Decision Support Needs for Transgender and Gender-Diverse Youth and Families: A Patient-Centered Needs Assessment.

PURPOSE: Due to the intertwining of medical and social decision-making, new approaches to shared decision-making are likely needed for supporting decisions related to the care of transgender and gender-diverse (TGD) adolescents. Prior to developing decision support interventions for TGD youth, a decision support needs assessment must be completed. METHODS: Self-identified TGD youth, family members of TGD youth, clinicians caring for this population, and community advocates participated in one of six group level assessments (GLAs). GLA is a structured, participatory qualitative method that engages diverse groups of stakeholders in generating and evaluating ideas on the topic of interest. Upon completion of all GLAs, a survey was developed and distributed to GLA participants inviting them to rank ideas generated during the GLAs. RESULTS: Six major themes emerged from the GLAs regarding decision support needs, including: improving healthcare provider skills and education, increasing access to support outside the healthcare system, strengthening community and societal support, developing special information resources, supporting youth in leading decision-making about transition, and modifying the healthcare system. In the follow-up survey, improving healthcare provider skills and education was the most commonly chosen top priority. DISCUSSION: Participants identified decision support needs for TGD youth and their families that were mostly distinct from traditional decision support approaches. Participants' focus on the need to improve healthcare provider skills and education provides an opportunity to couple gender-focused education with shared decision-making skills, an approach that may be more sustainable than tools for specific decisions.

Patterns and determinants of patient-delivered therapy uptake among healthcare consumers.

BACKGROUND: Patient-delivered partner therapy (PDPT) may be an effective alternative to traditional approaches to sexually transmitted infection control and prevention. Consumer PDPT uptake is comprised of two behaviors: (1) patient willingness to deliver medicine (patient-delivery) and (2) partner willingness to take it (partner-use). METHODS: 505 participants aged 18 to 47 completed a nationally distributed survey of intentions, attitudes, perceived norms, perceived control, and specific outcome beliefs, normative influences, and barriers/facilitators related to PDPT. Zero-order correlations and multivariate statistics were used to describe PDPT uptake patterns and determinants. RESULTS: Consumer uptake exhibited a highly polarized response pattern with the majority willing to participate in patient-delivery (83%) or partner-use (69.4%). Psychosocial determinants of uptake varied by behavior. Regression models of the psychosocial variables (Adj. R>.75) indicate that, across behaviors, PDPT uptake was most closely associated with perceived norm, followed by attitude and perceived control. Specific factors related to uptake include: beliefs that PDPT makes curing disease easier, reduces the spread of the disease, and ensures people are cured; recommendation by healthcare providers; and that the medicine comes with a note from the healthcare provider and is sealed. Several participant characteristics were also significantly correlated with uptake. CONCLUSIONS: Consumers are willing to engage in PDPT and perceive delivery and use differently. Several beliefs and participant characteristics emerged as potentially important factors in willingness to participate. This information can inform the passage of enabling legislation; the selection of PDPT participants; and the development of provider, patient, and partner informational materials.