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Research on Child and Adolescent... May 2022Disclosure of self-injurious thoughts and behaviors (SITBs) is critical to current treatment and prevention programs. Limited research has examined patterns of and...
Disclosure of self-injurious thoughts and behaviors (SITBs) is critical to current treatment and prevention programs. Limited research has examined patterns of and barriers to SITB disclosure in adolescents. This work is critical given the limits of confidentiality in this population. Over 1,000 adolescents aged 13-17 with a history of mental health treatment and SITBs were recruited online. Participants reported their history with disclosing SITBs across a range of relationships, honesty in and barriers to disclosure to health care providers, and their experiences with breaches of confidentiality to parents/guardians. We examined relationships among these experiences and a range of outcomes, including perceived likelihood of future disclosure. Participants reported most frequent disclosure of all SITBs to friends, and more frequent disclosure of nonsuicidal self-injury compared to suicide ideation or attempts. Adolescents were most likely to disclose SITBs when directly asked by health care providers, though many participants reported continued SITB concealment. The most commonly endorsed barrier to disclosure was fear that the provider would tell a parent/guardian. Experiences with confidentiality breaches involving a non-collaborative breach were negatively associated with future disclosure, mental health symptoms, and adolescent-parent relationships. SITB disclosure is a cornerstone to their treatment and prevention. Better understanding of to whom and when, barriers, and the impact of disclosure experiences is critical. Our research suggests that most adolescents do not want their parents to know about their SITBs, and that fear of parent involvement prevents disclosure. Results have several implications for SITB assessment across physical and mental healthcare settings.
Topics: Adolescent; Disclosure; Humans; Mental Disorders; Mental Health; Self-Injurious Behavior; Suicidal Ideation
PubMed: 34705197
DOI: 10.1007/s10802-021-00878-x -
European Journal of Clinical... Sep 2022The need for highly effective therapies in rheumatologic diseases has led to the widespread and growing use of a heterogeneous class of molecules called biological... (Review)
Review
BACKGROUND
The need for highly effective therapies in rheumatologic diseases has led to the widespread and growing use of a heterogeneous class of molecules called biological agents. The increasing experience with biological agents has raised concerns about safety and efficacy issues that need to be discussed in the informed consent acquisition process.
METHODS
The authors performed a review of the literature on biological agents focusing on their most important characteristics concerning the informed consent procedures.
RESULTS
No studies specifically addressed the issue of informed consent in patients receiving biological agents. Several studies reported data about off-label use of biological agents usually with no obvious attention to informed consent shortcomings.
CONCLUSION
The reported association between biological agents and serious infections or malignancies, including reactivation of latent tuberculosis, needs specific disclosure in informed consent acquisition, together with information about the possible efficacy in clinical contexts often characterized by resistance to previous treatments. Ethical and clinical issues bound to the need for experimenting with new agents with potentially serious adverse effects deserve specific attention. Studies aimed at evaluating mental capacity to consent in subjects receiving biological agents are required.
Topics: Biological Factors; Disclosure; Humans; Informed Consent; Rheumatology
PubMed: 35488744
DOI: 10.1111/eci.13805 -
AIDS Care Mar 2023Disclosure to children living with HIV (CLHIV) about their own status is associated with positive outcomes such as treatment adherence, but prior cross-sectional studies...
Disclosure to children living with HIV (CLHIV) about their own status is associated with positive outcomes such as treatment adherence, but prior cross-sectional studies in sub-Saharan Africa report disclosure rates of <50%. This study aims to assess pediatric disclosure over time. 548 CLHIV were followed from 2/2013-4/2018 in Johannesburg, South Africa. Cumulative incidence of disclosure was calculated with Kaplan-Meier analysis, and disclosure characteristics assessed with a Cox model. By end of follow-up, cumulative disclosure was 70.3% (95% confidence interval: 60.0-79.9). Median age at disclosure was 9 years (range: 3-13). Baseline predictors of disclosure included older child age and the child having a history of going hungry. Prior to disclosure, 98.0% of caregivers who disclosed had conversed with their child about their illness or an HIV-related topic, or their child had asked about HIV, versus 88.6% of caregivers who never disclosed. While many children did not receive disclosure during this relatively large, longitudinal study of South African CLHIV, caregivers who had not yet disclosed may have been preparing to do so by discussing their child's health or HIV generally with their child. This highlights the need for clinicians to consistently support caregivers throughout the incremental disclosure process.
Topics: Humans; Child; Adolescent; Child, Preschool; Disclosure; South Africa; Longitudinal Studies; HIV Infections; Cross-Sectional Studies; Truth Disclosure; Caregivers
PubMed: 34930060
DOI: 10.1080/09540121.2021.2017397 -
Dementia (London, England) Oct 2023People living with dementia can feel hesitant disclosing their diagnosis to social networks, partly due to stigma. Little attention has been paid to the measurement of...
OBJECTIVES
People living with dementia can feel hesitant disclosing their diagnosis to social networks, partly due to stigma. Little attention has been paid to the measurement of disclosure decisions and stigma, and few standardised stigma tools have been validated in languages other than English. We investigated the psychometric properties of Dutch translations of three stigma measures, and explored the stigma experiences of Dutch and English people living with dementia as well as patterns and predictors of comfort with disclosure.
METHODS
Community-dwelling adults living with dementia in the Netherlands ( = 40) and England ( = 40) completed either the English versions or the Dutch translations of the Comfort with Disclosure scale and three stigma measures (Stigma Impact, Stigma Stress, and Secrecy Scale). We established the psychometric properties of the stigma measures and conducted correlation and regression analyses.
RESULTS
Internal consistency was good to excellent for all measures in the Dutch sample. Small but significant differences were found between the Dutch and English samples on the total score of the Stigma Impact Scale and its subscale social isolation. Age was negatively associated with comfort disclosing to family, and desire for secrecy was negatively associated with comfort disclosing to both family and friends.
CONCLUSIONS
The psychometric properties of the Dutch scales were satisfactory. Many people living with dementia would feel comfortable disclosing their diagnosis to family and friends, but stigma experiences can greatly affect this decision. Cross-cultural differences in stigma experiences in persons with dementia require further investigation.
Topics: Adult; Humans; Disclosure; Dementia; Ethnicity; Language; Emotions
PubMed: 37480343
DOI: 10.1177/14713012231188503 -
Sultan Qaboos University Medical Journal Aug 2021This report aims to investigate the attitudes of physicians in Jordan towards non-disclosure of health information among physicians, with a focus on those who are...
OBJECTIVES
This report aims to investigate the attitudes of physicians in Jordan towards non-disclosure of health information among physicians, with a focus on those who are 'always truthful' and those who are not.
METHODS
The report is based on the second subset of data from a cross-sectional study-conducted between January and August 2016-of the truth disclosure practices among and attitudes of physicians in Jordan. The sample consisted of 240 physicians selected from four major hospitals by stratified random sampling and invited to complete a self-administered questionnaire regarding truth disclosure attitudes. The attitudes of physicians who were 'always truthful' were compared with those who were not.
RESULTS
A total of 164 physicians (response rate: 68%) completed the questionnaire. Of these, 17 (10%) were 'always truthful', while the remaining 144 (90%) were not. Physicians who were 'always truthful' were more likely to indicate that non-disclosure is 'unethical' (77% versus 39%; = 0.009). Moreover, physicians who were 'always truthful' were more likely to disagree that non-disclosure is beneficial for the physical and psychological health of patients (82% versus 55%; = 0.03). Most of the surveyed physicians agreed that all patients have the right to know their diagnosis, most patients prefer to know their diagnosis and the introduction of legislation to enforce disclosure would positively affect medical practice in Jordan.
CONCLUSION
The differential attitudes of physicians who were 'always truthful' and those who were 'not always truthful' suggests a rationale behind independent non-disclosure; namely, that non-disclosure is ethically justifiable and beneficial for the physical and psychological health of patients.
Topics: Attitude; Cross-Sectional Studies; Humans; Jordan; Physicians; Truth Disclosure
PubMed: 34522408
DOI: 10.18295/squmj.4.2021.005 -
Social Psychiatry and Psychiatric... Sep 2021Honest, Open, Proud (HOP; formerly "Coming Out Proud"/COP) is a peer-led group program to support people with mental illness in their disclosure decisions and in their... (Meta-Analysis)
Meta-Analysis Review
Honest, Open, Proud to support disclosure decisions and to decrease stigma's impact among people with mental illness: conceptual review and meta-analysis of program efficacy.
PURPOSE
Honest, Open, Proud (HOP; formerly "Coming Out Proud"/COP) is a peer-led group program to support people with mental illness in their disclosure decisions and in their coping with stigma. The aims of this study were to provide (i) a conceptual review of HOP, including versions for different target groups and issues related to outcome measurement and implementation; and (ii) a meta-analysis of program efficacy.
METHODS
Conceptual and empirical literature on disclosure and the HOP program was reviewed. Controlled trials of HOP/COP were searched in literature databases. A meta-analysis of HOP efficacy in terms of key outcomes was conducted.
RESULTS
HOP program adaptations for different target groups (e.g. parents of children with mental illness; veterans or active soldiers with mental illness) exist and await evaluation. Recruitment for trials and program implementation may be challenging. A meta-analysis of five HOP RCTs for adults or adolescents with mental illness or adult survivors of suicide attempts found significant positive effects on stigma stress (smd = - 0.50) as well as smaller, statistically non-significant effects on self-stigma (smd = - 0.17) and depression (smd = - 0.11) at the end of the HOP program. At 3- to 4-week follow-up, there was a modest, not statistically significant effect on stigma stress (smd = - 0.40, 95%-CI -0.83 to 0.04), while effects for self-stigma were small and significant (smd = - 0.24). Long-term effects of the HOP program are unknown.
CONCLUSION
There is initial evidence that HOP effectively supports people with mental illness in their disclosure decisions and in their coping with stigma. Implementation issues, future developments and public health implications are discussed.
Topics: Adaptation, Psychological; Adolescent; Adult; Child; Disclosure; Humans; Mental Disorders; Peer Group; Social Stigma
PubMed: 33893512
DOI: 10.1007/s00127-021-02076-y -
Einstein (Sao Paulo, Brazil) 2022To analyze current scientific knowledge about communication of bad news by nurses. (Review)
Review
OBJECTIVE
To analyze current scientific knowledge about communication of bad news by nurses.
METHODS
This is an integrative literature review carried out by searching articles published in national and international journals indexed at SciELO, MEDLINE® (PubMed®), Scopus, Bireme and CINAHL, from 2010 to 2020, by crossing the controlled descriptors "communication", "revelation of the truth", and "nursing", and the uncontrolled descriptor "bad news".
RESULTS
Ten articles with qualitative and cross-sectional design, as well as case reports were included. The analysis indicated the evidence available in the literature showed the nurses' lack of ability to communicate bad news, although they are professionals who have close contact with patients and families and who establish a strong bond with them, and often face challenging situations for communicating bad news.
CONCLUSION
There is an evident need to invest in training of nurses on skills to communicate bad news and establish a nurse-patient bond when dialoguing with the family. There are few studies in the literature addressing this issue; therefore, it is recommended to perform research that can contribute to improvements in the clinical practice and developing protocols to promote such care.
Topics: Cross-Sectional Studies; Humans; Truth Disclosure
PubMed: 35894377
DOI: 10.31744/einstein_journal/2022RW6632 -
Genetics in Medicine : Official Journal... Feb 2022
Topics: Disclosure; Genomics; Humans
PubMed: 34906468
DOI: 10.1016/j.gim.2021.10.003 -
Journal of Empirical Research on Human... 2020Linked survey and Twitter data present an unprecedented opportunity for social scientific analysis, but the ethical implications for such work are complex-requiring a...
Linked survey and Twitter data present an unprecedented opportunity for social scientific analysis, but the ethical implications for such work are complex-requiring a deeper understanding of the nature and composition of Twitter data to fully appreciate the risks of disclosure and harm to participants. In this article, we draw on our experience of three recent linked data studies, briefly discussing the background research on data linkage and the complications around ensuring informed consent. Particular attention is paid to the vast array of data available from Twitter and in what manner it might be disclosive. In light of this, the issues of maintaining security, minimizing risk, archiving, and reuse are applied to linked Twitter and survey data. In conclusion, we reflect on how our ability to collect and work with Twitter data has outpaced our technical understandings of how the data are constituted and observe that understanding one's data is an essential prerequisite for ensuring best ethical practice.
Topics: Computer Security; Data Collection; Data Curation; Disclosure; Ethics, Research; Humans; Informed Consent; Privacy; Research Design; Social Media; Surveys and Questionnaires
PubMed: 31220995
DOI: 10.1177/1556264619853447 -
Canadian Medical Education Journal Jun 2023
Topics: Truth Disclosure; Communication
PubMed: 37465734
DOI: 10.36834/cmej.76145