Applying the ICF framework to study changes in quality-of-life for youth with chronic conditions

Abstract

Objective The objective of this paper is to describe how the ICF framework was applied as the foundation for a longitudinal study of changes in quality-of-life (QoL) for youth with chronic conditions. Method This article will describe the study’s aims, methods, measures and data analysis techniques. It will point out how the ICF framework was used—and expanded upon—to provide a model for studying the impact of factors on changes in QoL for youth with chronic conditions. Further, it will describe the instruments that were chosen to measure the components of the ICF framework and the data analysis techniques that will be used to examine the impact of factors on changes in youths’ QoL. Conclusions Qualitative and longitudinal designs for studying QoL based on the ICF framework can be useful for unraveling the complex ongoing inter-relationships among functioning, contextual factors and individuals’ perceptions of their QoL.

Maternal factors and the emotional and behavioural functioning of adolescents with chronic health conditions

“…This research used parent report longitudinal data from an ongoing study of QOL among adolescents with chronic conditions (see McDougall and colleagues [39] for greater detail). At the time of writing this paper, only baseline data and Time 2 data collection (12 months later) had been completed and investigators were continuing to collect data for the additional time points.…”

“…Adolescents aged 11 to 17 years with a chronic condition and one of their parents (most often their mothers) completed questionnaires at baseline and 12 months later regarding youths' QOL and related factors. Questions ranged from basic demographic information to youths' educational functioning, family functioning, emotional and behavioural difficulties, and life satisfaction (see McDougall and colleagues [39,40]). …”

“…Fathers and those caregivers who were not biological mothers were dropped (n ¼ 76) as they were not relevant to the goals of the current analysis. The study employed a noncategorical approach to illness, wherein adolescents with chronic conditions were combined into a total group for the purpose of the research questions and data analysis [39]. This approach was taken because of evidence of similar psychological, psychosocial and social implications across apparently distinct chronic conditions [41][42][43].…”

The Child and Adolescent Scale of Environment (CASE): Further validation with youth who have chronic conditions

“…Baseline data were examined from an ongoing longitudinal prospective cohort study examining predictors of changes in quality of life for youth with chronic conditions [15,16]. Data were collected on a random sample of 430 Canadian youth aged 11-17 with various chronic conditions.…”

“…Only data collected from the parent report measures were examined in this study. The parent questionnaire that included the CASE, CASP and CAFI was self-completed (30-60 minutes), most often by the youth's mother, in a separate room from the youth [15,16]. These three measures (described next) were initially developed as part of the Child and Family Follow-up Survey (CFFS), a parent-report measure used to monitor outcomes and needs of children with traumatic and other acquired brain injuries (TBI/ABI) and their families [12-14, 17, 18] and subsequently have been used to assess children with other conditions and disabilities [12,15,19].…”