Neuro‐oncological patients' and caregivers' psychosocial burden during the COVID‐19 pandemic—A prospective study with qualitative content analysis

Abstract

Objective The COVID‐19 pandemic may reinforce psychosocial distress of neuro‐oncological patients. We aimed to (1) differentiate the burden caused by the pandemic versus the tumor and (2) establish topics relevant for brain tumor patients (BTPs) and caregivers. Methods Patients and caregivers were prospectively assessed from April 2020–July 2020 by a 10‐item comprising interview over the phone, including qualitative and quantitative questions. They were quantitatively evaluated i.a. by the distress thermometer (DT, score 1–10). The qualitative questions were analyzed using structured content analysis: The interview questions defined the main categories. Subcategories were derived by an inductive approach assessing the frequency of patients' and caregivers' answers. Results A total of 69 patients and 20 caregivers were interviewed; n = 36 were female (49%), mean age was 53 years (range 32–81). Patients' disease‐related DT scores were higher than the COVID‐19‐related DT scores: the median of the disease‐related DT score was 7 (range 2–10) versus median of COVID‐19‐related distress: 5.0 (range 2–7). Caregivers perceived a higher burden due to the disease (DT median disease: 8; range 2–10 vs. DT pandemic: 3, range 0–10). A total of five main and 21 subcategories were elaborated, most frequently mentioned were “restrictions in public and private affairs” (28%), “changes in the psychological well‐being” (23%), “limited social interaction by contact restriction” (25%). Subcategories relevant for caregivers were similar to those of BTPs. Conclusion A considerable proportion of patients and caregivers still perceived the brain tumor disease as more burdensome than the pandemic. We established main and subcategories of interview items possibly of great relevance to patients during these difficult times, which could be implemented in the content‐related adaption of the psychosocial assessment.

The Critical Issues for Patients and Caregivers in Neuro-Oncology During Covid-19 Pandemic: What We Have Learnt by an Observational Study.

“…In our cases, anxiety related to tumor is higher than COVID-related anxiety. Similar results were described by Binswanger that measured the distress thermometer, reporting the highest score for disease-correlation versus COVID-19-relation in neuro-oncological population [14].…”

Evaluation of the fear of Covid-19 and well-being of patients with cancer and caregivers

“…In another study, different scale used than ours, cancer patients' well-being were in low range (29). In a study conducted among caregivers, 15% of them stated that they noticed a change in their psychological well-being (30). On the other hand, Ripamonti et al (31) determined that the psychological well-being of patients with cancer is higher than in the general population during the pandemic.…”

Religious coping, care burden and psychological distress among informal caregivers of COVID-19 patients: Results of a cross-sectional survey in Pakistan

“…Caregivers are frequently emotionally drained ( Losada et al, 2022 ) and wish for escapism ( Dubey et al, 2021 ) from the situation because they feel detachment ( Anderson & Parmar, 2020 ), physical ( Dhavale et al, 2020 ) as well as emotional suffering ( Sun et al, 2020 ) due to their frenzied routine of constant care provision ( Mohammadi et al, 2021 ). Care providers also bear social isolation ( Pietrabissa et al, 2021 ), financial problems ( Prime et al, 2020 ), limited social mobility ( Binswanger et al, 2021 ) and lack of communication with other family members, friends and relatives ( Mojtahedzadeh et al, 2021 ). Therefore, this study aims to investigate the relationship between religious coping, care burden and psychological distress among caregivers during COVID-19 in Pakistan, being an example for a traditionally oriented country.…”