FOSTERING COMMUNITY DEVELOPMENT UTILISING DOMICILIARY PHYSIOTHERAPY AS A TOOL ■ M / Putter, M S o c S c (Adm inistration & P la n n in g), Physiotherapy D epartm ent, U niversity o f Cape Tow n INTRODUCTION David Korten defines com m unity developm ent as "a process by which the m em bers of a society increase their personal and institutional capacities to m obilise and m an­ age resources to produce sustainable and justly distributed im provem ents in their quality of life consistent with their own aspirations" . The m ost im portant goal of this devel­ opm ent is the grow th of the people concerned in order to realise m ore of their potential2. Com m unity involvem ent in health care is a very good way of m otivating grass-roots people to participate in decision-m aking and action which affect their lives '4. As a result of im proved m edical technology, increased life expectancy, decreased hospital stay and the current grow th in the population the need for physiotherapy reha­ bilitation services is constantly increasing5,6. How ever, there are insufficient physiotherapists to provide the nec­ essary therapeutic intervention services. This m eans that m any disabled people are not able to achieve their potential functional capacity and thus the quality of life within their families, com m unities and society at large is affected nega­ tively. By failing to achieve their m axim um functional level the burden to their fam ilies and the com m unity is in- creased . Caregivers are the m ost im portant persons in the reha­ bilitation of chronically disabled relatives. Once they are discharged from hospital, the responsibility falls entirely on the caregivers at hom e who spend a large portion of the 8 9day looking after the disabled person ' . (Nu m m ar y ^ Following a request from the Manenberg community a domiciliary physiotherapy programme was established in order to improve the quality of life of the severely disabled persons and their caregivers living in the area. Emphasis was placed on the community development process to encourage the participants to take responsibility for their own rehabili­ tation needs. Forty-three disabled persons were provided with rehabilitation regi­ mens and their caregivers were trained in the physiotherapy manage­ ment of their relatives until maximum benefit had been achieved. Measurements of the functional level before and after the intervention showed a significant improvement even though the injury or onset of disease had occurred from two years to eleven years previously. This improvement demonstrated that the caregivers, many of whom were functionally illiterate, were competent at performing the physio­ therapy techniques required to rehabilitate their disabled relatives. Key words: caregiver training, rehabilitation, empowerment The study was set up at the initiative of the M anenberg Health Project Com m ittee (M HPC). They requested that the Physiotherapy D epartm ent, U niversity of Cape Town assist them with effecting an im provem ent in the care of the severely disabled m em bers of their com m unity. A partner­ ship was thus developed betw een the Physiotherapy De­ partm ent and the M HPC. The disabled w ere provided with re h a b ilita tio n p ro g ram m es and th e ir ca reg iv e rs w ere trained in basic physiotherapy techniques by final year students under supervision of teaching staff. In turn the students gained experience in rehabilitation o f long-term patients and in teaching caregivers to do sim ple physio­ therapy techniques and how to m anage their relatives within the hom e environm ent. AIM OF THE STUDY The aim of the study was to investigate the effectiveness of a dom iciliary physiotherapy program m e that a) provided long-term severely disabled persons with re­ habilitation regimens b) trained the caregivers in the physiotherapy m anagem ent of their disabled relatives. The em phasis was placed on capacity building of the individuals involved and not on providing statistical evi­ dence of the various disabilities or personal details of the caregivers. PARTICIPANTS M anenberg is a low -cost housing estate, situated on the Cape Flats 25 kilom etres from Cape Town. The m ajority of the people have a standard four or less education and onl^ 37.45% of the population earned an incom e during 1991 . H ousing facilities in this suburb are very lim ited. Thirty- seven percent of the dwellings have to share outside toilets with three other dw elling units and have no b ath or shower provided. The average num ber of people living in a two bedroom ed unit ranges betw een eight and 1511. The subjects in the study com prises 43 bedbound. or housebound individuals and their caregivers. The ages of the disabled ranged from 22 years to 73 years with a m ean of 50 years. The predom inant num ber fell into the 61 - 70 age group. This is to be expected since the largest group of p a rticip a n ts su ffered fro m cere b ra -v a scu la r accid en ts (CVA's) (Table I). Table 1: Classification of medical conditions Condition Number (n = 4 3 ) Respiratory 2 Quadriplegia 7 Paraplegia 2 Hemiplegia 20 Head injury 9 H em iplegia/A m putation 3 SA Journal Physiotherapy, Vol 52 No 3 August 1996 Page 62 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. ) The length of tim e from the onset of disability to the first hom e visits on the program m e ranged from two years to 11 years with a m ean of 4.65 years so that m any of the partici­ pants actually fell into younger age groups at the time of injury or onset of disease. Tw enty-nine participants w ere totally bedridden, nine were able to m ove from room to room w ith the assistance of a helper and five w ere able to walk w ith some form of w alking aid. The caregivers w ere either im m ediate fam ily m em bers or part of the extended fam ily who lived in the same dw elling as the disabled person and whose responsibility it w as to care for the relative. Eight percent of the caregivers were m ale and 92% female. METHODOLOGY The study w as carried out by m eans of action research. This m ethod of research is frequently used in business and the social sciences. The approach differs from other forms of research as it is conducted in the com m unity setting and is com m itted to collaboration betw een the researcher and participants of a project. It studies real-life situations and program m es and m akes no attem pt to manipulate the vari­ ables12. As the object of this study was to foster com m unity developm ent it engaged capacity building of the partici­ pants by incorporating the m em bers of the fam ily in the planning, im plem entation, analysis and evaluation of the program m e. The principal tool used was non-form al edu­ cation, based on the M H P C 's felt need for the participants to acquire the necessary know ledge and skills to deal with their physical problem s. By using action research as the form of inquiry it allow ed increm ental im provem ents to be made to the project as soon as shortcom ings w ere identi­ fied. W hen clients are participants in research rather than "su bjects" they are m ore likely to be fam iliar with and able to contribute to the practical problem s involved w ith the 13im plem entation of projects . The disabled w ere identified to some extent by com m u­ nity leaders and posters in com m unity centres, but the majority joined the program m e by m eans of snowballing. The program m e w as conducted over two years and involved 42 final year students. As part of their com m unity experience requirem ents they each spend three m ornings per week for four weeks in M anenberg. Tw o students and a m em ber of teaching staff visited the hom e of a patient. They com pleted a com prehensive questionnaire and per­ form ed a full assessm ent which included functional, stress and socialisation scales of m easurem ent. For the purposes of this article only the functional assessm ent is included as the questionnaire com prises 14 pages and w ould have been too long to include. The functional ability was m easured by scoring 14 different basic activities of daily living according to the am ount of assistance the individual required (Table II). T a b l e II : C h a r t o f f u n c t i o n a l a c t i v i t i e s Daily activity Independent (4 ) Independent w ith aids (3 ) Indepnedent w ith assistance (2 ) Dependent (1 ) Feeding Tailet use W ashing/bathing Dressing/grooming General bed m obility Sitting Getting in and out af bed Sit to stand M obility from room to room M obility from room to to ilet Kitchen activities Climbing stairs/ram p Getting in and out of transport Walking outside TOTAL SCORE (5 6 ) The participants were educated in detail about the m edi­ cal condition affecting the disabled and realistic goals were set for their functional achievem ent. It was explained to them that treatm ents w ould not be carried out on a daily basis as a service, but that the intention was to teach the caregivers how to assist them to achieve their m axim um potential of independence. The disabled w ere taught exer­ cises and functional activities to be carried out with the assistance of their relatives. D em onstrations of the required physiotherapy techniques w ere given to the caregivers and they w ere taught how to perform these effectively them ­ selves. Techniques that w ere found necessary to b e taught m ost frequently w ere passive m ovem ents, positioning for stroke victims, transfers, m aintenance exercise regimens, assisted w alking and personal back care. Participants w ere encouraged to contribute to problem so lv in g reg ard in g the p ro m o tio n o f fu n c tio n a l in d e­ pendence of the patient. For exam ple, they m ade sugges­ tions regarding the arrangem ent of the furniture so that the disabled could w alk around the house independently by holding onto the furniture as the space in m ost of the houses w as too confined to accom m od ate w alking fram es or crutches. They w ere also inform ed about local resources available and taught how to utilise them. By approaching the City C ouncil H ousing O ffice they w ere able to have handrails added or altered to facilitate negotiation of steps and also to have ram ps built for ease of access for w heel­ chair users. Visits took place m ore frequently initially (two or three times per week), w hilst the caregivers' techniques and m anagem ent needed to be m onitored and the regim ens of the disabled needed to be progressed. Thereafter, they took place as frequently as w as necessary. This varied betw een once per week and once per m onth to m eet their individual needs and as their rate of progress dem anded. "H o m e­ w ork " to be carried out by the participants was given in the Bladsy 63 Augustus 1996 SA Tydskrif Fisioterapie, Dee152 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. ) form of diagrams as the m ajority of them were functionally illiterate. The visits continued until the teaching staff m em ber considered the disabled and caregiver had gained m axim al benefit from the assistance provided. The num ber of visits each participant received ranged from three to 26. The reassessm ent w as then done. This was perform ed by a different pair of students doing their com m unity rotation under supervision of a different m em ber of the teaching staff. A second questionnaire was com pleted and the func­ tional, stress and socialisation levels w ere m easured for the second time. During the two years that the study w as being conducted the researcher held regular m onthly m eetings with the M HPC to evaluate, m onitor and m ake increm ental changes to the program m e w here necessary. FINDINGS W ilcoxon's signed rank test was perform ed on the func­ tional scores to com pare the group before and after the intervention program m e. As can be seen in Table III there was a significant im ­ provem ent in the functional level (p<0.0001). This im ­ provem ent is presented graphically in Figure 1. Functional im provem ent occurred in the majority of patients irrespective of the length of time since disable­ ment. It was achieved even am ongst the disabled who had developed m oderately severe contractures. In spite of the fact that som e of the individuals had been fully rehabilitated in hosp ital and their caregivers had been taught physiotherapy techniques prior to their relatives' discharge m any of them had regressed since being at home. As the caregivers had not b een able to adapt the techniques learned in hospital to their hom e environm ents they had discontinued them. Adaptations to the techniques were essential due to the lack of space in the dwellings and the uneven ground surfaces of the environm ent. Sim ilar stud­ ies conducted in the United Kingdom concluded that the best place to train the caregivers to ensure successful im ­ plem entation of the rehabilitation program m es learned in hospital is the hom e environm ent1 '15. Table III: Functional level scores before and after program m e Functional Score Functional Score Disabled Before After Disabled Before After 1 48 56 23 14 45 2 46 56 24 30 35 3 14 19 25 18 23 4 29 3 / 26 1 / 29 5 14 14 27 20 40 6 1 / 1 / 28 14 20 7 14 14 29 16 23 8 14 14 30 25 39 9 21 21 31 24 48 10 14 14 32 22 33 11 14 14 33 40 51 12 2 3 43 34 23 3 / 13 25 40 35 36 41 14 14 36 36 16 23 15 18 30 3 / 20 28 16 21 44 38 24 3 / 1 / 15 26 39 1 / 25 18 22 3 / 40 25 36 19 14 38 41 38 56 20 16 24 42 30 50 21 14 39 43 33 4 / 22 19 56 n = 4 3 p < 0 .0 0 0 1 Fifty percent of the disabled who w ere bedridden or unable to w alk at the beginning of the program m e w ere in possession of functional appliances that they had never used. These had been supplied by the hospitals prior to their discharge. Reasons given for not having used the appliances included • the house was too sm all in w hich to m anipulate the w heelchair • there was insufficient space to negotiate betw een the furniture in the house and the ground surface outside was of soft sand and the crutches sank into the soil • they had never been taught how to use the w alking aid in the hospital and w ere afraid to use it in case they fell • they had regressed and could no longer walk • the w heelchair had been provided for use outside, but the patient lived on the first floor of the block of flats and was unable to negotiate the stairs to reach ground level. Very little conventional rehabilitation equipm ent was found to be necessary as household furniture frequently proved to be m ore relevant in prom oting function than the expensive equipm ent used in hospital departm ents. The participants' responses to the question "W h at do you understand by the term stroke" in the questionnaire dem onstrated that they had very little understanding of the m edical condition affecting them /their relative, its causes Functional Level j — Bef or e —* — After j Disabled Figure 1: Functional level before and after program m e SA Journal Physiotherapy, Vol 52 No 3 August 1996 Page 64 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. ) and how to avoid preventable com plications. This was due, in part, to the fact that m any of the disabled had never received any form of rehabilitation. It m ay also have been as a result of them not being exposed to any form of education by the health professionals at the time of dis­ charge from hospital or due to m isunderstanding of the explanations given on the part of the family. A great deal of confusion arose w hen they w ere questioned on the length of time they had received physiotherapy treatm ent in hospital. M any patients w ere unable to distinguish be­ tw een physiotherapy and occupational therapy. Others claim ed they had never received physiotherapy in spite of being in a spinal unit for five m onths and yet they were aware of stretching, skin care and how to transfer from bed to wheelchair. W orking in isolation of other m em bers of the health team caused a great deal of frustration as their expertise was frequently essential in order for the physiotherapy treat­ m ent to be m axim ally effective. For exam ple, one of the stroke patients could not be treated for several weeks as he had a severe attack of gout and his knee joints were too painful for his to w eightbear. He had no transport of his own and no m oney to get h im self to the D ay H ospital in order for the doctor to prescribe the necessary medication. The services of a social w orker, doctor and nursing sister w ere essential in order to have this aspect of his m anage­ m ent dealt w ith expeditiously so that his physiotherapy treatm ent could continue unim peded. DISCUSSION There m ay very w ell be an optim um period of tim e for im provem ent of function, bu t that does not m ean that rehabilitation should not be attem pted on the basis that the injury or onset of disease occurred a substantial time ago. A m ajor problem w orking w ithin a com m unity like M a­ nenberg on a long-term basis would be to sustain work satisfaction and m otivation am ong the physiotherapists. This is largely due to the isolation from colleagues and less-than-ideal environm ent, for exam ple, standard of hy­ giene in w hich to practise. The constant dem ands of using initiative to stim ulate the participants to solve their own problem s was also stressful as there were no other health workers w ith w hom the problem s could be shared. Tim e m anagem ent was found to be the m ain difference betw een the physiotherapy practised in hospitals as op­ posed to that w ithin the M anenberg com m unity. This ap­ plied specifically to the am ount of time spent in dealing directly with the disabled and the time spent on activities which provided support for them and their families. These activities included education of the participants regarding their m edical conditions, assessing and teaching them how to m anage them as well as m onitoring their progress and providing psychological and em otional support. Liaison with the City Council for m inor alterations to the dwellings was also very tim e consum ing. IMPLICATIONS FOR PHYSIOTHERAPY The value of physiotherapy education in the manage- Bladsy 65 Augustus 1996 m ent of the disabled and their fam ilies in rehabilitation cannot be overem phasised. This is particularly so in a country where there are insufficient resources to provide services in rehabilitation centres to everybody in need. By spending time on this aspect p rior to discharge the disabled and their fam ilies can be taught how to take responsibility for their own health needs. Follow -up hom e visits ensure that hours of rehabilita­ tion in hospital are not w asted by being discontinued on discharge. Visits done soon after discharge can ensure that the disabled have the opportunity of reaching their m axi­ m um functional ability w ithin their fam ilies and their caregivers can be provided with the necessary skills to effectively achieve and m aintain this in the environm ent in which they need to perform them. This is also a m eans of ensuring that only appropriate appliances are prescribed and that they are returned when no longer required. The hom e visit is a m eans of providing em otional sup­ port to the fam ilies during the initial period after h osp ital­ isation w hen they m ost need it. CONCLUSION A dom iciliary physiotherapy program m e is an effective means of providing rehabilitation for long-term severely disabled people. Their level of functional ability increased significantly, regardless of the length of tim e from the onset of disease or injury. In those participants w here physical im provem ent was not possible their quality of life was enhanced by the in­ creased level of understanding that their fam ilies acquired. Caregivers who w ere educated about the m edical condi­ tions of their relatives gained the confidence to know when to encourage independence and w hen to accept the fact they w ere not able to be m ore independent. This ensured that they did not have unrealistic expectations of them. Because of the broad nature of the w ork, experienced and m ature physiotherapists who are fam iliar with the resources in the com m unity are essential to initiate and im p lem en t the in d iv id u al p ro gram m es. T h is involves counselling of family m em bers, teaching the disabled and their fam ilies how to utilise local resources, liaising with other health disciplines and collaborating w ith other sec­ tors dealing with health m atters in the com m unity. H ow ­ ever, once intervention program m es had been established the caregivers w ere found to be com petent at im plem enting the physiotherapy techniques and the m aintenance p ro ­ gram m es of their disabled relatives them selves. This could b e observed by the im provem ent in functional ability that the patients dem onstrated as the physiotherapists only planned the intervention program m es, but the caregivers had to carry out the day-to-day rehabilitation techniques themselves. By being so em pow ered they becam e self-suf- ficient in m anaging the daily rehabilitation and m ainte­ nance requirem ents of their disabled relatives. Although com m unity developm ent per se w as not m eas­ ured the am ount that took place during this study can be inferred from the level of physical im provem ent achieved SA Tydskrif Fisioterapie, Dee152 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. ) in the disabled. This occurred as a result of the increased capacities of the disabled and of the caregivers to manage their relatives effectively themselves. In order for the rehabilitation of disabled to be success­ ful, a com m unity interdisciplinary team approach is essen­ tial. M em bers of the team should incorporate doctors, nurses, occupational therapists, speech therapists, social w ork ers, p sy ch o lo g ists and co m m u nity reh abilitation workers. Although physiotherapy is only a com ponent of the team it form s an integral part, bu t is limited unless the other m em bers of the team are available. For final rehabilitation of long-term severely disabled to be successfully achieved hom e visits are essential to p ro­ vide the physiotherapist with com prehensive knowledge of the environm ent, fam ily situation and rehabilitation needs of the individual. This cannot be envisaged and planned for from a hospital or outpatient department. W ithout hom e visits months of expensive physiotherapy in hospital are often wasted. Patients are unable to adapt the rehabilitation techniques learned in the spacious gym or ward to the limited area of the hom e environm ent nor are they able to substitute expensive equipm ent used in hospi­ tal with simple appliances from the home. Assistance from the physiotherapist in the form of one or two home visits is crucial if the functional level of the disabled is to be m ain­ tained after discharge from hospital. REFERENCES 1. K orten D C. People-C entred D ev elo p m e nt Forum . In: Louvv, L ionel R. Process and P re-requisites N ecessary for the Su ccessfu l Im p lem en ta­ tion and M an agem en t of C om m un ity D ev elo p m e nt Projects. Social W ork 1993;29(2):94-99. 2. K orten D C, K lau ss R. P eople-C entred D evelopm ent. H artford, Conn. K um arian Press 1984. 3. A dam s R. Self-help, Social W ork an d E m poivcrm ent. M acM illan , London 1990. 4. R ifkin S B. T he R ole o f the P ublic in the P lan ning, M a n ag em en t and Evaluation o f H ealth A ctiv ities and P rogram m es, inclu d ing Self-care. Social Science an d M edicin e 1981;15A :377-386. 5. C ondie E. A T herap eu tic A p p roach to P h ysical D isability. P hysiotherapy 1991;77(2):72-77. 6. M enon P B M. D ev eloping C o m m u n ity-Based R ehab ilitation Services for the D isabled by the Prim ary H ealth C are A p p roach . International R elw bilitation M edicin e 1984;6:64-66. 7. Sharm an E M . T he Problem s of a R ehab ilitation Service. P hysiotherapy 1972;58:209. 8. G loag D. N eeds and O ppo rtunities in R ehabilitation. British M edical Jou rn al 1985;290 February:368-372. 9. Putterhill J S, D isler P B, Jacka E et al. C op ing w ith ch ron ic illness. Part II. T he carer. Sou th A frican M edical Jou rn al 1984;65:891-894. 10. C entral Statistical Services. O fficial Pop u lation C ensus. Pretoria, South Africa 1991. 11. M an enberg H ou sing Estate O ffice. 12. Su sskind E C , K lein D C. C om m unity Research: M ethods, P aradigm s and A pplications. Praeger 1984. 13. V an V laend eren H , N kw inti G. C o m m u n ity -b ased R esearch in Black Rural C om m unities. Paper delivered at P A SA C o nferen ce, P o rt E liza­ b eth 1990. 14. Frazer F W. Rehabilitation within the C om m unity. F aber and F ab er 1982. 15. Forster A , Young ]. T he R ole o f C o m m u n ity P hy sioth erap y for Stroke Patients. Physiotherapy 1990;76(8):495-496. CEREBRAL PALSY IN GIYANI ■ Joanne Potterton B S c Physiotherapist Physiotherapy D epartm ent, U niversity o f the W itwatersrana INTRODUCTION Giyani is situated approximately 180km from the Zim­ babwe/South Africa border. The area has suffered under a severe drought during the past seven years and temperatures reach 42°C during the summer. Giyani was the capital of the former "Bantu Homeland" Gazankulu. S ' ' ABSTRACT This study sets out to establish the epidemiology of cerebral palsy in the drought stricken Giyani district in the Northern Province. Seventy- nine children with cerebral palsy were assessed at Nkhensani hos­ pital. The cause and type of cerebral palsy were established as well as the main concerns of the parents. Thirty-two percent of cerebral palsy was found to be due to postnatal causes, which may be attributed to the prevalence of meningitis and gastroenteritis. Only sixteen percent of the children had diplegia, which is in keeping with findings in other third world countries. Major concerns expressed by the parents included issues of education and institutionalisation as facilities for children with disabilities in this area are inadequate^ An obvious need exists to impart neuro-developmental skills to therapy assistants and to parents who play the biggest role in managing ^ children with cerebral palsy in the Northern Province.__________ Accommodation in the area varies from western type houses, found in towns and which have water and electricity, to tradi­ tional mud huts with thatched roofs which usually have no electricity. In the villages water is collected from rivers or from communal water points. At the time this study was being con­ ducted large number of Mozambican refugees (15 000) stayed in makeshift shacks in a refugee camp 2km outside Giyani. They were part of a voluntary repatriation programme run by the United Nations. However, this was a slow process and during this time the refugees made use of the health services in Giyani. Employment opportunities in this areas are limited and many men become migrant workers, going to the cities to work on the mines or in industry. They often return home only at Christmas time. This means that most households are headed by women who supplement the money sent home by their husbands by subsistence farming. Maize and pumpkins are most commonly grown. Unemployment and poverty are major problems in Giy­ ani. The Northern province is the poorest area in the country, the average gross geographic annual per capita product was only R1266 in 19931. Health services in the Giyani district are inadequate. Nkhensa ni hospital is a secondary hospital with 300 beds. It has no intensive care or high care facilities and only minor surgical procedures are carried out. It has 12 satellite primary health care clinics which vary in distance from 2km to 57km from the hospital. Transport between the clinics and the hospital is unreliable and patients often have to walk. The tertiary hospital to which patients requir­ ing intensive care or major surgery are sent, is 300km away in Garankuwa and again transport is unreliable. Nkhensani hospital is understaffed and poorly equipped, eleven medical officers service the hospital and all the clinics. The hospital has no regis­ SA Journal Physiotherapy, Vol 52 No 3 August 1996 Page 66 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. )