'We did everything by phone': a qualitative study of mothers' experience of smartphone-aided screening of cerebral palsy in Kathmandu, Nepal.

BACKGROUND: International guidelines recommend early intervention to all children at risk of cerebral palsy, but targeted screening programs are often lacking in low- and middle-income settings with the highest burden of disease. Smartphone applications have the potential to improve access to early diagnostics by empowering parents to film their children at home followed by centralized evaluation of videos with General Movements Assessment. We explored mothers' perceptions about participating in a smartphone aided cerebral palsy screening program in Kathmandu, Nepal. METHODS: This is an explorative qualitative study that used focus group discussions (n = 2) and individual interviews (n = 4) with mothers of term-born infants surviving birth asphyxia or neonatal seizures. Parents used the NeuroMotion™ smartphone app to film their children at home and the videos were analysed using Precthl's General Movements Assessment. Sekhon et al.'s framework on the acceptability of health care interventions guided the design of the group discussions and interviews, and the deductive qualitative content analysis. RESULTS: Mothers were interested in engaging with the programme and expressed hope it would benefit their children. Most felt using the app was intuitive. They were, however, unclear about the way the analysis was performed. Support from the research team was often needed to overcome an initial lack of self-confidence in using the technology, and to reduce anxiety related to the follow-up. The intervention was overall perceived as recommendable but should be supplemented by a face-to-face consultation. CONCLUSION: Smartphone aided remote screening of cerebral palsy is acceptable in a lower middle-income population but requires additional technical support.

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.

Web-based follow-up tool (ePIPARI) of preterm infants-study protocol for feasibility and performance.

BACKGROUND: Preterm infants have a risk of health and developmental problems emerging after discharge. This indicates the need for a comprehensive follow-up to enable early identification of these problems. In this paper, we introduce a follow-up tool "ePIPARI - web-based follow-up for preterm infants". Our future aim is to investigate whether ePIPARI is a feasible tool in the follow-up of preterm infants and whether it can identify children and parents in need of clinical interventions. METHODS: ePIPARI includes eight assessment points (at term age and at 1, 2, 4, 8, 12, 18, and 24 months of corrected age) when the child´s health and growth, eating and feeding, neurodevelopment, and parental well-being are evaluated. ePIPARI consists of several widely used, standardized questionnaires, in addition to questions typically presented to parents in clinical follow-up visits. It also provides video guidance and written information about age-appropriate neurodevelopment for the parents. Parents of children born before 34 weeks of gestation during years 2019-2022 are being invited to participate in the ePIPARI study, in which web-based follow-up with ePIPARI is compared to clinical follow-up. In addition, the parents of children born before 32 weeks of gestation, who reached the corrected age of two years during 2019-2021 were invited to participate for the assessment point of 24 months of ePIPARI. The parents are asked to fill in the online questionnaires two weeks prior to each clinical follow-up visit. DISCUSSION: The web-based tool, ePIPARI, was developed to acquire a sensitive and specific tool to detect infants and parents in need of further support and clinical interventions. This tool could allow individualized adjustments of the frequency and content of the clinical visits. TRIAL REGISTRATION: ClinicalTrials.cov, NCT05238168 . Registered 11 April 2022 - Retrospectively registered.

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.

Gratitude, fragility and strength: Perspectives of adults born preterm about prematurity.

AIM: The aim of the study was to explore how young adults thought that being born preterm had affected their lives. METHODS: Adult participants of a research cohort were questioned about their perspectives. Answers were analysed using mixed methods. RESULTS: Forty-five participants evaluated their health at median score of 8/10. When asked about the meaning of being born preterm, 65% had positive self-centred answers, invoking two main themes: being stronger/'a fighter'/more resilient and being a survivor/chosen; 42% also reported negative themes, such as having health problems and a difficult start. All heard about their prematurity from their parents, 55% with positive child-centred or healthcare system-centred themes, 19% with neutral themes; 35% also heard negative parent-centred themes (tragic experience, guilt, mother's health). When asked which words were associated with prematurity, participants mainly chose positive words for themselves and their family, but more negative words for how the media and society depicted prematurity. Answers were not correlated with adverse objective health measures. CONCLUSION: Participants evaluated their health in a balanced fashion. Preterm-born adults often feel that they have experienced positive transformations as a result of their traumatic start. They often have feelings of gratitude and strength, independent of health problems.

Very-low-birth-weight infant short-term post-discharge outcomes: A retrospective study of specialized compared to standard care.

OBJECTIVE: Ongoing health care challenges, low breast milk intake, and the need for rehospitalization are common during the first year of life after hospital discharge for very low birth weight (VLBW) infants. This retrospective cohort study examined breast milk intake, growth, emergency department (ED) visits, and non-surgical rehospitalizations for VLBW infants who received specialized post-discharge follow-up in western Canada, compared to VLBW infants who received standard follow-up in central Canada. DESIGN: Data were collected from two neonatal follow-up programs for VLBW babies (n = 150 specialized-care; n = 205 standard-care). Logistic regression was used to examine odds of breast milk intake and generalized estimating equations were used for odds of growth, ED visits and non-surgical rehospitalization by site. RESULTS: Specialized-care was associated with enhanced breast milk intake duration; the odds of receiving breastmilk at 4 months in the specialized-care cohort was 6 times that in the standard-care cohort. The specialized-care cohort had significantly more ED visits and rehospitalizations. However, for infants with oxygen use beyond 36 weeks compared to those with no oxygen use, the standard-care cohort had over 7 times the odds of rehospitalization where as the specialized-care cohort with no increased odds of rehospitalization. CONCLUSION: Specialized neonatal nursing follow-up was associated with continued breastmilk intake beyond discharge. Infants in the specialized-care cohort used the ED and were hospitalized more often than the standard-care cohort with the exception of infants with long term oxygen needs.

Lower Maternal Chronic Physiological Stress and Better Child Behavior at 18 Months: Follow-Up of a Cluster Randomized Trial of Neonatal Intensive Care Unit Family Integrated Care.

OBJECTIVE: To assess whether Family Integrated Care (FICare) in the neonatal intensive care unit improves maternal chronic physiological stress and child behavior at 18 months of corrected age for infants born preterm. STUDY DESIGN: Follow-up of a multicenter, prospective cluster-randomized controlled trial comparing FICare and standard care of children born at <33 weeks of gestation and parents, stratified by tertiary neonatal intensive care units, across Canada. Primary outcomes at 18 months of corrected age were maternal stress hormones (cortisol, ie, hair cumulative cortisol [HCC], dehydroepiandrosterone [DHEA]) assayed from hair samples. Secondary outcomes included maternal reports of parenting stress, child behaviors (Internalizing, Externalizing, Dysregulation), and observer-rated caregiving behaviors. Outcomes were analyzed using multilevel modeling. RESULTS: We included 126 mother-child dyads from 12 sites (6 FICare sites, n = 83; 6 standard care sites, n = 43). FICare intervention significantly lowered maternal physiological stress as indicated by HCC (B = -0.22 [-0.41, -0.04]) and cortisol/DHEA ratio (B = -0.25 [-0.48, -0.02]), but not DHEA (B = 0.01 [-0.11, 0.14]). Enrollment in FICare led to lower child Internalizing (B = -0.93 [-2.33, 0.02]) and Externalizing behavior T scores (B = -0.91 [-2.25, -0.01]) via improvements to maternal HCC (mediation). FICare buffered the negative effects of high maternal HCC on child Dysregulation T scores (B = -11.40 [-23.01, 0.21]; moderation). For mothers reporting high parenting stress at 18 months, FICare was related to lower Dysregulation T scores via maternal HCC; moderated mediation = -0.17 (-0.41, -0.01). CONCLUSIONS: FICare has long-term beneficial effects for mother and child, attenuating maternal chronic physiological stress, and improving child behavior in toddlerhood. CLINICAL TRIAL REGISTRATION: NCT01852695.

The AIMS home-video method: parental experiences and appraisal for use in neonatal follow-up clinics.

BACKGROUND: In The Netherlands, prematurely born infants and their parents are offered regular developmental check-ups in a hospital setting. In line with providing healthcare at distance, the use of video footage showing the infant's behavior and movements, taken by parents at home and assessed by professionals online, might be a fruitful future practice. The focus of this study was to gain insight into parental experiences with the Alberta Infant Motor Scale home-video method and their appraisal of its applicability for use in an outpatient neonatal follow-up clinic. METHOD: A qualitative descriptive study among parents of healthy extremely or very premature infants (GA 26.2-31.5 weeks) participating in a longitudinal study of motor development between 3-18 months corrected age. Ten semi-structured interviews were conducted and transcribed verbatim. Data was analyzed independently. Inductive content analysis was performed following the process of the AIMS home-video method. RESULTS: Parents appraised the AIMS home-video method as manageable and fun to do. Instructions, instruction film, and checklists were clear. Transferring the video footage from their phone to their computer and uploading it to the web portal was sometimes time-consuming. Parents gained a better awareness of their infant's motor development and found the provided feedback a confirmation of what they already thought about their infant's development and was reassuring that their child was doing well. First-time parents seemed more uncertain and had a greater need for information about (motor) development, but on the other hand, also had confidence in their child. All parents thought that home-videos can be an addition to follow-up visits, but cannot replace (all) visits. It may be an opportunity to reduce the frequency of hospital visits, while still having their infant monitored. CONCLUSION: Parents appraised the AIMS home-video method positively and are of the opinion that home-videos can be of added value in monitoring infants at risk in neonatal follow-up additional to hospital visits. In future research a user-friendly application and/or platform to exchange video footage safely between parents and professionals should be developed with all possible stakeholders involved and implementation should be explored.

Neonatal follow-up programs in Canada: A national survey.

BACKGROUND: A 2006 Canadian survey showed a large variability in neonatal follow-up practices. In 2010, all 26 tertiary level Neonatal Follow-Up clinics joined the Canadian Neonatal Follow-Up Network (CNFUN) and agreed to implement a standardized assessment (including the Bayley Scales of Infant and Toddler Development-III (Bayley-III) at 18 months corrected age for children born < 29 weeks' gestation. It is unknown whether the variability in follow-up practices lessened as a result. OBJECTIVES: To describe the current status of neonatal follow-up services in Canada and changes over time. METHODS: A comprehensive online survey was sent to all tertiary level CNFUN Follow-up programs. Questions were based on previous survey results, current literature, and investigator expertise and consensus. RESULTS: Respondents included 23 of 26 (88%) CNFUN programs. All sites provide neurodevelopmental screening and referrals in a multidisciplinary setting with variations in staffing. CNFUN programs vary with most offering five to seven visits. Since 2006, assessments at 18 months CA increased from 84% to 91% of sites, Bayley-III use increased from 21% to 74% (P=0.001) and eligibility for follow-up was expanded for children with stroke, congenital diaphragmatic hernia and select anomalies detected in utero. Audit data is collected by > 80% of tertiary programs. CONCLUSION: Care became more consistent after CNFUN; 18-month assessments and Bayley-III use increased significantly. However, marked variability in follow-up practices persists.

Supporting caregivers of children born prematurely in the development of language: A scoping review.

BACKGROUND: Infants born prematurely can display impairments that negatively impact the early years of their development. Compared to their peers born at term, preterm children have higher risks of cerebral palsy, sensory deficits, learning disabilities, cognitive and language deficits, as well as difficulties related to attention and behaviour. Following discharge, parents of preterm children are often supported through neonatal follow-up programs or by community health care practitioners. Through assessment and consultation, professionals foster parental resilience by teaching them about their child's development. Research shows a large volume of literature on improving outcomes for preterm infants, but less attention has been given to the impact and potential importance of education of parents regarding the care they provide from the home. OBJECTIVE: A scoping review was completed to determine the best practices for early intervention in premature children regarding the development of language skills during the preschool years. METHODS: The review followed the guidelines for the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA). RESULTS: Four general themes emerged from the review and included the importance of providing (1) parental training in the care of an infant born prematurely during neonatal intensive care unit stay; (2) education on the development of language and the importance of parental responsiveness; (3) provision of activities to support child language learning; and (4) overall and ongoing monitoring and support by qualified health professionals. CONCLUSIONS: The conclusions drawn will provide guidance to health care professionals regarding the education of parents on best practices for stimulating language development in their child.

Risk factors for re-hospitalization following neonatal discharge of extremely preterm infants in Canada.

OBJECTIVE: Survivors of extremely preterm birth are at risk of re-hospitalization but risk factors in the Canadian population are unknown. Our objective is to identify neonatal, sociodemographic, and geographic characteristics that predict re-hospitalization in Canadian extremely preterm neonates. METHODS: This is a retrospective analysis of a prospective observational cohort study that included preterm infants born 22 to 28 weeks' gestational age from April 1, 2009 to September 30, 2011 and seen at 18 to 24 months corrected gestational age in a Canadian Neonatal Follow-Up Network clinic. Characteristics of infants re-hospitalized versus not re-hospitalized are compared. The potential neonatal, sociodemographic, and geographic factors with significant association in the univariate analysis are included in a multivariate model. RESULTS: From a total of 2,275 preterm infants born at 22 to 28 weeks gestation included, 838 (36.8%) were re-hospitalized at least once. There were significant disparities between Canadian provincial regions, ranging from 25.9% to 49.4%. In the multivariate logistic regression analysis, factors associated with an increased risk for re-hospitalization were region of residence, male sex, bronchopulmonary dysplasia, necrotizing enterocolitis, prolonged neonatal intensive care unit (NICU) stay, ethnicity, Indigenous ethnicity, and sibling(s) in the home. CONCLUSION: Various neonatal, sociodemographic, and geographic factors predict re-hospitalization of extremely preterm infants born in Canada. The risk factors of re-hospitalization provide insights to help health care leaders explore potential preventative approaches to improve child health and reduce health care system costs.

Developmental and medical factors associated with parenting stress in mothers of toddlers born very preterm in a neonatal follow-up clinic.

The purpose of this exploratory, cross-sectional study was to identify child-related factors associated with maternal parenting stress in toddlers born very preterm and followed in a neonatal follow-up (NFU) clinic. The study aimed to describe the associations of current medical complications and presence of developmental delays with total parenting stress. Participants were 53 mother-child dyads presenting in a NFU clinic. Mothers completed the Parenting Stress Index-Short Form (PSI-SF), and children were administered the Brigance Early Head Start Screen II. Medical variables were also collected from the child's medical record. Approximately 24% of mothers had at least one elevated subscale score on the PSI-SF. Regression analyses indicated that receipt of early intervention services was associated with increased parenting stress among mothers of toddlers born very preterm, though number of current medical complications was not. Parents of children born very preterm are at increased risk for parenting stress that extends beyond discharge from the neonatal intensive care unit . Clinicians working in NFU clinics are positioned to monitor for increased parenting stress, particularly among families of children with emerging signs of developmental delay.

El propósito de este estudio exploratorio y transversal fue identificar factores relacionados con el niño, asociados con el estrés de crianza maternal en niños pequeñitos nacidos muy prematuramente en una clínica de seguimiento neonatal (NFU). El estudio se propuso describir las asociaciones entre las complicaciones médicas actuales y la presencia de retardos en el desarrollo y el estrés de crianza en su totalidad. Las participantes fueron 53 díadas madre-hijo que se presentaron a una clínica NFU. Las madres completaron el Formulario Corto del Índice de Estrés de Crianza (PSI-SF) y a los niños se les administró el Examen Brigance para Un Comienzo Temprano - Nivel II de Detección. También se recolectaron las variables médicas a partir de la trayectoria médica del niño. Aproximadamente el 24% de las madres tuvo por lo menos un puntaje de sub-escala elevado en el PSI-SF. Los análisis de regresión indicaron que recibir servicios de intervención temprana, no así el número de actuales complicaciones médicas, estaba asociado con el incremento en el estrés de crianza entre madres de niños pequeñitos nacidos muy prematuramente. Los padres de niños nacidos muy prematuramente enfrentan un incremento en el riesgo de estrés de crianza, todo lo cual se extiende más allá del momento en que se les da de alta de la unidad neonatal de cuidados intensivos (NICU). El personal clínico que trabaja en clínicas NFU está en posición de observar con atención el aumento del estrés de crianza, particularmente entre familias de niños en quienes aparecen señales de retardo en el desarrollo. Palabras claves: estrés de crianza, infantes prematuros, seguimiento neonatal.

Developmental and Medical Factors Associated with Parenting Stress in Mothers of Toddlers Born Very Preterm in a Neonatal Follow-Up Clinic Le but de cette étude d'exploration transversale était d'identifier des facteurs liés à l'enfant associés au stress de parentage maternel chez de jeunes enfants nés très avant terme et suivis dans une clinique de suivi néonatal (ici abrégé NFU selon l'anglais). L'étude s'est donné pour but de décrire les associations entre les complications médicales du moment et la présence de délais de développement avec le stress de parentage totale. Les participantes ont consisté en 53 dyades mère-enfant dans une clinique NFU. Les mères ont rempli le Formulaire d'Index de Stress de Parentage - version courte (PSI-SF dans l'abréviation anglaise) et les enfants ont reçu le dépistage Brigance Early Head Start Screen II. Les variables médicales ont été rassemblées à partir du dossier médical de l'enfant. A peu près 24% des mères avaient au moins un score de sous-échelle élevé pour le PSI-SF. Des analyses de régression ont indiqué que le fait de recevoir des services d'intervention et non le nombre de complications médicales actuelles était lié à un stress de parentage plus élevé chez les mères de jeunes enfants nés bien avant terme. Les parents d'enfants nés bien avant terme sont à un risque plus élevé de stress parental qui se prolonge bien après la sortie de de l'unité néonatale de soins intensifs à l'hôpital. Les cliniciens travaillant dans les cliniques NFU sont bien positionnés pour surveiller le stress parental accru, particulièrement chez les familles d'enfants avec des signes émergeant de retard de développement. Mots clés: Stress de parentage, bébés prématurés, suivi néonatal.

A journey through follow-up for neurodevelopmentally at-risk infants-A qualitative study on views of parents and professionals in Liverpool.

BACKGROUND: With improving neonatal intensive care, more preterm babies or those with hypoxic-ischaemic encephalopathy are surviving the newborn period. These babies are at high risk of neurodevelopmental delay. No studies to date have looked at the views of parents and professionals in relation to the processes of follow-up for these infants. METHODS: We conducted a qualitative study in order to understand the views of parents of preterm babies or those with hypoxic-ischaemic encephalopathy as well as the views of professionals who manage and support these families. Parents were recruited through general neonatal follow-up clinics, neonatal nurse liaison services and community child health clinics and professionals through the neonatal unit and neurodevelopmental paediatrics services. We conducted in-depth interviews using an open-ended topic guide, which were audio recorded, transcribed and coded. We conducted a thematic content analysis where themes were inductively highlighted and grouped by consensus in order to conclude on major themes and subthemes. RESULTS: Three major themes were identified for parents and professionals. These were the following: (a) What is the future, (b) What is the journey and (c) Who can help me? Parents wanted better information earlier about the prognosis and diagnoses through face to face, honest consultations with follow-up information available on the Internet. The most important requirements for follow-up clinics were honesty, reassurance, consistent pathways of follow-up and the need for a lead professional in the process. Alongside the follow-up process, there was a need for support groups and psychological support CONCLUSIONS: This study highlights the desire by parents for early information on the likely long-term outlook for their babies but the need to ensure that the information and support, which is given, is provided appropriately and with consideration in order to provide the best care of the whole family.

Maternal and infant predictors of attendance at Neonatal Follow-Up programmes.

BACKGROUND: Neonatal Follow-Up (NFU) programmes provide health services for families of infants at high risk of developmental problems following difficult or extremely premature birth: yet, up to 30% of families do not attend these programmes with their infants. METHODS: The study objective was to determine maternal and infant factors that predicted attendance at NFU programmes. Utilizing Andersen's Behavioural Model of Health Services Use, a prospective two-phase multi-site descriptive cohort study was conducted in three Canadian Neonatal Intensive Care Units (NICU) that refer to two affiliated NFU programmes. In Phase 1, 357 mothers completed standardized questionnaires that addressed maternal and infant factors, prior to their infants' NICU discharge. In Phase 2, attendance at NFU was followed at three time points over a 12-month period. Factors of interest included predisposing factors (e.g. demographic characteristics and social context); enabling factors (e.g. social support, travel distance, and income); and infant illness severity (i.e. needs factors). Multivariate logistic regression was used to estimate the odds ratio for each independent factor. RESULTS: Mothers parenting alone, experiencing higher levels of worry about maternal alcohol or drug use, or at greater distances from NFU were less likely to attend. Mothers experiencing higher maternal stress at the time of the infant's NICU hospitalization were more likely to attend NFU. No infant factors were predictive of NFU attendance. CONCLUSIONS: Mothers at risk of not attending NFU programmes with their infants require better identification, triage, referral and additional support to promote engagement with NFU programmes and improved quality of life for their high-risk infants.

Associations between Fetal Symptoms during Pregnancy and Neonatal Clinical Complications with Toxoplasmosis.

INTRODUCTION: Toxoplasmosis is a parasitism transmitted by Toxoplasma gondii, part of the TORCH complex, the most prevalent parasitism worldwide. It is asymptomatic in immunocompetent individuals but causes severe infections and developmental abnormalities in pregnant women, mainly affecting the central nervous system and the gastrointestinal system. METHODS: In our prospective study, we analyzed cases of recent maternal Toxoplasma infections confirmed by serological testing between 1996 and 2020 at the Department of Obstetrics and Gynecology, Semmelweis University. Amniocentesis, followed by PCR, was performed in cases of recent infection confirmed by serological testing during pregnancy. After birth, a neonatological, microbiological, pediatric neurological and ophthalmological examination and a follow-up was carried out. RESULTS: During the study period, a total of 238 cases of amniotic fluid Toxoplasma PCR testing due to Toxoplasma recent infection were performed. In terms of pregnancies, there were 219 deliveries and seven abortions. Twelve cases had no data available on the outcome of the pregnancy. In total, 133 cases of ultrasound abnormalities were detected during pregnancy, while in 105 cases, no abnormalities were detected on ultrasound examination. During amniocentesis, eight cases of Toxoplasma infection were revealed in amniotic fluid samples by PCR, and in 230 cases, the result was negative. Neonatal follow-up was performed in 139 cases, with no abnormalities during follow-up in 117 cases, and in 22 cases, there was a detectable complication that was likely to be related to Toxoplasma infection. In all 22 cases, amniotic fluid PCR Toxoplasma testing was negative. CONCLUSIONS: The most common ultrasound abnormalities involve the nervous system and the gastrointestinal system. In cases of suspicion, it is recommended to perform amniocentesis Toxoplasma PCR testing besides the indirect methods to help the pregnant woman decide whether to carry the pregnancy to term. During follow-up, a multidisciplinary team experienced in pregnancies complicated by toxoplasmosis must carry out the follow-up, care and subsequent development.

Social determinants of health rather than race impact health-related quality of life in 10-year-old children born extremely preterm.

Background: Reducing healthcare disparities among children is extremely important given the potential impact of these disparities on long-term health-related quality of life (HRQL). Race and parental socioeconomic status (SES) are associated with child HRQL, but these associations have not been studied in infants born extremely preterm (EP), a population at increased risk for physical, cognitive, and psychosocial impairments. Achieving health equity for infants born EP across their life course requires identifying the impact of racism and SES on HRQL. Objective: We aimed to evaluate the association between self-reported maternal race, SES factors, and HRQL among 10-year-old children born EP. Design/methods: Participants were identified from an ongoing multicenter prospective longitudinal study of Extremely Low Gestational Age Newborns (ELGAN Study), born between 2002 and 2004, and evaluated at 10 years of age using the Pediatric quality of life (QoL) Inventory completed by their parent or guardian, assessing physical, emotional, social, school, and total (composite) QoL domains. Multivariable regression models were used to evaluate the relationship between QoL scores and self-identified maternal race, adjusting for SES factors (education level, marital status, and public insurance). Results: Of 1,198 study participants who were alive at 10 years of age, 863 (72.0%) were evaluated at 10 years of age. Differences in mean 10-year QoL scores across racial groups were observed and were significant on univariate analysis. However, these associations attenuated when adjusted for the marital status, public insurance status, and education status of mothers. A comparison of children with English as the primary language spoken at home vs. any other language revealed a significant difference only in school QoL, in which non-English language was associated with more favorable school QoL scores. Conclusions: Among 10-year-old children born EP, differences in parent-reported QoL were associated with maternal SES factors but not with race. Our results suggest that interventions designed to improve the SES of mothers may enhance the QoL of children born EP. Furthermore, these results underscore that race is a social construct, rather than a biological variable, as we work toward greater equity in care provision.

Reading to the Preterm Infant: Parent Perspectives on Barriers and Facilitators.

OBJECTIVE: To describe parent-reported barriers and facilitators to reading to preterm-born infants, both in the neonatal intensive care unit (NICU) and at home. We hypothesized that families of preterm infants face unique barriers previously not described in the literature, and that understanding barriers from the parent perspective will uncover strategies for improving the NICU environment and cognitive home environment and allow refinement of current reading programs. METHODS: We performed a qualitative study of parents of 0 to 12 month corrected age infants presenting to neonatal follow-up clinic. Infants were born <33 weeks gestational age or with birth weight ≤1500 grams. Parents completed a semistructured interview about reading practices. Answers to open-ended questions were coded to highlight key themes. RESULTS: We reached thematic saturation after interviewing 23 parents of 28 infants. Parent-generated items about barriers and facilitators to reading in the NICU and at home were each coded into 4 themes. Competing responsibilities and believing that reading was developmentally inappropriate were 2 shared themes for barriers to reading in both the NICU and home environment. Support people and understanding developmental impact were 2 shared themes for facilitators to reading in both the NICU and home environment. CONCLUSIONS: This qualitative work elucidates new targets for novel programs intended to support cognitive development of high-risk preterm infants. Addressing the unique, parent-reported barriers that we have identified and supporting adoption of the facilitators could increase word exposure for preterm infants, starting in the NICU and continuing at home.

Previous missed visits and independent risk of loss to follow-up in the high-risk neonatal follow-up clinic.

BACKGROUND: Neonatal intensive care unit (NICU) patients are at high risk for developmental delays. As a result, many are seen in neonatal follow-up (NFU) clinics. Disparities in NFU follow-up rates by social determinants of health exist. AIMS: Determine how the number of missed visits (composed of patient-canceled visits and no-show visits) relates to risk of loss to follow-up in the NFU clinic. STUDY DESIGN: Retrospective cohort study at a regional specialty center in the United States. SUBJECTS: 262 patients born between January 1, 2014, and December 31, 2017, who were referred to the NFU clinic. OUTCOME MEASURES: Logistic binomial regression was used to model risk ratio of loss to follow-up over two years, defined as not attending a recommended follow-up visit and not informing the clinic of a reason for discontinued care. RESULTS: Of 262 infants, 220 patients (84 %) were seen for at least one visit and 143 (65 %) completed follow-up. Younger maternal age, maternal smoking during pregnancy, maternal drug use during pregnancy, and public insurance were all associated with missing more visits. For each additional missed visit, the risk of loss to follow-up was 1.73 times higher unadjusted (95 % CI: 1.33, 2.26) and 1.81 times higher (95 % CI: 1.36, 2.40) after adjusting for confounders. The risk ratio of loss to follow-up for no-show visits was three times higher than that for patient-canceled visits. CONCLUSIONS: Each missed visit was independently associated with higher risk of loss to follow-up from NFU clinic, even after adjusting for other risk factors.

Unmet Parental Mental Health Service Needs in Neonatal Follow-Up Programs: Parent and Service Provider Perspectives.

Parental mental health services in neonatal follow-up programs (NFUPs) are lacking though needed. This study aimed to determine (1) the unmet mental health needs of parents and (2) the parent and provider perspectives on barriers and opportunities to increase mental health service access. Study 1: Parents in a central Canadian NFUP (N = 49) completed a mixed-method online survey (analyzed descriptively and by content analysis) to elucidate their mental health, related service use, barriers to service use, and service preferences. Study 2: Virtual focus groups with NFUP service providers (N = 5) were run to inform service improvements (analyzed by reflexive thematic analysis). The results show that parents endorsed a 2-4 times higher prevalence of clinically significant depression (59.2%), anxiety (51.0%), and PTSD (26.5%) than the general postpartum population. Most parents were not using mental health services (55.1%) due to resource insecurity among parents (e.g., time, cost) and the organization (e.g., staffing, training, referrals). Consolidating parents' and service providers' perspectives revealed four opportunities for service improvements: bridging services, mental health screening, online psychoeducation, and peer support. Findings clarify how a central Canadian NFUP can address parental mental health in ways that are desired by parents and feasible for service providers.

Beyond Survival: Challenges and Opportunities to Improve Neurodevelopmental Outcomes of Preterm Birth in Low- and Middle-Income Countries.

Low- and middle-income countries account for the greatest burden of preterm birth globally; however, there is limited understanding of neurodevelopmental outcomes of survivors within these resource-constrained settings. To accelerate progress, current priorities are to generate more high-quality data; engage with diverse local stakeholders including families of infants born preterm to identify neurodevelopmental outcomes meaningful to them within their contexts; and develop sustainable, scalable, high-quality models of neonatal follow-up, codesigned with local stakeholders, addressing the unique needs of low- and middle-income countries. Advocacy is critical to recognize optimal neurodevelopment as an "outcome of priority" along with the reduction in mortality.