Hearing Loss and Quality of Life of Children and Youth

描述(申请人提供)：目标：我们将开发和测试听力损失特定生活质量(QOL)模块，旨在对听力损失的环境和心理社会影响敏感，目标是开发一种新的、多维的工具，用于评估干预措施。目的：1.通过对11-18岁的青少年和5-10岁儿童的父母进行深入访谈和焦点小组的研究，找出关键的QOL问题，开发出针对听力损失儿童和青少年的QOL项目；2.使用经典和项目反应理论方法验证听力损失特定QOL模块的横断面测量特性；3.采用整群抽样设计，探讨D/HH程度与生活质量及已知或预期相关因素之间的关系；4.利用验证结果修订青少年和家长报告D/HH模块草稿，并传播新的D/HH模块意义：早期听力损失对言语、语言和沟通技能的发展具有广泛公认的影响。因此，人际关系和社会发展受到影响，影响儿童的幸福感。反映这一基本结构的措施需要用于需求评估、研究、方案设计和方案评估。创新：我们打算使用一种基于需求的方法，积极让代表各种听力损失和文化背景的父母和年轻人参与进来，建立一个理论驱动的QOL衡量标准。方法与分析：研究1：对30名11-18岁的聋人青年和至少30名5-10岁听力损失范围和种族的儿童的父母进行深度访谈，以达到冗余的程度。家长和年轻人组成的焦点小组将加强深度采访。将进行认知汇报，将项目改编成视频形式，并进行可读性分析，以制作测试模块。研究二：随机抽取走读学校D/HH项目的500名青少年及其家长/监护人、D/HH寄宿学校的90名D/HH寄宿学校的青少年及其父母/监护人作为效标样本，完成测验量表(S)和其他问卷，最长45分钟。量表的编制将采用经典方法和项目反应理论方法。将对工具的信度和结构效度进行测试。最初的传播将在华盛顿、科罗拉多州和亚利桑那州参与该项目的学区和治疗设施进行。仪器将以最低价格以DVD形式提供。调查人员：一个由经验丰富的仪器开发人员、熟悉听力损失管理方案的临床医生组成的跨学科团队，以及积极参与为听力损失患者丰富社区资源的计划的调查人员，将合作招募、研究、展示和发布结果并传播结果的仪器。

DESCRIPTION (provided by applicant): Goal: We will develop and test hearing-loss specific quality-of-life (QoL) modules designed to be sensitive to environmental and psychosocial effects of hearing loss with the goal of developing a novel, multidimensional tool for use in evaluating interventions. Aims: 1. identify key QoL issues and develop QoL items specific to children and youth with hearing loss by conducting in-depth interviews and focus groups with youth ages 11-18 years and with parents of children ages 5-10 years ; 2. validate the cross-sectional measurement properties of hearing-loss specific QoL modules using classical and item-response theory methods; 3. explore association of degree of D/HH with QoL and known or expected correlates, using a clustered sample design and 4. revise the draft youth- and parent-report D/HH Modules using validation results and to disseminate the new D/HH Modules Significance: Hearing loss in early life carries broadly recognized implications for the development of speech, language, and communication skills. Consequently, interpersonal relationships and social development are affected, influencing a child's sense of well-being. Measures that reflect this fundamental construct are needed for use in needs assessment, research, program design and program evaluation. Innovation: We intend to build a theoretically-driven QoL measure using a needs-based approach that actively involves parents and youth who represent a range of hearing losses and cultural backgrounds. Methods and Analysis: Study 1: In-depth interviews to the point of redundancy with a minimum of 30 deaf youth ages 11-18 years and a minimum of 30 parents of children ages 5-10 years with range of hearing loss and ethnicity. Focus groups with parents and young adults will augment in-depth interviews. Cognitive debriefing, adaptation of items into video form, and readability analyses will be conducted to produce test modules. Study 2: Validation sample of 500 youth who are in D/HH programs in day schools and their parents\guardians, 90 youth and their parent\guardians who are in D/HH residential schools will be recruited to complete test instrument(s) and other questionnaires taking a maximum of 45 minutes. Classical and item-response theory methods will be used for scale development. Instrument reliability and construct validity will be tested. Initial dissemination will occur in school districts and treatment facilities participating in the project in Washington, Colorado, and Arizona. Instruments will be available on DVD at minimum cost. Investigators: An interdisciplinary team of experienced instrument developers, clinicians familiar with options for management of hearing loss, and investigators actively involved in programs to enrich community resources for those with hearing loss will collaborate to recruit, study, present and publish results and disseminate resulting instruments.