Supportive Care in Cancer

, Volume 20, Issue 2, pp 349–356 | Cite as

Psychosocial aspects of caregiving: perceptions of cancer patients and family caregivers

  • Teresa L. Deshields
  • Anne Rihanek
  • Patricia Potter
  • Qin Zhang
  • Marilee Kuhrik
  • Nancy Kuhrik
  • JoAnn O’Neill
Original Article



The care of cancer patients involves collaboration among health care professionals, patients, and family caregivers. As health care has evolved, more complex and challenging care is provided in the home, usually with the support of family members or friends. The aim of the study was to examine perceived needs regarding the psychosocial tasks of caregiving as reported by patients and caregivers. We also evaluated the association of demographic and clinical variables with self-reported caregiving needs.


Convenience samples of 100 cancer patients and 100 family caregivers were recruited in outpatient medical and radiation oncology waiting areas—the patients and caregivers were not matched dyads. Both groups completed a survey about their perceptions of caregiving tasks, including how difficult the tasks were for them to do. Demographic information was also provided by participants.


Caregivers reported providing more help in dealing with feelings than patients endorsed needing. Caregivers were also more likely than patients to report the psychosocial aspects of caregiving were more difficult for them. Lastly, caregivers were more likely to report helping with logistical issues in comparison with patients expressing this need. Race, length of time since diagnosis, and age were associated with patients’ expressed needs, while only number of hours spent providing care was associated with the caregivers’ reporting of care activities.


Our results suggest that patients may underestimate how difficult caregivers perceive the psychosocial aspects of caregiving to be. Also, it seems that caregivers tend to take on the psychosocial aspects of caregiving, although patients do not tend to report this need. Caregiving needs were only minimally associated with demographic variables, as was participation in caregiving tasks.


Cancer Family caregiving Psychosocial needs Patients’ perceptions Caregivers’ perceptions 



The authors wish to acknowledge the support of the Biostatistics Core, Siteman Comprehensive Cancer Center and NCI Cancer Center Support Grant P30 CA091842.

Conflict of Interest

The authors note that this research was funded by the Siteman Cancer Center and Barnes-Jewish Hospital, the employer for Dr. Deshields, Dr. Potter, Dr. M. Kuhrik, Dr. N. Kuhrik, and Ms. O’Neill. Otherwise, there is no financial relationship that compromises the integrity of the data reported here. The authors have full control of the data and agree to make the data available to the journal to review, if needed.


  1. 1.
    Jemal A, Siegal R, Ward E, Hao Y, Xu J, Thun M (2009) Cancer statistics, 2009. CA Cancer J Clin 59:225–249PubMedCrossRefGoogle Scholar
  2. 2.
    Robison J, Fortinsky R, Kleppinger A, Shugrue N, Porter M (2009) A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work and social isolation. J Gerontol B Psychol Sci Soc Sci 64:788–798PubMedCrossRefGoogle Scholar
  3. 3.
    US Department of Health and Human Services (1998) Informal caregiving: compassion in action. Washington, DCGoogle Scholar
  4. 4.
    National Alliance for Caregiving (2010) Caregiving in the United States: Executive summary, National Alliance for Caregiving in association with the American Association of Retired Persons, November 2009. Available at: Accessed on: August 2010
  5. 5.
    Yabroff KR, Kim Y (2009) Time costs associated with informal caregiving for cancer survivors. Cancer 115:4362–4373PubMedCrossRefGoogle Scholar
  6. 6.
    van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin J et al (2010) Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psycho-Oncol. doi: 10.1002/pon.1703 Google Scholar
  7. 7.
    Given B, Given C, Kozachik S (2001) Family support in advanced cancer. CA Cancer J Clin 51:213–231PubMedCrossRefGoogle Scholar
  8. 8.
    Bakas T, Lewis RR, Parsons JE (2001) Caregiving tasks among family caregivers of patients with lung cancer. Oncol Nurs Forum 28:847–854PubMedGoogle Scholar
  9. 9.
    Sherwood P, Donovan H, Given C, Lu X et al (2008) Predictors of employment and lost hours from work in cancer caregivers. Psycho-Oncol 17:598–605CrossRefGoogle Scholar
  10. 10.
    Himmelstein DU, Thorne D, Warren E, Woolhandler S (2009) Medical bankruptcy in the United States, 2007: results of a national study. Am J Med 122:741–746PubMedCrossRefGoogle Scholar
  11. 11.
    Yun Y, Rhee Y, Kang I, Lee J, Bang S et al (2005) Economic burdens and quality of life of family caregivers of cancer patients. Oncology 68:107–114PubMedCrossRefGoogle Scholar
  12. 12.
    Schubart J, Kinzie M, Farace E (2008) Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro-Oncology 10:61–72PubMedCrossRefGoogle Scholar
  13. 13.
    Yabroff KR, Lawrence W, Clauser S, Davis W, Brown M (2004) Burden of illness in cancer survivors: findings from a population-based national sample. J Natl Cancer Inst 96:1322–1330PubMedCrossRefGoogle Scholar
  14. 14.
    Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25:4829–4834PubMedCrossRefGoogle Scholar
  15. 15.
    Schumacher K, Stewart B, Archbold P, Capparro M et al (2008) Effects of caregiving demand, mutuality, and preparedness on family caregiver outcomes during cancer treatment. Oncol Nurs Forum 35:49–56PubMedCrossRefGoogle Scholar
  16. 16.
    Spillers RL, Wellisch DK, Kim Y, Matthews BA, Baker F (2008) Family caregivers and guilt in the context of cancer care. Psychosomatics 49:511–519PubMedCrossRefGoogle Scholar
  17. 17.
    Gaugler J, Linder J, Given C, Kataria R et al (2008) The proliferation of primary cancer caregiving stress to secondary stress. Cancer Nurs 31:116–123PubMedCrossRefGoogle Scholar
  18. 18.
    Schumacher K, Stewart B, Archbold P (2007) Mutuality and preparedness moderate the effects of caregiving demand on cancer family caregiver outcomes. Nurs Res 56:425–433PubMedCrossRefGoogle Scholar
  19. 19.
    Bloom J (2002) Surviving and thriving? Psycho-Oncol 11:89–92CrossRefGoogle Scholar
  20. 20.
    Beckjord E, Arora N, McLaughlin W, Oakley-Girvan I et al (2008) Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care. J Cancer Surviv 2:179–189PubMedCrossRefGoogle Scholar
  21. 21.
    Ross S, Mosher C, Ronis-Robin V, Hermele S, Ostroff J (2010) Psychosocial adjustment of family caregivers of head and neck cancer survivors. Support Care Cancer 18:171–178PubMedCrossRefGoogle Scholar
  22. 22.
    Potter P, Deshields T, Kuhrik M, Kuhrik N et al (2010) An analysis of educational and learning needs of cancer patients and unrelated family caregivers. J Cancer Educ 25:538–542Google Scholar
  23. 23.
    Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3:77–101CrossRefGoogle Scholar
  24. 24.
    U.S. Census Bureau (2009) Income, poverty, and health insurance coverage in the United States: 2008. Available at: Accessed on: June 2010
  25. 25.
    Oberst MT, Thomas SE, Gass KA, Ward SE (1989) Caregiving demands and appraisal of stress among family caregivers. Cancer Nurs 12:209–215PubMedCrossRefGoogle Scholar
  26. 26.
    Northouse L, Katapodi M, Song L, Zhang L, Mood D (2010) Interventions with family caregivers of cancer patients. CA Cancer J Clin 60:317–339PubMedGoogle Scholar
  27. 27.
    Bucher J, Loscalzo M, Zabora J, Houts P et al (2001) Problem-solving cancer care education for patients and caregivers. Cancer Pract 9:66–70PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag 2011

Authors and Affiliations

  • Teresa L. Deshields
    • 1
  • Anne Rihanek
    • 2
  • Patricia Potter
    • 1
  • Qin Zhang
    • 2
  • Marilee Kuhrik
    • 1
  • Nancy Kuhrik
    • 1
  • JoAnn O’Neill
    • 1
  1. 1.Siteman Cancer Center, Barnes-Jewish HospitalSt. LouisUSA
  2. 2.Washington University School of MedicineSt. LouisUSA

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