Research in Social and Administrative Pharmacy 11 (2015) 545–559

Original Research

Exploring culturally and linguistically diverse consumer needs in relation to medicines use and health information within the pharmacy setting Annim Mohammad, B.Pharm. (Hons.)a, Bandana Saini, B.Pharm., M.Pharm., M.B.A., PhD.b, Betty Bouad Chaar, Ph.D., M.H.L., B.Pharm.c,* a Faculty of Pharmacy, University of Sydney, Rm N401, Badham Building No A16, NSW 2006, Australia Faculty of Pharmacy, University of Sydney, Rm S303, Pharmacy and Bank Building No A15, NSW 2006, Australia c Faculty of Pharmacy, University of Sydney, Room 410, Pharmacy and Bank Building A15, NSW 2006, Australia

b

Abstract Background: Low health literacy may result in adverse health outcomes for patients and is a problem faced by countries with multi-ethnic demography. For those of culturally and linguistically diverse (CALD) backgrounds, this problem can be compounded by language barriers such as low English proficiency (LEP). The pharmacy is often the last point of health-care provider contact before patients begin taking their medicines and the first point of care for minor ailments. There is a paucity of data exploring or establishing the needs of this population with respect to general medicine use/health information and pharmacist assistance. Objective: This study aimed to investigate the needs of CALD Australians with low or negligible English proficiency, specifically in regards to their understanding of health and medicines and the role of pharmacy in achieving best medicine use outcomes for this population. Methods: A qualitative method was employed. Semi-structured interviews were conducted with individuals of CALD backgrounds with a self-reported low or negligible English proficiency. The interviews explored past experiences with medicines use and interaction with health care professionals. A grounded theory approach with the method of constant comparison was undertaken for analyzing the data. Interviews were conducted until there was a saturation of themes. Results: Thirty-one interviews were conducted, and data analyses identified themes relating to medicine use of CALD community members which were broadly categorized into: (1) health information, (2) interactions with health care professionals, (3) social networks and (4) perceptions and beliefs influencing health-related behavior. Conclusions: In CALD communities there are significant barriers to patient understanding and optimal use of medicines. There is significant potential for pharmacy to facilitate in addressing these issues as currently pharmacy is largely playing the role of dispenser of medicines. Whilst timely access of medicines is being

* Corresponding author. Tel.: þ61 2 9036 7101. E-mail address: [email protected] (B.B. Chaar). 1551-7411/$ - see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.sapharm.2014.11.002

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ensured, there seems to be ample room for improvement in terms of pharmacy’s role in facilitating appropriate and efficacious use of medicines with such CALD community members. Ó 2015 Elsevier Inc. All rights reserved. Keywords: Health literacy; Culturally and linguistically diverse patients; Pharmacy; Low English proficiency

Introduction Health literacy is the ability to access, understand and use basic health information, including being able to navigate health services and to make informed health decisions.1 It is dependent on social and individual factors1 and may be categorized into three levels: functional, interactive and critical.2–4 Functional health literacy relates to an individual’s level of basic knowledge and skills that allows adherence to professionals’ advice.3 Interactive health literacy relates to the development and use of more advanced cognitive skills relating to a more active patient role.3 Critical health literacy relates to a person’s ability to critically analyze and use information to exert greater control in health care decision making and wider community advocacy.3–6 Constructs underlying these definitions indicate that health literacy is a multi-faceted concept; even obtaining the simplest level of health literacy requires an individual to have knowledge and skills that include reading, writing and numeracy, listening to get information, oral and visual communication, problem solving and decision-making.7 Thus, there have been a variety of efforts to mitigate the effects of low health literacy by addressing these various aspects. These include attempts to enhance patient education materials to make them more understandable using graphic and design techniques,8 training of community members to enhance health literacy levels9 and focusing on the role of the health professional in overcoming barriers associated with low health literacy, such as communication and learning style.10,11 A number of studies have demonstrated the negative impact of low health literacy on patient health and on health care system costs, as well as the importance of health literacy for social and economic development that have provided the impetus for this focus.12–14 Low health literacy is associated with a greater likelihood of adverse outcomes,15 less knowledge about health issues, less clarity in patient-provider interaction16 and detrimental effects on essential aspects of health and treatment such as adherence.17–19 Low health

literacy also is associated with a lower ability to interpret health messages, including prescription label instructions, which is of particular concern, as the medicine container label is the most tangible and repeatedly used source for referring to prescription drug instructions by patients.20 Literature indicates that low health literacy is a problem that persists in all communities,21,22 but for those from culturally and linguistically diverse (CALD) backgrounds, this problem can be compounded by language barriers such as low English proficiency (LEP), in countries where English is the official language.20,21 CALD populations, also referred to as “ethnic minorities” in the literature, have been shown to have lower levels of health literacy in comparison to their majority ethnic counterparts.1,23 CALD members of the community with limited health literacy and LEP are considered to be among the most vulnerable to suboptimal medicine use and health service utilization.24 Linguistic and cultural barriers also negatively affect patient satisfaction. It has been shown that in English speaking countries patients whose primary language is English are more satisfied with their care in general than patients who have a non-English primary language.25 CALD communities are known to need unique and personalized assistance to access and navigate the health care system and understand health information, to be able to make informed decisions and manage their health.26,27 In Australia, where English is the official language, the Adult Literacy and Life skills survey (ALLS) conducted in 2006, revealed that of those born overseas in a mainly non-English speaking country, only 26% achieved at the least the minimum score required for adequate health literacy.21 Thus, a significant proportion of first generation Australians born in non-English speaking countries appear to have inadequate health literacy levels. This is particularly concerning as a recent 2011 National Australian Census reveals Australia to be among the most multi-ethnic of nations in the world with many CALD populations.28 For instance, 31% of the population of the state of

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New South Wales reported being born overseas and 28% reported speaking a language other than English at home.29 Comparable to Australia, countries around the world, such as the UK, are becoming increasingly ethnically diverse, due to open immigration policies and a healthy birthrate of ethnic minority populations.30,31 CALD community members have been the focus of various health literacy-related studies such as cultural competency training for health care professionals32 and tailored disease-specific education interventions.33 However, a majority of these studies have been conducted in a nonpharmacy setting34 and do not involve enhancing the interaction of pharmacists so that they are better able to assist such members of the community. There is a relative paucity of literature on initiatives that are uniquely based in the pharmacy setting that aim to address aspects of the overarching concept that is health literacy of CALD community members. Likewise, there is a paucity of exploratory studies that have investigated CALD community member interaction specifically with pharmacists to identify ways to ensure the effective dissemination of professional pharmacist services to such members of the community. This is a significant gap, as pharmacists are frequently accessed health care providers, who are in a key position to communicate critical information with patients which may consequently improve health and medicine knowledge. In fact, a report released in 2011 revealed that people in Australia visit a community pharmacy on average fourteen times a year, as compared to once a year to their doctor.35 A considerable amount of health information changes hands in the pharmacy setting and it is often the last point of contact with a health care provider before patients take their medicine. The pharmacy setting is uniquely placed to enhance patient understanding of health and medicines.36 Additionally, an integral requirement of Australia’s National Medicines Policy is the Quality Use of Medicines, and pharmacists are essential to achieving this.37 The Australian Commission on Safety and Quality in Health Care undertook a Health Literacy Stocktake that aimed to collect information on the range of initiatives being undertaken in Australia to address issues of low health literacy.38 This exercise showcased only one intervention that involved utilization of pharmacists to enhance health literacy levels of community members within Australia.38 Whilst the Stocktake was undertaken by the Commission from early

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December 2011 to 30 March 2012 and may not be comprehensive, to our knowledge also, there have been no Australian studies published in the literature to date that have aimed to enhance health literacy levels of CALD community members uniquely utilizing the pharmacy space. The majority of the pharmacist-led or pharmacy housed research initiatives aimed at enhancing CALD community member health literacy levels have been undertaken in the US. These include the development of multilingual prescription labels39 and training pharmacy students on cultural competency40 and health literacy.41 The use of pictograms to convey medication instructions to such populations has also been found to be beneficial in South Africa.42 Furthermore, in Australia, resources are available to facilitate health practitioners’ interaction with people of various CALD backgrounds, so that there is minimal compromise to patient health outcomes. Many of these resources focus on using ‘language’ as a marker of ethnicity. Some examples are the National Translation and Interpreting Service (TIS),43 various online resources44,45 and community medicines education sessions by the National Prescribing Service (NPS).45 However, despite the availability of these various resources, there have been no studies undertaken exploring their utilization or uptake, or on the views of CALD community members about them. As such, this study aimed to explore the needs of Australian CALD populations in regards to their medicines use, health information and utilization of pharmacist expertise in this context. Methods This was an exploratory study in which qualitative methods involving interviews until thematic saturation were utilized. Ethics approval was acquired from the University of Sydney’s Human Research Ethics Committee (Project number 2012/2855). Sampling strategy The sampling strategy comprised a two part process: sampling of participant recruitment sites and recruitment of participants. Sampling of recruitment sites Pharmacists at two community pharmacies (North-West Sydney and South-East Sydney) and community workers at three community centers (South-West Sydney and South-East Sydney) were

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approached to assist with recruitment. Community centers are council-run locations where members of a community tend to gather for group activities, social support, public information, and other purposes. These recruitment sites were selected from parts of Sydney that were identified as being populated by people of diverse backgrounds based on languages spoken and where there was a high number of people who reported having low English proficiency in the 2011 Census, as indicated by the NSW Social Health Atlas46 and the Australian Bureau of Statistics.47 This was to ensure participants of various linguistic and cultural backgrounds were recruited and so that a variety of demographic and health care experience characteristics were represented. The variety and quantity of primary languages spoken in a particular area was taken to be reflective of the CALD richness of the area. This approach was undertaken to allow confidence in the robustness of thematic induction from the data.48,49 An invitation to participate was mailed to a randomized selection of pharmacies and community centers in those areas to ensure appropriate ground was covered, detailing what was involved and the inclusion criteria for the participants. Details of the pharmacies were obtained from the Pharmacy Council of NSW pharmacy register50 and of the community centers by a simple web search. There was no incentive for those that facilitated the recruitment of participants. Participant sampling The pharmacists and community workers recruited were provided with a poster to display in their places of work that promoted the study. The poster comprised of graphics and key words to ensure maximal clarity and understanding. These recruits were then asked to inform potential participants about inclusion criteria and determine whether they met them. If participants met the criteria, they were required to sign a consent form and were informed to contact the primary researcher to arrange a time and place for the interview. Pharmacists and community workers assisted some participants to do this. Others had close family or friends assisting. Participants were given a $10 shopping voucher as a token of appreciation for their time. Participant inclusion criteria comprised:  18 years of age and above.  Spoke a language other than English at home and who was unable to speak English or had

low self-reported English proficiency. Indicators of CALD community members were taken as being language and culture. Low self-reported English proficiency was detected by asking the potential participants a question used by the Australian Bureau of Statistics as a measure of self-reported English proficiency: “Do you consider that you speak English ‘very well,’ ‘well,’ ‘not well’ or ‘not at all’?” Those who replied ‘very well’ or ‘well’ were ineligible to participate in the study.  To elicit insight into the needs of patients of diverse backgrounds and language barriers we sought participants who had experience with interacting with pharmacists and doctors in the past and/or had taken medication at some point, were currently taking medicines or were responsible for someone else’s medicine taking. The answers to these questions were established by translators, community workers or the pharmacists who could speak the potential participant’s primary language. The primary researcher confirmed the meeting of these criteria prior to conducting the interviews. Recruitment and interviews continued until data saturation was reached according to standard qualitative research methods.48 The interview Semi-structured interviews were conducted in English in conjunction with an accredited interpreter or native language speaker as deemed necessary. For interviewees that were identified by the primary researcher and recruiters as not speaking English at all or who self – identified a need to have an interpreter, either an accredited interpreter was arranged for or, in cases where interpreters were unavailable at short notice, services of carers/family members of participants as informal interpreters were utilized. In such cases where a non-accredited interpreter was used, prior to conducting the interview, the primary researcher engaged in a brief conversation with the informal interpreter about the study, and ensured that the interpreter could comprehend and respond reasonably. During the interview, the primary researcher also validated responses by repetition of some questions, confirmation with the participant as best as possible, reiteration of their responses and noting body language. When interpreters were not deemed necessary by the participants, the primary researcher

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repeated questions, simplified language, slowed the pace of articulation and reiterated responses with the specific purpose of confirming participants’ understanding and her understanding within reasonable limits during the interview. Also, prior to interview conduct, the primary researcher engaged in a brief conversation with the participant about the study, and ensured that there was reasonable language proficiency and comprehension in order for the interview to proceed. The interview guide (Appendix 1) was developed based on literature pertaining to aims of the study in terms of CALD community members and health literacy, interactions with health care professionals particularly pharmacists and informed decision making.3,51,52 The guide explored in particular the following domains: understanding of health and medicines (functional health literacy) (Q1), language and cultural influences (Q4–5), aids to enhance medicine use (Q1, 3) and pharmacy’s role in assisting CALD members of the community (Q2, 3, 6, 7, 8). Each question was layered with prompts to allow deeper exploration of issues, such as past experiences with medicines use and interacting with health care professionals (interactive health literacy). The interview guide was piloted with two consumers, pharmacists, CALD people known to the investigators and researchers in this field, to establish face validity, relevance and feasibility. All interviews were conducted by the primary researcher, who was previously trained in qualitative research methods, for purposes of consistency of the interviewing process. Interviews were conducted at a mutually convenient location. After reading translated participant information statements and signing the consent form allowing us to voice record, interviews were conducted on average taking half an hour. There are no pre-set rules or formulas to predict sample sizes required to achieve thematic saturation in qualitative interviews. Recommended sample size that may be needed for knowledge saturation to occur in qualitative research interviews varies between 5 and 30.53 Ultimately immersion in collected data is required to judge whether consecutive interviews have very few or no new data emerging.54 The sample size may also depend on other criteria such as the heterogeneity of the population; the inclusion criteria; types of data collection methods use; the budget and resources available.55,56 Interviews were conducted till thematic saturation was reached, that is, the point where no new themes were being

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revealed by the iterative and cyclical process of data collection and analysis.48 The primary researcher read the transcripts twice to ensure immersion in data so that correct identification of point of saturation was made. Even though participants had a shared experience, this study’s sample was not likely to be homogenous, thus it was anticipated that a relatively larger sample of 25–30 interviews would be required to reach saturation. Data management and analysis The interviews were de-identified, audio-taped and transcribed verbatim by the primary researcher. The transcripts were thematically analyzed with the assistance of the software data management package Nvivo 10 (2013; Australia). A grounded theory approach with a constant comparison method was undertaken to analyze the qualitative data.57 After the initial few interviews were completed, preliminary reading of transcripts and open coding of emergent themes was conducted. At the next round of interview completion, all transcripts were read again, new ones open-coded, and previously coded themes were compared or collapsed with new emerging themes. Transcripts were read at least twice by the primary researcher and another member of the research team to ensure immersion in data. This iterative process was undertaken with subsequent interviews, and again at the end, to associate concepts/codes meaningfully, in order to construct cohesive themes. This process also facilitated identification of data saturation.57 To verify the analysis, the research team met formally on several occasions to discuss themes identified in the iterative process, until consensus was achieved amongst all members regarding the naming, context and content of the emerging themes. Results A total of 31 interviews were conducted. The sample size was driven by data saturation primarily.56 Data saturation was reached after 27 interviews. The response rate is unknown as the recruitment was not done by the primary researcher and the recruiters were not required to note down how many people declined or were approached. Ten interviews were conducted with an accredited interpreter in place, and five were conducted with the assistance of a carer or family member of the participant who helped with translation.

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Table 1 Background information gathered and the number of participants for each in brackets Language spoken at home Arabic (2) Greek (1) Bengali (4) Hindi/Punjabi (4) Czech (1) Indonesian (1) Filipino (1) Malay (1) Years of experience with doctor consults in Australia No years stated (4) 2–6 (5) Gender Male (11) Female (20) Age in years 25–35 (4) 35–45 (9) 55–65 (8)

The remaining participants, despite having a low English proficiency, were able to answer and comprehend the interview questions. All were born in a non-English speaking country and were first generation Australians. Participant information is reported below in Table 1. Participant demography covered a range of ages, primary languages and experience with health care professionals. Interviews were on average 30 min in duration. The majority of participants in this sample could describe the symptoms for which they were taking their medicines. Most, however, were unable to identify their medicine by its name or state what condition (i.e. a medical diagnoses) they were taking their medicine/s for. The thematic analysis of the qualitative data identified four major themes relating to medicine use of CALD community members and:

Maltese (1) Mandarin/Cantonese (10) Maori (1) Spanish (4) 10–20 (16)

30 years or more (6)

65þ (10)

written information relating to their medicine and condition in their native language. Some participants used a bilingual dictionary to translate words as needed. The use of pictograms was also valuable in overcoming language barriers. Visuals were reported to be quite useful for explanations.

Health information

Sources of health information There appeared to be a lack of awareness amongst the participants in regards to their current medicines and the relevant health information that was available. Participants relied on their health care professional for information and information source referral. In instances where this was not provided, they simply assumed that there was no language-specific information available. Other channels through which participants obtained health information included TV shows (including those broadcast from overseas) and health books. Contrastingly, the Internet was seldom used by majority of participants as a source of health information. This was due to participants not having computer operational skills and lack of confidence in the credibility of the information that may be found online. However, the few participants who were able to use the Internet only used it to verify information given by other health care professionals.

Usefulness of available health information Participants described being overwhelmed and at times confused by the content contained in medicine information leaflets, especially relating to side effects. There was perceived over-provision of some information in the written material that was available. Health information brochures in various languages were deemed useful in enhancing understanding. In fact, most participants preferred

Understanding medicine-related instructions Most participants felt that having multilingual labels on medicines would allow clear comprehension of the prescription label. When prompted about what steps they were currently taking to ensure understanding, some participants reported they were writing down the name of the medicine in their own language for easy reference on the label already. Some pharmacists were reported to be doing this too. To counter the inability to read

i. health information, ii. interactions with health care professionals, iii. social networks and, iv. perceptions and beliefs influencing healthrelated behavior Data are presented in Table 2 and a corresponding commentary of results is presented below.

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Table 2 Themes and supporting quotations from the participants. Where a participant quote is clarified for context, square brackets have been used (3.1) Theme 1: health information 3.1.1. Usefulness of available health information ‘If I go by the printed information, there were so many side effects of this medicine, the more you read about them the more you get confused’ (Participant 7). ‘ . It would be convenient. I prefer Chinese and English version [of medicine information] come together’ (Participant 24). ‘Because the chart has pictures and has both Chinese and English, that’s how I communicate with them’ (Participant 26). ‘She printed some exercises so my mum just look[ed] at the picture and just follow[ed] the picture’ (Participant 10). 3.1.2 Sources of health information ‘I actually don’t know what sort of health information I can get. So I don’t know what to ask’ (Participant 24). ‘I never use it. I am no good at computer because in my country of birth you never have these things’ (Participant 2). ‘No Internet use . I could be misleading myself’ (Participant 14). ‘I had too many questions to [ask] the pharmacist about this tablet and then I went on the Internet to search for it whether they are telling me the correct thing or not’ (Participant 22). 3.1.3 Understanding medicine-related instructions ‘It would be very helpful, if a Chinese sticker could be put on top of the English package but actually that’s what my pharmacist did for me anyway because at the beginning we didn’t understand so the pharmacist wrote down all the information in Chinese on a piece of paper on the package; for example before meal, after meal, [this made] everything clear’ (Participant 27). ‘Sometimes instruction is better if they explain to me before or after food in my language . [then] it is easy for me’ (Participant 23). ‘It should be more simpler English, for example it says take 2 tablets a day, then in the bracket should be 1 in the morning and 1 in the afternoon . because it is a bit confusing when it says 2 a day, I could take maybe 2 together ’ (Participant 22). ‘Everything’s in a pill box so it’s marked out for the 7 days and I just collect it all’ (Participant 18). ‘People who have diabetes always have problem with their eyesight. Better if there is large writing’ (Participant 10). 3.1.4 Differentiation between medicines ‘Not from the label but from the box’ (Participant 17). ‘They [the brand names] all have English names and all start with different kind of letters, so I will remember H for that . But I never learnt English it is just the letter [i.e. the shape of the letter]’ (Participant 28). ‘They change the carton sometimes, but the name is the same. No I don’t rely on the box because it changes’ (Participant 3). ‘Sometimes color and labeling are totally different- looks like it’s not the same tablet (when in fact it is)’ (Participant 23). ‘I try to recognize the package . That’s the reason why I absolutely hate it when they get me to change brands’ (Participant 30). ‘I don’t know if the cheap one [i.e. the generic medicine] is reliable or good’ (Participant 24). (3.2) Theme 2: interaction with health care professionals 3.2.1 Linguistic sanguinity and multilingual skill desirability ‘I don’t know anything about the label. I just purchase the medication and that’s it’ (Participant 24). ‘The only information she gets is from the doctor’ (Participant 12). ‘Doctors all speak in Mandarin so that part is fine, but pharmacists can’t. If the pharmacist can speak Mandarin or do anything that can help [to] understand better [that] would be helpful’ (Participant 16). ‘No not much (understanding) because doctors don’t tell you much’ (Participant 2). ‘They (pharmacists) should take extra time and explain in easy English’ (Participant 23). ‘I have never been to doctors and pharmacists who are Westerners, in that clinic [i.e. the one visited by the participant] all the doctors and staff [have] the same language and cultural background [so] they are able to understand us’ (Participant 27). ‘The pharmacy- well, because they don’t speak the language we hardly ask them for help’ (Participant 29). ‘I can understand the language, the problem is doctor will have lots of terminology for those words and I won’t be able to understand about those diseases and medicines’ (Participant 26). (continued on next page)

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Table 2 (continued ) 3.2.2. Hierarchical social relationships ‘Pharmacist is shop keeper. I don’t expect from them any help . I think that’s not their job . . They are sales man. They make money and give me medicine . I trust the doctor’ (Participant 20). ‘I feel why should the doctor ask me-doctor should know better instead of asking me . they shouldn’t ask us . they know better than us’ (Participant 19). (3.3) Theme 3: social networks ‘If I had any questions I would just ask [my] daughter because my husband and I don’t really speak English so we can’t communicate [with others]’ (Participant 27). ‘They ask all the time if we need (interpreters) especially if we are admitted in hospital’ (Participant 3). (3.4) Theme 4: perceptions and beliefs influencing health related behavior ‘In my country they always said if there is a bleeding cut, I shouldn’t put any water but over here they say before I put any medicine or bandage I should wash the area with clean water . it’s culturally different, totally opposite’ (Participant 23). ‘Well I think the Chinese community has very different kinds of habits . For example when we take medicine we use lukewarm water but when I was hospitalized the nurses were all Westerners and gave me medication with tap water; I found it really hard to get used to it’ (Participant 26). ‘I believe cheap things are no good’ (Participant 16). ‘It all depends on where it was made . Any developing country you got to be careful, even if it’s generic . It might not be pure . and anyway less medicines, less side effects’ (Participant 7).

the prescription label, most participants relied on routine and memory aids to ensure they took their medicine properly. Participants identified clear needs and offered suggestions to improve medication label comprehensibility. For example, instructions relating to the number of times to consume a medicine in a day and in relation to meal-times were requested by participants. Plain language was requested to be used on prescription labels as well. Labels with a large font, especially for people with vision impairment, were another suggestion. Depending on literacy levels, information conveyed verbally was more desirable for some. Differentiation between medicines In line with the above, participants recognized their prescription medicine and what it was for, based on the package appearance or the first alphabetical letter of the brand name, as opposed to the label or the full name of the medicine. They also reported carrying the package/s of medicines for identification purposes. However, it was recognized that identification based on package appearance may be problematic. This latter issue was reported by some participants, particularly where more than one brand of a medicine was available with different packaging. Furthermore, participants found the different brand names also to be a cause of confusion. It was requested that the name of the active

ingredient be written larger for identification purposes across different generics. Lack of awareness of generic brands was also an issue. Interaction with health care professionals Linguistic sanguinity and multilingual skill desirability Inability to read English labels meant there was a heavy reliance on listening to the doctor or the pharmacist who could speak the participant’s first language, to know how to take medicines as opposed to getting this information from the medicine label. Most participants emphasized the need to overcome the communication barrier that existed between them and pharmacists who did not speak their language of origin. This was particularly important as participants recognized that doctors at times could be time-poor or not explain things as clearly as desired. However, participants also suggested that pharmacists should spend more time than they currently did, with the patient. In addition to language, the manner in which health care professionals communicated was a key determinant of which health care professionals participants felt most comfortable with and understood. Even if the communication was in simple English, participants preferred a health care professional whose ethnic origin was from a nonEnglish speaking culture over a health professional who only knew English. The words ‘Westerner’

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and ‘non-Westerner’ were used by participants to make this distinction. This also determined who they sought help from and with whom participants had a long-term patient-provider relationship. Speaking in a plain manner was deemed important by participants for health care professionals, even those who could speak their language of origin, as jargon was an issue in being able to comprehend what was being said. Hierarchical social relationships Doctors were perceived to be the main source of information by majority of participants. This is despite the recognition that at times doctors could be time-poor. Participants also trusted the doctor more than the pharmacist, due to the differing credentials and perceptions of their scope of practice. Some participants preferred the doctor to make health decisions for them as they felt the doctor was the best equipped to make such decisions. It can be speculated that participants did not read the prescription label placed by the pharmacist due to a combination of their inability to fully comprehend it, and their reliance on their doctor’s verbal advice rather than enacting their own autonomy. Social networks Family members and friends were a means of informational support for majority of participants. They helped in obtaining information and were sometimes a source of information themselves. Where such social support was not available, participants reported being offered interpreters in hospital settings, which they found to be very helpful. Perceptions and beliefs influencing health related behavior Perceptions of medicines influenced participant health-related behavior. Concern for side effects was a deterrent to medicine-taking for participants. Previous experiences of participants influenced the approaches they took in regards to courses of action in certain health-related situations. Cultural idiosyncrasies also affected medicinetaking and comfort of participants. Participant 26 explained how it took a while for the nurses to understand why he wouldn’t take his medicines, as language was a barrier. It wasn’t until they brought a pictogram that he was able to use it to request the lukewarm water to take the medicine being given. This also highlighted how cultural

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nuances can be imperceptible to health care professionals of a different culture. Some participants had the perception that if a medicine cost more, it was of better quality and hence preferred the original brand over the generic brand. Participants were also found to pass judgment about a generic medicine based on where it was manufactured.

Discussion In aiming to address issues in culturally and linguistically diverse communities, the need to seek input from the very members who make up such communities is widely recognized.26,39,58 This study has uniquely identified contemporary issues relating to the needs of CALD community members within the pharmacy setting. Whilst some findings mirror what has already been reported in the international literature, this study is a valuable contribution toward the most current issues relating to health literacy and CALD communities within the context of Australian pharmacy practice.4,58 The findings are envisioned to serve as a springboard for future studies and targeted interventions regarding CALD community members and provision of pharmacy services, ensuring fair and equitable access to health care and informed decision making for all. Navigating medicine use was a major issue apparent from the responses. Participants identified the need for more simple language to be utilized during communication. This is similar to many studies in the literature that document the improvement in patient-provider interaction, patient understanding and adherence with the use of less medical jargon and communication in simple language.59–61 Due to communication and linguistic barriers, participants also visited doctors who could speak their first language and identified them to be their primary source of health information.62 Addressing health professional proficiency is one way to address this issue of communication, namely by means of educating and training health professionals, particularly pharmacists, about issues relating to health literacy. Education can also be used to enhance awareness and uptake of approaches documented in the literature, such as the ‘Universal Precautions’63 recommended by the Agency for Healthcare Research and Quality, that health professionals can apply to their practice to

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better cater for groups considered to be “at risk” of low health literacy.40,64,65 Such educational measures have also been recognized as an integral part of addressing low health literacy by the Australian Commission on Safety and Quality in Health Care58 and the Australian Pharmacy Council.66 With respect to pharmacy, the new Australian Pharmacy Council accreditation guidelines require ‘cultural sensitivity’ and health literacy issues be included in the curriculum of pharmacy schools from the beginning of 2014.66 However, there is little experience in introducing this in curricula around the country and effective teaching methods are yet to be established. Direction may be taken from the Agency for Healthcare Research and Quality in the US that have curricular modules available online to assist pharmacy faculties integrate health literacy education into their courses.41 The Centers for Disease Control and Prevention also have information and various tools available online to assist organizations to improve health literacy and public health67 that may be valuable in the development of health literacy curricular for Australian Pharmacy faculties. Furthermore, the code of conduct for pharmacists published by the Australian Health Practitioner Regulation Agency (AHPRA) online stipulates that effective communication with patients involves an awareness of and taking into account health literacy issues, adjusting one’s communication in response “and having knowledge of, respect for and sensitivity towards the cultural needs and background of the community practitioners serve, including those of Aboriginal and/or Torres Strait Islander Australians and those from culturally and linguistically diverse backgrounds.”68 Introducing mandatory training in cultural competence may assist pharmacists to better serve CALD members with low health literacy. Pharmacies may also conduct an audit of literacy-relevant practices and see how they fare with what is recommended in terms of best practice for dealing with patients with low health literacy.69 Provided the barriers are addressed that effect adoption of such tools, it can be a useful step in the direction of ensuring low health literate individuals such as CALD community members are best assisted.70 Increasing awareness of the availability of multilingual health information amongst health professionals, so that they may provide improved services to CALD patients, may also be beneficial.26 This would probably ameliorate CALD

member reliance on social networks and other means of health information, such as television programs aired from overseas. CALD community members tend to seek alternative sources of information when accessible, formal sources of information are unavailable or perceived to be so, and this can be of particular concern as the quality and accuracy of the information obtained may be questionable.71 Pharmacists can potentially direct CALD members to more reliable multilingual information available locally such as those mentioned in the introduction. Providing information in the patients’ native language is useful in improving knowledge relating to illness and medications.72 However, there is a need to first ascertain whether pharmacists are themselves aware of the availability of such resources. As a majority of the multilingual health information is available online and CALD community members with a low English proficiency are often not computer literate, this is crucial. Multilingual staff and health professionals were identified as being beneficial in fostering understanding of medicines and health.73,74 Multilingual prescription labels tailored to patients’ needs51 were also identified as a measure that pharmacy could uniquely implement to facilitate this understanding. Studies have shown that the use of dual language labels customized to the specific needs of the patient62,75,76 or incorporation of pictograms77,78 onto prescription labeling may enhance patient understanding and increase comprehensibility of medicine instructions. This is another potential avenue through which Australian pharmacists may more readily engage CALD members with low functional health literacy levels. Research into the capabilities of existing dispensing software and wording of medicine instructions needs to be undertaken. Simplifying instructions even in the majority official language has been shown to enhance patient understanding.79,80 Enhancing medicine labels via these means may also address the confusion surrounding generic medicines62,81 and hence ensure patient safety and compliance. Furthermore, participants’ lack of awareness of the professional role82 of the pharmacist as being separate from the retail element of the community pharmacy setting may be due to the lack of interaction between pharmacists and members of CALD communities due to the language barriers that currently exist. Participants also valued the doctor more due to their differing scopes of practice and credentials in comparison to the

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pharmacist. This perception creates an impediment to effectively utilizing the pharmacists’ skill and knowledge, despite their great accessibility in comparison to other health care professionals, and has been found to be the case in many countries.83,84 This highlights the need to increase awareness amongst CALD members of pharmacists’ role in providing holistic health care advice.85 Thus, this study has revealed pertinent issues regarding medicine use and understanding in ethnic minority community members with a low or negligible English proficiency in Australia and their experiences and misconceptions of pharmacy services. Clearly, the problem of low health literacy in CALD communities needs to be tackled via targeted strategies and resources, to overcome exacerbating factors such as language and literacy barriers, and differing cultural perceptions of health and various health professionals. One could suggest that amongst general health literacy issues – “pharmacoliteracy,” in other words, health literacy specifically around medicines and their use, is a specialized area and warrants intensive research. As with any study, there are some limitations and the findings need to be considered in light of these. Whilst qualitative-assurance measures were in place to ensure the credibility of the project,86 caution should be taken when generalizing the findings beyond the study framework. However, as can be seen from the participant information, participants with a variety of ages, ethnic backgrounds and length of time engaging with the Australian health care system were able to be recruited, ensuring a maximum variation in data. Due to the qualitative nature of this study, we were unable to quantify any significant differences between the responses of individuals of one ethnic group compared to another. Also, this study focused on ethnic minority groups in the metropolitan regions of Australia only. Whilst some similarities and differences might be expected elsewhere, the extent to which findings are relevant to CALD population groups in other countries and contexts is unclear. Furthermore, as the recruitment was carried out by pharmacists and community workers on site, an accurate response rate is unknown as the number of people approached and the number that declined were not recorded. However, response rates are far more important and meaningful in quantitative surveys rather than a qualitative method employing a purposive convenience sample such as in this study. Also, due to time constraints, for five participants, informal

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interpreters (family members/caregivers of the participants) had to be used. This may be regarded as a limitation to the study; however, measures were taken to ensure this was of minimal impact to the veracity of the data collected, as described above in the methods section. Given the interviews were conducted by a researcher not known to the participants, and no health care professionals of the participants were present, there was no reason for the acting interpreter to willfully introduce bias. The participants (and interpreters) were aware that the study was intended for research purposes only. Another perceived limitation may be in relation to participants who did not require an interpreter, but had low English proficiency. In this circumstance strict measures were in place to ensure clear understanding of the questions and that responses were within reasonable scope, as described in the methods section above. Conclusion This study’s findings suggest that there are significant barriers to patient understanding and optimal use of medicines in countries with multiethnic populations. There is potential for pharmacy to play a role in addressing functional health literacy issues in CALD communities. Currently, pharmacy’s role in facilitating appropriate and efficacious use of medicines seems to be minimal when dealing with such CALD community members. This is largely due to language barriers that exist and perceptions from CALD community members. Linguistic support was identified as a key patient directed need when interacting with the pharmacist and one that requires addressing to establish and enhance pharmacist-CALD member interaction. Interventions that offer such support need to be designed and tested in pharmacy practice. Examples could include using online translation services and material, translated labels and support from interpreters, all of which should be readily accessible within and uniquely tailored to the pharmacy environment. CALD community members have minimal expectation from the pharmacist in regards to health information provision and assistance. Whilst there are a number of interventions for CALD communities in relation to specific disease states and issues such as that of adherence, there is a paucity of published, first hand, needs analyses of such communities. This study uniquely provided an insight into the needs of CALD members in relation to utilization of pharmacist professional services.

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Appendix 1 Interview guide After greetings, introductions and consent forms signed, the following questions were posed: 1. What is your understanding about your health and the medicines you are taking? (What medicine is used for, understanding of condition/ s, how to take medicines etc) 2. When you get a new medicine does your pharmacist provide you with adequate information/ resources so that you are confident in your understanding about it and how to take it?

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3.

4.

5.

6.

Please reflect on previous experiences and elaborate. How do you feel about the way in which your pharmacist offers his/her professional services to assist you? Please explain. So English is your second language; how does that affect your interaction with doctors and pharmacists? Please explain. Do you find there is a culture clash between the culture in which you have been brought up and the culture in the Australian medical system? Please explain. In the event you need help or information in regards to any aspect of your medicines and health, can you please tell me what you would

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usually do? Why? (Approach health care professionals, family members etc) Please explain. 7. Do you find you are able to make informed decisions relating to your health and medicines? Please explain. 8. What are some things you would like to see changed in the pharmacy setting so as to better cater to your health and medicine-related needs? Please note that this is a guide only and the interviewer probed and prompted further where deemed necessary. Also, the numbering is not reflective of any sequence in which the questions were asked.