scholarly journals Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing

2020 ◽  
Vol 184 (2) ◽  
pp. 491-498
Author(s):  
Valerie Shilling ◽  
Susan Catt ◽  
Valerie Jenkins ◽  
Lesley Fallowfield
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Brca Mutation ◽  
Qualitative Interviews ◽  
Educational Communication ◽  
Communication Training ◽  
Training Materials ◽  
Educational Package ◽  
Wide Range ◽  
Framework Approach

Abstract Purpose As demand for genetic testing grows and a wide range of health care professionals (HCPs) are potentially involved in discussions about testing and delivering results, we developed an educational package to help HCPs with these conversations. Methods To inform the content of training materials, we conducted interviews with 11 women four of whom had BRCA1 and seven with BRCA2 mutations. Five women had or were currently receiving breast cancer treatment. Ages ranged from 38 to 77 years. Interviews were audio-recorded, transcribed verbatim and analysed using the Framework approach to thematic analysis. Results We identified 18 themes and 12 subthemes across the interviews, encompassed by six overarching themes: risk, decision-making, information and understanding, communication and improvement, accessing the system: process and frustration, emotional and social drivers. Conclusions The findings informed the didactic components of an educational communication workshop and a summary document for attendees. Qualitative interviews provide an important way of incorporating the patient perspective into communication training materials for HCPs by highlighting key issues that matter most to the patient.

scholarly journals Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study (Preprint)

2017 ◽  
Author(s):  
Svenja Litzkendorf ◽  
Tobias Hartz ◽  
Jens Göbel ◽  
Holger Storf ◽  
Frédéric Pauer ◽  
...  
Keyword(s):  
Health Care ◽  
Rare Diseases ◽  
Health Care Professionals ◽  
Information Needs ◽  
Qualitative Interviews ◽  
Quality Criteria ◽  
Quality Information ◽  
High Quality ◽  
Information Portal ◽  
High Quality Information

BACKGROUND Recently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, taking action to improve the life of those affected is gaining importance. In 2013, the federal government of Germany adopted a national action plan for rare diseases, including the call to establish a central information portal on rare diseases (Zentrales Informationsportal über seltene Erkrankungen, ZIPSE). OBJECTIVE The objective of this study, therefore, was to conduct scientific research on how such a portal must be designed to meet the needs of patients, their families, and medical professionals, and to provide high-quality information for information seekers. METHODS We chose a 3-step procedure to develop a needs-based prototype of a central information portal. In the first step, we determined the information needs of patients with rare diseases, their relatives, and health care professionals by means of qualitative interviews and their content-analytical evaluation. On the basis of this, we developed the basic structure of the portal. In the second step, we identified quality criteria for websites on rare diseases to ensure that the information linked with ZIPSE meets the quality demands. Therefore, we gathered existing criteria catalogs and discussed them in an expert workshop. In the third step, we implemented and tested the developed prototypical information portal. RESULTS A portal page was configured and made accessible on the Web. The structure of ZIPSE was based on the findings from 108 qualitative interviews with patients, their relatives, and health care professionals, through which numerous information needs were identified. We placed particularly important areas of information, such as symptoms, therapy, research, and advisory services, on the start page. Moreover, we defined 13 quality criteria, referring to factors such as author information, creation date, and privacy, enabling links with high-quality information. Moreover, 19 users tested all the developed routines based on usability and comprehensibility. Subsequently, we improved the visual presentation of search results and other important search functions. CONCLUSIONS The implemented information portal, ZIPSE, provides high-quality information on rare diseases from a central point of access. By integrating the targeted groups as well as different experts on medical information during the construction, the website can assure an improved search for information for users. ZIPSE can also serve as a model for other Web-based information systems in the field of rare diseases. REGISTERED REPORT IDENTIFIER RR1-10.2196/7425

scholarly journals A MOOC to disseminate key concepts related to the future challenges of the French health system

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
C You ◽  
V Lissillour ◽  
A Lefébure
Keyword(s):  
Public Health ◽  
Health Care ◽  
Health System ◽  
Health Care Professionals ◽  
Decision Makers ◽  
Teaching Staff ◽  
New Public Health ◽  
New Public ◽  
Wide Range ◽  
Public Health Challenges

Abstract Background The increase of life expectancy creates critical health needs that developed countries health systems have to deal with. They are also confronted to persistent health inequalities. A common vision of these issues may not be shared by the health care professionals, decision-makers and citizens. In the context of the launch of new public health laws in France, the French School of Public Health (EHESP) decided to offer a MOOC entitled “Public Health and Health System: transition and transformation” (2019). Objectives The MOOC intends to raise awareness and increase understanding of public health challenges. It is designed for a wide audience of professionals, decision-makers and citizens in the French speaking world. The content was designed by a multidisciplinary team of academics from the EHESP (N = 50) and a network of health professionals (N = 21). The 6 modules address major themes of the recent health policies, e.g. social and territorial inequalities in health, health care security, health pathways, innovation or health democracy. Results Over the course of 6 consecutive weeks, almost 7800 people have enrolled in this e-learning. They are provided with short teaching videos (109 capsules of 4-5’) and webinars, have access to a number of supplementary reading material and a variety of self-assessment. Active learning is enhanced via forum involving peers and teaching staff. The full course represents around 20 hours of teaching. So far, completion rate has attained 13% which compares well with usual rate for MOOCs. Participants include a wide range of professionals, students and citizens from 87 different countries (72% from France) and 50% had a master or higher degree. The overall satisfaction rate is 98%. Conclusions This MOOC attracted the attention of a wide and diverse audience regarding the major public health issues. Some public health agencies have expressed interest in implementing the MOOC into their professional development program of their staff. Key messages Health system reforms are constantly implemented to face new public health challenges. A multidisciplinary MOOC can help raise awareness and understanding of the issue being addressed by new policies.

scholarly journals Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study

2017 ◽  
Vol 32 (1) ◽  
pp. 23-35 ◽  
Author(s):  
Katherine Bristowe ◽  
Matthew Hodson ◽  
Bee Wee ◽  
Kathryn Almack ◽  
Katherine Johnson ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Qualitative Interviews ◽  
Historical Context ◽  
Service Level ◽  
National Study ◽  
Care Needs ◽  
Advanced Illness ◽  
Qualitative Interview Study ◽  
Lgbt People

Background: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness. Aim: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples. Design: Semi-structured in-depth qualitative interviews analysed using thematic analysis. Setting/participants: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer ( n = 21), non-cancer ( n = 16) and both a cancer and a non-cancer conditions ( n = 3). Results: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals’ preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness. Conclusion: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.

scholarly journals A critical frame analysis of the various perspectives on recent policy changes to refugee health care in Canada.

2021 ◽  
Author(s):  
Brittney Emslie
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Asylum Seekers ◽  
Federal Court ◽  
Policy Implications ◽  
Holistic View ◽  
Study Approach ◽  
Conservative Government ◽  
Wide Range ◽  
Refugees And Asylum Seekers

This paper explores the Federal Court of Appeal’s (FCA) decision from July 4, 2014 that opposed the changes to the Interim Federal Health Program that traditionally provided a wide range of health care coverage for refugees and asylum seekers in Canada. Using a case-study approach, I will explore the various perspectives, outline policy implications and analyze what changes still need to be made from both federal and provincial governments. I will argue that Canada’s current conservative government is using a neoliberal lens to justify their harsh, decision-making regarding this issue and it is an approach that disregards fundamental human rights. However, it is clear that the humanitarian approach that is used by both the advocates as well as Justice MacTavish is the most popular amongst refugees, asylum seekers, academics, health care professionals and many Canadian citizens who oppose these changes. In my analysis, I use both critical frame and discourse analysis to unpack the various perspectives on this debate and explain how the stakeholders have framed their argument to offer a holistic view for understanding this unprecedented court ruling.

scholarly journals Does Licensing of Health Care Professionals Improve Health Care?

2007 ◽  
Vol 93 (3) ◽  
pp. 13-19
Author(s):  
Randall G. Holcombe
Keyword(s):  
Health Care ◽  
Private Sector ◽  
Health Care Professionals ◽  
Brand Names ◽  
Regulatory Agencies ◽  
High Quality ◽  
Quality Health Care ◽  
Wide Range ◽  
Quality Health ◽  
High Quality Health Care

ABSTRACT If government licensing of health care professionals were eliminated, a wide range of private sector alternatives would emerge to replace current licensing systems. Some of those systems, such as private sector regulatory agencies and brand names, could play a large role in ensuring high-quality health care, and other mechanisms, such as board certification and hospital practicing privileges, already are in place. Non-governmental mechanisms to ensure high-quality health care would work better if all government restrictions on health care professionals were eliminated.

Setting limits in uneasy times – healthy diets in underprivileged families

2016 ◽  
Vol 12 (4) ◽  
pp. 225-237 ◽  
Author(s):  
Kia Ditlevsen ◽  
Annemette Nielsen
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Weight Control ◽  
Qualitative Interviews ◽  
Well Being ◽  
Small Sample ◽  
Preventive Action ◽  
Content Type ◽  
Parental Feeding ◽  
Migrant Families

Purpose The purpose of this paper is to provide knowledge on barriers to preventive action on early childhood overweight in non-western migrant families. It investigates the underlying understandings of the parental role in relation to weight control present in health-care professionals and in families. Design/methodology/approach The study is based on qualitative interviews with parents who are engaged in interventions aimed at helping them and their children to adopt a healthier life style, and on interviews with health-care professionals. Findings This study shows that the participating parents, all low SES and living under different forms of insecurity, perceived their parental task for the present as creating well-being for their children, and they were, therefore, reluctant to enforce dietary changes. The health-care professionals, in contrast, considered the need for change through a perspective on future risks. Research limitations/implications The results are based on a rather small sample and the link between insecurity, family dynamics and health practice needs further research. Originality/value The participating parents represented a group that is rarely included in scientific research and the study, therefore, contributes valuable knowledge on health behavior in ethnic minority families. The empirical analysis provides new insights for health professionals regarding the suitability of the universal model of parental feeding styles. It illuminates the implications of implicitly applying this model in health interventions which involve vulnerable categories of parents such as refugees to western societies.

scholarly journals The Use of Telerehabilitation Technologies for Cardiac Patients to Improve Rehabilitation Activities and Unify Organizations: Qualitative Study (Preprint)

2018 ◽  
Author(s):  
Birthe Dinesen ◽  
Helle Spindler
Keyword(s):  
Health Care ◽  
Community Of Practice ◽  
Health Care Professionals ◽  
Large Scale ◽  
Qualitative Interviews ◽  
Cardiac Patients ◽  
Long Term Effects ◽  
Interorganizational Cooperation ◽  
Health Care Centers

BACKGROUND Cardiovascular disease is a leading cause of death globally causing 31% of all deaths worldwide. The Danish health care system is characterized by fragmented delivery of services and rehabilitation activities. The Teledialog Telerehabilitation Program for cardiac patients was developed and tested to rectify fragmentation and improve the quality of care. The Teledialog program was based on the assumption that a common communication platform shared by health care professionals, patients, and relatives could reduce or eliminate the fragmentation in the rehabilitation process and improve cooperation between the health professionals. OBJECTIVE This study aimed to assess the interorganizational cooperation between health care professionals across sectors (hospitals, municipal health care centers) in a cardiac telerehabilitation program. METHODS Theories of networks between organizations, the sociology of professions, and the “community of practice” approach were used in a case study of a cardiac telerehabilitation program. A triangulation of data collection techniques were used including documents, participant observation (n=76 hours), and qualitative interviews with healthcare professionals (n=37). Data were analyzed using NVivo 11.0. RESULTS The case study of cooperation in an interorganizational context of cardiac telerehabilitation program is characterized by the following key themes and patterns: (1) integrated workflows via a shared digital rehabilitation plan that help integrate workflow between health care professions and organizations, (2) joint clinical practice showed as a community of practice in telerehabilitation developed across professions and organizations, and (3) unifying the organizations as cooperation has advanced via a joint telerehabilitation program across municipalities and hospitals. CONCLUSIONS The Teledialog Telerehabilitation Program was a new innovative cardiac program tested on a large scale across hospitals, health care centers, and municipalities. Assessments showed that the Teledialog program and its associated technologies helped improve interorganizational cooperation and reduce fragmentation. The program helped integrate the organizations and led to the creation of a community of practice. Further research is needed to explore long-term effects of implementation of telerehabilitation technologies and programs. CLINICALTRIAL ClinicalTrials.gov NCT01752192; http://clinicaltrials.gov/ct2/show/NCT01752192 (Archived by WebCite at http://www.webcitation.org/6yR3tdEpb)

Sign in / Sign up

Export Citation Format

Share Document