The hidden heroes

Perceptions and experiences of supporting people with traumatic brain injury (TBI) and sleep problems in inpatient rehabilitation

This month we are proud to share the results of a study conducted by one of our esteemed colleagues. Riya Gurnani, who is a rehabilitation support worker at Graham Anderson House in Glasgow, has recently completed her undergraduate degree at the University of Glasgow.

As part of her degree Riya carried out a research project investigating the experiences of supporting people with sleep problems after traumatic brain injury.

We are grateful to Riya, for choosing a topic that is close to our hearts, and to all our fellow colleagues who volunteered to take part in her study.

Interviews with five staff members as part of Riya’s research revealed that sleep disturbances are experienced by 30 to 70 percent of people following traumatic brain injury. It was also reported that sleep problems had a negative impact on the physical and mental health of the people we support, which in turn negatively influenced rehabilitation outcomes.

Participants also observed how a poor night’s sleep could negatively affect cognitive functioning, and lead to lethargy and irritability and how this made behaviours that challenge more likely to occur. Such behaviours were, at times, aggression towards staff. A thematic analysis of the qualitative data revealed three themes.

Hindrance to duty of care and rehabilitation

All healthcare staff have a “duty of care”, which refers to the legal responsibility to provide care for individuals in their service, and to keep them safe. Staff taking part in the study reported that the sleep disturbances experienced by people with TBI would sometimes negatively affect staff’s ability to provide an adequate standard of care, as it could lead to people declining personal care, meals, and medication.

Staff felt that this left them torn and stuck between fulfilling their duty in looking after the wellbeing of the people supported and respecting their wishes.

It can get very difficult to cope: sources of stress and burnout

Staff experienced more verbal and physical abuse from people they supported who had a poor night’s sleep. Poor sleep can make people act more impulsively and become less able to regulate their emotions. This potentially puts staff in a more vulnerable position. Exposure to incidents of aggression elicited a range of emotion in staff, from powerlessness, despondence, to feeling unsafe, which in turn was reported to contribute to burnout.

Organisational barriers

In the interviews staff reported that when people they supported had not slept well, they were subsequently less likely to engage with their rehabilitation routines and required more prompting. This in turn sometimes created a tension, as staff felt that they had to reconcile their actions with their conscience by complying with regulatory and safety rules which could nevertheless contribute to worsening sleep disruptions (e. g. 15-minute checks).

Furthermore, these challenges were exacerbated by the staff shortages that have been experienced in the sector, leading to burnout. The increased levels of aggression, resulting from sleep disturbances, and staff burnout, fuelled one another in a vicious cycle difficult to untangle (Berlanda et al., 2019).

The findings of this study are consistent with existing evidence base suggesting that sleep disturbances exacerbate behaviours that challenge in people with TBI. The study also highlights how important supporting the wellbeing of frontline staff in these challenging circumstances is, as well as the need to target sleep disruptions to improve the experiences of health care staff and of the people they support.

Caring for the carers is one of the most important cornerstones for providing the best care.

Please contact research@brainkind.org for more information, or to obtain a copy of Riya Gurnani’s dissertation.