Assessing Family Management of Childhood Chronic Illness

描述(由申请人提供)：最近的估计表明，在所有出生到18岁之间的儿童中，约有15%有一种或多种慢性健康损害。一系列独特的优势和局限性决定了每个家庭的疾病管理努力，如果要支持最佳的个人和家庭功能，就必须进行个性化的护理干预。要了解儿童慢性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，尽管有完善的工具来衡量一般的家庭进程和功能，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一工具。具体目标是：(1)完整开发家庭管理风格调查(FMSS)的条目；(2)通过专家家庭护理研究人员、临床医生和慢性病儿童家长的输入，评估FMSS的内容效度；(3)通过现场测试确定FMSS的心理测量学特性，以评估其潜在的因素结构、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，并作为产生97个项目的基础。正在努力评估这些项目的内容有效性。目前的申请寻求资金以完成该文书的开发。将完成对30-45名慢性病儿童父母的大声思考访谈，以进一步评估FMSS的内容效度。现场测试将需要对700名父母进行电话采访，以评估该工具的心理测量特性。样本将包括单亲和双亲家庭以及不同的人口统计和疾病特征。在电话采访中，父母将完成FMSS和其他儿童和家庭功能的测量。这项研究结合了两种创新的工具开发方法(大声思考访谈和G-Study)以及用于评估信度和效度的既定方法。通过提供家庭对儿童慢性病反应模式的有效、可靠的衡量标准，FMSS将促进我们产生关于疾病家庭背景的知识的能力，以及我们制定满足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.