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Coming from two different worlds-A qualitative, exploratory study of the collaboration between patient representatives and researchers.

ABSTRACT: BACKGROUND:Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective. OBJECTIVE:By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group. DESIGN:We apply a qualitative design using positioning theory as a theoretical framework. SETTING AND PARTICIPANTS:Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis. FINDINGS:The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs. DISCUSSION AND CONCLUSION:Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research.

SUBMITTER: Stuhlfauth S

PROVIDER: S-EPMC6543145 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Coming from two different worlds-A qualitative, exploratory study of the collaboration between patient representatives and researchers.

Stuhlfauth Susanne S Knutsen Ingrid Ruud IR Foss Christina C

Health expectations : an international journal of public participation in health care and health policy 20190218 3

<h4>Background</h4>Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective.<h4>Objective</h4>By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group.<h4>Design</h4>We apply ...[more]

PMID: 30779324

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Project description:BACKGROUND:Species of the genus Halomonas are salt-tolerant organisms that have a versatile metabolism and can degrade a variety of xenobiotic compounds, utilizing them as their sole carbon source. In this study, we examined the genome of a Halomonas isolate from a hydrocarbon-contaminated site to search for chemosensory genes that might be responsible for the observed chemotactic behavior of this organism as well as for other responses to environmental cues. RESULTS:Using genome-wide comparative tools, our isolate was identified as a strain of Halomonas titanicae (strain KHS3), together with two other Halomonas strains with available genomes that had not been previously identified at a species level. The search for the main components of chemosensory pathways resulted in the identification of two clusters of chemosensory genes and a total of twenty-five chemoreceptor genes. One of the gene clusters is very similar to the che cluster from Escherichia coli and, presumably, it is responsible for the chemotactic behavior towards a variety of compounds. This gene cluster is present in 47 out of 56 analyzed Halomonas strains with available genomes. A second che-like cluster includes a gene coding for a diguanylate cyclase with a phosphotransfer and two receiver domains, as well as a gene coding for a chemoreceptor with a longer cytoplasmic domain than the other twenty-four. This seemingly independent pathway resembles the wsp pathway from Pseudomonas aeruginosa although it also presents several differences in gene order and domain composition. This second chemosensory gene cluster is only present in a sub-group within the genus Halomonas. Moreover, remarkably similar gene clusters are also found in some orders of Proteobacteria phylogenetically more distant from the Oceanospirillales, suggesting the occurrence of lateral transfer events. CONCLUSIONS:Chemosensory pathways were investigated within the genus Halomonas. A canonical chemotaxis pathway, controlled by a variable number of chemoreceptors, is widespread among Halomonas species. A second chemosensory pathway of unique organization that involves some type of c-di-GMP signaling was found to be present only in one branch of the genus, as well as in other proteobacterial lineages.

Project description:BackgroundIncreased empathy may improve patient perceptions and outcomes. No training tool has been derived to teach empathy to emergency care providers. Accordingly, we engaged patients to assist in creating a concept map to teach empathy to emergency care providers.MethodsWe recruited patients, patient caretakers and patient advocates with emergency department experience to participate in three separate focus groups (n = 18 participants). Facilitators guided discussion about behaviors that physicians should demonstrate to rapidly create trust; enhance patient perception that the physician understood the patient's point of view, needs, concerns, and fears; and optimize patient/caregiver understanding of their experience. Verbatim transcripts from the three focus groups were read by the authors, and by consensus, five major themes with 10 minor themes were identified. After creating a codebook with thematic definitions, one author reviewed all transcripts to a library of verbatim excerpts coded by theme. To test for inter-rater reliability, two other authors similarly coded a random sample of 40% of the transcripts. Authors independently chose excerpts that represented consensus and strong emotional responses from participants.ResultsApproximately 90% of opinions and preferences fell within 15 themes, with five central themes: provider transparency, acknowledgment of patient's emotions, provider disposition, trust in physician, and listening. Participants also highlighted the need for authenticity, context, and individuality to enhance empathic communication. For empathy map content, patients offered example behaviors that promote perceptions of physician warmth, respect, physical touch, knowledge of medical history, explanation of tests, transparency, and treating patients as partners. The resulting concept map was named the "Empathy Circle."ConclusionsFocus group participants emphasized themes and tangible behaviors to improve empathy in emergency care. These were incorporated into the Empathy Circle, a novel concept map that can serve as the framework to teach empathy to emergency care providers.

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Coming from two different worlds-A qualitative, exploratory study of the collaboration between patient representatives and researchers.

Publications

Coming from two different worlds-A qualitative, exploratory study of the collaboration between patient representatives and researchers.

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