Longitudinal Study of Parents’ Impact on Quality of Life of Children and Young Adults with Intellectual Disabilities

Abstract

Our study revealed that predictors of QoL in children and young adults with ID occurred in the following domains: physical well-being (children), social well-being (parents and children) and emotional well-being (parents and children).

Child-related characteristics predicting subsequent health-related quality of life in 8- to 14-year-old children with and without cerebellar tumors: a prospective longitudinal study

“…9,12,14,18,20 Other previous studies have reported discrepant findings that may be attributable to heterogeneity with respect to participant age, tumor location, and interval from diagnosis or attrition bias. 2,11,41,42 The importance to HRQoL of neurological deficit, the functional consequences of which were captured in the motor and sensory function domain, was reflected in the predictive role of that domain by parent-report.…”

“…19,20 The present study describes the level and trajectory of HRQoL scores in children diagnosed with low-grade cerebellar astrocytoma or medulloblastoma (the 2 most common types of posterior fossa tumor) who are old enough to report their own HRQoL reliably. The former is usually treated with surgery alone, with 7-year survival as high as 100% in some reports, 21 while the latter requires adjuvant treatment with chemotherapy and radiotherapy.…”

Social networks of people with mild intellectual disabilities: characteristics, satisfaction, wishes and quality of life

“…The internal consistency of the IDQOL-16 in previous studies has been found to vary from 0.85 for adults with ID (Hoekman et al 2001) to 0.83/0.84 for proxies of children with ID (Cram & Nieboer 2012) and 0.74 for adults over 50 years of age with moderate to mild ID (van Puyenbroeck & Maes 2009). This was done in order to facilitate comprehension but also establish some uniformity across the measurement instruments.…”

“…Also an association of life satisfaction/subjective QOL with perceived social support has been found (Lunsky & Benson 2001;Bramston et al 2005;Miller & Chan 2008). Emerson & Hatton 2008;Cram & Nieboer 2012). Emerson & Hatton 2008;Cram & Nieboer 2012).…”

Validation of an instrument to assess the delivery of patient-centred care to people with intellectual disabilities as perceived by professionals

“…Formal caregivers can provide support to the disabled family member, which alleviates some of the burden on family and friends [25]. Moreover, the well-being of parents seems to have a direct effect on the well-being of their disabled child, so investing in the well-being of a disabled person’s family and friends is also beneficial for the well-being of PWIDs [26]. Therefore, it is important to train family and friends on how to deal with the behavioural problems of a disabled person and how to cope with negative consequences in their own lives (e.g., reduced physical and social activities) [27].…”