Paediatrics: Adolescence and chronic illness

Adolescence and chronic illness

A chronic illness is defined as a condition lasting at least 6mths. The num-ber of young children surviving into young adulthood with a congenital or chronic health problem is increasing. In addition, the prevalence of certain chronic lifelong conditions (e.g. type 1 diabetes) is increasing. It is estimated that 20–30% of young people may have a chronic illness.

Impact on the adolescent

Teenagers with a chronic illness are disadvantaged compared with their healthy peers. Their illness can impact on physical, psychological, emo-tional, and social development and well-being:

Consequences of chronic illness on adolescent development

Physical

Constitutional delay in growth and pubertal development. 

Psychological

•   Poor self-esteem.

•   –ve body self-image.

•   Sense of alienation.

•   Depression.

•   Anxiety.

•   Behavioural problems.

Social and educational

•   Poor school performance.

•   Social isolation/integration.

Impact on the family

Chronic illness can adversely impact on the adolescent’s family. Parents have to provide additional time for care and support of the teenager with a chronic illness, often with financial consequences. Parents may experi-ence guilt, frustration, and anxiety, and the frequency of mental health problems is increased. Siblings are also disadvantaged, often missing out on parental time and attention. The support of specific agencies and child and adolescent psychology services is often required and may be helpful.

Impact on health professional relationships

Young people are usually more concerned about the ‘here and now’ issues of adolescence, and less interested in the long-term consequences of their treatment and their behaviour towards it. This often leads to a conflict of priorities between health professionals (and parents) and the adolescent, and may lead to problems with compliance. Improving compliance may be helped by the following:

Treatment discussions

• Should be developmentally and cognitively appropriate.

• Should be alone and in confidence.

• Adopt a non-judgemental approach.

• Explore understanding of illness and treatment. Correct any misunderstanding and educate.

• Identify potential barriers to adherence.

• Avoid medical jargon.

• Encourage treatment ‘routine’.

Treatment goals

• Should be relevant to (current) adolescent issues, e.g. appearance, socializing, recreational opportunities.

• Include the adolescent in negotiations.

• Keep goals short-term (weeks–months).

• Use simplest regimen possible.

• Tailor to the adolescent’s daily routine.

Treatment application

• Give written instructions.

• Suggest simple reminder strategies, e.g. ‘stickies’, calendar.

• Enlist support and help from parents, family, peers.

Transition to adult health services

Adolescents requiring ongoing specialist hospital care will eventually need transfer to ‘adult’ health care services. This transition requires more than a ‘simple’ transfer of medical records from one service to another. There are many different models of transition of care (e.g. direct paediatric to adult service or indirect via an intermediary ‘adolescent’ or young adult service). Transition should be carefully planned and the adolescent pa-tient, and their family, should be given plenty of time to consider and prepare. Transition should not take place at a fixed, predetermined age, but rather at a point when the adolescent is ready and has the necessary coping skills to deal with the adult clinic. Personalized transition plans are needed for each patient and careful communication, co-ordination, and organization are required between the paediatric and adult teams.