SOCIAL MEDIA SUPPORT FOR WOMEN WITH ENDOMETRIOSIS: A SYSTEMATIC REVIEW

In: Journal of Nusantara Studies (JONUS) · 2023 · vol. 8(2) , pp. 289–315 · doi:10.24200/jonus.vol8iss2pp289-315 · W4384208206
review OA: diamond CC0 ⤵ 1 in-corpus citation
AI-generated summary by claude@2026-06, 2026-06-06

This systematic review identified that endometriosis Facebook support groups educate women, connect them with others, and promote illness discussion, highlighting their potential benefits for support and education.

One-sentence paraphrase of the abstract; not a substitute for reading it. No clinical advice. How this works

AI-generated deep summary by claude@2026-06, 2026-06-06 · read from full text

This paper is a qualitative systematic review (guided by PRISMA-P) examining research on social media–based support groups for women with endometriosis, focusing particularly on Facebook. Across databases searched and screened, 36 full-text papers were thematically analysed, with the main reported finding that endometriosis Facebook support groups set expectations, provide education, and facilitate illness-management discussion by connecting women with others in similar situations. Three prominent themes were identified regarding (1) topics addressed by support groups, (2) the efficiency of virtual help communities for endometriosis patients, and (3) the forms of support women with endometriosis require, while the authors’ stated caveat is the reliance on the included studies reached via their screening/appraisal process rather than any new efficacy trial. This paper is centrally about endometriosis — it systematically reviews how women with endometriosis use and benefit from Facebook-based online support communities.

Read from the paper's body, not the abstract. Not a substitute for reading the paper. No clinical advice. How this works

Abstract

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 study on endometriosis online supportgroups. In contrast, studies examining the role of online support groups for other long-termconditions have been extensive. Addressing this gap, a systematic review of research on endometriosis support groups on social media and its efficacy were conducted. Methodology: Using a qualitative systematic review method and Meta-Analyses Protocols (PRISMA-P)., research database namely Research Gate, Springer, Wiley Online Library, Science Direct, Jstore, 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 found. 36 papers were selected following the appraisal stage and thematically analysed. Findings: Social media platform 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) 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, connects them with others in similar situations, and promotes 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. Cite as: Kaur, K., Ibrahim, N. A., & Wan Adnan, W. N. A. (2023). Social media support for women with endometriosis: A systematic review. Journal of Nusantara Studies, 8(1), 287-313. http://dx.doi.org/10.24200/jonus.vol8iss2pp287-313
Full text 11,408 characters · extracted from oa-doi-fallback · 3 sections · click to expand

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

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.

Text is read by the "Ask this paper" AI Q&A widget below. Extraction quality varies by source — PMC NXML preserves structure cleanly, OA-HTML may include some navigation residue, and OA-PDF can have broken hyphenation. The publisher copy (via DOI) is the canonical version.

My notes (saved in your browser only)

Ask this paper AI returns verbatim quotes from the full text · source: oa-doi-fallback

Answers must be backed by verbatim quotes from this paper's full text. Hallucinated quotes are dropped automatically; if no verbatim passage answers the question, we say so. How this works

Condition tags

endometriosis

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (45)

Cited by (1)

Source provenance

openalex
last seen: 2026-06-04T00:00:01.174412+00:00
License: CC0 · commercial use OK