Using co-design methods to develop new personalised support for people living with Long Covid: The ‘LISTEN’ intervention, 2024, Jones et al.

Using co-design methods to develop new personalised support for people living with Long Covid: The ‘LISTEN’ intervention
Fiona Jones; Anne Domeny; Jessica Fish; Fiona Leggat; Ian Patel; Jackie McRae; Carol Rowe; Monica E. Busse

INTRODUCTION
Many Covid‐19 survivors are living with unresolved, relapsing and remitting symptoms and no ‘one size’ of treatment is likely to be effective for everyone. Supported self‐management for the varied symptoms of Long Covid (LC) is recommended by the National Institute for Health and Care Excellence in the United Kingdom. We aimed to develop a new personalised support intervention for people living with LC using a structured co‐design framework to guide replication and evaluation.

METHODS
We used the improvement methodology, Experience‐Based Co‐design in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from ‘Bridges Self‐Management’ (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co‐designed resources are also central to Bridges. Adults who self‐identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co‐design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content.

RESULTS
People with LC (n = 28), and HCPs (n = 9) supported co‐design of a book (hard‐copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co‐design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategies and links to reputable advice and support for navigating healthcare services. Co‐design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments.

CONCLUSIONS
We have developed a new personalised support intervention, with core principles to be used in one‐to‐one sessions delivered by trained HCPs, with a new co‐designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the ‘LISTEN’ intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex

INTERVENTION
Patient and Public Contribution: The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co‐design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co‐authors of this paper.

Link | PDF (Health Expectations) [Open Access]

 

Seems mostly fine, other than there being zero awareness of the chronic illnesses that make up LC, but framing this as an intervention is all wrong. It should not be expected to be effective, it's just basic knowledge that will not cause harm, but shouldn't be expected to do much good, other than departing from a harmful gaslighting model.

Is it because everything has to be designed as some intervention in order to be funded? I don't know if there's more to it than this paper, there really better be because it's missing a whole lot, it's all very basic stuff that is just one layer removed from not calling people names and other basic things.

Personalized self-management is not health care. It definitely would be an improvement to move from a harmful model to a neutral one, but this is neutral, it's not good in itself, it's the bare minimum, and maybe not even that, that could have been done decades ago. Still improvement, but only because it's trying to raise the bar at ground level where right now it's deep into a cesspool of raw sewage.

And frankly some of it is just the same old with less offensive words:

Really, this isn't much more than what we learn at kindergarten, but for professionals. "Don't pull other children's hair" and so on. Frankly finding that professionals have to be told this stuff is a giant red flag for "what the hell have we been doing all along?!"

There are already clinics that pretty much meet this. They are the ones that are considered mostly useless, but friendly, rather than harmful. Professionals have to aim much higher than this, this is basically less advanced and useful than where the patient community was, frankly pretty much on day one. As in it's a slightly worse version of what patients would come up on their own, having to work it through a convoluted process that pleases some professionals. Or whatever.