Exploring the Potential of Social Media Platforms as Data Collection Methods for Accessing and Understanding Experiences of Youth with Disabilities: A Narrative Review
Keywords:
Social Media, data collection, youth, social engagementAbstract
Purpose: Social media (SM) is a critical component of youth culture, and may provide a useful platform for exploring young people’s authentic voices. This narrative review considers how researchers are exploring the experiences of youth with disabilities using SM.
Methods: Five health and social science databases were searched using terms related to ‘social media’ and ‘data collection’. Articles were reviewed for relevancy. Narrative analysis was undertaken.
Results: Searches returned 1524 results, of which 15 articles were included. SM-based data collection methods fell into three categories: 1) observational; 2) interactive; and 3) combined online/offline, each offering unique advantages to data collection. Literature suggests that SM can be used to effectively explore self-care, coping and social experiences of youth with health conditions, however youth with disabilities were notably absent from all three categories.
Conclusion: As a prominent component of youth culture, researchers have turned to SM-based data collection methods to understand youths’ real-world experiences. It is imperative, however, that the voices of youth with varied abilities and backgrounds be included in the conversation.
References
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Syred, J., Naidoo, C., Woodhall, S. C., & Baraitser, P. (2014). Would you tell everyone this? Facebook conversations as health promotion interventions. J Med Internet Res, 16(4), 1-9.
Tonks, A., Lyons, A. C., & Goodwin, I. (2015). Researching online visual displays on social networking sites: Methodologies and meanings. Qualitative Research in Psychology, 12(3), 326-339.
Wickenden, M., & Kembhavi-Tam, G. (2014). Ask us too! Doing participatory research with disabled children in the global south. Childhood, 21(3), 400-417.
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Alshaikh, F., Ramzan, F., Rawaf, S., & Majeed, A. (2014). Social network sites as a mode to collect health data: A systematic review. Journal of Medical Internet Research, 16(7), 1-13.
Bae, J. M. (2014). Narrative reviews. Epidemiology and Health, 36, 1-8.
Bond, C. S., Ahmed, O. H., Hind, M., Thomas, B., & Hewitt-Taylor, J. (2013). The conceptual and practical ethical dilemmas of using health discussion board posts as research data. J Med Internet Res, 15(6), 246-255.
Cheung, C. M. K., Chiu, P.-Y., & Lee, M. K. O. (2011). Online social networks: Why do students use facebook? Computers in Human Behavior, 27(4), 1337-1343. doi: 10.1016/j.chb.2010.07.028
Elden, S. (2012). Inviting the Messy: Drawing Methods and 'Children's Voices. Childhood, 20(1), 66-81.
Greenhalgh, T., Wong, G., Westhorp, G., & Pawson, R. (2011). Protocol - Realist and meta-narrative evidence synthesis: evolving standards (RAMSES). BMC Medical Research Methodology, 11(115), 10. doi: 10.1186/1471-2288-11-115
Guidry, J. P., Carlyle, K., Messner, M., & Jin, Y. (2015). On pins and needles: how vaccines are portrayed on Pinterest. Vaccine, 33(39), 5051-5056. doi: 10.1016/j.vaccine.2015.08.064
Guidry, J. P., Zhang, Y., Jin, Y., & Parrish, C. (2016). Portrayals of depression on Pinterest and why public relations practitioners should care. Public Relations Review, 42(1), 232-236. doi: 10.1016/j.pubrev.2015.09.002
Hemsley, B., & Murray, J. (2015). Distance and proximity: research on social media connections in the field of communication disability. Disabil Rehabil, 37(17), 1509-1510. doi: 10.3109/09638288.2015.1057031
Hubbard, S. (2004). Disability studies and health care curriculum: The great divide. Journal of Allied Health, 33(3), 184-188.
Keim-Malpass, J., Albrecht, T. A., Steeves, R. H., & Danhauer, S. C. (2013). Young women's experiences with complementary therapies during cancer described through illness blogs. West J Nurs Res, 35(10), 1309-1324. doi: 10.1177/0193945913492897
Keim-Malpass, J., Stegenga, K., Loudin, B., Kennedy, C., & Kools, S. (2016). "It's Back! My Remission Is Over": Online Communication of Disease Progression Among Adolescents With Cancer. J Pediatr Oncol Nurs, 33(3), 209-217. doi: 10.1177/1043454215600424
King, G., Imms, C., Stewart, D., Freeman, M., & Nguyen, T. (2017). A transactional framework for pediatric rehabilitation: shifting the focus to situated contexts, transactional processes, and adaptive developmental outcomes. Disability and Rehabilitation, 1-13. doi: 10.1080/09638288.2017.1309583
Kirk, S., & Milnes, L. (2016). An exploration of how young people and parents use online support in the context of living with cystic fibrosis. Health Expectations: An International Journal of Public Participation in Health Care & Health Policy, 19(2), 309-321
Kosinski, M., Matz, S. C., Gosling, S. D., Popov, V., & Stillwell, D. (2015). Facebook as a research tool for the social sciences: Opportunities, challenges, ethical considerations, and practical guidelines. Am Psychol, 70(6), 543-556. doi: 10.1037/a0039210
Lafferty, N. T., & Manca, A. (2015). Perspectives on social media in and as research: A synthetic review. Int Rev Psychiatry, 27(2), 85-96. doi: 10.3109/09540261.2015.1009419
Luh Sin, H. (2015). “You're Not Doing Work, You're on Facebook!”: Ethics of Encountering the Field Through Social Media. Professional Geographer, 67(4), 676-685. doi: 10.1080/00330124.2015.1062706
Lunnay, B., Borlagdan, J., McNaughton, D., & Ward, P. (2015). Ethical use of social media to facilitate qualitative research. Qual Health Res, 25(1), 99-109. doi: 10.1177/1049732314549031
Mason, D. M., & Ide, B. (2014). Adapting qualitative research strategies to technology savvy adolescents. Nurse Researcher, 21(5), 40-45.
McGarry, O. (2016). Repositioning the research encounter: exploring power dynamics and positionality in youth research. International Journal of Social Research Methodology, 19(3), 339-354. doi: 10.1080/13645579.2015.1011821
Monks, H., Cardoso, P., Papageorgiou, A., Carolan, C., Costello, L., & Thomas, L. (2015). Young people's views regarding participation in mental health and wellbeing research through social media. The International Journal of Emotional Education, 7(1), 4-19.
Moreno, M. A., Goniu, N., Moreno, P. S., & Diekema, D. (2013). Ethics of social media research: common concerns and practical considerations. Cyberpsychol Behav Soc Netw, 16(9), 708-713. doi: 10.1089/cyber.2012.0334
Moreno, M. A., Grant, A., Kacvinsky, L., Moreno, P., & Fleming, M. (2012). Older adolescents' views regarding participation in Facebook research. Journal of Adolescent Health, 51(5), 439-444
Moreno, M. A., Ton, A., Selkie, E., & Evans, Y. (2016). Secret society 123: Understanding the language of self-harm on Instagram. Journal of Adolescent Health, 58(1), 78-84.
Naslund, J. A., Grande, S. W., Aschbrenner, K. A., & Elwyn, G. (2014). Naturally occurring peer support through social media: the experiences of individuals with severe mental illness using YouTube. PLoS ONE [Electronic Resource], 9(10), e110171.
World Health Organization (2011). World Report on Disability. Geneva.
Park, B. K., & Calamaro, C. (2013). A systematic review of social networking sites: Innovative platforms for health research targeting adolescents and young adults. Journal of Nursing Scholarship, 45(3), 256-264.
Pew Research Center. (2011). Teens, kindness and cruelty on social networking sites: Pew Research Center.
Raghavendra, P., Wood, D., Newman, L., & Lawry, J. (2012). Why aren't you on Facebook?: Patterns and experiences of using the Internet among young people with physical disabilities. Technology & Disability, 24(2), 149-162 114p.
Shapka, J. D., Domene, J. F., Khan, S., & Yang, L. M. (2016). Online versus in-person interviews with adolescents: An exploration of data equivalence. Computers in Human Behavior, 58, 361-367.
Shpigelman, C.-N., & Gill, C. J. (2014). Facebook use by persons with disabilities. Journal of Computer-Mediated Communication, 19(3), 610-624.
Syred, J., Naidoo, C., Woodhall, S. C., & Baraitser, P. (2014). Would you tell everyone this? Facebook conversations as health promotion interventions. J Med Internet Res, 16(4), 1-9.
Tonks, A., Lyons, A. C., & Goodwin, I. (2015). Researching online visual displays on social networking sites: Methodologies and meanings. Qualitative Research in Psychology, 12(3), 326-339.
Wickenden, M., & Kembhavi-Tam, G. (2014). Ask us too! Doing participatory research with disabled children in the global south. Childhood, 21(3), 400-417.
Yi-Frazier, J. P., Cochrane, K., Mitrovich, C., Pascual, M., Buscaino, E., Eaton, L., . . . Malik, F. (2015). Using Instagram as a Modified Application of Photovoice for Storytelling and Sharing in Adolescents With Type 1 Diabetes. Qual Health Res, 25(10), 1372-1382. doi: 10.1177/1049732315583282
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