Caregiver Responses to Nasoalveolar Molding and Early Cleft Care

护理人员对鼻肺泡成型和早期唇裂护理的反应

• 批准号: 8244206
• 负责人: HILLARY L BRODER
• 金额: $ 27.18万
• 依托单位: NEW YORK UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-03-01 至 2014-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8244206
• 关键词: Adherence; Affect; Age-Months; American; Anterior nares; Anxiety; Appointment; Attention; Birth; Birth Order; Caregiver Burden; Caregivers; Caring; Characteristics; Child; Childhood; Chronic; Cicatrix; Cleaved cell; Cleft Palate; Clinic; Clinic Visits; Clinical; Congenital Abnormality; Cosmetics; Data; Decision Making; Defect; Deformity; Demographic Factors; Early treatment; Emotional; Environment; Equipment and supply inventories; Face; Family; Family Relationship; Foundations; Future; Goals; Habilitation; Health; Health Psychology; Health Sciences; Healthcare; Height; Home environment; Infant; Insurance; Intervention; Interview; Life; Lip structure; Literature; Medical; Mental Depression; Modiolus; Molds; New York; Newborn Infant; North Carolina; Nose; Office Visits; Operative Surgical Procedures; Oregon; Orthodontic; Parents; Pattern; Perception; Personal Satisfaction; Phase; Positioning Attribute; Premaxillary palate; Psychosocial Factor; Quality of life; Questionnaires; Research; Secondary Palate; Series; Severities; Site; Stents; Stress; Structure; System; Testing; Time; Universities; Width; Work; cleft lip and palate; cohesion; contextual factors; coping; craniofacial; functional outcomes; health related quality of life; improved; indexing; insight; interest; optimism; patient home care; prospective; psychosocial; response; treatment effect; young adult

DESCRIPTION (provided by applicant): This study examines nasoalveolar molding (NAM), a relatively new and highly controversial, pre-surgical treatment aimed at improving cosmetic and functional outcomes among children with cleft lip and palate (CLP) through early intervention at about one month of age. NAM is intended to reduce the severity of initial cleft deformity through the use of surgical tape, molding plates, and nasal stents. It has polarized professionals in the field of craniofacial habilitation because of the additional demands NAM care places on caregivers (parents) who have infants with CLP. For example, caregivers {(CGs)} are responsible for the daily care of the appliance, positioning of tape, and attending weekly clinic appointments for 3-5 months. Scant data exist, however, on the impact of NAM on family functioning. This research will examine caregivers' decision-making and responses to early cleft care in a prospective, longitudinal, quantitative and qualitative study of primary CGs of children with CLP at {four} renowned craniofacial centers: New York University (NYU), the University of North Carolina- Chapel Hill (UNC), {Oregon Health and Science University (OHSU), and Children's Healthcare of Atlanta (CHOA)}. This study will be the first to compare the stress and family cohesion of two CG groups: (Group 1- {(n~60)} CGs whose infants with CLP have NAM and standard cleft surgery; and Group 2- {(n~60)} CGs whose infants with CLP undergo standard cleft surgery only. Our specific aims are: 1) To assess parental stress and family cohesion among CGs whose infants receive NAM and those CGs whose infants receive traditional cleft care using the Parent Stress Index (PSI) and Family Relationship Index of the Family Environment Scale (FES) and to compare the pattern of changes over time in PSI and FES, within and between the two treatment groups {while controlling for center and potential confounders like CG coping, depression, and optimism}; and 2: To examine subjective responses to treatment-related decision-making and cleft care by conducting semi- structured interviews with CGs whose infants with CLP undergo NAM and CGs whose infants with CLP do not undergo NAM (i.e., traditional cleft care without NAM) and to compare the pattern of responses over time, within and between the two treatment groups. {We will explore the interrelationships among sociodemographic factors (e.g., number of children in the home, infants' birth order, insurance), clinical factors (e.g., extent of defect), caregiver characteristics (e.g., depression, anxiety, optimism) and possible site differences using quantitative and qualitative analyses. Data will be collected at three time points: initial clinic visit; pre-lip surgery; and post- secondary palate surgery. In addition to gaining insight into decision-making, responses to care, and the foundation of quality of life among families having children with cleft, this study may} help to identify potential interventions aimed at enhancing family well-being and health-related quality of life in cleft care. PUBLIC HEALTH RELEVANCE: This study examines nasoalveolar molding (NAM), a relatively new and controversial, pre- surgical treatment aimed at improving cosmetic and functional outcomes among children with cleft lip and palate (CLP) through early intervention at about one month of age. Specifically, this study compares caregiver responses to early cleft care (NAM plus traditional cleft surgery versus traditional surgery). The findings will provide insight into the interrelationships among decision-making regarding medical treatment, caregiver psychosocial characteristics, extent of defect, demographic variables, contextual factors and parental stress.

描述（由申请人提供）：本研究研究了鼻腔肺泡成型（NAM），这是一种相对较新且高度争议的手术前治疗，旨在通过较早一个月的早期干预，唇lip和paple（CLP）的儿童改善化妆品和功能性结果。 NAM旨在通过使用手术胶带，成型板和鼻架来减少初始裂口畸形的严重性。它在颅面生育领域具有两极分化的专业人员，因为NAM护理人员对患有CLP的婴儿的护理人员（父母）有其他要求。例如，护理人员{（CGS）}负责设备的日常护理，磁带的定位以及每周诊所预约3-5个月。但是，数据对NAM对家庭功能的影响很少。这项研究将在一项前瞻性，纵向，定量和定性研究中对护理人员的决策和对早期裂口护理的反应，对{四个}著名的CLP儿童的主要CG研究{nyu），纽约大学（纽约大学（NYU）），北卡罗来纳大学 - 夏洛琳娜大学 - chapel山（UNC），纽约大学（UNC），{of ofegon and Science and anters and and and and and and anters and anters and antal and anters and。 （choa）}。这项研究将是第一个比较两个CG组的压力和家庭凝聚力的：（第1组{（n〜60）} CG，其婴儿患有CLP的婴儿接受了NAM和标准left裂手术；以及2- {（N〜60）} CG组，其婴儿与CLP的婴儿仅接受了标准lefterger手术，以评估我们的特定目标。他的婴儿使用家族压力指数（PSI）和家庭环境量表（FES）的家庭关系指数接受传统的裂口护理，并在两个治疗组之间和之间比较了PSI和FES中随时间的变化模式（同时控制中心和潜在的混杂因素，例如CG COG，抑郁，抑郁和乐观}}；和2：通过对与CGS的CG进行半结构化的访谈，检查与治疗相关的决策和ce裂护理的主观反应，他们的CLP婴儿经历了NAM和CG，他们的CLP婴儿不接受NAM（即没有NAM的传统cleft护理）并在两个治疗组之间进行反应模式。 {我们将探讨社会人口统计学因素（例如，家庭中的儿童，出生顺序，保险），临床因素（例如缺陷程度），护理人员特征（例如，抑郁症，焦虑，乐观）和可能使用定量和合理分析的可能地点差异。数据将在三个时间点收集：初步诊所访问；唇部手术；和次生后手术。除了深入了解决策，对护理的反应以及患有left儿童的家庭的生活质量之外，这项研究可能有助于确定旨在增强家庭福祉和与健康相关的生活质量的潜在干预措施。 公共卫生相关性：这项研究检查了鼻腔肺泡成型（NAM），这是一种相对较新的，有争议的，手术的治疗，旨在通过大约一个月的早期干预，改善唇裂和口感（CLP）儿童的化妆品和功能结果。具体而言，这项研究比较了护理人员对早期裂口护理的反应（NAM以及传统的裂口手术与传统手术）。这些发现将提供有关医疗治疗，照料者的心理社会特征，缺陷程度，人口统计学变量，情境因素和父母压力的决策之间相互关系的见解。