Measuring the Experience and Perception of Suffering
Open accessAbstract
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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ADRD caregivers report higher distress, including symptoms of anxiety and depression, caregiving burden, and existential suffering, than caregivers of people with other chronic diseases such as heart failure or cancer.
“ADRD caregivers report higher distress, including symptoms of anxiety and depression [5–9], caregiving burden [10], and existential suffering [11], than caregivers of people with other chronic diseases, such as heart failure or cancer.”
From Feasibility and acceptability of an acceptance and commitment therapy intervention for caregivers of adults with Alzheimer’s disease and related dementias (2021) · cites this paper as [11]
In Convergent and Discriminant Validity (page unavailable), caregivers in one Alzheimer’s disease sample rated their care recipients’ suffering higher on all three scales, including existential suffering, than caregivers in the other samples. This concerns caregivers’ ratings of care recipients’ suffering, not caregivers’ own existential distress; the comparison samples did not include heart failure or cancer caregivers. (LLM, conf=0.82)
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Family caregiving for older people from a life-span developmental point of view
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Family caregiving for older people from a life-span developmental point of view
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Musik i omvårdnaden av personer med demenssjukdom : en litteraturöversikt
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- Authors
- Schulz, R., Monin, J. K., Czaja, S. J., Lingler, J. H., Beach, S. R., Martire, L. M., Dodds, A., Hebert, R. S., Zdaniuk, B., & Cook, T. B.
- Affiliations
- University of Pittsburgh (US)
- University of Miami (US)
- University of British Columbia (CA)
- Corresponding author
- Schulz, R.
- Venue
- The Gerontologist
- Publisher
- Oxford University Press (OUP)
- Published
- 2010-05-17
- Volume
- 50
- Issue
- 6
- Pages
- 774-784
- ISSN
- 0016-9013 (ISSN-L)
- 1758-5341
- PMC
- PMC3003549
- OpenAlex
- W2124742743
- Cited by
- 90
- References
- 29
- Citations by year
- 2026: 5 · 2025: 8 · 2024: 5 · 2023: 2 · 2022: 5 · 2021: 5 · 2020: 3 · 2019: 3 · 2018: 10 · 2017: 7 · 2016: 4 · 2015: 9 · 2014: 10 · 2013: 7 · 2012: 3
- FWCI
- 4.39
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- The Gerontologist (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Science Foundation (0540865)
- Alzheimer's Association
- U.S. Public Health Service (09573)
- National Institute on Aging (R01AG026010, AG015321, P50AG005133, AG026010, R01AG015321)
- National Heart, Lung, and Blood Institute (HL 076858, HL 076852, R24HL076852, R24HL076858)
- National Institute of Mental Health (MH-071944, P30MH071944)
- National Institute of Nursing Research (R01NR008272, NR 08272, R01NR009573)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Aging, Health, and Disability
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- suffering, physical suffering, psychological suffering, existential suffering, scale development, psychometric properties, Alzheimer's disease, family caregivers, osteoarthritis, African American caregivers, Hispanic caregivers, quality of life, caregiver depression, caregiver burden, older adults
- MeSH terms
- Adaptation, Psychological, Aged, Aged, 80 and over, Alzheimer Disease, Factor Analysis, Statistical, Female, Humans, Interviews as Topic, Male, Osteoarthritis, Perception, Predictive Value of Tests, Psychiatric Status Rating Scales, Psychometrics, Quality of Life, Surveys and Questionnaires, Stress, Psychological, United States, Reproducibility of Results, Caregivers
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