Social Needs Screening and Intervention in Pediatric Primary Care: Impact on Families’ Experience of Care

Abstract

Introduction/Objectives:

Social determinants of health (SDoH) screening and intervention in pediatric primary care depends upon caregiver disclosure of adverse household or social conditions and thus may be influenced by perceived bias or stigma. This paper examines to what extent parents’ experience of their child’s medical home is associated with their perceptions of a practice-based social needs intervention.

Methods:

We conducted a cohort study of data reported by 73 parents of children obtaining care in a medical home with an embedded SDoH navigation program. Using survey data collected in October 2021 and October 2022, we calculated descriptive statistics and non-parametric bivariate analyses of the association between engagement with the SDoH navigation program and parent-reported social needs, stress, and perception of care quality as measured by the Person-Centered Primary Care Measure (PCPCM).

Results:

Initial ratings of care quality were high (mean baseline PCPCM score = 3.63) and remained high on second interview (mean change in PCPCM score = −0.04, 95%CI −0.16, 0.09, P = .58) despite significant reductions in parents’ ratings of access to care over time. Parents reported substantial stress, unmet social needs, and unmet healthcare needs, with 41 families (56%) ever using the practice-based SDoH program, including 16 (22%) who were new users in 2022. There was no association observed between PCPCM score and parent stress, unmet social needs, or use of SDoH services.

Conclusions:

Parents’ perceptions of care delivered in their child’s medical home appears to be stable on repeat measurement, and independent of family context or interactions with social needs navigation services offered in the practice.

Keywords

social determinants of health pediatrics primary care underserved populations program evaluation

Introduction

Multiple professional organizations, including the American Academy of Pediatrics and the American Academy of Family Physicians, recommend that primary care clinicians incorporate social determinants of health (SDoH) screening and intervention into routine encounters.^1,2 However, concerns have been raised regarding the ethics of SDoH screening without processes in place to respond to needs,^3
-7 discomfort by clinicians asked to do this work, and apprehension about the potential impact on relationships among patients, caregivers, and clinical teams.⁸

In general, SDoH screening in pediatric primary care depends upon caregiver disclosure of adverse household or social conditions. Disclosure may be influenced by bias or stigma—among parents or the healthcare team. Parents may fear that disclosure of unmet household needs will be interpreted as admitting their inability to care for their children and thus open the door to social services involvement, supervision, or loss of custodial rights.^9,10 They may fear disappointing their clinician, particularly if they are again in need of resources that have been provided in the past.^10,11 Healthcare team members may assume that they “know” who has unmet needs, basing judgement on appearances, demographics, or past interactions.^9,12 Indeed, qualitative studies consistently indicate that stigma is a significant barrier to the use of screening and referral services,^10,13
-15 while trust is an important facilitator of the social needs screening process.^9,16 Responses to positive screens may include tailoring medical care plans,⁵ providing information such as a list of community resources,¹⁷ placing formal referrals for enrollment in needed resources,^18,19 or directly distributing tangible goods. Practice-based social needs interventions may facilitate these activities but the factors influencing families’ interest and ongoing engagement remain unclear.

Therefore, we hypothesized that families with more positive perceptions of the practice (eg, those with stronger relationships with clinicians, sense that the practice understands and considers their family and community context in organizing their care, and stands up for them) may be more likely to disclose an unmet need, more open to support, and more likely to engage with social needs intervention supports. The purpose of this paper is to explore to what extent parents’ experience of their child’s medical home is associated with their perceptions of a practice-based social needs intervention.

Methods

Data were obtained from the 2021 and 2022 Local Inventory of Needs and Knowledge (LINK) Survey, an intermittent telephone survey representative of patients and families presenting for care at the UH Rainbow Center for Women and Children (“the Center”) in Cleveland Ohio. The Center aims to provide comprehensive medical (pediatric primary care and women’s health care), behavioral health, ancillary health care (dental, optometry, laboratory, and pharmacy) and social (social needs navigation and medical-legal partnership) services under 1 roof to an urban population that is low income and predominantly English-speaking (fewer than 5% encounters in languages other than English). The purpose of the LINK Survey is to generate practice-level snapshots of patient-reported needs and experiences to inform implementation and evaluation of Center programing. Figure 1 shows a conceptual model depicting LINK Survey content areas and their proposed relationships. All LINK Survey protocols are approved by the University Hospitals Cleveland Medical Center Institutional Review Board.

Figure 1.

LINK survey content, depicted as a conceptual model of hypothesized influences on use of social needs navigation and experience of care. Household-level measures in the LINK Survey shown in box (a) include: household size (# of adults and children residing together), highest level of educational attainment (less than high school, high school or GED, associates’ degree, technical degree, bachelor’s degree, master’s degree, and doctorate), with measures of job loss, housing needs, financial needs, benefits use, and food needs described in the main text. Primary measures of interest for these analyses in the LINK Survey shown in gray bubbles in box (b) include: parent stress as measured by Cohen’s Perceived Stress Scale—Short Form (PSS4), experience of care in the practice as measured by the Person Centered Primary Care Measure (PCPCM) and use of social needs navigation services, whose measure construction is described in the main text. Bold arrows depict primary hypotheses to be tested in these analyses. Child-level measures in the LINK Survey shown in box (c) include: child demographics including age, sex, race/ethnicity, top health concerns; child healthcare needs for visits, prescriptions, therapies, and insurance coverage; child healthcare status. Child healthcare visits, shown in italicized gray text are included in the conceptual map but not measured in the LINK Survey.

LINK Survey recruitment occurs annually in October and November, with survey invitations mailed to a stratified random sample of patients who completed encounters in the previous week, followed by a phone call from study staff. At completion of the interview, study staff ask for permission to recontact the interviewee during the following year’s data collection period. We included the survey responses for all 73 interviewees recruited from the Center’s pediatric practice (hereafter, “parents”) who participated in both 2021 and 2022. Interviewees had to be age 18 years or older, comfortable conversing in English, and the legal guardian of the index child for whom the visit was scheduled.

Demographic variables: Child age and child sex were obtained from the electronic medical record as part of survey sampling and were confirmed with the participating parent. Parents were asked to self-report their own age, gender, race, ethnicity, preferred language, highest level of education, and insurer. Overall health status for both parent and child was rated as “excellent, very good, good, fair, or poor,” following the single item from the National Survey of Children’s Health.²⁰

Social Needs: Parents were asked to rate statements using a Likert scale of “1—not at all true” to “5—completely true,” considering their family’s experiences in the preceding 12 months. The indicator variable “unmet housing needs” (1—yes and 0—no) was constructed from statements regarding the condition of their home, presence of mold, pests, or other incursions, and confidence in their ability to remain in the current home. The variable “unmet financial needs” (1—yes and 0—no) was constructed from statements regarding ability to pay utility bills, sufficient cash to meet household expenses, and ability to access and make use of relevant benefits or entitlements, such as the Special Supplemental Nutrition Program for Women Infants and Children (WIC), Supplemental Nutrition Assistance Program (SNAP), and/or Temporary Assistance for Needy Families (TANF). Enrollment in financial benefits was assessed via a 4 question sequence used in the National Survey of Children’s Health.²⁰ Food insecurity was defined as positive response to the Hunger Vital Sign.²¹ Job loss was assessed using the single item “At any point in the last 12 months, have you or anyone age 18 years or older living in your household lost their job, business, or been furloughed?”

Healthcare needs: The variable “unmet healthcare needs” was constructed as follows: The level “1—yes” reflected any response less than “5—completely true” to 1 or more of the statements regarding ability to obtain all needed health care visits, medical equipment or supplies, medications, dental visits, behavioral health visits, and insurance coverage. The level “0—no” reflected a response of “5—completely true” to all 6 statements. See Supplemental Appendix I for details regarding indicator variables.

Parent stress was assessed using the Cohen’s Perceived Stress Scale—Short Form (PSS4).²² Total scores were analyzed both as a continuous measure (0-16, with higher scores indicate greater stress) and as a categorical variable: “highly stressed” versus “not highly stressed” with a cut point of 6, selected based on the most conservative estimate of population norms for the PSS4 available in the literature.^23
-25

Experience of care was assessed using the Person Centered Primary Care Measure (PCPCM),²⁶ a parsimonious measure of 11 aspects of high quality primary care, based on what patients, clinicians, and payers say matters most in primary care. The PCPCM was previously validated for use in this setting,²⁷ in addition to cross-cultural validation in 35 OECD countries.²⁸

Exposure to Center offerings was assessed by asking parents to indicate each program or service listed by the interviewer they had used in the prior 12 months, were aware of but hadn’t used, or were not aware of. “Never users” indicated in both the 2021 and 2022 surveys either that they were unaware of the program or service or were aware of the program but had not used their services, while “ever users” indicated in either or both 2021 and 2022 that they had used the program in the prior 12 months. “New users” were those who reported using the program in 2022 but not 2021, while “established users” were those who at least reported using the program in 2021. See Supplemental Appendix II for details.

Bivariate analyses using the Kruskal-Wallis Rank Sum Test assessed associations among PCPCM scores and baseline (2021) demographics, unmet social needs, and awareness and use of the social needs navigation program. To characterize change in social and healthcare needs between survey years, we constructed multi-categorical variables for each topic area as follows: “New” reflects a need reported in 2022 that was not indicated in 2021, “Resolved” reflects a need reported in 2021 that was not indicated in 2022, while “Persistent” reflects report of need in both years, and “None” reflects absence of need in both years. To evaluate change in continuous measures (PSS4 and PCPCM) between survey years, 2-sided paired t-tests were calculated. P-values <.05 were considered statistically significant. A post-hoc calculation using G*Power 3.1.9.7 software found statistical power sufficient to achieve 80% power with alpha .05 to detect a small effect size²⁹ of 0.35, and 99% power to detect a medium effect size²⁹ of 0.5 in the difference between 2 dependent means. Analyses were completed using R software version 4.0.3 and R Studio version 1.4.1103 (R Foundation for Statistical Computing).

Results

Among 151 parents who completed the LINK Survey in 2021 and agreed to be recontacted, 73 (48%) completed a second interview in 2022 (n = 37 [51%] with referent child aged 0-5 years). Of these, 70 (96%) identified as Black or African American, 2 (3%) identified as Hispanic or Latinx, and 3 (4%) reported speaking a primary language other than English. Nearly half (n = 31, 43%) had completed at least some post-secondary education.

At first interview (Fall 2021), only 36 index children (49%) were described by their parent as being in excellent overall health, and 19 (26%) were reported to have 1 or more unmet needs for healthcare visits, dental care, therapies, prescriptions, supplies, or health insurance. Substantial social needs were reported, with 31 children (43%) living in households with 1 or more problems related to the condition or stability of their housing, 26 (36%) with food insecurity, and 40 (55%) with 1 or more financial concerns. Parents reported making use of median 2 (IQR 1-3) of up to 4 financial benefits (WIC, SNAP, TANF, or free/reduced cost meals through school) and 20 (28%) reported job loss in the prior year. Parents reported a median stress (PSS4) score of 4 (IQR 2-8), with 26 (38%) scoring as “highly stressed.” There was no statistical association between stress score and unmet social needs. Compared to other 2021 interviewees, those who went on to complete the second interview more often reported food insecurity (36% vs 22%, P = .09), but there were no other differences in demographics or social needs where P < .1.

As of Fall 2021, 25 (35%) parents had worked with the Center’s social needs navigation program; an additional 18 (25%) were aware of the program (but hadn’t used it), while the remaining 28 (39%) hadn’t heard of the program. Social needs program users least often reported unmet child healthcare needs (12%, vs 25% of those who were unaware of the program, vs 44% of those who were aware but hadn’t used the program, P = .06).

Overall, parents rated their experience of person-centered primary care highly, with an average PCPCM score of 3.65 in 2021, though PCPCM scores were lower among those reporting unmet healthcare needs as compared to those without (3.46 vs 3.72, P = .02). Parents least often endorsed the items for shared experience (“my child’s doctor and I have been through a lot together”) and community context (“the care [child’s name] gets takes into account knowledge of our community”). There were no differences in PCPCM score at first interview based on awareness of the social needs navigation team (3.65 vs 3.57 vs 3.72, P = .51 for those who were unaware vs program nonusers vs program users, respectively). There were also no differences in PCPCM score according to reported unmet social needs (see Table 1).

Table 1.

Baseline Mean (SD) Person-Centered Primary Care Measure (PCPCM) Scores According to Presence or Absence of Unmet Needs.

Need area	No unmet needs	Any unmet need	P-value^a
Housing	3.69 (0.43)	3.60 (0.42)	.36
Finances	3.75 (0.33)	3.57 (0.48)	.07
Food	3.65 (0.46)	3.66 (0.36)	.97
Healthcare	3.72 (0.32)	3.46 (0.59)	.02

Boldface indicates statistical significance (P < .05).

Kruskal-Wallis Rank Sum Test.

By the second interview (Fall 2022), 16 parents had become “new users” of social needs navigation services (22% of overall cohort, 33% of those without prior experience with the program) while 32 remained “never users.” Compared to those who ever used the social needs program, “never users” less often had an index child age 0 to 5 years (25% vs 71%, P < .001) and more often completed at least some college (59% vs 30%, P = .024). There were no significant differences between ever users and never users in their baseline (2021) unmet housing, financial, or food needs, nor in median [IQR] stress (3.5 [2, 7.25] vs 5 [2, 8], P = .79), though never users reported fewer benefit sources at baseline compared to ever users (median 2 [IQR = 1, 3] vs median 3 [IQR = 2, 4], P = .038). Parents reported both persistence of and churn in unmet needs, with as many reporting new needs as those indicating resolution of previously identified concerns (see Figure 2).

Figure 2.

Transitions in parent-reported unmet needs 2021 (left) to 2022 (right).

A greater proportion of never users were “highly stressed” in 2022 as compared to 2021 (55% vs 38%), while the proportion who were highly stressed was stable in the ever user group (35% vs 38%), though this finding was not statistically significant. Overall, PSS4 scores decreased by median 1 point (IQR = −3, 2) among those who ever used the social needs navigation program, compared to an increase of PSS4 score by median 1 point (IQR = −1, 3.25) among never users, P = .05.

No substantial change between survey years was observed in overall PCPCM score (see Table 2), though there were notable within-person reductions in ratings of access in 2022 vs 2021 (P = .004).

Table 2.

Modified Person-Centered Primary Care Measure (PCPCM) Items and Responses, Baseline and Change Over Time.

Item stem	Domain	Baseline	Within-person change 2022 vs. 2021
Item stem	Domain	Mean (SD)	Mean (SD)	95% CI	P-value^a
Overall PCPCM score		3.65 (0.42)	−0.03 (0.53)	[−0.16, 0.09]	.58
This practice makes it easy for us to get care	Accessibility	3.93 (0.30)	−0.17 (0.47)	[−0.28, −0.06]	<.01
This practice is able to provide most of [child’s name]’s care	Comprehensiveness	3.93 (0.31)	−0.03 (0.34)	[−0.11, 0.05]	.48
In caring for [child’s name], my child’s doctor considers all of the factors that affect their health	Care integration	3.88 (0.50)	−0.03 (0.65)	[−0.18, 0.12]	.72
This practice coordinates the care [child’s name] gets from multiple places	Care coordination	3.82 (0.61)	0.02 (0.69)	[−0.17,0.20]	.85
This doctor or practice knows [child’s name] as a person	Relationship	3.48 (0.97)	−0.04 (1.09)	[−0.31, 0.22]	.74
[Child’s name]’s doctor and I have been through a lot together	Shared experiences	2.75 (1.33)	0.00 (1.33)	[−0.32, 0.33]	1.0
My child’s doctor or practice stands up for my family	Advocacy	3.56 (0.89)	0.05 (0.79)	[−0.16, 0.26]	.62
The care [child’s name] gets takes into account knowledge of our family	Family context	3.83 (0.56)	−0.15 (0.80)	[−0.35, 0.04]	.11
The care [child’s name] gets takes into account knowledge of our community	Community context	3.31 (1.10)	0.23 (1.05)	[−0.04, 0.50]	.09
Over time, this practice helps [child’s name] and me to meet our goals	Goal oriented	3.83 (0.56)	−0.16 (0.93)	[−0.38, 0.06]	.16
Over time, this practice helps [child’s name] to stay healthy	Health promotion	3.90 (0.38)	−0.11 (0.62)	[−0.26, 0.03]	.13

Boldface indicates statistical significance (P < .05).

Paired t-test.

Discussion

A small cohort of families from a pediatric community practice rated the quality of person-centered primary care as high, and this rating remained high 12 months later. Contrary to our hypothesis, there was no association between parents’ use of the social needs navigation program and their ratings of care, though we did observe demographic differences among those who did versus did not use the program, as well as differences in the level of stress reported by program users at second interview.

The high overall PCPCM (3.65 [SD = 0.42]) scores are notable. For comparison, the PCPCM overall mean score across 35 Organization for Economic Co-operation and Development (OECD) Countries was found to be 2.74 (SD = 0.19), with an average PCPCM score across the United States of 2.99 (SD = 0.77).²⁸ A recent study found that higher PCPCM scores were associated with better patient health status, higher educational attainment and greater length of relationship with the respondent’s provider.³⁰ By contrast, nearly all participants in the present study rely on public health insurance, less often completed post-secondary education, and were less likely to characterize their child as being in excellent overall health.

Despite similar unmet needs at initial interview, demographic differences were observed between those who reported ever using the social needs navigation program and those who never made use of that resource. Compared to “ever users,” “never users” had older children and higher levels of education. It is possible that lack of program uptake by “never users” relate to differences in social capital and access by other means to the resources needed to close gaps in care. These findings are consistent with a recent study of more than 30 000 SDoH screens completed by members of a Medicaid Accountable Care Organization; patients from historically marginalized communities (those of minoritized race, low English proficiency, and/or residing in communities with lower socioeconomic position) more often requested information about resources addressing housing, education, food, utilities and other social needs.³¹

Those who used the social needs program reported less stress on second interview than did those who had not used the program. While this finding did not achieve statistical significance, it is plausible that a social needs navigation program may impact families’ overall perceived stress more than aspects of their clinical experience. Previous interviews with program users indicate that the initiation of navigation supports and the demonstration of empathic caring by social needs program staff are as important as the content of their interactions. This finding has been replicated in multiple other qualitative studies of social care in healthcare settings.^9,13,32
-34 Future work is needed to test this hypothesis in a sufficiently powered sample, as well as to unpack the mechanisms by which parent interactions with healthcare team members can impact their overall stress.

We speculate that the primary positive effect of a social needs navigation program is on parents’ perception of being supported socially, rather than on the program’s effectiveness at “solving” specific needs. Indeed, a substantial portion of our cohort reported chronicity of many social needs between survey years, with no association between use of the program and resolution of (or incidence of new) need. While less is known about how social risks evolve over the life course, a growing body of literature does suggest persistent gaps in accessing highly administrative safety net programs such as SNAP³⁵ and Medicaid³⁶ and a chronic recurrence of specific social needs, such as homelessness.

These analyses have a number of limitations. This small sample was powered to detect small to medium effect sizes, and thus may miss associations with very small effects. Given the complexity of relationships between social needs, caregiver stress, healthcare utilization, and experiences of care, it is possible that different conclusions would be drawn from similar analyses with a more robust sample. These analyses relied entirely on parents’ self-reporting of unmet needs as they perceived them at the time of the interview. Given pandemic-related reductions in access to care (especially dental services) in 2020 and early 2021, the finding that relatively few children had unmet needs for care in 2021 but markedly more had unmet healthcare needs in 2022 was unexpected. It is possible that other considerations, such as risk of COVID exposure by un(der)vaccinated very young children, altered parents’ perceptions of needs for visits or other healthcare resources. Whether parents were aware of or had used the social needs navigation program at the Center was asked as part of a listing of wrap-around and ancillary programs and services, rather than directly as part of parents’ feedback regarding their healthcare encounter. It is therefore not entirely clear whether parents view the social needs navigation program offered by the center as truly integrated into their child’s medical home, or whether they instead view the program as a co-located service, akin to the WIC office or outpatient pharmacy. These differing perspectives on the role of the navigation program relative to the practice may account for lack of association observed between use of the program and experience of care.

Conclusion

This study in a practice serving low SES families shows that high and stable parental ratings of care delivered in their child’s medical home appear to be independent of interactions with social needs navigation services offered in the practice. These survey findings generate several important hypotheses for further investigation regarding the role of social needs navigation services within a pediatric practice. While these data do not provide evidence of an association between use of the social needs navigation program and experience of primary care, the stress findings are provocative and are worthy of further investigation. Finally, these analyses represent a first step toward understanding how scores on the PCPCM, which is based on aspects of care that patients and primary care clinicians say are most important, may or may not shift over time among a defined cohort of parents. At least in this context, overall PCPCM appears to be stable despite measurable shifts in practice factors, such as access, and independent of family context or experiences with affiliated services.

Supplemental Material

sj-docx-1-jpc-10.1177_21501319241255917 – Supplemental material for Social Needs Screening and Intervention in Pediatric Primary Care: Impact on Families’ Experience of Care

Supplemental material, sj-docx-1-jpc-10.1177_21501319241255917 for Social Needs Screening and Intervention in Pediatric Primary Care: Impact on Families’ Experience of Care by Sarah D. Ronis, Marie Masotya, Genevieve Birkby and Kurt C. Stange in Journal of Primary Care & Community Health

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by grants from the Key Bank Foundation and the Rainbow Babies & Children’s Hospital Foundation. Funders were not involved in study design, collection, analysis, interpretation of data, or writing of this report.

ORCID iD

Sarah D. Ronis

Supplemental Material

Supplemental material for this article is available online.

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