Adaptations to research within the intellectual disability population during the COVID-19 pandemic: Lessons learned from the CAREVIS study

Abstract

The COVID-19 pandemic resulted in changes in all areas of clinical practice, including clinical research and within the intellectual disability population. While there have been some benefits from this rapid adoption of change, those involved in research have had to overcome a number of additional challenges. These adaptive changes, which have included the use of technology, closure of social spaces, working with specific groups who are more vulnerable to COVID-19, and mask use impairing communication, have had both positive and negative impacts on research. As the pandemic and related restrictions evolve, it is important to examine the changes that have occurred. In the future, the adoption of a hybrid model in research is likely to be a common approach, establishing a balance between technology and in-person interaction.

Introduction

The first case of the disease (known as COVID-19) caused by severe acute respiratory syndrome-2 coronavirus 2 (SARS-CoV-2) was reported in Wuhan, in China in December 2019 (Zheng, 2020). Subsequently, it has spread throughout the globe (WHO, 2020), resulting in the introduction of numerous regulations, from country-wide lockdowns (Sylvers and Legorano, 2020) to social distancing regulations (UK Government, 2020). To date 22,241,877 (UK Government, 2022a) cases and 210,457 deaths (UK Government, 2022a) have been reported in the UK. Those with intellectual disabilities have been shown to be particularly affected, with increased risk of infection and mortality, especially in those with Down’s syndrome (Williamson et al, 2021). Hospital admission and death rates with COVID-19 in the intellectual disability population were 5 times and 8 times higher respectively when compared to the general population (Courtenay and Cooper, 2021).

As well as affecting everyday lives, it has affected research processes on a global scale during this period, putting significant pressure on research at an international level (Park et al, 2021). Research in many areas, including intellectual disabilities, was paused in order to reduce non-essential contact (Sathian et al, 2020), to allow resources to be focussed on COVID-19 related research (Sathian et al, 2020) and to allow safe clinical care to continue through redeployment (Veerapen and Mckeown, 2021). As the long-term nature of the pandemic became apparent, it was clear that researchers would have to find a way to safely conduct research. Those with intellectual difficulties are often an under-served group in research (Crook et al, 2016; National Institute for Health Research, 2020) even without the major limitations imposed during the pandemic. This can be for a myriad of reasons, including capacity to consent, access to the population, communication impairments, and facilitating research involvement through reasonable adjustments (Crook et al, 2016; National Institute for Health Research, 2020). Therefore, significant work had to be put into ensuring that this population could continue to be involved in research during COVID-19.

As psychiatrists, clinicians and researchers, it is our job to ensure that we continue to care well for those with intellectual disabilities, and we continue to conduct research which can guide us on the best ways to do this. It is important to learn from the different ways in which research has been able to continue during this pandemic, and to identify how this can shape future practice.

Adoption of technology

A substantial change to research during the COVID-19 pandemic has been the adoption of digital technology to facilitate patient recruitment, meetings with colleagues, and exchange of information. Due to the rapid increase in COVID-19 cases and subsequent enforcement of social distancing, an accelerated shift has been required towards digital technology, with little indication of the way this might transform the future of research practice in this population.

Virtual appointments have become a lifeline for research during the pandemic, allowing recruitment to continue in cases where it was not deemed safe to meet face to face (Loucks et al, 2021), especially prior to the national vaccination programme. This was particularly important in the intellectual disability population, who themselves are more vulnerable to COVID-19 (Williamson et al, 2021) and may have not had an opportunity to participate if not for technology. The ability to recruit in the intellectual disability population using video or telephone contact has improved access for these people, with more efficient use of time (as no travel time or room booking is required), enabling carers and/or staff to support patients more easily and the meetings themselves possibly inducing less anxiety.

Recruiting through virtual means does come with its own set of challenges, however, such as concerns over widening the already present digital divide and blocking access to hard-to-reach groups (Wijesooriya et al, 2020). While the Office of Communications (Ofcom) reports nationwide internet and mobile access to now exceed 94% (Ofcom 2021), the figures for those with an intellectual disability are likely to be much lower. There is concern over whether those with an intellectual disability would have the access, understanding and ability to use digital technology. Personal use of the internet is less likely for people with an intellectual disability, and they are less likely to own a computer or smartphone (Ofcom 2019). The limited data that exists does suggest some promising outcomes with telepsychiatry in this population (Madhavan, 2019). Communication can present a barrier in the intellectual disability population and a virtual medium may hinder this further (Valdez et al, 2021).

Meetings with colleagues have likewise been largely conducted through virtual means, with its own set of benefits and difficulties. Virtual meetings have prompted more regular contact with colleagues and improved access to those involved (Adhdam et al, 2019). It has led to virtual training sessions and has allowed vulnerable or shielding staff to participate. Modern technology has facilitated the exchange of information virtually, increasing efficiency and access to documents. Difficulties are likely to arise with staff meeting on a purely virtual basis, such as missing subtle communication cues, challenges with planning and co-ordination and poorer team cohesion (Acai et al, 2018). This in turn may lead to miscommunication over roles, shared objectives and people’s views.

Closure of social spaces

During the pandemic, many support services were required to close, including day centres, and a number of community activities stopped (Flynn et al, 2021). While this loss of social support was often difficult for those with an intellectual disability on an individual basis, it also meant that researchers were not able to engage with these patients in a group setting. Previously, these settings would have been a convenient site for focus groups, for example, to hear the opinions and experiences of those with intellectual disabilities.

Researchers and clinicians were also affected by the closure of these social spaces. Enforced working from home, and lack of time spent in an office, reduced the number of casual social interactions and also enforced virtual practice for researchers who were, in almost all cases, not permitted to enter people’s homes, especially during the early waves of the pandemic where restrictions were in place for all non-essential activity (Powell, 2022). This in turn reduced opportunities for informal discussions and brainstorming, which may have reduced opportunities for collaboration and benefit from colleagues’ experience, although this is difficult to evidence quantitively (Jackman et al, 2022). Conversely, ensuring people were able to work from home with minimal social distractions resulted in greater efficiency (Bloom et al, 2015).

Involving clinically vulnerable populations

Use of technology for virtual recruitment and staff meetings has led to increased accessibility for both vulnerable staff and patients. The intellectual disability population has historically been excluded from research due to ethical consideration and barriers in communication and environment. However, research is considered crucial in this group (Crook et al, 2016). During the pandemic, it was discovered that those with an intellectual disability had a significantly increased risk of admission to hospital and death from COVID-19 (Williamson et al, 2021). Use of technology has allowed those with an intellectual disability, who are already known to be an under-served group, to participate in research in a safe manner. It has also enabled staff, who present with their own vulnerability and shielding requirements, to continue to engage in research.

Mask use

While at the start of the pandemic, the evidence on mask use was unclear and recommendations varied, data collected over the last two years has shown the protection that mask wearing confers (Li et al, 2021). This has been reflected in national guidelines - masks have been advised in face-to-face contact in clinical settings (UK government, 2022b). Mask wearing can be more difficult in the intellectual disability population, partly due to sensory issues with the mask itself and partly due to communication difficulties caused by the mask. This can cause issues with face-to-face consultations within research, particularly where good explanations of procedures or interventions are needed, or consent needs to be gained. The easiest way around this has been ensuring conversations can happen in environments where mask wearing is not required, such as in a digital consultation, or in outdoor spaces.

Lessons Learned from our Research: Beyond Words: Co-creation And evaluation of a visual REsource to support COVID-19 Vaccine uptake in people with Intellectual disabilitieS (CAREVIS) study

To further demonstrate the shift in research practice, we will reflect on our experience of working on the CAREVIS research study during the pandemic era. Our research was first prompted after concern that the intellectual disability population might present with underlying vulnerability and miss out on the vaccine, due to access issues, lack of understanding and a lack of advocacy. We believed that a wordless picture book explaining the process of having a COVID-19 vaccination may help improve understanding and overall engagement for those with an intellectual disability. A mixed methods study was devised to analyse views on the resource, involving people with an intellectual disability, carers and health professionals. Vaccine uptake data was collected for the neighbouring regions, along with circulation of a national survey via intellectual disability networks for health professionals to quantify the impact of the picture book resource on vaccine uptake in their local areas.

We designed the research to be as inclusive as possible, including online interviews, online surveys and telephone/virtual recruitment. The research design allowed those with clinical vulnerabilities to continue to participate in research in a safe manner. In order to provide practical and emotional support, those with intellectual disabilities were offered a carer to chaperone them during recruitment and their interview. Many took up this offer, with anxiety related to meeting new people and the digital format. This demonstrated to us the importance of having a source of support, other than the research team, for those with intellectual disabilities when undergoing the research process, especially if this is remote.

The practicalities of digital work did prove difficult, with issues such as unstable internet connections and audio/visual delays. Exchange of information with people with intellectual disabilities in a digital fashion was initially a steep learning curve. Some did not have access to an email account and sending information via post brought significant delays. Overall, both recruitment and interviews took longer than anticipated. Due to the delay in committees meeting, achieving local and ethical approvals took longer than expected.

The digital interface did prove challenging for many of those we interviewed who had intellectual disabilities. Masks posed a further communication barrier in a group that already struggles with this. Finally, the virtual nature required the person to be able to understand and use technology, with the support of others, increasing the threshold for access into the study. We attempted to mitigate this through the use of a chaperone and would recommend this as future strategy to help improve access for those with an intellectual disability.

The remote nature of the study brought advantages, such as more frequent and more rapid communication within the research team. Research team meetings were held virtually on a weekly basis, which brought many positives to the project, such as increased efficiency in relation to time and location, allowing more frequent meetings with more colleagues able to attend. Training could be carried out in a digital fashion for staff, which improved access and efficiency, and allowed shielding staff to participate. We did miss out on informal discussions with colleagues, which can prove valuable. Overall, however, there was improved efficiency of time, location and written communication through document sharing.

Social distancing measures posed significant challenges in relation to our Patient Public Involvement (PPI). Initially we had robust virtual and telephone PPI. As social distancing measures were eased, this culminated in an in-person event at the end of the project (Purple All Stars et al, 2022), which allowed those involved to join in-person to discuss the project.

Recommendations

Through this process, we have faced many complexities and adaptations required to improve the accessibility of research for those with an intellectual disability. Social distancing measures have begun to ease, but it is unlikely that research will return to pre COVID-19 practices.

We would recommend for an offer to be made of an in-person or digital consultation, based on personal preference and if it is safe to do so (bearing in mind the levels of COVID-19 and individual clinical vulnerabilities). Some may find a digital consultation anxiety-provoking and difficult to access due to technology, while others may prefer it due to practicalities, such as time commitments and location. Where masks are required to be worn in-person, a virtual consultation may be considered to improve communication by allowing faces to be seen clearly.

Ensuring support is provided to enable people to access required technology is also essential. This could be via initial teaching sessions, or through offering a carer or chaperone to be present in order to provide emotional support and practical support around access to digital technology.

We would also recommend research teams consider utilising the variety of virtual technologies that are available. This might include virtual meetings or training, which can enhance efficiency, or online systems which allow concurrent editing of documents.

Conclusions

The COVID-19 pandemic has resulted in some of the greatest challenges clinicians have had to face in recent history, including those who are working in research. Despite the difficulties, research has continued and many obstacles have been overcome, particularly with the adoption of various technologies.

It is likely that a hybrid model will become common, with remote activities sitting next to essential in-person activities. Digital working has been welcomed with enthusiasm by both people with intellectual disabilities and clinicians (Dave et al, 2021). However, awareness of a digital divide is key, and care must be taken to ensure that the gap does not widen, excluding those who find technology hard to access from future research. This is particularly important in those with intellectual disabilities, who are already an under-served group, commonly missed out of research.