Three-year trajectories of global perceived quality of life for youth with chronic health conditions

Abstract

PurposeObjectives of this longitudinal study were to examine 3-year trajectories of global perceived quality of life (QOL) for youth with chronic health conditions, as obtained from youth and parent reports, and to identify personal and environmental factors associated with the trajectory groups for each perspective.MethodsYouth with various chronic conditions aged 11–17 years and one of their parents were recruited from eight children’s treatment centers. Latent class growth analysis was used to investigate perceived QOL trajectories (separately for youth and parent perspectives) over a 3-year period (four data collection time points spaced 12 months apart). Multinomial logistic regression was employed to identify factors associated with these trajectories.ResultsA total of 439 youth and one of their parents participated at baseline, and 302 (69 %) of those youth/parent dyads completed all four data collection time points. Two QOL trajectories were identified for the youth analysis: ‘high and stable’ (85.7 %) and ‘moderate/low and stable’ (14.3 %), while three trajectories were found for the parent analysis: ‘high and stable’ (35.7 %), ‘moderate and stable’ (46.6 %), and ‘moderate/low and stable’ (17.7 %). Relative to the ‘high and stable’ groups, youth with more reported pain/other physical symptoms, emotional symptoms, and home/community barriers were more likely to be in the ‘moderate and stable’ or ‘moderate/low and stable’ groups. Also, youth with higher reported self-determination, spirituality, family social support, family functioning, school productivity/engagement, and school belongingness/safety were less likely to be in the ‘moderate and stable’ or ‘moderate/low and stable’ groups, compared to the ‘high and stable’ groups.ConclusionFindings suggest that youth with chronic conditions experience stable global perceived QOL across time, but that some individuals maintain stability at moderate to moderate/low levels which is related to ongoing personal and environmental influences. Potential benefits of universal strategies and programs to safeguard resilience for all youth and targeted interventions to optimize certain youths’ global perceived QOL are indicated.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-016-1353-z) contains supplementary material, which is available to authorized users.

Determinants of change in home participation among critically ill children

“…28,31 Study results are congruent with recent cross-sectional studies that emphasize the relative impact of functional abilities and capabilities, as well as environmental qualities, on the child's involvement in home-based activities. Specifically, significant effects of functional capabilities and environmental support on children's involvement in meaningful daily life activities suggest the importance of targeting these areas during rehabilitation with this population.…”

“…Specifically, significant effects of functional capabilities and environmental support on children's involvement in meaningful daily life activities suggest the importance of targeting these areas during rehabilitation with this population. 28,31 Study results are congruent with recent cross-sectional studies that emphasize the relative impact of functional abilities and capabilities, as well as environmental qualities, on the child's involvement in home-based activities. 16,17 Clinically, these findings suggest multiple potential candidate targets for rehabilitation interventions with this population, namely environmental supports, or compensatory strategies, and functional abilities.…”

“…For this reason, children's participation in activities warrants clinical attention as a key indicator of their functioning and rehabilitation need. 31 To our knowledge, this is the first study to apply the full ICF-CY framework to examine the trajectories of participation in home-based activities for the first 6 months after discharge from the PICU. A few studies using large samples have employed ICF-CY components to understand changes in children's participation and quality of life after acquired brain injury 28 and when living with developmental disabilities 29,30 or chronic health conditions.…”

“…A few studies using large samples have employed ICF-CY components to understand changes in children's participation and quality of life after acquired brain injury 28 and when living with developmental disabilities 29,30 or chronic health conditions. 31 To our knowledge, this is the first study to apply the full ICF-CY framework to examine the trajectories of participation in home-based activities for the first 6 months after discharge from the PICU. Study results partly support study hypotheses, mainly that there was no significant change in participation but supporting evidence for the impact of children's functional capabilities and environment on participation outcomes.…”

Handbook of Positive Psychology, Religion, and Spirituality

“…Highlighting the importance of cultural context, spirituality-but not religious service attendance-was associated with higher subsequent LS within a sample of adolescents in Portugal . In addition, research from Canada has shown that youth with higher levels of spirituality are more likely to experience trajectories of high and stable LS than trajectories of moderate or low LS (McDougall et al, 2016). Interestingly, research in Hong Kong has found that adolescents who are higher in spirituality tend to experience sharper declines in LS than less spiritual adolescents (Shek & Liang, 2018).…”