병원의 윤리풍토와 간호사의 임상수행능력, 비판적 사고성향이 윤리적 의사결정 자신감에 미치는 영향

박슬기 동국대학교 일반대학원 2022 국내석사

본 연구는 병원의 윤리풍토, 간호사의 임상수행능력, 비판적 사고성향이 윤리적 의사결정 자신감에 미치는 영향을 확인하여 병원의 윤리적인 근무환경 조성과 간호사의 윤리적 의사결정 능력 향상을 위한 중재개발의 기틀을 마련하고자 시도되었다. 연구대상자는 U광역시에 소재하는 2개 종합병원에 재직 중인 임상경력 1년 이상의 간호사 200명을 대상으로 하였다. 자료수집 기간은 2021년 11월에서 2021년 12월이었으며, 수집된 자료는 SPSS/WIN 25.0 프로그램을 이용하여 빈도와 백분율, 평균과 표준편차, t-test, ANOVA, Scheffé test, Pearson Correlation Coefficient, Multiple Regression으로 분석하였다. 주요 연구의 결과는 다음과 같다. 1. 간호사의 일반적 특성에서 여성이 92.0%, 연령은 평균 30.50±6.77세였으며, 최종학력이 ‘전문학사’인 군이 29.5%였으며, ‘학사 이상’인 군이 70.5%였다. 임상적 특성에서 한국간호사 윤리강령을 ‘알고 있는’군이 58.5%였으며, 윤리교육 경험이 ‘있는’군은 69.5%이었다. 윤리교육을 받은 시기로는 ‘대학과정’이 76.4%, ‘직장’이 32.1%, ‘기타’가 5.0%로, 절반 이상의 간호사들이 대학교육 과정에서 윤리교육을 받았다고 응답하였다. 2. 병원의 윤리풍토는 5점 만점에 평균 3.53±0.43점으로 나타났다. 각 하위영역별 점수는 ‘동료와의 관계’ 평균 3.92±0.47점, ‘관리자와의 관계’ 평균 3.80±0.53점, ‘환자와의 관계’ 평균 3.60±0.49점, ‘병원과의 관계’ 평균 3.24±0.59점, ‘의사와의 관계’ 평균 3.27±0.62점이었다. 일반적 특성 및 임상적 특성에 따른 병원의 윤리풍토는 직위(F=4.13, p=.017), 한국간호사 윤리강령 인지여부(t=.291, p=.004)에서 유의한 차이가 있었다. ‘수간호사’(3.91±0.24)인 군이 ‘책임간호사’(3.52±0.41)와 ‘일반간호사’(3.51±0.44)인 군보다, 윤리강령을 ‘알고 있는(3.61±0.42)’군이 ‘잘 모르는(3.43±0.43)’군보다 병원의 윤리풍토를 높게 지각하였다. 3. 간호사의 임상수행능력은 5점 만점에 평균 3.96±0.43점으로 나타났다. 각 하위영역별 점수는 ‘업무태도’ 평균 3.80±0.43점, ‘업무지식’ 평균 3.56±0.47점, ‘간호윤리’ 평균 4.11±0.52점, ‘업무수행’ 평균 4.01±0.55점이었다. 일반적 특성과 임상적 특성에 따른 임상수행능력은 나이(F=4.57, p=.011), 한국간호사 윤리강령 인지여부(t=3.08, p=.002), 윤리교육 경험(t=2.47, p=.014)에 따라 유의한 차이가 있었다. ‘40세 이상’(4.18±0.30)인 군이 ‘30세 미만’(3.90±0.44)인 군보다, 윤리강령을 ‘알고 있는’(4.04±0.41)군이 ‘잘 모르는’(3.85±0.43)군보다, 윤리교육 경험이 ‘있는’(4.01±0.42)군이 ‘없는’(3.85±0.42)군보다 임상수행능력이 높게 나타났다. 4. 간호사의 비판적 사고성향은 5점 만점에 평균 3.62±0.40점이었다. 각 하위영역별 점수는 ‘지적열정 및 호기심’ 평균 3.87±0.55점, ‘신중성’ 평균 3.37±0.55점, ‘자신감’ 평균 3.42±0.67점, ‘체계성’ 평균 3.39±0.69점, ‘지적 공정성’ 평균 3.97±0.49점, ‘건전한 회의성’ 평균 3.47±0.87점, ‘객관성’ 평균 3.78±0.56점이었다. 일반적 특성과 임상적 특성에 따른 비판적 사고성향은 종교(t=2.84, p=.039), 부서(F=3.35, p=.037), 한국간호사 윤리강령 인지여부(t=2.15, p=.033)에 따라 유의한 차이가 있었다. 종교가 ‘있는’(3.75±0.44)군이 ‘없는’(3.57±0.37)군보다, 부서가 ‘특수부서’(3.73±0.38)인 군이 ‘병동’(3.58±0.38)인 군보다, 윤리강령을 ‘알고 있는’(3.67±0.37)군이 ‘잘 모르는’(3.55±0.43)군보다 임상수행능력이 높게 나타났다. 5. 간호사의 윤리적 의사결정 자신감은 5점 만점에 평균 3.63±0.54점이었다. 일반적 특성과 임상적 특성에 따른 윤리적 의사결정 자신감은 한국간호사 윤리강령 인지여부(t=3.77, p<.001), 윤리교육 경험(t=2.10, p=.037)에서 유의한 차이가 있었다. 윤리강령을 ‘알고 있는’(3.74±0.53)군이 ‘잘 모르는’(3.46±0.51)군보다, 윤리교육 경험이 ‘있는’(3.68±0.55)군이 ‘없는’(3.51±0.49)군보다 윤리적 의사결정 자신감이 높았다. 6. 병원의 윤리풍토, 간호사의 임상수행능력, 비판적 사고성향, 윤리적 의사결정 자신감 간의 상관관계를 분석한 결과, 윤리적 의사결정 자신감은 병원의 윤리풍토(r=.35, p<.001), 임상수행능력(r=.53, p<.001), 비판적 사고성향(r=.49, p<.001)과 통계적으로 유의한 양의 상관관계를 나타냈다. 7. 간호사의 윤리적 의사결정 자신감에 영향을 주는 요인을 확인하기 위해 다중회귀분석을 실시한 결과, 임상수행능력(β=.31, p<.001)이 가장 크게 영향을 미치는 것으로 나타났고, 그 다음으로는 비판적 사고성향(β=.25, p=.001), 한국간호사 윤리강령의 인지(β=.14, p=.033)순이었다. 이들 요인은 간호사의 윤리적 의사결정 자신감을 32.8% 설명하는 것으로 나타났다. 이상의 연구결과를 토대로 간호사의 윤리적 의사결정 자신감을 향상시키기 위해 임상수행능력과 비판적 사고성향을 높일 수 있는 전략개발이 필요하며, 체계적이고 실용적인 교육이 이루어질 수 있도록 다양한 프로그램의 개발과 반복연구가 필요할 것으로 판단된다. The purpose of this study was to analyze the effects of hospital ethical climate, nurses' clinical competency and critical thinking disposition on their ethical decision-making confidence, and thereby, arrange some intervention development framework for creation of the ethical working environment of the hospital and improvement of nurses' decision-making confidence. For this purpose, the researcher sampled 200 nurses who had worked for more one year at two general hospitals located in 'U' metropolitan city. The data were collected for the period from Nov. 2021 through Dec. 2021. The data collected thus were processed using the SPSS/WIN 25.0 program for frequency, percentage, means, SDs, t-test, ANOVA, Scheffé test, Pearson Correlation Coefficient and Multiple Regression. The results of this study are as follows. 1) As for the general characteristics of participants, females were 92.0%, the average age was 30.50±6.7, 29.5% of them graduated from college, while 70.5% graduated from university or higher. 58.5% of the them were 'aware’ of the code of ethics for nurses, and 69.5% of them had been educated on nurses' ethics. 76.4% of them had been educated on nurses' ethics at 'university', while 32.1% of them had been educated at the 'workplace', and 5.0% of them had been educated at ‘other places’. 2) The average of hospital ethical climate was 3.53±0.43 out of 5-point. For sub-scales, 'peers' scored 3.92±0.47, 'managers' 3.80±0.53, 'patients' 3.60±0.49, 'hospital' 3.24±0.59, and 'physicians' scored 3.27±0.62. Differences in hospital ethical climate according to demographic and clinical characteristics were statistically significant at; positions (F=4.13, p=.017) awareness code of ethics for nurses (t=.291, p=.004). 3) The average of nurses' clinical competency was 3.96±0.43 out of 5-point. For sub-scales, 'attitude' scored 3.80±0.43, 'knowledge' 3.56±0.47, 'ethics' 4.11±0.52, and 'performance' scored 4.01±0.55. Differences in clinical competency according to demographic and clinical characteristics were statistically significant at; age (F=4.57, p=.011), awareness code of ethics for nurses (t=3.08, p=.002), and experience of ethics education (t=2.47, p=.014). 4) The average of nurses' critical thinking disposition was 3.62±0.40 out of 5-point. For sub-scales, 'intellectual eagerness/curiosity' scored 3.87±0.55, 'prudence' 3.37±0.55, 'self-confidence' 3.42±0.67, 'systemicity' 3.39±0.69, 'intellectual/fairness' 3.97±0.49, 'healthy skepticism' 3.47±0.87, and 'objectivity' scored 3.78±0.56. Differences in critical thinking disposition according to demographic and clinical characteristics were statistically significant at; religion (t=2.84, p=.039), department (F=3.35, p=.037), and awareness code of ethics for nurses (t=2.15, p=.033). 5) The average of nurses' ethical decision-making confidence was 3.63±0.54 out of 5-point. Also, Difference in ethical decision-making confidence according to demographic and clinical characteristics; awareness code of ethics for nurses (t=3.77, p<.001) and experience of ethics education (t=2.10, p=.037). 6) The nurses’ ethical decision-making confidence showed positively correlations with hospital ethical climate (r=.35, p<.001), clinical competency (r=.53, p<.001) and critical thinking disposition (r=.49, p<.001). 7) Factors affecting nurses' ethical decision-making confidence were clinical competency (β=.31, p<.001), critical thinking disposition (β=.25, p=.001) and awareness code of ethics for nurses (β=.14, p=.033). These factors explained about 32.8% of nurses' ethical decision-making confidence. Based on the above results, it is necessary to develop strategies enhancing clinical competency and critical thinking disposition to improve ethical decision-making confidence of nurses, and it is also judged necessary that diversified programs and future studies will be followed up to provide systematic and practical education.

Instruments of Power: The Opioid Risk Tool, Foucault, and the Values Assessment Approach

Buckner, Francine ProQuest Dissertations & Theses University of Wash 2023 해외박사(DDOD)

The clinical encounter between the clinician and the patient is the central, pivotal node of the healthcare domain. As such, there is a significant ethical onus on the clinician to assure that the practices they use during this encounter are in alignment with their ethical commitments to their patients. Most practices undergo either a formal or an informal validation procedure, and sometimes those validation procedures neglect or under-emphasize the role of ethics and of potential unintended consequences (Messick, 1989). Even practices that were validated in good faith and according to accepted standards may cause patient harm. Samuel Messick has stated that the validity of a practice depends as much on its ethical impact and the potential negative consequences it may incur as it does on its quantification and that these aspects are often neglected (Messick, 1989). This project is underpinned methodologically by Michel Foucault's problematization approach (Foucault, 1990, 1995) and applies it to a widely accepted clinical practice called the Opioid Risk Tool (ORT) (Webster & Webster, 2005). The ORT is used as a critical case (Flyvbjerg, 2006; Yin, 2011) to show how problematization can critically interrogate a practice in ways that reveal some of its tacit biases and possibilities for causing patient harm that thus may pose potential ethical conflicts for the clinician. Problematizing the ORT then leads to the creation of the Values Assessment Approach (VAA) as a way to problematize other proposed clinical practices. The VAA is a novel approach that can offer clinical communities the opportunity to critically assess any proposed practice in a democratic and deliberative way in order to determine whether that practice is in alignment with the ethical commitments of the clinician community and what to do if ethical misalignments are revealed through applying this process.

더 나은 연구를 위한 연구윤리자문서비스

이은경 연세대학교 보건대학원 2020 국내석사

The purpose of this study was to review previous literatures for the status of the Research Ethics Consultation Services(RECS) in USA clinical institutional since the early 2000s and was to conduct the survey activity for expertises, IRB members (scientific and non-scientific), IRB administrators, researchers who are not active in IRB, clinical trial coordinators, bio ethicists, and other related expertises in clinical research fields in South Korea for Identifying the current status of ethical conflict issues, types, and solutions, and confirming their needs for RECS, and finding out what elements are necessary for operating Korean RECS. In addition, based on this, this study was proposed a model of the direction for undertaking South Korean RECS. For the survey, data collection was conducted from March 24th, 2020 to May 23rd, 2020 by randomly sending emails or SMS with the link of Google online survey from the above mentioned the related groups. As a result, 63.3% among all research participants answered that they had experienced ethical problems at least once within one year in research performances. For the types of ethical issues, 24.4% of the type of issues of consent and decision making ability, 24% of recruiting of research participants, 17.1% of protecting personal information, 21.7% of research participants` representative, and 8.8% of issues of research mediation were taken. For the solution against ethical issues, 47.1% of consulting with IRB, 35% of consulting with fellow researchers, 22.2% of consulting with the regulator and 12.7% of finding references were responded. For the question of the awareness of RECS, 70.3% were responded that they did not know about this service. Regarding the needs of this service, 90.6% were answered it is really necessary for preventing and solving the ethical issues in clinical research areas. Therefore, It presented what the functions, characteristics, and the operating elements of RECS and who consultants are satisfied. Furthermore, it proposed the model of direction for operating RECS. 본 연구는 임상연구에 관련 종사자 IRB 위원(과학계, 비과학계), IRB 행정간사, IRB에 활동하지 않은 연구자, 임상시험코디네이터, 생명윤리전문학자, 기타 관련 종사자들을 대상으로 임상연구 수행 과정 시 경험하는 윤리적 갈등의 이슈, 종류, 해결방법 등의 현황을 파악하고, 임상연구 관련 종사자로서 그들의 연구윤리자문서비스(Research Ethics Consultation Service, RECS)의 요구에 대한 설문조사를 통하여 확인하고, 우리나라형 연구윤리자문서비스의 운영 방향 및 운영에 필요한 요소가 무엇인지를 선행 문헌고찰에서 찾아보고자 하였다. 또한, 이를 토대로 우리나라형 연구윤리자문서비스의 운영 방향을 사회변화모델 이론으로 제언하였다. 설문조사는 2020년 3월 24일부터 2020년 5월 23일까지 무작위로 온라인 설문 링크를 포함한 이메일 또는 SMS를 이용하여, 공식적으로 공개된 연구 관련 종사자의 이메일 주소로 설문을 시행하였다. 설문결과, 전체 연구대상자의 63.3%가 연구수행, 연구심의, 연구관리 등에 있어서 1년 이내에 적어도 1번 이상 윤리적 문제를 경험하였다고 응답하였고, 윤리적 이슈의 종류로는 연구대상자의 동의 및 의사결정능력 53명(24.4%), 연구대상자 모집 48명(24%), 개인정보보호 37명(17.1%). 연구대상자 대리인 관련 47명(21.7%), 중재 관련 19명(8.8%), 진실 알리기 9명(4.1%)으로 조사되었고, 이에 따른 해결방법은 기관 IRB에 문의한다. 89명(47.1%), 동료연구자와 상의한다. 42명(22.2%), 규제기관에 문의한다. 34명(18.0%), 참고문헌을 찾는다. 24명(12.7%) 순으로 해결하고 있었다. 본 연구에서 중점적으로 다루고자 하는 연구윤리자문서비스에 대한 인식은 본 서비스에 대해 잘 모르는 것으로 90명(70.3 %)이 응답하였다. 이에 대한 도입에 대하여 필요하다./ 매우 필요하다. 90.6%가 응답하여 임상연구환경에 있는 연구종사자들이 연구윤리자문서비스가 필요하다고 생각하고 있음을 알 수 있었다. 이에 본 연구에서는 미국에서 2000년 초반에 처음 도입되어 NIH clinical center를 중심으로 각 대학의 의과학연구 수행기관에 연구윤리자문서비스 운영에 대한 선행연구의 문헌고찰을 통하여 연구윤리자문서비스 정의, 기능, 운영 방향, 운영요소와 상담가가 갖추어야 할 특성과 자질, 우리나라형 연구윤리자문서비스의 운영 방향의 모델을 제시하였다. 연구윤리자문서비스의 기능은 연구수행의 모든 단계에서 일어날 수 있는 윤리적 이슈들을 사전에 대비 및 해결하고, 상담 정보 기록의 축적으로 데이터화 및 표준화 정립, 동의서 및 위험과 이익 관련 사항에 대한 IRB 자문요청 등 IRB를 도와 해결되지 않았던 윤리적인 이슈들을 같이 고민과 해결, 발생할 수 있는 윤리적 이슈에 대하여 연구자와 연구윤리자문서비스의 전문가와 심도 있게 토론 및 해결하는 기회뿐 아니라, 소통과 토론을 통하여 자발적이고 자연스럽게 연구윤리, 간과할 수 있는 규제 등에 대한 정보를 익힐 수 있는 교육의 기능 및 환경을 제공할 수 있다.

Moral Distress and Ethical Climate in Pediatric Nurses in the Time of COVID

Soriano, Katherine Bliss Seton Hall University ProQuest Dissertations & The 2022 해외박사(DDOD)

Moral Distress in an increasing problem in nurses and other healthcare professionals due to the many challenges nurses face in proving care to their patients and families. These challenges can be magnified when the nurse is conflicted and unable to successfully navigate the moral and ethical responsibilities of the profession leading to moral distress. The COVID-19 pandemic has had profound and global widespread consequences including the impact on pediatric nurses. This descriptive correlational study examined the relationship between moral distress and ethical climate among pediatric nurses who cared for patients during the COVID-19 pandemic. This study used Corely’s Theory of Moral Distress as the theoretical background to examine this relationship. The sample consisted of 81 pediatric inpatient nurses from across the US that were recruited by two professional organizations. All participants completed the Measure of Moral Distress – Healthcare Professionals (MMD-HP) the Hospital Ethical Climate Survey (HECS) and a demographic data collection tool developed by this researcher. The results of this study found a statistically significant inverse relationship between moral distress and perceived ethical climate among the study participants. Other demographic data information was analyzed and there were no significant findings for years of experience, type of education, and type of unit setting. However, there were statistically significant findings for those participants who stated they were considering leaving their position due to moral distress and those that were not, as well as those who stated they received adequate training to COVID-19 patients and those who stated they did not.This is the first known study to investigate the relationship between moral distress and perceived ethical climate in pediatric nurses who cared for patients during the COVID-19 pandemic. Since the end of the COVID-19 pandemic is not fully in sight, findings of this study will help bring awareness to this issue and promote improving an ethical climate in order to mitigate the feelings of moral distress. This is of paramount importance to mitigate the negative consequence of moral distress among pediatric nurses.

The Body Commodified as Nature: Capitalism and the Biotechnological Turn

Pyles, Micah A University of Colorado at Boulder ProQuest Dissert 2022 해외박사(DDOD)

Recent decades have seen rapid technological innovation and development in the life science industries, which have facilitated the increasing exploitation of human biological materials, information, and in-vivo processes as sources of commodifiable value. These developments have, in turn, spurred a new body of social science research in which the commercial, legal-ethical, and property rights implications of bodily commodification are intensely analyzed and debated. Within this literature, “bioeconomy” scholars argue that experimental subjects, and others from whom biological value is extracted, should be understood to engage in a novel form of “embodied,” “regenerative,” or “clinical” labor, with those who perform this labor constituting “an extensive yet unacknowledged labor force.”This dissertation departs from the above line of thought by investigating how new biopharmaceutical and biotechnological advances are radically transforming the long-understood role of human bodies in economic production. More specifically, this study problematizes the concept of embodied, regenerative, and clinical labor, drawing attention to the various ways in which human bodies are now actively incorporated as key sites and resources in the production of human-derived biocommodities. In this context, it establishes that the bodies of human test subjects, and others from whom in-vivo biological value is extracted, cannot be understood to engage in any meaningful form of self- or object-directed labor, but rather constitute the very objects upon which others’ exploited labor is enacted – a fact that transforms the human body from a source of value creation via its status as labor to a source of value creation via its status as nature.Upon establishing the importance of this historically unprecedented shift, this study advances a theoretical reconceptualization of the human body as natural capital. To demonstrate the validity and significance of this reconceptualization, it presents an extended case study analysis of the U.S. biopharmaceutical industry, its mass medicalization of U.S. society, and the increasingly normalized practice of clinical trial outsourcing to less developed nations. The findings of this research suggest that within the biopharmaceutical industry, humans are increasingly being used as natural capital and that this form of bodily utilization is highly disproportionate to structurally disadvantaged populations around the world.

임상간호사의 환자안전문화인식, 윤리적 풍토, 조직의사소통이 환자안전간호활동에 미치는 영향

유수연 경상국립대학교 대학원 2022 국내석사

목적 : 본 연구는 임상간호사를 대상으로 환자안전문화인식, 윤리적 풍토, 조직의사소통이 환자안전간호활동에 미치는 영향을 파악하기 위한 서술적 상관관계 연구이다. 방법 : 연구 대상자는 J시 G대학병원, Y시 종합병원에 근무하는 임상간호사로서 자료수집기간은 2022년 3월 25일부터 3월 30일까지이며, 자가 보고식 설문지를 이용하여 총 172부의 설문지가 최종 분석되었다. 수집된 자료는 SPSS/WIN 25.0 program을 이용하여 분석하였으며, 1) 대상자의 일반적 특성을 빈도와 백분율, 평균과 표준편차로 분석하였다. 2) 환자안전문화인식, 윤리적 풍토, 조직의사소통, 환자안전간호활동을 빈도와 백분율, 평균과 표준편차로 분석하였다. 3)대상자의 일반적 특성이 따른 환자안전문화인식, 윤리적 풍토, 조직의사소통, 환자안전간호활동은 t-test, one-way ANOVA로 분석하고 사후검정은 Scheffé test를 이용하였다. 4)대상자의 환자안전문화인식, 윤리적 풍토, 조직의사소통, 환자안전간호활동 상관관계는 Pearson’s correlation coefficient로 분석하였다. 5) 대상자의 환자안전간호활동에 영향을 미치는 요인을 파악하기 위해 위계적 다중회귀분석(Hierarchical multiple regression analysis)을 이용하여 분석하였다. 결과: 환자안전간호활동에 영향을 미치는 요인은 학력(β=.19, p=.012), 총임상경력(β=-.24, p=.010), 환자안전문화인식(β=.26, p=.003), 윤리적 풍토(β=.28, p=.015)였고, 변인들의 총 설명력은 22.9%였다. 결론 : 환자안전문화인식을 향상시키기 위해 환자안전과 관련된 체계적인 직무교육 및 반복적인 병원 자체교육이 필요하다. 또한 올바른 윤리적 풍토를 위해 병원에서 발생한 갈등이 회피되지 않고 함께 의논하는 노력이 중요하다. Purpose : This study is to investigate the effects of clinical nurses' perception of patient safety culture, ethical climate, and organizational communication on patient safety management activities. Method : This study was conducted with 172 participating nurses working in a university hospital and a secondary hospital. Data collection was performed between 25 March 2022 and 30 March 2022. Data analysis was conducted descriptive statistics, independent samples t-test, one-way ANOVA, and hierarchical regression analysis. Result : Factors affecting patient safety management activities were educational background (β=.19, p=.012), total clinical experience (β=-.24, p=.010), and patient safety culture perception (β=.26, p=.003) and ethical climate (β=.28, p=.015). The total explanatory power of the variables was 22.9%. Conclusion : To improve patient safety, patient safety culture perception must be increased through systematic and continuous education. Furthermore, a non-punitive ethical climate that not only encourages related activities but also honestly communicates patient safety issues is essential.

임상윤리와 결의론에 관한 연구

이일학 연세대학교 대학원 2010 국내박사

본 논문은 생명윤리학의 의사결정에 사용되는 주요한 방법론 중 결의론의 타당성을 입증하고 실제 사례에 대한 의사결정에 활용되는 방식을 제시하는 것을 목적으로 하였다. 이를 위해 생명윤리학의 주요한 과제와 이에 따른 생명윤리학의 분화를 검토하고, 그 중 특히 임상윤리학에 대한 관심이 필요함을 제시하였다. 생명윤리학은 임상현장이라는 구체적인 현실에서 발생하는 문제에 주목함으로써 발전하게 되었다. 의학지식과 기술이 발전하게 되어 이전에는 치료를 포기하였을 상태에 처한 환자를 치료할 수 있게 되자 이들 환자에 대한 정의로운 대우가 관심을 끌게 되었다. 한편 사회가 다원화 되어 의료에 대한 개인의 요구가 상호 충돌하게 됨으로써 의료행위와 관련된 의사결정을 복잡해졌다. 이런 복잡한 상황에서 의사결정의 윤리성을 보장하고 실천을 담보하기 위한 노력의 하나로 등장한 윤리적 접근법이 생명윤리학(bioethics)이다. 생명윤리학자들은 철학적, 법적 논의를 통해 이 학문이 내적으로 합리성을 갖추는 동시에 임상현장에서 실천될 수 있도록 노력해왔다. 응용윤리학의 하나로서 생명윤리학은 구체적인 임상사례의 의사결정에서는 몇 가지 방법론을 시도하고 있다. 개념과 가치를 다루는 분야로서 임상윤리학은 철학적 방법론에 의존할 수 밖에 없으며, 의사결정과정에서 주요하게 사용된 방법론을 비판적으로 수용할 필요가 있다. 임상윤리학에서 주로 활용된 방법론인 원칙주의(principlism), 반성적 평형(reflective equilibrium) 등은 사례의 구체적인 문제점을 해결하는데 한계를 지니고 있으며 도덕적 판단의 대부분은 이전의 경험과 판단을 근거로 추론하는 결의론적 판단이다. 결의론적 판단을 활용하는 것은 실천적 측면에 집중하는 것이지만 실천에 영향을 미치는 심리적, 사회적 요인을 확인하고 이들의 부정적인 영향이 존재하게 된다. 임상윤리학은 철학적 고찰뿐 아니라 경험적인 연구를 적극적으로 수용함으로써 이를 극복하려 하였다. 이런 경험적인 연구를 수용하는 방식으로서 결의론은 사례를 바탕으로 판단을 내리고 축적된 경험을 통해 일반화 가능한 지식을 구축하는 도덕적 의사결정 방법의 일부이며 본 논문에서는 툴민과 존슨의 정의를 따라 다음과 같이 정의한다. "전형적 사례와 유비에 근거한 사유 절차를 활용하여 특별한 도덕적 의무의 존재와 엄격함에 관한 전문가적 입장을 형성하게 되는 도덕적 문제의 분석이다. 이때 도덕적 의무는 규칙이나 준칙의 틀로 제시되는데, 이것은 행위의 맥락이나 행위자의 특정한 조건에 있어서만 분명한 것으로 일반적[구속력을] 가지나 보편적이거나 불변의 것은 아니다" 결의론은 중립적 행위에 대한 도덕적 지침 제공을 목표로 하며 이를 위해 사례의 구체적인 측면과 맥락을 이해하고 이를 바탕으로 사례를 분류한 후 이들 범주의 패러다임 사례와 이들의 준칙을 비판적으로 검토한다. 이런 검토는 패러다임 사례의 준칙이 어느 정도의 정당성을 지니는지 개연적인 판단을 제공한다. 결의론은 분류와 패러다임 사례를 확인하고, 도덕 형태학, 분류와 유비를 통해 사안에 대한 허용 여부를 판단하는 단계를 거친다. 이러한 방법론에 대한 다양한 비판을 살펴보고 이 비판에 대한 가능한 반론과 결의론의 가장 취약점인 이데올로기적 측면을 보완한 비판적 결의론을 제안하였다.

Regional Challenges and Advances in Telegenetics During the COVID-19 Pandemic

Reding, Madeline University of Pittsburgh ProQuest Dissertations & 2021 해외박사(DDOD)

During the COVID-19 pandemic, telehealth services were rapidly implemented to continue providing care to patients. The New York-Mid Atlantic Caribbean (NYMAC) Regional Genetics Network (RGN) has worked to facilitate the use of telehealth to improve access to genetics services in the region.This study surveyed and interviewed NYMAC genetics providers to assess barriers and facilitators to the provision of telegenetics during the COVID-19 pandemic, the perceived value and demand for telegenetics services during this time, and any resources necessary to continue using telegenetics after the pandemic.A 29-question survey was developed and distributed in July 2020 through multiple email listservs, receiving 169 responses. Among respondents, the most commonly reported barriers to telegenetics prior to COVID-19 were inadequate funding/billing/reimbursement (14% of selections; n=54) and lack of institutional support (12%; n=45). During the pandemic, workflow/logistical issues (22%; n=45) ranked most highly. Facilitators were similar before and during the pandemic, and included provider interest, patient interest and institutional support. Approximately 60% of respondents (n=48) said they planned to continue providing telehealth services after the pandemic while 7% (n=6) did not, showing uncertainty about the future of telegenetics in the region.For the interviews, NYMAC TCOP leadership invited members to participate. Five genetics providers were interviewed, with each interview recorded and transcribed. Thematic analysis was performed and six themes and two sub-themes were identified: the Benefits of Telehealth; the Limitations of Telehealth (sub-themes: Social Factors and Patient Technology); External Factors; Evolving Models; Provider Adaptation; and Institutional Engagement.Results show that NYMAC genetics providers had diverse experiences adapting to the COVID-19 pandemic, informed by prior experiences with telehealth, practice settings, patient populations, and chosen service delivery models. Even so, each participant described a role for telegenetics in the future, to retain the flexibility to meet patient needs and ensure broader access services. Participants described policies and resources that would facilitate the future use of telegenetics, including changes to licensure and reimbursement policies, CMS recognition of genetic counselors, and funding. This study is significant to public health because it indicates areas in which NYMAC and other organizations may provide support to telegenetics programs moving forward.

Caregiver functional expectations for survivors of childhood brain tumors

Lucas, Matthew S ProQuest Dissertations & Theses University of Penn 2014 해외박사(DDOD)

While most children surviving a brain tumor now do survive and live into adulthood, not all are able to live independently. The reasons that young adult survivors are not able to be independent are likely multifactorial and have primarily been investigated in terms of the physical, cognitive, and (less often) psychosocial disease- and treatment-related sequelae. Mother-caregivers' past or current expectations for function of adolescent/young adult-survivors of childhood brain tumors are not known, nor is how expectations affect outcomes of the survivor (independence) and family (continued caregiving). What is known is that we are not addressing expectations. In order to make better sense of the expectations for survivor function by those living in it, I used a mixed methodologic approach to conduct a secondary analysis of both qualitative and quantitative data from 40 mother-caregiver and adolescent/young adult-survivor dyads. I found that caregiver expectations and meaning making, in both individual and family contexts, play important roles identifying changes in survivor developmental trajectory and managing the survivor's changing conditions and development, the family, and the self. Expectation findings may therefore be more meaningful when viewed from a family-based rather than individual perspective. Four dyadic narrative profiles of expectations identify either convergent or non-convergent expectations about a more or less optimistic future, and, across dyads, potentially identify those needing long-term help when the caregiver can no longer provide caregiving. Finally, the families made meaning about the brain tumor with (non-)religious framings and incorporated traditionally negative components of the survivorship experience into their respective understandings and meanings about what is normative for the family, but none of the families found meaning from the biomedical realm. This project moves the discussion about childhood brain tumor survivorship toward more rigorous methodologic approaches to family science with the intention to improve outcomes for families that are based upon the goals, needs, and abilities of the families themselves. Clinicians can then listen to and acknowledge families' social realities in order to accommodate the ongoing challenges posed by the brain tumor and its treatment.

The machine within: An ethnography of Asperger's syndrome, biomedicine, and the paradoxes of identity and technology in the late modern United States

Fein, Elizabeth The University of Chicago 2012 해외박사(DDOD)

Since its addition to the Diagnostic and Statistical Manual of Mental Disorders in 1994, Asperger's Syndrome has become one of the most intriguing and controversial mental diagnoses in contemporary public health. Defined as a disorder of the individual brain but manifesting most often in disordered social interactions, bringing both valued gifts as well as debilitating impairments, Asperger's Syndrome complicates dividing lines between individual and sociality, and between personality and pathology. This research sought to explore and unpack the broader cultural models of disease, identity and self through which individuals affected by autism spectrum disorders such as Asperger's Syndrome make sense of this condition, through eighteen months of participant observation in settings where the meaning of these conditions were being negotiated and put into practice. In each chapter, I explore how a different community defines and responds to autism spectrum disorders: professionals learning to diagnose autism; parents seeking alternative medical explanations and treatments for autism; autistic self-advocates in the neurodiversity movement; teachers and parents in a rural school district negotiating access to a program for students with Aspergers; psychologists working within a psychiatric clinic at a medical center; and researchers presenting work at a national autism conference. In the process of determining what is and is not autism, each community draws upon, maintains and enforces other distinctions as well: between individual and culture, between human and inhuman, between self and other, and between brain and mind. In each case, these attempts at separation are reactions not only to autism itself, but also to the increasing standardization, routinization, and technologization of social and cultural life---patterns that people on the autism spectrum, with their "restricted and repetitive behaviors" clearly manifest. Attempting to resist such standardization, each of the groups chronicled in these chapters posit and privilege an ideal of the "pure self", unaffected by sociocultural input that is, in many cases, seen as threateningly homogenizing. In doing so, however, they collude in the concealment of social structures and their power; ironically, they thus often wind up playing into the very social imperatives they seek to resist. The final chapter explores an alternative perspective from teenagers coming of age with an autism spectrum diagnosis, who contest the ideology of a pure self embedded deep within medical language. Instead, they draw upon shared mythologies from comic books, video games and roleplaying games to express and work through their experience of hybridity, multiplicity and permeability.