Unmet needs and wish for support of family caregivers of primary brain tumor patients.

IF 2.4 Q2 CLINICAL NEUROLOGY Neuro-oncology practice Pub Date : 2023-06-01 DOI:10.1093/nop/npac099
Lucy Pointon, Robin Grant, Sharon Peoples, Sara Erridge, Paula Sherwood, Martin Klein, Florien Boele
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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.

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原发性脑肿瘤患者家属照顾者未满足的需求与支持愿望。
背景:大多数原发性脑肿瘤患者依赖于家庭照顾者的支持。照顾可能是有益的,但也会因未满足的需求而导致沉重的负担。我们的目标是:(1)识别和描述护理人员未满足的需求;(2)确定未满足需求与支持愿望之间的联系;(3)评估护理者需求筛查(CNS)在临床实践中的可接受性和感知可行性。方法:从门诊招募原发性脑肿瘤患者的家庭护理人员,要求他们完成一份改良版的CNS,包括护理人员报告的33个常见问题(项目量表0-10)和支持意愿(是/否)。参与者对可接受性和可行性进行排名(项目量表0-7;较高的分数为正)。采用描述性和非参数相关性分析。结果:护理人员(N = 71)报告了1-33个未满足的护理需求(M = 17.20, sd = 7.98),但并不总是希望得到支持(范围0-28,M = 5.82, sd = 6.96)。未满足需求总数与支持意愿之间存在弱相关(r = 0.296, P = 0.014)。最令人痛苦的项目是患者的记忆/注意力变化(M = 5.75, sd = 3.29),患者的疲劳(M = 5.58, sd = 3.43)和疾病进展的迹象(M = 5.23, sd = 3.15)。护理人员最希望得到的支持是识别疾病进展(N = 24),最不希望得到的支持是处理精神问题(N = 0)。护理人员积极评价CNS工具的可接受性和可行性(平均得分范围为4.2-6.2)。结论:由于许多神经肿瘤学的特殊需求,家庭照顾者经历了痛苦,但这与支持的愿望没有直接关系。在临床实践中,家庭照顾者需求筛查可以帮助定制支持以适应他们的偏好。
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来源期刊
Neuro-oncology practice
Neuro-oncology practice CLINICAL NEUROLOGY-
CiteScore
5.30
自引率
11.10%
发文量
92
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
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