Life Satisfaction Among Mothers of Individuals with Prader-Willi Syndrome
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Mothers of individuals with Prader-Willi syndrome (PWS) often experience numerous stressors, even when compared to mothers of children with other intellectual and developmental disabilities. Despite this, these mothers show great variability in self-reported life satisfaction. Using data from a longitudinal study of individuals with PWS and their families, the present study analyzed factors related to maternal life satisfaction, both cross-sectionally and over time. Results show that both child factors (e.g., behavior problems, hyperphagia) and maternal factors (e.g., stress, coping style) were significantly related to maternal life satisfaction. However, none of the tested variables predicted change in life satisfaction over time. Research and practice implications are discussed.
KeywordsPrader-Willi syndrome Life satisfaction Mothers Coping
We would like to thank the children and families who participated in the study and made this research possible, as well as Elizabeth Roof, M.A., Senior Research Scientist and all the members of the Prader-Willi Syndrome Lab at the Vanderbilt Kennedy Center. This research was supported by NICHD Grants R01HD035684, U54 HD061222, and P30HD015052.
CS conceived of the present study, conducted the analyses, and drafted the manuscript. CL participated in statistical interpretation and draft of the manuscript. ED is the PI for the larger study from which the present data was drawn and participated in draft of the manuscript. All authors made contributions worthy of authorship and approved of the final version of the manuscript.
- Abidin, R. R. (1995). Parenting stress index, third edition: Professional manual. Odessa, NY: Psychological Assessment Resources Inc.Google Scholar
- Achenbach, T. M., & Rescorla, L. A. (2001). Manual for the ASBEA school-age forms and profiles. Burlington, VT: University of Vermont.Google Scholar
- Aishvarya, S., Maniam, T., Karuthan, C., Sidi, H., Nik Jaafar, N. R., & Oei, T. P. (2014). Psychometric properties and validation of the satisfaction with life scale in psychiatric and medical outpatients in Malaysia. Comprehensive Psychiatry, 55(S1), S101–S106. doi: 10.1016/j.comppsych.2013.03.010.CrossRefPubMedGoogle Scholar
- Bian, Y., Xiong, H., Zhang, L., Tang, T., Liu, Z., Xu, R., et al. (2011). Change in coping strategies following intensive intervention for special-service military personnel as civil emergency responders. Journal of Occupational Health, 53(1), 36–44. doi: 10.1539/joh.O10009.CrossRefPubMedGoogle Scholar
- Dykens, E., & Cassidy, S. B. (1996). Prader-Willi syndrome: Genetic, behavioral, and treatment issues. Mental Retardation, 5, 141–153.Google Scholar
- Dykens, E. M., & Lambert, W. (2013). Trajectories of diurnal cortisol in mothers of children with autism and other developmental disabilities: Relations to health and mental health. Journal of Autism and Developmental Disorders, 43(10), 2426–2434. doi: 10.1007/s10803-013-1791-1.CrossRefPubMedPubMedCentralGoogle Scholar
- Glaesmer, H., Grande, G., Braehler, E., & Roth, M. (2011). The German version of the satisfaction with life scale (SWLS): Psychometric properties, validity, and population-based norms. European Journal of Psychological Assessment, 27(2), 127–132. doi: 10.1027/1015-5759/a000058.CrossRefGoogle Scholar
- Hochwälder, J., Marrsson, M., Holmqvist, R., Cullberg, J., & Rosenbaum, B. (2013). Psychometric evaluation of the Danish and Swedish satisfaction with life scale in first episode psychosis patients. Quality of Life Research, 22(3), 537–546. doi: 10.1007/s11136-012-0185-8.CrossRefPubMedGoogle Scholar
- Holm, V. (1981). The diagnosis of Prader-Willi syndrome. In V. Holm, S. Sulzbacher, & P. Pipes (Eds.), Prader-Willi syndrome (pp. 27–44). Baltimore: University Park Press.Google Scholar
- Ihara, H., Ogata, H., Sayama, M., Kato, A., Gito, M., Murakami, N., et al. (2014). QOL in caregivers of Japanese patients with Prader-Willi syndrome with reference to age and genotype. American Journal of Medical Genetics Part A, 164A(9), 2226–2231. doi: 10.1002/ajmg.a.36634.CrossRefPubMedGoogle Scholar
- Kaufman, A., & Kaufman, N. (2004). Kaufman Brief Intelligence Test, second edition (KBIT-2). Circle Pines, MN: American Guidance Service.Google Scholar
- Lanfranchi, S., & Vianello, R. (2012). Stress, locus of control, and family cohesion and adaptability in parents of children with Down, Williams, Fragile X, and Prader-Willi syndromes. American Journal on Intellectual and Developmental Disabilities, 117(3), 207–224. doi: 10.1352/1944-7558-117.3.207.CrossRefPubMedGoogle Scholar
- Mazaheri, M. M., Rae-Seebach, R. D., Preston, H. E., Schmidt, M., Kountz-Edwards, S., Field, N., et al. (2013). The impact of Prader-Willi syndrome on the family’s quality of life and caregiving, and the unaffected siblings’ psychosocial adjustment. Journal of Intellectual Disability Research: JIDR, 57(9), 861–873. doi: 10.1111/j.1365-2788.2012.01634.x.CrossRefPubMedGoogle Scholar
- National Institutes of Health. (2012). Calculate your body mass index. Retrieved from: http://www.nhlbi.nih.gov/guidelines/obesity/BMI/bmicalc.htm.
- Raudenbush, S. W., & Byrk, A. S. (2002). Hierarchical linear models: Applications and data analysis methods (2nd ed.). Newbury Park, CA: Sage.Google Scholar
- Sinnema, M., Boer, H., Collin, P., Maaskant, M. A., van Roozendaal, K. E. P., Schrander-Stumpel, C. T. R. M., & Curfs, L. M. G. (2011a). Psychiatric illness in a cohort of adults with Prader-Willi syndrome. Research in Developmental Disabilities, 32(5), 1729–1735. doi: 10.1016/j.ridd.2011.02.027.CrossRefPubMedGoogle Scholar
- Sparrow, S. S., Cicchetti, D. V., & Balla, D. A. (2005). Vineland adaptive behavior scales (2nd ed.). Circle Pines, MN: AGS Publishing.Google Scholar
- Tvrdik, T., Mason, D., Dent, K. M., Thornton, L., Hornton, S. N., Viskochil, D. H., & Stevenson, D. A. (2015). Stress and coping in parents of children with Prader-Willi syndrome: Assessment of the impact of a structured plan of care. American Journal of Medical Genetics. Part A, 167A(5), 974–982. doi: 10.1002/ajmg.a.36971.CrossRefPubMedGoogle Scholar
- van den Borne, H. W., van Hooren, R. H., van Gestel, M., Rienmeijer, P., Fryns, J. P., & Curfs, L. M. (1999). Psychosocial problems, coping strategies, and the need for information of parents with Prader-Willi syndrome and Angelman syndrome. Patient Education and Counseling, 38, 205–216. doi: 10.1016/S0738-3991(99)00004-X.CrossRefPubMedGoogle Scholar
- Wulffaert, J., Scholte, E. M., & Van Berckalaer-Onnes, I. A. (2010). Maternal parenting stress in families with a child with Angelman syndrome of Prader-Willi syndrome. Journal of Intellectual and Developmental Disability, 35(3), 165–174. doi: 10.3109/13668250.2010.499101.CrossRefPubMedGoogle Scholar