Purpose and Background In the UK, family-centred care (FCC) is espoused as being firmly embedded within the approach to care delivery when working with children and families (Smith and Coleman, 2010). Whilst the Royal College of Nursing (2009) advocates family involvement in pain care, research suggests parents and children are not actively involved in care decisions. The study explored the extent to which parents/main carers are involved and partners in their child’s pain care and the factors that influence parental involvement. The “Family-Centred Care continuum” was the conceptual framework used to examine parental involvement.
Methods A qualitative ethnographical approach was adopted. Data were collected using non-participant observation and follow up interviews with a purposive sample of nurses, parents and children on the children’s wards of a district general hospital. Framework approach underpinned data analysis.
Results Partnership between nurses and parents was not overtly evident in relation to pain care. Involvement appeared to be “unspoken”, with neither party (nurse or parent) being clear about the extent to which parents can be, or are involved in care. Few examples of explicit negotiation related to pain care were observed. However, parents attempted to be involved and act as advocates for their child, particularly when pain care was perceived as sub-optimal. Parents used a number of strategies to be advocates for their child whether supported by nurses or not, including; being determined to be involved by persistence; speaking up for their child; having or gaining knowledge about their child’s care and knowing their child. Nurse’s actions either promoted involvement and parent advocacy or hindered it. Providing information, planning care with parents, valuing parent contributions and supporting parent choices were facilitating factors. Hindering factors were identified as; making decisions without involving parents; lack of communication and variations in understanding of the principles and subsequent implementation of FCC.
Conclusions and implications Nurses require knowledge and confidence to implement collaboration with parents, by empowering parents and overtly negotiating roles. Further research is necessary to identify how nurses can support parents to be partners in care.
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