Archives
Nurses’ Experiences of Clinical Use of a Quality of Life Instrument in Palliative Care
Carina Lundh Hagelin
Karolinska Institute Research and Development Unit, Stockholms Sjukhem Foundation; Department of Oncology-Pathology, Karonlinska Institute, Stockholm, Sweden
Yvonne Wengström
Institution of Neurobiology, Caring Sciences & Society, Section of Nursing, Karolinska Institute, Stockholm, Sweden
Carol Tishelman
Professor of Nursing, Karolinska Institute, Sjukhem Foundation; Dept of Learning, Informatics, Mgmt & Ethics, Karolinska Institute, Stockholm, Sweden; School of Nursing, Midwifery & Social Work, University of Manchester, United Kingdom
Carl Johan Fürst
Research & Development Unit, Stockholms Sjukhem Foundation; Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden
Abstract
This pilot study explored how nursing staff experienced clinical use of a quality of life (QoL) instrument as complement to their standard assessment interview. Twenty-six of 36 Registered Nurses working in one palliative care service responded in writing to 6 open questions.
We found that nurses described positive features in using the QoL instrument related to how it supported their professional role, eased therapeutic contact with patients, and in terms of the outcomes of its use. Others noted difficulties incorporating the tool into the framework of their traditional nursing assessment, noting instrument and situation-specific limitations, with attitudes and comfort with the questionnaire affecting its use.
Clinical use of QoL tools may be facilitated by emphasizing their role as a first screening assessment, and acknowledging and supporting the importance of clinical expertise and the patient-nurse relationship in further more focussed assessments and nursing care.
Keywords
palliative care, nursing, self-assessment questionnaire, quality of life, qualitative research
References
Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JCJM, Kaasa S, Klee M, Osoba D, Razavi D, Rofe PB, Schraub S, Sneeuw KC, Sullivan M and Takeda F (1993) The EORTC QLQ-C30: a quality of life instrument for use in international clinical trials in oncology, Journal of the National Cancer Institute 85(5): 365-376.
Annells M and Koch T (2001) 'The real stuff': implications for nursing of assessing and measuring a terminally ill person's quality of life, Journal of Clinical Nursing 10(6): 806-812.
Aspinal F, Hughes R, Dunckley M and Addington-Hall J (2006) What is important to measure in the last months and weeks of life? A modified nominal group study, International Journal of Nursing Studies 43(4): 393-403.
Bergman B, Sullivan M and Sorenson S (1992) Quality of life during chemotherapy for small cell lung cancer II. A longitudinal study of the EORTC Core Quality of Life Questionnaire and comparison with the Sickness Impact Profile, Acta Oncologica 31(1): 19-28.
Bjordal K (2004) Impact of quality of life measurement in daily clinical practice, Annals of Oncology 15(Supplement 4): iv279-282.
Darmer MR, Ankersen L, Nielsen BG, Landberger G, Lippert E and Egerod I (2006) Nursing documentation audit - the effect of a VIPS implementation programme in Denmark, Journal of Clinical Nursing 15(5): 525-534.
Detmar SB, Muller MJ, Schornagel JH, Wever LD and Aaronson NK (2002) Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial, The Journal of the American Medical Association 288(23): 3027-3034.
Donaldson MS (2004) Taking stock of health-related quality-of-life measurement in oncology practice in the United States, Journal of the National Cancer Institute Monographs (33): 155-167.
Dunckley M, Aspinal F, Addington-Hall JM, Hughes R and Higginson IJ (2005) A research study to identify facilitators and barriers to outcome measure implementation, International Journal of Palliative Nursing 11(5): 218-225.
Ehrenberg A, Ehnfors M and Thorell-Ekstrand I (1996) Nursing documentation in patient records: experience of the use of the VIPS model. Journal of Advanced Nursing 24(4): 853-867.
Ferrell B and Coyle N (eds) (2001) Textbook of Palliative Nursing, Oxford University Press, Incorporate, New York.
Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A and West PJ (2002) A model to guide patient and family care: based on nationally accepted principles and norms of practice, Journal of Pain and Symptom Management 24(2): 106-123.
Frost MH, Bonomi AE, Cappelleri JC, Schunemann HJ, Moynihan TJ and Aaronson NK (2007) Applying quality-of-life data formally and systematically into clinical practice, Mayo Clinic Proceedings 82(10): 1214-1228.
Graneheim UH and Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness, Nurse Education Today 24(2): 105-112.
Homsi J, Walsh D, Rivera N, Rybicki LA, Nelson KA, Legrand SB, Davis M, Naughton M, Gvozdjan D and Pham H (2006) Symptom evaluation in palliative medicine: patient report vs systematic assessment, Supportive Care in Cancer 14(5): 444-453.
Hughes R, Aspinal F, Addington-Hall J, Chidgey J, Drescher U, Dunckley M and Higginson IJ (2003) Professionals' views and experiences of using outcome measures in palliative care, International Journal of Palliative Nursing 9(6): 234-238.
Kaasa S, Bjordal K, Aaronson N, Moum T, Wist E, Hagen S and Kvikstad A (1995) The EORTC core quality of life questionnaire (QLQ-C30): validity and reliability when analysed with patients treated with palliative radiotherapy, European Journal of Cancer 31A(13-14): 2260-2263.
King CR (2006) Advances in how clinical nurses can evaluate and improve quality of life for individuals with cancer, Oncology Nursing Forum 33(1 Suppl): 5-12.
Lundh Hagelin C, Seiger Å and Fürst CJ (2006) Quality of life in terminal care-with special reference to age, gender and marital status, Supportive Care in Cancer 14(4): 320-328.
McGrath P, Moore A, McNaught M, Palmer G, Greene A and Atkinson D (2005) Another form to fill in! Clients' reflections on the hospice use of questionnaires, Supportive Care in Cancer 13(9): 691-701.
McGrath P and Phillips E (2007) Making them more vulnerable: nursing insights on the irony of using questionnaires, Nursing Forum 42(2): 65-72.
McKee C and Bowles N (1998) An evaluation of humanism as a philosophy for nursing practice in an era of rational-scientific health care, in McMahon R and Pearson A (eds) Nursing As Therapy 2nd edn, pp.2001-2216, Stanley Thornes Ltd, Cheltenham.
McMahon R and Pearson A (1998) Nursing As Therapy 2nd edn, Stanley Thornes Ltd. Cheltenham.
Muir CJ, McDonagh A and Gooding N (2002) Assessment issues. Multidimensional patient assessment. In Berger AM, Portenoy RK and Weissman DE (eds) Principles and Practice of Palliative Care and Supportive Oncology 2nd edn, pp.653-660, Lippincott Williams & Wilkins, Philadelphia.
Pearce C and Lugton J (1999) Holistic assessment of patients' and relatives' needs. In Lugton J and Kindlen (eds) Palliative Care: The Nursing Role, pp.61-87, Churchill Livingstone, Edinburgh.
Randall F and Downie RS (2006) The Philosophy of Palliative Care, Oxford University Press, Oxford.
Sepulveda C, Marlin A, Yoshida T and Ullrich A (2002) Palliative Care: the World Health Organization's global perspective, Journal of Pain and Symptom Management 24(2): 91-96.
Soni MK and Cella D (2002) Quality of life and symptom measures in oncology: an overview, The American Journal of Managed Care 8(18 Suppl): S560-573.
Stokke TA and Kalfoss MH (1999) Structure and content in Norwegian nursing care documentation, Scandinavian Journal of Caring Sciences 13(1): 18-25.
Taylor B, Bulmer B, Hill L, Luxford C, McFarlane J, Reed J and Stirling K (2002) Exploring idealism in palliative nursing care through reflective practice and action research, International Journal of Palliative Nursing 8(7): 324-330.
Thorn S, Reimer Kirkland S and O´Flynn-Magee K (2004) The Analytic Challenge in Interpretive Description, International Journal of Qualitative Methods 3(1): 1-21.
Waardenburg R, Lundström S and Fürst CJ (2007) A global question to assess changes in symptom experience in end of life care - a pilot study, Unpublished manuscript. Stockholms Sjukhem Foundation, Karolinska Intitutet and University of Nijmegen, Stockholm and Nijmegen.
Watanabe S, McKinnon S, Macmillan K and Hanson J (2006) Palliative care nurses' perceptions of the Edmonton Symptom Assessment Scale: a pilot survey, International Journal of Palliative Nursing 12(3): 111-114.
Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM and Selby PJ (2004) Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial, Journal of Clinical Oncology 22(4): 714-724.
World Health Organisation (WHO) (1990) Cancer pain relief and palliative care. Report of a WHO Expert Committee, World Health Organ Technical report series, 804: 1-75.
World Health Organisation (WHO) (2002) National Cancer Control Programmes. Policies and Behavioural Guidlines, WHO, Geneva, accessed at http://www.who.int/cancer/media/en/408.pdf on 2 December 2007.
Vignaroli E and Bruera E (2006) Multidimensional assessment in palliative care. In Bruera E, Higginson IJ, Rapamonti C and von Gunten C (eds) Textbook of palliative medicine, pp.319-332, Edward Arnold Ltd, London.
World Medical Association (WMA) (2004) World Medical Association Declaration of Helsinki, accessed at http://www.wma.net/e/policy/b3.htm on 19 May 2007.
eContent Home