When a child’s wellbeing depends on vigilant monitoring and consistent medical attention, the everyday anxiety and stress that all parents deal with is made worse by the fact that failing to keep up with treatment can be a matter of life and death.
Even mild symptoms of chronic illnesses in children can affect regular activities, play and school attendance. On top of this, children with chronic health conditions tend to have more behaviour problems and anxiety. This complicates the problems of illness management, affects the relationship between parents and children and creates yet another source of stress for parents.
These problems affect the whole family, but also extend to the community. Rates of childhood conditions such as asthma, diabetes, eczema and cystic fibrosis are on the rise. Up to a quarter of Australian children are diagnosed with one or more long-term health conditions.
When families struggle to deal with the demands of their child’s illness at home and to stick to a treatment plan, the impacts extend beyond the family circle to a health system grappling to handle increasing costs of care, schools struggling to deal with special needs, and the impacts of stress and depression on parents.
To date, most interventions and treatments for families caring for a child who has a chronic illness have focused on a medical model, using education or family-based educational interventions to improve the likelihood that families will maintain treatment at home.
While this approach is clearly important, it has had limited effects on improving rates of adherence and broader family outcomes such as stress and family relationships.
We do know that a number of strategies can help parents in dealing with behaviour problems in children with chronic illnesses and in improving the relationship between parents and kids.
How can parents help?
Having a child with a chronic illness is stressful for parents, children, and their siblings and unfortunately, higher levels of stress can make the child’s illness worse.
So far, research has found mixed effects for the effectiveness of parenting interventions with asthma and diabetes specifically, but there are promising signs that such interventions can increase parents’ confidence, reduce stress, and improve child behaviour.
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Sticking to a consistent family routine can help to reduce stress. This also means having realistic expectations about what parents and children can accomplish, and finding effective ways to balance work and family. Getting enough rest, healthy food and exercise is also important for everyone.
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Making sure the child’s illness is well managed, and keeping their daily life as normal as possible is vital. Making regular visits to the doctor and other health professionals, collaborating to develop a treatment plan that works for the child and family, and regularly reviewing how their child is faring and whether their management plan is still effective are essential.
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Children sometimes need help recognising when they are feeling stressed. Parents can teach specific strategies such as showing their child how to slow down their breathing and say positive, helpful things to them when they are feeling tense or stressed.
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Talking to children openly and listening to their worries is important. Parents and children often worry about very different things: for example, parents may be most concerned about medical emergencies (like a severe asthma attack), while children are often more worried about appearing different to their peers (coughing during school assembly).
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Talking openly and honestly with siblings about what is happening at a level they can understand shouldn’t be forgotten. Caring for a child with a chronic health condition takes up a lot of parents’ time and energy. Siblings can feel worried, stressed, angry, or left out. Often there is less attention for them, as the family concentrates on the unwell child, and they may feel uninformed or uninvolved in what is happening.
There will be extra challenges
Most parents make allowances for their child’s behaviours and emotional reactions when they are unwell. This is natural – there is little point trying to make a feverish child clean up their room, and a special treat or extra attention can be comforting.
Unfortunately, if the child’s health problem is ongoing, making allowances on a regular basis can mean children miss out on many routine activities and opportunities to learn new skills. Parents can fall into traps of being over-protective, not following through on discipline, and limiting their child’s day-to-day activities and responsibilities.
Instead, parents need to help children feel more “normal” and in control by giving them responsibilities, creating opportunities to take part in regular activities, and encouraging them to be involved in their illness management.
Parents frequently worry about leaving their child in the care of others. Finding good support is essential to reducing parenting stress, and parents need to be confident and comfortable with the child care and school options available to them.
No one is born knowing how to respond to an asthma attack or check a child’s blood glucose level. It’s about talking to and learning from professionals and other caregivers and coming up with a way of life that best suits your family.
Alina Morawska receives funding from the Australian Research Council. The Triple P – Positive Parenting Program is owned by The University of Queensland. The University, through its main technology transfer company, UniQuest Pty Ltd, has licensed Triple P International Pty Ltd to publish and disseminate the program worldwide. Royalties stemming from published Triple P resources are distributed in accordance with the University’s intellectual property policy and flow to the Parenting and Family Support Centre, School of Psychology, Faculty of Health and Behavioural Sciences, and contributory authors. No author has any share or ownership in Triple P International Pty Ltd. Alina Morawska is an author of various Triple P resources.
Amy Mitchell is a staff member of the Parenting and Family Support Centre at The University of Queensland.