Family Caregivers

  • Betty R. Ferrell
  • Polly Mazanec

Caregiving an elder with cancer has the potential to be rewarding and meaningful but is often described as burdensome and overwhelming because caregiver needs are frequently unmet. As the provision of care has transitioned from the hospital to outpatient settings, family caregivers have take responsibility for the day-to-day care of their ill loved ones at home [1–4]. Despite the fact that caring for a loved one at home is technologically more complex than in the past, managed care and other reimbursement restrictions on hospital and home care services have forced family caregivers to provide care to family members with little support.


Palliative Care Adult Child Family Caregiver Informal Caregiver Caregiver Burden 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


  1. 1.
    Ferrell B, Grant M, Borneman T, Juarez G, ter Veer A. Family caregiving in pain management. J Palliat Med 1999;2:185–95.PubMedCrossRefGoogle Scholar
  2. 2.
    Hauser J, Kramer B. Family caregivers in palliative care. Clin Geriatric Med 2004;20:671–88.CrossRefGoogle Scholar
  3. 3.
    Kurtz M, Kurtz J, Given G, Given B. A randomized, controlled trial of a patient/caregiver symptom control intervention: Effects on depressive symptomatology of caregivers of cancer patients. J Pain Symp Manage 2005;30:112–22.CrossRefGoogle Scholar
  4. 4.
    Northouse L. Helping families of patients with cancer. Oncol Nurs Forum 2005;32:743–55.PubMedCrossRefGoogle Scholar
  5. 5.
    Family Caregiving Alliance, National Center on Caregiving. Caregiving in the U.S. Accessed Mar. 22, 2008.
  6. 6.
    Panke JT, Ferrell B. Emotional problems in the family. In: Hanks G, Cherny N, Christakis N, Fallon M, Kaasa S, Portenoy R, (eds.). The Oxford Textbook of Palliative Medicine (3rd ed.). Oxford University Press, New York. 2004.Google Scholar
  7. 7.
    Pearlin L, Mullan J, Semple S, Skaff M. Caregiving and the stress process: An overview of concepts and their measures. Gerontologist 1990;30:583–94.PubMedCrossRefGoogle Scholar
  8. 8.
    Gaugler J, Hanna N, Linder J, Given CW, Tolbert V, Kataria R, Regine W. Cancer caregiving and subjective stress: A multi-site, multi-dimensional analysis. Psycho-Oncology 2005;14:771–85.PubMedCrossRefGoogle Scholar
  9. 9.
    Borneman T, Chu B, Wagman L, Ferrell B, Juarez G, McCahill L, Uman G. Concerns of family caregivers of patients with cancer facing palliative surgery for advanced malignancies. Oncol Nurs Forum 2003;30:997–1005.PubMedCrossRefGoogle Scholar
  10. 10.
    National Alliance for Caregiving & AARP. Caregiving in the U.S. http://www/ Accessed Mar. 10, 2008.
  11. 11.
    Mazanec P.  Distant Caregiving of a Parent with Advanced Cancer.  Doctoral dissertation, Case Western Reserve University, 2008.Google Scholar
  12. 12.
    Jemal A, Siegel R, Ward E, Hao Y, Xu J, Murray T, Thun MJ. Cancer statistics, 2008. CA Cancer J Clin 2008;58(2):71–96.PubMedCrossRefGoogle Scholar
  13. 13.
    Deimling G, Bowman K, Sterns S, Wagner L, Kahana B. Cancer-related worries and psychological distress among older adult, long-term cancer survivors. Psycho-Oncology 2006;14:306–20.CrossRefGoogle Scholar
  14. 14.
    Given B, Sherwood P. Family care for the older person with cancer. Sem Oncol Nurs 2006;22:43–50.CrossRefGoogle Scholar
  15. 15.
    Northouse L, Kershaw T, Mood D, Schaenacker A. Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers. Psycho-Oncology 2005;14:478–91.PubMedCrossRefGoogle Scholar
  16. 16.
    Given B, Given C, Kozachik S. Family support in advanced cancer. CA Cancer J Clin 2001;51:213–31.PubMedCrossRefGoogle Scholar
  17. 17.
    Given B, Given C, Sikorski A, Jeon S, Sherwood P, Rahbar M. The impact of providing symptoms management assistance on caregiver reaction: results of a randomized trial. J Pain Symp Manage 2006;32:433–43.CrossRefGoogle Scholar
  18. 18.
    Given B, Kozachik S, Collins C, DeVoss D, Given C. Caregiver role strain. In: M. Mass, K. Buckwalter, M. Hardy, T. Tripp-Reimer, M. Titler (Editors) Nursing Care of Older Adult Diagnoses: Outcome and Interventions. Mosby, St. Louis, MO. 2001.Google Scholar
  19. 19.
    Matthews B. Role and gender differences in cancer-related distress: A comparison of survivor and caregiver self-reports. Oncol Nurs Forum 2003;30(3):493–9.PubMedCrossRefGoogle Scholar
  20. 20.
    Matthews B, Baker F, Spillers R. Family caregivers and indicators of cancer-related distress. Psychol Health Med 2003;8:45–56.Google Scholar
  21. 21.
    Ferrario S, Zotti A, Massara G, Nuvolone G. A comparative assessment of psychological and psychosocial characteristics of cancer patients and their caregivers. Psycho-Oncology 2003;12:1–7.CrossRefGoogle Scholar
  22. 22.
    Fletcher B, Paul S, Dodd M, Schumacher K, West C, Cooper B, Lee K, Aquizerat B, Swift P, Wara W, Miaskowski C.   Prevalance, severity, and impact of symptoms on female family caregivers of patients at the initiation of radiation therapy for prostate cancer.  J Clin Oncol 2008;26(4):599–605.PubMedCrossRefGoogle Scholar
  23. 23.
    Diwan S, Hougham G, Sachs G. Strain experienced by caregivers of dementia patients receiving palliative care: Findings from the palliative excellence in Alzheimer care efforts (PEACE) program. J Palliat Med 2004;17:797–807.CrossRefGoogle Scholar
  24. 24.
    Given B, Wyatt G, Given C, Sherwood P, Gift A, DeVoss D, Rahbar M. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum 2004;31:1105–1117.Google Scholar
  25. 25.
    Goldstein N, Concato J, Fried T, Kasl S, Johnson-Hurzeler R, Bradley E. Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. J Palliat Care 2004;20:38–43.PubMedGoogle Scholar
  26. 26.
    Bull MJ. Interventions for women as family caregivers. Annu Rev Nurs Res 2001;19:125–44.PubMedGoogle Scholar
  27. 27.
    Kim Y, Baker F, Spillers R, Wellisch D. Psychological adjustment of cancer caregivers with multiple roles. Psycho-Oncology 2006;15:795–804.PubMedCrossRefGoogle Scholar
  28. 28.
    Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: Rounding out the caregiver experience. Int J Geriatr Psychiatry 2002;17(2):184–8.PubMedCrossRefGoogle Scholar
  29. 29.
    Lewis FM. Shifting perspectives: Family-focused oncology nursing Research. Oncol Nurs Forum 2004;31(2):288–92.PubMedCrossRefGoogle Scholar
  30. 30.
    Sharpe L, Butow P, Smith C, McConnell D, Clarke S. The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their careers. Psycho-Oncology 2005;14(2):102–14.PubMedCrossRefGoogle Scholar
  31. 31.
    Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol 2004;2(2):145–55.PubMedGoogle Scholar
  32. 32.
    Montgomery RV, Gonyea J, Hooyman N. Caregiving and the experience of subjective and objective burden. Fam Relat 1985b;34(1):19–26.CrossRefGoogle Scholar
  33. 33.
    Gaugler JE, Hanna N, Linder J, et al. Cancer caregiving and subjective stress: A multi-site, multi-dimensional analysis. Psycho-Oncology 2005;14(9):771–85.PubMedCrossRefGoogle Scholar
  34. 34.
    Nijboer C, Tempelaar R, Triemstra M, van den Bos GA, Sanderman R. The role of social and psychologic resources in caregiving of cancer patients. Cancer 2001;91(5):1029–39.PubMedCrossRefGoogle Scholar
  35. 35.
    Sales E. Family burden and quality of life. Qual Life Res 2003;12(Suppl 1):33–41.PubMedCrossRefGoogle Scholar
  36. 36.
    Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. Can Med Assoc J 2004;170(12):1795–801.CrossRefGoogle Scholar
  37. 37.
    Goldstein NE, Concato J, Fried TR, Kasl SV, Johnson-Hurzeler R, Bradley EH. Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. J Palliat Care 2004;20(1):38–43.PubMedGoogle Scholar
  38. 38.
    Covinsky KE, Goldman L, Cook EF, et al. The impact of serious illness on patients' families. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Med Assoc 1994;272(23):1839–44.CrossRefGoogle Scholar
  39. 39.
    Stajduhar K, Martin W, Barwich D, Fyles G. Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home. Cancer Nurs 2008;31(1):77–85.PubMedCrossRefGoogle Scholar
  40. 40.
    Carter PA. A brief behavioral sleep intervention for family caregivers of persons with cancer. Cancer Nurs 2006;29(2):95–103.PubMedCrossRefGoogle Scholar
  41. 41.
    Schulz R, Beach SR. Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. J Am Med Assoc 1999;282(23):2215–9.CrossRefGoogle Scholar
  42. 42.
    Sarna L, Cooley ME, Brown JK, et al. Quality of life and health status of dyads of women with lung cancer and family members. Oncol Nurs Forum 2006;33(6):1109–16.PubMedCrossRefGoogle Scholar
  43. 43.
    Sherman DW, Ye XY, Beyer McSherry C, Parkas V, Calabrese M, Gatto M. Symptom assessment of patients with advanced cancer and AIDS and their family caregivers: The results of a quality-of-life pilot study. Am J Hosp Palliat Care 2007;24(5):350–65.PubMedCrossRefGoogle Scholar
  44. 44.
    Clark MM, Rummans TA, Sloan JA, et al. Quality of life of caregivers of patients with advanced-stage cancer. Am J Hosp Palliat Care 2006;23(3):185–91.PubMedCrossRefGoogle Scholar
  45. 45.
    Kim Y, Baker F, Spillers RL. Cancer caregivers' quality of life: Effects of gender, relationship, and appraisal. J Pain Symptom Manage 2007;34(3):294–304.PubMedCrossRefGoogle Scholar
  46. 46.
    Mellon S, Northouse LL, Weiss LK. A population-based study of the quality of life of cancer survivors and their family caregivers. Cancer Nurs 2006;29(2):120–31; quiz 132–3.PubMedCrossRefGoogle Scholar
  47. 47.
    Armsden GC, Lewis FM. Behavioral adjustment and self-esteem of school-age children of women with breast cancer. Oncol Nurs Forum 1994;21(1):39–45.PubMedGoogle Scholar
  48. 48.
    Armsden GC, Lewis FM. The child's adaptation to parental medical illness: Theory and clinical implications. Patient Educ Couns 1993;22(3):153–65.PubMedCrossRefGoogle Scholar
  49. 49.
    Shands ME, Lewis FM, Zahlis EH. Mother and child interactions about the mother's breast cancer: An interview study. Oncol Nurs Forum 2000;27(1):77–85.PubMedGoogle Scholar
  50. 50.
    Zahlis EH, Lewis FM. The mother's story of the school-age child's experience with the mother's breast cancer. J Psychosoc Oncol 1998;16(2):25–43.CrossRefGoogle Scholar
  51. 51.
    Edwards B, Clarke V. The psychological impact of a cancer diagnosis on families: The influence of family functioning and patients' illness characteristics on depression and anxiety. Psycho-Oncology 2004;13(8):562–76.PubMedCrossRefGoogle Scholar
  52. 52.
    Bowman KF, Rose JH, Deimling GT. Appraisal of the cancer experience by family members and survivors in long-term survivorship. Psycho-Oncology 2006;15(9):834–45.PubMedCrossRefGoogle Scholar
  53. 53.
    Juarez G, Ferrell B, Uman G, Podnos Y, Wagman L. Distress and quality of life concerns of family caregivers of patients undergoing palliative surgery. Cancer Nurs 2008;31(1):2–10.PubMedCrossRefGoogle Scholar
  54. 54.
    Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R. Family caregiving in hospice: Effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J 2001;15(4):1–18.PubMedCrossRefGoogle Scholar
  55. 55.
    Chentsova-Dutton Y, Shuchter S, Hutchin S, Strause L, Burns K, Zisook S. The psychological and physical health of hospice caregivers. Ann Clin Psychiatry 2000;12(1):19–27.PubMedGoogle Scholar
  56. 56.
    Pinquart M, Duberstein PR. Optimism, pessimism, and depressive symptoms in spouses of lung cancer patients. Psychol Health 2005;20(5):565–78.CrossRefGoogle Scholar
  57. 57.
    Dumont S, Turgeon J, Allard P, Gagnon P, Charbonneau C, Vezina L. Caring for a loved one with advanced cancer: Determinants of psychological distress in family caregivers. J Palliat Med 2006;9(4):912–21.PubMedCrossRefGoogle Scholar
  58. 58.
    Doorenbos AZ, Given B, Given CW, et al. The influence of end-of-life cancer care on caregivers. Res Nurs Health 2007;30(3):270–81.PubMedCrossRefGoogle Scholar
  59. 59.
    Miaskowski C, Kragness L, Dibble S, Wallhagen M. Differences in mood states, health status, and caregiver strain between family caregivers of oncology outpatients with and without cancer-related pain. J Pain Symp Manage 1997;13(3):138–47.CrossRefGoogle Scholar
  60. 60.
    Kim Y, Duberstein PR, Sorensen S, Larson MR. Levels of depressive symptoms in spouses of people with lung cancer: Effects of personality, social support, and caregiving burden. Psychosomatics 2005;46(2):123–30.PubMedCrossRefGoogle Scholar
  61. 61.
    Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G. Hidden morbidity in cancer: Spouse caregivers. Am J Clin Oncol 2007;25(30):4829–34.CrossRefGoogle Scholar
  62. 62.
    Badr H, Taylor CL. Social constraints and spousal communication in lung cancer. Psycho-Oncology 2006;15(8):673–83.PubMedCrossRefGoogle Scholar
  63. 63.
    National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 2004.
  64. 64.
    Mellon S. Comparisons between cancer survivors and family members on meaning of the illness and family quality of life. Oncol Nurs Forum 2002;29(7):1117–25.PubMedCrossRefGoogle Scholar
  65. 65.
    Downe-Wamboldt B, Butler L, Coulter L. The relationship between meaning of illness, social support, coping strategies, and quality of life for lung cancer patients and their family members. Cancer Nurs 2006;29(2):111–9.PubMedCrossRefGoogle Scholar
  66. 66.
    Sherman DW, Ye XY, McSherry C, Calabrese M, Parkas V, Gatto M. Spiritual well-being as a dimension of quality of life for patients with advanced cancer and AIDS and their family caregivers: Results of a longitudinal study. Am J Hosp Palliat Care 2005;22(5):349–62.PubMedCrossRefGoogle Scholar
  67. 67.
    Murray SA, Kendall M, Boyd K, Worth A, Benton TF. Exploring the spiritual needs of people dying of lung cancer or heart failure: A prospective qualitative interview study of patients and their carers. Palliat Med 2004;18(1):39–45.PubMedCrossRefGoogle Scholar
  68. 68.
    Shelby RA, Taylor KL, Kerner JF, Coleman E, Blum D. The role of community-based and philanthropic organizations in meeting cancer patient and caregiver needs. CA Cancer J Clin 2002;52(4):229–46.PubMedCrossRefGoogle Scholar
  69. 69.
    Scherbring M. Effect of caregiver perception of preparedness on burden in an oncology population. Oncol Nurs Forum 2002;29(6):E70–6.PubMedCrossRefGoogle Scholar
  70. 70.
    Schumacher KL, Stewart BJ, Archbold PG. Mutuality and preparedness moderate the effects of caregiving demand on cancer family caregiver outcomes. Nurs Res 2007;56(6):425–33.PubMedCrossRefGoogle Scholar
  71. 71.
    Acton GJ. Health-promoting self-care in family caregivers. West J Nurs Res 2002;24(1):73–86.PubMedCrossRefGoogle Scholar
  72. 72.
    Lu YF, Wykle M. Relationships between caregiver stress and self-care behaviors in response to symptoms. Clin Nurs Res 2007;16(1):29–43.PubMedCrossRefGoogle Scholar
  73. 73.
    Sisk RJ. Caregirer Burden and health Promotion. International Journal of Nursing studies 2000;37:37–43.Google Scholar

Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  1. 1.Nurse Practitioner, Cancer Support Team, Ireland Cancer CenterUniversity Hospitals of ClevelandClevelandUSA
  2. 2.City of Hope National Medical CenterDuarteUSA

Personalised recommendations