Education and prevention programs for individuals with SCI have evolved over the past few years, with growing recognition that to have a lasting impact on lifelong pressure management and skin care, the approaches to education and prevention programs must be multifactorial with consideration for situational challenges and individuality of needs (Tung et a. 2015). Education programs provide knowledge and emphasize behaviours intended to reduce the risk of pressure injury occurrence (Bogie 1995; Rodriguez & Garber 1994; Schubart et al. 2008). Although there is much diversity about specific educational programming conducted across various settings, typical approaches in inpatient rehabilitation include structured programs, often delivered in group lecture formats (question and answer), augmented by unstructured, informal “just-in-time” education delivery and content driven educational materials such as pamphlets, information sheets, websites or binders (Lawes et al. 1985; Wolfe et al. 2012, Tung et al. 2015).Typically this education is delivered while the individual is an inpatient at a time when they and their family are adjusting to a diagnosis of SCI and are likely suffering from information overload. Under these circumstances, an individuals’ ability to appreciate the knowledge and behaviours necessary to prevent pressure injuries over their lifetime is likely compromised (Garber et al.1996; Potter et al. 2004; Schubart et al. 2008). With shorter lengths of stay, there is less time to deliver prevention education and fewer opportunities for reinforcement of acquired knowledge. This means that individuals with SCI are being discharged with potentially less information on pressure injury prevention (Garber et al.1996). The focus has shifted from solely inpatient education to ongoing management programs for people in the community living with a SCI (Tung et al. 2015). There continues to be limited data on the specific education needs required by individuals with SCI at risk for pressure injury formation (May et al. 2006; Schubart et al. 2008). Systematic reviews by Cogan et al. (2017) and Baron et al. (2018) also found variability in programs and supports across studies reviewed. Cogan et al. found non-significant outcomes between control and intervention groups in the 5 studies that met their inclusion criteria. In Baron et al.’s review of 15 studies, only 1 was identified as demonstrating significant improvement in skin status; this study examined structured versus standard education, further supporting the need to individualize programs for short and long term pressure management needs.
Summarized Level 5 Evidence Studies:
In a secondary analysis of a national cross-sectional survey within the Swiss Spinal Cord Injury Cohort Study, Hug et al. (2018) found that General Self-Efficacy scale results were not association with the data gathered from the 5 PU preventative behaviour items of the Spinal Cord Injury Lifestyle scale. The participants in this survey were community based; positive associations were noted with skin-care prevention items and receiving formal or informal support at home regarding skin-care. The authors suggest that availability of home support may be a factor that can be modified to affect the skin-care preventative behaviour. This is consistent with the suggestions by Guihan et al. (2014). The authors also suggest that the use of a general self-efficacy scale were too general to capture the specific needs and circumstances affecting preventative behaviour in this population. In a secondary analysis of a subset of participants from a larger ethnographic study, Fogelberg et al. (2016) explored the role habits played pre and post injury in relation to pressure injury development. The findings suggest that habits established before injury supported development of pressure management habits in some but not in all participants. However, the study findings do suggest that the integration of pressure management strategies into life habits is important, and that the provision of education related to the pressure risks needs to be expanded to assisting the person to developing new life habits related to pressure management.
Overall, most investigations reviewed above have demonstrated that specific educational programming can be beneficial for pressure injury prevention in persons with SCI, This aligns with results reported by Gelis et al. (2012) in a systematic review of therapeutic patient education directed toward persons at chronic risk of pressure injury formation, with 5 of 6 studies in this review involving persons with SCI. These authors noted a low level of evidence (Level 2 resulting in Grade B recommendations), acknowledging the relative immaturity of the literature in this area. Additionally, Gelis et al. (2012) noted limitations associated with biomedical thinking resulting in clinicians focusing on “educating” their patients (i.e., dissemination strategies) rather than adopting more behavioural approaches (Jones et al. 2003) or those that are grounded in adult learning principles as noted by May et al. (2006). The scoping review conducted by Tung et al. (2015), who identified that approaches for pressure management found in the literature were moderately successful at educating but found that the effect of these prevention strategies on incidence is not well studied.
Although the various and specific educational experiences imparted over an inpatient rehabilitation stay are difficult to characterize, two studies have reported knowledge gains in pressure injury prevention methods associated with general inpatient rehabilitation programming as assessed at admission versus discharge, as well as at a later follow-up (May et al. 2006; Thietje et al. 2011). Thietje et al. (2011) did not specify particular aspects of the educational programming provided, however, they noted that significant knowledge gains were achieved by discharge and maintained at 30 months with patients identifying rehabilitation physicians, physiotherapists and nurses as the most important knowledge resources as well as in-hospital special courses. May et al. (2006) reported similar findings in knowledge gain at discharge and retention at 6 months post discharge as assessed by a customized multiple choice questionnaire developed by a clinical nurse educators and former patients. Notably, May et al. (2006) did characterize a main component of the educational experience provided to patients as involving an 8 week lecture series with classes held twice a week with content including pressure sore prevention techniques along with many other topics relevant to persons with SCI. Skin care, along with bladder and bowel care, was consistently reported by patients as the most important issue in relation to a variety of topics usually deemed relevant within SCI rehabilitation (May et al. 2006). Perhaps the most significant finding associated with this study was that problem-solving ability, as assessed using a qualitative Life Situation Scenario approach, was only marginally improved from admission to discharge and many patients continued to demonstrate poor problem-solving ability (i.e., applying knowledge to behavioural actions) at discharge. May et al. (2006) noted that the lecture series approach was likely not effective in this regard as it did not incorporate adult learning strategies (e.g., focus on perceived learning needs, readiness to learn, active learning).
Other studies have tested the effectiveness of more specific educational programming. For example, Brace and Schubart (2010) and Schubart (2012) have conducted pre-post, pilot studies examining the effectiveness of an interactive eLearning program designed to prevent pressure injuries in persons with SCI as applied during inpatient rehabilitation (n=18) or following discharge to home (n=14), respectively. In each case, knowledge as assessed by performance on a customized test about this topic was significantly improved immediately after completing the online module. In addition, Schubart (2012) reported that participants rated aspects of the program’s ease of use and utility very high as well as providing positive self-reports on perceived knowledge gain and improved self-efficacy about pressure injury prevention.
In an RCT conducted by Garber et al. (2002), inpatients awaiting pressure injury surgery were randomly assigned to an intervention group (n=20) that received four 1-hour sessions of enhanced education on the prevention and management of pressure injuries. Information presented at the sessions included education regarding preventative strategies such as skin inspection, weight shifts/turns, nutrition and pressure redistribution surfaces for the bed and wheelchair, as well as pressure injury etiology. The control group (n=21) received standard education regarding preventative practices. After discharge, the groups were followed for two years or until recurrence of pelvic pressure injury. Improvement on the pressure injury knowledge test was noted in both groups upon discharge from hospital; however, it was significantly different between the groups (p<0.03), with those in the intervention group gaining more knowledge about preventing pressure injuries. No significant differences were noted on the multidimensional Health Locus of Control Scale and the Health Beliefs Questionnaire between the two groups at discharge. Two years post treatment, it was noted that both groups had retained most of the knowledge they had gained during their hospitalization, but the level of knowledge retained by the control group was below that of the treatment group: 60.8% versus 68% on the pressure injury knowledge test.
In a parallel study, Rintala et al. (2008) randomized similar subjects into three groups: Group 1 (N=20) had received enhanced education sessions. Group 1 was followed through structured monthly telephone contact where they were questioned regarding skin status, pressure injury preventative behaviors and reminded of behaviors they were not using. Group 2 (N=11) were contacted monthly by mail to assess skin status only and group 3 (n=10) were contacted every three months by mail to assess skin status. If those in groups 2 and 3 had not responded in two weeks, they were contacted by telephone. Group 1 had a significantly longer time before recurrence of pressure injuries (19.6 months, p=0.002) while no significant difference was reported between group 2 or 3. For persons who had not had previous pressure injury surgery, the enhanced education and structured follow-ups extended their ulcer free time. As well, less people in group 1 had a recurrence of a pressure injury (33.3%) versus group 2 (60%) and group 3 (90%). In summary, those individuals who received an enhanced education and structured follow-up, showed more improvement on the pressure injury knowledge test at discharge, retained more of this knowledge 2 years post intervention and had fewer recurrences of pressure injuries. For those individuals who went on to have a recurrence, time to recurrence was much longer.
To the point in time of this last study, it was the only investigation described in this section to include an assessment of health status as well as to include behavioural aspects to their intervention After this time point, research in this area in general, was strengthened considerably by adopting more fulsome outcome measurement approaches to evaluate the effectiveness of interventions (i.e., assessing behavior change directly in addition to its impact on health) as well as by incorporating theory-based behavior change strategies as parts of an intervention.
Early pressure injury prevention was examined by Guihan et al. 2014 through the lens of a Chronic Care Model, focusing on self-management through engagement education, improving motivation and skill building. This multisite, single blind RCT study compared self-management and motivational interviewing interventions to an education only control group over a 6 month period post discharge from 6 VA centres with participants who had been admitted due to chronic and/or severe pressure injuries. This study found that at 3 and 6 months test times that there were differences between the two groups in relation to skin care behaviours, and skin status but no comparisons were statistically significant. They also found that less than one third of the intervention group participated fully and 15% of the control group. The authors question whether these interventions are effective for people with chronic and/or severe pressure injuries, identifying the factors related to comorbidities as high and potentially confounding as they did not address them. The authors also report their study had less than 50% power instead of the anticipated 80% due to challenges with recruiting amongst this specific subset of the SCI population, despite recruiting from 6 centres.
Kim and Cho (2017) based their study on Bandura’s social cognitive theory of self-efficacy. The program focused on promoting self-care behaviours, self- care knowledge, and self-efficacy as a means to prevent pressure injuries. They randomly allotted 3 of the 6 participating hospital into the control or experimental groups. The control group received an education booklet. Their 8 week program included many of the strategies/approaches used in the above studies, combining education using booklets, computer slides, videos, demonstration/observation and practice of skills, computer demonstration, and counselling via phone and face to face. While both groups demonstrated improvements in self-care knowledge, self-care behaviours and self-efficacy, the experimental group demonstrated a significantly greater improvement in these areas, suggesting the mixed methods used was beneficial in improving pressure injury prevention knowledge. However, the effect of this approach on pressure injury incidence longer term was not explored in this study.
Cobb et al. (2014) concluded from their retrospective pre-post study of a Pressure injury Prevention Initiative (PUPI) that best practices for assessment and documentation improved but there were no significant changes in pressure injury incidence or in the severity of ulcers if they did occur, over the 20 month study timeframe. However, Cobb cites other similar studies where improvements in pressure injury incidence were found and questioned whether the methodology used in this study was robust enough.
Jones et al. (2003) examined the effectiveness of several behavioural strategies (i.e., rewards, counselling and creation of an action plan) in four small pilot studies that examined pressure injury status and health care utilization. Results showed great variability in the average Pressure injury Scale for Healing (PUSH) scores with all behaviour strategies. For some participants PUSH scores were lower by 10.5 points from baseline; no hospitalizations were required and costs declined from $6,263.00 (US) to $235.00 (US). Of these participants only a few maintained the lower PUSH scores post-intervention. Although this was a very small study, results suggest that for some people when behavioural contingencies were introduced, positive behaviours resulted and were sustained. More research is needed to determine if behavioural contingencies (i.e., rewards) and other behavioural strategies offer some benefit for some people in pressure injury prevention post SCI.
Ghaisas et al. (2015) completed a secondary analysis of data collected from the intervention group of a randomized control study in which participants’ received the Pressure injury Prevention Program (PUPP); this program is based on the findings from Lifestyle Redesign for Pressure injury Prevention in Spinal Cord Injury study. This secondary analysis focused on the relationship between lifestyle and behaviour changes implemented during the intervention and the development/progression of pressure injuries. The study identified four patterns in the relationship between lifestyle and behaviour changes and pressure injury change. There was a larger proportion of participants who had positive lifestyle or behaviour changes that related to an improvement in pressure injury status (n=19/25).
The 2013 Canadian Best Practice Guideline for Prevention and Management of Pressure injuries in People with SCI provided a Level IV recommendation (based on studies of self-management approaches used within various chronic diseases) to promote self-management for people with SCI by helping them to learn, consistently apply, and incorporate into their daily lives the effective and appropriate pressure injury prevention strategies.
There is level 1b evidence (from two randomized controlled trials studies; Rintala et al. 2008; Garber et al. 2002); and level 2 evidence (from 1 lower RCT from Kim & Cho, 2017) and level 4 evidence (from four pre-post studies; May et al. 2006; Brace & Schubart 2010; Schubart et al. 2012; Jones et al. 2003 ) that providing enhanced pressure injury prevention education, including behaviour contingencies and strategies, is effective at helping individuals with SCI gain and retain this knowledge, reduce pressure injury severity and decreased health care costs.
There is level 1b evidence (from one randomized control trial; Guihan et al. 2014) suggesting that for the SCI population with chronic and/or severe pressure injuries, an enhanced prevention program using individual motivational intervention and group self-management training does not improve skin protective behaviours or pressure injury outcomes.
There is level 4 evidence (from two pre-post studies; Schubart et al. 2012; Brace & Schubart 2010) that online eLearning modules may improve knowledge on prevention of pressure injuries among persons with SCI.
There is level 4 evidence (from one case series study; Cobb et al. 2014) suggesting that a formal pressure injury prevention program can improve best practice adherence in an acute care facility.
There is level 1b evidence (from one randomized controlled trial; Rintala et al. 2008) that providing enhanced pressure injury education and structured follow-up is effective in reducing recurrence of pressure injuries especially in those individuals with no previous history of pressure injury surgery.
There is level 4 evidence (from one case series study; Ghaisas et al. 2015) to suggest that an intervention that focus on reducing risk through lifestyle, particularly habits and behaviour changes are related to improvements in the uptake of pressure management strategies, therefore improvements in pressure injury status.