Measuring the Experience and Perception of Suffering

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Abstract
Purpose: Assess psychometric properties of scales developed to assess experience and perception of physical, psychological, and existential suffering in older individuals. Design and Methods: Scales were administered to 3 populations of older persons and/or their family caregivers: individuals with Alzheimer’s disease (AD) and their family caregivers (N = 105 dyads), married couples in whom 1 partner had osteoarthritis (N = 53 dyads), and African American and Hispanic caregivers of care recipients with AD (N = 121). Care recipients rated their own suffering, whereas caregivers provided ratings of perceived suffering of their respective care recipients. In addition, quality of life, health, and functional status data were collected from all respondents via structured in-person interviews. Results: Three scales showed high levels of internal consistency, test–retest reliability, and convergent and discriminant validity. The scales were able to discriminate differences in suffering as a function of type of disease, demonstrated high intra-person correlations and moderately high inter-person correlations and exhibited predicted patterns of association between each type of suffering and indicators of quality of life, health status, and caregiver outcomes of depression and burden. Implications: Suffering is an important but understudied domain. This article provides valuable tools for assessing the experience and perception of suffering in humans.

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