eHealth information preferences of young people (with chronic illnesses) for transition from child to adult healthcare services Prof. I Coyne (PI) Prof. A While Dr. A Sheehan G Prizeman Trinity College Dublin

TRYCIS PROJECT 3 disease groups (Diabetes, CF, CHD) Interviews with young people (14-18), parents, HCP’s from child services Interviews with young adults (18-25), parents, HCP’s from adult services Questionnaire (young people, years) Stakeholder participatory conference Systematic review of research on transition Focus groups with young people (14-25 years) Co-design of information materials & website

PRINCIPLES OF PARTICIPATORY RESEARCH 1.Consultation and cooperation (with relevant stakeholders) 2.Experimentation (with alternative designs) 3.Contextualisation (testing with users & providers) 4.Iterative development (modification in response to evaluation) (Waller et al., 2006).Waller et al., 2006

COOPERATION & CO-LEARNING- STEP 1 Advisory group (parent, nurse, doctor, health psychologist, digital technology expert, web design expert, senior lecturer & project team User group (young people with chronic illnesses) Stakeholder advisory group (voluntary organisations & parents)

STEP 2- RESULTS FROM E-HEALTH SURVEY 207 young people took part 48.1% male & 51.9% were female. 55.3% had not yet transitioned while 44.7% had transitioned

METHODS OF RECEIVING OR EXCHANGING INFORMATION Type of Information Not at all Useful % Not Very Useful % Moderately Useful % Quite Useful % Very Useful % Mobile /SMS/apps (N=195) (N=193) Webpage/website (N=191) Social Network (e.g. Facebook) (N=193) Chatroom (N=191) Twitter (N=191) Skype (N=191)

USEFULNESS OF INFORMATION Type of Information Not at all Useful % Not Very Useful % Moderately Useful % Quite Useful % Very Useful % Personalised results (N=192) Appointments/Rem inders (N=196) Information about the disease (N=195) Advice/Support (N=195) Experience from other people (N=191)

Stakeholder Conference: preferences for website content Step 3- Results from Stakeholders conference

PREFERENCES FOR WEBSITE INFORMATION Friendly & have other young people’s stories (webcasts) FAQs What to expect and practical info Differences between two services. How to access services, maps and photos Profile of care deliverers (Mug shots and job descriptions) Where to get more information

Step 4 - Results From Interviews With Young People (14-25 Years)

CURRENT SITUATION Treated as an event not a process Abrupt move Abrupt ending to relationships Lack of information & preparation No written information Leaflets on illness not transition

WHAT THEY WOULD LIKE IN A WEBSITE Location/facilities – which clinic to go to, where is clinic located- Times, coffee shop, parking, how to get there Would like to ‘see’ the clinic Personnel – who they will be meeting (contact name and details) Hear other young people’s experiences of transition Transition Clinic –are/would be helpful- linked to website

WHAT TO EXPECT What is expected of parents & the young person ? What will happen at visits? Initial plus other visits ? Need information regarding extra responsibility once in adult clinic. Change in treatment of young person – expected to take more responsibility for illness

NEED TO TRUST INFORMATION & SITE Website need to be ‘recommended’ as need to ‘trust’ the information Information in simple English Language familiar from child services and explanation of new terms Explain big words and use simple terms Age appropriate information from early teens Easy to access Colourful, attractive, trendy, graphics, fun

NEED FACE-TO-FACE CONTACT While the young people owned, had access to and used various technological devices, they were keen to highlight the importance of face- to-face contact with their health care professionals and this would still be their preferred method of communication for the future.

THANK YOU