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Community engagement (CE) is praised to be a powerful vehicle in empowering communities with knowledge and skills to make informed decisions for better health care. Several CE approaches have been proposed to improve participants’ and research communities’ understanding of genomic research including pharmacogenomic information and results. However, there is limited literature on how these approaches can be used to communicate findings of pharmacogenomic research to communities of people living with HIV. This study explored stakeholders’ perspectives on the role of community engagement in promoting understanding of pharmacogenomic research results among people living with HIV. We adopted a qualitative approach that involved 54 stakeholders between September 2021 and February 2022. We held five focus group discussions among 30 community representatives from five research institutions, 12 key informant interviews among researchers, and 12 in-depth interviews among ethics committee members. A thematic approach was used to analyze the results. Five themes merged from this data and these included (i) benefits of engaging communities prior to returning individual pharmacogenomic research results to participants. (ii) Obtaining community consensus on the kinds of pharmacogenomic results to be returned. (iii) Opinions on how pharmacogenomic research information and results should be communicated at community and individual levels. (iv) Perceived roles of community stakeholders in promoting participants’ understanding and utilization of pharmacogenomic research results. (v) Perceived challenges of engaging communities when returning individual results to research participants. Stakeholders opined that CE facilitates co-learning between researchers and research communities. Researchers can adapt existing CE approaches that are culturally acceptable for meaningful engagement with minimal ethical and social risks when communicating pharmacogenomic research results. CE approaches can facilitate understanding of pharmacogenomic research and findings among research participants and communities. Therefore, if creatively adapted, existing and new CE approaches can enable researchers to communicate simple and understandable results of pharmacogenomic research.

Automated mobile phone surveys (MPS) can be used to collect public health data of various types to inform health policy and programs globally. One challenge in administering MPS is identification of an appropriate and effective participant consent process. This study investigated the impact of different survey consent approaches on participant disposition (response characteristics and understanding of the purpose of the survey) within the context of an MPS that measured noncommunicable disease (NCD) risk factors across Colombia and Uganda. Participants were randomized to one of five consent approaches, with consent modules varying by the consent disclosure and mode of authorization. The control arm consisted of a standard consent disclosure and a combined opt-in/opt-out mode of authorization. The other four arms consist of a modified consent disclosure and one of four different forms of authorization (i.e., opt-in, opt-out, combined opt-in/opt-out, or implied). Data related to respondent disposition and respondent understanding of the survey purpose were analyzed. Among 1889 completed surveys in Colombia, differences in contact, response, refusal, and cooperation rates by study arms were found. About 68% of respondents correctly identified the survey purpose, with no significant difference by study arm. Participants reporting higher levels of education and urban residency were more likely to identify the purpose correctly. Participants were also more likely to accurately identify the survey purpose after completing several survey modules, compared to immediately following the consent disclosure (78.8% vs 54.2% correct, p<0.001). In Uganda, 1890 completed surveys were collected. Though there were differences in contact, refusal, and cooperation rates by study arm, response rates were similar across arms. About 37% of respondents identified the survey purpose correctly, with no difference by arm. Those with higher levels of education and who completed the survey in English were able to more accurately identify the survey purpose. Again, participants were more likely to accurately identify the purpose of the survey after completing several NCD modules, compared to immediately following the consent module (42.0% vs 32.2% correct, p = 0.013). This study contributes to the limited available evidence regarding consent procedures for automated MPS. Future studies should develop and trial additional interventions to enhance consent for automated public health surveys, and measure other dimensions of participant engagement and understanding.

Background Understanding the treatment preferences of terminally ill patients is critical for the provision of quality care at the end of life. However, there is limited literature on the perspectives and willingness to develop advance directives among older persons in low-resource settings. This study explored the perspectives and willingness of older persons to develop an advance directive. Methods This was a qualitative study that involved older persons aged 60 years and over at a national referral hospital in Uganda. Data were collected through in-depth interviews and transcribed verbatim. Thematic analysis was performed, and the findings were reported using themes along with illustrative quotes from the participants. Results The study included 15 participants with an average age of 65.5 years (SD 4.4); most were male (10/15), married (12/15), and unemployed (10/15). Three themes were identified from the data, including: (1) understanding of advance directives, (2) perceptions about advance directives, and (3) willingness to develop advance directives. Most respondents had a limited understanding of advance directives. Advance directives were perceived as a foreign practice that was only applicable to the very sick and terminally ill. However, respondents were willing to develop advance directives for several reasons, including autonomy over one’s health and the need to prevent family suffering and conflict in the event of death. Conclusion The study revealed a general lack of awareness and limited understanding of advance directives. There is a need for public sensitization on the importance of advance directives to healthcare practice and among older persons, given their high risk of morbidity and mortality due to aging. Promoting the use of advance directives in healthcare practice ethically recognizes one’s autonomous rights of self-control.

Introduction The ability of artificial intelligence (AI) to analyze data in real-time and improve patients’ diagnosis has led to a rapid growth of AI- health research in Uganda. Yet, there are no national guidelines on how to conduct AI-research in an ethical manner. Recent studies have reported that ethics committees lack resources, expertise and training to appropriately address the risks that may arise from AI health research. This study aimed to develop a guide for ethical review of the development of AI systems in health research in Uganda. Methods This study employed an exploratory qualitative approach between March – October 2024, involving 35 stakeholders in two public universities in Uganda. In-depth interviews were conducted with twelve members of ethics committees who had ever reviewed AI- protocols, six bioethicists, eight health researchers and nine members of AI-development teams. A thematic approach was used to interpret the results. Results Six themes emerged from this data including promoting social value and equity; ensuring participants and end-user autonomy and safety; addressing data acquisition, access and sharing gaps; ensuring responsible data use and data minimization; promoting responsible AI and fostering collaborative partnerships. Respondents opined that AI holds promise for improving health research. However, its successful implementation demands ethical considerations to minimize harm to participants and end-users. Conclusion Overall, respondents felt that developing a guide for ethics review of AI-research may minimize potential harms that could arise from using AI tools in research. We recommend training of ethics committees on key ethical considerations for development of responsible AI tools.

There is limited literature on the opinions and perspectives of researchers on the ethical issues in biobank research in South Africa. This study aimed to explore researchers' perspectives on informed consent and ethical review of biobank research in South Africa. An online survey was conducted among researchers and scientists at Stellenbosch University and the University of Kwazulu-Natal. The majority of researchers opined that broad consent is appropriate for biobank research. However, there was no consensus on the necessity for re-consent. Researchers were also in agreement that issues concerning informed consent and future use of samples require thorough discussions during the ethical review process. Overall, the attitude of researchers on informed consent and ethical review of biobank research was positive and ethically informed.

This study set out to determine the prevalence of low bone mass following long-term exposure to antiretroviral therapy in Ugandan people living with HIV. A cross-sectional study was conducted among 199 people living with HIV that had been on anti-retroviral therapy for at least 10 years. All participants had dual X-ray absorptiometry to determine their bone mineral density. The data collected included antiretroviral drug history and behavioral risk data Descriptive statistics were used to summarize the data. Inferential statistics were analyzed using multilevel binomial longitudinal Markov chain Monte Carlo mixed multivariate regression modelling using the rstanarm package. One hundred ninety nine adults were enrolled with equal representation of males and females. The mean age was 39.5 (SD 8.5) years. Mean durations on anti-retroviral treatment was 12.1 (SD 1.44) years, CD4 cell count was 563.9 cells/mm3. 178 (89.5%) had viral suppression with <50 viral copies/ml. There were 4 (2.0%) and 36 (18%) participants with low bone mass of the hip and lumbar spine respectively. Each unit increase in body mass index was associated with a significant reduction in the odds for low bone mineral density of the hip and lumbar spine. The duration on and exposure to the various antiretroviral medications had no significant effect on the participant's odds for developing low bone mass. All the coefficients of the variables in a multivariable model for either hip or lumbar spine bone mass were not significant. These results provide additional evidence that patients on long term ART achieve bone mass stabilization. Maintaining adequate body weight is important in maintaining good bone health in people on antiretroviral therapy.

Background Staff in low resourced emergency units of a low-income country face the challenge of obtaining informed consent for incapacitated patients or their next of kin in a time-constrained situation often in an overcrowded environment. Therefore, we aimed to establish the informed consent practices for emergency surgical care among healthcare professional at two emergency surgical units at two tertiary teaching hospitals in Uganda. Methods In October 2022 – February 2023we conducted key informant interviews in Uganda and purposively selected 16 staff in surgical emergency units at two tertiary teaching hospitals and directly observed the informed consent practices. Data was managed and analyzed inductively using NVivo version 12. Results Six themes emerged from key informant interviews including knowledge and perspectives on informed consent; processes, procedures, and practices regarding informed consent; communication strategies for informed consent; ethical considerations; benefits of informed consent during surgery; and challenges to emergency informed consent. Staff had adequate knowledge about informed consent but faced several challenges during the consent process due to lack of guiding institutional policies. Overall, the informed consent process was inadequate at both institutions with greeting of patients, disclosure of risks and assessment of understanding poorly done. Consent was conducted in a noisy environment at both institutions and there was no privacy in the public hospital. Conclusion Although knowledge about consent practices by emergency staff at both institutions was good, in practice there was inadequate disclosure of risks, inadequate knowledge about the surgical procedure, risks, and benefits. Emergency staff identified the need for procedure specific consent documents which capture the information that is given to the patient and guiding policies on consent for incapacitated patients who have no surrogates.

Informed consent for emergency surgery is a process in which a patient or their next of kin must make quick decisions required for surgery in a life-threatening situation or surgery that may have life-altering outcomes. The objective of the study was to describe patients and their next of kin experiences and factors influencing the informed consent process in two urban university teaching hospitals in Uganda. Methods: A cross-sectional survey involving patients who underwent emergency surgery and their next of kin was conducted in two tertiary care hospitals; one public and one private-not-for profit institution. A questionnaire was administered to collect sociodemographic information, type of Surgery that was done, how informed consent was obtained and experiences and expectations from the informed consent process. Univariate and multivariate analyses of the variables was done. Results: We collected data from 210 patients from a public hospital and 170 from a private-not-for profit hospital. Overall, most patients did not have the risks of the surgery communicated to them (79.7%), were not given alternative options (87.6%) and had no opportunity to ask questions (57.4%). Patients at the private institution had 3.35 times the odds of expecting the consent form to be explained to them than those at the public institution. Patients at the public hospital had 0.12 times the odds of preferring to have consent administered by a nurse than patients at the private institution OR 0.12 (0.05–0.29, p < 0.001). Patients in the public institution had 0.18 times the odds of preferring to have consent administered by a doctor than patients in the private institution OR 0.18 (0.08–0.45, p < 0.001). Conclusion: Patients in both public and private institutions are not informed about the risks of surgery, alternative options and are not given the opportunity to ask questions. Interpretation of the findings of this study on patient preferences on who administered consent though statistically significant were inconclusive due to the responses not being mutually exclusive.

Objectives This dataset was generated to investigate the distribution of HLA-A alleles in people living with HIV (PLWH) with and without periodontitis in Uganda. The data were collected as part of the parent study Oral papillomavirus, microbiota and cancer in people living with HIV (OHPVMC). The dataset provides valuable information about host genetic factors that may influence periodontal disease susceptibility in HIV-positive populations. Data description The dataset includes nanopore sequencing data (FASTQ format) for HLA-A alleles obtained from 64 PLWH participants (32 with periodontitis and 32 without). It also contains accompanying clinical metadata including periodontitis severity scores, age, sex, antiretroviral therapy duration, number of drinks per day and number of cigarettes per day. Processed files include HLA-A allele calls in CSV format, and file linking the barcodes to the unique identification numbers. All data files have been deposited in public repositories to facilitate reuse in immunogenetics and oral health research. The raw sequencing data are available through NCBI’s Sequence Read Archive, while processed data and metadata are hosted on Figshare. This dataset will be particularly valuable for researchers studying genetic susceptibility to oral diseases, HLA diversity in African populations, and the application of nanopore sequencing for HLA typing.

While there have been several studies examining the understanding and quality of informed consent in clinical trials of cancer therapies, there is limited empirical research on health practitioners' experiences on the informed consent process in cancer care, especially from low resource settings. This study explored health professionals' perspectives on information disclosure during the consenting process in cancer care. A qualitative descriptive approach was used to collect data. Face to face interviews were conducted with 10 purposively selected healthcare professionals who were actively involved in soliciting informed consent at a cancer treatment centre in Uganda. A thematic approach was used to interpret the results. There were five key themes, and these included information disclosure to patients; assessment of patients' cancer awareness, treatment preferences and expectations; informed consent practices; barriers to optimal informed consent and information disclosure; and recommendations for improving the consenting process. All respondents appreciated the value of disclosing accurate information to patients to facilitate informed decision making. However, the informed consent process was deemed sub-optimal. Respondents asserted that patients should be the psychological wellbeing of patients should be protected by mentally preparing them before disclosing potentially distressing information. All healthcare professionals were appreciative of the central role the family plays in the consenting process. Overall, informed consent practices were not ideal because of the several challenges. Inadequate time is devoted to information disclosure and patient education; there is lack of privacy; and informed consent documentation is poor. There is a need for significant improvement in informed consent practices and healthcare professional-patient communication.