Experiences of communication and information from health care staff regarding reproductive health: a qualitative study of female childhood cancer survivors in sweden

Background With increasing number of childhood cancer survivors, there is a growing population of adult survivors that reach reproductive age. Long-term side effects of cancer treatment can include damage to the reproductive organs and lead to premature ovarian failure. The purpose of the study was to examine female childhood cancer survivors’, participating in long-term follow-up, experiences of communication and information regarding fertility and reproductive health outcomes. We also aimed to investigate how they experienced the transition from pediatric to adult health services. Methods Participants for the study were all part of a longitudinal project, identified through the Long-Term Follow-Up Clinic at the Oncology Department at Sahlgrenska University Hospital, Sweden. Fifty-four female childhood cancer survivors treated with chemotherapy and/or radiotherapy before 18 years of age were included between 2016 and 2018. During the years 2018- 2022, twenty-five of the participants reached the age of 25 and were invited to conduct a semi-structured interview. Twenty-two agreed to participate. The interview includes questions about fertility, collaboration with healthcare and communication regarding reproductive options when diagnosed with cancer. Interview data was analysed inductively using a thematic analysis. Results The analysis of the data resulted in three main themes; (1) Communication challenges, (2) Information about potential infertility and (3) Follow-up – a broader perspective, with a total of 9 subthemes. Many of the women expressed lack of information regarding reproductive health and a disappointment in their follow-up. Conclusion It is evident that the young women have felt a lack of information regarding fertility, reproductive health outcomes and options after their cancer treatment. The results of our study also indicate that transition from pediatric health care to adult health care needs to be facilitated and supported.