RESUMEN
People who are d/Deaf or hard of hearing (d/DHH) often experience stigma and discrimination in their daily lives. Qualitative research describing their lived experiences has provided useful, in-depth insights into the pervasiveness of stigma. Quantitative measures could facilitate further investigation of the scope of this phenomenon. Thus, under the auspices of the Lancet Commission on Hearing Loss, we developed and preliminarily validated survey measures of different types of stigma related to d/Deafness and hearing loss in the United States (a high-income country) and Ghana (a lower-middle income country). In this introductory article, we first present working definitions of the different types of stigma; an overview of what is known about stigma in the context of hearing loss; and the motivation underlying the development of measures that capture different types of stigma from the perspectives of different key groups. We then describe the mixed-methods exploratory sequential approach used to develop the stigma measures for several key groups: people who are d/DHH, parents of children who are d/DHH, care partners of people who are d/DHH, healthcare providers, and the general population. The subsequent manuscripts in this special supplement of Ear and Hearing describe the psychometric validation of the various stigma scales developed using these methods.
Asunto(s)
Sordera , Pérdida Auditiva , Estigma Social , Humanos , Sordera/psicología , Sordera/rehabilitación , Pérdida Auditiva/psicología , Ghana , Personas con Deficiencia Auditiva/psicología , Estados Unidos , Encuestas y CuestionariosRESUMEN
OBJECTIVES: In this article, we examine the psychometric performance of 3 scales measuring experienced, perceived, and internalized d/Deaf or hard of hearing (d/DHH) stigma among adult (18 and older) populations of individuals who are d/DHH, including those who have been d/DHH since before they developed language (lifelong) and those who became d/DHH after they developed language (acquired) in the United States and Ghana. DESIGN: The preliminary validation study took place in the Greater Accra and Eastern regions of Ghana and across the United States. In the United States, all data were collected online via self-administered surveys in English. In Ghana, trained interviewers who are d/DHH and fluent in Ghanaian Sign Language conducted interviews with participants who are lifelong d/DHH using a video survey. Ghanaian participants with acquired d/DHH status were surveyed by trained hearing interviewers. We calculated polychoric correlation matrices between the measures to remove redundant and unrelated items and used exploratory factor analysis to create the final scales. We also tested the association between the factor scores and a simple summing method for calculating the scale. RESULTS: The study sample included people who have been d/DHH since before they developed language (Ghana: n = 171, United States n = 100) and people who became d/DHH after they developed language (Ghana: n = 174, United States: n = 219). The final experienced, perceived, and internalized scales included six, seven, and five items, respectively. All three scales performed well as unidimensional measures across all four samples. Across the four samples, the experienced, perceived, and internalized stigma scales yielded ordinal αs ranging from 0.725 to 0.947, 0.856 to 0.935, and 0.856 to 0.935, respectively. It would be acceptable to operationalize all stigma scales as sum-of-item scores. CONCLUSIONS: The scales performed well and appear to provide a valid means of measuring different types of stigma among diverse groups of people who are d/DHH. Future work should refine and validate these scales in additional contexts.
Asunto(s)
Pérdida Auditiva , Psicometría , Estigma Social , Humanos , Ghana , Adulto , Femenino , Masculino , Estados Unidos , Persona de Mediana Edad , Adulto Joven , Pérdida Auditiva/psicología , Sordera/psicología , Sordera/rehabilitación , Anciano , Personas con Deficiencia Auditiva/psicología , Adolescente , Encuestas y Cuestionarios , Reproducibilidad de los ResultadosRESUMEN
OBJECTIVES: To describe development and implementation of a three-stage 'total facility' approach to reducing health facility HIV stigma in Ghana and Tanzania, to facilitate replication. DESIGN: HIV stigma in healthcare settings hinders the HIV response and can occur during any interaction between client and staff, between staff, and within institutional processes and structures. Therefore, the design focuses on multiple socioecological levels within a health facility and targets all levels of staff (clinical and nonclinical). METHODS: The approach is grounded in social cognitive theory principles and interpersonal or intergroup contact theory that works to combat stigma by creating space for interpersonal interactions, fostering empathy, and building efficacy for stigma reduction through awareness, skills, and knowledge building as well as through joint action planning for changes needed in the facility environment. The approach targets actionable drivers of stigma among health facility staff: fear of HIV transmission, awareness of stigma, attitudes, and health facility environment. RESULTS: The results are the three-stage process of formative research, capacity building, and integration into facility structures and processes. Key implementation lessons learned included the importance of formative data to catalyze action and shape intervention activities, using participatory training methodologies, involving facility management throughout, having staff, and clients living with HIV facilitate trainings, involving a substantial proportion of staff, mixing staff cadres and departments in training groups, and integrating stigma-reduction into existing structures and processes. CONCLUSION: Addressing stigma in health facilities is critical and this approach offers a feasible, well accepted method of doing so.
Asunto(s)
Actitud del Personal de Salud , Infecciones por VIH/psicología , Personal de Salud/psicología , Estigma Social , Atención a la Salud , Ghana , Infecciones por VIH/terapia , Instituciones de Salud , Humanos , Encuestas y Cuestionarios , TanzaníaRESUMEN
INTRODUCTION: Stigma undermines all aspects of a comprehensive HIV response, as reflected in recent global initiatives for stigma-reduction. Yet a commensurate response to systematically tackle stigma within country responses has not yet occurred, which may be due to the lack of sufficient evidence documenting evaluated stigma-reduction interventions. With stigma present in all life spheres, health facilities offer a logical starting point for developing and expanding stigma reduction interventions. This study evaluates the impact of a "total facility" stigma-reduction intervention on the drivers and manifestations of stigma and discrimination among health facility staff in Ghana. METHODS: We evaluated the impact of a total facility stigma-reduction intervention by comparing five intervention to five comparable non-intervention health facilities in Ghana. Interventions began in September 2017. Data collection was in June 2017 and April 2018. The primary outcomes were composite indicators for three stigma drivers, self-reported stigmatizing avoidance behaviour, and observed discrimination. The principal intervention variable was whether the respondent worked at an intervention or comparison facility. We estimated intervention effects as differences-in-differences in each outcome, further adjusted using inverse probability of treatment weighting (IPTW). RESULTS: We observed favourable intervention effects for all outcome domains except for stigmatizing attitudes. Preferring not to provide services to people living with HIV (PLHIV) or a key population member improved 11.1% more in intervention than comparison facility respondents (95% CI 3.2 to 19.0). Other significant improvements included knowledge of policies to protect against discrimination (difference-in-differences = 20.4%; 95% CI 12.7 to 28.0); belief that discrimination would be punished (11.2%; 95% CI 0.2 to 22.3); and knowledge of and belief in the adequacy of infection control policies (17.6%; 95% CI 8.3 to 26.9). Reported observation of stigma and discrimination incidents fell by 7.4 percentage points more among intervention than comparison facility respondents, though only marginally significant in the IPTW-adjusted model (p = 0.06). Respondents at intervention facilities were 19.0% (95% CI 12.2 to 25.8) more likely to report that staff behaviour towards PLHIV had improved over the last year than those at comparison facilities. CONCLUSIONS: These results provide a foundation for scaling up health facility stigma-reduction within national HIV responses, though they should be accompanied by rigorous implementation science to ensure ongoing learning and adaptation for maximum effectiveness and long-term impact.