Confidentiality matters! Adolescent males' views of primary care in relation to psychosocial health: a structural equation modelling approach.

OBJECTIVE: To investigate to what degree adolescent males (1) value confidentiality, (2) experience confidentiality and are comfortable asking sensitive questions when visiting a general practitioner (GP), and (3) whether self-reported symptoms of poor mental health and health-compromising behaviours (HCB) affect these states of matters. DESIGN: Cross-sectional. SETTING: School-based census on life, health and primary care in Region Sörmland, Sweden. SUBJECTS: 2,358 males aged 15-17 years (response rate 84%). MAIN OUTCOME MEASURES: The impact of poor mental health and HCBs on adolescent males' valuing and experiencing private time with the GP, having professional secrecy explained, and being comfortable asking about the body, love and sex, analysed with structural equation modelling. RESULTS: Almost all respondents valued confidentiality regardless of their mental health or whether they engaged in HCBs: 86% valued spending private time with the GP, and 83% valued receiving a secrecy explanation. Among those who had visited a GP in the past year (n = 1,200), 74% had experienced private time and 42% a secrecy explanation. Three-quarters were at least partly comfortable asking sensitive questions. Adolescent males with HCBs were more likely to experience a secrecy explanation (approximative odds ratio [appOR] 1.26; p = 0.005) and to be comfortable asking about sex than their peers (appOR 1.22; p = 0.007). Respondents reporting experienced confidentiality were more comfortable asking sensitive questions (appOR 1.25-1.54; p ≤ 0.010). CONCLUSION: Confidentiality matters regardless of poor mental health or HCBs and makes adolescent males more comfortable asking sensitive questions. We suggest that GPs consistently offer private time and explain professional secrecy.Key PointsConfidentiality for adolescent males has been scantily studied in relation to mental health and health-compromising behaviours.In this study, most adolescent males valued confidentiality, regardless of their mental health and health-compromising behaviours.Health-compromising behaviours impacted only slightly, and mental health not at all, on experiences of confidentiality in primary care.When provided private time and an explanation of professional secrecy, adolescent males were more comfortable asking the GP sensitive questions.

Cultural Viewpoints of Nursing Students on Patient Privacy: A Qualitative Study.

The purpose of this study was to determine the feelings, thoughts, perceptions and cultural standpoint of nursing students concerning patient privacy. This study was conducted as a qualitative descriptive design. The homogeneous sampling method, purposive sampling method for qualitative research samples, was used to determine the study group. Data were collected from 17 nursing students at a state university in Turkey. Individual semi-structured interviews were conducted, and content analysis was used to analyze data. Three main themes emerged from the data: perception of privacy, factors affecting patient privacy and suggested solutions. Four sub-categories emerged: religion, gender, culture and reassuring communication. The perceptions of many of the students relating to the concept of privacy coincided with the concepts of confidentiality and all kinds of information concerning the patient. It was seen that the most effective intervention among the students' solution proposals to ensure privacy was the necessity to make physical improvements in hospitals.

The duty to warn at-risk relatives-The experience of genetic counselors and medical geneticists.

Studies published over 15 years ago surveyed genetic counselors (GC) and medical geneticists (MG) to examine their clinical experiences with the conflict of "duty to warn" versus patient confidentiality. Federal and state laws pertaining to medical professionals' duty to warn have since been implemented following the publications of these studies. Using a merged version of surveys employed in the prior studies, this study seeks to understand clinicians' current decision-making process when faced with patient refusal to inform at-risk relatives, as well as their familiarity with and opinions of laws and guidelines covering this issue. Consistent with the previous studies, the majority of MG and almost half of GC experience patient refusal. Significantly, fewer MG and GC believe they had a duty to warn their patients' relatives of genetic risk. Only 8% of participants believe current guidelines effectively address the issue of duty to warn. Participant awareness of federal or state laws regulating the disclosure of genetic information remains low. The conflict of duty to warn remains a shared experience among genetics professionals, and resources are needed to facilitate informed decision-making. Participants' opinions of current policies and clinical decisions may guide professional actions regarding duty to warn.

Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.

OBJECTIVES: The purpose of this study was to examine parental preferences for researchers accessing their child's electronic health record across 3 groups: those with a child with (1) a known genetic condition (fragile X syndrome FXS), (2) a suspected genetic condition (autism spectrum disorder [ASD]), and (3) no known genetic condition (typically developing). METHODS: After extensive formative work, a discrete choice experiment was designed consisting of 5 attributes, each with 2 or 3 levels, including (1) type of researcher, (2) the use of personally identifiable information, (3) the use of sensitive information, (4) personal importance of research, and (5) return of results. Stratified mixed logit and latent class conditional logit models were examined. RESULTS: Parents of children with FXS or ASD had relatively higher preferences for research conducted by nonprofits than parents of typically developing children. Parents of children with ASD also preferred research using non-identifiable and nonsensitive information. Parents of children with FXS or ASD also had preferences for research that was personally important and returned either summary or individual results. Although a few child and family characteristics were related to preferences, they did not overall define the subgroups of parents. CONCLUSIONS: Although electronic health record preference research has been conducted with the general public, this is the first study to examine the opinions of parents who have a child with a known or suspected genetic condition. These parents were open to studies using their child's electronic health record because they may have more to gain from this type of research.

HIV-positive Mozambican migrants in South Africa: loneliness, secrecy and disclosure.

South Africa continues to bear a heavy burden of HIV and a significant proportion of the nation's population consists of immigrants from other severely afflicted African nations. Yet little is known about how migrant populations respond to HIV in shifting cultural and clinical landscapes. Analysing 21 ethnographic life history interviews, this paper explores the social complexities of living with antiretroviral therapy and disclosure of serostatus among HIV-positive Mozambican migrants in Johannesburg. It focuses on (i) conceptualising the 'biosocial ambiance of illness'; (ii) how transformations occur in perceptions of disease; and (iii) how stigma produces an ambit of loneliness and secrecy, which inflects disclosure unevenly in different life-spaces and health-worlds. The net effect of these three processes is a silence which is detrimental to the social normalisation of HIV, treatment-seeking and clinical drug adherence, which in turn may increase rates of morbidity and mortality and contribute to drug resistance.

Family Secrecy in Family Therapy Practice: An Explorative Focus Group Study.

The aim of this focus group study was to explore the experiences of family therapists working with family secrecy. Our study highlights that family secrets present important and compelling challenges for family therapists. Furthermore, our study reveals that there seem to be some basic strategies family therapists use in dealing with these challenges in therapy sessions. One basic strategy is that family therapists try to guard their position of being a trustworthy therapist for each family member by avoiding becoming stuck in family secrecy. Furthermore, therapists explore ways to guide the family toward the disclosure of the secret in order to alleviate the toxicity of the secrecy. This highlights the importance of the systemic model and how influential this perspective is in family therapy practice. Some participants, however, have in addition a second strategy they sometimes use: talking with the family about secrecy without aiming to disclose the secret. In the discussion section of the article we reflect on the possibility that in the strategic choices family therapists make conceptual issues might be involved. Furthermore, we stress the importance of further research.

El propósito de este estudio de un grupo focal fue analizar las experiencias de los terapeutas familiares que trabajan con el secreto familiar. Nuestro estudio destaca que los secretos familiares presentan desafíos importantes y emocionantes para los terapeutas familiares. Además, nuestro estudio revela que parece haber algunas estrategias básicas que usan los terapeutas familiares a la hora de manejar estos desafíos en las sesiones de terapia. Una estrategia básica es que los terapeutas familiares tratan de proteger su postura de ser un terapeuta confiable para cada miembro de la familia evitando atascarse en el secreto familiar. Es más, los terapeutas analizan maneras de guiar a la familia hacia la revelación del secreto a fin de aliviar la toxicidad del misterio. Esto destaca la importancia del modelo sistémico y cuán influyente es esta perspectiva en la práctica de la terapia familiar. Sin embargo, algunos participantes tienen además una segunda estrategia que a veces usan: hablar con la familia acerca del secreto sin pretender que se revele el secreto. En la sección de debate del artículo, reflexionamos sobre la posibilidad de que en las elecciones estratégicas que hacen los terapeutas familiares podrían estar implicados aspectos conceptuales. Por otro lado, subrayamos la importancia de continuar investigando.

Secrets on both sides of the couch.

This paper considers omissions and lies in the consulting room, discussing what is known about the nature, extent, and underlying causes of therapists' deceptions and secrets. The author offers clinical vignettes to illustrate common omissions and deceptions, considers potential ramifications thereof, and concludes with recommendations for clinical practice.

Self-concealment and suicidality: Mediating roles of unmet interpersonal needs and attitudes toward help-seeking.

OBJECTIVE: We investigated the relationship between self-concealment-a tendency to hide distressing information-and suicidality, via two mediators: (a) unmet interpersonal needs and (b) help-seeking attitudes. METHOD: A sample of young adults (18-25 years) was recruited online to complete a self-report survey questionnaire (n = 245). A parallel multiple mediation model was analyzed using the PROCESS macro (Hayes, 2013, Methodology in the social sciences. Introduction to mediation, moderation, and conditional process analysis: A regression-based approach. New York, NY: Guilford Press) in SPSS. RESULTS: There was a significant positive relationship between self-concealment and suicidality. This relationship was partially mediated by unmet interpersonal needs. Although self-concealment was associated with more negative attitudes toward seeking professional psychological help, these help-seeking attitudes were not significantly related to suicidality. CONCLUSIONS: Our results highlight the importance of interpersonal factors in suicide. Unmet interpersonal needs emerged as a mechanism by which self-concealment contributes to increased suicidality. We review implications for research, clinical practice, and prevention.

A Longitudinal Examination of the Relation Between Lie-Telling, Secrecy, Parent-Child Relationship Quality, and Depressive Symptoms in Late-Childhood and Adolescence.

Lie-telling and secret-keeping are common behaviors during adolescence. Given the importance of honesty for building trust in positive relationships, the present study examined relations between lie-telling, secret-keeping, and relationship quality over time. Additionally, given the protective role of positive relationships in developing depression, the present study examined how lying to and keeping secrets from parents related to depressive symptoms over time. Children and adolescents (N = 1313; 8 to 15 years old at Time 1, Mage= 11.65, SD = 11.75; 50.04% male) reported on lying to parents, secret-keeping from parents, relationship quality with parents, and depressive symptoms at two time points one year apart. The results indicated that greater secret-keeping was bidirectionally associated with poorer parent-child relationship quality and greater depressive symptoms over time. Thus, keeping secrets from parents appears to be an important behavior to examine in the context of development between late childhood and adolescence.

Privacy, confidentiality, security and patient safety concerns about electronic health records.

AIMS: This study explored concerns among nurses working in the United Arab Emirates associated with the use of electronic health records, including privacy, confidentiality, security and patient safety. BACKGROUND: Given the widespread implementation of electronic health records, there are concerns about data integrity that could jeopardize healthcare quality. Addressing nurses' concerns about data integrity and safety is critical to inform health policies and promote public trust. METHODS: Nurses working in healthcare settings in the United Arab Emirates (N = 562) were invited to share their concerns about data integrity and patient safety using a mixed-method approach. Data were collected between January and June 2018 via questionnaires and focus group interviews. Following a survey of nurses' concerns about privacy, confidentiality, security and patient safety in electronic health records, six focus groups were held to gain deeper insights about their concerns. Major themes that emerged from the focus groups were extracted to align with the main sections of the questionnaire. RESULTS: Nurses expressed concern over the security of electronic health records (n = 270, 48%). Administrative-related security, inadequate training and access by unauthorized users were the most frequently reported concerns. The main patient safety concerns were associated with non-technological factors, including lack of audit by staff, poor communication with technology vendors and length of time required for documentation. The focus group results reflected similar issues, with an additional theme being inconsistency in data integrity policies. CONCLUSIONS AND IMPLICATIONS FOR NURSING/HEALTH POLICY: Frontline nurse managers need to integrate pragmatic policies to support staff compliance with the code of ethics when using online data. Nurses must follow workplace policies that foster reporting of risks to online incident systems to ensure data integrity. A unified health policy based on multidisciplinary partnership is critical to safeguard online data and promote public trust.

Preferences for HIV testing services among men who have sex with men in the UK: A discrete choice experiment.

BACKGROUND: In the UK, approximately 4,200 men who have sex with men (MSM) are living with HIV but remain undiagnosed. Maximising the number of high-risk people testing for HIV is key to ensuring prompt treatment and preventing onward infection. This study assessed how different HIV test characteristics affect the choice of testing option, including remote testing (HIV self-testing or HIV self-sampling), in the UK, a country with universal access to healthcare. METHODS AND FINDINGS: Between 3 April and 11 May 2017, a cross-sectional online-questionnaire-based discrete choice experiment (DCE) was conducted in which respondents who expressed an interest in online material used by MSM were asked to imagine that they were at risk of HIV infection and to choose between different hypothetical HIV testing options, including the option not to test. A variety of different testing options with different defining characteristics were described so that the independent preference for each characteristic could be valued. The characteristics included where each test is taken, the sampling method, how the test is obtained, whether infections other than HIV are tested for, test accuracy, the cost of the test, the infection window period, and how long it takes to receive the test result. Participants were recruited and completed the instrument online, in order to include those not currently engaged with healthcare services. The main analysis was conducted using a latent class model (LCM), with results displayed as odds ratios (ORs) and probabilities. The ORs indicate the strength of preference for one characteristic relative to another (base) characteristic. In total, 620 respondents answered the DCE questions. Most respondents reported that they were white (93%) and were either gay or bisexual (99%). The LCM showed that there were 2 classes within the respondent sample that appeared to have different preferences for the testing options. The first group, which was likely to contain 86% of respondents, had a strong preference for face-to-face tests by healthcare professionals (HCPs) compared to remote testing (OR 6.4; 95% CI 5.6, 7.4) and viewed not testing as less preferable than remote testing (OR 0.10; 95% CI 0.09, 0.11). In the second group, which was likely to include 14% of participants, not testing was viewed as less desirable than remote testing (OR 0.56; 95% CI 0.53, 0.59) as were tests by HCPs compared to remote testing (OR 0.23; 95% CI 0.15, 0.36). In both classes, free remote tests instead of each test costing £30 was the test characteristic with the largest impact on the choice of testing option. Participants in the second group were more likely to have never previously tested and to be non-white than participants in the first group. The main study limitations were that the sample was recruited solely via social media, the study advert was viewed only by people expressing an interest in online material used by MSM, and the choices in the experiment were hypothetical rather than observed in the real world. CONCLUSIONS: Our results suggest that preferences in the context we examined are broadly dichotomous. One group, containing the majority of MSM, appears comfortable testing for HIV but prefers face-to-face testing by HCPs rather than remote testing. The other group is much smaller, but contains MSM who are more likely to be at high infection risk. For these people, the availability of remote testing has the potential to significantly increase net testing rates, particularly if provided for free.

Why "Reply All" Can Push All the Wrong Buttons.

Technology has changed the way medicine is practiced. This commentary considers the effect of digital communications and offers advice on e­mail etiquette.

Secretive eating and binge eating following bariatric surgery.

OBJECTIVE: Some individuals eat furtively and conceal evidence of eating, and this seems to occur beyond binge-eating episodes. This type of secretive eating is common among youth and emerging evidences suggests that it is a relevant marker of eating disorder psychopathology among adults with significant eating and weight concerns. METHOD: We assessed secretive eating, loss-of-control (LOC) eating, and eating disorder psychopathology using investigator-based interviews among treatment-seeking adults experiencing LOC eating following bariatric surgery (N = 168). Participants also completed an established depression measure; height and weight were measured. RESULTS: Overall, 37% of patients reported secretive eating: 54% of patients who met criteria for binge-eating disorder except for the size criterion ("bariatric BED") and 25% of patients with subthreshold bariatric BED reported secretive eating. Many clinical variables were higher among patients with secretive eating compared to those without secretive eating; however, only eating disorder psychopathology severity and body dissatisfaction remained significantly higher among patients with secretive eating compared to those without when bariatric BED status was also included as a variable in the model. DISCUSSION: Findings suggest that among post-bariatric surgery patients with LOC eating, secretive eating signals more severe eating disorder psychopathology overall and specifically related to dissatisfaction with weight and shape. Bariatric BED status, however, has a stronger association than secretive eating with many clinical variables. Secretive eating should be assessed and considered when addressing weight and shape concerns among patients experiencing LOC eating after bariatric surgery.

Parental Perceptions of Displayed Patient Data in a PICU: An Example of Unintentional Empowerment.

OBJECTIVES: To explore the perceptions of parents of pediatric patients in a PICU regarding real-time open electronic health record data displayed in patient rooms. DESIGN: Cross-sectional qualitative interview study. SETTING: PICU in a large Midwestern tertiary-care children's hospital. SUBJECTS: Parents of patients in a PICU (n = 33). MEASUREMENTS AND MAIN RESULTS: Qualitative data were collected through in-person semi-structured, individual, and small-group interviews. Data were collected from March 2016 to July 2016, with approval from the study hospital's institutional review board. Data were analyzed using inductive thematic analysis. Results included positive effects of accessing real-time open electronic health record data on family empowerment, situation awareness, potential error detection, understanding of medical data, and facilitating discussions during rounds. Concerns were reported regarding privacy of information as well as potential misinterpretation of displayed data. We identified several ways to improve this collaborative technology to make it more family-centered. CONCLUSIONS: This study suggests that a new health information technology system providing continuous access to open electronic health record data may be an effective way to empower and engage parents in the PICU, but potential drawbacks were also noted. The results also provide insights into the collaborative use of health information technology in the PICU setting.

"Yes they have the right to know, but ": Young Adult Women Managing Private Health Information as Dependents.

This study explored how young adult women manage privacy regarding their health information as dependents on a parent's insurance policy. Under current and proposed health care reform in the United States, young adults between the ages of 18 and 26 years can remain on a parent's policy as a dependent, which can improve young adult's access to health care services. Although dependent expansion provisions can improve coverage for young adults, it may also threaten their privacy by giving a parent access to adult-child's private health information. Using Communication Privacy Management, this study investigated how dependent young adult women conceptualize and negotiate information ownership with parents in a forced disclosure situation. Results revealed young adult women either felt they alone should own and control their health information or believed a parent as the policy hold should have access to the information. However, all preferred to be in control of the disclosure and used core and catalyst criteria to manage the privacy dilemma current health care policy creates. Specifically, the threat of a parent seeing an adult-child used a stigmatized health service motivated young adult women to engage in deception, pay out of pocket for services covered by insurance, and put off or avoid health care. Results of this study complicate assumptions about privacy management and demonstrate how health care policy affects family communication.

"I Will Communicate With You, But Let Me Be In Control": Understanding How Parents Manage Private Information About Their Chronically Ill Children.

Parents have a significant role in the management of a child's chronic condition. Parents are often the only consistent individuals managing a child's health across his or her childhood and adolescence (e.g., present for all appointments and medical procedures). Many of the responsibilities required of parents involve communication work, where parents must strategically and actively design messages as they interact with medical professionals, other family, and friends. Using communication privacy management theory, we analyzed interviews conducted with 35 parents to understand the motivations and strategies involved in their regulation of information about their child's chronic condition. These findings have important practical implications because parental involvement in a chronically ill child's care has direct effects on familial adaptation and adjustment.

A Failed Method? Reflections on Using Audio Diaries in Uganda With Young People Growing Up With HIV in the BREATHER Trial.

In this article, we present a case study in which we consider our use of the audio diary method with young people (aged 10-24) living with HIV in Uganda in a longitudinal qualitative study conducted in a clinical randomized control trial. Despite initial enthusiasm for the method among participants to capture accounts of participants' experiences outside of the confines of the HIV clinic, the constraints the young people encountered in accessing sufficient privacy to confidently make recordings meant that no one elected to use them again in the study. Despite the insights the use of the method generated, the lack of acceptability led to its relative failure. This demonstrates that despite the call for innovation, there is an unwavering necessity when selecting methods that they align with the needs and preferences of our participants and with an attentive assessment of the local context in which illness narratives are produced.

Associations Between Secret-Keeping and Quality of Life in Older Adults.

This study examined the effects of secrecy on quality of life in a sample consisting of older adults (>50 years; N = 301). Three key components of secrecy were examined with the Tilburg Secrecy Scale-25 (TSS25; possession of a secret, self-concealment, and cognitive preoccupation). The TSS25 distinguishes between the tendency to conceal personal information (self-concealment) and the tendency to worry or ruminate about the secret (cognitive preoccupation), thereby enabling investigation of the effects of secrecy on quality of life in detail. Confirming previous findings in younger samples, we found a positive effect of possession of a secret on quality of life, after controlling for both TSS25's self-concealment and cognitive preoccupation. This suggests that keeping secrets may have a positive association with quality of life in older adults as well, as long as they do not have the tendency to self-conceal and are not cognitively preoccupied with their secret.

Sharing De-identified Medical Images Electronically for Research: A Survey of Patients' Opinion Regarding Data Management.

PURPOSE: Secondary usage of patient data has recently become of increasing interest for the development and application of computer analytic techniques. Strict oversight of these data is required and the individual patients themselves are integral to providing guidance. We sought to understand patients' attitudes to sharing their imaging data for research purposes. These images could provide a great wealth of information for researchers. METHODS: Patients from the Greater Toronto Area attending Sunnybrook Health Sciences Centre for imaging (magnetic resonance imagining, computed tomography, or ultrasound) examination areas were invited to participate in an electronic survey. RESULTS: Of the 1083 patients who were approached (computed tomography 609, ultrasound 314, and magnetic resonance imaging 160), 798 (74%) agreed to take the survey. Overall median age was 60 (interquartile range = 18, Q1 = 52, Q3 = 70), 52% were women, 42% had a university degree, and 7% had no high school diploma. In terms of willingness to share de-identified medical images for research, 76% were willing (agreed and strongly agreed), while 7% refused. Most participants gave their family physicians (73%) and other physicians (57%) unconditional data access. Participants chose hospitals/research institutions to regulate electronic images databases (70%), 89% wanted safeguards against unauthorized access to their data, and over 70% wanted control over who will be permitted, for how long, and the ability to revoke that permission. CONCLUSIONS: Our study found that people are willing to share their clinically acquired de-identified medical images for research studies provided that they have control over permissions and duration of access.

Perspectives of Young Child Abuse Survivors on Confidentiality: An Exploratory Literature Review.

The current systematic narrative literature review sought to discover the views of young child sexual abuse (CSA) survivors, unknown to child protection services, on confidentiality. Due to the paucity of research on young CSA survivors, the review was widened to include users of sexual health services. Seventeen databases were searched, and results were refined by reading titles and abstracts, followed by full text. Analysis involved an exploratory interpretist approach to identify conceptual themes and research methodologies. Fifteen published papers were identified. Research methods were narrow and included surveys, interviews, and focus groups, with limited youth participation. In addition to the theme of confidentiality essential to this study, themes identified included - needing accurate information about services, the importance of someone non-judgemental to talk to, control over decisions affecting their lives, and better access to services. Studies indicated young people were fearful of child protection involvement. In conclusion, studies suggest young survivors unknown to child protection services need a higher level of confidential services and more control of their information. Further research involving young survivors in participatory methods is needed to explore issues of confidentiality, survivor participation, and fear of child protection agencies.