scholarly journals Out-of-pocket Expenditure in Childhood Cancer during the COVID-19 pandemic in an LMIC

2021 ◽  
Author(s):  
ESSY MARADIEGUE ◽  
Ivan Maza ◽  
Sharon Chavez ◽  
Lourdes Aranda ◽  
Claudia Pascual ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Informal Employment ◽  
Cross Sectional Survey ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Health Vulnerability ◽  
Parents And Caregivers ◽  
Economic Income

The COVID-19 pandemic has led to unprecedented economic and health vulnerability and inequities globally. This study aims to determine the out-of-pocket (OOP) expenditure of families of children with cancer in Peru before and during the COVID-19 pandemic. We conducted a cross-sectional survey of 235 parents and caregivers of children diagnosed with cancer in Peru. Our study suggests that OOP expenses in these families constitute a catastrophic expense for health. This situation was aggravated due to a decrease in the economic income for most families due to the disruption in formal and informal employment.

Understanding of Prognosis Among Parents of Children With Cancer: Parental Optimism and the Parent-Physician Interaction

2007 ◽  
Vol 25 (11) ◽  
pp. 1357-1362 ◽  
Author(s):  
Jennifer W. Mack ◽  
E. Francis Cook ◽  
Joanne Wolfe ◽  
Holcombe E. Grier ◽  
Paul D. Cleary ◽  
...  
Keyword(s):  
Decision Making ◽  
Functional Outcome ◽  
Response Rate ◽  
Cross Sectional Survey ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Factors Associated ◽  
Dana Farber Cancer Institute ◽  
Unrealistic Expectations

Purpose Patients often overestimate their chances of surviving cancer. Factors that contribute to accurate understanding of prognosis are not known. We assessed understanding of likelihood of cure and functional outcome among parents of children with cancer and sought to identify factors that place parents at risk for overly optimistic beliefs about prognosis. Patients and Methods We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) who were treated at the Dana-Farber Cancer Institute and Children's Hospital in Boston, MA, and the children's physicians. Parent and physician expectations for likelihood of cure and functional outcome were compared. In 152 accurate or optimistic parents, we determined factors associated with accurate understanding of likelihood of cure compared with optimism. Results The majority of parents (61%) were more optimistic than physicians about the likelihood of cure. Parents' beliefs about other outcomes of cancer treatment were similar (quality-of-life impairment, P = .70) or more pessimistic (physical impairment, P = .01; intellectual impairment, P = .01) than physicians' beliefs. Parents and physicians were more likely to agree about chances of cure when physicians had confidence in knowledge of prognosis (odds ratio [OR] = 2.55, P = .004) and allowed parents to take their preferred decision-making role (OR = 1.89, P = .019). Conclusion Parents of children with cancer are overly optimistic about chances of cure but not about other outcomes of cancer therapy. Parents tend to be overly optimistic about cure when physicians have little confidence and when the decision-making process does not meet parents' preferences. These findings suggest that physicians are partly responsible for parents' unrealistic expectations about cure.

Parents' Roles in Decision Making for Children With Cancer in the First Year of Cancer Treatment

2011 ◽  
Vol 29 (15) ◽  
pp. 2085-2090 ◽  
Author(s):  
Jennifer W. Mack ◽  
Joanne Wolfe ◽  
E. Francis Cook ◽  
Holcombe E. Grier ◽  
Paul D. Cleary ◽  
...  
Keyword(s):  
Decision Making ◽  
Cancer Treatment ◽  
First Year ◽  
Physician Communication ◽  
Cross Sectional Survey ◽  
High Quality ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Physician Perceptions ◽  
Dana Farber Cancer Institute

Purpose To evaluate the extent to which parents of children with cancer are involved in decision making in the ways they prefer during the first year of treatment. Methods We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) in their first year of cancer treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) and the children's physicians. We measured parents' preferred and actual roles in decision making and physician perceptions of parents' preferred roles. Results Most parents (127 of 192; 66%) wanted to share responsibility for decision making with their children's physician. Although most parents (122 of 192; 64%) reported that they had their preferred role in decision making, those who did not tended to have more passive roles than they wished (47 of 70; 67%; P < .001). Parents were no more likely to hold their ideal roles in decision making when the physician accurately identified the parents' preferred role (odds ratio [OR], 1.04; P = .92). Parents were less likely to hold more passive roles than they wished in decision making when they felt that physician communication (OR, 0.39; P = .04) and information received (OR, 0.45; P = .04) had been of high quality. Parents who held more passive roles than they wished in decision making were less likely to trust their physicians' judgments (OR, 0.46; P = .03). Conclusion Most parents of children in their first year of cancer treatment participate in decision making to the extent that they wish; although, nearly one fourth hold more passive roles than desired. High-quality physician communication is associated with attainment of one's preferred role.

scholarly journals Beliefs and Determinants of Use of Traditional Complementary/Alternative Medicine in Pediatric Patients Who Undergo Treatment for Cancer in South America

2017 ◽  
Vol 3 (6) ◽  
pp. 701-710 ◽  
Author(s):  
Valeria Rocha ◽  
Elena J. Ladas ◽  
Meiko Lin ◽  
Walter Cacciavillano ◽  
Elizabeth Ginn ◽  
...  
Keyword(s):  
South America ◽  
Supportive Care ◽  
Alternative Medicine ◽  
Wealth Index ◽  
Traditional Healers ◽  
Complementary Alternative Medicine ◽  
Cross Sectional Survey ◽  
Children With Cancer ◽  
Cross Sectional ◽  
American Children

Purpose The use of traditional complementary/alternative medicine (TCAM) among children with cancer has been well documented. South America has a rich history of traditional healers and medicinal resources; however, little is known about the use of TCAM among children with cancer. We sought to investigate patterns, beliefs, and determinants of TCAM use among South American children with cancer. Methods A cross-sectional survey was administered to 199 children treated for cancer at institutions located in Buenos Aires, Argentina, and Montevideo, Uruguay. Participants were queried about the type of TCAM and strength of beliefs associated with its use. Logistic regression analysis was used to estimate the odds ratios with 95% CIs. Results We found that the use of TCAM was common in both Argentina (47%) and Uruguay (76%). Variations in the forms of TCAM used were observed between the countries; however, both countries used TCAM primarily for supportive care. Mother’s education, wealth index, and TCAM belief system were significant predictors of TCAM. Conclusion To our knowledge, this study is the first to report on the use of TCAM in pediatric oncology in South America. The study identifies several predictors of TCAM use, which may serve as target variables for educational and research initiatives. The finding that most families use TCAM for supportive care suggests that future efforts could evaluate the role of TCAM to enhance existing supportive care regimens, particularly in settings where access to conventional medications are limited.

Medical visits of childhood cancer survivors in Japan: A cross-sectional survey

2011 ◽  
Vol 53 (3) ◽  
pp. 291-299 ◽  
Author(s):  
Yasushi Ishida ◽  
Shuichi Ozono ◽  
Naoko Maeda ◽  
Jun Okamura ◽  
Keiko Asami ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Medical Visits

scholarly journals Social Media Use Among Parents and Caregivers of Children With Cancer

2018 ◽  
Vol 35 (6) ◽  
pp. 399-405 ◽  
Author(s):  
Elizabeth S. Nagelhout ◽  
Lauri A. Linder ◽  
Tara Austin ◽  
Bridget Grahmann Parsons ◽  
Brantley Scott ◽  
...  
Keyword(s):  
Social Media ◽  
Cross Sectional Study ◽  
Emotional Needs ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Media Usage ◽  
Delivery Platform ◽  
Sources Of Support ◽  
Treatment Use ◽  
Parents And Caregivers

Social media as an effective source of information and support among parents and other caregivers of children with cancer has not been explored. The purpose of this cross-sectional study was to describe caregivers’ reasons for using social media, social media sites used, and predictors of social media usage. This study sample included 215 caregivers (96% parents) of children with cancer receiving cancer-related care at a tertiary children’s hospital in the Intermountain West. Most of caregivers (74%) reported using social media in relation to their child’s cancer and reported using social media to provide and receive support and information about their child’s diagnosis or treatment. Our findings suggest that social media could be a delivery platform for future interventions seeking to meet the informational and emotional needs of caregivers of children with cancer. An awareness of how parents and caregivers of children receiving cancer-related treatment use social media can help nurses understand their ongoing informational and emotional needs. Nurses can also support parents and caregivers in selecting reputable sources of support that are accessible via social media.

Pediatric cancer communication in Guatemala.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18508-e18508
Author(s):  
Dylan E. Graetz ◽  
Silvia Elena Rivas ◽  
Huiqi Wang ◽  
Yuvanesh Vedaraju ◽  
Meenakshi Devidas ◽  
...  
Keyword(s):  
Decision Making ◽  
Information Exchange ◽  
Cultural Awareness ◽  
The United States ◽  
Cross Sectional Survey ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Middle Income ◽  
Communication Processes ◽  
Healing Relationships

e18508 Background: Effective diagnostic communication is a cornerstone of cancer care. While > 90% of children with cancer live in low- and middle-income countries, little is known about patients’ and families’ communication priorities and experiences. We examined parent priorities for communication and the quality of information-exchange and decision-making during diagnostic communication in Guatemala. Methods: This study was conducted at Unidad Nacional de Oncologia Pediatrica. A cross-sectional survey was verbally administered in Spanish to 100 parents of children with cancer within 8 weeks of diagnosis. The survey included items utilized in pediatric communication studies from high-income countries and novel questions developed specifically for the study population. Results: Guatemalan parents prioritized communication functions including information exchange (99%), fostering healing relationships (98%), decision-making (97%), enabling self-management (96%) and managing uncertainty (94%) over functions such as responding to emotions (66%) and cultural awareness (48%). Almost all Guatemalan parents (96%) wanted as many details as possible about their child’s cancer. However, only 67% reported that they were always given the information they needed without asking for it, and most said they sometimes (56%) or always (18%) had questions they wanted to discuss with the doctor but did not. Half of parents (54%) correctly identified their child’s diagnosis, primary site, extent of disease (localized versus metastatic), length of proposed treatment, and treatment intent (curative versus palliative). Parents of children diagnosed with leukemia were more likely to understand all pieces of information than those whose children had solid tumors (p < 0.001). Most parents (76%) preferred to share in decision-making with oncologists. Two-thirds of parents (65%) held their preferred role in decision-making, with fathers more likely to hold their preferred role than mothers (p = 0.02). Reflecting on decisions they had made, 94% of parents strongly agreed they had made the right decisions. However, 17% of parents endorsed feeling that their choices had caused their children harm. Conclusions: Similar to findings from the United States, parents in Guatemala prioritize many aspects of diagnostic communication, especially information exchange, development of healing relationships, and decision-making. Nonetheless, many parents report challenges in information exchange and decision-making, suggesting a need for interventions to support communication processes.

The mechanisms underlying the negative effect of depression on life satisfaction among the elderly: the roles of ostracism and economic income

2021 ◽  
pp. 1-10
Author(s):  
Lei Shao ◽  
Guoliang Yu ◽  
Denghao Zhang
Keyword(s):  
Older Adults ◽  
Life Satisfaction ◽  
Satisfaction With Life ◽  
The Elderly ◽  
Satisfaction With Life Scale ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Negative Effect ◽  
Economic Income ◽  
Rural Older Adults

ABSTRACT Objectives: Depression is prevalent among older persons, which seriously threatens their life satisfaction. This study aimed to explore the internal mechanisms by which depression influences life satisfaction among the elderly, as well as the mediating and moderating effects of ostracism and economic income, respectively, in a sample of rural older adults across China. Design: This was a cross-sectional survey conducted as part of the project “Thousands of People and Hundreds of Villages (2019).” Setting: Participants were rural older adults from 31 provincial-level administrative units across China. Participants: The sample composed of 1,754 participants aged 60 years and over. Measurements: Depression was assessed with the depression subscale of the Depression Anxiety Stress Scales, life satisfaction with the Satisfaction with Life Scale, ostracism with the Ostracism Experience Scale (OES), and economic income and other control variables with related demographic scales. Moderation and mediation analyses were performed using the regression-based approach as conducted by Hayes (2013). Results: Depression negatively predicted life satisfaction among the elderly. Ostracism played a partially mediating role between depression and life satisfaction. Economic income moderated the effect of depression and ostracism on life satisfaction: High economic income weakened the negative effect of depression on life satisfaction and enhanced the negative effect of ostracism on life satisfaction. Conclusion: Improving depressed elderly people’s interpersonal relationships and financial support could improve their life satisfaction.

The financial burden of unexpected hospitalizations for childhood cancer patients and their families.

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 267-267
Author(s):  
Anne C. Kirchhoff ◽  
Echo L. Warner ◽  
Mark Fluchel
Keyword(s):  
Childhood Cancer ◽  
Cancer Patients ◽  
Primary Care Physicians ◽  
Financial Burden ◽  
Linear Regression Models ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Common Diagnosis ◽  
Primary Caretakers ◽  
Rural Patients

267 Background: Complications of therapy, such as infection, pain, or dehydration, may cause financial stress for childhood cancer patients due to unexpected hospitalizations. Treatment for childhood cancer is typically provided at tertiary health care centers, requiring rural patients to travel long distances for care. We evaluated the perceived financial burden of unanticipated hospitalizations, insurance, and rurality on childhood cancer patients and their families. Methods: A single-site, cross-sectional survey of primary caretakers of childhood cancer patients was performed from July 2010-July 2012. Eligible patients were treated at a pediatric cancer hospital, diagnosed age ≤21 years and were ≤5 years from diagnosis (N=310). Financial burden was rated on a visual analog scale of 0-100. Multivariable linear regression models were used to calculate coefficients and 95% Confidence Intervals (CI) of financial burden by number of unexpected hospitalizations (0, 1-4, ≥5) and time since diagnosis. Results: The average age at diagnosis was 7.0 (SD 5.6) years. The most common diagnosis was leukemia (47.4%). The mean number of unexpected hospitalizations was 4.2 (SD 7.3). Patients did not differ on number of unexpected hospitalizations by current age, gender, race/ethnicity, or household income. In multivariable analyses, patients 1-5 years past diagnosis with ≥5 unexpected hospitalizations reported financial burden was 22.6 (95% CI 6.2-39.1, p=0.007) points higher than those with no hospitalization and 13.7 (95% CI 2.8-23.6 p=0.007) points higher than those with 1-4 hospitalizations. Patients <1 year from diagnosis did not differ. While type of insurance (public vs. private) did not impact burden, rural patients reported 15.0 (95% CI 6.8-23.2, p<0.001) points higher financial burden than urban patients. Conclusions: A high number of unexpected hospitalizations and rural residence were associated with greater financial burden for families of childhood cancer patients. Efforts to reduce unexpected admissions by managing side effects in outpatient visits, utilizing home health nurses and collaborating with local primary care physicians for remote patients could help ease the financial burden.

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