A parent-administered sensorimotor intervention for oral feeding in infants born preterm: A randomized clinical study.

AIM: To evaluate the effect of a parent-administered sensorimotor intervention (PASI) program on developmental outcomes of infants born preterm during their stay in the neonatal intensive care unit (NICU). METHOD: A randomized clinical study was conducted with 94 infants (mean gestational age 31 weeks [SD 2.2 weeks]; 1658 g [SD 478 g]; 49 males, 45 females) initially enrolled and randomly assigned to an experimental or a control group. Infants in the experimental group received a PASI, consisting of tactile input to oral structures, trunk/limbs, and non-nutritive sucking for 15 minutes, once a day, for 10 days. Infants in the control group received standard care. Outcomes included attainment of complete oral feeds, occurrence of direct breastfeeding at hospital discharge, and motor function assessed using the Test of Infant Motor Performance (TIMP). RESULTS: A total of 80 infants completed the study. Infants in the experimental group achieved complete oral feeds sooner (11.9 [SD 4.3] vs 15.3 [SD 6.5] days, p = 0.013), and a greater number of them received direct breastfeeds (22 vs 12, p = 0.010) than controls. Infants in both groups had equivalent motor functions scores on the TIMP (46.9 [SD 4.8], 46.8 [SD 8.4], p = 0.961). INTERPRETATION: A PASI program may enhance an infant's oral feeding skills. These findings provide evidence to advocate for the institution of PASI in NICUs.

Family integrated care: State of art and future perspectives.

Family integrated care (FICare) represents a contemporary approach to health care that involves the active participation of families within the healthcare team. It empowers families to acquire knowledge about the specialised care required for their newborns admitted to neonatal intensive care unit (NICU) and positions them as primary caregivers. Healthcare professionals in this model act as mentors and facilitators during the hospitalisation period. This innovative model has exhibited notable enhancements in both short- and long-term health outcomes for neonates, alongside improved psychological well-being for families and heightened satisfaction among healthcare professionals. Initially designed for stable premature infants and their families, FICare has evolved to include critically ill premature and full-term infants. Findings from recent studies affirm the safety and feasibility of FICare as a NICU-wide model of care, benefiting all infants and families. The envisioned expansion of FICare focusses on sustainability and extending its implementation, recognising the necessity for tailored adaptations to suit varying diverse cultural and socio-economic contexts.

Facilitators and constraints to family integrated care in low-resource settings informed the adaptation in Uganda.

AIM: Family Integrated Care (FICare) was developed in high-income countries and has not been tested in resource-poor settings. We aimed to identify the facilitators and constraints that informed the adaptation of FICare to a neonatal hospital unit in Uganda. METHODS: Maternal focus groups and healthcare provider interviews were conducted at Uganda's Jinja Regional Referral Hospital in 2020. Transcripts were analysed using inductive content analysis. An adaptation team developed Uganda FICare based on the identified facilitators and constraints. RESULTS: Participants included 10 mothers (median age 28 years) and eight healthcare providers (seven female, median age 41 years). Reducing healthcare provider workload, improving neonatal outcomes and empowering mothers were identified as facilitators. Maternal stress, maternal difficulties in learning new skills and mistrust of mothers by healthcare providers were cited as constraints. Uganda FICare focused on task-shifting important but neglected patient care tasks from healthcare providers to mothers. Healthcare providers learned how to respond to maternal concerns. Intervention material was adapted to prioritise images over text. Mothers familiar with FICare provided peer-to-peer support to other mothers. CONCLUSION: Uganda FICare shares the core values of FICare but was adapted to be feasible in low-resource settings.

Benefits and Challenges of Implementing an Adaptation of Family Integrated Care in a Ugandan Setting.

BACKGROUND: Family Integrated Care (FICare) integrates parents as partners in neonatal intensive care unit care. Our team adapted and implemented this approach in a Ugandan unit for hospitalized neonates. PURPOSE: This qualitative descriptive study examined the perceptions of mothers and healthcare professionals (HCPs) of the benefits and challenges of this new approach to care. METHODS: Fifty-one mothers of hospitalized neonates born weighing greater than 2000 g participated in the program. They were taught to assess neonate danger signs, feeding, and weight. After discharge, a subsample (n = 15) participated in focus groups to explore benefits and challenges of their participation in care. Interviews with 8 HCPs were also conducted for the same purpose. Transcripts from focus groups and interviews were analyzed using inductive content analysis to describe the benefits and challenges from the perspectives of mothers and HCPs. RESULTS: For mothers a benefit was decreased stress. Both mothers and HCPs reported that the knowledge and skills mothers acquired were a benefit as was their ability to apply these to the care of their neonate. Improved relations between mothers and HCPs were described, characterized by greater exchange of information and HCPs' attentiveness to mothers' assessments. Mothers felt ready for discharge and used their knowledge at home. HCPs noted a decrease in their workload. Challenges included the need for mothers to overcome fears about performing the tasks, their own well-being and literacy skills, and access to equipment. IMPLICATIONS FOR PRACTICE: Mothers' participation in their neonates' care can have benefits for them and their neonate.

Skin-to-skin care (SSC) for term and preterm infants.

Skin-to-skin care (SSC) is an important part of parent and infant care during the neonatal period and into infancy. SSC should be initiated immediately after birth and practiced as a standard of care in all settings, as well as in the home. There is strong evidence that SSC has a positive effect on breastfeeding and human milk feeding in both term and preterm infants, as well as on mortality, cardiopulmonary stability, and thermoregulation. SSC reduces pain and infant stress, enhances parent-infant bonding, has neurodevelopmental benefits, and has positive effects on parental mental health. The safety and feasibility of providing SSC has been established in term and preterm infants, and SSC is recommended as best practice for all infants. The benefits of SSC outweigh the risks in most situations, and despite challenges, care providers should implement procedures and accommodations to ensure that SSC occurs as a safe and positive experience for the parent, family, infant, and health care team. This statement includes all families as defined and determined by themselves, and recognizes that health communication, language, and terminology must be individualized to meet specific family needs by the health care team.

Les soins peau-à-peau chez les nourrissons à terme et prématurés.

Les soins peau-à-peau (SPP) sont un aspect important des soins au parent et au nourrisson pendant la période néonatale et la première enfance. Ils doivent être entrepris immédiatement après la naissance et faire partie des soins standards dans tous les milieux, y compris à la maison. Selon de solides données probantes, les SPP ont un effet positif sur l'allaitement et l'alimentation par du lait humain, tant chez les nourrissons à terme que prématurés, de même que sur la mortalité, la stabilité cardiorespiratoire et la thermorégulation. Les SPP réduisent la douleur et le stress chez les nourrissons, accroissent l'attachement entre le parent et son nourrisson et ont des effets bénéfiques sur le neurodéveloppement de l'enfant ainsi que sur la santé mentale des parents. Le caractère sécuritaire et la faisabilité des SPP sont établis chez les nourrissons à terme et prématurés, et ces soins sont recommandés dans le cadre d'une pratique exemplaire auprès de tous les nourrissons. Les avantages des SPP sont supérieurs aux risques dans la plupart des situations, et malgré les défis qui y sont associés, les dispensateurs de soins devraient adopter des protocoles et prévoir des adaptations pour s'assurer que les SPP soient une expérience positive et sécuritaire pour le parent, la famille, le nourrisson et l'équipe soignante. Le présent document de principes s'adresse à toutes les familles, telles qu'elles se définissent et se déterminent elles-mêmes, et tiennent compte de l'importance de personnaliser la communication, le langage et la terminologie en matière de santé pour que l'équipe soignante réponde aux besoins particuliers de la famille.

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.

Supporting parents as essential care partners in neonatal units during the SARS-CoV-2 pandemic.

AIM: To review the evidence on safety of maintaining family integrated care practices and the effects of restricting parental participation in neonatal care during the SARS-CoV-2 pandemic. METHODS: MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched from inception to the 14th of October 2020. Records were included if they reported scientific, empirical research (qualitative, quantitative or mixed methods) on the effects of restricting or promoting family integrated care practices for parents of hospitalised neonates during the SARS-CoV-2 pandemic. Two authors independently screened abstracts, appraised study quality and extracted study and outcome data. RESULTS: We retrieved 803 publications and assessed 75 full-text articles. Seven studies were included, reporting data on 854 healthcare professionals, 442 parents, 364 neonates and 26 other family members, within 286 neonatal units globally. The pandemic response resulted in significant changes in neonatal unit policies and restricting parents' access and participation in neonatal care. Breastfeeding, parental bonding, participation in caregiving, parental mental health and staff stress were negatively impacted. CONCLUSION: This review highlights that SARS-CoV-2 pandemic-related hospital restrictions had adverse effects on care delivery and outcomes for neonates, families and staff. Recommendations for restoring essential family integrated care practices are discussed.

Evaluating the effect of Family Integrated Care on maternal stress and anxiety in neonatal intensive care units.

Objective: To identify how Family Integrated Care (FICare) affected maternal stress and anxiety. Study Design: This secondary analysis of the FICare cluster randomised controlled trial included infants born between 1 April 2013 and 31 August 2015 at ≤33 weeks' gestation. Mothers completed the PSS:NICU and STAI questionnaires at enrolment and study day 21. Results: 1383 mothers completed the surveys at one or both time-points. The mean PSS:NICU and STAI scores at day 21 were significantly lower in the FICare mothers than controls (PSS:NICU mean [standard deviation] FICare 2.32 [0.75], control 2.48 [0.78], p = 0.0005; STAI FICare 70.8 [20.0], control 74.2 [19.6], p = 0.0004). The sights and sounds, looks and behaviour, and parental role PSS:NICU subscales and the state and trait STAI subscales were all significantly different between FIC are and controls at day 21. The magnitude of change in all stress and anxiety subscales was greater in the FICare group than controls. These differences remained significant after adjustment for confounders with the greatest change in the parental role (least-squares mean [95% confidence interval] FICare -0.65 [-0.72, 0.57], control -0.31 [-0.38, -0.24], p < 0.0001) and state anxiety subscales. Conclusion: FICare is effective at reducing NICU-related maternal stress and anxiety.

Early-Onset Invasive Candidiasis in Extremely Low Birth Weight Infants: Perinatal Acquisition Predicts Poor Outcome.

BACKGROUND: Neonatal invasive candidiasis (IC) presenting in the first week of life is less common and less well described than later-onset IC. Risk factors, clinical features, and disease outcomes have not been studied in early-onset disease (EOD, ≤7 days) or compared to late-onset disease (LOD, >7 days). METHODS: All extremely low birth weight (ELBW, <1000 g) cases with IC and controls from a multicenter study of neonatal candidiasis enrolled from 2001 to 2003 were included in this study. Factors associated with occurrence and outcome of EOD in ELBW infants were determined. RESULTS: Forty-five ELBW infants and their 84 matched controls were included. Fourteen (31%) ELBW infants had EOD. Birth weight <750 g, gestation <25 weeks, chorioamnionitis, and vaginal delivery were all strongly associated with EOD. Infection with Candida albicans, disseminated disease, pneumonia, and cardiovascular disease were significantly more common in EOD than in LOD. The EOD case fatality rate (71%) was higher than in LOD (32%) or controls (15%) (P = .0001). The rate of neurodevelopmental impairment and mortality combined was similar in EOD (86%) and LOD (72%), but higher than in controls (32%; P = .007). CONCLUSIONS: ELBW infants with EOD have a very poor prognosis compared to those with LOD. The role of perinatal transmission in EOD is supported by its association with chorioamnionitis, vaginal delivery, and pneumonia. Dissemination and cardiovascular involvement are common, and affected infants often die. Empiric treatment should be considered for ELBW infants delivered vaginally who have pneumonia and whose mothers have chorioamnionitis or an intrauterine foreign body.

Evaluation of the Family Integrated Care model of neonatal intensive care: a cluster randomized controlled trial in Canada and Australia.

BACKGROUND: Admission to the neonatal intensive care unit (NICU) may disrupt parent-infant interaction with adverse consequences for infants and their families. Several family-centered care programs promote parent-infant interaction in the NICU; however, all of these retain the premise that health-care professionals should provide most of the infant's care. Parents play a mainly supportive role in the NICU and continue to feel anxious and unprepared to care for their infant after discharge. In the Family Integrated Care (FICare) model, parents provide all except the most advanced medical care for their infants with support from the medical team. Our hypothesis is that infants whose families complete the FICare program will have greater weight gain and better clinical and parental outcomes compared with infants provided with standard NICU care. METHODS/DESIGN: FICare is being evaluated in a cluster randomized controlled trial among infants born at ≤ 33 weeks' gestation admitted to 19 Canadian, 6 Australian, and 1 New Zealand tertiary-level NICU. Trial enrollment began in April, 2013, with a target sample size of 675 infants in each arm, to be completed by August, 2015. Participating sites were stratified by country, and by NICU size within Canada, for randomization to either the FICare intervention or control arm. In intervention sites, parents are taught how to provide most of their infant's care and supported by nursing staff, veteran parents, a program coordinator, and education sessions. In control sites standard NICU care is provided. The primary outcome is infants' weight gain at 21 days after enrollment, which will be compared between the FICare and control groups using Student's t-test adjusted for site-level clustering, and multi-level hierarchical models accounting for both clustering and potential confounders. Similar analyses will examine secondary outcomes including breastfeeding, clinical outcomes, safety, parental stress and anxiety, and resource use. The trial was designed, is being conducted, and will be reported according to the CONSORT 2010 guidelines for cluster randomized controlled trials. DISCUSSION: By evaluating the impact of integrating parents into the care of their infant in the NICU, this trial may transform the delivery of neonatal care. TRIAL REGISTRATION: NCT01852695 , registered December 19, 2012.

Perceptions of health professionals on pain in extremely low gestational age infants.

Extremely low gestational age infants (<28 weeks at birth) experience significant pain from repeated therapeutic procedures while hospitalized in the neonatal intensive care unit. As part of a program of research examining pain in preterm infants, we conducted a qualitatively driven mixed-methods design, supplemented with a qualitative and quantitative component, to understand how health care professionals (HCPs) assess and manage procedural pain for tiny and underdeveloped preterm infants. Fifty-nine HCPs from different disciplines across four tertiary-level neonatal units in Canada participated in individual or focus group interviews and completed a brief questionnaire. Four themes from the content analysis were (a) subtlety and unpredictability of pain indicators, (b) infant and caregiver attributes and contextual factors that influence pain response and practices, (c) the complex nature of pain assessment, and (d) uncertainty in the management of pain. The information gleaned from this study can assist in identifying gaps in knowledge and informing unit-based and organizational knowledge translation strategies for this vulnerable population.

Reduction in developmental coordination disorder with neonatal caffeine therapy.

OBJECTIVE: To determine the effect of neonatal caffeine treatment on rates of developmental coordination disorder (DCD). STUDY DESIGN: Children in the Caffeine for Apnea of Prematurity trial were assessed for motor performance (Movement Assessment Battery for Children [MABC]), clinical signs of cerebral palsy, and Full-Scale IQ at 5 years of age by staff who were unaware of the children's treatment group. DCD was defined as MABC<5th percentile in children with a Full-Scale IQ>69 who did not have a diagnosis of cerebral palsy. RESULTS: There were 1433 children with known MABC corrected-age percentile as well as known Full-Scale IQ at 5 years and cerebral palsy status, of whom 735 had been randomly assigned to caffeine and 698 to placebo therapy. The rate of DCD was lower in those treated with caffeine (11.3%) than in the placebo group (15.2%) (OR adjusted for center and baseline covariates, 0.71, 95% CI, 0.52-0.97; P=.032). CONCLUSIONS: Neonatal caffeine therapy for apnea of prematurity reduces the rate of DCD at 5 years of age. As more children have DCD than have cerebral palsy, this is an important additional benefit from neonatal caffeine treatment.

Invasive candidiasis in low birth weight preterm infants: risk factors, clinical course and outcome in a prospective multicenter study of cases and their matched controls.

BACKGROUND: This multicenter prospective study of invasive candidiasis (IC) was carried out to determine the risk factors for, incidence of, clinical and laboratory features, treatment and outcome of IC in infants of birth weight <1250 g. METHODS: Neonates <1250 g with IC and their matched controls (2:1) were followed longitudinally and descriptive analysis was performed. Survivors underwent neurodevelopmental assessment at 18 to 24 months corrected age. Neurodevelopmental impairment (NDI) was defined as blindness, deafness, moderate to severe cerebral palsy, or a score <70 on the Bayley Scales of Infant Development 2nd edition. Multivariable analyses were performed to determine risk factors for IC and predictors of mortality and NDI. RESULTS: Cumulative incidence rates of IC were 4.2%, 2.2% and 1.5% for birth-weight categories <750 g, <1000 g, <1500 g, respectively. Forty nine infants with IC and 90 controls were enrolled. Necrotizing enterocolitis (NEC) was the only independent risk factor for IC (p=0.03). CNS candidiasis occurred in 50% of evaluated infants, while congenital candidiasis occurred in 31%. Infants with CNS candidiasis had a higher mortality rate (57%) and incidence of deafness (50%) than the overall cohort of infants with IC. NDI (56% vs. 33%; p=0.017) and death (45% vs. 7%; p=0.0001) were more likely in cases than in controls, respectively. IC survivors were more likely to be deaf (28% vs. 7%; p=0.01). IC independently predicted mortality (p=0.0004) and NDI (p=0.018). CONCLUSION: IC occurred in 1.5% of VLBW infants. Preceding NEC increased the risk of developing IC. CNS candidiasis is under-investigated and difficult to diagnose, but portends a very poor outcome. Mortality, deafness and NDI were independently significantly increased in infants with IC compared to matched controls.

Practice recommendations regarding parental presence in NICUs during pandemics caused by respiratory pathogens like COVID-19.

Aim: To co-create parental presence practice recommendations across Canadian NICUs during pandemics caused by respiratory pathogens such as COVID-19. Methods: Recommendations were developed through evidence, context, Delphi and Values and Preferences methods. For Delphi 1 and 2, participants rated 50 items and 20 items respectively on a scale from 1 (very low importance) to 5 (very high). To determine consensus, evidence and context of benefits and harms were presented and discussed within the Values and Preference framework for the top-ranked items. An agreement of 80% or more was deemed consensus. Results: After two Delphi rounds (n = 59 participants), 13 recommendations with the highest rated importance were identified. Consensus recommendations included 6 strong recommendations (parents as essential caregivers, providing skin-to-skin contact, direct or mothers' own expressed milk feeding, attending medical rounds, mental health and psychosocial services access, and inclusion of parent partners in pandemic response planning) and 7 conditional recommendations (providing hands-on care tasks, providing touch, two parents present at the same time, food and drink access, use of communication devices, and in-person access to medical rounds and mental health and psychosocial services). Conclusion: These recommendations can guide institutions in developing strategies for parental presence during pandemics caused by respiratory pathogens like COVID-19.

A pilot cohort analytic study of Family Integrated Care in a Canadian neonatal intensive care unit.

BACKGROUND: We have developed a Family Integrated Care (FIC) model for use in a neonatal intensive care unit (NICU) where parents provide most of the care for their infant, while nurses teach and counsel parents. The objective of this pilot prospective cohort analytic study was to explore the feasibility, safety, and potential outcomes of implementing this model in a Canadian NICU. METHODS: Infants born ≤ 35 weeks gestation, receiving continuous positive airway pressure or less respiratory support, with a primary caregiver willing and able to spend ≥ 8 hours a day with their infant were eligible. Families attended daily education sessions and were mentored at the bedside by nurses. The primary outcome was weight gain, as measured by change in z-score for weight 21 days after enrolment. For each enrolled infant, we identified two matched controls from the previous year's clinical database. Differences in weight gain between the two groups were analyzed using a linear mixed effects multivariable regression model. We also measured parental stress levels using the Parental Stress Survey: NICU, and interviewed parents and nurses regarding their experiences with FIC. RESULTS: This study included 42 mothers and their infants. Of the enrolled infants, matched control data were available for 31 who completed the study. The rate of change in weight gain was significantly higher in FIC infants compared with control infants (p < 0.05). There was also a significant increase in the incidence of breastfeeding at discharge (82.1 vs. 45.5%, p < 0.05). The mean Parental Stress Survey: NICU score for FIC mothers was 3.06 ± 0.12 at enrolment, which decreased significantly to 2.30 ± 0.13 at discharge (p < 0.05). Feedback from the parents and nurses indicated that FIC was feasible and appropriately implemented. CONCLUSIONS: This study suggests that the FIC model is feasible and safe in a Canadian healthcare setting and results in improved weight gain among preterm infants. In addition, this innovation has the potential to improve other short and long-term infant and family outcomes. A multi-centre randomized controlled trial is needed to further evaluate the efficacy of FIC in the Canadian context.