In this chapter, we broadly distinguish research as a process for deriving new knowledge, and evidence as the knowledge that is produced and used within a specific context. Evidence from other sources is also used to inform health and treatment decisions in paediatric settings.

We introduce audits and benchmarking as important tools for measuring healthcare quality and safety, and discuss their relevance to the generation of clinical research questions. Within the construct of research co-design and evidence-based decision-making, this chapter also discusses special considerations for conducting ethical research with children and young people. Acknowledging that there may be age or developmental challenges, we explore ways in which children and young people can be supported to become more involved in setting their own research priorities and designing and ‘doing’ research.

It can be difficult to determine when a child can be defined as having complex medical needs (Cohen et al., 2011). What one family finds complex, another family may adapt to more easily. One child with a particular condition may have less severity and more function than another child with the same or a similar condition. Furthermore, the discussion around the care of children with complex medical needs has often used different terms for similar things – care that is ‘medically complex’, or children who are ‘technology dependent’ or ‘medically frail’.

This chapter explores some of the causes of complex medical needs in children and young people, and discusses related nursing care and interventions. The important and central role of parents, caregivers and families in the care of children with complex needs is also considered. The chapter concludes by discussing the challenges facing young people with complex conditions and their families as they transition from paediatric to adult healthcare services.

This introductory chapter examines the health and wellbeing of children and young people growing up in Australia and New Zealand. Itlooks at the population characteristics of future generations, facilitators and challenges to healthy growth and development, and emerging health and social trends. It considers the health and wellbeing of children and young people as situated within their individual developmental journey. Whether born in New Zealand or Australia, or arriving as a child or young person, growth is nested within the social and cultural traditions of familyduring times of rapid social and environmental change.

The chapter begins by reviewing some of the common demographic and statistical indicator measures used to monitor the health and wellbeing of children and young people across the world. Being aware of the many different ways in which age and other measures are used to describe the health of children and young people can support the best use of the international evidence. The chapter then explores how these principles can be applied to key conditions and societal constructs relevant to the health and wellbeing of children and young people growing up in Australia and New Zealand.

Introduction

As a paediatric nurse, you will frequently care for children and young people with chronic conditions. Your initial contact may be during routine assessment, at diagnosis or during subsequent treatment (such as for the management of childhood cancers or type 1 diabetes). You may also be part of a team managing an acute illness in a child or young person with a chronic condition, as might occur during an exacerbation of asthma or a urine infection in a child with spina bifida. Depending on your role, your involvement may extend to a clinic, home, school or community – for example, if you are running a healthy weight program. If you work within one organisation or within one specialty practice for any period of time, you may form long-term relationships with chronically ill children and their families, becoming part of their lives as they grow into young people and adults – or, inevitably for some, until the end of their lives.

It is not usual to associate children and young people with chronic conditions, especially as some definitions relating to adult illness (such as cardiac disease) imply that chronic diseases are those for which action can be taken to prevent their occurrence (ABS, 2015a). However, the most recent available estimates indicate that between 2007 and 2008, 37 per cent of children and young people in Australia had at least one long-term chronic condition. This figure equates to more than 1.5 million future Australian adults (ABS, 2009). Asthma, diabetes and cancer are the most common chronic medical conditions affecting children in Australia, collectively accounting for 20 per cent of the burden of disease among children aged 0–14 years (AIHW, 2012), but the range of chronic conditions affecting children and young people is much broader.

Introduction

All people have a right to assume that health professionals are appropriately educated to focus their knowledge and skill on practice that is based on the best available evidence from research, and that this evidence informs the safety and quality of their care. Parents and carers of children and young people extend this assumption to health-care decisions made on behalf of those in their care. The tenet of using the best available evidence for decision-making is so self-evident and fundamental to health care that standards relating to quality, safety, research and evidence-based practice can be found in the professional registration standards of all health disciplines.

Research and evidence are intimately linked in nursing and health care, but each makes a slightly different contribution. We can broadly distinguish research as a systematic process for deriving new knowledge, and evidence as the knowledge that is produced and used. However, evidence from other sources is also used to inform health and treatment decisions – sometimes because good-quality evidence does not yet exist and sometimes because the evidence that does exist is not directly applicable to the context. The experience of the clinician or carer, the context of the health-care environment and the specific values and priorities of the child, family or community receiving care ultimately shape decisions about the quality of the evidence and how evidence is used. Sometimes these different sources of knowledge are categorised as external evidence (from research) and internal evidence (relating to the child, family, clinician or setting).