The Family Life of Sick Children

A Study of Families Coping with Chronic Childhood Disease

Lindy Burton

• Publisher: Routledge
• Year: 2022
• ISBN:
  9781000580204
• Edition: 1
• Topic: Sozialwissenschaften
• Subtopic: Globale Entwicklungsstudien

Originally published in 1975, this book traces the problems which arise for families coping with a chronic childhood disease – cystic fibrosis. The discussion of these problems is important for the families of other seriously ill or disabled children, all of whom are faced with similar implications of their situation. The book looks at the stressful situations which face them: mastering the child's treatment technique, assisting them to come to terms with their disease. It deals with the practical problems which arise for the parents and siblings of a sick child and explores the profound repercussions of the loss of a child on the entire family, considering the ways in which many of these families managed to transcend their problems.

1 Children with cystic fibrosis

This is a study of the family life of one very special group of sick children—children suffering from cystic fibrosis. This disease is inherited—in fact, it is the most common inherited disease in north-west Europe—with one in every twenty of us carrying the faulty gene which produces the disorder. Despite this, until recently, most people had never heard of cystic fibrosis.¹ In one sense this was not surprising. The disease was only detected in 1939, and knowledge of it was slow to spread. For many years children suffering from cf went undiagnosed, being labelled ‘delicate’ or ‘chesty’. Until the advent of antibiotics, little was available to counteract the lung infections which form the scourge of this disease, so even children correctly assessed as suffering from cf could not benefit from adequate medication. As a result few cf children lived much beyond infancy, and most died long before school age with symptoms resembling gastroenteritis or pneumonia.

Fortunately in the past ten years diagnostic procedures have become more accurate, and treatment has improved, with the result that more affected children are being detected early, before crippling physical damage can occur, and, when given adequate preventive treatment, live longer. Because of this, interest has begun to focus on the quality of life provided for the sick child and his parents, and research studies such as this, have gone beyond therapy and diagnosis, to include the social and psychological wellbeing of the child and his family.

¹ Hereafter abbreviated to cf.

Basically cf presents the child with numerous problems. Because the disease produces a thickening of the mucus throughout the body, many of the child’s internal organs become blocked. This affects different children in different ways, though most children have trouble with their lungs. Whereas normal mucus is thin and slippery, and helps in the expulsion of germs and dust, the mucus produced by cf tends to gum up the breathing tubes, leading to infection and lung damage. As a result, many cf children have difficulty breathing. They wheeze, choke, or emit constant irritating coughs. When they try to run or exert themselves they have insufficient breath, and have to stop and choke. Whilst frequently present from earliest days, and often producing vomiting in the baby and young child, such problems become most noticeable and most distressing for the school-age child who is expected to participate in team games, or take part in the normal rough and tumble of everyday play. In every way the cf child is disadvantaged, being slower in running than his well peers, having to pause often to cough, and being unable to clamber easily over obstacles or equipment. Thus often cf children fall behind in play, choosing increasingly younger companions.

The sticky mucus tends also to block the tiny ducts from the child’s pancreas, thereby preventing an adequate flow of enzymes into the child’s digestive tract. This leads to poor absorption of food, especially of fats. As a result, cf children, if left untreated, fail to put on weight or thrive, despite a normal intake of food. Instead they remain frail and skinny, and pass large, foul-smelling, bulky motions. Naturally these physical attributes do nothing to add to the child’s self-esteem, and, with increasing age, many cf children remark disparagingly on their smallness and apparent frailty, both of which are additional obstacles to full participation in normal rough and tumble.

In extreme cases the mucus can be so thick that a blockage occurs in the child’s intestines in the first days of life, requiring immediate surgery. This not only puts a strain on the infant and his parents, but produces scars which can be a source of embarrassment in later years.

As yet no cure is available for cystic fibrosis, and children born with it need constant care. In addition, both they and their parents are haunted by the realisation that without such care the child may die. Cystic fibrosis can still prove fatal, and indeed ranks third after accidents, and malignant diseases, as a killer in childhood. To counter this possibility the cf child requires vigorous treatment, beginning as early as possible, preferably before any lung damage has occurred. Replacement enzymes are needed with every meal so that the sick child can better digest his food. Special diets or extra vitamins may be required to help him grow, and antibiotics are given either intermittently or continuously to combat lung infections. In addition, every cf child must have physiotherapy twice or thrice daily to help expel the sticky mucus from the lungs, and some children may need to sleep in a special tent, which is filled with dampened air, so that they can breathe more easily. All this treatment is normally given in the child’s own home and has to be provided by the parents. Obviously such an extensive programme challenges even the most able. It also adds to the cf child’s sense of difference. As he grows he becomes increasingly aware of the fact that other children do not live as he lives, and it is not long before he wants to know why.

Besides these many illness symptoms, and their counterbalancing treatments, cf children and their parents have to contend with swift and often unexpected changes in the child’s physical state. One day a cf child may seem in normal health, the next day he may be grappling with a lung infection or a bowel blockage. Hospitalisation may be imperative. Fortunately not all children are severely affected. Considerable individual differences are apparent both in the degree to which children are affected by the illness and also in the type of symptoms which predominate. Some children may be quite mildly affected, and lead lives almost indistinguishable from normal, others are truly invalided.

Cystic fibrosis compared with other chronic diseases of childhood

Whilst it may be argued that the number of children suffering from cf is relatively small,¹ none the less, in many ways cystic children typify children suffering from other more common disorders. A consideration of their difficulties and problem-solving techniques can, therefore, assist those interested in the welfare of other handicapped children.

¹ Aproximately 1 child in every 1,600 is born with cf in the United Kingdom, so that approximately 400 new cases occur every year.

Inevitably cf involves parents in an extensive home-based treatment programme. The work load is considerable. Thus families coping with cf closely resemble families coping with physical handicaps such as spina bifida or cerebral palsy,¹ or, indeed, mental handicaps such as mongolism.² Whilst the actual care required is somewhat different, the encroachment on parental leisure, and the drain on parental energies is much the same. Similarly, mothers of all these children may find themselves unable to accept outside employment because of the need to care for their handicapped child, or to arrange and fit in with special schooling facilities.

Cystic children require regular medication, and frequently some alteration in their diet. In this they closely resemble many other chronically ill children. For example, diabetics require regular administration of insulin, asthmatics require preventive inhalations, coeliacs a cereal-free diet, and phenylketonuriacs a diet free from phenylalanine. Although the actual therapeutic agents and dietary regimes are different, the end product in terms of the child and his parents is a regularity of life, an increased interest in bodily functions and a limitation of freedom.

Cystic children often require emergency hospitalisation to combat lung infections and bowel blockages. Similarly asthmatics are admitted to hospital when an attack becomes too severe to be dealt with at home. Haemophiliacs also require hospital admission whenever bleeding cannot be controlled. Such hospitalisation increases parental anxiety and can diminish the child’s self confidence, contributing to emotional difficulties, both at the time and subsequently.

These problems put strain on the parents of cystic children. In addition, as with parents of spina bifida, mongol, phenylketonuriac and haemophiliac children, they are disturbed by the knowledge that their child’s disease is inherited. The pattern of inheritance, and the risk of repetition differ, but the sense of guilt and responsibility is constant. These parents are further strained by the need to consider family limitation.

¹ Cerebral palsy occurs at the rate of approximately 1 in every 300 live births in the United Kingdom. ² Mongolism occurs at the rate of approximately 1 in every 600 live births in the United Kingdom.

As emphasised previously, until recently cf carried a very high risk of early mortality. Now, fortunately, this risk has been reduced and the outlook for affected children is increasingly better. Nevertheless, there is still no cure for cf, and without proper treatment it can prove fatal. Parents, appreciating this, are forced to accept the possibility of losing their affected child long before such loss should occur. They must, therefore, live through a process of anticipatory mourning, and adjust their expectations accordingly. Thus they closely resemble the parents of children suffering from some, as yet incurable, forms of cancer and leukaemia. Whilst the outlook for such children is also improving, these diseases are still potentially fatal and parents must adapt to this fact. In all these cases the parents’ consequent emotional and physical distress is both considerable and long-lasting.

Previous studies of families coping with cf

Few systematic studies of cf families exist, though some sketchy descriptions and fragments of information concerning such families have appeared in social work and medical journals during the past decade. Generally these early reports suffer from a lack of exactness. Social and psychological problems observed in cf patients and their families are attributed solely to the disease, and few attempts are made to evaluate other potentially causative factors, such as previous distortions in the personality of the individuals concerned, or financial and social pressures not directly related to the illness. No incidence is given of the problems observed, rather it is usually implied that all patients and their parents suffer equally. But this is not so. Considerable individual differences do exist. Whilst some families are truly crippled by their experiences, others emerge largely unscathed or even strengthened. The early studies, by over-generalising, mask these differences, and therefore obscure one essential aspect of the problem, that is, the factors which make for strength or weakness in the face of chronic disease.

Similarly, few early studies attribute any significance to cultural factors in shaping family attitude to cf. Yet cultural, racial, and socio-economic differences are vitally important determinants of family attitudes and behaviour. Even the presence or absence of economic help for families of handicapped children may have a profound effect on the ability of such families to contend with the emotional stresses involved. The sadness...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Original Title Page
• Original Copyright Page
• Dedication
• Table of Contents
• Tables
• Acknowledgments
• Introduction: Sick children and their parents
• 1 Children with cystic fibrosis
• 2 Recognising preliminary symptoms and obtaining an adequate diagnosis
• 3 Learning the diagnosis
• 4 Understanding the illness
• 5 Coping with an inherited disease
• 6 Giving the child his treatment
• 7 The child in hospital
• 8 Practical problems posed by chronic disease
• 9 Talking about the disease
• 10 Changing hopes and expectations for the sick child
• 11 Sick children
• 12 Brothers and sisters of a sick child
• 13 The loss of a child
• 14 Learning to live with a chronic disease
• Some organisations which may be helpful to parents
• Bibliography
• Index