"We don't know what we don't know": Providing information about communication to families of children with Down syndrome.
- Publisher:
- WILEY
- Publication Type:
- Journal Article
- Citation:
- Child Care Health Dev, 2019, 45, (3), pp. 423-432
- Issue Date:
- 2019-05
Closed Access
Filename | Description | Size | |||
---|---|---|---|---|---|
Child - 2019 - Melvin - We don t know what we don t know Providing information about communication to families of.pdf | Published version | 177.58 kB | Adobe PDF |
Copyright Clearance Process
- Recently Added
- In Progress
- Closed Access
This item is closed access and not available.
Full metadata record
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 | ||
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.
Please use this identifier to cite or link to this item:
Download statistics for the last 12 months
Not enough data to produce graph