Choice, control and HOPE – self-management for long COVID
On 8th December 2021, in our webinar Hope - Community led self-management for long COVID, we shared preliminary results from the evaluation of our Hope Programme for long COVID. Offering practical tips on self-management practice – what works and what can be improved.
The session was chaired by Dr Anna Lynall, Project Delivery Lead for Hope For The Community CIC (H4C), and we were delighted to have a panel of experts sharing the virtual floor.
Frances Tippet, Programme Director at NHS England discussed the need for personalised care and the importance of self-management as provided by the Hope Programme. She has seen the positive way in which the Hope Programme has supported people living with long COVID in the Southwest. She highlighted the usefulness of the approach empowering peer support networks to come together to discuss relevant issues, and to then create their own strategies to self-manage. She stressed the value of the Hope Programme which has been co-designed with people who have lived experience of the condition.
“People with the condition…and staff… are finding it a really empowering process to go through together.”
Andy Turner - Professor of Health Psychology at Coventry University and co-founder of H4C and co-inventor of the Hope Programme described how the Hope Programme was developed through many interviews with people living with a long-term condition attending self-management courses.
“When I asked participants what they found useful, and what helped them become better self -managers…overwhelmingly the thing they said they found most helpful was being in a group with other people with a similar condition, sharing experiences…”
Andy further discussed the importance and inspiration that was felt as a result of being part of a course that is facilitated by people who have been through similar experiences. He highlighted the importance of addressing the mental wellbeing and mood of participants - where mood is low, there will be a low motivation to self-manage.
Gabriela Matouskova, CEO of H4C described the process of co-production (Figure 1) and development timeline (Figure 2) of the pilot Long COVID Hope Programme funded by NHS Charities Together as part of the Live well with Hope project.
Figure 1: H4C coproduction approach
Figure 2: H4C Hope Programme for long COVID development timeline
Gabriela described how the Hope Programme works, how it is delivered and what is included in the 8 sessions with this brief 2.28 minute video below.
Garry – Hope Programme participant talked of his experiences of living with Long COVID, his support from Long Covid SOS and his self-advocated move towards searching for support. He talked of how the Hope Programme has helped him to develop strategies to self-manage his situation. He now manages his energy levels with pacing activities, self-compassion, and realistic goal setting.
“You empathise with everybody in that group because you’ve all been there.” “…Self-reward to be able to feed back that positivity into the group”
He found the course to have a good layout, be user-friendly, well put together, and valued the replies and support received from facilitators and others on the course.
Dr Hayley Wright - Assistant Professor from Coventry University discussed the evaluation of the Long COVID Hope Programme. Fifty-eight participants enrolled on the course with 48 starting Session 1 and completing pre course questionnaires. Most participants (83%) were women and had a mean age of 49 years. Nearly half (43%) of participants reported long COVID symptoms for over 12 months, few (4%) had been hospitalised due to Covid. Three quarters (77%) of participants have had to cut back on work due to Long COVID. Participants main symptoms were fatigue (100% of participants), concentration (98%) and memory problems (94%).
A range of outcome measures were used to evaluate the Programme:
Warwick Edinburgh Mental Wellbeing Scale (WEMWBS) to assess mental wellbeing. Scored 14-70, higher scores = better wellbeing. A change of three or more is seen as a clinically meaningful change.
Self-Efficacy to Manage Chronic Disease Scale to assess confidence to manage a long-term health condition. Scored 1-10, higher scores = more confidence.
Fatigue Severity Scale to assess fatigue. Scored 1-7, higher scores = worse fatigue
UCLA loneliness scale to assess loneliness. Scored 3-9, higher scores = more loneliness.
So far 27 participants have completed the outcome measures before and after the Hope Programme (Figure 3). Participants’ mental wellbeing significantly improved (pre course 40.1, post course 47.1), their confidence to self-manage improved (pre course 4.8, post course 5.9). There were small non-significant improvements in fatigue (pre course 5.9, post course 5.5) and loneliness ( pre course 6.0, post course 5.7).
Participants also completed the short version of the WEMWBS on the platform in Session 1, Session 4 and Session 8. Figure 4 below shows that most of the improvement in mental wellbeing took place in the first 4 Sessions.
Figure 3: Outcome measures collected on pre and post the Programme
Figure 4: Short form WEMWBS scores at Session 1, Session 4 and Session 8.
Gabriela then highlighted data on participant satisfaction and engagement.
Over three quarters (77%) of the participants completed four or more of the sessions. Most participants (87%) said that the Hope Programme either met or exceeded their expectations.
We used the Net Promoter Score (NPS) to assess measure customer experience. The NPS calculation uses the answer to a key question, using a 0-10 scale: How likely is it that you would recommend The Hope Programme to a friend or colleague? Scored from 0-100, higher scores = more positive customer experience.
The Hope Programme for long COVID achieved a NPS score of 64 – which is classed as great customer experience. Participants gave several reasons why they would recommend the course including the flexible, positive and structured approach the course uses.
Interested in getting the Hope Programme for your long COVID patients?
Do not hesitate to contact us for demo or any other enquiries by emailing hope@h4c.org.uk
If you missed the live event, want to share it with colleagues, or would like to see it again, you can watch a recording via our Vimeo channel.
We offer range of free UK wide Hope Programme courses for other conditions, see our full 2022 offer on our website.
Interested to hear more about community led self-management? Coproduction? Let us know your feedback on this webinar and suggest any future topics in which you maybe interested.
Hope Programme for long COVID is delivered part of Live well with Hope project, funded by NHS Charities Together, working in conjunction with University Hospital Coventry & Warwickshire Charity.
