Securing continuation of treatment for children with cancer in times of social unrest and pandemic

Abstract Background Childhood cancer in Chile reports 500 new cases each year of which 85% are treated in the public health system. Governmental programs ensure access to diagnosis, treatment, follow up and palliative care, whereas Fundación Nuestros Hijos (FNH) provides supportive care for non‐covered medical and psychosocial needs. Common financial difficulties in families of children and adolescents with cancer increased considerably when a wave of social unrest arose in October 2019 and the Covid‐19 pandemic in March 2020 hit the country, leaving families of children with cancer facing greater challenges. Aims We report here the support activities and interventions carried out by FNH to help the families during the crisis of these months. Methods A socioeconomic survey was conducted among FNH's beneficiary families to know their needs. During these months of acute crisis for many families, support activities and interventions were developed and varied types of aid were allocated to help the families. Results The main results of the survey in which 525 (70%) of FNH's beneficiary families participated showed that 75% of them had only one breadwinner, and 52% had one unemployed family member. Almost 90% of job loss happened during the months of social unrest and pandemic. Four main interventions: (a) safe transportation, (b) food, (c) heating, (d) internet connectivity, were organized to support important needs of the families and prevent children to miss treatment appointments. Additionally, some families who did not access governmental emergency aid were guided in the process. Conclusions The aid provided helped the families to relieve some of their needs, facilitated the continuation of treatment during the pandemic, and made the caregivers feel supported and listened.


| INTRODUCTION
With about 500 children under 15 years diagnosed with cancer annually, and an estimated 1000 children and teenagers in treatment each year, Chile has a childhood cancer survival rate of 78%. 1,2 About 85% of all diagnosed children are treated in the public health system through the Pediatric Antineoplastic Drug Program 3 which offers comprehensive services including diagnosis, treatment, follow-up, and palliative care. Access and financial support are secured through the Explicit Health Guarantee Program, 4 which provides a set of guaranteed-by-law benefits regarding access, quality, opportunity, and financial protection for an ample number of chronic and lifethreatening diseases, including childhood cancer and palliative care.
It has been widely documented that social inequalities affect cancer diagnosis, treatment access or adherence, and clinical outcomes. 5 This is the case even in countries where treatment is available free of cost since the burden of cancer treatment and poverty involves a variety of social and emotional aspects beyond financial. 6 Living conditions determined by socioeconomic limitations, such as lack of good nutrition, access to electricity and running water, access to transportation, or housing conditions also affect treatment outcomes. 7 This is why, to secure treatment continuation and best treatment outcomes, financial and psychosocial support is essential in these settings, where civil society initiatives represent one of the most efficient resources contributing to better results in childhood cancer. 8 Fundaci on Nuestros Hijos (FNH) (Foundation Our Children), in partnership with the Chilean state, works to cover the multiple needs that arise in the course of treatment and follow-up, to help improve the children's quality of life and survival rates. Through a coordinated set of programs that include medical services (rehabilitation and palliative care), social services, in-hospital schools, and housing, FNH provides multidisciplinary assistance to cover or improve the benefits that the families receive through the national health system. In 2019, FNH granted 95 618 aids to 750 children and adolescents. Table 1 shows the general scope of the programs that FNH has in place to provide free of charge assistance to all children diagnosed with cancer in Chile.
According to the governmental classification of household income, and FNH's 2019 records 44% of its beneficiaries were in category A, which comprises people without income, and 19% were in category B, with income below the Chilean minimum wage (USD $411). These two categories are covered by the public health system and receive treatment 100% free of charge; families in category C pay 10%, and those in category D pay 20% of their treatment costs. 9 Although FNH provides its services free of charge to all families, this information offers a view of the level of the social and financial condition in which the families find themselves at the moment of their child's diagnosis. In line with this, in 2017, Zubieta et al. 10

| Interventions
The information obtained from the survey was shared as an internal report among the several technical areas of the foundation, which kept constant group communications to coordinate, organize, and distribute the aid obtained. Not all the interventions were organized based on the survey information, but some of them were directed as much as possible towards helping problems found in the survey, especially problems that could risk the continuation of treatment, like lack of transportation or financial means to attend treatment. Four of the main support interventions are explained here: transportation, food, heating, and con- nectivity. An additional informal intervention regarding aid guidance is also explained.

| RESULTS
Of the 745 families served by FNH between January 2019 and July 2020, 615 families met the initial criteria. Responses were obtained from 532 families who were able to be contacted by telephone. All gave their verbal consent to participate.
The remaining 83 families could not be reached either because they did not answer the call or because their phones were out of order. Of the total 532 who did respond, 7 surveys were discarded for inconsistencies. Therefore, 525 (70%) of FNH's beneficiary families participated and answered the questionnaire.

| Demographic characteristics
In 94% (494) of the total families surveyed the patient's main caregiver was a female. While the survey did not inquire about kinship, FNH records indicate that most children and adolescents with cancer are in the care of their mothers. Table 2 shows the type and size of families interviewed.

| Employment and socio-economic situation
While most of the families had one or more family members receiving income from work, 75% of them had only one breadwinner. About two-thirds of the families had a total monthly income below USD $578, (USD $67 per capita for these families).
Unemployment was significant, with more than half of the fami-  Table 2 shows data on reported financial difficulties of the families.

| Benefits and aid received
About main support networks and resources, 57% (252) relied primarily on their family, and 23% (101) on foundations. Many respondents expressed gratitude for the survey call, which was valued as a moment in which they felt actively listened to, welcomed, emotionally contained, and with the trust to deliver all the information requested. The government distributed national economic relief packages, which more than three-quarters of the surveyed families received (see Table 2). The reasons mentioned by 115 families for not receiving these aid packages were not being with their records up to date, not meeting the application requirements, not knowing how to make the applications, or being foreigners without a valid visa, among others.

Food support
The survey results showed that families had difficulty paying general living expenses bills. As a way of helping to reduce food costs, a total of 682 food baskets were provided to 420 families. Also, lunch and breakfast meals were delivered to 67 parents of hospitalized patients, which meant 883 lunch meals and 407 breakfast meals. Also, 50 gift cards of US$385 each were delivered, for purchases in supermarkets.

Heating support
The survey showed that most families rely on gas for cooking and heating but paying for gas was an additional difficulty. To help them with some expenses, 1100 gas purchase discount tickets were delivered. Also, 258 gas stoves, 49 kerosene stoves, and 5 electric stoves were given.

Connectivity support
During many months of the lockdown period, the hospital schools and the rehabilitation center run by FNH had to stay closed, and an online education system was started. The same online strategy was used for telerehabilitation sessions for all children and adolescents who were enrolled in schools and those who were undergoing rehabilitation treatment. Both of these services were considered a priority for the quality of life of the children, and, although most of the families had access to an internet connection, many did not have sufficient required technology to access these services. Eighty-two tablets, 95 phones, and 50 internet chips were delivered.

Guidance in government aid applications
The results from the survey showed that around 115 families did not access government aid. Although this was not an intervention systematically documented, FNH guided those families not sufficiently informed on how to access the benefits provided by the government, and in several cases, the families were helped through their application process.

| DISCUSSION
The difficult socio-economic condition of parents of children and adolescents with cancer is an ongoing challenge that represents a vulnerability for the entire family in all countries. 12 Many studies have shown that the financial impact of having a child diagnosed with cancer is considerable and long-lasting even in countries where treatment is subsidized or lack of finances are not an impediment to access treatment. 13,14 Out-of-the-pocket expenses show to be considerably high. 15 Additionally, such financial stressors contribute greatly to family burden and emotional distress. 16 T A B L E 2 General results of the socio-economic questionnaire Due to the rigorous care that children and adolescents with cancer require, many of their parents, especially mothers must leave their work or opt for informal sources of employment, which makes their economic situation more precarious especially in emergency contexts. This is a common situation for many families of children with cancer in all countries. 12 with state programs can be of great help for families who are already too financially and emotionally overwhelmed to find their way and advocate for themselves. 12,18 This was also seen in the survey as the respondents considered the foundations to be their main support network besides their relatives and family members.
In a context of global emergency such as that of the pandemic, it is not surprising that the general population is exposed to increased

ACKNOWLEDGMENTS
We thank Stacy Cooper for her assistance with language editing; Carmen Salgado and Dunja Roje for their comments and valuable inputs to explain the Chilean health care system.

CONFLICT OF INTEREST
The authors declare that there is no conflict of interest.

AUTHOR CONTRIBUTIONS
Conceptualization, data curation, formal analysis, methodology, project

ETHICS STATEMENT
Respondents to our survey consented in oral form to answer the survey. For this report and analysis, all the information has been anonymized.

DATA AVAILABILITY STATEMENT
The data analyzed for this report are available from the corresponding author on reasonable request.