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“Not just about the pump”: providing sexual and reproductive health information to adolescents with heart disease
Department of Nursing, Umea University, 90736 Umea (SWE).
Department of Pediatric Cardiology, Astrid Lindgren Children’s Hospital, Karolinska University Hospital, Stockholm (SWE), Department for Women’s and Children’s Health, Karolinska Institutet, Stockholm (SWE).
University West, Department of Health Sciences, Section for nursing - graduate level.
Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm (SWE).
2025 (English)In: European Journal of Pediatrics, ISSN 0340-6199, E-ISSN 1432-1076, Vol. 184, no 8, p. 1-9, article id 520Article in journal (Refereed) Published
Abstract [en]

More adolescents with congenital heart disease (CHD) are reaching adulthood and reproductive age. They face challenges transitioning from pediatric to adult health care and need to manage their health and developmental goals. The 2030 Agenda emphasizes a holistic approach to sexual and reproductive health rights (SRHR), aiming to provide accessible information to adolescents. Healthcare providers (HCPs) must offer appropriate information about CHD and SRHR issues.

This study aimed to describe HCPs’ experiences of informing adolescents with heart disease about SRH. An explorative study with a descriptive design using semi-structured interviews. The qualitative content analysis method by Graneheim and Lundman was used to analyze the data. The interviews provided a wealth of data, revealing different opinions and experiences.

The analysis resulted in four main categories: (1) organizational culture, (2) health care professionals’ perception of adolescents’ needs, (3) skills and ability are essential, and (4) parents’ influence on conversation

Conclusion: Discussing SRH is universally accepted among HCPs, but prioritization varies. HCPs must customize information, consider the timing and setting of the conversation. Enhanced knowledge and skills in SRH are essential, including strategies to overcome barriers and respectfully involve parents. Crucially, adolescents’ rights to SRH information must always be upheld.

Place, publisher, year, edition, pages
2025. Vol. 184, no 8, p. 1-9, article id 520
Keywords [en]
Congenital heart disease, Sexual and reproductive health, Adolescence, Information
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-24083DOI: 10.1007/s00431-025-06357-5ISI: 001542584000003Scopus ID: 2-s2.0-105012399169OAI: oai:DiVA.org:hv-24083DiVA, id: diva2:1994501
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CC BY 4.0

Available from: 2025-09-03 Created: 2025-09-03 Last updated: 2026-01-21

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Jangsten, Elisabeth

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