The purpose of this study is to illustrate variations in caregiving trajectories as described by informal family caregivers providing end-of-life care. Instrumental case study methodology is used to contrast the nature, course, and duration of the phases of caregiving across three distinct end-of-life trajectories: expected death trajectory , mixed death trajectory, and unexpected death trajectory. The sample includes informal family caregivers (n = 46) providing unpaid end-of-life care to others suffering varied conditions (e.g., cancer, organ failure, amyotrophic lateral sclerosis). The unifying theme of end-of-life caregiving is “seeking normal” as family caregivers worked toward achieving a steady state, or sense of normal during their caregiving experiences. Distinct variations in the caregiving experience correspond to the death trajectory. Understanding caregiving trajectories that are manifest in typical cases encountered in clinical practice will guide nurses to better support informal caregivers as they traverse complex trajectories of end-of-life care.
Bremer, B.A., Simone, A.L., Walsh, S., Simmons, Z., & Felgoise, S.H. (2004). Factors supporting quality of life over time for individuals with amyotrophic lateral sclerosis: The role of positive self-perception and religiosity. Annals of Behavior Medicine, 28(2), 119-125.
2.
Colclough, Y.Y., & Young, H.M. ( 2007). Decision making at end of life among JapaneseAmerican families. Journal of Family Nursing, 13, 201-225.
3.
Corbin, J.M., & Strauss, A. ( 1991). A nursing model for chronic illness management based upon the Trajectory Framework. Scholarly Inquiry for Nursing Practice, 5, 155-174.
4.
Development of the NHPCO research agenda. (2004). National Hospice and Palliative Care Organization Journal of Pain and Symptom Management, 28(5), 488-496.
5.
Glaser, B.G., & Strauss, A.L. ( 1968). Time for dying. Hawthorne, NY: Aldine.
6.
Goldstein, N.E., & Lynn, J. ( 2006). Trajectory of end-stage heart failure: The influence of technology and implications for policy change. Perspectives in Biology and Medicine, 49(1), 10-18.
7.
Gott, M., Barnes, S., Parker, C., Payne, S., Seamark, D., Gariballa, S., et al. (2007). Dying trajectories in heart failure. Palliative Medicine, 21(2), 95-99.
8.
Hauser, J.M., & Kramer, B.J. ( 2004). Family caregivers in palliative care. Clinics in Geriatric Medicine, 20, 671-688.
9.
Hebert, R.S., Arnold, R.M., & Schulz, R. ( 2007). Improving well-being in caregivers of terminally ill patients. Making the case for patient suffering as a focus for intervention research. Journal of Pain and Symptom Management, 34, 539-546.
10.
Hupcey, J.E., Penrod, J., & Fenstermacher, K. (2009). Review article: A model of palliative care for heart failure. American Journal of Hospice & Palliative Care, 26, 399-404.
11.
Improving End-of-Life care. (2004). National Institutes of Health Consensus State of Science Statements, 21(3), 1-28.
12.
Jablonski, A. ( 2004). The illness trajectory of end-stage renal disease dialysis patients. Research and Theory for Nursing Practice, 18(1), 51-72.
13.
Jo, S., Brazil, K., Lohfeld, L., & Willison, K. ( 2007). Caregiving at the end of life: Perspectives from spousal caregivers and care recipients. Palliative Supportive Care , 5(1), 11-7.
14.
Kirkevold, M. ( 2002). The unfolding illness trajectory of stroke. Disability and Rehabilitation, 24, 887-898.
15.
Lunney, J.R., Lynn, J., Foley, D.J., Lipson, S., & Guralnik, J.M. (2003). Patterns of functional decline at the end of life. The Journal of the American Medical Association, 289, 2387-2392.
16.
Lunney, J.R., Lynn, J., & Hogan, C. ( 2002). Profiles of older Medicare decedents. Journal of the American Geriatric Society, 50, 1108-1112.
17.
Meleis, A.I., & Trangenstein, P.A. (1994) Facilitating transitions: Redefinition of a nursing mission. Nursing Outlook, 42, 255-259.
18.
Murray, S.A., Kendall, M., Grant, E., Boyd, K., Barclay, S., & Sheikh, A. ( 2007). Patterns of social, psychological, and spiritual decline toward the end of life in lung cancer and heart failure. Journal of Pain and Symptom Management, 34, 393-402.
19.
National Consensus Project for Quality Palliative Care. ( 2009). Clinical practice guidelines for quality palliative care (2nd ed.). Available from http://www.nationalconsensusproject.org
20.
Pearlin, L.I., Mullan, J.T., Semple, S.J., & Skaff, M.M. ( 1990). Caregiving and the stress process: An overview of concepts and their measures. Gerontologist, 30, 583-594.
21.
Penrod, J., Hupcey, J.E., Shipley, P., Loeb, S.J., & Baney, B. (in review). Seeking normal: A model of caregiving through the end of life .
22.
Penrod, J., Hupcey, J.E., Loeb, S.J., Spigelmyer, P., Shipley, P., Baney, B. ( 2010, March). In J. Penrod (Chair), Supporting Family Care giver through End-of-Life Transitions: Opened Doors and Missed Opportunities. Symposium conducted at the Eastern Nursing Research Society 22nd Annual Scientific Sessions, Providence, RI.
23.
Radunovic, A., Mitsumoto, H., & Leigh, P.N. ( 2007). Clinical care of patients with amyotrophic lateral sclerosis . Lancet Neurology, 6, 913-925.
24.
Robinson, L., Nuamah, I.F., Cooley, M.E., & McCorkle, R. ( 1997). A test of the fit between the Corbin and Strauss Trajectory Model and care provided to older patients after cancer surgery. Holistic Nursing Practice, 12(1), 36-47.
25.
Schubart, J.R., Kinzie, M.B., & Farace, E. ( 2008). Caring for the brain tumor patient: Family caregiver burden and unmet needs. Neuro-Oncology, 10(1), 61-72.
26.
Simmons, Z. ( 2005). Management strategies for patients with amyotrophic lateral sclerosis from diagnosis through death. Neurologist, 11, 257-270.
27.
Stake, R.E. ( 1995). The art of case study research. Thousand Oaks, CA: Sage.
28.
Steinhauser, K.E., Christakis, M.A., & Clippo, E.C. ( 2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. The Journal of the American Medical Association, 284, 2476-2482.
29.
Waldrop, D.P., Kramer, B.J., Skretny, J.A., Milch, R.A., & Finn, W. ( 2005). Final transitions: Family caregiving at the end of life . Journal of Palliative Medicine, 8, 623-638.
