SEED PROJECT: Sleep disturbances following spinal cord injury: Understanding help-seeking behaviour and co-designing a sleep management resource

About the Project

About

Sleep is an essential part of life for everyone. However, people with spinal cord injuries (SCI) often report finding sleep difficult. After SCI, people may have trouble falling asleep, wake up frequently during the night, have disruptive muscle spasms, and experience problems breathing during sleep. These sleep disturbances affect the emotional wellbeing and quality of life of people with SCI, who can struggle to participate in employment and social activities due to a lack of energy. Unfortunately, sleep disturbances after SCI are often left untreated and, as a result, sleep disturbances can persist in disrupting people’s lives unnecessarily. In this project, the research team will seek to understand peoples’ experiences of sleep disturbances after SCI. We also want to understand the support people with SCI have received relating to their sleep disturbances or, alternatively, the reasons they have not looked for or received support. Following this, researchers, clinicians, and people with SCI will work together to identify how SCI-specific needs related to sleep disturbances can be addressed and preferences for doing so. Collecting this knowledge, as well as practical strategies to support people with SCI to address their sleep disturbances, will lead to the development of a sleep management resource.

Aim and objective

Aims:

1. Understand people’s lived experiences of sleep disturbance after SCI and their current help-seeking behaviours (e.g., previous support accessed and/or reasons for not accessing support); 
2. Identify optimal approaches to managing sleep disturbances from the perspectives of people with SCI and clinicians (i.e., how best to meet sleep support needs); and 
3. Co-design sleep management resources that support people with SCI and clinicians to better understand and address sleep disturbances after SCI. 

Outcome:

The main outcome of this project is the development of a co-designed sleep management resource specific to the needs and preferences of people with SCI. However, this project will also generate knowledge on the help-seeking behaviour of people with SCI experiencing sleep disturbances and their preferred approaches for management after SCI. This will improve awareness of strategies that service providers could implement into practice to support people with SCI experiencing sleep disturbances. 

Expected Impact

It is expected that this project will benefit multiple stakeholders, including people with SCI who are experiencing sleep disturbances, and the clinicians and community organisations supporting them. The research will identify the sleep management needs and preferences of people with SCI highlighting where additional support can be provided and what resources need to be developed. Based on these recommendations, novel sleep management resources will be developed. It is also expected that the research will garner insights into the help-seeking behaviours of people with SCI experiencing sleep disturbances. This information will lead to an improved understanding of what enables people with SCI to seek support for their sleep management needs. This knowledge can then be used to inform clinicians and community organisations on practical strategies that can be incorporated into their practice to support people with SCI experiencing sleep disturbances. The inclusion of clinicians and community organisations throughout the study will ensure that the suggested strategies are practical for inclusion in real world practice. It is anticipated that project outputs will lead to improved awareness and understanding of sleep disturbances following SCI and the impact of these on health, function, and quality of life.

People/organisations involved

Hopkins Centre

• Dr Emily Bray (Chief Investigator)
• Dr Jessie Mitchell
• Prof Tamara Ownsworth

QSCIS 

• A/Prof Melissa Kendall
• Dr Delena Amsters
• Jennifer Campbell
• Kathryn Marshall
• Prof Timothy Geraghty

Spinal Life Australia

• Ross Duncan
• Frances Porter

Institute for Breathing and Sleep,  Austin Health

• Dr Marnie Graco

Consumer researcher

• Sarah-Jane Staszak

Project status and timeframe

This 12-month project commenced in July 2024 and is currently awaiting ethics and governance approvals. Recruitment and data collection is expected to begin in November 2024 with resource development starting in early 2025.