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The need to know: The information needs of parents of infants with an intellectual disability-a qualitative study
Tracy Douglas1, Bernice Redley1,2, Goetz Ottmann3
1School of Nursing and Midwifery, Deakin University, Burwood, Vic., Australia.
Insights
Parents of infants with intellectual disabilities need timely, accurate information from health professionals. This knowledge is crucial for optimal infant care and accessing necessary supports during the first year.
Area of Science:
- Developmental Pediatrics
- Intellectual Disability Research
- Parental Support Systems
Background:
- Parents of infants with intellectual disabilities require accessible information for optimal child care.
- Insufficient or delayed information from health professionals can increase parental stress and impede access to essential support services.
Purpose of the Study:
- To investigate the information needs of parents during the first year of life for infants diagnosed with an intellectual disability.
- To identify critical knowledge gaps and information-seeking behaviors of parents in this population.
Main Methods:
- A qualitative descriptive study was conducted.
- Semi-structured interviews were performed with 11 parents of children with intellectual disabilities in Victoria, Australia.
- Descriptive thematic analysis was employed to analyze the interview data.
Main Results:
- Parents encountered significant challenges in obtaining quality information during their infant's first year.
- A phased approach to information delivery is necessary for parents to build a comprehensive knowledge base.
- Crucial knowledge domains identified include understanding the infant's condition, specific needs, and available support services.
Conclusions:
- Health professionals have a key role in providing timely and relevant information to parents of infants with intellectual disabilities.
- This study outlines three essential types of information parents require for effective infant care.
- Findings offer guidance on the optimal timing for delivering this critical information to parents.
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.
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