Gaps in the Evidence

This review of the literature on SCI SM interventions reveals several gaps in the current scientific evidence which carries implications for future research. First, it is worth noting that only a small proportion of studies reviewed in this chapter provided a definition of the term SM in their reporting of the intervention programs. Given the variability in the conceptualization of SM and the complex nature of SCI SM interventions, to assist the future evaluation and uptake of evidence, it is important for researchers to clearly define key terms, such as SM, in their work.

In addition, although SM programs were varied in topics, there was a dearth of studies on sexual health and vocational rehabilitation. Despite being central to an individual’s wellbeing, sexual health post-SCI is often a neglected area of care. As such, more programming related to sexual health is warranted. Similarly, employment post-SCI remains low, and further work exploring how SM may support return-to-work strategies is strongly recommended. Furthermore, within the body of work on SM, difficulties in accessing needed medical and social services and financial assistance have been identified as a major barrier in the management of various chronic conditions, including SCI. To address this challenge, SM interventions for SCI need to move beyond information provision on available resources and services and place focus on teaching program participants how to effectively communicate with service providers and to advocate for a more accessible environment. However, as indicated in our findings, this aspect of SM was rarely dealt with in the existing intervention studies on the management of SCI. This is reflected in the low frequency of utilization of the forming patient-health care provider partnership component defined in Lorig’s taxonomy, the training/rehearsal to communicate with healthcare professionals component defined in the PRISMS taxonomy, and the communication component defined in Barlow’s taxonomy. This discrepancy between patient needs and current program provision calls for more research on SM interventions integrating self-advocacy and communication skill training in the future.

Finally, the clinical and demographic characteristics vary considerably across patients with SCI, and each individual is likely to respond differently to the same SM intervention program; thus, a one-size-fits-all approach to SM interventions is not likely to result in success. More comparative studies and in-depth qualitative studies are needed to assist researchers and practitioners in better understanding how to tailor intervention programs to meet specific subgroups and individuals’ unique needs.