RARE DISEASES WEB INFORMATION FOR RARE DISEASES WEB INFORMATION FOR FAMILIES IN IRELAND [ RD-WIFI] FAMILIES IN IRELAND [ RD-WIFI]

FINDINGS FROM A STUDY RELATED TO THE FINDINGS FROM A STUDY RELATED TO THE USE OF THE INTERNET BY PARENTS SEEKING USE OF THE INTERNET BY PARENTS SEEKING INFORMATION ABOUT THEIR CHILD’S RARE INFORMATION ABOUT THEIR CHILD’S RARE

CONDITION CONDITION CRNINI Conference December 10th 2014CRNINI Conference December 10th 2014

Professor Carole B. King

The project team The project team Professor Honor Nicholl (PI)Professor Carole KingProfessor Thelma Begley Dr Aileen LynchDr Catherine TraceyThe Saoirse Foundation

Partnership studyPartnership study

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

CONTEXT WITHIN THIS CONTEXT WITHIN THIS CONFERENCE CONFERENCE

CARING FOR AND SUPPORTING FAMILIES

Strategy document :

National Rare Disease Plan for Ireland 2014-2018

Presentation aim 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.

Rare diseases Rare diseases 6-8% of the population in Ireland

have a rare disease70% of these are children70-80% are of genetic origin and

have a life long impact 30% of children with RD will die

before reaching their 5th birthday

The overall study 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 conditionsTo contribute to the design of a

specially focused website and the development of information sources

Baseline for further study

Study methodStudy method

Two phase study:- Phase 1 – focus group interview with

parentsPhase 2 – completion of a

questionnaire

Study approved by TCD Ethical Committee for each phase.

Data collection Data collection

Literature reviewPhase 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)

The on line survey The on line survey 4 main sections66 questionsFocussed on parents / carersChild/children with rare diseases / disordersSources of information obtained by parentsTheir use of the Internet to find information

about their child’s condition

The literature : Findings 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

Findings: Current Internet Findings: Current Internet Use Use

Use it as a source of information advice and support

Information sought on the child’s condition.

Parent to parent support is sourcedInformation sourced is brought to

the attention of health professions with mixed responses

School of Nursing and Midwifery 24 D'Olier Street Dublin 2

Findings: current Internet Findings: current Internet use 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

Parents use websites for: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.

Parents use websites for:Parents use websites for:Proven true facts not opinionDealing with issues likely to arise Parents stories- ‘good’ and

‘bad’ Irish expertsAccess to second opinionsLink to research

Parents like:Parents like:Direct factual informationActionable informationLayman’s terms Plain EnglishParent 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”

Conclusions 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

Recommendations Recommendations Further research related to the findings.Investigation of searching habits at point

of diagnosisUse 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

Thank youSaoirse FoundationAll parents who contributed to

this study.

School of Nursing and Midwifery 24 D'Olier Street Dublin 2

References: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

References: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

References: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