Barriers and facilitators to caregiver comfort with health‐related social needs data collection in the pediatric clinical setting

Abstract

Objective

To identify barriers and facilitators to family‐level comfort with health‐related social needs (HRSN) data collection and documentation in the pediatric clinical setting.

Study Setting and Design

This qualitative study was nested within a pragmatic randomized controlled trial on social care integration in the pediatric clinical setting. We used a hybrid random‐purposive strategy to sample 60 caregivers of pediatric patients ages 0–25 presenting at two primary care clinics and one emergency department affiliated with a large pediatric healthcare system between September 2022 and 2023. We developed an interview guide and codebook to explore caregiver experiences with and perceptions of HRSN data collection and documentation.

Data Sources and Analytic Sample

We conducted semi‐structured telephone interviews in English and Spanish with 60 caregivers. Interviews were conducted until thematic saturation was achieved and were transcribed verbatim. We used thematic analysis with constant comparison to code interviews and identify emerging themes.

Principal Findings

Our analysis yielded several barriers to caregiver comfort with HRSN data collection and documentation: (1) stigmatization by providers and medical staff and risk of child protective services involvement, (2) providers presuming connections between documented HRSN and medical complaints, (3) permanency of documented HRSN, (4) visibility of HRSN data by pediatric patients and caregiver proxies, and (5) fear that documented HRSN could negatively impact future insurance cost and coverage. We identified four facilitators to caregiver comfort: (1) clear communication regarding the purpose of HRSN data collection and use, (2) respect for caregiver autonomy, for example, by providing the option to decline participation, (3) training of data collection personnel to ensure privacy and compassionate care, and (4) consideration of timing within the medical visit, delaying assessment until medical concerns are addressed.

Conclusions

Caregiver‐identified barriers and facilitators should be considered in clinically based HRSN data collection efforts to ensure that these programs are equitable and family‐centered.

What is known on this topic

• There is policy and payer pressure to screen for and address families' health‐related social needs (HRSN) in the pediatric clinical setting.

• Previous research has identified numerous barriers to caregiver comfort with HRSN screening and interventions to address disclosed needs, including fear of stigma and child protective services involvement.

• There is limited evidence on caregiver concerns specific to HRSN data collection and documentation as well as pragmatic, family‐driven solutions to address sources of discomfort.

What this study adds

• Caregiver concerns about HRSN data collection and documentation include stigmatization, physicians presuming connections between HRSN and medical complaints, permanency and visibility of HRSN documentation, and negative impacts on insurance coverage.

• Clear communication, respect for caregiver autonomy, training of data collection personnel, and consideration of timing within the medical visit may facilitate caregiver comfort with HRSN data collection and documentation.

• These barriers and facilitators to caregiver comfort should be considered in the design of HRSN programming to ensure that these efforts are equitable and family‐centered.

1. INTRODUCTION

The fundamental role of health‐related social needs (HRSN) in children's short‐term and lifelong health has gained increased recognition in recent years.1, 2, 3, 4, 5, 6 As a result, interventions in the pediatric clinical setting that assess and address HRSN, such as housing instability and nutritional insufficiency, have proliferated.7, 8, 9 Given the interrelationship between a child's health and their social environment, clinically based HRSN interventions in pediatrics are commonly aimed at evaluating family‐level HRSN and facilitating caregiver referrals to community‐based or internal programs that address disclosed needs.7, 10 Documentation of healthcare‐collected HRSN data has been linked to Medicaid reimbursement, U.S. News & World Report health system rankings, and Joint Commission requirements in a growing number of clinical settings, spurring health systems to confront challenges related to collecting and reporting HRSN data in a way that meets regulatory and payer requirements while attending to patient and family needs, concerns, and safety. ¹¹ To this end, several approaches to HRSN elicitation and data collection have emerged. Social risk screening, which entails deficit‐based questions about caregivers' current social circumstances, has historically been the dominant approach to HRSN assessment. ¹² Social need‐based screening, which elicits caregiver desire for resources without requisite disclosure of risk, is increasingly employed in HRSN intervention protocols in response to concerns about the family centeredness of social risk screening and evidence that some families who desire resources may be missed by risk‐based tools.13, 14, 15, 16 Across approaches, however, there is limited evidence on how best to collect HRSN data to maximize caregiver privacy and enhance comfort with participation.

Despite the importance and overall acceptability of HRSN interventions in the pediatric clinical setting, HRSN disclosure is often associated with caregiver concerns regarding stigma or unintended negative repercussions, particularly for caregivers who are low income and minoritized.17, 18 For example, numerous studies have described fear among caregivers that disclosing a poverty‐related HRSN such as food or housing insecurity could result in a report to child protective services and subsequent removal of the child from their care.19, 20, 21 Furthermore, emerging evidence suggests that how and where HRSN data is recorded may play a role in caregiver discomfort.22, 23, 24

Previous literature has highlighted numerous barriers to caregiver comfort with HRSN screening and intervention. However, there has been limited focus on concerns specific to HRSN data collection and documentation as well as caregiver‐driven solutions to enhance comfort with social care in the pediatric primary care and emergency department settings. The goal of this qualitative analysis is to explore caregiver perceptions regarding HRSN data collection and related data sharing with payers and identify caregiver‐suggested strategies to increase family‐level comfort with HRSN screening and interventions.

2. METHODS

The Socially Equitable Care by Understanding Resource Engagement (SECURE) study is a pragmatic randomized controlled trial aimed at understanding factors that affect engagement with social resources in the pediatric emergency department (ED) and primary care settings. The quantitative portion of this study compared caregivers' desire for and engagement with social resources when a geographically searchable electronic resource map (CommunityResourceConnects.org) and individualized resource navigation was offered (1) alone, (2) following a menu of social resources, or (3) following social risk screening. The qualitative component of the study, presented here, explored caregiver experiences with SECURE procedures, as well as overall preferences and experiences with receiving social care in the pediatric clinical setting.

2.1. Participant recruitment and data collection

Recruitment for the larger SECURE study began in March 2022. Interview participants were sampled from those who consented to the larger study between September 2022 and September 2023; we collected quantitative data for 6 months prior to initiating qualitative data collection to allow for preliminary and process‐related findings to inform refinement of qualitative data collection instruments. We recruited caregivers older than 18 years and accompanying patients ages 0–25 years old at three study sites: an urban pediatric ED and two pediatric primary clinics, one urban and one suburban, intentionally selected for demographic diversity. The urban pediatric ED saw 97,286 patient visits in 2023, 60.2% of whom were publicly insured. Fifty‐four percent of patients identified as Black, 15.8% identified as Hispanic or Latino, and 4% preferred a language other than English. The urban primary care clinic saw 21,400 patient visits, among which 73.6% were Medicaid insured, 34% identified as Black, 21.5% identified as Hispanic or Latino, and 20% preferred a language other than English. The suburban primary care site had 49,890 patient visits in 2023: 25.7% were Medicaid insured, 5.5% identified as Black, 17.5% identified as Hispanic or Latino, and 11.7% preferred a language other than English. Study participants completed a randomization arm‐specific survey assessing social risk or need and were offered navigation of emergent HRSN as well as post‐discharge telephone‐based resource navigation. We obtained consent to contact each participant for qualitative interviews. We contacted a random sample of participants for an interview among those who consented, continually monitoring representation across demographic and study variables. Following 8 months of random sampling, we transitioned to a purposive sampling approach to achieve a representative sample, intentionally oversampling from minoritized subgroups such as families who were native Spanish speakers. Interviews were conducted in English and Spanish only, as nearly 90% of participants who preferred a language other than English selected Spanish.

We developed a semi‐structured interview guide based on early quantitative findings, the Health Equity Implementation Framework (HEIF), and the Integrated Behavioral Model (IBM) (Figures 1 and 2).25, 26 The HEIF was selected as the theoretical framework informing SECURE's qualitative component as it accounts for multilevel factors that influence the implementation of clinically based interventions aimed at addressing health disparities. ²⁵ The IBM, an individual‐level behavior change theory, guided our exploration of how attitudes, perceived norms, and perceived behavioral control affect caregiver comfort, acceptance, and use of clinically based HRSN screening and social resources. ²⁶ The semi‐structured interview guide included three primary topic areas: (1) caregiver experiences participating in the SECURE study intervention, (2) caregiver experiences getting help from community resources in general, and (3) caregiver perspectives and preferences on receiving social care in the pediatric healthcare setting, including an exploration of sentiments related to HRSN data collection, documentation in the pediatric electronic medical record (EMR), and internal and external data sharing. We tested and refined our interview guide through focus groups in English and Spanish to ensure that questions were acceptable and understandable to participants and elicited relevant information to the study's research questions.

FIGURE 1.

Health Equity Implementation Framework for the SECURE study. SECURE, Socially Equitable Care by Understanding Resource Engagement.

FIGURE 2.

Integrated Behavioral Model framework for the SECURE study. SECURE, Socially Equitable Care by Understanding Resource Engagement. Correction added on 06 March 2025, after first online publication: Figure 1 and 2 have been updated.

We contacted caregivers by telephone 30–45 days post‐enrollment to allow time for resource engagement and resolution of any acute medical complaints. Participants not reached after three contact attempts were considered lost to follow‐up. After obtaining verbal consent, masters‐level research coordinators and research assistants with backgrounds in public health and training in qualitative interviewing techniques conducted semi‐structured interviews lasting between 30 and 50 minutes. Interviewers were not previously known to participants. Research staff who are native Spanish speakers conducted interviews with caregivers who preferred Spanish. Following each interview, participants were provided with a $20 e‐gift card. Data collection continued until thematic saturation was reached and proportional representation was achieved across key demographic and intervention characteristics.

Interviews were recorded, de‐identified, and transcribed verbatim in the source language by a contracted transcription service (DataGain, Secaucus, NJ). ²⁷ Following transcription, the interviewers reviewed and cleaned the qualitative interview transcripts to ensure consistency with the recordings. All study procedures were reviewed and deemed exempt by the Children's Hospital of Philadelphia Committee for the Protection of Human Subjects.

2.2. Qualitative data analysis

The same study team members who conducted interviews coded interview transcripts in NVivo 12 using an integrated inductive and deductive approach. ²⁸ An initial codebook was developed based on the interview guide and subsequently modified as new themes emerged from the data. Twenty‐six transcripts were double or triple coded to ensure interrater reliability over time. The study team met twice per month along with the Principal Investigator to review each coded transcript, assess interrater reliability, resolve coding disagreements, and revise code definitions. Bilingual research staff coded Spanish transcripts using the English codebook and the same constant comparison method. Iterative reflexive memos and analytic matrices were employed to identify emerging themes from coded data.

3. RESULTS

Among 3947 participants in SECURE, 2778 (70.4%) agreed to be contacted for a semi‐structured interview. We contacted 262 caregivers between September 2022 and September 2023, among whom 60 consented to participate. These 60 caregivers were proportionally representative of the full sample with the exception of participants who preferred Spanish who were intentionally oversampled (Table 1). Caregivers interviewed predominantly identified as female (n = 52, 86.7%) and were between the ages of 25–44 (n = 49, 81.7%). A total of 49 interviews (81.7%) were conducted in English, and 11 (18.3%) were conducted in Spanish. Twenty (33.3%) caregivers identified as Hispanic or Latino. Most participants identified as either Black/African American (n = 23, 38.3%) or White (n = 20, 33.3%), were Medicaid insured (n = 42, 70.0%), and reported previous use of social resources (n = 45, 75.0%). Interview participants were distributed evenly across randomization arms.

TABLE 1.

Participant demographics.

	Study participants: 3949	Interview participants: 60
	N (%)	N (%)
Preferred language
English	3601 (91.3)	49 (81.7)
Spanish	297 (7.5)	11 (18.3)
Other	51 (1.2)	0 (0)
Age (years)
Under 18	31 (0.8)	0 (0)
18–24	291 (7.4)	5 (8.3)
25–34	1475 (37.4)	22 (36.7)
35–44	1589 (40.2)	27 (45.0)
45–54	436 (11)	2 (3.3)
55–64	97 (2.5)	3 (5.0)
65–74	27 (0.7)	1 (1.7)
75 or older	3 (0.1)	0 (0)
Gender
Female	3251 (82.3)	52 (86.7)
Male	676 (17.1)	8 (13.3)
Trans male, trans female, genderqueer, different identity, or prefer not to answer	22 (0.6)	0 (0)
Hispanic/Latino
Yes	664 (16.8)	20 (33.3)
Race
Black/African American	1399 (35.4)	23 (38.3)
White	1659 (42.0)	20 (33.3)
American Indian or Alaska Native	15 (0.4)	1 (1.7)
Asian	343 (8.7)	3 (5.0)
Native Hawaiian or Other Pacific Islander	14 (0.4)	0 (0)
Other	423 (10.7)	11 (18.3)
More than one race	95 (2.4)	2 (3.3)
Insurance status
Medical assistance/Medicaid	2388 (60.5)	42 (70.0)
Private	1455 (36.9)	17 (28.3)
No insurance	57 (1.4)	0 (0)
Unknown	30 (0.8)	0 (0)
Other	16 (0.4)	1 (1.7)
Highest level of school attended
No school	27 (0.7)	2 (3.3)
Elementary school	82 (2.1)	3 (5.0)
Middle school	41 (1.0)	3 (5.0)
High school	1411 (35.7)	21 (35.0)
College	1533 (38.8)	19 (31.7)
Graduate school	855 (21.7)	12 (20.0)
Previous use of community or government social resources
Yes	2636 (66.8)	45 (75.0)
Enrollment location
Emergency Department	1996 (50.6)	33 (55.0)
Primary Care	1951 (49.4)	27 (45.0)

Our analysis yielded several barriers and facilitators to caregiver comfort with HRSN data collection and documentation (Tables 2 and 3).

TABLE 2.

Barriers to family‐level comfort with HRSN ^a data collection and recommendations for practice.

Barrier	Representative quote	Recommendation for practice
Stigmatization	“I am a little bit distrusting. Because that information could be used very easily against parents, depending on the situation. I've seen a lot of that happen.” [Participant 8288]	Shift documentation to focus on interventions provided rather than HRSNs disclosed
	“It [HRSN documentation] allows for a person to have a predetermination or like a preconceived notion of you based upon what you're receiving.” [Participant 3023]
	“I think answering a lot of personal questions is kind of uncomfortable, especially if you like kind of want your doctor to think of you one way and your answer might make them think of you a different way.” [Participant 8061]
Undue linkage of medical complaints to HRSNs	“Because I could be in there for something like constipation and then you see something like I couldn't afford food, and think I'm feeding my son bricks and then they got constipation.” [Participant 6253]	Avoid documenting HRSNs in the problem list or other sections of the EMR b that are immediately visible
Permanency of documentation	“…I think that's only for a little point in time. Now, that's gonna be a forever thing. I feel like once they've typed something in the baby's chart that's a forever thing.” [Participant 8224]	Provide frequent opportunities for caregivers to update or remove HRSN information in the EMR
	“One [HRSN data] is out there, you really can't take it back.” [Participant 3076]
Patients or caregiver proxies viewing family‐level HRSN data	“That's bad, And that doesn't separate what the parent is experiencing from the child. And so, I believe that the child has to live on with that type of stuff in medical care and that's not cool.” [Participant 8229]	Create procedures for documentation of HRSN that is not visible to pediatric patients or proxies
	“In a lot of like custody situations, that information is open to the other parent or the courts, and it shouldn't necessarily always be depending on the situation.” [Participant 8288]
	“I don't want my child to actually know what's going on and make them feel like it's their fault when it's not.” [Participant 8538]
HRSN data being used to negatively impact future insurance coverage	“Do the insurance companies really need that [HRSN data]? They probably just want it so they can figure out how much they're charging you for stuff and what they're covering.” [Participant 7682]	Clarify at the time of data collection whether data will be shared with insurers and if so, expectations about how that data will be used
	“I just feel like that's another way for insurance companies to like not cover and not help patients. I don't know. That's being shady to me.” [Participant 7601]
	“I don't know if they can use [HRSN data] against you later on. You know raise your insurance rate or deductible, deny anyone insurance.” [Participant 8100]

^a HRSN, health‐related social needs; EMR, electronic medical record.

^b Electronic medical record (EMR).

TABLE 3.

Facilitators to family‐level comfort with HRSN ^a data collection and recommendations for practice.

Facilitator	Representative Quote	Recommendation for Practice
Clear communication	“Communication is key. So, the more communication is better, like, when people know what's going on. ‘Would you like… I'm gonna ask these questions, would you like me to include the answers in the chart?’” [Participant 3854]	Provide through verbal or text introduction an explanation of the purpose of HRSN data collection as well as who data will be shared with and why
	“More information I think is always better… to the extent that [our hospital] would be able to say ‘they are requiring this information, here's what they're doing with it.’ Just more transparency rather than less.” [Participant 7782]
Respect for caregiver autonomy	“Because we have the option to answer or don't answer so it's not like we're forced, you know… I don't think it should be a requirement… I feel like that's getting too personal, you know.” [Participant 2829]	Allow caregivers to opt out of HRSN data collection and/or documentation at each visit
	“If there's a way to put [HRSN data] in and then if there's a way for the patient's family to take it out when they want to take it out or like have some control over that, maybe that's a better option.” [Participant 3076]
Training	“I think it could be somebody that has had some form of training in talking to people and understanding… I do think that it's not—it shouldn't be something that's just like thrown around and asked just to be something that's asked. Like with—like that's the thing is you wouldn't want people to feel like, oh, they don't actually care.” [Participant 7601]	Train personnel engaged in HRSN data collection in trauma‐informed care; ensure that staff understand the sensitivity of HRSN data
	“You don't know who's looking at your medical records besides your doctor… they might not have proper training or the empathetic skills to handle a situation, or the discretion.” [Participant 3295]
Situational awareness	“If there's a serious medical diagnosis, nobody wants to talk about community resources unless they're about to be affected. So I think that should also be factored into the discussions. You know, if someone just literally received like a life changing diagnosis, you wanna sort of calibrate or recalibrate whether or not that meeting even needs to take place or what, you know, how you even approach that meeting or if that meeting should be held.” [Participant 7435]	Design HRSN data collection protocols either with the flexibility to be responsive to each unique clinical encounter or universally shifting assessment to the end of (or after) the visit
	“Usually when you come in, it's right after an initial scare of something that you're worried about and that's the reason you're bringing your kid in… so I think the best time would be like when the nerves are calming down so when they're able to be like okay we're okay, we're being discharged…” [Participant 2536]
	“Things had been stabilized and we were just waiting for a room at that point when she came in to ask about the [HRSN] survey. I guess each situation is different but just making sure that it seems like a calm environment first, you know, between the child and parent before asking.” [Participant 7569]

^a HRSN, health‐related social needs.

3.1. Barriers to caregiver comfort with HRSN data collection

3.1.1. Stigmatization and CPS involvement

Many participants felt that past and present HRSNs documented in their child's EMR made them more vulnerable to judgment from clinicians. One caregiver said, “I am a little bit distrusting. Because that information could be used very easily against parents, depending on the situation. I've seen a lot of that happen” [Participant 8288]. Another caregiver described this fear of judgment based on documented HRSNs in saying, “I just don't like stuff that could put you into a category” [Participant 6253].

Many participants believed that clinicians would judge their abilities as a caregiver, assuming that they lack the motivation to address their families' HRSNs. Many caregivers were concerned that HRSNs documented in the EMR increased the likelihood of being reported to child protective services for issues related to poverty. One caregiver said, “Nowadays, CPS likes to get involved in everything and anything. So that would scare me because I don't want them to be like, ‘Oh, you're not able to be a right guardian for your kids, so we're going to take them out.’ You really can't take a chance like that” [Participant 2536].

3.1.2. Undue linkage of medical complaints to HRSNs

Some caregivers interviewed were concerned that documentation of HRSN data in the pediatric EMR would lead clinicians to connect those HRSNs with their child's unrelated medical complaints. Caregivers worried that access to their HRSN data in the EMR would, consciously or unconsciously, affect the provider's diagnosis and care plan. As one caregiver explained, “Because I could be in there for something like constipation and then you see something like I couldn't afford food and think I'm feeding my son bricks and then they got constipation” [Participant 6253].

3.1.3. Permanency of documentation

Many caregivers expressed concern that HRSN data would remain in their child's EMR as a “permanent stain” that would follow the family and child long term, even if recorded HRSNs are no longer present. One caregiver described the discordance between the transient nature of HRSNs and the perceived permanency of EMR documentation by saying, “…I think that's only for a little point in time. Now, that's gonna be a forever thing. I feel like once they've typed something in the baby's chart that's a forever thing” [Participant 8224].

3.1.4. Visibility of documentation by pediatric patients and caregiver proxies

Some caregivers were concerned that their child may see family‐level HRSNs documented in their own EMR, resulting in uncomfortable conversations or a shift in how they perceive their home life. One caregiver explained, “I don't want my child to actually know what's going on and make them feel like it's their fault when it's not” [Participant 8538]. Several caregivers also worried that proxies, including other caregivers or other family members with access to their child's EMR, may view HRSN information that they disclosed. As one caregiver explained, “In a lot of like custody situations, that information is open to the other parent or the courts, and it shouldn't necessarily always be depending on the situation” [Participant 8288].

3.1.5. Negative effects on insurance cost and coverage

An additional barrier to caregiver comfort with clinically based HRSN data collection was worry about insurance companies' access to this information. Some caregivers expressed general unease about the idea that HRSN data could be shared with payers, believing that “nothing good could come from that” or that it could negatively affect them in the future [Participant 7435]. Others shared specific concerns related to the cost of care and future coverage. Several caregivers were concerned that if HRSNs were discussed during a medical appointment and documented in the EMR, payers would charge them for a different or supplemental visit type. Some caregivers also worried that documented HRSNs would cause payers to assess them as higher risk and therefore more costly to insure, affecting their cost of future coverage. One caregiver said of payer requests for HRSN data, “They probably just want [HRSN data] so they can figure how much they're charging you for stuff and what they're covering” [Participant 7682]. Furthermore, some caregivers said that they would be less forthcoming about their HRSNs if they were aware that HRSN data may be shared with insurance companies.

3.2. Facilitators to caregiver comfort with HRSN data collection

3.2.1. Clear communication

Many caregivers interviewed felt that clear communication about all aspects of HRSN data collection and documentation would enhance comfort with participation in clinically based HRSN programs. Specifically, caregivers said that an explanation of why HRSN data is collected, where it will be documented, and who will be able to see it would make them feel comfortable. One caregiver described this facilitator by saying, “Communication is key. So, the more communication is better, like, when people know what's going on. ‘…I'm gonna ask these questions, would you like me to include the answers in the chart?’” [Participant 3854]. Some caregivers emphasized the importance of transparency around data sharing with insurers, in particular, saying that “More information I think is always better… to the extent that [the hospital] would be able to say ‘they are requiring this information, here's what they're doing with it’” [Participant 7782]. Caregivers also highlighted the value of communicating that HRSN assessment questions are asked universally of all caregivers to ensure that they do not feel that they are being singled out because a clinician perceived them to be in need of help.

3.2.2. Respect for caregiver autonomy

Caregivers also suggested that maximizing autonomy over their HRSN information would facilitate comfort with data collection and documentation. For example, several participants recommended that caregivers have the opportunity to consent to participation in HRSN screening, documentation in the EMR, and data sharing with payers, or decline participation altogether. As one caregiver explained, “Because we have the option to answer or don't answer so it's not like we're forced, you know… I don't think it should be a requirement… I feel like that's getting too personal, you know” [Participant 2829]. The opportunity for caregivers to update or remove previously documented HRSNs in the EMR also enhanced comfort: “If there's a way to put [HRSN data] in and then if there's a way for the patient's family to take it out when they want to take it out or like have some control over that, maybe that's a better option” [Participant 3076]. A related strategy to enhance comfort that many caregivers endorsed was documenting in the EMR only that screening was completed and/or that resources were provided rather than specific responses or resources. Caregivers explained that this option provides more flexibility to choose when and with whom HRSNs are shared and discussed.

3.2.3. Training clinical staff

Caregivers recommended that clinical staff performing HRSN screening are trained in data privacy and compassionate care specific to HRSN data collection and documentation. Several caregivers described that training staff with access to their HRSN data to ensure they understand the sensitivity of this information would help them feel more comfortable sharing it. Similarly, many caregivers emphasized that if the person collecting their HRSN data demonstrates genuine concern about and empathy for their circumstances, this would provide reassurance that the health system is truly interested in their whole‐person health and taking their needs seriously. As one caregiver said, “It shouldn't be something that's just like thrown around and asked just to be something that's asked… you wouldn't want people to feel like, oh, they don't actually care” [Participant 7601]. Caregivers identified a range of preferences in terms of the clinical staff that would be best to receive training in patient‐centered HRSN data collection, including social workers, physicians, nurses, and administrative staff.

3.2.4. Situational awareness

The timing of HRSN data collection within the medical visit was another important factor that influenced caregiver comfort. Most caregivers preferred that social care be delayed until medical concerns are addressed. Caregivers shared two related reasons for this preference. First, caregivers described the difficulty of meaningfully engaging with HRSN screening or interventions while they are worried about their child's health; this theme was particularly prevalent among caregivers enrolled in the ED. One caregiver said, “Usually when you come in, it's right after an initial scare of something that you're worried about and that's the reason you're bringing your kid in… so I think the best time would be like when the nerves are calming down so when they're able to be like okay we're okay, we're being discharged…” [Participant 2536]. Similarly, whether the family has received difficult medical news should be considered in the timing of social care, if it should take place at all. As one caregiver explained,

If there's a serious medical diagnosis, nobody wants to talk about community resources unless they're about to be affected. You know, if someone just literally received like a life changing diagnosis, you wanna sort of calibrate or recalibrate whether or not that meeting even needs to take place… [Participant 7435]

Many caregivers also said that delaying social care until they have spoken with their physician would assuage concerns that HRSN interventions could detract from the already limited time they have with their provider to address medical complaints.

4. DISCUSSION

This qualitative study identified barriers and facilitators to caregiver comfort with HRSN data collection and documentation in the pediatric EMR, yielding several recommendations for improving social care practice to better align with caregiver preferences (Tables 2 and 3). In line with previous literature, caregivers identified privacy concerns and the unintended consequences of documentation, including undue involvement of child protective services and stigmatization by providers, as the primary drivers of discomfort.17, 18, 19 Caregivers also expressed discomfort with the possibility that HRSNs documented in their child's EMR may not be updated as their family's circumstances change and were concerned about the implications of this perceived permanency. Establishing procedures for updating documented HRSNs at frequent intervals in partnership with families would address caregiver concerns and support ongoing dialogue with the care team about families' well‐being (Table 2).

Caregivers worried that their children could be negatively impacted or stressed if they were to view documented HRSNs, either in the present or in the future. While numerous studies have demonstrated patients' concerns with HRSN documentation and related data sharing both within and outside of the health system, discomfort related to information access for the patients themselves highlights the unique considerations for implementing HRSN interventions in the pediatric setting.24, 29 This concern may be further exacerbated as a result of open notes requirements mandated by the 21st Century Cures Act of 2020, increasing data visibility by both pediatric patients and their proxies; this is particularly consequential in cases of custody dispute or intimate partner violence. ³⁰ A pragmatic approach to circumventing these concerns could entail documenting social care provided rather than HRSNs disclosed. Alternatively, providers could document in sections of the EMR that are not immediately visible to users, and utilize procedures for HRSN documentation that restrict visibility for pediatric patients and proxies (Table 2). Furthermore, these findings highlight considerations for screening caregivers of adolescent patients, as these patients are more likely to have access to their EMR.

Caregivers were concerned that healthcare providers would make assumptions about their medical complaints based on documented HRSNs. This sentiment aligns with the concept of anchoring bias, a type of cognitive bias in which physicians anchor their decision‐making on a single initial piece of information, resulting in misdiagnosis or delays in appropriate care.31, 32 While our finding represents a caregiver concern rather than a lived past experience, it is notable that the potential effects of anchoring bias as a result of HRSNs documented in the EMR have not yet been explored in the context of social care. Furthermore, while adjusting medical care in response to disclosed HRSNs is a highly valuable and established dimension of social care, these findings underscore the importance of prioritizing family autonomy and shared decision making to ensure that adjustments are supported by caregivers and not made based on assumed linkages between HRSNs and medical complaints. ³³

Caregivers were also concerned about insurance companies' access to HRSN data, confirming and expanding upon existing literature. Several studies have also found that caregivers are largely uncomfortable with the prospect of HRSN data sharing with payers.12, 22 Our findings expound on this concept, suggesting that fear of jeopardizing eligibility for future coverage and unexpected bills for receipt of social care services may be at the root of this concern. Furthermore, caregivers in our study shared that they would be less likely to disclose HRSNs if they knew that information might be shared with insurers. This underscores the importance of transparency with caregivers about whether data will be shared and to the extent that it is known, how it will be used (Table 2). Sources of caregiver fear should be considered in health system decisions about how best to comply with expanding payer and regulatory requirements around HRSN data sharing to maximally protect caregiver privacy as well as meet uncertainty about the implications of data sharing with transparency.

In a policy landscape that incentivizes social risk screening and documentation of HRSNs in the pediatric EMR, we aimed to elevate caregiver‐driven suggestions for mitigating barriers to comfort with HRSN data collection. Many caregivers emphasized the importance of clear communication during all phases of HRSN data collection and documentation to increase comfort, including transparency about why the information is collected, where it will be stored, and who will have access to it. Clear communication with caregivers about the process and goals of HRSN data collection also has the potential to address uncertainty among caregivers regarding whether the medical setting is appropriate for the delivery of social care. While only a minority of caregivers in our study expressed this uncertainty, it has been identified in previous research. ²⁴ Furthermore, this corroborates existing literature that found that the manner in which HRSN assessments are explained to families can significantly impact engagement.34, 35 These findings also suggest the importance of clearly describing social care procedures before any data is collected to ensure that caregivers have the information needed to both enhance comfort and make an informed decision about their participation (Table 3).

Caregivers emphasized that in addition to a clear understanding of HRSN data collection and documentation processes, opportunities to consent to each step of social care procedures would enhance comfort. For example, caregivers could be offered the opportunity to consent to HRSN screening separately from EMR documentation and data sharing with payers. Presenting caregivers with the option to complete HRSN screening independently from asking about their interest in receiving longitudinal HRSN support such as resource navigation at each visit may be another approach to enhancing caregiver autonomy (Table 3). Health systems could also record a caregiver's choice to decline participation or select “I prefer not to answer” on an HRSN survey as completion of HRSN data collection for payor purposes. These strategies would maximize caregiver choice in their engagement with HRSN data collection in line with our findings.

Appropriately preparing staff who will be introducing social care and collecting data was identified as a practice that may facilitate caregiver comfort. Caregivers communicated the value of personnel trained in “talking to people and understanding” both their social circumstances and the gravity of their disclosures in increasing comfort. This supports the integration of trauma‐informed communication practices into social care that acknowledge and honor the lived experiences that caregivers bring to the health system (Table 3). Given the intersection between experiences of HRSN and trauma, staff engaging families in social care as well as those with access to HRSN data should be prepared to preserve caregiver safety. Training staff who are collecting HRSN data in trauma‐informed care has demonstrated success in the context of social care integration, although more research is needed. ³⁶ Furthermore, pairing trauma‐informed care training with education on best practices for providing social care in response to documented HRSN minimizes the risk that caregivers experience unintended consequences of social care such as stigmatization without receiving meaningful support.

Caregivers suggested that the timing of HRSN data collection should vary depending on the medical care that is required and diagnoses received. Caregivers stressed that conducting HRSN screening before acute medical needs are addressed can result in overwhelm or a lack of engagement, even if assistance would otherwise be desired. These findings suggest that ideally, social care protocols should be designed with the flexibility to be responsive to the dynamics of each clinical encounter (Table 3). Alternatively, social care assessments could be universally shifted to the end of each visit to maximize the chances that caregivers are in the mindset to engage. Particularly in the ED and outpatient settings where visit times are relatively short, this raises questions about whether to pursue alternative social care practices that offer support at caregivers' preferred time outside of the medical visit. This is an area ripe for future study.

4.1. Limitations

Participants were recruited from within a single health system, potentially limiting generalizability. This effect was minimized by enrolling participants from settings that are diverse in terms of geography (rural vs. urban), acuity (ED vs. primary care), race, and ethnicity. Furthermore, the perspectives of caregivers who had the capacity to participate in a 30‐ to 50‐minute interview may differ from those who did not. This risk was mitigated by contacting prospective participants during their preferred time as reported on their enrollment survey and by continuously monitoring key participant demographics to achieve a representative interview sample. Due to staffing and funding constraints, interviews were conducted only in English and Spanish. Future research should explore additional multilingual perspectives on social care.

4.2. Implications for practice

Participants identified barriers and facilitators to comfort with HRSN data collection and documentation that should be considered in the design of clinically based HRSN interventions to ensure that these programs are equitable and family centered. As HRSN programming proliferates in pediatric settings, our findings underscore the need to maintain awareness of potential unintended consequences and avoidable discomfort for participants. Results from this study highlight specific caregiver‐driven recommendations that can be operationalized in HRSN data collection and documentation protocols to enhance caregiver comfort and engagement (Tables 2 and 3). Future research should focus on implementation and scaling of findings in the pediatric ED and primary care settings to advance equity in social care.

FUNDING INFORMATION

This research was funded by the William T. Grant Foundation and the Emergency Medicine Foundation. The sponsors had no role in study conceptualization, design, data collection, analysis, and interpretation of data, preparation of the manuscript, or in the decision to submit the article for publication.

Brown R, Barouk N, McPeak K, Fein J, Cullen D. Barriers and facilitators to caregiver comfort with health‐related social needs data collection in the pediatric clinical setting. Health Serv Res. 2025;60(Suppl. 3):e14425. doi: 10.1111/1475-6773.14425