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Antipsychotic treatment for youth in foster care: Perspectives on improving youths' experiences in providing informed consent.

ABSTRACT: The disproportionate prescribing of high-risk antipsychotic medication for youth in foster care is a significant social problem across the U.S. This qualitative study examined stakeholder perceptions of prescribing, being prescribed, or overseeing prescriptions for youth in foster care. Interviews and focus groups were conducted with clinicians, child welfare caseworkers, foster caregivers, and foster care alumni. The overall aim was to systematically explore their understanding of and experiences with the Informed Consent to treatment and shared decision-making processes related to prescribing and monitoring of antipsychotic medications for youth in foster care. Participants were recruited from around the country; data collection using structured interview or focus group guides occurred via telephone and web-based formats. This study is rooted in the lived experiences of stakeholders in addressing recent federal legislative mandates and guidelines for the oversight and co-ordination of mental health service delivery to youth in foster care. Numerous themes emerged that provide context in employing a team-based approach for youth engaged with multiple child-serving systems. Eight themes emerged that illustrate the necessary components of successfully implementing Informed Consent and shared decision-making as well as the barriers and concerns germane to this process. The findings address the nuanced complexity of and tensions with the trade-offs inherent in delivering mental health care to youth involved in foster care. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

SUBMITTER: Simmel C

PROVIDER: S-EPMC8404191 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Providing Informed Consent: A Standardized Case.

Project description:IntroductionFrom the first day of residency, residents may be required to consent patients for interventions, procedures, or tests. The ability to perform an informed consent is considered one of the Association of American Medical College's Core Entrustable Professional Activities for entering residency. This case provides learners with the opportunity to obtain informed consent for a lumbar puncture procedure and to receive immediate structured feedback on their performance. This is a formative assessment, which has been used with both senior medical students and first-year residents at our institution.MethodsThe case involves a standardized patient with a history of leukemia who presents to the emergency department with a headache, fever, and lethargy. The learner is charged with the task of compassionately, honestly, and confidently explaining the process of a lumbar puncture in order to appropriately obtain informed consent.ResultsThis case was well received, with the vast majority of learners rating the instructions as clear and the tasks of the station as appropriate for the level of learner. Comments provided by the learners regarding the standardized patients' feedback indicate that this is a useful exercise to assist with the development of the crucial skill of obtaining informed consent.DiscussionOverall, learners are able to perform this task and find it a meaningful exercise. We are able to measure both content and communication skills. In our cohort, learners are able to perform above the targeted passing score. This provides some evidence of competency in terms of both content and communication skills.

| S-EPMC6464558 | biostudies-literature

Who Speaks for Me? Addressing Variability in Informed Consent Practices for Minimal Risk Research Involving Foster Youth.

Project description:BackgroundYouth in protective custody (e.g.. foster care) are at higher risk for poorer physical and mental health outcomes compared with those who are not in custody. These differences may be due in part to the lack of research on the population to create evidence-based recommendations for health care delivery. A potential contributor to this lack of research is difficulties in obtaining informed consent for empirical studies in this population. The objective of this study was to describe the approaches to obtaining informed consent in minimal risk studies of foster youth and provide recommendations for future requirements.MethodsWe conducted a systematic review of the literature to characterize the informed consent approaches in published minimal risk research involving youth in foster care. We searched PubMed, CINAHL, PsychINFO, Embase, ERIC, Scopus, and EBMR. Inclusion criteria were: studies conducted in the United States, included current foster youth, minimal risk, peer reviewed, and published in English. Full text was reviewed, and individuals required to consent and assent were extracted.ResultsForty-nine publications from 33 studies were identified. Studies required 0 to 3 individuals to consent. Individuals required to give consent included case workers (16, 48%), foster caregivers (12, 36%), biological parents (7, 21%), judges (5, 15%), and guardian ad litems (2, 6%). Twenty-nine (88%) studies required the youth's assent. The studies used 14 different combinations of individuals. One (3%) study utilized a waiver of consent.ConclusionsThere is no consistent approach for obtaining informed consent for foster youth to participate in minimal risk research. Consent should ideally involve individuals with legal authority and knowledge of the individual youth's interests and should not be burdensome. Consensus regarding consent requirements may facilitate research involving foster youth.

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Foster care, externalizing disorders, and antipsychotic use among Medicaid-enrolled youths.

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Project description:One of the significant modifications to the Common Rule is the requirement that prospective participants be given information sufficient for a "reasonable person." However, research is limited on what types of information patients, caregivers, and providers consider "key information." Although certain aspects of informed consent (IC) may be considered standard, considering the individualized needs and preferences of patients is necessary for patient-centered consent. In this study, we qualitatively examined the specific types of information that patients and caregivers involved in hematopoietic cell transplantation (HCT), as well as their providers, believe to be important and necessary as part of the IC process to make a decision about participating in clinical research; and further, how these perspectives are aligned. Our findings suggest opportunities for improving the IC document and process by emphasizing information of importance to patients, such as the benefits to others and contributions to science that are associated with participation in clinical research. Furthermore, increasing patient engagement during the IC process may allow providers to streamline information that is aligned with patient information needs and preferences.

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Project description:Complex and sometimes controversial information must be conveyed during the consent process for participation in biorepositories, and studies suggest that consent documents in general are growing in length and complexity. As a first step toward creating a simplified biorepository consent form, we gathered data from multiple stakeholders about what information was most important for prospective participants to know when making a decision about taking part in a biorepository.We recruited 52 research participants, 12 researchers, and 20 institutional review board representatives from Durham and Kannapolis, NC. These subjects were asked to read a model biorepository consent form and highlight sentences they deemed most important.On average, institutional review board representatives identified 72.3% of the sentences as important; researchers selected 53.0%, and participants 40.4% (P = 0.0004). Participants most often selected sentences about the kinds of individual research results that might be offered, privacy risks, and large-scale data sharing. Researchers highlighted sentences about the biorepository's purpose, privacy protections, costs, and participant access to individual results. Institutional review board representatives highlighted sentences about collection of basic personal information, medical record access, and duration of storage.The differing mandates of these three groups can translate into widely divergent opinions about what information is important and appropriate to include a consent form. These differences could frustrate efforts to move simplified forms--for biobanking as well as for other kinds of research--into actual use, despite continued calls for such forms.

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Improving Informed Consent for Palliative Chemotherapy

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Improving the informed consent process in international collaborative rare disease research: effective consent for effective research.

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Health workers' perspectives on informed consent for caesarean section in Southern Malawi.

Project description:ObjectiveInformed consent is a prerequisite for caesarean section, the commonest surgical procedure in low- and middle-income settings, but not always acquired to an appropriate extent. Exploring perceptions of health care workers may aid in improving clinical practice around informed consent. We aim to explore health workers' beliefs and experiences related to principles and practice of informed consent.MethodsQualitative study conducted between January and June 2018 in a rural 150-bed mission hospital in Southern Malawi. Clinical observations, semi-structured interviews and a focus group discussion were used to collect data. Participants were 22 clincal officers, nurse-midwives and midwifery students involved in maternity care. Data were analysed to identify themes and construct an analytical framework.ResultsDefinition and purpose of informed consent revolved around providing information, respecting women's autonomy and achieving legal protection. Due to fear of blame and litigation, health workers preferred written consent. Written consent requires active participation by the consenting individual and was perceived to transfer liability to that person. A woman's refusal to provide written informed consent may pose a dilemma for the health worker between doing good and respecting autonomy. To prevent such refusal, health workers said to only partially disclose surgical risks in order to minimize women's anxiety. Commonly perceived barriers to obtain a fully informed consent were labour pains, language barriers, women's lack of education and their dependency on others to make decisions.ConclusionsHealth workers are familiar with the principles around informed consent and aware of its advantages, but fear of blame and litigation, partial disclosure of risks and barriers to communication hamper the process of obtaining informed consent. Findings can be used to develop interventions to improve the informed consent process.

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Improving patient informed consent for haemophilia gene therapy: the case for change.

Project description: Not available

| S-EPMC10032461 | biostudies-literature