class 4_pediatrics_the emerging psycho social challenges_aids

8/14/2019 Class 4_Pediatrics_the Emerging Psycho Social Challenges_AIDS

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i n g o f c h i l d r e n h a s r e c e i v e d le s s a t t e n t i o n ( B e lf e r, K r e n e r , & M i ll e r,1 98 8) . W i t h t h e e x p a n d i n g a v a i l a b i l i t y o f a n t i r e t r o v i r a l a g e n t s tot r e a t t h i s d i s ea s e a n d t h e d e v e l o p m e n t o f p r o c e d u r e s to c o n t r o l s e-r i o u s s e c o n d a r y i n f e c ti o n s , c h i l d r e n a r e l i v i n g l o n g e r a n d t h e d i s e a s eh a s b e c o m e a m o r e c h r o n i c i ll n e s s. T h e c u m u l a t i v e lo s s e s a n d p s y c h o -l o g i c a l b u r d e n t h i s p l a c e s o n f a m i l i e s r e q u i r e s o u r i m m e d i a t e i n t e r -v e n t i o n ( B e l f e r , K r e n e r , & M i l l e r , 1 9 8 8 ) . E v e n a f t e r a c u r e i s f o u n d ,s o c i a l w o r k e r s w i l l b e i n a n e s s e n t i a l r o l e t o h e l p m i t i g a t e t h e c a t a -s t r o p h i c e f f e c t s t h i s d i s e a s e w i l l h a v e o n c h i l d r e n , f a m i l i e s a n d o u rs o c i e t y a s a w h o l e .U n l i k e v i r t u a l l y a n y o t h e r i l l n e s s a ff l ic t in g c h i ld r e n , t h i s i n f e c t i o nc h a l l e n g e s t h e i n t e g r i t y o f t h e f a m i ly u n i t . F a m i l y m e m b e r s s t r u g g l ew i t h t h e u n i q u e s o c ia l s t r e s s e s a s s o c i a te d w i t h t h i s d i s e a s e , i n c l u d i n gp u b li c f e a r a n d i g n o r a n c e r e g a r d in g t h e n a t u r e a n d t r a n s m i s s io n o fH I V , d i s c r i m i n a t i o n , i s o l a t i o n , s o c i a l o s t r a c i s m , s t i g m a , a n d f e a r o fp h y s i c a l a n d m e n t a l d i s ab i li ty . F u r t h e r m o r e , m a n y o f t h e s e f a m i li e sa r e e c o n o m i c a ll y v u l n e r a b l e a n d h a v e l i m i t e d a c ce ss to s u c h s e r v ic e sa s h o u s i n g , t r a n s p o r t a t i o n , a n d a d e q u a t e h e a l t h c a r e . O v e r 8 0 % o ff a m i l ie s o f H I V - i n f e c te d c h i ld r e n a r e f r o m m i n o r i t y b a c k g r o u n d s( R o g e r s e t a l ., 1 98 7 ). T h e m a j o r i t y o f f a m i l ie s h a v e a h i s t o r y o f d r u gd e p e n d e n c e or e x p o s u r e t o d r u g u s e r s a n d t h e r e is g e n e r a l l y m o r et h a n o n e m e m b e r i n t h e f a m i l y w h o i s e i t h e r i n fe c t ed or il l (U .S . P u b -lic H e a l t h R e p o r t , i n p r e s s ). I n a d d i t i o n , a ll t o o f r e q u e n t l y , f a m i l ie sl a c k t h e s u p p o r t o f t h e v e r y c o m m u n i t i e s t h a t t r a d i t io n a l l y h a v e r a l-l ie d a r o u n d t h e c a r e a n d s u p p o r t o f c h i l d r e n f a c in g l i fe - t h r e a t e n i n gi l lnesses (P izzo , 1990) .T h i s a r t i c l e i s d e s i g n e d t o b e a p r a c t i c a l d o c u m e n t u s e f u l to s o c i alw o r k e r s i n m a n y t y p e s o f s e t ti n g s . T h e i n f o r m a t i o n i s p r e s e n t e d i nt w o s e c t i o n s, b o t h o f w h i c h f o c u s o n t h e s o c ia l w o r k e r ' s r o l e i n h e l p i n gt h e H I V - a f f ii c te d fa m i l y . I n t h e f i r s t h a l f o f t h i s p a p e r , t h e d i r e c t a n di n d i r e c t p s y c h o l o g ic a l e x p r e s s i o n o f H I V o n c h i l d r e n w i l l b e o u t l in e d ,s o t h a t a s c l i n i c i a n s w e w i l l b e a b l e t o a s s e s s w h e t h e r c h a n g e s i n ac h i ld ' s b e h a v i o r i s a r e s u l t o f p s y c h o l o g i c a l s t r e s s o r t h e e f fe c ts o f t h ev i r u s o n t h e c e n t r a l n e r v o u s s y s t e m . I t h a s a l s o b e c o m e c l e ar t h a tc o m p r e h e n s i v e p s y ch o s o c ia l s u p p o r t is e s s e n t i a l i n o r d e r t o m e e t t h ec o m p l e x b i o p s y c h o s o c ia l n e e d s o f H I V - i n f e c te d c h i l d r e n a n d t h e i rf a m i li e s. S u c h a n a p p r o a c h w a s d e v e l o p e d o n t h e P e d i a t r i c B r a n c h o ft h e N a t i o n a l C a n c e r I n s t i t u t e a n d t h i s m o d e l , w h i c h u t il iz e s a c a s em a n a g e m e n t a n d m u l t id i sc ip l in a r y ap p r oa c h w i th a n e m p h a s i s o ne m p o w e r i n g f a m i l i e s w i ll b e d e s c r i b e d i n t h e s e c o n d s e c ti o n o f t h i sa r t i c l e .


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LORI WIENER ET AL. 383

T h e P s y c h o l o g i c a l E x p r e s s i o n o f H I V I n f e c t i o n a n d A I D SA v a r i e t y o f p s y c h o lo g i ca l c h a n g e s a n d b e h a v i o r a l r e a c t io n s h a v eb e e n n o t e d a m o n g H I V - i n f e c te d c h i l d r e n ( M o ss e t a l. , 1 98 9 , D a v i s e ta l. , 1 9 8 7 , B r o u w e r s e t a l ., 1 9 8 9 , W o l t e r s e t a l . , 1 9 8 9) . S o m e o f t h e s ep s y c h o lo g ic a l m a n i f e s t a t i o n s o f H I V h a v e b e e n i d e n ti f ie d t h r o u g hs y s t e m a t i c s tu d i e s w h e r e a s o t h e r s a r e b a s e d o n c li ni ca l a n d a n e c d o t a lo b s e r v at io n s . I m p a i r e d p s y c h o lo g ic a l t e s t p e r f o r m a n c e a m o n g H I V in -f e c te d c h i l d r e n h a s b e e n r e c o g n i z e d a s a s e n s i t i v e i n d i c a t o r o f t h ep r e s e n c e a n d s e v e r i t y o f t h e d i s e a s e , a n d , c o n v e r s e l y , r e v e r s a l o f d e -p r e s s e d p s y c h o m e t r ic t e s t s c or es h a v e b e e n u s e d a s e v i d e n c e o f t h ee f f ic a c y o f a n t i r e t r o v i r a l t r e a t m e n t ( P iz z o e t a l ., 1 9 8 8 ).T h e H I V i n f e c t io n m a y e f fe c t t h e p s y c h o l o g i c al f u n c t i o n i n g o f c h il -d r e n b o t h d i r e c t l y a n d i n d i r e c t l y . D i r e c t e f f e c t s i m p l y t h a t t h e r e i s an e u r o b io l o g ic a l b a s i s f o r a n y H I V r e l a t e d i m p a i r m e n t o f p s y ch o lo g i-c al b e h a v io r . E n c e p h a l o p a t h y is t h e d i a g n o s t ic t e r m m o s t f r e q u e n t l yu s e d t o c h a r a c t e r i z e t h e d i r e c t e ff e ct s o f t h e H I V i n f e c t io n o n t h e c e n -t r a l n e r v o u s s y s t e m . I n d i r e c t e f f e c t s r e f e r t o a t t i t u d e s , f e e l i n g s ,s t r e s s e s a n d d i s r u p t i o n s i n p s y c h o l o g i c a l f u n c t i o n i n g a s a p s y c h o l o g i-c a l r e a c t i o n t o t h e d i s e a se . T h e d e g r e e a n d f o r m o f b o t h t h e d i r e c t a n di n d i r e c t e f f e ct s o f t h e v i r u s o n p s y c h o l o g i c a l b e h a v i o r a r e o f t e n i n fl u -e n c e d b y t h e a g e o r t h e d e v e l o p m e n t a l le v e l o f t h e c h i ld . S o c ia lw o r k e r s , a l o n g w i t h p s y c h o l o g i st s w h o p e r f o r m p s y c h o m e t r ic te s t in g ,h a v e t h e o p p o r t u n i t y a n d a b i l i ty t o h e l p d if f e r e n t ia t e b e t w e e n t h ed i r e c t a n d i n d i r e c t e f fe c ts o f t h e d i s e a s e o n p s y c h o l o g ic a l a d a p t a t i o na n d i n t h e d e v e l o p m e n t o f a p p r o p r i a t e p s y c h ol o g ic a l i n t e r v e n t io n s .( S ee T a b l e 1 .) T h e f o l lo w i n g s u m m a r y w i l l h i g h l i g h t s o m e o f t h e c u r -r e n t f i n d in g s a n d i n f o r m a t i o n c o n c e r n i n g t h e r e l a t i o n b e t w e e n H I Vi n c h i l d r e n a n d t h e i r p s y c h o l o g i c a l b e h a v i o r .Direct EffectsU n d e r l y i n g t h e d i r e c t e f fe c ts o f t h e d i s e a s e o n p s y c h o l o g i c a l f u n c t i o n -i n g i s e v id e n c e t h a t t h e H I V v i r u s i s i n f e c t i n g a n d i m p a i r i n g t h e c e n -t r a l n e r v o u s s y s t e m ( B e l m a n e t a l . , 1 9 8 6 , E p s t e i n e t a l . , 1 9 8 7 ) . T h i se v i d e n c e c o n s is t s o f s t r u c t u r a l c h a n g e s i n t h e c e n t r a l n e r v o u s s y s t e m(C N S ) b a s e d o n f i n d i n g s f r o m n e u r o i m a g i n g p ro c e d u r es , th e p r e s e n c eo f a n t i g e n s a n d e l e v a t e d m a r k e r s o f H I V i n t h e c e r e b r a l s p i n a l f lu i d( C S F ) a n d a b n o r m a l m e t a b o l i c a c t i v i t y i n t h e b r a i n ( P i z z o e t a l . ,1 9 8 8 , B e l m a n e t a l ., 1 9 8 6 , E p s t e i n e t a l . , 1 98 7 ). T h e t y p e s o f b e h a v -i or s t h a t a p p e a r t o be d i r e c t ly i m p a i r e d b y t h e H I V i n f e ct io n o f t h eC N S a r e l a n g u a g e , s o c ia l a n d e m o t i o n a l r e s p o n s iv e n e s s , a r a n g e o f


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T A B L E 1D i r e c t a n d I n d i r e c t E f f e c t s o f H I V o n P s y c h o l o g i c a l

F u n c t i o n i n g

D i r e c t E f f e c t s

I n d i r e c t E f f e c ts

M e d i a t i n g B e h a v i o r a lE v e n t s O u t c o m e s

1) H I V r e l a t e d C N Sd i s e a s e 1 ) D e c l i n e i n c o g n i t i v ea b i l i t i e s2 ) F l a t a f f e c t3 ) L o s s o f e x p r e s s i v e

l a n g u a g e4 ) D e c r e a s e d i n t e r e s t i na c t i v i t i e s5 ) A g i t a t i o n

1) H I V r e l a t e d s t r e s s2 ) S o c i a l a l i e n a t i o n3 ) F a m i l yd i s o r g a n i z a t i o n4 ) C h r o n i c t e n s i o n5 ) P h y s i c a l d e b i l i t a t i o n

1 ) D i s t r a c t i b i l i t y2 ) P o o r s ch o o lp e r f o r m a n c e3 ) H y p e r a c t i v i t y t i c s4 ) D e p r e s s i o n5) S l e e p d i s t u r b a n c e6 ) B e h a v i o r r e g r e s s i o n

c o g n i t i v e s k i l l s r e f l e c t e d b y l o w e r e d I Q s c o r e s , a n d i m p a i r e d a t t e n -t io n , m e m o r y a n d v i s u a l m o t o r i n t e g r a t i o n a n d a l o ss o f g r o ss m o t o rf u n c t i o n i n g , p a r t i c u l a r l y i n v o l v i n g t h e l o w e r l i m b s . T h e e ff ec t o f t h eH I V o n f in e m o t o r s k i ll s is l es s c le a r . W i t h y o u n g e r c h i l d r e n , i n p a r -t i c u l a r, o n e s o m e t i m e s s ee s a r e g r e s s i o n o r lo s s of d e v e l o p m e n t a lm i l e s to n e s , su c h a s i n s p e e c h a n d w a l k i n g . I t is n o t u n c o m m o n t h e r e -f o re , f o r H I V - i n f e c t e d c h i l d r e n t o p r e s e n t , o r d e v e l o p , d i f f ic u l t y i n e x -p r e s s i v e l a n g u a g e a n d i n lo c o m o t i on .S o m e o f t h e s o ci al a n d e m o t i o n a l c h a n g e s t h a t h a v e b e e n o b s e r v e da s a d i r e c t e f fe c t o f t h e H I V a r e a s f o ll ow s . I n t e r a c t i o n s a n d c o m m u n i -c a t io n s w i t h o t h e r s b e c o m e m i n i m a l . T h i s i s o f te n o b se r v e d a s a na b r u p t c h a n g e f r o m p r e v i o u s b e h a v i o r . T h e c h i l d w i ll o f te n s t a re v a -c a n t l y a h e a d , n o t s m i l e , g a z e a v e r t, a n d a p p e a r t o b e w i t h d r a w n . R e -s p o n s i v e n e s s t o o v e r t u r e s f r o m o t h e r s i s g r e a t l y r e d u ce d . S o m e t i m e s


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a g i t a t e d b e h a v i o r , r e s t l e s s n e s s , a n d m o t o r i c i m p u l s i v i t y o c c u r s . I no n e e x t r e m e c a s e a n i n f a n t c r i e d w h e n h e l d an d q u i e t e d w h e n p u t i nt h e c r ib . M o t i v a t i o n a l b e h a v i o r a l s o a p p e a r s t o b e g r e a t l y a l t e r e d .C h i l d r e n a p p e a r t o lo s e i n t e r e s t i n ob j ec t s, e v e n t s a n d p e o p l e . T h e r e i sl i t tl e s u s t a i n e d , p u r p o s e f u l , g o a l d i r e c t e d b e h a v i o r . T a s k s a r e r e -s p o n d e d to i n a p e r f u n c t o r y , d e t a c h e d a n d d i s i n t e r e s t e d m a n n e r . F a -c ia l e x p r e s s i v e n e s s t e n d s t o b e in v a r i a n t a n d i m p a s s i v e . A s ig n i f i c a n tr e d u c t i o n i n sp e e c h a n d d i m i n i s h e d c o g n i t iv e f u n c t i o n i n g o f t e n a c -c o m p a n i e s t h e s e s o c i al a n d e m o t i o n a l c h a n g e s . W h a t i s d e s c r i b e dh e r e a r e s o m e o f t h e m o r e e x t r e m e b e h a v i o r a l m a n i f e s t a t io n s o f H I Ve n c e p h a l o p a t h y . H o w e v e r , al l g r a d a t i o n s o f t h e c l i ni c al s p e c t r u m ,f r o m s l ig h t t o s e v e r e , c a n b e o b s e r v e d . T h e m o v e m e n t t o w a r d e a r l i e ri n t e r v e n t i o n s i n t h e t r e a t m e n t o f t h e d i s e a se a n d t h e e m e r g i n g a v a il -a b i l i t y o f a l t e r n a t i v e t r e a t m e n t s s e e m t o be f a ct o rs t h a t m a y h a v er e d u c e d t h e i n c i d e n c e o f s o m e o f t h e m o r e s e v e r e c a s e s o f e n c e p h a -l o p a t h y . F u r t h e r m o r e , t h e u s e o f a n t i r e t r o v i r a l d r u g s , s u c h a s A Z Tc a n r e s u l t i n d r a m a t i c r e m i s s io n o f t h e s e s y m p t o m s . T h e f a c t t h a tC N S e v i d e n c e i s o f te n p r e s e n t a n d t h a t t h e s e s y m p t o m s h a v e b e e no b s e r v e d to b e r e s p o n s i v e t o d r u g t h e r a p y s u p p o r t s t h e s t r o n g l i k e li -h o o d t h a t t h e y a r e o f a n o r g a n i c o r i g i n ( P iz z o e t a l. , 1 9 88 ).

E x t r e m e e n c e p h a l o p a t h y , i n v o lv i n g t h e f u ll r a n g e o f b e h a v i o r a l d o-m a i n s , h a s b e e n o b s e r v e d m o r e f r e q u e n t l y a m o n g i n f a n t s a n d y o u n gc h i ld r e n . I n o n e s t u d y , o b s e r v e r s u s i n g a b e h a v i o r a l r a t i n g p r o c e d u r et e n d e d t o d e sc r ib e e n c e p h a l o p a t h ic y o u n g e r c h i l d re n a s e x h i b i t i n g a u -t i s t i c -l i k e s y m p t o m s a n d e n c e p h a l o p a t h i c o l d e r c h i l d r e n a s a p p e a r i n gt o b e d e p r e s s e d ( M o s s e t a l. , 1 9 8 9 ). T h i s c l i n i c a l p i c t u r e i s i m p o r t a n tf o r s o c ia l w o r k e r s t o b e a w a r e o f i n t e r m s o f i d e n t i f y i n g e n c e p h a -l o p at h ic c h a n g e s a n d / or d i f fe r e n t i a t i n g b e t w e e n e n c e p h a l o p a t h y a n dc l in i c al d e p r e s s io n . T h e f o l lo w i n g v i g n e t t e s w i ll f u r t h e r i l l u s t r a t e t h i sp o i n t :EncephalopathyA twelv e ye ar o ld boy p resen ted as apa the t i c . He exh ib i t ed no a ff ec t,had a "g lazed" expres s ion , s t a red ahead , exh ib i t ed d imin i shed speecha n d w a s m i n i m a l l y r e s p o n s i v e to o th e r s. T h i s w a s i n m a r k e d c o n t r a s t t oh i s beha v io r a t a ny o the r t ime in h i s li fe . He r ecovered f rom th i s " s eem-ing ly depres sed" behav io r a f t e r a cour se o f r e t rov i r a l t h e r a p y . T h a t i s ,

he became soc iab le , exh ib i t ed pos i t ive a f f ec t and was ve rba l , a t t en t iveand r espons ive to o the rs .DepressionA n e i g h t y e a r o l d g i rl e x h i b i t e d b e h a v i o r a l r e g r e s si o n a n d w i t h d r a w a la t the t ime her mother became se r ious ly i l l ( f rom HIV) and d ied . Infac t , a hea r ing t e s t was o rdered as she d id no t a lways r espond when


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3 86 C H IL D A N D A D O L E S C E N T SO C I A L W O R K J O U R N A L

peop le we re t a lk ing to he r. Sh e i s an ex t reme ly b r igh t ch i ld and hadbeen v e ry coope ra t ive . She s ta r ted to show re s i stance , t e s t ing o f l im i t sand d epre s s ive con ten t in he r d rawin g o f a "g irl ". She f i r s t d rew the g i r lw i th f lowers and th e sun , and then s ta ted "he re comes the c louds" andd r e w r a i n d r o p s t h a t s h e s ta t e d w e r e te a r s . E v e n t h o u g h s h e a p p e a r e dt o b e e m o t i o n a ll y s h a k e n , w i t h m u c h s u p p o r t s h e re m a i n e d a c ce s si b leand re spons ive to s ta f f ( a s de sc r ibed by psycho log is t , Pa re Wol te rs ) .

C o g n i t i v e d e f ic i ts , b a s e d o n I Q s c o r e s, a p p e a r t o b e o n e o f t h e m o r es e n s i t i v e a n d w e l l d o c u m e n t e d p s y c h o l o g i c a l i n d i c a t o rs o f H I V e n -c e p h a l o p a t h y . T h e d e g r e e o f c o g n i t iv e i m p a i r m e n t i s p r o b a b l y co m -m e n s u r a t e w i t h t h e s e v e r i t y o f t h e C N S i n fe c ti o n w i t h t h e v i ru s . I Qs c o r es t h a t a r e m o r e t h a n 1 0 p o i n t s b e l o w t h e c h i l d ' s e x p e c t e d IQ a r eu s u a l l y n e e d e d t o b e c o n f i d e n t t h a t t h e l o s s i n I Q p o i n t s p r o b a b l ye x c e e d s n o r m a l t e s t - r e t e s t v a r i a t i o n . H o w e v e r , s o m e c h i l d r e n m a ys h o w a d r o p o f 2 5 o r m o r e I Q p o i n t s a s a r e s u l t o f C N S c o m p r o m i s ef r o m t h e v i r u s . I n o r d e r t o d e t e r m i n e w h e t h e r a ch i ld 's I Q h a s a l r e a d yd e c l i n e d w h e n f i r s t s e e n i t i s n e c e s s a r y t o e s t i m a t e t h e p r e - i l l n e s ss co r es f ro m i n f o r m a t i o n o n f a m i l y a n d e n v i r o n m e n t a l b a c k g r o u n df a c t o r s, o r i f a v a i l a b l e f r o m s c o r e s o b t a i n e d p r i o r t o t h e H I V i n f ec t io n .I Q d e c l i n e s a s s o c i a t e d w i t h t h e v i r u s a r e o f t e n m o r e p r e c i p i t o u s a n ds t e e p e r a m o n g i n f a n t s a n d y o u n g c h i l d r en . I t i s n o t c l e a r i f t h i ss t e e p e r lo s s i n I Q a m o n g t h e s e y o u n g e r p a t i e n t s h a s t o d o w i t h i n-c r e a s e d v u l n e r a b i l i t y o r b e c a u s e t h e y w e r e i n f e c te d a t a m o r e c r i t ic a ld e v e l o p m e n t a l s t a g e o f c o g n i t i v e g r o w t h .

A l t h o u g h t h e H I V i n fe c ti o n o f t h e C N S u s u a l l y a p p e a r s t o b e a ss o-c i a t e d w i t h d e c l i n e s in I Q t h i s i s n o t a l w a y s t h e c a se . O c c a s i o n a ll yc h i l d r e n w i t h C N S r e l a t e d H I V i n f e c t io n w i l l e x h i b i t a b e r r a n t b e h a v -i o r w h i l e t h e i r i n t e l le c t a p p e a r s t o r e m a i n i n t a c t a s t h e f o l lo w i n g c a s ed e s c r i b e s .

A n e l e v e n y e a r o l d b o y h a d b e e n f u n c ti o n i n g w i t h in t h e a v e r a g e i n t el -l e c tu a l r a n g e a n d h a d b e e n b e h a v i n g n o r m a ll y . R a t h e r a b r u p t l y , h es t a r t e d t o e x h i b i t a t y p i c a l a n d s o m e w h a t b i za r re b e h a v i o r . H e b e c a m eag i ta ted , ex t reme ly re s t l e s s , exh ib i ted r ap id and f r ene t ic speech andcompuls ive behav io r (p ick ing h i s sk in , p ick ing up and f idge t ing wi thob jec ts ) and had d i f f icu l ty concen t ra ting . Tes t s adm in is te red a t th i st ime show ed tha t h i s in te l l e c tua l ab i l i t ie s r ema ined un changed . The rewas "s ign i f ic an t" inc rea se o f HIV in h i s C NS a t th i s t ime and he d iedsoon a f te r .C o n v e r s e l y , s i g n i f i c a n t l o s se s i n c o g n i t i v e f u n c t i o n i n g c a n o c c u r i nt h e a b s e n c e o f s e r i o u s a l t e r a t i o n s i n s o ci al a n d e m o t i o n a l b e h a v i o r .


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L O R I W I E N E R E T A L . 3 8 7

I n d i r e c t E f f e c tsIndirect psychological effects from HIV refers to the fears, anxietiesand emotional and behavioral reactions to living and coping with themyriad of stresses associated with having AIDS. The stresses th at areexperienced vary somewhat as a function of the age of the child, theavailable support systems, the child's adaptive resources and specificlife circumstances, such as how many other family members may alsobe HIV infected.Most school age children are aware that they have AIDS and thatthis is a fatal disease. Living with a life threatening disease, witness-ing the loss of other HIV-infected children they have come to knowwell is an enormous burden to bear, particularly at this young age.Many of the younger children are anxious about death because theyperceive this as an event that separates them from family, friends,and loved ones. This separation anxiety may be ameliorated for somechildren by a family belief system that includes a belief in an afterlife in which one is reunited with others.

A phobic attitude exists in many communities concerning AIDS.Children can be ostracized, rejected and humiliated if their illnessbecomes publicly known. Certainly some school systems have pre-vented these children from participating in regular school activities.These circumstances often result in a sense of shame and feelings ofbeing a pariah. Some communities are more enlightened and respondmore positively to these children. However, when this is not the casethe stress can be severe. In order to avoid the potential humiliation,disgrace and persection over being exposed, children with AIDS aresometimes further burdened with carrying this as a "terrible secret"which often results in withdrawal from friends and age appropriateactivities.

The protracted and often invasive medical treatments they have toundergo and the constant threat of serious opportunistic and debil-itating diseases (in some instances blindness) is another monumentalstress heaped on these children. Many of these children exhibit de-layed growth. The resultant disparity in height from thei r peers is anadditional basis for potential anguish as well as a constant reminderthat they are different from their peers. Some forms of stress derivefrom the child's personality and the way he or she construes events.We have heard some children express guilt for the pain and disap-pointment they have inflicted on their parents by being ill. Other


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388 CHILD AND ADOLE SCENT SOCIAL WORK JOUR NAL

c h i l d r e n h a v e s u c h a s t r o n g n e e d t o p r o t e c t t h e i r p a r e n t s f r o m f u r t h e rh u r t a n d s u f fe r in g t h a t t h e y d o n o t te l l t h e m w h e n t h e y a r e f r ig h t-e n e d ( e s p e c ia l ly o f d y i n g ) o r i n p h y s i c a l p a i n .V e r t i c a l ly i n f e c te d c h i l d r e n h a v e e x t r a o r d i n a r y a d d i t io n a l p r o b-l e m s t o c o pe w i t h s in c e t h e i r m o t h e r s , a n d p o s s ib l y o t h e r f a m i ly m e m -b e r s, a r e a l s o in f ec te d . T h i s s i t u a t i o n m e a n s t h a t p a r e n t s m a y b e c o m es o c o m p r o m i s e d b y t h e d i s e a s e t h a t p a r e n t i n g s k i ll s a r e i m p a i r e d a n du l t i m a t e l y t h e y m a y d ie . I n a d d i t io n , t h e m a j o r i t y o f c h i l d r e n b o r n t oH I V p o s i ti v e m o t h e r s l iv e i n s i n g l e p a r e n t f a m i li e s a n d a r e e x p e ri en c -i n g p o v e r t y , d e p r i v a t i o n a n d s o c ia l is o l a ti o n .T h e a b i l i ty o f t h e s e c h i l d r e n t o c o p e w i t h t h e f o r m i d i b l e s e t o fs t re s s e s a n d c h a l l e n g e s t h a t f ac e t h e m is a f u n c t i o n o f t h e i r a d a p t i v ec a p a c it ie s , e g o s t r e n g t h , f a m i l y a n d c o m m u n i t y s u p p o r t s y s t em s , a n dt h e h e a l t h c a r e r e s o u r c e s a v a il a b l e to t h e m . H o w e v e r, th e c h i l d r e n a sa g r o u p s h o w r e m a r k a b l e r e si li en c e . O u t w a r d l y , m o s t o f t h e m c a r r yo n w i t h t h e i r d a i ly l i v e s in a n o r d i n a r y f a sh i o n . W h e n w e l l, t h e y a t-t e n d s ch o ol, p l a y w i t h f r ie n d s , e n jo y g a m e s a n d p u r s u e h o b b i e s a n da c t iv i t i e s t h a t a r e a p p r o p r i a t e f o r t h e i r a g e g r o up . T h o s e t h a t a r e n o te n c e p h a l o p a t h i c e x h i b i t t h e s p o n t a n e i t y , a f fe ct , a n d i n t e r p e r s o n a l b e -h a v i o r t h a t o n e w o u l d a n t i c i p a t e f r o m a n o n - i n f e c te d g r o u p o f c h il-d r e n . T h i s d o es n o t m e a n t h a t t h e y a r e n o t h u r t i n g , s t r u g g l i n g a n ds e a r c h i n g f o r a n s w e r s i n w a r d l y . B u t t h e y b r a v e l y s e e m t o b e c o p i n ga n d g e t t i n g o n w i t h t h e i r l iv e s.E v i d e n c e o f t h e s t re s s a n d t e n s i o n H I V - i n fe c t ed c h i ld r e n u n d e r g om a y b e e x p r e s s e d in d i r ec t ly . A m o d e r a t e n u m b e r o f t h e s e c h i l d r e ne x h i b i t l e v e ls o f h y p e r a c t i v i t y a n d a t t e n t i o n a l d e f i c it s t h a t a r e s u ff i-c i e n t to i n t e r f e r e w i t h s c h o o l p e r f o r m a n c e . A l t h o u g h i t is p r o b a b l et h a t t h e i n c id e n c e o f t h e s e b e h a v i o r s e x c e ed s t h e b a s e r a t e s f or t h e s ep r o b l e m s i n t h e g e n e r a l p o p u l a t io n n o t e n o u g h d a t a is a v a i la b l e t om a k e a c o n c l u si v e s t a t e m e n t i n t h is r e s p ec t. A t t e n t io n a l p r o b l e m s ,h y p e r a c t i v i t y a n d o t h e r u n m o d u l a t e d m o t o r a c ts , s u c h a s ti cs m a ye a s il y b e t h e e x p r e s s i o n o f t h e c h r o ni c , u n r e m i t t i n g t e n s i o n t h a t t h e s ec h i l d r e n a r e e x p e r i e n c i n g , e s p e c i a l l y w h e n t h e y n e e d t o l i e t o o t h e r sa b o u t t h e i r d i s ea s e a n d m e d i c a ti o n s . A ls o, s o m e o f t h e c h i l d r e n e x -h i b i t p e r i o d s o f s a d n e s s a n d a p p a r e n t d e p r e s s io n . T h e s e c h i l d r e n e x-h i b i t e x a g g e r a t i o n s o f t h e u n d e r l y i n g b e h a v i o r a l te n d e n c i e s to e i t h e re x t e r n a l i z e o r i n t e r n a l i z e f e e l i n g s i n r e a c t i o n t o t h e c o n t i n u o u s s t r e s sw i t h w h i c h t h e y a r e c o n f r o n t e d . A s s o c ia l w o r k e r s , w e n e e d t o b e s e n -s i ti v e to i n d i v i d u a l d e v e l o p m e n t a l , f a m i l y , a n d s o c ia l n e e d s a n d c r e -a t i v e i n o u r a p p r o a c h t o e a c h c h i l d 's c a r e a s t h e f o l l o w i n g v i g n e t t ei l l u s t r a t e s :


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David, a 14 ye ar old HIV-infec ted hemo phi l iac , w as re fe rred for psycho-soc ia l eva lua t ion a f te r deve loping a t i c . Upon explora t ion i t becamec lea r to t he w orke r t h a t t he t i c began soon a f t e r h i s m edica ti on sched-ule w as revised. A s a resul t o f th i s revis ion, Dav id needed to hide in theba throom a t school in order to t ake hi s AZT. This behavior was in ex-t reme con t rad i c t i on t o t he way he was ra i sed which was t o be hones t ,open and above a l l neve r t o dece ive o the r s o r l ie . By s imply changingthe medica t ion schedule so tha t he did not have to take pi l l s a t school ,the t i c d i sappeared. (Weiner , 1991)I n g e n e r a l t h e b e h a v i o r a l p r o b l e m s t h a t a r e o b s e r v e d a r e n o t ex -

t r e m e o r i n c a p a c i t a t i n g . F u r t h e r m o r e , t h e y a r e q u a l i t a t i v e l y v e r y d if -f e r e n t fr o m t h e b e h a v i o r s t h a t a r e a s s o c i a te d w i t h e n c e p h a l o p a t h y .T h a t i s, t h e s e c h i l d r e n a r e s t i l l v e r y r e s p o n s i v e a n d a l e r t , a r e i n-v e s t e d i n a c t i v i t ie s a n d i n p e o p l e , a r e o f t e n h i g h l y a r t i c u l a t e , a n ds e e m t o b e s e a r c h i n g f or n o r m a l c y , a n d e n d t o t h i s d i s e a s e a n d s u p -p o r t . S o c ia l w o r k e r s a r e u n i q u e l y q u a l i f ie d t o a s s e s s e a c h c h i ld a n df a m i l y ' s n e e d s , a n t i c i p a t e p s y c h o l o g i c a l a d j u s t m e n t a n d p r o v i d e i n te r -v e n t i o n s t h a t w i l l h e l p c h i l d r e n a n d f a m i l i e s d e v e l o p p o s i t i v e c o p i n gs t r a t e g i e s t o d e a l w i t h H I V - r e l a t e d d i s t r e s s a n d a s s o c i a t e d d y s f u n c -t i o n in t h e h o m e , i n i n t e r p e r s o n a l r e l a t io n s h i p s , a t sc h o o l, a n d i n t h ec o m m u n i t y . M e n t a l h e a l t h s e r v ic e s , w h e n i n t e g r a t e d i n to a c o m p r e -h e n s i v e s y s t e m o f c a r e f or c h i ld r e n w i t h H I V i n fe c ti o n a n d t h e i r f a m i -l i es , e n h a n c e t r e a t m e n t , h e l p e n s u r e c o n t i n u i t y o f c a re , a n d f o s t e ra c c e p t a n c e o f c h i l d r e n w i t h H I V i n f e c t io n a n d t h e i r f a m i li e s . T h e s ea r e t h e g o a l s o f t h e p s y c h o s o c ia l s u p p o r t p r o g r a m a t t h e N a t i o n a lC a n c e r I n s t i t u t e .

T h e N C I P s y c h o s o c i a l S u p p o r t M o d e lI n D e c e m b e r o f 1 9 86 , t h e P e d i a t r i c B r a n c h o f t h e N a t i o n a l C a n c e rI n s t i t u t e b e g a n t r e a t i n g H I V - i n f e c te d ch i ld r e n . S i n c e t h i s t i m e w eh a v e w o r k e d w i t h o v e r 3 0 0 c h i ld r e n a n d t h e i r f a m i l i es . W e w e r e c o n -f r o n t e d e a r l y o n w i t h s o m e o f t h e s i m i l a r it i e s b u t a l s o t h e t r e m e n d o u sd i f fe r e n c es b e t w e e n p r o v i d i n g p s y c h o s o c ia l s u p p o r t t o t h e f a m i l y o f ac h i ld w i t h c a n c e r a n d t o t h e f a m i l y o f a c h il d w i t h A I D S . L i k e c a n c e r ,A I D S w i l l d i s r u p t t h e e q u i l i b r i u m o f a f fe c te d fa m i l ie s . H o w e v e r , u n -l i k e c a n c e r , i n m o s t H I V - i n f e c t e d f a m i l i e s t h e r e i s f r e q u e n t l y at e n o u s e q u i l i b r i u m t o b e g i n w i t h a n d t h e r e i s g e n e r a l l y m o r e t h a no n e f a m i l y m e m b e r w h o i s i n f e c t e d o r i l l . I n a d d i t i o n , m o s t H I V - i n -f e c te d f a m i l i e s a re a l r e a d y b u r d e n e d w i t h p o v e r t y , d i s c r i m i n a t io n a n dp o o r s u p p o r t s y s t e m s a n d a r e a l r e a d y k n o w n t o m u l t i p l e s o c i a l s e r v -


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390 CHILDAND ADOLESCENT SOCIAL WORK JOURNAL

T A B L E 2P s y c h o s o c i a l S u p p o r t P r o g r a m

9 E a r l y I n t e r v e n t i o n P r o g r a m9 P s y c h o s o c i a l A s s e s s m e n t9 M e n t a l H e a l t h S e r v i c e s

- A t t im e o f e n t r y t o p r o g r a m- T h r o u g h o u t c o u rs e o f i n fe c t i o n- T e r m i n a l I lln e ss- B e r e a v e m e n t

9 P s y c h o t h e r a p e u t i c M o d a l i t i e s- I n d i v i d u a l- C o u p l e- F a m i l y- G r o u p ( In - h ou s e a n d T e le p h o n e)

9 A d v o c a c y S e r v i c e s & I n t e r a g e n c y L i n k a g e s9 C a s e M a n a g e m e n t A p p r o a c h9 E m p o w e r m e n t

- N a t i o n a l T e le p h o n e N e t w o r k- V o l u n t e e r I n -H o u s e P r o g ra m- H o s t V o l u n t e e r P r o g r a m- C h i l d r e n ' s I n n

ic e a g e n c i e s w h e n c o n f r o n t e d w i t h A I D S . I n r e s p o n s e , a P e d i a t r i c H I VP s y c h o s o c ia l I n t e r v e n t i o n P r o g r a m h a s b e e n d e v e l o p e d ( W i e ne r ,1 9 89 ) (s e e T a b l e 2 ) a n d h a s b e e n i n t e r w o v e n i n t o t h e e x i s t i n g s e r v i c esp r o v i d e d w i t h i n t h e P e d i a t r ic B r a n c h o f t h e N a t i o n a l C a n c e r I n s ti -t u t e . T h e a i m o f t h e p r o g r a m is t o b e c h i ld c e n t e re d , f a m i l y fo c u se da n d c o m p r e h e n s i v e i n n a t u r e . I t h a s t h e a d d e d g o al o f e m p o w e r i n gf a m i l ie s a n d h a s b e e n d e v e l o p e d a n d r e v i s e d b a s e d o n t h e p e r c e i v e da n d i d e n t if i e d n e e d s o f t h e f a m i l ie s t h e m s e l v e s .

Early Intervention ProgramO n c e t h e c h i ld h a s b e e n a c c e p te d f or s c r e e n in g a n d e v a l u a t i o n , th ea s s i g n e d s o c ia l w o r k e r c o n t a c ts t h e f a m i l y b y t e le p h o n e . T h e p u r p o s eo f t h i s c a ll is to a s s i s t t h e f a m i l y in m a k i n g n e c e s s a r y a r r a n g e m e n t sf o r t r a v e l t o t h e m e d i c a l c e n t e r , f o r l o ca l h o u s i n g , to o b t a i n a p r e l i m i -


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nary psychosocial assessment and to assess additional areas of need.For example, many families experience severe stress at the thought ofbeing far from home, fearful that their child will not return homealive, and uncertain whether they are making the right decision inparticipating in a clinical trial. Public assistance may be able to as-sist others with the cost of the initial visit, a local AIDS organizationmay be able to provide a "buddy" to watch the other children whilethe parent takes the child for weekly blood tests, and free legal inter-vention may be needed to establish guardianship if the child's parentsare unable or unavailable to provide proper care. Therefore, with afamily's permission, contact is also made with agencies and socialworkers who have been of assistance to the family in the ir home com-munity. A packet of information is the n sent to the family which in-cludes information about our branch, the virus, various treatments,and also includes a coloring book which illustrates all medical pro-cedures that will take place during the child's evaluation. Phone con-tact is maintained prior to the family's arrival.This early intervent ion model is orchestrated by the social workerand provides the framework for a case management approach to care.It establishes a supportive relationship with families on which tobuild a long-term partnership between medical and psychosocial careproviders within the home communi ty and our medical facility.The social worker is also the first person to meet the family uponarrival. Orientation to the hospital by the same person with whomthe family has been in contact reduces anxiety, engages the family inthe hospital system, and initiates the process of continuous and con-sistent care. The family is then prepared for the screening processwhich determines eligibility for a par ticular protocol and provides fora more in depth psychosocial assessment. (See Table 3) This assess-ment is an essentia] ingredient of the program as it helps staff antici-pate psychosocia] adjustment and plan for the family's immediate andlong term needs.Mental Health InterventionsAs addressed earlier, children with HIV infection often experience arange of behavioral and psychosocial problems. Since mother andchild are often separated, commonly by hospitalization, social workersshould be alert for infantile or early depression. Some children, par-ticularly younger ones may exhibit disruptive and inappropriate be-haviors, learning difficulties, and even symptoms that simulateautism. Young children are most worried about medical tests and pro-


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T A B L E 3P s y c h o s o c ia l A s s e ss m e n t

F a m i l y C o n s t e l l a t i o nB i o l o g i c a l a s w e l l a s a d o p t i v e / f o s t e r / e x t e n d e d f a m i l y m e m b e r s :H i s t o r y o f I l l n e s sR o u t e o f t r a n s m i s s i o n , h i s t o r y o f s y m p t o m sC h i l d ' s P e r s o n a l i t y P r o f i l e

P r e i l l n e s s9 R e l a t i o n s h i p w i t h p a r e n t s , s i b li n g s , p e e r s9 F u n c t i o n i n g i n s c ho o l a n d p l a y9 C o p i n g a b i l i t i e s9 E x i s t i n g s t a n d a r d i z e d t e s t i n f o r m a t i o n9 P r i o r l o s s e s

C u r r e n t9 K n o w l e d g e a n d r e a c t i o n t o d i a g n o s is9 W o r d s u s e d t o d e s c r i b e i n f e c t io n9 B e l i e fs , a t t i t u d e s , e x p e c t a t i o n s9 C o p i n g a b i l i t i e s9 A b i l i t y t o d e a l w i t h s e p a r a t i o n9 E n e r g y l e v el , m o o d9 B e h a v i o r a l c h a n g e s a t h o m e , s c h o o l, p l a y9 W h e t h e r c h i l d h a s t o ld a n y f r ie n d s9 S c h o o l 's u n d e r s t a n d i n g o f c h i ld 's s i t u a t i o nF a m i ly H i s t o ry9 F a m i l y ' s b e l i e f s, a t t i t u d e s , e x p e c t a t i o n s r e g a r d i n g i ll n e ss ,

t r e a t m e n t , d e a t h .9 W h o i n t h e f a m i l y i s a w a r e o f d i a g n o s i s?9 R e a c t i o n s o f f a m i l y m e m b e r s / f r ie n d s / n e i g h b o r s .9 Q u a l i t y o f r e l a t io n s h i p s w i t h e x t e n d e d f a m i l y m e m b e r s .9 C o p i n g a b i l i ti e s d u r i n g p r e v i o u s c r is e s.9 H i s t o r y o f d e p r e s s i o n a n d / o r n o n p r e s c r i b e d d r u g a n d a l co h o lu s e .

9 H i s t o r y o f p r e v i o u s l o ss e s.9 N a t u r e a n d s t a b i l i ty o f r e s id e n t i a l/ o c c u p a t io n a l a r r a n g e m e n t s .9 S o u r c e s o f e m o t i o n a l a n d f i n a n c ia l s u p p o r t; a v a i l a b i l i t y o f

m e d i c a l i n s u r a n c e .9 C u l t u r a l / r e l i g i o u s b e l ie f s .9 H e a l t h s t a t u s o f a l l f a m i l y m e m b e r s .C o m m u n i t y S u p p o r t9 I n v o l v ed c o m m u n i t y a g e n c i e s9 S o c ia l w o r k i n v o l v e m e n t


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c e d u r e s . S c h o o l -a g e c h i l d r e n a n d a d o l e s c e n t s m a y f e e l i s o l a te d a n d a tt i m e s e x p e r i e n c e d e p r e s s i o n a n d r e l a t e d d i s o r d e r s . M e n t a l h e a l t hs e r v i c e s c a n b e a s i g n i f i c a n t r e s o u r c e t o c h i l d r e n w i t h H I V i n f e c t i o na n d t h e i r f a m i l i e s . T h e s e s e r v i c e s c a n t a k e o n m a n y f o r m s ( i n d i v i d -u a l , c o u p l e , o r f a m i l y c o u n s e l i n g ) , a n d o f t e n c o m p l i m e n t o n e a n o t h e r .F o r e x a m p l e , a c o u p le w h o i s n e w l y d i a g n o s e d m a y n e e d a s s i s t a n c e i nc o n f r o n t i n g p o w e r f u l is s u e s s u c h a s d r u g u s e , p r o m i s c u i t y , b i se x -u a l i t y , o r i n f id e l i ty , w h i l e a n o l d e r n o n - i n f e c t e d s i b l i n g w o u l d b e b e s ts e r v e d b y i n d i v i d u a l c o u n s e l in g t o a d d r e ss f e a r s o f a b a n d o n m e n t a n di s o l a t i o n . M e n t a l h e a l t h s e r v i c e s n e e d t o b e c u l t u r a l l y s e n s i t i v e a n da r e b e s t u t i l i z e d w h e n i n t e g r a t e d i n t o a c o m p r e h e n s i v e s y s te m o f c a r ef or c h i l d r e n w i t h H I V i n f e c t io n a n d t h e i r f a m i li e s .

Individual. A r a n g e o f i n d i v i d u a l t h e r a p y i n t e r v e n t i o n s a r e o f a s-s i s t a n c e t o f a m i l y m e m b e r s . F o r t h e c h i l d , p l a y t h e r a p y i s o f t e n au s e f u l t h e r a p e u t i c m o d a l i t y in p r o v i d i n g a s t r u c t u r e i n w h i c h t h ec h i ld c a n w o r k t h r o u g h f e e li n g s o f i so l at io n , s e p a r a t io n , a n d a b a n d o n -m e n t . P l a y t h e r a p y c a n a ls o p r o v id e a s a fe a t m o s p h e r e f or th e c h i ld tol e a r n s k i l ls i n c o p i n g w i t h i n v a s i v e m e d i c a l p r o c e d u r e s w h i l e re e n a c t -i n g p r e v i o u s t r a u m a s ( W i e n e r & S e p t i m u s , 19 90). A d o l e s c e n t s a l sob e n e f i t f ro m i n d i v i d u a l c o u n s e li n g . C o u n s e l i n g w i t h a d o l e sc e n t s m o s to f te n a d d r es s e s r e s e n t m e n t d u e to d e p e n d e n c e on p a r e n t s a n d o n th em e d i c a l c o m m u n i t y a t a t i m e w h e n t h e i r p e e r s a re m o v i n g t o w a r d am o r e i n d e p e n d e n t li fe s ty le . I n f a ct , t h e m o s t d a m a g i n g r e s u l t o f H I Vo n t h e a d o l e s c e n t is i t s e f fe c t o n t h e f o r m a t i o n o f r e l a t i o n s h i p s o u t s i d et h e f a m i l y ( T r o ss & H i r s c h , 1 98 8). T h e f e a r o f b e i n g r e j e c t e d b y o n e s 'p e e r s i s o f te n g r e a t e r t h a n t h e f e a r o f d y i n g f r o m t h e d i s e a se . T h i s to oc a n l e a d t o p o o r s c h o ol p e r f o r m a n c e , d e p r e s s io n , i s o la t i o n ( W i e n e r &S e p t i m u s , 1 9 90 ), a n d a c t i n g o u t b e h a v i o r s . I n t e r v e n t i o n s n e e d t o co n -c e n t r a t e o n h e l p i n g t h e a d o l e s c e n t t o fo c u s o n l i v i n g fo r t o d a y , w i t h i nt h e c o n f in e s o f t h e d i a g n o s i s by i d e n t i fy i n g s t r e n g t h s a n d a r e a s o f h i so r h e r l i f e i n w h i c h t h e y c a n b e i n c o n t r o l a n d b y i n c r e a s i n g t h e i rs u p p o r t n e t w o r k w h i c h w i ll in t u r n r e d u c e th e i r i so l a ti o n a n d a c h i e v ea g r e a t e r s e n s e o f i n d e p e n d e n c e .

Couple and Family. F o r p a r e n t s a n d o t h e r f a m i l y m e m b e r s , s u p -p o r t iv e a n d / o r i n s i g h t - o r i e n t e d t h e r a p y m a y a s s is t i n c o p i n g w i t h t h i sc h r o n i c a n d d e b i l i t a t i n g i l l n e s s a n d t h e i m p a c t i t h a s o n a l l r e l a t i o n -s h ip s . F a m i l y c o u n s e l i n g c a n p a v e t h e w a y f or m o r e o p en c o m m u n i c a -t io n b e t w e e n f a m i ly m e m b e r s , to m a k e f a m i ly b a se d t r e a t m e n t d ec i-s io n s , a n d i n m a n y c a s e s t o p l a n f o r f u t u r e c a r e f o r t h e c h i l d i f /w h e n ap a r e n t i s u n a b l e t o c o n t i n u e d t o p r o v i d e t h i s c a r e .


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Support Groups. B e c a u s e s o m a n y p a r e n t s f e e l t h e y c a n n o t a f f o r dt h e l u x u r y o f t r u s t a n d t h e r ef o r e do n o t s h a r e t h e d ia g n o s is w i t h m o s tp e o p l e ( i n c lu d i n g a t t i m e s t h e i r o w n i m m e d i a t e f a m i ly ) t h e y a r e f a ce dw i t h l i v in g i n e m o t i o n a l i so l at io n . M a n y p a r e n t s h a v e a s t r o n g n e e dt o t a l k o r r e a c h o u t t o o t h e r s c o n f r o n t e d w i t h t h e s a m e s i tu a t i o n . S u p -p o r t g r o u p s h a v e b e e n e f fe c ti ve in p r o v i d i n g a f o r u m i n w h i c h f a m i -l ie s c a n s h a r e w i t h o n e a n o t h e r t h e i r f e a r s, f r u s t ra t i o n s , a n d f e e l i n g so f h o p e a s w e l l a s d e s p a ir . G r o u p s u p p o r t c a n h e l p r e d u c e p a r e n t s 'f e e l i n g s o f a l i e n a t i o n a n d p r o v i d e m o d e l w a y s i n d i v i d u a l s a n d f a m i -l ie s c o p e w i t h A I D S . I t h a s a l so b e e n s u c c e s s f u l i n e n a b l i n g p a r e n t s t od e v e l o p a m o r e p o s i t iv e s e n s e o f t h e m s e l v e s a s p a r e n t s , t h a t is , l es sh e l p l e s s a n d b o t h m o r e p r o a c t i v e a n d e m p o w e r e d .

T h e P e d i a t r ic B r a n c h o f t h e N a t i o n a l C a n c e r I n s t i t u t e r u n s a f a m -i ly s u p p o r t g r o u p t h r e e t i m e s a w e e k . I t is a n o p e n - e n d e d g r o u p a n ds in c e th e g o a ls o f t h e g r o u p a r e n o t " t h e r a p y " i n n a t u r e b u t r a t h e rs u p p o r t i v e a n d i n f o r m a t i v e , a ll p a r e n t s w h o a r e i n t e r e s t e d i n m e e t i n go t h e r p a r e n t s w h o h a v e a n H I V - i n f e c te d c h i ld a r e i n v i t e d a n d e n c o u r-a g e d t o a t t e n d . G r o s s l y d i s t u r b e d p a r e n t s o r p a r e n t s w h o a r e i n ad r u g i n d u c e d s t a t e a r e u s u a l l y e x c l u d e d u n t i l i t i s f e lt t h a t t h e i r b e -h a v i o r w i l l n o t d i s t u r b t h e g r o u p i n t e g r i t y . T h e m e s i n t h e g r o u p i n -c l u d e t h e i m p a c t o f t h e d i a g n o s i s o n t h e i r l i v e s, t h e n e e d t o l i e too t h e r s , i s o l a t io n , t h e l o s s o f l if e a s i t o n c e w a s , f e e l i n g s o f r e s p o n -s ib i li ty , a n d t h e f e a r o f e i t h e r h a v i n g t o g o o n w i t h l i fe w i t h o u t t h e i rc h i l d b y t h e i r s i d e o r t h e f e a r o f t h e i r c h i l d h a v i n g t o g o o n w i t h l if ew i t h o u t t h e m b y t h e i r s id e . P r a c t i c a l a d v i s e r e g a r d i n g b e n e f it s, t a lk -i n g t o f a m i ly , f ri e n d s a n d e m p l o y e r s a b o u t t h e i r d i a g n o si s, a n d t r e a t-m e n t o p t io n s is a l so c o m m o n ( W i e n e r & S e p t i m u s , 1 99 0).

O u r f a m i l i e s c u r r e n t l y t r a v e l f r o m 3 6 d i f f e r e n t s t a t e s w i t h i n t h eU n i t e d S t a t e s t o c o m e f or t r e a t m e n t . W h i le t h e p r e v e n t a t i v e a n dh e a l i n g q u a l i t i e s o f t h e g r o u p h a v e f a r - re a c h i n g i m p l ic a t io n s ( W i e n e r& S e p t i m u s , 1 99 0) , p r o v i d i n g c o n s i s t e n t g r o u p s u p p o r t is n o t p o s s ib l ed u e t o g e o g r a p h i c l o c a t i o n . T h e r e f o r e , w e h a v e i n i t i a t e d N a t i o n a lT e l e p h o n e S u p p o r t G r o up s . T h e r e a r e g r o u p s f or g r a n d m o t h e r s w h oa r e p r i m a r y c a r e g iv e r s , g r a n d f a t h e r s , i n fe c t ed a n d n o n - i n f e ct e dm o t h e r s , i n f e c t e d a n d n o n - i n f e c t e d fa t h e r s , s i b l in g s o f i n f e c t e d c h il -d r e n a n d a g r o u p f o r i n f e c te d c h il d r e n th e m s e l v e s . T h e g r o u p s l a s tf r o m 4 to 6 w e e k s a n d t h e s e s si o n s a r e a p p r o x i m a t e l y on e h o u r e a c hw e e k . I n o r d e r t o a s s e s s t h e u s e f u l n e s s o f t h i s s u p p o r t m o d a l i ty e a c hs e s s i o n i s a u d i o t a p e d a n d b o t h a p r e - t e s t a n d a p o s t - t e s t q u e s t i o n -n a i r e a r e a d m i n i s t e r e d . T h e q u e s t i o n n a i r e s a s s e s s i s o l a t i o n a n dg r o u p u s e f u l n e s s i n t e r m s o f c o p in g s tr a te g i e s . T h e s e g r o u p s e x p a n d


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our ability to counsel and support those living in rural areas withlittle local support services available to them. They also present asafe avenue of expression for participants not yet ready to talk toothers face to face.Ant ic ipatory Los s an d Bereavement Counsel ingFamily members can also use therapy to address their anticipatorygrief which often manifests at the time of diagnosis and continuesthroughout the child's illness (Macks, 1987). Losses often includethe loss of hopes of the family's future together (Boland et al., 1987),the loss of a sense of invulnerability, the loss of financial security,loss of physical well-being, and loss of life as it once was. Ant icipatoryloss remains a common theme as the children one has gotten to knowwell die. When another child in the program becomes seriously ill ordies, families who know the child and his or her family are confrontedwith the seriousness of their own child's illness. The need for immedi-ate and consistent support services at this time is essential. Parentswho are themselves infected are encouraged to plan for those theymight leave behind whether it be their parents, siblings, partner, orchildren. They are encouraged to leave letters, a poem, a special pieceof jewelry, and when possible, personal videotape messages for thosewho are most important in their lives.

Due to the unpredictable natu re of HIV it is not always possible toplan for the child's final days or weeks (Wiener & Septimus, 1990).Support services are critically needed during the terminal phase of achild's illness and after a child's death. Children old enough to knowthat they are dying benefit greatly from the opportunity to talk abouttheir fears, anxieties, and thoughts about death and separation fromtheir loved ones. Older children often like to leave letters and specialitems for their parents, siblings and friends. Regardless of the extentto which parents believed themselves to be prepared, the actual deathof the child initiates an extended period of grieving that is both in-tense and slow to resolve (Howell & Martinson, 1989). Regular phonecontact between the social worker and family after the child's deathallows parents to reflect on the child's life, their relationship and toventilate and work through feelings of sadness and anger. Periodiccontact also allows the social worker to monitor pathological behav-iors associated with bereavement such as extreme depression or sui-cidality. Plans are also underway to conduct a retrospective bereave-ment study, in an attempt to learn more about the impact of death onthe family unit. Participating families will be brought back to the


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396 CHILDAND ADOLESCENT SOCIAL WORKJOURNAL

h o s p i t a l o n a y e a r l y b a s i s , b a c k t o t h e p l a c e w h e r e t h e y f e l t a c c e p t e da n d s a f e .Advocacy Services Within a Case Management Approach to CareF a m i l ie s w i t h o n e o r m o r e m e m b e r s i n f e c te d w i t h H I V a r e f a c e d n o to n l y w i t h m a n y d e b i l i t a t i n g m e d i c a l a n d p s y c h o s o c ia l p r o b l e m s b u tc a n a ls o b e c o n f r o n t e d w i t h a v a r i e t y o f c o m m u n i t y b a s e d d if fi cu l ti es .P e d i a t r i c A I D S i s o f t e n a s s o c i a t e d w i t h a w e b o f s p e ci fi c s o c ia l p r o b -l e m s s u c h a s p o v e r t y , h o m e l e s s n e s s , d r u g a b u s e , a n d l a c k o f n e e d e dr e s o u r c e s a l l o f w h i c h t a x t h e f a m i l y a n d c h a l l e n g e t h e s o c ia l w o r k e r .F o r e x a m p l e , b e si d e s l o s in g h e a l t h , a g o o d a m o u n t o f f r e e d o m a n d t h ee v e n t u a l p r o b a b i l it y o f l if e , f a m i l ie s m a y a ls o e x p e r i e n c e lo s s o f i n-c o m e , e d u c a t i o n a l o p p o r t u n i t i e s , f r i e n d s h i p , a b i l it y to p a r e n t , a n d t h ea b i li ty t o r u n a h o u s e h o l d . W h e n t h e y a p p r o a c h v a r i o u s b u r e a u c r a t i cs y s t e m s f or a s s i s ta n c e , t h e y f r e q u e n t l y f in d c o m p l e x p r o c e d u r e s , o v er -w o r k e d s t a f f a n d a t t i m e s h o s t i li ty . B a r r i e r s s u c h a s t h e s e a r e e n o u g ht o d i s c o u r a g e m a n y a l r e a d y d e p r e s s e d f a m i li e s f r o m o b t a i n i n g s e rv -i ce s t h e y d e s e r v e t h u s c a u s i n g a s e n s e o f d i s tr u s t , a p a t h y , a n d f u r t h e ru n d e r m i n i n g t h e i r q u a l i t y o f li fe . N o t o n l y is th e r e a n e e d t o co o rd i-n a t e m e d i c a l c a r e f o r t h e c h i l d a n d t h e f a m i l y , b u t a l s o t h e s o c i a ls e r v i c e s t h a t a n i n d i v i d u a l c h i l d a n d f a m i l y r e c e i v e m u s t b e i n t e -g r a t e d i n to t h i s p ro c es s. C a s e m a n a g e m e n t is w e ll k n o w n to t h e s o ci alw o r k p r o f e s s io n a n d is t h e v e h i c le f or c o o r d i n a t in g m u l t ip l e n e e d e ds e r v ic e s t h r o u g h c o n s i s t e n t a n d c o m p l e x i n t e r a g e n c y l in k a g e s . ( S e eF i g u r e 1) T h e c a se m a n a g e r ' s j o b e n t a il s 1 ) e n s u r i n g t h a t c h i l d r e na n d f a m i l ie s h a v e a c c e ss to a l l n e e d e d s e rv i c es ; 2) p r o m o t i n g i n te -g r a t e d c a r e b y l i n k i n g m e d i c a l, d e v e l o p m e n t a l , a n d c o m m u n i t y s o ci als e r v i c e p r o v i d e r s ; 3 ) b e i n g a n a d v o c a t e f o r a n d l i a i s o n b e t w e e n t h ef a m i ly a n d o t h e r m e m b e r s o f t h e h e a l t h c a re t e a m ; a n d 4 ) e m p o w e r -i n g f a m i l i e s in t h e c a r e o f t h e i r c h i l d r e n a n d t h e m s e l v e s ( F a m i ly -C e n t e r e d C o m p r e h e n s i v e C a r e f o r C h i l d r e n w i t h H I V I n f e c ti o n , i np res s ) .Case Management ApproachD u e t o t h e c o m p l e x i ty a n d m u l t i p l i c i t y o f n e e d s t h a t a l l f a m i li e s re -q u i r e , e a c h f a m i l y i s a s s i g n e d a s o c i al w o r k e r w h o a c t s a s a c a s e m a n -a g e r . T h i s w o r k e r i s r e s p o n s ib l e fo r id e n t if y i n g , t r a n s l a t i n g a n d c o m -m u n i c a t i n g p s y c h o s o c i a l n e e d s t o t h e o t h e r d i s c i p l i n e s i n v o l v e d a sw e l l a s to t h e f a m i l y it se lf . T h i s r e q u i r e s c o n t a c t w i t h t h e p a t i e n t a n df a m i l y w h i l e i n c l in ic a n d b y t e l e p h o n e i n t h e c o m m u n i t y . T h i s a ls oe n c o m p a s s e s f r e q u e n t c o n t a c ts w i t h c a s e m a n a g e r s i n o t h e r a g e n c i e s


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L O R I W I E N E R E T A L . 3 97

H I V - In f e c t e d C h i l d r e n a n d F a m i l i e sC a s e M a n a g e m e n t A p p r o a c h t o C a re

O ~.\ .+ ~ M ed ica # ~ ,. '-.s 6~ e ~ t 'o , ~ C a r e " - v - - ~ 4 6 : ~2 n e e' r eS /re , r ee,,t.o " 1 r " 4 " ; ? o + , .

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I n te r a g e n c y L i n k a g e s T o w a r d C o m p r e h e n s i v e F a m i l y -B a s e d C a r eF I G U R E 1

w h o a r e a l so i n v o l v e d i n t h e f a m i l y 's c a re . N o t e v e r y c h i l d a n d f a m i l yw i l l n e e d e v e r y s e r v i c e l i st e d . T h e p a r t i c u l a r c o n s t e l l a t i o n o f s e r v ic e sr e q u i r e d b y a n i n d i v i d u a l c h i ld a n d f a m i l y w i l l v a r y d e p e n d i n g o n t h ec h i ld a n d f a m i l y s t r e n g t h s , p h y s ic a l , e m o t io n a l a n d f i n a n c ia l n e e d s ,a n d r e s o u rc e s ( F a m i l y - C e n t e r e d C o m p r e h e n s i v e C a r e f o r C h i l d r e nw i t h H I V I n f e c t i o n , 1 9 9 0 ) . N e v e r t h e l e s s , i n t e g r a t e d a n d c o o r d i n a t e ds e r v ic e s a r e e s s e n t i a l a n d t h e y f a ll i n to t h e f o l lo w i n g g e n e r a l c a te g o -r i es .

Financial. M a n y f a m i l ie s a r e a l r e a d y r e c e i v in g p u b li c a s s is t a n c e a tt h e t i m e t h e y l e a r n o f t h e i r H I V i n fe c ti on . O t h e r p a r e n t s o f H I V -i n f e c t e d c h i l d r e n a r e a t r i s k f o r l o ss o f i n c o m e . T h e y m a y m i s s w o r ki n o r d e r to k e e p m e d i c a l a p p o i n t m e n t s o r to b e p r e s e n t d u r i n g h o s p i-


18/27


talizations. In addition, this ri sk increases with the number of familymembers infected with the virus. Infected parents may find work nolonger possible due to thei r own physical limitations and others havebeen "laid off," or "fired" by an employer worried about loss of busi-ness or the concerns of other employees.Furthermore, public and medical assistance are often difficult toobtain for parents who find themselves unemployed. Even though achild is ill and receiving SSI, for instance, a parent may still need toprove why he or she cannot work. Even though it would seem easy toprove that one is disabled or needs to care for a sick child, it may bean all but impossible task depending upon how the case is presented,the application worded, or the specific state regulations which arebased on savings and income level. Parents and child are occasionallyfound living on jus t the SSI award to the child.When a family that had previously enjoyed a stable life style losesits income, formerly manageable debts often become impossible topay. Mortgage companies, depar tment stores, utilities, and hospitalsare among the creditors that begin to apply pressure taking a goodmeasure of pride away from the family and creating another loss. Thesocial worker, as an advocate, intervenes in these situations by en-couraging families (and thus empowering them) to request, docu-ment, negotiate, and appeal negative decisions. When necessary, thesocial worker will search for and provide the family with emergencyassistance in order to mee t thei r immedia te financial needs and hope-fully, allow them to retain some control.

Legal. Legal intervention is a critical component in the care ofHIV-infected children and families. Legal intervention is oftenneeded in order to prospectively plan for the child's health care andcustody ar ran gement s (Chachkes, 1987). Assisting parents in identi-fying future care providers for their children, ensuring a durablepower of attorney, ar ranging legal custody, preparing wills or helpingfoster families obtain the rights to make medical decisions are bestdone as early as possible (Wiener & Septimus, 1990).Legal intervention may be needed in other areas as well. Whetherit is the employer who denies work to a parent or a school districtthat denies education to a child--because of the fear of HIV, the fam-ily often suffers severe discrimination. The social worker, as an advo-cate, must first try to help the family members find means to educateand reason with frightened, uninformed people who would deny themtheir rights. If these attempts fail, however, the worker needs to help


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the family determine if it wishes to exercise thei r legal rights and, ifso, help find a means of action in order to invoke anti-discriminationprotections. Local AIDS organizations often have legal services avail-able. In addition, state bar associations, legal aid societies, and manylaw schools encourage "pro bono" services by both law students andpracticing a ttorneys (Family-Centered Comprehensive Care for Chil-dren with HIV Infection, 1990).Housing. In our experience, housing is one of the most emergentneeds of HIV-infected women and children. Most women infected withHIV are poor and have a host of other social problems such as familyviolence and drug abuse (Family-Centered Comprehensive Care forChildren with HIV Infection, 1990). Therefore, their housing ar-rangements are often tenuous at the onset of illness. A landlord maytry to evict the family due to fear of the disease or because the ren t islate. As the ir own infection progresses, parents may become unable tolive independently and provide proper care for their children. Theybecome in need of supportive housing a rrangement s that provide su-

pervised care for the whole family. Still others with HIV infection,including women and children are homeless and live in shelters or inthe street (Family-Centered Comprehensive Care for Children withHIV Infection, 1990). Therefore, housing support services are an im-portant component of the case management approach aimed to pro-vide comprehensive services to the family, especially with drug usingfamilies.Substance Abuse and Child Welfare. HIV infection in children is

inextricably linked to drug use in adults. Drug treatment, when suc-cessful, can enable families to continue to care for the ir infected chil-dren at home. It also has implications for the type of care available tothe child. In order to trea t a child effectively with in a clinical trial,one must be able to rely on the input and cooperation of the parents.If a parent is actively using drugs, rel iability and cooperation cannotbe assured. In the NCI program a child cannot participate if the par-ent is an active drug user and the family is without the availability ofan alte rnat ive legal guardian. Therefore, one of the goals of our pro-gram is to coordinate drug treatment with the other medical and so-cial services available within each family's home community. Whenthis is not possible, every effort is made to obtain an alternative careprovider.Even after drug dependent family members complete their treat-


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400 CHILD AND ADOLESCENT SOCIAL WORK JOURN AL

men t program, th e ri sk of relapse is great due to the enormous stressassociated with witne ssin g the effects of the virus on their child(ren),the dea th of a child or changes in the ir own health. Therefore, thesocial worker must help and encourage parents to continue with drugtreatment and other available support programs. However, in manyinstances, in fants and children of drug-addicted parents are referredto protective services and become intertwined in the child welfaresystem. In such cases, foster care is obtained until t hei r parent(s) canprovide a safe home for them. Such out-of-home placements usuallyentail frequent moves and multiple primary caregivers and are ex-tremel y stressful for both the child and parent(s). In some situations,group care may be necessary for children awaiting foster or adoptivehomes or for those awa iti ng reunific ation with t heir families (Family-Centered Comprehensive Care for Children with HIV Infection, inpress).

A numbe r of other services are needed in an att emp t to providecoordinated and comprehensive care as t he following case exampledemonstrates:

A 37-year-old committed and nurturing mother contacted the socialworker in order to enroll her 14 month old HIV-infected daughter on anexperimental treatment protocol. Due to ongoing substance abusewhich had intermittent ly interfered with her ability to care for her chil-dren, the social worker encouraged the mother to enter a drug treat-ment program. The mother agreed to do so. As both mother and daugh-ter were well known to the social worker at their local hospital,arrangements for in-patient drug trea tment were made in collaborationwith her.At the time the family presented to our program, mother was livingwith a physically abusive boy-friend. This mother had two otherdaughters each from a different relationship. One was 22 years old,married and living in a different state. The other, 19 years old, wassingle, actively abusing drugs and living with her maternal aunt. Shehad a 5-month-old daughter of her own with severe birth defects. Due tomedical complications and an unstable and complex home situation thischild remained hospitalized until her death at the age of 9 months.Following this child's death, this 19-year-old girl alternated betweenher mother's home and the street. When living in her mother's houseshe continued to use drugs and borrow and steal from home in order tosupport her drug habit.The NCI social worker established contact with the county humanresources worker assigned to the family at home and was able to obtaina very clear understanding of the very chaotic environment in whichthe family was living. This social worker was also able to establishcontact with a project that was able to provide an apartment for the


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mother and child in a building just opened to provide housing for fami-lies with AIDS. The worker then spoke with the local electric and tele-phone utilities helping to re-establish services that were being deniedto this family because of unpaid bills. The worker was able to find fundsto help pay some of the back payments and to negotiate payment plansfor the remainder. Despite continued efforts, the 19-year-old daughterrefused to enter drug t reatment and remains on the streets.During visits to NCI, this mother had been observed to be interestedin and motivated toward her child's care although her parenting skills,especially in relationship to providing good nutrit ion, were lacking. Shewas able to comply with a rather sophisticated regimen of medicationand she was very attentive toward her child's needs. Her local hospitalsocial worker agreed that she had strengths as a parent. Therefore,when Child Protective Services in the family's local community at-tempted to remove the child from her home because of the mother'sabuse of prescription drugs and alleged prostitution, the NCI socialworker in concert with the local hospital social worker was able to dem-onstrate the importance of keeping mother and child together. The localworker was able to coordinate a drug treatment program while bothworkers provided counseling and education to the mother about HIVand the dangers of unprotected sexual activity. Parent-to-parent net-working was obtained through the drug treatment program and throughmonthly NCI support group meetings. Child protective services wasable to provide transportation and child care so that the mother couldattend drug treatment and her own medical appointments. The motherwas referred to the NCI nutritionist for counseling and a back-up planconsisting of alternative legal guardians through the foster care pro-gram was developed.Drug abuse treatment along with well coordinated medical and so-

cial services enabled this mother and child to remain together. Asthis case illustrate s, a wide ar ra y of services is essential in order tomeet the complex needs of HIV-infected children and their families.However, the services are not effective unless the y are linked to-gether. Coordination is the key to these linkages for each individualchild and family. It is also essential as we work toward interagencyand interdisciplinary partnerships.Coordinating a Multidisciplinary Team ApproachThe NCI model offers each fa mily a pr ima ry tea m consisting of a so-cial worker, nurse, nurs e practitioner, phys ician, and psychologist. Inaddition, a variety of attending physicians, pharmacist and recre-ational therapists are always involved. The extended team meetseach morning for "work rounds", a forum to review the preceedingday's patients and to plan for the current day. A weekly meeting,"mul tidis cipli nary rounds" chaired by social work, is also held to re-


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402 CHILDAND ADOLESCENT SOCIAL WORKJOURNAL

view specific medical and psychosocial concerns. This is at tended bythe core team as well as s taff from other disciplines such as a bioethi-cist, chaplains, an occupational and physical therapist, and educators.Psychosocial issues play an integral role in the overall picture of thepatient and are a major component of planning.Additionally, whenever a new treatment is indicated, a conferenceis held between the physician, social worker, nurse and parent(s).Parents and older patients are viewed as contributors to any plansand, as it should be, the final decision makers.Empowering the Family with AID SWhile any serious illness has a profound effect on a family, AIDS hasunique effects on family functioning and cohesiveness. Other illnesseselicit support r ath er than condemnation from representatives of thecommunity and from extended family members. Families often expe-rience a sense of powerlessness in the face of family, school or commu-nity reactions to the diagnosis. Parents experience tremendous feel-ings of helplessness as they watch thei r child become increasingly ill.Therefore, it is important that families are enabled to participate inmedical decisions, share common experiences with other families andmaintain as normal a life as possible.Family-to-family support and networking can provide a significantsource of support. These support systems can ease frustration, over-come loneliness and end social isolation. Such networks also provide anon-threatening, supportive setting for families to help others by es-tablishing a two-way process that, in itself, is therapeutic and em-powering (Family-Centered Comprehensive Care for Children withHIV Infection, 1990). Empowerment is not new to social workers.Mental health services that enable and empower families throughstrong therapeutic relationships and networking and that combat asense of alientation are essential. Families also appreciate first handknowledge of what resources, trea tme nt and information is availableon a national basis. This can be implemented through referrals toNational Pediatric AIDS organizations. (See Table 4.) Empowermentprovides families with new learning experiences and opportunities,motivates change, enhances a sense of efficacy and encourages asense of hope as the following programs demonstrate (Family-Cen-tered Comprehens ive Care for Children with HIV Infection, in press).

National Telephone Network. As stated earlier, families who re-ceive treatment at NCI come from many different geographic loca-


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T A B L E 4N a t i o n a l P e d i a t r i c H I V / A I D S O r g a n i z a t i o n s

T h e P e d i a t r i c A I D S C o a l i t i o n , a c o a l i ti o n o f 2 1 n a t i o n a l o r g a n i z a -t i o n s t h a t a d v o c a t e f o r t h e c h i l d r e n , a d o l e s c e n t s , f a m i l i e s a n d t h e i rc a r e g i v e r s w h o s e li v e s a r e a f f e c te d b y H I V i n f e c t i o n a n d A I D S .S t a ff e d b y t h e A m e r i c a n A c a d e m y o f P e d i a tr i cs ; t h e N a t i o n a l A s so -c i a t io n o f C h i l d r e n s H o s p i t a l s a n d t h e N a t i o n a l P e d i a t r i c H I V R e -s o u r c e C e n t e r , t h e C o a l i t i o n s e r v e s a s t h e p e d i a t r i c t a s k f o r c e f o r t h eN a t i o n a l O r g a n i z a t i o n s R e s p o n d i n g t o A I D S ( N O R A ) a n d a d v o c a t e sb e f o r e C o n g r e s s fo r b e t t e r l a w s a n d a p p r o p r i a t i o n s o f f u n d s . ( P h o n e2 0 2 -6 6 2 -7 4 6 0 )N a t i o n a l P e d i a t r i c H I V R e s o u r c e C e n t e r , p r o v i d e s c o n s u l t a t i o n ,t e c h n i c a l a s s i s t a n c e , t r a i n i n g & p u b l i c p ol ic y a n a l y s i s r e l a t e d t o t h ec a r e o f c h i l d r e n , a d o l e s c e n t s & f a m i l i e s w i t h H I V i n f e c ti o n . T h e r e -s o u rc e c e n t e r is b a s e d i n N e w a r k , N e w J e r s e y a n d h a s a W a s h i n g t o n ,D . C . o f f i ce . (P h o n e 1 -8 0 0 -3 6 2 -0 0 7 1 )T h e P e d i a t r i c A I D S F o u n d a t i o n , a f o u n d a t i o n t h a t a d v o c a t e s t oi m p r o v e a n d i n c r e a se b a s ic f u n d a m e n t a l p e d i a tr i c A I D S r e se a r c h .T h e f o u n d a t i o n i n i t i a t e d a n E m e r g e n c y A s s i s ta n c e P r o g r a m f or fa m i -l ie s w h i c h d i s t r i b u t e d f u n d s t o 52 c e n t e r s t h r o u g h o u t t h e U n i t e dS t a te s . I t a l s o h a s t h e a d d i t i o n a l g o a l o f c r e a t i n g a n a t i o n a l p a r e n te d u c a t i o n P r o g r a m . ( P h o n e 3 1 0 - 3 9 5 - 9 0 5 1 )T h e F o u n d a t i o n f o r C h i l d r e n w i t h A I D S , I n c . , p ro v id e s a n e t w o r kf o r p r o f e s s i o n a l s w o r k i n g w i t h d r u g e x p o s e d a n d H I V - i n f e c t e d c h i l -d r e n a n d t h e i r f a m i li e s. T h e f o u n d a t i o n a d v o c a te s fo r q u a l i ty s e r vi c esf or d r u g e x p o s e d a n d H I V - i n fe c t e d c h i ld r e n a n d t h e i r f a m i li e s; p r o-m o t e s a n d p r o v i d es i n n o v a t i v e , c o m p r e h e n s i v e , f a m i l y - c e n t e r e d a n dc o m m u n i t y b a s e d s e r v i c e s fo r c h i l d r e n a n d f a m i l ie s ; p r o v i d e s a n e t -w o r k f o r p r o fe s si o n a ls ; a n d d i s s e m i n a t e s s t a t e o f t h e a r t i n f o r m a t i o na b o u t t h e i s s u e s , n e e d s , a n d s e r v i c e s f o r d r u g e x p o s e d a n d H I V i n-f e c te d c h i l d r e n a n d t h e i r f a m i l i e s to p r o f e ss i on a l s, f a m i l y m e m b e r s ,d e c i s io n a n d p o l ic y m a k e r s a n d t h e p u b l i c . ( P h o n e 6 1 7- 7 83 - 73 0 0 )A s s o c i a t i o n f o r th e C a r e o f C h i l d r e n 's H e a l t h ( A C C H ) i s a n e d u -c a t i o n a n d a d v o ca c y o r g a n i z a t io n d e d i c a t e d to p r o m o t i n g f a m i ly - c en -t e r e d a p p r o a c h e s t o c a r e f o r a l l c h i l d r e n . T h e P e d i a t r i c A I D S C a m -p a i g n / F a m i l y - C e n t e r e d H I V P r o j e ct is a s p e ci al i n i t i a t iv e d e s i g n e d toi n c r e a s e f a m i l y - t o -f a m i l y s u p p o r t a n d n e t w o r k i n g f or f a m i l ie s c a r i n gf o r c h i l d r e n w i t h H I V i n f e c t i o n . F a m i l i e s m e e t t w o o r t h r e e t i m e s ay e a r f o r e d u c a t i o n a l , s k i l l - b u i l d i n g , a n d n e t w o r k i n g a c t i v i t i e s , a n dp a r t i c i p a t e i n r e l e v a n t n a t i o n a l , r e g i o n a l , a n d l oc a l c o n f e re n c e s a n dw o r k s h o p s . T h e F a m i l y N e t w o r k N e w s l e t t e r r e p o r t s o n u p c o m i n ge v e n t s a n d p r o v i d e s a n o p p o r t u n i t y fo r fa m i l ie s to s h a r e e x p e r ie n c e s ,i n f o r m a t i o n a n d r e s o u r c e s w i t h o t h e r s . ( P h o n e 30 1 -6 5 4 -6 5 4 9)


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tions. They often feel isolated in their home communities and havefew resources for emotional support. The National Telephone Net-work was developed in an attempt to provide family to family net-working for all families whose children are receiving treatment atour facility for HIV infection. On an as requested basis, child-to-child,sibling-to-sibling, parent-to-parent, and grandparent-to-grandparentnetworking is arranged through tele-conferencing. Almost all newfamilies are linked with another family through the telephone net-work prior to their first visit. This allows families who are facing theprospects of placing their child on a clinical trial the opportunity totalk to parents whose child is already on a protocol. Parents who areplacing the ir child in day care can be connected with parents whohave already gone through a similar process. Siblings of infected chil-dren can talk to other siblings and share common fears and experi-ences. Infected children also have the opportunity to talk with otherinfected children on the National Telephone Network. This modalityis also extremely useful for bereaved family members who are with-out the support of the hospital staff.

Volunteer In-House Program. During the first day of the initialevaluation each family is introduced to a volunteer. The volunteeraccompanies the family to various tests and scans which are scat teredthroughout the hospital. This reduces feelings of helplessness and re-lieves many anxieties new families have about finding their wayaround. The volunteer and families o~en develop strong bonds thatempower them together to th en help other new families entering theprogram.

Host Volunteer Program. The Host Volunteer Program is run by anorganization called Pediatric Care. This program recruits volunteerswho may only have weekends or evenings available to volunteer. Thename of a new family is given to a volunteer who contacts the familywhen they first arrive at the hospital. Volunteers assist and carry outmany different activities with families ranging from giving them atour of Washington, D.C. on the week-end to taking them to the groc-ery store or just providing emotional support and company. Familiesand volunteers often maint ain contact with each other aRer the fam-ily has return ed home and are available as a resource for subsequenthospital visits.

The Children's Inn. The Children's Inn is a facility within walkingdistance from the hospital where pediatric patients at the National


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I n s t i t u t e s o f H e a l t h a n d t h e i r f a m i l y m e m b e r s c a n s t ay . T h i s f ac i li tyi s d e s i g n e d t o b e a h o m e a w a y f r o m h o m e t h a t a ll o w s t h e f a m i l y to b ew i t h t h e i r c h i ld w h i l e u n d e r g o i n g t r e a t m e n t . F a m i l i e s a r e a b l e top r o v i d e e m o t i o n a l s u p p o r t f o r e a c h o t h e r a n d f o r o t h e r f a m i l i e s i ns i m i l a r s it u a t i o n s a w a y f r o m t h e h o s p i t a l. P a r e n t s s h a r e c o m m o n e x-p e r i e n c e s , h o p e s a n d f e a r s . T h e y o f t e n d e v e l o p l a s t i n g f r i e n d s h i p s ,s t r o n g e m o t i o n a l b o nd s , a n d s u p p o r t n e tw o r k s t h a t o t h e rw i s e w o u l dn o t h a v e f o rm e d . S u c h i n f o r m a l n e t w o r k i n g h a s e n a b l e d f a m i li e s toh e l p o t h e r s i n t i m e o f c r is i s.

C o n c l u s i o n

T h e o b s e r v a t i o n s t h a t h a v e b e e n d e s c ri b e d c o n c e r n i n g t h e r a n g e o fp s y c h o lo g i ca l b e h a v i o r s o f p e d i a t r ic A I D S p a t i e n t s a n d t h e p r o g r a mt h a t h a s b e e n d e v e l o p e d a r e b a s ed o n a s o m e w h a t n o n - r e p r e s e n t a t i v es a m p l e . A l l o f t h e c h i l d r e n t h a t w e h a v e w o r k e d w i t h w e r e r e fe r r e df o r a n e x p e r i m e n t a l t r e a t m e n t p r o g r a m . M a n y h a v e h a d s u p p o r t i v ea n d i n t a c t f a m i l i e s o r s u p p o r t i v e a n d d e d i c a t e d f o s t e r p a r e n t s . A p -p r o x i m a t e l y 40 % w e r e i n f e c te d t h r o u g h c o n t a m i n a t e d b lo o d p r o d u c t sw h e r e a s n a t i o n a l l y 1 5-2 0% o f a l l r e p o r t e d p e d i a t r ic A I D S c a s e s a r et r a n s f u s i o n r e l a t e d . T h e r e f o r e , t h e c l in i c a l f i n d i n g s m a y n o t a ll b eg e n e r a l i z a b l e t o o t h e r p e d i a t r i c A I D S p o p u l a t i o n s w i t h d i f f e r e n tb a c k g r o u n d a n d s a m p l e c h a r a c t e ri s ti c s . M o r eo v e r, t h e e p i d e m i c isc h a n g i n g . T h e b lo o d s u p p l y is n o w w e l l m o n i t o r e d a n d c o n t r o ll e d sot h a t i n t h e f u t u r e t h e r e w i l l b e v e r y f e w t r a n s f u s i o n r e l a t e d c a s e s .T h e r e i s e v i d e n c e t h a t t h e r e i s a n i n c r e a s i n g n u m b e r o f a d o l e sc e n t si n f e c te d t h r o u g h s e x u a l c o n t a c t a n d / o r i n t r a v e n o u s d r u g u s e . T h i sw i l l r e s u l t i n a s h i f t i n t h e i s s u e s, p r o b l e m s a n d p s y c h o s o c ia l d y -n a m i c s g e n e r a t e d b y t h e A I D S e p i d e m i c . T h i s s h i f t w i l l a l s o h a v em a j o r i m p l i c a t i o n s f o r s o c ia l w o r k e r s i n e v e r y a s p e c t o f p r a c t i c e f r o mc h il d- ca re , t o m e n t a l h e a l t h , p l a n n e d p a r e n t h o o d , d r u g t r e a t m e n tc e n t e r s , h o s p i t a l s , c o m m u n i t y b a s e d o r g a n i z a t i o n s , le g a l s e rv i c es , a n dsch o o l s .

C l e a r l y n o o n e p r o f es s io n c a n p ro v i d e a n d m e e t t h e m y r i a d o f n e e d sw h i c h H I V - i n f ec t e d c h i l d r e n a n d t h e i r f a m i l i e s c o n fr o n t. H o w e v e r , so -c ia l w o r k e r s , w i t h o u r e t h i c a l m a n d a t e t o s e rv e t h e p o o r a n d o p-p r e s s e d h a v e u n i q u e b r o a d - b a s e d t r a i n i n g a n d s k i l l s t o e n a b l e u s t op r o v i d e cl in i c al s e r vi ce s , p r o g r a m d e v e l o p m e n t , c o m m u n i t y b a s e dp r o g r a m s , c a se m a n a g e m e n t a n d a d v o c ac y t o th i s r a p i d ly e x p a n d i n gp o p u l a t io n . S o c ia l w o r k l e a d e r s h i p m u s t g o b e y o n d t h a t o f p a t i e n t


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4 06 C H IL D A N D A D O L E S C E N T S O C IA L W O R K J O U R N A L

c a r e a n d i n c l u d e p r e v e n t i o n , o u t r e a c h a n d p s y c h o s o c i a l r e s e a r c h .C l e a r l y , t h e p r o f es s io n a l a n d p e r s o n a l c h a l l e n g e s fa c i n g u s i n t h e1 9 90 's a r e g r e a t b u t t h e r e w a r d s - - e s p e c i a l l y i n th e a r e a o f p e r s o n a la c c o m p l i s h m e n t a r e e v e n g r e a t e r ( T r o s s & H i r s c h , 1 9 8 8 ) .

A c k n ow l e d gm e n t sT h e a u t h o r s w o u l d l i k e to a c k n o w l e d g e t h e i n v a l u a b l e s u p p o r t o f D r .P h i l i p P i zz o, C h i e f o f t h e P e d i a t r i c B r a n c h o f t h e N a t i o n a l C a n c e rI n s t i t u t e f o r h i s u n y i e l d i n g s u p p o r t o f t h e m e n t a l h e a l t h o f t h e c h il -d r e n , t h e i r f a m i l i e s a n d h i s s t a f f a n d o f E l i z a b e t h D u P o n t , s o ci al w o r ki n t e r n f or h e r c o m m i t m e n t to t h i s p r o je c t a n d c a r e fu l r e v i e w o f t h i sm a n u s c r i p t .

Re f e r e n c e sB e l f e r , M . L . , K r e n e r , P . K . , M i l l e r , F . B . , 1 9 8 8 . A I D S i n c h i l d r e n a n d a d o l e s c e n t s . Jour-

nal o f t he A m e r i c a n A c a d e m y o f C h i ld a n d A d o l e sc e n t P s y c h ia t ry , 27,147-151.Belman, A. , Lantos , G. , Horowpian , D. , Novick , B. , Ul lmann, M. , Dicksen , D. , Ruben-s tein , A. 1986 . AID S: Calci f icat ion of the basa l ga ngl ia in in f an ts a nd ch i ldren .N e u r o l o g y , 36,1192-1199.Boland , M. , Tasker , M. , Evans, D. , Keresztes , J . 1987 . Help ing ch i ldren wi th AIDS.The ro l e o f t he ch i ld wel fa re worker s . P ubl i c W e l fare , 45,23-39.Brouw ers , P . , Moss , H. , Wol ters , P . , Ed dy, J . , P izzo , P . June , 1989 . Neuropsycho logicalP ro f i le o f Ch i ld ren w i th S ym ptoma t i c HIV In fec t ion P r io r t o An t i -Re t rov i ra lT r e a t m e n t . P roceed ings o f t he 5 th In t e rna t iona l C on ference o n A ID S , Mont rea l ,C a n a d a .Chachkes , E. 1987 . Women and ch i ldren wi th AIDS. In : C.G. Leukefeld , M. Fimlores(eds.) R e s p o n d i n g t o A I D S : P s y c h o s o c ia l I n i ti a t iv e s . Si lver Sp r ing , MD: Nat iona lAss ociat ion of Social Wo rkers , 51-64.Dav is , S ., Ha ls ted , C . , Levy , N. , El l is , W. , 1987. Acq uired im m une deficiency s ynd rom epresen t ing as p rog ress ive in fan t i l e enceph

class 4_pediatrics_the emerging psycho social challenges_aids

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