Skip to main content
SpringerLink
Log in

Unique characteristics of informal hospice cancer caregiving

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

The purpose of this study was to describe the unique characteristics of informal hospice cancer caregiving.

Methods

Researchers conducted a secondary analysis of data drawn from a randomized clinical trial of an informal hospice caregiving intervention (N = 348). Demographic characteristics and measures of the informal caregiving experience of hospice patients and their informal caregivers were compared based on the patient’s diagnosis using chi-square tests for association of categorical variables and t tests for continuous variables.

Results

Informal caregivers of cancer patients differed from their non-cancer counterparts in a number of respects including patient age, caregiver age, patient residence, relationship between patient and caregiver, amount and duration of care provided, likelihood to incur out-of-pocket expenses related to patient care, caregiver problem-solving style, and impact on caregiver daily schedule. There were no statistically significant differences between cancer and non-cancer caregivers in terms of gender, race, employment status, anxiety, and quality of life.

Conclusions

While cancer and non-cancer caregivers are similar in many respects, a number of unique features characterize the informal hospice cancer caregiving experience. Attention to these unique features will allow hospice providers to tailor supportive care interventions to better address cancer caregivers’ needs.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Centers for Medicare & Medicaid Services (n.d.) Medicare hospice data trends: 1998-2009. http://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/Hospice/Medicare_Hospice_Data.html. Accessed 18 Apr 2014

  2. National Hospice and Palliative Care Organization (2013) NHPCO facts and figures: hospice care in America

  3. Teno JM, Weitzen S, Fennell ML, Mor V (2001) Dying trajectory in the last year of life: does cancer trajectory fit other diseases? J Palliat Med 4(4):457–464. doi:10.1089/109662101753381593

    Article  CAS  PubMed  Google Scholar 

  4. Davis J (2012) Examining disparities related to the use of hospice care: cancer vs. non-cancer diagnoses. Georgia State University

  5. Steindal SA, Bredal IS, Sorbye LW, Lerdal A (2011) Pain control at the end of life: a comparative study of hospitalized cancer and noncancer patients. Scand J Caring Sci 25(4):771–779. doi:10.1111/j.1471-6712.2011.00892.x

    Article  PubMed  Google Scholar 

  6. Tranmer JE, Heyland D, Dudgeon D, Groll D, Squires-Graham M, Coulson K (2003) Measuring the symptom experience of seriously ill cancer and noncancer hospitalized patients near the end of life with the memorial symptom assessment scale. J Pain Symptom Manage 25(5):420–429

    Article  PubMed  Google Scholar 

  7. Currow DC, Smith J, Davidson PM, Newton PJ, Agar MR, Abernethy AP (2010) Do the trajectories of dyspnea differ in prevalence and intensity by diagnosis at the end of life? A consecutive cohort study. J Pain Symptom Manage 39(4):680–690. doi:10.1016/j.jpainsymman.2009.09.017

    Article  PubMed  Google Scholar 

  8. Stiel S, Matthies DM, Seuss D, Walsh D, Lindena G, Ostgathe C (2014) Symptoms and problem clusters in cancer and non-cancer patients in specialized palliative care—is there a difference? J Pain Symptom Manage. doi:10.1016/j.jpainsymman.2013.08.018

    Google Scholar 

  9. Steinhauser KE, Arnold RM, Olsen MK, Lindquist J, Hays J, Wood LL, Burton AM, Tulsky JA (2011) Comparing three life-limiting diseases: does diagnosis matter or is sick, sick? J Pain Symptom Manage 42(3):331–341. doi:10.1016/j.jpainsymman.2010.11.006

    Article  PubMed Central  PubMed  Google Scholar 

  10. Harding R, Higginson I (2001) Working with ambivalence: informal caregivers of patients at the end of life. Support Care Cancer 9(8):642–645

    Article  CAS  PubMed  Google Scholar 

  11. Hudson P (2004) Positive aspects and challenges associated with caring for a dying relative at home. Int J Palliat Nurs 10(2):58–65, discussion 65

    Article  PubMed  Google Scholar 

  12. Chentsova-Dutton Y, Shucter S, Hutchin S, Strause L, Burns K, Zisook S (2000) The psychological and physical health of hospice caregivers. Ann Clin Psychiatry 12(1):19–27. doi:10.3109/10401230009147083

    Article  CAS  PubMed  Google Scholar 

  13. Parker Oliver D, Albright DL, Washington K, Wittenberg-Lyles E, Gage A, Mooney M, Demiris G (2013) Hospice caregiver depression: the evidence surrounding the greatest pain of all. J Soc Work End Life Palliat Care 9(4):256–271

    Article  PubMed  Google Scholar 

  14. Washington KT, Demiris G, Pike K, Kruse R, Parker Oliver D (2014) Anxiety among informal hospice caregivers: an exploratory study. Palliat Support Care

  15. Wilder HM, Parker Oliver D, Demiris G, Washington K (2008) Informal hospice caregiving: the toll on quality of life. J Soc Work End Life Palliat Care 4(4):312–332

    Article  PubMed Central  PubMed  Google Scholar 

  16. Girgis A, Abernethy AP, Currow DC (2014) Caring at the end of life: do cancer caregivers differ from other caregivers? BMJ Support Palliat Care. doi:10.1136/bmjspcare-2013-000495

    PubMed  Google Scholar 

  17. Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R (2001) Family caregiving in hospice: effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J 15(4):1–18

    Article  CAS  PubMed  Google Scholar 

  18. Courtney K, Demiris G, Oliver DP, Porock D (2005) Conversion of the Caregiver Quality of Life Index to an interview instrument. Eur J Cancer Care (Engl) 14(5):463–464. doi:10.1111/j.1365-2354.2005.00612.x

    Article  CAS  Google Scholar 

  19. Spitzer RL, Kroenke K, Williams JB, Lowe B (2006) A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 166(10):1092–1097. doi:10.1001/archinte.166.10.1092

    Article  PubMed  Google Scholar 

  20. Heppner PP, Witty TE, Dixon WA (2004) Problem-solving appraisal and human adjustment: a review of 20 years of research using the problem solving inventory. Couns Psychol 32(3):344–428

    Article  Google Scholar 

  21. Given CW, Given B, Stommel M, Collins C, King S, Franklin S (1992) The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health 15(4):271–283

    Article  CAS  PubMed  Google Scholar 

  22. Albright DL, Oliver DP, Demiris G (2014) Reaction to caregiving by hospice caregivers upon enrollment. Am J Hosp Palliat Care. doi:10.1177/1049909114531327

    Google Scholar 

  23. Clark D, Ferguson C, Nelson C (2000) Macmillan Carers Schemes in England: results of a multicentre evaluation. Palliat Med 14(2):129–139

    Article  CAS  PubMed  Google Scholar 

  24. Hudson P, Quinn K, Kristjanson L, Thomas T, Braithwaite M, Fisher J, Cockayne M (2008) Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care. Palliat Med 22(3):270–280. doi:10.1177/0269216307088187

    Article  CAS  PubMed  Google Scholar 

  25. McMillan SC, Small BJ, Weitzner M, Schonwetter R, Tittle M, Moody L, Haley WE (2006) Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial. Cancer 106(1):214–222

    Article  PubMed  Google Scholar 

  26. Demiris G, Parker Oliver D, Wittenberg-Lyles E, Washington K, Doorenbos A, Rue T, Berry D (2012) A noninferiority trial of a problem-solving intervention for hospice caregivers: in person versus videophone. J Palliat Med 15(6):653–660. doi:10.1089/jpm.2011.0488

    Article  PubMed Central  PubMed  Google Scholar 

  27. Northouse L, Kershaw T, Mood D, Schafenacker A (2005) Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers. Psychooncology 14(6):478–491. doi:10.1002/pon.871

    Article  PubMed  Google Scholar 

  28. Regan TW, Lambert SD, Girgis A, Kelly B, Kayser K, Turner J (2012) Do couple-based interventions make a difference for couples affected by cancer? A systematic review. BMC Cancer 12:279. doi:10.1186/1471-2407-12-279

    Article  PubMed Central  PubMed  Google Scholar 

  29. 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):483–503. doi:10.1177/0898264308317533

    Article  PubMed  Google Scholar 

  30. O’Connor DL (2007) Self-identifying as a caregiver: exploring the positioning process. J Aging Stud 21(2):165–174

    Article  Google Scholar 

  31. Johnson KS (2013) Racial and ethnic disparities in palliative care. J Palliat Med 16(11):1329–1334. doi:10.1089/jpm.2013.9468

    Article  PubMed Central  PubMed  Google Scholar 

  32. Washington KT, Bickel-Swenson D, Stephens N (2008) Barriers to hospice use among African Americans: a systematic review. Health Soc Work 33(4):267–274

    Article  PubMed  Google Scholar 

Download references

Acknowledgment

This work was supported by the National Institute of Nursing Research Award Number R01NR012213 (principal investigator: Demiris) registered as clinical trial record NCT01444027. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Nursing Research or the National Institutes of Health.

Conflict of interest

The authors declare no conflict of interest with respect to the research, authorship, and/or publication of this article. The principal investigator (author) retains full control of all primary data and agrees to allow the journal to review data upon request.

Author information

Authors and Affiliations

  1. Department of Family and Community Medicine, School of Medicine, University of Missouri, MA306 Medical Sciences Building, DC032.00, Columbia, MO, 65212, USA

    Karla T. Washington & Debra Parker Oliver

  2. Department of Psychosocial Nursing and Community Health, School of Nursing, University of Washington, Seattle, WA, USA

    Kenneth C. Pike

  3. Department of Biobehavioral Nursing and Health Services, School of Nursing, University of Washington, Seattle, WA, USA

    George Demiris

  4. Department of Biomedical and Health Informatics, School of Medicine, University of Washington, Seattle, WA, USA

    George Demiris

Authors
  1. Karla T. Washington
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Kenneth C. Pike
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. George Demiris
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Debra Parker Oliver
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Karla T. Washington.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Washington, K.T., Pike, K.C., Demiris, G. et al. Unique characteristics of informal hospice cancer caregiving. Support Care Cancer 23, 2121–2128 (2015). https://doi.org/10.1007/s00520-014-2570-z

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-014-2570-z

Keywords

Search

Navigation