Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school. (original) (raw)
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Reported school experiences of young people living with sickle cell disorder in England
A survey of 569 young people with sickle cell disorder (SCD) in England has found such pupils miss considerable periods of time from school, typically in short periods of two or three days. One-in-eight have school absences equating to government defined " persistent absence ". Students with SCD report that they are not helped to catch up these school absences. Half the children reported not being allowed to use the toilet when needed and not being allowed water in class; a third reported being made to take unsuitable exercise and being called lazy when tired. Children perceived both physical environment (temperature, school furniture) and social environment (being upset by teachers or other pupils) as triggers to episodes of their illness. Policy initiatives on school absences; preventive measures to ensure maintenance of good health; and measures to prevent perceived social attitudes precipitating ill-health would also support children with other chronic illnesses at school.
School ethos and variation in health experience of young people with sickle cell disorder at school
Young people with the serious chronic illness, such as sickle cell disorder, report high levels of negative experiences at school that have adverse effects on their health. Disclosure of sickle cell status appears unrelated to improved experiences, and alternative explanations for variable health experiences at school are required. This paper draws on a multi-methods study of young people with sickle cell disorder in England in an attempt to make sense of variable experiences unrelated to disease severity or to teacher/peer awareness of sickle cell. School ethos, the manner in which school-based interactions combine to bring into effect school values, including attitudes expected of young people, attitudes expected of teachers, how young people relate to each other, how young people relate to staff, how the school relates to the community and a holistic concern with the spiritual, moral, cultural and social development of the young person. It is proposed that these interactions and resulting values are a key to understanding variable health experiences of young people with sickle cell disorder at school.
Disability & Society
Sickle cell disorder (SCD) is a chronic illness that in England disproportionately affects marginalized ethnic groups, but has yet to feature extensively within educational or disability research. This review of existing literature makes the case for a sustained developmental research programme around SCD, disability and education. There are potentially life‐saving decisions that could be made by teachers in caring for a child with SCD. The place of the school as a venue for health screening with respect to vision, hearing and dental care is also complicated by SCD. The lack of a formal school policy to address the combined episodic and longer term school absences correlated with SCD clearly disadvantages a group of pupils whose academic potential may already have been curtailed by teacher expectations based on their ethnicity. Both the physical and social milieu of the school could be adapted so that the environmental triggers of severe painful episodes associated with SCD are grea...
Coming of Age With Sickle Cell Disease and the Role of Patient as Teacher
Journal of the National Medical Association, 2010
Patients with chronic conditions are encouraged to optimize their health care experience by educating themselves regarding their condition and care. This study sought to explore the ways in which adolescents and young adults with sickle cell disease (SCD) educate others about their condition and the meanings they give to their experiences with health care professionals. Methods: Seventeen individuals with SCD participated in indepth interviews regarding their experiences as an individual with SCD seeking health care. Results: Our analysis revealed participants' belief in the ignorance concerning SCD by others, including health care professionals. Additionally, the participants suggested significant consequences of such a lack of knowledge and the strategies they used to overcome this barrier-primarily the development of the identity of patient-as-teacher. Conclusion: Sickle cell patients in general and adolescent sickle cell patients in particular are often underestimated and discounted as they relate the details of their pain. This study demonstrates that these participants are not only keepers of knowledge but also must work to educate authority figures and peers in their lives to ensure they are properly cared for and that those around them understand their disease.
Social, emotional and behavioural difficulties: a different kind of special educational need?
Scottish Educational Review, 2004
This paper is written at a time of public and policy concern with the behaviour of pupils in our schools. At this time, despite the dominance of the inclusion agenda, 1 ), along with pupils (Farrell, 2001). This paper is an attempt to understand the differing experiences of pupils with SEBD from those of the majority of other groups of pupils with Special of research to practice in this area. The starting point for this exploration will be a review of the history of research in special education and a consideration of the ways in which SEBD can be seen to differ from other categories of special needs in relation to the kinds of explanations which are considered convincing. paradigm', described by Clark, Dyson and Millward (1998) as featuring real, responded to by a rational special education system set up to meet the needs of pupils many of the theoretical beliefs underpinning the social sciences in general, sometimes in both the wider social sciences and the contemporary political agenda is apparent when characteristics of post 1970's research are examined.
A Psychoeducational Group Intervention for Adolescents Diagnosed with Sickle Cell Disease
Phylon (1960-), 2002
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AIM: understand the social representations of disability in the school context METODOLOGY: purpose-built questionnaire with open answers, consisting of 10 questions, was used. RESULTS: - the operators interviewed undoubtedly framed the disabled student in a non-medicalization perspective, albeit with qualitative differences; - all teachers and all parents have de facto provided representative modalities that are often collusive between themselves; - only the families of students with disabilities can provide significant information on therapeutic opportunities or previous educational experiences that may give relevant results in terms of both behaviour and profit.