Introduction

Although children in Australia enjoy a long life expectancy and high level of wellbeing, paediatric death remains a sad reality for some families, and end-of-life care for children presents an important and challenging area of paediatric nursing practice.

The rate of child mortality in Australia more than halved from 30 to 13 deaths between 1986 and 2006, due to a reduction in the number of paediatric deaths from transport-related accidents; however, the mortality rate stabilised between 2006 and 2010 (AIHW, 2012). Among children aged 1–14 years between 2008 and 2010, the leading causes of death included injury (34 per cent), cancer (17 per cent) and nervous system diseases (11 per cent) (AIHW, 2012).

As a beginning paediatric nurse, it is important that you understand that the terms paediatric palliative care and paediatric end-of-life care are conceptualised differently, despite some overlap. Paediatric palliative care begins when a disease is first diagnosed, and continues throughout the illness trajectory. It therefore includes, but is not limited to, end-of-life care (Crozier & Hancock, 2012). The majority of paediatric palliative care is delivered by hospital-based or community teams in the last six months of a child's life (Crozier & Hancock, 2012). Paediatric end-of-life care is the care provided to the child and family towards the end of a child's life, and includes care of the child's body and support for the family following the child's death. Although there are distinctions between the two terms, in this chapter they will be used interchangeably.

The World Health Organization (WHO) definition of palliative care for children was developed in 1998 in recognition that paediatric palliative care, although related to adult palliative care, is a distinct and specialised area. The WHO (1998) definition includes the following principles:

Introduction

As a nurse caring for paediatric patients, it is important for you to develop the ability to recognise and respond to a sick infant or child. The ability to do this is so important that a variety of projects have been undertaken, both internationally and throughout Australia, to ensure that nurses working with paediatric patients are able to recognise, respond promptly to and appropriately manage sick and deteriorating infants and children. Examples are the Between the Flags program in New South Wales, the Victorian Children's Tool for Observation and Response (VICTOR) and the Children's Early Warning Assessment Tool (CEWT) in Queensland. These programs aim to support the assessment skills of the clinician working with infants and children. Paediatric early warning tools help clinicians to recognise a deteriorating infant or child, and trigger an escalation in care to prevent further deterioration and achieve favourable outcomes. This chapter will provide you with a basic understanding and knowledge so that you will be able to recognise and respond to a sick and deteriorating child.

Clinical signs – a warning of deterioration – are often present in the paediatric patient as for as long as six to 12 hours before a catastrophic event. Failure to identify and treat these early warning signs can result in continued clinical deterioration until cardiopulmonary arrest. The poor outcomes associated with paediatric cardiopulmonary arrest emphasise the importance of being able to detect and respond to early signs of deterioration (McLellan & Connor, 2013).

The primary cause of paediatric cardiopulmonary arrest is respiratory in origin, and the second most common cause is circulatory failure.

Introduction

This chapter pays special attention to the responses of children, young people and their families to disruptions to a child's health. When a child experiences an acute or chronic illness, we can expect a number of emotional and behavioural responses. The paediatric nurse's knowledge of child behaviour and child development can be of great benefit in assisting parents and caregivers to promote resilience in the child or young person.

This chapter presents a series of case studies and case study resolutions to provide guidelines and recommendations for managing emotional and behavioural disorders related to children's experiences of illness. The case studies are presented within a framework of psychosocial development to best illustrate the relationship between child development and response to illness. The relationship is bidirectional – that is, responses are shaped according to the developmental stage of the child or young person, and development is impacted by the experiences of both acute and chronic illness. Consideration is given to cultural and social factors that influence the child's response to the experience of illness. This includes Aboriginal and Torres Strait Islander health considerations and the potential implications for care provided to children, young people and their families.

The psychosocial development of children and young people experiencing disruptions to health

Opportunities for developmental experiences that promote healthy psychosocial development may be limited or compromised by childhood illness. The presence of chronic illness may disrupt the pace and timing of developmental milestone achievements. Indeed, regression of previously mastered milestones may be observed. Long absences from school and limited opportunities for taking responsibility and the experience of achievement can compromise psychosocial developmental mastery.

Introduction

In this chapter, we focus on the nursing care of young people, or adolescents. The transition to adolescence is a complex and critical period of development, with significant social, emotional and physical changes. Similar to childhood, adolescent development and maturation is complex, and differs between individuals. When planning nursing care, consideration for the individual adolescent, their characteristics and their stage of development is essential.

The reasons why adolescents require admission to hospital are more likely to be related to an injury or chronic condition. While most injuries are mild, and can be managed at home by parents, there are times when care and treatment for injury or illness results in the admission of the young person to hospital. The nursing care of children and young people with a chronic condition is addressed in Chapter 10. In this chapter, we will focus on the care of young people who need nursing care due to common acute injuries. In addition, the management of young people with appendicitis will also be explored in this chapter, as the peak incidence of this condition occurs in young people. Adolescence is a time when many young people begin to experiment with alcohol and other substances, and this can result in acute and unexpected illness. Thus the management of a young person with alcohol ingestion is also reviewed.

Key issues for young people during Hospitalization

Injury, illness and admission to hospital can be significant interruptions in the life of a young person. Wherever possible, we do our best to minimise the disruption by avoiding admission and providing ambulatory care in the community when it is available and appropriate to do so. However, some situations do require admission; when this occurs, ideally a young person is best cared for in an adolescent unit – an environment that understands the unique psychosocial and physical needs of adolescents.