A Qualitative Study of Caregivers' Experiences With Newly Diagnosed Advanced Colorectal Cancer

Arlene D. Houldin

family and caregivers, caregiver stress
ONF 2007, 34(2), 323-330. DOI: 10.1188/07.ONF.323-330

Purpose/Objectives: To report on a descriptive, qualitative study of 14 caregivers of patients newly diagnosed with advanced colorectal cancer.

Research Approach: Qualitative.

Setting: One urban ambulatory cancer center in the northeastern United States.

Participants: 14 identified caregivers of patients newly diagnosed with stage III or IV colorectal cancer.

Methodologic Approach: Semistructured interviews were taped recorded. Interviewers asked participants to describe their experiences caring for a loved one with colorectal cancer. Thematic content analysis with inductive coding was used to code the transcribed interview data. Throughout the data-coding process, emics in each category were compared within and between categories to maximize the fit of participants' data. Categories were reviewed in a final stage of analysis and further organized into domains from which the core category was derived.

Main Research Variables: Caregiver experiences of living with a person with colorectal cancer, effect on daily living, coping strategies used, and effect on children.

Findings: The coded interview data yielded three domains: Experiencing Total Disruption of My Life, Staying Positive, and Attempting to Keep Family and Children's Routines as Normal as Possible. The core category that explained study participants' caregiving experiences was "balancing caregiving activities and disruptions while dealing positively with daily demands and personal impact."

Conclusions: The dominant experiences of the participants focused on coming to terms with the disease's disruption in their lives, attempting to deal positively with the effect of the disease, and maintaining normalcy in family life.

Interpretation: Targeted assessment of caregivers' needs is important in the three dimensions of the study domains. Clinicians who work with caregivers of patients with cancer should offer direct support because caregivers cope with the care of their loved one and struggle with their own distress and with maintaining normal family life. Findings suggest the importance of offering psychosocial support to caregivers and providing guidance to caregivers for support of their children and families.

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    American Cancer Society. (2007). Cancer facts and figures 2007. Atlanta, GA: Author.
    Baider, L., Perez, T., & De-Nour, A.K. (1989). Gender and adjustment to chronic disease: A study of couples with colon cancer. General Hospital Psychiatry, 11, 1-8.
    Bowman, K.F., Deimling, G.T., Smerglia, V., Sage, P., & Kahana, B. (2003). Appraisal of the cancer experience by older long-term survivors. Psycho-Oncology, 12, 226-238.
    Broughton, M., Bailey, J., & Linney, J. (2004). How can experiences of patients and carers influence the clinical care of large bowel cancer? European Journal of Cancer Care, 13, 318-327.
    Carter, P.A. (2002). Caregivers' descriptions of sleep changes and depressive symptoms. Oncology Nursing Forum, 29, 1277-1283.
    Carter, P.A. (2003). Family caregivers' sleep loss and depression over time. Cancer Nursing, 26, 253-259.
    Carter, P.A., & Acton, G.J. (2006). Personality and coping: Predictors of depression and sleep problems among caregivers of individuals who have cancer. Journal of Gerontological Nursing, 32(2), 45-53.
    Corbin, J.M., & Strauss, A.L. (1990). Grounded theory research: Procedures, canons, and evaluative criteria. Qualitative Sociology, 13(1), 3-21.
    Glaser, B.G., & Strauss, A. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine.
    Goldstein, N.E., Concato, J., Fried, T.R., Kasl, S.V., Johnson-Hurzeler, R., & Bradley, E.H. (2004). Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. Journal of Palliative Care, 20, 38-43.
    Grunfeld, E., Coyle, D., Whelan, T., Clinch, J., Reyno, L., Earle, 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, 1795-1801.
    Krippendorf, K. (1980). Content analysis: An introduction to its methodology. Beverly Hills, CA: Sage.
    Lewis, F.M., & Deal, L.W. (1995). Balancing our lives: A study of the married couple's experience with breast cancer recurrence. Oncology Nursing Forum, 22, 943-953.
    Lewis, F.M., Haberman, M.R., & Wallhagen, M.I. (1986). How adults with late-stage cancer experience personal control. Journal of Psychosocial Oncology, 4(4), 27-42.
    Maguire, P., Walsh, S., Jeacock, J., & Kingston, R. (1999). Physical and psychological needs of patients dying from colo-rectal cancer. Palliative Medicine, 13, 45-50.
    Manne, S. (1998). Cancer in the marital context: A review of the literature. Cancer Investigation, 16, 188-202.
    Maughan, K., Heyman, B., & Matthews, M. (2002). In the shadow of risk. How men cope with a partner's gynaecological cancer. International Journal of Nursing Studies, 39, 27-34.
    Northouse, L.L., Mood, D., Templin, T., Mellon, S., & George, T. (2000). Couples' patterns of adjustment to colon cancer. Social Science and Medicine, 50, 271-284.
    Spradley, J.P. (1979). The ethnographic interview. New York: Holt, Rinehart, and Winston.
    Spradley, J.P. (1980). Participant observation. Orlando, FL: Harcourt Brace Jovanovich College.
    Strauss, A. (1987). Qualitative analysis for social scientists. New York: Cambridge University Press.
    Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
    Winterling, J., Wasteson, E., Glimelius, B., Sjoden, P., & Nordin, K. (2004). Substantial changes in life: Perceptions in patients with newly diagnosed advanced cancer and their spouses. Cancer Nursing, 27, 381-388.