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Supportive care needs of people with brain tumours and their carers

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Abstract

Goals of work

The diagnosis and treatment of a brain tumour may result in long-term changes in a patient’s functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers.

Materials and methods

Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers.

Main results

Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy.

Conclusions

Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.

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References

  1. Adelbratt S, Strang P (2000) Death anxiety in brain tumour patients and their spouses. Palliat Med 14:499–507

    Article  PubMed  CAS  Google Scholar 

  2. AIHW, AACR (2004) Cancer in Australia 2001 (AIHW cat. no. CAN 23.). AIHW, Canberra

  3. Baade P, Coory M, Ring I (2000) National health priority cancers in Queensland (1982–1997). Brisbane, Australia

  4. Barr JM (2003) Providing support for patients with brain tumours and their families. Australas J Neurosci 16:12–14

    Google Scholar 

  5. Broadstock MJ, Hill D (1997) Evaluation and impact of promotion of a cancer helpline to cancer patients through their specialists. Patient Educ Couns 32:141–146

    Article  PubMed  CAS  Google Scholar 

  6. Cox K, Wilson E (2003) Follow-up for people with cancer: nurse-led services and telephone interventions. J Adv Nurs 43:51–61

    Article  PubMed  Google Scholar 

  7. Curren JR (2001) Support needs of brain tumour patients and their carers: the place of a telephone service. Int J Palliat Nurs 7:331–337

    PubMed  CAS  Google Scholar 

  8. Davies E (1997) Patient’s perceptions of follow-up services. In: Davies E, Hopkins A (eds) Improving care for patients with malignant cerebral glioma. RCP, London, pp 81–91

    Google Scholar 

  9. Davies E, Hall S, Clarke C (2003) Two year survival after malignant cerebral glioma: patient and relative reports of handicap, psychiatric symptoms and rehabilitation. Disabil Rehabil 25:259–266

    Article  PubMed  CAS  Google Scholar 

  10. Davies E, Higginson IJ (2003) Communication, information and support for adults with malignant cerebral glioma: a systematic literature review. Support Care Cancer 11:21–29

    PubMed  Google Scholar 

  11. Davies E, Hopkins A (1997) Good practice in the management of adults with malignant cerebral glioma: clinical guidelines. Working group, Royal College of Physicians. Br J Neurosurg 11:318–330

    Article  PubMed  CAS  Google Scholar 

  12. Durity MB, Wyness A, Durity F, Ratel M (2000) Codman award paper. Education and information needs identified by patients and key family members prior to surgery for a skull base neoplasm: implications for practice. Axon 22:32–45

    PubMed  CAS  Google Scholar 

  13. Edvardsson T, Ahlstrom G (2005) Illness-related problems and coping among persons with low-grade glioma. Psychooncology 14:728–737

    Article  PubMed  Google Scholar 

  14. Ergh TC, Hanks RA, Rapport LJ, Coleman RD (2003) Social support moderates caregiver life satisfaction following traumatic brain injury. J Clin Exp Neuropsychol 25:1090–1101

    Article  PubMed  Google Scholar 

  15. Glover A (2003) An exploration of the extent to which attending Headway enhances quality of life after traumatic brain injury. Disabil Rehabil 25:750–760

    Article  PubMed  CAS  Google Scholar 

  16. Grossman SA, Batara JF (2004) Current management of glioblastoma multiforme. Semin Oncol 31:635–644

    Article  PubMed  CAS  Google Scholar 

  17. Horowitz S, Passik SD, Malkin MG (1996) “In sickness and in health”: a group intervention for spouses caring for patients with brain tumours. J Psychosoc Oncol 14:43–56

    Article  Google Scholar 

  18. Kessler L, Fintor L, Muha C, Wun LM, Annett D, Mazan KD (1993) The Cancer Information Service Telephone Evaluation and Reporting System (CISTERS): a new tool for assessing quality assurance. J Natl Cancer Inst Monographs 61–65

  19. King AC, Brassington G (1997) Enhancing physical and psychological functioning in older family caregivers: the role of regular physical activity. Ann Behav Med 19:91–100

    PubMed  CAS  Google Scholar 

  20. Leavitt MB, Lamb SA, Voss BS (1996) Brain tumor support group: content themes and mechanisms of support. Oncol Nurs Forum 23:1247–1256

    PubMed  CAS  Google Scholar 

  21. Leboeuf I (2000) Impact of a family-centred approach on a couple living with a brain tumour: a case study. Axone 22:24–31

    PubMed  CAS  Google Scholar 

  22. Lechner L, De Vries H (1996) The Dutch cancer information helpline: experience and impact. Patient Educ Couns 28:149–157

    Article  PubMed  CAS  Google Scholar 

  23. Lepola I, Toljamo M, Aho R, Louet T (2001) Being a brain tumor patient: a descriptive study of patients’ experiences. J Neurosci Nurs 33:143–147

    PubMed  CAS  Google Scholar 

  24. Levin VA, Leibel SA, Gutin PH (2001) Neoplasms of the central nervous system. In: DeVita VT, Hellman S, Rosenberg SA (eds) Cancer: principle & practice of oncology, vol. 2. Lippinott Willimas & Wilkins, Philadelphia, pp 2100–2160

    Google Scholar 

  25. Main DS, Nowels CT, Cavender TA, Etschmaier M, Steiner JF (2005) A qualitative study of work and work return in cancer survivors. Psychooncology 14:992–1004

    Article  PubMed  Google Scholar 

  26. Marcus AC, Heimendinger J, Wolfe P, Fairclough D, Rimer BK, Morra M, Warnecke R, Himes JH, Darrow SL, Davis SW, Julesberg K, Slevin-Perocchia R, Steelman M, Wooldridge J (2001) A randomized trial of a brief intervention to increase fruit and vegetable intake: a replication study among callers to the CIS. Prev Med 33:204–216

    Article  PubMed  CAS  Google Scholar 

  27. Marcus AC, Heimendinger J, Wolfe P, Rimer BK, Morra M, Cox D, Lang PJ, Stengle W, Van Herle MP, Wagner D, Fairclough D, Hamilton L (1998) Increasing fruit and vegetable consumption among callers to the CIS: results from a randomized trial. Prev Med 27:S16–S28

    Article  PubMed  CAS  Google Scholar 

  28. McBride CM, Rimer BK (1999) Using the telephone to improve health behavior and health service delivery. Patient Educ Couns 37:3–18

    Article  PubMed  CAS  Google Scholar 

  29. McLendon RE, Halperin EC (2003) Is the long-term survival of patients with intracranial glioblastoma multiforme overstated? Cancer 98:1745–1748

    Article  PubMed  Google Scholar 

  30. Newton C, Mateo MA (1994) Uncertainty: strategies for patients with brain tumor and their family. Cancer Nurs 17:137–140

    Article  PubMed  CAS  Google Scholar 

  31. Pahlson A, Ek L, Ahlstrom G, Smits A (2003) Pitfalls in the assessment of disability in individuals with low-grade gliomas. J Neurooncol 65:149–158

    Article  PubMed  Google Scholar 

  32. Passik SD, Ricketts PL (1998) Central nervous system tumours. In: Holland JC (ed) Psycho-oncology. Oxford University Press, New York, pp 303–313

    Google Scholar 

  33. Paul F, Hendry C, Cabrelli L (2004) Meeting patient and relatives’ information needs upon transfer from an intensive care unit: the development and evaluation of an information booklet. J Clin Nurs 13:396–405

    Article  PubMed  Google Scholar 

  34. Pelletier G, Verhoef MJ, Khatri N, Hagen N (2002) Quality of life in brain tumor patients: the relative contributions of depression, fatigue, emotional distress, and existential issues. J Neurooncology 57:41–49

    Article  Google Scholar 

  35. Peterson K (2001) Brain tumors. Neurol Clin 19:887–902

    Article  PubMed  CAS  Google Scholar 

  36. Ritchie J, Spencer L, O’Connor W (2003) Carrying out qualitative analysis. In: Ritchie J, Lewis J (eds) Qualitative research practice. Sage, London, pp 219–262

    Google Scholar 

  37. Salander P (1996) Brain tumour as a threat to life and personality: the spouse’s perspective. J Psychosoc Oncol 14:1–18

    Article  Google Scholar 

  38. Salander P, Bergenheim AT, Hamberg K, Henriksson R (1999) Pathways from symptoms to medical care: a descriptive study of symptom development and obstacles to early diagnosis in brain tumour patients. Fam Pract 16:143–148

    Article  PubMed  CAS  Google Scholar 

  39. Salander P, Bergenheim AT, Henriksson R (2000) How was life after treatment of a malignant brain tumour? Soc Sci Med 51:589–598

    Article  PubMed  CAS  Google Scholar 

  40. Salander P, Spetz A (2002) How do patients and spouses deal with the serious facts of malignant glioma? Palliat Med 16:305–313

    Article  PubMed  Google Scholar 

  41. Sardell S, Sharpe G, Ashley S, Guerrero D, Brada M (2000) Evaluation of a nurse-led telephone clinic in the follow-up of patients with malignant glioma. Clin Oncol (R Coll Radiol) 12:36–41

    CAS  Google Scholar 

  42. Sherwood P, Given B, Given C, Schiffman R, Murman D, Lovely M (2004) Caregivers of persons with a brain tumor: a conceptual model. Nurs Inq 11:43–53

    Article  PubMed  Google Scholar 

  43. Sherwood PR, Given BA, Doorenbos AZ, Given CW (2004) Forgotten voices: lessons from bereaved caregivers of persons with a brain tumour. Int J Palliat Nurs 10:67–75

    PubMed  Google Scholar 

  44. Silver HJ, Wellman NS (2002) Nutrition education may reduce burden in family caregivers of older adults. J Nutr Educ Behav 34:S53–S58

    Article  PubMed  Google Scholar 

  45. Strang S, Strang P, Ternestedt BM (2001) Existential support in brain tumour patients and their spouses. Support Care Cancer 9:625–633

    Article  PubMed  CAS  Google Scholar 

  46. Walker DG, Kaye AH (2001) Diagnosis and management of astrocytomas, oligodendrogliomas and mixed gliomas: a review. Australas Radiol 45:472–482

    Article  PubMed  CAS  Google Scholar 

  47. Wyness MA, Durity MB, Durity F (2002) Narratives of patients with skull base tumors and their family members: lessons for nursing practice. Axone 24:18–35

    PubMed  Google Scholar 

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Correspondence to Monika Janda.

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Janda, M., Eakin, E.G., Bailey, L. et al. Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14, 1094–1103 (2006). https://doi.org/10.1007/s00520-006-0074-1

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  • DOI: https://doi.org/10.1007/s00520-006-0074-1

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