What did they say? How children, families and nurses experience ‘care’

Abstract

The degree to which family-centred care is achieved in paediatric practice varies and is subject to multiple complex influences. As part of a strategy to improve patient care, one paediatric ward participated in a study to elicit how care was experienced by three stakeholder groups. This paper aims to discuss the experiences of care of children, parents and nurses in an acute care setting, highlighting the gap between espoused values of family-centred care and those realized in practice. Semi-structured interviews were used to capture the experiences of the three stakeholder groups in relation to care planning and delivery. Data analysis was managed by means of cognitive mapping. Integration of data from each group on a single cognitive map enabled construction of a community narrative. Three themes emerged from the data: Relationships Decision-making So, what about the nurses? An overarching theme of communication was found to be an integral part of all the themes. The research team are now working in collaboration with the ward nurses to feed back findings and develop ways of using the data to inform clinical practice. Determination of what was real for children, parents and nurses in this setting is enabling staff to improve the way in which care is delivered. Nurses are using the findings in conjunction with continuing opportunities for development to bridge the gap between espoused values of family-centred care and the actual experience of caring and being cared for.

Meeting the information needs of children in hospital

“…Parents held a similar instrumental intermediary role, whereby they retold the children what the doctor had said to them in a manner their child would comprehend. These findings lend support to previous reports that in general children find it easier to understand nurses and children frequently rely on their parents to act as communication brokers and mediators to reinforce and translate information provided to them by health professionals (Buford, 2005; Kilkelly and Donnelly, 2006; Lewis et al, 2007; Young et al, 2003). This may explain why children do not possess particularly strong objections to health professionals communicating with and informing their parents about their condition/progress.…”

How children’s rights are constructed in family-centred care

“…Family-centred care may be considered an appropriate mechanism to promote children’s rights; see, for example, the definition of FCC as: ‘a process in which the family and child are professionally supported in their involvement, participation and partnership in care based on an assumption of balanced power and the opportunity to negotiate’ (Smith et al, 2002: 81). A number of authors considered that FCC can address children’s rights since it deals with their needs (Newton, 2000; Corlett and Twycross, 2006; Shields et al, 2006; Lewis et al, 2007). There is evidence that hospitalized children nursed in a family-centred environment, for example, exhibit decreased crying and restlessness, and less medication has been documented (AAP, 2003).…”

“…This paper arose during a research project about how nurses negotiated the involvement of children and their families in the delivery of care and decision-making about treatment (Lewis et al, 2007; Hooke et al, 2008), and as we attempted to make sense of the family-centred care literature from the perspective of the children, and children’s rights. We gained the impression from the children in our study, that they were passive, in other words, the children allowed procedures to be done to them and that they were dependent, mainly on their parents.…”

“…We gained the impression from the children in our study, that they were passive, in other words, the children allowed procedures to be done to them and that they were dependent, mainly on their parents. The children that we talked to relied on their parents to talk to staff, to obtain information and to be with them in hospital (Lewis et al, 2007). The vulnerability of the children has led us to examine how the wealth of family-centred care literature published in the last two decades addresses the human rights of children in an acute care hospital setting.…”

A longitudinal study of aspects of a hospital's family‐centred nursing: changing practice through data translation

“…While recognizing this limitation to the PCNI, data is collected in the organization about the experiences of patients and their families (see e.g. Lewis et al 2007, Hooke et al 2008, Redshaw et al 2011 and this adds to…”