Adolescent and parent perspectives prior to involvement in a Fontan transition program
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Karin Du Plessis
,
Evelyn Culnane
Abstract
Background
Successful transition to adult healthcare is particularly important for congenital heart disease (CHD) patients who have undergone palliative surgery, as they risk adverse events if not followed closely. This study examines young people at the worst end of the CHD spectrum who are born with a single ventricle (pumping heart chamber), and who undergo a series of operations that culminate in the Fontan surgical procedure.
Purpose
To explore adolescents with a Fontan circulation, and their parents’, readiness for transition to adult care and pre-implementation of a transition program.
Methods
Seventeen adolescents (15–18 years) and 15 of their parents completed questionnaires at the start of their first transition clinic.
Results
Adolescents reported poor knowledge about their Fontan circulation, and 41% had a poor understanding of the purpose of their medications/treatments. Over half of the adolescents had poor knowledge around medical help-seeking (when, who, how). Most reported feeling comfortable with discussing their medical issues with their cardiologist, but considerably less so about sensitive adolescent issues, in particular, emotional wellbeing. Parents reported high levels of anxiety around transition to adult care services.
Conclusion
Findings pre-program indicate poor adolescent health knowledge, a lack of focus in health services on emotional wellbeing and high parental anxiety. These findings highlight the need for dedicated programs that focus on early preparation, parental involvement and acknowledgment, transition as a process, strong integration and prioritisation in the health system with a youth-friendly and holistic focus, in particular, around emotional wellbeing.
Acknowledgments
The authors thank our research assistants for their invaluable support in the creation and maintenance of the Australian and New Zealand Fontan Registry. The authors acknowledge support provided to the Murdoch Childrens Research Institute by the Victorian Government’s Operational Infrastructure Support Program.
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Financial support: This work was supported by a National Health and Medical Research Council (NHMRC) Partnership Grant (1076849). The Victorian Government’s Operational Infrastructure Support Program supported this research project.
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Conflicts of interest: None.
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Ethical standards: The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national guidelines on human experimentation in Australia and with the Helsinki Declaration of 1975, as revised in 2008, and has been approved by the Royal Children’s Hospital Human Research Ethics Committee.
References
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©2019 Walter de Gruyter GmbH, Berlin/Boston
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Articles in the same Issue
- Editorial
- Adverse effects of stimulant medications in children and adolescents: focus on drug abuse
- Short Communication
- Adolescent and parent perspectives prior to involvement in a Fontan transition program
- Reviews
- Adolescent suicide as a global public health issue
- (Health-related) quality of life and psychosocial factors in adolescents with chronic disease: a systematic literature review
- Original Articles
- Clustering of chronic diseases risk factors among adolescents: a quasi-experimental study in Sousse, Tunisia
- Blood, joy and tears: menarche narratives of undergraduate females in a selected in Nigeria Private University
- Renal lymphangiectasia treated with percutaneous drainage and sclerotherapy
- Trichotillomania in celiac disease patient refractory to iron replacement
- Metabolic syndrome in Iranian adolescents with polycystic ovary syndrome
- Looks can be deceiving: body image dissatisfaction relates to social anxiety through fear of negative evaluation
- Excessive exercise among adolescents with eating disorders: examination of psychological and demographic variables
- Diet quality of adolescents with eating disorders
- A picture of Indian adolescent mental health: an analysis from three urban secondary schools
- From child to grown up in a medical world: developing an adolescent transition programme at a Norwegian University hospital
- Household food insecurity and its association with morbidity report among school adolescent in Jimma zone, Ethiopia
- The effects of introducing Tabata interval training and stability exercises to school children as a school-based intervention program
