Research Snapshot: One size does not fit all: virtual care for adults with intellectual and developmental disabilities

What do you need to know?

This study explored how the shift to virtual primary care during the COVID-19 pandemic affected adults with intellectual and developmental disabilities (IDDs).

Researchers found that the increase in virtual care created both challenges and opportunities for adults with IDDs, depending on the patient’s needs and context. For some adults with IDDs, virtual care eliminated the stress of travel and waiting and allowed them to participate from a space where they felt more comfortable. For other patients it meant missing important opportunities to socialize and practice social skills. Virtual care allowed more family members and service providers to attend appointments, though some felt that it put pressure on caregivers to take on a greater role conducting assessments and supporting communication. Some participants appreciated the independence of navigating virtual care without support, and some felt they lacked the skills or comfort to use technology effectively. Other concerns included communication barriers, limited privacy in group-home settings, and the lack of physical exams. For adults with IDDs, a flexible patient-centered approach is needed that includes virtual and in-person primary care options.

What is this research about?

There has been a sharp increase in the delivery of virtual primary care, including care delivered by video and telephone, since the beginning of the COVID-19 pandemic. Individuals with IDDs like autism, Down syndrome, and fetal alcohol spectrum disorders are a patient group with complex healthcare needs. This group already experienced many barriers to care and it is important to understand how the shift to virtual care might affect their ability to access high quality care. Very little research has been conducted on this topic, and therefore the researchers aimed to better understand the accessibility of virtual care for individuals with IDDs.

What did the researchers do?

The researchers conducted semi-structured interviews by telephone or video with 38 individuals across Ontario, including adults with IDDs, family members, support staff, and primary care physicians. Researches asked participants about:

The researchers then analyzed the results to identify themes. Members of each stakeholder group, including self-advocates with IDDs, caregivers and physicians, reviewed and further developed the themes through discussion with the researchers.

What did the researchers find?

The perspectives shared about the accessibility of virtual care varied. Participants identified many benefits to virtual care including that it eliminated travelling to appointments and waiting in waiting rooms. For some adults with IDDs, travelling and waiting in waiting rooms are extremely stressful activities, so eliminating this component improved patient experience and the quality of the health interaction. Some patients who require support with transportation were able to access virtual care more independently, and some patients felt more comfortable participating in care from their own homes. Video-based visits could also allow providers to see patients in their home environments.

For some patients, however, in-person appointments are a fun outing and an important opportunity to practice social skills. Communication and developing rapport could be more challenging when not in person, especially by telephone, due to the absence of body language and facial expressions. Participants suggested that physical exams are particularly important for patients with IDDs who are sometimes less able to describe their symptoms. Privacy was also sometimes a concern for patients living in group settings. Most concerning, telephone interactions were more likely to only include the health care provider and the caregiver. It was often more difficult to engage and communicate with patients with IDDs by telephone and therefore they were excluded from their own health care.

Virtual care also affected the role of the caregiver. An advantage was that virtual care allowed multiple providers and caregivers, including family members who live far away, to participate in the health care visit. However, some family members felt like virtual care required them to take on too much responsibility to perform assessments and support communication between the patient and the healthcare provider.

Technology also posed a barrier for providers, patients and family members who reported varying levels of comfort using video-based platforms. This was a particular challenge for those living in more rural areas with limited access to high-speed internet.

The researchers concluded that having one form of care does not suit all participants. The success or appropriateness of a virtual care encounter depends on a combination of factors:

This study found that though virtual care was not always appropriate, in some cases it improved patients’ ability to access necessary health care. One size does not fit all.

Limitations of the research

While the study made efforts to include a range of participants across the province, the study was conducted in English and researchers didn’t collect data about race or other intersectionalities. It is important for future research to investigate how different identities and backgrounds impact experiences of virtual care for adults with IDDs.

Participants were only included in the study if they had participated in at least one virtual care visit. Adults with IDDs who were unable or unwilling to engage in any virtual care were not represented in the findings.

How can you use this research?

Primary care providers should adopt a patient-centered approach that includes in-person, phone and video options to ensure they meet every patient’s needs. At the system level, this will require a primary care funding model that allows providers to continue delivering virtual care, as well as additional training for patients, caregivers and providers about how to determine the appropriate type of care for each visit and how to effectively engage in virtual care.

To support universal access to video-based care, additional funding is needed to ensure healthcare organizations are able to provide tablets and smartphones to low-income patients. In addition, a common virtual care platform is needed that is easy to use, includes features like captioning and a chat box and can be integrated into electronic medical record systems.

About the researchers

Avra Selick has spent the last 10 years studying how to improve quality of care for people with intellectual and developmental disabilities. She recently finished her PhD at the University of Toronto and is currently a Research Methods Specialist in the Provincial System Support Program at the Centre for Addiction and Mental Health.

Avra Selick1,2,3, Janet Durbin1,3,4, Yani Hamdani2,5, Jennifer Rayner6,7, Yona Lunsky1,2,4

  1. Institute for Health Policy, Management and Evaluation, University of Toronto , Toronto, ON, CA
  2. Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health , Toronto, ON, CA
  3. Provincial System Support Program, Centre for Addiction and Mental Health , Toronto, ON, CA
  4. Department of Psychiatry, University of Toronto , Toronto, ON, CA
  5. Department of Occupational Science & Occupational Therapy, University of Toronto , Toronto, ON, CA
  6. Alliance for Healthier Communities , Toronto, ON, CA
  7. Centre for Studies in Family Medicine, Western University , London, ON, CA

See more related to