Background: Significant advances in the treatment of Cystic Fibrosis (CF) have extended life expectancy, increasing the number of CF caregivers who deliver demanding daily treatment regimens and manage uncertainty. With the impact these changes have on CF caregivers, it is critical to understand CF caregiver quality of life (QoL). Purpose: To…

Disability-related services such as Early Childhood Intervention Services (ECIS) become a part of life for families when there is a child with disability. Many parents give up their everyday occupations such as self-care and paid work to be able to provide long-term caregiving. This Australian study explored parent perspectives of their family…

Background: Proxy quality of life (QoL) evaluation has been reported to be influenced by many factors. The present study was designed to investigate the impact that the presence of severe intellectual disability (ID) may have on proxy attribution of QoL in the instrumental assessment. Methods: The "other person" form (proxy…

The purpose of the study addressed in this article was to identify ways to reduce risk and improve safe aging in place among rural older adults. Resident and Extension faculty and county educators visited study participants at home to assess functional capacity and the home environment. Extension professionals may be uniquely positioned to provide…

Health-related quality of life (HRQOL) is increasingly being considered in the management of patients with various conditions. HRQOL instruments can be broadly classified as generic or disease-specific measures. Several generic HRQOL instruments in different languages have been developed for paediatric populations including the Pediatric Quality…

The purpose of this study was to test the psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism. The CGSQ was originally developed to assess burden experienced by parents of children and adolescents with serious emotional and behavioral disorders. Study data was collected from 304 primary…

The present study is a long-term prospective follow-up study of a population-based cohort of 120 individuals diagnosed with autism in childhood, followed into late adolescence/early adulthood. Specific aims of the study were to attempt to measure and study social aspects/quality of life in those 108 individuals with autism alive and available for…

Parents of individuals with autism spectrum disorders (ASD) often experience stressors associated with caring for their child. These stressors can cause considerable distress for families, which at times can develop into full blown crisis, and it is important that professionals be able to quickly identify when families are approaching or are in…

Little scientific research has focused on the measure of how positive wellbeing of people caring for people with disabilities. The purposes of the present study are to explore the wellbeing perception and its determinants of caregivers who caring for people with disability. We employed a cross-sectional, self-administrative structured…

Positing role conflict as a bidirectional construct in which work interferes with caregiving (WIC) and caregiving interferes with work (CIW), this study investigated its antecedents (demands and support of caregiving and work) and consequences (role strain). A national sample of 583 women between the ages of 50 and 64 years identified using…

This study develops a quality of life instrument for older Japanese people experiencing dementia (QLDJ). Quality of life (QL) for these older adults is defined as a three dimensional construct including 1) interacting with surroundings, 2) expressing self, and 3) experiencing minimum negative behaviors. From 53 items in the initial item pool, 24…

Purpose: This study describes the development and psychometric properties of a 24-item scale to be used in both research and practice settings that assesses the everyday care values and preferences of individuals with cognitive impairment and the perceptions of family caregivers about their relative's values and preferences for care. Design and…