Skip to main content
main-content
Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in: Journal of Autism and Developmental Disorders 9/2015

25-04-2015 | Original Paper

Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome

Auteurs: Rina Cianfaglione, Richard P. Hastings, David Felce, Angus Clarke, Michael P. Kerr

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 9/2015

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Few published studies have reported on the psychological well-being of family members of individuals with Rett syndrome (RTT). Eighty-seven mothers of girls and women with RTT completed a questionnaire survey about their daughters’ behavioral phenotype, current health, and behavior problems, and their own and a sibling’s well-being. Mothers reported increased anxiety but similar levels of depression when compared to a normative sample. Across all problem domains on the Strengths and Difficulties Questionnaire, child and adolescent siblings (n = 39) were reported by mothers to have fewer difficulties than a normative sample. The severity of their daughters’ RTT behavioral phenotype predicted increased anxiety and stress for mothers. Increased RTT daughters’ current health problems predicted more maternal perceptions of positive gain.
Literatuur
go back to reference Amir, R. E., Veyver, I. B., Wan, M., Tran, C. Q., Franckle, U., & Zoghbi, H. Y. (1999). Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG—Binding protein 2. Nature Genetics, 23, 185–187. CrossRefPubMed Amir, R. E., Veyver, I. B., Wan, M., Tran, C. Q., Franckle, U., & Zoghbi, H. Y. (1999). Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG—Binding protein 2. Nature Genetics, 23, 185–187. CrossRefPubMed
go back to reference Benson, P. R., & Karlof, K. L. (2008). Child, parent, and family predictors of latter adjustment in siblings of children with autism. Research in Autism Spectrum Disorders, 2, 583–600. CrossRef Benson, P. R., & Karlof, K. L. (2008). Child, parent, and family predictors of latter adjustment in siblings of children with autism. Research in Autism Spectrum Disorders, 2, 583–600. CrossRef
go back to reference Byiers, B. J., Tervo, R. C., Feyma, T. J., & Symons, F. J. (2014). Seizures and pain uncertainty associated with parenting stress and Rett Syndrome. Journal of Child Neurology, 29, 526–529. PubMedCentralCrossRefPubMed Byiers, B. J., Tervo, R. C., Feyma, T. J., & Symons, F. J. (2014). Seizures and pain uncertainty associated with parenting stress and Rett Syndrome. Journal of Child Neurology, 29, 526–529. PubMedCentralCrossRefPubMed
go back to reference Cianfaglione, R., Clarke, A., Kerr, M., Hastings, R. P., Oliver, O., & Felce, D. (in press). A national survey of Rett syndrome: Age, clinical characteristics, current abilities and health. American Journal of Medical Genetics. Cianfaglione, R., Clarke, A., Kerr, M., Hastings, R. P., Oliver, O., & Felce, D. (in press). A national survey of Rett syndrome: Age, clinical characteristics, current abilities and health. American Journal of Medical Genetics.
go back to reference Crawford, J. R., Henry, J. D., Crombie, C., & Taylor, E. P. (2001). Normative data for the HADS from a large non-clinical sample. British Journal of Clinical Psychology, 40, 429–434. CrossRefPubMed Crawford, J. R., Henry, J. D., Crombie, C., & Taylor, E. P. (2001). Normative data for the HADS from a large non-clinical sample. British Journal of Clinical Psychology, 40, 429–434. CrossRefPubMed
go back to reference Cridland, E. K., Jones, S. C., Magee, C. A., & Caputi, P. (2014). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18, 213–222. CrossRefPubMed Cridland, E. K., Jones, S. C., Magee, C. A., & Caputi, P. (2014). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18, 213–222. CrossRefPubMed
go back to reference Einfeld, S. L., & Tonge, B. J. (1995). The Developmental Behaviour Checklist: The development and validation of an instrument for the assessment of behavioral and emotional disturbance in children and adolescents with mental retardation. Journal of Autism and Developmental Disorders, 25, 81–104. CrossRefPubMed Einfeld, S. L., & Tonge, B. J. (1995). The Developmental Behaviour Checklist: The development and validation of an instrument for the assessment of behavioral and emotional disturbance in children and adolescents with mental retardation. Journal of Autism and Developmental Disorders, 25, 81–104. CrossRefPubMed
go back to reference Einfeld, S. L., & Tonge, B. J. (2002) Manual for the Developmental Behaviour Checklist (2nd edn). School of Psychiatry, University of New South Wales; Centre for Developmental Psychiatry, Monash University. Einfeld, S. L., & Tonge, B. J. (2002) Manual for the Developmental Behaviour Checklist (2nd edn). School of Psychiatry, University of New South Wales; Centre for Developmental Psychiatry, Monash University.
go back to reference Emerson, E., Hatton, C., Llewellyn, G., Blacker, J., & Graham, H. (2006). Socio-economic position, household composition, health status and indicators of the well-being of mothers of children with and without intellectual disabilities. Journal of Intellectual Disability Research, 50, 862–873. CrossRefPubMed Emerson, E., Hatton, C., Llewellyn, G., Blacker, J., & Graham, H. (2006). Socio-economic position, household composition, health status and indicators of the well-being of mothers of children with and without intellectual disabilities. Journal of Intellectual Disability Research, 50, 862–873. CrossRefPubMed
go back to reference Friedrich, W. N., Greenberg, M. T., & Crnic, K. (1983). A short-form of the Questionnaire on Resources and Stress. American Journal of Mental Deficiency, 88, 41–48. PubMed Friedrich, W. N., Greenberg, M. T., & Crnic, K. (1983). A short-form of the Questionnaire on Resources and Stress. American Journal of Mental Deficiency, 88, 41–48. PubMed
go back to reference Glidden, L. M., & Floyd, F. J. (1997). Disaggregating parental depression and family stress in assessing families of children with developmental disabilities: A multisample analysis. American Journal on Mental Retardation, 102, 250–266. CrossRefPubMed Glidden, L. M., & Floyd, F. J. (1997). Disaggregating parental depression and family stress in assessing families of children with developmental disabilities: A multisample analysis. American Journal on Mental Retardation, 102, 250–266. CrossRefPubMed
go back to reference Goodman, R. (1997). The Strengths and Difficulties Questionnaire: A research note. Journal of Child Psychology and Psychiatry, 38, 581–586. CrossRefPubMed Goodman, R. (1997). The Strengths and Difficulties Questionnaire: A research note. Journal of Child Psychology and Psychiatry, 38, 581–586. CrossRefPubMed
go back to reference Goodman, R. (2001). Psychometric properties of the Strengths And Difficulties Questionnaire. Journal of the American Academy of Child and Adolescent Psychiatry, 40, 1337–1345. CrossRefPubMed Goodman, R. (2001). Psychometric properties of the Strengths And Difficulties Questionnaire. Journal of the American Academy of Child and Adolescent Psychiatry, 40, 1337–1345. CrossRefPubMed
go back to reference Goudie, A., Havercamp, S., Jamieson, B., & Sahr, T. (2013). Assessing functional impairment in siblings living with children with disability. Pediatrics, 132, e476–e483. PubMedCentralCrossRefPubMed Goudie, A., Havercamp, S., Jamieson, B., & Sahr, T. (2013). Assessing functional impairment in siblings living with children with disability. Pediatrics, 132, e476–e483. PubMedCentralCrossRefPubMed
go back to reference Griffith, G. M., Hastings, R. P., Oliver, C., Howlin, P., Moss, J., Petty, J., & Tunnicliffe, P. (2011). Psychological well-being in parents of children with Angelman, Cornelia de Lange, and Cri du Chat syndromes. Journal of Intellectual Disability Research, 55, 397–410. CrossRefPubMed Griffith, G. M., Hastings, R. P., Oliver, C., Howlin, P., Moss, J., Petty, J., & Tunnicliffe, P. (2011). Psychological well-being in parents of children with Angelman, Cornelia de Lange, and Cri du Chat syndromes. Journal of Intellectual Disability Research, 55, 397–410. CrossRefPubMed
go back to reference Griffith, G. M., Hastings, R. P., & Petalas, M. A. (2014). Fathers’ and mothers’ ratings of behavioral and emotional problems in siblings of children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 44, 1230–1235. CrossRefPubMed Griffith, G. M., Hastings, R. P., & Petalas, M. A. (2014). Fathers’ and mothers’ ratings of behavioral and emotional problems in siblings of children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 44, 1230–1235. CrossRefPubMed
go back to reference Hall, S. S., Arron, K., Sloneem, J., & Oliver, C. (2008). Health and sleep problems in Cornelia de Lange syndrome: A case control study. Journal of Intellectual Disability Research, 52, 458–468. CrossRefPubMed Hall, S. S., Arron, K., Sloneem, J., & Oliver, C. (2008). Health and sleep problems in Cornelia de Lange syndrome: A case control study. Journal of Intellectual Disability Research, 52, 458–468. CrossRefPubMed
go back to reference Hall, S. S., Burns, D. D., & Reiss, A. L. (2007). Modeling family dynamics in children with Fragile X Syndrome. Journal of Abnormal Child Psychology, 35, 29–42. CrossRefPubMed Hall, S. S., Burns, D. D., & Reiss, A. L. (2007). Modeling family dynamics in children with Fragile X Syndrome. Journal of Abnormal Child Psychology, 35, 29–42. CrossRefPubMed
go back to reference Hartley, S. L., Barker, E. T., Baker, J. K., Seltzer, M. M., & Greenberg, J. S. (2012). Marital satisfaction and life circumstances of grown children with autism across 7 years. Journal of Family Psychology, 26, 688–697. PubMedCentralCrossRefPubMed Hartley, S. L., Barker, E. T., Baker, J. K., Seltzer, M. M., & Greenberg, J. S. (2012). Marital satisfaction and life circumstances of grown children with autism across 7 years. Journal of Family Psychology, 26, 688–697. PubMedCentralCrossRefPubMed
go back to reference Hastings, R. P. (2007). Longitudinal relationships between sibling behavioral adjustment and behavior problems of children with developmental disabilities. Journal of Autism and Developmental Disorders, 37, 1485–1492. CrossRefPubMed Hastings, R. P. (2007). Longitudinal relationships between sibling behavioral adjustment and behavior problems of children with developmental disabilities. Journal of Autism and Developmental Disorders, 37, 1485–1492. CrossRefPubMed
go back to reference Hastings, R. P., Brown, T., Mount, R. H., & Cormack, C. F. M. (2001). Exploration of psychometric properties of the Developmental Behavior Checklist. Journal of Autism and Developmental Disorders, 31, 423–431. CrossRefPubMed Hastings, R. P., Brown, T., Mount, R. H., & Cormack, C. F. M. (2001). Exploration of psychometric properties of the Developmental Behavior Checklist. Journal of Autism and Developmental Disorders, 31, 423–431. CrossRefPubMed
go back to reference Hastings, R. P., Daley, D., Burns, C., & Beck, A. (2006). Maternal distress and Expressed Emotion: Cross-sectional and longitudinal relationships with behavior problems of children with intellectual disabilities. American Journal on Mental Retardation, 111, 48–61. CrossRefPubMed Hastings, R. P., Daley, D., Burns, C., & Beck, A. (2006). Maternal distress and Expressed Emotion: Cross-sectional and longitudinal relationships with behavior problems of children with intellectual disabilities. American Journal on Mental Retardation, 111, 48–61. CrossRefPubMed
go back to reference Hastings, R. P., & Petalas, M. A. (2014). Self-reported behaviour problems and sibling relationship quality by siblings of children with autism spectrum disorder. Child: Care Health and Development, 40, 833–839. Hastings, R. P., & Petalas, M. A. (2014). Self-reported behaviour problems and sibling relationship quality by siblings of children with autism spectrum disorder. Child: Care Health and Development, 40, 833–839.
go back to reference Hastings, R. P., Petalas, M. A., Jones, L., & Totsika, V. (2014). Systems analysis of associations over time between maternal and sibling well-being and behavioral and emotional problems of children with autism. Research in Autism Spectrum Disorders, 8, 1516–1520. CrossRef Hastings, R. P., Petalas, M. A., Jones, L., & Totsika, V. (2014). Systems analysis of associations over time between maternal and sibling well-being and behavioral and emotional problems of children with autism. Research in Autism Spectrum Disorders, 8, 1516–1520. CrossRef
go back to reference Hastings, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107, 116–127. CrossRefPubMed Hastings, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107, 116–127. CrossRefPubMed
go back to reference Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research, 50, 874–882. CrossRefPubMed Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research, 50, 874–882. CrossRefPubMed
go back to reference Jones, L., Hastings, R. P., Totsika, V., Keane, L., & Rhule, N. (2014). Child behavior problems and parental well-being in families of children with autism: The mediating role of mindfulness and acceptance. American Journal on Intellectual and Developmental Disabilities, 119, 171–185. CrossRefPubMed Jones, L., Hastings, R. P., Totsika, V., Keane, L., & Rhule, N. (2014). Child behavior problems and parental well-being in families of children with autism: The mediating role of mindfulness and acceptance. American Journal on Intellectual and Developmental Disabilities, 119, 171–185. CrossRefPubMed
go back to reference Laurvick, C. L., Msall, M. E., Silburn, S., Bower, C., De Klerk, N., & Leonard, H. (2006). Physical and mental health of mothers caring for a child with Rett syndrome. Pediatrics, 118, E1152–E1164. CrossRefPubMed Laurvick, C. L., Msall, M. E., Silburn, S., Bower, C., De Klerk, N., & Leonard, H. (2006). Physical and mental health of mothers caring for a child with Rett syndrome. Pediatrics, 118, E1152–E1164. CrossRefPubMed
go back to reference Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behavior problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50, 172–183. CrossRefPubMed Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behavior problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50, 172–183. CrossRefPubMed
go back to reference Lim, F., Downs, J., Jianghong, L., Xin-Hua, B., & Leonard, H. (2013). Caring for a child with severe intellectual disability in China: The example of Rett Syndrome. Disability and Rehabilitation, 35, 343–351. CrossRefPubMed Lim, F., Downs, J., Jianghong, L., Xin-Hua, B., & Leonard, H. (2013). Caring for a child with severe intellectual disability in China: The example of Rett Syndrome. Disability and Rehabilitation, 35, 343–351. CrossRefPubMed
go back to reference Meltzer, H., Gatward, R., Goodman, R., & Ford, F. (2000). Mental health of children and adolescence in Great Britain. London: HMSO. Meltzer, H., Gatward, R., Goodman, R., & Ford, F. (2000). Mental health of children and adolescence in Great Britain. London: HMSO.
go back to reference Mount, R. H., Charman, T., Hastings, R. P., Reilly, S., & Cass, H. (2002). The Rett Syndrome Behaviour Questionnaire (RSBQ): Refining the behavioural phenotype of Rett syndrome. Journal of Child Psychology and Psychiatry, 43, 1099–1110. CrossRefPubMed Mount, R. H., Charman, T., Hastings, R. P., Reilly, S., & Cass, H. (2002). The Rett Syndrome Behaviour Questionnaire (RSBQ): Refining the behavioural phenotype of Rett syndrome. Journal of Child Psychology and Psychiatry, 43, 1099–1110. CrossRefPubMed
go back to reference Mulroy, S., Robertson, L., Aiberti, K., Leonard, H., & Bower, C. (2008). The impact of having a sibling with an intellectual disability: Parental perspectives in two disorders. Journal of Intellectual Disability Research, 52, 216–229. CrossRefPubMed Mulroy, S., Robertson, L., Aiberti, K., Leonard, H., & Bower, C. (2008). The impact of having a sibling with an intellectual disability: Parental perspectives in two disorders. Journal of Intellectual Disability Research, 52, 216–229. CrossRefPubMed
go back to reference Neely-Barnes, S. L., & Graff, J. C. (2011). Are there adverse consequences to being a sibling of a person with a disability? A propensity score analysis. Family Relations, 60, 331–341. CrossRef Neely-Barnes, S. L., & Graff, J. C. (2011). Are there adverse consequences to being a sibling of a person with a disability? A propensity score analysis. Family Relations, 60, 331–341. CrossRef
go back to reference Neul, J. L., Kaufmann, W., Glaze, D. G., Christodoulou, J., Clarke, A. J., Bahi-Buisson, N., et al. (2010). Rett syndrome: revised diagnostic criteria and nomenclature. Annals of Neurology, 68, 944–950. PubMedCentralCrossRefPubMed Neul, J. L., Kaufmann, W., Glaze, D. G., Christodoulou, J., Clarke, A. J., Bahi-Buisson, N., et al. (2010). Rett syndrome: revised diagnostic criteria and nomenclature. Annals of Neurology, 68, 944–950. PubMedCentralCrossRefPubMed
go back to reference Perry, A., Sarlo-Mcgarvey, N., & Factor, D. C. (1992). Stress and family functioning in parents of girls with Rett syndrome. Journal of Autism and Developmental Disorders, 22, 235–248. CrossRefPubMed Perry, A., Sarlo-Mcgarvey, N., & Factor, D. C. (1992). Stress and family functioning in parents of girls with Rett syndrome. Journal of Autism and Developmental Disorders, 22, 235–248. CrossRefPubMed
go back to reference Pit-ten Cate, I. M. (2003). Family adjustment to disability and chronic illness in children. Unpublished doctoral thesis, University of Southampton. Pit-ten Cate, I. M. (2003). Family adjustment to disability and chronic illness in children. Unpublished doctoral thesis, University of Southampton.
go back to reference Seligman, M., & Darling, R. B. (2009). Ordinary families, special children: A systems approach to childhood disability. New York, NY: The Guilford Press. Seligman, M., & Darling, R. B. (2009). Ordinary families, special children: A systems approach to childhood disability. New York, NY: The Guilford Press.
go back to reference Totsika, V., Hastings, R. P., Emerson, E., Berridge, D. M., & Lancaster, G. A. (2011a). Behavior problems at five years of age and maternal mental health in autism and intellectual disability. Journal of Abnormal Child Psychology, 39, 1137–1147. CrossRefPubMed Totsika, V., Hastings, R. P., Emerson, E., Berridge, D. M., & Lancaster, G. A. (2011a). Behavior problems at five years of age and maternal mental health in autism and intellectual disability. Journal of Abnormal Child Psychology, 39, 1137–1147. CrossRefPubMed
go back to reference Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G. A., & Berridge, D. M. (2011b). A population-based investigation of behavioural and emotional problems and maternal mental health: Associations with autism and intellectual disability. Journal of Child Psychology and Psychiatry, 52, 91–99. CrossRefPubMed Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G. A., & Berridge, D. M. (2011b). A population-based investigation of behavioural and emotional problems and maternal mental health: Associations with autism and intellectual disability. Journal of Child Psychology and Psychiatry, 52, 91–99. CrossRefPubMed
go back to reference Urbanowicz, A., Downs, J., Bebbington, A., Jacoby, P., Girdler, S., & Leonard, H. (2011). Use of equipment and respite services and caregiver health among Australian families living with Rett syndrome. Research in Autism Spectrum Disorders, 5, 722–732. CrossRef Urbanowicz, A., Downs, J., Bebbington, A., Jacoby, P., Girdler, S., & Leonard, H. (2011). Use of equipment and respite services and caregiver health among Australian families living with Rett syndrome. Research in Autism Spectrum Disorders, 5, 722–732. CrossRef
go back to reference Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370. CrossRefPubMed Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370. CrossRefPubMed
Metagegevens
Titel
Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome
Auteurs
Rina Cianfaglione
Richard P. Hastings
David Felce
Angus Clarke
Michael P. Kerr
Publicatiedatum
25-04-2015
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 9/2015
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-015-2457-y