Project Description

Project Description: This research is being done to develop a new questionnaire about how families manage caring for a child or adolescent with a chronic condition. The new questionnaire is needed because there is not one that currently exists that specifically identifies the different ways families cope with a child with a chronic condition. Such a questionnaire will help health care providers understand family management styles, and it will help them provide individualized care to families who have a child with a chronic condition. This study is sponsored by the National Institutes of Health and the schools of nursing at Yale University, University of Pennsylvania, and the University of Illinois at Chicago.

For more information about this study, please call 1-800-598-9979 or send an email to familysurvey@yale.edu.

Abstract

Recent estimates indicate that approximately 15% 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 is ongoing. The current proposal 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.

Study results

Thank you to the 454 parents that have participated in the study to date. Our current participants come from 18 states, including:

• Connecticut
• Delaware
• Florida
• Georgia
• Illinois
• Indiana
• Maryland
• Maine
• Michigan
• North Carolina
• New Hampshire
• New Jersey
• New York
• Pennsylvania
• Rhode Island
• Virginia
• Vermont
• Washington

As results become available they will be posted on this webpage. If you have any questions about the study, please feel free to call 1-800-598-9979.

Analysis

The Relationship of Child and Family Functioning to Adaptation in Childhood Chronic Conditions