Exploring the Association between Maternal Health Literacy and Pediatric Healthcare Utilization
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Exploring the Association between Maternal Health Literacy and Pediatric Healthcare Utilization

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Rosemary Frasso's presentation from the...

Rosemary Frasso's presentation from the

Penn Urban Doctoral Symposium

May 13, 2011

Co-sponsored with Penn’s Urban Studies program, this symposium celebrates the work of graduating urban-focused doctoral candidates. Graduates present and discuss their dissertation findings. Luncheon attended by the students, their families and their committees follows.

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  • IOM, health people 2010, AMA Not just reading
  • Temporary assistance for needy families
  • Linking the records: Mothers ~ birth certificate ~ children’s SSN ~ Medicaid claims Is maternal HL associated pediatric healthcare use? If and to what extent does maternal HL mediate or moderate relationships between the predisposing and enabling factors and the dependent variables understudy?
  • We  employed a HEDIS measure, appropriate to our age group of interest, which explicitly described which Current Procedural Terminology (CPT) and International Classification of Diseases 9thRevision, Clinical Modification (ICD-9-CM) procedures and diagnostic codes indicate well-child preventive visits (National Committee for Quality Assurance, 2011; Zuckerman, et al., 2004). Sick –child visits are non-routine visits to a provider (for illness or injury) ED visits are any visit to an emergency department for care (for illness or injury) There is a precedent in the literature for setting this bench-mark at 4 for year 1 and 2 for year 2 of life, slightly lower than the AAP recommendations
  • This participant’s learning disability, in this context was a negative predisposing (denoted by circle A in diagram 4.5) factor and her decision not to disclose her reading disability to the clinician or ask her daughter to help her interpret the written education material can be categorized as a negative enabling factor (denoted by circle B in diagram 4.5) as well as factors that compromised her ability to assess the health care needs of her daughter (denoted by circle C in diagram 4.5). Ultimately these factors diminished the quality of the healthcare experience.
  • Not just about reading but there are a set of well validated measure that are used to screen for low health literacy REALM and STOFHLA consistent – so we focuses on the REALM
  • In statistics, the Kruskal–Wallis one-way analysis of variance by ranks (named after William Kruskal and W. Allen Wallis) is a non-parametric method for testing equality of population medians among groups. It is identical to a one-way analysis of variance with the data replaced by their ranks. It is an extension of the Mann–Whitney U test to 3 or more groups
  • Some 84% of our sample self identified as non-Hispanic Black, 5% White, 8% Latina and 4% (or one participant) did not identify with any of these racial/ethnic groups. Of the 185 women in our sample only 20 (11%) were born outside of the United States, and English was the first language for all but 18 (10%) participants. Age was captured at enrollment in the parent study, which was during the first prenatal visit. The majority of our participants (45%) were between 20 and 24 years of age, 28% were under age 20 and 27% were 25 and older. All participants reported having housing at the time of enrollment but the housing arrangements varied as did the level and type of financial assistance received for housing (both formal and informal). In our sample 135 (73%) women rented an apartment or house with no financial assistance, 26 (14%) women reported owning their own home, the remaining 13% lived with family and friends and had a variety of informal financial arrangements with the home-mates. Most of the women in our sample were unmarried at the time of enrollment in the study (83%) and 106 women (57%) were pregnant for the first time or with the first child they ultimately delivered (Table 4.1).
  • A variable functions as a mediator when it meets the followingconditions: (a) variations in levels of the independent variablesignificantly account for variations in the presumed mediator(i.e., Path a), (b) variations in the mediator significantly accountfor variations in the dependent variable (i.e., Path b), and(c) when Paths a and b are controlled, a previously significantrelation between the independent and dependent variables is nolonger significant, with the strongest demonstration of mediationoccurring when Path c is zero.
  • Controlled for REALM even though there was not sig association between REALM and the DV Or, instead of adding each of these chi2 values and the p-values, you can out a foot note that the likelihood ratio test was used to evaluate the additional predictive power of the reading score in the regression models. None of the p-values were significant and hence adding the reading score did not increase the strength of fit of any of the models.
  • impact of the noise intensity as a predictor (Path a), the impactof controllability as a moderator (Path b), and the interactionor product of these two (Path c). The moderator hypothesis issupported if the interaction (Path c) is significant. There mayalso be significant main effects for the predictor and the moderator(Paths a and b), but these are not directly relevant conceptuallyto testing the moderator hypothesis.In addition to these basic considerations, it is desirable thatthe moderator variable be uncorrelated with both the predictorand the criterion (the dependent variable) to provide a clearlyinterpretable interaction term. Another property of the moderatorvariable apparent from Figure 1 is that, unlike the mediator-predictor relation (where the predictor is causally antecedentto the mediator), moderators and predictors are at the samelevel in regard to their role as causal variables antecedent orexogenous to certain criterion effects. That is, moderator variablesalways function as independent variables, whereas mediatingevents shift roles from effects to causes, depending on thefocus oftbe analysis.
  • General Educational Development Test (GED).
  • This participant’s learning disability, in this context was a negative predisposing (denoted by circle A in diagram 4.5) factor and her decision not to disclose her reading disability to the clinician or ask her daughter to help her interpret the written education material can be categorized as a negative enabling factor (denoted by circle B in diagram 4.5) as well as factors that compromised her ability to assess the health care needs of her daughter (denoted by circle C in diagram 4.5). Ultimately these factors diminished the quality of the healthcare experience.
  • This participant’s learning disability, in this context was a negative predisposing (denoted by circle A in diagram 4.5) factor and her decision not to disclose her reading disability to the clinician or ask her daughter to help her interpret the written education material can be categorized as a negative enabling factor (denoted by circle B in diagram 4.5) as well as factors that compromised her ability to assess the health care needs of her daughter (denoted by circle C in diagram 4.5). Ultimately these factors diminished the quality of the healthcare experience.
  • This participant’s learning disability, in this context was a negative predisposing (denoted by circle A in diagram 4.5) factor and her decision not to disclose her reading disability to the clinician or ask her daughter to help her interpret the written education material can be categorized as a negative enabling factor (denoted by circle B in diagram 4.5) as well as factors that compromised her ability to assess the health care needs of her daughter (denoted by circle C in diagram 4.5). Ultimately these factors diminished the quality of the healthcare experience.
  • This participant’s learning disability, in this context was a negative predisposing (denoted by circle A in diagram 4.5) factor and her decision not to disclose her reading disability to the clinician or ask her daughter to help her interpret the written education material can be categorized as a negative enabling factor (denoted by circle B in diagram 4.5) as well as factors that compromised her ability to assess the health care needs of her daughter (denoted by circle C in diagram 4.5). Ultimately these factors diminished the quality of the healthcare experience.
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Exploring the Association between Maternal Health Literacy and Pediatric Healthcare Utilization Exploring the Association between Maternal Health Literacy and Pediatric Healthcare Utilization Presentation Transcript

  •  Exploring the Association between Maternal Health Literacy and Pediatric Healthcare Utilization:Is Low Health Literacy a Barrier of Concern?
    Rosemary Frasso
    Dissertation Committee
    Chair ~ Phyllis Solomon, PhD
    Steve Marcus PhD
    Ian Bennett, MD, PhD
    Agency for Healthcare Research and Quality
    Dissertation Grant
    1 R36 HS017471-01
  • Agenda
    Background and Significance
    Methods
    Results
    Discussion
    Limitations and Lessons Learned
    Next Steps
    2
  • Background
    Health Literacy (HL)
    “the degree to which individuals have
    the capacity to obtain, process,
    and understand basic health
    information and services needed to make appropriate health decisions”
    DHHS, 2000
    3
  • Background
     We know
    Women with low health literacy have poor health outcomes and underutilize preventive care
    4
  • Background
     We know
    Appropriate use of pediatric preventive care is associated with significant reductions in morbidity and mortality and has been shown to reduce healthcare costs and decrease hospital admissions
    5
  • Significance
    We don’t know
    Are children of mothers with low health literacy at a disadvantage similar to that of their mothers?
    Conflicting evidence about the impact of maternal HL on pediatric social and health outcomes
    Pati et al (2011) -TANF/Vaccination compliance
    6
  • Methods
    Mix methods
    Quantitative (secondary data analysis)
    Qualitative
    14 semi-structured interviews
    11 different mothers with varied HL
    1 critical case exploration
    MOTHERS FROM
    THE PARENT
    STUDY
    (REALM)
    CHILDREN FROM
    THE MEDICAID
    CLAIM DATA
    185 DYADS
    7
  • Parent Study
    Community based prospective cohort study of mothers and infants in Philadelphia
    Investigating the contextual, social, behavioral, and family context of maternal child health (extensive surveys)
    Followed from prenatal period to 24 months post partum
    >5000 participants
    1034 had health literacy assessments
    REALM / STOFHLA
    Funded by the CDC and National Institute of Child Health and Development
    8
    CDC (TS 312 15/15; Culhane) and NICHD (1R01 D36462 01A; Elo and Culhane)
  • Operationalized Independent Variables
    Predisposing
    Enabling
    Need
    9
    Demographic characteristics, such as race, age, and maternal education have been shown to impact parent driven pediatric health service use
    Here Andersen grouped personal and family factors including social supports, income, insurance & physical access to providers
    Need, the strongest predictor of health service use based on how people view their own functional capacity, symptoms, & general state of health
    (and that of the children they care for)
  • Dependent Variables Operationalized
    10
    The primary outcome measure of preventive care utilization is the overall number of documented well-child visits in the first two years of life
    The AAP recommends 7 WCV in year 1 of life and 3 in year 2 of life
    ED. SCV, % Compliance
    CPT and ICD-9 Codes were used to identify these visits in the Medicaid claims files
    Well- Child Visits Year 1 /Year 2
    (WCV)
    Sick - Child Visits Year 1 /Year 2
    (SCV)
    ED Visits
    Year 1 /Year 2
    (EDV)
    % Compliant
    Year 1 /Year 2 (WCV)
    AAP, 2011
  • Andersen’s Model Modified
    3
    1
    2
    4
    11
  • Maternal Health Literacy and Outcomes of Interest Year 1 of Life
    12
  • Quantitative Analysis Revealed
    HL was not associated with the number of well-child visits, sick-child visits, ED visits or % compliance with a minimum number of visits in year 1 and year 2 of life
    HL did not prove to mediate or moderate the relationships between any of predisposing and enabling factors under study and our outcomes of interest
    Higher health literacy was not protective in this population
    13
  • Frequency Distribution Well-Child Visits Year 1
    14
    AAP Recommends 7
    82% of US children in this age group are meeting this guideline
  • Frequency Distribution Well-Child Visits Year 2
    15
    AAP Recommends
    3 WCV
  • Qualitative Analysis Revealed
    Women with low HL and women higher HL encountered an overlapping set of challenges when navigating the healthcare system 
    Several themes emerged and were used to elaborate on Andersen’s Model and shed light on the quantitative findings and a critical case emerged
    16
  • Need Factors
    Views & evaluation of the child’s functional capacity, symptoms, & general state of health
     
    Informed by health beliefs, values about health and illness & attitudes towards about health services (trust, respect†) and knowledge about health (literacy, access to information in order to appreciate need††).
     
    † Feeling respected by the provider and healthcare staff
    † Your opinion about your child’s health matters
    †† e.g. knowing when and what vaccinations a child needs
    Sources of information
    (lay, pseudo experts, experts)
     
    Compromises Ability to Assess Need
    Low Literacy
    Low Health Literacy
    Competing demands
    Lack of trust for the health care system or individual providers
    Demographics
    Race/Ethnicity
    Nativity *
    Age
    Education *
    Literacy
    • Health literacy
    • Ability to function w/o reading
    Language
    Housing
    Social Structure 
    Marital Status
    Parity*
    Few competing demands
    Compromising Factors
     Low literacy
     Low health literacy
     Learning disabilities
    • Dyslexia
     No coping strategy for dealing with literacy barriers
    Parity high – too many competing demands
     Mental Illness
    Personal /Family Resources
    Income
    People @ home
    Financial Support
    Employment *†
    Insurance
    Community Resources
    • Physical access to care
    • Availability/Convenience
    • Time in community /strength of ties
     Social support
     
    Literacy
    Strategies for working around low literacy
    Access to sources of health information
    Internet
    Access to information
    Communication
    Having an advocate
    Continuity of care
    Prior satisfaction with a healthcare provider
     
    Disabling Factors
    Power imbalance
    Lack of an advocate
    Limited or no access to health information
    Administrative/logistic hassles
    † Work gets in the way (unemployment)
    17
  • Thank You
    18
  • Special Thanks To
    Phyllis Solomon, PhD
    Steven Marcus, PhD
    Ian Bennett, MD, PhD
    Leny Mathew, MS
    Jennifer Culhane, PhD, MPH
    All the members of
    Dr. Culhane’s Paper Group
    Sara Cullen, MSW
    And of course my terrific kids for all their love, patience and support
    19
  • Some References (others available upon request)
    Agency for Healthcare Research and Quality. (2011, March 28). Low Health Literacy Linked to Higher Risk of Death and More Emergency Room Visits and Hospitalizations. Retrieved from http://www.ahrq.gov/news/press/pr2011/lowhlitpr.htm
    Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? J Health Soc Behav, 36(1), 1-10.
    Baron, R. M., & Kenny, D. A. (1986). The moderator-mediator variable distinction in social psychological research: Conceptual
    Berkman, N. D., Dewalt, D. A., Pignone, M. P., Sheridan, S. L., Lohr, K. N., Lux, L., Bonito, A. J. (2004). Literacy and health outcomes. Evid Rep Technol Assess (Summ), (87), 1-8.
    American Academy of Pediatrics, Committee on Practice and Ambulatory Medicine. (2000). Recommedations for preventive pediatric health care.
    Hakim, R. B., & Bye, B. V. (2001). Effectiveness of compliance with pediatric preventive care guidelines among Medicaid beneficiaries. Pediatrics, 108(1), 90-97.
    Shulman, S. (2006). Poor preventive care achievement and program retention among low birth weight infant Medicaid enrollees. Pediatrics, 118(5), e1509-1515. doi: peds.2004-0489 [pii] 10.1542/peds.2004-0489
    20
  • 21
  • 22
  • Measuring Health Literacy
    Rapid Assessment of Adult Literacy in Medicine
    REALM
    66 items
    Word familiarity
    Approximately three minutes
    Short Test of Functional Health Literacy in Adults
    STOFHLA
    36 items
    Functional health literacy
    Approximately 7 minutes
    23
    (Baker, Williams, Parker, Gazmararian, & Nurss, 1999; Davis, Bocchini, et al., 1996; Davis, et al., 1993; Davis, et al., 1994; Moon, et al., 1998)
  • A Critical Case Emerges
    24
  • Missed Opportunities
    “Yes, but I, but I’m like, OK, it prevents cancer, is there any side effects from it, he’s like no, no, it’s in the pamphlet and I’m like, I see that, I understand that, I understand it was on paper, but it’s different when you hear it from someone. And I just wish he would’ve had more of a conversation about it, ‘cause it was like, no, I, everybody’s getting it, and I’m like OK?”
    Note:
    This participant declined the HPV vaccine for her daughter, who she generally relies on to translate written materials.
    25
  • Benefit of Mix Methods
    New Concepts
    Lay informants
    Pseudo experts
    Experts
    Confirmation
    Parity
    Employment
    Unexpected findings (dyslexia example)
    “I don’t take advice from family or friends as much as I would a doctor”
    “I would call the hospital…... I got reprimanded for calling”
    “My cousin is in nursing school”
    “Friends, but their kids are younger so they don’t know”
    26
  • 27
  • 28
  • 29
  • REALM Grade Equivalent Scores
    30
  • Dependent Variables Operationalized
    We also documented the percent of dyads that were compliant with a minimum number of WCV per year
    There is a precedent in the literature for setting this bench-mark at 4 for year 1 and 2 for year 2 of life, slightly lower than the AAP recommendations
    CPT and ICD-9 Codes were used to identify these visits in the Medicaid claims files
    Compliant
    Year 1
    (WCV)
    Compliant
    Year 2
    (WCV)
    Shulmen, 2006
    31
  • Hypotheses
    Mothers with low health literacy (< 6th grade) will be less likely than mothers with marginal to higher health literacy (> 7th grade) to meet pediatric preventive care recommendations.
    32
  • Hypotheses
    Children of mothers with low health literacy (< 6th grade) will be more likely than children of mothers with marginal to high health literacy (> 7th grade) to
    visit an emergency room.
    be seen by a provider for a sick-child visit.
    33
  • Hypotheses
    Low maternal health literacy will mediate the relationship between negative predisposing and enabling factors and
    timely receipt of pediatric preventive care.
    pediatric emergency room visits.
    the number of sick-child visits.
    34
  • Hypotheses
    Low maternal health literacy will moderate the relationship between negative predisposing and enabling factors and
    timely receipt of pediatric preventive care.
    pediatric emergency room visits.
    the number of sick-child visits.
    35
  • Quantitative Analysis
    Categorical Variable
    Chi-squared test of independence
    Continuous Variables
    Wilcoxon rank-sum test (Mann-Whitney-Wilcoxon) or Kruskal-Wallis non-parametric test
    Linear Regression
    Moderation Analysis
    Mediation Analysis
    Likelihood ratio test
    STATA Data Analysis Statistical Software
    36
  • Qualitative Methods
    In depth semi structured interviews
    Issues of interest
    Need factors / perceived need
    Health beliefs
    Social support/relationships
    Ability to navigate the healthcare system
    Transcribed verbatim
    Coded using NVIVO8 (QSR) software guided by Andersen’s model
    37
  • Guiding Qualitative Hypotheses
    Qualitative interviews will show that mothers with low health literacy will report different issues related to access to preventive pediatric care than mothers with marginal to high health literacy.
    Additionally, they will perceive different barriers to care and will suggest different interventions
    to reduce these barriers.
    38
  • The Analytic Sample
    Quantitative
    • 84% African American
    • 5% White
    • 8% Latina
    • 89% Born in the US
    • All inner-city
    • > 19 years of age
    • 84% completed HS
    • Enrollment 1st prenatal
    visit (14.8 ± 0.2 weeks)
    • PH Centers in Philadelphia
    • February 2000 -October 2002
    • Income (75% <$11,610/yr)
    • Children had >10 months of …Medicaid eligibility/yr
    • 14% low HL
    39
    Non English Speakers (ESL OK)
    N=27
  • Results
    40
  • Andersen’s Model Modified
    3
    1
    2
    4
    41
  • Pathway 1
    Percent of Participants in Education Group
    by Health Literacy Level
    REALM
    Percent of Participants in Each Age Group
    by Health Literacy Level
    Maternal Education
    REALM
    Maternal Age
    42
  • Pathway 2
    • Predisposing
    • Race
    • Nativity
    • Age
    • Education
    • First Language
    • Marital Status
    • Parity
    • Enabling
    • Income
    • Number of people supported by income
    • Any other financial support
    • SSI and Unemployment /WMC
    • Money left over at the end of the month
    • Worried about Money
    • Insurance
    43
  • Statistically Significant Associations
    • Predisposing
    • Race
    • Age
    • Marital Status
    • Parity
    • Enabling
    • SSI and Unemployment /WMC
    • Insurance
    • Predisposing
    • Race
    • Nativity
    • Age
    • Education
    • First Language
    • Marital Status
    • Parity
    • Enabling
    • Income
    • Number of people supported by income
    • Any other financial support
    • SSI and Unemployment /WMC
    • Money left over at the end of the month
    • Worried about Money
    • Insurance
    44
  • Statistically Significant Associations
    Parity
    median (range) / p –value < 0.05*
    -WCV YR 1 / 0.02*
    1 child 4 (0-7)
    2+ children 3 (0-10)
    -SCV YR 2 / 0.01*
    1 child 1 (0-9)
    2+ children 0 (0-6)
    -ED Visits 1 / 0.01*
    1 child 1 (0-13)
    2+ children 0 (0-8)
    -ED Visits 1 / 0.01*
    1 child 1 (0-13)
    2+ children 0 (0-8)
    45
  • Statistically Significant Associations
    Race
    median (range) / p –value < 0.05*
    • ED visits YR 1/ 0.001*
    Non Hispanic Whites 0.5 (0 – 5)
    Latina 3 (0-8)
    Non Hispanic Black 1 (1 -13)
    Other 0 (0 -0)
    46
  • Statistically Significant Associations
    Age
    median (range) / p –value < 0.05*
    • ED visits YR 1/ 0.03*
    < 20 2 (0 -13)
    20-<25 1 (0 -10)
    25-<30 0.5 (0 -6)
    > 30 1 (0 – 8)
    47
  • Statistically Significant Associations
    Language
    median (range) / p –value < 0.05*
    • ED visits YR 1/ 0.05*
    Eng (yes) 1 (0-13)
    Eng (no) 3 (0-8)
    Married
    median (range) / p –value < 0.05*
    • ED visits YR 1/ 0.03*
    M (yes) 1 (0-7)
    M (no) 3 (0-13)
    48
  • Statistically Significant Associations
    Unemployment/Workman’s Comp
    median (range) / p –value < 0.05*
    • WCV YR 2 / 0.04*
    Received(yes) 2.5 (1-4)
    Received(no) 1 (0-9)
    • SCV YR 1 / 0.02*
    M (yes) 1.5 (1-4)
    M (no) 0 (0-9)
    49
  • Statistically Significant Associations
    Mothers Insurance
    Status @ Enrollment
    median (range) / p –value < 0.05*
    • WCV YR 2 / 0.01*
    Private 1 (0-3)
    Medicaid 1 (0-5)
    Uninsured 2 (0-9)
    50
  • Statistically Significant Associations
    Language
    median (range) / p –value < 0.05*
    • Compliant YR 2/ 0.05*
    Eng (yes) 1 (0-13)
    Eng (no) 3 (0-8)
    Married
    median (range) / p –value < 0.05*
    • ED visits YR 1/ 0.03*
    M (yes) 1 (0-7)
    M (no) 3 (0-13)
    51
  • Statistically Significant Associations
    % Compliant Year 2
    Education (P-value 0.02*)
    Post HS 70% > 2 visits year 2
    HS or GED 50% > 2 visits year 2
    < HS 37% > 2 visits year 2
    Maternal Insurance Status (P-value 0.02*)
    Private 41% > 2 visits year 2
    Medicaid 29% > 2 visits year 2
    Uninsured 63% > 2 visits year 2
    52
  • Pathway 3 and Mediation
    Maternal Health Literacy
    Mediator
  • Controlling for the REALM ~ Likelihood Ratio Tests
    54
    1.49 (0.48)
    0.51 (0.76)
    1.77 (0.41)
    0.29 (0.87)
    1.09 (0.58)
    1.02 (0.60)
    1.89 (0.39)
    1.65 (0.44)
    0.39 (0.82)
    0.33 (0.85)
    0.56 (0.76)
  • Pathway 4Moderation
    55
    Parity
    Well-Child Care Sick-Child CareED Visits % Compliance (Minimum # of visits/year)
    REALM
    (categorical)
    Parity
    X
    REALM
    Planned Analysis
    Barron & Kenny, 1986
  • Quantitative Analysis Revealed
    HL was not associated with the number of well-child visits, sick-child visits, ED visits or % compliance with a minimum number of visits in year 1 and year 2 of life
    When we controlled for health literacy we saw no impact on establish associations between a set of independent variables and our outcome variables
    56
  • Associations of Interest
    66% of the women in our sample had completed high school or GED however only 50% had a REALM score > 9th grade
    100% of the women in the highest HL group were born in the US while that was the case for only 80% of the women in the low HL group
    57
  • Qualitative Analysis Revealed
    Women with low HL and women higher HL encountered an overlapping set of challenges when navigating the healthcare system 
    Confirmed the quantitative findings (for the most part kids are getting the minimum number of visits)
    Several themes emerged and were used to elaborate on Andersen’s Model and shed light on the quantitative findings
    Critical case emerged
    58
  • Need Factors
    Views & evaluation of the child’s functional capacity, symptoms, & general state of health
     
    Informed by health beliefs, values about health and illness & attitudes towards about health services and knowledge about health
    Personal /Family Resources
    Income
    People @ home
    Financial Support
    Employment
    Insurance
    Community Resources
    Demographics
    Race/Ethnicity
    Nativity
    Age
    Education
    Literacy
    Language
    Housing
    Social Structure 
    Marital Status
    Parity
    59
    Discussion
  • Need Factors
    Views & evaluation of the child’s functional capacity, symptoms, & general state of health
     
    Informed by health beliefs, values about health and illness & attitudes towards about health services (trust, respect†) and knowledge about health (literacy, access to information in order to appreciate need††).
     
    † Feeling respected by the provider and healthcare staff
    † Your opinion about your child’s health matters
    †† e.g. knowing when and what vaccinations a child needs
    Sources of information
    (lay, pseudo experts, experts)
     
    Compromises Ability to Assess Need
    Low Literacy
    Low Health Literacy
    Competing demands
    Lack of trust for the health care system or individual providers
    Demographics
    Race/Ethnicity
    Nativity *
    Age
    Education *
    Literacy
    • Health literacy
    • Ability to function w/o reading
    Language
    Housing
    Social Structure 
    Marital Status
    Parity*
    Few competing demands
    Compromising Factors
     Low literacy
     Low health literacy
     Learning disabilities
    Dyslexia
      No coping strategy for dealing with .. literacy barriers
    Parity high
    too many competing demands
    Mental Illness
    * IV in the quantitative analysis and a theme in the qualitative analysis
    Personal /Family Resources
    Income
    People @ home
    Financial Support
    Employment *†
    Insurance
    Community Resources
    • Physical access to care
    • Availability/Convenience
    • Time in community /strength of ties
     .Social support
     
    Literacy
    Strategies for working around low literacy
    Access to sources of health information
    Internet
    Access to information
    Communication
    Having an advocate
    Continuity of care
    Prior satisfaction with a healthcare provider
     
    Disabling Factors
    Power imbalance
    Lack of an advocate
    Limited or no access to health information
    Administrative/logistic hassles
    † Work gets in the way (unemployment)
    60
  • Benefit of Mix Methods
    New Concepts
    Lay informants
    Pseudo experts
    Experts
    Confirmation
    Parity
    Employment
    Unexpected findings (dyslexia example)
    “I don’t take advice from family or friends as much as I would a doctor”
    “I would call the hospital…... I got reprimanded for calling”
    “My cousin is in nursing school”
    “Friends, but their kids are younger so they don’t know”
    61
  • Need Factors
    Views & evaluation of the child’s functional capacity, symptoms, & general state of health
     
    Informed by health beliefs, values about health and illness & attitudes towards about health services (trust, respect†) and knowledge about health (literacy, access to information in order to appreciate need††).
     
    † Feeling respected by the provider and healthcare staff
    † Your opinion about your child’s health matters
    †† e.g. knowing when and what vaccinations a child needs
    Sources of information
    (lay, pseudo experts, experts)
     
    Compromises Ability to Assess Need
    Low Literacy
    Low Health Literacy
    Competing demands
    Lack of trust for the health care system or individual providers
    Demographics
    Race/Ethnicity
    Nativity *
    Age
    Education *
    Literacy
    • Health literacy
    • Ability to function w/o reading
    Language
    Housing
    Social Structure 
    Marital Status
    Parity*
    Few competing demands
    Compromising Factors
     Low literacy
     Low health literacy
     Learning disabilities
    Dyslexia
      No coping strategy for dealing with .. literacy barriers
    Parity high
    too many competing demands
    Mental Illness
    Personal /Family Resources
    Income
    People @ home
    Financial Support
    Employment *†
    Insurance
    Community Resources
    • Physical access to care
    • Availability/Convenience
    • Time in community /strength of ties
     .Social support
     
    Literacy
    Strategies for working around low literacy
    Access to sources of health information
    Internet
    Access to information
    Communication
    Having an advocate
    Continuity of care
    Prior satisfaction with a healthcare provider
     
    Disabling Factors
    Power imbalance
    Lack of an advocate
    Limited or no access to health information
    Administrative/logistic hassles
    † Work gets in the way (unemployment)
    62
  • A Critical Case Emerges
    63
  • Need Factors
    Views & evaluation of the child’s functional capacity, symptoms, & general state of health
     
    Informed by health beliefs, values about health and illness & attitudes towards about health services (trust, respect†) and knowledge about health (literacy, access to information in order to appreciate need††).
     
    † Feeling respected by the provider and healthcare staff
    † Your opinion about your child’s health matters
    †† e.g. knowing when and what vaccinations a child needs
    Sources of information
    (lay, pseudo experts, experts)
     
    Compromises Ability to Assess Need
    Low Literacy
    Low Health Literacy
    Competing demands
    Lack of trust for the health care system or individual providers
    Demographics
    Race/Ethnicity
    Nativity *
    Age
    Education *
    Literacy
    • Health literacy
    • Ability to function w/o reading
    Language
    Housing
    Social Structure 
    Marital Status
    Parity*
    Few competing demands
    Compromising Factors
     Low literacy
     Low health literacy
     Learning disabilities
    • Dyslexia
     No coping strategy for dealing with literacy barriers
    Parity high – too many competing demands
     Mental Illness
    Personal /Family Resources
    Income
    People @ home
    Financial Support
    Employment *†
    Insurance
    Community Resources
    • Physical access to care
    • Availability/Convenience
    • Time in community /strength of ties
     Social support
     
    Literacy
    Strategies for working around low literacy
    Access to sources of health information
    Internet
    Access to information
    Communication
    Having an advocate
    Continuity of care
    Prior satisfaction with a healthcare provider
     
    Disabling Factors
    Power imbalance
    Lack of an advocate
    Limited or no access to health information
    Administrative/logistic hassles
    † Work gets in the way (unemployment)
    64
  • Missed Opportunities
    “Yes, but I, but I’m like, OK, it prevents cancer, is there any side effects from it, he’s like no, no, it’s in the pamphlet and I’m like, I see that, I understand that, I understand it was on paper, but it’s different when you hear it from someone. And I just wish he would’ve had more of a conversation about it, ‘cause it was like, no, I, everybody’s getting it, and I’m like OK?”
    Note:
    This participant declined the HPV vaccine for her daughter, who she generally relies on to translate written materials.
    65
  • Health Literacy
    50% of the group was compliant in year 1 and this did not vary by health literacy
    44% of the group was compliant in year 2 and again no variation by health literacy
    Does health literacy matter in this population?
    66
  • Limitations & Lessons Learned
    Sample size / power
    Inclusion criteria
    10 month of eligibility
    Locating the poorest readers
    REALM
    Was it reliable in the population?
    Does it need to be validated in the context of LD?
    Did not take full advantage of the available data*
    Limited generalizability and transferability
    67
  • Next Steps
    Augment the current analysis and submit a paper for publication
    Abstract has been sent to APHA
    Critical Case was presented at Health Literacy Annual Research Conference
    Need to further explore how a learning disability impacts health literacy
    68
  • Next Steps Continued
    Now that the dyads have been established we plan to revisit the survey data in order to explore additional research questions (many of which were brought to light in the qualitative arm of the study)
    For example:
    Feeling respected by a provider (qualitative)
    Mastery Scale and Coping Questions (parent study)
    “Sometimes I feel that I am being pushed around in life”
    “There is little I can do to change many of the important things in life”
    For example:
    Depression/mental illness (qualitative)
    Depression (parent study)
    69
  • Some References (others available upon request)
    Agency for Healthcare Research and Quality. (2011, March 28). Low Health Literacy Linked to Higher Risk of Death and More Emergency Room Visits and Hospitalizations. Retrieved from http://www.ahrq.gov/news/press/pr2011/lowhlitpr.htm
    Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? J Health Soc Behav, 36(1), 1-10.
    Baron, R. M., & Kenny, D. A. (1986). The moderator-mediator variable distinction in social psychological research: Conceptual
    Berkman, N. D., Dewalt, D. A., Pignone, M. P., Sheridan, S. L., Lohr, K. N., Lux, L., Bonito, A. J. (2004). Literacy and health outcomes. Evid Rep Technol Assess (Summ), (87), 1-8.
    American Academy of Pediatrics, Committee on Practice and Ambulatory Medicine. (2000). Recommedations for preventive pediatric health care.
    Hakim, R. B., & Bye, B. V. (2001). Effectiveness of compliance with pediatric preventive care guidelines among Medicaid beneficiaries. Pediatrics, 108(1), 90-97.
    Shulman, S. (2006). Poor preventive care achievement and program retention among low birth weight infant Medicaid enrollees. Pediatrics, 118(5), e1509-1515. doi: peds.2004-0489 [pii] 10.1542/peds.2004-0489
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