Today, globally, there is a passive acceptance of family centred care as the central tenet and fundamental principle of providing quality care to hospitalised children. A core aspect of family centred care is the idea that parents/families be extensively involved in caring for their hospitalised child, thereby recognising that the family is constant in the child’s life while health professionals are intermittent (Shelton et al. 1987). In her commentary on Shields et al. (2006) Family centred care: a review of qualitative studies. Journal of Clinical Nursing 15, 1317–23, Carter (2008, p. 2092) asserted:
Many of the advocates of family centred nursing will be adding my name to the list of nursing heretics and waiting to line me up against a wall and shoot me. This is possibly a fitting reward for someone questioning the central tenet that underpins children’s nursing.
As an advocate for family centred nursing care for ill children, I was pleased to read Carter’s (2008) commentary, most notably her recommendation:
What I am calling for us to do is actually to stop and take notice of the elephant [family centred care]; problematise it and start to understand it. Only then do I think it will be worth doing what Shields et al. (2006) and many others have called for, which is more research.... to ensure that it is being implemented correctly.
I wholeheartedly agree with this statement and with Carter’s caveat that we – practitioners/academics/educationalists – have failed to engage adequately in critical debates surrounding the philosophy of family centred care. Perhaps what has happened is, as Darbyshire (1995, p. 31) contended over 10 years ago:
The concept of family centred care is such a cherished tenet of paediatric nursing to be almost above critique. Yet a close examination of the place and meaning-in-practice of family-centred care is long overdue if the term is not to lapse into mere cliché or slogan.
To this, I would like to add my admonition to the extensive body of evidence that exists on the notion of family centred care. This is that the literature has largely focused on parents and health professionals’ perspectives of the concepts of parent participation and family centred care. What is missing here is the voice of the child. This is in stark contrast to the plethora of international studies which have explored parental roles, relationships, involvement, participation, needs, experiences, interactions and relationships, from the perspectives of both parents themselves and health professionals (mainly nurses). We appear to have moved from focusing on the psychosocial needs of children to the needs of their parents. While children’s needs remain the driving force for health professionals and families to establish and maintain relationships, Dickinson et al. (2006) highlighted that the child is more of a ‘presence’ rather than ‘present’ in health professional-family relationships.
Coyne and Cowley (2007) acknowledged this deficit of investigating children’s views and contended that an explanation for overlooking children’s autonomy and self-determination was the use of term partnership, which implies a dual relationship. This might be one interpretation. However, a definition of partnership is ‘an association of two or more people as partners’ (Soanes et al. 2001, p. 644). Another explanation could be the challenge of ensuring the voice of the child is heard when parents interrupt their child’s story, interpret meanings and/or correct their child’s story (Dickinson et al. 2006).
Coyne and Cowley (2007) did attempt to examine child-patient views, in addition to investigating parents and health professionals’ views on parent participation. Unfortunately, the dominant voice of the adults prevailed in their paper with children’s views presented integrated into parent and nurses perspectives. Exploring the needs of parents of hospitalised children, Shields et al. (2003, 2008) highlighted their negligence in exploring children’s views but suggested future research in this area. How can we effectively shape services for sick children, claim to be responsive to their user needs, and implement a family centred approach to care, without eliciting the views of child patients themselves? Pyorala (2004) advocated for children’s visibility in health care. This is essential because, have we forgotten, that the ethos of family centred care encompasses far more then merely encouraging active parent participation (Smith 1995). Shields et al. (2006, p. 1318) and Shelton et al. (1987, p. 6) portray this in their definitions of family centred care, respectively:
Family centred care is 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.
While it is important to discuss the individual components of family-centered care, it is equally important to consider all the elements as a whole. Family centered care is not just one component. Each element reinforces and facilitates the implementation of others. Together the elements convey a new philosophy of care moving from an institution/agency oriented approach to a child-centered approach and more recently to a family-centered approach.
Family centred care is an holistic family perspective, which includes children themselves and their parents as active partners engaging with health professionals in care, treatment and decision-making. It embraces such principles as, respect for child and family, recognition of family diversity, strengths, choices, individuality, and involves collaboration, negotiation, communication with, and empowerment of, child and family (Shelton et al. 1987). However, the muted voice of children reflects adult (nurse, parent) dominant power and permits an ongoing inequitable relationship (Bricher 2000). I do not wish to devalue the role, position and voice of parents themselves in the care of their sick hospitalised child. Instead, my desire/aspiration is to ensure that children remain visible at the heart of paediatric nursing practice.