Research ArticleOriginal Research

Patient and Patient Caregiver Perspectives on Social Screening: A Review of the Literature

Erika M. Brown, Vishalli Loomba, Emilia De Marchis, Benjamín Aceves, Melanie Molina and Laura M. Gottlieb
The Journal of the American Board of Family Medicine February 2023, 36 (1) 66-78; DOI: https://doi.org/10.3122/jabfm.2022.220211R1

Article Figures & Data

Tables

  • Table 1.

    Characteristics of 16 Studies Describing Patient and Patient Caregiver Perspectives Regarding Multidomain Social Screening in US Health Care Settings

    First Author, Publication YearNData SourcePopulationStudy SettingRace/Ethnicity
    Wylie (2012)†50QualitativeAdolescent and young adult patientsPrimary careLatinx/Hispanic (28%)
    NL/H Black (48%)
    NL/H White (14%)
    Other (10%)
    Hassan (2013)401QuantitativeAdolescent and young adult patientsPrimary careLatinx/Hispanic (29%)
    NL/H Black (54%)
    NL/H Asian (2%)
    NL/H White (9%)
    Other (4%)
    Colvin (2016)143QuantitativeAdult patient caregiversInpatientLatinx/Hispanic (6%)
    Black (18%)
    White (71%)
    Other (12%)
    Careyva (2018) 115Mixed methodsAdult patients Primary careLatinx/Hispanic (68%)
    NL/H (32%)
    Hamity (2018)68QualitativeAdult patients, adult patient caregiversPrimary care; specialty care; EDN/A
    Byhoff (2019)†50QualitativeAdult patients, adult patient caregiversPrimary care; EDLatinx/Hispanic (31%)
    NL/H Black (37%)
    NL/H White (29%)
    Other (4%)
    De Marchis (2019)969QuantitativeAdult patients, adult patient caregiversPrimary care; EDLatinx/Hispanic (33%)
    NL/H Black (22%)
    NL/H White (36%)
    Other (9%)
    Kocielnik (2019)30Mixed methodsAdult patientsResearch settingLatinx/Hispanic (30%)
    NL/H Black (27%)
    NL/H White (20%)
    Other (20%)
    N/A (1%)
    Langerman (2019)516Quantitative Adolescent patients, adult patient caregiversEDAdolescents:
    Latinx/Hispanic (21%)
    NL/H Black (65%)
    NL/H White (7%)
    Other (6%)
    Caregivers:
    Latinx/Hispanic (8%)
    NL/H Black (69%)
    NL/H White (14%)
    Other (9%)
    Byhoff (2020)20Qualitative*Adult patientsPrimary careLatinx/Hispanic (100%)
    Emengo (2020)7QualitativeAdult patient caregiversPrimary careLatinx/Hispanic (29%)
    NL/H Black (14%)
    NL/H Asian (29%)
    N/A (29%)
    Rogers (2020)1161QuantitativeAdult patientsIntegrated health system clinics (details not specified)Latinx/Hispanic (50%)
    NL/H Black (6%)
    Asian (9%)
    NL/H White (30%)
    Other (3%)
    Oldfield (2021)154QuantitativeAdolescent patients, adult patient caregiversPrimary careAdolescents:
    Latinx/Hispanic (85%)
    Black (13%)
    Asian (1%)
    White (27%)
    Other (55%)
    Caregivers:
    Latinx/Hispanic (85%)
    Black (11%)
    White (31%)
    Other (58%)
    Palakshappa (2021)103QuantitativeAdult patientsPrimary careN/A
    Wallace (2021)10Qualitative*Adult patientsEDLatinx/Hispanic (20%)
    NL/H Black (20%)
    NL/H Asian (10%)
    NL/H White (40%)
    N/A (10%)
    Spain (2021)106QualitativeAdult patient caregiversPrimary careLatinx/Hispanic (100%)

    • ↵*Mixed methods study that solely examined patient perspectives using qualitative methods.

    • ↵†Omitted findings regarding general acceptability because authors presented findings that were redundant with a larger sample of the same study.

    • Abbreviations: ED, emergency department; NL/H, non-Latinx/Hispanic.

  • Table 2.

    Rationale(s) Provided for Social Screening

    First Author (Year)Findings
    Key Quantitative Findings
    Rogers (2020)79% of participants agreed that their health system should use social needs information to improve care for patients

    • Females more likely to agree than males (OR, 1.7; 95% CI, 1.5, 2.0)

    • Black participants (OR, 2.3; 95% CI, 1.7, 3.2) and Hispanic participants (OR, 1.8; 95% CI, 1.1, 3.0) more likely to agree than White participants

    • Participants who completed some college or vocational school were less likely to agree than participants with less than a high school education (OR, 0.7; 95% CI, 1.4, 3.1); participants who completed college or additional schooling were more likely to agree (OR, 1.7; 95% CI, 1.4, 3.1)

    • No differences by social needs or age

    Key Qualitative Findings
    Wylie (2012)Some participants expressed that social screening could improve patient-provider relationships
    Few participants expressed that their health clinic is a safe space where participants could receive confidential help
    Hamity (2018)Most participants believed social screening data can be used to improve patient care
    Participants believed assessments need to lead to action
    Byhoff (2019)Participants expressed that social screening can be used to improve patient care and make them feel supported
    Participants expressed that health care settings are safe places to discuss social needs but that health care teams should not be expected to resolve social problems
    Byhoff (2020)Participants believed social screening can enhance whole-person care
    Emengo (2020)Participants expressed that social screening can provide a safe space for expression and make them feel supported
    Spain (2021)Participants believed the clinic is a convenient, nonstigmatizing place to discuss social needs

    • Abbreviations: OR, odds ratio; CI, confidence interval.

  • Table 3.

    General Acceptability of Social Screening

    First Author (Year)Findings
    Key Quantitative Findings
    Hassan (2013)33% of participants would welcome social screening

    • No differences by age, gender, or race/ethnicity

    Colvin (2016)71% of participants wanted their child’s doctor to ask about social issues

    • More common among participants who had been previously screened versus those who had not (86% vs 65%)

    • No differences by socioeconomic status

    De Marchis (2019)79% of participants found social screening appropriate

    • Higher odds among participants who had been previously screened versus those who had not (OR, 1.82; 95% CI, 1.16, 2.88)

    • Higher odds among participants who trusted their clinician versus those who did not (OR, 1.55; 95% CI, 1.00, 2.40)

    • Lower odds among participants who had experienced prior discrimination within the health care setting (OR, 0.66; 95% CI, 0.45, 0.95)

    • Higher odds among participants recruited from primary care settings versus EDs (OR, 1.70; 95% CI, 1.23, 2.38)

    • Higher odds among participants recruited from sites with 80%+ publicly insured uninsured participants (OR, 1.71; 95% CI, 1.03, 1.86)

    • No differences by age, sex, race/ethnicity, education, income, preferred language, child’s health, number of reported social risks, receipt of prior assistance, discomfort with screening domains, or interest in assistance

    Kocielnik (2019)Most participants found social screening comfortable (data not shown)

    • No difference between high- and low-literacy participants

    Rogers (2020)85% of participants agreed that their health system should ask about one or more social needs

    • Females more likely to agree than males (OR, 1.7; 95% CI, 1.3, 2.2)

    • Participants of Asian or Pacific Islander descent less likely to agree than White participants (OR, 0.7; 95% CI, 0.6, 0.9)

    • Participants who endorsed social needs more likely to agree than those who did not (OR, 3.7; 95% CI, 2.0, 6.9)

    • No differences by age, gender, or education

    Oldfield (2021)84% of participants found screening “comfortable” or “very comfortable”

    • No difference between caregivers and adolescents

    Key Qualitative Findings
    Hamity (2018)Most participants found social screening appropriate
    Byhoff (2019)*Participants’ acceptability was influenced by whether they felt respected by their provider(s)
    Byhoff (2020)Many participants found social screening acceptable
    Wallace (2021)Participants did not think communities would find social screening acceptable; expressed positive or neutral responses about being screened themselves
    Spain (2021)Many participants positively experienced being asked about social needs
    Some participants preferred to focus their clinical time on discussing their own health-related priorities

    • Abbreviations: ED, emergency department; OR, odds ratio; CI, confidence interval.

    • ↵*Omitted other findings regarding general acceptability because authors presented information that was redundant with a larger sample of the same study.

  • Table 4.

    Preferences for Mode or Administration of Social Screening

    First Author (Year)Findings
    Key Quantitative Findings
    Kocielnik (2019)72% of low-literacy patients favored chatbot-based screening over a self-administered survey (compared to 11% of high-literacy participants)
    Palakshappa (2021)82% of participants found tablet-based system easy to use
    85% of participants thought most people would learn to use the tablet-based system quickly
    87% of participants felt very confident using the tablet-based system
    Key Qualitative Findings
    Wylie (2012)Most participants found a self-administered, computer-based questionnaire easy to use
    Careyva (2018) Many participants expressed that tablet-based, self-administered social screening was acceptable

    • Younger participants expressed concerns regarding older participants’ technological literacy

    • Some older participants expressed a preference for speaking with a person over using a tablet

    Hamity (2018)Previously screened participants wanted screening done in more preventive contexts than the ED
    Byhoff (2019)Participants believed social screening must be conducted with compassion and empathy
    Participants had no strong preference for in-person or electronic screening or when social screening should be conducted during the medical visit
    Byhoff (2020)Many participants believed that having a strong relationship with providers made participants more comfortable sharing information regarding their social needs
    Participants believed that transparency/trust demonstrated throughout the screening process was important
    Emengo (2020)Participants preferred patient navigators to conduct screens over physicians
    Participants were satisfied with being screened in waiting room
    Wallace (2021)Participants would feel comfortable disclosing information to providers who demonstrated that they genuinely cared for participants’ well-being; most examples provided were of nurses and community health workers
    Spain (2021)Participants preferred to be screened by nurses and community health workers over clinicians
    Many participants appreciated empathetic and respectful approach that centered listening, relationship-building, and follow-up
    Participants did not want to disclose social circumstances without a subsequent conversation or follow-up

    • Abbreviation: ED, emergency department.

  • Table 5.

    Acceptability of Social Screening Domains

    First Author (Year)Findings
    Key Quantitative Findings
    Careyva (2018) A greater percentage of participants ranked health/health care domains as screening priorities rather than social domains:

    • 26% ranked access to health care as a priority domain

    • 24% ranked health-promoting behaviors as a priority domain

    • 15% ranked family responsibilities as a priority domain

    • 14% ranked financial resources as a priority domain

    • 6% ranked education and employment as a priority domain

    • 6% ranked transportation as a priority domain

    • 1% ranked legal services as a priority domain

    Langerman (2019)59% of participants found sex trafficking and 65% found housing to be acceptable screening domains

    • Adolescents less likely than patient caregivers to find sex trafficking to be an acceptable screening domain (OR, 0.58; 95% CI, 0.39, 0.86)

    • No differences by gender

    Key Qualitative Findings
    Wylie (2012)Few participants found income sensitive/embarrassing to discuss
    Few participants found food security status sensitive/embarrassing to discuss
    No participants verbalized finding housing sensitive/embarrassing to discuss
    Some participants were confused regarding social domains traditionally handled by parents, such as the use of food stamps, housing, and income security
    Hamity (2018)The majority of participants thought their health system should ask about food affordability and basic living expenses, housing and homelessness, social isolation, and transportation
    Byhoff (2020)All participants found immigration to be an acceptable screening domain
    Emengo (2020)Participants found housing, employment, and social isolation to be acceptable screening domains

    • Abbreviations: OR, odds ratio; CI, confidence interval.

  • Table 6.

    Acceptability of Social Screening Data Documentation and Sharing

    First Author (Year)Findings
    Key Quantitative Findings
    De Marchis (2019)65% of participants were comfortable with integrating social screening data into their EHR

    • Higher odds among participants who had received prior assistance (OR, 1.47; 95% CI, 1.04, 2.07)

    • No differences by age, sex, race/ethnicity, education, income, preferred language, child’s health, number of reported social risks, prior screening experience, discomfort with screening domains, interest in assistance, trust in clinician, prior discrimination within the health care setting, health care setting, or percentage of the patient population publicly insured or uninsured

    Key Qualitative Findings
    Wylie (2012)Some participants spoke in detail about privacy (concerns)
    Hamity (2018)Some participants were concerned about how information would be used and with whom it would be shared
    Some participants were concerned about how to update their status once it had changed
    Byhoff (2019)Several participants worried about discrimination, bias, and privacy concerns, including EHR documentation
    Some participants worried about responses being shared outside of the health care setting
    Emengo (2020)Few participants were concerned about physicians receiving results
    Wallace (2021)Some participants were concerned that disclosing sensitive information might bias providers against them
    None of the participants wanted their social needs documented in medical record
    Participants were concerned about information following them after their circumstances had changed
    Spain (2021)Some participants were concerned about oversurveillance of communities of color and privacy

    • Abbreviations: EHR, electronic health record; OR, odds ratio; CI, confidence interval.

  • First Author (Year)GRADE ScoreRationale for GRADE Score
    Wylie (2012) Very low

    • Small, nonrepresentative convenience sample based in a single health care setting

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Hassan (2013)Very low

    • Small, nonrepresentative convenience sample based in a single health care setting

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Colvin (2016)Very low

    • Small, nonrepresentative convenience sample based in in multiple health care settings within the same system

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Careyva (2018) Very low

    • Small, nonrepresentative convenience sample based in multiple clinics

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Hamity (2018)Very low

    • Small convenience sample (no sociodemographic information provided) based in multiple health care settings within the same system

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Byhoff (2019)Very low

    • Small, nonrepresentative convenience sample based in multiple health care settings across several regions

    • Exploratory and cross-sectional study design

    • Responses self-reported

    De Marchis (2019)Low

    • Large, nonrepresentative convenience sample based in multiple health care settings across several regions

    • Exploratory and cross-sectional study design

    • Responses self-reported

    • Accounted for some sources of confounding using multivariable statistical models

    Kocielnik (2019)Very low

    • Small, nonrepresentative convenience sample based in a single research setting

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Langerman (2019)Very low

    • Small, nonrepresentative convenience sample based in a single health care setting

    • Exploratory and cross-sectional study design

    • Responses self-reported

    • Accounted for some sources of confounding using multivariable statistical models

    Byhoff (2020)Very low

    • Small, nonrepresentative convenience sample based in a single health care setting

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Emengo (2020)Very low

    • Extremely small, nonrepresentative convenience sample based in a single health care setting

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Rogers (2020)Low

    • Large, nonrepresentative convenience sample based in in multiple health care settings within the same system

    • Exploratory and cross-sectional study design

    • Responses self-reported

    • Accounted for some sources of confounding using multivariable statistical models

    Oldfield (2021)Very low

    • Small, nonrepresentative convenience sample based in a single health care setting

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Palakshappa (2021)Very low

    • Small, nonrepresentative convenience sample based in a single health care setting

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Wallace (2021)Very low

    • Extremely small, nonrepresentative convenience sample based in a single health care setting

    • Exploratory and cross-sectional study design

    • Responses self-reported

    Spain (2021)Very low

    • Small, nonrepresentative convenience sample

    • Exploratory and cross-sectional study design

    • Responses self-reported

    • Abbreviation: GRADE, Grading Recommendations Assessment Development and Evaluation.

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