The Future as a Series of Transitions: Qualitative Study of Heart Failure Patients and Their Informal Caregivers

Journal of General Internal Medicine

Volumn 30, Issue 2, 2015, Pages 176-182

  Jones, Jacqueline ^a   Nowels, Carolyn T ^b,c   Sudore, Rebecca ^d,e   Ahluwalia, Sangeeta ^f   Bekelman, David B ^b,c  

^a UNIVERSITY OF COLORADO   (United States)

^b UNIVERSITY OF COLORADO SCHOOL OF MEDICINE   (United States)

^c DEPARTMENT OF VETERANS AFFAIRS   (United States)

^d UNIVERSITY OF CALIFORNIA   (United States)

^e SAN FRANCISCO VETERANS AFFAIRS MEDICAL CENTER   (United States)

^f OREGON STATE UNIVERSITY   (United States)

Author keywords

advance care planning; decision making; palliative care; patient centered care; transitions

Indexed keywords

ADULT; AGED; ARTICLE; ATTITUDE TO DEATH; CARDIAC PATIENT; CAREGIVER; CHANGE THEORY; CLINICAL ARTICLE; CROSS-SECTIONAL STUDY; FEMALE; FUTUROLOGY; HEALTH CARE SYSTEM; HEALTH STATUS; HEART FAILURE; HUMAN; MALE; MEDICAL RECORD REVIEW; MIDDLE AGED; NARRATIVE; NEW YORK HEART ASSOCIATION CLASS; PATIENT CARE; PSYCHOTRAUMA; QUALITATIVE ANALYSIS; QUALITATIVE RESEARCH; QUALITY OF LIFE; RETROSPECTIVE STUDY; SEMI STRUCTURED INTERVIEW; FORECASTING; STANDARDS; TRENDS; VERY ELDERLY;

ADULT; AGED; AGED, 80 AND OVER; CAREGIVERS; CROSS-SECTIONAL STUDIES; FEMALE; FORECASTING; HEART FAILURE; HUMANS; MALE; MIDDLE AGED; QUALITATIVE RESEARCH;

EID: 84925461374     PISSN: 08848734     EISSN: 15251497     Source Type: Journal    
DOI: 10.1007/s11606-014-3085-5     Document Type: Article

References (31)

1. Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153(4):256–61.
2. McMahan R, Knight SJ, Fried TR. Sudore RL Advance care planning beyond Advance Directives: perspectives from patients and surrogates. J Pain Symptom Manage. 2013;46(3):355–65.
3. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, Third Edition. Available at: http://www.nationalconsensusproject.org. Accessed October 21, 2014
4. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387–92.
5. Ahluwalia SC, Levin JR, Lorenz KA, Gordon HS. “There’s no cure for this condition”: How physicians discuss advance care planning in heart failure. Patient Edu Couns. 2013;91:200–2005.
6. Bekelman DB, Nowels CT, Retrum JH, et al. Giving voice to patients’ and family caregivers’ needs in chronic heart failure: implications for palliative care programs. J Palliat Med. 2011;14:1317–24.
7. Jones J, McDermott C, Nowels C, Matlock D, Bekelman D. The experience of fatigue as a distressing symptom of heart failure. Heart & Lung. 2012;41(5):484–91.
8. Charmaz K. Stories of suffering: Subjective tales and research narratives. Qual Health Res. 1999;9(3):362–82.
9. Allen LA, Yager JE, Funk MJ, et al.Discordance between patient-predicted and model-predicted life expectancy among ambulatory patients with heart failure. JAMA. 2008;299(21):2533–42.
10. Boyd KJ, Murray SA, Kendall M, Worth A, Benton TF, Clausen H. Living with advanced heart failure: a prospective, community based study of patients and their carers. Eur J Heart Fail. 2004;6:585–59.
11. Selman L, Harding R, Benyon T, et al. Improving end-of-life care for patients with chronic heart failure: “Let’s hope it’ll get better, when I know in my heart of hearts it won’t.”. Heart. 2007;93:963–7.
12. Arthur PH, Caldwell HM, Demers C. Preferences for patients with heart failure for prognosis communication. Can J Cardiol. 2007;23(10):791–6.
13. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–82.
14. Dougherty CM, Pyper GP, Au DH, Levy WC, Sullivan MD. Drifting in a shrinking future: living with advanced heart failure. J Cardiovasc Nurs. 2007;22(6):480–7.
15. De Ridder D, Geenen R, Kuijer R, van Middendorp H. Psychological adjustment to chronic disease. Lancet. 2008;372:246–55.
16. Sharpe L, Curran L. Understanding the process of adjustment to illness. Soc Sci Med. 2006;62:1153–66.
17. Institute of Medicine. 2001 Crossing the quality chasm. Available at: http://iom.edu/Reports/2001/Crossing-the-quality-chasm-a-new-health-system-for-the-21st-century.aspx. Accessed October 21, 2014.
18. ATLAS.ti 6.2. 2008; Berlin: Scientific software development.
19. Maxwell JA. Qualitative research design: An interactive approach. 3rd ed. Thousand Oaks, CA: Sage Publications; 2013.
20. Richards L, Morse JM. Read me first for a user’s guide to Qualitative Methods. 3rd ed. Thousand Oaks, CA: Sage Publications; 2013.
21. Saldana J. The coding manual for qualitative researchers. 2nd ed. London, UK: Sage Publications; 2013.
22. Davidson PM, Dracup K, Phillips J, Padilia G, Daly J. Maintaining hope in transition: A theoretical framework to guide interventions for people with heart failure. J Cardiovasc Nurs. 2007;22(1):58–64.
23. Meleis AI, Sawyer LM, Im EO, Hilfinger M, DeAnne K, Shumacher K. Experiencing transitions: An emerging middle range theory. ANS Adv Nurs Sci. 2000;23(1):12–28.
24. Kralik D, Visentin K, van Loon A. Transition: A literature review. J Adv Nurs. 2006;55(3):320–9.
25. Charmaz K. Good Days, Bad days: The Self in Chronic Illness and Time. New Brunswick: NJ Rutgers University Press; 1991.
26. Mishel MH. Reconceptualization of the uncertainty in illness theory. J Nurs Scholarsh. 1990;22(4):256–62.
27. Mishel MH, Germino BB, Gil KM, et al. Benefits from an uncertainty management intervention for African-American and Caucasian older long-term breast cancer survivors. Psychooncology. 2005;14(11):962–78.
28. Kurita K, Garon EB, Stanton AL. Meyerowitz BE Uncertainty and psychological adjustment in patients with lung cancer. Psychooncology. 2013;22:1396–1401.
29. Mauro AMP. Long-term follow-up study of uncertainty and psychosocial adjustment among implantable Cardioverter defibrillator recipients. Int J Nurs Stud. 2010;47:1080–88.
30. Waterworth S, Jorgensen D. It’s not just about heart failure—voices of older people in transition to dependence and death. Health Soc Care Community. 2010;18(2):199–207.
31. Tulsky JA. Beyond advanced directives: importance of communication skills at the end of life. JAMA. 2005;294(3):359–65.