Female Young Adult Survivors Research Articles

Greater fertility distress and avoidance relate to poorer decision making about family building after cancer among adolescent and young adult female survivors.

Many adolescent and young adult female (AYA-F) cancer survivors face decisions about family building using reproductive medicine or adoption to achieve parenthood. This study evaluated associations among reproductive distress, avoidance, and family-building decision making and identified sociodemographic and clinical characteristics related to high distress and avoidance. A cross-sectional survey assessed AYA-F survivors' oncofertility experiences. Measures included an investigator-designed Unmet Information Needs scale, Reproductive Concerns After Cancer Scale, Impact of Events Scale-Avoidance subscale, Decision Self-Efficacy scale, and Decision Conflict Scale. Two linear regression models evaluated correlates of decision self-efficacy and decisional conflict about family building after cancer. Bivariate analyses evaluated correlates of avoidance using Pearson's correlation, t-test, and ANOVA. AYA-Fs (N=111) averaged 31-years-old (SD=5.49) and 3years post-treatment (range: 1-23years); 90% were nulliparous. Most common diagnoses were leukemia (24%) and breast cancer (22%). Average decisional conflict was 52.12 (SD=23.87, range: 0-100); 74% of the sample reported DCS scores within the clinically significant range. Higher levels of reproductive distress (B=-0.23, p=0.04) and avoidance (B=-0.24, p=0.02) related to lower decision self-efficacy. Younger age (B=-0.18, p=0.03), greater unmet information needs (B=0.33, p<0.001), and higher levels of reproductive distress (B=0.34, p=0.001) related to worse decisional conflict. Predictors of distress and avoidance were identified. After cancer treatment, high fertility distress and avoidant coping were associated with poorer quality decision making about family building after cancer. Fertility counseling post-treatment should support self-efficacy and constructive coping skills to counteract high distress, maladaptive coping, and facilitate values-based decision making.

Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing.

BackgroundOwing to gonadotoxic cancer treatments, young adult female survivors often report uncertainty about their fertility, reproductive potential, and family-building options after treatment. Roadmap to Parenthood is a web-based decision aid and planning tool for family building after cancer.ObjectiveAs part of a patient-centered development process, this study evaluated the usability of the decision aid website to inform design modifications and improve user experience.MethodsIn total, 2 rounds of usability testing were conducted with the target population of young adult female cancer survivors. During the testing sessions, participants viewed the website twice; first, as a think-aloud exercise, and second, while a researcher interrupted at key points to obtain user feedback. Quantitative and qualitative data were collected to assess website usability. Quantitative measures included the System Usability Scale, WebQual, and eHealth Impact Questionnaire. An exit interview with open-ended questions gathered feedback on likes and dislikes and suggestions for improvement.ResultsParticipants (N=10) were young adult women, with average age of 30.9 (SD 4.51) years, and average time since treatment was 4.44 (SD 3.56) years. Website usability scores improved on the System Usability Scale from “acceptable” in round 1 to “excellent” in round 2 after making design changes based on user feedback (scores of 68 and 89.4, respectively). WebQual scores showed similar improvement from round 1 to round 2 of testing (mean 5.6 to 6.25; range 1-7). On the eHealth Impact Questionnaire, the information and presentation of the website was perceived as comprehensive, easy to understand, and trustworthy. Participants also reported improved confidence to discuss and manage fertility and family-building issues and felt encouraged to play a more active role in managing their fertility. In all, 3 usability themes were identified from the qualitative feedback: ease of use, visibility and navigation, and informational content and usefulness. Overall feedback was positive, and participants reported intentions to use the decision aid website in the future. In total, 10% (1/10) of the participants reported negative emotions when learning about infertility risks and potential family-building challenges.ConclusionsWebsite usability improved after design changes were made in response to user feedback. Young adult female survivors reported positive views about the website and indicated that the decision aid would be useful in decision-making about family building after cancer. Future studies will include further design modifications to consider the emotional experiences of users and any additional navigational features or content to optimize the ease of use and support provided by the tool.

Recruitment and Retention of Older Adolescent and Young Adult Female Survivors of Childhood Cancer in Longitudinal Research

To describe the challenges encountered in the recruitment and retention of a sample of older adolescent and young adult female survivors of childhood cancer for a longitudinal study testing a targeted psychosocial intervention aimed at enhancing hope. Published literature on constructing longitudinal intervention studies and strategies in the recruitment and retention of childhood cancer survivors in research was used to develop the protocol of this study. Using empirical literature to construct the study's design resulted in achieving certain goals for the design, but not in the recruitment and retention of study participants. Using online technology to deliver the intervention and collect data was efficient and effective. Traditional approaches to recruitment and retention of those survivors, however, were not effective. Use of more novel approaches to enroll study participants demonstrated only modest success. Additional research is needed on strategies to successfully recruit and retain older adolescents and young adult female survivors of childhood cancer in longitudinal intervention studies. The improvement in the psychological well-being of female survivors of childhood cancer remains an important outcome in ongoing care. The need to continue to identify creative and effective ways to recruit and retain those survivors is warranted.

POSTTRAUMATIC GROWTH AMONG FEMALE SURVIVORS OF CHILDHOOD SEXUAL ABUSE IN RELATION TO THE PERPETRATOR IDENTITY

The objective of this study was to examine the extent of posttraumatic stress disorder (PTSD) symptomatology and posttraumatic growth in young adult female survivors of childhood sexual abuse in relation to the identity of the perpetrator. Two hundred and forty-six non-clinical female university students were administered self-report questionnaires with regard to negative life events, PTSD symptoms, and posttraumatic growth. A sample of 93 participants who reported having been sexually abused during childhood either by a family member or a stranger were drawn for the study purpose. Comparison between the survivors in relation to the identity of the perpetrator, family member versus a stranger, revealed that the levels of PTSD and posttraumatic growth were both higher among survivors who were sexually abused by a family member compared to those who were sexually abused by a stranger. Mediational analysis revealed that levels of PTSD mediated the identity of the perpetrator effect on posttraumatic growth.

Female Survivors of Dating Violence and their Social Networks

This study embeds dating violence in context. It examines how 130 young adult female survivors of dating violence involved members of their social network in the experience of abuse, how network members responded to them, survivors' satisfaction with these responses and the reasons some network members were not informed. Both quantitative and qualitative data were collected through a questionnaire. Results indicate that the responses of network members serve a supportive and a supervisory function; and these responses are interpreted within a feminist gender analysis framework Implications for prevention and education programs are discussed.