Discussing sexual and reproductive health is universally accepted among healthcare providers caring for adolescents with heart disease, but prioritization varies, and providers need enhanced knowledge, skills, and strategies to customize information while upholding adolescents' rights.
Key Findings
Results
Healthcare providers (HCPs) universally accepted the importance of discussing sexual and reproductive health (SRH) with adolescents with heart disease, but prioritization of these discussions varied among providers.
The study used an explorative design with semi-structured interviews and qualitative content analysis using the Graneheim and Lundman method.
Interviews revealed 'different opinions and experiences' among HCPs regarding SRH discussions.
While universal acceptance was found, actual prioritization of SRH topics differed across providers and settings.
Results
Four main categories emerged from the qualitative analysis describing HCPs' experiences of informing adolescents with heart disease about SRH.
The four categories were: (1) organizational culture, (2) healthcare professionals' perception of adolescents' needs, (3) skills and ability are essential, and (4) parents' influence on conversation.
The qualitative content analysis method by Graneheim and Lundman was applied to analyze interview data.
The interviews 'provided a wealth of data, revealing different opinions and experiences.'
Results
Organizational culture was identified as a key factor shaping how and whether SRH information was provided to adolescents with heart disease.
Organizational culture emerged as one of the four main categories from the qualitative analysis.
The setting and timing of counselling sessions were identified as important considerations for delivering SRH information.
HCPs indicated that SRH information needs to be 'tailored to the time and setting of the counselling session.'
Results
HCPs identified gaps in their own knowledge and skills regarding how to provide SRH information to adolescents with congenital heart disease.
Skills and ability were identified as essential in one of the four main categories.
HCPs reported 'looking for more knowledge on the subject' of providing SRH information.
Enhanced knowledge and skills in SRH were deemed essential, 'including strategies to overcome barriers.'
Results
Parents' involvement in clinical conversations was identified as both an influence and a potential barrier to SRH discussions with adolescents.
Parents' influence on conversation was one of the four main categories identified in the analysis.
HCPs need strategies to 'respectfully involve parents' while still upholding adolescents' rights to SRH information.
The adolescent's right to SRH information must 'always be upheld' even when navigating parental presence.
Conclusions
HCPs recognized the need to customize SRH information for adolescents with heart disease, considering individual needs, timing, and setting.
HCPs' perception of adolescents' needs was one of the four main analytical categories.
The conclusion states HCPs 'must customize information, consider the timing and setting of the conversation.'
The study context notes that more adolescents with congenital heart disease are reaching adulthood and reproductive age, increasing the relevance of this information.
What This Means
This research explores how healthcare providers (doctors, nurses, and other clinicians) experience and approach conversations about sexual and reproductive health with teenagers who have heart disease. As medical advances mean more young people with congenital heart disease are living into adulthood, these conversations have become increasingly important. The study used in-depth interviews with healthcare providers and found that while nearly all of them agreed these conversations were important, how much they actually prioritized them in practice varied considerably. Four key themes shaped providers' experiences: the culture of their workplace or organization, how they perceived what teenagers needed, their own skills and confidence, and how parents factored into the discussions.
A notable finding was that healthcare providers themselves felt underprepared and were actively seeking more training and knowledge on how to discuss sexual and reproductive health with this specific patient group. They recognized that the information needs to be adapted to the individual teenager and to the context of the appointment — not delivered in a one-size-fits-all way. Parents' presence in consultations was also identified as something that needed careful handling, requiring strategies to respectfully include parents while still ensuring teenagers received the information they had a right to.
This research suggests that simply agreeing that these conversations should happen is not enough — healthcare systems need to actively support providers with better training, clearer guidelines, and organizational structures that make space for sexual and reproductive health discussions as a routine part of cardiac care for adolescents. Teenagers with heart disease have the same developmental needs and rights to health information as any other young person, and their specific medical circumstances make tailored, timely guidance especially important as they transition toward adult life.
Bay A, Vidarsdottir H, Jangsten E, Burström &. (2025). "Not just about the pump"-providing sexual and reproductive health information to adolescents with heart disease.. European journal of pediatrics. https://doi.org/10.1007/s00431-025-06357-5