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Published in: Health and Quality of Life Outcomes 1/2006

Open Access 01-12-2006 | Research

Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism

Authors: Hiie Allik, Jan-Olov Larsson, Hans Smedje

Published in: Health and Quality of Life Outcomes | Issue 1/2006

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Abstract

Background

The estimated prevalence rate of Pervasive Developmental Disorders (PDD) in children is 6 per 1.000. Parenting children who are intellectually impaired and have PDDs is known to be linked to the impaired well-being of the parents themselves. However, there is still little available data on health-related quality of life (HRQL) in parents of children with Asperger Syndrome (AS) and High-Functioning Autism (HFA), or other PDD diagnoses in children of normal intelligence. The present study aimed to evaluate aspects of HRQL in parents of school-age children with AS/HFA and the correlates with child behaviour characteristics.

Methods

The sample consisted of 31 mothers and 30 fathers of 32 children with AS/HFA and 30 mothers and 29 fathers of 32 age and gender matched children with typical development. Parental HRQL was surveyed by the use of the 12 Item Short Form Health Survey (SF-12) which measures physical and mental well-being. The child behaviour characteristics were assessed using the structured questionnaires: The High-Functioning Autism Spectrum Screening Questionnaire (ASSQ) and The Strengths and Difficulties Questionnaire (SDQ).

Results

The mothers of children with AS/HFA had lower SF-12 scores than the controls, indicating poorer physical health. The mothers of children with AS/HFA also had lower physical SF-12 scores compared to the fathers. In the AS/HFA group, maternal health was related to behaviour problems such as hyperactivity and conduct problems in the child.

Conclusion

Mothers but not fathers of children with AS/HFA reported impaired HRQL, and there was a relationship between maternal well-being and child behaviour characteristics.
Literature
1.
go back to reference Rutter M: Incidence of autism spectrum disorders: Changes over time and their meaning. Acta Paediatr 2005, 94: 2–15. 10.1080/08035250410023124PubMedCrossRef Rutter M: Incidence of autism spectrum disorders: Changes over time and their meaning. Acta Paediatr 2005, 94: 2–15. 10.1080/08035250410023124PubMedCrossRef
2.
go back to reference Fombonne E, Simmons H, Ford T, Meltzer H, Goodman R: Prevalence of pervasive developmental disorders in the British nationwide survey of child mental health. J Am Acad Child Adolesc Psychiatry 2001, 40: 820–827. 10.1097/00004583-200107000-00017PubMedCrossRef Fombonne E, Simmons H, Ford T, Meltzer H, Goodman R: Prevalence of pervasive developmental disorders in the British nationwide survey of child mental health. J Am Acad Child Adolesc Psychiatry 2001, 40: 820–827. 10.1097/00004583-200107000-00017PubMedCrossRef
3.
go back to reference Webb E, Morey J, Thompsen W, Butler C, Barber M, Fraser WI: Prevalence of autistic spectrum disorder in children attending mainstream schools in a Welsh education authority. Developmental Medicine and Child Neurology 2003, 45: 377–384. 10.1017/S0012162203000720PubMedCrossRef Webb E, Morey J, Thompsen W, Butler C, Barber M, Fraser WI: Prevalence of autistic spectrum disorder in children attending mainstream schools in a Welsh education authority. Developmental Medicine and Child Neurology 2003, 45: 377–384. 10.1017/S0012162203000720PubMedCrossRef
4.
go back to reference Willemsen-Swinkels SH, Buitelaar JK: The autistic spectrum: subgroups, boundaries, and treatment. Psychiatr Clin North Am 2002, 25: 811–836. 10.1016/S0193-953X(02)00020-5PubMedCrossRef Willemsen-Swinkels SH, Buitelaar JK: The autistic spectrum: subgroups, boundaries, and treatment. Psychiatr Clin North Am 2002, 25: 811–836. 10.1016/S0193-953X(02)00020-5PubMedCrossRef
5.
go back to reference American Psychiatric Association: Diagnostic and statistical manual of mental disorders : DSM-IV-TR. 4.th edition. Washington, DC, Author; 2000. American Psychiatric Association: Diagnostic and statistical manual of mental disorders : DSM-IV-TR. 4.th edition. Washington, DC, Author; 2000.
6.
go back to reference Little L: Differences in stress and coping for mothers and fathers of children with Asperger's syndrome and nonverbal learning disorders. Pediatr Nurs 2002, 28: 565–570.PubMed Little L: Differences in stress and coping for mothers and fathers of children with Asperger's syndrome and nonverbal learning disorders. Pediatr Nurs 2002, 28: 565–570.PubMed
7.
go back to reference Weiss SJ: Stressors experienced by family caregivers of children with pervasive developmental disorders. Child Psychiatry Hum Dev 1991, 21: 203–216. 10.1007/BF00705906PubMedCrossRef Weiss SJ: Stressors experienced by family caregivers of children with pervasive developmental disorders. Child Psychiatry Hum Dev 1991, 21: 203–216. 10.1007/BF00705906PubMedCrossRef
8.
go back to reference Fisman S, Wolf L: The handicapped child: psychological effects of parental, marital, and sibling relationships. Psychiatr Clin North Am 1991, 14: 199–217.PubMed Fisman S, Wolf L: The handicapped child: psychological effects of parental, marital, and sibling relationships. Psychiatr Clin North Am 1991, 14: 199–217.PubMed
9.
go back to reference Holroyd J, McArthur D: Mental retardation and stress on the parents: a contrast between Down's syndrome and childhood autism. Am J Ment Defic 1976, 80: 431–436.PubMed Holroyd J, McArthur D: Mental retardation and stress on the parents: a contrast between Down's syndrome and childhood autism. Am J Ment Defic 1976, 80: 431–436.PubMed
10.
go back to reference Wolf LC, Noh S, Fisman SN, Speechley M: Psychological effects of parenting stress on parents of autistic children. J Autism Dev Disord 1989, 19: 157–166. 10.1007/BF02212727PubMedCrossRef Wolf LC, Noh S, Fisman SN, Speechley M: Psychological effects of parenting stress on parents of autistic children. J Autism Dev Disord 1989, 19: 157–166. 10.1007/BF02212727PubMedCrossRef
11.
go back to reference Dyson LL: Fathers and mothers of school-age children with developmental disabilities: parental stress, family functioning, and social support. Am J Ment Retard 1997, 102: 267–279. 10.1352/0895-8017(1997)102<0267:FAMOSC>2.0.CO;2PubMedCrossRef Dyson LL: Fathers and mothers of school-age children with developmental disabilities: parental stress, family functioning, and social support. Am J Ment Retard 1997, 102: 267–279. 10.1352/0895-8017(1997)102<0267:FAMOSC>2.0.CO;2PubMedCrossRef
12.
go back to reference Hedov G, Anneren G, Wikblad K: Self-perceived health in Swedish parents of children with Down's syndrome. Qual Life Res 2000, 9: 415–422. 10.1023/A:1008910527481PubMedCrossRef Hedov G, Anneren G, Wikblad K: Self-perceived health in Swedish parents of children with Down's syndrome. Qual Life Res 2000, 9: 415–422. 10.1023/A:1008910527481PubMedCrossRef
13.
go back to reference Emerson E: Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the child's difficulties. J Intellect Disabil Res 2003, 47: 385–399. 10.1046/j.1365-2788.2003.00498.xPubMedCrossRef Emerson E: Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the child's difficulties. J Intellect Disabil Res 2003, 47: 385–399. 10.1046/j.1365-2788.2003.00498.xPubMedCrossRef
14.
go back to reference Seltzer MM, Greenberg JS, Floyd FJ, Pettee Y, Hong J: Life course impacts of parenting a child with a disability. Am J Ment Retard 2001, 106: 265–286. 10.1352/0895-8017(2001)106<0265:LCIOPA>2.0.CO;2PubMedCrossRef Seltzer MM, Greenberg JS, Floyd FJ, Pettee Y, Hong J: Life course impacts of parenting a child with a disability. Am J Ment Retard 2001, 106: 265–286. 10.1352/0895-8017(2001)106<0265:LCIOPA>2.0.CO;2PubMedCrossRef
15.
go back to reference Magana SM, Greenberg JS, Seltzer MM: The health and well-being of black mothers who care for their adult children with schizophrenia. Psychiatr Serv 2004, 55: 711–713. 10.1176/appi.ps.55.6.711PubMedCentralPubMedCrossRef Magana SM, Greenberg JS, Seltzer MM: The health and well-being of black mothers who care for their adult children with schizophrenia. Psychiatr Serv 2004, 55: 711–713. 10.1176/appi.ps.55.6.711PubMedCentralPubMedCrossRef
16.
go back to reference Hastings RP, Brown T: Behavior problems of children with autism, parental self-efficacy, and mental health. Am J Ment Retard 2002, 107: 222–232. 10.1352/0895-8017(2002)107<0222:BPOCWA>2.0.CO;2PubMedCrossRef Hastings RP, Brown T: Behavior problems of children with autism, parental self-efficacy, and mental health. Am J Ment Retard 2002, 107: 222–232. 10.1352/0895-8017(2002)107<0222:BPOCWA>2.0.CO;2PubMedCrossRef
17.
go back to reference Hastings RP: Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children with autism. J Intellect Disabil Res 2003, 47: 231–237. 10.1046/j.1365-2788.2003.00485.xPubMedCrossRef Hastings RP: Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children with autism. J Intellect Disabil Res 2003, 47: 231–237. 10.1046/j.1365-2788.2003.00485.xPubMedCrossRef
18.
go back to reference Freeman NL, Perry A, Factor DC: Child behaviours as stressors: replicating and extending the use of the CARS as a measure of stress: a research note. J Child Psychol Psychiatry 1991, 32: 1025–1030.PubMedCrossRef Freeman NL, Perry A, Factor DC: Child behaviours as stressors: replicating and extending the use of the CARS as a measure of stress: a research note. J Child Psychol Psychiatry 1991, 32: 1025–1030.PubMedCrossRef
19.
go back to reference Hastings RP: Parental stress and behaviour problems of children with developmental disability. J Intellect & Dev Disability 2002, 27: 149–160. 10.1080/1366825021000008657CrossRef Hastings RP: Parental stress and behaviour problems of children with developmental disability. J Intellect & Dev Disability 2002, 27: 149–160. 10.1080/1366825021000008657CrossRef
20.
go back to reference Ghaziuddin M, Weidmer-Mikhail E, Ghaziuddin N: Comorbidity of Asperger syndrome: a preliminary report. J Intellect Disabil Res 1998, 42 ( Pt 4): 279–283. Ghaziuddin M, Weidmer-Mikhail E, Ghaziuddin N: Comorbidity of Asperger syndrome: a preliminary report. J Intellect Disabil Res 1998, 42 ( Pt 4): 279–283.
21.
go back to reference Kim JA, Szatmari P, Bryson SE, Streiner DL, Wilson FJ: The prevalence of anxiety and mood problems among children with autism and Asperger syndrome. Autism 2000, 4: 117–132. 10.1177/1362361300004002002CrossRef Kim JA, Szatmari P, Bryson SE, Streiner DL, Wilson FJ: The prevalence of anxiety and mood problems among children with autism and Asperger syndrome. Autism 2000, 4: 117–132. 10.1177/1362361300004002002CrossRef
22.
go back to reference Tonge BJ: Behavioural and emotional disturbance in high-functioning autism and Asperger syndrome. Autism 1999, 3: 117–130. 10.1177/1362361399003002003CrossRef Tonge BJ: Behavioural and emotional disturbance in high-functioning autism and Asperger syndrome. Autism 1999, 3: 117–130. 10.1177/1362361399003002003CrossRef
23.
go back to reference Allik H, Larsson JO, Smedje H: Sleep patterns of school-age children with Asperger syndrome or high-functioning autism. J Autism Dev Disord, in press. Allik H, Larsson JO, Smedje H: Sleep patterns of school-age children with Asperger syndrome or high-functioning autism. J Autism Dev Disord, in press.
24.
go back to reference Mindell JA, Owens JA: Sleep and Medications. In A Clinical Guide to Pediatric Sleep Diagnosis and Management of Sleep Problems. Philadelphia, Lippincott Williams & Wilkins.; 2003:169–182. Mindell JA, Owens JA: Sleep and Medications. In A Clinical Guide to Pediatric Sleep Diagnosis and Management of Sleep Problems. Philadelphia, Lippincott Williams & Wilkins.; 2003:169–182.
25.
go back to reference Mindell JA, Owens JA: Sleep and Medical Disorders. In A Clinical Guide to Pediatric Sleep Diagnosis and Management of Sleep Problems. Philadelphia, Lippincott Williams & Wilkins.; 2003:191–204. Mindell JA, Owens JA: Sleep and Medical Disorders. In A Clinical Guide to Pediatric Sleep Diagnosis and Management of Sleep Problems. Philadelphia, Lippincott Williams & Wilkins.; 2003:191–204.
26.
go back to reference World Health Organization: The ICD-10 classification of mental and behavioural disorders: Diagnostic criteria for research. Geneva, WHO; 1993. World Health Organization: The ICD-10 classification of mental and behavioural disorders: Diagnostic criteria for research. Geneva, WHO; 1993.
27.
go back to reference Ware JJ, Kosinski M, Keller SD: A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care 1996, 34: 220–233. 10.1097/00005650-199603000-00003PubMedCrossRef Ware JJ, Kosinski M, Keller SD: A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care 1996, 34: 220–233. 10.1097/00005650-199603000-00003PubMedCrossRef
28.
go back to reference Gandek B, Ware JE, Aaronson NK, Apolone G, Bjorner JB, Brazier JE, Bullinger M, Kaasa S, Leplege A, Prieto L, Sullivan M: Cross-validation of item selection and scoring for the SF-12 Health Survey in nine countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol 1998, 51: 1171–1178. 10.1016/S0895-4356(98)00109-7PubMedCrossRef Gandek B, Ware JE, Aaronson NK, Apolone G, Bjorner JB, Brazier JE, Bullinger M, Kaasa S, Leplege A, Prieto L, Sullivan M: Cross-validation of item selection and scoring for the SF-12 Health Survey in nine countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol 1998, 51: 1171–1178. 10.1016/S0895-4356(98)00109-7PubMedCrossRef
29.
go back to reference Morimoto T, Schreiner AS, Asano H: Caregiver burden and health-related quality of life among Japanese stroke caregivers. Age Ageing 2003, 32: 218–223. 10.1093/ageing/32.2.218PubMedCrossRef Morimoto T, Schreiner AS, Asano H: Caregiver burden and health-related quality of life among Japanese stroke caregivers. Age Ageing 2003, 32: 218–223. 10.1093/ageing/32.2.218PubMedCrossRef
30.
go back to reference Hartnick CJ, Bissell C, Parsons SK: The impact of pediatric tracheotomy on parental caregiver burden and health status. Arch Otolaryngol Head Neck Surg 2003, 129: 1065–1069. 10.1001/archotol.129.10.1065PubMedCrossRef Hartnick CJ, Bissell C, Parsons SK: The impact of pediatric tracheotomy on parental caregiver burden and health status. Arch Otolaryngol Head Neck Surg 2003, 129: 1065–1069. 10.1001/archotol.129.10.1065PubMedCrossRef
31.
go back to reference Sullivan M, Karlsson J, Taft C: SF-12. Hälsoenkät. Svensk manual (SF-12 Health Survey. Swedish manual). Göteborg, Health Care Research Unit, Medical Faculty, Gothenburg University.; 1997. Sullivan M, Karlsson J, Taft C: SF-12. Hälsoenkät. Svensk manual (SF-12 Health Survey. Swedish manual). Göteborg, Health Care Research Unit, Medical Faculty, Gothenburg University.; 1997.
32.
go back to reference Ehlers S, Gillberg C, Wing L: A screening questionnaire for Asperger syndrome and other high-functioning autism spectrum disorders in school age children. J Autism Dev Disord 1999, 29: 129–141. 10.1023/A:1023040610384PubMedCrossRef Ehlers S, Gillberg C, Wing L: A screening questionnaire for Asperger syndrome and other high-functioning autism spectrum disorders in school age children. J Autism Dev Disord 1999, 29: 129–141. 10.1023/A:1023040610384PubMedCrossRef
33.
go back to reference Goodman R: Psychometric properties of the strengths and difficulties questionnaire. J Am Acad Child Adolesc Psychiatry 2001, 40: 1337–1345. 10.1097/00004583-200111000-00015PubMedCrossRef Goodman R: Psychometric properties of the strengths and difficulties questionnaire. J Am Acad Child Adolesc Psychiatry 2001, 40: 1337–1345. 10.1097/00004583-200111000-00015PubMedCrossRef
34.
go back to reference Smedje H, Broman JE, Hetta J, von Knorring AL: Psychometric properties of a Swedish version of the "Strengths and Difficulties Questionnaire". Eur Child Adolesc Psychiatry 1999, 8: 63–70. 10.1007/s007870050086PubMedCrossRef Smedje H, Broman JE, Hetta J, von Knorring AL: Psychometric properties of a Swedish version of the "Strengths and Difficulties Questionnaire". Eur Child Adolesc Psychiatry 1999, 8: 63–70. 10.1007/s007870050086PubMedCrossRef
35.
go back to reference Malmberg M, Rydell AM, Smedje H: Validity of the Swedish version of the Strengths and Difficulties Questionnaire (SDQ-Swe). Nordic Journal of Psychiatry 2003, 57: 357–363. 10.1080/08039480310002697PubMedCrossRef Malmberg M, Rydell AM, Smedje H: Validity of the Swedish version of the Strengths and Difficulties Questionnaire (SDQ-Swe). Nordic Journal of Psychiatry 2003, 57: 357–363. 10.1080/08039480310002697PubMedCrossRef
36.
go back to reference Lim LL, Fisher JD: Use of the 12-item short-form (SF-12) Health Survey in an Australian heart and stroke population. Qual Life Res 1999, 8: 1–8. 10.1023/A:1026409226544PubMedCrossRef Lim LL, Fisher JD: Use of the 12-item short-form (SF-12) Health Survey in an Australian heart and stroke population. Qual Life Res 1999, 8: 1–8. 10.1023/A:1026409226544PubMedCrossRef
37.
go back to reference Stata User's Guide[Computer program manual] College Station, Stata Press, Texas; 1999. Stata User's Guide[Computer program manual] College Station, Stata Press, Texas; 1999.
38.
go back to reference Walters SJ, Campbell MJ: The use of bootstrap methods for analysing Health-Related Quality of Life outcomes (particularly the SF-36). Health Qual Life Outcomes 2004, 2: 70. 10.1186/1477-7525-2-70PubMedCentralPubMedCrossRef Walters SJ, Campbell MJ: The use of bootstrap methods for analysing Health-Related Quality of Life outcomes (particularly the SF-36). Health Qual Life Outcomes 2004, 2: 70. 10.1186/1477-7525-2-70PubMedCentralPubMedCrossRef
39.
go back to reference SPSS base 9.0 : User's guide Chicago, Ill., SPSS Inc.; 1999. SPSS base 9.0 : User's guide Chicago, Ill., SPSS Inc.; 1999.
40.
go back to reference Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swinton M, O'Donnell M, Rosenbaum P: The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics 2004, 114: e182–91. 10.1542/peds.114.2.e182PubMedCrossRef Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swinton M, O'Donnell M, Rosenbaum P: The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics 2004, 114: e182–91. 10.1542/peds.114.2.e182PubMedCrossRef
41.
go back to reference Sweeten TL, Bowyer SL, Posey DJ, Halberstadt GM, McDougle CJ: Increased prevalence of familial autoimmunity in probands with pervasive developmental disorders. Pediatrics 2003, 112: e420. 10.1542/peds.112.5.e420PubMedCrossRef Sweeten TL, Bowyer SL, Posey DJ, Halberstadt GM, McDougle CJ: Increased prevalence of familial autoimmunity in probands with pervasive developmental disorders. Pediatrics 2003, 112: e420. 10.1542/peds.112.5.e420PubMedCrossRef
42.
go back to reference Olsson MB, Hwang CP: Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res 2001, 45: 535–543. 10.1046/j.1365-2788.2001.00372.xPubMedCrossRef Olsson MB, Hwang CP: Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res 2001, 45: 535–543. 10.1046/j.1365-2788.2001.00372.xPubMedCrossRef
43.
go back to reference Grabe HJ, Spitzer C, Freyberger HJ: Alexithymia and the temperament and character model of personality. Psychother Psychosom 2001, 70: 261–267. 10.1159/000056264PubMedCrossRef Grabe HJ, Spitzer C, Freyberger HJ: Alexithymia and the temperament and character model of personality. Psychother Psychosom 2001, 70: 261–267. 10.1159/000056264PubMedCrossRef
44.
go back to reference Lipsanen T, Saarijarvi S, Lauerma H: Exploring the relations between depression, somatization, dissociation and alexithymia--overlapping or independent constructs? Psychopathology 2004, 37: 200–206. 10.1159/000080132PubMedCrossRef Lipsanen T, Saarijarvi S, Lauerma H: Exploring the relations between depression, somatization, dissociation and alexithymia--overlapping or independent constructs? Psychopathology 2004, 37: 200–206. 10.1159/000080132PubMedCrossRef
45.
go back to reference Tani P, Lindberg N, Joukamaa M, Nieminen-von Wendt T, von Wendt L, Appelberg B, Rimon R, Porkka-Heiskanen T: Asperger syndrome, alexithymia and perception of sleep. Neuropsychobiology 2004, 49: 64–70. 10.1159/000076412PubMedCrossRef Tani P, Lindberg N, Joukamaa M, Nieminen-von Wendt T, von Wendt L, Appelberg B, Rimon R, Porkka-Heiskanen T: Asperger syndrome, alexithymia and perception of sleep. Neuropsychobiology 2004, 49: 64–70. 10.1159/000076412PubMedCrossRef
Metadata
Title
Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism
Authors
Hiie Allik
Jan-Olov Larsson
Hans Smedje
Publication date
01-12-2006
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2006
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-4-1

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