R e s e a r c h A r t i c l e T h e P r o b l e m s E x p e r ie n c e d B y B l a c k S t r o k e Pa t ie n t s in S o w e t o , S o u t h A f r ic a A B S T R A C T : A p u r p o s e fu l s a m p le o f B la c k S o w e ta n r e s id e n ts w h o h a d s u s ta in e d a s tr o k e w ere s tu d ie d to id e n tify th e p r o b le m s th e y w ere e n c o u n te r in g a fte r d isc h a r g e b a c k to th e ir h o m es. A d e s c r ip tiv e q u a li­ ta tiv e a p p r o a c h w a s u s e d c o m p r is in g s e m i-s tr u c tu r e d in te r v ie w s in th e s u b je c ts ’ h o m e s. A u d io r e c o r d e d d a ta w a s tr a n s c r ib e d in exte n so , a n d c o d e d in to th e m e s. T h e d a ta r e v e a le d th a t th e s u b j e c t s ’ la c k e d k n o w le d g e o f th e ir d is e a s e p r o c e s s e s . H o w ever, m e d ic a tio n n o n - c o m ­ p lia n c e w a s la rg e ly d u e to f i n a n c i a l a n d tr a n s p o r ta tio n d iffic u ltie s in a tte n d in g clin ic s. A lth o u g h m o s t o f th e s a m p le w a s a b le to w alk, th e y f e l t th e n e e d f o r im p r o v e d w a lk in g a b ility, a s th e y w e re s c a r e d o f fa llin g . M o s t w e re in d e p e n ­ d e n t in A D L , y e t they, a n d th e ir f a m i l i e s p e r c e iv e d th e m to b e o th e rw ise , le a v in g th e s u b je c ts w ith a s e n s e o f w o r th ­ le ssn e ss. P a in in th e s h o u ld e r a n d s tiffn e s s w e re th e c o m m o n s e c o n d a r y p r o b le m s e n c o u n te re d . T h ere is a n e e d to e d u c a te s tro k e v ic tim s w ith re g a rd s to th e ir d ise a se , i t ’s s e c o n d a r y c o m p lic a tio n s a n d th e ir c a p a b ilitie s fo llo w in g stro ke. S a fe w a lk in g m u s t b e e n s u r e d b e fo re d isc h a rg e . HALE LA\ EALES CJ', STEWART A \ FRITZ VU 2 1 Department of Physiotherapy, University of the Witwatersrand, Johannesburg 2 Department of Neurology, University of the Witwatersrand, Johannesburg K E Y W O R D S : S T R O K E , P R O B L E M S , E D U C A T IO N INTRODUCTION “In rehabilitation we seem to be rela­ tively successful in understanding what life experiences mean to our patients, so long as they are people like ourselves who share the m iddle-class American belief that one should value indepen­ dence. We may have great difficulty, however, when working with persons who do not share this cultural belief and whose life experiences have been based on an interdependent pattern of working co-operatively with others in perform ing many life activities... It is the indivi­ d ual’s experience o f disability as inter­ preted within his or her personal world, not medical status or biology, that gives meaning to the actions o f rehabilitation” (Spencer, 1993). P re se n t stro k e re h a b ilita tio n p ro ­ gram m es in South Africa may be inap­ propriate (Hale and Wallner, 1996). To redress the situation, a survey is being conducted in Soweto, South Africa to CORRESPONDENCE: M rs LA Hale Physiotherapy Department, Faculty of Health Sciences U niversity o f the W itwatersrand 7 York Road, Parktown, 2193, South Africa ascertain the problem s facing stroke victim s post-discharge. A specifically designed q u estionnaire is being used in a structured interview process (Hale et al, 1998a). This questionnaire is based on the training and experiences o f one of the authors, and thus may reflect this author’s perceptions o f the problems, and not those o f the subjects. This emic approach which is the author’s percep­ tion o f reality, may in fact not be the reality o f the situation, this would then be the etic approach. The author may be biased by the training received via curricula developed out o f the environ­ mental context o f the subjects being investigated. The designed questionnaire, although useful from a qu an titativ e aspect, may not be identifying issues that the subjects them selves may feel are important. Phenom enology was a philosophical approach to research that developed in the mid-1800s in Germany. This approach attem pted to understand social pheno­ mena or human activity from the view ­ point o f the person being studied. The term w as la te r re fin e d to th a t o f hermeneutics, Herm es being a G reek god who acted as an interpreter (Shepard et al, 1993). Inclusion o f a hermeneutic perspective to a survey o f this nature was considered essential. The phenom enologist believes that individuals need to be understood in their entirety within a situational context, not sep arated from the en v iro n m e n t in w hich they function (Shepard et al, 1993). Thus the qualitative aspect o f this survey should be in the form o f in-depth interviews conducted in the subject’s homes by the researchers themselves. RESEARCH QUESTION To concep tu alise and d escribe the problem s encountered by Black Sowetan residents who had sustained strokes and were now back living in their homes. CONCEPTUAL FRAMEWORK Figure 1 conceptualises the authors’ perception o f the problem s facing Sowe­ tan stroke victims. SAMPLE In qualitative research, the m ethod of purposeful sam pling is em ployed. Sub­ jects are strategically chosen for a spe­ cific purpose, rather than random ly as in the case o f quantitative research. Few er subjects are used than in qualitativ e research, as data is accum ulated in depth rather than in quantity. It is difficult to predict how many subjects are required to be sam pled, as it depends on the thickness o f know ledge gained from 12 SA J o u r n a l o f P h ysio th e ra p y 1999 V o l 55 No 2 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 3. ) FIGURE 1: INITIAL CONCEPTUAL FRAMEWORK MEDICAL PROBLEMS Impairment | Disability Handicap | | Understanding | • contractures • pain • pressure sores • poor general health • dependent for ADL • not able to get • unable to sit alone out of the home • unable to get out of bed • unable to w alk SOCIOECONO M IC PROBLEMS * lack of understanding of the disease Home Environment Socialisation 1 1 Economic 1 • outside toilet • no electricity • no running water inside the home • bed on floor • live alone * • no caregiver • • no friends visiting • • nothing to do all d a y poor financial situation no money for transport no money for food each individual subject. S am pling is com pleted when researchers feel that they have an in-depth knowledge of the phenom enon being studied. Stroke victims had been identified from the medical admissions ward o f the CH Baragw anath Hospital for inclusion into the quantitative survey mentioned above. The identified subjects had been interview ed in their hom es at three months post-discharge. Subjects having the following problems were identified: - Those who were unable to walk out side o f their homes - Those who were unable to use their affected arm functionally - Those who indicated from the initial interview that they had one or more of the following impairments: pain, pres­ sure sores, or contractures Subjects were purposefully sampled in order to gain a better understanding o f their problems. Additional criteria were that the sub­ je c t should own a telephone and live in form al housing. The reasoning for this was logistical, so that appointments could be m ade, and addresses easily found. The setting up o f appointm ents aided the organisation o f the project. METHODOLOGY The first step o f the study involved bracketing. The interviewing author spent time with a trained qualitative researcher w ho was not involved in the present study. During this time the interviewing author attempted to explain all the prob­ lems she perceived the sam ple group were experiencing (see Diagram 1: The Initial Conceptual Framework). The idea is then to “box” or bracket these thoughts so that they do not interfere with the actual interviews. In other words, when interviewing the subjects, the interviewer must listen to the subjects without inter­ jecting her (the interviewer’s) perceptions. T he interviewing author, realising her lim itations at conducting in-depth inter­ views without know ledge o f the local languages or customs, identified a resi­ d ent o f Sow eto w ho was w illing to accompany her. He obtained informed consent from the subjects and set up interviews with them. He also acted as a guide, as it is difficult to find your way around Soweto as a non-resident. Two final year physiotherapy students were included in the first two interviews in o rd e r to o b tain th eir in d ep en d en t observations as additional triangulation o f data. The students were instructed to write up their observations o f the visits independently. One student was asked to concentrate on observing the home envi­ ronment, while the other student focussed on the subject’s non-verbal com m unica­ tions, which is not registered by an audio­ tape recording (In order to prevent bias, the interviewing author only read the student observations after she had stud­ ied the taped interviews.) On arrival at the subject’s home, the custom ary introductions and greetings were exchanged. Verbal inform ed con­ sent for the visit was confirm ed, as well as perm ission to an audiotape recording o f the interview . T his perm ission was repeated for the records once the tape was running. T he interview was conducted and taped by the interview ing author inside the home o f the subject, most frequently in their living room s, with all concerned seated comfortably. The interpreter and the students only interjected if a transla­ tion was required. They were given an opportunity at the end o f the interview to ask any questions o f their own. Although this was an unstructured interview, the subject being allowed to speak at will, a few questions were pre-set in order to initiate the conversation, for example: “W hat would you really like to be able to do?” ; “W hat would you like help with m ost?” ; and “W hat w orries you most about your stroke?” T he audiotapes were transcribed in extenso by an independent party. T he data was analysed using pheno- menographic m ethodology (M erriman, 1988; Strauss and Corbin, 1990). Line by line analysis o f the transcripts was done to establish com m on concepts. These concepts were then grouped into categories, and coded in such a way as to reduce the data (open coding). Axial coding was then undertaken to make connections between the categories in the open coding so that the most important them es in the data could be identified. RESULTS Using the selection criteria described above, thirteen subjects were identified for the qualitative interviews. However, S A Jo u r n a l o f P h y s io t h e r a p y 1 9 9 9 V o l 5 5 No 2 13 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 3. ) TABLE 1: DISABILITY PROFILE OF THE SUBJECTS Barthel Index Score1 (scored out of 20] Severity at discharge^ Ambulant at time of qualitative interview RM 4 dense no JN 12 mild yes MK 17 mild yes SM 11 mild yes AM 11 dense no Lim 9 mild yes GK 15 moderate yes EM 14 moderate yes ER 19 moderate yes it was subsequently found that four o f them had passed away. Having conducted nine qualitative interviews it was felt that sufficient data had been obtained. The age o f the subjects ranged from 44 - 76 years, with a mean age o f 64 years. The group com prised two males and seven females, o f whom five subjects had sus­ tained a right cerebrovascular accident and four, a left. The disability profile of the subjects can be seen in Table I . In all subjects, English was not their home language. DETERMINING TRUSTWORTHINESS OF THE DATA Trustworthiness or the reliability o f data was determined by the following methods: 1.Use o f thick descriptions built on low inference data, the exact language of the interview s was analysed, for example: “Stroke is a fu n n y thing, you c a n ’t know anything, / d o n ’t know where tha t it com es fro m . ” 2. Triangulation o f the data was obtained by looking for sim ilarities found in m ultiple data sources: that obtained from the qualitative interviews; the structured interviews performed in the quantitative survey at three months post-discharge (Hale et al, 1998a); data from the hospital medical records; and the recorded observations o f accom ­ panying physiotherapy students. C on­ sistency was found in the majority of cases. 4. M ultiple subjects were interviewed. 5. R eliability check o f data coding. Inter­ reliability tests were carried out on all nine interviews by a second researcher, trained in q u alitative research. An average agreem ent o f 87% with the original categorisation was found. A few categories were changed after some discussion by the coders. This ensured that the codes were understandable, exhaustive, m utually exclusive and independent. Unfortunately it was not possible to return to Soweto to enable the subjects to check (m em ber check) the transcrip­ tions o f their interviews. THEMES Lack of knowledge regarding their condition A recurring them e with most o f the subjects interviewed was their lack of knowledge regarding their condition and its treatment. They all knew that they had had a stroke, how ever five o f the subjects were not sure what the cause of the stroke was. The conversation went much like this: Question: “Do you know why you had the stroke?" Answer: “No. ” Question: “Do you know what caused it? ” Answer: “No I d o n ’t know .” Question: “D id the d o c to r ’s tell you why ? ” Answer: “The high blood. ” Question: “Do you think that caused your stroke?” Answer: “I d o n ’t think so. ” And from another subject: Question: “A n d do you think that the high blood pressure has any thing to do with your stroke?” Answer: “/ d o n ’t think so, / d o n ’t know, it ju s t happened. ” One subject was sure that his stroke was due to hypertension and the fact that he had run out o f m edication which he simply could not afford. He lived in the best home o f all, read a lot and listened all day to talk shows on the radio, imply­ ing perhaps that his general education was better, and thus, perceivably his understanding o f his condition. One sub­ ject thought that his stroke might have been due to hypertension, but he felt it was more likely due to his heavy smok­ ing. Again, this subject appeared more educated than the others. He also said that he had given up smoking: “/ c a n ’t fo rce the thing that wants to kill me. ” Six o f the subjects felt that their stroke was due to stress and w orry (p atien ts’ own words) _ “When I had the stroke maybe / was worried because o f my elder son. He was in jail, / was worried about h im ” _ “The d o c to r ’s say to me tha t I am thinking too much. Yes, I was worried about my mother. ” _ “I think it was because I was too wor­ ried about my daughter" _ “/ had one because I was thinking too much - I had a lot o f worries at the time. ” _ “I was thinking a lot, a lot o f prob­ lems. I h a d pro b lem s a b out m y late daughter. ” One subject was not even aware she was hypertensive. Her granddaughter knew and monitored her medication. She had no idea o f the cause o f her stroke: “Really / d o n ’t know what is a stroke. I d o n ’t know what has happened. Me, I said m aybe because every day I have got what I call the feeling. Maybe it is that fe e lin g there. ” All nine subjects were hypertensive. They were all on medication, and vaguely knew what it was for. They knew that they had to take their medication. Non- com p lian ce was usually due to the inability to get to the clinics and a lack o f finances. O ne lady lived around the corner from the clinic, but being unable to walk had to order a taxi to fetch her from the house. The taxi then had to wait at the clinic till she was finished in order to bring her back. This cost her R20.00, a substantial am ount for an old age pen­ sioner (she had not being getting her pension for a few months). 14 SA Jo u r n a l o f P h y s i o t h e r a p y 1999 V o l 55 No 2 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 3. ) Gait Seven of the nine subjects could walk, most o f them with the assistance o f a stick. Two subjects were bedridden. A com m on thread to this theme was a great fear o f falling, especially while alone in the home. They felt strongly that: “I sh o u ld n ’t be alone in the h o u se ”. Walking to an outside toilet appeared to be a good test o f a person’s gait capa­ bility. All had to negotiate one or two steps from their kitchen doors, then walk a few metres along a path o f impacted (hard) soil to the toilet (all were o f the raised, flushing variety). Although six out o f nine subjects with outside toilets were able to walk with a stick, two felt that they had to have stand-by assistance in ord er to w alk to the toilet. All the others were independent. In spite o f this functional w alking ability, six o f the subjects expressed the desire to be able to walk better: “I would like them to help me with my walking. I would like to walk like normal people, I can walk but I am not happy with the way I w a lk ”, and yet another: “I want to walk, I want to move, I c a n ’t sit still the whole time ”. “I am worrying, but maybe i f I can have a stick I can walk better - I need a big stic k ”. One of the bed-bound subject’s greatest wish was to walk: “That I should be able to walk at least. I must he able to walk. ” Activities .of daily living (ADL) With the exception o f the bed-bound subjects, most o f the subjects were inde­ pendent in ADL. Three needed help with washing (especially with washing the non-affected arm). One had been unable to wash herself for awhile, and was extrem ely relieved that she could now manage: “It is a shame fo r my children to wash my body. ” Dressing is another ADL task that required help ( three sub­ jects): one subject complained of being unable to lift up her arms, and one lady said that she stays in her nightgown all the time, as it is the easiest piece of clothing to put on. Although most subjects were indepen­ dent in ADL, they were concerned about their perceived loss of independence: “I c a n ’t do nothing. I c a n ’t do anything because I c a n ’t walk, I c a n ’t ju s t move myself. I have got to be helped all the time. ” And yet another subject: “I said no I am not here to say ‘p le a s e '. In the night that worries me. ” In other words, she was determ ined to be independent, but worried that she could not actually manage. Upper limb function Interestingly enough, five o f the sub­ jects had voluntary m ovement o f the hand, which they appeared to try to use. A few expressed the desire to be able to use their hands: “It is only the hand, it can ju s t be that I can even p ic k it up or to move it. ” and “the hands they m ust hold. ” However, the desire for improved gait function was mentioned far more than that o f regaining upper limb function. SECONDARY COMPLICATIONS OF THE STROKE: The main secondary com plications were pain, swelling o f the feet, and stiff­ ness. Three o f the subjects com plained of stiffness in the upper limb, and had the potential to develope contractures: “I fe e l stiff, stiff, i f I want to stretch m y se lf I c a n ’t stretch, and I ju s t s i t ”. Only one subject suffered from pressure sores, the old bed-bound lady with dia­ betes. The daughters were struggling to heal them , their m other being very immobile and obese. They did, however, have an understanding regarding pres­ sure sore development. Shoulder pain, and sometimes hand and elbow pain was a frequent complaint. Seven subjects com plained o f having shoulder pain. Two subjects complained o f pain in the knee, especially on w alk­ ing. They also com plained of their hips feeling “loose” , the exact meaning o f this was not elicited: “The main thing is my hip. I think it is loose because when I step it is shaking like th is ”. THE PSYCHOSOCIAL OUTCOMES Housework M ost o f the subjects were not able to help much in the home, and this was of great concern to some of them: “I always fig h t with my fam ily, let me do som e­ thing, not ju s t s i t ”. Some helped with washing the dishes whilst sitting down; others could make their beds and make simple meals or a cup of tea in the kitchen. They washed their own under­ wear, although hanging it up was often a problem. There was a great desire to be useful: “N ow I am sa d f o r m y s e lf because when I cou ld do things f o r myself, I could work f o r my children, I could make everything f o r my children but now I c a n ’t. ” The subjects expressed this need many times: “M aybe they can help me to help m y se lf and wash myself, so that I can try to cook f o r m yself", and “The washing, I would like to do the w a sh in g . W ashing m y s e lf a n d the clothes. ” Socialisation M ost o f the subjects were not occu­ pied during the day. Few people cam e to visit, and only two subjects actually went to visit their neighbours. M ost of the subjects listened to the radio or watched TV. The gentlemen who was bed-bound, sits on his own all day (locked into the house for security reasons) and listens to talk shows on the radio. The bedridden old lady disliked radio and TV, and cried often out o f loneliness. Although she had family around, it appears that she wanted someone o f her own age to talk to. The daughters are now considering placing her in an old age home. Only one subject was able to work again - he had his own business, but it involved lifting objects, which he found difficult. However, none of the subjects were actually living alone. Financial concerns A recurring theme was the financial problems that all the subjects had. Many were pensioners, and the interviews took place at a time when the South African governm ent was im plem enting a policy of checking the legitimacy o f all pension claims. This resulted in a backlog of payments, adding to the already strained resources o f the subjects. Some o f the subjects had been the sole source of family income prior to their stroke and now found them selves and their families in dire straits. Only one o f the subjects had had a medical aid scheme but it had subsequently dried up. The lack o f finances resulted in trans­ port difficulties, as most o f them had to catch mini-bus taxis. As they were often unable to walk to a taxi rank, the taxi had to fetch them at home, adding to the cost. In addition, there has been the com plaint from a few sources that taxi drivers charge more for disabled people SA J o u r n a l o f P h y sio th e ra p y 1999 V o l 55 No 2 15 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 3. ) as they are slow to get on and off, and their walking aids or w heelchairs take up too much room. Two subjects were anxious to return to work: “A bout work. The others go to work and I stay by the home, that w or­ ries m e .” and “What worries me about my stroke is that I h a v e n ’t got so much p o w er to work because I am still not quite right" Motivation Many o f the subjects were religious, and put a lot of faith in the powers o f prayer: Question: “so how d id you get so much b etter? ” Answer: “Ip r a y e d my Lord. I d id pra y hard. ” Som e showed great determ ination to get better: “I am struggling to do it, I am trying, I fo rce it. I always fig h t with my fam ily, let me do something , not ju s t sit. ” A nd ... “M y se lf / was fig h tin g very h a r d .... Yes, you know because once you have g ot the stroke you d o n ’t want to do som ething painful, punish y o u rse lf and when you have g ot stroke moving is p a inful but i f you leave it, it ju s t stays, you have to fo rce that pain to go, you m ust fo rc e it like this, you m ust fo rce it yourself, the m uscles are getting weak because the muscles are stiff, i f you leave like that then you will have to go with the wheelchair, but i f you want to live, then you m ust fo rc e it. ” Unfortunately, the discussion did not go deeply enough to extract any cultural beliefs on the subject o f stroke. DISCUSSION With the information em erging from this study, the conceptual framework, drawn up prior to the study, was then revised, and is displayed in Figure 2. From the revised conceptual fram e­ work, it becom es evident that m any o f the items the author felt may have a nega­ tive im pact on the patient’s life, actually had a positive impact. For example, the patients were not alone, they lived with family; the extended family often provid­ ing tremendous support. This may negate the lack o f socialisation w ith friends. T he high rate of unem ploym ent in this area probably means that there are more adults around to support and give com ­ pany during the day. The concept o f an extended family may w ork in stroke vic­ tim s’ favour, as Spencer wrote (1993): “It is our expectation that persons with an interdependent way o f life prior to on­ set o f disability may adapt more readily because they are accustom ed to giving and receiv in g a ssistan ce and doing things cooperatively and thus expect this as a natural way in which things are done in their local w orld.” A lthough the interviewing author felt empathy for the subject’s apparent lack o f socialisation, this was not expressed by the subjects themselves. The bed-bound gentlem an who spent most o f the day, and possibly the night, alone, expressed a desire to walk again and not to socia­ lise more. The extended family o f these subjects may, perhaps, play a far more positive role in socialisation o f the sub­ ject than does the isolated fam ily units in Western cultures. Rather than becoming demotivated, the patients appeared to have a high level o f motivation, with religion playing an im portant role in this regard. It seems that the factor most worrying the subjects after a stroke is not the inabi­ lity to walk, but the need to be able to walk safely without fear o f falling. The early recovery o f walking has been noted in the literature (Wade et al, 1987; Jorgen­ sen et al, 1995; Hale and Eales, 1998b), however, these studies have been quan­ titative, and thus the fear o f falling has not been highlighted. This fear persists in spite o f most o f the subjects having sticks with which to walk. In this sample group, knee pain after walking was not com m on, but som e o f the subjects felt it was a problem. Having observed many o f them walking with abnormal gait pat­ terns, it is questionable w hether pain free am bulation will persist. However, the subjects did not actually have to walk far, their properties being small, and none of them expressed the desire to walk further out o f the property, say to visit friends. It is difficult to decide whether the fear o f falling prevents further excursions, or the lack o f desire does so. Interestingly enough, many subjects had return o f upper limb function, and only some expressed the wish for it be im proved. H ow ever, there was a high incidence o f pain in the shoulder. The other secondary com plications o f stroke did not seem significant, except for the stiffness which most likely w ould deve­ lop into contractures at a later stage. FIGURE 2: REVISED CONCEPTUAL FRAMEWORK MEDICAL PROBLEMS Impairment Disability Handicap Understanding pain in shoulder slight pain in knee stiffness independent ADL independent gait w ash in g and dressing most desired • afraid of being alone • afraid of falling • perceived uselessness (to help in home) • yet very motivated poor understanding non-compliance due to socio­ economic reasons PSYCHOSOCIAL PROBLEMS Home Environment Socialisation Economic outside toilet no running water inside the home do not live alone caregivers present no friends visiting not go in g out of the home nothing to d o all d ay very poor financial situation no money for transport money for food not mentioned unable to w ork 16 SA J o u r n a l o f P h y sio th e ra p y 1999 V o l 55 No 2 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 3. ) M ost o f the patients were mobile and independent in ADL. They did get out o f bed and get to the toilet. The functional task most desired appears to be the task o f w ashing oneself. Only three houses had proper bathroom s w ith running water. M ost o f the subjects would have to fetch w ater from the kitchen tap, heat it up and use it to wash in a tub. However, it was not so much the lack of independence in activities o f daily living but the loss o f usefulness, o f worth, within the family unit which the sub­ jects found so distressing. They would like to have some meaningful role, to be allow ed this role, in the home, for exam ­ ple, to do some cooking or wash the clothes. Education would appear to be the main form o f intervention required. Although the subjects and their fam ilies were mostly aware o f what a stroke is, there appeared to be a lack of insight into w hat causes stroke. T here was little understanding o f the risk factors. The subjects were aware, in general, o f their medication. Non-com pliance appeared to be due to a lack o f financial resources to get to clinics. T hese facts have been highlighted in a previous studies (Hale et al, April 1998; Stewart et al, 1999). Som e o f the subject’s com plained o f short-term mem ory loss, which would have to be taken into account when plan­ ning education strategies. CONCLUSION Although there was a possible lack o f depth to the interviews, and much infor­ mation may not have been elicited, the study was still revealing. It highlighted m any areas o f concern that would need to be addressed in a rehabilitation pro­ gram. Education is extrem ely important. The stroke patient, and for that matter, the general public, need to be enlightened about stroke: what it is, it’s risk factors and it’s prevention. In addition, the patients and their families need to be taught on how to prevent the secondary com plications o f stroke, especially with regards to pain and contractures, as well as being taught on what they can and should not do. For exam ple, the family must encourage the patient to be able to fulfil a role in the home, and not be dis­ couraged from working in the home. Relearning o f independence in ADL, especially in dressing and w ashing would help trem endously to improve the patient’s self-esteem. A ssisting a patient to walk safely is a priority. Unfortunately, the financial burdens o f the patient and their fam ilies can not really be addressed by the physiothera­ pist, apart from appropriate referral. Rehabilitation has to take place in the context o f the patient’s life - his home and his financial state - wishing for more is unrealistic. However, there is a very valuable attribute that be can harnessed in the rehabilitation o f people like those interviewed in this study, and that is their m otivation, and in many cases, their deep religious faith. One subject felt very strongly about the need never to give up: “They m ust fig h t with some exercise, and they m ust never, never relax. They must not think that when they go to the hospital f o r the stroke that they are going to give a spe­ cial medicine f o r the stroke, very much the special medicine f o r the stroke is exercise, exercise, th a t’s a ll'’. A nother subject, an old lady, was moved to say, in spite o f her own dis­ abilities: “You know when I got there (Zola Clinic), I said, please God help me. I was crying very hard, the other people are so worse than m y se lf they c a n ’t even wave their hands. I fe e l so sorry f o r them. ” ACKNOWLEDGEMENTS The authors would like to thank the subjects, the two participating physio­ therapy students and the interpreter for their help in making the study possible, and to Professor K Shepard, Temple U niversity, P h iladelphia, for all her guidance. This study was granted ethical clear­ ance from the Com m ittee for Research on Human Subjects, University of the W itw atersran d : N o. 9 5 0 111. 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