Information about the incidence, number of new cases of disease per unit of population in a defined period, and prevalence, number of new and continuing cases of disease, is limited. Statistics are more readily available for some chronic illnesses than others so overall rates are generally estimates. It can also be difficult to decide which chronic conditions to include in overall rates – for example should acne and otitis media be included? It is advisable to access information about the incidence and prevalence of specific chronic illnesses, for example it is suggested that there are currently 1.1 million children being treated for asthma in the UK (Asthma UK 2009) and 5–15% of children under 7 years suffer from atopic eczema (National Eczema Society 2009). There has been an increase in the incidence of certain diseases such as asthma and diabetes and an increase in the life expectancy of children with other chronic illnesses such as cystic fibrosis and cancer. Approximately one-fifth of children with chronic illness have more than one condition (Newachek & Stoddard 1994).

Completely new categories of chronic conditions are emerging as technology develops and childhood mortality rates improve. Preterm babies are surviving at earlier gestation and increasingly low birth weights. Organ transplants are enabling children to survive longer with previously fatal diseases and there are increasing numbers of ventilator-dependent children cared for both in hospitals and the community. Understanding of the hereditary influences on the incidence of chronic conditions is constantly developing and nurses need a sound knowledge of genetics in order to deliver excellent care and advice to families and to participate in the ethical debates about treatment (Valentine & Hazell 2007).

There is obviously a wide range in the severity of chronic illness both within disease categories and between them. Some diseases, such as atopic eczema, may be common but not always perceived as an illness. This can bring further problems to children and their families as their experiences and needs may not be understood and even trivialised. A study of the prevalence of atopic symptoms in the UK found that almost half of the 12–14-year-olds surveyed reported one or more of the symptoms, itchy flexural rash, rhinoconjunctivitis or wheeze – and 4% reported all three (Austin et al 1999).

Children with chronic illness may not only have the symptoms of the disease and consequences of treatment to contend with but they also have increased rates of mental health problems and psychological difficulties (Vessey 1999). It has been suggested that an appropriate assessment tool to detect such problems should be added to routine paediatric outpatient assessments to aid detection and appropriate referral to child mental health services (Glazebrook et al 2003). The importance of recognising and effectively managing psychological well-being is also supported by evidence that adults with persistent chronic illness from childhood which limit their daily life suffer more depression and lower self-esteem than those with non-limiting conditions or healthy controls (Huurre & Aro 2002).

There is now a considerable amount of information about specific chronic diseases available on the internet. Some of this information is aimed at health professionals and other information is more suitable for parents and children. Certain internet sources are not particularly relevant to families and health professionals in the UK but others are becoming an important resource. Useful evaluations of the use of the internet are provided by Pandolfini et al (2000) and Pandolfini & Bonati (2002). The following activities will help you to assess the usefulness of some specific websites.

To assess the effectiveness of interventions by nurses and other healthcare workers, it is necessary to use outcomes that are consistent with the focus on the experience of childhood chronic illness. Quality of life (QoL) is therefore an important concept in chronic illness. Measures of quality of life can either be generic or specific to particular diseases. The advantages of generic measurement would be that comparison could be made with healthy children. However, this is not practical with the instruments currently available: generic measures cannot detect differences that arise from the effects of particular illnesses, for example the effect of eczema on appearance. Therefore QoL is usually measured in children with disease-specific instruments (Eiser 1997). For this reason we use the term ‘health-related quality of life’ (HRQoL) to recognise that the topics addressed relate to health-related aspects of quality of life.

A valid assessment of HRQoL could enable assessment of the impact of an illness and the effectiveness of treatments and other interventions, including education about management, often provided by nurses. Consideration of QoL recognises children’s own ratings of their health and well-being and avoids over-reliance on physiological assessments, giving children a voice in their care and improving communication between children and practitioners (Eiser 2007).

Assessment of HRQoL is particularly challenging in children. The development of instruments must take account of the ‘response burden’, that is, the ‘extent to which issues of scale length or type of response need to be adapted for children’s language and cognitive skills’ (Eiser & Morse 2001). Children must be able to read and understand questionnaires used to assess quality of life. It may be more appropriate to develop instruments that appeal to children’s interests and do not demand high reading ages, for example computer games (Eiser et al 2000). It is also important to recognise that the meaning of QoL can be quite different for children and adults. Young children’s QoL is about having very shiny hair, lots of friends or running like a sports star rather than achievement of basic functional tasks (Eiser 1997). When adults rate children’s QoL their ratings are based on different frameworks to the children’s ratings, and it might even be that very close parent–child agreement is indicative of poorer QoL because childhood is about gaining autonomy and independence from parental views (Eiser 1997). As children develop ‘any measure needs to have an in-built sensitivity to accommodate the normative changes that would be expected to occur during childhood’ (Eiser 1997). It may therefore be necessary to ask different questions of children at different times in their lives and these questions may differ from those asked of parents when assessing QoL. There are challenges for researchers to develop new approaches to QoL assessment if they are to be child-centred.

HRQoL measures can be used in routine practice to identify specific issues of concern to children and to parents (Mussafi et al 2007). Health professionals need the training and facilities to analyse and interpret responses (Eiser & Jenney 2007). Practitioners should be careful to consider the way in which a measure has been designed and tested when deciding how to assess QoL in children with chronic illness. Some questions that can help to decide on the appropriateness of a measure are:

Chronic illness in childhood occurs in a social context in which a supportive relationship between parent and child is essential for successful management. The impact of childhood chronic illness on the lives of parents, the adaptation processes required and their needs have been the focus of a considerable amount of research (e.g. Canam, 1993, Elliott and Luker, 1996, Fisher, 2001, Gibson, 1995, Hentinen and Kyngas, 1998 and Hodgkinson and Lester, 2002, Lowes et al 2005, Young et al., 2002a and Young et al., 2002b). There is an acceptance that parents are the main carers of children with chronic illness and considerable effort has been made in trying to understand the impact of this role on their lives and how healthcare professionals can support them in their role and facilitate successful coping. Better understanding of the experience of parenting a chronically sick child is thought to improve the relationship between health professionals and parents and ensure that care provided is appropriate and meaningful. Good relationships between health professionals and parents are considered to be beneficial both for children and parents. For example, a good relationship between doctors and mothers of children with atopic eczema was found to be the strongest predictor of adherence to skin-care treatment (Ohya et al 2001).

The emphasis on the inevitable negative impact of childhood chronic illness and disability has been criticised by some authors. It is not disputed that parenting a child with chronic illness is stressful at times but whether this causes distress in parents is being questioned. The focus of research and nursing literature on the tragedy of childhood illness and disability, parental stress, the burden of care and need for successful coping mechanisms is beginning to shift and the positive contributions to family life of children with disability is beginning to be recognised (Kearney & Griffin 2001).

Treatment of chronic illness may have a positive or negative impact on children’s and parents’ QoL. Successful management of a disease may be at odds with children’s or parents’ experience of the illness and it is important that treatment outcome measures include consideration of patient and parent reported outcomes. International instruments to measure parents’ experience of childhood chronic illness, and which can be used to determine the acceptability and efficacy of pharmaceutical treatment, have been developed (Whalley et al 2002).

It is essential that any QoL instrument is developed from the perspective of those whose HRQoL it intends to measure. We have already suggested that a child’s perspective of HRQoL may be very different from that of their parents. In the majority of cases, the HRQoL instrument is developed from the analysis of qualitative interviews with patients and parents (Henry et al 2003). Analysis of these interviews provides information about the impact of the child’s disease on the family and their experience of living with childhood chronic illness. A distinction must be made between instruments that use parents to assess their child’s HRQoL and those that focus on assessment of the parents’ HRQoL.

As well as influencing parents’ HRQoL, the impact of chronic illness on families can be enormous. Efforts have been made to develop a scale to measure the impact of chronic illness on parents and families (Stein & Reissman 1980) and applied in specific diseases such as atopic eczema (Su et al 1997). Bonner et al (2006) developed and validated an instrument for measuring parents’ experiences of child illness which focuses on four critical domains of parental adjustment: guilt and worry, unresolved sorrow and anger, long-term uncertainty and emotional resources.

Within disease categories, parents’ estimate of the severity of disease has been found to be the single strongest predictor of family impact of the disease (Balkrishnan et al 2003). There may be differences in the perception of the impact of childhood illness between parents and paediatricians (Janse et al 2005) and it is important to recognise that it is the assessment of severity by the parents, and not by the professionals, that predicts the impact on the family. Chronic diseases considered as relatively minor by health professionals may in fact have a greater impact on the family than other more serious diseases. For example, Powers et al (2003) found that the QoL of children suffering from migraines as assessed by the children themselves and their parents was similar to that of children with arthritis and cancer. By contrast, assumptions of the negative impact on family life of children with severe disability are being challenged and the need for acceptance of the highly individual response of families must be recognised (Kearney & Griffin 2001). Some of the issues assessed by the measures are considered below.