Chronic illness support

Like other children, children with chronic illnesses are a part of:

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

There are many factors that impact how your child with a chronic illness  grows and develops. These include:

• 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 harder when there is:

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

In families who have a child with a chronic illness, there can be extra challenges for the child, siblings and parents. While some are general effects of chronic illness, others can be  due to the condition itself. Challenges can include:

• developing healthy self-esteem and body image
• entering new phases of life (eg starting school puberty, going into high school)
• feeling different, looking different (visible versus invisible conditions)
• longer dependence on parental support
• limitations caused by the illness due to fatigue or pain
• difficulties with 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 your child’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 react in different ways to stressful experiences. Some children show little effect, while others may have:

• behavioural problems (angry, aggressive, withdrawn or risk taking behaviour, poor sleeping or eating patterns)
• 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 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).

Depending on your child’s chronic illness, you may be able to access the following:

• 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.

Depending on your child’s condition and ongoing needs, they may be eligible to receive supports under the National Disability Insurance Scheme (NDIS). The NDIS supports children with a permanent and significant disability as well as providing early intervention to reduce the impact of disability in the future. It provides you with more choice and control over how your child is supported to participate in the community and achieve their goals.

As your child gets older, they may need to take more responsibility for their health, as they will need to transition (move) to adult services. Encourage young people to become involved in making decisions about their care and in choosing who they will talk to about psychological issues. Becoming involved in their own healthcare and transition can be discussed with the healthcare team.