The need to know: The information needs of parents of infants with an intellectual disability-a qualitative study.

Abstract

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. 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. A qualitative descriptive methodology was used for the study. Qualitative interviews were undertaken with parents of 11 children with intellectual disabilities in Victoria, Australia in 2014. Data were analysed using descriptive thematic analysis. 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. 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.