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Objectives Discharging a child home on long-term ventilation (LTV) via tracheostomy is complex and involves multiple healthcare providers across healthcare sectors. To date, there has been a paucity of data with respect to the experiences of families transitioning a child home on LTV. Our objective was to explore the perceptions of family caregivers (FCs) who have completed a newly developed LTV discharge pathway as they transitioned home. Methods We conducted 11 semi-structured interviews with FCs. Interviews focused on FC's experience with the training process, perception of competency from a knowledge and skill perspective, and opportunities for improvement. Interviews were audiotaped, transcribed verbatim, coded, and analyzed using an inductive thematic analysis approach. Results Eight mothers and three fathers of ten children participated. Six primary themes were identified: (1) making an informed decision, (2) transitioning to rehabilitation, (3) building capacity for self-care, (4) coordinating case management, (5) readying for discharge home, and (6) experiencing home care. Conclusion Overall, FCs felt that the preparation and transition support obtained through the application of a standardized LTV discharge pathway allowed successful attainment of new knowledge and skills necessary to care for their child with LTV at home.

IntroductionAccelerated by demands of the pandemic, Connected Care innovates across the paediatric health sector to leverage virtual solutions in addressing the pressing need for capacity building among home and community care (HCC) providers of children with medical complexity. Connected Care services supports a highly specialized and scarce paediatric home care workforce to deliver evidence-based nursing care when children transition from hospital to home. Family caregivers of children who depend on medical technology are integral to informing program development and guiding integration of new technologies and service lines. Aims Objectives Theory or MethodsVirtual care delivered by Connected Care aims to promote confidence and competence among home care providers of children with medical complexity through uptake of standardized, paediatric best practice. Connected Care engages hospital and home care administrators, interprofessional providers, and family advisors to inform integration of emerging technologies, testing of new virtual solutions, and usability of Connected Care’s information technology platforms. Services delivered by Connected Care from hospital to home undergo continuous quality improvement and include: 1) nurse led- 24/7 eConsultative services, 2) virtual simulation-based nursing education, and 3) cross-sector interprofessional virtual visits. Highlights or Results or Key FindingsConnected Care’s virtual community of practice has grown to include >800 homecare providers from >50 homecare organizations. In 2021, Connected Care will deliver >1000 paediatric virtual education sessions, across highly-accessible virtual platforms. The development of virtual simulation-based training modules for paediatric home ventilation have received very positive feedback among partners who describe appreciating the opportunity to practice their skills remotely. This year, Connected Care technologies will support remote access to >400 eConsultations and >1,500 self-directed resources. Consult types from homecare nurses vary with the majority reflecting their questions about medical technology trouble shooting. Real-time feedback indicates homecare nurses are highly satisfied with the eConsultation service giving it ‘thumbs up’ 99% of the time. Growth has been rapid in conduct of post- discharge virtual visits. In 2021, Connected Care will deliver >600 Virtual Visits bringing together hospital providers, family caregivers and homecare providers. ConclusionsDemand for Connected Care continues to build, aligned with recovery of paediatric homecare workforce and transition care gaps heightened through and beyond the pandemic. Experience with implementation of technologies linking hospital to home and community signal a high rate of acceptance and usability among diverse end-users across the sector. Implications for applicability/transferability sustainability and limitations Connected Care is well positioned to innovate in the use of cutting edge technologies to promote system integration. Leveraging partnerships and sharing resources will promote best practice and be scaled to build capacity in delivery of paediatric home care across expanding partnerships and geographies.

Pediatric nursing expertise in home care requires continuous development and maintenance of competencies. Through the pandemic, practice of essential "hands-on" skills was enabled by delivery of training mannequins from hospital to home care and a shift to virtual education. Learners (n = 57) included family caregivers of children with medical complexity and nurses new to home care. Evaluation informed iterative design of the service and signalled "Connected Care on the Go!" as desirable (100% highly satisfied), feasible (100% easily implemented) and viable. Now a sustainable service, this nurse-led innovation promotes partnership across leaders, sectors and geographies to address specialized training needs in pediatric home care.

Objective: To evaluate the immediate and sustained knowledge retention and sense of self-efficacy of homecare nurses following completion of a standardized competency-based tracheostomy education course. Safe discharge of children requiring tracheostomy with or without ventilation relies on the competence of homecare nurses. Study Design: Pragmatic, randomized controlled trial of 44 homecare nurses. Participants were randomized into the intervention group (n=21), which received the tracheostomy course, or the control group (n=23), which received an enterostomy and vascular access course. Multiple-choice question (MCQ) knowledge assessments and self-efficacy questionnaires were administered to both groups pre-course and post-course at 6 week, 3 month, 6 month, and 12 month follow-ups. Results: Twenty participants in the intervention group and 19 in the control group were included. Four withdrew from the study and two crossed over from the control into the intervention arm. The change in mean self-efficacy scores (total score = 100) was significantly higher in the intervention group than in the control group at 6 weeks (intervention (mean ± SD): 18.6±14.5; control: 6.6±20.4; p=0.04) and 3 months (intervention: 19.6±14.2; control: 5.2±17.0; p=0.007), and trended higher at 6 months (intervention: 18.0±14.5; control: 6.9±24.1; p=0.1) and 12 months (intervention: 16.9±15.0; control: 16.8±20.5; p=1.0). The change in mean MCQ assessment scores (total score = 20) trended higher in the intervention group than in the control group at 6 weeks (intervention (mean ± SD): 1.8±2.2; control: 1.6, ±2.9; p=0.8). Conclusions: Homecare nurses who attended the tracheostomy course demonstrated a higher sense of self-efficacy at long-term follow-up.

Objectives: Discharging a child home on long term ventilation (LTV) via tracheostomy is complex and involves multiple healthcare providers across healthcare sectors. To date, patient and family feedback of a newly developed LTV discharge pathway has been anecdotal. Our objective was to explore the perceptions of family caregivers (FCs) that have completed the LTV pathway to home with respect to their: (1) experience with transitions across the pathway (2) perceptions of competency attainment and, (3) viewed opportunities for improvement. Methods: We conducted 11 semi structured interviews with FCs. Interviews focused on FCs experience with the training process, perception of competency from a knowledge and skill perspective and opportunities for improvement. Interviews were audiotaped, transcribed verbatim, coded and analyzed using an inductive thematic analysis approach. Results: Eight mothers and 3 fathers of 10 children participated. Six primary themes were identified: 1) making an informed decision, 2) transitioning to rehabilitation, 3) building capacity for self-care, 4) coordinating case management, 5) readying for discharge home and, 6) experiencing home care. Conclusion: Overall, FCs felt that the preparation and transition support obtained through the application of a standardized LTV discharge pathway allowed successful attainment of new knowledge and skills necessary to care for their child with LTV at home.

This section will review the available literature regarding the experience and outcomes of family caregivers of children requiring home mechanical ventilation (HMV), with an aim of providing Canadi...

ObjectivesFamily caregivers of children who depend on medical technology (CMT) provide highly skilled care up to 24 hours per day. Sleep disruption places family caregivers at risk for poor health and related outcomes that threaten their long-term caregiving capacity. Few studies exist that have measured sleep in family caregivers, and most have relied entirely on subjective measures.MethodsIn a prospective cohort study, family caregivers of CMT (n=42) and caregivers of healthy children (n=43) were recruited. Actigraphy data and a concurrent sleep diary were collected for 6 days/7 nights. Measures of sleep quality, depression, sleepiness, fatigue and quality of life were also administered.ResultsFamily caregivers of CMT averaged fewer hours of sleep per night (mean (SD)) (6.56 ± 1.4 vs 7.21 ± 0.6, p=0.02) of poorer quality (7.75 ± 2.9 vs 5.45 ± 2.8, p<0.01) than the control group. Three times as many family caregivers of CMT scored in the range for significant depressive symptomatology (12(33%) vs 4(10%), p=0.01) and experienced excessive daytime sleepiness (16(38%) vs 5(12%), p<0.01). Fatigue was also more problematic among family caregivers of CMT (22.12 ± 9.1 vs 17.44 ± 9.0, p=0.02).ConclusionsFamily caregivers of CMT are at risk of acute and chronic sleep deprivation, psychological distress and impaired daytime function that may threaten their capacity for sustained caregiving. Family caregivers of CMT may be important targets for screening for sleep disorders and the development of novel sleep-promoting interventions.

Increasingly, children with respiratory conditions who are dependent on medical technology (e.g. ventilators and tracheostomies) are cared for at home by family caregivers who are at risk for significant health, financial and social burdens. In many jurisdictions, access to quality respite is varied and often the availability of regulated (nursing) providers is insufficient. Rather than go without, some families have secured alternative and unregulated providers to supplement formal home care systems. The purpose of this study was to explore the experiences of family caregivers of children dependent on respiratory technologies who have used unregulated providers for in-home respite care. Through an interpretative description approach, data was gathered from 20 semi-structured parent interviews and analysed using constant comparative analysis. Four themes emerged from the data, which were conceptualized as both opportunities and tensions that parents experienced with both unregulated and regulated home care providers: finding the right fit for the child and family; trusting the provider is everything; using unregulated providers offers unique advantages; and accepting that regulated and unregulated care present challenges. Findings signal that unregulated providers play a pivotal role in supporting parents of children who are dependent on respiratory technologies. Implications for practice, policy and future research initiatives are discussed.

Policy to support informal caregivers is a critical health policy issue in Canada. Lessons may be learned from the perspectives and experience in the child health field with applicability for all cared-for persons and their informal caregivers. Familycentred care addresses the centrality of the family caregiver in the design and delivery of health services. A life course approach focuses on key periods of transition and downstream effects facing caregivers over their lifetime. The medical home model where care delivery is more coordinated offers potential direct cost savings for both family caregivers and the healthcare system. Models of pediatric home care that focus on promoting caregiver capacity and integration of unregulated providers show the promise of being acceptable and sustainable solutions to increasing demands for caregiver respite. Finally, a number of assumptions that are somewhat unique to the pediatric caregiver experience are explored and/or challenged. These lessons and assumptions may provide insight for policymakers in the development of systems and supports for all cared-for persons and their caregivers in Canada.

Over the last 30 to 40 years, improvements in technology, as well as changing clinical practice regarding the appropriateness of long-term ventilation in patients with “non-curable” disorders, have resulted in increasing numbers of children surviving what were previously considered fatal conditions. This has come but at the expense of requiring ongoing, long-term prolonged mechanical ventilation (both invasive and noninvasive). Although there are many publications pertaining to specific aspects of home mechanical ventilation (HMV) in children, there are few comprehensive guidelines that bring together all of the current literature. In 2011 the Canadian Thoracic Society HMV Guideline Committee published a review of the available English literature on topics related to HMV in adults, and completed a detailed guideline that will help standardize and improve the assessment and management of individuals requiring noninvasive or invasive HMV. This current document is intended to be a companion to the 2011 guidelines, concentrating on the issues that are either unique to children on HMV (individuals under 18 years of age), or where common pediatric practice diverges significantly from that employed in adults on long-term home ventilation. As with the adult guidelines,1 this document provides a disease-specific review of illnesses associated with the necessity for long-term ventilation in children, including children with chronic lung disease, spinal muscle atrophy, muscular dystrophies, kyphoscoliosis, obesity hypoventilation syndrome, and central hypoventilation syndromes. It also covers important common themes such as airway clearance, the ethics of initiation of long-term ventilation in individuals unable to give consent, the process of transition to home and to adult centers, and the impact, both financial, as well as social, that this may have on the child's families and caregivers. The guidelines have been extensively reviewed by international experts, allied health professionals and target audiences. They will be updated on a regular basis to incorporate any new information.

Background Integrated care has important implications for children with medical complexity (CMC) who rely on care and service delivery involving multiple providers in different places over time. Most studies describing complex care programmes focus on the effectiveness of care co-ordination rather than the process of system integration. This pilot study explores the implementation process of the Integrated Complex Care Model: a voluntary partnership between acute, rehabilitative and community care aimed at system integration through a key worker model to improve care co-ordination for CMC. Methods This descriptive study used qualitative analyses and syntheses to explore the process of inter-organizational collaboration under ‘real-life’ circumstances. Multiple methods and sources of data were gathered to support triangulation in understanding of enablers and barriers to model implementation. Forty hours of meeting minutes and administrative databases housing patient records were reviewed. Baseline demographic information was available for 23 families, including child health-related quality of life and healthcare utilization. A subset of 12 parental caregivers and 21 additional key informants participated in individual interviews or focus groups. Findings are presented using King and Meyer’s description of system integration and care co-ordination. Results Model enablers included dedication, timing, leadership and electronic care plan use/ communication among key workers, families and health providers. Barriers included assumptions about partner organizations, differing organizational structures and client information systems, constrained project resources and limited engagement of primary care. Parents perceived an electronic care plan as a facilitator of timely and effective care for CMC across multiple settings. Conclusions At a systems level, the integrated model fostered collaboration between partner organizations. At a family level, development of inter-organizational management structures and communication platforms; provision of adequate resourcing; and increased engagement of primary care may enable high level organizational integration aimed at improved care co-ordination for CMC. bs_bs_banner

Objective Health related quality of life (HRQL) of children using medical technology at home is largely unknown. Our aim was to examine the HRQL in children on long-term ventilation at home (LTHV) in comparison to a cohort using an enterostomy tube. Study Design Participants were divided into three groups: 1) LTHV without an enterostomy tube (LTHV cohort); 2) Enterostomy tube (GT cohort); 3) LTHV with an enterostomy tube (LTHV+GT cohort). Caregivers of children ≥ 5 years and followed at SickKids, Toronto, Canada, completed three questionnaires: Health Utilities Index 2/3 (HUI2/3), Caregiver Priorities Caregiver Health Index (CPCHILD), and the Paediatric Quality of Life Inventory (PedsQL). The primary outcome was the difference in utility (HUI2/3) scores between the cohorts. Results One hundred and nineteen children were enrolled; 47 in the LTHV cohort, 44 in the GT cohort, and 28 in the LTHV+GT cohort. In univariate analysis, HUI2 mean (SE) scores were lowest for the GT cohort, 0.4 (0.04) followed by the LTHV+GT, 0.42 (0.05) and then the LTHV cohort, 0.7 (0.04), p = 0.001. A similar trend was seen for the HUI3 mean (SE) scores: GT cohort, 0.1 (0.06), followed by the LTHV +GT cohort, 0.2 (0.08) and then the LTHV cohort, 0.5 (0.06), p = 0.0001. Technology cohort, nursing hours and the severity of health care needs predicted HRQL as measured by the HUI2/3. Conclusion The HRQL of these children is low. Children on LTHV had higher HRQL than children using enterostomy tubes. Further work is needed to identify modifiable factors that can improve HRQL.

This study evaluated a dyadic peer support pilot intervention for parents of technology-assisted children with chronic lung disease. These medically-fragile children, living at home in the primary care of their parents, require continuous or intermittent assistance from technological support such as home oxygen, respiratory or cardiac monitors and/or mechanical ventilators. The intervention consisted of matching parents with similar caregiving responsibilities, in order to reciprocally engage in parent-to-parent support. Results identified mixed outcomes based on quantitative and qualitative methods. Participants conveyed benefits and limitations of this modality of peer-based support. They generally favoured peer support as a clinical resource for caregiving parents as the intervention offered a valued opportunity for mutual sharing with another parent who could understand the unique realities particular to caring for a medically-fragile child. Sharing daily experiences was reported to reduce isolation, increase knowledge, and provide an important sense of feeling understood. Challenges associated with peer support included scheduling difficulties and personality incompatibility. Recommendations for program development in clinical settings are described.

Purpose Society relies on family caregivers of children who depend on medical technology (e.g. mechanical ventilation), to provide highly skilled and vigilant care in their homes 24 hours per day. Sleep disturbance is among the most common complaints of these caregivers. The purpose of this review is to systematically examine studies reporting on sleep outcomes in family caregivers of technology dependent children. Methods All relevant databases were systematically searched: MEDLINE, EMBASE, PsycINFO and CINAHL. Given the heterogeneity of the studies, a qualitative analysis was completed and thus results of this review are presented as a narrative. Results Thirteen studies were retrieved that met eligibility criteria for inclusion. All of the studies reported on family caregivers of children with medical complexity living at home. Moreover, all of the studies relied entirely on self-report, not objective sleep measures. No intervention studies were found. Sleep disturbance was found to be common (51-100%) along with caregiver reports of poor sleep quality. Sleep quantity was seldom measured, but was found in the few studies that did, to be approximately 6 hours, or less than recommendations for optimal health and daytime function. Multiple caregiver, child and environmental factors were also identified that may negatively influence caregiver sleep, health and daytime function. Conclusion Findings of this review suggest that family caregivers of children with medical complexity who depend on medical technology achieve poor sleep quality and quantity that may place them at risk of the negative consequences of sleep deprivation. Recommendations for practice include that health care providers routinely assess for sleep disturbance in this vulnerable population. The review also suggests that studies using objective sleep measurement are needed to more fully characterize sleep and inform the development of targeted interventions to promote sleep in family caregivers of technology dependent children.

The delivery of ‘child and family-centred care’ (C&FCC), used interchangeably with ‘paediatric patient-centred care’, is consistent with the vision, mission and values of The Hospital for Sick Children (SickKids). As innovators in child health, SickKids leads and partners to improve the health of children provincially, nationally and internationally through the integration of clinical care, research and education. Institutional aims as outlined in the mission of the hospital include providing the best in complex and specialized C&FCC. Components of C&FCC are discussed and examples of innovation in C&FCC at SickKids are identified.

This chapter begins with an overview of paediatric patient-centred care, with a focus on child and family-centered care (CF however, it increasingly points to the positive impact of C&FCC on a range of outcomes and processes related to health, mental health, well-being, satisfaction and family functioning. There is emerging consensus about core elements that comprise C&FCC and, increasingly, the body of literature indicates that C&FCC merits ongoing implementation and evaluation in seeking effective paediatric healthcare.

Objectives To determine: (a) prevalence of clinically unsuspected nocturnal hypoventilation (NH) in a clinic population of children with progressive neuromuscular disease; (b) whether NH can be predicted from clinical/laboratory parameters; and (c) change over 1 year in pulmonary function decline, quality of life and attention in children with NH treated with non-invasive positive pressure ventilation (NPPV) compared with children without NH. Design Prospective cohort study. Setting Two tertiary-care paediatric neuromuscular clinics. Patients 46 children (6–17 years) with progressive neuromuscular disease without neurocognitive impairment or dystrophinopathy. Interventions Polysomnography, pulmonary function, manual muscle strength, quality of life (CHQ-PF50) and Conners questionnaires. Outcome measures (a) Prevalence of NH; (b) predictive value of surrogate clinical measures for NH; and (c) differences in change over 1 year in pulmonary function, muscle strength, quality of life and attention between children with and without NH. Results Prevalence of NH was 14.8%, 95% CI 8.0% to 25.7%. Maximal sensitivity and specificity for NH were achieved with thresholds of forced vital capacity

Background: Non-invasive positive pressure ventilation (NPPV) has a beneficial effect on nocturnal hypoventilation and hospitalisation rates in adults with static or slowly progressive neuromuscular disease and respiratory failure. Its role in children affected with similar disease processes, however, remains unclear. Aims: To investigate the impact of NPPV on hospitalisations and sleep related respiratory parameters in children with neuromuscular disease. Methods: Fifteen children (mean age 11.7, range 3.4–17.8 years) diagnosed with neuromuscular disease who had been started on nocturnal NPPV and had at least one year of follow up since the initiation of such therapy were studied. Patients served as their own controls and comparison was made of the years preceding and following the initiation of NPPV. Results: Children spent 85% fewer days in hospital (mean pre-NPPV 48.0 days, mean post-NPPV 7.0 days) and 68% less days in intensive care after initiation of NPPV (mean pre-NPPV 12.0 days, mean post-NPPV 3.9 days). Sleep study parameters including number of desaturations, apnoea-hypopnoea index and transcutaneous pCO 2 levels improved after initiation of NPPV. Conclusions: NPPV can decrease hospitalisations for children with neuromuscular disease and improves sleep related respiratory parameters. A prospective study is now needed to further delineate the role of NPPV in this population of children.

Providing integrated care for children with medical complexity in Canada is challenging as these children are, by definition, in need of coordinated care from disparate providers, organizations and funders across the continuum in order to optimize health outcomes. We describe the development of an inter-organizational team constructed as a unique tripartite partnership of an acute care hospital, a children's rehabilitation hospital and a home/community health organization focused on children who frequently use services across these three organizations. Model building and operationalization within the Canadian healthcare system is emphasized. Key challenges identified to date include communication and policy barriers as well as optimizing interactions with families; critical enablers have been alignment with policy trends in healthcare and inter-organizational commitment to integrate at the point of care. Considerations for policy developments supporting full integration across service sectors are raised. Early indicators of success include the enrolment of 34 clients and patients and the securing of funds to evaluate and expand the model to serve more children.