A qualitative study on the Virtual Emergency Department care experiences of equity-deserving populations.

Patients from equity-deserving populations, such as those who are from racialized communities, the 2SLGBTQI+ community, who are refugees or immigrants, and/or who have a disability, may experience a unique set of challenges accessing virtual models of care. The objective of this qualitative study was to describe the experiences of patients from equity-deserving communities and their family members who received care from a Virtual Emergency Department (ED) in Toronto, Canada. Forty-three participants (36 patients and 7 family caregivers) with different and intersecting identities who used the Virtual ED participated in the study. Semi-structured interviews were conducted to explore reasons for accessing the Virtual ED, barriers to access, and how the Virtual ED met their care needs and expectations, including ways their experience could have been improved. Thematic analysis was used to identify themes from the data. Patients from equity-deserving populations described negative past experiences with ED in-person care, which included recounts of discrimination or culturally insensitive care while waiting to see the ED physician or nurse. Conversely, participants found the Virtual ED to be a socially and culturally safe space since they could now by-pass the waiting room experience. However, virtual care could not replace in-person care for certain issues (e.g., physical exam), and there was a need for greater promotion of the service to specific communities that might benefit from having access to the Virtual ED. Targeted outreach to help raise awareness of the service to equity-deserving communities is an important future direction.

"Filling in the gap": A qualitative case study about identity construction of siblings of youth with a neurodisability.

INTRODUCTION: In families of children with a neurodisability, siblings have unique experiences that can shape their identity. There is limited information about the developmental process of how siblings form their identity. This study aims to understand the identity construction of young siblings who have a sibling with a neurodisability. METHODS: As part of a patient-oriented research program, we engaged with our Sibling Youth Advisory Council in Canada. In this qualitative case study, data from semi-structured interviews augmented by photo elicitation and graphic elicitation of relational maps were analyzed using reflexive thematic analysis. RESULTS: Nineteen sibling participants (median age = 19 years, range = 14-33 years) reflected on the uniqueness of their role during childhood. During adolescence and emerging adulthood, they became closer with their sibling with a neurodisability and increased communication with their parents about how to care for their sibling with a neurodisability. These experiences influenced how they explored and began to reconcile their sibling identity with their professional and social identities. CONCLUSION: Siblings of youth with a neurodisability discover their unique identity and require support in this developmental process. Future interventions could evaluate how supports for siblings can have an impact on the positive development of their identity.

Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood.

BACKGROUND: During the transition to adulthood, a common challenge that youth with a neurodisability may experience is learning how to navigate services in the adult care system. During this transition youth may rely on their families, including siblings, for support. However, delineation of sibling roles and responsibilities during this transition period are unclear. This study aims to identify the roles and responsibilities that siblings perceive to have with their sibling with a neurodisability during the transition to adulthood, and describe the decision-making process of how siblings chose these roles. METHODS: In this descriptive qualitative case study, siblings were eligible to participate if they were between 14 to 40 years old, had a sibling between 14 to 21 years with a childhood-onset neurodisability and spoke English. Semi-structured interviews augmented by techniques of photo elicitation and relational maps were conducted. Reflexive thematic analysis was applied to identify sibling roles, as well as the emotional and decision-making process associated with these roles. Our team partnered with siblings with lived experience in all study phases. RESULTS: Nineteen participants (median age = 19 years, range = 14 to 33 years) from 16 unique families were interviewed. Six unique roles were described: friend, role model/mentor, protector, advocate, supporter, or caregiver. The emotions that siblings experienced with each role, also known as emotional responsibility, were categorized into levels of low, medium or high. Siblings also described a four-phase decision-making process for their roles: (1) acquiring knowledge; (2) preparing plans; (3) making adjustments; and (4) seeking support. Intrapersonal characteristics, including personal identity, values and experiences, influenced roles assumed by siblings. CONCLUSIONS: Siblings identified needing support as they process their decisions and emotional responsibility in their roles when their sibling with a neurodisability is transitioning to adulthood. Resources should be developed or further enhanced to support siblings.

Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research.

BACKGROUND: While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15-17 years old. Our research team created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout our multi-year and multi-stage project. MAIN BODY: This commentary, initiated and co-authored by members of our PFAC, researchers, staff, and a trainee, describes how we corrected the course of our partnership in response to critical feedback from partners. We begin by highlighting an email testimonial from a young adult PFAC member, which constituted a "critical turning point," that unveiled feelings of unclear expectations, lack of appreciation, and imbalanced relationships among PFAC members. As a team, we reflected on our partnership experiences and reviewed documentation of PFAC activities. This process allowed us to set three intentions to create a collective goal of authentic and meaningful engagement and to chart the course to get us there: (1) offering clarity and flexibility around participation; (2) valuing and acknowledging partners and their contributions; and (3) providing choice and leveraging individual interests and strengths. Our key recommendations include: (1) charting the course with a plan to guide our work; (2) learning the ropes by developing capacity for patient-oriented research; (3) all hands on deck by building a community of engagement; and (4) making course corrections and being prepared to weather the storms by remaining open to reflection, re-evaluation, and adjustment as necessary. CONCLUSIONS: We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research.

De-implementing low-value continuous pulse oximetry practice in infants hospitalized with bronchiolitis: A multicentre qualitative study.

BACKGROUND: Clinical trial evidence supports the routine use of intermittent pulse oximetry in stabilized infants hospitalized with bronchiolitis. However, continuous pulse oximetry use is common. OBJECTIVE: This study aimed to understand the barriers and facilitators to de-implement continuous pulse oximetry and implement intermittent pulse oximetry in infants hospitalized with stabilized bronchiolitis. METHODS: This multicentre qualitative study interviewed attending pediatricians, residents, nurses, respiratory therapists, and caregivers of infants hospitalized with bronchiolitis at hospitals in Ontario, Canada, to explore beliefs, attitudes, and experiences regarding pulse oximetry use in bronchiolitis management. Data were analyzed using thematic analysis to understand barriers and facilitators to practice change, mapped to the Consolidated Framework for Implementation Research (CFIR) domains. RESULTS: Sixty-seven participants from six hospitals were interviewed using individual interviews and focus groups. Healthcare providers emphasized the importance of identifying and understanding who is responsible for bedside pulse oximetry practice (physicians vs. nurses). Clinical experience, knowledge of guidelines, importance versus competing priorities, and the tensions among team members due to practice variation in monitoring, influenced monitoring practice. Nurses believed in the advantages of intermittent monitoring (reduced alarm fatigue, facilitation of timely discharges, and reduced workload). Clinicians identified ways to clarify indications for continuous monitoring (based on patient risk factors), versus indications to transition to intermittent monitoring (established oral feeding, sleeping without desaturations). Caregivers did not express a clear preference for monitoring type; rather, they described the need for clear communication around interpreting monitor readings, management decisions, and care transitions. CONCLUSIONS: Understanding professional roles, clarity around local practice standards and supporting families' understanding of pulse oximetry practice is essential for practice change. These findings may inform hospital quality improvement efforts to de-implement continuous monitoring in bronchiolitis hospital care.

Factors associated with research participation in a large primary care practice-based pediatric cohort: Results from the TARGet Kids! longitudinal cohort study.

BACKGROUND: All longitudinal cohort studies strive for high participant retention, although attrition is common. Understanding determinants of attrition is important to inform and develop targeted strategies to improve study participation. We aimed to identify factors associated with research participation in a large children's primary care cohort study. METHODS: In this longitudinal cohort study between 2008 and 2020, all children who participated in the Applied Research Group for Kids (TARGet Kids!) were included. TARGet Kids! is a large primary care practice-based pediatric research network in Canada with ongoing data collection at well-child visits. Several sociodemographic, health, and study design factors were examined for their associations with research participation. The primary outcome was attendance of eligible research follow-up visits. The secondary outcome was time to withdrawal from the TARGet Kids! study. Generalized linear mixed effects models and Cox proportional hazard models were fitted. We have engaged parent partners in all stages of this study. RESULTS: A total 10,412 children with 62,655 total eligible research follow-up visits were included. Mean age at enrolment was 22 months, 52% were male, and 52% had mothers of European ethnicity. 68.4% of the participants attended at least 1 research follow-up visit. Since 2008, 6.4% of the participants have submitted a withdrawal request. Key factors associated with research participation included child age, ethnicity, maternal age, maternal education level, family income, parental employment, child diagnosis of chronic health conditions, certain study sites, and missingness in questionnaire data. CONCLUSIONS: Socioeconomic status, demographic factors, chronic conditions, and missingness in questionnaire data were associated with research participation in this large primary care practice-based cohort study of children. Results from this analysis and input from our parent partners suggested that retention strategies could include continued parent engagement, creating brand identity and communication tools, using multiple languages and avoiding redundancy in the questionnaires.

A commentary on the healthcare transition policy landscape for youth with disabilities or chronic health conditions, the need for an inclusive and equitable approach, and recommendations for change in Canada.

There is a growing number of youth with healthcare needs such as disabilities or chronic health conditions who require lifelong care. In Canada, transfer to the adult healthcare system typically occurs at age 18 and is set by policy regardless of whether youth and their families are ready. When the transition to adult services is suboptimal, youth may experience detrimental gaps in healthcare resulting in increased visits to the emergency department and poor healthcare outcomes. Despite the critical need to support youth with disabilities and their families to transition to the adult healthcare system, there is limited legislation to ensure a successful transfer or to mandate transition preparation in Canada. This advocacy and policy planning work was conducted in partnership with the Patient and Family Advisory Council (PFAC) within the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities (BBD) Project and the CHILD-BRIGHT Policy Hub. Together, we identified the need to synthesize and better understand existing policies about transition from pediatric to adult healthcare, and to recommend solutions to improve healthcare access and equity as Canadian youth with disabilities become adults. In this perspective paper, we will report on a dialogue with key informants and make recommendations for change in healthcare transition policies at the healthcare/community, provincial and/or territorial, and/or national levels.

Patient, Caregiver, and Clinician Participation in Prioritization of Research Questions in Pediatric Hospital Medicine.

Importance: The research agenda in pediatric hospital medicine has seldom considered the perspectives of young people, parents and caregivers, and health care professionals. Their perspectives may be useful in identifying questions on topics for research. Objective: To prioritize unanswered research questions in pediatric hospital medicine from the perspectives of young people, parents/caregivers, and health care professionals. Design, Setting, and Participants: Between August 4, 2020, and August 19, 2021, two online surveys and a virtual workshop were conducted, using modified Delphi technique and nominal group technique. Young people, parents/caregivers, and health care professionals with experiences in pediatric hospital medicine in Canada were included. Interventions: The established James Lind Alliance Priority Setting Partnership method was used. In phase 1, a survey collected unanswered questions regarding pediatric hospital medicine via 3 open-ended questions. Survey responses were used to develop summary questions that went through an evidence-checking process. Unanswered questions were brought to a phase 2 interim prioritization survey. The top 10 unanswered research questions in pediatric hospital medicine were established at the final priority setting workshop. Main Outcomes and Measures: Survey responses, top 10 research questions. Results: The phase 1 survey was completed by 188 participants (148 of 167 [89%] females; 17 of 167 [10%] males; mean [SD] age, 39.5 [12.4] years) and generated 495 unanswered research questions and comments, of which 58 were deemed out of scope. The remaining 437 responses were grouped into themes (eg, communication, shared decision-making, health service delivery, and health service management) and then refined to 75 unanswered research questions. Of these 75, only 4 questions had sufficient evidence. To make the number of questions in phase 2 manageable, 21 questions submitted by only 1 respondent were eliminated. Fifty unanswered research questions were included in the phase 2 survey, which was completed by 201 participants (165 of 186 [89%] females; 19 of 186 [10%] males; mean [SD] age, 40.0 [11.0] years). A short list of 16 questions-the top 10 questions from patient partners (youths, parents/caregivers) and clinicians-was presented at the final priority setting workshop and the top 10 questions were prioritized. The top 10 questions focused on the care of special inpatient populations (eg, children with medical complexity), communication, shared decision-making, support strategies in the hospital, mental health supports, shortening length of stay, and supporting Indigenous patients, parents/caregivers, and families. Conclusions and Relevance: This patient-oriented pediatric hospital medicine priority setting partnership identified the most important unanswered research questions focused on the care of children in the hospital. These questions provide a possible roadmap for research on areas deemed important to young people, parents/caregivers, and clinicians.

Depressive Symptoms among Patients with Diabetes in Qatar: Frequency and Potential Determinants.

Background: Diabetes is a highly prevalent chronic disease that is associated with major complications. Findings regarding risk of depression among patients with diabetes are controversial. This study aimed to determine the prevalence and determinants of depressive symptoms among Qatari patients with type 2 diabetes. Methods: This cross-sectional study was based on Qatar Biobank (QBB) data of 2448 Qatari adults with diabetes aged 21-60 years old. Data regarding age, gender, education, income, body mass index (BMI), medication use, glycated hemoglobin (HbA1c) were retrieved. Patients' responses to the Patient Health Questionnaire-9 (PHQ-9) were also obtained. Data analyses was performed using STATA 16, and statistical significance was considered at a p-value of <0.05. Results: Of the 2448 participants, 15.4% (n = 378) had self-reported depressive symptoms. Depressive symptoms were frequent among females (69.6%), smokers (15.9%), and participants with a higher level of education (47.1%). Average age of participants who reported depressive symptoms was significantly less that among participants without depressive symptoms (44.8 vs. 52.9 years). Qatari women with diabetes seem to be at higher risk of depression when compared to men (OR = 1.819, 95% CI: 1.42-2.33); The odds of reporting depressive symptoms were 35% higher among patients with more advanced educational qualifications (OR = 1.351, 95% CI: 1.00, 1.82). Smokers were twice as likely to report depressive symptoms as their non-smoking counterparts. There was no significant relationship between depression and poor glycemic control, physical activity, BMI, or insulin use. Conclusions: In summary, the study results suggest that several sociodemographic factors, such as age, gender, and level of education were associated with the risk of depressive symptoms among Qataris with diabetes.

Intermittent vs Continuous Pulse Oximetry in Hospitalized Infants With Stabilized Bronchiolitis: A Randomized Clinical Trial.

Importance: There is low level of evidence and substantial practice variation regarding the use of intermittent or continuous monitoring in infants hospitalized with bronchiolitis. Objective: To compare the effect of intermittent vs continuous pulse oximetry on clinical outcomes. Design, Setting, and Participants: This multicenter, pragmatic randomized clinical trial included infants 4 weeks to 24 months of age who were hospitalized with bronchiolitis from November 1, 2016, to May 31, 2019, with or without supplemental oxygen after stabilization at community and children's hospitals in Ontario, Canada. Interventions: Intermittent (every 4 hours, n = 114) or continuous (n = 115) pulse oximetry, using an oxygen saturation target of 90% or higher. Main Outcomes and Measures: The primary outcome was length of hospital stay from randomization to discharge. Secondary outcomes included length of stay from inpatient unit admission to discharge and outcomes measured from randomization: medical interventions, safety (intensive care unit transfer and revisits), parent anxiety and workdays missed, and nursing satisfaction. Results: Among 229 infants enrolled (median [IQR] age, 4.0 [2.2-8.5] months; 136 [59.4%] male; 101 [44.1%] from community hospital sites), the median length of hospital stay from randomization to discharge was 27.6 hours (interquartile range [IQR], 18.8-49.6 hours) in the intermittent group and 25.4 hours (IQR, 18.3-47.6 hours) in the continuous group (difference of medians, 2.2 hours; 95% CI, -1.9 to 6.3 hours; P = .17). No significant differences were observed between the intermittent and continuous groups in the median length of stay from inpatient unit admission to discharge: 49.1 (IQR, 37.2-87.0) hours vs 46.0 (IQR, 32.5-73.8) hours (P = .13) or in frequencies or durations of hospital interventions, such as oxygen supplementation initiation: 4 of 114 (3.5%) vs. 9 of 115 (7.8%) (P = .16) and median duration of oxygen supplementation: 20.6 (IQR, 7.6-46.1) hours vs. 21.4 (11.6-52.9) hours (P = .66). Similarly, there were no significant differences in frequencies of intensive care unit transfer: 1 of 114 (0.9%) vs 2 of 115 (2.7%) (P = .76); readmission to hospital: 3 of 114 (2.6%) in the intermittent group vs 4 of 115 (3.5%) in the continuous group (P > .99); parent anxiety: mean (SD) parent anxiety score, 2.9 (0.9) in the intermittent group vs 2.8 (0.9) in the continuous group (P = .40); or parent workdays missed: median workdays missed, 1.5 (IQR, 0.5-3.0) vs 1.5 (IQR, 0.5-2.5) (P = .36). Mean (SD) nursing satisfaction with monitoring was significantly greater in the intermittent group: 8.6 (1.7) vs 7.1 (2.8) of 10 workdays; the mean difference was 1.5 (95% CI, 0.9-2.2; P < .001). Conclusions and Relevance: In this randomized clinical trial, among infants hospitalized with stabilized bronchiolitis with and without hypoxia and managed using an oxygen saturation target of 90% or higher, clinical outcomes, including length of hospital stay and safety, were similar with intermittent vs continuous pulse oximetry. Nursing satisfaction was greater with intermittent monitoring. Given that other important clinical practice considerations favor less intense monitoring, these findings support the standard use of intermittent pulse oximetry in stable infants hospitalized with bronchiolitis. Trial Registration: ClinicalTrials.gov Identifier: NCT02947204.