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

页码：158 / 167

页数：10

共 44 条

[11] The Mediating Effects of Family Functioning on Psychosocial Outcomes in Healthy Siblings of Children with Sickle Cell Disease [J].