1. RARE DISEASES WEB INFORMATION FOR FAMILIES IN IRELAND [ RD-WIFI] FINDINGS FROM A STUDY RELATED TO THE USE OF THE INTERNET BY PARENTS SEEKING INFORMATION ABOUT THEIR CHILD’S RARE CONDITION CRNINI Conference December 10th 2014 RARE DISEASES WEB INFORMATION FOR FAMILIES IN IRELAND [ RD-WIFI] FINDINGS FROM A STUDY RELATED TO THE USE OF THE INTERNET BY PARENTS SEEKING INFORMATION ABOUT THEIR CHILD’S RARE CONDITION CRNINI Conference December 10th 2014 Professor Carole B. King

2. The project team Professor Honor Nicholl (PI) Professor Carole King Professor Thelma Begley Dr Aileen Lynch Dr Catherine Tracey The Saoirse Foundation

3. Partnership study Funded by the Saoirse Foundation Ireland in partnership with The School of Nursing & Midwifery Trinity College, Dublin.

4. CONTEXT WITHIN THIS CONFERENCE CARING FOR AND SUPPORTING FAMILIES Strategy document : National Rare Disease Plan for Ireland 2014-2018

5. Presentation aim To explore what parents use the Internet for. To overview the contemporary literature. To identify sites parents use for searching for information about their child's rare condition / disease.

6. Rare diseases 6-8% of the population in Ireland have a rare disease 70% of these are children 70-80% are of genetic origin and have a life long impact 30% of children with RD will die before reaching their 5th birthday

7. The overall study Nationwide descriptive exploratory study incorporating both qualitative and quantitative design Aims were to:- To identify information sources used by parents relating to rare conditions To contribute to the design of a specially focused website and the development of information sources Baseline for further study

8. Study method Two phase study:- Phase 1 – focus group interview with parents Phase 2 – completion of a questionnaire Study approved by TCD Ethical Committee for each phase.

9. Data collection Literature review Phase 1 Focus group of parents (n=8). A sample of parents of children with rare conditions recruited by the funder. Data generated questions for Phase 2 Phase 2 Structured questionnaire on Survey Monkey (Response rate n 128)

10. The on line survey 4 main sections 66 questions Focussed on parents / carers Child/children with rare diseases / disorders Sources of information obtained by parents Their use of the Internet to find information about their child’s condition

11. The literature : Findings Increasingly parents are turning to the Internet for information, support and advice (Bouche and Migeot,2008). It can be used as a platform for support, obtain additional information and for managing their children with specific disabilities ( Porter and Edirippulige, 2007) In children with rare conditions the Internet is an important source of information ( Dragusin et al 2013) Nicholl et al (2014) found that there is an impact on parent- professional relationship in children with rare diseases NO specific website Irish exists School of Nursing and Midwifery 24 D'Olier Street Dublin 2

12. Findings: Current Internet Use Use it as a source of information advice and support Information sought on the child’s condition. Parent to parent support is sourced Information sourced is brought to the attention of health professions with mixed responses School of Nursing and Midwifery 24 D'Olier Street Dublin 2

13. Findings: current Internet use Numerous search engines sourced Google, Yahoo, Bing, Ask Jeeves, Aol and Baidu. Parents search at home and mainly in the evenings. Face book is valued for information gathering, sharing, obtaining practical advice, education and provision of support. School of Nursing and Midwifery 24 D'Olier Street Dublin 2

14. Parents use websites for: Information on financial help support groups their child’s condition management of their child- feeding, complications, individual care, morbidities, Benefits and entitlements, tax breaks Child’s entitlements Research trials Accessing specialists Finding support in managing professional information and personnel Managing/navigating the ‘system’ Searching changes over time for example as their child grows older.

15. Parents use websites for: Proven true facts not opinion Dealing with issues likely to arise Parents stories- ‘good’ and ‘bad’ Irish experts Access to second opinions Link to research

16. Parents like: Direct factual information Actionable information Layman’s terms Plain English Parent forum run by a credible health care professional Language parents can understand in input from health professionals. “ pictures and real life stories, not just the science bits”

17. Conclusions At the time of diagnosis and to the present parents found the Internet a useful source of information Site presentation and information may impact on parental anxiety Face book is used and felt to be very important. There are specific requirements in website development needed

18. Recommendations Further research related to the findings. Investigation of searching habits at point of diagnosis Use of information by parents in care giving and in communication with health professionals Reactions from health professionals to parent provided information School of Nursing and Midwifery 24 D'Olier Street Dublin 2

19. Thank you Saoirse Foundation All parents who contributed to this study. School of Nursing and Midwifery 24 D'Olier Street Dublin 2

20. References: All Ireland Institute of Hospice and Palliative Care.(2014)Partnership and Collaboration across Palliative Care. Bouche G. Migeot V. (2008)Parental use of the Internet to seek health information and primary care utilization for their child: A cross sectional study. BMC Public Health 8.:300.1-9. Department of Health (2014)National Rare Diseases Plan for Ireland 2014-2018.Department of Health. Dragusin R. Petcu P. Lioma C. Larsen B. Jorgensen H. Cox I. Hansen LK. Ingwersen P. Winters O.(2013)FindZebra: A search engine for rare diseases. International Journal of Medical Informatics.82.528- 538. School of Nursing and Midwifery 24 D'Olier Street Dublin 2

21. References: Nichol H. Tracey C. Begley T. Lynch A. King C. (2014)Rare Diseases Web Information for Families in Ireland. Saoirse Foundation.(Unpublished) Nicholl H. Doyle C. Begley T. Murphy M. Lawlor A. Malone H (2014)Developing an Information Leaflet on 22q11.2 Deletion Syndrome to use with professionals during healthcare encounters. Journal for Specialists in Paediatric Nursing. 19.(3) 238-246. School of Nursing and Midwifery 24 D'Olier Street Dublin 2

22. References: Porter A. Edirippulige S. (2007)Parents of deaf children seeking hearing loss-related information on the Internet: The Australian Experience. Journal of Deaf Studies and Deaf Education.12.(4) 518- 529. School of Nursing and Midwifery 24 D'Olier Street Dublin 2