Development of community participation indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project

Abstract

Context Community participation following spinal cord injury/disease (SCI/D) can be challenging due to associated primary impairments and secondary health conditions as well as difficulties navigating both the built and social-emotional environment. To improve the quality of SCI/D rehabilitation care to optimize community participation, the SCI-High Project developed a set of structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. Methods A pan-Canadian Working Group of diverse stakeholders: (1) defined the community participation construct; (2) conducted a systematic review of available outcomes and their psychometric properties; (3) constructed a Driver diagram summarizing available evidence associated with community participation; and (4) prepared a process map. Facilitated meetings allowed selection and review of a set of structure, process and outcome indicators. Results The structure indicator is the proportion of SCI/D rehabilitation programs with availability of transition living setting/independent living unit. The process indicators are the proportion of SCI/D rehabilitation inpatients who experienced: (a) a therapeutic community outing prior to rehabilitation discharge; and, (b) those who received a pass to go home for the weekend. The intermediary and final outcome measures are the Moorong Self-Efficacy Scale and the Reintegration to Normal Living Index. Conclusion The proposed indicators have the potential to inform whether inpatient rehabilitation for persons with SCI/D can improve self-efficacy and lead to high levels of community participation post-rehabilitation discharge.

Measures for Persons with Spinal Cord Injury to Monitor Their Transitions in Care, Health, Function, and Quality of Life Experiences and Needs: A Protocol for Co-Developing a Self-Evaluation Tool

“…Similar to our study, others described processes for identifying measurement domains and indicators specifically for PwSCI. For example, a few studies focused on processes for identifying measures related to rehabilitation and community-based experiences [ 16 , 30 , 43 , 44 ]. Processes varied in these studies, but the unique aspect of our study is that we used a rigorous staged approach in the protocol to guide the co-design work to explore and select/develop our tool/measures, with each subsequent stage being dependent on key actions or findings from the previous stage.…”

“…As we wanted to reach a 75% consensus on selected tools or measures, we went back to stakeholders several times and in different ways to get their input and ensure we had adequate response rates. Stakeholders reached the targeted ≥75% consensus needed regarding decisions for selecting tools or selecting and/or developing specific measures/items for one tool [ 16 , 30 , 43 ]. There was a realization that no one tool could be perfect in measuring all of the experiences relevant to any particular issue or circumstance, and since this tool was intended to be a snapshot, stakeholders accepted this limitation with one tool versus 10 tools.…”

“…This included their lifelong changes in health status, function, and QOL, as well as care needs [ 26 ], across the continuum of care from acute to rehabilitation to community, as well as multiple transitions across care settings and care providers [ 1 , 16 ]. Rather, most studies appear more focused on such areas as the array of health or individualized care needs [ 26 , 27 ], or one of the setting contexts of acute, rehabilitation, discharge [ 28 ], or community care or follow-up [ 15 , 29 , 30 , 31 ]. Various challenges, problems, or gaps experienced by PwSCI inhibiting them from fulfilling their needs have been shown to impact their QOL; increase their chances of morbidity, adverse events, hospital readmissions, emergency room visits; and/or decrease their overall satisfaction with life’s experiences [ 32 ].…”

Collaborative networks to achieve innovations in care

“… 11 Further domains and indicators will be added as the Consortium work continues in 2021, including the implementation of the community participation domain. 12 …”