Published online September 11, 2006
PEDIATRICS Vol. 118 No. 4 October 2006, pp. e1152-e1164 (doi:10.1542/peds.2006-0439)
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ARTICLE

Physical and Mental Health of Mothers Caring for a Child With Rett Syndrome

Crystal L. Laurvick, MPHa, Michael E. Msall, MDb,c, Sven Silburn, MSc (ClinPsych)a, Carol Bower, PhDa, Nicholas de Klerk, PhDa and Helen Leonard, MBChBa

a Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, Western Australia
b Pritzker School of Medicine, Kennedy Mental Retardation Center, University of Chicago, Chicago, Illinois
c Developmental and Behavioral Pediatrics, Comer Children's and La Rabida Children's Hospitals, Chicago, Illinois

OBJECTIVES. Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome.

METHODS. We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental component summary scores as the outcome measures of interest. Mothers (n = 135) of children with Rett syndrome completed the SF-12 measure as part of the Australian Rett Syndrome Study in 2002. The analysis investigated linear relationships between physical and mental health scores and maternal, family, and child characteristics.

RESULTS. Mothers ranged in age from 21 to 60 years and their children from 3 to 27 years. Nearly half of these mothers (47.4%) indicated that they worked full-time or part-time outside the home, and 41% had a combined family (gross) income of <40000 Australian dollars. The resultant model for physical health demonstrated that the following factors were positively associated with better maternal physical health: the mother working full-time or part-time outside the home, having some high school education, having private health insurance, the child not having breathing problems in the last 2 years, the child not having home-based structured therapy, and high scores on the Family Resource Scale (indicating adequacy of time resources for basic and family needs). The resultant model for mental health demonstrated that the following factors were positively associated with better maternal mental health: the mother working full-time or part-time outside the home, the child not having a fracture in the last 2 years, lesser reporting of facial stereotypes and involuntary facial movements, being in a well-adjusted marriage, and having low stress scores.

CONCLUSIONS. Our study suggests that the most important predictors of maternal physical and emotional health are child behavior, caregiver demands, and family function.

Key Words: Rett syndrome • SF-12 • caregiver • disability

Abbreviations: RTT—Rett syndrome • MECP2—methyl-CpG-binding protein 2 gene • PCS—physical component summary • MCS—mental component summary • WeeFIM—Functional Independence Measure for Children • RSBQ—Rett Syndrome Behavior Questionnaire • ARIA—Accessibility/Remoteness Index of Australia • SEIFA—Socio-Economic Indexes for Area

Accepted May 23, 2006.




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