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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.
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Scope: Early in the COVID-19 pandemic, community rehabilitation stakeholders from a provincial health system designed a novel telerehabilitation service. The service provided wayfinding and self-management advice to individuals with musculoskeletal concerns, neurological conditions, or post-COVID-19 recovery needs. This study evaluated the efficiency of the service in improving access to care. Methodology: We used multiple methods including secondary data analyses of call metrics, narrative analyses of clinical notes using artificial intelligence (AI) and machine learning (ML), and qualitative interviews. Conclusions: Interviews revealed that the telerehabilitation service had the potential to positively impact access to rehabilitation during the COVID-19 pandemic, for individuals living rurally, and for individuals on wait lists. Call metric analyses revealed that efficiency may be enhanced if call handling time was reduced. AI/ML analyses found that pain was the most frequently-mentioned keyword in clinical notes, suggesting an area for additional telerehabilitation resources to ensure efficiency.
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PURPOSE: The aim of the study is to use the World Health Organization community-based rehabilitation matrix for understanding services' contributions to foster community participation for people with traumatic spinal cord injury. METHODS: This study used a convergent mixed-methods design with a quantitative arm describing the frequency with which services contributed to 22 of the community-based rehabilitation-matrix elements and a qualitative arm involving document reviews and stakeholder interviews. Results were integrated following Onwuegbuzie and Teddlie's method (i.e., quan + QUAL). RESULTS: Twenty of the 22 (91%) of the World Health Organization community-based rehabilitation elements were addressed by traumatic spinal cord injury services. Five types of services were identified. Integrated results showed that the strengths of traumatic spinal cord injury services were as follows: (1) comprehensiveness; (2) essential medical services publicly funded; (3) numerous social protections available; and (4) highly active community-based organizations. Identified opportunities to improve these services were as follows: (1) increase specificity for traumatic spinal cord injury and (2) increase communication and integration among services. CONCLUSIONS: Services available for people with traumatic spinal cord injury in the province studied address most of the elements of the World Health Organization community-based rehabilitation matrix. However, lack of cohesion between services could create gaps that hinder community participation. Addressing these gaps could improve the quality of life and outcomes of people with traumatic spinal cord injury.
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Qualidade de Vida , Traumatismos da Medula Espinal , Humanos , Serviços de Saúde Comunitária , Participação da Comunidade , Organização Mundial da Saúde , Traumatismos da Medula Espinal/reabilitaçãoRESUMO
BACKGROUND: COVID-19 disrupted services received by persons with spinal cord injury (SCI) worldwide. The International Disability Alliance declared the need for a disability-inclusive response to the COVID-19 crisis, as decreased access to health care services for individuals living with varying levels of function was unacceptable. As a result, an SCI community in Canada created a novel webinar-based strategy aimed at improving access to self-management information for people living with SCI and other stakeholders. However, although telehealth practices have previously been used effectively in SCI management and rehabilitation, little to no scholarship has investigated the outcomes of implementing a webinar-based telehealth strategy in this population. OBJECTIVE: This study aims to understand the outcomes of implementing the webinar series. Specifically, the authors aimed to determine the reach of the series; understand its impact on social connectedness, perceptions of disability, and overall quality of interactions among persons with SCI, their families, service providers, and the public at large; and explore the long-term sustainability of the initiative. METHODS: The authors implemented a community-based participatory strategy to define a convergent mixed methods design to triangulate qualitative and quantitative data collected simultaneously. Quantitative methods included pop-up questions administered during the live webinars, surveys administered following webinars, and an analysis of YouTube analytics. Qualitative methods included semistructured interviews with persons with SCI and health care providers who attended at least one webinar. The results were integrated, following methods adapted from Creswell and Clark. RESULTS: A total of 234 individuals attended at least 1 of the 6 webinars that took place during the 6-month study period. In total, 13.2% (31/234) of the participants completed the postwebinar survey, and 23% (7/31) participated in the semistructured interviews. The reach of the webinar series was mainly to persons with SCI, followed by health professionals, with most of them living in urban areas. The topics sexuality and research were the most viewed on YouTube. The knowledge disseminated during the webinars was mainly perceived as valid and useful, related to the fact that the presentation format involved people with lived experience and clinical experts. The webinars did not necessarily help build a new extended community of people involved in SCI but helped strengthen the existing community of people with SCI in Alberta. The webinar positively influenced the perceptions of normality and disability regarding people with SCI. The webinar format was perceived as highly usable and accessible. CONCLUSIONS: The webinar series was associated with improved participant knowledge of what is possible to achieve after an SCI and their perceptions of disability. The long-term implementation of this initiative is feasible, but further considerations to increase its reach to rural areas and ensure the integration of diverse individuals should be taken.
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Background: Spinal cord injury (SCI) results in long-term functional impairments that significantly impact participation and role in the community. Newly injured persons are often reintroduced to the community with significant deficits in knowledge, including how to access and navigate community resources and supports. This warrants a better understanding of the patient experience of in-hospital care and discharge planning to ensure individuals with SCI are best supported during transitions in care and while living in the community. Objective: To explore the lived experience of persons with acute SCI and their perceptions of care, focusing on the initial hospital experiences to inpatient rehabilitation. Methods: A phenomenological research study was conducted using semi-structured interviews. Eligible participants had differing etiologies of SCI (including non-traumatic and traumatic SCI), were over the age of 18 at the time of initial care, and experienced acute hospital and inpatient rehabilitation at an Alberta-based institution within the last 10 years. One-on-one interviews took place between March and June 2021 over telephone or virtual platforms (Zoom). Interview transcripts, and field notes developed the text, which underwent hermeneutic analysis to develop central themes. Results: The present study included 10 participants living with an SCI in Alberta, Canada. Most participants (80%) were male. Participants' age ranged from 24 to 69 years. The median years since initial SCI was 3 years. Interviews lasted 45-75 min. Seven participants identified as having a traumatic SCI injury and three identified as having a non-traumatic SCI. The interplay between empowerment and disempowerment emerged as the core theme, permeating participants' meanings and perceptions. Three main themes emerged from the interviews regarding the perceptions of the SCI patient experience. Each theme represents a perception central to their inpatient experience: desire to enhance functional independence to empower confidence and self-management; need for effective communication with healthcare providers to support recovery; and navigating appropriate care supports to enhance preparedness for discharge and returning home. Conclusion: This study demonstrates the significant need to enhance education of person/family-centered SCI care, foster positive communication between care recipients and care providers, and facilitate better in-hospital access to appropriate navigation and wayfinding supports.
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Introduction: A novel telerehabilitation service provides wayfinding and self-management advice to persons with neurological, musculoskeletal, or coronavirus disease 2019 related rehabilitation needs. Method: We utilized multiple methods to evaluate the impact of the service. Surveys clarified health outcomes (quality of life, self-efficacy, social support) and patient experience (telehealth usability; general experience) 3-months post-call. We analysed associations between, and within, demographics and survey responses. Secondary analyses described health care utilization during the first 6 months. Results: Sixty-eight callers completed the survey (42% response rate). Self-efficacy was significantly related to quality of life, interpersonal support and becoming productive quickly using the service. Becoming productive quickly was significantly related to quality of life. Education level was related to ethnicity. Survey respondents' satisfaction and whether they followed the therapist's recommendations were not significantly associated with demographics. Administrative data indicated there were 124 callers who visited the emergency department before, on, or after their call. The average (SD) frequency of emergency department visits before was 1.298 times (1.799) compared to 0.863 times (1.428) after. Discussion: This study offers insights into the potential impact of the telerehabilitation service amidst pandemic restrictions. Usability measurements showed that callers were satisfied, corroborating literature from pre-pandemic contexts. The satisfaction and acceptability of the service does not supplant preferences for in-person visits. The survey sample reported lower quality of life compared with the provincial population, conflicting with pre-pandemic research. Findings may be due to added stressors associated with the pandemic. Future research should include population-level comparators to better clarify impact.
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BACKGROUND: The COVID-19 pandemic and concomitant governmental responses have created the need for innovative and collaborative approaches to deliver services, especially for populations that have been inequitably affected. In Alberta, Canada, two novel approaches were created in Spring 2020 to remotely support patients with complex neurological conditions and rehabilitation needs. The first approach is a telehealth service that provides wayfinding and self-management advice to Albertans with physical concerns related to existing neurological or musculoskeletal conditions or post-COVID-19 recovery needs. The second approach is a webinar series aimed at supporting self-management and social connectedness of individuals living with spinal cord injury. OBJECTIVE: The study aims to evaluate the short- and long-term impacts and sustainability of two virtual modalities (telehealth initiative called Rehabilitation Advice Line [RAL] and webinar series called Alberta Spinal Cord Injury Community Interactive Learning Seminars [AB-SCILS]) aimed at advancing self-management, connectedness, and rehabilitation needs during the COVID-19 pandemic and beyond. METHODS: We will use a mixed-methods evaluation approach. Evaluation of the approaches will include one-on-one semistructured interviews and surveys. The evaluation of the telehealth initiative will include secondary data analyses and analysis of call data using artificial intelligence. The evaluation of the webinar series will include analysis of poll questions collected during the webinars and YouTube analytics data. RESULTS: The proposed study describes unique pandemic virtual modalities and our approaches to evaluating them to ensure effectiveness and sustainability. Implementing and evaluating these virtual modalities synchronously allows for the building of knowledge on the complementarity of these methods. At the time of submission, we have completed qualitative and quantitative data collection for the telehealth evaluation. For the webinar series, so far, we have distributed the evaluation survey following three webinars and have conducted five attendee interviews. CONCLUSIONS: Understanding the impact and sustainability of the proposed telehealth modalities is important. The results of the evaluation will provide data that can be actioned and serve to improve other telehealth modalities in the future, since health systems need this information to make decisions on resource allocation, especially in an uncertain pandemic climate. Evaluating the RAL and AB-SCILS to ensure their effectiveness demonstrates that Alberta Health Services and the health system care about ensuring the best practice even after a shift to primarily virtual care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/28267.