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Original Article

Using individualised communication for interviewing people with intellectual disability: a case study of user-centred research

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Pages 5-23 | Published online: 10 Jul 2009

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Read on this site (10)

Gillian Cox, Lauren J. Breen & Naomi Cocks. (2023) Being practically, professionally and personally prepared: Supporting people with intellectual disability and dysphagia to eat and drink outside the home. International Journal of Speech-Language Pathology 25:2, pages 256-268.
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Akram Khayatzadeh-Mahani, Krystle Wittevrongel, David B. Nicholas & Jennifer D. Zwicker. (2020) Prioritizing barriers and solutions to improve employment for persons with developmental disabilities. Disability and Rehabilitation 42:19, pages 2696-2706.
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Charmaine Agius Ferrante & Eileen Oak. (2020) ‘No sex please!’ We have been labelled intellectually disabled. Sex Education 20:4, pages 383-397.
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Louise Norman Jespersen, Susan Ishøy Michelsen, Tine Tjørnhøj-Thomsen, Marie Kofod Svensson, Bjørn Evald Holstein & Pernille Due. (2019) Living with a disability: a qualitative study of associations between social relations, social participation and quality of life. Disability and Rehabilitation 41:11, pages 1275-1286.
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Juan Bornman & Diane Nelson Bryen. (2013) Social Validation of Vocabulary Selection: Ensuring Stakeholder Relevance. Augmentative and Alternative Communication 29:2, pages 174-181.
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Carolus van Nijnatten & Marianne Heestermans. (2012) Communicative empowerment of people with intellectual disability. Journal of Intellectual & Developmental Disability 37:2, pages 100-111.
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Paul Cambridge & Tessa Parkes. (2004) Good enough decision‐making? Improving decision‐making in adult protection. Social Work Education 23:6, pages 711-729.
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Marianne Holmgren & Gerd Ahlström. (2023) Good life in old age: Qualitative interviews about ageing with older adults with mild intellectual disability, prior to an educational intervention. Journal of Intellectual Disabilities.
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Suzanne Igier & Pennequin Valérie. (2022) The role of familiarity with the experimenter on cognitive performance, metacognition, pro-social behaviors, and the well-being of adults with moderate to severe intellectual disabilities. Journal of Intellectual Disabilities 27:2, pages 404-418.
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Niall McGrane, Paul Dunbar & Laura M. Keyes. (2023) To summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary research with a vulnerable, hard to reach population during the COVID-19 pandemic. Research Involvement and Engagement 9:1.
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Jesse G. Strickler & Susan M. Havercamp. (2023) Evaluating an informed consent process designed to improve inclusion of adults with intellectual disability in research. Research in Developmental Disabilities 134, pages 104413.
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Rachel Forrester-Jones, Jennifer Beecham, Amy Randall, Rachel Harrison, Melina Malli, Lara Sams & Glynis Murphy. (2021) The Impact of Austerity Measures on People with Intellectual Disabilities in England. Journal of Long Term Care, pages 241-255.
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May Østby, Hege Bakken, Ole Magnus Oterhals & Karl Elling Ellingsen. (2021) Jeg kan!. Tidsskrift for omsorgsforskning 7:1, pages 1-23.
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Petko Atanasov Karadechev, Anne Marie Kanstrup & Jacob Gorm Davidsen. 2021. Human-Computer Interaction – INTERACT 2021. Human-Computer Interaction – INTERACT 2021 170 191 .
Judy Verseghy, Lynda Atack & Janet Maher. (2020) Key considerations when interviewing individuals with expressive language difficulties. Qualitative Research 20:6, pages 960-970.
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Sarah M. Hart, Mikayla Pascucci, Sheetal Sood & Emily M. Barrett. (2020) Value, vulnerability and voice: An integrative review on research assent. British Journal of Learning Disabilities 48:2, pages 154-161.
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Linn Ebeltoft Sparby, Nina Olsvold & Aud Obstfelder. (2020) Mediating the interface between voluntariness and coercion: A qualitative study of learning disability nurses’ work in medical examinations of people with intellectual disability. Journal of Clinical Nursing 29:9-10, pages 1539-1551.
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Amanda Bates, Rachel Forrester‐Jones & Michelle McCarthy. (2019) Specialist hospital treatment and care as reported by children with intellectual disabilities and a cleft lip and/or palate, their parents and healthcare professionals. Journal of Applied Research in Intellectual Disabilities 33:2, pages 283-295.
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Romain Delgrange, Jean-Marie Burkhardt & Valérie Gyselinck. (2020) Difficulties and Problem-Solving Strategies in Wayfinding Among Adults With Cognitive Disabilities: A Look at the Bigger Picture. Frontiers in Human Neuroscience 14.
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Danielle Ashley, Ellie Fossey & Christine Bigby. (2019) The home environments and occupational engagement of people with intellectual disabilities in supported living. British Journal of Occupational Therapy 82:11, pages 698-709.
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Kumaresan Cithambaram, Mel Duffy & Eileen Courtney. (2018) End‐of‐life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context. British Journal of Learning Disabilities 47:2, pages 70-76.
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Sandra Schütz, Folke Brodersen, Sandra Ebner & Nora Gaupp. 2019. Qualitätssicherung sozialwissenschaftlicher Erhebungsinstrumente. Qualitätssicherung sozialwissenschaftlicher Erhebungsinstrumente 371 406 .
Louise Norman Jespersen, Susan Ishøy Michelsen, Bjørn Evald Holstein, Tine Tjørnhøj-Thomsen & Pernille Due. (2018) Conceptualization, operationalization, and content validity of the EQOL-questionnaire measuring quality of life and participation for persons with disabilities. Health and Quality of Life Outcomes 16:1.
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Nicki Thorp, Jacqui Stedmon & Helen Lloyd. (2018) “I carry her in my heart”: An exploration of the experience of bereavement for people with learning disability. British Journal of Learning Disabilities 46:1, pages 45-53.
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Rebecca Monteleone & Rachel Forrester-Jones. (2017) ‘Disability Means, um, Dysfunctioning People’: A Qualitative Analysis of the Meaning and Experience of Disability among Adults with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities 30:2, pages 301-315.
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Cath Larkins, Nigel Thomas, Bernie Carter, Nicola Farrelly, Dawn Judd & Jane Lloyd. (2015) Support for Children’s Protagonism. The International Journal of Children’s Rights 23:2, pages 332-364.
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Rosemary Tozer, Karl Atkin & Aniela Wenham. (2014) ‘My brother likes meeting new people, but don't ask him any direct questions’: involving adults with autism plus learning disability in a qualitative research project. British Journal of Learning Disabilities 42:4, pages 292-300.
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Carly Smith & Rachel Forrester-Jones. (2014) Experiential learning: changing student attitudes towards learning disability. Tizard Learning Disability Review 19:3, pages 110-117.
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Katherine E. McDonaldDora M. Raymaker. (2013) Paradigm Shifts in Disability and Health: Toward More Ethical Public Health Research. American Journal of Public Health 103:12, pages 2165-2173.
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Goetz Ottmann & Jenny Crosbie. (2013) Mixed method approaches in open-ended, qualitative, exploratory research involving people with intellectual disabilities. Journal of Intellectual Disabilities 17:3, pages 182-197.
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Daisy Loyd. (2012) Obtaining consent from young people with autism to participate in research. British Journal of Learning Disabilities 41:2, pages 133-140.
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A.E. van Asselt-Goverts, P.J.C.M. Embregts & A.H.C. Hendriks. (2013) Structural and functional characteristics of the social networks of people with mild intellectual disabilities. Research in Developmental Disabilities 34:4, pages 1280-1288.
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Francine Julien-Gauthier, Jessy Héroux, Julie Ruel & André Moreau. (2014) L’utilisation de « groupes de discussion » dans la recherche en déficience intellectuelle. Revue francophone de la déficience intellectuelle 24, pages 75-95.
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Katherine E. McDonald & Colleen A. Kidney. (2012) What Is Right? Ethics in Intellectual Disabilities Research. Journal of Policy and Practice in Intellectual Disabilities 9:1, pages 27-39.
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Elizabeth Morrow, Annette Boaz, Sally Brearley & Fiona Ross. 2011. Handbook of Service User Involvement in Nursing and Healthcare Research. Handbook of Service User Involvement in Nursing and Healthcare Research 106 119 .
Kathy Boxall & Sue Ralph. (2011) Research ethics committees and the benefits of involving people with profound and multiple learning disabilities in research. British Journal of Learning Disabilities 39:3, pages 173-180.
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Alice R. Mathers, Kevin Thwaites, Ian M. Simkins & Rebecca Mallett. (2022) Beyond Participation: the Practical Application of an Empowerment Process to Bring about Environmental and Social Change. Développement Humain, Handicap et Changement Social 19:3, pages 37-57.
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Ingrid Müller, Margret Buchholz & Ulrika Ferm. (2010) Text messaging with picture symbols ‐ experiences of seven persons with cognitive and communicative disabilities. Journal of Assistive Technologies 4:4, pages 11-23.
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Christine ValiquetteAnn Sutton & Bernadette Ska. (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, pages 303-319.
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Katherine E. McDonald, Colleen A. Kidney, Sandra L. Nelms, Michael R. Parker, Ali Kimmel & Christopher B. Keys. (2009) Including Adults With Intellectual Disabilities in Research: Scientists' Perceptions of Risks and Protections. Journal of Policy and Practice in Intellectual Disabilities 6:4, pages 244-252.
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Dorothy M. Bell & Lois Cameron. (2007) From Dare I say … ? to I dare say : a case example illustrating the extension of the use of Talking Mats to people with learning disabilities who are able to speak well but unwilling to do so . British Journal of Learning Disabilities 36:2, pages 122-127.
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Elizabeth Smith, Fiona Ross, Sheila Donovan, Jill Manthorpe, Sally Brearley, John Sitzia & Peter Beresford. (2008) Service user involvement in nursing, midwifery and health visiting research: A review of evidence and practice. International Journal of Nursing Studies 45:2, pages 298-315.
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Chris SherrattTony SoteriouSimon Evans. (2016) Ethical issues in social research involving people with dementia. Dementia 6:4, pages 463-479.
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Lois Cameron & Joan Murphy. (2007) Obtaining consent to participate in research: the issues involved in including people with a range of learning and communication disabilities. British Journal of Learning Disabilities 35:2, pages 113-120.
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Rachel Forrester-Jones, John Carpenter, Pauline Coolen-Schrijner, Paul Cambridge, Alison Tate, Jennifer Beecham, Angela Hallam, Martin Knapp & David Wooff. (2006) The Social Networks of People with Intellectual Disability Living in the Community 12 Years after Resettlement from Long-Stay Hospitals. Journal of Applied Research in Intellectual Disabilities 19:4, pages 285-295.
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Stephanie Brewster. (2016) Book Review: Listening to Children 2004. Child Language Teaching and Therapy 22:2, pages 241-243.
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Rachel Forrester-Jones. (2016) Reflections on a Young Offenders Institution. International Journal of Offender Therapy and Comparative Criminology 50:2, pages 218-231.
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Edward J. Sabornie. 2006. Applications of Research Methodology. Applications of Research Methodology 1 32 .
Rachel Forrester-Jones, John Carpenter, Pauline Coolen-Schrijner, Paul Cambridge, Alison Tate, Jennifer Beecham, Angela Hallam, Martin Knapp & David Wooff. (2005) The Social Networks of People with Intellectual Disability Living in the Community 12 Years after Resettlement from Long-Stay Hospitals. Journal of Applied Research in Intellectual Disabilities 0:0, pages 050926023340005.
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Anthony J. Goreczny, Bree Miller, Brenda Dunmire & Geoffrey J. Tolge. (2005) Inter-rater reliability of the Pennsylvania independent monitoring for quality program's essential data elements scale. Research in Developmental Disabilities 26:3, pages 231-241.
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Stephanie J. Brewster. (2004) Putting words into their mouths? Interviewing people with learning disabilities and little/no speech. British Journal of Learning Disabilities 32:4, pages 166-169.
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Dorothy M. Bell & Lois Cameron. (2003) The assessment of the sexual knowledge of a person with a severe learning disability and a severe communication disorder. British Journal of Learning Disabilities 31:3, pages 123-129.
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