Patients' preferences in palliative care: A systematic mixed studies review

Palliative Medicine

Volumn 29, Issue 5, 2015, Pages 399-419

  Sandsdalen, Tuva ^a,b   Hov, Reidun ^a   Høye, Sevald ^a   Rystedt, Ingrid ^b   Wilde Larsson, Bodil ^a,b  

^a INLAND NORWAY UNIVERSITY OF APPLIED SCIENCES   (Norway)

^b KARLSTAD UNIVERSITY   (Sweden)

Author keywords

palliative care; Patient preference; quality of healthcare; review; systematic mixed studies review

Indexed keywords

CLINICAL RESEARCH; DATA ANALYSIS; ENVIRONMENTAL FACTOR; HEALTH CARE PERSONNEL; HUMAN; MEDICAL LITERATURE; PALLIATIVE THERAPY; PATIENT CARE; PATIENT PREFERENCE; REVIEW; SUPPORT GROUP; SYSTEMATIC REVIEW; THEMATIC ANALYSIS; TREATMENT RESPONSE; HEALTH SERVICE; ORGANIZATION AND MANAGEMENT;

HEALTH SERVICES NEEDS AND DEMAND; HUMANS; PALLIATIVE CARE; PATIENT PREFERENCE; PATIENT-CENTERED CARE;

EID: 84929165151     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216314557882     Document Type: Review

References (74)

1. White paper on standards and norms for hospice and palliative care in Europe: part 1-recommendations from the European Association for Palliative Care. Eur J Palliat Care. 2009; 16: 278-289
2. The solid facts: palliative care. Davies E Higginson IJ, ed. Geneva: WHO; 2004: 33.
3. Connell T, Fernandez RS, Griffiths R, et al. Perceptions of the impact of health-care services provided to palliative care clients and their carers. Int J Palliat Nurs. 2010; 16: 274-284
4. Werkander Harstäde C, Andershed B. Good palliative care: how and where? The patients' opinions. J Hosp Palliat Nurs. 2004; 6: 27-35
5. Spichiger E. Patients' and families' experience of their relationship with professional healthcare providers in hospital end-of-life care: an interpretive phenomenological study. J Hosp Palliat Nurs. 2010; 12: 194-202
6. Goldschmidt D, Schmidt L, Krasnik A, et al. Expectations to and evaluation of a palliative home-care team as seen by patients and carers. Support Care Cancer. 2006; 14: 1232-1240
7. Murray SA, Boyd K, Kendall M, et al. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ. 2002; 325: 929-932
8. Ek K, Sahlberg-Blom E, Andershed B, et al. Struggling to retain living space: patients' stories about living with advanced chronic obstructive pulmonary disease. J Adv Nurs. 2011; 67: 1480-1490
9. Giles S, Miyasaki J. Palliative stage Parkinson's disease: patient and family experiences of health-care services. Palliat Med. 2009; 23: 120-512
10. Payne S, Burton C, Addington-Hall J, et al. End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families. Palliat Med. 2010; 24: 146-153
11. Wollin JA, Yates PM, Kristjanson LJ. Supportive and palliative care needs identified by multiple sclerosis patients and their families. Int J Palliat Nurs. 2006; 12: 20-26
12. Spichiger E. Being in the hospital: an interpretive phenomenological study of terminally ill cancer patients' experiences. Eur J Oncol Nurs. 2009; 13: 16-21
13. Strohbuecker B, Eisenmann Y, Galushko M, et al. Palliative care needs of chronically ill nursing home residents in Germany: focusing on living, not dying. Int J Palliat Nurs. 2011; 17: 27-34
14. Swarbrick P, Grinyer A, Payne S. When a hospice is not a haven. Prog Palliat Care. 2011; 19: 22-24
15. White paper on standards and norms for hospice and palliative care in Europe: part 2-recommendations from the European Association for Palliative Care. Eur J Palliat Care. 2010; 17: 278-289
16. Krahn M, Naglie G. The next step in guideline development: incorporating patient preferences. JAMA. 2008; 300: 436-438
17. Grunfeld E, Urquhart R, Mykhalovskiy E, et al. Toward population-based indicators of quality end-of-life care: testing stakeholder agreement. Cancer. 2008; 112: 2301-2308
18. Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients' perspectives. JAMA. 1999; 281: 163-168
19. Wilde B, Starrin B, Larsson G, et al. Quality of care from a patient perspective: a grounded theory study. Scand J Caring Sci. 1993; 7: 113-120
20. Donabedian A The definition of quality and approaches to its assessment: explorations in quality assessment and monitoring. Ann Arbor, MI: Health Administration Press; 1980: 163.
21. Quality of care: a process for making strategic choices in health systems. Geneva: WHO; 2006: 38.
22. Henoch I, Lövgren M, Wilde-Larsson B, et al. Perception of quality of care: comparison of the views of patients' with lung cancer and their family members. J Clin Nurs. 2012; 21: 585-594
23. Stajduhar KI, Allan DE, Cohen SR, et al. Preferences for location of death of seriously ill hospitalized patients: perspectives from Canadian patients and their family caregivers. Palliat Med. 2008; 22: 85-88
24. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000; 284: 2476-2482
25. Bradley SE, Frizelle D, Johnson M. Patients' psychosocial experiences of attending Specialist Palliative Day Care: a systematic review. Palliat Med. 2011; 25: 210-228
26. Rigby J, Payne S, Froggatt K. What evidence is there about the specific environmental needs of older people who are near the end of life and are cared for in hospices or similar institutions? A literature review. Palliat Med. 2010; 24: 268-285
27. Brereton L, Gardiner C, Gott M, et al. The hospital environment for end of life care of older adults and their families: an integrative review. J Adv Nurs. 2012; 68: 981-993
28. Bélanger E, Rodríguez C, Groleau D. Shared decision-making in palliative care: a systematic mixed studies review using narrative synthesis. Palliat Med. 2011; 25: 242-261
29. Higginson IJ, Sen-Gupta GJA. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med. 2000; 3: 287-300
30. Ventura AD, Burney S, Brooker J, et al. Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers. Palliat Med. 2013;:
31. Davies E, Higginson IJ. Systematic review of specialist palliative day-care for adults with cancer. Support Care Cancer. 2005; 13: 607-627
32. Van Mechelen W, Aertgeerts B, De Ceulaer K, et al. Defining the palliative care patient: a systematic review. Palliat Med. 2013; 27: 197-208
33. Vig EK, Pearlman RA. Quality of life while dying: a qualitative study of terminally ill older men. J Am Geriatr Soc. 2003; 51: 1595-1601
34. National cancer control programmes: policies and managerial guidelines. Geneva: WHO; 2002:
35. Polit DF, Beck CT Nursing research: generating and assessing evidence for nursing practice. Philadelphia, PA: Wolters Kluwer Health; 2012: 802.
36. Sandelowski M, Voils CI, Barroso J. Defining and designing mixed research synthesis studies. Res Sch. 2006; 13: 29-44
37. Higgins JPT Green S (eds). Cochrane handbook for systematic reviews of interventions (Version 5.1.0, updated March2011). The Cochrane Collaboration, 2011, http://handbook.cochrane.org/(2011, accessed February 2014).
38. Moher D, Liberati A, Tetzlaff J, et al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med. 2009; 151: 264-269
39. Public Health Resources Unit. Critical Appraisal Skills Programme (CASP): making sense of evidence. 2006, http://www.casp-uk.net/
40. Nordström G Wilde-Larsson B. Assessment tool-quantitative studies (not RCT). Department of Health Science, Faculty of Health, Science and Technology, Karlstad University, 2006 (in Swedish) (unpublished).
41. Nordström G Wilde-Larsson B. Assessment tool-qualitative studies. Department of Health Science, Faculty of Health, Science and Technology, Karlstad University, 2006 (in Swedish) (unpublished).
42. Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs. 2005; 52: 546-553
43. Arablaster G, Brooks D, Hudson R, et al. Terminally ill patients' expectations of nurses. Aust J Adv Nurs. 1990; 7: 34-43
44. Ben Natan M, Garfinkel D, Shachar I. End-of-life needs as perceived by terminally ill older adult patients, family and staff. Eur J Oncol Nurs. 2010; 14: 299-303
45. Cawley D, Waterman D, Roberts D, et al. A qualitative study exploring perceptions and experiences of patients and clinicians of Palliative Medicine Outpatient Clinics in different settings. Palliat Med. 2011; 25: 52-61
46. Dale MJ, Johnston B. An exploration of the concerns of patients with inoperable lung cancer. Int J Palliat Nurs. 2011; 17: 285-290
47. De Vogel-Voogt E, Van der Heide A, Van Leeuwen AF, et al. Patient evaluation of end-of-life care. Palliat Med. 2007; 21: 243-248
48. Dzul-Church V, Cimino JW, Adler SR, et al. 'I'm sitting here by myself.. ': experiences of patients with serious illness at an urban public hospital. J Palliat Med. 2010; 13: 695-701
49. Gardner DS, Kramer BJ. End-of-life concerns and care preferences: congruence among terminally ill elders and their family caregivers. Omega. 2009; 60: 273-297
50. Gates MF, Lackey NR, White MR. Needs of hospice and clinic patients with cancer. Cancer Pract. 1995; 3: 226-232
51. Goodwin DM, Higginson IJ, Myers K, et al. What is palliative day care? A patient perspective of five UK services. Support Care Cancer. 2002; 10: 556-662
52. Grobe ME, Ahman D, Ilstrup DM. Needs assessment for advanced cancer patients and their families. Oncol Nurs Forum. 1982; 9: 26-30
53. Hanratty B, Addington-Hall J, Arthur A, et al. What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care. BMC Fam Pract. 2013; 14: 22-29
54. Heyland DK, Cook DJ, Rocker GM, et al. Defining priorities for improving end-of-life care in Canada. CMAJ. 2010; 182: E747-E752
55. Heyland DK, Dodek P, Rocker G, et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ. 2006; 174: 627-633
56. Rocker GM, Dodek PM, Heyland DK. Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: insights from a multicentre study. Can Respir J. 2008; 15: 249-254
57. Strachan PH, Ross H, Rocker GM, et al. Mind the gap: opportunities for improving end-of-life care for patients with advanced heart failure. Can J Cardiol. 2009; 25: 635-640
58. Hopkinson JB, Hallett CE. Patients' perceptions of hospice day care: a phenomenological study. Int J Nurs Stud. 2001; 38: 117-125
59. Janssen AL, MacLeod RD. What does care mean? Perceptions of people approaching the end of life. Palliat Support Care. 2010; 8: 433-440
60. Johnston B, Smith LN. Nurses' and patients' perceptions of expert palliative nursing care. J Adv Nurs. 2006; 54: 700-709
61. Kernohan WG, Hasson F, Hutchinson P, et al. Patient satisfaction with hospice day care. Support Care Cancer. 2006; 14: 462-468
62. Laakkonen ML, Pitkala KH, Strandberg TE. Terminally ill elderly patient's experiences, attitudes, and needs: a qualitative study. Omega. 2004; 49: 117-129
63. McDonnell MM. Patients' perceptions of their care at our Lady's Hospice, Dublin. Palliat Med. 1989; 3: 47-53
64. Miccinesi G, Bianchi E, Brunelli C, et al. End-of-life preferences in advanced cancer patients willing to discuss issues surrounding their terminal condition. Eur J Cancer Care. 2012; 21: 623-633
65. Tanaka A, Iwamoto T, Kaneyasu H, et al. Thoughts and feelings of in-patients with advanced terminal cancer: implications for terminal care improvement. Nurs Health Sci. 1999; 1: 189-193
66. Torke AM, Garas NS, Sexson W, et al. Medical care at the end of life: views of African American patients in an urban hospital. J Palliat Med. 2005; 8: 593-602
67. Yeung EWF, French P, Leung AOS. The impact of hospice inpatient care on the quality of life of patients terminally ill with cancer. Cancer Nurs. 1999; 22: 350-357
68. Kaasa S, Loge JH. Quality of life in palliative care: principles and practice. Palliat Med. 2003; 17: 11-20
69. Ternestedt B-M, Andershed B, Eriksson M, et al. A good death: development of a nursing model of care. J Hosp Palliat Nurs. 2002; 4: 153-160
70. Hermansson A, Ternestedt B. What do we know about the dying patient? Awareness as a means to improve palliative care. Med Law. 2000; 19: 335-344
71. Kleinman A The illness narratives: suffering, healing, and the human condition. New York: Basic Books, Inc.; 1988:
72. Brogaard T, Neergaard MA, Sokolowski I, et al. Congruence between preferred and actual place of care and death among Danish cancer patients. Palliat Med. 2013; 27: 155-164
73. Aoun S, Kristjanson LJ, Currow D, et al. Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs. Palliat Med. 2007; 21: 29-34
74. Sandelowski M, Voils CI, Barroso J. Comparability work and the management of difference in research synthesis studies. Soc Sci Med. 2007; 64: 236-247