Caregivers of persons with a brain tumor: a conceptual model

Abstract

Researchers have documented negative physical and emotional consequences for both family caregivers of persons with cancer as well as caregivers of persons with a neurologic disorder. However, there is a unique subset of caregivers who must provide care for someone who may suffer from both a short, terminal trajectory of disease, as well as neurological and neuropsychiatric sequelae - the caregiver of a person with a primary malignant brain tumor. The purpose of this article was to describe a conceptual framework for providing care for a person with a primary malignant brain tumor. The demands of this particular care situation are described, as well as potential resources available to the caregiver to meet those demands. Finally, the stress response that results from the balance between care demands and caregiver resources is illustrated. Development of a conceptual framework for this caregiving population is the first step in assisting nurses to identify factors that place caregivers of persons with a primary malignant brain tumor at risk for negative consequences, and to design interventions to improve caregiver health.

Caregiver resilience in palliative care: a research protocol

“…Moreover, caregivers have to face various problems linked with patient assistance. The first type of problem is linked with difficulties in daily life, including managing care, emotions and identity problems (Soothill et al 2001, Sherwood et al 2004, Kim & Given 2008, Vrijmoet-Wiersma et al 2008, Garofalo et al 2009, Sinfield et al 2009). The second kind of problem is connected with psychological disorders (Petrie et al 2001, Haley 2003, Grassi 2007, Golant & Haskins 2008, Kim & Given 2008, Vrijmoet-Wiersma et al 2008.…”

A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services

“…Cognitive impairment, alterations in functional status and the presence of neuropsychiatric symptoms are the most common problems associated with PMBT (Sherwood et al, 2004). In one study cognitive dysfunction was evident in 50-80% of patients at the time of diagnosis (Tucha et al 2000).…”

Assessing the quality of life among caregivers of patients with gliomas

“…18 Only 2 dimensions of the CarGOQoL were significantly different between caregivers of patients with gliomas and other caregivers, burden and leisure time, which demonstrated significant effect sizes. Even without significant differences, caregivers of patients with gliomas reported lower scores in the dimensions of physical well-being and administration and finances than other oncology caregivers, with both dimensions presenting meaningful effect sizes.…”

“…Indeed, patients' QoL depends in part upon the availability of support and the capacity of the caregiver. 16,17 Caregivers of patients with brain tumors are considered a unique subset of the cancer caregiver population, 18 and issues related to QoL are very important to them 19 because of the challenges they have to confront in caring for a loved one who is suffering from a disease with a potentially short terminal trajectory and severe functional, 20 cognitive, and neuropsychological sequelae 21 that produce major changes in their lifestyle. 16 The QoL of glioma caregivers is expected to be more disrupted than that of any other oncology caregivers.…”