Compliance with home rehabilitation therapy by parents of children with disabilities in Jews and Bedouin in Israel

Transcription

1 Complince with home rehbilittion therpy by prents of children with disbilities in Jews nd Bedouin in Isrel Ahron Glil* MD, Zusmn Child Development Center; Sr Crmel PhD MPH, Deprtment of Sociology of Helth, Fculty of Helth Sciences, Ben-Gurion University of the Negev; Hsi Lubetzky, Zusmn Child Development Center; Stvi Vered, Deprtment of Sociology of Helth, Fculty of Helth Sciences, Ben-Gurion University of the Negev; Nurit Heimn, Zusmn Child Development Center, Sorok University Medicl Center, Beer Shev, Isrel. *Correspondence to first uthor t the Zusmn Child Development Center, Sorok University Medicl Center, P.O.B. 151, Beer Shev, Isrel. E-mil: glil@bgumil.bgu.c.il Among key points in mking progress nd succeeding with therpeutic progrmme for children with disbilities is prentl complince with the regime for their child. The purpose of this study ws to evlute fctors influencing complince with home therpy in the Jewish nd Bedouin popultions. Dt were collected by structured questionnires. A totl of 193 fmilies prticipted (84% response rte) with children who rnged in ge from 6 months to 6 yers (men ge t first visit to the centre ws 9.5 yers in Jews nd 16.1 yers in Bedouin). Complince ws significntly lower mong the Bedouin. Multivrite regression nlysis showed tht the strongest contributory fctor in lck of complince ws being Bedouin. The second fctor ws intensity of questioning destiny, indicting tht prents with these feelings my be less likely to comply with therpeutic regimes. Other fctors which were ssocited with complince were prents eduction nd socioeconomic sttus: lower levels on these dimensions corresponded with lower prentl complince. These results were illuminted by tril intervention progrmme for Bedouin fmilies which involved telephone contct, trnsltion fcilities, nd detiled explntions during visits to the centre. Intervention incresed the complince rte of the Bedouin ppointments with specilists to 76% (91 of 120 ppointments) thereby reching similr levels to those of the Jewish group. These preliminry results indicte tht the strong ssocition between noncomplince nd being Bedouin my be due to fctors of communiction, nd tht the Bedouin re receptive to therpeutic interventions when communicted in their own lnguge. The cre nd long-term therpy of children with developmentl disbilities nd specil needs hve been the concern of medicl nd rehbilittion stff for mny yers. Due to the length of therpy, sometimes for the ptient s entire life, nd the difficulties for the fmily in complying with it, ongoing suggestions hve been mde to help the fmily cope with nd improve the therpeutic regime. Therpy t home by prents or by professionls is the recommended option (Jessop nd Stein 1991, Lw nd King 1993). Involving prents in their child s therpy nd mking them ctive prtners seems to hsten chievement of intervention gols (Short et l. 1989). However, the involvement of prents in home therpy my hve disdvntges, such s possible interference in nd disruption of fmily life (Epstein nd Cluss 1982). Furthermore, if there is disppointment due to lck of improvement, it my interfere with intrfmily reltionships nd/or rpport between the fmily nd professionls (Moxley-Hegert nd Serbin 1983). Considering such potentil negtive effects on the one hnd, nd the incresing use of home therpy nd recent extensive investments mde in developing nd promoting home therpy progrmmes on the other, it is essentil to evlute prents complince nd to identify nd understnd the fctors which my influence it. It is generlly ccepted tht complince is one of the key elements in treting children with disbilities t their homes (Jessop nd Stein 1991, Lw nd King 1993). Complince is defined s behviour coinciding with clinicl prescription (Blum 1984). In the popultion of disbled children, prentl complince refers to the dherence of the child s prents to the rehbilittion tem s instructions on performing exercises ccurtely nd t the recommended frequency, s well s ccepting restrictions, nd keeping ppointments with medicl nd rehbilittion stff. Prents of children with disbilities re t very high risk for low levels of complince (Gjdosik nd Cmpbell 1991). In previous studies, the estimted rte of non-complince ws round 50% (Litt nd Cuskey 1980, Gjdosik 1991). Complince hs been shown to be lower when the therpeutic regime is longer. Under such conditions, prentl non-complince cn rech 94% (Myo 1981). The verge complince of short-term home progrmmes (3 to 4 weeks) ws found to rnge between 47 to 67%. Similr rtes of complince hve lso been seen in cses involving juvenile rheumtoid rthritis nd with child diet regimes, medictions, nd medicl ppointments (Dvis 1968, Becker et l. 1972, Becker nd Green 1975, Becker et l. 1977, Korch et l. 1978, Smith et l. 1979, Wynn nd Eckel 1986). Mny diverse fctors hve been reported s being relted to complince, mong them re personlity, mritl sttus, intrfmily reltionships, finncil sttus, religion, rce, nd the mother s ttitude towrds her child s illness nd towrd the medicl services. The reltion between socioeconomic sttus (SES) nd complince is inconclusive: some studies report no reltion between SES nd complince (Becker et l. 1972, Wynn nd Eckel 1986, Gjdosik nd Cmpbell 1991), while others report strong reltion between low SES nd non-complince (Alpert 1964, Kolobe 1983). Severl methods hve been used to ssess nd mesure complince in previous studies, including the disposble tretment items method (when disposble items re counted to determine dherence to the exercise regime), dily journl recording, prent interviews, nd professionl evlution (Myo 1978, Moxley-Hegert nd Serbin 1983, Gjdosik Developmentl Medicine & Child Neurology 2001, 43:

2 1991). Ech method hs its methodologicl problems nd limittions regrding its level of ccurcy. Lw nd King (1993) ssessed complince using five different mesures nd found tht prentl self-rtings of their complince with the home therpy progrmme ws the only significnt predictor of their child s improvement in hnd functioning. The purpose of this study ws two-fold: (1) to evlute complince concerning home therpy in two distinct Isreli popultions Jewish nd Bedouin Arb both serviced by the Zusmn Child Development Center; nd (2) to ssess the fctors tht explin complince in both popultion groups. Our belief is tht identifiction nd understnding of these fctors will help to improve complince nd enble better plnning for therpeutic regimes. Method POPULATION The Zusmn Child Development Center is locted t the Sorok University Medicl Center in Beer Shev, the cpitl city of the Negev region which comprises 60% of the geogrphicl re of Isrel. The centre hs the tsk of investigting, evluting, coordinting, instructing nd prepring the prents for therpy t home. The centre serves the children who re born yerly t the Sorok University Medicl Center. Sorok is the sole tertiry cre fcility for the entire Negev region, with ctchment popultion of more thn , including Bedouin. All children in the region ged up to 6 yers with developmentl disbilities re referred to the Zusmn Center. Also routinely referred to the centre re very-low-birthweight (VLBW) bbies, weighing less thn 1500 grms t birth who re t risk for developing neurologicl or developmentl problems. The Zusmn Center trets nd follows bout 750 children ech yer, of whom 15% re VLBW. The children re followed by medicl nd rehbilittion personnel. The medicl stff includes child development peditricins nd nurse, nd the rehbilittion stff includes physiotherpists, occuptionl therpists, speech therpists, psychologists, nd socil workers. Ech child is evluted on n individul bsis using the neurodevelopmentl pproch nd unique therpy progrmme, including individulized therpy sessions t the centre nd home exercises. In order to fcilitte prentl coping with their child s disbility, ll of the medicl consultnts, such s orthopedic surgeons, neurologists, neurosurgeons, nd geneticists, re ccessed through the centre, nd orthotic device services re provided s well. At the pproprite ge, children with neurologicl nd developmentl disbilities re directed into specil kindergrtens, nd combined individul follow-up nd group progrmmes re crried out within the eduction system. As stted before, the two min ethnic groups in the region re Jews (80%) nd Bedouin Arb (20%). The Bedouin popultion hs gone through significnt chnges in recent decdes including improvement in housing nd economic sttus. The Bedouin culture is distinct from Jewish culture with unique beliefs, customs, lifestyle, helth cre pproches, nd fmily structure (Meir 1983, 1984, 1987; Al-Krenwi 1994; Al-Krenwi et l. 1996). PARTICIPANTS Prents were enrolled in the study if their child with developmentl disbility fulfiled the following criteri: (1) child ged 6 months to 6 yers; (2) child who hd therpy regime ppointment t the centre t lest once month nd whose prents were given instructions for home therpy; (3) child who ws followed by the Zusmn Center for t lest 6 months. PROCEDURE A smll pilot study ws crried out with questionnire given to 20 prents whose children were dischrged from the Zusmn Center due to their ge. Comments from this pilot study contributed to the construction of the finl questionnire. The study ws pproved by the Helsinki Ethics Committee of the Sorok University Medicl Center. A lnguge pproprite (Hebrew or Arbic) multiquestion inventory ws introduced to the prents. This questionnire included sociodemogrphic vribles such s ge nd sex of the child, sex of the prticipnt, level of prticipnts eduction, nd number of children in the fmily, s well s structured questions bout: (1) prents complince with therpy, both t the Zusmn Center nd t home; (2) their child s disbility nd the resons for referrl to the centre; (3) beliefs bout the outcome of therpy; (4) their stisfction with the centre s services; (5) possible burdens plced on the fmily by cring for child with disbilities. A consent form explining the study ws given to the prents nd they were sked to respond to the questionnire nonymously. No member of the Zusmn Center ws involved in the dt collection procedure. The socioeconomic dt nd the disbility sttus for ech child were collected by one of the clinicl investigtors nd trnsferred for evlution to the stff in the Epidemiologicl Sociology Deprtment who were blinded to detils of the questionnire. The questionnire ws introduced to prents by reserch students who were not prt of the Zusmn Center nd who spoke fluent Hebrew nd Arbic. The questionnire ws trnslted from Hebrew to Arbic nd trnslted bck by nother person ccording to regulr procedures. Two of these reserch students were Bedouin who were fmilir with Bedouin trditions nd culture. Ech mother nd fther ws sked seprtely to complete the questionnire either t the Zusmn Center or t home. When prents hd problems in nswering the questionnire due to lnguge fluency or lck of reding skills, the questionnire ws introduced verblly by the reserch students who hd been trined to respond in stndrd wy to the prents questionnires. The questionnires were returned by mil or deposited by the prent into closed box. Prents who did not return their questionnires were reminded by telephone twice nd then if it hd still not been returned, stmped envelope ws sent in order to encourge response. No further ttempts were mde fter tht. Dt were collected from June through December A copy of the questionnire in Hebrew or Arbic is vilble upon request. VARIABLES Complince Complince ws mesured by two questions from the questionnire, nd one objective mesure: (1) Do you perform the suggested exercises with your child t home? There were two response ctegories: 1, no nd 2, yes. (2) Are the exercises tht you do t home similr to those done by the therpist during the therpy meeting? Answers 262 Developmentl Medicine & Child Neurology 2001, 43:

3 were given on 5-point scle from 1 (not t ll) to 5 (to gret extent). The objective mesure of complince ws tht of recording the keeping of ppointments mde with the centre s tem over period of 4 months. Disbility sttus nd medicl dignoses The child s disbility sttus nd medicl dignoses were determined by using the ICD 9 (World Helth Orgniztion 2000) nd divided into three ctegories of disbility: mild, moderte, nd severe (Tble I). Children were included in the mild group if their medicl dignosis did not predict significnt devition from norml development. In the moderte group were children for whom significnt developmentl dely ws predicted by their medicl dignosis. All the children in the severe group re completely dependent. Belief in outcome Beliefs nd emotions regrding the child were evluted by 18 items. Responses to ll were given on 4-point scle rnging from: 1, never; 2, rrely; 3, often; nd 4, lwys. Items included expressions of self-pity, thoughts of questioning destiny, nd hope regrding the child s future. Fctor nlysis with Vrimx rottion yielded three fctors. Three indices were creted on the bsis of these fctors s verge scores of the items. The index of self-pity included 8 items (e.g. I cry lot nd feel helpless bout this sitution, I feel tht trgedy hs hit our fmily, I m collpsing, this is the end of the world for me ; internl relibility ws high (lph=0.86). The index of hopefulness included 7 items such s I m sure tht my child will close the gps, His/her development is just slower, I know tht one dy we will hve mircle nd our child will be cured, I believe tht one dy my child will function s the other children (lph=0.77). Destiny cn be defined s predetermined course of events often held to be n irreversible power or gency (Merrim Webster 1997, p 314). The mesure of questioning destiny included the following three items: I wonder why god hs chosen me from ll people nd put this burden upon me, I sk myself why hs it hppened to me, I wonder, wht hs gone wrong tht it hppened especilly to my child (lph=0.77) To ssess belief in outcome, the prticipnts were sked whether they expected the therpy to improve their child s dily functioning. Responses were given on 5-point scle from 1 (not t ll) to 5 (to gret extent). Stisfction Stisfction with the centre s services ws evluted by the generl question: To wht extent re you stisfied with the therpy received in the centre?, with responses scled from 1 (not t ll) to 5 (very stisfied). Burdens (1) Economic implictions were ssessed by the question: Wht re the economic implictions of cring for the child? 1, none; 2, cuses some burden; 3, cuses hevy burden. (2) The negtive effect of cring for the child with disbilities on the fmily ws evluted by two questions: Does the therpy of the child negtively ffect cring for other fmily members? *UK usge. US usge: mentl retrdtion. nd Does the therpy of the child negtively ffect mritl reltions?. Answers to both questions were on 5-point scle from 1 (not t ll) to 5 (to gret extent). Response rte The response rte to the questionnire ws 84% (193 of 230). Among the non-responders, eight respondents refused, two were out of the country, nd 27 did not return the questionnires. Comprison between the non-responders nd the prticipnts showed tht significntly more non-responders were Bedouin, mle respondents, those who hd lrger number of children, nd those who reported tht the fther of the child works outside the home. No significnt differences were found between the two groups of prticipnts nd nonresponders in terms of prents ge, children s ge, prents eduction, or mothers employment sttus. STATISTICAL METHODS Group differences were ssessed by t-test nd χ 2 tests ccording to scle structure. Reltive contribution of different vribles to the explntion of complince ws exmined by logistic multiple regression nlysis. Only vribles tht correlted significntly with the dependent vrible of complince were included s independent vribles in this eqution. Results Sociodemogrphic vribles of prticipnts from both groups re comprtively presented in Tble II. It cn clerly be seen tht while there ws no difference between the two ethnic groups in terms of ge nd sex of the children with disbilities, the Bedouin children hve significntly more severe disbilities thn the Jewish children. Of the Jewish children 54% Tble I: Ctegories of disbility by medicl dignosis Mild disbility Moderte disbility Severe disbility Benign hypotoni Cerebrl plsy (CP): DQ <40 hemiplegi CP: qudriplegi Clumsiness diplegi Attention Deficit Lerning disbility: Cystic periventriculr Disorder mild to moderte leukomlci Filure to thrive Down syndrome Brin trophy Torticollis Strbismus Severe hering problem Very very low High myopi Severe vision birthweight problems (<1000 g) Erb s plsy Epilepsy Symptomtic infntile spsm Arrested hydrocephlus Hering loss Congenitl musculr dystrophy Mild hypoxic ischemic Duchenne musculr encephlopthy dystrophy Infntile myotonic dystrophy Myelomeningocele Prder Willi syndrome Rett syndrome Angelmn syndrome Autistic spectrum disorder Rehbilittion Progrms nd Prentl Complince Ahron Glil et l. 263

4 hve mild disbility s compred with only 21% of the Bedouin children while the Bedouin children with severe disbilities represent 54% s compred to only 30% of the Jewish children. The prents of both popultions differed significntly on ll sociodemogrphic chrcteristics considered in this study. Significntly more Jewish mles responded thn Bedouin mles. The Jewish popultion hd lso received significntly more eduction nd hd fewer children thn the Bedouin popultion, nd reported lower levels of negtive implictions for the economic sttus of their fmilies nd in cring for other fmily members. Differences in sociodemogrphic chrcteristics between study groups led us to compre them lso on the dependent nd independent vribles of the study. Results regrding Tble II: Ptient chrcteristics nd prent sociodemogrphic chrcteristics nd implictions of cring for child with disbilities Jews (n=110) Bedouin (n=83) p Ptient chrcteristics Age of ptient (mo), men (SD) 9.54 (15.69) 6.10 (10.53) ns b Sex of ptient (%), mles/femles 62.4/ /32.4 ns Ptient disbility sttus (%) Mild Moderte Severe <0.001 Prent chrcteristics Sex of respondent (%), mles/femles 39.4/ /81.1 <0.005 Fther s eduction (%) None or elementry school High school Tertiry <0.001 Mother s eduction (%) None or elementry school High school Tertiry <0.001 Nr of children (%) <0.001 Implictions of cring Negtive economic implictions of cring for the child None Minor Severe <0.001 Negtively ffects cring for other fmily members, men (SD) 1.55 (1.10) 2.29 (1.54) <0.003 b Negtively ffects mritl reltions, men (SD) 1.51 (1.14) 1.68 (1.27) ns b Bsed on χ 2 test; b Bsed on t-test. Significnce ws set t p>0.05. Tble III: Complince to recommended home therpy nd to number of ppointments kept Jews Bedouin p Prctise t home According to the suggested therpy (%) <0.001 Similr to the required exercises (%) Men (SD) 4.61 (0.68) 4.07 (1.07) <0.001 b Number of ppointments kept, nr (%) Child development peditricin 419/557 (75.2) 325/496 (65.5) <0.001 Rehbilittion tem 1307/1731 (75.5) 726/1044 (69.5) <0.001 Totl 1726/2288 (75.4) 1051/1540 (68.2) <0.001 Bsed on χ 2 test; b Bsed on t-test. Similrity to the required exercise ws grded from 1 (not t ll) to 5 (to gret extent). Significnce ws set t p< Developmentl Medicine & Child Neurology 2001, 43:

5 complince re presented in Tble III. Bedouin prticipnts were found to be much less complint thn Jewish prticipnts, both in prctising the suggested therpy nd in keeping ppointments t the centre. While bout 89% of the Jews responded tht they crry out the therpy with the child t home, only 22% of the Bedouin reported tht they did (p<0.001). To the question, To wht extent re the exercises tht you perform with the child t home similr to those tht the therpist performs in the Institute, 94% of the Jews responded tht they exercised with the child s required, s compred to 78% of the Bedouin. Complince mong Bedouin nd Jews in keeping ppointments t the Child Development Center with child development peditricins or with the rehbilittion tem (physiotherpy nd occuptionl therpy) ws checked during 4-month period: My to June 1998 nd November to December These months were chosen to represent both winter nd summer sesons, nd becuse during these months there re no lengthy holidys for either ethnic group. Similr significnt differences were found in keeping ppointments t the centre (p<0.001). A comprison between both popultions on the indices of beliefs nd feelings is presented in Tble IV. The differences between the two groups on ll mesures re sttisticlly significnt. The Bedouin expressed significntly more self-pity nd less positive belief of hopefulness thn the Jews They lso questioned destiny more thn Jews. Regrding stisfction with the centre s services, Jews were significntly more stisfied thn the Bedouin. Results of univrite nlyses on complince nd sociodemogrphic chrcteristics, implictions for the fmily, nd beliefs nd feelings re shown in Tbles V nd VI. It ws found tht complince ws not relted to the child s disbility sttus, Tble IV: Prentl beliefs nd feelings regrding child s impirment nd stisfction with services mong Jews nd Bedouin Jews Bedouin p Pity b, men (SD) 1.83 (0.71) 2.67 (0.84) <0.001 Questioning destiny b, men (SD) 1.77 (0.88) 2.14 (1.05) <0.05 Hopefulness c, men (SD) 3.11 (0.72) 2.71 (0.83) <0.001 Belief tht exercising will improve functioning c, men (SD) 4.65 (0.77) 4.10 (1.36) <0.01 Stisfction with services d, men (SD) 4.58 (0.74) 3.97 (1.30) <0.001 Bsed on t-test; b Higher scores indicte stronger negtive feelings; c Higher scores indicte stronger belief in improvement; d Higher scores indicte greter stisfction. Tble V: Comprison between complint nd non-complint groups on medicl nd sociodemogrphic chrcteristics of ptient nd fmily Medicl nd sociodemogrphic Complint Non-complint p chrcteristics of ptient nd fmily Jews (%) Bedouin (%) < b Ptient disbility sttus (%) Mild disbility ns b Moderte disbility Severe disbility Age of ptient (mo), men (SD) 7.9 (13.75) 8.2 (15.01) ns c Ptient s sex Mles Femles ns b Fther s eduction (%) Elementry school High school Tertiry < b Mother s eduction (%) Elementry school High school Tertiry < b Mother working outside the home (%) < b Fther working outside the home (%) ns b Nr of children, men (SD) 3.2 (2.31) 6.2 (4.09) <0.001 c Age of fther (y), men (SD) 36.2 (6.17) 37.9 (9.60) ns c Age of mother (y), men (SD) 33.6 (8.09) 33.6 (5.61) ns c Complince with recommended home therpy regime; b Bsed on χ 2 test or t-test; c Bsed on t-test. Rehbilittion Progrms nd Prentl Complince Ahron Glil et l. 265

6 sex, or ge t the time the child ws referred, whether the fther works outside the home, the ge of either prent, nor to ny negtive effects on mritl reltions. However, the vribles of being Bedouin, low levels of eduction of both prents, the mother working outside the home, hving mny children, nd feeling burden of cring for the child (economiclly or in cring for other fmily members) were relted to less complince. In ddition, hving stronger feelings of self-pity, questioning destiny, less hope, weker belief in the effect of the therpy, nd lower level of stisfction with the centre s services were relted to non-complince. A multivrite stepwise logistic regression nlysis ws conducted on the first vrible of complince (negtive or positive) including ll vribles which were found to be significntly relted to complince in the univrite nlysis s independent vribles. Results showed only two sttisticlly significnt predictors. The first nd strongest contributory vrible to complince ws being Jewish or Bedouin. The second sttisticlly significnt vrible ws the intensity of questioning destiny, suggesting tht people who re more intensely disturbed by such feelings re less complint in performing the suggested exercises with their child. Discussion The most importnt fctor contributing to improvement in long-term cre nd rehbilittion therpy of children with disbility is prentl complince, tht is, dherence to the recommended therpeutic regimes. Due to the vst geogrphicl re of our centre s ctchment region, trnsporttion problems, nd limittions of the centre s resources, the policy of our centre is to encourge prents to provide exercise nd therpy t home, limiting their visits to the centre, while continuously monitoring the child, re-evluting, recommending therpeutic exercises, nd ressuring the prents. Complince ws mesured by prentl report on home therpy nd by keeping ppointments t the centre. Significnt differences were found between the Jewish nd the Bedouin groups: complince being lower in the Bedouin group. As the second strongest contributory vrible to non-complince ws the intensity of questioning destiny, this suggests tht prents who hve these beliefs re less complint with therpeutic regimes. Since belief in destiny nd fte is dominnt element in the Bedouin culture (Meir 1983, 1987) but is not significnt prt of Jewish culture, differences between the Bedouin nd Jews re understndble regrding questioning destiny. Prents who do not believe tht people cn chnge destiny my tend to believe tht ll efforts to do so would be useless. We found evidence of greter self-pity, less hopefulness, nd less belief tht exercising will improve functioning mong the Bedouin, which could hve lrge effect on complince. Culturl differences between Jews nd the Bedouin re quite mrked nd significnt, nd the belief in destiny which ws found s good predictor of complince is only one element. Differences encompss wide rnge of spects including religion, lifestyle, fmily structure, fmily size, eduction, nd socioeconomic conditions. Therefore, the generlized vrible of being Bedouin or Jewish is the strongest contributory fctor of complince in the multivrite nlysis. Mny of the specific different chrcteristics between the two popultions s reported in the literture, relte to the utiliztion of medicl services (Crmel et l. 1990). Socioeconomic sttus of Bedouin prticipnts ws found to be lower thn tht of the Jewish popultion. Sttisticl nlysis showed significnt differences between the two ethnic groups in the eduction of both prents, which ws higher mong Jews thn mong Bedouin, nd the number of children in Bedouin fmilies ws found to be higher thn in Jewish fmilies. Prt of the Bedouin popultion in the study lives some distnce from min rods nd hs trnsporttion problems, which my lso explin the significntly lower rte of complince in keeping ppointments t the centre which ws found mong the Bedouin. This problem is especilly difficult for fmilies with low SES who my lso hve mny children nd lck economic resources. This is in ccordnce with previous findings of reltion between the lck of regulr trnsporttion nd complince (Alpert 1964, Leistyn nd Mculy 1966, Frncis et l. 1969). Stisfction with the services provided by our centre ws significntly lower mong the Bedouin. Stisfction with the Tble VI: Comprison between perceived implictions for fmilies on beliefs nd feelings for the complint nd non-complint groups Complint Non-complint p Implictions for the fmily Negtive economic implictions None Minor Severe <0.001 b Negtively effects cring for other fmily members, men (SD) 1.54 (1.10) 2.29 (1.54) <0.01 c Negtively ffects mritl reltions, men (SD) 1.51 (1.14) 1.68 (1.24) ns c Beliefs nd feelings Pity d, men (SD) 1.87 (0.68) 2.67 (0.89) <0.001 c Questioning destiny d, men (SD) 1.74 (0.89) 2.24 (0.98) <0.005 c Hopefulness e, men (SD) 2.33 (0.77) 1.85 (0.69) <0.001 c Belief tht exercising will improve functioning e, men (SD) 4.61 (0.84) 4.24 (1.24) <0.005 c Stisfction with services f, men (SD) 4.56 (0.77) 4.15 (1.22) <0.05 c Complince with recommended home therpy regime; b Bsed on χ 2 test or t-test; c Bsed on t-test; d Higher scores indicte stronger negtive feelings; e Higher scores indicte stronger beliefs in improvement; f Higher score indicte greter stisfction. 266 Developmentl Medicine & Child Neurology 2001, 43:

7 therpy provided by the centre, nd prentl beliefs tht the home therpy will improve their child s sitution seems to hve positive effect on complince, which hs been noted by others (Cdmn et l. 1979, Moxley-Hegert nd Serbin 1983, Smith et l. 1987, Gjdosik 1991, Lw nd King 1993). The Bedouin reported higher negtive effect on cring for other members of the fmily nd negtive economic implictions of hving child with disbilities thn did Jews which my be explined prtly by their lower socioeconomic sttus. When prents mke choices in cring for child with disbilities nd for other fmily members, it cn impose mjor chnges on the fmily lifestyle nd, therefore, could hve mjor negtive effect on complince (Bll 1976, Shope 1981, Jones 1983). It should be noted tht the severity of the child s disbility sttus, which significntly differed between Bedouin nd Jews, ws not found to be relted to complince. This is in ccordnce with the findings of Korsh nd collegues (1978) nd Smith nd collegues (1979). TRIAL INTERVENTION PROGRAMME In the light of these differences, we concluded tht specil ttention should be given to Bedouin prents by the rehbilittion centre stff s well s by community gencies nd services. Although lifestyle, culture, nd beliefs (such s the role of destiny in life) re difficult to chnge in reltion to improving therpeutic outcomes, more ttention nd better communiction might t lest increse stisfction with the rehbilittion centre services, which in turn could promote better complince in home therpy s well s ttending the centre. Bsed on this ssumption, smll tril intervention ws crried out in order to improve complince with keeping ppointments t the centre mong the Bedouin popultion. Appointments t the centre with consulting physicins, such s orthopedic surgeons, neurologists, neurosurgeons, nd geneticists, were chosen to be monitored during period of 8 months in During those months Bedouin prents were contcted by phone in order to encourge them to keep the ppointments. During the visit, simultneous trnsltion nd more detiled explntions were given to the prents to strengthen communiction. These interventions incresed the complince rte of ttendnce of the Bedouin to 76% (91 of 120 ppointments) to rech the similr level shown by the Jewish group of the originl study of 81% (108 of 133 ppointments). Although it ws short-term intervention nd focused only on very specific re of rehbilittion consultnts, these preliminry findings indicte tht incresed ttention through strengthened communiction, which probbly improves stisfction with services, cn gretly improve complince in keeping ppointments. Bsed on this, we suggest further studies investigte other interventions for longer periods to improve complince in groups t risk. This study concerned two smll ethnic groups, the Isreli Jews nd Isreli Bedouin, nd took plce in n typicl environment both geogrphiclly nd sociodemogrphiclly. We recommend further studies compring other groups in other environments. Similrly, there re significnt differences in culturl beliefs nd lnguge in other societies. By understnding these differences we cn improve complince, therpy nd therefore give the needed support to children nd fmilies. Accepted for publiction 26th July Acknowledgments This study ws supported by the Ern nd Georg Rothstein Center for the Study of Child Development. Thnks to Mr Mogher Khmisi for his help in prepring nd trnslting the Arbic questionnire, to Mrs Altun Wff for her ssistnce in dministering the Arb lnguge questionnire to the Bedouin prents, to Miss Niz Mor for her ssistnce in dministering the questionnire to the Jewish prents, nd to Mrs Judy Knopf, for her editoril ssistnce. References Al-Krenwi A, Moz B, Reicher B. (1994) Fmilil nd culturl issues in the brief strtegic tretment of Isrel Bedouin Arb. Fmily System Medicine 21: Grhm RJ, Moz B. (1996) The heling significnce of the Negev s Bedouin Arb Dervish. Socil Science nd Medicine 43: Alpert JJ. (1964) Broken ppointments. Peditrics 34: Bll WL. (1976) Improving ptient complince with therpeutic regimes: Hmilton Symposium exmines the problems nd solutions. Cndin Medicl Assocition Journl 111: Becker MH, Drchmn R, Kirsht J. (1972) Predicting mothers complince with peditric medicl regimens. Journl of Peditrics 81: Green LW. (1975) A fmily pproch to complince with medicl tretment: selective review of the literture. Interntionl Journl of Helth Eduction 18: Mimn LA, Kirsht JP, Hefner DP, Drchmn RH. (1977) The helth belief model nd prediction of dietry complince: field experiment. Journl of Helth nd Socil Behviour 18: Blum RW, editor. (1984) Chronic Illness nd Disbilities in Childhood nd Adolescence. Orlndo, FL: Grune nd Strtton. p Cdmn D, Shurvell B, Dvies P, Brdfield S. (1984) Complince in the community with consultnts recommendtions for developmentlly hndicpped children. Developmentl Medicine & Child Neurology 26: Crmel S, Anson O, Levin M. (1990) Emergency deprtment utiliztion by two subcultures in the sme geogrphic region. Socil Science nd Medicine 31: Dvis M. (1968) Physiologicl, psychologicl nd demogrphic fctors in ptient complince with doctors orders. Medicl Cre 6: Epstein LM, Cluss PA. (1982) A behviorl medicine perspective on dherence to long-term medicl regimens. Journl of Consulting nd Clinicl Psychology 50: Frncis V, Korsh BM, Morris MJ. (1969) Gps in doctor-ptient communictions: ptient response to medicl dvice. New Englnd Journl of Medicine 280: Gjdosik CG. (1991) Issues of prent complince: wht the clinicin nd resercher should know. Physicl nd Occuptionl Therpy in Peditrics 11: Cmpbell SK. (1991) Effects of weekly review, socioeconomic sttus, nd mternl belief on mothers complince with their disbled children s home exercise progrm. Physicl nd Occuption Therpy in Peditrics 11: Jessop DJ, Stein REK. (1991) Who benefits from peditric home cre progrm? Peditrics 88: Jones JG. (1983) Complince with peditric therpy: selective review nd recommendtions. Clinicl Peditrics 22: Kolobe HA. (1983) Reltionship between mother s chrcteristics nd her performnce of tretment progrms for her hndicpped infnt. South Afric Journl of Physiotherpy 39: Korsh BM, Fine RN, Negrete VG. (1978) Noncomplince in children with renl trnsplnts. Peditrics 61: Lw M, King G. (1993) Prentl complince with therpeutic interventions for children with cerebrl plsy. Developmentl Medicine & Child Neurology 35: Leistyn JA, Mculy JC. (1966) Therpy of streptococcl infection. Americn Journl of Disese in Children 111: Litt IF, Cuskey WR. (1980) Complince with medicl regimens during dolescence. Peditric Clinics of North Americ 27: Myo NE. (1978) Ptient complince: prcticl implictions for physicl therpists: review of the literture. Physicl Therpy 58: Rehbilittion Progrms nd Prentl Complince Ahron Glil et l. 267

8 Myo NE. (1981) The effect of home visit on prentl complince with home progrm. Physicl Therpy 61: Meir A. (1983) Diffusion of moderniztion mong Bedouin. Ekistics 303: (1984) Demogrphic trnsition mong the Negev Bedouin in Isrel nd its plnning impliction. Socioeconomic Plnning Sciences 18: (1987) Nomds, development nd helth: delivering public helth services to the Bedouin in Isrel. Geogrfisk Annler: Merrim Webster s Collegite Dictionry (1997). 10th edn. Springfield, Msschusetts: Merrim-Webster. Moxley-Hegert L, Serbin LA. (1983) Developmentl eduction for prents of delyed infnts: effects on prentl motivtion nd children s development. Child Development 54: Shope JT. (1981) Mediction complince. Peditric Clinics of North Americ 28: Short DL, Schkde JK, Herring JA. (1989) Prent involvements in physicl therpy. controversil issue. Journl of Peditric Orthopedics 9: Smith NA, Ley P, Sele JP, Shw J. (1987) Helth beliefs, stisfction nd complince. Ptient Eduction nd Counseling 10: Smith SD, Rosen D, Trueworthy RC, Lowmn JT. (1979) A relible method for evluting drug complince in children with cncer. Cncer 43: Winkler L. (1974) Prentl complince with post-dischrge recommendtions for retrded children. Hospitl nd Community Psychitry 25: World Helth Orgniztion. (2000) The Interntionl Clssifiction of Diseses, 9th Revision, Clinicl Modifiction 5th edn. Los Angeles: World Helth Orgniztion. Wynn KS, Eckel EM. (1986) Juvenile rheumtoid rthritis nd home physicl therpy progrm complince. Physicl nd Occuptionl Therpy in Peditrics 6: Developmentl Medicine & Child Neurology 2001, 43: