Background

In 2020 The Wellcome Trust commissioned a team led by Dr Amy M Russell of the the Leeds Institute of Health Sciences to address health research participation for people with learning disabilities.

People with a learning disability are often excluded unnecessarily from research by exclusion criteria that are built into study design (Feldman et al. 2014). Exclusion can be both passive (through study requirements, e.g. use of long questionnaires) or active (cognitive impairment as an exclusion category) (Brooker et al. 2015; Berghs et al. 2016; McDonald et al. 2009). A lack of capacity is an often cited exclusion criterion without study protocols giving further details of the processes in place to assess capacity or support individuals to make informed decisions (Feldman et al. 2014).

Research with people with a learning disability as the primary focus is uncommon (Feldman et al. 2014). One rationale is that people with learning disabilities are ‘hard to recruit’ -a loaded term that requires interrogation. It may equally be that to gain ethical approval, studies must conform to certain designs that do not support the inclusion of people with a learning disability.

The recruitment of people with a learning disability also has to take account of the individual capabilities of each person. Levels of cognitive functioning do not directly predict differences in communication or interpersonal functioning (Fisher 2003). A person’s exposure to ideas of, or participation in, research will significantly affect their ability to make decisions but is largely a result of their lifestyle and networks rather than their cognitive ability (Fisher 2003). Taking a critical intersectional lens this study will examine concepts of capacity and vulnerability -acknowledging they are shaped by understandings of class, gender, age, race, other forms of disability and social networks.