A model of caregiving through the end of life: Seeking normal

Western Journal of Nursing Research

Volumn 34, Issue 2, 2012, Pages 174-193

  Penrod, Janice ^a   Hupcey, Judith E ^a   Shipley, Peggy Z ^a   Loeb, Susan J ^a   Baney, Brenda ^a  

^a PENN STATE COLLEGE OF MEDICINE   (United States)

Author keywords

end of life; family caregivers; grounded theory

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; ARTICLE; BEREAVEMENT; CAREGIVER; CLINICAL TRIAL; FEMALE; HOME CARE; HUMAN; MALE; MIDDLE AGED; MULTICENTER STUDY; PSYCHOLOGICAL ASPECT; PSYCHOLOGICAL MODEL; TERMINAL CARE; UNITED STATES;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; AGED, 80 AND OVER; BEREAVEMENT; CAREGIVERS; FEMALE; HOME NURSING; HUMANS; MALE; MIDDLE AGED; MODELS, PSYCHOLOGICAL; TERMINAL CARE; UNITED STATES;

EID: 84856920419     PISSN: 01939459     EISSN: 15528456     Source Type: Journal    
DOI: 10.1177/0193945911400920     Document Type: Article

References (45)

1. Al-Azri M.,Al-Awisi H.,Al-Moundhri M.Coping with a diagnosis of breast cancer-literature review and implications for developing countries.Breast Journal. 2009;15:615-622.
2. Aoun S.M.,Kristjanson L.J.,Currow D.C.,Hudson P.L.Caregiving for the terminally ill: At what cost?.Palliative Medicine. 2005;19:551-555.
3. Corbin J.M.The Corbin and Strauss chronic illness trajectory model: An update.Scholarly Inquiry for Nursing Practice. 1998;12:33-41.
4. Corbin J.M.,Strauss A.Unending work and care: Managing chronic illness at home. London, UK: Jossey-Bass; 1988:.
5. Corbin J.M.,Strauss A.A nursing model for chronic illness management based upon the trajectory framework.Scholarly Inquiry for Nursing Practice. 1991;5:155-174.
6. Physicians and family caregivers: A model for partnership.Journal of the American Medical Association. 1993;269:1282-1284.
7. Detmar S.B.,Aaronson N.K.,Wever L.D.,Muller M.,Schornagel J.H.How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality-of-life issues.Journal of Clinical Oncology. 2000;18:3295-3301.
8. Detmar S.B.,Muller M.J.,Wever L.D.,Schornagel J.H.,Aaronson N.K.The patient-physician relationship. Patient-physician communication during outpatient palliative treatment visits: An observational study.Journal of the American Medical Association. 2001;285:1351-1357.
9. Ellis A.,Harper R.A.A new guide to rational living. Englewood Cliffs, NJ: Prentice Institute for Rational Living Incorporated; 1975:.
10. Emanuel E.J.,Fairclough D.L.,Slutsman J.,Emanuel L.L.Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers.Annals of Internal Medicine. 2000;132:451-459.
11. Ferrell B.R.The impact of pain on quality of life: A decade of research.Nursing Clinics of North America. 1995;30:609-624.
12. Fromme E.K.,Drach L.L.,Tolle S.W.,Ebert P.,Miller P.,Perrin N.,Tilden V.Men as caregivers at end of life.Journal of Palliative Medicine. 2005;8:1167-1175.
13. Glaser B.G.Theoretical sensitivity. Mill Valley, CA: The Sociology Press; 1978:.
14. Glaser B.G.,Strauss A.L.Awareness of dying. Chicago, IL: Aldine; 1965:.
15. Glaser B.G.,Strauss A.L.The discovery of grounded theory. Chicago, IL: Aldine; 1967:.
16. Grande G.,Stajduhar K.,Aoun S.,Toye C.,Funk L.,Addington-Hall J.,Todd C.Supporting lay carers in end of life care: Current gaps and future priorities.Palliative Medicine. 2009;23:339-344.
17. Hanratty B.,Holland P.,Jacoby A.,Whitehead M.Financial stress and strain associated with terminal cancer: A review of the evidence.Palliative Medicine. 2007;21:595-607.
18. Harding R.,Higginson I.J.What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness.Palliative Medicine. 2003;17:63-74.
19. Hauser J.M.,Kramer B.J.Family caregivers in palliative care.Clinics in Geriatric Medicine. 2004;20:671-688.
20. Hebert R.S.,Schulz R.Caregiving at the end of life.Journal of Palliative Medicine. 2006;9:1174-1187.
21. Kim Y.,Given B.A.Quality of life of family caregivers of cancer survivors: Across the trajectory of the illness.Cancer. 2008;112:2556-2568.
22. Levesque L.,Ducharme F.,Zarit S.,Lachance L.,Giroux F.Predicting longitudinal patterns of psychological distress in older husband caregivers: Further analysis of existing data.Aging & Mental Health. 2008;12:333-342.
23. Lincoln Y.S.,Guba E.G.Naturalistic inquiry. London, UK: SAGE; 1985:.
24. Lowder J.L.,Buzney S.J.,Buzo A.M.The caregiver balancing act: Giving too much or not enough.Care Management Journals. 2005;6:159-165.
25. Lunney J.R.,Lynn J.,Foley D.J.,Lipson S.,Guralnik J.M.Patterns of functional decline at the end of life.Journal of the American Medical Association. 2003;289:2387-2392.
26. Lunney J.R.,Lynn J.,Hogan C.Profiles of older Medicare decedents.Journal of the American Geriatric Society. 2002;50:1108-1112.
27. Lynn J.Perspectives on the care at the close of life: Serving patients who may die soon and their families: The role of hospice and other services.Journal of the American Medical Association. 2001;285:925-932.
28. Martinez-Devesa P.,Waddell A.,Perera R.,Theodoulou M.Cognitive behavioral therapy for tinnitus.Cochrane Database of Systematic Reviews. 2007;1:CD005233.
29. McMillan S.C.Interventions to facilitate family caregiving at the end of life.Journal of Palliative Medicine. 2005;8:S-132-S-139.
30. Men as caregivers: Theory research and service implications. Kramer B.J.Thompson B.H., ed. New York, NY: Springer; 2002:3-19.
31. Development of the NHPCO research agenda.Journal of Pain and Symptom Management. 2004;28:488-496.
32. National Institutes of Health. (2004). State of the science conference statement: Improving end-of-life care, final report. Bethesda, MD: Author. Retrieved from http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm.
33. Navaie-Waliser M.,Feldman P.H.,Gould D.A.,Levine C.,Kuerbis A.N.,Donelan K.When the caregiver needs care: The plight of vulnerable caregivers.American Journal of Public Health. 2002;92:409-413.
34. Penrod J.,Hupcey J.E.,Baney B.L.,Loeb S.End of life caregiving trajectories.Clinical Nursing Research. 2011;20:7-24.
35. Rabow M.W.,Hauser J.M.,Adams J.Supporting family caregivers at the end of life: "They don't know what they don't know".Journal of the American Medical Association. 2004;291:483-491.
36. Rhee Y.,Degenholtz H.,Lo Sasso A.T.,Emanuel L.L.Estimating the quantity and economic value of family caregiving for community-dwelling older persons in the last year of life.Journal of American Geriatrics Society. 2009;57:1654-1659.
37. Schulz R.,Beach S.R.Caregiving as a risk factor for mortality: The caregiver health effects study.Journal of the American Medical Association. 1999;282:2215-2219.
38. Schulz R.,Martire L.M.Family caregiving of persons with dementia: Prevalence, health effects, and support strategies.American Journal of Geriatric Psychiatry. 2004;12:240-249.
39. Schumacher K.L.,Stewart B.J.,Archbold P.G.,Dodd M.J.,Dibble S.L.Family caregiving skill: Development of the concept.Research in Nursing & Health. 2000;23:191-203.
40. Soothill K.,Morris S.M.,Harman J.,Francis B.J.,Thomas C.,McIllmurray B.Informal carers of cancer patients: What are their unmet social needs?.Health and Social Care in the Community. 2001;9:464-475.
41. Sorrell J.M.Caring for the caregivers.Journal of Psychosocial Nursing. 2007;45:17-20.
42. Stajduhar K.I.Examining the perspectives of family members involved in the delivery of palliative care at home.Journal of Palliative Care. 2003;19:27-35.
43. Waldrop D.P.,Kramer B.J.,Skretny J.A.,Milch R.A.,Finn W.Final transitions: Family caregiving at the end of life.Journal of Palliative Medicine. 2005;8:623-638.
44. Weitzner M.A.,Haley W.E.,Chen H.The family caregiver of the older cancer patient.Hematology/Oncology Clinics of North America. 2000;14:269-281.
45. Zivin K.,Christakis N.A.The emotional toll of spousal morbidity and mortality.American Journal of Geriatric Psychiatry. 2007;15:772-779.