COMMUNITY NURSING CARE FOR THE MENTALLY RETARDED

Die mees doeltreffende sorg vir die geestesvertraagde is die omvattende gesinsgeoriënteerde sorg van die multidisiplinêre span. As lid van hierdie span is die gemeenskapsverpleegkundige besig met die voorkoming van geestesver­ traagdheid en die bevordering van normalisering deur stimulering van gemeenskapsbetrokkenheid en die bantering van individuele gevalle. Die oogmerk van gemeenskapsverpleegkunde is die daarstelling van ’n gelukkige en gesonde gesinsomgewing vir die geestesvertraagde in die gemeenskap en die rehabilitasie van geinstitusionaliseerde geestesvertraagdes in die gemeenskapslewe.

C om m unity care for the m entally retarded takes cognisance o f the many facets o f care required and available for the m entally retarded.
C om m unity care may be regarded as care provided by the general public for the m entally retarded in their midst as well as care provided by the professionals, p ar ticularly health and teaching professions, for the m en tally retarded in the com m unity.In order to facilitate the aforem entioned optim um care the nurse functions as a m em ber o f a m ultidisciplinary team , which includes a psychologist, psychiatrist, social w orker, occupational therapist, physiotherapist and teacher.
At times this team may include other professionals in the com m unity e.g.health visitor, general practitioner, outside social welfare agency, m inister o f religion, etc.
The m ultidisciplinary team approach is currently viewed as the only way o f providing all the requirem ents for the m entally retarded.Two influential reports point tow ards such an approach:- The aim o f the m ultidisciplinary team is to provide support in order that the m entally retarded and his family may live a full and happy life.
" A lbert Kushlick recognised that parents provide the best caring service for m entally retarded children" .®P arents can give the child love, bonding and socialisa tion experiences, especially teaching them the norm s and values o f society, which cannot be learnt in an in stitution.
This defines the com m unity n u rse's task furth er, into one which aims at keeping the m entally retard ed child in his hom e environm ent with as little tim e as possible spent in institutions.
Years o f institutionalisation and custodial care have left a legacy o f persons whom the nurse, today, m ust rehabilitate into fam ily life and the com m unity.
The daily discovery o f clients o f all ages, in the com m unity, w hose tra in in g an d e d u c a tio n have been neglected, is yet an o th er area in which the nurse is active in rehabilitation.

THE NURSE'S ROLE REGARDING THE PREVEN TION OF M ENTAL RETARDATION A N D PRO M OTING OF CARE FOR TH E M ENTALLY RETARDED BY THE COMM UNITY
1.As with all health problem s prevention is better than cure and the nurse m ust educate and guide the com m unity in this regard.
The authorities and the general public, particularly potential parents, need to be m ade aw are o f the m edical and psyco-social factors which can increase the incidence o f m ental reta rd atio n .Alcoholism in the m other and m alnutrition o f the infan t are but two high risk m edical conditions.
Social stress e.g.poor housing, insufficient incom e, m ay cause em otional problem s in the fam ily resulting in rejection, em otional deprivation and m ental and physical abuse, any o f which m ay con tribute to m ental retardation.

PROMOTION OF NORMALISATION
T he n u rse's task in this respect is directed tow ards the: (a) Acceptance by the Community o f the mentally retarded so that they may, within their poten tial, enjoy the rights accorded to others.The approach m ust be neither cold and clinical nor casual and unrealistic and the door m ust be kept open for further discussion, as parents are unable to accept and understand the full im plications im mediately.
Once the parents feel that they are not alone in the world to carry this heavy burden and that people w ith know ledge, em p ath y and w il lingness to help are at hand, they can begin to accept this child and the all im portant bonding with the m other is assured.
I f th e p a r e n t s ' to w a r d s th e m e n ta lly retarded child is a positive one, the siblings will ad opt this sam e attitude and generally the ex tended fam ily are able to do so too.
The com m unity beyond that o f the family is the next group requiring education and enlighten m ent in respect o f m ental retardation .The nurse has frequent opportunities, both in her professional and social life to dispel misconcep tions about m ental retardation, to make known their rights, their potentials and their abilities.
A cceptance by the general public is essential for facilitating norm alisation.Public rejection is so often a m ajor deterrent, preventing families from keeping their m entally retarded at home.Public acceptance gives the m entally retarded easier access to com m unity facilities, especially accom m odation and work.
The public can also be m otivated to provide funds for special facilities such as schools, recreation clubs, playgrounds etc.
T he provision o f opportunities for social con tact with norm al persons, both for the m entally retarded at hom e and in institutions can only be provided by the general public.
As social skills are the m ost im p o rtan t re quirem ents for norm alisation, the im portance o f family and com m unity involvem ent cannot be over em phasised.

(b) Mobilisation of the Community
The nurse m ust fam iliarise herself with the com m unity and m ake herself know n to them .
She must work with the com m unity, not fo r them , or they for her.A pleasant personality and appearance go a long way to " sell" mental retardation to the public.
The needs o f the m entally retarded and their families must be assessed.The type of assistance given will depend on w hat these in dividuals find the m ost acceptable and feasible.
Priority needs must be established, and short, medium and long term goals planned.
Resources in the com m unity need to be iden tified.These might be existing service clubs and organisations, student groups, parents o f retar dates etc.There m ight be existing facilities in the com m unity which can be used for the m en tally retarded or where the m entally retarded can participate in the activities o f norm al people e.g.coffee m ornings for the aged, horse riding schools, public swimming pools, seaside camps.
The support o f com m unity leaders, e.g.city councillors, school principals, clergymen, etc. can stim ulate projects aimed at norm alisation for the m entally retarded.
The nurse m ay find herself asked to be a m em ber o f a voluntary organisation th at wishes to work for the m entally retarded, e.g.D ow n's Syndrom e A ssociation.She may be invited to speak about m ental retardation with various groups e.g.church, service clubs, etc.
These are excellent opportunities to educate the public and stim ulate their taking responsibility for the needs o f the m entally retarded.
The nurse acts throughout as liaison officer, co ordinating the services o f the voluntary com m unity organisations and those o f the State.

THE COMMUNITY NURSE'S ACTIVITIES IN CO ORDINATION WITH THE MULTIDISCIPLINARY TEAM OF A CARE AND REHABILITATION CENTRE I. PREVENTION OF M ENTAL RETARDATION
A. H ealth and W elfare professionals in the com m unity need education regarding the prevention of m ental retardation.The part that they can play in alleviating social, economic and em o tional stress needs to be em phasised.This in cludes persons such as health visitors, paediatri cians, general practitioners and social workers.Many do not consider, or are not aw are, that even though they m ay not be able to deal with the problem s themselves, there are specific agen cies to whom they can refer their clients, e.g.psyciatric social w orkers, psychologists, mar- The nurse counsellor must at the o p p o rtu n e m o ment allow the family to discuss and help plan the child's future.P arents often feel that profes sionals m ake all the decisions and th at those are often unjustified.
P arents m ust be encouraged to discuss their own feelings.This m ental catharsis o f unburdening themselves is in itself beneficial.
An im portant support for parents is to have one agency to which they can turn at all times.The m ultidisciplinary team can offer this service.
The team can evluate the to tal child in the con text o f this family.The final opinion is a co ordinated one which can, if necessary, refer the client to an agency m ore suitable for dealing with a specific problem .
C. Professionals such as the fam ily physician, paediatrician, gynaecologist or m idw ife, due to their uncertainty and discom fort when delive ring a handicapped child, or m eeting one at a consultation, are inadvertently the cause o f a lifetime o f unresolved conflicts for the parents and a consequent loss o f oppo rtu n ity for n o r m alisation o f the child.
T oo often these professionals say " P u t the child aw ay" , because o f their own anxiety, w ithout giving a thought to the needs o f the child or his family.
It therefore rem ains for the nurse to interpret the concept o f norm alisation to o th er p racti tioners, so that adequate and effective service may be prom oted.(d) Prospective em ployers need to be can vassed in order to find suitable work for discharged residents.
(vii) For those rehabilitated residents, discharg ed and living in the com m unity, the nurse has the task o f looking after their health and welfare.This task is usually shared by the welfare agency responsible for a d m inistering the disability grants which they live on.
The com m unity nurse needs to wean them from institutional care to resources such as day hospitals and dental clinics and teach them how to spend their leisure time, by in troducing them to suitable social clubs and organisations.
M anagem ent o f their day to day affairs can be m onitored by the com m unity nurse, at an ap p ro p riate distance.Some m ay be liv ing together and m anaging the household by themselves.Assistance and supervision can be given regarding budgeting, planning and p reparation o f m eals, division o f labour, the settling o f interpersonal con flicts, physical health and their em ploy m ent.
F requently there is initial stress as a result o f the adjustm ent to this com m unity living.Psychosom atic illnesses and depression m ay m anifest themselves.Treated with care and understanding and assisted by m edication, when appropriate, these sym p tom s soon disappear, particularly as those discharged becom e m ore fam iliar with their new life, and their acquaintances and ac tivities becom e increasingly broader and broad er, m uch to their delight and increase in self-esteem.
A fter-care groups are an excellent o p p o r tunity for ex-residents to meet each other and the nurse.Problem s can be discussed in which they can learn from each other.
C onstructive criticism , counselling, en couragem ent and praise can be given, all of which are an essential part o f an after-care service.M ental retardation in the Republic of South A frica is emerging from the doldrum s.
T oday it is established as part o f psychiatry, and psychiatry is very much a part o f m ental retardation.As with psychiatry, treatm ent is a jo in t venture between the client and the health care team , requiring hard work from both.
The challenges, the opportunities, the stim ulation and the rewards are all waiting to be had by any nurse who pauses long enough to look at what m ental retardation care has to offer while for the m entally retarded, once they are regarded as " people with handicaps" , not " handicapped people" , there is the hope o f a happier future for them and their families.
Tasks o f the C om m unity N urse are:-• C o-ordination o f services for the m entally retarded • E ducation o f public and professionals • Assessm ent and planning • Counselling and support • Training and rehabilitation o f the m entally retarded for com m unity living • Placement in the community and supervision.
riage guidance counsellors, dietitian, genetic counsellors, rem edial teachers." It is clearly recognised that the m ajor problem s o f over three-quarters o f the retarded are psychosocial in kind and thus call for educa tional and other psychologically based preven tative m odalities" .(5)B. W here the nurse finds m ental retardation in a family, she is able to refer clients to genetic counsellors, so that the risks o f the m ental retar dation recurring may be assessed.This often alleviates m uch anxiety between m arried couples and those planning to m arry.C. M ental retard atio n may occur in children who grow up in an environm ent lacking stim ulation a n d /o r where there is m ental and physical abuse.Early intervention by m eans o f fam ily therapy and possible individual therapy, as well as a pro gram m e for stim ulation and education in the h o m e c a n be p la n n e d , im p le m e n te d a n d evaluated by the m ultidisciplinary team .D. W here physical defects that can be treated by m edication or diet are detected e.g.cretinism and phenylketonuria, the nurse can ensure that parents understand how to m aintain the trea t m ent and are aw are of the im portance o f keep ing strictly to the prescribed regime.II.PROMOTION OF NORMALISATION In the past the m entally retarded were often placed in centres where they received custodial care.Today m any o f these persons are institutionalised, their potentials have not been developed and they have consequently lost the right to a norm al life style.Their families have rem ained with feelings o f guilt, which have often been the cause o f their drifting away and losing contact.W here families have kept their m entally retarded m em ber at hom e, they have often had to endure p a in a n d f r u s t r a t io n in th e a b s e n c e o f know ledgeable and constructive consultants cater ing to the needs o f the entire family.A family centred approach by the com m unity nurse is therefore essential.She directs her tasks tow ards norm alisation, for both the family and the m entally retarded individual.Kay F. E nglehardt states that norm alisation for the nurse implies assisting persons to assum e respon sibilities for which they are com petent.This is often inhibited by the nurse's and other p ro fessionals' fear o f taking risks, particularly because o f professional liability.P ractitioners need to examine w hether their fears are ap p ro p riate as well as to exam ine the possible conflict between their role as helpers and their role as prom oters o f the client's independence.<6)A. The initial bonding o f the m other with the m en tally retarded new born and the fam ily's wil lingness to strive tow ards acceptance and accom m odation o f the child into their lives, is the first of m any hurdles which parents have to over com e during the progressive life stages o f the child and the family.B. The nurse m ust take cognisance o f the em otions o f guilt, unrealistic hope and anger tow ards p ro fessionals which the parents m ight h arb o u r.
(a) Fam ily involvem ent needs to be reac tivated by showing the fam ily w hat their help means.(b) Social training in areas outside the in stitution can be done by the nurse or voluntary w orkers can be organised to visit residents, take them on outings, show them places o f interest, take them shopping, acquaint them with public tran sp o rt and places o f entertainm ent, etc. H owever, it is extrem ely difficult to fin d v o lu n ta ry w o rk e rs w ho are prepared to com m it them selves to this kind o f work.(c)Landladies with w hom the residents m ay live, m ust be sought in the com m unity.