The INSCHOOL qualitative project aimed to understand the school experiences and unmet needs of young people across a diversity of long-term physical health conditions. The project addressed a significant knowledge gap by providing first hand accounts from some of these individuals.
The first step in the project was the recruitment of participants from paediatric outpatient clinics. The recruitment resulted in a sample of 89 young people aged 11-18 years old who were enrolled in a mainstream high school and who had been diagnosed with a condition within the following 11 health categories; oncology, cystic fibrosis, diabetes, asthma, rheumatology, haematology, neuromuscular, colorectal surgery, chronic pain, allergies, dermatology.
These young people were then invited to take part in an interview, focus group or an alternative written activity. Creative preparation activities were provided prior to the interviews/ focus groups to give the participants control over the data collection process and allow them to talk about what they viewed as priorities. This also enabled the young people to be more comfortable and confident during the interview/ focus group process. The choice of preparation activity included a target activity, a Venn diagram, a mood board and a letter writing activity.
A needs analysis in combination with participatory analysis sessions with young advisors then identified the common needs of participants in relation to their school lives. The result of this was six needs identified by the young people, demonstrating that, regardless of health condition, many young people share common needs in school. The needs identified are as follows:
1) Need to safely manage my health at school
2) Need for a flexible education pathway
3) Need to be acknowledged and listened to in the right way
4) Need to be included in and supported by the school community
5) Need to build toward my future
6) Need to develop attitudes and approaches to help me cope in school
These needs highlight six areas where future interventions could be targeted to begin making meaningful changes for all young people with long term physical health conditions. Improving safety, flexibility, understanding, inclusion, future planning and approaches to coping within school will likely result in associated improvement in attendance and attainment outcomes. However, the data support evidence showing this group have unmet needs at school beyond attendance and attainment which represent significant impacts and risks to emotional, physical and educational outcomes.
As a combined cohort across a diversity of long-term physical health conditions, these young people make up a significant percentage of the population. However, the majority of research and policies currently focus on only one condition individually. The clear and common needs found across this cohort demonstrates the need for further research and policy to focus on more than one condition at a time to produce more efficient and effective outcomes for the young people.
Overall, quality of life for the young people depended to a large extent on being listened to and believed about their health related needs and seeing schools’ efforts to make reasonable adjustments as needed. When young people were unable to manage their health at school, they could become frustrated which in turn leads to either withdrawal or conflict with teachers. Either option results in the young peoples’ short term needs being left unmet as well as reduced chance of seeking adjustments and help in the future.
The next stage of the INSCHOOL project will work towards actioning this acquired knowledge by developing a needs assessment for use in research as well as a screening tool to identify young people with unmet needs in school.
The full paper can be found here.