16 research outputs found

    Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

    Get PDF
    Background: Although research in this area remains sparse, raising a child with some genetic disorders has been shown to adversely impact maternal health and family quality of life. The aim of this study was to investigate such impacts in families with a child with the CDKL5 disorder, a newly recognised genetic disorder causing severe neurodevelopmental impairments and refractory epilepsy. Methods: Data were sourced from the International CDKL5 Disorder Database to which 192 families with a child with a pathogenic CDKL5 mutation had provided data by January 2016. The Short Form 12 Health Survey Version 2, yielding a Physical Component Summary and a Mental Component Summary score, was used to measure primary caregiver's wellbeing. The Beach Center Family Quality of Life Scale was used to measure family quality of life. Linear regression analyses were used to investigate relationships between child and family factors and the various subscale scores. Results: The median (range) age of the primary caregivers was 37.0 (24.6-63.7) years and of the children was 5.2 (0.2-34.1) years. The mean (SD) physical and mental component scores were 53.7 (8.6) and 41.9 (11.6), respectively. In mothers aged 25-54 years the mean mental but not the physical component score was lower than population norms. After covariate adjustment, caregivers with a tube-fed child had lower mean physical but higher mean mental component scores than those whose child fed orally (coefficient = -4.80 and 6.79; p = 0.009 and 0.012, respectively). Child sleep disturbances and financial hardship were negatively associated with the mental component score. The mean (SD) Beach Center Family Quality of Life score was 4.06 (0.66) and those who had used respite services had lower scores than those who had not across the subscales. Conclusions: Emotional wellbeing was considerably impaired in this caregiver population, and was particularly associated with increased severity of child sleep problems and family financial difficulties. Family quality of life was generally rated lowest in those using respite care extensively, suggesting that these families may be more burdened by daily caregiving

    CollageMachine

    No full text

    Early and Repeated Exposure to Examples Improves Creative Work

    No full text
    This article presents the results of an online creativity experiment (N = 81) that examines the effect of example timing on creative output. In the between-subjects experiment, participants drew animals to inhabit an alien Earth-like planet while being exposed to examples early, late, or repeatedly during the experiment. We find that exposure to examples increases conformity. Early exposure to examples improves creativity (measured by the number of common and novel features in drawings, and subjective ratings by independent raters). Repeated exposure to examples interspersed with prototyping leads to even better results. However, late exposure to examples increases conformity, but does not improve creativity. (a) “alien drone... ” (b) “balances on its circular appendages...
    corecore