Psychosocial Care for the Caregivers of Primary Malignant Brain Tumor Patients

Journal of Social Work in End-of-Life and Palliative Care

Volumn 9, Issue 1, 2013, Pages 74-95

  Wasner, Maria ^a,b   Paal, Piret ^a   Borasio, Gian Domenico ^c  

^a LUDWIG MAXIMILIANS UNIVERSITY   (Germany)

^b University of Applied Science   (Germany)

^c LAUSANNE UNIVERSITY HOSPITAL   (Switzerland)

Author keywords

burden of care; communication; empathy; family; primary brain tumor; quality of life; support

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; ARTICLE; BRAIN TUMOR; CAREGIVER; COST OF ILLNESS; FEMALE; GERMANY; HUMAN; HUMAN RELATION; MALE; MENTAL STRESS; MIDDLE AGED; NEEDS ASSESSMENT; PATIENT CARE; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; QUALITY OF LIFE; SOCIAL SUPPORT; SOCIAL WORK; VERBAL COMMUNICATION; VERY ELDERLY;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; AGED, 80 AND OVER; BRAIN NEOPLASMS; CAREGIVERS; COST OF ILLNESS; FEMALE; GERMANY; HUMANS; MALE; MIDDLE AGED; NARRATION; NEEDS ASSESSMENT; PATIENT CARE TEAM; PROFESSIONAL-FAMILY RELATIONS; QUALITATIVE RESEARCH; QUALITY OF LIFE; SOCIAL SUPPORT; SOCIAL WORK; STRESS, PSYCHOLOGICAL;

EID: 84874490205     PISSN: 15524256     EISSN: 15524264     Source Type: Journal    
DOI: 10.1080/15524256.2012.758605     Document Type: Article

References (38)

1. Anderson, R. (2007). Thematic content analysis (TCA): Descriptive presentation of qualitative data. Retrieved fromhttp://www.wellknowingconsulting.org/publications/pdfs/ThematicContentAnalysis.pdf
2. Andersson, M., Ekwall, A. K., Hallberg, I. R., & Edberg, A. K. (2010). The experience of being next of kin to an older person in the last phase of life. Palliative & Supportive Care, 8 (1), 17-26.
3. Beresford, P. A., Adshead, L., & Croft, S. (2007). Palliative care, social work and service users: Making life possible. London, United Kingdom: Jessica Kingsley.
4. Bingley, A. F., Thomas, C., Brown, J., Reeve, J., & Payne, S. (2008). Developing narrative research in supportive and palliative care: The focus on illness narratives. Palliative Medicine, 22 (5), 653-658.
5. Catt, S., Chalmers, A., & Fallowfield, L. (2008). Psychosocial and supportive-care needs in high-grade glioma. Lancet Oncology, 9 (9), 884-891.
6. Chakrabarti, I., Cockburn, M., Cozen, W., Wang, Y.-P., & Preston-Martin, S. (2005). A population-based description of glioblastoma multiforme in Los Angeles County, 1974-1999. Cancer, 104 (12), 2798-2806.
7. Chow, M. Y., Quine, S., Li, M. (2010). The benefits of using a mixed methods approach-quantitative with qualitative-to identify client satisfaction and unmet needs in an HIV healthcare centre. AIDS Care, 22 (4), 491-498.
8. Coulter, A., & Cleary, P. D. (2001). Patients' experiences with hospital care in five countries. Health Affairs, 20 (3), 244-252.
9. Davies, E., & Higginson, I. J. (2003). Communication, information and support for adults with malignant cerebral glioma: A systematic literature review. Supportive Care in Cancer, 11 (1), 21-29.
10. de Graaff, F. M., Francke, A. L., van den Muijsenbergh, M. E. T. C., & van der Geest, S. (2010). "Palliative care": A contradiction in term? A qualitative study of cancer patients with a Turkish or Moroccan background, their relatives and care providers. BMC Palliative Care, 9(19), 1-14.
11. Del Vecchio Good, M.-J., Munakata, T., Kobayashi, Y., Mattingly, C., & Good B. J. (1994). Oncology and narrative time. Social Science & Medicine, 38 (6), 855-862.
12. Feichtner, C. (2005). Lebenszufriedenheit von tumorpatienten in der strahlentherapie [Life satisfaction of tumor patients in radiotherapy] (Doctoral dissertation). Retrieved fromhttp://edoc.ub.uni-muenchen.de/3362/
13. Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). "Mini-mental state."-A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189-198.
14. Funk, L., Stajduhar, K., Toye, C., Aoun, S., Grande, G., & Todd, C. (2010). Part 2: Home-based family caregiving at the end of life: A comprehensive review of published qualitative research (1998-2008). Palliative Medicine, 24 (6), 594-607.
15. Grande, G., Stajduhar, K., Aoun, S., Toye, C., Funk, L., Addington-Hall, J., Todd, C. (2009). Supporting lay carers in end-of-life care: Current gaps and future priorities. Palliative Medicine, 23 (4), 339-344.
16. Gräßel, E., Chiu, T., & Oliver, R. (2003). Development and validation of the Burden Scale for Family Caregivers (BSFC). Toronto, ON, Canada: Comprehensive Rehabilitation and Mental Health Services.
17. Hickey, A. M., Bury, G., O'Boyle, C. A., Bradley, F., O'Kelly, F. D., & Shannon, W. (1996). A new short form individual quality of life measure (SEIQoL-DW): Application in a cohort of individuals with HIV/AIDS. British Medical Journal, 313 (7048), 29-33.
18. Hojat, M., Gonnella, J. S., Nasca, T. J., Mangione, S., Vergare, M., & Magee, M. (2002). Physician empathy: Definition, components, measurement, and relationship to gender and specialty. American Journal of Psychiatry, 159 (9), 1563-1569.
19. Hollan, D., & Throop, C. J. (2008). Whatever happened to empathy? Introduction. Ethos, 36 (4), 385-401.
20. Janda, M., Steginga, S., Dunn, J., Langbecker, D., Walker, D., & Eakin, E. (2008). Unmet supportive care needs and interest in services among patients with a brain tumour and their carers. Patient Education & Counseling, 71 (2), 251-258.
21. Karnofsky, D. A., & Burchenal, J. H. (1949). The clinical evaluation of chemotherapeutic agents in cancer. In C. M. MacLeod (Ed.), Evaluation of chemotherapeutic agents, (p. 169). New York, NY: Columbia University Press.
22. Khalili, Y. (2007). Ongoing transitions: The impact of a malignant brain tumour on patient and family. Axone, 28(3), 5-13.
23. Linendoll, N. M. (2008). Family caregivers' perceived symptom distress of persons with a primary malignant brain tumor (Doctoral dissertation, Boston College). Retrieved from http://dcollections.bc.edu/R/?func=dbin-jump full&object_id= 71446&local_base=GEN01
24. Mattingly, C. (2008). Reading minds and telling tales in a cultural borderland. Ethos, 36(1), 136-154.
25. Muñoz, C., Juarez, G., Muñoz, M. L., Portnow, J., Fineman, I., Badie, B., Ferrell, B. (2008). The quality of life of patients with malignant gliomas and their caregivers. Social Work in Health Care, 47(4), 455-478.
26. Neudert, C., Wasner, M., & Borasio, G. D. (2004). Individual quality of life is not related with health-related quality of life of physical function in patients with amytropic lateral sclerosis. Journal of Palliative Medicine, 7(4), 551-557.
27. Ownsworth, T., Henderson, L., & Chambers, S. K. (2010). Social support buffers the impact of functional impairments on caregiver psychological well-being in the context of brain tumor and other cancers. Psycho-Oncology, 19(10), 1116-1122.
28. Payne, S., Hudson, P., Grande, G., Oliviere, D., Tishelman, C., Pleschberger, S., Kerr, C. (2010). White paper on improving support for family carers in palliative care. European Journal of Palliative Care, 17(5), 238-290.
29. Rolls, E., & Payne, S. (2008). What is the value of narrative research as a form of enquiry in palliative care nursing? International Journal of Palliative Nursing, 14(12), 576-577.
30. Salander P. (2010). Facilitating interventions and/or relationships in malignant brain tumors. Advances in Therapy, 27(1), 17-27.
31. Salander, P., & Spetz, A. (2002). How do patients and spouses deal with the serious facts of malignant glioma? Palliative Medicine, 16(4), 305-313.
32. Schubart, J. R., Kinzie, M. B., & Farace, E. (2008). Caring for the brain tumor patient: Family caregiver burden and unmet needs. Neuro-Oncology, 10(1), 61-72.
33. Sherwood, P. R., Donovan, H. S., Given, C. W., Lu, X., Given, B. A., Hricik, A., & Bradley, S. (2008). Predictors of employment and lost hours from work in cancer caregivers. Psycho-Oncology, 17(6), 598605.
34. Sorrell, J. M., & Butler, F. R. (2009). Telling life stories. Journal of Psychosocial Nursing& Mental Health Services, 47(11), 21-25.
35. Stajduhar, K., Funk, L., Toye, C., Grande, G., Aoun, S., & Todd, C. (2010). Part 1: Home-based family caregiving at the end-of-life: A comprehensive review of published quantitative research (1998-2008). Palliative Medicine, 24(6), 573-593.
36. Stajduhar, K. I., Martin, W., & Cairns, M. (2010). What makes grief difficult? Perspectives from bereaved family caregivers and healthcare providers of advanced cancer patients. Palliative & Supportive Care, 8(3), 277-289.
37. Stanley, P., & Hurst, M. (2011). Narrative palliative care: A method for building empathy. Journal of Social Work in End of Life & Palliative Care, 7(1), 39-55.
38. Zigmond, A. S., & Snaith, R. P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361-370.