Abstract
In paediatrics right around the world, there is a ubiquitous model of care called ‘family-centred care’ (FCC). Many of NJNR’s readers will be familiar with it – it is policy, declared, endorsed, promoted, encouraged, sponsored, professed, strategised, dogmatised, proselytised, and so forth in just about every health service that cares for children across the world. 1 A major problem with FCC exists, however. We have no solid evidence to prove its effectiveness. 2 In spite of that, hospitals, health services, government departments, you name it, continue to say they implement it both in policy and practice. I have written about FCC and its problems before in this journal, 3 and I have spent much of my academic life suggesting that it is unethical to continue to push a model for which no good evidence of effectiveness exists. However, creative as I may be, I have never been able to come up with an alternative. But someone else has.
Bernie Carter from the United Kingdom (UK) and Karen Ford from Australia have devised a new model called ‘child-centred care’ (CCC). 4 They assert that in FCC and its flawed application, we (health professionals who care for children and families) have lost sight of the child, who is, after all, the most important person in the deal when he or she is brought to a health service for care. They say ‘CCC means that children and their interests need to be at the centre of our thinking and our practice’,4(p.25) and suggest that FCC sets parents at the centre of the child’s admission.
There is, though, a danger for CCC. When it first emerged, FCC was seen as such a good idea that everyone – health professionals, hospitals, governments, etcetera – all put it into place before it was tested. Consequently, as time went on, it became impossible to set up randomised controlled trials or even quasi-experimental studies to investigate its effectiveness, with the resulting mess that we find ourselves in today in paediatrics. We must make sure this does not happen with CCC.
Here is where our international work comes in. There are many researchers in paediatrics and child health, but relatively few who study the way children are cared for when they come to a health service. As a result, most of us are known to each other. After Carter and colleagues first published about CCC in 2014, Imelda Coyne, Inger Hallström and Maja Söderbäck 5 quickly came up with a response supporting the need for this new model and developing some critical argument around it. I watched interest in CCC grow, and soon realised two things: first, people from many different countries were worried about FCC and its imperfect implementation, and lack of evidence. 6 Second, I became concerned that CCC would suffer a similar fate – the ‘powers-that-be’ would latch onto it as a panacea for their problems in providing safe care and, like FCC, it would be implemented before it was fully defined or tested (we still do not really understand what makes FCC tick). 7 Many agreed with me, so I set about gathering like-minded clinicians and scholars in the paediatrics/child health world. A new international group was formed.
To date, we have members from Australia, Finland, Iceland, Indonesia, Ireland, Jordan, Malawi, New Zealand, Papua New Guinea, Sweden, Thailand, Turkey, the UK, the United States of America (USA), and Zambia. While I was able to link people and set up the group, in the interests of making sure it would continue into the future, I handed over leadership to others who are much less likely to retire in the next ten years than I: Associate Professor Sarah Neill from the University of Northampton (UK), Dr Mandie Foster from Edith Cowan University (Australia), and Associate Professor Jo Smith, University of Leeds (UK). The first ‘all in’ teleconference was held on 14 February 2018. From that starting point, we have a plan: first, name the group; then develop aims and objectives, all the while having conversations about where to go, what everyone expects from involvement in the group, and what everyone can contribute. However these discussions go, our main aim is to ensure that CCC, unlike FCC, is fully defined and tested before it is implemented.
Why is such an international perspective needed? The group’s conversations to date have revealed some factors that seem to be relevant to particular countries and are often linked to countries’ political systems. Countries such as the Nordic countries, Australia, New Zealand, and the UK have socialised health systems, where healthcare is freely and equitably available to all, at minimal or no cost to those seeking it. Developing countries’ health services are largely staffed with health professionals who do their very best to provide safe and effective healthcare in often hugely financially strained circumstances. In other countries, people may have to pay for healthcare and those who cannot pay will miss out and perhaps die for lack of care. Our group contains members from all such systems, and each holds somewhat different perspectives about FCC.
Already the group has encountered differences that are having, and will continue to have, an impact on both FCC and CCC. In nations with socialised health systems, FCC is seen as a way to ensure that psychosocial care is optimum for children and their families, and so accommodation in facilities is provided for parents and carers, children and parents are included in decision making (although this ideal is often missed for a variety of reasons about which a large literature exists) and effort is made to include the family in many aspects of the child’s admission. However, in Sweden, an interesting by-product of FCC in a socially well-off country occurs. If a child is admitted to hospital, each parent is given 80% of their salary for about three months to stay at home and care for the child. Consequently, only minimal facilities may be provided for parents in some Swedish hospitals.
A recent article from Malawi about FCC 8 explained that because the nurse–patient ratio was 1:84, the family had no option but to stay with the child to provide nursing care. I have written about the erroneous perception held by Western visitors that in developing countries FCC is widely practiced because the parents are always there, and I argue that this is not FCC because the essence of FCC is choice and there is no choice for these parents and children. 1 If the family did not stay, then the nurses working under such egregious conditions would not be able to provide necessary care for the child.
In the USA, despite its great (though highly inequitable) wealth, healthcare must be paid for and this is worked out by a complicated method based on the numbers of treatments and services. If, under FCC, the ‘patient’ on whom calculations are based is actually several people – the family – then the funding mechanisms do not take the extra people into consideration, and staffing levels, payments and hospital funding are all worked out with a skewed formula.
It is no wonder there have been so many problems trying to define FCC. Of course, when it comes to defining and testing CCC, the same problems will have an effect. This is why our international collaboration is so important.
Before the Internet, we could not work in this way. Models such as FCC developed long before the Internet was even thought of, and communication depended on publications, letters, telephone calls, meetings, and conferences. Now communication is instant, with many people joining in. Our recent first teleconference had people from the UK, USA, Sweden, Australia, New Zealand and Jordan online. The main problem is working out times across time zones – some will be having breakfast while others will be sitting up very late at night.
But what opportunities this provides for getting this right! We can discuss many aspects of our topics and gather a very wide bank of information and opinions about them. We can discuss why FCC and CCC may work well in one country, but not in another. We can present a united front when we need to lobby health services, managers, and governments. An international reach provides us with diverse ways to look at problems and topics, and can bring out ideas from which solutions can be found. If something works in one country, it may well work in another; and if it does not work then another country can learn from the original work.
Nursing is a great profession in which such communication can be done. While we vary across countries and systems, there exist, at the root of it all, similar philosophies and ways of thinking. If we can harness this consistency across the profession about the way children and families are nursed, then we may have a chance of ensuring CCC is defined, tested, and implemented effectively.