Family-Centred Care: time for a new model? Linda Shields MD, PhD, FACN, Centaur Fellow, MAICD, CCYPN Professor of Rural Health, Charles Sturt University, Bathurst, NSW and Honorary Professor, School of Medicine, The University of Queensland Brisbane Australia Necker-Enfants Malades Hospital, Paris, 1801 • Free Hospital for Sick Children (Royal Children’s Hospital), Melbourne, 1870 • Hospital for Sick Children (Royal Hospital for Sick Children, Great Children’s Hospital), Brisbane, 1878 Ormond Street, London, 1832 • The Sydney Hospital for Sick Children (Royal Alexandra Hospital for Children), 1880 4 “Although the tonsillectomy itself aroused anxiety in all the children, the great majority mastered and integrated the experiences without any serious emotional consequences” (Blom, 1954) 5 Sir James Spence, 1892-1954 René A. Spitz, 1887-1974 John Bowlby 1907-1990 Joyce Robertson 1919-2013 James Robertson 1911-1988 Platt Report 1959 • Children .. Should not be admitted to hospital unless … treatment … cannot be given in other ways … • Children should not be nursed in adult wards • Child should be handled by as few people as possible • Both parents and child should be adequately prepared for admission to hospital • … wherever possible provision should be made for both mother and child to be admitted together. • Unrestricted visiting strongly advised • School and play provisions be made • Sister in charge should be RSCN. Models of care: • Care-by-parent USA 1960s • Partnership-in-care - Anne Casey UK 1988 • Family-centred care - many places ≈ 1970s AAAAAHHHHH!!!!! FAMILY-CENTRED CARE “a way of caring for children and their families within health services which ensures that care is planned around the whole family, not just the individual child/person, and in which all the family members are recognised as care recipients” (Shields et al. 2006, p. 1318). Cochrane review 2007, update 2012: Family-centred care of hospitalized children 0- 12 years (Shields, Zhou, Taylor, Pratt, Pascoe, Hunter) RCTs • All children <13 (excluding premature neonates) • Models + single interventions • “family-centredness” score >50% JBI review of quasi-experimental studies 2012 (Shields, Zhou, Munns, Taylor, Watts) Only 1 study could be included No evidence family-centred care works or is effective JBI review of qualitative research 2014 (Watts, Zhou, Shields, Taylor, Munns, Ngune) 14 studies – difficulties with implementation of FCC Darbyshire, 1994 – wonderful ideal, almost impossible to implement effectively How should we understand family-centred care? Uniacke, Kayali-Browne & Shields, 2018 “To recognize and embrace the whole family when planning the child’s care is different from recognizing and embracing the whole family as a care recipient.” “The crucial difference is between, on the one hand, placing a child’s family at the centre of that child’s care, and on the other hand, regarding the child and his or her family as care recipients.”, p6). “… the family unit interpretation … a child’s illness can and often does negatively affect the interests of other family members or the whole family” (p7) Once care of the whole family becomes the goal of FCC, then FCC can persist in cases in which [it] … does not best promote the hospitalized child’s welfare (p8) 2 problems: 1. what is good for the family may not be good for the child, (and vice versa), 2. the child’s voice is not necessarily considered. All countries/cultures? Al-Motlaq MA, Shields L. Family- centered care as a Western-centric model in developing countries: luxury versus necessity. Holistic Nursing Practice, 2017;31(5):343-7. CHILD-CENTRED CARE Bernie Carter and Karen Ford (2014) “Child-centred care means that children and their interests need to be at the centre of our thinking and our practice” Carter et al. 2014, p25 • Family-centred care sets parents at the centre of the child’s admission • CCC – children actors in their own right – FCC emphasis on parents • CCC – children’s views may not always be the same as their parents/family • FCC – child’s voice subsumed within family’s – assumption that there’s a shared interest • Neither can exclude the other – child needs parents, but social, cultural, family contexts mean that care must be individualised • Children’s voices necessary in organisation and delivery of care Imelda Coyne, Inger Hallström, Maja Söderbäck, 2016 • If we focus on parents (family) and professional dominance - asymmetric relationship towards the child - takes away the focus from the child; • We need to renew efforts to promote principles of protection, promotion and participation rights for children and young people - UN Convention on the Rights of the Child • We need to strengthen the child’s perspective - child as an agent with own experiences and wishes to be respected and negotiated. “sacred cows make the best hamburgers” by A. Nonymous 15 New collaboration to define and test CCC Australia, Iceland, Ireland, Indonesia, Jordan, Malawi, New Zealand, PNG, South Africa, Sweden, Turkey, USA .