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“With This Disease, You Take Whatever Chances There Are”—A Study on Socio-Cultural and Psychological Aspects of Experiments Regarding Huntington’s Disease

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Open Journal of Medical Psychology 2016年第4期5卷 72-87页

作者： Susanne Lundin Eva Torkelson Marsanna Petersen Department of Arts and Cultural Sciences Lund University Lund Sweden Stellenbosch Institute for Advanced Studies (STIAS) Wallenberg Research Centre at Stellenbosch University Stellenbosch South Africa Department of Psychology Lund University Lund Sweden

Although relatively rare, Huntington’s disease (HD) has fatal consequences. There is no cure for the disease, which leads to an early death. Worldwide, scientists are trying to develop therapeutic methods that could cure the disease, including new molecular gene therapeutic methods. At Lund University, research on HD is now about to step from animal models to trials with humans. The project is special in its design since it involves both medical studies and socio-cultural and psychological research to explore and meet the many challenges that experimental trials with HD patients give rise to. The aim of the present study was to investigate the viewpoints of individuals affected by HD on the issues of participation and exerting influence if taking part in a medical study on gene therapy that has not previously been tested on humans. A total of 16 participants, recruited through the national association for HD and through the neurological clinic at Lund University in Sweden, took part in a focus group or in a survey study. A thematic analysis, to explore the transcribed text from the focus groups as well as from the written mail responses, was conducted by means of Nvivo, a program for qualitative data analysis. Results showed three main themes expressing reasons for participation: participation as a last resort, as an activity of hope, and as a way to take responsibility for the development of a cure that will benefit future generations. The responses relating to the question about affected individuals’ view of exerting influence resulted in two themes. The first theme was having a voice when researchers design experiments, which may give a sense of receiving respect. The second was that influence is an essential part of the information process before agreeing to take part in an experimental trail.

关键词： Huntington’s Disease Participation in Clinical Trials Influence focus groups Coping

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Talking about Height and Quality of Life: A Content-Analysis of focus Group Discussions with Short-Statured Children and Their Parents in the US

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Open Journal of Endocrine and Metabolic Diseases 2016年第11期6卷 229-241页

作者： Rachel Sommer Monika Bullinger Andreas Pleil Nelly Mauras Judith Ross Ron Newfield Janet Fox Julia Quitmann Department of Medical Psychology Center for Psychosocial Medicine University Medical Center Hamburg-Eppendorf Hamburg Germany Pfizer Inc. San Diego CA USA Nemours Children’s Clinic Jacksonville FL USA Thomas Jefferson University Philadelphia PA USA Rady Children’s Hospital San Diego CA USA University of San Diego San Diego CA USA

Background: To understand what life is like for US children with a diagnosis of Growth Hormone Deficiency or Idiopathic Short Stature, the impact of short stature on Health related Quality of Life (HrQoL) was qualitatively examined and needs for care from the young patients and their parents perspective were identified. Methods: focus group discussions with 26 American-English speaking and nine American-Spanish speaking children and their parents were conducted, transcribed verbatim and subsequently qualitatively analyzed by two independent raters, using an existing coding guideline, based on the multidimensional HrQoL concept and a special software (VERBI-Software MAXQDA 10). Results: A total of 1313 statements for the English-speaking and 447 statements for the Spanish-speaking families were categorized. In the US, the strongest frequency of mention was found for the HrQoL dimension “Social” across respondents, followed by “Treatment” and “Emotion”. Conclusion: Conducting and analyzing data generated from focus groups ensure that young patients’ experiences of disease are represented in the measure of outcomes for use in clinical trials and patient care.

关键词： Short Stature Quality of Life Children focus groups

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Improving Clinical Laboratory Quality through Reduction of Tests’ Turnaround Time in Democratic Republic of the Congo: Key Strategies

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Journal of Biosciences and Medicines 2021年第10期9卷 96-116页

作者： Chabo Byaene Alain Mabela Makengo Matendo Rostin Konde Nkiama Numbi Joël Muhindo Mavoko Hypolite Kayembe Nzongola-Nkasu Donatien Tanon Aristophane Koffi Muwonga Masidi Jérémie Situakibanza Nani-Tuma Hippolyte Department of Medical Biology University Hospital of Kinshasa Faculty of Medicine University of Kinshasa Kinshasa Democratic Republic of the Congo (DRC) Department of Mathematics and Informatics Faculty of Sciences University of Kinshasa Kinshasa Democratic Republic of the Congo (DRC) Department of Health and Environment Faculty of Medicine University of Kinshasa Kinshasa Democratic Republic of the Congo (DRC) Department of Tropical Medicine University Hospital of Kinshasa Faculty of Medicine University of Kinshasa Kinshasa Democratic Republic of the Congo (DRC) Department of Dermatology and Infectiology Faculty of Medical Sciences Félix Houphou&euml t Boigny University Abidjan-Cocody C&ocirc te d’Ivoire Department of Internal Medicine University Hospital of Kinshasa Faculty of Medicine University of Kinshasa Kinshasa Democratic Republic of the Congo (DRC)

In Democratic Republic of the Congo (DRC), the laboratory TAT is significantly very long and do not comply with either international standards or the suggestions of customers. However, there is neither a national nor a local strategy to improve the laboratory TAT. The aim of the present study is to develop practical management strategies to shorten clinical laboratory tests’ TAT. This was a qualitative study conducted in Kinshasa. focus groups and Lean tools were used respectively to generate a wide range of views from a variety of laboratory staff and to eliminate several form of waste in the laboratory flow process. Based on the identified root causes of delay, focus groups participants reported that there is a lot of scope for the improvement of TAT in DRC. Consistent attendance and punctuality are essential. The hospital management should implement the Laboratory Information Systems (LIS) and install Middleware. Total laboratory automation, inventory system for all reagents and supplies used in the laboratory, expansion of the sampling area, sufficient number of high-power machine and a clear job description are indispensable. LIS, 3.5 mL BD vacutainer BarricorTM tube and point-of-care testing (POCT) are necessary for workflow improvement. A reduction of 312 minutes was achieved by eliminating or decreasing non-value-added activities. Applying the suggested key strategies, and particularly the new workflow process, is a basis for improving the laboratory tests’ TAT. The algorithm presented can be easily implemented in other laboratories that face this type of problem.

关键词： Turnaround Time Quality Indicator Quality Improvement Clinical Laboratory focus groups Lean Management Quality Assurance Democratic Republic of the Congo

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Intensive Care Nurses’Experiences of Caring for Intubated Patients under Light Sedation:A Qualitative Study

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Open Journal of Nursing 2018年第7期8卷 473-484页

作者： Kajsa Backlund Karoline Persson Emina Hadziabdic Blekingesjukhuset KarlskronaSweden Department of Health and Caring Sciences Faculty of Health and Life SciencesLinnaeus UniversityVaxjoSweden

Introduction: Previous studies have shown that a light sedation level is beneficial for intubated patients in the Intensive care unit (ICU). Aim: This study aimed to describe intensive care nurses’ experiences of caring for intubated patients under light sedation. Methods: This study was an explorative descriptive qualitative study. Data were collected from 12 intensive care nurses by three focus group interviews and analyzed using qualitative content analysis. Findings: Five categories emerged from the data: 1) the importance of verbal communication and the nurses’ presence, 2) feelings of frustration and heavy workload, 3) assessment of patients’ pain and anxiety, 4) the nurses’ desire for the development of guidelines, and 5) being inspired by the care. Conclusion: The study found that intensive care nurses were positive towards light sedation care but the organization of care did not support them as the patients cared for with light sedation treatments demanded their physical presence at patients’ bed site.

关键词： Intensive Care Nurse Light Sedation Experiences Caring focus groups Qualitative Content Analysis

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Barriers and facilitators to mexican-american participation in clinical trials: physician and patient focus group perspectives

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Health 2010年第7期2卷 742-752页

作者： Jesse Nodora Tomas Nuno Ken O’Day Virginia Yrun Francisco Garcia National Center of Excellence in Women’s Health and the Arizona Cancer Center University of ArizonaTucsonUSA National Center of Excellence in Women’s Health and the Mel and Enid Zuckerman College of Public Health University of ArizonaTucsonUSA Xcenda Palm HarborUSA

Racial/ethnic minority populations are under- represented in clinical trials and Hispanic participation rates are particularly low. This study assessed barriers and facilitators to clinical trials participation by Medicaid eligible Mexican- Americans and their serving physicians. Qualitative data from two focus groups conducted among Mexican-American Medicaid eligible patients and four physician focus groups were analyzed. Mexican-American patients have a basic understanding of clinical trials. While most are open to participating in clinical research, not speaking English, time, and transportation were identified as barriers. Physicians believe that desperation and financial need are the primary patient motivators for participation. Barriers to physician recruitment and referral include: lack of information about clinical trials, concern that study participation may not be in the patient’s best interest, and lack of staffing and time to conduct trials. Ample opportunities exist to engage providers and patients in future efforts to increase Mexican-American patient recruitment into clinical trials.

关键词： Clinical Trials Participation Mexican-American Hispanic Medicaid Patients Medicaid Physicians focus groups Qualitative Methods

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