International Journal of Pediatric Otorhinolaryngology 78 (2014) 354–358

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Quality and readability of information pamphlets on hearing and paediatric hearing loss in the Gauteng Province, South Africa Karin Joubert *, Esther Githinji Department of Speech Pathology and Audiology, University of the Witwatersrand, Johannesburg, South Africa

A R T I C L E I N F O

A B S T R A C T

Article history: Received 29 September 2013 Received in revised form 10 December 2013 Accepted 13 December 2013 Available online 25 December 2013

Objectives: The implementation of early hearing detection and intervention (EHDI) programmes is necessary in order to facilitate the early identification of hearing loss. An important component of EHDI is parental education. International and national guidelines stipulating that comprehensive, unbiased and appropriate information pamphlets should be provided to parents as part of EHDI programmes, however little is known about the availability and readability of such materials in South Africa. The objectives of this study were therefore to determine the availability of information pamphlets on hearing and hearing loss in children at public hospitals in the Gauteng Province of South Africa. In addition, the quality and readability levels of these pamphlets were determined. Methods: A non-experimental, descriptive research design was employed for this study. Information on the availability of leaflets at public health hospitals was obtained through a telephonic survey. Twentyone information pamphlets available at these hospitals were then evaluated to determine the quality and readability levels. Results: It was found that 73% of audiology departments at public hospitals in Gauteng had information pamphlets available on hearing and hearing loss in children. Of the pamphlets evaluated, the majority were rated to ‘present with serious problems’ questioning the quality of the content included. In addition, it was found that on average the readability level of these pamphlets were at a sixth-grade level, much higher that the recommended fourth-grade reading level. Conclusions: The need for development of quality educational material focused on providing parents with unbiased, comprehensive and appropriate information on hearing and hearing loss in children has been highlighted. Proposed guidelines were recommended to assist audiologists in this endeavour. The importance of providing appropriate parental educational materials for the success of EHDI in South Africa should not be underestimated. ß 2013 Elsevier Ireland Ltd. All rights reserved.

Keywords: Health literacy Hearing Hearing loss Public healthcare

1. Introduction Functional health literacy (FHL) can be defined as the capability to read, comprehend and execute medical information [1]. It is estimated that 16% of the world’s adult population lack basic literacy skills [2]. Literacy levels in South Africa, a developing country, are low as it has been found that one in every six (40%) South Africans are functionally illiterate [3]. The high rate of illiteracy amongst South Africans is devastating as literacy is a vital component when accessing medical information. It is argued that there is a connection between low FHL and poor health outcomes as individuals with lower FHL are 1.5–3 times more likely to have

* Corresponding author at: Department of Speech Pathology and Audiology, University of the Witwatersrand, Private Bag 3, WITS, 2050, South Africa. Tel.: +27 11 717 4577; fax: +27 11 717 4572. E-mail address: [email protected] (K. Joubert). 0165-5876/$ – see front matter ß 2013 Elsevier Ireland Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ijporl.2013.12.018

poor health outcomes when compared to individuals with higher FHL [4]. Although basic literacy is essential for health literacy, it is not the only aspect that contributes to understanding. It is postulated that an individual can be literate when in a familiar context and location but functionally ‘illiterate’ when they are required to understand and reply to unfamiliar jargon and expressions in an unfamiliar setting. For many individuals the healthcare environment is unfamiliar mostly due to their limited exposure to medical terminology and jargon. This is also true for parents of infants and children with hearing loss. Hearing loss is the most common birth defect in newborns. Approximately 32 million children below the age of 15 years have a hearing loss [5]. Each year a total of 718 000 infants worldwide are born with or acquire a bilateral permanent hearing loss [6]. It is estimated that each day 16–17 babies are born with some degree of hearing loss in South Africa [7]. Traditionally, infant hearing loss is identified by caregivers, when the caregiver express concerns regarding speech and

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language delays which usually arise after 2 years of age. It is wellknown that early identification of hearing loss is vital in order to guarantee optimal results for infants with hearing loss. Early identification of hearing loss can be facilitated by the implementation of early hearing detection and intervention (EHDI) programmes. One of the most important aspects of a successful EHDI programme is parental education [8]. Audiologists plays a vital role in educating caregivers on hearing related issues, as well as relaying complex information to caregivers that have minimum literacy levels or are unable to comprehend printed information. A recent study reported that 74% of South African audiologists surveyed believed that the most important issue in the late diagnosis of hearing loss in children is the lack of parental knowledge [9]. Parental awareness and understanding of EHDI will have a lasting outcome on their child. Parents of infants and children with hearing loss have expressed the desire to be informed about hearing screening prior to the screening as well as the urgency of follow-up [10]. Despite this many parents, especially within the public health care sector of South Africa, are left to educate themselves regarding hearing and hearing loss. Gauteng is the most densely populated province in South Africa, as more than 20% of the country’s total population reside there. There is only 33 public hospitals in Gauteng servicing 86% of the province’s residents [11]. As audiological services at these public hospitals are limited other avenues, such as the distribution of information pamphlets at hospitals and clinics should be used to promote EHDI. Parents of infants and children with hearing loss have acknowledged shortfalls concerning the availability of printed educational materials explaining EHDI [10]. It is important for audiologists to educate parents and/or caregivers appropriately in order to assist them in comprehending printed information and improving the health state of their child. By ignoring linguistic and literacy variances, audiologists may be violating the human rights of these individuals and their families. To date there is limited information on the availability and quality of information pamphlets provided to South African parents and/or caregivers of children with hearing loss. The study therefore aimed to (i) determine the availability of information pamphlets on hearing and hearing loss in children at public sector hospitals in Gauteng; (ii) calculate the readability level of the information pamphlets on hearing and hearing loss in children; and (iii) evaluate the quality of the information pamphlets (i.e. content and structure) on hearing and hearing loss in children.

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2. Methods 2.1. Participants All public health hospitals in Gauteng that offer that audiological services (n = 31) were contacted. A telephonic survey was conducted with audiologists to determine the availability of information pamphlets on hearing and hearing loss in these departments. Of these departments, five were excluded due to either vacant posts, not being reachable or departments did not offer paediatric services. The hospital participant group (N1) therefore consisted of 26 public health sector hospitals. Information pamphlets (N2) were then collected from all the public health audiology departments that agreed to participate in the study. Fifty eight information pamphlets were collected from hospitals, but as a number of pamphlets provided were identical, only 21 information pamphlets were included in the study. These pamphlets were all written in English and contained information regarding hearing and hearing loss in children. 2.2. Materials The information pamphlets were then analysed using the Simple Measure of Gobbledegook (SMOG) [12] and the Ensuring Quality Information for Patients (EQIP) [13]. The SMOG readability formula is simple, accurate and widely used in determining reading levels of health information materials [14]. A score of between 3 and 8 indicates that the printed text is suitable for individuals who have completed primary school. Scores between 9 and 12 indicate suitability for individuals who have completed high school and tertiary education is required to comprehend SMOG scores of 13 and above. To calculate the score the number of words containing three or more syllables and a total of 30 sentences is used. Ten sequential sentences from the beginning, 10 sentences in the middle and 10 sentences close to the end of the pamphlet are selected. A sentence is defined as a string of words punctuated with a period, exclamation point, or question mark. The EQIP evaluates the quality of printed information material [13]. This 20-item questionnaire consists of three categories of analysis, namely content, structure and identification (see Table 1). Every question on the EQIP is rated on a four point rating scale (‘yes’, ‘partly’, ‘no’, ‘does not apply’). The total overall score is then calculated and averaged in order to produce a quality score and recommendations (see Table 2).

Table 1 EQIP: description of categories. Category

Description

Content analysis

This section provides information regarding the relevance, level of detail and any missing information from the leaflets. Evaluates whether the information pamphlets includes the following information: description of hearing and hearing related matters, appropriate treatment plan and the consequences of hearing difficulties. Evaluates whether the information within the pamphlets is evidence-based, logical and appropriate for the targeted audience, frequently updated, categorised, contain illustrations and a reference list. This section provides information regarding the identification of the pamphlets and evaluates the publication date of the leaflets, logo and the name of the sponsors.

Structure analysis Identification analysis

Table 2 EQIP quality scores. Rating

Score range in percentage

Recommendations

High quality Good quality Some serious problems Severe problems

75–100% 50–74% 25–49% 0–24%

Continue to provide the pamphlet however review the pamphlet in 2–3 years. Continue to provide the pamphlet however review the pamphlet in 1–2 years. Begin the review process now and replace the pamphlets within 6–12 months (from the evaluation). Remove the pamphlet from circulation immediately.

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Table 4 EQIP quality scores.

2.3. Ethical considerations Procedures followed were in accordance with the World Medical Association’s Declaration of Helsinki [15]. Ethical approval for the study was obtained from the University Research Ethics Committee. Written informed consent was obtained from the Gauteng Department of Health to collect information pamphlets from hospitals. Participants were fully informed of the nature of the study, assured of confidentiality and their right to withdraw from the study at any time, without any negative consequences. 2.4. Data analysis Descriptive statistics were used to analyse the data. Measures of central tendency (e.g. mean) have been employed for the SMOG and EQIP. Inter-rater reliability was determined and were 0.67 for the EQIP and 0.8 for the SMOG.

3. Results 3.1. Availability of information pamphlets on hearing and hearing loss in children The findings of the telephonic survey indicate that of the 26 public health hospitals in Gauteng surveyed, 73% (n1 = 19) offer information pamphlets on hearing and hearing loss in children. The availability of information pamphlets varied. A number of public health sector hospitals provided more than one type of information pamphlet on hearing and hearing loss, however not all the pamphlets met the inclusion criteria. Four types of information pamphlets were supplied, namely those developed by a hearing aid company, the Gauteng Speech Therapy and Audiology marketing group, non-profit organisations and individual hospital audiology departments. The majority of information pamphlets included a description of hearing and hearing loss, information on the consequences having a hearing loss and available treatment options. However, the methods used to assess hearing and quality of life issues (e.g. effects of hearing loss on functioning at home, school and within social settings) were lacking in most of the pamphlets. 3.2. Readability and quality of information pamphlets on hearing and hearing loss in children A total of 21 pamphlets were analysed. The readability level scores of the information pamphlets as calculated with the SMOG ranged from grade 4 to grade 10 (see Table 3). The majority of pamphlets were scored at a grade 6 and 7 reading level. The quality of the information pamphlets, as determined by the EQIP, can be rated as ‘high quality’, ‘good quality’, presenting with

Table 3 SMOG readability scores. SMOG readability scores School level Primary school

High school

Grade level

Total, n (%)

EQIP quality scores Quality

Score range

Total, n (%)

High Good Some serious problems Severe problems

75–100% 50–74% 25–49% 0–24%

0 7 14 0

‘some serious problems’ or presenting with ‘severe problems’ depending on the calculated quality score [13]. The calculated scores of the information pamphlets in the current study ranged from 36% to 73% (Table 4). None of the information pamphlets analysed fell into the category of presenting with ‘severe problems’. The majority of the information pamphlets were rated as presenting with ‘‘some serious problems’’ with the quality as it lacked structure and scored poorly in the identification category. 4. Discussion 4.1. Availability Information pamphlets on hearing and hearing loss are not available at all public health hospitals in the Gauteng Province, despite the drive to implement EHDI in South Africa. It is postulated that the limited budget for the development and printing of health information material within the public health sector is a major barrier in the availability of pamphlets on hearing and hearing loss in children. In addition, the limited number of audiologists employed in the South African public health care sector negatively impact on outcomes for infants and children with hearing loss. 4.2. Readability Recent reports suggest that medical information published for the South African market should be at a fourth-grade reading level for ease of understanding [16]. It is evident from the current research that the 95% of the information pamphlets analysed surpass the expected grade four reading level. Of these, 24.5% were at a high school reading level (ranging from grades 8 to 11). These pamphlets were available at 26% of the hospitals included in the study. The pamphlets at a primary school reading level (grades 4–7) were available at 84% of the hospitals. Parental satisfaction towards educational material, irrespective of their health literacy level, is for materials written using plain and simple language. This was confirmed in a study on polio information pamphlets, where the readability of two pamphlets (one written at a grade 6 level and the other grade 10) was rated by consumers [17]. It was found that all individuals, regardless of level of reading ability, favoured the grade six level pamphlet as it was written using simpler language.

No. of hospitals available at (n; %)

4.3. Quality The quality of the information pamphlets (in terms of content, structure and identification) on hearing and hearing loss was determined using the EQIP. Pamphlets in the current study were rated as either of a ‘good’ quality or presented with ‘some serious problems’. The reasons why pamphlets were rated as presenting with ‘some serious problems’ included the: (i) inappropriate use of pictures and illustrations; (ii) poor flow of information; (iii) use of medical jargon that were not explained; (iv) quality of life issues

4 5 6 7

1 2 7 6

(5) (9.5) (33) (28)

1 2 10 12

(5) (11) (53) (63)

8 9 10 11

2 1 1 1

(9.5) (5) (5) (5)

2 1 1 2

(11) (5) (5) (11)

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(e.g. the effects of hearing loss in a variety of life areas) was not addressed; and (v) no information was provided of who developed the pamphlets and when it was published. It is thus recommended that based on the EQIP quality scores obtained, these 14 information pamphlets be reviewed, republished and distributed within 6–12 months. Guidelines for the development of information pamphlets on hearing and hearing loss in children in South Africa were developed by the authors based on the findings of the current study (see Appendix). This guideline addresses the readability level (i.e. grade four), the structure of the pamphlets, as well the proposed content of thereof.

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5. Conclusion It is important for policy makers in South Africa to develop and propose guidelines for printed health care information on hearing and hearing loss in children, as access to good quality printed information will positively impact on the choices made by parents/ caregivers of children that affects these innocent children’s quality of life. Conflict of interest None.

Appendix Guidelines for the development of information pamphlets on hearing and hearing loss in children Category

Guidelines

Readability level

Information presented in the pamphlet should be at a grade 4 readability level (can be assessed with the SMOG)  Use everyday language to explain unusual/medical words/abbreviations.  Use short sentences of less than 15 words

Structure

Pamphlet should be A5 in size. Pamphlets should have a white background with black print. Information should be presented in columns to separate information. Headings should be:  Consistent throughout the pamphlet  Printed in a different colour (but not yellow).  Printed in bold and larger font if the pamphlet is in black and white If pictures are included it should be:  Meaningful  Relevant  Culturally relevant (for the target audience)  Realistic (do not use abstract symbols)  Placed close to the text that relate to the picture If diagrams are included it should be:  Placed close to the text that relate to the diagram  Adequate size to make content readable Should have a named space for making notes. Should contain relevant contact details of the department. Should contain the name of person/department that produced the pamphlet. Should contain the date it was produced.

Content

Information should be presented in a logical order. Introduction should introduce the reader to the topic of the pamphlet. Should personally address the reader. Should be presented in respectful tone. For hearing and hearing loss related information pamphlets should include:  Description of hearing  Description of hearing loss  Consequences of having a hearing loss  Description of methods used to assess hearing (as well as risks and benefits)  Appropriate treatment options  Quality of life issues (i.e. the effects on hearing loss at home, school and social settings) Should contain details of other sources of information (e.g. reference list).

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[7] S. Moodley, C. Sto¨rbeck, The role of the neonatal nurse in early hearing detection and intervention in South Africa, Prof Nurs Today 16 (4) (2012) 28–31. [8] R. Winston, J. Hoffman, Tracking, reporting and follow-up, in: L.R. Schmeltz (Ed.), The NCHAM e-book: a resource guide for early hearing detection and intervention (EDHI), NCHAM, Utah State University, 2012, pp. 3.1–3.18. [9] K. Khoza-Shangase, J. Barrat, J.B. Jonosky, Protocols for early audiological intervention services: views from early intervention practitioners in a developing country, S Afr J Child Health 4 (4) (2010) 100–105. [10] E. Fitzpatrick, E. Agus, A. Durieux-Smith, I.D. Graham, Parents’ needs following identification of childhood hearing loss, Am J Audiol 17 (1) (2008) 38–49. [11] Statistics South Africa, Provincial Portfolio Gauteng, Statistics South Africa, Pretoria, 2004. [12] G.H. McLaughlin, SMOG grading a new readability formula, J Read 12 (8) (1969) 639–646. [13] B. Moult, L.S. Franck, H. Brady, Ensuring quality information for patients: development and preliminary validation of a new instrument to improve the quality of written health care information, Health Expect 7 (2) (2004) 165–175.

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[14] N. Cotugna, C.E. Vickery, K.M. Carpenter-Haefele, Evaluation of literacy level of patient education pages in health-related journals, J Community Health 30 (3) (2005) 213–219. [15] World Medical Association, Declaration of Helsinki: ethical principles for medical research involving human subjects, 2013 http://www.wma.net/en/30publications/10policies/b3/index.html [updated October 2008/accessed 15.03.15].

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Quality and readability of information pamphlets on hearing and paediatric hearing loss in the Gauteng Province, South Africa.

The implementation of early hearing detection and intervention (EHDI) programmes is necessary in order to facilitate the early identification of heari...
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