Portal de Periódicos da CAPES

Establishing Australian school re‐entry service guidelines for children diagnosed with cancer

2017; Wiley; Volume: 53; Issue: 6 Linguagem: Inglês

10.1111/jpc.13563

1440-1754

Alistair Lum, Barb Donnan, Claire E. Wakefield, Joanna E. Fardell, Glenn M. Marshall,

Acute Lymphoblastic Leukemia research

The educational implications of childhood cancer treatment can be significant, adverse and diverse. Treatment side effects include poor concentration and attention, fatigue, social isolation and mobility difficulties. Treatment implications often require targeted support to prevent long-term consequences, such as failing school grades or school dropout. School re-entry services are particularly important to facilitate communication between hospital, home and school to inform school staff about the child's condition, progress and educational needs. In 2015, Thompson and colleagues led an expert multidisciplinary collaboration between American oncology, psychosocial and education specialists to review the school re-entry service literature and establish the international benchmark for standards of educational care.1 These standards of educational care inform school re-entry guidelines that currently exist in American and European paediatric haematology/oncology organisations.2-5 Australian documents on childhood cancer and schooling exist,6-10 but researchers have identified variation in key school re-entry components,11, 12 and the documents do not appear to meet the standards of educational care set out by Thompson and colleagues. Australian children diagnosed with cancer miss significant periods of school during cancer therapy, which can last for up to 2 years.13 Their families and education and oncology organisations have been advocating for improved and consistent school re-entry services for some time.6, 11-13 Continued action and advocacy at the hospital and school level will encourage the government to recognise this issue and dedicate funds accordingly. We aim to highlight the gaps within current Australian policies and practices and provide recommendations based on international practices to develop comprehensive guidelines for children, parents, educators and paediatric oncology teams. In Australia, over 500 school-aged children are diagnosed with cancer each year.17 Improvements in childhood cancer therapy have led to cure rates above 80%, with more than 5000 school-aged child cancer survivors and more than 15 000 adult survivors of child cancer in Australia today.17 Despite these high numbers, the existing policies do not guarantee school or hospital support practices that meet the educational needs of Australian children diagnosed with cancer.11, 12 For example, a 2015 study found that 62% of Australian child cancer survivors developed special education needs following treatment, yet less than 10% received government-funded school support.13 In a 2012 study, Australian teachers reported uncertainty regarding their role in providing academic support to students with chronic illness, leaving students' learning desires unsatisfied.18 Schools also appear to inconsistently provide curriculum-based learning support for students who are recovering at home (i.e. homebound students), despite more than 40% of Australian students diagnosed with cancer missing more than 6 months of school.13 Hospital schools typically provide only 2 h of teaching to paediatric inpatients each week.11 A 2015 report examining Australian schools' policies to support school attendance among students with chronic health conditions found that no Australian policy addressed the need for reintegration services.11 Parents of students diagnosed with cancer often describe educational support as inconsistent, with 'the level of support … totally dependent on the school.'13 Australian parents and educators agree that children diagnosed with cancer need better policy-driven school support,19, 20 reflecting similar calls for policy action by UK service providers made in 2012.21 There is a clear need for strong communication frameworks that underscore the benchmark set by Thompson and colleagues' standards of care. Australian documents6-10 on cancer and school acknowledge the value of communication; however, there is a need to establish a collaborative school, hospital and home learning support team to guide the use of this communication. No Australian documents6-10 address the second Thompson recommendation, that a member of the paediatric oncology team should be assigned the responsibility of liaising between hospital, home and school. Table 1 presents our proposed baseline requirements for future Australian guidelines to meet the international benchmark. The guidelines should be easily accessible to all parents of children with cancer and should be shared by the paediatric oncology team with families and schools as standard practice. In addition to the contributions of local, state and national advocates, contributions from key Australian oncology and education organisations and governments is crucial to the success of these guidelines. In our review of the evidence and policies, and through interviews with stakeholders, we identified four key guideline recommendations. Australian law stipulates that education for students diagnosed with cancer remains the responsibility of the student's school of enrolment.22 Federal anti-discrimination and disability legislation states that students with disability, which includes children diagnosed with cancer under the Disability Discrimination Act 1992, must be provided educational opportunities 'on the same basis' as students without disability.22, 23 Schools are required to make 'reasonable adjustments' where necessary. No Australian schools' policies address students' need for school reintegration services.11 A 2015 review of Australian hospital schools identified considerable variation in the degree of communication between the hospital school and the child's regular school.12 These reports indicate that current practices are not in step with legal requirements. The UK's Department of Education published 'statutory guidance' documents to provide education professionals with clear instructions on how to deliver legislation-aligned services for students with medical needs.24 Specific instructions include the development, implementation and review of school support policies; arranging staff training; assigning roles and responsibilities to school staff; and keeping records of students' school functioning. Australian guidelines for school re-entry services must also clarify the legal responsibilities of health and education professionals, for example, by clarifying legislation-bound disability definitions, exemplifying 'reasonable adjustments' and facilitating ongoing monitoring of students' unique needs. Australian students diagnosed with cancer, their parents, teachers and clinicians have all expressed their desire for a structured communication pathway with which to relay information about the child's health status, progress and potential treatment-related educational implications.13, 19, 25, 26 Some hospital and school systems may be delivering such liaison services as part of their individualised care for the child; however, variation across jurisdictions exists.12 Two 2015 Australian studies reported inconsistencies in communication across hospitals and schools and that many school and hospital staff experienced communication difficulties with the other sector.12, 13 Communication structures are required to ensure that all hospital, school and family stakeholders understand the educational needs of the child. National and international research indicates that a hospital-based school liaison officer is required in all paediatric oncology wards to provide a central line of communication between schools, hospitals and home.1, 15 The Cincinnati Children's Hospital Medical Centre (CCHMC) has led a successful hospital-to-school liaison programme for cancer patients since 1979, including a referral-based, individualised education service providing comprehensive training of school personnel about the child's illness and their educational needs.27 Ronald McDonald House Charities (RMHC) and Fight Cancer Foundation (FCF), both non-government organisations, provide similar hospital-based school liaison services in paediatric hospitals in New South Wales (NSW), Victoria and South Australia in a similar vein as CCHMC.13, 28 As outlined in Thompson and colleagues' standards of educational care, guidelines must include the need to designate a skilled paediatric oncology team member as the primary hospital-to-school liaison officer. We advocate that guidelines examine effective hospital-to-school liaison programmes so as to develop a timeline to facilitate actions, such as the school reintegration protocol developed by Tresman and colleagues or the example provided in Figure 1.29 Most Australian teachers do not complete pre-service or in-service training aimed at meeting the needs of children diagnosed with cancer or other chronic illnesses.30 Teachers may not feel prepared to accommodate the needs of children diagnosed with cancer and have identified specific informational needs that they require before they can deliver support.14, 31, 32 Considering that 10–20% of all children and adolescents suffer a chronic illness, university curriculums should include training about educational implications and management of chronic illness in schools.33 Guidelines must facilitate university training in the required competencies of Australian educators to understand the impact of cancer and its treatment on cognitive and psychosocial functioning and how these relate to school outcomes; gain the ability to identify, monitor and accommodate for students diagnosed with cancer who are at greatest risk of educational deficits; and develop skills to provide special considerations for students' academic and non-academic needs. Currently, the only national training pathway to reach these competencies in Australia is EDMed, a 1-h, free-of-charge, NSW Board of Studies-accredited professional development course delivered by RMHC to pre-service and in-service teachers and education and health professionals.34 School executives, teachers, school psychologists and other school staff would benefit from more comprehensive training to improve their skills in supporting children diagnosed with cancer as well as other chronic illnesses. Comprehensive information resources regarding the school needs of children with cancer have been developed by the Cancer Council Australia, Cancer Australia and RMHC, which educational professionals can use to learn about the educational implications of cancer.6, 7, 10 Health professionals can share the unique implications of each child's cancer with the child's school. Individual health-care and education plans are required to communicate the specific health and educational needs of each child diagnosed with cancer, such as the cancer-specific health-care plan developed by the South Australian Department of Education and Child Development.1, 35 With the families' consent, information about cancer may also be shared with the child's classmates as peer knowledge can create positive peer attitudes and behaviours towards children diagnosed with cancer.15 The national Australian charity Camp Quality offers a puppet show to schools that aims to educate primary school children about cancer.36 EDMed and Camp Quality's puppet show are community-funded projects and cannot be expected to meet the information needs of all Australian schools. Government resources are required to build the support competencies of Australian educators to effectively accommodate the needs of children diagnosed with cancer. Clinicians are now more commonly seeing children diagnosed with cancer as outpatients, with children spending less time hospitalised and more time recovering at home.37 While having some positive implications, this modern practice means that students are homebound and miss learning and social opportunities that are otherwise provided in the hospital or school.38, 39 Australian States and Territories may offer homebound education services as part of their regular or distance education programmes; however, it is unclear if children diagnosed with cancer meet eligibility requirements.40, 41 Hospital schools may also be able to provide home–hospital learning support, but the legal responsibility largely falls on the child's school of enrolment.22 Despite schools' responsibilities, parents are often the primary advocates for their child's needs. Many parents may be unable to effectively advocate, leading to a highly iniquitous system for Australian children affected by cancer. Countries such as the USA, UK, Belgium, France and New Zealand provide homebound learning support to students who miss a set number of school days because of illness. The only Australian jurisdiction with clear eligibility requirements for homebound education is Western Australia, which provides homebound education as part of the Department of Health and Department of Education Memorandum of Understanding that led to the establishment of the School of Special Educational Needs: Medical and Mental Health (SSEN). The SSEN offers homebound education to students who are predicted to be absent for 10 days or more due to a medical reason.42 The South Australian non-government organisation Childhood Cancer Association home tutor scheme provides homebound tutoring to children unable to attend school due to their cancer treatment.43 The proposed new guidelines must include a clear statement on the impact of ongoing absenteeism, the importance of homebound education and the standard number of days of absence before homebound services are delivered. The guidelines would encourage paediatric oncologists to liaise with their school counterparts about the child's prognosis in terms of likely days of school missed due to cancer treatment and the location of the child during treatment (i.e. hospital or home). Other proposed components of the guidelines to facilitate homebound learning include establishing a national homebound learning programme, a method of identifying the most appropriate educators to deliver homebound learning and the key educational components of individualised learning. Online programmes, such as Compass' online school and student management platform,44 can also help students, parents and educators manage academic and non-academic school activities from home and school.45 High-quality education is integral to the complete development of a child, yet children diagnosed with cancer face numerous barriers that prevent access to and participation in school. Current solutions to these barriers are inconsistently delivered across Australia, meaning that children diagnosed with cancer may not receive sufficient educational support from their hospital or school. Education and health professionals can implement the national and international guidelines presented here in their own practices. However, for a consistent and fair model, we need school re-entry service guidelines that are recognised by federal and state law and resourced by federal and state governments. An Australian steering committee of education and health professionals and federal and state policy makers is required to establish these guidelines along with funding for implementation. School re-entry guidelines can ensure that every child diagnosed with cancer receives the high-quality educational support that they need to reach their full potential. We acknowledge Carolyn Armstrong and Rachel Hazel, Ronald McDonald Learning Program (RMLP) Co-ordinators; Kristine Hindle, NSW RMLP Manager; Jenny Lavoipierre, Mother of cancer survivor and advocate; Julie Storok, School Psychologist; Tracey Webster, Ronald McDonald House Charities (RMHC) National Learning Program Manager; and Grant Wheatley, Principal of the School of Special Education Needs: Medical and Mental Health Needs, Department of Education, Western Australia, who provided their time and thoughts as this article was developed. A Lum is supported by the Kids Cancer Alliance and Ronald McDonald House Charities. CE Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501). GM Marshall is supported by the National Health and Medical Research Council of Australia, Cancer Institute New South Wales and Cancer Council New South Wales. The Behavioural Sciences Unit is supported by the Kids with Cancer Foundation.