Low literacy self-care management patient education for a multi-lingual heart
failure population: Results of a pilot study

Victoria Vaughan Dickson PhD, FAHA, FAAN, Deborah Chyun PhD,

RN, FAHA, FAAN, Cristina Caridi MA, Jill K. Gregory MFA, CMI, FAMI,
Stuart Katz MD

PII: S0897-1897(15)00123-8
DOI: doi: 10.1016/j.apnr.2015.06.002
Reference: YAPNR 50692

To appear in: Applied Nursing Research

Received date: 5 December 2014

Revised date: 23 April 2015
Accepted date: 1 June 2015

Please cite this article as: Dickson, V.V., Chyun, D., Caridi, C., Gregory, J.K. &
Katz, S., Low literacy self-care management patient education for a multi-lingual heart
failure population: Results of a pilot study, Applied Nursing Research (2015), doi:
10.1016/j.apnr.2015.06.002

This is a PDF file of an unedited manuscript that has been accepted for publication.
As a service to our customers we are providing this early version of the manuscript.
The manuscript will undergo copyediting, typesetting, and review of the resulting proof
before it is published in its final form. Please note that during the production process
errors may be discovered which could affect the content, and all legal disclaimers that
apply to the journal pertain.
 ACCEPTED MANUSCRIPT
HF SELF-CARE LOW LITERACY EDUCATION 1

Low literacy self-care management patient education for a multi-lingual heart failure

population: Results of a pilot study

P T
RI
Victoria Vaughan Dickson, PhD, FAHA, FAANa
College of Nursing, New York University

SC
New York, USA

Deborah Chyun, PhD, RN, FAHA, FAAN

NU
College of Nursing, New York University
New York, USA
MA
Cristina Caridi, MA
School of Medicine, New York University
New York, USA
ED

Jill K Gregory, MFA, CMI, FAMI

Brooklyn, NY
PT

Stuart Katz, MD
School of Medicine, New York University
CE

New York, USA

AC

Corresponding Author
a
Victoria Vaughan Dickson, PhD, CRNP
College of Nursing
New York University
433 Broadway,7th Floor
New York, NY, USA 10010
Phone: 212-992-9426
Fax: 212-995-4564
Email: vdickson@nyu.edu

No Conflicts of Interest
 ACCEPTED MANUSCRIPT
HF SELF-CARE LOW LITERACY EDUCATION 2

Abstract

Purpose: The purpose of this pilot study was to test the impact of language-free, low literacy

T
self-care management patient education materials in an ethnically diverse multilingual heart

P
failure (HF) population.

RI
Methods: A one group pre-test-post-test design measured changes in self-care, knowledge and

SC
health related quality of life (HRQL) after a one month intervention using language-free, low

NU
literacy self-care management patient education materials and delivered by a health educator.
MA
Results: The ethnically diverse sample (n=21) was predominately male (72%), 48% Black and

42% Hispanic, 28% marginal/inadequate literacy. There were significant improvements in self-
ED

care and knowledge but not HRQL.

Conclusions: Language-free, low literacy self-care patient education may facilitate improved
PT

self-care and knowledge in diverse populations who are at risk for poor HF outcomes.
CE

KEYWORDS: heart failure, self-care, literacy, multi-lingual

AC
 ACCEPTED MANUSCRIPT
HF SELF-CARE LOW LITERACY EDUCATION 3

Introduction

While substantial progress has been made in the treatment of heart failure (HF) over the

past two decades, ethnic minority and low SES populations fare worse compared to whites

T
(Yancy, 2007). Self-care, which encompasses treatment adherence and symptom monitoring

P
RI
(self-care maintenance), and early response to often subtle symptoms of HF exacerbation (self-

SC
care management) (Riegel, Moser, et al., 2009) has been shown to improve HF outcomes but is

notoriously poor in ethnic minority and low SES populations (Dickson, McCarthy, Howe,

NU
Schipper, & Katz, 2013). Low health literacy which has been reported in 27% to 54% of patients

with HF contributes to poor HF self-care (Macabasco-O’Connell et al., 2011). Health literacy

MA
requires skill in reading, listening and decision-making as well as the ability to apply these skills

to health situations (Nielson-Bohlman, Panzer, & Kindig, 2004). For individuals with HF, health
ED

literacy includes the ability to understand instructions on medication bottles, appointment slips,
PT

and education materials, and the ability to negotiate complex health care systems. Unfortunately,

although there has been a great deal of research testing interventions to improve HF self-care,
CE

few have focused on patients with low health literacy especially those for whom English is a
AC

second language. The purpose of this study was to explore the impact of language-free, low-

literacy HF self-care management intervention in an ethnically diverse, multilingual population.

Study Design and Methods

In this pilot study we employed a one group pre-test post-test study design to test a low-

literacy self-care intervention in a sample of ethnically diverse adults (over age 21) with HF. The

intervention was delivered in 3 one-hour individual sessions over a one month period by a health

educator trained in the protocol-driven intervention that focused on building skill in self-care.

The focus of the self-care management intervention was to increase knowledge and skill in
 ACCEPTED MANUSCRIPT
HF SELF-CARE LOW LITERACY EDUCATION 4

symptom monitoring (i.e., daily weights and checking ankles for edema), symptom recognition,

interpretation and management using language-free low literacy materials as an aid in daily self-

care management.

P T
Sample

RI
A convenience sample of 21 patients with HF was recruited from an urban HF clinical

SC
setting. Individuals were eligible to participate in this study if they were over age 21 years,

English or Spanish speaking, and had been admitted to the hospital in the prior 6 months for

NU
decompensated HF. Consent materials were prepared at a fifth grade level and available in

Spanish. Certified translators were available to assist and answer any questions in the subject’s
MA
native language. The study was approved by the appropriate Institutional Review Boards.
ED

Measures

At baseline, sociodemographic characteristics (e.g., age, gender, ethnicity, education),

PT

and health literacy were measured. Health literacy was assessed using the S-TOFHLA, a 36-item
CE

timed test of reading comprehension (Baker, Williams, Parker, Gazmararian, & Nurss, 1999).

The S-TOFHLA is scored on a scale of 0 to 36 with 23-36 scored as adequate literacy; 17-22 is
AC

marginal literacy and 0-16 is inadequate literacy. The primary outcomes of self-care, knowledge

and HRQL were collected at baseline and at 1-month. Self-care was self-reported and measured

using the Self-Care of Heart Failure Index (SCHFIV6.2) (Riegel, Lee, Dickson, & Carlson,

2009). The 16 items that comprise the self-care maintenance and management scales (alpha

coefficients were .67 and.70) were used in this analysis. HF knowledge was assessed with the

15-item Dutch HF Knowledge Scale (DHFKS) (alpha coefficient was .82) (van der Wal,

Jaarsma, Moser, & van Veldhuisen, 2005). The Kansas City Cardiomyopathy Questionnaire
 ACCEPTED MANUSCRIPT
HF SELF-CARE LOW LITERACY EDUCATION 5

(KCCQ) overall quality of life score measured HRQL (alpha coefficient .93) (Green, Porter,

Bresnahan, & Spertus, 2000).

Data Analysis

P T
Paired t-tests were used to compare the outcomes measures in self-care, knowledge and

RI
HRQL before and after the intervention. A two-sided p-value of 0.05 was used to infer statistical

SC
significance. Cohen’s d was calculated as a standardized index of effect sizes. Analyses were

conducted using IBM SPSS v. 21.0 (Chicago, IL).

NU
Results
MA
Twenty-one adults with HF (48% Black, 42% Hispanic, 71% male, mean age 53±10

years) were enrolled and completed the intervention. Fifty-one percent reported not speaking
ED

English or English as a second language. The mean education level of the sample was 11±4

years; 28% had marginal or inadequate functional literacy on the S-TOFHLA. Participants
PT

reported significant improvements in self-care maintenance, self-care management and

CE

knowledge but not HRQL (table 1). There was a statistically significant improvement [t(14),

2.82, P=.013] in self-care maintenance. Specific symptom monitoring behaviors targeted by the
AC

intervention, daily weight monitoring (P<.01) and check ankle edema (P<.01) also improved

significantly. There was significant improvement in self-care management [t(10), 2.28, P=.046).

Two of the specific self-care management behaviors targeted by the intervention “recognizing

symptoms” and “evaluating treatment effectiveness” also improved significantly (P<.05).

Knowledge improved after the intervention [t(14) 5.52, P<.01]. More individuals answered the

targeted self-care management questions correctly after the intervention. At baseline, only 43%

of participants knew to weigh themselves daily compared to 93% after the intervention.
 ACCEPTED MANUSCRIPT
HF SELF-CARE LOW LITERACY EDUCATION 6

Discussion

The results of our study suggest that easy to use, language-free, low literacy educational

materials can lead to significant improvement in HF self-care management behaviors, which are

P T
critical to averting adverse HF outcomes. Others have tested low literacy materials that are

RI
written for low educational levels and supplemented by multiple strategies with similar findings.

SC
DeWalt and colleagues(2012) compared the effectiveness of a single literacy-sensitive training

educational session to a multisession training group who also received ongoing telephone-based

NU
support on clinical outcomes of hospitalization or death. They concluded that individuals with
MA
low literacy benefit from a different level of intervention, e.g., multisession, and reinforced that

different aspects of self-care may influence clinical outcomes. Our approach is unique in that the
ED

low-literacy materials in our intervention were completely language-free. The graphic

illustrations of the symptom monitoring behaviors (e.g. daily weights and checking ankles for
PT

edema) reinforced the self-care intervention delivered by the health educator and facilitated use
CE

by family members or social supports at home. Such an approach may be easily translated into

the clinical setting.

AC

Our findings that HRQL did not improve is also consistent with other research in this

area (DeWalt et al., 2004). In our prior intervention study (Dickson et al., 2014), qualitative data

from focus groups revealed that for many patients, the requirements of day-to-day self-care were

described as “hard work”. Vigilance in symptom monitoring and routine behaviors necessary to

engage in daily self-care was perceived as burdensome. Similarly, this intervention focused on

daily symptom monitoring and symptom recognition and may have been considered stressful

contributing to the non-significant HRQL findings. A longer period of successful self-care that is
 ACCEPTED MANUSCRIPT
HF SELF-CARE LOW LITERACY EDUCATION 7

perceived as improving symptoms rather than burdening patients may be necessary to achieve

significant improvements in HRQL.

These promising results are limited by the one group pre-test-post-test design and small,

P T
mostly male sample size. Although our sample was ethnically diverse, small sample size limited

RI
comparison between groups by native language. Interestingly, although 51% of the sample was

SC
non-English speaking or English as a second language, health literacy levels were adequate in

the majority. Future research is needed to test the utility of our materials in other multi-lingual,

NU
low literacy populations. Objective measures of self-care and skill acquisition is also indicated.

Research Implications
MA
The results of this study have several important implications for research and practice.
ED

The simple format of the language-free, low literacy materials likely facilitated use at home by

patients and their caregivers. According to recommendations of the HFSA statement on HF

PT

education and health literacy, patient education materials should be provided in the language
CE

preference of the patient (Evangelista et al., 2010). When that is not possible, illustrative patient

education materials as we developed may be used in clinical practice to reinforce verbal

AC

instructions. Since our language-free low literacy materials focused on a subset of self-care

behaviors, research is needed to develop and test materials that address the other important self-

care behaviors. A larger RCT with a longer follow up period that incorporates objective

measures of self-care and skill acquisition, and healthcare utilization outcomes is warranted. Our

study also reinforces the clinical importance of assessing health literacy. Nearly a third of our

community dwelling sample had inadequate literacy. Research is also needed to develop

effective and efficient means to test health literacy in the busy clinical setting.
 ACCEPTED MANUSCRIPT
HF SELF-CARE LOW LITERACY EDUCATION 8

Conclusion

Since health disparities that vulnerable populations with HF face are shaped by multiple

socioeconomic and cultural factors, including low-literacy and language barriers, availability of

P T
low-literacy self-care patient education materials may facilitate the development of the skills

RI
necessary for better self-management and improve HF outcomes in ethnically-diverse and multi-

SC
lingual populations.

ACKNOWLEDGEMENT: New York Community Trust Grant

NU
References
Baker, D. W., Williams, M. V., Parker, R. M., Gazmararian, J. A., & Nurss, J. (1999).
Development of a brief test to measure functional health literacy. Patient Educ Couns,
MA
38(1), 33-42.
DeWalt, D., Pignone, M., Malone, R., Rawls, C., Kosnar, M., George, G., . . . Angel, B. (2004).
Development and pilot testing of a disease management program for low literacy patients
with heart failure. Patient Education and Counseling, 55, 78-86.
ED

DeWalt, D., Schillinger, D., Ruo, B., Bibbins-Domingo, K., Baker, D. W., Holmes, G. M., . . .
Pignone, M. (2012). Multisite randomized trial of a single-session versus multisession
literacy-sensitive self-care intervention for patients with heart failure. Circulation,
PT

125(23), 2854-2862. doi: 10.1161/circulationaha.111.081745

Dickson, V., McCarthy, M., Howe, A., Schipper, J., & Katz, S. (2013). Socio-cultural influences
on heart failure self-care among an ethnic minority black population Journal of
CE

Cardiovascular Nursing, 28(2), 111-118.

Dickson, V., Melkus, G., Katz, S., Levine-Wong, A., Dillworth, J., Cleland, C., & Riegel, B.
(2014). Building Skill in Heart Failure Self-Care among Community Dwelling Older
AC

Adults: Results of a Pilot Study. Patient Education and Counseling(0).

Evangelista, L. S., Rasmusson, K. D., Laramee, A. S., Barr, J., Ammon, S. E., Dunbar, S., . . .
Yancy, C. W. (2010). Health Literacy and the Patient With Heart Failure—Implications
for Patient Care and Research: A Consensus Statement of the Heart Failure Society of
America. Journal of Cardiac Failure, 16(1), 9-16. doi: 10.1016/j.cardfail.2009.10.026
Green, C., Porter, C., Bresnahan, D., & Spertus, J. (2000). Development and evaluation of the
Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart
failure. Journal of the American College of Cardiology, 35(5), 1245-1255.
Macabasco-O’Connell, A., DeWalt, D., Broucksou, K., Hawk, V., Baker, D., Schillinger, D., . . .
Pignone, M. (2011). Relationship Between Literacy, Knowledge, Self-Care Behaviors,
and Heart Failure-Related Quality of Life Among Patients With Heart Failure. Journal of
General Internal Medicine, 26(9), 979-986. doi: 10.1007/s11606-011-1668-y
Nielson-Bohlman, L., Panzer, A., & Kindig, D. (2004). Health Literacy: A Prescription to End
Confusion. Washington DC: The National Academies Press.
Riegel, B., Lee, C., Dickson, V., & Carlson, B. (2009). An update on the Self-Care of Heart
Failure Index. Journal of Cardiovascular Nursing, 24(6), 485-497.
 ACCEPTED MANUSCRIPT
HF SELF-CARE LOW LITERACY EDUCATION 9

Riegel, B., Moser, D., Anker, S., Appel, L., Dunbar, S., Grady, K. L., . . . Whellan, D. J. (2009).
State of the Science: Promoting Self-Care in Persons With Heart Failure: A Scientific
Statement From the American Heart Association. Circulation 120(12), 1141-1163.
van der Wal, M., Jaarsma, T., Moser, D., & van Veldhuisen, D. (2005). Development and testing
of the Dutch Heart Failure Knowledge Scale. European Journal of Cardiovascular

T
Nursing.

P
Yancy, C. (2007). Heart failure in African Americans. American Journal of Cardiology, 96, 3-
12.

RI
SC
NU
MA
ED
PT
CE
AC
 ACCEPTED MANUSCRIPT
HF SELF-CARE LOW LITERACY EDUCATION
10

Table 1 Changes in Outcomes

Baseline M(SD) 1-month M(SD) P Cohen’s d
SCHFI Self-Care 60.4(16) 70.4(16)# .014 .75*
Maintenance

T
SCHFI Self-Care 57.3(26) 76.4(24)# .046 .69*

P
Management
DHFKS Knowledge 9.8(2) 12.2(1) .000 1.5**

RI
KCCQ Overall Summary 70.2(25) 73.4(24) .34 N/A
Score

SC
* Moderate to large effect size; **Large effect size; # clinically significant change (10 or more
points)
Note: SCHFI- Self-Care of Heart Failure Index; DHFKS- Dutch Heart Failure Knowledge

NU
Survey; KCCQ- Kansas City Cardiomyopathy Questionnaire.
MA
ED
PT
CE
AC