-
Chronic Illness Sep 2023Illness disclosure refers to when individuals with chronic illnesses make decisions to tell others about their disease. There is a lack of research on the complexity of... (Review)
Review
OBJECTIVE
Illness disclosure refers to when individuals with chronic illnesses make decisions to tell others about their disease. There is a lack of research on the complexity of disclosure among children and youth with chronic illnesses. We conducted a review of the literature to understand the process of disclosure among children and youth with chronic illnesses in the context of peer-based relationships.
METHODS
A narrative review was completed using three databases. The search yielded 11 articles that utilized various research designs.
RESULTS
Most of the literature was qualitative in nature. Most children and youth engaged in non-disclosure and concealment which is born out of fears of discrimination. Fewer children and youth engaged in unplanned disclosure, passive disclosure, partial disclosure, and open disclosure. Children and youth carefully consider who they are disclosing to and perceptions about other peoples' responses strongly impact disclosure. Children and youth disclose verbally, behaviorally, and in written form. Disclosure is associated with both positive and negative effects, such as confidence, self-advocacy, and distress.
DISCUSSION
Health providers and researchers should critically support disclosure and empower children and youth with the resources they need to be agents in their own disclosure decisions.
Topics: Humans; Adolescent; Child; Disclosure; Communication; Chronic Disease; Truth Disclosure
PubMed: 35787158
DOI: 10.1177/17423953221110152 -
Journal of the American Academy of... Dec 2019In keeping with the Journal's policies, we provide a listing of disclosures for all members of the editorial masthead and the ad hoc and guest editors (marked with an...
In keeping with the Journal's policies, we provide a listing of disclosures for all members of the editorial masthead and the ad hoc and guest editors (marked with an asterisk) as of October 3, 2019. This list, based on annually updated signed statements on file in the editorial office, includes all biomedical financial interests and potential conflicts of interest disclosed for the previous 24 months and the foreseeable future.
Topics: Conflict of Interest; Disclosure; Editorial Policies; Humans; Periodicals as Topic
PubMed: 31757400
DOI: 10.1016/j.jaac.2019.10.002 -
Clinical Psychology Review Dec 2020Nonsuicidal self-injury (NSSI) is a widespread mental health concern among adolescents and young adults. Despite the high rates of NSSI, emerging research suggests that... (Review)
Review
Nonsuicidal self-injury (NSSI) is a widespread mental health concern among adolescents and young adults. Despite the high rates of NSSI, emerging research suggests that many individuals may conceal the behavior from others, given the stigma around the behavior. Understanding the factors that promote or hinder disclosure, as well as the nature of NSSI disclosure experiences, is important, as positive disclosure experiences may foster social connectedness, promote formal help-seeking, and ultimately serve to reduce NSSI engagement. To consolidate the existing literature and inform best practices for responding to NSSI disclosures, an electronic review of the literature on NSSI disclosure was conducted using PsycINFO, PsycArticles, PubMed, and Google Scholar. Forty-one studies that met search inclusion criteria were identified. In the current review, rates of NSSI disclosures across different populations and to different confidantes are summarized, and potential facilitators and barriers for disclosure are considered. In addition, functions, impacts, and outcomes of NSSI disclosures to different confidantes are discussed. Following the review of the literature, limitations of the existing literature and recommendations for future research in the area of NSSI disclosure are presented. We conclude with a brief summary of best practices for responding to NSSI disclosures.
Topics: Adolescent; Disclosure; Humans; Self-Injurious Behavior; Young Adult
PubMed: 32891855
DOI: 10.1016/j.cpr.2020.101907 -
Pediatrics in Review Jan 2020
Topics: Disclosure; Guidelines as Topic; Humans; Medical Errors; Patient Rights; Pediatrics; United States
PubMed: 31894076
DOI: 10.1542/pir.2018-0228 -
The American Psychologist Apr 2018Sexual assault is a widespread problem on college campuses. In response, many institutions are developing policies mandating that certain employees report any student... (Review)
Review
Sexual assault is a widespread problem on college campuses. In response, many institutions are developing policies mandating that certain employees report any student disclosure of sexual assault to university officials (and, in some cases, to police), with or without the survivor's consent. These policies, conceptualized here as , have been prompted and shaped by federal law and guidance, including Title IX and The Clery Act. Proponents of compelled disclosure assert that it will increase reports-enabling universities to investigate and remedy more cases of sexual assault-and will benefit sexual assault survivors, university employees, and the institution. However, many questions remain unanswered. How broad (or narrowly tailored) are contemporary compelled disclosure mandates in higher education? Do any empirical data support assumptions about the benefits of these policies? Are there alternative approaches that should be considered, to provide rapid and appropriate responses to sexual violence while minimizing harm to students? The current article begins with an overview of federal law and guidance around compelled disclosure. Next, a content analysis of a stratified random sample of 150 university policies provides evidence that the great majority require most, if not all, employees to report student sexual assault disclosures. A review of the literature then suggests that these policies have been implemented despite limited evidence to support assumptions regarding their benefits and effectiveness. In fact, some findings suggest negative consequences for survivors, employees, and institutions. The article concludes with a call for survivor-centered reforms in institutional policies and practices surrounding sexual assault. (PsycINFO Database Record
Topics: Crime Victims; Disclosure; Humans; Sex Offenses; Students; Universities
PubMed: 29355356
DOI: 10.1037/amp0000186 -
Current Opinion in Psychology Feb 2020This review examines the current trends in understanding the impact of individuals' decisions to either disclose information or continue to conceal it. As a whole, the... (Review)
Review
This review examines the current trends in understanding the impact of individuals' decisions to either disclose information or continue to conceal it. As a whole, the evidence points to a relative benefit of disclosure over secret-keeping, but with clear cases, in which disclosure may be harmful. Advances in knowledge about factors that shape that impact, new research on the role verbal rumination with a partner following disclosure, and attention to the role of communal coping as an outcome of traumatic disclosures are addressed. In addition, recent re-conceptualization of secret-keeping, and investigations into the burden experienced by confidants are reviewed. Finally, a call for greater attention to the culture-specific impacts of disclosure decisions is made.
Topics: Decision Making; Disclosure; Humans; Self Disclosure; Social Behavior
PubMed: 31550636
DOI: 10.1016/j.copsyc.2019.08.015 -
The European Journal of Health... Jul 2019
Topics: Conflict of Interest; Disclosure; Humans
PubMed: 30607655
DOI: 10.1007/s10198-018-1028-5 -
The Journal of the American Academy of... Nov 2022Industry funding in medicine enhances physician training but can create bias influencing accurate reporting of outcomes. High rates of conflict of interest (COI)... (Review)
Review
INTRODUCTION
Industry funding in medicine enhances physician training but can create bias influencing accurate reporting of outcomes. High rates of conflict of interest (COI) disclosure have been found in orthopaedic surgery. However, industry-specific disclosures have not been investigated and small-value compensations previously excluded. Using the nerve allograft industry as a proxy to examine specific patterns of COI between physicians and industries relevant to their publications, we sought to evaluate patterns in industry-specific COI disclosure within the hand and upper extremity surgery literature.
METHODS
Literature search for primary studies using nerve allografts in the hand and upper extremity from 2013 to 2021 was conducted. Authors were cross-referenced with their publication's COI statement and payments recorded in the Open Payments Database (OPD). Only payments relevant to the topic or product presented in the publication were included. Payments in all OPD subdivisions were compared.
RESULTS
Fourteen studies with 14 first, 72 middle, and 14 senior authors were included. Disclosed and undisclosed payments totaled $2,848,196 and $2,509,397. Only 28% of the authors had completely accurate COI statements. Research and food and beverage comprised the highest and lowest average rates of accurate disclosure (93.8% and 24.9%). The value of accurately disclosed payments was significantly greater on a per-author basis among senior authors ( P < 0.001). Neither the value of undisclosed payments nor the rate of accurate disclosure differed by authorship position ( P = 0.904 and P = 0.350).
DISCUSSION
When examined in the context of industries specific to publication, the rate of correct COI disclosure is lower than previously reported with small-value compensation a major contributor. Areas of improvement include the following: (1) All authors should be held accountable for correct disclosure; (2) all forms of financial support should be reported; and (3) journals should independently verify disclosures to the OPD. OPD utilization may help verify correct reporting, especially when the industry is related to the area of study, in the interest of maintaining the highest editorial integrity.
Topics: Humans; Disclosure; Conflict of Interest; Authorship; Upper Extremity; Allografts
PubMed: 36001882
DOI: 10.5435/JAAOS-D-22-00326 -
Pediatrics Mar 2013Next-generation sequencing technologies will likely be used with increasing frequency in pediatric research. One consequence will be the increased identification of... (Review)
Review
Next-generation sequencing technologies will likely be used with increasing frequency in pediatric research. One consequence will be the increased identification of individual genomic research findings that are incidental to the aims of the research. Although researchers and ethicists have raised theoretical concerns about incidental findings in the context of genetic research, next-generation sequencing will make this once largely hypothetical concern an increasing reality. Most commentators have begun to accept the notion that there is some duty to disclose individual genetic research results to research subjects; however, the scope of that duty remains unclear. These issues are especially complicated in the pediatric setting, where subjects cannot currently but typically will eventually be able to make their own medical decisions at the age of adulthood. This article discusses the management of incidental findings in the context of pediatric genomic research. We provide an overview of the current literature and propose a framework to manage incidental findings in this unique context, based on what we believe is a limited responsibility to disclose. We hope this will be a useful source of guidance for investigators, institutional review boards, and bioethicists that anticipates the complicated ethical issues raised by advances in genomic technology.
Topics: Child; Disclosure; Genetic Research; Genomics; Humans; Incidental Findings; Sequence Analysis, DNA
PubMed: 23400601
DOI: 10.1542/peds.2012-0084 -
Orthopedics Jan 2010
Topics: Conflict of Interest; Disclosure; Editorial Policies; Humans; Scientific Misconduct
PubMed: 20052947
DOI: 10.3928/01477447-20100101-02