TY - JOUR
T1 - Unmet needs and wish for support of family caregivers of primary brain tumor patients
AU - Pointon, Lucy
AU - Grant, Robin
AU - Peoples, Sharon
AU - Erridge, Sara
AU - Sherwood, Paula
AU - Klein, Martin
AU - Boele, Florien
N1 - Funding Information: This work was supported by a Niels Stensen Fellowship and a Yorkshire Cancer Research University Academic Fellowship (PI: FB). Publisher Copyright: © The Author(s) 2023. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology.
PY - 2023/6/1
Y1 - 2023/6/1
N2 - Background. Most primary brain tumor patients rely on family caregivers for support. Caregiving can be rewarding, but also leads to significant burden from unmet needs. We aimed to: (1) identify and characterize caregivers’ unmet needs; (2) determine associations between unmet needs and wish for support; (3) evaluate acceptability of the Caregiver Needs Screen (CNS) and perceived feasibility in clinical practice. Methods. Family caregivers of primary brain tumor patients were recruited from outpatient clinics and asked to complete an adapted version of the CNS consisting of 33 common issues caregivers report (item scale 0–10), and the wish for support (yes/no). Participants ranked acceptability and feasibility (item scale 0–7; higher scores being positive) of the adapted CNS. Descriptive and non-parametric correlational analyses were applied. Results. Caregivers (N = 71) reported 1–33 unmet caregiving needs (M = 17.20, sd = 7.98) but did not always wish for support (range 0–28, M = 5.82, sd = 6.96). A weak correlation was found between total number of unmet needs and wish for support (r = 0.296, P = .014). Most distressing items were patients’ changes in memory/concentration (M = 5.75, sd = 3.29), patients’ fatigue (M = 5.58, sd = 3.43), and signs of disease progression (M = 5.23, sd = 3.15). Caregivers most often wished support with recognizing disease progression (N = 24), and least often with managing spiritual issues (N = 0). Caregivers evaluated acceptability and feasibility of the CNS tool positively (mean scores ranged 4.2–6.2). Conclusions. Family caregivers experience distress resulting from many neuro-oncology specific needs, but this is not directly related to wish for support. Family caregiver needs screening could be useful to tailor support to suit their preferences in clinical practice.
AB - Background. Most primary brain tumor patients rely on family caregivers for support. Caregiving can be rewarding, but also leads to significant burden from unmet needs. We aimed to: (1) identify and characterize caregivers’ unmet needs; (2) determine associations between unmet needs and wish for support; (3) evaluate acceptability of the Caregiver Needs Screen (CNS) and perceived feasibility in clinical practice. Methods. Family caregivers of primary brain tumor patients were recruited from outpatient clinics and asked to complete an adapted version of the CNS consisting of 33 common issues caregivers report (item scale 0–10), and the wish for support (yes/no). Participants ranked acceptability and feasibility (item scale 0–7; higher scores being positive) of the adapted CNS. Descriptive and non-parametric correlational analyses were applied. Results. Caregivers (N = 71) reported 1–33 unmet caregiving needs (M = 17.20, sd = 7.98) but did not always wish for support (range 0–28, M = 5.82, sd = 6.96). A weak correlation was found between total number of unmet needs and wish for support (r = 0.296, P = .014). Most distressing items were patients’ changes in memory/concentration (M = 5.75, sd = 3.29), patients’ fatigue (M = 5.58, sd = 3.43), and signs of disease progression (M = 5.23, sd = 3.15). Caregivers most often wished support with recognizing disease progression (N = 24), and least often with managing spiritual issues (N = 0). Caregivers evaluated acceptability and feasibility of the CNS tool positively (mean scores ranged 4.2–6.2). Conclusions. Family caregivers experience distress resulting from many neuro-oncology specific needs, but this is not directly related to wish for support. Family caregiver needs screening could be useful to tailor support to suit their preferences in clinical practice.
KW - brain tumor
KW - caregiver needs
KW - neuro-oncology
KW - screening instrument
UR - http://www.scopus.com/inward/record.url?scp=85161642615&partnerID=8YFLogxK
U2 - https://doi.org/10.1093/nop/npac099
DO - https://doi.org/10.1093/nop/npac099
M3 - Article
C2 - 37188166
SN - 2054-2577
VL - 10
SP - 271
EP - 280
JO - Neuro-Oncology Practice
JF - Neuro-Oncology Practice
IS - 3
ER -