A nine-year-old boy recently attended my practice for an assessment of his cognitive and academic skills as he prepared to return to full time schooling after a long period managing chronic illness and a recent splenectomy. As his mum spoke of his current challenges including missed school and his loss of social contact, I watched this young boy slump further down into his seat until a tear trickled down his face. Jack1 missed more than 12 months of school due to his medical condition, had multiple hospitalisations and procedures, and repeated a school grade. In addition, his mum is managing her own mental health and his dad works in a fly-in-fly-out role. Needless to say, an assessment was the last thing Jack needed at this time and when he next attended, it was with a referral from his general practitioner (GP) under a Mental Health Treatment Plan. It was striking to see him write ‘ambulance’ and ‘hospital people’ in his list of important people in his life. While Jack speaks fondly of the most recent ambulance driver who assisted him, he has fallen significantly behind in his academic skills and his self-esteem is extremely low.
Jack’s situation highlights the complexity of the needs of children living with chronic illness. Jack, and other children with chronic illness, are not only managing the physical demands of an illness, but also the flow on effects of missed school, reduced social opportunities and family pressures which can seriously impact their mental health.
While the estimates vary significantly, the current percentage of children and young people in Australia living with chronic illness can range from 10 to 20 per cent of the population. This variation is often attributable to the manner in which disease, illness and conditions are defined. The term chronic condition refers to a broad range of chronic and complex health conditions across the spectrum of illness and includes physical and mental illness, trauma and disability. Chronic illness or chronic physical disease refers to a medical condition that involves periods of hospitalisation, can be diagnosed to professional standards (i.e. International Classification of Diseases), and is expected to last longer than three months or to be incurable (van der Lee et al., 2007).
Some of the most prevalent chronic illnesses among children and young people in Australia include asthma, heart disease, gastrointestinal diseases, diabetes, cancer and epilepsy (see incidence rate p. 11). As more children survive and live with chronic illness, consideration needs to be given to the often intense and longstanding medical treatments, medication regimens, disruptions to academic progress and to the complex psychological and social implications of living with illness.
Psychologists are uniquely placed to provide not only therapeutic support for children and young people living with chronic illness but also to communicate and advocate for them within the health and education systems. One of the most important considerations for understanding and working with children and young people with chronic illnesses is the recognition that illness can ‘threaten the normal trajectory of a child’s development’ (AIHW, 2012). This interruption to development can occur at the physical, cognitive and psychosocial level.
For example, a four-year-old with acute lymphoblastic leukaemia (ALL) who undergoes two years of treatment (six months intensive – 18 months maintenance) misses an array of learning and play opportunities at home and preschool due to hospitalisations. In addition, it is also recognised that treatment itself may lead to neurocognitive impairments which can impact on the child’s ability to learn to read and write when they start school.
“These children and young people are not looking for special privileges. They are seeking support, understanding and empathy; and from their psychologist, they want evidence-based treatment”
Adopting a biopsychosocial approach
Psychological support using a biopsychosocial perspective can be of benefit to children and young people with chronic illness. This perspective acknowledges the physical aspects of illness (treatment regimens, physical restrictions and fatigue etc.), the psychological impact of illness and the risks for mental health concerns (heightened risk of anxiety and depression). Consideration is then given to the child’s day-to-day needs in the context of social connections, coping styles, multiple stressors, family dynamics, school support and advocacy requirements. Maintaining a developmental perspective also allows for the appropriate recognition of challenges and therapeutic treatment approaches to better support the child and their family through their experience. A nine-year-old experiencing ongoing medical treatment and missed school presents very differently to that of a 15-year-old who is also managing puberty and increasing peer pressure. Working within the multiple and complex layers of a child’s life is a skill which psychologists are well trained for.
Across the literature examining the impact of chronic illness it is well recognised that children and young people will generally experience lower levels of academic, physical and social functioning than their healthy peers. They are also up to four times more likely to develop mental health symptoms when compared to otherwise healthy children (Bennett, et al., 2015; Pinquart & Teubert, 2011). A recent meta-analysis found that poorer school experiences and outcomes were consistently linked to greater disease severity, stronger treatment side effects and lower socioeconomic status (Lum et al., 2017). Within the school environment, it has been suggested that providing support for students with chronic illness that is directed towards promoting their psychological adjustment may be more appropriate than providing them with academic or remedial interventions (Layte & McCrory, 2013). Maintaining awareness of these risk factors and potential impacts can guide therapeutic interventions for children and young people with chronic illness.
Treatment programs and research
Children and young people with serious chronic illness are usually well linked in to services through their treating hospitals. Many of these hospitals have specific structures and programs designed to support children with chronic illness. This may include staff roles such as illness specific educators, clinical nurse consultants or education liaison staff. In the field of oncology, for example, the child and family will be supported by a multidisciplinary team (MDT) comprised of oncologists, radiologists, nurses, psychologists and social workers. Children’s hospitals across Australia have comprehensive websites where information on these programs and resources is readily available.
Research programs between hospitals and universities have also developed over the past decade in order to address not just the medical needs of children with illness but also the psychological impacts of chronic illness. This has included programs for not only the child but also those caring for them including parents, siblings, teachers and extended family members. Many psychologists are involved in these research programs through hospital and university collaborations, undertaking the development of resources, clinical trials and the delivery of intervention programs such as at the Kids Cancer Centre at Sydney Children’s Hospital. Over the past decade there has been an increased focus on the specific needs of adolescents and young adults (AYAs) through the development of AYA teams, research programs and collaborations between paediatric and adult treating hospitals (see Sansom-Daly et al., 2012). Psychologists who are working with young people are encouraged to liaise with these programs and professionals for the benefit of the child and the whole family.
Managing fears and uncertainties
Through my research and experience with children, adolescents, parents and teachers, there has been a theme of the ‘fear of the unknown’ in the professionals children need most. A teacher may question whether a child who is still undergoing cancer treatment should even be at school and encouraged to do classwork. A classmate may wonder whether they can ‘catch’ their friend’s disease. A school counsellor might question whether a child with chronic illness can access exam accommodations. When does a school need to contact parents or call an ambulance? Other uncertainties may include questions such as: “What would I do if a child becomes unwell midway through psychological therapy?” and “Can I raise the topic of death?”. All of these questions, fears and challenges can be addressed with an informed approach; communication with the young person, parents, medical professionals and teachers and active exploration of disease specific information that is increasingly available on websites. Psychologists are well placed to communicate with multidisciplinary teams at hospitals, general practitioners and with key school personnel including school psychologists/counsellors. For psychologists working in or with schools it can be beneficial to expand a learning support plan to incorporate health factors both pertaining to the student’s illness and also to their mental health and social opportunities. These children and young people are not looking for special privileges. They are seeking support, understanding and empathy; and from their psychologist, they want evidence-based treatment.
Medicare outlines specific support that is available for the management of chronic diseases. This includes a GP Management Plan (GPMP) which can help people with chronic medical conditions by providing an organised approach to care. GPs may also develop Team Care Arrangements (TCAs) to help coordinate more effectively the care required from the GP and other health or care providers. If there are mental health concerns evident in a child or young person with chronic illness they may also be referred for psychological services under Better Access to Mental Health Care.
The following are practical strategies psychologists can undertake when working directly with children and young people with chronic illness:
- Maintain up-to-date first aid skills
- Be informed about the illness – comprehensive website information exists for most illnesses
- Explore additional support groups (e.g., CanTeen, ChiPs, Camp Quality)
- Be prepared to write letters of support such as requesting extra time in exams for students due to the fatigue effects of illness
- Regularly check in with parental mental health
- Provide motivational and coping support and strategies
- Use evidence-based treatments for presentations of anxiety and depression
- Be alert to additional needs that may arise such as mobility issues, time of the day for appointments, the need for occupational therapy
- Maintain an awareness of your own health. A head cold may be a nuisance for you, but it can be serious if passed on to a child with a compromised immune system.
When working with children and young people affected by chronic illness it is often also about letting them know that you understand that it’s tough, that having mixed feelings about the situation makes sense, that yes, of course they are scared when their brother goes back to hospital, that it makes sense that they struggle with school work after long stays in hospital, and most of all recognising their strengths and their resilience. These children are some of the bravest, most amazing young people I have ever had the privilege of working with and the same can absolutely be said for their brothers and sisters, parents and carers. For many of these children and young people their experiences of illness will be a lifelong challenge so equipping them with skills and support from a young age can only be of benefit. As a parent recently said to me, “the ripple effect of illness is chronic in itself”, so perhaps as psychologists we can aim to smooth those waters.
Useful websites
rmhc.org.au - The Ronald McDonald Learning Program helps children with serious illness catch up on missed education.
raisingchildren.net.au - Peer support groups for children and young people with chronic illness.
missingschool.org.au - Resources and advocacy for children with chronic illness.
The author can be contacted at [email protected]