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

Russell, David; Spence, Naomi J.; Chase, Jo‐Ana D.; Schwartz, Tatum; Tumminello, Christa M.; Bouldin, Erin D.

doi:10.1016/j.ssmqr.2022.100177

Cited by 50 publications

(74 citation statements)

References 58 publications

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“…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.…”

Section: Resultsmentioning

confidence: 89%

“… 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 ).…”

Section: Resultsmentioning

confidence: 99%

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

Section: Resultsmentioning

confidence: 99%

“…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.…”

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

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

Mullard¹,

Kawalek²,

Parkin³

et al. 2023

Social Science & Medicine

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Section: Resultsmentioning

confidence: 89%

Section: Resultsmentioning

confidence: 99%

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

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

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

Mullard¹,

Kawalek²,

Parkin³

et al. 2023

Social Science & Medicine

View full text Add to dashboard Cite

“…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 ].…”

Section: Discussionmentioning

confidence: 99%

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

Wang

Sha

Liu

et al. 2022

IJERPH

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To explore the relationship between community support in tourist destinations and residents’ psychological well-being in the post-COVID-19 pandemic period, this study adopts the questionnaire survey method and draws the following conclusions by constructing a structural equation model: (1) perceived community support is very helpful for the psychological well-being of residents, (2) psychological resilience significantly mediates the relationship between perceived community support and residents’ psychological well-being, (3) the resident–tourist interaction mediates the relationship between perceived community support and residents’ psychological well-being, and (4) the resident–tourist interaction and psychological resilience play an ordered chain-mediating role between perceived community support and residents’ psychological well-being. These findings not only fill the gap in tourism research regarding destination-based community support studies but also provide a theoretical basis for maintaining residents’ psychological well-being in a given destination in the context of the COVID-19 pandemic. To a certain extent, improving residents’ well-being is helpful for promoting the healthy and sustainable development of tourism activities and realizing a “win-win” situation in which tourist destinations develop economically while promoting their residents’ living standards.

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Online support groups, social identity, and the health and wellbeing of adults with Long Covid: An interview study

Mills,

Drury,

Symons

et al. 2024

Community & Applied Soc Psy

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As many individuals with Long Covid are left without formal support, they have turned to online support groups for help. In a pre‐registered study, interviews were carried out with 21 adults with Long Covid to explore experiences of using online support groups, to understand whether participants felt these experiences influenced their health and wellbeing, and to identify whether group members developed a shared social identity. The reported benefits varied by the nature and size of the online support group: participants reported that smaller groups enabled a sense of community; occupation groups provided work‐specific support; and larger groups helped with symptom management. Interviewees reported that support groups validated members' experiences, made them feel less alone, and enhanced self‐efficacy by providing and offering support and enabling participants to learn new skills. However, negative outcomes were also reported, such as increased fear and reduced wellbeing. Shared identities developed based on mutual Long Covid experiences, shared values towards illness management, and pre‐existing identities. Reported experiences also varied between online support group size (large vs small); type (e.g., advocacy‐focused, yoga‐based, local or international); and platform (video‐ vs text‐based) and throughout the illness. Whilst this study recognises the necessity of medical treatment for Long Covid, we also recommended that individuals with Long Covid explore different support groups to find the most suitable group for them in terms of preferred group features, values towards illness management and enablement of social identities.

show abstract

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

Cited by 50 publications

References 58 publications

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

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

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

Online support groups, social identity, and the health and wellbeing of adults with Long Covid: An interview study

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