Résumés
Résumé
Cet article est le premier de deux articles portant sur une étude qui a pour but d’identifier les meilleures pratiques pour l’utilisation du groupe de discussion focalisée en général, puis avec des participants ayant une déficience intellectuelle en particulier. Le premier article présente les meilleures pratiques répertoriées lors de la recension des écrits. Les résultats de cette recension sont regroupés en cinq dimensions : le recrutement des participants, le consentement à la recherche, la structure des rencontres, l’animation des rencontres ainsi que leur contenu. Les résultats proposent des aménagements aux façons de faire traditionnelles du groupe de discussion focalisée afin de les rendre plus accessibles à une diversité de participants et de faciliter l’expression de leur point de vue.
Abstract
This is the first of two articles relating to our research whose objective was to identify the best practices in the utilization of focus groups where the participants have intellectual disabilities. The first article presents the findings of the literature survey of focus group best practices both in the general case and in situations involving participants with intellectual disabilities. The results of the literature survey are grouped into five categories: recruitment of participants, the consent process, the structure of the focus group meetings, their facilitation and their content. Our results propose specific modifications to traditional focus group practices in order to better accommodate the diversity of the participants and to foster active discourse and expression of opinions. In particular, we suggest ways to utilize this research method to deepen our understanding of the concerns, experiences and expectations of the individuals having intellectual disabilities.
Parties annexes
Bibliographie
- Abbeduto, L., Hesketh, L. J. (1997). Pragmatic development in individuals with mental retardation: Learning to Use Language in Social Interactions. Mental Retardation and Developmental Disabilities Research Reviews, 3, 323-333.
- Abbeduto, L., Warren, S. F., Conners, F. A. (2007). Language Development in Down Syndrome: from the Prelinguistic Period to the Acquisition of Literacy. Mental Retardation and Developmental Disabilities Research Reviews, 13, 247-261.
- Abbott, S., McConkey, R. (2006). The barriers to social inclusion as perceived by people with intellectual disabilities. Journal of Intellectual Disabilities, 10(3), 275-287.
- Adams, A., Cox, A. L. (2008). Questionnaires, in-depth interviews and focus groups. In P. Cairns et A. L. Cox (Eds.), Research Methods for human-computer interaction (pp. 17-34). New-York : Cambridge University Press.
- Agan, J., Koch, L. J., Rumrill Jr, P. D. (2008). The use of focus groups in rehabilitation research. Work, 31, 259-269.
- Atkinson, D. (1988). Research interviews with people with mental handicaps. Mental Handicap Research, 1(1), 75-90.
- Balch, G. I., Mertens, D. M. (1999). Focus Group Design and Group Dynamics: Lessons from Deaf and Hard of Hearing Participants. American Journal of Evaluation, 20(2), 265-277.
- Barbour, R. S., Kitzinger, J. (Eds.). (1999). Developing focus group research : politics, theory, and practice. London : SAGE Publications.
- Baribeau, C. (2009). Analyse des données des entretiens de groupe. Recherches Qualitatives, 28(1), 133-148.
- Baribeau, C., Germain, M. (2010). L’entretien de groupe : considérations théoriques et méthodologiques. Recherches Qualitatives, 29(1), 28-49.
- Barr, O., McConkey, R., McConaghie, J. (2003). Views of people with learning difficulties about current and future accomodation: The use of focus groups to promote discussion. Disability & Society, 18(5), 577-597.
- Becker, H., Roberts, G., Morrison, J., Silver, J. (2004). Recruiting people with disabilities as research participants: challenges and strategies to address them. Mental Retardation, 42(6), 471-475.
- Boland, M., Daly, L., Staines, A. (2008). Methodological issues in inclusive intellectual disability research: A health promotion needs assessment of people attending Irish disability services. Journal of Applied Research in Intellectual Disabilities, 21, 199-209.
- Bollard, M. (2003). Going to the doctor's. The findings from a focus group with people with learning disabilities. Journal of Learning Disabilities, 7(2), 156-164.
- Boucher, C. (2010). Étude descriptive-exploratoire sur la domotique destinée aux personnes présentant une déficience intellectuelle sous l’angle de la sécurité en milieu résidentiel. Mémoire de maîtrise inédit. Université du Québec à Trois-Rivières.
- Boutin, G. (2007). L’entretien de groupe en recherche et formation. Montréal : Éditions Nouvelles.
- Budd, E. C., Sigelman, C. K. K., Sigelman, L. (1981). Exploring the outer Limits of response bias. Sociological Focus, 14(4), 297-307.
- Burgunder, A., Julien-Gauthier, F. (2008). Étude sur les conditions facilitant l’expression des personnes qui présentent une déficience intellectuelle au sujet de leur satisfaction à l’égard des services reçus du centre de réadaptation. Trois-Rivières : Centre de services en déficience intellectuelle et en troubles envahissants du développement de la Mauricie et du Centre-du-Québec Rapport présenté à la direction de la recherche, de l’enseignement et de la qualité (DREQ).
- Cambridge, P., Forrester-Jones, R. (2003). Using individualised communication for interviewing people with intellectual disability: a case study of user-centred research. Journal of Intellectual & Developmental Disabilities, 28(1), 5-23.
- Cambridge, P., McCarthy, M. (2001). Users focus groups and Best Value in services for people with learning disabilities. Health and social in the Community, 9(6), 476-489.
- Carrier, S., Fortin, D. (1994). La valeur des informations recueillies par entrevues structurées et questionnaires auprès des personnes ayant une déficience intellectuelle : une recension des écrits scientifiques. Revue Francophone de la Déficience Intellectuelle, 5(1), 29-41.
- Carter, N., Prater, M. A., Dyches, T. T. (2009). What Every Teacher Should Know About Making Accomodations and Adaptations for Students With Mild to Moderate Disabilities. Upper Saddle River, N.J. : Pearson.
- Chen, X.-L., Tao, J.-T., Hao, H.-T. (2008). The Use of Focus Group Discussion in Studying the Dimensions and the Facets of QOL for People with Disability. Zhong guo xin li wei sheng za zhi, 22(6), 465-468.
- Colucci, E. (2007). « Focus groups can be fun » : The use of activity-oriented questions in focus group discussions. Qualitative Health Research, 17(10), 1422-1433.
- Craig, J., Craig, F., Withers, P., Hatton, C., Limb, K. (2002). Identity conflict in people with intellectual disabilities: What role do service-providers play in mediating stigma?. Journal of Applied Research in Intellectual Disabilities, 15, 61-72.
- Dattilo, J., Hoge, G., Malley, S. (1996). Interviewing people with mental retardation: Validity and reliability strategies. Therapeutic Recreation Journal, 30, 163-178.
- Davila, A., Dominguez, M. (2010). Formats des groupes et types de discussion dans la recherche sociale qualitative. Recherches Qualitatives, 29(1), 50-68.
- Demers, F. (2010). La tentation de la généralisation : Retour réflexif sur cinq focus group. Recherches Qualitatives, 29(1), 110-128.
- Diambra, J. F., McClam, T., Fuss, A., Burton, B., Fudge, D. L. (2009). Using a focus group to analyze student's perceptions of a service-learning project. College Student Journal, 43(1), 114-122.
- Finlay, W. M. L., Lyons, E. (2001). Methodological issues in interviewing and using self-report questionnaires with people with mental retardation. Psychological Assessment, 13(3), 319-335.
- Flynn, M. C. (1986). Adults who are mentally handicapped as consumers: issues and guideliness for interviewing. Journal of Mental Deficiency Research, 30, 369-377.
- Fontana, A., Frey, J. H. (2003). The Interview : From Structured Questions to Negotiated Text. In N. K. Denzin et Y. S. Lincoln (Eds.) Collecting and Interpreting Qualitative Materials (2e ed., pp. 61-106). Thousand Oaks, CA : Sage Publications.
- Fraser, M., Fraser, A. (2001). Are people with learning disabilities able to contribute to focus groups on health promotion?. Journal of Advanced Nursing, 33(2), 225-233.
- Freedman, R. I. (2001). Ethical Challenges in the Conduct of Research Involving Persons With Mental Retardation. Mental retardation, 39(2), 130-141.
- Freeman, K., O’Dell, C., Meola, C. (2001). Focus group methodology for patients, parents, and siblings. Journal of Pediatric Oncology Nursing, 18(6), 276-286.
- Garcia-Iriarte, E., Kramer, J. C., Kramer, J. M., Hammel, J. (2009). "Who did what?": A participatory action research project to increase group capacity for advocacy. Journal of Applied Research in Intellectual Disabilities, 22, 10-22.
- Geoffrion, P. (1997). Le groupe de discussion. In B. Gauthier (Ed.), Recherche sociale : de la problématique à la collecte de données (pp. 311-335). Sainte-Foy : Presses de l’Université du Québec.
- Giard, M.-F., Morin, D. (2010). Le consentement à la recherche en déficience intellectuelle : situation québécoise. Revue Francophone de la Déficience Intellectuelle, 21, 40-53.
- Gibbs, S. M., Brown, M. J., Muir, W. J. (2008). The experiences of adults with intellectual disabilities and their carers in general hospitals: A focus group study. Journal of Intellectual Disability Research, 52(12), 1061-1077.
- Grandisson, M. (2009). Étude des facteurs liés à l’intégration des adolescents ayant une déficience intellectuelle aux sports : promotion de la santé et de la participation sociale. Unpublished Mémoire de maîtrise en santé communautaire, Laval, Québec
- Guillemette, F., Boisvert, D. (2003). L’entrevue de recherche qualitative avec des adultes présentant une déficience intellectuelle. Recherches Qualitatives, 23, 15-26.
- Hampden-Turner, C., Trompenaars, F. (2006). Cultural Intelligence : Is Such a Capacity Credible? Group & Organization Management, 31(1), 56-63.
- Hanson, E. J. (1994). Issues concerning the familiarity of researchers with the research setting. Journal of Advanced Nursing, 20, 940-942.
- Heary, C. M., Hennessy, E. (2002). The use of focus group interviews in pediatric health care research. Society of Pediatric Psychology, 27(1), 47-57.
- Hennink, M. M. (2008). Emerging Issues in International Focus Group Discussion. In S. N. Hesse-Biber et P. Leavy (Eds.), Handbook of emergent methods (pp. 207-220). New-York : Guilford Press.
- Héroux, J., Julien-Gauthier, F., Morin, S. (2011). La tendance à l’acceptation et son impact sur l’intervention psychologique en déficience intellectuelle. Revue Québécoise de Psychologie, 32(1), 43-63.
- Holburn, S., Cea, C. D., Coull, L., Goode, D. (2007). Personal vs. proxy focus groups — perspectives on quality of life. Journal of Policy and Practice in Intellectual Disabilities, 4(3), 210-212.
- Hollander, J. A. (2004). The Social Contexts of Focus Groups. Journal of Contemporary Ethnography, 33(5), 602-637.
- Holzbauer, J., Conrad, C. F. (2010). A Typology of Disability Harassment in Secondary Schools. Career Development for Exceptional Individuals, 33(3), 143-154.
- Houtkoop-Steenstra, H., Antaki, C. (1997). Creating happy people by asking Yes-No questions. Research on Language and Social Interaction, 30(4), 285-313.
- Ionescu, S. (Ed.). (1987). L’intervention en déficience mentale. Manuel de méthodes et de techniques. Volume 1. Problèmes généraux. Méthodes médicales et psychologiques. Bruxelles : Mardaga.
- Jourdan-Ionescu, C., Julien-Gauthier, F. (2011). Clés de résilience en déficience intellectuelle. In S. Ionescu (Ed.), Traité de résilience assistée (pp. 283-325). Paris : Presses Universitaires de France.
- Julien-Gauthier, F., Héroux, J., Jourdan-Ionescu, C. (2010a). La formation des intervieweurs dans la recherche en déficience intellectuelle. Communication présentée au 11e congrès de L’Association internationale de recherche scientifique en faveur des personnes handicapées mentales (AIRHM). Mons (Belgique).
- Julien-Gauthier, F., Héroux, J., Mailhot, S., Jourdan-Ionescu, C., Savoie, J. (2010b). L’utilisation du langage simplifié pour connaître le point de vue des personnes qui ont une déficience intellectuelle. Communication présentée au 78e Congrès de l’Association francophone pour le savoir (ACFAS), Montréal.
- Julien-Gauthier, F., Jourdan-Ionescu, C., Héroux, J. (2009). Favoriser la participation des personnes ayant une déficience intellectuelle lors d’une recherche. Revue Francophone de la Déficience Intellectuelle, 20, 178-188.
- Julien-Gauthier, F., Martin-Roy, S., Boutin, M. (2011). La résilience assistée en déficience intellectuelle. Communication présentée au Dîner thématique du Conseil multidisciplinaire. Québec : Centre de réadaptation en déficience intellectuelle de Québec.
- Kamberelis, G., Dimitriadis, G. (2008). Focus Groups : Strategic articulations of pedagogy, politics, and inquiry. In N. K. Denzin et Y. S. Lincoln (Eds.) Collecting and interpreting qualitative materials (3 ed., pp. 375-402). Thousands Oaks, CA : Sage Publications.
- Kitzinger, J. (1994). The methodology of focus groups: The importance of interaction between research participants. Sociology of Health & Illness, 16(1), 103-121.
- Krueger, R. A., Casey, M. A. (2000). Focus Groups : a practical guide for applied research (3 ed.). Thousands Oaks : Sage Publications.
- Lambert, S. D., Loiselle, C. G. (2008). Combining individual interviews and focus group to enhance data richness. Journal of Advanced Nursing, 62(2), 228-237.
- Leclerc, C., Bourassa, B., Picard, F., Courcy, F. (2011). Du groupe focalisé à la recherche collaborative; avantages, défis et stratégies. Recherches Qualitatives, 29(3), 145-167.
- Lemétayer, F., Gueffier, M. (2007). Évaluation de la qualité de vie des enfants et des adolescents avec une déficience intellectuelle pris en charge dans un institut spécialisé. Revue Francophone de la Déficience Intellectuelle, 17, 65-77.
- Lennox, N., Taylor, M., Rey-Conde, T., Bain, C., Purdie, D. M., Boyle, F. (2005). Beating the barriers: recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research, 49(4), 296-305.
- Lessard, A. (1993). La Gestalt-thérapie et son application auprès des personnes déficientes intellectuelles. Revue Francophone de la Déficience Intellectuelle, 4(1), 69-85.
- Mactavish, J. B., Mahon, M. J., Lutfiyya, Z. M. (2000). "I Can speak for myself": involving individuals with intellectual disabilities as research participants. Mental Retardation, 38(3), 216-227.
- Malik, P. B., Ashton-Shaeffer, C., Kleiber, D. A. (1991). Interviewing young adults with mental retardation: A seldom used research method. Therapeutic Recreation Journal, 25, 60-73.
- McCallion, P., McCarron, M. (2004). Using focus groups to elicit views across disciplines and national experiences with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1(2), 88-94.
- McConkey, R., Sowney, M., Milligan, V., Barr, O. (2004). Views of people with intellectual disabilities of their present and future living arrangements. Journal of Policy and Practice in Intellectual Disabilities, 1(3/4), 115-125.
- Miller, E., Cooper, S.-A., Cook, A., Petch, A. (2008). Outcomes important to people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 5(3), 150-158.
- Mitchell, A., Clegg, J. , Furniss, F. (2006). Exploring the meaning of trauma with adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 19, 131-142.
- Morgan, D. L. (1996). Focus Group. Annual Reviews Sociology, 22, 129-152.
- Morgan, D., Fellows, C., Guevara, H. (2008). Emergent approaches to focus group research. In S. N. Hesse-Biber & P. Leavy (Eds.), Handbook of emergent methods (pp. 198-205). New-York : Guilford Press.
- Moro, G., Cassibba, R., Costantini, A. (2007). Focus groups as an instrument to define evaluation criteria. The case of Foster care. Evaluation, 13(3), 340-357.
- Murphy, J. (2006). Perceptions of communication between people with communication disability and general practice staff. Health Expectations, 9, 49-59.
- Parish, S. L., Moss, K., Richman, E. L. (2008). Perspectives on health care of adults with developmental disabilities. Intellectual and Developmental Disabilities, 46(6), 411-426.
- Patton, M. Q. (2002). Qualitative Research and Evaluation Techniques (3 ed.). Thousand Oaks : Sage Publications.
- Perlman, N. B., Ericson, K. I., Esses, V. M., Isaacs B. J. (1994). The Developmentally handicapped Witness. Competency as a Function of Question Format. Law and Human Behavior, 18(2), 171-187.
- Powell, R. A., Single, H. M., Lloyd, K. R. (1996). Focus Groups in Mental Health Research: Enhancing the Validity of User and Provider Questionnaires. International Journal of Social Psychiatry, 42(3), 193-206.
- Rogers, J. (2005). Making information easier for people with learning disabilities. British Journal of Learning Disabilities, 33, 52-58.
- Ruef, M. B., Turnbull, A. P. (2002). The Perspectives of Individuals with Cognitive Disabilities and/or Autism on Their Lives and Their Problem Behavior. Research & Practice for Persons with Severe Disabilities, 27(2), 125-140.
- Ruel, J., Kassi, B., Moreau, A. C., Mbida-Mballa, S. L. (2011). Guide de rédaction pour une information accessible. Gatineau : Pavillon du Parc.
- Ruel, J., Moreau, A., Bourdeau, L., Lehoux, N. (Producer). (2008) Carte routière vers le préscolaire : guide pour soutenir une transition de qualité des enfants ayant des besoins particuliers. Gatineau : GRECIP — Groupe de recherche en éducation des communautés inclusives au préscolaire. Université du Québec en Outaouais.
- Seltzer, M. M. (1984). Patterns of job satisfaction among mentally retarded adults. Applied Research in Mental Retardation, 5, 147-159.
- Sigelman, C. K., Schoenrock, C. J., Budd, E. C., Winer, J. L., Spanhel, C. L., Martin, P. W. (1983). Communicating with mentally retarded persons: asking questions and getting answers. Texas : Texas Tech Press.
- Sigelman, C. K., Budd, E. C., Spanhel, C. L., Schoenrock, C. J. (1981a). When in doubt, say Yes: Acquiescence in interviews with mentally retarded persons. Mental Retardation, 53-58.
- Sigelman, C. K., Budd, E. C., Spanhel, C. L., Schoenrock, C. J. (1981b). Asking Questions of Retarded Persons: A Comparison of Yes-No and Either-Or Formats. Applied Research in Mental Retardation, 347-357.
- Temple, V. A., Walkley, J. W. (2007). Perspectives of constraining and enabling factors for health-promoting physical activity by adults with intellectual disability. Journal of Intellectual & Developmental Disabilities, 32(1), 28-38.
- Valiquette, C., Sutton, A., Ska, B. (2010). A graphic symbol tool for the evaluation of communication, satisfaction and priorities of individuals with intellectual disability who use a speech generating device. Child Language Teaching and Therapy, 26(3), 303-319.
- Van Eyk, H., Baum, F. (2003). Evaluating health system change - using focus groups and a developing discussion paper to compile the «voices from the field». Qualitative Health Research, 13(2), 281-286.
- Watkins, J., Espie, C. A., Curtice, L., Mantala, K., Corp, A., Foley, J. (2006). Development of a measure to assess the impact of epilepsy on people with an intellectual disability: The Glasgow Epilepsy outcome scale — client version (GEOS-C). Journal of Intellectual Disabilities Research, 50(3), 161-171.
- Wyatt, T. H., Krauskopf, P. B., Davidson, R. (2008). Using focus group for program planning and evaluation. The Journal of School Nursing, 24(2), 71-77.
- Wyngaarden, M. (1981). Interviewing mentally retarded persons: Issues and strategies. In C. E. R. H. Bruininks Meyers, Sigford, B. B., Lakin, K. C. (Ed.), Deinstitutionalization and Community Adjustment of Mentally (pp. 107-113). Washington : American Association on Mental Deficiency.
- Zazzo, R. (1979). Préface à la troisième édition : savoir ce que parler veut dire en matière de débilité mentale. In R. Zazzo (Ed.), Les débilités mentales. Paris : A. Colin.