Background Following spinal cord injury (SCI), family members are often called upon to undertake the caregiving role. This change in the nature of the relationship between the individuals with SCI and their families can lead to emotional, psychological, and relationship challenges. There is limited research on how individuals with SCI and their family caregivers adapt to their new lives post-injury, or on which dyadic coping strategies are used to maintain relationships. Thus, the objectives of this study were to obtain an in-depth understanding of 1) the experiences and challenges within a caregiving relationship post-SCI among spouses, as well as parents and adult children; and 2) the coping strategies used by caregivers and care recipients to maintain/rebuild their relationships. Methods A qualitative descriptive approach with an exploratory design was used. Semi-structured face-to-face and telephone interviews were conducted. Thematic analysis was used to identify key themes arising from individuals with SCI’s ( n = 19) and their family caregivers’ ( n = 15) experiences. Results Individuals with SCI and family caregivers spoke in-depth and openly about their experiences and challenges post-injury, with two emerging themes (including subsequent sub-themes). The first theme of deterioration of relationship, which reflects the challenges experienced/factors that contributed to disintegration in a relationship post-injury, included: protective behaviours, asymmetrical dependency, loss of sex and intimacy, and difficulty adapting. The second theme of re-building/maintaining the relationship, which reflects the strategies used by dyads to adjust to the changes within the relationship brought upon by the injury, included: interdependence, shifting commonalities, adding creativity into routine, and creating a new normal. Conclusions These findings should alert healthcare professionals and peer support groups as to the need for possible education and training (e.g., coping strategies, communication skills training) as well as counseling prior to discharge to assist individuals with SCI and family caregivers with adaptation to a new life post-injury.

Background: High-quality rehabilitation care following spinal cord injury or disease (SCI/D) is critical for optimizing neurorecovery and long-term health outcomes . This manuscript describes the methods used for developing, refining, and implementing a framework of structure, process, and outcome indicators that reflect high-quality rehabilitation among adults with SCI/D in Canada. Methods: This quality improvement initiative was comprised of the following processes: (1) prioritization of care Domains by key stakeholders (scientists, clinicians, therapists, patients and stakeholder organizations); (2) assembly of 11 Domain-specific Working Groups including 69 content experts; (3) conduct of literature searches, guideline and best practice reviews, and outcome synthesis by the Project Team; (4) refinement of Domain aim and construct definitions; (5) conduct of cause and effect analysis using Driver diagrams; (6) selection and development of structure, process and outcome indicators; (7) piloting and feasibility analysis of indicators and associated evaluation tools; and, (8) dissemination of the proposed indicators. Result: The Project Team established aims, constructs and related structure, process, and outcome indicators to facilitate uniform measurement and benchmarking across 11 Domains of rehabilitation, at admission and for 18 months thereafter, among adult Canadians by 2020. Conclusion: These processes led to the selection of a feasible set of indicators that once implemented should ensure that adults with SCI/D receive timely, safe, and effective rehabilitation services. These indicators can be used to assess health system performance, monitor the quality of care within and across rehabilitation settings, and evaluate the rehabilitation outcomes of the population to ultimately enhance healthcare quality and equity.