This is the first study aimed at understanding perceived barriers to care among transgender youth and their caregivers. Themed barriers to care led to the following recommendations: (1) mandatory training on gender-affirming health care and cultural humility for providers/staff; (2) development of protocols for the care of young transgender patients, as well as roadmaps for families; (3) asking and recording of chosen name/pronoun; (4) increased number of multidisciplinary gender clinics; (5) providing cross-sex hormones at an age that permits peer-congruent development; and (6) designating a navigator for transgender patients in clinics.
Genotype-Driven Recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, “information is valuable,” and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally.
As genetic research is increasingly conducted in children, it is important to understand how parents make decisions about enrolling their children and what they think about receiving their children’s genetic research results. We conducted semi-structured phone interviews with 23 parents of children enrolled in genetic studies of autism or diabetes. Qualitative thematic analysis focused on two important components of genetic research and genotype-driven recruitment: participation in genetic research and return of results. Our findings suggest that parents’ preferences and perspectives may be specific to their child’s disease and the needs of the family as a whole. Assessing the expectations of target research populations will be beneficial for developing best practices for pediatric genetic research, return of results, and genotype-driven recruitment.
Exome sequencing and whole genome sequencing (ES/WGS) present patients and research participants with the opportunity to benefit from a broad scope of genetic results of clinical and personal utility. Yet, this potential for benefit also risks disenfranchising populations such as African Americans (AAs) that are already underrepresented in genetic research and utilize genetic tests at lower rates than other populations. Understanding a diverse range of perspectives on consenting for ES/WGS and receiving ES/WGS results is necessary to ensure parity in genomic health care and research. We conducted a series of 13 focus groups (n=76) to investigate if and how attitudes toward participation in ES/WGS research and return of results from ES/WGS differ between self described AAs and non-AAs. The majority of both AAs and non-AAs were willing to participate in WGS studies and receive individual genetic results, but the fraction not interested in either was higher in AAs. This is due in part to different expectations of health benefits from ES/WGS and how results should be managed. Our results underscore the need to develop and test culturally tailored strategies for returning ES/WGS results to AAs.
This study assessed what online resources transgender youth and their caregivers use to acquire information about transgender health. Through a variety of settings, including subspecialty clinics, support groups, and online solicitation, we recruited caregivers of transgender youth aged 22 years or younger and self-identified transgender youth aged 14-22 years. We used a mixed methods approach of conducting in-person focus groups, interviews in person or through phone, and an online survey that allowed for increased flexibility for participants and to triangulate key themes from multiple data sources. Scripts were semistructured, and prompts were focused on resources accessed by transgender youth and their caregivers. We had a total of 65 participants, including 50 caregivers and 15 youth. Five main themes emerged from participants on why they sought out information on the Internet and what they found in their online searches. These themes include (1) exploring gender identity, (2) filling knowledge gaps, (3) seeking support networks, (4) finding transgender-friendly providers, and (5) encountering misinformation. Our findings demonstrate the need for reliable trustworthy content online, the importance of the virtual community to support both youth and caregivers, and the challenge of navigating misinformation that is often faced by transgender youth as they navigate online resources. We propose partnering with professional organizations, such as the American Academy of Pediatrics or World Professional Association of Transgender Health, to promote evidence-based guidelines, position statements, and online information on healthcare for transgender youth.
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