Keeping Connected: young people living and learning with ongoing health conditions
Young people with chronic illness or accident trauma often miss schooling due to hospitalisation, lengthy outpatient visits or time spent unwell at home. As a result they struggle to keep up in their studies and can become disconnected from school and important peer relationships. For many of these young people, such disconnections are likely to recur throughout their lives.
The Keeping Connected project has recently investigated the experiences and needs of these young people. Conducted between 2007 and 2009, the project sought to bring out their voices and concerns, and to explore the ways in which they have been supported or hampered in various aspects of their education trajectories. Keeping Connected was led by a multidisciplinary team that included researchers from the Melbourne Graduate School of Education, the University of Melbourne, La Trobe University, Deakin University, and the Royal Children's Hospital Centre for Adolescent Health in collaboration with the Royal Children's Hospital (RCH) Education Institute. It was co-funded by the RCH Education Institute and the Australian Research Council.
The heart of the project consisted of longitudinal case studies of a diverse group of 31 young people who were aged between 10 and 18 years at the start of the study. Each young person was linked with one or two researchers who worked with them over the three years. The young people generated visual images and stories about themselves and their experiences. The insights they provided formed the central component of the research findings.
To obtain a wider sense of how the young people's experiences were influenced by the roles and perspectives of other participants in the care process, the researchers also obtained data from parents, educators and health professionals. The educators, drawn from 10 schools in metropolitan Melbourne or regional Victoria, consisted of two principals, an assistant principal, three student support/welfare coordinators, a classroom teacher, a PE teacher, and the manager of a special learning needs program. The health professionals, based at the Royal Children's Hospital and at the RCH Education Institute, took part in focus groups. Further interviews were also conducted with a second group of young people in their mid-20s, all of whom had experienced chronic illness or trauma during their school years.
The case studies, interviews and focus groups provided information about the views of and challenges faced by the students, parents, teachers and health professionals surveyed, who spoke of their own experiences of chronic illness or their experiences of working with young people in this situation.
The young people in this study were found to be articulate, knowledgeable and capable in relation to their health. They aimed not to be defined by their health issues, working instead to establish and maintain a personal identity that focused on being a regular young person. Most had experienced significant complications to daily life because of their health, yet strove continuously to overcome obstacles and maintain connections to schooling, friends, pets and favourite hobbies. Most articulated long-term aspirations. The combined desire of these young people to be accepted as 'normal' teenagers and to get the most out of life, coupled with the strong support they often received from family, created a unique mix of resilience and vulnerability for this group.
Nevertheless, they also described the difficulties they encountered – as a young person, as a student and with regard to their bodies and sense of self. For many young people living with a chronic health condition, family, social and educational connections are repeatedly strained. The triggers for disconnection include general health setbacks such as medical procedures, depression or fatigue, as well as family disruption as a consequence of the illness, a lack of awareness on the part of school staff and the waxing and waning of friendships – all issues heightened by the isolation and vulnerability of these particular young people.
Social networking was very important for maintaining the links with teachers and peers and was facilitated to some extent by electronic communication such as email, MSN instant messaging, mobile phones and sites like Bebo or Facebook.
Parents were inspired by the way their children managed their own lives, particularly during the difficult and stressful times, but they also raised several concerns. One set of concerns related to their uncertainty about how to access appropriate advice and support. They were frustrated at the lack of communication surrounding the support they felt their children were entitled to. Another set of concerns related to the ability of health and education professionals to understand and support their child's emotional needs. Parents felt that these needs were not as well recognised as the need for information and for assistance with study.
Parents also described the high level of variation between different schools' cultures in terms of the support offered to their child. As a result, the parents put a lot of effort into finding supportive schools. Many families reorganised themselves around their son or daughter's life to enable them to attend school as much as possible and to develop, sustain and achieve future goals in spite of having an ongoing health condition. They also encouraged their child to stay in touch with friends and to participate in social activities both at school and outside school.
Many of the educators recognised the importance of maintaining connections with the young person when they were absent from school. They observed that even a relatively short absence from school could disrupt or break the student's social connections with school peers, with ongoing and serious implications for school participation. They also believed that, from the young person's viewpoint, the consistency of contact from the school indicated how much they were valued and cared for by the school.
The educators also recognised that responses to the young person's situation varied between schools and particular staff members.
School staff were particularly concerned with issues such as finding the time and resources to provide integration aides, to modify the school environment, to modify the young person's individual curriculum, and to organise homework and home visits.
Communicating with health agencies raised another set of issues, including ethical considerations such as how much information to disclose to school staff and students about a young person's health condition.
Some schools recognised they lacked the knowledge required to address the particular needs of some young people; some individual teachers were fearful of doing the wrong thing.
The health professionals described the shifts in their practice that have occurred as medical knowledge and technology have extended life expectancy and the capacity of patients to manage their chronic illnesses. The role of the health professional has moved from providing health care in itself toward helping patients themselves to manage their condition and to live relatively normal lives. Where they might once have seen the health condition first and the young person second, health professionals now saw these individuals as resilient young people with capacity to self-manage their lives, of which the chronic condition was only a part. They believed that the students could look forward to the social and educational activities in which their peers are engaged.
The staff recognised that the young person may be subject to overwhelming amounts of attention from an array of people, and may have little privacy. At the same time they suggested that young people can be made to feel isolated by being treated as different and by being defined by their condition, when they simply want to be seen and treated in the same way as their peers at school.
Implications for schools
One implication for schools is the need for flexible procedures and the related need to provide personalised attention to the young people concerned. School processes and rules for claiming special consideration should not be based only around identifiable absences or explicit markers of physical incapacity. Often the young people experience symptoms that are not outwardly visible, such as fatigue, chronic pain and depression that call for more flexible treatment. The young people are also likely to appreciate teachers and other school staff who involve them in conversations about what they can manage, and who are aware of the fact that their condition might change over time.
It is also important that teachers and other school staff look beyond the impressions that the young people themselves seek to create. During the study young people frequently appeared to outsiders as though they did not need specific educational attention or wellbeing support. This appearance may be generated by the student's determination to 'fit in' and experience a meaningful life in spite of difficult circumstances. The result, however, is that they may have missed out on professional support that could have assisted them.
Schools that have mainstream orientations and programs that support diversity work well for this group, which can thereby be supported without being singled out as different.
It should also be recognised that the young people want to have a say in decisions about managing their education and health. Protocols and resource provision in schools should not be couched in the language of disability, which can limit the empowerment of young people with ongoing medical conditions and their families.
At the most basic level, it is of course important that students' entitlements to education are honoured. In one unfortunate example, a young person who had been academically very strong before developing a serious health condition was encouraged to think about moving to a different school as a result of missing classes and not being able to 'keep up'.
Another implication for schools and education systems more broadly is the need for a clear chain of contact, and clear demarcations of responsibility between hospitals, families and schools, so that young people's educational and social needs are frequently considered and adequately met.
For both health and education professionals there is a need for better communication within and across sectors about how to best support these young people as individuals. It is important to make sure they do not 'fall between the cracks', especially when other risk factors exist in their lives, such as lack of family support, or mental health issues.
This communication needs to continue over time, including during transitions from schooling to the post-school phase, which can be challenging both medically (in terms of the transfer to adult facilities) and academically. Overall pathways need to be identified early and revisited regularly. It needs to be clear who monitors the ongoing journey of the young person and advocates for their changing support needs.
Individual narratives from the 31 young people about how they have strengthened, reconnected, regrouped or broken off their connections with friends, family members and schooling have offered the study insight into how education and health systems might improve their enabling structures and processes to better support those living with chronic illness during their secondary schooling. The circumstances faced by these young people need to be understood and factored into school life at the level of policy and in the attitudes and practices of the individual teacher.
A full report of the Keeping Connected project is expected to become available later this year. Readers wishing to see the report will be able to access it via the Keeping Connected project website: http://www.education.unimelb.edu.au/keepingconnected/
Readers may also contact the project officer Hannah Walker, Melbourne Graduate School of Education.