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Introduction: Oral sucrose is repeatedly administered to neonates in the neonatal intensive care unit (NICU) to treat pain from commonly performed procedures; however, there is limited evidence on its long-term cumulative effect on neurodevelopment. We examined the association between total sucrose volumes administered to preterm neonates for pain mitigation in the NICU and their neurodevelopment at 18 months of corrected age (CA)., Methods: A prospective longitudinal single-arm observational study that enrolled hospitalised preterm neonates <32 weeks of gestational age at birth and <10 days of life was conducted in four level III NICUs in Canada. Neonates received 0.1 mL of 24% sucrose 2 min prior to all commonly performed painful procedures during their NICU stay. Neurodevelopment was assessed at 18 months of CA using the Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III). Multiple neonatal and maternal factors known to affect development were adjusted for in the generalised linear model analysis., Results: 172 preterm neonates were enrolled and 118 were included in the analysis at 18 months of CA. The total mean sucrose volume administered/neonate/NICU stay was 5.96 (±5.6) mL, and the mean Bayley-III composite scores were: cognitive 91 (±17), language 86 (±18) and motor 88 (±18). There was no association between Bayley-III scores and the total sucrose volume: cognitive (p=0.57), language (p=0.42) and motor (p=0.70)., Conclusion: Cumulative sucrose exposure for repeated procedural pain in preterm neonates was neither associated with a delay in neurodevelopment nor neuroprotective effects at 18 months of CA. If sucrose is used, we suggest the minimally effective dose combined with other non-pharmacological interventions with demonstrated effectiveness such as skin-to-skin contact, non-nutritive sucking, facilitated tucking and swaddling., Trial Registration Number: NCT02725814., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

We are excited to share the promise and innovation of Strengths-Based Nursing and Healthcare (SBNH) Leadership (SBNH-L). As a mindset, SBNH-L is more than a management philosophy. It is an intentional and purposeful value-driven approach that puts humans at the forefront and helps leaders honour, mobilize and cultivate the strengths that reside in individuals and teams. SBNH leaders focus on people, systems and solutions, cultivating relationships and being transformative in the service of others and the system at large. An SBNH leader is one who leans into change with an open mindset, who thinks about the ecosystems we are in and who acts to make a positive difference and address challenges across the healthcare sector as we emerge from the pandemic period. What we need right now is authentic leadership to foster positive change, influence work environments and support much-needed recovery and healing. In short, this issue of the Canadian Journal of Nursing Leadership has arrived at the right time. You will find articles that offer valuable exemplars of how SBNH-L has guided advancements in nursing administration and leadership, practice, teaching and research., (Copyright © 2024 Longwoods Publishing.)

The nursing context in pediatric rehabilitation is that of caring for children with disabilities and complex developmental differences and health conditions in an ever-changing and demanding environment. Rehabilitation nurses aim to continuously advance nursing leadership, practice, education and research to meet service needs. Strengths-Based Nursing and Healthcare (SBNH) is a philosophy and value-driven approach that aligns with and enables the advancement of strengths-based rehabilitation nursing and family-centred care. This paper describes the leadership approach undertaken to implement SBNH in a Canadian pediatric rehabilitation hospital context over a 10-year period. We will share what we did and what we learned., (Copyright © 2024 Longwoods Publishing.)

Nursing leadership is essential to improving nurse retention, their well-being, the quality of nursing care and patient safety. As healthcare leaders become increasingly aware of Strengths-Based Nursing and Healthcare Leadership (SBNH-L), we dialogued with Canadian nurse leaders to understand their views on this leadership approach. Five senior nursing leaders representing practice, academic and health policy contexts were interviewed. Five themes emerged: connections, opportunities for growth, humanism, optimism and hope for the future. Leaders shared that SBNH-L is a valuable, timely leadership approach that will promote system-wide health and healing post-pandemic. A call to action is offered to advance adoption of this essential leadership approach., (Copyright © 2024 Longwoods Publishing.)

The nurse practitioner role is strongly suited to meet the needs of children with complex developmental conditions in pediatric rehabilitation settings as they have a unique combination of clinical expertise. To meet the increasing demands in a large Canadian pediatric rehabilitation hospital, the NP role was implemented in several clinical program settings to improve access to care. This paper describes the contributions of NPs to nine specialized inpatient and outpatient programs in NP-led, collaborative NP and physician or interagency care team models of practice. The initial challenges of role implementation and implications for NP practice, research and leadership are discussed., (Copyright © 2023 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.)

Although sucrose is widely administered to hospitalized infants for single painful procedures, total sucrose volume during the entire neonatal intensive care unit (NICU) stay and associated adverse events are unknown. In a longitudinal observation study, we aimed to quantify and contextualize sucrose administration during the NICU stay. Specifically, we investigated the frequency, nature, and severity of painful procedures; proportion of procedures where neonates received sucrose; total volume of sucrose administered for painful procedures; and incidence and type of adverse events. Neonates <32 weeks gestational age at birth and <10 days of life were recruited from four Canadian tertiary NICUs. Daily chart reviews of documented painful procedures, sucrose administration, and any associated adverse events were undertaken. One hundred sixty-eight neonates underwent a total of 9093 skin-breaking procedures (mean 54.1 [±65.2] procedures/neonate or 1.1 [±0.9] procedures/day/neonate) during an average NICU stay of 45.9 (±31.4) days. Pain severity was recorded for 5399/9093 (59.4%) of the painful procedures; the majority (5051 [93.5%]) were heel lances of moderate pain intensity. Sucrose was administered for 7839/9093 (86.2%) of painful procedures. The total average sucrose volume was 5.5 (±5.4) mL/neonate or 0.11 (±0.08) mL/neonate/day. Infants experienced an average of 7.9 (±12.7) minor adverse events associated with pain and/or sucrose administration that resolved without intervention. The total number of painful procedures, sucrose volume, and incidence of adverse events throughout the NICU stay were described addressing an important knowledge gap in neonatal pain. These data provide a baseline for examining the association between total sucrose volume during NICU stay and research on longer-term behavioral and neurodevelopmental outcomes., Competing Interests: The authors have no conflicts of interest to declare., (© 2023 The Authors. Paediatric and Neonatal Pain published by John Wiley & Sons Ltd.)

Purpose: Parents of children with autism spectrum disorder often report poorer sleep compared to parents of typically developing children. When parents do not obtain enough quality sleep, functioning may be compromised placing the onus of care on already stressed parents. However, improving sleep duration may not improve sleep quality and is not always feasible. This study aimed to measure sleep quality in parents of children with autism spectrum disorder, determine if stress and children's sleep are associated with sleep quality and whether resources, appraisals, and coping moderate these relationships., Materials and Methods: Multivariable regression was used to determine the effects of stress and children's sleep problems on sleep quality and test modifying effects., Results: Mean (SD) Pittsburgh Sleep Quality Index scores was 8.81 (3.76), with 77.6% of parents scoring above the clinical cut-off. Mean (SD) Children's Sleep Habits Questionnaire scores was 54.03 (8.32), with 96.3% of parents rating their child's sleep above the clinical cut-off. Children's sleep was the only significant predictor and none of the expected effect modifiers were significant., Conclusion: Children's sleep may be an important target to improve parent sleep quality but requires systematic assessment with interventional research. Implications for rehabilitationBoth parents and their 4-10-year-old children with ASD experience high levels of sleep disturbances.Clinicians can start the conversation early with parents about their children's sleep by providing them with information to increase awareness and recognize healthy sleep habits in their children.Clinicians are important in the assessment, management, and evaluation of pediatric sleep problems, which may have significant spillover effects on parents of children with ASD.There is a need for more resources and training to be available to clinicians to assess children and their parents for sleep problems, which could extend beyond the assessment of sleep and consider parent's daytime functioning and mental health.

Background: The neonatal intensive care unit (NICU) is a complex care environment, with the NICU patient population among the most vulnerable in a hospital setting. Adolescent parents are a unique group within the broader NICU parent population and admission of their infant to the NICU contributes to an already complex situation as adolescent pregnancy and parenting is often associated with a range of psychosocial challenges. How the NICU care context influences care provision for adolescent parents is a significant gap in the NICU parenting and support discourse. Therefore, this study aimed to explore health and social care providers' perspectives of the NICU care context and how providers perceive the context as influencing the experiences of adolescent parents in the NICU., Methods: This was a qualitative, interpretive description study design. In-depth interviews were conducted with providers, including nurses and social workers, caring for adolescent parents in the NICU. Data was collected between December 2019 and November 2020. Data were analyzed concurrently with data collection. Constant comparison, analytic memos, and iterative diagramming techniques were used to challenge developing analytic patterns., Results: Providers (n = 23) described how the unit context influenced care provision as well as experiences for adolescent parents. We learned that having a baby in the NICU was perceived by providers as a traumatic experience for parents - impacting attachment, parenting confidence and competence, and mental health. Environmental factors - such as privacy and time - and perceptions that adolescent parents are treated differently in the NICU were also seen as influencing this overall experience., Conclusions: Providers involved in the care of adolescent parents in the neonatal intensive care unit described the distinctiveness of this group within the broader parent population and how quality of care may be impacted by contextual factors as well as experiences of age-related stigma. Further understanding of NICU experiences from the parents' perspectives are warranted. Findings highlight opportunities for strengthened interprofessional collaboration and trauma- and violence-informed care strategies within the neonatal intensive care environment to mitigate the potential negative influence of this experience and improve care for adolescent parents., (© 2023. The Author(s).)

Background: Loss of function variants and whole gene deletions of ZNF462 has been associated with a novel phenotype of developmental delay/intellectual disability and distinctive facial features. Over two dozen cases have been reported to date and the condition is now known as Weiss-Kruszka syndrome (OMIM# 618619). There are several older reports in the literature and DECIPER detailing individuals with interstitial deletions of 9q31 involving the ZNF462 gene. Many of the characteristic facial features described in these microdeletion cases are similar to those who have been diagnosed with Weiss-Kruszka syndrome., Methods: We describe three additional patients with overlapping 9q31 deletions and compare the phenotypes of the microdeletion cases reported in the literature to Weiss-Kruszka syndrome., Results: Phenotypic overlap was observed between patients with 9q31 deletions and Weiss-Kruszka syndrome. Several additional features were noted in 9q31 deletion patients, including hearing loss, small head circumference, palate abnormalities and short stature., Conclusions: The common region of overlap of microdeletion cases implicates ZNF462 as the main driver of the recognizable 9q31 microdeletion phenotype. The observation of additional features in patients with 9q31 microdeletions that are not reported in Weiss-Kruszka syndrome further suggests that other genes from the 9q31 region likely act synergistically with ZNF462 to affect phenotypic expression., (© 2022 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals LLC.)

Goal: To determine the analgesic effectiveness of repeated sucrose administration for skin-breaking (SB) procedures over the Neonatal Intensive Care Unit (NICU) hospitalization of preterm infants., Methods: Longitudinal observational study, conducted in four level III Canadian NICUs. Eligible infants were <32 weeks gestational age at birth, and <10 days of life at enrollment. Infants received 24% sucrose (0.12 ml) prior to all painful procedures. The Premature Infant Pain Profile - Revised (PIPP-R) was used at 30 and 60 seconds after a medically-required SB procedure as soon as possible after enrollment and weekly up to three additional times for scheduled procedures., Results: 172 infants (57.3% male, gestational age 28.35 (±2.31) weeks) were included. The mean 30 s PIPP-R scores were 6.11 (±3.68), 5.76 (±3.41), 6.48 (±3.67), and 6.81 (±3.69) respectively; there were no statistically significant interactions of study site by time ( p  = 0.31) or over time ( p  = 0.15). At 60 s, mean PIPP-R scores were 6.05 (±4.09), 5.74 (±3.67), 6.19 (±3.7), and 5.99 (±3.76) respectively; there were no study site by time interactions ( p  = 0.14) or differences over time ( p  = 0.52). There was a statistically significant site difference in the effectiveness of sucrose at 30 and 60 seconds ( p  < 0.01)., Conclusions: Consistently low PIPP-R scores following a skin-breaking procedure indicated that the analgesic effectiveness of the minimal dose of sucrose was sustained over time in the NICU. Further research is required to determine the optimal combination of sucrose and other pain management strategies to improve clinical practice and the impact of consistent use of repeated use of sucrose on neurodevelopment., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (© 2023 Bueno, Ballantyne, Campbell-Yeo, Estabrooks, Gibbins, Harrison, McNair, Riahi, Squires, Synnes, Taddio, Victor, Yamada and Stevens.)

The Institute for In Vitro Sciences (IIVS) is sponsoring a series of workshops to identify, discuss and develop recommendations for optimal scientific and technical approaches for conducting in vitro assays, to assess potential toxicity within and across tobacco and various next generation nicotine and tobacco products (NGPs), including heated tobacco products (HTPs) and electronic nicotine delivery systems (ENDS). The third workshop (24-26 February 2020) summarised the key challenges and made recommendations concerning appropriate methods of test article generation and cell exposure from combustible cigarettes, HTPs and ENDS. Expert speakers provided their research, perspectives and recommendations for the three basic types of tobacco-related test articles: i) pad-collected material (PCM); ii) gas vapour phase (GVP); and iii) whole smoke/aerosol. These three types of samples can be tested individually, or the PCM and GVP can be combined. Whole smoke/aerosol can be bubbled through media or applied directly to cells at the air-liquid interface. Summaries of the speaker presentations and the recommendations developed by the workgroup are presented. Following discussion, the workshop concluded the following: that there needs to be greater standardisation in aerosol generation and collection processes; that methods for testing the NGPs need to be developed and/or optimised, since simply mirroring cigarette smoke testing approaches may be insufficient; that understanding and quantitating the applied dose is fundamental to the interpretation of data and conclusions from each study; and that whole smoke/aerosol approaches must be contextualised with regard to key information, including appropriate experimental controls, environmental conditioning, analytical monitoring, verification and performance criteria.

Background: Parents of children with disabilities often report stress, depression, and anxiety. This review identified screening tools and practices that pediatric rehabilitation service providers can use to screen the mental health of parents of children with disabilities., Methods: An interdisciplinary team and patient partner completed the systematic review in which 16,015 articles were screened and 473 articles were included to i) identify mental health tools that were used with parents, ii) determine the clinical utility of frequently used tools, iii) examine the screening practices used in pediatric rehabilitation contexts., Results: 115 screening tools were used to screen parents' mental health. The Parenting Stress Index was used most often. Seven studies reported screening in order to recommend further assessment or supports. Increased awareness, training, resources, and infrastructure are needed to support parents' mental health., Discussion: Evidence is needed to guide mental health screening practices in pediatric rehabilitation and determine their effectiveness.

Pregnancy and parenting in adolescence and the transition home following the hospitalization of an infant in the neonatal intensive care unit (NICU) are two relatively complex phenomena; and whilst each have been consistently explored within the relevant literature, little is understood about the care required when they intersect. Using interpretive description methodology to guide our exploration, we conducted semi-structured interviews with 23 expert providers caring for adolescent parents involved in NICU-to-home transitions to describe this process in their practice. Findings suggest that supporting successful NICU-to-home transitions for adolescent parents relied strongly on understanding the impact of the NICU experience, establishing therapeutic relationships and facilitating supportive partnerships between the NICU and parents as well as the NICU and supportive services post-discharge. Findings highlight the opportunity for more integrated models of care within the NICU and extending into the community to address the complex biopsychosocial care needs of this parent population.