Abstract
Background. Women with intellectual disabilities (ID) contract breast cancer at the same rate as the general population but have higher breast cancer mortality and lower rates of breast cancer screening. Many women with ID live in group homes or supported residences where they are cared for by direct support workers. While direct support workers are thought to influence client health, this effect is underresearched, and we lack tools for measuring staff empowerment and perceptions regarding client health. Methods. We developed and validated an instrument, the staff empowerment tool (SET), to measure staff empowerment as related to supporting clients in preventive health. Results. The SET was found to be a reliable instrument for measuring staff activation and empowerment in helping clients access mammography screening. Discussion. Quantifying staff empowerment and perspectives is important in studying and reducing disparities among adults with ID, a vulnerable population. Further research to determine the impact of staff empowerment levels on their clients' health and health care access is suggested. The SET is a valuable tool for measuring the construct of staff empowerment, evaluating interventions, and collecting data regarding variation in staff empowerment.
Highlights
Adults with intellectual disabilities (ID) are living longer [1] and experiencing multiple age-related health disparities that have been well-documented [2,3,4]
In a large administrative database analysis of women with ID in Massachusetts, it was noted that clients with ID who lived in 24-hour residential settings were more likely to receive mammograms than clients who lived with family [13], an effect most pronounced in residential settings with an RN to coordinate care
After relevant constructs were identified through these methods, we looked for validated instruments measuring the constructs, which were adapted to the population
Summary
Adults with intellectual disabilities (ID) are living longer [1] and experiencing multiple age-related health disparities that have been well-documented [2,3,4] One such disparity is low rates of age-appropriate screenings [4,5,6], mammography for women [7]. One factor which probably affects the mammography rate, yet is poorly understood, is the impact of staff members or direct support workers on the health behaviors of women with ID who live in group homes [12]. While direct support workers are thought to influence client health, this effect is underresearched, and we lack tools for measuring staff empowerment and perceptions regarding client health. The SET is a valuable tool for measuring the construct of staff empowerment, evaluating interventions, and collecting data regarding variation in staff empowerment
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