Reproduction and Genetic Responsibility: An Interpretive Description of Reproductive Decision-Making for Young People With Li-Fraumeni Syndrome

The reproductive decision-making of young people (aged 15–39 years) with Li-Fraumeni syndrome (LFS), an early onset inherited cancer syndrome, has not been studied in depth. Using interpretive description methodology, we conducted semi-structured interviews with 30 young Australians (mean age 25.5 years) diagnosed with LFS or at 50% genetic risk. With reflexive thematic analysis, we show how young people’s reproductive decision-making and ideals for family formation were shaped by a sense of genetic responsibility to ensure the health of future biological kin. Reproductive technology provided choices for family formation in the context of LFS and also complicated reproductive decisions, as these choices were difficult to understand, make, or carry out. We uphold that reproductive decision-making when living with LFS is a profoundly moral practice that may pose significant challenges for young people navigating their formative years. We offer genetic counseling practice recommendations to support individuals with LFS when making reproductive decisions.

A Review of Breast Cancer Risk Factors in Adolescents and Young Adults

Cancer in adolescents and young adults (AYAs) deserves special consideration for several reasons. AYA cancers encompass paediatric malignancies that present at an older age than expected, or early-onset of cancers that are typically observed in adults. However, disease diagnosed in the AYA population is distinct to those same cancers which are diagnosed in a paediatric or older adult setting. Worse disease-free and overall survival outcomes are observed in the AYA setting, and the incidence of AYA cancers is increasing. Knowledge of an individual’s underlying cancer predisposition can influence their clinical care and may facilitate early tumour surveillance strategies and cascade testing of at-risk relatives. This information can further influence reproductive decision making. In this review we discuss the risk factors contributing to AYA breast cancer, such as heritable predisposition, environmental, and lifestyle factors. We also describe a number of risk models which incorporate genetic factors that aid clinicians in quantifying an individual’s lifetime risk of disease.

Motherhood and decision-making among women living with HIV in developed countries: a systematic review with qualitative research synthesis

Background Women living with HIV (WLH) lack evidence-based information about reproductive options while managing pressures from family, clinicians, and communities to give up the idea of having children. As the reproduction intentions of WLH are not well understood, stigmatizing behaviors force them to hide their disease to avoid rejection by their family, partner, and social networks. Compliance with social norms, fear of stigma, and discrimination influence their experience. Current research is individual qualitative studies lacking the synthesis perspective necessary to guide intervention development. The purpose of this study was to synthesize the evidence to explain the reproductive decision-making process for WLH in developed countries. Methods A systematic review with qualitative research synthesis was conducted through searches in 10 electronic databases (CINAHL, EMBASE, MEDLINE, Scopus, Social Science Citation Index, Web of Science, Google Scholar, Cuidatge, Cuiden Enfispo, and SciELO). Studies published in journals from 1995 to 2019 with qualitative data about reproductive decision-making among WLH in developed countries were eligible for inclusion. Developed country was operationalized by membership in the OECD for comparative conditions of social wellbeing and economic stability. The CASP and JBI checklists for qualitative research were used to assess study quality and methodological integrity. Thematic analysis and qualitative meta-summary techniques were used for the synthesis. Results Twenty studies from 12 developed countries were included in the synthesis. Findings were organized into 3 meta-themes from 15 themes and 45 subthemes, including: (1) Shattered identity, (2) Barriers, inequities, and misinformation, (3) Coping, resiliency, and support. Reproductive decision-making was perceived as a complex process influenced by facilitators and barriers. The facilitators helped WLH cope with their new situation to become more resilient, while the barriers made their situation more difficult to manage. Conclusion WLH encounter reproductive decision-making with knowledge deficits and limited social support. An integrated approach to holistic care with comprehensive multidisciplinary counseling is needed to support WLH. Clinicians could benefit from professional development to learn how to be authentically present for WLH, including engaging in conversations, demonstrating compassion, and understanding situations. Evidence-based clinical practice guidelines need to be tailored for the family planning and sexual health needs of WLH.

Which measures matter? A behavioral ecology view of “market integration” among the matrilineal Mosuo of Southwest China

Market integration (MI) is a complex process through which individuals transition from relatively subsistence-based to market-oriented activities. Changes associated with MI alter the landscapes of individual health and reproductive decision-making. While the consequences of MI are often easily detected, the specific pathways through which MI affects decision-making are context-dependent and under-investigated. We employed an information-theoretic model selection approach to characterize relationships between multiple indicators of MI and three outcomes commonly associated with MI, waist circumference (n = 431), systolic blood pressure (n = 472), and age at first reproduction (n = 974), among adult matrilineal Mosuo participants from 505 households in six villages in southwest China. Different MI indicators, distributed across individual, household, and community levels of social organization, predicted these three outcomes, demonstrating that individuals’ personal circumstances, household structure, and community affect how they experience and respond to MI. We emphasize the importance of identifying and measuring multiple context-appropriate indicators of MI across levels of social organization. Theoretical frameworks that situate hypotheses of MI within specific social, cultural, and historical contexts will be most capable of identifying specific pathways through which multiple elements of MI affect different domains of decision making.

Balancing fertility and livelihood diversity in mixed economies

Mixed economies provide a unique context for testing theories of fertility change. Because they have a stake in two traditions, mixed-economy households balance the demands of both a labor-based subsistence economy, which benefits from a large family, and a wage-labor economy, which benefits from reduced fertility. Additionally, household size changes over the course of its life-cycle and shapes available economic opportunities. Here we argue that in mixed economies, fertility may reflect opportunities for livelihood diversity rather than simply responding to the restricted socioeconomic benefits of small families. While low fertility may in some cases have an economic benefit, low fertility can also limit the livelihood diversity of a household which is a key strategy for long-term economic success. We test this prediction with longitudinal data from a Maya community undergoing both a sustained decline in fertility and rapid integration into the market economy. Using household-level fertility, number of adults, and livelihood diversity at two time points, we find that household size is positively related to livelihood diversity, which in turn is positively related to household income per-capita. However, household size also has a negative association with income per capita. The results reflect a balancing act whereby households attempt to maximize the economic diversity with as few members as possible. Broadly, these results suggest that theories of fertility decline must account for how households pool resources and diversify economic activities in the face of increasing market integration, treating fertility as both an outcome and an input into economic and reproductive decision-making.

Partners of female patients with rheumatoid arthritis and reproductive decision making: a Constructivist Grounded Theory study

Objectives Partners of patients with rheumatoid arthritis (RA) often take on supportive roles given the debilitating nature of RA. Our objective was to explore the perspectives, attitudes, and experiences of partners of female patients with RA regarding reproductive experiences and decision making. Methods We conducted a qualitative study involving semi-structured interviews with partners of female patients with RA. We defined a ‘partner’ as an individual within a romantic relationship. Constructivist grounded theory was applied to interview transcripts to identify and conceptualize themes. Results We interviewed 10 partners of female patients with RA (10 males; mean age, 35 [23–56]) of which 40% had at least one child with a female patient with RA and did not desire additional children. We identified four themes representing stages of reproductive decision making: (1) developing an understanding of RA, (2) contemplating future family decision making, (3) initiating reproductive decision making with partner, and (4) reflecting on past reproductive experiences. Participants contemplated their attitudes and perspectives towards pregnancy and employed available information to support their partner’s medication decisions. When reflecting on their reproductive experiences, participants shared the impacts of past reproductive decisions on their romantic relationship and their mental health and wellbeing. Conclusion Our study highlights the need for comprehensive supports for both female patients with RA and their partners at all stages of reproductive decision making. Healthcare providers can identify opportunities for intervention that involves female patients with RA and their partners to minimize stress and its negative impacts on the family.

Extrinsic and Existential Mortality Risk in Reproductive Decision-Making: Examining the Effects of COVID-19 Experience and Climate Change Beliefs

While the COVID-19 pandemic has presented an immediate risk to human life around the world, climate change poses an arguably greater—although less immediate—threat to our species’ survival. Within the framework of life-history theory (LHT), this pre-registered study investigated whether extrinsic risk (i.e., external factors that pose a risk to an individual’s life, e.g., COVID-19) and existential risk (i.e., risks with outcomes that threaten the existence of humans as a species, e.g., climate change) had similar or different relationships with reproductive decision-making. A UK representative sample of 325 participants between 18 and 35 years of age was asked to indicate their ideal number of children, ideal age to start having children, and whether their desire for a child had recently changed. Participants were asked about their experiences of COVID-19 and given a series of scales with which to assess their beliefs about climate change. In support of LHT, the study found evidence that knowing people who had been hospitalized with or died of COVID-19 was associated with a greater ideal number of children. Conversely, there was no clear evidence of a relationship between climate change beliefs and reproductive decision-making. The repercussions for understanding how we interpret and respond to different forms of mortality risk are discussed.

Knowing and Not Knowing about Fertility: Childless Women and Age-Related Fertility Decline

Knowledge claims may play an essential role in reproductive decision-making, as individuals seek out, assess, reject, and use information about health and fertility gathered from numerous sources. This paper focuses specifically on childless women’s self-perceptions of knowledge about infertility and age-related fertility decline. How knowledgeable do childless women perceive themselves to be about fertility and infertility in general, and from where they do they obtain this knowledge? Furthermore, how knowledgeable do childless women perceive themselves to be about their own fertility and ability to conceive, and to what do they attribute this knowledge? Data for this project was gathered through semi-structured interviews with 72 childless American women; the interviews were inductively and thematically coded using qualitative-analysis software. Childless women assessed their general knowledge of fertility as confident, self-doubting, or novices, and they claimed multiple sources as the basis of this knowledge, including formal education and training, media and popular culture, and family members and peers. When assessing knowledge about their own fecundity, the women tended to rely on two additional sources: biomedical diagnostics and embodied knowledge. Childless women’s awareness of average statistics of age-related fertility decline did not necessarily translate to individual self-knowledge about their own bodies and fecundity. Because knowledge claims were based on multiple information sources given unequal weight, this raises questions about authoritative knowledge—that is, the knowledge that “counts” for women as they make decisions regarding their future childbearing.