Ethical and practical considerations for HIV cure-related research at the end-of-life: a qualitative interview and focus group study in the United States

Background One of the next frontiers in HIV research is focused on finding a cure. A new priority includes people with HIV (PWH) with non-AIDS terminal illnesses who are willing to donate their bodies at the end-of-life (EOL) to advance the search towards an HIV cure. We endeavored to understand perceptions of this research and to identify ethical and practical considerations relevant to implementing it. Methods We conducted 20 in-depth interviews and 3 virtual focus groups among four types of key stakeholders in the United States (PWH, biomedical HIV cure researchers, HIV clinicians, and bioethicists) to obtain triangulated viewpoints because little was known about the ethics of this topic. Each group was queried as to ethical considerations, safeguards, and protections for conducting HIV cure-related research at the EOL to ensure this research remains acceptable. Results All four key stakeholder groups generally supported HIV cure-related research conducted at the EOL because of the history of altruism within the PWH community and the potential for substantial scientific knowledge to be gained. Our informants expressed that: (1) Strong stakeholder and community involvement are integral to the ethical and effective implementation, as well as the social acceptability of this research; (2) PWH approaching the EOL should not inherently be considered a vulnerable class and their autonomy must be respected when choosing to participate in HIV cure-related research at the EOL; (3) Greater diversity among study participants, as well as multi-disciplinary research teams, is necessitated by HIV cure-related research at the EOL; (4) The sensitive nature of this research warrants robust oversight to ensure a favorable risk/benefit balance and to minimize the possibility of therapeutic misconception or undue influence; and (5) Research protocols should remain flexible to accommodate participants’ comfort and needs at the EOL. Conclusion Because of the ethical issues presented by HIV cure-related research at the EOL, robust ethical safeguards are of utmost importance. The proposed ethical and practical considerations presented herein is a first step in determining the best way to maximize this research’s impact and social value. More much inquiry will need to be directed towards understanding context-specific and cultural considerations for implementing EOL HIV cure research in diverse settings.

Healthcare professionals’ experience of using in situ simulation training in preparation for the COVID-19 pandemic: a qualitative focus group study from a Danish hospital

ObjectivesThe COVID-19 pandemic forced hospital organisation and healthcare professionals to prepare for large quantities of patients in isolation rooms. In situ simulation may seem promising in order to manage the organisational changes that the pandemic require. This study aims to investigate in situ simulations influence on healthcare professional’s self-perceived preparedness to face the pandemic.DesignA qualitative focus group study.SettingWe conducted full scale in situ simulations over a 3-week period in April 2020, including 277 healthcare professionals, at a Danish University Hospital. Subsequently, six semistructured focus group interviews, including 22 participants from the simulations, were conducted in May 2020.Participants22 healthcare professionals participated in the focus group interviews.MethodsThe simulations consisted of a briefing, two scenarios focusing on acute respiratory insufficiency and correct use of personal protective equipment (PPE), and a debriefing. We conducted six focus group interviews using comparable semistructured interview guides focusing on the organisational restructuring of the departments and outcomes of the needs-driven simulation-based programme. We used thematic analysis to identify main themes.ResultsThe informants perceived that the simulations resulted in positive experiences for the healthcare professionals and perceived the organisational changes as effective. They highlighted that simulation enhanced teamwork, demystified the COVID-19 disease, and improved skills, in correct use of PPE and acute treatment of COVID-19 patients. Data revealed that a predefined simulation task force including both experienced simulators and medical experts for facilitation of in situ simulation would be beneficial.ConclusionIn situ simulation may be useful to enhance learning on organisation and individual level during a pandemic. This educational activity could serve an important role in facilitating hospital preparation and education of large numbers of healthcare professionals during a healthcare crisis. Introduction of a simulation task force is suggested to handle coordination and rapid enrolment across the hospital.

An analytic network process model for hospital facilities management performance evaluation

Purpose This study aims to establish a rigorous model that can pragmatically evaluate the facilities management (FM) performance of hospitals. Design/methodology/approach Among the applicable performance indicators that were identified from extant literature, a focus group study shortlisted ten key performance indicators (KPIs) in four categories (safety, physical, financial and environmental) and verified their practicality. Using the analytic network process (ANP) method to process the focus group’s responses yielded importance weightings for the KPIs and developed the intended evaluation model. This model was then validated by a case study. Findings From the empirical data collected, two types of FM performance data and two scenarios of KPI scores were identified. To process these data and scores, a robust calculation method was devised and then proved useful in obtaining an overall score for holistic hospital FM performance. The case study confirmed the appropriateness and validity of the model developed. Research limitations/implications Through illustrating how the ANP method could be applied to develop an FM performance evaluation model, the study contributes knowledge to the multi-criteria decision-making domain. Despite the geographical limitation of the model established (i.e. centered around a group of hospitals investigated in Hong Kong), the study can serve as a reference for developing performance evaluation models for other buildings or infrastructures globally. Practical implications The model constitutes a practical tool for evaluating the FM performance of hospitals. Using this model on a regular basis will enable performance benchmarking and hence, continuous improvement of FM services. Originality/value The ANP model established is the first of its kind tailored for evaluation of hospital FM performance.

Co-designing a Community Pharmacy Pharmacogenomics Testing Service In The UK

Introduction: Pharmacogenomics (PGx) testing services have been delivered through community pharmacies across the globe, though not yet in the UK. This paper is reporting a focus group study, the first stage of a participatory co-design process to increase the chance of a successful implementation of a PGx service through community pharmacy in the UK.Aim: To identify the barriers and enablers to implementing a community pharmacy based PGx service in the UK.Method: Three focus groups were conducted with community pharmacists (n= 10), prescribers (n= 8) and patients (n=8) in England. The focus groups were recorded, transcribed and thematically analysed using the Braun and Clarke six step reflexive thematic analysis approach.Results: The analysis identified five themes about PGx testing in community pharmacies: (1) In- principle receptiveness, (2) Appreciation of the benefits, (3) Lack of implementation resources (4) Ambiguity about implications for implementation and (5) Interprofessional relationship challenges.Conclusion: The identified enablers for implementation of a PGx service were at a macro health system strategic level; the concerns were more at a granular operational procedural level. Overall receptiveness was noted by all three participant groups, and both prescriber and pharmacist groups appreciated the potential benefits for patients and the healthcare system. Prior to implementation in the UK, there is a need to disambiguate health professional’s concerns of the guidance, resources, and knowledge required to set up and deliver the service and to resolve patient concerns about the nature of genomics.

The Social Construction of Congenital Deafblindness in relation to Education: Analysis of focus groups in East and Central Africa

This study investigated the importance of social construction of congenital deafblindness (CDB) when planning special needs education services. The study was conducted in Uganda and the Democratic Republic of the Congo (DRC). The research was based on a literature review and a focus group study. In the focus groups a dialogical perspective was used for acquiring knowledge through communicative interactions. The focus was on two main topics: social construction of Congenital Deafblindness (CDB) and knowledge about education services for people with CDB. Fourteen participants were selected, with seven from each country. Participants were familiar with deafblind persons and/or with communities where they lived. The grounded theory approach and thematic analysis method were used to determine the correct coding and themes and identify patterns of meaning of different opinions. The results of the data analyses showed that participants attributed the causes of CDB in Uganda and the DRC to cultural and religious beliefs. The medical stance on CDB was less understood. In addition, culture and religion were identified as dominant factors in the social construction of the position of people with CDB in the community, leading to misunderstanding and inappropriate services for them. This community misunderstanding indicates that people at the local level are likely to stick to traditional and religious practices. Therefore, changing attitudes and educational opportunities for people with CDB requires more understanding of third-party voices and the underlying barriers in these communities.

Perceptions of Tailored Dietary Advice to Improve the Nutrient Adequacy of the Diet in French Pregnant Women

Tailored dietary counseling could be specifically efficient during pregnancy, a period accompanied by a rise in nutrition awareness, but little is known about the expectations of pregnant women in this regard. We studied these expectations regarding tailored dietary advice in French women during their pregnancy, as well as their motivations and the perceived barriers and enablers. In French pregnant women, we evaluated the perceptions of tailored dietary advice provided by stepwise dietary counseling based on three types of dietary changes, consisting of: (1) a modification of the amounts consumed, (2) substitutions within the food subgroups, and (3) substitutions between food subgroups. A sequential explanatory mixed-method approach was designed. Using qualitative data from a focus group study (n = 40), we intended to explore in depth the women’s expectations regarding dietary advice and adherence to a tailored approach. These were combined with quantitative and qualitative data from a 6-week online longitudinal study (n = 115), using questionnaires designed to assess the modifications of dietary habits during pregnancy and to evaluate each type of dietary change. Both studies confirmed that most women in our samples did indeed intend to institute changes regarding healthier dietary practices during pregnancy. The principal motivation behind changes to their habits was to ensure the health and well-being of both their babies and themselves. The proposal of dietary advice that is tailored to both the current diet and the specific needs of pregnant women, but that is also positive and credible, was perceived as enabling implementing healthier dietary practices during pregnancy. Regarding the implementation of the dietary changes proposed, the enablers and barriers identified differed between modifications of the amounts consumed and substitutions. The women displayed interest in all types of dietary changes. This gave relevance to combining different types of changes in order to propose dietary counseling during pregnancy. Tailored dietary counseling was identified by French pregnant women in our samples as enabling them to adopt a healthier diet. However, perceived barriers might limit the implementation of dietary changes, especially when they involved marked modifications to their usual diet.

“Family Connections”, a DBT-Based Program for Relatives of People with Borderline Personality Disorder during the COVID-19 Pandemic: A Focus Group Study

The COVID-19 pandemic has had a significant impact on the family environment due to the difficulties that have been generated by job losses, deaths, increase rates of family and domestic violence, poor mental health outcomes, and estrangement in personal relationships. “Family Connections” (FC) is an internationally renowned DBT-based program that supports the families and caregivers of people with borderline personality disorder. The study took place at a Specialized Health Centre in Spain. A focus group with seven participants was organized for people who had previously attended an FC group. The participants were asked about their experiences during the confinement periods that was caused by COVID-19 as well as their experiences and opinions on relatives, skills practiced, their need to and the advantages of attending the group, and satisfaction with the FC group. The qualitative research web program Dedoose was used for the thematic analysis of the data. The results showed that the participants experienced various experiences during confinement; validation and radical acceptance were determined to be the most useful skills; the importance of professionals and the content as well as the sincerity of attendees and having a safe space were determined to be the greatest benefits of the programs; and the participants all indicated great satisfaction of the program. This study allowed us to explore the experiences of family members of people with BPD with their loved ones during the confinement period caused by the COVID-19 pandemic. We evaluated the use of the FC program skills in the family environment during confinement, and we analyzed the acceptability and satisfaction with the FC program.

‘Variant fatigue’? Public attitudes to COVID-19 18 months into the pandemic: A qualitative study

Objectives: Qualitative study exploring public attitudes to COVID-19 18 months into the pandemic, specifically focused on adherence to infection-reducing behaviours and policy measures during a period of the emergence of a new variant (Omicron)Study design: Qualitative online focus group study Methods: Focus groups were conducted with a diverse sample of 22 adults in the United Kingdom to explore their views. Data were analysed using a framework approach.Findings: Analysis revealed two main groups based on participants’ perceived concern over Omicron: variant fatigue (n=16 (73%)) and deja vu (n=6 (27%)). Those exhibiting variant fatigue reported not adopting any additional caution or infection-reducing behaviours as a result of the new variant. They tended to describe Omicron as ‘just another variant’ and expressed a need to ‘get on’ and ‘live with’ the virus. Those exhibiting deja vu suggested that Omicron was of additional concern to them and for some posed a threat not seen since ‘last year’ (second wave). No demographic patterns emerged, although there was a high amount of variant fatigue (absence of additional caution) (n=5 (83%)) amongst the unvaccinated participants. Those who were concerned about Omicron tended to report reducing social contacts. Few participants reported taking lateral flow tests regularly, except for those required to by their employers. Stated compliance with facemask rules was high. Nearly all participants stated an intention to comply with any future potential policy measures to reduce transmission of COVID-19, including more stringent measures such as lockdowns. Implications: 18 months into the pandemic, there may be habituation to the risk posed by COVID-19, despite the increased risk posed by the new variant Omicron. Due to this risk habituation (‘variant fatigue’) and due to a general decline in engagement with news related to COVID-19, many people may not be, or might be reluctant to, voluntarily adopt additional caution and infection-reducing behaviours. This poses a challenge for public health communication, since a sense of being ‘relaxed’ about, or ‘living with’ COVID-19 may undermine efforts to encourage voluntary adherence to infection-reducing behaviours. However, findings suggest that most people intend to comply (albeit reluctantly) with policy measures (as opposed to ‘advice’)- including stringent measures such as lockdown - if they were required in future.