Preprint Conceptual framework of episodic disability in the context of [LC]: Findings from a community-engaged international qualitative study, 2024, O’Brien+

[SNT Gatchaman]

Conceptual framework of episodic disability in the context of Long COVID: Findings from a community-engaged international qualitative study
Kelly K. O’Brien; Darren A. Brown; Kiera McDuff; Natalie St. Clair-Sullivan; Soo Chan Carusone; Catherine Thomson; Lisa McCorkell; Hannah Wei; Susie Goulding; Margaret O’Hara; Niamh Roche; Ruth Stokes; Mary Kelly; Angela M. Cheung; Kristine M. Erlandson; Richard Harding; Jaime H. Vera; Colm Bergin; Larry Robinson; Lisa Avery; Ciaran Bannan; Brittany Torres; Imelda O’Donovan; Nisa Malli; Patricia Solomon

BACKGROUND
Increasing numbers of adults are living with the health-related consequences of Long COVID. The Episodic Disability Framework (EDF), derived from perspectives of adults living with HIV, characterizes the multidimensional and episodic nature of health-related challenges (disability) experienced by an individual. Our aim was to determine the applicability of the Episodic Disability Framework to conceptualize the health-related challenges experienced among adults living with Long COVID.

METHODS
We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews. We recruited adults who self-identified as living with Long COVID via collaborator community organizations in Canada, Ireland, United Kingdom, and United States. We purposively recruited for diversity in age, gender identity, ethnicity, sexual orientation, and time since initial COVID-19 infection. We used a semi-structured interview guide informed by the EDF to explore experiences of disability living with Long COVID, specifically health-related challenges and how challenges were experienced over time. We conducted a group-based content analysis.

RESULTS
Of the 40 participants, the median age was 39 years; and the majority were white (73%), women (63%), living with Long COVID for ≥1 year (83%). Consistent with the Episodic Disability Framework, disability was described as multidimensional and episodic, characterized by unpredictable periods of health and illness. Experiences of disability were consistent with the three main components of the Framework: A) dimensions of disability (physical, cognitive, mental-emotional health challenges, difficulties with day-to-day activities, challenges to social inclusion, uncertainty); B) contextual factors, extrinsic (social support; accessibility of environment and health services; stigma and epistemic injustice) and intrinsic (living strategies; personal attributes) that exacerbate or alleviate dimensions of disability; and C) triggers that initiate episodes of disability.

CONCLUSIONS
The Episodic Disability Framework provides a way to conceptualize disability the multidimensional and episodic nature of disability experienced by adults living with Long COVID. The Framework provides guidance for future measurement of disability, and health and rehabilitation approaches to enhance practice, research, and policy in Long COVID.


Link | PDF (Preprint: MedRxiv) [Open Access]

 

[SNT Gatchaman]

While pacing and energy conservation was a necessary strategy, participants also spoke of the consequences that pacing had on their ability to work, engage in social activities (having to decline at last minute depending on energy level, uncertainty of crashes). Pacing sometimes involvedprioritization and sacrifice , scaling back their activities to the bare minimum to manage their challenges with daily activities. While pacing was an essential skill for many, it was aconstant balancing act , that also came at a cost on their productivity, satisfaction, and overall feelings of fulfillment.

Participants described tracking health trajectories using wearables and other assistive devices including apps, [t]rackers and wireless activity and heart rate monitors to identify potential triggers and learn limits to inform strategies of pacing.

 

[Andy]

Now published,
Episodic disability framework in the context of Long COVID: Findings from a community-engaged international qualitative study

Open access

 

[Utsikt]

I find it a bit weird that pacing is viewed as something with a negative consequence. I think of the limits as a negative consequence of the disability itself.

I don’t do less because I have to pace. I do less because my body can’t do more.

It might have something to do with self-perception? I’ve fully embraced and accepted my disability. That’s not to say that it isn’t hard sometimes.

 

[forestglip]

I find it a bit weird that pacing is viewed as something with a negative consequence. I think of the limits as a negative consequence of the disability itself.

In the sense that in a way pacing is still a choice, it's good to know what the negative effects of that choice are (even if it's clear they're outweighed by the positives). It might highlight the reasons people aren't pacing to maybe figure out how to make it more accessible.

If I replace the words to something (wearing a cast for a broken bone) that also is a choice but clearly the superior choice in most situations, I think it still makes sense to talk about this way.

While wearing a cast on a broken arm was a necessary strategy, participants also spoke of the consequences that the cast had on their ability to work, write, and box. Wearing a cast sometimes involved prioritization and sacrifice, scaling back their hand-associated activities to the bare minimum. While wearing a cast was an essential choice for many, it was a constant balancing act, that also came at a cost on their productivity, satisfaction, and overall feelings of fulfillment.

 

[Utsikt]

In the sense that in a way pacing is still a choice, it's good to know what the negative effects of that choice are (even if it's clear they're outweighed by the positives). It might highlight the reasons people aren't pacing to maybe figure out how to make it more accessible.

Good points!

Although the cast example stretches the normal perception of what a choice is. It’s a bit like saying that I choose to live in a house, as opposed to living on the streets.

But the disadvantages to any disability should be illuminated, so this is still valueable insight.