ConnectEpeople: A review of the online support organizations across the EU for parents with children who have Down Syndrome, Spina Bifida, Cleft Lip and severe Heart Disease requiring surgery

Marlene Sinclair, Anna Latos-Bielenska , Julie Mc Cullough, David Elliott

Research output: Contribution to conferencePoster

Abstract

Background: Support organizations for parents who have children with
Down Syndrome, Spina Bifida, Cleft Lip and Severe Heart Disease Requiring
Surgery, provide information, advice and social support to members using
a range of methods. One objective of the ConnecEPeople research project
was to identify organizations across Europe and determine the methods of
communication they most commonly use.
Methods: Using the search engine Google, a scoping review was conducted
using a systematic online search from August to October 2017.
Websites were included if they were for parent support organizations,
exclusively for the congenital anomaly of interest and based in any one of
10 European countries involved in the EUROlinkCAT study.
Results: In total 3971 sites were identified and following removal of
irrelevant sites (n¼3296) and 27 duplicates, a sample of 648 remained.
Further review led to the removal of 515 sites as they were not support
organizations. A further 13 were removed as 11 were based outside
Europe, one could not be opened and one was not operational. In total, 120
websites were included. Twenty different methods of communication
were used. Online communication networks were used by 117 organizations, with 100 using email, 96 using Facebook and 66 using
Twitter.
Conclusion: Over 97% of support organizations used online communication.
Facebook was the most popular social network (82%) followed by
Twitter (56%). This data has been used to justify the use of social media to
facilitate a communication platform for ConnectEpeople to connect parents
and researchers in discussions about shared research priorities.

Conference

Conference4th EUROCAT Symposium on Congenital Anomalies: Risk Factors for Congenital Anomalies
CountryItaly
CityIspra
Period14/06/1815/06/18

Fingerprint

Spinal Dysraphism
Cleft Lip
Down Syndrome
Heart Diseases
Parents
Organizations
Communication
Social Support
Social Media
Search Engine
Research
Research Personnel

Cite this

Sinclair, M., Latos-Bielenska , A., Mc Cullough, J., & Elliott, D. (2018). ConnectEpeople: A review of the online support organizations across the EU for parents with children who have Down Syndrome, Spina Bifida, Cleft Lip and severe Heart Disease requiring surgery. 570-571. Poster session presented at 4th EUROCAT Symposium on Congenital Anomalies: Risk Factors for Congenital Anomalies, Ispra, Italy.
Sinclair, Marlene ; Latos-Bielenska , Anna ; Mc Cullough, Julie ; Elliott, David. / ConnectEpeople: A review of the online support organizations across the EU for parents with children who have Down Syndrome, Spina Bifida, Cleft Lip and severe Heart Disease requiring surgery. Poster session presented at 4th EUROCAT Symposium on Congenital Anomalies: Risk Factors for Congenital Anomalies, Ispra, Italy.2 p.
@conference{5f353e5cd56946b7885d3ab31558e392,
title = "ConnectEpeople: A review of the online support organizations across the EU for parents with children who have Down Syndrome, Spina Bifida, Cleft Lip and severe Heart Disease requiring surgery",
abstract = "Background: Support organizations for parents who have children withDown Syndrome, Spina Bifida, Cleft Lip and Severe Heart Disease RequiringSurgery, provide information, advice and social support to members usinga range of methods. One objective of the ConnecEPeople research projectwas to identify organizations across Europe and determine the methods ofcommunication they most commonly use.Methods: Using the search engine Google, a scoping review was conductedusing a systematic online search from August to October 2017.Websites were included if they were for parent support organizations,exclusively for the congenital anomaly of interest and based in any one of10 European countries involved in the EUROlinkCAT study.Results: In total 3971 sites were identified and following removal ofirrelevant sites (n¼3296) and 27 duplicates, a sample of 648 remained.Further review led to the removal of 515 sites as they were not supportorganizations. A further 13 were removed as 11 were based outsideEurope, one could not be opened and one was not operational. In total, 120websites were included. Twenty different methods of communicationwere used. Online communication networks were used by 117 organizations, with 100 using email, 96 using Facebook and 66 usingTwitter.Conclusion: Over 97{\%} of support organizations used online communication.Facebook was the most popular social network (82{\%}) followed byTwitter (56{\%}). This data has been used to justify the use of social media tofacilitate a communication platform for ConnectEpeople to connect parentsand researchers in discussions about shared research priorities.",
author = "Marlene Sinclair and Anna Latos-Bielenska and {Mc Cullough}, Julie and David Elliott",
year = "2018",
month = "9",
day = "1",
language = "English",
pages = "570--571",
note = "4th EUROCAT Symposium on Congenital Anomalies: Risk Factors for Congenital Anomalies ; Conference date: 14-06-2018 Through 15-06-2018",

}

Sinclair, M, Latos-Bielenska , A, Mc Cullough, J & Elliott, D 2018, 'ConnectEpeople: A review of the online support organizations across the EU for parents with children who have Down Syndrome, Spina Bifida, Cleft Lip and severe Heart Disease requiring surgery' 4th EUROCAT Symposium on Congenital Anomalies: Risk Factors for Congenital Anomalies, Ispra, Italy, 14/06/18 - 15/06/18, pp. 570-571.

ConnectEpeople: A review of the online support organizations across the EU for parents with children who have Down Syndrome, Spina Bifida, Cleft Lip and severe Heart Disease requiring surgery. / Sinclair, Marlene; Latos-Bielenska , Anna; Mc Cullough, Julie; Elliott, David.

2018. 570-571 Poster session presented at 4th EUROCAT Symposium on Congenital Anomalies: Risk Factors for Congenital Anomalies, Ispra, Italy.

Research output: Contribution to conferencePoster

TY - CONF

T1 - ConnectEpeople: A review of the online support organizations across the EU for parents with children who have Down Syndrome, Spina Bifida, Cleft Lip and severe Heart Disease requiring surgery

AU - Sinclair, Marlene

AU - Latos-Bielenska , Anna

AU - Mc Cullough, Julie

AU - Elliott, David

PY - 2018/9/1

Y1 - 2018/9/1

N2 - Background: Support organizations for parents who have children withDown Syndrome, Spina Bifida, Cleft Lip and Severe Heart Disease RequiringSurgery, provide information, advice and social support to members usinga range of methods. One objective of the ConnecEPeople research projectwas to identify organizations across Europe and determine the methods ofcommunication they most commonly use.Methods: Using the search engine Google, a scoping review was conductedusing a systematic online search from August to October 2017.Websites were included if they were for parent support organizations,exclusively for the congenital anomaly of interest and based in any one of10 European countries involved in the EUROlinkCAT study.Results: In total 3971 sites were identified and following removal ofirrelevant sites (n¼3296) and 27 duplicates, a sample of 648 remained.Further review led to the removal of 515 sites as they were not supportorganizations. A further 13 were removed as 11 were based outsideEurope, one could not be opened and one was not operational. In total, 120websites were included. Twenty different methods of communicationwere used. Online communication networks were used by 117 organizations, with 100 using email, 96 using Facebook and 66 usingTwitter.Conclusion: Over 97% of support organizations used online communication.Facebook was the most popular social network (82%) followed byTwitter (56%). This data has been used to justify the use of social media tofacilitate a communication platform for ConnectEpeople to connect parentsand researchers in discussions about shared research priorities.

AB - Background: Support organizations for parents who have children withDown Syndrome, Spina Bifida, Cleft Lip and Severe Heart Disease RequiringSurgery, provide information, advice and social support to members usinga range of methods. One objective of the ConnecEPeople research projectwas to identify organizations across Europe and determine the methods ofcommunication they most commonly use.Methods: Using the search engine Google, a scoping review was conductedusing a systematic online search from August to October 2017.Websites were included if they were for parent support organizations,exclusively for the congenital anomaly of interest and based in any one of10 European countries involved in the EUROlinkCAT study.Results: In total 3971 sites were identified and following removal ofirrelevant sites (n¼3296) and 27 duplicates, a sample of 648 remained.Further review led to the removal of 515 sites as they were not supportorganizations. A further 13 were removed as 11 were based outsideEurope, one could not be opened and one was not operational. In total, 120websites were included. Twenty different methods of communicationwere used. Online communication networks were used by 117 organizations, with 100 using email, 96 using Facebook and 66 usingTwitter.Conclusion: Over 97% of support organizations used online communication.Facebook was the most popular social network (82%) followed byTwitter (56%). This data has been used to justify the use of social media tofacilitate a communication platform for ConnectEpeople to connect parentsand researchers in discussions about shared research priorities.

M3 - Poster

SP - 570

EP - 571

ER -

Sinclair M, Latos-Bielenska A, Mc Cullough J, Elliott D. ConnectEpeople: A review of the online support organizations across the EU for parents with children who have Down Syndrome, Spina Bifida, Cleft Lip and severe Heart Disease requiring surgery. 2018. Poster session presented at 4th EUROCAT Symposium on Congenital Anomalies: Risk Factors for Congenital Anomalies, Ispra, Italy.