Supportive Care in Cancer

, Volume 27, Issue 2, pp 609–616 | Cite as

The experiences of older caregivers of cancer patients following hospital discharge

  • Abby J. SchwartzEmail author
  • Richard F. Riedel
  • Thomas W. LeBlanc
  • Devi Desai
  • Carol Jenkins
  • Ellen Mahoney
  • Janice Humphreys
  • Cristina C. Hendrix
Original Article



This study addressed the experiences of older caregivers of cancer patients in the 2 weeks following a hospital discharge. It sought to understand the challenges they face in providing supportive care to patients at home.


Qualitative descriptive interviews with a narrative approach were conducted with each caregiver at 1 and 2 weeks following the patient’s discharge from the hospital. A thematic analysis approach was used to identify the themes that emerged from the caregiver interviews.


Caregivers were primarily Caucasian (77%), were mostly 68 years of age or older (62%), and were primarily caring for a spouse (69%). Three key themes emerged from the qualitative analysis: caregiver and patient wellness are connected, caregivers’ struggle with control issues, and challenges in communication with health professionals.


These findings highlight psychosocial changes that caregivers experience over the 2-week time period following hospital discharge. Implications include the need to identify interventions to better prepare caregivers for the post-discharge period.


Qualitative research Hospital/ambulatory care Care coordination Caregiving Transitions in care 


Compliance with ethical standards

Ethical approval

All procedures performed in the study involving human participants was in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

IRB approval

Approval from the DUH Institutional Review Board was obtained prior to study commencement.

Informed consent

Informed consent was obtained from all individual participants included in the study.


  1. 1.
    National Alliance for Caregiving, AARP Public Policy Institute (2015) 2015 report: caregiving in the U.S. Accessed 18 June 2017
  2. 2.
    Schulz R, Beach SR (1999) Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA 282(23):2215–2219CrossRefGoogle Scholar
  3. 3.
    Perkins M, Howard VJ, Wadley VG, Crowe M, Safford MM, Haley WE, Howard G, Roth DL (2013) Caregiving strain and all-cause mortality: evidence from the REGARDS study. J Gerontol B Psychol Sci Soc Sci 68(4):504–512CrossRefGoogle Scholar
  4. 4.
    Pinquart M, Sorensen S (2007) Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci 62(2):P126–P137CrossRefGoogle Scholar
  5. 5.
    Ekwall AK, Sivberg B, Hallberg IR (2005) Loneliness as a predictor of quality of life among older caregivers. J Adv Nurs 49(1):23–32CrossRefGoogle Scholar
  6. 6.
    Torres SJ, McCabe M, Nowson CA (2010) Depression, nutritional risk and eating behaviour in older caregivers. J Nutr Health Aging 14(6):442–448CrossRefGoogle Scholar
  7. 7.
    Wittenberg-Lyles E, Demiris G, Oliver DP, Burchett M (2014) Exploring aging-related stress among older spousal caregivers. J Gerontol Nurs 40(8):13–16CrossRefGoogle Scholar
  8. 8.
    Kim Y, Schulz R (2008) Family caregivers’ strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. J Aging Health 20(5):483–503CrossRefGoogle Scholar
  9. 9.
    Ugur O, Elcigil A, Arslan D, Sonmez A (2014) Responsibilities and difficulties of caregivers of cancer patients in home care. Asian Pac J Cancer Prev 15(2):725–729CrossRefGoogle Scholar
  10. 10.
    Janda M, Eakin EG, Bailey L, Walker D, Troy K (2006) Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14(11):1094–1103CrossRefGoogle Scholar
  11. 11.
    Lebel S, Devins GM (2008) Stigma in cancer patients whose behavior may have contributed to their disease. Future Oncol 4(5):717–733CrossRefGoogle Scholar
  12. 12.
    Mosher CE, Danoff-Burg S (2007) Death anxiety and cancer-related stigma: a terror management analysis. Death Studies 31(10):885–907CrossRefGoogle Scholar
  13. 13.
    Wilson K, Luker KA (2006) At home in hospital? Interaction and stigma in people affected by cancer. Soc Sci Med 62(7):1616–1627CrossRefGoogle Scholar
  14. 14.
    Sklenarova H, Krumpelmann A, Haun MW, Friederich HC, Huber J, Thomas M, Winkler EC, Herzog W, Hartmann M (2015) When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer 121(9):1513–1519CrossRefGoogle Scholar
  15. 15.
    Given BA, Given CW, Sherwood PR (2012) Family and caregiver needs over the course of the cancer trajectory. J Support Oncol 10(2):57–6416CrossRefGoogle Scholar
  16. 16.
    Cornwell P, Dicks B, Fleming J, Haines TP, Olson S (2012) Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: establishing a new reality. Support Care Cancer 20(10):2595–2610CrossRefGoogle Scholar
  17. 17.
    Hung H-C, Tsai M-C, Chen S-C, Liao C-T, Chen Y-R, Liu J-F (2013) Change and predictors of social support in caregivers of newly diagnosed oral cavity cancer patients during the first 3 months after discharge. Cancer Nurs 36(6):E17–E24CrossRefGoogle Scholar
  18. 18.
    Lambert VA, Lambert CE (2012) Qualitative descriptive research: an acceptable design. Pac Rim Int J Nurs Res 16(4):255–256Google Scholar
  19. 19.
    Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 23(4):334–340CrossRefGoogle Scholar
  20. 20.
    Neergaard MA, Olesen F, Andersen RS, Sondergaard J (2009) Qualitative description—the poor cousin of health research? BMC Med Res Methodol 9(1):52CrossRefGoogle Scholar
  21. 21.
    Lincoln YS, Guba EG (1985) Naturalistic inquiry. Sage Publications, Newbury ParkCrossRefGoogle Scholar
  22. 22.
    Colorafi KJ, Evans B (2016) Qualitative descriptive methods in health science research. HERD 9(4):16–25CrossRefGoogle Scholar
  23. 23.
    Sullivan-Bolyai S, Bova C, Harper D (2005) Developing and refining interventions in persons with health disparities: the use of qualitative description. Nurs Outlook 53(3):127–133CrossRefGoogle Scholar
  24. 24.
    Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101CrossRefGoogle Scholar
  25. 25.
    Nowell LS, Norris JM, White DE, Moules NJ (2017) Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Methods 16(1):1–13CrossRefGoogle Scholar
  26. 26.
    Saldaña J (2012) The coding manual for qualitative researchers. Sage Publications, Thousand OaksGoogle Scholar
  27. 27.
    NVivo qualitative data analysis Software; QSR International Pty Ltd. Version 10Google Scholar
  28. 28.
    Birks M, Chapman Y, Francis K (2008) Memoing in qualitative research: probing data and processes. J Res Nurs 13(1):68–75CrossRefGoogle Scholar
  29. 29.
    Litzelman K, Green PA, Yabroff KR (2016) Cancer and quality of life in spousal dyads: spillover in couples with and without cancer-related health problems. Support Care Cancer 24(2):763–771CrossRefGoogle Scholar
  30. 30.
    Segrin C, Badger TA (2014) Psychological and physical distress are interdependent in breast cancer survivors and their partners. Psychol Health Med 19(6):716–723CrossRefGoogle Scholar
  31. 31.
    Andrew NE, Kilkenny MF, Naylor R, Purvis T, Cadilhac DA (2015) The relationship between caregiver impacts and the unmet needs of survivors of stroke. Patient Prefer Adherence 9:1065–1073CrossRefGoogle Scholar
  32. 32.
    Ejem DB, Drentea P, Clay OJ (2015) The effects of caregiver emotional stress on the depressive symptomatology of the care recipient. Aging Ment Health 19(1):55–62CrossRefGoogle Scholar
  33. 33.
    Hagedoorn M, Sanderman R, Bolks HN, Tuinstra J, Coyne JC (2008) Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. Psychol Bull 134(1):1–30CrossRefGoogle Scholar
  34. 34.
    Kurtz ME, Kurtz CJ, Given CW, Given BA (2004) Depression and physical health among family caregivers of geriatric patients with cancer—a longitudinal view. Med Sci Monit 10(8):CR447–CR456PubMedGoogle Scholar
  35. 35.
    Northouse LL, Katapodi MC, Schafenacker AM, Weiss D (2012) The impact of caregiving on the psychological well-being of family caregivers and cancer patients. Semin Oncol Nurs 28(4):236–245CrossRefGoogle Scholar
  36. 36.
    Ferrell B, Wittenberg E (2017) A review of family caregiving intervention trials in oncology. CA Cancer J Clin 67(4):318–325CrossRefGoogle Scholar
  37. 37.
    Girgis A, Lambert SD, McElduff P, Bonevski B, Lecathelinais C, Boyes A, Stacey F (2013) Some things change, some things stay the same: a longitudinal analysis of cancer caregivers’ unmet supportive care needs. Psycho-Oncology 22(7):1557–1564CrossRefGoogle Scholar
  38. 38.
    Kim Y, Carver CS, Shaffer KM, Gansler T, Cannady RS (2015) Cancer caregiving predicts physical impairments: roles of earlier caregiving stress and being a spousal caregiver. Cancer 121(2):302–310CrossRefGoogle Scholar
  39. 39.
    Ussher JM, Wong TWK, Perz J (2011) A qualitative analysis of changes in relationship dynamics and roles between people with cancer and their primary informal carer. Health 15(6):650–667CrossRefGoogle Scholar
  40. 40.
    Chiu C, Feuz MA, McMahan RD, Miao Y, Sudore RL (2016) “Doctor, make my decisions”: decision control preferences, advance care planning, and satisfaction with communication among diverse older adults. J Pain Symptom Manag 51(1):33–40CrossRefGoogle Scholar
  41. 41.
    Koops van ‘t Jagt R, de Winter AF, Reijneveld SA, Hoeks JCJ, Jansen CJM (2016) Development of a communication intervention for older adults with limited health literacy: photo stories to support doctor–patient communication. J Health Commun 21(sup2):69–82CrossRefGoogle Scholar
  42. 42.
    Wolff JL, Clayman ML, Rabins P, Cook M, Roter DL (2015) An exploration of patient and family engagement in routine primary care visits. Health Expect 18(2):188–198CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  • Abby J. Schwartz
    • 1
    Email author
  • Richard F. Riedel
    • 2
    • 3
  • Thomas W. LeBlanc
    • 3
    • 4
  • Devi Desai
    • 5
  • Carol Jenkins
    • 1
  • Ellen Mahoney
    • 6
  • Janice Humphreys
    • 7
  • Cristina C. Hendrix
    • 7
  1. 1.East Carolina University School of Social WorkGreenvilleUSA
  2. 2.Division of Medical Oncology, Department of MedicineDuke University School of MedicineDurhamUSA
  3. 3.Duke Cancer InstituteDurhamUSA
  4. 4.Division of Hematologic Malignancies and Cellular Therapy, Department of MedicineDuke University School of MedicineDurhamUSA
  5. 5.Duke University HospitalDurhamUSA
  6. 6.Boston College School of NursingChestnut HillUSA
  7. 7.Duke University School of NursingDurhamUSA

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