Skip to main content

Research Repository

Advanced Search

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

Paterson, C.; Roberts, C.; Li, J.; Chapman, M.; Strickland, K.; Johnston, N.; Law, E.; Bacon, R.; Turner, M.; Mohanty, I.; Pranavan, G.; Toohey, K.

Authors

C. Paterson

C. Roberts

J. Li

M. Chapman

K. Strickland

N. Johnston

E. Law

R. Bacon

M. Turner

I. Mohanty

G. Pranavan

K. Toohey



Abstract

To critically synthesise qualitative research to understand experiences of supportive care in people affected by brain cancer and their informal caregivers. 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. 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. 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. 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.

Citation

PATERSON, C., ROBERTS, C., CHAPMAN, M., STRICKLAND, K., JOHNSTON, N., LAW, E., BACON, R., TURNER, M., MOHANTY, I., PRANAVAN, G. and TOOHEY, K. 2023. What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: a qualitative systematic review. Journal of cancer survivorship [online], Online First. Available from: https://doi.org/10.1007/s11764-023-01401-5

Journal Article Type Article
Acceptance Date May 5, 2023
Online Publication Date May 31, 2023
Deposit Date Jun 20, 2023
Publicly Available Date Jun 20, 2023
Journal Journal of cancer survivorship
Print ISSN 1932-2259
Electronic ISSN 1932-2267
Publisher Springer
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1007/s11764-023-01401-5
Keywords Supportive care; Qualitative; Patients; Brain cancer; Informal caregivers; Systematic review
Public URL https://rgu-repository.worktribe.com/output/1990829
Additional Information This article has been published with separate supporting information. This supporting information has been incorporated into a single file on this repository and can be found at the end of the file associated with this output.

Files





Downloadable Citations