Children with chronic illnesses still take part in:

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

Many things can affect how a child with a chronic illness grows and develops, including:

• personal qualities - optimism, coping skills and confidence
• support from family
• support from friends, school and the wider community
• medical support, management and therapies
• financial and government support.

All families can face challenges, such as:

• uncertainty about illness and the future
• changed circumstances, like moving house or money problems
• abuse
• family conflict and separation
• grief and loss
• traumatic or life-threatening experiences.

Families of children with chronic illness may face extra challenges. These can affect the child, their siblings, and parents. They may include:

• building healthy self-esteem and body image
• coping with life changes like starting school or going into puberty
• feeling different or looking different
• needing extra support from parents for longer than other children of the same age
• symptoms that affect everyday life, like tiredness or pain
• missing out on social or recreational activities
• difficulties with friendships, or being misunderstood
• emotional or behavioural changes
• having less freedom or feeling of control over life
• not having time for work or self-care.

Children may respond to stress in different ways. Some might show:

• behaviour changes - anger, withdrawal, sleep or eating issues
• issues related to their illness - avoiding medicine or struggling with their diagnosis
• emotional difficulties - worry, sadness, guilt, hopelessness
• relationship problems - missing school or feeling left out, conflict with parents or siblings
• school struggles - trouble concentrating, falling behind, missing classes.

Most families cope well by:

• leaning on support from family, friends and healthcare teams
• having good communication with care providers
• keeping their child’s support and treatment teams informed about changing needs or when help is needed.

Your child may be able to get support such as:

• home help or changes to your home
• transport or parking assistance
• school support
• counselling for your child or family
• medical or pain management
• government financial help
• support for carers, work, or taking a break, like respite care.

Depending on your child’s condition, they may be eligible for support through 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 aims to give families more choice and control over the supports their child receives to be in the community and achieve their goals.

Speak to your child’s treatment team for more information about eligibility for the NDIS.
 

As children grow older, they will start to take more responsibility for their health. They will eventually move from children’s to adults’ services. 

As your child grows into a teenager, encourage them to take part in managing and making decisions about their care, and to speak up about their needs. Talk to your child’s treatment team about how to prepare for this transition.