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Brain tumor

Returning research results: caregivers’ reactions following computerized cognitive training among childhood cancer survivors

Background: Few researchers routinely disseminate results to participants; however, there is increasing acknowledgment that benefits of returning results outweigh potential risks. Our objective was to determine whether use of specific guidelines developed by the Children’s Oncology Group (COG) when preparing a lay summary would aid in understanding results. Specifically, to determine if caregivers of childhood cancer survivors found a lay summary comprehensive, easy to understand, and helpful following participation in a computerized cognitive training program.

Thu, 01/05/2023 - 18:44

Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers

Background: The prognosis of patients with brain tumors is widely varying. Psychooncologic need and depression are high among these patients and their family caregivers. However, the need for counselling and need for referral to psychooncology care is often underestimated.; Methods: We performed a single-institution cross-sectional study to evaluate psychooncologic need, depression and information need in both patients and their family caregivers.

Wed, 01/13/2021 - 13:26

Psychometric Evaluation of the Caregiver Needs Screen in Neuro-Oncology Family Caregivers

BACKGROUND AND PURPOSE: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties. METHODS: The 32-item instrument was developed based on PMBT caregiver interviews (N = 109) and expert review.

Mon, 09/30/2019 - 13:19

Neuro-oncology family caregivers' view on keeping track of care issues using eHealth systems: it's a question of time

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients’ best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups.

Thu, 03/07/2019 - 11:50

Caring for patients with brain tumors compared to patients with non-brain tumors: Experiences and needs of informal caregivers in home care settings

Background/objective: Informal caregivers of patients with advanced cancer experience a challenging time, especially while caring for the patient at home. The aim of this study is to compare experiences, perceived burdens, and needs during home care of informal caregivers of brain tumor patients and informal caregivers of non-brain tumor patients.; Methods: 28 informal caregivers (17 brain tumor group, 11 non-brain tumor group) participated in this study. Semi-structured interviews were conducted to gather information retrospectively.

Fri, 02/01/2019 - 11:44

Caring for patients with brain tumor: The patient and care giver perspectives

Background: Patients with brain tumors form a heterogeneous group in terms of clinical presentation and pathology. However, the impact of the disease on patients′ families is often more homogenous and frequently quite profound. A considerable body of literature is available on the management of brain tumors and recently, the National Institute for Clinical Excellence has developed guidelines on the care of brain tumor patients that should improve the overall outcome for the patient from both the disease and psychological aspects.

Thu, 07/20/2017 - 15:15