What is family-centered care?

Family-centred care is a ubiquitous term in paediatric health facilities. It means that an admitted child can never be treated as a single individual patient and that the family is the unit of care, as the parents and family are central to the child’s wellbeing, especially during traumatic experiences. There is no rigorous evidence that family-centred care works, but qualitative research is drawing out some grave concerns with how it is implemented. Part of the problem is that there are many descriptions of family-centred care, but few definitions and some of its component parts may be in place in some health services without the whole model being in place. This causes confusion amongst health professionals and parents and children and makes it impossible to test in a randomised controlled trial. Visit any children’s health facility anywhere - rich countries, poor ones; tertiary paediatric facilities, community child health services, institutions for children with disabilities - and one will find that they say they practise family-centred care. It may be in mission statements, clinical practice guidelines, leaflets for parents, signs on walls, policy documents - in other words, everywhere. “Family-centred care” sounds good; it sounds like something to which every health institution which cares for children should definitely use and sounds like a wonderful and ideal way to care for children who need healthcare. After all, every child has a family and every family is affected when a child is ill. There is a wealth of literature about family-centred care, far too much to include here, or even in a single systematic review. Much research has been conducted on it, while many have tried to test it and its application in healthcare. It has been approached from many angles - the children’s, the parents’, the nurses’, the doctors’, the allied health professionals’ and from health service managers’ perceptions. Sociologists have had a go, as have historians, philosophers, anthropologists, just about everyone. But what is it? And what does it mean for those on the receiving end, the families? Does it matter? Does it make a difference? Can we test it? Is there an alternative? In this paper I attempt to answer these questions and consider another model - that of child-centered care