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A measure of subjective burden for dementia care: the Caregiving Difficulty Scale--Intellectual Disability.

BACKGROUND: It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more restrictive settings for persons with intellectual disabilities (ID) and AD. This study focused upon the development of a measure of subjective burden, The Caregiving Difficulty Scale - Intellectual Disability (CDS-ID) as a first step in addressing this measurement deficit. METHODS: An existing caregiver subjective burden scale, the Caregiving Hassles Scale (CHS) was adapted for use with 203 staff caregivers of persons with ID and AD. Preliminary testing of existing CHS items and proposed new items was carried out in two countries, Ireland and the USA. Confirmatory factor analysis with the existing items and exploratory factor analysis with existing and proposed new items for the scale was used to establish the content and test the psychometric properties of a revised scale, the CDS-ID. RESULTS: On the existing CHS items, staff carers appeared to experience greater subjective burden than has been reported for family caregivers. However, the psychometric properties of the CHS found with this population were poor. Factor analysis produced a revised scale, the CDS-ID with three subscales with Cronbach alphas ranging from 0.75 to 0.93 and 38 items overall. CONCLUSIONS: This new scale when used with objective burden and other scales offers an opportunity to more systematically measure the difficulties staff experience when caring for persons with ID who present with symptoms of AD.

Adult↗

Analyzing Pennsylvania community residential facilities for individuals with intellectual and developmental disabilities.

Evolving residential requirements for individuals with mild and moderate intellectual disabilities and related developmental disabilities increasingly place these persons in community settings. The increasing numbers of these individuals are dependent upon local practitioners for needed health services. National and Pennsylvania data are reviewed in an effort to provide a general awareness of these community living arrangements, which in turn may assist in the delivery and the follow-up of oral health services.

Adolescent↗

Factor analysis and norms for parent ratings on the Aberrant Behavior Checklist-Community for young people in special education.

The parents of 601 children and adolescents, responding to a mail survey, rated their children on the Aberrant Behavior Checklist-Community (ABC-C). Factor analysis of ABC-C ratings revealed a factor structure that was similar to the original ABC but without the fifth factor (Inappropriate Speech). Coefficients of congruence were moderate to large for the four-factor model, and alpha coefficients were moderate to high when the original item assignment was imposed. Confirmatory factor analysis indicated a modest level of fit with the traditional method of scoring the ABC and acceptable fit when the items were coded for occurrence (0 or 1). Analysis of subject variables revealed main effects for gender on one subscale (Hyperactivity), main effects for age on two subscales (Irritability; Hyperactivity), and one main effect for classroom assignment on the Stereotypic Behavior subscale. Normative data for parent ratings were presented by age and gender combined, gender alone, and age alone. With some qualifications, the ABC-C appears to be valid for assessing children in special educational settings, although further research is needed on the ABC's factor structure in this population.

Adolescent↗

The relationship between quality of life and self-determination: an international study.

BACKGROUND: The aim of this study was to evaluate the relationship between self-determination and quality of life (QOL) of persons with intellectual disabilities (ID) living in four countries (Canada, United States, Belgium and France). METHOD: Participants were 182 adults with mild ID living in community settings (with families, living independently or in supported living environments). QOL was measured with the Quality of Life Questionnaire. Self-determination was measured using the Adult version of The Arc's Self-Determination Scale. Discriminant function and correlational analyses were conducted. RESULTS: Discriminant function analysis indicated that essential characteristics of self-determination predicted membership in the high QOL group and that overall self-determination and QOL were significantly correlated, as were sub-scale scores. CONCLUSIONS: The study replicates findings from a previous study with an international sample and confirms the importance of self-determination to enhance QOL. Subsequent research should examine the direction of the relationship between self-determination and QOL and examine the relationship of essential characteristics of self-determined behaviour and core domains of QOL in greater detail.

Adult↗

An unobtrusive system for helping a person with blindness and intellectual disability travel in indoor areas.

A system causing no environmental disturbance was employed for helping a woman with blindness and intellectual disability travel in indoor areas. The system provided encouragement and praise while the woman moved in the correct direction and a buzzer sound in the case of incorrect direction through earpieces. The results showed that the woman learned to use the system and traveled successfully.

Acoustic Stimulation↗