Category: Clinical Sciences/Health Conditions
Previous research has demonstrated that there is a clear need for a Health Maintenance Tool, which can support people with SCI with different levels of health literacy and self-management capacity, particularly after discharge into the community. The tool should also support people with SCI to manage their five key areas related to bladder, bowel, skin, autonomic dysreflexia and pain, as well as provide strategies to their caregivers and primary health care providers.
A mixed methods design including rapid reviews, interviews, focus-group discussions and a Delphi approach for building consensus (for bladder, bowel and skin) was undertaken. The study involved consumer group, primary care group (GPs), as well as expert group (SCI and other relevant experts). Interviews (involving consumers and GPs) and focus group discussions (involving consumers) data were analysed using thematic analysis approach using NVivo software. Delphi surveys (involving expert group) data were analysed using a consensus process and consensus were built on the management recommendations, red flags condition, referrals and clinical pathways.
Overall, 19 people with SCI, four GPs and 65 discipline and SCI-specific specialists participated in the study. The 6 key themes derived from the qualitative analysis of the interviews and focus group discussion were (1) Where do I start? (2) Best counsel? (3) Sharing knowledge (4) Timely access for help (5) Shared decisions and (7) Promoting self-management. A total of 42, 36 and 61 statements were written for bladder, bowel and skin, respectively. Two rounds of the Delphi surveys were employed to achieve complete agreement.
The promotion and maintenance of optimal health and quality of life over the life span of an individual with SCI involves ongoing surveillance and prevention of secondary complications. This tool aids in supporting the self-management, provides essential knowledge and self-management strategies. A digitalised version of the tool is also being proposed.
Mohit Arora– Postdoctoral Research Fellow, The University of Sydney
Melissa McCormick– Rural Spinal Cord Injury Service Manager, Royal Rehab
Dimity O'Leary– Spinal Outreach Service Manager, Royal Rehab
Selina Rowe– GM Community Services, Director of Allied Health & Clinical Info, Royal Rehab
Anne Sinnott Jerram– PhD Candidate, The University of Sydney
Gerard Weber– SCI Unit Director, Royal Rehab
James Middleton– Professor, John Walsh Centre for Rehabilitation Centre, The University of Sydney