Hostname: page-component-586b7cd67f-r5fsc Total loading time: 0 Render date: 2024-11-20T17:45:45.914Z Has data issue: false hasContentIssue false
  • English
  • Français

The communication experiences of patients with palliative care needs: A systematic review and meta-synthesis of qualitative findings

Published online by Cambridge University Press:  02 May 2014

Craig D. Murray ,
Claire McDonald  and
Heather Atkin
Craig D. Murray*
Affiliation:
School of Health and Medicine, Lancaster University, Lancaster, United Kingdom
Claire McDonald
Affiliation:
School of Health and Medicine, Lancaster University, Lancaster, United Kingdom
Heather Atkin
Affiliation:
Cumbria Partnership NHS Foundation Trust, Cumbria, United Kingdom
*
Address correspondence and reprint requests to: Craig Murray, School of Health and Medicine, Lancaster University, Lancaster LA1 4YG, United Kingdom. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Optimal communication is essential in ensuring that the palliative care needs of patients are met. This continues to be an area of concern for healthcare providers. The goal of our present review was to gain a deeper understanding of the communication experiences of patients with palliative care needs that have been identified within the qualitative literature.

Method:

A systematic search for qualitative research papers was undertaken in February of 2012. Five databases (ASSIA, CINAHL, MEDLINE, PsychArticles, and PsychINFO) were searched using the search terms [“palliative care” OR “terminal care” OR “end of life care”] AND [“experience” OR “perspective” OR “qualitative” OR “interview”] AND [“patients” OR “clients” OR “service-user”]. Meta-synthesis was conducted on the data within the found papers.

Results:

A line-of-argument synthesis of 15 studies yielded four overarching themes: talking—facilitating and inhibiting factors; the importance of humanitarian qualities within communication encounters; perceptions of autonomy within communication experiences; and individual differences in preferences for honesty within interactions.

Significance of results:

Our findings are discussed in relation to existing literature and offer a deeper insight into the communication experiences of this clinical population. A number of clinical implications are offered for the healthcare professionals who are providing support to patients with palliative care needs.

Keywords

CommunicationMeta-synthesisPalliative careQualitativePatients
Type
Review Article
Information
Palliative & Supportive Care , Volume 13 , Issue 2 , April 2015 , pp. 369 - 383
Copyright
Copyright © Cambridge University Press 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Aspinal, F., Addington-Hall, J., Hughes, R., et al. (2003). Using satisfaction to measure the quality of palliative care: A review of the literature. Journal of Advanced Nursing, 42, 324–339.Google Scholar
Bolmsjo, I. (2000). Existential issues in palliative care: Interviews with cancer patients. Journal of Palliative Care, 16, 20–24.Google Scholar
Bostrom, B., Sandh, M., Lundberg, D., et al. (2004). Cancer-related pain in palliative care: Patients' perceptions of pain management. Journal of Advanced Nursing, 45, 410–419.Google Scholar
Britten, N., Campbell, R., Pope, C., et al. (2002). Using meta-ethnography to synthesize qualitative research: A worked example. Journal of Health Services Research & Policy, 7, 209–215.Google Scholar
Clayton, J.M., Hancock, K., Parker, S., et al. (2008). Sustaining hope when communicating with terminally ill patients and their families: A systematic review. Psycho-Oncology, 17, 641–659.Google Scholar
Clover, A., Browne, J., McErlain, P., et al. (2004). Patient approaches to clinical conversations in the palliative care setting. Journal of Advanced Nursing, 48, 333–341.Google Scholar
Conner, A., Allport, S., Dixon, J., et al. (2008). Patient perspective: What do palliative care patients think about their care? International Journal of Palliative Nursing, 14, 546–552.Google Scholar
Dare, F. (2009). The high cost of nurses' communication challenges. Cisco survey report. Available from http://www.cisco.com/web/strategy/docs/healthcare/Nurses_Survey_Report.pdf.Google Scholar
Darzi, A. (2008). High quality care for all: NHS next stage review. London: Department of Health. Available from http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_085828.pdf.Google Scholar
Department of Health. (2009). End of Life Strategy: Quality Measures for End of Life Care. London: Department of Health.Google Scholar
Dixon, L., Maddock, C. & Wilcox, K. (2009). Challenges to communication. In Palliative care in neurological disease: A team approach. Byrne, J. et al. (eds.), pp. 71–84. Oxon: Radcliffe.Google Scholar
Doane, G.H. & Varcoe, C. (2007). Relational practice and nursing obligations. Advances in Nursing Science, 30, 192–205.Google Scholar
Doumit, M.A.A., Huijer, H.A.-S. & Kelley, J.H. (2007). The lived experience of Lebanese oncology patients receiving palliative care. European Journal of Oncology Nursing, 11, 309–319.Google Scholar
Dzul-Church, V., Cimino, J. W., Adler, S.R., et al. (2010). I'm sitting here by myself: Experiences of patients with serious illness at an urban public hospital. Journal of Palliative Medicine, 13, 695–701.Google Scholar
Epstein, R.M. & Street, R.L. Jr. (2007). Patient-centered communication in cancer care: Promoting healing and reducing suffering. Bethesda, MD: National Cancer Institute, NIH Publication No. 07-6225. Available from http://outcomes.cancer.gov/areas/pcc/communication/pcc_monograph.pdf.Google Scholar
Friedrichsen, M.J., Strang, P.M. & Carlsson, M.E. (2002). Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment. Palliative Medicine, 16, 323–330.Google Scholar
Friedrichsen, M., Linholm, A. & Milberg, A. (2011). Experiences of truth disclosure in terminally ill cancer patients in palliative home care. Palliative & Supportive Care, 9, 173–180.Google Scholar
Gattellari, M., Voigt, K.J., Butow, P.N., et al. (2002). When the treatment goal is not cure: Are cancer patients equipped to make informed decisions? Journal of Clinical Oncology, 20, 503–513.Google Scholar
Glaser, B.G. & Strauss, A.L. (1965). Awareness of dying. Aldine: Chicago.Google Scholar
Gwyther, L. & Krakauer, E. (2009). Worldwide Palliative Care Alliance: Policy statement on defining palliative care. Available from http://www.thewpca.org/resources/.Google Scholar
Hancock, K.Clayton, J.M., Parker, S.M., et al. , (2007). Truth-telling in discussing prognosis in advanced life-limiting illnesses: A systematic review. Palliative Medicine, 21, 507–517.Google Scholar
Jarrett, N. (2009). Patients' experiences of inter- and intra-professional communication (IIPC) in the specialist care context. International Journal on Disability and Human Development, 8, 51–58.Google Scholar
Jensen, L.A. &, Allen, M.N. (1996). Meta-synthesis of qualitative findings. Qualitative Health Research, 6, 553–60.Google Scholar
Kennett, C. & Payne, M. (2005) Understanding why palliative care patients “like day care” and “getting out.” Journal of Palliative Care, 21, 292–298.Google Scholar
Kennett, C. & Payne, M. (2010). Palliative care patients' experiences of healthcare treatment. International Journal of Social Welfare, 19, 262–271.Google Scholar
Langegard, U. & Ahlberg, K. (2009). Consolation in conjunction with incurable cancer. Oncology Nursing Forum, 36, E99–E106.Google Scholar
Langley-Evans, A. & Payne, S. (1997). Light-hearted death talk in a palliative day care context. Journal of Advanced Nursing, 26, 1091–1097.Google Scholar
Larkin, P.J., de Casterlé, B.D. & Schotsman, P. (2007). Transition towards end of life in palliative care: An exploration of its meaning for advanced cancer patients in Europe. Journal of Palliative Care, 23, 69–79.Google Scholar
Malpass, A., Shaw, A., Sharp, D., et al. (2009). “Medication career” or “moral career”? The two sides of managing antidepressants: A meta-ethnography of patients' experience of antidepressants. Social Science & Medicine, 68, 154–168.Google Scholar
Mannix, K.A., Blackburn, I.M., Garland, A., et al. , (2006). Effectiveness of brief training in cognitive behaviour therapy techniques for palliative care practitioners. Palliative Medicine, 20, 579–584.Google Scholar
McGrath, P. (2004). Affirming the connection: Comparative findings on communication issues from hospice patients and haematology survivors. Death Studies, 28, 829–848.Google Scholar
Moore, P.M., Wilkinson, S.S.M. & Rivera Mercado, S. (2004). Communication skills training for healthcare professionals working with cancer patients, their families and/or carers. Cochrane Database of Systematic Reviews, Issue 2. doi: 10.1002/14651858.CD003751.pub2.Google Scholar
National Health Service (NHS) (2010). National End of Life Care Programme. Preferred priorities for care. Leicester: NHS. Available from http://www.endoflifecareforadults.nhs.uk/eolc/ppc.htm.Google Scholar
National Institute for Clinical Excellence (NICE). (2004). Improving Supportive And Palliative Care for Adults with Cancer. London: National Institute for Clinical Excellence.Google Scholar
Noblit, G. & Hare, R. (1988). Meta-ethnography: Synthesizing qualitative studies. Newbury: Sage.Google Scholar
Parker, S., Clayton, J.M., Hancock, K., et al. (2006). A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content, style, and timing of information. Journal of Pain and Symptom Management, 34, 81–93.Google Scholar
Pautex, S., Herrmann, F.R. & Zulian, G. (2008). Factors associated with falls in patients with cancer hospitalized for palliative care. Journal of Palliative Medicine, 11(6), 878–884.Google Scholar
Pollak, K.I., Arnold, R.M., Jeffreys, A.S., et al. (2007). Oncologist communication about emotion during visits with patients with advanced cancer. Journal of Clinical Oncology, 25, 5748–52.Google Scholar
Public Health Resource Unit (2006). Critical Appraisal Skills Programme (CASP). Available from http://www.casp-uk.net/wp-content/uploads/2011/11/CASP_Qualitative_Appraisal_Checklist_14oct10.pdf.Google Scholar
Reid, B., Sinclair, M., Barr, O., et al. (2009). A meta-synthesis of pregnant women's decision-making processes with regard to antenatal screening for Down syndrome. Social Science & Medicine, 69, 1561–1573.Google Scholar
Richardson, J. (2002). Health promotion in palliative care: The patients' perception of therapeutic interaction with the palliative nurse in the primary care setting. Journal of Advanced Nursing, 40, 432–440.Google Scholar
Roberts, S.J., Krouse, H.J. & Michaud, P. (1995). Negotiated and non-negotiated nurse–patient interactions. Clinical Nursing Research, 4(1), 67–78.Google Scholar
Rodin, G., Zimmermann, C., Mayer, C., et al. (2009). Clinician–patient communication: Evidence-based recommendations to guide practice in cancer. Current Oncology, 16, 42–49.Google Scholar
Russell, S.J.F. & Russell, R.E.K. (2007). Advocacy and palliative care. In Ethical issues in palliative care. Webb, P. (ed.), pp. 63–68. Oxon: Radcliffe.Google Scholar
Sage, N., Sowdon, M., Cholton, E., et al. (2008). CBT for chronic illness and palliative care: A workbook and toolkit. Chichester: John Wiley & Sons.Google Scholar
Sandelowski, M. & Barroso, J. (2007). Handbook for synthesising qualitative research. New York: Springer.Google Scholar
Sandelowski, M., Docherty, S. & Emden, C. (1997). Qualitative metasynthesis: Issues and techniques. Research in Nursing & Health, 20, 365–371.Google Scholar
Schreiber, R., Crooks, D. & Stern, P. (1997). Qualitative meta-analysis. In Completing a qualitative project: Details and dialogue. Morse, J. (ed.), pp. 311–236. Thousand Oaks: Sage.Google Scholar
Scott, P.A. (1999). Autonomy, power, and control in palliative care. Cambridge Quarterly of Healthcare Ethics, 8, 139–147.Google Scholar
Seymour, J.E. (2001). Critical moments: Death and dying in intensive care. Buckingham: Open University Press.Google Scholar
Skilbeck, J.K. & Payne, S. (2005). End of life care: A discursive analysis of specialist palliative care nursing. Journal of Advanced Nursing, 51, 325–334.Google Scholar
Slort, W., Schweitzer, B.P.M., Blankenstein, A.H., et al. (2011). Perceived barriers and facilitators for general practitioner/patient communication in palliative care: A systematic review. Palliative Medicine, 25, 613–629.Google Scholar
Small, N. & Rhodes, P. (2000). Too ill to talk: User involvement in palliative care. Routledge: London.Google Scholar
Stajduhar, K.I., Thorne, S.E., McGuinness, L.M., et al. (2010). Patient perceptions of helpful communication in the context of advanced cancer. Journal of Clinical Nursing, 19, 2039–2047.Google Scholar
Stanley, R. (2005). Advocacy in palliative care. In Ethical issues in palliative care, 2nd ed.Webb, P. (ed.), pp. 63–81. Oxon: Radcliffe.Google Scholar
Stroebe, M.S. & Schut, H. (1999). The dual process model of coping with bereavement: Rationale and description. Death Studies, 23, 197–224.Google Scholar
Swarbrick, P., Grinyer, A. & Payne, S. (2011). When a hospice is not a haven. Progress in Palliative Care, 19, 22–24.Google Scholar
Tattersall, M.H., Gattellari, M., Voigt, K., et al. (2002) When the treatment goal is not cure: Are patients informed adequately? Supportive Care in Cancer, 10, 314–321.Google Scholar
Thorne, S., Jensen, L., Kearney, M., et al. (2004). Qualitative meta-synthesis: Reflections on methodological orientation and ideological agenda. Qualitative Health Research, 6, 1342–1365.Google Scholar
Walsh, D. & Downe, S. (2005). Meta-synthesis method for qualitative research: A literature review. Journal of Advanced Nursing, 50, 204–211.Google Scholar
Weiner, J.S., Arnold, R.M., Curtis, J.R., et al. (2006). Manualised communication interventions to enhance palliative care research and training: Rigorous, testable approaches. Journal of Palliative Medicine, 9, 371–381.Google Scholar
World Health Organization (2002). National cancer control programmes: Policies and managerial guidelines. Geneva: World Health Organization.Google Scholar
World Health Organization (2004). National cancer control programmes: Policies and managerial guidelines. Geneva: World Health Organization.Google Scholar
World Health Organisation (WHO). (2011). Palliative care for Older People: Better Practices. Copenhagen: World Health Organisation.Google Scholar
Yardley, S.J., Walshe, C.E. & Parr, A. (2009). Improving training in spiritual care: A qualitative study exploring patient perceptions of professional educational requirements, Palliative Medicine, 23, 601–607.Google Scholar