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Accepted for/Published in: Journal of Medical Internet Research

Date Submitted: Jan 26, 2018
Open Peer Review Period: Jan 27, 2018 - May 29, 2018
Date Accepted: May 29, 2018
(closed for review but you can still tweet)

The final, peer-reviewed published version of this preprint can be found here:

Informal Caregivers’ Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study

Vaughan C, Trail TE, Mahmud A, Dellva S, Tanielian T, Friedman E

Informal Caregivers’ Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study

J Med Internet Res 2018;20(8):e257

DOI: 10.2196/jmir.9895

PMID: 30154074

PMCID: 6134228

Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.

Informal Caregivers’ Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study

  • Christine Vaughan; 
  • Thomas E Trail; 
  • Ammarah Mahmud; 
  • Stephanie Dellva; 
  • Terri Tanielian; 
  • Esther Friedman

Background:

Web-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions.

Objective:

In this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans.

Methods:

This was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention.

Results:

Survey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network’s resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers.

Conclusions:

These findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers’ needs for emotional support.


 Citation

Please cite as:

Vaughan C, Trail TE, Mahmud A, Dellva S, Tanielian T, Friedman E

Informal Caregivers’ Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study

J Med Internet Res 2018;20(8):e257

DOI: 10.2196/jmir.9895

PMID: 30154074

PMCID: 6134228

Per the author's request the PDF is not available.

© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.