Pa r e n t a l E x pe r ie n c e s o f a C e r e b r a l Pa l s y C linic in a P o o r U r b a n iz in g C o m m u n it y A B S T R A C T : Fifty-five paren ts o f children with cerebral p a ls y (CP) attending the C P C linic a t B aragw anath H ospital were random ly selec ted an d interview ed. An open-ended, sem i-structured verbal questionnaire w as used to determ ine the paren ts' understanding o f their child's diagnosis, their hopes and expectations and their im pressions o f the therapy service offered by the clinic. A ll paren ts attending the clinic f o r the f ir s t time were excluded. R esults sh ow ed that although an explanation o f the diagnosis had been given to 54 o f the participan ts, only 40% gave a m edical explanation f o r their child's problem s. In a ll cases this explanation w as b r ie f and incom ­ p le te . M ost p a ren ts (87% ) were still hoping f o r a norm al outcome. S eventy-three p ercen t o f paren ts w an ted their children to "be like other children" and 18% saw walking as a sh o rt­ term goal. E conom ic independence and the ability to fu lfil a p a ren ta l role w ere the m ost common long-term goals. E ighty-four p ercen t sta ted they w o u ld continue to attend the clinic even i f the therapy w as not helping their children. H om e visits w ere thought to be a g o o d idea by the m ajority (82% ) o f parents. The study dem on strated that paren ts' understanding o f C P w as vague, and their hopes f o r their children's fu ture unrealistic. A s the m ajority o f children attending the clinic were still young, the paren ts' hopes f o r a norm al ch ild m ay not be that unrealistic. P aren ts w ere generally satisfied with the service p ro v id e d but this m ay reflect their disem pow erm ent. The n eed f o r a ppropriate edu­ cation o f pa ren ts regarding diagnosis, outcom e and services ava ila b le is highlighted, a s are the needs f o r esta b lish ­ ing m utual go a ls in therapy, and em pow ering parents. KEYW O RD S: PERCEPTIONS, EXPECTATIONS, H O M E MANAGEMENT, THERAPY, CEREBRAL PALSY GILLIAN ANDERSON BSc (Physio) MSc(Med) (Wits) ANDRE VENTER MBBCh (Pret, MMed (Paed) (Wits), PhD (UofA, Can), DCh (SA), FCP (Paed) (SA) Professor and Chief Paediatrician, Department of Paediatrics and Child Health, Faculty of Health Sciences, University of the Free State, Bloemfontein T he im pact o f a child w ith a disabil­ ity on a fam ily is com plex and cannot easily be described o r p re­ d ic te d 1. F or health and therapeutic ser­ vices to m axim ally satisfy the needs o f these fam ilies, it is necessary to establish w hat their needs and expectations are. T here is evidence that the needs o f p ar­ ents w ith disabled children differ from those perceived by professional health w orkers.23 S tudies done in A m erica and the U nited K ingdom highlight the im por­ tance o f individualized service and treat­ m ent plans tailored to varying fam ily strengths and needs.4,5 Services w hich focus on the c h ild ’s disability often may not address other problem s in the family. In som e cases, the services them selves m ay produce extra dem ands on the fam i­ ly by expecting parents to concentrate on the child w ith the disability to the ex clu ­ sion o f other p ro b lem s.2 L im ited resources in developing co u n ­ tries results in fam ilies o f children w ith a d isab ility often receiv in g little or no assistance w ith the care, education and training o f th eir disabled child.6 The W H O estim ates th at in developing co u n ­ tries, existing services are m eeting no m ore than tw o percent o f those in need.7 In South A frica, less than h alf o f people w ith a disability receive rehabilitation and only five percent receive pro fessio n ­ al help at hom e to enable them to cope better w ith the disability.8 B aragw anath H ospital is a state-run hospital w hich serves Sow eto, a p red o m ­ inantly poor, urbanising, b lack co m m u n i­ ty w ith an estim ated population o f over tw o m illion people. T he C erebral Palsy (CP) Clinic at the hospital is the only ou t­ patient facility offering therapy to ch il­ d ren w ith C P living in Sow eto and the surrounding areas. D uring the past 5 years, approxim ately 2 00 0 children w ith C P have been referred fo r therapy. M ost children attend the clinic m onthly and the m ain form o f therapy offered is a hom e m anagem ent program m e w hich is based on neuro developm ental therapy p rin ci­ ples. T hus the ro le o f parents in caring fo r their children at hom e is vital. T he aim o f the hom e program m e is to facili­ tate easier m anagem ent o f the child in his ow n environm ent in a w ay w hich b en e­ fits the child w ithout increasing the bur­ den o f care. D yer3 show ed that there is a difference in the view o f parents and therapists o f the difficulties experienced in caring for a child w ith CP. T herapists consistently underestim ated the problem s perceived by p a re n ts and o v era ll ag re em e n t betw een therapists and parents w as only 38% . T he findings indicated that for p ar­ ent p articipation to im prove, therapists needed to alter their p ractise so as to be m ore aw are o f the p are n ts’ view s and concerns in relation to the care o f their child w ith CP. A lth o u g h p are n tal in v o lv e m e n t has been a m ajor developm ent in the field o f disability, there has been relatively little system atic in vestigation o f the value o f parental involvem ent from the p a re n ts’ point o f view,5 especially from a cross cultural perspective and w orking in a d is­ advantaged and deprived environm ent. H arry9 exam ined the role o f culture in Puerto R ican p a re n ts’ interpretations o f th e ir c h ild re n ’s p la c e m e n t in sp ecial sch o o ls. P aren ts sh o w ed c o n flic tin g interpretations o f the co n cep t o f d isab ili­ ty and offered alternative explanations for their ch ild ren ’s learning difficulties. T he study dem onstrated that co n seq u en t­ ly, the p o w er and the potential o f parents as effective collaborators in the ed u ca­ tion process w as seriously underm ined. L y n ch an d S te in 10 p o in t o u t th a t in 4 SA J o u r n a l o f Ph y s io t h e r a p y 1997 V o l 53 No 3 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 I PARENTAL HOPES FOR THEIR CHILD HOPE EXPRESSED NUMBER % Hope that my child will become normal 4 8 8 7 Do not think that my child will be normal 6 11 N o hope at all 1 2 Total 55 100 disadvantaged groups, the process o f ser­ vice provision itself m ay be in direct c o n ­ flict w ith the fam ily ’s cultural values and beliefs. W hen w orking w ith fam ilies of children w ith disabilities, the p a re n ts’ contribution to defining the problem is o ften d isreg a rd ed . P ro fe ssio n a ls are regarded as having both the expertise and authority to identify both the problem s and the solutions." C onflict m ay arise betw een disadvantaged m inority groups o f parents w ho are seeking the authority to determ ine the services their children need, and the professionals w ho define their ow n roles as experts. In d isad v an ­ taged and disenfranchised com m unities the unequal d istrib u tio n o f p o w er is ex acerb ated .12 In such a relationship the p are n ts’ o f the child w ith a disability are further disem pow ered. T he present service offered at the CP C linic is based on a traditional w estern m ultidisciplinary m odel despite it serv­ ing a d eveloping and disadvantaged c o m ­ munity. T he therapists at the clinic are fully aw are o f the divergent cultures and b elief system s o f their patients and m ake every effort to explain the ch ild ’s condi­ tion to the parents in a culturally accep t­ able m anner, bu t still using w estern m ed­ ical concepts. T his approach has been assum ed to be appropriate but no w ork has previously been done to establish the p are n ts’ p erception o f their ch ild ’s dis­ ability, their expectations for their ch il­ dren, their need fo r help and w hy they w ere u sin g th e serv ice. T h is stu d y endeavoured to provide answ ers to these questions. METHOD A ll parents or caregivers o f children w here a diagnosis o f C P had been co n ­ firm ed by clinical exam ination and w ho had attended the C P Clinic at least once previously were selected over a random three w eek period. A nonym ity and co n fi­ dentiality w ere guaranteed and consent w as obtained fro m participants before the q u e s tio n n a ire w as ad m in istered . A n open-ended, sem i-structured verbal q u es­ tionnaire w as used asking the follow ing questions: 1. Has anybody explained to you w hat the problem w ith y o u r child is? If so, who? 2. W hat do you think is w rong w ith your child? 3. W hat are y o u r hopes for y o u r child? 4. D o you think your child w ill achieve this? 5. W hat do you think the CP Clinic can do for i. you? ii. y o u r child - in the short term ? iii. in the long term ? 6. D o you talk to o th er m others w hen you are w aiting for therapy? 7. D oes this help you to m anage your child? 8. D o you think it is im portant to com e to the C P Clinic for therapy? W hy? 9. If you th ought that therapy w as not helping, w ould you still com e? 10. H ow often w ould you like to attend therapy at the C P Clinic? 11. D o you think it w ould help you if som eone from the CP C linic cam e to visit you and your child at hom e? W hy? 12. D o you think there is anything else at the C P C linic w hich w e can do to help you and your child? T he questions focused on the p are n ts’ understanding o f th eir c h ild ’s diagnosis, th e ir short and lo n g -term h o p es and e x p e ctatio n s fo r th e ch ild , and th eir im pressions o f the service and therapy offered at the CP Clinic. T he interview w as conducted in one o f the local lan­ guages (eg. Sotho, Zulu) by an im partial non-m edical research assistant w ho had no particular know ledge o f the ch ild ’s condition. A ll the answ ers w ere recorded verbatim in E nglish by the interview er. T hese answ ers w ere then categorised by the prim ary researcher, w ho w as blind to the ch ild ’s diagnosis and the identity o f the parents. Statistical analysis w as m ade using Statpac. RESULTS F ifty-five interview s w ere conducted w ith the m ajority (84% ) being w ith the ch ild ’s m other. In only one case w as an u nrelated careg iv er interview ed. M ost (55% ) o f the children cam e from the g reater Sow eto area, w hile 43% travelled from an area fu rth er than 50 k m from the hospital. T h e vast m ajority (98% ) o f ch il­ dren w ere u n d er fiv e years o f age with o ver h alf being under the age o f three years. A ttendance at the clinic varied from less than a y ear to tw o years or longer. M ost o f the children (83% ) had attended the clinic for therapy on m ore than three occasions. PARENTAL PERCEPTIONS, HOPES AND EXPECTATIONS F ifty-four (of the 55) p articipants in d i­ cated th at p rio r to this interview , a health w orker had given them an explanation o f their ch ild ’s condition. In 82% o f cases, this w as the do cto r and in 18% o f cases, it w as other clinic staff (a registered nurse o r a therapist). W h en asked to d escribe their ch ild ’s problem , m o st p ar­ ents (56% ) explained it in term s o f a functional disability - th at the ch ild ’s m ain problem w as that he o r she could not w alk, talk o r sit. O nly 40% o f the p ar­ ents could advance a m edical explanation for their ch ild ’s problem s, eg. the child d id no t g et en o u g h o x y g en at birth (asphyxia), o r that he o r she had had m eningitis, or sim ply th at “the brain was d am ag ed ”. In all cases, p are n ts’ ex p lan a­ tions w ere b rief and incom plete w ith no understanding o f the link betw een the d isability and its underlying pathology. T his em phasises the fact that functional m ilestones such as sitting or w alking are forem ost in the m inds o f parents. M ost (n=48) o f the parents interview ed expressed the hope that their children w ould eventually be norm al, six parents did not think that th eir child w ould be norm al and one parent had no hope at all (Table 1). O n further questioning, 60% of this group o f parents believed th at this w as possible, 36% w ere unsure but ho p e­ ful, w hilst 4% refuted the possibility o f th eir child ever being norm al. P a r e n ts ’ m o st im p o rta n t sh o rt-term goal for their child w as to see the child being able to do “the basic things o f life - like oth er ch ild ren ” . E ighteen percent SA J o u r n a l o f P hysiotherapy 1997 V o l 53 No 2 5 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 II PARENTAL EXPECTATIONS FOR THEIR CHILD SHORT-TERM NUMBER % B e c o m e lik e o th e r c h ild r e n 4 0 7 3 L e a rn to w a lk 1 0 1 8 A tte n d s c h o o l 1 2 U n s u re 1 2 O t h e r 3 5 Total 55 100 LONG-TERM E c o n o m ic in d e p e n d e n c e 2 2 4 0 H a v e a fa m ily 9 1 6 A tte n d s c h o o l 8 1 5 G o o d q u a lit y o f life 8 1 5 B e c o m e n o r m a l 3 5 O t h e r 4 9 Total 55 100 TABLE III REASONS FOR W ANTING HOME VISITS NUMBER % M e a n s th a t c h ild g e ts m o r e t h e r a p y 1 7 3 8 C o r r e c t a n d a d v is e h o m e p r o g r a m m e 11 2 4 C h ild is m o r e " fr e e " a t h o m e 8 1 8 N o m o n e y f o r tr a n s p o r t to c o m e to C P C lin ic 6 1 3 W ill e n c o u ra g e th e m o th e r 3 7 Total 45 100 saw w alking as an im portant short-term goal w hile econom ic independence and the ability to fulfil his or her role as a p ar­ ent w ere the tw o m ost com m on long­ term goals m entioned (Table II). W hen asked about w hat they thought the clinic could do for them personally, 91% said they expected the clinic to assist them to help their children w hilst seven percent felt that the clinic could do nothing for them as parents. A ll o f the parents agreed that it was im portant for them to com e to the clinic. T w o -th ird s o f p a re n ts h ad n o tic e d im p ro v em en t in th eir children. O f note w as that 84% stated that even if they th ought th at therapy w as no t helping th eir children, they w ould continue to attend th e clinic. R easons given w ere that the clinic w as perceived to be the o nly place w here they could receive help fo r th eir child (22% ); that it w ould take a long tim e to see p rogress in th eir child and therefore it w as im portant to co n tin ­ ue attending; that they need ed the sup­ port o f other m others they m et at the clinic, or th at they believed that their child w ould deteriorate if they stopped therapy. A lm o st all th e p aren ts in terv iew ed (96% ) talked to other parents w hilst w ait­ ing fo r therapy w ith 78% indicating they fo u n d this b en e ficia l as they gained advice, help, hope and encouragem ent from other m others. H ow ever, 16% stat­ ed they did not find talking to other m others helpful, as not all m others w ere w illing to discuss their children. Som e parents also experienced com m unication d ifficu lties ow ing to language d iffe r­ ences. W hen asked if they thought that hom e visits by therapists w ould be useful 45 m others agreed. T he reasons given were that this w ould m ean that their children w ould get therapy m ore often (38% ), the therapist w ould evaluate the hom e en v i­ ronm ent and then m odify the program m e (24% ), the child w ould be m ore free at hom e (18% ), there was no m oney for transport to com e to the clinic (13% ) and it w ould encourage the m other (7%). DISCUSSION T he study was useful in clarifying parental perceptions and understanding o f their ch ild ren s’ problem s. It was clear that parents did n o t fully understand the underlying causes for their c h ild ren ’s d is­ ab ilities ev en tho u g h they h ad been offered an explanation. T he u nderstand­ ing o f the relationship betw een brain injury and the consequent physical p ro b ­ lem s and loss o f function was vague. It is possible that the ex p la­ nations parents w ere given w ere too brief, too detailed, or inappro­ priate. A ll the parents w ho p artici­ pated in the study had attended the C linic for therapy m ore than once and therapists assum ed that they u nderstood w hat a diagnosis o f CP m eant. H ow ever, it appears that a p rio r k n o w led g e o f the c h ild ’s diagnosis should n o t be taken for granted. A g reater em phasis needs to be placed on providing parents w ith an explanation w hich they can understand. Yet, on the other hand, it has been well docum ented that a p are n ts’ em otional responses to the new s o f th eir ch ild ’s d isab il­ ity m akes it difficult for them to grasp the im plications and co n se­ q u en c es o f th e ex p lan a tio n s o ffe re d .131415 F eelin g s o f shock, denial or anger m ay inhibit parents form absorbing the explanation or from asking questions. In th is study, n o altern ativ e e x p lan a tio n s (eg. b ew itch m e n t, genetics), fo r the c h ild ’s disability w ere su g g ested by the parents. A lthough this was surprising, it does no t im ply that parents had not sought help from traditional h eal­ ers. As the children w ere receiving therapy in a hospital environm ent, it is possible that parents felt co n ­ strained about discussing alterna­ tiv e trea tm e n ts o r trad itio n al beliefs. It w ould be useful if future questionnaires included questions on these subjects. T h e p a re n ts ’ e x p e ctatio n and hope for a norm al child was a dom inant and n o t unexpected fea­ ture. T h ese ex p e c ta tio n s w ere unrealistic considering that their children w ere severely disabled and m any had been attending the CP C linic for over a year. At p re­ sent, the m ain service offered at the clin­ ic is therapy. As therapy focuses on facil­ itating the ch ild ’s ability to do things for him self, the parent m ay feel encouraged and thus therapy itself m ay contribute to the p are n ts’ unrealistic hopes and high expectations. A lter-natively, as it has ju st been show n that the parents do n o t have a clear understanding o f the diagnosis, it is not surprising that their prognosis is unrealistic. H igh parental hopes fo r a n orm al child are no t uncom m on in any society.13 T he p red o m in a n c e o f in fan ts and young children (only 25% w ere over the age o f tw o years) m ay also shed som e light on the high parental expectations. It supports the im p ressio n o f therapists w orking at the C P Clinic that initially parents w ill bring their children regular­ ly, but as tim e passes and the child is still not “cu red ” , o r seem s to have reached a plateau and progress is no lo n g er obvi­ ous, the parents lose hope and stop co m ­ ing. This assum ption is confirm ed by the finding that parents are unclear about their ch ild ’s diagnosis and prognosis and that explanations given to parents appear 6 SA J o u r n a l o f Ph y sio t h e r a p y 1997 V o l 53 No 3 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. ) to have been unsatisfactory. It w ould be interesting and valuable to establish w hat the hopes and expectations o f parents are who have term inated therapy. T he results indicate that in general, parents were satisfied with the service they w ere receiving. It is surprising that 84% o f parents said th at they w ould still attend the clinic even if they thought that the therapy was not beneficial. This indi­ cates the im portant subsidiary role the clinic plays in providing em otional help and support to parents and that therapy is only one com ponent o f w hat the clinic potentially offers to m others. It also h ig h ­ lights the paucity o f com m unity-based services offering appropriate support and counselling to fam ilies o f children with CP. T he availability o f these resources could significantly im pact on the care o f disabled children, w hile reducing the workload for the clinic staff. T h e n eed fo r m o re co m m u n ity involvem ent is fu rth er expressed by the p a r e n ts ’ d esire fo r h om e v isits. T he involvem ent o f parents in therapy p ro ­ gram m es at h o m e is a d v o c ated and en co u rag ed by m o st th e ra p is ts .161718 There are how ever, conflicting opinions about the potential benefits and d etri­ m ental effects w hich this m ay have on both the child and the fam ily.3 H om e visits are often criticized as being tim e- consum ing and expensive in term s o f staff utilisation and w ork production. H o w ev er, as a re s u lt o f th is study, hom e visits to children living in Sow eto h av e b een in tro d u c ed by the clin ic staff and this program m e is currently being evaluated. T h e study has a num ber o f lim itations w hich should be borne in m ind when interpreting the results. To ensure co n fi­ dentiality, trust and honestly, respondents w ere not identified. This m ade it im pos­ sible to correlate the nature and severity o f the ch ild ’s disability w ith the p are n ts’ u n d erstan d in g o f the d isab ility , th e ir hopes and their expectations. In addition, this study did not ev aluate the actual ser­ vice being provided. Parents m ay have been satisfied with suboptim al inform a­ tion and care because o f poor education, disem pow erm ent and low life expecta­ tions. As the interview was conducted in the local languages, som e inform ation m ay have been lost o r m odified during th e tran slatio n and re c o rd in g into E n g lish . T he fin d in g s co u ld also be biased by the use o f the clinic setting to conduct the interview s, and only inter­ view ing parents who used the service. CONCLUSION This study dem onstrates that at the CP Clinic at B aragw anath H ospital, p a re n ts’ know ledge o f th eir ch ild ren ’s disability and th eir hopes and expectations fo r their ch ild ren ’s future are often vague and unrealistic. T his was irrespective o f the length o f tim e they attended therapy and despite the fact th at the condition had been explained to them . A ppropriate ed u ­ cation o f parents bringing their children to the CP C linic is critical. N ot only do parents require continuous education and k now ledge about C P and the likely o u t­ com e for their children, but also inform a­ tion with regard to services and therapy offered, and w hat can be expected from the clinic. T he need fo r a partnership betw een therapists and p aren ts in establishing m utual needs and goals is im portant. E m pow ering children with a disability and their fam ilies is essential if they are to tak e ch a rg e o f th e ir ow n lives. E m pow erm ent creates opportunities for fam ilies to gain access to resources and to acquire the necessary know ledge and skills to cope b etter with the disability. This enables fam ilies to actively p artici­ pate in the decision-m aking process and evaluate the service provided to their children. The inform ation and insight gained from this study is already being utilized to change the service offered to parents who bring th eir children to the C P Clinic. A p art fro m in tro d u c in g h o m e visits, there is now m ore em phasis on support and self-help groups, and a review o f the ex p la n a tio n s p a re n ts are g iv e n w ith reg ard to th eir c h ild ’s d iag n o sis and prognosis has been made. F uture research w ill focus on those parents w ho have stopped attending the clinic. T h eir view s w ould probably more accurately reflect the long-term satisfac­ tion with, and perception o f services and identify possible disillusionm ent w ith the clinical outcom e. ACKNOWLEDGEMENT We w ish to thank Dr. H aroon S aloojee fo r reading the draft and fo r his valuable com m ents. REFERENCES 1. Erickson M and Upshur C. 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SA J o u r n a l o f Ph y s io t h e r a p y 1997 V o l 53 No 3 7 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. )