Teaching pupils with life-limiting illnesses
Teachers are dealing with increasing numbers of children with life-limiting illnesses in mainstream classrooms, new research has found.
Improvements in medical knowledge and technology, along with the survival of many low-weight babies, has meant that more and more children are living with life-limiting illnesses, say Dr Sally Robinson and Kathryn Summers of Canterbury Christ Church University.
For example, advances in antiretroviral therapy mean that children with HIV are living longer and healthier lives than before. Similarly, most children with cystic fibrosis and cancer can now expect to survive into adulthood.
"Sick children spend less time in hospitals and more time receiving treatment and recovering at home," the academics write.
They conducted a review of more than 100 papers, all published after 2005, dealing with the education of such children in mainstream schools. Their findings were presented at the annual British Educational Research Association conference, held this September in Manchester.
Schoolchildren with life-limiting illnesses are likely to have a range of physical impediments to their learning, the academics explain. For example, pupils undergoing cancer treatment could experience a loss of appetite, constipation and an increased vulnerability to infections.
Several childhood cancers can lead to hearing loss, cataracts, osteoporosis, impaired growth, and oral and dental malformations.
Meanwhile, treatment for acute lymphoblastic leukaemia can cause nausea, vomiting, fatigue, emotional and behavioural problems, and long-term intellectual impairment.
And children who have survived brain tumours can suffer an overall decline in intellectual ability and academic achievement. This appears to be linked to a slowing down of information processing, impaired memory and difficulty sustaining attention.
Fatigue is also a significant consequence of childhood illness and its treatment. Children undergoing chemotherapy explain that fatigue affects their ability to think and to remember.
"It seriously affected their ability to learn and keep up with their peers," the academics say. "This had negative effects on their self-concept and self-confidence."
Inevitably, children being treated for serious illnesses will need to be absent from school. The average length of absence for those treated for brain tumours was 3.8 months. Hospital appointments took up an average of five days a year, but could require as much as 66 days a year.
Many pupils spoke of these periods away from school as being particularly stressful. Extended absence can mean missing essential lessons, and a study of children with brain tumours found that many struggled with literacy and numeracy.
Meanwhile, for pupils undergoing chemotherapy, changes to their appearance - including hair loss and weight gain or loss - often meant that they became self-conscious. In one study, children who wore head coverings reported that they were bullied and abused by peers and also by adults who mistook them for skinheads.
"Changes or differences in appearance directly threaten children and young people's self-esteem, self-belief and confidence, which in turn affects their confidence to form relationships and to be socially accepted," the researchers say.
HIV-positive children also reported that they were reluctant to disclose their status, because they anticipated - or had experience of - losing friends as a result. "Children coping with a life-limiting illness tend to have smaller social networks, less peer support ... and can consequently be quite lonely," the academics say.
This can be particularly true in the later years of secondary school, when illness can interfere with students' plans for adulthood. While other teenagers are living increasingly independent lives, those with long-term illnesses are often forced to relinquish their own plans, and to watch their friends progress without them.
"Children with life-limiting illnesses are physically, emotionally, mentally and socially vulnerable," the researchers write. "The well-informed teacher is best-placed to consider how the school environment and systems can become sufficiently flexible to accommodate the children's needs."
HOW YOU CAN HELP
Teachers and school nurses should work together to ensure that the needs of pupils suffering from life-limiting illnesses are met, new research urges.
Academics from Canterbury Christ Church University conducted a review of research examining the education of children with life-limiting illnesses.
They found that teachers were often unaware of the full implications of such illnesses. For example, teachers need to be informed of the potential risk that infection could pose to already-ill children.
"Teachers need to be prepared to tailor a child's education according to their cognitive, social and emotional developmental stage, all of which can be affected by illness, absence or medical treatment," the researchers say.
They offer a range of suggestions. Some parents recommend that children keep diaries as a way of informing teachers of hospital visits and treatments.
Returning to school after medical treatment is easier for the child if the classroom teacher has kept in touch with the family or with any hospital teachers for the duration of the treatment.
Because normal social activities are essential for sick children, teachers need to help other pupils to understand the illness and its effects. This will help ill children to reintegrate after a period of absence.
The academics also talk about an "ecological approach". This, they say, "emphasises that the child with life-limiting illness affects the environment, and the environment affects the child".
This approach stresses the importance of liaison between medical and educational professionals. The school provides an "advocate" for the child, who serves as a source of information and support for teachers. This could be a school nurse or psychologist who then works with specialist outreach nurses to provide the relevant information within school. Specialist nurses can also train teaching assistants to cope with children's specific needs.
Face-to-face and telephone contact between school, family and children is vital. And teachers should be prepared to offer tailored educational programmes, which take into account the academic, psychological and social needs of pupils. This requires time, effort and commitment.
"More individual teachers need to proactively ask for information and support from parents, healthcare providers, health charities, credible internet sites, teacher-education providers and teacher resources," the researchers say.
Robinson, S. and Summers, K. "An Evaluation of the Educational Support for Teachers who Teach Children with Life-Limiting Illness in Schools" (2012). Pastoral Care in Education, 30 (3), 191-207
Dr Sally Robinson, Canterbury Christ Church University
Kathryn Summers, Canterbury Christ Church University