ArticleEuropean journal of pediatrics2017
Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care.
Article in European journal of pediatrics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
15 citing papers in PubMed, 41 citations in OpenAlex.
- Implementation fidelity of a transition program for adolescents with congenital heart disease: the STEPSTONES project.BMC health services research · 2022Trial
- Mechanisms of impact and experiences of a person-centred transition programme for adolescents with CHD: the Stepstones project.BMC health services research · 2021Trial
- Adulting in the Current Era: Piloting an Individualized In-Person Congenital Heart Disease Transition Education Program.Pediatric cardiology · 2026Article
- "Not just about the pump"-providing sexual and reproductive health information to adolescents with heart disease.European journal of pediatrics · 2025Article
- Review
- Multistakeholder Recommendations for Supporting Patients and Families Transitioning From Paediatric to Adult Congenital Heart Disease Care.CJC pediatric and congenital heart disease · 2023Article
- Empowering the Future: Transitioning to Adulthood With Congenital Heart Disease.CJC pediatric and congenital heart disease · 2023Article
- Transitioning from pediatric to adult healthcare with an inborn error of immunity: a qualitative study of the lived experience of youths and their families.Frontiers in immunology · 2023Article
- Navigating liminal spaces together: a qualitative metasynthesis of youth and parent experiences of healthcare transition.Journal of transition medicine · 2023Review
- Destination unknown: Parents and healthcare professionals' perspectives on transition from paediatric to adult care in Down syndrome.Journal of applied research in intellectual disabilities : JARID · 2022Article
- Adolescent Women with Congenital Heart Disease: Self-Reported Reproductive Health Discussions with Health Care Providers.Journal of pediatric and adolescent gynecology · 2022Article
- Understanding of the transition to adult healthcare services among individuals with VACTERL association in Sweden: A qualitative study.PloS one · 2022Article
- Article
- Article
- Youths' Experiences of Transition from Pediatric to Adult Care: An Updated Qualitative Metasynthesis.Journal of pediatric nursingArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer to adult care. We performed interviews in four focus groups with adolescents (14-18 years old) at four university hospitals in Sweden. Data was analysed using qualitative content analysis. The analysis revealed one main category; Becoming a manager of the condition and four subcategories; Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. The adolescents' ages differentiated the discussion in the groups. The older adolescents seemed to have more interest in transition planning, information and transfer. The younger described more frustrations about communication and handling the disease.
conclusionTo become a manager of the CHD in daily life, the adolescents want disease specific knowledge, which should be communicated in a developmentally appropriate way. Adolescents want to participate and be involved in the transition process. They need support and guidance in how to communicate their CHD. Parental support is fundamental but it change over time. Moreover, peer-support is becoming more significant during the transition process. What is Known: • Transition during adolescence and transfer to adult care for adolescents with CHD is complex, and there is a shift in roles. • Adolescents often have poor knowledge and understanding about their heart condition and the consequences. What is New: • Adolescents call for disease specific information regarding health issues of importance for them in daily life. • Communicating the disease with other is a challenge- peer support from other adolescents with CHD could be a facilitator.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.