- Title
- The need to know : the information needs of parents of infants with an intellectual disability-a qualitative study
- Creator
- Douglas, Tracy; Redley, Bernice; Ottmann, Goetz
- Date
- 2017
- Type
- Text; Journal article
- Identifier
- http://researchonline.federation.edu.au/vital/access/HandleResolver/1959.17/178841
- Identifier
- vital:15465
- Identifier
-
https://doi.org/10.1111/jan.13321
- Identifier
- ISBN:0309-2402
- Abstract
- Aim: The aim of this study was to explore the information needs of parents of infants with an intellectual disability in the first year of life. Background: Parents whose infant has an intellectual disability need access to information if they are to facilitate optimal care for their child. A lack of timely, accurate information provision by health professionals, particularly nurses and midwives, can increase parental stress and hinder access to the supports they and their infant require. Design: A qualitative descriptive methodology was used for the study. Methods: Qualitative interviews were undertaken with parents of 11 children with intellectual disabilities in Victoria, Australia in 2014. Data were analysed using descriptive thematic analysis. Findings: Parents experienced challenges accessing quality information during the first year of their child's life. Parents required incremental information provision to build a strong knowledge base to facilitate optimal care for their infants. Three types of knowledge were identified as crucial for parents: knowledge about (1) the infant's condition; (2) the infant's specific needs and (3) available supports and services. Health professionals were the key resource to access this information. Conclusion: Health professionals’ responsibilities include providing relevant, timely information to parents of infants with intellectual disabilities. This study conceptualises three types of information parents need to develop a strong knowledge base to guide their infant's care and provides guidance concerning the optimal timing for the delivery of information. © 2017 John Wiley & Sons Ltd
- Relation
- Journal of Advanced Nursing Vol. 73, no. 11 (Nov 2017), p. 2600-2608
- Rights
- All metadata describing materials held in, or linked to, the repository is freely available under a CC0 licence
- Rights
- Copyright © 2017 John Wiley & Sons Ltd
- Subject
- 1110 Nursing; Child; Infant; Information; Intellectual disability; Midwives; Nurses; Nursing; Paediatrics; Parent
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