Caregiver Perspectives on Social Needs Screening and Interventions in an Urban Children’s Hospital

The socioecological framework guided our qualitative approach exploring the influence and barriers surrounding screening and resources on individual, interpersonal, and community levels.²⁷  Deductive analysis was used to assess screening acceptability, whereas inductive analysis was used to identify barriers to resource engagement.

Our study occurred from April to August 2021, 1 year after standardized HRSN screening implementation on the pediatric hospital medicine (PHM) service at an urban tertiary care children’s hospital. Our hospital serves an urban pediatric population that is approximately 56% Hispanic, 29% Black, 9% White, and 4% Asian, with 26.4% below the poverty line, with more than double the national average, with majority enrolled in public insurance.²⁸  Screening was implemented to create a standardized approach to address the high burden of HRSNs in our community.²⁹  This study was reviewed and approved by our institutional review board.

Residents or physician assistants distributed paper screeners to caregivers whose children were admitted to PHM. This 10-item standardized questionnaire, adapted from the Health Leads Screening Toolkit³⁰  and distributed in our primary care clinics, screens for HRSN related to housing, food security, finances, transportation, childcare, legal issues, and safety and asks if caregivers desire assistance with identified concerns. Screeners were completed independently, and care teams discussed positive screens with the family. If interested, caregivers were offered a paper packet with local resources based on hospital ZIP code in English or Spanish generated from an online community resource directory called NowPow³¹  and/or an inpatient SW consult. If the child’s pediatrician was within our network, a community health worker (CHW) referral could be offered on discharge (Supplemental Information; Supplemental Fig 1; Supplemental Fig 2).

Caregivers, defined as patients’ legal guardians, met inclusion criteria if they (1) screened positive for at least 1 HRSN, (2) were admitted to PHM, and (3) listed English or Spanish as their preferred language. Eligible caregivers were recruited via phone by 1 of 2 physician research team members not involved in their care at least 2 weeks following discharge, with informed verbal consent. Participants were placed in a lottery for a $30 gift card.

We created a semistructured interview guide adapted from another study involving outpatient HRSN screening follow-up, which included rating scale questions to measure participants’ experiences.¹⁸  The guide was designed to explore 5 domains: (1) perspectives on inpatient screening, (2) expectations of assistance, (3) opinions on resources provided, (4) progress to resolution of need, and (5) dissemination of information among personal network. The guide was pilot tested and, based on feedback from 5 caregivers meeting inclusion criteria and our institution’s family council, language was simplified, and rating scales were converted into open-ended questions to prevent leading and promote open dialog.

Semistructured interviews with English- and Spanish-speaking caregivers were conducted telephonically by 1 of 2 physicians fluent in the caregiver’s preferred language and not involved in their care, 2 to 4 months after discharge to allow families time to reacclimate postdischarge and follow up on recommended resources. Interviewers were trained on the fundamentals of qualitative interviewing and navigating the interview guide, with practice interviews provided. Data on screening results and interventions implemented during admission, including documentation of resources provided, SW consults, and CHW referrals were collected via review of the electronic health record to retrospectively assess for interventions caregivers did not recall receiving. Caregivers were recruited monthly until coding physicians felt thematic saturation was achieved, ultimately including screens from April to August 2021.

All interviews were recorded, transcribed via Amazon Web Services, deidentified, and translated if applicable via manual review by a fluent Spanish-speaking team member. A coding schema was designed based on the interview guide, which was iteratively revised after additional interviews. The interviews were analyzed using rapid qualitative methodology.^32–34  Two physician team members independently coded transcripts, summarizing data into templates based on interview guide domains. The lead author then transcribed these data into a rapid qualitative analysis matrix via Excel, which was reviewed for accuracy with the coding team, who then independently identified emerging themes. Peer debriefing was used with a final review to resolve discrepancies through consensus.

A total of 63 caregivers screened positive for at least 1 need from April to August 2021. Four were excluded because of language preferences, 1 declined to participate, and 38 could not be reached after 2 attempts. We completed 20 interviews, approximately 15 to 25 minutes long, with 14 English-speaking and 6 Spanish-speaking caregivers. Patient and caregiver demographics and screen results obtained from the electronic health record are included in Table 1. Four main themes are identified in this study (Table 2).

We identified 1 theme among perspectives on inpatient screening: all caregivers were supportive of inpatient screening. One father commented on the importance of addressing HRSNs, especially amid the pandemic, imploring providers: “Continue to reach out to people the way you guys do because there’s a lot of people that really need extra help and extra care. These are trying times and people might speak with you guys and answer certain things they don’t answer other places, so that could help save a life.” (Participant #11)

Some caregivers offered the same caveat shared by many scholars in the field: inpatient screening is appropriate if it ultimately benefits the patient. Caregivers noted that in the event of a positive screen, providers should ask questions about the screen item and subsequently offer appropriate services.

Additionally, although all caregivers found inpatient screening acceptable, some emphasized the unique value of screening in the hospital. A subset noted the hospital may be an opportune place to capture HRSNs, with some caregivers expressing surprise that their HRSNs could be addressed during hospitalization. One caregiver noted: “I don’t typically see those types of questions being asked when you visit hospitals, so I think that’s great just to make sure people have what they need. I think that it’s always great to be able to like partner with or around resources that are needed.” (Participant #19)

Caregivers’ expectations for assistance with their needs varied widely. Moreover, although most caregivers felt responses to positive screens helped them address their need, the degree of assistance varied and their HRSNs were often not entirely resolved. However, 1 theme was identified: many caregivers felt the process of screening itself had benefits to their care. More specifically, many highlighted the value of providers being aware of families’ social situations. One caregiver reported that understanding families’ social context could help providers understand medical and social factors that contribute to illness: “Because I feel like health care should be overall and not just dealing with what’s going on right now. Sometimes part of being sick can be led by environmental reasons in the world.” (Participant #5)

Additionally, some caregivers commented that understanding the dynamics at home could help prepare families for safe and effective discharge: “[The screener] can help the doctor understand the patients’ needs when they get home because they have to go home at some point.” (Participant #3)

Furthermore, many felt the screener was an easier means for families to communicate needs. Some cited the screener as particularly valuable for families unaware of how to approach their social challenges or ask for help, especially in the acute setting.

We identified 1 theme regarding caregiver opinions on the resource packet. Although not all caregivers recalled receiving the packet, those that received it described it as “beneficial,” “informative,” and “resourceful.” One caregiver noted she appreciated having a provider explain the packet and discuss the listed resources applicable to her needs. Another parent similarly commented on its ease of use and its value as a long-term resource for potential future challenges:

“I was actually excited to know there was so much help in my area. [Using the packet] is pretty easy. I mean once you want to call the numbers, everything is basically laid out for you. The physicians that assisted me - they highlighted a special area that I was looking for…After my mother passed, I was able to use it again to find legal help. I can actually use the packet any other time to do any other thing if necessary.” (Participant #14)

Additionally, another caregiver noted that physical paperwork made it easy for information to be shared with friends and family who may also have HRSNs. However, the majority of caregivers noted they did not share information learned with others.

Although some caregivers appreciated receiving tangible, visual paperwork, others anticipated challenges for families with different backgrounds, including literacy barriers. One caregiver commented that families who cannot easily navigate the internet may not be able to follow up on listed resources. Finally, 1 father who lived in a neighboring suburb noted many of the resources only applied to city residents.

We identified 1 theme related to SW engagement: a desire for more longitudinal care. Although some caregivers found SW consults helpful, many expressed interest in additional follow up by the SW team when being an inpatient and after discharge. One mother who was referred for legal assistance through inpatient SW but struggled to connect to a lawyer because of challenges contacting SW after discharge. One father also noted that the COVID-19 pandemic may have had a negative influence, reducing the opportunity for extended in-person contact with SW.

Many caregivers wanted to be provided options for resources, but more importantly wanted assistance with navigating those options, especially among the Spanish-speaking caregivers. For some, this would manifest as a point person who they could follow up with, while an inpatient but also after discharge. One mother commented: “They were actually really helpful, but I would’ve wanted a little bit more help after. Rather than just sending me to just 1 spot and having me do like a scavenger hunt, I would like where I could tell them my situation and from there, they could help me directly.” (Participant #4)

Similarly, another mother proposed a “more direct intermediary” between patients and social service agencies to allow collaboration, guided exploration of options, and follow up. She offered an example sequence: “Let’s see if we can do this or this. Let’s see if we call this office or connect you with an appointment. Look I made such an appointment. Or I will make this appointment. Which day works the most for you?” (Participant #6)

Despite interest in additional follow up, inpatient connection to CHWs on discharge was limited. Among all 20 study participants, only 1 had received a CHW referral. Nevertheless, this caregiver endorsed a fruitful, longitudinal experience with a CHW: “After filling out the form a [CHW] helped me find resources…She helped me with the housing situation, immigration and gave me resources for food and Pampers for the baby. And it also helped me find psychological therapy.” (Participant #15)

To our knowledge, this is the first qualitative study to explore perspectives of both English- and Spanish-speaking caregivers on inpatient HRSN screening and interventions. Four central themes emerged: (1) All caregivers expressed support for inpatient HRSN screening. (2) Many caregivers cited inpatient screening as an effective means to help families while hospitalized and help providers better understand their social situation. (3) For those who recalled receiving a resource packet, they found it useful and at times shared resources with others. (4) Finally, many caregivers expressed interest in longitudinal support, such as contact by a SW or CHW after discharge. Given limited follow-up data on inpatient HRSN screening,^9,12  these results offer unique insight as more children’s hospitals develop similar practices.

First, our study extends existing data that demonstrate support for inpatient screening and is consistent with well-studied outpatient acceptability data.^15,35  Thus, the transient and higher stress nature of hospitalization may not significantly influence caregiver perceptions of HRSN screening, similar to how family education on topics such as diabetes have been proven to be just as effective in the inpatient setting as they are in the outpatient setting.³⁶  This finding suggests inpatient screening may be an acceptable method to approach HRSNs for children’s hospitals with comparable infrastructure to address positive screens. Additional research on alternative models of approaching positive screens may be warranted to identify the most acceptable and effective strategies.

Second, caregivers cited potential benefits of screening for themselves, their families, and their community. Most notably, many caregivers reported the screener as an easier means of communicating needs and offering providers insight into their social situation. Qualitative studies on HRSN screening across clinical settings have focused on caregivers’ feelings of stigma, comfort, or appreciation rather than why the screening process offers value, if any, in the inpatient setting.^13,14,37  Our findings suggest screening may allow inpatient medical teams to better understand social histories in a productive way. Although there have been evolving frameworks on obtaining thorough social histories, there is limited literature on the interplay between obtaining a social history and addressing positive HRSN screens.^6,38  We need to therefore ensure that our trainees and health care team are appropriately educated on how to approach these issues in a respectful manner.

Third, screening for HRSNs without an ability to provide resources to address identified needs has been highlighted as a barrier to screening.³⁹  SW currently stands as the most common form of HRSN intervention in hospitals across the country.^40,41  However, SW consults may be costly and time-intensive in a short hospital stay.⁴²  Although funding for additional social workers is warranted nationally given the high burden of needs amid the SARS-CoV-2 pandemic,²²  there is a short supply of available social workers.^20,23  Our findings show that resource packets may be a low-cost and high-yield method of addressing HRSN. Though this feature was not used during our study, resource lists made from online resource directories can often be easily tailored to the ZIP code of a family’s residence. This may also improve the shareability of this resource and allow more interpersonal-level impact. Thus, resource packets with comprehensive yet easily updated information may be a more practical alternative to SW intervention in certain circumstances. Additionally, although some caregivers appreciated receiving tangible resources, there is new evidence on the benefit of offering similar electronic resources where means allow.²⁵ 

Finally, there is growing literature to advocate for longitudinal support for HRSNs, including those identified inpatient.²⁵  Our study findings suggest that additional touchpoints by SW while inpatient may lead to improved caregiver satisfaction. Additionally, establishing continuity of social care by creating a SW or CHW network to follow up with on discharge may result in improved efficacy of HRSN screening and ultimately improved outcomes, especially among Spanish-speaking caregivers who expressed a greater desire for assistance navigating resources. Given reassuring data on effective care linkage after implementation of CHW networks in the outpatient setting,⁴³  developing a system to ensure families with HRSNs captured in the inpatient space are connected with a similar CHW network could allow more families with HRSNs to reach resolution and address more community-level barriers.

This study had several limitations. Because all virtual interviews were conducted by physicians, there may be a component of observer bias because participants may feel pressured to offer more positive feedback when speaking to clinicians, especially when asked if they support continuing an existing screening program. The interviews were conducted virtually and not conducted by members of their previous care team to limit this bias. Our interviews were also performed a few months after discharge, which may have resulted in recall bias regarding the screening process and support they may have received. Though fewer Spanish-speaking participants were recruited compared with English-speaking counterparts, this study is the first to investigate caregiver opinions in the inpatient setting in a lower income neighborhood in both English and Spanish, with findings supporting screening inpatient. Although our findings are not intended to represent caregiver perspectives in all health systems, our data can effectively guide screening practices in populations with a comparably high risk for HRSN.

Based on our findings, caregivers often support inpatient screening as a means for providers to optimize comprehensive care that explores how HRSNs influence health. Although inpatient SW and resource packets may be helpful, longitudinal support after discharge may improve the effectiveness of HRSN interventions, patient outcomes, and caregiver satisfaction.

The authors thank Jessica Haughton, Lourdes Malena Tapia Ochoa, Fahmida Islam, Sandra Braganza, and Patricia Hametz for their support of this project.