Measuring self‐care independence in children with cystic fibrosis: The self‐care independence scale (SCIS)

Abstract

We describe the development and psychometric properties of a survey tool designed to evaluate children's level of independence in their cystic fibrosis (CF) treatment. Children's self-care autonomy is important to measure and may have a direct effect on children's active involvement in their treatment and their adherence. Existing instruments that evaluate children's independence in their CF treatment fail to yield practical information that can help research and patient management. The Self-Care Independence Scale (SCIS) is a 44-item questionnaire that is completed by parents. The SCIS was completed by the parents of 76 patients with CF (ages 4-17 years). Youths completed two structured interviews, which screened patients for average or higher cognitive functioning (an inclusion criterion) and measured their CF treatment knowledge. Parents completed two other self-report questionnaires. Results indicated that the SCIS has acceptable internal consistency and good test-retest reliability. The construct validity of the SCIS was supported by positive correlations between patient age, number of years since diagnosis, and SCIS total scores. The concurrent validity of the SCIS was supported by correlations between a measure of nonillness-specific dependence and a measure of patient self-care knowledge. Children's SCIS total scores per age group are presented. This study supports the SCIS as a psychometrically sound measure of self-care independence in CF. This measure has several uses. For example, the SCIS may be a screening tool for adolescents who are preparing to transition to adult CF centers and who will need to assume more independence in their self-care. The SCIS may also be used to evaluate educational programs that promote self-care knowledge and skill in children with CF.

Self-efficacy in adolescents with inflammatory bowel disease: A pilot study of the “IBD-yourself”, a disease-specific questionnaire

“…Other studies on self-efficacy in children with chronic diseases have yielded conflicting results on the effect of age on self-efficacy. Older children with cystic fibrosis and asthma reported higher levels of self-efficacy and self-care management compared with younger children, 24,27 whereas age had no effect on selfefficacy scores of adolescent sickle cell disease patients. 25 The results of the parental questionnaire suggest that parents may not always accurately assess the level of selfefficacy of their child.…”

“…22 Questionnaires on self-efficacy or self-care management in adolescents with other chronic diseases, such as diabetes, sickle cell disease, and cystic fibrosis, did not demonstrate any gender differences. [23][24][25] In contrast, a review on the social psychology of self-efficacy reported on a greater sense of self-efficacy in boys. 26 Educational level is generally thought to be positively related to self-efficacy, 26 but this effect was only demonstrated for two domains in our study.…”

Transition of children with inflammatory bowel disease: Big task, little evidence

“…Based on age, two different intellectual screening tools were used. There was a positive correlation between SCIS scores, patient's age and the number of years since diagnosis [17] . A similar study with a larger sample size was conducted among patients with diabetes not only for children but also for parents assessing independence of their children [18] .…”

Smoothing the transition from pediatric to adult care: lessons learned

“…Instruments to measure readiness have been developed [17] but these should be used primarily as a guide for patients, parents, and the CF team on what should be accomplished by the date of transfer. As suggested earlier by Rosen, the patients look forward to their eventual transfer [7].…”