Improving disclosure of medical errors: Including patients and family members in the disclosure process

Over the last decade, adverse events and medical errors have become a main focus of interest for the standards of quality and safety in the U.S. healthcare system (Weinstein & Henderson, 2009). Particularly when a medical error occurs, the disclosure of medical errors and its practices have become a focal point of the healthcare process. Patients and family members who have experienced a medical error might be able to provide knowledge and insight on how to improve the disclose process. However, patient and family member are not typically involved in the disclosure process, thus their experiences go unnoticed. ^ The purpose of this research was to explore how best to include patients and family members in the disclosure process regarding a medical error. The research consisted of 28 qualitative interviews from three stakeholder groups: Hospital Administrators, Clinical Service Providers, and Patients and Family Members. They were asked for their ideas and suggestions on how best to include patients and family members in the disclosure process. Framework Analysis was used to analyze this data and find prevalent themes based on the primary research question. A secondary aim was to index categories created based on the interviews that were collected. Data was used from the Texas Disclosure and Compensation Study with Dr. Eric Thomas as the Principal Investigator. Full acknowledgement of access to this data is given to Dr. Thomas. ^ The themes from the research revealed that each stakeholder group was interested and open to including patients and family members in the disclosure process and that the disclosure process should not be a "one-way" avenue. The themes gave many suggestions regarding how to best include patients and family members in the disclosure process of a medical error. Secondary aims revealed several ways to assess the ideas and suggestion given by the stakeholders. Overall, acceptability of getting the perspective of patients and family members was the most common theme. Comparison of each stakeholder group revealed that including patients and family members would be beneficial to improving hospital disclosure practices. ^ Conclusions included a list of recommendations and measureable appropriate strategies that could provide hospital with key stakeholders insights on how to improve their disclosure process. Sharing patients and family members experience with healthcare providers can encourage a shift in culture where patients are valued and active in participating in hospital practices. To my knowledge, this research is the very first of its kind and moves the disclosure process conversation forward in a patient-family member inclusion direction that will assist in improving disclosure practices. Future research should implement and evaluate the success of the various inclusion strategies.^

Using Emotion to Foster Acceptance: A Treatment Approach for Family Therapists Working with Transgender Adolescents and their Families

Currently, there is limited research and clinical focus on family therapy with transgender adolescents. When an adolescent discloses his/her transgender identity to his/her family, the family can experience an array of emotions, such as fear, distrust, anger, and sadness, along with confusion and invalidating behavior that can threaten secure attachment among family members. The purpose of this paper is to present a family therapy treatment approach for therapists working with transgender adolescents that is both culturally sensitive to the needs of these families as well as based on a systemic family therapy model. Emotionally Focused Family Therapy (EFFT) is a systemic model that is grounded in attachment theory and focuses on using emotion as a key tool in restructuring problematic relational patterns and fostering more secure family bonds. Through the use of a hypothetical case study, this paper aims at illustrating how EFFT can help family members process feelings related to the transgender identity of an adolescent family member and restore their attachment in a manner that strengthens family relationships and bonds.

Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patients

Colorectal cancer is one of the most common invasive cancers, and is responsible for considerable physical and psychosocial morbidity. Understanding the quality of life experienced by colorectal cancer patients is essential for evaluating the full impact of the disease on individuals, their families and their communities. Patient perspective is essential in establishing a proper understanding of the quality of life of colorectal cancer patients. Despite this, few studies have employed a qualitative methodology to explore quality of life issues for colorectal cancer patients. A review of the literature identified only seven qualitative studies pertaining to quality of life issues for colorectal cancer patients, a surprising finding given the prevalence of this cancer. Accordingly, this study sought to build on the findings of previous qualitative research by providing descriptive data on the quality of life and psychosocial variables most salient to colorectal cancer patients. Six core themes emerged from interview and focus group data: Satisfaction with diagnosis and treatment; support (including information provision); quality of life; benefits of diagnosis; making sense of the cancer experience; and coping strategies. The information derived from this study will help inform the development of supportive care services to address the needs of the increasing number of people diagnosed with colorectal cancer. Copyright (c) 2005 John Wiley & Sons, Ltd.

Santeria as an Informal Psychosocial Support Among Latinas Living with Cancer

Among Latinos, Santería functions as both a religion and a health care system in occurrences of health versus illness within various Latino sub-groups in the U.S. This exploratory study offers a comprehensive analysis of the function of the folk healing tradition Santería as a culturally congruent informal mental health support that assists with coping with the psychosocial sequelae of living with cancer among Latinas in Miami-Dade County, FL. It (a) determined the attitudes of Latinas living with cancer towards Santería as an informal mental health support and (b) explored how Santería offers Latinas effective mental health support that assists in coping with the psychosocial sequelae of living with cancer. The mechanisms and characteristics underlying the motivations of Latinas living with cancer to seek and integrate this informal modality for their cancer care were identified. A purposive sample of 15 Latinas ages 18 and older in Miami-Dade County who had received a diagnosis of cancer were recruited from sites in Miami-Dade offering formal mental health support services and botánicas. Data collection incorporated in-depth interviews and a validation focus group. In an effort to generate theory through a modified Grounded Theory approach, data analysis was accomplished by means of multiple coding passes and the constant comparison method which resulted in higher levels codes that were grouped into three major themes: 1) Participants’ Experience with Folk Healers, 2) Influence of Santería on the Cancer Experience, and 3) Participants’ Experience with Conventional Healthcare and Mental Healthcare. Results illustrate how, among Latinas, the folk healing tradition of Santería co-occurs with professional medical and mental health treatment in what Arthur Kleinman defines as the popular sector, which identifies and sets the parameters for culturally acceptable forms of healthcare and mental health treatment options.

Impacto do cancro da mama: Mudanças em diferentes fases do ciclo de vida da mulher

Dissertação de Mestrado realizada apresentada no Instituto Superior de Psicologia Aplicada para a obtenção de grau de Mestre na especialidade de Psicologia Clínica

A experiência de Suporte Social em mulheres com cancro da mama

Dissertação de Mestrado apresentada ao Instituto Superior de Psicologia Aplicada para obtenção de grau de Mestre na especialidade de Psicologia Clínica.

Prognostic Factors in Patients with Malignant Salivary Gland Neoplasms in a Brazilian Population

Due to the difficulty of follow-up for long periods, information about the survival rates of malignant salivary gland tumors is deficient in the global scientific literature. This study was aimed at investigating the epidemiological profile and prognostic factors that might affect survival in patients with primary malignant salivary gland tumors in Brazil. Patients were investigated regarding histopathological subtypes, age, gender, anatomic localization, smoking and alcohol intake, tumor size, clinical stage, histological grade, recurrence, metastasis, and treatment on clinicopathological outcomes. Survival curves were generated using the Kaplan-Meier method, and both univariate and multivariate analyses were performed using the log rank test and Cox regression, respectively. A total of 63 cases were analyzed, females beingslightly predominant (50.8%), with ages ranging from 13 to 87 years. The most common diagnosis was adenoid cystic carcinoma and the most affected anatomical location was the parotid. Tumors were predominantly classified as stage I and high-grade at the diagnosis. The 5- and 10-year overall survival rates were 84.6% and 74.7%, respectively. Disease-free survival (DFS) rates were 71.6% (5 years) and 56.6% (10 years). Univariate analysis showed significant effects of tumor size and clinical stage on the DFS (P < 0.0001 for both), and Cox regression analysis confirmed clinical stage as an independent prognostic factor (P = 0.035). Our results highlight the relevance of clinical stage as an independent prognostic parameter for malignant salivary gland tumors.

Cytokine-related genes identified from the RIKEN full-length mouse cDNA data set

To identify novel cytokine-related genes, we searched the set of 60,770 annotated RIKEN mouse cDNA clones (FANTOM2 clones), using keywords such as cytokine itself or cytokine names (such as interferon, interleukin, epidermal growth factor, fibroblast growth factor, and transforming growth factor). This search produced 108 known cytokines and cytokine-related products such as cytokine receptors, cytokine-associated genes, or their products (enhancers, accessory proteins, cytokine-induced genes). We found 15 clusters of FANTOM2 clones that are candidates for novel cytokine-related genes. These encoded products with strong sequence similarity to guanylate-binding protein (GBP-5), interleukin-1 receptor-associated kinase 2 (IRAK-2), interleukin 20 receptor alpha isoform 3, a member of the interferon-inducible proteins of the Ifi 200 cluster, four members of the membrane-associated family 1-8 of interferon-inducible proteins, one p27-like protein, and a hypothetical protein containing a Toll/Interleukin receptor domain. All four clones representing novel candidates of gene products from the family contain a novel highly conserved cross-species domain. Clones similar to growth factor-related products included transforming growth factor beta-inducible early growth response protein 2 (TIEG-2), TGFbeta-induced factor 2, integrin beta-like 1, latent TGF-binding protein 4S, and FGF receptor 4B. We performed a detailed sequence analysis of the candidate novel genes to elucidate their likely functional properties.

A new proctoscope for transanal endoscopic operations

Transanal access is one of many currently used procedures for rectal cancer treatment. The techniques used for local excision include conventional transanal excision, posterior access, therapeutic colonoscopy and transanal endoscopic approaches. The aim of the present study was to present a new surgical proctoscope for the endoscopic transanal excision of rectal lesions. A cylindrical proctoscope with a diameter of 4 cm was devised and built. The end inserted into the anus has a bevelled aspect and rounded borders, allowing correct exposure of the anal lesion. The rectoscope is fixed to the anal border with surgical thread through perforations in the external end. A base screw holds a fibre-light which illuminates the operative field. Part of the equipment is a guide which is positioned inside the rectoscope on insertion into the anus. In operations utilizing this proctoscope, 17 adenomas, 25 adenocarcinomas, 1 carcinoid and 1 endometrioma were excised. The diameter of the lesions varied from 1 to 6 cm. The range of procedures that are possible with this new proctoscope are similar to those achieved with conventional techniques which, however, require more expensive equipment. Hence, the present study demonstrates that this newly devised low-cost proctoscope is an efficient tool for the transanal endoscopic excision of rectal lesions.

Swallowing outcomes following laryngectomy and pharyngolaryngectomy

Objectives: To determine the incidence of dysphagia (defined as the inability to manage a diet of normal consistencies) at hospital discharge and beyond 1 year post-surgery and examine the impact of persistent dysphagia on levels of disability, handicap, and well-being in patients. Design: Retrospective review and patient contact. Setting: Adult acute care tertiary hospital. Patients: The study group, consecutively sampled from January 1993 to December 1997, comprised 55 patients who underwent total laryngectomy and 37 patients who underwent pharyngolaryngectomy with free jejunal reconstruction. Follow-up with 36 of 55 laryngectomy and 14 of 37 pharyngolaryngectomy patients was conducted 1 to 6 years postsurgery. Main Outcome Measures: Number of days until the resumption of oral intake; swallowing complications prior to and following discharge; types of diets managed at discharge and follow-up; and ratings of disability, handicap, and distress levels related to swallowing. Results: Fifty four (98%) of the laryngectomy and 37 (100%) of the pharyngolaryngectomy patients experienced dysphagia at discharge. By approximately 3 years postsurgery, 21 (58%) of the laryngectomy and 7 (50%) of the pharyngolaryngectomy patients managed a normal diet. Pharyngolaryngectomy patients experienced increased duration of nasogastric feeding, time to resume oral intake, and incidence of early complications affecting swallowing. Patients experiencing long-term dysphagia identified significantly increased levels of disability, handicap, and distress. Patients without dysphagia also experienced slight levels of handicap and distress resulting from taste changes and increased durations required to complete meals of normal consistency. Conclusions: The true incidence of patients experiencing a compromise in swallowing following surgery has been underestimated. The significant impact of impaired swallowing on a patient's level of perceived disability, handicap, and distress highlights the importance of providing optimal management of this negative consequence of surgery to maximize the patient's quality of life.

Disordered eating behaviors: what about boys?

PURPOSE: To determine the characteristics specific to boys with disordered eating behaviors (DEB) and the general context in which these DEB occur. METHOD: Data were drawn from the SMASH02 database, a survey carried out among post-mandatory school students in Switzerland aged 16-20 years in 2002. Only males (N=3890) were included, and were classified into into one of four groups based on their level of concern about weight/food and on their eating behaviors, as follows: group 1: one concern without behavior (N=862); group 2: more than one concern without behavior (N=361); group 3: at least one behavior (N=798); and a control group (N=1869), according to previously validated items. Groups were compared for personal, family, school, experience of violence, and health-compromising behaviors variables on the bivariate level. All significant variables were included in a multinomial logistic regression using Stata 9 software. RESULTS: About one-half of the boys reported either a concern or unhealthy eating behavior. Compared with the control group, boys from the three groups were more likely to be students and to report a history of sexual abuse, delinquency, depression, and feeling fat. In addition, boys from group 3 were more likely to report a history of dieting, early puberty, peer teasing, having experienced violence, frequent inebriation, and being overweight. CONCLUSION: DEB concern adolescent males more frequently than thought and seem to be integrated in a general dysfunctional context, in which violence is predominant. Adolescent males also need to be screened for DEB. Moreover, prevention programs should target the increasing social and media pressure regarding boys ideal body shape and raise public consciousness about this phenomenon.

La construction de l’identité personnelle et sociale des jeunes parents lors de la fondation d'une famille

Cette étude a pour but spécifique de comprendre le processus de transformation et de construction de l’identité tant personnelle que sociale chez les jeunes parents suite à l’entrée en parentalité, et ce par l’impact qu’a l’événement (devenir parent) sur la perception de soi dans les diverses sphères de l’intime. Cette étude se distingue par son intérêt envers les jeunes couples qui ont grandi avec un modèle parental plus traditionnel, mais difficile à reproduire avec les changements sociaux, dont l'entrée des femmes sur le marché du travail. L'étude a été réalisé à l'aide d'entretiens semi-dirigés auprès de dix participants (cinq couples) répondant aux critères suivants: le couple de parents devait être hétérosexuel et vivre ensemble, les participants devaient être âgés entre 27 et 32 ans, leur premier enfant devait avoir entre 2 et 4 ans, ils devaient résider à l'extérieur de la métropole et au moins un des membres du couple devait avoir un diplôme universitaire. L'étude confirme l'idée que pour les pères, l'environnement familial est un agent motivateur dans l'idée de fonder leur propre famille, mais plusieurs vivent un choc quant au niveau de sacrifices nécessaires à faire en tant que parents. Toutefois, le choc identitaire le plus grand a été vécu par les femmes. Plusieurs d'entre elles ont ressenti une véritable confusion face aux différentes pressions sociales quant au rôle qu'elles ont à jouer en tant que mères ou travailleuses et ont ressenti de la culpabilité lorsqu'elles ont fait leur choix identitaire. C'est également le cercle social des femmes qui a été le plus modifié suite à l'arrivée de leur premier enfant, ces dernières s'entourant de collègues (femmes) qui vivent la même situation, tout en ayant moins de temps à offrir à leurs amis et familles suite à l'arrivée de l'enfant.

Graphic medicine from library to classroom

Introduction. Graphic medicine is defined as the use of comics in health sciences education and patient care. Graphic stories about personal experiences of illness from patients and their families can be used to illustrate distress, empathy and collaboration between family members and health professionals and thus give students a broader experience of disease. We present a collection of graphic novels and outline collaboration with professors from various faculties in order to use comics as teaching material in health sciences. Method. The university has health sciences faculties of Nursing, Medicine, Pharmacy, Dentistry, Veterinary Medicine and schools of Public Health, Optometry and Kinesiology. The Health Library is offering its patrons a collection of 40 comics mainly on the theme of patient and family illness experience. An ongoing survey gathers feedback from users; results will help us promote the collection. A librarian is working with professors from the facultiesof Nursing, Medicine and Pharmacy in order to integrate comics’ excerpts into e-learning modules for three health and social services interprofessional courses reaching more than 1000 students annually. Other courses teaching empathy and partnership with patients will be identified and professors will be approached to raise awareness of the collection’s potential as teaching material. Results. The collection has been available to patrons since October 2012. Survey responses collected so far are very positive and titles are regularly borrowed. The collection has been added as suggested reading in a physiotherapy course outline. Discussion. The comics’ collection is already widely used by our patrons. Steps are being taken to integrate the collection into more health sciences courses and thus define graphic medicine as teaching material in health sciences education at the university.

El duelo en la familia del paciente oncológico : de las características a la intervención cognoscitivo comportamiental

Esta revisión tuvo como objetivo realizar una exploración en la literatura sobre el proceso de duelo en la familia del paciente con Cáncer, desde una perspectiva cognoscitivo comportamental. Se muestran las emociones, las cogniciones y las conductas experimentadas por las familias durante el curso de la enfermedad; se describe el proceso de duelo de acuerdo al ciclo vital y familiar, los tipos de duelo que pueden surgir, los factores que contribuyen al desarrollo de un duelo normal o un duelo complicado, las estrategias y técnicas de intervención del duelo desde la perspectiva cognoscitivo conductual, programas de intervención específicos para el asesoramiento del duelo en familias de pacientes con enfermedad crónica e, intervenciones cognoscitivo comportamentales para el manejo del duelo familiar. Se concluye que el cáncer es una enfermedad que afecta significativamente la vida del paciente y de su familia, durante la enfermedad y después de la muerte. A pesar de esto la atención psicológica prestada a las familias suele ser insuficiente. El enfoque cognoscitivo comportamental ha creado protocolos para ayudar a la familia durante el proceso oncológico.

Actitudes hacia el VIH/SIDA, el cáncer y la enfermedad de Alzheimer

Esta revisión de la literatura tuvo como objetivo describir las actitudes hacia el VIH/SIDA, el cáncer y la Enfermedad de Alzheimer desde el modelo tripartito. Se revisaron 109 artículos publicados entre 2005 y 2015 en algunas bases de datos especializadas y herramientas de análisis de impacto. También se incluyeron fuentes secundarias ampliándose la búsqueda a los últimos 20 años (1995-2015). Los resultados mostraron que la mayoría de los estudios realizados sobre las actitudes hacia estas tres enfermedades son de tipo cuantitativo y la información se analizó con base en los componentes del modelo tripartito. Algunos aspectos sociodemográficos como el sexo y la edad están asociados con las actitudes hacia las tres enfermedades y predominan las creencias erróneas sobre ellas respecto a sus causas, curso y tratamiento. También predominan actitudes negativas hacia las tres enfermedades y las conductas e intenciones conductuales son diversas hacia cada una de ellas. No se hallaron antecedentes empíricos del estudio de la estructura de las actitudes propuesta por el modelo tripartito hacia las tres enfermedades. La Salud Pública ha liderado la investigación con base en el modelo de conocimientos, actitudes y prácticas propuesto por la OMS.