Research and development
Feature
However , we realised that we needed to bring these views together to decide how best to take the research forward .
Often when we use the term ‘ experts ’ we are referring to professionals . However , it is important to recognise that ‘ experts ’ includes a range of people . With regard to our research , it included stroke survivors with fatigue , those with fatigue arising from other conditions , such as multiple sclerosis ( MS ) and cancer , and family and friends living with the issue .
We therefore sought to bring together a range of stakeholder experts to talk about the topic and to exchange ideas and opinions ( co-design ) on the content , design and presentation of management programmes .
Our approach to co-design was informed by an experience-based co-design ( EBCD ) methodology , using findings from our earlier research to trigger ideas and solutions for a fatigue management programme ( King ’ s Fund 2018 ).
Essentially the overall aim of the codesign groups was to provide participants with an opportunity to shape a future fatigue management programme and consider how it might be best delivered .
Running the groups
In total we ran five co-design groups over 16 weeks , with a total of 35 people , including group facilitators , who took part . We included people with stroke , people with fatigue resulting from other conditions , for example MS and Long Covid , professionals , and carers .
The professionals included stroke consultants , occupational therapists , clinical psychologists , physiotherapists , and academics with knowledge of the field . Some professionals were also living with fatigue as a part of a long-term health condition or were providing care to others .
People were invited to take part in a number of ways . We asked for volunteers through Twitter , wrote to various charities , such as the UK Stroke Association and Different Strokes , and we asked people who participated in earlier phases of the research if they would like to be involved .
When people got in touch , we electronically sent them information about what the study involved and covered issues such as confidentiality . If they still wanted to take part , we took their consent and added then to the session that would be most convenient for them to attend , while at the same time balancing the numbers of professionals and those with fatigue . Due to the measures in place for COVID-19 , we ran the co-design groups via video-call . Prior
Often when we use the term ‘ experts ’ we are referring to professionals . However , it is important to recognise that ‘ experts ’ includes a range of people .”
to the co-design group session , a link was sent to join via Microsoft Teams , along with a number to call if they had problems joining . Support staff were available throughout the sessions .
The co-design group sessions all followed a similar format . Following a brief introduction , the group was divided into two smaller groups using the ‘ break out rooms ’ function .
The two break out group discussions lasted approximately one hour , with a break included . The groups then joined back together for a feedback discussion session lasting for 20 minutes . The groups were led by experienced facilitators .
Discussion and feedback
In the first four sessions , findings from the early stages of the NOTFAST2 study were used as a guide to the discussion . These included perceptions of fatigue and fatigue related interventions , acceptability and delivery .
Participants were also given the opportunity to recount their own experiences . These thoughts were fed into a final fifth session , which pulled together the various strands and was attended by those offering to participate again . We were particularly keen to discuss ideas around fatigue management programmes in this session .
The co-design groups facilitated constructive discussions between professionals and those with lived experience . There was mutual respect for different viewpoints and the sessions facilitated insights from the different parties to occur . Important aspects were noted about the design of fatigue programmes and included , for example :
• the key message that fatigue is real and not just about being ‘ tired ’;
• stroke survivors and caregivers are unlikely to have encountered post-stroke fatigue before and are therefore unaware of the implications ;
• those with lived experience felt that healthcare professionals often do not fully
January 2022 OTnews 51