Support amid uncertainty: Long COVID illness experiences and the role of online communities

Towards evidence-based and inclusive models of peer support for long covid: A hermeneutic systematic review

“…The study presents the complexity and diversity of varying experiences within peer support, highlighting the dichotomy of expectations, needs and impacts. For example, whilst shared learning around management strategies were valued by some participants, others felt, similar to the participants in Russell et al, 2022 article, that the unregulated nature allowed for potentially harmful content to circulate and burdened members to determine for themselves the safety of recommendations. Conflicting views were also expressed around the psychological impact of utilising social media based peer support with some seeking it in times of low mood and others actively avoiding it.…”

“… Themes Papers included in theme Number of papers Peer support and Long COVID 2 systematic reviews ( Grant et al, 2021 ; Sokol and Fisher, 2016 ). 1 narrative review ( Callard and Perego, 2021 ), 1 service review ( Hope et al, 2021 ) 4 Qualitative studies ( Day, 2022 ; Mikal et al, 2021 ; Rushforth et al, 2021 ;; Russell et al, 2022 ) 1 Voluntary and Community Sector (VCS) report ( Graham, J. T., and Rutherford, K., 2016 ) Total: 9 Peer support in other chronic conditions 10 Systematic reviews ( Berg et al, 2021 ; Dale et al, 2012 ; Eysenbach et al, 2004 ; Gatlin et al, 2017 ; Kowitt et al, 2018 ; Lloyd-Evans et al, 2014 ; Lyons et al, 2021 ; Odgers-Jewell et al, 2017 ; Sokol and Fisher, 2016 ; Thompson et al, 2022 ), 4 scoping reviews ( Barclay and Hilton, 2019 ; Carter et al, 2020 ; Grant et al, 2021 , 2021g, 2021rd-Repål, 2021). 3 narrative reviews ( Carr, 2016 ; Heisler, 2007 ; Tang and Fisher, 2021 ), 5 qualitative papers ( ChemtobCaron et al, 2018 ; Haas et al, 2013 ; Litchman et al, 2018 ; Monroe et al, 2017 ; Power and Hegarty, 2010 ).…”

“…4 Qualitative studies ( Day, 2022 ; Mikal et al, 2021 ; Rushforth et al, 2021 ;; Russell et al, 2022 )…”

“…Indeed, Russell et al (2022) highlight in their qualitative interviews with 20 people living with Long COVID, that many had negative first encounters with healthcare professionals leaving them frustrated and further traumatised by their experience. For this group, the authors note how online peer support helped them to gain recognition of their condition as well as develop strategies to educate healthcare professionals that were, in the early days of the condition, reluctant to listen to them.…”

Exploring the Relationship between Perceived Community Support and Psychological Well-Being of Tourist Destinations Residents

“…In addition, traditional communities were chosen for this study, but in practice, online communities will attract more people because of the emergence of the COVID-19 pandemic. Russell et al (2022) verified the relevant impact of the social relationships between healthcare personnel and online community members [ 79 ]. In addition, community members are considered to be part of the value chain, and many scholars have studied the influencing mechanisms of social support, belongingness, and value co-creation in online communities [ 80 ].…”