Family Support of Older Caregivers: Factors Influencing Change in Quality of Life.

Understanding factors that can improve the quality of life (QOL) of older caregivers of people with intellectual and developmental disabilities (IDD) is important in broadening participation in family empowerment interventions. The purpose of this study was to identify the factors influencing the QOL of older caregivers (50+) of adults with IDD who participated in a peer-mediated state-wide family support project. The research study used a quasi-experimental research design grounded in the family quality of life (FQOL) framework, with pretest and posttest data gathered from 82 caregivers. Correlation and regression analyses were conducted to identify factors influencing changes in the QOL of study participants. Findings indicated that improvements in caregiver QOL after participating in the project could be explained by caregiver's employment status, increased global FQOL, and decreased caregiver stress and depression.

Electronic Version of the Family Quality of Life Survey (eFQOLS): Reliability and Validity for Families of Individuals With Disabilities and Chronic Health Conditions.

This study tested the psychometric properties of an electronic Family Quality of Life Survey (eFQOLS) when used with families of individuals with disabilities and/or chronic health conditions. Data gathered from 272 family caregivers using the eFQOLS were subjected to reliability analysis, correlation analysis, and confirmatory factor analysis to test the internal consistency of the scales, as well as criterion and construct validity of the internal structure of the scale. Testing factor structures of the item-level domain models indicated that initiative and stability had low factor loadings in many domains. As a result, these items were deleted from the subscales. The subscale-level FQOL factor structure demonstrated a good fit after two adjustments. The internal consistency of the 27-item total FQOL scale was excellent (α = .93), while that of the subscales ranged from moderate to strong (α = .69 to .90). The eFQOLS had a moderate degree of construct validity, good criterion validity, and reliability when used with diverse families across the lifespan. Additional research is needed to continue refining the survey with a more heterogenous sample.

Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden.

BACKGROUND: Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden. METHODS: Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental). RESULTS: Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges. CONCLUSIONS: Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.

Use of computer access technology as an alternative to writing for a pre-school child with athetoid cerebral palsy--a case report.

The purpose of this study was to demonstrate the use of an outcome-driven model of decision-making in the implementation of computer access technology (CAT) for a pre-school child with athetoid cerebral palsy. The child did not have the fine motor skills required to hold a pencil but had the cognitive abilities to learn to write; therefore, we explored the use of a CAT device to enable written communication. Case study methodology was used to describe the selection process, child-level outcomes, and clinical challenges faced by the therapist in the use of a consortium model that was designed for an outcome-driven model of decision-making. The critical role of an occupational therapist in this process using a family-centered approach is discussed.