A team of researchers in America have found that including ‘lived experience experts’ – people with lived experience of ME/CFS, long COVID, or other post-acute infection syndromes (PAIS) – in a virtual education program for health professionals generally improved the care patients received.
The aim of including lived-experience experts in the program, entitled ‘The Long COVID and Fatiguing Illness Recovery Program (LC&FIRP)’, was to provide health care professionals with a perspective on living with long COVID, ME/CFS, or PAIS, and information relating to the medical care experiences of people with one of these illnesses.
In the program, the lived experience experts worked with the health professionals, and provided their recommendations through one-to-one sessions, and in group webinars. The health professionals then provided care for people with either long COVID, ME/CFS, or another PAIS.
A paper has been published in the journal ‘Frontiers in Health Services’ exploring:
- The recommendations given by the lived-experience experts.
- The experiences of patients with Long COVID, ME/CFS, or PAIS who were cared for by health providers in the LC&FIRP.
What did the study team do?
The researchers reviewed recordings of webinars given to the LC&FIRP health professionals by nine lived experience experts.
The team then interviewed 22 people with Long COVID, ME/CFS, or PAIS (described as ‘patients’ in the paper) who were being treated by these clinicians.
The content from the webinar recordings was analysed, and common themes identified. The interviews were also analysed, and researchers looked for matches and nonmatches between patients’ perspectives on their care and the recommendations made by lived-experience experts.
What did the researchers find?
The researchers found 6 major themes within the lived-experience experts’ recommendations to providers:
- Validation of patients’ illness experiences
During the education sessions, the lived experience experts “urged providers to validate patients’ symptoms and experiences”. Patients who received care as part of the LC&FIRP, reported that one of the main benefits was validation of their experience – some even described how this validation “helped them to be more proactive in seeking help and feel more confident in advocating for themselves”.
- Attitudes and beliefs about Long COVID, ME/CFS, and other PAIS
One lived experience expert, who was also a medical professional themselves, explained that although traditional medical training may predispose health providers to attribute the ‘wide array of symptoms’ seen in long COVID, ME/CFS, and other PAIS to mental illness, health care providers must not assume that the symptoms are psychological in nature.
Another expert highlighted the need for health providers to consider the difference between clinical depression and depressed mood:
“If you imagine someone like me, who used to be out in the field working every day, playing sports every other day-now I’m stuck in bed most of the time. I’d be lying if I didn’t say I had a depressed mood, and it would be a normal and rational response to that kind of change. So, this whole distinction between depression and depressed mood is something I’m hoping providers can really think about”
Interestingly, patients who received care as part of the program reported that their own attitudes and beliefs about their illness had changed. One participant explained that prior to the program, they felt like they were starting to believe their old doctor who told them their symptoms were due to mental illness. However, taking part in the program helped them to recognise that this was not true:
“The program helped me open up, so it’s like ‘okay, so I’m not the only one feeling this way and everything. I’m not crazy’”
Another point highlighted by the lived experience experts was the importance of documenting the physical and cognitive nature of symptoms in medical notes.
- Understanding patients’ challenges and communicating with empathy
The lived experience experts also stressed the importance of the providers developing a better understanding of the complex issues experienced by people with Long COVID, ME/CFS, or other PAIS. The experts elaborated by explaining the ways in which the disease takes away from the person that you were:
“Many of us … have had a tremendous amount of loss after we get our diagnosis… a loss of identity, a loss of the skills that we had, the brain we used, our communications style, the relationships that we’ve had, the ability to do work or not do work, the ability to do volunteer work or not do volunteer work, to have a child, to have a pet. These things have a serious impact”
- Navigating referrals
Lived experience experts explained that to help people with Long COVID, ME/CFS, or other PAIS conserve energy for attending appointments, they should receive support navigating the healthcare system.
Patients who were interviewed also highlighted that they were dissatisfied with the care that they had received from specialists they had been referred to outside the LC&FIRP – poor appointment availability, and the lack of specialist care for people with severe symptoms were also noted.
- Recognizing and supporting disability
Here, the lived experience experts underlined the importance of signposting patients to the services and supports that they may be eligible to receive.
- Encouraging and supporting self-care
The lived experience experts also shared with the health providers, the positive impact of self-management, self-monitoring, and pacing.
“Providers should really be encouraging patients to pace their activity and be really intentional about taking rest”
Patients also shared the positive impact of being encouraged to practice self-care:
“I like this program because it helped me take care of myself, have healthier habits, and know how to identify when my body is getting sick”
Nonmatches
Nonmatches between patient perspectives and lived experience expert recommendations were also identified. These were that patients highlighted the need for printed resources and brochures in another language (Spanish), while the experts did not. Additionally, lived experience experts discussed the need for health providers to acknowledge their uncertainty given the limited evidence base to support care, this issue was not raised by patients.
What were the limitations of the study?
The study had several limitations which were acknowledged by the authors, these included:
- The recommendations given by the nine lived experience experts may not reflect the views and experiences of all people with long COVID, ME/CFS, or other PAIS.
- The patients who were interviewed may not reflect all the patients who were cared for by medical providers in the LC&FIRP.
- The analysis included recommendations given by the lived experience experts during the webinars, but not those during the tele-mentoring sessions. This was done to protect the information from discussions relating to individual cases, but may mean that not all recommendations given are reflected in the findings.
What do the findings mean?
Findings from this study suggest that there may be a benefit of including lived experience experts in training programs for health professionals relating to Long COVID, ME/CFS, and other PAIS – especially to increase validation of patients’ illness experiences, and to enhance health provider understanding of the complex nature of these illnesses.
Interestingly, in their paper the authors state that other programs – such as those for Autism – have also reported the positive impacts of including lived experience experts.
Despite this, the researchers acknowledge that medical education alone is not likely to solve all the problems faced by people with Long COVID, ME/CFS, or other PAIS, such as challenges with referrals to specialists, and help filing for disability or employment benefits.
