Analysing people with head and neck cancers’ use of online support groups


Online support groups have become a familiar source of social support for people with a variety of health issues. To date, no research has investigated the use of such groups by people with head and neck cancer (H&N). The aim of this study was to assess the types of social support, both sought and offered, within online support groups (OSGs) for head and neck cancer. Data was collected from 18 OSGs and two coding schemes; the Social Support Behaviour Code and the scheme of Coursaris & Liu (2009), were used to analyse the content of support-seeking and support-offering messages. The results suggested that the most frequently offered types of social support by group members were informational (43.4%) and emotional (32.4%), followed by esteem (15.6%) and network support (6.1%), whereas little tangible assistance was offered (2.4%). The content of support-seeking messages included group members sharing personal experience (31.5%), with the most frequent sought support being informational support (25.5%). The OSGs can be advantageous to people with H&N cancer, especially for those with appearance or speech problems to mitigate their embarrassment and facilitate interaction with others. The present findings suggest that such OSGs can be promising sources of H&N cancer-related informational and emotional support for the recipients, whether they are patients, family members or carers.

Bibliographic citation

Algtewi, E. E., Owens, J., & Baker, S. R. (2015). Analysing people with head and neck cancers’ use of online support groups. Cyberpsychology: Journal of Psychosocial Research on Cyberspace, 9(4), Article 6. doi:


Online support groups; head cancer; neck cancer; social support

Full Text:



Show references Hide references

Agarwal, M., Hamilton, J. B., Crandell, J. L., & Moore, C. E. (2010). Coping strategies of African American head and neck cancer survivors. Journal of Psychosocial Oncology, 28, 526-538.

Al-Azri, M., Al-Awisi, H., & Al-Moundhri, M. (2009). Coping with a diagnosis of breast cancer-literature review and implications for developing countries. The Breast Journal, 15, 615-622.

Antonovsky, A. (1979). Health, stress and coping. San Fransico: Josset-Bass.

Baker, C. (1992). Factors associated with rehabilitation in head and neck cancer. Cancer Nursing, 15, 395-400.

Berkman, L. F., & Syme, S. L. (1979). Social networks, host resistance and mortality: A nine-year follow-up study of Alameda County residents. American Journal of Epidemiology, 109, 186-204.

Braithwaite, D. O., Waldron, V. R., & Finn, J. (1999). Communication of social support in computer-mediated groups for people with disabilities. Health Communication, 11, 123-151.

Broom, A. (2005). The eMale: Prostate cancer, masculinity and online support as a challenge to medical expertise. Journal of Sociology, 41, 87-104.

Callahan, C. (2004). Facial disfigurement and sense of self in head and neck cancer. Social Work in Health Care, 40(2), 73-87.

Chaturvedi, S. K., Shenoy, A., Prasad, K. M. R., Senthilnathan, S. M., & Premlatha, B. S. (1996). Concerns, coping and quality of life in head and neck cancer patients. Supportive Care in Cancer, 4, 186-190.

Chueh, Y., Lin, H., Yu, C., Cheng, S., Chen, I., Liao, C., . . . Chang, J. (2009). Social support service impact to the anxiety and depression of oral cavity cancer patients in Taiwan. European Journal of Cancer Supplements, 7, 493-493.

Cobb, S. (1976). Social support as a moderator of life stress. Psychosomatic medicine, 38, 300-314.

Coulson, N. S. (2005). Receiving social support online: An analysis of a computer-mediated support group for individuals living with irritable bowel syndrome. CyberPsychology & Behavior, 8, 580-584.

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, 173-178.

Coulson, N. S., & Greenwood, N. (2012). Families affected by childhood cancer: An analysis of the provision of social support within online support groups. Child Care Health and Development, 38, 870-877.

Coursaris, C. K., & Liu, M. (2009). An analysis of social support exchanges in online HIV/AIDS self-help groups. Computers in Human Behavior, 25, 911-918.

Cutrona, C. E., & Suhr, J. A. (1992). Controllability of stressful events and satisfaction with spouse support behaviors. Communication Research, 19, 154-174.

de Leeuw, J. R. J., de Graeff, A., Ros, W. J. G., Blijham, G. H., Hordijk, G. J., & Winnubst, J. A. M. (2000). Prediction of depressive symptomatology after treatment of head and neck cancer: The influence of pre-treatment physical and depressive symptoms, coping, and social support. Head & Neck, 22, 799-807.<799::AID-HED9>3.0.CO;2-E

de Leeuw, J. R. J., de Graeff, A., Ros, W. J. G., Hordijk, G. J., Blijham, G. H., & Winnubst, J. A. M. (2000). Negative and positive influences of social support on depression in patients with head and neck cancer: A prospective study. Psycho-Oncology, 9, 20-28.<20::AID-PON425>3.0.CO;2-Y

Dropkin, M. J. (2001). Anxiety, coping strategies, and coping behaviors in patients undergoing head and neck cancer surgery. Cancer Nursing, 24, 143-148.

Durkheim, E. (1951). Suicide: A study in sociology. London: Free Press.

Elani, H. W., & Allison, P. J. (2011). Coping and psychological distress among head and neck cancer patients. Supportive Care in Cancer, 19, 1735-1741.

Elani, H., Edgar, L., & Allison, P. J. (2009). Anxiety, depression and coping in head and neck cancer patients. Oral Oncology 3, 61.

Elwell, L., Grogan, S., & Coulson, N. (2011). Adolescents living with cancer the role of computer-mediated support groups. Journal of Health Psychology, 16, 236-248.

Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., & Stern, A. (2004). Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions. British Medical Journal, 328, 1166-1170A.

Eysenbach, G., & Till, J. E. (2001). Ethical issues in qualitative research on internet communities. British Medical Journal, 323, 1103-1105.

Ferlay, J., Soerjomataram, I., Dikshit, R., Eser, S., Mathers, C., Rebelo, M., . . . Bray, F. (2015). Cancer incidence and mortality worldwide: Sources, methods and major patterns in GLOBOCAN 2012. International Journal of Cancer, 136, E359-386.

Finn, J. (1999). An exploration of helping processes in an online self-help group focusing on issues of disability. Health & Social Work, 24, 220-231.

Flicker, S., Haans, D., & Skinner, H. (2004). Ethical dilemmas in research on internet communities. Qualitative Health Research, 14, 124-134.

Gamba, A., Romano, M., Grosso, I. M., Tamburini, M., Cantu, G., Molinari, R., & Ventafridda, V. (1992). Psychosocial adjustment of patients surgically treated for head and neck cancer. Head & Neck, 14, 218–223.

Haahr, M. (1998). True random number services: Introduction to randomness and random numbers [Web log comment]. Retrieved from

Hagedoorn, M., & Molleman, E. (2006). Facial disfigurement in patients with head and neck cancer: The role of social self-efficacy. Health Psychology, 25, 643–647.

Helft, P. R., Hlubocky, F., & Daugherty, C. K. (2003). American oncologists' views of internet use by cancer patients: A mail survey of American Society of Clinical Oncology members. Journal of Clinical Oncology, 21, 942-947.

Helgeson, V. S., & Cohen, S. (1996). Social support and adjustment to cancer: Reconciling descriptive, correlational, and intervention research. Health Psychology, 15, 135-148.

Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS medicine, 7(7). e1000316.

Houston, V., & Bull, R. (1994). Do people avoid sitting next to someone who is facially disfigured? European Journal of Social Psychology, 24, 279–284.

Howren, M. B., Christensen, A. J., & Karnell, L. H. (2011). Influence of pre-treatment social support on post treatment depression and health – related quality of life in patients with head and neck cancer. Annals of Behavioral Medicine; 41(Suppl. 1), S59 –S59.

Karim-Kos, H. E., de Vries, E., Soerjomataram, I., Lemmens, V., Siesling, S., & Coebergh, J.W. (2008). Recent trends of cancer in Europe: A combined approach of incidence, survival and mortality of 17 cancer sites since the 1990s. European Journal of Cancer, 44, 1345-89.

Karnell, L. H., Christensen, A. J., Rosenthal, E. L., Magnuson, J. S., & Funk, G. F. (2007). Influence of social support on health-related quality of life outcomes in head and neck cancer. Head & Neck, 29(2), 143-146.

Katz, M. R., Irish, J. C., Devins, G. M., Rodin, G. M., & Gullane, P. J. (2003). Psychosocial adjustment in head and neck cancer: The impact of disfigurement, gender and social support. Head & Neck, 25, 103-12.

Kim, J., Han, J. Y., Shaw, B., McTavish, F., & Gustafson, D. (2010). The roles of social support and coping strategies in predicting breast cancer patients' emotional well-being testing mediation and moderation models. Journal of Health Psychology, 15, 543-552.

Lazarus, R. S. (1976). Psychological stress and the coping process. New York: McGraw-Hill.

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.

List, M. A., Rutherford, J. L., Stracks, J., Haraf, D., Kies, M. S., & Vokes, E. E. (2002). An exploration of the pretreatment coping strategies of patients with carcinoma of the head and neck. Cancer, 95, 98-104.

Loader, B. D., Muncer, S., Burrows, R., Pleace, N., & Nettleton, S. (2002). Medicine on the line? Computer-mediated social support and advice for people with diabetes. International Journal of Social Welfare, 11, 53-65.

McDonough, E. M., Boyd, J. H., Varvares, M. A., & Maves, M. D. (1996). Relationship between psychological status and compliance in a sample of patients treated for cancer of the head and neck. Head & Neck, 18, 269-276.<269::AID-HED9>3.0.CO;2-Y

Mo, P. K. H., & Coulson, N. S. (2008). Exploring the communication of social support within virtual communities: A content analysis of messages posted to an online HIV/AIDS support group. CyberPsychology & Behavior, 11, 371-374.

NICE (2004). Improving outcomes in head and neck cancers: The manual. National Institute for Clinical Excellence. Retrieved from

Petticrew, M., Bell, R., & Hunter, D. (2002). Influence of psychological coping on survival and recurrence in people with cancer: Systematic review. British Medical Journal, 325, 1066-1069.

Preece, J. (1999). Empathy online. Virtual Reality, 4, 74-84.

Reeves, P. M. (2000). Coping in cyberspace: The impact of internet use on the ability of HIV-positive individuals to deal with their illness. Journal of Health Communication, 5(Suppl. 1), 47–59.

Rogers, S. N., Hannah, L., Lowe, D., & Magennis, P. (1999). Quality of life 5-10 years after primary surgery for oral and oro-pharyngeal cancer. Journal of Cranio-Maxillofacial Surgery, 27, 187-191.

Rozmovits, L., & Ziebland, S. (2004). What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs. Patient Education and Counseling, 53, 57-64.

Sherman, A. C., Simonton, S., Adams, D. C., Vural, E., & Hanna, E. (2000). Coping with head and neck cancer during different phases of treatment. Head & Neck, 22, 787-793.<787::AID-HED7>3.0.CO;2-R

Stanton, A. L., Danoff-Burg, S., Cameron, C. L., Bishop, M., Collins, C. A., Kirk, S. B., . . . Twillman, R. (2000). Emotionally expressive coping predicts psychological and physical adjustment to breast cancer. Journal of Consulting and Clinical Psychology, 68, 875-882.

Stanton, A. L., Revenson, T. A., & Tennen, H. (2007). Health psychology: Psychological adjustment to chronic disease. Annual Review of Psychology, 58, 565-592.

Tolentino E. D. S., Centurion, B. S., Ferreira, L. H., Souza, A. P., Damante, J. H., & Rubira-Bullen, I. R. (2011). Oral adverse effects of head and neck radiotherapy: Literature review and suggestion of a clinical oral care guideline for irradiated patients. Journal of Applied Oral Science, 19, 448-54.

van Cann, E. M., Dom, M., Koole, R., Merkx, M. A. W., & Stoelinga, P. J. W. (2005). Health related quality of life after mandibular resection for oral and oropharyngeal squamous cell carcinoma. Oral Oncology, 41, 687-693.

Vidhubala, E., Ravikannan, R., Mani, C. S., Karthikesh, M., & Latha (2006). Coping preferences of head and neck cancer patients - Indian context. Indian journal of cancer, 43, 6-11.

Vlahovic, T. A., Wang, Y., Kraut, R. E., & Levine, J. M. (2014). Support matching and satisfaction in an online breast cancer support community. In CHI '14 Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (pp. 1625-1634).

Walther, J. B., & Boyd, S. (2002). Attraction to computer-mediated social support. In: C. A. Lin & D. Atkin (Eds.), Communication technology and society: Audience adoption and uses (pp. 153-188). Cresskill, NJ: Hampton Press.

Wang, Y. C., Kraut, R., & Levine, J. M. (2012). To Stay or leave? The relationship of emotional and informational support to commitment in online health support groups. In Proceedings of the ACM 2012 conference on Computer Supported Cooperative Work (pp. 833-842). ACM.

White, M. H., & Dorman, S. M. (2000). Online support for caregivers - Analysis of an Internet Alzheimer mailgroup. Computers in Nursing, 18, 168-176.

White, M. H., & Dorman, S. M. (2001). Receiving social support online: Implications for health education. Health Education Research, 16, 693-707.

Winzelberg, A. (1997). The analysis of an electronic support group for individuals with eating disorders. Computers in Human Behavior, 13, 393-407.

Crossref Cited-by (5)

The listed references are provided by Cited-by (Crossref service) and thus do not represent the full list of sources citing the article.

1. Social support and mental health
Eyun-Jung Ki, JooYoung Jang
Journal of Asian Pacific Communication  vol: 28,  issue: 2,  first page: 226,  year: 2018

2. Cyber Criminology
Zhraa A. Alhaboby, Doaa Alhaboby, Haider M. Al-Khateeb, Gregory Epiphaniou, Dhouha Kbaier Ben Ismail, Hamid Jahankhani, Prashant Pillai
ISBN 978-3-319-97181-0  Chapter 11,  first page: 227,  year: 2018

3. Online support groups for head and neck cancer and health-related quality of life
Eamar Algtewi, Janine Owens, Sarah R. Baker
Quality of Life Research  vol: 26,  issue: 9,  first page: 2351,  year: 2017

4. Digital Technology, Eating Behaviors, and Eating Disorders
David Šmahel, Hana Macháčková, Martina Šmahelová, Michal Čevelíček, Carlos A. Almenara, Jana Holubčíková
ISBN 978-3-319-93221-7  Chapter 2,  first page: 21,  year: 2018

5. Analysis of Content Shared in Online Cancer Communities: Systematic Review
Mies C van Eenbergen, Lonneke V van de Poll-Franse, Emiel Krahmer, Suzan Verberne, Floortje Mols
JMIR Cancer  vol: 4,  issue: 1,  first page: e6,  year: 2018

Copyright (c) 2015 Cyberpsychology: Journal of Psychosocial Research on Cyberspace

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.