Online peer support groups for family caregivers: are they reaching the caregivers with the greatest needs?

Background Online peer support groups are an increasingly common venue for caregivers supporting disabled family members to exchange informational, emotional, and instrumental support. We know very little, however, about who uses these groups and whether they are reaching those with the greatest needs. Objective To examine whether caregiving factors (ie, caregiving demands and strain, competing demands, access to support and services, and other caregiving characteristics) are related to online community support use and intensity of use. Method This study used data from a new survey of family caregivers who provide care to disabled military veterans. We used logistic regression models to examine the likelihood of online community support group usage and intensity of use as a function of a variety of caregiving factors. Results Those with greater caregiving demands were more likely to use online peer support. Specifically, helping the care recipient with more activities was associated with a statistically significantly greater likelihood of visiting an online community support group. Caring for a veteran with a neurological or psychological condition, which, in prior work, suggests more complex care needs, was also positively and significantly related to visiting an online community support group. Hours of care and several other caregiving factors were related to intensity of use. Conclusions We show that family caregivers with the most caregiving demands are most engaged with online support communities. This suggests that online communities could be used to support the most vulnerable family caregivers. The implications of this work for online support systems are discussed.

[1]  Scott D. Wright,et al.  The Assessment of Support Group Experiences by Caregivers of Dementia Patients , 1987 .

[2]  Thomas E. Trail,et al.  Hidden Heroes: America's Military Caregivers , 2014 .

[3]  C. V. van Uden-Kraan,et al.  Self-Reported Differences in Empowerment Between Lurkers and Posters in Online Patient Support Groups , 2008, Journal of medical Internet research.

[4]  Stanley Lemeshow,et al.  Applied Logistic Regression, Second Edition , 1989 .

[5]  Martin P J van Boxtel,et al.  A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise? , 2016, Maturitas.

[6]  Hayden B. Bosworth,et al.  Caregiver Burden and Psychological Distress in Partners of Veterans with Chronic Posttraumatic Stress Disorder , 2002, Journal of traumatic stress.

[7]  Jonathon N. Cummings,et al.  Internet Paradox Revisited , 2002 .

[8]  M. Novak,et al.  Application of a multidimensional caregiver burden inventory. , 1989, The Gerontologist.

[9]  B. Harrison,et al.  Caregiver burden among dementia patient caregivers: A review of the literature , 2008, Journal of the American Academy of Nurse Practitioners.

[10]  Jan Michael Bauer,et al.  Impacts of Informal Caregiving on Caregiver Employment, Health, and Family , 2015, SSRN Electronic Journal.

[11]  C E Degeneffe,et al.  Family caregiving and traumatic brain injury. , 2001, Health & social work.

[12]  Henry Brodaty,et al.  Family caregivers of people with dementia , 2009, Dialogues in clinical neuroscience.

[13]  D. Gustafson,et al.  Lurking as an Active Participation Process: A Longitudinal Investigation of Engagement with an Online Cancer Support Group , 2014, Health communication.

[14]  J. Wolff,et al.  Caregivers of frail elders: updating a national profile. , 2006, The Gerontologist.

[15]  Katelyn Y. A. McKenna,et al.  Coming Out in the Age of the Internet: Identity “Demarginalization” Through Virtual Group Participation , 1998 .

[16]  Terri Tanielian,et al.  Invisible Wounds of War. Psychological and Cognitive Injuries, Their Consequences, and Services to Assist Recovery , 2008 .

[17]  Annie Y. S. Lau,et al.  The influence of social networking sites on health behavior change: a systematic review and meta-analysis , 2015, J. Am. Medical Informatics Assoc..

[18]  Richard Schulz,et al.  Families Caring for an Aging America , 2016 .

[19]  Louise Demers,et al.  Components and Outcomes of Internet-Based Interventions for Caregivers of Older Adults: Systematic Review , 2017, Journal of medical Internet research.

[20]  David W. Hosmer,et al.  Applied Logistic Regression , 1991 .