- Email: [email protected]
Parent health literacy and satisfaction with plain language education materials in a pediatric surgery outpatient clinic: a pilot study
Journal of Pediatric Surgery (2012) 47, 964–969
www.elsevier.com/locate/jpedsurg
Parent health literacy and satisfaction with plain language education materials in a pediatric surgery outpatient clinic: a pilot study☆,☆☆ Damanjot Otala , Lindsay Wizowskic , Julia Pembertona , Kim Nagelb,c,d , Peter Fitzgeralda,b , J Mark Waltona,b,⁎ a
McMaster Pediatric Surgery Research Collaborative, Department of Surgery, McMaster University, Hamilton, Ontario, Canada L8N 3Z5 b Department of Pediatric Surgery, McMaster Children's Hospital, Hamilton, Ontario, Canada L8N 3Z5 c Hamilton Health Sciences, Hamilton, Ontario, Canada L8N 3Z5 d McMaster University School of Nursing, Hamilton, Ontario, Canada L8N 3Z5 Received 20 January 2012; accepted 26 January 2012
Key words: Health literacy; Pediatric clinic; Parents
Abstract Background: Although significant, the issue of health literacy (HL) among parents attending pediatric surgery outpatient clinics has received little attention. Purpose: The objectives of this study are to determine the HL skills of parents attending the pediatric surgery outpatient clinic at McMaster Children's Hospital and to describe parent satisfaction with plain language materials. Methods: This cross-sectional study was conducted at the pediatric surgery outpatient clinic at McMaster Children's Hospital. Using convenience sampling for 4 months, parents were recruited and interviewed regarding their demographic status. The Newest Vital Sign tool was used to assess HL. Feedback on the plain language education material was received. Results: Seventy-nine individuals were recruited, with a recruitment rate of 62%. Seventy-one percent had adequate HL. English as a first language and Canada as the place of birth were significantly correlated with adequate HL (r = 0.367, P b .001; r = 0.259, P b .05). Parents reported satisfaction with the plain language material, regardless of their HL level. Conclusion: Twenty-nine percent of parents showed inadequate HL, likely an underestimate owing to study limitations. Parents expressed satisfaction with the plain language material, emphasizing the need for clear, effective communication with patients and families. Future directions include evaluating staff knowledge of a universal precautions approach to health communication and the accessibility of plain language materials. © 2012 Elsevier Inc. All rights reserved.
☆
There were no issues of conflict of interest during the completion of this project. This project received no funding. ⁎ Corresponding author. McMaster Children's Hospital, Hamilton, Ontario, Canada L8N 3Z5. Tel.: +1 905 521 2100x75244; fax: +1 905 521 9992. E-mail address: [email protected] (J.M. Walton). ☆☆
0022-3468/$ – see front matter © 2012 Elsevier Inc. All rights reserved. doi:10.1016/j.jpedsurg.2012.01.057
Health literacy and plain language materials Health literacy refers to “the ability to access, understand, evaluate and communicate information as a way to promote, maintain and improve health in a variety of settings across the life-course” [1]. In Canada, about 60% of adults (almost 19.5 million) have low health literacy [2]. This means that these adults lack the skills needed to make health decisions, care for themselves and others, and function in the health care system [1,2]. Health literacy is influenced by personal factors (an individual's knowledge about health, literacy and cognitive skills, cultural beliefs, and understanding of the health care system) and system factors (communication skills of providers, complexity of health information, and characteristics of the health care setting) [3,4]. The inability to understand health information could have dire consequences. Davis et al [5] report that 62.7% of patients with low health literacy misunderstood prescription label instructions, which could cause serious medication errors. Because of the potential for harm, low health literacy is considered a patient safety issue in the hospital setting. Low health literacy is also associated with a range of adverse health outcomes including decreased use of preventive health services such as cancer screening, increased incidence of chronic conditions such as diabetes and hypertension, and increased risk of hospitalization and mortality [2,6-10]. The prevalence and impact of low parental health literacy in pediatric surgery have received little attention. Parents need adequate health literacy to understand their child's condition as well as the role of surgery in their child's treatment. Without adequate health literacy, they may not understand the risks and benefits of surgery and the use of alternative treatments. Limited parental health literacy skills are associated with higher rates of emergency department visits, hospitalizations, and severity of symptoms in their children [11]. However, more research is needed to fully evaluate the relationship between parental health literacy and child health outcomes. To improve parents' ability to use health information, health care providers can use a “universal precautions” approach to safe health communications [12]. A key strategy in implementing universal precautions is the use of plain language. Plain language is a way of organizing and presenting information so that it makes sense and is easy to read for the intended audience [13]. In pediatric surgery, health care providers can use plain language to ensure that parents receive verbal and written information about surgery that is not too complex. Many hospitals and health organizations have developed guidelines for plain language, such as “Writing Health Information for Patients and Families” [14] used at McMaster Children's Hospital (MCH). Despite widespread support for plain language, there is limited evidence of satisfaction with this technique from a patient's perspective. The objectives of this study are to determine the health literacy skills of parents of children attending the pediatric surgery outpatient clinic at MCH and to
965 describe parents' satisfaction with a sample of plain language education material. We predicted that (1) the prevalence of low health literacy among parents would be similar to that reported for Canadian adults and (2) parents would report satisfaction with the patient education material, regardless of their health literacy level.
1. Method This cross-sectional study was conducted at MCH in Hamilton, Ontario, from November 2010 to February 2011. Recruitment occurred in the outpatient general surgery clinic while families were waiting for their appointments. Parents or guardians were approached and invited to participate in the study by an independent research assistant (RA). For those who were interested in participating, the RA obtained informed consent. With participants' consent, the RA obtained demographic information, administered a health literacy screening tool (“Newest Vital Sign” [NVS]) and a plain language satisfaction survey on fever.
1.1. Sample A convenience sample was used, and parents were recruited during a period of 4 months. Inclusion criteria included the ability to see, comprehend, and speak English Table 1
Demographic characteristics of the sample
Variable
Total (n = 79)
Parent age (y), mean (±SD) Parent sex: male (%) Education Elementary (%) Secondary (%) Postsecondary (%) Other (%) Canada as place of birth: yes (%) Employment Employed outside the home (%) Employed inside the home (%) On leave (%) Unemployed (%) Other (%) Yearly household income N$20,000 (%) $20,000-$40,000 (%) $40,000-$80,000 (%) $80,000-$100,000 (%) N$100, 000 (%) Not reported (%) First language English (%) Other (%)
38 (±8.1) 25 1 28 68 3 76 50 15 15 10 10 8 10 20 9 21 32 87 13
966
D. Otal et al.
and whether informed consent was provided. This study was approved by the Hamilton Health Science Research Ethics Board (09-128).
1.2. Measures The RA asked the participants for demographic information including their sex, age, highest level of education completed, employment status, yearly household income, and first language. Participants were also asked if they were born in Canada and, if not, how many years they had been a Canadian resident. The first 3 digits of the postal codes of all patients in the clinic were collected, so it would be possible to see the regional distribution of our sample and, thus, allow us to determine the external validity of our study population. Parents' health literacy was assessed using the English version of the NVS. This instrument has good internal consistency reliability as evidenced by a Cronbach α more than .76 in English [15]. The tool's criterion validity is supported by another health literacy assessment, the Test of Functional Health Literacy in Adults (TOFHLA; r = 0.59, P b .001). In regard to construct validity, the NVS has been shown to correlate moderately with the TOFHLA and its shorter version [16]. These tests are used extensively in the
Fig. 1 study.
United States but are not tailored to the Canadian health care system. Both TOFHLA tests and the NVS measure reading, comprehension, and numeracy skills. The NVS is a screening tool based on a nutrition label from an ice cream container. It takes about 3 to 5 minutes to administer. The RA gave the participants the nutrition label and then asked 6 questions about how they would interpret and act on the information contained on the label (see Appendix). Participants could refer to the label while answering the questions. The RA recorded each participant's responses on a score sheet that included the answers. The participant's health literacy was interpreted based on the number of correct responses. A score of 0 to 1 suggests high likelihood (≥50%) of limited literacy, a score of 2 to 3 indicates the possibility of limited literacy, and a score of 4 to 6 almost always indicates adequate health literacy. Each participant was then given a 2-page information sheet titled “Fever.” This education material, produced by MCH, provides general information in plain language about managing a child's fever. Written at a grade 6 level, this material meets the recommendations of the Canadian Public Health Association for communicating health information to the public [13]. Parents' satisfaction with the educational material was assessed using a survey “Tell us what you think!” developed
an individual who attended the clinic but was not enrolled in the study.
an individual who attended the clinic and was enrolled in
Health literacy and plain language materials Percentage of participants
100
967 Table 3
90 80
Feedback from participants on “Fever” information sheet
Responses
Selected quotes
Positive
“I don't normally understand this but it seemed easy.” “It gives parents a piece of mind that they in fact are handling a fever appropriately.” “I think there was enough information because more in depth questions should be directed to the doctor.” “I already knew most of this.” “What are other options when my child has a fever? Maybe include a Telehealth number.” “Why is the ear thermometer not so accurate?” “Why can aspirin not be used?”
70 60 50 40 30 20 10 0 Limited Health Literacy
Possibly Limited Health Literacy
Adequate Health Literacy
Results
Fig. 2
Newest Vital Sign test results (n = 79).
by Patient Education Services at Hamilton Health Sciences [14]. Participants were asked to express their satisfaction on several criteria on a Likert scale of 1 to 5, with 1 being strongly disagree and 5 being strongly agree. A 5-point Likert scale was used because studies have shown that it is as sensitive as a 7-point Likert scale [17]. Although not tested for validity or reliability, this survey has been used by this multisite hospital for almost 20 years as formative evaluation during the development of patient education materials. The survey asks patients and families whether a patient education material is easy to read, easy to understand, informative, and helpful. Data were preliminarily explored graphically for trends and then descriptively using counts, means and standard deviations, and frequencies, where appropriate. Univariate regression analysis was performed using SPSS software (SPSS, Chicago, IL) to determine the correlation between the demographic variables and adequate health literacy. For each criterion in the “Tell us what you think!” survey, the median value was calculated; these results were stratified by health literacy level.
2. Results After 4 months, 79 of 145 parents were recruited, with a recruitment rate of 62%. The reasons for declining included lack of interest, busy with children, involved with another study, and too much information disclosure with respect to Table 2 Individual correlations among demographic variables and adequate health literacy Variable
Adequate health literacy
Age Education Canada as place of birth Employment Income English as first language
−0.09 0.122 0.367 ⁎ 0.062 0.051 0.259 ⁎⁎
⁎ P b .001. ⁎⁎ P b .05.
Neutral Constructive
the consent form. Of those approached, 11% were ineligible. The average age of parents in the study was 38 years (SD, ±8.1), and 25% were male. Seventy-six percent stated Canada as their place of birth, and 87% stated English as their first language (Table 1). Using the postal code data of those who attended the pediatric surgery outpatient clinic, a map illustrating the distribution of the sample across the Hamilton area was created (Fig. 1). The map illustrates that the sample obtained is representative for much of the city, but the downtown region (postal codes L8L and L8H) was underrepresented in the sample. Overall, 71% of parents had adequate health literacy, whereas 29% either had limited or a possibility of limited health literacy (Fig. 2). No significant correlations between several variables were found, including age, education, employment, and income. As seen in Table 2, English as a first language and Canada as the place of birth were significantly correlated with adequate health literacy (r = 0.367, P b .001; r = 0.259, P b.05). The parents reported satisfaction with the plain language material, regardless of their health literacy level (Table 2). Written feedback from the parents is summarized in Table 3.
3. Discussion In general, parents attending the pediatric outpatient clinic had higher levels of health literacy (71%) than what is reported nationally (40% of Canadian adults have adequate health literacy skills) [2]. The difference in health literacy levels may be explained by the age of participants. Younger age groups tend to have higher literacy proficiency [2]. It could also be explained by the presence of a selection bias caused by our use of a convenience sample and the underrepresentation from the downtown Hamilton population, which is known to have the lowest rate of literacy in the city [2]. Participants who spoke English as a second language or recently immigrated were more likely to have inadequate
968 literacy. The Canadian Council on Learning also found that being foreign-born had a strong negative effect on health literacy [2]. Health literacy in this study was not associated with education or income, whereas in the national study, education was a strong predictor of health literacy and household income had a weak effect. A similar study conducted by Walker et al [18] used TOFHLA and another screening tool (Rapid Estimate of Adult Literacy in Medicine) to measure the health literacy levels of a convenience sample of hospital patients. Twenty-three percent of patients had marginal or inadequate health literacy. Adequate literacy was significantly related to socioeconomic status and education. Although a minority, the percentage of parents who were likely to have inadequate health literacy (29%) is significant. In this study, the impact of inadequate health literacy was not measured. These parents may not have understood information about their child's condition or the planned surgical treatment, putting into question whether their consent was fully informed. If they misunderstood preoperative and postoperative instructions (regarding diet, activity, pain management, incision care, what to watch for, and how to get help), there could be an increased risk of medication errors and other complications. If communications regarding “nil per os” guidelines for surgery patients are misunderstood, this can lead to cancellation of surgery. Misunderstanding of instructions can lead to additional health care visits that could strain the health care system [19]. More research is needed to evaluate the relationship between health literacy and health care costs [20,21]. The plain language educational material, developed by the clinical team and a Patient Education Specialist, was well received by parents, regardless of their literacy skills. This reflects the findings of 2 studies in which patients at all literacy levels preferred plain language [22,23]. Shone et al [24] assessed the health literacy of parents with children who had asthma and found that parents with limited health literacy worried more and perceived greater overall burden from their child's illness. Using plain language with patients, parents and families could promote understanding and minimize these fears. This, along with the positive reactions to the plain language material, highlights the value of clear communication and the universal precautions approach. There are several limitations to this study. The small, convenience sample reduces the generalizability of the findings. Also, as can be seen in Fig. 1, an adequate sample from the Hamilton downtown core was not obtained, introducing a selection bias. Individuals from this area were present in the clinic during recruitment but declined to participate. In a series published in the Hamilton Spectator, the local newspaper, the downtown area ranked the lowest with respect to health, economic, and social variables in comparison with other regions of Hamilton [25]. The lack of participants from the downtown area may have contributed to the higher overall health literacy level reported in this
D. Otal et al. study. The space constraints in the clinic made it difficult for the study to be conducted in private, which may have deterred parents from participating. Also, the study questions were completed while waiting for appointment, introducing time constraints. The lack of consistent measurement of health literacy limits the interpretation of the findings. Measuring proficiency of actual health literacy tasks, as done for the national study, was not possible in this study. This study was conducted in a busy, clinical setting where only a quick screening tool was feasible. Other screening tools were rejected by the research team: TOFHLA with its reference to insurance forms was not appropriate for a Canadian study, and the Rapid Estimate of Adult Literacy in Medicine, which measures word recognition and not numeracy, was not considered as comprehensive as the NVS [26]. There are several avenues that future research should focus on. The results of this study are limited to the population in the MCH pediatric surgery outpatient clinic. It would be helpful to reproduce the study with a larger, multisite sample of parents whose children are having surgery and evaluate the impact of parental health literacy on postsurgical outcomes. For a true evaluation of health literacy, the issue of nonresponse bias would need to be addressed because parents who have difficulty reading may choose not to participate. Because parents expressed satisfaction with the education materials, it would be pertinent to evaluate whether in actual practice, the current methods of distribution (in print and online) are effective and if parents are accessing and using the materials related to their child's care. Finally, future research should assess physician and staff awareness of health literacy and the use of techniques that facilitate understanding, such as plain language and other health literacy universal precautions. This would help identify the strategies needed to improve parents' health literacy.
References [1] Rootman I, Gordon-El-Bihbety D, Canadian Public Health Association. A vision for a health literate Canada: report of the expert panel on health literacy 2008. Accessed May 31, 2011. http://www.cpha.ca/ uploads/portals/h-l/report_e.pdf. [2] Canadian Council on Learning. Health literacy in Canada: a healthy understanding. Accessed May 31, 2011. http://www.ccl-cca.ca/pdfs/ HealthLiteracy/HealthLiteracyReportFeb2008E.pdf. [3] Berkman N, Sheridan S, Donahues K, et al. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med 2011;155:97-107. [4] DeWalt D, Hink A. Health literacy and child health outcomes: a systematic review of the literature. Pediatrics 2009;124:S265-74. [5] Davis TC, Wolf MS, Bass PF III, et al. Literacy and misunderstanding prescription drug labels. Ann Intern Med 2006;145:887-94. [6] Nielsen-Bohlman L, Panzer A, Kindig D, editors. Health literacy: a prescription to end confusion. Washington, DC: The National Academies Press; 2004. p. 59-107. Retrieved September 16, 2010, from http://www.nap.edu/openbook.php?record_id=10883&page=1. [7] Schwartzberg J, VanGeest J, Wang C. Understanding health literacy. Atlanta, GA: American Medical Association Press; 2005.
Health literacy and plain language materials [8] Davis T, Dolan N, Ferreira M, et al. The role of inadequate health literacy skills in colorectal cancer screening. Cancer Invest 2001;19: 193-200. [9] Sudore R, Yaffe K, Satterfield S, et al. Limited literacy and mortality in the elderly. J Gen Intern Med 2006;21:806-12. [10] Baker D, Wolf M, Feinglass J, et al. Health literacy and mortality among elderly persons. Arch Intern Med 2007;167:1503-9. [11] Hironaka LK, Paasche-Orlow M. The implications of health literacy on patient-provider communication. Arch Dis Child 2008;93: 428-32. [12] American Medical Association Foundation and American Medical Association. Health literacy and patient safety: help patients understand. Chicago, IL: AMA Press; 2007. [13] Canadian Public Health Association. Health Literacy Portal 2008. Accessed May 17, 2011. http://www.cpha.ca/en/portals/h-l.aspx. [14] Wizowski L, Harper T, Hutchings T. Writing health information for patients and families. 3rd ed. Hamilton, Ontario: Hamilton Health Sciences; 2008. http://www.ccl-cca.ca/ccl/Reports/HealthLiteracy.html. [15] Weiss B, Mays M, Martz W, et al. Quick assessment of literacy in primary care: the Newest Vital Sign. Ann Fam Med 2005;3: 514-22. [16] Jordan J, Osborne R, Buchbinder R. Critical appraisal of health literacy indices revealed variable underlying constructs, narrow content and psychometric weaknesses. JCE 2010;64:366-79. [17] Rowe L, Kind AL, Brandel M, et al. Evaluating satisfaction with patient education material. J Radiat Oncol Sci 2007;16:9-21.
969 [18] Walker J, Pepa C, Gerard PS. Assessing the health literacy levels of patients using selected hospital services. Clin Nurse Spec 2010;24:31-7. [19] DeWalt D, Dilling M, Rosenthal M, et al. Low parental literacy is associated with worse asthma care measures in children. Ambul Pediatr 2007;7:25-31. [20] Eichler K, Wieser S, Brugger U. The costs of limited health literacy: a systematic review. Int J Public Health 2009;54:313-24. [21] Agency for Healthcare Research and Quality. Evidence Report/Technology Assessment #199—health literacy interventions and outcomes: an updated systematic review. Accessed on June 6, 2011. http://www. ahrq.gov/clinic/epcsums/litupsum.pdf. [22] Sudore R, Landefeld S, Barnes D, et al. An advance directive redesigned to meet the literacy level of most adults: a randomized trial. Patient Educ Couns 2007;69:165-95. [23] Tait A, Voepel-Lewis T, Zikmund-Fisher B, et al. The effect of format on parents' understanding of the risks and benefits of clinical research: a comparison between text, tables, and graphics. J Health Commun 2010;15:487-501. [24] Shone LP, Conn KM, Sanders L, et al. The role of parent health literacy among urban children with persistent asthma. Patient Educ Couns 2009;75:368-75. [25] Buist S. Code Red—where you live affects your health. Hamilt Spect 2011. http://www.thespec.com/topic/codered. [26] Osborn CY, Weiss BD, Davis TC, et al. Measuring adult health literacy in health care: performance of the Newest Vital Sign. Am J Health Behav 2007;31:S36-46.
Appendix. The Newest Vital Sign test label and scoring sheet
www.elsevier.com/locate/jpedsurg
Parent health literacy and satisfaction with plain language education materials in a pediatric surgery outpatient clinic: a pilot study☆,☆☆ Damanjot Otala , Lindsay Wizowskic , Julia Pembertona , Kim Nagelb,c,d , Peter Fitzgeralda,b , J Mark Waltona,b,⁎ a
McMaster Pediatric Surgery Research Collaborative, Department of Surgery, McMaster University, Hamilton, Ontario, Canada L8N 3Z5 b Department of Pediatric Surgery, McMaster Children's Hospital, Hamilton, Ontario, Canada L8N 3Z5 c Hamilton Health Sciences, Hamilton, Ontario, Canada L8N 3Z5 d McMaster University School of Nursing, Hamilton, Ontario, Canada L8N 3Z5 Received 20 January 2012; accepted 26 January 2012
Key words: Health literacy; Pediatric clinic; Parents
Abstract Background: Although significant, the issue of health literacy (HL) among parents attending pediatric surgery outpatient clinics has received little attention. Purpose: The objectives of this study are to determine the HL skills of parents attending the pediatric surgery outpatient clinic at McMaster Children's Hospital and to describe parent satisfaction with plain language materials. Methods: This cross-sectional study was conducted at the pediatric surgery outpatient clinic at McMaster Children's Hospital. Using convenience sampling for 4 months, parents were recruited and interviewed regarding their demographic status. The Newest Vital Sign tool was used to assess HL. Feedback on the plain language education material was received. Results: Seventy-nine individuals were recruited, with a recruitment rate of 62%. Seventy-one percent had adequate HL. English as a first language and Canada as the place of birth were significantly correlated with adequate HL (r = 0.367, P b .001; r = 0.259, P b .05). Parents reported satisfaction with the plain language material, regardless of their HL level. Conclusion: Twenty-nine percent of parents showed inadequate HL, likely an underestimate owing to study limitations. Parents expressed satisfaction with the plain language material, emphasizing the need for clear, effective communication with patients and families. Future directions include evaluating staff knowledge of a universal precautions approach to health communication and the accessibility of plain language materials. © 2012 Elsevier Inc. All rights reserved.
☆
There were no issues of conflict of interest during the completion of this project. This project received no funding. ⁎ Corresponding author. McMaster Children's Hospital, Hamilton, Ontario, Canada L8N 3Z5. Tel.: +1 905 521 2100x75244; fax: +1 905 521 9992. E-mail address: [email protected] (J.M. Walton). ☆☆
0022-3468/$ – see front matter © 2012 Elsevier Inc. All rights reserved. doi:10.1016/j.jpedsurg.2012.01.057
Health literacy and plain language materials Health literacy refers to “the ability to access, understand, evaluate and communicate information as a way to promote, maintain and improve health in a variety of settings across the life-course” [1]. In Canada, about 60% of adults (almost 19.5 million) have low health literacy [2]. This means that these adults lack the skills needed to make health decisions, care for themselves and others, and function in the health care system [1,2]. Health literacy is influenced by personal factors (an individual's knowledge about health, literacy and cognitive skills, cultural beliefs, and understanding of the health care system) and system factors (communication skills of providers, complexity of health information, and characteristics of the health care setting) [3,4]. The inability to understand health information could have dire consequences. Davis et al [5] report that 62.7% of patients with low health literacy misunderstood prescription label instructions, which could cause serious medication errors. Because of the potential for harm, low health literacy is considered a patient safety issue in the hospital setting. Low health literacy is also associated with a range of adverse health outcomes including decreased use of preventive health services such as cancer screening, increased incidence of chronic conditions such as diabetes and hypertension, and increased risk of hospitalization and mortality [2,6-10]. The prevalence and impact of low parental health literacy in pediatric surgery have received little attention. Parents need adequate health literacy to understand their child's condition as well as the role of surgery in their child's treatment. Without adequate health literacy, they may not understand the risks and benefits of surgery and the use of alternative treatments. Limited parental health literacy skills are associated with higher rates of emergency department visits, hospitalizations, and severity of symptoms in their children [11]. However, more research is needed to fully evaluate the relationship between parental health literacy and child health outcomes. To improve parents' ability to use health information, health care providers can use a “universal precautions” approach to safe health communications [12]. A key strategy in implementing universal precautions is the use of plain language. Plain language is a way of organizing and presenting information so that it makes sense and is easy to read for the intended audience [13]. In pediatric surgery, health care providers can use plain language to ensure that parents receive verbal and written information about surgery that is not too complex. Many hospitals and health organizations have developed guidelines for plain language, such as “Writing Health Information for Patients and Families” [14] used at McMaster Children's Hospital (MCH). Despite widespread support for plain language, there is limited evidence of satisfaction with this technique from a patient's perspective. The objectives of this study are to determine the health literacy skills of parents of children attending the pediatric surgery outpatient clinic at MCH and to
965 describe parents' satisfaction with a sample of plain language education material. We predicted that (1) the prevalence of low health literacy among parents would be similar to that reported for Canadian adults and (2) parents would report satisfaction with the patient education material, regardless of their health literacy level.
1. Method This cross-sectional study was conducted at MCH in Hamilton, Ontario, from November 2010 to February 2011. Recruitment occurred in the outpatient general surgery clinic while families were waiting for their appointments. Parents or guardians were approached and invited to participate in the study by an independent research assistant (RA). For those who were interested in participating, the RA obtained informed consent. With participants' consent, the RA obtained demographic information, administered a health literacy screening tool (“Newest Vital Sign” [NVS]) and a plain language satisfaction survey on fever.
1.1. Sample A convenience sample was used, and parents were recruited during a period of 4 months. Inclusion criteria included the ability to see, comprehend, and speak English Table 1
Demographic characteristics of the sample
Variable
Total (n = 79)
Parent age (y), mean (±SD) Parent sex: male (%) Education Elementary (%) Secondary (%) Postsecondary (%) Other (%) Canada as place of birth: yes (%) Employment Employed outside the home (%) Employed inside the home (%) On leave (%) Unemployed (%) Other (%) Yearly household income N$20,000 (%) $20,000-$40,000 (%) $40,000-$80,000 (%) $80,000-$100,000 (%) N$100, 000 (%) Not reported (%) First language English (%) Other (%)
38 (±8.1) 25 1 28 68 3 76 50 15 15 10 10 8 10 20 9 21 32 87 13
966
D. Otal et al.
and whether informed consent was provided. This study was approved by the Hamilton Health Science Research Ethics Board (09-128).
1.2. Measures The RA asked the participants for demographic information including their sex, age, highest level of education completed, employment status, yearly household income, and first language. Participants were also asked if they were born in Canada and, if not, how many years they had been a Canadian resident. The first 3 digits of the postal codes of all patients in the clinic were collected, so it would be possible to see the regional distribution of our sample and, thus, allow us to determine the external validity of our study population. Parents' health literacy was assessed using the English version of the NVS. This instrument has good internal consistency reliability as evidenced by a Cronbach α more than .76 in English [15]. The tool's criterion validity is supported by another health literacy assessment, the Test of Functional Health Literacy in Adults (TOFHLA; r = 0.59, P b .001). In regard to construct validity, the NVS has been shown to correlate moderately with the TOFHLA and its shorter version [16]. These tests are used extensively in the
Fig. 1 study.
United States but are not tailored to the Canadian health care system. Both TOFHLA tests and the NVS measure reading, comprehension, and numeracy skills. The NVS is a screening tool based on a nutrition label from an ice cream container. It takes about 3 to 5 minutes to administer. The RA gave the participants the nutrition label and then asked 6 questions about how they would interpret and act on the information contained on the label (see Appendix). Participants could refer to the label while answering the questions. The RA recorded each participant's responses on a score sheet that included the answers. The participant's health literacy was interpreted based on the number of correct responses. A score of 0 to 1 suggests high likelihood (≥50%) of limited literacy, a score of 2 to 3 indicates the possibility of limited literacy, and a score of 4 to 6 almost always indicates adequate health literacy. Each participant was then given a 2-page information sheet titled “Fever.” This education material, produced by MCH, provides general information in plain language about managing a child's fever. Written at a grade 6 level, this material meets the recommendations of the Canadian Public Health Association for communicating health information to the public [13]. Parents' satisfaction with the educational material was assessed using a survey “Tell us what you think!” developed
an individual who attended the clinic but was not enrolled in the study.
an individual who attended the clinic and was enrolled in
Health literacy and plain language materials Percentage of participants
100
967 Table 3
90 80
Feedback from participants on “Fever” information sheet
Responses
Selected quotes
Positive
“I don't normally understand this but it seemed easy.” “It gives parents a piece of mind that they in fact are handling a fever appropriately.” “I think there was enough information because more in depth questions should be directed to the doctor.” “I already knew most of this.” “What are other options when my child has a fever? Maybe include a Telehealth number.” “Why is the ear thermometer not so accurate?” “Why can aspirin not be used?”
70 60 50 40 30 20 10 0 Limited Health Literacy
Possibly Limited Health Literacy
Adequate Health Literacy
Results
Fig. 2
Newest Vital Sign test results (n = 79).
by Patient Education Services at Hamilton Health Sciences [14]. Participants were asked to express their satisfaction on several criteria on a Likert scale of 1 to 5, with 1 being strongly disagree and 5 being strongly agree. A 5-point Likert scale was used because studies have shown that it is as sensitive as a 7-point Likert scale [17]. Although not tested for validity or reliability, this survey has been used by this multisite hospital for almost 20 years as formative evaluation during the development of patient education materials. The survey asks patients and families whether a patient education material is easy to read, easy to understand, informative, and helpful. Data were preliminarily explored graphically for trends and then descriptively using counts, means and standard deviations, and frequencies, where appropriate. Univariate regression analysis was performed using SPSS software (SPSS, Chicago, IL) to determine the correlation between the demographic variables and adequate health literacy. For each criterion in the “Tell us what you think!” survey, the median value was calculated; these results were stratified by health literacy level.
2. Results After 4 months, 79 of 145 parents were recruited, with a recruitment rate of 62%. The reasons for declining included lack of interest, busy with children, involved with another study, and too much information disclosure with respect to Table 2 Individual correlations among demographic variables and adequate health literacy Variable
Adequate health literacy
Age Education Canada as place of birth Employment Income English as first language
−0.09 0.122 0.367 ⁎ 0.062 0.051 0.259 ⁎⁎
⁎ P b .001. ⁎⁎ P b .05.
Neutral Constructive
the consent form. Of those approached, 11% were ineligible. The average age of parents in the study was 38 years (SD, ±8.1), and 25% were male. Seventy-six percent stated Canada as their place of birth, and 87% stated English as their first language (Table 1). Using the postal code data of those who attended the pediatric surgery outpatient clinic, a map illustrating the distribution of the sample across the Hamilton area was created (Fig. 1). The map illustrates that the sample obtained is representative for much of the city, but the downtown region (postal codes L8L and L8H) was underrepresented in the sample. Overall, 71% of parents had adequate health literacy, whereas 29% either had limited or a possibility of limited health literacy (Fig. 2). No significant correlations between several variables were found, including age, education, employment, and income. As seen in Table 2, English as a first language and Canada as the place of birth were significantly correlated with adequate health literacy (r = 0.367, P b .001; r = 0.259, P b.05). The parents reported satisfaction with the plain language material, regardless of their health literacy level (Table 2). Written feedback from the parents is summarized in Table 3.
3. Discussion In general, parents attending the pediatric outpatient clinic had higher levels of health literacy (71%) than what is reported nationally (40% of Canadian adults have adequate health literacy skills) [2]. The difference in health literacy levels may be explained by the age of participants. Younger age groups tend to have higher literacy proficiency [2]. It could also be explained by the presence of a selection bias caused by our use of a convenience sample and the underrepresentation from the downtown Hamilton population, which is known to have the lowest rate of literacy in the city [2]. Participants who spoke English as a second language or recently immigrated were more likely to have inadequate
968 literacy. The Canadian Council on Learning also found that being foreign-born had a strong negative effect on health literacy [2]. Health literacy in this study was not associated with education or income, whereas in the national study, education was a strong predictor of health literacy and household income had a weak effect. A similar study conducted by Walker et al [18] used TOFHLA and another screening tool (Rapid Estimate of Adult Literacy in Medicine) to measure the health literacy levels of a convenience sample of hospital patients. Twenty-three percent of patients had marginal or inadequate health literacy. Adequate literacy was significantly related to socioeconomic status and education. Although a minority, the percentage of parents who were likely to have inadequate health literacy (29%) is significant. In this study, the impact of inadequate health literacy was not measured. These parents may not have understood information about their child's condition or the planned surgical treatment, putting into question whether their consent was fully informed. If they misunderstood preoperative and postoperative instructions (regarding diet, activity, pain management, incision care, what to watch for, and how to get help), there could be an increased risk of medication errors and other complications. If communications regarding “nil per os” guidelines for surgery patients are misunderstood, this can lead to cancellation of surgery. Misunderstanding of instructions can lead to additional health care visits that could strain the health care system [19]. More research is needed to evaluate the relationship between health literacy and health care costs [20,21]. The plain language educational material, developed by the clinical team and a Patient Education Specialist, was well received by parents, regardless of their literacy skills. This reflects the findings of 2 studies in which patients at all literacy levels preferred plain language [22,23]. Shone et al [24] assessed the health literacy of parents with children who had asthma and found that parents with limited health literacy worried more and perceived greater overall burden from their child's illness. Using plain language with patients, parents and families could promote understanding and minimize these fears. This, along with the positive reactions to the plain language material, highlights the value of clear communication and the universal precautions approach. There are several limitations to this study. The small, convenience sample reduces the generalizability of the findings. Also, as can be seen in Fig. 1, an adequate sample from the Hamilton downtown core was not obtained, introducing a selection bias. Individuals from this area were present in the clinic during recruitment but declined to participate. In a series published in the Hamilton Spectator, the local newspaper, the downtown area ranked the lowest with respect to health, economic, and social variables in comparison with other regions of Hamilton [25]. The lack of participants from the downtown area may have contributed to the higher overall health literacy level reported in this
D. Otal et al. study. The space constraints in the clinic made it difficult for the study to be conducted in private, which may have deterred parents from participating. Also, the study questions were completed while waiting for appointment, introducing time constraints. The lack of consistent measurement of health literacy limits the interpretation of the findings. Measuring proficiency of actual health literacy tasks, as done for the national study, was not possible in this study. This study was conducted in a busy, clinical setting where only a quick screening tool was feasible. Other screening tools were rejected by the research team: TOFHLA with its reference to insurance forms was not appropriate for a Canadian study, and the Rapid Estimate of Adult Literacy in Medicine, which measures word recognition and not numeracy, was not considered as comprehensive as the NVS [26]. There are several avenues that future research should focus on. The results of this study are limited to the population in the MCH pediatric surgery outpatient clinic. It would be helpful to reproduce the study with a larger, multisite sample of parents whose children are having surgery and evaluate the impact of parental health literacy on postsurgical outcomes. For a true evaluation of health literacy, the issue of nonresponse bias would need to be addressed because parents who have difficulty reading may choose not to participate. Because parents expressed satisfaction with the education materials, it would be pertinent to evaluate whether in actual practice, the current methods of distribution (in print and online) are effective and if parents are accessing and using the materials related to their child's care. Finally, future research should assess physician and staff awareness of health literacy and the use of techniques that facilitate understanding, such as plain language and other health literacy universal precautions. This would help identify the strategies needed to improve parents' health literacy.
References [1] Rootman I, Gordon-El-Bihbety D, Canadian Public Health Association. A vision for a health literate Canada: report of the expert panel on health literacy 2008. Accessed May 31, 2011. http://www.cpha.ca/ uploads/portals/h-l/report_e.pdf. [2] Canadian Council on Learning. Health literacy in Canada: a healthy understanding. Accessed May 31, 2011. http://www.ccl-cca.ca/pdfs/ HealthLiteracy/HealthLiteracyReportFeb2008E.pdf. [3] Berkman N, Sheridan S, Donahues K, et al. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med 2011;155:97-107. [4] DeWalt D, Hink A. Health literacy and child health outcomes: a systematic review of the literature. Pediatrics 2009;124:S265-74. [5] Davis TC, Wolf MS, Bass PF III, et al. Literacy and misunderstanding prescription drug labels. Ann Intern Med 2006;145:887-94. [6] Nielsen-Bohlman L, Panzer A, Kindig D, editors. Health literacy: a prescription to end confusion. Washington, DC: The National Academies Press; 2004. p. 59-107. Retrieved September 16, 2010, from http://www.nap.edu/openbook.php?record_id=10883&page=1. [7] Schwartzberg J, VanGeest J, Wang C. Understanding health literacy. Atlanta, GA: American Medical Association Press; 2005.
Health literacy and plain language materials [8] Davis T, Dolan N, Ferreira M, et al. The role of inadequate health literacy skills in colorectal cancer screening. Cancer Invest 2001;19: 193-200. [9] Sudore R, Yaffe K, Satterfield S, et al. Limited literacy and mortality in the elderly. J Gen Intern Med 2006;21:806-12. [10] Baker D, Wolf M, Feinglass J, et al. Health literacy and mortality among elderly persons. Arch Intern Med 2007;167:1503-9. [11] Hironaka LK, Paasche-Orlow M. The implications of health literacy on patient-provider communication. Arch Dis Child 2008;93: 428-32. [12] American Medical Association Foundation and American Medical Association. Health literacy and patient safety: help patients understand. Chicago, IL: AMA Press; 2007. [13] Canadian Public Health Association. Health Literacy Portal 2008. Accessed May 17, 2011. http://www.cpha.ca/en/portals/h-l.aspx. [14] Wizowski L, Harper T, Hutchings T. Writing health information for patients and families. 3rd ed. Hamilton, Ontario: Hamilton Health Sciences; 2008. http://www.ccl-cca.ca/ccl/Reports/HealthLiteracy.html. [15] Weiss B, Mays M, Martz W, et al. Quick assessment of literacy in primary care: the Newest Vital Sign. Ann Fam Med 2005;3: 514-22. [16] Jordan J, Osborne R, Buchbinder R. Critical appraisal of health literacy indices revealed variable underlying constructs, narrow content and psychometric weaknesses. JCE 2010;64:366-79. [17] Rowe L, Kind AL, Brandel M, et al. Evaluating satisfaction with patient education material. J Radiat Oncol Sci 2007;16:9-21.
969 [18] Walker J, Pepa C, Gerard PS. Assessing the health literacy levels of patients using selected hospital services. Clin Nurse Spec 2010;24:31-7. [19] DeWalt D, Dilling M, Rosenthal M, et al. Low parental literacy is associated with worse asthma care measures in children. Ambul Pediatr 2007;7:25-31. [20] Eichler K, Wieser S, Brugger U. The costs of limited health literacy: a systematic review. Int J Public Health 2009;54:313-24. [21] Agency for Healthcare Research and Quality. Evidence Report/Technology Assessment #199—health literacy interventions and outcomes: an updated systematic review. Accessed on June 6, 2011. http://www. ahrq.gov/clinic/epcsums/litupsum.pdf. [22] Sudore R, Landefeld S, Barnes D, et al. An advance directive redesigned to meet the literacy level of most adults: a randomized trial. Patient Educ Couns 2007;69:165-95. [23] Tait A, Voepel-Lewis T, Zikmund-Fisher B, et al. The effect of format on parents' understanding of the risks and benefits of clinical research: a comparison between text, tables, and graphics. J Health Commun 2010;15:487-501. [24] Shone LP, Conn KM, Sanders L, et al. The role of parent health literacy among urban children with persistent asthma. Patient Educ Couns 2009;75:368-75. [25] Buist S. Code Red—where you live affects your health. Hamilt Spect 2011. http://www.thespec.com/topic/codered. [26] Osborn CY, Weiss BD, Davis TC, et al. Measuring adult health literacy in health care: performance of the Newest Vital Sign. Am J Health Behav 2007;31:S36-46.
Appendix. The Newest Vital Sign test label and scoring sheet