Description of data:
The characteristics of the participants are shown in the table below. Five of them have a maximum of 5 years' experience as a nurse. For all the others, the average number of years of experience is 13. Twelve out of eighteen participants worked in hospitals settings.
Table: Characteristics of participants
N°
|
Gender
|
Years' experience
|
Place of practice
|
Specificity
|
P1
|
F
|
19 years
|
Private practice
|
Screening-Guidance- Collaboration
|
P2
|
F
|
21 years
|
Hospital
|
Monitoring- Guidance
|
P3
|
F
|
10 years
|
School
|
Screening
|
P4
|
F
|
13 years
|
Hospital
|
Therapeutic Education
|
P5
|
F
|
13 years
|
Private practice
|
Screening-Guidance- Collaboration
|
P6
|
F
|
3 years
|
Hospital
|
Monitoring- Guidance
|
P7
|
F
|
10 years
|
Private practice
|
Screening-Guidance- Collaboration
|
P8
|
F
|
11 years
|
Private practice
|
Screening-Guidance- Collaboration
|
P9
|
F
|
3 years
|
Hospital
|
Monitoring-Orientation
|
P10
|
M
|
18 years
|
Private practice
|
Screening-Guidance- Collaboration
|
P11
|
F
|
2 years
|
Hospital
|
Monitoring-Guidance
|
P12
|
F
|
5 years
|
Hospital
|
Monitoring- Guidance
|
P13
|
F
|
5 years
|
Hospital
|
Monitoring- Guidance
|
P14
|
F
|
13 years
|
Hospital
|
Research- Coordination-Dedicated Pathway
|
P15
|
F
|
31 years
|
Hospital
|
Therapeutic Education- Coordination- - Dedicated pathway
|
P16
|
F
|
20 years
|
Hospital
|
Therapeutic Education - Dedicated pathway
|
P17
|
F
|
23 years
|
Hospital
|
Therapeutic Education - Dedicated pathway
|
P18
|
M
|
9 years
|
Hospital
|
Physiologist- Coordination-Dedicated pathway
|
The problem of managing patients with Long COVID has emerged insidiously. Some healthcare professionals have pointed out the perplexing nature of the various clinical cases. A common feature, described by all participants, is the challenge of dealing with distressed patients who often express a lack of recognition of the severity of their condition. The inability to resume normal professional activities was a common criterion frequently reported, especially for those grappling with debilitating fatigue:
“Basically, people tell them, you're tired but you've just got to get moving, get out of bed and you'll feel better” (P17, DP).
Additionally, there are accounts of wandering patients seeking solutions:
"I recall people wandering around, seeking help from multiple doctors" (P16, DP).
Some professionals also acknowledge the initial difficulty in providing care, given that many general practitioners are unfamiliar with this syndrome:
"This persistent fatigue has left doctors somewhat perplexed" (P1, PP).
The primary findings of our study emerged when we explored the roles of nurses in the care of Long COVID patients. The roles reported included identifying and screening Long COVID patients, offering guidance and support, conducting therapeutic education, engaging in clinical research, and coordinating care in collaboration with other healthcare professionals such as general practitioners, specialists, physiotherapists, and other paramedical staff. These roles were identified as vital in delivering holistic care to Long COVID patients.
Theme 1: Long Covid- Lack of Knowledge about this new syndrome
The problems associated with the complexity of the syndrome have been highlighted on several occasions:
"It's a complex condition, and it often baffles us" (P16, DP).
In this new scenario,
"Families, friends, and even some doctors are perplexed as diagnostic tests show no clear answers" (P18, DP).
Care is organized according to the specific clinical situations that arise, with patients facing difficulties in accessing appropriate care. And when they do a notable clinical feature is the psychological distress experienced by these patients:
"Psyche scars are often the most prominent clinical feature" (P18, DP).
Professionals have had to adapt to the wide range of symptoms, many of which lack established treatment options. The lack of knowledge on the subject makes treatments difficult. These symptoms include respiratory problems, attention and concentration issues, and difficulties in returning to work:
"Symptoms encompass ageusia, severe and chronic fatigue, chronic pain, neurological disorders, cardiac complications, and mood and morale impacts" (P4, DP).
Professionals working in specialized pathways note that psychological distress and fatigue fluctuate over time:
"Psychological distress and fatigue in Long COVID patients exhibit fluctuations, which profoundly affect their morale" (P14, DP).
All participants emphasize that given the current healthcare landscape, training on Long COVID is imperative to better support patients:
"It would be beneficial to train nurses to recognize and differentiate Long COVID from other pathologies that may be similar to it." (P3, S).
Such training would enable improved screening and diagnosis:
"Diagnosing Long COVID is challenging, as it can often mimic other conditions. Is it long Covid or is it link to another pathology?" (P12, H).
Furthermore, it would equip healthcare professionals to provide information to patients who may not be aware they have Long COVID:
"It's during conversations that we sometimes discover patients have lingering COVID symptoms" (P2, H).
Participants suggest various measures to enhance Long COVID patient care, including collaboration with patient associations and facilitating access to suitable healthcare pathways:
"We should be able to refer patients to relevant organizations and resources, including families, not just patients" (P13, H).
Many other actions are proposed to enhance Long COVID care, including empowering patients to be active partners in their own care:
"I see these pathologies which are these functional disorders, as an opportunity to work together and to work differently with patients. We're really in a different culture. Our Western culture is really focused on top-down medicine, so we're not really working together. We prescribe and the patient complies, but for disorders like these, like fibromyalgia, like long Covid, we can't provide this kind of response, or rather it's not enough. We don't have any symptoms, we don't have any treatment to give, we don't have any medication to give, so we must reinvent ourselves, so I also see it as an opportunity to try and get things moving. We must try to put the patient at the centre and take him or her as a whole " (P4, H).
Theme 2: Long COVID Treatment - An Interprofessional Challenge
Similar to many chronic illnesses, Long COVID necessitates long-term care and collaboration among various healthcare professionals:
"Depending on the type of lingering symptoms, we may refer patients to specialists for tailored treatment" (P2, H).
A comprehensive, personalized approach is emphasized during patient follow-up, including a comprehensive interview with the patient. During this interview, a shared educational assessment is carried out. All areas of the patient’s daily life are covered to determine the patient’s difficulties and resources.
"The assessment is extensive, aiming to gather as much information as possible about the individual to identify the best solutions" (P18, DP).
Professionals involved in rehabilitation recommend that patients dedicate their time exclusively to recovery, without combining it with other professional activities, as this can impede progress. This would make recovery difficult or even ineffective.
"Some individuals attempted part-time work while undergoing rehabilitation, which proved counterproductive as it drained their energy" (P17, DP).
At present, there are limitations to the care that can be provided to Long COVID patients due to the shortage of specialized professionals in this field. The nurses interviewed described this as a source of frustration. The few specialists mentioned during the study were neuropsychologists and speech therapists concentrating on taste and smell rehabilitation.
" For the moment, there is an imbalance, we are well aware that we are not offering a complete programme, unfortunately" " (P16, DP).
Theme 3: The nurse - A professional with multiple roles
All interviewed professionals acknowledged their essential role in caring for Long COVID patients. They assume a diverse range of responsibilities in their practices, including medication management, clinical monitoring, patient reception, providing emotional support, patient education, and coordinating care.
Relational Role
In this distressing pathology, healthcare professionals emphasize the paramount importance of listening as the initial therapeutic intervention for patients. Indeed, participants noted the profound relief experienced by patients when they find themselves in an environment where they are "finally heard" and "without judgment."
"Simply listening to the patient already provides comfort and reassurance" (P5, PP).
Screening and Guidance Roles
This role is often fulfilled by nurses, particularly those working in private group practices who frequently serve as the first point of contact. This role can be succinctly summarized as encompassing screening and guiding patients towards dedicated care pathways.
To identify these symptoms, nurses routinely inquire about patients' present complaints, medical history, and potential exposure to Covid-19.
"There is a genuine need to distinguish between individuals with long Covid and those with other conditions" (P3, S).
Once these patients are identified, nurses provide them with essential information and direct them towards available resources.
"Our responsibility includes directing individuals to specialized centers" (P12, H).
Collaborative Role
Irrespective of their practice settings, whether in private practices or hospitals, nurses collaborate closely with the broader medical team to formulate personalized care plans for patients and continuously monitor their progress over time.
"It is an integral part of our role to provide feedback to the General Practitioner: how has the patient been this week? How are they feeling? What feedback have they provided?" (P1, PP).
Patient Education Role
This role is mainly mentioned by professionals involved in dedicated pathways, particularly those specializing in therapeutic education. Nurses specializing in therapeutic education use shared assessments to identify the specific needs of long Covid patients and provide them with the tools to adopt a balanced lifestyle that will enable them to have a better management of persistent symptoms.
"We have a role to play in supporting these patients through therapeutic education, teaching them how to regain their quality of life" (P8, PP).
Coordination Role
The role is essential in ensuring ongoing monitoring of patients throughout their recovery journey. Different individuals within specialized long Covid management pathways may assume this coordination function. The coordinator ensures there is good communication among all professionals involved in the patient's care and conducts assessments at the program's commencement, midpoint, and conclusion, in collaboration with the entire team.
"We work closely together, it's a team effort, and having motivated and committed individuals is crucial" (P4, H).
Researcher Role
In addition to their caregiving responsibilities, nurses also contribute to research efforts. They express that patients are interest in taking part in such work and that they emphasize the opportunity to meet specialist doctors. The research outcomes contribute to improve Long Covid management.
"Our protocol is designed to collect observational data, make predictions, identify common patient patterns, and understand the nuances of long Covid" (P14, R).