INTRODUCTION

The well-being and healthcare of children and young people has a growing and continually shifting agenda in the UK. The experience of health and illness among this group has in part driven the key issues currently at the forefront of policy, strategy and recent inquiry. The increasing problems in relation to areas such as childhood obesity, substance misuse and the continuing high rates of teenage pregnancy require intervention from practitioners with expert knowledge and skills. Equally, the development of new and more effective technologies has meant that children and young people face different choices and outcomes, particularly in the context of long-term chronic illness.

Societal change is also influential in determining the lived experience of this group. Changes in the way that families may be configured and the shifting roles within those families can have an impact on a number of areas of life, including individual development, health and illness. Examples of this may include the growing number of single parent families (Self & Zealey 2007) and the change in working patterns, particularly among women (Lindsay 2003).

This is accompanied by changes in secondary socialisation, which also contribute to the overall experience of children and young people. Education, religion and in particular the role of the media has the potential to transform some of the activities in which they might become engaged. Social networking sites for example have become very popular and commonly form part of children and young people’s everyday activity. This type of networking is clearly very different from that experienced as little as 6 years ago.

It is little surprise then, that those who work with children and young people in the healthcare setting require an increasingly wide range of skills and knowledge to achieve the optimum level of service delivery. Added to this, delivery needs to be collaborative, in an attempt to provide seamless care and at no time has this approach been more central since the recommendations following the tragic death of Victoria Climbié (DoH 2003a).

POLICY CONTEXT

The policy context continues to influence and shape the children and young peoples’ agenda. The four countries of the UK, while having separate policies in some cases, the general emphasis is similar. The relevant policies are identified within this text and the further reading.

Following the publication of the NHS plan (DoH 2000), a number of task forces were established and among those was a children’s task force whose remit is to secure the health and well-being of children throughout childhood until they reach adulthood. This was preceded by the Waterhouse Report (Waterhouse 2000) about allegations into child sexual abuse in North Wales. One of the recommendations from this report advocated the appointment of a children’s commissioner. Wales was the first of the four countries to make such an appointment and the other three countries, most recently in England, who appointed Professor Sir Al Aynsley Green as its commissioner, have since adopted this concept. It is important for children’s nurses to be aware that these commissioners have the power to speak and act independently from government and thus are in a powerful position to act in the interests of those who they serve.

There has been a plethora of policy, which has sometimes emerged as a result of major inquiries into the care and services received by children and young people. During the last decade there are a small number of these inquiries that have had a significant impact upon services. Learning from Bristol (Kennedy 2001) provided a backdrop to explore the expertise of those who were directly involved in carrying out complex surgery. One of the main recommendations from the inquiry was that, as a matter of priority and within a 12-month period, there should be publication of a National Service Framework for Children and Young People, and this was duly produced in England in 2003 (DoH 2004a), followed swiftly by Wales in 2004 (WAG 2004).

The Victoria Climbié Inquiry (DoH 2003a) examined the circumstance in which Victoria Climbié died in February 2002 and made recommendations for all of the key agencies involved in safeguarding children and young people. The consequent Every Child Matters publication (DoH 2004b) has been used to inform the NHS service reviews being undertaken across the UK.

Every Child Matters (DoH 2004b) is about radical change for the delivery of children’s services to improve the outcomes for the child. It is about making children’s services more child-centred, and integrating them around the needs of children and young people by listening to children and their families. The emphasis is about early intervention and not crisis-driven action. ‘Follow the child’ is the key theme. In order to follow this approach, the boundaries and traditions that have emerged in nursing will need to be broken down and care and safety located as close to the child as possible. This work will change the way children’s services are delivered, with emphasis that this will be managed by frontline staff who understand the changing face of children’s services.

There are five themed outcomes that set the scene for delivering improved services for children:

This document is clearly one that can be applied to all those who are working in the field of children and young people in whatever specialism.

A recommendation from Every Child Matters suggested that the Chief Nursing Officer (CNO) of England examine the role of nursing and midwifery in the health and well-being of vulnerable children and young people. The CNO’s review made a number of recommendations which included increasing the number of school nurses, strengthening the public health role of nurses, the integration and co-location of practitioners, strengthening the role of nurses who work in general practice and improving leadership on child protection (DoH 2004c). These will have an impact on the role of any nurse who works with children and young people.

It is important that practitioners recognise that there are differences between the four countries. Each country has a different population in terms of healthcare need and this is reflected in policy documents developed for this age group. Recent media health commentary in Wales expressed the changing nature of healthcare services and highlighted how services are emerging which are more tailored to specific populations.

Other policy in the context of the nursing workforce, most notably Agenda for Change (DoH 2004d) and Modernising Nursing Careers (DoH 2006a) have already begun to impact upon children’s nurses. The former is the most radical change in the NHS pay system since the inception of the NHS in 1948. Although anecdotal, it does appear that this new pay structure has meant there is variation in salaries awarded to similar roles around the UK. This could potentially lead to workforce retention issues, which would in turn have a direct impact upon the care of children and young people.

Modernising Nursing Careers, launched in 2006, followed an initiative undertaken by the four Chief Nursing Officers in the UK. It explains:

Nurses continue to respond to these changes by enhancing and broadening their roles and looking at how roles and care can be integrated, thus providing potential improvement in the overall quality of care which children and their families receive. This can involve moving away from the traditional nursing image and undertaking tasks which previously were performed only by doctors and other professionals.

Children’s nurses must continue to develop and be recognised as professional practitioners, with an ever-extending repertoire of skills. The new practitioner is one who is educated to practice from a sound, research-based knowledge. Current practitioners in children’s nursing sometimes feel that they do not have the opportunity to provide much ‘hands-on care’. This feeling has to be considered in the context of changes in care. One such change is the philosophy of family-centred care and partnership being central to the service provided in children’s nursing (Kenny 2003). Family-centred care is a concept that has been familiar to children’s nurses for a number of years. More recently, the National Service Framework’s standard for hospital services states that child-centred services are those that ‘treat children, young people and parents as partners in care’ (DoH 2004a, p 9). Therefore, while parents and other family members are doing what were previously considered ‘nursing duties’, nurses have to develop a very special set of skills that enable them to care for vulnerable children and families. These skills include the responsibility for teaching families, providing support and helping families to make decisions in the best interests of their infant or child, whether sick or healthy, and may present nurses with situations in which they have to make some difficult decisions. Nurses must feel confident about the delivery of their practical skills and that they can think in a clear and rational manner about the emotional and social care they provide. Kitson (2004) emphasises the need for nurses of the future to be able to deliver integrated care across a range of settings, undertaking a range of activities on their own initiative, such as independent prescribing, referral, admission and discharge within a variety of care settings.

THE PREPARATION OF CHILDREN’S NURSES

Throughout the development of the nursing profession, children’s nurses have been educated in a number of ways and in a number of environments. During the 1980s, generic preparation, followed by specialist post-registration qualification was the favoured route. This of course changed with the emergence of ‘Project 2000’ and the move to higher education. This type of preparation enabled students to decide on their choice of specialism at the outset of their programme. This has continued to be the trend in education preparation with students exiting at diploma or degree level, although in Wales all graduate entry was implemented in 2004. There has also, in recent years, been a return to skills-centred programmes, with an increasing emphasis on the importance of core skills. The Nursing and Midwifery Council have also published a set of essential skills clusters, which are to be mapped against existing curricular. They have agreed that simulation can be used to represent placement hours, which recognises the usefulness of simulated learning as an added tool, which can assist in skills development (NMC 2007).

Recently however, the Nursing and Midwifery Council (NMC) have consulted throughout the UK with registered nurses with a view to deciding whether the current preparation is the most effective in meeting the needs of the public. It would appear following a press release by the NMC that the current format of pre-registration in relation to branch configuration will remain.

LEGAL AND PROFESSIONAL FRAMEWORKS

The role of children’s nurses continues to change and develop. Care delivery encompasses a broad spectrum of activity, which ranges from the intensive care setting, to the provision of home support to children with long-term and complex healthcare needs. A family-centred approach is still acknowledged as the most effective way of meeting the needs of children and young people, and the increasing involvement of this group in their own management as well as the organisation of services is now an emerging phenomena.

In all areas of practice, the qualified nurse is accountable for personal decisions and actions. This fact is emphasised in The Code (NMC 2008). To be able to deliver care within acute and community settings is of equal importance for children’s nurses, as their roles are increasingly becoming community focused. In both of these situations the responsibility to practise intelligently is with the individual nurse.

ACCOUNTABILITY

Accountability may be defined as ‘the obligation of being answerable for one’s own judgements and actions’ (Martin 2004, p 3). This definition provides evidence of an abstract concept which nurses should explore further. Accountability is a term frequently used by and about nurses and so each nurse should be able to define this in the context of personal practice. Student nurses often ask questions such as: ‘If we give a wrong drug, who is accountable?’ or ‘Supposing a child injures himself while he is playing with me in the playroom, am I accountable?’ Students may challenge registered nurses by posing such questions; however, it is important for them to explore the issues while they are still students. Although it is impossible to explore every conceivable situation, students should be provided with guiding principles which will help in their decision-making. The Nursing and Midwifery Council’s Guide for Students (NMC 2005) stresses that, although not professionally accountable, students must act at all times in the interests of the patients with whom they come into contact during their practice experience. Therefore, when playing with a child in the playroom, the student nurse should make every effort to ensure that the child is supervised within a safe environment appropriate to the child’s age and stage of development.

Registered nurses also have unanswered questions about accountability and their extending scope of professional practice. Registered practitioners are, on the whole, clearly aware of the implications of the ever-expanding boundaries of practice and thus realise that there is no room for complacency. The Department of Health, in the response to the Report of the Public Inquiry into children’s heart surgery at the Bristol Royal Infirmary 1984–1995, called for the need to improve lines of accountability at local and national levels (DoH 2002). The later inquiry into the death of Victoria Climbié re-emphasised the need for accountability across all health and social care agencies (DoH 2003a). Therefore, it would seem that accountability has now been recognised as central to practice in the health and social care professions.

The newly revised Code from the Nursing and Midwifery Council (2008) refers to accountability on a number of occasions. The Code states quite clearly what a registered nurse is personally accountable for and provides guidelines for the profession, although as with all guidelines, these may be open to interpretation by individuals. Nurses should avoid individual interpretations of their professional accountability, since in so doing they may jeopardise their careers, together with the reputations of their employing institutions and the profession. Added to this is a comprehensive systematic review. Pearson et al (2006) identified the importance of accountability within teamwork in nursing. Nursing has changed and will continue to change for it to be a dynamic profession. The last decade has witnessed a greater diversity of career pathways for children’s nurses (Cox et al 2003) and these new pathways have meant that accountability has been firmly placed as having a central role in practice.

Some nurses and health visitors have undertaken further academic programmes in order to support the development of their roles. One such programme, which has gained professional and media interest, is nurse prescribing. Nurses who have undertaken this educational programme are now prescribing medications from the Nurses Prescribing Formulary. In some specialist roles (e.g. the advanced neonatal nurse practitioner), nurses have developed knowledge and skills to enable them to assess, plan and deliver care that previously was considered the role of a doctor. These nurses are prepared to undertake such procedures as resuscitation and intubations in critical situations where the wrong decision or action may jeopardise the life of the infant/child. The majority of nurses undertaking these specialist skills are now educated to degree level; Masters level qualifications are increasing and there are also practitioners working at doctorate level. Nurses practising at these advanced levels are making judgements and taking actions which may involve life and death situations. Recent research (Ward Platt & Brown 2004) identifies that good-quality neonatal care can be provided by neonatal nurse practitioners without the support of junior paediatricians. The emerging role of the ‘nurse consultant’ enables more nurses to develop in-depth expertise in a particular area and to gain recognition of their specialist knowledge. These roles are in keeping with the recommendations made by the Department of Health in Making a Difference (DoH 1999), where it is stated that, by developing nurses’ roles, services for patients will be improved and nurses’ careers enhanced.

Increasingly, there is a need to be able to recognise and deal with the mental health problems of children and young people. This is a highly specialist area where there has been an historic lack of resources. A lack of in-patient beds in this area often means that children with mental health problems are being admitted to general children’s wards, where staff do not always have the required skills in the area of adolescent mental health. These children and young people can also present in a number of other areas, including emergency departments and GP’s surgeries. In these environments, they may be cared for by nurses who do not always have the specialist knowledge and skills to deal with their particular problems. Often the knowledge of the children’s nurse needs to be developed to effectively help this group of children and young people (Davies & Huws-Thomas 2007). The National Service Framework (NSF) (DoH 2004a) stressed that child and adolescent mental health is an integral part of all children’s services. It goes on to state that where a hospital is providing a service for children, then the staff should have an understanding of how to assess and address the emotional well-being of children. The CNO’s review of nursing, midwifery and health visiting states that children in acute settings would greatly benefit from nurses who have more skills in mental health and improved access to child and adolescent mental health services (CAMHS). Staff should also be able to identify any significant mental health problems. The need for a strong liaison with CAMHS, including psychiatry, psychology and family therapy, is also stressed. Section 4.27 of the NSF (DoH 2004a) calls for all hospitals treating children and young people to have policies and liaison arrangements in place to deal with child and adolescent mental health problems, ranging from overdoses and deliberate self-harm to child safeguarding and long-term life-threatening diseases. In addition, nurses working with school-age children should have appropriate competencies for working with this age group. There are, however, still real gaps in services which have been recently highlighted (Woodgate & Garralda 2006).

The increasing move towards caring for sick children in their own homes (Hughes & Callery 2004) puts more pressure on the nurse in the community. These nurses are often isolated from colleagues for long periods during their working day, making it difficult to discuss issues when uncertainty arises. They should not feel obligated to undertake practices for which they do not have appropriate skills. However, they are responsible for their own knowledge base and effective decision-making, since their level of accountability is no more or less than that of any other nurse.

Care for a sick child at home is mainly provided by the parents, but, when visiting the family, the community nurse will be expected to provide support, guidance and some care. Parents need to see evidence of a competent and confident practitioner. Such situations provide the ultimate opportunity for nurses to exercise their professional judgement. Dowding and Thompson (2003) argue that judgement and decision-making can have a significant impact upon the outcomes for patients. Where individual nurses are working within a team of professionals, then professional development and professional dialogue are more likely to happen than when a nurse is working independently, for example in the long-term continuing care environment for a child dependent on technology at home. Children with long-term conditions can be cared for by care assistants or nursery nurses/healthcare support workers who may only have had the technical training to provide the specific care needed by that child (Beale 2002) and are supervised and supported by one or two trained nurses. In these circumstances, where does the line of accountability lie? Although these carers are part of a larger team, they will be alone with the child at home. This form of care is a growing source of support to families in need of respite and, while Beale is emphatic that the most fragile children are still cared for by qualified children’s nurses, there is no doubt that the use of support workers is increasing in all care settings. The qualified nurse is accountable at all times and, by delegating work to a person who is not registered with the NMC, is accountable to ensure that the person is suitably trained to undertake care at the appropriate level.

Isolation in practice should be avoided and to that end, student nurses are not generally permitted to carry their own case loads in the community. Although in the past vacant posts in the community were seldom taken as first posts for newly qualified nurses, skill mix into community teams is now more acceptable and more newly qualified staff are interested in community career pathways. Wherever newly qualified nurses seek work, they do require support and guidance from more experienced staff in order to make the transition from student to registered practitioner (NMC 2002). To aid this process, they recommend a period of supported practice of no less than 4 months. This process is termed ‘preceptorship’ and involves the newly qualified practitioner working alongside an experienced practitioner who provides help, support and advice. Clinical supervision is another means of support for nurses at all levels and can be of value to lone practitioners. Clinical supervision can be undertaken on a one-to-one basis with another colleague or as part of a group meeting of the team discussing issues related to patient care that have given concern and can be used as a vehicle to explore accountability and practice issues.

Nurses working in the current environment of constant change need to develop coping skills to manage the changing environment. In circumstances where nurses are exposed to new areas of practice, whether students or registered practitioners, they must indicate any knowledge deficit and request appropriate orientation, education and support. It is the responsibility of all nurses to question when unsure and for nurses to constantly strive to add to their personal knowledge and enhancement of their professional skills. Nurses must recognise that they can learn from each other. In addition, nurses should be proactive in seeking out appropriate study days and courses to attend, demonstrating their commitment to education and sound practice.

ADVOCACY

In a professional context, the concept of advocacy remains central to children’s nursing practice. Martin (2004) defines an advocate as a practitioner, usually a nurse, who will promote and safeguard the well-being and interests of their patients by ensuring they are aware of their rights and have access to information to enable them to make informed decisions.

Changes at national level required nurses to demonstrate the ability to think about patients’ rights and advocacy. The NHS Plan (DoH 2000) required trusts to appoint advocacy services (known as PALS) so that patient concerns may be addressed at the time of concern and in a timely manner. Patients have supported this early intervention as they feel they are having their issues addressed as soon as possible. Research has identified that effective management of complaints comes from dealing with concerns at an early stage. Using complaints as a learning framework, rather than in a negative frame, can contribute to improved patient care by acknowledging possible shortfalls and, if necessary, by instituting changes to policy and practice. Also, involving patients in the complaint process wherever possible has proven to be effective.

The recent implementation of the Mental Capacity Act (HMSO 2005) has sought to strengthen the role of the advocate and requires that where vulnerable patients are involved in decision-making and have no one to advocate for them, that they are provided with an independent mental capacity advocate (IMCA) who will act in their best interests in supporting individuals to make decisions. The Act applies to those over 16 years of age.

Frequently, circumstances in the day-to-day care given to children provide nurses with ethical dilemmas and difficult decisions. The NHS Plan (DoH 2000) made a clear statement about the need for partnership between patients and professionals, a concept embraced some years ago in the majority of environments where children are nursed. Where nurses are working in partnership with parents and the child, trust is an essential element. Nurses are allowed into a privileged position and it is therefore important that they are aware of their own values and principles in any given situation. Charles-Edwards (2001), in reviewing advocacy and the role of the nurse, states that children are not likely to make formal requests for representation. It is therefore important that nurses have the skills to be able to offer advocacy.

Anecdotal evidence would suggest that nurses do not view it in the terms described above; rather, they interpret it within their daily activities of caring for children, speaking out and acting on behalf of the child. Examples of good practice from nurses’ reflections on their role as advocate are provided below:

Nurses frequently feel uncomfortable about restraining children for procedures when alternative methods may be as effective (RCN 2003). This has been re-emphasised more recently as the body of legislation and guidance about restraint has grown and the overriding message is that restraint should only take place if the child is likely to cause self-harm. The scenarios above provide evidence of nurses acting in the child’s best interests based on knowledge and best practice decision-making.

These scenarios also highlight the probable imbalance of power between healthcare professionals and patients, particularly between doctors and children. They indicate the vulnerability of sick children and their need for support when confronted by paternalistic medical professionals (Charles-Edwards 2003). While it would be unjust to label all doctors as paternalistic, there has been a tradition within medicine that the doctor knows best and therefore patients and nurses will do as they are told. In fairness to medical colleagues, nurses can also sometimes be too eager to exert power over children and parents in their care. Making judgemental statements about parenting skills, displaying negative attitudes and failing to provide opportunities for parents to participate in their child’s care are just some examples of how nurses might demonstrate that they think they know best.

Charles-Edwards (2003) suggest that children will say ‘yes’ because it is seen as what they should do. Although this refers to the involvement of children in a research study, it could be translated into a variety of other situations including treatments. Such behaviour may enable the busy nurse, working within a restricted timescale, to complete the dressing, administer the intravenous drugs or apply the skin care. Children may comply with this type of behaviour, but it does not reflect the spirit of advocacy and raises questions about whose best interests are being served. There are times when nurses may think that they are acting in a child’s best interests. For example, in another case, a staff nurse returned from the operating theatre to the children’s ward with a child before her operation had taken place, because the anaesthetist was not ready to receive her into the anaesthetic room. The staff nurse had decided that it was in the child’s best interests to wait in the less stressful ward environment rather than in the busy corridor by the operating theatre; there is no evidence to suggest that the nurse had consulted with the child. Furthermore, the child may have been told that, by the time she returned to the ward, her operation would be over. Also the nurse may have caused the child’s parents to be unnecessarily alarmed by the action of returning their child to the ward. In this scenario, the nurse may have created more tension. It would seem that, if the nurse had not consulted with the child or explained what was happening, the nurse had confused the role of advocate with that of exerting power.

In almost every case, when a child is sick, parents and immediate family are faced with uncertainty and ambiguity about the treatment and outcomes of the illness. Shields et al (2006) argue that when children are ill, the roles of parents and staff are important and that these need to be flexible and can change. It would seem that there is a strong argument for not asking parents to relinquish their parenting role, but rather enabling them to adapt. Strategies for this adaptation need to be employed by nursing staff. Such strategies provide ideal opportunities for nurses to act in the child’s best interests. This may be done through negotiating what care parents wish to participate in and that which they prefer to hand over to nurses. The idea of nurses being told by parents what they may do for their child could be difficult for some nurses to accept, particularly if they have to embrace the concepts of family-centred care and partnership. If nurses view advocacy as a dimension of the nursing role, then it would seem essential that partnership would need to be incorporated into the nursing strategy.

Changes in ideology concerning public/patient involvement over the last several years have meant that nurses need to demonstrate the ability to think about patients’ rights and advocacy. Within the concept of family-centred care, the child is seen as part of the family; therefore, when advocating for the child, there is an argument that the advocacy role also includes the family, particularly where the child is younger or lacks competence. This raises questions of how nurses view their advocacy role, particularly when confronted with situations where there may be conflicts of interest.

Another dimension of the nurse’s advocacy role may be seen in working with parents to gain their child’s cooperation in a treatment regime, for example teaching the child newly diagnosed as having diabetes about diet and administration of insulin. Similarly, an older child with cystic fibrosis may find the frequent drugs and physiotherapy tedious. Negotiation with the child and parents can enable a more positive approach, with everyone acting in the child’s best interests.

When nurses act as advocates for children, they should ensure that recent national policy documents, for example the NSF (DoH 2004a) and Every Child Matters (DoH 2004b), are implemented in the care settings in which they work and that care and outcomes are audited, measured and evaluated against these policy frameworks.