A mixed method approach was used to explore quality of life of 101 mothers of children with fragile X syndrome. Mothers completed a self-report of personal quality of life and measures of mental health and well-being. A subset was interviewed about quality of life. The distribution of scores on the Quality of Life Inventory was similar to the norms, indicating that these mothers do not, as a whole, report a lower quality of life than does the average woman. Significant predictors of quality of life were trait hope and parenting stress. The most common positive factor was being a mother. However, they also indicated that parenting a child with fragile X presented challenges and stressors, primarily when the social environment was not supportive.
Perceived quality of life in mothers of children with Fragile X syndrome
Wheeler, A., Skinner, DG., & Bailey, D. (2008). Perceived quality of life in mothers of children with Fragile X syndrome. American Journal on Mental Retardation, 113(3), 159-177. http://aaiddjournals.org/doi/abs/10.1352/0895-8017%282008%29113%5B159%3APQOLIM%5D2.0.CO%3B2