Purpose: Youth and young adults (YYA) with chronic illness and/or disability (CID) face numerous challenges in transition from pediatric to adult health care. Established evidence supports interdisciplinary team approaches to preparing youth and families for transition and transfer. The purpose of this national survey was to address a gap in current knowledge specific to pediatric nursing professionals' roles and responsibilities in health care transition planning (HCTP).
Methodology: A quantitative descriptive study using a survey questionnaire validated by experts in the field investigated respondents' role in HCTP, inclusion of HCTP in job description, levels of HCTP knowledge, and ratings of importance of HCTP elements. A volunteer sample of 1814 respondents was drawn from two professional organizations.
Results: Over 64% of respondents performed HCTP activities related to complex chronic illness management. Only 18% reported specialized training in HCTP. The highest-ranking items in regard to perceived importance were educating and supporting disease self-management and speaking with families about complex needs. Predictors of perceived importance were role, inclusion of transition planning in a job description, percentage of time in direct care, caring for those aged 14 years and older, and level of knowledge about HCTP.
Conclusions: The findings highlight key aspects of the pediatric nurse role in HCTP and identify specific elements that can be addressed to support future HCTP role development.
Practice implications: Pediatric nurses perform a vital role in HCTP for YYA with CID that may be enhanced with the inclusion of HCTP activities in job descriptions and specialized interdisciplinary HCTP training related to this emerging and growing population.
Keywords: Adolescent; Chronic illness and disability; Pediatric nursing; Transition to adult care; Young adult.
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