Community resources support adherence to treatment for childhood cancer in El Salvador.

OBJECTIVE: In order to reduce nonadherence and treatment abandonment of children with cancer in El Salvador, institutions located nearby the patients' homes were involved to provide support. Methodological approach: Health clinics and municipality offices in the patients' communities were asked to assist families who were not promptly located after missing hospital appointments, or those whose financial limitations were likely to impede continuation of treatment. Data was collected about the number of contacted institutions, the nature of help provided, staff's time investments, and parents' perceptions about the intervention. FINDINGS: Local institutions (133 from 206 contacts) conducted home visits (83), and/or provided parents with money (55) or transportation (60). Parents found this support essential for continuing the treatment but they also encountered challenges regarding local institutions' inconsistencies. Nonadherence and abandonment decreased. IMPLICATIONS: Economic burden was reduced on both the families and the hospital. Involvement of external institutions might become regular practice to support families of children with cancer.

Choosing a miracle: Impoverishment, mistrust, and discordant views in abandonment of treatment of children with cancer in El Salvador.

OBJECTIVE: In El Salvador, at the only hospital offering pediatric oncology care, the number of children abandoning treatment for cancer has decreased in recent years (13%-3%). An investigation of caregivers' motives for abandonment was performed over 15 months from 2012 to 2014. Caregiver and health team perspectives on abandonment are reported using the explanatory model (EM) framework. METHOD: Semistructured in-depth interviews and in hospital participant observations were conducted with caregivers of children diagnosed with cancer, who abandoned their child's treatment or were considering abandoning, and with members of the medical team. RESULTS: Of the 41 caregivers interviewed, 26 caregivers (of 19 children) abandoned their child's treatment, returned from a series of missed appointments, or showed a risk of abandoning. Caregivers of 8 children stated that a miraculous cure was the main reason for abandoning; increasing impoverishment and misgivings toward treatment and outcomes were also mentioned. The responses of the medical team demonstrated a discordant EM for the child's cancer and treatment effects and that only biomedical treatment was effective for cure. CONCLUSIONS: The caregivers' increasing impoverishment (not only financial) and misgivings about the child's treatment caused them to reconsider their therapeutic choices and rely on their belief in a miraculous cure, thus abandoning. The caregivers and medical team's discordant EM about the child's cancer and treatment must be acknowledged and shared decision making considered, together with consistency in the strategies that currently demonstrate to be effective decreasing abandonment.

Patient tracking during treatment of children with cancer in India - An exploratory study.

BACKGROUND: Abandonment of treatment, a major cause of treatment failure in low- and middle-income countries like India, is particularly high during the diagnostic and initial phase of treatment. Tracking of patients during this risk period may reduce treatment abandonment rates and increase quality of care. AIM: The primary aim was to pilot the use and check the acceptability of a tool for tracking children with cancer in New Delhi during the initial part of their treatment. Secondary aim was to estimate abandonment rates among these patients. METHODS: This prospective study was carried out in two centers of North India in New Delhi and enrolled children less than 18 years diagnosed with cancer at these centers and who had registered with Cankids for social support. Parent support group (PSG) workers maintained contact with the child's family at least once a week for the first 12 weeks. Details of each contact and subsequent action were recorded in a customized book (called "You are not alone" or YANA Book). Descriptive analysis of these contacts was done in Microsoft Excel and presented in frequencies and percentages. The five-point Likert scale was used to check the acceptability of the tool among the PSG workers. RESULTS: Seven PSG workers enrolled and tracked 81 patients (73% male with a median age of 6 years). During the 12-week study period, 986 contacts were attempted and three (3.7%) patients had abandoned their treatment. All PSG workers strongly agreed that the YANA book was simple to understand and use, decreased their workload, and helped provide better assistance to patients. CONCLUSION: The tool for patient tracking was well accepted by the PSG workers and considered easy to use. We now plan to implement our model as a routine service at all the partnering hospitals in India.

Childhood cancer in El Salvador: A preliminary exploration of parental concerns in the abandonment of treatment.

PURPOSE: In El Salvador, children under 12 diagnosed with cancer have access to free treatment at a specialized national facility. Until recently, 13 percent of patients annually abandoned therapy--a serious loss of lives and scarce resources. This qualitative study explores how some parents perceived their child's cancer and treatment, and what led them to stop bringing their child for chemotherapy. METHOD: In in-depth interviews, parents of six children who abandoned their child's cancer treatment discussed sickness and life circumstances during the course of treatment. RESULTS: Poverty, effects of treatment, mistrust, emotions and religious convictions all figured in the parents' explanation of their actions. However, each family weighed these concerns differently. It was the interaction of the concerns, and not the concern per se, that represented the explanatory frameworks the families used to explain stopping their child's treatment. This finding illustrates the parents' navigation among a collection of variable concerns, rather than exposing one fixed cause for their behavior. For example, poverty affects a parent's worldview as well as concrete living conditions, and therefore has a complex relationship with abandonment of treatment. Thus, it follows that strategies to reduce treatment abandonment (and increase a child's chance for survival) must be multidimensional. CONCLUSIONS: Qualitative studies of how families perceive childhood cancer and treatment can illuminate the processes and relationships involved in abandonment of treatment. This approach can also show how families' living circumstances frame their perceptions and inform strategies to improve how medical services are provided, thus reducing abandonment of treatment.

Caracterización de las familias que abandonan el tratamiento de estimulación temprana. Centro Senén Casas Regueiro / Characterization of the families that abandon the early stimulation treatment. Senén Casas Regueiro Center

Introducción: se desconoce por qué las familias y consecuentemente el infante interrumpe o abandona el tratamiento establecido por el Programa de Atención Temprana para los trastornos del neurodesarrollo. Objetivo: Describir las características de las familias que abandonan el tratamiento de estimulación temprana en el centro Senén Casa Regueiro. Material y Métodos: estudio descriptivo, transversal en familias de infantes de 0 a 12 años con trastornos del neurodesarrollo en La Habana Vieja durante el periodo 2014-2015, que considera variables demográficas, sociales y económicas. En el análisis se emplearon las frecuencias absolutas y relativas, la media, la desviación estándar y las pruebas x2. Resultados: la prevalencia de abandono del tratamiento fue del 88,0 por ciento. Los porcentajes de mayor interrupción se presentaron en madres o tutores de 15-18 años (47,20 por ciento, x2 = 10,47 p = 0.0001) y en hijos de padres divorciados (52,00 por ciento). El nivel de escolaridad que mayor porcentaje aportó al problema fue el primario (52,00 por ciento, x2 = 20, 69 p= 0,0000), en familias con mayor número de hijos; de 3-4 hijos (86,40 por ciento, x2 = 29,90 p = 0,00000), que poseían viviendas en malas condiciones (48,00 por ciento x2 = 9,45 p = 0,00021). Los tratamientos más prolongados expresaron mayor porcentaje de abandono (60,00 por ciento, x2 = 3,75 p = 0,053519). Tanto las familias que desertaron del tratamiento, como las que no, presentaron elevados porcentajes de buena satisfacción con el programa (95,20 por ciento y 94,12 por ciento respectivamente). Conclusiones: predominó el abandono al tratamiento en madres cuyos grupos de edades oscilaron entre 15-18 años, divorciadas, en niños con tratamientos más prolongados; destacándose el nivel de escolaridad primario de las madres y las malas condiciones de la vivienda. Asimismo, interrumpieron el tratamiento las familias con mayor número de hijos y menor número de personas con remuneración monetaria(AU)

Introduction: It is unknown why families and consequently, the infant interrupt or abandon the treatment established by the Early Care Program for neurodevelopmental disorders. Objective: To describe the characteristics of families that abandon the early stimulation treatment at the "Senén Casas Regueiro" Center of Comprehensive Pediatric Rehabilitation. Material and Methods: A descriptive, cross-sectional study was conducted in families of infants with neurodevelopmental disorders from 0 to 12 years old in Old Havana, during the period 2014-2015. Demographic, social, and economic variables were considered. Absolute and relative frequencies, the mean, the standard deviation, and the chi-squared tests were used in the analysis. Results: The prevalence of abandonment of treatment was 88.0 percent. The percentages of greatest interruption occurred in mothers or guardians aged 15-18 years (47.20 percent; x2= 10.47; p = 0.0001), and in children of divorced parents (52.00 percent). The level of education that contributed in the highest percentage to the problem was primary schooling (52.00 percent; x2 = 20, 69; p = 0.0000) in families with the largest number of children; families with 3-4 children (86.40 percent; X2 = 29.90; p = 0.00000), who lived in homes in poor conditions (48.00 percent x2 = 9.45; p = 0.00021). Longer treatments expressed a greater percentage of abandonment (60.00 percent; x2 = 3.75; p = 0.053519). Both the families that abandoned the treatment and those that did not do it, showed high percentages of good satisfaction with the program (95.20 percent and 94.12 percent, respectively). Conclusions: Abandonment of treatment predominated in mothers whose age groups ranged between 15-18 years; divorced; in children with more prolonged treatments; highlighting the mothers with primary schooling and poor housing conditions. Likewise, families with a greater number of children and a smaller number of people with monetary remuneration interrupted the treatment(AU)