Life transitions and online health communities: reflecting on adoption, use, and disengagement

Online health communities are places where people can come together in order to exchange social support at a particular point in an individual's life. There are, however, relatively few accounts that look across multiple communities across the lifespan. In this paper, we reflect on four case studies of research on different online health communities in order to identify patterns in how individuals selectively adopt, use, and disengage from these communities throughout their lives. We argue that users leaving communities is not necessarily a failing of the site's design or purpose; rather, it is a logical reaction to changing life circumstances. In characterizing this pattern, we contribute a set of implications for design and management that bear consideration by online community designers, developers, moderators, and end users. Ultimately this may lead to a smoother transition from community to community and ensure that social support needs are being met more consistently in response to changing life circumstances.

[1]  Mitch Golant,et al.  Benefits and challenges experienced by professional facilitators of online support groups for cancer survivors , 2009, Psycho-oncology.

[2]  Qimei Chen,et al.  Internet Community Group Participation: Psychosocial Benefits for Women with Breast Cancer , 2005, J. Comput. Mediat. Commun..

[3]  L. Berkman,et al.  From social integration to health: Durkheim in the new millennium. , 2000, Social science & medicine.

[4]  Michael Massimi,et al.  Exploring remembrance and social support behavior in an online bereavement support group , 2013, CSCW.

[5]  A. Broom.  Virtually He@lthy: The Impact of Internet Use on Disease Experience and the Doctor-Patient Relationship , 2005, Qualitative health research.

[6]  Jenny Preece,et al.  Online Communities: Designing Usability and Supporting Sociability , 2000 .

[7]  Bret R. Shaw,et al.  Empowering Processes and Outcomes of Participation in Online Support Groups for Patients With Breast Cancer, Arthritis, or Fibromyalgia , 2008, Qualitative health research.

[8]  M. Ory,et al.  Outcomes of online support and resources for cancer survivors: a systematic literature review. , 2012, Patient education and counseling.

[9]  M. T. Høybye,et al.  Online interaction. Effects of storytelling in an internet breast cancer support group , 2005 .

[10]  Brian Cooper,et al.  Bereavement Support Groups: Timing of Participation and Reasons for Joining , 2001 .

[11]  W. Pratt,et al.  Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians , 2011, Journal of medical Internet research.

[12]  Jean Hartley,et al.  Case study research , 2004 .

[13]  Alcides Velasquez,et al.  Motivations to participate in online communities , 2010, CHI.

[14]  Charles H. Tator,et al.  Sport concussion education and prevention. , 2012 .

[15]  J. Grube,et al.  Developing an optimal match within online communities: an exploration of CMC support communities and traditional support , 2001 .

[16]  Briege M Lagan,et al.  Internet use in pregnancy informs women's decision making: a web-based survey. , 2010, Birth.

[17]  Anne-Grete Sandaunet.  A Space for Suffering? Communicating Breast Cancer in an Online Self-Help Context , 2008, Qualitative health research.

[18]  R Dawn Comstock,et al.  Concussion research: a public health priority , 2011, Injury Prevention.

[19]  Alejandro R Jadad,et al.  What patients with cancer want to know about pain: a qualitative study. , 2008, Journal of pain and symptom management.

[20]  Janet F Eary,et al.  Sport Concussion Assessment Tool – 2: Baseline Values for High School Athletes , 2012, British Journal of Sports Medicine.

[21]  Bret R. Shaw,et al.  Experiences of Women with Breast Cancer: Exchanging Social Support over the CHESS Computer Network , 2000, Journal of health communication.

[22]  B. F. Sharf.  Communicating breast cancer on-line: support and empowerment on the Internet. , 1997, Women & health.

[23]  Jennifer Preece,et al.  A multilevel analysis of sociability, usability, and community dynamics in an online health community , 2005, TCHI.

[24]  L. Marlow,et al.  Peer-to-Peer Communication, Cancer Prevention, and the Internet , 2009, Journal of health communication.

[25]  Lars Engebretsen,et al.  From consensus to action: knowledge transfer, education and influencing policy on sports concussion , 2013, British Journal of Sports Medicine.

[26]  H. Winefield,et al.  Support provision and emotional work in an Internet support group for cancer patients. , 2006, Patient education and counseling.

[27]  Barbara L. Ley.  Vive Les Roses!: The Architecture of Commitment in an Online Pregnancy and Mothering Group , 2007, J. Comput. Mediat. Commun..

[28]  Sumaira Malik,et al.  Coping with infertility online: an examination of self-help mechanisms in an online infertility support group. , 2010, Patient education and counseling.

[29]  Benjamin H. Gottlieb,et al.  Social support measurement and intervention: A guide for health and social scientists. , 2000 .

[30]  K. Wright.  Social support within an on-line cancer community: an assessment of emotional support, perceptions of advantages and disadvantages, and motives for using the community from a communication perspective , 2002 .

[31]  P. Drentea,et al.  Social capital and social support on the web: the case of an internet mother site. , 2005, Sociology of health & illness.

[32]  Petter Bae Brandtzæg,et al.  User loyalty and online communities: why members of online communities are not faithful , 2008, INTETAIN '08.

[33]  Holly Witteman.  Apomediation and Women's Choices of Birth Place and Attendants , 2009 .

[34]  J. Powell,et al.  Primary care Health related virtual communities and electronic support groups : systematic review of the effects of online peer to peer interactions , 2004 .

[35]  R. P. Vilhauer,et al.  A qualitative study of the experiences of women with metastatic breast cancer , 2008, Palliative and Supportive Care.

[36]  Debra Lauterbach,et al.  It's not that i don't have problems, i'm just not putting them on facebook: challenges and opportunities in using online social networks for health , 2011, CSCW.

[37]  Margareta Larsson,et al.  A descriptive study of the use of the Internet by women seeking pregnancy-related information. , 2009, Midwifery.

[38]  Mark S. Ackerman,et al.  Collaborative help in chronic disease management: supporting individualized problems , 2012, CSCW.

[39]  Mareen Weber,et al.  Sport concussion knowledge in the UK general public. , 2012, Archives of clinical neuropsychology : the official journal of the National Academy of Neuropsychologists.

[40]  S. Shyam Sundar,et al.  Using interface cues in online health community boards to change impressions and encourage user contribution , 2011, CHI.

[41]  J. Whitney.  Case Study Research , 1999 .

[42]  M. Swan.  Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking , 2009, International journal of environmental research and public health.

[43]  M. T. Høybye,et al.  Online interaction. Effects of storytelling in an internet breast cancer support group , 2005, Psycho-oncology.

[44]  Paul McCrory,et al.  iSupport: do social networking sites have a role to play in concussion awareness? , 2010, Disability and rehabilitation.

[45]  P. Nicassio,et al.  Social Support Measurement and Intervention: A Guide for Health and Social Scientists , 2002 .