A new study examining how people with severe and profound intellectual disabilities resist activities while in care recommends that institutions improve training to help carers better understand non-verbal cues, as well as offer greater flexibility to allow individual preferences to take priority over institutional schedules.
The research, published in the journal Sociology of Health and Illness, investigated how people with limited language ability expressed their wishes and preferences, and how their support workers responded. It was carried out at a residential home and a daycare centre in the UK.
The study, by Dr Clare Nicholson of St Mary's University, Twickenham, and Dr Mick Finlay and Dr Steven Stagg of Anglia Ruskin University (ARU), involved taking notes and filming everyday interactions such as feeding, drinking, art and music activities, and physiotherapy, over the course of a year.
The research found that the service users signaled in very subtle ways, usually non-verbally, when they did not want to do something. For people with severe disabilities, how well their care workers recognize and respond to these subtle behaviors is crucial to their autonomy and empowerment.
Behavior that appeared to signal resistance to activities included pretending to be asleep, dropping tools such as paintbrushes, turning the head or the gaze away from the care worker, pushing objects away, dragging feet along the ground to slow movement in a wheelchair, and making loud vocalizations.
When these behaviors were not responded to by care workers, who instead continued with the activity, the person would sometimes escalate their resistance to behavior involving self-injury, such as thrashing their body around in a wheelchair, striking their own face, and digging their fingernails into their hands.
In addition to encouraging care workers to adopt greater flexibility around which activities take place and when, the authors believe further training using real-life examples, such as those outlined in the study, could help staff better understand some of the common signs of resistance.
Our research shows that people with severe intellectual disabilities can and do make responsible decisions regarding their wellbeing and wishes, and are able to indicate when they want to remove themselves from situations which make them distressed, bored or unhappy."
Dr Mick Finlay, Study Co-Author, Reader in Social Psychology, Anglia Ruskin University (ARU)
"However, for a person to act in a self-determined manner, they need to be able to communicate with others. Communication for people with severe intellectual disabilities is often non-verbal and can be ambiguous, and we found that this can present a challenge for their carers.
"We found that staff often continued to promote or even complete activities on behalf of the people they support, despite signs of resistance. This could be because the carer failed to pick up on the non-verbal cues. Or it could be because of a desire to maximise participation in activities or stick to a schedule.
"Institutional timetables need to be flexible enough to respect the everyday rights and choices of people with severe intellectual disabilities, and support staff need to have the ability to depart from fixed institutional agendas where appropriate, particularly when it would not cause detriment to the people in their care."
Nicholson, C., et al. (2021) Forms of resistance in people with severe and profound intellectual disabilities. Sociology of Health and Illness. doi.org/10.1111/1467-9566.13246.