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.

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.

Parenting-related trauma exposure among parents of children with intellectual and developmental disorders: Development and validation of the Parenting Trauma Checklist.

Parents of children with intellectual and developmental disorders (IDDs) often encounter parenting-related traumatic events. Trauma exposure is a risk factor for mental health problems, including posttraumatic stress disorder (PTSD). Little is known regarding the types of traumatic events that parents commonly experience and how to best assess parenting-related trauma exposure. To address this gap, we developed the Parenting Trauma Checklist (PTC) and tested its psychometric properties. The PTC was created based on an extensive literature review and consultation with stakeholders, which led to the creation of a 17-item instrument. Participants (N = 424) were Canadian parents of children with IDDs who completed an online test battery that included the PTC and several questionnaires to assess PTSD symptoms, global mental and physical health, lifetime trauma exposure, and functional impairment, which were included to test the validity of the new instrument. The PTC demonstrated good construct validity. Ninety four percent of the sample reported parenting-related trauma exposure. Parents reported having experienced an average of 5.79 parenting-related traumatic events, with seeing their child undergo a medical procedure the most frequently endorsed event (68.6%). Experiencing more parenting-related traumatic events was positively associated with higher PTSD symptom levels, r = .35, p < .001. The PTC is a promising instrument that can be used to examine parenting-related trauma exposure. The measure can be used as a screening tool to detect parents' risk of traumatic stress disorders, evaluate traumatic experiences, and assess whether trauma-focused treatment is warranted.

Online narrative exposure therapy for parents of children with neurodevelopmental disabilities suffering from posttraumatic stress symptoms - study protocol of a randomized controlled trial.

Background: Parents of children with intellectual and neurodevelopmental disorders (IDD) often experience traumatic events in the care of their children. This leads to comparatively high numbers of mental health problems such as posttraumatic stress disorder (PTSD) in those parents. Intervention approaches for parents of children with IDD are scarce and many parents remain without support. Objective: This study aims to test the feasibility and efficacy of online Narrative Exposure Therapy (eNET) with parents of children with IDD. Methods: The study follows a randomized waitlist-control design. eNET is an exposure-based PTSD intervention and includes 8-12 90-minute sessions. All sessions will be conducted via video calls with trained paraprofessionals. We aim to include 50 parents, approximately 25 in the immediate intervention group and 25 in the waitlist group. Waitlist participants will receive the same intervention after a three-month wait period. All participants need to either fulfill full or subclinical PTSD symptoms according to DSM-5. Feasibility and efficacy of the intervention will be measured with pre, post, and 2 and 6 months follow-up surveys focusing on PTSD symptoms. Secondary outcomes include other health-related outcomes such as physical symptoms, depression symptoms, anxiety symptoms and functionality. Conclusions: The proposed study allows us to test the feasibility and efficacy of eNET in a sample of parents of children with IDD. There are so far no published studies on the evidence of eNET; this study is one of the first randomized controlled trials investigating the feasibility and efficacy of eNET and therefore will have implications on further research and practice.Clinical trial registration: NCT04385927Date and version identifier: 22 July 2021.

Antecedentes: Los padres de niños con trastornos intelectuales y del neurodesarrollo (TIND) experimentan con frecuencia eventos traumáticos durante el cuidado de sus hijos. Esto lleva a cifras relativamente altas de problemas de salud mental, tales como el trastorno de estrés postraumático (TEPT), en estos padres. Los abordajes para intervenir a los padres de niños con TIND son escasos y muchos padres continúan sin recibir soporte.Objetivo: El objetivo de este estudio es evaluar la viabilidad y la eficacia de la terapia de exposición narrativa en línea (eNET, por sus siglas en inglés) en padres de niños con TIND.Métodos: El estudio sigue un diseño aleatorizado con el grupo de control asignado a una lista de espera. La eNET es una intervención para el TEPT basada en exposición que incluye 8 a 12 sesiones de 90 minutos cada una. Todas las sesiones se realizarán mediante videollamadas con paraprofesionales entrenados. El objetivo es incluir a 50 padres, aproximadamente 25 en el grupo de intervención inmediata y 25 en el grupo de lista de espera. Los participantes en la lista de espera recibirán la misma intervención luego de un periodo de tres meses de espera. Todos los participantes deben cumplir los criterios para el TEPT según el DSM-5, ya sea de manera completa o subclínica. La viabilidad y la eficacia de la intervención se medirán con encuestas enfocadas en los síntomas del TEPT tomadas antes de la intención, inmediatamente luego de concluirla y a los 2 y a los 6 meses de seguimiento. Los resultados secundarios incluyen a aquellos relacionados con otros factores de la salud tales como síntomas físicos, síntomas de depresión, síntomas de ansiedad y funcionalidad.Conclusiones: El estudio propuesto nos permite evaluar la viabilidad y la eficacia del eNET en una muestra de padres de niños con TIND. Al momento, no existen estudios publicados sobre la evidencia de la eNET; este estudio es uno de los primeros ensayos aleatorizados que investigarán la viabilidad y la eficacia del eNET y, por tanto, tendrá implicancias para ulteriores investigaciones y para la práctica.Registro de ensayo clínico: NCT04385927Fecha e identificador de la versión: Julio 22 del 2021.

Building a culture of engagement at a research centre for childhood disability.

BACKGROUND: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. METHODS: This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. RESULTS: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family-researcher partnerships. CONCLUSION: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.

More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.

An audit of patients with a diagnosis of idiopathic pulmonary fibrosis (IPF) in Canterbury, New Zealand.

AIM: In light of new therapies and guidelines for the management of idiopathic pulmonary fibrosis (IPF), and in the absence of local epidemiological data, we sought to ascertain a current estimate of the prevalence of IPF in Canterbury and to audit local practices. METHODS: We performed a retrospective observational study of patients with IPF in Canterbury, New Zealand and the wider region. Patients were identified through a systematic search of hospital records and included if they were alive on 1 January 2017, had a histological or radiological diagnosis of usual interstitial pneumonia and clinical correlation consistent with a diagnosis of IPF. Clinical data was extracted from the clinical record. Follow up was complete until April 2018. RESULTS: Sixty-eight patients were included, median follow up 33 (14-49) months. Fifteen (22.1%) patients died during follow up, median survival 19 (6.5-54) months. Estimated prevalence of IPF was 6.53/100,000 persons. Six (8.8%) patients were discussed at the Interstitial lung disease multi-disciplinary meeting. Resting Sp02 and end-of-life discussions were documented in 44 (64.7%) and 19 (27.9%) patients respectively, while oxygen therapy was prescribed to 15 (22.7%). 20/36 (55.5%) patients eligible for pirfenidone were treated. Those treated were more likely to have undergone a six-minute walk test (5/20 vs 3/48, p<0.05) or have been hospitalised in the last 12 months (12/20 vs 3/48, p<0.05). 7/20 patients remained on treatment at the end of follow-up (eight discontinued, five deceased). CONCLUSION: In this study the estimated prevalence of IPF in the Canterbury region is 6.53/100,000 persons. Furthermore, we have identified limitations in local practice relevant for service development.

The 'ouR-HOPE' approach for ethics and communication about neonatal neurological injury.

Predicting neurological outcomes of neonates with acute brain injury is an essential component of shared decision-making, in order to guide the development of treatment goals and appropriate care plans. It can aid parents in imagining the child's future, and guide timely and ongoing treatment decisions, including shifting treatment goals and focusing on comfort care. However, numerous challenges have been reported with respect to evidence-based practices for prognostication such as biases about prognosis among clinicians. Additionally, the evaluation or appreciation of living with disability can differ, including the well-known disability paradox where patients self-report a good quality of life in spite of severe disability. Herein, we put forward a set of five practice principles captured in the "ouR-HOPE" approach (Reflection, Humility, Open-mindedness, Partnership, and Engagement) and related questions to encourage clinicians to self-assess their practice and engage with others in responding to these challenges. We hope that this proposal paves the way to greater discussion and attention to ethical aspects of communicating prognosis in the context of neonatal brain injury.

Evaluation of a patient care delivery model: system outcomes in acute cardiac care.

Hierarchical linear modelling was used to evaluate the influence of nurse staffing, work environment, and nurse and patient variables on system outcomes based on data collected in Canadian cardiac and cardiovascular inpatient units. Staffing utilization levels below 80% at the unit level and less overtime optimized perceived care quality and the completion of therapeutic interventions. Fewer patients per nurse improved perceived care quality and reduced longer-than-expected length of stay. Nurse reports of greater resource adequacy were associated with less absenteeism and fewer uncompleted or delayed nursing interventions. System outcomes were also influenced by patient characteristics (health, pre-operative education, nursing diagnoses); nurse characteristics (experience, expertise, health, effort-reward imbalance); and work-environment factors (autonomy, unit instability).

Evaluation of a patient care delivery model: patient outcomes in acute cardiac care.

PURPOSE: To evaluate the influence of nurse staffing and work environment variables on patient outcomes by testing a conceptual model. DESIGN: A prospective, correlational design with cross-sectional and longitudinal components was conducted in Canadian cardiac and cardiovascular care inpatient units. METHODS: Data were collected from multiple sources. Hierarchical linear modeling was used to examine relationships among variables. CONCLUSIONS: The findings indicate that patient outcomes are influenced not only by patient and nurse characteristics, but also by organizational staffing practices. Organizations that manage the complexity of work conditions and target staffing utilization levels between 80% and 88% at the unit level can optimize patient outcomes. CLINICAL RELEVANCE: Empirical validation of the model provides evidence to inform management decisions about hospital nurse staffing.

Decision making for nurse staffing: Canadian perspectives.

The effectiveness of methods for determining nurse staffing is unknown. Despite a great deal of interest in Canada, efforts conducted to date indicate that there is a lack of consensus on nurse staffing decision-making processes. This study explored nurse staffing decision-making processes, supports in place for nurses, nursing workload being experienced, and perceptions of nursing care and outcomes in Canada. Substantial information was provided from participants about the nurse staffing decision-making methods currently employed in Canada including frameworks for nurse staffing, nurse-to-patient ratios, workload measurement systems, and "gut" instinct. A number of key themes emerged from the study that can form the basis for policy and practice changes related to determining appropriate workload for nursing in Canada. These include the use of (a) staffing principles and frameworks, (b) nursing workload measurement systems, (c) nurse-to-patient ratios, and (d) the need for uptake of evidence related to nurse staffing.

Systematic review of evidence on the impact of nursing workload and staffing on establishing healthy work environments.

UNLABELLED: Background This systematic review set out to examine the impact, if any, of nursing workload and staffing on creating and maintaining healthy work environments. For the purposes of this review, the term 'healthy work environment' was defined as '. . . a practice setting that maximizes the health and well-being of nurses, quality patient outcomes and organizational performance'. This definition identifies nurse, patient and organisational outcomes as indicators of the establishment and maintenance of a healthy work environment. Objectives The review sought to determine the impact of: • Patient characteristics, nurse characteristics, system characteristics and system processes on workload, scheduling and concepts of productivity and utilisation • Workload, scheduling and concepts of productivity and utilisation on the quality of outcomes for clients, nurses and the system/organisation Search strategy The search strategy sought to find both published and unpublished studies and papers written in the English language. A three-step search strategy approach was used. An initial limited search of MEDLINE and CINAHL databases was undertaken to identify optimal search terms followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second extensive search using all identified keywords and index terms was then undertaken. The third step consisted of a search of the reference lists of all identified reports and articles for additional studies. Selection criteria Types of studies: This review considered research papers that addressed the appropriateness and effectiveness of workload and staffing concepts in fostering a healthy work environment in healthcare. The types of papers to be considered included: meta-analysis, randomised controlled trials, quasi-randomised controlled trials, cohort studies, case-control studies, descriptive studies and correlational studies. TYPES OF PARTICIPANTS: The review considered all participants involved or affected by workload and staffing concepts within the nursing workforce in a healthcare environment, including staff and patients. System and policy issues were also considered. Types of interventions: All workload and staffing strategies that impact on the work environment, patient and nurse outcomes were considered in this review. Types of outcome measures: Outcomes of interest were categorised into four groups: nursing staff outcomes, patient outcomes, organisational outcomes and system outcomes. Data collection and analysis Following assessment of methodological quality, data were extracted using data extraction tools based on the work of the Cochrane Collaboration and the Centre for Reviews and Dissemination. Statistical pooling was not possible and findings were presented in narrative form. Results Of the 2162 papers identified in the search, 171 were selected for full paper retrieval and assessed independently by two reviewers for methodological quality. A total of 40 papers were included in the review: one systematic review; one cohort study; and 38 correlational descriptive studies. Results were summarised in narrative form. The evidence suggests strong correlations between patient characteristics and work environments; and workload and staffing and the quality of outcomes for clients, nurses and the system/organisation. This gave rise to a number of recommendations for practice and for further research, such as: • A greater proportion of regulated staffing (i.e. registered nurses, enrolled nurses, practical or vocational nurses) is associated with improved outcomes related to the Functional Independence Measure score, the Short Form Health Survey (SF-36) vitality score, patient satisfaction with nursing care, patient adverse events (including atelectasis, decubitus ulcers, falls, pneumonia, postsurgical and treatment infection and urinary tract infections) • An increase in the number of registered nurse hours available is associated with improved patient outcomes in relation to falls, pneumonia, pressure ulcers, urinary tract infection, length of stay and postoperative infection rates.

Systematic review of evidence on the impact of nursing workload and staffing on establishing healthy work environments.

BACKGROUND: This systematic review set out to examine the impact, if any, of nursing workload and staffing on creating and maintaining healthy work environments. For the purposes of this review, the term 'healthy work environment' was defined as '… a practice setting that maximizes the health and well-being of nurses, quality patient outcomes and organizational performance'. This definition identifies nurse, patient and organisational outcomes as indicators of the establishment and maintenance of a healthy work environment. OBJECTIVES: The review sought to determine the impact of: SEARCH STRATEGY: The search strategy sought to find both published and unpublished studies and papers written in the English language. A three-step search strategy approach was used. An initial limited search of MEDLINE and CINAHL databases was undertaken to identify optimal search terms followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second extensive search using all identified keywords and index terms was then undertaken. The third step consisted of a search of the reference lists of all identified reports and articles for additional studies. SELECTION CRITERIA: Types of studies: This review considered research papers that addressed the appropriateness and effectiveness of workload and staffing concepts in fostering a healthy work environment in healthcare. The types of papers to be considered included: meta-analysis, randomised controlled trials, quasi-randomised controlled trials, cohort studies, case-control studies, descriptive studies and correlational studies. TYPES OF PARTICIPANTS: The review considered all participants involved or affected by workload and staffing concepts within the nursing workforce in a healthcare environment, including staff and patients. System and policy issues were also considered. Types of interventions: All workload and staffing strategies that impact on the work environment, patient and nurse outcomes were considered in this review. Types of outcome measures: Outcomes of interest were categorised into four groups: nursing staff outcomes, patient outcomes, organisational outcomes and system outcomes. DATA COLLECTION AND ANALYSIS: Following assessment of methodological quality, data were extracted using data extraction tools based on the work of the Cochrane Collaboration and the Centre for Reviews and Dissemination. Statistical pooling was not possible and findings were presented in narrative form. RESULTS: Of the 2162 papers identified in the search, 171 were selected for full paper retrieval and assessed independently by two reviewers for methodological quality. A total of 40 papers were included in the review: one systematic review; one cohort study; and 38 correlational descriptive studies. Results were summarised in narrative form. The evidence suggests strong correlations between patient characteristics and work environments; and workload and staffing and the quality of outcomes for clients, nurses and the system/organisation. This gave rise to a number of recommendations for practice and for further research, such as.

Work-related disability in Canadian nurses.

PURPOSE: To determine factors contributing to high registered nurse (RN) injury claim rates in Canadian hospitals. DESIGN: Cross-sectional study of secondary 1998-99 data for RNs (N = 8,044) in Ontario, Canada, linked at the hospital level (n = 127). METHODS: Descriptive statistics, correlations, and logistic regression analyses were conducted. RESULTS: The odds of a high RN lost-time claim rate increased by 70% for each quartile increase in the percentage of RNs reporting more than 1 hour of overtime per week. The odds of a high RN musculoskeletal lost-time claim rate decreased by 64% for every one unit increase in the hospital-level score on the nurse-physician relationship subscale. CONCLUSIONS: To retain and optimize scarce hospital nursing resources, strategies to address overtime, sick time, and nurse-physician relationships might provide fiscal and human benefits.

Beyond demographic change in human resources planning: an extended framework and application to nursing.

OBJECTIVES: To introduce health care production functions into human resources planning and to apply the approach to analysing the need for registered nurses in Ontario during a period of major reduction in inpatient capacity. METHODS: Measurement of changes in services delivered by acute care hospitals in Ontario between 1994/95 and 1998/99, and comparison with changes in the mix of human resources, non-human resources and patient needs. RESULTS: Inpatient episodes per nurse fell by almost 2%. At the same time the number of beds was cut by over 20%. As a result, the number of patients per bed increased by 12%. Allowing for severity, there was a 20% reduction in beds per episode and a 3.7% reduction in nurses per episode. CONCLUSIONS: The demands on nurses in acute care hospitals have increased as an increasing number of severity-adjusted episodes are served using fewer beds by a reduced number of nurses. Human resources planning traditionally only considers the effects of demographic change on the need for and supply of health care. Failure to recognize the variable and endogenous nature of other health care inputs leads to false impressions about the adequacy of existing supplies of human resources. Consideration of human resources in the context of the production function for health services provides a meaningful way of improving the effectiveness and efficiency of human resources planning.

Measuring the hospital practice environment: a Canadian context.

The primary purpose of this study is to document the psychometric properties of the revised Nursing Work Index (NWI-R) in the context of a large Canadian sample of registered nurses. A self-administered survey containing the NWI-R was completed by 17,965 registered nurses working in 415 hospitals in three Canadian provinces. Using exploratory principal components analysis, with a forced one-factor solution, the practice environment index was obtained. In addition, key assumptions were tested from previous work about the rationale for the aggregation of NWI-R responses. In the Canadian context the one-factor solution provides a parsimonious index of the practice environment of registered nurses working in acute care hospitals. Further work is needed to determine the predictive capability of this index and its relevance to cross-national organizational contexts.