Experiences Of Stigma Research Articles

Long COVID and Health Inequalities: What's Next for Research and Policy Advocacy?

Organised by the 'Qualitative Long Covid Network', a workshop for qualitative Long COVID (LC) researchers, LC charity representatives and people with LC took place in June 2023, where research on the intersectional inequalities affecting LC prevalence, recognition and care was shared and discussed. Five key themes were drawn up from presentations, discussions and reflections during the workshop, which are presented in this study. The following five themes are discussed: the unfairness of LC, difficulties in accessing care, mistrust of the healthcare system, a lack of understanding of LC and experiences of stigma and discrimination. Factors that widen or narrow inequalities related to LC were identified. A call to action is proposed to investigate and address inequalities through a robust LC research agenda that speaks with conviction to policy and decision-makers. We argue that there needs to be a strong investment in research and evidence-based policy and practice to mitigate the worst effects of the condition and address the inequalities in experience, treatment and support, which are experienced more often and more acutely by some of society's most vulnerable and disadvantaged individuals. Projects included in this article had PPI ongoing activity to inform their research. A member of the CONVALESCENCE PPI group presented at the QLC Network 'Long Covid and Health Inequalities' workshop, as did members of Long COVID Kids, Long COVID Support and Long COVID SOS charities. They were all invited to be co-authors of this article.

A Moderated Mediation Analysis of HIV and Intersectional Stigmas and Antiretroviral Adherence in People Living with HIV in the Dominican Republic.

Experiencing HIV and intersectional stigmas in healthcare settings may affect antiretroviral treatment (ART) adherence among people with HIV (PWH), given their need for frequent interactions with clinical settings and healthcare providers. Considering the importance of reducing stigmas to promote well-being and the need to elucidate how stigma influences health across various settings, we examined how experienced HIV stigma in Dominican Republic healthcare settings impacts ART adherence through internalized HIV stigma and whether race or sexual orientation stigma moderates this relationship. Participants were 471 PWH (aged 17-71) who were recruited from two HIV clinics in the Dominican Republic in 2021-2022. Results revealed a significant mediation effect (B=-0.10, SE = 0.05, CI [-0.234, - 0.014]) after adjusting for effect of age and time since HIV diagnosis, suggesting that experienced HIV stigma in healthcare settings was associated with more internalized HIV stigma (B = 0.39, SE = 0.11, p = .001), subsequently linked to lower ART adherence (B=-0.26, SE = 0.11, p = .016). The indirect effect was significant at low levels of race stigma (B=-0.16, SE = 0.09, CI [-0.369, - 0.001]) but not at high levels of race stigma (B=-0.06, SE = 0.05, CI [-0.175, 0.038]). This indirect effect was also significant at low levels of sexual orientation stigma (B=-0.19, SE = 0.10, CI [-0.401, - 0.023]) but not at high levels of sexual orientation stigma (B=-0.04, SE = 0.06, CI [-0.160, 0.074]). These findings suggest that addressing experienced HIV stigma in Dominican Republic healthcare settings, along with various dimensions of HIV-related stigma (e.g., internalized stigma) and intersecting stigmas (e.g., race, sexual orientation), is vital for improving health outcomes, such as optimal ART adherence.

Persistent pain, long-term opioids, and restoring trust in the patient-clinician relationship

The erosion of trust in the patient-clinician relationship is an underappreciated, and vital, component of the prescription opioid crisis. Drawing from lived experience of patients and clinicians, and a narrative evidence review, this report discusses how opioid use for persistent pain can impact the patient-clinician relationship from the vantage points of the patient and the family physician. For patients, the stress of dealing with persistent pain, misalignment with clinicians regarding goals of care, experiences of disrespect and stigma, fear of abrupt tapers, and frustration with a fragmented health system, all combine to breed a lack of trust. Clinicians, for their part, experience challenges due to inadequate resources for pain management and opioid safety, pressure to deprescribe opioids rapidly, inconsistent prescribing practices of colleagues, ‘policing’ opioid prescriptions when concern arises for opioid use disorder and adversarial relationships with frustrated patients wary of clinician intentions. As a result, many clinicians struggle to maintain a therapeutic relationship with patients in great need of empathy and healing. To support implementation of evidence-based guidelines and achieve public health goals of safer prescribing and reducing harm from prescription opioids, we recommend steps health systems and clinicians can take to rebuild trust in the patient-clinician relationship, enable patient-centered pain care, and embed patient perspectives into opioid safety processes. PerspectiveErosion of patient-clinician trust is a barrier to implementing evidence-based guidelines that aim to improve opioid safety. This paper explores lived patient and clinician experiences and recommends steps for health systems and clinicians to rebuild this trust as a strategy to actualize the benefits of adherence to these guidelines.

Multilevel Factors Impacting Substance Use Treatment Access, Engagement, and Racial Equity Among Opioid Overdose Survivors in Boston, MA.

There are well-documented racial/ethnic inequities in drug-related overdoses and access to evidence-based opioid use services nationally and in Boston, MA. To qualitatively explore the drivers of racial/ethnic inequities in access to opioid use disorder treatment and services in Boston. Semi-structured qualitative interviews. Using purposive sampling, researchers recruited 59 opioid overdose survivors in Boston who self-identified as Black, Hispanic or Latino/a/x, and/or White. Interviewers administered a socio-demographic and drug use survey, and used a semi-structured interview guide to explore experiences with and perspectives on substance use treatment and services. Participants' racial/ethnic identities were distributed across three subgroups: non-Hispanic Black (n = 18; 31%), non-Hispanic White (n = 18; 31%), and Latino/a/x (n = 23; 39%). Qualitative analysis identified multiple themes that were organized into four social-ecological levels after analysis. At the individual level, some participants emphasized the importance of personal responsibility and individual motivation in determining access to services. Participants expressed a range of perspectives about using medication for opioid use disorder treatment; Black and Latino/a/x participants were more likely than White participants to have critical perspectives. At the interpersonal level, experiences of bias, stigma, and racism from staff in healthcare and treatment settings were common. At the program/process level, participants described challenges connecting to services following overdose and barriers within specific programs, with Black and Latino/a/x participants experiencing particular gaps. At the systems level, the limited availability of housing, employment, and mental health care negatively impacted treatment access and engagement. A racism lens was used during data interpretation to apply the themes at a broader population level. Through this lens, the identified barriers can be understood to have a disproportionate impact on people of color. Findings call for programmatic and policy solutions that address racism, break down stigma, and ensure equitable access to evidence-based services and social supports.

Mapping local evidence on early recognition and management of people with potential cancer symptoms: a narrative review

Aim Early cancer detection has potential to improve outcomes. However, many patients in South Africa present when the disease is at an advanced stage. The World Health Organization recommends two approaches to early cancer detection: screening asymptomatic individuals, and early recognition and management of symptomatic individuals. This paper focuses on the latter. For people with potential cancer symptoms, the journey to diagnosis is complex and influenced by multiple factors. Most symptomatic people will self-present to primary health care clinics, where primary health care providers are pivotal in triage. Methods This article presents local insights into cancer awareness measurement tools: community-level cancer symptom awareness, lay beliefs, and symptom appraisal; factors influencing the journey from symptom discovery to diagnosis; primary health care provider challenges in assessing symptomatic individuals, and interventions to support symptom assessment and help-seeking. It draws on findings from the African Women Awareness of CANcer (AWACAN) project and a narrative review of relevant published articles on journeys to cancer diagnosis in SA (2013-2023). Findings Very few cancer awareness measurement tools have been locally validated, hampering comparison and limiting opportunities for intervention development and evaluation. The AWACAN study developed and validated a local cancer awareness measurement tool for breast and cervical cancer. Studies show that most people in SA need information on cancer risk, symptoms, and pathways to care. Barriers to accessing health care include financial, infrastructural, safety, stigma, and previous health facility experiences. Primary health care providers require support for symptom assessment and referral systems. There is limited local work on developing and evaluating interventions to improve timely cancer diagnosis. Conclusions This paper underscores the importance of prioritising early recognition and management of people with symptomatic cancer as part of a comprehensive cancer control plan, providing insights for improving the journey to diagnosis.

Exploring Effects of Race and Differential Item Functioning on PrEP Stigma Experiences: Implications for Latent Stigma Measurement in Racially and Sexually Diverse Populations.

PrEP stigma measurement remains a challenge to the validity of studies and interventions addressing HIV prevention. It may lead to inaccurate assessment of the relationship between PrEP stigma and health outcomes such as PrEP persistence and care retention in groups experiencing HIV-related inequities. The present research explored the psychometric properties of a novel IV pre-exposure prophylaxis (PrEP) stigma scalein a cohort of racially diverse men who have sex with men (MSM). Using item response theory, analyses explored presence of differential item functioning (DIF)among Black and White respondents. Participants completed baseline surveys measuring psychosocial factors, sociodemographic factors, and PrEP stigma items. The primary analysis used a machine learning approach to assess (a) the presence of DIF; and (b) compare latent stigma between Black and White respondents, after correcting for any DIF. The model identified four out of 13 scale items as having a high probability of DIFfor Black respondents, which is relatively good given that the original PrEP stigma scale was neitherdesigned nor tested for validation comparing Black and White respondents. The DIF-adjusted latent PrEP stigma measure reveals statistically and substantially significantly higher levels of stigma for Black compared to White respondents (Diff.: 1.05 +/- 0.19). While most items performed well, findings demonstrate the importance of assessing measurement error in populations where stigma is rampant and being studied or intervened upon (and in this case, where multilevel and intersectional stigma may be present).

“Grasping on a spider web of hope”: Psychological challenges and impact of waiting to access UK gender dysphoria Clinics on young adults

Background Young transgender adults report higher levels of mental health difficulties compared to the general population. These difficulties reportedly improve following gender-affirming care and transition. However, gender-dysphoric people wait up to 5+ years in the UK to access gender-affirming treatment. Aims The study aimed to qualitatively explore the psychological challenges and impact of waiting to access UK Gender Dysphoria Clinics (GDCs) for young trans adults. Methods Recruitment via two GDCs resulted in a sample of 10 participants (aged 17–26) who had been waiting at least 12 months for assessment. Qualitative semi-structured interviews were conducted online or by phone with four men, four women, and two gender nonconforming people. Data were analyzed through Interpretive Phenomenological Analysis (IPA). Results Challenges and impact of waiting were represented within eight themes. Five psychosocial challenges included "Grasping on a spider web of hope that’s about to snap,” “People are uneducated and they don’t understand,” “Society or whatever made me second guess myself,” “I’m too autistic for that shit’, and “It sounded like the phone was just being left all day every day.” Mental health impacts of waiting were captured in the themes “(Gender) Dysphoria attacks” and “If it doesn’t go well by 30, I’m gonna kill myself.” A final theme, “I’m going to just go on with me life,” focused on healthy and less-adaptive coping strategies. Conclusion Waiting to access GDCs is a fragile and vulnerable time; experiences of discrimination, stigma, transphobia, and uncertainty during the waiting period appear to increase feelings of hopelessness and diminish mental health. Focusing on social transitioning was reported by most participants as a coping strategy for waiting. Findings highlight the importance of reducing waiting times for GDCs and offering psychosocial support during the wait.

Associations Between Perceived Social Status, Discrimination, With Subjective Sleep Quality Among Migrant Care Workers During COVID-19 Pandemic.

This study examines the relationship between perceived social status, COVID-19-related discrimination, and sleep quality among 158 migrant care workers in Taiwan. Data were collected via computer-assisted interviews, assessing perceived social status with the MacArthur scale and sleep quality using the Pittsburgh Sleep Quality Index. The results revealed that higher perceived social status in reference to the destination country (B = 0.31; 95% confidence interval [CI] = [0.08, 0.53]; P = .008) and experience of media stigmatization (B = 0.52; 95% CI = [0.04, 0.99]; P = .03) were associated with higher global Pittsburgh Sleep Quality Index (PSQI) scores, whereas perceived social status in reference to the home country and others forms of pandemic-related discrimination were not associated with PSQI scores. The study concludes that social comparison and stigmatization linked to sleep health of migrant care workers. Understanding these factors can inform the development of targeted interventions to address inequalities faced by migrants.

Evaluation of Nurses’ Attitudes toward Human Immuno Deficiency

Background: HIV nursing protocols, including rapid HIV testing, face weaknesses such as improper data collection and ambiguity. To reduce stigmatization, interventions should promote the adoption of nursing practices that influence stigmatization experiences. The International Nursing Network for HIV Research recommends collaboration, global partnerships, and scientific work to increase nurses' impact in HIV research. Nurses' experiences with HIV/AIDS patients can impact their health and the spread of the virus. Barriers to HIV treatment include lack of knowledge, demotivation, resistance, and lack of adherence to treatment guidelines. Nurse involvement in HIV prevention is crucial for improving patient outcomes. Objective(s): This study aims to evaluate nurses' attitudes toward human Immuno deficiency. Methodology: A quasi-experimental design was conducted in 7 January 2024 to 7 May 2024, The study at Al Musayyib General Hospital in Babylon, Iraq, involved 100 nursing professionals in a health education program. The program aimed to improve nurses' understanding and attitudes towards HIV/AIDS. The program's effectiveness was assessed through questionnaires. Results: The study found that nurses aged 23-less than 30 years, predominantly female, had moderate attitudes towards the human immunodeficiency virus. However, there was no significant relationship between nurses' attitudes and sociodemographic variables or professional variables such as education, years of experience, knowledge development, or participation in training courses. The majority of nurses were urban residents. Conclusion: Healthcare professionals should therefore follow national infection prevention guidelines when working in hospitals. To increase nurses' understanding and proficiency in this area, policy designers ought to train them in infection prevention. Further research should include a qualitative study in order to obtain more detailed information. Recommendation: Institutions may enhance their knowledge of HIV care practices by conducting frequent training sessions for nursing staff, personalizing instructional materials, gauging and reviewing attitude levels, encouraging peer learning, and expanding the scope of research. In order to provide effective HIV care, this will assist nurses in expanding their knowledge and adjusting their attitude.

Evaluation of Nurses’ Attitudes toward Human Immuno Deficiency

Background: HIV nursing protocols, including rapid HIV testing, face weaknesses such as improper data collection and ambiguity. To reduce stigmatization, interventions should promote the adoption of nursing practices that influence stigmatization experiences. The International Nursing Network for HIV Research recommends collaboration, global partnerships, and scientific work to increase nurses' impact in HIV research. Nurses' experiences with HIV/AIDS patients can impact their health and the spread of the virus. Barriers to HIV treatment include lack of knowledge, demotivation, resistance, and lack of adherence to treatment guidelines. Nurse involvement in HIV prevention is crucial for improving patient outcomes. Objective(s): This study aims to evaluate nurses' attitudes toward human Immuno deficiency. Methodology: A quasi-experimental design was conducted in 7 January 2024 to 7 May 2024, The study at Al Musayyib General Hospital in Babylon, Iraq, involved 100 nursing professionals in a health education program. The program aimed to improve nurses' understanding and attitudes towards HIV/AIDS. The program's effectiveness was assessed through questionnaires. Results: The study found that nurses aged 23-less than 30 years, predominantly female, had moderate attitudes towards the human immunodeficiency virus. However, there was no significant relationship between nurses' attitudes and sociodemographic variables or professional variables such as education, years of experience, knowledge development, or participation in training courses. The majority of nurses were urban residents. Conclusion: Healthcare professionals should therefore follow national infection prevention guidelines when working in hospitals. To increase nurses' understanding and proficiency in this area, policy designers ought to train them in infection prevention. Further research should include a qualitative study in order to obtain more detailed information. Recommendation: Institutions may enhance their knowledge of HIV care practices by conducting frequent training sessions for nursing staff, personalizing instructional materials, gauging and reviewing attitude levels, encouraging peer learning, and expanding the scope of research. In order to provide effective HIV care, this will assist nurses in expanding their knowledge and adjusting their attitude.

A hopeful future: a qualitative investigation of positive psychological functioning in young mothers

ABSTRACT Aims/Background Young mothers have reported facing specific challenges such as stigmatisation and social isolation, which may be exaggerated by the increasing maternal age in industrialised countries. Despite these challenges, some young mothers have been shown to exhibit resilience and confidence during the transition to parenthood. Using strength-based psychological concepts, this study aimed to identify the facilitators of and barriers to the development of positive psychological states in young Australian mothers. Design/Methods Using semi-structured interview questions, 11 women who had given birth between 15 and 22 were asked to share their experiences of pregnancy, birth, and motherhood. Their responses were analysed using the Framework method; initially coding the data to a priori themes such as resilience and social support, and then to higher order themes. Results Five higher order themes were developed from participant responses: 1. Everything is about to change, 2. Disrespected and disempowered, 3. Resilience, 4. It takes a village, and 5. A hopeful future. Across these themes, participants described the mixed emotional experiences of pregnancy and birth, experiences of stigma from various sources, efforts to maintain mental wellbeing, reliance on support networks, and aspirations for themselves and their children. Conclusion Findings from the current study highlight several key strategies for managing the challenges of early motherhood and promoting positive psychological states. Recommendations include fostering self-efficacy, supporting identity development, and establishing strong support networks across social and healthcare contexts. Recognizing and celebrating the strengths of young mothers is essential for effectively supporting them through the complex experience of motherhood.

Perceptions of impure innovation: Health professionals’ experiences and management of stigmatization when working as digital innovators

The healthcare sector has increasingly adopted digital innovations. Nonetheless, medical professionals have also resisted a variety of digital innovations. While the range of factors driving such resistance to innovation are well documented, less clear is how such resistance is experienced and managed by professionals attempting to innovate. We conducted a qualitative study of English and German ‘dual-role’ professionals, who worked both as clinical practitioners and digital innovators. Inductively theorizing from our interview data, we explain how individual professionals experience different intensities of stigmatization from colleagues when working with digital innovations. We theorize that the more central a dual-role professional is within an organization and the more their innovation deviates from standard professional duties, the more likely the innovation is to be viewed as impure within a professional group and be the target of stigmatization. We identify a range of professional, social, and personal strategies employed by dual-role innovators to manage their experiences of stigmatization and consider the implications for healthcare innovation.

Predictors and mechanisms of self-stigma in five chronic skin diseases: A systematic review.

People with skin disease suffer due to disease-related physical symptoms, as well as due to significant psychosocial burden. A major contributor of this burden is the experience of stigmatization. Research indicates that people with visible skin diseases deal with both social stigma and self-stigma. This systematic literature review aimed to aggregate existing research on correlates and mechanisms that contribute to self-stigmatization among people with atopic dermatitis, psoriasis, vitiligo, alopecia areata or hidradenitis suppurativa and to, ultimately, identify targets for psychosocial interventions. The review followed PRISMA guidelines. Four databases, PubMed, OVID, Web of Science and PsycINFO were searched for peer-reviewed articles. Studies were identified by two independent researchers and were eligible if they (1) assessed adults with one of five chronic skin diseases-atopic dermatitis, psoriasis, vitiligo, alopecia areata or hidradenitis suppurativa, (2) measured self-stigma or relevant synonyms, (3) evaluated psychosocial correlates, predictors or explanatory mechanisms of self-stigma and (4) were published in German or English in a peer-reviewed journal. The Johanna Briggs Institute Checklist for Analytical Cross Sectional Studies was used to evaluate the quality of studies. Twenty-seven studies were included with a mean quality rating of 7.04 (outof 8). Social stigma, coping strategies (such as lack of acceptance) and lack of social support were identified as main predictors of self-stigma. Although study quality was good, all but one study had a cross-sectional design that does not allow examining causal relationships among the determinants of self-stigma. Findings from the present review revealed several psychosocial variables that are malleable and potentially suitable as intervention targets. Those variables such as acceptance should be targeted in evidence-based interventions specifically developed to reduce self-stigma to, ultimately, improve mental health of people affected.

"Everyone blames you": Stigma and caregiver burden among parents of children with substance use disorder.

Recent increases in drug overdose deaths have created a significant public health crisis in the United States. Individuals diagnosed with substance use disorder (SUD) often rely on their social support network as they engage in treatment and recovery. While support from parents, in particular, can be vital in recovery, stress associated with supporting loved ones with SUD can have detrimental effects on health and well-being. Stigma toward parents and loved ones further complicates the support they can offer. The present study explores caregiver burden and stigma experienced by parents of children with SUD. The impact of these experiences on their ability to access support and resources, both for themselves and their children, is of particular interest. In-depth one-on-one interviews were conducted with 25 parents (92% mothers) of children (ages 17-32 years old) with SUD. Qualitative thematic analysis resulted in three themes: (1) caregiving and associated burden, (2) parent experiences with SUD stigma, and (3) impact of stigma on caregiver support. Experiences of burden and stigma were prevalent; parents reported stigma directed at them due to their child's diagnosis (associative stigma) as well as psychological distress they experienced witnessing their children experience stigma (vicarious stigma). Fear of judgment and shame led parents to avoid disclosing their child's SUD to others and impeded help-seeking behavior. When parents did seek formal help, resources were limited and insufficient. The findings underscore the need for increased understanding and acceptance from the community, emphasizing the potential role of education in reshaping perceptions. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Disclosure and Experiences of HIV-Related Stigma among Adolescents and Young Adults Living with HIV in South Africa.

Social networks expand rapidly in adolescence, increasing HIV status disclosure considerations and concerns for young people living with HIV, especially in settings where HIV-related stigma is prevalent. This study examines HIV disclosure and enacted stigma among adolescents and young adults living with HIV in South Africa. This study uses survey data from a sample of 1186 youth living with HIV, aged 14-24, and enrolled in peer support groups led by community-based organizations in KwaZulu Natal and Gauteng provinces, South Africa. Study participants completed a questionnaire on sociodemographic details, physical health, school attendance, who knew the individual's HIV status, and experiences of HIV-related mistreatment. Mixed effects logistic regression examined the association between experiences of HIV-related mistreatment and factors that may inadvertently disclose one's status, such as poor physical health and missed school, and knowledge of an individual's HIV-positive status by their caregiver, household, friends, educators, and most recent sexual partner. Almost a quarter of the sample reported an experience of HIV-related mistreatment in the past six months. After controlling sociodemographic characteristics, missed school due to illness (AOR = 1.75, 95% CI = 1.27-2.43), and knowledge of HIV status by non-family members (AOR = 2.19, 95% CI = 1.60-3.00) were significantly associated with HIV-related mistreatment. Findings suggest that experiences of enacted stigma are common among youth and linked to poor physical health and knowledge of HIV status outside the family. Effective community-level stigma reduction interventions are urgently needed. In the meantime, adolescents need individualized disclosure counseling and support managing their physical health to prevent further inadvertent disclosure and discrimination.

“I Felt Like There Was Something Wrong in My Brain”: Growing Up with Trauma – How Young People Conceptualise, Self-Manage and Seek Help for Mental Health Problems

Abstract Background Youth mental health is an important global healthcare topic and early interventions that are timely and evidence-based to support young people can increase quality of life and lower deaths by suicide. Research exploring young people’s mental health experiences and how they manage can further understanding into help-seeking processes. Objective This study aimed to explore young people’s experiences of living with and managing mental health problems and how this impacts professional help-seeking. Methods Eighteen young people were recruited, aged 16–25 years, with experiences of help-seeking to services for mental health problems (N = 18). Data were analysed using Constructivist Grounded Theory methods (Charmaz, Constructing grounded theory, 2014). Findings The findings were presented across three sub-categories: (1) “Early experiences”; (2) “Conceptualising mental health” and (3) “Managing mental health”. Findings expand understanding on the resource pressures that young people experience whilst managing persistent mental distress emanating from early experiences of trauma, life stressors, and developmental tasks. Findings also report lived experiences of pain, loneliness and stigma, and how individual conceptualisations of mental health are informed. The preference for self-reliance can be rooted in developmental needs or learned behaviours and how this impacts self-management and help seeking is discussed. Conclusion Through an enhanced understanding about how young people experience mental distress, developmental pressure points, marginalisation and stigma, mental health providers can prioritise individualised approaches to healthcare that can both respect a young person’s individual conceptualizations and positively leverage self-management strategies, which can contribute positively to young people’s development, quality of life, and healthcare outcomes.

"My addiction doesn't define me": Healing from the stigma of addiction for mothers with opioid use disorder.

About 1 in 8 children under age 17 live with a parent who has a substance use disorder. Research on treatment access identifies stigma as a significant barrier to treatment, particularly among mothers with young children. Well-meaning but punitive state policies further perpetuate stigma, which harms families and children. Explore the experiences of the stigma of addiction on mothers before, during and after treatment for substance use disorder. Procedures/data/observations: Descriptive Phenomenology was used to describe the experiences of stigma of mothers with opioid use disorder (OUD) through all stages of treatment and recovery. Mothers (n=20) participating in an outpatient treatment program interviewed. A semi-structured interview schedule was used to guide the interviews and thematic analysis was used identify themes related to stigma. Our analysis identified several main themes and subthemes related to internal and external sigma, including stigma against medication for opioid use dis order, stigma from the public and healthcare professionals, internalized shame, and how mothers learned to recover and heal from stigma.

Patient Perceptions of Weight Stigma Experiences in Healthcare: A Qualitative Analysis.

Weight stigma is the social devaluation and denigration of individuals because of their excess body weight, resulting in poorer physical and mental health and healthcare avoidance. Attribution Theory and Goffman's theory of spoiled identity provided a general overarching framework for understanding weight stigma experiences. Our purpose was to explore weight stigma experiences from a broad range of perspectives emphasizing identities typically excluded in the weight stigma literature. We conducted a qualitative descriptive study with data drawn from 73 substantive narrative comments from participants who responded to a larger survey. Analysis developed five themes: Working on weight, Not being overweight, Lack of help and empathy, Exposure and embarrassment and Positive experiences. Individuals who would be clinically assessed as overweight, especially men, often did not identify with having a weight problem and found the framing of personal responsibility for weight empowering. Participants with larger body sizes more often attributed embarrassment and shame about weight to treatment in the clinical setting. Older participants were more likely to have positive experiences. The findings suggest ongoing tension between the framing of weight as a personal responsibility as opposed to a multifactorial condition with many uncontrollable aspects. Gender, age and body size shaped respondent perspectives, with some young male respondents finding empowerment through perceived personal control of weight. The healthcare system perpetuates weight stigma through lack of adequate equipment and excessively weight-centric medical counselling. Recommending a healthy lifestyle to patients without support or personalized medical assessment may perpetuate weight stigma and associated detrimental health outcomes. Patients with obesity and overweight were integral to this study, providing comments for our qualitative analyses.

Development and Preliminary Validation of Scales to Measure Enacted, Perceived, and Experienced Hearing Loss Stigma in Health Care Settings.

Qualitative evidence suggests that stigma experienced by people who are d/Deaf and hard of hearing (d/DHH) can reduce willingness to engage with health services. Quantitative evidence remains lacking, however, about how health care providers (HCPs) perceive societal stigma toward people who are d/DHH, how HCPs might enact d/DHH stigma within provider-patient encounters, and what patients who are d/DHH share with providers about those patients' perceptions and experiences of stigma. Such quantitative evidence would allow HCPs to understand if and how stigma influences hearing health decisions made by people who are d/DHH. It could also shape practices to reduce d/DHH stigma within clinical encounters and guide providers in considering stigma as a driving force in their patients' hearing health care decisions. Building that evidence base requires validated quantitative measures. In response, the present study initiated an iterative process toward developing and preliminarily validating HCP self-report measures for different forms of d/DHH stigma. These measures draw upon HCPs' own perspectives, as well as their reports of secondhand information about stigma shared during clinical conversations. We developed and preliminary validated four measures: (1) provider-perceived stigma (HCPs' perceptions of the existence of negative attitudes and stereotypes toward d/DHH individuals in society), (2) provider-enacted stigma (self-reported subtle or indirect acts of stigma HCPs might commit during clinical encounters), (3) secondhand patient-experienced stigma (external acts of stigma reported to HCPs by patients who are d/DHH during clinical encounters), and (4) secondhand patient-perceived stigma (perceptions of negative attitudes and stereotypes reported to HCPs by patients who are d/DHH during clinical encounters). Scale items were extracted from a comprehensive literature review of stigma measures. Question stems and individual items were adapted for HCPs, cognitively tested on 5 HCPs, and pretested with 30 HCPs. The 4 scales were then validated on a sample of primary care providers and hearing care specialists (N = 204) recruited through an online survey. All data were collected in the United States. We conducted an exploratory factor analysis of the four proposed d/DHH stigma HCP stigma scales. Scale items loaded satisfactorily with ordinal alphas ranging between 0.854 and 0.944. The four measures developed and preliminarily validated in this study can provide opportunities for HCPs to develop a more nuanced understanding of stigma experienced and perceived by their patients who are d/DHH and how that stigma manifests across social contexts, including health care settings. Further, the ability to assess forms of d/DHH stigma in clinical encounters, as well as their association with patient disengagement and resistance to advanced hearing care, could lead to innovative stigma-reduction interventions. Such interventions could then be evaluated using the measures from this article and then applied to clinical practice. We envision these measures being further refined, adapted, and tested for a variety of health care contexts, including primary care settings where hearing difficulties may first be identified and in hearing health care settings where audiologic rehabilitation is initiated.

Preliminary Validation of Stigma Measures Among Parents of Children Who Are d/Deaf or Hard of Hearing in the United States and Ghana

Objectives: Parents are integral to the development and overall well-being of their child. Previous research has studied the emotional effects parenting experiences have on parents. However, parents caring for children with disabilities have unique parenting experiences, filled with both victories and challenges. Parenting a child with disabilities can bring additional responsibilities as parents respond to their child’s special needs. Specifically, parents of children who are d/Deaf or hard of hearing (d/DHH) are required to make ongoing life-changing decisions about their child’s life, including mode of communication, medical care, and education. Across the world, many adults who are d/DHH experience stigma. However, less is known about the stigma faced by children who are d/DHH and their parents. Measuring the nature and magnitude of stigma-affecting parents of children who are d/DHH could offer insights into how to additionally support these parents. Nonetheless, there is a gap in validated scales to measure stigma among parents of children who are d/DHH. In response, we developed and preliminarily validated five measures of stigma among parents of children who are d/DHH. Design: Measures were developed through a mixed-method process: (1) a scoping literature review, (2) a modified Delphi process consisting of two group discussions (n = 3, n = 4) and two individual discussions with parents of children who are d/DHH from high-income countries (HICs) and low- and middle-income countries (LMICs), (3) cognitive interviews with parents of children who are d/DHH in the United States (U.S.) (n = 5) and Ghana (n = 5), and (4) a pretest of the survey in the U.S. (n = 28) and Ghana (n = 30). Modifications to the measures were made after each stage. This article focuses on evaluating the psychometric performance of the developed measures. Parents were recruited in the U.S. (n = 100) and Ghana (n = 173). Convenience sampling was used in both countries. In Ghana, survey administration was in-person with trained interviewers collecting data on tablets. In the U.S. data were collected online through self-administered surveys. Results: The final five scales measured: (1) parental observation of stigma their child experiences (seven items), (2) parental perceptions of stigma toward their child (eight items), (3) parental secondary experienced stigma (eight items), (4) perceived parental secondary stigma (five items), and (5) parental internalized stigma (seven items). All scales performed strongly and similarly across both country samples. The scales had ordinal αs ranging from 0.864 to 0.960, indicating strong reliability. Conclusions: This study provides a set of preliminarily validated stigma measures to capture the experience of parents of children who are d/DHH. Measuring stigma among parents is critical to understanding parental mental health, as parental well-being affects the health and development of their child. Furthermore, measuring observed stigma by parents can allow the researcher to gain an understanding of the stigma experienced by children who are d/DHH that they may not be able to communicate. Further studies testing these measures across other countries and with more diverse samples are needed.