Along with the University of NSW, Sydney, we are excited to share progress of the Ready, Steady, School study since its launch in January 2017.
The Ready, Steady, School study was initiated to develop an evidence-based school re-entry program for child, adolescent and young adult cancer survivors. The program aims to facilitate survivours' school engagement during and after treatment. Development of the program has been a collaborative endeavour with feedback and recommendations gleaned from healthcare and education professionals along with cancer survivors and their families. Here, the Ready, Steady, School team from share a status report of the program development.
Ready, Steady, School
We have analysed qualitative data collected from 20 stakeholders and consumers using content analysis to complement the systematic review and inform the development of Ready, Steady, School (RSS). The website has been built with content developed ready to be uploaded after review by our expert advisory panel who will assess readability, appropriateness and relevance.
Website structure and navigation
The website has been designed to accommodate the needs of three user groups: students, educators and parents/guardians (Figure 1). After logging into their user profile, a user is taken to pre-screening questions about the child (their age, cancer diagnosis and treatment). After this, they move on to complete a needs assessment, where a user selects all relevant information they wish to view (Figure 2). After completing their needs assessment, a tailored information report will be generated for the user, which will be checked off after a user reads the information (Figure 3). The user has the option to access the “full website” from the dashboard for more general information.
Website content
The website content is being developed to specifically support the following user groups: primary school students, high school students, primary school parents, high school parents, primary school teachers and high school teachers. The content is composed of five key domains including cancer and treatment, education, health and wellbeing, social wellbeing and siblings.
Expert Advisory Panel
The content for all users will be reviewed by an expert advisory panel consisting of parents, students, educators and healthcare professionals. We have obtained ethics approval from the Sydney Children’s Hospital Network (SCHN) Human Research Ethics Committee (HREC) and Sydney Children’s Hospital governance body. We have invited 22 eligible consumers, and education and healthcare professionasl with a total of 18 opt-ins. Recruitment is currently open.
If you would like to be considered for the expert advisory panel, please email
Recruitment
We have conducted 20 semi-structured interviews, including parents (N=3), healthcare professionals (allied health N=1; nursing N=4; psychologists N=2) and educators (school liaison services N=7; secondary school teacher N=3). These interviews represent consumers across four Australian states: QLD, NSW, WA and Victoria.
We are continuing to recruit participants for the qualitative interviews to further explore re-entry processes, needs and barriers in each state.
Pilot Study
While we are finalising the website platform and the expert panel review of the content, we are concurrently preparing for the pilot study to trial and review readability, feasibility, and acceptability of the RSS website platform. We have drafted the scientific protocol for the pilot study and will be inviting feedback from investigators.
We are now preparing an ethics application under the newly developed NHMRC Human Research Ethics Application (HREA) documentation and procedures. We anticipate we will have ethics approval by late May 2018 to begin the pilot study.
If you are a parent, student or teacher interested in participating in the Ready, Steady, School pilot, please email m.burns@unsw.edu.au or j.fardell@unsw.edu.au.
Recent publications of interest
Here is a summary of a recent publication addressing educational outcomes and needs of children and adolescent and young adult (AYA) cancer survivors.
Fardell Joanna E, Wakefield Claire E, Patterson Pandora, Lum Alistair, Cohn Richard J, Pini Simon A, and Sansom-Daly Ursula M.
Narrative Review of the Educational, Vocational, and Financial Needs of Adolescents and Young Adults with Cancer: Recommendations for Support and Research
Abstract
Adolescents and young adults (AYAs) with cancer have unique needs around education and vocation during and after treatment. This narrative review series aims at documenting the unique needs of AYAs from the current literature and at providing recommendations to inform an update of the Australian National Service Delivery Framework for AYAs with Cancer. AYAs with cancer may experience impairments to cognitive, physical, and psychological functioning and health, which can adversely affect their academic grades, peer relationships, and likelihood of entering the workforce. Treatment expenses and time off work can stifle AYAs' financial independence from their parents. The combined effect of disrupted education, vocation, and financial dependence can reduce AYAs' sense of identity. Although support is available in some countries, support efficacy is yet to be clearly established. Continued research is required to deliver successful education and work reintegration programs that build the confidence of AYAs with cancer to achieve their best. Educational and vocational support, as well as financial advice, may improve AYAs' financial security and quality of life during survivorship.