THE RELATIONSHIP OF FAMILY FUNCTIONING TO THE SELF-CONCEPT OF ADOLESCENTS WITH CYSTIC FIBROSIS By M. I s a b e l l e Mac Leod B.N., M c G i l l U n i v e r s i t y , 1976 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER'S OF NURSING i n THE FACULTY OF GRADUATE STUDIES The S c h o o l o f N u r s i n g We a c c e p t t h i s t h e s i s as conforming t o the r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA NOVEMBER 1987 (c) I s a b e l l e Mac Leod 1987 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 Department DE-6(3/81) A b s t r a c t A d e s c r i p t i v e c o r r e l a t i o n a l s t u d y i n v e s t i g a t e d t h e p o s s i b l e r e l a t i o n s h i p b e t w e e n f a m i l y f u n c t i o n i n g a n d t h e s e l f - c o n c e p t d e v e l o p m e n t o f a d o l e s c e n t s w i t h c y s t i c f i b r o s i s ( C F ) . T w e n t y - t w o a d o l e s c e n t s r a n g i n g f r o m 13 t o 19 y e a r s o f age and members o f t h e i r f a m i l i e s v o l u n t e e r e d t o p a r t i c i p a t e . The a d o l e s c e n t s c o m p l e t e d t h e O f f e r S e l f - i m a g e Q u e s t i o n n a i r e (OSIQ) and t h e F a m i l y A s s e s s m e n t D e v i c e ( F A D ) . T h i r t y - f o u r f a m i l y members c o m p l e t e d t h e FAD. Mean s t a n d a r d s c o r e s f o r t h e s t u d y p o p u l a t i o n w e r e c o m p a r e d t o n o r m a t i v e v a l u e s f o r t h e OSIQ and t h e FAD. The Spearm a n r h o c o r r e l a t i o n p r o c e d u r e was u s e d t o i n v e s t i g a t e r e l a t i o n s h i p s b e t w e e n s c a l e s o f t h e two m e a s u r e s . F i n d i n g s f o r t h e s e l f - c o n c e p t m e a s u r e (OSIQ) r e v e a l e d t h a t t h e mean s c o r e s f o r t h e a d o l e s c e n t s w i t h CF w e r e b e t t e r t h a n n o r m a t i v e v a l u e s w i t h two e x c e p t i o n s ; t h e mean s c o r e was l o w e r t h a n n o r m a t i v e v a l u e s on t h e S e x u a l A t t i t u d e s S c a l e f o r m a l e s and f e m a l e s r a n g i n g f r o m 13 t o 15 y e a r s o f age and on t h e Body and S e l f - i m a g e S c a l e f o r m a l e s 13 t o 19 y e a r s a n d f e m a l e s 13 t o 15 y e a r s o f a g e . On t h e f a m i l y f u n c t i o n i n g m e a s u r e (FAD) t h e mean s c o r e s f o r a d o l e s c e n t s and t h e i r f a m i l y members w e r e " l o w e r t h a n s u g g e s t e d h e a l t h y c u t o f f s c o r e s ( E p s t e i n , B a l d w i n , & B i s h o p , 1983) w i t h t h e e x c e p t i o n o f a h i g h e r s c o r e on t h e R o l e s S c a l e . H o w e v e r , s c o r e s o f t h e s a m p l e were s i m i l a r t o FAD s c o r e s g e n e r a t e d f r o m a random s a m p l e c o n s i d e r e d by t h e a u t h o r s o f t h e FAD t o be d e s c r i p t i v e o f t h e g e n e r a l f a m i l y p o p u l a t i o n ( M i l l e r , B i s h o p , E p s t e i n , & K e i t n e r , 1 9 8 5 ) . A p o s i t i v e r e l a t i o n s h i p b e t w e e n w e l l d e v e l o p e d a d o l e s c e n t s e l f - c o n c e p t and p o s i t i v e f a m i l y f u n c t i o n i n g was n o t i n d i c a t e d ; most c o r r e l a t i o n s b e t w e e n t h e OSIQ a n d FAD s c a l e s w e r e n e g a t i v e . H e a l t h c a r e f o r a d o l e s c e n t s w i t h CF s h o u l d i n c l u d e a d d r e s s i n g t h e i r s e x u a l a n d b o d y a n d s e l f - i m a g e c o n c e r n s a n d p r o m o t i n g h e a l t h y f a m i l y f u n c t i o n i n g . F u r t h e r i n v e s t i g a t i o n o f s e l f - c o n c e p t a n d f a m i l y f u n c t i o n i n g f o r a d o l e s c e n t s w i t h CF i s w a r r a n t e d . iv T a b l e o f c o n t e n t s A b s t r a c t i i T a b l e o f C o n t e n t s i v L i s t o f T a b l e s v i A c k n o w l e d g e m e n t v i i C h a p t e r 1 I n t r o d u c t i o n t o t h e s t u d y 1 B a c k g r o u n d and s i g n i f i c a n c e o f t h e p r o b l e m 1 P r o b l e m s t a t e m e n t 6 P u r p o s e 6 D e f i n i t i o n o f t e r m s 6 A s s u m p t i o n s 7 L i m i t a t i o n s 8 C h a p t e r 2 L i t e r a t u r e r e v i e w 9 O v e r v i e w 9 The d e v e l o p m e n t o f a d o l e s c e n t s e l f - c o n c e p t 9 S e l f - c o n c e p t a s an o r g a n i z a t i o n a l c o n s t r u c t 12 S e l f - c o n c e p t and C y s t i c F i b r o s i s 14 F a m i l y f u n c t i o n i n g 21 Summary 30 C h a p t e r 3 R e s e a r c h m e t h o d o l o g y 31 O v e r v i e w 31 S e l e c t i o n o f t h e s a m p l e 31 S u b j e c t s e l e c t i o n c r i t e r i a 31 S a m p l i n g t e c h n i q u e 32 S u b j e c t s ' r i g h t s 33 M e t h o d 34 D a t a c o l l e c t i o n i n s t r u m e n t s 34 The O f f e r S e l f - i m a g e Q u e s t i o n n a i r e 34 The F a m i l y A s s e s s m e n t D e v i c e 42 D a t a a n a l y s i s 48 Summary 51 C h a p t e r 4 R e s u l t s a n d d i s c u s s i o n 53 O v e r v i e w 53 R e s u l t s 53 D e s c r i p t i o n o f t h e s a m p l e 53 The O f f e r S e l f - i m a g e Q u e s t i o n n a i r e 57 The F a m i l y A s s e s s m e n t D e v i c e 63 V The r e l a t i o n s h i p o f s e l f - c o n c e p t a n d f a m i l y f u n c t i o n i n g 66 D i s c u s s i o n 69 The O f f e r S e l f - i m a g e Q u e s t i o n n a i r e 69 The F a m i l y A s s e s s m e n t D e v i c e 74 The r e l a t i o n s h i p o f s e l f - c o n c e p t a n d f a m i l y f u n c t i o n i n g 79 Summary . 8 1 C h a p t e r 5 Summary, c o n c l u s i o n s , i m p l i c a t i o n s , a n d r e c o m m e n d a t i o n s 82 Summary 82 C o n c l u s i o n s 85 I m p l i c a t i o n s f o r n u r s i n g 86 R e c o m m e n d a t i o n s f o r f u r t h e r r e s e a r c h 88 R e f e r e n c e s 91 A p p e n d i c e s A - L e t t e r o f I n f o r m a t i o n a n d C o n s e n t Forms 97 B - The O f f e r S e l f - i m a g e Q u e s t i o n n a i r e 100 C - A l p h a c o e f f i c i e n t s o f e a c h OSIQ s c a l e c l a s s i f i e d by age a n d s e x 108 D - D e m o g r a p h i c D a t a S h e e t 109 E - The F a m i l y A s s e s s m e n t D e v i c e 111 F - I n t e r n a l c o n s i s t e n c y a n d t e s t r e - t e s t c o e f f i c i e n t s o f t h e FAD 117 G - L e t t e r s o f p e r m i s s i o n f o r u s e o f c o p y r i g h t m a t e r i a l s 118 v i L i s t of Tables Table 1 Table 2 Table 3 Table 4 Table 5 Table 6 Table C -1 Frequencies and percentages of f a m i l y responses to the Demographic Data Sheet 55 OSIQ scores f o r ad o l e s c e n t s with CF ' 59 Mean OSIQ scores f o r ad o l e s c e n t s with CF c l a s s i f i e d by age and sex 61 Mean scores f o r the f i v e OSIQ Selves c l a s s i f i e d by age and sex 63 O v e r a l l mean FAD Scale s c o r e s , scores of a random sample, and suggested healthy c u t o f f scores f o r the FAD 65 Spearman rho c o r r e l a t i o n c o e f f i c i e n t s of s e l e c t e d FAD and OSIQ scores 67 Alpha c o e f f i c i e n t s of each OSIQ s c a l e c l a s s i f i e d by age and sex 108 Table F - l I n t e r n a l c o n s i s t e n c y and t e s t - r e t e s t c o e f f i c i e n t s f o r the FAD 117 A c k n o w l e d g e m e n t I w i s h t o s i n c e r e l y t h a n k my f r i e n d s , f a m i l y , a n d c o l l e a g u e s whose e n c o u r a g e m e n t , s u p p o r t , a n d g u i d a n c e h e l p e d me t o a c t u a l i z e t h i s p r o j e c t . T h i s t h e s i s i s d e d i c a t e d t o my p a r t n e r G e r r y , whose g e n t l e u n d e r s t a n d i n g a n d humor b a l a n c e d my s c h o l a r l y q u e s t . S p e c i a l t h a n k s a r e e x t e n d e d t o M a u r e e n o'Loane MSN, D r . G e o r g e D a v i d s o n , D r . L a w r e n c e Wong, a n d t h e p a t i e n t s a n d f a m i l i e s f r o m t h e BCCH CF C l i n i c who p a r t i c i p a t e d . F u n d i n g f r o m t h e C a n a d i a n N u r s e s ' R e s p i r a t o r y S o c i e t y o f t h e C a n a d i a n L u n g A s s o c i a t i o n f a c i l i t a t e d t h i s r e s e a r c h . The c o n s i d e r a b l e e x p e r t i s e o f P i n g Ma o f t h e S t a t i s t i c a l C o n s u l t i n g a n d R e s e a r c h L a b a t t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a was a p p r e c i a t e d . ' I am a l s o g r a t e f u l t o my c o m m i t t e e , R o b e r t a Hewat a nd C o n n i e Canam f o r t h e i r c o n t r i b u t i o n s t o t h i s p r o j e c t . 1 CHAPTER 1 I n t r o d u c t i o n t o t h e S t u d y B a c k g r o u n d a n d S i g n i f i c a n c e o f t h e P r o b l e m A d o l e s c e n c e i s a t i m e o f many c h a n g e s . The a d o l e s c e n t u n d e r g o e s a t u m u l t u o u s i n n e r o r g a n i z a t i o n o f n e e d s , a b i l i t i e s , s e l f - p e r c e p t i o n s , a n d s o c i o p o l i t i c a l p e r s p e c t i v e s w h i c h g r a d u a l l y c o m b i n e t o f o r m an a u t o n o m o u s i d e n t i t y ( A t w a t e r , 1 9 8 3 ; E r i k s o n , 1968; F r e u d , 1 9 0 5 ; M a r c i a , 1 9 6 7 ) . A c c o r d i n g t o M a r c i a t h i s i d e n t i t y f o r m a t i o n i s t h e s a l i e n t d e v e l o p m e n t a l t a s k o f a d o l e s c e n c e ( M a r c i a , 1 9 7 6 ) . E r i k s o n ( 1 9 6 8 ) v i e w s a d o l e s c e n c e a s a s t r e s s f u l t i m e f o r a d o l e s c e n t s a n d t h e i r f a m i l i e s . P a r e n t -a d o l e s c e n t c o n f l i c t s e merge a s a d o l e s c e n t s e x p e r i m e n t w i t h new b e h a v i o r s a s s o c i a t e d w i t h i n d e p e n d e n c e a n d s e x u a l i t y t h a t c h a l l e n g e p a r e n t a l a u t h o r i t y (Howe, 1 9 8 6 ) . T h e s e c o n f l i c t s f u n c t i o n t o m o t i v a t e a d o l e s c e n t s a n d t h e i r p a r e n t s t o e s t a b l i s h s e p a r a t e l i f e - s t y l e s ( M a r c i a , 1 9 7 6 ) . O f f e r , O s t r o v , a n d Howard ( 1 9 8 1 b ) h a v e d i f f e r e n t i d e a s a b o u t a d o l e s c e n t d e v e l o p m e n t . They v i e w n o r m a l a d o l e s c e n t i d e n t i t y d e v e l o p m e n t w i t h t h e o r g a n i z a t i o n a l c o n s t r u c t o f t h e s e l f - c o n c e p t . I n t h i s c o n t e x t s e l f -c o n c e p t r e f e r s t o " t h e p h e n o m e n a l v i e w o f t h e t o t a l s e l f r e l a t i n g t o t h e i n t e r n a l a n d e x t e r n a l e n v i r o n m e n t " ( p . 1 0 ) . A d o l e s c e n t s a n d t h e i r p a r e n t s u s u a l l y c o n g e n i a l l y a d a p t t o a d o l e s c e n t d e v e l o p m e n t a l c h a n g e s . H o w e v e r , 2 some adolescents with d i s a b i l i t i e s such as c y s t i c f i b r o s i s (CF) may experience d i f f i c u l t i e s i n t h e i r development of a s e l f - c o n c e p t (Offer et a l . , 1981b). Of f e r et a l . , (1981b) suggest that s e l f - e v a l u a t i o n and o r g a n i z a t i o n of the s e l f - c o n c e p t i s a s t r e s s f u l adjustment f o r adolescents with CF. According to Of f e r et a l . (1981b), adolescents with CF have more concerns than normal cohorts about t h e i r Sexual and S o c i a l Selves (Offer et a l . , 1981b). Others suggest that high l e v e l s of s t r e s s may n e g a t i v e l y a f f e c t the development of a s e l f - c o n c e p t i n adolescents with CF even more than the disease i t s e l f ( B e d e l l , G i o r d a n i , & Amour, 1977; Dorner, 1975). This s t r e s s occurs as the adolescents attempt to meet developmental t a s k s which t o them appear overwhelming ( B e d e l l et a l . , 1977). According to B e d e l l et a l . (1977), some areas of the a d o l e s c e n t s ' s e l f - c o n c e p t s f a i l t o develop normally because CF l i m i t s the a b i l i t i e s of the adoles c e n t s . Dorner (1975) concurs with B e d e l l et a l . and blames the p h y s i c a l l i m i t a t i o n s of CF as the reason f o r a d o l e s c e n t s ' d i f f i c u l t i e s i n development of t h e i r s e l f - c o n c e p t s . Dorner claims that the growth d e l a y s , r e s p i r a t o r y problems, and treatment regimes a s s o c i a t e d w i t h CF are v a r i a b l e s t h a t normal adolescents do not encounter i n t h e i r development of a s e l f - c o n c e p t . Thus, acc o r d i n g to Dorner, the d i f f i c u l t i e s adolescents with CF encounter i n the development of a s e l f - c o n c e p t stem 3 f r o m t h e i r e x p e r i e n c e w i t h CF. Some r e s e a r c h e r s s a y a d o l e s c e n t s w i t h CF e x p e r i e n c e d i f f i c u l t i e s i n t h e d e v e l o p m e n t o f s e l f -c o n c e p t ( B e d e l l e t a l . , 1 9 7 7 ; B o y l e , d i s a n t ' A g n e s e , S a c k , M i l l i c a n , & K u l c z y c k i , 1 976; D o r n e r , 1975; S t e i n h a u s e n & S c h i n d l e r , 1 9 8 1 ; T r a v i s , 1 9 7 6 ) . H o w e v e r , o t h e r s c l a i m t h a t t h e s e a d o l e s c e n t s c o p e s u r p r i s i n g l y w e l l w i t h t h e demands o f t h e i r d e b i l i t a t i n g d i s e a s e ( C o wan, C o r e y , Simmons, R o b e r t s o n , & L e v i s o n , 1984; L a n d o n , R o s e n f e l d , N o r t h c r a f t , & L e w i s t o n , 1 9 8 0 ; L e w i s t o n , 1980; S m i t h , G a d , & o ' G r a d y 1 9 8 3 ) . Though t h e s e v i e w s a p p e a r d i v e r g e n t two common t h e m e s o c c u r . The f i r s t i s t h e i m p o r t a n c e o f f a m i l y f u n c t i o n i n g on a d o l e s c e n t s ' s e l f - c o n c e p t d e v e l o p m e n t ( E p s t e i n , B a l d w i n , & B i s h o p , 1 9 8 3 ; O f f e r e t a l . , 1 9 8 1 b ; S m i t h e t a l . , 1 9 8 3 ) . The s e c o n d theme i s t h e a b i l i t y o f a d o l e s c e n t s w i t h CF and t h e i r f a m i l i e s t o a d a p t t o t h e s t r e s s f u l e x p e r i e n c e s a r i s i n g f r o m t h e i r d a i l y e x p e r i e n c e s w i t h a d e b i l i t a t i n g d i s e a s e ( B e d e l l e t a l . , 1 9 7 7 ; DeWet & C y w e s , 198 4 ; E p s t e i n e t a l . , 1 9 8 3 ; L a n d o n e t a l . , 1 9 8 0 ; L e w i s t o n , 1980; S m i t h e t a l . , 1 9 8 3 ) . A m e d i a t i n g v a r i a b l e on t h e amount o f s t r e s s e x p e r i e n c e d by a d o l e s c e n t s w i t h CF may be t h e s o c i a l s u p p o r t t h e y p e r c e i v e f r o m t h e i r f a m i l i e s ( c m i t h , e t a l . , 1 9 8 3 ) . How a f a m i l y f u n c t i o n s may be p a r t i c u l a r l y i m p o r t a n t b e c a u s e t h e t r e a t m e n t f o r CF demands h e a v y p a r e n t a l i n v o l v e m e n t . F a m i l i e s f a c e a d i l e m m a i n a t t e m p t i n g t o b a l a n c e t h e a d o l e s c e n t ' s n e e d f o r autonomy w i t h t h e demands o f t r e a t m e n t w h i c h i n c l u d e p h y s i o t h e r a p y , d i e t a r y , a n d m e d i c a t i o n r e g i m e s ( B u r t o n , 1 9 7 3 ) . S o m e t i m e s t h e d i s e a s e may be w e l l c o n t r o l l e d b y s t r i c t a d h e r e n c e t o t r e a t m e n t r e g i m e s , b u t t h e p e r s o n a l i t y o f t h e a d o l e s c e n t may be damaged ( D o c t e r , 1 9 7 3 ) . The f u n c t i o n i n g o f t h i s p o p u l a t i o n o f a d o l e s c e n t s w i t h CF a n d t h e i r f a m i l i e s i s w o r t h y o f i n v e s t i g a t i o n . The c l o s e c o n t a c t a d o l e s c e n t s w i t h CF h a v e w i t h t h e i r p a r e n t s may a m p l i f y t h e a l r e a d y i m p o r t a n t e f f e c t o f t h e f a m i l y on t h e d e v e l o p m e n t o f t h e a d o l e s c e n t ' s s e l f - c o n c e p t (DeWet & C y w e s , 1 9 8 4 ; O f f e r e t a l . , 1 9 8 1 b ) . A c c o r d i n g t o E p s t e i n , e t a l . ( 1 9 8 3 ) , f a m i l i e s who a r e r e a s o n a b l e a n d f l e x i b l e a r e more l i k e l y t o c o p e w i t h t h e demands o f a d o l e s c e n t d e v e l o p m e n t . W h i l e t h e r e s e a r c h e r was t h e h e a d n u r s e on t h e a d o l e s c e n t u n i t o f B r i t i s h C o l u m b i a C h i l d r e n ' s H o s p i t a l ( B C C H ) , s h e o b s e r v e d t h a t c a r i n g c o h e s i v e f a m i l i e s p r o m o t e d t h e d e v e l o p m e n t o f s e l f - c o n c e p t i n a d o l e s c e n t s w i t h CF. F a m i l i e s who b a l a n c e d e m p a t h i c s u p p o r t w i t h t h e p r o m o t i o n o f i n d e p e n d e n c e a p p e a r e d t o p o s i t i v e l y i n f l u e n c e t h e s e l f - c o n c e p t d e v e l o p m e n t o f t h e i r a d o l e s c e n t s . A d o l e s c e n t s f r o m t h e s e f a m i l i e s a p p e a r e d t o be h a p p i e r , more c o n f i d e n t , a n d l e s s a n x i o u s t h a n c o h o r t s w i t h CF f r o m d i s r u p t e d f a m i l i e s , p e r h a p s t h e a d o l e s c e n t s f r o m t h e c a r i n g c o h e s i v e f a m i l i e s f e l t s u p p o r t when t h e y n e e d e d i t , y e t w e r e e n c o u r a g e d t o be i n d e p e n d e n t . T h u s , t h e s e a d o l e s c e n t s w e r e a b l e t o t r y new r o l e s a s s o c i a t e d w i t h s e l f - c o n c e p t d e v e l o p m e n t ( e . g . , t e s t i n g p h y s i c a l a n d s e x u a l c a p a b i l i t i e s ) , w h i l e t h e i r n e e d s w e r e s u p p o r t e d by u n d e r s t a n d i n g p a r e n t s a n d o t h e r f a m i l y members. The r e l a t i o n s h i p o f f a m i l y f u n c t i o n i n g t o t h e d e v e l o p m e n t o f s e l f - c o n c e p t i n a d o l e s c e n t s w i t h CF i s n o t y e t u n d e r s t o o d . I f a r e l a t i o n s h i p c a n be d e m o n s t r a t e d b e t w e e n t h e two v a r i a b l e s i t w o u l d g i v e d i r e c t i o n t o n u r s i n g p r a c t i c e . N u r s e s c o u l d a s s e s s f o r s i g n s o f d i m i n i s h e d s e l f - c o n c e p t d e v e l o p m e n t i n a d o l e s c e n t s w i t h CF a n d f o r d i f f i c u l t i e s i n t h e • f u n c t i o n i n g o f f a m i l i e s o f a d o l e s c e n t s w i t h CF. I n t e r v e n t i o n s c o u l d be p l a n n e d t o h e l p t h e a d o l e s c e n t s a n d t h e i r f a m i l i e s t o b a l a n c e t h e n e e d s o f t r e a t m e n t w i t h t h e d e v e l o p m e n t a l n e e d s o f t h e a d o l e s c e n t . O t h e r i n t e r v e n t i o n s f o r a d o l e s c e n t s a n d f a m i l i e s c o u l d i n c l u d e t h e e d u c a t i o n o f a d o l e s c e n t s a n d p a r e n t s a b o u t n o r m a l g r o w t h and d e v e l o p m e n t , t h e p r o m o t i o n o f r e s p e c t i v e s u p p o r t g r o u p s f o r t h e s e a d o l e s c e n t s a n d t h e i r p a r e n t s , a n d a p p r o p r i a t e r e f e r r a l o f t h e a d o l e s c e n t s a n d / o r t h e i r f a m i l y members t o o t h e r h e a l t h c a r e p r o f e s s i o n a l s i f w a r r a n t e d . The v a r i a b l e o f f a m i l y f u n c t i o n i n g a s i t r e l a t e s t o t h e d e v e l o p m e n t o f s e l f - c o n c e p t i n a d o l e s c e n t s w i t h CF was i n v e s t i g a t e d i n t h i s s t u d y . P r o b l e m S t a t e m e n t F a m i l y f u n c t i o n i n g may i m p a c t on t h e d e v e l o p m e n t o f s e l f - c o n c e p t i n a d o l e s c e n t s w i t h CF. I n o r d e r t o i n v e s t i g a t e t h i s p r o b l e m i t must be d e t e r m i n e d w h e t h e r a r e l a t i o n s h i p e x i s t s b e t w e e n f a m i l y f u n c t i o n i n g and t h e s e l f - c o n c e p t d e v e l o p m e n t o f a d o l e s c e n t s w i t h CF. P u r p o s e The p u r p o s e o f t h i s s t u d y was t h r e e f o l d : t o d e s c r i b e t h e s e l f - c o n c e p t o f a d o l e s c e n t s w i t h CF who a t t e n d e d t h e CF C l i n i c a t BCCH; t o d e s c r i b e how t h e f a m i l i e s o f t h e s e a d o l e s c e n t s f u n c t i o n ; and t o d e t e r m i n e i f a r e l a t i o n s h i p e x i s t s b e t w e e n f a m i l y f u n c t i o n i n g a n d t h e d e v e l o p m e n t o f s e l f - c o n c e p t i n a d o l e s c e n t s w i t h CF. D e f i n i t i o n o f Terms i n t h e s t u d y C y s t i c F i b r o s i s - i s a m u l t i s y s t e m g e n e t i c a u t o s o m a l r e c e s s i v e d i s e a s e w i t h a n i n c i d e n c e o f 1:1500 i n t h e C a u c a s i a n p o p u l a t i o n . P r o g r e s s i v e p u l m o n a r y and g a s t r o i n t e s t i n a l p r o b l e m s c h a r a c t e r i z e t h i s d i s e a s e . E x o c r i n e g l a n d s p r o d u c e t e n a c i o u s mucus w h i c h o b s t r u c t s o r g a n p a s s a g e s ( e . g . , b r o n c h i and t h e b i l i a r y t r a c t ) . E c c r i n e g l a n d s p r o d u c e s w e a t w i t h e l e v a t e d s o d i u m a n d c h l o r i d e l e v e l s ( S t r a u s s & W e l l i c h , 1 9 8 1 ) . A d o l e s c e n c e - i s a d e v e l o p m e n t a l s t a g e b e t w e e n c h i l d h o o d a n d a d u l t h o o d ( 1 3 - 1 9 y e a r s i n c l u s i v e ) . S e l f - c o n c e p t - i s t h e s u b j e c t i v e p s y c h o l o g i c a l w o r l d o f t h e i n d i v i d u a l a s r e l a t i n g t o t h e i n t e r n a l a nd 7 e x t e r n a l environment, i n c l u d i n g the f i v e domains of s o c i a l r o l e s , p s y c h o l o g i c a l i d e n t i t y formation, s e x u a l i t y , f a m i l y i d e n t i f i c a t i o n s , and coping a b i l i t i e s ( O f f e r et a l . , 1981b). Family f u n c t i o n i n g - r e f e r s to the f a m i l y ' s o p e r a t i n g s t y l e . I t i s a complex phenomenon o p e r a t i n g on t r a n s a c t i o n a l systemic p r o p e r t i e s . The f a m i l y system f u n c t i o n s as a whole, but can be s i m p l i f i e d by the e v a l u a t i o n of r o l e s , communication, problem s o l v i n g , a f f e c t i v e responsiveness and involvement, behavior c o n t r o l , and g e n e r a l f u n c t i o n i n g ( E p s t e i n et a l . , 1983). Family - r e f e r s to a group of i n d i v i d u a l s who share accommodation and g o a l s . A f a m i l y must i n c l u d e at l e a s t one n a t u r a l or adopted parent and one c h i l d . Assumptions The researcher approached t h i s study with the assumption that s u b j e c t s answered the q u e s t i o n n a i r e s i n an honest manner. The o r g a n i z a t i o n a l c o n s t r u c t f o r adolescent s e l f - c o n c e p t that was used i n t h i s study i n c l u d e s the f o l l o w i n g two assumptions: f i r s t , that the p s y c h o l o g i c a l awareness of the adolescent i s s u f f i c i e n t to p r o v i d e s e l f d e s c r i p t i o n ; and second, that though normal adolescents may l a g behind i n s e v e r a l areas of t h e s e l f - c o n c e p t , o t h e r s e l f - c o n c e p t a r e a s may be w e l l d e v e l o p e d ( O f f e r e t a l . , 1 9 8 1 b ) . L i m i t a t i o n s The r e s e a r c h e r a c k n o w l e d g e s t h e f o l l o w i n g l i m i t a t i o n s o f t h e s t u d y : 1. S u b j e c t s a l l a t t e n d e d t h e CF C l i n i c a t BCCH and t h e r e f o r e may n o t h a v e b e e n t r u l y r e p r e s e n t a t i v e o f t h e o v e r a l l p o p u l a t i o n o f a d o l e s c e n t s w i t h CF a n d t h e i r f a m i l i e s . 2. The 22 f a m i l i e s who r e s p o n d e d t o t h e s t u d y w e r e s e l f - a p p o i n t e d and w e r e n o t r e p r e s e n t a t i v e o f t h e o v e r a l l CF C l i n i c p o p u l a t i o n . 3. The s i z e o f t h e s a m p l e i n t h i s s t u d y was s m a l l , w h i c h l i m i t e d c o n f i d e n c e i n r e s u l t s . O n l y 38 f a m i l i e s w e r e a v a i l a b l e f o r s t u d y . I n a n a s s o c i a t i o n s e e k i n g s t u d y l a r g e n u m b e r s i m p r o v e p r e d i c t i v e v a l u e s ( W y l i e , 1 9 7 9 ) . 4. The s t r u c t u r e d f o r m a t o f t h e d a t a c o l l e c t i o n i n s t r u m e n t s may h a v e o m i t t e d s a l i e n t a s p e c t s o f t h e s u b j e c t s ' f a m i l y f u n c t i o n i n g a n d / o r t h e s e l f - c o n c e p t o f t h e a d o l e s c e n t s w i t h CF. 5. S e l f - a p p o i n t e d s u b j e c t s may h a v e r e s p o n d e d i n a s o c i a l l y d e s i r a b l e way b e c a u s e t h e y knew t h e r e s e a r c h e r . 6. S u b j e c t s ' r e s p o n s e s may a l s o h a v e b e e n b i a s e d due t o t h e i r e n t h u s i a s m i n t h e f i g h t a g a i n s t CF. CHAPTER 2 L i t e r a t u r e Review Overview The f o l l o w i n g l i t e r a t u r e review focuses on the major concepts which are s e l f - c o n c e p t , adolescence, c h r o n i c i l l n e s s , and f a m i l y f u n c t i o n i n g . The review i s d i v i d e d i n t o four s e c t i o n s : the development of adolescent s e l f - c o n c e p t , s e l f - c o n c e p t as an o r g a n i z a t i o n a l c o n s t r u c t , the e f f e c t of c h r o n i c i l l n e s s on s e l f - c o n c e p t , and f a m i l y f u n c t i o n i n g i n r e l a t i o n to c h r o n i c i l l n e s s . The Development of Adolescent Self-Concept H i s t o r i c a l l y , the term s e l f - c o n c e p t has been viewed as s i m i l a r to other terms such as self - e s t e e m , s e l f - i m a g e , and s e l f - a c c e p t a n c e . Self-concept and s e l f -image were o f t e n used interchangeably t o desc r i b e the p e r s o n a l i t y adjustment of the i n d i v i d u a l . Abramowitz, Peterson, and Schulenberg (1984) d i f f e r e n t i a t e between s e l f - c o n c e p t and sel f - e s t e e m i n the f o l l o w i n g way. "Self-concept d i f f e r s from self-e s t e e m s i n c e the former i s more m u l t i d i m e n s i o n a l , w h i l e s e l f - e s t e e m i n d i c a t e s a unid i m e n s i o n a l , g l o b a l measure of s e l f - a c c e p t a n c e " (pp.20-21). The seminal works of Sigmund Freud (1905) desc r i b e stages of human p e r s o n a l i t y or s e l f - c o n c e p t development (De L e v i t a , 1983). Freud (1905) and the psychoanalysts b e l i e v e that s e l f - c o n c e p t development progresses i n p r e d i c t a b l e c h r o n o l o g i c a l s t a g e s t o w a r d m a t u r i t y ( B i o s , 1 9 6 7 ; E r i k s o n , 1968; F r e u d , 1 9 5 8 ) . E a c h d e v e l o p m e n t a l s t a g e i n v o l v e s t h e r e s o l u t i o n o f a p a r t i c u l a r c o n f l i c t s u c h a s a d o l e s c e n t s ' s t r u g g l e f o r a u t o n o m y ( F r e u d , 1 9 5 8 ) , o r t h e a c c o m p l i s h m e n t o f a s e n s e o f a u t o n o m o u s i d e n t i t y ( E r i k s o n , 1 9 6 8 ; M a r c i a , 1 9 7 6 ) . R e s o l u t i o n o f t h e c o n f l i c t i m p l i e s d e v e l o p m e n t a l t a s k a c c o m p l i s h m e n t , and r e p r e s e n t s a more m a t u r e m a n i f e s t a t i o n o f b a s i c i n s t i n c t u a l a n d e n v i r o n m e n t a l f o r c e s ( F r e u d , 1 9 5 8 ) . R e s o l u t i o n o f t h i s s t r u g g l e f o r a u t o n o m y i n t h e a d o l e s c e n t r e s u l t s i n i n c r e a s e d c o g n i t i v e a n d e m o t i o n a l a b i l i t i e s ( A d e l s o n & Doehrman, 1 9 8 0 ) . S e l f - c o n c e p t d e v e l o p m e n t i s d e t e r m i n e d b y p a s t a n d p r e s e n t d e v e l o p m e n t a l t a s k s ( R o t h m a n , 1 9 7 8 ) . T h u s , a d o l e s c e n t s who r e s o l v e e a r l i e r d e v e l o p m e n t a l c o n f l i c t s a n d r e l a t e d t a s k s a r e more l i k e l y t o r e s o l v e t h e i d e n t i t y c o n f l i c t o f a d o l e s c e n c e and d e v e l o p h e a l t h y s e l f - c o n c e p t s ( E r i k s o n , 1968 ; M a r c i a , 1 9 6 7 ) . P s y c h o a n a l y s t s s t r e s s t h e i m p o r t a n c e o f f a m i l y i n t e r a c t i o n on t h e d e v e l o p i n g c h i l d ' s s e l f - c o n c e p t ( E r i k s o n , 1968 ; F r e u d , 1 9 5 8 ; F r e u d , 1 9 0 5 ) . T h e y f o c u s on t h e i m p a c t o f t h e f a m i l y on t h e c h i l d ' s s o c i a l i z a t i o n , e s p e c i a l l y r e g a r d i n g t h e r e s o l u t i o n o f d e v e l o p m e n t a l c o n f l i c t s . P s y c h o a n a l y s t s c l a i m t ^ a t a d o l e s c e n t - p a r e n t c o n f l i c t i s a d e v e l o p m e n t a l m e c h a n i s m s i m i l a r t o m e c h a n i s m s o f o t h e r s t a g e s a s d e s c r i b e d b y P i a g e t ( 1 9 3 5 ) . F o r e x a m p l e , t o d d l e r s b a l a n c e t h e i r e x p l o r a t i o n s with p r o x i m i t y to mother. In a s i m i l a r way, adolescents balance t h e i r quest f o r independence with f a m i l i a l support. The adolescent's need f o r autonomous s e l f - c o n c e p t development and f l u c t u a t i o n s i n r e s p o n s i b i l i t y sometimes produce a d o l e s c e n t - f a m i l y c o n f l i c t (DeLevita, 1983; Howe, 1986). According to Marcia (1967), r e s o l u t i o n of a d o l e s c e n t - f a m i l y c o n f l i c t i s necessary f o r the adolescent's development of an autonomous s e l f -concept. The adolescent "must i n c o r p o r a t e new a b i l i t i e s i n t o a c o n s i s t e n t u n i t y " (Manaster, 1977) and t h i s demands change that may be d i f f i c u u l t f o r the adolescent and f a m i l y to accept. Increased adolescent p h y s i c a l , mental, and sexual a b i l i t i e s c a l l f o r new freedom, but "the adolescent does not r e l i a b l y d i s p l a y r e s p o n s i b l e ad u l t behavior", thus f r u s t r a t i n g a d o l e s c e n t - f a m i l y r e l a t i o n s h i p s (Howe, 1986, p. 304). The way that adolescents and t h e i r f a m i l i e s overcome developmental c o n f l i c t s i n f l u e n c e s the q u a l i t y of s e l f - c o n c e p t development f o r the adolescent ( E r i k s o n , 1968; Offer et a l . , 1981b). E r i k s o n (1968) and Freud (1958) emphasize the importance of adolescence as a time of tumultuous adjustment f o r the i n d i v i d u a l and f a m i l y . However, h i s t o r i c a l s c r u t i n y r e v e a l s t h a t the foundations f o r E r i k s o n and Freud's d e s c r i p t i o n s of adolescent s e l f -concept development are shaky. They base t h e i r ideas about adolescent s e l f - c o n c e p t development on d e s c r i p t i v e observations of p s y c h i a t r i c p a t i e n t s (DeLevita, 1983). Consequently/ they n e i t h e r d e s c r i b e what the development of a normal adolescent s e l f - c o n c e p t i s l i k e nor how i t might be measured. Self-concept as an O r g a n i z a t i o n a l Construct D a n i e l O f f e r (1969), an adolescent p s y c h i a t r i s t from Chicago, I l l i n o i s , found i t d i f f i c u l t to accept the p r e v a i l i n g p s y c h o a n a l y t i c ideas regarding development of a s e l f - c o n c e p t i n adolescence. As i n d i c a t e d e a r l i e r , t h e o r i s t s b e l i e v e d that t u r m o i l was necessary to motivate the adolescent and f a m i l y to move away from each other i n order to meet the emerging p h y s i c a l , emotional, v o c a t i o n a l and s e x u a l needs of the adolescent ( E r i k s o n , 1968; Freud, 1958; M a r c i a , 1967). The achievement of an autonomous i d e n t i t y , the s a l i e n t developmental task of adolescence, depends on the adolescent's s e p a r a t i o n from the f a m i l y ' s c o n t r o l . Adolescents who d i d not experience t u r m o i l were thought to have a p o o r l y developed s e l f - c o n c e p t . Though Of f e r (1969) thought adolescence r e q u i r e d change of the adolescent and f a m i l y , he b e l i e v e d that most adolescents and t h e i r f a m i l i e s experienced adolescence as a r e l a t i v e l y t r a n q u i l time i n which a l l f a m i l y members adapted to the adolescent's new a b i l i t i e s and to the changing r o l e s of f a m i l y members (Offer et a l . , 1981b). O f f e r (1969) wanted to t e s t h i s ideas about a d o l e s c e n c e b u t no i n s t r u m e n t f o r t h e d i s c e r n m e n t o f a v e r a g e , o r n o r m a l a d o l e s c e n t s e x i s t e d ( O f f e r e t a l . , 1 9 8 1 b ) . O f f e r ( 1 9 6 9 ) d e c i d e d t o d e v i s e a s e l f - c o n c e p t q u e s t i o n n a i r e . The O f f e r S e l f - i m a g e Q u e s t i o n n a i r e (OSIQ) ( O f f e r e t a l . , 1981b) d e s c r i b e s f i v e S e l v e s , o r d o m a i n s , a s r e p r e s e n t a t i v e o f t h e e l e v e n c o n t e n t a r e a s o f t h e s e l f -c o n c e p t ( s c a l e s ) . The f i v e S e l v e s a r e : p s y c h o l o g i c a l , S o c i a l , F a m i l i a l , S e x u a l , a n d C o p i n g S e l v e s ( p . l ) . S e l e c t i o n o f t h e i t e m s f o r t h e e l e v e n s c a l e s r e f l e c t s t h e a d a p t a t i o n ( M u r r a y , 1 9 3 8 ; , C o l e m a n , 1 9 6 1 ; S i l b e r , Hamburg, C o e l h o , M u r p h e y , R o s e n b u r g , & P e a r l i n , 1 9 6 1 ) , a n d p s y c h o a n a l y t i c u n d e r p i n n i n g s o f O f f e r ' s f r a m e w o r k f o r a d o l e s c e n t s e l f - c o n c e p t ( E r i k s o n , 1950; F r e u d , 1958; R a u c h & S w e e t , 1 9 6 1 ) . T h i s d u a l i t y o f a p p r o a c h t o t h e m e a s u r e m e n t o f a d o l e s c e n t s e l f - c o n c e p t a s e v i d e n t i n t h e OSIQ a l l o w s f o r t h e e v a l u a t i o n o f t h e a d o l e s c e n t f r o m a b r o a d p e r s p e c t i v e . T h e r e f o r e , t h e OSIQ i s a p o p u l a r m e t h o d f o r t h e a s s e s s m e n t o f a d o l e s c e n t s e l f - c o n c e p t . The p r o v i s i o n o f n o r m a l r e f e r e n c e g r o u p s ' s c o r e s f r o m a l a r g e number o f a d o l e s c e n t s (N=15,000) a l l o w s f o r i n t e r g r o u p c o m p a r i s o n s o f a d o l e s c e n t s e l f - c o n c e p t ( O f f e r e t a l . , 1 9 8 1 b ) . S t u d i e s t h a t h a v e u s e d t h e OSIQ h a v e i n v e s t i g a t e d many v a r i a b l e s r e l a t e d t o a d o l e s c e n t s e l f - c o n c e p t . Two p a r t i c u l a r s t u d i e s , B a l k ( 1 9 8 3 ) and B r e n n a n and O ' L o i d e a n ( 1 9 8 0 ) , f o u n d t h e OSIQ u s e f u l i n t h e a s s e s s m e n t o f g r o u p s o f a d o l e s c e n t s . Balk (1983) administered the OSIQ to adolescents (N=33) who had r e c e n t l y experienced the death of a s i b l i n g . The s u b j e c t s a l l had scores w i t h i n the normal range of the OSIQ. The s u b j e c t s a l s o had a mean score on the Moral Scale almost two standard d e v i a t i o n s above the normal score of 50 (p. 151). Therefore, Balk concluded that h i s s u b j e c t s had gained moral i n s i g h t as par t of t h e i r a d a p t a t i o n to the death of t h e i r s i b l i n g s . Brennan and o'Loidean (1980) compared adolescents with p s y c h i a t r i c diagnoses such as s c h i z o p h r e n i a , d e p r e s s i o n , and adjustment r e a c t i o n s ( p s y c h i a t r i c adolescents) (N=115) to r e p o r t e d l y normal adolescents (N=845) from a highschool p o p u l a t i o n . The scores of the p s y c h i a t r i c adolescents were s t a t i s t i c a l l y s i g n i f i c a n t l y d i f f e r e n t from the scores of the highschool p o p u l a t i o n (values ranged from £ < .01 t o <.001) (p. 15). These d i f f e r e n c e s occurred on a l l OSIQ s c a l e s except Body and Self-image. The authors concluded that the OSIQ can d i s c r i m i n a t e between p s y c h i a t r i c and normal adolescent p o p u l a t i o n s . Self-concept and C y s t i c F i b r o s i s Debate e x i s t s over the q u a l i t y of s e l f - c o n c e p t development i n adolescents w i t h CF. Some f i n d i n g s i n d i c a t e t h a t adolescents w i t h CF experience d i f f i c u l t i e s w i t h development of s e l f - c o n c e p t (Boyle et a l . , 1976; D a n i e l , 1977; O f f e r et a l . , 1981b; Steinhausen & S h i n d l e r , 1981) w h i l e others c l a i m that adolescents with CF develop normal s e l f - c o n c e p t s (Cowan et a l . , 1984; Landon et a l . , 1980; Lewis & Khaw, 1982; LewisLon, 1980; Smith et a l . , 1983). O f f e r et a l . (1981b) compared the OSIQ scores of p h y s i c a l l y i l l adolescents with severe acne, kidney d i s e a s e , growth d e l a y s , and CF to those with p s y c h i a t r i c diagnoses such as adjustment r e a c t i o n s , s c h i z o p h r e n i a , and depression. Both of these groups were a l s o compared with delinquent and normal adole s c e n t s . Findings revealed that p h y s i c a l l y i l l a d o l e s c e n t s , i n c l u d i n g those with CF, had s i g n i f i c a n t l y more concerns than normal cohorts about t h e i r Body and Self-image (£ <.05) (p.77). A l s o O f f e r et a l . d e s c r i b e the p h y s i c a l l y i l l a dolescents as having more s e x u a l l y c o n s e r v a t i v e a t t i t u d e s than normal cohorts (£ <.05). These f i n d i n g s were i n t e r p r e t e d by O f f e r et a l . to i n d i c a t e that adolescents with p h y s i c a l i l l n e s s e s experience d i f f i c u l t i e s w ith s e l f - c o n c e p t development but they a d j u s t t o and/or overcome these d i f f i c u l t i e s and adapt as w e l l as p o s s i b l e c o n s i d e r i n g t h e i r d i s a b i l i t i e s . Other authors a l s o c l a i m that adolescents with CF experience d i f f i c u l t i e s w ith t h e i r development of a s e l f - c o n c e p t . These authors tend to focus on the worr i e s and problems of t h i s p o p u l a t i o n without accounting f o r the st r e n g t h s of the adolescents (Boyle et a l . , 1976; D a n i e l , 1977; Steinhausen & S c h i n d l e r , 1981; T r a v i s , 1976). However, i n c o n t r a s t , the second g r o u p o f a u t h o r s comment t h a t t h e a d a p t i v e c a p a c i t i e s o f a d o l e s c e n t s w i t h CF a r e e x c e p t i o n a l a s many seem t o c o p e w i t h t h e s e r i o u s d i s a b i l i t i e s c a u s e d by t h e i r d i s e a s e (Cowan e t a l . , 1 9 8 4 ; L a n d o n e t a l . , 1 9 8 0 ; L e w i s & Khaw, 1982 ; S m i t h e t a l . , 1 9 8 3 ) . T h o u g h t h e s e v i e w s a p p e a r d i v e r g e n t , two t h e m e s a r i s e f r o m t h e s e w o r k s . A l l a g r e e t h a t a d o l e s c e n t s w i t h CF f a c e d i f f i c u l t i e s i n t h e d e v e l o p m e n t o f t h e i r s e l f - c o n c e p t and t h a t a d a p t a t i o n t o t h e l i m i t a t i o n s o f CF i s p o s s i b l e . T r a v i s ( 1 9 7 6 ) d e s c r i b e s t h e r e s u l t s o f i n t e r v i e w s w i t h c h r o n i c a l l y i l l c h i l d r e n a n d t h e i r f a m i l i e s i n a b o o k . She n o t e s t h a t a d o l e s c e n t s w i t h CF s t r u g g l e w i t h t h e symptoms o f a d e b i l i t a t i n g d i s e a s e w i t h v a r y i n g d e g r e e s o f s u c c e s s . She e m p h a s i z e s t h e i m p a c t o f d i s e a s e i n d u c e d s t r e s s on many a r e a s o f a d o l e s c e n t d e v e l o p m e n t , s u g g e s t i n g t h a t t h e i l l n e s s and r e l a t e d d e p e n d e n c y d e p r i v e a d o l e s c e n t s o f n o r m a l e x p e r i e n c e s . C o n s e q u e n t l y , a s t r a i n on a d o l e s c e n t s e l f - c o n c e p t d e v e l o p s a n d d i f f i c u l t i e s i n t h e d e v e l o p m e n t o f s e l f - c o n c e p t may r e s u l t . T r a v i s d e s c r i b e s t h e d e p e n d e n c y a d o l e s c e n t s w i t h CF h a v e on t h e i r p a r e n t s f o r p h y s i c a l , e m o t i o n a l , a n d f i n a n c i a l s u p p o r t . D e p e n d e n c y i n h i b i t s t h e a d o l e s c e n t ' s n o r m a l m o t i v a t i o n t o become a u t o n o m o u s and c o n s o l i d a t e s f a m i l y r e l a t i o n s h i p s t h a t s h o u l d be r e a d y f o r d i s e n g a g e m e n t . T r a v i s ( 1 9 7 6 ) s t r e s s e s t h e i m p o r t a n c e o f t h e r o l e o f h e a l t h c a r e p r o f e s s i o n a l s i n h e l p i n g t h e s e a d o l e s c e n t s t o l i v e a s norma l ly as p o s s i b l e so tha t the impact o f d i sease r e l a t e d s t r e s s can be reduced. D a n i e l ' s (1977) views r e s u l t from h i s d e s c r i p t i v e s tudy of ado lescen t s w i t h CF (N=12). D a n i e l ' s c o n c l u s i o n s p a r a l l e l those o f T r a v i s but D a n i e l adds tha t ado lescen t s w i th CF l ack p r a c t i c e w i th the s e l f -concept area o f coping a b i l i t i e s . D a n i e l says t h i s r e s u l t s from the a d o l e s c e n t ' s dependency on parents and p a r e n t s ' r e l u c t a n c e to l e t the ado lescen t s experiment w i t h new behav iors and r o l e s . Boyle et a l . (1976) i d e n t i f y b o r d e r l i n e adjustment i n ado lescen t s w i t h CF (N=27). These adjustment d i f f i c u l t i e s i n the s e l f - c o n c e p t areas of body and s e l f - i m a g e , and i n t e r p e r s o n a l a b i l i t i e s were determined w i t h a p s y c h i a t r i c i n t e r v i e w and three p r o j e c t i v e t e s t s . These were the Rorschach T e s t , the Thematic Appe rcep t ion Tes t , and the Draw-a-Person Test (p . 324) . In the p s y c h i a t r i c i n t e r v i e w s , 49% of sub jec t s r epor t ed problems w i t h d a i l y c o p i n g , 48% repor ted i n t e r p e r s o n a l and f a m i l y communication d i f f i c u l t i e s , and 70% expressed body and s e l f - i m a g e conce rns . High numbers i d e n t i f i e d a n x i e t y and dep res s ion as common for them (p. 325) . On the th ree p r o j e c t i v e t e s t s the r e s u l t s o f the sub j ec t s were cons ide r ed to i n d i c a t e tw ice as many d i f f i c u l t i e s w i t h development o f a s e l f - c o n c e p t as normal c o h o r t s . U n f o r t u n a t e l y , r e s u l t s except fo r those j u s t d e s c r i b e d are i n the form of d e t a i l e d case h i s t o r i e s . Therefore a n a l y t i c data does not support the a u t h o r s ' recommendations. They recommend tha t open communication between ado lescen t s w i t h CF and h e a l t h care p r o f e s s i o n a l s and between the ado lescen t s themselves c o u l d improve the development o f s e l f - c o n c e p t i n ado lescen t s w i t h CF. Boyle et a l . (1976) c l a i m tha t these types of communication c o u l d p o s i t i v e l y i n f l u e n c e development of s e l f - c o n c e p t by enhancing the cop ing a b i l i t i e s of the a d o l e s c e n t s . S te inhausen and S c h i n d l e r (1981) s t u d i e d male and female ado lescen t s w i th CF (N=36) fo r suspected d i f f i c u l t i e s i n development of s e l f - c o n c e p t and other areas of p s y c h o l o g i c a l h e a l t h such as i n t e r p e r s o n a l s k i l l s . R e s u l t s o f p s y c h i a t r i c i n t e r v i e w s found the CF sub j ec t s to be 45% more e m o t i o n a l l y upset than normal c o h o r t s . Subjec t s r epo r t ed s e l f - c o n c e p t d i f f i c u l t i e s i n coping and adjustment to the changes o f ado le scence . S te inhausen and S c h i n d l e r r e l a t e d the s e l f - c o n c e p t d i f f i c u l t i e s o f the sub j ec t s to p h y s i c a l d i s t u r b a n c e s such as lung f u n c t i o n (p =.05) (p . 76 ) . A l s o , the authors r epor ted d i f f i c u l t i e s w i t h f a m i l y f u n c t i o n i n g d i f f i c u l t i e s (p . 77) which are d e s c r i b e d i n the next s e c t i o n o f t h i s r e v i e w . A number o f authors suggest t ha t ado lescen t s w i t h CF exper ience normal s e l f - c o n c e p t development and have remarkable adap t ive c a p a c i t i e s c o n s i d e r i n g the s e r i o u s n a t u r e o f t h e i r d i s a b i l i t i e s (Cowan e t a l . , 1984; L a n d o n e t a l . , 1 980; L e w i s & Khaw, 1 9 8 2 ; L e w i s t o n , 1 9 8 0 ; S m i t h e t a l . , 1 9 8 3 ) . T h e y m a i n t a i n t h a t a d o l e s c e n t s w i t h CF s u c c e s s f u l l y a d a p t t o t h e many l i m i t a t i o n s a n d s t r e s s e s o f CF i n c l u d i n g : r e d u c e d l i f e e x p e c t a n c y , g r o w t h d e l a y s , o b v i o u s p h y s i c a l d i f f e r e n c e s f r o m p e e r s , h o s p i t a l i z a t i o n s , d a i l y p h y s i o t h e r a p y , m e d i c a t i o n , a n d d i e t a r y r e g i m e s . T h i s g r o u p o f a u t h o r s d e s c r i b e t h e c o n c e r n s o f a d o l e s c e n t s w i t h CF a s " v e r y r e a s o n a b l e c o n s i d e r i n g t h e amount o f d i s a b i l i t y t h e a d o l e s c e n t s w i t h CF e n c o u n t e r " ( L e w i s t o n , 1 9 8 0 , p . 2 6 6 ) . A p o s i t i v e theme u n i t i n g t h e s e w o r k s i s e m p h a s i s on t h e a d a p t i v e c o p i n g c a p a c i t i e s o f t h e a d o l e s c e n t s . T h e s e a u t h o r s recommend t h a t h e a l t h c a r e p r o f e s s i o n a l s c a n p r o m o t e t h e c o p i n g a b i l i t i e s a n d s e l f - c o n c e p t d e v e l o p m e n t o f a d o l e s c e n t s w i t h C F , w i t h m e a s u r e s s u c h a s : e d u c a t i o n a b o u t g r o w t h a n d d e v e l o p m e n t , f o r m a t i o n o f p a t i e n t s u p p o r t g r o u p s , a n d p r o v i s i o n o f s o c i a l s u p p o r t s t r u c t u r e s ( e . g . , a d o l e s c e n t c l i n i c s ) . S m i t h e t a l . , ( 1 9 8 3 ) s t u d i e d t h e s e l f -c o n c e p t s and p e r c e p t i o n s o f s o c i a l s u p p o r t i n a g r o u p o f a d o l e s c e n t s w i t h CF ( N = 2 6 ) . They i n v e s t i g a t e d t h e s e w i t h t h e T e n n e s s e e S e l f - C o n c e p t Q u e s t i o n n a i r e ( T S C ) , a s o c i a l s u p p o r t q u e s t i o n n a i r e , a n d a s t r e s s q u e s t i o n n a i r e . The l a t t e r t w o w e r e d e v i s e d b y t h e a u t h o r s ( p . 2 3 1 ) . S m i t h e t a l . ( 1 9 8 3 ) c l a i m t h a t t h e i r s a m p l e o f a d o l e s c e n t s h a d n o r m a l s e l f - c o n c e p t d e v e l o p m e n t a nd g e n e r a l l y h e a l t h y i n t e r p e r s o n a l r e l a t i o n s h i p s . Mean scores f o r s u b j e c t s on the TSC were w i t h i n the 30th p e r c e n t i l e of normal o v e r a l l . In a d d i t i o n , s u b j e c t s were w i t h i n the 90th p e r c e n t i l e of normal scores on the General Maladjustment Scale of the TSC. Smith et a l . i n t e r p r e t these scores to i n d i c a t e that the s u b j e c t s adapted to the s t r e s s of CF and developed h e a l t h y s e l f - c o n c e p t s . These authors a l s o found that the adolescents adapted to s t r e s s more e a s i l y , as demonstrated by t h e i r s u p e r i o r score on the s t r e s s q u e s t i o n n a i r e , and had b e t t e r TSC scores i f they perceived p o s i t i v e s o c i a l support from t h e i r f a m i l i e s , f r i e n d s , and h e a l t h care p r o f e s s i o n a l s . Though adolescents with CF appear adaptable, Smith et a l . remind others who work wi t h adolescents with CF not to overlook the d i f f i c u l t i e s these adolescents r e g u l a r l y face from t h e i r d e b i l i t a t i n g d i s e a s e . The adolescents s t i l l may need h e a l t h care support i n adapting to d i f f i c u l t experiences such as growth delays or rec u r r e n t h o s p i t a l i z a t i o n s . Smith et a l . ' s (1983) views p a r a l l e l those of others who c l a i m t h a t adolescents with CF have e x c e p t i o n a l adaptive c a p a c i t i e s which enable them to overcome the many l i m i t a t i o n s and s t r e s s e s a s s o c i a t e d w i t h CF (Landon et a l . , 1980; Lewis & Khaw, 1982; Lewiston, 1980). These authors do not th i n k adolescents w i t h CF always a d j u s t e a s i l y t o t h e i r problems. However,' t h e s e a u t h o r s p o s i t i v e comments a b o u t t h e s e l f - c o n c e p t d e v e l o p m e n t o f a d o l e s c e n t s w i t h CF r e f l e c t o p t i m i s m a b o u t t h e a d a p t i v e c a p a c i t i e s o f t h e a d o l e s c e n t s . F u r t h e r m o r e , t h e a u t h o r s s t r e s s t h a t e p i s o d i c and o n g o i n g s u p p o r t f r o m h e a l t h c a r e p r o f e s s i o n a l s , e m p a t h i c l i s t e n i n g , and g r o u p d i s c u s s i o n s c a n p r o m o t e d e v e l o p m e n t o f a s e l f - c o n c e p t i n t h e s e a d o l e s c e n t s . F a m i l y F u n c t i o n i n g E a c h f a m i l y ' s s t r u c t u r e a n d f u n c t i o n i n g p a t t e r n s a r e u n i q u e . T h e s e c o m p l e x p a t t e r n s o f f u n c t i o n i n g i n f l u e n c e c h i l d r e n t h r o u g h o u t t h e i r c h i l d h o o d y e a r s i n s u b t l e and c o m p l e x ways ( O l s e n , S p r e n k l e , & R u s s e l l , 1 9 7 9 ) . I n t h e p a s t d e c a d e a p l e t h o r a o f c o n c e p t s h a v e e m e r g e d t o d e s c r i b e v a r i a b l e s o f f a m i l y f u n c t i o n i n g . The number o f v a r i a b l e s i n v o l v e d make i t d i f f i c u l t t o i s o l a t e a n d d e s c r i b e f a m i l y f u n c t i o n i n g . H o w e v e r , r e c e n t i m p r o v e m e n t s i n a s s e s s m e n t t o o l s i n d i c a t e a p r o m i s i n g d i r e c t i o n f o r t h e e v a l u a t i o n o f f a m i l y f u n c t i o n i n g ( E p s t e i n e t a l . , 1 9 8 3 ) . I n t e r e s t i n t h e f u n c t i o n i n g o f f a m i l i e s w i t h a c h r o n i c a l l y i l l member i s r e l a t i v e l y new ( E p s t e i n e t a l . , 1 9 8 3 ) . H o w e v e r , f i n d i n g s f r o m a r e v i e w o f r e s e a r c h (DeWet & Cwyes, 1984) a n d a s t u d y ( L e w i s F, Khaw, 1982) p r o v i d e i n s i g h t i n t o f a m i l y f u n c t i o n i n g a n d CF. DeWet & Cwyes ( 1984 ) d e s c r i b e t h e p s y c h o s o c i a l i m p a c t o f CF u n d e r t h e f o l l o w i n g h e a d i n g s : p a r e n t a l r e s p o n s e s t o CF, m a r i t a l r e l a t i o n s h i p s i n f a m i l i e s w i t h CF, a n d e s p e c i a l l y t h e e f f e c t o f CF on f a m i l y f u n c t i o n i n g ( p p . 526 - 5 2 8 ) . R e s p e c t i v e l y t h e i r c o n c l u s i o n s were t h a t : m o t h e r s w e r e more i n v o l v e d i n t r e a t m e n t t h a n f a t h e r s a n d b o t h p a r e n t s f e l t g u i l t y a b o u t p a s s i n g t h e d i s e a s e t o o f f s p r i n g , t h e s e p a r a t i o n / d i v o r c e r a t e was no h i g h e r f o r p a r e n t s o f CF c h i l d r e n t h a n f o r t h e g e n e r a l p o p u l a t i o n , a n d f a m i l y f u n c t i o n i n g was m i n i m a l l y i m p a i r e d b y r e s t r i c t e d t i m e , f i n a n c e s , and c o m m u n i c a t i o n ( p . 5 2 8 ) . The a u t h o r s c o n c l u d e " t h a t p a t i e n t s w i t h CF a n d t h e i r f a m i l i e s a r e s u b j e c t t o m a j o r s t r e s s e s , y e t many f u u n c t i o n w i t h o u t o b s e r v a b l e d y s f u n c t i o n " ( p . 5 2 6 ) . F u r t h e r m o r e , DeWet and Cwyes e m p h a s i z e t h a t t h e c o p i n g m e c h a n i s m s o f t h e f a m i l i e s n e e d t o be d e v e l o p e d t o p r e v e n t d y s f u n c t i o n w h i c h may r e s u l t f r o m l i v i n g w i t h t h e s t r e s s e s o f CF ( p . 5 3 0 ) . L e w i s a nd Khaw ( 1 9 8 2 ) i n v e s t i g a t e d f a m i l y f u n c t i o n i n g a s a m e d i a t i n g v a r i a b l e i n t h e s e l f - c o n c e p t d e v e l o p m e n t a nd b e h a v i o r o f a d o l e s c e n t s w i t h CF (N=31). M o t h e r s o f t h e a d o l e s c e n t s c o m p l e t e d t h e F a m i l y A s s e s s m e n t o f C o h e s i v e n e s s a n d Enmeshment S c a l e , (FACES 11) a f a m i l y f u n c t i o n i n g q u e s t i o n n a i r e ( O l s o n e t a l . , 1979) a n d a b e h a v i o r p r o b l e m c h e c k l i s t d e v i s e d by t h e a u t h o r s . R e s u l t s o f t h e f o r e g o i n g two t e s t s w e r e c o m p a r e d t o t h e a d o l e s c e n t s ' r e s p o n s e s t o t h e P i e r c e S e l f - C o n c e p t S c a l e . S u b j e c t s ' mean f a m i l y f u n c t i o n i n g a n d s e l f - c o n c e p t s c o r e s w e r e w i t h i n t h e r a n g e f o r n o r m a l s c o r e s . H o w e v e r , t h e s u b j e c t s r e p o r t e d a h i g h number o f b e h a v i o r p r o b l e m s (£ <.01). M u l t i -v a r i a t e r e g r e s s i o n a n a l y s i s f o u n d a s i g n i f i c a n t r e l a t i o n s h i p b e t w e e n e x t r e m e ( e . g . , r i g i d o r d i s e n g a g e d ) f a m i l y f u n c t i o n i n g a nd a d o l e s c e n t b e h a v i o r p r o b l e m s (£ =.001) ( p . 6 3 8 ) . L e w i s and Khaw t h e r e f o r e c o n c l u d e d t h a t most f a m i l i e s s u c c e s s f u l l y a d a p t t o t h e s t r e s s a s s o c i a t e d w i t h CF b u t t h a t f a m i l i e s w i t h e x t r e m e f u n c t i o n i n g a r e l i k e l y t o h a v e a d o l e s c e n t s w i t h p s y c h o s o c i a l d i f f i c u l t i e s s u c h a s b e h a v i o r p r o b l e m s . As i n d i c a t e d , i m p r o v e m e n t s i n a s s e s s m e n t t o o l s may be h e l p f u l i n t h e a s s e s s m e n t o f f a m i l y f u n c t i o n i n g . T o o l s f o r t h e a s s e s s m e n t o f f a m i l y f u n c t i o n i n g s h o u l d be b a s e d on " c l i n i c a l l y t e s t e d r e p u t a b l e t h e o r e t i c a l m o d e l s o f f a m i l y f u n c t i o n i n g " ( E p s t e i n e t a l . , 1 9 8 3 , p. 1 7 1 ) . The M c M a s t e r M o d e l o f F a m i l y F u n c t i o n i n g (MMFF) i s s u c h a m o d e l . The MMFF d e s c r i b e s t h e m u l t i d i m e n s i o n a l a s p e c t s o f f a m i l y l i f e a n d i s b a s e d on t h e p a t t e r n s o f h e a l t h y f u n c t i o n i n g f a m i l i e s ( E p s t e i n e t a l . , 1 9 8 3 ) . The m o d e l p o r t r a y s t h e f a m i l y a s a s y s t e m w h i c h f u n c t i o n s i n s i x e q u a l l y i m p o r t a n t d o m a i n s . I n e a c h d o m a i n a r a n g e o f f u n c t i o n i n g f r o m l e a s t t o most e f f e c t i v e i s d e s c r i b e d . The d o m a i n s a r e P r o b l e m s o l v i n g , C o m m u n i c a t i o n , R o l e s , A f f e c t i v e R e s p o n s i v e n e s s , A f f e c t i v e I n v o l v e m e n t , and B e h a v i o r C o n t r o l ( E p s t e i n e t a l . , 1 9 8 0 , p . 3 1 2 ) . A G e n e r a l F u n c t i o n i n g d o m a i n was a d d e d i n 1981 t o d e s c r i b e t h e f a m i l y ' s o v e r a l l h e a l t h o r p a t h o l o g y . The F a m i l y A s s e s s m e n t D e v i c e (FAD) i s t h e o p e r a t i o n a l i z a t i o n o f t h e MMFF ( E p s t e i n e t a l . , 1 9 8 3 ) . A c c o r d i n g t o B i s h o p , B a l d w i n , E p s t e i n , and K e i t n e r ( 1 9 8 4 ) , t h e r e s u l t s o f t h e FAD f r o m v a r i o u s s t u d i e s i n d i c a t e t h a t : c h r o n i c i l l n e s s may a f f e c t f a m i l y f u n c t i o n i n g ; a f a m i l y t h a t f u n c t i o n s w e l l f a c i l i t a t e s r e h a b i l i t a t i o n , and i m p a i r e d f a m i l y f u n c t i o n i n g may n e g a t i v e l y a f f e c t r e h a b i l i t a t i o n and p e r h a p s t h e d e v e l o p m e n t o f f a m i l y members ( p p . 3 0 5 - 3 2 1 ) . The f o l l o w i n g s t u d i e s u s e d t h e FAD t o i n v e s t i g a t e t h e e f f e c t o f c h r o n i c i l l n e s s on f a m i l y f u n c t i o n i n g : B i s h o p , E p s t e i n , K e i t n e r , M i l l e r , & S r i n i v a s e n , ( 1 9 8 6 a ) ; B i s h o p , G r e e n , C a n t o r , & T o r r e s i n ( i n p r e s s ) ; M i l l e r , B i s h o p , E p s t e i n , & K e i t n e r , ( 1 9 8 5 ) . M i l l e r e t a l . ( 1 9 8 5 ) c o m p a r e d f a m i l i e s i n c l u d i n g a number w i t h a p s y c h i a t r i c d i a g n o s i s o f a f f e c t i v e d i s o r d e r , p e r s o n a l i t y d i s o r d e r , d e p r e s s i o n , a n d s c h i z o p h r e n i a ( p s y c h i a t r i c f a m i l i e s ) t o s e l f - r e p o r t e d l y h e a l t h y f a m i l i e s ( p . 3 5 3 ) . P s y c h i a t r i c f a m i l i e s c o n s i s t e n t l y r e s p o n d e d a b n o r m a l l y t o a l l s c a l e s o f t h e FAD. The p s y c h i a t r i c f a m i l i e s h a v e 46% - 5 9 % r a n g e o f u n h e a l t h y s c o r e s and h e a l t h y f a m i l i e s h a v e a 1 9 . 4 % - 3 6 . 1 % r a n g e o f u n h e a l t h y s c o r e s on t h e FAD. The m o s t s i g n i f i c a n t d i f f e r e n c e s b e t w e e n t h e u n h e a l t h y s c o r e s o f p s y c h i a t r i c a n d h e a l t h y f a m i l i e s r e s p e c t i v e l y o c c u r r e d i n t h e a r e a s o f P r o b l e m S o l v i n g ( 5 6 % v s . 2 0 . 8 % ) , A f f e c t i v e R e s p o n s i v e n e s s ( 5 3 . 7 % v s . 2 0 . 8 % ) , a n d G e n e r a l F u n c t i o n i n g ( 5 9 % v s . 22.2%) (£ <.001). The p s y c h i a t r i c f a m i l i e s show d i s r u p t i o n s i n most a r e a s o f f a m i l y f u n c t i o n i n g a n d t h i s may h a v e a n e g a t i v e e f f e c t on t h e d e v e l o p m e n t o f c h i l d r e n ( T o n k i n , 1 9 8 2 ) . One s t u d y i n v e s t i g a t e d f a m i l y f u n c t i o n i n g a n d m a r i t a l s a t i s f a c t i o n o f f a m i l i e s w i t h a c h r o n i c a l l y i l l member ( B i s h o p e t a l . , 1 9 8 6 a ) . I n d i v i d u a l s w i t h d i s a b i l i t i e s f r o m s t r o k e s a n d t h e i r f a m i l i e s ( s t r o k e f a m i l i e s ) (N=22) c o m p l e t e d t h e FAD d u r i n g t h e i r f i r s t h o s p i t a l i z a t i o n . One y e a r l a t e r s u b j e c t s c o m p l e t e d t h e FAD a n d t h e m a r r i e d c o u p l e s c o m p l e t e d t h e L o c k e - W a l l a c e M a r i t a l S a t i s f a c t i o n S c a l e (LWMS) ( p . 4 3 7 ) . F i n a l l y , t h e i r s c o r e s w e r e c o m p a r e d t o c o m p i l e d n o r m a l s c o r e s f o r t h e FAD and t h e LWMS. The s t r o k e f a m i l i e s e x p e r i e n c e d c o n s i d e r a b l e v a r i a t i o n s i n t h e i r d a i l y r o u t i n e s , s u c h a s p h y s i o t h e r a p y , m e d i c a l a p p o i n t m e n t s , o c c a s i o n a l h o s p i t a l i z a t i o n s , m e d i c a t i o n s a n d home t r e a t m e n t s ( B i s h o p e t a l . , 1 9 8 6 a ) . The a u t h o r s s p e c u l a t e d t h a t t h e f o r e g o i n g w o u l d n e g a t i v e l y i m p a c t on t h e f a m i l i e s ' f u n c t i o n i n g . H o w e v e r , t h o u g h t h e FAD s c o r e s o f t h e s t r o k e f a m i l i e s w e r e l o w d u r i n g t h e f i r s t h o s p i t a l i z a t i o n , most f a m i l i e s r e s u m e d n o r m a l f u n c t i o n i n g w i t h i n one y e a r . Some o f t h e f a m i l i e s d i d n o t a l w a y s d e v e l o p a p p r o p r i a t e f u n c t i o n i n g t o d e a l w i t h t h e d a y t o d a y d i s r u p t i o n s o f c h r o n i c i l l n e s s b u t t h e i r r e s u l t s d i d n o t s i g n i f i c a n t l y a l t e r mean FAD s c o r e s f o r t h e s a m p l e . The s t r o k e c o u p l e s ' mean r e s u l t s on t h e LWMS m a t c h e d t h o s e o f a s i m i l a r c o n t r o l g r o u p w i t h no h e a l t h p r o b l e m s . T h e r e f o r e B i s h o p e t a l . c o n c l u d e d t h a t m a r i t a l s a t i s f a c t i o n was s i m i l a r f o r s t r o k e a n d h e a l t h y c o u p l e s . The e f f e c t o f f a m i l y d y s f u n c t i o n on t h e p e r s o n a l d e v e l o p m e n t o f f a m i l y members i s n o t c l e a r . H o w e v e r , t h i s t o p i c i s u n d e r s t u d y a n d f i n d i n g s w i l l s o o n be p u b l i s h e d ( B i s h o p , p e r s o n a l c o m m u n i c a t i o n , A p r i l 1 4, 1 9 8 7 ) . B i s h o p e t a l . ( i n p r e s s ) u s e d t h e FAD t o s t u d y t h e f u n c t i o n i n g o f f a m i l i e s w i t h a member who i s c h r o n i c a l l y i l l w i t h r h e u m a t o i d a r t h r i t i s ( r h e u m a t o i d a r t h r i t i s f a m i l i e s ) . T h e s e f a m i l i e s d i d n o t e x p e r i e n c e d y s f u n c t i o n i n f a m i l y f u n c t i o n i n g , a n x i e t y , o r d e p r e s s i o n any more t h a n h e a l t h y f u n c t i o n i n g f a m i l i e s e x c e p t d u r i n g t i m e s o f s t r e s s . H o w e v e r , t h e r h e u m a t o i d a r t h r i t i s f a m i l i e s r e t u r n t o n o r m a l o n c e t h e c r i s i s i s p a s t . When f a m i l y p r o b l e m s a r e n o t r e s o l v e d v a r i o u s m a l a d a p t i v e p a t t e r n s t a k e t h e i r p l a c e . T h e s e may become s t a n d a r d o p e r a t i n g p r o c e d u r e f o r t h e f a m i l y . F o r e x a m p l e , i n a f a m i l y w i t h a c h i l d w i t h CF t h e m o t h e r i s o f t e n deemed r e s p o n s i b l e f o r d a i l y home p h y s i o t h e r a p y , m e d i c a t i o n s , d i e t a r y a n d o t h e r t h e r a p e u t i c r o u t i n e s a n d a p p o i n t m e n t s a s w e l l a s h e r o t h e r f a m i l y r o l e r e s p o n s i b i l i t i e s ( T r a v i s , 1976). Some mothers and f a m i l i e s may be abl e to ad j u s t t h e i r f u n c t i o n i n g to meet these demanding r e s p o n s i b i l i t i e s with ease while others may not. As a r e s u l t , d y s f u n c t i o n may appear i n areas of f a m i l y f u n c t i o n i n g that would normally go w e l l (e.g., with r o l e r e s p o n s i b i l i t i e s ) . T h i s d y s f u n c t i o n may be due to f a t i g u e , a n x i e t y and/or other reasons (Bishop et a l . , 1986a). L i t e r a t u r e i n d i c a t e s that f a m i l y f u n c t i o n i n g i s l i k e l y to be d i s r u p t e d i n f a m i l i e s with c h r o n i c a l l y i l l c h i l d r e n (Barnard, 1976; Maccoby, 1978; Rose & Thomas, 1987; Turk, 1964). Maccoby (1978) notes that under c e r t a i n types o f l i f e s t r e s s e s such as exacerbations of i l l n e s s or d i v o r c e , parents may devote a l l t h e i r energy to the e s s e n t i a l s of l i f e (e.g., food and s h e l t e r ) . According to Maccoby, parents have l i t t l e or no energy l e f t f o r f o s t e r i n g the development of o f f s p r i n g l e t alone other f a m i l y f u n c t i o n i n g a c t i v i t i e s (e.g., maintaining the m a r i t a l r e l a t i o n s h i p ) . Based on t h i s o b s e r v a t i o n , Maccoby recommends that h e a l t h care p r o f e s s i o n a l s should f i r s t t r y to help f a m i l i e s with the e s s e n t i a l s of l i f e . When these needs are supported, some f a m i l i e s may r e t u r n t o h e a l t h y f u n c t i o n i n g . Other f a m i l i e s may s t i l l r e q u i r e support to help them i n promotion of f a m i l y f u n c t i o n i n g and f o s t e r i n g development of c h i l d r e n . In the case of ongoing d i f f i c u l t i e s i n f a m i l y f u n c t i o n i n g , s p e c i f i c i n s t r u c t i o n i n p a r e n t i n g s k i l l s a n d p a r e n t s u p p o r t g r o u p s a r e recommended ( M a c c o b y , 1 9 7 8 ) . R o s e a n d Thomas ( 1987 ) d e s c r i b e i n a book how t h e f u n c t i o n i n g o f f a m i l i e s w i t h c h r o n i c a l l y i l l c h i l d r e n may be e n d a n g e r e d due t o o n g o i n g s t r e s s r e s u l t i n g f r o m i l l n e s s . L i k e M a c c o b y , R o s e a n d Thomas c l a i m t h a t t h e f u n c t i o n i n g o f f a m i l i e s must be s u p p o r t e d f o r t h e w e l f a r e o f c h i l d r e n a n d a d o l e s c e n t s w i t h c h r o n i c i l l n e s s . U n l e s s f a m i l y s t r e s s i s r e d u c e d , p a r e n t s may n o t be a b l e t o p r o m o t e t h e d e v e l o p m e n t o f c h i l d r e n . L i k e l y a r e a s o f d i f f i c u l t y i n f a m i l y f u n c t i o n i n g a r e c o m m u n i c a t i o n , m a i n t e n a n c e o f d i s c i p l i n a r y p r a c t i c e s , a n d e m o t i o n a l a t t a c h m e n t s ( e . g . , a f f e c t i v e i n t e r a c t i o n ) . R o s e a n d Thomas recommend t h a t n u r s e s s h o u l d h e l p f a m i l i e s w i t h p r a c t i c a l i s s u e s s u c h a s f o o d , s h e l t e r , a n d a r r a n g e m e n t s f o r t r a v e l t o h e a l t h c a r e a p p o i n t m e n t s t o r e d u c e f a m i l y s t r e s s l e v e l s . R o s e a n d Thomas a l s o s u g g e s t t h a t t h e c o p i n g s t r a t e g i e s o f f a m i l i e s be s u p p o r t e d b y n u r s e s b e c a u s e u l t i m a t e l y t h e f a m i l i e s ' c o p i n g i s r e l a t e d t o s u c c e s s f u l a d a p t a t i o n o f c h i l d r e n . K a t h r y n B a r n a r d ( 1987 ) i n t h e i n t r o d u c t i o n t o t h e R o s e a n d Thomas book c l a i m s t h a t p r o m o t i o n o f p a r e n t -c h i l d i n t e r a c t i o n b y n u r s e s i s e x t r e m e l y i m p o r t a n t . B a r n a r d s a y s p a r e n t - c h i l d i n t e r a c t i o n i s t h e most v i t a l d e t e r m i n a n t o f c h i l d r e n ' s d e v e l o p m e n t e s p e c i a l l y f o r c h i l d r e n w i t h c h r o n i c i l l n e s s . I n an e a r l i e r book B a r n a r d e m p h a s i z e s t h a t : t h e p r o c e s s o f p a r e n t - c h i l d i n t e r a c t i o n i s i m p o r t a n t i n d e t e r m i n i n g c h i l d h e a l t h o u t c o m e s i n f a m i l i e s w i t h c h r o n i c a l l y i l l c h i l d r e n , f a m i l y f u n c t i o n i n g may o f t e n be i m p a i r e d by s t r e s s , n u r s e s ' u l t i m a t e g o a l i n c h i l d h e a l t h i s t o i d e n t i f y and i n t e r v e n e b e f o r e f a m i l y f u n c t i o n i n g i s s e r i o u s l y i m p a i r e d , and t h a t a m a j o r i s s u e f o r n u r s e s who work w i t h c h r o n i c a l l y i l l c h i l d r e n a n d t h e i r f a m i l i e s i s t h e s u p p o r t o f f a m i l y f u n c t i o n i n g ( B a r n a r d , 1 9 7 6 ) . F i n a l l y , a s t u d y by T u r k ( 1 9 6 4 ) d e t a i l s s p e c i f i c d i f f i c u l t i e s i n f a m i l y f u n c t i o n i n g f o r f a m i l i e s i n c l u d i n g a c h i l d w i t h CF. T u r k d e s c r i b e s how f a m i l i e s f r o m h i s s a m p l e (N=14) e x p e r i e n c e d d i f f i c u l t i e s s u c h a s : l i t t l e t i m e a n d money f o r a d u l t a c t i v i t i e s , r e s t r i c t i o n o f p a r e n t a l t i m e a l o n e , s c a n t t i m e o r money f o r f a m i l y r e c r e a t i o n , a n d most i m p o r t a n t l y , s e r i o u s d i f f i c u l t i e s w i t h f a m i l y c o m m u n i c a t i o n . T u r k r e f e r s t o t h e c o m m u n i c a t i o n d i f f i c u l t y a s a f a m i l y "web o f s i l e n c e " ( p . 6 7 ) . T h i s web o f s i l e n c e c a u s e s f a m i l y m i s u n d e r s t a n d i n g s , l a c k o f a f f e c t i v e i n v o l v e m e n t b e t w e e n f a m i l y members, a n d d i f f i c u l t i e s i n t h e d e v e l o p m e n t o f a s e l f - c o n c e p t f o r c h i l d r e n ( T u r k , 1 9 6 4 ) . 30 Summary Se l f - c o n c e p t was d e f i n e d and d i s c u s s e d from an developmental p e r s p e c t i v e . Next, s e l f - c o n c e p t was reviewed as a concept with emphasis on the O f f e r framework ( O f f e r et a l . , 1981b). The e f f e c t of c h r o n i c i l l n e s s such as CF on the development of s e l f - c o n c e p t was d i s c u s s e d . The concept of f a m i l y f u n c t i o n i n g was d e s c r i b e d with emphasis on s t u d i e s using the FAD. F i n a l l y , the e f f e c t of c h r o n i c i l l n e s s on f a m i l y f u n c t i o n i n g was reviewed. CHAPTER 3 Research Methodology Overview The r e l a t i o n s h i p between the s e l f - c o n c e p t of adolescents with CF and the f u n c t i o n i n g of t h e i r f a m i l i e s was i n v e s t i g a t e d with the use of two data c o l l e c t i o n instruments. The sample was obtained from the CF c l i n i c at BCCH. Twenty-two adolescents with CF and t h e i r f a m i l i e s v o l u n t e e r e d to p a r t i c i p a t e . The adolescents with CF completed a s e l f - c o n c e p t q u e s t i o n n a i r e (OSIQ), and the adolescents and some of t h e i r f a m i l y members (N=34) completed a f a m i l y f u n c t i o n i n g q u e s t i o n n a i r e (FAD). Responses to the OSIQ and FAD were then analyzed to determine whether the s u b j e c t s ' scores d i f f e r e d from the standard normal s c o r e s f o r the two q u e s t i o n n a i r e s . The Spearman rho c o r r e l a t i o n procedure was used to i n v e s t i g a t e r e l a t i o n s h i p s between the s c a l e s of the OSIQ and the FAD. The s e c t i o n s of t h i s chapter deal with the s e l e c t i o n of the sample f o r t h i s study, the c o l l e c t i o n of data, and the a n a l y s i s of data. S e l e c t i o n of the Sample Subject S e l e c t i o n C r i t e r i a S e l e c t i o n of the s u b j e c t s f o r t h i s study were based on the f o l l o w i n g c r i t e r i a : 1. f a m i l i e s i n c l u d e d an adolescent with CF between and i n c l u d i n g the ages of 13 and 19 yea r s , 2. f a m i l i e s i n c l u d e d at l e a s t one n a t u r a l or adopted parent, 3. f a m i l y members c o u l d read and w r i t e E n g l i s h , and 4. f a m i l i e s were not f a c i n g the impending death of any f a m i l y member. Sampling Technique A convenience sample of 38 f a m i l i e s with an adolescent with CF who attended the C y s t i c F i b r o s i s C l i n i c at BCCH met the s u b j e c t s e l e c t i o n c r i t e r i a and were asked to p a r t i c i p a t e i n the study. The adolescents who v o l u n t e e r e d to p a r t i c i p a t e came from i n t a c t , d i v o r c e d , and blended f a m i l i e s . The f a m i l i e s were from urban, suburban, and r u r a l areas of B r i t i s h Columbia. The names, addresses, and telephone numbers of the adolescent p a t i e n t s and t h e i r f a m i l y members were der i v e d from c l i n i c r ecords a f t e r the researcher obtained permission to use the CF C l i n i c p o p u l a t i o n for the study. The medical d i r e c t o r and the c l i n i c a l nurse s p e c i a l i s t provided i n f o r m a t i o n that i n d i c a t e d which f a m i l i e s met the subject, s e l e c t i o n c r i t e r i a of t h i s study. A c o n t r o l group was not u t i l i z e d i n t h i s study. However, the normal r e f e r e n c e group means and standard d e v i a t i o n s of the OSIQ ( O f f e r et a l . , 1981b) and FAD (E p s t e i n et a l . , 1983; M i l l e r et a l . , 1985) provided comparative data f o r a n a l y s i s . 33 S u b j e c t s ' R i g h t s The r i g h t s o f s u b j e c t s w e r e p r o t e c t e d by t h e r e s e a r c h e r a n d t h e e t h i c s c o m m i t t e e s o f t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a a nd B r i t i s h C o l u m b i a C h i l d r e n ' s H o s p i t a l ( B C C H ) . S u b j e c t s r e c e i v e d an e n v e l o p e by m a i l w h i c h c o n t a i n e d a w r i t t e n d e s c r i p t i o n o f t h e s t u d y i n c l u d i n g t h e r e s e a r c h e r ' s . e x p e c t a t i o n s o f p a r t i c i p a n t s a n d t h e c o n s e n t f o r m s ( A p p e n d i x A ) , t h e OSIQ ( A p p e n d i x B) and FAD q u e s t i o n n a i r e s ( A p p e n d i x E ) , a D e m o g r a p h i c D a t a S h e e t ( A p p e n d i x D ) , and a s t a m p e d e n v e l o p e a d d r e s s e d t o t h e r e s e a r c h e r . S u b j e c t s i n d i c a t e d t h e i r names on t h e i r c o m p l e t e d q u e s t i o n n a i r e s w h i c h f a c i l i t a t e d t h e r e s e a r c h e r ' s f o l l o w - u p p h o n e c a l l s t o n o n - r e s p o n d e n t s . To i n s u r e t h e s u b j e c t s ' a n o n y m i t y t h e D e m o g r a p h i c D a t a S h e e t and t h e q u e s t i o n n a i r e s w e r e c o d e d p r i o r t o d a t a a n a l y s i s . The r e s e a r c h e r g u a r a n t e e d s u b j e c t s i n t h e L e t t e r o f I n f o r m a t i o n t h a t t h e i r i d e n t i t y w o u l d be known o n l y t o t h e r e s e a r c h e r a n d t h a t d a t a w o u l d be g r o u p e d f o r a n a l y s i s a n d d i s c u s s i o n . A l l o f t h e s u b j e c t s ' r e s p o n s e s t o t h e s t u d y i n c l u d i n g c o n s e n t f o r m s , D e m o g r a p h i c D a t a S h e e t s , a n d OSIQ and FAD q u e s t i o n n a i r e s w e r e d e s t r o y e d a f t e r t h e c o m p l e t i o n o f t h e s t u d y . S u b j e c t s w e r e i n f o r m e d i n w r i t i n g t h a t t h e i r p a r t i c i p a t i o n o r n o n - p a r t i c i p a t i o n i n t h e s t u d y w o u l d n o t a f f e c t t h e i r h e a l t h c a r e s e s r v i c e s a t a n y t i m e . S u b j e c t s w e r e a l s o i n f o r m e d t h a t t h e i r p a r t i c i p a t i o n c o u l d make a c o n t r i b u t i o n to nursing theory. Advances i n theory could p o s i t i v e l y i n f l u e n c e the type of nursing care that adolescents w i t h CF and t h e i r f a m i l i e s r e c e i v e , thus i n d i r e c t l y h e l p i n g adolescents with CF and t h e i r f a m i l i e s . Method As i n d i c a t e d , the s u b j e c t s r e c e i v e d an envelope c o n t a i n i n g i n f o r m a t i o n about the study, consent forms, the data c o l l e c t i o n instruments, a Demographic Data Sheet, and a stamped envelope addressed to the researcher. Questions on a Demographic Data Sheet regarding the f a m i l y ' s socioeconomic s t a t u s , r e l i g i o n , r a c e , h e a l t h , and the p a r e n t s ' m a r i t a l s t a t u s were completed by one parent. Adolescents and t h e i r f a m i l y 1 members who chose to p a r t i c i p a t e i n the study returned the signed consent forms, the Demographic Data Sheet, and the q u e s t i o n n a i r e s t o the researcher i n the stamped pre-addressed envelope. Follow-up phone c a l l s were made to non-respondents two and f i v e weeks a f t e r the i n i t i a l m a i l i n g of the study m a t e r i a l s . Data C o l l e c t i o n Instruments The O f f e r Self-image Q u e s t i o n n a i r e . The OSIQ i s a s e l f - d e s c r i p t i v e p e r s o n a l i t y t e s t used to measure the p e r c e p t i o n s of s e l f - c o n c e p t of boys and g i r l s between and i n c l u d i n g 13 and 19 years of age. The Of f e r Self-image Questionnaire (OSIQ) (O f f e r et a l . , 1981b) i s p r i m a r i l y u s e f u l i n p r o v i d i n g a s t a n d a r d i z e d r e l i a b l e 35 means of gather i n g i n f o r m a t i o n about the s e l f - c o n c e p t development of v a r i o u s p o p u l a t i o n s of adolescents (p. 31). Thousands of adolescents from d i f f e r e n t c o u n t r i e s i n c l u d i n g Canada, the United S t a t e s , I r e l a n d , A u s t r a l i a , and I s r a e l have completed the OSIQ and i n doing so have "shared t h e i r knowledge about themselves with us and other researchers" (p. 30). Adolescents who complete the OSIQ (Offer et a l . , 1981b) u s u a l l y f i n d i t to be an opportunity f o r s h a r i n g t h e i r thoughts w i t h researchers (p. 30). This sharing occurs because adolescents "are t y p i c a l l y seeking t o e s t a b l i s h t h e i r own i d e n t i t i e s , and thus are i n t e n s e l y i n t e r e s t e d i n themselves. Adolescents as a group are p a r t i c u l a r l y w i l l i n g to share t h e i r inner experiences and p e r c e p t i o n s " (p. 30). This makes the OSIQ u s e f u l f o r e l i c i t i n g group and i n d i v i d u a l adolescent perceptions of s e l f - c o n c e p t (p. 31). Test items were chosen and grouped i n t o eleven s c a l e s thought to be important i n the p s y c h o l o g i c a l l i f e of adolescents on the b a s i s of t h e o r e t i c a l p r o p o s i t i o n s ( E r i k s o n , 1950; Freud, 1958; Mar c i a , 1967), e m p i r i c a l f i n d i n g s , and c l i n i c a l o b s e r v a t i o n s . Items were s e l e c t e d by Q-sort and then were checked f o r c l a r i t y i n d i s c u s s i o n w i t h a d o l e s c e n t s . A p i l o t study r e s u l t e d i n the rewording of some items ( O f f e r et a l . , 1981b). The q u e s t i o n n a i r e , comprised of 130 items, has eleven s c a l e s t h a t measure the p s y c h o l o g i c a l adjustment o f t h e a d o l e s c e n t ( O f f e r e t a l . , 1 9 8 2 ) . The s c a l e s a r e g r o u p e d i n t o f i v e s y s t e m s ; t h e S o c i a l , F a m i l i a l , S e x u a l , C o p i n g a n d P s y c h o l o g i c a l s e l v e s ( O f f e r e t a l . , 1 9 8 1 b ) . O f f e r e t a l ' s ( 1 9 8 1 b ) a n a l y s i s o f c o m p i l e d OSIQ d a t a r e s u l t e d i n a d e s c r i p t i o n o f t h e s e l f - c o n c e p t o f n o r m a l a d o l e s c e n t s . I n t h e same b o o k , t h e a u t h o r s d e s c r i b e l o w e r v a r i a t i o n s f r o m n o r m a l s e l f - c o n c e p t s c o r e s i n a d o l e s c e n t s who w e r e p s y c h i a t r i c p a t i e n t s , d e l i n q u e n t s , o r c h r o n i c a l l y i l l . L o wer v a r i a t i o n s f r o m n o r m a l s e l f - c o n c e p t s c o r e s f o r t h e c h r o n i c a l l y i l l o c c u r r e d on t h e OSIQ Body and S e l f - i m a g e and S e x u a l A t t i t u d e s S c a l e s ( p . 3 1 ) . The P s y c h o l o g i c a l S e l f ( P S ) , c o m p r i s e d o f t h r e e s c a l e s , r e f l e c t s t h e a d o l e s c e n t ' s c o n c e r n s , w i s h e s , f e e l i n g s , a n d f a n t a s i e s ( O f f e r e t a l . , 1 9 8 2 , p. 3 ) . The I m p u l s e C o n t r o l S c a l e m e a s u r e s t h e s t r e n g t h o f a d o l e s c e n t ' s s e l f - c o n t r o l o v e r t h e p r e s s u r e s o f t h e i n t e r n a l a n d e x t e r n a l e n v i r o n m e n t . A l o w s c o r e r e f l e c t s an i m p u l s i v e a d o l e s c e n t who h a s a l o w f r u s t r a t i o n t o l e r a n c e . A h i g h s c o r e i n d i c a t e s an a d o l e s c e n t who d e l a y s g r a t i f i c a t i o n . The E m o t i o n a l Tone S c a l e m e a s u r e s t h e a d o l e s c e n t ' s a b i l i t y t o m a i n t a i n e m o t i o n a l s t a b i l i t y d e s p i t e f l u c t u a t i o n s i n e m o t i o n s . A l o w s c o r e i n d i c a t e s u n h e a l t h y e m o t i o n a l l a b i l i t y , w h i l e a h i g h s c o r e i n d i c a t e s e m o t i o n a l s t a b i l i t y . The b o d y a n d S e l f - i m a g e S c a l e e v a l u a t e s t h e e x t e n t o f t h e 37 adolescent's adjustment to or awkward f e e l i n g s about the p h y s i c a l changes of adolescence. A high score i n d i c a t e s t h a t the adolescent has w e l l defined p h y s i c a l boundaries and f e e l s p h y s i c a l l y competent, while low scores i n d i c a t e the opposite (p. 3). The S o c i a l S e l f (SS)(Offer et a l . , 1982, p. 3) represents adolescent a t t i t u d e s about r e l a t i o n s h i p s w i t h peers and other s o c i a l contacts with three s c a l e s . The S o c i a l R e l a t i o n s h i p Scale measures the adolescent's o b j e c t r e l a t i o n s (e.g., attachment) and f r i e n d s h i p p a t t e r n s . A low score i n d i c a t e s that the adolescent f e e l s l o n e l y and i s o l a t e d , while a high score i n d i c a t e s s e c u r i t y and a c a p a c i t y f o r empathy. The Morals Scale evaluates the conscience of the adolescent. A low score suggests i r r e s p o n s i b l e d i s r e g a r d f o r others and a high score i n d i c a t e s r e s p o n s i b l e c a r i n g f o r others (e.g., empathy). The V o c a t i o n a l and Educational A t t i t u d e s Scale measures the adolescent's f e e l i n g s about school and career p l a n n i n g (p. 4). Adolescents w i t h high scores o f t e n do w e l l i n school and career p l a n n i n g . The Sexual S e l f (Ses) has one s c a l e , Sexual A t t i t u d e s , which evaluates the adolescent's a t t i t u d e s about s e x u a l i t y . A low score means the adolescent i s s e x u a l l y c o n s e r v a t i v e . A high score means that the adolescent has a " r e l a t i v e openness t o s e x u a l i t y " ( O ffer et a l . , 1982, p. 4). The F a m i l i a l S e l f ( F S ) h a s one s c a l e , F a m i l y A t t i t u d e s , w h i c h r e f l e c t s t h e a u t h o r s ' b e l i e f t h a t f a m i l y i n t e r a c t i o n i s a more i m p o r t a n t d e t e r m i n a n t o f s e l f - c o n c e p t t h a n a n y o t h e r s o c i a l v a r i a b l e ( O f f e r e t a l . , 1 9 8 1 b ) . Low s c o r e s on t h e F a m i l y A t t i t u d e s s c a l e i n d i c a t e d i f f i c u l t i e s i n c o m m u n i c a t i o n i n t h e f a m i l y a n d d i s s a t i s f a c t i o n w i t h d i s c i p l i n e p r a c t i c e s . H i g h s c o r e s i n d i c a t e p o s i t i v e f e e l i n g s a b o u t a d o l e s c e n t - p a r e n t c o m m u n i c a t i o n ( O f f e r e t a l . , 1 9 8 2 , p. 4 ) . The C o p i n g S e l f ( C S ) , w h i c h i s c o m p r i s e d o f t h r e e s c a l e s , f o c u s e s on t h e a d a p t i v e c a p a b i l i t i e s o f t h e a d o l e s c e n t and t h e c o p i n g b e h a v i o r s u s e d t o a d a p t t o t h e w o r l d . The M a s t e r y o f t h e E x t e r n a l W o r l d S c a l e m e a s u r e s t h e a d o l e s c e n t ' s a d a p t a t i o n t o t h e i m m e d i a t e e n v i r o n m e n t . Low s c o r e s i n d i c a t e a l a c k o f c o n f i d e n c e , and h i g h s c o r e s a s e n s e o f c o n f i d e n c e a n d c o n t r o l . The P s y c h o p a t h o l o g y S c a l e m e a s u r e s t h e r e l a t i v e m e n t a l h e a l t h o f t h e a d o l e s c e n t . Low s c o r e s mean t h e a d o l e s c e n t l i k e l y h a s m e n t a l h e a l t h p r o b l e m s , a n d h i g h s c o r e s mean t h e a d o l e s c e n t i s m e n t a l l y h e a l t h y . The S u p e r i o r A d j u s t m e n t S c a l e m e a s u r e s t h e q u a l i t y o f t h e a d o l e s c e n t ' s c o p i n g i n r e g a r d t o t h e s e l f , s i g n i f i c a n t o t h e r s , a n d t h e i r w o r l d . An a d o l e s c e n t w i t h a l o w s c o r e t e n d s t o e x p e r i e n c e d i f f i c u l t y c o p i n g , w h i l e h i g h s c o r e s i n d i c a t e a d a p t i v e c o p i n g . ( O f f e r e t a l . , 1 9 8 2 , p. 4 ) . T h e r e a r e two o p e r a t i o n a l a s s u m p t i o n s o f t h e OSIQ. F i r s t , i t e v a l u a t e s a d o l e s c e n t f u n c t i o n i n g i n m u l t i p l e a r e a s b e c a u s e a d o l e s c e n t s c o n s i d e r e d t o be d e v e l o p i n g i n t h e r e a l m o f n o r m a l c y may m a s t e r most a r e a s o f t h e s e l f -c o n c e p t w h i l e f a i l i n g t o p r o g r e s s i n one o r two. S e c o n d , i t a s s u m e s t h a t a d o l e s c e n t s h a v e s u f f i c i e n t s e l f - a w a r e n e s s t o p r o v i d e s e l f - d e s c r i p t i o n ( O f f e r e t a l . , 1 9 8 1 b ) . To c o m p l e t e t h e q u e s t i o n n a i r e , s u b j e c t s s e l e c t a n s w e r s f r o m a n u m e r i c a l r e s p o n s e f o r m a t o f s i x a l t e r n a t i v e s ( 1 t h r o u g h 6) t h a t i s p r i n t e d n e x t t o e a c h i t e m . R e s p o n s e s r a n g e f r o m 1 " d e s c r i b e s me v e r y w e l l " t o 6 "does n o t d e s c r i b e me a t a l l " . H a l f t h e i t e m s a r e p o s i t i v e l y w o r d e d and h a l f a r e n e g a t i v e l y w r i t t e n t o r e d u c e r e s p o n s e b i a s . An e x a m p l e o f a p o s i t i v e i t e m i s " I c a n c o u n t on my p a r e n t s most o f t h e t i m e " and a n e x a m p l e o f a n e g a t i v e i t e m i s " I f e e l I h a v e no t a l e n t w h a t s o e v e r " ( O f f e r e t a l . , 1 9 8 2 ) . I n s c o r i n g t h e OSIQ/ r e s p o n s e s t o n e g a t i v e l y w o r d e d i t e m s a r e r e f l e c t e d ( r e v e r s e d ) by s u b t r a c t i n g t h e n e g a t i v e v a l u e f r o m 7. F o r e x a m p l e , t h e r e s p o n s e v a l u e o f 6 f o r a n e g a t i v e i t e m becomes 1 a f t e r r e f l e c t i o n ( 7 -6 = 1 ) . A r e f l e c t e d s c o r e o f 1 i n d i c a t e s a w e l l d e v e l o p e d s e l f - c o n c e p t i n t h e a r e a e v a l u a t e d by t h e n e g a t i v e i t e m . P o s i t i v e i t e m r e s p o n s e v a l u e s a r e a c c e p t e d a t f a c e v a l u e w i t h 1 a s t h e b e s t s c o r e . Raw s c a l e s c o r e s a r e c a l c u l a t e d a s t h e sum o f t h e s u b j e c t ' s p o s i t i v e a nd r e f l e c t e d i t e m r e s p o n s e v a l u e s , d i v i d e d b y t h e number on t h a t s c a l e . As a r e s u l t , raw s c a l e s c o r e s c a n r a n g e f r o m one t o s i x t i m e s t h e number o f i t e m s i n a s c a l e . "A l o w s c o r e i m p l i e s p o s i t i v e d e v e l o p m e n t o f a s e l f - c o n c e p t i n t h e a r e a m e a s u r e d by a s c a l e and a h i g h s c o r e i m p l i e s p o o r a d j u s t m e n t i n t h a t a r e a " ( O f f e r e t a l . , 1 9 8 2 , p. 5 ) . The OSIQ s c o r i n g p r o c e d u r e n e x t u s e s a f o r m u l a t o s t a n d a r d i z e s c o r e s s o t h e y c a n be more e a s i l y u n d e r s t o o d , s t a n d a r d s c o r e s a r e g e n e r a t e d f r o m c o m p i l e d age and s e x - a p p r o p r i a t e n o r m a l r e f e r e n c e g r o u p ( e . g . , f e m a l e s f r o m 13 - 15 y e a r s i n c l u s i v e ) means a n d s t a n d a r d d e v i a t i o n s a s t a b u l a t e d i n t h e OSIQ M a n u a l ( O f f e r e t a l . , 1 9 8 2 ) . A s u b j e c t ' s s c a l e s c o r e i s s u b t r a c t e d f r o m t h e a p p r o p r i a t e r e f e r e n c e g r o u p mean. T h i s number i s d i v i d e d by t h e r e f e r e n c e g r o u p s t a n d a r d d e v i a t i o n . The q u o t i e n t i s m u l t i p l i e d by 15 a n d t h e n 50 i s a d d e d t o t h a t p r o d u c t . A s c o r e o f 50 i s e q u a l t o t h e r e f e r e n c e g r o u p mean ( s t a n d a r d m e a n ) . A s c o r e l o w e r t h a n 50 i s c o n s i d e r e d t o i n d i c a t e a l e s s w e l l d e v e l o p e d s e l f - c o n c e p t t h a n t h a t o f a n o r m a l a d o l e s c e n t . A s c o r e h i g h e r t h a n 50 i n d i c a t e s t h e s u b j e c t h a s a b e t t e r d e v e l o p e d s e l f -c o n c e p t t h a n t h a t o f a n o r m a l a d o l e s c e n t . A s c o r e o f 65 i s one s t a n d a r d d e v i a t i o n (SD=15) a b o v e t h e mean and a s c o r e o f 35 i s one s t a n d a r d d e v i a t i o n b e l o w t h e mean. The t o t a l s c o r e f o r t h e OSIQ i s d e t e r m i n e d b y summing t h e s c a l e s c o r e s a n d a v e r a g i n g t h i s sum by d i v i d i n g by t h e number o f s c a l e s ( e l e v e n ) . A s w i t h 41 s c a l e s c o r e s , a t o t a l OSIQ score of 50 equals the standard mean f o r a l l sex and age-appropriate reference groups. The r e l i a b i l i t y of the OSIQ has shown acceptable l e v e l s of i n t e r n a l c o n s i s t e n c y . O f f e r , Ostrov and Howard (1977) found alpha c o e f f i c i e n t s (Chronbach, 1971) f o r the eleven s c a l e s range from .43 to .73 (Appendix C). The OSIQ demonstrated s t a b i l i t y over time. The t e s t - r e t e s t c o e f f i c i e n t s of the eleven s c a l e s over a p e r i o d of s i x months range from .48 to .84 and are .73 f o r the t o t a l score ( o f f e r et a l . , 1981b). The v a l i d i t y of the OSIQ has been demonstrated i n f i n d i n g s from three s t u d i e s which provide estimates of concurrent v a l i d i t y f o r the OSIQ when compared to other instruments measuring s i m i l a r c o n s t r u c t s ( O f f e r , 1969; Coche & T a y l o r , 1974; H j o r t h , 1980). The instruments used f o r comparison were the B e l l Inventory, the Minnesota M u l t i p h a s i c P e r s o n a l i t y Inventory (MMPI), and the Tennessee Self-Concept Questionnaire (TSC). The OSIQ s c a l e s of Body and Self-image and Family A t t i t u d e s c o r r e l a t e most h i g h l y w i t h s i m i l a r s c a l e s of the TSC (Of f e r et a l . , 1981b). Coche and Taylor (1974) found moderate to high c o r r e l a t i o n s between many s c a l e s of the OSIQ and the MMPI. P r e d i c t i v e v a l i d i t y was demonstrated over an eig h t year p e r i o d i n a study of normal adolescent boys ( O f f e r , 1969). Subjects showed continued normal adjustment over k2 t h i s t i m e s p a n . C o n s t r u c t v a l i d i t y was a l s o s u p p o r t e d i n t h e same s t u d y i n t h e f o l l o w i n g way. " S u b j e c t s c h o s e n f o r t h e i r n o r m a l i t y on t h e b a s i s o f t h e i r OSIQ s c o r e s p r o v e d t o be c o n s i s t e n t l y n o n - d e v i a n t a n d n o n -p s y c h o p a t h o l o g i c a l o v e r an e i g h t y e a r p e r i o d " ( O f f e r e t a l . , 1 9 8 2 , p. 6 ) . N o r m a l a d o l e s c e n t s ' OSIQ s c o r e s a r e v a r i a b l e a n d s t i l l r e f l e c t h e a l t h y v a l u e s i f n i n e o f t h e s c a l e s c o r e s a r e a t o r a b o v e t h e s t a n d a r d mean s c o r e . The F a m i l y A s s e s s m e n t D e v i c e . The FAD i s a 60 i t e m s e l f - r e p o r t q u e s t i o n n a i r e d e s i g n e d t o m e a s u r e s i x d o m a i n s o f f a m i l y f u n c t i o n i n g a s d e s c r i b e d b y t h e M c M a s t e r M o d e l o f F a m i l y F u n c t i o n i n g (MMFF) a n d a n a d d i t i o n a l G e n e r a l F u n c t i o n i n g S c a l e . The MMFF " d e s c r i b e s t h e s t r u c t u r a l a n d o r g a n i z a t i o n a l p r o p e r t i e s o f f a m i l y g r o u p s a n d t h e p a t t e r n s o f t r a n s a c t i o n among f a m i l y members w h i c h h a v e b e e n f o u n d t o d i s t i n g u i s h b e t w e e n h e a l t h y a n d u n h e a l t h y f a m i l i e s " ( E p s t e i n e t a l . , 1 9 8 3 , p . 1 7 2 ) . The MMFF h a s b e e n u s e d i n c l i n i c a l work by E p s t e i n e t a l . ( 1 9 8 3 ) i n a f a m i l y c o u n s e l l i n g c o n t e x t , a n d i n e m p i r i c a l work ( M i l l e r e t a l . , 1 9 8 5 ) . I t e m s w e r e s e l e c t e d f r o m a 240 i t e m p o o l f o r t h e i r r e l a t i o n s h i p t o t h e s i x MMFF d o m a i n s o f f a m i l y f u n c t i o n i n g a n d r e s p e c t i v e l y g r o u p e d i n t o s c a l e s . Then a s e v e n t h G e n e r a l F u n c t i o n i n g S c a l e was a d d e d l a t e r t o m e a s u r e t h e o v e r a l l h e a l t h o f t h e f a m i l y . I t e m s w e r e a l s o c h o s e n f o r t h e i r i n t e r n a l c o n s i s t e n c y a s d e m o n s t r a t e d b y a s a m p l e o f (N=503) h e a l t h y a n d 43 u n h e a l t h y s u b j e c t s ( E p s t e i n et a l . , 1983, p . 176) . The seven FAD domains o f f a m i l y f u n c t i o n i n g a r e : Prob lem S o l v i n g , Communica t ion , R o l e s , A f f e c t i v e R e s p o n s i v e n e s s , A f f e c t i v e I n v o l v e m e n t , B e h a v i o r C o n t r o l , and G e n e r a l F u n c t i o n i n g . The f o l l o w i n g d e s c r i p t i o n o u t l i n e s c h a r a c t e r i s t i c s o f each FAD s c a l e . Problem S o l v i n g i s the a b i l i t y to r e s o l v e problems i n v o l v i n g i n s t r u m e n t a l ( e . g . , f i n a n c i a l ) and a f f e c t i v e ( e . g . , anger ) i s s u e s . The s c a l e f o c u s e s on the a s p e c t s o f f a m i l i e s t h a t a re most r e l a t e d t o members' w e l l b e i n g and e m o t i o n a l h e a l t h . H e a l t h y f a m i l i e s s o l v e problems e f f i c i e n t l y w h i l e at the o t h e r end of the s p e c t r u m , d i s t u r b e d f a m i l i e s can n e i t h e r i d e n t i f y nor r e s o l v e many o f t h e i r p r o b l e m s . Communicat ion r e f e r s t o how i n s t r u m e n t a l and a f f e c t i v e i n f o r m a t i o n , e s p e c i a l l y i n the v e r b a l mode, i s e x c h a n g e d . H e a l t h y f a m i l i e s communicate d i r e c t l y and c l e a r l y , w h i l e at the d i s t u r b e d end o f the s c a l e i t i s n e i t h e r c l e a r nor d i r e c t . R o l e s a re the r e p e t i t i v e p a t t e r n s of b e h a v i o r by which f a m i l y members f u l f i l l t h e i r f u n c t i o n s ( e . g . , n u r t u r a n c e and p e r s o n a l d e v e l o p m e n t ) . At the h e a l t h y end o f the s c a l e , a l l the n e c e s s a r y f u n c t i o n s a r e f u l f i l l e d , w h i l e at the d i s t u r b e d end one or more f u n c t i o n s may not be met. A f f e c t i v e R e s p o n s i v e n e s s r e f e r s to the f a m i l y ' s a b i l i t y t o respond to a v a r i e t y o f s t i m u l i w i th the a p p r o p r i a t e q u a l i t y and q u a n t i t y o f f e e l i n g s ( e . g . , l o v e a n d s a d n e s s ) . H e a l t h y f a m i l i e s r e g u l a r l y r e s p o n d w i t h a p p r o p r i a t e f e e l i n g s , w h i l e i n d i s t u r b e d f a m i l i e s o n e o r m o r e m e m b e r s d e m o n s t r a t e r e s p o n s i v e n e s s p r o b l e m s . A f f e c t i v e I n v o l v e m e n t r e f e r s t o t h e e x t e n t o f i n t e r e s t a n d v a l u e t h a t f a m i l y m e m b e r s h o l d f o r e a c h o t h e r . E m p a t h i c i n v o l v e m e n t c h a r a c t e r i z e s g o o d f u n c t i o n i n g , w h i l e d i s t u r b e d f a m i l i e s s h o w e i t h e r l a c k o f o r o v e r i n v o l v e m e n t . T h e B e h a v i o r C o n t r o l S c a l e e v a l u a t e s b e h a v i o r a l e x p e c t a t i o n s o f m e m b e r s ( e . g . , s o c i a l a n d p h y s i o l o g i c a l b e h a v i o r a n d m e t h o d s o f a c h i e v e m e n t o f t h e e x p e c t a t i o n s ) . H e a l t h i s g e n e r a l l y a s s o c i a t e d w i t h f l e x i b l e c o n s i s t e n c y , w h i l e d i s t u r b a n c e i s r e l a t e d t o c h a o t i c o r r i g i d p a t t e r n s . T h e G e n e r a l F u n c t i o n i n g S c a l e e v a l u a t e s t h e o v e r a l l h e a l t h a n d p a t h o l o g y o f t h e f a m i l y . T h i s s c a l e a s s e s s e s t h e p r e s e n c e o f t h e m e s among t h e o t h e r s c a l e s o f t h e FAD s u c h a s r i g i d i t y a n d e n m e s h m e n t ( M i l l e r e t a l . , 1 9 8 5 ) . F a m i l y m e m b e r s who r e s i d e t o g e t h e r i n d i v i d u a l l y a n d c o n f i d e n t i a l l y c o m p l e t e t h e q u e s t i o n n a i r e s . S u b j e c t s s e l e c t r e s p o n s e s f r o m a r a t i n g s c a l e o f f o u r a l t e r n a t i v e s t h a t i s p r i n t e d b e l o w e a c h i t e m . T h e w o r d i n g o f t h e r e s p o n s e s v a r i e s f r o m " s t r o n g l y a g r e e " t o " s t r o n g l y d i s a g r e e " . H a l f o f t h e i t e m s a r e p o s i t i v e l y w o r d e d a n d h a l f a r e n e g a t i v e l y w o r d e d t o r e d u c e r e s p o n s e b i a s . An e x a m p l e o f a p o s i t i v e i t e m i s "We r e s o l v e m o s t e v e r y d a y p r o b l e m s a r o u n d t h e h o u s e " . A n e x a m p l e o f a n e g a t i v e i t e m i s "We d o n ' t k n o w w h a t t o d o w h e n a n emergency comes up" ( E p s t e i n et a l . , 1983). According to E p s t e i n et a l . (1983), i t i s not necessary f o r a l l members to complete the FAD, t h e r e f o r e r e s u l t s must be viewed with c a u t i o n . In s c o r i n g of the FAD, f a m i l y mean s c a l e scores are c a l c u l a t e d by summing the f a m i l y ' s i n d i v i d u a l s c a l e scores and d i v i d i n g t h i s number by the number of fami l y members. Family mean s c a l e scores are compared to the standard c u t - o f f scores f o r normal healthy f a m i l i e s as i n d i c a t e d by compiled FAD data ( M i l l e r et a l . , 1985). According to M i l l e r et a l . (1985), s u b j e c t s ' f a m i l y mean s c a l e scores can a l s o be compared to the scores of a random sample of he a l t h y h o s p i t a l employees (N=45) i f res e a r c h e r s wish to compare s u b j e c t s to scores expected of the general p o p u l a t i o n . The FAD mean s c a l e scores of the s u b j e c t s of t h i s study as w e l l as the FAD scores of the random sample ( M i l l e r et a l . , 1985), and the suggested FAD healthy c u t - o f f scores appear i n Table 5. G e n e r a l l y , a s c a l e score of 2 i n d i c a t e s healthy f a m i l y f u n c t i o n i n g , while higher and lower scores r e s p e c t i v e l y s i g n i f y h e a l t h y and unhealthy f u n c t i o n i n g . It i s common f o r normally f u n c t i o n i n g f a m i l i e s to have a few s c a l e scores below the standard mean s c a l e score but most of the healthy f a m i l i e s ' FAD s c a l e scores are at or above the healthy c u t - o f f s c o r e s . F a m i l i e s with mostly low FAD s c a l e scores tend to be p o o r l y f u n c t i o n i n g f a m i l i e s ( M i l l e r et a l . , 1985). The r e l i a b i l i t y of the FAD i s d e s c r i b e d i n two a r t i c l e s by the authors ( E p s t e i n et a l . , 1983; M i l l e r et k6 a l . , 1985). The seven FAD s c a l e s have i n t e r n a l c o n s i s t e n c y alpha c o e f f i c i e n t s (Chronbach 1971) gre a t e r than .70 and range from .72 - .92 ( E p s t e i n et a l . , 1983, p. 175) (Appendix F ) . The seven s c a l e s of the FAD are moderately independent. This d i f f e r s from the psychometric t r a d i t i o n "which d i c t a t e s that s c a l e s of an instrument should be independent of each other. On the other hand, there i s no reason to t h i n k t h a t d i f f e r e n t aspects of f a m i l y f u n c t i o n i n g w i l l be d i f f e r e n t from each other. In f a c t we would expect problems i n one area of f a m i l y f u n c t i o n i n g t o have r a m i f i c a t i o n s i n other areas" ( E p s t e i n et a l . , 1983, p. 178). Therefore, the c o n s t r u c t o r s of the FAD b e l i e v e that t o t a l independence of s c a l e s i s an i l l o g i c a l demand of a f a m i l y assessment measure. However, the FAD s c a l e s are s u f f i c i e n t l y independent to be d i s t i n g u i s h a b l e (p. 178). T e s t - r e t e s t estimates f o r the FAD s c a l e s range from .66 to .76. These c o e f f i c i e n t s were obtained from r e p o r t e d l y h e a l t h y h o s p i t a l employees (N=45) a f t e r the d u r a t i o n of one week ( M i l l e r et a l . , 1985, p. 347). S o c i a l d e s i r a b i l i t y i s a f a c t o r which may a l t e r the r e l i a b i l i t y of responses to s e l f - r e p o r t q u e s t i o n n a i r e s ( W y l i e , 1979). E p s t e i n et a l . (1983) i n v e s t i g a t e d t h i s p o s s i b i l i t y w i t h the Marlowe-Crowne S o c i a l D e s i r a b i l i t y S c a l e . Randomly s e l e c t e d f a m i l i e s from a h o s p i t a l employee p o p u l a t i o n (N=72) completed the Marlowe-Crowne S o c i a l D e s i r a b i l i t y Scale and the FAD. c o e f f i c i e n t s between the t e s t s were low and ranged from -.06 t o -.19 47 (p. 346). T h e r e f o r e , E p s t e i n e t a l . (1983) concluded t h a t s o c i a l d e s i r a b i l i t y d i d not s i g n i f i c a n t l y a l t e r FAD r e s u l t s . V a l i d i t y of the FAD i s d e s c r i b e d by the authors ( E p s t e i n et a l . , 1983; M i l l e r e t a l . , 1985). The FAD demonstrates c o n c u r r e n t v a l i d i t y when compared with the Family U n i t Inventory (FUI) (Van der Veen & O l s o n , 1981). C o e f f i c i e n t s g r e a t e r than .5 o c c u r r e d f o r a l l FUI and FAD s c a l e p a i r s except f o r Behavior c o n t r o l and Gene r a l F u n c t i o n i n g (£ <.01) ( M i l l e r e t a l . , 1985). The FAD a l s o demonstrates d i s c r i m i n a t i v e v a l i d i t y as compared t o c l i n i c i a n s ' r a t i n g s o f a sample (N=22) of h e a l t h y and unhealthy f a m i l i e s a t c o r r e l a t i o n s of .64 and .67 r e s p e c t i v e l y . However, the sample s i z e of t h i s study was s m a l l . In a study of r e t i r e d c o u p l e s the FAD demonstrated p r e d i c t i v e and con c u r r e n t v a l i d i t y with two other i n s t r u m e n t s . These were the Locke-Wallace M a r i t a l S a t i s f a c t i o n S c a l e (LWMS) and the P h i l a d e l p h i a G e r i a t r i c Morale S c a l e (PGMS) ( E p s t e i n e t a l . , 1983). The FAD p r e d i c t e d 22% of the v a r i a n c e i n morale f o r wives as measured by the PGMS. Separate r e g r e s s i o n a n a l y s i s showed t h a t the FAD p r e d i c t e d 28% o f the v a r i a n c e o f m a r i t a l s a t i s f a c t i o n f o r both husbands and wives on the LWMS. "Thus, the measures [FAD, PGMS, and the LWMS] were a s s e s s i n g r e l a t e d phenomena" ( M i l l e r e t a l . , 1985). C o n s t r u c t v a l i d i t y i s i n d i c a t e d f o r the FAD because i t 48 "shows m o d e r a t e r e l a t i o n s h i p s t o o t h e r s i m i l a r f a m i l y t e s t s " ( M i l l e r e t a l . , 1 9 8 5 , p . 3 5 2 ) . D a t a A n a l y s i s D e s c r i p t i v e s t a t i s t i c s a r e p r i m a r i l y u s e d t o d e s c r i b e t h e v a r i a b l e s u n d e r s t u d y . They may a l s o be u s e d t o d e t e r m i n e r e l a t i o n s h i p s among v a r i a b l e s . I n t h i s s t u d y , t h e d e s c r i p t i o n s w e r e o f t h e s e l f - c o n c e p t o f a d o l e s c e n t s w i t h CF and o f t h e f u n c t i o n i n g w i t h i n t h e i r f a m i l i e s . The r e l a t i o n s h i p o f a d o l e s c e n t s e l f - c o n c e p t and f a m i l y f u n c t i o n i n g was d e t e r m i n e d by u s i n g t h e Spearman r h o c o r r e l a t i o n p r o c e d u r e . S u b j e c t s ' o v e r a l l a n d mean OSIQ s c a l e s c o r e s w e r e c o m p a r e d t o n o r m a l s t a n d a r d OSIQ s c o r e s a n d s t a n d a r d d e v i a t i o n s f o r t h e a p p r o p r i a t e s e x and age a s p r o v i d e d i n t h e OSIQ m a n u a l ( O f f e r e t a l . , 1 9 8 2 ) . S u b j e c t s ' mean s c a l e s c o r e s w e r e a l s o c o m p a r e d t o t h e s c o r e s o f o t h e r g r o u p s o f a d o l e s c e n t s ( n o r m a l , d e l i n q u e n t , o n c o l o g i c and a n o r e c t i c a d o l e s c e n t s ) w i t h t h e u s e o f p l o t g r a p h s . T h e s e g r a p h s c a n be u s e d t o r e p r e s e n t t h e OSIQ s c o r e s o f i n d i v i d u a l s o r g r o u p s o f a d o l e s c e n t s . The c o m p a r i s o n s b e t w e e n g r o u p s a r e o b v i o u s when d a t a a r e r e p r e s e n t e d i n t h i s f a s h i o n . I n t h i s s t u d y , t h e mean f a m i l y FAD s c a l e s c o r e s w e r e d e t e r m i n e d b y summing t h e s c o r e s o f a l l a f a m i l y ' s r e s p o n d e n t s f o r t h a t s c a l e a n d d i v i d i n g t h a t number by t h e number o f r e s p o n d e n t s i n t h a t f a m i l y . To p r o d u c e a mean FAD s c a l e s c o r e f o r t h e s a m p l e , t h e mean f a m i l y FAD s c a l e scores were averaged. These o v e r a l l mean FAD scores were compared to the healthy c u t - o f f scores f o r the FAD ( M i l l e r et a l . , 1985, p. 354). The s u b j e c t s ' mean FAD scores were a l s o compared to those of the randomized sample (N=45) of s e l f - r e p o r t e d l y h e a l t h y f a m i l i e s from a h o s p i t a l employee p o p u l a t i o n s t u d i e d by M i l l e r et a l . (1985). As suggested by M i l l e r et a l . (1985), the FAD scores of f a m i l i e s from the g e n e r a l p o p u l a t i o n may be s l i g h t l y lower than scores i n d i c a t i n g h e a l t h y f a m i l y f u n c t i o n i n g . T h e r e f o r e , the FAD scores of the s u b j e c t s of t h i s study were compared to suggested h e a l t h y FAD scores and the scores of the random sample. The s u b j e c t s ' o v e r a l l mean OSIQ and FAD s c a l e s were c o r r e l a t e d using the Spearman rho c o r r e l a t i o n procedure. FAD and OSIQ s c a l e scores were ranked to show o r d i n a l data and to i n v e s t i g a t e r e l a t i o n s h i p s among data. In the Spearman rho c o r r e l a t i o n procedure the i n t e n s i t y of r e l a t i o n s h i p s among data are i n d i c a t e d by c o e f f i c i e n t s from -1 to 1 which are expressed i n decimal form. For example, the s u b j e c t s ' mean OSIQ s c a l e score on Emotional Tone was p a i r e d with the f a m i l i e s ' mean FAD s c a l e score on Communication r e s u l t i n g i n a c o e f f i c i e n t of -.76. S t a t i s t i c a l t e s t s of r e l a t i o n s h i p may be n o t o r i o u s l y d i f f i c u l t t o i n t e r p r e t ( D i e r s , 1979). However, the s c o r i n g of the OSIQ and FAD somewhat eases 5 0 t h i s d i f f i c u l t y . Both data c o l l e c t i o n instruments are sc a l e d i n a p o s i t i v e d i r e c t i o n . "The higher the score the more of the v a r i a b l e there i s " ( D i e r s , 1979). Thus high scores on the OSIQ and FAD mean healthy development of a s e l f - c o n c e p t and f a m i l y f u n c t i o n i n g r e s p e c t i v e l y . Negative and p o s i t i v e c o r r e l a t i o n s r e s u l t i n g from the Spearman rho c o r r e l a t i o n procedure i n t h i s study can t h e r e f o r e be accepted at face value. I n t e r p r e t a t i o n of c o r r e l a t i o n s i n d i c a t e s more or l e s s r e l a t i o n s h i p between v a r i a b l e s but does not i n d i c a t e c a u s a l i t y . "Of the three c o n d i t i o n s necessary to make ca u s a l i n t e r p r e t a t i o n s (concomitant v a r i a t i o n , time order and random assignment) only concomitant v a r i a t i o n i s a u t o m a t i c a l l y part of a s s o c i a t i o n t e s t i n g s t u d i e s " ( D i e r s , 1979). Only the a s s o c i a t i o n between v a r i a b l e s i s determined i n s t u d i e s using r e l a t i o n s h i p - s e e k i n g methodologies. I n t e r p r e t a t i o n of the meaning of Spearman rho c o r r e l a t i o n c o e f f i c i e n t s a l s o depends on the confidence l e v e l s f o r the data c o l l e c t i o n instruments. Confidence l e v e l s tend to be higher when instruments have been used on l a r g e p o p u l a t i o n s , and when the sample s i z e of the p a r t i c u l a r study i s l a r g e (Anderson & Sc l o v e , 1978). The OSIQ has been used on over 15,000 s u b j e c t s and r e p o r t s confidence l e v e l s of £ <.05 f o r a l l of the OSIQ s c a l e s (Offer et a l . , 1981b, p. 159). 5 1 The FAD has not been t e s t e d on l a r g e p o p u l a t i o n s . However, the FAD has been shown t o s t a t i s t i c a l l y d i s c r i m i n a t e h e a l t h y from unhealthy f a m i l i e s (N=316) i n a study by E p s t e i n et a l . (1983, p. 178), and i n a study (N=98) by M i l l e r et a l . (1985, p. 353). U n f o r t u n a t e l y the FAD s t i l l has to be v a l i d a t e d with other r e p u t a b l e f a m i l y models and needs to be t e s t e d on l a r g e r p o p u l a t i o n s b e f o r e i t s r e s u l t s can be i n t e r p r e t e d as c o n f i d e n t l y as those of the OSIQ. However, Anderson and S c l o v e (1978, p. 598) and M i l l e r et a l . (1985) suggest t h a t c o r r e l a t i o n c o e f f i c i e n t s beyond .5 ( p o s i t i v e or n e g a t i v e ) f o r t e s t s t h a t measure s i m i l a r c o n s t r u c t s are e v i d e n c e of some r e l a t i o n s h i p between the v a r i a b l e s under study. M i l l e r et a l . (1985) used such a g u i d e l i n e when i n t e r p r e t i n g data from a study t h a t compared the FAD w i t h two other f a m i l y q u e s t i o n n a i r e s , the FUI and FACES 11 (p. 354). S i m i l a r c o n s t r u c t s measured by the FAD and OSIQ are psychopathology, problem s o l v i n g a b i l i t y , and f a m i l y r e l a t i o n s h i p s . T h e r e f o r e f o r the reasons d i s c u s s e d above, c o r r e l a t i o n c o e f f i c i e n t s g r e a t e r than [ .5] are c a u t i o u s l y c o n s i d e r e d i n t h i s s t udy. Summary The s e l e c t i o n of v o l u n t e e r s u b j e c t s and p r o t e c t i o n of t h e i r r i g h t s were d i s c u s s e d . The d e s c r i p t i v e c o r r e l a t i o n a l d e s i g n of t h i s m a i l - o u t study was d e s c r i b e d with emphasis on the data c o l l e c t i o n 5 2 i n s t r u m e n t s , the OSIQ and the FAD. Standard scores of the data c o l l e c t i o n instruments were d i s c u s s e d . The use of the Spearman rho c o r r e l a t i o n procedure on OSIQ and FAD s c a l e p a i r s was d e s c r i b e d with emphasis on i n t e r p r e t a t i o n of r e s u l t i n g c o r r e l a t i o n c o e f f i c i e n t s . 53 CHAPTER 4 R e s u l t s a n d D i s c u s s i o n O v e r v i e w The f o l l o w i n g c h a p t e r d e s c r i b e s t h i s s t u d y ' s s a m p l e o f 22 f a m i l i e s w i t h a n a d o l e s c e n t w i t h CF, a n d r e p o r t s r e s u l t s o f t h e OSIQ, FAD, a n d t h e i r Spearman r h o c o r r e l a t i o n c o e f f i c i e n t s . A d i s c u s s i o n o f t h e r e s u l t s c o n c l u d e s t h i s c h a p t e r . R e s u l t s D e s c r i p t i o n o f t h e S a m p l e The s i x t y p e r c e n t r e s p o n s e r a t e o f t h i s s t u d y e x c e e d e d t h e e x p e c t e d r a t e f o r m a i l - o u t s u r v e y s b y 10% ( P o l i t & H u n g l e r , 1 9 8 3 ) . Out o f a t o t a l s u i t a b l e p o p u l a t i o n o f 38 f a m i l i e s w i t h an a d o l e s c e n t w i t h CF, 22 r e s p o n d e d t o t h e s t u d y . F i f t e e n f e m a l e a n d s e v e n m a l e a d o l e s c e n t s r e s p o n d e d t o t h e OSIQ a n d FAD, and 34 o f t h e i r f a m i l y members r e t u r n e d t h e FAD. T w e n t y o f t h e s e w e r e m o t h e r s , s i x w e r e f a t h e r s a n d e i g h t w e r e m a l e o r f e m a l e s i b l i n g s . A l t h o u g h s m a l l , t h e s i z e o f t h e s a m p l e i n t h i s s t u d y f a v o r a b l y c o m p a r e d w i t h t h o s e o f o t h e r s t u d i e s on t h i s p o p u l a t i o n ( L a n d o n e t a l . , 1 9 8 0 ; S t e i n h a u s e n & S c h i n d l e r , 1 9 8 1 ) . U s u a l s a m p l e s i z e s f o r t h i s p o p u l a t i o n r a n g e f r o m 20 t o 38 s u b j e c t s . U n f o r t u n a t e l y , t h e s m a l l s i z e o f t h e s a m p l e i n t h i s s t u d y l i m i t s c o n f i d e n c e i n i n t e r p r e t a t i o n o f r e s u l t s . T h e s e m i d d l e - c l a s s s u b j e c t s w e r e f r o m i n t a c t , s e p a r a t e d , d i v o r c e d , a n d b l e n d e d f a m i l i e s o f 5 4 v a r i o u s r e l i g i o u s and e t h n i c backgrounds. S u b j e c t s were from urban, suburban, and r u r a l areas of B r i t i s h Columbia. The demographic data from t h i s sample were not u s e f u l i n s t a t i s t i c a l a n a l y s i s . However, these data were u s e f u l f o r d e s c r i b i n g the sample. Table 1 shows the f r e q u e n c i e s and percentages f o r responses to the q u e s t i o n s on the Demographic Data Sheet. The Demographic Data Sheets were completed by one parent i n each of the 22 f a m i l i e s with one e x c e p t i o n . An a d o l e s c e n t who was the s o l e respondent from her f a m i l y answered the q u e s t i o n s on one Demographic Data Sheet. Table 1 Frequencies and Percentages of Family Responses to the Demographic Data Sheet (N=22) Family Role of Respondents (N=56) Frequency % Female Adolescent with CF aged 13-15 years 7 12.5 Female Adolescent with CF aged 16-19 years 8 14.3 Male Adolescent with CF aged 13-15 years 3 5.4 Male Adolescent with CF aged 16-19 years 4 7.1 Mother 20 35.7 Father 6 10.7 Female s ib l ing 3 5.4 Male s ib l ing 5 8.9 56 100 Religion of the family (N =22) Roman Catholic 7 32 Protestant 8 36 Other (unspecified) 2 9 None 5 23 22 100 Marital status of parents from 22 families Married 15 68 Remarried 1 4 Single 0 0 Separated 3 14 Divorced 3 14 22 100 table cont mues Table 1 Frequencies and Percentages of Family Responses to the Demographic Data Sheet (N=22) 5 6 Family Role Frequency Ethnic origin of families Western European 6 27 Eastern European 1 4.5 N. American 12 55 Inuit 1 4.5 Other (unspecified) 2 9 22 100 White Asian Inuit Racial origin of families 20 1 1 91 4.5 4.5 22 100 Range of income of families Less than $10,000 1 5 $20/000 - $40,000 17 77 Greater than $40,000 4 18 22 100 When d a t a w e r e i n t e r p r e t e d i t was i m p o r t a n t t o remember t h e l i m i t a t i o n s o f t h i s s m a l l s e l f - a p p o i n t e d s a m p l e a n d t h e l i m i t e d c o n f i d e n c e i n s t a n d a r d FAD s c o r e s . The 22 a d o l e s c e n t s w i t h CF and t h e i r 34 f a m i l y members who r e s p o n d e d t o t h i s s t u d y w e re n o t r e p r e s e n t a t i v e o f t h e o v e r a l l p o p u l a t i o n o f a d o l e s c e n t s w i t h CF and t h e i r f a m i l i e s . P e r h a p s o n l y a d o l e s c e n t s w i t h w e l l d e v e l o p e d s e l f - c o n c e p t s a n d / o r f a m i l y members f r o m n o r m a l f u n c t i o n i n g f a m i l i e s w e r e a b l e t o f u l f i l l t h e r e q u i r e m e n t s o f t h i s s t u d y . The l i m i t e d c o n f i d e n c e i n s t a n d a r d i z e d FAD s c o r e s was e x p l a i n e d e a r l i e r i n t h i s c h a p t e r . The O f f e r S e l f - i m a g e Q u e s t i o n n a i r e S u b j e c t s ' OSIQ mean s c a l e s c o r e s w e r e a b o v e t h e s t a n d a r d mean o f 50 on a l l s c a l e s e x c e p t f o r t h e Body a n d S e l f - i m a g e S c a l e . H o w e v e r , t h i s s c a l e s c o r e o f 49.37 was n o t l o w e n o u g h t o be c o n s i d e r e d u n h e a l t h y . The s t a n d a r d i z e d OSIQ r e s u l t s f o r a l l s c a l e s w e r e s l i g h t l y n e g a t i v e l y s k e w e d e x c e p t f o r S u p e r i o r A d j u s t m e n t , w h i c h was more s y m m e t r i c a l l y d i s t r i b u t e d . I n a d d i t i o n , g r a p h i c p l o t s o f t h e s u b j e c t s ' mean s c a l e s c o r e s w e r e s i m i l a r t o g r a p h s o f t h e s c o r e s o f n o r m a l a d o l e s c e n t s a s d e s c r i b e d f r o m c o m p i l e d OSIQ d a t a ( O f f e r e t a l . , 1 9 8 2 ) . The mean s c o r e s o f a d o l e s c e n t s u b j e c t s on t h e OSIQ a p p e a r i n T a b l e 2. The s c a l e s c o r e s f o r f o u r s u b j e c t s w e r e a l l a b o v e t h e s t a n d a r d mean o f 5 0 . N i n e t e e n o f t h e s u b j e c t s h a d 58 nine of t h e i r s c a l e scores above the s tandard mean. Th i s sample o f ado le scen t s w i t h CF had h igher scores than the s tandard normat ive va lues fo r the OSIQ. For a l l 22 s u b j e c t s , the mean M o r a l and Psychopathology Sca l e scores were beyond the f i r s t s tandard d e v i a t i o n (50+15) above the mean s tandard s c o r e . Mean s c a l e scores fo r the sub jec t s were g rea te r than .66 s tandard d e v i a t i o n s above the s tandard mean on the Impulse C o n t r o l , Emot iona l Tone, V o c a t i o n a l and E d u c a t i o n a l G o a l s , and Supe r io r Adjustment S c a l e s . The remain ing mean s c a l e scores were above 50 w i t h one e x c e p t i o n . The s u b j e c t s ' score was 49.37 on the Body and Se l f - image S c a l e . However, the fo rego ing score was .04 o f a s tandard d e v i a t i o n below the s tandard mean and i t should not be cons ide red to f a l l w i t h i n the unheal thy range o f OSIQ scores (Offer et a l . , 1981b). Table 2 OSIQ Scores* f o r Adolescents With CF (N=22) S c a l e Mean Score sd Range P s y c h o l o g i c a l S e l f Impulse C o n t r o l 64.00 10.58 43.09 - 83. ,63 Emotional Tone 60.90 15.89 28.84 - 82. .79 Body and Self-Image 49.37 18.14 13.77 - 88. 03 S o c i a l S e l f S o c i a l R e l a t i o n s h i p s 58.24 16.13 26.39 - 80. 42 Morals 68.38 20.34 24.44 - 92. 41 Sexual S e l f Sexual A t t i t u d e s 56.76 12.16 29.50 - 74. ,50 F a m i l i a l S e l f Family A t t i t u d e s 50.91 21.36 10.23 - 86. 00 Coping S e l f Mastery o f the E x t e r n a l World 58.79 13.81 21.37 - 76. 54 V o c a t i o n a l and E d u c a t i o n a l Goals 63.80 11.57 39.67 - 82. 11 Psyche-pathology 67.65 14.82 42.22 - 85. 43 Superi o r Adjustment 60.12 12.38 39.44 - 88. 31 T o t a l O v e r a l l Average 59.90 11.16 37.49 - 75. 97 * Scores >50 i n d i c a t e a more p o s i t i v e s e l f - c o n c e p t w h i l e s c o r e s <50 i n d i c a t e a more n e g a t i v e s e l f - c o n c e p t . 6o When scores are fu r t he r examined acco rd ing to age and s e x - a p p r o p r i a t e re fe rence groups , i t i s apparent tha t younger male and female ado lescen t s (aged 13-15 yea r s ) r epor ted more d i f f i c u l t i e s w i t h the development o f s e l f - c o n c e p t . These younger ado lescen t s had low scores on the Body and Se l f - image S c a l e s . The mean scores for age and s e x - a p p r o p r i a t e re fe rence groups are shown i n Table 3. Male ado lescen t s i n the younger age group were .34 of a s tandard d e v i a t i o n below the s tandard mean on the Body and s e l f - i m a g e Sca le and female ado lescen t s of co r respond ing age were .48 of a s tandard d e v i a t i o n below the mean. Male ado lescen t s between 15-19 years had a low score on t h i s s c a l e ( 4 6 . 2 6 ) . However, the 15-19 year o l d m a l e s ' score was on ly .25 of a s tandard d e v i a t i o n below the s tandard mean score cons ide red to be i n d i c a t i v e o f normalcy . Female ado le scen t s aged 15-19 years had a h igh score on the s c a l e which was .56 o f a s tandard d e v i a t i o n above the s tandard mean. Table 3 Mean OSIQ Scores* f o r Adolescents w i t h CF C l a s s i f i e d by Age and Sex (N=22) Females . Females Males Males S c a l e (13-15) (16-19) (13-15) (16-19) (n=7) (n=8) (n=3) (n=4) P s y c h o l o g i c a l S e l f Impulse c o n t r o l 62.27 62.23 69.99 66.11 Emotional Tone 56.78 57.60 68.68 68.86 Body and Self-Image 42.76 58.39 44.89 46.25 S o c i a l S e l f S o c i a l R e l a t i o n s h i p s 61.17 47.54 64.26 70.00 Morals 68.37 61.75 83.79 70.12 F a m i l i a l S e l f Family A t t i t u d e s 58.17 55.75 52.83 59.2 Sexual S e l f Sexual A t t i t u d e s 40.77 58.60 41.88 60.08 Coping S e l f Mastery o f the E x t e r n a l World 61.85 58.52 50.36 60.33 V o c a t i o n a l and E d u c a t i o n a l Goals 62.45 62.16 60.98 71.56 Psychopathology 69.13 65.76 65.85 70.25 Su p e r i o r Adjustment 62.36 55.03 59.70 66.69 T o t a l Score 58.61 58.38 60.08 62.75 * Scores >50 i n d i c a t e a more p o s i t i v e s e l f - c o n c e p t w h i l e s c o r e s <50 i n d i c a t e a more negative- s e l f - c o n c e p t . 6 2 M a l e a nd f e m a l e a d o l e s c e n t s a g e d 13-15 y e a r s a l s o h a d l o w mean s c o r e s on t h e S e x u a l A t t i t u d e s S c a l e . The mean s c o r e o f t h e m a l e a d o l e s c e n t s was .54 o f a s t a n d a r d d e v i a t i o n b e l o w t h e s t a n d a r d mean; t h e s c o r e o f t h e f e m a l e a d o l e s c e n t s i n t h e same age g r o u p was .62 o f a s t a n d a r d d e v i a t i o n b e l o w t h e mean. M a l e a nd f e m a l e a d o l e s c e n t s a g e d 15-19 y e a r s h a d h i g h e r s c o r e s on t h e S e x u a l A t t i t u d e s S c a l e w i t h mean s c a l e s c o r e s .67 a n d .57 r e s p e c t i v e l y o f a s t a n d a r d d e v i a t i o n a b o v e t h e s t a n d a r d mean. Ev e n when t h e l o w mean s c a l e s c o r e s w e r e c o n s i d e r e d a l l age and s e x - a p p r o p r i a t e r e f e r e n c e g r o u p s o f s u b j e c t s h a d t o t a l OSIQ s c o r e s w e l l a b o v e t h e s t a n d a r d mean o f 5 0 . S t a n d a r d d e v i a t i o n s f o r t h e r e f e r e n c e g r o u p s r a n g e d f r o m .56 t o .85 o f a s t a n d a r d d e v i a t i o n a b o v e t h e s t a n d a r d mean OSIQ t o t a l s c o r e . As i n d i c a t e d , t h e e l e v e n OSIQ s c a l e s a r e c o l l a p s e d i n t o f i v e S e l f S y s t e m s . The mean s c o r e s f o r t h e f i v e S e l v e s a r e t a b u l a t e d i n T a b l e 4. Mean S e l f s c o r e s o f t h e s u b j e c t s w e r e a b o v e t h e s t a n d a r d mean o f 50 w i t h two e x c e p t i o n s . F e m a l e a n d m a l e a d o l e s c e n t s a g e d 13-15 y e a r s h a d S e x u a l s e l f s c o r e s b e l o w t h e s t a n d a r d mean. The l o w s c o r e s o f s u b j e c t s ( e x c e p t f e m a l e s a g e d 16-19 y e a r s ) on t h e Body a nd S e l f - i m a g e S c a l e , a component o f t h e P s y c h o l o g i c a l S e l f , d i d n o t c a u s e t h e s u b j e c t s ' mean s c o r e on t h e P s y c h o l o g i c a l S e l f t o d r o p b e l o w t h e s t a n d a r d mean. 63 Table 4 Mean Scores* f o r the F i v e OSIQ Selves C l a s s i f i e d by Age and Sex (N=22) Females Females Males Males S e l f (13-15) (16-19) (13-15) (16-19) (n=7) (n=8) (n=3) (n=4) P s y c h o l o g i c a l 53. .93 59. .41 61. .18 60. .40 S o c i a l 62. .57 55. .01 66. .96 66, .45 Sexual 40. .75 58. .60 41. .88 60. .08 F a m i l i a l 61. .85 58. .52 50. .36 60. ,33 Coping 64, .65 60. .97 62. .18 69. . 50 * Scores >50 i n d i c a t e a more p o s i t i v e s e l f - c o n c e p t while scores <50 i n d i c a t e a more negative s e l f - c o n c e p t . The Family Assessment Device The FAD scores of the f a m i l i e s of t h i s study were p o s i t i v e l y skewed (long t a i l to the r i g h t ) with one e x c e p t i o n . The A f f e c t i v e Involvement Scale scores were symmetrically d i s t r i b u t e d . Mean scores of the f a m i l i e s i n t h i s study were s i m i l a r to those of the random sample (N=45) i n v e s t i g a t e d by M i l l e r et a l . (1985) as d e s c r i b e d i n Chapter 3. M i l l e r et a l . suggest that r e s e a r c h e r s should use the scores f o r t h e i r s t u d i e s " for s p e c i a l i z e d usages such as a s c r e e n i n g d e v i c e or f o r the i d e n t i f i c a t i o n of normal f a m i l i e s " ( M i l l e r et a l . , 1985, p. 384). M i l l e r et a l . (1985) emphasize that the general p o p u l a t i o n of f a m i l i e s c o n t a i n s some f a m i l i e s with d i f f i c u l t i e s i n f a m i l y f u n c t i o n i n g . According to 64 M i l l e r et a l . ( 1 9 8 5 ) , r e s e a r c h e r s should compare t h e i r s u b j e c t s ' FAD mean s c o r e s t o the scores of the M i l l e r ( 1 9 8 5 ) sample and suggested h e a l t h y c u t o f f s c o r e s f o r the FAD ( E p s t e i n et a l . , 1 9 8 3 ) . T h e r e f o r e , the mean FAD s c a l e s c o r e s of s u b j e c t s , the s c o r e s of M i l l e r et a l . ' s ( 1 9 8 5 ) random sample, and suggested h e a l t h y c u t - o f f s c o r e s f o r the FAD are t a b u l a t e d i n Table 5 . 65 Table 5 O v e r a l l Mean FAD S c a l e Scores, Scores o f a Random Sample*, and Suggested H e a l t h y c u t o f f Scores** f o r t h e FAD (N=22) Subjects (N=22) Scores o f M i l l e r ' s Random Sample * (N=45) Suggested Healthy c u t o f f Scores ** (N=803) Fad s c a l e X sd X s d X Problem S o l v i n g 1.79 .41 1.87 .38 2.10 Communication 1.90 .51 2.02 .46 2.10 R o l e s 2.21 .35 2.05 .31 2.10 A f f e c t i v e Responsiveness 1.82 .52 1.89 .56 2.00 A f f e c t i v e Involvement 1.85 .49 1:78 .40 2.00 Behavior C o n t r o l 1.72 .25 1.75 .35 1.80 General F u n c t i o n i n g 1.75 .54 1.71 .45 1.80 M i l l e r e t a l . (1985) - The authors suggest these scores as an a l t e r n a t i v e t o t h e H e a l t h y C u t o f f Scores. The authors assume t h a t t h e g e n e r a l p o p u l a t i o n as represented by t h e i r random sample would c o n t a i n some f a m i l i e s w i t h some d i f f i c u l t i e s i n f a m i l y f u n c t i o n i n g . E p s t e i n et a l . (1983) - The authors compiled suggested Healthy c u t o f f Scores as a r e s u l t o f s e v e r a l s t u d i e s (N=803). 66 Many of the FAD s c a l e s c o r e s of t h i s study and those of the random sample were below the s c o r e s c o n s i d e r e d i n d i c a t i v e o f h e a l t h y f a m i l y f u n c t i o n i n g (suggested h e a l t h y c u t o f f s c o r e s ) ( E p s t e i n et a l . , 1983). T h i s means t h a t the mean FAD s c a l e s c o r e s o f s u b j e c t s were lower than s c o r e s i n d i c a t i v e of h e a l t h y f a m i l y f u n c t i o n i n g . However, s u b j e c t s ' s c o r e s were s i m i l a r t o the s c o r e s of the g e n e r a l p o p u l a t i o n as d e s c r i b e d by M i l l e r et a l . (1985) with t h r e e e x c e p t i o n s . The s u b j e c t s ' mean s c o r e s on the Problem s o l v i n g and Communication S c a l e s were lower; the s u b j e c t s ' mean ! score on the Roles S c a l e was h i g h e r . When compared t o suggested h e a l t h y s c o r e s the mean scor e s o f subjects, were lower except on the Roles S c a l e . The Behavior C o n t r o l and Gener a l F u n c t i o n i n g S c a l e s c o r e s were near the suggested h e a l t h y c u t o f f s c o r e s . However, the remaining f o u r s c a l e mean scores o f the s u b j e c t s (Problem S o l v i n g , Communication, A f f e c t i v e Responsiveness, and A f f e c t i v e Involvement) were f a r below the h e a l t h y c u t o f f s c o r e s . T h i s means the s u b j e c t s r e p o r t e d l e s s than h e a l t h y f a m i l y f u n c t i o n i n g . The R e l a t i o n s h i p of S e l f - C o n c e p t and Family F u n c t i o n i n g The s u b j e c t s ' o v e r a l l mean OSIQ and FAD s c a l e s c o r e s had Spearman rho c o e f f i c i e n t s ranging from .34 t o -.76. The s t r o n g e s t n e g a t i v e l y and p o s i t i v e l y c o r r e l a t e d OSIQ and FAD mean s c a l e s are p r o v i d e d i n T a b l e 6. 67 Table 6 Spearman rho C o r r e l a t i o n C o e f f i c i e n t s of S e l e c t e d FAD and OSIQ Scores (N=22) OSIQ S c a l e FAD S c a l e C o e f f i c i e n t r Emotional Tone Communication -.76 Emotional Tone A f f e c t i v e Involvement -.70 Psychopathology A f f e c t i v e Involvement -.72 Impulse C o n t r o l A f f e c t i v e Involvement -.70 Mastery of the E x t e r n a l World Problem S o l v i n g -.74 Family A t t i t u d e s Behavior C o n t r o l .34 Negative c o r r e l a t i o n s appeared with many of the FAD - OSIQ s c a l e p a i r s . The s t r o n g e s t n e g a t i v e l y c o r r e l a t e d p a i r s were: Emotional Tone and Communication; Mastery of the E x t e r n a l World and Problem S o l v i n g ; Psychopathology and A f f e c t i v e Involvement; Emotional T?one and A f f e c t i v e Involvement; and Impulse C o n t r o l and A f f e c t i v e Involvement. The h i g h e s t p o s i t i v e c o r r e l a t i o n c o e f f i c i e n t was .34 f o r the s c a l e p a i r of Family A t t i t u d e s and Behavior C o n t r o l . However, the f o r e g o i n g p o s i t i v e c o r r e l a t i o n c o e f f i c i e n t was too low to be s t a t i s t i c a l l y s i g n i f i c a n t . 66 The above n e g a t i v e c o r r e l a t i o n c o e f f i c i e n t s r e s u l t e d when the a d o l e s c e n t s ' r e s p e c t i v e h i g h e r mean OSIQ s c a l e s c o r e s were p a i r e d with t h e i r f a m i l i e s ' low mean FAD S c a l e s c o r e s . For example, the mean s c o r e on Emotional Tone (60.90) (10.9 above the standar d mean) was p a i r e d with low mean s c o r e s on two FAD S c a l e s . These were Communication (1.90) and A f f e c t i v e Involvement (1.85) which were r e s p e c t i v e l y .2 and .15 below suggested h e a l t h y c u t o f f s c o r e s as suggested by E p s t e i n et a l . (1983). The a d o l e s c e n t s ' h i g h e r OSIQ Psychopathology and Impulse c o n t r o l S c a l e s ( r e s p e c t i v e l y 17.65 and 14.0 above the standar d mean) were a l s o p a i r e d with the f a m i l i e s ' lower mean score on the A f f e c t i v e Involvement S c a l e of the FAD. A l s o , the a d o l e s c e n t s ' mean s c o r e on the Mastery of the E x t e r n a l World S c a l e of the OSIQ (8.79 above the standar d mean) when p a i r e d with the f a m i l i e s ' mean score on the Problem S o l v i n g S c a l e of the FAD (.21 below the suggested h e a l t h y c u t o f f s c o r e s ( E p s t e i n et a l . , 1983), r e s u l t e d i n a n e g a t i v e c o r r e l a t i o n c o e f f i c i e n t . In c o n t r a s t , the h i g h e s t p o s i t i v e c o r r e l a t i o n c o e f f i c i e n t r e s u l t e d from the p a i r i n g of the a d o l e s c e n t s ' mean s c o r e on the Family A t t i t u d e s S c a l e of the OSIQ and the Behavior c o n t r o l S c a l e of the FAD. The f o r e g o i n g mean s c o r e s o f s u b j e c t s r e s p e c t i v e l y were 0.91 a n d 0.08 a b o v e t h e s c o r e s s u g g e s t e d f o r h e a l t h y f u n c t i o n i n g by t h e a u t h o r s o f t h e d a t a c o l l e c t i o n i n s t r u m e n t s ( E p s t e i n e t a l . , 1 9 8 3 ; O f f e r e t a l . , 1 9 8 2 ) . A l s o , t h e c o r r e l a t i o n c o e f f i c i e n t was .34, w h i c h i s n o t s t r o n g s t a t i s t i c a l e v i d e n c e f o r a r e l a t i o n s h i p . The b i a s i n g e f f e c t o f a d o l e s c e n t s u b j e c t s r e s p o n d i n g t o b o t h d a t a c o l l e c t i o n i n s t r u m e n t s was c o n s i d e r e d . T h e r e f o r e , t h e Spearman r h o c o r r e l a t i o n p r o c e d u r e was c a r r i e d o u t w i t h a n d w i t h o u t t h e a d o l e s c e n t s ' FAD d a t a . R e s u l t s i n d i c a t e d t h a t t h i s f a c t o r d i d n o t i n f l u e n c e f i n d i n g s . T h e r e f o r e , t h e i n i t i a l S p earman c o e f f i c i e n t s a s d e s c r i b e d i n T a b l e 6 were a c c e p t e d . D i s c u s s i o n The O f f e r S e l f - i m a g e Q u e s t i o n n a i r e The s e l f - c o n c e p t s c o r e s o f t h e s u b j e c t s w e r e g e n e r a l l y h i g h . M o s t mean OSIQ s c a l e s c o r e s w e r e h i g h e r t h a n s c o r e s s u g g e s t e d f o r a d o l e s c e n t s w i t h w e l l d e v e l o p e d s e l f - c o n c e p t s . H o w e v e r , s u b j e c t s i n d i c a t e d t h a t t h e i r s e l f - c o n c e p t s w e r e l e s s w e l l d e v e l o p e d i n two a r e a s . The a d o l e s c e n t s , e x c e p t f o r t h e f e m a l e s a g e d 16-19 y e a r s , r e p o r t e d c o n c e r n s a b o u t Body and S e l f - i m a g e ; a d o l e s c e n t s a g e d 13-15 y e a r s h a d c o n c e r n s a b o u t S e x u a l A t t i t u d e s . T h e s e t w o a r e a s o f c o n c e r n do n o t mean t h a t s u b j e c t s h a d p o o r l y d e v e l o p e d s e l f - c o n c e p t s . The OSIQ a s s u m e s n o r m a l a d o l e s c e n t s d i s p l a y s i m i l a r v a r i a t i o n s i n 70 OSIQ s c o r e s ( O f f e r e t a l . , 1 9 8 1 b ) . T h e r e f o r e , t h o u g h some s u b j e c t s h a d c o n c e r n s i n two a r e a s o f t h e s e l f -c o n c e p t , s u b j e c t s on t h e w h o l e r e p o r t e d a b o v e a v e r a g e s e l f - c o n c e p t d e v e l o p m e n t . The c h a r a c t e r i s t i c s a s s o c i a t e d w i t h a w e l l d e v e l o p e d s e l f - c o n c e p t w e r e d i s c u s s e d i n t h e d e s c r i p t i o n o f t h e OSIQ i n C h a p t e r 3. A c c o r d i n g t o a n a l y s i s o f s u b j e c t s ' OSIQ i t e m r e s p o n s e s w h i c h r a n g e f r o m " D e s c r i b e s me v e r y w e l l " t o "Does n o t d e s c r i b e me a t a l l " , s u b j e c t s r e p o r t e d t h a t t h e s e c h a r a c t e r i s t i c s d e s c r i b e d t h e m w e l l . The s u b j e c t s ' c o n c e r n s a b o u t Body and S e l f - i m a g e w e r e n o t e x t r e m e . As i n d i c a t e d , t h e f e m a l e s a g e d 16-19 y e a r s d i d n o t r e p o r t c o n c e r n s on t h i s s c a l e . The s u b j e c t s ' o v e r a l l s c o r e on t h e s c a l e was o n l y .63 b e l o w t h e s t a n d a r d mean o f 50. F u r t h e r m o r e , a t r e n d t o w a r d b e t t e r Body a n d S e l f - i m a g e s c o r e s was n o t e d f o r t h e o l d e r a d o l e s c e n t s . The 16-19 y e a r o l d f e m a l e s s c o r e was a b o v e 50 and t h e 16-19 y e a r o l d m a l e s were o n l y 3.75 b e l o w t h e s t a n d a r d mean. T h i s may i n d i c a t e t h a t a d o l e s c e n t s a d a p t t o t h e i r p h y s i c a l d i f f i c u l t i e s a s t h e y g e t o l d e r . L a n d o n e t a l . ( 1 9 8 0 ) a nd L e w i s t o n ( 1 9 8 0 ) r e p o r t t h a t a d o l e s c e n t s w i t h CF h a d d i f f i c u l t i e s w i t h d e v e l o p m e n t o f t h e b o d y a n d s e l f - i m a g e a r e a o f t h e s e l f -c o n c e p t a s m e a s u r e d w i t h t h e OSIQ. They a t t r i b u t e t h i s t o t h e u n u s u a l p h y s i c a l c h a l l e n g e s t h e a d o l e s c e n t s f a c e , n a m e l y g r o w t h d e l a y s , d i f f i c u l t i e s w i t h s e x u a l maturation, low weight, r e s p i r a t o r y and g a s t r o i n t e s t i n a l d i f f i c u l t i e s , and l i f e p r o l o n g i n g treatments. Landon et a l . (1980) and Lewiston (1980) say that the body and self-image concerns of the adolescents are a s i g n of r e a l i s t i c concern about poor h e a l t h . They recommend that h e a l t h care p r o f e s s i o n a l s should support the development of a s e l f - c o n c e p t i n t h i s p o p u l a t i o n by g i v i n g them p r a c t i c a l advice on how to cope with p h y s i c a l d i f f i c u l t i e s , and by p r o v i d i n g education about adolescent growth and development, n u t r i t i o n , and s e x u a l i t y . Smith et a l . (1983) a l s o remark on the p h y s i c a l d i f f i c u l t i e s that a d o l e s c e n t s with CF face i n development of a s e l f - c o n c e p t . Smith et a l . r e p o r t that s u b j e c t s ' h ealthy s e l f - c o n c e p t scores as measured with the TSC were r e l a t e d to p e r c e p t i o n s of p o s i t i v e s o c i a l support i n c l u d i n g t h at from h e a l t h care p r o f e s s i o n a l s . Subjects from the Smith sample rep o r t e d that the s e r v i c e s of the adolescent c l i n i c helped them. S e r v i c e s i n c l u d e d p r a c t i c a l a d v i c e about coping with p h y s i c a l d i f f i c u l t i e s , education about growth and development, p r o v i s i o n of r e g u l a r medical appointments, and r e l a x a t i o n techniques such as biofeedback, which helped the adolescents to cope with the d i f f i c u l t i e s of CF. Subjects of t h i s study r e c e i v e d advice about coping with p h y s i c a l d i f f i c u l t i e s and r e g u l a r medical appointments and advice from a c l i n i c a l nurse s p e c i a l i s t from the 72 BCCH CF C l i n i c . P h y s i c a l d i f f i c u l t i e s w e r e c i t e d b y B o y l e e t a l . (1976)/ D a n i e l ( 1 9 7 7 ) , O f f e r e t a l . (1981b), and T r a v i s (1976) a s a m a j o r r e a s o n f o r d i f f i c u l t i e s e n c o u n t e r e d by t h i s p o p u l a t i o n i n t h e d e v e l o p m e n t o f a s e l f - c o n c e p t . The f o r e g o i n g a u t h o r s c l a i m t h a t a d o l e s c e n t s c a n n o t c o p e w i t h t h e p h y s i c a l d i f f i c u l t i e s o f CF. H o w e v e r , a c c o r d i n g t o L e w i s t o n (1980), t h e a u t h o r s f o c u s t o o much on t h e p r o b l e m s o f t h e a d o l e s c e n t s w i t h o u t a c c o u n t i n g f o r t h e i r a d a p t i v e c a p a c i t i e s . The p h y s i c a l c o n c e r n s o f t h e s u b j e c t s o f t h i s s t u d y a p p e a r t o a f f e c t t h e i r S e x u a l A t t i t u d e s a s e v a l u a t e d by t h e OSIQ. A c c o r d i n g t o O f f e r e t a l . ( 1 9 8 1 b ) , whose s u b j e c t s a l s o h a d c o n c e r n s a b o u t s e x u a l i t y , t h e s e f i n d i n g s a p p e a r r e a s o n a b l e when t h e s e x u a l m a t u r a t i o n d i f f i c u l t i e s o f t h i s p o p u l a t i o n a r e c o n s i d e r e d . A d o l e s c e n t s w i t h CF a r e o f t e n t h i n , p a l e , may h a v e o b v i o u s b r e a t h i n g p r o b l e m s , and may e v e n be s t e r i l e . They may n o t l o o k l i k e h e a l t h y a d o l e s c e n t s . T h i s may p r e v e n t t h e m f r o m f i t t i n g i n e a s i l y w i t h t h e i r p e e r s who p l a c e a p r i o r i t y on e m e r g i n g s e x u a l a t t r a c t i v e n e s s ( T o n k i n , 1 9 8 2 ) . T h e r e f o r e , L e w i s t o n ( 1 9 8 0 ) e m p h a s i z e s t h e i m p o r t a n c e o f v i g o r o u s m e d i c a l t r e a t m e n t o f l o w w e i g h t f o r t h i s p o p u l a t i o n ( i n c l u d i n g t h e u s e o f t o t a l p a r e n t e r a l n u t r i t i o n ) . T o t a l p a r e n t e r a l n u t r i t i o n h e l p s i n a b s o r p t i o n o f c a l o r i c i n t a k e away f r o m t h e a d o l e s c e n t ' s v u l n e r a b l e g a s t r o i n t e s t i n a l system. Ado l e s c e n t s can then g a i n weight i n c l u d i n g body f a t which s t i m u l a t e s sexual maturation, e s p e c i a l l y i n females. Thus, the adolescents can look more normal and a c q u i r e secondary sex c h a r a c t e r i s t i c s . Another b e n e f i t may be that the adolescents w i l l look more l i k e t h e i r peers. Lewiston (1980) and O f f e r et a l . (1981b) recommend that o p p o r t u n i t i e s f o r e d u c a t i o n and c o u n s e l l i n g regarding s e x u a l i t y should be made a v a i l a b l e to t h i s p o p u l a t i o n . According to O f f e r et a l . (1981b), s u p p o r t i v e i n t e r v e n t i o n s by h e a l t h care p r o f e s s i o n a l s can promote the development of the Sexual S e l f i n adolescents with CF. Smith et a l . (1983) a l s o found that s u b j e c t s ' s e l f - c o n c e p t scores were r e l a t e d to s o c i a l support such as that from h e a l t h care p r o f e s s i o n a l s . Health care s e r v i c e s for the Smith sample i n c l u d e d an adolescent c l i n i c , r e g u l a r medical appointments, i n p a t i e n t and o u t p a t i e n t education and c o u n s e l l i n g by a c l i n i c a l nurse s p e c i a l i s t , and contact w i t h an adolescent support group i f d e s i r e d . The a d o l e s c e n t s of t h e Smith et a l . sample had a m u l t i d i s c i p l i n a r y team of h e a l t h care p r o f e s s i o n a l s t r y i n g t o help the adolescents with many aspects of t h e i r l i v e s . Such s e r v i c e s and more were provided to the s u b j e c t s of t h i s study by the s t a f f of the BCCH CF C l i n i c . A d d i t i o n a l s e r v i c e s i n c l u d e d : f i n a n c i a l a s s i s t a n c e f o r m e d i c a t i o n s , t r e a t m e n t a i d s , a n d t r i p s t o c l i n i c ; an i n p a t i e n t a n d o u t p a t i e n t l i a i s o n w i t h t h e CF C l i n i c s t a f f ; g e n e t i c , n u t r i t i o n a l , a n d p h y s i o t h e r a p y c o u n s e l l i n g ; a CF n e w s l e t t e r , a n d e a s y a c c e s s t o e x p e r t c o n s u l t a n t s f r o m many f i e l d s t h r o u g h t h e t e r t i a r y c a r e f a c i l i t i e s o f BCCH. T h e s e s e r v i c e s h e l p t h e a d o l e s c e n t s w i t h p r a c t i c a l c o n c e r n s a n d p r o m o t i o n o f many a s p e c t s o f t h e i r h e a l t h . The h e a l t h y s e l f - c o n c e p t s c o r e s o f t h e a d o l e s c e n t s o f t h i s s t u d y may h a v e b e e n i n f l u e n c e d by t h e s o c i a l s u p p o r t t h e y r e c e i v e d f r o m t h e CF C l i n i c a n d BCCH. The F a m i l y A s s e s s m e n t D e v i c e The mean FAD s c o r e s o f t h e f a m i l i e s o f t h i s s t u d y were l e s s t h a n s c o r e s s u g g e s t e d f o r h e a l t h y f u n c t i o n i n g f a m i l i e s ( S u g g e s t e d H e a l t h y C u t o f f S c o r e s ) a s recommended b y E p s t e i n e t a l . ( 1 9 8 3 ) , w i t h one e x c e p t i o n . The p a r t i c i p a t i n g f a m i l i e s r e p o r t e d h i g h s c o r e s on t h e R o l e s S c a l e . T h r e e o f t h e f a m i l i e s ' mean FAD s c a l e s c o r e s w e r e s i m i l a r t o t h o s e e x p e c t e d o f t h e g e n e r a l p o p u l a t i o n a c c o r d i n g t o M i l l e r e t a l . ' s ( 1 9 8 5 ) a n a l y s i s o f s c o r e s f r o m a random s a m p l e o f r e p o r t e d l y h e a l t h y f a m i l i e s . N i n e t e e n f a m i l i e s h a d l o w e r s c o r e s t h a n t h e M i l l e r s a m p l e . A s c o r e a b o v e t h e h e a l t h y s c o r e on t h e R o l e s S c a l e s u g g e s t s t h a t t h e f a m i l i e s ' p a t t e r n s o f b e h a v i o r a r e w e l l o r g a n i z e d s o t h a t f a m i l y members f u l f i l l t h e i r f u n c t i o n s . A s d e s c r i b e d b y D a n i e l (1977); R o s e & Thomas ( 1 9 8 7 ) ; and Turk ( 1 9 6 4 ) , f a m i l i e s with a c h i l d with CF o f t e n expend so much energy on the n e c e s s i t i e s of l i f e t h a t other areas of f a m i l y f u n c t i o n i n g such as communication and f e e l i n g s of attachment t o each other are n e g a t i v e l y a f f e c t e d . T h e r e f o r e , a f a m i l y which appears w e l l o r g a n i z e d and competent may not n e c e s s a r i l y have h e a l t h y f a m i l y f u n c t i o n i n g . T h i s may be an important p o i n t t o remember i n assessment of the f a m i l y f u n c t i o n i n g o f t h i s p o p u l a t i o n . The G e n e r a l F u n c t i o n i n g and Behavior C o n t r o l S c a l e s c o r e s of the s u b j e c t s were near the suggested h e a l t h y c u t o f f s c o r e s recommended f o r h e a l t h y f a m i l y f u n c t i o n i n g by E p s t e i n et a l . ( 1 9 8 3 ) . R e s p e c t i v e l y , these f i n d i n g s i n d i c a t e t h a t the f a m i l i e s were c o h e s i v e and were f l e x i b l e i n the c o n t r o l of behavior (e.g., d i s c i p l i n e ) . T h i s f i n d i n g o f f a m i l y f l e x i b i l i t y was encouraging. A c c o r d i n g t o the r e p o r t of Docter ( 1 9 7 3 ) , r i g i d f a m i l i e s may adhere so s t r i c t l y t o the c o n t r o l o f the d i s e a s e t h a t the p e r s o n a l i t y of the a d o l e s c e n t may be damaged. Since the f a m i l i e s o f t h i s study r e p o r t e d s c o r e s i n d i c a t i v e of f l e x i b l e Behavior C o n t r o l and c o h e s i v e G e n e r a l F u n c t i o n i n g they were u n l i k e l y t o be so s t r i c t with treatment t h a t the a d o l e s c e n t s ' other needs would be n e g l e c t e d . The f a m i l i e s ' low mean s c o r e s on four s c a l e s of the FAD are a conc e r n . F a m i l i e s ' s c o r e s on the S c a l e s o f Problem S o l v i n g , Communication, A f f e c t i v e Responsiveness and A f f e c t i v e Involvement were below the suggested h e a l t h y c u t o f f s c o r e s ( E p s t e i n et a l . 1983) and s c o r e s thought t o be r e p r e s e n t a t i v e of the g e n e r a l p o p u l a t i o n of f a m i l i e s ( M i l l e r et a l . , 1985) . Problem S o l v i n g r e f e r s t o the f a m i l i e s ' a b i l i t y t o r e s o l v e i n s t r u m e n t a l and a f f e c t i v e problems. As i n d i c a t e d i n the d e s c r i p t i o n of the FAD i n Chapter 3 , the FAD focuses on a s p e c t s o f f a m i l y f u n c t i o n i n g r e l a t e d to the members' w e l l - b e i n g and emotional h e a l t h . F a m i l i e s with h e a l t h y f u n c t i o n i n g e f f i c i e n t l y s o l v e problems. The s c o r e s o f the f a m i l i e s o f t h i s study were below s c o r e s of h e a l t h y f u n c t i o n i n g f a m i l i e s and those thought t o i n d i c a t e the f a m i l y f u n c t i o n i n g of the ge n e r a l p o p u l a t i o n . Turk (1964) and T r a v i s (1976) suggest that f a m i l i e s under s t r e s s focus so much energy on the n e c e s s i t i e s of l i f e t h a t they have l i t t l e l e f t f o r problem s o l v i n g , f a m i l y f u n , and a d u l t a c t i v i t i e s . Such may be the case with the f a m i l i e s of t h i s s t udy. Or perhaps the f a m i l i e s o f a d o l e s c e n t s with CF have so many problems t o fa c e t h a t they are unable to r e s o l v e many of them. The low mean communication scor e o f the f a m i l i e s i n d i c a t e t h a t the f a m i l i e s l i k e l y had u n c l e a r i n d i r e c t v e r b a l communication. When such communication o c c u r s , i t i s o f t e n not w e l l expressed or p e r c e i v e d . Thus, misunderstandings are p o s s i b l e , and s o r t i n g out f e e l i n g s and problems may be d i f f i c u l t , communication i s a v i t a l aspect of fa m i l y f u n c t i o n i n g . D i f f i c u l t i e s with communication may impact s i g n i f i c a n t l y on other a r e a s . Because of t h i s Barnard (1978), Boyle et a l . (1976), Rose and Thomas (1987), and Turk (1964) recommend that h e a l t h care p r o f e s s i o n a l s should promote f a m i l y communication f o r the b e n e f i t of f a m i l y f u n c t i o n i n g and fo r the w e l l being of the a d o l e s c e n t . These authors c l a i m that c l e a r communication i s necessary w i t h i n the fam i l y and between the f a m i l y and h e a l t h care p r o f e s s i o n a l s . Only then can f a m i l y f u n c t i o n i n g , the wel l - b e i n g of f a m i l y members, and the h e a l t h care of c h r o n i c a l l y i l l c h i l d r e n be maintained. The f a m i l i e s i n t h i s study rep o r t e d a low score on the FAD Scale of A f f e c t i v e Responsiveness. T h i s score was .07 below the score o f M i l l e r et a l ' s (1985) random sample and the suggested healthy c u t - o f f scores f o r the s c a l e . ( E p s t e i n et a l . , 1983). T h i s i n d i c a t e s that the famil y members do not respond a p p r o p r i a t e l y to each other. The f a m i l i e s r e p o r t e d that they were not a l l that s u p p o r t i v e of the f e e l i n g s of members. Such a s i t u a t i o n could be d i f f i c u l t when a fami l y member has f e e l i n g s such as a n x i e t y which other f a m i l y members may not respond to a p p r o p r i a t e l y . The A f f e c t i v e Responsiveness of the f a m i l y may a l s o be hindered i f members do not openly communicate t h e i r f e e l i n g s . Such may al r e a d y be the case f o r the f a m i l i e s of t h i s sample. F i n a l l y , the A f f e c t i v e Involvement score of the s u b j e c t s was lower than the suggested h e a l t h y c u t - o f f score but higher than the score of the random sample. The f a m i l i e s of t h i s study r e p o r t e d they e i t h e r were under or over i n v o l v e d with each o t h e r . According to E p s t e i n et a l . (1983) d i s t u r b e d f a m i l i e s show a lack of too much involvement. I t i s p o s s i b l e that the f a m i l i e s of t h i s study were more i n v o l v e d with each other f o r the treatment o r i e n t e d domains of R o l e s , Behavior C o n t r o l , and General F u n c t i o n i n g but not f o r the more s o c i a l domains of Problem S o l v i n g , Communication, or A f f e c t i v e Responsiveness. Such a c o n c l u s i o n r e f l e c t s Turk's (1964) d e s c r i p t i o n of f a m i l i e s with an adolescent with CF. Turk' says the f a m i l i e s were i s o l a t e d i n t h e i r f e e l i n g s f o r each other due to problems i n t h e i r communication p a t t e r n s which may have stemmed from f a t i g u e r e s u l t i n g from h e c t i c treatment regimes. Though FAD scores of the f a m i l i e s were not f a r below those d e s c r i b e d by M i l l e r et a l . (1985) f o r the general p o p u l a t i o n , t h e i r scores are of concern f o r two reasons. F a m i l i e s with a c h r o n i c a l l y i l l member may need t o f u n c t i o n b e t t e r than h e a l t h y f a m i l i e s to ensure t h e i r needs a r e met (Bishop e t a l . , 1986b); and f a m i l y f u n c t i o n i n g i s thought to have an important e f f e c t on the s e l f - c o n c e p t development of a d o l e s c e n t s (Bishop et a l . , 1984; O f f e r et a l . , 1982). The f a m i l i e s of t h i s study d i d not report scores i n d i c a t i v e of b e t t e r f u n c t i o n i n g than the general p o p u l a t i o n . T h e r e f o r e , t h e f a m i l i e s may n o t h a v e b e e n a b l e t o f u n c t i o n w e l l e n o u g h t o f u l f i l l a l l o f t h e f a m i l y ' s and f a m i l y members' n e e d s . E x a c t l y what i n f l u e n c e d t h e FAD s c o r e s i n a l o w d i r e c t i o n i s n o t c l e a r . H o w e v e r , a m a j o r f a c t o r was t h a t a l l o f t h e f a m i l i e s i n c l u d e d a n a d o l e s c e n t w i t h CF. L i v i n g w i t h CF i s s t r e s s f u l f o r many f a m i l i e s and a c c o r d i n g t o S t e i n h a u s e n and S c h i n d l e r ( 1 9 8 1 ) and T r a v i s ( 1 9 7 6 ) , f a m i l y f u n c t i o n i n g o f t h i s p o p u l a t i o n i s n e g a t i v e l y a f f e c t e d by d a i l y s t r e s s f u l e x p e r i e n c e s . The n e x t c o n c e r n a b o u t s u b j e c t s ' r e p o r t e d d i f f i c u l t i e s i n f a m i l y f u n c t i o n i n g and t h e p o s s i b l e n e g a t i v e i m p a c t o f t h i s on t h e s e l f - c o n c e p t d e v e l o p m e n t o f a d o l e s c e n t s w i t h CF i s d i s c u s s e d i n t h e l a s t s e c t i o n o f t h i s c h a p t e r . The R e l a t i o n s h i p Of S e l f - C o n c e p t a n d F a m i l y F u n c t i o n i n g C o n t r a r y t o l i t e r a t u r e , f a m i l y f u n c t i o n i n g i n t h i s s a m p l e a p p e a r e d t o be n e g a t i v e l y r e l a t e d t o t h e d e v e l o p m e n t o f a d o l e s c e n t s e l f - c o n c e p t (DeWet & Cwyes, 1984; L e w i s & Khaw, 1 9 8 2 ; O f f e r e t a l . , 1 9 8 1 b ) . R a t h e r t h a n f a m i l y f u n c t i o n i n g b e i n g t h e most i m p o r t a n t d e t e r m i n a n t o f s e l f - c o n c e p t a s O f f e r e t a l . s u g g e s t , i t was n e g a t i v e l y r e l a t e d t o t h e a d o l e s c e n t s ' h i g h s e l f -c o n c e p t s c o r e s . The A f f e c t i v e i n v o l v e m e n t S c a l e o f t h e FAD was r e p r e s e n t e d i.n t h r e e o f t h e f i v e n e g a t i v e S p e a r m a n r h o c o r r e l a t i o n c o e f f i c i e n t s . C o m m u n i c a t i o n an d P r o b l e m S o l v i n g a r e t h e r e m a i n i n g FAD s c a l e s r e p r e s e n t e d i n t h e n e g a t i v e c o r r e l a t i o n c o e f f i c i e n t s . As p r e v i o u s l y d i s c u s s e d , t h e n e g a t i v e c o e f f i c i e n t s n o t e d i n T a b l e 6 a p p e a r e d r e a s o n a b l e b e c a u s e t h e two d a t a c o l l e c t i o n i n s t r u m e n t s s h a r e t h e same d i r e c t i o n a l i t y . F u r t h e r m o r e , l o w mean s c o r e s o f f a m i l i e s on t h e FAD s c a l e s w e r e r e l a t e d t o h i g h mean s c o r e s o f a d o l e s c e n t s on t h e OSIQ s c a l e s i n f i v e S pearman r h o c o r r e l a t i o n c o e f f i c i e n t s . T h e s e d a t a i n d i c a t e t h a t a n e g a t i v e r e l a t i o n s h i p e x i s t s b e t w e e n some o f t h e v a r i a b l e s o f f a m i l y f u n c t i o n i n g a n d a d o l e s c e n t s e l f -c o n c e p t . D e v e l o p m e n t a l t h e o r i s t s a d a m a n t l y c l a i m t h a t h e a l t h y f a m i l y f u n c t i o n i n g i s n e c e s s a r y f o r t h e h e a l t h y d e v e l o p m e n t o f s e l f - c o n c e p t ( E r i k s o n , 1968; F r e u d , 1 9 0 5 ; O f f e r e t a l . , 1 9 8 1 b ) . Why t h e a d o l e s c e n t s r e p o r t e d s c o r e s i n d i c a t i v e o f a w e l l d e v e l o p e d s e l f - c o n c e p t when t h e i r f a m i l y f u n c t i o n i n g was r e p o r t e d l y d e c r e a s e d i s n o t c l e a r . S m i t h e t a l . ( 1 9 8 3 ) c l a i m t h a t t h e s e r v i c e s p r o v i d e d t o t h e a d o l e s c e n t s by a m u l t i d i s c i p l i n a r y t e a m o f h e a l t h c a r e p r o f e s s i o n a l s may b o l s t e r t h e d e v e l o p m e n t o f s e l f - c o n c e p t i n a d o l e s c e n t s w i t h CF. P e r h a p s t h e a d o l e s c e n t s o f t h i s s t u d y p e r c e i v e d h e l p f r o m o t h e r s o c i a l s u p p o r t s f r o m t h e m u l t i d i s c i p l i n a r y CF C l i n i c w h i c h may h a v e h e l p e d i n a d o l e s c e n t s ' d e v e l o p m e n t o f s e l f - c o n c e p t . Summary The sample o f t h i s study was d e s c r i b e d . R e s u l t s of the OSIQ, FAD, and t h e i r Spearman rho c o r r e l a t i o n c o e f f i c i e n t s were p r e s e n t e d and d i s c u s s e d . The a d o l e s c e n t s with CF i n t h i s study r e p o r t e d w e l l developed s e l f - c o n c e p t s and t h e i r f a m i l i e s r e p o r t e d l e s s than h e a l t h y f a m i l y f u n c t i o n i n g . CHAPTER 5 Summary, c o n c l u s i o n s , I m p l i c a t i o n s , and Recommendations Summary The r e l a t i o n s h i p between f a m i l y f u n c t i o n i n g and the development of a s e l f - c o n c e p t i n a d o l e s c e n t s with CF was i n v e s t i g a t e d w i t h a d e s c r i p t i v e c o r r e l a t i o n a l study. Two data c o l l e c t i o n i n s t r u m e n t s were mailed t o a convenience sample o f 38 f a m i l i e s . S e l f - a p p o i n t e d a d o l e s c e n t s u b j e c t s w i t h CF (N=22) from urban, suburban, and r u r a l areas o f B.C. and some of t h e i r f a m i l y members (N=34) responded t o the study. The a d o l e s c e n t s completed a s e l f - c o n c e p t q u e s t i o n n a i r e (OSIQ) and they and t h e i r responding f a m i l y members completed a f a m i l y f u n c t i o n i n g q u e s t i o n n a i r e (FAD). A Demographic Data Sheet was completed by one parent i n each f a m i l y . Data c o l l e c t i o n i nstruments were r e t u r n e d t o the r e s e a r c h e r by m a i l . The a d o l e s c e n t s ' mean s c a l e , " S e l f " , and t o t a l OSIQ s c o r e s were compared t o standard r e f e r e n c e group means and standard d e v i a t i o n s . OSIQ sc o r e s were reviewed to note i n d i v i d u a l d i f f e r e n c e s . F a m i l i e s ' mean s c a l e s c o r e s on the FAD were compared t o those o f a random sample thought to be s i m i l a r t o the g e n e r a l p o p u l a t i o n ( M i l l e r et a l . , 1985) and to the suggested h e a l t h y c u t - o f f s c o r e s f o r the FAD ( E p s t e i n et a l . , 1983) . The Spearman rho c o r r e l a t i o n procedure was used t o compare a l l p o s s i b l e s c a l e p a i r s o f OSIQ and FAD 83 d a t a . The a d o l e s c e n t s d e s c r i b e d t h e m s e l v e s a s h a v i n g w e l l d e v e l o p e d s e l f - c o n c e p t s w i t h two e x c e p t i o n s . F e m a l e s a g e d 13-15 y e a r s a n d a l l m a l e s u b j e c t s r e p o r t e d c o n c e r n s a b o u t Body a n d S e l f - i m a g e w i t h mean s c o r e s b e l o w t h e s t a n d a r d mean o f 50 f o r t h e OSIQ. F e m a l e a nd m a l e a d o l e s c e n t s a g e d 13-15 y e a r s had c o n c e r n s a b o u t s e x u a l i t y a s m e a s u r e d b y t h e S e x u a l A t t i t u d e s S c a l e o f t h e S e x u a l S e l f . The n i n e r e m a i n i n g OSIQ mean s c a l e s c o r e s o f t h e a d o l e s c e n t s r a n g e d f r o m .06 t o 1.23 s t a n d a r d d e v i a t i o n s (SD=15) a b o v e t h e s t a n d a r d mean. F a m i l y f u n c t i o n i n g r e s u l t s w e r e s i m i l a r t o t h e s c o r e s o f r a n d o m l y s e l e c t e d r e p o r t e d l y h e a l t h y f a m i l i e s on t h e B e h a v i o r C o n t r o l a n d G e n e r a l F u n c t i o n i n g S c a l e s o f t h e FAD ( M i l l e r e t a l . , 1 9 8 5 ) . The s a m p l e h a d s l i g h t l y l o w e r s c o r e s t h a n t h o s e s u g g e s t e d f o r h e a l t h y f u n c t i o n i n g f a m i l i e s ( E p s t e i n e t a l . , 1983) on t h e FAD s c a l e s o f P r o b l e m S o l v i n g , C o m m u n i c a t i o n , A f f e c t i v e R e s p o n s i v e n e s s , a n d A f f e c t i v e I n v o l v e m e n t . The f a m i l i e s ' s c o r e on t h e R o l e s S c a l e was h i g h e r t h a n s c o r e s s u g g e s t e d by a u t h o r s o f t h e FAD ( E p s t e i n , 1 9 8 3 ; M i l l e r , 1 9 8 5 ) . R o l e s w e r e r e p o r t e d l y w e l l d e f i n e d i n t h e s e f a m i l i e s , p o s s i b l y a s a r e s u l t o f t h e i r d e a l i n g s w i t h t h e demands o f t r e a t m e n t r e g i m e s . H o w e v e r , t h o u g h f a m i l i e s may h a v e w e l l d e f i n e d r o l e s , t h e y may h a v e d i f f i c u l t i e s w i t h some a r e a s o f f a m i l y f u n c t i o n i n g s u c h a s , c o m m u n i c a t i o n a n d i n f e e l i n g a n d r e s p o n d i n g e m o t i o n a l l y with each o t h e r . In t h i s study, f a m i l y f u n c t i o n i n g was n e g a t i v e l y r e l a t e d t o the development of s e l f - c o n c e p t i n a d o l e s c e n t s with CF. F i v e n e g a t i v e c o e f f i c i e n t s r e s u l t e d from the use of the Spearman rho c o r r e l a t i o n procedure on FAD and OSIQ s c a l e p a i r s . R e s p e c t i v e l y , The A f f e c t i v e Involvement of the f a m i l y was n e g a t i v e l y r e l a t e d t o the a d o l e s c e n t s ' l a c k of Psychopathology, h e a l t h y Emotional Tone, and a b i l i t y t o have impulse C o n t r o l . The problem S o l v i n g a b i l i t y of the f a m i l y was n e g a t i v e l y r e l a t e d t o the a d o l e s c e n t s ' sense of Mastery o f the E x t e r n a l World. Communication w i t h i n the f a m i l y was n e g a t i v e l y r e l a t e d to the h e a l t h y Emotional Tone of the a d o l e s c e n t . . Reasons f o r these n e g a t i v e f i n d i n g s are not c l e a r , e s p e c i a l l y s i n c e developmental t h e o r i s t s c l a i m t h a t h e a l t h y f u n c t i o n i n g f a m i l i e s are the major determinant of a w e l l developed a d o l e s c e n t s e l f - c o n c e p t . The s u b j e c t s of t h i s study r e p o r t e d l e s s than h e a l t h y f a m i l y f u n c t i o n i n g . However, the s u p p o r t i v e r o l e of the CF C l i n i c s t a f f may promote the development of a s e l f -concept i n a d o l e s c e n t s with CF as d e s c r i b e d by Smith et a l . (1983). The c l i n i c s t a f f have r e g u l a r c o n t a c t with the a d o l e s c e n t s and promote t h e i r h e a l t h with a m u l t i d i s c i p l i n a r y approach. The s t a f f know the a d o l e s c e n t s and some of t h e i r f a m i l y members. S t a f f are o f t e n i n v o l v e d i n r e s o l u t i o n of d i f f i c u l t i e s of treatment and of f a m i l y upsets, thus p r o v i d i n g a s o c i a l support f o r a d o l e s c e n t s and t h e i r f a m i l i e s . C o n c l u s i o n s The f o l l o w i n g c o n c l u s i o n s are based on the f i n d i n g s of t h i s study. 1. Adolescents with CF have w e l l developed s e l f - c o n c e p t s i n nine of the eleven areas measured by the OSIQ. 2. Adolescents with CF, except f o r females aged 16 to 19 years, have concerns about Body and Self-image as evaluated by the OSIQ. 3. Male and female a d o l e s c e n t s aged 13 to 15 years have concerns a f f e c t i n g t h e i r Sexual S e l v e s . 4. F a m i l i e s of a d o l e s c e n t s with CF have l e s s than healthy f u n c t i o n i n g as assessed by the FAD i n the domains of Problem S o l v i n g , Communication, A f f e c t i v e Responsiveness, and A f f e c t i v e Involvement. 5. F a m i l i e s of a d o l e s c e n t s with CF have b e t t e r than average Role f u n c t i o n i n g as evaluated by the FAD. 6. Family f u n c t i o n i n g and development of adolescent s e l f - c o n c e p t are n e g a t i v e l y r e l a t e d i n the r e s p e c t i v e FAD/OSIQ domains of Communication and Emotional Tone, A f f e c t i v e Involvement and Emotional Tone, A f f e c t i v e Involvement and Psychopathology, A f f e c t i v e Involvement and Impulse C o n t r o l , and Problem S o l v i n g and Mastery of the E x t e r n a l World. 86 I m p l i c a t i o n s f o r Nursing Nurses have frequent contact with adolescents with CF and some of t h e i r f a m i l y members during c l i n i c v i s i t s and h o s p i t a l admissions. These nurses should be aware that adolescents with CF may have concerns about t h e i r body and s e l f - i m a g e . Younger ad o l e s c e n t s of both sexes may have concerns about s e x u a l i t y . Nursing assessments of adolescents with CF should o b t a i n data about the a d o l e s c e n t ' s s e l f - c o n c e p t through i n t e r v i e w s and the use of s e l f - c o n c e p t q u e s t i o n n a i r e s . In assessment, nurses should watch f o r behaviors such as withdrawal, poor eye c o n t a c t , and negative comments about themselves that i n d i c a t e the adolescent has d i f f i c u l t i e s r e g a r d i n g body and so that even self-image and s e x u a l i t y so that even q u i e t a d o l e s c e n t s can o b t a i n the support they need. Nurses may be able to help adolescents with CF to develop coping behaviors to d e a l with d i f f i c u l t i e s r e l a t e d to CF and i t s treatment. For example, nurses can teach them about adolescent growth and development and s e x u a l i t y . Adolescents may then be more aware that many of the changes that they experience are normal. Adolescents who are very concerned about t h e i r appearance, low weight, and b r e a t h i n g d i f f i c u l t i e s might b e n e f i t from n u r s e s ' recommendations on how to d i s g u i s e these problems so that they can blend i n with t h e i r peer group. The a d o l e s c e n t s o f t h i s study might b e n e f i t from s h a r i n g t h e i r concerns about body and self-image and s e x u a l i t y . Nurses c o u l d promote the formation of support groups f o r a d o l e s c e n t s with CF which c o u l d be l e d by nurses s k i l l e d i n d e a l i n g with adolescents with CF. Guided d i s c u s s i o n s among adolescents with CF may help the adolescents t o gain emotional and p r a c t i c a l support from each o t h e r , such as ways that they d e a l with the problems of CF and the demands of treatment. Nurses who work with f a m i l i e s o f adolescents with CF should be aware that the f a m i l i e s may experience decreased f u n c t i o n i n g . These f a m i l i e s experience communication d i f f i c u l t i e s , i n a b i l i t y to r e l i e v e s t r e s s , and f a m i l y members' i n a b i l i t y to f e e l i n v o l v e d with and respond a p p r o p r i a t e l y to each o t h e r . Nurses should t h e r e f o r e assess these areas of f a m i l y f u n c t i o n i n g . I f ongoing or e p i s o d i c d i f f i c u l t i e s i n f a m i l y f u n c t i o n i n g appear, these should be i n v e s t i g a t e d . Nurses may c o l l a b o r a t e with other h e a l t h p r o f e s s i o n a l s i n contact with these f a m i l i e s r e g a r d i n g f u r t h e r assessments, i n t e r v e n t i o n s , and r e f e r r a l s . Nurses should recommend that parents of ado l e s c e n t s with CF might b e n e f i t from sharing i n f o r m a t i o n and emotional support i n groups f o r parents run by the CF A s s o c i a t i o n ' s l o c a l chapters i n B.C. Support f o r parents c o u l d i n c l u d e education about communication and pro b l e m - s o l v i n g s k i l l s . F a m i l i e s who have d i f f i c u l t y with a f f e c t i v e responsiveness c o u l d perhaps b e n e f i t from f a m i l y c o u n s e l l i n g . A l s o , nurses can educate parents about adolescent growth and development while f o c u s i n g on the body and sel f - i m a g e , perhaps i f parents are aware of t h e i r a d o l e s c e n t s ' concerns they w i l l be b e t t e r able to h e l p t h e i r a d o l e s c e n t s . A v a i l a b i l i t y of the c l i n i c a l nurse s p e c i a l i s t may be of a s s i s t a n c e to ado l e s c e n t s with CF and t h e i r f a m i l i e s . In a d d i t i o n t o being an ongoing support, the c l i n i c a l nurse s p e c i a l i s t p r o v i d e s education f o r the adolescents and t h e i r f a m i l i e s . T h i s nurse has continued contact with t h i s p o p u l a t i o n and t h e r e f o r e knows the p a t t e r n s of i n t e r a c t i o n and the p e r s o n a l i t i e s of the f a m i l y members. T h e r e f o r e , the c l i n i c a l nurse s p e c i a l i s t i s i n a p o s i t i o n to pr o v i d e ongoing emotional, p h y s i c a l , and e d u c a t i o n a l support f o r adolescents with CF and t h e i r f a m i l i e s . Recommendations f o r Further Research The s i z e of the sample i n t h i s study l i m i t s g e n e r a l i z a t i o n of r e s u l t s , p a r t i c u l a r l y regarding the w e l l developed s e l f - c o n c e p t and diminished f a m i l y f u n c t i o n i n g of t h i s p o p u l a t i o n . The study should be r e p l i c a t e d t o v a l i d a t e the f o r e g o i n g . Larger samples c o u l d be o b t a i n e d i n m u l t i - c e n t e r r e s e a r c h p r o j e c t s . For example, the CF c l i n i c s i n l a r g e Canadian c i t i e s c o u l d p o o l t h e i r p o p u l a t i o n s o f a d o l e s c e n t s with CF and t h e i r f a m i l i e s t o p r o v i d e a l a r g e r sample than the one a v a i l a b l e f o r t h i s study. A l s o , response r a t e s c o u l d be i n c r e a s e d by p e r s o n a l c o n t a c t r a t h e r than a mailed survey f o r the c o l l e c t i o n of d a t a . Probably a l a r g e r number o f s u b j e c t s would p a r t i c i p a t e i f i t i s l e s s c o m p l i c a t e d to complete and r e t u r n data c o l l e c t i o n i n s t r u m e n t s . T h i s would be b e n e f i c i a l f o r two r e a s o n s . F i r s t , s e l f - r e p o r t q u e s t i o n n a i r e s have an i n h e r e n t r e l a t i o n s h i p t o s o c i a l d e s i r a b i l i t y (Wylie, 1 9 7 9 ) . Complete anonymity c o u l d be guaranteed i f s u b j e c t s ' names were not r e q u i r e d f o r f o l l o w - u p . Guaranteed anonymity c o u l d improve the q u a l i t y of responses to data c o l l e c t i o n i n s t r uments. T h i s might occur because s u b j e c t s l i k e l y would be l e s s a f f e c t e d by a wish f o r s o c i a l d e s i r a b i l i t y and would d i s c l o s e more t r u t h f u l and complete i n f o r m a t i o n . Second, other methodologies from the q u a l i t a t i v e approach such as s t r u c t u r e d i n t e r v i e w s might round out r e s u l t s from s e l f - r e p o r t q u e s t i o n n a i r e s . F u r t h e r q u a l i t a t i v e i n v e s t i g a t i o n of the body and s e l f - i m a g e of a d o l e s c e n t s w i t h CF i s warranted because s e l f - r e p o r t measures may omit s a l i e n t a s p e c t s of the i n d i v i d u a l ' s phenomenal environment (Wylie, 1 9 7 9 ) . More knowledge about the body and s e l f - i m a g e and s e x u a l i t y p e r c e p t i o n s o f a d o l e s c e n t s with CF would p r o v i d e f u r t h e r d i r e c t i o n f o r n u r s i n g p r a c t i c e . A l s o , reasons f o r the v a r i a n c e i n OSIQ sc o r e s among age and sex a p p r o p r i a t e groups c o u l d be addressed by f u r t h e r q u a l i t a t i v e and q u a n t i t a t i v e s t u d i e s . Future s t u d i e s c o u l d compare s e l f - c o n c e p t s c o r e s o f a d o l e s c e n t s with CF t o other groups of c h r o n i c a l l y i l l a d o l e s c e n t s to determine s i m i l a r i t i e s or d i f f e r e n c e s i n t h e i r s e l f - c o n c e p t . I f c h r o n i c a l l y i l l a d o l e s c e n t s r o u t i n e l y d e s c r i b e concerns about t h e i r body and s e l f - i m a g e and s e x u a l i t y t h a t are s i m i l a r t o those o f t h i s sample, t h i s knowledge would p r o v i d e f u r t h e r d i r e c t i o n f o r n u r s i n g p r a c t i c e . L o n g i t u d i n a l and/or c r o s s s e c t i o n a l s t u d i e s of f a m i l i e s with c h i l d r e n with.CF of v a r i o u s ages might determine whether f a m i l y f u n c t i o n i n g v a r i e s with the age of the c h i l d with CF. A q u a l i t a t i v e study might be a p p r o p r i a t e t o determine f a m i l i e s ' p e r c e p t i o n s of how they f u n c t i o n when they have an ad o l e s c e n t with CF. Q u a l i t a t i v e and q u a n t i t a t i v e i n v e s t i g a t i o n o f f a m i l y p r o b l e m - s o l v i n g , • communication, and a f f e c t i v e involvement i s a l s o warranted. 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Manual on adolescence. Vancouver, BC: Hemlock Printers. Travis, G. (1976). Chronic i l l n e s s i n children: Its impact on the family. Stanford, CA: Stanford University Press. Turk, J. (1964). The psychosocial impact of cystic fibrosis. Pediatrics, 34, 67-71. Van der Veen, F. & Olson, R. (1981). Manual and handbook for the family assessment method. Unpublished manuscript. Wylie, R. (1974). The self-concept: A review of methodological considerations. Lincoln, NE: University of Nebraska Press. Wylie, R. (1979). The self-concept: Theories and research on selected topics. Lincoln, NE: University of Nebraska Press. Appendix A Let ter of Information Famil ies and Teenagers with CF My name i s Isabel le Mac Lecd, R.N. My Master 's thes is fo r the Universi ty of Br i t ish . Columbia investigates how teenagers and t h e i r fami l ies cope with CF. My keen in terest i n t h i s top ic began while I was head nurse on the adolescent un i t a t B.C. Chi ldren 's Hospital (BCCH). Much research now focuses on CF and I hope to add valuable information t o t h i s e f f o r t . This study was approved by the CF C l i n i c and BCCH and i s funded by the Canadian Lung Associa t ion . Teenagers and parents res id ing together i n your family should complete the Family Assessment Device separately, anonymously and honestly. One parent should f i l l out the Demographic Data Sheet. The teenager with CF should conf ident ia l l y complete the Offer Self-image Questionnaire. A l l o f the responses should be shared only with" t h i s researcher. Please complete « n ident i fy ing information and answer a l l the questions on the questionnaires. A l l questionnaires w i l l be seen only by t h i s researcher and w i l l be coded and grouped f o r ana lys is . Conf ident ia l i ty i s guarranteed. You may recieve a summary of the resu l ts i f you l i k e . You are under no ob l iga t ion t o par t ic ipa te and your decis ion w i l l not a f fec t your present or future health care i n any way. The f indings may improve the qua l i t y o f heal th care f o r adolescents with CF and t h e i r f ami l i es . Please read and s ign the consent forms i f you wish to par t i c ipa te and return a l l materials to me i n the stamped envelope provided. Sincere thanks, Isabel le Mac Lecd, R .N . ,B .N. 98 Parents' Consent Form I have read the l e t t e r o f information about the study "Families and Teenagers with CF" . I understand the purpose of t h i s study and what i s required of me as a pa r t i c ipan t . Parent(s) s igniature Date Teenager's Consent Form I have read the l e t t e r of information descr ib ing the study "Famil ies and Teenagers with CF" . I understand what i s required of me as a par t ic ipant , that my information w i l l be kept s t r i c t l y conf iden t ia l and that I am free t o withdraw without question a t any t ime. I understand that my dec is ion regarding p a r t i c i p a t i o n i n the study w i l l not jeapordize my heal th care i n any way. Teenager's s igniature Date Appendix B T H E O F F E R SELF- IMAGE QUESTIONNAIRE FOR A D O L E S C E N T S SECOND EDITION 101 I N T R O D U C T I O N T O THE OFFER SELF - I M A G E Q U E S T I O N N A I R E THIS Q U E S T I O N N A I R E IS U S E D F O R SCIENTIFIC P U R P O S E S . T H E R E ARE N O RIGHT O R W R O N G A N S W E R S AFTER C A R E F U L L Y R E A D I N G E A C H O F T H E S T A T E M E N T S O N T H E F O L L O W I N G P A C E S , PLEASE C IRCLE T H E N U M B E R O N THE A N S W E R SHEET T H A T I N D I C A T E S H O W WELL THE I T E M D E S C R I B E S Y O U : T H E N U M B E R S C O R R E S P O N D W I T H C A T E G O R I E S T H A T R A N G E F R O M "DESCRIBES M E V E R Y W E L L " (1) T O " D O E S N O T DESCRIBE M E AT A L L " (6). PLEASE CIRCLE O N L Y O N E C H O I C E F O R E A C H S T A T E M E N T . E X A M P L E S T A T E M E N T : I A M A N A D O L E S C E N T . C H O I C E O F A N S W E R S : 1 — D E S C R I B E S M E V E R Y W E L L 3 — D E S C R I B E S M E F A I R L Y W E L L 5 — D O E S N O T R E A L L Y D E S C R I B E M E 2 — D E S C R I B E S M E W E L L 4 — D O E S N O T Q U I T E D E S C R I B E M E 6 — D O E S N O T D E S C R I B E M E A T A L L R E S P O N S E : 0 2 3 4 5 6 PLEASE R E S P O N D T O ALL ITEMS. T H A N K Y O U C O P Y R I G H T : 1977 <£ DANIEL OFFER. M . D 102 1- DESCRIBES ME VERY WELL 3»DESCRIBt:> ME FAIRLY WELL 5-DOES NOT REALLY DESCRIBE ME 2- DESCRIBES ME WELL 4-DOES NOT QUITE DESCRIBE ME 6--DOES NOT DESCRIBE ME AT ALL 1. I CARRY MANY GRUDGES. 1-2. WHEN I AM WITH PEOPLE I AM AFRAID THAT SOMEONE WILL MAKE FUN OF ME. 2_ 3. MOST OF THE TIME I THINK THAT THE WORLD IS AN EXCITING PLACE TO LIVE IN. 3_ A. I THINK THAT I WILL BE A SOURCE OF PRIDE TO MY PARENTS IN THE FUTURE. 4_ 5. I WOULD NOT HURT SOMEONE JUST FOR THE "HECK OF IT." 5_ 6. THE RECENT CHANGES IN MY BODY HAVE GIVEN ME SOME SATISFACTION. 6_ 7. I AM GOING TO DEVOTE MY LIFE TO HELPING OTHERS. 7-8. I "LOSE MY HEAD" EASILY. 8_ 9. MY PARENTS ARE ALMOST ALWAYS ON THE SIDE OF SOMEONE ELSE, e.g. MY BROTHER 9_ OR SISTER. 10. THE OPPOSITE SEX FINDS ME A BORE. TO-IL IF I WOULD BE SEPARATED FROM ALL THE PEOPLE I KNOW, I FEEL THAT I WOULD NOT 11-BE ABLE TO MAKE AGO OF IT. 12. I FEEL TENSE MOST OF THE TIME. 12-13. I USUALLY FEEL OUT OF PLACE AT PICNICS AND PARTIES. 13-1-1. 1 FEEL THAT WORKING IS TOO MUCH RESPONSIBILITY FOR ME. I4-15. MY PARENTS WILL BE DISAPPOINTED IN ME IN THE FUTURE. 15. 16. IT IS VERY HARD FOR A TEENAGER TO KNOW HOW TO HANDLE SEX IN A RIGHT WAY. 16. 17. AT TIMES I HAVE FITS OF CRYING AND/OR LAUGHING THAT I SEEM UNABLE TO 17. CONTROL. 18. I AM GOING TO DEVOTE MY LIFE TO MAKING AS MUCH MONEY AS I CAN. 18-19. IF I PUT MY MIND TO IT, I CAN LEARN ALMOST ANYTHING. 19-20. ONLY STUPID PEOPLE WORK. 2 0-21. VERY OFTEN I FEEL THAT MY FATHER IS NO GOOD. 21. 22. I AM CONFUSED MOST OF THE TIME. 22_ 1 0 3 1- D E S C R I B E S M E V E R Y W E L L 3 - D E S C R I B E S M E F A I R L Y W E L L S - D O E S N O T R E A L L Y D E S C R I B E M E 2- - U E S C R 1 B E S M E W E L L 4 - D O E S N O T Q U I T E D E S C R I B E M E 6 - D O E S N O T D E S C R I B E M E A T A L L 23. | F E E L I N F E R I O R T O M O S T P E O P L E I K N O W . 23 . 2-4. U N D E R S T A N D I N G M Y P A R E N T S IS B E Y O N D M E . 24 . 25. I D O N O T L I K E T O P U T T H I N G S IN O R D E R A N D M A K E S E N S E O F T H E M . 25 . 26. 1 C A N C O U N T ON M Y P A R E N T S M O S T O F T H E T I M E . 26_ 27. IN T H E P A S T Y E A R I H A V E B E E N V E R Y W O R R I E D A B O U T M Y H E A L T H . 27 . ?S. D I R T Y J O K E S A R E F U N A T T I M E S . 2 8 . 29. I O F T E N B L A M E M Y S E L F E V E N W H E N 1 A M N O T A T F A U L T . 2 9 . 30. | W O U L D N O T S T O P A T A N Y T H I N G IF I F E L T I WAS D O N E W R O N G . 30_ 31. M Y S E X O R G A N S A R E N O R M A L . 31_ 32. M O S T O F T H E T I M E I A M H A P P Y . 32_ I A M G O I N G T O D E V O T E MYSELF T O M A K I N G T H E W O R L D A BETTER P L A C E T O LIVE IN 3 3 -34- I C A N T A K E CRIT IC ISM W I T H O U T R E S E N T M E N T . 34_ 35. M Y W O R K , IN G E N E R A L . IS A T L E A S T A S G O O D A S T H E W O R K O F T H E G I R L N E X T T O M E . 35_ 36. S O M E T I M E S I F E E L S O A S H A M E D O F M Y S E L F T H A T I JUST W A N T T O H I D E IN A C O R N E R 36_ A N D C R Y . 37 | A M S U R E T H A T I W I L L B E P R O U D A B O U T M Y F U T U R E P R O F E S S I O N . 37_ i S . M Y F E E L I N G S A R E E A S I L Y H U R T . 3 E _ 39. W H E N A T R A G E D Y O C C U R S T O O N E O F M Y F R I E N D S , I F E E L S A D T O O . 39_ 4.0. I B L A M E O T H E R S E V E N W H E N I K N O W T H A T I A M A T F A U L T T O O . 4 0 _ 45- W H E N I W A N T S O M E T H I N G . I J U S T SIT A R O U N D WISHING I C O U L D H A V E IT. 4 1 _ 41. T H E P I C T U R E I H A V E O F M Y S E L F IN T H E F U T U R E S A T I S F I E S M E . 4 2 _ 43. 1 A M A S U P E R I O R S T U D E N T IN S C H O O L . 43 . . 44- I F E E L R E L A X E D U N D E R N O R M A L C I R C U M S T A N C E S . - 44 . . 104 1-OESCRIBCS ML VERY WELL 3--DESCRIBES M9 FAIRLY WELL S-DOES NOT REALLY DESCRIBE ME -^DESCRIBES ME WELL 4-POES NOT QUITE DESCRIBE ME 6-DOES NOT DESCRIBE ME AT ALL 45. 1 FEEL EMPTY EMOTIONALLY MOST OF THE TIME , ' 45 46. I WOULD RATHER SIT AROUND AND LOAF THAN WORK 46 47. EVEN IF IT WERE DANGEROUS, I WOULD HELP SOMEONE WHO IS IN TROUBLE. ~~ 48. TELLING THE TRUTH MEANS NOTHING TO ME. 4S 49. OUR SOCIETY IS A COMPETITIVE ONE AND I AM NOT AFRAID OF IT. 4& 50. I GET VIOLENT IF I DONT GET MY WAY. 50 51. MOST OF THE TIME MY PARENTS GET ALONG WELL WITH EACH OTHER. 51 52. I THINK THAT OTHER PEOPLE )UST DO NOT LIKE ME. 52 53. I FIND IT VERY DIFFICULT TO ESTABLISH NEW FRIENDSHIPS. 53 54. I AM SO VERY ANXIOUS. 5-: 55. WHEN MY PARENTS ARE STRICT. I FEEL THAT THEY ARE RIGHT. EVEN IF I GET ANCRY 55 56. WORKING CLOSELY WITH ANOTHER GIRL NEVER GIVES ME PLEASURE. 56 57. I AM PROUD OF MY BODY. 5" 58. AT TIMES I THINK ABOUT WHAT KfND OF WORK I WILL DO IN THE FUTURE. 5S S3, EVEN UNDER PRESSURE I MANAGE TO REMAIN CALM. 59 60. WHEN I GROW UP AND HAVE A FAMILY. IT WILL BE IN AT LEAST A FEW WAYS SIMILAR TO 60 MY OWN. 61. I OFTEN FEEL THAT I WOULD RATHER DIE. THAN GO ON LIVING. 61 61 I FIND IT EXTREMELY HARD TO MAKE FRIENDS. 62 fc3 I WOULD RATHER BE SUPPORTED FOR THE REST OF MY LIFE THAN WORK. 63 M. I FEEL THAT I HAVE A PART IN MAKING FAMILY DECISIONS 6-1 I DO NOT MIND BEING CORRECTED. SINCE I CAN LEARN FROM IT. 65 FOR.COMPUTER USE ONLY 66-69 70_ 71-72 73-L 74 _ 752 76-80 1- DESCRIBES ME VERY WELL 2- "ESCRIBES ME WELL 3- DESCRIBES ME FAIRLY WELL 4- DOES NOT QUITE DESCRIBE ME 5- DOES NOT REALLY DESCRIBE ME 6- OOES NOT DESCRIBE ME AT ALL 66. 1 FEEL SO VERY LONELY. 66 67. I DO NOT CARE HOW MY ACTIONS AFFECT OTHERS AS LONG AS I GAIN SOMETHING. 67 68. I ENJOY LIFE. 68 69. I KEEP AN EVEN TEMPER MOST OF THE TIME. 69 70. A JOB WELL DONE GIVES ME PLEASURE. 70 71. MY PARENTS ARE USUALLY PATIENT WITH ME. 71 72. I SEEM TO BE FORCED TO IMITATE THE PEOPLE I LIKE. 72 73. VERY OFTEN PARENTS DO NOT UNDERSTAND A PERSON BECAUSE THEY HAD AN UNHAPPY 73 CHILDHOOD. 74. FOR ME GOOD SPORTSMANSHIP IN SCHOOL IS AS IMPORTANT AS WINNING A GAME. 74 75. I PREFER BEING ALONE THAN WITH KIDS MY AGE. 75 76. WHEN I DECIDE TO DO SOMETHING. I DO IT. 76 77. I THINK THAT BOYS FIND ME ATTRACTIVE. 77 78. OTHER PEOPLE ARE NOT AFTER ME TO TAKE ADVANTAGE OF ME. 78 79. I FEEL THAT THERE IS PLENTY I CAN LEARN FROM OTHERS. 79 80. I DO NOT ATTEND SEXY SHOWS. 80 81. I FEAR SOMETHING CONSTANTLY. 81 82. VERY OFTEN I THINK THAT I AM NOT AT ALL THE PERSON I WOULD LIKE TO BE. 82 83. I LIKE TO HELP A FRIEND WHENEVER I CAN. 83 84. IF I KNOW THAT I WILL HAVE TO FACE A NEW SITUATION. I WILL TRY IN ADVANCE TO 84 FIND OUT AS MUCH AS IS POSSIBLE ABOUT IT. 85. USUALLY I FEEL THAT I AM A BOTHER AT HOME. ' 85 86. IF OTHERS DISAPPROVE OF ME I GET TERRIBLY UPSET. 86 87. I LIKE ONE OF MY PARENTS MUCH BETTER THAN THE OTHER. 87 1 0 6 1 -DESCRIBES ME VERY WELL 3-DESCRIBES ME FAIRLY WELL 5--DOES N O T REALLY DESCRIBE ME 2-DESCRIBES ME WELL 4--DOE9N0T QUITE DESCRIBE ME G--D0ES" N O T DESCRIBE ME AT ALL 88. BEING TOGETHER WITH OTHER PEOPLE GIVES ME A GOOD FEELING. gl? . 39 WHENEVER I FAIL IN SOMETHING. I TRY TO FIND OUT WHAT I CArt DO IN ORDER TO AVOID 8 9 — ANOTHER FAILURE 90. I FREQUENTLY FEEL UGLY AND UNATTRACTIVE. 90 91. SEXUALLY I AM WAY BEHIND Qi 92. IF YOU CONFIDE IN OTHERS YOU ASK FOR TROUBLE. .92 93. EVEN THOUGH I AM CONTINUOUSLY ON THE GO. I SEEM UNABLE TO GET THINGS DONE. 93 94. WHEN OTHERS LOOK AT ME THEY MUST THINK THAT I AM POORLY DEVELOPED. 94 95. MY PARENTS ARE ASHAMED OF ME. 95 96. I BELIEVE I CAN TELL THE REAL FROM THE FANTASTIC. 96, 97. THINKING OR TALKING ABOUT SEX FRIGHTENS ME.- 97 98. I AM AGAINST GIVING SO MUCH MONEY TO THE POOR. 98 99. I FEEL STRONG AND HEALTHY. 99 100. EVEN WHEN I AM SAD I CAN EN|OY A GOOD JOKE. 100 101 THERE IS NOTHING WRONC WITH PUTTING ONESELF BEFORE OTHERS. 101 102. I TRY TO STAY AWAY FROM HOME MOST OF THE TIME. 102 103. I FIND LIFE AN ENDLESS SERIES OF PROBLEMS-WITHOUT SOLUTION IN SIGHT. 103 104. AT TIMES I FEEL LIKE A LEADER AND FEEL THAT OTHER KIDS CAN LEARN SOMETHING 104 FROM ME. 105. I FEEL THAT I AM ABLE TO MAKE DECISIONS. 105 106. I HAVE BEEN CARRYING A GRUDGE AGAINST MY PARENTS FOR YEARS. 106> * 107. I AM CERTAIN THAT I WILL NOT BE ABLE TO ASSUME RESPONSIBILITIES FOR MYSELF IN 107 THE FUTURE. 108. WHEN I ENTER A NEW ROOM I HAVE A STRANGE AND FUNNY FEELING. 108 109. I FEEL THAT I HAVE NO TALENT WHATSOEVER. 109 107 1- DESCRIBES ME VERY WELL 3-DESCRIBES ME FAIRLY WELL 5-DOES NOT REALLY DESCRIBE ME 2- DESCRIBES ME WELL 4--DOES NOT QUITE DESCRIBE ME 6-DOES NOT DESCRIBE ME AT ALL no. 1 DO NOT REHEARSE HOW 1 MIGHT DEAL WITH A REAL COMING EVENT. 110 m . WHEN 1 AM WITH PEOPLE 1 AM BOTHERED BY HEARING STRANGE NOISES. 111 112. MOST OF THE TIME MY PARENTS ARE SATISFIED WITH ME. 112 113. 1 DO NOT HAVE A PARTICULARLY DIFFICULT TIME IN MAKING FRIENDS. 113 114. 1 DO NOT ENJOY SOLVING DIFFICULT PROBLEMS. 114 115. SCHOOL AND STUDYING MEAN VERY LITTLE TO ME. 115 116. EYE FOR AN EYE AND TOOTH FOR A TOOTH DOES NOT APPLY FOR OUR SOCIETY. 116 117. SEXUAL EXPERIENCES GIVE ME PLEASURE. 117 118. VERY OFTEN 1 FEEL THAT MY MOTHER IS NO GOOD. 118 119. HAVING A BOYFRIEND IS IMPORTANT TO ME. 119 120. 1 WOULD NOT LIKE TO BE ASSOCIATED WITH THOSE KIDS WHO "HIT BELOW THE BELT." 120 121. WORRYING A LITTLE ABOUT ONE'S FUTURE HELPS TO MAKE IT WORK OUT BETTER. 121 122. 1 OFTEN THINK ABOUT SEX. 122 123. USUALLY 1 CONTROL MYSELF. 123 124. 1 ENJOY MOST PARTIES 1 GO TO. 124 125. DEALING WITH NEW INTELLECTUAL SUBJECTS IS A CHALLENGE FOR ME. 125 126. I DO NOT HAVE MANY FEARS WHICH 1 CANNOT UNDERSTAND. 126 127. NO ONE CAN HARM ME JUST BY NOT LIKING ME. 127 128. 1 AM FEARFUL OF GROWING UP. 128 . 129. 1 REPEAT THINGS CONTINUOUSLY TO BE SURE THAT 1 AM RIGHT. 129 130. 1 FREQUENTLY FEEL SAD. 130 FOR COMPUTER USE ONLY 66-69 7 0 — 71-72 7 3 i . 74 _ 75 2. 76-80 1 0 8 Appendix C Table C - l Alpha Coeficients of each OSIQ Scale C l a s s i f i e d by Age and Sex Younger Older Younger Older OSIQ scale ' Males Males Females Females ( n = 3 2 6 ) ( n = 1 9 2 ) (n -278) (n=15*0 Fsvchlolcrical Self (PS) Impulse Control .52 .69 .76 .70 Emotional Tone .40 .79 .78 .81 Body and Self-image .38 .62 .66 .56 Social Self (SS) Social Relationships .61 .76 .78 .71 Morals .60 .51 .56 .36 Vocat.-Educ. Goals .57 .69 .61 .61 Sexual Self (SeS) Sexual Attitudes .43 .55 .67 .48 Family Self (FS) Family Attitudes .57 .83 .87 .88 Copincr Self (CS) Mastery of the External World . .48 .58 .60 .61 Psychopathology .66 .73 .75 .68 Superior Adjustment .52 .60 .60 .61 * Offer ei: a l . ( 1 9 8 2 ) , p. 2.6. Appendix D Demographic Data Sheet For each person living in your household, please list the following information, indicating the nature of each person"s role in the house (e.g., husband, wife. son. daughter, sister, friend, grandmother, etc.). Education Total * Medical/ of Years Psychiatric Family Role First Name Religion Age Sex In School Problems II | | I I i I H A I Present marital status of heads of household: (check all that apply) Male Female Married only once Remarried Single Never married Divorced Separated Widowed Number of years in present marital status Number of previous marriages - (male) - (female) Total family income (all sources) during past year: (OPTIONAL) 9.999 19.999 29.999 39.999 49.999 ( ) ( ) ( ) .( ) ( ) $ 50.000-59.999 $ 60.000 - 69.999 $ 70.000-99.999 $100,000 + ( ) ( ) ( ) ( ) $ 0 $10,000 $20,000 $30,000 $40,000 Parents' Occupation: Do you identify with any specific ethnic group? If yes. check below the primary ethnic group. Western European (British. French. German, etc.) Eastern European (Russian. Polish, etc.) Mediterranean (Italian. Middle Eastern. North African, Greek, Cyprian, etc.) North American (U.S. American. Canadian) South American (Central and South American) Inuit Asian or Pacific Islander Whar is your race? Inuit Oriental Black Hispanic White FAMILY ASSESSMENT DEVICE Bfou-n Butk-r Family Re-^ earch Program A-ppcridix E I N S T R U C T I O N S : This booklet contains a number of statements about families. Please read each statement carefully, and decide how well it describes your own family; YOU should answer according :o how you see your family. For each statement there are four (4) possible responses: Strongly Agree (SA) Check SA if you fee! that the statement describes your family very accurately. Agree (A) Check A if you feel that the statement describes your Samily for t be" most pan. Disagree (D) Check D if you fee! that ;he statement does not describe your family for the mes; pan S)ron§5y Disagree (SD) Check SD if you fee: thai ihe starem n^r does not describe your family arall. These four responses will appear below each staf£m€nt like this: 4 1 . We are not satisfied wi'th anything short of perfection, . „ SA A D SD _ _ _ _ _ _ _ The answer spaces for statement 41 would kaok like this For .?a know vJhzk io do in an emergency ^ SA „_ A D SD 21. We avoid d\scuss»r>g our tears and cexverns. SA A' D SO 22. h is ciifJicuK to lalk. to each other about tender feelings. — SA A D SD _ 23. We have trouble meeting our bills! „ SA A D SD 24. Aft« Our family tries to sd\ie a pi&Hem. w* usual^ discuss wfjitoef.wscked cw~ AO I . SA A D _ _ _ _ _ S D . F A M I L Y A S S E S S M E N T D E V I C E Biowi^'Butler Family Research Program ID 25. We are too self-centered. SA A D SD 26 We can express feelings to each other. SA A D SD 27. We have no clear expectations about toilet habits. SA A D SD 2S. We do not show our love for each other. SA A D SD 29. We talk to people directly rather than through go-betweens. - SA A D SD 30. Each of us has-particular duties and responsibilities. SA A D SD 31. Trvfre are lois of bad feelings in the family. SA A D SD 32. We haye rules afroui hitung people. . SA A D SD 33. v\ie 3*1- involved with each other only when something interests us. SA A D SD 34. Ttv&e's little time ro explore personal interests. ^ SA A _ D SD 35. We 0"frhal we are. « _ — SE> FAMILY ASSESSMENT DEVICE Brou-n^BulIci Family Rcvcarch PiogTam ID 37. We show.' inieres; in each other when we can get something out of it personally. SA A D SD 3S We resolve most emotional upsets that come up. SA A D SD 39. Tenderness rakes second place to other things in our family. SA A D SD 40. We discuss who is to do household jobs SA A D SD 41. Making decisions is a problem for our family. SA A D SD 42 Our family shows interest in each other only when they can get something out of it SA A D SD Q3. We are frank w,ih each other. SA . A D SD 43 We don't hold to any rules or standards • SA A D SD 45, H people are asked to do Something. the\j need reminding SA- A D SD •46, Ws .are able to make decisions about how to solve problems SA .- A D SD 47 If the rules are broken, We don't know what to expect. SA A D SD t\% An^irvg goes in our fsroly. SA -A D SD FAMILY ASSESSMENT D E V I C E Brou-n^utlcr Family Research Program ID page S 49. W« express tenderness. SA A D SD 50 We confront problems involving feelings. SA A D SD 51. We don't get along well together. SA A D SD 52. i*Ve don't talk- to each other when we are angry. SA A D SD . 53. We are oeneiaily dissatisfied with the family duties assigned to us. SA A D SD 54. Even though we mean well, we intrude too much into each others lives. SA A D SD 55- There are Jules zbou: dangerous situations. SA .A D SD 56. We confide in each other SA , A ___ D SD 57 We cry openly. SA _ A D SD 58. We don't have re3|>onabIe transport. SA A D SD When We don't \ke wh*t soroftarx*. ta£ don£.,w_:tti\rH>e.»H -____0 __.-$!> _SA A D —"S£> Appendix F Table F - l Internal Consistancy and Test - re test coe f f i c i en ts of the FAD FAD Scale Alpha c o e f f i c i e n t Tes t - re tes t Problem Solving .74 .66 Canrjmmication .75 .72 A f fec t ive Responsiveness .83 .76 A f fec t ive Involvement .78 .67 Behavior Control .72 .73 General Functioning .92 .71 Roles .72 .75 Epstein et a l . (1983), p. 176.