An evaluation of the educational support for teachers who teach children with life limiting illness in mainstream schools

There are increasing numbers of children living with life limiting illnesses in mainstream schools, thanks to better medical care. Life limiting illnesses in children can include (i) conditions for which curative treatment is feasible but can fail such as cancer and irreversible organ failure (ii) conditions requiring long periods of intensive treatment, but premature death is still possible such as cystic fibrosis (iii) progressive conditions without curative treatment such as Battens disease and (iv) conditions with severe neurological disability which might deteriorate unpredictably such as those with severe multiple disabilities following brain or spinal cord injuries (ACT/RCPCH, 2003). The aim of this literature-based study was to evaluate the current provision of educational support for teachers who are teaching children with life limiting illness in mainstream schools. An international literature search was carried out between February and July 2010 for academic journal articles across nine electronic data bases. It produced 23 papers published between 2005 and July 2010.
The review aimed to answer the following questions:
• What are the needs of children who have life limiting illness, and their families, when the child is in school?
• What are the needs of teachers who are teaching children with life limiting illness?
• What educational support is currently available for teachers who are teaching children with life limiting illness?
• How well does the educational support meet the needs identified within the context of the literature reviewed?
The analysis identified that the needs of children with life limiting illnesses are not being well met, and there appears to be little evidence of educational support for teachers. The paper concludes that schools need to work with both the medical and social models of health/disability in order to meet the needs of children with life-limiting illness. There is some consensus that the way forward needs to include multidisciplinary working within an ecological approach that supports home, schools and the health services working together. Only one paper reported an evaluation of such an intervention. There is a need for more research, evaluation and dissemination about the experience of living with a life-limiting illness in mainstream schools and related interventions, and for this to inform professional education and the co-ordination of education, health and home systems.