Financial burden for caregivers of adolescents and young adults with cancer

Nightingale, Chandylen L; Canzona, Mollie Rose; Danhauer, Suzanne C.; Reeve, Bryce B.; Howard, Dianna S.; Tucker-Seeley, Reginald; Golden, Shannon; Little-Greene, Denisha; Roth, Michael; Victorson, David; Salsman, John M.

doi:10.1002/pon.5937

Cited by 12 publications

(19 citation statements)

References 46 publications

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“…As such, findings suggest parents need support navigating relationship difficulties and seeking social support. Results also suggest some parents experience financial difficulties, which is particularly important given previous research suggesting financial difficulties correlate with poor mental health during cancer treatment 36 and that parents would like support locating financial resources 37 Future adaptations of EJDeR will include information and signposting for difficulties concerning relationships, finance, and employment.…”

Section: Discussionmentioning

confidence: 87%

Concerns experienced by parents of children treated for cancer: A qualitative study to inform adaptations to an internet‐administered, low‐intensity cognitive behavioral therapy intervention

et al. 2022

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Objective: Childhood cancer treatment completion is associated with mental health difficulties and negative socioeconomic consequences for parents. However, psychological support needs are often unmet. We developed an internet-administered, guided, low-intensity cognitive behavioral therapy-based self-help intervention (EJDeR) and examined feasibility and acceptability with a single-arm feasibility trial (ENGAGE). Results suggest EJDeR is acceptable, however, adherence, especially for fathers, could be improved. Following the Medical Research Council complex interventions framework, this study explores concerns experienced by parents actively seeking support related to their child's cancer who were recruited into ENGAGE to inform further adaptation of EJDeR.Method: Seventy-three semi-structured interviews (26 fathers, 47 mothers) were conducted, with data analyzed using manifest content analysis. Results: Analysis resulted in seven categories: (1) Feeling lost and lonely in life; (2) Low mood; (3) Parenting difficulties; (4) Productivity difficulties; (5) Relationship challenges; (6) Stress reactions; and (7) Worry. With the exception of subcategories Afraid of not being a good parent, Cancer recurrence, and Child's development and future a somewhat higher percentage of mothers than fathers mentioned all identified concerns. Conclusion:Parents described experiencing a range of concerns after their child had completed cancer treatment. EJDeR will be adapted to address these concerns and include indirect intervention modules targeting concerns such as stress. Information to support parenting, relationships, finance, and employment difficulties, alongside signposting to inform help-seeking, will be included. Findings also suggest a need to improve the gender-sensitivity of EJDeR.This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

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Section: Discussionmentioning

confidence: 87%

Concerns experienced by parents of children treated for cancer: A qualitative study to inform adaptations to an internet‐administered, low‐intensity cognitive behavioral therapy intervention

et al. 2022

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“…Another study of partners of patients with cancer in South Korea reported an association of caregivers’ lost savings and income with a negative impact on HRQoL . In a recent study of caregivers of adolescent and young adult cancer survivors, researchers observed high financial burden for 25% of caregivers, often secondary to employment disruptions and costs of care . In addition, a 2021 study of survivors of multiple cancer types reported associations between pain and negative survivor financial and employment outcomes .…”

Section: Discussionmentioning

confidence: 99%

“…38 In a recent study of caregivers of adolescent and young adult cancer survivors, researchers observed high financial burden for 25% of caregivers, often secondary to employment disruptions and costs of care. 39 In addition, a 2021 study of survivors of multiple cancer types reported associations between pain and negative survivor financial and employment outcomes. 40 Our results extend beyond those of prior studies to further confirm and identify mechanistic factors in the association between FT and specific domains of partner HRQoL.…”

Section: Jama Network Open | Oncologymentioning

confidence: 99%

Financial Toxicity and Its Association With Health-Related Quality of Life Among Partners of Colorectal Cancer Survivors

et al. 2023

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ImportancePartners of colorectal cancer (CRC) survivors play a critical role in diagnosis, treatment, and survivorship. While financial toxicity (FT) is well documented among patients with CRC, little is known about long-term FT and its association with health-related quality of life (HRQoL) among their partners.ObjectiveTo understand long-term FT and its association with HRQoL among partners of CRC survivors.Design, Setting, and ParticipantsThis survey study incorporating a mixed-methods design consisted of a mailed dyadic survey with closed- and open-ended responses. In 2019 and 2020, we surveyed survivors who were 1 to 5 years from a stage III CRC diagnosis and included a separate survey for their partners. Patients were recruited from a rural community oncology practice in Montana, an academic cancer center in Michigan, and the Georgia Cancer Registry. Data analysis was performed from February 2022 to January 2023.ExposuresThree components of FT, including financial burden, debt, and financial worry.Main Outcomes and MeasuresFinancial burden was assessed with the Personal Financial Burden scale, whereas debt and financial worry were each assessed with a single survey item. We measured HRQoL using the PROMIS-29+2 Profile, version 2.1. We used multivariable regression analysis to assess associations of FT with individual domains of HRQoL. We used thematic analysis to explore partner perspectives on FT, and we merged quantitative and qualitative findings to explain the association between FT and HRQoL.ResultsOf the 986 patients eligible for this study, 501 (50.8%) returned surveys. A total of 428 patients (85.4%) reported having a partner, and 311 partners (72.6%) returned surveys. Four partner surveys were returned without a corresponding patient survey, resulting in a total of 307 patient-partner dyads for this analysis. Among the 307 partners, 166 (56.1%) were aged younger than 65 years (mean [SD] age, 63.7 [11.1] years), 189 (62.6%) were women, and 263 (85.7%) were White. Most partners (209 [68.1%]) reported adverse financial outcomes. High financial burden was associated with worse HRQoL in the pain interference domain (mean [SE] score, −0.08 [0.04]; P = .03). Debt was associated with worse HRQoL in the sleep disturbance domain (−0.32 [0.15]; P = .03). High financial worry was associated with worse HRQoL in the social functioning (mean [SE] score, −0.37 [0.13]; P = .005), fatigue (−0.33 [0.15]; P = .03), and pain interference (−0.33 [0.14]; P = .02) domains. Qualitative findings revealed that in addition to systems-level factors, individual-level behavioral factors were associated with partner financial outcomes and HRQoL.Conclusions and RelevanceThis survey study found that partners of CRC survivors experienced long-term FT that was associated with worse HRQoL. Multilevel interventions for both patients and partners are needed to address factors at individual and systemic levels and incorporate behavioral approaches.

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“…A study from India has reported that nonmedical expenses of childhood cancer treatment account for 22% to 46% of the monthly income of families 12 . Out-of-pocket spending remains a significant challenge for caregivers of children with cancer in low-income settings 13 . Pandemics and other crises can exacerbate the financial burden on families of children with cancer, amplifying their impact 14 …”

Section: Discussionmentioning

confidence: 99%

The Psychosocial Impact of the COVID-19 Pandemic on Families of Children With Cancer in the Low-income Setting

Khalil,

Alyoussef,

Al Hosni

et al. 2023

Journal of Pediatric Hematology/Oncology

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The coronavirus disease 2019 (COVID-19) pandemic has had a profound effect on families’ psychosocial well-being worldwide. This study aimed to investigate the pandemic’s impact on families of children with cancer in a low-income setting in Syria. The study conducted a cross-sectional survey of 50 families of children with cancer receiving treatment at a nongovernmental organization–based pediatric oncology unit in Syria. The survey used the Corona Anxiety Scale (CAS) to assess the pandemic’s impact on families’ anxiety, and other items to evaluate the financial toxicity of the strict measures implemented during the pandemic’s first months. The study’s results revealed that the COVID-19 pandemic significantly negatively impacted the psychosocial well-being of families of children with cancer in Syria. Specifically, 22% of families reported a major increase in anxiety levels (CAS of >9), and the majority of families (84%) reported excessive indirect financial costs, including travel and living expenses. The study emphasizes the significant social and psychological impact of the COVID-19 pandemic on families of children with cancer in Syria, highlighting the need for additional psychosocial interventions to mitigate future global health crises or pandemics’ impact on this vulnerable population. The interventions should prioritize promoting resilience and adaptive coping strategies.

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Financial burden for caregivers of adolescents and young adults with cancer

Cited by 12 publications

References 46 publications

Concerns experienced by parents of children treated for cancer: A qualitative study to inform adaptations to an internet‐administered, low‐intensity cognitive behavioral therapy intervention

Concerns experienced by parents of children treated for cancer: A qualitative study to inform adaptations to an internet‐administered, low‐intensity cognitive behavioral therapy intervention

Financial Toxicity and Its Association With Health-Related Quality of Life Among Partners of Colorectal Cancer Survivors

The Psychosocial Impact of the COVID-19 Pandemic on Families of Children With Cancer in the Low-income Setting

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