A qualitative study of the impact of coronavirus disease (COVID-19) on psychological and financial wellbeing and engagement in care among men who have sex with men living with HIV in Thailand.

OBJECTIVES: The coronavirus disease (COVID-19) pandemic is an unprecedented event with massive global health and socio-economic impacts on vulnerable populations, especially people living with HIV. The epidemic has severely affected Thailand's economy and potentially impacted the financial and psychological wellbeing of Thai HIV-positive men who have sex with men (MSM). METHODS: Between 15 June and 10 December 2020, we conducted qualitative interviews with 26 MSM living with HIV in Thailand who participate in an Adam's Love We Care Study. We intentionally recruited individuals who may have experienced a greater impact of COVID-19. Interviews explored worry, stigma and stress surrounding COVID-19, and multiple domains of potential COVID-19 impact: financial/employment, HIV service delivery and antiretroviral (ART) adherence during the first 10 months of the COVID-19 pandemic. RESULTS: Participants perceived themselves as immunocompromised and susceptible, and feared contracting COVID-19. Participants worried that contracting COVID-19 would lead to HIV status disclosure and stigmatization. Participants had considerable worry about job loss as a result of the economic downturn, and some shared challenges associated with relocation and re-engaging with HIV care. Financial stress and lack of basic necessities caused by job losses were commonly reported. Participants reported optimal ART adherence as a consequence of local HIV service delivery responses, convenient ART refills and Adam's Love online support interventions. CONCLUSIONS: Our study highlights that the COVID-19 pandemic produced high levels of anxiety and concerns about additional stigma among MSM living with HIV. It had a significant negative effect on the daily lives of our participants. These findings indicate a need for the provision of confidential COVID-19 diagnosis and care, relief programmes, vaccination roll-out equity, and addressing employment needs of vulnerable populations.

Prioritizing Parental Worry Associated with Duchenne Muscular Dystrophy Using Best-Worst Scaling.

Duchenne muscular dystrophy (DMD) is a progressive, fatal pediatric disorder with significant burden on parents. Assessing disease impact can inform clinical interventions. Best-worst scaling (BWS) was used to elicit parental priorities among 16 short-term, DMD-related worries identified through community engagement. Respondents viewed 16 subsets of worries, identified using a balanced, incomplete block design, and identified the most and least worrying items. Priorities were assessed using best-worst scores (spanning +1 to -1) representing the relative number of times items were endorsed as most and least worrying. Independent-sample t-tests compared prioritization of parents with ambulatory and non-ambulatory children. Participants (n = 119) most prioritized worries about weakness progression (BW score = 0.64) and getting the right care over time (BW = 0.25). Compared to parents of non-ambulatory children, parents of ambulatory children more highly prioritized missing treatments (BW = 0.31 vs. 0.13, p < 0.001) and being a good enough parent (BW = 0.06 vs. -0.08, p = 0.010), and less prioritized child feeling like a burden (BW = -0.24 vs. -0.07, p < 0.001). Regardless of child's disease stage, caregiver interventions should address the emotional impact of caring for a child with a progressive, fatal disease. We demonstrate an accessible, clinically-relevant approach to prioritize disease impact using BWS, which offers an alternative to the use of traditional rating/ranking scales.

Genomic sequencing for psychiatric disorders: promise and challenge.

Whole genome/exome sequencing (WGS/WES) integration into medicine will yield a new disease paradigm moving from clinical to molecular diagnosis. This paradigm will present significant challenges in the interpretation of sequence data and clinicians will face dilemmas about if, when and how to offer information to patients. Sequencing will ultimately reshape psychiatry in predicting disease risk and lead to greater understanding of aetiology, prognosis and/or treatment response. This commentary on the ethics of returning WGS/WES results describes the nature of the data as a dynamic health resource, the importance of understanding participant motivations, determinations of personal utility and potential effects of WGS/WES on self-concept and well-being. As this technology unfurls, ethical challenges will not be novel but they will be compounded by the volume and scope of the data. Research into participant/patient perceptions, preferences and outcomes will identify areas of caution and prepare psychiatrists for eventual integration into clinical care.

Genetic Risk Assessment in Psychiatry.

Most psychiatric disorders of pediatric and adult onset are caused by a complex interplay of genetic and environmental risk factors. Risk assessment in genetic counseling is correspondingly complicated. Outside of neurodevelopmental conditions, genetic and genomic testing has not achieved clinical utility. Genetic counselors most often base risk assessment on the client's medical and family history and empiric recurrence risk data. In rare cases significant familial risk may arise from variants of large effect. New approaches such as polygenic risk scores have the potential to inform diagnosis and management of affected individuals and risk status for at-risk individuals. Research on the genetic and environmental factors that increase risk for schizophrenia and etiologically related disorders are reviewed, guidance in determining and communicating risks to families is delivered, and new opportunities and challenges that will come with translating new research findings to psychiatric risk assessment and genetic counseling are anticipated.

Ethical issues in psychiatric genetics research: points to consider.

RATIONALE: Psychiatric genetics research warrants ethical consideration because of the complex nature of conducting research among affected families. When researchers identify compelling reasons to offer susceptibility data to participants, they face challenges to identify an infrastructure to convey information and means to ensure that undue research risks are not encountered. OBJECTIVES: To outline ethical issues in conducting research in psychiatric genetics with the aim of considering how the identification of susceptibility genes for psychiatric disorders may shape future research; to provide points to consider for conducting psychiatric genetics research with the anticipation of offering susceptibility data to participants. METHODS: Ethical issues that arise in psychiatric genetics research conducted with affected families are discussed along with reasons susceptibility data may be offered to participants in the future. RESULTS: We suggest that all researchers, even those who have no intention of offering susceptibility genetic results, consider how advances in knowledge might affect the provision of research findings. CONCLUSIONS: Existing ethical issues are likely to become even more pressing as susceptibility genes are identified for major psychiatric disorders. It behooves researchers, mental health professionals, and geneticists to consider how to use our growing scientific knowledge to best help participants in ways that anticipate and prevent, rather than respond to, ethical conflicts.

Parenting with bipolar disorder: coping with risk of mood disorders to children.

Children of individuals with bipolar disorder (BPD) have increased risk for mood disorders and other adverse psychosocial outcomes due to genetic and environmental risk. Though parents with BPD are aware of increased risk to children, little is known about efforts undertaken in response or their perceived utility. Among parents who self-report with BPD, this study identifies key variables associated with parental coping with children's risk of mood disorders; and explores the relationship between monitoring children's moods and perceived coping efficacy. In this U.S. study, active parental coping with, and cognitive distancing from, child's risk were measured using novel scales. Parents (n = 266) who self-identified as having BPD completed a web-based survey. They had at least one unaffected child. Most participants endorsed monitoring their children's moods. Monitoring was associated with increased perceived control over the child's well-being (p < 0.005), but not feeling less worried. Active parental coping with risk to children was positively associated with active coping with own illness (ß = 0.25, p = 0.001), family history (ß = 0.24, p = 0.001), and self-report of current depression (ß = 0.16, p = 0.037), explaining 13.8% of the variance (F = 8.81, p < 0.001). Cognitive distancing from the child's risk was positively associated with confidence in diagnosis (ß = 0.25, p = 0.001), and negatively associated with self-report of current mania (ß = -0.19, p = 0.007), perceiving BPD as genetic (ß = -0.26, p < 0.001) and having more children (ß = -0.20, p = 0.004); explaining 16.2% of the variance (F = 8.63, p < 0.001). Parents' adaptation to their own BPD was modestly correlated with active coping with child's risk (r = 0.15, p < 0.05) but not with cognitive distancing. The findings support the importance of understanding causal attributions and the value of genetic education and counseling for parents with BPD. Further research is necessary to elucidate the psychological benefits of active coping versus cognitive distancing from child's risk, and explore additional variables that predict parental coping with children's risk of mood disorders.