Pragmatic and Internal Validity Issues in Sampling in Caregiver Studies: A Comparison of Population-Based, Registry-Based, and Ancillary Studies

Journal of Aging and Health

Volumn 16, Issue 2, 2004, Pages 175-203

  Fredman, Lisa ^a,f   Tennstedt, Sharon ^b   Smyth, Kathleen A ^c   Kasper, Judith D ^d   Miller, Baila ^c   Fritsch, Thomas ^c   Watson, Maura ^a   Harris, Emily L ^e  

^a BOSTON UNIVERSITY   (United States)

^b New England Research   (United States)

^c CASE WESTERN RESERVE UNIVERSITY   (United States)

^d JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

^e KAISER PERMANENTE   (United States)

^f BOSTON UNIVERSITY SCHOOL OF PUBLIC HEALTH   (United States)

Author keywords

Caregiving; Elderly; Recruitment; Subject participation; Validity

Indexed keywords

ALZHEIMER DISEASE; CAREGIVER; COOPERATION; DAILY LIFE ACTIVITY; ELDERLY CARE; HUMAN; MEDICAL RESEARCH; MEDICARE; REVIEW; SAMPLING;

AFRICAN CONTINENTAL ANCESTRY GROUP; AGED; ALZHEIMER DISEASE; CAREGIVERS; ELIGIBILITY DETERMINATION; EPIDEMIOLOGIC STUDIES; EUROPEAN CONTINENTAL ANCESTRY GROUP; FEMALE; HISPANIC AMERICANS; HUMANS; MALE; REGISTRIES; REPRODUCIBILITY OF RESULTS; RESEARCH DESIGN; SELECTION BIAS;

EID: 1542373672     PISSN: 08982643     EISSN: None     Source Type: Journal    
DOI: 10.1177/0898264303262639     Document Type: Review

References (51)

1. Allen, S. M., Goldscheider, F., & Ciambrone, D. A. (1999). Gender roles, marital intimacy, and nomination of spouse as primary caregiver. Gerontologist, 39(2), 150-158.
2. Baumgarten, M., Hanley, J. A., Infante-Rivard, C., Battista, R. N., Becker, R., & Gauthier, S. (1994). Health of family members caring for elderly persons with dementia. A longitudinal study. Annals of Internal Medicine, 120(2), 126-132.
3. Cefalu, C. A., Ettinger, W. H., & Espeland, M. (1996). A study of the characteristics of the dementia patients and caregivers in dementia-nonspecific adult day care programs. Journal of the American Geriatrics Society, 44(6), 654-659.
4. Chadiha, L., Picot, S., Dilworth-Anderson, P., Magana, S., & Son, G.- R. (2001, November). Recruitment and retention of ethnic minority elders and caregivers. Paper presented at the 54th Annual Meeting of the Gerontological Society of America, Chicago.
5. Cummings, S. R., Black, D.M., Nevitt, M. C., Browner, W. S., Cauley, J. A., Genant, H. K., et al. (1990). Appendicular bone density and age predict hip fracture in women. The study of Osteoporotic Fractures Research Group. JAMA, 263(5), 665-668.
6. Dura, J. R., & Kiecolt-Glaser, J. K. (1990). Sample bias in caregiving research. Journal of Gerontology, 45(5), 200-204.
7. Earle, J. R., Smith, M. H., Harris, C. T., & Longino, C. F., Jr. (1998). Women, marital status, and symptoms of depression in a midlife national sample. Journal of Women & Aging, 10(1), 41-57.
8. Evans, D. A., Hebert, L. E., Beckett, L. A., Scherr, P. A., Albert, M. S., Chown, M. J., et al. (1997). Education and other measures of socioeconomic status and risk of incident Alzheimer disease in a defined population of older persons. Archives of Neurology, 54(11), 1399-1405.
9. Friedland, R. P. (1993). Epidemiology, education, and the ecology of Alzheimer's disease. Neurology, 43(2), 246-249.
10. George L. K., & Gwyther, L. P. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. The Gerontologist, 26(3), 253-259.
11. Gitlin, L., & Winter, L. (2001, November). The Philadelphia reach study: Rerecruitment, intervention characteristics, and 6-month outcomes on caregiver upset, self-efficacy, strategies, affect, and care recipient behaviors. Paper presented at the 54th Annual Meeting of the Gerontological Society of America, Chicago.
12. Goldman, N., Korenman, S., & Weinstein, R. (1995). Marital status and health among the elderly. Social Science & Medicine, 40(12), 1717-1730.
13. Hart, V. R., Gallagher-Thompson, D., Davies, H. D. DiMinno, M., & Lessin, P. J. (1996). Strategies for increasing participation of ethnic minorities in Alzheimer's disease diagnostic centers: A multifaceted approach in California. The Gerontologist, 36(2), 259-262.
14. Henretta, J. C., Hill, M. S., Li, W., Soldo, B. J., & Wolf, D. A. (1997). Selection of children to provide care: The effect of earlier parental transfers. Journals of Gerontology, Series B, Psychological Sciences & Social Sciences, 52, 110-119.
15. Hinrichsen, G. A., & Ramirez, M. (1992) Black and White dementia caregivers: A comparison of their adaptation, adjustment, and service utilization. The Gerontologist, 32, 375-381.
16. Hooker, K., Manoogian-O'Dell, M., Monahan, D. J., Frazier, L. D., & Shifren, K. (2000). Does type of disease matter? Gender differences among Alzheimer's and Parkinson's disease spouse caregivers. The Gerontologist, 40(5), 568-573.
17. Hughes, M. E., & Waite, L. J. (2002). Health in household context: Living arrangements and health in late middle age. Journal of Health & Social Behavior, 43(1), 1-21.
18. Hultsch, D., MacDonald, S., Hunter, M., Maitland, S., & Dixon, R. (2002). Sampling and generalisability in developmental research: Comparison of random and convenience samples of older adults. International Journal of Behavioral Development, 26(4), 345-359.
19. Kasper, J. D., Shapiro, S., Guralnik, J. M., Bandeen-Roche, K. J., & Fried, L. P. (1999). Designing a community study of moderately to severely disabled older women: The Women's Health and Aging Study. Annals of Epidemiology, 9(8), 498-507.
20. Katz, S., Ford, A., Moskowitz, R., Jackson, B., & Jaffee, M. (1963). Studies on illness in the aged. The index of ADL: A standardized measure of biological and psychosocial function. Journal of the American Medical Association, 185, 94-99.
21. Kelsey, J. L., Whittemore, A. S., Evans, A. S., & Thompson, W. D. (1996). Methods in observational epidemiology (2nd ed.). New York: Oxford University Press.
22. Kish, L. (1965). Survey sampling. New York: Wiley.
23. Kleinbaum, D., Kupper, L., & Morgenstern, H. (1982). Epidemiologic research, principles and quantitative methods. Belmont, CA: Wadsworth.
24. Lawton, M. P., Moss, M., Hoffman, C., & Perkinson, M. (2000). Two transitions in daughters' caregiving careers. The Gerontologist, 40(4), 437-447.
25. Long, K., Sudha, S., & Mutran, E. J. (1998). Elder-proxy agreement concerning the functional status and medical history of the older person: The impact of caregiver burden and depressive symptomatology. Journal of the American Geriatrics Society, 46(9), 1103-1111.
26. Magaziner, J., Bassett, S. S., Hebel, J. R., & Gruber-Baldini, A. (1996). Use of proxies to measure health and functional status in epidemiologic studies of community-dwelling women aged 65 years and older. American Journal of Epidemiology, 143(3), 283-292.
27. Moorman, P. G., Newman, B., Millikan, R. C., Tse, C. K., & Sandler, D. P. (1999). Participation rates in a case-control study: The impact of age, race, and race of interviewer. Annals of Epidemiology, 9(3), 188-195.
28. Mortimer, J., Boss, P., Caron, W., & Horbal, J. (1994). Measurement issues in caregiver research. In B. Lebowitz (Ed.), Stress effects on family caregivers of Alzheimer's patients: Research and interventions (pp. 370-384). New York: Springer.
29. Mui, A. C. (1992). Caregiver strain among Black and White daughter caregivers: A role theory perspective. The Gerontologist, 32(2), 203-212.
30. National Alliance for Caregiving and the American Association of Retired Persons. (1997). Family caregiving in the U.S.: Findings from a national survey. Bethesda, MD: National Alliance for Caregiving.
31. Navaie-Waliser, M., Feldman, P. H., Gould, D. A., Levine, C., Kuerbis, A. N., & Donelan, K. (2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92(3), 409-413.
32. Neumark, D. E., Stommel, M., Given, C. W., & Given, B. A. (2001). Research design and subject characteristics predicting nonparticipation in a panel survey of older families with cancer. Nursing Research, 50(6), 363-368.
33. Patrick, J. H., Pruchno, R. A., & Rose, M. S. (1998). Recruiting research participants: A comparison of the costs and effectiveness of five recruitment strategies. The Gerontologist, 38(3), 295-302.
34. Riedel, S. E., Fredman, L., & Langenberg, P. (1998). Associations among caregiving difficulties, burden, and rewards in caregivers to older post-rehabilitation patients. Journals of Gerontology, Series B, Psychological Sciences & Social Sciences, 53(3).
35. Rothman, K., & Greenland, S. (1998). Modern epidemiology (2nd ed.). Philadelphia: J.B. Lippincott.
36. Schone, B. S., & Weinick, R. M. (1998). Health-related behaviors and the benefits of marriage for elderly persons. The Gerontologist, 38(5), 618-627.
37. Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. JAMA, 282(23), 2215-2219.
38. Seeman, T. E., Kaplan, G. A., Knudsen, L., Cohen, R., & Guralnik, J. (1987). Social network ties and mortality among the elderly in the Alameda County Study. American Journal of Epidemiology, 126(4), 714-723.
39. Seltzer, M. M., & Li, L. W. (2000). The dynamics of caregiving: Transitions during a three-year prospective study. The Gerontologist, 40(2), 165-178.
40. Silliman, R. A. (1993). Predictors of family caregivers' physical and psychological health following hospitalization of their elders. Journal of the American Geriatrics Society, 41(10), 1039-1046.
41. Soldo, B. J., Wolf, D. A., & Agree, E. M. (1990). Family, households, and care arrangements of frail older women: A structural analysis. Journal of Gerontology, 45(6), S238-249.
42. Stewart, S. L., Swallen, K. C., Glaser, S. L., Horn-Ross, P. L., & West, D. W. (1999). Comparison of methods for classifying Hispanic ethnicity in a population-based cancer registry. American Journal of Epidemiology, 149(11), 1063-1071.
43. Stone, R., Cafferata, G. L., & Sangl, J. (1987) Caregivers of the frail elderly: A national profile. The Gerontologist, 27(5), 616-626.
44. Stone, R. I., & Kemper, P. (1989). Spouses and children of disabled elders: How large a constituency for long-term care reform? Milbank Quarterly, 67(3-4), 485-506.
45. Stuckey, J. C., Neundorfer, M. M., & Smyth, K. A. (1996). Burden and well-being: The same coin or related currency. The Gerontologist, 36(5), 686-693.
46. Tarlow, B. A., & Mahoney, D. F. (2000). The cost of recruiting Alzheimer's disease caregivers for research. Journal of Aging & Health, 12(4), 490-510.
47. Tennstedt, S., & Chang, B. H. (1998). The relative contribution of ethnicity versus socioeconomic status in explaining differences in disability and receipt of informal care. Journals of Gerontology, Series B, Psychological Sciences & Social Sciences, 53(2), S61-70.
48. Tennstedt, S. L., McKinlay, J. B., & Sullivan, L. M. (1989). Informal care for frail elders: The role of secondary caregivers: The Gerontologist, 29(5), 677-683.
49. Vitaliano, P. P., Russo, J., Scanlan, J. M., & Greeno, C. G. (1996). Weight changes in caregivers of Alzheimer's care recipients: Psychobehavioral predictors. Psychology & Aging, 11(1), 155-163.
50. Zanetti, O., Geroldi, C., Frisoni, G. B., Bianchetti, A., & Trabucchi, M. (1999). Contrasting results between caregiver's report and direct assessment of activities of daily living in patients affected by mild and very mild dementia: The contribution of the caregiver's personal characteristics. Journal of the American Geriatrics Society, 47(2), 196-202.
51. Zarit, S. H., Todd, P. A., & Zarit, J. M. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. The Gerontologist, 26(3), 260-266.