Building Capacity for Research on Community Doula Care: A Stakeholder-Engaged Process in California.

PURPOSE: In an effort to address persistent inequities in maternal and infant health, policymakers and advocates have pushed to expand access to doula care. Several states, including California, now cover doula services through Medicaid. As coverage expands, research on the impact of doula care will likely increase. To develop best practices for research, it is critical to engage community doulas, clients, and other key stakeholders. DESCRIPTION: Our overarching goal was to build capacity for future doula- and client-centered research on community doula care. First, we established a Steering Committee with members from seven relevant stakeholder groups: community doulas, former or potential doula clients, clinicians, payers, advocates, researchers, and public health professionals. Second, we conducted a needs assessment to identify and understand stakeholders' needs and values for research on community doula care. Findings from the needs assessment informed our third step, conducting a research prioritization to develop a shared research agenda related to community doula care with the Steering Committee. We adapted the Research Prioritization by Affected Communities protocol to guide this process, which resulted in a final list of 21 priority research questions. Lastly, we offered a training to increase capacity among community doulas to engage in research on community doula care. ASSESSMENT: Our findings provide direction for those interested in conducting research on doula care, as well as policymakers and funders. CONCLUSION: The findings of our stakeholder-engaged process provide a roadmap that will lead to equity-oriented research centering clients, doulas, and their communities.

The contributions of rare inherited and polygenic risk to ASD in multiplex families.

Autism spectrum disorder (ASD) has a complex genetic architecture involving contributions from both de novo and inherited variation. Few studies have been designed to address the role of rare inherited variation or its interaction with common polygenic risk in ASD. Here, we performed whole-genome sequencing of the largest cohort of multiplex families to date, consisting of 4,551 individuals in 1,004 families having two or more autistic children. Using this study design, we identify seven previously unrecognized ASD risk genes supported by a majority of rare inherited variants, finding support for a total of 74 genes in our cohort and a total of 152 genes after combined analysis with other studies. Autistic children from multiplex families demonstrate an increased burden of rare inherited protein-truncating variants in known ASD risk genes. We also find that ASD polygenic score (PGS) is overtransmitted from nonautistic parents to autistic children who also harbor rare inherited variants, consistent with combinatorial effects in the offspring, which may explain the reduced penetrance of these rare variants in parents. We also observe that in addition to social dysfunction, language delay is associated with ASD PGS overtransmission. These results are consistent with an additive complex genetic risk architecture of ASD involving rare and common variation and further suggest that language delay is a core biological feature of ASD.

Supporting Birthing People and Supporting Doulas: The Impact of the COVID-19 Pandemic on a Community-Based Doula Organization in San Francisco.

Background: Beginning in March 2020, health care systems in the United States restricted the number of support people who could be present during pregnancy-related care to reduce the spread of COVID-19. We aimed to describe how SisterWeb, a community-based doula organization that employs Black, Pacific Islander, and Latinx doulas in San Francisco, California, adapted to the COVID-19 pandemic. Methods: As part of process and outcome evaluations conducted through an academic-community partnership, we interviewed SisterWeb doulas, mentors, and leaders in 2020, 2021, and 2022 (n=26 interviews). We identified preliminary themes using the Rapid Assessment Process and then conducted thematic analysis of data related to COVID-19. Results: SisterWeb leadership remained committed to safeguarding doulas by shifting to virtual support until doulas were onboarded as benefitted employees. Doulas reported hospital policies impacted clients' pregnancy-related care. Initially, doulas adapted to virtual support by connecting with clients more frequently through phone and text. When permitted to meet in person, doulas adjusted to client preference. Finally, as the pandemic impacted doulas' well-being, they turned to mentors for emotional support. Discussion and Health Equity Implications: This analysis contributes to a growing body of literature describing doulas' experiences during the pandemic. By shifting to virtual support, SisterWeb leaders prioritized the health, safety, and financial stability of doulas, who were members of communities disproportionately impacted by COVID-19. Our findings suggest that public health guidance, organizational COVID-19 precautions, and hospital policies hindered SisterWeb's goal of ensuring clients receive equitable medical care. In addition, we found that emotional support for doulas is vital to their work.

"They're gonna be there to advocate for me so I'm not by myself": A qualitative analysis of Black women's motivations for seeking and experiences with community doula care.

PROBLEM: In the United States, Black women are disproportionately impacted by inequities in maternal health. BACKGROUND: Community doula support may improve birth outcomes and experiences, including lower rates of preterm birth and low birthweight and increases in positive birthing experiences. Few studies have explored client experiences with doula care, specifically community doula care. AIM: To explore Black doula clients' motivations for seeking and experiences with community doula care. METHODS: Data are from a mixed methods process evaluation of an organization providing free community doula services in San Francisco, California. We conducted two rounds of qualitative interviews with doula clients who identified as Black or Pacific Islander between August 2019 and March 2020. Interviews explored clients' knowledge of, experiences with, and motivations for seeking doula care and their perceptions of the services they received. We utilized a Rapid Assessment Process to synthesize findings and thematic analysis. FINDINGS: Clients' motivations for seeking doula care included general lack of support and knowledge of mistreatment experienced by Black women in hospital settings. Doulas provided support in the form of information about the perinatal period and clients' rights, advocacy in hospital settings, and connection to resources beyond pregnancy and birth. Some clients described doulas as helping them stay focused and make decisions during difficult labor experiences and described positive birth experiences despite experiencing complications. CONCLUSION: Community doulas play an instrumental role in the birth experiences of Black women and birthing people. Efforts should be made to expand access to this needed support via policy and hospital practices.

Community perspectives on pharmacist-prescribed hormonal contraception in rural California.

OBJECTIVES: In the United States, numerous states have enabled pharmacists to prescribe hormonal contraception. Little research focuses on the perspectives of potential users of this service in rural communities. This study sought to describe awareness of, interest in, acceptability of, and support for pharmacist-prescribed contraception in a rural California county. STUDY DESIGN: We conducted a community-based survey in 2019-20 in Tulare County, California. Researchers partnered with community members to design, implement, and analyze the survey. We recruited respondents who were ages 15 to 44 and assigned female sex at birth, using passive community-based approaches, social media advertisements, and social networks. Analyses focused on 177 respondents with a potential future need for contraception. RESULTS: Thirty-one percent of respondents were aware that pharmacists could prescribe hormonal contraception in California, with more accurate knowledge among older respondents (p = 0.015). After receiving brief educational information about pharmacist-prescribed contraception, respondents expressed high levels of support and acceptability: they perceived pharmacist-prescribed contraception to be safe, time saving, and more convenient. Respondents were more comfortable talking about contraception with traditional contraceptive care providers compared to asking pharmacists questions about contraception. Fifty-seven percent were somewhat or very interested in obtaining contraception from a pharmacist, with higher levels of interest among those who preferred to use a different method. CONCLUSION: Awareness of pharmacist-prescribed contraception in a rural California community was low, though people are supportive of and interested in utilizing this service. This research suggests that increased availability of pharmacist-prescribed contraception could support individuals' reproductive self-determination and address gaps in access. IMPLICATIONS: Despite limited awareness of pharmacist-prescribed contraception, interest in using and community support for this service was high in a rural California community. This analysis suggests that increased availability of pharmacist-prescribed contraception could support reproductive self-determination and address access barriers, particularly for people whose contraceptive needs are not currently being met.

Barriers and Facilitators to the Implementation of a Community Doula Program for Black and Pacific Islander Pregnant People in San Francisco: Findings from a Partnered Process Evaluation.

INTRODUCTION: Increasingly, community-based models of doula care are receiving attention as possible interventions to address racial inequities in maternal health care experiences and outcomes. In 2018, community-based organization SisterWeb launched to provide free culturally congruent community doula care to advance birth equity for Black and Pacific Islander pregnant people, with funding from the San Francisco Department of Public Health. We conducted a process evaluation of SisterWeb's first 1.5 years of existence to identify multilevel barriers and facilitators to implementation of their programs. METHODS: Guided by the Equitable Evaluation Framework™, we conducted 46 in-depth interviews with individuals from 5 groups: SisterWeb leadership, doulas, doula mentors, and clients, and external stakeholders. RESULTS: Barriers included having diverse clientele groups with unique needs, an ineffective payment model, and simultaneously building an organization and developing and implementing programs. Facilitators included the presence of established strategic partnerships, positive reception of services due to an unmet need for culturally and linguistically congruent pregnancy and birth support among SisterWeb's clients, a clear organizational vision and mission, and a unique doula cohort model. DISCUSSION: Our findings suggest developing community doula programs pay close attention to the difference between launching a program versus an organization, including the required resources of each, the sustainability of payment models for community doulas, and the provision of culturally relevant, needed services within priority communities. Furthermore, strategic partnerships with maternal health stakeholders in birthing sites, particularly hospitals, are vital to the success of a community doula program.

"My 9 to 5 Job Is Birth Work": A Case Study of Two Compensation Approaches for Community Doula Care.

With the increased policy emphasis on promoting doula care to advance birth equity in the United States, there is a vital need to identify sustainable and equitable approaches for compensation of community doulas, who serve clients experiencing the greatest barriers to optimal pregnancy-related outcomes. This case study explores two different approaches for compensating doulas (contractor versus hourly employment with benefits) utilized by SisterWeb San Francisco Community Doula Network in San Francisco, California. We conducted qualitative interviews with SisterWeb doulas in 2020 and 2021 and organizational leaders in 2020. Overall, leaders and doulas reported that the contractor approach, in which doulas were paid a flat fee per client, did not adequately compensate doulas, who regularly attend trainings and provide additional support for their clients (e.g., referrals to promote housing and food security). Additionally, this approach did not provide doulas with healthcare benefits, which was especially concerning during the COVID-19 pandemic. As hourly, benefited employees, doulas experienced a greater sense of financial security and wellbeing from receiving consistent pay, compensation for all time worked, and benefits such as health insurance and sick leave, allowing some to dedicate themselves to birth work. Our study suggests that efforts to promote community doula care must integrate structural solutions to provide appropriate compensation and benefits to doulas, simultaneously advancing birth equity and equitable labor conditions for community doulas.

Structural Inequity and Pregnancy Desires in Emerging Adulthood.

Public health discourses often claim that delaying pregnancy is associated with social and economic benefits. Yet research suggests that, for young people, structural inequity is most influential in future outcomes, regardless of childbearing. We conducted in-depth interviews with 50 young women (ages 18-24) and their male partners (n = 100) and investigated the influence of structural inequity on pregnancy desires and plans. Three themes emerged, stratified by social advantage. In the "Things Will Be Different Later" theme, socially advantaged participants envisioned that their future lives would surely be different due to achievement of educational, professional, and economic goals; thus, their pregnancy plans aligned with their desires, often reflected in use of highly effective contraception. In the "I Don't Have Everything I Need" theme, participants expressed delaying desired pregnancies (primarily through condom use) until they could contend with structural barriers. Their pregnancy plans, shifted by way of structural inequity, were not aligned with their desires. Under the "I'll Never Have Everything I Need" theme, socially disadvantaged participants expressed significant doubt about ever realizing ideal circumstances for pregnancy preparedness; as pregnancy prevention was not salient, these participants used condoms or no contraception. This analysis indicates that structural inequities constrain reproductive self-determination in emerging adulthood, creating a chasm between desired and actual childbearing that was reflected in contraceptive decision-making. Public health narratives emphasizing the importance of pregnancy prevention for socially disadvantaged groups without addressing the manifestation of structural inequity in their lives perpetuate reproductive oppression vis-à-vis emphasis on contraceptive use to ensure future economic success.

Changes in expectation of relationship permanence, pregnancy acceptability and desire, and contraceptive use over time among young Latino/a women and men: An exploratory analysis.

OBJECTIVE: We longitudinally assess associations between changes in expectation of relationship permanence-a measure that incorporates both relationship duration and commitment-pregnancy desire and acceptability, and highly effective contraception use among young U.S. Latino/as. STUDY DESIGN: We used multivariable logistic regression to analyze associations between changes in relationship factors, pregnancy acceptability and desire, and contraceptive method use over 6 months among 299 U.S. Latino/a women and men (ages 18-34) in relationships in a longitudinal study (retention rate: 32.4%). RESULTS: Respondents who found a pregnancy less acceptable at endline than at baseline were more likely to use highly effective contraception at endline (OR 2.97, 95% CI 1.09, 8.08). Respondents estimating an increase in relationship permanence more than one standard deviation of the mean were 4.90 (95% CI 1.17, 20.55) times more likely to use highly effective contraception at endline, compared to those without a change in estimation of relationship permanence. CONCLUSION: In this longitudinal study of young adult Latino/as in relationships, we found associations between changes in respondents' perceptions of the acceptability of a pregnancy and expectation of the permanence of their relationship and highly effective contraceptive use. Our findings reiterate the complicated, intertwined links between relationship dynamics, pregnancy orientation, contraception, and time. IMPLICATIONS: The significance of decreased pregnancy acceptability (but not desire) for using highly effective contraception suggests the importance of acknowledging pregnancy acceptability in contraceptive counseling, particularly because providers are more likely to direct Latino/a young adults towards methods that may not fulfill their contraceptive desires. Including discussion of young people's expectations of relationship permanence may also be meaningful in counseling.

"We Kind of Met In-Between": A Qualitative Analysis of Young Couples' Relationship Dynamics and Negotiations About Pregnancy Intentions.

CONTEXT: The literature on reproductive decision making often focuses on women and neglects the role of men and the importance of relationship context. Research with couples is vital to understanding joint decision making regarding having children at various stages of a couple's relationship and an individual's life course. METHODS: In-depth, individual interviews were conducted with a socioeconomically, racially and ethnically diverse sample of 50 young heterosexual women and their male partners in northern California in 2015-2016. A dyadic, thematic analytic approach was used to examine whether and how prospective pregnancy intentions and current pregnancy desires are negotiated at the couple level, and how relationship dynamics influence any negotiation and decision-making processes. RESULTS: Twenty-three couples described engaging in joint pregnancy decision making, which required purposeful communication and, for some, compromise and acceptance. For nearly all of these couples, these processes led to aligned prospective pregnancy intentions, even when current pregnancy desires differed. The remaining 27 couples described individual pregnancy decision-making processes; many respondents reported intentions that aligned with their partner's by happenstance, despite some respondents having avoided communicating their desires to their partner. Some of these couples faced relationship difficulties, including poor communication, leading some participants to misinterpret or be unaware of their partner's pregnancy intentions and desires. CONCLUSIONS: The relationship context is important in the formulation of prospective pregnancy intentions among young people. Counseling protocols, interventions and policies that attend to the complex factors that influence young couples' pregnancy decision making are needed to better help couples attain their reproductive goals.

No Perfect Method: Exploring How Past Contraceptive Methods Influence Current Attitudes Toward Intrauterine Devices.

Little research on contraceptive decision-making takes a holistic perspective to understand women's contraceptive journeys throughout the reproductive life course. This analysis investigated how Black and Latina women's past experiences with contraceptive use and acquisition impact their feelings and attitudes toward future use of intrauterine devices (IUDs). We utilized data from in-depth interviews that explored contraceptive decision-making and knowledge of, interest in, and attitudes toward IUDs among 38 young Black and Latina women collected in 2013 in the San Francisco Bay Area. Here, we focused on the IUD decision-making process among a subsample of 32 women who were not using or had not previously used an IUD. Overall, we found a strong link between past contraceptive experiences and attitudes regarding future use of IUDs. Notably, participants often referenced experiences of side effects with previous methods when explaining their interest-or lack thereof-in IUD use, as well as made links between contraceptive attributes they had experienced positively and attributes of the IUD. A minority of participants described being satisfied with their current method, resulting in a lack of interest in considering IUD use. More than half of participants described distrust, either in healthcare providers owing to previous negative interactions and contraceptive failures of provider-recommended methods or owing to family members' and friends' negative experiences with IUDs. This distrust undergirded their lack of interest in the IUD. These findings highlight the importance of locating contraceptive decision-making in the broader context of reproductive journeys.

Medical conditions, pregnancy perspectives and contraceptive decision-making among young people: an exploratory, qualitative analysis.

OBJECTIVE: To explore perspectives on family planning among young people who perceive they are infertile or will have difficulty carrying a pregnancy to term owing to medical conditions or procedures. METHODS: This exploratory analysis examined pregnancy plans and contraceptive behavior among 12 young adults with a diagnosed medical condition or who had undergone a medical procedure associated with impaired fertility, and who had discussed fertility with a healthcare provider. We utilized data from a larger study investigating prospective pregnancy intentions and plans among 50 young (ages 18-24) women and their male partners (n=100). RESULTS: Medical conditions included endometriosis, polycystic ovary syndrome, and lupus. For some, medical conditions/procedures led to use of no or less effective contraception; perceived risk for pregnancy was low, though seven participants had previously experienced pregnancies. Participants also described how medical conditions altered their timelines for pregnancy and overall desire for children; for example, one participant described continuing an unplanned pregnancy because she feared it would be her only chance to parent. CONCLUSION: This exploratory analysis suggests that among young people, medical issues perceived to affect fertility and pregnancy may influence pregnancy planning and contraceptive behavior. Young people may lack knowledge about fertility and the impact of a medical condition; thus it is critical that providers clarify the difference between anticipated difficulty conceiving and complete infertility. Tailored contraceptive care is needed for young adults with medical conditions that may affect fertility to ensure they have the necessary information to make informed family planning decisions. IMPLICATIONS: Medical conditions known to affect fertility may influence young people's family planning desires and behaviors. Understanding how young adults process information about medical conditions' impact on their fertility and change or make plans in response is important in order to best meet their family planning needs.

The Misclassification of Ambivalence in Pregnancy Intentions: A Mixed-Methods Analysis.

CONTEXT: Researchers have developed various measures of pregnancy ambivalence in an effort to capture the nuance overlooked by conventional, binary measures of pregnancy intention. However, the conceptualization and operationalization of the concept of ambivalence vary widely and may miss the complexity inherent in pregnancy intentions, particularly for young people, among whom unintended pregnancy rates are highest. METHODS: To investigate the utility and accuracy of current measures of pregnancy ambivalence, a mixed-methods study was conducted with 50 young women and their male partners in northern California in 2015-2016. Survey data were used to descriptively analyze six existing pregnancy ambivalence measures; in-depth interviews addressing pregnancy desires and plans were deductively coded and thematically analyzed to understand why some participants appeared to be ambivalent from the survey data when their interview responses suggested otherwise. RESULTS: Eighty participants would be considered ambivalent by at least one measure. After assessment of the interview data, however, these measures were deemed to have misclassified almost all (78) participants. Qualitative analysis revealed several themes regarding misclassification: conflation of current pregnancy desires with expected postconception emotional responses; acceptability of an undesired pregnancy; tempering of survey responses to account for partners' desires; perceived lack of control regarding pregnancy; and, among participants with medical conditions perceived to impact fertility, subjugation of pregnancy desires in the interest of self-protection. CONCLUSIONS: Current approaches to measuring pregnancy ambivalence may fail to capture the intricacies of pregnancy intentions and may be ineffective if they do not account for young people's experiences, especially when used to inform clinical practice, programs and policy.

Planned, unplanned and in-between: the meaning and context of pregnancy planning for young people.

OBJECTIVE: To understand how young people conceptualize planned, unplanned and "in-between" pregnancies. METHODS: We conducted individual qualitative interviews with 50 young (ages 18-24) women and their male partners (n=100) in the San Francisco Bay Area to investigate prospective pregnancy intentions. In this analysis, we focused on participants' conceptualization of planned and unplanned pregnancies, as well as a status in between planned and unplanned. RESULTS: Conceptualizations of pregnancy planning were influenced by personal experiences and life circumstances, including previous unplanned pregnancies. While many participants held up planned pregnancies as an ideal, the majority of participants (n=71) also felt that a status in between planned and unplanned pregnancy existed. Many described this in-between stage occurring when someone is "not not trying" or would find an unplanned pregnancy acceptable. Notably, a few participants mentioned that pregnancy planning was not possible because either it was uncommon among their peers or they felt a general lack of control over pregnancy. CONCLUSION: Our analysis suggests that binary operationalization of pregnancies as "planned" and "unplanned" neglects the complexity of young people's lived experiences and perspectives. Contraceptive counseling approaches that allow patients the flexibility to express their considerations and feelings toward a potential future pregnancy could improve the quality of family planning visits and patient-provider interactions. IMPLICATIONS: The traditional binary conceptualization of pregnancies as planned and unplanned may not holistically capture the diverse perspectives of young people. Increased understanding of the complexities in young people's conceptualizion of pregnancy planning can inform family planning care that is inclusive, relevant and supportive of a variety of perspectives.

It's Not Planned, But Is It Okay? The Acceptability of Unplanned Pregnancy Among Young People.

BACKGROUND: It is well-established that current measures of pregnancy intentions fail to capture the complexity of couples' lived experiences and decisions regarding reproductive decision making. Despite limitations, these measures guide programs, policy, and clinical practice. Herein, we explore prospective pregnancy acceptability, which captures whether individuals anticipate considering an unexpected pregnancy welcomed, manageable, or okay. METHODS: Individual qualitative interviews were conducted with 50 young (ages 18-24 years) women and their male partners (N = 100) to elucidate prospective pregnancy desires and perspectives on pregnancy planning. Using a thematic approach, we analyzed data from a subsample (n = 88) of participants who did not currently desire a pregnancy. RESULTS: Despite lack of pregnancy desire, 37 participants indicated that a pregnancy would be acceptable. Several themes emerged as reasons for pregnancy acceptability, including feeling prepared for children, relational stability, having knowledge of what it takes to parent, and taking a "whatever happens" approach toward pregnancy planning. Notably, a number of reasons for pregnancy acceptability were also described as reasons for lack of acceptability. For example, although many parents in the sample found pregnancy acceptable owing to their knowledge of the time and resources that raising children required, other parents found pregnancy unacceptable for this same reason. CONCLUSIONS: Acceptability captures nuances of prospective views on pregnancy and what it means for young people's lives that current intentions language and framing often neglects. Additionally, acceptability may be a construct that resonates with the perspectives and lives of young people for whom the notion of active pregnancy planning is not salient.

More Than a Destination: Contraceptive Decision Making as a Journey.

BACKGROUND: Contraceptive use is widely recognized as a means of reducing adverse health-related outcomes. However, dominant paradigms of contraceptive counseling may rely on a narrow definition of "evidence" (i.e., scientifically accurate but exclusive of individual women's experiences). Given increased enthusiasm for long-acting, reversible contraceptive methods, such paradigms may reinforce counseling that overprivileges effectiveness, particularly for groups considered at high risk of unintended pregnancy. This study investigates where and how women's experiences fit into the definition of evidence these counseling protocols use. METHODS: Using a qualitative approach, this analysis draws on semistructured interviews with 38 young (ages 18-24) Black and Latina women. We use a qualitative content analysis approach, with coding categories derived directly from the textual data. FINDINGS: Our analysis suggests that contraceptive decision making is an iterative, relational, reflective journey. Throughout contraceptive histories, participants described experiences evolving to create a foundation from which decision-making power was drawn. The same contraceptive-related decisions were revisited repeatedly, with knowledge accrued along the way. The cumulative experience of using, assigning meanings to, and developing values around contraception meant that young women experienced contraceptive decision making as a dynamic process. IMPLICATIONS FOR PRACTICE: This journey creates a rich body of evidence that informs contraceptive decision making. To provide appropriate, acceptable, patient-centered family planning care, providers must engage with evidence grounded in women's expertise on their contraceptive use in addition to medically accurate data on method effectiveness, side effects, and contraindications.

"Is That A Method of Birth Control?" A Qualitative Exploration of Young Women's Use of Withdrawal.

Despite its ubiquity, withdrawal is understudied as a family planning method. We investigated the context of and decision making around withdrawal use, drawing on in-depth, qualitative interviews with 38 Black and Latina women (ages 18 to 24). We examined contraceptive use histories to understand when and why participants used withdrawal. The majority of participants (n = 29; 76%) had used withdrawal in their lifetimes, though two-thirds of users mentioned withdrawal in their contraceptive histories only after interviewer prompts. Withdrawal was primarily used during transitions between contraceptive methods and when other methods were not desired. Relationship context was also an important factor, as many used withdrawal to increase intimacy with their partners; because they felt condoms were no longer necessary due to monogamy; or to fulfill their partners' preferences to increase sexual pleasure. Our findings indicate that decision making around withdrawal is embedded in situational and relational contexts. Future research should explore how health care providers and sex educators can engage young women in discussions of withdrawal's benefits and constraints. A harm reduction framework, which recognizes that optimal use of withdrawal is preferable to not using a pregnancy prevention method at all, may inform the ways that withdrawal can be addressed in clinical and educational settings.