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

BMC Health Services Research volume 23, Article number: 346 (2023) Cite this article

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
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Table 2 Search term variations and filters
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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
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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

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Table 4 Characteristics of reviewed studies
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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

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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, 89, 91, 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].

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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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Authors and Affiliations

  1. School of Nursing, Midwifery, and Health Practice, Wellington Faculty of Health, Victoria University of Wellington, Wellington, New Zealand

    Karen McBride-Henry, Solmaz Nazari Orakani & Tara N. Officer

  2. School of Health Sciences, Massey University, Palmerston North, New Zealand

    Gretchen Good

  3. Kaitiaki Research and Evaluation, Wellington, New Zealand

    Michael Roguski

Authors
  1. Karen McBride-Henry
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  2. Solmaz Nazari Orakani
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  3. Gretchen Good
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  4. Michael Roguski
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  5. Tara N. Officer
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Contributions

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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Keywords

BMC Health Services Research

ISSN: 1472-6963

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