The purpose of the proposed research is to continue development of an Illness Beliefs Questionnaire (IBQ) as a tool to facilitate family centered assessment and treatment of chronic pediatric illness. There is growing need for measures that assess family based explanatory models of illness;because current measures do not ask respondents to reflect on the beliefs of others, they cannot help the family or provider identify the shared belief system that is influencing care. While providing family systems treatment for youth with medical illness, we began developing a family centered IBQ that asked parents to reflect on critical illness belief domains relevant across many illnesses. Parents were also asked to reflect on the beliefs of other family members.] In pilot- testing with 89 parents of children receiving treatment in our setting, the IBQ showed promise with respect to psychometric properties and sensitivity to change with treatment. We now have the goal of systematically developing the IBQ to enhance its reliability, validity, and applicability for use in family centered care. Long-term, systematic development of a family centered IBQ is aimed at creating a measure that is: 1) reliable and valid;2) applicable to a wide variety of chronic pediatric illnesses at varying levels of severity;3) easy to administer in clinical settings;4) sensitive to change;and, ultimately 5) appropriate for multiple informants and people of different racial and ethnic groups. [As such, the IBQ would have broad appeal to providers of family centered care. By elucidating discrepancies in illness beliefs, the IBQ could help identify families at risk for poor adaptation to illness and guide intervention discussions and decisions.] Because it is not disease specific, the IBQ could also be integrated into various chronic pediatric illness registries that, in addition to gathering medical data, seek to elicit and monitor families'beliefs about and experiences of chronic pediatric illness. To begin working on these goals, the research proposed in this application focuses on developing an English version family centered IBQ. We will recruit 500 English-speaking mothers of children (aged 6-18 years) with a chronic pediatric illness. [In addition, we will recruit smaller samples of English-speaking fathers and youth themselves]. We will recruit families of different racial and ethnic backgrounds and apply tests of differential item function;thus, results will guide us in future research to develop culturally-appropriate versions of the IBQ. First, [50] mothers [and 10 fathers] will complete our 79-item IBQ and cognitive interviews designed to garner feedback on the meaning of IBQ items as well as question and response formats. Based on these interviews, we will revise the item pool. Next, [450] mothers [as well as 50 fathers and 50 youth] will complete the revised IBQ. Data will be used to evaluate IBQ item and scale functioning across different illness, illness severity, [age], racial/ethnic subgroups [and informants]. We will evaluate IBQ factor structure, internal consistency, test-retest reliability;construct validity, and ability to detect treatment-related changes in beliefs.

Public Health Relevance

The goal of this research is to develop an Illness Beliefs Questionnaire (IBQ) to measure family beliefs about chronic childhood illness. Family beliefs about chronic childhood illness (for example, whether family members believe they can control the illness) likely influence what families do to manage illness, but there are few, if any, instruments to measure such beliefs. Because family treatments are often used to improve adjustment to chronic childhood illness, knowing family illness beliefs is important. Development of an IBQ will involve 1) families giving us feedback on the meaning of questions;2) determining whether the IBQ is reliable (for example, do people give similar responses if they complete the measure twice);3) determining how strongly IBQ scores are related to scores on measures of behavioral adjustment to illness;and 4) determining how much IBQ scores change when families receive treatment focused on changing family beliefs about illness. We anticipate that this research will result in developing a reliable and valid IBQ that can be used in a wide variety of clinical settings to identify families that may be at risk for poor adaptation to chronic childhood illness and to monitor changes in illness beliefs among families who receive family-centered care.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Small Research Grants (R03)
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Pediatrics Subcommittee (CHHD)
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Jenkins, Tammara L
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Rhode Island Hospital
United States
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