United Ostomy Associations of America's Ostomy and Continent Diversion Patient Bill of Rights: An Examination of Best-in-Practice Care for Ostomy Patients.

PURPOSE: The purpose of this study was to examine best practices through utilization of United Ostomy Associations of America's (UOAA's) Ostomy and Continent Diversion Patient Bill of Rights (PBOR) from the perspective of patients and clinicians. DESIGN: Cross-sectional, comparative design. SUBJECTS AND SETTING: The sample comprised 412 patients with ostomies (colostomy, ileostomy, urostomy) and continent diversions (such as J-pouch) and 195 clinicians (physicians, nurses, nurse assistants) residing in the United States. All patients underwent surgery within the United States. Almost half of participants (n = 196/412; 47.6%) had surgery within 5 years of data collection. METHODS: Participants were recruited between 2019 and 2020. Patient data were collected from UOAA's national conference and affiliated ostomy support groups. Clinician data were collected at the 2019 National WOCN Society Conference and through affiliated nursing and medical professional societies. Participants completed a self-administered online or printed survey; items focused on the Ostomy and Continent Diversion PBOR and standards of ostomy care. RESULTS: Among clinicians familiar with the PBOR, 54% (n = 58/106) reported UOAA's PBOR was being used to inform ostomy care. When analyzing the full sample of both clinicians and patients, we found that less than 13% (n = 25/195) of clinicians and 5% (n = 20/412) of patients reported that all 16 of the recommended standards of care outlined in the PBOR were incorporated into ostomy care. Analysis also revealed differences between patients' and clinicians' reports of provision of 14 of the 16 PBOR components. They include a discussion on emotional impact of the ostomy surgery, instructions on troubleshooting potential difficulties with the ostomy, provision of educational materials, and providing information for ordering supplies. CONCLUSIONS: Study findings showed discrepancies between the PBOR standards of care being provided by clinicians versus the care patients reported they received. Findings also indicated variability in the consistency of delivering all components of the PBOR. We assert that further awareness and wider utilization of the PBOR in every health care setting in the United States are needed to provide best care to patients living with an ostomy.

Marginalization in the Medical Encounter: Ostomy Patients Experience of Perceived Stigmatizing Sentiments from Medical Clinicians.

Introduction: Ostomy stigma negatively impacts the health of people with an ostomy and contributes to a lower quality of life and health outcomes. Objective: To assess whether participants experience perceived stigmatizing sentiments (SS) from medical clinicians at the time of their ostomy procedure. Methods: Using a nonprobability sample of 312 persons with an ostomy, we conducted a retrospective descriptive study. We measured SS as patients' self-reports of verbal and non-verbal communication from clinicians that were perceived to be negative and may contribute to ostomy stigma. We used thematic analyses to analyze open-ended written comments. Results: Findings indicate that ostomy patients experience stigmatizing sentiments from their medical clinician before and after surgery. Sixteen percent of patients reported a SS, such as clinicians stating feelings of disgust, showing visible signs of disgust, or treating patients negatively regarding the ostomy. Conclusion: The perceived treatment that this patient cohort experienced in healthcare likely contributes to ostomy stigmatization and may impact ostomy patients' psychosocial adjustment. Future research should examine the specific consequences of perceived stigmatizing sentiments from medical clinicians.

Ostomy Care During Hospital Stay for Ostomy Surgery and the United Ostomy Associations of America Patient Bill of Rights: A Cross-sectional Study.

PURPOSE: The purpose of this study was to determine whether ostomy patients are receiving ostomy care pre- and postoperatively in accordance with the United Ostomy Associations of America Ostomy and Continent Diversion Patient Bill of Rights. DESIGN: Descriptive, quantitative study. SUBJECTS AND SETTING: The sample comprised 325 participants with an ostomy living in the United States. All participants underwent ostomy surgery in the United States. METHODS: Participants were recruited through a purposive, nonprobability sampling method based on the presence of an ostomy and the ability to read and understand English. Data were collected between summer 2017 and fall 2018 from ostomy support groups (online and in-person support groups). Respondents completed a self-administered online questionnaire, which included closed-ended and open-ended questions. RESULTS: Forty percent (n = 127) of participants reported not being supervised changing their pouch before discharge. Forty-two percent (n = 137) reported receiving only hands-on instruction on how to care for their ostomy after surgery (no reading materials, nor video tutorial). Slightly more than half (52%; n = 170) reported not receiving support group information, and only 14% (n = 46) indicated participating in a discussion on intimacy concerns. CONCLUSIONS: The study demonstrates that ostomy care at the hospital can improve. Receiving an ostomy is a life-changing operation, and the first line of support for ostomy patients is their provider. Future research should examine ostomy care from providers' perspectives and, prospectively, in order to test care measures on patient health outcomes.

Peoples' Experiences With Pouches (PEWP) Study: Ostomate-Provider Interactions.

BACKGROUND: Minimal research focuses on interactions between providers and new ostomy patients. Studies show that provider communication is important for patient health outcomes. OBJECTIVE: The purpose of this study was to investigate ostomy patients' perceptions of provider communication following surgery and whether interactions adequately prepare ostomy patients to care for their new appliance. METHOD: Using a nonprobability national sample of 381 ostomy patients, we conducted a retrospective quantitative study. We measured adequacy of provider communication from self-reports from ostomy patients. RESULTS: The results show that almost half of the sample (49%) reported receiving inadequate communication from providers. We also found a relationship between ostomy patients' educational level and their perceptions of receiving adequate communication. Notably, patients with lower educational attainment reported receiving adequate communication up to 4 times more than patients with higher educational attainment. CONCLUSION: Our results suggest that not only do ostomy patients need better communication from providers following their surgery but also patients with higher educational attainment appear to expect more information from providers than patients with lower educational attainment.

A Prospective Examination of Racial Microaggressions in the Medical Encounter.

Disparities in healthcare and health outcomes between whites and non-whites continue to plague the US healthcare system. A large literature suggests that people of color face obstacles at various points in the healthcare system. This article examines one such obstacle: whether patients of color experience microaggressions from physicians during primary care medical visits. A majority of microaggression studies are qualitative and retrospective in nature. In the current study, we use a prospective approach to broaden how microaggressions are measured, as well as understand differential treatment of racial minorities within healthcare. Using data derived from audio recordings of medical visits (n = 224), we utilize a quantitative measure to examine microaggressions in the medical encounter. We find that when race status differences are present between patient and physician, patients of color are more likely to experience microaggressions from their physician. The results suggest that medical encounters differ depending on characteristics of the parties involved. These differences may not only perpetuate the differential treatment of people of color but also contribute to health disparities for people of color.

Patient-Centered Care: An Examination of Provider-Patient Communication Over Time.

OBJECTIVE: To examine the quality of provider communication over time considering the increasing emphasis on patient-centered care (PCC). Patient-centered care has been shown to have a positive impact on health outcomes, care experiences, quality-of-life, as well as decreased costs. Given this emphasis, we expect that provider-patient communication has improved over time. DATA SOURCE: We collected primary data by self-report surveys between summer 2017 and fall 2018. STUDY DESIGN: We use a quantitative retrospective cohort study of a national sample of 353 patients who had an ostomy surgery. DATA EXTRACTION METHOD: We measure provider communication from open-ended self-reports from patients of the number of stated inadequacies in their care. PRINCIPAL FINDINGS: Results show that the time since patients had their surgery is related to higher quality provider communication. That is, patients who had their surgery further back in time reported higher quality provider communication compared with patients who had their surgery performed more recently. CONCLUSION: Results suggest that the quality of provider communication has not improved even with an emphasis on PCC.