Recognizing and Responding to Ethically Important Moments in Qualitative Research.
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ABSTRACT:
SUBMITTER: Baker L
PROVIDER: S-EPMC5058599 | biostudies-literature | 2016 Oct
REPOSITORIES: biostudies-literature
Publications
Recognizing and Responding to Ethically Important Moments in Qualitative Research.
Baker Lindsay L Phelan Shanon S Snelgrove Ryan R Varpio Lara L Maggi Julie J Ng Stella S
Journal of graduate medical education 20161001 4
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Project description:ObjectiveOne of the most prevalent and disrupting symptoms experienced by cancer patients is chronic cancer-related fatigue (CCRF). A better understanding of the chronic nature of CCRF can provide valuable insights for theory and practice. The purpose of this meta-ethnography was to derive an overarching interpretative narrative on patients' experiences and responses to CCRF.MethodsWe conducted a comprehensive systematic literature search in five databases (05-03-2018). In addition, papers from reference lists were retrieved. Two researchers independently screened the papers for eligibility and appraised quality (CASP-criteria). We followed the seven phases of meta-ethnography to extract, translate, and synthesise first-order constructs (ie, patients' views) and second-order constructs (ie, authors' views) from the selected studies into third-order constructs (ie, new interpretations).ResultsOf the 1178 collected articles, 16 articles were included. Through synthesis, a new figure of six interrelated third-order constructs was developed: (1) embodied experience entails the dominating presence of the body; (2) (mis)recognition includes lack of recognition of CCRF by patients, relatives, and health providers; (3) small horizon describes a resultant narrowed world; (4) role change encompasses adopting other life roles; (5) loss of self refers to the impact on one's identity; and (6) regaining one's footing describes the struggle against CCRF, adaptation to CCRF and finally acceptance of a "new normal with CCRF."ConclusionA new embodiment figure of CCRF with social (eg, (mis)recognition), spatial (eg, small horizon) and temporal dimensions (eg, regaining one's footing) was developed. This figure can help professionals to recognise CCRF, inform patients, and personalise treatment.
| S-EPMC7027742 | biostudies-literature
Project description:Research participants should be drawn as fairly as possible from the potential volunteer population. Underlying personality traits are underexplored as factors influencing research decision-making. Dispositional optimism, known to affect coping, physical health, and psychological well-being, has been minimally studied with respect to research-related attitudes. We conducted an exploratory, online survey with 151 individuals (with self-reported mental illness [n = 50], physical illness [n = 51], or neither [n = 50]) recruited via MTurk. We evaluated associations between dispositional optimism (assessed with the Life Orientation Test-Revised) and general research attitudes, perceived protectiveness of five research safeguards, and willingness to participate in research using safeguards. Strongly optimistic respondents expressed more positive research attitudes and perceived four safeguards as more positively influencing willingness to participate. Optimism was positively associated with expressed willingness to participate in clinical research. Our findings add to a limited literature on the influence of individual traits on ethically salient research perspectives.
| S-EPMC9265192 | biostudies-literature
Project description:BackgroundThe purpose of this study is to highlight the experiences of women who are often hidden in what we know and understand about homelessness, and to make policy and practice recommendations for women-centred services including adaptations to current housing interventions.MethodsThree hundred survey interviews were conducted with people experiencing homelessness in Calgary, Alberta, Canada. The survey instrument measured socio-demographics, adverse childhood experiences, mental and physical health, and perceived accessibility to resources. Eighty-one women participants were identified as a subsample to be examined in greater depth. Descriptive statistics and logistic regressions were calculated to provide insight into women respondents' characteristics and experiences of homelessness and how they differed from men's experiences.ResultsWomen's experiences of homelessness are different from their male counterparts. Women have greater mental health concerns, higher rates of diagnosed mental health issues, suicidal thoughts and attempts, and adverse childhood trauma. The results should not be considered in isolation, as the literature suggests, because they are highly interconnected.ConclusionIn order to ensure that women who are less visible in their experiences of homelessness are able to access appropriate services, it is important that service provision is both gender specific and trauma-informed. Current Housing First interventions should be adapted to ensure women's safety is protected and their unique needs are addressed.
| S-EPMC7099814 | biostudies-literature
Project description:PurposeWhile there are many benefits to radiation oncology services, there can be emotional burdens in the care of patients with advanced cancer. Burnout is a prevalent problem in oncology. Existing literature suggests refocusing attention on providers' sense of purpose to protect against burnout. "Sacred moments" are moments of deep interconnection between people with accompanying spiritual emotions such as awe, joy, and gratitude. These moments naturally occur in health care settings, offering potential benefits to both patient and provider. Little is known about the prevalence and impact of sacred moments among health care workers in a radiation oncology setting.Methods and materialsWe conducted an exploratory qualitative study of 13 semi-structured interviews among physicians, registered nurses, and advanced practice providers of a radiation oncology consult service at a large National Cancer Institute-designated cancer center between March and May 2023. Interviews were recorded, transcribed, and analyzed to identify key themes. Data were systematically coded and analyzed in NVivo software and organized into a codebook organized by domains and themes.ResultsOf the 13 health care workers interviewed, 12 interviewees reported experiencing at least one sacred moment during their clinical careers. None of the interviewees were initially familiar with the term; however, all understood the concept once explained. Interview findings were organized into four domains: (1) common elements, (2) impact, (3) barriers, and (4) provider reactions. Common elements included a moment of deep interconnection between provider and patient, often involving end-of-life patients. The impact of these moments was most commonly described as an increased sense of purpose in their role. Lack of time with patients was the most common barrier.ConclusionsSacred moments are commonly experienced by health care workers in a radiation oncology consult service. They helped to humanize the patient, buffer against provider burnout, and increase a sense of purpose and job satisfaction.
| S-EPMC11471466 | biostudies-literature
Project description:Background"Sacred moments" are brief periods of time in which people experience a deep interconnectedness that may possess spiritual qualities and emotions. This concept has been shown to have a positive impact on individuals' overall well-being and stress in mental health settings. The concept of sacred moments has not been studied in acute care hospital settings.ObjectiveTo better understand the occurrence of sacred moments among hospitalized patients and their healthcare workers.DesignAn exploratory qualitative study that included in-depth interviews with patients and healthcare workers at two academic medical centers in the Midwestern United States.ParticipantsHospital healthcare workers (e.g., physicians, nurses, ancillary staff) and discharged patients with a recent hospital stay.ApproachSemi-structured telephone interviews were conducted with 30 participants between August 2020 and April 2021. Interviews were recorded and transcribed before conducting thematic analysis.Key resultsBoth healthcare workers and patients reported having experienced at least one sacred moment. Interview findings were organized into three main domains including (1) several common elements described by participants as marking these moments; (2) benefits experienced by both patients and healthcare workers; and (3) suggestions for fostering sacred moments within the hospital setting.ConclusionsAmong our participants, sacred moments were extremely common with the vast majority reporting to have experienced at least one in their lifetime. These moments were described as profound and important and shared many common elements. Our findings can be used to help recognize, understand, and promote sacred moments between hospitalized patients and healthcare workers.
| S-EPMC9845021 | biostudies-literature
Project description:Fuzzy cognitive mapping (FCM) is a practical tool in participatory research. Its main use is clarifying causal understandings from several knowledge sources. It provides a shared substrate or language for sharing views of causality. This makes it easier for different interest groups to agree what to do next. Each map is a collection of causal relationships with three elements: factors (cause and outcome), arrows linking factors, and weights indicating the perceived influence of each cause on its outcome. Stakeholder maps are soft models of how they see causes of an outcome, such as access to services or systemic racism. Based on a standardized FCM protocol, we present four moments in FCM analysis. (1) Agree shared meaning across maps. (2) Calculate the maximum influence of perceived causes. (3) Simplify the maps for communication. (4) Identify priorities for action. We provide explanations of the four moments in FCM analysis, with examples from five countries. FCM offers a practical means to guide health action. It incorporates local perspectives with transparent and traceable procedures.
| S-EPMC11613336 | biostudies-literature
Project description:The most recent update to the American Psychiatric Association's (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM-5) included Internet Gaming Disorder as a new potential psychiatric condition that merited further scientific study. The present research was conducted in response to the APA Substance-Related Disorders Working Group's research call to estimate the extent to which mischievous responding-a known problematic pattern of participant self-report responding in questionnaires-is relevant to Internet Gaming Disorder research. In line with a registered sampling and analysis plan, findings from two studies (n tot = 11,908) provide clear evidence that mischievous responding is positively associated with the number of Internet Gaming Disorder indicators participants report. Results are discussed in the context of ongoing problem gaming research and the discussion provides recommendations for improving the quality of scientific practice in this area.
| S-EPMC5028771 | biostudies-literature
Project description:IntroductionMedical educators feel ill equipped to respond to racism directed towards trainees. Available tools for responding to microaggressions rely on clarifying questions or aligning with the aggressor, which may add to the harm experienced by the target. We aimed to provide methods for faculty to recognize and respond to overt racism so that trainees feel supported in the clinical learning environment.MethodsWe created a faculty development workshop with didactic and experiential learning components based on Kolb's theory for program leadership to teach how to respond when racism was directed towards trainees. In the didactic session, we shared the IRES (identify, respond, end, support) tool we created to respond to overt racism. Participants took part in two small-group case-based practice sessions with group debriefing, followed by a postsession survey.ResultsOver 2 years, we held two sessions with a total of 43 faculty participants. Postsession survey response rate was 74% and showed a 1-point Likert-scale median increase (p < .001) in ability to distinguish the strategies for addressing overt racism versus microaggressions, confidence in responding to microaggressions versus overt racism, and ability to debrief learners. The majority of participants noted that scripted language was a valuable tool to promote upstander behavior.DiscussionParticipants appreciated this novel framework for responding to racism directed at trainees in the learning environment. Providing scripted language and being able to practice in a safe environment were particularly important. This training can be adapted to include residents, fellows, and other disciplines.
| S-EPMC11500618 | biostudies-literature
Project description:ObjectivesTo assess parents' first experiences of their very preterm babies and the neonatal intensive care unit (NICU).DesignQualitative study using semistructured interviews.Participants32 mothers and 7 fathers of very preterm babies (<32 weeks gestation).SettingThree neonatal units in tertiary care hospitals in South East England.ResultsFive themes were identified. The first describes parents' blurred recall of the birth. The second shows the anticipation of seeing and touching their baby for the first time was characterised by contrasting emotions, with some parents feeling scared and others excited about the event. The third theme describes parents' first sight and touch of their babies and their 'rollercoaster' of emotions during this time. It also highlights the importance of touch to trigger and strengthen the parent-baby bond. However, some parents were worried that touching or holding the baby might transmit infection or interfere with care. The fourth theme captures parents' impressions of NICU and how overwhelming this was particularly for parents who had not toured NICU beforehand or whose first sight of their baby was on NICU. The final theme captures unique experiences of fathers, in particular that many felt excluded and confused about their role.ConclusionsThis study informs family-centred care by providing insight into the experiences of parents of very preterm infants at a time when they are most in need of support. Clinical implications include the importance of offering parents preparatory tours of the NICU and including fathers.
| S-EPMC3641451 | biostudies-literature
Project description:BackgroundCluster randomized trials (CRTs) are trials in which intact groups such as hemodialysis centers or shifts are randomized to treatment or control arms. Pragmatic CRTs have been promoted as a promising trial design for nephrology research yet may also pose ethical challenges. While randomization occurs at the cluster level, the intervention and data collection may vary in a CRT, challenging the identification of research participants. Moreover, when a waiver of patient consent is granted by a research ethics committee, there is an open question as to whether and to what degree patients should be notified about ongoing research or be provided with a debrief regarding the nature and results of the trial upon completion. While empirical and conceptual research exploring ethical issues in pragmatic CRTs has begun to emerge, there has been limited discussion with patients, families, or caregivers of patients undergoing hemodialysis.ObjectiveTo explore with patients and families with experience of hemodialysis research the challenges raised by different approaches to designing pragmatic CRTs in hemodialysis. Specifically, their perceptions of (1) the use of a waiver of consent, (2) notification processes and information provided to participants, and (3) any other concerns about cluster randomized designs in hemodialysis.DesignFocus group and interview discussions of hypothetical clinical trial designs.SettingFocus groups and interviews were conducted in-person or via videoconference or telephone.ParticipantsPatient partners in hemodialysis research, defined as patients with personal experience of dialysis or a family member who had experience supporting a patient receiving hemodialysis, who have been actively involved in discussions to advise a research team on the design, conduct, or implementation of a hemodialysis trial.MethodsParticipants were invited to participate in focus groups or individual discussions that were audio recorded with consent. Recorded interviews were transcribed verbatim prior to analysis. Transcripts were analyzed using a thematic analysis approach.ResultsTwo focus groups, three individual interviews, and one interview involving a patient and family member were conducted with 17 individuals between February 2019 and May 2020. Participants expressed support for approaches that emphasized patient choice. Disclosure of patient-relevant risks and information were key themes. Both consent and notification processes served to generate trust, but bypassing patient choice was perceived as undermining this trust. Participants did not dismiss the option of a waiver of consent. They were, however, more restrictive in their views about when a waiver of consent may be acceptable. Patient partners were skeptical of claims to impracticability based on costs or the time commitments for staff.LimitationsAll participants were from Canada and had been involved in the design or conduct of a trial, limiting the degree to which results may be extrapolated.ConclusionsGiven the preferences of participants to be afforded the opportunity to decide about trial participation, we argue that investigators should thoroughly investigate approaches that allow participants to make an informed choice regarding trial participation. In keeping with the preference for autonomous choice, there remains a need to further explore how consent approaches can be designed to facilitate clinical trial conduct while meeting their ethical requirements. Finally, further work is needed to define the limited circumstances in which waivers of consent are appropriate.
| S-EPMC8317238 | biostudies-literature