An evaluation of the quality, suitability and impact on equity of clinical practice guidelines relevant to preterm birth for use in Aotearoa New Zealand.

BACKGROUND: Preterm birth is a leading cause of perinatal morbidity and mortality and a defining event for pregnant people, infants, and whanau (extended families). Recommendations have been made for a national preterm birth prevention initiative focusing on equity in Aotearoa New Zealand, including the development of a national best practice guide. An understanding of the number and quality of guidelines, and consideration of their suitability and impact on equity is required. METHODS: Guidelines were identified through a systematic literature search, search of professional bodies websites, and invitation to regional health services in Aotearoa New Zealand. Obstetric and midwifery clinical directors were invited to report on guideline use. Identified guidelines were appraised by a 23-member trans-disciplinary Review Panel; quantitatively using the AGREE-II instrument and qualitatively using modified ADAPTE questions. The quality of guidelines available but not in use was compared against those in current use, and by health services by level of maternity and neonatal care. Major themes affecting implementation and impact on equity were identified using Braun and Clarke methodology. RESULTS: A total of 235 guidelines were included for appraisal. Guidelines available but not in use by regional health services scored higher in quality than guidelines in current use (median domain score Rigour and Development 47.5 versus 18.8, p < 0.001, median domain score Overall Assessment 62.5 versus 44.4, p < 0.001). Guidelines in use by regional health services with tertiary maternity and neonatal services had higher median AGREE II scores in several domains, than those with secondary level services (median domain score Overall Assessment 50.0 versus 37.5, p < 0.001). Groups identified by the Review Panel as experiencing the greatest constraints and limitations to guideline implementation were rural, provincial, low socioeconomic, Maori, and Pacific populations. Identified themes to improve equity included a targeted approach to groups experiencing the least advantage; a culturally considered approach; nationally consistent guidance; and improved funding to support implementation of guideline recommendations. CONCLUSIONS: We have systematically identified and assessed guidelines on preterm birth. High-quality guidelines will inform a national best practice guide for use in Taonga Tuku Iho, a knowledge translation project for equity in preterm birth care and outcomes in Aotearoa.

Culturally Safe Neonatal Care: Talking With Health Practitioners Identified as Champions by Indigenous Families.

The burden of health inequities borne by Indigenous peoples can be overwhelming, especially when mothers and newborns' lives are at stake and health services seem slow to invest in responsiveness. In Aotearoa (New Zealand), urgent action is required to eliminate persistent systemic inequities for Maori (Indigenous) whanau (family collectives that extend beyond the household). This Kaupapa Maori (by Maori, for Maori) qualitative study aimed to explore the views of health practitioners identified as champions by whanau of preterm Maori infants. Ten health practitioners were interviewed and asked about their involvement with the whanau, their role in explanations and communication, and their thoughts on whanau coping. Interview data were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: working together in partnership, a problem shared is a problem halved, and sacred space. Collaboration between health practitioners and with whanau was important to the champions and central to their goal of enabling whanau autonomy. This was built on a foundation of connectivity, relationships, and a full appreciation that childbirth is a sacred time that is potentially disrupted when an infant is born prematurely. The values- and relationship-based practices of these champions protected and uplifted whanau. They showed that health practitioners have important roles in both the elimination of inequities and the sustaining of Maori self-determination. This championship is an exemplar of what culturally safe care looks like in day-to-day practice with Maori and is a standard that other health practitioners should be held to.

A Survey of Neonatal Nurses on Mydriatic Regimens Used in Neonatal Retinopathy of Prematurity Eye Examinations.

OBJECTIVE: This study was aimed to determine mydriatic regimen(s) used in neonatal units in Aotearoa, New Zealand (NZ), and Australia and to estimate the frequency of adverse drug events following mydriatic administration in preterm neonates. STUDY DESIGN: A cross-sectional survey was sent to neonatal nursing staff listed in the Australian and New Zealand Neonatal Network contact list. Participants were asked to state what mydriatic regimen they use, and to estimate the frequency of adverse drug events when eye drops were administered for retinopathy of prematurity eye examinations (ROPEE). RESULTS: Thirteen different mydriatic regimens were identified; phenylephrine 2.5% and cyclopentolate 0.5% (1 standard drop of each) was the most commonly used regimen. Two of the regimens exceeded adult doses and five regimens included a mydriatic that is equivalent to an adult dose. Following mydriatic instillation, the three most common adverse effects were apnea, tachycardia, and periorbital pallor. CONCLUSION: Low-concentration single-microdrop regimens are currently in use and resulting in successful ROPEE, yet doses exceeding adult doses are in use throughout Aotearoa, NZ, and Australian units. We know from this dataset that neonates are experiencing unwanted and potentially preventable, adverse effects associated with mydriatics, and every effort should be made to minimize this risk. KEY POINTS: · Thirteen different regimens are in use in Aotearoa, NZ, and Australia.. · Three regimens use doses in excess of adult doses.. · Phenylephrine 2.5% and cyclopentolate 0.5% (one standard drop of each) is the most common regimen.

Child/youth, family and public engagement in paediatric services in high-income countries: A systematic scoping review.

BACKGROUND: Patient and public engagement in paediatric health-care decision making is under-researched, and there is a lack of systematically reviewed literature in this area. OBJECTIVE: To examine the extent, range and nature of published research investigating the engagement of children/youth, families and the public in paediatric service improvement, to summarize key aspects of the research identified and to identify gaps to help inform future research needs. METHODS: Literature was sought in MEDLINE, EMBASE, PsycINFO and CINAHL. Eligible articles presented research focused on patient, family and public engagement strategies in the paediatric health-care setting. Two reviewers extracted and charted data and analysed findings using a descriptive numerical summary analysis and a thematic analysis. RESULTS: From 4331 articles, 21 were eligible. Most were from the United States. The majority of studies were undertaken in hospital settings and used quantitative methods. Various patient and public engagement strategies/interventions were examined, including shared decision-making tools, questionnaires, youth councils/family advisory groups, patient portals and online networks. Most of the studies examined child/youth/parent satisfaction, with fewer investigating treatment outcomes or service improvement. The majority of studies investigated an engagement strategy at the 'individual treatment' level of engagement. Regarding the continuum of engagement, most of the studies were at either the 'consultation' or 'involvement' stage. CONCLUSION: Future research needs to focus on the investigation of engagement strategies delivered in primary care, and the use of more qualitative and mixed methods approaches is recommended. There is a gap in the area of engagement strategies directed towards 'service design and resources' and 'macro/policy' levels.

Complications following frenotomy for ankyloglossia: A 24-month prospective New Zealand Paediatric Surveillance Unit study.

AIM: To investigate the incidence and characteristics of complications arising from frenotomy for ankyloglossia (tongue-tie) in New Zealand. METHODS: Prospective surveillance among hospital-based paediatricians of complications arising from frenotomy for ankyloglossia to children <1 year old was conducted by the New Zealand Paediatric Surveillance Unit for 24 months, from August 2016 to July 2018, inclusive. RESULTS: A total of 16 cases of complications arising from frenotomy were reported. The overall average annual incidence rate was 13.9/100 000. Geographic variation was noted with a peak of 85.6/100 000 in one region. Complications reported: poor feeding (44%), respiratory events (25%), pain (19%), bleeding (19%) and weight loss (19%). Three children (19%) also had delayed diagnosis of an underlying medical condition initially overlooked in favour of treating their ankyloglossia, this has not previously been reported. The majority (75%) of cases required admission to hospital. Treatments given included supplementary feeds (44%), surgical intervention (25%), breastfeeding support (19%), analgesia (13%) and blood products (13%). A total of 25% of children had one or more frenotomies; 50% were treated for two or more of: 'anterior' ankyloglossia, 'posterior' ankyloglossia or 'lip tie'; 50% had their frenotomies performed out of the hospital. Dentists were the most common performing practitioner (31%). CONCLUSIONS: Frenotomy rates in New Zealand are unknown. Poor feeding, pain, bleeding, weight loss and delayed diagnosis of an alternative underlying medical condition are important complications that require hospital assessment and admission. Practitioners and parents/families need to be aware of these possibilities. Centralised guidelines with access to specialist second opinions should be developed.

Nutrition Practices and Predictors of Postnatal Growth in Preterm Infants During Hospitalization: A Longitudinal Study.

Premature infants are at high risk of undernutrition and extrauterine growth restriction. AIM: The aim of the study was to evaluate the relation between nutrition practices and growth rate in preterm infants from birth to 36 weeks postmenstrual age (PMA). METHODS: Longitudinal data were collected retrospectively in 103 infants born <33 weeks gestation admitted to Dunedin Neonatal Intensive Care Unit, New Zealand. Weight, length, and head circumference at birth and 36 weeks PMA z scores were calculated using the INTERGROWTH Preterm Growth Standard. Growth velocity (g ·â€Škg ·â€Šday) was determined via exponential model. Time to regain birth weight and nutritional practices including enteral nutrition, withholding feeds, nutrient intake, and feeding at discharge were described. Regression was used to explore associations between growth and nutritional variables. RESULTS: Growth faltering (weight-for-age z score <-1.28/10th centile) increased from 9% at birth to 19% at 36 weeks PMA. Mean (standard deviation) growth velocity in-hospital (14.2 [3.3] g ·â€Škg ·â€Šday) was well below the desirable rate of 18 g ·â€Škg ·â€Šday. Forty-one percent of infants had feeds withheld, which was significantly associated with a longer time period to achieve full enteral feedings (P < 0.001) and poorer weight and length z score at 36 weeks PMA (both P < 0.05). The day of life to establish full enteral feedings was longer than recommended yet positively associated with weight at 36 weeks PMA (P = 0.019), whereas controlling for withholding feeds and other known confounders. CONCLUSIONS: Extrauterine growth restriction was highly prevalent in this population. The negative association of withholding of feeds on growth reinforces the need to evaluate early life feeding protocols and further assess the longer-term influence of this practice on postdischarge growth outcomes.

He Tamariki Kokoti Tau-Tackling Preterm: a data-linkage methodology to explore the clinical care pathway in preterm deliveries.

BACKGROUND: Significant health inequities exist around maternal and infant health for Maori, the indigenous people of Aotearoa New Zealand - and in particular around a premature (preterm) delivery. Maori babies are more likely to be born preterm (8.1%, compared to an overall rate of 7.4%) and they are more likely to have a preterm death. An essential part of redressing these disparities is to examine the clinical care pathway and outcomes associated with preterm deliveries. This paper describes a protocol utilising national and local health collections to enable such a study. DESIGN: This is a retrospective cohort study comprising 5 years data pertaining to preterm deliveries from 2010 to 2014. These data are generated from linked national administrative and local health information collections to explore a range of neonatal outcomes and infant mortality in relation to the antenatal care pathway and known risk factors for preterm delivery. This study is being conducted within a Kaupapa Maori paradigm that dismisses victim blaming and seeks to intervene at structural levels to improve the health and wellbeing of Maori whanau (family). SIGNIFICANCE OF THE STUDY: Our data-linkage methodology optimises the utility of New Zealand health collections to address a significant health issue. Our findings will fill the information gaps around the burden of preterm delivery by quantifying the incidence of preterm delivery and adverse neonatal and infant outcomes in Aotearoa New Zealand. It will explore access to evidenced based care including use of steroids before birth, and appropriate place of delivery. The results from this study will inform maternity care services to improve management of preterm deliveries - both locally and internationally. This in turn will improve the preterm sequela by reducing the long-term health burden and health inequities.

Using non-pharmacological interventions to manage medical procedure-induced anxiety in children: a framework to guide best practice.

Medical procedure-induced anxiety in children can have short- and long-term negative effects. Research shows that children's anxiety can be affected by non-pharmacological interventions and adults' behaviours in a complex manner. This article presents a scoping review of the literature on non-pharmacological interventions to manage medical procedure-induced anxiety in children. Based on this review, the authors propose a framework comprising six strategies for effective non-pharmacological management of medical procedure-induced anxiety in children. A real-life, and anonymised, example is used to illustrate this framework in practice.

Written information about retinopathy of prematurity in Aotearoa New Zealand: identification, review and opportunities for improvement.

AIMS: The aims of this research include adapting a patient information tool for whanau (extended family) Maori needs, identifying and reviewing written information provided for the retinopathy of prematurity eye examination (ROPEE) and identifying improvements to ROPEE written information. METHODS: ROPEE patient information (printed leaflets, website, app) was obtained from all tertiary neonatal intensive care units in Aotearoa New Zealand (Aotearoa). Information was reviewed using an adapted "20 good-design principles" guide and given a star rating and Flesch-Kincaid readability score to identify acceptability and usability for patients. RESULTS: Seven ROPEE information materials were reviewed and varied in alignment with the adapted good-design principles tool. Based on the adapted good-design principles, opportunities were identified in many aspects of the written information for improvement, including words and language, tone and meaning, content and design. The Flesch-Kincaid grade level reading scores ranged from 12-22 years reading age. Written information also did not use te reo Maori (Aotearoa Indigenous language) or extensively use Maori imagery. CONCLUSION: Opportunities exist to improve ROPEE whanau information, including making content more readable, understandable and visually appealing. Optimising the clinical information on ROPEE nationally for Aotearoa will support whanau decision making, and aligning written information with Maori (Indigenous peoples of Aotearoa) is a priority.

Congenital diaphragmatic hernia in Northern Queensland.

AIMS: To investigate the survival of non-syndromic live born infants diagnosed in Northern Queensland with congenital diaphragmatic hernia (CDH). METHOD: Case note audit was completed of all live born newborns with a diagnosis of CDH admitted between February 1987 and December 2010. Demographic and clinical data were extracted. RESULTS: Overall survival to time of discharge for all infants was 67.3% (n = 35/52). For infants born before 2003 survival was 59.5% and for those born in 2003 and onwards was 86.7% (P = 0.10, OR 4.4, 95% confidence interval (CI) 0.87-22.55). Infants born prior to 2003, compared to those born from 2003 onwards, were less likely to survive with an isolated defect (P = 0.04, OR 8.0, 95% CI 0.93-68.62). Isolated congenital diaphragmatic hernia survival since 2003 was 92.3%. A significant difference was found in the time to surgery with those born in 2003 onwards having surgery significantly later, median 134 h, compared to the earlier cohorts median time to surgery of 83 h (P < 0.005, 95% CI 32.61-167.09). Premature infants had poorer survival (46.7%) compared to term infants (75.7%) (P < 0.0001 OR 3.6, 95% CI 1.99-6.68). Univariate analysis identified low birthweight was associated with poorer survival. CONCLUSIONS: Survival to discharge in our cohort equals other reported rates in Australia and around the world, including centres with tertiary paediatric services. The current management strategies used for these infants have seen a significant improvement in outcomes over time.

Low dose or very low dose phenylephrine and cyclopentolate microdrops for retinopathy of prematurity eye examinations (The Little Eye Drop Study): a randomised controlled non-inferiority trial.

OBJECTIVE: To determine if very low dose (VLD, 0.5% phenylephrine, 0.1% cyclopentolate) mydriatic microdrop (approximately 7 µL) administration (up to three doses) is non-inferior to low dose (LD, 1% phenylephrine, 0.2% cyclopentolate) mydriatic microdrop administration for ophthalmologist-determined successful retinopathy of prematurity eye examination (ROPEE). DESIGN: Multicentre, prospective, randomised controlled, non-inferiority clinical trial. SETTING: Four neonatal intensive care units in Aotearoa, New Zealand from October 2019 to September 2021. PATIENTS: Infants with a birth weight less than 1250 g or gestational age less than 30+6 weeks and who required a ROPEE. INTERVENTIONS: The intervention: microdrop (approximately 7 µL) of VLD (0.5% phenylephrine and 0.1% cyclopentolate) to both eyes, or the comparison: microdrop of LD (1% phenylephrine and 0.2% cyclopentolate) to both eyes. Up to three doses could be administered. MAIN OUTCOME MEASURES: The primary outcome measure was an ophthalmologist-determined successful ROPEE. RESULTS: One hundred and fifty preterm infants (LD mean GA=27.4±1.8 weeks, mean birth weight=1011±290 g, VLD mean GA=27.5±1.9 weeks, mean birth weight=1049±281 g,) were randomised. Non-inferiority for successful ROPEE was demonstrated for the VLD group compared with the LD group (VLD successful ROPEE=100%, LD successful ROPEE=100%, 95% CI no continuity correction -0.05 to 0.05) and for Maori (95% CI no continuity correction -0.02 to 0.19). CONCLUSION: VLD microdrops enable safe and effective screening for ROPEE in both Maori and non-Maori preterm infants. TRIAL REGISTRATION NUMBER: ACTRN12619000795190.

Perinatal arterial ischemic stroke in northern Queensland.

OBJECTIVES: Our objective was to review the occurrence, presentation, and associated risk factors of stroke in infants at a tertiary neonatal intensive care unit. STUDY DESIGN: Inpatient electronic records identified infants between March 2002 and March 2011 who had perinatal arterial ischemic stroke. RESULTS: Ten infants had perinatal arterial ischemic stroke, 50% were outborn, 20% were indigenous, and mortality was 30%. Median birth weight was 2970 g (range 1699 to 3443 g), and median gestation was 36 weeks (range 32 to 41 weeks). Perinatal arterial ischemic stroke were left sided in three, right sided in three, and bilateral in four. Presentation included four with seizures, four with apnea/sepsis, one with thrombosis, and one without symptoms. In 4 of 10 cases reported in this series, there was a maternal history of gestational diabetes, although the incidence of gestational diabetes in Australia is only 4.5%. CONCLUSION: The incidence of gestational diabetes mellitus in our cases appears to be very much higher than the average population. Larger studies are needed to determine if gestational diabetes mellitus is a risk factor for perinatal arterial ischemic stroke.

Sleep-in to stay well: addressing school start times for the health and wellbeing of teens in Aotearoa.

The under-acknowledged malleability of secondary school start times may be a lever towards addressing poor sleep, particularly the sleep deprivation that many adolescents living in Aotearoa New Zealand experience on a daily basis. Scrutinising morning school start times has not been prioritised in terms of a logical, modifiable way to counteract sleep deprivation in adolescents in Aotearoa. Importantly, later start times align with adolescents' natural sleep-wake biology that shifts at puberty to favour later bedtimes, meaning they naturally need to wake later in the morning. In this viewpoint we argue that a later school start time (no earlier than 9:45 am) every day for senior secondary school students is an attractive, non-stigmatising approach to address adolescent sleep. Increased sleep also has the potential to favourably impact multiple areas of adolescents' health and wellbeing, as well as school success. In fact, we argue that later school start times are a public health imperative to address the sleep and mental health issues faced by youth in Aotearoa today.

He Tamariki Kokoti Tau: Families of Indigenous Infants Talk about Their Experiences of Preterm Birth and Neonatal Intensive Care.

Maori (Indigenous peoples of Aotearoa New Zealand) bear an unequal burden of poor perinatal health outcomes, including preterm birth. An infant arriving preterm disrupts the birth imaginary of whanau (family collectives) and situates them in a foreign health environment that may not be culturally safe and nurturing. A cross-sectional interpretative phenomenological analysis of first interviews with 19 whanau participating in a Kaupapa Maori (by, with, for Maori) qualitative longitudinal study of preterm birth identified themes from their experiences and the meanings they attributed to them. Preterm birth was an emotional roller coaster, with the birth imaginary and anticipated roles disrupted as health practitioners took over the care of their infants. Whanau expressed the desire to be close to their infants, holding them, loving them, nurturing them, and emplacing them within whakapapa (genealogy, continual layering of foundations) networks. When health practitioners or hospital policies inhibited this intimacy by isolating, excluding, or discriminating, whanau were frustrated. Being familiar with hospital routines, staff, peers, infant cares, and being wrapped in wider whanau support were key for whanau coping. Whakawhanaungatanga (processes of establishing relationships) create safe spaces for whanau to be themselves. This quietens the 'storm' and returns whanau to a sense of calm, through the reclamation of their environment.

He Korowai Manaaki (Pregnancy Wraparound Care): Protocol for a Cluster Randomized Clinical Trial.

BACKGROUND: Maternal and infant health inequities between Maori (the Indigenous peoples of Aotearoa New Zealand) and New Zealand European women are well documented and cannot be explained solely by socioeconomic status. A research center-iwi (tribal group) partnership aims to address these disparities and improve maternal and infant health outcomes by implementing an augmented maternity care pathway (He Korowai Manaaki) to improve access to services and evidence-informed care. OBJECTIVE: The objective of this study is to test whether an augmented maternity care pathway improves Maori infant health outcomes. METHODS: This is a Kaupapa Maori (by, with, and for Maori) cluster randomized clinical trial involving 8 primary care practices allocated to either an intervention arm or control arm. The intervention arm comprises an augmented maternity care pathway (He Korowai Manaaki) offering clinical care through additional paid health care appointments and improved access to social support (eg, housing, transport). The control arm is usual care. The primary outcome is increased timely vaccination for Maori infants, defined as all age-appropriate vaccinations completed by 6 months of age. RESULTS: Recruitment commenced in November 2018 and was completed in June 2020, with 251 enrolled women recruited in intervention primary care practices before 20 weeks of pregnancy. Publication of results is anticipated in late 2023. CONCLUSIONS: The results will inform primary health care policy including whether the provision of augmented maternal care pathways reduces disparities in the structural determinants of health. If effective, He Korowai Manaaki will strengthen the health and well-being of pregnant Maori women and their babies and improve their health outcomes, laying a strong foundation for lifelong health and well-being. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12619001155189; https://tinyurl.com/yypbef8q. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/18154.

He Tamariki Kokoti Tau: Tackling preterm incidence and outcomes of preterm births by ethnicity in Aotearoa New Zealand 2010-2014.

OBJECTIVE: To explore preterm birth among Maori indigenous peoples through Kaupapa Maori research of preterm birth in Aotearoa New Zealand. METHODS: Linked maternity, mortality, and hospital data were analyzed for women and their infants born between January 1, 2010 and December 31, 2014. Relative risks (RR) were calculated for each ethnic group for preterm birth, small for gestational age (SGA), and mortality. RESULTS: Adjusted rates showed that compared with Maori women, European women were at significantly less risk of having extremely and very preterm infants (RR 0.86, 95% confidence interval [CI] 0.76-0.95). Preterm infants of European women had a significantly lower adjusted RR of early neonatal death (RR 0.65, 95% CI 0.45-0.93) or post-neonatal death (RR 0.41, 95% CI 0.26-0.64). In addition to ethnicity, preterm rates were influenced by maternal age, body mass index, smoking status, and SGA status. CONCLUSION: This study demonstrates that the Aotearoa New Zealand maternity system privileges whiteness, suggesting that clinical pathways for evidence-based medical care are not delivered systemically and equitably for all. Health pathways that focus on equity as a fundamental right will enhance health outcomes for Maori women and their infants.

A call for action that cannot go to voicemail: Research activism to urgently improve Indigenous perinatal health and wellbeing.

In this call to action, a coalition of Indigenous and non-Indigenous researchers from Australia, Aotearoa New Zealand, United States and Canada argue for the urgent need for adequately funded Indigenous-led solutions to perinatal health inequities for Indigenous families in well-resourced settler-colonial countries. Authors describe examples of successful community-driven programs making a difference and call on all peoples to support and resource Indigenous-led perinatal health services by providing practical actions for individuals and different groups.