Empowering Choice and Decision-Making
As more biomedical prevention options become available, patients, in collaboration with their providers, will have to determine which method is right for them. Learn more about how a shared decision-making process that centers patient choice can facilitate a successful HIV prevention strategy.
WHAT WE KNOW
from the literature
1. Patients process information about new HIV prevention modalities by integrating information into their existing knowledge and understanding.
- This paper demonstrates that LGBTQ young people of color have a sophisticated understanding of concepts such as immunology, antibodies, half-life, and extended release, but need focused education and support to apply this knowledge to understanding how biomedical prevention (especially emerging modalities) can work for them.
2. Patients want providers to acknowledge the wealth of knowledge and lived experience that they bring to conversations about their own health.
- These papers present evidence that providers who prioritize learning about their patients’ sexual identity and practices deliver more personalized and informed sexual health care. Engaging in open conversation about sex may help minimize stigma experienced by patients.
- Maloney, K. M., Krakower, D. S., Ziobro, D., Rosenberger, J. G., Novak, D., & Mayer, K. H. (2017). Culturally competent sexual healthcare as a prerequisite for obtaining preexposure prophylaxis: findings from a qualitative study. LGBT health, 4(4), 310-314.
- Yang, C., Krishnan, N., Painter, J. E., & Latkin, C. (2019). The association between disclosure of same sex behavior to healthcare providers and PrEP awareness among BMSM in Baltimore. AIDS and Behavior, 23(7), 1888-1892.
- Calabrese, S. K., Magnus, M., Mayer, K. H., Krakower, D. S., Eldahan, A. I., Hawkins, L. A. G., Betancourt, J. R. (2016). Putting PrEP into practice: lessons learned from early-adopting US providers’ firsthand experiences providing HIV pre-exposure prophylaxis and associated care. PLoS One, 11(6), e0157324.
3. Using inclusive language with patients can be motivating and empowering.
- These studies present preliminary findings that motivational interviewing (e.g. reflective questioning, person-centered and non-judgmental communication) may be an effective strategy utilized by clinicians to increase PrEP uptake.
- Dale, S. K. (2020). Using Motivational Interviewing to Increase PrEP Uptake Among Black Women at Risk for HIV: an Open Pilot Trial of MI-PrEP. Journal of racial and ethnic health disparities, 7(5), 913-927.
- Moitra, E., van den Berg, J. J., Sowemimo-Coker, G., Chau, S., Nunn, A., & Chan, P. A. (2019). Open pilot trial of a brief motivational interviewing-based HIV pre-exposure prophylaxis intervention for men who have sex with men: preliminary effects, and evidence of feasibility and acceptability. AIDS care.
- These papers provide specific strategies to improve providers’ communication style, especially with LGBTQIA+ patients, including: positively framing sexual health messages, normalizing sexual behavior, avoiding stereotypical assumptions and better understanding their patients’ personal lives.
- Schwartz, J., & Grimm, J. (2020). Communication Strategies for Discussing PrEP with Men Who Have Sex with Men. Journal of Homosexuality, 1-14.
- Devarajan, S., Sales, J. M., Hunt, M., & Comeau, D. L. (2020). PrEP and sexual well-being: A qualitative study on PrEP, sexuality of MSM, and patient-provider relationships. AIDS care, 32(3), 386-393.
- Margolies, Liz LCSW; Brown, Carlton G. PhD, RN, AOCN, NEA-BC, FAAN Increasing cultural competence with LGBTQ patients, Nursing: June 2019 - Volume 49 - Issue 6 - p 34-40 doi: 10.1097/01.NURSE.0000558088.77604.24
4. Shared decision-making is a collaborative communication strategy used in person-centered healthcare to support patients in choosing an HIV prevention method based on their preferences, needs and values.
- These studies indicate that shared decision-making can be particularly useful when working with individuals with intersectional identities and/or those who belong to multiple groups that have historically been marginalized in health care.
- Peek, Monica E., et al. "Development of a conceptual framework for understanding shared decision making among African-American LGBT patients and their clinicians." Journal of general internal medicine 31.6 (2016): 677-687.
- Moira C. McNulty, M. Ellen Acree, Jared Kerman, H. “Herukhuti” Sharif Williams & John A. Schneider (2021) Shared decision making for HIV pre-exposure prophylaxis (PrEP) with black transgender women, Culture, Health & Sexuality, DOI: 10.1080/13691058.2021.1909142
- Baig, A. A., Lopez, F. Y., DeMeester, R. H., Jia, J. L., Peek, M. E., & Vela, M. B. (2016). Addressing Barriers to Shared Decision Making Among Latino LGBTQ Patients and Healthcare Providers in Clinical Settings. LGBT health, 3(5), 335–341. https://doi.org/10.1089/lgbt.2016.0014
- There is evidence that patient-led decision-making (a type of shared decision-making) may be particularly well-suited for HIV prevention decisions. This strategy is appropriate when there are several treatment or prevention options that are equally valid and the decision can be primarily made by the patient.
- Research suggests organizational and systems level characteristics (e.g. leadership, workflow, payment models and clinical practice protocols) are integral for the successful adoption of shared decision-making by providers.
- Alsulamy, N., Andrew, L., Thokala, P., & Alessa, T. (2020). What influences the implementation of shared decision making: an umbrella review. Patient Education and Counseling.
- Scholl, I., LaRussa, A., Hahlweg, P., Kobrin, S., & Elwyn, G. (2018). Organizational-and system-level characteristics that influence implementation of shared decision-making and strategies to address them—a scoping review. Implementation Science, 13(1), 1-22.
WHAT IT MEANS
for programs and policies
Patients who may benefit from PrEP are diverse in their demographics and sexual healthcare needs.
Better understanding a patient’s lived-experience, sexual practices and motivations for using PrEP can help a provider recommend an HIV prevention modality best suited for that patient’s needs and lifestyle.
Inclusive and affirming language should be used when developing HIV prevention programs and policies.
Gender-neutral terms, person-first language and the use of descriptive phrases over labels are small changes that help cultivate safe spaces where patients feel comfortable disclosing sensitive information around their sexual practices and health.
Shared decision-making is a strategy used to overcome implicit provider bias and inequitable health communication across diverse patient populations.
Routinizing patient-provider collaborations promotes equity by enabling all patients to take ownership of their health and make an informed decision when considering the various HIV prevention modalities available.
The implementation of shared decision-making must be considered beyond interpersonal interactions.
Integrating shared decision-making approaches into clinical interactions will require strategies to incentivize their use at the organizational and systems level, for example reimbursements for time spent on shared decision-making.
BLUPrInt TOOLS
for this topic area
Resources and tools in these sections of the PrEP Program Builder are informed by and reflect the lessons in this key topic…