The Use of Medical Crowdfunding to Mitigate the Personal Costs of Serious Chronic Illness: Scoping Review.

BACKGROUND: Persons diagnosed with serious chronic illnesses and their caretakers experience multiple types of financial costs that strain their income and generate financial distress. Many turn to medical crowdfunding (MCF) to mitigate the harms of these costs on their health and quality of life. OBJECTIVE: This scoping review aims to summarize the research on MCF for persons diagnosed with serious chronic illness regarding study designs and methods; the responsible conduct of research practices; and study foci as they relate to stress, stress appraisals, and the coping processes. METHODS: This review was conducted in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. Eligible studies were conducted in countries designated as high income by the World Bank and focused on beneficiaries diagnosed with serious chronic illness. The findings of the included studies were summarized as they related to the key concepts in a conceptual framework derived from an established stress, appraisal, and coping framework and a conceptual model of financial toxicity in pediatric oncology. RESULTS: Overall, 26 studies were eligible for inclusion in the review. The main findings included a lack of integration of qualitative and quantitative approaches and the inconsistent reporting of the responsible conduct of research practices. The included studies focused on financial stressors that contributed to financial burden, such as out-of-pocket payments of medical bills, basic living expenses, medical travel expenses, and lost income owing to illness-related work disruptions. Few studies addressed stress appraisals as threatening or the adequacy of available financial resources. When mentioned, appraisals related to the global financial struggle during the COVID-19 pandemic or the capacity of social network members to donate funds. The consequences of MCF included the receipt of 3 forms of social support (tangible, informational, and emotional), privacy loss, embarrassment, and the propagation of scientifically unsupported information. Studies found that friends and family tended to manage MCF campaigns. Although most of the studies (21/26, 81%) focused on monetary outcomes, a few (5/26, 19%) concentrated on peoples' experiences with MCF. CONCLUSIONS: The identified methodological gaps highlight the need for more robust and reproducible approaches to using the copious data available on public MCF platforms. The integration of quantitative and qualitative methods will allow for nuanced explorations of the MCF experience. A more consistent elaboration of strategies to promote the responsible conduct of research is warranted to minimize risk to populations that are vulnerable and express concerns regarding the loss of privacy. Finally, an examination of the unanticipated consequences of MCF is critical for the development of future interventions to optimize existing supports while providing needed supports, financial and nonfinancial, that are lacking.

Financial burden and recommended multilevel solutions among caregivers of pediatric hematopoietic stem cell transplant recipients.

BACKGROUND: The healthcare costs of patients who receive hematopoietic stem cell transplantation (HSCT) are substantial. At the same time, the increasing use of pediatric HSCT leaves more caregivers of pediatric HSCT recipients at risk for financial burden-an understudied area of research. METHODS: Financial burden experienced by caregivers of recipients who received autologous or allogeneic transplants was assessed using an explanatory mixed-methods design including a one-time survey and semi-structured interviews. Financial burden was assessed through an adapted COmprehensive Score for financial Toxicity (COST) as well as questions about the types of out-of-pocket costs and cost-coping behaviors. Chi-squared or Fisher's exact tests were used to assess differences in costs incurred and coping behaviors by financial toxicity and financial toxicity by demographic factors. Interviews were audio recorded, transcribed, and analyzed using directed content analysis. RESULTS: Of 99 survey participants, 64% experienced high financial toxicity (COST  ≤ $ \le \;$ 22). Caregivers with high financial toxicity were more likely to report costs related to transportation and diet. High financial toxicity was associated with nearly all cost-coping behaviors (e.g., borrowed money). High financial toxicity was also associated with increased use of hospital financial support and transportation assistance. Qualitative analysis resulted in four categories that were integrated with quantitative findings: (1) care-related out-of-pocket costs incurred, (2) cost-coping behaviors, (3) financial support resources used, and (4) multilevel recommendations for reducing financial burden. CONCLUSIONS: Considering the substantial, long-term financial burden among pediatric HSCT patients and their caregivers, this population would benefit from adapted and tailored financial burden interventions.

Understanding the financial and psychological impact of employment disruption among caregivers of pediatric HSCT recipients: a mixed methods analysis.

PURPOSE: Pediatric hematopoietic stem cell transplantation (HSCT) confers a substantial financial burden onto patients' families. In addition to high direct medical costs, HSCTs typically require at least one caregiver to take time away from work or other responsibilities, often leading to reduced household income. Using mixed methods, we sought to understand the impact of pediatric HSCT on caregiver employment and financial need. METHODS: We surveyed caregivers of living pediatric patients who underwent HSCT at one of two southeastern transplant centers between 2012 and 2018 (N = 95). We then interviewed a subset of caregivers (N = 18) to understand whether and how employment disruption contributed to financial distress. RESULTS: Among caregivers surveyed, the majority of household wage earners changed their work schedules to attend medical appointments and missed workdays. This resulted in income loss for 87% of families, with 31% experiencing an income reduction of over 50%. Qualitative interviews pointed to four emergent themes: (1) employment disruption exacerbated existing financial challenges; (2) parental division of labor between caregiving and providing financially led to heightened psychological distress; (3) existing employment leave and protection resources were essential but not sufficient; and (4) the ability to work remotely and having a supportive employer facilitated employment maintenance throughout the HSCT process. CONCLUSION: Expanded employment protections and access to accommodations are needed to limit the impact of HSCT on household income, health insurance, and financial hardship. Additionally, interventions are needed to ensure caregivers are equipped with the information necessary to navigate conversations with employers and prepare for the financial and psychological reality of employment disruption.

He knew more than we wanted him to know: Parent perceptions about their children's sense of pediatric cancer-related financial problems.

BACKGROUND: Treatment for pediatric cancer generates costs that place sizeable demands on family finances relative to household income. Little is known about whether children sense that their cancer has created financial problems for the family. The study purpose was to describe parents' perceptions about whether their child sensed that pediatric cancer created financial problems for their family. PROCEDURE: Family Communications Theory informed our study. We used descriptive statistics and content analysis to examine parents' (n = 417) responses to questions about the child's sense of pediatric cancer-related financial problems from a larger survey study. RESULTS: Approximately 56.2% of parents indicated that their child had no sense of the pediatric cancer-related financial problems and 44.1% indicated their child had some. Proportions of children perceived to sense these financial problems steadily increased with age grouping, while proportions perceived to have none declined. With content analysis, we identified cognitive capacity as the key child factor influencing children's sense of these problems. Influential context factors included social norms, observed changes in family routines and spending patterns, and overheard conversations between adults. Child psychological outcomes included guilt, anxiety about money, and feelings of being a burden. CONCLUSION: Pediatric oncology professionals and staff should be mindful of parent preferences about burdening children with sensitive financial information, and modify their behaviors and processes accordingly. They can also provide anticipatory guidance and psycho-education about psychological responses related to the effects of pediatric cancer on family finances and the role of cognitive development in the evolution of children's awareness of those effects.

Ethical Considerations of Social Media to Recruit Caregivers of Children With Cancer.

BACKGROUND: Social media platforms are useful for recruiting hard-to-reach populations, such as caregivers of children with cancer, for research. However, there are unique ethical considerations in using social media. OBJECTIVES: The aim of the study was to describe the methods used to recruit hard-to-reach caregivers (parents of children with cancer) for research and related ethical considerations. METHODS: We used The Belmont Report tenets (respect for persons, beneficence, and justice) as a guiding framework to identify issues relevant to social media recruitment of hard-to-reach populations and to describe how we addressed these issues in our study. RESULTS: We engaged leaders of two online communities that offer peer support for caregivers of children with cancer to help with recruitment to our study on financial effect of pediatric cancer. We identified issues in using social media for recruiting hard-to-reach populations in alignment with The Belmont Report, including risk for subject selection bias, privacy rights, protecting identity of participants, data security issues, and access to research. We addressed issues by deliberate study design decisions and engagement with online community advocates. DISCUSSION: Using social media to recruit hard-to-reach populations may be a successful way to engage them in research. Although researchers may remain compliant with the institutional review board of their facilities and are faithful to the tenets of The Belmont Report, unanticipated ethical issues may arise directly or indirectly as a result of using social media. This article identifies these issues and provides suggestions for dealing with them.

Fathers' psychological responses to pediatric cancer-induced financial distress.

BACKGROUND: To describe how pediatric cancer-induced financial distress and perceptions of their social role affected fathers' psychological responses to this distress, and quality of life (QOL) for them and their families. PROCEDURE: We analyzed father-only responses from a larger cross-sectional survey study about the impact of pediatric cancer-induced financial distress on parents. Our analytic sample was n = 87 fathers who participated in the larger study. We analyzed their data using descriptive statistics and directed content analysis. RESULTS: Conflicting role responsibilities (be there for child; work to maintain income and insurance coverage) seemed to generate responses resembling characteristic posttraumatic stress symptoms in reaction to acute declines in family finances and/or the chronic stress of insufficient finances to meet financial demands, that is, financial trauma. Fathers' personal sense of not being able to adequately provide for their child with cancer and also meet their family's basic needs produced embarrassment and humiliation, which led to discomfort talking about finances; fear, persistent thoughts and anxiety about money; reduced joy; beliefs that they did not deserve to express their needs; and feeling vulnerable to repeated financial stressors. CONCLUSIONS: Pediatric cancer-induced financial burden contributed to fathers' symptom severity and burden, and QOL declines. Clinicians should develop sensitivity to the multiple ways that pediatric cancer affects individuals and families. Future research should examine the effects of pediatric cancer-induced financial burden on mothers, and develop ways to sensitively and systematically assess financial burden, associated psychological responses and declines in QOL, and intervene as indicated.

Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity.

INTRODUCTION: Children with chronic illnesses and medical complexity (CIMC) require frequent health-care use, thereby increasing medical care costs. We evaluated parent-child perceptions of self-management, self-efficacy, and health-related quality of life (HRQOL) in children with CIMC. METHOD: Parent-children pairs (n = 32) completed three measures before discharge from the hospital (Patient Activation Measure, Self-Efficacy Scale, and Acute Care-Pediatric Quality of Life for Children 8-12 and 13-17 years). RESULTS: Parents (56.3%) and children (40.6%) reported moderate levels of self-management. HRQOL was correlated with both self-management (r = .441, p = .12) and self-efficacy (r = .464, p = .008). At least 25% to 50% reported low PedsQL subscale scores (< 70), which indicate problems with physical, emotional, social, and mental domains. DISCUSSION: Our findings support the assessment of not only physical but also mental, emotional, and social needs in children with CIMC. We recommend development and testing strategies promoting self-management and self-efficacy to maximize HRQOL and improve health outcomes in children with CIMC.

A systematic scoping review of the recent literature (∼2011-2017) about the costs of illness to parents of children diagnosed with cancer.

PURPOSE: The study purpose was to map and identify gaps in the recent (∼2011-2017) literature on the costs of illness to parents of children diagnosed with cancer. The costs of illness include direct costs, indirect costs and psychosocial costs. METHODS: A systematic scoping review was conducted. Data sources included PubMed, CINAHL, PsychInfo and EconLit. Studies were eligible for inclusion if they were conducted in high-income countries, published in the English language, and reported parent perspectives on direct costs, indirect costs and/or psychosocial costs due to financial costs. RESULTS: 25 studies were eligible. Most were conducted in Canada, the USA, or Sweden. The studies used a variety of designs, target populations, time frames and sample sizes. Intervention studies were lacking. Across studies fathers were underrepresented. While no study comprehensively measured costs of illness, more studies used rigorous methods and considered psychosocial costs. Financial costs were measured using a micro-costing or general estimates approach. Psychosocial costs were measured using a variety of PRO measures, some of which were investigator developed. The studies provide evidence that financial toxicity occurs in pediatric oncology. CONCLUSIONS: Future studies should comprehensively measure costs using a consistent set of established measures and make efforts to recruit fathers to cost of illness research. Interventions to mitigate financial toxicity are needed.