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Health care professionals' perspectives of living and dying with primary malignant glioma: Implications for a unique cancer trajectory

Published online by Cambridge University Press:  21 October 2013

Jennifer Philip ,
Anna Collins ,
Caroline A. Brand ,
Michelle Gold ,
Gaye Moore ,
Vijaya Sundararajan ,
Michael A. Murphy  and
Carrie Lethborg
Jennifer Philip
Affiliation:
Palliative Medicine and Centre for Palliative Care, St Vincent's Hospital Melbourne, Melbourne, Australia
Anna Collins*
Affiliation:
Centre for Palliative Care, St Vincent's Hospital Melbourne, Melbourne, Australia
Caroline A. Brand
Affiliation:
Melbourne EpiCentre, University of Melbourne and Melbourne Health, Melbourne, Australia Centre for Research Excellence in Patient Safety, Monash University, Melbourne, Australia
Michelle Gold
Affiliation:
Palliative Care Service Alfred Health, Melbourne, Australia
Gaye Moore
Affiliation:
Department of Psychiatry, St Vincent's Hospital, Melbourne, Australia
Vijaya Sundararajan
Affiliation:
Department of Medicine, University of Melbourne, St Vincent's Hospital, Melbourne, Australia
Michael A. Murphy
Affiliation:
Department of Neurosurgery, St Vincent's Hospital Melbourne, Melbourne, Australia
Carrie Lethborg
Affiliation:
Social Work Department, St Vincent's Hospital Melbourne, Melbourne, Australia
*
Address correspondence and reprint requests to: Anna Collins, Centre for Palliative Care, St Vincent's HospitalMelbourne PO Box 2900, Fitzroy VIC 3065Australia. E-mail: [email protected]
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Abstract

Objectives:

Health care professionals (HCPs) caring for people with primary malignant glioma (PMG) and their carers see many of the profound challenges facing this group, yet their perspectives are not documented. This study aimed to understand and document the unique perspective of HCPs in relation to the supportive and palliative care needs of patients with PMG and their carers, with a view to developing a model of care.

Methods:

Qualitative study involving semi-structured focus groups and interviews with 35 medical, nursing and allied health staff actively engaged in providing care for this patient group. Purposive and theoretical sampling from two major metropolitan hospitals and one community palliative care service in Australia was utilised to seek perspectives from a variety of disciplines and health care settings. Thematic analysis was conducted by three independent researchers, using a constant comparative method influenced by grounded theory.

Results:

Key themes relating to the needs of people with PMG which were apparent from the HCPs included: The difference in the illness course of glioma compared to other cancers; Limitations of current medical care; Challenges in balancing hope with reality of the illness; and Recommendations to improve care, including recognising the role of family and moving from a model where services are offered in response to demonstrated needs.

Significance of the results:

Current models of care based upon the classic cancer trajectory are unresponsive to the needs of people with PMG. Care may be enhanced by moving towards a proactive approach, extending the goals of care beyond medical needs and broadening the focus of care to include family needs.

Keywords

GliomaBrain tumourPalliative careSupportive careHealth care professionalsHealth Care QualityAccessEvaluation
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 6 , December 2015 , pp. 1519 - 1527
Copyright
Copyright © Cambridge University Press 2013 

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References

Arber, A., Faithfull, S., Plaskota, M., Lucas, C., & de Vries, K. (2010a). A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services. International Journal of Palliative Nursing, 16, 24–30.Google Scholar
Arber, A., Hutson, N., Guerrero, D., Wilson, S., Lucas, C., & Faithfull, S. (2010b). Carers of patients with a primary malignant brain tumour: Are their information needs being met? British Journal of Neuroscience Nursing, 6, 329–34.Google Scholar
Bradley, S., Sherwood, P.R., Donovan, H.S., et al. (2007). I could lose everything: understanding the cost of a brain tumor. Journal of Neuro-oncology, 85, 329–38.CrossRefGoogle ScholarPubMed
Collins, A., Lethborg, C., Brand, C., et al. (2013). The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices. BMJ Supportive and Palliative Care, doi:10.1136/bmjspcare-2012-000419.Google ScholarPubMed
Draucker, C.B., Martsolf, D.S., Ross, R., & Rusk, T.B. (2007). Theoretical Sampling and Category Development in Grounded Theory. Qualitative Health Research, 17, 1137–1148.Google Scholar
Ford, E., Catt, S., Chalmers, A., & Fallowfield, L. (2012). Systematic review of supportive care needs in patients with primary malignant brain tumors. Neuro Oncology, 14, 392–404.Google Scholar
Glaser, B. (1992). Basics of Grounded Theory Analysis. Sociology Press, Mill Valley, California.Google Scholar
Glaser, B. (1965). The Constant Comparative Method of Qualitative Analysis. in Social Problems. California: University of California Press; 1965.Google Scholar
Halkett, G., Lobb, E., Oldham, L., & Nowak, A. (2010). The information and support needs of patients diagnosed with high grade glioma. Patient Education and Counseling, 79, 112–19.Google Scholar
Lobb, E.A., Halkett, G.K., & Nowak, A.K. (2011). Patient and caregiver perceptions of communication of prognosis in high grade glioma. Journal of Neuro-oncology, 104, 315–22.Google Scholar
McConigley, R., Halkett, G., Lobb, E., & Nowak, A. (2010). Caring for someone with high-grade glioma: a time of rapid change for caregivers. Palliative Medicine, 24, 473–79.Google Scholar
Moore, G., Collins, A., Brand, C., et al. (2013). Palliative and supportive care needs of patients with high-grade glioma and their carers: A systematic review of qualitative literature. Patient Education and Counseling, 91, 141–153.Google Scholar
Murray, S.A., Kendall, M., Boyd, K., & Sheikh, A. (2005). Illness trajectories and palliative care. British Medical Journal, 330, 1007–11.Google Scholar
Seyama, R., & Kanda, K. (2010). The process by which families of glioblastoma patients come through emotional pain and prepare for hospice care. Journal of Hospice and Palliative Nursing, 12, 124–36.CrossRefGoogle Scholar
Schubart, J.R., Kinzie, M.B., & Farace, E. (2008). Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro Oncology, 10, 61–72.Google Scholar