Navigating uncertainty: occupational therapists’ experiences of Long COVID management in Germany, Austria and Switzerland

Abstract

Purpose

Long COVID presents global challenges for healthcare professionals. Occupational therapists responded by seeking effective treatment strategies. The approaches of occupational therapists supporting long-haulers in German-speaking countries remain under-explored. The purpose of this study is to explore how occupational therapists in Germany, Austria and Switzerland navigate and apply profession-specific strategies in the new clinical landscape of Long COVID care.

Materials and Methods

This study used qualitative-descriptive design and content analysis to extract insights from seven semi-structured interviews with occupational therapists in inpatient and outpatient settings from three countries.

Results

Four overarching themes emerged: how Long COVID was encountered within the scope of occupational therapy, the multifaceted repertoire experts used to support long haulers, triumphs and challenges that emerged in Long COVID treatment, and recommendations and opportunities for occupational therapy practice. The results underscore the complex support needed for long-haulers, achieved through a multifaceted occupational therapy repertoire, incorporating client-centred, occupation-focused, and context-referencing strategies with shared decision-making and collaborative therapy planning.

Conclusions

Occupational therapy concepts, with their focus on human occupation, may offer new treatment options and strategies for managing emerging conditions such as Long COVID.

IMPLICATIONS FOR REHABILITATION

• Long COVID-Rehabilitation

• Symptom management in relation to the clients’ occupational repertoire improves participation and social function in everyday life.

• Actively involving clients in the therapy process through shared decision-making enhances tailored rehabilitation.

• Contextualized interventions take into account clients’ needs and concerns, as well as the requirements of their social and professional environment.

• Teletherapy can be a pragmatic solution to improve the accessibility of rehabilitation services for those affected by long COVID.

Keywords:

• Intervention development
• long-haulers
• long-/Post-COVID
• occupational therapy
• treatment
• qualitative content analysis

Introduction

Long COVID globally challenges healthcare systems and social support structures [1,2]. Due to the challenge in securing a diagnosis and the lack of uniform guidelines, it is essential to understand how healthcare providers manage the health conditions of those affected [3]. This paper uses the term “Long COVID,” also known as “post COVID condition.” It is defined as the persistence or exacerbation of symptoms after the acute illness phase of SARS-CoV-2 for more than four weeks and which endure for at least two months without any other apparent clinical explanation [4]. The term Long COVID has been introduced by individuals affected with long-term symptoms following a SARS-CoV-2 infection who shared their post-SARS-CoV-2 related health challenges on social media and named themselves “long-haulers” [5,6]. Through this, it acknowledges the epistemic authority of those affected who have contributed to the scientific discourse by sharing their experiences [7]. While the precise number of those affected remains uncertain, estimates suggest that over 17 million people in Europe may have experienced Long COVID during the initial two years of the pandemic [8]. Research suggests that approximately 10–20% of individuals infected with SARS-CoV-2 develop persistent symptoms. Often, these are manifold and may include fatigue, general discomfort, changes in olfactory and gustatory perception, shortness of breath, and cognitive constraints [8–11].

As a result of the variety, severity, and fluctuation of symptoms, many long haulers experience substantial disruptions in engaging in meaningful occupations, fulfilling relevant professional or social roles, and creating a sense of self [12–14]. A study of 430 people with Long COVID showed that 97% perceived constraints in the performance of productive activities, 93% in leisure activities and 53% indicated performance issues in self-care [15]. A German survey of 1457 affected individuals reveals that 55% of respondents were unable to work, and 94% of those who worked reported limitations in their work performance due to varying symptoms [16]. Moreover, a qualitative study involving 23 participants in Germany detailed affected individuals’ experiences of everyday constraints, which included disruptions in household chores, childcare, and engaging in leisure activities, as well as uncertainty in their identity due to the loss of meaningful roles in daily life [13].

Although research increasingly focuses on identifying healthcare options in the field of comprehensive care for those affected, there is little information on how occupational therapists manage the still-emerging support needs in their practical approach [12,17–19]. Current guidelines recommend integrated multidisciplinary rehabilitation at various service levels to address the multisystem impact of Long COVID [18,19]. While several studies and international guidelines acknowledge occupational therapists as part of multidisciplinary care teams in Long COVID rehabilitation [20–24], there is a lack of knowledge of the specific occupation-focused approaches. As allied health professionals, occupational therapists focus on facilitating individuals, groups, and populations to maintain, reenter or adopt meaningful daily activities commonly referred to as “occupations”. Occupations encompass a spectrum of activities such as daily living activities, instrumental daily living activities, health management, rest and sleep, education, work, play, leisure and social participation [25–27]. Coordinating all these aspects of human occupation in therapy, and promoting health and well-being, occupational therapists support clients in fulfilling their various societal roles, such as being a parent, employee or spouse [28].

During the pandemic, occupational therapists contributed their specialized skills and experiential knowledge in interdisciplinary healthcare teams, providing treatment to COVID-19 patients in critical and acute care settings. [9].

However, the literature on how occupational therapists provide treatments to long haulers remains sparse. In a case report, Wilcox and Frank (2022) describe a client’s encounter with COVID-19 and offer a comprehensive outline of outpatient occupational therapy interventions to address the enduring constraints impacting her everyday roles, schedules, interests and activities [10]. The case report illustrates how occupational therapy can assist long-haulers to self-manage symptoms fostering independence within their home, community, and workplace environments. A Swiss research team investigated an occupational therapy-based Energy Management Program (EME) in individuals with Long COVID, initially developed for clients experiencing fatigue associated with multiple sclerosis and chronic disease-related fatigue [29]. Moreover, a global survey on current occupational therapy practices for COVID-19 and Long COVID reveals that occupational therapists employ a range of interventions, including those related to enhancing participation in daily living activities, cognitive function, fatigue management, and mental health functions [18].

Research on occupational therapists’ approaches and hands-on experiences with long haulers may inform structured methodologies and tailor profession-specific interventions. In this study, we explore the experiential knowledge, practical strategies and approaches used by occupational therapists in Germany, Austria and Switzerland. Furthermore, our study aims to add to the existing literature by identifying and examining practice strategies to support this novel client population.

Methods

Methodological considerations

This study is positioned within an interpretive paradigm, grounded in an epistemological stance that recognizes knowledge and understanding as subjective and ontologically recognising the potential of diverse interpretations of reality among individuals [30]. Participants’ subjective experiences and perceptions are understood as diverse realities shaped by their contexts, work environments, and occupational therapy training. Thus, this study employs a qualitative descriptive methodology, with semi-structured interviews favoured for participants to express their experiences and to explore the novel topic of Long COVID management in their terms [30, 31].

Researcher’s positionality

We, the authors, are based in Germany, and we represent professional roles in occupational therapy, sociology, social pedagogy, public health, and medicine. We are part of a broader research initiative for an occupational therapy treatment concept for Long COVID [32]. The study was led by the first author (CM), an occupational therapist pursuing her doctorate who identifies as female. CM was responsible for recruitment, interviews, data analysis and results dissemination. The second author (IES) identifies as a female social pedagogue, and the third author (TS) identifies as a male sociologist. They both contributed to data analysis and provided critical insights in debriefing sessions to enhance real-time data quality and reliability. Our collaborative effort aimed to capture varied perspectives on occupational therapy for individuals with Long COVID, emphasizing the importance of allowing participants to express their diverse experiences and opinions.

Study setting and design

This study was conducted between May and September 2022 and as part of the ErgoLoCo study that aimed to develop and pilot an occupational therapy intervention concept for online delivery (#DRKS00029990). Following the Medical Research Council Framework for complex interventions, we aim to incorporate firsthand experiences from occupational therapists to inform the development [33]. Prescriptions from general practitioners typically regulate occupational therapy access in all three countries [34–36]. However, the treatment duration and frequency vary between the countries’ health systems regulations and the respective clinical setting.

Qualitative content analysis was chosen for data analysis as it provided a reliable structure to analyze the transcripts [37]. To embrace various experiences and enhance our study’s rigour, we aimed to sample participants who could purposefully represent diverse occupational therapy approaches in their respective practice settings across all three countries, albeit without claiming representativeness.

Ethics

The study was approved by the Institutional Review Boards of Hannover Medical School (DEFEAT Corona 9948_BO_K_2021) and the University Medical Center Göttingen (15/8/22 U). Prior to inclusion, participants received information describing the study’s aim, data-collection procedures, and how the researchers planned to use the data. Participants provided written informed consent before the online individual interviews were conducted. Interviews were conducted using the video conferencing software Zoom (Zoom Video Communications, Inc., San Jose, CA,USA) allowing participants to choose a convenient location for their participation. Participants were explicitly informed of their right to refrain from answering questions, end the interview at any time, or withdraw from the study without stating reasons or experiencing consequences. All interviews were audio-taped using an external audio recorder and transcribed verbatim. All transcripts were saved on a password-protected external hard drive and a password-protected cloud, which were only accessible to the core researchers of the study (CM, TS, IES). Results are presented in accordance to Consolidated Criteria for Reporting Qualitative Research (COREQ) [38].

Sampling

Participant recruitment took place between May and July 2022 using diverse strategies, including contacting the researchers’ professional networks and reaching out to occupational therapy associations in Germany, Austria, and Switzerland by sending information about the study via e-mail and a pdf-flyer. Snowball sampling was applied by having the professional groups associated with these addresses send this information to their members and other potentially interested individuals. The associations published the digital information letter on their websites or forwarded it to relevant expert groups (e.g., the DVE Specialist Committee for Occupational Therapy in Neurology). Criteria for participation were established to ascertain that participants possessed professional treatment experiences with clients with Long COVID were: (1) being an occupational therapist for at least one year, (2) working currently as an occupational therapist in Germany, Austria or Switzerland, (3) demonstrating experiences in the occupational therapy treatment of at least two individuals affected with Long COVID. The exclusion criteria were: (1) having no professional license as an occupational therapist or working experience less than one year, (2) having less than two treatment experiences with Long COVID clients.

Participants

Nine interested individuals responded to the recruitment letter by contacting the first author via e-mail or telephone. Participants were asked to complete a pre-screening questionnaire on their occupational therapy expertise with Long COVID clients, working context, and sociodemographic characteristics to confirm eligibility for participation. Two individuals were excluded due to lack of treatment experience of Long COVID, or not completing the entire questionnaire. Overall, seven individuals met al.l eligibility criteria and consented to be interviewed. Participants’ characteristics are depicted in Table 1. Given the novelty of Long COVID syndrome, the treatment of affected individuals was new to all experts at the time of study inclusion.

Table 1. Characteristics of the participants.

Participant	age	Sex	Country of practice	Setting	Degree	Therapeutic field	Number of supervised Long COVID clients
P1	28	Female	Germany	Outpatient	Vocational Training	Neurology	2
P2	43	Female	Germany	Outpatient	Bachelor	Neurology Orthopedics	2
P3	38	Female	Germany	Outpatient	Vocational Training	Neurology Orthopedics Psychiatry	2
P4	57	female	Switzerland	Outpatient	Master	All fields	4
P5	31	female	Switzerland	Inpatient	Bachelor	Neurology	4
P6	45	female	Switzerland	Inpatient	Bachelor	Rheumatology	4
P7	38	female	Austria	Inpatient	Vocational Training	Neurology Orthopedics Psychiatry	4

Interview guide and data collection

The interview guide was developed using the Interview Protocol Refinement Framework (IPR) recommended by Castillo- Montoya [39]. The development process followed four phases: (1) aligning the interview questions with the research question, (2) construction of an inquiry-based conversation, (3) receiving feedback on the interview guide, (4) piloting the interview guide and possibly adapting it. This procedure was used to strengthen the reliability of the interview guide and is intended to improve the data quality [39]. Questions were, for example: “What were important topics or issues in the treatment with long haulers?” “Please describe how you approached treating clients with Long COVID?” “What were the challenges in the therapy, and how did you deal with them?” During the interview, the researcher (CM) encouraged the participants to describe their experiences in detail and give some best practice examples concerning their therapeutic approaches they applied in treating Long COVID clients. This was facilitated by picking out phrases and keywords used by the participants and requesting more details of their experience. All interviews were conducted in German language between June and August 2022, and lasted between 30 to 55 min. The first author conducted the interviews and took field notes during the interviews to document her thoughts, reflections, and interpretations of the participants’ explanations. This was done to ensure that her assumptions about helpful or necessary approaches in the occupational therapy treatment of Long COVID clients did not distort the analysis of the data. Interviews were audio-recorded using an external audio recorder and transcribed verbatim by a professional transcription service regarding content semantics [40].

Data analysis

The first, second and last authors, verified the transcripts for accuracy and conducted an iterative and discursive qualitative content analysis following Kuckartz’s methodology [37]. Firstly, they repeatedly reviewed the transcripts identified, highlighted important text passages, and generated memos and initial case summaries. Then they developed the main thematic categories by combining deductive and inductive categorization. Some main categories were deductively derived from the interview guideline and the research question, and others were developed inductively from the material. Following this, all the material was coded using the main categories and subcategories were determined based on the material. Then the complete material was coded using the differentiated categories in a second coding process. For quality assurance, the method of consensual coding was applied [41]; the first, second and last authors independently coded the material, discussed the results, and formed a consensus. A codebook was created with category definitions, coding rules, and example citations during this process.

Table 2 provides an excerpt of the categories the researchers used for the final analysis. They conducted a category-based evaluation along the main categories and subcategories. For this purpose, the first author created category-specific summaries and then reduced the material until four overarching themes emerged from the data [37]. MAXQDA software version 20.0.8 (VERBI Software GmbH, Berlin, Germany) was used for data analysis. To minimize distortion of the nuances and meanings of the participants’ literal contributions, the third author, whose native language is English, translated the quotes used to present the results in this article.

Table 2. Excerpt of categories used for data analysis.

Main categories	Subcategories	Overarching Themes
Work setting and expertise	1.1 Expertise in Long COVID-treatment	Encountering Long COVID within the scope of occupational therapy
Long COVID clients	2.1 Complaints and restrictions
Occupational therapy practice frame	3.1 Concepts and Methods 3.2. Assessments and analysis of constraints 3.3. Interventions	Occupational therapy repertoire with long haulers
Experienced success or disappointments during interventions		Triumphs and challenges in Long COVID treatment
Challenges in the treatment of Long COVID clients
Treatment recommendations	6.1 Recommendations for the use of digital formats	Recommendations and opportunities for occupational therapy practice

Results

Four overarching themes derived from the category-based data analysis (Table 2): (1) encountering Long COVID in the scope of occupational therapy, (2) occupational therapy repertoire with long haulers, (3) triumphs and trials in Long COVID treatment, and (4) recommendations and opportunities for occupational therapy practice. We provide more detailed descriptions in the subsequent sections.

Theme 1: Encountering Long COVID within the scope of occupational therapy

The participants in this study reported that they had encountered a growing number of Long COVID clients referred by medical professionals since late 2020. Given the novelty of the syndrome, most of them illustrated how they found themselves in a situation where no evidence-based guidelines or indications for effective occupational therapy treatment were available in the German language, which caused uncertainty and the wish for guidance and support by professional occupational therapy associations and policymakers. Managing this situation proved challenging for most participants especially when increasing client demands and the expectations placed on healthcare providers required rapid solutions for building support structures for the new clientele. Participant 3 illustrated how she felt frustrated under the pressure of this uncertain situation and missing guidance.

You want to contribute and create offers, but when there’s no information, it’s frustrating. And then I approached the association, actually with a rather nasty email, saying that it can’t really be, because I’ve seen that there are already lots of things in Holland and England. And why hasn’t anything been summarized in Germany yet?. (P3)

Despite uncertainty and frustration, participants proactively sought information from international occupational therapy associations and affected individuals. They exchanged with colleagues who had experiences treating initial Long COVID clients in their professional fields, leveraging their expertise as occupational therapists.

It was difficult to find anything at all. We then somehow […] researched on the internet and also asked other practices whether they had any experience, or even friends who were affected. Then, we used this and the things we already had to try and find ways to offer treatments. (P2)

Participants seized the opportunity to actively contribute to developing support opportunities in their practice contexts. Consequently, and in parallel to everyday operations, all of them engaged in developing treatment ideas and structures for clients with Long COVID where they worked.

I’m working here at the hospital, and I set the whole thing up; since May 2021, we’ve had a Long COVID consultation. And that means that patients first go to the doctors and then they come to us for occupational therapy on an outpatient basis. (P7)

The participants encountered clients with long aged between 20 and 60 years. They portrayed most of them as achievement-oriented persons, ambitiously aiming to expedite their recovery and regain functional and occupational capacity in their daily lives.

Actually, all the patients I’ve had so far were very performance-orientated people before they had corona […]; work was very important to them, or […] especially mothers with small children who also work. (P7)

All participants observed that a range of symptoms, including concentration difficulties and physical and mental fatigue, impeded clients from sustaining focus during brief performance periods. For instance, clients encountered difficulties in routine activities like cooking, work-related administrative tasks, and grocery shopping, often resulting in despair and disorientation. Participant 5 described a client’s grocery shopping experience as particularly challenging:

[…] pushing the shopping cart and looking at her mobile phone simultaneously doesn’t work. And until she has everything, she always has to go back five times because she forgot something in the back aisle. So she goes back and forth and back and forth. And then she’s at the cash register and forgets that she’s supposed to put her things on the belt […]. (P5)

Overall, the substantial burden of Long COVID symptoms often resulted in clients becoming unable to sustain or combine meaningful roles and occupations. One participant illustrated the case of a client who, previously managing multiple demanding roles including work, family support, and motherhood effectively, now experienced being hindered in her ability to engage in family interactions or leisure activities:

Often, when she goes to work, she is exhausted in the evening. She comes home at five, changes her clothes and then goes to sleep. Because otherwise, she can’t manage the work, […] then she can’t read the child a good night story, cook dinner, do leisure activities. (P5)

How clients assessed their situation seemed to relate to their values and habits and how long their social environment perceived Long COVID as a health issue. For example, a participant from Switzerland, where there is no job protection during illness, mentioned: “People really have a kind of sword of Damocles hanging over them, always this: You can do it, you have to succeed; otherwise they have a completely different problem.” (P6). Furthermore, she emphasized that characteristics and clients’perceptions of the severity of challenges were intricately linked to their individually established occupational routines: “As usual in occupational therapy, as different as people’s everyday lives are, so different are the challenges.” (P6)

Theme 2: Occupational therapy repertoire with long haulers

Regarding the occupational therapy process for Long COVID clients, all participants followed standard phases, including evaluation, intervention, and sometimes outcome measurement. They commonly used the Canadian Occupational Performance Measure (COPM) for initial assessment of occupational performance problems. Some participants also incorporated additional questionnaires, tests and protocols such as the Modified Fatigue Impact Scale or Montreal-Cognitive-Assessment (MoCa) to assess functional limitations. Only one participant conducted a thorough activity analysis to pinpoint an occupation’s specific demands, which the client deemed essential during the initial COPM assessment, and indicated a shared decision-making process in therapy planning.

And then I went into the kitchen with her and she […] brought an easy recipe from home […] and that’s exactly what she did and I observed […] and wrote down how she proceeded, how long she could stay focused on the activity. Exactly, and then we discussed it together afterwards […] and then wrote down again […] what we had to work on so that she could do the activity again. (P1)

For most participants, the assessment, goal setting, planning, and implementation of interventions appeared intertwined and flowed seamlessly. While occupation-focused and activity-based approaches were common interventions, educational methods, particularly psychoeducation and reflection to develop pacing and symptom management skills, were emphasized, as shown in Table 3.

Table 3. Occupational therapy intervention approaches and strategies.

Therapeutic use of intervention	Therapeutic strategies	Examples of applied strategy	Purpose of use	Expert
Education	Reflection	Week Schedule	Identifying the clients’ occupational profile	E1, E4
		Therapy Journal	Resource-oriented assessment and evaluation of the situation	E1, E2
	Psycho-education	Discussion, information material Pie chart of daily occupations	Enabling the client to understand how Long COVID influences the client’s occupational profile	E6, E4
	Pacing and symptom management	Energy Protocol	Facilitating energy management	E1, E4., E6, E7
		Break Schedule	Facilitating break management	E2, E3, E4, E5, E6, E7
Occupations and activities	Occupation- and context-focused	Applying coping strategies to daily work situations	Adapting professional strategies to work /task requirements	E6, E5
		Preparing and practicing a conversation with an employer	Learning how to talk to colleagues and employers and negotiate about changes that help sustain workability	E4, E6
	Activity-based	Simulation of office situation in the therapy room	Developing performance skills and performance patterns	E5
		Baking a cake in the therapy kitchen	Developing performance skills and performance patterns	E1
Training	Functional training	Cognitive training exercises	Analysis and training of cognitive skills	E2
Advocacy	Consult and deputize	Talking to employer	Informing about clients’ needs and negotiating adaptations	E4

Theme 3: Triumph and challenges in Long COVID treatment

Participants presented triumphs and challenges reflecting multifaceted approaches they employed to navigate the intricate challenges confronting clients in their everyday doing. Most of them perceived the implementation of energy management strategies as helpful to facilitate clients in better understanding their energy levels and how Long COVID influenced their daily activities. For example participant 3 used weekly plans and energy profiles “[…] to be able to see, okay, how high is the energy over a day and also over a week” (P3) and then collaboratively identified and adapted clients’ daily routines for optimal energy usage.

Furthermore, participants incorporated educational elements into therapy sessions, including tools like traffic light systems to monitor energy levels. Participant 4 emphasized the benefit of educating clients about fatigue and stressors, which usually helped clients to understand “[…] how, for example, fatigue works […], why stressors have to be reduced, […]” (P4) allowing them to apply strategies for symptom management independently. In accordance, participant 6 found it helpful to use visual representations, like a pie chart, to support clients’ grasp of how their time and energy allocation needed to change in light of their condition:

What helps […] very well is to draw a kind of pie, simply a circle as a pie, and to say: Okay, in the past, when these were your 24 hours, you slept for eight hours, so a third. And then you worked for 10 hours, over a third. And the rest you did a little bit of self-care, a little bit of caring tasks and a little bit of free time. Okay, and now […]? Well, if you go to work for 10 hours like you used to, you can’t wash, brush your teeth, eat or anything like that. All of that is no longer possible. And then they realize that they actually need MUCH more time for self-care at the moment. (P6)

Some participants transitioned to occupation-focused interventions by integrating clients’ work-related concerns into therapy. Participant 6, for example, assisted a client who was a teacher in modifying her teaching approach to accommodate her energy levels:

Well, if she’s standing in front of the class and can’t go on after half an hour and she’s supposed to teach for three quarters of an hour, she can’t just take out her yoga mat and do stretching exercises with teenagers. But in her case, it was possible to do group work. She can say: You do this now. She can sit down. She can’t lie down, that was clear. But she could sit down. That has already helped. (P6)

Participants strived to create realistic simulations within therapy rooms to mimic clients’ daily contexts. For example, one participant supported a client in the therapy kitchen to address challenges related to cooking. Participant 5 used goal-orientated, activity-based approaches to replicate cognitive demands similar to those in the client’s workplace:

And then I also try to create a setting in therapy (like at work), […] And then distractors are built in and then the radio is turned up and then I make a phone call on the side, or ask a colleague to come in and ask me something. (P5)

While participants mentioned that clients expressed immense gratitude for their efforts in providing tailored treatment to address their Long COVID concerns, they also encountered challenges in supporting these individuals due to the multifaceted, intangible, and uncertain nature of Long COVID symptoms.

One profound challenge that participants perceived was the uncertainty surrounding Long COVID prognosis and its unpredictability regarding unforeseeable increases in symptom severity. Thus, clients’ regular attendance at therapy sessions was often disrupted and made it challenging to maintain continuity in therapy as noted by Participant 5:

And if I then somehow had two or three good therapy sessions and then I hear again. Well, the therapy has been cancelled. Patient had a crash again, […] And we often can’t influence that at all. (P5)

Encouraging clients to reduce their daily activities to facilitate recovery was met with resistance, particularly from those with high-performance expectations for themselves and societal pressures. Participant 4 highlighted it as challenging when clients’ found it difficult to accept reduced performance and independently increased their activity levels without prior negotiation, which could create conflicts in the following structured therapy plans:

What is also a challenge is the resistance that sometimes comes naturally in the phases of illness and processing, this refusal to accept things. And then we have to let them get on with it […]. It’s clear to us that they’ll come back two weeks later and say: "No, I’ve crashed again. (P4)

Participants needed to adapt to clients’ well-being shifts, offering mental support and hope while encouraging patience and self-understanding. Moreover, they perceived themselves as crucial in providing mental and emotional support in this complex landscape, often becoming bearers of hope. They had to empathize with clients’ frustrations and uncertainties while adapting to the unpredictable nature of Long COVID. Participant 3 mentioned: “And to keep them motivated […] but also not to take away their hope, that’s something that’s relatively often difficult, no, a challenge in this work.” (P3)

Theme 4: Recommendations and opportunities for occupational therapy practice

The participants proposed how occupational therapy can support Long COVID clients in their recovery journey. They stressed using client-centred approaches that consider individual situations, needs and daily circumstances in therapy planning. Moreover, they highlighted the importance of respecting the clients’ new challenges and cautioned against hasty labelling or interpreting of Long COVID symptoms as other conditions like depression or cognitive deficits. To avoid this, most participants advocated for in-depth occupational therapy assessments to establish suitable occupation-related goals with clients collaboratively. In this regard, participant 6 stressed enabling clients to develop their goals post-assessment. They emphasized the need for goals to align with clients’ daily lives, moving beyond standardized self-training tasks within or between therapy sessions. This approach nurtured self-determination and independence and ensured progress in their pursuits.

And I think it’s very important to let clients set their own goals that are useful to them in everyday life […] and not just give them ready-made self-training tasks […]. Instead, they should express and set their own goals or things that they will do and try out until the next time […] and learn to set them realistically […] and that they formulate something that they are confident about, that makes sense. And that they notice quick, small steps of progress. That they also notice independence. (P6)

Participants also emphasized shared decision-making in enhancing self-efficacy and fostering a sense of coherence by incorporating client’s insights and expertise to their situation. Participant 5 mentioned:

If they are involved in this process […], if they can somehow help to shape it themselves and can somehow make suggestions themselves as to what would be helpful for them. Then it usually works better than if it’s just me suggesting something. (P5)

Another recommendation participants made was to take an active role in guiding clients to differentiate between reliable information and misinformation in the media, “[…] And just to support (them) and help, filter out what information is maybe scientifically proven and what information is more likely to be fake news” (P6). This assistance may support clients and provide them with trustworthy guidance, enhancing trust in the therapist’s expertise and offering direction towards helpful sources alongside therapeutic support.

Additional recommendations participants added included the use of digital elements in therapy. For instance, participant 1 highlighted the benefits of video assessments for occupational performance issues in clients’ homes or at work:

I think it’s very important, for example, that a client (who) always finds housework difficult […] films herself while she’s doing the housework, for example, […] so that I can just see that. In the practice, it’s always a bit difficult, they tell me what it’s like at home. But it’s still different than if I only do the activity at home. I can simply be there during an online therapy session. (P1)

Participant (P6) stressed that teletherapy could add to efficient treatment opportunities for Long COVID clients, especially when they are unable to commute due to severe Long COVID symptoms.

[…] I think it makes sense because a lot of patients say that travelling to therapy is so exhausting that they would actually like to have more of an online service […]. So from that point of view, I think it would be good to offer something that they could use from home. (P6)

To enhance the transition from therapy sessions to clients’ daily lives, participant 3 suggested developing apps as a viable means for clients to apply the strategies learned during therapy sessions at home. She suggested that an app with customizable strategies and break planning could benefit both clients and therapists: “[…] if there was such an app with strategies, for example, which one could put together independently and could also plan breaks.” (P3)

Discussion

This qualitative study aimed to explore the experiences of 7 occupational therapists in Germany, Austria and Switzerland in treating individuals with Long COVID. Our findings revealed the complexity of supporting long haulers in facilitating engagement and participation in meaningful everyday occupations in diverse occupational therapy settings. Furthermore, the findings highlight a large spectrum of client-centered and context-referencing strategies employed by the participants that helped support Long COVID clients. Moreover, the results revealed several challenges the experts faced, rooted in clinical uncertainty a need for additional knowledge concerning Long COVID management.

Navigating uncertainty

Several studies illustrate experiences of clinical uncertainty in managing and treating Long COVID among healthcare providers. They highlight the lack of evidence-based information sources and consistent guidelines as a key barrier to facilitating prompt diagnosis and referral of clients to specialist clinicians and therapists [10,15–17]. In line with these findings, this study confirms that uncertainty predominantly rooted in a global lack of knowledge and experience in Long COVID management, coupled with the perception of immense pressure to rapidly become experts in a field where policymakers and professional associations could not offer valid guidance. In this regard, the results underscore the substantial responsibility of health care providers in addressing the global uncertainties associated with establishing essential health care structures for Long COVID. They also highlight the importance of collaboration and participatory development of support approaches involving health care providers and long haulers.

Prior work points to the multiple challenges in identifying comprehensive care options for individuals affected by Long COVID, such as varied and prolonged symptomatology, the need for interdisciplinary approaches, and gaps in understanding the condition’s mechanisms [3,42]. The findings of this study confirm the existence of fundamental challenges in Long COVID management, stemming from the combination of persistent symptoms observed in clients. Symptoms, such as trouble concentrating, anxiety, or fatigue associated with excessive stress are identified as common functional difficulties, consistent with reports from other studies [1–3]. Beyond recognizing limitations in body function caused by Long COVID, the study results offer deep insight into the consequences of Long COVID from an occupational perspective by clarifying long haulers’ disruptions and losses in their occupational routines, role responsibilities and occupational identity.

Therapeutic proficiency

In contrast to studies from primary care [17,19], this study’s findings demonstrate that occupational therapists were immediately capable in their field despite the absence of diagnosis-specific guidance. For example, they were adept at employing theory based, methodologically sound, occupational therapy specific approaches aimed at facilitating the (re)acquisition of engagement and participation in meaningful occupations. They professionally navigated their uncertainty given the absence of guidelines by acknowledging clients with Long COVID as co-contributors throughout the therapeutic process. This approach involved collaboratively developing a tailored treatment pathway by utilizing various tools from occupational therapy models and approaches such as the Occupational Therapy Process Framework, the Canadian Practice Process Framework or Kielhofner’s Steps of Therapeutic Reasoning [43–45]. Participants supported their clients in examining their life situations across different dimensions, drawing conclusions, and devising effective strategies for managing them. Our study highlights occupational therapists’ extensive opportunities and competencies for this distinctive form of collaborative engagement in Long COVID rehabilitation. Study participants incorporated techniques to enable clients to establish symptom and energy-management strategies to cope with Long COVID symptoms in everyday life, as recommended in established guidelines for adjacent diagnoses and issues such as fatigue, and previously successfully integrated within occupational therapy [18,20,21]. The findings show that successful therapy outcomes were not necessarily linked to a reduction of Long COVID symptoms through learned management strategies. Instead, success was assessed based on how the clients could apply these strategies during meaningful occupations in specific contexts of their lives, such as the workplace. In this regard, our research indicates the importance of including a client- and context-centered perspective on rehabilitation in Long COVID- recovery, which integrates multilevel concerns and requirements that an individual has to deal with in everyday life. These findings align with the holistic nature of occupational therapy practice, independent of symptoms and diagnosis, aiming to facilitate engagement in meaningful occupations, relevant daily roles, and social life, thereby enhancing well-being and quality of life [28].

Rehabilitation beyond individual perspectives

This study revealed that the common ground of Long COVID is its impairment of social functioning, resulting in difficulty maintaining achieved role sets. Thus, Long COVID as a health condition cannot be understood solely as an individual’s problem but as a phenomenon with various social dimensions, especially regarding rehabilitation and recovery [13,14]. As a response, it is essential to consider personal life, social and occupational context in the therapy process and to consider individual and socio-cultural beliefs and values in the rehabilitation process. For instance, the participants in this study report their clients feel pressure to regain their work ability and to reintegrate into the workforce quickly. However, since common reintegration procedures are not aligned with the unpredictability of Long COVID recovery, characterized as it is by unpredictable phases of improvement and recurring symptoms, the experiences of the participants point to the necessity of critically questioning familiar rehabilitation structures, such as gradual job reintegration.

Recommendations and implications for rehabilitation and further research

Based on their specific and differentiated expertise in analyzing and facilitating improvement in occupational performance, engagement, and participation, occupational therapists can support long haulers in developing Long COVID management strategies to engage in occupations they want or are expected to do. A key recommendation is to avoid premature labeling of Long COVID symptoms, instead advocating for comprehensive occupational therapy assessments. These assessments collaboratively establish occupation related goals, fostering self-determination and independence. Furthermore, acknowledging clients as key investigators and incorporating shared decision making by building on long haulers’ expertise may help enhance self-efficacy and autonomy in their recovery. Results of this study also suggest teletherapy as a pragmatic solution to reach clients with severe Long COVID symptoms to reduce the burden of accessing care.

Furthermore, the transformative potential of developing apps could provide clients with tools to apply learned strategies independently, fostering continuity beyond therapy sessions. In this way, the occupational context of the client’s life could be more directly incorporated into the therapeutic situation, simultaneously addressing the need to tailor energy management to the client’s life and activity situations. The results of our study point to the necessity of incorporating the experiences and expertise of those affected into the development of treatment options. Tailored support services can be created only in this way, by supporting clients to participate and engage in occupations relevant to them. Long COVID-affected individuals should be included in future research projects on interventions due to their unique experiences and perspectives. This ensures that the solutions developed are better tailored to their needs, allowing for diverse disease trajectories considerations and promoting client-centred, ethically sound approaches.

Limitations

This study comes with limitations that should be considered when interpreting our results. Due to the small sample size and cultural uniformity, the results may not speak to the variety of occupational therapy practice approaches and settings or occupational therapists’ experiences in other cultural contexts. Moreover, the interventions studied here were applied in early Long COVID care (2021/2022) and in the meantime may have been altered or discarded. Nevertheless, evidence-based therapeutic approaches for the treatment of Long COVID are still sparse. While strength of this study is the specific view on Long COVID management from an occupational therapy perspective, the perspectives of clients and their perception of the treatment process remain unknown and should be the subject of further investigations.

Conclusion

The findings of this qualitative study, conducted among seven occupational therapists working in Germany, Switzerland, and Austria, underscore the complex challenges involved in aiding long haulers to enhance their engagement and participation in meaningful daily occupations within inpatient and outpatient occupational therapy settings. Notably, our results indicate that treatment approaches centred around occupation, focusing on the client’s life situations, and contextual factors may prove beneficial when integrated directly into therapeutic interventions. This study contributes to gaining deeper insights into occupational therapists’ strategies in Long COVID management. The profession and other health care providers may benefit from these insights to develop support options for those affected.

Author contributions

CM prepared the first draft and conducted recruitment and interviews. CM, TS and IES participated in the analysis of the data. SH translated participants’ quotes into English. All authors revised the manuscript, provided further contributions and suggestions, and read and approved the final manuscript.

Acknowledgements

We gratefully thank all participants for sharing their experiences in the interviews.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

All data supporting this study’s findings are available on reasonable request sent to the first author.

Additional information

Funding

This study was funded by the German Ministry of Education and Research [FKZ 01EP2103A]. The funder had no influence on the design of this study.