Children, Families and Chronic Disease

Psychological Models of Care

Roger Bradford

• Publisher: Routledge
• Year: 2002
• Print ISBN: 9780415131476
• eBook ISBN: 9781134789498
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

Chronic childhood disease brings psychological challenges for families and carers as well as the children. Roger Bradford explores how they cope with these challenges, the psychological and social factors that influence outcomes and the ways in which the delivery of services can be improved to promote adjustment. Drawing on concepts from health psychology and family therapy, the author proposes a multi-level model of care which takes into account the child, the family and the wider care system and how they interrelate and influence each other.

Part I
Introduction

Chapter 1
What is chronic disease?

Introduction

Susan: a case study

Susan is a 5-year-old who has a diagnosis of acute lymphoblastic leukaemia. Initially Mrs Wilkins coped well with the increased demands of having a child in hospital, but being a single mother meant that she had to give up her work to be with her daughter. The time Mrs Wilkins spent in hospital meant that Susan's younger brother saw less of his mother and he soon started to show behaviour problems.

By the time Susan was admitted for her next course of treatment, she appeared distressed and refused her injections, Susan told the nurse the treatment made her lose her hair and made her feel sick. For the first time Susan started to question why she had cancer and would she get better, because she had heard that another child with the same condition had died.

Mrs Wilkins was also finding the medical regime tiring. The anxiety about her daughter's condition, coupled with the children's constant demands, increasingly took an emotional toll. She felt that the ward staff and doctors were too busy to be interested in her problems and she became increasingly despondent.

Sam: a case study

Sam is a 6-year-old boy who has biliary atresia (a potentially life-threatening liver disease). He had an operation when he was a baby to correct his liver defect and whilst this was partially successful, he has recently developed oesophageal varices. This is a very distressing and frightening condition, where arteries in the windpipe can suddenly rupture, causing massive, uncontrolled bleeding. Sam has

spent a large amount of time in hospital as a result of his liver disease, but despite this is remarkably well adjusted and copes well with his admissions. Both his parents are aware of their child's precarious health, but are able to maintain an optimistic outlook and actively take steps to make sure that Sam's and their own lives remain as normal as possible.

The case studies of Susan and Sam illustrate vividly many of the issues involved in coming to terms with the challenges of chronic childhood disease. There is the shock of diagnosis that has to be coped with, the treatment of the disease itself and then the ongoing disruptions and uncertainties which can have a knock-on effect on the whole family. Equally, the case study of Sam demonstrates that adjustment problems are not inevitable, even when a child and his or her family are faced with the most difficult of circumstances. This book is concerned with exploring the factors that influence how children and their families do come to terms with chronic disease and the processes that underlie this. Through exploring these issues, I hope to highlight ways in which families at risk of poor coping might be better identified and helped in their adjustment.

Modern health care can be said to have two main aims: to increase the life expectancy of the population and to improve the quality of people's lives (Kaplan et al., 1989). Developments in paediatric medicine, which have included a growing emphasis on primary and secondary prevention, the widespread use of immunisation and screening programmes (Hall, 1992), improvements in neonatal care, surgical techniques and post-operative procedures (Zitelli et al., 1986), coupled with the development of new medicines and treatments, have all served to ensure, on the one hand, the virtual eradication of some common childhood illnesses, and on the other, the survival of many more children with conditions that previously would have proved fatal.

As a consequence of these developments, 'chronic disease' has become a new illness that paediatricians and others must now treat.This new challenge has resulted in changes in the organisation of hospital and community services and in clinical practice, as professionals have had to develop their technical expertise to deal with the particular difficulties that this group of children can encounter. The Piatt Report in 1959 recognised some of these challenges and, in doing so, set a blueprint for how hospital care should be provided, borrowing many of the concepts from theories of attachment that were being advanced at that time (Bowlby, 1971; Robertson, 1958). No longer were children expected to be isolated from their families during hospital admissions; rather, the care-taker was encouraged to stay with their child and to take an active role in preparing and helping their child cope with the experience (Sainsbury et al., 1986). Pressure groups, such as the National Association for the Welfare of Children in Hospital (NAWCH), became a powerful lobbying force in ensuring that these changes were implemented and that the emotional care of children and families became as important as their medical management.

As a result of these collective pressures, paediatricians, nurses and others have had to develop an increasingly sophisticated understanding of the psychological needs of children and their families (Munson, 1986) and have had to develop communication skills to meet these (Ley, 1988). Whilst it is undoubtedly the case that significant progress has been achieved in helping children with chronic diseases and families cope and adjust, it is equally apparent that we still need to strive to ensure that the emotional needs of children and their parents are recognised and met.

Definitions

Perhaps one of the most difficult tasks in writing about chronic disease is to be clear what is meant by the term.

If one looks at the various studies that have attempted to map out how many children are affected by chronic diseases, it becomes very clear that a number of definitions have been used. For example, the Isle of Wight study considered children to have a chronic disease if their condition was associated with 'persisting or recurrent handicap of some kind [which] lasts for at least one year' (Rutter et al., 1970:275).

Others have suggested that chronic disease refers to 'a disorder with a protracted course which can be progressive and fatal, or associated with a relatively normal life span despite impaired physical or mental functioning' (Mattsson, 1972: 801). Pless and Pinkerton specified the following parameters in their definition of chronic disease: '[It is] a physical condition, usually non fatal condition, which lasts longer than three months in a given year, or necessitates a period of continuous hospitalisation of more than one month in a year' (Pless and Pinkerton, 1975:90).

Eiser (1990) has defined chronic diseases as 'conditions that affect children for extended periods of time, often for life. These diseases can be "managed" to the extent that a degree of pain control or reduction in attacks, bleeding episodes or seizures can generally be achieved. However they cannot be cured' (Eiser, 1990: 3). Hobbs and Perrin (1985) argue that a chronic disorder is one 'that lasts for any substantial period of time, or has sequelae that are debilitating for a long period of time' (Hobbs and Perrin, 1985: 2). They note that such conditions 'persist for a number of years after onset and have a variable course with some improving, some remaining stable and some becoming progressively worse' (Hobbs and Perrin, 1985:2).

These definitions highlight that whilst there is a general consensus as to what constitutes a chronic illness, namely that the condition is protracted and can result in a number of diverse and adverse outcomes, ranging from normal life expectancy to death, researchers have none the less placed differing emphases on certain aspects of the definition, particularly in relation to the issue of 'chronicity' and 'severity'.

The lack of agreed terminology has resulted in marked variations in how many children are thought to suffer from a chronic disease.

Prevalence

Research into the prevalence of chronic childhood disorders suggests a rate of approximately 10-15 per cent in the general population (Pless and Nolan, 1991), with 10 per cent (or 1-2 per cent of the total childhood population) having a condition that could be deemed severe (Pless and Roghmann, 1971). These figures represent an aggregate rate, as individual epidemiological studies have produced somewhat conflicting estimates, with prevalence rates ranging from 6 per cent (Rutter et al., 1970) to 14 per cent (Cadman et at, 1987) to 30 per cent (Mattsson, 1972).

The reasons for these discrepancies in prevalence are complex. As has been highlighted already, the exact definitions used to operationalise 'chronic disease'can significantly influence the number of children subsequently identified. Similarly, the methods of study employed to identify 'cases', for example, questionnaires in comparison to interviews, as well as the location where the research is carried out, contribute towards producing differing sample characteristics and hence differing prevalence rates (Gortmaker and Sappenfield, 1984). To take an example, in Rutter et al. 's (1970) study, prevalence figures are the result of investigating all children aged between 10-12 years on the Isle of Wight. Cases were identified initially on the basis of medical records held at schools and hospitals, and by parental screening questionnaire. Subsequently, those identified as having a possible disorder were followed up intensively, where a final diagnosis was made.

It is important to note that in using 'chronic physical handicap' as their criteria for case selection, Rutter et al. (1970) excluded other conditions that some researchers might have included (for example, obesity and chronic migraine). It is also apparent that Rutter et al. (1970) excluded 'milder' degrees of handicap from their final analysis (certain respiratory and sensory disorders). This has led some to suggest that the resulting prevalence rate of 6 per cent represents a 'conservative' estimate (Pless and Roghmann, 1971). In contrast, Mattsson (1972) included in his study all those conditions not studied by Rutter and colleagues, and indeed extended the definition of chronic childhood illness to encompass not only those with visual and hearing impairment, but also those with disorders of speech, learning and behaviour, as well. Given this wide-ranging definition, it is perhaps not surprising that a significantly higher prevalence rate of childhood 'disease' was obtained.

Approaches to Classification

Clearly, there is less consensus as to what constitutes a chronic disease, and therefore its prevalence, than might have been expected. This lack of agreement extends also to the issue of whether it is possible to develop a system of classification within chronic diseases, in order to study, for example i) the impact of particular chronic childhood ii) conditions on psychological outcomes. If it is possible to arrive at a classification system, there is an ongoing debate as to how useful such schemes are. Such attempts at classification tend to fall into three main types: those that seek to group disorders on the grounds of their aetiology, their disease characteristics or their severity.

Aetiology

An example of this approach to classification is described by Fielding (1985), who amended Mattsson's (1972) original classification system. Fielding suggests that there are five main causes of disease and that the psychological effects of chronic disease should therefore be studied in relation to these categories:

• Diseases due to chromosomal aberrations: Down's, Klinefelter's and Turner's syndromes.
• Diseases as a result of abnormal heredity traits: sickle cell anaemia, cystic fibrosis, muscular dystrophy, diabetes myelitis.

• Diseases due to interuterine factors: damage caused by infections, for example rubella, and damage caused by other factors such as drugs or radiation exposure.
• Disorders resulting from perinatal traumatic and infectious events, including permanent damage to central nervous system and motor abilities.
• Diseases due to postnatal and childhood infections, neoplasms and other factors: meningitis, renal failure, physical injuries resulting in permanent handicaps, mental illness and mental retardation of organic aetiology.

(Fielding, 1985:34)

This approach has the advantage that it mirrors closely the way in which paediatric medical services are organised, that is in terms of their sub-specialities. Thus, from a medical model, it may well make sense to think about the effects of chronic disease in terms of their impact on services and level and type of medical expertise required. However, it is less certain whether, and if so why, the psychosocial impact of chronic illness follows these diagnostic lines. For example, do children with abnormal hereditary traits differ psychologically as a group in comparison to children who suffer postnatal infections, and if so, why should that be the case?

If one looks at the research, the evidence to date is somewhat contradictory as to whether specific groups of disease are in fact associated with specific psychological outcomes. On the one hand, studies have suggested that certain factors within groups of conditions are linked to increased rates of psychopathology. For example, Rutter et al. (1970) identified an increased risk of emotional and behavioural problems in children who had neurological disorders.

On the other hand, Pless and Perrin (1985), in their review of the literature, conclude that studies that have sought to establish a link between specific diseases and particular psychosocial difficulties in the child have largely failed to demonstrate any significant association As they see it, there is no such thing as a 'typical' psychological profile that applies to a specific disorder. Pless and Perrin (1985) argue that there is in fact far more evidence for the contention that 'common' reactions and problems occur, a point to which we will return shortly.

Disease characteristics

An alternative approach to classification advocated by Pless and Perrin (1985) is based on the hypothesis that psychological outcomes are mediated by specific disease factors. They suggest that diseases should be categorised in relation to whether they have an impact on

• the child's level of mobility-activity,
• whether the course of the disease is static or dynamic,
• the child's age when the disease process starts,
• whether the child's cognitive and sensory functioning is affected, and
• whether the condition is visible.

Pless and Perrin's (1985) argument is that the above dimensions may be important in teasing out the variable impact of 'chronic diseases' on children. For example, mobility-activity could be an important dimension, as many disorders that affect mobility require orthopaedic surgery as well as costly appliances and physical therapy for rehabilitation. Children requiring this level of support and intervention might experience, therefore, difficulties entering mainstream schooling and might, for example, find difficulty joining in with peers at recreation times. This might then have a knock-on effect to their development of self-esteem and social skills. Equally, diseases that affect mobility might increase the burden on mothers as the prime care giver, not to mention additional hardship, which could have indirect consequences on both maternal and child adjustment.

Whether the course of the illness is static (that is, a relatively fixed deficit such as a neurological impairment) or dynamic (changes over time) may also be important to distinguish. For example, whether the course of disease is predictable towards improvement or decline, or whether it is marked by exacerbations, with times when the child may be relatively healthy and others when he/she may be quite ill, could have important implications for adjustment. Equally, age of onset may have a differential effect on adaptation. For example, children with early onset problems (for example, liver and congenital heart disease) may have different developmental and service needs from those with later onset conditions (for example, diabetes or asthma). Similarly, children who have grown up with their disease might show differing patterns of adjustment in comparison to those who have been healthy and then acquire a disability later in childhood.

Whilst Pless and Perrin's (1985) overall hypothesis has face validity, it has not been subject to substantial empirical investigation. Where studies have explored individual dimensions of the model, such as the effect of disease visibility on adjustment, the results have proved rather inconclusive, with some studies finding an association, whilst others have failed to do so. For example, Mulhern et al. (1989) followed up long-term survivors of childhood cancer. They found that whilst the children showed subtle adjustment problems (four-fold increase in school problems and somatic complaints of unknown origin over the general population), it was the presence of functional disorders, not how visible the disease was, that increas...

Table of contents

• Cover
• Title
• Copyright
• Contents
• List of figures
• List of tables
• Preface
• Acknowledgements
• Part I Introduction
• Part II Psychological studies
• Part 3 Implications for theory and practice
• References
• Index