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.

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.

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.

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.

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.

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.

A Pilot Study of Family-Integrated Care (FICare) in Critically Ill Preterm and Term Infants in the NICU: FICare Plus.

Family-integrated care (FICare) is associated with improved developmental outcomes and decreased parental mental health risks in stable preterm infants. However, less is known about its application in critically ill infants who are at greater risk for adverse outcomes. The objective of this study was to assess the safety and feasibility of implementation of an augmented FICare program, FICare Plus, in critically ill infants in the first few weeks of life. Resources were specifically developed for staff and parents to support earlier parental engagement in infant care. Infant health outcomes and standardized measures of parental stress, anxiety and parenting self-efficacy were also collected using standardized questionnaires: State -Trait Anxiety Inventory (STAI), Parental Stressor Scale: NICU (PSS: NICU), Perceived Parenting Self-Efficacy Tool and Family Centered Care Survey. The t-test or Wilcoxon rank-sum test were used to compare continuous variables, while the Chi-square or Fisher exact test were used for categorical variables, respectively. In this prospective cohort study, 41 critically ill infants were enrolled: 17 in standard care (SC) and 24 in the FICare Plus group. The tools and procedures developed for FICare Plus successfully supported greater engagement in the care of their infants with no increase in adverse events and no increase in parental stress. Parents in the FICare Plus cohort felt confident to participate in their infant's care. The staff also found this model of care acceptable and well adopted. Preliminary measures of infant efficacy were similar in both groups. Total anxiety scores were high among all parents at enrollment (87 (67-94) vs. 70.5 (66-86); p-value 0.22). However, the scores prior to discharge were lower in FICare Plus group (78 (71-90) vs. 63 (52-74.5); p-value 0.02). This pilot study showed that it is feasible and safe to implement family-integrated care in critically ill infants.

Building Connections with Families: Implementation of a Video-Messaging Service in the Neonatal Intensive Care Unit.

BACKGROUND: Family involvement is vital to optimize the care of infants in the neonatal intensive care unit (NICU). Various technologies have been used to support communication with parents in the NICU. The purpose of this study was to evaluate the parent and staff experience and perception of the use of a cloud-based video-messaging service in our NICU. METHODS: This study was a single center observational study conducted at Mount Sinai Hospital, Toronto, Canada. Following the implementation of a video-messaging service, parent and staff surveys were distributed to evaluate their experience and perception. RESULTS: Parent responses were positive with respect to how the service helped them feel: closer to their infant (100%) and reassured about their infant's care (100%). Nursing staff responses indicated that they perceived a benefit to parents (100%) and to their building a relationship with families (79%). However, they also identified time constraints (85%) and the use of the technology hardware (24%) as challenges. CONCLUSIONS: The use of an asynchronous video-messaging service was perceived as beneficial to both parents and staff in the NICU. Complaints pertained to the impact of the technology on nursing workflow and the difficulty using the hardware provided for use of the service.

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

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

Family Integrated Care in Uganda: a feasibility study.

OBJECTIVE: To determine the feasibility of adapting Family Integrated Care to a neonatal hospital unit in a low-income country. DESIGN: Single-centre, pre/post-pilot study of an adapted Family Integrated Care programme in Uganda (UFICare). SETTING: Special Care Nursery at a Ugandan hospital. PATIENTS: Singleton, inborn neonates with birth weight ≥2 kg. INTERVENTIONS: As part of UFICare, mothers weighed their infant daily, assessed for severe illness ('danger signs') twice daily and tracked feeds. MAIN OUTCOME MEASURES: Feasibility outcomes included maternal proficiency and completion of monitoring tasks. Secondary outcomes included maternal stress, discharge readiness and post-discharge healthcare seeking. RESULTS: Fifty-three mother-infant dyads and 51 mother-infant dyads were included in the baseline and intervention groups, respectively. Most mothers were proficient in the tasks 2-4 days after training (weigh 43 of 51; assess danger signs 49 of 51; track feeds 49 of 51). Mothers documented their danger sign assessments 82% (IQR 71-100) of the expected times and documented feeds 83% (IQR 71-100) of hospital days. In the baseline group, nurses weighed babies 29% (IQR 18-50) of hospitalised days, while UFICare mothers weighed their babies 71% (IQR 57-80) of hospitalised days (p<0.001). UFICare mothers had higher Readiness for Discharge scores compared with the baseline group (baseline 6.8; UFICare 7.9; p<0.001). There was no difference in maternal stress scores or post-discharge healthcare seeking. CONCLUSIONS: Ugandan mothers can collaborate in the medical care of their hospitalised infant. By performing tasks identified as important for infant care, mothers felt more prepared to care for their infant at discharge.

Family integrated care: very preterm neurodevelopmental outcomes at 18 months.

OBJECTIVE: To examine whether the family integrated care (FICare) programme, a multifaceted approach which enables parents to be engaged as primary caregivers in the neonatal intensive care unit, impacts infant neurodevelopment and growth at 18 months' corrected age. DESIGN/METHODS: Prospective cohort study of infants born <29 weeks' gestational age (GA) who participated in the FICare cluster randomised control trial (cRCT) and were assessed in the Canadian Neonatal Follow-Up Network (CNFUN). The primary outcome measure, Cognitive or Language composite score <85 on the Bayley-III, was compared between FICare exposed and routine care children using logistic regression, adjusted for potential confounders and employing generalised estimation equations to account for clustering of infants within sites. RESULTS: Of 756 infants <29 weeks' GA in the FICare cRCT, 505 were enrolled in CNFUN and 455 were assessed (238 FICare, 217 control). Compared with controls, FICare infants had significantly higher incidence of intraventricular haemorrhage (IVH) (19.5% vs 11.7%, p=0.024) and higher proportion of employed mothers (76.6% vs 73.6%, p=0.043). There was no significant difference in the odds of the primary outcome (adjusted OR: 0.92 (0.59 to 1.42) FiCare vs Control) on multivariable analyses adjusted for GA, IVH and maternal employment. However, Bayley-III Motor scores (adjusted difference in mean (95% CI) 3.87 (1.22 to 6.53) and body mass index 0.67 (0.36 to 0.99) were higher in the FICare group. CONCLUSIONS: Very preterm infants exposed to FICare had no significant difference in incidence of cognitive or language delay but had better motor development. TRIAL REGISTRATION NUMBER: Participants in this cohort study were previously enrolled in a registered trial: NCT01852695.

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.

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

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

Family integrated care: Supporting parents as primary caregivers in the neonatal intensive care unit.

Family integrated care (FICare) is a collaborative model of neonatal care which aims to address the negative impacts of the neonatal intensive care unit (NICU) environment by involving parents as equal partners, minimizing separation, and supporting parent-infant closeness. FICare incorporates psychological, educational, communication, and environmental strategies to support parents to cope with the NICU environment and to prepare them to be able to emotionally, cognitively, and physically care for their infant. FICare has been associated with improved infant feeding, growth, and parent wellbeing and self-efficacy; important mediators for long-term improved infant neurodevelopmental and behavioural outcomes. FICare implementation requires multi-disciplinary commitment, staff motivation, and sufficient time for preparation and readiness for change as professionals relinquish power and control to instead develop collaborative partnerships with parents. Successful FICare implementation and culture change have been applied by neonatal teams internationally, using practical approaches suited to their local environments. Strategies such as parent and staff meetings and relational communication help to break down barriers to change by providing space for the co-creation of knowledge, the negotiation of caregiving roles and the development of trusting relationships. The COVID-19 pandemic highlighted the vulnerability within programs supporting parental presence in neonatal units and the profound impacts of parent-infant separation. New technologies and digital innovations can help to mitigate these challenges, and support renewed efforts to embed FICare philosophy and practice in neonatal care during the COVID-19 recovery and beyond.

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.