The Systematic Cultural Adaptation of a UK Public Health Cancer Awareness Raising Programme for Malaysia: the Be Cancer Alert Campaign

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The systematic cultural adaptation of a UK public health cancer awareness raising programme for Malaysia: the Be Cancer Alert Campaign

Désirée Schliemann,1, Tin Tin Su,2,6 Darishiani Paramasivam,2 Saunthari Somasundaram,3 Nor Saleha Binti Ibrahim Tamin,4 Maznah Dahlui,2,7 Siew Yim Loh,5 Michael Donnelly1

1Centre for Public Health and Abstract UKCRC Centre of Excellence for Increasingly, policy and research attention is being directed Implications Public Health, Queen’s University Belfast, Belfast, UK toward improving global health in low- and middle-income Practice: An evidence-based culturally ac- 2 ceptable cancer mass media campaign is avail- Centre for Population Health countries. This study investigated the cultural adaptation (CePH), Department of Social and of a UK-designed and developed evidence-based mass able, which may be adapted to assist efforts in Preventive Medicine, University of media campaign with the aim of improving colorectal cancer other countries and contexts to improve health Malaya, Kuala Lumpur, Malaysia and breast cancer awareness in Malaysia. Guided by the behaviors. 3National Cancer Society Malaysia, heuristic framework of cultural adaptation, a multidisciplinary Kuala Lumpur, Malaysia team adapted the UK Be Cancer Aware programme for 4 Ministry of Health, Kuala Lumpur, implementation in the Malaysian context. The approach Policy: Adaptation of an evidence-based pro- Malaysia included five steps: (a) information gathering and needs 5 gramme facilitates the time-efficient implemen- Department of Rehabilitation assessment; (b) preliminary design; (c) preliminary testing; tation and delivery of urgently needed public Medicine, Faculty of Medicine, (d) refinement; and (e) final trial. Key findings from the University of Malaya, Kuala health interventions in resource-poor settings. Lumpur, Malaysia information gathering stage related to the need to take into 6South East Asia Community account differences in ethnicity, religion, and beliefs about Observatory (SEACO), Monash cancer. Discussions with experts indicated that particular University Malaysia, Bandar words were not acceptable in Malay culture and that specific Research: Cultural appreciation and adaptation Sunway, Malaysia aspects were “taboo” (e.g., showing pictures of breasts in is a key investigative activity in the successful 7Facultas Public Health, University relation to breast cancer on TV). Stage 3 of the analysis implementation of public health programmes Airlangga, Surabaya, Indonesia revealed that the presentation of cancer survivors rather than and should follow rigorous implementation and health professionals on programme materials was preferred evaluation processes. by Malaysians and that there was a poor level of awareness Correspondence to: D. Schliemann, d.schliemann@ about colorectal cancer. The results were used systematically qub.ac.uk to adapt two culturally suitable cancer awareness mass media involves altering and testing systematically an campaigns for implementation in Malaysia. The developed evidence-based intervention (EBI) that has been Cite this as: TBM 2019;9:1087–1099 materials were in line with government priorities and took doi: 10.1093/tbm/ibz134 proven to be successful for one population to make into account the local health care system structure. The it culturally appropriate and relevant for a different establishment of a partnership with key stakeholders (e.g., the © The Author(s) 2019. Published by population [1,2]. It is important to acknowledge that Oxford University Press on behalf of Ministry of Health and the lead patient advocacy organization) the Society of Behavioral Medicine. and the application of a systematic approach to address cultural culture is not a fixed set of characteristics limited to factors and resource constraints contribute to the successful race and ethnicity but, rather, a constantly evolving This is an Open Access article distributed under the terms of the Creative implementation of public health programmes in global health and dynamic concept which encompasses the col- Commons Attribution License (http:// settings. lective views, beliefs, norms expectations, tradi- creativecommons.org/licenses/ tions, customs, and interactions that distinguish by/4.0/), which permits unrestricted reuse, distribution, and reproduction in Keywords population groups [1,3,4]. The first framework to any medium, provided the original work guide this process by Barrera and Castro [5] and Cultural adaptation, Mass media, Breast cancer, is properly cited. similar frameworks since [6,7] have been reviewed Colorectal cancer, Interdisciplinary research, extensively across different health care disciplines Malaysia and settings [8–11]. Importantly, empirical studies indicate that a culturally adapted EBI is similarly INTRODUCTION effective to its original version [4,12]. Recently, the Cultural adaptation is an important process in im- various frameworks were used to develop a con- plementation science in recognition of the often sensus approach to the stages of cultural adaptation neglected role of context and, so, the process fo- by Barrera et al. [13]. cuses explicitly on the cultural context of trans- The main benefits of cultural adaptation are the in- lating an intervention for delivery and uptake by a creased chance of interventions being successful and new target population [1]. In essence, this process the saving of resources (e.g., time, costs, and staff)

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to support intervention design. Therefore, countries science guidelines for global health practice in terms with a lack of resources for preventative and diag- of involving policy makers and other stakeholders nostic services (i.e., low- and middle-income countries [14], the panel that advised the adaptation process [LMIC]) may particularly benefit from evidence- comprised experts from the UK (i.e., QUB and the based interventions developed in high-income coun- PHA NI) and Malaysia [i.e., UM, National Cancer tries with a greater budget allocated to health care Society Malaysia (NCSM) and Ministry of Health and preventative services [14]. Mindful of these Malaysia (MOH)]. benefits, collaborators from Queen’s University Belfast (QUB) and the University of Malaya (UM) Stage 1: information gathering and needs assessment identified the Be Cancer Aware Campaign (BCA) Methods run by the Public Health Agency Northern Ireland Researchers from QUB and UM met with pro- (PHA NI) that was informed by the Be Clear on gramme coordinators from the PHA NI in June Cancer (BCOC) campaign in England as successful 2016 to gather information (including all campaign mass media campaigns to improve awareness about materials and internal PHA NI evaluation reports) different types of cancer in NI. Findings from these to learn about the development, implementation, campaigns reported increased awareness about the and evaluation of the BCA campaign (PHA NI. signs and symptoms of cancer [15] (Public Health Evaluation Report Breast Campaign; Evaluation Agency. Evaluation Report Breast Campaign; Report Primer and Lung Campaign). Panel mem- Evaluation Report Primer and Lung Campaign). bers from both countries co-conducted research Furthermore, patients who attended general prac- workshops in order to understand the local context titioner practices reported key campaign-related and to identify similarities and differences between symptoms correctly [16] and appropriate referrals of the two countries, particularly regarding the popu- patients with suspected cancer increased in the im- lation and health care system. Furthermore, we plementation areas. Also, an increase in diagnostic conducted two systematic literature reviews to gain investigation activity and a shift toward earlier stage a better understanding of the cancer landscape in diagnosis was reported [17]. Breast cancer (BC) and Malaysia and to identify gaps in cancer knowledge colorectal cancer (CRC) were the two commonest and the health education needs of Malaysians and cancers in Malaysia in 2011 (i.e., 17.7% and 13.2% of how to address them. The first systematic review all cancer cases, respectively) [18]. Stage of cancer aimed to identify the level of BC and CRC awareness detection in Asia, including Malaysia, is late com- in Malaysians as well as barriers towards screening pared to western countries, and it is estimated that [25]. The objective of the second systematic review up to 50% of premature cancer deaths could be pre- was to examine the effectiveness of mass and small vented if diagnosed and treated early [19]. One of media campaigns to improve cancer awareness and the main barriers toward early diagnosis is the lack screening rates in Asia [22]. This process helped the of awareness of signs and symptoms as well as bar- research team to identify mismatches between the riers toward cancer screening, such as negative per- different target populations. The evidence from the ceptions, fear, denial, and trust in complementary systematic review activity contributed to the cultural alternative medicine [20,21]. However, evidence adaptation process by, for example, facilitating the about the effectiveness of mass media cancer aware- identification of similarities and differences between ness campaigns to improve cancer awareness and populations and providing a research-informed beliefs in South East Asia is lacking [22]. Therefore, rationale for amendments to the intervention/ the objective of this research was to describe the sys- campaign. tematic adaptation of the BCA for BC and CRC to suit the Malaysian culture. Findings The differences and similarities between the two Cultural adaptation: methods and findings countries that were identified by the panel mem- The study has been reported in line with template for bers are outlined in Table 1. Obvious differences intervention description and replication guidelines between the two populations are the main ethnici- [23] (Supplementary Material 1). This section de- ties, languages, and religions practiced. Malaysia is scribes the conduct of the cultural adaptation of the a diverse country with Malays and other indigenous BCA campaign to suit the context of Malaysia and communities comprising the majority of the popu- is the first step in the development of the Be Cancer lation (69.1%), followed by Chinese and Indians Alert Campaign (BCAC) as outlined in the previ- (23.0% and 6.9%, respectively) [26]. Religion plays ously published study protocol [24]. Barrera and a dominant role in Malaysia—Islam is practiced Castro’s heuristic framework of cultural adaptation most commonly (61.3%), especially among Malays, was used to guide the cultural adaptation process. followed by Buddhism (19.8%), Christianity (9.2%), The stages of the process are based on a consensus and Hinduism (6.3%) [27]. Studies of South East that emerged from various adaptation frameworks Asian populations that explored the role of religion and guidelines [5,13]. In line with implementation and cultural beliefs in cancer prevention and early page 1088 of 1099 TBM ORIGINAL RESEARCH - (Continued) Northern Ireland and Malaysian population and health care system. care and health population and Malaysian Ireland Northern mediums required population Ireland, than in Northern (Petaling Jaya) in Malaysia area. study density is higher in the selected services. and are in English/Tamil/Chinese communicate only communities in other languages. to communicate not comfortable/able behaviors. stations, etc.) and use of language cost less is likely advertisement print but as well population rural effective ials. Stigmas, beliefs, and role of family likely to differ between between to differ likely of family ials. Stigmas, beliefs, and role countries. - treat the NHS (not all cancer by UK citizens is paid for treatment in Malaysia). covered are ment costs category. that age from recruited only we and above, Breast and colorectal cancer present a significant burden for the for burden a significant present cancer and colorectal Breast Explanation/justification/challenges/consideration Different national TV channels, radio stations, and print advertising print advertising national radio stations, and TV channels, Different area study in the selected is smaller population the study Although diagnostic and early prevention for available are resources Different families and some in Malaysia, is the official language Malay Although beliefs and health people’s some to influence is likely Religion channels (location, in terms of advertisement to be considered Needs TV covers example, for placement, advertisement for Consider Cost of cancer treatment is of greater concern for Malaysians as Malaysians for concern is of greater treatment of cancer Cost 40 years aged and females males was population the target Since visual mater when creating into account to be taken Needs Selangor State Selangor and 35% of ambulatory care covered by public public by covered care and 35% of ambulatory sector) Breast cancer: 17.5/28.6/31.1 cancer: Breast cancer Colorectal 16.3/11.7/14.6 (male): 10.7/9.5/11.1 (female): Be Cancer Alert Alert Be Cancer Malaysia and Lumpur of Kuala Territory Federal area: Study 32.4 million [ 43 ] 32.4 million ~200,000 area: Study country middle-income Upper (82% of inpatient care System Care Health Dual-tier Tamil English, Cantonese/Mandarin/Hokkien, Malay, Hinduism Islam, Buddhism, Christianity, groups All socioeconomic Semiurban and urban communities years and above 40 years Aged (Malay/Chinese/Indian) Malaysian years and above 50 years aged Breast cancer: 22.3/148.4/10.3 cancer: Breast cancer Colorectal 9.5/71.7/93.8 (male): 8.5/56.5/62.5 (female): Be Cancer Aware Aware Be Cancer Northern Ireland Northern 1.88 million country High-income (NHS) System Care Health National Christianity (Catholic, Protestant) groups All socioeconomic Rural, semiurban, and urban communities English Across all ages with primary target group group target with primary all ages Across Irish Northern a cases/crude rate/age- cases/crude per rate standardized 100,000) Description of the target populations (Northern Ireland and Malaysia) Ireland (Northern populations of the target 1 | Description Table rate Incidence of all cancer (percentage Setting Country Population statistics Population status [ 44 ] Socioeconomic System Care Health Religion status Socioeconomic Rural/urban risk Cancer Language Study population Study Age (most common) Ethnicity

TBM page 1089 of 1099 ORIGINAL RESEARCH more people are likely to die from cancer in Malaysia) cancer to die from likely are people more compared to the Northern Ireland. to the Northern compared Malaysia compared to Northern Ireland. Ireland. to Northern compared Malaysia screening invitations, and citizens are more likely to be familiar to be familiar likely more are and citizens invitations, screening as screening. as well with the condition Explanation/justification/challenges/consideration (i.e. is higher in Malaysia to incidence mortality compared Cancer Breast and colorectal cancer are detected at later stages are in Malaysia cancer and colorectal Breast Breast and colorectal cancer occur earlier in males and females in and females earlier in males occur cancer and colorectal Breast Screening attendance in the UK is higher already due to regular due to regular in the UK is higher already attendance Screening 3: 23%; Stage 4: 20% Stage 3: 30%–32%; Stage 4: 33%–36% years 45 years over aged women of 60 years age if at high risk for if at high risk for a mammogram to undergo screening). (opportunistic cancer breast every a mammogram to undergo recommended screening) [ 45 ]. (opportunistic 2 years above should conduct a yearly fecal occult blood occult fecal a yearly conduct should above screening) [ 46 ]. test (opportunistic Be Cancer Alert Alert Be Cancer 18.7/ 18.4 cancer: Breast 10.7/ 11.2 cancer: Colorectal Stage 1: 20%; Stage cancer: 2: 37%; Stage Breast Stage 1: 10%; Stage 2: 24–25%; cancer: Colorectal Breast cancer: most cancer cases presented in cases presented most cancer cancer: Breast after the most cases presented cancer: Colorectal (a) Women aged 40 and above are recommended recommended are 40 and above aged (a) Women are 50 and 74 years between aged (b) Women years and 50 and 75 years between Men and women 39.7%; Stage 3: 12.8%; 5.4%; Unknown: 39.7%; Stage 3: 12.8%; 5.4%; Unknown: 5.5% 20.0%; Stage 2: 28.6%; Stage 3: 29.2 10.2% %; Stage 4: 22.2%; Unknown: years 50 years over aged in women of 65 years sented after the age years 3 years every a mammogram for invited years are invited for a fecal occult occult a fecal for invited are 74 years (population- 2 years blood test every based screening). Breast cancer: Stage 1: 42.4%; Stage 2: cancer: Breast Stage 1: (combined): cancer Colorectal Be Cancer Aware Aware Be Cancer Breast cancer: 33.0/15.9 cancer: Breast cancer Colorectal 23.8/10.7 (combined): Breast cancer: most cancer cases presented cases presented most cancer cancer: Breast - cases pre most cancer cancer: Colorectal years are are 50 and 70 years between aged Women screening). (population-based Men and women aged between 60 and between aged Men and women dence %) dence world age-standardized age-standardized world per 100,000) rate ] and statistics for Malaysia were obtained from the Malaysian National Cancer Registry report 2007–2011 report Registry 2013–2017 obtained[ 47 ] Cancer report Registry the National and BC;Malaysian statistics from Cancer obtained were for Ireland are statisticsthe Malaysia Ireland Northern Northern from for CRC only and for females for both sexes for Reported a Stage (inci at detection - Cancer mortality (crude rate/ Cancer ] and GLOBOCAN 2018 [ 48 ]. [ 18 ] and GLOBOCAN Age-specific incidence rate incidence Age-specific Screening guidelines Screening cancer Breast Colorectal cancer Colorectal Table 1 | Continued Table page 1090 of 1099 TBM ORIGINAL RESEARCH

detection suggested that social stigma and fear about habits as the top-noted signs for CRC. Furthermore, cancer were barriers to earlier detection [28,29]. barriers toward BC screening were identified as A study by Daher et al. reported that women in the pain and lack of time, whereas barriers toward CRC Middle East, where Islam is the most dominant reli- screening were found to be embarrassment, fear of gion (similar to Malaysia), were highly reluctant to discomfort, and uncertainty about whether or not discuss breast or gynaecological-related issues with people should take a screening test. The second sys- their doctors and even more reluctant to undergo tematic review identified that screening campaigns a physical examination [30]. Also, studies of South in Asia tend to be conducted through small media East Asian women as well as Muslim immigrant communication and information about the evalu- women in the USA reported that the concept of ation of mass media campaigns is lacking [20]. There preventative screening is novel to women and that was only one mass media campaign in Malaysia and illness is seen as fate [28,31] and as punishment from it focused on oral cancer awareness [38]. Loh et al. god [32]. In addition, according to socio-cultural also highlighted that there are numerous cancer norms, often, Muslim women are expected to put awareness raising campaigns in Malaysia delivered the health of their families before their own health by industry and NGOs, in particular BC awareness [31]. Whilst religion and cultural norms appear to campaigns. However, scientific evaluation of these be barriers toward early detection of cancer, a meta- campaigns is lacking [39]. analysis reported an association between spirituality and/or religion and better-reported physical health Stage 2: preliminary design in cancer patients [33]. In brief, best available evi- Methods dence and local discussions indicated that religion Two expert panel discussions (EPD) were conducted should be taken into account in the development of in August 2017 with the objective of investigating cancer-related interventions; and practitioners and the appropriateness and cultural acceptability of researchers should focus on elucidating the import- the BCA campaign materials: that is, key messages, ance of cancer prevention. print materials, and radio and TV scripts for use in In Malaysia, Bahasa Melayu is the official language Malaysia. We invited experts from the following and most Malaysians speak English. Each ethnic areas: family physicians (n = 3), public health group also practices their own language (Tamil, (n = 4), language and linguistic (n = 1), cancer advo- Mandarin, Cantonese, and Hokkien). The main eco- cates (n = 4), and media and communication (n = 5). nomic differences between the UK and Malaysia are The panel comprised fluent native speakers of the that Malaysia is a middle-income country, whereas four main languages (Malay, English, Cantonese, the UK is a high-income country [34]. The health and Tamil). Each EPD took one working day and care system in Malaysia is dual tiered with well- was guided by one of the lead investigators (TTS). established and used public and private health care The format of the EPD was structured, that is, direct services [35]. The public health services are highly questions were asked regarding the clarity and ac- subsidized, that is, patients pay RM1 (equivalent of ceptability of each type of campaign material and 20 cents) for all outpatient treatments and RM5 for about suggestions for further improvement. The specialist visits, but there are out of pocket expenses discussions were tape-recorded and then destroyed such as transport and food for inpatient stays. In the after transcription of the EPD. UK, the National Health Care System covers cancer- related services and treatments free at the point of delivery. Financial concerns regarding cancer treat- Findings ment are more prevalent in Malaysia—qualitative The expert panel deemed that the cultural relevance interviews indicated that patients were fearful about of the materials and key messages therein needed to not being able to afford cancer screening or treat- be modified (Table 2). Words that may not be easily ment [21,29,36]. Economic hardship may affect a understood or misinterpreted needed to be changed patient’s family in Malaysia, whereas welfare bene- and cancer statistics and health system-related ter- fits are available in the UK (unlike Malaysia) as a minology needed to be adapted to be culturally means of providing some support to cancer patients appropriate for Malaysians. For example, “general and their families [37]. In Malaysia, BC and CRC practitioners” in Malaysia only refers to doctors are detected at a later stage and cancer mortality in working in private clinics and, therefore, needed to relation to cancer incidence is greater compared to be changed to “doctor.” NI (Table 1), thereby highlighting the urgent need Overall, the experts judged that more direct mes- for advances in early cancer detection in Malaysia. sages and words of “action” were required (e.g., Findings from the first systematic review regarding change “listen to your body” to “check your breasts”). cancer awareness highlighted that Malaysians recog- A series of 30 s radio spots were thought to be suf- nize “lump in breast or under armpit” and “breast ficient to communicate the key messages. In par- pain” as the most common signs for BC; and rectal ticular, the BC TV scenarios needed to be changed bleeding, blood in stool, and changes in bowel as it was not culturally acceptable to demonstrate

TBM page 1091 of 1099 ORIGINAL RESEARCH Change symptom terminology so that it is easily understood by Malaysians. Malaysians. understood terminology by so that it is easily symptom Change “GP”Change to “doctor.” rates. survival Check statistics in line with Malaysian are message. direct a more for breasts” your body” to “check “listen to your Change when translated. as it can be misleading “found” or to “detected” “caught” Change of cure. message a positive Convey a call to action. Have clarity. and to improve tone to speak be in line with local people local Use ad. Shorten groups. population reach different to languages in different Record when except TV on “breast” taboos, or “nipple” that is, cannot say cultural around Work TV. on breasts to show Taboo to relate. to be able people for environment in ordinary people ordinary Use culture. as it is important in Malaysian component Bring in family be encouraging. should Tone housewives. by during daytime watched Choose TV channels commonly races. to all three to be appealing Needs interesting/appealing. Visuals need to be more the message. Shorten relevant. it locally Make tive messages.” messages.” tive cancer.” talking “breast about Breast cancer cancer Breast messages: Key • • provider.” healthcare to doctor or the GP words on improve “Must • data their data?” Is it local or the data from. where are I wonder survived, of 10 women “9 out • • • posi - only to be positive, have messages I think key So, as a death sentence. is known “Cancer • Radio advertisement • attention.” more to attract presenter of advertisement voice or the tone to change “Try • • TV advertisement • • TV3.” TV in the mainstream channel like the breast “I do not think can advertise • famous.” look rich, who doesn’t look who doesn’t person, an ordinary to have “Try • setting.” house with average around, their family “Add • • during ladies talk choose show.” to advertise including housewives, are groups the target “As Print advertisement • standing together.” races different three by survivors three be good to having would “It • • • “GP” refers to private health care only in Malaysia and needs to be changed to “doctor” to “doctor” and needs to be changed in Malaysia only care health to private “GP” refers to “stool.” and needs to be changed used in Malaysia is not commonly “Poo” than after 6 weeks. visit a doctor sooner should Malaysians in Malaysia. statisticsSurvival different are early.” and treated if found can be cured “cancer saying Strengthen message by action. body” is too soft and does not call for “listen to your Message to 30 s) (change too long 40 s are culture. to local concept Adapt need to be shorter. and sentences direct be more should Messages not understand “number two.” may Malaysian’s the toilet. sitting on someone to show in Malaysia acceptability cultural about Concerns in the TV ethnicity of person Change ad. acceptable. culturally more concept Make preferred. text less wordy; Too the message). suitable delivering (i.e., ethnicity of person change poster culturally Make change ‘poo’ to ‘stool’.” ‘poo’ change general practitioner general

Findings and quotes from the expert panel discussion the expert 2 | Findings and quotes from Table cancer Colorectal messages: Key • the GP to a Doctor.” “I think better to change • to kids, Prefer used by or referred widely because this word to use ‘poo’ not prefer “I’m • • • attention.” more and attract catchy will be more cured “I think using the word • “I think listen to body is too weak.” to?” referring parts,we which part are many bodies have “Listen to body, Radio advertisement • a 30 sec advertisement.” “I think better to have • • understand.” to the point and easy “Better straight get • call.” nature’s call or instead use a long use the ‘number two’ won’t Malaysian “Basically, TV advertisement • sitting in the toilet.” someone to show acceptable “I do not think so it will be culturally • to be in the TV ethnicity person local advertisement.” to have “Prefer • Print advertisement • flavour.” a local to local better change sentences, too long read won’t “Malaysian • context.” to Malaysian according better to change and it’s UK culture on “This poster is more GP page 1092 of 1099 TBM ORIGINAL RESEARCH

BC symptoms on mannequins or real people, par- whereas other participants thought that TV mes- ticularly with respect to the Muslim community. sages should be encouraging in order to empower A suggestion from the panel to use Malaysian celeb- people to visit a doctor if they noticed any abnormal rities was overruled in favor of presenting ordinary changes. Therefore, a consensus emerged that indi- people in everyday environments and highlighting cated that cancer survivors instead of doctors should the importance of family. Regarding posters, find- deliver the messages in all communication channels. ings from the EPD suggested that “visuals” needed Furthermore, participants agreed that the inclu- to be inclusive to appeal to all three main ethnicities sion of celebrities was likely to attract attention to in Malaysia. the BC campaign. However, celebrities alone might send out the wrong message, that is, it may indir- Stage 3: preliminary testing ectly imply that “ordinary” women cannot afford Methods treatment and only rich people can survive cancer. Six structured group discussions (GD) were con- According to participants, there was too much ducted from August to October 2017 with parti- text on posters and radio and TV advertisements cipants reflecting the target population, that is, needed to be shortened. There was a low level of fa- Malaysians aged 40 years and above. Two GD miliarity with the colon, which confirmed the need were conducted with each ethnic group (Malays, to raise awareness about CRC signs and symptoms. Chinese, and Indians), one GD with participants Therefore, it was suggested to include an image of from low-income backgrounds and one GD with the colon on print advertisements to improve under- participants from middle-income backgrounds. We standing. Participants also highlighted that they did excluded participants who were health care profes- not tend to check their stool. sionals, given that the aim was to target the media The most popular media channels amongst Malays materials toward the general (lay) population. Each were TV 3, Astro, Sinar FM, and Hitz FM. Chinese GD included 10 participants (5 males and 5 females) watched mainly 8TV and listened to Lite FM and and took approximately 1 hr. The aim was to (a) Mix FM. Indians reported watching TV3 as well identify participants’ views about the key messages as Vijay TV and listening to Thr Raaga or Minnal and materials from the BCA campaign and to (b) FM. Most participants did not read newspapers or identify the most commonly used media channels magazines. The most commonly mentioned news- by the target population. A researcher who speaks papers were Berita Harian, Harian Metro, Utusan Malay, Tamil, and English fluently (DP) conducted Malaysia, The Sun, or Star. Most participants used and recorded the GDs in Tamil or English with social media, particularly Facebook and YouTube, Indian participants and in English or Malay with and it was suggested that these channels should be Chinese and Malay participants. Materials from the used for campaign purposes. BCA campaign were presented and discussed at each GD. The content of each GD was transcribed Stage 4: refinement by two professional transcribers who were proficient Methods in the various languages and then translated into The research team collaborated fully in all stages of English by a professional translator. Analysis of the the adaption process and the research project gen- interviews was conducted by two researchers (DS, erally. Working collectively, the team analyzed the DP) independently and findings were discussed and data that were gathered from the first three stages summarized. of cultural adaptation and, then, devised suitable messages for the Malaysian awareness campaigns. Findings Print advertisements, Radio, and TV scripts were Findings from the GD are summarized in Table 3. developed together—local designers were guided Similar to the EPD, participants expressed the view by the identified key messages and findings from that the three ethnicities should be represented in the needs assessment between November 2017 and the materials. Furthermore, participants reported January 2018. Language experts forward- and back- that it would be easier to understand the messages translated all materials to ensure linguistic accuracy. if they were delivered in their respective local lan- Media communication channels were chosen in dis- guage. Participants from high- and low-income cussion with media experts and based on findings backgrounds did not find the words “nagging” and from the BCA campaign and the feedback from the “dimpling” easy to understand and, so, these terms GD. were amended. The general consensus was that the presentation of facts and numbers such as “9 out Findings of 10 women” should be retained if they had scien- The core concepts of the BCA messages were kept tific support. Views about the general tone of the and only the wording was changed to be more cultur- TV advertisements were mixed. Some participants ally relevant and acceptable to Malaysians (Table 4). reported that presenting TV material in a way that The media campaign strategy was designed in line frightened people would be an effective method, with popular media channels identified through the

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Chinese,

Chinese, Male, Low Low Chinese, Male,

Chinese, Male High Income Chinese, Male

Chinese, Female, High Income Chinese, Female, Indian, Female, High Income Indian, Female,

Quote

Malay, Male, Low Income Low Male, Malay,

Income Low Chinese, Female, Malay, Male, High Income Male, Malay,

Malay, Female, Low Income Low Female, Malay,

Malay, Male, High Income Male, Malay,

Chinese & Indian, High Income

Malay, Female, High Income Female, Malay,

Indian, Male, High Income Indian, Male, tices blood on his attire.” his attire.” blood on tices think that one must say first, must say I think that one in the beginning.”tention. it’s will know the artist. by People acting sake just for Not to the cancer. related or the cancer, without patient.” real better to take It’s fake. […].” against cancer message. One Malaysia Male, Low Income Low Male, quite difficult.” view public for symptoms], Income If there is an image that is used. […] Do you have a poster to help people understand colorectal? understand colorectal? a poster to help people have that is used. […] Do you is an image If there “I think your poster should be giving hope and encouragement to go to [see a doctor].” to go and encouragement hope be giving poster should “I think your Cartoons are inappropriate, not serious. not serious. inappropriate, are Cartoons “You said that 9 out of 10 women survive breast cancer if found and treated early. That is to catch the at - early. and treated if found cancer breast survive of 10 women said that 9 out “You people random not any but talk. be ok as well Doctor may survivors cancer will be better to have “It it short [...] Make it patiently. and reading be stopping won’t people wordings, too many put “When you lah.” with 1 1 Malaysia, become together combine TV I see, for ads, mix Chinese, Indian, Malay, one “Another tell people.” what you important, is very “Check early that’s […] and he no a guy crying at the graveyard […] Maybe action. take won’t we if not scared Malaysians, “We “What do you mean by nagging?” nagging?” mean by “What do you look at it.” really we do not and flush, business just do our “We cancer highlighting breast a picture still not OK [to show still OK. But externally, it’s an internal organ “If it’s “Usus (colon) means? Usus (colon) is what?” is what?” (colon) Usus means? (colon) “Usus Suggestions Messages including numbers, e.g. “9 out of 10 women can survive cancer” cancer” can survive e.g. including numbers, Messages of 10 women “9 out message/ doctor to communicate over is preferred survivor Cancer attention also attract would Celebrities cartoon/animation over is preferred person Real poster messages on Shorten local languages, ethnicities in different by be delivered should Messages screening to undergo of the message Highlight urgency or scary and encouraging a hopeful on whether to have opinions Different Difficult word: “nagging” word: Difficult at their stool do not look usually People TV mannequin) on street or or (real breasts to show is not acceptable It Difficulty in understanding what colorectal cancer is cancer colorectal in understanding what Difficulty to aid understanding of colon Include diagram/picture are catchy catchy are story share Chinese, and Tamil) (Malay, that is, multicultural to the messages tone advertisement) • • • • • • • • • • • • • Findings from group discussions group 3 | Findings from Table suggestions General cancer Breast Colorectal cancer Colorectal page 1094 of 1099 TBM ORIGINAL RESEARCH

Table 4 | Adapted key messages for the Be Cancer Alert Campaign

Be Cancer Aware Be Cancer Alert Explanation/justification Colorectal cancer If you’ve noticed a change If there is blood in your stool and you are Words such as “loo” and “poo” are not commonly when you go to the loo, like experiencing constipation or diarrhea for used in Malaysia and need to be changed. blood in your poo or looser several weeks, see a doctor urgently. Symptoms need to be made clearer. poos for six weeks or more, see your GP. It could be nothing. But you The changes in your bowel habits could be This message needs to be clearer. “GP” needs to won’t know until you let nothing. But you won’t know until you let be changed to “doctor.” your GP check. your doctor check. 9 out of 10 people survive Colorectal cancer can be cured if it is found and Survival statistics are not so clear for Malaysia. bowel cancer when it’s treated early. However, statistics are powerful and may help to found early. Colorectal cancer is the second most common convey the message. cancer in Malaysia. Listen to your body and talk Watch out for the cancer signs, see the doctor Be more specific, the message is too soft. to your GP. and get checked. Change GP to doctor. Breast cancer Lumps aren’t the only sign of Lumps aren’t the only sign of breast cancer. If We cannot use the word “nipple” on TV. Therefore, breast cancer. If you notice you notice any unusual changes to your skin the TV advertisement, we use the statement any changes to your skin or nipple see your doctor straight away. “Lumps aren’t the only sign of breast cancer” at such as dimpling or nipple the end of the advertisement as, however, for the changes (turned in, a dis- brochures and posters, the message remained charge, crusted), see your similar. Words that were difficult to understand doctor straight away. by the public (dimpling, crusted were removed) 9 out of 10 women survive 9 out of 10 women survive breast cancer Statistics are powerful and “catchy” and may help breast cancer when it is if it is found and treated early. to convey the message. Malaysian statistics are caught and treated early. similar to statistics in the UK. “Caught” is understood differently in Malaysia and needed to be changed to “found.” Listen to your body and talk Check your body and see the doctor. Be more specific, the message is too soft. Change to your GP. GP to “doctor.”

EPD and GD and in discussion with media experts. TV campaign designers advised that it would not be Furthermore, learning points from the BCA were acceptable for breasts (real or in the form of man- taken on board, that is, TV and clinic posters were nequins) to be shown on TV and that the words strong communication mediums to reach the target “nipple” or “breast” (except for “breast cancer”) population. were taboo on TV. We chose two Malay (TV3 and The print materials are highlighted in TV9) and one Chinese (8TV) TV station to air the Supplementary Material 2. For the CRC cam- BCAC advertisement based on the GD feedback and paign, the team decided to feature the colon as to reach the two largest ethnic groups in Malaysia. many people were not aware of what CRC was. Furthermore, Indians also understand and com- Furthermore, the headline “Don’t be shy to check monly watch Malay channels. The same videos with your stool” was chosen to make people aware of voiceovers for the various languages were presented some of the actions that can be taken to check on each station. for CRC symptoms. The BC visuals feature three The radio advertisement, too, was presented from female BC survivors, representing each ethni- the view of two cancer survivors (one male and one city, and a Malaysian supermodel (celebrity) to female for CRC to raise awareness that it affects attract further attention to the campaign. Cancer both genders; two females for BC). The radio scripts survivors were aged above 40 years to reflect the focused on the key symptoms as well as the import- target population. This is in line with the health ance of early detection since increasing awareness belief model that guided the design of the cam- about signs and symptoms of CRC and BC was the paign, that is, the target population needs to be main objective of the campaigns. Feedback from able to identify their susceptibility to the disease the EPD suggested shortening the advertisement. in order to increase the likelihood of appropriate Hence, each radio advertisement lasted only 30 s action. compared to 40 s in the BCA campaign. The TV The CRC and BC TV videos featured a local sur- advertisement targeted mainly Malays and Chinese. vivor (male for CRC and female for BC). The scripts We created English and Tamil radio advertisements, focused on presenting the key messages (cancer which were aired on Lite FM and Thr Raaga to reach awareness and importance of early detection). The all Malaysians listening to English radio stations and

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reach Indians who may not watch the chosen TV the clinic would allow the campaign posters and channels. brochures to be displayed, whereas we had to ap- In addition, we developed a social media cam- proach only the district health office in order to re- paign, which was distributed through the National ceive approval to display materials in government Cancer Society Malaysia (NCSM) Facebook page. clinics. In addition, local supermarkets allowed us Facebook was chosen as it is the social media plat- to display campaign banners and role-ups (Table 5). form most commonly used by the target population Each campaign lasted 5 weeks and surveys were (as identified in the GD). Similar to the BC TV ad- conducted before and after each campaign with the vertisement, the designers of the social media mater- target population (see study protocol [24]). ials advised that Facebook will block materials that display nudity. Therefore, presentation of the mater- DISCUSSION ials about the signs and symptoms of breast cancer This is the first study to follow a systematic approach were disguised and subtle. Finally, we developed to develop a culturally acceptable mass media a website that highlighted the campaigns and con- cancer awareness raising campaign for Malaysia. tained all the campaign information and materials. Local experts from the UK and Malaysia were In addition, NCSM promoted a toll-free helpline on closely involved in the design of the campaigns to campaign materials, which offered professional ad- ensure that there was a clear understanding of the vice regarding cancer-related topics. original campaign and its suitable adaptation for GD identified that few people read newspapers Malaysians. The evaluation and reporting of the or magazines. Therefore, we decided not to invest mass media campaign is nearing completion [24]. resources in newspaper articles given the limited As Murray et al. highlighted, cultural adaptation budget for the campaign, which was funded mainly is laborious and every country holds different chal- via the research grant. However, we organized a lenges for researchers [40]. One of the main chal- media launch which attracted journalists who wrote lenges we faced was that Malaysia is a multiethnic about the campaigns. country. Feedback from the GD and EPD suggested that people were more likely to associate with, or Stage 5: final trial internalize the messages of, advertisements that Methods featured people from their own ethnic commu- In February 2018, the final versions of the various nity. Therefore, the contents of the campaigns were materials were vetted and approved for appropri- tailored and included cancer survivors from each ateness and cultural suitability by the following community. The viewing patterns of TV channels stakeholders and experts (who were different to the and radio stations tend to be related to ethnicity and/ advisory panel at Stage 2): media communication or language preferences. So, advertisements were expert (n = 1), clinicians (n = 4), language and lin- created in several languages and streamed through guistic expert (n = 1); cancer survivors (n = 6); and various media channels (which posed a financial the NCSM health education team (n = 7) with ex- challenge in terms of funding a campaign via a re- pertise in public health, nutrition, biomedical sci- search grant). Outdoor advertisements could be dis- ences, and science communication. The group of played in Malay only and locals with poor fluency stakeholders contained several fluent speakers of in Malay may not have understood fully the cancer each language as well as multilinguists. Stakeholders messages. Furthermore, presentations and discus- reviewed the materials in the language in which they sions in public about breast health-related issues are were fluent. The designers finalized all materials unacceptable in a Muslim country such as Malaysia. after the fine-tuning exercise by stakeholders. The Therefore, the campaign was limited in how it com- impact and acceptability of the campaign was evalu- municated the signs and symptoms of BC. It is un- ated as described in the study protocol through a clear at this point in time how this restriction might population-based mass media campaign, which affect the impact of raising awareness about BC. the team evaluated through prehousehold and In line with the majority of adapted evidence-based posthousehold surveys and data from local clinics public health interventions, this study describes and hospitals [24]. the content, context, and cultural modifications of the original BCA campaign [41]. Furthermore, the Findings evaluation of the BCAC will include knowledge and The experts approved the materials as shown in the attitude assessment, which is missing from many appendix. The team evaluated the impact of each studies [41]. Often, research on the cultural adap- campaign through comprehensive before-and-after tations of interventions addresses minority groups population-based surveys. Printed outdoor advert- such as African Americans or Chinese Americans isements required the approval of the local govern- [8,40]. However, the adaptation of interventions that ment council and written outdoor content had to be address barriers that are faced by multiethnic popu- presented in Malay. Each private clinic had to be lations may promote cancer screening generally and approached separately to enquire whether or not not only for minority populations—a positive finding page 1096 of 1099 TBM ORIGINAL RESEARCH

Table 5 | Comparison of campaign activities (Be Cancer Aware and Be Cancer Alert Campaign)

Be Cancer Aware (Northern Ireland)a Be Cancer Alert Campaign (Malaysia) Print materials: Print materials: • 4 × Newspaper advertisements (paid), throughout October • Billboards • 1 Magazine inserts × 8 women magazines, throughout October • Street buntings • Language: English • Posters and brochures in public and private clinics • Roll-up banners in supermarkets • 5 × Newspaper articles (free-of-charge through media launch event) • Language: English and Malay TV advertisements: TV advertisements: • UTV, Channel 4, and Video on demand • TV3, TV9, and 8TV • Available on YouTube • Available on YouTube • Duration: 40 s; 7 weeks (2–6 ads/day) • Duration: 30 s; 5 weeks (4–6 ads/day) • Language: English • Language: Malay and Mandarin (TV) and English (YouTube) Radio advertisements: Radio advertisements: • U105FM, Downtown Radio, and Classic FM • Lite FM and THR Raaga • Duration: 40 s; (267 ads over 30 days) • Duration: 30 s; 2 weeks (5–7 ads/day) • Language: English • Language: English and Tamil Website: Website: https://www.becancerawareni.info/ http://www.becanceralert.com/ • Paid Google search engine enhancement • Language: English and Malay • Language: English Social media: Social media: • 7 × Facebook advertisements • Facebook campaign, 5 weeks (4 posts/week) • Duration: spread over 4 weeks • Language: majority in Malay and English; few in Chinese and • Language: English Tamil • Influencers: 2 posts from Malaysian influences on Facebook and Instagram Colorectal cancer: Fara Fauzana (social media influencer and moderator) and Jack Lim (radio presenter and actor) Breast cancer: Amber Chia (supermodel) Total campaign duration: Total campaign duration: Breast cancer: 8.5 weeks (October 1–November 30, 2015) Colorectal cancer: 5 weeks (April 2–May 6, 2018) Breast cancer: 5 weeks (September 24–October 28, 2018) aMaterials listed refer to the Be Cancer Aware breast cancer campaign in Northern Ireland as the Be Cancer Aware colorectal cancer campaign has not yet taken place.

that is important for countries with diverse popula- limited budget (drawn from a research grant) and tions [42]. We will evaluate at a later stage the ex- in the face of other related constraints. For example, tent to which the BCAC was successful in terms of distribution of print advertisements to private clinics reaching and engaging a multiethnic population. proved time consuming. This fact merits reflection The BCACs were the first mass media breast and about what might be achieved with a properly re- CRC awareness campaigns that were developed spe- sourced budget from a government health depart- cifically for Malaysia and that followed a systematic ment or a benevolent NGO. Our budget would not approach. A key strength of this research was the have afforded us the opportunity to redesign or re- multidisciplinary team and the close involvement of produce campaign materials if the target population cancer survivors and health care professionals (i.e., disliked the videos, pictures, and messages or found doctors and surgeons). Previous campaigns tended to them unacceptable. The systematic, theoretically be run in isolation by one organization (e.g., by gov- driven approach and thorough groundwork that was ernment, nongovernmental institutions, or industry) used in the adaptation and production of the ma- and to lack the resources for a comprehensive cam- terials ensured that they were context sensitive and paign or the rigorous evaluation of campaign effect- culturally appropriate. iveness. According to Theobald et al., writing in the The team worked closely with a number of Lancet about the imperatives and opportunities in stakeholders and it is clear from the results of our global health, building trusting partnerships with key coworking that the involvement of local stake- stakeholders and the coproduction of knowledge are holders is key to overcoming challenges in a timely key to successful implementation science practice [14]. manner. Future public health efforts should include Our research provides clear evidence that it is pos- relevant key stakeholders and professionals from sible to systematically develop and present a public local communities that reflect the varied profile health campaign that is designed to raise cancer of the target population. Consideration of rele- awareness in an LMIC using largely a restricted or vant sociodemographic factors in the context of

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