Elevating Parents’ Voices in Designing and Implementing Pediatric Inpatient Social Care Systems

Adverse social determinants of health, many rooted in structural racism, are increasingly recognized to be major drivers of health inequities in the United States.^1–3  In 2016, the American Academy of Pediatrics highlighted the responsibility pediatricians have in addressing unmet social needs to optimize child health, in its policy statement on Child Poverty, recommending screening for social needs at every child health visit.⁴  Much work has been done in the ambulatory sector to turn that recommendation into a reality, including the creation of standardized social needs screening tools and toolkits to assist in implementation.^5–10  Social needs screening has since become routine in many outpatient settings; however, less is known about screening during hospitalizations.^11–14  There is now growing momentum for implementing inpatient social needs screening, recognizing the hospital setting as a unique and underutilized opportunity to reach additional high-risk patients who may otherwise slip through the cracks of the health care system. This will likely only increase with the recent recommendations for inpatient social needs screening made by standards-setting organizations, such as the National Committee for Quality Assurance, Centers for Medicare & Medicaid Services, and the Joint Commission.¹⁵  Given the relative paucity of data on inpatient screening and the lack of inpatient-specific guidance, hospitals’ implementation efforts are likely to be highly variable, and it is unclear how inpatient screening will be received by parents of hospitalized children.

In this month’s Hospital Pediatrics, Luke et al shed light on this important topic, reporting parent perspectives after participating in an inpatient social needs screening and referral system implemented at their tertiary children’s hospital. In their system, parents completed an adapted Health Leads screener, and those who screened positive were offered a NowPow-generated paper packet on local resources and/or a social work (SW) consult. Families receiving outpatient care within the hospital’s network were also offered a community health worker referral for more longitudinal support and follow-up. The authors included Spanish-speaking parents, allowing the perspectives of parents with preferred languages other than English to be heard. Although the study was qualitative in nature, not designed to be generalizable, and limited by conduct at a single tertiary center, it provides great insights into the benefits, challenges, and complexities of pediatric inpatient social care programs.

Hospital Pediatrics readers may be heartened to learn that all parents in the study were accepting of inpatient social needs screening and recognized the importance of screening in this setting. When discussing the potential for inpatient screening, concerns are often raised that asking questions about social needs in the hospital environment may make parents uncomfortable, given the sensitive nature of the questions, while lacking the closer, long-term relationships that are more often built with their pediatrician, or that social questions will be perceived as irrelevant when juxtaposed with the acuity of the medical problem that brought the family to the hospital. Luke et al’s study helps to assuage these concerns, contributing to a growing body of literature that suggests families value screening at a variety of touchpoints to reach the most people in need, and particularly value inpatient screening because social needs may become even more challenging in the face of an acute medical problem.^16–18 

Despite having a commendable multipronged intervention to address positive screens (resource packet and/or SW consult, potential community health worker referral), with most parents expressing that the intervention was helpful, parents often reported that their social need was not resolved by the support provided. Hospitals with less resource availability than tertiary centers may face even more limited options to address identified needs. Indeed, the resolution of social needs may require resources and services that are beyond the scope of hospital-based care and may take months to years to resolve. It has been postulated that screening without adequately addressing identified social needs can have unintended consequences, such as unfulfilled family expectations that may erode trust in the health care system and worsen the patient-doctor relationship.¹⁹  On the flip side, through qualitative studies, investigators have demonstrated that there is value in screening apart from any associated referral/resolution pathways, including the adjustment of medical care to take into account a patient’s social context (eg, to provide an alternative medication that does not require refrigeration if a family lacks access to a refrigerator), and communication between clinicians and patients regarding social context helping to validate patients’ lived experiences, ultimately strengthening relationships.^17,20  It is encouraging to see that Luke et al’s findings provide some support for the latter argument, with parents reporting benefits to screening itself (eg, having a more comprehensive understanding of families’ social situations may help medical providers identify modifiable drivers of illness). Additional research will be needed to understand whether screening leads to greater epistemic trust for parents with the inpatient team and the hospital at large. Likely, this will hinge on how empathetically the screening and ensuing follow-up steps are felt to have happened by parents and patients.

Despite parents’ recognition of the benefits of screening alone, as more hospitals look to implement social needs screening and referral programs, we must strive to develop interventions that address identified needs and avoid unintended harms as best we can within our own institutional contexts. This will no doubt require a tailored approach, with interventions leveraging contextual facilitators and available support staff while avoiding barriers within each hospital. It will require considerable time, effort, and dedication from multidisciplinary clinicians and leaders within each hospital system. Although fast-approaching Centers for Medicare & Medicaid Services mandates and waivers may be incentivizing hospitals to quickly develop inpatient social needs screening processes, we implore clinicians and hospital leaders to ensure adequate time is taken for the engagement of parents, key health care staff, and community-based organization (CBO) staff that may receive referrals during this development phase. Such preparation will be vital for the creation of protocols that optimize the likelihood of successful implementation while prioritizing a family-centered approach that maximizes support for socially vulnerable families who screen positively. We can take an example from the ambulatory setting, in which purposeful engagement of stakeholders, including parents and community organizations, has led to the creation of social care programs, such as WE CARE and Health Leads Help Desk, that have increased families’ receipt of community resources.^21–23  Lopez et al recently reported an inpatient adaptation of WE CARE, WE CARE Houston, developed in part through the engagement of local caregivers and tailoring of resource handouts to their community.¹⁴  If we do not take such careful considerations in our future inpatient program development efforts, and too rapidly implement without adequate focus on what parents desire, our well-intended efforts run a greater risk of causing harm to families rather than benefit. We also implore policymakers to focus on the other side of the screen and to develop policies that will not just incentivize screening but will also support hospitals in implementing effective social care interventions to address identified needs.

When considering potential interventions in response to positive screens, Luke et al’s parent participants expressed a desire for more longitudinal support from inpatient SW teams after discharge. Although this is understandably desirable and hopefully feasible within some hospital systems, acute care hospitals are not inherently structured to provide longitudinal care. Despite our best intentions, the provision of longer-term support and follow-up may be unachievable in some hospital systems, especially those with relatively limited resources and personnel, such as community hospitals. However, if we resolve to keep the parent voice at the center of our intervention development, we can find creative ways to overcome barriers and turn roadblocks into positives. Inpatient teams can take this opportunity to strengthen methods of communication with PCPs who have longer-term relationships with patients, passing the baton to follow-up on resource referrals made and potential resolution of needs. Hospital systems can take the initiative to create new partnerships or strengthen existing partnerships with CBOs that excel in connecting families, often with staff from the patients’ own community engendering trust, with social resources and may provide a more longitudinal experience. Although the inpatient setting may represent an important piece of the puzzle when combating adverse social determinants of health, ultimately, the long-term solution will be in the community to which the patient is discharged and lives his/her life. Overall, we need a robust safety net for families and more programs that invest in our neighborhoods and provide consistent investment (beyond transient individual grant funding) in our CBOs.

The widespread and successful implementation of pediatric inpatient social needs screening and referral systems will be a monumental task, requiring the engagement of patients/parents and action from our multidisciplinary clinicians on the ground of our inpatient units and all the way up to our policymakers and governing bodies. To optimize the likelihood of successful implementation and to maximize downstream positive effects for patients, best practice guidelines and inpatient-specific toolkits will need to be created and informed by clinical, parent, and CBO stakeholders, to assist hospitals as they develop, implement, and/or adapt and evolve their social needs screening and referral programs. Until then, we task inpatient teams to share and disseminate their programmatic structures, evaluations, and parent-reported experiences through publication, listserv discussions, and symposia, to guide other inpatient systems looking to initiate or improve their own social needs screening and referral processes. Luke et al have set a great example with their parental reflections in this month’s Hospital Pediatrics and have reminded us that it is vital to center our patient/parent voices in this work; they are truly our north star as we embark on this inpatient social needs screening journey. Together, by listening to the wisdom of our patients and their parents, we can make the inpatient unit a key part of the broader solution to address health-related social needs, improve child health, and ultimately reduce disparities to further advance child health equity.