Treatment decision-making in cancer care: the role of the carer
Gill Hubbard
Authors: Gill Hubbard , PhD, MSc, BA, PBCE, Senior Research Fellow, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nicola Illingworth , PhD, BA, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Neneh Rowa-Dewar , MSc, BA, Pg.Dip, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Liz Forbat , PhD, BA, PGCert, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nora Kearney , MSc, RN, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK
Search for more papers by this authorNicola Illingworth
Authors: Gill Hubbard , PhD, MSc, BA, PBCE, Senior Research Fellow, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nicola Illingworth , PhD, BA, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Neneh Rowa-Dewar , MSc, BA, Pg.Dip, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Liz Forbat , PhD, BA, PGCert, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nora Kearney , MSc, RN, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK
Search for more papers by this authorNeneh Rowa-Dewar
Authors: Gill Hubbard , PhD, MSc, BA, PBCE, Senior Research Fellow, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nicola Illingworth , PhD, BA, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Neneh Rowa-Dewar , MSc, BA, Pg.Dip, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Liz Forbat , PhD, BA, PGCert, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nora Kearney , MSc, RN, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK
Search for more papers by this authorLiz Forbat
Authors: Gill Hubbard , PhD, MSc, BA, PBCE, Senior Research Fellow, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nicola Illingworth , PhD, BA, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Neneh Rowa-Dewar , MSc, BA, Pg.Dip, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Liz Forbat , PhD, BA, PGCert, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nora Kearney , MSc, RN, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK
Search for more papers by this authorNora Kearney
Authors: Gill Hubbard , PhD, MSc, BA, PBCE, Senior Research Fellow, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nicola Illingworth , PhD, BA, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Neneh Rowa-Dewar , MSc, BA, Pg.Dip, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Liz Forbat , PhD, BA, PGCert, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nora Kearney , MSc, RN, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK
Search for more papers by this authorGill Hubbard
Authors: Gill Hubbard , PhD, MSc, BA, PBCE, Senior Research Fellow, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nicola Illingworth , PhD, BA, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Neneh Rowa-Dewar , MSc, BA, Pg.Dip, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Liz Forbat , PhD, BA, PGCert, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nora Kearney , MSc, RN, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK
Search for more papers by this authorNicola Illingworth
Authors: Gill Hubbard , PhD, MSc, BA, PBCE, Senior Research Fellow, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nicola Illingworth , PhD, BA, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Neneh Rowa-Dewar , MSc, BA, Pg.Dip, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Liz Forbat , PhD, BA, PGCert, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nora Kearney , MSc, RN, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK
Search for more papers by this authorNeneh Rowa-Dewar
Authors: Gill Hubbard , PhD, MSc, BA, PBCE, Senior Research Fellow, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nicola Illingworth , PhD, BA, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Neneh Rowa-Dewar , MSc, BA, Pg.Dip, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Liz Forbat , PhD, BA, PGCert, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nora Kearney , MSc, RN, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK
Search for more papers by this authorLiz Forbat
Authors: Gill Hubbard , PhD, MSc, BA, PBCE, Senior Research Fellow, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nicola Illingworth , PhD, BA, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Neneh Rowa-Dewar , MSc, BA, Pg.Dip, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Liz Forbat , PhD, BA, PGCert, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nora Kearney , MSc, RN, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK
Search for more papers by this authorNora Kearney
Authors: Gill Hubbard , PhD, MSc, BA, PBCE, Senior Research Fellow, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nicola Illingworth , PhD, BA, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Neneh Rowa-Dewar , MSc, BA, Pg.Dip, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Liz Forbat , PhD, BA, PGCert, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Nora Kearney , MSc, RN, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK
Search for more papers by this authorAbstract
Aims and objectives. This study explores the role of the carer in treatment decision-making in cancer care.
Background. Literature about involvement in treatment decision-making tends to focus on patients and clinicians, with the carer rarely included. The absence of carers is problematic because the management of illness is often carried out in the context of complex networks of relationships. Although current policy encourages health care practitioners to work in partnership with family members, implementation is troubled by a lack of understanding of the significance of interpersonal relationships and interactions and the role of the relationship throughout the course of the illness experience. Despite awareness, there is little systematic, coherent analysis of the complexity of these interactional dynamics and, in particular, consideration of the implications for involvement and treatment decision-making.
Design. Qualitative, longitudinal.
Methods. Three serial semi-structured interviews with 66 patients and 43 carers within the first year following a diagnosis of cancer. A descriptive and thematic approach to data analysis was adopted.
Results. Carers are involved in treatment decision-making in cancer care and contribute to the involvement of patients through their actions during, before and after consultations with clinicians. Carers can act as conduits for information from patient to clinician and from clinician to patient. They can also act as facilitators during deliberations, helping patients to consider whether to have treatment or not and which treatment.
Conclusions. Our study has highlighted the deficiency of models that fail to acknowledge the role of the carer in the treatment decision-making process. We propose the adoption of a relational approach by the inclusion of the carer in conceptual frameworks and recommend triadic (patient, carer and professional) models of involvement.
Relevance to clinical practice. Cancer care clinicians should recognise and actively involve the carer as well as the patient in treatment decision-making.
References
-
Adams T (2008) Dementia Care Nursing. Palgrave/Macmillan, Basignstoke.
10.1007/978-0-230-58039-8 Google Scholar
- Australian Council for Safety and Quality in Health Care (2005) Partnerships for Health in Action: Promoting Consumer and Community Involvement in Health Care Improvement. Available at: http://www.safetyandquality.gov.au/internet/safety/publishing.nsf/content/c06811ad746228e9ca2571c600835dbb/$file/consumrept0705.pdf (accessed September 2007).
-
Caress A (2000) Review: healthcare decision aids improve knowledge, decrease decisional conflict and increase active participation.
Evidence-Based Nursing
3, 45.
10.1136/ebn.3.2.45 Google Scholar
- Charles C, Gafni A & Whelan T (1999) Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Social Science and Medicine 49, 651–661.
- Coulter A (1997) Partnerships with patients: the pros and cons of shared clinical decision-making. Journal of Health Services Research & Policy 2, 112–121.
- Department of Health (2001) The Expert Patient: A New Approach to Chronic Disease Management for The 21st Century. Department of Health, London, pp. 1–38.
- Department of Health (2006) Our Health, Our Care, Our Say: Making It Happen. Department of Health, London.
- Entwistle V & Watt IS (2006) Patient involvement in treatment decision-making: the case for a broader conceptual framework. Patient Education and Counseling 63, 268–278.
- Entwistle V, Prior M, Skea ZC & Francis JJ (2008) Involvement in treatment decision-making: its meaning to people with diabetes and implications for conceptualisation. Social Science and Medicine 66, 362–375.
- FDA (2005) Patient Representative Program, FDA. Available at: http://www.fda.gov/oashi/patrep/patientrep.html (accessed September 2007).
- Ferrario SR, Zotti AM, Massara GA & Nuvolone A (2002) A comparative assessment of psychological and psychosocial characteristics of cancer patients and their caregivers. Psycho-Oncology 12, 1–7.
-
Forbat L (2005) Talking About Care: Two Sides to the Story. The Policy Press, Bristol.
10.2307/j.ctt1t8926s Google Scholar
- Forbat L & Henderson J (2003) The Professionalization of Informal Carers? In The Future Health Workforce ( C Davies ed.). Palgrave, London, pp. 49–67.
- Fraenkel L & McGraw S (2007) Participation in medical decision making: the patients’ perspective. Medical Decision Making 27, 533–538.
- Friedman L, Kalidas M, Elledge R, Change J, Romero C, Hussain I, Dulay M & Liscum K (2006) Optimism, social support and psychosocial functioning among women with breast cancer. Psycho-Oncology 16, 1010–1018.
-
Ganz P (2007) Cancer Survivorship: Today and Tomorrow. Springer, New York.
10.1007/978-0-387-68265-5 Google Scholar
- General Medical Council (2007) Consent: Patients and Doctors Making Decisions Together: A Draft for Consultation. General Medical Council.
- Glaser BG & Strauss AL (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine Publishing Company, Chicago.
- Hardey M (1999) Doctor in the house: the internet as a source of lay health knowledge and the challenge to expertise. Sociology of Health & Illness 21, 82–835.
- Health Canada (2007) Our Policy. Available at: http://www.hc-sc.gc.ca/ahc-asc/public-consult/resource-centre-ressource/poli/index_e.html. (accessed September 2007).
- Hubbard G, Knighting K, Rowa-Dewar N, Forbat L, Illingworth N, Wilson M & Kearney N(2007) People’s Experiences of Cancer with the First Year Following Diagnosis. Final report., Cancer Care Research Centre, University of Stirling, Stirling.
- Hubbard G, Kidd L & Donaghy E (2008) Preferences for involvement in treatment decision-making of patients with cancer: a review of the literature. European Journal of Oncology Nursing 12, 299–318.
- Kendall M, Boyd K, Campbell C, Cormie P, Fife S, Thomas K, Weller D & Murray SA (2006) How do people with cancer wish to be cared for in primary care? Serial discussion groups of patients and carers. Family Practice 23, 644–650.
- Montori V, Gafni A & Charles C (2006) A shared treatment decision-making approach between patients with chronic conditions and their clinicians. The case of diabetes. Health Expectations 9, 25–36.
- Murray S & Sheikh A (2006) Serial interviews for patients with progressive diseases. Lancet 368, 901–902.
- National Institute for Health (2007) Public Involvement with NIH. Available at: http://www.nih.gov/about/publicinvolvement.htm (accessed September 2007).
- NICE (2004) Improving Supportive and Palliative Care for Adults with Cancer. Scottish Executive, Edinburgh.
- Scottish Executive(2003) Partnership for Care. Scottish Executive, Edinburgh.
- Scottish Executive (2005) A National Framework for Service Change in the NHS in Scotland. Building a Health Service Fit for the Future. Vol. 2: A guide for the NHS, Scottish Executive, Edinburgh.
- Scottish Executive (2006) Scottish Executive Response to Care 21 Report: The Future of Unpaid Care in Scotland. Scottish Executive, Edinburgh.
- Seymour J, Dix G & Eardley T (1995) Joint Accounts: Methodology and Practice in Research Interviews with Couples. Social Policy Research Unit, University of York, York.
-
Speice J,
Harkness J,
Laner I,
Frankel R,
Roter D &
Kornblith AB (2000) Involving family members in cancer care: focus group considerations of patients and oncological providers.
Psycho-Oncology
9, 101–112.
10.1002/(SICI)1099-1611(200003/04)9:2<101::AID-PON435>3.0.CO;2-D CAS PubMed Web of Science® Google Scholar
- Spira N & Kenemore E (2002) Cancer as a life transition: a relational approach to cancer wellness in women. Clinical Social Work Journal 30, 163–186.
- Sullivan M (2003) The new subjective medicine: taking the patient’s point of view on health care and health. Social Science and Medicine 56, 1595–1604.
- Thompson AGH (2007) The meaning of patient involvement and participation in health care consultations: a taxonomy. Social Science and Medicine 64, 1297–1310.
- Thomson C (2002) Public Consultation and the National Health and Medical Research Council, NHMRC, Canberra. Available at: http://www.nhmrc.gov.au/consult/_files/publco.pdf (accessed September 2007).
- Twigg J & Atkin K (1994) Carers Perceived. Policy and Practice in Informal Care. Open University Press, Buckingham.
- Williams SJ & Calnan M (1996) Medicine and the lay populace in late modernity. In Modern Medicine: Lay Perspectives and Experiences ( SJ Williams & M Calnan eds). UCL Press, London.
- Wright L & Leahey M (2000) Nurses and Families. A Guide to Family Assessment and Intervention. FA Davies Company, Philadelphia.
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