Date of Award


Document Type



Edith Cowan University

Degree Name

Bachelor of Science Honours


School of Psychology and Social Sciences


Faculty of Computing, Health and Science

First Supervisor

Dr Helen Leonard

Second Supervisor

Dr Sonya Girdler

Third Supervisor

Alison Anderson

Fourth Supervisor

Ami Bebbington


Objective: To review the literature examining the work practices and employment patterns of parents of a child with an intellectual disability, with a specific focus on Rett syndrome. Method: Electronic database searches of Medline, Cinahl and ISI Web of Knowledge and manual searches of reference lists were conducted. Government Reports obtained from Australian Bureau of Statistics were also examined. Quality of articles was assessed using Qualitative and Quantitative Assessment Checklists from Standard Quality Assessment Criteria for Evaluating Primary Research Papers used to assess quality of literature. Results: The work practices and employment patterns of parents of children with intellectual disabilities are influenced by the timing of symptom onset and clinical or prenatal diagnosis, the family structure, including the number of and age of family members, as well as the flexibility allowance of their partaken work place. The psychological implications accompanying parents are an important factor resulting in the chosen employment. Conclusion: Population based research is needed to allow for generalisation of results and to encourage government policy amendments and reviews to promote continued workplace flexibility for parents with a child with an intellectual disability. Purpose: The purpose of this study was to explore and describe the work practices and employment patterns of parents who have a child with Rett syndrome. Method: Parent questionnaire data from 2004, 2006 and 2009 in the population-based Australian Rett Syndrome Database (n = 227) was the source of data. This was supported by the family questionnaire data from the InterRett Database Pilot Study (n=154). Descriptive data analysis and logistic regression where appropriate were used to explore the relationships between an individual's work status and skill level, looking further in to their employment history and educational qualifications. Results: AussieRett mothers' skill level at birth of their daughter with Rett syndrome was not significantly associated with the working status by the time their child was 5 years old (p = 0.119). Those mothers with a higher education level were more likely to return to work post birth of their child with Rett syndrome. For each additional year of maternal age the odds of being in paid employment when their child was five years old increased. Residing country influences employment patterns of mothers (p = 0.01) but not fathers (p = 0.872). Work practices of mothers from the United States were less affected by childcare difficulties than those from other countries. Conclusion: Mothers of children with Rett syndrome were more likely to reduce their workforce participation than fathers. It was important to take in to account the maternal age of the mother and birth order of the child with Rett syndrome as prior children has been shown to affect the working status. The findings in Rett syndrome appears to be consistent with the generally Australian community of families of a child with a disability. Further research could be used to develop policies and regulations in the work place for parents of a child with both known and unknown causes of intellectual disability.