Tracy Douglas1, Bernice Redley1,2, Goetz Ottmann3. 1. School of Nursing and Midwifery, Deakin University, Burwood, Vic., Australia. 2. Centre for Nursing Research-Deakin University and Monash Health Partnership, Burwood, Vic., Australia. 3. School of Health and Social Development, Deakin University, Burwood, Vic., Australia.
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.
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.
Authors: Marlene Sinclair; Julie Em McCullough; David Elliott; Anna Latos-Bielenska; Paula Braz; Clara Cavero-Carbonell; Anna Jamry-Dziurla; Ana João Santos; Lucía Páramo-Rodríguez Journal: J Med Internet Res Date: 2019-11-25 Impact factor: 5.428