It’s About Trust: Low-Income Parents’ Perspectives on How Pediatricians Can Screen for Social Determinants of Health
June 24, 2019
Health care providers and payers are increasingly taking responsibility for health outcomes and population health through a variety of approaches, including screening for social determinants of health. Just as pediatricians need time and training to integrate these screenings into their practices, parents may not necessarily expect to discuss social needs with pediatricians when they take their children to them for care.
Attempts to integrate social determinants of health screenings into pediatric primary care are more likely to succeed if they are grounded in an understanding of parents’ receptivity to discussing social needs and responsive to their concerns about doing so. Yet little research has asked parents, particularly low-income parents, for their perspectives about social determinants of health and how screenings can be implemented successfully. To help fill this gap, Public Agenda, with support from United Hospital Fund, conducted qualitative research with low-income parents in New York City in an effort to obtain answers to three main questions:
- What are these parents’ perspectives on social determinants of health?
- How receptive are they to discussing social needs with pediatricians?
- What are their ideas for making social determinants of health screenings work well?
In eight focus groups, Public Agenda engaged low-income parents in discussion of topics including:
- What do these parents worry about or find challenging when it comes to their children’s health and well-being?
- How do their worries and challenges relate to the social determinants of health for which some pediatricians are screening?
- Where can parents go for help in the face of those worries and challenges?
- Do parents view their children’s pediatricians as good sources of help with or information about social needs? Why or why not?
- How do parents think pediatricians can successfully integrate screenings for and conversations about social determinants of health into pediatric primary care?
This report summarizes findings from eight focus groups with low-income parents of children ages five years and younger in New York City, conducted in English and Spanish by Public Agenda in July and August 2018.
Before designing the focus group moderator guide, Public Agenda staff reviewed previous research about social determinants of health in pediatric care, conducted eight interviews with pediatric primary care practitioners, and consulted staff at the community organizations where four of the focus groups were conducted.
To refine the research goals, Public Agenda staff held meetings with UHF staff, who then reviewed drafts of the focus group moderator guide. Public Agenda staff also held meetings with staff of the community organizations at which we planned to conduct the focus groups, to improve our understanding of the populations they served. Public Agenda staff created one moderator guide for use in both sets of focus groups, with flexibility to accommodate differences in emphasis and responses between them. The moderator guide was shared with the community organizations’ staffs if they requested it. During the focus groups, the moderators did not use the terms “social determinants of health” or “social needs.” Instead, they used neutral terms like “issues” or “factors.”
For four of the focus groups, participants were recruited by a professional
market research facility. Public Agenda staff moderated the groups at that facility. For the other four, participants were recruited by community organizations that are part of UHF’s Partnerships for Early Childhood Development (PECD) initiative. Public Agenda staff moderated the groups onsite at those organizations. The difference in recruitment ensured the participants would include parents who were not necessarily clients of community organizations connected with the PECD initiative. Public Agenda’s research
team collaboratively developed a coding scheme and coded the focus group transcripts using Dedoose qualitative analysis software. Since analysis of the transcripts indicated that parents’ perspectives, experiences and ideas across the two sets of focus groups were largely similar, data from all eight groups are discussed together in this report.
Focus Groups at the Market Research Facility:
In total, 40 parents participated in the focus groups at the market research facility, which was in Manhattan. All participants were low-income parents of children ages five years and younger who had experience taking their children to pediatricians.10 Participants were recruited to Public Agenda’s specifications so that all were living in households at or below 250 percent of the federal
poverty level. They included residents of all five boroughs of New York City and reflected a diversity of low-income parents in terms of race and ethnicity, age, educational attainment, employment status and frequency with which they took their children to pediatricians. Four of the participants across these groups were fathers, and the rest were mothers. Grandparents were not included.
Potential participants were excluded if they worked in health care, health insurance, the pharmaceutical industry or health advocacy or if they had participated in a focus group within the previous six months.
The focus groups at the market research facility were conducted in English and lasted two hours. All participants were compensated for their time and provided with food. These focus groups were video recorded and professionally transcribed.
Focus Groups at Community Organizations:
Public Agenda staff conducted four focus groups onsite at Children’s Aid in the Bronx, the Northern Manhattan Perinatal Partnership in Harlem, and Public Health Solutions in Queens, to which Public Agenda was connected by UHF. The community organizations recruited the participants, provided space and were compensated directly by UHF for doing so.
In total, 48 parents participated in the focus groups at the community organizations. All participants in these groups were parents of children ages five years and younger and clients of one or another of the community organizations and had experience taking their children to pediatricians. Three of the participants across the groups were fathers, and the rest were mothers. Grandparents were not included.
The focus groups lasted two hours. The participants were compensated for their time. Food and child care were provided, and some parents kept their children with them during the groups. The focus groups were audio recorded and professionally transcribed.
Of the four groups conducted at community organizations, two were conducted at Public Health Solutions in Spanish by Spanish-speaking Public Agenda staff. One was conducted in English at Children’s Aid and one at the Northern Manhattan Perinatal Partnership. Transcripts of the groups in Spanish were professionally translated into English.
More information about this study can be obtained at www.publicagenda.org/pages/
determinants-of-health or by emailing firstname.lastname@example.org.
FINDING 1: WHAT SOCIAL STRESSORS CONCERNED THESE PARENTS?
Parents in the focus groups cited a broad range of social stressors that affected their children’s health and well-being, including some that screening tools for social determinants of health may not currently include.
Parents in the focus groups were first asked what they worry about or find most challenging when it comes to their children’s health and well-being. The groups began this way to ground the subsequent conversation in the parents’ own concerns and to find out how these concerns compared to the social determinants of health for which some pediatricians are screening.
In response, parents in the groups raised many factors they believe affected their children currently and which, they worried, might affect them in the future. Parents seemed acutely aware of the impact of these stressors on their children and often described first-hand experiences with them in their own lives or the lives of friends and family.
FINDING 2. WHAT ROLES DID THESE PARENTS THINK PEDIATRICIANS COULD PLAY IN ADDRESSING SOCIAL NEEDS?
Parents who had sought help from community organizations and other social service providers valued the support they received.
Some of the parents in the focus groups—including both those in the groups conducted onsite at community organizations and those in the groups conducted at the focus group facility—reported turning to community organizations and other social service providers for help with the issues that worried them or that they found challenging. The parents who had sought such help generally valued it.
FINDING 3. WHY DID PARENTS THINK DISCUSSING THE MORE SENSITIVE SOCIAL NEEDS WITH PEDIATRICIANS WOULD BE DIFFICULT?
Parents’ concerns about discussing sensitive social needs with pediatricians included worries about being judged and discriminated against, fear of intervention by a child welfare agency, lack of time during appointments and frustration at the prospect of disclosing sensitive information without getting help.
For most parents in these groups, the idea of discussing social stressors with pediatricians was unfamiliar. They generally understood why pediatricians would be asking about these stressors, but many emphasized the need for them to approach the topics with sensitivity. Furthermore, the prospect of discussing some social stressors provoked wariness among most parents.
The focus group moderators sought to understand parents’ concerns so pediatricians could understand and address them. The final section of this report details parents’ ideas for how pediatricians can approach these discussions in ways that are productive and welcoming for parents and families.
FINDING 4. HOW DID THESE PARENTS THINK PEDIATRICIANS SHOULD DISCUSS SOCIAL DETERMINANTS OF HEALTH WITH THEM?
Parents’ recommendations for pediatricians about discussing social determinants of health included building trust, choosing the right moment and making clear that screening is standard protocol.
Despite the concerns they cited about discussing social needs with pediatricians, particularly their more sensitive needs, most parents in these groups responded enthusiastically when the moderators asked for their ideas about how pediatricians should approach discussing social determinants of health.
Pediatricians, along with other health care providers, are increasingly being asked to identify and help address social determinants of health. These efforts represent a transition for both the pediatricians and for parents. It is crucial for pediatricians to understand parents’ needs, concerns and goals as both parties adjust to this expanded vision of pediatric care. Pediatricians and their staffs must work with parents to build their comfort with disclosing information about social stressors, particularly those that are most sensitive.
The low-income parents in our focus groups understood their children were affected by the social determinants of health for which some pediatricians are screening. But they did not immediately identify pediatricians as sources of help with social needs—perhaps because few of them indicated having experienced pediatric care that attempted to address those needs. Parents’ frustration at the prospect of disclosing sensitive information without getting help may stem in part from their not expecting pediatricians to be able to help with those issues.
Many of these parents’ ideas for pediatricians about how to discuss social needs would likely strengthen the quality of pediatric primary care more generally—in particular, building long-term trusting relationships between parents and pediatricians. Addressing short appointments and long waits could also promote higher quality care if doing so created more time to discuss social needs and freed parents to take care of priorities like work or school rather than waiting for appointments to start.
Parents’ fear of child welfare agencies may be a particularly difficult challenge for pediatricians who want to screen for social determinants of health, given the high stakes involved. Parents in these groups worried about losing custody of their children if they disclosed information about some of the very social needs that can be most important for health and well-being. Parents’ suggestion that pediatricians should be transparent about what does and does not trigger reporting, however, could help allay at least some of their fears and could help build trust between them and pediatricians. Making clear that screening is standard protocol might begin to address low-income parents’ feelings of being discriminated against and judged. Lastly, attempts to screen for social determinants of health may be more successful if pediatricians develop partnerships with the community organizations and other social service providers that low-income families already trust and turn to for information and help.
This qualitative research provides rich insight into low-income parents’ views on social needs and screenings. These findings should inform future research and interventions focused on making sure screenings for social determinants of health meet the needs of parents and children. As a follow-up, a survey of low-income parents could explore how they rate the relative importance of various stressors and how widespread the fear of child welfare agencies is. A survey could also explore whether low-income parents’ views vary by factors such as race and ethnicity, the quality of their relationships with their children’s pediatricians, parents’ and children’s health status, and parents’ previous experiences with health care and social service systems.
As social determinants of health screenings become more common in pediatric primary care, qualitative and quantitative research can help us understand parents’ experiences of those screenings and can continue to engage parents in conversations about how to promote their children’s health and well-being by addressing social needs.
Parents Talk About Social Needs Screening—Identify Trust as a Major Issue (Georgetown Health Policy Institute Center for Children and Families, July 24, 2019)
Screening for Unmet Social Needs: Patient Engagement or Alienation? (NEJM Catalyst, July 20, 2020)
How Do Social Determinants of Health Affect Patient Wellness? (PatientEngagementHIT, October 9, 2020)