Department of Physiological Nursing, School of Nursing, University of California, San Francisco, California, USA.
Department of Health Management and Policy, Georgetown University, Washington, DC, USA.
Ear Hear. 2024;45(Suppl 1):35S-41S. doi: 10.1097/AUD.0000000000001540. Epub 2024 Sep 19.
A great deal of literature documents the significant demands, both physical and psychosocial, that care partners experience when providing care to persons with a range of health conditions. There is, however, far less research available on care partners of adult persons who are d/Deaf or hard of hearing (d/DHH). In response to this gap, the authors developed measures of d/DHH stigma among care partners as part of the work of the Lancet Commission on Hearing Loss' Measures, Models, and Stigma Reduction Subgroup. The measures examined in this article are part of a larger set of parallel measures to enable comparison of stigma measurement across groups.
The present study describes the preliminary validation of five stigma scales specifically tailored for use to assess the prevalence and effect of stigma on the care partners of adult people who are d/DHH in the United States. Care partners in this context are defined broadly and can include spouses, partners, adult children, siblings, and friends of persons who are d/DHH. The scales describe the care partner's own assessment of how the person who is d/DHH experiences and perceives stigma as well as the care partner's own internalized, experienced, and perceived stigma as a result of their association with a person who is d/DHH. This latter set of three scales describes secondary stigma, or the stigma a person experiences related to their association with a member of a stigmatized group. Measures were developed through a process that included a literature review, Delphi groups with people who became d/DHH after they developed spoken language, cognitive interviews, and a pretest. An online, self-administered preliminary validation survey was conducted with 151 care partners.
Results support the internal reliability of each of the five stigma scales (ordinal α's all greater than 0.9) and that each scale is assessing a single factor.
Additional testing is needed to confirm the validity of these measures. After further validation, they can be used to assess the prevalence and effect of stigma on care partners of persons who are d/DHH and to evaluate the success of interventions developed to address stigma and its effects both on the care partner and the person who is d/DHH and receiving the care.
大量文献记录了护理人员在为各种健康状况的人提供护理时所面临的巨大的身体和心理社会需求。然而，对于成年聋人或重听人士（d/DHH）的护理人员的研究却少得多。针对这一差距，作者们开发了护理人员对 d/DHH 的污名感测量方法，作为柳叶刀听力损失委员会措施、模型和减少污名分组工作的一部分。本文中检查的措施是一组更大的平行措施的一部分，以使跨组的污名测量进行比较。
本研究描述了五个专门为评估美国成年 d/DHH 人士的护理人员的污名流行率和影响而量身定制的污名量表的初步验证。在这种情况下，护理人员被广泛定义，可以包括配偶、伴侣、成年子女、兄弟姐妹和 d/DHH 人士的朋友。这些量表描述了护理人员对 d/DHH 人士自身经历和感知污名的评估，以及护理人员由于与 d/DHH 人士的关系而产生的内化、经历和感知污名。后一组三个量表描述了二级污名，即一个人由于与受污名群体的成员有关而经历的污名。这些措施是通过一个包括文献综述、有口语能力后成为 d/DHH 的人的德尔菲小组、认知访谈和预测试的过程开发的。对 151 名护理人员进行了在线、自我管理的初步验证调查。
结果支持五个污名量表中的每一个量表的内部可靠性（等级 α 均大于 0.9），并且每个量表都在评估一个单一因素。
需要进一步测试来确认这些措施的有效性。在进一步验证后，它们可用于评估 d/DHH 人士的护理人员的污名流行率和影响，以及评估为解决污名及其对护理人员和接受护理的 d/DHH 人士的影响而开发的干预措施的效果。
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