Development of two instruments examining stress and adjustment in children with cancer

The childhood cancer literature provides limited understanding of the school-age child's perception of cancer stressors and factors that contribute to adjustment in the midst of these stressors. This study evaluated the reliability and validity of two questionnaires: the Childhood Cancer Stressors Inventory (CCSI) and the Children's Adjustment to Cancer Index (CACI). The following steps were involved in the instrument development process: item development, face and content validation, internal consistency reliability, and construct validity. Questions for both instruments were developed from the literature and experience of the principal investigator. A panel of five expert pediatric oncology nurses was asked to evaluate the content validity of both instruments. All the experts rated every item a 4-5 using the content validity index, indicating that each item measured the concept addressed by the scale. Seventy-five children with cancer were asked to complete the two questionnaires and parents completed a demographic data sheet that included eight questions about the child's school attendance, performance, number of friends, and activities. Children were 7 to 13 years of age; 64% were diagnosed with a leukemia/ lymphoma, and 36% had a solid tumor. Internal coefficient reliability for the total CCSI was .82, and .91 for the CACI. The CCSI correlated negatively with the adjustment scale (r = -.63, P = 000). The number of days missed from school correlated positively with the CCSI and negatively with the CACI. Children who missed more school perceived more cancer stressors and had a lower adjustment rating. Children with lower adjustment ratings on the CACI also had fewer friends (t = 3.4(72), P = .001). Scores on both instruments demonstrated expected relationships with measures hypothesized to covary with the dimensions assessed by the new instruments. Adjustment issues for children with cancer have been difficult to assess because of the lack of appropriate instruments. These study findings indicate that the two new instruments can help to measure the child's perceptions of the cancer experience.