Kushalnagar Poorna, McKee Michael, Smith Scott R, Hopper Melinda, Kavin Denise, Atcherson Samuel R
Chester F. Carlson Center for Imaging Sciences, Rochester Institute of Technology, 76-3270, 54 Lomb Memorial Drive, Rochester, New York 14623, USA.
Department of Family Medicine, University of Michigan, USA; Department of Public Health Sciences, University of Rochester, USA.
Disabil Health J. 2014 Jul;7(3):350-5. doi: 10.1016/j.dhjo.2014.04.001. Epub 2014 Apr 19.
A conceptual model of health-related quality of life (QoL) is needed to describe key themes that impact perceived QoL in adults with congenital or early deafness.
To revise University of Washington Center for Disability Policy and Research's conceptual model of health promotion and QoL, with suggestions for applying the model to improving programs or services that target deaf adults with early deafness.
Purposive and theoretical sampling of 35 adults who were born or became deaf early was planned in a 1-year study. In-depth semi-structured interviews probed deaf adult participants' perceptions about quality of life as a deaf individual. Data saturation was reached at the 17th interview with 2 additional interviews for validation, resulting in a total sample of 19 deaf adults. Coding and thematic analysis were conducted to develop the conceptual model.
Our conceptual model delineates the relationships between health status (self-acceptance, coping with limitations), intrinsic (functional communication skills, navigating barriers/self-advocacy, resilience) and extrinsic (acceptance by others, access to information, educating others) factors in their influence on deaf adult quality of life outcomes at home, college, work, and in the community.
Findings demonstrate the need for the programs and services to consider not only factors intrinsic to the deaf individual but also extrinsic factors in enhancing perceived quality of life outcomes among people with a range of functional hearing and language preferences, including American Sign Language.
需要一个与健康相关的生活质量（QoL）概念模型，以描述影响先天性或早期失聪成年人感知生活质量的关键主题。
修订华盛顿大学残疾政策与研究中心的健康促进和生活质量概念模型，并就如何将该模型应用于改进针对早期失聪的成年聋人的项目或服务提出建议。
在一项为期1年的研究中，计划对35名先天性或早期失聪的成年人进行有目的和理论性抽样。深入的半结构化访谈探究了成年聋人参与者对作为聋人的生活质量的看法。在第17次访谈时达到数据饱和，并额外进行了2次访谈以进行验证，最终样本为19名成年聋人。进行编码和主题分析以开发概念模型。
我们的概念模型描绘了健康状况（自我接受、应对限制）、内在因素（功能性沟通技巧、克服障碍/自我倡导、恢复力）和外在因素（他人的接受、信息获取、教育他人）之间的关系，这些因素对成年聋人在家庭、大学、工作和社区中的生活质量结果产生影响。
研究结果表明，项目和服务不仅需要考虑聋人个体的内在因素，还需要考虑外在因素，以提高包括使用美国手语在内的具有不同功能性听力和语言偏好的人群的感知生活质量结果。
