- Email: [email protected]
Beyond same-day long-acting reversible contraceptive access: a person-centered framework for advancing high-quality, equitable contraceptive care
Journal Pre-proof Beyond same-day LARC access: A person-centered framework for advancing high quality, equitable contraceptive care Kelsey Holt, ScD, Ms. Reiley Reed, MPH, Joia Crear Perry, MD, Ms. Cherisse Scott, Ms. Sarah Wulf, MPH, Christine Dehlendorf, MD PII:
S0002-9378(19)32700-0
DOI:
https://doi.org/10.1016/j.ajog.2019.11.1279
Reference:
YMOB 12992
To appear in:
American Journal of Obstetrics and Gynecology
Received Date: 17 August 2019 Revised Date:
17 October 2019
Accepted Date: 5 November 2019
Please cite this article as: Holt K, Reed R, Perry JC, Scott C, Wulf S, Dehlendorf C, Beyond same-day LARC access: A person-centered framework for advancing high quality, equitable contraceptive care, American Journal of Obstetrics and Gynecology (2020), doi: https://doi.org/10.1016/j.ajog.2019.11.1279. This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier Inc.
Beyond same-day LARC access: A person-centered framework for advancing high quality, equitable contraceptive care
Kelsey HOLT, ScDa, Ms. Reiley REED, MPHa, Joia CREAR PERRY, MDb, Ms. Cherisse SCOTTc, Ms. Sarah WULF, MPH a, Christine DEHLENDORF, MDa,d,e a
Department of Family & Community Medicine, University of California, San Francisco
b
National Birth Equity Collaborative
c
SisterReach
d
Department of Obstetrics, Gynecology & Reproductive Sciences, University of California, San
Francisco e
Department of Epidemiology & Biostatistics, University of California, San Francisco
The authors report no conflict of interest
Financial support: This project was support by funds from the David and Lucile Packard Foundation. The Packard Foundation played no role in the development of the framework presented in this Call to Action.
Corresponding author: Dr. Kelsey Holt; [email protected]; 415-206-4234; 1001 Potrero Avenue, San Francisco, CA 94110 Word count, abstract: 203 Word count, main text: 2,318
1
Condensation (25 words): The Person-Centered Contraceptive Care Framework is a blueprint for future contraceptive access initiatives to ground their efforts in person-centeredness, health equity, and structural/social context.
Short title: A person-centered framework for high quality, equitable contraceptive care
2
Abstract In the last decade-plus, there has been growing enthusiasm for long-acting reversible contraceptive (LARC) methods as the solution to unintended pregnancy in the United States. Contraceptive access efforts have primarily focused on addressing provider and policy barriers to LARC and have promoted LARC as first-line methods through marketing and tieredeffectiveness counseling. A “next generation” of contraceptive access efforts has the opportunity to move beyond this siloed focus on LARC towards a focus on equity and person-centeredness. Here we define a new framework for increasing equitable access to high quality, person-centered contraceptive care that includes programmatic elements necessary to provide information and services to address the barriers to accessing quality care, organized into a four-part continuum. The continuum is contextualized within structural, systematic, and social factors that influence experience of contraceptive care. We aim to provide a practical framework for researchers, program implementers, and policy makers to develop and evaluate efforts to improve equitable access to and quality of contraception care. Initiatives can intentionally be cognizant of broader structural and social factors that will influence their success and the likelihood of negative unintended consequences for marginalized groups, and thus deliberately work to design programs that meet all people’s contraceptive needs and support reproductive autonomy.
Keywords (alphabetized) Contraceptive access Contraceptive counseling Health equity Long-acting, reversible contraception Patient-centered care
3
Reproductive autonomy Shared decision making
4
The problem (one-sentence): Efforts to expand contraceptive access in the United States over the last decade have predominantly focused on long-acting reversible contraceptive methods, with relative neglect of other aspects of contraceptive access and resulting failure to ensure reproductive autonomy. The solution (one-sentence): We define a framework that policymakers, program implementers, and researchers can use as a blueprint for considering a broader range of factors influencing equitable access to high quality, person-centered contraceptive care and identifying potential solutions.
Since 2000, when the first hormonal intra-uterine device (IUD) was approved in the United States (US), there has been growing enthusiasm for long-acting reversible contraceptive (LARC) methods (IUDs and implants). Because LARCs are highly effective at preventing pregnancy, increasing their use has become a primary focus of efforts to achieve public health goals related to reducing unintended pregnancy. Efforts to expand contraceptive access have prioritized LARCs, and have primarily focused on addressing cost, provider, and policy barriers to their provision. While this work has been, at least in part, motivated by the fact that these barriers have historically made LARCs disproportionately difficult to access [1-6], efforts have often gone beyond addressing barriers to promoting LARCs as “first-line” contraception through marketing campaigns and a tiered-effectiveness counseling model that emphasizes effectiveness as the most important method attribute.[7-10] Many have raised concerns over unintended consequences of such a heavy emphasis on LARC promotion for people’s autonomy and trust in the healthcare system. This is particularly a
5
concern among communities of color, youth, poor people, undocumented immigrants, and incarcerated individuals for whom the experience of being directed—or coerced—into using particular methods is nothing new, but rather part of an ongoing legacy of reproductive oppression.[11-13] Even when providers do not intend to be directive, an emphasis on LARCs in programmatic work or counseling can be experienced as pressure.[14, 15] Further, promoting LARCs as the ideal method (in counseling or marketing)—and assuming that barriers to access are the only reason people don’t use them—runs the risk of steering people away from methods that might be most effective for them, and perpetuating understandable distrust in family planning providers and programs. Over the last several years, there has been increasing recognition that, in order to support patient autonomy, efforts to expand contraceptive access must focus on making all methods accessible. There is also a need to recognize that meeting individuals’ contraceptive needs cannot be limited to ensuring financial and same-day access to contraception. To meaningfully support reproductive autonomy with contraceptive services, it is imperative to also address the range of factors that influence whether individuals have the information and support needed to understand their bodies and seek care, whether they receive respectful care, and whether they are able to effectively use contraception when desired. 1. A person-centered framework for high quality, equitable contraceptive care This growing recognition of the need to move beyond a siloed focus on LARC and financial barriers provides an opportunity for a “next generation” of contraceptive access efforts to do more. Such work can build on past programmatic and policy successes related to LARC provision and expand to addressing a broader range of barriers people face in and out of the healthcare system. To help guide this “next generation,” we have defined a framework grounded 6
in principles of person-centeredness and health equity, as well as a recognition of the influence of structural and social contexts. Patient-centeredness, as defined by the Institute of Medicine, refers to “providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions”.[16] Grounding contraceptive access initiatives in the principle of person-centeredness1 inherently leads to prioritization of individuals’ well-being and positive experiences with care, rather than a more narrow focus on preventing unintended pregnancy at the potential expense of people’s autonomy.[17] Health equity refers to the goal that “everyone should have a fair opportunity to attain their full health potential and that no one should be disadvantaged from achieving this potential”.[18] An equity frame—including a focus on actively countering White supremacy and racism—is critical given our long societal legacy of favoring the reproduction of affluent, able-bodied Whites over other groups—a phenomenon termed “stratified reproduction.”[19-20] Our country has a long history of systematically attempting to control women of color’s, particularly Black women’s, reproductive lives and limit or demonize their childbearing [21-22]. It is imperative that contraceptive access efforts recognize and actively work to avoid perpetuating the harmful impacts this ongoing legacy of reproductive oppression can have on the autonomy and wellbeing of communities of color and other marginalized communities. In defining this new framework (Figure 1), we also draw on social ecological theory, which describes how social, environmental, and policy contexts interplay to influence health,[23] to 1
We use the term “person-centered” rather than “patient-centered” in recognition of the factors outside of the healthcare system that influence whether individuals’ contraceptive needs are met. We recognize that there is also movement towards use of a frame of “person-led” healthcare and welcome further elaboration of this frame to deepen accountability of the healthcare system for prioritizing patient experience and autonomy. 7
depict multiple levels of influence on contraceptive care delivery and people’s engagement and experiences with the healthcare system. Below we describe each part of the framework in detail. [FIGURE 1] Contextual factors The historical, social, political, economic context in the US fundamentally influences healthcare delivery. Multiple oppressions, including racism, sexism, and economic injustice, intersect to create the reproductive oppression of people of color, poor people, LGBTQ people, and others. Further, cultural and religious biases against contraception, and the stigma associated with sexuality and sexual and reproductive healthcare, are ever-present, and can interact with these oppressions. Without explicit attention to the ways in which certain groups are at a disadvantage in engaging with care, programs may inadvertently worsen disparities in sexual and reproductive health and autonomy. In the policy and health systems context, the policies of public and private payers, including those related to the Affordable Care Act, Medicaid, and Title X, [24-27] are well recognized as influencing contraceptive access, as are current clinical and public health priorities, such as a focus on reducing unintended pregnancy and abortions [17]. However, it is also essential to pay attention to less recognized factors in the health system context that can impede women’s ability to have their contraceptive choices respected or their needs met, including the power imbalance between providers and patients stemming from a fundamentally paternalistic medical system [28] and the lack of contraceptive methods with attributes that match individuals’ preferences. (Studies have shown that existing highly effective contraceptive methods are particularly ill suited to meet the preferences of many people of color [29-30]).
8
Contraceptive access initiatives should also recognize how they are embedded in community and social contexts—including family, peer, and partner relationships and norms—and work to build approaches that optimize access and quality within these networks. Particularly for adolescents, family norms related to the acceptability of communication about sexual and reproductive health and the permissibility of contraceptive use, shape individual healthcare seeking behavior. Notably, different forms of violence can also interfere with people’s ability to seek contraceptive care and follow-up support. Continuum of care Comprehensively meeting individuals’ contraceptive needs requires thinking across the continuum of care—before, during, and after individuals interact with the healthcare system—in an integrated manner. The continuum of care depicted in the framework is comprised of four components: outreach & trust-building, access, quality, and follow-up support. “Outreach & trust-building” in the framework represents efforts to reach people outside of the healthcare system with information and build trust. Importantly, this component is conceptualized as being distinct and more comprehensive than standard approaches to marketing services or LARCs to communities. Outreach and trust building mechanisms should be designed to meet people’s educational needs, provide social support to enable individuals to seek desired contraceptive care, convey people’s right to high quality services, and cultivate dialogue and healing between communities and healthcare systems. Establishing robust referral networks among diverse multi-sector organizations is also critical to ensure individuals are informed about high-quality services.
9
“Access” refers to efforts needed to address financial and other logistical barriers to accessing contraceptive care, such as transportation and childcare. Ensuring clinics are stocked with the full range of contraceptive methods—and that they are all free or affordable for patients —is critical. Proactively addressing sustainability is particularly important to ensure people are not incentivized to choose LARCs due to fear of losing access to contraception. Providing flexible options for care delivery modalities through innovative solutions such as telemedicine, pharmacy and over-the-counter access, and online ordering of contraceptive supplies are critical to expanding access to people living in rural communities, people living with disabilities, and others who face barriers to visiting clinics. Ensuring easy scheduling through online portals, call centers, same-day access, and extended office hours are also strategies to improve access. “Quality” refers to the processes of contraceptive care and the degree to which services equitably respect and meet individuals’ needs. Training related to evidence-based contraceptive provision and providing same-day access to the full range of methods are aspects of quality that have received much attention.[10, 31] However, given the historical context and ongoing research showing that women of color receive lower quality family planning care [32] and are more likely to be pressured to use contraception and have LARC methods recommended than White women (specifically among low-income groups),[33-34] it is also critical that a focus on quality includes attention to equity and racism. Trainings for all clinical staff on these issues—intentionally led by experts from the women-of-color-led reproductive justice movement—can provide a necessary foundation for a sustained commitment to providing care that does not perpetuate injustices and actively seeks to repair historical and ongoing oppressions. Training in structural competency, a framework for assessing how healthcare systems can recognize and address social structures that influence patients’ health behaviors and healthcare seeking, is also an area for
10
more work to facilitate the provision of high quality services that repair harms and engender trust.[35] With respect to contraceptive counseling, it is essential that training include how to elicit and respond to patients’ needs and values, as opposed to providers’ priorities. While the tiered effectiveness model has dominated past initiatives, recent recognition of the importance of patient-centeredness in contraceptive care has led to a growing emphasis on shared decision making as an alternative approach. This model of counseling—which is consistent with patient preferences [36] and associated with improved satisfaction with patient experiences [37]–is designed to elicit patients’ contraceptive priorities and support them in finding a method that is the best fit for these preferences. Counseling training should also emphasize the importance of providing information about non-contraceptive benefits of different methods—including their ability to prevent sexually transmitted infections and their benefits for conditions such as fibroids or dysmenorrhea—so that individuals can consider the full range of features relevant to their overall well-being. In cases where contraceptive care is provided at sites that do not provide other clinical services, and particularly other reproductive health services such as abortion, prenatal care, and infertility services, attention should be paid to having robust referral networks and processes for facilitating care coordination. Finally, leveraging and enhancing quality improvement efforts is necessary to sustain high quality, person-centered services. Focusing on patient experience, through tools such as patient surveys and engagement with patient stakeholder groups, and systematically incorporating findings into quality improvement efforts, can ensure that patient-centeredness is continuously foregrounded.
11
The final component of the care continuum, “follow-up,” refers to ongoing support for contraceptive use, switching, or discontinuation. Patient concerns about side effects are often perceived by clinicians as nuisances to effective contraceptive use, as opposed to legitimate concerns, which can manifest in a “tough it out” approach to counseling and reluctance to remove LARCs.[38-39] Clinical systems should instead develop person-centered support services and robust systems for ongoing communication with patients. Follow-up modalities should be integrated with easy scheduling of follow-up appointments and method switching, including LARC removal, on request. Support for side effect management can include availability of clinical advice through flexible means (e.g. patient portals, drop-in clinics, texting) and online materials to support people’s ability to assess and understand their own needs. Clinical systems must also have systematic approaches to ensuring patient confidentiality, including staff training on respecting patient preferences for communication. Finally, recognizing that no contraceptive prevents all pregnancies, offering person-centered pregnancy options counseling is an essential aspect of high quality contraceptive care.[40] As depicted along the bottom of the framework, “authentic community engagement” to design programs, and provide feedback as programs evolve, is critical to ensure efforts are responsive to the unique needs of the communities they aim to serve. 2. Call to action: think broadly about how to ensure high quality contraceptive care for all The goal of this framework is to provide a blueprint for policymakers, program implementers, and researchers working on the “next generation” of contraceptive access initiatives to ground their efforts in person-centeredness and health equity and consider structural and social contexts that shape people’s experiences.
12
This framework, like other models grounded in social ecological theory, illustrates the complexity of a social environment and the multiple levels of influence on health outcomes. We recognize that initiatives will almost always be constrained by availability of resources in their ability to include the full range of programmatic elements, and limited in their ability to tackle underlying oppressions. An additional constraint in the ability to operationalize this framework is that, for certain components, such as ensuring same-day access through revising facility billing, well-tested approaches exist [41-42], whereas in others, such as referrals and training in race equity and structural competency, there is a need to develop evidence-based best practices. These limitations should not interfere with future contraceptive access initiatives engaging with the broad range of factors and components described in the Person-Centered Contraceptive Care Framework. Initiatives can intentionally consider how programmatic efforts align with framework components and strive to incorporate additional components across the care continuum where possible. They can proactively be cognizant of broader structural and social factors that will influence their success and the likelihood of negative unintended consequences for certain groups. In this way, future efforts to expand contraceptive access can deliberately work to design programs that meet all people’s contraceptive needs, with the ultimate goal of supporting individuals’ reproductive autonomy and advancing health equity.
13
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Welti, K.M., J., Unintended Pregnancy in Delaware: Estimating change after the first two years of intervention to increase contraceptive access. . 2018, Child Trends.
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Colorado Department of Public Health and Environment, Taking the Unintended Out of Pregnancy: Colorado’s Success with Long-Acting Reversible Contraception. 2017.
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Sundstrom, B., D. Billings, and K.E. Zenger, Keep Calm and LARC On: A theory-based longacting reversible contraception (LARC) access campaign. Journal of Communication in Healthcare, 2016. 9: p. 160223230855002.
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Sundstrom, B., et al., Evaluating the Whoops Proof S.C. campaign: A pair-matched group pretest-posttest quasi-experimental study. Matern Child Health J, 2019. 23(8): p. 1036-1047.
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Madden, T., et al., Structured contraceptive counseling provided by the Contraceptive CHOICE Project. Contraception, 2013. 88(2): p. 243-9.
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Committee Opinion No. 642: Increasing Access to Contraceptive Implants and Intrauterine Devices to Reduce Unintended Pregnancy. Obstet Gynecol, 2015. 126(4): p. e44-8.
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Gomez, A.M., L. Fuentes, and A. Allina, Women or LARC first? Reproductive autonomy and the promotion of long-acting reversible contraceptive methods. Perspect Sex Reprod Health, 2014. 46(3): p. 171-5.
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Gubrium, A.C., et al., Realizing reproductive health equity needs more than long-acting reversible contraception (LARC). Am J Public Health, 2016. 106(1): p. 18-9.
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Mann, E.S., et al., Patients' experiences with South Carolina's immediate postpartum long-acting reversible contraception Medicaid policy. Contraception, 2019. 100(2): p. 165-171.
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Gomez, A.M. and M. Wapman, Under (implicit) pressure: young Black and Latina women's perceptions of contraceptive care. Contraception, 2017. 96(4): p. 221-226.
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Institute of Medicine Committee on Quality of Health Care in America. Crossing the quality chasm: A new health system for the 21st century. 2001, Washington (DC): National Academies Press (US) Copyright 2001 by the National Academy of Sciences. All rights reserved.
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Potter, J.E., et al., Challenging unintended pregnancy as an indicator of reproductive autonomy. Contraception, 2019. 100(1): p. 1-4.
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World Health Organization, Health Equity. 2019 [cited 2019 August 15]; Available from: https://www.who.int/topics/health_equity/en/.
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Colen, S., Like a mother to them’: Stratified reproduction and West Indian childcare workers and employers in New York, in Conceiving the new world order: The global politics of reproduction, F.R. Ginsburg, R., Editor. 1995. p. p. 78-102.
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Harris, L.H., and Wolfe, T, Stratified reproduction, family planning care and the double edge of history. Current Opinion in Obstetrics and Gynecology, 2014. 26(6): 539-44.
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Roberts, D.E., Killing the black body: Race, reproduction, and the meaning of liberty. Vintage Books; 1999.
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Ross, L. and Solinger, R., Reproductive justice: An introduction (Vol. 1). Univ of California Press; 2017.
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Stokols, D., Translating social ecological theory into guidelines for community health promotion. Am J Health Promot, 1996. 10(4): p. 282-98. 15
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Snyder, A.H., et al., The impact of the Affordable Care Act on contraceptive use and costs among privately insured women. Womens Health Issues, 2018. 28(3): p. 219-223.
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Carlin, C.S., A.R. Fertig, and B.E. Dowd, Affordable Care Act's mandate eliminating contraceptive cost sharing influenced choices of women with employer coverage. Health Aff (Millwood), 2016. 35(9): p. 1608-15.
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KFF. Medicaid's role for women. 2019 [cited 2019 August 15]; Available from: https://www.kff.org/womens-health-policy/fact-sheet/medicaids-role-for-women/.
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Moniz, M.H., et al., Association of access to family planning services with Medicaid expansion among female enrollees in Michigan. JAMA Netw Open, 2018. 1(4): p. e181627.
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Foucault, Michel. The birth of the clinic. Routledge, 2002.
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Jackson, A.V., et al., Racial and ethnic differences in women's preferences for features of contraceptive methods. Contraception, 2016. 93(5): p. 406-11.
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Lessard, L.N., et al., Contraceptive features preferred by women at high risk of unintended pregnancy. Perspect Sex Reprod Health, 2012. 44(3): p. 194-200.
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Castleberry, N. M., et al., Implementing best practices for the provision of long-acting reversible contraception: a survey of obstetrician-gynecologists. Contraception, 2019.
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Becker, D., et al., Women's perspectives on family planning service quality: an exploration of differences by race, ethnicity and language. Perspect Sex Reprod Health, 2009. 41(3): p. 158-65.
33.
Becker, D. and A.O. Tsui, Reproductive health service preferences and perceptions of quality among low-income women: racial, ethnic and language group differences. Perspect Sex Reprod Health, 2008. 40(4): p. 202-11.
34.
Dehlendorf, C., et al., Recommendations for intrauterine contraception: a randomized trial of the effects of patients' race/ethnicity and socioeconomic status. Am J Obstet Gynecol, 2010. 203(4): p. 319.e1-8.
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Metzl, J.M. and H. Hansen, Structural competency: theorizing a new medical engagement with stigma and inequality. Soc Sci Med, 2014. 103: p. 126-133. 16
36.
Dehlendorf, C., et al., Women's preferences for contraceptive counseling and decision making. Contraception, 2013. 88(2): p. 250-6.
37.
Dehlendorf, C., et al., Shared decision making in contraceptive counseling. Contraception, 2017. 95(5): p. 452-455.
38.
Amico, J.R., et al., "She just told me to leave it": Women's experiences discussing early elective IUD removal. Contraception, 2016. 94(4): p. 357-61.
39.
Grimes, D.A. and K.F. Schulz, Nonspecific side effects of oral contraceptives: nocebo or noise? Contraception, 2011. 83(1): p. 5-9.
40.
Gavin, L., et al., Providing quality family planning services: Recommendations of CDC and the U.S. Office of Population Affairs. MMWR Recomm Rep, 2014. 63(Rr-04): p. 1-54.
41.
Heberlein, E; Billings, D; Mattison-Faye, A.; Giese, M Deborah L., The South Carolina Postpartum LARC Toolkit. Choose Well Initiative and the South Carolina Birth Outcomes Initiative. 2017.
42.
Family Planning National Training Center, Same-Visit Contraception: a toolkit for family planning providers. 2019.
17
Figure legend:
Figure 1. Person-Centered Contraceptive Care Framework
18
Racism
Sexuality, gender & other discrimination
Sexism
Healthcare financing & infrastructure
Government regulations
Contraceptive coverage
Family & peer relationships
Cultural & religious biases
Economic injustice Clinical & public health priorities
Power imbalance in healthcare
Domestic & intimate partner violence
COMMUNITY & FAMILY CONTEXT
POLICY & HEALTH SYSTEMS CONTEXT
HISTORICAL, SOCIAL, POLITICAL & ECONOMIC CONTEXT
Person-Centered Contraceptive Care Framework Stigma Availability of acceptable contraceptive methods Reproductive coercion
Continuum of Care
Outreach & Trust Building
Access
Quality
Follow-up Support
• Sexual and reproductive health information and education
• Free/affordable services for all
• Patient-centered, non-coercive counseling
• No cost, barrier-free LARC removal
• Flexible options for care delivery modalities
• Evidence-based contraceptive provision
• Facilitated method switching
• Implicit bias and structural competency training
• Support for side effect management
• Same-day access to all methods, including emergency contraception
• Patient-centered pregnancy options counseling and referrals
• Integration with other services, including referrals as needed
• Protection of confidentiality in all followup communication
• Quality improvement systems that include measures of patient experience
• Different formats of information delivery (app, call, text)
• Facilitation of dialogue between community and healthcare institutions • Awareness raising around available services and right to high quality care • Referral network and care coordination
• Easy scheduling and extended hours • Support for navigating barriers to services (e.g., via transportation and childcare)
Community engagement in all efforts
S0002-9378(19)32700-0
DOI:
https://doi.org/10.1016/j.ajog.2019.11.1279
Reference:
YMOB 12992
To appear in:
American Journal of Obstetrics and Gynecology
Received Date: 17 August 2019 Revised Date:
17 October 2019
Accepted Date: 5 November 2019
Please cite this article as: Holt K, Reed R, Perry JC, Scott C, Wulf S, Dehlendorf C, Beyond same-day LARC access: A person-centered framework for advancing high quality, equitable contraceptive care, American Journal of Obstetrics and Gynecology (2020), doi: https://doi.org/10.1016/j.ajog.2019.11.1279. This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier Inc.
Beyond same-day LARC access: A person-centered framework for advancing high quality, equitable contraceptive care
Kelsey HOLT, ScDa, Ms. Reiley REED, MPHa, Joia CREAR PERRY, MDb, Ms. Cherisse SCOTTc, Ms. Sarah WULF, MPH a, Christine DEHLENDORF, MDa,d,e a
Department of Family & Community Medicine, University of California, San Francisco
b
National Birth Equity Collaborative
c
SisterReach
d
Department of Obstetrics, Gynecology & Reproductive Sciences, University of California, San
Francisco e
Department of Epidemiology & Biostatistics, University of California, San Francisco
The authors report no conflict of interest
Financial support: This project was support by funds from the David and Lucile Packard Foundation. The Packard Foundation played no role in the development of the framework presented in this Call to Action.
Corresponding author: Dr. Kelsey Holt; [email protected]; 415-206-4234; 1001 Potrero Avenue, San Francisco, CA 94110 Word count, abstract: 203 Word count, main text: 2,318
1
Condensation (25 words): The Person-Centered Contraceptive Care Framework is a blueprint for future contraceptive access initiatives to ground their efforts in person-centeredness, health equity, and structural/social context.
Short title: A person-centered framework for high quality, equitable contraceptive care
2
Abstract In the last decade-plus, there has been growing enthusiasm for long-acting reversible contraceptive (LARC) methods as the solution to unintended pregnancy in the United States. Contraceptive access efforts have primarily focused on addressing provider and policy barriers to LARC and have promoted LARC as first-line methods through marketing and tieredeffectiveness counseling. A “next generation” of contraceptive access efforts has the opportunity to move beyond this siloed focus on LARC towards a focus on equity and person-centeredness. Here we define a new framework for increasing equitable access to high quality, person-centered contraceptive care that includes programmatic elements necessary to provide information and services to address the barriers to accessing quality care, organized into a four-part continuum. The continuum is contextualized within structural, systematic, and social factors that influence experience of contraceptive care. We aim to provide a practical framework for researchers, program implementers, and policy makers to develop and evaluate efforts to improve equitable access to and quality of contraception care. Initiatives can intentionally be cognizant of broader structural and social factors that will influence their success and the likelihood of negative unintended consequences for marginalized groups, and thus deliberately work to design programs that meet all people’s contraceptive needs and support reproductive autonomy.
Keywords (alphabetized) Contraceptive access Contraceptive counseling Health equity Long-acting, reversible contraception Patient-centered care
3
Reproductive autonomy Shared decision making
4
The problem (one-sentence): Efforts to expand contraceptive access in the United States over the last decade have predominantly focused on long-acting reversible contraceptive methods, with relative neglect of other aspects of contraceptive access and resulting failure to ensure reproductive autonomy. The solution (one-sentence): We define a framework that policymakers, program implementers, and researchers can use as a blueprint for considering a broader range of factors influencing equitable access to high quality, person-centered contraceptive care and identifying potential solutions.
Since 2000, when the first hormonal intra-uterine device (IUD) was approved in the United States (US), there has been growing enthusiasm for long-acting reversible contraceptive (LARC) methods (IUDs and implants). Because LARCs are highly effective at preventing pregnancy, increasing their use has become a primary focus of efforts to achieve public health goals related to reducing unintended pregnancy. Efforts to expand contraceptive access have prioritized LARCs, and have primarily focused on addressing cost, provider, and policy barriers to their provision. While this work has been, at least in part, motivated by the fact that these barriers have historically made LARCs disproportionately difficult to access [1-6], efforts have often gone beyond addressing barriers to promoting LARCs as “first-line” contraception through marketing campaigns and a tiered-effectiveness counseling model that emphasizes effectiveness as the most important method attribute.[7-10] Many have raised concerns over unintended consequences of such a heavy emphasis on LARC promotion for people’s autonomy and trust in the healthcare system. This is particularly a
5
concern among communities of color, youth, poor people, undocumented immigrants, and incarcerated individuals for whom the experience of being directed—or coerced—into using particular methods is nothing new, but rather part of an ongoing legacy of reproductive oppression.[11-13] Even when providers do not intend to be directive, an emphasis on LARCs in programmatic work or counseling can be experienced as pressure.[14, 15] Further, promoting LARCs as the ideal method (in counseling or marketing)—and assuming that barriers to access are the only reason people don’t use them—runs the risk of steering people away from methods that might be most effective for them, and perpetuating understandable distrust in family planning providers and programs. Over the last several years, there has been increasing recognition that, in order to support patient autonomy, efforts to expand contraceptive access must focus on making all methods accessible. There is also a need to recognize that meeting individuals’ contraceptive needs cannot be limited to ensuring financial and same-day access to contraception. To meaningfully support reproductive autonomy with contraceptive services, it is imperative to also address the range of factors that influence whether individuals have the information and support needed to understand their bodies and seek care, whether they receive respectful care, and whether they are able to effectively use contraception when desired. 1. A person-centered framework for high quality, equitable contraceptive care This growing recognition of the need to move beyond a siloed focus on LARC and financial barriers provides an opportunity for a “next generation” of contraceptive access efforts to do more. Such work can build on past programmatic and policy successes related to LARC provision and expand to addressing a broader range of barriers people face in and out of the healthcare system. To help guide this “next generation,” we have defined a framework grounded 6
in principles of person-centeredness and health equity, as well as a recognition of the influence of structural and social contexts. Patient-centeredness, as defined by the Institute of Medicine, refers to “providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions”.[16] Grounding contraceptive access initiatives in the principle of person-centeredness1 inherently leads to prioritization of individuals’ well-being and positive experiences with care, rather than a more narrow focus on preventing unintended pregnancy at the potential expense of people’s autonomy.[17] Health equity refers to the goal that “everyone should have a fair opportunity to attain their full health potential and that no one should be disadvantaged from achieving this potential”.[18] An equity frame—including a focus on actively countering White supremacy and racism—is critical given our long societal legacy of favoring the reproduction of affluent, able-bodied Whites over other groups—a phenomenon termed “stratified reproduction.”[19-20] Our country has a long history of systematically attempting to control women of color’s, particularly Black women’s, reproductive lives and limit or demonize their childbearing [21-22]. It is imperative that contraceptive access efforts recognize and actively work to avoid perpetuating the harmful impacts this ongoing legacy of reproductive oppression can have on the autonomy and wellbeing of communities of color and other marginalized communities. In defining this new framework (Figure 1), we also draw on social ecological theory, which describes how social, environmental, and policy contexts interplay to influence health,[23] to 1
We use the term “person-centered” rather than “patient-centered” in recognition of the factors outside of the healthcare system that influence whether individuals’ contraceptive needs are met. We recognize that there is also movement towards use of a frame of “person-led” healthcare and welcome further elaboration of this frame to deepen accountability of the healthcare system for prioritizing patient experience and autonomy. 7
depict multiple levels of influence on contraceptive care delivery and people’s engagement and experiences with the healthcare system. Below we describe each part of the framework in detail. [FIGURE 1] Contextual factors The historical, social, political, economic context in the US fundamentally influences healthcare delivery. Multiple oppressions, including racism, sexism, and economic injustice, intersect to create the reproductive oppression of people of color, poor people, LGBTQ people, and others. Further, cultural and religious biases against contraception, and the stigma associated with sexuality and sexual and reproductive healthcare, are ever-present, and can interact with these oppressions. Without explicit attention to the ways in which certain groups are at a disadvantage in engaging with care, programs may inadvertently worsen disparities in sexual and reproductive health and autonomy. In the policy and health systems context, the policies of public and private payers, including those related to the Affordable Care Act, Medicaid, and Title X, [24-27] are well recognized as influencing contraceptive access, as are current clinical and public health priorities, such as a focus on reducing unintended pregnancy and abortions [17]. However, it is also essential to pay attention to less recognized factors in the health system context that can impede women’s ability to have their contraceptive choices respected or their needs met, including the power imbalance between providers and patients stemming from a fundamentally paternalistic medical system [28] and the lack of contraceptive methods with attributes that match individuals’ preferences. (Studies have shown that existing highly effective contraceptive methods are particularly ill suited to meet the preferences of many people of color [29-30]).
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Contraceptive access initiatives should also recognize how they are embedded in community and social contexts—including family, peer, and partner relationships and norms—and work to build approaches that optimize access and quality within these networks. Particularly for adolescents, family norms related to the acceptability of communication about sexual and reproductive health and the permissibility of contraceptive use, shape individual healthcare seeking behavior. Notably, different forms of violence can also interfere with people’s ability to seek contraceptive care and follow-up support. Continuum of care Comprehensively meeting individuals’ contraceptive needs requires thinking across the continuum of care—before, during, and after individuals interact with the healthcare system—in an integrated manner. The continuum of care depicted in the framework is comprised of four components: outreach & trust-building, access, quality, and follow-up support. “Outreach & trust-building” in the framework represents efforts to reach people outside of the healthcare system with information and build trust. Importantly, this component is conceptualized as being distinct and more comprehensive than standard approaches to marketing services or LARCs to communities. Outreach and trust building mechanisms should be designed to meet people’s educational needs, provide social support to enable individuals to seek desired contraceptive care, convey people’s right to high quality services, and cultivate dialogue and healing between communities and healthcare systems. Establishing robust referral networks among diverse multi-sector organizations is also critical to ensure individuals are informed about high-quality services.
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“Access” refers to efforts needed to address financial and other logistical barriers to accessing contraceptive care, such as transportation and childcare. Ensuring clinics are stocked with the full range of contraceptive methods—and that they are all free or affordable for patients —is critical. Proactively addressing sustainability is particularly important to ensure people are not incentivized to choose LARCs due to fear of losing access to contraception. Providing flexible options for care delivery modalities through innovative solutions such as telemedicine, pharmacy and over-the-counter access, and online ordering of contraceptive supplies are critical to expanding access to people living in rural communities, people living with disabilities, and others who face barriers to visiting clinics. Ensuring easy scheduling through online portals, call centers, same-day access, and extended office hours are also strategies to improve access. “Quality” refers to the processes of contraceptive care and the degree to which services equitably respect and meet individuals’ needs. Training related to evidence-based contraceptive provision and providing same-day access to the full range of methods are aspects of quality that have received much attention.[10, 31] However, given the historical context and ongoing research showing that women of color receive lower quality family planning care [32] and are more likely to be pressured to use contraception and have LARC methods recommended than White women (specifically among low-income groups),[33-34] it is also critical that a focus on quality includes attention to equity and racism. Trainings for all clinical staff on these issues—intentionally led by experts from the women-of-color-led reproductive justice movement—can provide a necessary foundation for a sustained commitment to providing care that does not perpetuate injustices and actively seeks to repair historical and ongoing oppressions. Training in structural competency, a framework for assessing how healthcare systems can recognize and address social structures that influence patients’ health behaviors and healthcare seeking, is also an area for
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more work to facilitate the provision of high quality services that repair harms and engender trust.[35] With respect to contraceptive counseling, it is essential that training include how to elicit and respond to patients’ needs and values, as opposed to providers’ priorities. While the tiered effectiveness model has dominated past initiatives, recent recognition of the importance of patient-centeredness in contraceptive care has led to a growing emphasis on shared decision making as an alternative approach. This model of counseling—which is consistent with patient preferences [36] and associated with improved satisfaction with patient experiences [37]–is designed to elicit patients’ contraceptive priorities and support them in finding a method that is the best fit for these preferences. Counseling training should also emphasize the importance of providing information about non-contraceptive benefits of different methods—including their ability to prevent sexually transmitted infections and their benefits for conditions such as fibroids or dysmenorrhea—so that individuals can consider the full range of features relevant to their overall well-being. In cases where contraceptive care is provided at sites that do not provide other clinical services, and particularly other reproductive health services such as abortion, prenatal care, and infertility services, attention should be paid to having robust referral networks and processes for facilitating care coordination. Finally, leveraging and enhancing quality improvement efforts is necessary to sustain high quality, person-centered services. Focusing on patient experience, through tools such as patient surveys and engagement with patient stakeholder groups, and systematically incorporating findings into quality improvement efforts, can ensure that patient-centeredness is continuously foregrounded.
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The final component of the care continuum, “follow-up,” refers to ongoing support for contraceptive use, switching, or discontinuation. Patient concerns about side effects are often perceived by clinicians as nuisances to effective contraceptive use, as opposed to legitimate concerns, which can manifest in a “tough it out” approach to counseling and reluctance to remove LARCs.[38-39] Clinical systems should instead develop person-centered support services and robust systems for ongoing communication with patients. Follow-up modalities should be integrated with easy scheduling of follow-up appointments and method switching, including LARC removal, on request. Support for side effect management can include availability of clinical advice through flexible means (e.g. patient portals, drop-in clinics, texting) and online materials to support people’s ability to assess and understand their own needs. Clinical systems must also have systematic approaches to ensuring patient confidentiality, including staff training on respecting patient preferences for communication. Finally, recognizing that no contraceptive prevents all pregnancies, offering person-centered pregnancy options counseling is an essential aspect of high quality contraceptive care.[40] As depicted along the bottom of the framework, “authentic community engagement” to design programs, and provide feedback as programs evolve, is critical to ensure efforts are responsive to the unique needs of the communities they aim to serve. 2. Call to action: think broadly about how to ensure high quality contraceptive care for all The goal of this framework is to provide a blueprint for policymakers, program implementers, and researchers working on the “next generation” of contraceptive access initiatives to ground their efforts in person-centeredness and health equity and consider structural and social contexts that shape people’s experiences.
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This framework, like other models grounded in social ecological theory, illustrates the complexity of a social environment and the multiple levels of influence on health outcomes. We recognize that initiatives will almost always be constrained by availability of resources in their ability to include the full range of programmatic elements, and limited in their ability to tackle underlying oppressions. An additional constraint in the ability to operationalize this framework is that, for certain components, such as ensuring same-day access through revising facility billing, well-tested approaches exist [41-42], whereas in others, such as referrals and training in race equity and structural competency, there is a need to develop evidence-based best practices. These limitations should not interfere with future contraceptive access initiatives engaging with the broad range of factors and components described in the Person-Centered Contraceptive Care Framework. Initiatives can intentionally consider how programmatic efforts align with framework components and strive to incorporate additional components across the care continuum where possible. They can proactively be cognizant of broader structural and social factors that will influence their success and the likelihood of negative unintended consequences for certain groups. In this way, future efforts to expand contraceptive access can deliberately work to design programs that meet all people’s contraceptive needs, with the ultimate goal of supporting individuals’ reproductive autonomy and advancing health equity.
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Colen, S., Like a mother to them’: Stratified reproduction and West Indian childcare workers and employers in New York, in Conceiving the new world order: The global politics of reproduction, F.R. Ginsburg, R., Editor. 1995. p. p. 78-102.
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Stokols, D., Translating social ecological theory into guidelines for community health promotion. Am J Health Promot, 1996. 10(4): p. 282-98. 15
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Snyder, A.H., et al., The impact of the Affordable Care Act on contraceptive use and costs among privately insured women. Womens Health Issues, 2018. 28(3): p. 219-223.
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Lessard, L.N., et al., Contraceptive features preferred by women at high risk of unintended pregnancy. Perspect Sex Reprod Health, 2012. 44(3): p. 194-200.
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Figure legend:
Figure 1. Person-Centered Contraceptive Care Framework
18
Racism
Sexuality, gender & other discrimination
Sexism
Healthcare financing & infrastructure
Government regulations
Contraceptive coverage
Family & peer relationships
Cultural & religious biases
Economic injustice Clinical & public health priorities
Power imbalance in healthcare
Domestic & intimate partner violence
COMMUNITY & FAMILY CONTEXT
POLICY & HEALTH SYSTEMS CONTEXT
HISTORICAL, SOCIAL, POLITICAL & ECONOMIC CONTEXT
Person-Centered Contraceptive Care Framework Stigma Availability of acceptable contraceptive methods Reproductive coercion
Continuum of Care
Outreach & Trust Building
Access
Quality
Follow-up Support
• Sexual and reproductive health information and education
• Free/affordable services for all
• Patient-centered, non-coercive counseling
• No cost, barrier-free LARC removal
• Flexible options for care delivery modalities
• Evidence-based contraceptive provision
• Facilitated method switching
• Implicit bias and structural competency training
• Support for side effect management
• Same-day access to all methods, including emergency contraception
• Patient-centered pregnancy options counseling and referrals
• Integration with other services, including referrals as needed
• Protection of confidentiality in all followup communication
• Quality improvement systems that include measures of patient experience
• Different formats of information delivery (app, call, text)
• Facilitation of dialogue between community and healthcare institutions • Awareness raising around available services and right to high quality care • Referral network and care coordination
• Easy scheduling and extended hours • Support for navigating barriers to services (e.g., via transportation and childcare)
Community engagement in all efforts