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 (β=0.25, p=0.001), family history (β=0.24, p=0.001), and self-report of current depression (β=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 (β=0.25, p=0.001), and negatively associated with self-report of current mania (β=−0.19, p=0.007), perceiving BPD as genetic (β=−0.26, p<0.001) and having more children (β=−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<.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

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

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 (β=0.25, p=0.001), family history (β=0.24, p=0.001), and self-report of current depression (β=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 (β=0.25, p=0.001), and negatively associated with self-report of current mania (β=−0.19, p=0.007), perceiving BPD as genetic (β=−0.26, p<0.001) and having more children (β=−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<.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

Gene therapy as a potential therapeutic option for Duchenne muscular dystrophy: A qualitative preference study of patients and parents.

ObjectivesDuchenne muscular dystrophy (DMD) is a rare neuromuscular disorder that causes progressive weakness and early death. Gene therapy is an area of new therapeutic development. This qualitative study explored factors influencing parents' and adult patients' preferences about gene therapy.MethodsWe report qualitative data from 17 parents of children with DMD and 6 adult patients. Participants responded to a hypothetical gene therapy vignette with features including non-curative stabilizing benefits to muscle, cardiac and pulmonary function; a treatment-related risk of death; and one-time dosing with time-limited benefit of 8-10 years. We used NVivo 11 to code responses and conduct thematic analyses.ResultsAll participants placed high value on benefits to skeletal muscle, cardiac, and pulmonary functioning, with the relative importance of cardiac and pulmonary function increasing with disease progression. More than half tolerated a hypothetical 1% risk of death when balanced against Duchenne progression and limited treatment options. Risk tolerance increased at later stages. Participants perceived a 'right time' to initiate gene therapy. Most preferred to wait until a highly-valued function was about to be lost.ConclusionParticipants demonstrated a complex weighing of potential benefits against harms and the inevitable decline of untreated Duchenne. Disease progression increased risk tolerance as participants perceived fewer treatment options and placed greater value on maintaining remaining function. In the context of a one-time treatment like gene therapy, our finding that preferences about timing of initiation are influenced by disease state suggest the importance of assessing 'lifetime' preferences across the full spectrum of disease progression