Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role
Transition from pediatric to adult care poses challenges for adolescents with sickle cell disease (SCD). This study explored the transition perspectives of adolescents with SCD, their siblings, and caregivers. Focus groups were conducted with 12 African American families. Adolescents, siblings, and...
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| Veröffentlicht in: | Journal of pediatric nursing 2014-03, Vol.29 (2), p.158-167 |
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| container_end_page | 167 |
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| container_issue | 2 |
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| container_title | Journal of pediatric nursing |
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| creator | Porter, Jerlym S. Graff, J. Carolyn Lopez, Alana D. Hankins, Jane S. |
| description | Transition from pediatric to adult care poses challenges for adolescents with sickle cell disease (SCD). This study explored the transition perspectives of adolescents with SCD, their siblings, and caregivers. Focus groups were conducted with 12 African American families. Adolescents, siblings, and caregivers demonstrated awareness of transition and need for disease management responsibility. Siblings' and caregivers' concerns included adolescent medication adherence. Family concerns included leaving the pediatric environment and adult providers' lack of knowledge. Families recommended more transition preparation opportunities. Family members' perspectives are valuable in informing transition planning. Family-focused interventions designed to prepare and support families during transition are necessary. |
| doi_str_mv | 10.1016/j.pedn.2013.10.002 |
| format | Article |
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Carolyn ; Lopez, Alana D. ; Hankins, Jane S.</creator><creatorcontrib>Porter, Jerlym S. ; Graff, J. Carolyn ; Lopez, Alana D. ; Hankins, Jane S.</creatorcontrib><description>Transition from pediatric to adult care poses challenges for adolescents with sickle cell disease (SCD). This study explored the transition perspectives of adolescents with SCD, their siblings, and caregivers. Focus groups were conducted with 12 African American families. Adolescents, siblings, and caregivers demonstrated awareness of transition and need for disease management responsibility. Siblings' and caregivers' concerns included adolescent medication adherence. Family concerns included leaving the pediatric environment and adult providers' lack of knowledge. Families recommended more transition preparation opportunities. Family members' perspectives are valuable in informing transition planning. Family-focused interventions designed to prepare and support families during transition are necessary.</description><identifier>ISSN: 0882-5963</identifier><identifier>EISSN: 1532-8449</identifier><identifier>DOI: 10.1016/j.pedn.2013.10.002</identifier><identifier>PMID: 24188784</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Adolescent ; Adolescents ; Adult ; Adults ; African Americans ; Anemia, Sickle Cell - nursing ; Anemia, Sickle Cell - therapy ; Caregivers ; Carers ; Child ; Disease management ; Families & family life ; Family Health ; Family perspective ; Female ; Focus Groups ; Humans ; Male ; Middle Aged ; Nursing ; Paediatrics ; Pediatric Nursing ; Pediatrics ; Qualitative methods ; Qualitative research ; Siblings ; Sickle cell anaemia ; Sickle cell disease ; Transition to adult care ; Transition to Adult Care - organization & administration ; Transitions ; Young Adult</subject><ispartof>Journal of pediatric nursing, 2014-03, Vol.29 (2), p.158-167</ispartof><rights>2014 Elsevier Inc.</rights><rights>2014.</rights><rights>Copyright W.B. Saunders Company/JNL Mar/Apr 2014</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c450t-48689ed5a99ba07d3d3b2e073814030d39249c63ce6e021fe19bfa573f01a8e3</citedby><cites>FETCH-LOGICAL-c450t-48689ed5a99ba07d3d3b2e073814030d39249c63ce6e021fe19bfa573f01a8e3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://dx.doi.org/10.1016/j.pedn.2013.10.002$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>314,777,781,3537,27905,27906,30980,30981,45976</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/24188784$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Porter, Jerlym S.</creatorcontrib><creatorcontrib>Graff, J. Carolyn</creatorcontrib><creatorcontrib>Lopez, Alana D.</creatorcontrib><creatorcontrib>Hankins, Jane S.</creatorcontrib><title>Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role</title><title>Journal of pediatric nursing</title><addtitle>J Pediatr Nurs</addtitle><description>Transition from pediatric to adult care poses challenges for adolescents with sickle cell disease (SCD). This study explored the transition perspectives of adolescents with SCD, their siblings, and caregivers. Focus groups were conducted with 12 African American families. Adolescents, siblings, and caregivers demonstrated awareness of transition and need for disease management responsibility. Siblings' and caregivers' concerns included adolescent medication adherence. Family concerns included leaving the pediatric environment and adult providers' lack of knowledge. Families recommended more transition preparation opportunities. Family members' perspectives are valuable in informing transition planning. Family-focused interventions designed to prepare and support families during transition are necessary.</description><subject>Adolescent</subject><subject>Adolescents</subject><subject>Adult</subject><subject>Adults</subject><subject>African Americans</subject><subject>Anemia, Sickle Cell - nursing</subject><subject>Anemia, Sickle Cell - therapy</subject><subject>Caregivers</subject><subject>Carers</subject><subject>Child</subject><subject>Disease management</subject><subject>Families & family life</subject><subject>Family Health</subject><subject>Family perspective</subject><subject>Female</subject><subject>Focus Groups</subject><subject>Humans</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Nursing</subject><subject>Paediatrics</subject><subject>Pediatric Nursing</subject><subject>Pediatrics</subject><subject>Qualitative methods</subject><subject>Qualitative research</subject><subject>Siblings</subject><subject>Sickle cell anaemia</subject><subject>Sickle cell disease</subject><subject>Transition to adult care</subject><subject>Transition to Adult Care - organization & administration</subject><subject>Transitions</subject><subject>Young Adult</subject><issn>0882-5963</issn><issn>1532-8449</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNqNkU1v1DAQhi0EokvpH-CALHHpJdvxRxIbcakWFipVAtG9W157Irwk8WInlfrvcbSFAwfU00ijZ17NzEPIGwZrBqy5OqyP6Mc1ByZKYw3An5EVqwWvlJT6OVmBUryqdSPOyKucDwCM1a1-Sc64ZEq1Sq6I2SU75jCFONJtigP9hj7YKQVHp0iv_dxPdGMT0jDSu-B-9kg32Pf0Y8hoM74vfMpHdFO4x0xLyPQD6dYOoX-g32OPr8mLzvYZLx7rOdltP-02X6rbr59vNte3lZM1TJVUjdLoa6v13kLrhRd7jtAKxSQI8EJzqV0jHDYInHXI9L6zdSs6YFahOCeXp9hjir9mzJMZQnZlUTtinLNhNQfBW6bVE1AmJS-va56AAhe84WpJffcPeohzGsvJCyV5W0OzUPxEuRRzTtiZYwqDTQ-GgVmcmoNZnJrF6dIrTsvQ28foeT-g_zvyR2IBPpwALA--D5hMdgFHV0ymYsb4GP6X_xslrq9j</recordid><startdate>201403</startdate><enddate>201403</enddate><creator>Porter, Jerlym S.</creator><creator>Graff, J. Carolyn</creator><creator>Lopez, Alana D.</creator><creator>Hankins, Jane S.</creator><general>Elsevier Inc</general><general>W.B. Saunders Company/JNL</general><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>7QJ</scope><scope>ASE</scope><scope>FPQ</scope><scope>K6X</scope><scope>NAPCQ</scope><scope>7X8</scope></search><sort><creationdate>201403</creationdate><title>Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role</title><author>Porter, Jerlym S. ; Graff, J. Carolyn ; Lopez, Alana D. ; Hankins, Jane S.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c450t-48689ed5a99ba07d3d3b2e073814030d39249c63ce6e021fe19bfa573f01a8e3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><topic>Adolescent</topic><topic>Adolescents</topic><topic>Adult</topic><topic>Adults</topic><topic>African Americans</topic><topic>Anemia, Sickle Cell - nursing</topic><topic>Anemia, Sickle Cell - therapy</topic><topic>Caregivers</topic><topic>Carers</topic><topic>Child</topic><topic>Disease management</topic><topic>Families & family life</topic><topic>Family Health</topic><topic>Family perspective</topic><topic>Female</topic><topic>Focus Groups</topic><topic>Humans</topic><topic>Male</topic><topic>Middle Aged</topic><topic>Nursing</topic><topic>Paediatrics</topic><topic>Pediatric Nursing</topic><topic>Pediatrics</topic><topic>Qualitative methods</topic><topic>Qualitative research</topic><topic>Siblings</topic><topic>Sickle cell anaemia</topic><topic>Sickle cell disease</topic><topic>Transition to adult care</topic><topic>Transition to Adult Care - organization & administration</topic><topic>Transitions</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Porter, Jerlym S.</creatorcontrib><creatorcontrib>Graff, J. 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| fulltext | fulltext |
| identifier | ISSN: 0882-5963 |
| ispartof | Journal of pediatric nursing, 2014-03, Vol.29 (2), p.158-167 |
| issn | 0882-5963 1532-8449 |
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| source | MEDLINE; Elsevier ScienceDirect Journals; Applied Social Sciences Index & Abstracts (ASSIA) |
| subjects | Adolescent Adolescents Adult Adults African Americans Anemia, Sickle Cell - nursing Anemia, Sickle Cell - therapy Caregivers Carers Child Disease management Families & family life Family Health Family perspective Female Focus Groups Humans Male Middle Aged Nursing Paediatrics Pediatric Nursing Pediatrics Qualitative methods Qualitative research Siblings Sickle cell anaemia Sickle cell disease Transition to adult care Transition to Adult Care - organization & administration Transitions Young Adult |
| title | Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role |
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