Clinical ethics consultations: a scoping review of reported outcomes.

BACKGROUND: Clinical ethics consultations (CEC) can be complex interventions, involving multiple methods, stakeholders, and competing ethical values. Despite longstanding calls for rigorous evaluation in the field, progress has been limited. The Medical Research Council (MRC) proposed guidelines for evaluating the effectiveness of complex interventions. The evaluation of CEC may benefit from application of the MRC framework to advance the transparency and methodological rigor of this field. A first step is to understand the outcomes measured in evaluations of CEC in healthcare settings. OBJECTIVE: The primary objective of this review was to identify and map the outcomes reported in primary studies of CEC. The secondary objective was to provide a comprehensive overview of CEC structures, processes, and roles to enhance understanding and to inform standardization. METHODS: We searched electronic databases to identify primary studies of CEC involving patients, substitute decision-makers and/or family members, clinicians, healthcare staff and leaders. Outcomes were mapped across five conceptual domains as identified a priori based on our clinical ethics experience and preliminary literature searches and revised based on our emerging interpretation of the data. These domains included personal factors, process factors, clinical factors, quality, and resource factors. RESULTS: Forty-eight studies were included in the review. Studies were highly heterogeneous and varied considerably regarding format and process of ethical intervention, credentials of interventionist, population of study, outcomes reported, and measures employed. In addition, few studies used validated measurement tools. The top three outcome domains that studies reported on were quality (n = 31), process factors (n = 23), and clinical factors (n = 19). The majority of studies examined multiple outcome domains. All five outcome domains were multidimensional and included a variety of subthemes. CONCLUSIONS: This scoping review represents the initial phase of mapping the outcomes reported in primary studies of CEC and identifying gaps in the evidence. The confirmed lack of standardization represents a hindrance to the provision of high quality intervention and CEC scientific progress. Insights gained can inform the development of a core outcome set to standardize outcome measures in CEC evaluation research and enable scientifically rigorous efficacy trials of CEC.

"The Rest of my Childhood was Lost": Canadian Children and Adolescents' Experiences Navigating Inflammatory Bowel Disease.

Children and adolescents with Inflammatory Bowel Disease (IBD) face significant and unique challenges related to their condition. The aim of this study was to better understand some of these challenges, and to explore how Canadian youth respond to them. We interviewed 25 pediatric patients with IBD, ranging in age from 10-17, to find out about their illness experiences. Using a thematic analysis, we discerned three themes: challenges related to diagnosis, making sense of change, and navigating sociability. Taken together, they paint a picture of young people facing great uncertainty prior to diagnosis, pronounced changes to selfhood as they make lifestyle adjustments, and facing difficulties with the implications of reduced sociability because of their disease. We conclude by providing recommendations for the development of resources aimed at helping newly diagnosed pediatric patients navigate these issues.

Voluntary decision-making in addiction: A comprehensive review of existing measurement tools.

The notion of voluntariness, notably the inability to refrain from using an addictive substance, is central to addiction. This review examines different constructs measuring voluntariness in the context of drug addiction. We found 117 articles featuring 123 distinct scales for 11 of the 16 constructs initially searched. Self-efficacy was by far the construct with most scales. Most scales were not specifically developed with samples of people with addictions. From a methodological standpoint, current literature jeopardizes the validity of generalizations about how voluntariness functions and is measured in people with and without a drug addiction. From the standpoint of social psychology, the study of voluntariness remains anchored in an individualistic orientation to the study of cognition and behavior, thus calling for greater crosstalk between psychology subspecialties.

Development and dissemination of an ethical guidance and person-centred isolation care planning tool to support the care of people with dementia during the COVID-19 pandemic.

BACKGROUND: Long-term care (LTC) residents have been disproportionately impacted by the COVID-19 pandemic, both from the virus itself and the restrictions in effect for infection prevention and control. Many barriers exist in LTC to prevent the effective isolation of suspect or confirmed COVID-19 cases. Furthermore, these measures have a severe impact on the well-being of LTC residents. Our aim was to develop a guide for long-term care to address the ethical challenges associated with isolating dementia patients during the pandemic. The Dementia Isolation Toolkit (DIT) was developed by members of the research team in partnership with LTC stakeholders to address: 1) the practical challenges of isolating or quarantining people with dementia in a compassionate, safe, and effective manner; and 2) the need for ethical guidance to support decision-making regarding isolation and infection control in LTC, to prevent indecision and moral distress. To develop the DIT the team reviewed and synthesized the literature on pandemic ethics in a plain-language document, which was then reviewed by our partners and stakeholders. The final ethical guidance tool includes a discussion of the ethics around infection control measures in a pandemic, an ethical decision-making tool, and a person-centred isolation care planning tool. The ethical guidance tool has been downloaded more than 6500 times since it was published (bit.ly/dementiatoolkit), and has been disseminated internationally. The worksheets are being used during outbreaks to support care and decision-making, as well as proactively, to prepare for outbreaks by developing isolation care plans. There is a need for support for ethical decision-making in the context of a pandemic, particularly in settings such as LTC. Future studies will evaluate the implementation of the tool and its impact in addressing moral distress in health care providers in long-term care.

Addiction and Voluntariness: Five "Challenges" to Address in Moving the Discussion Forward.

The question as to whether people with an addiction have control (and to what extent) over their addiction, and voluntarily decide to use substances is an ongoing source of controversy in the context of research on addiction, health policy and clinical practice. We describe and discuss a set of five challenges for further research into voluntariness (definition[s], measurement and study tools, first person perspectives, contextual understandings, and connections to broader frameworks) based on our own research experiences and those of others.

The psychological study of race, diversity, and culture: Foundational contributions of James M. Jones to modern theories of racism.

The field of psychology has a history of harming racialized communities through the endorsement of scientific racism and the systematic silencing and erasure of dissenting voices. The field has a moral imperative to work collectively to create a future where the experiences, perspectives, and contributions of Black people are included and celebrated. Here, we contribute to centering Black voices by highlighting the scholarship of Professor James M. Jones, whose work on racial issues and diversity has had a profound impact. Our aim was twofold: (a) critically review foundational pieces of Jones' work and identify core themes and (b) discuss the impact of Jones' work on science and society, including areas for future research. Using various keyword strategies and in consultation with Professor Jones, we conducted exploratory and confirmatory searches using APA PsycInfo, EBSCOhost, and Google Scholar. We curated 21 pieces for review and identified six core themes: (a) racism as a universal context, (b) culture and context matter in situating historical and temporal narratives, (c) methodological limitations of psychological examinations of race, (d) doing diversity, (e) accepting divergent social realities, and (f) coping with oppression. Jones' systems-level analysis of racism provides a strong theoretical and analytical framework for the study of racial issues. Jones' impact and legacy extend far beyond the academe: as director of the Minority Fellowship Program and executive director of public interest at American Psychological Association, he has influenced generations of psychologists and paved a pathway for psychological science methods in social policy. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Children's perspectives on the benefits and burdens of research participation.

BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. METHODS: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. RESULTS: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. CONCLUSIONS: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process.

To tell or not to tell: A qualitative interview study on disclosure decisions among children with inflammatory bowel disease.

RATIONALE: Living with a chronic illness poses many challenges, especially during the adolescent stage of development. Few studies have explored young people's experiences of talking about their illness and how they go about deciding if and when they should tell others about their condition. OBJECTIVE: Our study sought the perspectives of Canadian children and adolescents living with inflammatory bowel disease (IBD) to determine how they go about deciding if and when to tell others about their illness. METHODS: Twenty-five participants with IBD, ranging in age from 10 to 17 years old, were interviewed about their experiences. RESULTS: Our participants highlighted that they generally preferred to conceal their illness. However, when they did disclose, they drew on a diverse range of contextual factors such as their knowledge of the illness as well as the severity of their illness, to make the decision. They also highlighted that one of the main challenges they experience is dealing with negative reactions to the news of their illness. This paper presents a decision-making model describing how children decide whether to disclose or conceal their IBD. CONCLUSION: Our study illustrates that for children and adolescents, managing others' knowledge about their illness has important implications for illness identity management. We argue that knowledge of how children with IBD make disclosure decisions is an important part of understanding the social experience of having IBD, and in creating environments that allow them to adapt to life with IBD. Our study clearly highlights the need for specific programs to be implemented to normalize IBD and to create supportive environments for children and adolescents diagnosed with IBD.