What Professionals in Healthcare Can Do: Family Caregivers as Members of the Treatment Team

Chapter
Part of the Caregiving: Research • Practice • Policy book series (CARE)

Abstract

Changes in healthcare delivery in the United States have left their mark on oncology services, the most significant being the shift in patient care from inpatient to outpatient and ambulatory settings. As a result, the family and other caregivers must now assume an expanded role in providing assistance for cancer patients especially at home (Given et al., CA: A Cancer Journal for Clinicians, 51(4), 213–231, 2001; Glajhen, Journal of Supportive Oncology, 2(2), 145–155, 2004).

Keywords

Sugar Fatigue Depression Insurance Coverage Transportation 

References

  1. Adler, H. M. (2002). The sociophysiology of caring in the doctor-patient relationship. Journal of General Internal Medicine, 17(11), 874–881.PubMedCrossRefGoogle Scholar
  2. Albrecht, T. L., Penner, L. A., & Ruckdeschel, J. C. (2003). Understanding patient decisions about clinical trials. Journal of Cancer Education, 18(4), 210–214.PubMedCrossRefGoogle Scholar
  3. Back, A. L., Arnold, R. M., Baile, W. F., Fryer-Edwards, K., & Tulsky, J. (2005). Approaching difficult communication tasks in oncology. CA: A Cancer Journal for Clinicians, 55(3), 164–177.Google Scholar
  4. Baile, W. F., & Aaron, J. (2005). Patient-physician communication in oncology: Past, present, and future. Current Opinion in Oncology, 17(14), 331–335.PubMedCrossRefGoogle Scholar
  5. Baile, W. F., Buckman, R., Lenzi, R., Glober, G, Beale, E. A., & Kudelka, A. (2000). SPIKES: A six-step protocol for delivering bad news: Application to the patient with cancer. Oncologist, 5(4), 302–311.PubMedCrossRefGoogle Scholar
  6. Blackhall, L. G., Murphy, S. T., Gelya, F., Michel, V., & Azen, S. (1995). Ethnicity and attitudes toward patient autonomy. Journal of the American Medical Association, 274(10), 820–825.PubMedCrossRefGoogle Scholar
  7. Brown, M. L., Lipscomb, J., & Snyder, C. (2001). The burden of illness of cancer: Economic cost and quality of life. Annual Review of Public Health, 22, 91–113.PubMedCrossRefGoogle Scholar
  8. Bucher, J. A., Loscalzo, M., Zabora, J., Houts, P. S., Hooker, C., & Brintzenhofeszoc, K. (2001). Problem-solving cancer care education for patients and caregivers. Cancer Practice, 9(2), 66–70.PubMedCrossRefGoogle Scholar
  9. Caplan, G. (1970). The theory and practice of mental health consultation. New York: Basic Books.Google Scholar
  10. Cegala, D. J., McClure, L., Marinelli, T. M., & Post, D. M. (2000). The effects of communication skills training on patients’ participation during medical interviews. Patient Education and Counseling, 41(2), 209–222.PubMedCrossRefGoogle Scholar
  11. Clayton, J. M., Butow, P. N., Tattersall, M. H., Devine, R. J., Simpson, J. M., Aggarwal, G., et al. (2007). Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care. Journal of Clinical Oncology, 25(6), 715–723.PubMedCrossRefGoogle Scholar
  12. Dorval, M., Guay, S., Mondor, M., Masse, B., Falardeau, M., Robidoux, A., et al. (2005). Couples who get closer after breast cancer: Frequency and predictors in a prospective investigation. Journal of Clinical Oncology, 23(15), 588–596.CrossRefGoogle Scholar
  13. Edwards, B. K., Brown, M. L., Wingo, P. A., Howe, H. L., Ward, E., Ries, L. A., et al. (2005). Annual report to the nation on the status of cancer, 1975–2002, featuring population-based trends in cancer treatment. Journal of the National Cancer Institute, 97(19), 1407–1427.PubMedCrossRefGoogle Scholar
  14. Ell, K. (1996). Social networks, social support and coping with serious illness: The family connection. Social Science Medicine, 42(2), 173–183.PubMedCrossRefGoogle Scholar
  15. Engel, G. L. (1983). The biopsychosocial model and family medicine. Journal of Family Practice, 16(2), 409, 412–413.Google Scholar
  16. Fallowfield, L., & Jenkins, V. (1999). Effective communication skills are the key to good cancer care. European Journal of Cancer, 35(110), 1592–1597.PubMedCrossRefGoogle Scholar
  17. Ferrario, S. R., Zotti, A. M., Massara, G., & Nuvolone, G. (2003). A comparative assessment of psychological and psychosocial characteristics of cancer patients and their caregivers. Psycho-Oncology, 12, 1–7.CrossRefGoogle Scholar
  18. Fitch, M. (2000). Supportive care for cancer patients. Hospital Quarterly, 3(4), 39–46.PubMedGoogle Scholar
  19. Frankel, R. M., & Steven, T. (2001). Getting the most out of the clinical encounters: The four habits model. Journal of Medical Practice Management, 16(4), 184–191.PubMedGoogle Scholar
  20. Garg, A., Buckman, R., & Kason, Y. (1997). Teaching medical students how to break bad news. Canadian Medical Association Journal, 156(8), 1159–1164.PubMedPubMedCentralGoogle Scholar
  21. Given, B. A., Given, C. W., & Kozachik, S. (2001). Family support in advanced cancer. CA: A Cancer Journal for Clinicians, 51(4), 213–231.Google Scholar
  22. Glajhen, M. (2004). The emerging role and needs of family caregivers in cancer care. Journal of Supportive Oncology, 2(2), 145–155.Google Scholar
  23. Gray-Price, H., & Szczesny, S. (1985). Crisis intervention with families of cancer patients: A developmental approach. Topics in Clinical Nursing, 7(1), 58–70.PubMedGoogle Scholar
  24. Grunfeld, E., Coyle, D., Whelan, T., Clinch, J., Reyno, L., Earle, C. C., et al. (2004). Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal, 170(12), 1811–1812.CrossRefGoogle Scholar
  25. Hack, T. F., Pickles, T., Bultz, B. D., Reuther, J. D., Weir, L. M., Degner, L. F., et al. (2003). Impact of providing audiotapes of primary adjuvant treatment consultations to women with breast cancer: A multi-site, randomized, controlled trial. Journal of Clinical Oncology, 21(22), 4138–4144.PubMedCrossRefGoogle Scholar
  26. Hampton, T. H. (2005). Cancer treatment’s trade-off: Years of added life can have long term costs. Journal of the American Medical Association, 94(2), 167–168.Google Scholar
  27. Heiney, S. (1988). Assessing and intervening with dysfunctional families. Oncology Nursing Forum, 15(5), 585–590.PubMedGoogle Scholar
  28. Isaksen, A. S., Thuen, F., & Hanestad, B. (2003). Patients with cancer and their close relatives: Experiences with treatment, care, and support. Cancer Nursing, 26(1), 68–74.PubMedCrossRefGoogle Scholar
  29. Jefford, M., & Tattersall, M. H. N. (2002). Informing and involving cancer patients in their own care. The Lancet Oncology, 3(10), 629–637.PubMedCrossRefGoogle Scholar
  30. Joint Commission on Accreditation of Hospitals. (2004). Spiritual assessment. Retrieved from http://www.jointcommission.org/AccreditationPrograms/Hospitals/Standards/FAQs/Provision+of+Care/Assessment/Spiritual_Assessment.htm. Accessed Feb 2009.
  31. Keller, M. (2001). Information supplied to cancer patients and their caregivers: No more unmet needs? Supportive Care in Cancer, 9(8), 563–564.PubMedCrossRefGoogle Scholar
  32. Kettler, P. J., & Baile, W. F. (2005). Caring for the cancer patient: The caregiver’s perspective. Psycho-Oncology, 14, S55.Google Scholar
  33. Le Chatelier, H. L. (1888). A general statement of the laws of equilibrium. Comptee Rendus, 99, 786–789.Google Scholar
  34. Lev, E. L. (1985). Community support for oncology patient and family. Topics in Clinical Nursing, 7(1), 71–78.PubMedGoogle Scholar
  35. Lewis F. M., Woods N. F., Hough E. E., & Bensley L. S. (1989). The family’s functioning with chronic illness in the mother: The spouse’s perspective. Social Science Medicine, 29, 1261–1269.PubMedCrossRefGoogle Scholar
  36. Lipkin, M. (1996). Patient education and counseling in the context of modern patient-physician-family communication. Patient Education and Counseling, 27(1), 5–11.PubMedCrossRefGoogle Scholar
  37. Lunney, J. R. (2000). Resources for caregivers of terminally ill cancer patients. Cancer Practice, 8(2), 99–100.PubMedCrossRefGoogle Scholar
  38. Maguire, P., Fairbairn, S., & Fletcher, C. (1986). Consultation skills of young doctors: I—Benefits of feedback training in interviewing as students persist. British Medical Journal, 292(6535), 1573–1576.PubMedCrossRefPubMedCentralGoogle Scholar
  39. Masera, G., Spinetta, J. J., Jankovic, M., Ablin, A. R., Buchwall, I., Van Dongen-Melman, J., et al. (1998). Guidelines for a therapeutic alliance between families and staff: A report of the SIOP working committee on psychosocial issues in pediatric oncology. Medical and Pediatric Oncology, 30(3), 183–186.PubMedCrossRefGoogle Scholar
  40. Matthews, D. A., Suchman, A., & Branch, W. T. (1993). Making “connexions”: Enhancing the therapeutic potential of patient-clinician relationships. Annals of Internal Medicine, 118(12), 973–977.PubMedCrossRefGoogle Scholar
  41. McMillan, S. C., Small, B. J, Weitzner, M., Schonwetter, R., Tittle, M., Moody, L., et al. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer, 106(1), 214–222.PubMedCrossRefGoogle Scholar
  42. Mills, M. E., & Sullivan, K. (1999). The importance of information giving for patients newly diagnosed with cancer: A review of the literature. Journal of Clinical Nursing, 8(6), 631–642.PubMedCrossRefGoogle Scholar
  43. Mishel, M., Hostetter, T., King, B., & Graham, V. (1984). Predictors of psychosocial adjustment in patients newly diagnosed with gynecological cancer. Cancer Nursing, 7(4), 291–299.PubMedCrossRefGoogle Scholar
  44. Morris, S. M., & Thomas, C. (2001). The carer’s place in the cancer situation: Where does the carer stand in the medical setting? European Journal of Cancer Care, 10(2), 87–95.PubMedCrossRefGoogle Scholar
  45. Mossman, J., Boudioni, M., & Slevin, M. L. (1999). Cancer information: A cost-effective intervention. European Journal of Cancer, 35(11), 1587–1591.PubMedCrossRefGoogle Scholar
  46. Nijboer, C., Tempelaar, R., Triemestra, M., van den Bos, G. A. M., & Sanderman R. (2001). The role of social and psychologic resources in caregiving of cancer patients. Cancer, 91(5), 1029–1039.PubMedCrossRefGoogle Scholar
  47. Northouse, L. L. (2005). Helping families of patients with cancer. Oncology Nursing Forum, 32(4), 743–750.PubMedCrossRefGoogle Scholar
  48. Northouse, P. G., & Northouse, L. L. (1987). Communication and cancer: Issues confronting patients, health professionals, and family members. Journal of Psychosocial Oncology, 5(3), 17–46.CrossRefGoogle Scholar
  49. Ong, L. M., Visser, M. R., Lammes, F. B., van Der Velden, J., Kuenen, B. C., de Haes, J. C. (2000). Effect of providing cancer patients with the audiotaped initial consultation on satisfaction, recall and quality of life: A randomized, double-blind study. Journal of Clinical Oncology, 18(16), 3052–3060.PubMedGoogle Scholar
  50. Parker, P. A., Baile, W. F., de Moor, C., Lenzi, R., Kudelka, A. P., & Cohen, L. (2001). Breaking bad news about cancer: Patients’ preferences for communication. Journal of Clinical Oncology, 19(7), 2049–2056.PubMedGoogle Scholar
  51. Pasacreta, J. V., Barg, F., Nuamah, I., & McCorkle, R. (2000). Participant characteristics before and 4 months after attendance at a family caregiver cancer education program. Cancer Nursing, 23(4), 295–303.PubMedCrossRefGoogle Scholar
  52. Peteet, J., & Greenberg, B. (1995). Marital crisis in oncology patients: An approach to initial intervention by primary clinicians. General Hospital Psychiatry, 17(3), 201–207.PubMedCrossRefGoogle Scholar
  53. Quinn, W. H., & Herndon, A. (1986). The family ecology of cancer. Journal of Psychosocial Oncology, 4(1/2), 45–59.CrossRefGoogle Scholar
  54. Rickel, L. M. (1987). Making mountains manageable: Maximizing quality of life through crisis intervention. Oncology Nursing Forum, 14(4), 29–34.PubMedGoogle Scholar
  55. Sardell, A. N., & Trierweiler, S. J. (1993). Disclosing the cancer diagnosis: Procedures that influence patient hopefulness. Cancer, 72(11), 3355–3365.PubMedCrossRefGoogle Scholar
  56. Scott, J. L., Halford, W. K., & Ward, B. G. (2004). United we stand? The effects of a couple coping intervention and adjustment to early stage breast gynecological cancer. Journal of Consulting Clinical Psychology, 72(6), 1122–1135.PubMedCrossRefGoogle Scholar
  57. Shanafelt, T. (2005). Finding meaning, balance and personal satisfaction in the practice of oncology. Journal of Supportive Oncology, 3(2), 157–162.PubMedGoogle Scholar
  58. Shanafelt, T., Chung, H., White, H., & Lyckholm, L. J. (2006). Shaping your career to maximize personal satisfaction in the practice of oncology. Journal of Clinical Oncology, 24(24), 4020–4026.PubMedCrossRefGoogle Scholar
  59. Shelby, R. A., Taylor, K. L., Kerner, J. F., Coleman, E., & Blum, D. (2002). The role of community-based and philanthropic organizations in meeting cancer patient and caregiver needs. CA: A Cancer Journal for Clinicians, 52(4), 229–246.Google Scholar
  60. Siegel, K., Raveis, V. H., Mor, V., & Houts, P. (1991). The relationship of spousal caregiver burden to patient disease and treatment-related conditions. Annals of Oncology, 2(7), 511–516.PubMedGoogle Scholar
  61. Speice, J., Harkness, J., Laneri, H., Frankel, R., Roiter, D., Kornblith, A. B., et al. (2000). Involving family members in cancer care: Focus group considerations of patients and oncological providers. Psycho-Oncology, 9(2), 101–112.PubMedCrossRefGoogle Scholar
  62. Spinetta, J. J., Jankovic, M., Ben Arush, M. W., Eden, T., Epelman, C., Greenberg, M. L., et al. (2000). Guidelines for the recognition, prevention and remediation of burnout in health care professionals participating in the care of children with cancer: Report of the SIOP working committee on psychosocial issues in pediatric oncology. Medical and Pediatric Oncology, 35(2), 122–125.PubMedCrossRefGoogle Scholar
  63. Thomas, C., & Morris, S. M. (2002). Informal carers in cancer contexts. European Journal of Cancer Care, 11, 178–182.PubMedCrossRefGoogle Scholar
  64. Toseland, R. W., Blanchard, C. G., & McCallion, P. (1995). A problem solving intervention for caregivers of cancer patients. Social Science Medicine, 40(4), 517–528.PubMedCrossRefGoogle Scholar
  65. Tummala, M. K., & Maguire, W. P. (2005). Recurrent ovarian cancer. Clinical Advances in Hematology & Oncology, 3(9), 723–736.Google Scholar
  66. Welch-McCaffrey, D. (1988). Family issues in cancer care: Current dilemmas and future directions. Journal of Psychosocial Oncology, 6(1/2), 199–211.Google Scholar
  67. Wong, R. K. S., Franssen, E., Szumacher, E., Connolly, R., Evans, M., Page, B., et al. (2002). What do patients living with advanced cancer and their carers want to know? A needs assessment. Supportive Care in Cancer, 10(5), 408–415.PubMedCrossRefGoogle Scholar
  68. Yun, Y. H., Rhee, Y. S., Kang, I. O., Lee, J. S., Bang, S. M., Lee, W. S., et al. (2005). Economic burdens and quality of life of family caregivers of cancer patients. Oncology, 68(2–3), 107–114.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2012

Authors and Affiliations

  1. 1.Department of Behavioral Science, M.D. Anderson Cancer CenterThe University of TexasHoustonUSA
  2. 2.Department of Psychiatry, M.D. Anderson Cancer CenterThe University of TexasHoustonUSA
  3. 3.Department of Community Oncology, M.D. Anderson Cancer CenterThe University of TexasHoustonUSA

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