Abstract
Keywords
Disabled people are more likely to experience health inequities and comorbid conditions, despite accessing health care twice as frequently as nondisabled populations (Perry et al., 2020). Further, disabled people may need to access more health care and disability services during disasters, emergencies, and pandemics. In addition, a systemic lack of emergency preparation and planning means disabled people also experience worse outcomes in disasters. Our investigation of the unique Aotearoa New Zealand (hereafter, Aotearoa) experience of the pandemic emphasizes specific impacts on New Zealanders with impaired vision (i.e., blindness or low vision) that interrupted the effective delivery of health care and disability support services.
Aotearoa's COVID-19 Experience
On Wednesday, March 25, 2020, at 11:59 p.m., Aotearoa went into government-mandated isolation. This lockdown was one of the most stringent worldwide (Withers & Bloomberg, 2020) and was hailed as successfully containing the COVID-19 outbreak and saving lives through virus elimination (Wilson, 2020). New Zealanders, largely unified in a goal to eliminate COVID-19, were instructed to stay within their home “bubbles,” limiting physical contact to the immediate household. Nobody was to drive or leave their neighborhoods, except for essential business, including receiving health care. Businesses, except for essential services (pharmacies, supermarkets, clinics, petrol stations, and lifeline utilities), were closed. No restaurants were available; nor online shopping, other than essential groceries. Playgrounds were roped off. Schools were closed.
Aotearoa successfully temporarily eradicated COVID-19 in 2020 and lives returned mostly to normal. In August 2021, Aotearoa returned to strict lockdown for 3 weeks when one Delta variant case of COVID was discovered in the largest city, Auckland. Parts of Aotearoa enjoyed minimal restrictions, but Auckland remained in lockdown, and schools closed there for several months as the Delta variant surged.
The year 2021 brought vaccines to Aotearoa, along with vaccine mandates for all educators, all who worked with disabled adults or children in any capacity, as volunteers or paid workers, and all health care workers. Subsequently, mask-wearing became strongly encouraged. Internal borders around Auckland were monitored and fines and arrests were imposed upon those breaching these borders. National borders remained closed to everyone but citizens and permanent legal residents returning to Aotearoa. All individuals re-entering the country stayed in managed isolation and quarantine for 14 days following their return. As case numbers grew, however, some people were permitted to isolate at home under government supervision.
In early 2022, Aotearoa began to relax its restrictions and mandates and introduced a new “traffic light” protection framework that excluded lockdown as a tool, and our borders opened as the Omicron variant of COVID infiltrated the country. Later in 2022, the sophisticated track-and-trace scanning system was abandoned as the disease took hold, affecting 1.25 million (25% of the nation's population) and killing 1,432 by June 21, 2022 (Ministry of Health NZ, 2022).
The cohesive “Team of 5 Million” managing the pandemic waned in its group efforts. Disabled people were forgotten amidst a population resigned to eventual Omicron exposure and thoughts that “only” those with disabilities and underlying health conditions would die (Macalligan, 2022).
As fortunate as all in Aotearoa were to be relatively safe from COVID-19 infection and death, and as a general population had ways of managing well-being throughout our first lockdown (Imlach et al., 2021, 2020; Officer et al., 2022), disabled adults and children were a hidden minority. They experienced significant hardship and their needs were overlooked in planning documents, public policies, and protocols related to COVID-19. But globally there is a lack of extant literature exploring disabled people's experiences, needs, and perspectives.
The Current Study
Thorne et al.’s (1997) Interpretive Description methodology underpinned the research design and guided data collection and thematic analysis. The Victoria University of Wellington's Human Ethics Committee (#30121) provided ethics approval for this project.
Participants were recruited using a purposive sampling approach via a broad range of disability organizations, social media invitations, and the researchers’ networks. All participants provided written or verbal consent, or both. All interviews were audio recorded and transcribed by either a professional transcriptionist or a member of the research team. Interviews were conducted in English or with a New Zealand Sign Language interpreter. Sixty-two disabled people or parents of disabled children, aged 18 years or older were interviewed about their experiences in accessing health care and disability support services. Interviews ranged from 43 to 90 min. The interviews were then transcribed. Participants had the option of reviewing their transcripts. Following this step, descriptive inductive analysis was conducted through constant comparison of participant narratives. For the purpose of the present article, this analysis process involved the primary author listening to recordings multiple times to identify barriers specific to those with vision impairment, and then conducting initial coding of transcripts, before discussion among the research team. The findings were discussed with the research team to identify differences and similarities within the wider study cohort and confirmed with those from the community to verify the transferability of results.
A co-design analysis process was undertaken involving research team members who have lived experience of disability, including impaired vision. In analyzing results from participants who were vision impaired, this analysis also included consultation with and support from relevant service and consumer organizations. Initial findings have also been disseminated to research participants, government organizations, and those with an interest in disability supports, services, or advocacy mandates (see Nazari Orakani et al., 2022).
Initial interview findings for all 62 participants, which included people with various impairments, revealed a number of themes.
Reduced and Compromised Access to Services
The rapid transition to virtual health care disadvantaged disabled people, and surgeries and many essential medical and disability services were reduced or canceled.
Exacerbating Factors
There was a lack of public health messaging and policy-making planning and preparation that included disabled people. Vaccination and testing sites were often inaccessible, and although New Zealanders had drive-through access to many medical services, no alternatives to drive-through appointments, vaccinations, COVID-19 testing, or collection of home Rapid Antigen Tests (RAT) were available to those without cars or to those unable to drive.
Disability-Related Protective Factors
People with disability-related knowledge and skills and flexibility gained from disability-related problem-solving, family support, individualized funding, and good historical relationships with health and disability service providers had a greater ability to navigate health and disability systems. Participants reported satisfaction with telehealth systems and few reported extreme loneliness largely because of existing disability networks.
Short- and Long-Term Negative Impacts
Disabled people reported compromised physical and mental health and well-being, and decreased confidence and trust in health and disability support systems.
Compounding Vulnerabilities
Participants reported an intersection of issues that compounded their vulnerability throughout the pandemic. For example, lower rates of employment, lower income, housing insecurity, biases of the community, stereotypes, and reliance on public transport put disabled people at increased risk for poor service outcomes.
Population-Specific Impacts
Health and disability service impacts differed within the impairment populations; participants highlighted differences for those who are deaf, those living with mobility impairments, mental distress, and those with impaired vision.
Specific Barriers to Those With Vision Impairments
Ten participants identified as vision impaired. They ranged in age from 18 to 60 or more years and most were aged 18 to 29 years. Five were female, three were male, and two identified as nonbinary. Two participants identified as Māori, six as NZ European, and two as other European. This distribution is similar to the ethnicity of the New Zealand population of 16% Māori, 64% NZ European, and 12% other European (Statistics NZ, 2019). Participants ranged from registrable blind (legally blind) to totally blind. Participants used a variety of travel modes, including sighted guides, white canes, and dog guides. Themes that emerged from interviews with this group of respondents with impaired vision included: transportation, mental distress, loss of community, loss of physical contact and signals, and loss of support.
Transportation
Transportation was mentioned most frequently by those with impaired vision, and it was identified as the main barrier to health and disability support and services for these participants. The nation's uniquely strict lockdowns made it difficult to access public transportation, taxis, and shuttle services, or to even ask neighbors or friends for transportation since it was illegal to share space with someone outside your “bubble.” Participants with impaired vision spoke of being unable to access vaccinations, COVID-19 testing stations, general practice, hospitals, or specialist appointments, or to pick up RAT tests without being able to drive. They also described paying for and waiting in a taxi for a doctor to conduct a medical appointment inside the car. Several reported feeling stressed with the knowledge that the only option they had in a medical situation was to call an ambulance, at a significant cost. One participant stated, When you can't see, all you can do is phone an ambulance if you need medical help. And it is expensive. So I just didn't call when I had trouble breathing. (Participant 27)
Participants reported feeling unsafe using public transportation during the pandemic because they could not safely distance themselves from others. They also found the cost of alternatives to busses and trains to be too expensive and recommended that taxis and ambulances be free for people with impaired vision, especially when they need to travel to hospitals or medical appointments during public health crises.
Mental Distress
Most participants with impaired vision reported mental distress as an outcome of the Aotearoa lockdowns. Receiving a referral, finding funded mental health services, and attending appointments all proved difficult for these participants. Some referred to inabilities to access mental health crisis teams, psychiatrists, or nurses. Several mentioned that university counselors and community mental health services were ill-equipped or poorly qualified to address co-occurring mental distress and vision issues. One participant spoke about just getting through day by day during lockdowns. This participant was concerned about the long-term impacts on personal mental well-being, especially because a carefully planned, funded, overseas business trip was postponed and then canceled, affecting this individual's career and life plans. The entire process was made more difficult because of the time invested in the logistics of planning this trip as a person with impaired vision. COVID has impacted my short-term health badly. The long-term impact is on my mental health. (Participant 14)
Loss of Community
Many participants reported a loss of the community of other people with impaired vision. COVID-19's long-term impacts meant that social gatherings, sports events, and group activities organized for and by people with impaired vision were postponed indefinitely. One participant explained: We can't go into the office anymore and interact with people. … A lot of stuff has been over the phone and email … the whole community feel of [the blindness agency] that we’ve always had, has kind of gone. And that's made it very uncomfortable. … It was, I wouldn't say a second home, but somewhere we knew we could go and talk to people who would understand. It's our community. (Participant 3)
Loss of Physical Contact and Signals
Persons with impaired vision often rely on touch and physical contact for navigation. Yet, these participants reported challenges posed by social distancing when relying on others for human guide assistance and did not feel safe. Participants also reported difficulty in avoiding people in places like pharmacies, doctor's waiting rooms, and public transportation. The following quote is from a participant who previously enjoyed and relied upon a sighted guide for assistance, but the need to avoid others to limit the risk of contracting COVID-19 meant there were added difficulties and reduced independence It has caused me heaps of anxiety. To the point I wondered if I should seek help for it. I’m really nervous to go out. I struggle to go places like [the] supermarket, library. … [It] just really builds up anxiety. My cane alerts people to stay away from me and that helps but I tend to stay home more, which … makes you feel really low and useless. [It] takes that independence away. (Participant 4)
Limitations on being able to hear due to mask-wearing were reported as a barrier to accessing services. Mask-wearing affected the ability of people with impaired vision to use facial vision and echolocation, leading to compounding vulnerabilities. I was only going to places I really knew. I rely on being able to hear people when they talk, and masks muffle sounds and so do Perspex screens and I can't hear properly. I find it really hard to communicate with people. (Participant 4)
The inability to use vision to navigate formerly familiar, newly altered physical spaces caused significant stress. Locating new signs, finding office doorbells, and understanding the flow of places was challenging to those with impaired vision. Inconsistent placement of QR (quick response) codes used in the country's track-and-trace scanning system meant persons with impaired vision could not locate and scan QR signs. Arrows and “X”s marked on floors to indicate the proper flow of foot traffic and spacing for “social distancing” were impossible for people with impaired vision to identify. Similarly, knowing where to sanitize hands, sit down, pay, and wait for vaccines, COVID-19 tests, and more were significant barriers to accessing health care services.
Loss of Practical Support
In addition to the loss of physical cues, significant loss of support was reported by participants with impaired vision. During the strictest lockdown levels, people could not mix with neighbors or people outside their household, leading participants to report an inability to access basic needs, such as food and medicine. Those who had formal support from paid carers lost this support during lockdowns; this situation continues as there is a severe carer and support worker shortage due to sickness, fears of COVID-19 exposure, and agency inefficiencies. Support just stopped. I felt isolated and alone. I now have no help from disability services. (Participant 22)
Other barriers to health care and disability support during COVID-19 included challenges with technology, difficulties in using at-home COVID-19 tests without vision, loss of services such as orientation and mobility instruction during the lockdown, and the challenges of receiving appropriate communication in alternative formats from government and disability organizations.
Discussion and Conclusion
This research is the first identified project that has solely examined the experiences of those with impaired vision accessing health care and disability services during COVID-19 in Aotearoa. It is noted that a limitation of the research is the number of participants (n = 10). Nevertheless, it highlights that, despite Aotearoa's good track record in terms of managing the pandemic, groups were forgotten and marginalized by the collective response to managing COVID-19.
A reflective article by Aotearoa researchers considered the possible effects of COVID-19 on persons with impaired vision and theorized that digital inaccessibility and social isolation were problematic (Graham et al., 2021); research exploring accessing primary health care during lockdown raised similar issues (Imlach et al., 2021, 2020). It is notable, however, that vision-impaired participants in this current study generally found telehealth systems helpful, and most had good existing technology skills. Few reported strong feelings of loneliness.
Aotearoa has had a unique COVID-19 experience with some of the strictest government lockdowns in the world, stringent vaccine mandates, and extensive tracking and tracing requiring the cooperation of all Aotearoa citizens. Yet, the pandemic's effects continue to be felt by disabled populations, leaving them to navigate altered physical spaces, new policies affecting mask-wearing, public transportation, and social distancing coupled with staff shortages throughout the health and disability sector.
Implications for Practitioners
Blindness professionals must be aware of the possible disadvantages and impacts of pandemics and other disasters on people with impaired vision and their access to health and disability services. We recommend that policy makers include consultants with impaired vision in planning for future disasters, response, and recovery so that the diverse needs of these populations are managed. Such service planning must recognize that “one size does not fit all.” This study has identified major areas of impact of COVID-19 that highlight the nation's unique pandemic experience and identify potential short- and long-term impacts for citizens with impaired vision.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Lottery Health Research (grant no. E4133).
