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

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.

Identifying the supportive care needs of men and women affected by chemotherapy-induced alopecia? A systematic review.

PURPOSE: To systematically evaluate evidence regarding the unmet supportive care needs of men and women affected by chemotherapy-induced alopecia (CIA) to inform clinical practice guidelines. METHODS: We performed a review of CINAHL, MEDLINE, PsychINFO, Scopus, the Cochrane Library (CCRT and CDSR) controlled trial databases and clinicaltrials.gov from January 1990 to June 2019 according to the Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) statement. Twenty-seven publications were selected for inclusion in this analysis. RESULTS: Included reports used qualitative (ten) and quantitative (17) studies. Across these studies men and women reported the major impact that CIA had on their psychological well-being, quality of life and body image. Hair loss had a negative impact irrespective of gender, which resulted in feelings of vulnerability and visibility of being a "cancer patient". Men and women described negative feelings, often similar, related to CIA with a range of unmet supportive care needs. CONCLUSIONS: Some patients are not well-prepared for alopecia due to a lack of information and resources to reduce the psychological burden associated with CIA. Hair loss will affect each patient and their family differently, therefore, intervention and support must be tailored at an individual level of need to optimise psychological and physical well-being and recovery. IMPLICATIONS FOR CANCER SURVIVORS: People affected by CIA may experience a range of unmet supportive care needs, and oncology doctors and nurses are urged to use these findings in their everyday consultations to ensure effective, person-centred care and timely intervention to minimise the sequalae associated with CIA.