Challenges facing online research: Experiences from research concerning cyber-victimisation of people with disabilities

Special issue: Internet use and disability


The victimisation of people living with disabilities and chronic conditions is a documented phenomenon. It ranges from harassment incidents to disability hate crimes, and causes physical, mental and psychosocial consequences. The Internet has further reshaped this phenomenon which lead to “cyber-victimisation” experiences, with no less impact upon victims. This methodology paper focuses mainly on the challenges and implications of using online methods in a UK-based study exploring the impact of cyber-victimisation on people coping with disabilities and chronic conditions. Mixed-method design was adopted via an online-survey followed by in-depth interviewing of victims. Online recruitment was through victim-support groups, patient-support groups, and social media. Out of 80 organisations and charities approached, 51(63.8%) gatekeepers helped to reach participants. Recruitment and data collection process was challenged by four overarching themes: 1) social identity in online support groups, 2) the role of online gatekeepers, 3) the contradictory role of social media, and 4) promoting inclusivity. These challenges were theorised from the perspective of the Social Identity Theory. Representing self as a victim and/or a disabled-person had its implications on virtual groups’ membership, social media use, gatekeepers’ decisions and subsequent participation. Some identity aspects were highlighted as positive points to improve engagement with research. In conclusion, the Internet has aggravated the vulnerability of people with disabilities, but it also has a huge potential in researching sensitive topics with this group. Future research in the cyberspace should acknowledge the challenges of online identities of disabled victimised people, and focus on positive identity aspects to facilitate the research process and encourage collaborative participation at early stages of research.

Author biographies

Zhraa A. Alhaboby

Zhraa is a qualified medical doctor (MBBS), and MSc in International Primary Healthcare from Barts and the London School of Medicine and Dentistry (QMUL). She has a cross-cultural clinical experience overseas in over 18 hospitals and clinics. In a multidisciplinary team she conducted a Community-Based Participatory Research (CBPR) to evaluate a peer-support programme in East London, she is actively involved in culturally-sensitive health promotion campaigns. She teaches undergraduate and postgraduate modules in the Faculty of Health and Social Sciences. Zhraa is currently researching the impact of cyber-victimisation on people living with chronic conditions at the Institute for Health Research (IHR), University of Bedfordshire.

James Barnes

Jim is a Chartered Psychologist and an Associate Fellow of the British Psychological Society (BPS). His personal research interests focus on the neuropsychological aspect of cognition, particularly psychosis and deviant behaviours in both clinical patients and the general population. He has been involved in a variety of projects working with individuals with Parkinson's disease, dyslexia, PTSD and more recently has been a member of the National Centre of Cyberstalking Research (NCCR), and is currently working with Bedfordshire PCC and the Home office on a national cyber harassment Police project. 

Hala Evans

Dr Evans is a senior lecturer in Public Health at the University of Bedfordshire, UK. She leads/teaches two core academic modules for postgraduate students in health studies. Her research interests are focused on four main areas, inequality in health, violence/aggression in schools, communicable diseases and non-communicable diseases and health and lifestyle.

Emma Short

Emma is a Chartered Psychologist and Associate Fellow of the British Psychological Society. As Director of the National Centre for Cyberstalking Research she is a researcher in online behaviour, principle investigator of the ECHO project and currently leading a Home Office funded project for Cyberharassment creating a Platform for Evidence Gathering, Assessing Risk & Managing Policing. The NCCR is a multidisciplinary team investigating the methods, nature and impact of cyberstalking. Emma’s research has identified that the impact of sustained online threat which characterises cyberstalking poses significant risk, with many victims reporting clinical levels of PTSD.


al-Khateeb, H. M., Epiphaniou, G., Alhaboby, Z. A., Barnes, J., & Short, E. (2016). Cyberstalking: Investigating Formal Intervention and the Role of Corporate Social Responsibility. Telematics and Informatics. Advanced online publication.

Alhaboby, Z. A., al-Khateeb, H. M., Barnes, J., & Short, E. (2016). The language is disgusting and they refer to my disability: The cyberharassment of disabled people. Disability & Society, 31, 1138-1143.

Anastasiou, D., & Kauffman, J. M. (2013). The social model of disability: Dichotomy between impairment and disability. Journal of Medicine and Philosophy, 38, 441-459.

Annerbäck, E.-M., Sahlqvist, L., & Wingren, G. (2014). A cross-sectional study of victimisation of bullying among schoolchildren in Sweden: Background factors and self-reported health complaints. Scandinavian Journal of Public Health, 42, 270-277.

Anastasiou, D., & Kauffman, J. M. (2013). The social model of disability: Dichotomy between impairment and disability. Journal of Medicine and Philosophy, 38, 441-459.

Annerbäck, E.-M., Sahlqvist, L., & Wingren, G. (2014). A cross-sectional study of victimisation of bullying among schoolchildren in Sweden: Background factors and self-reported health complaints. Scandinavian Journal of Public Health, 42, 270-277.

Bate, P. (2000). Synthesizing research and practice: Using the action research approach in health care settings. Social Policy & Administration, 34, 478-493.

Biro, D. (2012). An anatomy of illness. Journal of Medical Humanities, 33, 41-54.

Boynton, P. M., & Greenhalgh, T. (2004). Selecting, designing, and developing your questionnaire. BMJ, 328, 1312-1315.

BPS. (2010). Code of Human Research Ethics. Leicester : British Psychological Society.

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101.

Buettgen, A., Richardson, J., Beckham, K., Richardson, K., Ward, M., & Riemer, M. (2012). We did it together: A participatory action research study on poverty and disability. Disability & Society, 27, 603-616.

Buijs, P., Boot, E., Shugar, A., Fung, W. L. A., & Bassett, A. S. (2016). Internet safety issues for adolescents and adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 30, 416-418.

Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4, 167-182.

Carlson, L. (2013). Research ethics and intellectual disability: Broadening the debates. The Yale journal of biology and medicine, 86, 303-314.

Cohn, S. (2015). 'Trust my doctor, trust my pancreas': Trust as an emergent quality of social practice. Philosophy, Ethics, and Humanities in Medicine, 10, 9.

Coulson, N. S. (2015). Exploring patients’ engagement with web-based peer support for Inflammatory Bowel Disease: Forums or Facebook? Health Psychology Update, 24(2), 3-8.

De Cesarei, A., & Baldaro, B. (2015). Doing online research involving university students with disabilities: Methodological issues. Computers in Human Behavior, 53, 374-380.

De Korte-Verhoef, M. C., Pasman, H. R. W., Schweitzer, B. P., Francke, A. L., Onwuteaka-Philipsen, B. D., & Deliens, L. (2014). General practitioners’ perspectives on the avoidability of hospitalizations at the end of life: A mixed-method study. Palliative medicine, 28, 949-958.

DH. (2005). Research Governance Framework for Health and Social Care. Department of Health.

Didden, R., Scholte, R. H. J., Korzilius, H., de Moor, J. M., Vermeulen, A., O'Reilly, M., . . . Lancioni, G. E. (2009). Cyberbullying among students with intellectual and developmental disability in special education settings. Developmental Neurorehabilitation, 12, 146-151 146p.

Dingwall-Jones, C. (2014). “Antic dispositions?” The representation of madness in modern British theatre. University of Kent.

Dreßing, H., Bailer, J., Anders, A., Wagner, H., & Gallas, C. (2014). Cyberstalking in a large sample of social network users: Prevalence, characteristics, and impact upon victims. Cyberpsychology, Behavior, and Social Networking, 17, 61-67.

Dunn, D. S., & Burcaw, S. (2013). Disability identity: Exploring narrative accounts of disability. Rehabilitation Psychology, 58, 148-157.

EA. (2010a). Equality Act 2010: Chapter 15.

EA. (2010b). Guidance on matters to be taken into account in determining questions relating to the definition of disability Equality Act 2010.

Emerson, E., & Roulstone, A. (2014). Developing an evidence base for violent and disablist hate crime in Britain: Findings From the Life Opportunities Survey. Journal of Interpersonal Violence, 29, 3086-3104.

Forhan, M. (2009). An analysis of disability models and the application of the ICF to obesity. Disability and rehabilitation, 31, 1382-1388.

Fox, S., & Purcell, K. (2010). Chronic disease and the internet. Pew Internet & American Life Project.

Fridh, M., Lindström, M., & Rosvall, M. (2015). Subjective health complaints in adolescent victims of cyber harassment: Moderation through support from parents/friends - a Swedish population-based study. BMC Public Health, 15, 949-949.

Goldsmith, L., & Skirton, H. (2015). Research involving people with a learning disability–methodological challenges and ethical considerations. Journal of Research in Nursing, 20, 435-446.

Gustafson, D. L., & Brunger, F. (2014). Ethics,“vulnerability,” and feminist participatory action research with a disability community. Qualitative Health Research, 24, 997-1005.

Hinder, S., & Greenhalgh, T. (2012). This does my head in Ethnographic study of self-management by people with diabetes. BMC Health Serv Res, 12(1), 83.

Horowitz, J. A., Vessey, J. A., Carlson, K. L., Bradley, J. F., Montoya, C., McCullough, B., & David, J. (2004). Teasing and bullying experiences of middle school students. Journal of the American Psychiatric Nurses Association, 10, 165-172.

Hugh-Jones, S., & Smith, P. K. (1999). Self-reports of short- and long-term effects of bullying on children who stammer. British Journal of Educational Psychology, 69, 141-158.

Humpage, L. (2007). Models of disability, work and welfare in Australia. Social Policy & Administration, 41, 215-231.

Husserl, E. (2012). Logical investigations (Vol. 1): Routledge.

Jackson, M. (2013). The special educational needs of adolescents living with chronic illness: A literature review. International Journal of Inclusive Education, 17, 543-554.

Kipnis, K. (2001). Vulnerability in research subjects: A bioethical taxonomy. Ethical and policy issues in research involving human participants, 2.

Kouwenberg, M., Rieffe, C., Theunissen, S. C. P. M., & de Rooij, M. (2012). Peer victimization experienced by children and adolescents who are deaf or hard of hearing. PLoS ONE, 7(12), e52174-e52174.

Kowalski, R. M., & Fedina, C. (2011). Cyber bullying in ADHD and Asperger Syndrome populations. Research in Autism Spectrum Disorders, 5, 1201-1208.

Kroll, T., Neri, M. T., & Miller, K. (2005). Using mixed methods in disability and rehabilitation research. Rehabilitation Nursing, 30, 106-113.

Krumholz, H. M., Curry, L. A., & Bradley, E. H. (2011). Survival after acute myocardial infarction (SAMI) study: the design and implementation of a positive deviance study. American Heart Journal, 162, 981-987.

Levine, C., Faden, R., Grady, C., Hammerschmidt, D., Eckenwiler, L., & Sugarman, J. (2004). The limitations of “vulnerability” as a protection for human research participants. The American Journal of Bioethics, 4, 44-49.

Lorig, K. R., Ritter, P., Stewart, A. L., Sobel, D. S., Brown Jr, B. W., Bandura, A., . . . Holman, H. R. (2001). Chronic disease self-management program: 2-year health status and health care utilization outcomes. Medical care, 39, 1217-1223.

Lorig, K. R., Ritter, P. L., Laurent, D. D., & Plant, K. (2006). Internet-based chronic disease self-management: A randomized trial. Medical care, 44, 964-971.

Lorig, K. R., Sobel, D. S., Ritter, P. L., Laurent, D., & Hobbs, M. (2000). Effect of a self-management program on patients with chronic disease. Effective Clinical Practice: ECP, 4, 256-262.

Maple, C., Short, E., & Brown, A. (2011). Cyberstalking in the United Kingdom: An analysis of the ECHO pilot survey. National Centre for Cyberstalking Research: University of Bedfordshire.

Maple, C., Short, E., Brown, A., Bryden, C., & Salter, M. (2012). Cyberstalking in the UK: Analysis and Recommendations. International Journal of Distributed Systems and Technologies (IJDST), 3(4), 34-51.

Mayoh, J., & Onwuegbuzie, A. J. (2013). Toward a conceptualization of mixed methods phenomenological research. Journal of Mixed Methods Research, 9, 91-107.

Mayoh, J., & Onwuegbuzie, A. J. (2014). Surveying the landscape of mixed methods phenomenological research. International Journal of Multiple Research Approaches, 8(1), 2-14.

MCA. (2005). Mental Capacity Act: Code of Practice. Department for Constitutional Affairs. London: TSO.

McDermott, M. S., & While, A. E. (2013). Maximizing the healthcare environment: A systematic review exploring the potential of computer technology to promote self-management of chronic illness in healthcare settings. Patient Education and Counseling, 92, 13-22.

Merolli, M., Gray, K., & Martin-Sanchez, F. (2013). Health outcomes and related effects of using social media in chronic disease management: A literature review and analysis of affordances. Journal of Biomedical Informatics, 46, 957-969.

Meyer, J. (2000). Using qualitative methods in health related action research. BMJ, 320(7228), 178-181.

Miller, R. A. (2015). Intersections of disability, gender, and sexuality in higher education: exploring students’ social identities and campus experiences [dissertation]. Austin: The University of Texas at Austin.

Miserandino, C. (2003). The Spoon Theory. Retrieved from

Mishna, F., McLuckie, A., & Saini, M. (2009). Real-world dangers in an online reality: A qualitative study examining online relationships and cyber abuse. Social Work Research, 33, 107-118.

Molin, M., Sorbring, E., & Löfgren-Mårtenson, L. (2015). Teachers’ and parents’ views on the Internet and social media usage by pupils with intellectual disabilities. Journal of Intellectual Disabilities, 19, 22-33.

Morris, R. (2013). ‘Unjust, inhumane and highly inaccurate’: the impact of changes to disability benefits and services–social media as a tool in research and activism. Disability & Society, 28, 724-728.

Nicolaidis, C., Raymaker, D., Katz, M., Oschwald, M., Goe, R., Leotti, S., . . . Hughes, R. B. (2015). Community-based participatory research to adapt health measures for use by people with developmental disabilities. Progress in Community Health Partnerships: Research, Education, And Action, 9, 157-170.

Nind, M. (2009). Conducting qualitative research with people with learning, communication and other disabilities: Methodological challenges. ESRC National Centre for Research Methods Review Paper. National Centre for Research Methods. Retrieved from

Nind, M., & Vinha, H. (2014). Doing research inclusively: Bridges to multiple possibilities in inclusive research. British Journal of Learning Disabilities, 42, 102-109.

Normand, C. L., & Sallafranque‐St‐Louis, F. (2016). Cybervictimization of young people with an intellectual or developmental disability: Risks specific to sexual solicitation. Journal of Applied Research in Intellectual Disabilities, 29, 99-110.

O'connor, A., Jackson, L., Goldsmith, L., & Skirton, H. (2014). Can I get a retweet please? Health research recruitment and the Twittersphere. Journal of Advanced Nursing, 70, 599-609.

ODI. (2014). Disability prevalence estimates Office for Disability Issues.

ONS. (2011). Population Estimates by Ethnic Group: Methodology Paper. Office for National Statistics

ONS. (2012). Office for National Statistics: Ethnicity and National Identity in England and Wales 2011.

ONS. (2014). Internet Access – Households and Individuals 2014. Retrieved from

Quarmby, K. (2011). Scapegoat: How we are failing disabled people: London: Portobello Books.

Quarmby, K. (2015). Disability hate crime motivation survey – results. Retrieved from

Ramey, D. R., Raynauld, J. P., & Fries, J. F. (1992). The health assessment questionnaire 1992: Status and review. Arthritis Care & Research, 5, 119-129.

Richardson, L., Beadle-Brown, J., Bradshaw, J., Guest, C., Malovic, A., Himmerich, J., . . . McGill, P. (2016). 'I felt that I deserved it'-experiences and implications of disability hate crime. Tizard Learning Disability Review, 21, 80-88.

Sentenac, M., Arnaud, C., Gavin, A., Molcho, M., Gabhainn, S. N., & Godeau, E. (2011). Peer victimization among school-aged children with chronic conditions. Epidemiologic Reviews, 34, 120-128.

Sentenac, M., Gavin, A., Gabhainn, S. N., Molcho, M., Due, P., Ravens-Sieberer, U., . . . Godeau, E. (2013). Peer victimization and subjective health among students reporting disability or chronic illness in 11 Western countries. European Journal of Public Health, 23, 421-426.

Sheridan, L. P., & Grant, T. (2007). Is cyberstalking different? Psychology, Crime & Law, 13, 627-640.

Short, E., Linford, S., Wheatcroft, J. M., & Maple, C. (2014). The impact of cyberstalking: The lived experience - a thematic analysis. Stud Health Technol Inform, 199, 133-137.

Siddiqui, N., & Fitzgerald, A. (2014). Elaborated integration of qualitative and quantitative perspectives in mixed methods research: A profound enquiry into the nursing practice environment. Journal of Multiple Research Approaches, 8, 137-147.

Sofronoff, K., Dark, E., & Stone, V. (2011). Social vulnerability and bullying in children with asperger syndrome. Autism, 15, 355-372.

Sorbring, E., & Lundin, L. (2012). Mothers’ and fathers’ insights into teenagers’ use of the internet. New Media & Society, 14, 1181-1197.

Stanford. (2015). Self-efficacy for managing chronic disease 6-item scale. Retrieved from

Sunderland, N., Chenoweth, L., Matthews, N., & Ellem, K. (2014). 1000 Voices: Reflective online multimodal narrative inquiry as a research methodology for disability research. Qualitative Social Work, 14, 48-64.

Tajfel, H. (2010). Social identity and intergroup relations: Cambridge University Press.

Turner, J. C., Brown, R. J., & Tajfel, H. (1979). Social comparison and group interest in ingroup favouritism. European Journal of Social Psychology, 9, 187-204.

Walker, D.-M. (2013). The internet as a medium for health service research. Part 1. Nurse researcher, 20(4), 18-21.

Wells, M., & Mitchell, K. J. (2007). Youth sexual exploitation on the Internet: DSM-IV diagnoses and gender differences in co-occurring mental health issues. Child & Adolescent Social Work Journal, 24, 235-260.

Wells, M., & Mitchell, K. J. (2014). Patterns of Internet use and risk of online victimization for youth with and without disabilities. The Journal of Special Education, 48, 204-213.

WHO. (2014). Global Status Report on Non-Communicable Diseases.

Wiles, R. (2012). What are qualitative research ethics? London & New York: Bloomsbury Publishing.

Wiles, R., Crow, G., Charles, V., & Heath, S. (2007). Informed consent and the research process: Following rules or striking balances? Sociological Research Online, 12(2).

Yen, C.-F., Chou, W.-J., Liu, T.-L., Ko, C.-H., Yang, P., & Hu, H.-F. (2014). Cyberbullying among male adolescents with attention-deficit/hyperactivity disorder: Prevalence, correlates, and association with poor mental health status. Research in Developmental Disabilities, 35, 3543-3553.

Zinner, S. H., Conelea, C. A., Glew, G. M., Woods, D. W., & Budman, C. L. (2012). Peer victimization in youth with Tourette syndrome and other chronic tic disorders. Child Psychiatry And Human Development, 43, 124-136.





PDF views