Pregnant Latinas' perspectives on pursuing expanded carrier screening: "It is better to know than not".

With the advance of genetic technologies, the use of expanded carrier screening (ECS) in the prenatal setting is growing. ECS tests for a wide range of inherited genetic disorders regardless of racial/ethnic background and family history. Latinxs are an important ECS stakeholder group as they are the largest minority group with the highest fertility rate in the United States. Yet, the Latinx population has, to date, been underrepresented and understudied in genetics/genomics research. We conducted a study to explore the knowledge and perspectives of pregnant Latinas regarding ECS in which descriptive statistics and content analysis were used to analyze the data. Thirty-two pregnant Latinas - mostly of low educational levels (no education beyond high school) and with less than $20,000 annual household income living in rural areas were surveyed, provided with education about ECS, and interviewed. Participants were found to possess limited knowledge about ECS prior to being interviewed. Most (68.8%), however, expressed interest in pursuing ECS following the educational component that explained ECS. Their interest was mainly driven by the desire to know their baby's chance of developing a genetic disorder, the low risk of ECS procedures for both pregnant Latinas and their fetus, and the opportunity to better prepare for raising a child with a genetic condition. Our findings contribute to the limited research in the genetics/genomics field by providing in-depth insights into the perspectives of pregnant Latinas regarding ECS. Obstetric providers and genetic counselors should provide culturally appropriate education and counseling to empower pregnant Latinas to make informed decisions about the use of ECS.

Health Literacy and Patient Activation in the Pediatric to Adult Transition in Systemic Lupus Erythematosus: Patient and Health Care Team Perspectives.

OBJECTIVE: To identify perceived health literacy (HL) and patient activation (PA) needs during the transition from pediatric to adult rheumatology among patients with childhood-onset systemic lupus erythematosus (cSLE). METHODS: Semistructured interviews of patients and health care professionals were conducted from November 2019 through May 2020, until thematic saturation was achieved. Interviews were audio-recorded, transcribed, coded, and analyzed using thematic analysis. RESULTS: Thirteen post-transition adult female participants with cSLE were recruited from a public safety-net hospital system or from private practice. Thirteen health care team members were recruited from two pediatric and four adult rheumatology clinical sites serving patients in the same metropolitan area. Patients and health care team members acknowledged numerous HL components as important to transition, including language fluency, education, SLE-specific knowledge, self-efficacy, and accurate knowledge of personal medical history. Our interviews found PA to be an important component of the transition process, driven by internalization of the implications of cSLE diagnosis, self-education, autonomy, introspection, and trustworthy doctor-patient relationships. Patients valued access to their online electronic medical record, recommended multimodal SLE-specific education materials, and desired increased access to social workers. Health care team members stressed the importance of early preparation for transition and use of mobile medical applications and endorsed interventions such as lupus camp and increased partnership with psychologists and social workers. CONCLUSION: HL and PA are perceived by patients and health care team members as substantially influencing transition success. Further research is needed to evaluate whether interventions to improve HL and PA positively influence cSLE transition outcomes.

Therapeutic recreation camps for youth with childhood-onset systemic lupus erythematosus: perceived psychosocial benefits.

BACKGROUND: The psychosocial burden of having a chronic disease can be substantial for adolescents with childhood-onset systemic lupus erythematosus (cSLE). Current literature is scarce on interventions that can improve psychosocial outcomes for this population. Therapeutic recreation camps have been proposed as a beneficial experience for chronically ill pediatric populations. However, their effective components have not been well characterized in patients with cSLE. In this study, we sought to understand the various components of the camp experience for adolescents with cSLE from both the patient and parent perspective. METHODS: We recruited patients with cSLE who had participated in one or more annual, weekend-long recreational lupus camp(s) near Dallas, Texas. Semi-structured in-depth telephone interviews were conducted from March-June 2020 with both the patients and parents. Questions focused on overall patient experience, psychosocial impact of camp participation, coping skills gained, and opportunities to prepare for the transition from pediatric to adult care. Interviews were coded and analyzed using inductive thematic analysis. RESULTS: We interviewed 9 current and former campers (ages 16-24), including a current camp counselor, and 3 of their parents separately. Reported benefits included a positive impact on social support through peer bonding, opportunities to develop coping mechanisms through structured activities and peer/medical staff interactions, opportunities for education about the cSLE disease experience, improved adherence through peer modeling, overall increase in self-efficacy, and better parental insight into the patient experience. Participants also provided suggestions for expansion and improvement in program development to optimize educational opportunities for both campers and parents. In addition, they advocated for longitudinal social support and community building. CONCLUSIONS: In this qualitative study, in which cSLE patients and their parents reflected on their experiences with therapeutic recreation camps, we found several perceived benefits impacting the patient and parent experience. Participants expressed a desire for more educational opportunities that could contribute to their successful transition from pediatric to adult care. Further studies are needed to demonstrate the effects of therapeutic recreation camps on the psychosocial health of this population.

"You Just Have to Keep Going, You Can't Give Up": Coping mechanisms among young adults with lupus transferring to adult care.

INTRODUCTION: Coping mechanisms and emotional regulation are important contributors to psychosocial health during stressful life events. We sought to describe the coping and emotional responses of persons with childhood-onset systemic lupus erythematosus during the transfer from pediatric to adult healthcare. METHODS: Semi-structured in-depth one-on-one interviews were conducted with 13 young women aged 18-24 of minority background who had transferred to adult care in a public hospital system. Thematic analysis was used to identify themes motifs from the data. RESULTS: Participants described the use of (1) problem-focused coping such as the use of clear communication and self-education, (2) adaptive emotion-focused coping such as cognitive reframing and acceptance, (3) social coping including support-seeking, (4) meaning-making coping including positive religious framing and viewing events as learning opportunities for growth, and (5) disengaged coping including denial and social isolation. A range of emotional responses associated with the transfer were described including fear, anger, loss, and feelings of empowerment and excitement. CONCLUSION: Effective coping and emotional regulation are modifiable factors that may impact transfer-related outcomes and psychosocial health. Addressing coping mechanisms is relevant to the optimized transfer to adult care.

Black Men's Experiences With Health care: Individuals' Accounts of Challenges, Suggestions for Change, and the Potential Utility of Virtual Agent Technology to Assist Black Men With Health Management.

Black men have the highest age-adjusted death rate of any major race-gender group in America. Understanding their perceived barriers to accessing health care may benefit future interventions working to increase Black men's health care engagement. Data collected from focus groups of Black men(N = 67), key informant interviews(N = 12), and interviews(N = 5) with participants who pilot tested an online health education system (called "Gabe") were analyzed to explore their health care experiences and how computer-based health programs might better assist Black men. Concerns pertaining to health care systems' failure to recognize the diversity among Black men, and physicians' lack of sociocultural awareness about the challenges they regularly face, were most salient. Building trust with providers was cited as being central to engagement, with Gabe users perceiving the system to be both trustworthy and accessible. Participants reported an openness to technology assisting with health management and provided suggestions of how online systems can meet the needs of Black men.

Attitudes toward Pursuing Genetic Testing among Parents of Children with Autism Spectrum Disorder in Taiwan: A Qualitative Investigation.

BACKGROUND: The diagnosis of autism spectrum disorder (ASD) cases is increasing in Taiwan. Genetic testing for children with ASD offers several potential benefits and is available with out-of-pocket expenses. Parents play a pivotal role in having their children with ASD tested; therefore, understanding their perceptions of, and perceived barriers to genetic testing is vital. METHODS: Semi-structured interviews were conducted with 39 parents of children with ASD in Taiwan. Interviews were recorded and transcribed verbatim. NVivo 12 software (QSR International, Doncaster, Australia) was used to facilitate an inductive coding methodology. RESULTS: The majority of participants (74.4%) supported ASD genetic testing for their children with ASD, citing reasons such as clarifying ASD etiology, well-informed family planning, contributing to ASD research, and early ASD detection and intervention. Others indicated that they were either against such testing (17.9%), or unsure (7.7%) about whether to take their children with ASD for genetic testing. Those who were opposed reported that their main concerns related to perceptions of no value of genetic testing, potential for family conflict, and financial difficulties. CONCLUSIONS: Most of the parents of children with ASD that we interviewed expressed favorable views of ASD genetic testing. There exists a need to increase parental access to education and counseling, and to include testing coverage in Taiwanese national health insurance.

Clinical Team Perspectives on the Psychosocial Aspects of Transition to Adult Care for Patients With Childhood-Onset Systemic Lupus Erythematosus.

OBJECTIVE: The transition from pediatric to adult care for youth with childhood-onset systemic lupus erythematosus (SLE) is a vulnerable period. Adverse outcomes during this transition include gaps in care, unscheduled health care utilization, loss of insurance, and high disease activity. The objective of this study was to examine the clinical care teams' perspective on the psychosocial factors associated with transition outcomes, which are poorly understood in this population. METHODS: We conducted in-depth interviews with clinical care team members who interact with childhood-onset SLE patients during transfer from pediatric to adult rheumatology. A semistructured interview guide was used to prompt participants' perspectives about the psychosocial factors associated with the transition process for patients with childhood-onset SLE. Audio recordings were transcribed and analyzed using the constant comparative method. We stopped conducting interviews once thematic saturation was achieved. RESULTS: Thirteen in-depth interviews were conducted. Participants included pediatric rheumatologists (n = 4), adult rheumatologists from both academic and private practice settings (n = 4), nurses (n = 2), a nurse practitioner, a social worker, and a psychologist. We identified several themes deemed by clinical care teams as important during the transition, including the impact of the family, patient resilience and coping mechanisms, the role of mental health and emotional support, and the need for education, peer support, and social connectedness. CONCLUSION: We identified several psychosocial themes that clinical team members believe impact the transition of patients with childhood-onset SLE into adult care. The role of parental modeling, youth resilience, mental health and emotional care, improved childhood-onset SLE education, and structured peer support and social connectedness are highlighted, which may be amenable to interventions.