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Positive interventions for children with chronic illness: parents' and teachers' concerns and recommendations.

Schools today are faced with increasing numbers of students with chronic illness. Medical advances, which improve health and prolong life, and increased incidence levels among some illnesses have led to this increase. Children with a chronic illness are more likely to encounter academic, social and emotional difficulties. The challenge facing educators and families is to ensure that these children receive and maintain a quality education. Understanding the complex issues surrounding the delivery of educational services for this body of students enables more insightful programming and planning to ensure that these students have equal access to the same educational outcomes as other students. Five hundred (25 per cent) Department of Education and Training schools across New South Wales were randomly selected to participate in a study examining parents' and teachers' perceptions of educational services for students with chronic illness: 232 teachers and parents responded with completed surveys. This paper examines both concerns and recommendations, and considers how these issues can be tackled.

Introduction

Students with chronic illness

Inclusive practices in education in New South Wales schools has seen a dramatic shift in the manner in which educational services are provided for an increasingly diverse range of students with individual educational requirements. Students with chronic illness form an inseparable and unique part of this school community. Although as individuals they share many common needs with their healthy peers, they also have specific and individual requirements that must be met to ensure they have equal access to the same educational outcomes, both academically and socially, as their healthy peers.

The number of children with chronic illness attending our schools has increased significantly in recent years (Gortmaker & Sappenfield, 1984; Newacheck & Stoddard, 1994). Medical advances which increase child survival rates for conditions previously considered life threatening and advances in medical treatments and technology permit many children with chronic conditions to live longer. Consequently increasing numbers of children with chronic illness now attend our local schools.

Although technology and treatments can prolong life, many students with severe chronic illness must live a dramatically altered lifestyle from that of their peers and family. The medications, treatments, special diets and physical changes they face are constant reminders of their separateness from their peers at critical stages in their social and emotional development. The resulting absenteeism from repeated hospitalisations, frequent outpatient visits, and extended home stays disrupt schooling and learning (Fowler, Johnson, & Atkinson, 1985) as well as unsettling contact with peers. Compounding these challenges, some students may display changes in behaviour and learning, as a consequence of their treatment, that impact on academic performance (Bender, 1995; Black & Hyrd, 1995) and relationships. In this context, the school setting can quickly become a place of failure, both academically and socially.

Minimal research on the impact of chronic illness on education is available and, in New South Wales schools, almost nonexistent. The delivery of services to students with chronic illness in most Australian schools differs significantly from many schools in the northern hemisphere where, in many cases, school nurses provide medical support. The purpose of this study is, therefore, to gain an understanding of the needs of teachers, parents and students with chronic illness, and provide recommendations for appropriate forms of support to ensure they have equitable access to educational services, both academic and social.

Definition of chronic illness

For the purposes of this study, a chronic illness is 'a condition which lasts for a considerable period of time or has sequela which persists for a substantial period and/or persists for more than three months in a year or necessitates a period of continuous hospitalisations for more than a month' (Thompson & Gustafson, 1996, p. 4).

Impact of chronic illness

Prevalence

Prevalence estimates of chronic conditions in childhood vary widely ranging from less than 3 per cent to more than 30 per cent of the pediatric population (Newacheck & Taylor, 1992). In a large North American study, 2 per cent of the total child population had a severe chronic illness and a further 3 per cent had multiple chronic illnesses (Newacheck & Stoddard, 1994). In the Sydney region, this means approximately 17 000 children between the ages of 4 and 17 have a severe chronic illness, and a further 25 000 children have multiple chronic illnesses. We presume the majority of these students attend their local school.

Impact on the educational experience

Chronic illness impacts significantly on many areas of the educational experience. School attendance is problematic as students with chronic illness miss more school than their healthy peers, are likely to have up to 50 per cent more absences from school than other children, and underachieve academically (Shiu, 2001). Students with chronic illness are vulnerable for absenteeism not only because of the medical aspects of the chronic illness but also because of the secondary effects of the illness on family functioning and the child's self-concept. Several investigators have even concluded that excessive absenteeism may be an indicator of social maladjustment or an early indicator of depression (Bloch, 1986; Knafl, Breitmayer, Gallo, & Zoeller, 1996;Weitzman, 1986).

School attendance is desirable for two basic reasons. First, it equips the student with the educational skills necessary for successful transition into the adult work force, and secondly it provides opportunities for students to develop self-esteem in relation to peers and other individuals through socialisation. The school provides the setting for the successes and failures, and social relationships that will strongly influence their development of a sense of self, connectedness to others, self-esteem, and their perceptions of their ability to perform and cope effectively.

School attendance and absenteeism is not always the result of an inability to attend school due to the physical complications of illness. Cairns, Lansky, & Klopovich (1979) noted that absenteeism was a common problem for children returning to school with cancer, and a significant proportion of the children they studied were school phobic--refusing to attend school because of separation anxiety, fears and related concerns (Klopovich, Vats, Butterfield, Cairns, & Lansky, 1981). Having a chronic illness and being frequently hospitalised is associated with being a less-preferred playmate (Graetz & Shute, 1995) and, in some cases, being discriminated against by peers and educators (Waters, 1990) and requiring support in dealing with the ethical issues of privacy and discrimination. Consequently the roles of teachers and counsellors and the support of fellow students are at least as important, and maybe even more important, determinants of whether a school-age patient will continue with school than the patient's state of health and the effects of treatment (Feldman, 1980).

School attendance for the child who has developed a chronic health condition may be as critical for social-emotional survival as medical treatment is for the physical survival (Sexson & Madan-Swain, 1995).The school may represent the only place where the chronically ill student can be viewed as a child and student rather than a patient.

Chronic illness in the school environment

Due to the relatively low incidence rates for a wide range of illnesses, it is unlikely for a teacher to have had a child with the same chronic illness in their care previously, with the exception of some very common illnesses such as asthma. Consequently they are faced with unfamiliar problems which few of their colleagues will have faced or understand, and it can prove to be quite a stressful experience. Teachers are better able to deal with the situation if they have adequate information and support (Tuffrey, Muir, Coad, & Walker, 1993). Several studies (Sexson & Madan-Swain, 1995;Tuffrey et al., 1993) have identified that, in many cases, teachers feel they are given inadequate information from parents and medical services. They require information that focuses not only on the illness, prognosis, and treatments, but also on the likelihood, warning signs and management of medical emergencies, and behavioural and psychological problems the child may experience as a result of medications, treatments and the illness. Teachers may experience shock, worry, uncertainty and frustration when they are confronted with a newly diagnosed illness for a student in their care, and feel overwhelmed and unsure how to manage or approach the student (Larcombe & Charlton 1996; Sexson & Madan-Swain, 1995).

School attendance problems may go unrecognised or unidentified as teachers assume that absences are related to illness and treatment regimens, thus compromising successful school reintegration. School re-entry may be delayed or restricted because of the inability of the school to provide necessary daffy health care services, effective emergency procedures, and efficient and dependable medication administration (Sexson & Madan-Swain, 1995). Tuffrey et al. (1993) identified the failure of many schools to implement systems for ongoing access to information on the medical management of students for teachers not directly involved with the student at the time of identification and treatment of the illness, or those working with the student in following years. They highlighted the need for a system whereby new teachers can easily gain access to up-to-date information about students with chronic illness throughout their school career.

Frequently teachers are unaware of a student's health condition. Fowler et al. (1985) found that one in five teachers was unaware of a student's health condition prior to being asked to participate in the study Lynch, Lewis, and Murphy (1992) also identified a lack of awareness of chronic illness at both the district administration and school level as a barrier to the provision of appropriate educational services.

Managing medical emergencies at school

A study by British researchers, Eiser and Town (1987), identified the greatest concern of educators working with chronically ill students to be centred on dealing with a medical emergency. Teachers indicated they lacked specific knowledge in implementing emergency procedures for an individual student, and were inadequately trained in recognising a medical alert. General first aid training does not appear to prepare teachers for coping with individual student needs.

Significance of the present study

Schools in New South Wales differ significantly from those in North America, Japan, and the United Kingdom. Unlike these countries, where much of the responsibility for the everyday management of the child's illness falls within the jurisdiction of trained health professionals including school nurses, no such provisions are provided to students and schools here. Despite the importance of schooling and the desirability of attendance for chronically ill students by parents, pediatricians and educators alike, little attempt has been made to determine the extent to which schools are informed and positive in their approach to the inclusion of chronically ill children. Presently there is no research documenting the issues that New South Wales schools and families face daily as they strive to include students with diverse medical conditions.

The limited amount of research documenting the educational experience of students with chronic illness and their parents and teachers is paralleled by the limited attention directed towards determining present practice in the delivery of services to students with chronic illness. The primary benefit of this study is, therefore, to give direction to parents, educators and policy makers wishing to understand and deal with the concerns of teachers and parents in the education of students with chronic illness.

Methodology

Sample

A stratified random sample of 500 or 25 per cent of Department of Education and Training schools was selected to participate in the study. Schools were stratified by district. There are 40 government school districts in New South Wales. A random selection of 12 schools was made from each district. An additional school was then randomly selected from each of 20 districts (10 country and 10 city) to make the total of 500 schools. Participating schools included infants (K-2), primary (K-6), secondary, special, senior colleges, and central schools, covering the K-12 range. Each school received a package with an introductory letter to the principal, and a packaged copy of the parent and the teacher surveys to be distributed by the principal.

Of the 500 schools contacted, 121 parents and 112 teachers returned completed surveys; 65 schools completed both parent and teacher surveys. An additional 61 schools indicated they had no students with chronic illness attending their schools. A total of 229 schools returned either a nil return, one, or both of the surveys (an overall participation rate for schools of 45 per cent). Rate of return was affected by the distribution process, whereby the survey packages were initially directed to principals for participation approval. They then identified a student with chronic illness in accordance with selection guidelines, and forwarded the survey packages to the student's parent/s and teacher or head teacher. The parent and teacher then made the individual decision as to whether or not they would participate in the study. Consequently the overall participation rate for schools of 45 per cent and the response rate for parents and teachers of 23 per cent were satisfactory under the circumstances.

The principal selected students according to a definition of chronic illness and examples of chronic illness as outlined in an introductory letter to principals. No professional confirmation of the diagnosis was sought. Parents and teachers indicated their child's illness in the survey. These illnesses were validated as chronic illnesses and categorised for analysis by a pediatrician. Mental health conditions were not included in this study. Surveys were returned in a prepaid envelope, addressed to the researcher, which was enclosed with the questionnaire. This allowed for anonymity in response and removed any pressure for participation.

Instruments for data collection

Review of literature in the area of chronic illness was used to develop the two survey instruments that were used in this study (separate surveys for educators and parents). Each of the instruments included demographic variables, gender, ethnicity, year at school, absenteeism, illness, severity and duration of the illness, impact of the illness, and a series of open-ended questions on concerns and recommendations such that respondents would not be constrained in their responses and could raise issues they deemed important.

The survey instrument had three major focuses. First, it aimed to identify positive strategies and examples of best practice employed by schools to support students with chronic illness as identified by parents and teachers. Secondly, it sought parent and teacher views on their concerns and the barriers they had faced in accessing services for students. Finally, it requested parents and teachers to make recommendations for overcoming barriers and improving services for students with chronic illness.

All surveys were collected and comments from each section transcribed onto a table. The transcripts were read by at least two researchers from the Children's Hospital Research Institute (CHERI) to identify themes, and then a team of researchers jointly developed a framework for analysis. The data were then charted and interpreted, identifying common patterns and emerging overarching themes.

Results and discussion

From the 121 parent and 111 teacher responses, 49 different illnesses were identified. Several neurological conditions such as cerebral palsy and hydrocephalus were included, as the student had accompanying chronic illness complications such as respiratory infections that required frequent medical treatment and/or hospitalisation. Of the 232 children identified in the survey, 81 (35 per cent) had more than one illness; some children had as many as five different illnesses.

The majority of students (212-92 per cent) had conditions that had existed for two or more years prior to the survey. A further 16 students (7 per cent) had been diagnosed within the last year. Fifty students (21.5 per cent) had been hospitalised up to three times within the last year, and one third of students had been hospitalised three or more times; 103 students (44.5 per cent) had not been hospitalised in the last year.

Illnesses were categorised as mild, moderate or severe according to the parent or teacher's identification. Only 8.3 per cent of students had their illness described as mild. A further 90 students (40.5 per cent) fell in the moderate category, and 116 students (50 per cent) had their illness described as severe. The remaining students did not have a classification recorded, as the educators completing the forms were unaware of the severity of the student's illness. All students who had been hospitalised in the last year were described as having a moderate or severe illness. Those hospitalised more than three times were all described as having a severe illness.

An issue of importance was the failure of so many schools (61-12 per cent) to identify students with a chronic illness; 33 per cent (20) of these schools had student populations between 400 and 1200 students and 14 schools had student populations under 50. Given the incidence rate of 2 per cent for severe chronic illness, it would appear that many schools are failing to keep accurate records of students' medical conditions and hence are inadequately prepared to manage their health needs or deal with a medical emergency.

Results of the survey are reported under three areas according to the focus of the survey instrument:

1 Positive strategies and examples of best practice employed by schools to support students with chronic illness as identified by parents and teachers

2 Parent and teacher concerns and barriers when accessing services for students with chronic illness

3 Participant recommendations for supporting students with a chronic illness in the educational setting.

Positive strategies and examples of best practice

Parents and educators were asked to identify up to three positive steps taken by the school or teacher to support the re-entry to school of a student with chronic illness. The information from the parent and teacher surveys is summarised in Table 1.

Clearly, accommodating the physical needs of students can be seen as a commonly held priority among both parents and educators, with 81 respondents (35 per cent) identifying strategies used for physically including the student within the school. Examples of the kinds of physical adjustments made included larger scale modifications to the classroom or school for access, provision of facilities or private areas within the school for medication, and provision of facilities for sleep/resting areas. Minor modifications included provision of specialist equipment for seating, computers and other equipment to aid learning. More subtle inclusive strategies included flexibility within the school timetable to provide alternative activities to accommodate physical needs during sport, recess and lunch breaks; dietary support by canteen staff; and time allowances for such things as completion of work and assignments.

Sixty-seven (32 per cent) respondents identified the importance of administrative support whereby students were not only physically included within the school, but their needs were considered in the overall coordination of the school. A range of strategies for providing assistance for parents and students were documented: procedures for identifying students with special needs, including chronic illness, and strategies for keeping staff informed of their specific needs; appointment of liaison staff to facilitate coordination of services for the student; assistance with identifying services for additional support and completing application forms. Schools were recognised for providing alternative enrolment options such as graduated re-entry programs; allowances to timetables to allow such things as movement within the school and rest times; and part-time enrolments.

The importance of providing educational support for students was well documented by both parents and educators (64-27.5 per cent). Educational support was seen as essential in many cases in assisting students to keep up with peers and perform to their ability. Several parents reported that, for their children, keeping up with their peers educationally was important in the social relationships they had with their peers. Support included assistance catching up with missed school work through tutoring and peer programs; provisions for supplying, marking, returning work during absences; modification of assignment requirements and allowances for completion of work; assistance with preparation for exams; and ongoing monitoring of student progress including assessment of learning needs and individualised instructional programs.

Good communication was listed as a category on its own, although it is recognised that it underpins the coordination of all other support within the school and community. Communication between the school, health professionals, parents, and students was seen as an important tool by both parents and teachers (62-26.5 per cent) in ensuring all were informed of student progress and needs, and changes to medication and adjustments to programs could be made by monitoring progress and trends. Teachers noted that they felt aware of problems that could arise and what information needed to be fed back to health professionals and parents. Teachers and some parents noted the importance of an interschool communication strategy that supported the student in transition to high school or when moving between schools. In some schools, a target teacher or 'liaison' teacher was identified. Teachers and parents also noted strategies for keeping casual teachers informed, such as information sheets in the class roll and signs in the staff room.

A caring school ethos was frequently documented by parents (25-20.5 percent) as they referred to compassionate staff, staff who were caring and supportive, informed about student illness, and willing to be adaptable.

Forty-four parents and educators (19 per cent) noted the importance and presence of medical management plans that included strategies for monitoring of students, medical administration, managing infectious diseases, first aid training, and dealing with medical emergencies.

Peer programs were reported in 31 (13 per cent) schools and included instances where schools had successfully informed other students about illness through teachers, parents, community health services, nurse educators, and dramatisation. Some schools had included familiarisation with some medical procedures and visits to the student in hospital. Respondents also reported the use of friendship strategies such as buddy programs.

The provision of support staff was possible in some schools (31-13 per cent) through internal staffing arrangements and through funded programs for nurse/teachers aide, occupational therapy, speech therapy, reading support, and support teacher for learning difficulties.

Receiving emotional support was reported by 16 (7 per cent) respondents. Students received support through the school counsellor, or social skills programs within the classroom or school, and from the class teacher in the form of reassurance, encouragement and individual discussions.

Parent and teacher concerns and barriers

Although there is some agreement, in general there is considerable variance between the areas of concern as identified by parents and those by teachers. The results from the study are presented in Table 2.

Absenteeism and its associated impact on student academic progress and peer relationships is identified as the most commonly reported concern of parents (57-47 per cent), and second most frequently reported concern of educators (26-23.5 per cent). Their concerns can be broadly summarised into catching up, keeping up and coping, while ill. Catching up on missed school work, assignments, assessment tasks, school excursions and missed instruction places a heavy toll on the ill student who has fallen behind academically. Interruptions to programs where continuous attendance is necessary to complete the learning cycle result in 'holes' in learning and can be a stumbling block for later learning. At the same time, these students are desperately trying to keep up with current class work and related assignments, and cope with the stress associated with catching up while frequently still not well. Students are also having to cope with tests for which they have missed information and are ill prepared, and with the stigma of failure when they can no longer do tasks they were previously capable of.

Educators most frequently reported concerns over a lack of information (52-47 per cent) about students and their illness. Educators wanted more information on the illness, medications and side effects, and the impact on student behaviour, learning and ability to participate physically. They frequently noted they wanted this information from medical professionals. They also required information and skills on how to manage a student's challenging behaviour-information to determine how much of the behaviour was related to the illness, its sequelae and the impact of medication, as distinct from non-related behaviours.

Concerns for student health while at school were reported by 41 (17.5 per cent) respondents, most commonly by parents (66 per cent). Parents were concerned for the child's ability to manage illness at school, and the likelihood of an attack or medical alert at school, and whether students would inform staff when they were not well. Parents indicated concern as to the child's willingness and ability to follow strict diets and treatment regimens at school, where there was the likelihood of stigmatism and peer pressure. Parents and educators commonly identified concerns for the child 'overdoing it' in the context of the child's reduced physical stamina and the demands of the school day. Fears of a relapse for some illnesses and the ability of staff to manage the child in case of a medical emergency were also concerns. Parents documented the assumption made by staff that the child is 100 per cent well when returning to school, and the unrealistic expectations placed upon them; 7 parents (6 per cent) reported anxiety at separating from their child or for the child separating from them. Teachers' concerns most commonly related to not being trained in dealing with medical emergencies at school and identifying when a student was not well.

Limited resources applied to time constraints, programming resources, classroom materials and equipment, and computers and peripherals; 25 teachers (22.5 per cent) reported concerns with time availability and access to needed resources to support programs. No parents identified resources as a concern. Additionally only five of the thirty-one respondents who identified concerns with the teachers' knowledge and skills were parents. Teachers felt 'inadequate' and 'untrained' when it came to providing the necessary catch up and specific educational programs required to meet the educational needs of students with chronic illness who had fallen behind their peers. Parents indicated that teachers lacked programming skills to help their child catch up, medical training to manage the child's illness, and skills to recognise and manage a medical emergency at school. Some parents indicated concern with the attitudes demonstrated by school staff towards themselves and their child. In some cases, school staff rejected the idea that the child was ill. In other cases, school personnel were reluctant to take advice from parents regarding the medical management of their child, and wanted only the doctor's professional opinion.

Of the 32 respondents who reported concerns with regards to social support and peer relationships, 84 per cent of these respondents were parents. They documented concern for the child's acceptance by peers, making friends and having friends to play with, fitting in with peers, telling peers about their illness, and being the centre of attention. Respondents also identified common stressors on maintaining relationships when disrupted by frequent and/or prolonged absences, facing other children when they look different, resuming friendships, fitting back in with friends, and losing touch with friends. Four parents (3 per cent) reported incidences of teasing or bullying at school. Teachers reported the loneliness of the child with an illness when isolated in the playground or withdrawn from physical activities.

Respondents identified concerns with the impact of the illness on performance--the associated loss of self-esteem and confidence, and the inability to perform at the level prior to illness and treatment. Teachers identified students who were becoming 'used' to not attending school, feeling 'out of touch' with school work and disconnected with peers.

Several country educators referred to isolation as a specific issue of concern. Isolation from information, medical support, peers, and access to support networks were identified. Country students frequently were required to travel to city hospitals for treatment, and the distances involved restricted visits and access to medical personnel, as well as reduced contact with peers.
Table 1 Summary of positive school supports--parents and teachers

Positive Parents Parents Teachers Teachers
strategies (n = 121) (%) (n = 111) (%)

Physical inclusion 47 39 34 30.5
Administration 35 29 32 29
Education 33 27 31 28
Communication 29 24 33 30
Compassion 25 20.5 10 9
Medical management 28 23 16 14.5
Peer programs 20 16.5 11 10
Support staff 11 9 20 18
Emotional support 9 7.5 7 6

 Parents & Parents &
Positive teachers teachers
strategies (n = 232) (%)

Physical inclusion 81 35
Administration 67 32
Education 64 27.5
Communication 62 26.5
Compassion 35 15
Medical management 34 19
Peer programs 31 13
Support staff 31 13
Emotional support 16 7

Table 2 Summary of areas of concern--parents and teachers

 Parents Parents Teachers Teachers
Concerns (n = 121) (%) (n = 111) (%)

Absenteeism 57 47 26 23.5
Lack of information 0 0 52 47
Student health 28 23 13 12
Peer relationships 27 22 5 4.5
Teacher skills 5 4 26 23.5
Limited resources 0 0 25 22.5
Impact of illness 7 6 12 11
Communication 0 0 14 12.5
Separation anxiety 7 6 0 0
Country isolation 0 0 6 5.5
Teasing and bullying 4 3 0 0

 Parents & Parents &
 teachers teachers
Concerns (n = 232) (%)

Absenteeism 83 35.5
Lack of information 52 22.5
Student health 41 17.5
Peer relationships 32 14
Teacher skills 31 13.5
Limited resources 25 11
Impact of illness 19 8
Communication 14 6
Separation anxiety 7 3
Country isolation 6 2.5
Teasing and bullying 4 2


Recommendations

Participants listed recommendations for overcoming the concerns identified in the results section. Responses are categorised into the following seven areas ranked in order of importance from most to least as suggested by parents and teachers:

Documentation and adherence to a specific medical management plan Schools need a specific medical management plan in place for the student, including strategies for everyday management as well as emergency treatment procedures. All staff need to be aware of the strategies and trained in medical emergency procedures, and at the same time to respect the student's wishes for privacy.

Academic support Schools need to ensure students have access to the class curriculum when absent, and assistance in catching up with school work on return to school. Recommendations included provision of tutors or teacher aides to assist students catch up following extended absences, access to extra teacher time to make up for missed work, use of computers and the internet to access school curriculum during absences, and coordination of educational services between the hospital school and the home school to ensure that the work accessed during hospital school visits complemented the home school curriculum.

Communication between home/school/hospital/medical professionals Parents, hospitals and schools must communicate to share information. All could benefit from the development of protocols to identify contact people within the education and medical professions and facilitate communication. Teachers are frequently very attuned to the impact a medication or treatment regimen is having on a student's academic performance and/or social relationships. This information may be vital to the medical practitioner in the ongoing management of the child's illness. Parents are also keen to have access to this information to share with the medical practitioner. Likewise information on likely side effects of medication and/or treatments is valuable information for educators when adapting material to individual students' learning styles, and the management of student behaviour.

Access to resources Students with chronic illness need greater access to educational resources to ensure they keep up academically. Parents and educators frequently highlighted the need for funding of additional teacher and teacher aide time to assist students catch up and keep up. The need for resources to ensure the early diagnosis of learning difficulties and close monitoring of academic progress were also recommended. Staff and students need access to training in the operation of the equipment and relevant programs, when resources such as computers are supplied, to ensure resources are used effectively.

Coordination of services within and between the home, school and hospital school Participants highlighted the need for a nominated member of the school staff to undertake responsibility for coordinating communication between the home and the school, and to be responsible for sharing information and coordinating services for the student within the school. The class teacher was commonly identified as undertaking this role for primary students.

Emotional support Recommendations favoured students having access to school counsellor time. Parents documented the importance of school counsellors and educators understanding the emotional needs of children as they undergo challenging treatments, isolation from peers, social rejection, changes in their appearance and academic performance, and increased dependence on professionals for health and well being at a time in their life when their peers are becoming increasingly independent.

Peer support Schools can provide valuable emotional support by implementing strategies to foster positive social relationships, understandings, and acceptance. Attempts by schools to maintain social contact with students while absent for hospitalisation or treatment were positively reported.

Professional development Educators and other school personnel need training on the illness, its treatment, and the impact of medications and treatments on learning and memory. Participants felt strongly that school personnel need specific training on the impact of chronic illness in general and the specific impact of their child's illness.

Physical access Some parents expressed concern about access to all parts of the school, not just limited areas for students whose physical condition and deteriorating health required the use of wheelchair access. Access also included use of school facilities such as bubblers and other playground equipment. The provision of facilities, such as a supervised, hygienic, private room for students requiring medication/s and other treatments, was recommended for consideration-especially for older students.

Conclusion

Schools can make a difference to how well a school, a family and a student cope with a chronic illness. The provision of appropriate support, resources and attitudes by school communities can foster an environment that facilitates the academic and social growth of all students, but particularly for those students for whom the impact of chronic illness and its sequelae are preventing the realisation of their individual potential.

Schools that make a difference are inclusive communities that are caring and supportive, and that respond to student needs at an educational, social, physical and emotional level. They offer coordinated support to the student and family to ensure all students receive access to equity in educational outcomes. They communicate effectively to ensure that important information is shared, and there is informed decision making. There is an interdisciplinary approach that recognises and values the contribution of all and encourages interagency collaboration.

The schools/school systems have responsibility for the development and implementation of policy as it applies to students with chronic illness. This requires recognition of the needs of students with a chronic illness and delineation of responsibility for provision of services and resources.

Students with chronic illness will vary greatly as to their needs for academic, emotional, physical and social support. Some students will require more assistance than others. Providing for the individual needs of a student with a chronic illness can challenge any educator. However, the strategies identified in this paper can help relieve some of the associated fears and concerns in the educational setting.

Keywords

accessibility (for disabled)

chronic illness

parent teacher cooperation

agency cooperation

educational needs

teaching effectiveness

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Author

Shiona Shiu can be contacted at 14 Ness Avenue, Dulwich Hill, New South Wales 2203. E-mail: shiuarch@ozemail.com.au
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Author:Shiu, Shiona
Publication:Australian Journal of Education
Geographic Code:8AUNS
Date:Nov 1, 2004
Words:6257
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