"We don't know what we don't know": Providing information about communication to families of children with Down syndrome.

Melvin, K; Meyer, C; Ryan, B

"We don't know what we don't know": Providing information about communication to families of children with Down syndrome.

Melvin, K Meyer, C Ryan, B

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Publisher:: WILEY
Publication Type:: Journal Article
Citation:: Child Care Health Dev, 2019, 45, (3), pp. 423-432
Issue Date:: 2019-05

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Field	Value	Language
dc.contributor.author	Melvin, K
dc.contributor.author	Meyer, C
dc.contributor.author	Ryan, B https://orcid.org/0000-0002-6053-7614
dc.date.accessioned	2022-04-19T05:02:13Z
dc.date.available	2019-03-09
dc.date.available	2022-04-19T05:02:13Z
dc.date.issued	2019-05
dc.identifier.citation	Child Care Health Dev, 2019, 45, (3), pp. 423-432
dc.identifier.issn	0305-1862
dc.identifier.issn	1365-2214
dc.identifier.uri	http://hdl.handle.net/10453/156456
dc.description.abstract	PURPOSE: Children with Down syndrome often present with a communication disability, and families require information to support their child's communication. Effective provision of information by professionals is an important part of family-centred practice. However, we currently do not know the specific communication information needs of families of children with Down syndrome. This study aimed to (1) explore families' experiences of communication information provision and (2) identify families' preferences regarding when, what and how they would like to receive information about communication. METHOD: A qualitative descriptive approach was used to explore the experiences and information needs of nine family members of children with Down syndrome aged 0-15 years. Data from semistructured, in-depth interviews were analysed using thematic analysis. RESULTS: Three core themes were identified: (1) We want more information about communication to be provided by professionals now and into the future so we can be "self-help people." (2) We want general information resources that help us support our child's communication. (3) We want to have a two-way partnership with professionals so we can share and receive specific information about our child's communication. CONCLUSION: Ineffective information provision restricts families' capacity to be self-help people in supporting communication development. Ongoing provision of both general and specific information about communication is needed in different formats. This study informs the development of resources to better meet families' information needs.
dc.format	Print
dc.language	eng
dc.publisher	WILEY
dc.relation.ispartof	Child Care Health Dev
dc.relation.isbasedon	10.1111/cch.12658
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	11 Medical and Health Sciences, 13 Education, 17 Psychology and Cognitive Sciences
dc.subject.classification	Developmental & Child Psychology
dc.subject.classification	Pediatrics
dc.subject.mesh	Adolescent
dc.subject.mesh	Adult
dc.subject.mesh	Attitude to Health
dc.subject.mesh	Child
dc.subject.mesh	Child, Preschool
dc.subject.mesh	Communication
dc.subject.mesh	Communication Disorders
dc.subject.mesh	Down Syndrome
dc.subject.mesh	Family
dc.subject.mesh	Female
dc.subject.mesh	Health Education
dc.subject.mesh	Humans
dc.subject.mesh	Infant
dc.subject.mesh	Infant, Newborn
dc.subject.mesh	Interviews as Topic
dc.subject.mesh	Male
dc.subject.mesh	Middle Aged
dc.subject.mesh	Professional-Family Relations
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Queensland
dc.subject.mesh	Humans
dc.subject.mesh	Communication Disorders
dc.subject.mesh	Down Syndrome
dc.subject.mesh	Attitude to Health
dc.subject.mesh	Communication
dc.subject.mesh	Family
dc.subject.mesh	Professional-Family Relations
dc.subject.mesh	Health Education
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Adolescent
dc.subject.mesh	Adult
dc.subject.mesh	Middle Aged
dc.subject.mesh	Child
dc.subject.mesh	Child, Preschool
dc.subject.mesh	Infant
dc.subject.mesh	Infant, Newborn
dc.subject.mesh	Queensland
dc.subject.mesh	Female
dc.subject.mesh	Male
dc.subject.mesh	Interviews as Topic
dc.title	"We don't know what we don't know": Providing information about communication to families of children with Down syndrome.
dc.type	Journal Article
utslib.citation.volume	45
utslib.location.activity	England
utslib.for	11 Medical and Health Sciences
utslib.for	13 Education
utslib.for	17 Psychology and Cognitive Sciences
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
utslib.copyright.status	closed_access	*
dc.date.updated	2022-04-19T05:02:12Z
pubs.issue	3
pubs.publication-status	Published
pubs.volume	45
utslib.citation.issue	3

Abstract:

PURPOSE: Children with Down syndrome often present with a communication disability, and families require information to support their child's communication. Effective provision of information by professionals is an important part of family-centred practice. However, we currently do not know the specific communication information needs of families of children with Down syndrome. This study aimed to (1) explore families' experiences of communication information provision and (2) identify families' preferences regarding when, what and how they would like to receive information about communication. METHOD: A qualitative descriptive approach was used to explore the experiences and information needs of nine family members of children with Down syndrome aged 0-15 years. Data from semistructured, in-depth interviews were analysed using thematic analysis. RESULTS: Three core themes were identified: (1) We want more information about communication to be provided by professionals now and into the future so we can be "self-help people." (2) We want general information resources that help us support our child's communication. (3) We want to have a two-way partnership with professionals so we can share and receive specific information about our child's communication. CONCLUSION: Ineffective information provision restricts families' capacity to be self-help people in supporting communication development. Ongoing provision of both general and specific information about communication is needed in different formats. This study informs the development of resources to better meet families' information needs.

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http://hdl.handle.net/10453/156456