The engagement of children with disabilities in health-related technology design processes: Identifying methodology

References

• Bridgelal Ram M, Grocott P, Weir H. Issues and challenges of involving users in medical device development. Health Expectations 2007;11:63–71.
   Web of Science ®Google Scholar
• Lightfoot J, Sloper P. Having a say in health: Guidelines for involving young patients in health services development, Social Policy Research Unit 2002. York: University of York; 2002.
   Google Scholar
• Shah S, Robinson I. Benefits of and barriers to involving users in medical device technology development and evaluation. Int J Technol Assess Health Care 2007;23:131–137.
   PubMed Web of Science ®Google Scholar
• Hogg C. Patient and public involvement: What next for the NHS? Health Expect 2006;10:129–138.
   Web of Science ®Google Scholar
• Lamey B, Bristow C. The design of a mental healthcare low secure unit: The meaningful involvement of service user in the design process. Proceedings of INCLUDE, 2007. Electronic Citation. http://www.hhc.rca.ac.uk/kt/include/2007/proceedings/paper.php?ID=1_141 via the Internet. Last accessed September 2008.
   Google Scholar
• Beresford B, Rabiee P, Sloper P. Priorities and perceptions of disabled children and young people and their parents regarding outcomes from support services. University of York: Social Policy Research Unit; 2007. Electronic Citation. www.york.ac.uk/spru via the Internet. Last accessed September 2008.
   Google Scholar
• Hanley B, Bradburn J, Barnes M, Evans C, Goodare H, Kelson M, Kent A, Oliver S, Thomas S, Wallcraft J. Involving the public in NHS, public health, and social care research: Briefing notes for researchers, 2003. Electronic Citation. http://www.invo.org.uk/pdfs/Briefing%20Note%20 final.dat.pdf via the Internet. Last accessed September 2008.
   Google Scholar
• Department of Health. The expert patient: A new approach to chronic disease management for the 21st century. London: Department of Health; 2001b.
   Google Scholar
• Department of Health. Independence, well-being and choice, Cm 6499. London: Department of Health; 2005a.
   Google Scholar
• Department of Health (2005b). Carers and Disabled Children Act 2000 and Carers (Equal Opportunities) Act 2004: Combined Policy Guidance, London: Department of Health; 2005b.
   Google Scholar
• Multidisciplinary Assessment of Technology Centre for Healthcare (MATCH). Electronic Citation. www.match.ac. uk. Last accessed September 2008.
   Google Scholar
• Bridgelal Ram M, Browne N, Grocott P, Weir H. Methodologies to capture user perspectives in medical device development: A survey of the healthcare literature. Multidisciplinary assessment of technologies centre for healthcare (MATCH) Report; Project 3; Deliverable 6; 2005. Electronic Citation. http://www.match.ac.uk via the Internet. Last accessed September 2008.
   Google Scholar
• Entwistle V. Evaluating interventions to promote patient involvement in decision-making: By what criteria should effectiveness be judges? J Health Serv Res Policy 1998;3:100–107.
   PubMedGoogle Scholar
• Martin JL, Murphy E, Crowe JA, Norris BJ. Capturing user requirements in medical device development: The role of ergonomics. Physiol Meas 2006;27:R49–R62.
   PubMed Web of Science ®Google Scholar
• Combs D. Startling technologies promise to transform medicine. Br Med J 2006;333:1308–1311.
   PubMedGoogle Scholar
• Heyes S. A critique of the ideology, power relations and language of user involvement. Electronic Citation. http://www.simon.heyes.btinternet.co.uk/essay via the internet. Last accessed February 2003.
   Google Scholar
• Mulholland SJ, Packer TL, Laschinger SJ, Lysack JT, Wyss UP, Balaram S. Evaluating a new mobility device: Feedback from women with disabilities in India. Disabil Rehabil 2000;22:111–122.
   PubMed Web of Science ®Google Scholar
• Magnusson P, Matthing J, Kristensson P. Managing user involvement in service innovation: Experiments with innovating end users. J Serv Res 2003;6:111–124.
   Google Scholar
• Keates S, Clarkson P. Countering design exclusion: Bridging the gap between usability and accessibility. Univers Access Inform Soc 2003;2:215–225.
   Google Scholar
• Eisma R, Dickinson A, Goodman J, Mival O, Syme A, Tiwari L. Mutual inspiration in the development of new technology for older people. Proceedings of Include 2003;London, UK.
   Google Scholar
• Barron CL. Giving youth a voice: A basis for rethinking adolescent violence. Halifax, NY: Fernwood Publishing; 2000.
   Google Scholar
• Grover S. Why won't they listen to us? On giving power and voice to children participating in social research. Childhood 2004;11:81–93.
   Web of Science ®Google Scholar
• Kirk S. Methodological and ethical issues in conducting qualitative research with children and young people: A literature review. Int J Nurs Stud 2007;44:1250–1260.
   PubMed Web of Science ®Google Scholar
• Kortesluoma R, Hentinen M, Nikkonen, M. Conducting a qualitative child interview: Methodological considerations. J Adv Nurs 2003;42:434–441.
   PubMed Web of Science ®Google Scholar
• Alderson P. Research by children. Int J Soc Res Methodol 2002;4:139–153.
   Google Scholar
• Lewis A, Parsons S, Robertson C. My school my family my life: Telling it like it is. DRC: London; 2006.
   Google Scholar
• McCabe M. Involving children and adolescents in medical decision making: Developmental and clinical considerations. J Pediatr Psychol 1994;21:505–516.
   Google Scholar
• Lightfoot P, Sloper J. Involving disabled and chronically ill children and young people in health service development. Child Care Health Dev 2001;29:15–20.
   Google Scholar
• Morison M, Moir J, Kwansa T. Interviewing children for the purposes of research in primary care. Prim Health Care Res Dev 2000;1:113–130.
   Google Scholar
• Wu R. Explaining treatments to young children. Am J Nurs 1965;65:71–73.
   PubMedGoogle Scholar
• Noyes J. Enabling young ‘ventilator-dependent’ people to express their views and experiences of their care in hospital. J Adv Nurs 2001;31:1206–1215.
   Google Scholar
• Carroll J. Play therapy: The children's views. Child Fam Soc Work 2001;7:177–187.
   Google Scholar
• Hart C, Chesson R. Children as consumers. Br Med J 1998;316:1600–1603.
   PubMed Web of Science ®Google Scholar
• Dixon-Woods M, Young B, Heney D. Partnerships with children. Br Med J 1999;319:778–780.
   PubMedGoogle Scholar
• Franklin A, Sloper P. Listening and responding? Children's participation in health care within England. Int J Child Right 2005;13:11–29.
   Google Scholar
• Sinclair, R. Participation in practice: Making it meaningful, effective and sustainable. Child Soc 2004;(18):106–118.
   Google Scholar
• Franklin A, Madge N. In our view: Children, teenagers and parents talk about services for young people. London: National Children's Bureau; 2000.
   Google Scholar
• Rabiee P, Sloper P, Beresford B. Doing research with children and young people who do not use speech for communication. Child Soc 2005;19:385–396.
   Google Scholar
• Imms C. Children with cerebral palsy participate: A review of the literature. Disabil Rehabil 2008;30:1867–1884.
   PubMed Web of Science ®Google Scholar
• National Disability Authority (NDA). Literature review on attitudes towards disability. National Disability Authority: Dublin, Ireland; 2006.
   Google Scholar
• Wright B. Physical disability: A psychosocial approach. 2nd ed. New York: Harper & Row; 1983.
   Google Scholar
• Cavet J, Sloper P. Participation of disabled children in individual decisions about their lives and in public decisions about service development. Child Soc 2004;18:278–290.
   Google Scholar
• Spicer N, Evans R. Developing children and young people's participation in strategic processes: The experience of the children's fund initiative. Soc Pol Soc 2005;5:177–188.
   Google Scholar
• Connors C, Stalker K. Children's experiences of disability: Pointers to a social model of childhood disability. Disabil Soc 2007;22:19–33.
   Web of Science ®Google Scholar
• Kelly B. ‘Chocolate … makes you autism’: Impairment, disability and childhood identities. Disabil Soc 2005;20:261–275.
   Web of Science ®Google Scholar
• Roberts V, Fels D. Methods for inclusion: Employing think aloud protocols in software usability studies with individuals who are deaf. Int J Hum–Comput Stud 2006;64:489–501.
   Google Scholar
• Sartain S, Clarke C, Heyman R. Hearing the voices of children with chronic illness. J Adv Nurs 2004;32:913–921.
   Google Scholar
• Yalon-Chamovitz S, Weiss P. Virtual reality as a leisure activity for young adults with physical and intellectual disabilities. Res Develop Disabil 2008;29:273–287.
   PubMed Web of Science ®Google Scholar
• Lewis A, Porter J. Interviewing children and young people with learning disabilities: Guidelines for researchers and multi-professional practice. Br J Learn Disabil 2004;32:191–197.
   Google Scholar
• Kiernan C. Participation in research by people with learning disability: Origins and issues. Br J Learn Disabil 1999;27:77–80.
   Google Scholar
• Franklin A, Sloper P. Participation of disabled children and young people in decision-making within social services departments in England. York: Social Policy Research Unit; 2004.
   Google Scholar
• Carlsson E, Paterson B, Scott-Findlay S, Ehnfors M, Ehrenberg A. Methodological issues in interviews involving people with communication impairments after acquired brain damage. Qualitat Health Res 2007;17:1361–1371.
   PubMed Web of Science ®Google Scholar
• Aitken S, Millar S. Listening to children with communication support needs. Scotland: Sense; 2002.
   Google Scholar
• Dunn N, Shields N, Taylor N, Dodd K. Comparing the self concept of children with cerebral palsy to the perceptions of their parents. Disabil Rehabil 2009;31:387–393.
   PubMed Web of Science ®Google Scholar
• Sprangers MAG, Aaronson NK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. J Clin Epidemiol 1992;45:743–760.
   PubMed Web of Science ®Google Scholar
• Ronen GM, Streiner DL, Rosenbaum P. Health-related quality of life in children with epilepsy: Development and validation of self-report and parent proxy measures. Epilepsia 2003;44:598–612.
   PubMed Web of Science ®Google Scholar
• Johnson S, Wang C. Why do adolescents say they are less healthy than their parents think they are? The importance of mental health varies by social class in a nationally representative sample. Pediatrics 2008;121:307–313.
   Google Scholar
• Riley A. Evidence that school-age children can self-report on their health. Ambulatory Pediatr 2004;4:371–376.
   PubMedGoogle Scholar
• Theunissen NCM, Vogels TGC, Koopman HM, Verrips GHW, Zwinderman KAH, Verloove-Vanhorick SP, Wit JM. The proxy problem: Child report versus parent report in health-related quality of life research. Qual Life Res 1998;7:387–397.
   PubMed Web of Science ®Google Scholar
• Light L, Page R, Curran J, Pitkin L. Children's ideas for the design of AAC assistive technologies for young children with complex communication needs. Augment Altern Commun 2007;23:274–287.
   PubMed Web of Science ®Google Scholar
• Holt R, Weightman A, Allsop M, Levesley M, Preston N, Bhakta B. Engaging children in the design of a rehabilitative game interface. Proceeding of INCLUDE 2006; London, UK.
   Google Scholar
• Watson D, Abbot D, Townsley R. Listen to me, too! Lessons from involving children with complex healthcare needs in research about multi-agency services. Child: Care, Health Develop 2006;33:90–95.
   Web of Science ®Google Scholar
• Markopoulos P, Read J, Hoysniemi J, MacFarlane S. Child computer interaction: Advances in methodological research 2008;10:79–81.
   Google Scholar
• Clarke M, McConachie H, Price K, Wood P. Views of young people using augmentative and alternative communication systems. Int J Lang Commun Disord 2001;36:107–115.
   PubMed Web of Science ®Google Scholar
• Alderson, P. Choosing for children: Parents' consent to surgery. Oxford: Oxford University Press; 1990.
   Google Scholar
• Arnstein SR. A ladder of citizen participation'. Am Inst Planners 1969;July:216–224.
   Google Scholar
• Hart R. Children's participation: From tokenism to citizenship. Florence: UNICEF International Child Development Centre; 1992.
   Google Scholar
• Shier H. Pathways to participation: Openings, opportunities and obligations. Child Soc 2001;(15):107–117.
   Google Scholar
• Morrow V. Understanding families: Children's perspectives. London: National Children's Bureau/Joseph Rowntree Foundation; 1998.
   Google Scholar
• Alderson P, Montgomery J. Health care choices: Making decisions with children. London: Institute for Public Policy Research; 1996.
   Google Scholar
• Druin A. The role of children in the design of new technology. Behav Inf Technol 2002;21:1–25.
   Web of Science ®Google Scholar
• Druin A. Cooperative inquiry: Developing new technologies for children with children. Proceedings of CHI 1999. ACM Press: New York; 1999. pp 592–599.
   Google Scholar
• Scaife M, Rogers Y, Aldrich F, Davies M. Designing for or designing with? informant design for interactive learning environments. Proceeding of CHI 1997; March 22–27. pp 343–350.
   Google Scholar
• Rogers Y, Scaife M, Harris E, Phelps T, Price S, Smith H, Muller H, Randell C, Moss A, Taylor I, et al Things aren't what they seem to be: Innovation through technology inspiration. London: Proceedings of the 4th conference on Designing interactive systems: Processes, practices, methods, and techniques.
   Google Scholar
• Gallacher L, Gallagher M. Participatory methods in research with children: A critique. Proceedings of Emerging Issues in the Geographies of Children and Youth 2005. Brunel University, UK; June 23.
   Google Scholar
• Read JC, MacFarlane SJ, Casey C. Endurability, engagement and expectations: Measuring children's fun. In Proceedings of interaction design and children IDC; 2002. pp 189–198.
   Google Scholar
• Antle A. Child-based personas: Need, ability and experience. Cognit Tech Work 2008;10:155–166.
   Google Scholar
• Iversen O, Brodersen C. Building a BRIDGE between children and users: A socio-cultural approach to child–computer interaction. Cognit Tech Work 2008;10:83–93.
   Google Scholar
• Read J. Validating the Fun Toolkit: An instrument for measuring children's opinions of technology. Cognit Tech Work 2008;10:119–128.
   Google Scholar
• Zaman B. Introducing contextual laddering to evaluate the likeability of games with children. Cognit Tech Work 2008;10:107–117.
   Google Scholar
• Höysniemi J, Hämäläinen P, Turkki L. Using peer tutoring in evaluating the usability of a physically interactive computer game with children. Interact Comput 2003;15:205–225.
   Google Scholar
• Barendregt W, Bekker M, Baauw E. Development and evaluation of the problem identification picture cards method. Cognit Tech Work 2008;10:95–105.
   Google Scholar
• Bekker M, Baauw E, Barendregt W. A comparison of two analytical evaluation methods for educational computer games for young children. Cognit Tech Work 2008;10:129–140.
   Google Scholar
• Baauw E, Markopoulous P. A comparison of think-aloud and post-task interview for usability testing with children. Proceedings of IDC04: Interaction Design and Children 2004; ACM Press. pp 115–116.
   Google Scholar
• Als BS, Jensen, JJ, Skov MB. Comparison of think-aloud and constructive interaction in usability testing with children. Interaction Design and Children 2005; June 8–10; Boulder, USA.
   Google Scholar
• Nesset V, Large A. Children in the information technology design process: A review of theories and their applications. Libr Inform Sci Res 2004;26:140–161.
   Web of Science ®Google Scholar
• Markopoulos P, Bekker M. On the assessment of usability testing methods for children. Interact Comput 2003;15:227–243.
   Web of Science ®Google Scholar
• Mazzone E. Requirements gathering in designing technology for children. Proceedings of IDC 2007: Doctoral Consortium; June 6–8; Aalborg, Denmark. pp 197–200.
   Google Scholar
• Bekker M, Beusmans J, Keyson D, Lloyd P. Kid Reporter: A method for engaging children in making a newspaper to gather user requirements. Proceedings of Interaction Design and Children 2002; Eindhoven: Shaker.
   Google Scholar
• Dindler C, Eriksson E, Iversen OE, Lykke-Olesen A, Ludvigsen M. Mission from Mars – A method for exploring user requirements for children in a narrative space. Proceedings of Interaction Design and Children 2005; Boulder, USA.
   Google Scholar
• Davis J. Understanding the meanings of children: A reflexive process. Child Soc 1998;12:325–335.
   Google Scholar
• Kirk S. Methodological and ethical issues in conducting qualitative research with children and young people: A literature review. Int J Nurs Stud 2007;44:1250–1260.
   PubMed Web of Science ®Google Scholar
• Punch S. Research with children: The same or different from research with adults. Childhood 2002;9:321–341.
   Web of Science ®Google Scholar
• Hill M. Participatory research with children: Research review. Child Fam Soc Work 1997;2:171–183.
   Google Scholar
• Smith M, Connolly I. Roles of aided communication: Perspectives of adults who use AAC. Disabil Rehabil: Assist Technol 2008;3:260–273.
   PubMedGoogle Scholar
• Pape T, Kim J, Weiner B. The shaping of individual meanings assigned to assistive technology: A review of personal factors. Disabil Rehabil 2002;24:5–20.
   PubMed Web of Science ®Google Scholar
• Cowan D, Khan Y. Assistive technology for children with complex disabilities. Curr Paediatr 2005;15:207–212.
   Google Scholar
• Rigby P, Ryan S, From W, Walczak E, Jutai J. A client-centred approach to developing assistive technology with children. Occupat Ther Int 1996;3:67–79.
   Google Scholar
• Irwin LG. Interviewing young children: Explicating our practices and dilemmas. Qualitat Health Res 2005;15:821–831.
   PubMed Web of Science ®Google Scholar
• Carnevale FA, Macdonald ME, Bluebond-Langner M, McKeever P. Using participant observation in pediatric health care settings: Ethical challenges and solutions. J Child Health Care 2008;12:18–32.
   PubMed Web of Science ®Google Scholar
• Morgan M, Gibbs S, Maxwell K, Britten N. Hearing children's voices: Methodological issues in conducting focus groups with children aged 7–11 years. Qualitat Res 2002;2:5–20.
   Google Scholar
• Lightfoot J, Sloper, P. Having a say in health: Involving young people with a chronic illness or physical disability in local health services development. Child Soc 2003;17:277–290.
   Google Scholar
• World Health Organisation. International classification of functioning, disability and health: ICF. Geneva: World Health Organisation; 2001.
   Google Scholar
• Rosenbaum P, Stewart D. The World Health Organization International Classification of Functioning, Disability, and Health: A model to guide clinical thinking, practice and research in the field of cerebral palsy. Semin Pediatr Neurol 2004;11:5–10.
   PubMedGoogle Scholar
• Monk A, Wright P, Haber J, Davenport L. Improving your human–computer interface: a practical technique. New Jersey: Prentice-Hall; 1993.
   Google Scholar
• Kemp J, van Gelderen T. Co-discovery exploration: An informal method for iterative design of consumer products. In: Jordan P, Thomas B, Weerdmeester B, McClelland L, editors. Usability evaluation in industry. London: Taylor & Francis; 1996. pp 139–146.
   Google Scholar
• Donker A, Markopoulos P. A comparison of think-aloud, questionnaires and interviews for testing usability with children. Proceedings of HCI; Springer: London; pp 305–316.
   Google Scholar
• Höysniemi J, Hămălăinenb P, Turkki L. Using peer tutoring in evaluating the usability of a physically interactive computer game with children. Interact Comput 2003;15:203–225.
   Web of Science ®Google Scholar
• Baauw E, Bekker MM, Barendregt W. A structured expert evaluation method for the evaluation of children's computer games. Proceedings of human–computer interaction INTERACT 2005Sept 12 – 16; Rome. pp 457–469.
   Google Scholar
• Markopoulos P, Read J, MacFarlane S, Höysniemi J. Evaluating children's interactive products: Principles and practices for interaction designers. London: Morgan Kaufmann; 2008.
   Google Scholar
• Scaife M, Rogers Y. Kids as informants: Telling us what we didn't know, or confirming what we already knew. In: Druin A, editor. The design of children's technology. San Francisco: Morgan Kaufmann; 1999. pp 27–50.
   Google Scholar
• Love T. Philosophy of design: A metatheoretical structure for design theory. Design Stud 2000;21:293–313.
   Google Scholar
• Jorgensen AH. In: Straker L, Pollock C, editors. Towards an epistemology of usability evaluation methods. Proceedings of CybErg 1999: The Second International Cyberspace Conference on Ergonomics. The International Ergonomics Association Press: Perth, Australia, pp 267–275.
   Google Scholar
• National Institute for Health and Clinical Excellence: The guidelines manual. London, National Institute for Health and Clinical Excellence; 2006.
   Google Scholar