Editorial: Getting it right for children and young people’s health care services

Two key themes run through this special edition of JCN: the need to involve users in the design and evaluation of health services and the need to understand and continually evolve the nursing role to meet the needs of those in our care. Both themes are underpinned by one major underlying feature that is the need to understand what it is like for the children, young people and families in our care, for us as nurses, to deliver a health service that meets real rather than perceived needs. If we want to understand more about what it is like for families and if we want to involve them in decisions affecting their care as well as in service developments in general (Department of Health 2004), then we are charged with getting a few things right. First we need to allocate time and space to research, and explore ways referred to by Darbyshire in this issue to engage in clinical research in a meaningful and practical way. We know that nurses are central to the achievement of higher standards of care and to the delivery of best outcomes and high quality patient, and family experience. We also know how important undertaking research is as well as ensuring that findings are disseminated and inform clinical practice. But we also know, through a series of key policy reports that, despite some progress in recent years, current arrangements have failed to maximise the nursing contribution to research and development (Department of Health 2000) and have limited the opportunity for nurses to contribute to and enhance the science of child health care. Improvements in health care depend upon a sound evidence base from which to practice. This evidence base can only be secured through completion of high-quality research, which, within the context of children and young people, must encompass a shift from being ‘about’ children to ‘involving’ children (Hill 1997). This brings us to our second point. We need to find research methods most suited to our population. The key objective here is to use methods that enable children and young people to be active participants in the research process, methods that will maximise the opportunity to put their views forward (Kirk 2007). Within this special edition a number of different and creative methods are presented (see Lambert for example), alongside some of the more traditional methods such as ethnography (see Lindsay Waters). It is this rich tool box of both new and traditional research methods that we need to draw upon (see also Journal of Research in Nursing 2007), and begin to create a dialogue of the application and implications of some of the methods that we use as evidence of how they are being rigorously applied in our field. Of course, gaining the views of children and young people present their own challenges, where tensions between rights and protection can act as barriers to their involvement (Moules 2002). However, the benefits far outweigh the challenges, not least being the value that children and young people place upon being listened to. There is now a solid policy infrastructure for supporting consulting with children and young people and encouraging decisions informed by this consultation (Roberts 2004). We must now use the policy to influence and sustain participation at all levels in children’s health care. Our third point relates to the need to have parents' experiences to inform the care we deliver. While advocating that professionals should consult children and young people this does not mean that parents’ views should be ignored. Parents need to have the opportunity to express their own needs (Young et al. 2002), as well as their expectations, based on their own experiences of health care and their knowledge of their child. Additionally, where age and competence precludes children participating, involving parents is seen as both important and relevant in understanding the experience of the whole family (Greig & Taylor 1999). As consumers, involved in an encounter with health care, parents also want more choice and demand higher quality services, and as citizens they will want to play their part in helping health care services to be safe, accessible, responsive, and economically sustainable (Sang 2004). As users of our services parent’s accounts of their experiences are also important to us, as evidence here, for example see Maxton 2008, Eaton 2008 and Lowe et al. 2008. Finally, although we do not want to dwell on the many barriers to undertaking clinical research or publishing research findings, as many are well rehearsed in previously published work, we do, however, want to make one final and important point about one particular challenge. This is the challenge that many researchers in child health face of securing ethical approval for their research to go ahead (Stalker et al. 2004). It is not uncommon to hear of difficulties encountered, where clearly tensions between rights and protection of children can result in children being unwillingly silenced in research. To move forward in this area research ethics committees need to ensure that they have members with the necessary knowledge and expertise in relation to, for example, qualitative research methodologies and methods that enable children and young people to participate fully in the research process. Producing special editions such as this is one way of ensuring access to this knowledge is widely available. However, until the importance of ensuring the views of children, young people, parents as well as health care professionals is acknowledged we will not be able to say that we have got it right.