Enhancing drug therapy in ostomy patients: Best practice recommendations for medication management.

BACKGROUND: Ostomy surgery is a common procedure that poses various challenges for patients and healthcare professionals. There are numerous guidelines addressing different ostomy-related problems (ORPs) and supporting an interdisciplinary approach for ostomy care, but evidence-based literature for optimizing drug therapy after ostomy surgery is lacking. AIM: To investigate and characterize typical ORPs in relation to drug therapy and provide best practice recommendations from a pharmaceutical point of view. METHODS: Patients with an ileo- or colostomy were consecutively enrolled in a prospective, interventional monocentric cohort study during hospitalization, with particular attention to medication. A clinical pharmacist assessed DRPs by performing level 3 medication reviews and patient interviews. Pharmacists' interventions (PIs) were evaluated by two senior clinical pharmacists and documented in DokuPIK (Documentation of Pharmacists' Interventions in the Hospital). Following interdisciplinary discussions, physicians either accepted or rejected the proposed changes in drug therapy. Comparisons were made between ileostomy and colostomy patients regarding type and extent of PIs. RESULTS: Out of the 80 patients included in the cohort, 54 (67.5%) had an ileostomy and 26 (32.5%) a colostomy. In this study, 288 PIs were documented (234 ileostomy vs. 54 colostomy), of wich 94.0% were accepted and implemented by the physicians. The most common reason for PIs in both subgroups (29.6% ileostomy vs. 26.1% colostomy) was a missing drug although indicated (e.g. no loperamide, but high stoma output). The proportion of PIs associated with the ostomy was higher in ileostomy patients (48.3% ileostomy vs. 31.5% colostomy; p = 0.025). Typical ORPs were extracted and analyzed as case studies including recommendations for their respective management and prevention. CONCLUSION: This study highlights the importance of clinical pharmacists being a part of interdisciplinary teams to collaboratively improve ostomy care and patient safety. Especially ileostomy patients are more vulnerable for ORPs in the context of drug therapy and need to be monitored carefully.

Exploring Nursing Students' First Experiences Providing Wound and Ostomy Care to Patients: A Qualitative Study.

BACKGROUND: Undergraduate nursing students experience significant differences between practice with models, manikins, or simulation applications and real patients in a clinical setting. Students' experiences applying their theoretical knowledge to real patient-care practices are little understood. OBJECTIVE: To determine the experiences of nursing students in providing skin, chronic wound, and ostomy care to real patients for the first time in a clinical setting within the content of the Ostomy and Wound Care Nursing Track Program (OWCNTP) and to define factors affecting this program. METHODS: The research was conducted qualitatively using the individual critical incident technique, and 17 senior undergraduate nursing students enrolled in the Nursing OWCNTP were selected using a simple random sampling method. In the classroom setting, individual face-to-face interviews were conducted using the critical incident technique. Data were analyzed with inductive content analysis. RESULTS: The research found that students experience genuine caregiving in putting their experiences from the Track Program into practice with real patients in a clinical setting. Three main themes were identified: experiencing real patient care in a clinical setting, being a competent student, and being a novice student. CONCLUSIONS: The study found that nursing students enrolled in the OWCNTP could apply their theoretical knowledge to care for real patients in clinical settings. Therefore, it is recommended that these programs be integrated into nursing curricula.

Course and predictors of supportive care needs among colorectal cancer survivors with ostomies: a longitudinal study.

PURPOSE: Although there is a growing emphasis on supportive care for cancer patients, those with colorectal cancer (CRC) who have ostomies require special attention in terms of their physical, psychological, spiritual, and social needs. However, there has been a lack of significant progress in meeting the supportive care needs of CRC survivors with ostomies. To bridge this gap, we conducted a prospective longitudinal study to track the trends in supportive care needs among CRC survivors with ostomies and identify any predictors over 6-month period. METHODS: A prospective longitudinal study was conducted at the wound and stoma clinic of Dalian University Affiliated Xinhua Hospital, focusing on CRC survivors with ostomies. A total of 143 participants completed self-report questionnaires on the 34-item Short-Form Supportive Care Needs Survey (SCNS-SF34-C (Mandarin)) and stoma complications at the first, third, and sixth month after surgery. ANOVA with repeated measure was utilized to assess the course of supportive care needs, with Generalized Estimating Equation (GEE) applied to identify predictors of SCNS. RESULTS: The supportive care needs and five dimensions scores were statistically significant at three time points (P < 0.05). The ratings of patients at the first, third, and sixth month after surgery revealed a decreasing trend in the scores for patient care and support, psychological needs, physical and daily living needs, and health system and information needs. However, the score for sexual needs showed an increased tendency. Higher levels supportive care needs were generally connected with a short duration after ostomy, high income level, resident medical insurance, spouse caregiver, other chronic disease, and stoma complications. CONCLUSIONS: Survivors' supportive care needs showed a dynamic trend over 6 months after surgery. Through three rounds, the primary needs were health system and information needs. It is recommended to integrate interdisciplinary health professionals and establish a comprehensive support and care system to effectively meet the diverse needs at different stages. Priority should be given to individuals with ostomies during the first and third month after surgery, particularly those with higher income levels, employee medical insurance, spouse caregivers, other chronic diseases, and stoma complications.

Supportive Care Needs of Patients With Temporary Ostomy in Enhanced Recovery After Surgery: A Mixed-Methods Study.

BACKGROUND: Enhanced recovery after surgery (ERAS), a global surgical quality improvement initiative, reduces the length of stay in the hospital. Temporary stoma care for rectal cancer is complex, and patients require prolonged care services to adjust to the stoma. The shorter stay durations in the new model challenge the conventional care pathways and create new patient needs. PURPOSE: This study was designed to explore the supportive care needs of patients under the new surgical model to provide a reference for the design of ERAS nursing care plans. METHODS: A convergent parallel mixed-methods design was used in this study. Patients with temporary stomas for rectal cancer were recruited using a convenience sampling method in gastrointestinal surgery wards and wound & stoma clinics in two public tertiary care hospitals in China. Standardized questionnaires were administered to 140 patients to collect quantitative data, and semistructured interviews were conducted individually with 13 patients to collect qualitative data. The questionnaire data were analyzed using descriptive statistics, and the interview data were analyzed using thematic analysis. RESULTS: "Health system and information needs" and "care and support needs" were identified in both the qualitative and quantitative analyses as the most significant unmet needs of the participants. In addition, the qualitative analysis identified receiving focused stoma care instructions and easily understandable information as essential to fulfilling health system and information needs. Care and support needs included access to continued postdischarge services and attention from medical professionals. CONCLUSION/IMPLICATIONS FOR PRACTICE: The participants in this study experienced a variety of unmet supportive care needs under the ERAS protocol, with gaps particularly notable in two categories: "health system and information needs" and "care and support needs." Increased perioperative care and shorter hospital stays under the ERAS protocol reduce opportunities for patients to receive targeted instruction and shift much of the ostomy education and care workload out of the hospital, requiring greater attention from clinical nurses to ensure quality of care.

Ostomy Information on the Internet-Is It Good Enough?

PURPOSE: The aim of this study was to determine which internet search engines and keywords patients with ostomies utilize, to identify the common websites using these terms, to determine what aspects of information they wanted, and to perform a quality and readability assessment for these websites. DESIGN: A cross-sectional survey of persons with ostomies to identify search engines and terms, followed by a structured assessment of the quality and readability of the identified web pages. SUBJECT AND SETTINGS: The sample comprised 20 hospitalized patients with ostomies cared for on a colorectal surgical ward of a tertiary care hospital located in Melbourne, Australia. There were 15 (75%) adult males and 5 (25%) adult females; their mean age was 52.2 years. Participants were surveyed between August and December 2020. METHODS: Patients with newly formed ostomies were surveyed about which search engines and keywords they would use to look for information and for which questions regarding ostomies they wanted answers. In addition, 2 researchers then performed independent searches using the search terms identified by patient participants. These searches were conducted in August 2021, with the geographical location set to Australia. The quality of the websites was graded using the DISCERN, Ensuring Quality Information for Patients, and Quality Evaluation Scoring Tool scoring assessments, and their readability was graded using the Flesch Reading Ease Score tool. RESULTS: Participants used Google as their primary search engine. Four keywords/phrases were identified: stoma for bowel surgery, ileostomy, colostomy, and caring for stoma. Multiple web pages were identified, 8 (21%) originated from Australia, 7 (18%) were from the United Kingdom, and 23 (61%) were from the United States. Most web pages lacked recent updates; only 18% had been undated within the last 12 months. The overall quality of the online information on ostomies was moderate with an average level of readability, deemed suitable for patient educational purposes. CONCLUSIONS: Information for persons living with an ostomy can be obtained from multiple web pages, and many sites have reasonable quality and are written at a suitable level. Unfortunately, these websites are rarely up-to-date and may contain advice that may not be applicable to individual patients.

The Effect of Pelvic Floor Muscle Exercises on Bowel Evacuation and Quality of Life in Following Intestinal Ostomy Closure: Randomized Controlled Trial.

PURPOSE: This purpose of this study was to evaluate the effect of pelvic floor muscle exercises (PFMEs) on bowel evacuation problems and health-related quality of life (HRQOL) following ostomy closure. DESIGN: Randomized controlled trial. SUBJECTS AND SETTING: Forty individuals following ostomy closure consented to participate in the study; 6 participants (15%) did not complete the trial (2 died and 2 required a second ostomy) yielding a study sample of 34. Participants were randomly allocated to an Exercise Group (EG, n = 17) and Control Group (CG, n = 17). The mean age of the EG was 55.7 (SD 12.6) years, whereas the mean age of the CG was 62.0 (SD 12.1) years. The study setting was the surgery clinic of 4 hospitals in Ankara, Turkey. Data were collected between December 2018 and May 2020. METHODS: The study intervention, PFME training by a clinician, was administered to participants in the EG; CG participants received no information regarding PFME. Data were collected during face-to-face interviews on the day before discharge and by phone at the first, second, third, and sixth months after surgery. A questionnaire was used for data collection that queried a demographic and pertinent clinical questions, along with the Assessment Form for Bowel Evacuation Habits and Psychosocial Problems, Wexner Scale, and the Short Form (SF-36) Health-related Quality of Life Scale. Descriptive statistics and Mann-Whitney U test, t-test, Pearson-χ2 test, Fisher's Exact test, Friedman test, and Cochran-Q test statistical analysis according to normal distribution were used in data evaluation. RESULTS: The number of defecations in the EG was statistically significantly lower than the CG at the second, third, and sixth months (P = .002, P = .002, P = .001, respectively). In addition, the number of individuals experiencing night defecation was statistically significantly less in the EG compared to the CG at the second-, third-, and sixth-month follow-ups (P = .001, P = .001, P = .028, respectively). HRQOL scores were also significantly higher in the EG. CONCLUSION: Pelvic floor exercises applied after ostomy closure are effective in reducing bowel evacuation and increasing quality of life. Given these findings, PFMEs are recommended for patients after ostomy closure.

Sociodemographic and clinical characteristics of people with ostomy and the adaptive domains of Roy's theory: A cross-sectional study.

INTRODUCTION: The adaptation of people with ostomies may be associated with and affected by sociodemographic and clinical factors. The present study aimed to investigate the association between the sociodemographic and clinical characteristics and the adaptation of people with an intestinal stoma. METHOD: An analytical study, carried out through an interview with 200 patients with ostomy for five months. For that, it was applied to scale for the level of adaptation of ostomy patients to measure the physiological domains, self-concept, role function and interdependence and a questionnaire was used in which sociodemographic and clinical information. Descriptive and multivariate analyses were performed to test the study hypothesis. RESULTS: The study pointed out statistically significant associations with male sex, age group below 60, low education level, Stoma time less than one year, below one minimum wage, temporary permanence criteria and presence of complications relation to low scores of adaptation. CONCLUSIONS: The association of sociodemographic and clinical factors with the measured adaptive modes provides important information for the planning of nursing care and other care providers, since it directs actions to the aspects that give greater adaptive difficulty to people with stomas and which are the focus of care nursing to this clientele.

Nursing interventions for the self-efficacy of ostomy patients: A systematic review.

BACKGROUND: Self-efficacy interventions, which include the acquisition of skills that enable patients to manage their health on a daily basis, play a key role in ostomy patients, which leads to significant changes in the quality of life of patients. In this context, nursing interventions to increase self-efficacy of ostomy patients are very important. In this context, nursing interventions are crucial to increase the self-efficacy of ostomy patients. OBJECTIVES: The aim of this systematic review is to describe nursing interventions for ostomy patients' self-efficacy (primary outcome) and the impact of these interventions on patient outcomes (complications, quality of life, satisfaction, psychological resilience, stoma adaptation) (secondary outcomes). METHOD: As a systematic review, this study included articles published in PUBMED, Web of Science, Science-Direct, TUBITAK-ULAKBIM, and TRDizin databases between January 2013 and January 2023 that included nursing interventions for self-efficacy ostomy patients. This systematic review was developed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist. The risk of bias was assessed using the RoB2 tool developed by Cochrane. RESULTS: A total of 1211 articles were retrieved from the databases using Turkish and English keywords. Fifteen studies met the study criteria. These studies found that various interventions, such as training, telephone follow-up, psychosocial support groups, or mobile applications provided to intervention groups, increased self-efficacy, decreased stoma-related complications, improved stoma adaptation, and improved quality of life by increasing patients' knowledge and awareness of stoma. CONCLUSION: Nursing interventions to improve the self-efficacy and adaptation of ostomy patients are critical. This improvement leads to a reduction in adverse patient outcomes and ostomy complications, shorter hospital stays, and increased patient and nurse satisfaction.

Gastrointestinal Ostomies in Children: A Primer for the Pediatrician.

Despite the advancement of medical therapies in the care of the preterm neonate, in the management of short bowel syndrome and the control of pediatric inflammatory bowel disease, the need to create fecal ostomies remains a common, advantageous treatment option for many medically complex children.

Effects of sexual counseling on sexual function and sexual quality of life of women with permanent intestinal ostomy.

BACKGROUND: Patients with an intestinal ostomy may experience significant sexual dysfunction that may have adverse impacts on quality of life. Appropriate sexual health counseling can be beneficial for these patients. AIM: This study was conducted to determine the effect of sexual counseling on the sexual function and sexual quality of life of women with a permanent intestinal ostomy. METHODS: For this experimental study, 60 female patients with a permanent intestinal ostomy were selected through convenience sampling and then randomly assigned to either the intervention or control groups. Patients in the intervention group received four 90-minute individual counseling sessions based on the PLISSIT (permission [P], limited information [LI], specific suggestions [SS], and intensive therapy [IT] model over a period of 4 weeks). The control group underwent routine training. Data were collected by use of a demographic information questionnaire, the Female Sexual Function Index, and the Sexual Quality of Life Female questionnaire. Both groups completed the questionnaires before and after the intervention. OUTCOMES: Study outcomes were the resulting data for the Female Sexual Function Index and the Sexual Quality of Life Female questionnaire. RESULTS: The results revealed a significant increase in the mean score of sexual function in the intervention group after counseling (P = .001). No significant difference was observed in the mean score of sexual quality of life between the 2 groups before the intervention (P > .05). In contrast, a significant increase was noted in the intervention group's sexual quality of life after the intervention (P = .001). CLINICAL IMPLICATIONS: The results indicate a need to sexual counseling interventions directed toward sexual function and sexual quality of life in women with permanent intestinal ostomy. STRENGTHS AND LIMITATIONS: Study strengths include utilization of the PLISSIT model for sexual counseling as an invaluable roadmap for healthcare professionals, systematically addressing patient needs within a tailored framework, and prescribing appropriate strategies over 4 distinct phases. Limitations include the use of convenience sampling and no follow-up duration. CONCLUSIONS: This study demonstrated the efficacy of counseling in enhancing sexual well-being of women with permanent intestinal ostomy.

Implementation of an Evidence-Based, Content-Validated, Standardized Support Surface Algorithm Tool in Home Health Care: A Quality Improvement Project.

PURPOSE: The purpose of this quality improvement project was to provide a standardized, repeatable, and easy-to-use process for selecting a support surface for prevention or treatment of pressure injuries (PIs). PARTICIPANTS AND SETTING: The Wound, Ostomy, and Continence Nurses Society Support Surface Algorithm was chosen to guide clinicians in selection of an appropriate support surface. These clinicians provide services to approximately 465,000 patients across the nation annually. APPROACH: This quality improvement project aimed to establish clinician knowledge and comfort levels when recommending a support surface and providing a standardized way to identify the appropriate support surface once a patient had been identified as at risk. The support surface algorithm was incorporated into our agency's electronic medical record (EMR); we chose this interactive algorithm to facilitate support surface selection among clinicians with no specialized expertise in PI treatment or prevention. OUTCOMES: Clinicians reported an increase in knowledge and comfort levels in the ability to select an appropriate support surface following implementation of the clinical decision support tool. Benchmarking data illustrated a decrease in the year over year aggregate (September 2018 to September 2021) trending for the Centers for Medicare & Medicaid Services quality outcome measures surrounding potentially avoidable events related to PIs. IMPLICATIONS FOR PRACTICE: Implementing the support surface algorithm assisted clinicians with support surface selection, elevated and standardized clinician practice, and reduced potentially avoidable events. As a result of this project, the Wound, Ostomy, and Continence Nurses Society Support Surface Algorithm Tool has been fully integrated into our EMR and is a standardized part of our clinical assessment.

A Peer-to-Peer Approach to Increasing Staff Competency and Engagement in Wound and Ostomy Care: A Quality Improvement Project.

PURPOSE: The purpose of this quality improvement (QI) project was to provide an innovative, participatory approach to the education of staff nurses and nursing support personnel to improve skills and competencies in wound and ostomy care while enhancing staff engagement and empowerment. PARTICIPANTS AND SETTING: Project planning occurred between January and October 2020 and implementation began in November 2020. The project was implemented in 1 intensive care unit and 6 adult medical-surgical units of a 288-bed community hospital in the northeastern United States (Bronxville, New York). Participants included RNs and nursing support staff working in intensive care and medical-surgical units. A postimplementation survey was conducted in May 2021. APPROACH: The Plan-Do-Study-Act (PDSA) model was used as a framework for this QI intervention. A peer-to-peer approach to staff education addressing different learning styles was used to improve knowledge and competencies of staff nurses pertaining to wound and ostomy care. OUTCOMES: There were 72 participants; 68% (n = 49) exhibited knowledge retention 5 months after initial participation; 85% (n = 61) reported a high level of engagement; and 97.5% (n = 70) reported a high level of satisfaction 5 months after project implementation. IMPLICATIONS FOR PRACTICE: An emerging need exists for educational innovation regarding wound and ostomy care to improve quality of care, nursing care outcomes, and staff engagement. Through a peer-to-peer approach to wound and ostomy care education, enhanced clinical knowledge and competencies can result in improved patient safety and increase care outcomes.

Missed nursing care and stoma care: an Italian survey.

BACKGROUND: In Italy, nursing research has paid special attention to 'missed nursing care'. The studies carried out, varying in tools and settings, describe considerable percentages of missed care. In the field of stoma care, the phenomenon has not been investigated to date. AIM: To investigate the prevalence of missed nursing care (MNC) in the Italian ostomy patient population and the most relevant causes suggested for this by stoma care nurses. DESIGN: Cross-sectional study. METHOD: The Italian version of the MISSCARE survey was used with some questions related to the stoma care pathway. The survey was targeted at hospitals in the country with dedicated services and/or pathways for ostomy patients, between February and April 2023. FINDINGS: A total of 461 questionnaires were sent out, 214 (53.3%) were analysed. The majority of the participants were female (160, 76.2%), median age of 50 years (35.0-53.8). The most common qualification was a Bachelor's degree (n=117; 54.9%) and work experience in stoma care was more than 10 years in 95 cases (50.3%). Prominent instances of MNC were identified, with hand washing (score 4.6 out of 5), compilation of nursing documentation and hygiene/skin care (score 4.5 out of 5) and patient/family education (score 4.4 out of 5) emerging as the most prevalent. The most notable omissions in the stoma care process encompassed educational facets, clinical monitoring, a comprehensive discharge plan, and diligent follow-up. Among the most frequent reasons were staff shortages (score 3.1 out of 4), unsuitable nurse-patient ratios (score of 3 out of 4) and insufficient numbers of experienced stoma care personnel (score of 3 out of 4). CONCLUSION: A substantial number of basic and clinically relevant nursing interventions were perceived to be missed, and this may lead to an increase in negative outcomes for ostomy patients.

Benefits of Collaboration Between the Wound, Ostomy, and Continence Nurse and Orthopedic Surgeon When Treating Skin Defects After Soft Tissue Sarcoma Resection: A Retrospective Case-Control Study.

PURPOSE: The purpose of this study was to evaluate the benefits of collaborative management between orthopedic surgery and WOC nurses in patients undergoing resection of subcutaneous sarcomas. DESIGN: Retrospective case-control study. SUBJECTS AND SETTING: The sample comprised 25 patients who underwent wide resection for soft tissue sarcoma, followed by 2-stage split-thickness skin grafting. Data collection occurred between January 2015 and April 2021 in a university hospital based in Kagoshima, Japan. For comparison, we categorized these patients into 2 groups: intervention group participants were managed by an orthopedic surgeon and a WOC nurse; nonintervention group members were managed without WOC nurse participation. METHODS: Patient background and treatment-related information was retrospectively collected from medical records and compared between the WOC nurse intervention group and the nonintervention group, including maximum tumor diameter, surgical time, maximum skin defect diameter, length of hospital stay, and time from surgery to complete wound healing. RESULTS: The average length of hospital stay was significantly shorter in the WOC nurse intervention group compared with the nonintervention group (38.3 days, SD = 8.0 vs 47.1 days, SD = 10.2; P = .023). CONCLUSION: Collaborative wound management with a WOC nurse resulted in a shorter hospital length of stay when compared to traditional management with WOC nurse involvement. Based on these findings, we assert that WOC nurses provide an important bridge between postoperative wound management in patients undergoing resection of subcutaneous sarcomas.

The clinical and economic burden of illness in the first two years after ostomy creation: a nationwide Danish cohort study.

BACKGROUND: Living with an ostomy is often associated with costly complications. This study examined the burden of illness the first two years after ostomy creation. METHODS: Data from Danish national registries included all adult Danes with an ostomy created between 2002 and 2014. RESULTS: Four cohorts consisted, respectively, of 11,385 subjects with a colostomy and 4,574 with an ileostomy, of which 1,663 subjects had inflammatory bowel disease (IBD) and 1,270 colorectal cancer as cause of their ileostomy. The healthcare cost was significantly higher for cases versus matched controls for all cohorts. In the first year, the total healthcare cost per person-year was €27,962 versus €4,200 for subjects with colostomy, €29,392 versus €3,308 for subjects with ileostomy, €15,947 versus €2,216 when IBD was the underlying cause, and €32,438 versus €4,196 when it was colorectal cancer. Healthcare costs decreased in the second year but remained significantly higher than controls. Hospitalization and outpatient services were primary cost drivers, with ostomy-related complications comprising 8-16% of hospitalization expenses. CONCLUSION: Compared to controls, subjects with an ostomy bear a significant health and financial burden attributable to ostomy-related complications, in addition to the underlying disease, emphasizing the importance of better ostomy care to enhance well-being and reduce economic strain.

Development of a leakage impact assessment for patients with a stoma, who may be impacted by leakage.

For people living with a stoma leakage is unpredictable. Despite advances in stoma products, leakage can lead to soiling and this, along with worrying about leakage, can significantly affect patients' everyday lives and impact their quality of life. It is also associated with excessive product use and increased healthcare resources. Leakage therefore remains a major unmet need for many people living with a stoma. To address this, Coloplast Ltd in collaboration with the authors and a broader group of stoma care nurses have worked together to develop a first version of the Leakage Impact Assessment. This assessment is intended to identify patients who struggle with leakage and leakage worry, and who might benefit from the reassurance that a new digital leakage notification system, Heylo™, can provide. This article reviews the evidence for leakage and its impact on people living with a stoma and outlines the development process for the assessment.

Mediação de saberes na sobrevivência ao câncer de laringe: a experiência de pessoas Laringectomizadas Totais / Mediation of knowledge in surviving laryngeal cancer: the experience of Total Laryngectomized persons / Mediación del conocimiento en la supervivencia al cáncer de laringe: la experiencia de las personas sometidas a Laringectomía Total

O presente estudo parte de reflexões acerca da sobrevivência ao câncer e da experiência estigmatizante vivenciada por pessoas diagnosticadas com câncer de laringe no Hospital Nacional do Câncer/Instituto Nacional do Câncer, submetidas à cirurgia de Laringectomia Total e participantes do Grupo de Laringec-tomizados Totais. O objetivo foi compreender as mediações de saberes e de informações produzidas pelos participantes do grupo na interface com os profissionais de saúde, considerando a sua dupla condição de estigma: o câncer e a deficiência. Parte-se de uma abordagem socioantropológica de caráter qualitativo e ex-ploratório que empregou os métodos de entrevista narrativa com cinco participantes. A análise foi realizada pelo método hermenêutico-dialético. Nos resultados destacam-se a busca pelo reconhecimento individual e social e a valorização da experiência frente aos saberes oficiais e o quanto as mediações extrapolam o espaço institucional. A mediação de saberes faz emergirem elementos significativos para o enfrentamento de uma cultura informacional dominante.

This study is based on reflections on surviving cancer and the stigmatizing experience of people diagnosed with laryngeal cancer at the Hospital Nacional do Câncer/Instituto Nacional do Câncer, who underwent Total Laryngectomy surgery and participated in the Total Laryngectomy Group. The goal was to understand the mediations of knowledge and information produced by the group participants, in the interface with health professionals, considering their double condition of stigma: cancer and disability. It is based on a socio-anthropological approach, of qualitative and exploratory nature that employed the narrative interview method with five participants. The analysis was carried out through the hermeneutic-dialectic method. The results highlight the search for individual and social recognition and the appreciation of experience in relation to official knowledge, and how the mediations go beyond the institutional space. The mediation of knowledge brings out significant elements to confront a dominant informational culture.

El presente estudio se basa en las reflexiones sobre la supervivencia al cáncer y la experiencia estigmatiza-dora de personas diagnosticadas de cáncer de laringe en el Hospital Nacional do Câncer/Instituto Nacional do Câncer, que se sometieron a una Laringectomía Total y participaron en el Grupo de Laringectomía Total. Objetivo: comprender las mediaciones de conocimiento e información producidas por los participantes del grupo, en la interfaz con los profesionales de salud, considerando su doble estigma: cáncer y discapacidad. Se basa en un abordaje socioantropológico, cualitativo y exploratorio, que utilizó métodos de entrevista narrativa con cinco participantes. El análisis ocurrió a través del método hermenéutico-dialéctico. Los resultados destacan la búsqueda de reconocimiento individual y social y la valorización de la experiencia en relación con el conocimiento oficial y la medida en que las mediaciones van más allá del espacio insti-tucional. La mediación del conocimiento pone de manifiesto elementos significativos sobre una cultura informacional dominante.