4.5 Resultados generales de la aplicación de la prueba: Pos-test grupo control
4.2.2 Resultados generales de la prueba: Pos-test grupo experimental
with dementia
( 4 - 1 ) I n t r o d u c t io n G i v e n th e p a u c ity o f p u b l is h e d d a ta on Q O L i n d e m e n t ia , a n d g i v e n t h e d e s i r a b i l it y o f e x p l o r i n g th e e x te n t to w h i c h th e p a tie n t with d e m e n t ia c a n r e p o r t on t h e ir o w n Q O L , it w a s d e c i d e d to d e v e l o p an “ i n d iv i d u a li s e d ” , p a ti e n t- d r i v e n te c h n iq u e . A n u m b e r o f “ i n d iv i d u a li s e d ” t e c h n i q u e s , w h i c h v a ry s o m e w h a t in th eir m e t h o d s a n d s c o rin g , h a v e b e e n d e s c r i b e d in C h a p t e r 2. T h e t e c h n i q u e w e c h o s e to d e v e l o p w a s the Q u a l it y o f L ife A s s e s s m e n t by C o n s t r u c t A n a l y s i s ( Q o L A S C A ) ( M c G u i r e , 1991; K e n d r i c k & T r im b l e , 1994; K e n d r ic k , 1993; K e n d r i c k , A, 1997). T h i s c h a p t e r o u t li n e s th e w a y s in w h i c h th is t e c h n i q u e w a s r e fin e d a n d tes te d in p a tie n ts w ith e p ile p sy . A f t e r p ilo t te s ti n g in p a tie n ts w ith d e m e n t ia , th e t e c h n i q u e w a s f u rth er re fin e d a n d s i m p li f i e d for th a t p a ti e n t g r o u p .( 4 - 2 ) F r o m Q o L A S C A to O O L A S : r e f i n e m e n t a n d s i m p l i f ic a t i o n o f t h e t e c h n i q u e
T h e initial d e v e l o p m e n t o f th e Q o L A S C A b a s e d o n R G T has b e e n d e s c r i b e d in c h a p t e r 2. S in ce v a r io u s a s p e c t s o f th e in te r v ie w a n d the s c o r i n g w e r e c o m p l e x , it w a s d e e m e d d e s i r a b l e to sim p li f y the t e c h n i q u e . T h e s i m p li f i c a t io n w a s d o n e in t w o stag es . T h e initial d e v e l o p m e n t o f th e s t r e a m l in e d m e t h o d w a s d o n e in p a tie n ts w ith e p il e p s y a n d th en this r e v is e d t e c h n i q u e w a s p i lo t e d in p a ti e n ts w ith d e m e n t ia . As a re su lt o f th is p ilo t w o r k , the m e t h o d w a s fu r th e r r e fi n e d f o r u se in p a ti e n ts w ith d e m e n t ia . T h e r e fin e d t e c h n i q u e h a s b e e n lab e lle d th e Q u a l it y o f Life A s s e s s m e n t S c h e d u l e ( Q O L A S ) .
(4-2-1) In it ial r e f i n e m e n t a n d s t r e a m l i n i n g : c o n s t r u c t e li c it a t i o n
In th e orig in a l Q o L A S C A , th e c o n s t r u c t s w e r e e lic ite d b y a fair ly c u m b e r s o m e t e c h n i q u e k n o w n as “ tr ia d ic p r e s e n t a ti o n ” . D u r i n g the in te rv iew , th e e l e m e n t s w e r e p r e s e n t e d in g r o u p s o f 3 ( tr ia d s ) a n d the p a tie n ts w e r e a sk e d : "th in k o f a w a y in w h ic h t w o o f t h e s e are a lik e a n d d i f f e r e n t f r o m th e th ir d in te r m s o f th eir q u a lity o f life". O n e o f the first st a g e s o f t h e s t r e a m l in i n g w a s to d i s p e n s e w ith this a n d to s i m p ly a sk p atients : “ 1 w o u l d like y o u to tell m e w h a t is i m p o r t a n t to y o u fo r y o u r q u a li t y o f life. In p a r tic u la r , w h a t are the w a y s in w h i c h h a v in g e p il e p s y h a s i n te r f e r e d w ith y o u r q u a li t y o f life” . A s m all stu d y w a s c o n d u c t e d w h e r e 50 p a tie n ts w ith e p i l e p s y w e r e a s k e d to s u p p l y c o n s t r u c t s in this m a n n e r . T h e resu lts w e r e c o m p a r e d w ith th e c o n s t r u c t s e lic ite d b y the o r ig in a l t e c h n i q u e ( K e n d r ic k , 1993). T h e re sults s h o w e d th at s i m ila r ite m s w e r e b e i n g elic ited , w ith th e m o s t f r e q u e n t ly m e n t i o n e d ite ms b e in g o ffere d b y s tr ik in g ly s i m il a r p e r c e n ta g e s o f r e s p o n d e n t s . T h e s e d a ta w e r e t a k e n as e v id e n c e t h at th e si m p le r c o n s t r u c t e lic itatio n m e t h o d c o u ld r e p la c e the m o r e c o m p l e x t e c h n i q u e . It is p e r h a p s n o t s u r p r i s i n g th at th e t w o m e t h o d s sh o u l d yield s i m il a r re s u lts in th e c o n te x t o f p a ti e n ts w ith c h r o n ic illness.
In all hi s d e f in itio n s , K e lly re ta in s the e s se n tia l n o t io n th at c o n s t r u c t s a re b i p o l a r ( F r a n s e l l a &
B a n n is te r , 1977 ). W e d o n o t a lw ay s, o r e v e n v e r y o ften , sp e c if y o u r c o n t r a s t p o l e b u t K e l l y ’s a r g u m e n t is t h a t w e m a k e s e n s e o u t o f o u r w o r l d b y s i m u l t a n e o u s l y n o t in g l ik e n e s s e s a n d d if f e r e n c e s . In the in te r v i e w s w ith p a tie n ts w ith e p ile p sy , th e i r n a r ra t iv e s w e r e p e p p e r e d w i t h c o m p a r i s o n s to “ th e o t h e r ” , th e p e r s o n w i t h o u t e p ile p s y , be it fr iend o r re la tiv e , o r th e p e r s o n th e y w o u l d like to b e c o m e w h e n (if) th e i r s e i z u r e s w e r e c o n tr o l l e d (d r u g s) o r r e m o v e d a lt o g e t h e r ( su rg e ry ).
A r t h u r K l e i n m a n m a k e s th e p o in t in his in flu e n tia l b o o k “ T h e Illn ess N a r r a t i v e s ” ( K l e i n m a n , 1 988) th at, to u n d e r s t a n d h o w s y m p t o m s a n d ill n e ss e s h a v e m e a n i n g .. .w e first m u s t u n d e r s t a n d n o r m a t i v e c o n c e p t i o n s o f the b o d y in re la tio n to the s e l f a n d w o r l d ” .
In d i s c u s s i n g th e i r h e a l t h - r e l a t e d Q O L , t h e s e c o n s t r u c t s a n d this w a y o f c o n s t r u i n g th e w o r l d w e r e a r ti c u l a te d by p a tie n ts w ith e p il e p s y w i t h o u t a c o m p l e x i n te r v ie w p r o c e d u r e . ( 4 - 2 - i i) Initial s t r e a m l i n i n g : E l e m e n t s A s d e s c r i b e d in C h a p t e r 2, in th e orig in a l Q o L A S C A , a total o f 10 " e le m e n t s " a n d th e n , f r o m th es e, a su b s e t o f 7 e l e m e n t s c o n s i d e r e d a p p r o p r i a t e to th e a s s e s s m e n t o f Q O L w e r e c h o s e n . W e e x p e r i m e n t e d w ith v a r io u s s u b s e t s o f e le m e n t s a n d e v e n t u a l l y c h o s e to re ta in o n l y t h e e l e m e n t s “ as y o u a re n o w ” ( N O W ) a n d “ as y o u w o u l d like to b e ” ( L I K E ) . T h e m e t h o d t h e r e f o r e r e t a i n e d o n e o f the o rig in a l t h e o r e ti c a l u n d e r p in n i n g s , i.e. th a t Q O L is a fu n c ti o n o f th e d i s c r e p a n c y b e t w e e n e x p e c t a t i o n a n d r eality , o f te n k n o w n in th e m e d i c a l literature as “ C a i m a n ’s G a p ” ( C a i m a n , 1984). ( 4 - 2 - iii) Initial s t r e a m l i n i n g : S c o r i n g T h e o r i g in a l tw o ty p e s o f s c o r i n g p r o c e d u r e s , b a s e d on in te r - e l e m e n t d i s t a n c e s w e r e c o m p l e x . A g a in , it w a s d e e m e d d e s i r a b l e to s t r e a m l in e this asp e ct. T h e s c o r i n g at th is s t a g e o f st r e a m l in i n g , a n d as u se d in the e p i l e p s y st u d i e s is as fo llo w s;
(1) F o r e a c h c o n s tr u c t, th e “ lik e” s c o re is s u b t r a c t e d f r o m the “ n o w ” , g i v i n g a s c o r e fo r th e d i s t a n c e