Publications by authors named "Connie Ulrich"

This analysis examined regret from participation in cancer clinical trials (CCT) and explored associations between regret and symptom burden, symptom bother, therapeutic optimism, and the importance of spiritual beliefs. This is a secondary analysis of cross-sectional data from a study of American CCT patient-participants conducted from 2015 to 2019. Descriptive statistics, bivariate associations, and logistic regression were used to evaluate regret in this sample ( = 325).

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Palliative care aims to improve the quality of life for seriously ill individuals and their caregivers by addressing their holistic care needs through a person- and family-centered approach. While there have been growing efforts to integrate Artificial Intelligence (AI) into palliative care practice and research, it remains unclear whether the use of AI can facilitate the goals of palliative care. In this paper, we present three hypothetical case examples of using AI in the palliative care context, covering machine learning algorithms that predict patient mortality, natural language processing models that detect psychological symptoms, and AI chatbots addressing caregivers' unmet needs.

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In this paper, we describe a research protocol for surveying and interviewing Latinx immigrants recently arrived at the US southern border, and we raise important and unique issues that need to be considered with this population. The main objective is to share experiences, challenges, opportunities, and essential considerations (which we call lessons learned) that researchers should take into account when working with this vulnerable study population. The six lessons learned focus on: (1) fostering relationships with community partners; (2) participant consent and compensation; (3) linguistic and cultural fluency of researchers; (4) adapting data collection procedures to the environment and conditions; (5) establishing trust with participants and being trustworthy; and (6) addressing the ethical considerations of research with immigrant populations and the positionality of researchers.

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Article Synopsis
  • Parents in pediatric intensive care units have different communication experiences with healthcare professionals, and it's important to understand factors that contribute to miscommunication.
  • A survey of 200 parents revealed that a significant portion reported experiencing miscommunication, with factors such as parental stress and trust in physicians impacting these perceptions.
  • The study highlights the need for more research on miscommunication factors to improve support for children and their families during hospital stays.
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Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Describe the extent to which PPC team members serve in pediatric health care ethics (PHCE) consultancy roles and to describe their experiences interacting with pediatric ethic consultant services. Online survey distributed to members of the American Academy of Pediatrics and American Academy of Hospice and Palliative Care pediatric and ethics section and special interest groups in the United States.

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Background: To advance oncology treatment for adults, comprehensive understanding of how and why people decide to enroll in, remain in, and withdraw from cancer clinical trials is needed. While quantitative findings provide insights into these benefits and burdens, they provide limited understanding of how adults with cancer appraise their situation and approach decisions to undertake a clinical trial. The goal of this mixed methods analysis was to conceptualize participants' assessment of benefits and burdens related to cancer clinical trial participation.

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With increasing violence, political, and economic instability in Latin America, there is a record number of migrants crossing the U.S. southern border.

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Background: Poorer leadership communication during COVID-19 may have contributed to the moral distress of nurses in hospitals where Black patients predominantly access their care (BSH).

Purpose: To compare nurse moral distress and leadership communication during the COVID-19 pandemic in hospitals that serve disproportionately many or few patients of Black race.

Methods: In a national hospital sample (n = 90), nurse survey data were collected (March 2021).

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Objective: Research cannot advance without the voluntary participation of human participants.

Summary Of Arguments: Full participation of research participants is often restrained by the traditional research framework, which relegates them to a predefined participant role and allows them only quasi-scripted opportunities to contribute to research processes and outcomes. Terms commonly used to refer to research participants do not reflect their significant role or send a clear message about their value.

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Cancer survivors including Asian American breast cancer survivors have reported their high needs for help during their survivorship process. With the COVID-19 pandemic, the necessity of technology-based programs to address their needs for help without face-to-face interactions has been highlighted. The purpose of this randomized intervention study was to determine the efficacy of a technology-based program in reducing various types of needs for help among this specific population.

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Evaluating readiness for discharge from the intensive care unit (ICU) is a critical aspect of patient care. Whereas evidence-based criteria for ICU admission have been established, practical criteria for discharge from the ICU are lacking. Often discharge guidelines simply state that a patient no longer meets ICU admission criteria.

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Background: The field of nursing has long been concerned with ethical issues. The history of the nursing profession has a rich legacy of attention to social justice and to societal questions regarding issues of fairness, access, equity, and equality. Some nurses have found that their clinical experiences spur an interest in ethical patient care, and many are now nurse bioethicists, having pursued additional training in bioethics and related fields (e.

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Importance: Informed consent is essential to ethical, rigorous research and is important to recruitment and retention in cancer trials.

Objective: To examine cancer clinical trial (CCT) participants' perceptions of informed consent processes and variations in perceptions by cancer type.

Design And Setting And Participants: Cross-sectional survey from mixed-methods study at National Cancer Institute-designated Northeast comprehensive cancer center.

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A culturally tailored virtual program could meet the survivorship needs of Asian American women breast cancer survivors (AABC). This study aims to determine the efficacy of a culturally tailored virtual information and coaching/support program (TICAA) in improving AABC's survivorship experience. A randomized clinical trial (NCT02803593) was conducted from January 2017 to June 2020 among 199 AABC.

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Objectives: In 2019, the American Academy of Pediatrics (AAP) outlined 8 operational recommendations for pediatric institutional ethics committees (IECs). The study purpose was to quantify the extent to which pediatric IECs adhere to the AAP IEC Policy Statement recommendations.

Methods: A convenience sample of ethics points of contact from Children's Hospital Association membership were invited to complete an electronic survey on their ethics programs and practices in spring 2022.

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Purpose: Miscommunication between parents and healthcare providers in the Pediatric Intensive Care Unit (PICU) can affect family-provider relationships and outcomes. This paper reports on the development and psychometric testing of a measure for parent perceived miscommunication, defined as the failure to communicate clearly as perceived by relevant stakeholders in the PICU.

Design And Methods: Miscommunication items were identified through a review of the literature with interdisciplinary experts.

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Aim: To explore healthcare team members' perceptions of their ethical obligations toward HIV-positive adolescents and their enrolment in and adherence to antiretroviral therapy among adolescents attending a Care and Treatment Center (CTC) in Temeke Regional Referral Hospital in Tanzania.

Design: This is a descriptive exploratory qualitative study.

Methods: A total of 16 healthcare team members were purposively selected from the hospital CTC to participate in in-depth qualitative interviews.

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Psilocybin-assisted therapies (PAT) are reemerging as a treatment for complex distress often prompting mystical experiences, enhanced meaning, and spiritual wellbeing. We sought to investigate how measures of spirituality are employed in experimental studies of PAT conducted with seriously ill adults. We included experimental studies of psilocybin conducted with seriously ill adults, which employed measures that contained spirituality and mysticism concepts within their domains or subdomains.

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Article Synopsis
  • - The study investigates how patients’ perceptions of benefits and burdens influence their decision to stay in cancer clinical trials (CCTs), highlighting the importance of participant retention to avoid biases and data loss in research.
  • - Conducted at a comprehensive cancer center, the research involved a survey of 334 adult cancer patients from September 2015 to June 2019, assessing their views on 22 benefits and 23 burdens of trial participation using a 5-point scale.
  • - Results showed that key benefits included helping others and societal contribution, while notable burdens were concerns about placebos and adverse effects, with higher burden perceptions linked to increased withdrawal rates from the trials.
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Background: Patients with hematologic malignancies experience anxiety and depressive symptoms from diagnosis through survivorship. The aim of this systematic review is to determine if coping skill interventions can reduce anxiety and depressive symptoms for persons with hematologic cancer.

Methods: Databases including PubMed, Embase, CINAHL, APA PyschInfo, Scopus, and Cochrane were searched in June of 2021 for coping skill interventional studies with adult patients with hematologic cancer and outcomes of anxiety and depressive symptoms.

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Background: The COVID-19 pandemic continues to disrupt every society as SARs-CoV-2 variants surge among the populations. Health care providers are exhausted, becoming ill themselves, and in some instances have died. Indeed, hospitals are struggling to find staff to care for critically ill patients most in need.

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Caregivers often face critical decisions, burdens, and perceived benefits related to a loved one participating in cancer clinical trial (CCTs). The purpose of this analysis was to better understand caregivers' perceptions on the benefits and burdens of participation in cancer clinical trials. Using a qualitative descriptive design, interviews with 20 caregivers of patient-participants from a larger parent study were conducted.

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