"I Always Vet Things": Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions.

BACKGROUND: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members. OBJECTIVE: There has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions. METHODS: Semistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. RESULTS: The findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors. CONCLUSIONS: Interviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy.

Creencias desadaptativas, estilos de afrontamiento y apoyo social como factores predictores de la vulnerabilidad psicopatológica en mujeres víctimas de agresión sexual / Maladaptive beliefs, coping strategies, and social support as predictive factors of psychopathological vulnerability in female victims of sexual assault

Se han recogido los principales factores de vulnerabilidad descritos en la literatura con objeto de comprobar su efecto sobre la sintomatología desarrollada en víctimas de agresión sexual. Las participantes fueron 77 mujeres víctimas de agresiones sexuales en la edad adulta que acudieron al Centro de Atención a Víctimas de Agresiones Sexuales (C.A.V.A.S.) de Madrid, entre los años 2010 y 2013. Los factores que mayor valor predictivo han presentado han sido: elevadas creencias desadaptativas sobre uno mismo, la creencia de control futuro o la realización de conductas preventivas y, como estrategias de afrontamiento, la planificación, el apoyo social instrumental y el uso de sustancias. En cuanto a los factores que han resultado ser predictores de un mejor ajuste destacan el control presente o control sobre la recuperación, la estrategia de autodistracción y la satisfacción con el apoyo social. Finalmente, se describen las implicaciones de los resultados y se sugieren futuras líneas de investigación

The main vulnerability factors subsequent to rape described in the literature have been included in this research to check their effects on the symptomatology developed in sexual assault victims. The participants were 77 women victims of sexual assaults when they were adults, attending the Victms of Sexual Assaults Centre (C.A.V.A.S.) in Madrid between 2010 and 2013. The factors with a higher predictive value were high maladaptive beliefs about one’s self, the belief about future control, or developing preventative behaviors; coping strategies include planning, instrumental social support, and substance use. Factors standing out as predictors of a better adjustment include present control or control over the recovery, self-distraction (as coping strategy), and satisfaction with the social support. Finally, implications of results are described and future directions of research are suggested

Anonymity versus privacy: selective information sharing in online cancer communities.

BACKGROUND: Active sharing in online cancer communities benefits patients. However, many patients refrain from sharing health information online due to privacy concerns. Existing research on privacy emphasizes data security and confidentiality, largely focusing on electronic medical records. Patient preferences around information sharing in online communities remain poorly understood. Consistent with the privacy calculus perspective adopted from e-commerce research, we suggest that patients approach online information sharing instrumentally, weighing privacy costs against participation benefits when deciding whether to share certain information. Consequently, we argue that patients prefer sharing clinical information over daily life and identity information that potentially compromises anonymity. Furthermore, we explore whether patients' prior experiences, age, health, and gender affect perceived privacy costs and thus willingness to share information. OBJECTIVE: The goal of the present study is to document patient preferences for sharing information within online health platforms. METHODS: A total of 115 cancer patients reported sharing intentions for 15 different types of information, demographics, health status, prior privacy experiences, expected community utility, and privacy concerns. RESULTS: Factor analysis on the 15 information types revealed 3 factors coinciding with 3 proposed information categories: clinical, daily life, and identity information. A within-subject ANOVA showed a strong preference for sharing clinical information compared to daily life and identity information (F1,114=135.59, P=.001, η(2)=.93). Also, adverse online privacy experiences, age, and health status negatively affected information-sharing intentions. Female patients shared information less willingly. CONCLUSIONS: Respondents' information-sharing intentions depend on dispositional and situational factors. Patients share medical details more willingly than daily life or identity information. The results suggest the need to focus on anonymity rather than privacy in online communities.

Morbilidad psiquiátrica en consumidores de cocaína y heroína reclutados en la comunidad / Psychiatric morbidity among cocaine and heroin users in the community

El consumo de drogas es un problema de salud pública. Entre los consumidores la presencia concomitante de trastornos mentales y abuso de sustancias son comunes. Este artículo examina los trastornos psiquiátricos que presentan jóvenes consumidores de cocaína y heroína, medidos con la World Mental Health Composite International Diagnostic Interview (WMH-CIDI).Se realizó una encuesta transversal de entrada a una cohorte de 1.266 jóvenes (18-30 años), consumidores regulares de cocaína y no heroína (705) y de 561 consumidores de heroína reclutados fuera de los servicios de salud en Barcelona, Madrid y Sevilla. Para evaluar los trastornos mentales se utilizó el WMH-CIDI, para medir el grado de dependencia la Severity of Dependence Scale (SDS), y para evaluar el apoyo social se utilizó el Cuestionario de Apoyo Social Funcional Duke-UNC. Se diagnosticó un trastorno mental al 43% de la muestra. Los diagnósticos más frecuentes fueron la depresión (37,5%) y la fobia específica (6,8%). Durante los últimos 12 meses, la prevalencia de trastorno mental en el grupo de heroína (26.4%) fue mayor que en el de cocaína (21.7%). Las variables relacionadas con la morbilidad psiquiátrica en la cohorte de cocaína fueron: el mayor número de días de consumo, las condiciones de vida inestables y el bajo apoyo social. En la cohorte de heroína, el ganar dinero a través de actividades ilegales, mientras que el consumo moderado de alcohol actuó como factor protector para la patología mental. En ambas cohortes, la morbilidad se asoció a haber recibido tratamiento psiquiátrico/psicológico durante los últimos 12 meses. Este estudio muestra una prevalencia relativamente alta de morbilidad psiquiátrica en consumidores de cocaína y heroína reclutados en entornos no clínicos. Para el futuro, son necesarios estudios que examinen las diferencias entre los patrones de consumo de cocaína y heroína y su asociación con las enfermedades mentales (AU)

Drug abuse is a serious public health problem. Moreover, co-occurring mental health and substance abuse disorders are common among drug users. This paper examines psychiatric disorders of young cocaine and heroin users using the World Mental Health Composite International Diagnostic Interview (WMH-CIDI). A cohort of 1266 young (18-30 years) current regular cocaine (705) and heroin (561) users were recruited outside the health services in Barcelona, Madrid and Seville, Spain. The WMH-CIDI was used to evaluate mental disorders; the Severity of Dependence Scale (SDS) measured the degree of dependence; and the Duke-UNC Functional Social Support Questionnaire (FSSQ) assessed social support, in a cross sectional study design. About 43% was diagnosed with a lifetime mental disorder. The most common diagnoses were depression (37.5%) and specific phobia (6.8%). During the last 12 months, prevalence rates were also slightly higher in heroin group (26.4%) than in cocaine cohort (21.7%). Every day cocaine consumption, having unstable living conditions and low social support were variables highly associated with psychiatric morbidity in cocaine cohort. In heroin cohort, earning money through illegal activities was associated with psychiatric morbidity, while the moderate use of alcohol acted as a protective factor for mental pathology. Morbidity was associated to having received psychiatric/psychological treatment during the last 12 months in both cohorts. This study has shown a relatively high prevalence of psychiatric morbidity in cocaine and heroin users recruited in non-clinical settings. Future studies examining differences between cocaine and heroin patterns of consumption associated with mental diseases are necessary (AU)

Reputación social, ajuste psicosocial y victimización entre adolescentes en el contexto escolar / Social reputation, psychosocial adjustment and adolescent peer victimization at the school context

El objetivo del presente trabajo fue analizar las relaciones entre la reputación social del adolescente -percibida e ideal-, la victimización entre iguales en el contexto escolar y determinadas variables de ajuste psicosocial, como la satisfacción con la vida, la autoestima, la sintomatología depresiva y la soledad. La muestra estuvo formada por 1319 adolescentes de edades comprendidas entre los 11 y los 16 años. Se utilizó un modelo de ecuaciones estructurales para analizar el efecto directo e indirecto de la reputación social en la victimización entre pares. Los resultados obtenidos indicaron que la reputación social del adolescente se relaciona tanto directa como indirectamente con la victimización escolar. Los efectos indirectos sugirieron que la autoestima, la sintomatología depresiva y la soledad median la relación entre la reputación social del adolescente y la victimización escolar. Finalmente, se discutieron estos resultados y sus implicaciones (AU)

The aim of this study was to analyse the relationship among adolescent’s social reputation -perceived and ideal-, peer victimization at the school context and some specific psychosocial adjustment variables such as life satisfaction, loneliness, depressive symptomatology and self-esteem. The sample was composed of 1319 adolescents aged from 11 to 16 years old. Structural equation modeling was carried out to examine the direct and indirect effect of social reputation on peer victimization. Results obtained indicated social reputation was related both directly and indirectly to peer victimization. The indirect effects suggested self-esteem, depressive symptomatology and loneliness mediated the relationship between the adolescent’s social reputation and peer victimization. Finally, these results and their implications were discussed (AU)

[Self-help groups conflicts of interest through sponsoring by the pharmaceutical industry]. / Interessenkonflikte der Selbsthilfe durch Pharma-Sponsoring.

Some patient and self-help groups accept financial support from the pharmaceutical industry and medical device manufacturers. For the industry, this constitutes an increasingly important product marketing component. The acceptance of material or other support triggers psychological mechanisms which endanger objective judgement without the persons involved realizing it. Thus, patient groups may evaluate drugs or devices in a positively distorted way.

[Provides a guide to self-treatment as ethically acceptable compensation for having participated in a psychiatry research project]. / Offrir un manuel d'auto-traitement en guise de compensation ethiquement acceptable pour avoir participé a un projet de recherche en psychiatrie.

Due to ethical constraints imposed by Research Ethics Board, it may be difficult to offer participants adequate compensations for their involvement in the study, or compensations that do not have a coercive impact on the participant's ability to refuse to participate. The current study aims at providing empirical data supporting an innovative solution: the provision of a self-help treatment manual. The samples consists of 33 adults (24 females, 9 males) aged between 20 and 59 and all suffering from pathological fear of heights. After participating in an experimental study, participants received a self-help manual to treat their acrophobia on their own. The severity of their claustrophobia was measured before and six months after participants were instructed on how to use the self-help book as a compensatory measure for their participation. Data also suggests that the participants were satisfied with the help provided in the self-treatment manual and that this is perceived in a positive way. To sum up, this study is not an outcome study for a new form of therapy; it simply offers researchers data supporting the use of an alternative compensatory measure. Indeed, using a self-help book represents an interesting solution.

Clinical practice standards and ethical issues applied to a virtual group intervention for spousal caregivers of people with Alzheimer's.

Advances in technology have improved access to health and social services by offering more abundant and convenient choices for clients. In particular, the use of technology for delivering services to older adults and their families offers new possibilities for service delivery, by reaching people who are often isolated, and have difficulty accessing traditional services. Despite the continued advances in technology development and its integration into healthcare delivery, health care practitioners need to consider how to adapt and uphold clinical practice standards and address ethical issues in an e-health environment. Given the gap in the literature with respect to discussing these issues, this paper illustrates relevant issues in the context of developing and evaluating an Internet-based intervention for spousal caregivers of persons with dementia. Based on a four year project, a psychotherapeutic group intervention was delivered via the Internet to three groups of spousal caregivers. This article identifies some of the key practice standards and ethical issues that arise when using computer technology to deliver a psychotherapeutic group intervention. The article will also provide examples of relevant issues related to maintaining practice standards and ethical procedures that need to be addressed during the application of a computer-based psychotherapeutic group intervention for spousal caregivers of people with dementia.