Understanding the Systems, Contexts, Behaviors, and Strategies of Parents Advocating for Their Children with Down Syndrome
In the current qualitative research study, we focused on understanding the ecological systems, contexts, behaviors, and strategies of parents (N = 435) advocating for their children with an intellectual and developmental disability diagnosis, specifically Down syndrome (DS). Based on the data analys...
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| Veröffentlicht in: | Intellectual and developmental disabilities 2019-04, Vol.57 (2), p.146-157 |
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| creator | Krueger, Kristen Cless, Jessica D Dyster, Meghan Steele, Robert Nelson Goff, Briana S |
| description | In the current qualitative research study, we focused on understanding the ecological systems, contexts, behaviors, and strategies of parents (N = 435) advocating for their children with an intellectual and developmental disability diagnosis, specifically Down syndrome (DS). Based on the data analysis, parents of children with DS advocate for their children frequently, in a variety of settings, with different actions, attitudes, motivations, and outcomes. The most common settings where advocacy occurred were primarily school and healthcare systems. The goals of parents often included inclusiveness, equality, and acceptance, whereas a few parents reported advocating due to discrimination and judgment. Implications for further research and professional practice also are described. |
| doi_str_mv | 10.1352/1934-9556-57.2.146 |
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Based on the data analysis, parents of children with DS advocate for their children frequently, in a variety of settings, with different actions, attitudes, motivations, and outcomes. The most common settings where advocacy occurred were primarily school and healthcare systems. The goals of parents often included inclusiveness, equality, and acceptance, whereas a few parents reported advocating due to discrimination and judgment. Implications for further research and professional practice also are described.</description><identifier>ISSN: 1934-9491</identifier><identifier>EISSN: 1934-9556</identifier><identifier>DOI: 10.1352/1934-9556-57.2.146</identifier><identifier>PMID: 30920907</identifier><language>eng</language><publisher>United States: American Association on Intellectual and Developmental Disabilities</publisher><subject>Adaptation, Psychological ; Administrator Surveys ; Adolescent ; Adult ; Advocacy ; Attitude to Health ; Autism ; Child ; Child Advocacy ; Child, Preschool ; Children & youth ; Coping ; Data Analysis ; Developmental disabilities ; Developmental Disabilities - psychology ; Developmental Disabilities - rehabilitation ; Disability ; Down Syndrome ; Down Syndrome - psychology ; Down Syndrome - rehabilitation ; Ecosystems ; Electronic Mail ; Families & family life ; Family Income ; Female ; Gender Differences ; Health Services ; Humans ; Individual Differences ; Infant ; Intellectual Disability - psychology ; Intellectual Disability - rehabilitation ; Lobbying ; Male ; Medical research ; Middle Aged ; Objectives ; Parent Child Relationship ; Parents ; Parents & parenting ; Parents - psychology ; Pediatrics ; Professionals ; Public Opinion ; Qualitative research ; Quality of life ; Researchers ; Schools ; Social Environment ; Social Support ; Special education ; Stress ; System theory ; Systems Approach ; Young Adult</subject><ispartof>Intellectual and developmental disabilities, 2019-04, Vol.57 (2), p.146-157</ispartof><rights>Copyright American Association of Intellectual & Developmental Disabilities Apr 2019</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c353t-3a653d0217be6eae6fc834e6632141320eaa941187dbe5dec66a8c206bde95143</citedby><cites>FETCH-LOGICAL-c353t-3a653d0217be6eae6fc834e6632141320eaa941187dbe5dec66a8c206bde95143</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,777,781,27905,27906</link.rule.ids><backlink>$$Uhttp://eric.ed.gov/ERICWebPortal/detail?accno=EJ1212065$$DView record in ERIC$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/30920907$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Krueger, Kristen</creatorcontrib><creatorcontrib>Cless, Jessica D</creatorcontrib><creatorcontrib>Dyster, Meghan</creatorcontrib><creatorcontrib>Steele, Robert</creatorcontrib><creatorcontrib>Nelson Goff, Briana S</creatorcontrib><title>Understanding the Systems, Contexts, Behaviors, and Strategies of Parents Advocating for Their Children with Down Syndrome</title><title>Intellectual and developmental disabilities</title><addtitle>Intellect Dev Disabil</addtitle><description>In the current qualitative research study, we focused on understanding the ecological systems, contexts, behaviors, and strategies of parents (N = 435) advocating for their children with an intellectual and developmental disability diagnosis, specifically Down syndrome (DS). Based on the data analysis, parents of children with DS advocate for their children frequently, in a variety of settings, with different actions, attitudes, motivations, and outcomes. The most common settings where advocacy occurred were primarily school and healthcare systems. The goals of parents often included inclusiveness, equality, and acceptance, whereas a few parents reported advocating due to discrimination and judgment. Implications for further research and professional practice also are described.</description><subject>Adaptation, Psychological</subject><subject>Administrator Surveys</subject><subject>Adolescent</subject><subject>Adult</subject><subject>Advocacy</subject><subject>Attitude to Health</subject><subject>Autism</subject><subject>Child</subject><subject>Child Advocacy</subject><subject>Child, Preschool</subject><subject>Children & youth</subject><subject>Coping</subject><subject>Data Analysis</subject><subject>Developmental disabilities</subject><subject>Developmental Disabilities - psychology</subject><subject>Developmental Disabilities - rehabilitation</subject><subject>Disability</subject><subject>Down Syndrome</subject><subject>Down Syndrome - psychology</subject><subject>Down Syndrome - rehabilitation</subject><subject>Ecosystems</subject><subject>Electronic Mail</subject><subject>Families & family life</subject><subject>Family Income</subject><subject>Female</subject><subject>Gender Differences</subject><subject>Health Services</subject><subject>Humans</subject><subject>Individual Differences</subject><subject>Infant</subject><subject>Intellectual Disability - 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psychology</topic><topic>Developmental Disabilities - rehabilitation</topic><topic>Disability</topic><topic>Down Syndrome</topic><topic>Down Syndrome - psychology</topic><topic>Down Syndrome - rehabilitation</topic><topic>Ecosystems</topic><topic>Electronic Mail</topic><topic>Families & family life</topic><topic>Family Income</topic><topic>Female</topic><topic>Gender Differences</topic><topic>Health Services</topic><topic>Humans</topic><topic>Individual Differences</topic><topic>Infant</topic><topic>Intellectual Disability - psychology</topic><topic>Intellectual Disability - rehabilitation</topic><topic>Lobbying</topic><topic>Male</topic><topic>Medical research</topic><topic>Middle Aged</topic><topic>Objectives</topic><topic>Parent Child Relationship</topic><topic>Parents</topic><topic>Parents & parenting</topic><topic>Parents - psychology</topic><topic>Pediatrics</topic><topic>Professionals</topic><topic>Public Opinion</topic><topic>Qualitative research</topic><topic>Quality of life</topic><topic>Researchers</topic><topic>Schools</topic><topic>Social Environment</topic><topic>Social Support</topic><topic>Special education</topic><topic>Stress</topic><topic>System theory</topic><topic>Systems Approach</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Krueger, Kristen</creatorcontrib><creatorcontrib>Cless, Jessica D</creatorcontrib><creatorcontrib>Dyster, Meghan</creatorcontrib><creatorcontrib>Steele, Robert</creatorcontrib><creatorcontrib>Nelson Goff, Briana S</creatorcontrib><collection>ERIC</collection><collection>ERIC (Ovid)</collection><collection>ERIC</collection><collection>ERIC</collection><collection>ERIC (Legacy Platform)</collection><collection>ERIC( SilverPlatter )</collection><collection>ERIC</collection><collection>ERIC PlusText (Legacy Platform)</collection><collection>Education Resources Information Center (ERIC)</collection><collection>ERIC</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Social Sciences Premium Collection</collection><collection>ProQuest Central (Corporate)</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Education Database (Alumni Edition)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>Research Library (Alumni Edition)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest One Sustainability</collection><collection>ProQuest Central UK/Ireland</collection><collection>Social Science Premium Collection</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>Education Collection</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>Research Library Prep</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Education Database</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest Psychology</collection><collection>Research Library</collection><collection>Research Library (Corporate)</collection><collection>ProQuest One Education</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>MEDLINE - Academic</collection><jtitle>Intellectual and developmental disabilities</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Krueger, Kristen</au><au>Cless, Jessica D</au><au>Dyster, Meghan</au><au>Steele, Robert</au><au>Nelson Goff, Briana S</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><ericid>EJ1212065</ericid><atitle>Understanding the Systems, Contexts, Behaviors, and Strategies of Parents Advocating for Their Children with Down Syndrome</atitle><jtitle>Intellectual and developmental disabilities</jtitle><addtitle>Intellect Dev Disabil</addtitle><date>2019-04</date><risdate>2019</risdate><volume>57</volume><issue>2</issue><spage>146</spage><epage>157</epage><pages>146-157</pages><issn>1934-9491</issn><eissn>1934-9556</eissn><abstract>In the current qualitative research study, we focused on understanding the ecological systems, contexts, behaviors, and strategies of parents (N = 435) advocating for their children with an intellectual and developmental disability diagnosis, specifically Down syndrome (DS). Based on the data analysis, parents of children with DS advocate for their children frequently, in a variety of settings, with different actions, attitudes, motivations, and outcomes. The most common settings where advocacy occurred were primarily school and healthcare systems. The goals of parents often included inclusiveness, equality, and acceptance, whereas a few parents reported advocating due to discrimination and judgment. Implications for further research and professional practice also are described.</abstract><cop>United States</cop><pub>American Association on Intellectual and Developmental Disabilities</pub><pmid>30920907</pmid><doi>10.1352/1934-9556-57.2.146</doi><tpages>12</tpages></addata></record> |
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| subjects | Adaptation, Psychological Administrator Surveys Adolescent Adult Advocacy Attitude to Health Autism Child Child Advocacy Child, Preschool Children & youth Coping Data Analysis Developmental disabilities Developmental Disabilities - psychology Developmental Disabilities - rehabilitation Disability Down Syndrome Down Syndrome - psychology Down Syndrome - rehabilitation Ecosystems Electronic Mail Families & family life Family Income Female Gender Differences Health Services Humans Individual Differences Infant Intellectual Disability - psychology Intellectual Disability - rehabilitation Lobbying Male Medical research Middle Aged Objectives Parent Child Relationship Parents Parents & parenting Parents - psychology Pediatrics Professionals Public Opinion Qualitative research Quality of life Researchers Schools Social Environment Social Support Special education Stress System theory Systems Approach Young Adult |
| title | Understanding the Systems, Contexts, Behaviors, and Strategies of Parents Advocating for Their Children with Down Syndrome |
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