When i attended #LifeAfterStroke #ELASF2025 i was registered to attend :
“Workshop: Reimagining wellbeing for life after stroke”

I had no other information than it’s title.
It appears in the agenda.
If it is in the abstracts I have been unable to find it or its listed presenters within the abstracts.

If I recall correctly it was introduced as being a component of the process by which research Would? Should¿ Could be, Will be? selected in future.

I think if we discussed the same topic we’d end with something to contribute to the discussion.

I posit that “well being after stroke” stands as a target so the research can ask “will this piece of work when successful deliver greater breadth, depth of well-being to one or more #StrokeThrivers when compared with our definitions?”

I suggest It would be valuable for others to define “what well-being after stroke means to you”?

I’ll add mine too but I will use reveal formatting tags and I recommend others to too

\~\~\~
[DETAILS= title]
content
[/DETAILS]

Which result in

title

content

to hide our initial thoughts so that on first reading so that It doesn’t influence you.

I suggest on second reading after having written your own contribution read other people’s thoughts and then add reflections on the whole?

Of course you are free to ignore, participate, adopt a different approach..

Ciao
Simon

for me: "Well-being after stroke"...

…needs to be understood or defined as to what it means before we try and target somewhere.

I have observed that many people after stroke struggle with:

accepting that they have had one and/or
accepting that they will not return to their previous set of capabilities in any of physical cognitive emotional external relationships or any other dimension.
That that does not mean one is only left with deficit. with the removal of the old come space and triggering event(s) to create the new 🙂
suddenly there’s a whole new world to explore!

for me: The Start is in 'Theory'

Context

Frederick Hertzberg and Abraham Maslow, are two seperate authors of bodies of work that have had their life’s most known energies encapsulated into models that a 4-year-old can understand 🙂

Einstein suggested this ability to represent with validity a complex topic in a very simple way was a characteristic that demonstrated true understanding. Anon said all models are wrong but some are still useful 🙂

Hertzberg said there are two elements to life’s [well-being] Motivators and Demotivators

He said that motivation is (almost) impossible in the presence of demotivators. He said that the absence of the demotivators in no way creates motivation.

Maslow said the motivators exist in a hierarchy.
When we are under threat to life and limb then 110% of our subconscious is directed towards safety and there is no room for anything else - and consciousness is largely overridden! (this is key 🗝️ to any design of well-being in #LifeAfterStroke)

When we are safe 100% of our consciousness is directed towards hunger and shelter until those too are sated - this will include sleep, physical pain, emotionality such as anxiety, depression, crying/Touretts et.al.

When we are fed and warm and safe then our thoughts can move towards rewarding topics such as Belonging To A Community and Appreciation by others, Being creative within our work and art.

With the understanding that Hertzberg and Maslow’s observations bring to explanations of the realities of psychology (individual well-being) and sociology (community well-being) in our new-normal then we can imagine research topics AND their path to impact that can be aimed towards well-being in #LifeAfterStroke

for me: Conculision № One is...

The needs preceeding ‘_ well-being_’ for an individual go through roughly difineable stages. Ditto for communities - #StrokeThrivers family and friends as well as peer support communities.

The length of each phase or need, the overlaps between phases or needs, the triggering exit and entry to the various overlapping phases/ needs will be different for each individual but for the population on the whole may follow a (skewed?) normal distribution

A (the?¿) Research Life-Cycle

I don’t think the life-cycle needs to be nor can be re-imagined in terms of content and progression - I have difficulty imagining that there is a reimagination possible of the basic lifecycle process (Identify, Define, Decide, Develop, Deliver, Benefit) - but its oversight and control/ decision-making is easily re-imagined and either an overhaul or augmentation is possible and many feel is needed.

How the process is implemented as a procedure (How we implement the process with:

what Roles, Duties, Rights and Obligations accrue to whom,
also what Timings, Prioritisations, Reporting Regimes
what Capabilities and Capacities exist and where
what management and leadership etc)

Can bring changes with benefits.
IMHO (and I have observed in the opinion of others)

the decide phase is lacking appropriate representation from key stakeholders.
the deliver stages are the source of much wasted investment
good work to arrive this phase dissipates with a loss of transmission into usable clinical and life after stroke practises

Here I propose a procedure.

Anyone at any time can throw any idea with any degree of description and work-up into the beginning of the Backlog handling steps (BackLog = any- & every-thing that we might choose to do)
I propose that #StrokeImprovementGroup #SIG Could be a holder of the backlog list.
Anyone can take any idea in the backlog and add to its description, justification, measures and every other aspect of clarification/ definition.
I propose that the SIG community that is open for anyone to join and be the host for people’s definitional contributions
Periodically (perhaps on an event basis plus a calendar driven cadence) the backlog is inspected for merit and contrasted with the list of currently active initiatives
the list of currently active initiatives is ratified or amended - initiatives in flight may get postponed or cancelled or completed or returned to the backlog.
Things waiting on the Backlog may get started.
Who makes the decisions based on what criteria is a question for us to debate. I expect there will be a plurality of bodies representing: different funding streams, different geographies, different institutions, different political prioritisation views, individuals different passions and career aspirations.
The phase ‘Develop’ will be subject to governance and regulation
Oversight will reflect where the work is conducted and where the funding comes from but as we trend towards Deliver SIG could again have a role as an Exchange (or model for others to adapt/ replace/ adopt) between research and professional education for both CPD and undergrad.
SIG and other peer support communities have a role as the source of encouragement and motivation that allows individuals to accept and embrace the journey they are on, sense make and start to gather their definition and pathway towards well-being

3¢

For me, personally

I would think that those who have been around here for a while would see that my well-being after stroke_ has at least a large slice of “being within a community of peers” But that isn’t the only component and there’s only possible after the hygiene factors like pain physical or emotional have been sufficiently quelled…

⅙¢