This study explored the experience of stigma and access to healthcare by persons with long COVID from the majority Dutch and two ethnic minority populations (Turkish and Moroccan) living in the Netherlands.

This was a cross-sectional qualitative study that employed inductive and deductive thematic approaches to data analysis using MAXQDA.

Between October 2022 and January 2023, 23 semi-structured interviews were conducted with participants of Dutch, Moroccan and Turkish ethnic origins with long COVID living in the Netherlands. Participants were men and women aged 30 years and above.

Guided by the concepts of stigma and candidacy, the findings are structured according to the broader themes of stigma and access to care. The findings show that people with long COVID suffer self and public stigma resulting from the debilitating illness and symptoms. Especially among Turkish and Moroccan ethnic minority participants, strong filial obligations and gendered expectations of responsibility and support within their communities further worsen self-stigma. This experience of stigma persisted within healthcare where lack of information and appropriate care pathways led to feelings of frustration and abandonment, especially for participants with pre-existing health conditions which further complicate candidacy. Under the access to healthcare theme, the findings show multiple challenges in accessing healthcare for long COVID due to several multifaceted factors related to the various stages of candidacy which impacted access to care. Particularly for Turkish and Moroccan ethnic minority participants, additional challenges resulting from limited access to information, pre-existing structural challenges and experience of stereotyping based on ethnicity or assumed migrant identity by health professionals further complicate access to health information and long COVID care.

The findings call for urgent attention and research to identify and coordinate healthcare for long COVID. There is also a need for accessible, informative and tailored support systems to facilitate patients’ access to information and care pathways for long COVID. Providing tailored information and support, addressing the various barriers that hinder optimal operating conditions in healthcare and leveraging on social networks is crucial for addressing stigma and facilitating candidacy for persons with long COVID towards improving access to care.

Data are available upon reasonable request. The datasets generated and/or analysed during the current study are not publicly available due confidentiality concerns related to identifying information in the transcripts but can be accessed in a de-identified form from the last authors on reasonable request.

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The COVID-19 pandemic had multiple impacts on people’s health, particularly for persons experiencing long-term post COVID-19 complications.1 2 Literature on COVID-19 and its impact is growing,3–6 but qualitative literature on post COVID complications such as long COVID is limited. Long COVID can affect anyone and at any age regardless of health status.7 Evidence also shows that ethnic minority populations have higher rates of SARS-CoV-2 infection and subsequent hospitalisations in Europe and the USA with a higher risk of long-term health consequences following COVID-19 hospitalisations compared with the majority population.8–14 Recent studies conducted in Canada and the USA further show that non-hospitalised persons who tested positive for SARS-CoV-2 infection were significantly less likely to self-report long COVID symptoms compared with previously hospitalised persons.15 16 Non-hospitalised populations, especially from ethnic minority populations, generally have less access to care and rehabilitation programmes with limited literature on the role of ethnicity as a risk factor for long COVID and how it shapes access to care. Addressing the healthcare needs of people with long COVID therefore calls for a comprehensive understanding of the lived experiences of people with long COVID, especially among ethnic minority populations, to inform tailored interventions to address their healthcare needs.

Long COVID is a term commonly used to describe symptoms of COVID-19 that persist beyond the acute illness.17 The WHO reports that it occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, who continue to experience symptoms 3 months after the onset of COVID-19 with symptoms lasting a minimal duration of at least 2 months, which cannot be explained by an alternative diagnosis.18 Although symptoms greatly differ between individuals, with over 200 reported symptoms with wide prevalence; common symptoms include weakness, general malaise, post-exertional malaise, fatigue and concentration impairment.19–21 Symptoms may be new onset following the initial recovery from the acute phase of COVID-19 or persist from the initial illness, fluctuate or relapse over time and generally impact a person’s everyday functioning and reduce their quality of life.18 20

Previous studies show that 13.7% of non-hospitalised people continued to report complaints 3 months after testing positive for SARS-CoV-2, and 33–87% of patients who had been hospitalised reported persistent complaints in the UK.22–25 For ethnic minority populations living in high-income countries, a study shows that COVID-19 hospitalised patients with ethnic minority backgrounds are more likely than those of Dutch origin to report having long COVID; with significant differences in occurrence, nature of symptoms and duration of long COVID by migration background.8 Another study reported an increased risk of long COVID among ethnic minority populations compared with native Danes in a nationwide register-based cohort study with both hospitalised and non-hospitalised individuals.26 They called for further research to understand long COVID drivers and address care strategies among ethnic minority populations.

Several attributes of long COVID, such as its extended duration, the lack of a valid and uniform diagnostic test and effective treatment, render it a stigma-prone condition.27–30 Research on lived experiences in Italy shows that long COVID is stigmatised,31 with a UK study reporting that 75% of participants with suspected or confirmed long COVID reported often experiencing stigma.32 This experience of stigma can lead to poor health-seeking behaviour, which may exacerbate illness particularly for minority ethnic groups, due to aspects related to their identity such as race or ethnicity which can lead to the experience of ‘double stigma’.27 31–33 Stigma is a discrediting quality, which diminishes the status of an individual34 and occurs in social interactions. It is, therefore, entirely socially constructed with multiple manifestations such as public stigma, self-stigma and structural/institutional stigma (Section A, Table 1).34–36 The fear of stigma is worsened by implicit biases within healthcare and social systems, which place minority ethnic groups at a disadvantage in accessing and receiving quality care.37

Moreover, access to care influences an individual’s ability to effectively use health services or informal care, which encompasses both supply and demand factors.38 It is influenced by the concept of candidacy, which is a dynamic seven-staged process (Section B. table 1) by which people determine their eligibility for health services, through continuous negotiations with healthcare professionals.39–41 The candidacy model is particularly useful for exploring and understanding how vulnerabilities arise in relation to healthcare access and how these are influenced at multiple levels and differ between groups and across multiple intersections.40 41 The situation may be compounded for persons less familiar with health services, especially among ethnic minority populations where health literacy is generally lower.39

This study, therefore, draws on the concepts of stigma and candidacy33 38 to explore people’s lived experiences of long COVID, focusing on the experiences of stigma and access to care of ethnic minority populations in comparison with the majority (Dutch) population in the Netherlands.

A qualitative approach was used to conduct semi-structured interviews using questions and prompts originating from the theoretical framework on stigma and candidacy41 42and patients self drawn timelines to guide participants in narrating their illness and patient journeys. As a phenomenological study, this enabled participants to share their illness experiences and touch on sensitive illness experiences while allowing the researcher to explore known and unexpected outcomes.43–46

The results are presented under the two main themes arising from the conceptual framework with sub-themes and emerging codes. Table 3 shows that the majority of study participants were female (n=16/23), several participants were aged between 50–59 years (n=10) and with higher education (HBO/WO) (n=9). For ethnic minority participants, the majority were first-generation migrants (n=12 out of 16). Selected quotes are embedded in the results, and additional participant supporting quotes labelled Tu (Turkish), Mo (Moroccan) and Du (Dutch) are also presented as online supplemental file 2.

This study draws on the concepts of stigma and candidacy (30, 32) to provide insights into the lived experiences of people with long COVID with a focus on stigma and access to care from the experiences of two ethnic minority populations (Turkish and Moroccan) and the majority (Dutch) population in the Netherlands. The study findings show that participants suffer self and public stigma resulting from the prolonged experience of debilitating symptoms and the lack of information and appropriate care pathways within the context of healthcare, which led to feelings of frustration and abandonment. In addition, all participants experienced general difficulties in accessing healthcare for long COVID resulting from several multifaceted factors related to candidacy. The lack of information, appropriate care pathways and care coordination from health professionals as key operating conditions for healthcare adversely impacted participants’ health encounters, resulting in participants' acceptance of long COVID symptoms and refraining from seeking or accepting follow-up care services. However, social networks were strong sources of information which enabled participants to build collective and individual candidacy. For some ethnic minority participants, candidacy was further complicated by limited Dutch language proficiency, digital and/or health literacy and experience of stereotyping based on ethnicity or assumed migrant identity by health professionals.

The findings show that the varied symptoms of long COVID and the challenges managing these symptoms made participants feel misunderstood and afraid of being perceived as pretending. Although they did initially attract public empathy, this atrophied over time, contributing to the experience of self and public stigma when symptoms persisted or reoccurred. These challenges lead to feelings of isolation and depression, which facilitated internalised stigma. This was more evident among ethnic minority participants where collective and gendered norms surrounding family responsibility led to feelings of shame, guilt and a loss of identity as illness challenges made it difficult to engage in social and/or economic obligations, leading to identity disruptions. Similar findings have been reported in other studies where the perceived inability of people affected by long COVID to effectively manage their symptoms or reduce the severity of their symptoms resulted in all forms of stigma and identity dilemmas.27 31 32 55 56

Within the candidacy framework, the process of determining eligibility for health services is for individuals to decide if their symptoms require medical attention, followed by navigation to care, which requires the knowledge and ability to enter appropriate services.30 Given the strong relationship between health-seeking behaviour and confidence in self-diagnosis,40 individuals’ identification of candidacy for long COVID may be impaired due to the lack of a clear illness trajectory and definition of the condition.57 When participants identified that their complaints required medical attention, they first contacted their GPs or, in some instances, the company/work healthcare professionals (identification). Subsequently, the lack of a proven treatment method30 and well-defined care pathways28 29 57 halted the process of establishing candidacy for care (navigation). The ease of entry into the health system was further complicated by alternating GPs and limited time for consultations (a general practice of the Dutch healthcare system), which hinder familiarity and effective patient–provider relationship to address the varied and multiple symptoms (permeability). In addition, symptoms such as ‘brain fog’, a common symptom of long COVID and characterised by difficulties with executive function, memory, and communication,57 impinged on individuals’ ability to accurately portray their symptoms and illness experience during encounters with health professionals, thereby reducing their ability to assert candidacy (appearances) and have this validated (adjudications). This has crucial implications for long COVID care access and acceptance of follow-up services or referrals to appropriate care (offers and resistance). Especially for Turkish and Moroccan ethnic minority participants who could not communicate in Dutch, ‘brain fog’ and the novelty of their symptoms exacerbated difficulties to clearly describe their symptoms, request for or get referred to care pathways, requiring them to depend on family members and children to advocate for their care. The use of family members and children to facilitate access to care has implications for patient privacy, and their understanding and translating of medical concepts and information which could potentially lead to miscommunication and/or misinformation. Perhaps, this challenge is more evident because the majority of Turkish and Moroccan ethnic minority study participants were first-generation migrants who might have had low Dutch language proficiency and digital literacy. The challenge to effective communication, particularly regarding limited or no national language proficiency, and the dependency on children to serve as translators in facilitating patients’ access to healthcare have been reported in several studies.58–65 This is potentially worse when people are less familiar with health services or have lower health literacy rates, such as among some ethnic minority populations.39 This dynamic process by which participants determined their eligibility for healthcare services, through continuous negotiations with their healthcare providers, highlights how vulnerabilities in accessing healthcare arise are influenced at multiple stages and differ between populations. This emphasises the crucial need for accessible, informative and tailored support systems to enhance access to information and care pathways for persons with long COVID and inform the public about current iterative evidence on long COVID and care.

Within the conceptual framework, upon entry, access is affected by the process of asserting candidacy during interactions with health professionals (appearances) and professional’s judgement about candidacy, influencing subsequent treatment (adjudications).39 While there were few reported overt experiences of double stigma and/or differential treatment based on ethnic minority background in this study, a general awareness of their minority position caused some Turkish and Moroccan ethnic minority participants to voice suspicions of differential treatment when they were not met with appropriate care. Layered on is the experience of stereotyping based on ethnicity or assumed migrant identity by health professionals, which further facilitated participants’ perception of differential treatment that impacted participants’ assertion of candidacy during their interactions with health professionals. Validations of candidacy by healthcare professionals are partially influenced by socially constructed notions about which patients are most likely to respond well and thus ‘deserve’ treatment as ‘ideal candidates’.38 41 These tie into the concept of stigma, as stigmatised individuals are less likely to be perceived as the ‘ideal candidate’ due to public stigma surrounding their identity. Thus, healthcare professionals need to recognise and address biases and inequities, especially towards ethnic minority populations who may face implicit healthcare and other social biases in accessing and receiving care.37 39 66 Such implicit biases could legitimise or adversely facilitate public stigma, especially for long COVID participants from ethnic minority populations, with further impacts on patients’ candidacy.66–68 In addition, while the findings show general difficulties in accessing care due to the lack of well-defined care pathways for long COVID, some Turkish and Moroccan ethnic minority participants faced additional difficulties such as limited access to information and resourceful and supportive networks, which compound existing health inequities.59

Personal relations and acquaintance with healthcare professionals with knowledge of long COVID were found to be key sources of information, access and referral to appropriate care sources outside of formal care pathways for long COVID participants. While the influence of social networks on peoples’ access to health information and navigation to care is more commonly reported among ethnic minority populations,59 in this study, both ethnic minority and the majority population used their social networks to facilitate candidacy and navigate access to care for their long COVID symptoms. Studies highlight the role of social networks and connections on health and social identity, which potentially influence people’ beliefs and health-seeking behaviour27 42 and shape candidacy. While the complexity and limited evidence on long COVID resulted in both healthcare professionals and participants being poorly informed on long COVID, other resourceful and informal networks provided an avenue to access information and care pathways for long COVID symptoms. This placed an immense burden on participants, particularly in the face of their long COVID illness, and potentially led them to access inappropriate information and care strategies to manage their symptoms, with critical impacts on their current and future health conditions.

For digitally literate participants, like findings from other studies,17 69 70 social networks, particularly online technologies and media, allowed long COVID patients to share and discuss symptoms, search for diagnosis and attempt to resolve identity dilemmas, which built a ‘collective candidacy’ that facilitated their individual candidacy. For less digitally literate participants such as older or first-generation migrants, there is a need to harness localised and existing initiatives such as through the ‘buurthuizen’ (neighbourhood houses), which are accessible community centres fostering social interaction, engagement and connections for residents including vulnerable persons. The importance of social connections and networks was more evident as non-Dutch speaking and more socially isolated participants experienced greater difficulties in navigating care within the Dutch health system. Consequently, social networks facilitated access to information sources such as C-support, which provided support and advice for long COVID. C-support was helpful in equipping participants with long COVID-related information such as specific referral requests to make from their GPs, which enabled them to better advocate for appropriate care and support for their illness. This emphasises the role strong social or professional networks can play on participants’ ability to assert candidacy in encounters with healthcare professionals in navigating access to care.

Furthermore, operating conditions surrounding the organisation and delivery of GP practices in the Netherlands, limited GP consultation time, bureaucracy of the health system, alternating GPs and participants’ perceptions of being misunderstood and the inadequate capacity of health professionals on long COVID influenced permeability and local production of candidacy. Consequently, Turkish and Moroccan ethnic minority persons contemplated seeking healthcare in their home countries where evidence shows they are known to often assess healthcare for specialist care and diagnostic assessments due to challenges in the operational conditions of the Dutch healthcare system, which court dissatisfaction with Dutch primary care.71–74 In the Dutch healthcare system, GPs are the gatekeepers to healthcare,54 functioning as key entry points, which requires time, trust and building strong relationships with participants to ease entry into the healthcare system. Several studies have also highlighted the importance of time, trust and building relationships between patients and GP services within the context of complex interventions to improve healthcare access.75 76 Participants felt that most GPs were uninformed about their illness, with some healthcare professionals assuming a psychological origin/cause for participants’ symptoms and thus contributing to their insecurities and self-stigma, particularly for patients with pre-existing health problems. Even with a diagnosis, access to referral and appropriate care was limited due to the novel nature (at the time) of long COVID and the subsequent paucity of literature and evidence on effective care and treatment pathways for long COVID. This greatly affected operating conditions for health professionals in establishing treatment and care plans for participants. Several studies have established the lack of well-defined care pathways or proven treatment methods that can be prescribed to all patients,28–30 which emphasises the need for clear operating conditions such as clinical and policy directions for novel and emergent conditions like long COVID. These would profoundly impact health professionals’ capacities through the availability of care pathways (permeability), their professional judgement about an individual’s candidacy, which influences subsequent treatments (adjudications) and patient and healthcare professional interactions and developments over time (local production of candidacy). While there is a need for health policy direction to enhance current operating conditions for treatment and care for long COVID, health professionals need to be equipped with evidence-based long COVID-related information as it emerges to facilitate local production of candidacy towards improving access to appropriate care and support for persons with long COVID. GPs could also facilitate social support for long COVID patients through sensitisation programmes to mitigate potential related stigma within the healthcare system and public if they are well informed. A recent qualitative study in the UK reported that ethnic minorities with long COVID experienced negative healthcare encounters at primary healthcare, which complicated access to secondary or specialist care with further access challenges and dissatisfaction with specialist care for long COVID.66 Particularly for ethnic and minority study participants, these challenges are further complicated by Dutch insurance costs and comparisons of the Dutch health system with other less bureaucratic health systems in other countries or their home countries. These potentially impact on patient and health professional interactions and participants’ acceptance or rejection of the follow-up services suggested for them by their GPs that require them to incur additional costs for the referral service or wait a longer period to access referral health services despite having health insurance (offers and resistance). Added on, as similarly reported in other studies, are pre-existing barriers to accessing healthcare services such as language difficulties, low literacy and digital literacy barriers, which further compound access to care.77–80 Training healthcare professionals such as nurse practitioners as case support managers for long COVID and building relationships with patients to provide practical support to navigate and access appropriate care could potentially reduce these structural barriers. There is also a need to sensitise the public on the feasibility of requesting longer consultation times for long COVID symptoms at GP services.

Moreover, the findings highlight the need to leverage social connections and networks to prevent and address stigma surrounding long COVID towards improving healthcare access to information and care through community sensitisation to facilitate patients’ candidacy in accessing care. Like findings of other studies,81 82 centrally structured multidisciplinary medical care could provide support in navigation and coordination of care to improve clinical outcomes for long COVID. While organisations such as C-support help patients navigate to care, providing a central care point of contact for long COVID linked to the GP system could reduce inequities in access to long COVID information and care. In addition, although C-support provided information and directions to care, the findings show that most non-Dutch-speaking participants recruited outside of C-support were not familiar with C-support. This shows the critical role that communication, particularly in the host country’s language and digital literacy, plays on access to health information. Patient organisations (both formal and informal) could be leveraged to reach and support sub-population groups by offering language and culturally concordant long COVID information and support, which may incrementally improve access to information and care among ethnic minority groups. In addition to growing calls for establishing nationwide registers of people with long COVID,47 collecting data on the lived experiences of various sub-populations could inform health policy and tailored implementation to improve access to long COVID care, especially for ethnic minority populations.

The study findings show self and public stigma resulting from the debilitating illness and symptoms that persons with long COVID face, highlighting the need for public sensitisation. They also show that people with long COVID experience difficulties in accessing reliable information and healthcare resulting from several multifaceted factors related to candidacy. Social and pre-existing challenges and inequities such as communication (including digital) barriers and stereotyping by health professionals further compound ethnic minorities with long COVID's candidacy and experience of stigma. Leveraging social and community networks could potentially reach the diverse subpopulations with relevant long COVID-related information and care pathways in an iterative manner that improves access to information and care for long COVID.

Data are available upon reasonable request. The datasets generated and/or analysed during the current study are not publicly available due confidentiality concerns related to identifying information in the transcripts but can be accessed in a de-identified form from the last authors on reasonable request.

The authors thank the study participants for their participation in this research study. We are also grateful to the research assistants, Farida Almane and Nazli Lale-Kahraman and Nikita Hensen (NH), a junior researcher who assisted MT in coding the transcripts. We are also grateful to C-support for providing advice and recruitment support.