P a r e n t s ’ P e r c e p t i o n s T h e P e r c e p t io n s o f P a r e n t s a n d C a r e g i v e r s o n t h e C a u s e s o f D is a b il it ie s i n C h i l d r e n w it h C e r e b r a l Pa l s y : A Q u a l it a t iv e In v e s t ig a t io n A B S T R A C T : T h e p u r p o s e o f th is s tu d y w a s to in v e s tig a te th e p e r c e p tio n s o f p a r e n ts a n d c a r e g iv e r s o n th e c a u s e s o f d is a b ilitie s in c h ild re n w ith c e r e b r a l p a ls y in s e le c te d a re a s o f th e C a p e M e tr o p o lita n . A q u a lita tiv e r e se a rc h d e s ig n w a s c h o s e n f o r th e in v e s tig a tio n . D a ta c o lle c tio n w a s by s e m i-s tr u c tu r e d in te rv ie w s. T h e r e su lts s h o w e d th a t th e r a n g e o f v a r ia tio n in th e b e lie fs o f th e p a r e n ts a n d c a r e g iv e r s c o n c e r n in g th e c a u s e o f th e c h i l d ’s d is a b ility a n d th e s tig m a a tta c h e d w a s q u ite c o n sid e r a b le . H o w ever, th e m a jo r ity o f th e in fo r m a n ts h a r d ly k n e w th e c a u s e s o f d is a b ilitie s w h ile o n ly a f e w in fo r m a n ts s e e m e d to h a v e k n o w n . I t is r e c o m m e n d e d th a t h e a lth p r o fe s s io n a ls w h o w o r k w ith f a m i l i e s d ir e c tly c o u ld p la y a m a jo r ro le in p r e v e n tin g u n n e c e s s a r y s tr e s s fu l s itu a tio n s b y p r o v id in g a d e q u a te in fo r m a tio n a b o u t th e c h i l d ’s c o n d itio n in te r m s o f a e tio lo g y a n d th e lik e ly p r o g n o s is . H e lp in g a n d w o r k in g w ith s u c h f a m i l i e s re q u ire a m u ltid is c ip lin a r y e ffo rt, e ffe c tiv e c o m m u n ic a tio n a m o n g f a m i l i e s a n d p r o fe s s io n a ls , a n d k n o w le d g e o f c o m m u n ity reso u rces. K E Y W O R D S : C A R E G IV IN G , C E R E B R A L PALSY, D IS A B IL IT Y , N A T U R A L IS T IC , P E R S O N A L I S T I C MWESHI, MM, DIP. PT (Zambia), MSc. PT (UWC)’; MPOFU, R, MCSP, DIP TP, MSc Rehabilitation (UK), PhD (UWC)2 1 Francis Sisters, Luanshya, Zambia. Dean, Department of Physiotherapy, University of the Western Cape INTRODUCTION Cerebral palsy is one o f the com m on causes o f severe physical disabilities in children caused by irreversible brain lesio n s o ccu rrin g befo re, du rin g or shortly after birth. It affects the motor and often, other systems controlled by the brain. T he associated handicaps may include speech, language problem s, oral-dental problems, visual, cognitive and h earin g im pairm ents, and behavioural problem s (Pimm, 1996). The definition o f disability has been the subject o f m any debates resulting in the developm ent o f the International C lassification o f Im pairm ents, D isabi­ lities and H andicap (ICIDH) followed by the ICID H -2 which is now being field tested (W HO 1980, 1997). The general understanding is that a m ulti­ purpose classification must be designed CO RRESPO N D EN C E TO: M rs R. M pofu D epartm ent o f Physiotherapy, U niversity o f the W estern Cape, Private Bag X17, 7535 Bellville South Africa for use in different settings and to provide a common fram ework for under­ standing the dim ensions o f disablem ent and functioning at three different levels: the body, the person, and society. Studies have shown that in the health sector, diagnosis alone does not predict needs, length o f hospitalisation, level of care nor outcomes. However, when data on functioning are taken into account the predictive pow er and understanding o f needs and outcom es are increased. M edical an th ro p o lo g ists (Leavitt, 1992) have defined a m edical care system as the constellation o f beliefs, knowledge, practices, personnel, facilities and resources that together structure and pattern the way mem bers o f a socio­ cultural group obtain care and treatment o f illness. Others use the term com para­ tive ethno-m edicine as those beliefs and practices relating to disease which are products o f indigenous cultural develop­ ment and are not explicitly derived from the conceptual fram ew ork o f m odem m ed icin e (L eavitt, 1992). K leinm an (1980) has developed one process of m edical ethnography, through w hich local health care systems are analysed. The process analyses issues like, patterns o f beliefs about causes o f illnesses, deci­ sions about how to respond to specific episodes o f sickness and actions taken in order to effect a change em ployed by all those engaged in the clinical process. The analyses can be applied for a specific illness to address questions about five m ajor factors: aetiology, tim e and mode o f onset o f symptoms, patho-physiology, causes o f sickness and treatment. The answers to these questions can be formed by the patient, family and health profes­ sionals and can be used in response to a particular illness or condition. Reis (1992) points out that causality beliefs also determ ine the way lay and professional people explain, treat and handle disability, and consequently their explanatory models and illness beliefs. W ithin traditional medicine, the primary concern is why a disability has been caused and in m odern m edicine how a disability is caused. Scholars use various term s to d escribe etiological theory, for exam ple n aturalistic-personalistic theories (Foster & A nderson, 1978). In traditional com m unities a naturalistic cause o f disablem ent is explained in impersonal system ic terms. In personal- istic term s disablem ent is believed to be 2 8 SA J o u r n a l o f P h y s io th e ra p y 2001 V o l 57 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. ) caused by purposeful interventions o f a sensate agent who may be a supernatural being (such as a ghost, ancestor, or evil spirit), o r hum an being (a witch or sor­ cerer). The disabled person is seen as the victim, the object o f aggression or punishm ent directed specifically against him /her (Foster & Anderson, 1978). Reis (1992) heeds that causality belief is not a static thought system, but a dynamic pro­ cess that reflects the changes in society. PROBLEM STATEMENT H ealth professions m anaging children w ith disabilities tend to concentrate m ore on the physical limitations and medical problem s ignoring the many d iv erse factors affecting the fam ily members. Factors like cultural practices, beliefs and values, language, rearing, environm ent and socio-econom ic status o f a fam ily and com m unity are known to influence care given to an individual in the caregiving environment. There is a need to help the professionals to under­ stand and deal w ith the im pact o f disablem ent on the functioning o f the disabled child, the siblings, caregivers and parents in the caregiving environment. Thus the perceptions o f parents and caregivers on the causes o f disabilities in children with cerebral palsy need to be explored. AIM OF THE STUDY The aim o f the study was to investigate w hat fam ily m em bers perceived the causes o f cerebral palsy to be and what the presence o f a child with cerebral palsy meant in African and Coloured fam ilies in a selected area in South Africa so that a better understanding can be reach ed for b etter rehabilitatio n approaches to be implemented. SELECTION OF RESEARCH SETTING The researchers assum e that there are. sectors within the disabled community in South A frica which have experienced g re a te r discrim in atio n than others since South African society is still very d iscrim in ato ry (W hite P aper on an Integrated National D isability Strategy, 1997). Society still regards children with disabilities as incapable, ill and a burden on it. A ccording to the W hite Paper more than 80% o f black (Africans, Coloureds and Indians) children with disabilities are said to live in extrem e poverty. They lack education and live in environm ents which are not hospitable. The purpose o f this study was to investigate how parents and caregivers perceive causes o f disabilities in the African and Coloured com m unities of selected parts o f the Cape M etropolitan area. T he area covers the cities o f Cape Town and Tygerberg within which are a num ber o f black (African and Coloureds) townships. The Red Cross and T ygerberg Physiotherapy D epartm ents provide outreach program m es for chil­ dren with cerebral palsy in some of the tow nships such as G ugulethu, Khayelitsha, Langa, Cross Roads, and Nyanga for the Africans fam ilies and through B ishop L avis R ehabilitation Centre, M itchell’ P lain’s A gape School and Special Care Centre for the Coloured families. METHODOLOGY A p u rposive sam ple o f ten parents and careg iv ers o f d isabled children were recruited from physiotherapy out patients’ departm ents o f Tygerberg and Red C ross h o spitals. T he inclusion criteria for selecting parents/caregivers o f disabled children were: 1. a child with cerebral palsy within the age-range o f 1 -18 years had to be living at home with the parent/caregiver 2. mild to m oderately disabled clients who were capable o f perform ing all aspects o f personal care such as wash, dress, eat independently and self­ toilet, with some assistance or none at all; and those who were severely disabled were dependant on parents/ caregivers or wheelchair bound. After inform ed consent, they were interv iew ed w ith the help o f two research assistants who were fluent in the local languages and in English. Some interviews were held in the homes o f the disabled children with the family around and others in p h y siotherapy departments. The sem i-structured interviews were guided by the unique responses o f the individual participants. They were asked to share 1. what they knew about the cause o f disability in the child, 2. and parents were further asked to express if they felt responsible for the cause o f disability. For clarity the same issue was asked in v arious w ays and inton atio n o f voice and non-verbal com m unication was noted in order to confirm a true reflection o f feelings. A ssistants were instructed to use the local language in order to stress and clarify some o f the issues. The interviews were recorded on tape and notes were taken during the interview. T he interviews were translated into English. The presentation tried as much as p o ssib le to retain the nuances. O ccasionally the translations retained original words that would have been lost in the translation. D ata were clustered and com m on variables were established. C om p arativ e trends, ten d en cies and em phasis were noted and inform ation in each interview was sorted into the p red eterm in ed them es and the new themes generated from the data. RESULTS AND DISCUSSION The results and the discussion will be presented together in order to prevent repetition which often occurs in quali­ tative analysis. T ranscribed verbatim excerpts from interview data will be quoted in numbers A l to A 10 in order to protect the identity o f children and fam ilies involved. The sam ple consisted o f four m others, two fathers and three relatives. Their ages ranged between fifteen and seventy years. Five came from the African and four from the Coloured groupings. T heir children’s ages ranged from one to thirteen years. The accounts constructed from the interview s are presented in such a way that the exact languages o f the informants are pre­ served, although the order o f the com ­ ments are som etim es altered. The range o f variation in the beliefs of the parents/caregivers concerning the cause o f the child’s disability and the stigm a attached was quite considerable. The issue o f stigm a cam e out very clearly during interview s. Inform ants had their own way o f expressing the stigm a they undergo due to the presence o f a disab led child in the family. Typically, the inform ants interviewed SA J o u r n a l o f P h y s io th e ra p y 2001 V o l 57 No 2 29 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. ) would preface their rem arks with, “I d o n ’t know, but m aybe”, o r there was som e inconclusive evidence in that the inform ant m ight say, “I believe such and such, but my mother, husband or brother etc. thinks such and such.” There was also a range o f variation in the probable validity o f the responses given. Examples o f probable valid naturalistic causes o f disability included: prolonged and difficult labour; jaundice and inherited abnormality. E xam ples o f responses that were oriented tow ard naturalistic b elief sys­ tem s included the following: A2: It could have been jaundice ... the yellow s tu ff in yo u r body. It m ust have been due to an accident I was involved in when I was a t work during pregnancy. A7: The m other o f this child was very sick ... Everything g ot m ixed up. A8: The doctor told me that m y s is te r ’s child h a d m eningitis when she was born ... but I am not so sure because / was dealing w ith a very young doctor. I fe e l m y sister h a d a shock ... because when she was in h ospi­ tal, she heard that her husband had im pregnated another woman whom he wanted to marry. ’ A10: I alw ays have children f a s t ... because I ea t g o o d f o o d during pregnancy ... but this time ... I had no m oney because m y husband lost his jo b and we have seven other children with two other dependants. The baby took a long time to be born. In contrast to these beliefs were those in w hich the p aren t/careg iv er believed in a supernatural or personalis- tic cause for the ch ild ’s disability: A5: There is a special wind produced by witches ... Every night I hear this w ind and they take m y grandchild with them to fe tc h other children. Responding to the question, “W hy did they choose your grandchild and not other children in the area?” She said, It is because they are jealous o f my fa m ily and me ... They think that my daughter who is the m other o f the child is earning a lot o f money. Other people say it is the magic that made him like that, but I think G od gave him to me because He is testing my fa ith in Him. I am afraid o f this magic and as such, our child is alw ays in­ doors ... they might come to finish him. A 4 :1 am the fa th e r o f the child and I believe in no rm a l sickn ess with some addition o f evil. It was the work o f the devil ... When m y wife was about to deliver, m y aunt asked f o r some m oney and I explained to her that I had to take care o f my b a b y ’s shopping ... You know what she said? You can keep yo u r m oney but rem em ber we shall m eet in the graveyard. When the doctor told me that m y baby h a d cerebral palsy ... I quickly remembered that m y aunt cursed me. W h eth er the p aren ts/careg iv ers believed in a naturalistic or supernatural cause, there appeared to be a strong religious com ponent to the belief system o f many o f them: A 2 :1 am a strong b e liever in G od because He is the only one I can trust. A 3 : 1 p ra y to G od that m y child can some day be able to w alk ... He shall walk! A l : I believe that He (God) made him in his own likeness ju s t like any other person. A5: Well, m aybe He (Allah) knows that I can cope. I believe H e cannot give you w h a t you c a n ’t m a n a g e ... He alw ays knows how to measure problems. In contrast, a few people did not believe that G od o r A llah had any connection to their ch ild ’s problem s no m atter what they believed was the cause o f disability, A6: H e is love ... a n d therefore He cannot give me som ething bad ... It is the d e v il’s work. A7: He does n ot m ake anyone sick. Sickness is fro m the devil. A 8 : 1 d o n ’t believe He ever gives a person anything n ot appealing. I f som eone is sick . . . I t is ju s t natural. A 9: He made us in H is own image and therefore disability is n ot fro m Him because He is perfect and w hat H e m akes is perfect. O thers had a negative attitude towards the creator: A 4 :1 am a Christian but the last time I went to church was two years ago. I have nothing to do there ... I f God loved me, why d id He give me a c h ild w ho ca n n o t do anything know ing that m y wife cannot bear any child again? He is not fa i r ... Why me a n d not som ebody e ls e ? ’ A10: I d o n ’t want to hear that He loves me ... Look a t what He has done to m y life a n d ou r fa m ily in general. O ne o f the parents felt com pletely responsible for the disability o f the child as A3 said, I am responsible f o r the disability o f m y child. . ..m y doctor told me that I was going to have twins but the life o f the second was a t stake i f I d id n ’t undergo an operation. I did n ot w ant to loose them both and thus decided to have it done. When I delivered... I g ot a shock o f m y life. One o f m y babies was disfigured a n d could n ot cry... and the other one was already dea d ... that was it... so who is to blame. She also went on to explain how her husband had left her for another women in fear o f having another disabled child ... H e says there are no disabled people in his fa m ily and therefore it m ust have come fro m m y fam ily. T he findings o f this investigation concur with other studies which have shown that in most cases parents do not know exactly what the causes o f illness or d isab ility are. A study done by A bram s and Goodm an (1998) noted that professionals shield away from explicit use o f labels, but prefer to use other descriptors to describe children’s deficits and as such p aren ts are see-saw ed b etw een optim istic and p essim istic statem ents. O ther studies have shown that com m unicating bad news about children to parents who are unprepared for it is a com plex and harsh task. The news giver is likely to cherish incom ­ patible values: a desire to be candid and clear, and the wish to avoid hurting parents unduly (Adams, 1982). Similarly, the news receiver wants to receive both, that is to hear the truth, and yet likely to resist it (Lynch & Staloch, 1988). 3 0 SA J o u r n a l o f P h y s io th e ra p y 2001 V o l 57 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. ) From the variations in the responses given by respondents who were inter­ viewed concerning causes o f disabilities, one can tell that most o f the respondents had lim ited levels o f understanding o f the causes o f disability. A possible rea­ son why m ost parents/caregivers hardly knew the cause o f disability could have been due to the level o f education, because none o f the respondents had a sound education. The results o f the study showed that som e parents felt that they were com ­ pletely responsible for the disability o f their child, others felt some responsibi­ lity, and only one felt that they were not responsible for the disability o f their child. T hese results can be com pared with earlier studies which have shown that one o f the most frequently cited reactions com m only attributed to parents o f disabled children is that o f guilt (Leavitt, 1992; Pimm, 1996.) Lack o f adequate in fo rm atio n regarding the child’s disability, can be a m ajor source o f stress in m ost families. Therefore, it is relevant that causes o f disabilities are explained to parents o f disabled chil­ dren in order to reduce the possibilities o f stress. M uch has been w ritten about the role o f professionals in dealing with families who are stressed (Cherry, 1989). Although health professionals may not w ork with fam ilies directly in coping w ith som e o f their perceptions, they can play a m ajor role in preventing unneces­ sary stressful situations by providing adequate inform ation about the child’s condition in term s o f aetiology and the likely prognosis. Helping and working with such fam ilies requires a m ultidisci­ plinary effort. Effective com m unication among families, professionals and know­ ledge o f community resources will there­ fore, be crucial for the am elioration o f perceptions w hich may cause stress in fam ilies caring for children with cerebral palsy. REFERENCES A bram s, E. & G oodm an, J. (1998). D iagnosing d e v elo p m en tal p ro b lem s in children: Parents a nd pro fessio n als neg o tia te bad new s. Journal o f P a ediatric P sychology, 23 (2):, 87-98. A dam s, G .L. (1992). R eferral advise g iven by p h ysicians. M ental R eta rd atio n , 20: 16-20. Cherry, D. B. (1989). S tress co p in g in fam ilies w ith ill or disabled children: A pplication o f the m odel to paed iatric therapy. P h y siotherapy and O ccupational T h era p y P a ediatrics, 9 (2):, 11-32. F oster, G. M . & A nderson, B. G. (1978). : M edical A nthropology: E thnom edicine. A lfred K nopf, N ew York. K le in m a n , A. (1980). P a tie n ts and h ealers in the c o n te x t o f c ulture. U n iv e rsity o f C alifo rn ia Press: B erkley, C a lifo rn ia a nd L ondon. L eavitt, R. L. (1992). D isability and R e h ab ili­ ta tio n in ru ral Ja m a ic a : A n E th n o g ra p h ic study. A sso c ia ted U n iv e rsity Press, L ondon and Toronto. L ynch, E ., & S taloch, N . (1988). Parental p e rce p tio n s o f p h y sic ia n s’ c o m m u n ica tio n in the in form ation process. M e ntal R e tardation, 26: 77-81. P im m , P. L. (1 9 9 6 ).S om e o f the im p licatio n s o f c arin g fo r a ch ild o r a d u lt w ith c erebral palsy. B ritish jo u rn a l o f O ccupational T herapy, 59 (7): 335-340. R e is , R. (1 9 9 2 ). H e it Z ie k te s te m p e l in Sw aziland. A n th ro p o lo g o sc h e V erkenningen, 3: 27-43. W h ite P a p e r on an In te rg ra te d N a tio n a l D is a b ilitu y S tra te g y ( N o v e m b e r 1997). O ffice o f the D eputy P re sid e n t T. M . M beki, R e public o f S outh A frica. W H O (1980). Intern a tio n a l C lassific a tio n o f Im pairm ent, D isability and H andicap. G eneva. W H O (1997). T he Intern a tio n a l C lassific a tio n o f Im p airm en ts, A c tivities and P a rticipation: a m anual o f dim e n sio n s o f d isa b le m en t and fu nctioning, “b e ta -1 ” . G eneva B o o k R e v i e w PNF in Practice - An Illustrated Guide 2nd revised edition Springer-Verlag Susan S Adler, D om iniek Beckers, M ath B uck B ooks on PN F tend to be very tech­nical, but I was pleasantly surprised when review ing this book. It is easy to follow w ith plenty of illustrations to assist the reader in understanding the text. The authors have em phasised that it is a practical techniques book using visual aids rather than words to describe actions. I did find that it had little theory, and as suggested, further reading is nec­ essary in this area for postgraduates. Certainly this book is m ore than ade­ quate for undergraduates and for the generalist who wants to have a reference book handy. It has all the basics - princi­ ples, special techniques (not all - I felt timing for em phasis was not com pre­ hensively explained), upper and lower limb patterns, neck and trunk patterns and face patterns. It gives good alternate staring positions w ith both new and old terminology. I found that it not only incorporated both upper and lower limb patterns with m at w ork (alternate positions) and special techniques, but also listed all the m uscles used in a particular pattern. I find the presentation encouraging as generally students have difficulty in integrating different concepts. I was also pleased to see that precautions were specially m entioned in block form. I have a m ajor concern that this book lacks an index o f subject matter. I would how ever definitely recom m end this book to the undergraduate and the qualified generalist. Jessica Lund SA J o u r n a l o f P h y s io th e ra p y 2001 V o l 57 No 2 31 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. )