Lucy Pointon, Robin Grant, Sharon Peoples, Sara Erridge, Paula Sherwood, Martin Klein, Florien Boele
{"title":"Unmet needs and wish for support of family caregivers of primary brain tumor patients.","authors":"Lucy Pointon, Robin Grant, Sharon Peoples, Sara Erridge, Paula Sherwood, Martin Klein, Florien Boele","doi":"10.1093/nop/npac099","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>Caregivers (<i>N</i> = 71) reported 1-33 unmet caregiving needs (<i>M</i> = 17.20, sd = 7.98) but did not always wish for support (range 0-28, <i>M</i> = 5.82, sd = 6.96). A weak correlation was found between total number of unmet needs and wish for support (<i>r</i> = 0.296, <i>P</i> = .014). Most distressing items were patients' changes in memory/concentration (<i>M</i> = 5.75, sd = 3.29), patients' fatigue (<i>M</i> = 5.58, sd = 3.43), and signs of disease progression (<i>M</i> = 5.23, sd = 3.15).Caregivers most often wished support with recognizing disease progression (<i>N</i> = 24), and least often with managing spiritual issues (<i>N</i> = 0). Caregivers evaluated acceptability and feasibility of the CNS tool positively (mean scores ranged 4.2-6.2).</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"10 3","pages":"271-280"},"PeriodicalIF":2.4000,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10180375/pdf/","citationCount":"1","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neuro-oncology practice","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1093/nop/npac099","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 1
Abstract
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.
期刊介绍:
Neuro-Oncology Practice focuses on the clinical aspects of the subspecialty for practicing clinicians and healthcare specialists from a variety of disciplines including physicians, nurses, physical/occupational therapists, neuropsychologists, and palliative care specialists, who have focused their careers on clinical patient care and who want to apply the latest treatment advances to their practice. These include: Applying new trial results to improve standards of patient care Translating scientific advances such as tumor molecular profiling and advanced imaging into clinical treatment decision making and personalized brain tumor therapies Raising awareness of basic, translational and clinical research in areas of symptom management, survivorship, neurocognitive function, end of life issues and caregiving