A participatory research to design a survey providing a portrait of the life of people with visual impairments

References

• Assi, L., F. Chamseddine, P. Ibrahim, H. Sabbagh, L. Rosman, N. Congdon, J. Evans, et al. 2021. “A Global Assessment of Eye Health and Quality of Life: A Systematic Review of Systematic Reviews.” JAMA Ophthalmology 139 (5): 526–541. https://doi.org/10.1001/jamaophthalmol.2021.0146
   PubMed Web of Science ®Google Scholar
• Augestad, L. B. 2017. “Mental Health among Children and Young Adults with Visual Impairments: A Systematic Review.” Journal of Visual Impairment & Blindness 111 (5): 411–425. https://doi.org/10.1177/0145482X1711100503
   Web of Science ®Google Scholar
• Barnes, C. 2003. “What a Difference a Decade Makes: Reflections on Doing ‘Emancipatory’ disability Research.” Disability & Society 18 (1): 3–17. https://doi.org/10.1080/713662197
   Google Scholar
• Bell, E. C., and A. M. Silverman. 2018. “Rehabilitation and Employment Outcomes for Adults Who Are Blind or Visually Impaired: An Updated Report.” Journal of Blindness Innovation & Research 8 (1)
   Google Scholar
• Bourrée, F., P. Michel, and L. R. Salmi. 2008. “Méthodes De Consensus : Revue Des Méthodes Originales Et De Leurs Grandes Variantes Utilisées En Santé Publique.” Revue D’epidemiologie Et De Sante Publique 56 (6): 415–423. https://doi.org/10/dm76cc
   PubMed Web of Science ®Google Scholar
• Brézin, A. P., A. Lafuma, F. Fagnani, M. Mesbah, and G. Berdeaux. 2005. “Prevalence and Burden of Self-Reported Blindness, Low Vision, and Visual Impairment in the French Community: A Nationwide Survey.” Archives of Ophthalmology (Chicago, Ill.: 1960) 123 (8): 1117–1124. https://doi.org/10.1001/archopht.123.8.1117
   PubMedGoogle Scholar
• Brock, A., J.-L. Vinot, B. Oriola, S. Kammoun, P. Truillet, and C. Jouffrais. 2010. “Méthodes et outils de conception participative avec des utilisateurs non-voyants.” In Proceedings of the 22nd Conference on L’Interaction Homme-Machine, 65–72. https://doi.org/10.1145/1941007.1941017
   Google Scholar
• Défenseur des droits. 2020. “La mise en œuvre de la Convention relative aux droits des personnes handicapées (CIDPH).” https://www.defenseurdesdroits.fr/sites/default/files/atoms/files/rap-cidph-num-16.07.20.pdf
   Google Scholar
• Desrosiers, J., M.-C. Wanet-Defalque, K. Témisjian, J. Gresset, M.-F. Dubois, J. Renaud, C. Vincent, J. Rousseau, M. Carignan, and O. Overbury. 2009. “Participation in Daily Activities and Social Roles of Older Adults with Visual Impairment.” Disability and Rehabilitation 31 (15): 1227–1234. https://doi.org/10.1080/09638280802532456
   PubMed Web of Science ®Google Scholar
• Douglas, G., S. Pavey, C. Corcoran, and B. Clements. 2011. “Evaluating the Use of the ICF as a Framework for Interviewing People with a Visual Impairment about Their Mobility and Travel.” British Journal of Visual Impairment 30 (1): 6–21. https://doi.org/10.1177/0264619611428932
   Google Scholar
• Duckett, P., and R. Pratt. 2001. “The Researched Opinions on Research: Visually Impaired People and Visual Impairment Research.” Disability & Society 16 (6): 815–835. https://doi.org/10.1080/09687590120083976
   Web of Science ®Google Scholar
• Duckett, P., and R. Pratt. 2007. “The Emancipation of Visually Impaired People in Social Science Research Practice.” British Journal of Visual Impairment 25 (1): 5–20. https://doi.org/10.1177/0264619607071771
   Google Scholar
• Ducos, F. 1983. “Delphi Et Analyses D’interaction.” Futuribles 71: 37–44.
   Google Scholar
• Etikan, I., R. Alkassim, and S. Abubakar. 2016. “Comparision of Snowball Sampling and Sequential Sampling Technique.” Biometrics & Biostatistics International Journal 3 (1): 55. https://doi.org/10.15406/bbij.2016.03.00055
   Google Scholar
• Finkelstein, V., and S. French. 1993. “Towards a Psychology of Disability.” In Disabling Barriers-Enabling Environments, edited by J. Swain, S. French, C. Barnes, and C. Thomas. 26–33. London: Sage.
   Google Scholar
• Fougeyrollas, P., L. Noreau, H. Bergeron, R. Cloutier, S. A. Dion, and G. St-Michel. 1998. “Social Consequences of Long Term Impairments and Disabilities: Conceptual Approach and Assessment of Handicap.” International Journal of Rehabilitation Research. Internationale Zeitschrift Fur Rehabilitationsforschung. Revue Internationale De Recherches De Readaptation 21 (2): 127–141. https://doi.org/10.1097/00004356-199806000-00002
   PubMed Web of Science ®Google Scholar
• Frauenberger, C., J. Good, and W. Keay-Bright. 2011. “Designing Technology for Children with Special Needs: Bridging Perspectives through Participatory Design.” CoDesign 7 (1): 1–28. https://doi.org/10.1080/15710882.2011.587013
   Web of Science ®Google Scholar
• Fuller, S. D., L. I. Mudie, C. Siordia, B. K. Swenor, and D. S. Friedman. 2018. “Nationwide Prevalence of Self-Reported Serious Sensory Impairments and Their Associations with Self-Reported Cognitive and Functional Difficulties.” Ophthalmology 125 (4): 476–485. https://doi.org/10/gc9w6g
   PubMed Web of Science ®Google Scholar
• Garbutt, R. 2009. “Is There a Place within Academic Journals for Articles Presented in an Accessible Format?” Disability & Society 24 (3): 357–371. https://doi.org/10.1080/09687590902789537
   Web of Science ®Google Scholar
• Gold, D., and H. Simson. 2005. “Identifying the Needs of People in Canada Who Are Blind or Visually Impaired: Preliminary Results of a Nation-Wide Study.” International Congress Series 1282: 139–142. https://doi.org/10/ddn6hs
   Google Scholar
• Hodge, N. 2008. “Evaluating Lifeworld as an Emancipatory Methodology.” Disability & Society 23 (1): 29–40. https://doi.org/10.1080/09687590701725575
   Web of Science ®Google Scholar
• Jones, G. C., J. E. Crews, and M. L. Danielson. 2010. “Health Risk Profile for Older Adults with Blindness: An Application of the International Classification of Functioning, Disability, and Health Framework.” Ophthalmic Epidemiology 17 (6): 400–410. https://doi.org/10.3109/09286586.2010.528137
   PubMed Web of Science ®Google Scholar
• Kitchin, R. 2000. “The Researched Opinions on Research: Disabled People and Disability Research.” Disability & Society 15 (1): 25–47. https://doi.org/10.1080/09687590025757
   Web of Science ®Google Scholar
• Levasseur, M., J. Desrosiers, and D. S. C. Tribble. 2007. “Comparing the Disability Creation Process and International Classification of Functioning, Disability and Health Models.” Canadian Journal of Occupational Therapy. Revue Canadienne D’ergotherapie 74 (5_suppl): 233–242. https://doi.org/10.1177/000841740707405S02
   PubMedGoogle Scholar
• Lysaght, R., R. Kranenburg, C. Armstrong, and T. Krupa. 2016. “Participant Recruitment for Studies on Disability and Work: Challenges and Solutions.” Journal of Occupational Rehabilitation 26 (2): 125–140. https://doi.org/10.1007/s10926-015-9594-1
   PubMed Web of Science ®Google Scholar
• Mick, Paul, Maksim Parfyonov, Walter Wittich, Natalie Phillips, Dawn Guthrie, and M. Kathleen Pichora-Fuller. 2018. “Associations between Sensory Loss and Social Networks, Participation, Support, and Loneliness: Analysis of the Canadian Longitudinal Study on Aging.” Canadian Family Physician Medecin De Famille Canadien 64 (1): e33–e41.
   PubMed Web of Science ®Google Scholar
• Miles, M. B., A. M. Huberman, and J. Saldaña. 2018. Qualitative Data Analysis: A Methods Sourcebook. 3rd ed. Thousand Oaks: Sage publications.
   Google Scholar
• Mormiche, P. 1998. “ L’enquête HID de l’INSEE. Objectifs et schéma organisationnel.” Courrier Des statistiques-INSEE 87–88: 7–18.
   Google Scholar
• Noreau, L., J. Desrosiers, L. Robichaud, P. Fougeyrollas, A. Rochette, and C. Viscogliosi. 2004. “Measuring Social Participation: Reliability of the LIFE-H in Older Adults with Disabilities.” Disability and Rehabilitation 26 (6): 346–352. https://doi.org/10.1080/09638280410001658649
   PubMed Web of Science ®Google Scholar
• Oliver, M. 1992. “Changing the Social Relations of Research Production?” Disability, Handicap & Society 7 (2): 101–114. https://doi.org/10.1080/02674649266780141
   Google Scholar
• Oliver, M. 2013. “The Social Model of Disability: Thirty Years on.” Disability & Society 28 (7): 1024–1026. https://doi.org/10.1080/09687599.2013.818773
   Web of Science ®Google Scholar
• Priestley, M., L. Waddington, and C. Bessozi. 2010. “New Priorities for Disability Research in Europe: Towards a User-Led Agenda.” Alter 4 (4): 239–255. https://doi.org/10.1016/j.alter.2010.07.001
   Google Scholar
• Renaud, J., and E. Bédard. 2013. “Depression in the Elderly with Visual Impairment and Its Association with Quality of Life.” Clinical Interventions in Aging 8: 931–943. https://doi.org/10.2147/CIA.S27717
   PubMed Web of Science ®Google Scholar
• Richardson, M. 1997. “Participatory Research Methods: People with Learning Difficulties.” British Journal of Nursing (Mark Allen Publishing) 6 (19): 1114–1121. https://doi.org/10.12968/bjon.1997.6.19.1114
   PubMedGoogle Scholar
• Rix, J., H. G. Carrizosa, J. Seale, K. Sheehy, and S. Hayhoe. 2020. “The While of Participation: A Systematic Review of Participatory Research Involving People with Sensory Impairments and/or Intellectual Impairments.” Disability & Society 35 (7): 1031–1057. https://doi.org/10.1080/09687599.2019.1669431
   Web of Science ®Google Scholar
• Salminen, A.-L., and M. E. Karhula. 2014. “Young Persons with Visual Impairment: Challenges of Participation.” Scandinavian Journal of Occupational Therapy 21 (4): 267–276. https://doi.org/10.3109/11038128.2014.899622
   PubMed Web of Science ®Google Scholar
• Sander, M.-S., M.-C. Bournot, F. Lelièvre, and A. Tallec. 2005. “ La population en situation de handicap visuel en France. Importance, caractéristiques, incapacités fonctionnelles et difficultés sociales.” Exploitation d’enquêtes HID 1998/99. Observatoire Régional de la Santé des Pays de la Loire 2005.
   Google Scholar
• Schölvinck, A.-F M., C. A. C. M. Pittens, and J. E. W. Broerse. 2017. “The Research Priorities of People with Visual Impairments in The Netherlands.” Journal of Visual Impairment & Blindness 111 (3): 201–217. https://doi.org/10/ggzx8q
   Web of Science ®Google Scholar
• Simui, F., S. Kasonde-Ngandu, A. M. Cheyeka, J. Simwinga, and D. Ndhlovu. 2018. “Enablers and Disablers to Academic Success of Students with Visual Impairment: A 10-Year Literature Disclosure, 2007–2017.” British Journal of Visual Impairment 36 (2): 163–174. https://doi.org/10.1177/0264619617739932
   Web of Science ®Google Scholar
• Visit to France: report of the Special Rapporteur on the Rights of Persons with Disabilities. 2019. Promotion and Protection of All Human Rights, Civil, Political, Economic, Social and Cultural Rights, Including the Right to Development [Data Set]. 1–20. Human Rights Council. https://digitallibrary.un.org/record/1663797?ln=fr
   Google Scholar
• Valente, D., F. Bara, and E. Gentaz. 2018. “Un guide pour concevoir des livres multisen­soriels accessibles à tous avec la méthode du design participatif. Exemple d’un livre conçu avec les enfants en situation de handicap visuel.” https://hal.archives-ouvertes.fr/hal-02098388/document
   Google Scholar
• Valente, D., L. Chennaz, C. Chabaud, C. Malet, and E. Gentaz. 2022. “Co-conception d’un entraînement multisensoriel destiné à développer les compétences émotionnelles chez les enfants en situation de handicap visuel : apports de la méthodologie de design participatif impliquant les professionnels de la déficience visuelle.” ANAE 178: 405–414.
   Google Scholar
• Williams, P. L., and C. Webb. 1994. “The Delphi Technique: A Methodological Discussion.” Journal of Advanced Nursing 19 (1): 180–186. https://doi.org/10.1111/j.1365-2648.1994.tb01066.x
   PubMed Web of Science ®Google Scholar
• Winance, M. 2007. “Being Normally Different? Changes to Normalization Processes: From Alignment to Work on the Norm.” Disability & Society 22 (6): 625–638. https://doi.org/10.1080/09687590701560261
   Web of Science ®Google Scholar
• World Health Organization. 2001. International Classification of Functioning, Disability and Health. Geneva, Switzerland: World Health Organization.
   Google Scholar
• World Medical Association. 2013. “World Medical Association Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects.” JAMA 310 (20): 2191–2194. https://doi.org/10.1001/jama.2013.281053
   PubMed Web of Science ®Google Scholar
• Zarb, G. 1992. “On the Road to Damascus: First Steps towards Changing the Relations of Disability Research Production.” Disability, Handicap & Society 7 (2): 125–138. https://doi.org/10.1080/02674649266780161
   Google Scholar