Five-year follow-up of the OptiTrain trial on concurrent resistance and high-intensity interval training during chemotherapy for patients with breast cancer.

The protocol predefined aim of this study is to assess sustained effects of the OptiTrain trial on several health outcomes, 5 years after the baseline assessment. The OptiTrain study was a prospective, randomised controlled trial with 240 patients with breast cancer undergoing adjuvant chemotherapy that compared the effects of 16 weeks of two exercise programs, RT-HIIT and AT-HIIT, with usual care (UC). After a 5-year follow-up, eligible participants were evaluated for the primary outcome of cancer-related fatigue (CRF) and secondary outcomes including quality of life, symptoms, muscle strength, cardiorespiratory fitness, body mass, physical activity, and sedentary behavior. Statistical analysis was conducted using linear mixed models adjusted for baseline values. Tumour profile and menopausal status were additionally adjusted for CRF. Mean differences (MD), 95% confidence intervals (CIs), and standardized effect sizes (ES) were reported. At the 5-year follow-up, there were no statistically significant differences in total CRF between the intervention groups and the UC group. RT-HIIT reported significantly reduced pain sensitivity at the gluteus MD = 79.00 (95% CI 10.17, 147.83, ES = 0.55) compared to UC. Clinically meaningful differences for an increase in cognitive CRF and cardiorespiratory fitness were observed for the AT-HIIT versus UC group, and for lower limb strength for the RT-HIIT versus UC group, albeit without statistical significance. Engaging in targeted exercise during adjuvant chemotherapy for breast cancer provides short-term benefits in reducing fatigue and maintaining physical function. However, our 5-year follow-up indicates that these effects are limited in the long term. This underscores the need to support breast cancer survivors maintain their PA levels throughout their survivorship journey.

Cultural Adaptation and Validation of the Barriers to HIV Testing Scale-Karolinska Version for Brazilian Men Who Have Sex With Men.

ABSTRACT: The aim of this study was to perform the cultural adaptation and validation of the Barriers to HIV testing scale-Karolinska version for Brazilian men who have sex with men. A methodological study was conducted for cultural adaptation and validation of the scale. Reliability analyses, exploratory factor analysis, confirmatory factor analysis, and convergent and discriminant validity tests were performed. Four factors were extracted: F1, personal consequences; F2, structural barriers; F3, confidentiality; F4, economic consequences and individual concerns. Good fit indexes were obtained: (χ 2 )/GL (2.71); goodness of fit index (0.94); root-mean-square error of approximation (0.052; 90% CI [0.045-0.059]); Tucker-Lewis index (0.94); normed fit index (0.93); IFI (0.95); comparative fit index (0.95). Convergent validity results were greater than 0.7 for the four factors. The adapted version of the scale showed satisfactory reliability and validity for assessing barriers to HIV testing among men who have sex with men.

Depression symptoms 6 years after stroke are associated with higher perceived impact of stroke, limitations in ADL and restricted participation.

Late post-stroke depression symptoms are understudied. This study aimed to investigate depression symptoms 6 years after stroke, and associations with perceived impact of stroke, activities of daily living (ADL), and participation in social and everyday activities. Data was collected in a 6-year follow-up in a longitudinal study of stroke. Assessments included Hospital Anxiety and Depression Scale (HADS) for depression symptoms, Stroke Impact Scale 3.0. for perceived impact of stroke, Barthel Index for ADL, Frenchay Activities Index for participation in social and everyday activities. The research questions were addressed by bivariate analyses (with HADS-D ≥ 4 as cut-off), and hierarchical multiple regression analyses using continuous HADS-D scores. Forty percent of the 105 participants (57% men, age 30-91) showed depression symptoms (HADS-D ≥ 4). Depression symptoms were associated with higher perceived impact of stroke, more dependence in ADL, and more restrictions in participation in social and everyday activities. Most of those with depression symptoms had low scores on HADS, indicating that even mild depression symptoms might be relevant to identify and target in treatment and rehabilitation of long-term consequences of stroke.

Efficacy of a Web-Based Psychoeducational Intervention for Young Adults With Fertility-Related Distress Following Cancer (Fex-Can): Randomized Controlled Trial.

BACKGROUND: Threatened fertility following cancer diagnosis in the reproductive age may severely impact emotional and psychosocial well-being in survivorship. Effective web-based interventions for fertility-related distress have been lacking. OBJECTIVE: This study aims to test whether the Fertility and Sexuality following Cancer (Fex-Can) intervention is superior to standard care in reducing fertility-related distress and related psychosocial outcomes in young adults with cancer. METHODS: This randomized controlled trial evaluated a 12-week, web-based, automated self-help intervention for fertility-related distress following cancer-Fex-Can Fertility. Individuals were identified via Swedish national quality registries, and those reporting fertility-related distress 1.5 years after diagnosis were invited. A total of 100 women and 24 men (aged 19-40 years) answered self-administered surveys at baseline (T0), directly after the intervention (T1), and 3 months later (T2). The main outcome was fertility-related distress, which was measured by using the 6-dimension Reproductive Concerns After Cancer (RCAC) scale. The secondary outcomes were health-related quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire), emotional distress (Hospital Anxiety and Depression Scale), fertility-related knowledge, and fertility self-efficacy. In addition, the intervention group (IG) reported self-perceived changes in problems related to fertility after cancer (T1). 2-tailed t tests and linear mixed models, including intention-to-treat and subgroup analyses, were performed to compare the effects of the intervention with those of standard care. RESULTS: Although 62% (31/50) of the participants in the IG stated that their concerns about fertility were fewer after the intervention, there were few statistically significant group differences in the main outcome (RCAC) at T1 and T2. Compared with controls, the IG rated lower distress concerning the dimension child's health at T2 (P=.003; effect size [ES]=0.64). This difference was maintained when adding group and time interactions (intention-to-treat: P=.003; ES=0.58). The IG also had better self-perceived cancer-related fertility knowledge at T1 (P=.05; ES=0.35) and T2 (P=.01; ES=0.42) than the control group. Subgroup analyses based on dose or adherence and baseline RCAC scores did not substantially alter these results. Overall, the use of the web-based program was low. CONCLUSIONS: The Fex-Can intervention had small to moderate positive effects on cancer-related fertility knowledge and distress related to child's health. The lack of group differences in other dimensions of fertility distress and related secondary outcomes contrasted with reports on self-perceived improvement after the intervention. The Fex-Can Fertility program may be a useful complement to routine psychosocial support in the clinical care of young women and men with cancer. TRIAL REGISTRATION: ISRCTN Registry 36621459; https://www.isrctn.com/ISRCTN36621459.

Towards a new understanding of HIV-related stigma in the era of efficient treatment- A qualitative reconceptualization of existing theory.

AIM: To further develop Earnshaw and Chaudoir's HIV stigma framework by describing the experiences of HIV-related stigma among people living with viral suppression in a context where HIV is well controlled and to investigate how these experiences correspond to the stigma mechanisms of the framework. DESIGN: Qualitative study using interviews and a framework approach to analysis. METHODS: People living with virally suppressed HIV in Sweden were recruited through an outpatient clinic and interviewed about their experiences of social aspects of living with HIV. The interviews were audio recorded, transcribed and analysed using a framework approach. RESULTS: Fifteen participants (eight women and seven men, aged 30-64 years) were interviewed from March to September 2017. They described stigma around HIV as a barrier in many situations. Anticipated and enacted stigma were found to be more complex than is described in the existing literature. Being labelled as a person with HIV was found to be an important and persistent part of the stigma experience. Disclosure was found to be context-related and a result of a process of negotiating and weighing the relevance of disclosing HIV, perceiving HIV as a private matter and feeling a responsibility to disclose one's HIV status to others. An important reason for nondisclosure was to avoid being labelled with HIV, which would then become their most defining feature. CONCLUSIONS: The HIV stigma framework could benefit from revision for people living with virally suppressed HIV. IMPLICATIONS: The present findings, which indicate the role of health professionals in relation to disclosure and labelling, may guide nurses and other healthcare personnel in providing counselling and support for people who live with virally suppressed HIV and experience stigma.

Cultural adaptation and psychometric evaluation of the Swedish version of the Reproductive Concerns After Cancer (RCAC) scale.

BACKGROUND: Reproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to describe the cultural adaptation of the RCAC scale into Swedish and evaluate its psychometric properties among young women who have undergone treatment for cancer. METHODS: The RCAC was forward translated from English into Swedish and assessed for cultural adaptation based on a two-panel approach followed by cognitive interviews with the target group. For the psychometric evaluation, a Swedish cohort of 181 female young adult breast cancer survivors completed a survey including the RCAC scale approximately 1.5 years post-diagnosis. Psychometric properties were examined by analyses of construct validity (confirmatory factor analysis and convergent validity), data quality (score distribution, floor and ceiling effects), reliability and known-groups validity. RESULTS: The confirmatory factor analysis yielded an acceptable fit (RMSEA 0.08, SRMR 0.09, CFI 0.92). Convergent validity was demonstrated by a negative correlation of moderate size (- 0.36) between the RCAC total score and the emotional function scale of the EORTC QLQ-C30. Reliability measured with Revelle Ω total was satisfactory (0.73-0.92) for five of the dimensions, and poor for the dimension Becoming pregnant (Revelle Ω total = 0.60); Cronbach's alpha showed a similar pattern. Known-groups validity was indicated by significant RCAC mean score differences (MD), reflecting more concerns among women with a certain (MD 4.56 [95% CI 3.13 to 5.99]) or uncertain (MD 3.41 [95% CI 1.68 to 5.14]) child wish compared to those with no wish for (additional) children. CONCLUSION: The translation and cultural adaptation of the Swedish RCAC has resulted in a scale demonstrating construct and known-groups validity, and satisfactory reliability for five of six dimensions. The dimension Becoming pregnant showed non-optimal internal consistency and should undergo further evaluation. The Swedish RCAC is recommended to be used in research settings for measurement of concerns related to fertility and parenthood in young women with cancer.

Role of rehabilitation in chronic stress-induced exhaustion disorder: A narrative review.

OBJECTIVE: An increase in numbers of cases of sick leave due to stress have been reported from several European countries during recent decades. Chronic stress-induced exhaustion disorder is associated with physiological and neurobiological perturbations that may contribute to cognitive problems and long-term exhaustion. Rehabilitation of patients with chronic stress-induced exhaustion disorder is therefore challenging. This narrative review summarizes the evidence regarding the effectiveness of different interventions for the rehabilitation of patients with chronic stress-induced exhaustion disorder. METHODS: Both structured and unstructured searches of research studies and reports were performed in order to find knowledge sources. The structured search had 2 predefined inclusion criteria: (i) chronic stress-induced exhaustion/clinical burnout/severe burnout/stress-induced exhaustion; and (ii) rehabil-itation with improvement of symptoms and/or return to work as outcomes. RESULTS: Cognitive behavioural interventions and multimodal interventions seem to reduce symptoms. Workplace interventions, either work-focused cognitive behavioural or workplace dialogue, seem to improve return to work. Sleep is important for both symptom improvement and return to work, and interventions for improving sleep might therefore be important. For improvement of cognitive function, which is a main complaint among patients with chronic stress-induced exhaustion disorder, aerobic and cognitive training may have some effect. CONCLUSION: In summary, the few studies of high-quality that examine interventions for rehabilitation of chronic stress-induced exhaustion disorder show only marginal effects. Thus, it is important to prevent the onset of chronic stress-induced exhaustion disorder.

Exposure to interpersonal violence and risk of post-traumatic stress disorder among women with borderline personality disorder.

BACKGROUND: This study aims to determine the validity of the Karolinska Interpersonal Violence Scale (KIVS), as a screening tool for PTSD, among women with borderline personality disorder (BPD) and severe suicidal behavior. METHOD: 106 women with BPD and at least two suicide attempts were assessed with the KIVS for exposure to interpersonal violence as a child and as an adult. The screening ability of the KIVS for the diagnosis of PTSD was analyzed using receiver operating characteristic curve analysis. RESULTS: PTSD diagnosis was valid for 61 (58%) women with BPD. The KIVS - exposure of lifetime interpersonal violence, displayed fair accuracy of predicting diagnosis of PTSD (area under the curve 0.79, confidence interval [0.71, 0.88]) and performed well (sensitivity 0.90 and specificity 0.62), with a cut-off score of 4 (range 0-10). Poly-traumatization was not significantly related to PTSD diagnosis as compared to single traumatization, whereas sexual victimization was significantly more prevalent in women with PTSD diagnosis, as compared to other types of traumatic events. CONCLUSION: A score of 4 or more on the KIVS - exposure to interpersonal lifetime violence presents well as a screening instrument for risk of PTSD, among women with BPD.

Differential item functioning for items in Berger's HIV Stigma Scale: an analysis of cohorts from the Indian, Swedish, and US contexts.

PURPOSE: To examine whether items in Berger's HIV Stigma Scale function differently with persons of different age, gender, and cultural backgrounds. METHODS: Secondary data from cohorts, collected in South India (n = 250), Sweden (n = 193), and the US (n = 603) were reanalyzed to evaluate DIF within, between, and across these cohorts. All participants had answered the revised version of the HIV stigma scale consisting of 32 items forming the subscales Personalized stigma, Disclosure concerns, Concerns about public attitudes, and Negative self-image. Differential Item Functioning (DIF) for these items was assessed using hybrid ordinal regression-IRT technique. When DIF was detected, the cumulative impact of DIF on individual subscale scores was evaluated. RESULTS: DIF was detected for 9 items within, between, or across cohorts, but the DIF was negligible in general. Detected DIF between the Swedish and Indian cohorts had a cumulative salient impact on individual scores for the subscale Disclosure Concerns; Disclosure concerns were overestimated in the Swedish cohort and both over- and underestimated in the Indian cohort. CONCLUSIONS: The items in the 32-item version of the HIV stigma scale did not seem to be particularly prone to present DIF. The DIF between the Indian and Swedish cohort for items in the subscale Disclosure Concerns could, however, result in both type I and type II errors if scores should be compared between the Indian and Swedish cohort.

The Relationship Between Stigma and Health-Related Quality of Life in People Living with HIV Who Have Full Access to Antiretroviral Treatment: An Assessment of Earnshaw and Chaudoir's HIV Stigma Framework Using Empirical Data.

The aim was to empirically test the tenets of Earnshaw and Chaudoir's HIV stigma framework and its potential covariates for persons living with HIV in Sweden. Partial least squares structural equation modelling was used on survey data from 173 persons living with HIV in Sweden. Experiencing stigma was reported to a higher extent by younger persons and by women who had migrated to Sweden. As expected, anticipated stigma was related to lower Physical functioning, and internalized stigma to lower Emotional wellbeing. In contrast to that hypothesized by the HIV stigma framework, enacted stigma was not related to Physical functioning and no relationships were found between HIV-related stigma and antiretroviral adherence. These results indicate that the HIV stigma framework may need to be revised for contexts where a very high proportion of persons living with HIV are diagnosed and under efficient treatment.

Feasibility of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress.

PURPOSE: The purpose of the study is to evaluate the feasibility of a self-help web-based intervention to alleviate sexual problems and fertility distress in adolescents and young adults with cancer. METHODS: Twenty-three persons with cancer (19 women and 4 men, age 18-43, 1-5 years post-diagnosis of lymphoma, breast, gynecologic, central nervous system, or testicular cancer) were recruited to test a 2-month web-based program targeting sexual problems or fertility distress. The programs were organized in modules with educational and behavior change content, including texts, illustrations, exercises, and video vignettes. The program also included a discussion forum and an "ask the expert" forum. In addition, the sexuality program offered two telephone consultations. Feasibility (regarding demand, acceptability, preliminary efficacy, and functionality) was evaluated with the website system data, telephone interviews, continuous online evaluations, and study-specific measures. RESULTS: Fifteen participants completed four modules or more. Most of the program features were used and well accepted by these "committed users." The web-based format enabled flexible use by participants with diverse needs. Preliminary efficacy was indicated by self-reported increased knowledge and skill in handling sexual problems and fertility distress. The website was easy to use and functioned well technically. CONCLUSIONS: The present study indicated that this web-based intervention was feasible for adolescents and young adults with cancer. The effectiveness of the intervention in decreasing sexual problems and fertility distress will be tested in a population-based randomized controlled trial for adolescents and young adults with cancer. TRIAL REGISTRATION: ISRCTN36621459.

Development of a 12-item short version of the HIV stigma scale.

BACKGROUND: Valid and reliable instruments for the measurement of enacted, anticipated and internalised stigma in people living with HIV are crucial for mapping trends in the prevalence of HIV-related stigma and tracking the effectiveness of stigma-reducing interventions. Although longer instruments exist, e.g., the commonly used 40-item HIV Stigma Scale by Berger et al., a shorter instrument would be preferable to facilitate the inclusion of HIV stigma in more and broader surveys. Therefore, the aim of this work was to develop a substantially shorter, but still valid, version of the HIV Stigma Scale. METHODS: Data from a psychometric evaluation of the Swedish 40-item HIV Stigma Scale were reanalysed to create a short version with 12 items (three from each of the four stigma subscales: personalised stigma, disclosure concerns, concerns with public attitudes and negative self-image). The short version of the HIV stigma scale was then psychometrically tested using data from a national survey investigating stigma and quality of life among people living with HIV in Sweden (n = 880, mean age 47.9 years, 26% female). RESULTS: The hypothesized factor structure of the proposed short version was replicated in exploratory factor analysis without cross loadings and confirmatory factor analysis supported construct validity with high standardised effects (>0.7) of items on the intended scales. The χ2 test was statistically significant (χ2 = 154.2, df = 48, p < 0.001), but alternate fit measures indicated acceptable fit (comparative fit index: 0.963, Tucker-Lewis index: 0.950 and root mean square error of approximation: 0.071). Corrected item-total correlation coefficients were >0.4 for all items, with a variation indicating that the broadness of the concept of stigma had been captured. All but two aspects of HIV-related stigma that the instrument is intended to cover were captured by the selected items in the short version. The aspects that did not lose any items were judged to have acceptable psychometric properties. The short version of the instrument showed higher floor and ceiling effects than the full-length scale, indicating a loss of sensitivity in the short version. Cronbach's α for the subscales were all >0.7. CONCLUSIONS: Although being less sensitive in measurement, the proposed 12-item short version of the HIV Stigma Scale has comparable psychometric properties to the full-length scale and may be used when a shorter instrument is needed.

Development of a Self-Help Web-Based Intervention Targeting Young Cancer Patients With Sexual Problems and Fertility Distress in Collaboration With Patient Research Partners.

BACKGROUND: The Internet should be suitable for delivery of interventions targeting young cancer patients. Young people are familiar with the technologies, and this patient group is small and geographically dispersed. Still, only few psycho-educational Web-based interventions are designed for this group. Young cancer patients consider reproductive health, including sexuality, an area of great importance and approximately 50% report sexual problems and fertility-related concerns following cancer treatment. Therefore, we set out to develop a self-help Web-based intervention, Fex-Can, to alleviate such problems. To improve its quality, we decided to involve patients and significant others as research partners. The first 18 months of our collaboration are described in this paper. The intervention will subsequently be tested in a feasibility study followed by a randomized controlled trial. OBJECTIVE: The study aims to describe the development of a Web-based intervention in long-term collaboration with patient research partners (PRPs). METHODS: Ten former cancer patients and two significant others participated in building the Web-based intervention, using a participatory design. The development process is described according to the design step in the holistic framework presented by van Gemert-Pijnen et al and evaluates the PRPs' impact on the content, system, and service quality of the planned intervention. RESULTS: The collaboration between the research group and the PRPs mainly took place in the form of 1-day meetings to develop the key components of the intervention: educational and behavior change content, multimedia (pictures, video vignettes, and audios), interactive online activities (eg, self-monitoring), and partial feedback support (discussion forum, tailored feedback from experts). The PRPs influenced the intervention's content quality in several ways. By repeated feedback on prototypes, the information became more comprehensive, relevant, and understandable. The PRPs gave suggestions concerning the number of exercises and pointed out texts and pictures needing revision (eg, experienced as normative or stereotypical) to increase the persuasiveness of the program. The system quality was improved by PRPs' feedback on design, technical malfunctions, and navigation on the website. Based on feedback about availability of professional support (technical problems and program content), the organization for support was clarified, which increased service quality. The PRPs also influenced the research project on an overall level by suggesting modifications of inclusion criteria for the RCT and by questioning the implementation plan. CONCLUSIONS: With suggestions and continuous feedback from PRPs, it was possible to develop a Web-based intervention with persuasive design, believed to be relevant and attractive for young persons with cancer who have sexual problems or fertility distress. In the next step, the intervention will be tested in a feasibility study, followed by an RCT to test the intervention's effectiveness in reducing sexual problems and fertility distress. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN): 36621459; http://www.isrctn.com/ISRCTN36621459 (Archived by WebCite at http://www.webcitation.org/6gFX40F6T).

HIV-related stigma and health-related quality of life among children living with HIV in Sweden.

The relationship between HIV-related stigma and health-related quality of life (HRQoL) among children living with HIV infection is unknown. The objectives of this study were to describe HIV-related stigma and HRQoL among children with perinatal HIV living in Sweden, and to investigate the relationship between these two factors in the same infection group. In a cross-sectional nationwide survey, HIV-related stigma was measured with the 8-item HIV Stigma Scale for Children. HRQoL was measured with the 37-item DISABKIDS Chronic Generic Module. Structural equation modeling was used to explore the relationship between HIV-related stigma and HRQoL. Fifty-eight children participated, age 9-18 years (mean = 13.9). The HIV stigma general scale showed a mean score of 17.6 (SD = 5.0; possible range 8-32). DISABKIDS Chronic Generic Module general scale showed a mean score of 80.7 (SD = 14.1; possible range 0-100). HIV-related stigma was negatively associated with HRQoL (standardized ß = -0.790, p = .017). The results indicate that children's concerns related to disclosure of their HIV infection seem to be common (i.e. 75% agreed) which, together with the negative association between ratings of HIV-relatively stigma and HRQoL, might indicate that disclosure concerns would be a relevant target for interventions to decrease HIV-related stigma and increase HRQoL.

Development and psychometric testing of a barriers to HIV testing scale among individuals with HIV infection in Sweden; The Barriers to HIV testing scale-Karolinska version.

BACKGROUND: Barriers to HIV testing experienced by individuals at risk for HIV can result in treatment delay and further transmission of the disease. Instruments to systematically measure barriers are scarce, but could contribute to improved strategies for HIV testing. Aims of this study were to develop and test a barriers to HIV testing scale in a Swedish context. METHODS: An 18-item scale was developed, based on an existing scale with addition of six new items related to fear of the disease or negative consequences of being diagnosed as HIV-infected. Items were phrased as statements about potential barriers with a three-point response format representing not important, somewhat important, and very important. The scale was evaluated regarding missing values, floor and ceiling effects, exploratory factor analysis, and internal consistencies. RESULTS: The questionnaire was completed by 292 adults recently diagnosed with HIV infection, of whom 7 were excluded (≥9 items missing) and 285 were included (≥12 items completed) in the analyses. The participants were 18-70 years old (mean 40.5, SD 11.5), 39 % were females and 77 % born outside Sweden. Routes of transmission were heterosexual transmission 63 %, male to male sex 20 %, intravenous drug use 5 %, blood product/transfusion 2 %, and unknown 9 %. All scale items had <3 % missing values. The data was feasible for factor analysis (KMO = 0.92) and a four-factor solution was chosen, based on level of explained common variance (58.64 %) and interpretability of factor structure. The factors were interpreted as; personal consequences, structural barriers, social and economic security, and confidentiality. Ratings on the minimum level (suggested barrier not important) were common, resulting in substantial floor effects on the scales. The scales were internally consistent (Cronbach's α 0.78-0.91). CONCLUSIONS: This study gives preliminary evidence of the scale being feasible, reliable and valid to identify different types of barriers to HIV testing.

Legal guardians understand how children with the human immunodeficiency virus perceive quality of life and stigma.

AIM: This aim of this study was to describe how legal guardians assessed health-related quality of life and HIV-related stigma in children with the human immunodeficiency virus (HIV) compared to the children's own ratings. METHODS: A cross-sectional nationwide study was performed to compare how 37 children aged from eight to 16 years of age with perinatal HIV, and their legal guardians, assessed the children's health-related quality of life and HIV-related stigma. Data were collected using the 37-item DISABKIDS Chronic Generic Module and a short eight-item version of the HIV stigma scale. RESULTS: Intraclass correlations indicated concordance between the legal guardians' ratings and the children's own ratings of the child's health-related quality of life and HIV-related stigma. There were no statistically significant differences between the ratings of the two groups and gender did not have any impact on the results. Both groups indicated that the children had concerns about being open about their HIV status. CONCLUSION: The results of this study indicated that legal guardians understood how their children perceived their health-related quality of life and HIV-related stigma. The results also indicated the need for interventions to support both the children and legal guardians when it came to disclosing the child's HIV status.

Psychometric evaluation of the HIV stigma scale in a Swedish context.

BACKGROUND: HIV-related stigma has negative consequences for infected people's lives and is a barrier to HIV prevention. Therefore valid and reliable instruments to measure stigma are needed to enable mapping of HIV stigma. This study aimed to evaluate the psychometric properties of the HIV stigma scale in a Swedish context with regard to construct validity, data quality, and reliability. METHODS: The HIV stigma scale, developed by Berger, Ferrans, and Lashley (2001), was distributed to a cross-sectional sample of people living with HIV in Sweden (n = 194). The psychometric evaluation included exploratory factor analysis together with an analysis of the distribution of scores, convergent validity by correlations between the HIV stigma scale and measures of emotional well-being, and an analysis of missing items and floor and ceiling effects. Reliability was assessed using Cronbach's α. RESULTS: The exploratory factor analysis suggested a four-factor solution, similar to the original scale, with the dimensions personalised stigma, disclosure concerns, negative self-image, and concerns with public attitudes. One item had unacceptably low loadings and was excluded. Correlations between stigma dimensions and emotional well-being were all in the expected direction and ranged between -0.494 and -0.210. The instrument generated data of acceptable quality except for participants who had not disclosed their HIV status to anybody. In line with the original scale, all subscales demonstrated acceptable internal consistency with Cronbach's α 0.87-0.96. CONCLUSION: A 39-item version of the HIV stigma scale used in a Swedish context showed satisfactory construct validity and reliability. Response alternatives are suggested to be slightly revised for items assuming the disclosure of diagnosis to another person. We recommend that people that have not disclosed should skip all questions belonging to the dimension personalised stigma. Our analysis confirmed construct validity of the instrument even without this dimension.

Psychometric properties of a short version of the HIV stigma scale, adapted for children with HIV infection.

BACKGROUND: HIV is a stigmatizing medical condition. The concept of HIV stigma is multifaceted, with personalized stigma (perceived stigmatizing consequences of others knowing of their HIV status), disclosure concerns, negative self-image, and concerns with public attitudes described as core aspects of stigma for individuals with HIV infection. There is limited research on HIV stigma in children. The aim of this study was to test a short version of the 40-item HIV Stigma Scale (HSS-40), adapted for 8-18 years old children with HIV infection living in Sweden. METHODS: A Swedish version of the HSS-40 was adapted for children by an expert panel and evaluated by think aloud interviews. A preliminary short version with twelve items covering the four dimensions of stigma in the HSS-40 was tested. The psychometric evaluation included inspection of missing values, principal component analysis (PCA), internal consistency, and correlations with measures of health-related quality of life (HRQoL). RESULTS: Fifty-eight children, representing 71% of all children with HIV infection in Sweden meeting the inclusion criteria, completed the 12-item questionnaire. Four items concerning participants' experiences of others' reactions to their HIV had unacceptable rates of missing values and were therefore excluded. The remaining items constituted an 8-item scale, the HIV Stigma Scale for Children (HSSC-8), measuring HIV-related disclosure concerns, negative self-image, and concerns with public attitudes. Evidence for internal validity was supported by a PCA, suggesting a three factor solution with all items loading on the same subscales as in the original HSS-40. The scale demonstrated acceptable internal consistency, with exception for the disclosure concerns subscale. Evidence for external validity was supported in correlational analyses with measures of HRQoL, where higher levels of stigma correlated with poorer HRQoL. CONCLUSION: The results suggest feasibility, reliability, as well as internal and external validity of the HSSC-8, an HIV stigma scale for children with HIV infection, measuring disclosure concerns, negative self-image, and concerns with public attitudes. The present study shows that different aspects of HIV stigma can be assessed among children with HIV in the age group 8-18.

Shame-proneness in attempted suicide patients.

BACKGROUND: It has been suggested that shame may be an important feature in suicidal behaviors. The disposition to react with shame, "shame-proneness", has previously not been investigated in groups of attempted suicide patients. We examined shame-proneness in two groups of attempted suicide patients, one group of non-suicidal patients and one group of healthy controls. We hypothesized that the attempted suicide patients would be more shame-prone than non-suicidal patients and healthy controls. METHODS: The Test of Self-Conscious Affect (TOSCA), which is the most used measure of shame-proneness, was completed by attempted suicide patients (n = 175: 105 women and 3 men with borderline personality disorder [BPD], 45 women and 22 men without BPD), non-suicidal psychiatric patients (n = 162), and healthy controls (n = 161). The participants were convenience samples, with patients from three clinical research projects and healthy controls from a fourth research project. The relationship between shame-proneness and attempted suicide was studied with group comparisons and multiple regressions. Men and women were analyzed separately. RESULTS: Women were generally more shame-prone than men of the same participant group. Female suicide attempters with BPD were significantly more shame-prone than both female suicide attempters without BPD and female non-suicidal patients and controls. Male suicide attempters without BPD were significantly less shame-prone than non-suicidal male patients. In multiple regressions, shame-proneness was predicted by level of depression and BPD (but not by attempted suicide) in female patients, and level of depression and non-suicidality in male patients. CONCLUSIONS: Contrary to our hypothesis and related previous research, there was no general relationship between shame-proneness and attempted suicide. Shame-proneness was differentially related to attempted suicide in different groups of suicide attempters, with significantly high shame-proneness among female suicide attempters with BPD and a negative relationship between shame-proneness and attempted suicide among male patients. More research on state and trait shame in different groups of suicidal individuals seems clinically relevant.