Development of a research-based classification of approaches to paediatric palliative medicine service provision within children's and young adults' hospices: A mixed methods study.

BACKGROUND: Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world. However, service provision varies widely leading to inequities both within countries and internationally. AIM: To describe and classify existing approaches to paediatric palliative medicine in children's and young adults' hospices across the UK. DESIGN: A mixed methods study conducted by telephone interview. SETTING/PARTICIPANTS: Thirty-one leaders of children's hospice care, representing 28 services, 66% of UK children's and young adults' hospice organisations. RESULTS: A geographic-specialist classification was developed through integration of findings, enabling hospices to be classified as Regional specialist, Regional non-specialist, Local specialist and Local non-specialist. Both qualitative and quantitative data demonstrated diversity and inequity in paediatric palliative medicine provision. Of 159 doctors (63.5% of whom were general practitioners) working in participating hospices only 27.5% had specialist training in paediatric palliative medicine. The majority of participating hospices (67.9%) did not have involvement from a paediatric palliative medicine consultant. CONCLUSIONS: Internationally, the integration of specialist children's palliative care teams with existing services is a current challenge. Despite differing approaches to children's palliative care world-wide, models of care which facilitate integration of specialist children's palliative care could benefit a range of countries and contexts. The geographic-specialist classification could be used to inform recommendations for a networked approach to paediatric palliative medicine within children's and young adults' hospices to promote equity for children with life-limiting and life-threatening conditions.

Protecting children or creating vulnerability?

Children are, rightly, viewed as vulnerable and in need of safeguarding. However, protecting children from harm should not eclipse their need to learn about managing risky situations and those in which they are vulnerable. How adults view risk and vulnerability will affect the way in which they enable children to learn through activities which carry a degree of risk. Community practitioners may be well placed to discuss with parents how the risk and benefit of various activities can be considered, and children enabled to learn and develop resilience through acceptable risk taking activities. This paper discusses the challenges which community practitioners may encounter when working with parents on enabling them to achieve a balance between risk and safety for their children. It presents some key concepts and perspectives which may assist them to facilitate discussions with children and families.

Reflecting on nurses' views on using research in practice.

This paper follows a previous paper (Hewitt-Taylor et al, 2012) in which the authors summarised their reflections on the literature relating to the application of research in practice. This paper builds on these reflections and reports on the findings from one aspect of a study that explored nurses' views on using research in practice. Quantitative methods of data collection and analysis were used and data were gathered using questionnaires. The findings suggest that nurses generally value research, but this does not necessarily mean that they base individual decisions on particular research findings, or that research is considered the most important form of evidence in direct practice. In addition, the resources that enable nurses to find, appraise and make decisions about using research, are not always readily available in practice settings. From this part of the study, it can be concluded that for research utilisation to increase, time, resources, role models and environments that support this ethos are needed, and that an emphasis on research should not eclipse other key forms of nursing knowledge such as patient views and experiences, and professional expertise in the promotion of evidence-based practice.

How personal health budgets may affect community nursing teams.

In social care, there has for some time been the option for individuals to use direct payments to manage their own support, and more recently individual budgets have been piloted. While this approach has not been available for healthcare payments, there is the potential for this to change. This paper outlines the implementation of direct payments and personal budgets and then discusses some of the issues which should be considered if such arrangements are introduced in healthcare. These include: preparing existing staff for such changes in funding and the implications for them; clarifying the new roles and responsibilities of community nursing teams, training opportunities for staff who are employed directly by individuals; staff recruitment and retention, and designing evaluation mechanisms which assess quality as well as cost.

Patient empowerment: does it still occur in the ICU?

The theoretical underpinnings of patient empowerment were developed through the work of educators and community psychologists, working primarily with the socially disadvantaged. Empowerment is seen as a philosophy based upon the belief of the inherent worth and creative potential of each individual. Therefore, the aim of this paper is to explore whether this creative potential associated with patient choice that encapsulates empowerment is applicable to the Intensive Care Unit.

Caring for children with complex needs: staff education and training.

Children who live with medical conditions that were previously considered incompatible with long term survival are often highly dependent on interventions and equipment which would traditionally have required hospitalization. However, it is generally accepted that their social, psychological, emotional and developmental needs are best met at home. One of the many factors that can impede these children from being discharged from hospital is the lack of availability of staff who can provide care and support for them and their families. Increasing the number of staff who are able to provide such support might, therefore, assist in providing for their care needs. This article reports on a study of the perceived education and training needs of staff who care for children with complex needs and their families.

Issues involved in promoting patient autonomy in health care.

Respecting patient autonomy is a central part of the Royal College of Nursing's definition of nursing (RCN, 2003). Although autonomy is a fundamental ethical principle in health care, it stands alongside the principles of beneficence, non-maleficence and justice (Wilmot, 2003), and these principles may be interpreted differently by individuals and professional groups. In seeking to promote patient autonomy, it is therefore necessary for nurses to consider how these principles interlink, and to understand the potentially differing interpretations that they may encounter in practice. This article sets out to address these issues and suggests that facilitating patient autonomy includes engaging in debates which include uncertainties, considering the resource implications of patient autonomy and the responsibilities that patients have themselves. It also identifies that nurses who aim to promote patient autonomy and holistic decision making need to be able to facilitate discussion that may include questioning the dominant biomedical view of health. This will be problematic if nurses do not themselves feel empowered or autonomous.

Family-focused children's end of life care in hospital and at home.

An increasing number of children and young people require end of life care, and providing them and their families with optimum support at this time is crucial. This article describes how nurses working with children and families in home, hospital and community settings used the principles of practice development methodology to develop end of life care provision and follow-up bereavement support. It outlines the 'ways of knowing' that informed developments and how parents' priorities were kept central to the process. Finally, it discusses how the approach taken to practice development reflected the value of compassion in nursing practice.

A nurse's role in promoting social capital in children and young people.

Enabling children's wellbeing by supporting their social networks is an important role of children's nurses. This article presents the concept of social capital as a cognitive tool to help nurses reflect on why and how supporting these networks is important. Through three case studies the authors introduce the attributes of social capital and how these may be applied and inform practice in hospital and community healthcare settings.