Western and Traditional Medicine: Cultural Beliefs and Practices o f SA Muslims with regard to Down Syndrome 27 WESTERN AND TRADITIONAL MEDICINE: CULTURAL BELIEFS AND PRACTICES OF SOUTH AFRICAN MUSLIMS WITH REGARD TO DOWN SYNDROME Tasneem Dangor* and Eleanor Ross# *Speech Pathology and A udiology, School o f Hum an and C om m unity Developm ent, University o f the W itwatersrand ^Social W ork, School o f H um an and C om m unity D evelopm ent, U niversity o f the W itw atersrand a b s t r a c t The aim o f the study was to investigate the beliefs a n d practices o f caregivers a n d traditional healers within the South African M uslim community regarding D ow n syndrome. An exploratory-descriptive research design was utilized which incorporated individual interviews with 10 caregivers o f persons with D ow n syndrom e as w ell as 10 traditional healers fro m the South African M uslim community. Common beliefs em anating fr o m both groups relating to the cause o f D ow n syndrom e included the notion tha t this condition was genetic in origin and that such children were p erceived to be gifts fr o m God. Others attributed D ow n syndrom e to a p unishm ent fr o m G od or the result o f curses fr o m people. Treatment included the use o f inscriptions fr o m the Quraan, w ater that had been p ra y e d over and herbal medicines. Some caregivers seem ed reluctant to approach western health care professionals due to negative p a s t experiences. The main reasons f o r consulting traditional healers were cultural beliefs a n d pressure fr o m fa m ily members, their holistic approach and the perso n a l nature o f their interventions. Collaboration between allopathic medicine and traditional healing was advocated by alm ost all o f the traditional healers. These fin d in g s underline the need f o r culturally sensitive rehabilitation practices in speech-language pathology and audiology; and collaboration between w estern health care practitioners a n d traditional healers. Key W ords: M uslim traditional healers; Down syndrome; cultural beliefs INTRO DUCTIO N Differences in socio-cultural experiences, ethnic histories and family backgrounds are likely to influence people’s w orldviews regarding the aetiology o f illnesses and disorders, and the par­ ticular healing m ethods followed by individuals (Battle, 2002). In terms o f worldviews, there has been a tendency to distinguish between two m ain types o f health conventions, the so-called m odem approach that is located within a western m edical para­ digm and the traditional approach, w hich is based on indigenous b elief systems (Hall, 1994). W estern biom edical or allopathic medicine,, is rooted in Anglo-Saxon and Judeo-Christian value bases (Tjale & de Villiers, 2004) and initially tended to view disease as a form o f biological m alfunctioning, w ith ill health m anifesting in chemical, anatom ical or physiological changes (Ross & Deverell, 2004; Tjale &jde Villiers, 2004). H ealing was perceived as the scientific process o f treating disease through appropriate m edical, surgical j and chem ical interventions (Chalmers, 1996). However, m ore recently, there have been at­ tempts by the W orld Health Organization (W HO, 2002) to inte­ grate the biom edical m odel with a social model to form a b i­ opsychosocial model w hich considers bodily functions and structures, activities perform ed by an individual, level o f partici­ pation in societal activities, and the influence o f personal, and environm ental factors on functioning, disability and health. A m ajor cause o f the pre-em inence o f W estern m edical practice, specifically in South A frica, was its connection with the coloni­ alist and later apartheid regimes w hich stressed the superiority o f W estern m edical practice (Tjale & de Villiers, 2004:2). U niversity o f the W itw atersrand e-m ail: rosse@ um thom bo.w its.ac.za Private B ag 3 Tel. +27 11 717-4481 PO W its Fax. +27 11 717-4573 2050 Johannesburg . South A frica W ithin traditional m edicine, the terms diseases, disorders, disabilities and ailments are often used interchangeably and are generally seen as arising from natural, social, spiritual or psycho­ logical disturbances that create disequilibrium expressed in the form o f physical or mental ill health. Traditional healing endeav­ ours to restore harm ony and equilibrium through natural, spiritual and psychological healing w hile the concepts o f curing and heal­ ing are also often used interchangeably (Du Plessis, 2003). How­ ever, the problem involved in distinguishing between western biom edical and traditional healing systems is that in the process they tend to becom e polarized and the one system is often viewed as superior to the other. For example, the late Edw ard Said in his canonical text on Orientalism (1995) discussed the skewed view o f the Other, including the Islamic world, w hich was based on W estern cultural hegemony. Despite the existence o f cultural hegem ony, in m any countries, people from all socio-econom ic and educational strata often utilize both biom edical approaches as well as traditional practices, creating a m edical syncretism that integrates both models and has im plications for treatm ent or m an­ agem ent o f disorders and com pliance with therapy (M uela, R ib­ era, M ushi & Tanner, 2002). South African speech-language therapists and audiologists are expected to render culturally sensitive and appropriate ser­ vices to families from diverse cultural, linguistic, religious and ethnic groups. Hence, they need to be aware o f the beliefs and practices o f these different groups in relation to health, illness and disability, and ways o f restoring well-being. One com m unity that forms an essential part o f the fabric o f South African society is the M uslim community. However, it is acknowledged that not all M uslim s form part o f a hom ogeneous community; nor do they share the same cultural ideologies in relation to health and heal­ ing, illness and disability. Down syndrome is a disabling condition that affects over two m illion people worldwide (The N ational Down Syndrome Society, 2004). In South Africa, m any children with D ow n syn­ The South African Journal o f Communication Disorders, Vol. 53, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) mailto:rosse@umthombo.wits.ac.za 28 Tasneem Dangor and Eleanor Ross drome are currently undiagnosed. Nevertheless, the condition w ould appear to be prevalent with a hospital /clinic diagnosis esti­ m ated to occur in less than 20% o f cases (Christianson, 1995). However, despite the relatively high prevalence o f the condition, there would seem to be a paucity o f research focusing on the views o f mem bers o f the South African M uslim com m unity re ­ garding the causes and m anagem ent o f D own syndrom e or the healers that are com m only consulted in this regard. Speech-language therapists and audiologist have an im por­ tant role to play, not only w ith respect to the cognitive, speech, language and hearing sequelae o f Down syndrome, but in support­ ing people with D own syndrome and their families and caregiv­ ers, more specifically in multicultural settings. Attitudes o f caregivers and healers often play a major role in deciding whether the child will go to school and be placed in a stimulating environm ent that promotes learning, - either a special school or inclusive educational setting - or rem ain at home. M an­ agem ent approaches are often influenced by cultural and religious beliefs and practices and also depend on socio-econom ic factors as well as access to facilities and resources, including mem bers o f the m ultidisciplinary team. A lthough caregivers and parents form an integral com ponent o f an effective intervention program m e in a natural setting, formal and more structured therapy should not be overlooked (Bernstein & Tiegerman, 1999). Furtherm ore, therapy does n ot take place w ithin a vacuum, but occurs w ithin a social and cultural context. Culturally sensitive practice is likely to make clients feel more com fortable in therapy; can potentially increase client compliance; and increase the likelihood o f successful treat­ m ent and interventions being achieved (D avis-M cFarland, 2002). Culture and religion are inextricably intertw ined within the South African M uslim b e lie f system. A M uslim is one who sub­ mits to one G od and is a follower o f the teachings o f Prophet M u­ ham m ad, who is regarded as the final messenger. W ithin Islam, illness, disease and disability are all seen to be A llah ’s (G od’s) will, sent down by God. Adherents o f Islam are expected to act w ith compassion towards the poor, the sick and the disabled. M uslims also believe that the Prophet M uham m ad was sent as a m ercy to mankind, given the wisdom by A llah with regard to healing. This approach to healing is know n as prophetic medicine (Tibb-an-Nabawi). It is not restricted to spiritual healing, but in­ stead balances the healing o f the soul and the physical being, so as to prepare man for the hereafter (Jauziyah, 1999). The birth o f a child with a disability is not easily accepted w ithout feeling sorrow and having negative emotions. W hat helps people to deal with these feelings is the worldview to which one subscribes. Caring for a child with a disability or disorder is seen as a form o f ibadah (worship). Another w ay o f approaching this experience is as a challenge or test from God. D evout Muslims believe that G od does not give them a test w ithout providing m ethods, which they can use to deal with this tragedy. Adherents to Islam are advised to share their tragedy w ith others, perform additional prayers, give extra charity and request others to pray for them (Sakr, 1996). Islam considers the world as a place in w hich difficulties and calamities are natural components. By know ing that difficulties are placed upon everybody and not ju st the individual, the feelings o f distress can be shared particularly with other fam ily mem bers (Bayanzandeth, Bolhari, Ghasemabadi & Ramasani, 1997). In m any eastern cultures, including the South African M us­ lim culture, families exist w ithin extended fam ily systems that form part o f collectivistic com m unities (Tom oeda & Bayles, 2002). A great deal o f respect, authority and decision-m aking is accorded to the elderly mem bers, as they are perceived to have acquired great wisdom. The illness o f one individual is usually seen as a predicam ent affecting not only the nuclear family but also m embers o f the extended family, and one is expected to re­ spect the advice given by older fam ily mem bers. D uring such times, one is also expected to make use o f the agents that God has provided. This includes a responsibility to seek adequate medical (or other) advice. In this regard, western health care professionals and/or eastern traditional healers m ay be consulted (Bayanzadeth et al., 1997). There are three m ain groups o f M uslim traditional healers: Firstly, there are M oulanas who are spiritual healers that occupy an essential and honoured position within the M uslim culture and are consulted by m any South African M uslim s for psychological, m edical and social problems. They are defined as pious Islamic scholars who are well learned in all aspects o f the religion o f Is­ lam. Secondly, there are Hakeem s, also know n as M uslim physi­ cians, who are also consulted by the South A frican M uslim com­ munity. Their services include the providing o f ointm ents and m ixtures, which are m ade from herbs that are know n to have bene­ ficial healing properties and are designed to restore imbalances in the body humors i.e. blood, phlegm, bile and spleen. In addition, g ift healers, who are blessed with supernatural powers, also assist the South African M uslim families with healing/treatm ent o f vari­ ous illnesses and disabilities (Desai, 1998). A lthough accurate figures are not available regarding the num ber o f South A frican M uslim s who consult w ith M uslim tradi­ tional healers, it is estim ated that approxim ately 8 out o f 10 Black South Africans consult w ith various types o f traditional healers in conjunction with or in preference to western trained medical prac­ titioners (Keeton, 2004). The W orld H ealth O rganisation (WHO) also recognizes traditional healing as an integral part o f the pri­ m ary health care system in developing countries (W orld Health Organization, 1978:429). Consequently, several studies have fo­ cused on traditional healers’ approaches to various disorders. For example, in terms o f A frican traditional healers, Du Plessis (2003) investigated their approaches to HIV/AIDS; de Andrade & Ross (2005) explored beliefs and practices in relation to hearing impair­ ment; while Platzky & G irson (1993) focused on stuttering. A ccording to D agher & Ross (2004) beliefs regarding the causation o f birth anom alies are not always grounded in empirical science, but are often understood from a m agico-religious or cul­ tural perspective (Tjale & de Villiers, 2004). For example, Badat (2003) interviewed a group o f M oulanas from the G auteng Mus­ lim Com m unity regarding their approaches to cleft lip and palate. A com m on b e lie f was that cleft palate is G od sent and should not be questioned. Participants in her study acknow ledged the exis­ tence o f various superstitious beliefs and practices in the Muslim community. For instance, if a pregnant w om an handled a sharp object during the time o f an eclipse, her baby was likely to be born w ith a birth anomaly. In B adat’s (2003) study, emphasis was also placed on prayer and tarweez, which is an inscription from the M uslim Holy Scriptures w ritten on a piece o f cloth and usually w orn in the form o f an amulet. However, despite the relatively high prevalence o f Down syndrome w orldwide, and the fact that m any speech-language therapists and audiologists render services to these individuals and their families, few, if any studies have focussed on the approaches o f South African^M uslim traditional healers and caregivers in relation to this condition. For these rea­ sons the study aim ed to investigate the beliefs and practices of caregivers and traditional healers within the South African Muslin1 com m unity in G auteng regarding Down syndrome. It was antifl' pated that this research w ould have im portant implications f°r D ie Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 53, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) Western and Traditional Medicine: Cultural Beliefs and Practices o f SA Muslims with regard to Down Syndrome 29 cross-cultural awareness and culturally sensitive rehabilitation practices for various disciplines functioning in m ulticultural set­ tings; im proved referral systems and collaboration betw een w est­ ern trained health care professionals and traditional healers; incor­ poration o f cultural issues surrounding health and illness into the training curricula o f health care professionals; and further re ­ search. It was also felt that the study was both relevant and timely, given the recent prom ulgation by the South African governm ent o f the Traditional Health Practitioners Bill in 2004, w hich is de­ signed to incorporate traditional practitioners into the formal healthcare system and regulate their practice (Keeton, 2004). m e t h o d o l o g y Aim The aim o f the study was to investigate the beliefs and practices o f caregivers and traditional healers w ithin the South African M uslim com m unity regarding Down syndrome. Objectives Objectives with respect to the caregivers were: 1. To obtain information regarding the time o f diagnosis, the person who conveyed the diagnosis, and participants’ under­ standing o f the term D ow n syndrome; 2. To probe personal and cultural beliefs regarding the aetiol­ ogy o f D own syndrome; 3. To elicit views regarding the m anagem ent o f D own syn­ drome w ith regard to the use o f traditional healing, medical approaches, speech-language therapy and audiology and other param edical interventions; 4. To ascertain whether caregivers had consulted w ith medical doctors, speech-language therapists and audiologists and other param edical professionals; and to explore their experi­ ences w ith these w estern trained professionals. Objectives with respect to the traditional healers were: 1. To elicit from the traditional healers, personal and cultural beliefs about the aetiology o f Down syndrome; 2. To examine the various m ethods used by the traditional heal­ ers to m anage/treat D own syndrome; 3. To probe attitudes o f traditional healers towards allopathic m edical practitioners and collaboration w ith western m edi­ cine; ; 4. To explore the views o f traditional healers regarding the rea­ sons for being approached by caregivers in relation to Down syndrome. Research design An exploratory-descriptive research design, incorporating a two-group, parallel study was employed. The rationale for adopt­ ing an exploratory-descriptive design was that it allowed explora­ tion o f a relatively unchartered area, while providing the opportu­ nity for obtaining a rich and detailed description o f M uslim tradi­ tional healing in relation to D own syndrom e (TerreBlanche & Durrheim, 1999). The two group, parallel study, enabled the re ­ searchers to conduct individual interviews w ith a group o f care­ givers and a group o f traditional healers and thereafter to com pare the findings and extract differences and similarities from the data. Due to tim e constraints, triangulation or the use o f m ultiple m eth­ ods (Denzin & Lincoln, 1998) was not undertaken and other m eth­ ods o f data collection were not selected. Participants A purposive, non-probability sample o f 10 caregivers o f children with Down syndrom e as w ell as 10 traditional healers was recruited from the Lenasia, G auteng area. W ithin the purposive sam pling paradigm , “snow ball sam pling” was em ployed. Prospec­ tive participants w ithin the M uslim com m unity were approached. T hey in turn were asked to obtain perm ission from other potential participants before giving their contact details to the researcher. A dvertisem ents were also placed in the local com m unity new spa­ per and on the Islamic radio station, inviting mem bers o f the M us­ lim com m unity to volunteer for participation in the study. H ow ­ ever, it is acknow ledged that using a volunteer sample m ay have introduced sources o f bias. P articipan t Inclusion Criteria The participants were required to be South African M us­ lims, as they were likely to have an understanding and knowledge o f the com m unity’s cultural beliefs that influence their decisions. Confirm ation o f the diagnosis o f Down syndrome needed to have been m ade by a medical practitioner. The 10 caregivers needed to be direct and prim ary caregivers o f the child with D own syndrome and could be any m em ber o f the affected individual’s immediate family. T he traditional healers needed to be specifically trained or to have acquired some years’ experience in traditional healing so that they w ould be able to com m ent on the type o f traditional heal­ ing approaches adopted in relation to Down syndrome. They also needed to have been consulted with respect to at least one person with D own syndrome. D escription o f Participants The caregivers were all female and w ere all o f Indian ex­ traction. Eight o f the caregivers were m others, one was a sister and one was a grandm other to the person with Down syndrome. The ages o f the caregivers ranged from 21 to 80 years. Five o f the indi­ viduals w ith Down syndrome were males and five w ere females and their ages ranged from one to 30 years. The traditional healers com prised five M oulanas, two Hakeems, two spiritual healers and one herbalist. N ine o f the h eal­ ers were m ale and one was female. In terms o f ethnic group, eight were Indian, one was Black and one was o f m ixed descent. The period o f time spent practising traditional healing ranged from two to 22 years. R esearch instrum entation The study incorporated two sem i-structured interview schedules presented in the form o f individual interviews. Copies o f the interview schedules for the caregivers and traditional healers are set out in A ppendices A and B respectively. Several o f the questions were adapted from studies by Bham & Ross (2005) and Badat (2003) and included both open and closed-ended items. Both schedules were divided into two sections, nam ely a section on biographical information and a section on inform ation pertain­ ing to beliefs and practices in relation to Down syndrome. Content validity o f the interview schedules appeared to be dem onstrated as sufficient aspects covering the content o f the topic were investigated. In addition, a university researcher who was fam iliar w ith the area o f traditional healing scrutinized the inter­ view schedules. This person was o f the opinion that the schedules The South African Journal o f Communication Disorders, Vol. 53, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) 30 Tasneem Dangor and Eleanor Ross had face validity as they appeared “on the face o f it” to measure w hat they purported to measure. Research Protocol Pre-testing the interview schedule A fter ethics clearance was obtained from the U niversity Ethics Committee for R esearch on Hum an Participants, the inter­ view schedules were pre-tested on persons with sim ilar characteris­ tics to the target group. These persons were excluded from partici­ pation in the final study. Due to difficulties experienced in recruit­ ing sufficient participants, pre-tests were conducted with only one M oulana and one caregiver. The pre-tests indicated that the inter­ view was fulfilling its purpose as the participants stated that they understood all the questions. Thus no am endm ents were made. Data collection Follow ing the pre-test, the inform ation sheets and consent form s were sent out to the prospective participants. The researcher contacted both caregivers and traditional healers by telephone and invited them to participate in the study. Individual appointments were made and thereafter, interviews were carried out with the traditional healers and caregivers. In order to com ply with M uslim traditions, the researcher who conducted the interview s attired her­ se lf in the appropriate M uslim dress for a female, w hich is a cloak and a head scarf, and was accom panied by a male figure to all in­ terviews with persons o f the opposite sex. She also used the appro­ priate greetings on arrival and on term inating the interviews. Interview s with caregivers an d traditional healers: All the interviews w ith the caregivers took place in the com ­ fort o f the participants’ hom es and at times that were convenient for them. M ost o f the interviews with the traditional healers were conducted in places w here the traditional healers usually consulted with their patients. These areas were in the yards or gardens, close to the traditional healers’ hom es or in their offices. A t the begin­ ning o f the interviews, participants were shown pictures o f children with D own syndrom e so as to ensure correct recognition o f the syndrome. A lthough the original intention was to audiotape the interviews, participants tended to be suspicious o f and resistant to this procedure. Hand w ritten field notes were therefore made o f all the responses provided by the participants. Data collection contin­ ued until 10 caregivers and 10 traditional healers had been inter­ viewed, because at this point data saturation appeared to have been achieved. A ccording to Leininger (1994 in M axwell & Satake, 2006), saturation implies that the researcher has perform ed a “thick” description in an exhaustive effort to extract as much m eaning as possible from the data until no m ore can be said about the topic. D ata Analysis The closed-ended items were analysed using descriptive statistics involving simple frequency counts, while semantic con­ tent analysis was applied to the open-ended questions in order to highligfit com m on them es expressed by participants. Content analysis is a research m ethod for assem bling and analysing the content o f a text (TerreBlanche & Durrheim, 1999). M orse (1994) has divided content analysis into two types, nam ely semantic con­ tent analysis (m anifest) and inferred content analysis (latent), se­ mantic sontent analysis is used to convey what the participants have said, while Inferred Content Analysis infers or goes beyond w hat was said or written. N eum an (2003) em phasises the need to ensure the trustwor­ thiness or truth value and authenticity o f the qualitative framework (com parable to the positivist notions o f validity and reliability) by adopting the criteria developed by Guba & Lincoln (1989), namely credibility, transferability, dependability and confirm ability. By using semantic rather than inferred content analysis, the researcher aim ed to establish credibility (paralleling internal validity) o f the data as representing the “real w orld” as perceived by the partici­ pants. In terms o f transferability (which is com parable to the posi­ tivist construct o f external validity or generalizability), it was an­ ticipated that the information obtained from this study would be applicable to other therapy situations as well as to professionals who encounter clients from the M uslim com m unity in South Af­ rica. In order to enhance dependability (the alternative to reliabil­ ity) o f data analysis, the same person conducted all the interviews and systematic steps adapted from TerreBlanche & Durrheim (1999) were followed. These steps included: firstly, familiarization and immersion, which involved putting into sim pler terms by means o f reading through, m aking notes, draw ing diagram s and brain storming to obtain a general idea o f the findings; secondly, inducing themes, w hich im plied inferring general rules or classes from specific instances in a bottom up process; thirdly, coding, w hich encom passed the m aking o f different sections o f data as being instances o f or relevant to one or more o f the researcher’s themes; fourthly, elaboration, w hich involved synthesising infor­ m ation in a linear sequence; and fifthly, analysing data, interpre­ tation and inspection which included going back to all the above steps to make sense o f the data. In order to reduce researcher bias and establish confirm ability (or objectivity) o f the data, correspon­ dence checking advocated by Pretorius & de la R ey (2004:31) was undertaken, whereby the prim ary researcher’s categorization o f them es was checked by her research supervisor for correspon­ dence. Once agreem ent had been reached regarding categorization o f themes, these were quantified. RESU LTS AND DISC U SSIO N PART ONE: Results from the interviews with the caregivers O rientation to the syndrom e I Time o f diagnosis Eight out o f the 10 caregivers stated that their children were diagnosed at birth. However, one participant stated thatithe first diagnosis was made during her pregnancy via an am niocentesis test. A nother mother reported that her son was only diagnosed about six months after birth. | Persons who m ade the diagnosis The entire sample that was interviewed stated that their children were diagnosed w ith D own syndrome by either a gynae­ cologist or a paediatrician. Understanding o f D own syndrom e Nine o f the participants appeared to be aware o f the main features and characteristics o f children with Down syndrome. Re­ sponses included: ‘Genetic disability with one less chromosome, M ongolian; L ow ears with w eak m uscle tone; D ry skin a n d prone to upper respiratory tract infections; F loppy child with stum p f i n ­ gers and two segm ents on the baby fin g er; Two years slow er than norm al children. Som e have a leaking heart a n d som e are mentally reta rd ed ’. However, a m other o f a four-year-old child with Down Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 53, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) Western and Traditional Medicine: Cultural Beliefs and Practices o f SA Muslims with regard to Down Syndrome 31 syndrome adm itted that she did n ot understand the m eaning o f the term Down syndrome. Genetic counselling Seven o f the 10 participants inform ed the researcher that they had not been for genetic counselling. One m other gave the following reason for refusing to go for genetic counselling: ‘As a M uslim I had a child a n d was never g oing to abort, thus I fo u n d it meaningless. A fter m y D ow n syndrom e son I had two p erfectly norm al twins. ’ In contrast, one m other found that the genetic coun­ selling was useful. "My fa th e r fin a lly accepted m y son, as m y f a ­ ther was very sensitive a n d defensive a n d sa id i f anyone sa w my son they w ould laugh. ’ Beliefs o f caregivers regarding the cause o f Down Syndrom e P ersonal beliefs regarding the aetiology o f D ow n syndrom e It should be noted that the participants tended to regard terms such as “heal” and “cure” as synonyms, w hile concepts such as “illness, disorder, disease, ailm ent and condition” were used interchangeably. A com m on b e lie f m entioned by five o f the participants was that all illnesses and birth conditions were due to G o d ’s will. This belief was sim ilar to findings by B ham & Ross (2005) that m any o f the M uslim participants w hom they interviewed felt that strokes were due to G od’s will. Two participants were convinced that the child was a gift from God and one must w illingly accept it and not question, ‘ Why me G o d ?' O ne m other stated: ‘This is a heaven special child and only fo rtu n a te peo p le g e t these children.' A further two participants attributed the cause o f the condition to genetic factors and understood the scenario o f Trisom y chrom osom es. Inter-m arriage was also related to genetic factors, as one o f the participants felt that if m arriages occurred between husbands and wives who were too closely related, the risk o f having a child with Down syndrome was high. One participant felt that the age o f the m other or father was one o f the causes o f Down syndrome. This idea is supported in the research literature as the maternal age related risk for Down Syndrome is low er at age 20 (one in 1734 births), but higher at age 35 (one in 386 births) (H arperv 1998). , I C ultural beliefs regarding the aetiology o f D ow n syndrom e In addition to personal beliefs regarding the aetiology o f Down syndrom e, caregivers were also asked i f they were aware o f the existence o f any cultural beliefs in their com m unities relating to this condition. Four o f the participants explained that according to their culture, having a child with a disability, such as D own syn­ drome, was regarded as a punishm ent from God. Punishm ent was directed to the m other, who was perceived to have committed wrong deeds in her past life. O ne caregiver em phasised that these were cultural beliefs, not Islamic beliefs. Furtherm ore, cultural beliefs assum ed by the com m unity were found to be closely linked to beliefs held by m any o f the participants themselves. This find­ ing was consistent with the results obtained by Bham & Ross (2005). Several o f the M uslim caregivers and traditional healers whom they interviewed m entioned cultural beliefs regarding stroke being a form o f punishment. Four o f the participants also suspected Jadu (evil curses) from fam ily and friends. O ne participant added: ‘These beliefs are myths which need to be eradicated fr o m our thought patterns. In line with these findings, D agher & Ross (2004) noted that the A fri­ can traditional healers in their study believed that cleft palate was caused by ancestors, spirits and witchcraft. In a sim ilar vein, three participants m entioned that m any people in their culture were u n ­ aware o f the cause o f D ow n syndrome. For example, one partici­ pant noted, ‘These ignorant p eo p le often laugh a t my son. ’ M anagem ent o f Down syndrom e Six o f the caregivers reported that they had consulted tradi­ tional healers regarding the m anagem ent o f their children with Down syndrome. Several o f the participants explained that m any o f the elderly mem bers o f their com m unities and fam ilies insisted on the use o f traditional healing. This finding was in line with the views expressed by those o f Tom oeda & Bayles (2002) who m ain­ tain that in collectivistic cultures such as those o f Indian M uslim s in South Africa, m embers o f the fam ily group tend to exert a direct influence on decisions about treatm ent options. One caregiver noted that her son was constantly being ad ­ m itted to hospital and that doctors had told her that he was not going to live long. She then approached a M oulana who gave her the tarweez and advised her to read a few verses from the Q uraan in order to improve his condition. 7 was happy with the results as my s o n 's condition im proved and he also stopped crying so much ’. A nother caregiver m entioned that she took her granddaughter to a M oulana. She reported that the M oulana had read from the Quraan for her granddaughter and thereafter her speech had becom e clearer. In this respect, it should be noted that traditional medicine has been shown to have several benefits, including reduced anxiety through a shared, unquestioned b e lie f in the powers o f the healer (H am m ond-Tooke, 1989). One o f the participants explained that she did n ot approach traditional healers as she and her husband felt that one should ask God directly for help. She added that she and her husband read from the Quraan on a daily basis and they had seen trem endous im provem ent in their daughter’s health. A nother participant shared a sim ilar view and encouraged people to read the Quraan daily, as it contained shifa (cure) and a m ercy for all mankind. One participant was convinced that her daughter was a gift from God and that she had to accept her the w ay she was. A nother participant explained that her brother was physically disabled and this factor m otivated her to take care o f G od’s creatures h erself and not seek cures for disabilities. One participant inform ed the researcher that a H akeem had provided him with a herbal ointm ent to strengthen his son’s legs. “Soon after treatm ent my son sta rted walking. H e also p ro vid ed m y son with a syrup f o r his constipation and this too was useful a n d I have lots o f fa ith in this H akeem A nother participant re­ ported that he approached a H akeem , not to cure his son o f Down syndrom e but m erely to get her rem edy for his heart condition. She provided a diet to follow which included goat’s m ilk and som e herbal powders. The father noted that his son lost w eight and he then discontinued the diet and was not satisfied w ith the h ealer’s managem ent. A nother participant explained that her H akeem had provided her with a herbal mixture in a liquid, but her son, who was very small at time, did not drink it. Thus she was not sure if it would have been effective. The caregivers’ attitudes towards western m edicine A pproaching M edical D octors] Six o f the caregivers stated that they had approached m edi­ cal doctors. These participants were convinced that the doctoi The South African Journal o f Communication Disorders, Vol. 53, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) 32 Tasneem Dangor and Eleanor Ross could assist them with this m edical condition. One o f participants explained that the doctor she approached was very encouraging and provided her with advice and m anagem ent strategies. A nother participant reported that her doctor introduced her to other m oth­ ers/caregivers o f children w ith Down syndrome, which helped her deal with her feelings towards her child and contributed to more effective care and m anagem ent o f the condition. Four parents stated that they had independently searched the internet and read books to assist them in the m anagem ent o f their children. T hey found the doctors to be unhelpful in terms o f giving advice, and lacking in counselling skills regarding dealing with parents’ feelings. A nother m other inform ed the researcher that her doctor had told her that her baby was going to be deaf. H owever, she explained that she and her husband used to read from the Quraan and that her daughter hears perfectly well. Conse­ quently, she no longer takes the doctors’ theories o r their progno­ ses in respect o f her child seriously, but perseveres with faith. A pproaching P aram edical Professionals O f all the participants who were interviewed, nine stated that they had approached speech-language therapists to assist in the rem ediation process o f their children with D own syndrome. A m ong the nine children who did attend therapy, seven were cur­ rently attending, either privately or at schools. All nine caregivers stated that they had experienced success in therapy. However, one m other explained that she term inated therapy as she felt that her son had reached a plateau at the age o f 12 years. Exam ples o f use­ ful aspects o f therapy included buying toys that depicted every day routines in order to facilitate basic identification; encouraging the child to vocalize and to expand his or her sentences; avoiding b aby talk; and using gestures to com plem ent verbal input. The im pression gained was that caregivers had insight into the speech- language therapy services provided for their children and had im­ plem ented the advice o f speech-language therapists. The one par­ ticipant who did not approach a speech-language therapist noted that her daughter started talking spontaneously and she therefore did not find the need for speech-language therapy intervention. N one o f the participants m entioned using audiological services. Five o f the caregivers reported that they had consulted with other param edical professionals including physiotherapists, occu­ pational therapists, paediatricians, cardiologists and counsellors. Those that had approached these param edical professionals re­ ported being satisfied with their services. However, two o f the caregivers m entioned that they did n ot find the need to seek pro­ fessional help as their children were developing adequately. Care­ givers articulated the view point that they felt m ore secure and re­ laxed about going to professionals who understood their culture and their use o f alternate remedies. PART TWO: R esults from the interview s w ith the traditional healers Ten traditional healers were interviewed, all o f who reported that they had treated children w ith Down syndrome. Beliefs regarding the cause o f Dons syndrom e P articipants’ views were elicited on the causes o f the Down syndrome as it was felt that the cause w ould reflect societal beliefs about the condition. Five o f the participants were o f the opinion that the aetiology o f D own syndrome could be attributed to ge­ netic factors. One o f the participants added that when family mem bers inter-m arry this behaviour also causes the child to be b o m with some kind o f anomaly. Five o f the participants attributed Down syndrom e to God’s will. T hey noted that babies that are bom with such a disorder are all in G o d ’s (A llah’s) hands and we should avoid questioning God. Furtherm ore, such an experience was considered a ‘test’ for the parents. ''Keep in m ind that sickness is given to the p a tie n t as a trial f o r the p a tie n t h im se lf or h e rse lf a n d f o r their f a m i l y This finding was consistent w ith the Islamic b e lie f that the rew ard in the life to com e is based on how one reacts to a ‘te st,’ nam ely how one treats a disabled child (Sakr, 1996). One participant also men­ tioned in passing that abortion, am niocentesis and sterilization were contrary to the teachings o f Islam. A further theme that em anated from the responses o f four o f the participants related to cultural beliefs in curses, also known as Jadu, and evil eyes o r evil spirits (Jinn) from other people. Hall (1994) suggests that some people are believed to have native pow­ ers, which they utilize together with medicines or charm s to inflict hurt on others. C am pbell (1998) maintains that supernatural and m agico-religious b e lie f systems distinctive to each culture, are often alien to and not easily understood by allopathic practitioners. Two out o f the 10 participants attributed the condition to an im balance betw een h ot and cold in the body, w hich caused the child to be b o m with Down syndrome. This im balance was re­ ferred to by the Hakeems as a disequilibrium in the b o d y ’s hu­ m oral system. It was believed that this im balance could have oc­ curred during the m other’s pregnancy. They believed that the prac­ tice o f looking at the symptoms in isolation, provided only short­ term relief, rather than long term healing. They thus advocated a m ulti-dim ensional approach, which took into account an under­ standing o f patients them selves, their life contexts and life styles, and finally the ways in w hich their spirit-m ind-body interacted w ith each other in an attem pt to achieve balance and healing, thereby attem pting to establish hom eostasis o f the spirit-mind- body. In this w ay one could heal the w hole patient and not just alleviate the symptoms. This type o f approach appeared to be de­ rived from Unani Tibb or Tibb, w hich is a holistic healing system based on the philosophies o f H ippocrates, the father o f western m edicine (Sykiotis, Kalliolias & Papavassiliou, 2006), and the well know n Islamic scholar, philosopher and physician Ibn Sina. Tibb is a type o f natural m edicine which takes into account the individ­ u a l’s body, mind and soul. Tibb was practised about 150 years ago and is the foundation on w hich m odem medicine is based. Unani Tibb is recognized in South Africa, largely due to it. being cost effective and providing an effective understanding o f the aetiology o f illness. The principles o f Tibb are in accordance with the Q uraan and the teachings o f the Prophet M uham m ed (Sina, 2004). It was clear that the traditional healers who were inter­ view ed were concerned w ith the reasons w hy a particular disease has occurred and that the search for causality was perceived to be one o f their greatest assets. In contrast with the finding that the traditional healers who were interviewed, were concerned with the reasons why a particular disorder had occurred, G reen (1988) sug­ gests that western m edical practitioners tend to show m ore concern w ith control as opposed to considering the root o f the problem. The im portance o f holistic healing highlighted by the two Hakeem s, is also shared by m any Black South African traditional healers, who believe that i f the m ind is healed the body takes care o f itse lf (D agher & Ross, 2004). This assum pti6n contrasts with that o f western medicine, w hich contends that i f the body is healed the m ind takes care o f itse lf (Hall, 1994). One o f the H akeem s noted that he usually asked h im self the follow ing questions derived from Selzer (2004) during his consul­ tations, namely: ’1) What does a symptom mean? 2) H ow should it Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 55, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) Western and Traditional Medicine: Cultural Beliefs and Practices o f SA Muslims with regard to Down Syndrome 33 be listened to? 3) What does this p a tie n t’s sym ptom mean in this particular p a tien t as opposed to another patient? 4) What does this sym ptom tell us about the totality o f this p a tie n t fr o m the sym p to m ’s picture? 5) H ow can I as a practitioner, be o f the greatest help to this p erson in his wholeness, a n d assist his soul- m ind body com plex to achieve its healing? ’ (Selzer, 2004:10). One o f the participants stated that the ruh (soul) asks God to be b o m in that state, i.e. with D ow n syndrome. He added that God provides healers and parents with the know ledge to cope with a child with D own syndrome. He further noted that G od pun- ! ishes the parents by giving them a child with D own syndrome, so that the parents can becom e more conscious o f God and becom e more loving. A fem ale spiritual healer attributed the aetiology o f Down syndrome to a virus, and believed that som ething had gone wrong in the m other’s womb. She explained that it was a natural devel­ opment and that there was a negative influence, w hich disturbed the developm ent o f the foetus. Inform ation regarding m anagem ent o f Dons syndrom e Three M oulanas indicated that they w ould provide the p a­ tient w ith a tarw eez (an inscription o f verses from the Q uraan on a | piece o f paper). A tarweez is usually w orn around the neck or | attached to the child’s clothing. The tarw eez serves to provide the child with protection against any evil and eradicates any evil pro- ! jected onto the child. One o f the moulanas noted, ‘For every ill­ ness there is a cure, and M uslim s are encouraged to believe in the unseen’. This participant also encouraged people to approach I m edical professionals for treatm ent as God has made them avail­ able in order to help people. A nother participant noted that he had used tarweez to help stabilize the child, and the child then started “thinking and talking” , i One M oulana m entioned that he gave his patients oils, w hich were either part o f a m ixture or on their own to be applied to the body and head. In addition, he provided them with five | different types o f seeds. H e encouraged them to drink alm ond milk, which he first prayed over. The M oulana also m entioned the i use o f holy w ater (w ater that he prayed over), which he provided to m ost o f his patients. A nother m ethod that he used was to advise his patients to put salt on their bodies at night, as it ‘cools the body and makes life easy ’. j The same M oulana m entioned the use o f honey in com bi- ; nation w ith hot water. He em phasised that honey was a cure for m any illnesses as stated b y the prophet Muhammed. j The Hakeems reported that they would exam ine the patient 1 and establish which hum our was [blocked or not functioning opti­ mally. Treatm ent included changing a certain aspect o f the tem- 1 peram ent o f one o f the four hum ours by providing herbal m edica­ tion. This herbal m edication often consisted o f an infusion o f powders that assisted in balancing the hum ours, attem pting to harness the b o d y ’s energy to treat itself. One o f the Hakeems noted that when the illness was evi­ dent from birth as in children with D own syndrome, eradicating or achieving hom eostasis o f spirit-m ind-body was impossible. In­ stead they assisted these children by providing m edication in the form o f herbs that m inim ized the degree o f the problem. He ex­ plained that he had once provided a child with D own syndrome with a herbal balm to aid his joint/w alking pains as the leg was i very cold. A nother point that he m entioned was that children with I D own syndrom e often straggled to talk as ‘the tongue was drier a n d colder than it should b e He therefore provided m edication to increase the moisture and heat |On the tongue and this process helped to increase blood flow to the tongue. He believed that this action made the tongue m ore mobile, thereby prom oting speech production. In addition, he stressed the fact that treatm ent was ‘holistically based taking into account the m o th er’s pregnancy, the child, the effect o f the condition and his environm ent’. Herbal treatm ent was identified by two o f the participants. A herbalist noted that he provided a child, w ith D ow n syndrome who had a severe hearing problem, w ith a herb m ixture in the form o f porridge, which the child had to eat every m orning. H e also provided him with a mixture, which he had to take in the m orning and at night. The herbalist stated that this child used to be hospitalised every m onth, but after his treatment, doctors were am azed at his im proved health. His m ain m edicines were made from plants, herbs and pow der o f seeds and roots, juices, leaves and minerals. On probing the specific herbs that the healer pre­ scribed for children with D own syndrome, he replied that it was his secret. Ham m ond-Tooke (1989) suggests that m any herbalists possess know ledge o f natural substances, which have an authentic rem edial effect but are n ot always w illing to share this know ledge out o f fear that this knowledge will be appropriated b y others - which highlights the need to protect the intellectual property rights o f traditional healers. One participant em phasised the fact that no m atter what approach to m anagem ent o r treatm ent a person pursued, success and recovery were all in G od’s hands. Two o f the participants believed that spiritual healing was a necessary procedure that had to be im plem ented as part o f the treatm ent o f D ow n syndrome. Firstly, perm ission is sought from God to w ork on the child. Thereafter they scan the body from the spiritual realm and then intervene via touch therapy. M any traditional healers believed that the cause o f D own syndrom e was due to evil spirits that had possessed the m other and the child. The spiritual healing is a process that helps to dispel the evil spirits and cleanse the patient. A nother spiritual healer m entioned that she w ould m eet both the m other and child and then clear the m other o f evil spirits that she had been carrying during pregnancy. She noted that her treatment, w hich included a com bination o f touch therapy, reiki, automatic writing and m as­ sage, helped to rem ove any negativity within the child or m other and assisted with various difficulties. One participant noted that counselling o f the parents forms an integral part o f his treatment. He dem onstrated to the parents how to approach their child with love, and com forted them by assisting them to deal w ith their spiritual needs. V iew s o f traditional healers regarding the reasons for being approached by caregivers o f children w ith Down syndrom e The issue o f culture and pressure from fam ily mem bers was strongly em phasized by eight participants. One healer noted that the elderly mem bers o f the M uslim com m unity tend to feel that alternative m ethods o f healing should be attempted. He ex­ plained that m any o f these elderly people have a strong b e lie f that some ailm ents are caused by unseen forces. They also believe that religion holds a cure for m any ailments, and can improve the well being o f the child. A nother participant shared a sim ilar view and stated that ‘many peo p le have fa ith in what their grandparents believed as they grew up strong a n d h e a lth y ’. This theme was articulated by four o f the healers. One o f the participants rem arked, ‘ We w ork with uncondi­ tional love. M any o f our peo p le maintain that modern doctors are g enerally in a hurry a n d they do not give enough time, care and The South African Journal o f Communication Disorders, Vol. 53, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) 34 Tasneem Dangor and Eleanor Ross attention, in contrast to traditional h ealers’. Several o f the tradi­ tional healers em phasized the im portance o f establishing a rela­ tionship of trust and unconditional positive regard with people w ho consulted them. This approach is similar to that advocated by m any western counselling professionals (e.g. Manning, 2001). T he argum ent p ut forw ard was that western doctors derived most o f their answers from the patient, whereas traditional healers con­ firm ed what their patients conveyed to them. A M oulana em pha­ sised the fact that h e took the tim e to converse with children with D own syndrom e as m any m ight be m entally handicapped. 7 g reet them and hear their stories and I see a little world open, beauty and not ju s t a child with Down syndrome. I m ake the child com fortable and make the child develop a liking towards me and build up his co nfidence’. Another participant explained that he sat with these children, was sensitive to their needs and paid par­ ticular attention to the w ay in which he addressed them. This them e of a holistic approach was encapsulated in the responses of four participants. One o f the H akeem s noted that caregivers tended to approach him m ore often than m edical pro­ fessionals as h e provided a holistic approach to assessm ent and treatment. A spiritual healer attributed the popularity o f her treat­ m ent to her approach being a com bination o f physical and spiri­ tual dimensions. This preference for a holistic approach to treat­ m ent was consistent with results docum ented by B ham & Ross (2005) and Badat (2003). Previous successful results with other patients was a com ­ m on them e m entioned by three participants. Thus these patients usually recom m ended other persons to their traditional healers. O ne o f the spiritual healers mentioned that she was well known w ithin her com m unity and i f the illness or condition recurs she goes back to the birth o f the child to discover the original cause. 'Moreover, ju s t like people have fa ith in certain doctors, they believe ou r hands are g o o d a t healing. M any peo p le perceive my approach a t a lower level and one that is m ore affordable. There has been a revolution in that many people approach traditional h ea lers’. T he herbalist stated: ‘H erbalists can help cure things, such as bone fra ctu res a n d we can also help control illnesses such as diabetes. Therefore we are successful like the doctors in treating people. Likewise, we are able to control a n d manage conditions such as Down syn d ro m e’. Three participants em phasized that when all else fails within the world o f m odem m edicine, people tend go back to their roots in order to find a cure. This finding is similar to the assertion by C am pbell (1998) that traditional healers are usually well respected, accepted and trusted by their com m unities be­ cause they are culturally and religiously congruent with their own beliefs and practices. One traditional healer expressed the view: ‘T hey com e for security; dependent on you for a cure .. .They usually com e and see us to alleviate them from guilt. They w ant some kind of rein­ forcem ent that it is not their fault’. Finally, one participant stated: ‘T hey think they’ve been cursed’. The traditional healers’ attitudes towards allopathic m edical practitioners and collaboration with w estern m edicine Nine out o f th e 10 traditional healers w ho were inter­ viewed reported that at som e point they had advised the parents o f children with Down syndrom e to approach a m edical doctor. O ne o f the participants expressed the view that he would like to w ork with doctors and therefore advised parents to approach Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 53, 2006 m edical practitioners. A spiritual healer reported that she had re­ ceived a prophecy to w ork with doctors. A nother participant ar­ ticulated the opinion that if his treatm ent was unsuccessful he then referred to doctors. In line with these findings, it has been noted that some traditional healers take a keen interest in primary health care training provided by m odern form al m edicine (van W yk, van O udtshoom & Gericke, 2003) Furtherm ore, a M oulana adm itted that Jadu was not always the cause o f the ch ild ’s condition and in these cases he would re­ fer to m edical professionals for help. Another M oulana mentioned that he regularly sat with doctors and consulted with them. Most o f the participants referred patients to doctors as they felt that some children needed surgery, particularly those with heart prob­ lems. In contrast, one o f th e Hakeems stated that he did not refer to medical doctors as m ost o f the patients that cam e to him had often given up hope and lost faith in m edical doctors as they had not experienced success with allopathic medicine. Five o f the participants had referred their patients to speech-language and hearing therapists. One participant reported that he had not referred to a speech-language therapist, because w henever a child had presented with a speech or language prob­ lem , his treatm ent had proved successful ‘and with time the child sta rted to talk in long sentences, understand better a n d his think­ ing po w er increased’. N ine o f the participants reported that they did not consult with other m edical or param edical professions. The time factor was noted to be one o f the reasons for not consulting with other w estern trained professionals. T he herbalist stated that he did not approach other professionals, as he preferred to control the child’s condition with the use o f herbs. T he entire group o f traditional healers who were inter­ viewed supported collaboration with health care professionals and expressed a keen interest in learning about m odem m edicine and the roles o f the various team mem bers involved in the rehabilita­ tion of the child with Down syndrome. They also felt that there was a need for the m odem world to be acquainted with traditional healing and that western professionals should respect this form of healing. For example, a spiritual healer stated that she would do her w ork and they (m edical doctors) would do theirs and the com­ bined effect was likely to produce optim al results for the patient. O ne participant stressed the fact that Islam proclaim s that we should go out and find a cure, because h e believed that for every disease there was a cure, thus alternative m ethods should be en­ couraged, including m edical doctors’ approaches to healing. A M oulana supported collaboration with western m edical profes­ sionals as he felt that a disorder can be both spiritual and medical in aetiology and hence both realm s can potentially help in differ­ ent ways. One Hakeem conveyed the view that his work included providing a balance with the hum ours, to m inim ize harm emanat­ ing from them and that other professionals were needed to aid the child with Down syndrom e in other avenues. For example, he stated ‘The speech-therapist will assist the child in her expertise o f language and sp e e c h ’. In fact, two o f the participants men­ tioned that at the tim e o f the study they were collaborating with western practitioners especially when surgery was required or when their m edicine was n ot healing their patients. However, one M oulana, although in favour o f collabora­ tive treatm ents, was som ew hat dubious about th e feasibility of collaboration as w estern m edicine often failed to appreciate the connection between the body and the soul. He also e x p r e s s e d deep concern regarding the negative views that he p e r c e i v e d m any m edical doctors to hold in relation to traditional healers a n d the services they offer. R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) Western and Traditional Medicine: Cultural Beliefs and Practices of SA Muslims with regard to Down Syndrome 35 SUM M A R Y OF M A IN FIN D IN G S, LIM ITATIO NS, R EC O M M ENDATIO NS A N D CONCLUSIO NS Sum m ary o f m ain findings In summary, com m on beliefs that em anated from both the caregivers and the traditional healers with reference to the cause o f Down syndrome, included the notion that this condition was genetic in origin and that such children were perceived to be a gift from God. Other frequent responses attributed Down syndrome to a punishm ent from God and also a result of Jadu (curses from people). Com m on treatm ent/m anagem ent approaches mentioned by both the caregivers and the traditional healers included the use o f tarweez and w ater that had been prayed over w hich was p ro ­ vided by M oulanas and spiritual healers, and herbal m edicines prescribed by Hakeems. Both groups em phasized the need to treat children with Down syndrom e with patience and unconditional positive regard, and to focus on their strengths. Some caregivers seemed reluctant to approach m edical doctors relative to tradi­ tional healers and this reluctance was attributed to their negative past experiences with medical practitioners. Furtherm ore, nine o f the caregivers had approached speech-language and hearing thera­ pists com pared to five o f the traditional healers. Both groups re­ ported m aking lim ited use o f other param edical professionals. T he main reasons given for consulting traditional healers were cultural beliefs and pressure from fam ily m em bers, their holistic view o f m anagem ent, and the personal nature o f their approaches. C ol­ laboration between m odem m edicine and traditional healing was advocated by alm ost all o f the traditional healers. H owever, these findings need to be critically evaluated. A critique o f the study revealed several lim itations. Lim itations Firstly, theorists such as Bhopal (1997) have questioned whether research in ethnicity and health is racist, unsound, or im ­ portant science. It is the contention o f the present w riters that such research can potentially enhance awareness of the beliefs and practices"of different groups in relation to traditional healing. Sec­ ondly, as the researcher who conducted the interviews was from the same religion and part o f the sam e South African com m unity as m any o f the participants, they took for granted the fact that she was acquainted with their cultural beliefs and practices, and con­ sequently failed to elaborate and provide explanations for m any o f their answers. Thirdly, as some cultural beliefs were seen to be sacred or even offensive to caregivers or the children concerned, participants were initially reluctant to adm it having such beliefs for exam ple, Jadu and the evil eye, and instead seemed to fam ish socially desirable responses. Only once the researcher was able to establish rapport with the participants, were some o f them able to adm it that they subscribed to such beliefs. A third lim itation re­ lated to the fact that participants were unw illing to allow the re ­ searcher to tape-record the interviews. She was therefore com ­ pelled to m ake hand written notes, which occasionally tended to detract from the flow o f the interviews. Fourthly, little inform a­ tion was given regarding the type o f herbs used for treatment. Pre­ sumably, the traditional healers felt that the researcher m ight ex­ pose their secrets to pharm acists and other persons who might ap­ propriate their knowledge. The fifth lim itation was related to the failure to use triangulation, which would have added rigor, breadth, and depth to the investigation (Denzin & Lincoln, 1998). Triangulation refers to the process o f “enhancing the value o f a theory by using m ultiple m ethods and perspectives to investigate the truth” (M axwell & Satake, 2006:7). A further limitation re ­ lates to the lack o f generalizability o f the data. However, a counter argum ent is that the issue o f generalizability is irrelevant to re­ search o f this nature as the purpose o f the study was n ot to obtain generalizable findings but rather to elicit a rich and thick descrip­ tion o f the phenom enon under investigation. R ecom m endations D espite these lim itations inherent in the research design and methodology, im portant recom m endations can be made in respect o f culturally sensitive rehabilitation practices in speech- language pathology and audiology; collaboration between western health care practitioners and traditional healers; theory and future research. C ulturally sensitive rehabilitation practices in speech-language p ath o lo g y a n d audiology A lthough the findings cannot be generalized to the entire South African M uslim community, they suggest that some m em ­ bers o f this com m unity tend to place a great deal o f em phasis on cultural and religious beliefs. It is therefore recom m ended that speech-language therapists and audiologists need to adopt cultur­ ally sensitive practices when m anaging children with D own syn­ drom e from this com m unity as cultural beliefs m ay influence how people perceive affected individuals and how they are treated or m anaged. For example, the M uslim belief that disability is from God, m ay im pact on the m anagem ent process and needs to be taken into consideration when undertaking diagnostic evaluations and planning therapy interventions with this client population. In addition, inform ation on treatm ent recom m ended by traditional healers is useful to western health care professionals, as they need to be aw are of other form s of treatm ent that parents m ay be utiliz­ ing as these interventions m ight be useful or harm ful when used in com bination with m odem medical treatm ent methods. Further­ m ore, the finding, regarding the influence o f elderly and extended fam ily m em bers, has im plications for both counselling and ther­ apy in term s o f the guilt which may be felt if certain remedies are not im plem ented or traditional healers are not consulted. Such findings also underscore the im portance of involving the extended fam ily in therapy and adopting fam ily-focused interventions. C ollaboration between western health care practitioners and traditional healers The fact that alm ost all o f the traditional healers who were interview ed supported collaboration with health care professionals and expressed a keen interest in learning about m odem medicine, highlights the need for collaboration between the these two sys­ tems o f medicine. However, the finding that very few o f the tradi­ tional healers m ade referrals to param edical professionals was possibly related to the fact that the participants were not know l­ edgeable about the services provided by these practitioners. T here would thus appear to be a need for these param edical profession­ als to create public awareness o f their services and the roles they can potentially play with respect to children with Down syn­ drome. M oreover, approxim ately 80% o f South Africans make use o f traditional healers and an estim ated 250 000 and 300 000 tradi­ tional healers are currently practising in South Africa. This wide­ spread use o f traditional m edicine has to do with issues o f afforda­ bility, cultural acceptability and accessibility (Du Plessis, 2003). It The South African Journal o f Communication Disorders, Vol. 53, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) 36 Tasneem Dangor and Eleanor Ross is therefore recom m ended that western health care practitioners be educated regarding the roles o f traditional healers and the m edi­ cines they use, so that there can be greater collaboration and m u­ tual respect. The South African health m inistry is currently looking for w ays to incorporate inform al medicine into the formal health sector, and the recent prom ulgation o f the Traditional Health Prac­ titioners Bill (2004) is designed to facilitate this process. Theory and F uture R esearch This exploratory-descriptive study represents an effort, in some small m easure, to enhance theoretical understanding o f the South African M uslim com m unity’s m ultifaceted approach to health, illness and disability. However, while respecting these cul­ tural beliefs and practices, one cannot endorse their effectiveness without further evidence-based research. M oreover, in view o f the fact that the small sample size and the use o f snowball sampling precluded generalization o f results to the broader population o f caregivers and traditional healers, it is recom m ended that this re­ search be replicated on a larger, more representative sample. Given the point raised by one o f the traditional healers regarding the ap­ parent contradiction o f such practices as abortion, sterilization and amniocentesis, w ith the teachings o f Islam, future researchers need to explore the views o f traditional versus western health care pro­ fessionals regarding the ethics o f traditional healing and western health care in relation to these practices. Finally, it w ould seem to be an opportune time to begin the process o f m onitoring the im ple­ m entation o f the new Traditional Health Practitioners Bill in South A frica and assessing its effectiveness in prom oting collaboration between western m edicine and traditional healing over the next few years. In conclusion, the findings that several participants attrib­ uted Down syndrom e to genetic factors as well as G od’s will, and m any o f the traditional healers had referred patients to western professionals, suggests a degree o f medical syncretism whereby “biom edical know ledge transm itted in health m essages coexists, interacts and merges w ith local pre-existing ideas and lo­ gics” (M uela et al., 2002:403). M oreover, the fact that M uslim hum oral medicine is partly rooted in the writings o f Hippocrates, the father o f w estern m edicine (Sykiotis et al., 2006), coupled with the finding that m any o f the caregivers in the present study utilized both eastern and w estern medicine, and all the traditional healers who were interviewed were in favour o f collaboration, suggests that these two systems do not necessarily represent incom m ensur­ able paradigm s but can potentially fulfil com plem entary functions. Hence, both approaches need to be taken into consideration by speech-language therapists and audiologists seeking to render cul­ turally sensitive services to clients from the South A frican M uslim REFERENCES Anneren, G., & Pueschel, S.M. (1996). Preventative medical care. In B. Stratford. & P. Gunn, (Eds), New approaches to Down syndrome. London: Casse, 143-153. Badat, S. (2003). The approaches o f Moulanas within the South African Muslim community towards cleft lip and palate. Unpublished Hon­ ours Research Report submitted for the degree B.A Speech and Hearing Therapy. .Johannesburg: University of Witwatersrand. Battle, D.E. (2002). Communication disorders in multicultural popula­ tions. Boston, Massachusetts: Butterworth Heinemann. Bayanzadeth, S.A., Bolhari, J., Ghasemabadi, R.N., & Ramasani, (1997). Mental health in the Verses o f the Holy Quraan fo r mental health and schools staff. Iran: Iran University o f Medical Sciences. Bernstein, D.K., & Tiegerman. E. (1999). Language and communication disorders in children. (2nd Edition). New York: MacMillan Pub­ lishing Company. Bham, Z., & Ross, E. (2005). Traditional and western medicine: Cultural beliefs and practices of South African Indian Muslims with re­ gard to stroke. Ethnicity and Disease, 15, 548-554. Bhopal, R. (1997). Is research in ethnicity and health racist, unsound, or important science? British Medical Journal, 314, 1751. Burack, J.A., Hodapp, R.M., & Zigler, E. (1998). Developmental ap­ proaches to mental retardation: A short introduction. In J.A. Burack., R.M. Hodapp., & E. Zigler (Eds.). Handbook o f mental retardation and development. Cambridge: Cambridge University Press. Campbell, S.S. (1998). Called to heal: Traditional healing meets mod­ ern medicine in Southern Africa Today. Johannesburg: Zebra Press. Chalmers, B. (1996). Western and African conceptualisations o f health. Psychology o f Health 1996,12: 1-10. Christianson, AL. (1995). Clinical features o f African neonates with Down syndrome. East African Journal, 72(5): 306-310. Dagher, D., & Ross, E. (2004). Approaches of South African traditional healers regarding the treatment of cleft lip and palate. The Cleft Palate-Craniofacial Journal, 41 (5), 461-469. Davis-McFarland, E. (2002). Off the rack or cut to order? Creating proper cultural fit. The ASHA Leader, 7(6), 13. Desai, S.A. (1998). Taleemul Haq. Madressah Dawatul Haq, Umzinto: Dawatul Haq Publishers. de Andrade, V.M, & Ross, E. (2005). Beliefs and practices of Black South African traditional healers regarding hearing impairment. International Journal o f Audiology, 44, 489-499. Denzin, N.K., & Lincoln, Y.S. (Eds.). (1998). The landscape o f qualita­ tive research. Thousand Oaks: Sage. Du Plessis, K. (2003). Turning to tradition. Perspective: African Journal o f HIV/AIDS 2003, 5: 102-107. Green, E.C. (1988). Collaborative programs for traditional healers in primary health care and family planning in Africa. African Medi­ cine in the Modem World, 27:117-144. Guba, E. G., & Lincoln, Y. S. (1989). Fourth generation evaluation. Newbury Park, CA: Sage. Hall, J. (1994). Sangoma. New York: G.P. Putman & Sons. ; Hammond-Tooke, D. (1989). Rituals and medicines: Indigenous healing in South Africa. Johannesburg: Donker. 1 Harper, P.S. (1998). Practical genetic counselling, (5thedition). Boston, MA: Butterworth Heinemann. 1 Jauziyah, Al Qaiyim. (1999). Healing with the medicine o f the Prophet. Riyadh: Darussalam. Keeton, C. (2004). Sangomas to join formal medical fraternity. The Sun­ day Times. 9 May, p. 4. Manning. W.H. (2001). Clinical decision-making in fluency disorders. (2nd Edition.) San Diego, CA: Singular. Maxwell, D.L. & Satake, E. (2006). Research and 'statistical methods in communication sciences and disorders. Canada: Thomson Learning. Morse, J.M. (1994). Critical issues'in qualitative research methods. London: Sage Publications. Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 53, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) Western and Traditional Medicine: Cultural Beliefs and Practices o f SA Muslims with regard to Down Syndrome 3 7 Muela, S.H., Ribera, J.M., Mushi, A.K., & Tanner, M. (2002). Medical syncretism with reference to malaria in a Tanzanian community. Social Science and Medicine, 55 (3): 403-413. Neuman, W.L. (2003). Social research methods: Qualitative and quanti­ tative approaches. 5th Edition) Boston, MA: Allyn & Bacon. Pennington. B.F, & Bennetto, L. (1988). Toward a neuro-psychology o f mental retardation. In J.A.Burack, R.M. Hodapp, & E. Zigler (Eds.). Handbook o f mental retardation and development. Lon­ don: Cambridge University Press. Platsky, R., & Girson, J. (1993). Indigenous healers and stuttering. The South African Journal o f Communication Disorders, 40:43-48. Pretorius, T., & de la Rey, C. (2004). Chapter 2 - A brief introduction to research approaches in psychology. In L. Schwartz, C. de la Rey, & N. Duncan (Eds.). Psy­ chology: An introduction. Cape Town: Oxford University Press. Reed, V.A. (1994). An Introduction to children with language disorders (2nd Edition). New York, Merrill Toronto: MacMillan College Publishing Company. Ross, E., & Deverell, A. (2004). Psychosocial approaches to health, illness and disability: A reader fo r health care professionals. Pretoria: Van Schaik. Said, E. (1995). Orientalism: Western conceptions o f the orient. London: Penguin Books. Sakr, A.H. (1996). Family values In Islam. Canada: International Islamic Publishing House. Seltzer,A. (2004). Natural health promotes healing with harmony. Muslim View,s May 2004. Cape Town: University of Western Cape. Sina, I. (2004). Hakims’ holistic approach to health. Muslim Views, Cape Town: University of Western Cape. Sykiotis, G.P., Kalliolias, G.D., & Papavassiliou, A.G. (2006). Hippo­ crates and genomic medicine. Archives o f Medical Research, 37, 1, 181-183. TerreBlanche, M, & Durrheim, K. (1999). Research in practice: Applied methods fo r the social sciences. Cape Town: University of Cape Town Press. The National Down Syndrome Society. Retrieved on 5th May 2004 from htttp://www.pcsltd.com/ndss/ Tjale, A., & de Villiers, L. (Eds.). (2004). Cultural issues in health and health care: A resource fo r Southern Africa. Cape Town: Juta. Tomoeda, C.K., & Bayles, K.A. (2002). Cultivating cultural competence in the workplace, classroom and clinic. ASHA Leader, 7 (60): 4. Van Wyk, B.E, Van Oudtshoom, B, Gericke, N. (2003). Medicinal plants o f South Africa. Pretoria: Briza. World Health Organisation. (1978). The Alma-Ata conference on pri­ mary health care. WHO Chronicle, 32: 409-430. World Health Organization (WHO). (2002). Towards a common lan­ guage fo r functioning, disability and health (ICF). Retrieved on 12th September 2003 from http://www.who.int/icl7beginners/bg/ pdf. The South African Journal o f Communication Disorders, Vol. 53, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) http://www.pcsltd.com/ndss/ http://www.who.int/icl7beginners/bg/ 38 Tasneem Dangor and Eleanor Ross APPENDIX A I n t e r v i e w s c h e d u le f o r c a r e g i v e r s Section A - Biographical Information Gender of caregiver: Age of individual with Down syndrome: Relation of caregiver to individual with Down syndrome: Section B - Information relating to Down Syndrome Orientation to the syndrome 1. When was__________ first diagnosed with Down syndrome? 2. Who made the diagnosis? 3. What do you understand by the term Down syndrome? 4. Has anyone explained the features of this syndrome to you? Please explain. 5. Have you received any genetic counselling? Beliefs regarding causation 6 . What do you believe is the cause of Down syndrome? 7. What do people in your culture generally believe causes Down syndrome? Management of the syndrome 8. With regard to the person with Down syndrome that you take care of, did you approach any traditional healer such as a Moulana or Hakeem? 9. If yes, what advice, treatment or management did he or she rec­ ommend? 10. Did the advice/management that he or she recommended, meet your expectations. In other words were you satisfied? 11. If you did not approach a traditional healer, was there any reason for not approaching a traditional healer? 12. Did you approach a medical doctor? 13. If so, please describe the advice / management approach that he or she recommended and your degree of satisfaction with such ad­ vice. 14. Did you consult any other medical or paramedical professionals? 15. If so, please state which professionals you consulted and describe the management approaches they recommended. 16. Did you approach a speech-language and hearing therapist? 17. If so, please describe the advice / management that he or she rec­ ommended and your degree of satisfaction with such advice. 18. If you did not consult with a speech-language and hearing thera­ pist, was there any reason for not consulting such a professional? 19. Are there any other views or comments you would like to share with me in relation to caring for a person with Down syndrome? APPENDIX B Interview schedule for traditional healers Section A - Biographical Information Gender: Type o f healer: Number o f years practising as a healer: Section B - Information relating to Down syndrome Beliefs regarding causation 1. What do you believe is the cause o f Down syndrome? 2. What do people in your culture generally believe causes Down syndrome? Management of the syndrome 3. Have you ever been consulted regarding a child with Down syndrome? 4. I f yes, please can you explain the type o f advice, management or treatment that you provide for such children? 5. Have you ever advised parents o f children with D own syn­ drome to approach a medical doctor? 6 . Have you ever referred any o f these children to a speech- language and hearing therapist? 7. Have you ever consulted with any other medical or paramedi­ cal professionals with regard to children with D own syndrome? General 8 . Do you feel that traditional healers and western trained profes­ sionals such as doctors and therapists can work collaboratively to treat / manage children with Down syndrome? Please ex­ plain. 9. What are the reasons you think parents/caregivers o f children with Down syndrome consult with you instead of, or in addi­ tion to western medical practitioners? 10. D o you have any other view s or comments you would like to share with me in relation to the treatment or management o f individuals with Down syndrome? 1 Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 53, 2006 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. )