Working Together to Provide the Highest Standard of Care for Babies and Families

Working together to provide the highest standard of care for babies and families

Title / A review of Family Integrated Care (FiCare) - A Case for change across the NWNODN?
Author / Emma Kyte
Target Audience / NWNODN Management Team
All NWNODN employees
NOPG and Board members
Version / 4
Created – date / 16/01/17
Date of Issue
File name and path
Document Status / draft
Description / Paper detailing the benefits and resources required when implementing FiCare to clinical practice.
Document History:
Date / Version / Author / Notes
16/01/17 / V1 / E Kyte
23/01/17 / V2 / E Kyte / KM comments added
20/04/17 / V3 / E Kyte / KM comments added
19/05/17 / V4 / E Kyte / CT amendments made

Contents

Table A: Summary of papers’ key points 3

1. Integrated Care within the NHS 4

2. Background to FiCare 4

3. Principles of Family Integrated Care 5

4.Benefits of FiCare

4.1 Table of benefits for the neonate 5

4.2 Table of the benefits of FiCare for the families and healthcare professionals 5

4.3 table of Data from FiCare project Implemented at St James’s Hospital Leeds. 6

4.4 Benefits for the whole healthcare system 6

4.4.1 Examples of care provided by families with appropriate support outside of the hospital setting 7

5. Families and FiCare 8

6. The Picker Report and FiCare 8

7. Potential issues to be considered around FiCare 10

8. How does FiCare fit with NWNODN work Programme/ national drivers? 11

Table 8.1 Areas of neonatal care that could be improved by FiCare Implementation and their link to the NWNODN 2016/17 Work Programme. 11

9. What is needed to Implement FiCare? 13

10. Making FiCare a Reality – proposed plan for implementing FiCare 13

11. Conclusion 13

12. References 14

Summary of the papers’ key points

Health benefits to the neonate /

• Increased breast feeding rates and babies receiving breast milk at discharge.
• Improved health outcomes including less reported instances of: infection, NEC, ROP & Incident reports.
• Improved infant weight gain
• Reduced length of stay (LOS).
• Development of community based care allowing more complex health needs to be managed in the patient’s home.
• Lower rates of readmission to hospital following discharge from the neonatal unit.

Benefits to families /

• Improved Maternal & Family Mental health.
• The model allows greater opportunity for families to bond with their baby.
• The continuity of care provided by parents contributes to parent’s own good health and reduces re-admission rate once discharged from hospital.
• FiCare aids early discharge from the neonatal unit and ensures the transition home is less stressful for families as they are already used to providing care for their baby.

Benefits to staff /

• Alleviates workforce challenges: FiCare advocates increased parental involvement in care giving which allows staff more time to undertake tasks required of registered practitioners e.g. medication administration/ education/training etc.
• Improved job satisfaction and reduced work related stress.
• Less incident reports generated in units implementing FiCare.
• FiCare builds upon the principles set by BLISS and UNICEF ensuring care is focused on benefitting babies, families and staff.
• FiCare helps neonatal units to meetnational standards for care i.e. NNAP measures, BAPM, NHS Outcomes framework etc.

Benefits to the whole healthcare system /

• In times of financial austerity within the NHS incorporating new models of care that are effective and cost efficient to implement is a priority for both clinicians and managers.
• Providing care in different but appropriate ways and settings fits with the Neonatal Service Specification which advocates the principle of Operational Delivery Networks (ODNs) of providing the ‘Right Care, in the right place’.
• The principles behind the FiCare model potentially extends way beyond the NICU into other areas of healthcare, as the model demonstrates healthcare provision is a partnership between healthcare professionals and the patient and /or families.

1. Integrated Care within the NHS

The Health and Social Care Act (2012) emphasises the importance of integrated care across the National Health Service (NHS). ‘Integrated care is not about structures, organisations or pathways – it is about better outcomes and experiences for services users’ (NHS Future Forum, 2016). Integrated care is growing in momentum across the whole NHS from diabetes and asthma, to care of the elderly and paediatrics. Integrated care offers the opportunity for services to be provided more effectively and in some cases, at a lower cost, an increasing issue within the NHS as demands for financial resources increase and emphasis grows on ensuring the best use of public resources.

Neonatal care is no exception to these financial pressures. Improved survival rates of the most premature and sick neonateshas seen increased demand on neonatal and associated services, for example increasing length of stay in hospital and a need for support in the community following discharge. Demand on the system has contributed to inequalities in healthcare and unacceptable variation in healthcare provision and services across the United Kingdom.The Five Year Forward View addresses these issues and sets out a clear direction for the NHS, showing change is needed and what it should look like. Notably the paper emphasises the importance of patients/families gaining greater control of their care, breaking down barriers within the NHS as to how healthcare is provided and moving services into the community and making it possible to receive care at home. The following report will examine the concept of Family Integrated Care (FiCare), how it can positively contribute to national and local agendas and its’ place as a model of care within a new and evolving NHS.

2. Background to FiCare

FiCare is a relatively new model of care startedin 2013 by Dr Shoo Leewho was intrigued about the feasibility of introducing a care by parent model of careto his NICU in Canada. Unlike previous family centred care approaches, this new parent model of care places parents at the heart of care giving, being based on the Humane Care Model already widely operational in neonatal units in Estonia. In the humane care model the mother’s well being is integral to the infant’s well being and vice versa. In Estonia once a baby is born (including preterm infants) mothers move into the hospital to provide care to their baby until discharge.

The FiCare model is an extension of the principles of Family Centered Care. The goal of FiCare is to facilitate a partnership and collaboration between parents and the NICU staff, to promote parent-infant interactions, and to build parent confidence. FiCare is achieved by promoting information sharing between staff and parents and by parent participation in their infants care. Parents are provided with support and education to provide care for their infant and grow into their role as primary care providers for their infants.Within the FiCare model parents are taught to participate in care giving where possible for example weighing, feeding, tracking progress, administering oral medications and actively participating in decision making by being part of medical ward rounds. FiCare represents a paradigm shift in thinking about the way in which healthcare is delivered. FiCare invites parents in to become part of the primary care team, moving away from traditional care delivery by only highly trained healthcare professionals.

3. Principles of Family Integrated Care

Participation in FiCare is different from family to family (Lee 2015). Families participate to the best of their ability and are supported to do so. This process helps to ensure the transition home is as smooth as possible.Integrated parental care is fundamental to the work which has been divided into 4 pillars (Lee 2015):

1. Parental education guided by adult learning principles, skills check lists used to allow parent led learning.
2. Nursing education – move from doers to enablers. Nurses are expected to mentor and coach parents, sign off parent acquisition skills, interact more with parents at the bedside and share charting of observations with parents etc.
3. Environmental support to allow long parental participation i.e. visiting policies, physical support e.g. a lounge/kitchen facilities
4. Psychosocial support for parents and staff. This is in the form of peer support groups

4. Benefits of FiCare

4.1 Table of benefits for the neonate

Health Improvement / Data to support improvement
Increased breast feeding rates and babies receiving breast milk at discharge. / Leeds (2016) Breast feeding rates doubled to 60% at discharge.
Canadian FiCare pilot study 85% of infants went home on breast milk with the majority being breast fed.
Improved infant weight gain / Weight gain was 9% higher in the FiCare Group (p<0.05) compared to the control group (Canadian pilot study).
Levin study (Birth 1994) Humane Care model compared care of 84 infants by parents compared to 72 infants cared for by nurses and found after a 30 day period weight gain in the parent group was significantly higher.
Less reported instances of: infection, NEC, ROP & Incident reports. / Canadian FiCare pilot study:
ROP statistically significant decrease (p=<0.05) in the incidence of stage 3 or borderline ROP.
Infection: decreased rate of nosocomial infection (0 in control 9.7% normal care) however not statically significant p=0.057.
Incident reports: 0.84 v 1.15 per 1000 patient days but again not statistically significant (p=0.78).
Levin study (Birth 1994) Humane Care model – 30% reducing in infection rates.
Reduced length of stay (LOS) / Leeds (2015) LOS reduced by 9days . previous studies have shown empowering parents to care for their infants reduces LOS A study by O’Brien et al (2006) demonstrated hospital stay was reduced by 3.9 days for infant whose parents were very closely involved in their care.
Levin study (Birth 1994) Humane Care model – 20% reduction in LOS.

4.2 Table of the benefits of FiCare for the families and healthcare professionals:

Health Improvement / Data to support improvement
Maternal & Family Mental health: Lower rates of stress for mothers & families as they feel more in control, part of the team and are given every opportunity to bond with their baby. / Data from Canadian pilot study demonstrated parent stress was decreased significantly at discharge p=<0.05 (Parental stress Survey) with much positive written feedback from parents.
Parent education sessions as part of the FiCare programme gave parents the opportunity to talk candidly about themselves, postpartum depression, feelings, relationships etc.
O’Brien et al(2006)found improved metal health outcomes for parent’s involved closely with their infants care whilst in NICU.
The continuity of care provided by parents under the FiCare model can help them to identify early changes in the infant’s condition alerting the healthcare professionals to investigate and acted upon early if required. This role in turn contributes to parent’s own good health and reducing re-admission rate once discharged from hospital. / Reduced rates of infection.
Leeds project demonstrated a trend toward less general practitioner and hospital attendance than non-project babies and less episodes requiring antibiotic treatment during their neonatal stay.
Levin study (Birth 1994) Humane Care model – reported improved patient/staff satisfaction.
FiCare aids early discharge from the neonatal unit and ensures the transition home is less stressful for families as they are already used to providing care for their baby. / Leeds (2015) LOS reduced by 9days.
O’Brien et al (2006) parental involvement reduced LOS by an average of 3.6days
Staff – with increased parental involvement staff had more time to undertake tasks required of registered practitioners – medication administration/ education/training etc. / Levin study (Birth 1994) Humane Care model – reported improved patient/staff satisfaction.

4.3 Table of Data from FiCare project Implemented at St James’s Hospital Leeds.

Table demonstrates the main outcomes reported in the in the first 6 months of the pilot, involving 38 families. The project was launched in May 2015.

4.4 Benefits for the whole healthcare system: the principlesbehind the FiCare model potentially extends way beyond the NICU into other areas of healthcare, as the model demonstrates healthcare provision is a partnership between healthcare professionals and the patient and /or families. This is particularlypertinent in a time when resources within the NHS are finite, being over stretched and out dated resulting in inequalities in care. New models of care are constantly being sought to overcome pressures on the limited resources available within the NHS with many services moving outside of the hospital setting and patients being given more choice and input into the care they receive. Providing care in different but appropriate settings fits with the Neonatal Service Specification which advocates the principle of Operational Delivery Networks (ODNs) providing the ‘Right Care, in the right place’. In the case of FiCare data has shown as a result of increased parental involvement from an early stage length of stay is reduced meaning babies are going home with more ‘complex needs’ for example tube feeding, on home oxygen, requiring suction being managed by their families with the support of community/out reach services.

4.4.1 Examples of care provided by families with appropriate support outside of the hospital setting

The long-term ventilation service (LTV) working outside the Royal Brompton hospital works by providing clinical support, education and training to professionals and familiesin-order to get LTV patients home sooner which has been shown to reduce length of stay in hospital, improve the child’s health and development and be less stressful for their families. The maternity paper Better Births(2016) produced by NHS England, is another example of how different ways of providing maternity services are being examined. The paper demonstrates howwomen have made it abundantly clear they want to be in control and take responsibility for their care and well being, receiving personalised care that is right for them and their babies, improving outcomes and reducing inequalities. These are just two current examples of positive changes that are occurring in the way healthcare is being provided and delivered .

5. Families and FiCare

Successful implementation of FiCare will require a cultural change not only from amongst healthcare professionals but from families too (Lee 2015). Families will need to understanding their role and responsibilities in supporting one another and in delivering this new model of care, for example a commitment to being at the hospital for continuous lengths of time, positively contributing to care and being part of the team.

Already across the North-West parental involvement is growing in momentum there are many examples of positive cultural changes involving parents. The BLISS baby Charter has recruited 20 neonatal units across the North-West with two units having completed the second audit showing serious commitment to improving care and involving families (BLISS 2017). Many neonatal units already incorporate parent led initiatives within their neonatal units, for example the discharge board ‘Train to Home’ encourages parents to participate and contribute positively in planning towards getting their baby’s home sooner from hospital. Parent support groups have evolved to become influential in neonatal care utilising resources such as social media to engage with their target audience and spread awareness beyond the NHS. Within the North-West Neonatal Natter, Spoons and Neomates are just a few examples of professionals and parents working collaboratively to empower families within the neonatal setting.

Whilst there are many examples of excellent work involving families being undertaken it must also be recognised parental involvement is not equitable across the NWNODN. There still remain many inequalities in parent support and involvement across the North-West of England. Neonatal units have evolved to involve families at different rates and to varying degrees, resulting in stark differences in practices such as involvement on ward rounds and differences in the standard and provision of parental accommodation between hospitals across the network. Implementing the principles of FiCare requires cultural change and buy-in, not only from healthcare professionals, but commissioners, managers, families/parents and the public if it is to be truly successful.

6. The Picker Report and FiCare

The Picker Report (2014) was a national survey aimed at gaining a clearer understanding of parent’s experiences of neonatal care in England. The survey involved 88 neonatal units and responses were received from 6,000 parents (37.6% response rate).

According to the Picker Report 75% (N=4427) of parents felt prepared for going home from the neonatal unit. However a third (38% N=2245) stated they did not receive enough information on what to expect with regards their infants progress and development once they were at home. Whilst these figures can be viewed as encouraging, on the other hand they also indicate a need for improvement around discharge preparation, parental knowledge and understanding of caring for their infant. All of these areas are addressed through the FiCare model of care.

In the report 58% (N=3144) of parents stated they were not able to talk to a doctor as much as they wanted. The goal of FiCare is to facilitate a partnership and collaboration between parents and the NICU staff, to promote parent-infant interactions, and to build parent confidence. This is achieved by promoting information sharing between staff and parents and by parent participation in their infants care and activities such as ward round where they would have opportunity to talk with the doctors. Encouragingly, the Picker Report highlighted the Greater Manchester Network had one of the highest proportions of parents stating staff introduced themselves and doctors were available most of the time to answer their questions.

Worryingly the Picker report (2014) highlighted 38% (N=2208) of parents were not included in discussions about their baby’s treatment of care. 64% (2198) of parents stated they did not feel staff arranged care arounds their usual visiting times and 60% (N=3070) claimed they were unable to do as much skin-to-skin as they would have liked. FiCare brings about a cultural change making parents the primary care giver and therefore addressing these issues raised by parents.