bs_bs_banner
Journal for Specialists in Pediatric Nursing
REVIEW ARTICLE
Health literacy in adolescents: an integrative review Elizabeth L. Perry Elizabeth L. Perry, MSN, RN, is an Assistant Instructor and Nursing Doctoral Candidate, The University of Texas at Austin, Austin, Texas, USA
Search terms Adolescent, child, health education, health knowledge, health literacy. Author contact [email protected], with a copy to the Editor: [email protected] Acknowledgement Thank you to Dr. Sharon Brown for her unwavering patience and guidance in the development of this integrative review and manuscript.
Abstract Purpose. To determine the state of the science of health literacy instruments and interventions for use in adolescents. Conclusions. There is a scarcity of literature regarding health literacy instruments and interventions for adolescents. Ten studies were included in the final table for analysis. One instrument shows high validity and reliability in English. Most interventions are exploratory, with two studies showing significant outcomes. Practice Implications. More research is needed to establish the appropriate evaluation of and effective interventions for health literacy in adolescents.
Disclosure: The author reports no actual or potential conflicts of interest. No external or intramural funding was received. First Received August 1, 2013; Final revision received January 22, 2014; Accepted for publication January 27, 2014. doi: 10.1111/jspn.12072
Approximately five million children in the United States are now living with a chronic illness such as asthma, type 1 and type 2 diabetes, cystic fibrosis, obesity, and sickle cell disease (National Center for Healthcare Statistics, 2006). It has been estimated that 90% of children with a chronic illness living in the United States will now live until at least the age of 20; thus, most of these children will be transferred from the care of a pediatrician to an adult health provider (Blum, 1995). Several recent studies show that the transfer of care from pediatric services to adult services in patients with chronic illness results in increased morbidity and mortality for these patients (Debaun & Telfair, 2012; Quinn, Rogers, McCavit, & Buchanan, 2010). While this problem is clearly identified in the literature, more research is needed to help identify facilitators and barriers to a successful transition of patients with chronic illness from pediatric care to adult care. If patients with chronic illness have higher health literacy as adolescents, they will potentially have better outcomes during and after transition. For this 210
article, health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan & Parker, 2000, p. vi). Higher health literacy and numeracy skills are associated with better health knowledge, health behaviors, and clinical outcomes in adults; and, low adult health literacy costs the United States between $106 and $236 billion annually (Kutner, Greenberg, Jin, Paulsen, & White, 2006; Vernon, Trujillo, Rosenbaum, & DeBuono, 2007). Literature regarding better outcomes related to high health literacy in pediatric populations is now also beginning to surface, but more research is needed in this area (Cheng, Dreyer, & Jenkins, 2009; Sanders, Federico, Klass, Abrams, & Dreyer, 2009). Due to the scarcity of literature specifically regarding health literacy in adolescents with chronic illness, this integrative review will focus on all adolescents, and not just those with chronic illness. Therefore, while the ultimate goal of this integrative review is to inform an overall program of Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Health Literacy in Adolescents: An Integrative Review
E. L. Perry
work investigating the health literacy of adolescents with chronic illness, the specific purpose of this article is to review the current literature to determine the state of the science of health literacy instruments and interventions for use in adolescents. METHODS Inclusion and exclusion criteria
For the purposes of this search, the following inclusion criteria were used: (a) the mean age of participants falls within the World Health Organization’s (WHO) definition of adolescents (10–19 years of age; WHO, 2013), (b) the study is published in English, and (c) the study involves either the development or validation of a health literacy instrument for adolescents or the evaluation of a health literacy intervention in adolescents. Both instruments and interventions were included in this comprehensive literature review because of the impact of one upon the other as well as the scarcity of literature on both subject matters when discussed alone. Also for the purposes of this study, instruments or interventions relating to general literacy or mental health literacy were excluded. Search strategies
The search was performed using the integrative review method. The integrated review method was chosen because it “is an approach that allows for the inclusion of diverse methodologies (i.e., experimental and nonexperimental research) and has the potential to play a greater role in evidence-based practice for nursing” (Whittemore & Knafl, 2005, p. 546). The integrative search was conducted using Academic Search Complete and PubMed databases. Search terms used were “health literacy” and “adolescents” not “mental health literacy.” Searches were limited to articles available in full-text, in English, and with human participants. With these search terms and filters, 205 articles were retrieved from PubMed and 47 from Academic Search Complete. After reading titles and abstracts only, PubMed results were narrowed down to 40 articles and Academic Search Complete results were narrowed down to 10 articles. Ancestry searches were also completed and yielded an additional 19 articles for review. Please see Figure 1 for the flow of information through the different phases of the integrative review as well as the final outcome for the number of articles used for analysis. Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
RESULTS
After all inclusion and exclusion criteria were applied, 10 studies were selected for the final table for analysis. The total number of participants in all 10 studies (intervention studies and instrument studies combined) was 3,391. Five studies in the table describe health literacy instrument development and validation (n = 3010) and five studies describe health literacy interventions (n = 381). Please see Table 1 (instruments) and Table 2 (interventions). Of note, studies with participants that were younger than 10 years or older than 19 years were included because the inclusion criteria state that the mean age of each sample must fall within the WHO guidelines for the age of adolescents (10– 19), even if some of the actual participants do not fall within the range. Thus, across all studies, ages ranged from 6 to 22 years. Results: Instruments
Five studies described health literacy instruments in adolescents. The total sample size of participants from all five studies combined was N = 3 010. Sample sizes for individual articles ranged from n = 50 (Chisolm & Buchanan, 2007) to n = 1,533 (Davis et al., 2006). The youngest participants were 9 years of age (Schmidt et al., 2010) and the oldest participants were 19 years of age (Davis et al., 2006). Instrument development and validation took place in settings across the world, including the United States, Taiwan, Germany, and Canada. Instrument development occurred in both schools and clinics. There have been several health literacy instruments developed and validated for adolescents. Two articles described the validation in adolescents of instruments previously validated in adults (Chang et al., 2012; Chisolm & Buchanan, 2007), two articles described the development and early validation of health literacy instruments specific to adolescents (Schmidt et al., 2010; Wu et al., 2010), and one article discussed the final reliability and validity testing of a health literacy instrument developed specifically for adolescents. Average reported administration times for health literacy instruments ranged from 2–3 min (Davis et al., 2006) to 12.9 min (Chisolm & Buchanan, 2007). Several studies did not report administration times (Schmidt et al., 2010; Wu et al., 2010). Four out of five instruments showed good internal consistency with Cronbach’s alpha, ranging from α = .57 (Schmidt et al., 2010) to α = .94 (Davis et al., 211
Health Literacy in Adolescents: An Integrative Review
E. L. Perry
Number of records identified through database searching (PubMed and Academic Search Complete)
Number of additional records identified through other sources
255
19
Number of records screened
Number of records excluded
274
204 Reasons for Exclusion (# of articles):
Number of full-text articles assessed for eligibility
1. Focus on parental health literacy (9) 2. No intervention or instrument described (25) 3. Description of theory or model (6) 4. Description of online health information use (4) 5. Systematic review (2) 6. Age exclusion (2) 7. Description of curriculum design/program with no research (4) 8. Duplicates (8)
Number of full-text articles excluded
70
60
Number of studies included in integrated review 10 Figure 1 Flow of Information through the Different Phases of the Integrated Review.
2006). Construct validity varied throughout studies: two studies were only in initial development and construct validity testing had not yet been performed (Schmidt et al., 2010; Wu et al., 2010). Of particular note, construct validity within the Test of Functional Health Literacy for Adults (TOFHLA) was conflicting, as construct validity for the TOFHLA-R (Reading) portion was significant but, construct validity for the TOFHLA-N (Numeracy) portion was not (Chisolm & Buchanan, 2007). Thus, the TOFHLA as a comprehensive instrument was not deemed valid and reliable for assessing adolescent health literacy. Therefore, among the instruments in this integrative review, the only reliable and valid health literacy instrument for adolescents in the literature are the Rapid Estimate of Adolescent Literacy in Medicine (REALM-teen; English) and the Chinese version of the short-form Test of Functional Health Literacy in Adults (C-s-TOFLAd) (Chinese). Results: Interventions
Studies describing and evaluating health literacy interventions yielded far fewer subjects (N = 381) 212
than studies describing and evaluating health literacy instruments. Ages ranged from 6 (Robinson et al., 2008) to 22 years (Hess & Straub, 2011). One intervention involved adolescents with special healthcare needs and two studies focused on children from low-income households (Diamond, Saintonge, August, & Azrack, 2011; Hess & Straub, 2011; Robinson et al., 2008). All other studies focused upon nonspecific adolescent populations within the school system. Interventions took place in the United States, Germany, and Canada. It is very important to note that all of the interventions reported in the literature review took place within a school setting; therefore, there are no interventions described in the hospital or clinical setting. The students that were aged 22 years and in a school setting were those students with special healthcare needs. Two articles describing and evaluating health literacy interventions were qualitative studies (Begoray et al., 2009; Hess & Straub, 2011); two were pretest/posttest design (Diamond et al., 2011; Robinson et al., 2008) and one was a randomized controlled trial (Steckelberg et al., 2009). Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Davis and colleagues (2006)
Chisolm and Buchanan (2007)
To validate the Rapid Estimate of Adolescent Literacy in Medicine REALM-Teen) test
• N = 1,533 • Ages: 10–19 years • Participants were from 5 middle schools, 3 high schools, 1 pediatric clinic, and 2 summer programs
REALM-Teen
TOFHLA
Set of short scales created to measure different domains of Nubeam’s health literacy framework
• N = 852 • Ages: 9–13 years (M = 10.4 years) • 19 different schools in Western Pomerania, Germany • N = 50 • Ages: 13–17 years (M = 14.7 years)
To describe a set of short scales to measure health literacy domains in children and evaluate the associations among the domains To validate the use of the TOFHLA, in teens
Schmidt and colleagues (2010)
Measured skills to understand and evaluate health literacy
• N = 275 • 10th grade • 3 schools in Vancouver, Canada
The development and the early-stage validation of a health literacy tool for high school students
Wu and colleagues (2010)
Chinese short-form Test of Functional Literacy in Adults (c-s- TOFLAd)
• N = 300 • Ages: 16–17 years • 4 high schools in Taiwan
To develop and evaluate the psychometric properties of the Chinese version of short-form Test of Functional Health Literacy in Adults (TOFHLA)
Chang, Hsieh, and Liu (2012)
Instrument evaluated
Research purpose
Author(s)
Population/setting
Table 1. Studies Describing Health Literacy Instruments (Presented in Descending Chronological Order) Results
Average administration time: 2–3 min (max = 5 min) Excellent internal consistency (Cronbach’s Alpha = .94) Strong test–retest reliability (r = .98) High criterion validity (correlation with the Wide Range Achievement Test–Revised, r = .83 and Slosson Oral Reading Test–Revised, r = .93) • REALM-Teen is a brief and reliable instrument for assessing adolescent literacy. • • • •
• Average administration time: 10.9 min (range = 7.9–15.3 min) • C-s-TOFLAd had good internal consistency, reliability, and excellent test–retest reliability. • Contrary to the original version of the TOFHLA, the 36-item, one-factor model for the TOFHLA was the best-fit model. • The c-s-TOFLAd is a suitable instrument to assess health literacy levels in Chinese adolescents • Initial empirical evidence only. • Self-reported health literacy may not be a valid measure of the construct. • Health literacy constructs are different from constructs of general literacy. • Health literacy scores are likely influenced by a combination of intrapersonal, interpersonal, and environmental variables. • There is a need to identify the relationships between general literacy and health literacy within and across the domains of prose, text, and numeracy. • Moderate to satisfactory internal consistency and scalability with Cronbach’s alpha and item response theory. • Scales target a wide range of health literacy domains (including health knowledge, attitudes, communication, and self-efficacy). • Targeting only one domain of health literacy may have only limited effects on health behaviors. • Average administration time: 12.9 min (range = 8.9–17.3 min) • No significant barriers noted. • Supports the use of the TOFHLA-R (Reading) in adolescents. • Additional research needed to evaluate TOFHLA-N (Numeracy) in adolescents as construct validity was not significant.
E. L. Perry Health Literacy in Adolescents: An Integrative Review
213
214
Study purpose
Steckelberg, Hulfenhaus, Kasper, and Muhlhauser (2009) Robinson, Calmes, and Bazargan (2008)
Begoray, Wharf-Higgins, and MacDonald (2009)
• •
To determine if improving literacy while simultaneously conducting asthma education can increase asthma-related health behavior in children and adolescents •
•
• • • •
N = 37 (intervention) N = 218 (control) Ages: 16–18 years 2 classes of secondary students in Germany N = 110 In impoverished and medically underserved area of Los Angeles County Ages: 57% between 6–10 43% between 11–14 77% live with parents; 23% live with relatives or foster parents
• Saturday school format for 3 hr over 6 months–1 year • Included reading curriculum along with Open Airways Program (6 week module)
Ebm@school
Building Wellness™ • N = 12–64 (longitudinal study over 5 years) • Low-income youth from grades 3–8 • 3 schools in New York, NY, USA and one in Los Angeles, CA, USA Health component of • N = 33 Planning 10 curriculum • Ages: 14 and 15 years Single course taught by • Canada one teacher • 4 health classes in British Columbia, Canada
A pilot school-based education intervention to improve health literacy in adolescents and young adults with special healthcare needs
• N = 137 • Special education students • Ages: 14–22 years (M = 16.3 years) • Enrolled in Grades 9–12 • Reading ability from 5th–8th grade
• Qualitative design • Outside sources of health information (i.e., friends, family, coaches, doctors, and the media) are most frequent sources of health information for adolescents. • Educators need to be trained in health education, and some topics should be covered by health experts. • Adolescents desire active learning strategies. • The media plays a large role in adolescent health education. • Implementation using repetitive health information disenchanted students. • Planning 10 health curriculum has much work to do in advancing health literacy. • Students in intervention achieved higher mean person parameters compared with controls (p < .01) indicating enhancement of critical health competencies. • Teaching critical health literacy to secondary school students is feasible. • Randomized controlled trials are needed to confirm effectiveness. • During intervention: a) Emergency Department (ED) admissions decreased by 33% b) Hospitalizations decreased by 22% • Children in intervention displayed internal mastery and control over their asthma. • Those whose literacy improved were less likely to return to ED (Odds Ratio = 0.34; p < .001). • Literacy improvement not directly related to ED visits or hospitalization but indirectly related by increasing self-efficacy. • Increasing general literacy in conjunction with specific asthma education has a positive impact on asthma-related outcomes.
• Qualitative analysis • Three major themes: perceived relevance of the curriculum, readability, and degree of interest and completeness. • Deemed relevant by all students and educators. • All students stated curriculum provided information they did not receive elsewhere. • Reading level high for some students. • Teachers reported easy use. • Potential model to improve health literacy and independence in adolescents with special healthcare needs. • Increase in knowledge scores from pre- to post-tests. • Building Wellness™ should be considered for use with low-income youth. • It is possible to create a long-term health literacy program that engages youth across many age levels. • More longitudinal data will be collected to evaluate specific health outcomes.
Intervention described Results
Population/setting
To develop and pilot-test a curriculum of critical health literacy for secondary school students
To examine how the health component to a new curriculum contributes to health literacy and how context influences health education.
To evaluate a pilot school-based health intervention designed to equip adolescents and young adults (A/YA) who have special healthcare needs with important health literacy, self-advocacy, and self-determination skills Diamond, Saintonge, Pilot program to evaluate a August, and health literacy program, Azrack (2011) Building Wellness™, in schools
Hess and Straub (2011)
Author(s)
Table 2. Studies Describing Health Literacy Interventions (Presented in Descending Chronological Order)
Health Literacy in Adolescents: An Integrative Review E. L. Perry
Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
E. L. Perry
Outcomes of two studies showed that it is, indeed, feasible to improve health literacy among adolescents with specific health literacy interventions in schools (Diamond et al., 2011; Steckelberg et al., 2009). One qualitative study specifically targeted adolescents with special healthcare needs and, while positive feedback was received regarding the intervention with this population, the authors contended that this program could also potentially be used with adolescents without special healthcare needs (Hess & Straub, 2011). On the contrary, the other qualitative study showed themes of dissatisfaction and a need for curriculum change from the adolescents involved in the program. Thus, this intervention is not recommended for any adolescent population (Begoray et al., 2009). One of the pretest/posttest intervention studies is unique and is worthy of discussion for its innovative design. This intervention study increased general literacy in conjunction with health education to improve overall health literacy of the population (Robinson et al., 2008). This innovative combination showed efficacy in producing better health outcomes in children and adolescents with asthma, including fewer emergency room visits and hospitalizations (Robinson et al., 2008). The results of this study lead this author to believe that this type of health literacy intervention, one that combines general literacy and health education, is worth further exploration and evaluation. DISCUSSION Summary of overall findings
Overall findings of this integrative review show that there is a scarcity of literature focusing on both health literacy instruments and interventions in adolescents. The lack of consistency in study designs and study samples makes it difficult to draw specific conclusions from the literature; however, several general conclusions can be made. Only the REALMteen shows high validity and reliability in English (Davis et al., 2006). It is imperative to have valid and reliable instruments to properly assess the efficacy and effectiveness of interventions on a phenomenon. Without these valid and reliable instruments, reported results from intervention studies are questionable. Likewise, most interventions were only in the exploratory stage, with only two studies showing significant outcomes. Therefore, very little remains known regarding both health literacy instruments and interventions in adolescents. A few Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Health Literacy in Adolescents: An Integrative Review
points were noted, however, regarding the literature that was found throughout this process. These are discussed below. Published studies without evaluation
Throughout the process of this integrative review, several articles were found that described health literacy curriculum interventions that did not include any evaluation of the proposed program (Brey, Clark, & Wantz, 2007, 2008). This provides an opportunity for more research in this field as these curriculum design proposals should be systematically evaluated for use in children and adolescents to provide a better understanding of the effectiveness of these programs. If these interventions are adequately evaluated, perhaps they hold the key to significantly improving health literacy in adolescents within the school setting. Studies evaluating the health literacy of adolescents using nonvalidated instruments
While conducting this integrative review, it appeared at first glance that there was an immense amount of literature on this topic. This, however, was quite deceptive. Most of the literature that exists on health literacy in adolescents is descriptive research discussing the current state of health literacy in a specific adolescent population. While this type of research is most certainly imperative, it became obvious after reviewing the specific literature on validated health literacy instruments that the majority of these descriptive studies used health literacy instruments that have not been validated for use in adolescents. These findings, therefore, should be carefully scrutinized. One study included in this integrative review had a unique issue of validity that should be discussed. This study evaluated the translation of the s-TOFHLA (short form of the TOFHLA) into Chinese for use in the adolescent Taiwanese population (Chang et al., 2012). The s-TOFHLA has not been deemed reliable and/or valid in the literature for use in English-speaking adolescents, thus, the validity of a translated version of this instrument should be questioned. Strengths and weaknesses
First, there were several strengths of the studies that should be noted. The evaluation of health literacy instruments and interventions is a relatively new 215
Health Literacy in Adolescents: An Integrative Review
area of research. Therefore, any researcher who is willing to attempt a study in this field should be commended. Also, on a positive note, one of the instrument validation studies had a very large sample size (Davis et al., 2006); and the majority of the others also had moderate sample sizes suggesting that adequate sample sizes can be obtained to validate more health literacy instruments for adolescents. Both instrument and intervention studies took place in a multitude of settings across the world, and many different age groups were evaluated. Thus, findings are more generalizable than if the research solely took place within one country or among one age group. Finally, while the qualitative studies are only exploratory in nature, they do provide insight into further development of both health literacy instruments and interventions for the future. The weaknesses of the studies must also be discussed. To begin, there was only one study that was a randomized controlled trial with the remainder of the studies being correlational, quasi-experimental, or qualitative in nature. Also, most instrument development and validation studies achieved moderate sample sizes, at best; and, most intervention studies had relatively small sample sizes. Therefore, most results within this integrative review are significantly underpowered. Next, 5 out of 10 studies described exploratory and/or qualitative research. While this research is important to this field of study, it is also difficult to extrapolate these results into practice because the data are mostly descriptive in nature and more research must be performed to provide recommendations for practice. Lastly, the designs, settings, and subjects of the studies were so varied that it was difficult to synthesize the results. Similarly, designed studies would help clinicians and researchers alike to synthesize the results for better utilization in both clinical and research practice. IMPLICATIONS FOR CLINICAL PRACTICE AND RESEARCH
First, it is imperative that clinicians are aware of health literacy instruments that have been evaluated in adolescents. Knowledge of developed and validated health literacy instruments will provide a basis for more valid descriptive evaluation of the current state of health literacy in adolescent populations. As seen throughout the literature, many studies are reporting results of studies using health literacy instruments that have not been deemed valid or reliable in this population. This is quite con216
E. L. Perry
cerning, and it is imperative that future studies utilize valid instruments for results to be validated for adolescents. Likewise, it is vital for clinicians to be knowledgeable about health literacy interventions in this population. Clinicians must know what health literacy interventions are being implemented in school systems in their area to have a basis from which to develop their own health literacy interventions. Students described the receipt of duplicate health information as boring and frustrating; thus, the same types of interventions do not need to be performed in schools and clinics simultaneously (Begoray et al., 2009). Likewise, other successes and failures within the implementation of health literacy interventions are described in the literature. Much can be learned from those that have already attempted these types of interventions regardless of the fact that schools and clinics have very different resources and settings. One example of inferring from interventions already in the literature regards the delivery of health literacy interventions. All interventions in the literature were performed in schools yet, students stated that they used outside sources of health information (media, friends, parents, coaches, and doctors) more than they use health information learned in schools (Begoray et al., 2009). Therefore, there is a noteworthy disconnect between preferred learning methods versus education initiatives for health literacy both in the United States and worldwide. From this literature, it is clear that we have much to learn regarding both health literacy instruments and interventions to evaluate and improve the health literacy of adolescents. Gaps in the literature and research implications
There are significant gaps in the literature regarding health literacy instruments and interventions in both adolescents with chronic illness and adolescents without chronic illness. The overall consensus of the studies is that more research is needed regarding both health literacy instruments and interventions in adolescents. Most instrument studies were in preliminary phases of development; thus, more studies in later stages are timely to validly utilize these instruments. It is also clear that more health literacy interventions utilizing experimental and longitudinal designs are vital. Because only one randomized controlled trial and one longitudinal study were found in the literature, it would seem imperative that both types of research be considered as next Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Health Literacy in Adolescents: An Integrative Review
E. L. Perry
steps in evaluating interventions. These types of studies (or a combination thereof) should also be conducted both within the school systems and within the healthcare systems. LIMITATIONS OF THIS INTEGRATIVE REVIEW
Several limitations should be noted of this integrative review. First, it only focused on health literacy instruments and interventions in adolescents. Throughout the integrated review process, it became evident that much descriptive research of health literacy in adolescent populations of various backgrounds exists. These articles typically described the results of health literacy surveys among specific adolescent populations. It is important to know the current “state” of health literacy in specific adolescent populations to fully understand the concept of health literacy of adolescents. Likewise, it would be beneficial to also describe the literature regarding health literacy of parents of adolescents. This type of literature was found numerous times throughout the integrative review and could add an entirely different dimension to this review. Another aspect of health literacy that was not described in this review is the concept of mental health literacy. While a different concept altogether, it would be interesting to describe these parallel terms within the context of one integrative review. While search terms were refined for this particular review for the sake of feasibility, a more exhaustive search may have ensued if further search terms were used such as “health knowledge” and “health education.” These terms may have yielded more results in the health literacy domain that were missed due to only searching for “health literacy” and not using terms that are potentially synonymous with the concept.
How might this information affect nursing practice?
It is imperative that nurses who care for adolescents are aware of the current state of health literacy. This includes knowledge of how to both assess and intervene with health literacy. To properly assess the current state of health literacy in their patients, nurses must be aware of valid and reliable instruments. Such instruments are essential in evaluating the efficacy and effectiveness of interventions. Initiatives to improve health literacy
Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
in adolescents must begin with knowledge of successful and unsuccessful initiatives that are already in the literature. This integrative review helps to both review valid and reliable instruments and to provide background information regarding interventions already attempted. A meager 12% of adults in the United States have proficient health literacy skills. Therefore, it is prudent to improve health literacy for the next generation (Kutner et al., 2006). The task of improving health literacy amongst millions of adolescents is daunting; but, ultimately, improving health literacy in adolescents is imperative for achieving better health outcomes.
References Begoray, D. L., Wharf-Higgins, J., & MacDonald, M. (2009). High school health curriculum and health literacy: Canadian student voices. Global Health Promotion, 16, 35–42. doi:10.1177/1757975909348101 Blum, R. W. (1995). Transition to adult health care: Setting the stage. Journal of Adolescent Health: Official Publication of the Society for Adolescent Medicine, 17, 3–5. doi:10.1016/ 1054-139X(95)00073-2 Brey, R. A., Clark, S. E., & Wantz, M. S. (2007). Enhancing health literacy through accessing health information, products, and services: An exercise for children and adolescents. Journal of School Health, 77, 640–644. doi:10.1111/j.1746-1561.2007.00245.x Brey, R. A., Clark, S. E., & Wantz, M. S. (2008). This is your future: A case study approach to foster health literacy. Journal of School Health, 78, 351–355. doi:10.1111/ j.1746-1561.2008.00313.x Chang, L., Hsieh, P., & Liu, C. (2012). Psychometric evaluation of the Chinese version of short-form test of functional health literacy in adolescents. Journal of Clinical Nursing, 21, 2429–2437. doi:10.1111/ j.1365-2702.2012.04147.x Cheng, T. L., Dreyer, B. P., & Jenkins, R. R. (2009). Introduction: Child health disparities and health literacy. Pediatrics, 124(Suppl. 3), S161–S162. doi:10.1542/peds.2009-1100C Chisolm, D. J., & Buchanan, L. (2007). Measuring adolescent functional health literacy: A pilot validation of the test of functional health literacy in adults. Journal of Adolescent Health: Official Publication of the Society for Adolescent Medicine, 41, 312–314. doi:10.1016/ j.jadohealth.2007.04.015 Davis, T. C., Wolf, M. S., Arnold, C. L., Byrd, R. S., Long, S. W., Springer, T., . . . Bocchini, J. A. (2006). Development and validation of the rapid estimate of adolescent literacy in medicine (REALM-teen): A tool to 217
Health Literacy in Adolescents: An Integrative Review
screen adolescents for below-grade reading in health care settings. Pediatrics, 118, e1707–e1714. doi:10.1542/ peds.2006-1139 Debaun, M. R., & Telfair, J. (2012). Transition and sickle cell disease. Pediatrics, 130, doi:10.1542/peds.2011-3049 Diamond, C., Saintonge, S., August, P., & Azrack, A. (2011). The development of Building Wellness™, a youth health literacy program. Journal of Health Communication, 16(Suppl. 3), 103–118. doi:10.1080/10810730 .2011.604385 Hess, J. S., & Straub, D. M. (2011). Brief report: Preliminary findings from a pilot health care transition education intervention for adolescents and young adults with special health care needs. Journal of Pediatric Psychology, 36, 172–178. doi:10.1093/jpepsy/jsq091 Kutner, M., Greenberg, E., Jin, Y., Paulsen, C., & White, S. (2006). The health literacy of America’s adults: Results from the 2003 National assessment of adult literacy. Washington, DC: National Center for Education Statistics: U.S. Department of Education. National Center for Healthcare Statistics. (2006). Health, United States, 2006 (NCHS publication no. 76–641496). Hyattsville, MD. Retrieved from http://www.cdc.gov/ nchs/data/hus/hus06.pdf Quinn, C. T., Rogers, Z. R., McCavit, T. L., & Buchanan, G. R. (2010). Improved survival of children and adolescents with sickle cell disease. Blood, 115, 3447–3452. doi:10.1182/blood-2009-07-233700 Ratzan, S. C., & Parker, R. M. (2000). Introduction. In C. R. Selden, M. Zorn, S. C. Ratzan, & R. M. Parker (Eds.), National library of medicine current bibliographies in medicine: Health literacy. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services. NLM Pub. No. CBM 2000-1 ed. Robinson, L. D., Jr., Calmes, D. P., & Bazargan, M. (2008). The impact of literacy enhancement on asthma-related
218
E. L. Perry
outcomes among underserved children. Journal of the National Medical Association, 100, 892–896. Sanders, L. M., Federico, S., Klass, P., Abrams, M. A., & Dreyer, B. (2009). Literacy and child health: A systematic review. Archives of Pediatrics & Adolescent Medicine, 163, 131–140. doi:10.1001/archpediatrics .2008.539 Schmidt, C. O., Fahland, R. A., Franze, M., Splieth, C., Thyrian, J. R., Plachta-Danielzik, S., . . . Kohlmann, T. (2010). Health-related behaviour, knowledge, attitudes, communication and social status in school children in eastern Germany. Health Education Research, 25, 542–551. doi:10.1093/her/cyq011, 10.1093/her/ cyq011 Steckelberg, A., Hulfenhaus, C., Kasper, J., & Muhlhauser, I. (2009). Ebm@school—A curriculum of critical health literacy for secondary school students: Results of a pilot study. International Journal of Public Health, 54, 158–165. doi:10.1007/s00038-008-7033-1 Vernon, J. A., Trujillo, A., Rosenbaum, S., & DeBuono, B. (2007). Low health literacy: Implications for national health policy. Retrieved October 20, 2012, from http://sphhs.gwu.edu/departments/healthpolicy/ CHPR/downloads/LowHealthLiteracyReport10_4_07 .pdf Whittemore, R., & Knafl, K. (2005). The integrative review: Updated methodoloogy. Journal of Advanced Nursing, 52, 546–553. World Health Organization. (2013). Adolescent health. Retrieved from http://www.who.int/topics/ adolescent_health/en/ Wu, A. D., Begoray, D. L., Macdonald, M., Wharf-Higgins, J., Frankish, J., Kwan, B., . . . Rootman, I. (2010). Developing and evaluating a relevant and feasible instrument for measuring health literacy of Canadian high school students. Health Promotion International, 25, 444–452. doi:10.1093/heapro/daq032
Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Journal for Specialists in Pediatric Nursing
REVIEW ARTICLE
Health literacy in adolescents: an integrative review Elizabeth L. Perry Elizabeth L. Perry, MSN, RN, is an Assistant Instructor and Nursing Doctoral Candidate, The University of Texas at Austin, Austin, Texas, USA
Search terms Adolescent, child, health education, health knowledge, health literacy. Author contact [email protected], with a copy to the Editor: [email protected] Acknowledgement Thank you to Dr. Sharon Brown for her unwavering patience and guidance in the development of this integrative review and manuscript.
Abstract Purpose. To determine the state of the science of health literacy instruments and interventions for use in adolescents. Conclusions. There is a scarcity of literature regarding health literacy instruments and interventions for adolescents. Ten studies were included in the final table for analysis. One instrument shows high validity and reliability in English. Most interventions are exploratory, with two studies showing significant outcomes. Practice Implications. More research is needed to establish the appropriate evaluation of and effective interventions for health literacy in adolescents.
Disclosure: The author reports no actual or potential conflicts of interest. No external or intramural funding was received. First Received August 1, 2013; Final revision received January 22, 2014; Accepted for publication January 27, 2014. doi: 10.1111/jspn.12072
Approximately five million children in the United States are now living with a chronic illness such as asthma, type 1 and type 2 diabetes, cystic fibrosis, obesity, and sickle cell disease (National Center for Healthcare Statistics, 2006). It has been estimated that 90% of children with a chronic illness living in the United States will now live until at least the age of 20; thus, most of these children will be transferred from the care of a pediatrician to an adult health provider (Blum, 1995). Several recent studies show that the transfer of care from pediatric services to adult services in patients with chronic illness results in increased morbidity and mortality for these patients (Debaun & Telfair, 2012; Quinn, Rogers, McCavit, & Buchanan, 2010). While this problem is clearly identified in the literature, more research is needed to help identify facilitators and barriers to a successful transition of patients with chronic illness from pediatric care to adult care. If patients with chronic illness have higher health literacy as adolescents, they will potentially have better outcomes during and after transition. For this 210
article, health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan & Parker, 2000, p. vi). Higher health literacy and numeracy skills are associated with better health knowledge, health behaviors, and clinical outcomes in adults; and, low adult health literacy costs the United States between $106 and $236 billion annually (Kutner, Greenberg, Jin, Paulsen, & White, 2006; Vernon, Trujillo, Rosenbaum, & DeBuono, 2007). Literature regarding better outcomes related to high health literacy in pediatric populations is now also beginning to surface, but more research is needed in this area (Cheng, Dreyer, & Jenkins, 2009; Sanders, Federico, Klass, Abrams, & Dreyer, 2009). Due to the scarcity of literature specifically regarding health literacy in adolescents with chronic illness, this integrative review will focus on all adolescents, and not just those with chronic illness. Therefore, while the ultimate goal of this integrative review is to inform an overall program of Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Health Literacy in Adolescents: An Integrative Review
E. L. Perry
work investigating the health literacy of adolescents with chronic illness, the specific purpose of this article is to review the current literature to determine the state of the science of health literacy instruments and interventions for use in adolescents. METHODS Inclusion and exclusion criteria
For the purposes of this search, the following inclusion criteria were used: (a) the mean age of participants falls within the World Health Organization’s (WHO) definition of adolescents (10–19 years of age; WHO, 2013), (b) the study is published in English, and (c) the study involves either the development or validation of a health literacy instrument for adolescents or the evaluation of a health literacy intervention in adolescents. Both instruments and interventions were included in this comprehensive literature review because of the impact of one upon the other as well as the scarcity of literature on both subject matters when discussed alone. Also for the purposes of this study, instruments or interventions relating to general literacy or mental health literacy were excluded. Search strategies
The search was performed using the integrative review method. The integrated review method was chosen because it “is an approach that allows for the inclusion of diverse methodologies (i.e., experimental and nonexperimental research) and has the potential to play a greater role in evidence-based practice for nursing” (Whittemore & Knafl, 2005, p. 546). The integrative search was conducted using Academic Search Complete and PubMed databases. Search terms used were “health literacy” and “adolescents” not “mental health literacy.” Searches were limited to articles available in full-text, in English, and with human participants. With these search terms and filters, 205 articles were retrieved from PubMed and 47 from Academic Search Complete. After reading titles and abstracts only, PubMed results were narrowed down to 40 articles and Academic Search Complete results were narrowed down to 10 articles. Ancestry searches were also completed and yielded an additional 19 articles for review. Please see Figure 1 for the flow of information through the different phases of the integrative review as well as the final outcome for the number of articles used for analysis. Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
RESULTS
After all inclusion and exclusion criteria were applied, 10 studies were selected for the final table for analysis. The total number of participants in all 10 studies (intervention studies and instrument studies combined) was 3,391. Five studies in the table describe health literacy instrument development and validation (n = 3010) and five studies describe health literacy interventions (n = 381). Please see Table 1 (instruments) and Table 2 (interventions). Of note, studies with participants that were younger than 10 years or older than 19 years were included because the inclusion criteria state that the mean age of each sample must fall within the WHO guidelines for the age of adolescents (10– 19), even if some of the actual participants do not fall within the range. Thus, across all studies, ages ranged from 6 to 22 years. Results: Instruments
Five studies described health literacy instruments in adolescents. The total sample size of participants from all five studies combined was N = 3 010. Sample sizes for individual articles ranged from n = 50 (Chisolm & Buchanan, 2007) to n = 1,533 (Davis et al., 2006). The youngest participants were 9 years of age (Schmidt et al., 2010) and the oldest participants were 19 years of age (Davis et al., 2006). Instrument development and validation took place in settings across the world, including the United States, Taiwan, Germany, and Canada. Instrument development occurred in both schools and clinics. There have been several health literacy instruments developed and validated for adolescents. Two articles described the validation in adolescents of instruments previously validated in adults (Chang et al., 2012; Chisolm & Buchanan, 2007), two articles described the development and early validation of health literacy instruments specific to adolescents (Schmidt et al., 2010; Wu et al., 2010), and one article discussed the final reliability and validity testing of a health literacy instrument developed specifically for adolescents. Average reported administration times for health literacy instruments ranged from 2–3 min (Davis et al., 2006) to 12.9 min (Chisolm & Buchanan, 2007). Several studies did not report administration times (Schmidt et al., 2010; Wu et al., 2010). Four out of five instruments showed good internal consistency with Cronbach’s alpha, ranging from α = .57 (Schmidt et al., 2010) to α = .94 (Davis et al., 211
Health Literacy in Adolescents: An Integrative Review
E. L. Perry
Number of records identified through database searching (PubMed and Academic Search Complete)
Number of additional records identified through other sources
255
19
Number of records screened
Number of records excluded
274
204 Reasons for Exclusion (# of articles):
Number of full-text articles assessed for eligibility
1. Focus on parental health literacy (9) 2. No intervention or instrument described (25) 3. Description of theory or model (6) 4. Description of online health information use (4) 5. Systematic review (2) 6. Age exclusion (2) 7. Description of curriculum design/program with no research (4) 8. Duplicates (8)
Number of full-text articles excluded
70
60
Number of studies included in integrated review 10 Figure 1 Flow of Information through the Different Phases of the Integrated Review.
2006). Construct validity varied throughout studies: two studies were only in initial development and construct validity testing had not yet been performed (Schmidt et al., 2010; Wu et al., 2010). Of particular note, construct validity within the Test of Functional Health Literacy for Adults (TOFHLA) was conflicting, as construct validity for the TOFHLA-R (Reading) portion was significant but, construct validity for the TOFHLA-N (Numeracy) portion was not (Chisolm & Buchanan, 2007). Thus, the TOFHLA as a comprehensive instrument was not deemed valid and reliable for assessing adolescent health literacy. Therefore, among the instruments in this integrative review, the only reliable and valid health literacy instrument for adolescents in the literature are the Rapid Estimate of Adolescent Literacy in Medicine (REALM-teen; English) and the Chinese version of the short-form Test of Functional Health Literacy in Adults (C-s-TOFLAd) (Chinese). Results: Interventions
Studies describing and evaluating health literacy interventions yielded far fewer subjects (N = 381) 212
than studies describing and evaluating health literacy instruments. Ages ranged from 6 (Robinson et al., 2008) to 22 years (Hess & Straub, 2011). One intervention involved adolescents with special healthcare needs and two studies focused on children from low-income households (Diamond, Saintonge, August, & Azrack, 2011; Hess & Straub, 2011; Robinson et al., 2008). All other studies focused upon nonspecific adolescent populations within the school system. Interventions took place in the United States, Germany, and Canada. It is very important to note that all of the interventions reported in the literature review took place within a school setting; therefore, there are no interventions described in the hospital or clinical setting. The students that were aged 22 years and in a school setting were those students with special healthcare needs. Two articles describing and evaluating health literacy interventions were qualitative studies (Begoray et al., 2009; Hess & Straub, 2011); two were pretest/posttest design (Diamond et al., 2011; Robinson et al., 2008) and one was a randomized controlled trial (Steckelberg et al., 2009). Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Davis and colleagues (2006)
Chisolm and Buchanan (2007)
To validate the Rapid Estimate of Adolescent Literacy in Medicine REALM-Teen) test
• N = 1,533 • Ages: 10–19 years • Participants were from 5 middle schools, 3 high schools, 1 pediatric clinic, and 2 summer programs
REALM-Teen
TOFHLA
Set of short scales created to measure different domains of Nubeam’s health literacy framework
• N = 852 • Ages: 9–13 years (M = 10.4 years) • 19 different schools in Western Pomerania, Germany • N = 50 • Ages: 13–17 years (M = 14.7 years)
To describe a set of short scales to measure health literacy domains in children and evaluate the associations among the domains To validate the use of the TOFHLA, in teens
Schmidt and colleagues (2010)
Measured skills to understand and evaluate health literacy
• N = 275 • 10th grade • 3 schools in Vancouver, Canada
The development and the early-stage validation of a health literacy tool for high school students
Wu and colleagues (2010)
Chinese short-form Test of Functional Literacy in Adults (c-s- TOFLAd)
• N = 300 • Ages: 16–17 years • 4 high schools in Taiwan
To develop and evaluate the psychometric properties of the Chinese version of short-form Test of Functional Health Literacy in Adults (TOFHLA)
Chang, Hsieh, and Liu (2012)
Instrument evaluated
Research purpose
Author(s)
Population/setting
Table 1. Studies Describing Health Literacy Instruments (Presented in Descending Chronological Order) Results
Average administration time: 2–3 min (max = 5 min) Excellent internal consistency (Cronbach’s Alpha = .94) Strong test–retest reliability (r = .98) High criterion validity (correlation with the Wide Range Achievement Test–Revised, r = .83 and Slosson Oral Reading Test–Revised, r = .93) • REALM-Teen is a brief and reliable instrument for assessing adolescent literacy. • • • •
• Average administration time: 10.9 min (range = 7.9–15.3 min) • C-s-TOFLAd had good internal consistency, reliability, and excellent test–retest reliability. • Contrary to the original version of the TOFHLA, the 36-item, one-factor model for the TOFHLA was the best-fit model. • The c-s-TOFLAd is a suitable instrument to assess health literacy levels in Chinese adolescents • Initial empirical evidence only. • Self-reported health literacy may not be a valid measure of the construct. • Health literacy constructs are different from constructs of general literacy. • Health literacy scores are likely influenced by a combination of intrapersonal, interpersonal, and environmental variables. • There is a need to identify the relationships between general literacy and health literacy within and across the domains of prose, text, and numeracy. • Moderate to satisfactory internal consistency and scalability with Cronbach’s alpha and item response theory. • Scales target a wide range of health literacy domains (including health knowledge, attitudes, communication, and self-efficacy). • Targeting only one domain of health literacy may have only limited effects on health behaviors. • Average administration time: 12.9 min (range = 8.9–17.3 min) • No significant barriers noted. • Supports the use of the TOFHLA-R (Reading) in adolescents. • Additional research needed to evaluate TOFHLA-N (Numeracy) in adolescents as construct validity was not significant.
E. L. Perry Health Literacy in Adolescents: An Integrative Review
213
214
Study purpose
Steckelberg, Hulfenhaus, Kasper, and Muhlhauser (2009) Robinson, Calmes, and Bazargan (2008)
Begoray, Wharf-Higgins, and MacDonald (2009)
• •
To determine if improving literacy while simultaneously conducting asthma education can increase asthma-related health behavior in children and adolescents •
•
• • • •
N = 37 (intervention) N = 218 (control) Ages: 16–18 years 2 classes of secondary students in Germany N = 110 In impoverished and medically underserved area of Los Angeles County Ages: 57% between 6–10 43% between 11–14 77% live with parents; 23% live with relatives or foster parents
• Saturday school format for 3 hr over 6 months–1 year • Included reading curriculum along with Open Airways Program (6 week module)
Ebm@school
Building Wellness™ • N = 12–64 (longitudinal study over 5 years) • Low-income youth from grades 3–8 • 3 schools in New York, NY, USA and one in Los Angeles, CA, USA Health component of • N = 33 Planning 10 curriculum • Ages: 14 and 15 years Single course taught by • Canada one teacher • 4 health classes in British Columbia, Canada
A pilot school-based education intervention to improve health literacy in adolescents and young adults with special healthcare needs
• N = 137 • Special education students • Ages: 14–22 years (M = 16.3 years) • Enrolled in Grades 9–12 • Reading ability from 5th–8th grade
• Qualitative design • Outside sources of health information (i.e., friends, family, coaches, doctors, and the media) are most frequent sources of health information for adolescents. • Educators need to be trained in health education, and some topics should be covered by health experts. • Adolescents desire active learning strategies. • The media plays a large role in adolescent health education. • Implementation using repetitive health information disenchanted students. • Planning 10 health curriculum has much work to do in advancing health literacy. • Students in intervention achieved higher mean person parameters compared with controls (p < .01) indicating enhancement of critical health competencies. • Teaching critical health literacy to secondary school students is feasible. • Randomized controlled trials are needed to confirm effectiveness. • During intervention: a) Emergency Department (ED) admissions decreased by 33% b) Hospitalizations decreased by 22% • Children in intervention displayed internal mastery and control over their asthma. • Those whose literacy improved were less likely to return to ED (Odds Ratio = 0.34; p < .001). • Literacy improvement not directly related to ED visits or hospitalization but indirectly related by increasing self-efficacy. • Increasing general literacy in conjunction with specific asthma education has a positive impact on asthma-related outcomes.
• Qualitative analysis • Three major themes: perceived relevance of the curriculum, readability, and degree of interest and completeness. • Deemed relevant by all students and educators. • All students stated curriculum provided information they did not receive elsewhere. • Reading level high for some students. • Teachers reported easy use. • Potential model to improve health literacy and independence in adolescents with special healthcare needs. • Increase in knowledge scores from pre- to post-tests. • Building Wellness™ should be considered for use with low-income youth. • It is possible to create a long-term health literacy program that engages youth across many age levels. • More longitudinal data will be collected to evaluate specific health outcomes.
Intervention described Results
Population/setting
To develop and pilot-test a curriculum of critical health literacy for secondary school students
To examine how the health component to a new curriculum contributes to health literacy and how context influences health education.
To evaluate a pilot school-based health intervention designed to equip adolescents and young adults (A/YA) who have special healthcare needs with important health literacy, self-advocacy, and self-determination skills Diamond, Saintonge, Pilot program to evaluate a August, and health literacy program, Azrack (2011) Building Wellness™, in schools
Hess and Straub (2011)
Author(s)
Table 2. Studies Describing Health Literacy Interventions (Presented in Descending Chronological Order)
Health Literacy in Adolescents: An Integrative Review E. L. Perry
Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
E. L. Perry
Outcomes of two studies showed that it is, indeed, feasible to improve health literacy among adolescents with specific health literacy interventions in schools (Diamond et al., 2011; Steckelberg et al., 2009). One qualitative study specifically targeted adolescents with special healthcare needs and, while positive feedback was received regarding the intervention with this population, the authors contended that this program could also potentially be used with adolescents without special healthcare needs (Hess & Straub, 2011). On the contrary, the other qualitative study showed themes of dissatisfaction and a need for curriculum change from the adolescents involved in the program. Thus, this intervention is not recommended for any adolescent population (Begoray et al., 2009). One of the pretest/posttest intervention studies is unique and is worthy of discussion for its innovative design. This intervention study increased general literacy in conjunction with health education to improve overall health literacy of the population (Robinson et al., 2008). This innovative combination showed efficacy in producing better health outcomes in children and adolescents with asthma, including fewer emergency room visits and hospitalizations (Robinson et al., 2008). The results of this study lead this author to believe that this type of health literacy intervention, one that combines general literacy and health education, is worth further exploration and evaluation. DISCUSSION Summary of overall findings
Overall findings of this integrative review show that there is a scarcity of literature focusing on both health literacy instruments and interventions in adolescents. The lack of consistency in study designs and study samples makes it difficult to draw specific conclusions from the literature; however, several general conclusions can be made. Only the REALMteen shows high validity and reliability in English (Davis et al., 2006). It is imperative to have valid and reliable instruments to properly assess the efficacy and effectiveness of interventions on a phenomenon. Without these valid and reliable instruments, reported results from intervention studies are questionable. Likewise, most interventions were only in the exploratory stage, with only two studies showing significant outcomes. Therefore, very little remains known regarding both health literacy instruments and interventions in adolescents. A few Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Health Literacy in Adolescents: An Integrative Review
points were noted, however, regarding the literature that was found throughout this process. These are discussed below. Published studies without evaluation
Throughout the process of this integrative review, several articles were found that described health literacy curriculum interventions that did not include any evaluation of the proposed program (Brey, Clark, & Wantz, 2007, 2008). This provides an opportunity for more research in this field as these curriculum design proposals should be systematically evaluated for use in children and adolescents to provide a better understanding of the effectiveness of these programs. If these interventions are adequately evaluated, perhaps they hold the key to significantly improving health literacy in adolescents within the school setting. Studies evaluating the health literacy of adolescents using nonvalidated instruments
While conducting this integrative review, it appeared at first glance that there was an immense amount of literature on this topic. This, however, was quite deceptive. Most of the literature that exists on health literacy in adolescents is descriptive research discussing the current state of health literacy in a specific adolescent population. While this type of research is most certainly imperative, it became obvious after reviewing the specific literature on validated health literacy instruments that the majority of these descriptive studies used health literacy instruments that have not been validated for use in adolescents. These findings, therefore, should be carefully scrutinized. One study included in this integrative review had a unique issue of validity that should be discussed. This study evaluated the translation of the s-TOFHLA (short form of the TOFHLA) into Chinese for use in the adolescent Taiwanese population (Chang et al., 2012). The s-TOFHLA has not been deemed reliable and/or valid in the literature for use in English-speaking adolescents, thus, the validity of a translated version of this instrument should be questioned. Strengths and weaknesses
First, there were several strengths of the studies that should be noted. The evaluation of health literacy instruments and interventions is a relatively new 215
Health Literacy in Adolescents: An Integrative Review
area of research. Therefore, any researcher who is willing to attempt a study in this field should be commended. Also, on a positive note, one of the instrument validation studies had a very large sample size (Davis et al., 2006); and the majority of the others also had moderate sample sizes suggesting that adequate sample sizes can be obtained to validate more health literacy instruments for adolescents. Both instrument and intervention studies took place in a multitude of settings across the world, and many different age groups were evaluated. Thus, findings are more generalizable than if the research solely took place within one country or among one age group. Finally, while the qualitative studies are only exploratory in nature, they do provide insight into further development of both health literacy instruments and interventions for the future. The weaknesses of the studies must also be discussed. To begin, there was only one study that was a randomized controlled trial with the remainder of the studies being correlational, quasi-experimental, or qualitative in nature. Also, most instrument development and validation studies achieved moderate sample sizes, at best; and, most intervention studies had relatively small sample sizes. Therefore, most results within this integrative review are significantly underpowered. Next, 5 out of 10 studies described exploratory and/or qualitative research. While this research is important to this field of study, it is also difficult to extrapolate these results into practice because the data are mostly descriptive in nature and more research must be performed to provide recommendations for practice. Lastly, the designs, settings, and subjects of the studies were so varied that it was difficult to synthesize the results. Similarly, designed studies would help clinicians and researchers alike to synthesize the results for better utilization in both clinical and research practice. IMPLICATIONS FOR CLINICAL PRACTICE AND RESEARCH
First, it is imperative that clinicians are aware of health literacy instruments that have been evaluated in adolescents. Knowledge of developed and validated health literacy instruments will provide a basis for more valid descriptive evaluation of the current state of health literacy in adolescent populations. As seen throughout the literature, many studies are reporting results of studies using health literacy instruments that have not been deemed valid or reliable in this population. This is quite con216
E. L. Perry
cerning, and it is imperative that future studies utilize valid instruments for results to be validated for adolescents. Likewise, it is vital for clinicians to be knowledgeable about health literacy interventions in this population. Clinicians must know what health literacy interventions are being implemented in school systems in their area to have a basis from which to develop their own health literacy interventions. Students described the receipt of duplicate health information as boring and frustrating; thus, the same types of interventions do not need to be performed in schools and clinics simultaneously (Begoray et al., 2009). Likewise, other successes and failures within the implementation of health literacy interventions are described in the literature. Much can be learned from those that have already attempted these types of interventions regardless of the fact that schools and clinics have very different resources and settings. One example of inferring from interventions already in the literature regards the delivery of health literacy interventions. All interventions in the literature were performed in schools yet, students stated that they used outside sources of health information (media, friends, parents, coaches, and doctors) more than they use health information learned in schools (Begoray et al., 2009). Therefore, there is a noteworthy disconnect between preferred learning methods versus education initiatives for health literacy both in the United States and worldwide. From this literature, it is clear that we have much to learn regarding both health literacy instruments and interventions to evaluate and improve the health literacy of adolescents. Gaps in the literature and research implications
There are significant gaps in the literature regarding health literacy instruments and interventions in both adolescents with chronic illness and adolescents without chronic illness. The overall consensus of the studies is that more research is needed regarding both health literacy instruments and interventions in adolescents. Most instrument studies were in preliminary phases of development; thus, more studies in later stages are timely to validly utilize these instruments. It is also clear that more health literacy interventions utilizing experimental and longitudinal designs are vital. Because only one randomized controlled trial and one longitudinal study were found in the literature, it would seem imperative that both types of research be considered as next Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
Health Literacy in Adolescents: An Integrative Review
E. L. Perry
steps in evaluating interventions. These types of studies (or a combination thereof) should also be conducted both within the school systems and within the healthcare systems. LIMITATIONS OF THIS INTEGRATIVE REVIEW
Several limitations should be noted of this integrative review. First, it only focused on health literacy instruments and interventions in adolescents. Throughout the integrated review process, it became evident that much descriptive research of health literacy in adolescent populations of various backgrounds exists. These articles typically described the results of health literacy surveys among specific adolescent populations. It is important to know the current “state” of health literacy in specific adolescent populations to fully understand the concept of health literacy of adolescents. Likewise, it would be beneficial to also describe the literature regarding health literacy of parents of adolescents. This type of literature was found numerous times throughout the integrative review and could add an entirely different dimension to this review. Another aspect of health literacy that was not described in this review is the concept of mental health literacy. While a different concept altogether, it would be interesting to describe these parallel terms within the context of one integrative review. While search terms were refined for this particular review for the sake of feasibility, a more exhaustive search may have ensued if further search terms were used such as “health knowledge” and “health education.” These terms may have yielded more results in the health literacy domain that were missed due to only searching for “health literacy” and not using terms that are potentially synonymous with the concept.
How might this information affect nursing practice?
It is imperative that nurses who care for adolescents are aware of the current state of health literacy. This includes knowledge of how to both assess and intervene with health literacy. To properly assess the current state of health literacy in their patients, nurses must be aware of valid and reliable instruments. Such instruments are essential in evaluating the efficacy and effectiveness of interventions. Initiatives to improve health literacy
Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
in adolescents must begin with knowledge of successful and unsuccessful initiatives that are already in the literature. This integrative review helps to both review valid and reliable instruments and to provide background information regarding interventions already attempted. A meager 12% of adults in the United States have proficient health literacy skills. Therefore, it is prudent to improve health literacy for the next generation (Kutner et al., 2006). The task of improving health literacy amongst millions of adolescents is daunting; but, ultimately, improving health literacy in adolescents is imperative for achieving better health outcomes.
References Begoray, D. L., Wharf-Higgins, J., & MacDonald, M. (2009). High school health curriculum and health literacy: Canadian student voices. Global Health Promotion, 16, 35–42. doi:10.1177/1757975909348101 Blum, R. W. (1995). Transition to adult health care: Setting the stage. Journal of Adolescent Health: Official Publication of the Society for Adolescent Medicine, 17, 3–5. doi:10.1016/ 1054-139X(95)00073-2 Brey, R. A., Clark, S. E., & Wantz, M. S. (2007). Enhancing health literacy through accessing health information, products, and services: An exercise for children and adolescents. Journal of School Health, 77, 640–644. doi:10.1111/j.1746-1561.2007.00245.x Brey, R. A., Clark, S. E., & Wantz, M. S. (2008). This is your future: A case study approach to foster health literacy. Journal of School Health, 78, 351–355. doi:10.1111/ j.1746-1561.2008.00313.x Chang, L., Hsieh, P., & Liu, C. (2012). Psychometric evaluation of the Chinese version of short-form test of functional health literacy in adolescents. Journal of Clinical Nursing, 21, 2429–2437. doi:10.1111/ j.1365-2702.2012.04147.x Cheng, T. L., Dreyer, B. P., & Jenkins, R. R. (2009). Introduction: Child health disparities and health literacy. Pediatrics, 124(Suppl. 3), S161–S162. doi:10.1542/peds.2009-1100C Chisolm, D. J., & Buchanan, L. (2007). Measuring adolescent functional health literacy: A pilot validation of the test of functional health literacy in adults. Journal of Adolescent Health: Official Publication of the Society for Adolescent Medicine, 41, 312–314. doi:10.1016/ j.jadohealth.2007.04.015 Davis, T. C., Wolf, M. S., Arnold, C. L., Byrd, R. S., Long, S. W., Springer, T., . . . Bocchini, J. A. (2006). Development and validation of the rapid estimate of adolescent literacy in medicine (REALM-teen): A tool to 217
Health Literacy in Adolescents: An Integrative Review
screen adolescents for below-grade reading in health care settings. Pediatrics, 118, e1707–e1714. doi:10.1542/ peds.2006-1139 Debaun, M. R., & Telfair, J. (2012). Transition and sickle cell disease. Pediatrics, 130, doi:10.1542/peds.2011-3049 Diamond, C., Saintonge, S., August, P., & Azrack, A. (2011). The development of Building Wellness™, a youth health literacy program. Journal of Health Communication, 16(Suppl. 3), 103–118. doi:10.1080/10810730 .2011.604385 Hess, J. S., & Straub, D. M. (2011). Brief report: Preliminary findings from a pilot health care transition education intervention for adolescents and young adults with special health care needs. Journal of Pediatric Psychology, 36, 172–178. doi:10.1093/jpepsy/jsq091 Kutner, M., Greenberg, E., Jin, Y., Paulsen, C., & White, S. (2006). The health literacy of America’s adults: Results from the 2003 National assessment of adult literacy. Washington, DC: National Center for Education Statistics: U.S. Department of Education. National Center for Healthcare Statistics. (2006). Health, United States, 2006 (NCHS publication no. 76–641496). Hyattsville, MD. Retrieved from http://www.cdc.gov/ nchs/data/hus/hus06.pdf Quinn, C. T., Rogers, Z. R., McCavit, T. L., & Buchanan, G. R. (2010). Improved survival of children and adolescents with sickle cell disease. Blood, 115, 3447–3452. doi:10.1182/blood-2009-07-233700 Ratzan, S. C., & Parker, R. M. (2000). Introduction. In C. R. Selden, M. Zorn, S. C. Ratzan, & R. M. Parker (Eds.), National library of medicine current bibliographies in medicine: Health literacy. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services. NLM Pub. No. CBM 2000-1 ed. Robinson, L. D., Jr., Calmes, D. P., & Bazargan, M. (2008). The impact of literacy enhancement on asthma-related
218
E. L. Perry
outcomes among underserved children. Journal of the National Medical Association, 100, 892–896. Sanders, L. M., Federico, S., Klass, P., Abrams, M. A., & Dreyer, B. (2009). Literacy and child health: A systematic review. Archives of Pediatrics & Adolescent Medicine, 163, 131–140. doi:10.1001/archpediatrics .2008.539 Schmidt, C. O., Fahland, R. A., Franze, M., Splieth, C., Thyrian, J. R., Plachta-Danielzik, S., . . . Kohlmann, T. (2010). Health-related behaviour, knowledge, attitudes, communication and social status in school children in eastern Germany. Health Education Research, 25, 542–551. doi:10.1093/her/cyq011, 10.1093/her/ cyq011 Steckelberg, A., Hulfenhaus, C., Kasper, J., & Muhlhauser, I. (2009). Ebm@school—A curriculum of critical health literacy for secondary school students: Results of a pilot study. International Journal of Public Health, 54, 158–165. doi:10.1007/s00038-008-7033-1 Vernon, J. A., Trujillo, A., Rosenbaum, S., & DeBuono, B. (2007). Low health literacy: Implications for national health policy. Retrieved October 20, 2012, from http://sphhs.gwu.edu/departments/healthpolicy/ CHPR/downloads/LowHealthLiteracyReport10_4_07 .pdf Whittemore, R., & Knafl, K. (2005). The integrative review: Updated methodoloogy. Journal of Advanced Nursing, 52, 546–553. World Health Organization. (2013). Adolescent health. Retrieved from http://www.who.int/topics/ adolescent_health/en/ Wu, A. D., Begoray, D. L., Macdonald, M., Wharf-Higgins, J., Frankish, J., Kwan, B., . . . Rootman, I. (2010). Developing and evaluating a relevant and feasible instrument for measuring health literacy of Canadian high school students. Health Promotion International, 25, 444–452. doi:10.1093/heapro/daq032
Journal for Specialists in Pediatric Nursing 19 (2014) 210–218 © 2014, Wiley Periodicals, Inc.
