A qualitative study of sexual and reproductive health communication with adolescent and young adult oncology patients.

Adolescent and young adult patients with cancer (AYAs) identify sexual and reproductive health (SRH) as an important but often neglected aspect of their comprehensive cancer care. The purpose of this study was to explore AYA perceptions and experiences of SRH communication with oncology clinicians. Twenty-three AYA patients and survivors ages 15-25 years from a large academic oncology center participated in semistructured qualitative interviews investigating their experiences discussing SRH issues, including specific topics discussed, conversation barriers and facilitators, suggestions for clinicians on how to improve conversations, and education and resource needs. Interviews were audio recorded, transcribed, and coded using a thematic analysis approach. Interviews with AYAs revealed two primary themes-a need for oncology clinicians to discuss SRH and critical gaps in current SRH communication practices. AYAs reported a need for improved SRH communication for the purposes of general education, addressing specific SRH issues experienced, and understanding the long-term impact of cancer and treatment on SRH. The current communication gaps are exacerbated by patient discomfort initiating conversations and the presence of family members. AYAs shared six key recommendations for clinicians on how to improve SRH communication. AYAs identify a role for oncology clinicians in discussing SRH as a primary aspect of comprehensive health care during cancer treatment and in survivorship; however, multiple gaps and barriers interfere with such discussions. Future efforts must focus on clinician education and training in SRH as well as education and intervention opportunities for AYAs to optimize the care provided.

Frederick NN ，Revette A ，Michaud A ，Bober SL ... -  《-》

Barriers and facilitators to sexual and reproductive health communication between pediatric oncology clinicians and adolescent and young adult patients: The clinician perspective.

Sexual and reproductive health (SRH) is identified by adolescent and young adult (AYA) patients with cancer as an important but often neglected aspect of their comprehensive cancer care. The purpose of this study was to investigate the attitudes and perceptions of pediatric oncology clinicians towards discussing SRH with AYAs, and to understand perceived barriers to effective communication in current practice. Pediatric oncology clinicians (physicians, certified nurse practitioners, and physician assistants) participated in semi-structured qualitative interviews investigating attitudes about SRH communication with AYAs and barriers to such conversations. Twenty-two clinicians participated from seven institutions in the Northeastern United States. Interviews were audio-recorded, transcribed, and coded using a thematic analysis approach. Interviews with pediatric oncology clinicians revealed the following five primary themes: the role for pediatric oncology clinicians to discuss SRH, the focus of current SRH conversations on fertility, the meaning of "sexual health" as safe sex and contraception only, clinician-reported barriers to SRH conversations, and the need for education and support. Communication barriers included lack of knowledge/experience, lack of resources/referrals, low priority, parents/family, patient discomfort, clinician discomfort, time, and lack of rapport. Clinicians identified resource and support needs, including formal education and SRH education materials for patients and families. Although the study participants identified a role for pediatric oncology clinicians in SRH care for AYA patients with cancer, multiple barriers interfere with such discussions taking place on a regular basis. Future efforts must focus on resource development and provider education and training in SRH to optimize the care provided to this unique patient population.

Frederick NN ，Campbell K ，Kenney LB ，Moss K ，Speckhart A ，Bober SL ... -  《-》

Perspectives of adolescent girls with cystic fibrosis and parents on disease-specific sexual and reproductive health education.

Adolescent girls with cystic fibrosis (CF) face significant disease-specific sexual and reproductive health (SRH) concerns that are not typically addressed in routine clinical care. Additionally, there is a paucity of developmentally appropriate CF-specific SRH educational resources for this population. The goal of this study was to explore patient and parent attitudes toward SRH educational resources for adolescent girls with CF. Adolescent girls ages 13-18 years with CF and parents of daughters ages 10-18 years with CF completed individual, semi-structured interviews regarding their experiences and preferences around CF-specific SRH education and care. To facilitate discussion, participants provided feedback on the format and design of existing SRH educational resources. Qualitative analysis was conducted using a thematic analysis approach. We interviewed 26 participants (14 parents and 12 patients). The majority reported they had never discussed SRH in the CF care setting. All participants preferred a comprehensive, online patient educational resource complemented by real patient stories and interactive components. Participants noted that such resources should create a sense of normalcy and community around CF and female SRH. Most desired more frequent communication around SRH between adolescent girls with CF and their healthcare providers as a way to promote SRH knowledge, decision making, and health outcomes. Adolescent girls with CF and their parents desire an online patient educational resource that normalizes SRH and enhances patient-provider communication around these topics. Creation of developmentally appropriate resources would facilitate improved health outcomes around this aspect of comprehensive care in CF.

Kazmerski TM ，Hill K ，Prushinskaya O ，Nelson E ，Greenberg J ，Pitts SA ，Borrero S ，Miller E ，Sawicki GS ... -  《-》

Pediatric hematology and oncology fellow education in sexual and reproductive health: A survey of fellowship program directors in the United States.

Pediatric oncology clinicians identify a need for increased sexual and reproductive health (SRH) education with adolescent and young adult (AYA) cancer patients. By surveying pediatric oncology fellowship directors, this study clarifies the state of current fellowship education about SRH for the AYA patient. A survey was sent to all pediatric oncology fellowship program directors (PDs) in the United States consisting of 13 questions pertaining to three primary SRH domains: sexual health, fertility, and safe sex practices. Descriptive statistics and χ2 were used in data analyses. Sixty-three PDs responded to the survey (91% response rate). Of these, 88% reported having formal instruction regarding fertility, 41% reported curriculum regarding contraception and 30% reported some education regarding sexual health. The curriculum "being too full" was identified as a barrier to education on fertility (29%), sexual health (40%), and safe sex practices (38%). Not being a required or expected part of the program was more likely to be endorsed as a barrier for sexual health (26%) and safe sex practices (30%) compared with fertility (8%) (P < 0.005). Lack of experts to teach was a more frequently endorsed barrier to education on sexual health (47%) compared with either fertility (23%) or safe sex practices (25%) (P < 0.005). This study identifies important gaps in oncology fellow education about SRH. Future research must explore optimal education strategies that are feasible and acceptable by PDs and fellow learners, and effective in optimizing AYA SRH care.

Frederick NN ，Fine E ，Michaud A ，Recklitis CJ ，Bober SL ... -  《-》

"Our girls need to see a path to the future" --perspectives on sexual and reproductive health information among adolescent girls, guardians, and initiation counselors in Mulanje district, Malawi.

Nash K ，O'Malley G ，Geoffroy E ，Schell E ，Bvumbwe A ，Denno DM ... -  《Reproductive Health》