Caring for the Most Vulnerable

“While everyone lost freedoms during the pandemic, and certain things that we take for granted, I don’t think we lost as much as the most vulnerable in the community,” says Nathan Wilson, an associate professor of nursing at Western Sydney University.

Wilson is an expert on the intersection between intellectual disability, social inclusion, and the nursing workforce. He has long been interested in research that can improve the lives of people living with disabilities. “People with intellectual and developmental disabilities are some of the most marginalised Australians, and suffer more social exclusion than any other group,” he adds. Just under 3% of Australia’s population have an intellectual or developmental disability, and this is similar across all Western countries.

So when SARS-CoV-2 struck, and brought with it stay-at-home restrictions, visitor restrictions in health and aged care facilities, staffing shortages and the need for everyone to wear personal protective equipment, Wilson was immediately concerned about how these measures would affect people with intellectual disabilities.

“In many cases they’ve got very few friends, very few meaningful relationships beyond mum, dad, brother, or sister that might come and visit,” he says. When stay-at-home restrictions were declared, they lost that vital connection to family, they lost the routines of excursions and activities, and there was nothing to take their place.

To learn more about the effect of pandemic restrictions on this vulnerable group, Wilson contributed to an international study led by Melissa Desroches, an expert in community health nursing from the University of Massachusetts, Dartmouth in the USA. Collaborators included nurse disability researchers from the USA, Canada, the UK, Ireland, New Zealand, and Australia.

“We have a segment of people with developmental disabilities that don’t really have family and were institutionalised” Desroches says. “In many cases, their nurses and carers are the people who know them best and can speak to their experiences.”

The study, which was published in the Journal of Policy and Practice in Intellectual Disabilities, surveyed 369 nurses from across North America, Europe, and Australasia about the challenges they faced caring for people with intellectual and developmental disabilities, such as Down syndrome, during the pandemic, how they attempted to overcome those challenges, and the support they received.

A key finding from the study was how people with intellectual and developmental disabilities experienced a major loss of opportunities for activity and socialisation during lockdowns. “Self-determination for this group of people is a challenge, and a lot of time and effort goes into enhancing their self-determination,” Wilson says. But stay-at-home restrictions effectively brought an end to that, and nurses surveyed ranked the challenge of ensuring appropriate day programming or educational services as the greatest issue they faced, closely followed by barriers to enabling socialisation with family and friends.

“Something as simple as a daily visit to a play area for a swing, or a walk through a park, can make the world of difference when it comes to managing the well-being of someone with intellectual and developmental disabilities,” says Wilson. Yet that choice was largely removed without consideration for the consequences in this group.

This unilateral decision-making wasn’t just a failing of the Australian system: “For people with developmental disabilities that decision was made for them through state systems and bureaucracy, regardless of country,” adds Desroches.

One of the effects of this loss of agency was an increase in mental health issues. Nurses in the survey observed that there was also an increase in pharmacological treatments, such as psychotropic medications, for mental health in those they cared for.

Nurses also said that pandemic public health guidelines for those working with people with intellectual and developmental disabilities were complex, conflicting and often unclear. They also sometimes failed to take into account the unique needs of this group, and nurses faced the additional challenge of trying to communicate public health guidance to their patients.

Wilson argues that not enough attention or effort was put into engaging with people with intellectual and development disabilities and their carers, to enable them to have more say and participation in decision-making around their wellbeing. “It’s about creating some way of acknowledging them as people with rights, that have a right to meaningful relationships, as opposed to viewing them as ‘we have to protect them at all costs, and it’s going to be good for them’,” he says.

To that end, Wilson, Desroches and other researchers are working towards building an international collaboration of researchers in the disability nursing space. Their hope is to produce more research that can inform a more tailored, targeted and dignified approach  to  public health measures for people with intellectual and development disabilities.

“As we plan for future public health crises, whatever they may be, we know that people with developmental disabilities have been disproportionately impacted,” Desroches says. “We really need them and their carers, whether family members, nurses, or direct support professionals, to be involved in that planning as well.”