When cancer cannot be cured: A qualitative study on relationship changes in couples facing advanced melanoma.

OBJECTIVE: The aim of this qualitative study was to gain a deeper understanding about couples' relationship changes over time (the first six months) after one partner is diagnosed with an incurable advanced melanoma (stage III or IV). METHOD: In semistructured interviews, eight patients and their partners were asked separately about potential changes in their relationship since diagnosis. The same questions were asked again six months later, but focusing on relationship changes over the preceding six months. Some 32 audiotaped interviews were analyzed applying qualitative content analysis. RESULTS: At baseline (t1), relationship changes were mostly reported in terms of caring, closeness/distance regulation, and communication patterns. While changes in caregiving and distance/closeness regulation remained main issues at six months follow-up (t2), greater appreciation of the relationship and limitations in terms of planning spare time also emerged as major issues. Unexpectedly, 50% of patients and partners reported actively hiding their negative emotions and sorrows from their counterparts to spare them worry. Furthermore, qualitative content analysis revealed relationship changes even in those patients and partners who primarily reported no changes over the course of the disease. SIGNIFICANCE OF RESULTS: Our findings revealed a differentiated and complex picture about relationship changes over time, which also might aid in the development of support programs for couples dealing with advanced cancer, focusing on the aspects of caring, closeness/distance regulation, and communication patterns.

Adolescent perspectives on social support received in the aftermath of sexual abuse: a qualitative study.

The extent and quality of social support provided to young survivors of sexual abuse (SA) have only rarely been examined. This qualitative study aimed to investigate adolescent perspectives on social support received in the aftermath of SA. A total of 26 sexually victimized adolescents (15-18 years old) participated in a qualitative face-to-face, in-depth interview that focused on perceived social support. Qualitative content analysis was conducted as per Mayring (2008) using the qualitative data analysis program ATLAS.ti. In addition, quantitative correlational analyses were conducted to identify characteristics of SA and their associations with perceived social support. Although participants perceived parental support as the most necessary type of support, they were much more satisfied with support from peers. In particular, adolescents stated that they wished they had received more emotional support from their parents in order to better cope with the abuse. About half of participants reported having received counseling, and counseling was seen as very helpful in dealing with the consequences of SA. Only a few adolescents mentioned their school as a source of support. Intra-familial abuse, younger victim age at the time of abuse, an adult perpetrator, and severe abuse were all negatively associated with satisfaction with perceived support. Our results suggest that support for young survivors of SA needs to be improved. Prevention of SA needs particular focus on improving parental reactions to SA, facilitating access to professional support, and raising teacher awareness of the importance of their role in the provision of support for sexually victimized children.

Quality of life and associated factors in Swiss trans people: a cross-sectional study.

Background: Experiences of stressful life events during transition may have a negative impact on quality of life (QoL) in trans persons. Little attention has been paid to this population in Switzerland, resulting in sparse data on their QoL and associated social factors. Methods: 30 participants were recruited during their medical transition treatment and surveyed on their experiences within this time period (13 months after the first medical intervention on average). After performing a diagnostic interview to evaluate their mental health, health-related QoL, psychological distress, self-esteem and the impact of life events that occurred in the last six months on participants were further assessed. Results: Approximately 17% of participants had suffered from major depression, 43% reported having had suicidal thoughts or having attempted suicide, and 43% suffered from an anxiety disorder. Psychological distress was twice as high compared to the norm values of the cis population. With regard to QoL, trans individuals showed impairments in the mental domain. Stressful life events were particularly evident on a psychological and social level. Analysis showed a negative correlation between impact of life events and mental QoL and between psychological distress and mental QoL. At the same time, there was a positive correlation between self-esteem and mental QoL. Psychological distress and self-esteem emerged as independent significant predictors of mental QoL. Conclusion: This study shows lowered mental QoL and associations of low mental QoL with psychological distress, low self-esteem and stressful life events in trans individuals in Switzerland. The findings concur with the Gender Minority Stress Model and point out that medical transition must not be viewed in isolation but must be embedded in the framework of integrative psychosocial support.

Sexual quality of life of individuals with 46,XY disorders of sex development.

INTRODUCTION: There has recently been a growing acceptance that it is not only heterosexual functioning of surgically adjusted genitalia which should be considered when measuring the treatment outcome of persons with disorders of sex development (DSD) but also their overall sexual quality of life (SexQoL). AIM: A comprehensive cross-sectional investigation of SexQoL of persons with 46,XY DSD. METHODS: Forty-seven persons with 46,XY DSD (age 17-60 years) were examined by means of a questionnaire on various aspects of SexQoL. Scores were compared to a nonclinical convenience sample consisting of 145 women. Data were analyzed separately for diagnostic subgroups. Furthermore, persons whose external genitalia had been surgically corrected were compared with persons whose genitalia had been left unaltered. MAIN OUTCOME MEASURES: The Multidimensional Scale of Sexuality, the German Questionnaire on Feelings of Inadequacy in Social and Sexual Situations (FUSS), items on sexual dysfunctions according to DSM-IV-TR and self-constructed measures on sexual-activity history (e.g., previous sexual experience), sexual anxieties, and satisfaction with overall sex life and sexual function comprised the standardized assessment instruments. RESULTS: Compared with the nonclinical group, persons with 46,XY DSD had more often no partner (P = 0.056), felt more insecure in social (Mdn(DSD) = 17.0, Mdn(comparison) = 12.0, P = 0.001) and sexual situations (Mdn(DSD) = 17.0, Mdn(comparison) = 11.0, P = 0.006), had more sexual problems (Mdn(DSD) = 4.0, Mdn(comparison) = 3.0, P = 0.001), and were less satisfied with overall sex life (Mdn(DSD) = 3.0, Mdn(comparison) = 4.0, P = 0.000) and sexual function (Mdn(DSD) = 4.0, Mdn(comparison) = 4.0, P = 0.000). Results were inconsistent with regard to sexual-activity history (e.g., previous sexual experience). Participants who underwent genital surgery showed less dyspareunia (P = 0.027) but more fear of injuries during intercourse (P = 0.019) than those whose genitals were left unaltered. CONCLUSIONS: SexQoL of persons with 46,XY DSD may be impaired. Differences in SexQoL between diagnostic subgroups, effect of corrective genital surgery, and the influence of gender assignment will have to be further investigated in future studies.

Sexual quality of life of individuals with disorders of sex development and a 46,XY karyotype: a review of international research.

This article summarizes the current state of research on Sexual Quality of Life (SexQoL) of adults with 46,XY Disorders of Sex Development (DSD)/Intersexuality. An extensive literature search yield 21 studies published between 1974-2007, examining sexual aspects in individuals with 46,XY DSD. However, many of them lack methodological quality. The results are inconsistent but overall indicate that SexQoL of individuals with 46,XY DSD is impaired, particular with regard to sexual dysfunctions and sexual satisfaction. Future studies on SexQoL should focus more on qualitative aspects of sexuality and investigate medical and psychosocial risk factors such as sex-corrective surgery and parental bonding.

The Pediatric Penile Perception Score: an instrument for patient self-assessment and surgeon evaluation after hypospadias repair.

PURPOSE: The aim of this study was to develop and evaluate an instrument that allows assessment and comparison of penile perception of patients, parents and surgeons. MATERIALS AND METHODS: A total of 77 boys 6 to 17 years old who had undergone hypospadias repair were interviewed by a psychologist with a standardized questionnaire concerning penile self-perception with regard to meatus, glans, skin and general appearance. The Pediatric Penile Perception Score was derived from the sum of these 4 items. The results were compared with a control group of age matched boys following inguinal hernia repair. Parents were asked via questionnaire to report the penile appearance of their son using the Pediatric Penile Perception Score. A total of 56 patients accepted standardized photographic documentation, and their pictures were sent for evaluation with the Pediatric Penile Perception Score to 6 blinded urologists. RESULTS: The Pediatric Penile Perception Score allowed us to assess perception of the genitalia by patients, parents and urologists. Statistical analysis of the Pediatric Penile Perception Score assigned by the urologist revealed good interrater reliability (interclass correlation 0.75 to 0.88) and stability (r = 0.59 to 0.83). Intercorrelation of the items "meatus," "glans" and "skin" with "general appearance" was good among the boys, parents and urologists. Patients with hypospadias expressed high satisfaction with the penile appearance, which did not differ significantly from age matched controls. However, parents and urologists were less satisfied with the penile appearance than were the patients themselves. CONCLUSIONS: The Pediatric Penile Perception Score is a reliable instrument to assess penile self-perception in children after hypospadias repair, and for appraisal of the surgical result by parents and uninvolved urologists.

Health-related quality of life and psychological adjustment of children and adolescents with hypospadias.

OBJECTIVE: To assess health-related quality of life (HRQoL) and psychological adjustment of children and adolescents after hypospadias repair and to identify sociodemographic, medical, and psychosocial predictors of outcome. STUDY DESIGN: 77 boys (7-17 years old) who underwent surgery for hypospadias were investigated in a cross-sectional study. Child- and mother-rated HRQoL was evaluated by the TNO-AZL Child Quality of Life Questionnaire, psychological adjustment by the Child Behavior Checklist. Scores were compared with an age-matched control group consisting of 77 boys after hernia repair. RESULTS: Compared with the control subjects, self-reported HRQoL of patients with hypospadias was lower in most dimensions. In contrast, mother-reported HRQoL and psychological adjustment did not differ in the 2 groups. Higher age and "being less ashamed of penile appearance" predicted better self-reported HRQoL, whereas positive penile self-perception, the patient's experience of not having been teased about his penis, and more severe hypospadias contributed to better mother-reported HRQoL. Psychological adjustment was predicted by higher age, Swiss nationality, more severe hypospadias, and the patient's experience of not having been teased about his penis. CONCLUSIONS: In contrast to psychological adjustment, self-reported HRQoL of boys with hypospadias can be diminished. Psychosocial factors are more important predictors than medical variables.

Psychosexual development of children and adolescents with hypospadias.

INTRODUCTION: Hypospadias is the most common malformation of the penis. Despite the common assumption that hypospadias may affect children's psychosexual development, only a few studies report on the patients' psychosexual adjustment during childhood and adolescence. AIM: A comprehensive, cross-sectional investigation of the psychosexual development of boys operated on for hypospadias in comparison to a healthy control group. METHODS: Sixty-eight children and adolescents (7-17 years) operated on for hypospadias were examined by means of a standardized interview assessing penile self-perception, gender-role behavior, sexual experiences, and sexual attitude. Scores were compared to an age-matched control group consisting of 68 boys after hernia repair. Predictive values of medical variables as well as the patients' knowledge of hypospadias were assessed. MAIN OUTCOME MEASURES: The Pediatric Penile Perception Score, the Gender-Role Questionnaire by Ijntema and Cohen-Kettenis, and a self-developed questionnaire on first sexual experiences and sexual attitude comprised the standardized assessment instruments. RESULTS: Boys with hypospadias did not significantly differ from the control subjects with regard to penile self-perception, gender-role behavior, first sexual experiences, and sexual attitude. Younger age and the patient's knowledge of hypospadias predicted a more positive penile self-perception, while a more pronounced masculine gender-role behavior was best predicted by younger age at final surgery. CONCLUSIONS: Boys with corrected hypospadias may show a psychosexual development that is similar to healthy children. Puberty could be a critical time for the patients, however, during which they might require regular urological follow-ups and may benefit from age-appropriate information about their penile condition. Moreover, the later corrective surgery is completed, the more likely the patients may become insecure with regard to gender-role behavior.

Psychosocial adjustment, health-related quality of life, and psychosexual development of boys with hypospadias: a systematic review.

OBJECTIVE: A systematic review of studies on psychosocial adjustment, HRQoL (health-related quality of life), and psychosexual development of boys with hypospadias. METHODS: Research was conducted on several online bibliographic databases. Articles were selected on the basis of predefined criteria. Methodological quality was assessed by two independent reviewers who applied a standardized checklist. When possible, data analyses were performed by calculating effect sizes. RESULTS: Thirteen studies met the criteria for inclusion, whose methodological standard ranged from low to high quality. None of them has focused on HRQoL. Findings with regard to psychosocial and psychosexual adjustment were inconsistent, though they clearly showed that boys with hypospadias suffer from negative genital appraisal and sexual inhibitions. Overall, medical factors exerted a rather small influence. Psychosocial risk factors have hardly been examined so far. CONCLUSIONS: The identification of psychosocial risk factors in methodologically sound studies is necessary to guarantee a comprehensive treatment for boys with hypospadias.

Child Maltreatment and Migration: A Population-Based Study Among Immigrant and Native Adolescents in Switzerland.

BACKGROUND: Prevalence rates of child maltreatment (CM) can differ substantially between countries and ethnicities. Reasons, however, are complex and not sufficiently understood. METHOD: This epidemiological study examined prevalence and risk factors of various types of CM in a population-based representative sample of native and immigrant adolescents in Switzerland (N = 6,787). RESULTS: The prevalence of CM in general was lowest in the native group, higher in the Western immigrant group, and highest in the non-Western immigrant groups. An immigrant background was related to an overrepresentation of several risk factors for CM. Adjusted odds ratio of an immigrant background were still significant for physical and emotional abuse but not for neglect and sexual assault. CONCLUSIONS: Differences in the prevalence of CM across ethnographic origins are at least partially related to socioeconomic and ecologic risk factors. The distribution of risk factors may vary depending on the contexts of migration.

Child sexual abuse revisited: a population-based cross-sectional study among Swiss adolescents.

PURPOSE: Child sexual abuse (CSA) is one of the most serious public health problems among children and adolescents, owing to its widespread prevalence and serious health consequences. The present study aimed to assess the prevalence of, and characteristics and circumstances associated with, CSA. METHODS: An epidemiological survey was conducted on a nationally representative sample of 6,787 ninth-grade students (15.5 ± .66 years of age) in Switzerland. Self-reported computer-assisted questionnaires were administered between September 2009 and May 2010. Various forms of sexual victimization were assessed using the newly developed Child Sexual Abuse Questionnaire. RESULTS: Overall, 40.2% and 17.2% of girls and boys, respectively, reported having experienced at least one type of CSA event. Lifetime prevalence rates were 35.1% and 14.9%, respectively, for CSA without physical contact, 14.9% and 4.8% for CSA with physical contact without penetration, and 2.5% and .6% for CSA with penetration among girls and boys. The most frequently experienced event was sexual harassment via the Internet. More than half of female victims and more than 70% of male victims reported having been abused by juvenile perpetrators. Depending on the specific event, only 44.4%-58.4% of female victims and 5.8%-38% of male victims disclosed CSA, mostly to peers. CONCLUSIONS: The present study confirms the widespread prevalence of CSA. The high prevalence of CSA via the Internet and the frequent reports of juvenile perpetrators suggest emerging trends in CSA. Low disclosure rates, especially among male victims, and reluctance to disclose events to family members and officials may impede timely intervention.

Disclosure of child sexual abuse by adolescents: a qualitative in-depth study.

This qualitative study aimed to study the process of disclosure by examining adolescents from the general population who had experienced child sexual abuse (CSA). Twenty-six sexually victimized adolescents (23 girls, 3 boys; age: 15-18 years) participated in a qualitative face-to-face in-depth interview on different aspects of disclosure. A qualitative content analysis was conducted following Mayring and using the qualitative data analysis program Atlas.ti. In addition, quantitative correlation analyses were calculated to identify factors associated with disclosure. Less than one third of participants immediately disclosed CSA to another person. In most cases, recipients of both immediate and delayed disclosure were peers. More than one third of participants had never disclosed the abuse to a parent. Main motives for nondisclosure to parents were lack of trust or not wanting to burden the parents. Factors that correlated positively with disclosure were extrafamilial CSA, single CSA, age of victim at CSA, and having parents who were still living together. Negative associations with disclosure were found for feelings of guilt and shame and the perpetrator's age. Many adolescent survivors of CSA have serious concerns about disclosure to their parents and consider friends as more reliable confidants. These findings have two main implications for prevention: (1) In order to facilitate disclosure to parents, the strengthening of the child-parent relationship should be given specific attention in prevention programs, and (2) prevention programs should aim at teaching adolescents how they can help a victim if they become a recipient of disclosure.

Prevalence of child sexual abuse in Switzerland: a systematic review.

BACKGROUND: Although child sexual abuse (CSA) is considered to be a significant health risk, there is no systematic overview of studies that have investigated the prevalence of CSA in Switzerland. OBJECTIVES: To conduct a systematic review of studies on the prevalence of CSA in Switzerland. METHODS: A literature search was conducted using several online bibliographic databases. In addition, experts in the field in Switzerland were contacted to find studies that had not been published in academic journals. Studies were selected on the basis of predefined criteria. Because heterogeneity of studies did not allow meta-analytic calculations, data were suitably structured and summarised according to the most common types of CSA. RESULTS: Fifteen studies met inclusion criteria. Probably due to heterogeneity regarding definition and non-validated assessment of CSA, reported prevalence estimates varied greatly across studies. Prevalence rates were consistently higher for girls (up to 40%) than for boys (up to 11%). The most prevalent CSA with contact appears to be "perpetrator fondled victim", and the most common form of non-contact CSA was "exhibitionism". DISCUSSION: Due to inconsistent findings, conclusions that can be drawn are limited. However, results indicate that CSA prevalence rates in Switzerland are high and comparable to other European countries. In future, representative studies need to be conducted using a validated instrument based on internationally recognized definitions of CSA to obtain valid assessments of the prevalence of CSA in Switzerland.