Parental Decision Making Regarding Level of Newborn Screening Participation in the Homebirth Setting

Parental Decision Making Regarding Level of Newborn Screening Participation in the Homebirth Setting | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Parental Decision Making Regarding Level of Newborn Screening Participation in the Homebirth Setting Dylan Platt, Mackenzie Ikenberry, Becca Loman This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6882053/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 20 Nov, 2025 Read the published version in Journal of Community Genetics → Version 1 posted 7 You are reading this latest preprint version Abstract Newborn screening (NBS) is a public health initiative (PHI) that identifies newborns with critical health conditions or deafness, allowing for intervention or life saving treatments. Information regarding NBS education following homebirths is limited. We sought to understand homebirth parents’ NBS experiences. Interview participants were recruited from Facebook groups through a screening questionnaire. An interpretivist paradigm was employed through narrative analysis, deriving themes from the life-experiences of homebirth clients about provision/abnegation from NBS. Inductive, double, coding was employed. The coding schema was iteratively applied to eight semi-structured interviews. Five narrative domains were identified: Birth Setting, Birth Plan, NBS, Misconceptions , and Education . Decisions about birth-setting were influenced by prior healthcare experiences, parental desire to avoid hospital-associated-infections, and perceived parental autonomy. While all interviewees were aware of NBS, not all components of NBS were completed in an appropriate or timely manner. Barriers to NBS implementation were exacerbated by misconceptions about its purpose and ability, leading to a desire for more comprehensive education. Importantly, all five narrative domains are interdependent with aspects of each impacting client perceptions and actions within other domains. Misconceptions breed mistrust; fostering greater psychological safety through comprehensive consent discussions– exploring client goals and understanding –may increase trust in PHIs. Consent should focus on the purpose and abilities of NBS; thus, reducing risk perception and enhancing understanding of its benefits in both homebirth and hospital settings. Paired written and oral communication, multidisciplinary care leveraging genetic counselors, and focused continuing medical education for midwives and prenatal providers may further improve NBS. Newborn Screening Public Health Initiative Patient Education Midwifery Education Midwifery Professional Issues INTRODUCTION Newborn screening (NBS) is a public health service performed at the state level and is estimated to save or improve the lives of over 12,000 babies a year in the United States (Centers for Disease Control, 2012; Association of Public Health Laboratories). This is accomplished by screening at least 4 million newborns each year for a variety of health concerns or deafness (Martin et al., 2017 ). NBS includes three components: a heel stick to collect blood spots to screen for a number of congenital and inherited conditions, a pulse oximetry screen to assess for critical congenital heart defects, and a hearing test to screen for reduced hearing or deafness (National Institutes of Health, 2017 ). The exact conditions that are included on a state’s newborn screen vary, but are drawn from the Recommended Uniform Screening Panel (RUSP); this list is published and updated by the Health Resources and Services Administration (HRSA) with the goal of reducing disability, morbidity, and mortality (Health Resources and Services Administration, 2023 ). Early detection of and intervention for these conditions can improve health outcomes for newborns. NBS is standard of care and is state mandated. However, in many states, parents of newborns can elect to opt-out of NBS; this can occur through either direct abnegation or limited accessibility to screening options, which may present itself within the homebirth setting. Literature indicates abnegation of NBS may be more common than expected, especially among parents who plan to give birth at home. A state-wide North Dakota study found that the odds of NBS refusal were significantly higher among homebirths (p < 0.0001). While overall state-wide refusal rates were relatively low (0.33%), they occurred almost entirely in homebirths (94% of total NBS refusals) (Njau & Odoi, 2019 ). The total number of homebirths in the United States has more than doubled from 2007 to 2022 and are predicted to continue to grow (Centers for Disease Control and Prevention: Annual Natality Information). In a national survey of women who had recently given birth in a hospital setting, 29% reported that they would consider a homebirth (Declercq et al., 2013). This increase in homebirths may be tied to greater visibility on “mommy blogs”, birth podcasts, and social media platforms like Facebook, Instagram, and YouTube. Social media as a primary source of information reflects recent trends in how Americans access news and educate themselves about a variety of healthcare topics, such as vaccines and pregnancy (Madathil et al., 2015 ; Stellefson et al., 2020 ; Smailhodzic et al., 2016); however, the ultimate cause for this steep increase is unknown. As homebirth rates continue to rise, there may also be an increase in the number of newborns not receiving all or part of the NBS. Importantly, communities more inclined to pursue a homebirth (e.g. Amish, Mennonite, Hutterite) are more likely to be impacted by genetic conditions screened for on NBS due to the increased prevalence of founder mutations (Anderson & Potts, 2020 ; Finn, 1995 ; Strauss & Puffenberger, 2009 ; Triggs et al., 2016). This could result in poorer outcomes for newborns affected with unidentified congenital and genetic conditions and critical congenital heart defects, or limit options for parents interested in pursuing interventions for children with reduced hearing or deafness. The factors influencing parents’ decisions to opt-out of NBS are not abundantly clear or available in existing literature. Some of this data is collected in states that require parents to complete forms to establish NBS abnegation; however, this data has not yet been nationally compiled or published. The purpose of this qualitative pilot study is to better understand the factors that influence NBS participation during homebirths within the United States. This study sought to understand parents’ main reasons for pursuing homebirths, sources of NBS information within the homebirth setting, and gain insight into parental perceptions of NBS utility. The semi-structured interview guide was designed to elicit narratives from participants about their homebirths and NBS participation decision, including common concerns or misconceptions about the NBS process. METHODS The study design received approval from the Augustana University institutional review board (IRB) and was conducted in accordance with the Standards for Reporting Qualitative Research (SRQR) and Consolidated Criteria for Reporting Qualitative Research (COREQ). A 27-question online recruitment survey was created. The survey gathered data about the respondents’ general birth experience(s), homebirth experience(s), understanding of NBS, level of participation in NBS, factors they consider the most influential in determining their level of NBS participation, demographic information, and their interest in participating in a semi-structured phone interview in the second phase of the study. Data from this survey is not presented in this manuscript as it was anonymized to the interviewees nor were there statistical differences present regarding birth experiences and demographic data. Respondent first names and contact information were collected only for those willing to participate in the interview portion. The recruitment survey was open for a three-month period from August to October, 2021. The recruitment survey link was publicly posted on four homebirth community Facebook group pages. These Facebook group pages were selected for survey distribution if permission to post was granted from the group’s administrator or if the survey met the groups’ accepted posting guidelines. Survey respondents met criteria for the phone interview portion if they self-reported one or more homebirths in the United States and desired to participate. Respondents needed to read, speak, and understand English, but were not excluded based on age, sex, gender, race, or any other demographic criteria. A member of the research team (MW) contacted all survey participants who met interview criteria and provided contact information (n = 16). Following several training sessions and pilot interviews conducted with another team member (DP), who has extensive experience in qualitative study design and interviewing, one member of the research team (MW) interviewed all participants via telephone to ensure continuity. The semi-structured phone interviews were an average of 19.9 minutes, (7 minutes to 35 minutes) (Interview Guide is Online Resource 1). Interviews were audio-recorded and transcribed, with all identifying information removed. Participants verbally consented to being recorded prior to the beginning of the interview. Each interview participant received a $ 10 gift card to compensate them for their time. Methodological design was approached through an interpretivist paradigm and coding was completed using narrative inquiry (Riessman, 2008), directly deriving major themes from the interviewees life experiences and thoughts on the benefits and limitations to the provision or abnegation of NBS within the homebirth setting. The three authors, including both coders (MW, DP), identify as white, cis-gendered individuals with an intimate understanding of NBS (all are genetic counselors), neither coder had children at the time of the study. The coders understand that these salient identities may have impacted the analysis of interviewee narratives. Care was taken during coding meetings to challenge each other’s identities and interpretations of narratives provided by interviewees, when necessary, in order to more comprehensively interpret these life experiences. Inductive coding led to the creation of a codebook with five thematic domains; each containing several sub-themes, which shared narrative similarities. The final codebook (Online Resource 2) was used to code all interviews, which were double coded. All individuals who volunteered for and scheduled an interview were included in the data analysis- there was not a criterion for “saturation”. The five narrative domains identified are: Birth Setting, Birth Plan, Newborn Screening, Misconceptions, and Education. While there are five primary domains presented within the manuscript, it is important to note that the experiences and narratives which support each domain are tightly interwoven and interdependent, the authors have attempted to present these narrative bridges throughout the discussion where we feel it is explicitly applicable. RESULTS Thirty-five individuals completed the initial recruitment survey, with sixteen indicating an interest to participate in interviews; however, eight interviews were ultimately completed. All interviewees identified as female, with an average age falling between 25–34 years. Interviewees had mixed levels of education ranging from one participant with some college education to two participants with master’s degrees. Seven self-reported as White with one reporting Hispanic/Latina as their ethnicity. Four of the eight participants had a homebirth for their first birth and therefore had no hospital birth experience. Three participants had more than one child, with one hospital birth each. One participant had multiple births, all at home and none in a hospital or birth center setting. Domain I: Birth Setting Positive experiences were reported in both the homebirth and hospital/birth center settings; however, it is notable that none of the interviewees reported a negative experience in the home setting while four referenced a negative experience within the hospital setting “I was told they were going to give me an episiotomy… and we didn’t choose to opt into do any vaccines at birth. And we got a lot of attitude for that” (Interviewee #3). These negative experiences appeared to serve as motivating factors to pursue a homebirth in subsequent pregnancies. Homebirths were reported as feeling like a safer environment compared to the hospital setting where “I surrendered by bodily autonomy” (Interviewee #4). These motivations were also tied to a perceived sense of greater safety within the homebirth setting “I am actually getting emotional… it was a very, like, powerful and peaceful situation” (Interviewee #5); “I think things happen better at home and it can be just as safe or even safer at home than at a hospital” (Interviewee #6). Oftentimes, this sense of safety was expressed in conjunction with who would be allowed in the room or the level of trust present with the provider. Interviewee #4 referenced the fact that she viewed hospitals as increasing the number of “strangers in your midst” during an intimate experience. Having a trusted provider, such as a midwife or doula, was also reported as being more expensive in the hospital setting due to a lack of insurance coverage or institutional policies. Interestingly, the hospital setting was seen as the desired setting for more comprehensive, emergent, care while simultaneously conferring a greater risk to health in a lower risk birth/NBS completion: “I’d pretty much have to be forced to because of some urgent medical reasons” (Interviewee #4); “no one wanted to be at a hospital at that time” (Interviewee #2 stated about COVID-19). Domain 2: Birth Plan The importance of a birth plan, and negative reactions associated with deviating from the plan, were frequently relayed by interviewees. Alterations to the birth plan included using an epidural (when originally intending not to), having to switch intended locations (move from homebirth setting to hospital), or the need for an emergent intervention. The two most important components of interviewees' birth plans appeared to be the individuals involved as well as the concept of a “natural birth”. The ability to have midwives as well as numerous family members present during a birth was frequently cited as a positive for the homebirth setting and more complicated to have within the hospital setting. Regarding a “natural birth”, one interviewee stated “I just really like how there’s no intervention unless necessary. I believe in the physiological aspect of birth, and just how it's supposed to happen. It knows…our bodies know what to do. Our babies know what to do” (Interviewee #6). Domain 3: Newborn Screening Five of the interviewees reported completing all three components of the NBS, with two reporting partial completion, and one reporting not participating in any portions of the NBS within the homebirth setting. In exploring these client experiences, interviewees noted that it was difficult to participate in all three parts of the screen within their homes. Typically, at least one component required presenting to a clinic or hospital. This not only created a barrier to comprehensive NBS but also led to two interviewees completing components of the NBS outside of the recommended window (i.e. blood spot 24–48 hours, pulse oximetry shortly after birth but > 24 hours, hearing screen < 30 days). When making a decision to complete NBS, all interviewees reporting being offered the screen by their midwife throughout their prenatal experience, with all correctly identifying the optional nature of it and three reporting the ability to ask follow-up questions about the NBS. Although all were made aware of NBS by their midwives, concerns surrounding the comprehensiveness of consent were voiced by four interviewees and people expressed a significant fear for governmental overreach: “They keep a newborn screen sample unless you like submit paperwork to get them destroyed” (Interviewee #1); “I could see the state weaponizing it at some point” (Interviewee #4). However, for some, even when a fear for overreach was present, they performed a risk/benefit analysis before ultimately deciding to pursue NBS, regardless: “Even if the governments secretly keeping my kid’s DNA for 18 years, it's worth it to be able to catch something that a doctor is not going to catch” (Interviewee #5); “Both my husband and I are pretty risk-averse people. So overall, we were like, yep” (Interviewee #7). Domain 4: Misconceptions The risk/benefit analysis previously mentioned was typically interwoven with the concepts of scientific literacy, general misunderstanding about the intended audience and capabilities of NBS, and previous poor pregnancy experiences. These all impacted the perceived utility of NBS. Those who viewed NBS as useful had a more accurate understanding surrounding its intentions and they may have had higher scientific literacy “Our midwife was great that my husband and I are scientists and so she always came prepared with like, papers and research” (Interviewee #2). This was in contrast to interviewees who misinterpreted the intended audience “um, I feel like it could be helpful to some people, but I don’t think it would be helpful for me” (Interviewee #1). This feeling was always tied to the idea of the absence of a family history of genetic disease alleviating the need for screening, which is inconsistent with the expectations of a screen for primarily autosomal recessive conditions. Other interviewees harbored misconceptions for the intended use case: “the heel prick really didn’t help us much. Like it did tell us he didn’t have jaundice, but we kind of already knew that” (Interviewee #6); interviewee #3 reported a history of miscarriages leading her to “always [be] like ultra-concerned” they could impact future children’s health. Still another interviewee referenced that providers are likely getting kickbacks from state NBS and “that’s why she wants families to do them” (Interviewee #5). Domain 5: Education Education about NBS was primarily provided by the prenatal healthcare provider; almost exclusively the midwife with some referencing education from a physician in previous pregnancies. Additional resources for education included primary literature (two interviewees), friends and family (one interviewee), and social media (two interviewees). Interviewee #8 reported a friend experiencing a positive NBS “and got a call that her son was like a carrier for an allele of the Sickle Cell”. Social media not only serves as a primary educational tool, but was also reported as a sort of informational battleground “there was a big argument in a bunch of homebirth Facebook groups. And there were a few moms that are like… its completely unnecessary” (Interviewee #5). DISCUSSION The findings from this qualitative study aid in our understanding about motivations for pursuing a homebirth as well as NBS adherence and understanding present within this birth setting. Ultimately, greater comprehension of these trends and decision-making processes can aid in the critical development of public health policies as well as healthcare provider and client education around these health initiatives. A client’s past experiences within a hospital birth setting as well as their current perceptions of safety, including psychological safety, serve as important motivating factors for choosing a birth setting. Experiences that individuals feel as limiting their bodily or birth plan autonomy (e.g. episiotomy, emergent procedures, vaccinations, limitations to who can be in attendance) may lead them to pursuing a homebirth or another alternative during a future pregnancy. The authors acknowledge that pursuing alternative birth plans is not a negative consequence of these client experiences. However, we feel it is important to postulate why procedures like episiotomy or attendance restrictions are inherently seen as “negative”. We hypothesize there may be a disconnect between healthcare provider’s actions within a hospital setting and their ability, or time taken, to convey the actions intent/purpose. Allowing for additional time to educate individuals about these policies and procedures may allow for providers to strengthen their rapport and relationship with their clients, similar to the psychological safety that midwives were able to foster for these interviewees. The idea of client autonomy, and not deviating from the birth plan, was reinforced by the concept and desire for a “natural birth”. The experiences of interviewees whose birth experiences deviated from their original plans were remembered in a negative light. We expect that with each deviation, or increased severity of deviation, from the intended birth plan there may be an increased risk for psychological harm or cause the client to reflect on their birth as a “failure”. Client education about the fact that pregnancy interventions (in contrast to a “natural birth”) have reduced maternal mortality by 15-88x since the 1800’s (reduction from 5–29/1000 [Loudon, 1986 ] births to 32.9/100,000 [Hoyert, 2023 ] births) may be useful in combating this potential psychological phenomenon for individuals with moderate or high-risk pregnancies who are planning a “natural birth” and would benefit from greater opportunity for interventions. Notably, some interviewee concerns were specifically tied to COVID-19 (i.e. contracting illness or COVID-19 attendance restrictions). This will not be the only pandemic we experience as a nation and the fact that, while individuals may understand the concept of healthcare associated infections, their understanding about these illnesses is lacking and potentially inaccurate (Sahiner, 2023 ) and should be a component of prenatal education. Hospitals and insurance companies alike should also take note of interviewee concerns regarding birthplace restrictions on who can be present, or is a covered provider, during birth. Interviewees specified that the homebirth setting leads to physical and temporal difficulties with completing NBS, regardless of the parent’s intentions for completing this screening. If midwives and health institutions build partnerships to better implement flexible NBS protocols, similar to the adapted approach to pulse oximetry screening presented in Williams et al and Narayen et al, this could alleviate consequential barriers to comprehensive NBS (Williams et al. 2021 ; Narayen et al., 2016). Modified approaches to both the blood spot collection and hearing screen would need to focus on limiting travel burden for the family while optimizing the ability to accomplish these screens within their designated timeframes. While it is encouraging to hear that midwives are aware of and actively educating on NBS, it appears there are still significant midwife and client concerns about the level of information provided and if this qualifies as informed consent (Coupal et al., 2020 ). Several studies provide evidence that these inadequate or inconsistent educational practices are also present within the hospital setting (Etchgary et al., 2016) with only 14% and 34% of women recalling receiving information on the NBS or feeling adequately educated about it, respectively (Fitzgerald et al., 2017 ). These gaps in informed consent appear to result in unwarranted concerns about the intent of sample collection as well as misconceptions surrounding the purpose, audience, and capabilities of NBS. Client education provided by their healthcare professional should focus on state and federal laws (e.g. retention of samples or anti-kickback) as well as condition specific information. Targeted education, and formal informed consent, may alleviate these concerns and misconceptions. More informed clientele may lead to less of a risk/benefit analysis at an already stressful time and a more realistic set of expectations about what information NBS results may provide to families. Key components of education should include the fact that NBS primarily assesses for autosomal recessive conditions, meaning a family history of genetic diagnosis is not a requirement or expectation in order for the test to have clinical utility. Providing examples of specific conditions screened for, the fact that treatment is available and efficacious, and examples of what is not screened for are important components of client education, as well. Considering that interviewees reported seeking this information from sources other than their midwives exemplifies its importance. To maintain consistent and accurate education, midwives and other prenatal healthcare providers should continue to position themselves as the primary client educational resource. Strategies to solidify this position should include continuing medical education, quick reference guides for clients, encouraging questions during education, and utilization of outside resources (e.g. Baby’s First Test) and multidisciplinary care (e.g. referrals to genetic counselors). While midwives are frequently involved in postpartum care for mothers and perinatal care for newborns, follow-up care for neonates after the discovery of a previously unidentified genetic condition is likely to fall to providers like pediatricians, geneticists, and genetic counselors. If these providers are not familiar with midwives’ roles in pre-test counseling or education for NBS, this could hinder a collaborative team approach to care. Limitations Participant recall bias is a significant limitation to this study. Participants could only report the details that they remember and there is no way to confirm that these lived experiences and accounts are wholly accurate. Given the recruitment methods used, there may be some inherent self-selection bias among the participant cohort. Additionally, it is possible that the sample population recruited via social media is not representative of the total homebirth population. While the demographics of the cohort who participated in this study are largely representative of the demographics of those who choose to have planned homebirths in the United States; white, college educated women in their 30s, who have already given birth at least once (MacDorman & Declercq, 2019 ), this study does not provide helpful insights into those who do not belong to these demographics. Additional groups deserve their own community-guided research to better understand additional components (e.g. healthcare discrimination and institutional racism, low socioeconomic status) that impact individuals decision-making. Interviews were also conducted during the COVID-19 pandemic which may have impacted homebirth rates and client perceptions of the hospital setting or public health initiatives. With eight total interviews, this is a relatively small cohort. To bypass bias associated with a limited number of participants, insights were gathered using a qualitative, rather than quantitative, approach. Future Research Recommendations This pilot study could be strengthened by including more homebirth parents’ perspectives with a larger, and more diverse, interview cohort. This study focused only on perspectives from parents, but to have a thorough understanding, it would be necessary to also include the perspectives of midwives practicing in the homebirth setting. Ideally, future research would include a quantitative evaluation of national NBS completion rates for homebirths. Because COVID-19 was a common theme, it is recommended that future studies explore how global pandemics can impact homebirth-rates, in the United States or globally. Results from this study don’t include the experiences of a growing population of “free-birthers”, who choose to give birth at home, unassisted, without any trained birth attendant. This group is especially unlikely to be counseled about NBS prior to birth and would not likely have immediate access to a midwife or any NBS postnatally in the home. This could be an additional population in which to explore factors related to NBS participation. CONCLUSION Given its complex nature and traditionally surface level informed consent discussions, NBS is fraught with the potential for misconceptions and mistrust. Building a strong relationship that fosters psychological safety, and prioritizes relationship building, may aid in provider-client relationships and build trust in public health initiatives. Improved transparency and communication about the purpose of NBS may reduce the perception of risk and enhance understanding of the benefits. Strategies such as informed consent conversations, multidisciplinary care leveraging genetic counselors, and focused continuing medical education for midwives and other prenatal providers may also improve client understanding of NBS. Declarations Compliance with Ethics Guidelines Conflicts of interest: Dylan Platt declares that he has no conflict of interest Mackenzie Ikenberry declares that she has no conflict of interest Becca Loman declares that she has no conflict of interest This article does not contain any studies with human or animal subjects performed by any of the authors. Funding: This study did not receive any outside funding and was completed as part of a master’s thesis for the second author’s graduation requirements Author Contribution D.P. contributed to the initial development of the research question, interview guide, and completed lead coding of the interview transcripts. D.P. provided interview and coding training to the sole interviewer (M.I.), served as her primary research advisor and wrote and edited the main manuscript.M.I. contributed to the initial development of the research question, interview guide, and served as the second coder of the interview transcripts. M.I. served as the sole interviewer as well as drafted the initial manuscript as part of her masters thesis graduation requirement.B.L. contributed to the initial development of the research question, served as a primary editor for the main manuscript, and served as a research advisor to M.I. Acknowledgement This study was completed in partial fulfillment of the requirements for the second author’s Master of Science degree from Augustana University. We would like to acknowledge and thank the survey and interview participants who contributed their time, Emily Phillips who was involved in initial research development conversations, and to everyone from the Augustana Sanford Genetic Counseling Graduate Program who has helped to facilitate and support this study. References Anderson, C., & Potts, L. (2020). The Amish health culture and culturally sensitive health services: An exhaustive narrative review. Soc Sci Med , 265 , 113466. https://doi.org/10.1016/j.socscimed.2020.113466 Association of Public Health Laboratories. (2013). The Newborn Screening Story . Accessed April 24, 2022. Https://Www.Aphl.Org/aboutAPHL/Publications/Documents/NBS_2013May_The-Newb orn-Screening-Story_How-One-Simple-Test-Changed-Lives-Science-and-Health-in-Ame rica.Pdf Catherine Kohler Riessman (2008). 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J., Driscoll, A. K., & Mathews, T. J. (2017). Births: Final Data for 2015. Natl Vital Stat Rep , 66 (1), 1. National Institutes of Health. (2017). How many newborns are screened in the United States . Accessed June 24, 2024. https://www.nichd.nih.gov/health/topics/newborn/conditioninfo/infants-screened Narayen, I. C., Blom, N. A., Bourgonje, M. S., Haak, M. C., Smit, M., Posthumus, F.,…te Pas, A. B. (2016). Pulse Oximetry Screening for Critical Congenital Heart Disease after Home Birth and Early Discharge. J Pediatr , 170 , 188-192.e181. https://doi.org/10.1016/j.jpeds.2015.12.004 Njau, G., & Odoi, A. (2019). Investigation of Predictors of Newborn Screening Refusal in a Large Birth Cohort in North Dakota, USA. Matern Child Health J , 23 (1), 92-99. https://doi.org/10.1007/s10995-018-2598-7 Sahiner P. (2023). What do patients know about healthcare-associated infections? What do they want to know? Ethical evaluation. 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Development of a diagnostic DNA chip to screen for 30 autosomal recessive disorders in the Hutterite population. Mol Genet Genomic Med , 4 (3), 312-321. https://doi.org/10.1002/mgg3.206 Williams, K. B., Horst, M., Hollinger, E. A., Freedman, J., Demczko, M. M., & Chowdhury, D. (2021). Newborn Pulse Oximetry for Infants Born Out-of-Hospital. Pediatrics , 148 (4). https://doi.org/10.1542/peds.2020-04878 Additional Declarations No competing interests reported. Supplementary Files OnlineResource1InterviewGuide.docx OnlineResource2Codebook.docx Cite Share Download PDF Status: Published Journal Publication published 20 Nov, 2025 Read the published version in Journal of Community Genetics → Version 1 posted Editorial decision: Revision requested 11 Aug, 2025 Reviews received at journal 06 Aug, 2025 Reviewers agreed at journal 17 Jul, 2025 Reviewers invited by journal 18 Jun, 2025 Editor assigned by journal 17 Jun, 2025 Submission checks completed at journal 17 Jun, 2025 First submitted to journal 12 Jun, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6882053","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":473475315,"identity":"c5cc5445-ae6f-4ddb-a825-f89f31fc1d68","order_by":0,"name":"Dylan Platt","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAxklEQVRIiWNgGAWjYDCCA8wNQNIGiBlBDGZitABVHkhII13LYRiXCC18txsbP3/8cV7e4PzixgcMFdaJDYS0SN452CxxIOG24YYbD5sNGM6kE9ZicCOxAaSFccONg20SjG2HidLS/ONAwjl7oJb2H4z/iNPSBrTlQOKG841twEAjQgvQL20WZ9KSk2feYGyWSDiWbkxQC9/t5sM3KmzsbPvOH3/44UONtSxBLQwScEYCA0MCQeUoWvgPEKV+FIyCUTAKRiAAADGsTuwR6rQtAAAAAElFTkSuQmCC","orcid":"","institution":"Augustana University","correspondingAuthor":true,"prefix":"","firstName":"Dylan","middleName":"","lastName":"Platt","suffix":""},{"id":473475316,"identity":"fd878cce-0a8d-4d46-b045-ebb39dc7cb29","order_by":1,"name":"Mackenzie Ikenberry","email":"","orcid":"","institution":"Ascension Sacred Heart Hospital","correspondingAuthor":false,"prefix":"","firstName":"Mackenzie","middleName":"","lastName":"Ikenberry","suffix":""},{"id":473475317,"identity":"62e17f9f-2842-4e01-8189-765dd704f0ce","order_by":2,"name":"Becca Loman","email":"","orcid":"","institution":"Augustana University","correspondingAuthor":false,"prefix":"","firstName":"Becca","middleName":"","lastName":"Loman","suffix":""}],"badges":[],"createdAt":"2025-06-12 16:08:20","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6882053/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6882053/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1007/s12687-025-00844-w","type":"published","date":"2025-11-20T15:58:10+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":96651060,"identity":"70d8e11c-c704-4181-a7be-c9403f74cb9f","added_by":"auto","created_at":"2025-11-24 16:13:37","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":423857,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6882053/v1/b4c947f1-37cd-4443-a0d8-7bafcccf136b.pdf"},{"id":85050878,"identity":"f930b264-8487-4076-848d-4ec3146f79bd","added_by":"auto","created_at":"2025-06-20 11:33:06","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":10657,"visible":true,"origin":"","legend":"","description":"","filename":"OnlineResource1InterviewGuide.docx","url":"https://assets-eu.researchsquare.com/files/rs-6882053/v1/ad8c1fb01277d9b0d5138981.docx"},{"id":85050880,"identity":"2a5237ce-7f55-406c-9119-98111b5b72cb","added_by":"auto","created_at":"2025-06-20 11:33:06","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":10696,"visible":true,"origin":"","legend":"","description":"","filename":"OnlineResource2Codebook.docx","url":"https://assets-eu.researchsquare.com/files/rs-6882053/v1/89b81eee3293459490bd379d.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Parental Decision Making Regarding Level of Newborn Screening Participation in the Homebirth Setting","fulltext":[{"header":"INTRODUCTION","content":"\u003cp\u003eNewborn screening (NBS) is a public health service performed at the state level and is estimated to save or improve the lives of over 12,000 babies a year in the United States (Centers for Disease Control, 2012; Association of Public Health Laboratories). This is accomplished by screening at least 4\u0026nbsp;million newborns each year for a variety of health concerns or deafness (Martin et al., \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e2017\u003c/span\u003e). NBS includes three components: a heel stick to collect blood spots to screen for a number of congenital and inherited conditions, a pulse oximetry screen to assess for critical congenital heart defects, and a hearing test to screen for reduced hearing or deafness (National Institutes of Health, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e2017\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe exact conditions that are included on a state\u0026rsquo;s newborn screen vary, but are drawn from the Recommended Uniform Screening Panel (RUSP); this list is published and updated by the Health Resources and Services Administration (HRSA) with the goal of reducing disability, morbidity, and mortality (Health Resources and Services Administration, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). Early detection of and intervention for these conditions can improve health outcomes for newborns.\u003c/p\u003e \u003cp\u003eNBS is standard of care and is state mandated. However, in many states, parents of newborns can elect to opt-out of NBS; this can occur through either direct abnegation or limited accessibility to screening options, which may present itself within the homebirth setting. Literature indicates abnegation of NBS may be more common than expected, especially among parents who plan to give birth at home. A state-wide North Dakota study found that the odds of NBS refusal were significantly higher among homebirths (p\u0026thinsp;\u0026lt;\u0026thinsp;0.0001). While overall state-wide refusal rates were relatively low (0.33%), they occurred almost entirely in homebirths (94% of total NBS refusals) (Njau \u0026amp; Odoi, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e2019\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe total number of homebirths in the United States has more than doubled from 2007 to 2022 and are predicted to continue to grow (Centers for Disease Control and Prevention: Annual Natality Information). In a national survey of women who had recently given birth in a hospital setting, 29% reported that they would consider a homebirth (Declercq et al., 2013). This increase in homebirths may be tied to greater visibility on \u0026ldquo;mommy blogs\u0026rdquo;, birth podcasts, and social media platforms like Facebook, Instagram, and YouTube. Social media as a primary source of information reflects recent trends in how Americans access news and educate themselves about a variety of healthcare topics, such as vaccines and pregnancy (Madathil et al., \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e2015\u003c/span\u003e; Stellefson et al., \u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Smailhodzic et al., 2016); however, the ultimate cause for this steep increase is unknown.\u003c/p\u003e \u003cp\u003eAs homebirth rates continue to rise, there may also be an increase in the number of newborns not receiving all or part of the NBS. Importantly, communities more inclined to pursue a homebirth (e.g. Amish, Mennonite, Hutterite) are more likely to be impacted by genetic conditions screened for on NBS due to the increased prevalence of founder mutations (Anderson \u0026amp; Potts, \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Finn, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e1995\u003c/span\u003e; Strauss \u0026amp; Puffenberger, \u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e2009\u003c/span\u003e; Triggs et al., 2016). This could result in poorer outcomes for newborns affected with unidentified congenital and genetic conditions and critical congenital heart defects, or limit options for parents interested in pursuing interventions for children with reduced hearing or deafness. The factors influencing parents\u0026rsquo; decisions to opt-out of NBS are not abundantly clear or available in existing literature. Some of this data is collected in states that require parents to complete forms to establish NBS abnegation; however, this data has not yet been nationally compiled or published.\u003c/p\u003e \u003cp\u003eThe purpose of this qualitative pilot study is to better understand the factors that influence NBS participation during homebirths within the United States. This study sought to understand parents\u0026rsquo; main reasons for pursuing homebirths, sources of NBS information within the homebirth setting, and gain insight into parental perceptions of NBS utility. The semi-structured interview guide was designed to elicit narratives from participants about their homebirths and NBS participation decision, including common concerns or misconceptions about the NBS process.\u003c/p\u003e"},{"header":"METHODS","content":"\u003cp\u003e The study design received approval from the Augustana University institutional review board (IRB) and was conducted in accordance with the Standards for Reporting Qualitative Research (SRQR) and Consolidated Criteria for Reporting Qualitative Research (COREQ). A 27-question online recruitment survey was created. The survey gathered data about the respondents\u0026rsquo; general birth experience(s), homebirth experience(s), understanding of NBS, level of participation in NBS, factors they consider the most influential in determining their level of NBS participation, demographic information, and their interest in participating in a semi-structured phone interview in the second phase of the study. Data from this survey is not presented in this manuscript as it was anonymized to the interviewees nor were there statistical differences present regarding birth experiences and demographic data. Respondent first names and contact information were collected only for those willing to participate in the interview portion. The recruitment survey was open for a three-month period from August to October, 2021.\u003c/p\u003e \u003cp\u003eThe recruitment survey link was publicly posted on four homebirth community Facebook group pages. These Facebook group pages were selected for survey distribution if permission to post was granted from the group\u0026rsquo;s administrator or if the survey met the groups\u0026rsquo; accepted posting guidelines.\u003c/p\u003e \u003cp\u003e Survey respondents met criteria for the phone interview portion if they self-reported one or more homebirths in the United States and desired to participate. Respondents needed to read, speak, and understand English, but were not excluded based on age, sex, gender, race, or any other demographic criteria. A member of the research team (MW) contacted all survey participants who met interview criteria and provided contact information (n\u0026thinsp;=\u0026thinsp;16). Following several training sessions and pilot interviews conducted with another team member (DP), who has extensive experience in qualitative study design and interviewing, one member of the research team (MW) interviewed all participants via telephone to ensure continuity. The semi-structured phone interviews were an average of 19.9 minutes, (7 minutes to 35 minutes) (Interview Guide is Online Resource 1).\u003c/p\u003e \u003cp\u003e Interviews were audio-recorded and transcribed, with all identifying information removed. Participants verbally consented to being recorded prior to the beginning of the interview. Each interview participant received a \u003cspan\u003e$\u003c/span\u003e10 gift card to compensate them for their time. \u003c/p\u003e \u003cp\u003eMethodological design was approached through an interpretivist paradigm and coding was completed using narrative inquiry (Riessman, 2008), directly deriving major themes from the interviewees life experiences and thoughts on the benefits and limitations to the provision or abnegation of NBS within the homebirth setting. The three authors, including both coders (MW, DP), identify as white, cis-gendered individuals with an intimate understanding of NBS (all are genetic counselors), neither coder had children at the time of the study. The coders understand that these salient identities may have impacted the analysis of interviewee narratives. Care was taken during coding meetings to challenge each other\u0026rsquo;s identities and interpretations of narratives provided by interviewees, when necessary, in order to more comprehensively interpret these life experiences. Inductive coding led to the creation of a codebook with five thematic domains; each containing several sub-themes, which shared narrative similarities. The final codebook (Online Resource 2) was used to code all interviews, which were double coded. All individuals who volunteered for and scheduled an interview were included in the data analysis- there was not a criterion for \u0026ldquo;saturation\u0026rdquo;. The five narrative domains identified are: Birth Setting, Birth Plan, Newborn Screening, Misconceptions, and Education. While there are five primary domains presented within the manuscript, it is important to note that the experiences and narratives which support each domain are tightly interwoven and interdependent, the authors have attempted to present these narrative bridges throughout the discussion where we feel it is explicitly applicable.\u003c/p\u003e"},{"header":"RESULTS","content":"\u003cp\u003eThirty-five individuals completed the initial recruitment survey, with sixteen indicating an interest to participate in interviews; however, eight interviews were ultimately completed. All interviewees identified as female, with an average age falling between 25\u0026ndash;34 years. Interviewees had mixed levels of education ranging from one participant with some college education to two participants with master\u0026rsquo;s degrees. Seven self-reported as White with one reporting Hispanic/Latina as their ethnicity. Four of the eight participants had a homebirth for their first birth and therefore had no hospital birth experience. Three participants had more than one child, with one hospital birth each. One participant had multiple births, all at home and none in a hospital or birth center setting.\u003c/p\u003e\n\u003ch3\u003eDomain I: Birth Setting\u003c/h3\u003e\n\u003cp\u003ePositive experiences were reported in both the homebirth and hospital/birth center settings; however, it is notable that none of the interviewees reported a negative experience in the home setting while four referenced a negative experience within the hospital setting \u0026ldquo;I was told they were going to give me an episiotomy\u0026hellip; and we didn\u0026rsquo;t choose to opt into do any vaccines at birth. And we got a lot of attitude for that\u0026rdquo; (Interviewee #3). These negative experiences appeared to serve as motivating factors to pursue a homebirth in subsequent pregnancies. Homebirths were reported as feeling like a safer environment compared to the hospital setting where \u0026ldquo;I surrendered by bodily autonomy\u0026rdquo; (Interviewee #4).\u003c/p\u003e \u003cp\u003eThese motivations were also tied to a perceived sense of greater safety within the homebirth setting \u0026ldquo;I am actually getting emotional\u0026hellip; it was a very, like, powerful and peaceful situation\u0026rdquo; (Interviewee #5); \u0026ldquo;I think things happen better at home and it can be just as safe or even safer at home than at a hospital\u0026rdquo; (Interviewee #6). Oftentimes, this sense of safety was expressed in conjunction with who would be allowed in the room or the level of trust present with the provider. Interviewee #4 referenced the fact that she viewed hospitals as increasing the number of \u0026ldquo;strangers in your midst\u0026rdquo; during an intimate experience. Having a trusted provider, such as a midwife or doula, was also reported as being more expensive in the hospital setting due to a lack of insurance coverage or institutional policies.\u003c/p\u003e \u003cp\u003eInterestingly, the hospital setting was seen as the desired setting for more comprehensive, emergent, care while simultaneously conferring a greater risk to health in a lower risk birth/NBS completion: \u0026ldquo;I\u0026rsquo;d pretty much have to be forced to because of some urgent medical reasons\u0026rdquo; (Interviewee #4); \u0026ldquo;no one wanted to be at a hospital at that time\u0026rdquo; (Interviewee #2 stated about COVID-19).\u003c/p\u003e\n\u003ch3\u003eDomain 2: Birth Plan\u003c/h3\u003e\n\u003cp\u003eThe importance of a birth plan, and negative reactions associated with deviating from the plan, were frequently relayed by interviewees. Alterations to the birth plan included using an epidural (when originally intending not to), having to switch intended locations (move from homebirth setting to hospital), or the need for an emergent intervention. The two most important components of interviewees' birth plans appeared to be the individuals involved as well as the concept of a \u0026ldquo;natural birth\u0026rdquo;. The ability to have midwives as well as numerous family members present during a birth was frequently cited as a positive for the homebirth setting and more complicated to have within the hospital setting. Regarding a \u0026ldquo;natural birth\u0026rdquo;, one interviewee stated \u0026ldquo;I just really like how there\u0026rsquo;s no intervention unless necessary. I believe in the physiological aspect of birth, and just how it's supposed to happen. It knows\u0026hellip;our bodies know what to do. Our babies know what to do\u0026rdquo; (Interviewee #6).\u003c/p\u003e\n\u003ch3\u003eDomain 3: Newborn Screening\u003c/h3\u003e\n\u003cp\u003eFive of the interviewees reported completing all three components of the NBS, with two reporting partial completion, and one reporting not participating in any portions of the NBS within the homebirth setting. In exploring these client experiences, interviewees noted that it was difficult to participate in all three parts of the screen within their homes. Typically, at least one component required presenting to a clinic or hospital. This not only created a barrier to comprehensive NBS but also led to two interviewees completing components of the NBS outside of the recommended window (i.e. blood spot 24\u0026ndash;48 hours, pulse oximetry shortly after birth but \u0026gt;\u0026thinsp;24 hours, hearing screen\u0026thinsp;\u0026lt;\u0026thinsp;30 days). When making a decision to complete NBS, all interviewees reporting being offered the screen by their midwife throughout their prenatal experience, with all correctly identifying the optional nature of it and three reporting the ability to ask follow-up questions about the NBS. Although all were made aware of NBS by their midwives, concerns surrounding the comprehensiveness of consent were voiced by four interviewees and people expressed a significant fear for governmental overreach: \u0026ldquo;They keep a newborn screen sample unless you like submit paperwork to get them destroyed\u0026rdquo; (Interviewee #1); \u0026ldquo;I could see the state weaponizing it at some point\u0026rdquo; (Interviewee #4). However, for some, even when a fear for overreach was present, they performed a risk/benefit analysis before ultimately deciding to pursue NBS, regardless: \u0026ldquo;Even if the governments secretly keeping my kid\u0026rsquo;s DNA for 18 years, it's worth it to be able to catch something that a doctor is not going to catch\u0026rdquo; (Interviewee #5); \u0026ldquo;Both my husband and I are pretty risk-averse people. So overall, we were like, yep\u0026rdquo; (Interviewee #7).\u003c/p\u003e\n\u003ch3\u003eDomain 4: Misconceptions\u003c/h3\u003e\n\u003cp\u003eThe risk/benefit analysis previously mentioned was typically interwoven with the concepts of scientific literacy, general misunderstanding about the intended audience and capabilities of NBS, and previous poor pregnancy experiences. These all impacted the perceived utility of NBS. Those who viewed NBS as useful had a more accurate understanding surrounding its intentions and they may have had higher scientific literacy \u0026ldquo;Our midwife was great that my husband and I are scientists and so she always came prepared with like, papers and research\u0026rdquo; (Interviewee #2). This was in contrast to interviewees who misinterpreted the intended audience \u0026ldquo;um, I feel like it could be helpful to some people, but I don\u0026rsquo;t think it would be helpful for me\u0026rdquo; (Interviewee #1). This feeling was always tied to the idea of the absence of a family history of genetic disease alleviating the need for screening, which is inconsistent with the expectations of a screen for primarily autosomal recessive conditions. Other interviewees harbored misconceptions for the intended use case: \u0026ldquo;the heel prick really didn\u0026rsquo;t help us much. Like it did tell us he didn\u0026rsquo;t have jaundice, but we kind of already knew that\u0026rdquo; (Interviewee #6); interviewee #3 reported a history of miscarriages leading her to \u0026ldquo;always [be] like ultra-concerned\u0026rdquo; they could impact future children\u0026rsquo;s health. Still another interviewee referenced that providers are likely getting kickbacks from state NBS and \u0026ldquo;that\u0026rsquo;s why she wants families to do them\u0026rdquo; (Interviewee #5).\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eDomain 5: Education\u003c/h2\u003e \u003cp\u003eEducation about NBS was primarily provided by the prenatal healthcare provider; almost exclusively the midwife with some referencing education from a physician in previous pregnancies. Additional resources for education included primary literature (two interviewees), friends and family (one interviewee), and social media (two interviewees). Interviewee #8 reported a friend experiencing a positive NBS \u0026ldquo;and got a call that her son was like a carrier for an allele of the Sickle Cell\u0026rdquo;. Social media not only serves as a primary educational tool, but was also reported as a sort of informational battleground \u0026ldquo;there was a big argument in a bunch of homebirth Facebook groups. And there were a few moms that are like\u0026hellip; its completely unnecessary\u0026rdquo; (Interviewee #5).\u003c/p\u003e \u003c/div\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThe findings from this qualitative study aid in our understanding about motivations for pursuing a homebirth as well as NBS adherence and understanding present within this birth setting. Ultimately, greater comprehension of these trends and decision-making processes can aid in the critical development of public health policies as well as healthcare provider and client education around these health initiatives.\u003c/p\u003e \u003cp\u003eA client\u0026rsquo;s past experiences within a hospital birth setting as well as their current perceptions of safety, including psychological safety, serve as important motivating factors for choosing a birth setting. Experiences that individuals feel as limiting their bodily or birth plan autonomy (e.g. episiotomy, emergent procedures, vaccinations, limitations to who can be in attendance) may lead them to pursuing a homebirth or another alternative during a future pregnancy. The authors acknowledge that pursuing alternative birth plans is not a negative consequence of these client experiences. However, we feel it is important to postulate why procedures like episiotomy or attendance restrictions are inherently seen as \u0026ldquo;negative\u0026rdquo;. We hypothesize there may be a disconnect between healthcare provider\u0026rsquo;s actions within a hospital setting and their ability, or time taken, to convey the actions intent/purpose. Allowing for additional time to educate individuals about these policies and procedures may allow for providers to strengthen their rapport and relationship with their clients, similar to the psychological safety that midwives were able to foster for these interviewees.\u003c/p\u003e \u003cp\u003eThe idea of client autonomy, and not deviating from the birth plan, was reinforced by the concept and desire for a \u0026ldquo;natural birth\u0026rdquo;. The experiences of interviewees whose birth experiences deviated from their original plans were remembered in a negative light. We expect that with each deviation, or increased severity of deviation, from the intended birth plan there may be an increased risk for psychological harm or cause the client to reflect on their birth as a \u0026ldquo;failure\u0026rdquo;. Client education about the fact that pregnancy interventions (in contrast to a \u0026ldquo;natural birth\u0026rdquo;) have reduced maternal mortality by 15-88x since the 1800\u0026rsquo;s (reduction from 5\u0026ndash;29/1000 [Loudon, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e1986\u003c/span\u003e] births to 32.9/100,000 [Hoyert, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e2023\u003c/span\u003e] births) may be useful in combating this potential psychological phenomenon for individuals with moderate or high-risk pregnancies who are planning a \u0026ldquo;natural birth\u0026rdquo; and would benefit from greater opportunity for interventions.\u003c/p\u003e \u003cp\u003eNotably, some interviewee concerns were specifically tied to COVID-19 (i.e. contracting illness or COVID-19 attendance restrictions). This will not be the only pandemic we experience as a nation and the fact that, while individuals may understand the concept of healthcare associated infections, their understanding about these illnesses is lacking and potentially inaccurate (Sahiner, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e2023\u003c/span\u003e) and should be a component of prenatal education. Hospitals and insurance companies alike should also take note of interviewee concerns regarding birthplace restrictions on who can be present, or is a covered provider, during birth.\u003c/p\u003e \u003cp\u003eInterviewees specified that the homebirth setting leads to physical and temporal difficulties with completing NBS, regardless of the parent\u0026rsquo;s intentions for completing this screening. If midwives and health institutions build partnerships to better implement flexible NBS protocols, similar to the adapted approach to pulse oximetry screening presented in Williams et al and Narayen et al, this could alleviate consequential barriers to comprehensive NBS (Williams et al. \u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Narayen et al., 2016). Modified approaches to both the blood spot collection and hearing screen would need to focus on limiting travel burden for the family while optimizing the ability to accomplish these screens within their designated timeframes.\u003c/p\u003e \u003cp\u003eWhile it is encouraging to hear that midwives are aware of and actively educating on NBS, it appears there are still significant midwife and client concerns about the level of information provided and if this qualifies as informed consent (Coupal et al., \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). Several studies provide evidence that these inadequate or inconsistent educational practices are also present within the hospital setting (Etchgary et al., 2016) with only 14% and 34% of women recalling receiving information on the NBS or feeling adequately educated about it, respectively (Fitzgerald et al., \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e2017\u003c/span\u003e). These gaps in informed consent appear to result in unwarranted concerns about the intent of sample collection as well as misconceptions surrounding the purpose, audience, and capabilities of NBS. Client education provided by their healthcare professional should focus on state and federal laws (e.g. retention of samples or anti-kickback) as well as condition specific information. Targeted education, and formal informed consent, may alleviate these concerns and misconceptions. More informed clientele may lead to less of a risk/benefit analysis at an already stressful time and a more realistic set of expectations about what information NBS results may provide to families. Key components of education should include the fact that NBS primarily assesses for autosomal recessive conditions, meaning a family history of genetic diagnosis is not a requirement or expectation in order for the test to have clinical utility. Providing examples of specific conditions screened for, the fact that treatment is available and efficacious, and examples of what is not screened for are important components of client education, as well.\u003c/p\u003e \u003cp\u003eConsidering that interviewees reported seeking this information from sources other than their midwives exemplifies its importance. To maintain consistent and accurate education, midwives and other prenatal healthcare providers should continue to position themselves as the primary client educational resource. Strategies to solidify this position should include continuing medical education, quick reference guides for clients, encouraging questions during education, and utilization of outside resources (e.g. Baby\u0026rsquo;s First Test) and multidisciplinary care (e.g. referrals to genetic counselors). While midwives are frequently involved in postpartum care for mothers and perinatal care for newborns, follow-up care for neonates after the discovery of a previously unidentified genetic condition is likely to fall to providers like pediatricians, geneticists, and genetic counselors. If these providers are not familiar with midwives\u0026rsquo; roles in pre-test counseling or education for NBS, this could hinder a collaborative team approach to care.\u003c/p\u003e\n\u003ch3\u003eLimitations\u003c/h3\u003e\n\u003cp\u003eParticipant recall bias is a significant limitation to this study. Participants could only report the details that they remember and there is no way to confirm that these lived experiences and accounts are wholly accurate. Given the recruitment methods used, there may be some inherent self-selection bias among the participant cohort. Additionally, it is possible that the sample population recruited via social media is not representative of the total homebirth population. While the demographics of the cohort who participated in this study are largely representative of the demographics of those who choose to have planned homebirths in the United States; white, college educated women in their 30s, who have already given birth at least once (MacDorman \u0026amp; Declercq, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e2019\u003c/span\u003e), this study does not provide helpful insights into those who do not belong to these demographics. Additional groups deserve their own community-guided research to better understand additional components (e.g. healthcare discrimination and institutional racism, low socioeconomic status) that impact individuals decision-making. Interviews were also conducted during the COVID-19 pandemic which may have impacted homebirth rates and client perceptions of the hospital setting or public health initiatives. With eight total interviews, this is a relatively small cohort. To bypass bias associated with a limited number of participants, insights were gathered using a qualitative, rather than quantitative, approach.\u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eFuture Research Recommendations\u003c/h2\u003e \u003cp\u003eThis pilot study could be strengthened by including more homebirth parents\u0026rsquo; perspectives with a larger, and more diverse, interview cohort. This study focused only on perspectives from parents, but to have a thorough understanding, it would be necessary to also include the perspectives of midwives practicing in the homebirth setting. Ideally, future research would include a quantitative evaluation of national NBS completion rates for homebirths. Because COVID-19 was a common theme, it is recommended that future studies explore how global pandemics can impact homebirth-rates, in the United States or globally.\u003c/p\u003e \u003cp\u003eResults from this study don\u0026rsquo;t include the experiences of a growing population of \u0026ldquo;free-birthers\u0026rdquo;, who choose to give birth at home, unassisted, without any trained birth attendant. This group is especially unlikely to be counseled about NBS prior to birth and would not likely have immediate access to a midwife or any NBS postnatally in the home. This could be an additional population in which to explore factors related to NBS participation.\u003c/p\u003e \u003c/div\u003e"},{"header":"CONCLUSION","content":"\u003cp\u003eGiven its complex nature and traditionally surface level informed consent discussions, NBS is fraught with the potential for misconceptions and mistrust. Building a strong relationship that fosters psychological safety, and prioritizes relationship building, may aid in provider-client relationships and build trust in public health initiatives. Improved transparency and communication about the purpose of NBS may reduce the perception of risk and enhance understanding of the benefits. Strategies such as informed consent conversations, multidisciplinary care leveraging genetic counselors, and focused continuing medical education for midwives and other prenatal providers may also improve client understanding of NBS.\u003c/p\u003e "},{"header":"Declarations","content":" \u003cp\u003e\u003cstrong\u003eCompliance with Ethics Guidelines\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eConflicts of interest:\u003c/p\u003e\n\u003cp\u003eDylan Platt declares that he has no conflict of interest\u003c/p\u003e\n\u003cp\u003eMackenzie Ikenberry declares that she has no conflict of interest\u003c/p\u003e\n\u003cp\u003eBecca Loman declares that she has no conflict of interest\u003c/p\u003e\n\u003cp\u003eThis article does not contain any studies with human or animal subjects performed by any of the authors.\u003c/p\u003e\n\u003cp\u003eFunding: This study did not receive any outside funding and was completed as part of a master\u0026rsquo;s thesis for the second author\u0026rsquo;s graduation requirements\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eD.P. contributed to the initial development of the research question, interview guide, and completed lead coding of the interview transcripts. D.P. provided interview and coding training to the sole interviewer (M.I.), served as her primary research advisor and wrote and edited the main manuscript.M.I. contributed to the initial development of the research question, interview guide, and served as the second coder of the interview transcripts. M.I. served as the sole interviewer as well as drafted the initial manuscript as part of her masters thesis graduation requirement.B.L. contributed to the initial development of the research question, served as a primary editor for the main manuscript, and served as a research advisor to M.I.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eThis study was completed in partial fulfillment of the requirements for the second author\u0026rsquo;s Master of Science degree from Augustana University. We would like to acknowledge and thank the survey and interview participants who contributed their time, Emily Phillips who was involved in initial research development conversations, and to everyone from the Augustana Sanford Genetic Counseling Graduate Program who has helped to facilitate and support this study.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eAnderson, C., \u0026amp; Potts, L. (2020). The Amish health culture and culturally sensitive health services: An exhaustive narrative review. \u003cem\u003eSoc Sci Med\u003c/em\u003e,\u003cem\u003e\u0026nbsp;265\u003c/em\u003e, 113466. \u003cu\u003ehttps://doi.org/10.1016/j.socscimed.2020.113466\u003c/u\u003e\u003c/li\u003e\n \u003cli\u003eAssociation of Public Health Laboratories. (2013). \u003cem\u003eThe Newborn Screening Story\u003c/em\u003e. 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BMC Health Serv Res. 2016 Aug 26;16(1):442. doi: 10.1186/s12913-016-1691-0\u003c/li\u003e\n \u003cli\u003eStellefson, M., Paige, S. R., Chaney, B. H., \u0026amp; Chaney, J. D. (2020). Evolving Role of Social Media in Health Promotion: Updated Responsibilities for Health Education Specialists. \u003cem\u003eInt J Environ Res Public\u0026nbsp;\u003c/em\u003e\u003cem\u003eHealth\u003c/em\u003e,\u003cem\u003e\u0026nbsp;17\u003c/em\u003e(4). \u003cu\u003ehttps://doi.org/10.3390/ijerph17041153\u003c/u\u003e\u003c/li\u003e\n \u003cli\u003eStrauss, K. A., \u0026amp; Puffenberger, E. G. (2009). Genetics, medicine, and the Plain people. \u003cem\u003eAnnu Rev\u0026nbsp;\u003c/em\u003e\u003cem\u003eGenomics Hum Genet\u003c/em\u003e,\u003cem\u003e\u0026nbsp;10\u003c/em\u003e, 513-536. \u003cu\u003ehttps://doi.org/10.1146/annurev-genom-082908-150040\u003c/u\u003e\u003c/li\u003e\n \u003cli\u003eTriggs-Raine, B., Dyck, T., Boycott, K. M., Innes, A. M., Ober, C., Parboosingh, J. S.,\u0026hellip;Spriggs, E. L. (2016). Development of a diagnostic DNA chip to screen for 30 autosomal recessive disorders in the Hutterite population. \u003cem\u003eMol Genet Genomic Med\u003c/em\u003e,\u003cem\u003e\u0026nbsp;4\u003c/em\u003e(3), 312-321. \u003cu\u003ehttps://doi.org/10.1002/mgg3.206\u003c/u\u003e\u003c/li\u003e\n \u003cli\u003eWilliams, K. B., Horst, M., Hollinger, E. A., Freedman, J., Demczko, M. M., \u0026amp; Chowdhury, D. (2021). Newborn Pulse Oximetry for Infants Born Out-of-Hospital. \u003cem\u003ePediatrics\u003c/em\u003e,\u003cem\u003e\u0026nbsp;148\u003c/em\u003e(4). \u003cu\u003ehttps://doi.org/10.1542/peds.2020-04878\u003c/u\u003e\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"journal-of-community-genetics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jocg","sideBox":"Learn more about [Journal of Community Genetics](http://link.springer.com/journal/12685)","snPcode":"12687","submissionUrl":"https://submission.nature.com/new-submission/12687/3","title":"Journal of Community Genetics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Newborn Screening, Public Health Initiative, Patient Education, Midwifery Education, Midwifery Professional Issues","lastPublishedDoi":"10.21203/rs.3.rs-6882053/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6882053/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eNewborn screening (NBS) is a public health initiative (PHI) that identifies newborns with critical health conditions or deafness, allowing for intervention or life saving treatments. Information regarding NBS education following homebirths is limited. We sought to understand homebirth parents\u0026rsquo; NBS experiences. Interview participants were recruited from Facebook groups through a screening questionnaire. An interpretivist paradigm was employed through narrative analysis, deriving themes from the life-experiences of homebirth clients about provision/abnegation from NBS. Inductive, double, coding was employed. The coding schema was iteratively applied to eight semi-structured interviews. Five narrative domains were identified: \u003cem\u003eBirth Setting, Birth Plan, NBS, Misconceptions\u003c/em\u003e, and \u003cem\u003eEducation\u003c/em\u003e. Decisions about birth-setting were influenced by prior healthcare experiences, parental desire to avoid hospital-associated-infections, and perceived parental autonomy. While all interviewees were aware of NBS, not all components of NBS were completed in an appropriate or timely manner. Barriers to NBS implementation were exacerbated by misconceptions about its purpose and ability, leading to a desire for more comprehensive education. Importantly, all five narrative domains are interdependent with aspects of each impacting client perceptions and actions within other domains. Misconceptions breed mistrust; fostering greater psychological safety through comprehensive consent discussions\u0026ndash; exploring client goals and understanding \u0026ndash;may increase trust in PHIs. Consent should focus on the purpose and abilities of NBS; thus, reducing risk perception and enhancing understanding of its benefits in both homebirth and hospital settings. Paired written and oral communication, multidisciplinary care leveraging genetic counselors, and focused continuing medical education for midwives and prenatal providers may further improve NBS.\u003c/p\u003e","manuscriptTitle":"Parental Decision Making Regarding Level of Newborn Screening Participation in the Homebirth Setting","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-20 11:33:02","doi":"10.21203/rs.3.rs-6882053/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-08-11T09:12:22+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-08-06T16:52:36+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"102349908915719280502634195829593452589","date":"2025-07-17T08:36:39+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-06-18T14:08:54+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-06-17T07:25:55+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-06-17T07:23:29+00:00","index":"","fulltext":""},{"type":"submitted","content":"Journal of Community Genetics","date":"2025-06-12T16:02:21+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"journal-of-community-genetics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jocg","sideBox":"Learn more about [Journal of Community Genetics](http://link.springer.com/journal/12685)","snPcode":"12687","submissionUrl":"https://submission.nature.com/new-submission/12687/3","title":"Journal of Community Genetics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"5f6a2bda-b251-46b9-acca-b0e2d2b6d1d6","owner":[],"postedDate":"June 20th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-11-24T16:11:04+00:00","versionOfRecord":{"articleIdentity":"rs-6882053","link":"https://doi.org/10.1007/s12687-025-00844-w","journal":{"identity":"journal-of-community-genetics","isVorOnly":false,"title":"Journal of Community Genetics"},"publishedOn":"2025-11-20 15:58:10","publishedOnDateReadable":"November 20th, 2025"},"versionCreatedAt":"2025-06-20 11:33:02","video":"","vorDoi":"10.1007/s12687-025-00844-w","vorDoiUrl":"https://doi.org/10.1007/s12687-025-00844-w","workflowStages":[]},"version":"v1","identity":"rs-6882053","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6882053","identity":"rs-6882053","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}