HIV-negative children’s experiences and opinions towards parental HIV disclosure: a qualitative study in China

In HIV/AIDS research, few studies to date have evaluated ways to improve parental HIV disclosure practices using feedback from HIV-negative children who have recently experienced this event. We conducted semi-structured in-depth interviews with 20 children (aged 6–15) who were partially to fully aware of their parents’ HIV status in rural Guangxi, China. Of the 20 children, eight children who were of older age (11.38 years in average) endorsed parental HIV disclosure, five discouraged it and seven expressed uncertainty. Children’s different experiences and attitudes towards disclosure were seen to be associated with their family dynamics (especially the parent–child relationship), social support and care, experiences of stigma and discrimination, psychosocial suffering, comprehension of the disease and the children’s age. Our study contributes to building a child-centered comprehensive understanding for Chinese parental HIV disclosure. It is imperative that counselors and community advocates assess and help parents achieve optimal readiness preceding disclosure of their illness to their HIV-negative children.     

Anonymous or identity-registered sperm donors? A study of Dutch recipients' choices

BACKGROUND: The aim of the present study was to gain insight into parents' own donor preferences within a system offering the choice between an anonymous and identity-registered donor. A comparison was made between recipients choosing for an anonymous donor (AD choosers) and those choosing for an identifiable donor (ID choosers) with regard to their sexual orientation, demographic characteristics, disclosure issues and infertility distress. METHODS: Data from 105 couples (61% heterosexual, 39% lesbian) were registered on a standardized form during implication counselling sessions previous to treatment. RESULTS: Sixty-three per cent of the heterosexual couples and 98% of the lesbian couples had chosen an ID donor. Major differences between ID and AD choosers were identified. Among the ID choosers secrecy towards the child was no option, whereas 83% of the AD choosers did not intend to inform their child. Compared with heterosexual ID choosers, AD choosers were more distressed about their infertility and had a lower educational level. CONCLUSION: Legislation imposing ID donors appears to be acceptable for the majority of this study population. For a vulnerable group of heterosexual couples, who remained secretive about the use of a donor, adaptation to the new system is not self-evident.     

Disclosure,Apology, and Offer Programs: Stakeholders’ Views of Barriers to and Strategies for Broad Implementation

Context: The Disclosure, Apology, and Offer (DA&O) model, a response to patient injuries caused by medical care, is an innovative approach receiving national attention for its early success as an alternative to the existing inherently adversarial, inefficient, and inequitable medical liability system. Examples of DA&O programs, however, are few. Methods: Through key informant interviews, we investigated the potential for more widespread implementation of this model by provider organizations and liability insurers, defining barriers to implementation and strategies for overcoming them. Our study focused on Massachusetts, but we also explored themes that are broadly generalizable to other states. Findings: We found strong support for the DA&O model among key stakeholders, who cited its benefits for both the liability system and patient safety. The respondents did not perceive any insurmountable barriers to broad implementation, and they identified strategies that could be pursued relatively quickly. Such solutions would permit a range of organizations to implement the model without legislative hurdles. Conclusions: Although more data are needed about the outcomes of DA&O programs, the model holds considerable promise for transforming the current approach to medical liability and patient safety.     

Diabetes and Female Sexuality

Although diabetes plays a significant role in causing impotence in the diabetic male, its effects on female sexuality have only recently been studied. Surprisingly, no demonstrable effect on the capacity for sexual arousal or orgasm has been found in the diabetic female. This paper compares male and female anatomy, physiology, and neurology, and speculates about reasons for this sex difference.     

Experiences and psychological distress of fertility treatment and employment

Purpose: This study examined experiences and psychological distress about fertility treatment in people combining work and treatment.

Methods: Five hundred and sixty-three participants in the UK completed an online survey asking about difficulties in combining work and treatment; workplace disclosure, support, absence and policy; and psychological distress about treatment.

Results: Absence from work and perceptions that treatment has an impact on work and career prospects were reported by the majority of participants and this was related to the psychological distress of treatment. Around three quarters of participants disclosed to their employer and colleagues. The key reason for disclosure was needing to ask for absence from work and the main reason for non-disclosure was privacy. Workplace policy relating to managing fertility treatment and support from colleagues and their employer was related to reduced psychological distress but workplace policy was reported by less than one quarter of participants.

Conclusion: Difficulties experienced in combining work and treatment suggest that support is needed. Specific workplace policy, guidance for supervisors and flexibility in fertility clinic times should help support employees during treatment and reduce psychological distress, thereby potentially influencing physical health and treatment outcomes.     

Decisional Control Preferences,Disclosure of Information Preferences,and Satisfaction Among Hispanic Patients With Advanced Cancer

ContextStudies to determine the decisional control preferences (DCPs) in Hispanic patients receiving palliative care are limited.ObjectivesThe aims of this study were to describe DCPs, disclosure of information, and satisfaction with decision making among Hispanics and to determine the degree of concordance between patients' DCPs and their self-reported decisions.MethodsWe surveyed 387 cancer patients referred to outpatient palliative care clinics in Argentina, Chile, Guatemala, and the U.S. DCPs were measured with the Control Preference Scale, disclosure preferences with the Disclosure of Information Preferences questionnaire, and satisfaction with care with the Satisfaction with Decision Scale.ResultsIn this study, 182 patients (47.6%) preferred shared decisional control, 119 (31.2%) preferred active decisional control, and 81 (21.2%) preferred a passive approach. Concerning their diagnosis and prognosis, 345 (92%) patients wanted to know their diagnosis, and 355 (94%) wanted to know their prognosis. Three hundred thirty-seven (87%) patients were satisfied with the decision-making process. DCPs were concordant with the self-reported decision-making process in 264 (69%) patients (weighted kappa = 0.55). Patients' greater satisfaction with the decision-making process was correlated with older age (P ≤ 0.001) and with a preference for enhanced diagnostic disclosure (P ≤ 0.024). Satisfaction did not correlate with concordance in the decision-making process.ConclusionThe vast majority preferred a shared or active decision-making process and wanted information about their diagnosis and prognosis. Older patients and those who wanted to know their diagnosis seemed to be more satisfied with the way treatment decisions were made.     

Improving knowledge and trust in vaccines: A survey-based assessment of the potential of the European Union Clinical Trial Regulation No 536/2014 plain language summary to increase health literacy

The European Clinical Trial Regulation No 536/2014 is the first mandate for a non-technical, publicly disclosed, plain language summary (PLS) of clinical trial results. This easy-to-understand summary has the potential to inform the public about clinical trial results and thereby improve health literacy in vaccines.To investigate the utility of the PLS, we undertook 2 online surveys (July/October 2020) in the United Kingdom, the United States and India. Participants were selected by quota sampling to ensure representation of gender, age and parental status. Those lacking interest in vaccine clinical research were excluded. In survey 1, participants were questioned about their interest in and expectations of vaccine trial results. In survey 2, the perceptions of participants to a range of written communication styles used in publicly available PLSs were evaluated.A total of 66 (13%) and 122 (29%) individuals were excluded solely due to lack of interest in vaccine clinical research in surveys 1 and 2, respectively; 450 respondents (150/country) completed survey 1 and 300 (100/country) completed survey 2. In survey 1, there was a correlation (p < 0.01) between claimed knowledge of and trust in vaccines. Healthcare professionals were the most trusted source for vaccine information, while vaccine companies were ranked relatively low. In survey 2, infographic PLS formats were considered easiest to understand, most engaging and the strongest communicators. Emphasizing the main points of the infographics in the text did not improve comprehension or recall. Most respondents (86%) indicated that they would like to see this type of communication in the future.Overall, this research suggests that the PLS, by optimizing content and format, has a potential to increase health literacy, and thereby, as part of a wider integrated communication strategy, build vaccine knowledge and confidence.