<p><strong>PURPOSE: </strong>We explored attitudes and beliefs pertaining to sexual and reproductive health (SRH) among unmarried, female, resettled Bhutanese refugees 16-20&nbsp;years.</p>

<p><strong>METHODS: </strong>Fourteen interviews were analyzed using the constant comparison method, and major themes were identified.</p>

<p><strong>RESULTS: </strong>SRH was stigmatized for unmarried youth, making seeking information about SRH or accessing family planning difficult. There were many misconceptions about access to SRH.</p>

<p><strong>CONCLUSIONS: </strong>Universal, culturally, and linguistically appropriate comprehensive SRH education is recommended for female Bhutanese refugee youth. Terminology used should take into account&nbsp;differences in conceptualization of concepts like dating. Educators and health care providers should clearly describe consent and confidentiality laws regarding adolescent SRH services.</p>

<p>Purpose: (1) To describe psychosocial, medical, and mental health outcomes of young transgender women (YTW) living with or at risk for HIV infection and (2) to explore barriers and facilitators to medical and mental health services across the HIV care continuum. Methods: We conducted a cross-sectional observational study of YTW aged 16-24 years who were at risk for contracting or living with HIV. Participants were recruited from an adolescent HIV clinic and local community-based organizations that serve YTW. The single study visit included: a computer-assisted self-interview of demographics, medical and mental health measures, a qualitative semi-structured interview, optional rapid HIV testing for HIV-negative/status-unknown participants, and a chart review to determine rates of antiretroviral therapy (ART) prescription and viral suppression among HIV+ participants. Descriptive statistics were used for quantitative data, and a modified-grounded theory approach was used for qualitative analysis. Results: Participants (n=25) had a mean age of 21.2 years; the majority were non-white (76%), had less than a college education (76%), were unemployed (52%), and had an income &lt;$12,000/year (80%). More than one-third were unstably housed (36%) and uninsured (36%), and 28% reported having transactional sex. A majority had taken gender-affirming hormones (72%), but 17% obtained them from a source other than their doctor. Among HIV+ participants (n=8), 50% were prescribed ART and all four participants achieved viral suppression. Qualitative themes included lack of respect for or misunderstanding of gender identity, mismatch of mental health needs with available provider skills, challenges in finding HIV prevention services during adolescence or when transitioning to adult care, and importance of workforce diversity, including representation of transgender women in care teams. Conclusion: This study identified significant unmet mental health needs and several barriers and facilitators to engaging in healthcare for YTW across the HIV care continuum. Our data suggest an urgent need for provider competency training in gender-affirming care and integration of appropriate mental health and gender-affirming treatment with HIV prevention and treatment services for this population.</p>

<p><strong>PURPOSE: </strong>Our primary aim was to explore themes regarding attitudes toward HIV pre-exposure prophylaxis (PrEP) among young transgender women (YTW), in order to develop a theoretical model of PrEP uptake in this population disproportionally affected by HIV.</p>

<p><strong>METHODS: </strong>Qualitative study nested within a mixed-method study characterizing barriers and facilitators to health services for YTW. Participants completed an in-depth interview exploring awareness of and attitudes toward PrEP. Key themes were identified using a grounded theory approach.</p>

<p><strong>RESULTS: </strong>Participants (n&nbsp;= 25) had a mean age of 21.2&nbsp;years (standard deviation 2.2, range 17-24) and were predominately multiracial (36%) and of HIV-negative or unknown status (68%). Most&nbsp;participants (64%) reported prior knowledge of PrEP, and 28% reported current use or intent to use PrEP. Three major content themes that emerged were variability of PrEP awareness, barriers and facilitators to PrEP uptake, and emotional benefits of PrEP. Among participants without prior PrEP knowledge, participants reported frustration that PrEP information has not&nbsp;been widely disseminated to YTW, particularly by health care providers. Attitudes toward PrEP were overwhelmingly positive; however, concerns were raised regarding barriers including cost, stigma, and adherence challenges. Both HIV-positive and negative participants discussed emotional and relationship benefits of PrEP, which were felt to extend beyond HIV prevention alone.</p>

<p><strong>CONCLUSIONS: </strong>A high proportion of YTW in this study had prior knowledge of PrEP, and attitudes toward PrEP were positive among participants. Our findings suggest several domains to be further explored in PrEP implementation research, including methods of facilitating PrEP dissemination and emotional motivation for PrEP uptake.</p>

<p><strong>OBJECTIVE: </strong>We aimed to develop a model of the illness experience for youth with systemic lupus erythematosus (SLE)/mixed connective tissue disease (MCTD).</p>

<p><strong>METHODS: </strong>We conducted 32 semi-structured interviews with 16 outpatient youth with SLE/MCTD, age 11 to 22 years, and their parents. We qualitatively defined key features of illness for families and distinguished profiles of youth adapting well vs poorly to SLE/MCTD. We then related these profiles to features of illness, patient-level attributes and outcomes.</p>

<p><strong>RESULTS: </strong>Experiences with SLE/MCTD grouped into five themes: managing disease, limitations, stigma, illness uncertainty and psychological coping. Youth adapting well experienced minimal challenges in these areas. Youth adapting poorly (4/16) experienced significant challenges in &gt;1 thematic area, and were older with lower socioeconomic status, quality of life and psychosocial functioning, and increased disease-related morbidity. They also described suboptimal treatment adherence, healthcare utilization and transition to adult care. These findings support a dynamic model in which illness adaptation and outcomes are shaped by patient characteristics and five central illness-related challenges.</p>

<p><strong>CONCLUSION: </strong>Further testing of our model of illness experience may help guide comprehensive and personalized care of youth with SLE/MCTD, with targeted supports for youth at risk for negative adaptation to illness and poor outcomes.</p>

<p><strong>OBJECTIVE: </strong>To describe influences on shared decision making (SDM) between primary care pediatricians and parents of young children with autism spectrum disorder (ASD).</p>

<p><strong>METHODS: </strong>We conducted a qualitative study using key informant interviews with 20 pediatricians of varying experience from 10 primary care practices and 20 English speaking parents of young children (ages 2-5 years) with a parent reported diagnosis of ASD. Subjects were recruited through purposive sampling. Interviews were audio taped, transcribed verbatim and analyzed using an integrated approach to data analysis. Differences in coding were resolved by consensus. We achieved thematic saturation and ceased recruitment after 20 interviews were completed within each group.</p>

<p><strong>RESULTS: </strong>Three primary themes emerged: 1) pediatricians and parents reported knowledge gaps by pediatricians about ASD treatments and community resources and ambiguity regarding the pediatrician's role in ASD care; 2) there was little communication between parents and pediatricians about treatment choices; 3) use of CAM treatments created conflict between pediatricians and parents and, as a result, parents may independently pursue treatments, without benefit of discussing safety and efficacy with pediatricians. Despite these barriers, parents desired increased support and guidance from their pediatricians, including for CAM.</p>

<p><strong>CONCLUSIONS: </strong>Much work is needed to effectively foster SDM in the context of ASD treatment decisions in primary care, including pediatrician training in ASD to enhance knowledge about evidence-based and novel treatments, clinical practice guidelines and community resources.</p>

<p>The objective of this study was to document barriers to care, help-seeking behaviors, and the impact of a community-based patient navigation intervention on patient activation levels among Bhutanese refugees in the U.S. Data sources comprised 35 intake and 34 post-intervention interviews with program participants, 14 intake and 14 post-intervention interviews with patient navigators, and 164 case notes. Textual data were analyzed using the constant comparison method. Patient activation level was assessed at both time points. Participants had limited English proficiency (97&nbsp;%), limited literacy (69&nbsp;%), and the lowest level of patient activation (69&nbsp;%). Participants routinely experienced complex insurance access, coverage, and payment problems and had limited healthcare-related life skills. Help-seeking began within social networks, with high reliance on bilingual, literate family members perceived to have experience with "the system." Help-seeking was not stigmatized and was instead consistent with societal norms valuing mutual assistance. Participants preferred helpers to act as proxies and required repeated social modeling by peers to gain confidence applying healthcare-related life skills. Following the intervention, only one-third reported the lowest level of patient activation (35&nbsp;%) and one-third were highly activated (32&nbsp;%). Bhutanese refugees overcome healthcare access barriers by seeking help from a network of support that begins within the community. Community health workers serving as patient navigators are readily sought out, and this approach is concordant with cultural expectations for mutual assistance. Community health workers serving immigrant groups should model healthcare-related life skills in addition to providing direct assistance.</p>

<p><strong>BACKGROUND: </strong>Untreated mental health problems may result in poor outcomes for youth with systemic lupus erythematosus (SLE) and mixed connective tissue disease (MCTD). We investigated perceptions, barriers and facilitators for mental healthcare of these youth.</p>

<p><strong>METHODS: </strong>We conducted 32 semi-structured interviews with 16 outpatient youth with SLE/MCTD, ages 11-22 years, and their parents. We used purposive sampling to deliberately obtain the experiences of youth screened during a previous study for depression and anxiety with the Patient Health Questionnaire 9 and the Screen for Childhood Anxiety and Related Disorders, respectively. We recruited 6 youth with previous positive screens and 10 with negative screens. We assessed interim mental health history, and qualitatively examined perceptions, barriers and facilitators for mental healthcare.</p>

<p><strong>RESULTS: </strong>Youth with a mental health history increased from 6 (38&nbsp;%) at initial screening to 9 (56&nbsp;%) at interview (mean follow-up = 2.1&nbsp;years). Youth receiving mental health treatment increased from 33 to 67&nbsp;%. Youth and parents identified rheumatologists as primary physicians and found mental health screening in rheumatology acceptable. Barriers to mental healthcare included: stigma; fear; uncertainty about getting help; parental emotional burden; minimization by doctors; and limited mental healthcare access. Facilitators included: strong clinician relationships; clinician initiative, sincerity and normalization in discussing mental health; and increased patient/family awareness of mental health issues in SLE/MCTD.</p>

<p><strong>CONCLUSION: </strong>Youth with SLE/MCTD and their parents perceive pediatric rheumatologists as a preferred source for mental health screening, guidance and referral. Interventions addressing barriers and enhancing facilitators may improve mental healthcare for youth with SLE/MCTD.</p>

<p><strong>OBJECTIVE: </strong>To explore barriers to early intervention (EI) evaluation among referred infants and toddlers.</p>

<p><strong>METHODS: </strong>We conducted semistructured interviews with parents of children referred for EI services and with EI staff. We purposively sampled families according to whether they received an EI evaluation. Families were recruited from a randomized controlled trial testing implementation of developmental screening. Parents filled out demographic surveys. Interviews were recorded, transcribed, and coded. We identified themes within and across respondent groups using modified grounded theory.</p>

<p><strong>RESULTS: </strong>We reached thematic saturation after interviewing 22 parents whose child was evaluated by EI, 22 not evaluated, and 14 EI employees. Mean child age at first referral was 16.7 months, and 80% were referred as the result of language concerns. We identified 5 primary themes: (1) Parents reported communication problems with their pediatrician, including misinterpreting reassurance and not understanding the referral process; (2) Many parents saw themselves as experts on their child's development and felt they should decide whether their child pursues EI services; (3) Some families preferred to wait for the developmental concern to resolve or work with their child on their own prior to seeking EI services; (4) For ambivalent parents, practical obstacles especially limited completion of evaluation, but highly motivated parents overcame obstacles; and (5) EI employees perceived that families avoid evaluation because they mistake EI for child protective services.</p>

<p><strong>CONCLUSIONS: </strong>Communication between pediatricians and families that addresses practical logistics, families' perceptions of their child's development and EI, and motivation to address developmental concerns may improve the completion of EI referrals.</p>

<p><strong>BACKGROUND: </strong>Rapid response systems (RRSs) aim to identify and rescue hospitalized patients whose condition is deteriorating before respiratory or cardiac arrest occurs. Previous studies of RRS implementation have shown variable effectiveness, which may be attributable in part to barriers preventing staff from activating the system.</p>

<p><strong>OBJECTIVE: </strong>To proactively identify barriers to calling for urgent assistance that exist despite recent implementation of a comprehensive RRS in a children's hospital.</p>

<p><strong>METHODS: </strong>Qualitative study using open-ended, semistructured interviews of 27 nurses and 30 physicians caring for patients in general medical and surgical care areas.</p>

<p><strong>RESULTS: </strong>The following themes emerged: (1) Self-efficacy in recognizing deteriorating conditions and activating the medical emergency team (MET) were considered strong determinants of whether care would be appropriately escalated for children in a deteriorating condition. (2) Intraprofessional and interprofessional hierarchies were sometimes challenging to navigate and led to delays in care for patients whose condition was deteriorating. (3) Expectations of adverse interpersonal or clinical outcomes from MET activations and intensive care unit transfers could strongly shape escalation-of-care behavior (eg, reluctance among subspecialty attending physicians to transfer patients to the intensive care unit for fear of inappropriate management).</p>

<p><strong>CONCLUSIONS: </strong>The results of this study provide an in-depth description of the barriers that may limit RRS effectiveness. By recognizing and addressing these barriers, hospital leaders may be able to improve the RRS safety culture and thus enhance the impact of the RRS on rates of cardiac arrest, respiratory arrest, and mortality outside the intensive care unit.</p>