Utility of the PedsQL™ family impact module: assessing the psychometric properties in a community sample.

PURPOSE: Research on families coping with pediatric chronic illnesses has established that children and parents are affected by the illness. Therefore, optimal assessment of parent and family functioning is clinically important. The PedsQL™ family impact module (FIM) assesses parents' health-related quality of life (HRQOL) and family functioning. While the FIM has been shown to be reliable and valid in multiple chronic illness groups, there is little data on its use in non-clinical groups. The study's objective was to assess the reliability, validity, and factor structure of the FIM in a community sample. METHODS: Nine hundred and twenty-nine community parents of children 2-17 years old completed an anonymous online survey. The mean age of the participants was 37.6 years (SD = 8.6), and the majority were mothers (63.6 %), white (82.9 %), and married (74.8 %). The mean age of the children being reported on was 8.8 years (SD = 3.9), and the majority were female (52.3 %) and 41.2 % were reported as having at least one chronic condition. RESULTS: All of the FIM's scales demonstrated excellent internal consistency reliability. Confirmatory factor analysis of the measure supported the current structure. The measure correlated in the expected direction with validated measures of anxiety, depression, child HRQOL, and number of chronic conditions endorsed. Independent t tests indicated that the measure has discriminant validity between parents who reported having a child with a chronic condition to those who did not. CONCLUSION: The results of this study suggest the FIM is a reliable and valid measure of parent HRQOL and family functioning within a community sample, and facilitate its use in comparative studies.

Parent perceptions of nutritional issues during their child's treatment for cancer.

To examine family mealtime interactions, parental concerns about nutrition, and body mass index (BMI) among children with cancer who did not have primary central nervous system involvement. Parents of 95 children receiving treatment for cancer and 95 comparisons completed the About Your Child's Eating-Revised (AYCE-R) measure. Anthropometric data for children with cancer were obtained from medical charts at diagnosis and again when the AYCE-R was administered. No differences in mealtime interactions were found between children with cancer and comparisons, but parents of children with cancer reported greater concern about their child's weight. Anthropometric measures for children with cancer were consistent with national norms. However, children with cancer were somewhat underweight at diagnosis and became heavier over time. Lower BMI was associated with mother and father report of greater resistance from the child at mealtime, father report of his own aversion to family meals, and more severe treatment. The impact of cancer on family mealtime interactions and BMI appeared minimal during treatment. However, further longitudinal research is needed given the risk for late effects, such as growth problems and obesity, among cancer survivors. Families also may benefit from ongoing education to optimize healthy lifestyles among survivors.

Cystic fibrosis disclosure may minimize risk of negative peer evaluations.

BACKGROUND: Given the relatively lower body weight associated with cystic fibrosis (CF) and the visible regimen associated with eating, there is a risk that individuals with CF may be mistakenly perceived to have an eating disorder or otherwise be negatively evaluated. Based upon a theoretical model, this study explored whether disclosing CF would curtail negative peer perceptions. METHODS: Young adult respondents (N = 391) read vignettes that varied in a 2 (male vs. female character) x 2 (preventative disclosure of disorder vs. nondisclosure) design and answered 28 questions, which resulted in three subscales that were validated using confirmatory factor analysis: Abnormal Behavior, Hiding an Eating Disorder, and Worry. Vignettes depicted a lunchtime interaction including concerns about gaining weight and taking enzymes before eating. RESULTS: Disclosure of CF significantly reduced perceptions of abnormal behavior, ameliorated perceptions of an eating disorder, and alleviated respondents' worries. Manipulations of vignette character gender did not result in any significant differences; however, female respondents reported significantly more worry for the character than males. CONCLUSIONS: Individuals who disclose their CF may potentially curtail negative peer perceptions. Those who choose not to disclose may risk having their thinness and appropriate self-care misperceived as signs of an eating disorder.