ABSTRACT
BACKGROUND: Experiential knowledge can aid in designing research by highlighting what an idea looks like from a patient and carer perspective. Experiential knowledge can be emotional, and this can create challenges at formal research meetings. OBJECTIVE: The aim of this study was to consider the role of emotions in public involvement. METHODS: This is a conceptual review informed by relevant literature and reflection within the author team. A structured Scopus search was conducted in November 2021 and December 2022, identifying 18 articles that presented findings from patient and public involvement (PPI) research related to 'emotion'. We complemented the search with theory-generating articles related to the role of emotion and emotional labour in human life. FINDINGS: Study findings from the structured search were tabulated to identify recurring themes; these were as follows: emotional connections to the research topic can cause stressful as well as cathartic experiences of PPI, 'emotional work' is part of PPI when people are contributing with their experiential knowledge and the emotional aspect of 'lived experience' needs to be recognised in how PPI is planned and facilitated. These points were considered in relation to theoretical works and experiences within the author team. DISCUSSION: 'Emotion work' is often required of public collaborators when they contribute to research. They are asked to contribute to research alongside researchers, with knowledge that often contains emotions or feelings. This can be both upsetting and cathartic, and the environment of the research study can make the experience worse or better. CONCLUSIONS: The emotional component of experiential knowledge can be challenging to those invited to share this knowledge. It is imperative that researchers, research institutions and health and care professionals adjust research meeting spaces to show an awareness of the emotional labour that is involved in PPI. PATIENT OR PUBLIC CONTRIBUTION: This review was initiated after a meeting between carers and family members of residents in care homes and researchers. The review is co-written by a group of three researchers and three carers and family members. Regular online meetings were held during the draft stages to incorporate people's views and ideas. Data extracted from the review were presented to the group of public collaborators in a variety of formats (e.g., posters, slideshows, text and verbally) to facilitate shared sense-making and synthesis of the literature.
Subject(s)
Cathartics , Emotions , Humans , Family , Knowledge , Patient ParticipationABSTRACT
PURPOSE: This report describes the development and dissemination of a library of English measures, with Spanish translations, on constructs relevant to social determinants of health and behavioral health outcomes. The El Centro Measures Library is a product of the Center of Excellence for Health Disparities Research: El Centro, a program funded by the National Institute on Minority Health and Health Disparities of the U.S. National Institutes of Health. The library is aimed at enhancing capacity for minority health and health disparities research, particularly for Hispanics living in the United States and abroad. DESIGN: The open-access library of measures (available through www.miami.edu/sonhs/measureslibrary) contains brief descriptions of each measure, scoring information (where available), links to related peer-reviewed articles, and measure items in both languages. Links to measure websites where commercially available measures can be purchased are included, as is contact information for measures that require author permission. Links to several other measures libraries are hosted on the library website. Other researchers may contribute to the library. METHODS: El Centro investigators began the library by electing to use a common set of measures across studies to assess demographic information, culture-related variables, proximal outcomes of interest, and major outcomes. The collection was expanded to include other health disparity research studies. In 2012, a formal process was developed to organize, expand, and centralize the library in preparation for a gradual process of dissemination to the national and international community of researchers. FINDINGS: The library currently contains 61 measures encompassing 12 categories of constructs. Thus far, the library has been accessed 8,883 times (unique page views as generated by Google Analytics), and responses from constituencies of users and measure authors have been favorable. CLINICAL RELEVANCE: With the paucity of availability and accessibility of translated measures, behavioral nursing research focused on reducing health disparities can benefit from repositories of research instruments such as the El Centro Measures Library.
Subject(s)
Health Status Disparities , Libraries/organization & administration , Hispanic or Latino , Humans , Minority Health , Social Determinants of Health/ethnology , Translations , United StatesABSTRACT
PURPOSE: To evaluate the safety of the Fecal Microbial Transplant for Sjogren Syndrome (FMT) trial in individuals with immune-mediated dry eye (DE). DESIGN: Open-label, nonrandomized clinical trial. METHODS: The study population included 10 individuals with DE symptoms and signs meeting criteria for Sjögren or positive early Sjögren markers. Procedures were 2 FMTs from a single healthy donor delivered via enema, 1 week apart. The primary outcome measure was safety. In addition, gut microbiome profiles, DE metrics, and T-cell profiles in blood were examined at baseline before FMT, and at 1 week, 1 month, and 3 months after FMT. RESULTS: The mean age of the population was 60.4 years; 30% were male; 50% were white; and 50% were Hispanic. At baseline, all subjects had significantly different gut microbiome profiles from the donor, including higher mean diversity indices. Subjects had a decreased abundance of genera Faecalibacterium, Prevotella, and Ruminococcus and an increased abundance of genera Alistipes, Streptococcus, and Blautia compared to the donor. Effector and regulatory T-cell profiles were positively correlated with each other and with DE symptom severity (T helper 1 cells [Th1]; r = .76; P = .01; Th17: r = 0.83; P = .003; CD25: r = 0.66; P = .04; FoxP3: r = 0.68; P = .03). No adverse events were noted with FMT. After FMT, gut microbiome profiles in 8 subjects moved closer to the donor's profile. As a group, gut microbiome profiles at all follow-up time points were more similar to the original recipients' than the donor's microbiome; however, certain phyla, classes, and genera operational taxonomic unit (OTU) numbers remained closer to the donor vs recipients' baseline profiles out to 3 months. Five individuals subjectively reported improved dry eye symptoms 3 months after FMT. CONCLUSIONS: FMT was safely performed in individuals with immune-mediated DE, with certain bacterial profiles resembling the donor out to 3 months after FMT. One-half the subjects reported improved DE symptoms. The most effective FMT administration method has yet to be determined.
Subject(s)
Dry Eye Syndromes , Gastrointestinal Microbiome , Microbiota , Dry Eye Syndromes/therapy , Fecal Microbiota Transplantation , Feces , Humans , Male , Middle Aged , Treatment OutcomeABSTRACT
Throughout U.S. history, women have changed their sexual behaviors in response to, or as actors affecting, economic, political, and legal imperatives; to preserve health; to promote new relationship, identity or career paths; to assert a set of values; as a result of new reproductive technologies; or to gain status. In adjusting to pressures or goals, women have not always acted, or been able to act, in the interests of their own health, identity, or status. As this article will demonstrate, women, in the short or long run, may attempt to preserve status at the cost of other values such as health. This may occur through conscious and critical choice or through less conscious processes in reaction to relatively larger forces whose impact has not been critically analyzed. With the awareness in the 1980s in the United States of an emergent and incurable sexually transmissible infection, HIV, it would have been anticipated that a new sexual caution may have appeared. Yet, across several research projects in the late 1990s and into the 21st century, as our research team interviewed youth in a high HIV seroprevalence neighborhood in New York City about HIV prevention, we began to hear that a substantial minority of young women and men were participating in social settings for sexual behavior that (1) put youth at risk for HIV; (2) appeared to be motivated by acquisition of status ("props," "points"); and (3) offered few ways for women to win in these status games. We estimate from one random dwelling unit sample that about one in eight youth have been present in these settings and half of them have participated in risky sexual behavior in such settings. The settings are often characterized by men's publicly offhand attitudes toward sexual encounters, are organized around men's status maintenance, and evidence peer pressures that are poorly understood by both young men and women participants. To regain status, some women participants have adopted attitudes more characteristic of men.
Subject(s)
Adolescent Behavior/psychology , Health Knowledge, Attitudes, Practice , Interpersonal Relations , Sexual Behavior/psychology , Spouse Abuse/psychology , Women's Health , Adolescent , Female , Humans , Research Design , Risk-Taking , Sexual Behavior/statistics & numerical data , Sexual Partners , Sexually Transmitted Diseases/prevention & control , Socioeconomic Factors , Spouse Abuse/prevention & control , Stereotyping , United States , Urban PopulationABSTRACT
In 2012, Texas experienced the largest outbreak of human West Nile encephalitis (WNE) since the introduction of West Nile virus (WNV) in 2002. Despite the large number of WNV infections, data indicated the rate of reported WNE among human cases was no higher than in previous years. To determine whether the increase in WNV human cases could have been caused by viral genetic changes, the complete genomes of 17 isolates made from mosquito pools in Dallas and Montgomery Counties in 2012 were sequenced. The 2012 Texas isolates were found to be composed of two distinct clades, both circulating in Dallas and Montgomery Counties despite a 5-fold higher disease incidence in the former. Although minor genetic differences existed between Dallas and Montgomery WNV populations, there was weak support for population subdivision or adaptive changes. On the basis of these data, alternative explanations for increased WNV disease incidence in 2012 are proposed.
Subject(s)
Disease Outbreaks/statistics & numerical data , West Nile Fever/epidemiology , West Nile Fever/virology , West Nile virus/genetics , Base Sequence , Genetic Variation , Genotype , Humans , Incidence , Likelihood Functions , Mutation , Phylogeny , RNA, Viral/genetics , Sequence Alignment , Sequence Analysis , Texas/epidemiology , West Nile virus/classificationABSTRACT
The synthesis, spectroscopic and structural characterization of the aryloxy and amino functionalized chloroboryl complexes (eta(5)-C(5)R(5))Fe(CO)(2)B(OMes)Cl (R = H, 2a ; R = Me, 3a) and (eta(5)-C(5)H(5))Fe(CO)(2)B(N(i)Pr(2))Cl (7a) are reported. Compound 2ais shown to be a versatile substrate for further boron-centred substitution chemistry leading to the asymmetric boryl complexes (eta(5)-C(5)H(5))Fe(CO)(2)B(OMes)ER(n) [ER(n) = OC(6)H(4)(t)Bu-4, 2c; ER(n) = SPh, 2d] with retention of the metal-boron bond. The reactivities of 2a, 3a and 7a towards the halide abstraction agent Na[BAr(f)(4)] have also been examined, in order to investigate the potential for the generation of cationic heteroatom-stabilized terminal borylene complexes. The application of this methodology to the mesityloxy derivatives and gives rise to B-F containing products, presumably via fluoride abstraction from the [BAr(f)(4)](-) counter-ion. By contrast, amino-functionalized complex 7a is more amenable to this approach, and the thermally robust terminal aminoborylene complex [(eta(5)-C(5)H(5))Fe(CO)(2)B(N(i)Pr(2))][BAr(f)(4)] (9) can be isolated in ca. 50% yield. The reactivity of 9towards a range of nucleophilic and/or unsaturated reagents has been examined, with examples of addition, protonolysis and metathesis chemistries having been established.
ABSTRACT
OBJECTIVE: HIV-related stigma affects not only persons living with HIV (PLwHIV) but also their communities and families including children. This study aimed to determine whether an interactive training administered to community parents significantly increases their children's reported comfort interacting with PLwHIV. METHODS: A randomized clinical trial with random-quota dwelling unit sampling and a random invitation to treatment had 238 parent and 238 child participants. RESULTS: For children of trained parents, significant increases in comfort were obtained, baseline to 6-month follow-up, on 14 of 22 reported daily activities with PLwHIV. For children who recently interacted with a person living with HIV, this comfort predicted the number of recent activities, even after controlling for closeness to the person living with HIV and for the number of persons with HIV known, living or deceased. CONCLUSIONS: Training parents to be HIV health educators of their children significantly impacts youth and shows promise for reducing HIV-related stigma and social isolation.