Deepa Rao

The Stigma Scale for Chronic Illnesses 8-Item Version (SSCI-8): Development, Validation and Use Across Neurological Conditions

BackgroundAlthough the impact of stigma has been highlighted for epileptic populations, the experiences of people living with other neurological conditions have been less studied.PurposeIn order to promote research on stigma among people with neurological conditions, we sought to develop and psychometrically validate an eight-item questionnaire measuring internalised and enacted stigma experienced by people with epilepsy, multiple sclerosis (MS), Parkinson’s disease (PD), stroke and amyotrophic lateral sclerosis (ALS).MethodWe used item response theory methodologies to select items and field tested our items with 587 participants from eight academic medical centres across the USA.ResultsWe conducted exploratory and confirmatory factor analysis as well as examined the scale’s reliability and validity. In addition, we conducted an analysis of variance test to examine mean total score differences across the five neurological conditions. Data from people across conditions revealed that the shortened instrument conformed to an essentially unidimensional model of multifaceted stigma as a one-factor questionnaire with correlated residuals on a pair of items that distinctly measured internalised stigma.ConclusionPreliminary evidence suggests that the Stigma Scale for Chronic Illness 8-item version fits a unidimensional model, which assesses enacted and internalised stigma, and has adequate internal consistency/reliability and validity in relation to psychological distress and patient performance. Our results suggest fairly low stigma for neurological populations. In addition, our results suggest that stigma may be more severe for patients with ALS relative to those with MS and PD. In the future, the SSCI-8 scale could be used practically in clinic settings to examine stigma without the patient burden associated with lengthier scales.

Priority Symptoms in Advanced Breast Cancer: Development and Initial Validation of the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy-Breast Cancer Symptom Index (NFBSI-16)

OBJECTIVES By using methods consistent with recent regulatory guidance on patient-reported outcomes as endpoints in clinical trials, we created a new version of the Functional Assessment of Cancer Therapy-Breast Cancer Symptom Index (FBSI), with emphasis on patient input during the development process. METHODS We obtained input on the most important symptoms to monitor during treatment for stage III or IV breast cancer from 52 patients recruited from National Comprehensive Cancer Network institutions as well as support service organizations. Participating patients shared their top-priority symptoms/concerns through open-ended interviews and symptom checklists. To ensure adequate content coverage, we evaluated results alongside the original version of the FBSI, which was created on the basis of a survey of oncology clinicians at National Comprehensive Cancer Network institutions and items in the Functional Assessment of Chronic Illness Therapy measurement system. We also obtained input from 10 National Comprehensive Cancer Network oncologists regarding whether symptoms were primarily related to disease or treatment. RESULTS We selected breast cancer-related symptoms and concerns endorsed as high priority by both oncology patients and clinicians for inclusion in the new National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy-Breast Cancer Symptom Index-16 (NFBSI-16), which includes all eight items from the original FBSI and eight additional items from Functional Assessment of Chronic Illness Therapy measures. The NFBSI-16 is formatted by subscale: Disease-Related Symptom, Treatment Side-Effect, and General Function and Well-Being. Results provide preliminary support for NFBSI-16s internal consistency reliability (α = 0.87) and validity as evidenced by moderate-to-strong relationships with expected criteria. CONCLUSIONS Reflecting the priority symptoms of breast cancer patients and clinicians, the NFBSI-16 can be used to help evaluate the effectiveness of treatments for advanced breast cancer in clinical practice and research.

Developing a measure of health-related quality of life for women with cervical dysplasia resulting from human papillomavirus infection

Human papillomavirus (HPV) infection is the most common sexually transmitted infection in the USA, and has major physical and psychological consequences including fear, anxiety and stigma. To date, there is no measure of health-related quality of life specifically designed to assess symptoms and functioning for people with cervical dysplasia resulting from HPV infection. In the present study, we set out to develop a disease-specific measure of health-related quality of life among women with low-grade cervical dysplasia. We conducted literature reviews, open-ended interviews with patients, clinician surveys and cognitive interviews which guided item development. The result is a preliminary 36-item measure, the Functional Assessment of Chronic Illness Therapy – Cervical Dysplasia (FACIT-CD), which sets out to assess the physical and psychological health-related quality-of-life aspects of cervical dysplasia and will be validated in an upcoming study.

HIV-Related Stigma and HIV Disclosure Among Latinos on the US-Mexico Border

Latinos in the USA have lower levels of disclosure and higher levels of HIV-related stigma when compared to non-Hispanic whites. However, the nature of the stigma-disclosure relation has not been fully explored. We hypothesize that the path between HIV-related stigma and disclosure may be through a mediating attitude toward disclosure. As a secondary hypothesis, we predicted differences in the strength of association that cognitive attitudes and affective attitudes share with disclosure. We interviewed 241 HIV-positive individuals on HAART at an outpatient clinic in El Paso, Texas, a large city that borders Mexico. The significant association between HIV-related stigma and HIV disclosure was fully mediated by attitudes toward disclosure. In addition, the differences between correlations (i.e., both affective and cognitive attitudes with disclosure behaviors) were statistically significant for family members and casual sex partners (Steiger’s Z-test, Z = 5.15 and 2.54, ps < .01). Our model of disclosure-related attitudes suggests that as stigma becomes more salient, negative evaluations about disclosing may become more important during the disclosure decision-making process. Also, despite evidence from the literature that disclosure to certain targets (e.g., intimate partners) may occur for emotional reasons related to catharsis or emotional relief, our data suggest that cognitive appraisals (e.g., responsibility to educate) are more strongly related to disclosure rates to family members and casual sex partners.

Internalized Stigma Among African Americans Living with HIV: Preliminary Scale Development Based on Qualitative Data

In 2004, the Centers for Disease Control reported that AIDS was the leading cause of death for African American women between the ages of 25 and 34 and African American men between the ages of 35 and 44 in the United States. Researchers have explained the impact of HIV/AIDS in African American communities in terms of delays in accessing care and difficulties in adhering to medication regimens. Research findings suggest that culturally appropriate interventions developed to reduce HIV/AIDS stigma could help improve treatment adherence and, in turn, improve health outcomes for African Americans living with HIV/AIDS. In order to better understand the cultural experience of HIV stigma, we conducted 20 individual cognitive interviews with African American men and women living with HIV in Chicago who were seeking treatment from an HIV clinic based at a large academic medical center. We analyzed transcriptions of these interviews using a phenomenological and content analytic framework. The data helped us to adapt a stigma scale to help us better assess the severity of stigma as it is experienced, perceived, and internalized.

“The disease is mine, the body is mine, I decide”: Individual, interpersonal, and institutional barriers and facilitators among survivors of women's cancers in Andean countries

ABSTRACT Recent national cancer plans address high cancer mortality in Latin America, particularly in Andean countries. Little is known about which individual, interpersonal, and institutional facilitators and barriers persist, particularly from the perspective of cancer survivors. We conducted 15 semi-structured interviews with survivors of breast and cervical cancers during and after a Pan American Health Organization sponsored conference on womens cancers in Lima, Peru. We analyzed data using an inductive content analysis approach. Patients reported primarily psychosocial barriers and facilitators at individual, interpersonal, and institutional levels. Additionally, survivors provided recom-mendations to refine existing policy to improve the cancer care experience for patients.

Process and impact evaluation of a community gender equality intervention with young men in Rajasthan, India

Abstract This paper reports on the results of a process and impact evaluation to assess the effects of a project aiming to engage men in changing gender stereotypes and improving health outcomes for women in villages in Rajasthan, India. We conducted seven focus group discussions with participants in the programme and six in-depth interviews with intervention group leaders. We also conducted 137 pre- and 70 post-intervention surveys to assess participant and community knowledge, attitudes and behaviours surrounding gender, violence and sexuality. We used thematic analysis to identify process and impact themes, and hierarchical mixed linear regression for the primary outcome analysis of survey responses. Post-intervention, significant changes in knowledge and attitudes regarding gender, sexuality and violence were made on the individual level by participants, as well as in the community. Moderate behavioural changes were seen in individuals and in the community. Study findings offer a strong model for prevention programmes working with young men to create a community effect in encouraging gender equality in social norms.

HIV-Related Stigma and Viral Suppression Among African-American Women: Exploring the Mediating Roles of Depression and ART Nonadherence

We used baseline data from a sample of African-American women living with HIV who were recruited to participate in a stigma-reduction intervention in Chicago and Birmingham (2013–2015) to (1) evaluate the relationship between HIV-related stigma and viral suppression, and (2) assess the role of depression and nonadherence to antiretroviral therapy (ART) as mediators. Data from women were included in this secondary analysis if they were on ART, had viral load data collected within 8-weeks of study entry and had complete covariate data. We used logistic regression to estimate the total effect of HIV-related stigma (14-item Stigma Scale for Chronic Illness) on viral suppression (< 200 copies/mL), and serial mediation analysis to estimate indirect effects mediated by depressive symptoms (8-item Patient Health Questionnaire) and ART nonadherence (number of days with missed doses). Among 100 women who met study inclusion criteria, 95% reported some level of HIV-related stigma. In adjusted models, higher levels of HIV-related stigma were associated with lower odds of being virally suppressed (AOR = 0.93, 95% CI = 0.89–0.98). In mediation analysis, indirect effects through depression and ART nonadherence were not significant. Findings suggest that HIV-related stigma is common among African-American women living with HIV, and those who experience higher levels of stigma are less likely to be virally suppressed. However, the mechanisms remain unclear.

Risk and Protective Factors of Posttraumatic Stress Disorder (PTSD) Among African American Women Living with HIV

ABSTRACT We sought to examine risk and protective factors for Posttraumatic Stress Disorder (PTSD) among African American women living with HIV. This is a cross-sectional analysis of baseline data from a randomized trial of an HIV stigma reduction intervention. We examined data from two-hundred and thirty-nine African American women living with HIV. We examined whether age, marital status, level of education, internalized HIV-related stigma, and social support as potential protective and risk factors for PTSD symptoms using logistic regression. We analyzed bi-variate associations between each variable and PTSD symptoms, and constructed a multivariate logistic regression model adjusting for all variables. We found 67% reported clinically significant PTSD symptoms at baseline. Our results suggest that age, education, and internalized stigma were found to be associated with PTSD symptoms (p < 0.001), with older age and more education as protective factors and stigma as a risk factor for PTSD. Therefore, understanding this relationship may help improve assessment and treatment through evidence- based and trauma-informed strategies.

Enacted HIV-Related Stigma and Breast-Health Beliefs and Practices Among African American Women Living With HIV: The Mediating Roles of Internalized HIV-Related Stigma and Depressive Symptoms.

Reducing HIV-related stigma among African American women living with HIV is a priority to improve HIV-specific health outcomes, but may also impact other health beliefs and practices. Testing this hypothesis is important because African American women experience worse health outcomes relative to non-Latino Whites, including for breast cancer. During this study, we examined the relationship between enacted HIV-related stigma and breast-health beliefs and practices and the mediating effects of depressive symptoms and internalized HIV-related stigma. We used baseline data from a stigma-reduction intervention trial for adult African American women living with HIV in Chicago, Illinois and Birmingham, Alabama (N = 237). Data were collected using computer-assisted self-interviewing software. After adjusting for covariates, enacted HIV-related stigma was associated with greater perceived threat of breast cancer, specifically in terms of breast-cancer fear (p < .0001), but not regular breast health-care engagement (p = .17). Internalized HIV-related stigma and depressive symptoms were associated with enacted HIV-related stigma, perceived threat of breast cancer, and regular breast health-care engagement (all ps < .05). Internalized HIV-related stigma mediated the relationship between enacted HIV-related stigma and perceived threat of breast cancer (p = .001); depressive symptoms did not (p = .84). We provide evidence concerning broader influences of internalized HIV-related stigma for the health of African American women living with HIV. Future studies should include consideration of the impact of HIV stigma on other health beliefs and behaviors.