scholarly journals Perceptions of molecular epidemiology studies of HIV among stakeholders

2017 ◽  
Vol 6 (3) ◽  
Author(s):  
Cynthia Schairer ◽  
Sanjay R. Mehta ◽  
Staal A. Vinterbo ◽  
Martin Hoenigl ◽  
Michael Kalichman ◽  
...  
Keyword(s):  
Molecular Epidemiology ◽  
Qualitative Interviews ◽  
Public Health Research ◽  
Hiv Care ◽  
Willingness To Participate ◽  
Research Subjects ◽  
Privacy Breaches ◽  
Epidemiology Studies ◽  
Study Participants ◽  
Design And Methods

Background: Advances in viral sequence analysis make it possible to track the spread of infectious pathogens, such as HIV, within a population. When used to study HIV, these analyses (i.e., molecular epidemiology) potentially allow inference of the identity of individual research subjects. Current privacy standards are likely insufficient for this type of public health research. To address this challenge, it will be important to understand how stakeholders feel about the benefits and risks of such research. Design and Methods: To better understand perceived benefits and risks of these research methods, in-depth qualitative interviews were conducted with HIV-infected individuals, individuals at high-risk for contracting HIV, and professionals in HIV care and prevention. To gather additional perspectives, attendees to a public lecture on molecular epidemiology were asked to complete an informal questionnaire. Results: Among those interviewed and polled, there was near unanimous support for using molecular epidemiology to study HIV. Questionnaires showed strong agreement about benefits of molecular epidemiology, but diverse attitudes regarding risks. Interviewees acknowledged several risks, including privacy breaches and provocation of anti-gay sentiment. The interviews also demonstrated a possibility that misunderstandings about molecular epidemiology may affect how risks and benefits are evaluated. Conclusions: While nearly all study participants agree that the benefits of HIV molecular epidemiology outweigh the risks, concerns about privacy must be addressed to ensure continued trust in research institutions and willingness to participate in research.

Intersectional Stigma Among People Transitioning From Incarceration to Community-Based HIV Care in Gauteng Province, South Africa

2021 ◽  
Vol 33 (3) ◽  
pp. 202-215
Author(s):  
Daniel M. Woznica ◽  
Nasiphi Ntombela ◽  
Christopher J. Hoffmann ◽  
Tonderai Mabuto ◽  
Michelle R. Kaufman ◽  
...  
Keyword(s):  
South Africa ◽  
Qualitative Interviews ◽  
Hiv Stigma ◽  
Hiv Care ◽  
Gauteng Province ◽  
Community Based ◽  
Care Experience ◽  
Social Inequities ◽  
Care Outcomes ◽  
Study Participants

People transitioning from incarceration to community-based HIV care experience HIV stigma, incarceration stigma, and the convergence of these stigmas with social inequities. The objective of this study is to understand intersectional stigma among people returning from incarceration with HIV in Gauteng Province, South Africa. Qualitative interviews were conducted with 42 study participants. We analyzed transcript segments and memos from these interviews. Our results showed that anticipated HIV stigma increased participants' difficulty with disclosure and treatment collection. Incarceration stigma, particularly the mark of a criminal record, decreased socioeconomic stability in ways that negatively affected medication adherence. These stigmas converged with stereotypes that individuals were inherently criminal “bandits.” Male participants expressed concerns that disclosing their HIV status would lead others to assume they had engaged in sexual activity with men while incarcerated. AIDS education and prevention efforts will require multilevel stigma interventions to improve HIV care outcomes.

scholarly journals Life Quality and Participation of Disabled Children and Young People: Design and Methods of a Transformative Study

2021 ◽  
Vol 20 ◽  
pp. 160940692110167
Author(s):  
Snæfrídur Thóra Egilson ◽  
Linda B. Ólafsdóttir ◽  
Anna Sigrún Ingimarsdóttir ◽  
Freyja Haraldsdóttir ◽  
Ásta Jóhannsdóttir ◽  
...  
Keyword(s):  
Life Quality ◽  
Social Contexts ◽  
Lessons Learned ◽  
Control Group ◽  
Childhood Disability ◽  
Disabled Children ◽  
Sequential Mixed Methods ◽  
Study Participants ◽  
Design And Methods

The LIFE-DCY research project has two aims. First, to evaluate disabled children’s quality of life (QoL) as reported by themselves and their parents, and second, to locate commonalities, differences, and conflicting issues in the processes that may influence disabled children’s life quality and participation. This paper describes the study design, methodology, and methods along with lessons learned. In addition various methodological and ethical concerns are raised. A sequential mixed-methods design was applied. In Phase one (mapping) we used KIDSCREEN-27 to study how disabled children evaluate their QoL compared with the perspectives of their parents and those of non-disabled children and their parents. Using the Participation and environment measure we also studied parents’ perspectives of their children’s participation in different social contexts. Altogether 209 disabled children and their parents, and 335 children in a control group and their parents (paired reports) participated in phase one. Phase two (unpacking) consisted of 14 case studies with disabled children aged 8–18 years and focus groups with 21 disabled people aged 19–35 years. The initial analysis was inductive and data-oriented. We then used critical and transformative lenses to shed light on how meaning was made of life quality and participation in relation to the context in which study participants found themselves. The LIFE-DCY research promotes an understanding of how important aspects of life quality and participation may intersect within different contexts and at different times. The theoretical understandings from this study may also help unpack various aspects of childhood disability in terms of knowledge and power and enhance understandings of how ideas about normality and childhood disability are constructed.

scholarly journals 32P-Post-labelling method improvements for aromatic compound-related molecular epidemiology studies

Mutagenesis ◽  
2007 ◽  
Vol 22 (6) ◽  
pp. 381-385 ◽  
Author(s):  
A. Munnia ◽  
F. Saletta ◽  
A. Allione ◽  
S. Piro ◽  
M. Confortini ◽  
...  
Keyword(s):  
Molecular Epidemiology ◽  
Aromatic Compound ◽  
Epidemiology Studies ◽  
Labelling Method

Combining CGM and an Online Peer Support Community for Hispanic Adults with T2D: A Feasibility Study

2021 ◽  
pp. 193229682110322
Author(s):  
Michelle L. Litchman ◽  
Ashley Ng ◽  
Ana Sanchez-Birkhead ◽  
Nancy A. Allen ◽  
Bruno Rodriguez-Gonzales ◽  
...  
Keyword(s):  
Peer Support ◽  
Feasibility Study ◽  
Self Efficacy ◽  
Diabetes Management ◽  
Qualitative Interviews ◽  
Glucose Monitoring ◽  
Participant Satisfaction ◽  
Hispanic Community ◽  
Clinical Measures ◽  
Study Participants

Background: Previous research has identified that people with type 2 diabetes (T2D) within the Hispanic community would benefit from an online peer support community (OPSC) and continuous glucose monitoring (CGM) data to facilitate diabetes self-management. Methods: A mixed-methods feasibility study enrolled Hispanic, Spanish-speaking adults with T2D, not on insulin. Participants were provided with CGM and access to an OPSC for 12 weeks. Feasibility was assessed by number of eligible participants who enrolled, attrition, quantity of CGM data, validated clinical measures of self-efficacy, quality of life and adverse events. Engagement in the OPSC was measured using objective metrics on the online platform. Qualitative interviews were conducted upon conclusion of the intervention to assess feasibility, acceptability, participant satisfaction, and key recommendations for improvement. Results: Of 46 participants screened, 39 were eligible and 26 completed the study. Participants significantly improved self-efficacy scores. Posts in the OPSC related to goal setting had the highest engagement followed by mid-week and end of week check-in posts respectively. Participant interviews described challenges accessing the OPSC platform as a barrier to engagement. Despite this, all participants were satisfied with the intervention. Key recommendations for improvement included providing greater variety of and individualized education and the use of a peer support platform that is easily accessible. Conclusions: The CGM + OPSC intervention tailored to the Hispanic community with T2D was feasible, acceptable and satisfactory and improved participant self-efficacy for diabetes management which may lead to improved clinical outcomes.

scholarly journals Increasing HIV Subtype Diversity and Its Clinical Implications in a Sentinel North American Population

2013 ◽  
Vol 24 (2) ◽  
pp. 69-73 ◽  
Author(s):  
Reed AC Siemieniuk ◽  
Brenda Beckthold ◽  
M John Gill
Keyword(s):  
Public Health Research ◽  
Hiv Care ◽  
North American Population ◽  
Subtype B ◽  
Southern Alberta ◽  
B Virus ◽  
Clinical Consequences ◽  
Proportional Increase ◽  
Dramatic Shift ◽  
Developed World

BACKGROUND: HIV-1 is a highly diverse virus; subtypes may exhibit differences in rates of transmission, disease progression, neurotoxicity, antiretroviral treatment failure profiles and accuracy of viral load measurements. To date, the HIV epidemic in Canada and the rest of the developed world has been largely due to subtype B; however, shifts in subtype epidemiology could have significant implications.OBJECTIVE: To determine whether there has been an increase in HIV subtype diversity in southern Alberta, Canada.METHODS: All 2358 patients receiving any HIV care between December 31, 2001 and December 31, 2010 were included in a retrospective analysis of subtype prevalence and incidence. In an indexed analysis, subtype trends from 1994 to 2010 were also evaluated.RESULTS: Between 2001 and 2010, the prevalence of non-B HIV subtypes in patients with a known subtype increased from 7% to 24%. In 2010, the most prevalent non-B subtypes were C (65%), A (11%), CRF02_AG (9.7%), CRF01_AE (4.9%), D (3.9%), G (2.9%) and CRF06_cpx (1.5%). In the indexed analysis, there was an overall proportional increase in non-B subtypes of 2.3% per year. The year-over-year increase in the prevalence of patients infected with a nonsubtype B virus increased from 13% from 1995 to 2002 to 27% from 2003 to 2010 (P=0.01). Incident non-B subtype cases increased from 9.6% to 32.4% over these time periods.CONCLUSIONS: This recent and dramatic shift in HIV strain diversity in Canada is unprecedented and may have important public health, research and clinical consequences.

scholarly journals Use of short tandem repeat fingerprinting to validate sample origins in hepatitis C virus molecular epidemiology studies

2014 ◽  
Vol 95 (1) ◽  
pp. 66-70 ◽  
Author(s):  
Victoria C. Edwards ◽  
C. Patrick McClure ◽  
Richard J. P. Brown ◽  
Emma Thompson ◽  
William L. Irving ◽  
...  
Keyword(s):  
Hepatitis C Virus ◽  
Hepatitis C ◽  
Sequence Analysis ◽  
Molecular Epidemiology ◽  
Alternative Explanation ◽  
Sequence Analyses ◽  
Distinct Virus ◽  
Virus Sequence ◽  
Epidemiology Studies ◽  
Short Tandem

Sequence analysis is used to define the molecular epidemiology and evolution of the hepatitis C virus. Whilst most studies have shown that individual patients harbour viruses that are derived from a limited number of highly related strains, some recent reports have shown that some patients can be co-infected with very distinct variants whose frequency can fluctuate greatly. Whilst co-infection with highly divergent strains is possible, an alternative explanation is that such data represent contamination or sample mix-up. In this study, we have shown that DNA fingerprinting techniques can accurately assess sample provenance and differentiate between samples that are truly exhibiting mixed infection from those that harbour distinct virus populations due to sample mix-up. We have argued that this approach should be adopted routinely in virus sequence analyses to validate sample provenance.

scholarly journals Can social support work virtually? Evaluation of rheumatoid arthritis patients’ experiences with an interactive online tool

2015 ◽  
Vol 20 (4) ◽  
pp. 199-209 ◽  
Author(s):  
Zlatina Kostova ◽  
Maria Caiata-Zufferey ◽  
Peter J Schulz
Keyword(s):  
Rheumatoid Arthritis ◽  
Social Support ◽  
Positive Impact ◽  
Qualitative Interviews ◽  
General Purpose ◽  
Individual Characteristics ◽  
Willingness To Participate ◽  
Chronic Patients ◽  
Support Tool ◽  
Psychological Suffering

BACKGROUND: There is strong empirical evidence that the support that chronic patients receive from their environment is fundamental for the way they cope with physical and psychological suffering. Nevertheless, in the case of rheumatoid arthritis (RA), providing the appropriate social support is still a challenge, and such support has often proven to be elusive and unreliable in helping patients to manage the disease.OBJECTIVES: To explore whether and how social support for RA patients can be provided online, and to assess the conditions under which such support is effective. An online support tool was designed to provide patients with both tailored information and opportunities to interact online with health professionals and fellow sufferers. The general purpose was to identify where the support provided did – or did not – help patients, and to judge whether the determinants of success lay more within patients – their engagement and willingness to participate – or within the design of the website itself.METHODS: The present study reports qualitative interviews with 19 users of the tool. A more specific purpose was to elaborate qualitatively on results from a quantitative survey of users, which indicated that any positive impact was confined to practical matters of pain management rather than extending to more fundamental psychological outcomes such as acceptance.RESULTS AND CONCLUSIONS: Overall, online learning and interaction can do much to help patients with the everyday stresses of their disease; however, its potential for more durable positive impact depends on various individual characteristics such as personality traits, existing social networks, and the severity and longevity of the disease.

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