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Cited by 26Long-Term Effects of COVID-19Digital Mental Health InterventionsMobile Health and mHealth Applications

Digital Peer-Supported Self-Management Intervention Codesigned by People With Long COVID: Mixed Methods Proof-of-Concept Study

Open access
Wright, Hayley, Turner, Andrew, Ennis, Stuart, Percy, Carol, Loftus, Garry, Clyne, Wendy, Matouskova, Gabriela, Martin, Faith·2022·JMIR Formative Research
DOI 10.2196/41410PMC PMC9578526
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Abstract

Background: There are around 1.3 million people in the United Kingdom with the devastating psychological, physical, and cognitive consequences of long COVID (LC). UK guidelines recommend that LC symptoms be managed pragmatically with holistic support for patients’ biopsychosocial needs, including psychological, emotional, and physical health. Self-management strategies, such as pacing, prioritization, and goal setting, are vital for the self-management of many LC symptoms. Objective: This paper describes the codevelopment and initial testing of a digital intervention combining peer support with positive psychology approaches for self-managing the physical, emotional, psychological, and cognitive challenges associated with LC. The objectives of this study were to (1) codesign an intervention with and for people with LC; (2) test the intervention and study methods; (3) measure changes in participant well-being, self-efficacy, fatigue, and loneliness; and (4) understand the types of self-management goals and strategies used by people with LC. Methods: The study used a pre-post, mixed methods, pragmatic, uncontrolled design. Digital intervention content was codeveloped with a lived-experience group to meet the needs uncovered during the intervention development and logic mapping phase. The resulting 8-week digital intervention, Hope Programme for Long COVID, was attended by 47 participants, who completed pre- and postprogram measures of well-being, self-efficacy, fatigue, and loneliness. Goal-setting data were extracted from the digital platform at the end of the intervention. Results: The recruitment rate (n=47, 83.9%) and follow-up rate (n=28, 59.6%) were encouraging. Positive mental well-being (mean difference 6.5, P<.001) and self-efficacy (mean difference 1.1, P=.009) improved from baseline to postcourse. All goals set by participants mapped onto the 5 goal-oriented domains in the taxonomy of everyday self-management strategies (TEDSS). The most frequent type of goals was related to activity strategies, followed by health behavior and internal strategies. Conclusions: The bespoke self-management intervention, Hope Programme for Long COVID, was well attended, and follow-up was encouraging. The sample characteristics largely mirrored those of the wider UK population with LC. Although not powered to detect statistically significant changes, the preliminary data show improvements in self-efficacy and positive mental well-being. Our next trial (ISRCTN: 11868601) will use a nonrandomized waitlist control design to further examine intervention efficacy.

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  • The 7 TEDSS domains have been used to successfully identify and describe content in self-management interventions, including in scoping reviews.

    “The 7 distinctive TEDSS domains (Textbox 2) have been used to successfully identify and describe content in self-management interventions [32,33], including in scoping reviews [11,34].”

    From Features of Structured, One-to-One Videoconference Interventions That Actively Engage People in the Management of Their Chronic Conditions: Scoping Review (2025) · cites this paper as [33]

    The Methods (Analysis) and Results (Goal Setting; page unavailable) show that TEDSS was used to classify participants’ goals in a self-management intervention, with good agreement between coders. This paper used 5 goal-oriented domains, however, and did not use all 7 domains to identify or describe intervention content. The scoping-review portion of the citing sentence is attached to other citations. (LLM, conf=0.85)

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Research works printed but not linked: 1

  1. [9]Gallagher P Saunders T Doctors Told to stop Sending Patients to Long Covid Clinics at Large NHS Trusts 2022-09-28 https://inews.co.uk/news/health/doctors-told-stop-sending-patients-long-covid-clinics-large-nhs-trusts-1416130

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Authors
Wright, H., Turner, A., Ennis, S., Percy, C., Loftus, G., Clyne, W., Matouskova, G., & Martin, F.
Affiliations
  • Coventry University (GB)
  • University Hospital Coventry (GB)
  • Coventry (United Kingdom) (GB)
  • University of Plymouth (GB)
Corresponding author
Wright, Hayley
ORCID
Venue
JMIR Formative Research
Publisher
JMIR Publications Inc.
Published
2022-10-14
Volume
6
Issue
10
Pages
e41410
ISSN
2561-326X (ISSN-L)
DOI
10.2196/41410
PMC
PMC9578526
OpenAlex
W4297488899
Cited by
26
References
36
Citations by year
2026: 5 · 2025: 10 · 2024: 9 · 2023: 2
FWCI
2.76
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • JMIR Formative Research (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Repository@Nottingham (University of Nottingham) (publishedVersion, cc-by)
  • ORCA Online Research @Cardiff (Cardiff University) (acceptedVersion)
  • Repository@Nottingham (University of Nottingham) (submittedVersion, cc-by)
  • PEARL (University of Plymouth) (submittedVersion, cc-by)
  • Pure (Coventry University) (submittedVersion, cc-by)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
  • PEARL (University of Plymouth) (submittedVersion)
Funders
University Hospitals Coventry and Warwickshire NHS Trust
Topics
  • Health Sciences › Medicine › Neurology › Long-Term Effects of COVID-19
  • Social Sciences › Psychology › Applied Psychology › Digital Mental Health Interventions
  • Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
Keywords
long COVID, self-management, peer support, positive psychology, digital interventions, co-development, lived experience, goal setting, self-efficacy, well-being, fatigue, loneliness, pacing, cognitive symptoms, intervention development, logic mapping, internal strategy, psychological well-being

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