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

Abstract

Little recent data is available about people with visual impairments in France. This article presents the design process of an online survey aimed at providing a portrait of the life of the people with visual impairments, based on participatory research. Questions were determined and refined over several phases, including focus groups and a consensus process using the Delphi method. A total of 49 people participated in the project: people with visual impairments, relatives, professionals and researchers. The participatory design process resulted in a final survey that includes 191 questions about various topics. The value and challenges of participatory research are discussed. For example, the participatory nature of the project and its reach encouraged participants to stay involved even though the development process was time consuming. The data collected with the survey will be used to capture the diversity of people with visual impairments in terms of (dis)ability, needs and resources.

Points of Interest

• Little recent data is available concerning the daily life of people with visual impairment

• A survey was designed using participatory research with people with visual impairments, relatives or caregivers, visual impairment professionals and researchers.

• Focus groups and consensus methods were used to both give participants some voice to express their personal experience and select issues collectively judged as relevant.

• This paper illustrates that participatory research with people with visual impairments is possible, and presents the added value and main challenges of this approach.

• This survey will allow a better understanding of the French population affected by visual impairment and its impacts on a range of aspects of daily life.

Keywords:

• Low vision
• blindness
• Delphi method
• focus group
• daily life
• community-based participatory research

Acknowledgements

The authors wish to thank the nine non-profit organizations and public institutions involved in the Homère project: the Fédération des Aveugles et Amblyopes de France, the Fédération Française des Associations de Chiens guides d’aveugles (FFAC), Voir Ensemble, the Association Nationale des Parents d’Enfants Aveugles (ANPEA), the Institut National des Jeunes Aveugles (INJA), a national public institution for special education, the Association Départementale des Pupilles de l’Enseignement Public du Rhône et de la Métropole de Lyon (AD PEP 69/ML), the Groupement des Associations Partenaires d’Action Sociale (GAPAS), the Association Valentin Haüy (AVH), and RETINA France. We greatly thank all the participants for their contributions. In addition, we would like to thank our research assistants for helping with data collection (Saphora Itim, Sara Grange, Marie Hibars-Cuny, Estelle Janot and Héloïse Rosset), Caroline Labenere for helping with the survey final version formatting, and Adolphe Béquet for proof-reading of the article. This article was supported by the Maison des Sciences de l’Homme Lyon Saint-Etienne.

This work was financed by the Association de gestion du fonds pour l’insertion professionnelle des personnes handicapées (Agefiph), OPTIC 2000, the Comité national Coordination Action Handicap (CCAH), Klésia, and the Caisse nationale d’assurance vieillesse (CNAV). At the time of the study, Amandine Afonso Jaco was a postdoctoral fellowship researcher (financed by the RASPUTIN project; ANR-18-CE38-0004).

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was financed by the Association de gestion du fonds pour l’insertion professionnelle des personnes handicapées (Agefiph), OPTIC 2000, the Comité national Coordination Action Handicap (CCAH), Klésia, and the Caisse nationale d’assurance vieillesse (CNAV). At the time of the study, Amandine Afonso Jaco was a postdoctoral fellowship researcher (financed by the RASPUTIN project; ANR-18-CE38-0004). We greatly thank all the participants for their contributions. In addition, we would like to thank our research assistants for helping with data collection (Saphora Itim, Sara Grange, Marie Hibars-Cuny, Estelle Janot and Héloïse Rosset), Caroline Labenere for helping with the survey final version formatting, and Adolphe Bequet for proof-reading of the article. This article was supported by the Maison des Sciences de l’Homme Lyon Saint-Etienne.