A chronic medical condition is defined as an illness that lasts longer than 3 months, and is sufficiently severe to interfere with a child’s ordinary activities. According to the UK General Household Survey, as many as 10–20% of children experience a longstanding medical condition, with 5–10% having a moderately to severe long-term illness or disability.

The Effect of Chronic Illness on the Child

It is not only the severity and prognosis of a condition that influences how a child adjusts. In fact there appears to be little relationship between the severity of the condition and the extent of psychosocial difficulties. Children with mild disabilities may suffer as much or more than those where the condition is severe.

It is perhaps not so surprising that emotional, behavioural and educational difficulties are two to three times more likely than in healthy children. Low self-esteem, impaired self-image, behavioural problems, depression, anxiety and school dysfunction are all common. They may result from the child’s own response to the chronic illness or relate to how parents, peers, professionals and society react.

Children’s ability to perform at school can be affected, placing them at risk for becoming underachievers and failures in their own eyes and the eyes of their peers. School is often missed because of acute exacerbations, outpatient appointments and hospitalizations. Chronic illness affects social aspects of school life too. Frequent illness episodes and restrictions may exclude children from activities. Physical appearance, acute medical problems, taking medications at school and special diets all can contribute.

The Effect of Chronic Illness on the Family

When parents learn that their child has a chronic illness they tend to respond in a way similar to experiencing a bereavement. The initial reaction is shock or disbelief, followed by denial, anger and resentment, and eventually reaching an acceptance of the situation. It is not surprising that clinical anxiety, depression, guilt and grief are common, particularly for mothers, who often take the major caring role. It is also not surprising that marital problems may be exacerbated.

Siblings may also be at higher risk. Anxiety, embarrassment, resentment and guilt are common, as are fears about their own well-being and the cause and nature of their sibling’s health problems. Parents may be less available to their healthy children, and they may also neglect, overindulge or develop unrealistic expectations for them.

We tend to focus on psychopathology and psychosocial problems when considering chronic illness, but it is important to remember that the impact is not always negative. Some families seem to grow closer to each other and provide outstanding care for their children. The question often arises: ‘How do some families of chronically ill children survive so well?’

The Paediatric Care of Children with Long-Term Medical Conditions

Paediatric care of children with chronic illnesses needs to be holistic and go beyond clinical management alone. Time, good communication and skill are needed. This is particularly so around the time of diagnosis, and also at transition points such as starting school or during adolescence. At times, parents may need the opportunity to talk without their child being present, and adolescents should also be encouraged to be seen on their own—to talk about problems, and also to begin to be responsible for their own health care. The role of the paediatrician includes:

• Counselling: Concern and empathy can go a long way in assisting the family to make the best of the circumstances they face. It is important that the family knows that concealing a chronic condition (where that is possible) is rarely helpful as it encourages the child to believe that the illness is a secret and something shameful.
  
• Education: An important aspect of management is educating the family about the condition. This increases trust and provides the family with skills to self-manage many aspects of the condition—particularly critical in conditions such as asthma and diabetes.
  
• Coordination: Children with chronic conditions are often looked after by a variety of health professionals: consultants, therapists and dietitians, not to mention teachers and social workers. Liaison and coordination are very important as differing opinions and advice can be very confusing for the family. Specialist clinics can be helpful, especially when there is a specialist nurse to take on this role as well as offer close support.
  
• Genetic issues: Parents often have questions about genetic implications for other children, and the affected child’s own chances of fertility. A genetics referral may be appropriate.
  
• Support: Chronic illness can be an isolating experience and many families do not have the support of extended family and friends. A referral to social services may be needed for advice about benefits and other services. If there are emotional and behavioural difficulties, referral for counselling may also be required. Self-help and voluntary organizations such as Diabetes UK or Epilepsy Action can be helpful and often run support groups and activities allowing families with similar problems to meet.

Involvement with School

Good liaison with school is important. Staff need to understand about the medical condition so that they can cope competently with problems. Their greatest concern is usually around acute exacerbations, but they may also need to dispense medication or understand dietary restrictions. Asking teachers to report untoward events such as symptoms or drug side-effects can be helpful. A formal health care plan should be prepared to give instructions on the illness, emergency procedures and key contact details.

A child who is underachieving needs extra support. This may include help in making up work lost through absence or providing preferential seating in class. Teachers can be instrumental in helping children cope and integrate socially into school life—particularly important if the family is not coping well. Some children may have special educational requirements that need to be met (Chapter 63).