Sibling Mortality Burden in Low-Income Countries: A Descriptive Analysis of Sibling Death in Africa, Asia, and Latin America and the Caribbean
Child; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Young Adult; Developing Countries; Socioeconomic Factors; Latin America; Asia; Poverty; Cost of Illness; Global Health; Siblings; Caribbean Region; Mortality/trends; West Indies
In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and mortality in lower-income countries, the level, timing, intensity, and circumstances surrounding sibling mortality are likely to follow patterns distinct from those in higher-income settings. Thus, in this study, we offer a descriptive overview of sibling death in 43 countries across sub-Saharan Africa, South and Southeast Asia, and Latin America and the Caribbean. Specifically, we analyze Demographic and Health Survey data from nationally representative samples of 352,930 15- to 34-year-old women, born between 1985 and 2003, to document experiences of sibling death before age 25. On average, roughly one-third of individuals report a deceased sibling in these countries; estimates reach 40-50% of respondents in multiple African countries, particularly those that have experienced conflict and war. Although some sibling deaths occurred before the focal respondent was born, most bereaved individuals recalled a death during their lifetime-often in late childhood/early adolescence. High proportions of bereaved respondents report multiple sibling deaths, highlighting the clustering of deaths within families. Even so, bereaved individuals tend to come from large families and thus frequently have a comparable number of surviving siblings as people who never experienced a sibling die. Together, the results offer a window into global inequality in childhood experiences, and they attest to the need for research that explores the implications of sibling mortality for young people in world regions where the experience is concentrated.
Smith-Greenaway E; Weitzman A
PLoS One
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1371/journal.pone.0236498" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0236498</a>
Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported
adult; anesthesia; Asia; cancer radiotherapy; central nervous system tumor; child; conference abstract; controlled study; death; electronic medical record; employer; female; follow up; fraud; housing; human; immigration; lowest income group; major clinical study; male; medical record review; mental stress; neuroblastoma; organization; pain; poverty; race; radiation oncologist; radiotherapy; retrospective study; rhabdomyosarcoma; school child; South and Central America; terminal care; vulnerable population; young adult
Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the last month of life with a focus on vulnerable and underserved pediatric patients. Materials/Methods: A retrospective chart review of patients treated from 2008-2017 identified patients treated with radiotherapy with palliative intent. Demographic, diagnosis, and treatment parameters were collected from the electronic medical records. Vital status was recorded at date of death or last follow-up. Vulnerable patients were defined as belonging to a minority, adolescent and young adult (AYA), special needs, or low income population. Result(s): Of the 1092 patients treated with RT, 108 were identified as having received 227 treatments with palliative intent. Forty-five patients (42%) were female and 63 (58%) were male. The median age at the time of the first course of radiation was 11 years (range 0-25). Central nervous system (CNS) disturbance was the most common indication (n=50, 46%) followed by pain (n=44, 41%). Top primary diagnoses included CNS neoplasm (n=30, 37%), neuroblastoma (n=20, 19%), and rhabdomyosarcoma or other sarcoma (n=11, 10%). Forty-four percent were treated with anesthesia for at least one course of radiation. The median time from last course of RT to date of last follow-up was 3 months (range 0-105), and 25 patients (23%) received radiation in the last month of life. Eighty-two (76%) patients were deceased at time of review. The vulnerable constituted the overwhelming majority of the 108, only 13 (11.5%) were not. Patients were classified in the following individual categories: minority (n=90, 83.3%), AYA (n=34, 30%), special needs (n=10, 8.8%), or low income (n=70, 62%). Eight patients initially came seeking cancer treatment not available in Asia or Latin America. Latinos (n=66, 61%) were numerous and diverse, 12% were mixed race, and 18% had employer-based coverage. The most common vulnerable patients were Latin children from low income families (n=40, 35%). Obstacles to care included the immigration system, limited English, discrimination, cultural barriers, and poverty with job, transportation, and housing insecurity. Safety net and charitable organizations had scarce resources and rules intended to reduce fraud and abuse further limited access. Parents reported these challenges amplified the great psychological distress felt after the death of a child. Conclusion(s): This is the first report to document the vulnerable pediatric and AYA population receiving palliative radiation therapy at a large urban hospital. Almost a quarter of patients received treatment in the last month of life. Most commonly, a vulnerable child was Latinx from a low income family. Further investigation is needed to guide radiation oncologists on the delivery of optimal end-of-life care and address barriers to care in this population. Copyright © 2019
Wong K; Hwang L; Liu K X; Lee H J; Olch A J
International Journal of Radiation Oncology Biology Physics
2019
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<a href="http://doi.org/10.1016/j.ijrobp.2019.06.1497" target="_blank" rel="noreferrer noopener">10.1016/j.ijrobp.2019.06.1497</a>
End-of-life care among adolescent and young adult patients with cancer living in poverty
adolescent; adult; article; cancer patient; cancer therapy; controlled study; female; hospice; hospital patient; human; insurance; lowest income group; male; medical record; multicenter study; palliative therapy; patient referral; poverty; retrospective study; statistical significance; terminal care; young adult
Background: To the authors' knowledge, end-of-life (EOL) care outcomes among adolescents and young adults (AYAs) with cancer who are living in poverty remain poorly understood. The primary aim of the current study was to examine the effect of poverty on EOL care for AYA patients with cancer.
Roeland E J; Lindley L C; Gilbertson-White S; Saeidzadeh S; Currie E R; Friedman S; Bakitas M; Mack J W
Cancer
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/cncr.32609" target="_blank" rel="noreferrer noopener">10.1002/cncr.32609</a>
The Relationship Between Household Income and Patient-Reported Symptom Distress and Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study
pain; poverty; palliative therapy; major clinical study; advanced cancer; outcome assessment; cancer patient; cohort analysis; distress syndrome; human; article; child; female; male; quality of life; prevalence; secondary analysis; household income; patient-reported outcome; highest income group; lowest income group
Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described. Methods: The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [<$50,000/year] or high income [>=$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL. Results: A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (beta<inf>low-high</inf>=3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (beta=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (beta=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (beta=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (beta=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (beta=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (beta=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (beta=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL. Conclusions: In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL.
Ilowite MF; Al-Sayegh H; Ma C; Dussel V; Rosenberg AR; Feudtner C; Kang TI; Wolfe J; Bona K
Cancer
2018
<a href="http://doi.org/%2010.1002/cncr.31668" target="_blank" rel="noreferrer noopener">10.1002/cncr.31668</a>
Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala
adolescent; poverty; intensive care; blood transfusion; palliative therapy; major clinical study; retrospective study; cancer patient; patient autonomy; sound; treatment withdrawal; religion; pregnancy; case study; physician; cancer therapy; childhood cancer; conference abstract; justice; medical record review; human; child; female; adult; patient care; surgery; drug withdrawal; multidisciplinary team; cancer center; Guatemala; bioethics; brain death; cancer surgery; substance abuse; treatment refusal
Bustamante Tuchez LM; Rivas S; Paz G; Valverde P; Zaidi A; Close P
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Economic Impact of Advanced Pediatric Cancer on Families
Palliative Care; Pediatric; oncology; Disparities; financial; poverty
CONTEXT: Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer. OBJECTIVES: To describe perceived financial hardship, work disruptions, income losses, and associated economic impact in families of children with advanced cancer stratified by federal poverty level (FPL). METHODS: Cross-sectional survey of 86 parents of children with progressive, recurrent, or nonresponsive cancer at three children's hospitals. Seventy-one families with complete income data (82%) are included in this analysis. RESULTS: Parental work disruptions were prevalent across all income levels, with 67 (94%) families reporting some disruption. At least one parent quit a job because of the child's illness in 29 (42%) families. Nineteen (27%) families described their child's illness as a great economic hardship. Income losses because of work disruptions were substantial for all families; families at or below 200% FPL, however, were disproportionately affected. Six (50%) of the poorest families lost more than 40% of their annual income as compared with two (5%) of the wealthiest families (P = 0.006). As a result of income losses, nine (15%) previously nonpoor families fell from above to below 200% FPL. CONCLUSION: The economic impact of pediatric advanced cancer on families is significant at all income levels, although poorer families suffer disproportionate losses. Development of ameliorative intervention strategies is warranted.
Bona K; Dussel V; Orellana L; Kang T; Geyer R; Feudtner C; Wolfe J
Journal Of Pain And Symptom Management
2013
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2013.04.003" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.04.003</a>
Addressing transition to adult health care for adolescents with special health care needs
Cross-Sectional Studies; Female; Humans; Male; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Socioeconomic Factors; Sampling Studies; Family Characteristics; Case Management; Aging; adolescent; Parents/psychology; Health Surveys; United States/epidemiology; Continuity of Patient Care/organization & administration; poverty; Chronic Disease/epidemiology/therapy; African Americans/statistics & numerical data; European Continental Ancestry Group/statistics & numerical data; Hispanic Americans/sn [Statistics & Numerical Data]; Insurance Coverage/statistics & numerical data
OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the 2000-2001 National Survey of Children With Special Health Care Needs were used. The adequacy of transition services was determined by parent self-report. Explanatory variables, including parental education, family poverty status, race/ethnicity, measures of the severity and complexity of conditions, health insurance status, having a personal doctor, and the quality of the parent's relationship with the adolescent's doctor, were entered into a regression model. RESULTS: Overall, 50.2% of parents reported that they had discussed transition issues with their adolescent's doctor and 16.4% had discussed and developed a plan for addressing those needs. In a multivariate regression analysis, correlates of the adequacy of transition services included older age, female gender, complexity of health care needs, and higher quality of the parent-doctor relationship. CONCLUSIONS: Among adolescents with special health care needs, those who were older and those with more complicated needs were more likely to have addressed the transition from a pediatric to adult-oriented system of care. Furthermore, this analysis demonstrated a strong association between a high-quality parent-provider relationship and the extent to which transition issues were addressed. The importance of transition services for adolescents with less complex needs and the overall impact of health care transition services were not assessed in this study and remain important questions for future investigations.
2005
Scal P; Ireland M
Pediatrics
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2004-0458" target="_blank" rel="noreferrer">10.1542/peds.2004-0458</a>
Silhouette of pain
Child; Female; Humans; Pregnancy; Pregnancy Complications; Adult; Family Health; PedPal Lit; Chronic disease; Infectious; poverty; Child welfare; Relief Work; Vulnerable Populations; Benzocaine; Chickenpox/complications; Hepatitis/complications; Mississippi
2006
Cora-Bramble D
Academic Medicine
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
Parental stress and burden following traumatic brain injury amongst children and adolescents.
Child; Female; Humans; Male; Adult; England; Questionnaires; Follow-Up Studies; Health Status; Longitudinal Studies; Mental Health; Cost of Illness; Analysis of Variance; Health Education; Family Health; Family Characteristics; Stress; adolescent; Preschool; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Comparative Study; Parents/psychology; poverty; Brain Injuries/economics/psychology; Psychological/etiology
PRIMARY OBJECTIVES: To assess parental stress following paediatric traumatic brain injury (TBI), and examine the relationship between self-reported problems, parental stress and general health. RESEARCH DESIGN: Parents of 97 children admitted with a TBI (49 mild, 19 moderate, 29 severe) to North Staffordshire National Health Service Trust, and parents of 31 uninjured children were interviewed and assessed. METHODS AND PROCEDURES: Structured interviews were carried out with families, and parents assessed on the Parenting Stress Index (PSI/SF) and General Health Questionnaire (GHQ-12) at recruitment, and repeated 12 months later. MAIN OUTCOMES AND RESULTS: Forty parents (41.2%) of children with TBI exhibited clinically significant stress. Regardless of injury severity, parents of injured children suffered greater stress than control parents as measured by the PSI/SF (p = 0.001). There was a highly significant relationship between number of problems reported and level of parental stress (p = 0.001). Financial burden was related to severity of TBI. At follow-up, one third of parents of children with severe TBI scored > or =18 on the GHQ-12, signifying poor psychological health. CONCLUSIONS: The parents of a child with serious TBI should be screened for abnormal levels of stress. Parental stress and family burden may be alleviated by improved information, follow-up and support.
2003
Hawley CA; Ward AB; Magnay AR; Long J
Brain Injury
2003
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Journal Article
<a href="http://doi.org/10.1080/0269905021000010096" target="_blank" rel="noreferrer">10.1080/0269905021000010096</a>
Maternal anxiety and depression, poverty and marital relationship factors during early childhood as predictors of anxiety and depressive symptoms in adolescence
Child; Humans; Logistic Models; Longitudinal Studies; Sex Factors; Risk Factors; adolescent; Preschool; Study Design; infant; Mothers/psychology; Parent caregivers; Depression/epidemiology/psychology; Anxiety/epidemiology/psychology; poverty; Marriage/psychology; Divorce/psychology; Queensland/epidemiology
BACKGROUND: This paper examines the degree to which symptoms of anxiety and depression at age 14 years are associated with early childhood experience of maternal anxiety and depression, poverty, and mother's marital relationship distress and break-up. METHODS: In a longitudinal study, 4434 families were followed-up from infancy to adolescence. RESULTS: Maternal anxiety and depression during early childhood were found to have small, but significant, influences upon the development of high anxiety-depression symptoms at age 14, after controlling for the effects of poverty and marital relationship factors. This effect was greater with repeated exposure to high maternal anxiety and depression. Poverty, distressed marital relationship and marital break-up during the child's first five years also produced small, but significant, increases in risk of high anxiety and depression symptoms in adolescence. Stable, single-parent status was not found to be a risk factor. There was no evidence of marked gender differences in risk factors, other than poverty, which had a stronger impact for girls than boys. CONCLUSIONS: Overall, the results suggest that maternal anxiety and depression, poverty, parent relationship conflict and marital break-up during early childhood are associated with small, but significant, increased risk of anxiety-depression symptoms in adolescence.
2002
Spence SH; Najman JM; Bor W; O'Callaghan MJ; Williams GM
Journal Of Child Psychology And Psychiatry, And Allied Disciplines
2002
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Journal Article
<a href="http://doi.org/10.1111/1469-7610.00037" target="_blank" rel="noreferrer">10.1111/1469-7610.00037</a>
Improving cancer care for children in the developing world: Challenges and strategies
Child Care;childhood Cancer; Accreditation; Antineoplastic Agent; Awareness; Cancer Diagnosis; Cancer Recurrence; Cancer Registry; Cancer Research; Cancer Survival; Cancer Therapy; Clinical Effectiveness; Clinical Trial (topic); Cost Effectiveness Analysis; Country Economic Status; Cultural Factor; Delayed Diagnosis; Diagnostic Error; Family Therapy; Health Care Availability; Health Care Cost; Health Care Personnel; Human; Job Change; Medical Education; Medical Technology; Palliative Therapy; Patient Abandonment; Patient Referral; Poverty; Priority Journal; Program Sustainability; Review; Sepsis; Stratification; Toxicity
Cancer is a global health problem particularly in developing countries where the burden of cancer is ever increasing and claiming the lives of about 100,000 children under the age of 15 years every year. Majority of these occur in the Low and Middle Income Countries (LMICs) where 90% of world children live. Contributing factors to this trend is the reduction of communicable diseases and emergence of new infections, improvement of nutrition and socio-economic conditions, industrialization and urbanization. However, due to its complexity, childhood cancer is given the least priority by the governments' funding. The weak health systems, poor and late access to diagnosis and care, fewer numbers of trained health care professionals and lack of cancer drugs are amongst the many challenges faced. A major challenge for the future is extending the work to reach the many children who die without access to cancer treatment and palliation. Given the inequalities in the survival rates of children with cancer there is therefore an urgent need to close the gap between developed and developing countries. Strategies at individual, institutional, country, regional and global levels must be implemented to improve cancer survival and its effects on human suffering. These strategies are able to strengthen the health systems, improve care and research, increase awareness and coordinate training of professionals thus meeting the challenges. Financial support should be an integral part of the strategy as the cost of drugs is often a substantial barrier to treatment of cancer in poor countries. However, in resource-limited settings without specialized services, much can still be done to support and offer curative and palliative treatment. As have been shown for several cancers, life can be extended with low-tech treatment protocols, which are effective at the same time, decrease sepsis and toxicity. The concept of twinning with privileged nations is paramount to the success of any national cancer program. International partnership offers the opportunity to provide expertise, advice, support and transfer technology from established pediatric oncology unit. Their mission is to build capacity for cancer treatment and research with a vision of developing network of dedicated advocates. The LMIC teams must locally drive projects and volunteers and funding organizations can help to make progress possible. This will require a tremendous effort on the part of both high and low-middle-income countries, if we are all to work together to achieve this goal.
Al Lamki Z
Current Pediatric Reviews
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.2174/1573396312666161230145417" target="_blank" rel="noreferrer">10.2174/1573396312666161230145417</a>