The clinical care of the preterm infant in Neonatal Intensive Care Units (NICUs) has historically been provided by medical, nursing, and allied healthcare providers (1). Whilst this specialised care has provided a structured approach which aligns with advancements in technology, the intensity of the NICU environment and the acuity of the infant, coupled with restricted visitation, prolonged separation and minimal physical contact, has resulted in a broad range of poor health outcomes for parents. For example, delayed infant attachment and bonding, high parental stress, and an increased risk of postnatal depression and post-traumatic stress disorder (1–4). From a mother’s perspective, the premature delivery and loss of the third trimester can be emotionally traumatic and physically challenging; their role following the preterm birth is often ill-defined which can potentiate a degree of vulnerability and isolation as they navigate the hospital system. For the preterm infant, the impact can also be significant with evidence of behavioural issues, disability, neurodevelopmental delays, inadequate or variable weight gain, higher rates of nosocomial infection and increased rates of hospital re-admission often observed (1, 2, 5).
In the 1970s, measures designed to advance the clinical outcomes of NICU standard practice provided to preterm infants were first observed in Tallinn, Estonia (6). In this revolutionary model, all non-technical infant care was performed by mothers. These guiding principles have led to the development of the Family Integrated Care program (FICare) which acknowledges the significant and critical contributions of parents in improving the health outcomes of the preterm infant (1, 2, 7, 8). The integration of parents into the direct care of the preterm infant is broadly based on a shared-care philosophy where parents are viewed as active partners with the healthcare team; emphasis is placed on the physical interactions that occur between the parent and infant, and the relationships formed between the healthcare team and parents (8). To support parents and family members throughout the preterm infant hospitalisation and in preparation for hospital discharge, clinical staff provide ongoing education within a safe environment to enable a successful role transition to that of primary caregiver following hospital discharge (2, 3, 8). Stelwagen et al. (4) described the ability of parents to develop the skills required to care for the preterm infant following discharge, confidence and control in influencing the health outcomes of the infant and having insight into the infant’s condition as critical factors of FICare program success. Conversely, where self-efficacy was challenged due to power struggles between parents and staff, participants felt that this considerably impacted their confidence.
An alternate model often delivered in the NICU is the Family Centred Care (FCC) program. The FCC program (6, 7) has subtle differences to FICare, which are mostly seen in the degree to which parents are actively involved in providing direct care to the infant; the FICare program requiring more direct involvement. FCC programs are also not conceptually well understood in terms of how the parents are embedded into the care protocols (6, 7, 9). With this understanding, our review will only consider literature that describes the involvement of parents or family members who have participated in a NICU FICare program only, and not FCC.
A review of the published literature based on NICU FICare programs revealed that most studies were observational or randomised controlled trials (RCTs) that focussed on improving the health outcomes of the infant (1, 2, 8). Commonly reported outcome measures in these studies included NICU length of stay (LOS), rate of hospital re-admission, infant weight gain and duration of breastfeeding. From a qualitative perspective, there has been a few studies that have narratively described the experiences of parents and families of preterm infants who have participated in FICare programs (1, 2).
A preliminary search of PROSPERO registered protocols was conducted on 19 March 2021 to determine the extent of work undertaken in the proposed review area. Broad search terms were used to identify systematic review protocols of similar content. The search revealed six registered review protocols which were examined for similarity. However, none were found to be comparable to our proposal or based on a qualitative interpretation of perceptions and experiences. All review protocols identified in PROSPERO reported quantitative measures only to determine and synthesise outcome findings, and two protocols excluded qualitative studies from the search. The Cochrane library was also examined on 25 March 2021. The search terms used to review work undertaken in this area were, ‘Family Integrated Care in NICU’. The search did not retrieve any registered Cochrane reviews, but 31 trials. A screening of the trials via title only, identified one article which required further exploration. However, this item was not a published systematic review or protocol. Following a comprehensive review of PROSPERO and the Cochrane Library, the originality of our proposed qualitative systematic review was confirmed.
The overall aim of the proposed review is to explore the experiences of parents and families of preterm infants participating in a FICare program delivered in a NICU. The review has three primary objectives:
To explore the perceptions and experiences of parents and families of preterm infants who are participating in a FICare program delivered in a NICU;
To describe the facilitators and barriers experienced by parents and families of preterm infants participating in a NICU FICare program; and
To appraise and synthesise qualitative findings to better understand where improvements to program protocols could potentially be made.
What are the perceptions and experiences of parents and families of preterm infants who participate in Family Integrated Care Programs in Neonatal Intensive Care Units?