Long-term condition self-management support in online communities: A meta-synthesis of qualitative papers

Journal of Medical Internet Research

Volumn 18, Issue 3, 2016, Pages

  Allen, Chris ^a   Vassilev, Ivaylo ^a   Kennedy, Anne ^a   Rogers, Anne ^a  

^a UNIVERSITY OF SOUTHAMPTON   (United Kingdom)

Author keywords

Chronic disease; Illness work; Long term conditions; Patient online communities; Qualitative meta synthesis; Self care; Self management; Social media; Social networks

Indexed keywords

CLINICAL STUDY; DATA BASE; DISEASE SIMULATION; DISSOCIATION; FRUSTRATION; HUMAN; MOBILIZATION; MODEL; NARRATIVE; PERSONAL EXPERIENCE; QUALITATIVE ANALYSIS; SELF CARE; SYNTHESIS; CHRONIC DISEASE; DISEASE MANAGEMENT; EMOTION; INTERNET; PEER GROUP; SELF HELP; SOCIAL SUPPORT; VERBAL COMMUNICATION;

CHRONIC DISEASE; DISEASE MANAGEMENT; EMOTIONS; HUMANS; INTERNET; NARRATION; PEER GROUP; SELF CARE; SELF-HELP GROUPS; SOCIAL SUPPORT;

EID: 84962045998     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.5260     Document Type: Article

References (74)

1. Rogers A, Vassilev I, Sanders C, Kirk S, Chew-Graham C, Kennedy A, et al. Social networks, work and network-based resources for the management of long-term conditions: a framework and study protocol for developing self-care support. Implement Sci 2011;6:56 [FREE Full text] [doi: 10.1186/1748-5908-6-56] [Medline: 21619695]
2. de Silva D. Helping People Help Themselves: A Review of the Evidence Considering Whether It Is Worthwhile to Support Self-Management. London: Health Foundation; 2011 May. URL: http://www.health.org.uk/sites/default/files/HelpingPeopleHelpThemselves.pdf [accessed 2015-10-13] [WebCite Cache ID 6cFDIbVt3]
3. Department of Health. Improving the Health and Well-Being of People with Long Term Conditions: World Class Services for People with Long Term Conditions-Information Tool for Commissioners. London: Department of Health; 2010. URL: http://www.yearofcare.co.uk/sites/default/files/pdfs/dh-improving%20the%20h%26wb%20of%20people%20with%20LTCs.pdf [accessed 2015-10-13] [WebCite Cache ID 6cFfTf6uf]
4. Deperatment of Health. 2015. Policy paper: 2010 to 2015 goverment policy: long term health conditions URL: https://www.gov.uk/government/publications/2010-to-2015-government-policy-long-term-health-conditions/2010-to-2015-government-policy-long-term-health-conditions [accessed 2015-10-13] [WebCite Cache ID 6cFBtfPbk2015]
5. Department of Health. Self-Care: A Real Choice. London: Department of Health; 2005. URL: http://webarchive. nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod-consum-dh/groups/dh-digitalassets/@dh/@en/documents/digitalasset/dh-4101702.pdf [accessed 2015-10-13] [WebCite Cache ID 6cFgDhBZw2005]
6. Wanless D. Securing Good Health for the Whole Population. London: Department of Health; 2004 Feb. URL: http://webarchive.nationalarchives.gov.uk/20130129110402/http://www.hm-treasury.gov.uk/d/Wanless04-summary.pdf [accessed 2015-10-19] [WebCite Cache ID 6cOfGtscp]
7. Vassilev I, Rogers A, Sanders C, Kennedy A, Blickem C, Protheroe J, et al. Social networks, social capital and chronic illness self-management: a realist review. Chronic Illn 2011 Mar;7(1):60-86. [doi: 10.1177/1742395310383338] [Medline: 20921033]
8. Rogers A, Brooks H, Vassilev I, Kennedy A, Blickem C, Reeves D. Why less may be more: a mixed methods study of the work and relatedness of 'weak ties' in supporting long-term condition self-management. Implement Sci 2014;9:19 [FREE Full text] [doi: 10.1186/1748-5908-9-19] [Medline: 24524253]
9. Vassilev I, Rogers A, Blickem C, Brooks H, Kapadia D, Kennedy A, et al. Social networks, the 'work' and work force of chronic illness self-management: a survey analysis of personal communities. PLoS One 2013 Apr;8(4):e59723 [FREE Full text] [doi: 10.1371/journal.pone.0059723] [Medline: 23565162]
10. Reeves D, Blickem C, Vassilev I, Brooks H, Kennedy A, Richardson G, et al. The contribution of social networks to the health and self-management of patients with long-term conditions: a longitudinal study. PLoS One 2014 Jun;9(6):e98340 [FREE Full text] [doi: 10.1371/journal.pone.0098340] [Medline: 24887107]
11. Corbin J, Strauss A. Managing chronic illness at home: Three lines of work. Qual Sociol 1985;8(3):224-247. [doi: 10.1007/BF00989485]
12. Bury M. Chronic illness as biographical disruption. Sociol Health & Illness 1982 Jul;4(2):167-182. [doi: 10.1111/1467-9566.ep11339939]
13. Ellison N, Steinfield C, Lampe C. The benefits of Facebook "friends": social capital and college students' use of online social network sites. J Comput-Mediat Comm 2007;12(4):1143-1168. [doi: 10.1111/j.1083-6101.2007.00367.x]
14. Donath J, Boyd D. Public displays of connection. Bt Technol J 2004 Oct;22(4):71-82. [doi: 10.1023/B:BTTJ.0000047585.06264.cc]
15. Van Dijck J. The Culture of Connectivity. New York: Oxford University Press; 2013.
16. Donarth J. Signals in social supernets. J Comput-Mediat Comm 2007;13(1):231-251. [doi: 10.1111/j.1083-6101.2007.00394.x]
17. Coulson NS. Sharing, supporting and sobriety: a qualitative analysis of messages posted to alcohol-related online discussion forums in the United Kingdom. J Subst Use 2014 Mar;19(1-2):176-180. [doi: 10.3109/14659891.2013.765516]
18. Ziebland S, Wyke S. Health and illness in a connected world: how might sharing experiences on the internet affect people's health? Milbank Q 2012 Jun;90(2):219-249 [FREE Full text] [doi: 10.1111/j.1468-0009.2012.00662.x] [Medline: 22709387]
19. Anderson M. Pew Research Center. 2015 Oct 29. Technology device ownership URL: http://www.pewinternet.org/2015/10/29/technology-device-ownership-2015/?beta=true&utm-expid=53098246-2.Lly4CFSVQG2lphsg-KopIg. 1&utm-referrer=http%3A%2F%2Fwww.pewinternet.org%2Fcategory%2Fpublications%2Freport%2F [accessed 2015-12-07] [WebCite Cache ID 6db69f4G9]
20. Smith A. Pew Research Center. 2015 Apr 01. US smartphone use in 2015 URL: http://www.pewinternet.org/2015/04/01/us-smartphone-use-in-2015/?beta=true&utm-expid=53098246-2.Lly4CFSVQG2lphsg-KopIg. 1&utm-referrer=http%3A%2F%2Fwww.pewinternet.org%2F2015%2F04%2F01%2Fu-s-smartphone-use-in-2015%2Fpi-2015-04-01-smartphones-03%2F [accessed 2015-12-07] [WebCite Cache ID 6dbAbEAg7]
21. Vassilev I, Rogers A, Kennedy A, Koetsenruijter J. The influence of social networks on self-management support: a metasynthesis. BMC Public Health 2014;14:719 [FREE Full text] [doi: 10.1186/1471-2458-14-719] [Medline: 25023948]
22. Paterson B, Thorne S, Canam C, Jillings C. Meta-Study of Qualitative Health Research: a Practical Guide to Meta-Analysis and Meta-Synthesis. Thousand Oaks, CA: Sage Publications; 2001.
23. Britten N, Campbell R, Pope C, Donovan J, Morgan M, Pill R. Using meta ethnography to synthesise qualitative research: a worked example. J Health Serv Res Policy 2002 Oct;7(4):209-215. [doi: 10.1258/135581902320432732] [Medline: 12425780]
24. Attard A, Coulson NS. A thematic analysis of patient communication in Parkinson's disease online support group discussion forums. Comput Hum Behav 2012 Mar;28(2):500-506. [doi: 10.1016/j.chb.2011.10.022]
25. Barker KK. Electronic support groups, patient-consumers, and medicalization: the case of contested illness. J Health Soc Behav 2008 Mar 01;49(1):20-36. [doi: 10.1177/002214650804900103]
26. Brown S, Altice FL. Self-management of buprenorphine/naloxone among online discussion board users. Subst Use Misuse 2014 Jun;49(8):1017-1024. [doi: 10.3109/10826084.2014.888449] [Medline: 24779501]
27. Coursaris CK, Liu M. An analysis of social support exchanges in online HIV/AIDS self-help groups. Comput Hum Behav 2009 Jul;25(4):911-918. [doi: 10.1016/j.chb.2009.03.006]
28. Greene JA, Choudhry NK, Kilabuk E, Shrank WH. Online social networking by patients with diabetes: a qualitative evaluation of communication with Facebook. J Gen Intern Med 2011 Mar;26(3):287-292 [FREE Full text] [doi: 10.1007/s11606-010-1526-3] [Medline: 20945113]
29. Hadert A, Rodham K. The invisible reality of arthritis: a qualitative analysis of an online message board. Musculoskeletal Care 2008 Sep;6(3):181-196. [doi: 10.1002/msc.131] [Medline: 18570188]
30. Kazmer MM, Lustria MLA, Cortese J, Burnett G, Kim J, Ma J, et al. Distributed knowledge in an online patient support community: authority and discovery. J Assn Inf Sci Tec 2014 Feb 26;65(7):1319-1334. [doi: 10.1002/asi.23064]
31. Kirk S, Milnes L. An exploration of how young people and parents use online support in the context of living with cystic fibrosis. Health Expect 2015 Feb 17:e1. [doi: 10.1111/hex.12352] [Medline: 25691209]
32. Loane SS, D'Alessandro S. Peer-to-peer value through social capital in an online motor neuron disease community. J Nonprofit Pub Sect Mark 2013 Apr;25(2):164-185. [doi: 10.1080/10495142.2013.785736]
33. Matura LA, McDonough A, Aglietti LM, Herzog JL, Gallant KA. A virtual community: concerns of patients with pulmonary hypertension. Clin Nurs Res 2013 May;22(2):155-171. [doi: 10.1177/1054773812462867] [Medline: 23093554]
34. Mazzoni D, Cicognani E. Sharing experiences and social support requests in an Internet forum for patients with systemic lupus erythematosus. J Health Psychol 2014 May;19(5):689-696. [doi: 10.1177/1359105313477674] [Medline: 23479300]
35. Merolli M, Gray K, Martin-Sanchez F. Therapeutic affordances of social media: emergent themes from a global online survey of people with chronic pain. J Med Internet Res 2014 Dec;16(12):e284 [FREE Full text] [doi: 10.2196/jmir.3494] [Medline: 25533453]
36. Mo PK, Coulson NS. Are online support groups always beneficial? A qualitative exploration of the empowering and disempowering processes of participation within HIV/AIDS-related online support groups. Int J Nurs Stud 2014 Jul;51(7):983-993. [doi: 10.1016/j.ijnurstu.2013.11.006] [Medline: 24342449]
37. Rodham K, McCabe C, Blake D. Seeking support: An interpretative phenomenological analysis of an Internet message board for people with Complex Regional Pain Syndrome. Psychol Health 2009 Jul;24(6):619-634. [doi: 10.1080/08870440802563245] [Medline: 20205016]
38. van Berkel JJ, Lambooij MS, Hegger I. Empowerment of patients in online discussions about medicine use. BMC Med Inform Decis Mak 2015 Apr;15:24 [FREE Full text] [doi: 10.1186/s12911-015-0146-6] [Medline: 25888825]
39. van Uden-Kraan C, Drossaert C, Taal E, Lebrun C, Drossaers-Bakker K, Smit W, et al. Coping with somatic illnesses in online support groups: do the feared disadvantages actually occur? Comput Hum Behav 2008 Mar;24(2):309-324. [doi: 10.1016/j.chb.2007.01.014]
40. van Uden-Kraan CF, Drossaert CH, Taal E, Shaw BR, Seydel ER, van de Laar MA. Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qual Health Res 2008 Mar;18(3):405-417. [doi: 10.1177/1049732307313429] [Medline: 18235163]
41. Wentzer HS, Bygholm A. Narratives of empowerment and compliance: studies of communication in online patient support groups. Int J Med Inform 2013 Dec;82(12):e386-e394. [doi: 10.1016/j.ijmedinf.2013.01.008] [Medline: 23523082]
42. Willis E. The making of expert patients: the role of online health communities in arthritis self-management. J Health Psychol 2014 Dec;19(12):1613-1625. [doi: 10.1177/1359105313496446] [Medline: 23988679]
43. Zhang Y, He D, Sang Y. Facebook as a platform for health information and communication: a case study of a diabetes group. J Med Syst 2013 Jun;37(3):9942. [doi: 10.1007/s10916-013-9942-7] [Medline: 23588823]
44. Critical Appraisal Skills Programme (CASP). 2013. Qualitative research checklist URL: http://media.wix.com/ugd/dded87-29c5b002d99342f788c6ac670e49f274.pdf [accessed 2015-10-13] [WebCite Cache ID 6cFCTgUnn]
45. Kozinets R. Netnography: Doing Ethnographic Research Online. London: Sage Publications Ltd; 2013.
46. Hewson C, Buchanan T, Brown I, Coulson NS, Hagger-Johnson G, Joinson A. Ethics Guidelines for Internet-mediated Research. Leicester: British Psychological Society; 2013. URL: http://www.bps.org.uk/system/files/Public%20files/inf206-guidelines-for-internet-mediated-research.pdf [accessed 2015-10-13] [WebCite Cache ID 6cFg8muF5]
47. Suler J. The online disinhibition effect. Cyberpsychol Behav 2004 Jun;7(3):321-326. [doi: 10.1089/1094931041291295] [Medline: 15257832]
48. Suler J. Psychology of the Digital Age. First ed. Clays: Cambridge University Press; 2016.
49. Borzekowski DL, Schenk S, Wilson JL, Peebles R. e-Ana and e-Mia: A content analysis of pro-eating disorder Web sites. Am J Public Health 2010 Aug;100(8):1526-1534. [doi: 10.2105/AJPH.2009.172700] [Medline: 20558807]
50. Biddle L, Donovan J, Hawton K, Kapur N, Gunnell D. Suicide and the internet. BMJ 2008 Apr 12;336(7648):800-802 [FREE Full text] [doi: 10.1136/bmj.39525.442674.AD] [Medline: 18403541]
51. Brotsky SR, Giles D. Inside the "pro-ana" community: a covert online participant observation. Eat Disord 2007 Mar;15(2):93-109. [doi: 10.1080/10640260701190600] [Medline: 17454069]
52. Fox N, Ward K, O'Rourke A. Pro-anorexia, weight-loss drugs and the internet: an "anti-recovery" explanatory model of anorexia. Sociol Health Illn 2005 Nov;27(7):944-971. [doi: 10.1111/j.1467-9566.2005.00465.x] [Medline: 16313524]
53. Krishna N, Fischer B, Miller M, Register-Brown K, Patchan K, Hackman A. The role of social media networks in psychotic disorders: a case report. Gen Hosp Psychiat 2013 Sep;35(5):576.e1-576.e2. [doi: 10.1016/j.genhosppsych.2012.10.006]
54. Jelenchick LA, Eickhoff JC, Moreno MA. "Facebook depression?" social networking site use and depression in older adolescents. J Adolesc Health 2013 Jan;52(1):128-130. [doi: 10.1016/j.jadohealth.2012.05.008] [Medline: 23260846]
55. Rosen L, Whaling K, Rab S, Carrier L, Cheever N. Is Facebook creating "iDisorders"? The link between clinical symptoms of psychiatric disorders and technology use, attitudes and anxiety. Comput Hum Behav 2013 May;29(3):1243-1254. [doi: 10.1016/j.chb.2012.11.012]
56. Weitzman ER, Cole E, Kaci L, Mandl KD. Social but safe? Quality and safety of diabetes-related online social networks. J Am Med Inform Assoc 2011 May 1;18(3):292-297 [FREE Full text] [doi: 10.1136/jamia.2010.009712] [Medline: 21262920]
57. Moses RE, McNeese LG, Feld LD, Feld AD. Social media in the health-care setting: benefits but also a minefield of compliance and other legal issues. Am J Gastroenterol 2014 Aug;109(8):1128-1132. [doi: 10.1038/ajg.2014.67] [Medline: 24980878]
58. Denecke K, Bamidis P, Bond C, Gabarron E, Househ M, Lau AY, et al. Ethical issues of social media usage in healthcare. Yearb Med Inform 2015 Aug 13;10(1):137-147 [FREE Full text] [doi: 10.15265/IY-2015-001] [Medline: 26293861]
59. Fox S. Pew Research Center. 2011 May 12. The social life of health information URL: http://www.pewinternet.org/2011/05/12/the-social-life-of-health-information-2011/ [accessed 2015-10-13] [WebCite Cache ID 6cFgioFoH]
60. Barak A, Boniel-Nissim M, Suler J. Fostering empowerment in online support groups. Comput Hum Behav 2008 Sep;24(5):1867-1883. [doi: 10.1016/j.chb.2008.02.004]
61. Bartlett YK, Coulson NS. An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. Patient Educ Couns 2011 Apr;83(1):113-119. [doi: 10.1016/j.pec.2010.05.029] [Medline: 20599338]
62. Edwards M, Wood F, Davies M, Edwards A. 'Distributed health literacy': longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long-term health condition. Health Expect 2015 Oct;18(5):1180-1193. [doi: 10.1111/hex.12093] [Medline: 23773311]
63. Cobb NK, Graham AL, Abrams DB. Social network structure of a large online community for smoking cessation. Am J Public Health 2010 Jul;100(7):1282-1289 [FREE Full text] [doi: 10.2105/AJPH.2009.165449] [Medline: 20466971]
64. van Mierlo T. The 1% rule in four digital health social networks: an observational study. J Med Internet Res 2014 Feb;16(2):e33 [FREE Full text] [doi: 10.2196/jmir.2966] [Medline: 24496109]
65. Lester J, Finegan Y, Hoch D. Patient Safety & Quality Healthcare. 2004. How online patient networks can enhance quality and reduce errors URL: http://psqh.com/octdec04/lesterfineganhoch.html [accessed 2015-10-13] [WebCite Cache ID 6cFgRn70Y2004]
66. McShane L, Greenwell K, Corbett S, Walker R. Developing a long-term condition's information service in collaboration with third sector organisations. Health Info Libr J 2014 Jun;31(2):106-115. [doi: 10.1111/hir.12064] [Medline: 24942318]
67. Blickem C, Bower P, Protheroe J, Kennedy A, Vassilev I, Sanders C, et al. The role of information in supporting self-care in vascular conditions: a conceptual and empirical review. Health Soc Care Community 2011 Sep;19(5):449-459. [doi: 10.1111/j.1365-2524.2010.00975.x] [Medline: 21158998]
68. Titmuss RM. The Gift Relationship: From Human Blood to Social Policy. Oxford: George Allen & Unwin; 1970.
69. Barkhuus L, Polichar VE. Empowerment through seamfulness: smart phones in everyday life. Pers Ubiquit Comput 2010 Dec 2;15(6):629-639. [doi: 10.1007/s00779-010-0342-4]
70. Gallant MP. The influence of social support on chronic illness self-management: a review and directions for research. Health Educ Behav 2003 Apr 01;30(2):170-195. [doi: 10.1177/1090198102251030]
71. Kraut R, Patterson M, Lundmark V, Kiesler S, Mukophadhyay T, Scherlis W. Internet paradox: a social technology that reduces social involvement and psychological well-being? Am Psychol 1998;53(9):1017-1031. [doi: 10.1037/0003-066X.53.9.1017]
72. Kraut R, Kiesler S, Boneva B, Cummings J, Helgeson V, Crawford A. Internet paradox revisited. J Social Isssues 2002 Jan;58(1):49-74. [doi: 10.1111/1540-4560.00248]
73. Kuss DJ, Griffiths MD. Online social networking and addiction-a review of the psychological literature. Int J Environ Res Public Health 2011 Sep;8(9):3528-3552 [FREE Full text] [doi: 10.3390/ijerph8093528] [Medline: 22016701]
74. Turkle S. Alone Together: Why We Expect More from Technology and Less from Each Other. New York: Basic Books; 2012.