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.

Measuring intersectional HIV, sexual diversity, and gender non-conformity stigma among healthcare workers in Ghana: scale validation and correlates of stigma.

BACKGROUND: Men who have sex with men (MSM) are at heightened risk for HIV acquisition, yet they may delay or avoid HIV testing due to intersectional stigma experienced at the healthcare facility (HCF). Few validated scales exist to measure intersectional stigma, particularly amongst HCF staff. We developed the Healthcare Facility Staff Intersectional Stigma Scale (HCF-ISS) and assessed factors associated with stigma in Ghana. METHODS: We analyzed baseline data from HCF staff involved in a study testing a multi-level intervention to reduce intersectional stigma experienced by MSM. Data are from eight HCFs in Ghana (HCF Staff n = 200). The HCF-ISS assesses attitudes and beliefs towards same-sex relationships, people living with HIV (PLWH) and gender non-conformity. Exploratory factor analysis assessed HCF-ISS construct validity and Cronbach's alphas assessed the reliability of the scale. Multivariable regression analyses assessed factors associated with intersectional stigma. RESULTS: Factor analysis suggested an 18-item 3-factor scale including: Comfort with Intersectional Identities in the Workplace (6 items, Cronbach's alpha = 0.71); Beliefs about Gender and Sexuality Norms (7 items, Cronbach's alpha = 0.72); and Beliefs about PLWH (5 items, Cronbach's alpha = 0.68). Having recent clients who engage in same-gender sex was associated with greater comfort with intersectional identities but more stigmatizing beliefs about PLWH. Greater religiosity was associated with stigmatizing beliefs. Infection control training was associated with less stigma towards PLWH and greater comfort with intersectional identities. CONCLUSIONS: Achieving the goal of ending AIDS by 2030 requires eliminating barriers that undermine access to HIV prevention and treatment for MSM, including HCF intersectional stigma. The HCF-ISS provides a measurement tool to support intersectional stigma-reduction interventions.

Using a mixed-methods approach to adapt an HIV stigma reduction to address intersectional stigma faced by men who have sex with men in Ghana.

INTRODUCTION: In Ghana, men who have sex with men (MSM) are estimated to be 11 times more likely to be living with HIV than the general population. Stigmas at the intersection of HIV, same-sex and gender non-conformity are potential key drivers behind this outsized HIV disease burden. Healthcare workers (HCWs) are essential to HIV prevention, care and treatment and can also be sources of stigma for people living with HIV and MSM. This article describes the process and results of adapting an evidence-based HIV stigma-reduction HCW training curriculum to address HIV, same-sex and gender non-conformity stigma among HCWs in the Greater Accra and Ashanti regions, Ghana. METHODS: Six steps were implemented from March 2020 to September 2021: formative research (in-depth interviews with stigma-reduction trainers [n = 8] and MSM living with HIV [n = 10], and focus group discussions with HCWs [n = 8] and MSM [n = 8]); rapid data analysis to inform a first-draft adapted curriculum; a stakeholder adaptation workshop; triangulation of adaptation with HCW baseline survey data (N = 200) and deeper analysis of formative data; iterative discussions with partner organizations for further refinement; external expert review; and final adaptation with the teams of HCWs and MSM being trained to deliver the curriculum. RESULTS: Key themes emerging under four immediately actionable drivers of health facility intersectional stigma (awareness, fear, attitudes and facility environment) informed the adaptation of the HIV training curriculum. Based on the findings, existing curriculum exercises were placed in one of four categories: (1) Expand-existing exercises that needed modifications to incorporate deeper MSM and gender non-conformity stigma content; (2) Generate-new exercises to fill gaps; (3) Maintain-exercises to keep with no modifications; and (4) Eliminate-exercises that could be dropped given training time constraints. New exercises were developed to address gender norms, the belief that being MSM is a mental illness and stigmatizing attitudes towards MSM. CONCLUSIONS: Getting to the "heart of stigma" requires understanding and responding to both HIV and other intersecting stigma targeting sexual and gender diversity. Findings from this study can inform health facility stigma reduction programming not only for MSM, but also for other populations affected by HIV-related and intersectional stigma in Ghana and beyond.