Parents' experiences of their children's medical journeys with tracheostomies: A Focus Group Study.

Objectives: Children living with a tracheostomy have among the most complex medical care needs in Canada. The focus of this study was to gain a contemporary understanding of key aspects of these children's medical journeys. Methods: We conducted a qualitative constructivist grounded theory study using semi-structured focus groups with parents whose children are living in the community with a tracheostomy. Parents were recruited from the Stollery Children's Hospital Tracheostomy Clinic, which serves a geographically wide and diverse population. Results: Three focus groups were completed, including a total of 12 participants. Key themes leading up to tracheostomy related to contextual understanding, experiences of inclusion, and perceptions of proportionality. Parents discussed the preparedness for how a tracheostomy would affect their child, their own involvement in recovery, and the education needed for their child's medical care. Navigating hospital units related to inconsistencies in care, accommodations of families' needs, and confidence in care received. Finally, living in the community was the focus of much of the participants' discussions including coping with system-related issues, limited homecare and medical support, cost of care, and connections with the broader community of parents of children with complex medical needs. All themes encircled the family's deeply felt responsibility to care for their child. Conclusions: From both patient- and family-centered care perspectives, there exist individual and systemic issues related to the care delivery for children with a tracheostomy. It is in particular in the community where there is a severe deficiency of support afforded to these children and their families.

Positive Airway Pressure and Metabolic Markers in Children With Obstructive Sleep Apnea.

BACKGROUND: Increasing evidence suggests an association between childhood obstructive sleep apnea (OSA) and metabolic syndrome, with more research available on the potential impacts of positive airway pressure (PAP) on metabolic markers in children. The purpose of this systematic review is to provide a systematic synthesis of the evidence on the effect of PAP use on metabolic markers in children with OSA. METHODS: A search strategy with terms for "OSA" and metabolic markers in pediatrics was run to systematically assess 5 databases until August 26, 2022. Two reviewers independently screened eligible articles, extracted data, and conducted quality appraisal. Meta-analysis was done using random-effects models. Body mass index (BMI), glycemic, lipid, cardiovascular, and other metabolic and inflammatory markers were reported. RESULTS: Sixteen studies (N = 1,213) were included, 15 observational studies and 1 randomized controlled trial (RCT); most reported outcomes in children with obesity. Meta-analysis of 4 studies found no changes in BMI at median average follow-up of 12 months after PAP initiation. A reduction in heart rate and blood pressure parameters was demonstrated in several studies in children with OSA with and without obesity at a median average follow-up of 4.9 months after PAP initiation. Research in echocardiographic outcomes is limited, including one RCT in children with Down syndrome and OSA showing no changes in heart rate variability parameters. Evidence of improvements in glycemic and/or lipid control, liver enzymes, and inflammatory markers with PAP therapy is even more limited and of limited clinical importance. Risk of bias was moderate to critical and outcome evidence very low. CONCLUSIONS: Although evidence on effects of PAP on metabolic markers in children with OSA is encouraging, available literature is limited. Longitudinal studies are still required to further assess the long-term influence of PAP on metabolic and inflammatory markers, particularly in children with obesity.

Tracheostomy and long-term invasive ventilation decision-making in children: A scoping review.

An increasing number of children are surviving critical illnesses requiring tracheostomy/long-term ventilation (LTV). This scoping review seeks to collate the available evidence on decision-making for tracheostomy/LTV in children. Systematic searches of electronic databases and websites were conducted for articles and reports. Inclusion criteria included: (1) children 0-18 years old; (2) described use of tracheostomy or tracheostomy/LTV; and (3) information on recommendations for tracheostomy decision-making or decision-making experiences of family-caregivers or health care providers. Articles not written in English were excluded. Of the 4463 records identified through database search and other methods, a total of 84 articles, 2 dissertations, 1 book chapter, 3 consensus statement/society guidelines, and 8 pieces of grey literature were included. Main thematic domains identified were: (1) legal and moral standards for decision-making; (2) decision-making models, roles of decision-makers, and decisional aids towards a shared decision-making model; (3) experiences and perspectives of decision-makers; (4) health system and society considerations; and (5) conflict resolution and legal considerations. A high degree of uncertainty and complexity is involved in tracheostomy/LTV decision-making. There is a need for a standardized decision-support process that is consistent with a child's best interests and shared decision-making. Strategies for optimizing communication and mechanism for managing disputes are needed.

Facilitators and Barriers to the Implementation of BETTER WISE, a Chronic Disease and Prevention Intervention in Canada: A Qualitative Study.

The aim of the BETTER WISE intervention is to address cancer and chronic disease prevention and screening (CCDPS) and lifestyle risks in patients aged 40-65. The purpose of this qualitative study is to better understand facilitators and barriers to the implementation of the intervention. Patients were invited for a 1-h visit with a prevention practitioner (PP), a member of a primary care team, with specific skills in prevention, screening, and cancer survivorship. We collected and analyzed data from 48 key informant interviews and 17 focus groups conducted with 132 primary care providers and from 585 patient feedback forms. We analyzed all qualitative data using a constant comparative method informed by grounded theory and then employed the Consolidated Framework for Implementation Research (CFIR) in a second round of coding. The following key elements were identified: (1) Intervention characteristics-relative advantage and adaptability; (2) Outer setting-PPs compensating for increased patient needs and decreased resources; (3) Characteristics of individuals-PPs (patients and physicians described PPs as compassionate, knowledgeable, and helpful); (4) Inner setting-network and communication (collaboration and support in teams or lack thereof); and (5) Process-executing the implementation (pandemic-related issues hindered execution, but PPs adapted to challenges). This study identified key elements that facilitated or hindered the implementation of BETTER WISE. Despite the interruption caused by the COVID-19 pandemic, the BETTER WISE intervention continued, driven by the PPs and their strong relationships with their patients, other primary care providers, and the BETTER WISE team.

Predictors of NIV-related adverse events in children using long-term noninvasive ventilation.

BACKGROUND AND OBJECTIVES: An increasing number of children with diverse medical conditions are using long-term noninvasive ventilation (NIV). This study examined the impact of demographic, clinical, and technology-related factors on long-term NIV adverse events in a large cohort of children using long-term NIV. METHODS: This was a multicenter retrospective review of all children who initiated long-term NIV in the province of Alberta, Canada, from January 2005 to September 2014, and followed until December 2015. Inclusion criteria were children who had used NIV for 3 months or more and had at least one follow-up visit with the NIV programs. RESULTS: We identified 507 children who initiated NIV at a median age of 7.5 (interquartile range: 8.6) years and 93% of them reported at least one NIV-related adverse event during the initial follow-up visit. Skin injury (20%) and unintentional air leaks (19%) were reported more frequently at the initial visit. Gastrointestinal symptoms, midface hypoplasia, increased drooling, aspiration and pneumothorax were rarely reported (<5%). Younger age and underlying conditions such as Down syndrome, achondroplasia, and Duchenne muscular dystrophy were early predictors of unintentional air leak. Younger age also predicted child sleep disruption in the short term and ongoing parental sleep disruption. Obesity was a risk factor for persistent nasal symptoms. Mask type was not a significant predictor for NIV-related short- or long-term complications. CONCLUSIONS: This study demonstrates that NIV-related complications are frequent. Appropriate mask-fitting and headgear adaptation, and a proactive approach to early detection may help to reduce adverse events.

Biosafety Regulatory Reviews and Leeway to Operate: Case Studies From Sub-Sahara Africa.

While modern biotechnology and, specifically, genetic modification are subject of debate in many parts of the world, an increasing number of countries in Sub-Sahara Africa are making important strides towards authorizing general releases of genetically modified (GM) crop varieties for use by farmers and agribusinesses. Obviously, the documented economic and environmental benefits from planting GM crops-based on a track record of over two decades-are a major driver in the decision-making process. Another key factor is the increasing alignment of biosafety regulatory policies with progressive agricultural and rural development policies in Africa, resulting in-compared to past experiences-greater emphasis on anticipated benefits rather than risks in biosafety regulatory reviews. In several cases, this has led to expedited reviews of GM crop release applications, either for confined field trials or general environmental release, taking experiences and data from other countries into account. Such regulatory approaches hold promise as the pipeline of relevant, pro-poor GM crop applications is expanding as are the opportunities provided by novel plant breeding techniques. This review article analyses the shifting policy context in select African economies, resulting in adoption of new agricultural technology, and novel regulatory approaches used in biosafety decision-making. Case studies will be presented for Ghana, Kenya, Malawi, Nigeria and Uganda to analyze challenges, distill lessons learned and to present general policy recommendations for emerging economies.