Date of Award

2009

Degree Type

Thesis

Degree Name

Bachelor of Science Honours

Faculty

Faculty of Computing, Health and Science

First Advisor

Dr Sonya Girdler

Second Advisor

Jenny Downs

Third Advisor

Dr Helen Leonard

Abstract

Purpose: This literature review examines the body of knowledge concerning the use of respite services and assistive products and technology, child and family characteristics, and parental well-being among families with a daughter with Rett syndrome or with a child with another developmental disability. Method: Literature published in the time period 1983-2009 was searched. Studies were included in this review if they reported use of respite services or assistive products and technology among families with a daughter with Rett syndrome or with a child with another developmental disability. Child and family characteristics and parental well-being were also considered. Results and conclusions: Respite services have the potential to decrease parental stress and therefore may provide an important resource for families with a child with a disability. Additionally a number of characteristics including the age and clinical severity of a child with a disability and where their family lives may impact on the use of supportive resources. However there is a clear need for research to examine the relationships between child and family characteristics, the use of supportive resources and parental well-being in families with Rett syndrome. Purpose: To assess factors that could influence use of equipment and respite services among families with a daughter with Rett syndrome and to examine the relationships between the use of these resources and the health of female caregivers. Method: Parent questionnaire data from 2004 and 2006 in the population-based Australian Rett Syndrome Database was the source of data. Logistic regression was used to analyse relationships between child factors (age, mobility, clinical severity and behaviour), family factors (accessibility and socioeconomic factors) and the use of equipment and respite services in 2004. Linear regression was used to analyse the relationship between the use of these resources in 2004 and the health of female caregivers in 2006. Results: Data from 170 families with girls and women aged 2-28 years was used in this study. The majority (88.3%) of families used at least one piece of equipment in 2004. Increasing mobility restrictions were associated with the use of more equipment. Most (80.1 %) of the families had also used some type of respite services in the past. The use of more home respite was associated with severely restricted levels of mobility and mothers having a vocational or university qualification. The use of more overnight respite was associated with increasing age and presence of behaviours and, mothers being employed in full-time or part-time work. Female caregivers had significantly lower mental health outcomes than the Australian female norm (p<0.001), yet surprisingly no relationship between resource use and mental health was identified. Conclusions: Understanding the relationships between child and family factors, use of equipment and respite services and caregiver health can influence the care and management of girls and women with Rett syndrome.

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