scholarly journals Treating Systemic Lupus Erythematosus (SLE): The Impact of Historical Environmental Context on Healthcare Perceptions and Decision-Making in Charleston, South Carolina

2020 ◽  
Vol 17 (7) ◽  
pp. 2285
Author(s):  
Wendy Rodgers ◽  
Edith M. Williams ◽  
Brittany L. Smalls ◽  
Tyler Singleton ◽  
Ashley Tennessee ◽  
...  
Keyword(s):  
Decision Making ◽  
South Carolina ◽  
Lupus Erythematosus ◽  
Geographical Location ◽  
Chronic Illnesses ◽  
Trial Participation ◽  
Adult Care ◽  
The Impact ◽  
Culturally Tailored Interventions ◽  
Healthcare Perceptions

Introduction: Over 400,000 slaves were taken from Africa and brought to Charleston, South Carolina, as part of the transatlantic slave trade during the 18th and 19th centuries. Due to these negative historical events, the healthcare of African Americans in Charleston may be compromised in regard to chronic illnesses and other conditions affecting minorities, such as lupus. Materials and Methods: The current study used an ethnographic approach to obtain the perspectives of lupus patients with the goal of identifying gaps within current research. In addition to patient perspectives, the geographical location of Charleston, South Carolina was considered through inquiries around culture, community, advocacy, and client/patient interaction to establish a narrative for the themes that emerged. Results: The eleven major themes identified were connectedness, knowledge, experience with lupus, compliance, clinical trial participation, career and planning for the future, visits, access to resources, lifestyle, transition from child to adult care, and an overarching theme of self-management. Conclusion: Understanding healthcare perceptions and decision-making among culturally diverse populations, particularly those who have been defined by centuries of substandard care, marginalization, exploitation, and distrust, is critical to the development of culturally tailored interventions designed to improve patient outcomes and reduce health disparities.

Feasibility and preliminary data for a State-wide South Carolina Lupus Registry

Lupus ◽  
2021 ◽  
pp. 096120332110145
Author(s):  
Brittany L Smalls ◽  
Trevor D Faith ◽  
Hetlena Johnson ◽  
Edith M Williams
Keyword(s):  
South Carolina ◽  
Lupus Erythematosus ◽  
Preliminary Data ◽  
Autoimmune Disorder ◽  
Medical Community ◽  
Small Samples ◽  
Control Board ◽  
Prospective Survey ◽  
And Control ◽  
The Impact

Background Systemic lupus erythematosus (SLE) or lupus is an autoimmune disorder whose cause and reason for disproportionate impact on minorities remains enigmatic. Furthermore, statistics describing lupus incidence and prevalence are outdated and often based on small samples. To begin to address this disparity this report describes preliminary data to be utilized in the development of a state-wide lupus registry in South Carolina. Methods A prospective survey and retrospective data from the South Carolina Budget and Control Board Office of Research & Statistics were used to capture data pertaining to knowledge of lupus, prevalence, and access to lupus care. Results Retrospective ORS data indicated there were 11,690 individuals living with lupus in 2014 with the average direct cost of $69,999.40 in medical care. Prospective surveys (N = 325), in over 16 locations in South Carolina, showed 31% knew someone with lupus, 16% had been diagnosed with lupus, and 50% did not know of a medical facility that treated lupus. Conclusion A lupus registry and repository will provide ongoing access for researchers on the impact of lupus on communities in South Carolina. Lupus is highly prevalent, but disproportionately represented in terms of patient information and participation in clinical trials, so it is also expected that this preliminary work will provide an ongoing process in which the medical community can better engage lupus patients.

scholarly journals Family group decision-making interventions in adult healthcare and welfare: a systematic literature review of its key elements and effectiveness

BMJ Open ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. e026768
Author(s):  
Chantal F Hillebregt ◽  
Eline W M Scholten ◽  
Marcel W M Post ◽  
Johanna M A Visser-Meily ◽  
Marjolijn Ketelaar
Keyword(s):  
Decision Making ◽  
Group Decision Making ◽  
Group Decision ◽  
Controlled Trial ◽  
Intervention Group ◽  
Family Group ◽  
Quality Level ◽  
Adult Care ◽  
Level Of Evidence ◽  
The Impact

BackgroundFamily group decision-making (FGDM) is a structured decision-making process, aiming to shift the balance of power from professional towards the person in need and their family. It differentiates from other family-centred meetings by the presence of three key elements: (1) plan with actions/goals, (2) family driven, (3) three phases of meetings gradually increasing empowerment. FGDM studies are increasing in different settings in adult healthcare/welfare, although effectiveness is unknown at this date.Objectives(1) to systematically review the presence of the three FGDM key elements in family-centred interventions in adult care and welfare, (2) to evaluate the effectiveness of FGDM interventions.DesignSystematic review.Data sources and eligibility criteriaA total of 14 relevant electronic databases and 1 academic search machine were searched until February 2018. First, family-centred studies were selected with controlled trial designs in adult healthcare/welfare. Second, interventions were categorised as FGDM if all three key elements were present.Data extraction and synthesisStudies were examined concerning their (1) characteristics (2) quality/level of evidence (3) presence of FGDM key elements and (4) results.ResultsSix articles from three studies on family-centred interventions were selected from a total of 1680 articles. All were of low quality. One study (two articles) met all criteria for an FGDM intervention, describing the efficacy of family group conferences among social welfare recipients on mental health outcomes. Although the intervention group showed significantly better outcomes after 16–23 weeks; no differences were seen at the 1-year follow-up.ConclusionsControlled studies of both family-centred interventions and FGDM are still low in quantity and quality. No conclusions on FGDM effectiveness can be drawn. Further high-quality intervention studies are required to evaluate the impact of FGDM on adults in need, including their families; as well as evaluation research detecting possible barriers and facilitators influencing FGDM implementation.PROSPERO registration numberCRD42017077585.

Patterns of decision making about cancer clinical trial participation among the online cancer treatment community: A collaboration between SWOG and NexCura.

2012 ◽  
Vol 30 (18_suppl) ◽  
pp. CRA6009-CRA6009 ◽  
Author(s):  
Joseph M Unger ◽  
Dawn L. Hershman ◽  
Kenda Burg ◽  
Carol Moinpour ◽  
Kathy S. Albain ◽  
...  
Keyword(s):  
Decision Making ◽  
Demographic Factors ◽  
Participation Rate ◽  
Treatment Decision ◽  
Trial Participation ◽  
Lower Income ◽  
Treatment Decision Making ◽  
Study Results ◽  
New Diagnosis ◽  
The Impact

CRA6009 Background: Studies have shown an association between socioeconomic status (SES) and quality of oncology care, but less is known about the impact of SES on decision-making about CT participation. Methods: We assessed patterns of CT treatment decision-making according to important SES and demographic factors (age, sex, race, income, education) in a large sample of patients surveyed via a web-based treatment decision tool (NexCura, The Woodlands, TX). Eligible patients had a new diagnosis of breast, lung, colorectal, or prostate cancer, and were >18. Logistic regression (conditioning on type of cancer) was used. Reasons for non-participation in CTs were assessed using pre-specified items about treatment, family, cost, and logistics. All data were self-reported. Results: 5,499 patients were surveyed from 2007-2011. 40% discussed CTs with their physician; this differed by age (42% <65 v. 29% >65), income (42% >$50k/yr v. 36% <$50k/yr), and education (42% >college degree (CD) v. 37% <CD). 45% of discussions led to offers of CT participation, and 51% of offers led to CT participation. The overall CT participation rate was 9%, differing by age, income, and education (see table below). In a multivariate model including all SES and demographic factors (plus covariates comorbidity status and “distance to clinic”, a surrogate for convenience), income remained a predictor of CT participation (OR 0.73, 95% CI, 0.57-0.94, p=.01). Even in patients >65, who are nearly universally covered by Medicare, lower income predicted reduced CT participation (age by income interaction test, p>.05). Cost concerns were much more evident among lower income patients (p=.0001). Conclusions: Lower income patients were less likely to participate in CTs, even when considering age group.A better understanding of why income is a barrier may help identify ways to make CTs better available to all patients, and would increase the generalizability of CT study results across all levels of SES. [Table: see text]

Quota Women Are Threatening to Men

2017 ◽  
Vol 76 (3) ◽  
pp. 107-116 ◽  
Author(s):  
Klea Faniko ◽  
Till Burckhardt ◽  
Oriane Sarrasin ◽  
Fabio Lorenzi-Cioldi ◽  
Siri Øyslebø Sørensen ◽  
...  
Keyword(s):  
Decision Making ◽  
Organizational Performance ◽  
Gender Stereotypes ◽  
Perceived Threat ◽  
Preferential Treatment ◽  
Public Sector Employees ◽  
Different Types ◽  
Low Levels ◽  
Women In Decision Making ◽  
The Impact

Abstract. Two studies carried out among Albanian public-sector employees examined the impact of different types of affirmative action policies (AAPs) on (counter)stereotypical perceptions of women in decision-making positions. Study 1 (N = 178) revealed that participants – especially women – perceived women in decision-making positions as more masculine (i.e., agentic) than feminine (i.e., communal). Study 2 (N = 239) showed that different types of AA had different effects on the attribution of gender stereotypes to AAP beneficiaries: Women benefiting from a quota policy were perceived as being more communal than agentic, while those benefiting from weak preferential treatment were perceived as being more agentic than communal. Furthermore, we examined how the belief that AAPs threaten men’s access to decision-making positions influenced the attribution of these traits to AAP beneficiaries. The results showed that men who reported high levels of perceived threat, as compared to men who reported low levels of perceived threat, attributed more communal than agentic traits to the beneficiaries of quotas. These findings suggest that AAPs may have created a backlash against its beneficiaries by emphasizing gender-stereotypical or counterstereotypical traits. Thus, the framing of AAPs, for instance, as a matter of enhancing organizational performance, in the process of policy making and implementation, may be a crucial tool to countering potential backlash.

The impact of patient narratives on medical students’ perceptions of shared decision making: A randomized controlled trial

2020 ◽  
Author(s):  
Martina Bientzle ◽  
Marie Eggeling ◽  
Simone Korger ◽  
Joachim Kimmerle
Keyword(s):  
Decision Making ◽  
Medical Students ◽  
Shared Decision Making ◽  
Medical Training ◽  
Controlled Trial ◽  
Future Research ◽  
Shared Decision ◽  
Randomized Controlled ◽  
Information Text ◽  
The Impact

BACKGROUND: Successful shared decision making (SDM) in clinical practice requires that future clinicians learn to appreciate the value of patient participation as early as in their medical training. Narratives, such as patient testimonials, have been successfully used to support patients’ decision-making process. Previous research suggests that narratives may also be used for increasing clinicians’ empathy and responsiveness in medical consultations. However, so far, no studies have investigated the benefits of narratives for conveying the relevance of SDM to medical students.METHODS: In this randomized controlled experiment, N = 167 medical students were put into a scenario where they prepared for medical consultation with a patient having Parkinson disease. After receiving general information, participants read either a narrative patient testimonial or a fact-based information text. We measured their perceptions of SDM, their control preferences (i.e., their priorities as to who should make the decision), and the time they intended to spend for the consultation.RESULTS: Participants in the narrative patient testimonial condition referred more strongly to the patient as the one who should make decisions than participants who read the information text. Participants who read the patient narrative also considered SDM in situations with more than one treatment option to be more important than participants in the information text condition. There were no group differences regarding their control preferences. Participants who read the patient testimonial indicated that they would schedule more time for the consultation.CONCLUSIONS: These findings show that narratives can potentially be useful for imparting the relevance of SDM and patient-centered values to medical students. We discuss possible causes of this effect and implications for training and future research.

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