Assessing Family Management of Childhood Chronic Illness

描述（由申请人提供）：最近的估计表明，在所有出生至18岁的儿童中，约有15%患有一种或多种慢性健康障碍。一个独特的优势和限制阵列决定了每个家庭的疾病管理工作，如果要支持最佳的个人和家庭功能，就需要个性化的护理干预。要了解儿童慢性疾病背景下的家庭生活，有必要了解疾病和治疗方案是如何融入家庭生活的。然而，尽管存在完善的工具来衡量一般家庭过程和功能，但没有评估家庭疾病管理和将疾病纳入家庭生活的措施。本研究的目的是开发和评估这样一个工具。具体目标是：(1)完成家庭管理风格调查（FMSS）项目的开发；(2)通过专家家庭护理研究者、临床医生和慢性疾病儿童家长的输入来评估FMSS的内容效度；(3)通过实地测试来评估FMSS的心理测量特性，以评估其潜在因素结构、信度、类型分组和结构效度。关于拟议文书的概念基础的大量工作已经完成，并成为产生97个项目的基础。评估这些项目内容有效性的工作正在进行中。目前的申请是寻求资金来完成仪器的开发。对30-45名慢性疾病儿童家长进行“大声思考”访谈，进一步评估FMSS的内容效度。实地测试将需要对700名家长进行电话访谈，以评估该仪器的心理测量特性。样本将包括单亲和双亲家庭以及人口统计学和疾病特征的多样性。在电话访谈中，家长将完成FMSS和其他关于儿童和家庭功能的措施。该研究结合了两种创新的工具开发方法（大声思考访谈和g研究）以及评估可靠性和有效性的既定方法。通过提供家庭对儿童慢性疾病反应模式的有效可靠测量，FMSS将进一步提高我们对家庭疾病背景的认识，以及我们制定针对家庭独特和不同需求的干预措施的能力。

DESCRIPTION (provided by applicant): Recent estimates indicate that approximately 15 percent of all children between birth and 18 years of age have one or more chronic health impairments. A unique array of strengths and limitations shapes each family's illness management efforts and necessitates individualized nursing interventions if optimal individual and family functioning is to be supported. To understand family life in the in the context of childhood chronic illness it is necessary to understand how the illness and treatment regimen are incorporated into family life. However, despite the existence of well-established instruments to measure general family processes and functioning, no measures exist that assess family illness management and incorporation of the illness into family life. The purpose of this study is to develop and evaluate such an instrument. Specific aims are: (1) complete development of items for the Family Management Style Survey (FMSS), (2) evaluate the content validity of the FMSS through input from expert family nurse researchers, clinicians and parents of children with chronic illness, and (3) determine the psychometric properties of the FMSS through a field test to assess its underlying factor structure, reliability, typological groupings, and construct validity. Considerable work on the conceptual underpinnings of the proposed instrument has been completed and served as the basis for generating a pool of 97 items. Efforts to evaluate the content validity of these items are ongoing. The current application seeks funding to complete the development of the instrument. Think aloud interviews with 30-45 parents of children with chronic illness will be completed to further assess the content validity of the FMSS. Field-testing will entail telephone interviews with a sample of 700 parents in order to assess the instrument's psychometric properties. The sample will be recruited to include single and two parent families and a diversity of demographic and illness characteristics. During telephone interviews, parents will complete the FMSS and other measures of child and family functioning. The study combines two innovative approaches to instrument development (think aloud interviews and G-study) with established approaches for assessing reliability and validity. By providing a valid reliable measure of patterns of family response to childhood chronic illness, the FMSS will further our ability to generate knowledge of the family context of illness as well as our ability to develop interventions that address the unique and varying needs of families.