Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role

被引:30
作者
Porter, Jerlym S. [1 ]
Graff, J. Carolyn [2 ]
Lopez, Alana D. [1 ]
Hankins, Jane S. [1 ]
机构
[1] St Jude Childrens Res Hosp, Memphis, TN 38105 USA
[2] Univ Tennessee, Ctr Hlth Sci, Memphis, TN 38163 USA
来源
JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES | 2014年 / 29卷 / 02期
关键词
Sickle cell disease; Transition to adult care; Qualitative methods; Family perspective; YOUNG-ADULTS; ADOLESCENTS; CHILDREN; EXPERIENCES; SIBLINGS; PARENTS;
D O I
10.1016/j.pedn.2013.10.002
中图分类号
R47 [护理学];
学科分类号
1011 ;
摘要
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. (C) 2014 Elsevier Inc. All rights reserved.
引用
收藏
页码:158 / 167
页数:10
相关论文
共 44 条
[1]   Clinical Report-Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home [J].
Cooley W.C. ;
Sagerman P.J. ;
Barr M.S. ;
Ciccarelli M. ;
Hergenroeder A.C. ;
Klitzner T.S. ;
Mann M. ;
Pickler L. ;
Strickland B. ;
Thompson B. ;
Weinberg S.T. ;
White P.H. ;
Wilkie N.C. ;
Skipper S.M. ;
Brin A. ;
Flinn S.K. .
PEDIATRICS, 2011, 128 (01) :182-+
[2]  
[Anonymous], 2012, QUAL INQ
[3]   Outcome of transitioning pediatric patients with sickle cell disease to adult programs. [J].
Ballas, SK ;
Dampier, C .
BLOOD, 2004, 104 (11) :22B-22B
[4]   Voices not heard: A systematic review of adolescents' and emerging adults' perspectives of health care transition [J].
Betz, Cecily L. ;
Lobo, Marie L. ;
Nehring, Wendy M. ;
Bui, Kim .
NURSING OUTLOOK, 2013, 61 (05) :311-336
[5]   Health care transition for adolescents with special healthcare needs: Where is nursing? [J].
Betz, Cecily L. .
NURSING OUTLOOK, 2013, 61 (05) :258-265
[6]   Age-related treatment patterns in sickle cell disease patients and the associated sickle cell complications and healthcare costs [J].
Blinder, Morey A. ;
Vekeman, Francis ;
Sasane, Medha ;
Trahey, Alex ;
Paley, Carole ;
Duh, Mei Sheng .
PEDIATRIC BLOOD & CANCER, 2013, 60 (05) :828-835
[7]  
Bronfenbrenner U., 1979, The ecology of human development: Experiments by nature and design
[8]  
Bronfenbrenner U., 2005, Making human beings human, bioecological perspectives on human development
[9]   Acute Care Utilization and Rehospitalizations for Sickle Cell Disease [J].
Brousseau, David C. ;
Owens, Pamela L. ;
Mosso, Andrew L. ;
Panepinto, Julie A. ;
Steiner, Claudia A. .
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2010, 303 (13) :1288-1294
[10]   Integrating Interactive Web-Based Technology to Assess Adherence and Clinical Outcomes in Pediatric Sickle Cell Disease [J].
Crosby, Lori E. ;
Barach, Ilana ;
McGrady, Meghan E. ;
Kalinyak, Karen A. ;
Eastin, Adryan R. ;
Mitchell, Monica J. .
ANEMIA, 2012, 2012