Transcript CRINI RD WIFI .ppt

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
The project team
Professor Honor Nicholl (PI)
 Professor Carole King
 Professor Thelma Begley
 Dr Aileen Lynch
 Dr Catherine Tracey
 The Saoirse Foundation
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Partnership study
Funded by the Saoirse Foundation Ireland in
partnership with The School of Nursing &
Midwifery Trinity College, Dublin.
CONTEXT WITHIN THIS CONFERENCE
CARING FOR AND SUPPORTING
FAMILIES
Strategy document :
National Rare Disease Plan for Ireland
2014-2018
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
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
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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
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Study method
Two phase study: Phase 1 – focus group interview with
parents
 Phase 2 – completion of a questionnaire
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Study approved by TCD Ethical Committee
for each phase.
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)
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
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The literature : Findings
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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 parentprofessional 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 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
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
Parents use websites for:
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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:
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
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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”
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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
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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
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School of Nursing and Midwifery 24
D'Olier Street Dublin 2
Thank you
 Saoirse Foundation
 All parents who contributed to this study.
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School of Nursing and Midwifery 24
D'Olier Street Dublin 2
References:
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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 .82.528538.
School of Nursing and Midwifery 24
D'Olier Street Dublin 2
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.
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School of Nursing and Midwifery 24
D'Olier Street Dublin 2
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) 518529.
School of Nursing and Midwifery 24
D'Olier Street Dublin 2