The dilemmas of parents of adolescents and young adults with congenital heart disease
OBJECTIVE: To provide a better understanding of parents' experiences as their children with congenital heart disease mature through adolescence and young adulthood. DESIGN: A qualitative pilot study. SETTING: The physician practices of the pediatric cardiology service of a large university medi...
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| Veröffentlicht in: | Heart & lung 1997-05, Vol.26 (3), p.187-195 |
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| container_title | Heart & lung |
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| creator | Sparacino, Patricia S.A. Tong, Elizabeth M. Messias, DeAnne K.H. Foote, Dru Chesla, Catherine A. Gilliss, Catherine L. |
| description | OBJECTIVE: To provide a better understanding of parents' experiences as their children with congenital heart disease mature through adolescence and young adulthood.
DESIGN: A qualitative pilot study.
SETTING: The physician practices of the pediatric cardiology service of a large university medical center.
SUBJECTS: Eight parents of adolescents and young adults with congenital heart disease.
INTERVENTION: Each parent was separately interviewed with use of a semistructured interview guide.
RESULTS: Our study has identified seven themes—the dilemmas of normality, disclosure dilemmas, the challenge of uncertainty, illness management dilemmas and strategies, social integration versus social isolation, the impact of illness on the family, and coping—with which parents have struggled throughout their adolescent's and young adult's life. It was not possible to determine whether the experiences described by these parents are unique.
CONCLUSIONS: Parents experience distress, as outlined in the seven themes. They need assistance to determine what is “normal” for their child and how to monitor their child's health and safety. Further research is needed to develop specific interventions. |
| doi_str_mv | 10.1016/S0147-9563(97)90055-8 |
| format | Article |
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DESIGN: A qualitative pilot study.
SETTING: The physician practices of the pediatric cardiology service of a large university medical center.
SUBJECTS: Eight parents of adolescents and young adults with congenital heart disease.
INTERVENTION: Each parent was separately interviewed with use of a semistructured interview guide.
RESULTS: Our study has identified seven themes—the dilemmas of normality, disclosure dilemmas, the challenge of uncertainty, illness management dilemmas and strategies, social integration versus social isolation, the impact of illness on the family, and coping—with which parents have struggled throughout their adolescent's and young adult's life. It was not possible to determine whether the experiences described by these parents are unique.
CONCLUSIONS: Parents experience distress, as outlined in the seven themes. They need assistance to determine what is “normal” for their child and how to monitor their child's health and safety. Further research is needed to develop specific interventions.</description><identifier>ISSN: 0147-9563</identifier><identifier>EISSN: 1527-3288</identifier><identifier>DOI: 10.1016/S0147-9563(97)90055-8</identifier><identifier>PMID: 9176686</identifier><identifier>CODEN: HELUAI</identifier><language>eng</language><publisher>St. Louis, MO: Mosby, Inc</publisher><subject>Adaptation, Psychological ; Adolescent ; Adult ; Biological and medical sciences ; Cardiology. Vascular system ; Congenital heart diseases. Malformations of the aorta, pulmonary vessels and vena cava ; Heart ; Heart Defects, Congenital - psychology ; Heart Defects, Congenital - rehabilitation ; Humans ; Marriage - psychology ; Medical sciences ; Parenting - psychology ; Parents - psychology ; Personality Assessment ; Pilot Projects ; Postoperative Complications - psychology ; Postoperative Complications - rehabilitation ; Sick Role ; Social Isolation ; Truth Disclosure</subject><ispartof>Heart & lung, 1997-05, Vol.26 (3), p.187-195</ispartof><rights>1997</rights><rights>1997 INIST-CNRS</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c389t-1ab4575c4337905fe80d34c6588bcda28b3a8496888addd8b0cd1490bdc2b2c33</citedby><cites>FETCH-LOGICAL-c389t-1ab4575c4337905fe80d34c6588bcda28b3a8496888addd8b0cd1490bdc2b2c33</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://dx.doi.org/10.1016/S0147-9563(97)90055-8$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>314,778,782,3539,27907,27908,45978</link.rule.ids><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=2686951$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/9176686$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Sparacino, Patricia S.A.</creatorcontrib><creatorcontrib>Tong, Elizabeth M.</creatorcontrib><creatorcontrib>Messias, DeAnne K.H.</creatorcontrib><creatorcontrib>Foote, Dru</creatorcontrib><creatorcontrib>Chesla, Catherine A.</creatorcontrib><creatorcontrib>Gilliss, Catherine L.</creatorcontrib><title>The dilemmas of parents of adolescents and young adults with congenital heart disease</title><title>Heart & lung</title><addtitle>Heart Lung</addtitle><description>OBJECTIVE: To provide a better understanding of parents' experiences as their children with congenital heart disease mature through adolescence and young adulthood.
DESIGN: A qualitative pilot study.
SETTING: The physician practices of the pediatric cardiology service of a large university medical center.
SUBJECTS: Eight parents of adolescents and young adults with congenital heart disease.
INTERVENTION: Each parent was separately interviewed with use of a semistructured interview guide.
RESULTS: Our study has identified seven themes—the dilemmas of normality, disclosure dilemmas, the challenge of uncertainty, illness management dilemmas and strategies, social integration versus social isolation, the impact of illness on the family, and coping—with which parents have struggled throughout their adolescent's and young adult's life. It was not possible to determine whether the experiences described by these parents are unique.
CONCLUSIONS: Parents experience distress, as outlined in the seven themes. They need assistance to determine what is “normal” for their child and how to monitor their child's health and safety. Further research is needed to develop specific interventions.</description><subject>Adaptation, Psychological</subject><subject>Adolescent</subject><subject>Adult</subject><subject>Biological and medical sciences</subject><subject>Cardiology. Vascular system</subject><subject>Congenital heart diseases. Malformations of the aorta, pulmonary vessels and vena cava</subject><subject>Heart</subject><subject>Heart Defects, Congenital - psychology</subject><subject>Heart Defects, Congenital - rehabilitation</subject><subject>Humans</subject><subject>Marriage - psychology</subject><subject>Medical sciences</subject><subject>Parenting - psychology</subject><subject>Parents - psychology</subject><subject>Personality Assessment</subject><subject>Pilot Projects</subject><subject>Postoperative Complications - psychology</subject><subject>Postoperative Complications - rehabilitation</subject><subject>Sick Role</subject><subject>Social Isolation</subject><subject>Truth Disclosure</subject><issn>0147-9563</issn><issn>1527-3288</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>1997</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNqFkE1v2zAMQIWhQ5d2-wkBfBiK9eBNsixZOhVFsHYDCuyw9CzQEp1o8Ecq2S3y76ckRq7VhRL5SBGPkCWj3xll8sdfysoq10Lyb7q61ZQKkasPZMFEUeW8UOqCLM7IJ3IV4z-aDpfVJbnUrJJSyQV5Xm8xc77FroOYDU22g4D9eLyCG1qM9viE3mX7Yeo3KTu1KfHmx21mh36DvR-hzbYIYUyTIkLEz-RjA23EL3O8Js8PP9erX_nTn8ffq_un3HKlx5xBXYpK2JLzSlPRoKKOl1YKpWrroFA1B1VqqZQC55yqqXWs1LR2tqgLy_k1uTnN3YXhZcI4ms6nhdsWehymaNJULkopEyhOoA1DjAEbswu-g7A3jJqDTnPUaQ6ujE7xoNOo1LecP5jqDt25a_aX6l_nOkQLbROgtz6esSIxWrCE3Z0wTDJePQYTrcfeovMB7Wjc4N9Z5D_HLJIR</recordid><startdate>19970501</startdate><enddate>19970501</enddate><creator>Sparacino, Patricia S.A.</creator><creator>Tong, Elizabeth M.</creator><creator>Messias, DeAnne K.H.</creator><creator>Foote, Dru</creator><creator>Chesla, Catherine A.</creator><creator>Gilliss, Catherine L.</creator><general>Mosby, Inc</general><general>Mosby</general><scope>IQODW</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>7X8</scope></search><sort><creationdate>19970501</creationdate><title>The dilemmas of parents of adolescents and young adults with congenital heart disease</title><author>Sparacino, Patricia S.A. ; Tong, Elizabeth M. ; Messias, DeAnne K.H. ; Foote, Dru ; Chesla, Catherine A. ; Gilliss, Catherine L.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c389t-1ab4575c4337905fe80d34c6588bcda28b3a8496888addd8b0cd1490bdc2b2c33</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>1997</creationdate><topic>Adaptation, Psychological</topic><topic>Adolescent</topic><topic>Adult</topic><topic>Biological and medical sciences</topic><topic>Cardiology. Vascular system</topic><topic>Congenital heart diseases. Malformations of the aorta, pulmonary vessels and vena cava</topic><topic>Heart</topic><topic>Heart Defects, Congenital - psychology</topic><topic>Heart Defects, Congenital - rehabilitation</topic><topic>Humans</topic><topic>Marriage - psychology</topic><topic>Medical sciences</topic><topic>Parenting - psychology</topic><topic>Parents - psychology</topic><topic>Personality Assessment</topic><topic>Pilot Projects</topic><topic>Postoperative Complications - psychology</topic><topic>Postoperative Complications - rehabilitation</topic><topic>Sick Role</topic><topic>Social Isolation</topic><topic>Truth Disclosure</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Sparacino, Patricia S.A.</creatorcontrib><creatorcontrib>Tong, Elizabeth M.</creatorcontrib><creatorcontrib>Messias, DeAnne K.H.</creatorcontrib><creatorcontrib>Foote, Dru</creatorcontrib><creatorcontrib>Chesla, Catherine A.</creatorcontrib><creatorcontrib>Gilliss, Catherine L.</creatorcontrib><collection>Pascal-Francis</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>Heart & lung</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Sparacino, Patricia S.A.</au><au>Tong, Elizabeth M.</au><au>Messias, DeAnne K.H.</au><au>Foote, Dru</au><au>Chesla, Catherine A.</au><au>Gilliss, Catherine L.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The dilemmas of parents of adolescents and young adults with congenital heart disease</atitle><jtitle>Heart & lung</jtitle><addtitle>Heart Lung</addtitle><date>1997-05-01</date><risdate>1997</risdate><volume>26</volume><issue>3</issue><spage>187</spage><epage>195</epage><pages>187-195</pages><issn>0147-9563</issn><eissn>1527-3288</eissn><coden>HELUAI</coden><abstract>OBJECTIVE: To provide a better understanding of parents' experiences as their children with congenital heart disease mature through adolescence and young adulthood.
DESIGN: A qualitative pilot study.
SETTING: The physician practices of the pediatric cardiology service of a large university medical center.
SUBJECTS: Eight parents of adolescents and young adults with congenital heart disease.
INTERVENTION: Each parent was separately interviewed with use of a semistructured interview guide.
RESULTS: Our study has identified seven themes—the dilemmas of normality, disclosure dilemmas, the challenge of uncertainty, illness management dilemmas and strategies, social integration versus social isolation, the impact of illness on the family, and coping—with which parents have struggled throughout their adolescent's and young adult's life. It was not possible to determine whether the experiences described by these parents are unique.
CONCLUSIONS: Parents experience distress, as outlined in the seven themes. They need assistance to determine what is “normal” for their child and how to monitor their child's health and safety. Further research is needed to develop specific interventions.</abstract><cop>St. Louis, MO</cop><pub>Mosby, Inc</pub><pmid>9176686</pmid><doi>10.1016/S0147-9563(97)90055-8</doi><tpages>9</tpages></addata></record> |
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| source | Elsevier ScienceDirect Journals Complete - AutoHoldings; MEDLINE |
| subjects | Adaptation, Psychological Adolescent Adult Biological and medical sciences Cardiology. Vascular system Congenital heart diseases. Malformations of the aorta, pulmonary vessels and vena cava Heart Heart Defects, Congenital - psychology Heart Defects, Congenital - rehabilitation Humans Marriage - psychology Medical sciences Parenting - psychology Parents - psychology Personality Assessment Pilot Projects Postoperative Complications - psychology Postoperative Complications - rehabilitation Sick Role Social Isolation Truth Disclosure |
| title | The dilemmas of parents of adolescents and young adults with congenital heart disease |
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