Chronic Disease, the Adolescent-Parent Dyad, and Contraception: A Qualitative Study

Adolescents with chronic disease (ACD) are living longer and have similar rates of sexual activity as their healthy peers. Pregnancy is a high risk time for ACD, as it may exacerbate their underlying disease and potentially incur more difficulties in pregnancy and for the fetus. Additionally, ACD and their parents typically co-manage their disease as an interdependent unit in navigating chronic illness, and they do so with varying degrees of concordance in illness management. Often, ACD are presenting to gynecologists only after they have initiated sexual activity and when they have acquired sexually transmitted infections (STIs) or become pregnant. The ideal timing and delivery of the reproductive health conversation for ACD is unknown. Little is known as to how the adolescent-parent dyad navigates the integral topic of reproductive healthcare and where or how it is best integrated into overall care of ACD. This study’s objective was to explore the ACD-parent dyad and how contraception is currently addressed within the context of both the functioning dyad and overall disease management.
We conducted semi-structured, in-depth interviews with ACD and a parent of their choosing. Inclusion criteria were females aged 15-20 years old, English-speaking, has a parent or guardian that has helped co-manage their disease, and has congenital heart disease or solid organ transplant before 8 years of age. Participants were recruited from the Lucile Packard Children’s Hospital pediatric subspecialty clinics and from Facebook support groups. The interview guide was developed utilizing the Adolescent Contraceptive Use theoretical framework and the Theory of Dyadic Illness Management. The subtopics were dyadic structure, sexual and reproductive health, and contraception. The data were analyzed with a combined theory-driven and data-driven process to evaluate a priori theories as well as explore newly developed ones.
Three dyads were interviewed for a total of six interviews. The adolescents and parents were interviewed individually, separate from each other. All of the participating adolescents had congenital heart disease and one had a heart transplant. Their ages ranged from 19-20 years and all chose their mother to participate in the interviews. The dyads had high levels of concordance in appraisal of their medical conditions and their emotional and physical needs. They had varying levels of collaboration in disease management as they were all in different stages of transitioning from pediatric to adult care. None of the adolescents were yet sexually active and one had used hormonal oral contraceptive pills for abnormal uterine bleeding. Adolescents had differing desires for pregnancy and they expressed concern about medical difficulties during pregnancy. Their parents intentionally deferred conversations about pregnancy until the adolescents were older and in serious relationships. The dyads overall reported satisfaction with the conversations with their medical teams about sexual activity and contraception and noted these were very recent conversations. Adolescents felt more in-depth conversations would be best with certain members of their team (e.g., nurse practitioners) or a gynecologist recommended by their specialist. Contraception and reproductive health are important topics for adolescents with chronic disease. The results from this small, first-generation pilot study indicate that these topics are discussed with different members of the medical team and appear to happen later in adolescence during the transition to adult care, typically at 18-20 years old. Participants trust their providers to refer them to a gynecologist for more in-depth conversations.