Social media support for women with endometriosis: A systematic review
DOI:
https://doi.org/10.24200/jonus.vol8iss2pp289-315Abstract
Background and Purpose: Social media is a key source of health information. Previous studies have indicated that women with endometriosis turn to the Internet for information about the condition and illness management. However, there is a dearth of studies on endometriosis online support
groups. In contrast, studies examining the role of online support groups for other long-term
conditions have been extensive. A systematic review of research on endometriosis support groups on social media and their efficacy was conducted to address this gap.
Methodology: Using a qualitative systematic review method and Meta-Analyses Protocols (PRISMA-P)., research databases, namely Research Gate, Springer, Wiley Online Library, Science Direct, Jstore, and PubMed, were manually searched using keywords such as "social support," "endometriosis support online," and "Facebook support & online communication". The review examined research related to endometriosis support on Facebook. Based on inclusion and exclusion criteria, 100 full-text papers were extracted from the initial 200 publications. 36 papers were selected following the appraisal stage and thematically analysed.
Findings: Social media platforms, namely Endometriosis Facebook support groups, are found to set expectations, provide education, and highlight ways to manage chronic illness. Three prominent themes were identified: (1) topics related to social media support groups, (2) the efficiency of Virtual Help Communities for Endometriosis Patients, and (3) forms of support that women with endometriosis require.
Contributions: The findings support two primary points. Endometriosis Facebook support groups educate women about the illness, connect them with others in similar situations, and promote illness discussion and networking, hence pointing to the potential benefit of Facebook support groups as a platform to provide both support and education.
Keywords: Health communication, women health research, social media, online support, endometriosis.
References
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Andreassen, C. S. (2015). Online social network site addiction: A comprehensive review. Current Addiction Reports, 2(1), 175–184.
Arora, N. K., Finney Rutten, L. J., Gustafson, D. H., Moser, R., & Hawkins, R. P. (2007). Perceived helpfulness and impact of social support provided by
family, friends, and health care providers to women newly diagnosed with breast cancer. PsychoOncology, 16(5), 474-486.
Avery, J., Ottey, S., Morman, R., Cree-Green, M., & Gibson-Helm, M. (2020). Polycystic ovary syndrome support groups and their role in awareness,
advocacy and peer support: A systematic search and narrative review. Current Opinion in Endocrine and Metabolic Research, 11(1), 98–104.
Barak, A., Boniel-Nissim, M., & Suler, J. (2008). Fostering empowerment in online support groups. Computers in Human Behavior, 14(5), 1867–1883.
Bulletti, C., Coccia, M. E., Battistoni, S., & Borini, A. (2010). Endometriosis and infertility. Journal of Assisted Reproduction and Genetics, 17(8), 441-447.
Cavaggioni, G., Lia, C., Resta, S., Antonielli, T., Benedetti Panici, P., Megiorni, F., & Porpora, M. G. (2014). Are mood and anxiety disorders and
alexithymia associated with endometriosis? A Preliminary Study. BioMed Research International, 2014(1), 786830.
Cavallo, D. N., Brown, J. D., Tate, D. F., DeVellis, R. F., Zimmer, C., & Ammerman, A. S. (2014). The role of companionship, esteem, and informational
support in explaining physical activity among young women in an online social network intervention. Journal of Behavioural Medicine, 37(5), 955-966.
Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98(2), 310–357.
Coulson N. S. (2005). Receiving social support online: An analysis of a computer-mediated support group for individuals living with irritable bowel
syndrome. Cyberpsychology & Behaviour: The Impact of The Internet, Multimedia and Virtual Reality on Behaviour and Society, 8(6), 580–584.
Cleak, H., & Howe, J. L. (2004). Social networks and use of social supports of minority elders in East Harlem. Social Work in Health Care, 38(1), 19-38.
Frison, E., & Eggermont, S. (2016). Exploring the relationships between different types of Facebook use, perceived online social support, and
adolescents’ depressed mood. Social Sciences Computer Review, 34(1), 153-171.
Frost, J., & Massagli, M. (2008). Social uses of personal health information within PatientsLikeMe, an online patient community: What can happen
when patients have access to one another’s data. Journal of Medical Internet Research, 10(3), 1-10.
Gao, X., Yeh, Y. C., Outley, J., Simon, J., Botteman, M., & Spalding, J. (2006). Health-related quality of life burden of women with endometriosis: A
literature review. Current Medical Research and Opinion, 11(9), 1787–1797.
Gilmour, J. A., Huntington, A., & Wilson, H. V. (2008). The impact of Endometriosis on work and social participation. International Journal of Nursing
Practice, 14(1), 443-448.
Grunberg, P. H., Dennis, C. L., Da Costa, D., & Zelkowitz, P. (2018). Infertility patients need and preferences for online peer support. Reproductive
Biomedicine & Society Online, 6(1), 80-89.
Gundi, M., & Subramanyam, M. A. (2019). Menstrual health communication among Indian adolescents: A mixed-methods study. PLoS ONE, 14(10),
e0223923.
Halimah, S. (2022, February 15). Some 350,000 Malaysian women affected by endometriosis. The News Strait Times online.
https://www.nst.com.my/news/nation/1011/01/771679/some-350000-malaysian-women-affected-endometriosis
Holowka, E. M. (2022). Mediating pain: Navigating Endometriosis on social media. Frontiers in Pain Research, 3(1), 1-12.
Indian, M., & Grieve, R. (2014). When Facebook is easier than face-to-face: Social support derived from Facebook in socially anxious individuals.
Personality and Individual Differences, 59(1), 101-106.
Johnston, A. C., Worrell, J. L., Di Gangi, P. M., & Wasko, M. (2013). Online health communities: An assessment of the influence of participation on
patient empowerment outcomes. Information Technology & People, 26(2), 213–235.
Jones, G., Jenkinson, C., & Kennedy, S. (2004). The impact of Endometriosis upon quality of life: A qualitative analysis. Journal of Psychosomatic
Obstetrics & Gynaecology, 15(1), 113–133.
Kamarck, T. W., Manuck, S. B., & Jennings, J. R. (1990). Social support reduces Cardiovascular reactivity to physiological challenge: A laboratory model.
Psychosomatic Medicine, 51(1), 41-58.
Krsmanovic, A., & Dean, M. (2021). How women suffering from Endometriosis disclose about their disorder at work. Health Communication, 37(8),
991–1003.
Li, Y., Wang, X., Lin, X., & Hajli, M. (2018). Seeking and sharing health information on social media: A net valence model and cross-cultural comparison.
Technological Forecasting and Social Change, 116(1), 18–40.
Malik, S. H., & Coulson, N. S. (2008). Computer-mediated infertility support groups: An exploratory study of online experiences. Patient Education and
Counseling, 73(1), 105–113.
Marki, G., Vasarhelyi, D., & Rigo, A. (2022). Challenges of and possible solutions for living with Endometriosis: A qualitative study. BMC Women's
Health, 22(20), 1-11.
Mirabolghasemi, M., & Iahad, N. A. (2017). Cancer patients on Facebook: A theoretical framework. 14th International Conference on Social
Implications of Computers in Developing Countries (ICT4D), May 2017, Yogyakarta, Indonesia (pp. 718-717). HAL open science.
Moradi, M., Parker, M., Sneddon, A., Lopez, V., & Ellwood, D. (2014). Impact of Endometriosis on women’s lives: A qualitative study. BMC Women’s
Health, 14(123), 1-12.
Nadkarni, A., & Hofmann, S. G. (2012). Why do people use Facebook? Personality and Individual Differences, 51(3), 143-149.
Oh, H. J., Lauckner, C., Boehmer, J., Fewins-Bliss, R., & Li, K. (2013). Facebooking for health: An examination into the solicitation and effects of health-
related social support on social networking sites. Computers in Human Behavior, 19(5), 1071-1080.
Pickles, T., Ruether, J. D., Weir, L., Carlson, L., Jakulj, F., & SCRN Communication Team (2007). Psychosocial barriers to active surveillance for the
management of early prostate cancer and a strategy for increased acceptance. BJU international, 100(3), 544–551.
Palant, A., & Himmel, W. (2019). Are there also negative effects of social support? A qualitative study of patients with inflammatory bowel disease. BMJ
Open, 9(1), e011641.
Pierret, J. (2003). The illness experience: State of knowledge and perspectives for research. Sociology of Health & Illness, 15(3), 4–11.
Preece, J. (2001). Sociability and usability in online communities: Determining and measuring success. Behaviour & Information Technology, 10(5),
347-356.
Roystonn, K., Vaingankar, J. A., Chua, B. Y., Sambasivam, R., Shafie, S., Jeyagurunathan, A., … Subramaniam, M. (2020). The public health impact and
policy implications of online support group use for mental health in Singapore: Cross-Sectional Survey. JMIR Mental Health, 7(8), e18114.
Seo, M., Kim, J., & Yang, H. (2016). Frequent interaction and fast feedback predict perceived social support: Using crawled and self-reported data of
Facebook users. Journal of Computer-Mediated Communication, 11(4), 181-197.
Shoebotham, A., & Coulson, N. S. (2016). Therapeutic affordances of online support group use in women with Endometriosis. Journal of Medical
Internet Research, 18(5), e109.
Sormunen, T., Karlgren, K., Aanesen, A., Fossum, B., & Westerbotn, M. (2020). The role of social media for persons affected by infertility. BMC Women’s
Health, 20(112), 1-8.
Tunin, R., Uziely, B., & Woloski‐Wruble, A. C. (2010). First degree relatives of women with breast cancer: Who's providing information and support and
who'd they prefer. Psycho‐Oncology, 19(4), 413-430.
Van den Haspel, K., Reddington, C., Healey, M., Li, R., Dior, U., & Cheng, C. (2022). The role of social media in management of individuals with
endometriosis: A cross‐sectional study. Australian and New Zealand Journal of Obstetrics and Gynaecology, 61(5), 701–706.
Whitney, M. L. (1998). Importance of lay organizations for coping with endometriosis. The Journal of Reproductive Medicine, 43(3), 331-334.
Wilson, S., Mogan, S., Coulson, N., & Tham, J. S. (2022). Exploring the role of a WhatsApp online community in supporting the needs of women living
with endometriosis in Malaysia: An interview study. Asian Women, 38(1), 59-76.
Wilson, S., Mogan, S., & Kaur, K. (2020). Understanding the role of Facebook to support women with Endometriosis: A Malaysian perspective.
International Journal of Nursing Practice, 16(4), e12833.
Wright, K. (2000). Perceptions of on‐line support providers: An examination of perceived homophily, source credibility, communication and social
support within on‐line support groups. Communication Quarterly, 48(1), 44-59.
Zhang, Y., He, D., & Sang, Y. (2013). Facebook as a platform for health information and communication: A case study of a diabetes group. Journal of
Medical System, 37(1), 9941.
Zhang, R. (2017). The stress-buffering effect of self-disclosure on Facebook: An examination of stressful life events, social support, and mental health
among college students. Computers in Human Behaviour, 75(1), 517-537.
Andreassen, C. S. (2015). Online social network site addiction: A comprehensive review. Current Addiction Reports, 2(1), 175–184.
Arora, N. K., Finney Rutten, L. J., Gustafson, D. H., Moser, R., & Hawkins, R. P. (2007). Perceived helpfulness and impact of social support provided by
family, friends, and health care providers to women newly diagnosed with breast cancer. PsychoOncology, 16(5), 474-486.
Avery, J., Ottey, S., Morman, R., Cree-Green, M., & Gibson-Helm, M. (2020). Polycystic ovary syndrome support groups and their role in awareness,
advocacy and peer support: A systematic search and narrative review. Current Opinion in Endocrine and Metabolic Research, 11(1), 98–104.
Barak, A., Boniel-Nissim, M., & Suler, J. (2008). Fostering empowerment in online support groups. Computers in Human Behavior, 14(5), 1867–1883.
Bulletti, C., Coccia, M. E., Battistoni, S., & Borini, A. (2010). Endometriosis and infertility. Journal of Assisted Reproduction and Genetics, 17(8), 441-447.
Cavaggioni, G., Lia, C., Resta, S., Antonielli, T., Benedetti Panici, P., Megiorni, F., & Porpora, M. G. (2014). Are mood and anxiety disorders and
alexithymia associated with endometriosis? A Preliminary Study. BioMed Research International, 2014(1), 786830.
Cavallo, D. N., Brown, J. D., Tate, D. F., DeVellis, R. F., Zimmer, C., & Ammerman, A. S. (2014). The role of companionship, esteem, and informational
support in explaining physical activity among young women in an online social network intervention. Journal of Behavioural Medicine, 37(5), 955-966.
Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98(2), 310–357.
Coulson N. S. (2005). Receiving social support online: An analysis of a computer-mediated support group for individuals living with irritable bowel
syndrome. Cyberpsychology & Behaviour: The Impact of The Internet, Multimedia and Virtual Reality on Behaviour and Society, 8(6), 580–584.
Cleak, H., & Howe, J. L. (2004). Social networks and use of social supports of minority elders in East Harlem. Social Work in Health Care, 38(1), 19-38.
Frison, E., & Eggermont, S. (2016). Exploring the relationships between different types of Facebook use, perceived online social support, and
adolescents’ depressed mood. Social Sciences Computer Review, 34(1), 153-171.
Frost, J., & Massagli, M. (2008). Social uses of personal health information within PatientsLikeMe, an online patient community: What can happen
when patients have access to one another’s data. Journal of Medical Internet Research, 10(3), 1-10.
Gao, X., Yeh, Y. C., Outley, J., Simon, J., Botteman, M., & Spalding, J. (2006). Health-related quality of life burden of women with endometriosis: A
literature review. Current Medical Research and Opinion, 11(9), 1787–1797.
Gilmour, J. A., Huntington, A., & Wilson, H. V. (2008). The impact of Endometriosis on work and social participation. International Journal of Nursing
Practice, 14(1), 443-448.
Grunberg, P. H., Dennis, C. L., Da Costa, D., & Zelkowitz, P. (2018). Infertility patients need and preferences for online peer support. Reproductive
Biomedicine & Society Online, 6(1), 80-89.
Gundi, M., & Subramanyam, M. A. (2019). Menstrual health communication among Indian adolescents: A mixed-methods study. PLoS ONE, 14(10),
e0223923.
Halimah, S. (2022, February 15). Some 350,000 Malaysian women affected by endometriosis. The News Strait Times online.
https://www.nst.com.my/news/nation/1011/01/771679/some-350000-malaysian-women-affected-endometriosis
Holowka, E. M. (2022). Mediating pain: Navigating Endometriosis on social media. Frontiers in Pain Research, 3(1), 1-12.
Indian, M., & Grieve, R. (2014). When Facebook is easier than face-to-face: Social support derived from Facebook in socially anxious individuals.
Personality and Individual Differences, 59(1), 101-106.
Johnston, A. C., Worrell, J. L., Di Gangi, P. M., & Wasko, M. (2013). Online health communities: An assessment of the influence of participation on
patient empowerment outcomes. Information Technology & People, 26(2), 213–235.
Jones, G., Jenkinson, C., & Kennedy, S. (2004). The impact of Endometriosis upon quality of life: A qualitative analysis. Journal of Psychosomatic
Obstetrics & Gynaecology, 15(1), 113–133.
Kamarck, T. W., Manuck, S. B., & Jennings, J. R. (1990). Social support reduces Cardiovascular reactivity to physiological challenge: A laboratory model.
Psychosomatic Medicine, 51(1), 41-58.
Krsmanovic, A., & Dean, M. (2021). How women suffering from Endometriosis disclose about their disorder at work. Health Communication, 37(8),
991–1003.
Li, Y., Wang, X., Lin, X., & Hajli, M. (2018). Seeking and sharing health information on social media: A net valence model and cross-cultural comparison.
Technological Forecasting and Social Change, 116(1), 18–40.
Malik, S. H., & Coulson, N. S. (2008). Computer-mediated infertility support groups: An exploratory study of online experiences. Patient Education and
Counseling, 73(1), 105–113.
Marki, G., Vasarhelyi, D., & Rigo, A. (2022). Challenges of and possible solutions for living with Endometriosis: A qualitative study. BMC Women's
Health, 22(20), 1-11.
Mirabolghasemi, M., & Iahad, N. A. (2017). Cancer patients on Facebook: A theoretical framework. 14th International Conference on Social
Implications of Computers in Developing Countries (ICT4D), May 2017, Yogyakarta, Indonesia (pp. 718-717). HAL open science.
Moradi, M., Parker, M., Sneddon, A., Lopez, V., & Ellwood, D. (2014). Impact of Endometriosis on women’s lives: A qualitative study. BMC Women’s
Health, 14(123), 1-12.
Nadkarni, A., & Hofmann, S. G. (2012). Why do people use Facebook? Personality and Individual Differences, 51(3), 143-149.
Oh, H. J., Lauckner, C., Boehmer, J., Fewins-Bliss, R., & Li, K. (2013). Facebooking for health: An examination into the solicitation and effects of health-
related social support on social networking sites. Computers in Human Behavior, 19(5), 1071-1080.
Pickles, T., Ruether, J. D., Weir, L., Carlson, L., Jakulj, F., & SCRN Communication Team (2007). Psychosocial barriers to active surveillance for the
management of early prostate cancer and a strategy for increased acceptance. BJU international, 100(3), 544–551.
Palant, A., & Himmel, W. (2019). Are there also negative effects of social support? A qualitative study of patients with inflammatory bowel disease. BMJ
Open, 9(1), e011641.
Pierret, J. (2003). The illness experience: State of knowledge and perspectives for research. Sociology of Health & Illness, 15(3), 4–11.
Preece, J. (2001). Sociability and usability in online communities: Determining and measuring success. Behaviour & Information Technology, 10(5),
347-356.
Roystonn, K., Vaingankar, J. A., Chua, B. Y., Sambasivam, R., Shafie, S., Jeyagurunathan, A., … Subramaniam, M. (2020). The public health impact and
policy implications of online support group use for mental health in Singapore: Cross-Sectional Survey. JMIR Mental Health, 7(8), e18114.
Seo, M., Kim, J., & Yang, H. (2016). Frequent interaction and fast feedback predict perceived social support: Using crawled and self-reported data of
Facebook users. Journal of Computer-Mediated Communication, 11(4), 181-197.
Shoebotham, A., & Coulson, N. S. (2016). Therapeutic affordances of online support group use in women with Endometriosis. Journal of Medical
Internet Research, 18(5), e109.
Sormunen, T., Karlgren, K., Aanesen, A., Fossum, B., & Westerbotn, M. (2020). The role of social media for persons affected by infertility. BMC Women’s
Health, 20(112), 1-8.
Tunin, R., Uziely, B., & Woloski‐Wruble, A. C. (2010). First degree relatives of women with breast cancer: Who's providing information and support and
who'd they prefer. Psycho‐Oncology, 19(4), 413-430.
Van den Haspel, K., Reddington, C., Healey, M., Li, R., Dior, U., & Cheng, C. (2022). The role of social media in management of individuals with
endometriosis: A cross‐sectional study. Australian and New Zealand Journal of Obstetrics and Gynaecology, 61(5), 701–706.
Whitney, M. L. (1998). Importance of lay organizations for coping with endometriosis. The Journal of Reproductive Medicine, 43(3), 331-334.
Wilson, S., Mogan, S., Coulson, N., & Tham, J. S. (2022). Exploring the role of a WhatsApp online community in supporting the needs of women living
with endometriosis in Malaysia: An interview study. Asian Women, 38(1), 59-76.
Wilson, S., Mogan, S., & Kaur, K. (2020). Understanding the role of Facebook to support women with Endometriosis: A Malaysian perspective.
International Journal of Nursing Practice, 16(4), e12833.
Wright, K. (2000). Perceptions of on‐line support providers: An examination of perceived homophily, source credibility, communication and social
support within on‐line support groups. Communication Quarterly, 48(1), 44-59.
Zhang, Y., He, D., & Sang, Y. (2013). Facebook as a platform for health information and communication: A case study of a diabetes group. Journal of
Medical System, 37(1), 9941.
Zhang, R. (2017). The stress-buffering effect of self-disclosure on Facebook: An examination of stressful life events, social support, and mental health
among college students. Computers in Human Behaviour, 75(1), 517-537.
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2023-06-30
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Social media support for women with endometriosis: A systematic review. (2023). Journal of Nusantara Studies (JONUS), 8(2), 289-315. https://doi.org/10.24200/jonus.vol8iss2pp289-315
