What are the existing support models for caregivers and patients with long COVID?

By Pooja Toshniwal PahariaReviewed by Danielle Ellis, B.Sc.Feb 3 2023

In a recent study published in the International Journal of Environmental Research and Public Health, researchers presented existing data on support models for the post-coronavirus disease 2019 (COVID-19) condition or long COVID patients and their caretakers.

Long COVID occurs among individuals with prior history of suspected or confirmed COVID-19, usually three months following COVID-19 onset, with persistent symptoms lasting ≥2.0 months, unexplainable by alternative diagnoses. The post-acute sequelae of COVID-19 can lead to functional disabilities, generating home care needs. Support must be provided to long COVID patients and their caretakers to improve the quality of life of patients with post-COVID-19.

About the study

In the present study, researchers reviewed the existing models of support for long COVID patients and their caretakers.

The PCC (population, concept, and context) framework was used, with the population being long COVID patients and caretakers, the concept being supportive care models for long COVID patients and caretakers, and the context being long COVID. The literature search was performed between May of 2022 and October of the same year.  

Data sources comprised the VHL (virtual health library) and databases such as LILACS (Latin American and Caribbean health sciences literature), IBECS (Spanish bibliographic index of the health sciences), the BDENF database, and the health department database of São Paulo. In addition, databases such as PubMed, PMC (PubMed Central), MEDLINE, Embase, Scopus, Web of Science, CINAHL (cumulative index to nursing and allied health literature), ASP (academic search premier), APA (American psychological association), EBSCO, Scielo (scientific electronic library online), and the Epistemonikos database were also searched.

Grey literature comprising the United States of America (USA) government portal data and information on health ministry websites across 187 nations were analyzed. Studies addressing the study question on the basis of the population, concept, and context theme were included, with no limitations in study design, publication year, or language. Records not relevant to the study purpose or not available free of charge were excluded. Two reviewers independently performed data assessments individually, and discrepancies were resolved by another reviewer.

Results

A total of 3,258 records were identified initially, of which 2,015 records underwent title and abstract screening after eliminating duplicate records and studies not based on the PCC framework. Subsequently, 58 records were further excluded, and the entire text of 78 records was screened for eligibility, of which 20 records were considered for the final analysis. The studies were conducted across ten nations from 2020 to 2022. The support models were based on healthcare policies and guidelines for long COVID and at-home support services for long COVID patients and their caretakers.

Clinical guidelines have been published to guide healthcare professionals on long COVID clinical presentation and management, inclusive of telerehabilitation. Pediatric long COVID management consensus has been published in Italy. Technical notes have been published by the health ministry of Brazil, including long COVID identification and management recommendations, utilizing digitalized remote consultation, monitoring, and rehabilitation approaches.

The Thoracic Society of Britain has adopted pulmonary rehabilitation models to provide care to long COVID patients, encompassing action plans from six weeks to eight weeks, regulated by trained healthcare professionals, with telephonic follow-up assessments two to three days post-discharge from hospitals. Additionally, the model includes references for primary care, monitoring, treatment, and evaluation of rehabilitation digitally, physically, or at home.

Information technology (IT) projects have been designed by Italian researchers to aid regional healthcare systems and create organized networks for long COVID patients, aimed at extending at-home care to hospital outpatients, prompt diagnosis followed by early treatment of long COVID, optimizing clinical health governance with equitable access to rehabilitation services, increasing patient and their family satisfaction, improving functional disabilities, and thereby, improved overall life quality. Inter-disciplinary communication and coordinated efforts by healthcare professionals, managers, caretakers, and patients are essential for optimizing health management.

Long COVID healthcare team must comprise (i) physicians to manage comorbid conditions and provide pharmacological medications, (ii) nurses to provide care services associated with hospital-to-home transition, routine care services, and pharmacological management, (iii) psychologists to extend psychosocial care and support, (iv) physiotherapists for respiratory rehabilitation, and mobility and fatigue management, (v) speech therapists for long COVID patients with dysphagia, and (vi) occupational therapists for vocational rehabilitation.

Accordingly, Irish authorities use a hybrid care model, including in-person and virtual clinics, with multidisciplinary support, comprising providers of respiratory care, intensive care, pharmacological care, and psychological and psychiatric care. Tunisian authorities use integrated models for providing at-home cardiopulmonary care to long COVID patients. Hospital staff have conducted online training sessions in Chile, including at-home exercise, nutritional recommendations, and guidelines to overcome fatigue and difficulties associated with speech and swallowing.

Further, studies performed in North America have highlighted the need for social interactions through online health communities (Reddit and Facebook) to facilitate information exchange, share experiences, and provide support to individuals with long COVID. A single study was identified based on extending support to caretakers. The study reported that caretakers must be trained in important aspects of long COVID rehabilitation-respiratory, musculoskeletal, gastrointestinal, and preventing deep vein thrombosis. Other studies mentioned training family members and home caretakers of long COVID patients for improved rehabilitation.

Conclusion

Overall, the study findings highlighted the clinical guidelines, support services, and social support strategies long COVID patients and their caretakers.