Hearing Loss and Quality of Life of Children and Youth

儿童和青少年的听力损失和生活质量

• 批准号: 7559590
• 负责人: Donald Lee Patrick
• 金额: $ 41.08万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-03-06 至 2011-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7559590
• 关键词: Activities of Daily Living; Adolescence; Affect; Age; Anxiety; Arizona; Child; Childhood; Clinical; Clinical Trials; Cognitive; Colorado; Communication; Communities; Consultations; Counseling; Cues; Cultural Backgrounds; Data; Development; Device or Instrument Development; Educational Status; Elements; Environment; Ethnic Origin; Evaluation; Focus Groups; Goals; Grant; Healthy People 2010; Hearing; Hearing Impaired Persons; Human Development; Individual; Intervention; Interview; Language; Life; Literature; Measurement; Measures; Methods; Modeling; Needs Assessment; New Mexico; Parents; Perceived quality of life; Personal Satisfaction; Persons; Program Evaluation; Property; Psychometrics; Publishing; Qualitative Research; Quality of life; Questionnaires; Randomized; Readability; Reading; Recreation; Recruitment Activity; Reporting; Research; Research Personnel; Resources; Review Literature; Sample Size; Sampling; Schools; Site; Social Development; Speech Development; Surgeon; Testing; Treatment/Psychosocial Effects; United States Dept. of Health and Human Services; Update; Validation; Vision; Washington; Well in self; Work; Youth; base; cost; critical period; depression; design; experience; hearing impairment; innovation; instrument; novel; programs; response; skills; theories; tool; young adult

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.

描述（由申请人提供）： 目标：我们将开发和测试听力损失特定的生活质量 (QoL) 模块，该模块旨在对听力损失的环境和社会心理影响敏感，目标是开发一种新颖的多维工具用于评估干预措施。目标： 1. 通过对 11-18 岁青少年和 5-10 岁儿童家长进行深入访谈和焦点小组讨论，确定关键的生活质量问题，并制定专门针对听力损失儿童和青少年的生活质量项目； 2. 使用经典和项目反应理论方法验证听力损失特定生活质量模块的横截面测量特性； 3. 使用聚类样本设计探索 D/HH 程度与 QoL 以及已知或预期相关性的关联，并 4. 使用验证结果修订青少年和家长报告 D/HH 模块草案并传播新的 D/HH模块意义：早年听力损失对言语、语言和沟通技能的发展具有广泛认可的影响。因此，人际关系和社会发展受到影响，影响孩子的幸福感。需要反映这一基本结构的措施用于需求评估、研究、项目设计和项目评估。创新：我们打算使用基于需求的方法建立一个理论驱动的生活质量测量方法，积极让代表不同听力损失和文化背景的父母和青少年参与其中。方法和分析： 研究 1：对至少 30 名 11-18 岁的聋哑青少年和至少 30 名 5-10 岁的听力损失和种族不同的儿童家长进行深入访谈，直至达到冗余程度。家长和年轻人的焦点小组将加强深度访谈。将进行认知汇报、将项目改编成视频形式以及可读性分析来生成测试模块。研究 2：将招募 500 名在走读学校 D/HH 课程的青少年及其家长\监护人、90 名在 D/HH 寄宿学校的青少年及其家长\监护人进行验证样本，以完成测试仪器和其他问卷最多需要 45 分钟。经典方法和项目反应理论方法将用于量表开发。将测试仪器的可靠性和结构有效性。初步传播将在华盛顿、科罗拉多和亚利桑那州参与该项目的学区和治疗机构进行。仪器将以最低成本提供 DVD 版本。研究人员：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以及积极参与为听力损失者丰富社区资源的项目的研究人员组成的跨学科团队将合作招募、研究、展示和发布结果并传播由此产生的仪器。

项目成果

Caregiver-Reported Indicators of Communication and Social Functioning for Young Children Who Are Deaf or Hard of Hearing.

看护者报告的失聪或听力障碍幼儿的沟通和社交功能指标。

• 发表时间: 2018-07-01
• 作者: Patrick, Donald L;Edwards, Todd C;Kushalnagar, Poorna;Topolski, Tari;Schick, Brenda;Skalicky, Ann;Sie, Kathleen
• 通讯作者: Sie, Kathleen

Mode of communication, perceived level of understanding, and perceived quality of life in youth who are deaf or hard of hearing.

失聪或听力障碍青少年的沟通方式、感知理解水平和感知生活质量。

• 发表时间: 2011
• 作者: Kushalnagar, P;Topolski, T D;Schick, B;Edwards, T C;Skalicky, A M;Patrick, D L
• 通讯作者: Patrick, D L

Quality of life in youth with severe to profound sensorineural hearing loss.

患有严重至极重度感音神经性听力损失的青少年的生活质量。

• 发表时间: 2013-03
• 作者: Meyer, Abby;Sie, Kathleen;Skalicky, Anne;Edwards, Todd C;Schick, Brenda;Niparko, John;Patrick, Donald L
• 通讯作者: Patrick, Donald L

Validation of a quality-of-life measure for deaf or hard of hearing youth.

验证聋哑或听力困难青少年的生活质量衡量标准。

• 发表时间: 2011-07
• 作者: Patrick, Donald L;Edwards, Todd C;Skalicky, Anne M;Schick, Brenda;Topolski, Tari D;Kushalnagar, Poorna;Leng, Mei;O'Neill;Sie, Kathleen Sie
• 通讯作者: Sie, Kathleen Sie