Experiences of Financial Stress and Supports in Caregivers During Pediatric Hospital Admission

We conducted a qualitive, single center study using individual, semistructured, in-depth interviews of caregivers at The Hospital for Sick Children (SickKids), Toronto, Canada from May 2022 to June 2022. We report our methods following Consolidated criteria for Reporting Qualitative studies guidelines.¹⁷  This study was approved by the SickKids Research Ethics Board (REB 1000079508).

SickKids provides specialized pediatric care to children in the province of Ontario, where most individuals receive government funded health insurance. In 2020, 34% of caregivers with a child admitted to the general pediatric ward experienced household food insecurity and 37% reported having difficulties making ends meet.¹⁸  In Ontario, 17% of the population speaks a language other than English at home.¹⁹  The most common requests for interpretation services at Sickkids are Arabic, Mandarin, and Spanish. A referral to social work can be made by the physician if there is a social need identified. Social workers can assist with identifying financial supports, but they do not offer holistic financial services. Only 1 caregiver can stay overnight with their child during a hospital admission, whereas the other needs to arrange their own accommodation. Upon request, families can access a discounted parking fee.

Caregivers of children 0 to 18 years of age admitted to the general pediatric inpatient unit were included. We defined caregivers as people who provided direct care to the child admitted to the hospital, including parents and guardians. There were no exclusion criteria.

Participants were informed about the study at admission with a study letter provided by the unit clerk. Recruitment was conducted by a phone call by the research staff (A.N.) who had no prior relationship with the participants. Limited English proficiency was identified from the child’s electronic medical record and if identified, interpretation services were used. If participants agreed, the recruitment questionnaire was sent electronically with 2 reminder emails. A research assistant completed questionnaires with participants with limited English proficiency using the assistance of a language interpreter over phone.

Recruitment questions included family’s composition, socio-demographics (eg, participant’s gender identity and ethnicity), food insecurity, and household income (Supplemental Table 5). Purposive sampling based on recruitment questionnaire responses was used to enroll participants with a variety of perspectives based on different demographic features, including family annual income, food insecurity status, family composition, immigration status, employment status, number of annual hospital admissions, and use of hospital language interpretation services. Informed consent was obtained by a follow-up phone call. Participants received a $25 gift card for participation in the study interview.

The interview guide was developed based on literature, clinical experiences, and in collaboration with the MFP Working Group. The financial impact scale of the “Impact on Family Scale” was used as a framework to develop our interview guide.²⁰  The MFP Working Group included social workers, pediatricians, family members, a female medical student (A.N.) as well as community legal and financial support staff. We estimated a required 10 to 15 interviews to reach thematic saturation. Forty-five-minute, 1-time interviews were conducted with participants during hospital admission or shortly after discharge (A.N.). Interview training was performed (by Mvd.H.). Interview questions included topics such as participants’ financial stress, access to financial supports (including hospital financial supports and financial support from the government such as tax benefits), tax filing, saving plans, and debt management (Supplemental Table 6). We probed participants to discuss barriers and facilitators to financial service use in the hospital setting and to provide suggestions to improve these services. The interview ended with closed questions regarding participants’ age, employment, immigration status, as well as health status as these factors can impact the benefits available to caregivers.

Descriptive statistics were used to describe the study sample. Interviews were audio-recorded and transcribed verbatim by A.N. using voice to text software.²¹  The transcribed texts were iteratively analyzed with a modified-grounded theory approach that accounted for pre-established topic domains probed by the interview guide by 2 coders (A.N. and Mvd.H.) (Supplemental Table 6).^22,23  This approach also allowed for emerging themes to arise from participant responses. Each coder read all interview transcripts to achieve immersion and gain a sense of the whole. Summative content analysis allowed for the quantification of themes. Both A.N. and Mvd.H. developed a deductive codebook based on the interview guide and interviews. Coders initially coded 2 interviews together, then coded the remaining interviews independently. Transcribed texts were managed using NVivo software.²⁴  Quantitative data were entered in a REDCap database. A consensus approach was used to compare codes and themes on a weekly basis; we used investigator triangulation to ensure trustworthiness as the themes and subthemes were discussed monthly with the team members of the MFP Working Group. Themes and subthemes were consolidated through discussion to summarize and represent the data.

Thirty-seven recruitment questionnaires were emailed. A purposive sample of 18 participants were invited for interviews. Three were no longer interested, and 15 interviews were conducted (Supplemental Fig 1). We decided on thematic saturation when we did not identify any additional themes with further data and analysis.

The mean age (range) of the participants was 41.6 (28–59) years. Eleven participants were female (73%) and 4 belonged to single-parent families (27%). Nine families (60%) reported having trouble making ends meet, and 9 families (60%) reported food insecurity. Four interviews (27%) were conducted with interpretation services in Dari, Farsi, Chinese, and Punjabi. Eleven caregivers (73%) had a child with an underlying chronic health condition and 4 (27%) had experienced 5 or more hospitalizations with their child in the previous year. Table 1 summarizes the characteristics of the participants.

In discussing caregivers’ experiences of financial needs and supports, 3 themes emerged: (1) acute and chronic financial stress, (2) challenges associated with accessing and utilizing financial supports, and (3) ideas for financial services.

Participants expressed financial stress during their child’s hospital admission, including acute and chronic financial stress (Table 2).

Acute financial needs related to their child’s hospital admission included stress related to hospital food and parking costs, loss of work hours, accommodation, transportation costs, and childcare costs for their other children.

One of the most frequently referenced themes was the increased expenses associated with food in the hospital and surrounding area, especially for caregivers who must stay at the hospital for an extended duration (Supplemental Table 7). Seven participants expressed challenges related to parking expenses, especially for multiple hospital admissions, and 5 participants expressed loss of work hours, particularly for participants belonging to single-parent families. Those who traveled long distances to access care at the hospital expressed that a lack of accommodations was stressful.

Overall, caregivers expressed that balancing the needs of a hospitalized child with other financial responsibilities contributed to their financial stress. For instance, one participant expressed, “It is very draining to have a child hospitalized. It takes away from money that is otherwise marked for rent, and for groceries, and utilities, and gas, and so on” (C12).

Participants also expressed chronic financial stress, including needs related to decline in income from parental leave, inflation, out-of-pocket medical costs, challenges related to the COVID-19 pandemic, rent, and mortgage cost.

Four participants discussed income loss during parental leave, with participants worrying about supporting their family while taking time off work to care for their child (Supplemental Table 7). In our study, the participating caregivers were mostly on parental leave, unemployed, or full-time stay-at-home caregivers, whereas their partners were mostly employed. Three participants expressed that inflation, low annual household income, and debt contributed to challenges with everyday and medical expenses. Further, caring for children with chronic conditions was financially challenging, including purchasing uncovered medical equipment with out-of-pocket payments.

Some form of financial difficulty was expressed by all participants, regardless of their annual household income, their experience of food insecurity, or their ability to make ends meet. However, we found that families experiencing poverty were cutting down on other expenses (eg, food and home repair) to afford additional costs relating to their child’s hospital admission.

Participants expressed challenges in accessing and utilizing financial supports. We further characterized these challenges into subthemes of (1) caregiver factors, (2) systemic hospital factors, and (3) systemic government factors (Table 3).

Eleven participants demonstrated a lack of understanding of available government and hospital financial supports and their eligibility criteria (Supplemental Table 7). Many participants (93% aware) were familiar with the Canada Child Benefit, however, other benefits such as the Registered Education Savings Plans (86% aware), Registered Disability Savings Plan for children with complex medical needs (53% aware), and Disability Tax Credit (27% aware) were less known among participants. Participants identified that they learned about financial supports through social workers in healthcare settings, family members and friends, and caregivers’ networks of families with children with chronic conditions.

Chronic financial stresses also impeded 5 participants’ ability to access government benefits that often require initial investments (eg, to prepare necessary documents for benefits or budgeting for savings accounts). For example, when asked if a participant was aware of the Registered Education Savings Plans, 1 participant expressed, “Yes, we know that we have to but currently we are not able to because of our financial situation. […] When I go back to work, I definitely have to start that” (C4). When participants spoke about these stressors, they were often emotional and expressed feelings of sadness and guilt.

Language barriers impeded 1 participant’s access to financial supports, where the partner who spoke English had a greater understanding of financial supports. One participant felt it was his own responsibility, not that of the healthcare organization, to address financial needs, and, thus, the participant’s personal views contributed to his decision to not access financial support.

Most participants (67%) described that they did not receive any hospital financial support during their child’s hospital admission. Participants were unsure about their eligibility for hospital financial support, despite some available supports, like parking fee discounts. For example, 1 participant expressed, “I really don’t know what programs you have [at Sickkids]. I don’t know” (C3). Caregivers of children with chronic conditions more frequently received hospital financial support, including financial support for medical equipment (eg, gastrostomy tube), medications, and transportation.

Although participants primarily relied on social workers for financial support information in the hospital, they felt that their financial circumstances were not always asked comprehensively.

Five participants expressed that the application process for benefits were complex, specifically for caregivers with a child with a chronic health condition. Participants explained that there were multiple forms and that the forms were not accessible or user-friendly. Similarly, filing taxes was a complicated process according to 4 participants in this study and the majority used paid services to file their taxes. For instance, 1 caregiver with a child with complex medical needs expressed, “There’s just too much going on. And the tax code also changes year-to-year. I choose to use an accountant. Unfortunately, that comes with a cost” (C12).

Four participants discussed that the strict, income-based criteria for tax benefits often failed to consider the family’s holistic financial circumstances, and thus, middle-income families were often ineligible despite their financial needs.

Participants also expressed that there were significant wait times and delays in accessing benefits and reported that the amount that they received was often insufficient.

Ideas for financial services included entities for providing guidance for specific financial needs, including offering hospital and government financial supports.

Almost all caregivers in this study expressed that they would be interested in the hospital providing financial services. Two caregivers (13%) expressed that the hospital is not a setting for financial services, and they cared more about the quality of medical care that their child received. For example, 1 participant expressed, “A lot of your expenses come out of your stays in the hospital. So having access to some sort of financial assistance is good, but you kind of want them to focus more on the medical side” (C5). Table 4 outlines caregivers’ ideas for financial services at the pediatric hospital.

Four participants expressed that support with acute costs, including food, accommodations, parking, and transportation, would be helpful. For example, 1 participant expressed, “Sometimes even when we’re in here, I’m spending like $200 easily for myself while we are admitted to the hospital. […] The hospital food is extremely expensive, and even if I walk outside of the hospital, nothing close by is cheap” (C1).

Four participants were interested in receiving assistance with financial applications in the hospital setting, specifically when forms required information about their child’s medical history for disease-specific support. Further, caregivers faced uncertainty in phrasing information on forms to maximize their chances of receiving benefits and worried about potential mistakes without professional guidance.

Three participants mentioned that a financial service that could provide education about hospital and government financial supports and how to access these supports would be useful. One participant expressed that obtaining this information from the hospital setting would be more comforting compared with financial institutions where they worried about exploitation or word-of-mouth because of risk of misinformation.

Three participants highlighted the need for chronic financial services within the hospital to understand families’ financial circumstances and offer personalized services including tax-filing and financial education. For instance, 1 participant expressed, “If there was a financial area where someone could go to, and then sit down and talk to people instead of having a social worker come in and asking 1 question, I feel like there should be a lot more questions involved” (C2).

In pediatric primary care, there has been some experience with embedding financial services in clinics.²⁵  However, offering financial services in a pediatric hospital setting may be different because of the acute aspect of pediatric hospital care. Our study demonstrated high rates of financial stress and a strong interest in receiving holistic financial support among caregivers in a pediatric hospital that provides support and acceptability for financial services in this setting.

Participants’ acute financial stress was most frequently related to obtaining food during their child’s hospital admission. Hospital-based food insecurity among caregivers can impact their ability to be mentally present and have the energy to engage with their child’s medical team.^18,26  In addition, chronic financial stress was reported by all participants, regardless of their annual household income. This may have been related to inflation after the COVID-19 pandemic in Canada, with higher costs for food, rent, and gas. As 1 participant remarked, a hospital admission takes away money that was otherwise reserved for other chronic expenses. These findings are in line with a study by Bassett et al that reported that financial difficulties are commonly seen in families of hospitalized children.²⁷ 

Both caregiver and system factors hindered access to existing financial supports. Participants described a lack of understanding of available hospital supports and government benefits and uncertainty about their eligibility criteria. A major theme was the complexity of application processes for benefits, specifically for caregivers with a child with a chronic health condition. In previous literature, families with children with chronic medical conditions have been found to have increased financial challenges because of medical costs.²⁷  One explanation is that families need to fill in more forms for their medical complex child to obtain financial support to be able to afford medical equipment. Although most participants in this study reported to have filed their taxes, participants expressed that filing taxes is complex and used paid tax services, which can place additional financial strain on families. Our study also demonstrated a lack of awareness of available government benefits, which may suggest that caregivers are not accessing all benefits.

Previous literature demonstrated that caregivers are receptive to screening and addressing social determinants of health in pediatric hospital care.²³  Most participants in our study were interested in the healthcare system obtaining a comprehensive understanding of their financial circumstances to provide tailored guidance to accessing financial supports. Pediatric hospitals may be well-positioned to facilitate access to financial services for families, in part because successfully providing clinical and financial services requires a level of trust and collaboration between service providers and recipients.^18,19  Increasing evidence demonstrates that financial stress can be improved through widely available financial services, including free tax preparation, financial coaching, credit counseling, and employment assistance.^28–30  Other initiatives that hospitals might employ are providing free or discounted meals and free parking for caregivers.

Strengths of our study include the inclusion of participants with diverse backgrounds, including caregivers with limited English proficiency. Our study was limited by its focus on perspectives from only 1 academic pediatric hospital with high rates of chronic pediatric health conditions. We also observed that the caregiver that participated in the interview may not be the caregiver that is most knowledgeable about the family’s financial circumstances or services. There may also be different opinions between nonresponders and those who chose to participate in the study. Although we reached thematic saturation, additional themes may exist that did not emerge. Four interviews were done in languages different than English; there may be cultural themes on accessing financial support that were not identified. Finally, all authors were involved in the MFP Working Group and shared a common interest in addressing the social determinants of health in clinical care and that may have also influenced how the data were interpreted. However, authors’ biases were monitored and acknowledged through discussion and self-reflection throughout the study duration.

Our study highlighted acute and chronic financial stress in caregivers with a child admitted to the hospital, indicating a need and interest for financial services in a pediatric hospital care setting. Participants in this study appeared to be receptive to hospital-based financial services. Future studies should examine the implementation, impact, and cost-effectiveness of hospital-based financial services. These services can incorporate ideas discussed by participants, including assistance with applying for benefits, free tax-filing services, and education about available financial government supports.

We thank the Medical-Financial Partnership Working Group, including David Brownstone, Moein Habibi, Lee Ann Chapman, Karima Karmali, Rachael Devenyi, Maureen Fair.