Chronic illness

Disclaimer: This fact sheet is for education purposes only. Please consult with your doctor or other health professional to make sure this information is right for your child.

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Ten to twenty percent of children have a chronic illness, such as asthma, diabetes, eczema or arthritis.

Like all other children they need to be part of:

  • family life (play, chores and daily activities)
  • social life and relationships with family members, peers and others
  • educational activities
  • leisure activities.

Similarly to other children, their growth and development into happy, well-functioning adults is supported by many factors, including:

  • personal qualities (optimism, coping skills and confidence)
  • family supports
  • community supports (friends, peers, schools and social networks)
  • health and medical supports (medical advice and management, medications, physical, psychological, occupational and other therapies)
  • societal supports (financial benefits and government policies).

For all families, life can become more difficult when experiencing:

  • uncertainty (not knowing what to expect with an illness)
  • changed circumstances (such as moving house)
  • financial hardship
  • child abuse
  • marital conflict and separation
  • adverse life events and losses (including the death of a family member)
  • life-threatening experiences.

In families where a child is affected by chronic illness, there can be additional challenges for the child, the siblings and the parents. While some are general effects of chronic illness, others are unique to the specific condition.

  • developing self-esteem and a healthy body image
  • entering new phases of life (puberty)
  • feeling different, looking different (visible versus invisible condition)
  • prolonged dependence on parental assistance
  • limitations caused by the illness due to fatigue or pain
  • restrictions on everyday activities
  • restrictions on peer relationships (physical limits on involvement; not being understood by friends or peers)
  • difficulties in peer relationships due to changes in the patient's thinking or emotions
  • loss of control over life
  • restrictions on holiday or recreational activities
  • restrictions on parental employment, promotions or recreation (no "time out").

Children can react in different ways to stressful experiences. Their reaction will vary depending on their developmental stage. Some show remarkably little effect, others may have several of the following:

  • behavioural problems (angry, aggressive, withdrawn or risk taking behaviour, poor sleeping or eating pattern)
  • illness and treatment related problems (denial of illness, refusal of medication, changed attitude to illness during adolescence, illness can become the focus of struggle between the young person and the parents)
  • psychological problems (sadness, fear of separation, excessive worries about health, feeling hopeless and powerless, giving up, irrational guilt for causing illness or burden to family)
  • relationship problems (peer problems such as with joining in or being teased, being treated differently and not feeling like one of the crowd, missing school and excursions; conflict with parents because of high dependency, high levels of concern by parents, and lack of understanding about why limits are necessary; conflict with brothers and sisters because of rivalry for parental attention)
  • school and educational difficulties (concentration and learning problems, difficulty keeping up, multiple absences).

Most families manage well, using a variety of coping strategies and benefiting from the assistance of their family, friends and care providers. Good communication between care providers and families is important. Informing care providers about changes in needs or need for help is paramount. Help is available from general practitioners, social workers, community workers, paediatricians or mental health counselors or psychologists.

When young people are old enough, they should be encouraged to become involved in making decisions about their care and in choosing whom they will talk to about psychological issues. Keep in mind that a young person will outgrow their child health service and will require transition to adult services, something that will be discussed with all young people with a chronic illness.

Advice and assistance is available including:

  • home help, home modifications
  • transport support and assistance with parking permit
  • educational and schooling support
  • psychological counselling (individual, marital, family counselling)
  • medical advice and management, pain management
  • financial assistance
  • carer's support, employment support
  • respite care.

For further information or for referral to support agencies call the Association for the Welfare of Child Health (AWCH) on 1800 244 396 or (02) 9633 1988.

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Kids Health (CHW)
The Children's Hospital at Westmead
Tel: (02) 9845 0000
Fax: (02) 9845 3562
www.chw.edu.au
Sydney Children's Hospital, Randwick
Sydney Children's Hospital, Randwick
Tel: (02) 9382 1688
Fax: (02) 9382 1451
www.sch.edu.au
Kaleidoscope, Hunter Children's Health Network
Kaleidoscope Children Young People and Families Network
Tel: (02) 4921 3670
Fax: (02) 4921 3599
www.kaleidoscope.org.au