REHABILITATION OF THE HANDICAPPED CHILD - WHO CARES FOR THE CAREGIVER? ■ Seyi L A m o su n B S c Physiotherapy, P hD Physiology, Physiotherapy D epartm ent, University o f the W estern Cape ■ Benson A Ikuesan M S c Clinical Psychology ■ lyabo } Oloyede B S c Physiotherapy INTRODUCTION Rehabilitation has been defined as the restoration of the disabled to their fullest physical, m ental and social capabil­ ity1. In caring for the disabled, a "te a m " approach to the disabled's problem s is highly recom m ended. This is a proc­ ess in which m any people have various roles to play in the care of the disabled, with the professional contribution seen as one am ong many. The disabled and the caregiver are included in the team, and they have significant roles to play. In a situation w here the disabled is a child, the caregiver assum es a greater role. Caregivers of chronically disabled patients are often ex­ posed to m any burdens and disappointm ents that may limit their quality of life. Parents of chronically ill children w ere reported to experience m ore m arital stress than par- ents of healthy children . Such parents w ere also prone to ' a b s t r a c t n The mental health of caregivers of handicapped children (n=68), and of caregivers of children with minor ailments (n=40), was assessed using the General Health Questionnaire (GHQ). In the cross-sec- tional study, the caregivers of handicapped children had a signifi­ cantly higher mean score which was above the threshold score. This suggests that the task of caring tor disabled children may have a stressful impact on the caregivers which may contribute to psychiatric morbidity. There is need to periodically assess the mental health of the caregiver, even as the rehabilitation of the handicapped child progresses. Addressing the psychological disturbances in the caregiver should form part of the treatment of the handicapped child. OPSOMMING Die geestesgesondheid van versorgers van gestremde kinders (n = 68), en van versorgers van kinders met minder ernstige siektes (n = 40), is bepaal deur middel van die Algemene' Gesondheidsvraelys. In die deursneestudie het die versorgers van gestremde kinders ’n betekenisvolle hoer mediaan-telling gehad, wat hoer as die drem- peltelling was. Dit dui aan dat die taak om gestremde kinders te versorg, 'n stresvolle impak op versorgers mag he, wat tot psigiatri- ese morbiditeit mag bydra. Daar bestaan dus die behoefte om die geestesgesondheid van die versorgervan tyd tottyd te bepaal, terwyl die rehabilitasie van die gestremde kind vorder. Aandag aan die psigologiese versteuring van die versorger behoort deel uit te maak van die behandeling van die gestremde kind. depression, m ood lability, and the tendency to feel tired more than the parents of norm al children3,4. Johnson and Deitz5 confirm ed that m others w ith p h ysically h an d i­ capped children had difficulty getting aw ay from hom e to participate in social activities. It w as assum ed that the tim e-dem and placed on a m other caring for the physical needs of a disabled child interfered with the m oth er's abil­ ity to leave hom e and engage in other activities. In a longitudinal study on fam ilies w ith D ow n's syn­ drome babies (n = 30), m atched with a control of another set of families with norm al babies (n = 30), follow ed up for 18 to 24 m onths, few differences w ere reported in the physical or m ental health of the parents in the tw o groups . Though a sim ilar num ber of parents w ere treated for p sy­ chiatric problem s in the two groups, there w ere m ore m o th ­ ers with D ow n's syndrom e babies exhibiting clinically rec­ ognisable depression. Another longitudinal study in Britain6 m ade use of a m odified form of the G eneral Health Q uestionnaire (GHQ) to assess the m ental health of carers of stroke patients. Significant depression w as seen in 11-13% of the carers (n = 302) over the first two years after the onset of the stroke. In the first six m onths after the stroke, increased anxiety was the m ost com m only reported sym ptom in the carers. The patients' functional disability was associated with de­ pression in the carers over the first year after the onset of stroke. How ever, the level of anxiety and em otional dis­ tress observed in the carers after two years of the onset of stroke, was unrelated to the physical disabilities in the patients. The hypothesis presented from the findings sug­ gested that the depression in the carers was related to the occurrence of a m ajor, life-threatening illness, and hot be­ cause of the physical stress of caring. Romaris-Clarkson et a ft also reported the findings of a cross-sectional study in w hich the m ental health of parents of physically and m entally handicapped pre-school chil­ dren was com pared with that of parents of healthy pre­ school children. The degree of m orbidity as ascertained by the GHQ, was significantly greater in the m others of handi­ capped children (n = 54) than in the m others of children in the control group (n = 184). Thirty-five per cent of subject m others scored above the usual threshold score, w hile 21% of the control m others had a sim ilar score. The scores for the fathers in the subject group (n = 43) did not differ significantly from those of the control group (n =; 132). Tw enty-one per cent of subject fathers and 16% of control fathers scored above the threshold scores. Som e of the stress outcom es reported in a group of caregivers from two urban com m unities in the United States of Am erica w ere heart attacks, stroke, alcoholism , 7 8increased sm oking and depression/anxiety . M inkler et al reported som e other adverse health consequences, includ­ ing insom nia, back and stom ach pain, and exacerbations of SA Journal Physiotherapy, Vol 52 No 3 August 1996 Page 56 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. ) previously controlled chronic conditions such as hyperten­ sion and arthritis, am ong m iddle-aged and older women caregivers seen at some public hospital clinics. W e believe that these detrim ental effects on the health of the caregivers of handicapped children m ay jeopardise the efforts at reha­ bilitation of these children. The role of physiotherapy and exercises as a potential technique to prevent stress-related disturbances has been reported9. W e have observed that caregivers, who brought disabled children to the Departm ent of Physiotherapy, University College H ospital, Ibadan, N igeria, for treatm ent, often ex­ pressed anxieties about their wards. On m any occasions, the caregivers were observed to be discouraged w ith the prognosis of their wards. There w ere unconfirm ed reports that som e of the caregivers m ade attem pts to "d o aw ay" with their handicapped children. M ost of these caregivers were the parents of the handicapped children, but there w ere instances in w hich other relatives (grandparents, aunts, sisters) fulfilled the roles of caregivers. O ur study was therefore aimed at assessing the im pact of caring for handicapped children on the m ental health of the caregivers. Earlier studies have com pared the m ental health of caregivers of handicapped children with that of caregivers of non-handicapped children who had no re­ ported reason to take their children to the hospital2' 4. From our personal observations, we noted that there was a gen­ eral fear am ong people com ing to the hospital, as well as anxiety over the state of the patient brought to the hospital. It is not im possible that this state of fear and anxiety could b e a m ajor contributory factor to the m ental stress on the caregivers. H ow ever, the caregivers of non-handicapped and healthy children m ay have no visible cause for such anxiety. This study, therefore, focused on caregivers of non-handicapped children w ho were brought to the hospi­ tal because of m inor m edical ailm ents, for com parison. This is to elim inate the possible psychological im pact of taking a child to the hospital. This study was based on the hypothesis that caregivers of handicapped children w ould have higher scores in the GHQ than caregivers of non-handicapped children. We also expected that the level o f em otional distress in the carers of handicapped children w ould be related to the duration of tim e for w hich the carers cared for the handi­ capped child (defined as the period betw een the tim e of diagnosis of the handicap in the child by a doctor and the time of inclusion of the child in this study). The outcom e of this study m ay provide support for the suggestion that in the m anagem ent of the handicapped child,, an assessment of the caregiver should be carried out at various stages to provide intensive support for the carers w here and when necessary. METHOD This study w as conducted in Ibadan, Nigeria. Ibadan, the capital of Oyo State of N igeria, is one of the largest cities in Africa. It is located about 150 kms from Lagos, the former capital of N igeria. W ithin the city, health services are p ro­ vided by governm ent and private institutions. However, . Bladsy 57 Augustus 1996 our prelim inary study revealed that handicapped children are often referred to governm ent hospitals for rehabilita­ tion (unpublished data). This observation guided us in selecting the two m ain governm ent hospitals in the city. These w ere O ni M em orial H ospital, a hosp ital m ainly for children (controlled by the Oyo State G overnm ent), and the University College H ospital (UCH), a Federal Governm ent institution. The areas of U C H covered throughout the. study w ere the physiotherapy departm ent and the chil­ dren's outpatient departm ent. A t Oni M em o rial H ospital, the physiotherapy departm ent was covered. SUBJECTS Tw o groups of subjects w ere involved in this study. Group 1 consisted of caregivers of handicapped children receiving physiotherapy treatm ent at either the U niversity C ollege H ospital or at O ni M em orial H ospital. The criteria for selecting a handicapped child w ere sim ilar to those of Johnson and Deitz5. A handicapped child was defined as having difficulties in one or m ore specified areas of func­ tion, nam ely am bulation, feeding, toileting and com m uni­ cation. Sixty-eight handicapped children, aged 3-60 m onths (mean 19.5, SD 6.9) w ere identified. This sam ple included children with cerebral palsy (n = 36), poliom yelitis (n = 26), and paraparesis (n = 6). Group 2, which was the control group, consisted of caregivers who brought 40 ill children, aged 6 = 72 m onths (mean 18.0, SD 7.3), to the children's outpatient departm ent of the U niversity College Hospital. The diagnoses included cases of cough (n = 10), malaria (n = 24), m easles (n = 2) and skin rashes (n = 4). For both groups, a caregiver w as iden­ tified as the individual prim arily responsible for m eeting the daily physical needs of the child, particularly since the onset of handicap or illness, w hich included bringing the child to the hospital for treatm ent. The caregivers in Group 2 w ere w ithin the sam e age range as those in G roup 1. INSTRUMENTATION A standard questionnaire10, the G eneral H ealth Q ues­ tionnaire (GHQ) was used to elicit inform ation from the caregivers. GH Q is a self-rated screening tool designed to detect non-psychotic em otional illness in an individual. The 28-item questionnaire consists of four sub-scales (A to D), detecting somatic sym ptom s (A), anxiety and insom nia (B), social dysfunction (C) and severe depression (D). The questionnaire was translated into the local language for those who could not read English. Each of the 28 item s of the questionnaire h as fou r re­ sponses. Responses one and two w ere considered in signifi­ cant to affect the health status of an individual. The scoring m ethod used was 0-0-1-1 rather than the Likert rating scale10. Therefore, the severity rating, or the sum of all the m orbid ratings, was carried out by counting the num ber of tim es the caregiver responded to each item by responses three and four. The m axim um obtainable score w as 28, w ith a score higher than four (the threshold score) suggesting that the individual m ay receive a psychiatric diagnosis if exam ined. SA Tydskrif Fisioterapie, Deel 52 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. ) PROCEDURE Individuals who brought the children to the hospitals for physiotherapy or for m edical treatm ent, w ere interviewed to establish their relationship with the children. Those iden­ tified as the caregivers w ere then approached for consent for inclusion into either the experim ental or the control g ro u p s. T h e q u e s tio n n a ir e w as a d m in is te re d to the caregivers betw een 08h00 and 12h00 on various days of the week, excluding weekends. In addition, dem ographic data w ere collected on the caregivers and the children. DATA ANALYSIS In each group, the data collected w ere subjected to both descriptive and inferential statistical analysis. The results were presented as percentages, m eans and standard devia­ tions. The unpaired student t-test was used to com pare the mean scores of the two groups. A correlation analysis of the level of em otional distress and the time duration when the carers cared for the handicapped children was carried out. The level of significance was set at p<0.05. RESULTS Table I shows the dem ographic data of the caregivers in Group 1 (n = 68) and Group 2 (n = 40). The caregivers in both groups were aged 19-50 years, w ith a m ean age of 28.5 years (SD = 9.1) in Group 1, and a m ean age of 29.2 years (SD = 5.1) in Group 2. In each group there w ere m ore female caregivers and they w ere the m others of the patients. The m ale c a re g iv e rs w ere the fathers. W hile m o st o f the caregivers w ere m arried, 16 caregivers in Group 1 and two in Group 2 w ere single parents. The m ale single parents w ere either separated from their spouses or the spouses were dead. The fem ale single parents w ere separated from their spouses. M ost of the subjects in b oth groups w ere gainfully em ­ p loyed, eith er w ith the governm ent or privately. The caregivers in Group 1 had been caring for the children for 2-20 days (the duration of the illness). The m ean scores on the G eneral H ealth Questionnaire are reported in Table I. Caregivers in Group 1 had higher scores (0-23) than the caregivers in Group 2 (0-17). The difference betw een the two m ean scores was statistically significant (p<0.001). There w as no significant difference betw een the m ean ages of the subjects in the two groups (p>0.05). M ore of the caregivers in G roup 1 (51.5% ) ob­ tained scores above the threshold score of four (range 5-23), while only a few (7.5%) of the caregivers in Group 2 ob­ tained scores above the threshold score (range 10-17). In Group 1 (n = 68) there was no significant relationship found betw een the scores obtained and the duration of care (r = 0.0021; p<0.05). There w as no m ale caregiver am ong the caregivers who scored above the threshold score in either group. The item s on the G H Q scored m ost often by the caregivers of handicapped children were: not feeling per­ fectly well (n = 50), getting edgy and bad tem pered (n = 42), feeling constantly under strain (n = 31), and inability to enjoy norm al daily activities (n = 18). Finally, the female caregivers in Group 1 (n = 54) had m uch h ig h e r,scores (mean score = 8.49; range 0.23) than the m ale caregivers (n =14; m ean score = 0.71; range 0-4). The difference was statistically significant (p<0.001). DISCUSSION Daily problem s have been identified as one of life's events causing stress in an individual. Caregiving may negatively affect the physical health and econom ic circum ­ stances of caregivers, and the m ost consistent consequence m ay be em otional strain. M ost of the caregivers of the handicapped children (51.5%) obtained scores above the threshold score, suggesting that these caregivers may re­ ceive a psychiatric diagnosis if exam ined. These caregivers also expressed feelings of ill health, strain, a bad tem per and lack of fulfilment. These com plaints w ere sim ilar to those 3 5 8 *reported in earlier studies ’ ' . This pointer to the em otional health status of the caregivers provides an im portant re­ m inder of the need to consider the physical and em otional needs of caregivers of handicapped children. It is significant that all the caregivers in G roup 1 who could receive a psychiatric diagnosis (n = 35) w ere women. This shows that about 64.8% of all the fem ale caregivers in Group 1 had scores above the threshold score, while all the m ale caregivers (n = 14) had scores below the threshold score. This m ay be a pointer to some m ore serious problem s the fem ale caregivers could b e facing. Therefore, a delay in identifying the needs of the fem ale caregivers of handi­ capped children and providing intensive support m ay lead to additional problem s. H ow ever, the outcom e of this study differs from the report of R om ans-C larkson4 in which a smaller percentage of m others (35% ; n = 54), and 21% of the fathers (n = 43) of handicapped children had scores above the threshold score. A possible reason why the m ale caregivers in our study had scores below the thresh­ old score may b e related to some cultural attitudes in Nigeria. Often the society holds the w om an responsible w h en ev er a ch ild is p h y sica lly or m en tally disabled. W om en are therefore the m ain caregivers w ith very little support from the men. The m ale caregivers in this study possibly received some support at hom e from other fem ale relatives. Thus, the burden of caring for the handicapped child w as shared. Table 1: Dem ographic data and GHQ scores of caregivers Variables Group 1 (n = 6 8 ) Group 2 (n = 4 0 ) Mean Age (years) (SD) 2 8 .5 (9 .1 ) 2 9 .2 (5 .1 ) Male caregivers (n(% ) 1 4 ( 2 0 . 6 ) 2 (5 .0 ) Female caregivers n(% ) 54 (7 9 .4 ) 3 8 (9 5 .0 ) Married n(%) 52 (7 6 .5 ) 3 9 (9 7 .5 ) Single parents (m ale:fem ale:) 1 4:2 1:1 Employed n(%) 58 (8 5 .5 ) 3 7 (9 2 .5 ) Duration o f caring 3 - 5 0 months 2 - 2 0 doys GHQ scores Mean (SD) 6 . 8 * (5 ,8 ) 1 . 1 * (3 .8 ) Range 0 - 2 3 0 - 1 7 N(%) likely to receive psychiatric diag­ 35 (5 1 .5 ) 3 (7 .5 ) nosis if examined SD Standard deviation * Significant difference (p < 0 .0 0 1 ) GHQ General Health Questionnaire SA Journal Physiotherapy, Vol 52 No 3 August 1996 Page 58 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. ) It should be noted, how ever, that the GH Q scores alone are not conclusive in determ ining the m ental state of the caregivers w ithout a clinical evaluation. In the study of Goldberg and H illier10, in w hich GHQ scores were related to the clinical status of 200 patients, 116 (58%) had scores above the threshold score, but eight of these w ere found to be clinically norm al. W e recom m end, therefore, that a clini­ cal psychologist be perm itted to interact with caregivers of handicapped children in order to identify such caregivers who may require some form of support. CONCLUSIONS This study has investigated only one aspect of the poten­ tial stress on caregivers. It has not m easured directly the financial cost, the reduction in the caregiver's social life, the effects on family or m arital relationships, or the effects on the physical health of the caregiver. A ll these factors are also im portant. H ow ever, this study supports the evidence that suggests that caring for a handicapped child is stress­ ful, and may contribute to psychiatric m orbidity. Since the caregivers of handicapped children spend a fairly long period of tim e in our rehabilitation/physiotherapy depart­ ments during the treatm ent of their wards, it is recom ­ m ended that the m ental state of the caregivers be assessed periodically so as to provide supportive therapy where and when necessary. In addition, clinical studies of the functional health status of caregivers and lo ng itud inal investigations of changes in physical and em otional health are needed. Fur­ ther research attention should be focused too on the role of form al and inform al supports and resources w hich may help the caregivers of handicapped children cope w ith their ch a lle n g in g ro le. F in a lly , the s p e c ia l n e e d s o f th e se caregivers deserve research attention, and intervention studies. REFERENCES 1. G loag D. In trod uction and a look a t so m e sh o rt term orthop aedic rehabilitation. British M ed ical Jou rn al 1985:290;43-46. 2. Sab beth B F, Leventhal J M . M arital ad ju stm en t to chronic childhood illness: A critique of the literatu re. P aediatrics 1984:73;762-768. 3. G ath A. T he im pact o f an abn orm al child u p on the p arents. British Jou rn al o f P sychiatry 1977:I30;405-410. 4. R om ans-C larkso n S E, C larkson J E, D ittm er I D et al. Im p act o f a handicap ped child on m en tal health o f p arents. British M edical Journal 1986:293;1395-1397. 5. Joh nson C B, D eitz J C. A ctiv ity p atte rn s o f m others o f handicap ped children. P hysical an d O ccu pational Therapy in P aediatrics 1985:5;17-25. 6. W ad e D T, L egh-sm ith J, H e w er R L. E ffects of liv in g w ith and looking after survivors o f a stroke. British M ed ical Jou rn al 1986:293;418-420. 7. Burton L M . Black g ran dp arents rearin g ch ild ren o f dru g-add icted p a re n ts: S tre s s o rs , o u tc o m e s , and so cia l n e ed s. T h e G eron tologist 1992:32;744-751. 8. M in k ler M , Roe K M , P rice M . T he p h ysical and em otion al health of gran dm others raising g ran dch ild ren in the crack cocaine epiderm ic. T he G erontologist 1992:32;752-761. 9. V ingerhoets A J ] M , M arcelissen F H G. Stre ss research: Its p resent status a n d is s u e s for fu tu re d e v e lo p m e n ts . S o cia l S c ie n c e an d M ed icin e 1988:25;279-291. 10. G old berg D P, H illier V F. A scaled v ersion of the G eneral H ealth Q uestionnaire. P sychological M edicin e 1979:9;139-145. B » B » T - M E D I C A L BBT has developed an unrivalled reputation fo r helping South African Physiotherapists to find w ork in the UK. We would like to invite you to come and meet one o f o ur consultants during o ur next round o f interviews in South Africa. This will give you the chance to S66 w hat has S£t US apart and ensured th at hundreds of therapists have had an excellent experience w ith us. We will be in: Johannesburg and Cape Town on the 23rd aftd 24th of August on the 5th» $th and 7th of August* B B T s t ill o ffe r s : top rates of pay Any length of contract Accommodation arranged Ivery UK Hospital covered Work for any grade arranged Assignment Continuity Excellent bonus schemes Mail Forwarding Your own recruitment consultant Visa assistance Computerised Weekly payment Free Tax advice And for all locums taking th air firs t UK position w ith 0 8 T,", C P S M m e m b e rs h ip is re fu n d e d - OKjanise a tim e to m eet us. If you are unable to atten d p h a s e stiff c< OtKt & e to® sartd you our free information pack and, o f course, CtflvF b * b * t 14 Bftefebqpiam PaJaea (toad, London SW1W oQP. Fax; 09 44 171 233 8004/S E-Maffc reer«H©W>t«O.U T E L E P H O N E F R I 0800 998154 Biadsy 59 Augustus 1996 SA Tydskrif Fisioterapie, Deet 52 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. )