and assistance in tailoring the study protocol to meet the participants' needs. Additionally, they played a pivotal role in promoting the study within their community and facilitating participant recruitment.
	Funding
	This work was supported by the French Rare Diseases Foundation (Foundation des Maladies Rares).
	Competing interests
	The authors declare that they have no competing interests. The present article synthesizes and expands upon findings previously presented in the first author's doctoral dissertation and two earlier publications (Fournier et al., 2025, 2024)
	Declaration of generative AI in scientific writing
	During the preparation of this work the author(s) used Gemini in order to facilitate the process of writing and rephrasing in English, given that the team primarily operates in French. After using this tool, the author(s) reviewed and edited the content as needed and take(s) full responsibility for the content of the publication.
	Availability of data and materials
	The datasets produced and analyzed during the current study are not publicly available because the informed consent did not include provision for the dissemination of all data from the questionnaire responses in an open-access format, even when anonymized. Plus, sharing interviews transcriptions, even anonymized, openly could compromise the confidentiality and anonymity of the participants, infringing upon their rights to data protection. However, to adhere to ethical guidelines, the corresponding author may provide access to dyadic datasets and interviews transcriptions upon reasonable request.