Beyond the medical: The impact of long-term health conditions on young people in school

Dr Lauren Baggley, Dr Charlotte Davies, Dr Erika Payne & Dr Sarah Lakeman all gained their professional doctorate in Educational and Child Psychology (DEdCPsy), in 2021. Their research makes visible the experience of young people whose needs are often narrowly defined as ‘medical’. Since completing their research they have formed a network, all determined to use their knowledge to advocate for children and young people.

Long-term illness amongst children: the context

The World Health Organisation (WHO) describes long term health conditions in the general population as “one of the greatest challenges facing healthcare systems throughout the world” (WHO, 2002, p.1), with estimates suggesting approximately 1 in 5 adolescents in the UK live with a long-term health condition (ONS, 2019). These figures indicate long term health conditions have been a long-recognised issue impacting on children and young people. Recently, long term health conditions are receiving increasing attention because of the Covid-19 pandemic, particularly regarding potential numbers of children who may suffer symptoms associated with ‘long covid’.

How do we define Long-term health conditions?

Terms used to describe long-term medical conditions are rooted within the medical model, and a range of terminology is used interchangeably, for example ‘illness’, ‘medical condition’ or ‘disease’. This can minimise the broader psychosocial elements associated with long term health conditions. In our research, there has been a core aim to understand what a long-term health condition ‘is’ by acknowledging the biological underpinnings of disease, whilst also reflecting on the broader psychosocial aspects of long-term health conditions and how these can effectively be supported. In our research, we have defined a long-term health condition as lasting more than three months, which interferes with a person’s daily living and cause restriction on routines and are rarely spontaneously or completely cured.

Long-Term Health Conditions and Education: What are the Impacts?

Long-term illness has a significant negative impact on a young person’s education. This is summarised in the diagram below:

The experience of long-term illness can affect all aspects of a young person’s life, including their relationships and their sense of ‘well-being’, and their beliefs about their future:

Therefore, it is arguably important that students are supported by school staff who feel competent and are knowledgeable about long term health conditions, the adaptations required in a school setting, and have the necessary resources to provide such support. However, to date there has been limited research eliciting the perspectives of children with long term conditions, or those working with them, on how to support their needs most effectively.

Who are we?

We are four recently qualified educational psychologists who are all for varying reasons, both personal and professional, passionate about improving support for this marginalised group of children and young people. We have all completed research exploring the common theme of the impact of long-term health conditions on children and young people’s education.

Within this article, we explore the context of our research projects, summarising the findings of our research and identifying the key themes we shared. Finally, we describe the four ‘pillars of support’ our research suggests is fundamental in improving education for young people with long term health conditions.

Dr Lauren Baggley (Trained at Southampton University, working at Southend EPS,) laurenbaggley@southend.gov.uk I explored the wide-ranging impact of chronic pain (CP) on children and young people’s school functioning and the experiences of school staff supporting those with CP.

Dr Charlotte Davies (Trained at The University of Nottingham, working at North Northamptonshire Council). My thesis explored the retrospective experiences of young adults who were diagnosed with ME/Chronic Fatigue Syndrome (CFS) while at secondary school.

Dr Sarah Lakeman (Trained at Sheffield University, working in Sheffield). I worked with five young people who have a chronic health condition to explore their experiences of attending a mainstream secondary school.

Dr Erika Payne (Trained at UCL Institute of Education, working at Cambridgeshire County Council, Erika.Payne@cambridgeshire.gov.uk) Thesis exploring the collaboration between health and education services: “A glaring gap”: Advancing the outcomes for adolescents with health-related needs through collaboration — UCL Discovery

What did we find?

Across the research projects, four common themes or ‘pillars’ were identified considering the barriers faced in supporting long term health conditions in school, and how these young people could best be supported.

Understanding the Needs of Young People

Through our research we found that staff were often unaware of the range of needs that stemmed from pupil’s long term health conditions. For example, illness was perceived within the medical model, and whilst the physical health impacts of their condition were better understood and supported, the wider social and emotional impacts often went unidentified, which were often felt to be the biggest barrier in the pupil’s life.

Practice needs to be person-centred

Tensions were identified between how children and young people felt about their health conditions, the support they required and wanting to ‘fit in’ with their peers. Staff often found this difficult to manage, and pupils struggled to know how to advocate for their needs if the provision was not appropriate. This links closely to understanding the needs of young people and planning for these accordingly, focusing on the holistic ‘social’ model of illness, moving beyond the medical definition and conceptualisations, recognising their unique individual perspective and experience.

Improved communication between health and education

School staff and pupils felt there was a distinct lack of information sharing, both within schools and between healthcare professionals and school staff. This led to an inconsistent approach and many staff felt a lack of competence when supporting students as they did not have sufficient information about their needs. This included the need for direct information sharing between healthcare professionals and school staff.

Parents were put into the position of a “go between” to pass information on and suggest adaptations to the school environment. Ensuring there is communication and key information sharing is vital to ensuring appropriate support.

A collaborative ethos is needed; ‘all working together’

Each of us in our individual research projects concluded that a collaborative ethos of ‘working together’ is required to support these young people. Insufficient communication between school and healthcare professionals can lead to a reduced understanding of a young person’s needs. Schools may be unaware of how a condition might impact learning and mental health and wellbeing. At the same time, healthcare professionals may lack awareness of an adolescent’s school attendance and academic progress and therefore no preventative measures can be put in place. Wherever possible, our research suggests multidisciplinary and collaborative practice supports more holistic understanding of a pupil’s needs.

Small Changes Can Make a Big Difference

If you are a professional working in a school, we recommend that you make yourself aware of the prevalence of medical needs in your practice and raise the profile of these needs in your schoolwork. Ask questions of your schools to make sure that these young people are on the ‘radar’ and do not fall between the gaps.

Reach out to healthcare professionals, such as specialist nurses and medical consultants when working with children and young people with health conditions that are less understood in schools. Include information about health conditions and CYP’s readiness to discuss such information in one-page pupil profile, assessments, and reports. With appropriate consent, share psychological advice with healthcare professionals.

Currently, we are developing activities to support professionals to facilitate meaningful conversations with young people around their health needs to help establish what they consider important. This will help to increase young people’s involvement when planning their support. We encourage professionals to address young people as the experts of their individual health needs.

We have hosted webinars about our research projects through Southend EPS Reach out (see: Educational Psychology Reach Out — Webinar Series | Southend Learning Network for further information). There is more information here if you would like about our individual projects.

We are also creating a working group for people interested in developing practice in this area — please contact us at lthcworkinggroup@gmail.com

What about the wider system?

We believe in facilitating positive change at individual, group and systemic levels. The wider system can support improved outcomes for pupils with long term health conditions through better inclusion of this topic in initial teacher training, enabling education staff to feel competent in understanding and supporting young people with long term health conditions.

We also believe that the Department of Education (DofE) could play a significant role in supporting schools to better understand their responsibilities and put together quality medical conditions policies (A petition relating to this is currently underway from the health conditions in schools’ alliance). Such intervention could lead to greater availability of services promoting the inclusion of young people with long term health conditions and prevent pupils working in isolation. AV1 robot avatars that allow children to attend school virtually and continue to engage with their lessons alongside their peers are one such example.

Finally, we believe that greater integration between services is needed, especially around ‘commissioning’, to ensure organisations are working collaboratively to tailor support to the needs of the young person and their family. Supportive resources would be focused on the same outcomes, needs would be recognised by all services, and young people and their families would not need to repeat information across different services.

Overall, we feel that professionals should consider these three questions when working with young people who have a long-term health condition:

● Have I asked this young person what living with their health condition is like for them?

● What could I do today that would make a difference to them?

● What could I do longer term? How do we facilitate change for this group of young people?

These questions will provide a foundation to understand the holistic experience of children and young people with long-term health conditions, and to begin addressing their needs within education.

References:

Office for National Statistics (2019). People with long-term health conditions, UK: January to December 2019-Office for National Statistics. People with long-term health conditions, UK: January to December 2019 — Office for National Statistics

World Health Organization (WHO). (2002). Innovative care for chronic conditions: building blocks for actions: global report. Retrieved from https://www.who.int/chp/knowledge/publications/icccreport/en/ Accessed February 21, 2021