Literature DB >> 19306789

Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program.

Philip Moons1, Sara Pinxten, Davy Dedroog, Kristien Van Deyk, Marc Gewillig, Deborah Hilderson, Werner Budts.   

Abstract

PURPOSE: To investigate the expectations and experiences of adolescents on transferring from a pediatric cardiology program to an adult congenital heart disease program.
METHODS: A qualitative, phenomenologic study was conducted, in which semi-structured, in-depth interviews were performed with 14 adolescents (aged 15-17 years) with congenital heart disease. Interviews were tape-recorded and transcribed verbatim. Data were analyzed using procedures described by Colaizzi.
RESULTS: The study identified six themes that characterized adolescents' views of the transfer process: leaving pediatric cardiology was viewed as normal; leaving behind familiar surroundings; a positive wait-and-see attitude toward the adult congenital heart disease program; adjusting to a new environment; a need for better information; and a shift in roles between the adolescent and his parents.
CONCLUSION: Although adolescents with congenital heart disease have a positive attitude toward transferring to an adult congenital heart disease program, they identified aspects of the transfer that healthcare professionals need to address. Patients and their families should be prepared for the transfer by informing them about the adult program and its healthcare providers. A formal transition program can play a role in this respect.

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Year:  2009        PMID: 19306789     DOI: 10.1016/j.jadohealth.2008.11.007

Source DB:  PubMed          Journal:  J Adolesc Health        ISSN: 1054-139X            Impact factor:   5.012


  20 in total

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Authors:  Elizabeth O Buschur; Bethany Glick; Manmohan K Kamboj
Journal:  Transl Pediatr       Date:  2017-10

2.  Self-Reported Health Experiences of Children Living with Congenital Heart Defects: Including Patient-Reported Outcomes in a National Cohort Study.

Authors:  Rachel Louise Knowles; Valerija Tadic; Ailbhe Hogan; Catherine Bull; Jugnoo Sangeeta Rahi; Carol Dezateux
Journal:  PLoS One       Date:  2016-08-03       Impact factor: 3.240

3.  Transition of young people with chronic conditions: a cross-sectional study of patient perceptions before and after transfer from pediatric to adult health care.

Authors:  Christoph Rutishauser; Susan M Sawyer; Anne-Emmanuelle Ambresin
Journal:  Eur J Pediatr       Date:  2014-03-09       Impact factor: 3.183

4.  Transfer from paediatric rheumatology to the adult rheumatology setting: experiences and expectations of young adults with juvenile idiopathic arthritis.

Authors:  Deborah Hilderson; Leen Eyckmans; Kristien Van der Elst; Rene Westhovens; Carine Wouters; Philip Moons
Journal:  Clin Rheumatol       Date:  2012-12-14       Impact factor: 2.980

5.  Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents.

Authors:  Christoph Rutishauser; Christina Akré; Joan-Carles Surìs
Journal:  Eur J Pediatr       Date:  2010-12-22       Impact factor: 3.183

Review 6.  Transition of Care in Congenital Heart Disease: Ensuring the Proper Handoff.

Authors:  Angela Lee; Barbara Bailey; Geraldine Cullen-Dean; Sandra Aiello; Joanne Morin; Erwin Oechslin
Journal:  Curr Cardiol Rep       Date:  2017-06       Impact factor: 2.931

Review 7.  Children's experiences of congenital heart disease: a systematic review of qualitative studies.

Authors:  Lauren S H Chong; Dominic A Fitzgerald; Jonathan C Craig; Karine E Manera; Camilla S Hanson; David Celermajer; Julian Ayer; Nadine A Kasparian; Allison Tong
Journal:  Eur J Pediatr       Date:  2018-01-11       Impact factor: 3.183

8.  Attitudes of rheumatology practitioners toward transition and transfer from pediatric to adult healthcare.

Authors:  Deborah Hilderson; Philip Moons; Rene Westhovens; Carine Wouters
Journal:  Rheumatol Int       Date:  2011-12-23       Impact factor: 2.631

Review 9.  So hard to say goodbye: transition from paediatric to adult cardiology care.

Authors:  Adrienne H Kovacs; Brian W McCrindle
Journal:  Nat Rev Cardiol       Date:  2013-11-12       Impact factor: 32.419

Review 10.  Paving the Way to Change for Youth at the Gap between Child and Adolescent and Adult Mental Health Services.

Authors:  Sabina Abidi
Journal:  Can J Psychiatry       Date:  2017-01-01       Impact factor: 4.356

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