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Quality of Life Research
Published in: Quality of Life Research 1/2023

02-09-2022

The psychometric properties of a caregiving-related strain scale in oncology

Authors: Margaret L. Longacre, Melissa F. Miller, Carolyn Y. Fang

Published in: Quality of Life Research | Issue 1/2023

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Abstract

Background

Caregivers are rarely assessed for caregiving-related strain. This study explored the psychometric properties of the caregiving-related physical, emotional, and financial strain questions in the National Alliance for Caregiving’s (NAC) survey and a new total score (NAC-3).

Methods

Comparisons were made to existing caregiver quality of life, distress, and burden instruments through an online, cross-sectional survey of U.S. adult cancer caregivers.

Results

Findings from 299 caregivers showed that the NAC-3 was moderately to strongly associated with each of the comparison instruments. Similar concepts were also shown to be more strongly correlated (except physical health construct) and dissimilar concepts items had weaker correlations.

Conclusion

Findings suggest that the total score and individual items are psychometrically sound for use as compared to established caregiving-related instruments. The total score and items provide a concise option, potentially beneficial for clinical use, and can be compared to nationally representative samples of caregivers through NAC’s surveys.
Literature
1.
2.
Kim, Y., & Schulz, R. (2008). Family caregivers’ strains: Comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and Health, 20(5), 483–503.CrossRef
3.
4.
Bevans, M., & Sternberg, E. M. (2012). Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. Journal of the American Medical Association, 307(4), 398–403.
5.
Geng, H. M., Chuang, D. M., Yang, F., et al. (2018). Prevalence and determinants of depression in caregivers of cancer patients: A systematic review and meta-analysis. Medicine, 97(39), e11863.CrossRef
6.
Götze, H., Brähler, E., Gansera, L., Schnabel, A., Gottschalk-Fleischer, A., & Köhler, N. (2018). Anxiety, depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient’s death. Eur J Cancer Care (Engl), 27(2), e12606.CrossRef
7.
Sherwood, P. R., Given, B. A., Donovan, H., et al. (2008). Guiding research in family care: A new approach to oncology caregiving. Psycho-Oncology, 17(10), 986–996.CrossRef
8.
Longacre, M. L., Brewer, B., Hubbard, A., Ashare, R. L., & Patterson, F. (2021). Caregiver health by context: Moderating effects of mental health and health behaviors. Western Journal of Nursing Research, 43(7), 622–630.CrossRef
9.
Hopps, M., Iadeluca, L., McDonald, M., & Makinson, G. T. (2017). The burden of family caregiving in the United States: Work productivity, health care resource utilization, and mental health among employed adults. Journal of multidisciplinary healthcare, 10, 437–444.CrossRef
10.
Litzelman, K., & Yabroff, K. R. (2015). How are spousal depressed mood, distress, and quality of life associated with risk of depressed mood in cancer survivors? Longitudinal findings from a national sample. Cancer Epidemiology Biomarkers and Prevention, 24(6), 969–977.CrossRef
11.
Milbury, K., Badr, H., Fossella, F., Pisters, K. M., & Carmack, C. L. (2013). Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer. Supportive Care in Cancer, 21(9), 2371–2379.CrossRef
12.
IOM. (2001) Crossing the quality chasm: A new health system for the 21st century: The National Academies Press Washington DC.
13.
Medicine Io. (2008) Retooling for an aging America: Building the health care workforce. The National Academies Press
14.
Wolff, J. L., Feder, J., & Schulz, R. (2016). Supporting family Caregivers of older americans. New England Journal of Medicine, 375(26), 2513–2515.CrossRef
15.
Coleman, E. A. (2016). Family caregivers as partners in care transitions: The Caregiver Advise Record and Enable Act. Journal of Hosptial Medicine, 11(12), 883–885.CrossRef
16.
Alfano, C. M., Leach, C. R., Smith, T. G., et al. (2019). Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery, research, education, and policy. CA: A Cancer Journal for Clinicians, 69(1), 35–49.
17.
Tanco, K., Park, J. C., Cerana, A., Sisson, A., Sobti, N., & Bruera, E. (2017). A systematic review of instruments assessing dimensions of distress among caregivers of adult and pediatric cancer patients. Palliative & Supportive Care, 15(1), 110–124.CrossRef
18.
McMillan, S. C., & Mahon, M. (1994). The impact of hospice services on the quality of life of primary caregivers. Oncology Nursing Forum, 21(7), 1189–1195.
19.
NAC, AARP. (2020) Caregiving in the U.S. 2020 Report. National Alliance for Caregiving AARP 2020
20.
NAC, AARP. (2015) Caregiving in the U.S. 2015. Washington, D.C
21.
Thornton, M., & Travis, S. S. (2003). Analysis of the reliability of the modified caregiver strain index. Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 58(2), S127-132.CrossRef
22.
Robinson, B. C. (1983). Validation of a caregiver strain index. Journal of Gerontology, 38(3), 344–348.CrossRef
23.
24.
Onega, L. L. (2008). Helping those who help others: The modified caregiver strain index. The American journal of nursing, 108(9), 62–69.CrossRef
25.
Zwahlen, D., Hagenbuch, N., Carley, M. I., Recklitis, C. J., & Buchi, S. (2008). Screening cancer patients’ families with the distress thermometer (DT): A validation study. Psycho-Oncology, 17(10), 959–966.CrossRef
26.
Wood, D. E. (2015). National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines for Lung Cancer Screening. Thoracic surgery clinics, 25(2), 185–197.CrossRef
27.
Cutillo, A., O’Hea, E., Person, S., Lessard, D., Harralson, T., & Boudreaux, E. (2017). The Distress thermometer: Cutoff points and clinical use. Oncology Nursing Forum, 44(3), 329–336.CrossRef
28.
29.
30.
Fujinami, R., Sun, V., Zachariah, F., Uman, G., Grant, M., & Ferrell, B. (2015). Family caregivers’ distress levels related to quality of life, burden, and preparedness. Psycho-Oncology, 24(1), 54–62.CrossRef
31.
Higginson, I. J., Gao, W., Jackson, D., Murray, J., & Harding, R. (2010). Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions. Journal of Clinical Epidemiology, 63(5), 535–542.CrossRef
32.
Andresen, E. M. (2000). Criteria for assessing the tools of disability outcomes research. Archives of physical medicine and rehabilitation, 81(12 Suppl 2), S15-20.CrossRef
33.
Cramer, D., & Howitt, D. L. (2004). The Sage dictionary of statistics. Sage.CrossRef
34.
Carlozzi, N. E., Hahn, E. A., Goodnight, S. M., et al. (2018). Patient-reported outcome measures in Huntington disease: Quality of life in neurological disorders (Neuro-QoL) social functioning measures. Psychological assessment, 30(4), 450–458.CrossRef
35.
Dima, A. L. (2018). Scale validation in applied health research: Tutorial for a 6-step R-based psychometrics protocol. Health psychology and behavioral medicine, 6(1), 136–161.CrossRef
36.
Weir, J. P. (2005). Quantifying test-retest reliability using the intraclass correlation coefficient and the SEM. Journal of strength and conditioning research, 19(1), 231–240.
37.
Kent, E., & Dionne-Odom, J. N. (2019). Population-based profile of mental health and support service need among family caregivers of adults with cancer. Journal of Oncology Practice, 15(2), e122–e131.CrossRef
38.
Hagell, P., Alvariza, A., Westergren, A., & Årestedt, K. (2017). Assessment of burden among family caregivers of people with Parkinson’s disease using the zarit burden interview. Journal of Pain and Symptom Management, 53(2), 272–278.CrossRef
39.
Fischer, J. E., Bachmann, L. M., & Jaeschke, R. (2003). A readers’ guide to the interpretation of diagnostic test properties: Clinical example of sepsis. Intensive care medicine, 29(7), 1043–1051.CrossRef
40.
Longacre, M. L., Keleher, C., Chwistek, M., et al. (2021). Developing an integrated caregiver patient-portal system. Healthcare (Basel, Switzerland), 9(2), 193.
41.
Applebaum, A. J., Kent, E. E., & Lichtenthal, W. G. (2021). Documentation of caregivers as a standard of care. Journal of Clinical Oncology, 39(18), 1955–1958.CrossRef
Metadata
Title
The psychometric properties of a caregiving-related strain scale in oncology
Authors
Margaret L. Longacre
Melissa F. Miller
Carolyn Y. Fang
Publication date
02-09-2022
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 1/2023
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-022-03235-7

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