PURPOSE:People with Spinal cord injuries (SCI) experience multiple transitions during their healthcare journey. This qualitative study aims to understand experiences of people with SCI, and perceptions from family members, and some healthcare providers on the transitions through the healthcare system in Alberta, Canada. METHODS:Using purposive sampling, 49 participants were interviewed, including 22 people with SCI and 27 stakeholders, including family members and providers, a community-based participatory research study was conducted. Data were analyzed using reflexive thematic inductive comparative analyses of transcripts along with interviewers' field notes. RESULTS:We identified the following nine overarching themes identifying 9 key areas (1) communication; (2) compassion, (3) healthcare providers' empathy, and humility; (4) continuity of care; (5) adequate preparation for discharge; (6) availability and accessibility of resources in the community; (7) mental health supports; (8) peer support and support from community-based organizations; and (9) education and managing of healing expectations. Interpreting these themes allowed us to identify key areas of opportunity to improve the transitions of people living with SCI in Alberta. CONCLUSIONS:Transitions in care after SCI is a complex phenomenon. In the absence of continuity of care across the healthcare services, people with SCI are susceptible to adverse health outcomes. Addressing the identified gaps within these transitions will improve their quality.
Background: People with spinal cord injuries (SCI) experience many transitions between care services. Knowing their emotional, experiential, and social perspectives during these transitions are essential to identify key moments to improve their journeys. The main purpose of this study was to understand the experiences of people with SCI living in Alberta, Canada, during their transitions of care through the analysis of their health pilgrimages. Methods: A virtual ethnographic qualitative constructivist approach was implemented using in-depth interviews conducted via phone or online video platform with 22 people living with SCI in rural and urban areas of Alberta as well as 27 family members and care providers. Results: The health pilgrimages of participants with SCI included key moments across nine distinct stages. We then proposed a critical interpretative framework formed by six statements, which can guide actions to improve the overall experience of people through their health pilgrimages. Using this framework, we identified three general key actions to improve SCI pilgrimages: 1) Understanding SCI from a multiplicity of perspectives, 2) Addressing structural violence, and 3) Co-constructing thriving opportunities. Conclusions: SCI Health Pilgrimages include different types of events characterizing key moments which could further guide improvements on how people experience their journeys living with this chronic condition. We propose six concrete statements that provide direction to create changes to improve SCI health pilgrimages.
CONTEXT/OBJECTIVE:Urinary tract infections (UTIs) are one of the most frequent secondary complications among people with spinal cord injury (SCI). The prevention and management of UTIs is prioritized by stakeholders across Canada. The purpose of this study was to gain an in-depth understanding of the urinary bladder (bladder) management experiences of people with SCI in Alberta communities, especially how UTIs are experienced and managed.DESIGN:Convergent mixed methods parallel databases variant.SETTING:Communities across Alberta, Canada.PARTICIPANTS:39 survey participants and 19 interview participants, all with SCI.METHODS:One-on-one phone semi-structured interviews analyzed using thematic analysis. Quantitative surveys included demographic, multichoice, and Likert Scale questions analyzed using descriptive analysis. Both methods explored people with SCI's experiences with bladder management and UTIs. Qualitative and quantitative results were integrated through a comparison joint display table and meta-inferences.OUTCOME MEASURES:Qualitative themes and descriptive statistics further integrated as mixed core-statements.RESULTS:Bladder routine is central to daily life and maintaining bladder health, avoiding UTIs, is the priority. Several health inequities are related to (1) financial barriers dictating how bladder is managed, (2) low perceived support for appropriate bladder management, (3) low healthcare access to appropriate UTI management and (4) low providers' capacity to support bladder management and build trust with persons with SCI.CONCLUSION:Action is required to address identified health inequities, including improvement of financial support, like appropriate catheter coverage, decrease barriers to access appropriate care and improvement of providers' capacity to address SCI bladder care.
Study design: Guided by the 4-step process outlined in the Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) guideline, multiple methodologies were used: Delphi, literature reviews, ratings with consensus, think-aloud, and test-retest. Objectives: The purpose of this study was to develop and test a spinal cord injury (SCI) peer support evaluation tool that meets the needs of community-based SCI organizations in Canada. Setting: Peer support programs for people with SCI delivered by community-based SCI organizations. Methods: This research was co-constructed with executives and staff from SCI community-based organizations, people with SCI, researchers, and students. Given the multiple steps of this study, sample size and characteristics varied based on each step. Participants included people with SCI who received peer support (mentees) or provided peer support (mentors/supporters) and staff of community-based organizations. Results: In step 1, the 20 most important outcomes for SCI peer support were identified. In step 2 and 3, the 97 items were identified to assess the outcomes and by using rating and multiple consensus methodologies 20 items, one to assess each outcome, were selected. In step 4, content and face validity and test-retest reliability were achieved. The resulting SCI Peer Support Evaluation Tool consists of 20 single-item questions to assess 20 outcomes of SCI peer support. Conclusion: Through a systematic process, the SCI Peer Support Evaluation Tool is now ready to be implemented to assess outcomes of SCI peer support programs delivered by community-based SCI organizations.
