Ammons Donalda, Engelman Alina, Kushalnagar Poorna
Deaf Seniors of America and National Association of the Deaf, Washington, DC, USA.
California State University, East Bay, Hayward, CA, USA.
Gerontol Geriatr Med. 2020 Oct 21;6:2333721420966518. doi: 10.1177/2333721420966518. eCollection 2020 Jan-Dec.
No studies have included the experiences and needs of informal caregivers who are deaf, use American Sign Language (ASL), and care for a loved one with Alzheimer's disease or related dementias (ADRD). The CDC's BRFSS Caregiver Module and PROMIS-Deaf Profile measures were administered via an online bilingual English/ASL platform between October 2019 and March 2020. Out of 194 deaf adult signers who completed an online survey, 42 respondents (mean age = 66; SD = 12; 74% White) endorsed informally caring for someone with a medical condition. In this survey subsample of informal caregivers, more years of education was significantly associated with higher generic quality of life and higher deaf-specific quality of life. A smaller subset of informal deaf informal caregivers who were currently taking care of loved ones with ADRD were then invited to participate in a semi-structured interview. Among the 22 informal caregivers who were interviewed, there was a strong agreement among the participants who felt that their quality of life as informal caregivers was worse than hearing informal caregivers who took care of loved ones with ADRD. Findings highlight the importance of a call to action to address the needs of deaf informal ADRD caregivers.
尚无研究涉及失聪、使用美国手语（ASL）且照料患有阿尔茨海默病或相关痴呆症（ADRD）亲人的非正式照料者的经历和需求。2019年10月至2020年3月期间，通过在线英语/ASL双语平台实施了美国疾病控制与预防中心的行为风险因素监测系统（BRFSS）照料者模块和失聪专用患者报告结果测量信息系统（PROMIS）失聪概况测量。在194名完成在线调查的失聪成年手语使用者中，42名受访者（平均年龄 = 66岁；标准差 = 12；74%为白人）认可自己在非正式照料患有某种疾病的人。在这个非正式照料者的调查子样本中，受教育年限越长，总体生活质量和失聪特定生活质量越高的相关性越显著。随后，邀请了一小部分目前正在照料患有ADRD亲人的失聪非正式照料者参加半结构化访谈。在接受访谈的22名非正式照料者中，参与者们强烈认同，他们作为非正式照料者的生活质量比照料患有ADRD亲人的听力正常的非正式照料者更差。研究结果凸显了采取行动满足失聪ADRD非正式照料者需求的重要性。
