Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease

被引：28

作者：

Porter, Jerlym S. ^{[1
]}

Wesley, Kimberly M. ^{[1
,2
]}

Zhao, Mimi S. ^{[1
]}

Rupff, Rebecca J. ^{[1
]}

Hankins, Jane S. ^{[1
]}

机构：

[1] St Jude Childrens Res Hosp, Dept Psychol, Memphis, TN 38105 USA

[2] Childrens Hosp Philadelphia, Dept Child & Adolescent Psychiat & Behav Sci, Philadelphia, PA USA

来源：

JOURNAL OF PEDIATRIC PSYCHOLOGY | 2017年 / 42卷 / 09期

关键词：

developmental perspectives; qualitative methods; sickle cell disease; RANDOMIZED CONTROLLED-TRIAL; HEALTH-CARE; ADOLESCENTS; READINESS; MODEL; RECOMMENDATIONS; EXPERIENCES; TECHNOLOGY; ADHERENCE; SYMPTOMS;

D O I：

10.1093/jpepsy/jsx088

中图分类号：

B844 [发展心理学（人类心理学）];

学科分类号：

040202 ;

摘要：

Objectives The aim of this study was to explore perspectives of transition and transition readiness of young adult patients (YAs) with sickle cell disease (SCD) who have transitioned to adult health care. Methods In all, 19 YAs with SCD (ages 18-30 years) participated in one of three focus groups and completed a brief questionnaire about transition topics. Transcripts were coded and emergent themes were examined using the social-ecological model of adolescent and young adult readiness for transition (SMART). Results Themes were consistent with most SMART components. Adult provider relationships and negative medical experiences emerged as salient factors. YAs ranked choosing an adult provider, seeking emergency care, understanding medications/medication adherence, knowing SCD complications, and being aware of the impact of health behaviors as the most important topics to include in transition programming. Conclusions The unique perspectives of YAs can inform the development and evaluation of SCD transition programming by incorporating the identified themes.

引用

页码：1016 / 1027

页数：12

共 42 条

[1] Transition Needs of Adolescents With Sickle Cell Disease [J].

Abel, Regina A. ;

Cho, Esther ;

Chadwick-Mansker, Kelley R. ;

D'Souza, Natalia ;

Housten, Ashley J. ;

King, Allison A. .

AMERICAN JOURNAL OF OCCUPATIONAL THERAPY, 2015, 69 (02) :p1-p5

[2] Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services [J].

Annunziato, Rachel A. ;

Emre, Sukru ;

Shneider, Min ;

Barton, Codette ;

Dugan, Christina A. ;

Shemesh, Eyal .

PEDIATRIC TRANSPLANTATION, 2007, 11 (06) :608-614

[3]

[Anonymous], 2013, Statewide Agric Land Use Baseline, DOI DOI 10.1007/S13398-014-0173-7.2

[4]

Betz Cecily L, 2004, Issues Compr Pediatr Nurs, V27, P179, DOI 10.1080/01460860490497903

[5] 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

[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] Health Care Transition for Youth With Special Health Care Needs [J].

Bloom, Sheila R. ;

Kuhlthau, Karen ;

Van Cleave, Jeanne ;

Knapp, Alixandra A. ;

Newacheck, Paul ;

Perrin, James M. .

JOURNAL OF ADOLESCENT HEALTH, 2012, 51 (03) :213-219

[8] 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

[9] Transition and Sickle Cell Disease [J].

DeBaun, Michael R. ;

Telfair, Joseph .

PEDIATRICS, 2012, 130 (05) :926-935

[10] Silent cerebral infarcts: a review on a prevalent and progressive cause of neurologic injury in sickle cell anemia [J].

DeBaun, Michael R. ;

Armstrong, F. Daniel ;

McKinstry, Robert C. ;

Ware, Russell E. ;

Vichinsky, Elliot ;

Kirkham, Fenella J. .

BLOOD, 2012, 119 (20) :4587-4596

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