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

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

doi:10.1007/s11764-023-01401-5

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

Journal article

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

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

Journal of cancer survivorship, Vol.18(5), pp.1608-1629

01/10/2024

DOI: https://doi.org/10.1007/s11764-023-01401-5

PMID: 37256499

Appears in Recent Faculty of Health Publications

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Abstract

Qualitative

Systematic review

Brain cancer

Supportive care

Patients

Informal caregivers

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.

Details

Title: What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: A qualitative systematic review
Creators: C. Paterson - University of Canberra
C. Roberts - University of Canberra
J. Li - Canberra Health Services and ACT Health
M. Chapman - Australian National University
K. Strickland - Edith Cowan University
N. Johnston - Canberra Health Services and ACT Health
E. Law - Icon Canc Ctr, Canberra, Australia
R. Bacon - University of Canberra
M. Turner - University of Canberra
I. Mohanty - University of Canberra
G. Pranavan - Canberra Health Services and ACT Health
K. Toohey - University of Canberra
Publication Details: Journal of cancer survivorship, Vol.18(5), pp.1608-1629
Publisher: Springer Nature
Number of pages: 22
Grant note: ACT Health Research and Innovation Fund CAUL
Identifiers: 991013139813602368
Academic Unit: Faculty of Health
Language: English
Resource Type: Journal article

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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