Many children (10-20%) have a chronic illness, such as asthma, diabetes, cystic fibrosis, 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.
Like all other children, there are many factors that impact how a child 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 you experience:
-
uncertainty (not knowing what to expect with illnesses),
-
changed circumstances (such as moving house), money problems,
-
child abuse,
-
marital conflict and separation, or 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 are due to the specific conditions.
Challenges can include;
-
developing self-esteem and a healthy body image.
-
entering new phases of life (puberty), starting school, going into high school.
-
feeling different, looking different (visible versus invisible condition), depression.
-
longer dependence on parental support.
-
limitations caused by the illness due to fatigue or pain.
-
challenges 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 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 react in different ways to stressful experiences. Some children show little effect, others may have several of the following.
-
Behavioural problems (angry, aggressive, withdrawn or risk taking behaviour, poor sleeping or eating patterns).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 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 range of coping strategies.
-
Families benefit from the support of their family, friends and care providers.
-
Good communication between care providers and families is important.
-
Keeping care providers up to date about changes in needs or the need for help is really important.
-
Help is available from general practitioners, social workers, community workers, paediatricians, mental health counsellors, specialist nurses (CNC’s) or psychologists.
As children get older, they will need to take more responsibility for their health as they will need to transition to adult services at some point. So 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 should be discussed with the healthcare team.
Help and support is available depending on which chronic illness your child has. 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 support 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.
In order to check your child’s eligibility, please visit www.ndis.gov.au or make contact NDIS on 1800 800 110.
Remember:
For further information or for referral to support agencies call the Association for the Welfare of Child Health (AWCH) on 9817 2439 or visit www.awch.com.au
