Pediatric home mechanical ventilation: A Canadian Thoracic Society clinical practice guideline executive summary

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\u27s 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

Sleep Disturbance in Family Caregivers of Children who Depend on Medical Technology Compared to Family Caregivers of Healthy Children: The CARE to SLEEP Study

Background/Rationale: Society relies on family caregivers of children who depend on medical technology (e.g., home ventilation) to provide highly skilled and vigilant care up to 24 hours per day. Few studies exist that have measured sleep in family caregivers, and those that do have relied entirely on subjective measures. These data suggest that sleep disruption places family caregivers at risk for poor health and related outcomes that may impair their daytime function and long-term capacity for caregiving. Objectives/Research Questions: The primary aim of this study was to compare sleep and related outcomes in family caregivers of children who depend on medical technology to outcomes in family caregivers of healthy children.Methods: In a prospective cohort study (balanced per child's age), 42 family caregivers of children who depend on medical technology from a tertiary-level paediatric hospital and 43 controls from community-based paediatric clinics were recruited. Actigraphy was used for 6 days and 7 nights, and the Pittsburgh Sleep Quality Index (PSQI) was applied to collect sleep data. At home visits, sleep diaries were collected and measures of depression (CES-D), daytime sleepiness (ESS), fatigue (MAF), quality of life (SF-12TM), sleep hygiene (SHI), and child's sleep habits (CSHQ) were administered.Results: Family caregivers of children who depend on medical technology achieved 40 minutes less sleep per night (6.56 [1.4h] vs. 7.21 [0.6], p = .02), had more nocturnal awakenings (8.00 [3.9] vs.6.01 [3.7], p = .02), and had more sleep deprived (Ph.D

Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada

Objectives Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families’ respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings.Design Qualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.SettingManitoba, a western Canadian province.Participants Thirty-two families (including 38 parents and 13 siblings) of CYSHCN.Results We identified six themes surrounding challenges experienced by families’ in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges.Conclusions Through the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care

Parental Perceptions of Quality of Life in Children on Long-Term Ventilation at Home as Compared to Enterostomy Tubes.

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

Univariate analysis for each of the HRQL instruments: HUI2, HUI3, CPCHILD, and PedsQL.

<p>Univariate analysis for each of the HRQL instruments: HUI2, HUI3, CPCHILD, and PedsQL.</p

Mean scores (SE) for the HUI2 and HUI3 multiple regression models for variables with p-values determined using the F-test.

<p>Mean scores (SE) for the HUI2 and HUI3 multiple regression models for variables with p-values determined using the F-test.</p

Baseline Demographics of the Three Study Cohorts: Enterostomy tube (GT), Long-term home ventilation and enterostomy tube (LTHV+GT) and Long-term home ventilation (LTHV).

<p>Baseline Demographics of the Three Study Cohorts: Enterostomy tube (GT), Long-term home ventilation and enterostomy tube (LTHV+GT) and Long-term home ventilation (LTHV).</p

The Primary Medical Diagnosis by Technology Cohort.

<p>The Cells Indicate the Frequency of the Primary Medical Diagnosis by Technology Cohort.</p

HUI2 and HUI 3 single attribute results by cohort.

<p>Mean scores (SE) are presented.</p