Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome
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 the...
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| Veröffentlicht in: | Journal of autism and developmental disorders 2015-09, Vol.45 (9), p.2939-2946 |
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| creator | Cianfaglione, Rina Hastings, Richard P. Felce, David Clarke, Angus Kerr, Michael P. |
| description | 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. |
| doi_str_mv | 10.1007/s10803-015-2457-y |
| format | Article |
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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.</description><identifier>ISSN: 0162-3257</identifier><identifier>EISSN: 1573-3432</identifier><identifier>DOI: 10.1007/s10803-015-2457-y</identifier><identifier>PMID: 25911307</identifier><identifier>CODEN: JADDDQ</identifier><language>eng</language><publisher>New York: Springer US</publisher><subject>Adolescent ; Adolescents ; Adult ; Anxiety ; Autism ; Behavior ; Behavior Problems ; Behavioral Science and Psychology ; Care and treatment ; Child ; Child and School Psychology ; Child Welfare ; Children ; Children & youth ; Comparative Analysis ; Complications and side effects ; Daughters ; Demographic aspects ; Depression (Mood disorder) ; Depression (Psychology) ; Developmental disabilities ; Disability ; Educational Development ; Families & family life ; Female ; Genetic Disorders ; Genotype & phenotype ; Humans ; Mental Health ; Mothers ; Mothers - psychology ; Mutation ; Neurosciences ; Original Paper ; Parents & parenting ; Pediatrics ; Physical Health ; Predictor Variables ; Psychological aspects ; Psychology ; Public Health ; Questionnaires ; Rett syndrome ; Rett Syndrome - genetics ; Rett Syndrome - psychology ; Risk factors ; Severity (of Disability) ; Siblings ; Siblings - psychology ; Strengths and Difficulties Questionnaire ; Stress ; Surveys ; Well Being</subject><ispartof>Journal of autism and developmental disorders, 2015-09, Vol.45 (9), p.2939-2946</ispartof><rights>Springer Science+Business Media New York 2015</rights><rights>COPYRIGHT 2015 Springer</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c636t-2eb1dede275158925867fb68f9959f325f049fff8f988f8f402630f5815a9b6d3</citedby><cites>FETCH-LOGICAL-c636t-2eb1dede275158925867fb68f9959f325f049fff8f988f8f402630f5815a9b6d3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s10803-015-2457-y$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s10803-015-2457-y$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>314,780,784,12846,27924,27925,30999,41488,42557,51319</link.rule.ids><backlink>$$Uhttp://eric.ed.gov/ERICWebPortal/detail?accno=EJ1073012$$DView record in ERIC$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/25911307$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Cianfaglione, Rina</creatorcontrib><creatorcontrib>Hastings, Richard P.</creatorcontrib><creatorcontrib>Felce, David</creatorcontrib><creatorcontrib>Clarke, Angus</creatorcontrib><creatorcontrib>Kerr, Michael P.</creatorcontrib><title>Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome</title><title>Journal of autism and developmental disorders</title><addtitle>J Autism Dev Disord</addtitle><addtitle>J Autism Dev Disord</addtitle><description>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.</description><subject>Adolescent</subject><subject>Adolescents</subject><subject>Adult</subject><subject>Anxiety</subject><subject>Autism</subject><subject>Behavior</subject><subject>Behavior Problems</subject><subject>Behavioral Science and Psychology</subject><subject>Care and treatment</subject><subject>Child</subject><subject>Child and School Psychology</subject><subject>Child Welfare</subject><subject>Children</subject><subject>Children & youth</subject><subject>Comparative Analysis</subject><subject>Complications and side effects</subject><subject>Daughters</subject><subject>Demographic aspects</subject><subject>Depression (Mood disorder)</subject><subject>Depression (Psychology)</subject><subject>Developmental disabilities</subject><subject>Disability</subject><subject>Educational Development</subject><subject>Families & family life</subject><subject>Female</subject><subject>Genetic Disorders</subject><subject>Genotype & phenotype</subject><subject>Humans</subject><subject>Mental Health</subject><subject>Mothers</subject><subject>Mothers - psychology</subject><subject>Mutation</subject><subject>Neurosciences</subject><subject>Original Paper</subject><subject>Parents & parenting</subject><subject>Pediatrics</subject><subject>Physical Health</subject><subject>Predictor Variables</subject><subject>Psychological aspects</subject><subject>Psychology</subject><subject>Public Health</subject><subject>Questionnaires</subject><subject>Rett syndrome</subject><subject>Rett Syndrome - genetics</subject><subject>Rett Syndrome - psychology</subject><subject>Risk factors</subject><subject>Severity (of Disability)</subject><subject>Siblings</subject><subject>Siblings - psychology</subject><subject>Strengths and Difficulties Questionnaire</subject><subject>Stress</subject><subject>Surveys</subject><subject>Well Being</subject><issn>0162-3257</issn><issn>1573-3432</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2015</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><sourceid>8G5</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><sourceid>GUQSH</sourceid><sourceid>M2O</sourceid><recordid>eNqNkkFv1DAQhSMEokvhB3AAReICh5SxHSf2sVRtKSoCdUE9Wk4yzrpK7NbOCvbf4yWlsKhIyJItvffNWDN6WfacwAEBqN9GAgJYAYQXtOR1sXmQLQivWcFKRh9mCyAVLRjl9V72JMYrAJCC0sfZHuWSEAb1Ims-x0278oPvbauH_BKHoXiH1vW5N_lHP60wxFy7Ll_aZkhyzK3LT_RoB4txy5zaMMzEpR_R5d_stMovcJry5cZ1IWlPs0dGDxGf3b772deT4y9H74vzT6dnR4fnRVuxaiooNqTDDmnNCReSclHVpqmEkZJLk6YwUEpjTBKESHcJtGJguCBcy6bq2H72eu57HfzNGuOkRhvbNJB26NdRkZpSUgsK7D9QEEIKzrfoq7_QK78OLg3yk4KSVbT8TfV6QGWd8VPQ7bapOixpTbgECYkq7qF6dBj04B0am-Qd_uAePp0OR9veW_BmpyAxE36fer2OUZ0tL3ZZMrNt8DEGNOo62FGHjSKgtvFSc7xUipfaxkttUs3L22WsmxG7u4pfeUrAixnAYNs7-_gDSR4Qmnw6-zF5rsfwxzb_-esPp3PfFg</recordid><startdate>20150901</startdate><enddate>20150901</enddate><creator>Cianfaglione, Rina</creator><creator>Hastings, Richard P.</creator><creator>Felce, David</creator><creator>Clarke, Angus</creator><creator>Kerr, Michael P.</creator><general>Springer US</general><general>Springer</general><general>Springer Nature B.V</general><scope>7SW</scope><scope>BJH</scope><scope>BNH</scope><scope>BNI</scope><scope>BNJ</scope><scope>BNO</scope><scope>ERI</scope><scope>PET</scope><scope>REK</scope><scope>WWN</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>ISR</scope><scope>0-V</scope><scope>3V.</scope><scope>7QJ</scope><scope>7RV</scope><scope>7TK</scope><scope>7X7</scope><scope>7XB</scope><scope>88B</scope><scope>88E</scope><scope>88G</scope><scope>88J</scope><scope>8A4</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>8G5</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>CJNVE</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>GUQSH</scope><scope>HEHIP</scope><scope>K9-</scope><scope>K9.</scope><scope>KB0</scope><scope>M0P</scope><scope>M0R</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>M2O</scope><scope>M2R</scope><scope>M2S</scope><scope>MBDVC</scope><scope>NAPCQ</scope><scope>PQEDU</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>7X8</scope></search><sort><creationdate>20150901</creationdate><title>Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome</title><author>Cianfaglione, Rina ; Hastings, Richard P. ; Felce, David ; Clarke, Angus ; Kerr, Michael P.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c636t-2eb1dede275158925867fb68f9959f325f049fff8f988f8f402630f5815a9b6d3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2015</creationdate><topic>Adolescent</topic><topic>Adolescents</topic><topic>Adult</topic><topic>Anxiety</topic><topic>Autism</topic><topic>Behavior</topic><topic>Behavior Problems</topic><topic>Behavioral Science and Psychology</topic><topic>Care and treatment</topic><topic>Child</topic><topic>Child and School Psychology</topic><topic>Child Welfare</topic><topic>Children</topic><topic>Children & youth</topic><topic>Comparative Analysis</topic><topic>Complications and side effects</topic><topic>Daughters</topic><topic>Demographic aspects</topic><topic>Depression (Mood disorder)</topic><topic>Depression (Psychology)</topic><topic>Developmental disabilities</topic><topic>Disability</topic><topic>Educational Development</topic><topic>Families & family life</topic><topic>Female</topic><topic>Genetic Disorders</topic><topic>Genotype & phenotype</topic><topic>Humans</topic><topic>Mental Health</topic><topic>Mothers</topic><topic>Mothers - 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Academic</collection><jtitle>Journal of autism and developmental disorders</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Cianfaglione, Rina</au><au>Hastings, Richard P.</au><au>Felce, David</au><au>Clarke, Angus</au><au>Kerr, Michael P.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><ericid>EJ1073012</ericid><atitle>Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome</atitle><jtitle>Journal of autism and developmental disorders</jtitle><stitle>J Autism Dev Disord</stitle><addtitle>J Autism Dev Disord</addtitle><date>2015-09-01</date><risdate>2015</risdate><volume>45</volume><issue>9</issue><spage>2939</spage><epage>2946</epage><pages>2939-2946</pages><issn>0162-3257</issn><eissn>1573-3432</eissn><coden>JADDDQ</coden><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.</abstract><cop>New York</cop><pub>Springer US</pub><pmid>25911307</pmid><doi>10.1007/s10803-015-2457-y</doi><tpages>8</tpages></addata></record> |
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| subjects | Adolescent Adolescents Adult Anxiety Autism Behavior Behavior Problems Behavioral Science and Psychology Care and treatment Child Child and School Psychology Child Welfare Children Children & youth Comparative Analysis Complications and side effects Daughters Demographic aspects Depression (Mood disorder) Depression (Psychology) Developmental disabilities Disability Educational Development Families & family life Female Genetic Disorders Genotype & phenotype Humans Mental Health Mothers Mothers - psychology Mutation Neurosciences Original Paper Parents & parenting Pediatrics Physical Health Predictor Variables Psychological aspects Psychology Public Health Questionnaires Rett syndrome Rett Syndrome - genetics Rett Syndrome - psychology Risk factors Severity (of Disability) Siblings Siblings - psychology Strengths and Difficulties Questionnaire Stress Surveys Well Being |
| title | Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome |
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