Programmes to support transitions in community care for children with complex care needs: a scoping review.

OBJECTIVE: This scoping review aimed to map the range of programmes in the literature to support children and youth with complex care needs and their families during transitions in care in the community. DESIGN: A scoping review of the literature. CONTEXT: This review included programmes that supported the transition in care to home and between settings in the community. DATA SOURCES: We implemented our strategy to search five databases: (1) PubMed; (2) CINAHL; (3) ERIC; (4) PyscINFO and (5) Social Work Abstracts. The search was last implemented on 29 April 2021. STUDY SELECTION: Our search results were imported into Covidence Systematic Review Software. First, two reviewers assessed titles and abstracts against our eligibility criteria. Relevant articles were then retrieved in full and reviewed by two reviewers for inclusion. Disagreements were resolved by a third reviewer. DATA EXTRACTION: Relevant data were extracted related to population, concept, context, methods and key findings pertinent to our review objective. RESULTS: A total of 2482 records were identified. After our two-stage screening process, a total of 27 articles were included for analysis. Articles ranged in the type of transitions being supported and target population. The most common transition reported was the hospital-to-home transition. Intervention components primarily consisted of care coordination using a teams-based approach. The most reported barriers and enablers to implementing these transition care programmes were related to physical opportunities. LIMITATIONS: Included articles were limited to English and French. CONCLUSIONS: This review identified important gaps within the literature, as well as areas for future consideration to ensure the effective development and implementation of programmes to support children and youth with complex care needs during transitions in care.

Strategies to adapt and implement health system guidelines and recommendations: a scoping review.

BACKGROUND: Evidence-based health system guidelines are pivotal tools to help outline the important financial, policy and service components recommended to achieve a sustainable and resilient health system. However, not all guidelines are readily translatable into practice and/or policy without effective and tailored implementation and adaptation techniques. This scoping review mapped the evidence related to the adaptation and implementation of health system guidelines in low- and middle-income countries. METHODS: We conducted a scoping review following the Joanna Briggs Institute methodology for scoping reviews. A search strategy was implemented in MEDLINE (Ovid), Embase, CINAHL, LILACS (VHL Regional Portal), and Web of Science databases in late August 2020. We also searched sources of grey literature and reference lists of potentially relevant reviews. All findings were reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. RESULTS: A total of 41 studies were included in the final set of papers. Common strategies were identified for adapting and implementing health system guidelines, related barriers and enablers, and indicators of success. The most common types of implementation strategies included education, clinical supervision, training and the formation of advisory groups. A paucity of reported information was also identified related to adaptation initiatives. Barriers to and enablers of implementation and adaptation were reported across studies, including the need for financial sustainability. Common approaches to evaluation were identified and included outcomes of interest at both the patient and health system level. CONCLUSIONS: The findings from this review suggest several themes in the literature and identify a need for future research to strengthen the evidence base for improving the implementation and adaptation of health system guidelines in low- and middle-income countries. The findings can serve as a future resource for researchers seeking to evaluate implementation and adaptation of health system guidelines. Our findings also suggest that more effort may be required across research, policy and practice sectors to support the adaptation and implementation of health system guidelines to local contexts and health system arrangements in low- and middle-income countries.

Children With Medical Complexity in the Canadian Maritimes: Protocol for a Mixed Methods Study.

BACKGROUND: Ongoing developments in the medical field have improved survival rates and long-term management of children with complex chronic health conditions. While the number of children with medical complexity is small, they use a significant amount of health resources across various health settings and sectors. Research to date exploring this pediatric population has relied primarily on quantitative or qualitative data alone, leaving significant gaps in our understanding of this population. OBJECTIVE: The objective of this research is to use health administrative and family-reported data to gain an in-depth understanding of patterns of health resource use and health care needs of children with medical complexity and their families in the Canadian Maritimes. METHODS: An explanatory sequential mixed methods design will be used to achieve our research objective. Phase 1 of this research will leverage the use of health administrative data to examine the prevalence and health service use of children with medical complexity. Phase 2 will use case study methods to collect multiple sources of family-reported data to generate a greater understanding of their experiences, health resource use, and health care needs. Two cases will be developed in each of the 3 provinces. Cases will be developed through semistructured interviews with families and their health care providers and health resource journaling. Findings will be triangulated from phase 1 and 2 using a joint display table to visually depict the convergence and divergence between the quantitative and qualitative findings. This triangulation will result in a comprehensive and in-depth understanding into the population of children with medical complexity. RESULTS: This study will be completed in May 2022. Findings from each phase of the research and integration of the two will be reported in full in 2022. CONCLUSIONS: There is a current disconnect between the Canadian health care system and the needs of children with medical complexity and their families. By combining health administrative and family-reported data, this study will unveil critical information about children with medical complexity and their families to more efficiently and effectively meet their health care needs. Results from this research will be the first step in designing patient-oriented health policies and programs to improve the health care experiences, health system use, and health outcomes of children with medical complexity and their families. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/33426.

Identifying children with medical complexity in administrative datasets in a Canadian context: study protocol.

INTRODUCTION: Children with medical complexity and their families are an important population of interest within the Canadian healthcare system. Despite representing less than 1% of the paediatric population, children with medical complexity require extensive care and account for one third of paediatric healthcare expenditures. Opportunities to conduct research to assess disparities in care and appropriate allocation of health resources relies on the ability to accurately identify this heterogeneous group of children. This study aims to better understand the population of children with medical complexity in the Canadian Maritimes, including Nova Scotia (NS), New Brunswick (NB) and Prince Edward Island (PEI). This will be achieved through three objectives: (1) Evaluate the performance of three algorithms to identify children with medical complexity in the Canadian Maritimes in administrative data; then using the 'best fit' algorithm (2) Estimate the prevalence of children with medical complexity in the Canadian Maritimes from 2003 to 2017 and (3) Describe patterns of healthcare utilisation for this cohort of children across the Canadian Maritimes. METHODS AND ANALYSIS: The research will be conducted in three phases. In Phase 1, an expert panel will codevelop a gold-standard definition of paediatric medical complexity relevant to the Canadian Maritime population. A two-gate validation process will then be conducted using NS data and the gold-standard definition to determine the 'best fit' algorithm. During phase 2 the 'best fit' algorithm will be applied to estimate the prevalence of children with medical complexity in NS, NB and PEI. Finally, in phase 3 will describe patterns of healthcare utilisation across the Canadian Maritimes. ETHICS AND DISSEMINATION: Ethics approval for this protocol was granted by the institutional research ethics board at the IWK Health Centre (REB # 1026245). A waiver of consent was approved. This study will use an integrated knowledge translation approach, where end users are involved in each stage of the project, which could increase uptake of the research into policy and practice. The findings of this research study will be submitted for publication and dissemination through conference presentations and with our end users.

Programmes to support paediatric to adult healthcare transitions for youth with complex care needs and their families: A scoping review.

BACKGROUND: An increasing number of children have complex care needs (CCN) that impact their health and cause limitations in their lives. More of these youth are transitioning from paediatric to adult healthcare due to complex conditions being increasingly associated with survival into adulthood. Typically, the transition process is plagued by barriers, which can lead to adverse health consequences. There is an increased need for transitional care interventions when moving from paediatric to adult healthcare. To date, literature associated with this process for youth with CCN and their families has not been systematically examined. OBJECTIVES: The objective of this scoping review is to map the range of programmes in the literature that support youth with CCN and their families as they transition from paediatric to adult healthcare. METHODS: The review was conducted in accordance with the Joanna Briggs Institute's methodology for scoping reviews. A search, last run in April 2021, located published articles in PubMed, CINAHL, ERIC, PsycINFO and Social Work Abstracts databases. RESULTS: The search yielded 1523 citations, of which 47 articles met the eligibility criteria. A summary of the article characteristics, programme characteristics and programme barriers and enablers is provided. Overall, articles reported on a variety of programmes that focused on supporting youth with various conditions, beginning in the early or late teenage years. Financial support and lack of training for care providers were the most common transition program barriers, whereas a dedicated transition coordinator, collaborative care, transition tools and interpersonal support were the most common enablers. The most common patient-level outcome reported was satisfaction. DISCUSSION: This review consolidates available information about interventions designed to support youth with CCN transitioning from paediatric to adult healthcare. The results will help to inform further research, as well as transition policy and practice advancement.

Exploring the health care utilization of children and youth in the care of child welfare: a retrospective matched cohort study.

BACKGROUND: Children and youth whose lives intersect with child welfare systems are amongst the most vulnerable paediatric populations. Despite the increased rates of chronic conditions, these children and youth often experience unmet health care needs. OBJECTIVES: To examine patterns of health care utilization from birth for children and youth in the care of a child welfare authority. METHODS: This retrospective matched cohort design study examined children/youth aged 0-18 who had visited a paediatric tertiary care facility from 2016 April 1 to 2017 March 31 and had "social worker" documented as their guardian. A control cohort was matched based on age and sex. Primary outcomes of interest included primary health care, emergency, outpatient, and inpatient visits. Visits for immunizations, physiological development, well-baby checks, mental health, and oral health were also examined. RESULTS: A total of 200 cases and 200 controls were included in our cohort. No statistically significant differences were found between primary care visits, well-baby checks, inpatient admissions, outpatient mental health visits, or immunizations for children in care in comparison to their controls. There was a significant difference in oral health visits, lack of physiological development, and emergency department visits for children in care when compared to their controls. CONCLUSIONS: Our study revealed disparities in health care utilization amongst children in the care of child welfare in comparison to those who are not, highlighting the need for improved practice, policy, and research initiatives. A collaborative data collection/sharing system is needed to identify and track the health care of this vulnerable population.

Children and youth whose lives intersect with child welfare systems are amongst the most vulnerable pediatric populations. Despite the increased rates of chronic health conditions, these children and youth often experience unmet health care needs. Using a retrospective matched cohort design, we sought to examine patterns of health care utilization from birth to age 18 for children and youth in the care of a child welfare authority in comparison to children/youth who were not in the care of child welfare. No statistically significant differences were found between primary care visits, well-baby checks, inpatient admissions, outpatient mental health visits, or immunizations for children in care when compared to their counterparts not in care. There was a significantly higher number of oral health visits, physiological development concerns, and emergency department visits for children in care when compared to their controls. Our study revealed differences in health care use amongst children in the care of a child welfare in comparison to those who are not, highlighting the need for improved practice, policy and research initiatives. A collaborative data collection and sharing system is needed to help accurately identify and track the health care use of this vulnerable population.

Programmes to support transitions in care for children and youth with complex care needs and their families: a scoping review protocol.

INTRODUCTION: Children and youth with complex care needs (CCNs) and their families experience many care transitions over their lifespan and are consequently vulnerable to the discontinuity or gaps in care that can occur during these transitions. Transitional care programmes, broadly defined as one or more intervention(s) or service(s) that aim to improve continuity of care, are increasingly being developed to address transitions in care for children and youth with CCNs. However, this literature has not yet been systematically examined at a comprehensive level. The purpose of this scoping review is to map the range of programmes that support transitions in care for children and youth with CCNs and their families during two phases of their lifespan: (1) up to the age of 19 years (not including their transition to adult healthcare) and (2) when transitioning from paediatric to adult healthcare. METHODS AND ANALYSIS: The Joanna Briggs Institute methodology for scoping reviews (ScR) will be used for the proposed scoping review. ScR are a type of knowledge synthesis that are useful for addressing exploratory research questions that aim to map key concepts and types of evidence on a topic and can be used to organise what is known about the phenomena. A preliminary search of PubMed was conducted in December 2018. ETHICS AND DISSEMINATION: Ethical approval is not required where this study is a review of the published and publicly reported literature. The research team's advisory council will develop a research dissemination strategy with goals, target audiences, expertise/leadership, resources and deadlines to maximise project outputs. The end-of-grant activities will be used to raise awareness, promote action and inform future research, policy and practice on this topic.

Codesigning discharge communication interventions with healthcare providers, youth and parents for emergency practice settings: EDUCATE study protocol.

INTRODUCTION: Discharge communication is an important aspect of patient care but frequently has shortcomings in emergency departments (EDs). In a paediatric context, youth or parents with young children often leave the ED with minimal opportunity to ask questions or to ensure comprehension of important information. Strategies for improving discharge communication have primarily targeted patients and/or parents, although neither group has been engaged in intervention design or implementation. Furthermore, ED healthcare providers (HCPs), important actors in discharge communication practice, are rarely consulted regarding intervention design decisions. We will generate evidence to enhance discharge communication by engaging youth, parents and HCPs in the codesign of ED discharge communication strategies (EDUCATE) for asthma and minor head injury. METHODS AND ANALYSIS: This mixed methods study will take place at two academic paediatric EDs in Canada. The study will occur in two phases: (A) codesign and refinement of the intervention prototypes; and (B) usability testing of the prototypes. During the first phase, two codesign teams (one for each condition) will follow a series of structured design meetings based on the Behavior Change Wheel to develop the EDUCATE interventions. Each codesign team (composed of youth, parents, HCPs and study researchers) will collaborate to identify priority target behaviours and acceptable components to include in the interventions. During the second phase, we will conduct usability testing in two EDs with a group of youth, parents and HCPs to refine the interventions. Two cycles of usability testing will be conducted with intervention refinement occurring at the end of each cycle. ETHICS AND DISSEMINATION: Informed consent will be obtained from all participants. Ethics approval for this study has been obtained from the Research Ethics Board, IWK Health Centre. Results from this study will form the basis of a future effectiveness implementation trial. Key findings will be presented at national and international conferences and published within peer-reviewed journals.

Improving transitions in care for children with complex and medically fragile needs: a mixed methods study.

BACKGROUND: Children with medical complexity are a small yet resource intensive population in the Canadian health care system. The process for discharging these children from hospital to home is not yet optimal. The overall goal of this project was to develop recommendations to be included in a provincial strategy to support transitions in care for children with complex and medically fragile needs. METHODS: A wide assortment of stakeholders participated in this mixed method, multiphase project. During Phase 1, data was gathered from a range of sources to document families' experiences transitioning from an inpatient hospital stay back to their home communities. In Phase 2, pediatricians, nurses, and health administrators participated in key stakeholder interviews to identify barriers and facilitators to a successful transition in care for children and families with complex care needs. A multi-sector consensus meeting was held during Phase 3 to discuss study findings and refine key recommendations for inclusion in a provincial strategy. RESULTS: Six case studies were developed involving children and families discharged home with a variety of complex care needs. Children ranged in age from 15 days to 9 years old. Nine telephone interviews were conducted in Phase 2 with pediatricians, nurses, and administrators from across the province. A variety of inter-institutional communication challenges were described as a major barrier to the transition process. A consistent message across all interviews was the need for improved coordination to facilitate transitions in care. The consensus meeting to review study findings included physicians, nurses, paramedics, senior administrators, and policy analysts from different health and government sectors and resulted in six recommendations for inclusion in a provincial strategy. CONCLUSIONS: This project identified policy and practice gaps that currently exist related to transitions in care for children with complex and medically fragile needs and their families. Our collaborative patient-centred approach to understanding how children and families currently navigate transitions in care provided a foundation for developing recommendations for a provincial wide strategy.

Respite care for children and youth with complex care needs and their families: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to identify and characterize interventions, programs or models used to deliver respite care services to children and youth with complex care needs and their families. INTRODUCTION: Many children with complex chronic conditions require multifaceted home management plans to address their medical, social and emotional needs. The provision of this care often falls on the parents or primary guardians. Respite care is one strategy to provide families with a break from the demands of caring for a child with complex care needs; however, families commonly face barriers to obtaining respite care services. INCLUSION CRITERIA: This scoping review will consider papers that include children and youth (0-25 years of age, in any location, with complex care needs, medical complexity or complex chronic conditions) and their families. Any interventions, programs or models aimed at delivering respite care services to this population will be included. Studies focusing on support provided at the end of life will be excluded. Only studies published in English will be included. No date limits will be set. METHODS: A search will be conducted in five databases, as well as multiple sources of unpublished literature. The text words contained in the titles and abstracts of relevant articles and index terms will be used to develop a full search strategy. All potentially relevant papers will be retrieved in full. A pre-defined data extraction tool developed by the reviewers will be used, and extracted data will be presented in tabular form accompanied by a narrative summary.

Caring for Children Who Are Technology-Dependent and Their Families: The Application of Watson's Caring Science to Guide Nursing Practice.

Advancements in the medical field have resulted in an increased number of children with complex chronic conditions that may depend on technology to sustain or optimize life. Given that nurses provide substantial physical and emotional care for these children and families during their frequent hospitalizations, the development of an authentic caring relationship is imperative. A critical review of the literature examining the experiences and unmet care needs of this population was carried out and analyzed using Watson's Caring Science to explore how nurses can create an authentic caring relationship and environment for children who are technology-dependent and their families.

Nurse-led Discharge in Pediatric Care: A Scoping Review.

PROBLEM: Patients and caregivers frequently report feeling ill-prepared during the transition from hospital to home. Given the privileged position nurses occupy within the health care setting, they are often an appropriate health care professional to lead the discharge process. We aimed to map what is currently known about nurse-led/facilitated discharge programs, interventions, models, or frameworks for the pediatric population. ELIGIBILITY CRITERIA: We conducted a scoping review following the Joanna Briggs Institute Methodology. Published literature targeting children 0-18 years old being discharged from acute care to home and describing a nurse leading the discharge planning/process was included. SAMPLE: A search strategy was developed and implemented in four electronic databases; CINAHL, MEDLINE, Embase, and Web of Science. We also hand searched three high impact journals and reviewed reference lists of relevant articles. This search resulted in 1485 records. Based on our eligibility criteria, 9 articles were included in this review. Two independent reviewers screened each eligible article and extracted relevant information. RESULTS: Terminology and program structure varied greatly across included studies. Critical appraisal revealed a lack of high quality research designs. CONCLUSIONS: We identified a paucity of nurse-led/facilitated discharge programs evaluated within the pediatric population. The majority of studies were inadequately reported, leaving it difficult to identify development, implementation, and evaluation strategies. IMPLICATIONS: Given the positive outcomes reported across all articles included in our review, future empirical research is warranted to explore this role within nursing practice.

Strategies to support transitions from hospital to home for children with medical complexity: A scoping review.

BACKGROUND: Children with medical complexity constitute a small but resource-intensive subgroup of children with special health care needs. Their medical fragility and resource-intensive needs put them at greater risk for inadequate transitions from hospital to home-based care, and subsequent adverse outcomes and hospital re-admissions. OBJECTIVE: This scoping literature review was conducted to map empirically researched interventions, frameworks, programs or models that could inform or support the transition from hospital to home for children with medical complexity. DESIGN: We conducted a scoping review using the methodology outlined by the Joanna Briggs Institute. DATA SOURCES: In consultation with an experienced librarian, we searched PubMed, EMBASE and CINAHL for English-language articles published from the date of origin to February 2016. We also hand-searched four high impact journals and searched the reference lists of relevant articles. REVIEW METHODS: Two reviewers independently screened the literature results according to inclusion criteria. Empirically designed studies that targeted children <18years old who were specifically defined as medically complex or fragile and transitioning from acute care to home were included. Data were extracted using a predefined tool. Quality appraisal of the articles was conducted using the mixed methods appraisal tool (MMAT). Thematic analysis was carried out to identify existing patterns or trends in the included studies. RESULTS: Of the 2088 abstracts retrieved, 14 studies met the inclusion criteria. Following analysis, we identified three major categories of interventions: Comprehensive care plans (n=3), Complex Care Programs (n=8) and Integrated delivery models (n=3). The overall quality of included studies was moderate, with 21% (n=3) scoring 0.25, 29% (n=4) scoring 0.50, 43% (n=6) scoring 0.75, and 7% (n=1) scoring 1.0. CONCLUSIONS: In the absence of evidence-based guidelines to ensure adequate transitions from hospital to home for children with medical complexity, identification of potential models to support this transition is imperative. We identified interventions, frameworks, models and programs in the literature that might inform the development of such guidelines; however, there is a need for consensus around the definition for children with medical complexity and the limited number of these studies and lack of high quality of evidence signals the need for further research to improve the transition from hospital to home and ultimately, improve patient and family outcomes.