Preprint Article Version 1 Preserved in Portico This version is not peer-reviewed

The Development of an Experience Measure for an Online Digital Mental Health Community

Charlotte Mindel
,
Lily Mainstone-Cotton
,
Santiago de Ossorno Garcia
* ORCID logo ,
Aaron Sefi
* ,
Georgia Sugarman
,
Louisa Salhi
,
Holly Brick
,
Katherine Jackson
,
Terry Hanley
Version 1 : Received: 30 December 2021 / Approved: 31 December 2021 / Online: 31 December 2021 (12:34:46 CET)

A peer-reviewed article of this Preprint also exists.

Mindel, C.; Mainstone-Cotton, L.; de Ossorno Garcia, S.; Sefi, A.; Sugarman, G.; Salhi, L.; Brick, H.; Jackson, K.; Hanley, T. The Design and Development of an Experience Measure for a Peer Community Moderated Forum in a Digital Mental Health Service. Frontiers in Digital Health, 2022, 4. https://doi.org/10.3389/fdgth.2022.872404. Mindel, C.; Mainstone-Cotton, L.; de Ossorno Garcia, S.; Sefi, A.; Sugarman, G.; Salhi, L.; Brick, H.; Jackson, K.; Hanley, T. The Design and Development of an Experience Measure for a Peer Community Moderated Forum in a Digital Mental Health Service. Frontiers in Digital Health, 2022, 4. https://doi.org/10.3389/fdgth.2022.872404.

Abstract

Online digital mental health communities can contribute to users’ mental health positively and negatively. Yet the measurement of outcomes and impact relating to digital mental health communities is difficult to capture. In this paper we demonstrate the development of an online experience measure for a specific children and young people’s community inside a digital mental health service. The development is informed by three phases: (i) item reduction through Estimate-Talk-Estimate modified Delphi methods, (ii) user testing with participatory action research and (iii) a pilot within the digital service community to explore its use. Rounds of experts talks help to reduce the items. User experience workshops helped to inform the usability and appearance, wording, and purpose of the measure. Finally, the pilot results highlight completion rates, difference in scores for age and community roles and a preference to ‘relate to others’; as a mechanism of support. Outcomes frequently selected in the measure show the importance of certain aspects of the community, such as safety, connection, and non-judgment previously highlighted in the literature. Self-reported helpfulness scales like this one could be used as indicators of meaningful engagement within the community and its content but further research is required to ascertain its acceptability and validity. Phased approaches involving stakeholders and participatory action research enhances the development of digitally enabled measurement tools.

Keywords

Digital Mental Health community; Peer Online Community; Experience measure; Forums; User testing; Quality of Care; Measure design and development; Peer support; Affinity maps

Subject

Social Sciences, Psychology

Copyright: This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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