Role of virtual modality for stroke caregivers in facilitating stroke survivors and assessing their perceptions in the midst of COVID-19 pandemic: A short review

Introduction

Stroke remains one of the most common non-communicable diseases to cause disability worldwide¹ with a staggering number of over 130 million disability-adjusted life years (DALYs).² The global burden of disease (GBD) study has estimated about 80 million stroke survivors living worldwide³ and the number continues to increase.³ Stroke survivors become either partially or completely dependent on their family members for assistance in not only their medical care, but also all other activities of daily living such as eating, drinking, bathing or grooming.⁴ The financial, emotional and psychological burden on the caregivers of such patients is immense,⁵ since it significantly affects their overall quality of life; potentially leaving them distressed and unable to properly care for themselves or their unwell loved ones.^4,5

The current COVID-19 pandemic has infected over 166 million people worldwide as of May 24, 2021, with the greatest number of confirmed cases in the USA, followed closely by India and Brazil.⁶ Hospitals are experiencing massive inflow of COVID-19-positive patients leading to closure of elective surgeries, out-patient clinics and deferral of non-COVID-19 related conditions, rendering access to healthcare even more difficult. Furthermore, the pandemic has created a new set of challenges for caregiving, due to government-imposed lockdowns, curfews and strict policies of social distancing.^7,8 About 79% of informal or family caregivers of stroke patients reported feeling more frustrated and 62% have not been sleeping well since the pandemic started.⁹ In the current crisis, the crucial role of virtual modality in stroke caregiving can no longer be ignored.^10,11 This virtual platform allows continued delivery of medical health services and other interventions without person-to-person contact, maintaining social distancing as a prerequisite for the prevention of spreading the COVID-19 virus.¹¹

Virtual modalities offer diverse interventions that focus on a wide variety of issues such as mental health,¹² caregiver burden,¹³ education¹⁴ and physical rehabilitation.¹⁵ Approximately 86% of stroke survivors and their caregivers have access to the internet¹⁶ and about 3 billion people own smartphones worldwide¹⁷ which further highlights the accessibility and feasibility of virtual interventions. Telemedicine video messages on stroke have also shown a reduction in post-stroke mortality by about 7%, highlighting the role of distant modality in educating patients and caregivers in a developing country.¹⁸ Educational videos have also helped improve motor rehabilitation in acute stroke patients.^15,19,20 For example, a study conducted by Huang et al. showed 30% reduction in cases of subdeltoid bursitis in patients who watched 15-minute videos twice a day during their hospital stay.²⁰

There is a dire need to implement distant modality in the current unprecedented time that mainly aims at reducing the stroke caregiver burden. Therefore, the main aim of this review is to highlight the crucial role of virtual modality to facilitate stroke caregivers in delivering care to stroke survivors amidst the COVID-19 pandemic. In addition, this review will also shed light on the perceptions of stroke caregivers in managing stroke survivors in the midst of this pandemic.

Methods

The methodological framework outlined by Levac and his colleagues was used for this review which was centered on previous work done by Arksey and O’Malley.^21,22 This guided systematic steps that included identifying appropriate studies according to the research objectives, selecting relevant studies, summarizing, and reporting the important findings. This search directed the role of distant modality in facilitating stroke caregivers to care for stroke patients in the COVID-19 pandemic and also explored care giver perception in this challenging time. This framework was used to categorize the range of interventions or modalities (virtual: online/video/teleconferences or telephone) which can be used to stimulate disease management and health promotion among stroke patients.

The paper has been designed and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) checklist.²³ The review protocol has been registered in the International Prospective Register for Systematic Reviews (PROSPERO) CRD42018087585.

Results

Using the above-mentioned methods, a total of 654 citations were retrieved, which, when reviewed, yielded 156 articles selected on title basis. From these, 70 articles were selected based on the abstracts. Next, the full texts of 21 articles were reviewed to verify if they meet the inclusion criteria and finally, five studies were selected and used for the purpose of this review.^7,25–28 The Preferred Reporting Items for Systematic Reviews and Meta analyses (PRISMA) flow diagram was used to report the study selection process (Figure 1). Since, given the nature of the selected studies, a formal systematic review or meta-analysis was not possible, a narrative review was composed by grouping the studies under the domain of telehealth applications using the methodological framework set out by Levac et al. (2010) based on the previous work of Arksey and O’Malley (2005). This approach gave our review the directive for identifying the relevant studies according to the research aim, selecting appropriate studies and then summarizing and reporting the main findings. The review included the data of five selected studies that used a virtual medium for stroke caregivers during the COVID-19 pandemic. Majority of the studies were conducted in the USA and other enrolled participants from Canada, China and Taiwan. The results are summarized in Table 4.

Figure 1. PRISMA flow diagram for database search of studies.

Discussion

The coronavirus disease 2019 (COVID-19) pandemic has undoubtedly complicated the stroke caregiver’s life and their ability to deliver care. Therefore, utilizing virtual medium serves as a unique supplemental resource in warranting patient care continuity. The current review provides evidence for the integration of distant modality in facilitating stroke caregivers to manage stroke survivors and it also assesses their perception in the midst of the pandemic.^7,25–28 Although there is a huge burden in terms of stroke caregiver’s cost and time to society, we identified only five studies that fall under the eligibility criteria for this review as there is growing evidence in this domain with respect to the pandemic. Therefore, the number of studies gathered from this review is comparatively low and are mainly from the developed world, significant data is still needed with directives for all experts to employ virtual health care services for the developing countries during the current unprecedented time. Due to lack of evidence and the heterogeneity of the distant approaches and outcomes measures, interpretation through meta-analyses is restricted. Overall, all studies included in this review scored 3 and above (on a scale of 4) on assessing quality based on the MMAT tool indicating the importance of the methodological rigor of research.

Given that to the authors knowledge, this is the first review that captures stroke caregivers’ perception and caters the role of distant modality in facilitating stroke caregivers to manage stroke survivors during the COVID-19 pandemic. The review reports evidence of launching distant modality at different levels of the healthcare system, including: ambulatory neurology clinics, family conferences, virtual speech, language and cognitive rehabilitation care (assessment and therapy).^25,27,28 Studies in this review highlight that virtual health solutions during the pandemic are preferred by the clinicians, patients, and their caregivers as it promotes patients’ wellbeing, lessens caregiver burden and prevents transmission of the virus.^25,27,28 Literature also reported that the prime benefit of escalating virtual health services irrespective of any restrictions would undoubtedly reduce in-person contact that would minimize the exposure risk of non-infected but susceptible individuals in the waiting area of clinics.²⁹ Moreover, this modality provides healthcare teams an opportunity to observe stroke patients in their own homes which allows for the assessment of fall risk and habitual behaviors which are not always evident during face–face visits.²⁷ Likewise, patients and caregivers were also positive towards this dynamic modality as it was found to be convenient, cost-effective and time saving. This was predominantly the case for older adults and those who cover long distances for appointments, thus decreasing caregiver and patient’s distress.^27,28 The findings are consistent with previous review, proposing virtual methodology serves as an accessible and potentially effective medium for managing chronic patients and assisting their caregivers.^13,14,30 Also, it was witnessed that caregivers preferred remote consultation and were highly satisfied with it as it was very helpful in achieving care goals for stroke survivors.^27,28 Additionally, the present review also captured the physical and psychological distress experienced by the caregivers due to imposition of pandemic measures, resulting in healthcare adversities, i.e. restriction on caregiver’s visits, closure of clinics and rehabilitation services.^7,26 Therefore, caregivers raised their concern of introducing remote services to involve themselves in a plan of care to gain knowledge about disease management, learn rehabilitation therapy skills, communicate with healthcare teams and witness their patient improvement. This aid in mitigating their burden and facilitate smooth patient care.^7,26 Simultaneously, the current review has also pointed out the practical constraints and barriers to uptake virtual health solutions for stroke care including access to technology, network connection, technology literacy and language difficulties.^25,27

The virtual care approach has opened a door of opportunity for stroke patients and their caregivers. Certainly, virtual modality can have a substantial influence on the functioning of stroke patients and strengthen conventional practices. In addition, the integration of virtual practices in daily functions can be enhanced as it can also assist caregivers in the usage of self-administered technologies for caring. Therefore, such technologies are required to be part of the integrated healthcare system, particularly for patients and their caregivers who are impacted by stroke.³¹ Moreover, these innovations are appropriate for the prevention of non-communicable diseases and also guide better care for chronic ailments and high-risk behaviors where there is a need for intervention, support, and monitoring. The health care system in LMICs is undergoing increased demographic transition, and there is a double burden of child and maternal morbidity in addition to a significant non-communicable disease burden.^31–33 Further, this high-risk population caters to a lack of attention, and the health care system has a limited ability to adapt to chronic diseases and is not well-equipped to counter chronic disease burden. For stroke survivors, there is not an isolated in-patient comprehensive rehabilitation facility, hence the majority of care is given by caregivers.^34,35 This review emphasized to stakeholders and policymakers the need to utilize this technology to ease the suffering of people with severe disability.³⁶ Therefore, novel dimensions must be set up in different remote regions for vulnerable populations to address obstacles in optimizing the provision of care as well as explore challenges they face in the current unprecedented time. Furthermore, it is reflected that the perceived sustainability of remote consultation is growing in demand and could be integrated into practice for long-term implications following the COVID-19 pandemic. In this regard, a greater number of studies are required to refine the existing work with evidence-based knowledge and to incorporate it within the existing established framework. Therefore, proper steps are needed to embed this innovative mode of delivery into health care services that can probably cover the barrier of proximity and offer suitable treatment to stroke patients that are in urgent need which ultimately reduces the caregivers’ workload and prevents the chain of transmission.

The virtual approach has opened a door of opportunity for stroke patients and their caregivers. However various innovative dimensions must be set up in different remote regions for vulnerable populations to address obstacles in optimizing provision of care as well as explore challenges they face in the current unprecedented time. Furthermore, it is reflected that perceived sustainability of remote consultation is in growing demand and could be integrated into practice for long term implication following the COVID-19 pandemic. In that regard, a greater number of studies are required to refine the existing work with evidence-based knowledge and to incorporate it within the existing published framework. Therefore, proper steps are needed to embed this innovative mode into the health care services that can probably cover the barrier of proximity and offer suitable treatment to stroke patients that are in urgent need which ultimately reduce the caregivers’ workload and prevent chain of transmission.

Conclusion

The current review provides limited but encouraging data that promotes the efficacy of virtual models in healthcare. It was identified that distant healthcare services are suitable and accessible for the provision of care to the community of stroke caregivers during this pandemic. Moreover, in the present condition of the swiftly changing COVID-19 environment, the healthcare system should consider maintaining a positive caregiver experience as it could affect their patient’s health outcomes. Also, the need for distant stroke care services will surely rise due to restrictions surrounding the COVID-19 pandemic.²⁹ The long-lasting effect of the pandemic on stroke survivors and their caregivers calls for severe efforts on behalf of healthcare organizations to look at the matter in broader lens and to instill novel means of care for the welfare of the stroke patients and their caregivers. Thus, there is dire need for integrating this medium in several regions, mainly in the low- and middle-income countries where healthcare infrastructure is often under-developed, and the COVID-19 impact is likely to be exacerbated. This will strengthen the practice and assist in the development of policy during and after COVID-19 outbreak.

Data availability