Financial Burden of Pediatric Cancer for Patients and Their Families

Warner, Echo L.; Kirchhoff, Anne C.; Nam, Gina; Fluchel, Mark

doi:10.1200/jop.2014.001495

Cited by 115 publications

(109 citation statements)

References 23 publications

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“…An analysis of written responses, provided by the 21.2% of survivors who reported that their caregivers made “other” work changes, revealed that caregivers made a broad array of changes to their schedules, job responsibilities and in some cases their careers in order to transport the survivor to and from their medical appointments and provide care during recovery. These findings are consistent with previous research reporting that cancer caregivers miss work, work fewer hours, or make career changes as a result of their caregiving responsibilities [13, 12, 14, 24, 15]. Furthermore, research suggests that the level of work impairment among cancer caregivers is greater than among the general population [25].…”

Section: Discussionsupporting

confidence: 90%

“…A range of issues have been reported by informal cancer caregivers, including psychosocial and emotional problems, physical health problems, and decreased quality of life [5, 11, 9, 12]. For individuals who are employed, the time spent providing care can impel caregivers to take time off from work, which can lead to lost wages and financial hardship [12-15]. …”

Section: Introductionmentioning

confidence: 99%

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Employment implications of informal cancer caregiving

et al. 2016

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Purpose Previous research describing how informal cancer caregiving impacts employment has been conducted in small samples or a single disease site. This paper provides population-based estimates of the effect of cancer caregiving on employment and characterizes the employment changes made by caregivers. Methods The sample comprised cancer survivors with a friend or family caregiver, participating in either the Medical Expenditure Panel Survey Experiences with Cancer Survivorship Survey (ECSS) (n=458) or the LIVESTRONG 2012 Survey for People Affected by Cancer (SPAC) (n=4,706). Descriptive statistics characterized the sample of survivors and their caregivers’ employment changes. Multivariable logistic regression identified predictors of caregivers’ extended employment changes, comprising time off and changes to hours, duties or employment status. Results Among survivors with an informal caregiver, 25% from the ECSS and 29% from the SPAC reported their caregivers made extended employment changes. Approximately 8% of survivors had caregivers who took time off from work lasting ≥ 2 months. Caregivers who made extended employment changes were more likely to care for survivors treated with chemotherapy or transplant; closer to diagnosis or end of treatment; who experienced functional limitations; and made work changes due to cancer themselves compared to caregivers who did not make extended employment changes. Conclusions Many informal cancer caregivers make employment changes to provide care during survivors’ treatment and recovery. Implications for cancer survivors This study describes cancer caregiving in a prevalent sample of cancer survivors, thereby reflecting the experiences of individuals with many different cancer types and places in the cancer treatment trajectory.

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Section: Discussionsupporting

confidence: 90%

Section: Introductionmentioning

confidence: 99%

Employment implications of informal cancer caregiving

et al. 2016

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“…Out‐of‐pocket expenses due to travel, accommodation, childcare, food, gifts, and treats were identified as significant sources of financial burden . Work disruptions as a result of a child's treatment were ubiquitously reported, including at least one parent quitting a job to provide care for their child in 30–50% of families . Variations in study design—including duration of follow‐up and included costs—make precise reporting of the magnitude of financial costs to families challenging.…”

Section: Resultsmentioning

confidence: 99%

Assessment of Financial Burden as a Standard of Care in Pediatric Oncology

Pelletier

Bona

2015

Pediatric Blood & Cancer

114

162

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Family financial hardship has emerged as a burden of pediatric cancer treatment with negative implications for family well‐being. As part of an extensive project to create evidence‐based standards for the psychosocial care of children with cancer, we performed a literature review of pediatric cancer‐associated financial hardship utilizing six databases, and identified 24 publications for incorporation into this review. Financial hardship during childhood cancer was found to affect a significant proportion of the population and to negatively impact family well‐being. Existing literature supports a strong recommendation for assessment of financial hardship as a component of comprehensive psychosocial care in pediatric oncology. Pediatr Blood Cancer © 2015 Wiley Periodicals, Inc.

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“…4 Caregivers often experience physical stress, negative emotion, economic burden, and undesirable behavioural and physiological impacts. [4][5][6][7][8] The enormous burden reduces the caregivers' quality of life, which may reduce their ability to take care of the cancer patients. 9,10 Due to the limited cognitive ability of the children with ALL, family caregivers, particularly the parents, play an important role in delivering complex health care services in and out of the hospital.…”

Section: Introductionmentioning

confidence: 99%

Developing “Care Assistant”: A smartphone application to support caregivers of children with acute lymphoblastic leukaemia

et al. 2015

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Acute lymphoblastic leukaemia (ALL) is the most common childhood malignancy. Caring for children with ALL is an uncommon experience for parents without medical training. They urgently need professional assistance when their children are recovering at home. This paper documents the process of developing an Android application (app) "Care Assistant" for family caregivers of children with ALL. Key informant interviews and focus group studies were used before programming the app. The key informants and focus group members included: caregivers of children with ALL, cancer care physicians and nurses, and software engineers. We found several major challenges faced by caregivers: limited access to evidence-based clinic information, lack of financial and social assistance, deficient communications with doctors or nurses, lack of disease-related knowledge, and inconvenience of tracking treatments and testing results. This feedback was used to develop "Care Assistant". This app has eight modules: personal information, treatment tracking, family care, financial and social assistance, knowledge centre, self-assessment questionnaires, interactive platform, and reminders. We have also developed a web-based administration portal to manage the app. The usability and effectiveness of "Care Assistant" will be evaluated in future studies.

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Financial Burden of Pediatric Cancer for Patients and Their Families

Abstract: Efforts to reduce unexpected hospitalizations and employment disruptions by providing more comprehensive supportive care for pediatric patients with cancer could help ease families' financial burden.

Cited by 115 publications

References 23 publications

Employment implications of informal cancer caregiving

Employment implications of informal cancer caregiving

Assessment of Financial Burden as a Standard of Care in Pediatric Oncology

Developing “Care Assistant”: A smartphone application to support caregivers of children with acute lymphoblastic leukaemia

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