92 Fisio te ra p ie , D e se m b e r 1982, D eeI 38, Nr. 4. A STUDY TO INVESTI@ATE THE HELP AND EDUCATION REQUIRED BIT FAMILIES OF ELDERLY DISABLED PEOPLE C. D E N T O N * T h e a u t h o r set o u t t o i n v e s ti g a t e th e h e l p a n d e d u c a t i o n r e q u i r e d by f a m i li e s o f e l d e r l y d i s a b l e d p e o p l e , in o r d e r to p r o v i d e th e b es t p o s s i b l e c a r e f o r t h e i r e l d e r l y re lat iv es. F iv e fa m ili es w e r e us ed in th e s t u d y . T h e size o f t h e f am ily u n i t r a n g e d f r o m t h e n u c l e a r f a m i ly u n i t o f t w o m e m b e r s to e x t e n d e d fa m i li es o f n in e m e m b e r s . T h e el d e r l y d i s a b l e d p e o p l e were o f b o t h sexes o f all ra ci al g r o u p s a n d w e r e at l eas t 60 y e a r s o f age. T h e d i s a b il i t y r e n d e r e d th e p a t i e n t u n a b l e t o c a r r y o u t n o r m a l o r o r d i n a r y f u n c t i o n s . T h e a u t h o r m a d e five visits t o e a c h f a m i ly o v e r a p e r i o d o f f o u r m o n t h s . T h e f a m i ly w a s i n t e r v ie w e d d u r i n g t h e initial visit, to e n a b l e t h e a u t h o r t o u n d e r s t a n d as fully a s p o s s i b l e the f a m i l y ’s p r o b l e m s . T h e s u b s e q u e n t visits in v o l v e d the i m p l e m e n t a t i o n o f a n e d u c a t i o n p l a n , i n c l u d i n g p r a c t i c a l , e m o t i o n a l a n d e d u c a t i o n a l h el p . T h e s uc ce ss o f the p r o g r a m m e w as j u d g e d s u b j e c t iv e ly , b e i n g d e t e r m i n e d by t he p r e s e n t c o p i n g a b il it ie s o f t h e fa m i li es a n d t he n u m b e r o f p r o b l e m s w h i c h t h e y t h o u g h t still r e l e v a n t . R e s u l t s s h o w e d t h a t all t h e fa m ili es wer e still ex p e r i e n c i n g v a r i o u s p r o b l e m s , o f w h i c h th e f o l lo w in g w e r e c o m m o n to all five fa milies . M O B IL IT Y A N D IN D E P E N D E N C E T h e el d e r l y p e r s o n w as n o t a c h i e v i n g full f u n c t i o n a l ab i l i t y , le a v i n g t h e f a m i l y w it h a n u n n e c e s s a r y b u r d e n a n d t he el d e r l y p e r s o n wit h a f ee li ng o f i n a d e q u a c y . R e a s o n s for i m m o b i l i t y w e r e p o o r u n d e r s t a n d i n g by t h e f a m i ly or i ns u f f i ci en t i n f o r m a t i o n b y h e a l t h p r o f e s s i o n a l s o n the c a p a b i l i t i e s o f t h e el d e r l y p e r s o n . F A M IL Y ’S U N D E R S T A N D I N G O F T H E D IS A B IL IT Y T h e r e w a s a l i m i te d u n d e r s t a n d i n g o f t h e d i s a b il i t y , its p r o g n o s i s , l i m i t a t i o n s a n d effect o n th e p a t i e n t . T h i s w a s du e t o p o o r e x p l a n a t i o n b y h e a l t h p r o f e s s i o n a l s a t t h e t i m e o f d i s c h a r g e o r m i s u n d e r s t a n d i n g o n th e p a r t o f the fam ily . U N A C C E P T A N C E O F D IS A B IL IT Y T h e el d e r l y p e r s o n s w er e in v a r y i n g s t a g e s o f a c c e p t a n c e . T h e r e w a s a n e e d t o e n c o u r a g e a n d m o t i v a t e t he se p a t i e n t s . A n y i m p r o v e m e n t , n o m a t t e r h o w s m a ll , m u s t be e m p h a s i s e d . O n c e th e e l d e r l y p e r s o n h a s a c c e p t e d the d i s a b il i t y , h e is r e a d y t o m a k e full us e o f his abili ties. E m o t i o n s a n d fe eli ng s a s s o c i a t e d w i t h d i s a b il i t y h a v e t o be o v e r c o m e t o e n s u r e t h e s u c ce ss o f a r e h a b i l i ta t iv e p r o g r a m m e . t A b s t r a c t o f p r o j e c t c o m p l e t e d as c o u r s e r e q u i r e m e n t . * F i n a l y e a r B.Sc. ( P h y s i o t h e r a p y ) s t u d e n t a t U n i v e r s i t y o f C a p e T o w n . R e c e i v e d 7 S e p t e m b e r 1982. C O M M U N I C A T IO N T h e r e w as p o o r i n t e r a c t i o n b e t w e e n m e m b e r s o f each f a m i ly a n d in m o s t ca s es th i s w as d u e t o p o o r c o m m u n i c a t i o n . T h e f a m i ly o f t e n felt the e l d e r l y p e r s o n was b e i n g d i f fi cu lt a n d d e m a n d i n g , w h i l st the p a t i e n t w a s in fact a n x i o u s a n d f r u s t r a t e d . P H Y S I C A L H E A L T H . O F ‘C A R E R ’ T h e ‘c a r e r ’ w a s t h e f a m i l y m e m b e r w h o h a d a s s u m e d the m a i n r e s p o n s i b i l i t y f o r ca r e o f t h e p a t i e n t . In f o u r o u t o f fi v e f am i li es , th e ‘c a r e r ’s ’ h e a l t h w as n o t 10 0 % . t h u s lim itin g his o w n p h y s i c a l c a p a b i l i t i e s . T h is e m p h a s i s e s t h e n ee d f o r an a l t e r n a t e ‘c a r e r ’ e i t h e r in t h e f a m i ly o r t h e c o m m u n i t y . F IN A N C IA L It is o b v i o u s t h a t di sa b il i t y is n o t e c o n o m i c a l l y beneficial. All e c o n o m i c g r o u p s ar e a f fe c t e d . F o r t h e l o w e r in c o m e g r o u p s it is u s u a l ly a w a g e e a r n e r w h o fo rf ei t s h i s j d b in o r d e r to c a r e f o r t he e l d e r l y p e r s o n . In h i g h e r i n c o m e g r o u p s it was f o u n d t h a t f i n a n c i a l r e s o u r c e s w e r e p r e s e n t l y a d e q u a t e but. w it h i n f l a t i o n a n d h i g h m e d i c a l e x p e n s e s , th es e re so u rc es w o u l d be d w i n d l i n g . G r a n t s a n d o t h e r f i n a n c i a l a i d are a v a i l a b l e , b u t t h e fa m ili es h a d v e r y little k n o w l e d g e o f h ow to o b t a i n s u c h aid . • I N A D E Q U A T E K N O W L E D G E O F S E R V I C E S A V A IL A B L E S e r v i c e s f o r e l d e r l y d i s a b l e d p e o p l e in S o u t h A f ri c a are ver y l i m i te d . H o w e v e r , t h o s e a v a i l a b l e a r e n o t fully utilised. A s si st iv e de vi ce s, s u c h as w h e e l c h a i r s a n d c o m m o d e s , are ea si ly o b t a i n a b l e . / In c o n c l u s i o n , t h e p r o b l e m s a r i s i n g f r o m c a r i n g f o r an*' e l d e r l y d i s a b l e d p e r s o n at h o m e a r e v a r i e d , a n d affe ct every a s p e c t o f life. T h e s e n e e d s ca n b e v er y well m e t in t he h o m e s o f t h e p a t i e n t s by h e a l t h p r o f e s s i o n a l s . In t hi s s t u d y the a u t h o r d e a l t w i t h o n l y a sm a ll p e r c e n t a g e o f t h e p a t i e n t an d f a m i l y n e e d s b u t e v e n thi s h a d a p o s i t i v e effect o n t h e family. T h e p a t i e n t s b e g a n t o utilise t h e i r r e s i d u a l a b i l i t y , which r e s u l t e d in a n i n c r e a s e in i n d e p e n d e n c e . T h e f a m i ly h a d a b e t t e r u n d e r s t a n d i n g o f t h e d i s a b il i t y a n d t h e q u a l i t y o f ca re i m p r o v e d . T h e s uc ce ss o f th e p r o g r a m m e w a s d e t e r m i n e d by t he d e g r e e o f ac t i v e i n v o l v e m e n t b y th e f a m i ly , th e a m o u n t o f s u p p o r t a n d g u i d a n c e o f f e r e d by th e a u t h o r , t h e c o n t r i b u t i o n a n d i n t e r v e n t i o n b y o t h e r m e m b e r s o f t h e h e a l t h t e a m an d t h e a v a i l a b i l i t y o f fa cilitie s in t h e c o m m u n i t y . C o - o r d i n a t i o n b e t w e e n m e m b e r s o f th e h e a l t h t e a m is es se n t i a l ; e n a b l i n g t h e m t o c o m e t o g e t h e r a n d f o cu s o n th e i n d i v i d u a l p a t i e n t as a w h o l e in t e r m s o f his t o t a l e n v i r o n m e n t a n d t o t a l p r o b l e m . P e r s o n a l c o n t a c t w i t h t h e f a m i ly is o f i m m e n s e v al u e in p a t i e n t c a r e . W e , a s h e a l t h p r o f e s s i o n a l s , m u s t a i m t o keep p e o p l e o u t o f i n s t i t u t i o n s a n d in t h e i r o w n h o m e s , f u n c t i o n i n g at m a x i m u m i n d e p e n d e n c e a n d t h e r e b y k e ep in g f a m i li e s t o g e t h e r . 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. )