Digital peer-supported self-management, co-designed by people living with Long COVID: a mixed methods proof-of-concept study 2022 Wright et al

ABSTRACT

Background:

There are around 1.3million people in the UK living with the devastating psychological, physical and cognitive consequences of Long COVID. UK guidelines recommend that Long COVID symptoms are managed pragmatically with holistic support for patients’ biopsychosocial needs, including psychological, emotional, and physical health. Self-management strategies such as pacing, prioritisation, and goal setting are vital for the self-management of many Long COVID symptoms. This paper describes the co-development 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 Long COVID.

Objective:

The objectives of this study were to: i) co-design an intervention with and for people living with Long COVID; ii) test the intervention and study methods; iii) measure changes in participant wellbeing, self-efficacy, fatigue and loneliness; iv) gain understand the types of self-management goals and strategies used by people living with Long COVID.

Methods:

The study employed a pre-post, mixed methods, pragmatic, uncontrolled design. Digital intervention content was co-developed 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 post-programme measures of wellbeing, self-efficacy, fatigue and loneliness. Goal-setting data was extracted from the digital platform at the end of the intervention.

Results:

The recruitment rate (83.9%) and follow up rate of (59.6%) were encouraging. Positive mental wellbeing increased by 6.5 points from baseline to post-course (p<.001). Self-efficacy also improved from baseline to post-course (mean difference 1.1, p=.009). All goals set by participants mapped onto the five goal-directed everyday self-management strategies in the TEDSS taxonomy. The most frequent type of goals related to activities strategies, followed by health behaviour 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 living with Long COVID. Our next trial (ISRCTN: 11868601) will employ a non-randomised waitlist control design to further examine intervention efficacy.

Open access, https://preprints.jmir.org/preprint/41410/accepted

 

Let them... bake their own damn cake.

 

Just so sad people are still making a living out of this sort of thing. Off the shelf obvious stuff, stick a few numbers in boxes for measures that don't really matter and payday. Even if it worked or had use that paper really changes nothing, it's just figures put in for political reasons (justify this supply-led offering) rather than 'what do people need'.

But this is boring, same old nonsense with a few lazy words to justify the laziness. Which you are hoping lazy people will think they can get away with Oking as it 'ticks the box' even though it sidesteps anything of any use 'because it is something'? 'positive mental wellbeing increased by x points (which we don't know what that means)' in a debilitating condition misses the point and just sounds like a jobsworth having to pretend they've achieved something in a team meeting so making something up of 'pretend worth'. Who asked for that many points or whatever they've mulched into their 'positive mental wellbeing' thingymebob.

This is just 'well John we've got a small pot of cash for something, bung me together a page on what we think we can set up to run next week with something that looks to tick the box approx to the criteria asked for, and a few numbers to say 'it's good' as an approx KPI-nod and that's signed off by the weekend'. From a marketing process it almost feels 'reverse engineered' to a price-point on resource and what people want to deliver.

Here's the thing - people could actually want to really do the job there is to be done here? It feels like the emphasis is on the wrong thing - rather than run something that helps or is useful (and the process needed to create it and keep it that way) and think about how and what goes in it and the people who are ill it is about these pseudomeasures. I mean I get the need to justify yourself through a KPI and being seen to work but..

Shouldn't all this really start with a completely different thing and a big sheet of paper and decisions on who could bring something to the table information-wise and what people need. Or what some might find helpful and just be frank with its limited audience but usefulness to them?

Maybe I'm just wound up and fed-up with people thinking goal-setting is all people need - and how when I read something like that it just feels like sales spiel on all levels of an industry rather than the reality of a condition.

There are loads of people trying to run groups across the country that struggle because resource is short for anything ME, and then the gaps are being plugged by people with less resource and - literally as the definition of their condition less energy. Why are people like this telling us what is needed for wellbeing rather than there being a big blank piece of paper discussion - done in such a way as to make it properly based around the accessibility needs of those with LC and ME/CFS (who can input as they've had it longer and now what is missing) to tell HCPs what would help.

It just feels like the world won't get it into their head that lack of goals or tenacity isn't the reason for debilitation and positive psychology is just disacknowledgement which is harmful.

In fact the description of the content feels like selling ablism and forcing acceptance and internalisation of it down the throat of disabled people.

Worst of both worlds - use the patients energy for 'peer support' and delivery and none of their input for what is worth wasting their time over.