Caring for a child with a chronic illness is parenting at its most extreme
WHEN THE British prime minister Gordon Brown spoke, following the death of Conservative party leader, David Cameron’s son Ivan, few could have done so with such heartfelt knowing.
The prime minister – who lost one child, Jennifer, 10 days after her birth and went on to have two sons, one of whom suffers from cystic fibrosis – knows first hand of the stress, worries and demands of caring for a child who is chronically ill.
Ivan, the Camerons’ eldest son, suffered from cerebral palsy and Ohtahara syndrome, a rare epileptic syndrome, the combination of which rendered him severely disabled, requiring intensive 24-hour care throughout his life. His condition is understood to have deteriorated suddenly.
Speaking about six year-old Ivan, Brown told MPs in the House of Commons on Wednesday that, “He brought joy to all those around him. Every child is precious and irreplaceable. The death of a child is an unbearable sorrow no parent should have to endure.”
Caring for a child with a chronic illness is parenting at its most extreme. Parents find themselves suddenly thrown into a world of complex medical jargon, constant worry and crisis management. Everyday tasks of washing, dressing and feeding a disabled or chronically-ill child can be difficult enough, added to which parents are dealing with hospital appointments, treatment protocols and often the competing needs of siblings.
But while the challenges are great, so too are the rewards. As David Cameron has implied, Ivan’s disability and chronic illness have helped to shape the man and the politician he has become, making him a fervent supporter of the National Health Service. Ivan’s every physical and medical need had been cared for, bringing the Camerons into contact with a cross strata of society, from fellow parents of chronically-ill children from all social backgrounds, to carers and the vast range of health professionals they relied on to help care for their son.
It is estimated that more than one-tenth of children suffer from chronic illness, with vast differences between the severity and impact of the symptoms.
Advances in science and medical interventions have seen more children and young people than ever living with chronic illnesses that previously would have resulted in early death. This has led to an increase in the responsibility placed on families to administer care at sophisticated levels.
For the role of parent as healthcare provider to be successful the parents must be knowledgeable about their child’s condition. Parents are the experts on their child and they become the experts on their child’s condition.
Treating and caring for chronically-ill children has become a collaborative undertaking with parents and doctors working together to deliver the best health care possible.
Chronic illnesses cause a variety of problems and limitations which vary in their impact on the child and subsequently the whole family. The condition may impede the child intellectually, requiring a specialist school.
There may be physical problems which necessitate adaptations to the family home to provide easier access and mobility. The treatment required to manage the condition may be arduous and lengthy, requiring one or both of the parents to be with the child in hospital for long periods of time. Also the financial burden of chronic illness will have an impact on family, the degree of which depending on their socio-economic position.
These changes affect the whole family and therefore health professionals need to be aware of how integral the child’s illness is to the family unit and how it impacts on all family members.
Families with chronically-ill children are normal families thrown into the turmoil of an abnormal situation. They have everyday family demands, work and childcare issues, worries about their children’s schooling, household chores, relationship or family problems, financial pressures, all of which need to be resolved within the context of caring for a child with physical, medical and emotional needs which demand time and attention.
When a child is diagnosed with a serious illness or chronic condition, the ability of the parent to cope is of paramount importance to the welfare of the child. Medics can provide treatment protocols but success of treatment can often depend on how the parents, as the primary caregivers, implement care for the child.
Caring for a sick child is a whole family experience and how the ill child copes is dependent on how the entire family is supported. Families caring for chronically-ill children can benefit from strategies which enable them to relieve stress, share their responsibilities, gain support and explore their emotional anxieties.
For some people an effective strategy is one which provides them with time out, space to think and process their emotions away from the pressures of home and hospital.
Another parent may need to maintain constant contact with their child but appreciate support with their other children.
Others find empowerment through becoming knowledgeable about the condition and gain a sense of control in understanding the illness. Some seek out support groups and find strength in sharing their anxieties. For some, religion offers the greatest solace and strength.
We are all different and meet the challenges of parenting in different ways.
The parent who recognises a successful strategy for them and employs it to good advantage will cope better and will be a more effective parent.
In recognising the benefits of seeking out information to manage their child’s illness and dealing with the effects of living with a chronic condition families become empowered.
Through gaining a sense of empowerment parents feel more confident and their self-esteem is enhanced. They feel better able to cope and this in turn becomes reality – they do cope.
Sadly, in some instances the family can disintegrate under the pressure of caring for a chronically-ill child. This does not have to be the expected outcome. In most cases the experience of loving and caring for a chronically-ill child can be a positive, life-affirming experience. While no one would wish for their child to be ill, let alone suffer from a debilitating, sometimes life-threatening condition, we can find our relationships and family life to be enriched by the experience.
Sharon Dempsey is the author of a book called Extreme Parenting: Parenting Your Chronically-ill Child, which was published by JKP in March 2008