Overcoming the challenges of conducting research with people who have advanced heart failure and palliative care needs

European Journal of Cardiovascular Nursing

Volumn 11, Issue 2, 2012, Pages 248-254

  Fitzsimons, Donna ^a,b   Strachan, Patricia H ^c  

^a UNIVERSITY OF ULSTER   (United Kingdom)

^b BELFAST CITY HOSPITAL   (United Kingdom)

^c MCMASTER UNIVERSITY   (Canada)

Author keywords

Advanced heart failure; Ethical issues; Nursing; Palliative care; Research methods

Indexed keywords

CACHEXIA; CLINICAL PRACTICE; DECISION MAKING; HEALTH PRACTITIONER; HEART FAILURE; HEART LEFT VENTRICLE EJECTION FRACTION; HOSPITALIZATION; HUMAN; NURSING; PALLIATIVE THERAPY; PATIENT AUTONOMY; PRIORITY JOURNAL; REVIEW; SEMI STRUCTURED INTERVIEW; CLINICAL NURSING RESEARCH; ETHICS; METHODOLOGY;

CLINICAL NURSING RESEARCH; HEART FAILURE; HUMANS; PALLIATIVE CARE; SEVERITY OF ILLNESS INDEX;

EID: 79851513013     PISSN: 14745151     EISSN: 18731953     Source Type: Journal    
DOI: 10.1016/j.ejcnurse.2010.12.002     Document Type: Review

References (38)

1. Addington-Hall, J. Research sensitivities to palliative care needs. Eur J Cancer Care 2002; 11(220): 224.
2. Jaarsma, T, Beattie, JM, Ryder, M, Rutten, FH, McDonagh, T & Mohacsi, P et al. On behalf of the advanced Heart Failure Study Group of the HFA of the ESC. Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail 2009; 11: 433–443.
3. Goodin, SJ, Haupton, PJ, Arnold, R, Grady, K, Hershberger, R & Kutner, J et al. Consensus statement: palliative and supportive care in advanced heart failure J Card Fail 2004; 10(3): 200–209.
4. Chattoo, S & Atkin, KM. Extending specialist palliative care to people with heart failure: semantic, historical and practical limitations to policy guidelines. Soc Sci Med 2009; 69(2): 147–153.
5. Goodlin, SJ. Palliative care in congestive heart failure. J Am Coll Cardiol 2009; 54(5): 386–396.
6. Lorenz, KA, Lynn, J, Dy, SM, Shugarman, LR, Wilkinson, A & Mularski, RA et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med 2008; 148: 147–159.
7. Kendall, M, Harris, F, Boyd, K, Sheikh, A, Murray, SA & Brown, D et al. Key challenges and ways forward in researching the “good death”: qualitative in-depth interview and focus group study. BMJ 2007.
8. Whittemore, R & Knafl, K. The integrative review: updated methodology. Jour Adv Nurs 2005; 52(5): 546–553.
9. Heyland, DK, Dodek, P, Rocker, G, Groll, D, Gafni, A & Pichora, D et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ 2006; 174(5).
10. Willems, DL, Hak, A, Visser, F & van der Wal, G. Thoughts of patients with advanced heart failure on dying. Palliat Med 2004; 18: 564–572.
11. Strachan, PH, Ross, H, Rocker, GM, Dodek, PM & Heyland, DK. Mind the gap: opportunities for improving end-of-life care for patients with advanced heart failure. Can J Cardiol 2009; 25(11): 635–640.
12. Rabbow, MW & Dibble, SL. Ethnic differences in pain among outpatients with terminal end stage chronic illness. Pain Med 2005; 6(3): 235–241.
13. Selman, L, Harding, R, Beynon, T, Hodson, F, Coady, E & Hazeldine, C 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: 963–967.
14. Fromiga, F, Chivite, D, Ortega, C, Casas, S, Ramon, JM & Pujol, R. End-of-life preferences in elderly patients admitted for heart failure. Q J Med 2004; 97: 803–808.
15. Aldred, H, Gott, M & Gariballa, S. Advanced heart failure: impact on older patients and informal carers. 2005; J Adv Nurs 49(2): 116–124.
16. Arnold, JMO, Liu, P, Demers, C, Dorian, P, Giannetti, N & Haddad, H et al. Canadian Cardiovascular Society consensus conference recommendations on heart failure 2006: diagnosis and management. Can J Cardiol 2006; 22(1): 23–45.
17. Gott, M, Small, N, Barnes, S, Payne, S & Seamark, D. Older people’s views of a good death in heart failure: implications for palliative care provision. Soc S Med 2008; 67: 1113–1121.
18. Caldwell, PH, Arthur, HM & Demers, C. Preferences of patients with heart failure for prognosis communication. Can Journal Card 2007; 23(10): 791–796.
19. Harding, R, Beynon, T, Hodson, F, Coady, E, Kinirons, M & Selman, L et al. Provision of palliative care for chronic heart failure in patients: how much do we need?. BMC Palliat Care 2009; Retrieved November 10, 2009 from http://biomedcentral.com/1472-684X/8/8.
20. Bekelman, DB, Hutt, E, Masoudi, FA, Kutner, JS & Rumsfeld, JS. Defining the role of palliative care in older adults with heart failure. Int J Cardiol 2008; 125: 183–190.
21. Gott, M, Barnes, S, Parker, C, Payne, S, Seamark, D & Gariballa, S et al. Dying trajectories in heart failure. Palliat Med 2007; 21(2): 95–99.
22. Cowie, MR. Estimating prognosis in heart failure: time for a better approach. Heart 2003; 89(6): 587–588.
23. Aronow, WS. Epidemiology, pathophysiology, prognosis and treatment of systolic and diastolic heart failure. Cardiol Rev 2006; 14(3): 108–124.
24. O’Leary, N, Murphy, NF, O’Louglin, C, Tiernan, E & McDonald, K. A comparative study of the palliative care needs of heart failure and cancer patients. Eur J Heart Fail 2009; 11: 406–412.
25. Fitzsimons, D, Mullan, D, Wilson, JS, Conway, B, Corcoran, B & Dempster, M et al. The challenge of patients’ unmet palliative care needs in the final stages of chronic illness. Palliat Med 2007; 21: 313–322.
26. Boyd, KJ, Murray, SM, Dendal, M, Worth, A, Benton, TF & Clausen, H. Living with heart failure: a prospective community based study of patients and their carers. Eur J Heart Fail 2004; 6: 585–591.
27. Murray, SA, Kendall, M, Benton, TF & Clausen, H. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ 2002; 325: 929–932.
28. Dickstein, K, Cohen-Solal, A, Flippatos, G, McMurray, JJ, Ponikowski, P & Poole-Wilson, PA et al. ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure. Eur J Heart Fail 2008; 10: 933–989.
29. Moss, AH, Ganjoo, J, Sharma, S, Gansor, J, Senft, S & Weaner, B et al. Utility of the “surprise” question to identify dialysis patients with high mortality. Clin J Am Soc Nephrol 2008; 3: 1379–1384.
30. Horne, G & Payne, S. Removing the boundaries: palliative care for patients with heart failure. Palliat Med 2004; 18: 291–296.
31. Helft, PR. Necessary collusion: prognostic communication with advanced cancer patients. J Clin Oncol 2005; 23(13): 3146–3150.
32. Hupcey, JE, Penrod, J & Fogg, J. Heart failure and palliatve care: implications in practice. J Palliat Med 2009; 12(6): 531–536.
33. Goodlin, SJ, Quill, TE & Arnold, RM. Communication and decision-making about prognosis in heart failure care. J Card Fail 2008; 14(2): 106–113.
34. Bennet, SK & Sauve, MJ. Cognitive deficits in patients with heart failure. J Cardiovasc Nurs 2003; 18(3)219–242.
35. Pullicino, PM, Wadley, VG, McClure, LA, Safford, MM, Lazar, RM & Klapholz, M et al. Factors contributing to global cognitive impairment in heart failure: results from a population-based cohort. J Card Fail 14(4): 290–295.
36. Seamark, DA, Gilbert, J & Williams, SE. Are post bereavement research interviews distressing to carers? Lessons learned from palliative care. Palliat Med 2000; 14: 55–56.
37. Burns, N & Groves, SK. The practice of nursing research: conduct, critique and utilization. 4th ed. Philadelphia, USA: Saunders; 2001.
38. Munhall, PL. Nursing research: a qualitative perspective. 4th ed. Massachusetts, USA: Jones and Barlette; 2007