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The WHO estimates that 15 million babies are born preterm every year. The Epicure studies, published in 1995 and 2006, showed an increase in survival for extremely preterm babies from 40% to 53% over the decade, but no difference in rates of morbidities despite technological advances over this time.1
The impact of having a premature baby on the family is also considerable, with parents incurring significant financial and emotional costs, as they endure long hospital admissions with parent–infant separation.
Prematurity is an independent risk factor for increased maternal anxiety, which can be reduced by increasing parental involvement in delivery of care.2 3 Despite this knowledge, the Picker Report, published in 2014 with 6000 parental responses from 88 neonatal units, noted that over a third of parents felt they were not involved in discussions about their baby’s management, and 60% felt unable to do as much skin-to-skin as they would like.4
With this in mind, should we change our approach to caring for our preterm population, by allowing parents to deliver part of their care?
What is family integrated care?
The concept of families providing nursing care for their loved ones is not new. This model has been used in low-resource settings for decades, primarily due to the lack of trained staff.
Levin was the first to describe the approach in a neonatal setting in Tallinn, Estonia.5 Termed the ‘Humane Neonatal Care Initiative’, it upholds that mothers’ and infants’ well-being is inextricably linked, citing the importance of maintaining the integrity of the ‘biological and psychological umbilicus’ to ensure optimum development for both. Here, after a baby is born, mothers move into the hospital and the parents provide all care until discharge.
Since then, the concept has assumed various, subtly different guises, including Family Centred Care (FCC), Family Nurture Intervention and Family Delivered Care and has evolved into what is now recognised as Family Integrated Care (FICare).
The differences between FICare and its predecessors are both subtle and important, with the overarching theme being a shift in emphasis of delivery of care and decision-making from staff to parents.6 This is achieved through implementation of the ‘Four pillars of FICare’ (figure 1), which mandates a change for staff enabling parents to be caregivers, delivery of a structured curriculum to parents and staff, availability of psychological support and modifications to the Neonatal Unit (NNU) environment to facilitate sustained contact between parents and their babies.6 7
Evidence has accumulated since Levin first presented his ideas. A range of studies have examined individual elements of the aforementioned care models, each appearing to have a positive impact on outcomes such as length of stay, cognitive development, attachment, parental stress and anxiety, weight gain, nosocomial infections and breast feeding. Importantly, none have highlighted any safety concerns about affording parents more involvement.5 8 9
The most recent publication by O’Brien et al adds to the evidence in support of FICare.10 Their multicentre international cluster-randomised control trial is the first to examine the efficacy of a prescriptive FICare model in a tertiary neonatal intensive care unit (NICU) setting.
Twenty-six units, across three countries, were randomised to deliver either FICare or standard care, with 1786 infants enrolled. Eligible infants were born at <33/40 and required low level or no respiratory support. The primary outcome was infant weight gain at 21 days post-enrolment. Secondary outcomes included measures of breast feeding, parental stress and anxiety and significant morbidity or mortality.
Weight at day 21 was significantly higher in the FICare group (adjusted difference in Z score 0.11 (SD 0.06–0.16) p<0.0001). Differences in favour of FICare were also noted for parental stress and anxiety (stress scores 2.3 (SD 0.8) vs 2.5 (SD 0.8), p<0.00043; anxiety scores 70.8 (SD 20.1) vs 74.2 (SD 19.9), p=0.0045) and breast feeding at discharge. No differences in morbidity, mortality or length of stay were observed.
The study has a great many strengths; it is the largest of its kind, it recruited more immature babies than previous studies and the intervention was meticulously planned. However, there are number of limitations.
Bias is a theme from the outset, mainly owing to the type of study and complexity of the intervention. Masking was not possible, perhaps hampering the validity of the self-reported stress and anxiety levels and breast feeding data. Participating NICUs were self-selected, on the basis of being committed to delivering FICare, precluding less motivated/well equipped units from participating. Furthermore, while there were few measurable differences between the groups, they were likely to have been inequitable pre-intervention, in terms of parental attitudes, since inclusion criteria were not universally applied. Parents in the FICare group had to commit to a primary caregiver being present for more thansix hours per day and to attend medical rounds and education sessions for more than 3 weeks. No equivalent pledge was asked of the standard care group. Lastly, parents were approached based on their ability to participate in a FICare programme, as perceived by the study group. Thus, where language barriers or significant parental morbidity existed, they were excluded. It could be argued that for such families, FICare may actually be the most valuable.
Due to the impressive scale of the study, ensuring consistency between units in their pre-existing standards of care, for example, feeding guidelines, was challenging, adding an element of confounding that was difficult to avoid.
While the primary outcome, for which the trial was powered, reached statistical significance, the clinical significance of weight gain at 21 days is less obvious. It may be a surrogate marker for general well-being but does not necessarily relate to long-term outcomes. Conversely, the data on breast feeding at discharge, which is perhaps more clinically relevant, suffered high loss-to-follow-up of participants. Only 60% of this data in the FICare group was complete, making the suggestion that FICare improves breast feeding, difficult to substantiate.
That said, the study demonstrates that FICare is a safe, replicable model that can be implemented across a range of settings and that more immature infants and their parents can benefit from it.
FICare was introduced to our special care neonatal unit in Leeds in May 2015 as a quality improvement project to improve breast feeding rates. The project required intensive staff education, some environmental changes to provide some parent facilities and a programme of parent education.
Over the course of the following year, 69 families accepted the invitation to join the programme. Neonatal staff coached, mentored and supported parents to be the central caregiver in their baby’s neonatal journey. Over the year breast feeding rates increased from 34% to 69%, and length of stay was reduced by seven days in babies less than 30 weeks gestation. The programme was very well received by staff and parents alike and has subsequently rolled out across the entire service as our standard model of care.
While the improvements have been impressive, the challenges are substantial. The greatest has been the culture change that FICare requires, among experienced and knowledgeable staff. However, the benefits to families have justified 1.5 whole time equivalent nurses to be seconded to project manage FICare, and this has had a significant impact allowing a quicker and smoother introduction of FiCare in the intensive care setting, due to their consistent presence and support. No formal parent evaluation has been carried out as yet, but parents are extremely positive about their experience. Early data suggest a significant decrease in primary care use from families that have experienced FICare.
Committing to deliver FICare is a significant undertaking for any neonatal service, requiring a culture change for both staff and families, as well as plentiful resources and, for some, it may not be a feasible option.6 7 An individualised strategy that acknowledges the differences between families, and highlights the most vulnerable groups while keeping the ‘four pillars of FICare’ at its core, may be the most pragmatic approach.
Patel et al experienced a number of challenges in their journey towards FICare, including concerns over safety and worries that the needs of the baby may become overlooked. None, however, were insurmountable, when a ‘ground-up’ strategy was adopted along with sustained communication between all involved, something the team emphasise as being key to their success.6
The longer term benefits of FICare have yet to be robustly demonstrated, and further studies are required examining its use in higher acuity settings, with more complex babies. However, current literature is promising, suggesting that the initial outlay may pay dividends for patient outcomes, parental well-being and staff satisfaction well into the future.
Contributors CH designed the editorial. AY and CH wrote the editorial. LM wrote the section on Leeds.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent Not required.
Provenance and peer review Commissioned; internally peer reviewed.
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