The multidimensional burden of informal caregivers in primary malignant brain tumor

Bayen, É.; Laigle‐Donadey, Florence; Prouté, Myrtille; Hoang-Xuân, Khê; Joël, Marie-Ève; Delattre, Jean‐Yves

doi:10.1007/s00520-016-3397-6

Cited by 67 publications

(47 citation statements)

References 47 publications

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“…Survivors cited financial stability and the maintenance of benefits, particularly health care, as the primary reasons for maintaining employment throughout treatment. These results are in keeping with prior literature and are unsurprising, because even out‐of‐pocket costs incurred for cancer treatment and lost wages can be quite significant . In addition, similar to recent research, employer accommodations were credited with playing a considerable role in enabling survivors to remain employed throughout treatment initiation.…”

Section: Discussionsupporting

confidence: 86%

Managing work and cancer treatment: Experiences among survivors of hematological cancer

Thomson

Siminoff

2018

Cancer

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Within 6 months of initiating cancer treatment, the majority of survivors of hematological cancer had maintained employment. Because of the limitations imposed by the physical stress of cancer treatments, as well as the need to maintain employment to continue receiving employee benefits to cover such treatments, survivors of hematological cancer likely would benefit from employment accommodations that are sensitive to their unique needs. Cancer 2018;124:2824-2831. © 2018 American Cancer Society.

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Section: Discussionsupporting

confidence: 86%

Managing work and cancer treatment: Experiences among survivors of hematological cancer

Thomson

Siminoff

2018

Cancer

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“…The cost of care time was valued by measuring the time spent providing informal care, including time spent on ADL, instrumental activities of daily living (IADL), household activities or time spent with the care recipient at the hospital or medical appointments (Bayen et al, ; Guerriere et al, ; Hanly, Céilleachair, Skally, O'Leary, Kapur, et al, ; Hanly, Céilleachair, Skally, O'Leary, Staines, et al, ; Hanly, Maguire, Balfe, O'Sullivan, & Sharp, ; Palandri et al, ; Van Houtven et al, ; Yabroff & Kim, ; Yu et al, ). Studies using the PGA method to value care time reported the value of informal care as $975 to $19,112 per month with a mean of $4,809 per month ( SD = $6,441; Table ).…”

Section: Resultsmentioning

confidence: 99%

“…Studies using the PGA method to value care time reported the value of informal care as $975 to $19,112 per month with a mean of $4,809 per month ( SD = $6,441; Table ). Bayen et al () used the PGA method, but only valued time spent on ADL, leading to the lowest care time cost of $680 per month. Using the OCA method, the average cost of care time was $2,877 per month ( SD = $1,524) with a range of $1,263–$5,456 per month (Table ).…”

Section: Resultsmentioning

confidence: 99%

“…The study findings also showed considerable variation among studies using the same valuation method. For example, in studies adopting the OCA, some used the caregivers' reported wage to derive unit costs (Bayen et al, ; Van Houtven et al, ) or used a country‐specific wage (Hanly, Céilleachair, Skally, O'Leary, Kapur, et al, ; Hanly, Céilleachair, Skally, O'Leary, Staines, et al, ; Hanly et al, ; Yabroff & Kim, ) or a sex‐ and/or age‐adjusted wage (Hanly, Céilleachair, Skally, O'Leary, Staines, et al, ; Hanly et al, ; Li et al, ; Yabroff & Kim, ). A further source of variation across studies was that median or mean wages can be used to derive unit costs.…”

Section: Discussionmentioning

confidence: 99%

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The direct and indirect financial costs of informal cancer care: A scoping review

Coumoundouros

Brahim

Lambert

et al. 2019

Health Soc Care Community

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Informal caregivers are the primary source of support for cancer patients, providing assistance with household tasks, medical care and emotional support. These responsibilities often result in high levels of emotional, physical, social and financial burden for the caregiver. The aim of this study was to perform a scoping review exploring what is known regarding the financial costs experienced by caregivers and identify gaps in the literature. Seven databases were searched for articles published between May 2008 and May 2018 related to direct and indirect costs of informal cancer care. Included articles reported on the costs incurred by cancer caregivers as a dollar value, relied on caregiver‐reported costs and were peer reviewed. A total of 19 studies met the inclusion criteria. These studies reported out of pocket costs‚ opportunity costs of informal care time and caregiver time loss from paid employment. Care time was the largest source of cancer caregiver costs, averaging $4,809 per month when valued using the proxy good method or $2,877 per month when the opportunity cost approach was used. Caregiver costs were highest when the care recipient was in the palliative phase of the disease. There was an absence of literature reporting costs for cancer caregivers in low and middle income countries and none of the included studies considered costs related to the caregivers' medical expenditures. There were many challenges when comparing the costs across studies due to variations in the type of expenses reported and the methods used to value expenses. Quantifying the financial costs associated with being an informal caregiver can facilitate the communication of the financial burden caregivers experience, potentially spurring the development of policies and programs to reduce their financial burden and better support cancer caregivers.

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“…After separation, patients are more likely to be hospitalized and less likely to complete treatment, become involved in clinical trials, or die at home (Glantz et al 2009). Consequences of the disease and caregiving extend beyond this, with caregiver burden having an impact on the financial situation of the family as well (Bayen et al 2016). …”

Section: Consequences Of Family Caregivingmentioning

confidence: 99%

Challenges and support for family caregivers of glioma patients

Boele

Grant²,

Sherwood

2017

British Journal of Neuroscience Nursing

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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.

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The multidimensional burden of informal caregivers in primary malignant brain tumor

Abstract: IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.

Cited by 67 publications

References 47 publications

Managing work and cancer treatment: Experiences among survivors of hematological cancer

Managing work and cancer treatment: Experiences among survivors of hematological cancer

The direct and indirect financial costs of informal cancer care: A scoping review

Challenges and support for family caregivers of glioma patients

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