Supporting pupils in mainstream school with an illness or disability: young people’s views

Abstract

To date, little research has focused directly on health-related support in school for children with a chronic illness or physical disability, yet these children are known to be at increased risk for psychosocial and academic problems. In addition, few studies have sought the views of pupils directly: those which have report a wide range of problems with school life. The increasing numbers of children surviving and managing their health conditions, together with UK policy for inclusive education, means that a growing proportion of pupils in mainstream schools require understanding of their special health needs and may need service support from education and health professionals. This paper presents findings from semistructured interviews with 33 mainstream secondary school pupils with a variety of illnesses and disabilities on the impact of their health condition on school life. Results show that young people valued school and were actively managing the effects of their condition, but needed support from others. Informal support was most frequently cited, including parents--particularly mothers--teachers and close friends. The main difficulties were implications of school absence, exclusion from school life, teachers' reactions to the illness or disability, and peer relationships. The discussion focuses on ways in which health professionals can play a part in supporting pupils both directly and indirectly, through helping others in school understand the condition and its impact on school life.

The views of young people with congenital cardiac disease on designing the services for their treatment

“…Other researchers have also found this in their work with chronically ill or disabled young people. 17,26,29 It is important therefore that health professionals give detailed information on what young people can do, so that teachers for example may adapt activities to include, rather than exclude, the young person. 26 …”

“…25 Credibility to the findings of the study was enhanced by comparison with similar results from research into other groups of young people with a chronic illness or disability. [26][27][28] A key limitation to this project was the small sample size. Although "saturation" was achieved in the interviews, with no new themes were being generated by the end of the period of interviews, it does mean there is little opportunity to look at different variables such as age, gender, culture or condition.…”

‘I want support, not comments’: children's perspectives on supports in their life

“…Different kinds of supports are appreciated by students when they allow them to participate in class activities, help them keep up with the rest of the class, or stimulate social participation (Lightfoot, Wright, and Sloper 1999;Hutzler et al 2002;Messiou 2002;Hemmingsson , Borell, and Gustavsson 2003;Curtin and Clarke 2005). Some students mention they do not like to be taken out of the class during fun activities.…”

“…How and when supports get organized is determined by adults with very little influence by children (Skär and Tamm 2001;Hemmingsson et al 2003). Children want to be involved in choices about the type of supports they will get (Lightfoot et al,1999).…”

Educational Difficulties and Support Needs of Children Following Renal Transplantation: Student, Parent and Teacher Perspectives

“…The education of children with chronic medical conditions represents an area that has received limited research attention (Bolton, Closs and Norris,2000;Lightfoot, Wright and Sloper, 1999;Bailey and Barton, 1999), notwithstanding that such conditions affect a considerable proportion of school children, amounting to 10-15% (Eiser, 1993). The focus of existing research has mainly been on issues of psychosocial and behavioural adjustment, as well as on family functioning among children with chronic illnesses (Eiser, 1993;Spirito, DeLawyer and Stark, 1991).…”