Early identification and communication in cerebral palsy: Navigating a collaborative approach for neonatal follow-up programmes.

AIM: This article will provide a clinical case demonstrating the implementation of early identification and review the tools and findings and the diagnostic approach. We will review highlighted literature on the subject of communicating a diagnosis. While improved function is a critical goal, the process of communicating the diagnosis of CP can be challenging for both parents and providers. It aims to provide insights on the evidence supporting early identification and discusses strategies for effective communication of crucial information. METHODS: The article reviews the literature on communication of a diagnosis. RESULTS: Thirteen articles were identified relating to the communication of a diagnosis of CP and parent experience. We examine this evidence, leveraging the knowledge of an interdisciplinary team and incorporating feedback from parents. CONCLUSION: Strategies for effective communication include engagement with families, community therapy teams and all medical providers. Consistent, individualised, collaborative communication is critical. Awareness of ableism and use of balanced, value-neutral terminology is recommended.

Parental perspectives of outcomes following very preterm birth: Seeing the good, not just the bad.

AIM: To describe parental perspective on health and developmental outcomes of their preterm child in relation to level of neurodevelopmental impairment (NDI). METHODS: A parental survey about their children aged 15-36 months corrected age born ˂29 weeks' gestation investigated parental concerns and positive attributes. Parental responses in relation to their child's level of NDI were examined using Kruskal-Wallis and chi-square for trend tests. RESULTS: One hundred ninety-nine parental responses were obtained for 163 children, including 44% with NDI. Vast majority of parents reported their children were developing well with good physical health. All parents, irrespective of NDI, reported their children were happy and had a positive personality. Appreciation of social interactions was higher for parents of children without versus with NDI (96% vs. 87%, p = 0.039). Parents of children with NDI were more likely to express concerns than those without NDI. Overall, development was the most common area of concern (45%), followed by the child's future (40%) and physical health (35%). CONCLUSION: Parents of preterm children report many positive points and concerns, some of which are not examined in neonatal follow-up data. These parental perspectives could be used to inform parents of preterm infants, both antenatally and in the neonatal unit.

Growth and Neurodevelopmental Outcomes of Preterm Infants Born < 26 Weeks Gestation before and after Implementation of a Nutrition-Care Bundle.

BACKGROUND: This study aimed to assess the impact of a nutrition-care bundle on growth and neurodevelopmental outcomes of micro-preterm infants born in a level III neonatal intensive care unit (NICU) by two years corrected age. METHODS: A nutrition-care bundle emphasizing the prompt initiation of parenteral nutrition at birth, initiation of enteral feeds within 6 h after birth, and early addition of human milk fortifiers was implemented in 2015 for infants born < 26 weeks gestation. This before-and-after study evaluated growth and neurodevelopmental outcomes in infants born between 2012-2013 (before-nutrition-bundle, BNB) and 2016-2017 (after-nutrition-bundle, ANB). RESULTS: A total of 145 infants were included in the study. Infants in the ANB group (n = 73) were smaller (birthweight and gestational age), and there were more male infants and multiples included compared to the BNB group (n = 72). Enteral feeds and fortifiers started earlier in the ANB group. Growth velocity and weight z-score changes were similar in both groups during NICU stay and post-discharge. Systemic steroid use, but not cohort, was linked to lower Bayley scores across all domains. CONCLUSIONS: Implementing a nutrition-care bundle was not consistently associated with improved weight gain and neurodevelopmental outcomes in the micro-preterm infant population, possibly due to ongoing high-quality nutritional care by the clinical team.

NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families.

The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique language and culture. It is also the setting in which they are introduced to their child and parenthood for this child. This combination has been referred to as an emotional cauldron. The neonatal ethics literature mainly examines complex ethical dilemmas about withholding/drawing life sustaining interventions for fragile children. Rarely are everyday ethics or mundane ethics discussed. Microethics describe the mundane, discrete moments that occur between patients/families and clinicians. A key piece of these microethics is the language used to discuss patient care. Perception of prognoses, particularly around long-term neurodevelopmental outcome, is shaped with the language used. Despite this, clinicians in the NICU often have no specific training in the long-term neurodevelopment outcomes that they discuss. This paper focuses on the microethics of language used to discuss long-term neurodevelopmental outcomes, the developmental neuroscience behind language processing, and offers recommendations for more accurate and improved communication around long-term outcomes with families with critically ill neonates.

Understanding the Family Context: A Qualitative Descriptive Study of Parent and NICU Clinician Experiences and Perspectives.

Enabling individualized decision-making for patients requires an understanding of the family context (FC) by healthcare providers. The FC is everything that makes the family unique, from their names, preferred pronouns, family structure, cultural or religious beliefs, and family values. While there is an array of approaches for individual clinicians to incorporate the FC into practice, there is a paucity of literature guiding the process of collecting and integrating the FC into clinical care by multidisciplinary interprofessional teams. The purpose of this qualitative study is to explore the experience of families and Neonatal Intensive Care Unit (NICU) clinicians with information sharing around the FC. Our findings illustrate that there are parallel and overlapping experiences of sharing the FC for families and clinicians. Both groups describe the positive impact of sharing the FC on building and sustaining relationships and on personalization of care and personhood. The experience by families of revolving clinicians and the risks of miscommunication about the FC were noted as challenges to sharing the FC. Parents described the desire to control the narrative about their FC, while clinicians described seeking equal access to the FC to support the family in the best way possible related to their clinical role. Our study highlights how the quality of care is positively impacted by clinicians' appreciation of the FC and the complex relationship between a large multidisciplinary interprofessional team and the family in an intensive care unit, while also highlighting the difficulties in its practical application. Knowledge learned can be utilized to inform the development of processes to improve communication between families and clinicians.

The STEP Program-A Qualitative Study of the Supportive Therapeutic Excursion Program and Its Effect on Enabling Parental Self-Efficacy and Connectedness after the Stress-Experience of the NICU.

As a child is born, so are the parents with new roles assumed. Attachment is secured, and parents quickly become the experts in their child. With preterm birth, however, this quiet and essential period of discovery is interrupted. It is described as a traumatic and stressful experience. Programs that aim to address this focus on education and support. This qualitative study explores the effect on parents and staff of a novel and simple intervention of parents walking their baby in a stroller (Supportive Therapeutic Excursion Program, STEP). This study used a qualitative methodology that included 20 semi-structured interviews for content saturation to explore the experiences of parents and staff participating in the STEP program. We found an overall positive experience reported by both parents and nursing staff with STEP. Analysis revealed that as autonomy is fostered with parent education around transition to home, STEP brought a normalcy that was reported to bolster participating parents' self-efficacy and connectedness, two important elements for recovery from stressful situations. The potential impact of STEP can be far reaching because, although future research is needed, these data suggest that inexpensive programs that promote normalcy may enable self-efficacy and connectedness prior to hospital discharge.

The E-Nurture Project: A Hybrid Virtual Neonatal Follow Up Model for 2021.

Neonatal follow-up has long focused on a model of surveillance and identification of short-term outcomes. This model has long become outdated, with evidence documenting the need for longer follow-up with known school-based challenges and significant gaps in knowledge by educators. This article reviews the history of neonatal follow-up and demonstrates a novel approach to neonatal follow-up, built largely with a hybrid virtual platform, which then became essential with the declaration of the pandemic in 2020.

The assessment of general movements in term and late-preterm infants diagnosed with neonatal encephalopathy, as a predictive tool of cerebral palsy by 2 years of age-a scoping review.

BACKGROUND: The General Movements Assessment is a non-invasive and cost-effective tool with demonstrated reliability for identifying infants at risk for cerebral palsy. Early detection of cerebral palsy allows for the implementation of early intervention and is associated with better functional outcomes. No review to date has summarized the utility of the General Movements Assessment to predict cerebral palsy in term and late-preterm infants diagnosed with neonatal encephalopathy. METHODS: We conducted a scoping review involving infants born greater than or equal to 34 weeks gestational age to identify all available evidence and delineate research gaps. We extracted data on sensitivity, specificity, and positive and negative predictive values and described the strengths and limitations of the results. We searched five databases (MEDLINE, Embase, PsychINFO, Scopus, and CINAHL) and the General Movements Trust website. Two reviewers conducted all screening and data extraction independently. The articles were categorized according to key findings, and a critical appraisal was performed. RESULTS: Only three studies, a cohort and two case series, met all of the inclusion criteria. The total number of participants was 118. None of the final eligible studies included late-preterm neonates. All three studies reported on sensitivity, specificity, and positive predictive and negative predictive values. An abnormal General Movement Assessment at 3-5 months has a high specificity (84.6-98%) for cerebral palsy with a similarly high negative predictive value (84.6-98%) when it was normal. Absent fidgety movements, in particular, are highly specific (96%) for moderate to severe cerebral palsy and carry a high negative predictive value (98%) when normal. In the time period between term and 4-5 months post-term, any cramped synchronized movements had results of 100% sensitivity and variable results for specificity, positive predictive value, and negative predictive value. CONCLUSIONS: A normal General Movements Assessment at 3 months in a term high-risk infant is likely associated with a low risk for moderate/severe cerebral palsy. The finding of cramped synchronized General Movements is a strong predictor for the diagnosis of cerebral palsy by 2 years of age in the term population with neonatal encephalopathy. The deficit of high-quality research limits the applicability, and so the General Movements Assessment should not be used in isolation when assessing this population. SYSTEMATIC REVIEW REGISTRATION: Title registration with Joanna Briggs Institute. URL: http://joannabriggswebdev.org/research/registered_titles.aspx .

Neonates with Maternal Colonization of Carbapenemase-Producing, Carbapenem-Resistant Enterobacteriaceae: A Mini-Review and a Suggested Guide for Preventing Neonatal Infection.

Carbapenemase-producing, carbapenem-resistant Enterobacteriaceae (CP-CRE) are highly drug-resistant Gram-negative bacteria. They include New Delhi metallo-ß-lactamase (NDM)-producing carbapenemase (50.4% of all species in Ontario). Antibiotic challenges for resistant bacteria in neonates pose challenges of unknown dosing and side effects. We report two antenatally diagnosed CP-CRE colonization scenarios with the NDM 1 gene. The case involves extreme preterm twins who had worsening respiratory distress at birth requiring ventilator support, with the first twin also having cardiovascular instability. They were screened for CP-CRE, and a polymyxin antibiotic commenced. In the delivery room, neonatal intensive care unit (NICU) and the follow-up clinic, in collaboration with the interdisciplinary group, contact precautions and isolation procedures were instituted. None of the infants exhibited infection with CP-CRE. Consolidating knowledge with regard to CP-CRE and modifying human behavior associated with its spread can mitigate potential negative consequences. This relates to now and later, when travel and prolific human to human contact resumes, from endemic countries, after the current COVID-19 pandemic. Standardized efforts to curb the acquisition of this infection would be judicious given the challenges of treatment and continued emerging antibiotic resistance. Simple infection control measures involving contact precautions, staff education and parental cohorting can be useful and cost-effective in preventing transmission. Attention to NICU specific measures, including screening of at-risk mothers (invitro fertilization conception) and their probands, careful handling of breastmilk, judicious antibiotic choice and duration of treatment, is warranted. What does this study add? CP-CRE is a nosocomial infection with increasing incidence globally, and a serious threat to public health, making it likely that these cases will present with greater frequency to the NICU team. Only a few similar cases have been reported in the neonatal literature. Current published guidelines provide a framework for general hospital management. Still, they are not specific to the NICU experience and the need to manage the parents' exposure and the infants. This article provides a holistic framework for managing confirmed or suspected cases of CP-CRE from the antenatal care through the NICU and into the follow-up clinic targeted at preventing or containing the spread of CP-CRE.

Coached, Coordinated, Enhanced Neonatal Transition (CCENT): protocol for a multicentre pragmatic randomised controlled trial of transition-to-home support for parents of high-risk infants.

INTRODUCTION: Having an infant admitted to the neonatal intensive care unit (NICU) is associated with increased parental stress, anxiety and depression. Enhanced support for parents may decrease parental stress and improve subsequent parent and child outcomes. The Coached, Coordinated, Enhanced Neonatal Transition (CCENT) programme is a novel bundled intervention of psychosocial support delivered by a nurse navigator that includes Acceptance and Commitment Therapy-based coaching, care coordination and anticipatory education for parents of high-risk infants in the NICU through the first year at home. The primary objective is to evaluate the impact of the intervention on parent stress at 12 months. METHODS AND ANALYSIS: This is a multicentre pragmatic randomised controlled superiority trial with 1:1 allocation to the CCENT model versus control (standard neonatal follow-up). Parents of high-risk infants (n=236) will be recruited from seven NICUs across three Canadian provinces. Intervention participants are assigned a nurse navigator who will provide the intervention for 12 months. Outcomes are measured at baseline, 6 weeks, 4, 12 and 18 months. The primary outcome measure is the total score of the Parenting Stress Index Fourth Edition Short Form at 12 months. Secondary outcomes include parental mental health, empowerment and health-related quality of life for calculation of quality-adjusted life years (QALYs). A cost-effectiveness analysis will examine the incremental cost of CCENT versus usual care per QALY gained. Qualitative interviews will explore parent and healthcare provider experiences with the intervention. ETHICS AND DISSEMINATION: Research ethics approval was obtained from Clinical Trials Ontario, Children's Hospital of Eastern Ontario Research Ethics Board (REB), The Hospital for Sick Children REB, UBC Children's and Women's REB and McGill University Health Centre REB. Results will be shared with Canadian level III NICUs, neonatal follow-up programmes and academic forums. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov Registry (NCT03350243).

The general movements assessment in term and late-preterm infants diagnosed with neonatal encephalopathy, as a predictive tool of cerebral palsy by 2 years of age: a scoping review protocol.

BACKGROUND: Prediction of long-term neurodevelopmental outcomes remains an elusive goal for neonatology. Clinical and socioeconomic markers have not proven to be adequately reliable. The limitation in prognostication includes those term and late-preterm infants born with neonatal encephalopathy. The General Movements Assessment tool by Prechtl has demonstrated reliability for identifying infants at risk for neuromotor impairment. This tool is non-invasive and cost-effective. The purpose of this study is to identify the published literature on how this tool applies to the prediction of cerebral palsy in term and late-preterm infants diagnosed with neonatal encephalopathy and so detect the research gaps. METHODS: We will conduct a systematic scoping review for data on sensitivity, specificity, positive, and negative predictive value and describe the strengths and limitations of the results. This review will consider studies that included infants more than or equal to 34 + 0 weeks gestational age, diagnosed with neonatal encephalopathy, with a General Movements Assessment done between birth to six months of life and an assessment for cerebral palsy by at least 2 years of age. Experimental and quasi-experimental study designs including randomized controlled trials, non-randomized controlled trials, before and after studies, interrupted time-series studies and systematic reviews will be considered. Case reports, case series, case control, and cross-sectional studies will be included. Text, opinion papers, and animal studies will not be considered for inclusion in this scoping review as this is a highly specific and medical topic. Studies in the English language only will be considered. Studies published from at least 1970 will be included as this is around the time when the General Movements Assessment was first introduced in neonatology as a potential predictor of neuromotor outcomes. We will search five databases (MEDLINE, Embase, PsychINFO, Scopus, and CINAHL). Two reviewers will conduct all screening and data extraction independently. The articles will be categorized according to key findings and a critical appraisal performed. DISCUSSION: The results of this review will guide future research to improve early identification and timely intervention in infants with neonatal encephalopathy at risk of neuromotor impairment. SYSTEMATIC REVIEW REGISTRATION: Title registration with Joanna Briggs Institute https://joannabriggs.org/ebp/systematic_review_register .

Prenatal counseling: Guidelines for the care of people with spina bifida.

As the diagnosis of Spina Bifida (SB) is often made prenatally, SB-specific prenatal counseling is needed. It is essential to provide information about medical care and lifelong impact of this diagnosis, treatment options available to women carrying fetuses affected, and resources that will assist in the care of individuals with SB. This article outlines the SB Prenatal Counseling Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida and acknowledges that further research in SB prenatal counseling is warranted.

Family Integrated Care (FICare): Positive impact on behavioural outcomes at 18 months.

BACKGROUND: Children born very preterm demonstrate behavioural challenges due to clinical factors, exposure to the high stress environment of intensive care, and separation from parents during neonatal hospitalization at a critical stage in development. Family Integrated Care (FICare) significantly reduced parent stress and anxiety, and improved neonatal outcomes. AIMS: To examine the impact of FICare on behavioural outcomes at 18-21 months corrected age (CA), and assess possible mediation through parenting or infant growth. STUDY DESIGN AND METHODS: A prospective cohort study enrolling infants under 33 weeks gestation and parents from the FICare cluster randomized controlled trial. Primary outcome was behaviour assessed by the Infant Toddler Social Emotional Assessment (ITSEA). Parent child variables were measured with the Nursing Child Assessment Satellite Training (NCAST), Parenting Stress Index (PSI) and infant growth. RESULTS: Subjects included 123 FICare infants and 62 standard care controls evaluated at 18-21 months CA. FICare infants demonstrated lower ITSEA Dysregulation, indicating better self-regulation skills, compared with the control group (T-score 41.7 vs 46.6, p < 0.01). At 12 months CA, the NCAST Child subtotal score was higher and the PSI-Child Domain score was lower in FICare infants than non-FICare infants. The PSI-Child domain was identified as a possible mediator of FICare on child behaviour (mediation effect 1.28, -2.96-0.02, p = 0.044). CONCLUSION: FICare in the NICU has a sustained effect on child behaviour, improving self-regulation at 18-21 months CA.

Academic challenges for the preterm infant: Parent and educators' perspectives.

BACKGROUND: Little is known of educators' knowledge of the impact of preterm birth on academic achievement and nothing is known of parental perspective of this knowledge. AIMS: To examine the knowledge of the impact of preterm birth on academic achievement amongst Canadian educators, characterize educators' attitudes towards these challenges, and examine parental perspectives of the educational system for their preterm child. STUDY DESIGN AND METHODS: This was a mixed methods study involving kindergarten to Grade 3 educators and parents of preterm children aged 4-8 years. Focus groups were conducted with 35 educators and surveys were collected from 138 educators and 174 parents. Thematic analysis was employed for focus group data and findings from surveys were summarized using descriptive statistics. RESULTS: Themes identified from focus groups included: educators' knowledge was experiential, limited information sharing by parents, and lack of resources. No consensus existed amongst educators on facilitators or barriers in the educational system to help children born preterm. On the parent survey, parental disclosure of medical history was more frequent with lower gestational age. Most parents (94.9%, 130/137) advocated for extended neonatal follow-up and only 59.9% (82/137) expressed confidence that the school was meeting their child's needs. The educator survey confirmed these themes, except educators advocated for disclosure of the child's medical history (91.7%, 100/109). Additional qualifications and experience enhanced educators' knowledge, being a parent of a child born preterm did not. CONCLUSION: Educators are unprepared to address the academic challenges for the preterm child and training is needed. Parents and providers need to be prepared to advocate.

Children and Teens in Charge of their Health (CATCH): A protocol for a feasibility randomised controlled trial of solution-focused coaching to foster healthy lifestyles in childhood disability.

INTRODUCTION: Children with physical disabilities are rarely included in interventions to promote healthy lifestyles, despite being at higher risk for suboptimal dietary and physical activity behaviours. The Children and Teens in Charge of their Health study explores the feasibility and acceptability of conducting a randomised controlled trial (RCT) of a strengths-based, solution-focused coaching intervention for improving and sustaining physical activity and healthy dietary habits in children and young people with physical disabilities. METHODS AND ANALYSIS: Thirty children aged 10-18 years with a diagnosis of spina bifida or cerebral palsy who are able to set healthy lifestyle goals will be recruited from two children's rehabilitation hospitals in Ontario, Canada. Participants will be enrolled in the study for twelve months. All participants will receive standard care and printed information about healthy lifestyles. Of the 30 participants, 15 will be randomised to receive a coaching intervention for the first 6 months. Health indicators and psychosocial outcomes will be assessed by blinded assessors four times: at the start of the trial, immediately postintervention (6 months after randomisation), and at 3 and 6 months postintervention (9 and 12 months after randomisation, respectively). Predefined success criteria will be used to assess the feasibility of trial processes such as recruitment, attrition, stratification and intervention fidelity. Acceptability and perceived impact of the intervention will be explored qualitatively. ETHICS AND DISSEMINATION: The study has been approved by Holland Bloorview Kids Rehabilitation Hospital's Research Ethics Board (Ref: 17-752). A knowledge translation planning template will be used to ensure our findings have maximum reach. TRIAL REGISTRATION NUMBER: NCT03523806.