Transformative Justice in Ethics Consultation.

Clinical ethics consultants bear witness to the direct harms of intersecting axes of oppression-such as racism and classism-as they impinge on elucidating and resolving ethical dilemmas in health care. Health Care Ethics Consultation (HCEC) professional guidance supports recognizing and analyzing power dynamics and social-structural obstacles to good care. However, the most relied upon bioethical principles in clinical ethics have been criticized for insufficiency in this regard. While individual ethics consultants have found ways to expand their approaches, they do so in an ad hoc way without frameworks to guide consistency. Motivated by the practical expertise of clinical ethicists, this essay offers a new framework to support openness to analyzing power imbalances and respecting marginalized voices and values. This framework is grounded in transformative justice, where the aim is to take responsibility for oppression by centering and responding to moral perspectives and value systems that are all too often silenced.

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study.

BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described. AIM: (1) To investigate parental experiences with clinicians and (2) to provide practical recommendations and behaviors clinicians could emulate to avoid conflict. DESIGN: Participants were asked to describe their best and worse experiences, as well as supportive clinicians they met. The results were analyzed using mixed methods. SETTING/PARTICIPANTS: Parents of children with trisomy 13 and 18 who were part of online social support networks. A total of 503 invitations were sent, and 332 parents completed the questionnaire about 272 children. RESULTS: The majority of parents (72%) had met a supportive clinician. When describing clinicians who changed their lives, the overarching theme, present in 88% of answers, was trust. Parents trusted clinicians when they felt he or she cared and valued their child, their family, and made them feel like good parents (69%), had appropriate knowledge (66%), and supported them and gave them realistic hope (42%). Many (42%) parents did not want to make-or be part of-life-and-death decisions. Parents gave specific examples of supportive behaviors that can be adopted by clinicians. Parents also described adverse experiences, generally leading to conflicts and lack of trust. CONCLUSION: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.

Integrating public health students into interprofessional education.

Recognizing the public health professional are critical members of interprofessional teams, the Council on Education for Public Health (CEPH) recently added a required Masters of Public Health (MPH) student competency focused on interprofessional education (IPE). A student-centered approach to the design and evaluation of an emergency preparedness-focused curricular program to meet the interprofessional needs of MPH students was used to meet this expectation at the University of Washington. Curriculum design was informed by two 80-minute listening sessions with MPH students to better understand their current interprofessional educational experiences and needs, and how an emergency preparedness-focused two-hour Interprofessional Active Learning Series (iPALS) session could help them develop interprofessional competency. The resultant iPALS session was assessed with a short, paper-based questionnaire. We found MPH students have an interest in participating in IPE, and that all students who participated in the emergency preparedness-focused iPALS session reported significant increases in their interprofessional and disaster response abilities based on their pre- and post-session evaluations. Student-centered IPE curriculum focused on emergency preparedness can enhance the self-reported ability of students across the health sciences to perform on interprofessional teams while engaging in a topic that has relevance to MPH students.

\Defining Patient Advocacy for the Context of Clinical Ethics Consultation: A Review of the Literature and Recommendations for Consultants.

The idea of patient advocacy as a function of clinical ethics consultation (CEC) has been debated in the bioethics literature. In particular, opinion is divided as to whether patient advocacy inherently is in conflict with the other duties of the ethics consultant, especially that of impartial mediator. The debate is complicated, however, because patient advocacy is not uniformly conceptualized. This article examines two literatures that are crucial to understanding patient advocacy in the context of bioethical deliberations: the CEC literature and the literature on advocacy in the social work profession. A review of this literature identifies four distinct approaches to patient advocacy that are relevant to CEC: (1) the best interest approach, (2) the patient rights approach, (3) the representational approach, and (4) the empowerment approach. After providing a clearer understanding of the varied meanings of patient advocacy in the context of CEC, we assert that patient advocacy is not inherently inconsistent with the function of the ethics consultant and the CEC process. Finally, we provide a framework to help consultants determine if they should adopt an advocacy role.

Finding A Seat at the Table Together: Recommendations for Improving Collaboration between Social Work and Bioethics.

Social work and bioethics are fields deeply committed to cross-disciplinary collaboration to do their respective work. While scholars and practitioners from both fields share a commitment to social justice and to respecting the dignity, integrity and the worth of all persons, the overlap between the fields, including shared values, has received little attention. The purpose of this article is to describe the ways in which greater collaboration between the two fields can broaden their scope, enrich their scholarship, and better ground their practice. We describe the potential for realizing such benefits in two areas - health care ethics consultation and social inequalities in health - arguing that the fields both complement and challenge one another, making them ideal partners for the interdisciplinary inquiry and problem-solving so often called for today in health and health care.

Our children are not a diagnosis: the experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18.

Trisomy 13 and trisomy 18 (T13-18) are associated with high rates of perinatal death and with severe disability among survivors. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. Using mixed methods, we asked parents about their prenatal experience, their hopes, the life of their affected child, and their family experience. 332 parents answered questions about 272 children; 128 experienced PND. These parents, despite feeling pressure to terminate (61%) and being told that their baby would likely die before birth (94%), chose to continue the pregnancy. Their reasons included: moral beliefs (68%), child-centered reasons (64%), religious beliefs (48%), parent-centered reasons (28%), and practical reasons (6%). At the time of the diagnosis, most of these parents (80%) hoped to meet their child alive. By the time of birth, 25% chose a plan of full interventions. A choice of interventions at birth was associated with fewer major anomalies (P < 0.05). Parents describe "Special" healthcare providers as those who gave balanced and personalized information, respected their choice, and provided support. Parents make decisions to continue a pregnancy and choose a plan of care for their child according to their beliefs and their child's specific medical condition, respectively. Insights from parents' perspective can better enable healthcare providers to counsel and support families.

Informed consent for whole genome sequencing: a qualitative analysis of participant expectations and perceptions of risks, benefits, and harms.

Scientific evidence on the extent to which ethical concerns about privacy, confidentiality, and return of results for whole genome sequencing (WGS) are effectively conveyed by informed consent (IC) is lacking. The aim of this study was to learn, via qualitative interviews, about participant expectations and perceptions of risks, benefits, and harms of WGS. Participants in two families with Miller syndrome consented for WGS were interviewed about their experiences of the IC process and their perceptions of risks, benefits, and harms of WGS. Interviews were transcribed and analyzed for common themes. IC documents are included in the Supplementary Materials. Participants expressed minimal concerns about privacy and confidentiality with regard to both their participation and sharing of their WGS data in restricted access databases. Participants expressed strong preferences about how results should be returned, requesting both flexibility of the results return process and options for the types of results to be returned. Participant concerns about risks to privacy and confidentiality from broad sharing of WGS data are likely to be strongly influenced by social and medical context. In these families with a rare Mendelian syndrome, the perceived benefits of participation strongly trumped concerns about risks. Individual preferences, for results return, even within a family, varied widely. This underscores the need to develop a framework for results return that allows explicitly for participant preferences and enables modifications to preferences over time. Web-based tools that facilitate participant management of their individual research results could accommodate such a framework.

Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer.

BACKGROUND: Social workers (SWs) and chaplains are trained to support families facing challenges associated with critical illness and potential end-of-life issues. Little is known about how parents view SW/chaplain involvement in care for critically ill children with cancer. METHODS: We studied parent perceptions of SW/chaplain involvement in care for pediatric intensive care unit (PICU) patients with cancer or who had a hematopoietic cell transplant. English- and Spanish-speaking parents completed surveys within 7 days of PICU admission and at discharge. Some parents participated in an optional interview. RESULTS: Twenty-four parents of 18 patients completed both surveys, and six parents were interviewed. Of the survey respondents, 66.7% and 75% interacted with SWs or chaplains, respectively. Most parents described SW/chaplain interactions as helpful (81.3% and 72.2%, respectively), but few reported their help with decision making (18.8% and 12.4%, respectively). Parents described SW/chaplain roles related to emotional, spiritual, instrumental, and holistic support. Few parents expressed awareness about SW/chaplain interactions with other healthcare team members. CONCLUSIONS: Future work is needed to determine SWs'/chaplains' contributions to and impact on parental decision making, improve parent awareness about SW/chaplain roles and engagement with the healthcare team, and understand why some PICU parents do not interact with SWs/chaplains.

Our community in focus: the use of photovoice for youth-driven substance abuse assessment and health promotion.

The successful development and implementation of prevention curricula requires seeking strategies that combine the strengths of researchers and community members. Because young people are considered to be the experts in their own lives, it is important to determine effective ways to engage them in substance abuse assessment and prevention initiatives. The community-based participatory action research methodology of photovoice is one way to engage youth in assessment of this public health issue. "Our Community in Focus" was a project that used the photovoice methodology to engage high school youth in a community-based assessment of adolescent substance use and abuse. Through the photovoice method, youth were able to reflect their community's strengths and concerns with regards to adolescent substance abuse, as they took photographs to answer the question "What contributes to adolescents' decisions to use or not to use alcohol and other drugs?" The youth and the community were highly receptive to the project and its methodology, and photographs taken by photovoice participants presented a compelling argument for action.

Impact of erythropoiesis-stimulating agents on energy and physical function in nondialysis CKD patients with anemia: a systematic review.

BACKGROUND: Previous analyses report the impact of erythropoiesis-stimulating agents (ESAs) on health-related quality of life across various populations. In this analysis, we review published studies and quantify the effect of ESA therapy on energy/fatigue and physical function in nondialysis patients with chronic kidney disease (CKD) related anemia. STUDY DESIGN: Systematic literature search to identify articles (1980-2008) that evaluated effects of ESAs on patient-reported energy and physical function. SETTING & POPULATION: Nondialysis CKD patients with anemia enrolled in prospective trials. SELECTION CRITERIA FOR STUDIES: Prospective studies measuring energy or physical function with both baseline and follow-up measurement. INTERVENTION: ESA treatment. OUTCOMES: Improvements in energy and physical function assessed using effect size, a measure of treatment responsiveness. RESULTS: 14 studies were identified: 11 measured energy and 14 measured physical function. The 36-Item Short-Form Health Survey (SF-36) was the most common instrument used to report energy and physical function. Of 11 studies measuring energy, 2 were double-blind randomized placebo-controlled trials (RCTs), 5 were open-label RCTs, and 4 were single-arm open-label studies. Eight of 11 studies reported statistically significant improvements in energy. Effect size for energy ranged from small (0.24) to large (1.90) in ESA-treated groups and was moderate in each arm of the low- versus high-hemoglobin target RCTs. Of 14 studies measuring physical function, 2 were double-blind RCTs, 6 were open-label RCTs, and 6 were single-arm open-label studies. Ten of 14 studies reported statistically significant improvements in physical function. Effect size for physical function ranged from small (0.37) to large (2.38) in ESA-treated groups and was negligible to moderate in each arm of low- versus high-hemoglobin target studies. LIMITATIONS: Findings and conclusions were limited by the available evidence. CONCLUSION: RCTs and single-arm studies indicate that treatment of anemia with ESAs improves energy and physical function in nondialysis CKD patients.

Improving quality of prevention of mother-to-child HIV transmission services in Ukraine: a focus on provider communication skills and linkages to community-based non-governmental organizations.

BACKGROUND: Ukraine has the highest rate of HIV infection in Europe, with an estimated adult prevalence of 1.6 percent. The epidemic in Ukraine remains largely driven by injection drug use, and women of reproductive age are being increasingly affected. Prior research has highlighted the need to improve the quality of services for prevention of mother-to-child transmission (PMTCT) and to address other issues related to HIV counseling, testing, and care, especially in the context of antenatal and obstetric services. METHODS: From 2004 to 2007, PATH led a collaborative effort to improve the quality of PMTCT services in Ukraine. Initial assessments included focus groups with Ukrainian women and review of existing educational materials. Interventions focused on training providers to improve skills in communication and referral to community-based support; they also addressed the underlying issue of stigma. RESULTS: Observational data demonstrated that providers who participated in the training intervention delivered PMTCT counseling of a consistently higher quality than did providers who did not undergo training. Exit interviews with clients confirmed these findings. CONCLUSIONS: An intervention focused on strengthening voluntary counseling and testing for HIV, forging partnerships with local organizations, and undoing HIV-related stigma can help to improve access to and quality of PMTCT services in antenatal care clinics.

Ethical challenges in research with orphans and vulnerable children: a qualitative study of researcher experiences.

BACKGROUND: Orphans and vulnerable children (OVCs) represent a significant population worldwide, enduring poor health and living conditions. Evidence-based interventions are needed. However, without parents, ethical concerns about including OVCs in research persist. The aim of our study was to better understand the ethical challenges facing researchers who work with OVCs. METHODS: We conducted semi-structured interviews with 12 international pediatric researchers working with OVCs in seven countries. We used descriptive content analysis to characterize the ethical rationale for inclusion and associated challenges. RESULTS: Researchers believed research was justified as a necessary means for informing evidence-based interventions to benefit OVCs directly or as a population. Ethical challenges included difficulty identifying OVCs given variation among children living without parents; difficulty identifying guardians among a range of caregivers; concerns about meaningfulness of guardian consent; difficulty assessing risk; and responding to children's many needs. CONCLUSIONS: A range of caregivers bear responsibility to protect OVC's interests in place of parents in research but are often not prepared to do so. This places greater burden on researchers to assess risks and respond to children's needs. Findings suggest that we should improve support and rethink the roles of guardians, researchers and older children in research participation and protection.

Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.

As genetic research is increasingly conducted in children, it is important to understand how parents make decisions about enrolling their children and what they think about receiving their children's genetic research results. We conducted semi-structured phone interviews with 23 parents of children enrolled in genetic studies of autism or diabetes. Qualitative thematic analysis focused on two important components of genetic research and genotype-driven recruitment: participation in genetic research and return of results. Our findings suggest that parents' preferences and perspectives may be specific to their child's disease and the needs of the family as a whole. Assessing the expectations of target research populations will be beneficial for developing best practices for pediatric genetic research, return of results, and genotype-driven recruitment.

Research participants' perspectives on genotype-driven research recruitment.

Genotype-driven recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, "information is valuable," and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally.