Pointon Lucy, Grant Robin, Peoples Sharon, Erridge Sara, Sherwood Paula, Klein Martin, Boele Florien
Leeds Institute of Medical Research at St James's, University of Leeds, Beckett Street, Leeds LS9 7TF, UK.
School of Psychology, University of Leeds, University Rd, Woodhouse, Leeds LS2 9JU, UK.
Neurooncol Pract. 2023 Jan 4;10(3):271-280. doi: 10.1093/nop/npac099. eCollection 2023 Jun.
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.
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.
Caregivers ( = 71) reported 1-33 unmet caregiving needs ( = 17.20, sd = 7.98) but did not always wish for support (range 0-28, = 5.82, sd = 6.96). A weak correlation was found between total number of unmet needs and wish for support ( = 0.296, = .014). Most distressing items were patients' changes in memory/concentration ( = 5.75, sd = 3.29), patients' fatigue ( = 5.58, sd = 3.43), and signs of disease progression ( = 5.23, sd = 3.15).Caregivers most often wished support with recognizing disease progression ( = 24), and least often with managing spiritual issues ( = 0). Caregivers evaluated acceptability and feasibility of the CNS tool positively (mean scores ranged 4.2-6.2).
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.
大多数原发性脑肿瘤患者依靠家庭照顾者提供支持。照顾工作可能会带来回报，但也会因未满足的需求而导致巨大负担。我们的目标是：（1）识别并描述照顾者未满足的需求；（2）确定未满足的需求与支持愿望之间的关联；（3）评估照顾者需求筛查表（CNS）的可接受性以及在临床实践中的感知可行性。
从门诊招募原发性脑肿瘤患者的家庭照顾者，要求他们完成一份改编版的CNS，其中包括照顾者报告的33个常见问题（项目量表0 - 10）以及支持愿望（是/否）。参与者对改编版CNS的可接受性和可行性进行评分（项目量表0 - 7；分数越高表示越积极）。应用描述性和非参数相关分析。
照顾者（n = 71）报告了1 - 33项未满足的照顾需求（x̅ = 17.20，标准差 = 7.98），但并非总是希望获得支持（范围0 - 28，x̅ = 5.82，标准差 = 6.96）。未满足需求的总数与支持愿望之间存在弱相关性（r = 0.296，p = .014）。最令人苦恼的项目是患者记忆/注意力的变化（x̅ = 5.75，标准差 = 3.29）、患者的疲劳（x̅ = 5.58，标准差 = 3.43）以及疾病进展迹象（x̅ = 5.23，标准差 = 3.15）。照顾者最常希望在识别疾病进展方面获得支持（n = 24），最不常希望在处理精神问题方面获得支持（n = 0）。照顾者对CNS工具的可接受性和可行性给予了积极评价（平均分数范围为4.2 - 6.2）。
家庭照顾者因许多神经肿瘤学特定需求而感到困扰，但这与支持愿望没有直接关系。在临床实践中，筛查家庭照顾者的需求可能有助于根据他们的偏好提供合适的支持。
