The University of Southampton
University of Southampton Institutional Repository
Warning ePrints Soton is experiencing an issue with some file downloads not being available. We are working hard to fix this. Please bear with us.

Parents and carers’ experiences of seeking health information and support online for long-term physical childhood conditions: a systematic review and thematic synthesis of qualitative research

Parents and carers’ experiences of seeking health information and support online for long-term physical childhood conditions: a systematic review and thematic synthesis of qualitative research
Parents and carers’ experiences of seeking health information and support online for long-term physical childhood conditions: a systematic review and thematic synthesis of qualitative research
Objective To systematically review and synthesise qualitative research exploring parents/carers’ experiences of seeking online information and support for long-term physical childhood conditions.

Design Systematic review and thematic synthesis of qualitative research.

Data sources Medline, CINAHL, Embase, PsycINFO and the International Bibliography of the Social Sciences were searched from inception to September 2019. We used thematic synthesis to analyse findings.

Eligibility criteria Primary research papers presenting qualitative data collection and analysis, focusing on parents/carers’ experiences of seeking health information and support from online resources for long-term physical childhood health conditions. No language restrictions were placed.

Results 23 studies from seven countries met inclusion criteria and were included in the synthesis. Included studies presented data collected through interviews/focus groups with 559 parents/carers; free-text surveys and essays with 26 parents/carers and 2407 messages from online support groups. Parents/carers developed a variety of strategies to obtain information and support online, based on personal preferences, appraisal of trustworthiness, perceived needs and previous experiences online. Many parents sought the benefits of online information and support, which included reassurance and validation from online communities, and feeling they had greater knowledge about their children’s conditions. Some concerns and perceived risks were discussed, which often stemmed from prior unsatisfactory experiences of seeking information and support online, consultations with health professionals and seeing distressing stories online.

Conclusion Most parents/carers were successful in obtaining information and support online. Many continued to share experiences with other parents/carers online. The need for information was particularly apparent early after diagnosis of the condition, whereas the need for peer support continued. The potential concerns and perceived risks with information and support online were especially apparent among parents/carers of children with life-limiting long-term conditions. Findings may be useful for health professionals to facilitate discussions regarding use of online resources, and researchers designing online health resources for parents/carers.
2044-6055
Treadgold, Bethan Mair
2a3db993-882b-4fc3-9919-8966edf08aa1
Teasdale, Emma
f156de5f-e83e-40c0-aafa-0c95dd17aa80
Muller, Ingrid
2569bf42-51bd-40da-bbfd-dd4dbbd62cad
Roberts, Amanda
c4a5d206-49c3-4a07-8cfd-5bccf8c93b3b
Coulson, Neil
eaee5265-b3a5-4560-a48f-1684bb8e0b59
Santer, Miriam
3ce7e832-31eb-4d27-9876-3a1cd7f381dc
Treadgold, Bethan Mair
2a3db993-882b-4fc3-9919-8966edf08aa1
Teasdale, Emma
f156de5f-e83e-40c0-aafa-0c95dd17aa80
Muller, Ingrid
2569bf42-51bd-40da-bbfd-dd4dbbd62cad
Roberts, Amanda
c4a5d206-49c3-4a07-8cfd-5bccf8c93b3b
Coulson, Neil
eaee5265-b3a5-4560-a48f-1684bb8e0b59
Santer, Miriam
3ce7e832-31eb-4d27-9876-3a1cd7f381dc

Treadgold, Bethan Mair, Teasdale, Emma, Muller, Ingrid, Roberts, Amanda, Coulson, Neil and Santer, Miriam (2020) Parents and carers’ experiences of seeking health information and support online for long-term physical childhood conditions: a systematic review and thematic synthesis of qualitative research. BMJ Open, 10 (12). (doi:10.1136/bmjopen-2020-042139).

Record type: Article

Abstract

Objective To systematically review and synthesise qualitative research exploring parents/carers’ experiences of seeking online information and support for long-term physical childhood conditions.

Design Systematic review and thematic synthesis of qualitative research.

Data sources Medline, CINAHL, Embase, PsycINFO and the International Bibliography of the Social Sciences were searched from inception to September 2019. We used thematic synthesis to analyse findings.

Eligibility criteria Primary research papers presenting qualitative data collection and analysis, focusing on parents/carers’ experiences of seeking health information and support from online resources for long-term physical childhood health conditions. No language restrictions were placed.

Results 23 studies from seven countries met inclusion criteria and were included in the synthesis. Included studies presented data collected through interviews/focus groups with 559 parents/carers; free-text surveys and essays with 26 parents/carers and 2407 messages from online support groups. Parents/carers developed a variety of strategies to obtain information and support online, based on personal preferences, appraisal of trustworthiness, perceived needs and previous experiences online. Many parents sought the benefits of online information and support, which included reassurance and validation from online communities, and feeling they had greater knowledge about their children’s conditions. Some concerns and perceived risks were discussed, which often stemmed from prior unsatisfactory experiences of seeking information and support online, consultations with health professionals and seeing distressing stories online.

Conclusion Most parents/carers were successful in obtaining information and support online. Many continued to share experiences with other parents/carers online. The need for information was particularly apparent early after diagnosis of the condition, whereas the need for peer support continued. The potential concerns and perceived risks with information and support online were especially apparent among parents/carers of children with life-limiting long-term conditions. Findings may be useful for health professionals to facilitate discussions regarding use of online resources, and researchers designing online health resources for parents/carers.

This record has no associated files available for download.

More information

Accepted/In Press date: 1 December 2020
e-pub ahead of print date: 28 December 2020
Published date: 28 December 2020

Identifiers

Local EPrints ID: 446245
URI: http://eprints.soton.ac.uk/id/eprint/446245
ISSN: 2044-6055
PURE UUID: b3a0e47a-0402-4035-9edd-b96845cdc279
ORCID for Bethan Mair Treadgold: ORCID iD orcid.org/0000-0002-0255-7422
ORCID for Emma Teasdale: ORCID iD orcid.org/0000-0001-9147-193X
ORCID for Ingrid Muller: ORCID iD orcid.org/0000-0001-9341-6133
ORCID for Miriam Santer: ORCID iD orcid.org/0000-0001-7264-5260

Catalogue record

Date deposited: 01 Feb 2021 17:30
Last modified: 08 Jan 2022 03:32

Export record

Altmetrics

Contributors

Author: Emma Teasdale ORCID iD
Author: Ingrid Muller ORCID iD
Author: Amanda Roberts
Author: Neil Coulson
Author: Miriam Santer ORCID iD

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×