Challenges and support for family caregivers of glioma patients

Abstract

Glioma patients are not only confronted with the diagnosis and treatment of cancer, but often experience disease-specific symptoms that greatly affect everyday life. Common symptoms among patients include motor dysfunction, sensory loss, seizures, cognitive deficits, changes in behaviour and personality, mood issues, and fatigue. This review focuses on family caregivers, for whom dealing with the diagnosis and treatment of a brain tumour in their loved one while managing disease-specific symptoms can be challenging. Supportive interventions to assist caregivers have been reported, but high quality scientific evidence for the effectiveness of these programs is largely lacking. Further research is needed to determine how we can best support family caregivers to manage glioma patients' symptoms while maintaining their own health as a caregiver. Research is also required in evaluating the health economic benefits of support programs for caregivers, as better care for caregivers may potentially reduce overall healthcare costs. KeywordsFamily caregiving; informal caregiving; glioma; brain tumour; supportive care Key points-Psychological distress is reported in approximately half of family caregivers in neuro-oncology; -Providing assistance for family caregivers may prevent them from developing emotional or physical problems themselves; -Research shows that family caregivers of glioma patients can benefit from information and concrete advice on dealing with everyday difficulties; -More research is needed as large-scale implementation of caregiver support may be hindered by the lack of high quality scientific evidence for the beneficial effects of caregiver interventions in neuro-oncology.

Palliative cancer care: costs in a Brazilian quaternary hospital

“…In our study, in relation to the costlier type of cancer, it must be considered that patients with brain cancer present with neurodegenerative disorders that trigger motor dysfunction, seizures, and changes in behaviour and personality,22 which influence their functionality and quality, as well as their families 23. Studies show that in the 4 weeks before death, patients with this type of cancer present an increase in the burden of symptoms and a decrease in the ability to participate in decision-making about the final phase of life 24 25.…”

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

“…This is necessary as at present, there is no (neuro-oncology) caregiver-specific monitoring instrument available in clinical practice. Although several interventions have been performed to try and provide support for family caregivers in neuro-oncology, some utilizing eHealth or telehealth solutions [ 30 ], none so far include the option to keep track of care issues over time to only provide supportive care as needed. Caregivers indicated they would only want to use a monitoring instrument when they experience care issues.…”

Advance care planning in glioblastoma patients: development of a disease-specific ACP program

“…Supportive treatment in the end of life phase the relationship between the patient and caregiver, an adaptation of new roles and new responsibilities [31]. Providing information and concrete advice on dealing with these everyday difficulties can benefit caregivers [32]. It has been suggested that structured ACP may provide better symptom control (through early identification of symptoms and treatment) and improvement of psychosocial support and EOL planning in brain tumor patients [20].…”