How easy is it for parents of children with long-term health conditions to make sure treatment plans are followed? Alina Morawska, from the Parenting and Family Support Centre at the University of Queensland explores some of the factors that influence the successful management of chronic conditions and asks what can be done to better support parents?
Can parents and the way they deal with their children’s behaviour actually make kids’ sick? Of course, this is a simplistic question and thankfully we have moved beyond the days of parentectomy(1), when removal of parents was thought to be an appropriate treatment action for chronically ill children. Yet, there is also no doubt that what parents do and how parents and children relate greatly matter to all children.
In population health terms, the question of how we can help families of children with chronic illnesses is an extremely important problem to consider. Childhood chronic health conditions, such as asthma, eczema and diabetes are common, and rates are on the rise around the world(2). It is estimated that up to a quarter of Australian children are diagnosed with long term health conditions, and while most are not life threatening they bring considerable burden for children, families and communities.
Most chronic health conditions require ongoing medical care and management. The burden of this care largely falls on parents. Parents are ultimately responsible for ensuring that children apply their eczema creams, that they take regular blood glucose readings or that they have their asthma reliever with them when they go to school. While some treatment actions are relatively straightforward, others are quite complex and require considerable knowledge and practice to implement correctly – something parents have had little preparation or training for.
The situation is further complicated by the fact that children generally don’t understand the long term benefits of treatment. As most of us have experienced at some point in our lives, treatments can be unpleasant, uncomfortable or painful. Thus, treatment requires the parent to get the child to do something they don’t want to do essentially because their parent asks. This of course mirrors any other parent-child interactions where parent and child goals and motivations differ – cleaning up rooms, completing homework, limits on screen time – however the child’s resistance and refusal to cooperate in the context of illness management is particularly problematic. Parents and children need to be able to communicate well in a positive, supportive and loving context in order effectively and correctly undertake the treatment. Over time, the transfer of responsibility for illness management from parent to child is best done when both parent and child are working together and communicating well. If the parent finds the task of getting their child to take their medication too hard, too stressful and too overwhelming they may simply give up.
Do parents really give up and not persist with their child’s prescribed management plan? We know that non-adherence with treatment and prevention is around 50% and can be as high as 75%(3). Is this just because children refuse to take medication and parents give up? Of course not; there are many reasons for non-adherence, simply forgetting being at the top of the list. But parents do say that their child’s resistance to treatment plays a role in non-adherence(4).
Non-adherence is a well-recognised problem, yet to date interventions to improve adherence, which have largely focused on education, have not been particularly effective(5). It is also the case that the effects of psychosocial parenting and family interventions on outcomes including parenting, mental health, and child illness symptoms have been limited(6). Notably, the majority of studies to date have not targeted parenting practices specifically and those that have, have had mixed outcomes.
So what should we do? How should we help parents?
Our paper(7) outlines the links between parenting and child behaviour and makes recommendations for the development and testing of parenting interventions in the context of childhood chronic health conditions. We also make some suggestions for how parenting intervention might be used to support parents, but of course whether such programs are effective is still largely an open question. We hope that research at our Centre and the work of many others around the world will be able to provide some guidance on what works and what doesn’t in the near future.
The Journal of Child Health Care has kindly made the article, on which this blog is based, open access until 2 May 2015. Please read the full article: Parenting interventions for childhood chronic illness: a review and recommendations for intervention design and delivery.
About the Triple P programme
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.
Contact Alina: firstname.lastname@example.org at the Parenting and Family Support Centre, School of Psychology, University of Queensland
1. Robinson, G., 1972, The story of parentectomy. The Journal of Asthma Research, 9: p. 199-205.
2. Van Cleave, J., Gortmaker, S.L., and Perrin, J.M., 2010, Dynamics of obesity and chronic health conditions among children and youth. JAMA, 303(7): p. 623-30.
3. Morton, R.W., Everard, M.L., and Elphick, H.E., 2014, Adherence in childhood asthma: the elephant in the room. Arch Dis Child, 99(10): p. 949-53.
4. Burgess, S.W., Sly, P.D., Morawska, A., Cooper, D.M., and Devadason, S.G., 2008, Assessing adherence and factors associated with adherence in young children with asthma. Respirology, 13: p. 559–563.
5. Dean, A.J., Walters, J., and Hall, A., 2010, A systematic review of interventions to enhance medication adherence in children and adolescents with chronic illness. Archives of Disease in Childhood, 95(9): p. 717-723.
6. Law, E.F., Fisher, E., Fales, J., Noel, M., and Eccleston, C., 2014, Systematic Review and Meta-Analysis of Parent and Family-Based Interventions for Children and Adolescents With Chronic Medical Conditions. Journal of Pediatric Psychology, 39(8): p. 866-886.
7. Morawska, A., Calam, R., and Fraser, J., 2015, Parenting interventions for childhood chronic illness: A review and recommendations for intervention design and delivery. Journal of Child Health Care 19(1): p. 5-17.