Relationships and emotional wellbeing among African American and White advanced cancer caregivers

Patient Education and Counseling

Volumn 85, Issue 3, 2011, Pages 446-453

  Francis, Linda E ^a   Bowman, Karen F ^a   Kypriotakis, George ^a   Rose, Julia Hannum ^a  

^a CASE WESTERN RESERVE UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

Cancer; Caregiving; Distress and wellbeing; Race; Relationships

Indexed keywords

ADULT; ADVANCED CANCER; AFRICAN AMERICAN; AGED; ANXIETY; ARTICLE; CANCER PATIENT; CAREGIVER; CAREGIVER BURDEN; CAREGIVER SUPPORT; CAUCASIAN; CONTROLLED STUDY; DEPRESSION; EMOTIONAL STRESS; FAMILY RELATION; FEMALE; HEALTH CARE PERSONNEL; HUMAN; HUMAN EXPERIMENT; HUMAN RELATION; MALE; NORMAL HUMAN; OUTCOME ASSESSMENT; PRIORITY JOURNAL; PROFILE OF MOOD STATES; PSYCHOLOGICAL WELL BEING; RACE DIFFERENCE;

ADOLESCENT; ADULT; AFRICAN AMERICANS; AGED; AGED, 80 AND OVER; CAREGIVERS; EMOTIONS; EUROPEAN CONTINENTAL ANCESTRY GROUP; FAMILY RELATIONS; FEMALE; HUMANS; INTERPERSONAL RELATIONS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; NEOPLASMS; QUESTIONNAIRES; SOCIAL SUPPORT; SOCIOECONOMIC FACTORS; STRESS, PSYCHOLOGICAL; TERMINAL CARE; YOUNG ADULT;

EID: 81555214477     PISSN: 07383991     EISSN: 18735134     Source Type: Journal    
DOI: 10.1016/j.pec.2011.01.023     Document Type: Article

References (80)

1. Nijboer C., Triemstra M., Tempelaar R., Mulder M., Sanderman R., van den Bos G.A.M. Patterns of caregiver experiences among partners of cancer patients. The Gerontologist 2000, 40:738-746.
2. Given B., Wyatt G., Given C., Sherwood P., Gift A., DeVoss D., et al. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum 2004, 31:1105-1115.
3. Northouse L.L. Helping families of patients with cancer. Oncol Nurs Forum 2005, 32:743-750.
4. Drentea P., Goldner M.A. Caregiving outside of the home: the effects of race on depression. Ethn Health 2006, 11:41-57.
5. Pinquart M., Sorensen S. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. The Gerontologist 2005, 45:90-106.
6. Gaugler J.E., Given W.C., Linder J., Kataria R., Tucker G., Regine W.F. Work, gender, and stress in family cancer caregiving. Support Care Cancer 2008, 16:347-357.
7. Kim Y., Baker F., Spillers R.L., Wellisch D.K. Psychological adjustment of cancer caregivers with multiple roles. Psycho-Oncology 2006, 15:795-804.
8. Kennedy B.R., Mathis C.C., Woods A.K. African Americans and their distrust of the health care system: healthcare for diverse populations. J Cult Divers 2007, 14:56-60.
9. Halbert C.H., Weathers B., Delmoor E., Mahler B., Coyne J., Thompson H.S., et al. Racial differences in medical mistrust among men diagnosed with prostate cancer. Cancer 2009, 115:2553-2561.
10. Gaugler J.E., Hanna N., Linder J., Given C.W., Tolberta V. Cancer caregiving and subjective stress: a multi-site, multi-dimensional analysis. Psycho-Oncology 2005, 14:771-785.
11. Pearlin L.I., Mullan J.T., Semple S.J., Skaff M.M. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist 1990, 30:583-594.
12. Given B.A., Given C.W., Kozachik S. Family support in advanced cancer. CA Cancer J Clin 2001, 51:213-231.
13. Francis L.E., Worthington J., Kypriotakis G., Rose J.H. Relationship quality and burden among caregivers for late-stage cancer patients. Support Care Cancer 2009, 10.1007/s00520-009r-r0765-5.
14. Townsend A.L., Franks M.M. Quality of the relationship between elderly spouses: influence on spouse caregivers' subjective effectiveness. Fam Relat 1997, 46:33-39.
15. Williamson G.M., Shaffer D.R. Relationship quality and potentially harmful behaviors by spousal caregivers: how we were then, how we are now. Psychol Aging 2001, 16:217-226.
16. Yates M.E., Tennstedt S., Chang B.H. Contributors to and mediators of psychological well-being for informal caregivers. J Gerontol 1999, 54:P12-P22.
17. Northouse L.L., Mood D., Templin T., Mellon S., George T. Couples' patterns of adjustment to colon cancer. Soc Sci Med 2000, 50:271-284.
18. Northouse L., Templin T., Mood D. Couples' adjustment to breast disease during the first year following diagnosis. J Behav Med 2001, 24:115-136.
19. Teno J.M., Casey V.A., Welch L.C., Edgman-Levitan S. Patient-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members. J Pain Symptom Manage 2001, 22:738-751.
20. Rose J.H., Bowman K.F., O'Toole E.E., Abbott K., Love T.E., Thomas C., et al. Caregiver objective burden and assessments of patient-centered, family-focused care for frail elderly veterans. The Gerontologist 2007, 47:21-33.
21. Kristjanson L.J., Sloan J.A., Dudgeon D., Adaskin E. Family members' perceptions of palliative cancer care: predictors of family functioning and family members' health. J Palliat Care 1996, 12:10-20.
22. Dibbelt S., Schaidhammer M., Fleischer C., Greitemann B. Patient-doctor interaction in rehabilitation: the relationship between perceived interaction quality and long-term treatment results. Patient Educ Couns 2009, 76:328-335.
23. Given B, Wyatt G., Given C., Sherwood P., Gift A., DeVoss D., et al. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum 2006, 31:1105-1117.
24. Aneshensel C.S., Botticello A.L., Yamamoto-Mitani N. When caregiving ends: the course of depressive symptoms after bereavement. J Health Soc Behav 2004, 45:422-440.
25. Kim Y, Given B.A. Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer Suppl 2008, 112:2556-2568.
26. Kissane D.W., Bloch S. Family focused grief therapy 2002, Open University Press, Philadelphia.
27. Rose J.H., Kypriotakis G., Bowman K.F., Einstadter D., O'Toole E.E., Mechekano R., et al. Patterns of adaptation in patients living long term with advanced cancer. Cancer 2009, 115(Suppl.):4298-4310.
28. Step M.M., Rose J.H., Albert J.M., Cheruvu V.K., Siminoff L.A. Modeling patient-centered communication: oncologist relational communication and patient communication involvement in breast cancer adjuvant therapy decision-making. Patient Educ Couns 2009, 77:369-378.
29. Ommen O., Janssen C., Neugebauer E., Bouillon B., Rehm K., Rangger C., et al. Trust, social support and patient type-associations between patients perceived trust, supportive communication and patients preferences in regard to paternalism, clarification and participation of severely injured patients. Patient Educ Couns 2008, 73:196-204.
30. Maly R.C., Stein J.A., Umezawa Y, Leake B., Anglin M.D. Racial/ethnic differences in breast cancer outcomes among older patients: effects of physician communication and patient empowerment. Health Psychol 2008, 27:728-736.
31. Thorne S.E., Hislop T.G., Armstrong E.-A., Oglov V. Cancer care communication: the power to harm and the power to heal?. Patient Educ Couns 2008, 71:34-40.
32. Zachariae R., Pedersen C.G., Jensen A.B., Ehrnrooth E., Rossen P.B., von der Maase H. Association of perceived physician communication style with patient satisfaction, distress, cancer-related self-efficacy, and perceived control over the disease. Br J Cancer 2003, 88:658-665.
33. Frick E., Rieg-Appleson C., Tyroller M., Bumeder I. Social support, affectivity, and the quality of life of patients and their support-givers prior to stem cell transplantation. J Psychosoc Oncol 2005, 23:15-34.
34. Musil C.M, Morris D.L., Warner C.B., Saeid H. Issues in caregivers' stress and providers' support. Res Aging 2003, 25:505-526.
35. Cherlin E., Fried T., Prigerson H.G., Schulman-Green D., Johnson-Hurzeler R., Bradley E.H. Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said?. J Palliat Med 2005, 8:1176-1185.
36. Rabow M.W., Hauser J.M., Adams J. Supporting family Caregivers at the end of life - They don't know what they don't know. J Amer Med Assoc 2004, 291:483-491.
37. Merton R.K. On theoretical sociology 1967, The Free Press, NY.
38. Fishman J., O'Dwyer P., Lu H.L., Henderson H., Asch D.A., Casarett D.J. Race, treatment preferences, and hospice enrollment: eligibility criteria may exclude patients with the greatest needs for care. Cancer 2009, 115:689-697.
39. True G., Phipps E.J., Braitman L.E., Harralson T., Harris D., Tester W. Treatment preferences and advance care planning at end of life: the role of ethnicity and spiritual coping in cancer patients. Ann Behav Med 2005, 30:174-179.
40. Phipps E., True G., Harris D., Chong U., Tester W., Chavin S.I., et al. Approaching the end of life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers. J Clin Oncol 2003, 21:549-554.
41. Dessio W, Wade C., Chao M., Kronenberg F., Cushman L.E., Kalmuss D. Religion, spirituality, and healthcare choices of African-American women: results of a national survey. Ethn Dis 2004, 14:189-197.
42. Jones R.A., Taylor A.G., Bourguignon C., Steeves R., Fraser G., Lippert M., et al. Complementary and alternative medicine modality use and beliefs among African American prostate cancer survivors. Oncol Nurs Forum 2007, 34:359-364.
43. Dilworth-Anderson P., Williams I.C., Gibson B.E. Issues of race, ethnicity and culture in caregiving research: a twenty year review [1980-2000]. The Gerontologist 2002, 42:237-272.
44. Weinland J.A. The lived experience of informal African American male caregivers. Am J Mens Health 2009, 3:16-24.
45. Kosloski K., Schaefer J.P., Allwardt D., Allwardt D., Montgomery R.J.V., Karner T.X. The role of cultural factors on clients' attitudes toward caregiving, perceptions of service delivery, and service utilization. Home Health Care Serv Q 2002, 21:65-88.
46. Cagney K.A., Agree E.M. Racial differences in skilled nursing care and home health use: the mediating effects of family structure and social class. J Gerontol B 1999, 54:S223-S236.
47. Washington K.T., Bickel-Swenson D., Stephens N. Barriers to hospice use among African Americans: a systematic review. Health Soc Work 2008, 33:267-274.
48. Mitchell B.L., Mitchell L.C. Review of the literature on cultural competence and end-of-life treatment decisions: the role of the hospitalist. J Natl Med Assoc 2009, 101:920-926.
49. White T.M., Townsend A.L., Stephens M.A.P. Comparisons of African American and White women in the parent care role. The Gerontologist 2000, 40:718-728.
50. Kessler R.C., Neighbors H.W. A new perspective on the relationships among race, social class and psychological distress. J Health Soc Behav 1986, 27:107-115.
51. Bowman K.F., Rose J.H., Radziewicz R.M., O'Toole E.E., Berila R. Family caregiver engagement in a coping and communication support intervention tailored to advanced cancer patients and families. Cancer Nurs 2009, 32:73-81.
52. Rose J.H., O'Toole E.E., Einstadter D., Love T.E., Shenko C.A., Dawson N.V. Patient age, well-being, perspectives, and care practices in the early treatment phase for late-stage cancer. J Gerontol 2008, 63A:960-967.
53. Radziewicz R.M., Rose J.H., Bowman K.F., Berila R.A., O'Toole E.E., Given B. Establishing treatment fidelity in a coping and communication support telephone intervention for aging patients with advanced cancer and their family caregivers. Cancer Nurs 2009, 32:193-202.
54. Shacham S. A shortened version of the profile of mood states. J Pers Assess 1983, 47:305-306.
55. Moos R.H., Moos B.S. Family environment scale manual 1981, Consulting Psychologists Press, Stanford, CA.
56. Kissane D.W., McKenzie M., Bloch S., Moskowitz C., McKenzie D.P., O'Neill I. Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement. Am J Psychiatry 2006, 163:1208-1218.
57. Holahan C.J., Moos R.H. Social support and adjustment: predictive benefits of social climate indices. Am J Community Psychol 1982, 10:403-415.
58. Kristjanson L.J., Atwood J.R., Degner L.F. Validity and reliability of the family inventory of needs of advanced cancer patients. J Nurs Meas 1995, 3:109-126.
59. Kaiser Family Foundation State Health Facts.org 2007, Retrieved 3/20/09 from http://www.statehealthfacts.org/profileind.jsp?rgn=37&ind=15&cat=1.
60. Rose J.H. Social support and cancer: adult patients' desire for support from family, friends and health professionals. Am J Community Psychol 1990, 18:439-463.
61. Bezold C. The future of patient-centered care: scenarios, visions and audacious goals. J Altern Complement Med 2005, 11:S-77-S-84.
62. Bissell P, May C.R., Noyce P.R. From compliance to concordance: barriers to accomplishing a re-framed model of health care interactions. Soc Sci Med 2004, 58:851-862.
63. Blenkinsopp A. From compliance to concordance: how are we doing?. Int J Pharm Pract 2001, 9:65-66.
64. Laidlaw T.S., Kaufman D.M., Sargeant J., MacLeod H., Blake K., Simpson D. What makes a physician an exemplary communicator with patients?. Patient Educ Couns 2007, 68:2153-2160.
65. Schoenmakers B., Buntinx F., Delepeleire J. What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative?. Scand J Prim Health Care 2009, 27:31-40.
66. Pedersen R. Empirical research on empathy in medicine - a critical review. Patient Educ Couns 2009, 76:307-322.
67. Cancer care for the whole patient: meeting psychosocial needs 2008, National Academies Press, Institute of Medicine, Washington, DC. N.E. Adler, A.E.K. Page (Eds.).
68. Marcussen K. Explaining differences in mental health between married and cohabiting individuals. Soc Psychol Q 2005, 68:239-257.
69. Simon R., Marcussen K. Marital transitions, marital beliefs, and mental health. J Health Soc Behav 1999, 40:111-125.
70. Starr P. The social transformation of American medicine: the rise of a sovereign profession and the making of a vast industry 1982, Basic Books, New York.
71. Gamble V.N. Under the shadow of Tuskeegee: African Americans and health care. Am J Public Health 1997, 87:1773-1778.
72. Stewart P. Care provision for African American elders: family attitudes and strategies. J Intergener Relationships 2008, 6:61-81.
73. Dressler W.W. Extended family relationships, social support, and mental health in a southern black community. J Health Soc Behav 1985, 26:39-48.
74. Jarrett R.L., Jefferson S.R., Kelly J.N. Finding community in family: neighborhood effects and African American kin networks. J Comp Fam Stud 2010, 41:299-328.
75. Mazanec P.M., Daly B.J., Townsend A. Hospice utilization and end-of-life care decision making of African Americans. Am J Hosp Palliat Med 2010, 277:560-566.
76. Williams S.W., Hanson L.C., Boyd C., Green M., Goldmon M., Wright G., et al. Communication, decision making, and cancer: what African Americans want physicians to know. J Palliat Med 2008, 11:1221-1226.
77. Shrank W.H., Kutner J.S., Richardson T., Mularski R.A., Fischer S., Kagawa-Singer M. Focus group findings about the influence of culture on communication preferences in end-of-life care. J Gen Intern Med 2005, 20:703-709.
78. Haley W.E., Allen R.S., Reynolds S., Chen H.B., Burton A., Gallagher-Thompson D. Family issues in end-of-life decision making and end-of-life care. Am Behav Sci 2002, 46:284-298.
79. Bellah R.N, Sullivan W.M., Swidler A., Tipton S.M. Habits of the heart: individualism and commitment in American life 1985, University of California Press, Berkeley.
80. Thoits P.A. Stress, coping, and social support processes - where are we - what next. J Health Soc Behav 1995, SI:53-79.