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Disabled people’s experiences accessing healthcare services during the COVID-19 pandemic: a scoping review

Abstract

Background

Disruptions to healthcare services during the COVID-19 pandemic are well-recognised problems. However, a dearth of research exists on disabled people’s experiences with accessing these services. A scoping review was undertaken to identify and explore research on the experience of disabled people in accessing healthcare services between 2020 and 6 February 2023.

Methods

PubMed, Web of Science, CINAHL, and OVID were employed to search for research that included the voice of disabled people, or their parents or caregivers. Over two distinct phases, a total of 2,201 articles were reviewed according to article titles, keywords, and abstracts. Eighty-one studies were identified that met the inclusion criteria; these were reviewed in full.

Results

Eighteen studies specifically described the experiences of accessing healthcare or disability services, and sixty-three raised healthcare challenges as a secondary consideration. Many disabled people struggled to access healthcare services and felt they were invisible; as a result, individuals’ mental health was negatively affected. Disabled people with compounding vulnerabilities were at the most risk of experiencing a lack of healthcare access.

Conclusions

There is an urgent need for research and policy that is responsive to disabled people’s access to healthcare during the pandemic; currently many health policies are ‘disability-blind’ and exclude these members of the global community. Furthermore, to assist in creating disability-responsive research, funding needs to prioritise researchers within the disabled community.

Peer Review reports

Background

Disabled people constitute approximately 15% of the world’s population [1, 2]; the World Health Organization [2] estimates that the number of disabled people is growing rapidly, in part because of population ageing and the impacts of long-COVID [3]. Disabled people access healthcare services at approximately double the rate of those who are not disabled [4, 5], and are more likely to have concurrent chronic health illnesses [2, 6,7,8]. In addition, when disabled people access healthcare, they likely encounter discrimination and other barriers, including obstacles, attitudes and actions that impact the quality of health services [2, 5, 9, 10]. Furthermore, disruptions to these services disproportionately impact this population through treatment delays and associated mental distress [11,12,13,14,15,16] and poorer health outcomes over time [2, 12, 13, 17,18,19]. Despite comprising a significant proportion of the population, disabled people are especially vulnerable to precarious healthcare access resulting from ableist structures.

While barriers to disabled people’s healthcare access have been long appreciated, the COVID-19 pandemic created unprecedented global health system challenges [16, 20,21,22]. Such challenges include significant disruption to healthcare delivery and provision of timely services [2, 14, 16, 20,21,22,23,24,25,26,27,28,29,30,31,32,33,34]. For example, access to rehabilitation and occupational therapy support services was significantly impacted [24, 25]. Disabled people also had reduced or no access to health and disability services, likely negatively impacting this population’s long-term health [24, 31, 35, 36].

A growing body of evidence emphasises the importance of knowing disabled people’s lived realities [30, 37,38,39]. This can be especially appreciated given disabled people’s experiences are often ignored because of the privileged position of ableism [13, 40]. Significantly, disabled people’s continued marginalisation has been perpetuated through the imposition of ableist service designs and lack of external responsiveness to disabled people’s lived realities, needs and direction [2, 37]. Further, aligned with ableist privileging, Brennan [37] cautions that the epistemological positioning of those who conduct research on disabled people, and the development of disability-related policy, needs to be critically evaluated. Such caution is founded on a wariness that research on marginalised populations, without their endorsement, involvement or critical appraisal can result in the marginalised population’s continued misrepresentation and, as such, failure to address healthcare access needs.

Health systems geared to cater to disabled people are better designed and deliver services more effectively when people with lived experiences provide input [2, 30, 37, 41]. This is because unique insights from those accessing healthcare enable service delivery to be specifically tailored to meet people’s needs, take into account their unique strengths, and identify areas where additional supports are required [41, 42]. The COVID-19 pandemic exacerbated challenges in accessing healthcare for disabled people [13, 32, 37, 43]. Within this context, there is a need to understand the implications of this loss of access on disabled communities. The present scoping review explores what COVID-19 pandemic research includes disabled people, or primary caregivers’, voices about the experience of accessing healthcare during 2020–2023.

Methods

Our review reflected Arksey and O’Malley’s methodology for scoping reviews and the PRISMA extension for scoping reviews [44,45,46]. We applied strict criteria (Table 1) to our search of PubMed, Web of Science, CINAHL, and OVID (including MEDLINE). The search occurred in two distinct phases: phase one occurred on the week of 18 April 2022, and phase two, the week of 6 February 2023. Phase one included articles published after 1 January 2020 and focussed on disabled people accessing healthcare during the COVID-19 pandemic. Phase two aligned with phase one and included articles published between the initial search to 6 February 2023. Search terms (and relevant variations, see Table 2) included “COVID-19”, “health*”, “access” “disabled people” and “disability”. The search strategy, in keeping with Arksey and O’Malley’s methodology [45], was purposely broad, and an in-depth analysis of articles was conducted to ensure that the research team captured a greater breadth of findings.

Table 1 Inclusion and exclusion criteria
Table 2 Search term variations and filters

All articles were screened against the inclusion/ exclusion criteria using the article title, keywords and abstract; if there were concerns about suitability for inclusion full texts were also reviewed, in keeping with the methodological approach. In phase one, GG, KMH, SNO, and TNO screened all articles. The team used Rayyan (Rayyan Systems Inc, 2023) to support the review including when identifying duplicates and reviewing conflicts in screened articles. Any phase one conflicts that were unable to be resolved were reviewed by MR. In phase two, all articles were screened by KMH and TNO, who then discussed conflicts, MR was available to review any conflicts that were unable to be resolved. For an article to be included in the review it needed to have addressed healthcare access, which often required a thorough analysis of the entire paper; this review of papers occurred during the conflict resolution phase. All included full-text articles in both study phases were then reviewed by TNO and KMH using the PRISMA Statement 2020 checklist as an evaluation tool [44].

Data extraction and analysis

Data were extracted by TNO and KMH into a Microsoft Excel (Microsoft Corporation, 2023) spreadsheet after the research team agreed on a refined evaluation criterion; these were as follows: study title, authors, research and study design, study focus, objectives, participant description and outcomes. A further sub-analysis explored primary author characteristics; this sub-analysis included fields such as apparent gender, funding source, the researchers’ discipline, explicit disability community connections, and if research team members were part of the disabled community (Table 3). Some of this analysis was challenged by reporting differences.

Table 3 Author characteristics and project funding status

KMH and TNO examined the final extracted studies from both research phases and analysed these thematically following scoping review aims. These themes were then systematically explored and shared with the wider research team for verification and refinement.

Results

Overview

In phase one, 1,158 articles were identified across the various databases: 276 from CINAHL; 257 from OVID; 287 from PubMed; and 338 from Web of Science. Four hundred and ninety-four duplicates were identified and removed, leaving 664 articles for review; 215 were published in 2020, 355 in 2021, and 94 in 2022. Following reviewing all articles, 572 were excluded based on assessment against inclusion and exclusion criteria and 92 were screened (Fig. 1). Following screening, 14 articles were in scope (Table 4).

Fig. 1
figure 1

Phase one scoping review literature selection

Table 4 Characteristics of reviewed studies

In phase two, 2016 articles were identified across the various databases: 382 from CINAHL; 42 from OVID; 622 from PubMed; and 970 from Web of Science. Total unique articles once duplicates were removed was 1537; 1431 were published in 2022, and 106 in 2023. Following review of all articles, 1335 were excluded based on assessment against inclusion and exclusion criteria and 20 were screened (Fig. 2). Following screening, 67 articles were in scope (Table 4).

Fig. 2
figure 2

Phase two scoping review literature selection

High-level findings

Amongst the included studies, 59 indicated that the authors employed solely qualitative design [8, 13, 38, 41, 47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100,101], and another 22 employed either survey or mixed-method approaches [12, 17, 102,103,104,105,106,107,108,109,110,111,112,113,114,115,116,117,118,119,120,121].

Of the 14 studies included in review phase one, none focused solely on healthcare or healthcare access for disabled people during the pandemic. For instance, 14 addressed disabled people’s pandemic experiences [8, 12, 13, 17, 88,89,90,91, 93,94,95, 116, 117, 122], with healthcare access emerging as a sub-topic participants raised. In phase two, 17 authors explored healthcare access [48, 50, 51, 57, 58, 60, 65, 67, 69, 73, 78, 83, 96, 97, 103, 108, 120], and healthcare access arose as a subtopic raised by participants in 50 studies [38, 41, 47, 49, 52,53,54,55,56, 59, 61,62,63,64, 66, 68, 70,71,72, 74,75,76,77, 79,80,81,82, 84,85,86,87, 98,99,100,101,102, 104,105,106,107, 109,110,111,112,113,114,115, 118, 119, 121].

In phase one, six studies included only those who were disabled in the participant group and 111 from this list of references. Thank you.[8, 13, 90, 92, 95, 96, 111]. Two included parents of disabled children and discussed their experiences of accessing disability rehabilitation services [91, 112]. Five included various participant groups, including those with chronic illness and those who are disabled [17, 89, 93, 94, 111]. No demographic information was available on the final study’s [89] participants because participants were recruited through social media. Phase two paints a different picture with a growing focus on disabled populations, 44 authors focussed solely on disabled participants [38, 41, 47, 48, 50, 51, 53,54,55, 57,58,59,60,61, 64, 66,67,68,69, 72,73,74,75,76, 78,79,80,81,82,83,84,85,86, 98, 99, 104, 106, 108,109,110, 114, 115, 117, 120], of these 34 included the voices of parents/ caregivers as well as, or in place of a disabled person [38, 49, 52, 53, 55, 56, 58, 62, 63, 65, 66, 70,71,72, 76, 77, 79, 87, 88, 97, 100,101,102,103, 105,106,107,108, 116, 118,119,120,121,122].

Themes

Four themes emerged from both scoping review phases: Disrupted healthcare and disability services, Mental distress and health services, Healthcare access as a biproduct, and Faceless minorities. These are explored in the following sections.

Disrupted healthcare and disability services

The most significant outcome from this scoping review was the magnitude of disruption to healthcare and disability services for disabled people. The pandemic exacerbated pre-existing challenges of accessing healthcare [5, 12, 17, 41, 51,52,53,54, 58, 59, 65,66,67,68, 70,71,72, 75,76,77,78,79, 81,82,83,84,85, 87, 88, 91, 95, 101, 102, 104, 109, 111, 114, 115, 121], including through attitudes and actions that negatively impacted the quality of health services disabled people received. Precarious financial positions further complicated disabled people’s healthcare access including to necessary medicines [38, 41, 48, 54, 58, 60, 63, 64, 67, 68, 71, 72, 74, 77, 81, 83,84,85, 101, 104, 109, 111, 114, 115]. Regardless of physical, sensory, or intellectual disabilities, authors highlighted problematic issues in accessing routine healthcare, COVID-19 testing and vaccination; issues included such things as not being able to afford masks, inaccessible venues, peoples’ use of masks creating communication barriers, or a lack of transport [12, 13, 54, 58, 59, 65, 69, 71, 72, 77,78,79,80,81,82,83, 85, 91, 95, 101, 109, 114,115,116, 121].

In some studies, access to healthcare was via telehealth, which was helpful for those with access to this mode of support [12, 17, 23, 53, 55, 84, 90, 91, 95, 114], but further compounded a lack of access for others [54, 57, 59, 65, 78, 84, 87, 88, 93, 95, 101, 111]. For example, access to telehealth was challenging for those who were Deaf, had dementia or an intellectual disability, or could not access or use the internet [12, 13, 51, 57, 59, 78, 84, 87, 91, 95, 101, 111, 112, 116]. Selick and colleagues endorsed individualised approaches when delivering telehealth for people with intellectual or developmental disabilities, as this enhanced the therapeutic value [57]. In addition, some authors indicated there was reduced efficacy for using telehealth for services such as physical therapy [12, 51, 54, 56, 70, 87, 91, 101, 104, 105, 108, 110, 112, 117, 121].

Public health communication tailored for people in the disability community was often missing or not provided in fully accessible formats [38, 41, 52, 58, 59, 67, 73, 74, 78, 83, 85, 98, 101, 114, 115]. Studies highlighted the value of social media or established community networks to develop messaging for the disability community and support information sharing [66, 68, 70, 71, 89, 98]; Dia and Hu’s research demonstrated that using the community to drive accessibility of messaging resulted in agency within the community and effective communication [89]. Other researchers also noted the value of initiatives such as this to offset the significant hardship caused by a lack of disability and healthcare service access during the pandemic [17, 54, 68, 88, 93, 114].

However, for participants in most studies, limited key information about how to access healthcare exacerbated challenges they faced, because people were unsure whether they were able to, or should, access healthcare [12, 13, 41, 52, 58, 59, 65,66,67,68,69, 71,72,73, 79, 81, 83, 88, 89, 95, 101, 104, 114,115,116, 121]. Compounding issues, participants in some studies noted that health services in their countries were not offered as COVID-19 led to a reallocation of health practitioners to other services [58, 71, 72, 81, 101]. Additionally, when accessing healthcare, communication was further hampered by healthcare practitioners wearing masks as people with vision, intellectual and hearing impairments struggled to understand verbal instructions and directions, as noted by many authors [12, 13, 41, 52, 59, 65,66,67, 73, 78, 83, 85, 91, 95, 101, 115, 116]. Participants also highlighted that they did not understand the information health professionals provided but felt too insecure to ask for clarification on care instructions and medication administration [59, 95, 101].

Other authors raised issues about accessing healthcare without disability service support, which meant disabled people were unable to attend clinics in-person because of issues such as a lack of accessible venues, transport or sign language interpreters [12, 13, 54, 65, 68, 71, 72, 78, 82, 83, 85, 94, 104, 115, 117, 121]. Equally, practitioners lack of understanding about specific needs of people trying to access healthcare further intensified access challenges [59, 78, 84, 85, 101, 115]. For example, if doctors failed to recognise and understand specific safety needs then healthcare was inaccessible because of provider issues [59, 78, 84, 85, 101, 115]. Challenges accessing healthcare led disabled people to describe themselves as invisible or completely alone; this perception of invisibility extended across all facets of society with which they interacted [13, 41, 68, 71, 72, 79, 81, 82, 121].

Moreover, fear tempered individual willingness to access healthcare services [13, 41, 53, 58, 65, 67, 68, 71, 72, 76, 79,80,81, 85, 87, 88, 90, 91, 101, 104, 114, 115, 121]. These fears stemmed from concerns about catching COVID-19 and the rationing of healthcare services, which led some to not access timely healthcare [13, 53, 54, 66, 71, 72, 76,77,78, 80, 82, 85, 87, 88, 90, 91, 104, 109, 111, 114, 115, 117], resulting in self-reported poorer health outcomes [13, 54, 58, 65, 67, 68, 71, 72, 78, 82, 85, 87, 91, 104, 109, 111, 114, 117, 121]. In turn, people with limited access to support to attend healthcare appointments and consequent compromised healthcare access also had significant safety concerns about surviving serious illnesses [13, 48, 58, 67, 71, 72, 77,78,79, 85, 104, 109].

Some disabled people encountered a complete cessation of disability services [8, 13, 41, 54, 68, 70,71,72, 82, 91, 101, 105, 107, 109, 111, 113, 114]; for example, home-based carer support, transport to therapy or healthcare settings. Some studies highlighted that accessible environments, such as therapy pools and day schools, were closed [12, 52, 54, 75, 82, 87, 91, 102, 113, 117, 121]. For other disabled people, access to services was reduced [12, 13, 17, 41, 51, 53,54,55,56, 64, 65, 68,69,70,71, 75, 79, 82, 83, 85,86,87,88, 90, 91, 102, 104,105,106,107,108,109,110,111,112,113,114,115, 117, 121]. This access change contributed to concerns from disabled people and their parents or caregivers around how the disabled person would maintain their health [8, 12, 13, 17, 41, 51, 52, 55, 56, 64, 70,71,72, 75, 76, 78, 82, 83, 85,86,87, 101, 102, 105,106,107,108, 110, 114, 115, 117]. Other work highlighted that families also restricted the movements of disabled people because of health concerns, including concerns around the disabled person contracting COVID-19 [8, 13, 76, 86, 90, 101, 117].

Mental distress and health services

Research participants used words such as “fearful”, “shocking”, “anxiety producing”, “overwhelming”, “imprisoned” and “isolating” to describe their pandemic experiences [8, 12, 13, 17, 41, 52,53,54,55, 58, 59, 64,65,66,67,68,69,70,71,72, 74, 75, 77,78,79,80,81,82, 84, 85, 87, 88, 90, 101, 104, 105, 109,110,111, 114, 116, 117, 121, 122]. These comments stemmed directly from the lack of disability services, which disabled people relied on for the basics of daily life, such as food and medications. As a result, mental health and associated services were discussed widely [8, 12, 17, 53, 55, 58, 64, 65, 68, 70, 75, 85, 88, 91, 92, 104, 106, 110, 114]. The impact of a loss of services led disabled people and their family-carers to experience diminished wellbeing because of a loss of routines and social isolation [8, 12, 13, 41, 52,53,54,55, 58, 59, 64,65,66,67, 70,71,72,73, 75,76,77,78,79,80,81,82, 84,85,86,87, 92, 93, 101, 102, 104,105,106,107, 109, 111, 113, 114, 117, 121, 122]. Notably, many of these experiences were directly attributable to a lack of access to disability services during the pandemic.

Researchers emphasised the need to consider the United Nation Convention on the Rights of Disabled People and address wider health determinants when planning healthcare services for disabled people during a pandemic [13, 41, 52, 54, 58, 64,65,66, 70,71,72, 74, 77,78,79, 81, 85, 93, 101, 107, 109, 114]. However, accessing mental health services emerged as highly problematic [8, 13, 17, 55, 75, 84, 85, 88, 93, 104]. Participants highlighted that they experienced despair and severe mental distress because of the pandemic [38, 41, 55, 58, 67, 68, 71, 72, 74, 75, 81, 82, 85, 93, 109, 111]. Significantly, a sense of despair and severe mental distress was reported by the most vulnerable disabled people as they had compounding, or intersecting, difficulties including age, identity, ethnicity and geography [13, 41, 54, 58, 64, 67, 68, 71,72,73,74, 77, 79, 81, 82, 84, 85, 88, 93, 101, 109, 114, 115]. Notably, several research participants accessed mental health and intellectual disability support virtually, which was beneficial for them [17, 53, 55, 84, 85, 90, 91, 110, 111, 114]; however, such approaches were not universally accessible, leaving some disabled people with no available options for accessing help and support [41, 71, 84, 85, 88, 93, 104, 106, 111, 114]. For those with Fragile-X Syndrome and autistic people, in-person mental health services were preferred because of relationship challenges that resulted from telehealth [55, 77, 112].

Healthcare access as a biproduct

As previously mentioned, half the reviewed studies did not specifically focus on healthcare access and, instead, authors canvassed broader areas such as pandemic experiences. Authors focused on health promotion [88], general pandemic communication [95], COVID-19 vaccinations [83], telehealth [57], impact on disability services [109], social media messaging [89] and the pandemic’s acute mental health impacts [75, 92, 93]. Studies also indicated that loss of disability services during the pandemic contributed to disabled people’s isolation, both physically and emotionally, and resulted in heightened mental distress [8, 12, 13, 38, 41, 48, 52,53,54,55, 58, 59, 63, 67,68,69,70,71,72, 75, 77, 79, 82, 91,92,93, 101, 102, 105, 106, 113,114,115, 122]. As part of this wider pandemic experience, authors revealed that disabled people developed coping skills and adapted as best they could to the challenging situations in which they found themselves to mitigate their mental distress [58, 79,80,81, 109, 115]. Healthcare access often arose as a research biproduct and a core issue that impacted them in either positive or negative ways as part of their pandemic experience. This highlights the wide effect limited healthcare access can have on everyday life.

Faceless minorities

Disabled populations who experienced compounding and intersecting vulnerabilities were reported to be at a significantly greater risk of experiencing inaccessible healthcare services and bore a greater burden because of the pandemic [38, 41, 48, 58, 71, 72, 77, 103, 114]. For example, the lack of disability services meant that some participants belonging to ethnic minorities or from low to middle-income countries went without their basic needs, this included a lack of access to food and regular medications [38, 48, 63, 77, 114]. Disabled people comprise a significant proportion of the world’s population [2], and the reviewed work originated from around the world. This review, therefore, underscores the unequal burden disabled people have experienced during the pandemic, particularly if residing in middle- to low-income countries [38, 41, 48, 58, 71,72,73, 77, 81, 101, 114]. Noting a lack of diversity in the inclusion of disabled people and minority populations, authors within the reviewed studies called for diversity of representation in pandemic research and disability-inclusive emergency planning [13, 17, 38, 41, 48, 58, 71,72,73, 77, 81, 101, 114].

Research context sub-analysis

An additional analysis was conducted to explore the community of researchers publishing on disabled peoples’ experiences during the pandemic (Table 3). This analysis focussed on identifying characteristics of the primary author, funding source, and explicit connections with the disability community to inform future research. Sub-analysis results revealed only 17 publications that included someone in the authorship group with clearly identified lived experience of disability or who acted as a family-member advocate [13, 17, 38, 55, 63, 65, 68, 78, 79, 83, 8991, 95, 105, 108, 101]. Seven phase one authors acknowledged receiving research funding [13, 88, 91, 92, 95, 116, 117], with one other research group indicating they had received partial funding for their study; in phase two, 41 authors indicated that they received funding [38, 47, 49,50,51,52, 55, 57,58,59,60,61, 64,65,66, 68,69,70,71,72,73,74,75, 78, 79, 82, 83, 85, 87, 97,98,99, 103, 104, 107, 109, 111, 112, 114, 118, 120].

Discussion

This scoping review, which identified 81 studies, conducted in two distinct phases, is the first to examine disabled people’s experiences of accessing healthcare services during the COVID-19 pandemic. There were 17 studies specifically focused on health service access that involved disabled people as either survey respondents or qualitative participants [48, 50, 51, 57, 58, 60, 65, 67, 69, 73, 78, 83, 96, 97, 103, 108, 120]. These focused on a diverse range of topics, from vaccination experiences [83] to access to safe water [73] during the pandemic. The present scoping review has the unique advantage of showing how pandemic research has grown to form a strong basis on which to advocate for lived-experience research, particularly given the dearth of research in phase one of this review. Continued research is needed to ensure that lived-experience research informs responsive and accessible healthcare service provision for disabled people, especially in emergencies.

When closely scrutinised, the volume of research initially identified by the two review phases (n = 3,174) did not include many studies solely focussing on the voices of disabled people. Studies employing a solely qualitative design (n = 59) revealed sobering experiences for disabled people in accessing health or disability services; the cessation of in-person disability services seriously impacted disabled people’s quality of life. Although a full exploration of disabled people’s experiences accessing disability services during the COVID-19 pandemic is beyond the scope of the current review, this area must be examined in more depth.

Tellingly, this scoping review revealed that disabled people’s healthcare access needs are not adequately met, especially for those with compounding vulnerabilities who are reliant on disability services. The pandemic has been highly problematic; for disabled people, routine healthcare services all but ceased and services that continued differed vastly from usual. The challenges experienced and lack of health professional response to disabled people’s needs, even when specifically raised, left disabled people feeling invisible [13, 41, 68, 71,72,73, 81, 82, 121]. Telehealth mitigated some issues but compounded problems for those with certain disabilities, and those without access to telecommunications devices or the internet. In addition, according to research participants, the loss of access to medication and services such as physical and occupational therapy impacted their current and future health status.

Healthcare planning

Health service planning during pandemics should include a focus on initiatives to improve the wellbeing of disabled people and their families, either in biological or friendship groups. Such wellbeing planning could help mitigate the emotional load associated with isolation. Most importantly, disabled people’s preferences around receiving mental health services during national emergencies, such as pandemics, should be the focus of further research to inform service planning.

The first-hand experiences of the disabled community must be sought so that healthcare and disability services can orient to, and reflect the needs of disabled people. Experts highlight an urgent need to respond to disabled people’s needs across all health system levels [2, 37], which is in keeping with the United Nations Convention on the Rights of Persons with Disabilities [123]. Hochman and colleagues described how policies are disability-blind, and, therefore, disabled people’s needs are not met when delivering healthcare [105]. Moreover, emergency healthcare responses need to be planned systematically and oriented according to community needs and with disability community input. Research by Xu and colleagues [95] highlights how disabled communities can be mobilised to reach those within their communities, meaning that disabled people are willing to support care initiatives. Additional research on the long-term ramifications of disrupted healthcare access for disabled people is pertinent to inform healthcare management going forward.

Another way of addressing the needs of disabled people might be through mapping scenarios using futurist methods that enable people to identify and understand potential unanticipated outcomes from global emergencies [124]. This approach to planning would promote better healthcare and disability service management during such emergencies. However, disabled people must be involved in scenario planning because their unique insights and experience would ensure that any scenarios and subsequent planning would provide for their healthcare and disability service needs.

Disability-led research

The authors of this review are a group of researchers, including clinician researchers (GG, KMH, TNO) with personal lived experience of disability and/or caring for disabled family members. We have first-hand experience of difficulties accessing healthcare during the pandemic. Our sub-analysis that assessed if disabled researchers were involved in disability research and the availability of funding supporting research endeavours shines a spotlight on the additional vulnerability of disability research.

Unlike the growing body of COVID-19 research on the general population’s experiences, there is limited research on disabled people’s experiences by disabled people. Only six of the 14 reviewed papers in phase one, and eleven in phase two, indicated that the research authorship team included those with lived experience of disability. It is well recognised that disabled researchers are less likely to receive research funding and have been disproportionately impacted by the pandemic [125, 126], our findings confirmed this with 12 research teams indicating they had research funding and also had disabled researchers in the authorship team [13, 38, 55, 65, 68, 78, 79, 83, 91, 95, 98, 127]. Two of these studies come from this very team. Without the inclusion of disabled people, or family advocates, in health services research teams we suspect that healthcare research within the disability field will remain a research-by-product and not provide cogent recommendations for how to change health service delivery.

We contend that disabled researchers, particularly those conducting health research, must be supported by their institutions to carry out timely research that reflects and supports their community. Strategic funding should be made available to help this important cohort in our academic and clinical settings; a call supported by authors whose research was included in this review [77]. The disabled community should be privileged when assigning research funding on disability issues. Editors should also require information on the inclusion of disabled researchers in research that addresses disabled community issues.

Limitations

To our knowledge, this is the first scoping review that aims to summarise the current understanding of disabled people’s access to healthcare and disability services during the COVID-19 pandemic. Key databases were searched and relevant search terms used to collect as much literature as possible. Challenges in identifying published research could relate to studies being excluded because they (1) do not describe specific conditions as disabilities or use disability-specific keywords or subject areas, or (2) are not published in English. The former challenge highlights the importance of standardised search terms for disability and healthcare research; to mitigate the former challenge we deliberately chose to run a broad search strategy.

Conclusion

The COVID-19 pandemic experience has generated significant amounts of research, but only a small segment of this has focused on disabled people’s healthcare experience explicitly. There are many valuable lessons to be learnt from such research that can inform solutions for those accessing healthcare. These lessons become increasingly important because of the rise in disability due to long-COVID and an ageing global population. Enhanced health service planning to support disabled people during pandemics is best achieved by including disabled people in pre-pandemic, pandemic, and post-pandemic health system planning. Furthermore, this scoping review demonstrates an urgent need to fund research and charge health systems to be more responsive and inclusive to those in our community who are disabled. This means ensuring strategic support for disabled researcher development, capability building, and research investment.

Availability of data and materials

All data generated or analysed during this study are included in this published article [and its supplementary information files].

References

  1. United Nations. Factsheet on Persons with Disabilities. 2022.

  2. World Health Organization. Disability and Health. World Health Organization; 2021.

  3. Han Q, Zheng B, Daines L, Sheikh A. Long-term sequelae of COVID-19: a systematic review and meta-analysis of one-year follow-up studies on post-COVID symptoms. Pathogens. 2022;11(2):269.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  4. Mitchell D, Karr V. Crises, conflict and disability: Ensuring equality Mitchell D, Karr V, editors. Routledge; 2014.

  5. Perry MA, Ingham T, Jones B, Mirfin-Veitch B. “At Risk” and “vulnerable”! Reflections on inequities and the impact of COVID-19 on disabled people. N Z J Physiother. 2020;48(3):107–16.

    Google Scholar 

  6. Hung WW, Ross JS, Boockvar KS, Siu AL. Recent trends in chronic disease, impairment and disability among older adults in the United States. BMC Geriatr. 2011;11(1):47.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Dixon-Obarra A, Horner-Johnson W. Disability status as an antecedent to chronic conditions: National Health Interview Survey, 2006–2012. Prev Chronic Dis. 2014;11:130251.

    Article  Google Scholar 

  8. Kim MA, Yi J, Sung J, Hwang S, Howey W, Jung SM. Changes in life experiences of adults with intellectual disabilities in the COVID-19 pandemics in South Korea. Disabil Health J. 2021;14(4):101120.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Lunsky Y, Bobbette N, Selick A, Jiwa M. “The doctor will see you now”: direct support professionals’ perspectives on supporting adults with intellectual and developmental disabilities accessing health care during COVID-19. Disabil Health J. 2021;14(3):101066.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  10. Sabatello M, Blankmeyer Burke T, McDonald K, Appelbaum P. Disability, ethics, and health care in the COVID-19 pandemic. Am J Public Health. 2020;110(10):1523–7.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Pettinicchio D, Maroto M, Chai L, Lukk M. Findings from an online survey on the mental health effects of COVID-19 on Canadians with disabilities and chronic health conditions. Disabil Health J. 2021;14(3):101085.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Theis N, Campbell N, De Leeuw J, Owen M, Schenke KC. The effects of COVID-19 restrictions on physical activity and mental health of children and young adults with physical and/or intellectual disabilities. Disabil Health J. 2021;14(3):101064.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Reber L, Kreschmer JM, DeShong GL, Meade MA. Fear, isolation, and invisibility during the COVID-19 pandemic: a qualitative study of adults with physical disabilities in marginalized communities in Southeastern Michigan in the United States. Disabilities. 2022;2(1):119–30.

    Article  Google Scholar 

  14. Holm ME, Suvisaari J, Koponen P, Koskinen S, Sainio P. Incidence and persistence of psychological distress during the COVID-19 pandemic among individuals with and without disability. J Psychosom Res. 2023;165:111127.

    Article  PubMed  Google Scholar 

  15. Gonzalez M, Zeidan J, Lai J, Yusuf A, Wright N, Steiman M, et al. Socio-demographic disparities in receipt of clinical health care services during the COVID-19 pandemic for Canadian children with disability. BMC Health Serv Res. 2022;22(1):1434.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Frank K. Difficulties accessing health care in Canada during the COVID-19 pandemic: Comparing individuals with and without chronic conditions. Health Rep. 2022;33(11):16–26.

    PubMed  Google Scholar 

  17. Schwartz AE, Munsell EGS, Schmidt EK, Colón-Semenza C, Carolan K, Gassner DL. Impact of COVID-19 on services for people with disabilities and chronic health conditions. Disabil Health J. 2021;14(3):101090.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Tuakli-Wosornu YA, Wang K, Fourtassi M, Stratton C, Muñoz-Velasco LP, Hajjioui A, et al. Impact of the COVID-19 pandemic on the perceived physical and mental health and healthy lifestyle behaviors of people with disabilities: a quantitative analysis of the international community survey. Am J Phys Med Rehabil. 2023;102(2):144–50.

    Article  PubMed  Google Scholar 

  19. Koks-Leensen MCJ, Schalk BWM, Bakker-van Gijssel EJ, Timen A, Nägele ME, van den Bemd M, et al. Risk for severe COVID-19 outcomes among persons with intellectual disabilities, the Netherlands. Emerg Infect Dis. 2023;29(1):118–26.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Xie Z, Hong Y-R, Tanner R, Marlow NM. People with functional disability and access to health care during the COVID-19 pandemic: a US population-based study. Med Care. 2023;61(2):58–66.

    Article  PubMed  Google Scholar 

  21. Özalp Akın E, Eminoğlu FT, Doğulu N, Koç Yekeduz M, Öncül U, Akpınar F, et al. Unmet needs of children with inherited metabolic disorders in the COVID-19 pandemic. Turk Arch Pediatr. 2022;57(3):335–41.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Ivancic L, Bond DM, Nassar N. Impact of the COVID-19 pandemic on access and use of health services by middle-aged and older Australians. Aust Health Rev. 2023;47(1):100–9.

    Article  PubMed  Google Scholar 

  23. Imlach F, McKinlay E, Kennedy J, Pledger M, Middleton L, Cumming J, et al. Seeking healthcare during lockdown: challenges, opportunities and lessons for the future. Int J Health Policy Manag. 2021;11(8):1316–24.

    PubMed  PubMed Central  Google Scholar 

  24. Flynn S, Hatton C. Health and social care access for adults with learning disabilities across the UK during the COVID-19 pandemic in 2020. Tizard Learn Disabil Rev. 2021;26(3):174–9.

    Article  Google Scholar 

  25. Hole R, Stainton T. COVID 19: the precarity of families and disability. Child Youth Serv. 2020;41(3):266–8.

    Article  Google Scholar 

  26. Toseeb U, Asbury K. A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: Part 1, quantitative findings. Autism. 2023;27(1):105–16.

    Article  PubMed  Google Scholar 

  27. Lapierre N, Olatona O, Labrie D, Gagnon M, Paquette Raynard E, Mortenson WB, et al. Providing community services for persons with disabilities during the COVID-19 pandemic: a scoping review. Health Soc Care Community. 2022;30(6):e3746–60.

    Article  PubMed  Google Scholar 

  28. Jepson M, Whittaker GA, Robins L, Long KM, Williams CM, Russell G, et al. Australian public health COVID-19 messaging is missing its mark in some vulnerable communities and people who reject COVID-19 safety advice. J Glob Health. 2022;12:05037.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Bernard A, Weiss S, Rahman M, Ulin SS, D’Souza C, Salgat A, et al. The impact of COVID-19 and pandemic mitigation measures on persons with sensory impairment. Am J Ophthalmol. 2022;234:49–58.

    Article  CAS  PubMed  Google Scholar 

  30. Cadwgan J, Goodwin J, Arichi T, Patel A, Turner S, Barkey S, et al. Care in COVID: a qualitative analysis of the impact of COVID-19 on the health and care of children and young people with severe physical neurodisability and their families. Child Care Health Dev. 2022;48(6):924–34.

    Article  PubMed  Google Scholar 

  31. Lai B, Wen H, Sinha T, Davis D, Swanson-Kimani E, Wozow C, et al. The impact of COVID-19 on the lifestyles of adolescents with cerebral palsy in the Southeast United States. Disabil Health J. 2022;15(2):101263.

    Article  PubMed  Google Scholar 

  32. Weir E, Allison C, Baron-Cohen S. Autistic adults have poorer quality healthcare and worse health based on self-report data. Mol Autism. 2022;13(1):23.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  33. Correia LPF, Ferreira MA. Health care of deaf persons during coronavirus pandemics. Rev Bras Enferm. 2021;75(suppl 1):e20201036.

    Article  PubMed  Google Scholar 

  34. Featherstone C, Sharpe RA, Axford N, Asthana S, Ball S, Husk K. Barriers to healthcare and their relationship to well-being and social support for autistic adults during COVID-19. Prim Health Care Res Dev. 2022;23:e79.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Zhang S, Hao Y, Feng Y, Lee NY. COVID-19 pandemic impacts on children with developmental disabilities: Service disruption, transition to telehealth, and child wellbeing. Int J Environ Res Public Health. 2022;19(6):3259.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  36. D’Alvano G, Buonanno D, Passaniti C, De Stefano M, Lavorgna L, Tedeschi G, et al. Support needs and interventions for family caregivers of patients with Amyotrophic Lateral Sclerosis (ALS): a narrative review with report of telemedicine experiences at the time of COVID-19 pandemic. Brain Sci. 2022;12(1):49.

    Article  Google Scholar 

  37. Brennan CS. Disability rights during the pandemic: a global report on findings of the COVID-19 Disability Rights Monitor2020 12 August 2022. Available from: https://www.internationaldisabilityalliance.org/sites/default/files/disability_rights_during_the_pandemic_report_web_pdf_1.pdf.

  38. Chowdhury S, Urme SA, Nyehn BA, Mark HR, Hassan MT, Rashid SF, et al. Pandemic portraits—An intersectional analysis of the experiences of people with disabilities and caregivers during COVID-19 in Bangladesh and Liberia. Soc Sci. 2022;11(9):378.

    Article  Google Scholar 

  39. van Kessel R, Hrzic R, O’Nuallain E, Weir E, Wong BLH, Anderson M, et al. Digital health paradox: International policy perspectives to address increased health inequalities for people living with disabilities. J Med Internet Res. 2022;24(2):e33819.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Mhiripiri NA, Midzi R. Fighting for survival: persons with disabilities’ activism for the mediatisation of COVID-19 information. Media Int Aust. 2020;178(1):151–67.

    Article  Google Scholar 

  41. Govia I, Palmer T, Stubbs M, Harris M, Bogle D, Miller S, et al. Vulnerable group members coping with COVID-19 in Jamaica: a qualitative study. Traumatology. 2022;28:393–402.

    Article  Google Scholar 

  42. Kuipers SJ, Cramm JM, Nieboer AP. The importance of patient-centered care and co-creation of care for satisfaction with care and physical and social well-being of patients with multi-morbidity in the primary care setting. BMC Health Serv Res. 2019;19(1):13.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Yagmur Y, Gul S. COVID-19 pandemic: problems and solution suggestions for disabled women. Int J Caring Sci. 2022;15(2):1620–4.

    Google Scholar 

  44. Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19–32.

    Article  Google Scholar 

  46. Tricco A, Lillie E, Zarin W, O’Brien K, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467–73.

    Article  PubMed  Google Scholar 

  47. Buse DC, Gerstein MT, Houts CR, McGinley JS, Uzumcu AA, McCarrier KP, et al. Impact of the COVID-19 pandemic on people living with migraine: results of the MiCOAS qualitative study. Headache. 2022;62(3):284–93.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Chaiban L, Benyaich A, Yaacoub S, Rawi H, Truppa C, Bardus M. Access to primary and secondary health care services for people living with diabetes and lower-limb amputation during the COVID-19 pandemic in Lebanon: a qualitative study. BMC Health Serv Res. 2022;22(1):593.

    Article  PubMed  PubMed Central  Google Scholar 

  49. Currie G, Finlay B, Seth A, Roth C, Elsabbagh M, Hudon A, et al. Mental health challenges during COVID-19: perspectives from parents with children with neurodevelopmental disabilities. Int J Qual Stud Health Well-being. 2022;17(1):2136090.

    Article  PubMed  PubMed Central  Google Scholar 

  50. Dean NA, Marwaha A, Grasdal M, Leong S, Mesa A, Krassioukov AV, et al. Perspectives from the spinal cord injury community with teleSCI services during the COVID-19 pandemic: a qualitative study. Disabil Rehab Assist Technol 2022:1–8.

  51. Filbay S, Bennell KL, Morello R, Smith L, Hinman RS, Lawford BJ. Exploring experiences with telehealth-delivered allied healthcare services for people with permanent and significant disabilities funded through a national insurance scheme: a qualitative study examining challenges and suggestions to improve services. BMJ Open. 2022;12(9):e065600.

    Article  PubMed  PubMed Central  Google Scholar 

  52. Forslund T, Fernqvist S, Tegler H. Parents with intellectual disability reporting on factors affecting their caregiving in the wake of the COVID-19 pandemic: a qualitative study. J Appl Res Intellect Disabil. 2022;35(6):1380–9.

    Article  PubMed  Google Scholar 

  53. Fridell A, Norrman HN, Girke L, Bölte S. Effects of the Early Phase of COVID-19 on the Autistic Community in Sweden: A Qualitative Multi-Informant Study Linking to ICF. Int J Environ Res Public Health. 2022;19(3):1268.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  54. LaVela SL, Wu J, Nevedal AL, Harris AHS, Frayne SM, Arnow KD, et al. The impact of the COVID-19 pandemic on individuals living with spinal cord injury: a qualitative study. Rehabil Psychol 2022;68(1):12–24.

  55. Pellicano E, Brett S, den Houting J, Heyworth M, Magiati I, Steward R, et al. COVID-19, social isolation and the mental health of autistic people and their families: a qualitative study. Autism. 2022;26(4):914–27.

    Article  PubMed  Google Scholar 

  56. Portillo-Aceituno A, Calderón-Bernal A, Pérez-Corrales J, Fernández-de-Las-Peñas C, Palacios-Ceña D, Güeita-Rodríguez J. The impact of digital physical therapy during COVID-19 lockdown in children with developmental disorders: a qualitative study. Braz J Phys Ther. 2022;26(5):100445.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Selick A, Durbin J, Hamdani Y, Rayner J, Lunsky Y. Accessibility of virtual primary care for adults with intellectual and developmental disabilities during the COVID-19 pandemic: qualitative study. JMIR Form Res. 2022;6(8):e38916.

    Article  PubMed  PubMed Central  Google Scholar 

  58. Smythe T, Mabhena T, Murahwi S, Kujinga T, Kuper H, Rusakaniko S. A path toward disability-inclusive health in Zimbabwe Part 2: a qualitative study on the national response to COVID-19. Afr J Disabil. 2022;11:991.

    PubMed  PubMed Central  Google Scholar 

  59. Xu D, Ma S, Yan C, Zhao Z. Technology challenges among deaf and hard of hearing elders in China during COVID-19 pandemic emergency isolation: a qualitative study. Front Public Health. 2023;10:1017946.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Caldwell J, Heyman M, Atkins M, Ho S. Experiences of individuals self-directing medicaid home and community-based services during COVID-19. Disabil Health J. 2022;15(3):101313.

    Article  PubMed  PubMed Central  Google Scholar 

  61. Chirico I, Ottoboni G, Giebel C, Pappadà A, Valente M, Degli Esposti V, et al. COVID-19 and community-based care services: experiences of people living with dementia and their informal carers in Italy. Health Soc Care Community. 2022;30(5):e3128–37.

    Article  PubMed  Google Scholar 

  62. Costa B, McWilliams D, Blighe S, Hudson N, Hotton M, Swan MC, et al. Isolation, uncertainty and treatment delays: parents’ experiences of having a baby with cleft lip/palate during the Covid-19 pandemic. Cleft Palate Craniofac J. 2021;60(1):82–92.

    Article  PubMed  Google Scholar 

  63. Dodds RL, Maurer KJ, Montgomery LS, Cutting S, Jilek C. Self-advocate perspectives on COVID-19 in Urban Los Angeles: impacts on autonomy and access to supports. J Intellect Dev Disabil. 2022;47(4):339–52.

    Article  Google Scholar 

  64. Filler T, Benipal PK, Minhas RS, Suleman S. Exploring the impact of COVID-19 on families of children with developmental disabilities: a community-based formative study. Paediatr Child Health. 2022;27(8):476–81.

    Article  PubMed  PubMed Central  Google Scholar 

  65. Good G, Nazari Orakani S, Officer T, Roguski M, McBride-Henry K. Access to health and disability services for blind New Zealanders during the COVID-19 pandemic 2020–2022. J Vis Impair Blind. 2022;116(6):830–6.

    Article  PubMed  PubMed Central  Google Scholar 

  66. Goodley D, Lawthom R, Liddiard K, Runswick-Cole K. Affect, dis/ability and the pandemic. Soci Health Illn 2022:1–18.

  67. Gul S, Ygmur Y. The access of women with disabilities to reproductive health services during the COVID-19 pandemic: a qualitative study. Int J Caring Sci. 2022;15(2):1242–9.

    Google Scholar 

  68. Hall KAE, Deusdad B, D’Hers Del Pozo M, Martínez-Hernáez Á. how did people with functional disability experience the first COVID-19 lockdown? A thematic analysis of youtube comments. Int J Environ Res Public Health. 2022;19(17):10550.

    Article  PubMed  PubMed Central  Google Scholar 

  69. Hielscher L, Ludlow A, Mengoni SE, Rogers S, Irvine K. The experiences of new mothers accessing feeding support for infants with down syndrome during the COVID-19 pandemic. Int J Dev Disabil 2022:1–10.

  70. Linden MA, Forbes T, Brown M, Marsh L, Truesdale M, McCann E, et al. Impact of the COVID-19 pandemic on family carers of those with profound and multiple intellectual disabilities: perspectives from UK and Irish Non-Governmental Organisations. BMC Public Health. 2022;22(1):2095.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  71. Mbazzi FB, Nalugya R, Kawesa E, Nimusiima C, King R, van Hove G, et al. The impact of COVID-19 measures on children with disabilities and their families in Uganda. Disabil Soc. 2022;37(7):1173–96.

    Article  Google Scholar 

  72. Mitwalli S, Kiwan D, Abdul-Samad L, Giacaman R. The double burden of COVID-19 and Israeli military rule on persons with disabilities in the West Bank of the occupied Palestinian territory. Front Psychol. 2022;13:955828.

    Article  PubMed  PubMed Central  Google Scholar 

  73. Mohamed H, Wamera E, Malima W. Access to water, sanitation and hygiene services and other preventive measures against COVID-19 among people with disabilities, Dodoma, Tanzania. Am J Trop Med Hyg. 2022;107(3):527–33.

    Article  PubMed  PubMed Central  Google Scholar 

  74. Nguyen L, Bui M. Social protection response to COVID-19: experiences and lessons from Vietnam. Asia Pac J Soc Work Dev. 2022;32(4):278–93.

    Article  Google Scholar 

  75. Nicholas DB, Zulla RT, Conlon O, Dimitropoulos G, Urschel S, Rapoport A, et al. Mental health impacts of the COVID-19 pandemic on children with underlying health and disability issues, and their families and health care providers. Paediatr Child Health. 2022;27(Suppl 1):S33–9.

    Article  PubMed  Google Scholar 

  76. Oude Lansink ILB, van Stam PCC, Schafrat ECWM, Mocking M, Prins SD, Beelen A, et al. ‘This battle, between your gut feeling and your mind. Try to find the right balance’: parental experiences of children with spinal muscular atrophy during COVID-19 pandemic. Child Care Health Dev. 2022;48(6):1062–70.

    Article  PubMed  Google Scholar 

  77. Pincock K, Jones N, Baniodeh K, Iyasu A, Workneh F, Yadete W. COVID-19 and social policy in contexts of existing inequality: experiences of youth with disabilities in Ethiopia and Jordan. Disabil Soc 2022:1–23.

  78. Roguski M, Officer T, Nazari Orakani S, Good G, Händler-Schuster D, McBride-Henry K. Ableism, human rights, and the COVID-19 pandemic: healthcare-related barriers experienced by Deaf people in Aotearoa New Zealand. Int J Environ Res Public Health. 2022;19(24):17007.

    Article  PubMed  PubMed Central  Google Scholar 

  79. Saketkoo LA, Jensen K, Nikoletou D, Newton JJ, Rivera FJ, Howie M, et al. Sarcoidosis illuminations on living during COVID-19: patient experiences of diagnosis, management, and survival before and during the pandemic. J Patient Exp. 2022;9:23743735221075556.

    PubMed  PubMed Central  Google Scholar 

  80. Sarica AD, Ulu-Ercan E, Coşkun UH. COVID-19 and Turkish University students with visual impairments: an in-depth inquiry. J Vis Impair Blind. 2022;116(6):817–29.

    Article  PubMed  PubMed Central  Google Scholar 

  81. Sarker D, Shrestha S, Tamang SKB. “We’ll starve to death”: The consequences of COVID-19 over the lives of poor people with disabilities in rural Nepal. Asian Soc Work Policy Rev. 2022;16(2):96–103.

    Article  PubMed  PubMed Central  Google Scholar 

  82. Scherer N, Wiseman P, Watson N, Brunner R, Cullingworth J, Hameed S, et al. ‘Do they ever think about people like us?': The experiences of people with learning disabilities in England and Scotland during the COVID-19 pandemic. Crit Soc Policy 2022;0:25.

  83. Sebring JCH, Capurro G, Kelly C, Jardine CG, Tustin J, Driedger SM. “None of it was especially easy”: improving COVID-19 vaccine equity for people with disabilities. Can J Public Health. 2022;113(6):887–97.

    Article  PubMed  PubMed Central  Google Scholar 

  84. Toccalino D, Haag HL, Estrella MJ, Cowle S, Fuselli P, Ellis MJ, et al. Addressing the shadow pandemic: COVID-19 related impacts, barriers, needs, and priorities to health care and support for women survivors of intimate partner violence and brain injury. Arch Phys Med Rehabil. 2022;103(7):1466–76.

    Article  PubMed  PubMed Central  Google Scholar 

  85. Turcheti N, Laurent AA, Delgado C, Sainati K, Johnson K, Wong EY. Social, economic and overall health impacts of COVID-19 on people living with disabilities in King County, WA. Int Jo Environ Res Public Health. 2022;19(17):10520.

    Article  Google Scholar 

  86. Vestal LE, Schmidt AM, Dougherty NL, Sherby MR, Newland JG, Mueller NB, et al. COVID-19-related facilitators and barriers to in-person learning for children with intellectual and development disabilities. J Sch Health 2022;93:176–85.

  87. Waltz M, Canter C, Bensen JT, Berg JS, Foreman AKM, Grant TL, et al. The burden of COVID-19 on caregivers of children with suspected genetic conditions: a therapeutic odyssey. Phys Occup Ther Pediatr 2022:1–15.

  88. Bailey A, Harris MA, Bogle D, Jama A, Muir SA, Miller S, et al. Coping With COVID-19: Health risk communication and vulnerable groups. Disaster Med Public Health Prep 2021;17:1–6.

  89. Dai R, Hu L. Inclusive communications in COVID-19: a virtual ethnographic study of disability support network in China. Disabil Soc. 2022;37(1):3–21.

    Article  Google Scholar 

  90. Embregts P, Heerkens L, Frielink N, Giesbers S, Vromans L, Jahoda A. Experiences of mothers caring for a child with an intellectual disability during the COVID-19 pandemic in the Netherlands. Journal of Intellectual Disability Research. 2021;65(8):760–71.

  91. Epstein S, Campanile J, Cerilli C, Gajwani P, Varadaraj V, Swenor B. New obstacles and widening gaps: a qualitative study of the effects of the COVID-19 pandemic on U.S. adults with disabilities. Disabil Health J. 2021;14(3):101103.

    Article  PubMed  PubMed Central  Google Scholar 

  92. Lindsay S, Ahmed H, Apostolopoulos D. Facilitators for coping with the COVID-19 pandemic: Online qualitative interviews comparing youth with and without disabilities. Disabil Health J. 2021;14(4):101113.

    Article  PubMed  PubMed Central  Google Scholar 

  93. Mathias K, Rawat M, Philip S, Grills N. “We’ve got through hard times before”: acute mental distress and coping among disadvantaged groups during COVID-19 lockdown in North India - a qualitative study. Int J Equity Health. 2020;19(1):224.

    Article  PubMed  PubMed Central  Google Scholar 

  94. Kwegyir TA. Describing the experiences of older persons with visual impairments during COVID-19 in rural Ghana. J Adult Prot. 2020;22(6):371–83.

    Article  Google Scholar 

  95. Xu D, Yan C, Zhao Z, Weng J, Ma S. External communication barriers among elderly deaf and hard of hearing people in China during the COVID-19 pandemic emergency Isolation: a qualitative study. Int J Environ Res Public Health. 2021;18(21):11519.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  96. Bergmans RS, Chambers-Peeple K, Aboul-Hassan D, Dell’Imperio S, Martin A, Wegryn-Jones R, et al. Opportunities to improve long COVID Care: implications from semi-structured interviews with black patients. Patient Centered Outcomes Res. 2022;15(6):715–28.

    Article  Google Scholar 

  97. Burke MM, Cheung WC, Li C, DaWalt L, Segal J, Taylor JL. Parental perceptions of service access for transition-aged youth with autism during COVID-19. Intellect Dev Disabil. 2022;60(5):369–81.

    Article  PubMed  Google Scholar 

  98. AlMeraj Z, Abu Doush I, Alhuwail D, Shama S, AlBahar A, Al-Ramahi M. Access and experiences of arabic native speakers with disabilities on social media during and after the world pandemic. Int J Human Comp Interact. 2023;39(4):923–48.

    Article  Google Scholar 

  99. Bellon M, Idle J, Lay K, Robinson S. Community in the pandemic: experiences and strategies by people with acquired brain injury and their families during COVID-19. Disabil Rehabil 2022;45:1–8.

  100. Bozkus-Genc G, Sani-Bozkurt S. How parents of children with autism spectrum disorder experience the COVID-19 pandemic: Perspectives and insights on the new normal. Res Dev Disabil. 2022;124:104200.

    Article  PubMed  PubMed Central  Google Scholar 

  101. Wanjagua R, Hepburn S-J, Faragher R, John ST, Gayathri K, Gitonga M, et al. Key learnings from COVID-19 to sustain quality of life for families of individuals with IDD. J Policy Pract Intellect Disabil. 2022;19(1):72–85.

    Article  PubMed  PubMed Central  Google Scholar 

  102. Mazzoni N, Bentenuto A, Filosofi F, Tardivo A, Strathearn L, Zarei K, et al. Parenting a child with a neurodevelopmental disorder during the early stage of the COVID-19 Pandemic: quantitative and qualitative cross-cultural fndings. Int J Environ Res Public Health 2023;20(1):15.

  103. Cochran AL, McDonald NC, Prunkl L, Vinella-Brusher E, Wang J, Oluyede L, et al. Transportation barriers to care among frequent health care users during the COVID pandemic. BMC Public Health. 2022;22(1):1783.

    Article  PubMed  PubMed Central  Google Scholar 

  104. Goddard KS, Schulz J, Nzuki I, Hall JP. Examining the Impacts of the Coronavirus Pandemic and Social Distancing on the Health of People With Mobility Disabilities. Frontiers in Public Health. 2022;10:8.

  105. Hochman Y, Shpigelman C-N, Holler R, Werner S. “Together in a pressure cooker”: Parenting children with disabilities during the COVID-19 lockdown. Disabil Health J. 2022;15(3):7.

  106. Isensee C, Schmid B, Marschik PB, Zhang D, Poustka L. Impact of COVID-19 pandemic on families living with autism: an online survey. Res Dev Disabil. 2022;129:104307.

    Article  PubMed  PubMed Central  Google Scholar 

  107. Navas P, Verdugo MÁ, Martínez S, Amor AM, Crespo M, Deliu MM. Impact of COVID-19 on the burden of care of families of people with intellectual and developmental disabilities. J Appl Res Intellect Disabil. 2022;35(2):577–86.

    Article  PubMed  Google Scholar 

  108. Pinkerton LM, Murphy A, Bruckner E, Risser H. Therapy service delivery for children with disabilities during COVID-19: Parent perceptions and implementation recommendations. J Community Psychol 2022;1-12.

  109. Sage R, Standley K, Ipsen C. “Everything is a mess. I’m just trying to survive it.”: Impacts of COVID-19 on personal assistance services. J Health Care Poor Underserved. 2022;33(4):1844–64.

    Article  PubMed  Google Scholar 

  110. Sellmaier C, Kim J. Working and caring for a disabled adopted child during a pandemic. Child Fam Soc Work. 2023;28(1):222–35.

    Article  Google Scholar 

  111. Sharma Y, Whiting A, Dutta T. A survey of the challenges faced by individuals with disabilities and unpaid caregivers during the COVID-19 pandemic. Int J Environ Res Public Health. 2022;19(16):10075.

    Article  PubMed  PubMed Central  Google Scholar 

  112. Silver H, Rosselot H, Shaffer R, Lozano R. The impact of the COVID-19 pandemic on school-aged children with Fragile X Syndrome. Genes. 2022;13(9):1666.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  113. Solomon Sanders J, Pillai R, Sturley R, Sillau S, Asato M, Aravamuthan B, et al. Impact of the COVID-19 pandemic on the behavioral health of people with intellectual and developmental disabilities. Psychiatr Serv. 2022;73(12):1389–92.

    Article  Google Scholar 

  114. Tetali S, Kamalakannan S, Sadanand S, Lewis MG, Varughese S, Hans A, et al. Evaluation of the impact of the first wave of COVID-19 and associated lockdown restrictions on persons with disabilities in 14 states of India. Int J Environ Res Public Health. 2022;19(18):11373.

    Article  PubMed  PubMed Central  Google Scholar 

  115. Zebehazy KT, Rosenblum LP, Thompson KM. The impact of COVID-19 on transportation of adults with visual impairments. J Vis Impair Blind. 2022;116(6):794–805.

    Article  PubMed  PubMed Central  Google Scholar 

  116. Saunders GH, Jackson IR, Visram AS. Impacts of face coverings on communication: an indirect impact of COVID-19. Int J Audiol. 2021;60(7):495–506.

    Article  PubMed  Google Scholar 

  117. Sutter EN, Smith Francis L, Francis SM, Lench DH, Nemanich ST, Krach LE, et al. Disrupted access to therapies and impact on well-being during the COVID-19 pandemic for children with motor impairment and their caregivers. Am J Phys Med Rehabil. 2021;100(9):821–30.

    Article  PubMed  PubMed Central  Google Scholar 

  118. Arbour-Nicitopoulos KP, James ME, Moore SA, Sharma R, Martin Ginis KA. Movement behaviours and health of children and youth with disabilities: impact of the 2020 COVID-19 pandemic. Paediatr Child Health. 2022;27(Supplement_1):S66–71.

    Article  PubMed  Google Scholar 

  119. Arichi T, Cadwgan J, McDonald A, Patel A, Turner S, Barkey S, et al. Neurodisability care in the time of COVID-19. Child Care Health and Dev. 2022;48(6):901–5.

    Article  Google Scholar 

  120. Binder-Olibrowska KW, Wrzesińska MA, Godycki-Ćwirko M. Is telemedicine in primary care a good option for Polish patients with visual impairments outside of a pandemic? Int J Environ Res Public Health. 2022;19(11):6357.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  121. Rohn EJ, Hearn JH, Philippus AM, Monden KR. “It’s been a double-edged sword”: an online qualitative exploration of the impact of COVID-19 on individuals with spinal cord injury in the US with comparisons to previous UK findings. J Spinal Cord Med. 2022:1–13.

  122. Tsiboe AK. Describing the experiences of older persons with visual impairments during COVID-19 in rural Ghana. J Adult Prot. 2020;22(6):371–83.

    Article  Google Scholar 

  123. United Nations. Convention on the Rights of Persons with Disabilities (CRPD). 2006.

  124. Gamhewage G, Mylonas C, Mahmoud M, Stucke O. Developing the first-ever global learning strategy to frame the future of learning for achieving public health goals. J Oral Biol Craniofac Res. 2022;12(1):74–6.

    Article  PubMed  Google Scholar 

  125. Swenor B, Munoz B, Meeks L. A decade of decline: grant funding for researchers with disabilities 2008 to 2018. PLoS One. 2020;15(3):e0228686.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  126. Douglas HM, Settles IH, Cech EA, Montgomery GM, Nadolsky LR, Hawkins AK, et al. Disproportionate impacts of COVID-19 on marginalized and minoritized early-career academic scientists. PLoS One. 2022;19(9):e0274278.

    Article  Google Scholar 

  127. Nazari Orakani S, McBride-Henry K, Officer T, Roguski M, Good G. Experiencing of disabled people in accessing health care during the COVID-19 pandemic. 2022. Available from: https://www.wgtn.ac.nz/health/research/research-projects/Experiences-of-disabled-people-accessing-health-care-during-the-COVID-19-pandemic.pdf.

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Acknowledgements

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Funding

This research was partly supported by a Health Lotteries Grant (number 4133), which supported a portion of SNO time during phase one of this project. The funders played no role in this scoping review.

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KMH: Conceptualization, methodology, Phase one and two literature screening, analysis of literature, original draft preparation, reviewing and editing. GG: Phase one literature screening, reviewing and editing; Phase two reviewing and editing. SNO: Phase one data search, literature review, literature screening, editing. MR: Phase one literature screening, reviewing and editing; Phase two reviewing and editing. TNO: methodology, Phase one and two data search, literature review, analysis of literature, reviewing and editing. The author(s) read and approved the final manuscript.

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Correspondence to Karen McBride-Henry.

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McBride-Henry, K., Nazari Orakani, S., Good, G. et al. Disabled people’s experiences accessing healthcare services during the COVID-19 pandemic: a scoping review. BMC Health Serv Res 23, 346 (2023). https://doi.org/10.1186/s12913-023-09336-4

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