Barriers to Care for Poststroke Visual Deficits in Alberta, Canada.

Poststroke visual impairment (VI) negatively affects rehabilitation potential and quality of life for stroke survivors. In this cross-sectional observational study, stroke survivors and providers were surveyed to quantify perspectives regarding care for poststroke VI in Alberta, Canada (n = 46 survivors; n = 87 providers). Few patients (35%) felt prepared to cope with VI at the time of discharge from acute stroke and inpatient rehabilitation settings. Less than 25% of stroke survivors, and <16% of providers, felt referral processes were adequate. 95.2% of providers and 82% of stroke survivors advocated for a provincial clinical pathway to improve care quality for poststroke VI.

A qualitative description of barriers to visual rehabilitation experienced by stroke survivors with visual impairment in Alberta, Canada.

BACKGROUND: Post-stroke visual impairment (VI) is a common but under-recognized care challenge. Common manifestations of post-stroke VI include: diplopia, homonymous hemianopia, oscillopsia secondary to nystagmus, and visual inattention or neglect. In acute care settings, post-stroke VI recognition and treatment are often sub-optimal as emphasis is placed on survival. Stroke survivors with VI often face inconsistencies when accessing care out of hospital because variable availability and subsidization of visual rehabilitation. We sought to identify gaps in care experienced by stroke survivors with VI from stroke survivors' and care providers' perspectives. METHODS: We conducted a qualitative description study across 12 care sites in Alberta, Canada, using semi-structured interviews. Survivor interviews focused on the health system experience. Provider interviews discussed approaches to care, perceived gaps, and current resources. Interviews were audio-recorded and transcribed. Iterative content analysis was completed using NVivo 12. We promoted rigour through an audit trail, open-ended questions, thick description, and collaborative coding. RESULTS: We completed 50 interviews: 19 survivor interviews and 31 provider interviews. The majority of survivors were male (n = 14) and recruited from community settings (n = 16). Providers varied in profession and location within the care continuum. Two key themes emerged from the provider and survivor interviews pertaining to (a) facets of visual rehabilitation (sub-themes: access, resources, and multidisciplinary professional interaction); and (b) functioning with post-stroke VI (sub-themes: early experiences post-stroke and living with VI in the real world). CONCLUSIONS: The visual rehabilitation model needs to be optimized to ensure transparent inter-disciplinary communication and efficient referral pathways. Future research will focus on evaluating the effectiveness of post-stroke care from multiple perspectives in Alberta.

Experiences of shared decision-making in community rehabilitation: a focused ethnography.

BACKGROUND: Shared decision-making (SDM) can advance patient satisfaction, understanding, goal fulfilment, and patient-reported outcomes. We lack clarity on whether this physician-focused literature applies to community rehabilitation, and on the integration of SDM policies in healthcare settings. We aimed to understand patient and provider perceptions of shared decision-making (SDM) in community rehabilitation, particularly the barriers and facilitators to SDM. METHODS: We used a focused ethnography involving 14 community rehabilitation sites across Alberta, including rural, regional-urban and metropolitan-urban sites. We conducted semi-structured interviews that asked participants about their positive and negative communication experiences (n = 23 patients; n = 26 providers). RESULTS: We found SDM experiences fluctuated between extremes: Getting Patient Buy-In and Aligning Expectations. The former is provider-driven, prescriptive and less flexible; the latter is collaborative, inquisitive and empowering. In Aligning Expectations, patients and providers express humility and openness, communicate in the language of ask and listen, and view education as empowering. Patients and providers described barriers and facilitators to SDM in community rehabilitation. Facilitators included geography influencing context and connections; consistent, patient-specific messaging; patient lifestyle, capacity and perceived outlook; provider confidence, experience and perceived independence; provider training; and perceptions of more time (and control over time) for appointments. SDM barriers included lack of privacy; waitlists and financial barriers to access; provider approach; how choices are framed; and, patient's perceived assertiveness, lack of capacity, and level of deference. CONCLUSIONS: We have found both excellent experiences and areas for improvement for applying SDM in community rehabilitation. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers. This research will support the spread, scale and evaluation of a new Model of Care in rehabilitation by the provincial health system, which aimed to promote patient-centred care.

Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences.

BACKGROUND: Mandates abound to share publicly-funded research data for reuse, while data platforms continue to emerge to facilitate such reuse. Birth cohorts (BC) involve longitudinal designs, significant sample sizes and rich and deep datasets. Data sharing benefits include more analyses, greater research complexity, increased opportunities for collaboration, amplification of public contributions, and reduced respondent burdens. Sharing BC data involves significant challenges including consent, privacy, access policies, communication, and vulnerability of the child. Research on these issues is available for biological data, but these findings may not extend to BC data. We lack consensus on how best to approach these challenges in consent, privacy, communication and autonomy when sharing BC data. We require more stakeholder engagement to understand perspectives and generate consensus. METHODS: Parents participating in longitudinal birth cohorts completed a web-based survey investigating consent preferences for sharing their, and their child's, non-biological research data. Results from a previous qualitative inquiry informed survey development, and cognitive interviewing methods (n = 9) were used to improve the question quality and comprehension. Recruitment was via personalized email, with email and phone reminders during the 14-day window for survey completion. RESULTS: Three hundred and forty-six of 569 parents completed the survey in September 2014 (60.8%). Participants preferred consent processes for data sharing in future independent research that were less-active (i.e. no consent or opt-out). Parents' consent preferences are associated with their communication preferences. Twenty percent (20.2%) of parents generally agreed that their child should provide consent to continue participating in research at age 12, while 25.6% felt decision-making on sharing non-biological research data should begin at age 18. CONCLUSIONS: These finding reflect the parenting population's preference for less project-specific permission when research data is non-biological and de-identified and when governance practices are highly detailed and rigourous. Parents recognize that children should become involved in consent for secondary data use, but there is variability regarding when and how involvement occurs. These findings emphasize governance processes and participant notification rather than project-specific consent for secondary use of de-identified, non-biological data. Ultimately, parents prefer general consent processes for sharing de-identified, non-biological research data with ultimate involvement of the child.

A survey of patient perspectives on the research use of health information and biospecimens.

BACKGROUND: Personal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research. METHODS: A 45-item survey was distributed to a convenience sample of patients at an outpatient clinic in a large urban centre. The survey briefly addressed sociodemographic and illness characteristics. Opinions were sought on the research use of health information and biospecimens including consent preferences. RESULTS: Two hundred eleven of 400 distributed surveys were completed (response rate 52.8 %). Respondents were generally supportive of medical research and trusting of researchers. Many respondents supported the use of their information and biospecimens for health research and also preferred consent be sought for use of health information and biospecimens. Some supported the use of their information and biospecimens for research without consent. There were significant differences in the opinions people offered regarding the research use of biospecimens compared to health information. Some respondent perspectives about consent were at odds with current regulatory and legal standards. CONCLUSIONS: Clinical health data and biospecimens are valuable research resources, critical to the advancement of medicine. Use of these data for research requires balancing respect for individual autonomy, privacy and the societal interest in the greater good. Incongruence between some respondent perspectives and the regulatory standards suggest both a need for public education and review of legislation to increase understanding and ensure the public's trust is maintained.

(Dis)-Trust in transitioning ventilator-dependent children from hospital to homecare.

BACKGROUND: Scholarly work is needed to develop the conceptual and theoretical understanding of trust to nursing practice. The transition from hospital care to complex pediatric homecare involves nurses in myriad roles, including management and care provision. Complex pediatric homecare transforms children, families, professionals, and communities, but its exact implications are unclear. RESEARCH OBJECTIVES: To conduct an ethical inquiry into the role and responsibilities of nurses in the qualitative experience of adults involved in the hospital-to-home transition of young, ventilator-dependent children. RESEARCH DESIGN: We followed methods described by Franco Carnevale. We used a sociologically grounded theoretical orientation-trust-to re-interpret qualitative data for an ethical inquiry into a specific facet of that data. PARTICIPANTS AND STUDY CONTEXT: The participants included 26 adults, including 14 nurses, involved in the hospital-to-home transition in a Canadian province. Participants represented family, hospital, home, and government. ETHICAL CONSIDERATIONS: The Conjoint Health Research Ethics Board at the University of Calgary approved this study. FINDINGS: First, the concept and practice of trust was salient to the experience of transition. For example, responsibilities' allocation between hospital-based professionals to mothers, home-based nurses, and non-professionals necessitated reliance and vulnerability. Second, the consequences of distrust connected to recognized challenges. For example, tensions along rural-urban, medical-family, and professional-personal divide each revealed suspicion and uncertainty that led to isolation and anxiety for all involved. Third, recommendations to improve the experience and mitigate the challenges of transition can be grounded in trust promotion. For example, transition-specific education programs and codes of ethics would promote openness, recognize mutual vulnerability, and advance trust in transition. CONCLUSIONS: The challenges to transition evidenced distrust, while trust represents a powerful tool to counter these challenges and their implications. A climate of trust could bridge divides between mothers and professionals; rural and urban professionals; and professionals with differing relationships with the family.

Implementation of a Provincial Long COVID Care Pathway in Alberta, Canada: Provider Perceptions.

A novel, complex chronic condition emerged from the COVID-19 pandemic: long COVID. The persistent long COVID symptoms can be multisystem and varied. Effective long COVID management requires multidisciplinary, collaborative models of care, which continue to be developed and refined. Alberta's provincial health system developed a novel long COVID pathway. We aimed to clarify the perspectives of multidisciplinary healthcare providers on the early implementation of the provincial long COVID pathway, particularly pathway acceptability, adoption, feasibility, and fidelity using Sandelowki's qualitative description. Provider participants were recruited from eight early-user sites from across the care continuum. Sites represented primary care (n = 4), outpatient rehabilitation (n = 3), and COVID-19 specialty clinics (n = 2). Participants participated in structured or semi-structured virtual interviews (both group and 1:1 were available). Structured interviews sought to clarify context, processes, and pathway use; semi-structured interviews targeted provider perceptions of pathway implementation, including barriers and facilitators. Analysis was guided by Hsieh and Shannon as well as Sandelowski. Across the eight sites that participated, five structured interviews (n = 13 participants) and seven semi-structured interviews (n = 15 participants) were completed. Sites represented primary care (n = 4), outpatient rehabilitation (n = 3), and COVID-19 specialty clinics (n = 2). Qualitative content analysis was used on transcripts and field notes. Provider perceptions of the early implementation outcomes of the provincial long COVID pathway revealed three key themes: process perceptions; awareness of patient educational resources; and challenges of evolving knowledge.

Evaluating Efficiency of a Provincial Telerehabilitation Service in Improving Access to Care During the COVID-19 Pandemic.

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.

Exploring patient centredness, communication and shared decision-making under a new model of care: Community rehabilitation in canada.

Patient-centred care and patient engagement in healthcare and health research are widely mandated by funders, health systems and institutions. Increasingly, shared decision-making (SDM) is recognised as promoting patient-centred care. We explore this relationship by studying SDM in the context of integrating novel patient-centred policies in community rehabilitation. There is little research on SDM in rehabilitation, and less so in the critical community context. Patient co-investigators led study co-design. We aimed to describe how patients and providers experience SDM at community rehabilitation sites that adopted a novel, patient-centred Rehabilitation Model of Care (RMoC). Guided by focused ethnography, we conducted focus groups and interviews. Patient and professional participants were recruited from 10 RMoC early-adopter community rehabilitation sites. Sites varied in geography, patient population and provider disciplines. Patient and community engagement researchers used a set-collect-reflect method to document patient perspectives. Researchers captured provider perspectives using a semi-structured question guide. We completed 11 focus groups and 18 interviews (n = 45 providers, n = 17 patients). We found that most early-adopter providers spoke in a shared, patient-first language that focused on patient readiness, barriers and active listening. Congruent patient perceptions reflected inclusion in decision-making, goal setting and positive relationships. Many patients queried how care would become and remain accessible before and after community rehabilitation care respectively. Remaining connected while in the community was described as important to patients. Providers identified barriers like time, team dynamics and lack of clarity on the RMoC aims, which challenged the initiative's long-term sustainability. Policy innovations can promote SDM and communication through multiple strategies and training to facilitate candid, encouraging conversations. Sustainability of SDM gains is paramount. Most providers moved beyond tokenistic engagement, but competing responsibilities and team member resistance could thwart continuity. Further research is needed to empirically assess respectful and compassionate communication and SDM in community rehabilitation long term.

Development of a Novel Care Rehabilitation Pathway for Post-COVID Conditions (Long COVID) in a Provincial Health System in Alberta, Canada.

OBJECTIVE: The purpose of this study was to describe the development and composition of a codesigned, multidisciplinary, integrated, systematic rehabilitation framework for post-COVID conditions (PCC) that spans the care continuum to streamline and standardize rehabilitation services to support persons with PCC in Alberta, Canada. METHODS: A collaborative, consensus-based approach was used involving 2 iterative provincial taskforces in a Canadian provincial health system. The first taskforce (59 multidisciplinary stakeholders) sought to clarify the requisite facets of a sustainable, provincially coordinated rehabilitation approach for post-COVID rehabilitation needs based on available research evidence. The second taskforce (129 multidisciplinary stakeholders) translated that strategy and criteria into an operational framework for provincial implementation. Both taskforces sought to align with operational realities of the provincial health system. RESULTS: The summation of this collaborative consensus approach resulted in the Provincial Post COVID-19 Rehabilitation Response Framework (PCRF). The PCRF includes 3 care pathways across the care continuum specifically targeting in-hospital care, continuing care, and community-based care with 3 key elements: (1) the use of specific symptom screening and assessment tools to systematically identify PCC symptoms and functional impairments, (2) pathways to determine patients' rehabilitation trajectory and guide their transition between care settings, and (3) self-management and education resources for patients and providers. CONCLUSION: The PCRF aligns with international mandates for novel, codesigned, multidisciplinary approaches to systematically address PCC and its myriad manifestations across the care continuum. The PCRF allows for local adaptation and highlights equity considerations, allowing for further spread and scale provincially, nationally, and internationally. IMPACT: The PCRF is a framework for health systems to ensure consistent identification, assessment, and management of the rehabilitation needs of postacute and chronic PCC. Rehabilitation providers and health systems can build from the PCRF for their local communities to reduce unmet needs and advance the standardization of access to rehabilitation services for persons with PCC.