Psychosocial Functioning in Caregivers of Children with Sickle Cell Disease

镰状细胞病儿童照顾者的心理社会功能

• 批准号: 7890637
• 负责人: Josie S Welkom
• 金额: $ 3.09万
• 依托单位: GEORGIA STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-06-22 至 2011-06-21
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7890637
• 关键词: 18 year old; Absence of pain sensation; Absenteeism at work; Affect; African; African American; Appointment; Attention; Behavior; Biofeedback; Blood Transfusion; Caregivers; Caring; Child; Child Care; Child Psychology; Childhood; Chronic Disease; Chronically Ill; Coping Skills; Diabetes Mellitus; Diagnosis; Disease; Educational process of instructing; Enrollment; Family; Frequencies; Functional disorder; Future; Heart; Hereditary Disease; Hydration status; Intervention; Knowledge; Lead; Learning; Life; Literature; Lung; Malignant Neoplasms; Measures; Medical; Mental Health; National Heart, Lung, and Blood Institute; Newborn Infant; Outcome; Pain; Parenting behavior; Parents; Pattern; Physicians; Population; Psychological adjustment; Psychologist; Psychosocial Factor; Relaxation Techniques; Research; Research Methodology; Self Management; Sickle Cell Anemia; Sorting - Cell Movement; Stress; Stress and Coping; Symptoms; System; Target Populations; Time; Training; United States; Wood material; base; career; coping; experience; improved; interest; novel; nutrition; programs; psychologic; psychosocial; psychosocial adjustment; public health relevance; skills; skills training; stressor; vaso-occlusive pain

DESCRIPTION (provided by applicant): Sickle Cell Disease (SCD) is a genetic disorder that affects approximately 1 of every 600 African American newborns in the United States (National Heart, Lung, and Blood Institute [NHLBI], 2006). Research suggests that the effects of raising a child with a chronic illness can lead to significant psychological maladjustment and family system dysfunctions (Wallander & Varni, 1998).Unfortunately, there is minimal research examining the stress and coping of caregivers of children with SCD. It is important to examine the functioning of these caregivers because raising a chronically ill child has been shown to lead to an increase in parenting stress, which has been found to lead to poor parental mental health outcomes (Kovacs, 1985), decreased ability to learn illness-related management skills (Gillis, 1993), increased stress in the ill child (Melamed & Ridley-Johnson, 1988), and a negative influence on child self-management (Auslander, Thompson, Dreitzer, & Santiago, 1997; Hanson, DeGuire, Schnikel, & Kolterman, 1995). Given the stressors associated with raising a child with SCD, it is important to examine the ability of the caregivers to employ effective coping strategies, which are essential to healthy parental psychosocial adjustment. Racial identity, which has been thoroughly researched as a critical aspect in the lives of African Americans, has received only minimal attention in the pediatric psychology literature. With SCD affecting primarily people of African descent, it is important to explore the concept of racial identity in this population. The purpose of this current study is to investigate the relation between stress and psychosocial adjustment and the potential moderating effects of coping in caregivers of children with SCD. The relations among racial identity, stress, coping, and psychosocial functioning will be evaluated as a secondary aim. One hundred caregivers of 8- to 18-year-old children diagnosed with SCD will be enrolled. Caregivers will complete measures of psychosocial functioning, stress, coping, and racial identity. The results of this study will build upon previous research regarding stress and coping within an SCD population in addition to providing novel information regarding the effects of racial identity. Because of the paucity of research with caregivers of children with SCD, few interventions targeting this population exist. PUBLIC HEALTH RELEVANCE: This study will provide valuable information about stress, coping, and adjustment in caregivers of children with SCD, leading to theoretically derived and culturally sensitive interventions for children and their caregivers.

描述（由申请人提供）：镰状细胞疾病（SCD）是一种遗传疾病，影响了美国每600名非裔美国人新生儿中约有1个（国家心脏，肺和血液研究所[NHLBI]，2006年）。研究表明，抚养患有慢性疾病的儿童的影响会导致严重的心理疾病和家庭系统功能障碍（Wallander＆Varni，1998）。不幸的是，研究了SCD儿童的护理人员的压力和应对。 It is important to examine the functioning of these caregivers because raising a chronically ill child has been shown to lead to an increase in parenting stress, which has been found to lead to poor parental mental health outcomes (Kovacs, 1985), decreased ability to learn illness-related management skills (Gillis, 1993), increased stress in the ill child (Melamed & Ridley-Johnson, 1988), and a negative influence on child self-management (Auslander,汤普森（Thompson），德雷泽（Dreitzer）和圣地亚哥（Santiago），1997年；考虑到与养育SCD有关的压力源，重要的是要检查护理人员采用有效应对策略的能力，这对于健康的父母心理社会调整至关重要。种族认同是在非洲裔美国人生活中被彻底研究为关键方面的种族认同，在小儿心理学文献中仅受到最少的关注。随着SCD主要影响非洲血统的人，探索该人群中种族认同的概念很重要。这项当前研究的目的是研究压力与社会心理调整之间的关系，以及在SCD儿童的护理人员中应对的潜在调节作用。种族认同，压力，应对和社会心理功能之间的关系将被评估为次要目标。将招募8至18岁儿童的100名护理人员。护理人员将完成心理社会功能，压力，应对和种族认同的措施。这项研究的结果将基于先前关于SCD人群中压力和应对的研究，除了提供有关种族认同影响的新信息。由于与SCD儿童的护理人员的研究很少，因此很少有针对该人群的干预措施。公共卫生相关性：这项研究将为患有SCD儿童的护理人员提供有关压力，应对和调整的宝贵信息，从而为儿童及其护理人员提供理论上派生和文化敏感的干预措施。