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.

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

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

Hospitalising preterm infants in single family rooms versus open bay units: A systematic review and meta-analysis of impact on parents.

BACKGROUND: Many parents develop stress-related symptoms and depression when their preterm infant is hospitalised in the neonatal intensive care unit (NICU) after birth. We reviewed the evidence of parent well-being with preterm infants hospitalised in single family rooms (SFRs) or in open bay neonatal units (OBUs). METHODS: For this systematic review and meta-analysis, we searched MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials (CENTRAL), Web of Science, Clinicaltrials.gov, and International Clinical Trials Registry Platform (ICTRP) databases from inception through 22 November 2019 using controlled terms and text words related to prematurity and NICU-design. We included randomised and non-randomised studies comparing outcomes in parents with preterm infants admitted to SFRs or OBUs. Methodological quality was assessed using Cochrane Collaboration's Risk of Bias Tool for randomised controlled trials and the Risk of Bias Tool for Non-Randomised Studies of Interventions (ROBINS-I). Outcomes included: parental stress, satisfaction, participation (presence/involvement/skin-to-skin care), self-efficacy, parent-infant-bonding, depression, anxiety, post-traumatic stress, empowerment, and degree of family-centred care. Summary estimates were calculated using random effects models with standardised mean differences (SMDs). PROSPERO registration: CRD42016050643. FINDINGS: We identified 614 unique publications. Eleven study populations (1, 850 preterm infants, 1, 549 mothers and 379 fathers) were included. All but one study were at serious to critical risk of bias. SFRs were associated with higher levels of parental presence, involvement, and skin-to-skin care. Upon discharge, SFRs were associated with lower stress levels (n = 828 parents, SMD-0·30,95%CI -0·50;-0·09, p<0·004, I2=46%), specifically NICU-related stress (n = 573, SMD-0·42,95%CI -0·61;-0·23, p<0·0001, I2=0%). In majority of studies higher levels of empowerment, family-centred care, and satisfaction was present with SFRs. No differences were found for anxiety, parent-infant bonding, or self-efficacy. Depression was high (up to 29%) but not different between settings. No studies described post-traumatic stress. INTERPRETATION: Single family rooms seem to facilitate parental presence, involvement, skin-to-skin care, and reduce NICU-related parental stress.

Family Integrated Care for Preterm Infants.

Parent-infant separation is a major source of stress for parents of hospitalized preterm infants and has negative consequences for infant health and development. Family Integrated Care (FICare) uses a strengths-based approach, based on family-centered care principles to promote parental empowerment, learning, shared decision making, and positive parent-infant caregiving experiences. Outcomes of FICare include increased self-efficacy upon discharge and improved parent-infant relationships and infant developmental outcomes. In this article, the authors describe the FICare model and emerging evidence regarding outcomes of FICare for infants and families and discuss challenges and opportunities in implementing and maintaining high-quality FICare.