Emergent analysis and dissemination within participatory research

References

• Aldridge, J. 2007. “Picture This: The Use of Participatory Photographic Research Methods with People with Learning Disabilities.” Disability and Society 22 (1): 1–17.
   Web of Science ®Google Scholar
• Aldridge, J. 2016. Participatory Research: Working with Vulnerable Groups in Research and Practice. Bristol: Policy Press.
   Google Scholar
• Barnes, C. 2003. “What Difference a Decade Makes: Reflections on Doing ‘Emancipatory’ Disability Research.” Disability and Society 18 (1): 3–17.
   Web of Science ®Google Scholar
• Bigby, C., and P. Frawley. 2010. “Reflections on Doing Inclusive Research in the “Making Life Good in the Community” Study.” Journal of Intellectual and Developmental Disability 35 (2): 53–56.
   PubMed Web of Science ®Google Scholar
• Bigby, C., P. Frawley, and P. Ramcharan. 2014. “A Collaborative Group Method of Inclusive Research.” Journal of Applied Research in Intellectual Disabilities 27 (1): 54–64.
   PubMed Web of Science ®Google Scholar
• Brooks, M., S. Davies, and E. Twigg. 2013. “A Measure for Feelings – Using Inclusive Research to Develop a Tool for Evaluating Psychological Therapy (Clinical Outcomes in Routine Evaluation – Learning Disability).” British Journal of Learning Disabilities 41 (4): 320–329.
   Web of Science ®Google Scholar
• Carr, W., and S. Kemmis. 1986. Becoming Critical: Education, Knowledge and Action Research. Lewes: Falmer Press.
   Google Scholar
• Chin, N. P., J. Cuculick, M. Starr, T. Panko, H. Widanka, and A. Dozier. 2013. “Deaf Mothers and Breastfeeding: Do Unique Features of Deaf Culture and Language Support Breastfeeding Success?” Journal of Human Lactation 29 (4): 564–571.
   PubMed Web of Science ®Google Scholar
• Cluley, V. 2017. “Using Photovoice to Include People with Profound and Multiple Learning Disabilities in Inclusive Research.” British Journal of Learning Disabilities 45 (1): 39–46.
   Web of Science ®Google Scholar
• Cocks, E., and J. Cockram. 1995. “The Participatory Research Paradigm and Intellectual Disability.” Mental Handicap Research 8 (1): 25–37.
   Google Scholar
• Comstock, D. 1982. “A Method for Critical Research.” In Knowledge and Values in Educational Research, edited by E. Bredo and W. Fienburg, 370–390. Philadelphia: Temple University Press.
   Google Scholar
• Conder, J., P. Milner, and B. Mirfin-Veitch. 2011. “Reflections on a Participatory Project: The Rewards and Challenges for the Lead Researchers.” Journal of Intellectual and Developmental Disability 36 (1): 39–48.
   PubMed Web of Science ®Google Scholar
• Cook, T., and P. Inglis. 2012. “Participatory Research with Men with Learning Disability: Informed Consent.” Tizard Learning Disability Review 17 (2): 92–101.
   Google Scholar
• Dias, J., M. Eardley, E. Harkness, L. Townson, C. Brownlee-Chapman, and R. Chapman. 2012. “Keeping Wartime Memory Alive: An Oral History Project About the Wartime Memories of People with Learning Difficulties in Cumbria.” Disability and Society 27 (1): 31–49.
   Web of Science ®Google Scholar
• Draffan, E. A., A. James, M. Wald, and A. Idris. 2016. “Framework for Selecting Assistive Technology User-Participation Methods.” Journal of Assistive Technologies 10 (2): 92–101.
   Google Scholar
• Erdtman, E., M. Tideman, C. Fleetwood, and K. Moller. 2012. “Research Initiation Based on Idea-Circles: From Research Object to Co-Actor.” Disability and Society 27 (6): 879–882.
   Web of Science ®Google Scholar
• Flood, S., D. Bennett, M. Melsome, and R. Northway. 2013. “Becoming a Researcher.” British Journal of Learning Disabilities 41 (4): 288–295.
   Web of Science ®Google Scholar
• French, S. 1993. Practical Research: A Guide for Therapists. Oxford: Butterworth-Heinmann.
   Google Scholar
• Fudge Schormans, A. 2014. “‘Weightless?’: Disrupting Relations of Power in/Through Photographic Imagery of Persons with Intellectual Disabilities.” Disability & Society 29 (5): 699–713.
   Web of Science ®Google Scholar
• Garcia-Iriarte, E., J. C. Kramer, J. M. Kramer, and J. Hammel. 2009. “‘Who Did What?’: A Participatory Action Research Project to Increase Group Capacity for Advocacy.” Journal of Applied Research in Intellectual Disabilities 22 (1): 10–22.
   Web of Science ®Google Scholar
• Garcia Carrizosa, H., J. Diaz, R. Krall, and F. Sisinni Ganly. 2019a. “Cultural Differences in ARCHES: A European Participatory Research Project – Working with Mixed Access Preferences in Different Cultural Heritage Sites.” The International Journal of the Inclusive Museum 12 (3): 33–50.
   Google Scholar
• Garcia Carrizosa, H., J. Diaz, and F. Sisinni. 2019b. Towards a Participatory Museum. https://www.arches-project.eu/wp-content/uploads/2019/07/EnglishGuide_Hyperlinks_mid.pdf.
   Google Scholar
• Gates, B., and M. Waight. 2007. “Reflections on Conducting Focus Groups with People with Learning Disabilities: Theoretical and Practical Issues.” Journal of Research in Nursing 12 (2): 111–126.
   Google Scholar
• Greenstein, A. 2014. “Today’s Learning Objective is to Have a Party: Playing Research with Students in a Secondary School Special Needs Unit.” Journal of Research in Special Educational Needs 14 (2): 71–81.
   Google Scholar
• Grundy, A. L., M. K. McGinn, and D. E. Pollon. 2005. “Striving Toward Inclusive Research Practices: The Evolution of the Participant-as-Transcriptionist Method.” Disability and Society 20 (4): 453–468.
   Web of Science ®Google Scholar
• Haak, M., B. Slaug, F. Oswald, S. M. Schmidt, J. M. Rimland, S. Tomsone, T. Lad, T. Svensson, and S. Iwarsson. 2015. “Cross-National User Priorities for Housing Provision and Accessibility, Findings From the European Innovage Project.” International Journal of Environmental Research and Public Health 12 (3): 2670–2686.
   PubMed Web of Science ®Google Scholar
• Haigh, A., D. Lee, C. Shaw, M. Hawthorne, S. Chamberlain, D. W. Newman, Z. Clarke, and N. Beail. 2013. “What Things Make People with a Learning Disability Happy and Satisfied with Their Lives: An Inclusive Research Project.” Journal of Applied Research in Intellectual Disabilities 26 (1): 26–33.
   PubMed Web of Science ®Google Scholar
• Hall, B. 1981. “The Democratisation of Research in Adult and Non-Formal Education.” In Human Inquiry, edited by P. Reason, and J. Rowan, 447–456. New York: John Wiley & Sons.
   Google Scholar
• Hammersley, M. 2000. “Varieties of Social Research: A Typology.” International Journal of Social Research Methodology 3 (3): 221–229.
   Google Scholar
• Heidegger, M. 1996. Being and Time: A Translation of Sein und Zeit. New York: SUNY Press.
   Google Scholar
• Herron, D., H. Priest, and S. Read. 2015. “Working Alongside Older People with a Learning Disability: Informing and Shaping Research Design.” British Journal of Learning Disabilities 43 (4): 261–226.
   Web of Science ®Google Scholar
• Higginbottom, G. M., K. Rivers, and R. Story. 2014. “Health and Social Care Needs of Somali Refugees With Visual Impairment (VIP) Living in the United Kingdom: A Focused Ethnography With Somali People With VIP, Their Caregivers, Service Providers, and Members of the Horn of Africa Blind Society.” Journal of Transcultural Nursing 25 (2): 192–201.
   PubMed Web of Science ®Google Scholar
• Hodges, C. E. M., L.-A. Fenge, and W. Cutts. 2014. “Challenging Perceptions of Disability Through Performance Poetry Methods: The ‘Seen but Seldom Heard’ Project.” Disability and Society 29 (7): 1090–1103.
   Web of Science ®Google Scholar
• International Collaboration for Participatory Health Research [ICPHR]. 2013. What is Participatory Health Research: Position Paper 1. Accessed July 29, 2019. http://www.icphr.org/uploads/2/0/3/9/20399575/ichpr_position_paper_1_defintion_-_version_may_2013.pdf.
   Google Scholar
• Keyes, S. E., and T. Brandon. 2012. “Mutual Support: A Model of Participatory Support by and for People with Learning Difficulties.” British Journal of Learning Disabilities 40 (3): 222–228.
   Web of Science ®Google Scholar
• Koenig, O. 2012. “Any Added Value? Co-Constructing Life Stories of and with People with Intellectual Disabilities.” British Journal of Learning Disabilities 40 (3): 213–221.
   Web of Science ®Google Scholar
• Kramer, J., Y. Barth, K. Curtis, K. Livingston, M. O’Neil, Z. Smith, S. Vallier, and A. Wolfe. 2013. “Involving Youth with Disabilities in the Development and Evaluation of a New Advocacy Training: Project TEAM.” Disability & Rehabilitation 35 (7): 614–622.
   PubMed Web of Science ®Google Scholar
• Kramer, J. M., J. C. Kramer, E. Garcia-Iriarte, and J. Hammel. 2011. “Following Through to the End: The Use of Inclusive Strategies to Analyse and Interpret Data in Participatory Action Research with Individuals with Intellectual Disabilities.” Journal of Applied Research in Intellectual Disabilities 24 (3): 263–273.
   Web of Science ®Google Scholar
• Lather, P. 1986. “Research as Praxis.” Harvard Education Research 56 (3): 257–271.
   Web of Science ®Google Scholar
• Lutz, D., K. R. Fisher, and S. Robinson. 2016. “Sharing the Focus: Engaging with Support Workers to Include People with Communication Needs in Research.” British Journal of Learning Disabilities 44 (2): 138–145.
   Web of Science ®Google Scholar
• MacDonald, D. 2016. “Creative Ways of Talking: A Narrative Literature Review Concerning Emotional Support for Adults with Mild or Moderate Learning Difficulties.” British Journal of Learning Disabilities 44 (3): 233–239.
   Web of Science ®Google Scholar
• Malling, S. H. 2013. “Choreography and Performance with Deaf Adults Who Have Mental Illness: Culturally Affirmative Participatory Research.” American Journal of Dance Therapy 35 (2): 118–141.
   Google Scholar
• McKee, M., D. Thew, M. Starr, P. Kushalnagar, J. T. Reid, P. Graybill, J. Velasquez, and T. Pearson. 2012. “Engaging the Deaf American Sign Language Community: Lessons From a Community-Based Participatory Research Center.” Progress Community Health Partnership 6 (3): 321–329.
   PubMedGoogle Scholar
• Morgan, M., K. Moni, and M. Cuskelly. 2013. “Literacy Strategies Used by Adults with Intellectual Disability in Negotiating Their Everyday Community Environments.” Australian Journal of Adult Learning 53 (3): 411–435.
   Web of Science ®Google Scholar
• Nicholls, R. 2009. “Research and Indigenous Participation: Critical Reflexive Methods.” International Journal of Social Research Methodology 12 (2): 117–126.
   Web of Science ®Google Scholar
• Nicolaidis, C., D. Raymaker, M. Katz, M. Oschwald, R. Goe, S. Leotti, L. Grantham, et al. 2015. “The Partnering With People With Disabilities to Address Violence Consortium Community-Based Participatory Research to Adapt Health Measures for Use by People with Developmental Disabilities.” Rural Institute Journal 9 (2): 157–170.
   Google Scholar
• Nind, M. 2008. Conducting Qualitative Research with People with Learning, Communication and Other Disabilities: Methodological Challenges. Southampton: National Centre for Research Methods.
   Google Scholar
• Nind, M. 2011. “Participatory Data Analysis: A Step Too Far?” Qualitative Research 11 (4): 349–363.
   Web of Science ®Google Scholar
• Nind, M., R. Chapman, J. Seale, and L. Tilley. 2016. “The Conundrum of Training and Capacity Building for People with Learning Disabilities Doing Research.” Journal of Applied Research in Intellectual Disabilities 29 (6): 542–551.
   PubMed Web of Science ®Google Scholar
• Nind, M., and H. Vinha. 2014. “Doing Research Inclusively: Bridges to Multiple Possibilities in Inclusive Research.” British Journal of Learning Disabilities 42 (2): 102–109.
   Web of Science ®Google Scholar
• Nind, M., and H. Vinha. 2016. “Creative Interactions with Data: Using Visual and Metaphorical Devices in Repeated Focus Groups.” Qualitative Research 16 (1): 9–26.
   PubMed Web of Science ®Google Scholar
• Noell, J. F., M. P. Diaz, M. V. Sune, and C. P. Rovira. 2016. “People with Intellectual Disabilities as Researchers. Discussions, Challenges and Possibilities of Inclusive Research [Las personas con discapacidad intelectual como investigadoras., retos y posibilidades de la investigacion inclusiva].” Empiria – Revista de Metodología de Ciencias Sociales 33: 111–138.
   Google Scholar
• Northway, R., K. Hurley, C. O’Connor, H. Thomas, J. Howarth, E. Langley, and S. Bale. 2014. “Deciding What to Research: An Overview of a Participatory Workshop.” British Journal of Learning Disabilities 42 (4): 323–327.
   Web of Science ®Google Scholar
• O’Brien, P., R. Mcconkey, and E. Garcia-Iriarte. 2014. “Co-researching with People Who Have Intellectual Disabilities: Insights From a National Survey.” Journal of Applied Research in Intellectual Disabilities 27 (1): 65–75.
   PubMed Web of Science ®Google Scholar
• Povee, K., B. J. Bishop, and L. D. Roberts. 2014. “The Use of Photovoice with People with Intellectual Disabilities: Reflections, Challenges and Opportunities.” Disability and Society 29 (6): 893–907.
   Web of Science ®Google Scholar
• Raymond, E., and A. Grenier. 2015. “Social Participation at the Intersection of Old Age and Lifelong Disability: Illustrations From a Photo-Novel Project.” Journal of Aging Studies 35: 190–200.
   PubMed Web of Science ®Google Scholar
• Richardson, M. 1997. “Participatory Research Methods: People with Learning Difficulties.” British Journal of Nursing 6 (10): 1114–1121.
   PubMedGoogle Scholar
• Richardson, M. 2002. “Involving People in the Analysis: Listening, Reflecting, Discounting Nothing.” Journal of Learning Disabilities 6 (1): 47–60.
   Google Scholar
• Rix, J., H. Garcia-Carrisoza, J. Seale, K. Sheehy, and S. Hayhoe. 2019. “The While of Participation: A Systematic Review of Participatory Research Involving People with Sensory and Intellectual Impairments.” Disability and Society. doi:10.1080/09687599.2019.1669431.
   PubMed Web of Science ®Google Scholar
• Rix, J., T. Lowe, M. Heard, D. Harwood, C. Bingham, M. Anderson, R. Bemtham, et al. 2010. “Including People with Learning Difficulties in Cultural and Heritage Sites.” International Journal of Heritage Studies 16 (3): 207–224.
   Web of Science ®Google Scholar
• Rogers, C., and S. Tuckwell. 2016. “Co-constructed Caring Research and Intellectual Disability: An Exploration of Friendship and Intimacy in Being Human.” Sexualities 19 (5–6): 623–640.
   Web of Science ®Google Scholar
• Rome, A., J. Hardy, J. Richardson, and F. Shenton. 2015. “Exploring Transitions with Disabled Young People: Our Experiences, Our Rights and Our Views.” Child Care in Practice 1 (3): 287–294.
   Google Scholar
• Schleien, S., L. Brake, K. Miller, and G. Walton. 2013. “Using Photovoice to Listen to Adults with Intellectual Disabilities on Being Part of the Community.” Annals of Leisure Research 16 (3): 212–229.
   Google Scholar
• Schön, D. 1983. The Reflective Practitioner: How Professionals Think in Action. London: Maurice Temple Smith.
   Google Scholar
• Seale, J., H. Garcia Carrizosa, J. Rix, K. Sheehy, and S. Hayhoe. 2019. “A Participatory Approach to the Evaluation of Participatory Museum Research Projects.” International Journal of Research and Method in Education 1–12. doi:10.1080/1743727X.2019.1706468.
   Web of Science ®Google Scholar
• Seale, J., M. Nind, L. Tilley, and R. Chapman. 2015. “Negotiating a Third Space for Participatory Research with People with Learning Disabilities: An Examination of Boundaries and Spatial Practices.” Innovation: The European Journal of Social Science Research 28 (4): 483–497.
   Web of Science ®Google Scholar
• Shakespeare, P. 1993. “Performing.” In Reflecting on Research Practice, edited by P. Shakespeare, D. Atkinson, and S. French, 95–105. Milton Keynes: Open University Press.
   Google Scholar
• Simmons, B., and D. Watson. 2015. “From Individualism to Co-Construction and Back Again: Rethinking Research Methodology for Children with Profound and Multiple Learning Disabilities.” Child Care in Practice 21 (1): 50–66.
   Google Scholar
• Stack, E., and K. McDonald. 2014. “Nothing About Us Without Us: Does Action Research in Developmental Disabilities Research Measure Up?” Journal of Policy and Practice in Intellectual Disabilities 11 (2): 83–91.
   Web of Science ®Google Scholar
• Star, S. 2010. “This is Not a Boundary Object: Reflections on the Origins of a Concept.” Science, Technology, & Human Values 35 (5): 601–617.
   Web of Science ®Google Scholar
• Star, S., and J. Griesemer. 1989. “Institutional Ecology, “Translations” and Boundary Objects: Amateurs and Professionals in Berkeley’s Museum of Vertebrate Zoology.” Social Studies of Science 19 (3): 387–420.
   Web of Science ®Google Scholar
• Stevenson, M. 2014. “Participatory Data Analysis Alongside Co-Researchers Who Have Down Syndrome.” Journal of Applied Research in Intellectual Disabilities 27 (1): 23–33.
   PubMed Web of Science ®Google Scholar
• Strauss, A., and J. Corbin. 1998. Basics of Qualitative Research; Techniques and Procedures for Developing Grounded Theory. Thousand Oaks, CA: Sage Publications.
   Google Scholar
• Strnadovva, I., T. Cumming, M. Knox, and T. Parmenter. 2014. “Building an Inclusive Research Team: The Importance of Team Building and Skills Training.” Journal of Applied Research in Intellectual Disabilities 27 (1): 13–22.
   PubMed Web of Science ®Google Scholar
• Swain, J. 1995. “Constructing Participatory Research: in Principle and in Practice.” In Making Difficulties: Research and the Construction of Special Educational Needs, edited by P. Clough and L. Barton, 75–93. London: Paul Chapman.
   Google Scholar
• Tarleton, B., and L. Ward. 2005. “Changes and Choices: Finding Out What Information Young People with Learning Disabilities, Their Parents and Supporters Need at Transition.” British Journal of Learning Disabilities 33 (2): 70–76.
   Google Scholar
• Tilly, L. 2013. “I Ain’t Been Bothered to Go: Managing Health Problems in People with a Learning Disability Who Live Without Support.” Diversity and Equality in Health and Care 10 (4): 223–230.
   Google Scholar
• Walmsley, J. 2014. “Telling the History of Self-Advocacy: A Challenge for Inclusive Research.” Journal of Applied Research in Intellectual Disabilities 27 (1): 34–43.
   PubMed Web of Science ®Google Scholar
• Walmsley, J., and K. Johnson. 2003. Inclusive Research with People with Learning Difficulties. Past, Present and Future. London: Jessica Kingsley.
   Google Scholar
• Watson, D., A. Feiler, and B. Tarleton. 2014. “Involving Young Disabled People in the Research Process: The Experiences of the PIE Research Project Team.” Children and Society 28 (4): 316–326.
   Web of Science ®Google Scholar
• Whyte, W., D. Greenwood, and P. Lazes. 1989. “Participatory Action Research: Through Practice to Science in Social Research.” American Behavioral Scientist 32 (5): 513–551.
   Web of Science ®Google Scholar
• Wickenden, M., and G. Kembhavi-Tam. 2014. “Ask us Too! Doing Participatory Research with Disabled Children in the Global South.” Childhood 21 (3): 400–417.
   Web of Science ®Google Scholar
• Williams, V., and K. Simons. 2005. “More Researching Together: The Role of Nondisabled Researchers in Working with People First Members.” British Journal of Learning Disabilities 33 (1): 6–14.
   Google Scholar
• Young, A. F., and R. A. Chesson. 2008. “Determining Research Questions on Health Risks by People with Learning Disabilities, Carers and Care-Workers.” British Journal of Learning Disabilities 36 (1): 22–31.
   Google Scholar