One of the greatest achievements in this century is the improvement in the standard of health care. Child health, in particular, has made great strides. World Health Organisation figures show that infant and child mortality rates are on a steady decline world-wide. With this, there is also a change in disease patterns. The leading causes of death are no longer infective diseases e.g. measles and tuberculosis. Rather, chronic illnesses are becoming the leading cause of morbidity and mortality. As the standard of care continues to improve, the number of children with chronic illnesses surviving will continue to increase. This has resulted in a shift in the focus of health care, from ensuring survival to enhancing the quality of life of those who do survive. The impact of a chronic illness, thus, becomes an important concept to understand and appreciate.
A chronic illness is defined as one that was present for, or expected to last a lengthy duration. Examples of childhood chronic illnesses include asthma, allergies, cancer etc. The frequency of a child with a chronic illness is not as low as we might imagine. A 1991 study on the prevalence and impact of chronic illness among adolescents estimated that 31.5% of the adolescents in the United States had one or more a chronic illness, with 4% of the paediatric population sustaining significant limitations in functioning.
The role of the healthcare professionals in managing a child with a chronic illness is probably the clearest of them all. Medicine, however, is far from being the panacea of all sickness. In fact, in many diseases, the physician's role revolves around controlling the condition or retarding its progression. The physical effects of a disease are perhaps the most obvious manifestation. The psychosocial aspects, on the other hand, are more silent and can be easily overlooked or taken lightly.
A chronic illness incurs special needs such as daily medical treatment, special education, social services, limitations in daily activities etc. These are challenges that can easily become a burden because of their permanence. There is no doubt that having a chronic illness in childhood is associated with an increased risk of psychological and behavioural problems. Research has shown that children with chronic illnesses sustain more emotional trauma. An Ontario study showed that children with both chronic illness and associated disability are at three-fold risk for psychiatric disorders and at considerable risk for social adjustment problems. Children with chronic medical conditions but no disability were at considerably less risk: about a two-fold increase in psychiatric disorders but little increased risk for social adjustment problems. Common psychosocial problems encountered include low self-esteem, feelings of isolation and poor academic performance.
There is, however, also evidence that not all children with the same condition develop the same psychosocial problems. This suggests that moderating factors may have a role in determining the outcome. Recent research have focused on trying to identify these risk and protective factors, with the hope that a better understanding would help us predict and/or prevent these problems. Broad groupings identified so far include the characteristics of a condition, the personality of the child, the family structure and the community.
The findings of the Ontario study and several other studies suggested that the characteristics of a condition affected the outcome of a child. Further research into this area has yielded several factors. An uncertain prognosis, a remitting course, an unstable symptoms (e.g. a seizure), an invisible condition, complex therapies or chronic pain all predispose to risk. Child factors are less well studied as the characteristic of a child changes with time. While little is known, evidence shows that the male gender, a temperamental personality, and intellectual impairment predisposes to risks.
The family system may either be a source of risk or protection to the child. The opposite also holds true. A child with a chronic illness may also affect the functioning of the family. Chronic conditions can present the family with a whole set of extra tasks, responsibilities and worries. These demands can take over family life and can have an impact on the affect of a parent, financial security of a family and interfamily relationships. The way a family responds to the young person can either magnify or moderate these risks. Family flexibility, adaptive coping, social integration, positive meanings ascribed to condition, good communication, and clear boundaries all appear to be good moderating variables. Research has also shown that the siblings of children with chronic illness are generally only at a slightly increased risk for psychiatric disorders or social maladjustment. Hence, siblings should be offered treatment only when sound clinical indications are found.
Families, in turn, are part of the communities in which they live. Informal support networks appear to be the key in assisting families. If informal supports are not sufficient, formal helping systems (e.g. social work and or psychological services) may be the solution. An important part of the child's community is the school, since most children spend a large part of their lives there. Studies have shown that participation in school also has a great effect on a child's sense of belonging and good self esteem. It follows that the lack of it has a negative effect. Young people value school but they need support from others to help them cope. Even when an illness does not itself result in cognitive impairment, children with chronic illness perform less well academically than their healthier peers. Informal supports most frequently cited included parents (especially mothers), teachers and close friends.
The main difficulties faced in school were the implications of school absence, exclusion from school life, teachers' reactions to illness or disability, and peer relationships. Absenteeism from school may be the result of doctor's appointments, treatment days or sick days. Coping strategies used by students included using lunch breaks and free periods to work, making arrangements to prioritise subjects, arranging for notes to be taken in their absence, having work sent to them at home, and access to teachers who will explain it to them. Exclusion from school life predisposes to a feeling of isolation. Where possible, efforts should be made to modify school activities so as to allow participation. Teacher's reactions are also crucial to how a young person with a chronic illness feels about school. A teacher was viewed to be understanding if he/she were aware of their health condition, understood its impact on their school work and activities, made appropriate modifications to activities with minimal fuss. Peer relationships can also either be a source of support or misery. Some children report having friends that "watch out" for them and support them while others report problems with peers. The latter include bullying and isolation.
Despite the odds seemingly stacked against them, the outcome for children with chronic illness is not necessarily bleak. There are data that suggests that these children can make a smooth transition to adulthood given the right environment. As growth and development are dynamic processes, the risk-protection ratio can be changed. It is hoped that this knowledge will give us the opportunity to enhance the lives of children with chronic illnesses.
Reference:
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