Porter Jerlym S, Graff J Carolyn, Lopez Alana D, Hankins Jane S
St. Jude Children's Research Hospital, Memphis, TN.
University of Tennessee Health Science Center, Memphis, TN.
J Pediatr Nurs. 2014 Mar-Apr;29(2):158-67. doi: 10.1016/j.pedn.2013.10.002. Epub 2013 Oct 16.
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.
从儿科护理过渡到成人护理给患有镰状细胞病（SCD）的青少年带来了挑战。本研究探讨了患有SCD的青少年、他们的兄弟姐妹和照顾者对过渡的看法。对12个非裔美国家庭进行了焦点小组访谈。青少年、兄弟姐妹和照顾者表现出对过渡的认识以及对疾病管理责任的需求。兄弟姐妹和照顾者的担忧包括青少年的药物依从性。家庭的担忧包括离开儿科环境以及成人医疗服务提供者缺乏相关知识。家庭建议提供更多的过渡准备机会。家庭成员的观点对于为过渡计划提供信息很有价值。有必要开展以家庭为重点的干预措施，以便在过渡期间为家庭做好准备并提供支持。
