RESUMEN
BACKGROUND: The transition from pediatric to adult care poses a significant health system-level challenge impeding the delivery of quality health services for youth with chronic health conditions. In Canada and globally, the transition to adult care is regarded as a top priority in adolescent health in need of readily applicable, adaptable, and relevant national metrics to evaluate and benchmark transition success across disease populations and clinical care settings. Unfortunately, existing literature fails to account for the lack of engagement from youth and caregivers in developing indicators, and its applicability across chronic conditions, primary care involvement, and health equity considerations. OBJECTIVE: Our proposed study aims to establish a consensus-driven set of quality indicators for the transition to adult care that are universally applicable across physical, developmental, and mental health conditions, clinical care settings, and health jurisdictions. METHODS: Using an integrated knowledge translation (iKT) approach, a panel comprising youth, caregivers, interdisciplinary health care providers, and health system leaders will be established to collaborate with our research team to ensure that the study methodology, materials, and knowledge dissemination are suitable and reflect the perspectives of youth and their families. We will then conduct an iterative 3-round Online Modified Delphi (OMD) study (n=160) to (1) compare and contrast the perspectives of youth, caregivers, health care providers, and health system leaders on quality indicators for transition; and (2) prioritize a key set of quality indicators for transition applicable across disease populations that are the most important, useful, and feasible in the Canadian context. Using the RAND/UCLA Appropriateness Method (RAM) multistage analytic approach, data from each panel and stakeholder group will be examined separately and compared to establish a key set of indicators endorsed by both panels. RESULTS: The study is funded by the Canadian Institutes of Health Research and Physicians Services Incorporated. CONCLUSIONS: This study will produce quality indicators to evaluate and inform action equitably to improve transition from pediatric to adult care for youth and their families in Canada. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/60860.
Asunto(s)
Técnica Delphi , Indicadores de Calidad de la Atención de Salud , Transición a la Atención de Adultos , Humanos , Transición a la Atención de Adultos/normas , Transición a la Atención de Adultos/organización & administración , Enfermedad Crónica/terapia , Adolescente , Canadá , Adulto Joven , Femenino , Niño , Masculino , AdultoRESUMEN
INTRODUCTION: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. METHODS AND ANALYSIS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. PROTOCOL REGISTRATION: https://osf.io/beqjr.
Asunto(s)
Cuidadores , Consenso , Participación del Paciente , Humanos , Investigación Biomédica Traslacional , Literatura de Revisión como Asunto , Proyectos de Investigación , Transición a la Atención de AdultosRESUMEN
The risk of viral infection during the COVID-19 pandemic has caused many hospitals to prohibit all patient visitors, including family caregivers for people with intellectual disabilities. Drawing on a postmodern, intersubjective view of the body, as well as my experience as the mother of a young adult with profound disabilities, I argue that caregiver knowledge while unconventional within the medical paradigm must be viewed as essential expertise. People with profound intellectual disabilities often have concurrent, complex medical issues that are complicated by their inability to self-advocate. Optimal care rests upon the ongoing presence and expertise of their primary caregiver. Medical professionals risk patient care by excluding the essential expertise of family caregivers at any time, and specifically during COVID-19.
Asunto(s)
COVID-19 , Discapacidad Intelectual , Cuidadores , Familia , Humanos , Pandemias , Adulto JovenRESUMEN
This is an ethnographic study exploring the role of emotion, images, and sacred texts in the spiritual reflection of non-chaplaincy health care professionals who offer spiritual care to their patients. Purposeful sampling of 20 health care professionals was employed. These non-chaplaincy professionals were interviewed and the researchers also kept field notes on the cultures in which they worked. Both interviews and field notes were transcribed and analyzed using the constant comparative method of data analysis. Findings indicate that emotion and images are the main doors that these professionals use to reflect spiritually on their practice of spiritual care. Sacred texts are the third door. Outcomes of the use of feelings and emotions in spiritual reflection are a deeper sense of peace, grounding and letting go, that is, transformation. Recommendations for collaboration with chaplains and further research are offered.
Asunto(s)
Antropología Cultural , Biblia , Emociones , Personal de Salud/psicología , Espiritualidad , Femenino , Humanos , Entrevistas como Asunto , Ontario , InvestigaciónRESUMEN
Necrotizing fasciitis (NF) is a rapidly spreading infection affecting the subcutaneous soft tissue. Because of its rapid progression and high mortality, it is essential that the patient is diagnosed and treated early. Over the past century and a half, little has changed in the mortality of this disease. The orthopaedic nurse is in a key position to assist with the early detection and treatment of NF. In the following article, the pathophysiology, early disease detection, diagnostic and treatment challenges, and appropriate nursing interventions will be discussed as it relates to improving the care of the patient with NF.