scholarly journals Engaging Women with Limited Health Literacy in Mammography Decision-Making: Perspectives of Patients and Primary Care Providers

2020 ◽  
Author(s):  
Christine M. Gunn ◽  
Ariel Maschke ◽  
Michael K. Paasche-Orlow ◽  
Nancy R. Kressin ◽  
Mara A. Schonberg ◽  
...  
Keyword(s):  
Primary Care ◽  
Decision Making ◽  
Health Literacy ◽  
Primary Care Providers ◽  
Care Providers ◽  
Limited Health Literacy ◽  
Limited Health

Sickle Cell Trait Knowledge and Health Literacy in Caregivers Who Receive in-Person Sickle Cell Trait Education

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 2340-2340 ◽  
Author(s):  
Susan E Creary ◽  
Ismahan Adan ◽  
Joseph R Stanek ◽  
Sarah O'Brien ◽  
Deena J Chisolm ◽  
...  
Keyword(s):  
Health Literacy ◽  
Sickle Cell ◽  
Conflicts Of Interest ◽  
Sickle Cell Trait ◽  
Primary Care Providers ◽  
The United States ◽  
Care Providers ◽  
Childbearing Age ◽  
Limited Health Literacy ◽  
Limited Health

Abstract Background Sickle cell trait (SCT) affects approximately 8% of African Americans and these individuals are at risk of having children with SCT and sickle cell disease (SCD). Universal newborn screening in the United States detects SCT, but only 16% of individuals of childbearing age with SCT know their status. This is because SCT is not reliably recorded in medical records and SCT may not be consistently or effectively communicated to caregivers. Interventions that increase caregivers' SCT knowledge are important so that individuals with SCT can make informed decisions about their reproductive health. Objectives The objectives of this study were to determine if in-person SCT education with a trained educator improved caregivers' SCT knowledge and to assess caregivers' satisfaction with their SCT education. Methods Nationwide Children's Hospital (NCH) is a SCT referral center in Columbus, OH. At NCH, it is standard that caregivers of infants with SCT who are referred by their primary care providers receive in-person SCT education using visual aids from an educator who has completed a hemoglobinopathy counselor training course. From August 2015-July 2016, we performed a prospective, cross-sectional study of English-speaking caregivers of infants with hemoglobin S-trait who presented for education. Caregivers were excluded if they had SCD or previously received SCT education at NCH. Prior to receiving education, subjects electronically reported their demographic information and completed a health literacy assessment using the Newest Vital Sign (NVS, range 0-6) and an 8-question (true/false, multiple choice) pilot-tested, SCT knowledge assessment (SCTKA) that included items from a published SCT knowledge study and items routinely discussed during NCH SCT education. Lower NVS scores suggest a higher likelihood of limited health literacy. Caregivers with SCTKA scores <75% were considered to have low knowledge. Immediately after receiving education, caregivers repeated the SCTKA and provided feedback about the session. Assessments were not available to the educator during the session. The Wilcoxon Signed-Rank test was used to compare SCTKA scores pre- and post-education. Mann-Whitney tests were used to compare NVS and pre-SCTKA scores between those with high and low SCT knowledge after education. Results We recruited 114/374 eligible caregivers who presented during the study period and 113 completed the study. Subjects were mostly female (77%), 18-39 years of age (95.6%), parents or step parents (95.6%) of the child, and some (34.8%) reported that they had SCT. Many caregivers (52.2%) had NVS scores <4, but most (94.7%) reported the education was easy to understand, their questions were answered (99.1%), and they do intend to inform their child of their SCT status (99.1%). Caregivers' median pre-education SCTKA score significantly improved from 62.5% (IQR=25%) to 87.5% (IQR=12.5%) with education (p <0.0001). Only 38.1% of caregivers had high SCT knowledge pre-education but most (90.3%) achieved high knowledge with education. Caregivers with low SCT knowledge after education had significantly lower NVS scores (median=1, p=0.0286) and baseline SCTKA scores (median=50%, p=0.0032) compared to those with high SCT knowledge after education (NVS=3.5, baseline SCTKA median=62.5%). Discussion Our study suggests that caregivers' baseline SCT knowledge is low and improves with in-person education. Despite overall caregiver satisfaction and intensive in-person education from a trained educator, approximately 10% did not achieve high SCT knowledge and our results show that these caregivers may have lower baseline SCT knowledge and health literacy. Assessing caregivers' health literacy and SCT knowledge prior to education may be useful to allow educators to modify their education to meet the needs of those with limited health literacy and SCT knowledge. Future studies need to determine if tailored education results in high SCT knowledge among all caregivers, if caregivers' SCT knowledge is sustained, and if high caregiver knowledge results in more individuals with SCT knowing their status and using this knowledge to inform their reproductive decision-making. Disclosures No relevant conflicts of interest to declare.

scholarly journals Using Mixed Methods With Multiple Stakeholders to Inform Development of a Breast Cancer Screening Decision Aid for Women With Limited Health Literacy

2021 ◽  
Vol 6 (2) ◽  
pp. 238146832110332
Author(s):  
Christine M. Gunn ◽  
Ariel Maschke ◽  
Michael K. Paasche-Orlow ◽  
Ashley J. Housten ◽  
Nancy R. Kressin ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Literacy ◽  
Cancer Screening ◽  
Breast Cancer Screening ◽  
Primary Care Providers ◽  
Safety Net ◽  
Informational Needs ◽  
Care Providers ◽  
Limited Health Literacy ◽  
Limited Health

Background. When stakeholders offer divergent input, it can be unclear how to prioritize information for decision aids (DAs) on mammography screening. Objectives. This analysis triangulates perspectives (breast cancer screening experts, primary care providers [PCPs], and patients with limited health literacy [LHL]) to understand areas of divergent and convergent input across stakeholder groups in developing a breast cancer screening DA for younger women with LHL. Design. A modified online Delphi panel of 8 experts rated 57 statements for inclusion in a breast cancer screening DA over three rounds. Individual interviews with 25 patients with LHL and 20 PCPs from a large safety net hospital explored informational needs about mammography decision making. Codes from the qualitative interviews and open-ended responses from the Delphi process were mapped across stakeholders to ascertain areas where stakeholder preferences converged or diverged. Results. Four themes regarding informational needs were identified regarding 1) the benefits and harms of screening, 2) different screening modalities, 3) the experience of mammography, and 4) communication about breast cancer risk. Patients viewed pain as the primary harm, while PCPs and experts emphasized the harm of false positives. Patients, but not PCPs or experts, felt that information about the process of getting a mammogram was important. PCPs believed that mammography was the only evidence-based screening modality, while patients believed breast self-exam was also important for screening. All stakeholders described incorporating personal risk information as important. Limitations. As participants came from one hospital, perceptions may reflect local practices. The Delphi sample size was small. Conclusions. Patients, experts, and PCPs had divergent views on the most important information needed for screening decisions. More evidence is needed to guide integration of multiple stakeholder perspectives into the content of DAs. [Box: see text]

scholarly journals Asylum Seekers and Swiss Nationals with Low-Acuity Complaints: Disparities in the Perceived level of Urgency, Health Literacy and Ability to Communicate—A Cross-Sectional Survey at a Tertiary Emergency Department

2020 ◽  
Vol 17 (8) ◽  
pp. 2769 ◽  
Author(s):  
Karsten Klingberg ◽  
Adrian Stoller ◽  
Martin Müller ◽  
Sabrina Jegerlehner ◽  
Adam D. Brown ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Literacy ◽  
Primary Care Providers ◽  
Control Group ◽  
Care Providers ◽  
Health Seeking ◽  
Health Seeking Behavior ◽  
Medical Needs ◽  
Seeking Behavior ◽  
Attending Physicians

Background: Emergency departments (EDs) are being increasingly used for low-acuity conditions and as primary care providers. Research indicates that patients with the status of asylum seeker (AS) may be seeking care in EDs at higher levels than nationals. The aim of this study was to identify disparities in the use of emergency care between AS and Swiss nationals (SN) with non-urgent complaints. Methods: Data were obtained from a survey in the period 01/12/2016–31/07/2017 of walk-in low-acuity patients attending the ED of the University Hospital Bern (Switzerland). AS and a gender, age-matched control group of SN of ≥16 years of age were included. Sociodemographic and survey data comprised information about health-seeking behavior in the home and reception country, knowledge of health care systems (HCSs), barriers to care and perceived acuity of the visit. Furthermore, attending physicians assessed the level of urgency of each case. Results: Among AS patients, 30.2% reported that they had no knowledge of the Swiss HCS. In total, 14.2% considered that their medical needs were non-urgent. On the other hand, 43.4% of the attending physicians in the ER considered that the medical needs were non-urgent. This contrast was less pronounced in SN patients. The majority of AS (63.2%) and SN (67.6%) patients sought care from the ED without first contacting a GP. In 53.8% of cases, an interpreter was needed during the ED consultation. Conclusions: Several factors associated with health-seeking behavior in the ED differed between AS and SN patients. Measures to increase health literacy, provision of easily accessible primary care services and intercultural-trained staff could improve quality of care and reduce the usage of EDs as primary care providers.

scholarly journals Instrumental and affective communication with patients with limited health literacy in the palliative phase of cancer or COPD

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Janneke Noordman ◽  
Lotte Schulze ◽  
Ruud Roodbeen ◽  
Gudule Boland ◽  
Liesbeth M. van Vliet ◽  
...  
Keyword(s):  
Health Literacy ◽  
Treatment Options ◽  
Healthcare Providers ◽  
Care Providers ◽  
Affective Communication ◽  
Limited Health Literacy ◽  
Emotional Coping ◽  
Limited Health ◽  
Palliative Phase ◽  
Instrumental Communication

Abstract Background Patients have a ‘need to know’ (instrumental need) and a ‘need to feel known’ (affective need). During consultations with patients with limited health literacy (LHL) in the palliative phase of their disease, both the instrumental and the affective communication skills of healthcare providers are important. The study aims to explore instrumental and affective communication between care providers and LHL patients in the palliative phase of COPD or cancer. Methods In 2018, consultations between LHL patients in the palliative phase of cancer or COPD and their healthcare providers were video-recorded in four hospitals in the Netherlands. As there was no observation algorithm available for this setting, several items were created to parameterize healthcare providers’ instrumental communication (seven items: understanding, patient priorities, medical status, treatment options, treatment consequences, prognosis, and information about emotional distress) and affective communication (six items: hope, support, reassurance, empathy, appreciation, and emotional coping). The degree of each item was recorded for each consultation, with relevant segments of the observation selected and transcribed to support the items. Results Consultations between 17 care providers and 39 patients were video-recorded and analyzed. Care providers primarily used instrumental communication, most often by giving information about treatment options and assessing patients’ care priorities. Care providers assessed patients’ understanding of their disease less often. The patients’ prognosis was not mentioned in half the consultations. Within the affective domain, the care providers did provide support for their patients; providing hope, reassurance, empathy, and appreciation and discussing emotional coping were observed less often. Conclusions Care providers used mostly instrumental communication, especially treatment information, in consultations with LHL patients in the palliative phase of cancer or COPD. Most care providers did not check if the patient understood the information, which is rather crucial, especially given patients’ limited level of health literacy. Healthcare providers did provide support for patients, but other expressions of affective communication by care providers were less common. To adapt the communication to LHL patients in palliative care, care providers could be less wordy and reduce the amount of information, use ‘teach-back’ techniques and pay more attention to affective communication.

scholarly journals How to decide adequately? Qualitative study of GPs’ view on decision-making in self-referred and physician-referred emergency department consultations in Berlin, Germany

BMJ Open ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. e026786 ◽  
Author(s):  
Sarah Oslislo ◽  
Christoph Heintze ◽  
Martina Schmiedhofer ◽  
Martin Möckel ◽  
Liane Schenk ◽  
...  
Keyword(s):  
Primary Care ◽  
Decision Making ◽  
Qualitative Study ◽  
Qualitative Content Analysis ◽  
Wide Spectrum ◽  
Influencing Factor ◽  
Primary Care Providers ◽  
Ambulatory Setting ◽  
Care Providers ◽  
Registration Number

ObjectivesPatients with acute symptoms present not only to general practitioners (GPs), but also frequently to emergency departments (EDs). Patients’ decision processes leading up to an ED self-referral are complex and supposed to result from a multitude of determinants. While they are key providers in primary care, little is known about GPs’ perception of such patients. This qualitative study explores the GPs’ view regarding motives and competences of patients self-referring to EDs, and also GPs’ rationale for or against physician-initiated ED referrals.DesignQualitative study with semi-structured, face-to-face interviews; qualitative content analysis.SettingGP practices in Berlin, Germany.Participants15 GPs (female/male: 9/6; mean age 53.6 years).ResultsThe interviewed GPs related a wide spectrum of factors potentially influencing their patients’ decision to visit an ED, and also their own decision-making in potential referrals. Considerations go beyond medical urgency. Statements concerning patients’ surmised rationale corresponded to GPs’ reasoning in a variety of important areas. For one thing, the timely availability of an extended spectrum of diagnostic and therapeutic options may make ED services attractive to both. Access difficulties in the ambulatory setting were mentioned as additional triggers for an ED visit initiated by a patient or a GP. Key patient factors like severity of symptoms and anxiety also play a major role; a desire for reassurance may lead to both self-referred and physician-initiated ED visits. Patients’ health competence was prevailingly depicted as limited, with the internet as an important influencing factor. Counselling efforts by GP were described as crucial for improving health literacy.ConclusionsHealth education could hold promise when aiming to reduce non-urgent ED consultations. Primary care providers are in a key position here. Amelioration of organisational shortages in ambulatory care, for example, limited consultation hours, might also make an important impact, as these trigger both self-referrals and GP-initiated ED referrals.Trial registration numberDRKS00011930.

scholarly journals Primary Care Experiences of Emergency Department Patients With Limited Health Literacy

2016 ◽  
Vol 39 (1) ◽  
pp. 32-41 ◽  
Author(s):  
Sarah E. Bauer ◽  
Jessica R. Schumacher ◽  
Allyson G. Hall ◽  
Phyllis Hendry ◽  
Jennifer M. Peltzer-Jones ◽  
...  
Keyword(s):  
Primary Care ◽  
Emergency Department ◽  
Health Literacy ◽  
Limited Health Literacy ◽  
Limited Health ◽  
Emergency Department Patients

scholarly journals English Language Proficiency, Health Literacy, and Trust in Physician Are Associated with Shared Decision Making in Rheumatoid Arthritis

2014 ◽  
Vol 41 (7) ◽  
pp. 1290-1297 ◽  
Author(s):  
Jennifer L. Barton ◽  
Laura Trupin ◽  
Chris Tonner ◽  
John Imboden ◽  
Patricia Katz ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Decision Making ◽  
Health Literacy ◽  
Shared Decision Making ◽  
Language Proficiency ◽  
English Language ◽  
English Language Proficiency ◽  
Shared Decision ◽  
Limited Health Literacy ◽  
Limited Health

Objective.Treat-to-target guidelines promote shared decision making (SDM) in rheumatoid arthritis (RA). Also, because of high cost and potential toxicity of therapies, SDM is central to patient safety. Our objective was to examine patterns of perceived communication around decision making in 2 cohorts of adults with RA.Methods.Data were derived from patients enrolled in 1 of 2 longitudinal, observational cohorts [University of California, San Francisco (UCSF) RA Cohort and RA Panel Cohort]. Subjects completed a telephone interview in their preferred language that included a measure of patient-provider communication, including items about decision making. Measures of trust in physician, education, and language proficiency were also asked. Logistic regression was performed to identify correlates of suboptimal SDM communication. Analyses were performed on each sample separately.Results.Of 509 patients across 2 cohorts, 30% and 32% reported suboptimal SDM communication. Low trust in physician was independently associated with suboptimal SDM communication in both cohorts. Older age and limited English proficiency were independently associated with suboptimal SDM in the UCSF RA Cohort, as was limited health literacy in the RA Panel Cohort.Conclusion.This study of over 500 adults with RA from 2 demographically distinct cohorts found that nearly one-third of subjects report suboptimal SDM communication with their clinicians, regardless of cohort. Lower trust in physician was independently associated with suboptimal SDM communication in both cohorts, as was limited English language proficiency and older age in the UCSF RA Cohort and limited health literacy in the RA Panel Cohort. These findings underscore the need to examine the influence of SDM on health outcomes in RA.

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