TAX4U Pilot Trial: Addressing Material Needs in the Pediatric Hospital Setting

A pilot randomized controlled trial (RCT) was conducted from November 2020 until April 2021 in the general inpatient setting of an academic pediatric hospital. Each family that had a child hospitalized in the pediatric inpatient setting was eligible to participate. At admission, a study flyer was provided to caregivers by the unit clerk. This flyer contained information about the study and included information on how to access our Family Resource Navigation service in the hospital. A research assistant called the families by phone and gave them additional information about the study. If the caregiver was interested, the research assistant emailed an 8-question recruitment questionnaire asking for further details about the family’s eligibility to participate. Eligible families were randomly assigned to receive either “free tax services” or “care as usual.” Families were informed that they had a 50/50 chance of being placed in any group. A biostatistician completed the computer-generated random allocation sequence, in blocks of variable sizes. All randomly assigned families were asked to fill out another questionnaire immediately after enrollment and after a 6-month follow-up. A monetary gift card of $10 CAD was offered after the completion of each survey. Survey data were stored in a REDcap database.

The inclusion and exclusion criteria for participation in the study were based on the Community Volunteer Income Tax Program (CVITP) established by the Canadian Revenue Agency.¹⁹  Families were included in the study if they had a low to modest income, defined as income for 2 persons: $45 000, 3 persons: $47 500, 4 persons: $50 000, or 5 persons: $52 500 + $2500 for each additional person.¹⁹  Families with providers who were either self-employed or received business or rental income, families with providers who owned a foreign property, and bankrupt individuals were not eligible for the CVITP program and were, therefore, excluded from the study. In addition, families that were not able to communicate in English, non-Ontario residents, and those who did not have internet access were also excluded. Non-Ontario residents were excluded because of the difference in tax filing; the internet connection was needed to participate in the consent process and to fill out the survey (and because of the strict coronavirus disease 2019 [COVID-19] measurements in place we could not offer paper versions). Because of the high study costs of translating study documents and accessing interpretation services, we needed to exclude non-English speaking families in this pilot trial.

For the intervention, 2 volunteers were formally trained according to the CVITP program. These volunteers were recruited from the volunteer page of the Canadian Certified Public Accountant Web site. Neither volunteer had any previous experience with the CVITP program. They followed an online half-day training program. This training program was offered by CVITP officers. The tax preparation was done at the families’ convenience in the days after the child was discharged. Free tax software was obtained from the CVITP program. Given that our pilot study was conducted during the COVID-19 pandemic, only virtual free tax services (by telephone or Zoom) were offered. Families were also able to access support from the Resource Navigation Service and/or social work, which is usually available in our hospital.

For care as usual, all families that self-identified as having difficulties making ends meet during their admission were referred to social work and/or could access the Resource Navigation Service. The Family Resource Navigation Service can assist families with identifying tax benefits, but they are not able to file taxes.

The primary outcome of this study was recruitment and feasibility. These were measured with the number of caregivers of patients approached and recruited for the study, and how many caregivers of patients who were in the intervention group reported ultimately receiving free tax services.

The recruitment questionnaire included questions about household composition, number of children, 2-item food insecurity screening, trouble making ends meet (“Do you ever have trouble making ends meet at the end of the month”²⁰ ), household income, self-employment, and the filing of taxes in the previous years.

Questions asked to randomly assigned families only included questions regarding parents’ employment, parents’ ethnicity, immigration status, and own health status (“In general, would you say your health is excellent, very good, good, fair, poor”). Household food insecurity was further explored with the 18-item US Household Food Security Survey Module.²¹  The Household Food Security Survey Module is included in the Canadian Community Health Survey. Caregivers were identified as household food secure if they did not have any affirmative items; moderate food insecurity if they endorsed 2 to 5 items and severe food insecurity if they affirmed >6 items. In addition, we measured parental distress with the overall distress score of the Distress Thermometer for Parents (DT-P) developed by Haverman et al in 2013.^22,23  The DT-P is a well-validated questionnaire (with normative data published for a general population of n = 1421 parents in the Netherlands).²³  The DT-P is used in diverse populations of parents with chronically ill children.²²  Numerous studies to date have used the DT-P to measure parental distress in parents of children with different pediatric chronic health conditions.^24,25  We also included the “Practical Problems” subscale of the DT-P. Parents were asked to indicate on a thermometer how much distress they have perceived in the past week regarding housing, work or study, finances and insurance, housekeeping, transport, child care, and leisure activities; “0” indicates “no distress” and “10” indicates “extreme distress.”

For this pilot study, we aimed to include 60 participants (30 participants in each arm). Whitehead et al suggested that the sample size of a pilot study should be related to the sample size of an RCT.²⁶  For a main trial with 90% power and 2-sided 5% significance with an expected small standardized effect size (0.2) of receiving a new tax benefit a pilot trial sample size of 25 per arm is recommended.²⁶  A 10% loss to follow-up will be expected; therefore our total sample size was 60 children (30 per treatment arm).

Descriptive statistics were used to describe our population and to calculate the number of caregivers of patients who were approached, recruited, randomly assigned, and completed data collection tools. An χ-square test was performed to analyze differences in the distribution of categorical variables between groups.

This study was approved by the Research Ethic Board of the Hospital for Sick Children, Toronto, Canada (#1000063550).

From November 2020 to April 2021, 564 families were reached by phone, 287 (51%) were interested in the study, and 140 (25%) filled in the 8-question recruitment survey. We found that 101 (72%) families were not eligible to participate in the study. Reasons for ineligibility were not meeting CVITP criteria (n = 59, 58%), already filed tax (n = 25, 25%), and families did not sign the consent form (n = 17, 17%). Of the 59 families that were excluded because of CVITP criteria, 25 (42%) did not meet income criteria and 21 (36%) were self-employed.

Thirty-nine families were randomly assigned, and 20 (51.3%) families were assigned to the intervention; 3 families (15%) were lost to follow-up and 10 (50%) stated they already filed their taxes, or their spouse found someone else to file their taxes, when approached for an appointment with a tax volunteer. Two families (10%) failed to attend the first appointment with the tax volunteer but could be reached at a later time point. Nineteen (48.7%) families received care as usual. We were able to file taxes for 7 (35%) families (Fig 1).

Table 1 reveals the sociodemographic characteristics of the families (n = 140) that completed the recruitment questionnaire. Eligible participants included a higher percentage of single-parent households (36% vs 14%; P = .003) and reported a higher percentage of trouble making ends meet (74% vs 47%; P = .003) and food insecurity (33% vs 12%; P = .003) than the ineligible participants. Almost one-half of all families (n = 63, 45%) reported they did not file their taxes in 2018, and almost one-third (n = 45, 32%) reported they did not file their taxes in 2019.

In the randomized group, more than one-half of the mothers were unemployed (53%), and 42% of their partners were full-time employed (Table 2). Twenty-five (69%) children had an underlying chronic health condition and, in 20 (51%), social work was involved. Of the 13 families that were randomly assigned to receive the free tax intervention and ultimately declined; 9 families came from a 2-parent household, 6 children were identified with a chronic illness, and in 4 families, social work was involved. Of the 7 families that received the free tax intervention, 4 families were single-parent households, 5 children were identified with a chronic illness, and 4 families were involved with social work.

In the care as usual group, there was a high level of parental distress (6.4 at enrollment and 5.9 at 6-month follow-up), with 15 (79%) caregivers experiencing financial distress at enrollment and 8 (62%) at the 6-month follow-up. Fifteen (79%) caregivers experienced moderate to severe food insecurity at enrollment. Nine caregivers (47%) did not receive or did not know if they received any tax benefits, and this percentage did not change at the 6-month follow-up. (Table 3).

In the intervention group, there was also a high level of parental distress (7.2 at enrollment and 5.1 at 6-month follow-up) with 15 (88%) of caregivers experiencing financial distress at enrollment. Food insecurity levels were similar to those in the care as usual group; 12 caregivers experienced (71%) moderate to severe food insecurity at enrollment. Eight parents (47%) did not or did not know if they received any tax benefits; this percentage did not change at the 6-month follow-up (Table 3).

Only 7 (41%) of caregivers in the intervention group filled in the survey 6 months after tax filing. Three families (43%) that received the intervention were satisfied with the free tax service, with the other 4 families, who ultimately did not receive the intervention, indicating that they had a neutral or somewhat satisfied experience. Two families described being extremely grateful for the free tax services and that they had no idea how much money they could receive from filing taxes: “it’s like winning a lottery” (quote of one participant).

Our study adds to the emerging literature on MFP in pediatric health care. We examined the feasibility of providing “free tax services” in a pediatric academic hospital setting. We used an existing program of community free tax services, the “Community Volunteer Income Tax Program,” which is run by the Canadian Revenue Agency.¹⁹  Our pilot TAX4U trial was able to reach vulnerable families with low income that reported a high percentage of food insecurity and having trouble making ends meet. However, the majority of the families (n = 101, 72.1%) did not meet the eligibility criteria of the CVITP program. The CVITP program has strict income criteria, and 42% of families did not meet the income criteria. Although many of those families could not participate in the CVITP program because their income was too high, many families reported food insecurity (39%) and having difficulties ends meet (47%). Self-employment is also an exclusion criterion of the CVIP program. We had to exclude many families (36%) that reported a provider as self-employed; this also included work in the gig economy, including work as an Uber or other mobile service provider driver. A high percentage of financial distress (>79%) was identified in all families that were randomly assigned. We observed a decline in parental distress scores in both the intervention and care as usual group; this is most likely explained by the fact that children were no longer in the hospital at the 6-month follow-up. In both groups, a high number of caregivers experienced distress regarding finances at follow-up (>62%).

Recruitment in our study was challenging. This may have been caused by the virtual nature of our recruitment procedure over the phone and the need to digitally sign a consent form to participate in the intervention. Seventeen families (16.8%) did not sign the electronic consent form even after telephone reminders. Unfortunately, we could not collect any details about why they chose not to sign consent as per our Research Ethics Board guidelines. Even in the families that were randomly assigned in the intervention, the dropout rate was high. Possibly because we reached some families too late in the tax season (which typically runs in Canada from February to March), some families indicated that they already filed their taxes when they were contacted by our tax volunteers. Another option is that only 1 caregiver was asked for consent during their child’s hospital admission (mostly mothers), and when discharged, the other caregiver (mostly fathers) arranged another way to do tax filing. A higher percentage of single mothers (4 of the 7) did ultimately end up using the free tax services. A last reason for the drop-out could be the virtual nature of the tax services. Unfortunately, because of COVID-19 restrictions, we did not have the option to recruit or provide the intervention in person.

Ultimately, only 7 families (35%) were able to receive free tax services. Although only a limited number of families filled in the 6-month follow-up survey, those that did receive the intervention were satisfied with the tax services offered. Therefore, we can conclude that a tax intervention may be acceptable in our population and setting; however, we ultimately recruited a low number of families, and the CVITP program did not meet the needs of caregivers who had a child admitted to the pediatric hospital. A future definitive RCT using the CVITP program may likely not be feasible.

Surprisingly, one-third and almost one-half of caregivers reported not having filed taxes in 2019 and 2018, respectively. In Canada, it is not mandatory for people who do not earn any income to file taxes. However, the only way to receive certain benefits, such as CCB, is to file taxes annually. One-third of caregivers who participated in the pilot trial did not know if they received any tax benefits when they were recruited, and ∼40% said they did not receive any tax benefits at follow-up. This may be explained by the fact that the person who completed the recruitment study survey (most often mothers) might not have been the same person filing taxes in the household. Another explanation could be that caregivers indeed do not file their taxes annually; a high percentage of parents were unemployed or on parental leave in our study population. This may imply that low-income families with a child admitted to the hospital are not receiving all their potential financial benefits.

Our study examined 1 targeted on-site financial service model of MFP; free tax services were offered but no other financial services (for example, education about benefits and screening for eligibility for benefits). In our hospital setting, a broader full-scope on-site financial coaching MFP might be more appropriate to address poverty and financial strain. Previous evidence revealed that caregivers of children with chronic health conditions face increased financial burdens for multiple reasons, including higher out-of-pocket medical expenses and the effects of caregiving on employment.^27,28  A full-scope MFP could offer long-term financial coaching and provide financial empowerment targeted at low-income families and families with children with special needs. This full-scope MFP could, for example, assist with benefit navigation, pension application, budgeting, tax filing, and debt management.

Our pilot study is the first study that provided free tax services to caregivers with a child admitted at a large pediatric academic center. In this study and in our previous work, we demonstrated the importance of addressing financial needs in our population; a large proportion of caregivers who were interested in participating in our study had difficulties making ends meet or experienced household food insecurity.²⁹  However, our study limitations should also be acknowledged. This study took place in the second wave of the COVID-19 pandemic in which there was no in-person contact. The surveys were available in English only; therefore, non-English-speaking families were excluded from the study. The appointment with the tax volunteer could also only be offered virtually; this made it more difficult for families to participate in our trial. Our volunteers reported missed appointments and difficulty organizing necessary documents. A qualitative study component could have investigated barriers to participation in our intervention in more detail.

In conclusion, offering free tax services in an academic pediatric center may be feasible and reached a vulnerable population. The authors of a future trial need to consider (1) a combination of virtual and in-person recruitment during hospital admission, (2) using a tax service without income and self-employment restrictions, and (3) exploring caregiver barriers and enablers to accessing tax services in a hospital setting in more detail. To address poverty and food insecurity in pediatric hospital care, further research should explore the outcomes of offering a full-scope MFP with broader inclusion criteria that also provides financial coaching and empowerment to families.

We would like to acknowledge Yvonne Leung and Iryna Linkova for providing assistance with filing taxes for our families.