ABOUT 10-20% of children have a chronic medical condition, the most common being respiratory and skin disorders. Research over the past 30 years has identified common themes in the lives of families with an ill child; these themes relate to adjustment and family functioning and are independent of diagnosis.

Advances in medical and surgical treatments have increased life expectancies in some conditions (such as cystic fibrosis and some forms of cancer), changing previously terminal diseases into chronic illnesses.

However, little is known about the impact on families where parents face the loss of a child and subsequently need to adapt to a chronically ill child who may have a limited life expectancy.

The child with chronic illness

Children with chronic illness have twice the risk of psychosocial maladjustment including learning difficulties, behavioural problems, and peer and social difficulties.

Those with CNS disease have a four-fold increase in risk. Risk of poor psychosocial outcomes is higher in boys and is also related to severity and visibility of the illness, family adaptation and resources.

Adaptation to chronic illness is an ongoing process in both the child and the family. The capacity to understand and manage a chronic condition changes as the child develops, and the illness itself may impact on developmental processes, such as cognitive and psychological functioning. The child's adaptation to illness is influenced by the family's approach and the parents' ability to allow the child to take increasing responsibility for managing their own illness at a developmentally appropriate rate.

Various factors are involved in adaptation to illness. Risk factors for poor adaptation include illnesses that limit functional independence, are severe, have a poor prognosis, are highly visible, or require daily treatment. Protective factors include good individual and family stress tolerance, and overall family functioning.

Data reported by children and parents have been used extensively to examine health-related quality of life (HRQOL) outcomes in childhood chronic disease.

In childhood cancer, HRQOL research finds low levels of distress and good adjustment in children undergoing treatment. Children's adjustment appears to be related to their 'adaptive style'.

Those who maintain a positive attitude rather than express emotional distress show resilience, low levels of depression and fewer trauma-related symptoms -- both psychological and somatic.

Nonetheless, although overall survival is now about 75%, there is increasing recognition that longer-term side-effects of treatment have an impact on survivors.

About 60% of childhood cancer survivors have either physical or psychosocial difficulties after completing treatment. Anxiety concerning possible relapse, depression and post-traumatic symptoms may be persistent and affect the child's social functioning, academic performance and illness management.

This is a particular issue in adolescence when the young person experiences conflict between the demands of medical monitoring and treatment and the developmental need for independence and autonomy.

Depression and suicidal ideation are also associated with ongoing physical symptoms and disabilities.

Family adaptation

For the family, diagnosis of a serious chronic illness or life-threatening condition in a child represents an acute crisis.

Studies consistently find high rates of post-traumatic stress disorder (PTSD) in paediatric patients and their parents, with parents often being more symptomatic than their children. After an accident or diagnosis of diabetes or cancer in a child, between 11.1% and 44.4% of parents fulfil diagnostic criteria for PTSD, with the highest rates in parents of children diagnosed with cancer.

In contrast, up to 14.6% of children themselves will fall in the clinical range for PTSD and tend to have more severe symptoms after accidents.

Parents can be traumatised indirectly by feelings of guilt or directly by being a witness to a child's traumatic experiences.

PTSD symptom severity in parents of children who have had an organ transplant is related to a greater perceived impact of the transplant on family and social function and to lower perceived family benefits of the transplant. Symptom severity is also increased by parental perception of poorer general health of the child and by negative attitudes about health care services and health care in general.

PTSD in adults is more likely when there is additional stress such as other life events. Depression can also occur. In mothers this is increased by alcohol and substance abuse, but ameliorated by use of humour, acceptance of the child's illness, positive reframing, emotional support and religious involvement.

Family functioning is increasingly recognised as important in children's adjustment to illness, although there has been little research on the effects on the family of having a child with a chronic illness.

Family functioning is complex and the impact of illness-related issues may differ across children's developmental periods. For example, conditions that deteriorate over time, such as cystic fibrosis, are likely to have a different impact on family adjustment than those with a stable chronic course.

One way in which psycho-social variables may impact on physical health outcomes is through poor treatment compliance. Well recognised in the field of diabetes treatment, this issue has also been examined in relation to paediatric transplantation, showing a link between parent stress, dysfunctional parent-child interactions, child behaviour problems and poor medication compliance.

Siblings of children with chronic or life-threatening illnesses are at risk of anxiety and depression, and may have difficulties in peer relationships.

PTSD, poor school performance and behaviour problems have been identified in siblings of children undergoing bone marrow transplantation. These problems appear to be related to how severely the ill child's daily functioning is impaired, reflecting the impact of a child's chronic illness on the family. Sometimes, however, sibling relationships can be enhanced in the face of disability.

Helping families to address relationship issues, especially the parents' relationship with each other, and focusing on the relationships of all children in the family, improves long-term adaptation.

Interventions and prevention

GPs are in a unique position to identify problems as they develop in families who have a child with a chronic and complex medical condition. Often having been involved in the child's care from before the illness, GPs are a trusted source of information and support for families.

Many of these children require treatment in specialised, tertiary hospital settings. They often receive comprehensive services from the hospital, but GPs maintain an important co-ordinating and support role. This is especially true for families who live far from the hospital.

An important role of primary health care is the screening and identification of complicating factors for these children and their families, especially when mental health problems develop. GPs can assess family members for psychological problems, particularly PTSD, depression and anxiety.

Siblings' symptoms that may not be readily noticed, such as withdrawn behaviour, may indicate severe depression or anxiety. Attention to risk factors (see box, below) will help to identify families who are most likely to develop mental health problems in the context of chronic illness in a child.

Early treatment for mental health problems that develop in parents will reduce morbidity. Attention to family relationship problems and early referral for relationship counselling are important preventive tools.

It is important to assess parents and children separately because there is evidence that this will yield different information. This is in line with the practice parameters for the assessment and treatment of PTSD developed by the American Academy of Child and Adolescent Psychiatry and with usual child and adolescent mental health practices. It can be difficult to diagnose depression in children who are medically ill because some symptoms suggestive of depression can be symptomatic of the underlying medical condition.

There is evidence for the effectiveness of active support and monitoring in the management of children and adolescents with mild depression in primary care settings. However, in moderate or severe depression, or where there are complicating factors, consultation with a mental health specialist should be considered.

As adolescence progresses, further complications can arise. Lack of adherence to treatment commonly arises during the teenage years, and this can result in complications and increased morbidity.

The GP can help in identifying and managing this problem. Transition to adult care from the paediatric setting represents an additional stress for adolescents. Co-ordinated planning for this transition is called for to improve health outcomes and to assist young people with chronic health problems to attain their potential. The role of the primary health care provider in this process is one of co-ordination, to ensure that young people continue to access specialty care as well as to address their ongoing health and psychosocial issues.

RISK FACTORS

RISK factors for families developing mental health problems in the context of a child’s chronic illness:

* Isolation — lack of family or other social supports.

* Parental mental illness or abuse of drugs or alcohol.

* Living far from treatment centres.

* Additional psychosocial stressors such as unemployment or poverty.

SUMMARY

€ Advances in the treatment of life-threatening chronic and complex diseases have improved long-term survival of children and adolescents.

€ Children who have a chronic illness are at risk of psychological problems, including depression, anxiety, behaviour problems and PTSD.

€ Families of these children also show higher rates of mental health and relationship problems, particularly depression and PTSD.

€ Parents may be significantly affected by the burden of caring for an ill child and the disruption to family functioning and partner relationships.

€ Family problems are associated with poor treatment adherence and subsequent poor health outcomes.

€ Families of ill children require continuity of care and opportunities to communicate and discuss their views and concerns about treatment and monitoring of the condition.

€ Encouraging parents to protect their own relationship and those of other children is important in long-term adaptation.

€ GPs and other primary health care providers play a crucial role in identifying depression and other mental health problems in the parents and siblings of chronically ill children. They are able to provide supportive assistance and appropriate referral to mental health and relationship counselling services.

€ GPs have an essential co-ordinating role in the transition period from paediatric to adult care, to ensure continuing optimal health care for these complex problems.

Useful web sites

* Reachout (information for young people who have PTSD): www.reachout.com.au/default.asp?ti=2237

* Information on PTSD: www.acpmh.unimelb.edu.au/

* Livewire (social networking site for children and young people with chronic illness or disability): www.livewire.org.au

Dr Bowden is head of medical programs and director of training, child and adolescent psychiatry, NSW Institute of Psychiatry; senior staff specialist child and adolescent psychiatrist, Children’s Hospital at Westmead; clinical lecturer, departments of psychological medicine and child health, Western Clinical School, University of Sydney.

Professor Newman is professor of developmental psychiatry, Monash University, Victoria.

References available on request.