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

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.

Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

“…According to our research, carers often felt they were being passed around between various services in their effort to receive community-based palliative care for their loved ones [40]. This phenomenon, known as being "handballed"([53] p.18)., is often attributed to poor communication between healthcare services [53,54] and a lack of information sharing between hospitals and community settings [54]. Our research shows that the shortage of primary health care personnel in the communities who are trained in palliative care added to carers' reported not feeling safe [38][39][40].…”

Falling off the screening grid—Predictors for postponed utilization of psycho‐oncological support in cancer patients and its implications for distress assessment and management

“…Herschbach et al. reported highly and mainly physically distressed patients among those with brain tumors, 25 potentially undergoing invasive treatment 26 . A possible explanation for postponing support may therefore be a discrepancy between possible causes of distress and the offered support types, which Lambert et al.…”

“…25 potentially undergoing invasive treatment. 26 A possible explanation for postponing support may therefore be a discrepancy between possible causes of distress and the offered support types, which Lambert et al proved was particularly relevant among physically burdened patients. 27 As compared to the subgroup YES, YES-LATER-patients were rather male, which is consistent with literature, 12 and the likelihood for postponing support utilization increased with male sex as well.…”

A fast transition: A case study of patients' experiences during the diagnostic and surgical treatment phase of an accelerated brain cancer pathway

“…In addition, patients report lacking information [15,17,18] and having poor communication with healthcare professionals [19,20]. Although the literature exploring the perspective of patients with brain cancer is expanding [21], knowledge about the patients' early hospital experiences and the time spent waiting for a formal diagnosis is still sparse. Descriptions of patients' experiences during hospital admission, surgery and postoperative care are needed to help patients awaiting the formal confirmation of malignant growth.…”