309
Views
3
CrossRef citations to date
0
Altmetric
Articles

Evaluating Digital Peer Support for Children Cured from Cancer

ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon

References

  • Adams, A., & Cox, A. L. (2008). Questionnaires, in-depth interviews and focus groups. In P. Cairns & A. L. Cox (Eds.), Research methods for human computer interaction (pp. 17–34). Cambridge, UK: Cambridge University Press.
  • Aldridge, J. (2012). The participation of vulnerable children in photographic research. Visual Studies, 27 (1), 48–58.
  • Ali, K., Farrer, L., Gulliver, A., & Griffiths, K. M. (2015). Online peer-to-peer support for young people with mental health problems: A systematic review. JMIR Mental Health, 2 (2), e19.
  • Als, B. S., Jensen, J. J., & Skov, M. B. (2005). Comparison of think-aloud and constructive interaction in usability testing with children. Proceedings of the 2005 Conference on Interaction Design and Children, pp. 9–16, Boulder, Colorado.
  • Andrews, D., Nonnecke, B., & Preece, J. (2003). Electronic survey methodology: A case study in reaching hard-to-involve Internet users. International Journal of Human-Computer Interaction, 16 (2), 185–210.
  • Baauw, E., & Markopoulous, P. (2004). A comparison of think-aloud and post-task interview for usability testing with children. Proceedings of the 2004 conference on Interaction design and children: building a community, pp. 115–116, Maryland, USA.
  • Barak, A., Boniel-Nissim, M., & Suler, J. (2008). Fostering empowerment in online support groups. Computers in Human Behavior, 24 (5), 1867–1883.
  • Barendregt, W., & Bekker, M. M. (2005). Development and evaluation of the picture cards method. Proceedings of Interact 2005, Tenth International Conference on Human–Computer Interaction, Rome, Italy.
  • Bell, V. (2007). Online information, extreme communities and internet therapy: Is the internet good for our mental health? Journal of Mental Health, 16 (4), 445–457.
  • Bers, M. U., Beals, L. M., Chau, C., Satoh, K., Blume, E. D., DeMaso, D. R., & Gonzalez‐Heydrich, J. (2010). Use of a virtual community as a psychosocial support system in pediatric transplantation. Pediatric Transplantation, 14 (2), 261–267.
  • Bers, M. U., Gonzalez-Heydrich, J., & DeMaso, D. R. (2001). Identity construction environments: Supporting a virtual therapeutic community of pediatric patients undergoing dialysis. Presented at Proceedings of the SIGCHI Conference on Human factors in Computing Systems, pp. 380–387, Seattle, WA.
  • Bevan, N. (2008). Classifying and selecting UX and usability measures. International Workshop on Meaningful Measures: Valid Useful User Experience Measurement, 13–18, Reykjavik, Iceland.
  • Bevan, N., Kirakowski, J., & Maissel, J. (1991). What is usability? Proceedings of HCI International ‘91, Stuttgart, Germany.
  • Borgers, N., De Leeuw, E., & Hox, J. (2000). Children as respondents in survey research: Cognitive development and response quality 1. Bulletin De Methodologie Sociologique, 66 (1), 60–75.
  • Börjesson, P., Barendregt, W., Eriksson, E., & Torgersson, O. (2015). Designing technology for and with developmentally diverse children: A systematic literature review. Proceedings of the 14th International Conference on Interaction Design and Children, pp. 79–88, Boston, MA.
  • Bratteteig, T., Wagner, I., Morrison, A., Stuedahl, D., & Mörtberg, C. (2010). Research practices in digital design. In I. Wagner, T. Bratteteig, & D. Stuedahl (Eds.), Exploring digital design (pp. 17–54). London, England: Springer.
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3 (2), 77–101.
  • Byrne, D. (2009). Case-based methods: Why we need them; what they are; how to do them. In D. Byrne & C. C. Ragin (Eds.), The SAGE handbook of case-based methods (pp. 1–13). London, England: SAGE Publications Ltd.
  • Colombo, L., & Landoni, M. (2014). A diary study of children’s user experience with EBooks using flow theory as framework. Proceedings of the 2014 Conference on Interaction Design and Children, pp. 135–144, Aarhus, Denmark.
  • Cooper, A., Reimann, R., & Cronin, D. (2007). About face 3: The essentials of interaction design. Indianapolis, IN: John Wiley & Sons.
  • Coulson, N. S., Buchanan, H., & Aubeeluck, A. (2007). Social support in cyberspace: A content analysis of communication within a Huntington’s disease online support group. Patient Education and Counseling, 68 (2), 173–178.
  • Darbyshire, P., MacDougall, C., & Schiller, W. (2005). Multiple methods in qualitative research with children: More insight or just more? Qualitative Research, 5 (4), 417–436.
  • Diefenbach, S., Kolb, N., & Hassenzahl, M. (2014). The ‘hedonic’ in human–computer interaction: History, contributions, and future research directions. Proceedings of the 2014 conference on Designing interactive systems, pp. 305–314, Vancouver, Canada.
  • Donker, A., & Markopoulos, P. (2002). A comparison of think-aloud, questionnaires and interviews for testing usability with children. Proceedings of HCI ‘02, London, England.
  • Druin, A. (1999). Cooperative inquiry: Developing new technologies for children with children. Proceedings of CHI, pp. 592–599, Pittsburgh, PA.
  • Einberg, E.-L., Svedberg, P., Enskär, K., & Nygren, J. M. (2014). Friendship relations from the perspective of children with experience of cancer treatment a focus group study with a salutogenic approach. Journal of Pediatric Oncology Nursing, 32 (3), 153–164.
  • Eiser, C. (2007). Beyond survival: Quality of life and follow-up after childhood cancer. Journal of Pediatric Psychology, 32 (9), 1140–1150.
  • Elf, M. (2013). User involvement in designing a web-based support system for young carers–inspiring views and systemic barriers ( PhD Doctoral thesis). University of Gothenburg, Faculty of Social Sciences, Gothenburg, Sweden.
  • Elf, M., Rystedt, H., Lundin, J., & Krevers, B. (2012). Young carers as co-designers of a web-based support system–the views of two publics. Informatics for Health and Social Care, 37 (4), 203–216.
  • Ellis, R. D., & Kurniawan, S. H. (2000). Increasing the usability of online information for older users: A case study in participatory design. International Journal of Human–Computer Interaction, 12 (2), 263–276.
  • Enskär, K., & Berterö, C. (2010). Young adult survivors of childhood cancer; experiences affecting self-image, relationships, and present life. Cancer Nursing, 33 (1), E18–E24.
  • Giesbers, J., Verdonck-De Leeuw, I., Van Zuuren, F., Kleverlaan, N., & van der Linden, M. (2010). Coping with parental cancer: Web-based peer support in children. Psycho-Oncology, 19 (8), 887–892.
  • Graham, A., Powell, M., Taylor, N., Anderson, D., & Fitzgerald, R. (2013). Ethical research involving children. Florence, Italy: UNICEF Office of Research-Innocenti.
  • Gulliksen, J., Göransson, B., Boivie, I., Blomkvist, S., Persson, J., & Cajander, Å. (2003). Key principles for user-centred systems design. Behaviour and Information Technology, 22 (6), 397–409.
  • Gustafsson, G., Kogner, P., & Heyman, M. (2014). Childhood cancer incidence and survival in Sweden 1984–2010—report 2013. In G. Gustafsson, P. Kogner, & M. Heyman (Eds.), The swedish childhood cancer registry. Stockholm, Sweden: Karolinska Institute.
  • Hanna, L., Risden, K., & Alexander, K. (1997). Guidelines for usability testing with children. Interactions, 4 (5), 9–14.
  • Hassenzahl, M. (2010). Experience design: Technology for all the right reasons. San Francisco, CA: Morgan & Claypool.
  • Hassenzahl, M., Eckoldt, K., Diefenbach, S., Laschke, M., Len, E., & Kim, J. (2013). Designing moments of meaning and pleasure. Experience design and happiness. International Journal of Design, 7, 21–31.
  • Hassenzahl, M., & Tractinsky, N. (2006). User experience-a research agenda. Behaviour & Information Technology, 25 (2), 91–97.
  • Hevner, A. R., March, S. T., Park, J., & Ram, S. (2004). Design science in information systems research. MIS Quarterly, 28 (1), 75–105.
  • Hoppe, M. J., Wells, E. A., Morrison, D. M., Gillmore, M. R., & Wilsdon, A. (1995). Using focus groups to discuss sensitive topics with children. Evaluation Review, 19 (1), 102–114.
  • Iivari, J., Isomäki, H., & Pekkola, S. (2010). The user–the great unknown of systems development: Reasons, forms, challenges, experiences and intellectual contributions of user involvement. Information Systems Journal, 20 (2), 109–117.
  • Irwin, L. G., & Johnson, J. (2005). Interviewing young children: Explicating our practices and dilemmas. Qualitative Health Research, 15 (6), 821–831.
  • Kavanaugh, K., Moro, T. T., Savage, T., & Mehendale, R. (2006). Enacting a theory of caring to recruit and retain vulnerable participants for sensitive research. Research in Nursing & Health, 29 (3), 244–252.
  • Klemm, P., & Hardie, T. (2002). Depression in Internet and face-to-face cancer support groups: A pilot study. Oncology Nursing Forum, 29 (4), E45–E51.
  • Kuhn, K. (2000). Problems and benefits of requirements gathering with focus groups: A case study. International Journal of Human–Computer Interaction, 12 (3–4), 309–325.
  • Kujala, S. (2003). User involvement: A review of the benefits and challenges. Behaviour & Information Technology, 22 (1), 1–16.
  • Lewis, J. R. (2014). Usability: Lessons learned… and yet to be learned. International Journal of Human–Computer Interaction, 30 (9), 663–684.
  • Liamputtong, P. (2006). Researching the vulnerable: A guide to sensitive research methods. London, England: Sage.
  • Lindberg, S. (2013). Participatory design workshops with children with cancer: Lessons learned. Proceedings of the 12th International Conference on Interaction Design and Children, pp. 332–335, New York, NY.
  • Lindberg, S., Thomsen, M., & Åkesson, M. (2014). Ethics in health promoting PD: Designing digital peer support with children cured from cancer. Proceedings of the 13th Participatory Design Conference, pp. 91–100, Windhoek, Namibia.
  • Lindberg, S., Wärnestål, P., Nygren, J., & Svedberg, P. (2014). Designing digital peer support for children: Design patterns for social interaction. Presented at Interaction Design and Children, Aarhus, Denmark.
  • Lindgaard, G. (2015). Challenges to assessing usability in the Wild: A case study. International Journal of Human–Computer Interaction, 31 (9), 618–631.
  • Luszczynska, A., Pawlowska, I., Cieslak, R., Knoll, N., & Scholz, U. (2013). Social support and quality of life among lung cancer patients: A systematic review. Psycho-Oncology, 22 (10), 2160–2168.
  • Markopoulos, P., & Bekker, M. (2003). On the assessment of usability testing methods for children. Interacting with Computers, 15 (2), 227–243.
  • Markopoulos, P., Read, J. C., MacFarlane, S., & Hoysniemi, J. (2008). Evaluating children’s interactive products: Principles and practices for interaction designers. Burlington, MA: Morgan Kaufmann.
  • McGee, M., Rich, A., & Dumas, J. (2004). Understanding the usability construct: User-perceived usbility. Proceedings of the Human Factors and Ergonomics Society Annual Meeting, 48 (5), 907–911.
  • McNamara, N., & Kirakowski, J. (2005). Defining usability: Quality of use or quality of experience? Proceedings of the International Professional Communication Conference, pp. 200–204, Limerick, Ireland.
  • Melling, B., & Houguet-Pincham, T. (2011). Online peer support for individuals with depression: A summary of current research and future considerations. Psychiatric Rehabilitation Journal, 34 (3), 252–254.
  • Melrose, M. (2002). Labour pains: Some considerations on the difficulties of researching juvenile prostitution. International Journal of Social Research Methodology, 5 (4), 333–351.
  • Meyer, A., Coroiu, A., & Korner, A. (2015). One‐to‐one peer support in cancer care: A review of scholarship published between 2007 and 2014. European Journal of Cancer Care, 24 (3), 299–312.
  • Moore, L. W., & Miller, M. (1999). Initiating research with doubly vulnerable populations. Journal of Advanced Nursing, 30 (5), 1034–1040.
  • Morrow, V., & Richards, M. (1996). The ethics of social research with children: An overview. Children & Society, 10 (2), 90–105.
  • Potter, L. E., Korte, J., & Nielsen, S. (2014). Design with the deaf: Do deaf children need their own approach when designing technology? Proceedings of the 2014 Conference on Interaction Design and Children, pp. 249–252, Aarhus, Denmark.
  • Potts, H. W. (2005). Online support groups: An overlooked resource for patients. He@Lth Information on the Internet, 44 (1), 6–8.
  • Powell, M. A., & Smith, A. B. (2009). Children’s participation rights in research. Childhood, 16 (1), 124–142.
  • Punch, S. (2002). Research with Children: The same or different from research with adults? Childhood, 9 (3), 321–341.
  • Ragin, C. C. (1992). Introduction: Cases of “What is a case?”. In C. C. Ragin & H. C. Becker (Eds.), What is a case?: Exploring the foundations of social inquiry (pp. 1–17). Cambridge, UK: Cambridge University Press.
  • Read, J., & MacFarlane, S. (2006). Using the fun toolkit and other survey methods to gather opinions in child computer interaction. Presented at Interaction Design and Children, Tampere, Finland.
  • Read, J., MacFarlane, S., & Casey, C. (2002). Endurability, engagement and expectations: Measuring children’s fun. Proceedings of Interaction Design and Children, Eindhoven, Netherlands.
  • Rogers, Y., Sharp, H., & Preece, J. (2011). Interaction design: Beyond human–computer interaction (3rd ed.). Chischester, UK: John Wiley & Sons Ltd.
  • Rubin, J., & Chisnell, D. (2008). Handbook of usability testing: How to plan, design and conduct effective tests (2nd ed.). Indianapolis, IN: John Wiley & Sons.
  • Ruland, C. M., Starren, J., & Vatne, T. M. (2008). Participatory design with children in the development of a support system for patient-centered care in pediatric oncology. Journal of Biomedical Informatics, 41 (4), 624–635.
  • Schwartz, C. E., & Sendor, R. M. (1999). Helping others helps oneself: Response shift effects in peer support. Social Science & Medicine, 48 (11), 1563–1575.
  • Sim, G., & Horton, M. (2012). Investigating children’s opinions of games: fun toolkit vs. this or that. Proceedings of the 11th International Conference on Interaction Design and Children, pp. 70–77, Bremen, Germany.
  • Solomon, P. (2004). Peer support/peer provided services underlying processes, benefits, and critical ingredients. Psychiatric Rehabilitation Journal, 27 (4), 392.
  • Van Kesteren, I. E., Bekker, M. M., Vermeeren, A. P., & Lloyd, P. A. (2003). Assessing usability evaluation methods on their effectiveness to elicit verbal comments from children subjects. Proceedings of the 2003 conference on Interaction design and children, pp. 41–49, Lancashire, Preston, England.
  • Wärnestål, P., & Nygren, J. (2013). Building an experience framework for a digital peer support service for children surviving from cancer. Presented at Interaction Design and Children, New York, NY.
  • Wärnestål, P., Svedberg, P., & Nygren, J. (2014). Co-constructing child personas for health-promoting services with vulnerable children. Proceedings of CHI, pp. 3767–3776, Toronto, Canada.
  • Webb, M., Burns, J., & Collin, P. (2008). Providing online support for young people with mental health difficulties: Challenges and opportunities explored. Early Intervention in Psychiatry, 2 (2), 108–113.
  • Yin, R. K. (2014). Case study research: Design and methods (5th ed.). London, England: Sage publications.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.