Exploring the perceptions and experiences of community rehabilitation for Long COVID from the perspectives of Scottish general practitioners and people living with Long COVID: a qualitative study

Introduction

Long COVID (LC) in adults is a multisystemic condition described as signs and symptoms that develop during or after an infection consistent with COVID-19 and continue for more than 12 weeks, which cannot be explained by an alternative diagnosis.1 While global prevalence remains unclear, the WHO estimated that 34 million people may have experienced LC by 2022.2 In the UK, 1.9 million people (2.9% of the population) had self-reported LC as of March 2023.3

Rehabilitation for people with LC is recommended in practice guidelines1 4 and research,5–7 with UK guidelines recommending personalised and multidisciplinary services.1 Rehabilitation can be defined as intervention/s aimed at optimising function and reducing disability.8 By definition, rehabilitation is multidisciplinary and applied to a range of health conditions. While it is increasingly recognised that the signs and symptoms of LC share commonalities with other chronic conditions, including fibromyalgia and myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS)9 and that condition-specific rehabilitation services may further fragment already scarce resources,10 different approaches to LC rehabilitation have emerged. In England, service provision for LC has involved the development of specialised clinics, usually comprising multidisciplinary teams of medical, allied health and psychology professionals.11 In Scotland, LC rehabilitation is delivered in community (non-hospital) settings by generalist allied health professionals, with local variation in models of service delivery.12

People with LC have reported barriers to accessing healthcare and difficulties in navigating disjointed healthcare services.12–15 General practitioners (GPs) (synonymous with family physicians/doctors) are the first point of contact for people with LC and have an important role in ensuring that people receive appropriate treatment16 and referral to specialist services, including community rehabilitation, when needed.

There is a growing body of research on the lived experience of people with LC15 17 18 including barriers to accessing healthcare13 14 Until recently, however,15 none had focused on community rehabilitation. There is also a growing body of research on the role of the GP in providing care to people with LC, including the challenges of diagnosis, medical management and difficulty accessing community services such as rehabilitation.19 20

The current study aimed to add to the growing body of knowledge by exploring people with LC and GPs’ perspectives of accessing LC community rehabilitation in the Scottish context, due to the approach to LC in this setting being distinct from other parts of the UK.8 12 In this study, community rehabilitation was defined as rehabilitation10 delivered by any appropriate healthcare professional in a community setting; typically in clinics (outptaient/ambulatory) and people’s homes.

This work was embedded within a larger realist evaluation of LC community rehabilitation in Scotland, which identified low numbers of people with LC receiving community rehabilitation services.15

This study aimed to address two questions: (1) what are the perceptions and experiences of people with LC on accessing rehabilitation for LC? and (2) what are GPs’ perceptions and experiences of managing people with LC presenting with symptoms of LC that may be suitable for rehabilitation?

Methods

Study design

This was a qualitative descriptive study employing semistructured interviews with a convenience sample of people with LC and GPs in 4 of the 14 Scottish territorial health boards. The study followed an a priori protocol (online supplemental file 1) and is reported in keeping with the Consolidated criteria for Reporting Qualitative research (online supplemental file 2).21

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Participants

The four Scottish health boards were chosen for the realist evaluation study based on variation in population and accessibility (Scottish Government Urban Rural Classification 2020),22 LC prevalence and rehabilitation service delivery models. Two health boards were offering an integrated LC rehabilitation service (ie, integrated within existing community rehabilitation pathways), one had recently launched a dedicated LC community rehabilitation service, and one pre-existing dedicated LC service was closed to new referrals due to an increased referral rate combined with reduction in funding and therefore inability to staff the service (personal communication).

A convenience sample of people with LC residing in the four health boards was recruited via social media accounts (Facebook; X (formerly Twitter)) of the research team and their institutions and by Long COVID Scotland, a volunteer-led charity run by people with LC. Inclusion criteria for people with LC were community-dwelling (ie, not currently hospitalised); aged 18 or over; experiencing symptoms of LC (with or without a positive COVID-19 test), and experience of accessing or attempting to access healthcare services for possible rehabilitation. Those interested in the study contacted the research team, were sent detailed study information and provided informed consent (audio recorded) prior to taking part.

A convenience sample of GPs was recruited by email invitation circulated to eligible GP practices by the National Health Service Research Scotland Primary Care Network coordinator. Inclusion criteria were GP in a practice within one of the four eligible health boards and experience of patients with probable LC who may be suitable for rehabilitation. Several recruitment reminders were issued. We aimed to recruit 12–20 people with LC and 8–20 GPs.

Data collection

Interview topic guides (online supplemental file 3) were developed. While not formally pilot tested, they were refined by the research team in consultation with people with lived experience of LC, and informed by initial findings from our realist evaluation study15 and the wider literature in the field.

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During the period June 2022–January 2023, semistructured online interviews (Microsoft Teams) and one telephone interview were conducted by one research assistant (EH-W), who received training and supervision from KC and ED. Online interviews have been used for some time.23 While they became a necessity during the COVID-19 pandemic24 their potential is increasingly recognised.25 In this study, they facilitated participation across a large geographical area and flexibility for participants while avoiding unnecessary social contact for people with LC. No repeat interviews were undertaken. GPs were either in their workplace or homes when interviewed; people with LC were all at home. The female research assistant was a qualified nurse and had worked in critical care from the start of the COVID-19 pandemic (March 2020) until December 2021. She had no prior relationship with the GP practices or participants who all understood that she was employed as a research assistant.

Interviews lasted 17–47 min (mean 23±7.8 min) and were audio recorded. No other individuals were present during the interviews. No field notes were taken. Interviews with people with LC were transcribed by an external transcription service. Due to the homogeneity of the GP interviews, these were not transcribed but instead were listened to on multiple occasions by two researchers, a method informed by the wider literature.26 27 Neither transcripts nor audio files were returned to participants for comment or correction.

Data analysis

Data were analysed using the framework method (Gale et al),28 which proposes a matrix-based format to facilitate the sharing and management of data as a team, and is widely used in applied health research. Familiarisation with the data began by reading and re-reading the transcripts (people with LC) and listening/relistening to the recordings (GPs), making analytical notes that informed the ‘working analytical framework’ for each participant group.28 Although line-by-line coding is common in qualitative research, it is also possible to develop a framework without engaging in explicit coding29; due to the small scale and nature of the data we adopted the latter approach.

The framework method was used to construct matrices in Microsoft Excel, enabling the data to initially be summarised into broad categories. This was led by EH-W, in close consultation with two experienced qualitative researchers (KC and ED). The charted data were then analysed by interpreting within and between participants to identify concepts, which were subsequently grouped into themes, and finally, overarching themes consisting of data from both participant groups. This was an iterative process involving multiple researchers (KC, ED, JC, TT, JS and ES) and the wider study team, with subsequent refinement until there was consensus that the data had been comprehensively analysed.

As with our previous study,15 we did not seek participant feedback directly on the findings. However, we presented the findings in a webinar attended by health professionals and people with LC, who endorsed the findings, reporting that the analysis reflected their personal experiences.

Patient and public involvement

Two members of the public with lived experience of LC were core members of the study team (AL and JO). Both contributed throughout the study and were integral to its success, helping with design and identification of important issues to explore. They codeveloped study materials and interview topic guides and contributed to analysis and interpretation of findings.

Discussion

We explored the issue of access to community rehabilitation for LC from the perspectives of people with LC and GPs in four Scottish health boards. We identified several systemic challenges for LC service delivery which related to access, siloed services, limited resources and a perceived lack of holistic care, causing frustration for both GPs and people with LC. Similar challenges have been reported in the international qualitative literature from the perspectives of people with LC30–32 and healthcare professionals.33 To our knowledge, this is the first study to focus on community rehabilitation in Scotland. Although a minority of GPs expressed scepticism about LC and the need for rehabilitation and other services for this patient group, people with LC and most GPs agreed on the need for accessible, person-centred services and support, in keeping with previous research recommending collaborative support mechanisms17 and improved care coordination for people with LC31 and recent findings on accessing LC rehabilitation in Canada.34

Regarding community rehabilitation specifically, we found that (1) some people with LC and some GPs lacked knowledge on the potential role of community rehabilitation in the management of LC; (2) having prior knowledge of rehabilitation or being a healthcare professional appeared to facilitate access to community rehabilitation and (3) people with LC who had received rehabilitation generally found it beneficial. Due to the lack of knowledge and difficulty accessing rehabilitation, however, people with LC had accessed a range of other services and sources of support, with varying success.

The negative impact of LC on the health and quality of life of our study participants is in keeping with other studies35 and demonstrates the influence of LC on a sample living in Scotland almost 3 years on from the start of the pandemic. The persisting prevalence and impact of LC on people’s lives further emphasises the need for support and services such as community rehabilitation to be available, in keeping with recommendations and research findings.1 5 7 36 37

People with LC should have access to personalised and multidisciplinary rehabilitation1 and such rehabilitation is reportedly available throughout Scotland12 delivered by a variety of service models. This study highlights some potential reasons for the mismatch between recommendations, reported service availability and low numbers of people with LC accessing community rehabilitation.15

Lack of GP knowledge regarding community rehabilitation and its potential role in LC may, in part, be attributed to the nature of LC as a new condition that health professionals are still learning how to manage. Previous research has reported a lack of GP understanding of the role of rehabilitation professionals in the management of conditions commonly encountered in primary care; for example, physiotherapists role in osteoarthritis management.38 Internationally, public understanding of the role of occupational therapy has been reported as limited.39 Therefore, in the context of a new condition with an evolving evidence base, it is perhaps not surprising that GPs and people with LC may have limited understanding of what rehabilitation professionals can offer to this patient population. The reluctance to promote the availability of services in some areas, due to pre-existing resourcing and anticipated demand-capacity issues may also have limited access to LC rehabilitation.15

Issues with promotion of services, clarity of pathways and interdisciplinary communication between GPs and rehabilitation professionals have been reported previously.38 40 The findings of this study suggest that further improvements in communication and collaborative working35 may be required to enhance access to community rehabilitation for people with LC. Indeed, the finding that prior knowledge of rehabilitation, and being a healthcare professional facilitated access to community rehabilitation is further evidence that successfully navigating the referral system is challenging.

The findings of people with LC who had managed to access community rehabilitation being satisfied with it, and GPs wanting a LC service to refer patients to are in keeping with previous research.19 The challenge not only lies in availability of such services, but clearly in people with LC and GPs awareness of the benefits of these services, their active promotion, and clear and timely accessibility of rehabilitation services. There is, therefore, a need to overcome the systemic challenges to accessing timely rehabilitation reported in this study. Considering the ongoing nature of living with LC, these challenges are likely to continue beyond the time and resource constraints of government funding provision for existing LC rehabilitation within rehabilitation services that were already historically underfunded and considered ‘Cinderella services’.15

Lack of capacity in the UKs rehabilitation services is not a new phenomenon41 but it has arguably been further highlighted since COVID-19.42 Worldwide, there is a renewed focus on the importance of rehabilitation and the size of the unmet need.8 43 Similar findings would arguably have emerged if this study had focused on people with other chronic conditions suitable for community rehabilitation such as fibromyalgia, ME/CFS, cardiovascular disease and stroke. While focused on LC, this study provides additional evidence of the need for increasing capacity in community rehabilitation services.42

Strengths and limitations

This study explored the issue of accessing LC community rehabilitation in the Scottish context and included the perspectives of those referring and potentially being referred. One researcher conducted all interviews to ensure consistency and multiple researchers were involved in analysing and interpreting the data, including people with lived experience of LC. There are, however, some limitations.

The sample was one of convenience which limits generalisation, and although we recruited to target for the GP sample, there was under-representation from the two health boards with dedicated LC services. Therefore, the data largely represent the views of GPs from health boards where LC services were integrated into existing community rehabilitation services; it is possible that GPs views of dedicated LC services may be different.

We recruited a mostly female sample of people with LC, and mostly from health boards with integrated or a halted dedicated LC service. Their views on accessing LC services may, therefore, have been biased. Although LC has been reported as more common in females,44 the under-representation of males in this study, as with others in the field,17 is a limitation that needs to be addressed in future research. Our sample size was small but similar to previous studies exploring LC and its management.17 33 36 Recruitment of people with LC was likely limited by our reliance on social media and one LC charity; however, both mechanisms had the potential to reach many people.

We cannot claim data saturation. However, we are confident that we achieved adequate data sufficiency41 for the findings to reflect some of the key issues within each participant group. The perspectives of men with LC and people accessing dedicated LC rehabilitation services require further exploration.45 We conducted interviews online with one by telephone, which may have affected rapport and depth of interaction, but provided flexibility for participants and the research team. The GP data were not transcribed, which is commonly seen as a routine step in qualitative studies. Finally, participants did not check the transcripts or findings, but healthcare professionals and people with LC did comment on the findings at an open workshop.

Implications for practice and research

There is a need for greater understanding by the public, GPs and other potential referrers of the role of community rehabilitation professionals in the management of LC. There is an equally important need for community rehabilitation services to be well promoted and accessible to the people with LC for whom they may be appropriate. LC is still a prevalent condition whose impact on individuals can be profound. The need for community rehabilitation for people with LC is likely to persist. Service providers should, therefore, consider availability and accessibility of LC rehabilitation and ensure adequate interprofessional communication and collaboration to enhance the experience for people with LC.

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