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Cited by 41Cancer survivorship and careNursing care and researchPalliative and Oncologic Care

What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: a qualitative systematic review

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Paterson, C., Roberts, C., Li, J., Chapman, M., Strickland, K., Johnston, N., Law, E., Bacon, R. +4 more·2024·Journal of Cancer Survivorship
DOI 10.1007/s11764-023-01401-5PMC PMC10229398
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Abstract

Purpose: To critically synthesise qualitative research to understand experiences of supportive care in people affected by brain cancer and their informal caregivers. Methods: A qualitative systematic review was conducted according to the Joanna Briggs methodology and has been reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Guidelines. Electronic databases were searched by an expert systematic review librarian for all qualitative studies irrespective of research design. All publications were double screened by two reviewers using a pre-determined exclusion and inclusion criteria. The review was managed using Covidence systematic review software. Methodological quality assessment and data extraction were performed. Qualitative findings accompanied by illustrative quotes from included studies were extracted and grouped into categories, which created the overall synthesised findings. Results: A total of 33 studies were included which represented a total sample of 671 participants inclusive of 303 patients and 368 informal caregivers. There was a total of 220 individual findings included in this review, which were synthesised into two findings (1) caregivers and patients perceived supports which would have been helpful and (2) caregiver and patient experiences of unmet supportive care needs. Conclusion: This review highlighted the suffering and distress caused by brain cancer and associated treatments. Both patients and their informal caregivers experienced disconnect from themselves in renegotiating roles, and a profound sense of loneliness as the physical deterioration of the disease progressed. Both patients and informal caregivers reported similar unmet needs within the current service provision for brain cancer. However, what is apparent is that current cancer services are provided solely for patients, with little or no consideration to the support needs of both the patient and their informal caregiver. Service re-design is needed to improve care coordination with individualised informational support, implementation of holistic needs assessments for both the patients and their caregivers, better community support provision, improved opportunities for emotional care with early referral for palliative care services. Implications for cancer survivors: It is recommended that members of the multidisciplinary brain cancer team reflect on these findings to target holistic needs assessments and develop shared self-management care plans for both the patient and the informal caregiver.

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  • Across brain cancer more broadly, qualitative synthesis indicates that supportive care experiences are shaped by persistent informational, psychosocial, and practical unmet needs for both patients and informal caregivers, with gaps spanning communication, access to services, and navigation of palliative and rehabilitation resources.

    “Across brain cancer more broadly, qualitative synthesis indicates that supportive care experiences are shaped by persistent informational, psychosocial, and practical unmet needs for both patients and informal caregivers, with gaps spanning communication, access to services, and navigation of palliative and rehabilitation resources.15”

    From Caregiver burden, quality of life, and psychosocial outcomes among informal caregivers of patients with glioma: A systematic review and meta-analysis (2026) · cites this paper as [15]

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  • Caregiver burden and QoL are core outcomes in glioma care, reflecting both the intensity of caregiving tasks and the broader psychosocial ecology in which caregiving occurs.

    “Collectively, these data suggest that caregiver burden and QoL are core outcomes in glioma care, reflecting both the intensity of caregiving tasks and the broader psychosocial ecology in which caregiving occurs.15”

    From Caregiver burden, quality of life, and psychosocial outcomes among informal caregivers of patients with glioma: A systematic review and meta-analysis (2026) · cites this paper as [15]

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References 57 · Cited by 41

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  1. [2]Che W, Ma W, Lyu J, Wang X. Socioeconomic status and adult gliomas mortality risk: an observational study based on SEER data. World Neurosurg. 2021;155:e131–41. 34403798 · DOI
  2. [3]Stupp R, Mason WP, Van Den Bent MJ, et al. Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma. N Engl J Med. 2005;352(10):987–96. 15758009 · DOI · Paper page
  3. [4]Fortin D, Iorio-Morin C, Tellier A, Goffaux P, Descoteaux M, Whittingstall K. High-grade gliomas located in the right hemisphere are associated with worse quality of life. World Neurosurg. 2021;149:e721–8. 33540090 · DOI
  4. [5]Daigle K, Fortin D, Mathieu D, et al. Effects of surgical resection on the evolution of quality of life in newly diagnosed patients with glioblastoma: a report on 19 patients surviving to follow-up. Curr Med Res Opin. 2013;29(10):1307–13. 23844725 · DOI
  5. [6]Koekkoek JAF, van der Meer PB, Pace A, et al. Palliative care and end-of-life care in adults with malignant brain tumors. Neuro-Oncol. 2023;25(3):447–56. 10.1093/neuonc/noac216. 36271873 PMC10013651 · DOI
  6. [7]Molassiotis A, Wilson B, Brunton L, Chaudhary H, Gattamaneni R, McBain C. Symptom experience in patients with primary brain tumours: a longitudinal exploratory study. Eur J Oncol Nurs. 2010;14(5):410–6. 20363189 · DOI
  7. [8]Piil K, Juhler M, Jakobsen J, Jarden M. Controlled rehabilitative and supportive care intervention trials in patients with high-grade gliomas and their caregivers: a systematic review. BMJ Support Palliat Care. 2016;6(1):27–34. 24890014 PMC4789693 · DOI
  8. [9]Arber A, Hutson N, Guerrero D, Wilson S, Lucas C, Faithfull S. Carers of patients with a primary malignant brain tumour: are their information needs being met? Br J Neurosci Nurs. 2010;6(7):329–34. · DOI
  9. [10]Ford E, Catt S, Chalmers A, Fallowfield L. Systematic review of supportive care needs in patients with primary malignant brain tumors. Neuro-Oncol. 2012;14(4):392–404. 22307475 PMC3309849 · DOI
  10. [11]Paterson C, Toohey K, Bacon R, Kavanagh PS, Roberts C. What are the unmet supportive care needs of people affected by cancer: an umbrella systematic review. Elsevier. 2022:151353. 36435657
  11. [12]Janda M, Steginga S, Dunn J, Langbecker D, Walker D, Eakin E. Unmet supportive care needs and interest in services among patients with a brain tumour and their carers. Patient Educ Couns. 2008;71(2):251–8. 18329220 · DOI
  12. [13]Renovanz M, Hechtner M, Janko M, et al. Factors associated with supportive care needs in glioma patients in the neuro-oncological outpatient setting. J Neuro-Oncol. 2017;133:653–62. 28527007 · DOI
  13. [14]Moore G, Collins A, Brand C, et al. Palliative and supportive care needs of patients with high-grade glioma and their carers: a systematic review of qualitative literature. Patient Educ Couns. 2013;91(2):141–53. 23218925 · DOI
  14. [16]Renovanz M, Maurer D, Lahr H, et al. Supportive care needs in glioma patients and their caregivers in clinical practice: results of a multicenter cross-sectional study. Front Neurol. 2018;9:763. 30254605 PMC6141995 · DOI
  15. [17]Page MJ, McKenzie JE, Bossuyt PM, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. Int J Surg. 2021;88:105906. 33789826 · DOI · Paper page
  16. [19]Arber A, Hutson N, de Vries K, Guerrero D. Finding the right kind of support: a study of carers of those with a primary malignant brain tumour. Eur J Oncol Nurs. 2013;17(1):52–8. 22382069 · DOI
  17. [20]Boele FW, van Uden-Kraan CF, Hilverda K, et al. Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers. Support Care Cancer. 2016;24:3011–22. 26879825 PMC4877415
  18. [21]Boele FW, van Uden-Kraan CF, Hilverda K, et al. Neuro-oncology family caregivers’ view on keeping track of care issues using eHealth systems: it’sa question of time. J Neuro-oncol. 2017;134:157–67. PMC5543187 28550505 · DOI
  19. [22]Cavers D, Hacking B, Erridge SE, Kendall M, Morris PG, Murray SA. Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study. Cmaj. 2012;184(7):E373–82. 22431898 PMC3328542 · DOI
  20. [23]Collins A, Lethborg C, Brand C, et al. The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices. BMJ Support Palliat Care. 2014;4(1):68–76. 24644774 · DOI
  21. [24]Coolbrandt A, Sterckx W, Clement P, et al. Family caregivers of patients with a high-grade glioma: a qualitative study of their lived experience and needs related to professional care. Cancer Nurs. 2015;38(5):406–13. 25521908 · DOI · Paper page
  22. [25]Cubis L, Ownsworth T, Pinkham MB, Foote M, Green H, Chambers S. “Hey, I’m still here!”: maintaining, managing and rebuilding social connections after brain tumour. Neuropsychol Rehabil. 2022;1-26 35168498
  23. [27]Dahlberg M, Bylund A, Gustavsson P, Calero TH, Wannheden C. What matters to persons living with brain tumors and their informal caregivers? An interview study of qualities in interpersonal relations. Soc Sci Med. 2022;292:114575. 34814025 · DOI
  24. [28]Deatrick JA, Barakat LP, Knafl GJ, et al. Patterns of family management for adolescent and young adult brain tumor survivors. J Fam Psychol. 2018;32(3):321. 29698006 PMC5926795 · DOI
  25. [29]Foust Winton RE, Draucker CB, Von Ah D. Pain management experiences among hospitalized post-craniotomy brain tumor patients. Cancer Nurs. 2021;44(3):E170. PMC7794082 32657900
  26. [30]Francis SR, Hall EO, Delmar C. Spouse caregivers’ experiences of suffering in relation to care for a partner with brain tumor: a qualitative study. Cancer Nurs. 2022;45(2):E320–8. 33654012 · DOI
  27. [31]Fraulob I, Davies EA. How do patients with malignant brain tumors experience general practice care and support? Qualitative analysis of English Cancer Patient Experience Survey (CPES) data. Neuro-Oncol Pract. 2020;7(3):313–9. PMC7274186 32528712 · DOI
  28. [32]Gately L, McLachlan S, Dowling A, Philip J. Surviving glioblastoma and a sense of disconnection. J Clin Neurosci. 2020;81:284–9. 33222931 · DOI
  29. [33]Halkett GK, Lobb EA, Oldham L, Nowak AK. The information and support needs of patients diagnosed with high grade glioma. Patient Educ Couns. 2010;79(1):112–9. 19762197 · DOI
  30. [34]Hazen RJ, Lazar A, Gennari JH. Assessing patient and caregiver needs and challenges in information and symptom management: a study of primary brain tumors. Am Med Inform Assoc. 2016:1804. PMC5333312 28269939
  31. [35]Heckel M, Hoser B, Stiel S. Caring for patients with brain tumors compared to patients with non-brain tumors: experiences and needs of informal caregivers in home care settings. J Psychosoc Oncol. 2018;36(2):189–202. 28902576 · DOI
  32. [36]Hricik A, Donovan H, Bradley SE, et al. Changes in caregiver perceptions over time in response to providing care for a loved one with a primary malignant brain tumor. NIH Public Access; 2011. PMC3880557 21356653
  33. [37]Langbecker D, Ekberg S, Yates P. Don’t need help, don’t want help, can’t get help: how patients with brain tumors account for not using rehabilitation, psychosocial and community services. Pat Educ Couns. 2017;100(9):1744–50. 28433408 · DOI
  34. [38]McConigley R, Halkett G, Lobb E, Nowak A. Caring for someone with high-grade glioma: a time of rapid change for caregivers. Palliat Med. 2010;24(5):473–9. 20123944 · DOI
  35. [39]Nixon A, Narayanasamy A. The spiritual needs of neuro-oncology patients from patients’ perspective. J Clin Nurs. 2010;19(15-16):2259–370. 20529167 · DOI
  36. [40]Ownsworth T, Goadby E, Chambers SK. Support after brain tumor means different things: family caregivers’ experiences of support and relationship changes. Front Oncol. 2015;5:33. 25729740 PMC4325881 · DOI
  37. [41]Philip J, Collins A, Brand CA, et al. “I’m just waiting…”: an exploration of the experience of living and dying with primary malignant glioma. Support Care Cancer. 2014;22:389–97. 24072476 · DOI
  38. [42]Raju B, Reddy NK. Perspectives of glioblastoma patients on death and dying: a qualitative study. Indian J Palliat Care. 2018;24(3):320. 30111946 PMC6069617
  39. [43]Sterckx W, Coolbrandt A, Clement P, et al. Living with a high-grade glioma: a qualitative study of patients' experiences and care needs. Eur J Oncol Nurs. 2015;19(4):383–90. 25697546 · DOI
  40. [44]Tastan S, Kose G, Iyigun E, Ayhan H, Coskun H, Hatipoglu S. Experiences of the relatives of patients undergoing cranial surgery for a brain tumor: a descriptive qualitative study. J Neurosci Nurs. 2011;43(2):77–84. 21488581 · DOI
  41. [45]Vedelø TW, Sørensen JCH, Delmar C. Patients’ experiences and care needs during the diagnostic phase of an integrated brain cancer pathway: a case study. J Clin Nurs. 2018;27(15-16):3044–55. 29603812 · DOI
  42. [46]Vedelø TW, Sørensen JCH, Delmar C. "Being alone surrounded by healthcare providers"—exploring an integrated brain cancer pathway from a patient perspective: a longitudinal case study. Int J Human Caring. 2019;23(1):23–39. · DOI
  43. [47]Wasner M, Paal P, Borasio GD. Psychosocial care for the caregivers of primary malignant brain tumor patients. J Soc Work End-of-Life Palliat Care. 2013;9(1):74–95. 23438646 · DOI
  44. [48]Whisenant M. Informal caregiving in patients with brain tumors. Oncology Nursing Forum. 2011;8:5. PMC12266670 21875834
  45. [49]Roberts C, Toohey K, Paterson C. The experiences and unmet supportive care needs of partners of men diagnosed with prostate cancer: a meta-aggregation systematic review. Cancer Nurs. 2022;10(1097) 36480350
  46. [51]McCartney A, Butler C, Acreman S. Exploring access to rehabilitation services from allied health professionals for patients with primary high-grade brain tumours. Palliat Med. 2011;25(8):788–96. 21393353 · DOI
  47. [52]Bigi S, Ganfi V, Borelli E, et al. Perceptions of hope among bereaved caregivers of cancer patients who received early palliative care: a content and lexicographic analysis. Oncologist. 2022;27(2):e168–75. 35641207 PMC8895751 · DOI
  48. [53]Bigi S, Ganfi V, Borelli E, et al. Perceptions of death among patients with advanced cancer receiving early palliative care and their caregivers: results from a mixed-method analysis. Oncologist. 2023;28(1):e54–62. 36320128 PMC9847550 · DOI
  49. [54]Fliedner M, Zambrano S, Schols JM, et al. An early palliative care intervention can be confronting but reassuring: a qualitative study on the experiences of patients with advanced cancer. Palliat Med. 2019;33(7):783–92. 31068119 · DOI
  50. [56]Paterson C, Bacon R, Dwyer R, et al. The role of telehealth during the COVID-19 pandemic across the interdisciplinary cancer team: implications for practice. Seminars in Oncology Nursing 2020:151090. PMC7561334 33218886
  51. [57]Paterson C, Gobel B, Gosselin T, et al. Oncology nursing during a pandemic: critical reflections in the context of COVID-19. Seminars in Oncology Nursing. 2020:151028. PMC7177078 32423833

Authors
Paterson, C., Roberts, C., Li, J., Chapman, M., Strickland, K., Johnston, N., Law, E., Bacon, R., Turner, M., Mohanty, I., Pranavan, G., & Toohey, K.
Affiliations
  • University of Canberra (AU)
  • Act Health (AU)
  • Australian National University (AU)
  • Edith Cowan University (AU)
Corresponding author
Paterson, C.
ORCID
Venue
Journal of Cancer Survivorship
Publisher
Springer Science and Business Media LLC
Published
2023-05-31
Volume
18
Issue
5
Pages
1608-1629
ISSN
  • 1932-2259 (ISSN-L)
  • 1932-2267
DOI
10.1007/s11764-023-01401-5
PMC
PMC10229398
OpenAlex
W4378783677
Cited by
41
References
57
Citations by year
2026: 9 · 2025: 24 · 2024: 7 · 2023: 1
FWCI
1.33
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Cancer Survivorship (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Open Access Institutional Repository at Robert Gordon University (Robert Gordon University) (submittedVersion, cc-by)
  • Australasian Journal of Paramedicine (submittedVersion, cc-by)
Funders
University of Canberra
Topics
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
Keywords
brain cancer, supportive care, informal caregivers, patient experience, caregiver experiences, unmet supportive care needs, loneliness, oncology services, holistic needs assessment, palliative care referral, cancer survivorship
MeSH terms
Brain Neoplasms, Humans, Social Support, Caregivers, Qualitative Research

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