UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

The family cancer experience : a qualitative study of families in which an adult member is living with… Thorne, Sally Elizabeth 1983

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Item Metadata

Download

Media
831-UBC_1983_A5_7 T56.pdf [ 7.81MB ]
Metadata
JSON: 831-1.0095647.json
JSON-LD: 831-1.0095647-ld.json
RDF/XML (Pretty): 831-1.0095647-rdf.xml
RDF/JSON: 831-1.0095647-rdf.json
Turtle: 831-1.0095647-turtle.txt
N-Triples: 831-1.0095647-rdf-ntriples.txt
Original Record: 831-1.0095647-source.json
Full Text
831-1.0095647-fulltext.txt
Citation
831-1.0095647.ris

Full Text

THE FAMILY CANCER EXPERIENCE: A QUALITATIVE STUDY OF FAMILIES IN WHICH AN ADULT MEMBER IS LIVING WITH CANCER by SALLY ELIZABETH THORNE B.S.N., University of B r i t i s h Columbia, 1979. A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES The School of Nursing We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA August 1983 © Sally Elizabeth Thorne, 1983 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y available for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. I t i s understood that copying or publication of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of N(A/AJ (~1  The University of B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 requirements for an advanced degree at the University DE-6 (3/81) i i Abstract THE FAMILY CANCER EXPERIENCE: A QUALITATIVE STUDY OF FAMILIES IN WHICH AN ADULT MEMBER IS LIVING WITH CANCER This study was designed to e l i c i t the perceptions of families who are experiencing cancer in one of the i r adult members for the purpose of describing and explaining psychosocial aspects of the cancer experience from a family perspective. The method used in conducting t h i s study was the phenomenological paradigm of qual i t a t i v e research. Data were collected through a series of interviews with eight families comprised of a total of seventeen members. The eight cancer-patient members were a l l between the ages of 59 and 66. The i n i t i a l interviews were loosely guided by the research questions, and addressed the families' perceptions of the impact of cancer upon psychosocial aspects of the i r everyday l i v e s . The data were comprised of the accounts given by families in these interviews. Constant comparative analysis was employed throughout the data co l l e c t i o n phase to permit analytic material to guide and focus the process of constructing accounts. The families described the i r everyday l i v e s with cancer as being normal l i v e s notwithstanding a number of changes d i r e c t l y associated with having cancer. They perceived themselves to have minimized the impact of change through a number of consciously-chosen strategic approaches. They explained the normalcy of the i r experiences in terms of the successfulness of these strategic approaches. Further, they explained the success of their strategies in terms of the relationship of these strategies to their family self-concept and philosophy. The data revealed the capacity of older families to modify and make sense of the i r cancer experiences. By applying attitudes which conformed to the i r histories and philosophies, they minimized changes in everyday l i f e , created support networks, f a c i l i t a t e d the quality of t h e i r medical care, and generated hope. In terms of nursing practice, these findings reinforce the value of incorporating family b e l i e f s and attitudes into a l l phases of the nursing process. They therefore strengthen the argument for evaluating effective and ineffective coping on an individual basis rather than according to commonly-held assumptions. Implications for future nursing research include further exploration of selected themes that emerged from the study, and expansion of the body of knowledge about family functioning to include the family's perspective. i v TABLE OF CONTENTS Abs t rac t i i i Table of Contents i v Acknowl edgements v i Chapter 1: INTRODUCTION Background to the Problem and Purpose 1 Statement of the Problem and Purpose 3 D e f i n i t i o n of Terms 4 I n t roduc t i on to Th is S t u d y ' s Methodology 5 Assumptions and L i m i t a t i o n s 6 Summary 7 Chapter 2 : REVIEW OF THE LITERATURE In t roduc t i on 8 Study ing the Fami ly 9 Study ing the Fami ly Cancer Exper ience 11 Research F i nd i ngs 12 Theo re t i ca l P e r s p e c t i v e s 16 Fami ly Emotional S ta te 16 Fami ly Roles 18 Fami ly Communication 19 Fami ly Ph i losophy 20 ' Summary 21 Chapter 3: METHODOLOGY In t roduc t i on 22 S e l e c t i o n o f P a r t i c i p a n t s 22 C r i t e r i a f o r S e l e c t i o n 22 S e l e c t i o n Procedure 23 C h a r a c t e r i s t i c s o f the P a r t i c i p a n t s 25 Data C o l l e c t i o n 26 Cons t r uc t i on of Accounts 29 E t h i c a l Cons ide ra t i ons 30 Data A n a l y s i s 31 j Summary 32 Chapter 4 : THE FAMILIES' ACCOUNTS In t roduc t i on 33 D e s c r i b i n g the Impact 35 General Pe rcep t i ons 36 Impact on Emotional S ta te 38 Impact on Roles 44 Chapter 4 : (cont inued) Impact on Communication 51 Impact on Ph i losophy 63 E x p l a i n i n g the Impact 70 Adapt ing Everyday L i f e 74 Evo l v ing a Network 87 Managing Medica l Care 98 Generat ing Hope 108 I n t eg ra t i ng the Exper ience i n t o a L i f e Context 119 Summary 130 Chapter 5: DISCUSSION OF THE FINDINGS In t roduc t i on 132 : D e s c r i p t i o n o f the Impact 133 General Pe rcep t i ons 133 Impact on Emotional S ta te 133 Impact on Roles 135 Impact on Communication 136 Impact on Ph i losophy 137 Exp lana t i on of the Impact 138 Adapt ing Everday L i f e 138 E v o l v i n g a Network 141 Managing Medica l Care 144 Generat ing Hope 146 I n t e g r a t i o n of the Exper ience 148 Summary 152 Chapter 6 : SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING Summary and Conc lus ions 153 Imp l i ca t i ons f o r Nurs ing P r a c t i c e 156 ; Imp l i ca t i ons f o r Nurs ing Research 158 B i b l i o g r a p h y 162 Appendices 170 v i Acknowledgements For the i r efforts in guiding me through the research process, I would l i k e to thank the members of my thesis committee, Professors Clarissa P. Green (chair), and Joan Anderson. Inspiration for this undertaking i s credited to Criss Green, whose concern about cancer families and unfailing enthusiasm fueled my fascination for the project. In the context of my own everyday l i f e , there are many colleagues and friends who supported some part of this process. Carole Robinson, Pauline Dunn;, Mary Adlersberg, E l i z a Fry, and Leah Carey each helped maintain my perspective and bolster my confidence. I would also l i k e to express my thanks to Dr. T. Sparling, Linda Burgess and Sharon McKinnon for making this project possible. F i n a l l y , I would l i k e to express my gratitude to the eight participant f a m i l i e s , each of whom have touched me deeply and made a remarkable contribution to my understanding of health and i l l n e s s , l i f e and death. i Chapter 1 I n t roduc t i on Background to the Problem and Purpose Near ly one hundred thousand Canadians w i l l be diagnosed w i th cancer t h i s y e a r . In f i v e yea rs t ime , a t l e a s t f i f t y percent of those people w i l l s t i l l be a l i v e . As cancer t reatment improves l o n g e v i t y and reduces m o r t a l i t y , more and more Canadian f a m i l i e s w i l l be l i v i n g w i th cancer i n one io f t h e i r members (MacDonald, 1979; R o t h w e l l , 1983). In f a c t , two out o f t h r e e f a m i l i e s a t some po in t i n t h e i r h i s t o r y w i l l encounter t h i s exper ience (Brody, 1977) . The pe rcep t ion tha t cancer i s a l i f e - t h r e a t e n i n g i l l n e s s poses one se t of psycho log i ca l f o r ces upon the expe r i ence . "Whether the t h r e a t of death i s rea l or imag ina ry , tremendous emotional s t r a i n i s p laced on the p a t i e n t and on h i s f a m i l y " (Smi th , 1975, p. 39 ) . Cancer may a l s o imply p a i n , d i s f i g u r e m e n t , and the unce r t a i n t y of r ecu r rence . "Few o ther i l l n e s s e s combine so t r a g i c a l l y the wear ing q u a l i t i e s of a long i l l n e s s w i th the t e a r i n g q u a l i t i e s of an acute one" ( B a r c k l e y , 1967, p. 278) . A t t e n t i o n to emotional needs i s a r e l a t i v e l y recent a d d i t i o n to s tandard cancer care (Hartman, 1980) . The psychosoc ia l i m p l i c a t i o n s of hav ing cancer are addressed i n an abundance of recent l i t e r a t u r e about c a n c e r . M i l l e r , Denner, and Richardson (1976) i n t h e i r review of research conc lude t ha t " i t i s l i k e l y t ha t a l l i n d i v i d u a l s who are diagnosed as having cancer have some s o c i o l o g i c a l and psycho log i ca l problems i n cop ing w i th the s i t u a t i o n " (p . 161) . Creech (1975) compares the s o c i a l i m p l i c a -t i o n s o f hav ing cancer today w i th the h i s t o r i c p l i g h t of the l e p e r . He argues tha t these s o c i a l r a m i f i c a t i o n s c o n t r i b u t e to the unique p s y c h o l o g i c a l problems found i n cancer p a t i e n t s and t h e i r f a m i l i e s . 1 Recent t rends i n nurs ing and hea l th care emphasize the b e l i e f t ha t p a t i e n t s cannot be viewed as i s o l a t e d i n d i v i d u a l s , s i nce they i n f l u e n c e and are i n f l u e n c e d by f a m i l i e s (Geary , 1979) . Bahnson de f ines the fam i l y i n ' a manner tha t i l l u s t r a t e s t h i s i n t e r r e l a t i o n s h i p : The fam i l y i s not a conglomerat ion of i n d i v i d u a l s who happen to l i v e t o g e t h e r . I t i s an i n t r i c a t e emotional and communicat ional as we l l as c o g n i t i v e sys tem, i n which changes i n one pa r t of the system immediately d i c t a t e r e o r g a n i z a t i o n i n the remainder . (1975, p. 306) . The psychosoc ia l impact of cancer upon f a m i l i e s i s b e l i e v e d to be as unique and as devas ta t i ng as i t i s upon i n d i v i d u a l s (Ne l son , 1973; Ross , 1979; She ldon , Ryser & K r a n t , 1970; W e l l i s c h , Mosher & Van Scoy , 1978) . The i m p l i c a t i o n s of cancer may a f f e c t f a m i l i e s to a g rea te r degree than they a f f e c t the i n d i v i d u a l p a t i e n t , p a r t i c u l a r l y i f the fam i l y i s w i thou t hea l t h care system suppor ts a v a i l a b l e to the p a t i e n t (American Cancer S o c i e t y , 1975; Speese-Owens, 1981) . As one oncology nurs ing l eade r s t a t e s , "cancer i s a s o c i a l i l l n e s s which takes i t s t o l l on the e n t i r e f am i l y u n i t " (Van Scoy-Mosher , 1978, p. 22 ) . The f am i l y as a c r i t i c a l t a r g e t f o r n u r s i n g , a no t ion subs tan t i a t ed by severa l nurs ing t h e o r i s t s (Green, 1980; Johnson & Norby, 1981; Welch, 1981) , c o n t r a s t s sha rp l y w i th the t r a d i t i o n a l nu rs ing pe rspec t i ve of f am i l y as emotional support ^system f o r the i n d i v i d u a l w i th cancer ( G i a c q u i n t a , 1977; U .S . Department o f Heal th and Human S e r v i c e s , 1980) . Th is s h i f t i n pe rspec t i ve c a r r i e s w i th i t a r e q u i s i t e s h i f t i n i m p l i c a -t i o n s f o r nurs ing p r a c t i c e i n r e l a t i o n to such f a m i l i e s . Bahnson (1975) emphasizes the no t ion t ha t hea l th care p r o f e s s i o n a l s must attempt to d i s c o v e r the pe rce ived or e x i s t e n t i a l meaning of the d i sease and i t s i m p l i c a t i o n s f o r i n d i v i d u a l s and f a m i l i e s . From the po i n t o f view of psycho log i c management, i t i s c r u c i a l to l e a r n e x a c t l y what the d i sease means to a p a r t i c u l a r pe rson ; which dreams, images, s e l f concep ts , g o a l s , hopes, i t thwarts or m o d i f i e s ; and what are the main i m p l i c a t i o n s f o r t h i s p a r t i c u l a r p a t i e n t and h i s f am i l y system of the changes i n him and i n the system tha t r e s u l t from the d i sease p rocess , (p . 293) . The va lues unde r l y i ng t h i s demand are c o n s i s t e n t w i th the emerging emphasis on the n u r s e ' s r o l e to p rov ide h o l i s t i c care to p a t i e n t s and f a m i l i e s (Welch, F o l i o & N e l s o n , 1982) . H o l i s t i c cancer nu rs ing care r e l i e s upon an unders tanding or a p p r e c i a t i o n f o r the exper ience the f am i l y i s undergoing (Wegmann & O g r i n c , 1981) . I t r equ i r es tha t nu rs ing address the i s s u e of "what f a m i l i e s grapple w i th as they exper ience having a member w i th cancer " (Green, 1980, p. 21 ) . Whi le a l i t e r a t u r e review r e v e a l s numerous t h e o r e t i c a l assumptions about what the f am i l y cancer exper ience e n t a i l s , research has not y e t e s t a b l i s h e d the degree to which theory does or does not e x p l a i n the nature o f the phenomenon as exper ienced by f a m i l i e s . The most obvious data s o u r c e , the f a m i l i e s themse lves , i s l a r g e l y untapped. Statement of the Problem and Purpose The general problem to which t h i s study i s addressed i s the lack of knowledge about the fam i l y cancer exper ience as perce ived and a r t i c u l a t e d by the f a m i l i e s themse lves . Cur ren t cancer care t rends demand tha t f a m i l i e s as we l l as p a t i e n t s be c o n s i d e r e d . N u r s i n g ' s h o l i s t i c focus i s c o n s i s t e n t w i th t h i s p h i l o s o p h i c a l s tance . In order to p r e d i c t and prevent f am i l y prob lems, and to p lan care tha t i nc l udes and dea ls w i th f am i l y i s s u e s , nurses must develop some understanding of the nature of the f am i l y e x p e r i e n c e . Although considerable theory and opinion are available in the published lay and professional l i t e r a t u r e , there i s l i t t l e evidence as to the extent to which such theories provide accurate and r e a l i s t i c explanations for what families do experience i n relation to cancer in the i r midst. The purpose of th i s study i s , therefore, to describe and explain psychosocial aspects of the family cancer experience as perceived and articulated by families wherein an adult member i s l i v i n g with cancer. Selected areas within t h i s multifaceted and complex experience w i l l be used as foci for exploring the phenomenon. Therefore, the sp e c i f i c questions that direct t h i s study are as follows: 1. What i s i t l i k e for a family to have an adult member with cancer? 2. What aspects of the cancer experience have an effect upon a family's everyday l i f e ? 3. How are family role r e s p o n s i b i l i t i e s affected by the experience of cancer? 4. What i s the relationship, i f any, between family values, attitudes, or philosophies and the family's cancer experience? 5. What i s i t l i k e for families to talk about thei r experience of l i v i n g with cancer? Definition of terms Cancer: the p r o l i f e r a t i o n of malignant c e l l s that have the capacity for invasion of normal tissues. Individual with Cancer (Cancer Patient): for the purpose of this study, an individual over the age of eighteen who has been diagnosed with a cancer at least two months prior to participating in the study, and who i s not, in the opinion of his or her physician, in the terminal stages of that i l l n e s s . Fami l y : f o r the purpose of t h i s s tudy , the group of persons i d e n t i f i e d by the i n d i v i d u a l w i th cancer as be ing s i g n i f i c a n t to him or h e r , r ega rd l ess o f f a c t o r s such as k i n s h i p t i e s or common househo ld . Cancer Expe r i ence : r e a c t i o n s to the presence of c a n c e r , and i t s r a m i f i c a -t i o n s , w i t h i n the con tex t o f everday l i f e . Context of Everyday L i f e : the f a m i l y ' s d a i l y l i v i n g , i n c l u d i n g e v e n t s , r o u t i n e s , r o l e s , and r e l a t i o n s h i p s . I n t roduc t i on to t h i s s t u d y ' s methodology ' The methodology f o r t h i s study i s q u a l i t a t i v e and r e l i e s on phenomenological theory as i t s framework. Q u a l i t a t i v e and q u a n t i t a t i v e approaches o r i g i n a t e from d i s p a r a t e views of s o c i a l r e a l i t y and seek to generate e s s e n t i a l l y d i f f e r e n t types of knowledge. Thus p rocedures , n o t a t i o n sys tems, and even va lues are co r respond ing l y d i f f e r e n t f o r each research approach (Schwartz & J a c o b s , 1979) . Q u a n t i t a t i v e methodologies assume t ha t " the study of observab le deeds and expressed words i s adequate to produce knowledge about man and h i s na tu ra l wor ld " ( R i s t , 1979, p. 19 ) . The phenomenological paradigm of q u a l i t a t i v e research serves as a too l f o r r a t i o n a l i z i n g c e r t a i n spec ies o f knowledge tha t are not w i t h i n the n a t u r a l i s t i c t r a d i t i o n s o f sc ience ( D a v i s , 1978) . Th is approach assumes t t h a t " the re i s va lue to an a n a l y s i s o f both the i nne r exper ience and ou ter behav io r o f a sub jec t as viewed by both the researcher and the p a r t i c i -pants ( R i s t , 1979, p. 1 9 ) . The r o l e requ i red of the researcher i n the phenomenological paradigm o f q u a l i t a t i v e methodology i s t ha t of e n t e r i n g i n t o the process be ing s t u d i e d f o r the purpose of i n t e r p r e t i n g i t as i t appears to the people engaged ( D a v i s , 1978) . "Grounded e v e n t s , " those exper iences shared and understood by p a r t i c i p a n t s and r e s e a r c h e r , p rov ide the data from which concepts and hypotheses emerge throughout the research process ( R i s t , 1979) . From t h i s d a t a , and i n r e l a t i o n to t h i s d a t a , "grounded subs tan t i ve theory" may be generated (Lindemann, 1974, p. 106) . In q u a l i t a t i v e r e s e a r c h , the p r i n c i p l e s of r e p r e s e n t a t i v e sampl ing do not app l y . T h e o r e t i c a l sampl ing i s the process by which " i n fo rman ts " are s e l e c t e d by v i r t u e of t h e i r competency to answer the research ques t ions ( S p r a d l e y , 1979) . The usual no t ions of r e l i a b i l i t y and v a l i d i t y are a l s o i n a p p l i c a b l e to q u a l i t a t i v e methodology. Ra the r , the c r i t e r i a by which the research may be judged are the r i c h n e s s of the data and the c r e d i b i l i t y of the concepts and t h e o r i e s developed from them ( D i e r s , 1979) . Assumptions and L i m i t a t i o n s The researcher approached t h i s study w i th the assumption tha t there are psychosoc ia l i m p l i c a t i o n s a s s o c i a t e d w i th having an adu l t member w i th cancer i n a f a m i l y . She f u r t h e r assumed tha t these i m p l i c a t i o n s have an impact upon the everyday l i f e of the f a m i l y , and tha t the f am i l y u n i t can express them i n a d i f f e r e n t vo i ce than cou ld i n d i v i d u a l f am i l y members. In a d d i t i o n , she assumed tha t the in fo rmat ion shared by a f am i l y group i s an accura te r e p o r t i n g o f i t s pe rcep t ion of r e a l i t y . Her f i n a l assumption was t ha t an unders tanding of what t h i s exper ience i s l i k e f o r f a m i l i e s cou ld be a s c e r t a i n e d through phenomenological research methods. The depth and r i c h n e s s of the data f o r t h i s study are l i m i t e d by the t ime c o n s t r a i n t s o f the r e s e a r c h e r . Such c o n s t r a i n t s account f o r the l i m i t e d number of in formant f a m i l i e s i n te rv iewed and the l i m i t e d number of i n t e r v i e w sess ions w i th each . F u r t h e r , s i nce in formant f a m i l i e s were con tac ted through a s i n g l e Oncology C l i n i c , they may i n f a c t represent a s p e c i a l i z e d sub-group of the t h e o r e t i c a l popu la t ion of f a m i l i e s l i v i n g w i th cance r . Summary In t h i s c h a p t e r , the problem and purpose of the study have been i n t r o d u c e d , and the methodology has been b r i e f l y d e s c r i b e d . The l i t e r a t u r e from which a conceptual background f o r t h i s study was drawn i s reviewed i n Chapter 2 . Chapter 3 desc r i bes the process by which the methodology was implemented i n t h i s s tudy . The accounts g iven by f a m i l i e s i n the study are desc r i bed and exp la i ned i n Chapter 4 . Chapter 5 c o n s t i t u t e s a d i s c u s s i o n of the accounts i n terms of the l i t e r a t u r e presented i n Chapter 2 and o ther r e l e v a n t l i t e r a t u r e . Chapter 6 summarizes the study and s t a t e s the i m p l i c a t i o n s of the f i n d i n g s . Chapter 2 Review of the Literature Introduction This chapter w i l l present a review of bodies of l i t e r a t u r e which are intimately linked to the stated purpose of this study, to describe and explain the family cancer experience from a family perspective. In order to add a family perspective to what i s already known and understood about the cancer experience, i t i s essential to establish what that common knowledge and understanding e n t a i l s . The l i t e r a t u r e review w i l l therefore address not only the knowledge available, but also the methods by which i t has been acquired. The l i t e r a t u r e to be reviewed i s that which pertains s p e c i f i c a l l y to the experience of the family of the adult with cancer, subsequent to diagnosis and prior to the advanced or terminal phase of that i l l n e s s . A discussion of the current status of family study in relation to the cancer experience w i l l be presented. Research that has addressed some aspect of the family cancer experience w i l l be reviewed. Discussion of the li m i t a t i o n s of that research base w i l l lead into a description of some of the theoretical approaches to the family cancer experience that appear in the l i t e r a t u r e . Since much of what i s commonly accepted as relevant to the family cancer experience i s not research based, this discussion w i l l locate the present study within the context of general theoretical perspectives. Discussion of this theory base w i l l be limited to the psychosocial aspects of the experience (as opposed to medical, f i n a n c i a l , r e l i g i o u s , etc.) and w i l l u t i l i z e as i t s organizing framework four broad themes, which themselves have emerged from the ideas in the l i t e r a t u r e . These are (a) Family emotional state, (b) Family roles, (c) Family communicat ion, and (d) Fami ly ph i l osophy . Thus the l i t e r a t u r e rev iew w i l l l o c a t e the purpose and method of t h i s study w i t h i n the general e v o l u t i o n of f am i l y t heo ry . I t w i l l a l s o desc r i be the common understanding of what the fam i l y cancer exper ience e n t a i l s as r e f l e c t e d i n the research and t h e o r e t i c a l l i t e r a t u r e . Th is l i t e r a t u r e rev iew , t h e n , p rov ides a b a s i s upon which to guide the research process toward answering the research q u e s t i o n s . In Chapter 5 , the f i n d i n g s of t h i s study w i l l be examined and d i scussed i n r e l a t i o n to t h i s same body of l i t e r a t u r e . In a d d i t i o n , f u r t h e r r e l a t e d l i t e r a t u r e w i l l be drawn i n t o tha t chapter as necessary to exp lo re and d i scuss the d e s c r i p t i o n s and exp lana t i ons generated by the f a m i l i e s , and presented i n Chapter 4 . Study ing the Fami ly Nurses , o ther hea l th care p r o f e s s i o n a l s , and l a y persons have, i n recen t y e a r s , pub l i shed an abundance of l i t e r a t u r e demanding a h o l i s t i c , f a m i l y - o r i e n t e d approach to cancer c a r e . In s p i t e of t h i s demand, the body of a v a i l a b l e knowledge about the exper iences of f a m i l i e s w i th cancer i s underdeveloped. L i t t l e i s known about the ways i n which f a m i l i e s deal w i th c a n c e r , or the f a c t o r s tha t d i f f e r e n t i a t e between f a m i l i e s who cope e f f e c t i v e l y and those who do not (L i tman , 1974). M i l l e r e t a l . (1976) b e l i e v e t ha t t h i s pover ty of knowledge about f a m i l i e s w i th cancer a l l ows them to be depr ived of sys temat ic c a r e . Hartman (1980) f u r t h e r c la ims t ha t our l ack of understanding serves to r e i n f o r c e the f e e l i n g s of these f a m i l i e s t ha t they are i s o l a t e d from the r e s t of the w o r l d . Whi le op in ions about what these f a m i l i e s contend w i th abound i n the l i t e r a t u r e , few of the t h e o r i e s are grounded i n r e s e a r c h . I t i s impor tant to note tha t the study of f a m i l i e s i n r e l a t i o n to any i l l n e s s i s a r e l a t i v e l y recent occu r rence . Al though events i n the fam i l y have long been of i n t e r e s t to hea l th care and o ther r e s e a r c h e r s , at tempts to c o n c e p t u a l i z e these events us ing the fam i l y as a f oca l u n i t f o r study have r a r e l y been undertaken (Hande l , 1974). "Our knowledge of the f am i l y i s l i k e a g ian t p i c t u r e puzz le i n which some p ieces are m i s s i n g , o ther p ieces do not f i t together w e l l , and on ly a few s e c t i o n s prov ide c l e a r images" (G lasse r & G l a s s e r , 1970). R.D. La ing (1969) blames the absence of e s s e n t i a l f am i l y research on the complex i ty of the s u b j e c t : "we have taught ou rse l ves tha t i t i s use less to ask q u e s t i o n s , when we have no methodology to answer them." Desp i te such h u r d l e s , some f a m i l y - o r i e n t e d hea l th care research has o c c u r r e d . Often such study of f a m i l i e s i s f a c i l i t a t e d by adherence to one conceptual d e f i n i t i o n of f a m i l y . The fam i l y as an e n t i t y having ' n e e d s ' , f o r example, serves as a gu id ing pe rspec t i ve f o r Mo l te r (1979) and Breau and Dracup (1978) i n t h e i r quests f o r i n fo rma t ion about r e l a t i v e s of c r i t i c a l l y i l l p a t i e n t s . D e f i n i t i o n o f f am i l y f unc t i on as ' c o p i n g ' or ' a d a p t a t i o n ' p rov ides a conceptual framework tha t j u s t i f i e s the search by o ther authors f o r behav iors or stages w i t h i n those processes ( e . g . , Brod land & Andreasen, 1977; Geary , 1979). A l though c o n c e p t u a l i z i n g the fam i l y i n such a fash ion p rov ides research d i r e c t i o n , i t i s not a l t o g e t h e r c o n s i s t e n t w i th the t rend away from v iewing the f am i l y as an e n t i t y concerned about the i l l member, and toward a pe rcep t i on of f am i l y as the b a s i c u n i t i n which i l l n e s s i s exper ienced (L i tman , 1974) . C o n c e p t u a l i z i n g the fam i l y as a whole p rec ludes o v e r - r e l i a n c e upon research d i r e c t i o n taken from views of f am i l y t ha t represent s e l e c t e d pa r t s of t ha t whole. More h o l i s t i c models , such as systems t heo ry , promote a b a s i s f o r understanding how cancer i n a f ami l y member d r a m a t i c a l l y a l t e r s the c o g n i t i v e , s o c i a l , and emotional pa t te rns of tha t f am i l y system ( W e l l i s c h e t a l . , 1978). Whi le t h i s l a t t e r view of f am i l y supports the urgency of s tudy ing the f am i l y u n i t as a who le , i t does not i n i t s e l f p rov ide an immediately obvious d i r e c t i o n as to how t h i s may be accompl ished. For t h i s r eason , t h i s study w i l l not be guided by any one t h e o r e t i c a l approach to c o n c e p t u a l i z i n g the fam i l y but conceptual c a t e g o r i e s w i l l be cons t ruc ted from the fami l y data i t s e l f . Study ing the Fami ly Cancer Exper ience S ince the fami l y u n i t as a t a rge t f o r study presents methodolog ica l and conceptual d i f f i c u l t i e s f o r r e s e a r c h e r s , much of the re l evan t research knowledge a v a i l a b l e to us i s based upon the study of i n d i v i d u a l s as cancer p a t i e n t s or as fami l y members. The two areas i n which the f a m i l y ' s c a n c e r - r e l a t e d exper ience has been examined i n some depth are the s p e c i f i c s i t u a t i o n s of the fam i l y w i th a member dying of cancer (Bahnson, 1975; L e i n i n g e r , 1977) and the fam i l y w i th a c h i l d w i th cancer (Brody, 1977; Welch, 1981). A common approach to the examinat ion of these s e l e c t e d exper iences i s the i d e n t i f i c a t i o n of p a r a l l e l s tages through which i n d i v i d u a l s and f a m i l i e s are presumed to p r o g r e s s . T h e o r i s t s have i d e n t i f i e d s p e c i f i c " p s y c h o l o g i c a l t a s k s " tha t f a m i l i e s must accompl ish i n order to adapt to or r eso l ve the c r i s i s (Go ldberg , 1977; K a p l a n , Smi th , Grobs te in & F ischman, 1977; K u b l e r - R o s s , 1974). The f a m i l i e s of both c h i l d r e n w i th cancer and adu l t s dy ing of cancer have been i d e n t i f i e d by these t h e o r i s t s as h i g h - r i s k groups f o r p s y c h i a t r i c and phys i ca l i l l n e s s , and f o r i n t e rpe rsona l r e l a t i o n s h i p d is tu rbance (Bahnson, 1975; Brody, 1977; Kaplan e t a l . , 1977). S ince i t has not been e s t a b l i s h e d tha t there i s any d i r e c t r e l a t i o n s h i p between the exper ience of f a m i l i e s i n these s i t u a t i o n s and tha t of f a m i l i e s l i v i n g w i th cancer i n an adu l t member, f u r t h e r review of these bodies of l i t e r a t u r e w i l l not be i nc l uded i n t h i s chap te r . Where fami l y members of adu l t cancer p a t i e n t s are addressed i n the l i t e r a t u r e , they are commonly concep tua l i zed as expe r ienc ing a ' l i f e c r i s i s ' . The c r i s i s concept as a p p l i e d to i l l n e s s prov ides d i r e c t i o n f o r i n q u i r y i n t o such components as s t a g e s , cop ing tasks and s t r a t e g i e s , and premorbid pa t te rns (Moos & T s u , 1977). Much of the research to date i s , t h e r e f o r e , d e s c r i p t i v e i n nature and addresses i t s e l f toward i d e n t i f i c a t i o n and naming of such t h e o r e t i c a l sub -cons t ruc ts as s t a g e s , needs, or s t r a t e g i e s . S ince i t has not been e s t a b l i s h e d tha t c r i s i s i s an app rop r ia te model f o r c o n c e p t u a l i z i n g the cancer e x p e r i e n c e , such research approaches seem somewhat premature. Research F ind ings The f o l l o w i n g i s a summary of s t ud ies found i n the l i t e r a t u r e tha t r e l a t e s p e c i f i c a l l y to the exper ience of f a m i l i e s w i th a member wi th cance r . Those s tud ies d i r e c t e d s p e c i f i c a l l y toward cancer i n the c h i l d or toward termina l care have been exc luded f o r the reasons c i t e d p r e v i o u s l y . In an ethnographic study of a 23-bed cancer ward, Germain (1979) i nc l uded some d i s c u s s i o n about the impact of the exper ience upon f a m i l i e s i n t ha t s e t t i n g . She concluded tha t a major coping d i f f i c u l t y f o r both p a t i e n t s and f a m i l i e s was a s s o c i a t e d w i th emotional problems r e l a t e d to l o s s of independence. Wegmann and Ogr inc (1981) used a s i n g l e - c a s e d e s c r i p t i v e study to i l l u s t r a t e the va lue of i d e n t i f y i n g fam i l y g r i e f / c r i s i s response stages i n order to p lan nurs ing care tha t compl ies w i th fam i l y defence mechanisms. Green (1980) u t i l i z e d th ree case s tud ies to demonstrate common elements i n f am i l y d i s r u p t i o n and r e l a t i o n s h i p to the hea l th care system dur ina the c r i s i s of cance r . She vo i ced the need f o r a s p e c i f i c nurs ing r o l e i n r e l a t i o n to fam i l y c r i s i s , communicat ion, and c o - o r d i n a t i o n . In her p r e l i m i n a r y repor t of a l a r g e r study to exp lo re fam i l y r e a c t i o n s to cancer d i a g n o s i s and t rea tment , Green (1982) commented tha t " the powerful need of f a m i l i e s to r e l ay a great deal of u n s o l i c i t e d in fo rmat ion was not a n t i c i p a t e d " (p . 56 ) . She suggested t ha t f u r t h e r study of cancer f a m i l i e s , guided by a phenomenological p e r s p e c t i v e , was i n d i c a t e d . M i l l e r and Nygren (1978) presented a d e s c r i p t i v e study of ten f a m i l y -member/subjects aimed a t e v a l u a t i n g an educa t iona l program geared to f a c i l a t e f am i l y adjustment to l i v i n g w i th cance r . The i r work focussed upon coping behav iors repor ted by members before and a f t e r educat iona l programs. They grouped cop ing behav iors i n t o f i v e c a t e g o r i e s : 1. share conce rns ; 2. d i s p l a c e m e n t / d i v e r s i o n ; 3 . c o n f r o n t a t i o n / n e g o t i a t i o n ; 4 . p r o j e c t i o n / e x t e r n a l i z a t i o n ; and 5. r a t i o n a l i z a t i o n / r e i n t e r p r e t a t i o n . C a s s i l e t h , He ibe rge r , March, and Sut ton-Smi th (1982) measured anx ie t y scores o f p a t i e n t s and r e l a t i v e s before and a f t e r v iewing an i n fo rma t iona l program about cance r . The i r unexpected f i n d i n g was tha t p a t i e n t s ' anx ie t y scores were s i g n i f i c a n t l y lower than were those of t h e i r f am i l y members. They concluded tha t t h i s study conf i rmed the b e l i e f t ha t cancer pro found ly a f f e c t s fam i l y members. In a survey of 20 u r o l o g i c cancer p a t i e n t s and t h e i r w i v e s , C u r t i s s (1981) repor ted a g rea te r number o f a n x i e t y - r e l a t e d behav iors i n wives than i n p a t i e n t s themselves . S e x - r o l e d i f f e r e n c e s , however, cou ld have confounded tha t f i n d i n g . A d d i t i o n a l f i n d i n g s repor ted by C u r t i s s i nc l uded heightened awareness of l i v i n g each day by both p a r t n e r s , l i t t l e open communication between spouses , and few l a s t i n g r o l e s h i f t s w i t h i n the f a m i l i e s . L e i b e r , Plumb, Gers tenzang, and Ho l land (1976) surveyed 38 cancer p a t i e n t s undergoing chemotherapy and t h e i r spouses f o r the purpose of i n v e s t i g a t i n g the impact of cancer upon the a f f e c t i o n a l behav iors of the pa r tne rs s i nce the onset of i l l n e s s . They repor ted i nc reased d e s i r e f o r p h y s i c a l c loseness and decreased d e s i r e f o r sexual i n t e r c o u r s e i n both p a t i e n t s and spouses. Vachon, Freedman, Formo, Rogers , L y a l l and Freeman (1977) repor ted f i n d i n g s based on a study of women widowed due to cancer compared w i th widows from other i l l n e s s e s or c i r cums tances . They found tha t sub jec ts whose husbands had d ied of cancer repor ted d i f f e r e n t bereavement exper iences than d id o t h e r s . An u n s o l i c i t e d theme tha t emerged from t h e i r i n t e r v i e w data was the spontaneous r e p o r t i n g by severa l sub jec ts tha t the s t r e s s o f l i v i n g w i th cancer was f a r worse than the s t r e s s of bereavement and widowhood. MacVicar (1975) searched f o r f a c t o r s assoc i a t ed w i th fami l y adjustment f o l l o w i n g the onset of a mal ignant n e o p l a s t i c d i s e a s e . She measured the impact o f cancer i n terms of such f a c t o r s as s o c i a l p a r t i c i p a t i o n , fami l y f i n a n c i a l s t a t u s , and hea l th s ta tus of fami l y members. Her conc lus ion was tha t both the nature of the pathology and the resources u t i l i z e d by f a m i l i e s were of importance i n shaping tha t impact . In a second study (1981) , MacVicar desc r ibed common fea tu res found i n a sample of 100 f a m i l i e s of mar r ied male cancer p a t i e n t s w i th dependent c h i l d r e n i n the home. She found tha t r o l e c o n f l i c t s were a fea tu re of the e x p e r i e n c e , e s p e c i a l l y i n t r a d i t i o n a l l y s t r u c t u r e d f a m i l i e s . She a l s o repor ted what she desc r ibed as a " h o p e l e s s n e s s - h e l p l e s s n e s s syndrome," which c h a r a c t e r i z e d a ma jo r i t y of the f a m i l i e s i n her s tudy . She concluded tha t the p r e - i l l n e s s s ta tus of the f a m i l y , a long w i th s e l e c t e d demographic f a c t o r s , was a t l e a s t as i n f l u e n t i a l as the pathology i n determining family coping. Welch (1981) surveyed 41 members of adult cancer patients' families in order to assess coping strategies and family needs. Repeatedly reported coping mechanisms included empathizing with the patient, desiring explanations from doctors, and identifying the value of communicating by touching. The need most commonly reported was for nurses to give excellent, personalized care to the patient. The results of this study r e f l e c t the focus of research interest in identifying family concerns as part of the total nursing plan for a hospitalized cancer patient. The conclusion that family coping depends upon excellent patient care i s one that this writer questions, since the methodology did not take into consideration the p o s s i b i l i t y that family members might feel s o c i a l l y obligated to l i s t concern for the patient above a l l e l s e , p a r t i c u l a r l y when being questioned by a nurse within a health care setting context. These studies i l l u s t r a t e the limitations in the current research-based knowledge. Most studies examine family members as individuals, rather than families as groups of people. They rely heavily on the assumption that c r i s i s theory i s a relevant organizing framework for conceptualizing the research findings. Research questions are. focussed upon concern about the i l l member and the hospital/nursing care experience. Everyday l i v i n g i s largely ignored as a family issue. This writer, therefore, feels that research-based knowledge to date provides a markedly inadequate p o r t r a i t of the experience of families l i v i n g with cancer. I t f a i l s to provide a substantial base upon which hypotheses could be formulated. The research does, however, support the contention that cancer i s experienced within a family context and validate the argument that families of cancer patients deserve attention in health care research. T h e o r e t i c a l Pe rspec t i ves There e x i s t s a vas t body of t h e o r e t i c a l l i t e r a t u r e tha t r e l a t e s d i r e c t l y to the fam i l y cancer expe r i ence . S o c i a l s c i e n t i s t s , hea l th care p r o f e s s i o n a l s , and l ay i n d i v i d u a l s w i th personal exper ience have generated an abundance of books and a r t i c l e s tha t address or a l l u d e to the i s sues i n q u e s t i o n . Much of t h i s l i t e r a t u r e r e f l e c t s i n d i v i d u a l op in ion or assumes a common understanding of the nature of the cancer exper ience f o r f a m i l i e s . L i t t l e of the mate r ia l i s grounded i n r e s e a r c h . Where t h e o r i s t s do r e f e r to research f i n d i n g s , such re fe rences tend to be l i m i t e d to a p p l i c a t i o n s and g e n e r a l i z a t i o n s of the research of o ther phenomena ra the r than s p e c i f i c s t ud ies of the f am i l y cancer expe r i ence . Al though a c o n s i s t e n t p o r t r a i t of the exper ience cou ld not be i n f e r r e d from the body of l i t e r a t u r e , i t was p o s s i b l e to e x t r a c t general themes tha t appeared re l evan t to the f am i l y cancer expe r i ence . A sampl ing of the l i t e r a t u r e from which the themes were drawn w i l l be presented i n the f o l l o w i n g pages. S ince these themes form the conceptual base from which t h i s study took i t s d i r e c t i o n , the f o l l o w i n g d i s c u s s i o n demonstrates the r a t i o n a l e f o r the f o c i s e l e c t e d f o r the s tudy . Fami ly emotional s t a t e A number of authors desc r i be what they b e l i e v e f a m i l i e s cope wi th when an adu l t member has cancer and o f f e r t h e o r e t i c a l exp lana t i ons f o r t h e i r o b s e r v a t i o n s . Cantor (1978) desc r i bes the s o c i a l " image" o f cancer as a f a c t o r r espons ib l e f o r much of the anx ie ty exper ience by fam i l y members. Van Scoy-Mosher (1978) b e l i e v e s tha t assessment of t h i s "cancer s e t , " o r se t of preconce ived n o t i o n s , i s an e s s e n t i a l element i n the p lann ing of cancer nurs ing c a r e . The emotional s t a t e of f a m i l i e s w i th a member wi th cancer i s c h a r a c t e r i z e d as "perpe tua l psycho log i ca l l imbo" by W e l l i s c h e t a l . (1978, p. 228) . Hartman (1980) desc r i bes the f e e l i n g as "cons tan t u n c e r t a i n t y , an awesome m ing l i ng of hope and d e s p a i r , courage and f e a r , humor and anger" (p . v i i i ) . Van Scoy-Mosher adds the sense of l o s s of con t ro l to the p i c t u r e . Al though such responses by the fam i l y can be exp la ined i n par t by t h e i r concern f o r the we l l being of the p a t i e n t , the day- to-day contex t of l i v i n g does not cease because one member has cance r . "Morever , s e r i o u s i l l n e s s does not s i m p l i f y l i f e by e c l i p s i n g o ther problems; i t adds one more l a rge one to those tha t are a l ready the re " (McKhann, 1981, p. 41 ) . Whi le cancer i n the f am i l y produces emotional d i s r u p t i o n i n i n d i v i d u a l members, i t a l s o r e s u l t s i n f am i l y system d i s e q u i l i b r i u m . Johnson and Norby (1981) desc r ibe th ree ways i n which t h i s can happen: Cancer (1) can th rea ten or d i s r u p t ex tan t pa t te rns o f i n t e r a c t i o n w i t h i n the fam i l y u n i t i t s e l f ; (2) can upset the f a m i l y ' s o b j e c t i v e f u tu re p lans and o r i e n t a t i o n ; and (3) may a l t e r the c o n s t e l l a t i o n of ex te rna l re fe rence groups w i th which the fam i l y i n t e r a c t s , (p . 23 ) . Van Scoy-Mosher argues tha t no matter what the phase of i l l n e s s or mode of t reatment along the continuum from d iagnos i s to te rmina l i l l n e s s , the f am i l y cons tan t l y s t r i v e s to b r i ng back "some degree of e q u i l i b r i u m i n t o t h e i r e x i s t e n c e " (1978, p. 2 2 ) . Al though t h e o r i s t s f r equen t l y suggest tha t f a m i l i e s d i f f e r i n t h e i r capac i t y to deal w i th t h i s burden of l i v i n g w i th c a n c e r , they o f f e r l i t t l e i n the way of concre te p r e d i c t o r s of f a m i l i e s a t h igher r i s k . The most c o n s i s t e n t l y proposed p r e d i c t o r i s the h i s t o r y of past c r i s i s coping by the f a m i l y . Speese-Owens (1981) notes tha t r e l evan t h i s t o r y i n the assessment i nc ludes past c r i s e s , cu r ren t c r i s i s p l a n s , and the r e a l i z a t i o n o f the need f o r ou ts ide h e l p . W e l l i s c h e t a l . suggest tha t " i n a b i l i t y to ad jus t emot iona l l y to cancer i s not a u n i t a r y phenomenon but the l a t e s t example of long- term d i f f i c u l t i e s in the f am i l y system, e s p e c i a l l y i n a d j u s t i n g to l i f e changes" (1978, p. 228) . Thus whether the cancer exper ience d i r e c t l y causes the d i s r u p t i o n , or i s a s i t u a t i o n i n which l a t e n t d i s r u p t i o n s become o v e r t , the authors seem to agree tha t d i s r u p t i o n in f am i l y emotional s t a t e i s a s i g n i f i c a n t aspect of the expe r i ence . They v a r i o u s l y a t t r i b u t e t h i s to f a c t o r s inheren t i n the f a m i l y , the s o c i e t y , or the d isease i t s e l f . They desc r ibe the c o n s t e l l a t i o n o f observab le phenomena in terms of c r i s i s , system d i s e q u i l i b r i u m , or psycho log i ca l r e a c t i o n to the presence of cancer . Al though each v iewpoin t holds a degree of common-sense m e r i t , i t s u t i l i t y i n e x p l a i n i n g the meaning tha t f a m i l i e s p lace upon t h e i r own exper ience has not y e t been e s t a b l i s h e d . Fami ly r o l es Fami ly r o l e s , a long wi th fam i l y communication and fam i l y p h i l o s o p h y , emerge from the l i t e r a t u r e base as an arena i n which f a m i l i e s seek to c o r r e c t or minimize the d i s rup ted s ta te in which they f i n d themselves when one among them i s l i v i n g w i th cancer . Role s h i f t s can become "pr imary obs tac les to the success fu l management o f s t r e s s " ( C a n t o r , 1978, p .145) . S ince r o l e s prov ide a means by which many f a m i l i e s ma in ta in s t a b i l i t y and comfort dur ing c r i s i s , attempts to reo rgan ize them can compound the d i s r u p t i o n of the cancer exper ience and evoke cons ide rab le a n x i e t y . Role changes, i n t u r n , r a d i c a l l y a l t e r the f a m i l y ' s c a p a c i t y to r e t a i n a semblance of normalcy in everyday l i f e . The weight of new r e s p o n s i b i l i t i e s "can become insurmountab le , des t roy ing normal f am i l y a s s o c i a t i o n s , devour ing t ime needed f o r r e s t and r e c r e a t i o n , and d e p r i v i n g fami ly members of wholesome o p p o r t u n i t i e s f o r exp ress ing anx ie t y and resentment" (Hartman, 1980, p. 16) . Thus the exper ience may not on ly add new s t r e s s o r s to f a m i l i e s but may a l s o render them incapab le of c a r r y i n g on w i th t h e i r normal l i v i n g behav iors (McKhann, 1981). These t h e o r e t i c a l pe r spec t i ves suggest tha t the manner i n which f a m i l i e s a l l o c a t e and perform r o l e f unc t i ons may have a s i g n i f i c a n t impact upon the way i n which cancer a f f e c t s t h e i r everyday l i f e . Fami ly communication Communication w i t h i n the fam i l y u n i t may be d i s rup ted d r a m a t i c a l l y by the emotional tu rmoi l of the i n d i v i d u a l members. When the exper ience of l i v i n g wi th cancer i s viewed i n terms of adapt ive task p r o g r e s s i o n , and each i n d i v i d u a l progresses at h i s or her unique pace, f a m i l i e s may face the a d d i t i o n a l d i f f i c u l t y of a d j u s t i n g to i n d i v i d u a l r eac t i ons tha t are out o f phase w i th the r e s t (McKhann, 1981) . I nd i v i dua l needs f o r emotional support may f l u c t u a t e r a d i c a l l y , and members ( i n c l u d i n g the p a t i e n t ) may be fo rced to take on the r o l e of emotional a r b i t r a t o r f o r each o ther (Speese-Owens, 1981). Hartman (1980) t h e o r i z e s tha t f a m i l i e s who share f e e l i n g s w i th each o ther exper ience l e s s d i f f i c u l t y dea l i ng w i th the cancer exper ience than do those i n which members c h a r a c t e r i s t i c a l l y so l ve problems a lone . Thus communication w i t h i n the fam i l y i s pe rce ived as a s i g n i f i c a n t f a c t o r i n f l u e n c i n g the f a m i l y ' s emotional s t a t u s . A review of the l ay l i t e r a t u r e , however, suggests tha t the f unc t i ons of communication about the cancer exper ience may extend beyond immediate emotional suppor t . One i s s t ruck by the d i s p r o p o r t i o n a t e number of i n d i v i d u a l s who have e l e c t e d to r e l a t e the t a l e of t h e i r f a m i l y ' s cancer exper ience by w r i t i n g a book about i t ( e . g . , Bayh & K o t z , 1979; B rowns te in , 1980; Cook, 1981; Fox , 1979; Humphrey, 1978; I p s w i t c h , 1979; Kaehe le , 1952; Lee , 1977; Loewenste in , 1970; Lo rde , 1980; R o l l i n , 1976; S a r t o n , 1980; S v e i n s o n , 1974). The predominance of these personal accounts in the lay l i t e r a t u r e may support the be l i e f held by several theorists that an urgent need of the individual undergoing a cancer experience in his/her s e l f or family i s to communicate the experience to others and to be heard (Linn, Linn & Harris, 1982; MacDonald, 1979; Schnaper, 1977). Thus, although there i s agreement that communication i s a major factor in the way families experience the cancer, the meaning or potential meaning of the i r communications has not been established. Family philosophy As has been suggested e a r l i e r in this review, the presence of cancer may disrupt a family's objective future orientation and planning (Johnson & Norby, 1981). The uncertainty about the future that occurs with a life-threatening i l l n e s s has been articulated as a major negative force upon the emotional state of the family (Hartman, 1980). I t seems a logical extension to suspect that cancer might have a negative impact upon a family's outlook on l i f e or attitude about the future. Curiously, though, there are a number of authors who focus instead upon positive philosophical changes that are said to occur in individuals and families as a result of having experienced cancer (Ehlke, 1978; K e l l y , 1978; MacDonald, 1979; Rosenbaum, 1975). Although the detailed description of these growth experiences may be found in the lay personal accounts, their prevalence has also been noted and articulated by health care professionals. Thus i t seems appropriate to expect that attitude or l i f e philosophy changes may be a feature of the way a family experiences cancer, although the nature and direction of such change i s not yet adequately understood. 2 1 Summary The lay and scholarly l i t e r a t u r e offers abundant opinion as to the nature of the family experience when an adult member has cancer. Without research-based c r i t e r i a , however, i t i s impossible to extract from that body of material a coherent or consistent p o r t r a i t of the experience. This writer, therefore, concurs with authors who have lamented the dearth of research in the area of family experience when an adult member has cancer. While we have a vast body of theoretical material that urges nurses and other health care professionals to care for families rather than just cancer patients, we lack guidelines as to how to plan or administer this care. This writer believes that i f nurses f a i l to understand the meaning of the experience to f a m i l i e s , they have no sound basis upon which to predict problems, provide support, or a s s i s t in the prevention of future d i f f i c u l t i e s . While the theories available to us offer some common sense v a l i d i t y , one cannot e t h i c a l l y assume that they are universally relevant. This study has been designed to explore the perspectives of families who themselves are l i v i n g with cancer and to u t i l i z e those perspectives to generate description and explanation of the phenomenon. The phenomenological paradigm of q u a l i t a t i v e research, as introduced in Chapter 1 , has been selected as the most suitable methodology to guide this exploration. The manner in which the method was applied to the research questions in t h i s study w i l l be described in the following chapter. Chapter 3 Methodology In t roduc t i on The phenomenological paradigm of q u a l i t a t i v e research theory and methodology served as a guide f o r the methodolog ica l approach to t h i s s tudy . The f o l l o w i n g chapter desc r ibes the manner i n which the method was i n t e r p r e t e d and implemented i n the s e l e c t i o n of p a r t i c i p a n t s and i n the c o l l e c t i o n and a n a l y s i s of d a t a . S e l e c t i o n o f P a r t i c i p a n t s The p r i n c i p l e of t h e o r e t i c a l sampl ing d i r e c t s the researcher to acqu i re in formants dur ing the course of the research f o r the purpose of answering s p e c i f i c q u e s t i o n s . The competency of p a r t i c i p a n t s i s de te r -mined by t h e i r a b i l i t y to prov ide the knowledge and understanding tha t i s sought . Th is a b i l i t y i s r e l a t e d to such f a c t o r s as the i n fo rman ts ' p a r t i c i p a t i o n i n the exper ience f o r s u f f i c i e n t t ime to become " e n c u l t u r a t e d , " and t h e i r a b i l i t y to communicate t h e i r exper ience w i thout undue a n a l y s i s , i n t e r p r e t a t i o n , or o b j e c t i v i t y (Sp rad ley , 1979) . C r i t e r i a f o r s e l e c t i o n The c r i t e r i a used i n s e l e c t i n g f a m i l i e s f o r p a r t i c i p a t i o n i n t h i s study i nc luded the f o l l o w i n g : 1) an adu l t member who i s c u r r e n t l y under t reatment f o r some form of cance r ; 2) awareness by b o t h . p a t i e n t and f am i l y of a cancer d i a g n o s i s ; 3) a minimum of two months e lapsed t ime s i nce tha t d i a g n o s i s ; 4) a judgement by the r e f e r r i n g p h y s i c i a n tha t the i n d i v i d u a l i s not p resen t l y i n the te rmina l s tages of i l l n e s s ; 5) geographica l p rox im i ty to the Greater Vancouver a r e a ; and 6) the a b i l i t y to communicate i n E n g l i s h . S ince the f i r s t severa l f a m i l i e s to p a r t i c i p a t e i n the study were those w i th an adu l t member whose age was approx imate ly 60-years o l d , age range was inc luded as a s e l e c t i o n c r i t e r i a f o r the l a t e r f a m i l i e s i nc luded i n the s tudy . I t was the op in ion of severa l of the f a m i l i e s tha t t h e i r exper ience w i th cancer might we l l have been d i f f e r e n t had i t o c c u r r e d , f o r example, when they were a young, c h i l d - r e a r i n g f a m i l y . In dec id i ng to narrow the focus of the study to f a m i l i e s i n m id -o lde r adu l thood , the researche r hoped to ga in a r i c h e r p o r t r a i t o f t h i s sub-group a t the expense of a broader range of expe r i ences . Thus an a d d i t i o n a l s e l e c t i o n c r i t e r i a was as f o l l o w s : 7) a c a n c e r - p a t i e n t member whose age ranged from 55 to 70 y e a r s . S e l e c t i o n procedure F a m i l i e s were s e l e c t e d from one Oncology O u t - P a t i e n t C l i n i c i n the Greater Vancouver a r e a . The l i s t o f c l i e n t s a t tend ing the c l i n i c i n any g iven week was reviewed by members of the Oncology team ( p h y s i c i a n , nurse c l i n i c i a n , s o c i a l worker , and pharmacist ) i n c o n s u l t a t i o n w i th the researcher to e s t a b l i s h the c o m p a t i b i l i t y o f c l i e n t s w i th the research c r i t e r i a . Beyond these c r i t e r i a , the team tended to veto f a m i l i e s i n which h o s p i t a l i z a t i o n s or vaca t i ons .might make them u n a v a i l a b l e f o r the s tudy . When a fam i l y had been i d e n t i f i e d as a s u i t a b l e cand idate f o r p a r t i c i p a t i o n i n the s tudy , i n i t i a l con tac t was made by the p h y s i c i a n or the nurse c l i n i c i a n dur ing the c l i n i c appointment. The In format ion and Consent Form (see Appendix A) was g iven to the p a t i e n t , a long w i th a b r i e f exp lana t i on of the r e l a t i o n s h i p of the researcher to the c l i n i c . Upon reading t h i s form, i f the pa t i en t i n d i c a t e d w i l l i n g n e s s to meet the resea rche r , the i n t r o d u c t i o n was made at tha t t ime . P a t i e n t s were encouraged to take the form home and d i scuss i t w i th t h e i r f a m i l i e s , and appointments were made f o r te lephone contac t by the r e s e a r c h e r . Dur ing t h i s subsequent te lephone c o n t a c t , f a m i l i e s who agreed to p a r t i c i p a t e made appointments f o r the home i n t e r v i e w . Departures from t h i s procedure occur red i n a few i n s t a n c e s . One fam i l y approached the i n t e r v i e w e r i n the c l i n i c to request tha t i t be cons idered f o r p a r t i c i p a t i o n . In o ther i n s t a n c e s , the f am i l y group was present at the c l i n i c and consented immediately to p a r t i c i p a t i o n , a r rang ing the home i n t e r v i e w at tha t t i m e . Some f a m i l i e s s igned the consent form and re turned i t to the researche r wh i l e s t i l l a t the c l i n i c . In these c a s e s , a second copy was g iven to them to re - read at home. Most f a m i l i e s , however, s igned the consent form at the beginning of the i n i t i a l home i n t e r v i e w . Al though w r i t t e n consent was only requ i red of the cancer p a t i e n t , i t was always obta ined i n the presence of the o ther f am i l y members. Three of the f a m i l i e s who were approached d e c l i n e d to p a r t i c i p a t e i n the s tudy . In the f i r s t c a s e , the pa t i en t a n t i c i p a t e d tha t the s t r e s s of an i n t e r v i ew might be de t r imenta l to h i s p a r t n e r ' s h e a l t h . In the second c a s e , consent was g i v e n , but a s e r i e s of appointments f o r home i n te r v i ews was broken by the f a m i l y due to unan t i c i pa ted events i n the p a t i e n t ' s course of i l l n e s s , r e s u l t i n g i n h i s death a few weeks l a t e r . The t h i r d fam i l y expressed an eagerness to be i nvo l ved i n the study but a re luc tance to commit themselves to an appointment. A f t e r severa l te lephone c o n v e r s a t i o n s , they exp la ined to the researche r tha t p lann ing anyth ing ahead of t ime was con t ra r y to t h e i r s t y l e of coping w i th the changes brought about by cance r . C h a r a c t e r i s t i c s of the p a r t i c i p a n t s A t o t a l of e igh t f a m i l i e s p a r t i c i p a t e d in the s tudy . Four f a m i l i e s c o n s i s t e d of male p a t i e n t s and t h e i r w i v e s . Two c o n s i s t e d of female pa t i en t s and t h e i r husbands. In the remaining two f a m i l i e s , the pa t ien t was a widow, and the f a m i l y members were female r e l a t i v e s . In one f a m i l y , a grown c h i l d p a r t i c i p a t e d in one of the i n t e r v i e w s . The number of i n fo rmants , t h e r e f o r e , was seventeen members of e igh t f a m i l i e s . A l l p a r t i c i p a n t s were E n g l i s h - s p e a k i n g Canadians who res ided i n or near Vancouver. Most of the f am i l y groups had been toge ther more than twenty y e a r s , a l though two of the non-spouse f am i l y members d id not c u r r e n t l y res ide wi th the cancer p a t i e n t . Two of the cancer p a t i e n t s and three of the fam i l y members were employed. The remainder were unemployed, had r e t i r e d , or were on leave from work due to hea l th reasons . The s o c i o -economic s i t u a t i o n s of the f a m i l i e s were heterogeneous, and the s t y l e of l i v i n g va r i ed markedly w i t h i n the sample. The ages of the i n d i v i d u a l s wi th cancer ranged from 59 to 66 years at the t ime of the s tudy . A l l of the spouse fami l y members were from approx imate ly tha t same age b racke t , wh i le one non-spouse f am i l y member was o l d e r , and two were younger . Of the e ight i n d i v i d u a l s w i th cancer two had breast c a n c e r , and two had lung cancer . The remaining four had stomach c a n c e r , bowel cance r , Hodgk in 's d i s e a s e , and m u l t i p l e myeloma. In r e l a t i o n to these c a n c e r s , f i v e had completed at l e a s t one course of chemotherapy, wh i l e the other three were r e c e i v i n g chemotherapy at the t ime of t h e i r p a r t i c i p a t i o n in the s tudy . F i v e i n d i v i d u a l s had undergone one or more s u r g i c a l procedures in r e l a t i o n to t h e i r cance r , and two had rece i ved r a d i a t i o n t he rapy . A l l pa t i en t s had been t r e a t e d by the same p h y s i c i a n i n the Oncology C l i n i c , al though most had many o ther p h y s i c i a n s i n v o l v e d w i th the ' i r t reatment a t va r i ous phases of the expe r i ence . At the t ime of t h e i r p a r t i c i p a t i o n i n the s t u d y , the f a m i l i e s had been l i v i n g w i t h the f a c t o f a d iagnosed cancer f o r per iods of t ime ranging from three months to f i v e y e a r s , the average being about two y e a r s . Data C o l l e c t i o n Al though the processes w i l l be presented sepa ra te l y i n t h i s d i s c u s s i o n , data c o l l e c t i o n and a n a l y s i s d i d not c o n s t i t u t e d i s t i n c t phases of the implementat ion o f t h i s methodology. Data were ana lyzed throughout the e n t i r e c o l l e c t i o n phase, and , i n t u r n , a n a l y t i c ma te r i a l i n f l u e n c e d the data c o l l e c t i o n p r o c e s s . The data were c o l l e c t e d i n a s e r i e s o f i n t e n s i v e i n t e r v i ew sess ions i n the homes of the p a r t i c i p a n t f a m i l i e s . A se t of sample ques t ions was cons t ruc ted f o r the purpose of p r o v i d i n g a loose s t r u c t u r e f o r the i n i t i a l i n t e r v i e w s (see Appendix B ) . The ques t ions i n c l u d e d i n t h i s l i s t evo lved from the problem statement f o r t h i s study and took i n t o c o n s i d e r a t i o n the themes ex t rac ted from the review of p e r t i n e n t l i t e r a t u r e (Chapter 2). Mo attempt was made to s tanda rd i ze the i n t e r v i e w process between f a m i l i e s ; r a t h e r , the guide s imply served as a too l f o r f a c i l i t a t i n g e x p l o r a t i o n of the general content areas when they d i d not emerge i n the f a m i l y ' s accounts spontaneous ly . As the data c o l l e c t i o n phase p rog ressed , areas of concern were added to or de le ted from t h i s o r i g i n a l l i s t . Such changes r e f l e c t e d the themes tha t emerged as s i g n i f i c a n t from the pe rspec t i ves of the in formant f a m i l i e s and f a c i l i t a t e d an i n c r e a s i n g depth of e x p l o r a t i o n w i t h i n those themes. The data were cons t ruc ted through a s e r i e s of e leven i n t e r v i e w s w i th a t o t a l of e i gh t f a m i l i e s . Fo l l ow ing an i n i t i a l i n t e r v i e w w i th each of s i x f a m i l i e s , a pe r iod of sys temat ic r e f l e c t i o n r e s u l t e d i n a more s p e c i f i c focus to the i n v e s t i g a t i o n . When th ree of these o r i g i n a l f a m i l i e s were u n a v a i l a b l e f o r a second i n t e r v i e w (one p a t i e n t had been h o s p i t a l i z e d and subsequent ly d i e d ; one f am i l y l e f t the count ry i n search of a l t e r n a t e t rea tment ; and one f am i l y d e c l i n e d to be in te rv iewed again due to a busy s c h e d u l e ) , an a d d i t i o n a l two f a m i l i e s were r e c r u i t e d . In s p i t e of the f a c t tha t these f a m i l i e s had not p a r t i c i p a t e d i n the i n i t i a l round of i n t e r v i e w i n g , and thus had not con t r i bu ted to the data tha t shaped the second i n t e r v i e w approach, the depth and r i chness of t h e i r accounts were comparable to those wi th which rapport had been p rev i ous l y e s t a b l i s h e d . The a c q u i s i t i o n of these new f a m i l i e s at t h i s po in t i n the process u l t i m a t e l y proved f o r t u i t o u s i n tha t t h e i r v a l i d a t i o n of the themes and r e l a t i o n s h i p s ex t rac ted from the o r i g i n a l in formant group enhanced the r e s e a r c h e r ' s conf idence both in her i n t e r p r e t a t i o n s and i n the c r e d i b i l i t y of her d a t a . The in te rv iews themselves took p lace over a per iod of 2 1/2 months. They ranged from 1 1/2 to 3 1/2 hours i n length and t o t a l l e d 26 1/2 contact hours . Of t h a t , a t o t a l of 13 hours of d ia logue was recorded on audio t a p e , 45 to 90 minutes per i n t e r v i e w . Although f a m i l i e s seemed to speak f r e e l y i n the presence of the audio tape reco rde r , severa l of them requested tha t the machine not be r e s t a r t e d once the f i r s t c a s s e t t e tape was completed. Many used the occas ion of the automatic shu t -o f f to serve refreshments or to t a l k about t o p i c s unre la ted to t h e i r cancer expe r i ence . When s i g n i f i c a n t sub jec ts d i d en te r i n t o the ensuing c o n v e r s a t i o n , t h e i r substance was recorded i n f i e l d notes made immediately upon l e a v i n g the i n t e r v i e w . Whi le a l l f a m i l i e s were extended the op t ion of stoppage or erasure of the tape at any p o i n t , on ly one e l e c t e d to do s o . In t h i s c a s e , a po r t i on of tape tha t inc luded mention by a f am i l y member of f i n a n c i a l s t a tus was erased i n the presence of the f a m i l y . In the same i n t e r v i e w , the tape was a l so rep layed i n par t t o the f a m i l y , s i nce one member had never heard the sound of h i s recorded vo ice and wished to do so . The lack^ of i n h i b i t i o n in the presence of the tape recorder of t h i s and o ther f a m i l i e s was r e f l e c t e d i n the permiss ion g iven by severa l f o r the researcher to p lay the tape to o ther p a t i e n t s or f a m i l i e s . Al though the c o n f i d e n t i a l i t y guaranteed to the p a r t i c i p a n t s prec luded such use , the researcher thanked them f o r the o f f e r and res ta ted the general c o n t r i b u t i o n they had made by p a r t i c i p a t i n g . The verbat im t r a n s c r i p t i o n s of audio ' tapes and the d e t a i l e d f i e l d notes made a f t e r each i n t e r v i e w formed the bulk of the data base f o r t h i s s tudy . F i e l d notes were a l s o made f o l l o w i n g a l l te lephone conversa t ions in the course of p lann ing and a r rang ing i n t e r v i e w s . Included i n these notes were summaries of the conversa t ions w i th members of the th ree f a m i l i e s who dec l i ned to p a r t i c i p a t e , s i nce severa l of these conversa -t i o n s l a s t e d over 30 minutes and inc luded much u n s o l i c i t e d d i s c u s s i o n of the themes w i t h i n the r e s e a r c h . An a d d i t i o n a l data source evo lved from the request made by two f a m i l i e s tha t the researcher attempt to i nc lude t h e i r grown c h i l d r e n l i v i n g away from home in the s tudy . In response to t h i s reques t , a s tandard ized l e t t e r (see Appendix C) was sent to each of seven c h i l d r e n from these two f a m i l i e s , i n v i t i n g them to make w r i t t e n c o n t r i b u t i o n s i f they w ished . Two lengthy and d e t a i l e d responses were r e c e i v e d . Rapport between the researcher and the p a r t i c i p a n t f a m i l i e s was e s t a b l i s h e d wi th no major d i f f i c u l t i e s . Many expressed p leasure at being asked to make a c o n t r i b u t i o n to nurs ing knowledge i n general and to the r e s e a r c h e r ' s l e a r n i n g i n p a r t i c u l a r . F a m i l i e s tended to p lace the home i n t e r v i ew i n a s e m i - s o c i a l c o n t e x t , i n t ha t refreshments were always s e r v e d , and most f a m i l i e s requested tha t the researcher remain longer and " v i s i t " a f t e r the " i n t e r v i e w " was comple ted. F a m i l i e s seemed eager to be b e l i e v e d by the r e s e a r c h e r . * F F : Now are we. . .am I u h . . . ? R: Yeah. You ' re t e l l i n g me very i n t e r e s t i n g t h i n g s . F F : U h . . . u h . . . some people don ' t want to l i s t e n to my s t o r i e s because t h e y ' r e hot t r u e . But they are t r u e . The i r e f f o r t s to v a l i d a t e t h e i r s t o r i e s o f ten extended to p rov i d i ng tours o f the home, l ook ing through photograph albums, and b r i n g i n g o ther a r t i f a c t s and memorabi l ia out of the c l o s e t s to show the r esea rche r . I t was the r e s e a r c h e r ' s impress ion tha t the p a r t i c i p a n t s enjoyed the exper ience of being l i s t e n e d t o : MC: You being a n u r s e . . . I mean. . .you see a l l these k inds of th ings and you know, i t . . . y o u understand i t . R: Well I 've c e r t a i n l y apprec ia ted hear ing what you had to say . F F : I was i n t e r e s t e d i n you too because I...I mean I 've never had an i n t e r v i ew l i k e t h i s b e f o r e . . . a n d u h . . . i t ' s n i ce to t a l k to someone who knows something about i t . Cons t ruc t i on o f accounts The c o n s t r u c t i o n of accounts r e f l e c t e d an e v o l v i n g i n t e r a c t i o n between the p a r t i c i p a n t s and the r esea rche r . The researcher approached the study wi th a se t of i n i t i a l ques t ions tha t r e f l e c t e d p r i o r assumptions and unders tand ings . Throughout the course of data c o l l e c t i o n , these assumptions were r e v i s e d , a f f i r m e d , or d i sca rded as the exper t w i tnesses desc r ibed and exp la ined t h e i r r e a l i t i e s . A g rea te r degree of common *No te : R = researcher FC = female i n d i v i d u a l w i th cancer MC = male i n d i v i d u a l w i th cancer FF = female f am i l y member MF = male f am i l y member understanding between the researcher and p a r t i c i p a n t s evo lved over t ime , f a c i l i t a t e d by the use of v a l i d a t i o n , r e f l e c t i o n , and restatement th rough-out the i n t e r v i e w s . As the r e s e a r c h e r ' s understandings of the exper ience shared by the p a r t i c i p a n t s grew, the inc reased r i chness and depth of the data tha t emerged from the in te rv iews appeared to r e f l e c t tha t growth. The accounts not on ly desc r i be but a l s o e x p l a i n the phenomenon as perce ived by the p a r t i c i p a n t s . Al though f a m i l i e s requ i red l i t t l e prompting to t a l k of t h e i r exper ience i n d e t a i l , i t was on ly as the r e s e a r c h e r ' s f a c i l i t y w i th ask ing the " r i g h t " quest ions developed tha t the exp lana t ions a l so began to emerge. The r e s e a r c h e r ' s impress ion was tha t t h i s exp lanatory l a y e r of the account was a product o f the " r i g h t " quest ions ra the r than the degree of in t imacy i n the research r e l a t i o n s h i p . Th is impresss ion was supported by the r i chness and depth of the exp lana t ions o f fe red by the two new f a m i l i e s who p a r t i c i p a t e d on ly at the l a t e r stages of the s tudy . E t h i c a l c o n s i d e r a t i o n s P r i o r approval f o r t h i s study was obta ined from the U n i v e r s i t y o f B r i t i s h Columbia 's Screen ing Committee f o r Research I nvo l v i ng Human S u b j e c t s . The r i g h t s of p a r t i c i p a n t s were p ro tec ted i n the f o l l o w i n g ways: 1) No in te rv iews occurred wi thout the w r i t t e n consent of the pa t ien t on beha l f of h i s or her f a m i l y . 2) A d e s c r i p t i o n of the study and an exp lana t ion of the r e s e a r c h e r ' s expec ta t ions of p a r t i c i p a n t s was made a v a i l a b l e to p a t i e n t s and f a m i l i e s p r i o r to ob ta in ing consent (see Appendix A ) . 3) Both pa t i en t s and f a m i l i e s were adv ised tha t n o n - p a r t i c i p a t i o n in the study would in no way a f f e c t the t reatment or care they r e c e i v e d . 4) P r i o r to i n t e r v i e w s , a l l f am i l y members were reminded tha t t h e i r r i g h t not to p a r t i c i p a t e , by l e a v i n g the i n t e r v i e w or by remaining s i l e n t , would be u n c o n d i t i o n a l l y r espec ted . 5) P a t i e n t s and f a m i l i e s were informed tha t taped ma te r i a l would be kept anonymous and c o n f i d e n t i a l , t ha t tapes would be erased upon comple t ion of the s tudy , and tha t w r i t t e n mate r ia l and t r a n s c r i p t s i n r e l a t i o n to the study would not use any names or i d e n t i f y i n g f a c t o r s . 6) P a r t i c i p a n t s were informed tha t p a r t i c i p a t i o n i nvo l ved no expected r i s k s . P o t e n t i a l b e n e f i t s to the f a m i l i e s were l i m i t e d to those inheren t i n c o n t r i b u t i n g to nurs ing knowledge and to the process of communicating exper iences as a f a m i l y . Data A n a l y s i s Throughout the data c o l l e c t i o n p r o c e s s , the verbat im t r a n s c r i p t i o n s and f i e l d notes made by the researcher were reviewed and compared f o r emergent themes w i t h i n the accoun ts . As i n t e r r e l a t i o n s h i p s were i d e n t i f i e d and p ieces of data were c l u s t e r e d , the conceptual c a t e g o r i e s t ha t were generated ach ieved h igher l e v e l s of a b s t r a c t i o n . Repeated review of the concre te data and v a l i d a t i o n i n ensuing i n t e r v i ews c rea ted a means of ensur ing tha t a b s t r a c t i o n s remained s o l i d l y grounded i n the data themselves . Fo l l ow ing i n i t i a l i n t e r v i e w s w i th s i x f a m i l i e s , a t e n t a t i v e a n a l y t i c framework was developed. I t was t h i s framework tha t guided the scope and l e v e l of e x p l o r a t i o n i n the second round of i n t e r v i e w s , i n c l u d i n g those tha t occur red w i th the two new p a r t i c i p a n t f a m i l i e s . The data tha t emerged i n the second round of i n t e r v i ews shaped the f i n a l a n a l y t i c f rame-work f o r o rgan i z i ng the data i n a manner t ha t would bes t represent the common exper ience of the f a m i l i e s and enhance understanding of t h e i r accoun ts . Summary The methodology f o r t h i s study was based on the phenomenological paradigm of q u a l i t a t i v e r e s e a r c h . P a r t i c i p a n t s were s e l e c t e d by v i r t u e of t h e i r competence to t e s t i f y as to the exper ience of f a m i l i e s wherein an a d u l t member i s l i v i n g w i th cance r . E igh t cancer p a t i e n t s and nine f am i l y members, to a t o t a l of 17 peop le , p a r t i c i p a t e d i n e leven i n t e r v i ews over a 2 1/2 month p e r i o d . The data were comprised of t r a n s c r i b e d audio tapes and f i e l d notes from these i n t e r v i e w s . Concur ren t l y w i th and subsequent to these i n t e r v i e w s , data a n a l y s i s took p l a c e . The a n a l y t i c process had an impact upon the data c o l l e c t i o n , p a r t i c u l a r l y i n the l a t t e r phases, by gu id ing the focus of e x p l o r a t i o n and the depth o f meaning sought by the r e s e a r c h e r . In t h i s manner, the p a r t i c i p a n t s and the researcher together cons t ruc ted the accounts tha t w i l l be presented i n Chapter 4 . Chapter 4 The F a m i l i e s ' Accounts I n t roduc t i on Th is chapter w i l l p resent the accounts g iven by the p a r t i c i p a n t f a m i l i e s as they desc r i be and e x p l a i n the exper ience of everyday l i f e when an adu l t f ami l y member has cance r . I t i s recogn ized tha t each fam i l y o f f e r s a unique pe rspec t i ve and exper iences the cancer accord ing to i t s unique c i r cums tances . While no two f a m i l i e s t e l l the same s t o r y , c e r t a i n themes occur repeated ly i n the fam i l y accoun ts . The s i m i l a r i t i e s and d i f f e r e n c e s between f a m i l i e s w i t h i n these themes desc r ibe and e x p l a i n aspects of the common expe r i ence . The d e s c r i p t i o n and exp lana t i on tha t f o l l o w use these themes as an o r g a n i z i n g framework f o r p resen t i ng the f a m i l i e s ' accoun ts . S ince the themes are not r ep resen ta t i ve of separate and d i s t i n c t f a c e t s o f the e x p e r i e n c e , the r e l a t i o n s h i p and i n t e r a c t i o n s between themes w i l l become apparent i n the p resen ta t i on of accoun ts ; and i t i s the i n t e n t i o n of the w r i t e r t ha t e x p l o r a t i o n o f each of the segments w i l l f a c i l i t a t e an understanding of the whole. Dur ing the i n t e r v i ew p r o c e s s , the f a m i l i e s cons t ruc ted accounts t ha t desc r ibed the impact of cancer upon t h e i r everyday l i v e s . The i r d e s c r i p t i o n s d i f f e r e n t i a t e d those aspects of l i f e tha t had changed as a r e s u l t o f cancer from these i n which former pa t te rns had endured. The accounts f u r t h e r revea led the c r i t e r i a by which f a m i l i e s measured and eva lua ted such changes. Th is d e s c r i p t i v e l a y e r of the accounts demonstrated the complex and m u l t i f a c e t e d nature o f f am i l y r e a l i t y . Jux tapos ing and c o n t r a d i c t o r y accounts emerged i n t h i s d e s c r i p t i v e p r o c e s s . Apparent c o n t r a d i c t i o n s were both a l l u d e d to and expressed openly at va r i ous t imes i n the process of c o n s t r u c t i n g the accoun ts . Al though some aspects o f the cancer exper ience appear incongruous accord ing to these accoun ts , i t w i l l be shown tha t they are not pe rce ived as incongruous by the cancer f a m i l i e s . While f a m i l i e s present d e s c r i p t i o n s of t h e i r exper ience tha t i nc l ude c o n t r a s t i n g va lues and b e l i e f s , they are a l s o ab le to e x p l a i n these c o n t r a s t s and make sense of the apparent c o n t r a d i c t i o n s . I t i s e s s e n t i a l t ha t a l l r e a l i t i e s descr ibed by these f a m i l i e s be assumed to be e q u a l l y v a l i d , whether or not they appear c o n t r a d i c t o r y . I t must a l s o be remembered tha t the accounts presented here are these a r t i c u l a t e d by fam i l y groups, and thus may i n c l u d e more comp lex i t i e s and c o n t r a d i c t i o n s than would those cons t ruc ted by i n d i v i d u a l fami l y members. The fam i l y cancer exper ience w i l l no t , t h e r e f o r e , be desc r ibed as a s imple phenomenon, but r a the r as a ka le idoscope of r e a l i t i e s , none of which can be f u l l y app rec ia ted apar t from the g e s t a l t of the whole. The d e s c r i p t i v e l a y e r of the accounts w i l l form the f i r s t sec t i on o f t h i s chap te r . The subsequent two s e c t i o n s w i l l address the two exp lana to ry l a y e r s which emerged i n the process of c o n s t r u c t i n g the accoun ts . Thus the three s e c t i o n s of t h i s chapter may be viewed as rep resen t i ng three d i f f e r e n t orders of account , w i th the exp lana tory l a y e r s i n c r e a s i n g i n depth as the chapter p rog resses . The second s e c t i o n of t h i s chapter a r t i c u l a t e s the r e l a t i o n s h i p s f a m i l i e s i d e n t i f i e d between t h e i r i l l n e s s exper iences and the manner i n which they were l i v i n g t h e i r everyday l i v e s . These r e l a t i o n s h i p s were expressed i n terms of s t r a t e g i c cho ices made by f a m i l i e s as they coped wi th the cancer e x p e r i e n c e . F a m i l i e s exp la ined themselves and t h e i r behav io rs w i t h i n the cancer exper ience i n terms of a s t r u c t u r e o f cop ing s t r a t e g i e s . Th is second s e c t i o n w i l l address the pa t te rns tha t emerged w i t h i n the accounts of those s t r a t e g i c c h o i c e s . Throughout t h i s s e c t i o n , the concept of a t t i t u d e w i l l emerge repeated ly i n the fam i l y accoun ts . As the exp lana t ions of the cancer exper ience progress through a range of themes i n the f a m i l i e s ' s t r a t e g i c p a t t e r n s , the a s s o c i a t i o n between a t t i t u d i n a l and behav io ra l s t r a t e g i e s w i l l become apparent . A more thorough examinat ion o f a t t i t u d e s w i l l occur i n the t h i r d s e c t i o n o f t h i s chap te r . A t t i t u d e s w i l l be presented as the t h i r d l a y e r o f the f a m i l i e s ' accounts o f the cancer expe r i ence . Th is f i n a l l a y e r w i l l demonstrate the f a m i l i e s ' i n t e g r a t i o n of the m u l t i f a c e t e d and c o n t r a d i c t o r y cancer exper ience i n t o a u n i f i e d whole . Through the use of a t t i t u d e s tha t conform to t h e i r unique and c h a r a c t e r i s t i c b e l i e f s and v a l u e s , f a m i l i e s exp la ined the manner i n which they made sense of and i n t e g r a t e d the cancer exper ience i n t o the con tex t of t h e i r l i v e s . Thus t h i s l a y e r of the accounts e x p l a i n s the apparent c o n t r a d i c t i o n s tha t emerged i n the d e s c r i p t i o n of the impact of cancer and p rov ides a framework wi th which to make sense of the many r e a l i t i e s t ha t c o e x i s t i n the f am i l y cancer expe r i ence . D e s c r i b i n g the Impact Th is f i r s t s e c t i o n of the accounts desc r i bes the psychosoc ia l impact of cancer upon aspects o f everyday l i f e as a r t i c u l a t e d by the f a m i l i e s . Th i s d e s c r i p t i v e l a y e r of the accounts has been organ ized accord ing to the four general themes tha t emerged from the t h e o r e t i c a l l i t e r a t u r e review i n Chapter 2 as be ing p a r t i c u l a r l y r e l e v a n t to the fami l y cancer e x p e r i e n c e . D i scuss ion of these themes w i l l be preceded by a b r i e f d e s c r i p t i o n of the general impact o f cancer as a r t i c u l a t e d by the f a m i l i e s . The c o n t r a s t s between t h i s general pe rcep t ion and o ther aspects o f the d e s c r i p t i v e accounts w i l l become apparent as fam i l y emotional s t a t e , r o l e s , communicat ion, and ph i losophy are exp lo red i n r e l a t i o n to the impact of cance r . L a t t e r s e c t i o n s of t h i s chapter w i l l e x p l a i n the presence of c o n t r a d i c t o r y r e a l i t i e s w i t h i n the accoun ts . I t i s the purpose of t h i s s e c t i o n , however, merely to na r ra te those r e a l i t i e s i n the language of the f a m i l i e s themselves . General pe rcep t ions The fami l y pe rcep t ion tha t cancer had not s u b s t a n t i a l l y changed any th ing was expressed by a l l the p a r t i c i p a n t s . Two f a m i l i e s , when approached to p a r t i c i p a t e i n the s tudy , i n d i c a t e d w i l l i n g n e s s to help the r e s e a r c h e r , but expressed the concern t ha t they might not be of much a s s i s t a n c e s ince cancer had not r e a l l y changed t h e i r l i v e s . The remaining f a m i l i e s a r t i c u l a t e d t h i s pe rcep t ion as i n t r oduc to r y statements i n t h e i r i n t e r v i e w s . MF: As f a r as i t a f f e c t i n g our l i v e s , we ' re no d i f f e r e n t than what we were when we were f i r s t m a r r i e d . I t h a s n ' t a f f e c t e d us a t a l l . We s t i l l f ee l the same, okay? MF: And t h i s . . . i t ' s . . . i t ' s j u s t an accepted t h i n g . I t ' s j u s t . . . w e l i v e a normal l i f e . FC: No th ing ' s changed so f a r anyway. A l l of the f a m i l i e s had exper ienced chemotherapy as par t of the medical t reatment f o r the i n d i v i d u a l w i th cance r . When f a m i l i e s q u a l i f i e d t h e i r pe rcep t ions tha t noth ing had changed, severa l a t t r i b u t e d change to s p e c i f i c s ide e f f e c t s of tha t chemotherapy, such as h a i r l o s s , l e t h a r g y , and nausea. F F : But i t . . . u h . . . j u s t seems to b e . . . u h . . . o h we go on j u s t as u s u a l . We d o n ' t . . . I d o n ' t th ink we've changed anyth ing s i n c e . Have we? I don ' t th ink we h a v e . . . FC: No. F F : . . . changed our way of l i f e . FC: Except t ha t the only change I have i s . . . u h . . . t w o d i f f e r e n t s t y l e d wigs ( c h u c k l e ) . R: So t h e r e ' s a change i n h a i r d o . T h a t ' s the on ly change i n your l i f e ? FC: Tha t ' s the on ly change I t h i n k . When s ide e f f e c t s were d e s c r i b e d , they were f r equen t l y mentioned i n * the con tex t of what hadn ' t changed as opposed to what had. MC: I t j u s t takes a l o t . . . a s I s a y . . . t h i s chemotherapy. The on ly t h i n g . . . I ' m very f o r t u n a t e . . . i s a l l i t does i s make me t i r e d . I haven ' t been s i c k . I haven ' t l o s t my h a i r , thank goodness. F F : You d i d n ' t have any to l o s e . MC: Thank goodness f o r t h a t . In a d d i t i o n to the common exper ience of chemotherapy, the f a m i l i e s a l s o shared a common matura t iona l s t a g e , a t l e a s t i n terms of the age of the member who had cance r . The pe rcep t ion of aging seemed to be a fea tu re o f the general not ion tha t cancer had not produced major change. FC: Happening now at t h i s stage i n my l i f e . . . u m . . . 1 don ' t know tha t I 've slowed down any m o r e . . . u m . . . t h a n I would have anyway. FF : I don ' t know tha t t h e r e ' s a n y t h i n g ' s r e a l l y changed. I t ' s j u s t t h a t . . . MC: Slowed down. F F : I t ' s slowed down a l o t . We don ' t do something tha t we might have done b e f o r e , but then we ' re g e t t i n g o l de r t oo . Thus where change had o c c u r r e d , f a m i l i e s o f ten a t t r i b u t e d i t to stage of l i f e or to s ide e f f e c t s from chemotherapy. The unanimous a s s e r t i o n t ha t cancer had produced l i t t l e change was an i n t r i g u i n g i n t r o d u c t i o n to the exper ience of these f a m i l i e s . As the c o n s t r u c t i o n of accounts was pursued , however, many changes d i r e c t l y r e s u l t i n g from the cancer exper ience d id i n f a c t emerge and were e x p l a i n e d . I t i s only through an understanding of the exper ience as pe rce ived and a r t i c u l a t e d by the f a m i l i e s themselves tha t one can make sense of t h i s i n i t i a l g e n e r a l i z a t i o n . D e s c r i p t i o n of the impact of cancer upon the psychosoc ia l aspects of everyday fam i l y l i f e w i l l now be presented i n r e l a t i o n to the f a m i l i e s ' emotional s t a t e , r o l e s , communicat ion, and ph i l osophy . Wi th in each of these general themes, the concepts and i s sues of concern w i l l be i d e n t i f i e d and desc r ibed as a r t i c u l a t e d by the f a m i l i e s . Impact on emotional s t a te Al though the d iagnos i s exper ience was not an in tended focus of the research i n t e r v i e w , d i agnos i s s t o r i e s emerged spontaneously as i n t e g r a l memories i n the shaping of the f a m i l i e s ' exper iences wi th cance r . Whether the event had occur red f i v e months or f i v e years p r e v i o u s l y , the f a c t u a l d e t a i l and emotional overtones of the cancer d iagnos i s seemed f r esh i n the minds of the p a r t i c i p a n t s . For many f a m i l i e s , the d iagnos i s s to ry served as a beg inn ing po in t from which to launch a d e s c r i p t i o n of t h e i r p resent expe r i ence . The f o l l o w i n g excerp t from a l e t t e r to the researcher demonstrates the drama of tha t event . MF: The c i r c u s con t i nued . F i n a l l y a f t e r mom had undergone weeks and weeks of t e s t i n g and pa in i n the h o s p i t a l , the fam i l y c o l l e c t e d to g ive mom support wh i l e her doctor and the cancer s p e c i a l i s t gave the r e s u l t s of weeks of t e s t i n g . Cancer! The per iod immediately f o l l o w i n g the d iagnos i s was desc r ibed by many f a m i l i e s as the most emot iona l l y t ax i ng t ime of the cancer exper ience to da te . MC: I 'd never been s i c k . And u h . . . t o a l l of a sudden . . .he re i t i s . . . c a n c e r , you know. I t shocked everybody. R: mm hmm. MC: So I guess t h a t ' s probably the o n l y . . . w e l l not the on ly t ime but t h e . . . t h a t was one of the b i g g e s t . F F : That was the ha rdes t . Al though f a m i l i e s acknowledged tha t emotional d i s r u p t i o n had r e s u l t e d from the d i a g n o s i s , they tended to pe rce i ve i t , a t l e a s t i n h i n d s i g h t , as something somewhat l e s s than c a t a s t r o p h i c . F F : At f i r s t i t was a . . . a dreadfu l shock to both of us because u h . . . a s you know [she] has never been s i c k i n her l i f e . R: mm hmm. FC: U n t i l t h i s h i t . And we c o u l d n ' t b e l i e v e i t . I c o u l d n ' t b e l i e v e i t . And t h e n , you ad jus t to a l l these t h i n g s . R: Did tha t take a long t i m e . . . t h a t adjustment? FF : No, i t d i d n ' t . Uh . . . once you ' ve accepted i t and you knew what i t was going to be. 40 R: When you were f i r s t diagnosed w i th cancer d i d you f i n d t h a t . . . t h a t there was a pe r i od of t ime tha t was very d i s r u p t i v e f o r you? Or was tha t a very upse t t i ng t ime? MC: Noth ing . Nothing a t a l l . I t d i d n ' t bother m e . . . i t d i d n ' t . . . o h maybe i t bothered my w i f e . R: mm hmm. MC: And she c r i e d a b i t . R: mm hmm. MC: But i t d i d n ' t bother me any. Thus wh i le f a m i l i e s s a i d t ha t cancer had produced no se r i ous d i s r u p t i o n i n t h e i r emotional s t a t e , they a l l d i d speak of cancer as having an impact on t h e i r moods and f e e l i n g s . Anger was f r equen t l y mentioned as an i n i t i a l r e a c t i o n to the events assoc i a t ed w i th the d i a g n o s t i c and e a r l y t reatment phases. F F : I know how I f e l t when I f i r s t heard about i t . I f e l t anger . F F : You know when I found out t ha t the u h . . . t h e doctor d i d n ' t do the r i g h t t h i n g . . . . S h e d i d n ' t have any chemotherapy a f t e r the mastectomy, which she should have h a d . . . a n d u h . . . o f course the anger f l a r e d up again a t why t h e . . . t h e d o c t o r , being a d o c t o r , wou ldn ' t have known what to do. Anger t ha t had begun i n the e a r l y phase p e r s i s t e d f o r some of the f a m i l i e s . The f o l l o w i n g statement w r i t t e n by a fam i l y member demonstrates anger toward past events being exper ienced i n the p resen t : MF: As you may have p i cked out by my word ing , I am angry , as ton ished and d i sappo in ted w i th the t o t a l crew of doctors and s p e c i a l i s t s i nvo l ved throughout the p a i n f u l ordeal mom has gone th rough. Where a t a r g e t f o r such f e e l i n g s was named, i t was o f ten l o c a t e d w i t h i n the hea l th care system. MF: We're not f e e l i n g so much angry as b i t t e r about i t . R: B i t t e r ? MF: From the general run-around. F e e l i n g s of unce r t a i n t y were a l s o commonly mentioned and were desc r i bed as a fundamental adversary to the emotional w e l l - b e i n g of the cancer f a m i l i e s . F F : I th ink i t ' s . . . i t ' s the unknown. Cause every t ime t ha t [he] goes down. . .we l l now we've reached a po in t tha t we a c t u a l l y know t h i s tumour i s a c t i n g up a g a i n , and u h . . . b u t every t ime w a i t i n g to f i n d out what ' s the d i a g n o s i s . . . w h a t are the doc to rs going to say and um. . . then he comes back and s a y s , "Well t hey ' ve done another t e s t . " And i t ' s j u s t con t i nuous . I t ' s the unknown of a l l o f i t . I t ' s the unknown. Not knowing what the next t e s t . . . o r how long y o u ' r e going to have to w a i t . And he gets r e a l l y keyed up on a day we ' re going to know the r e s u l t s , and then he comes home and , "Well t h e y ' r e going to do a scope , " or whatever , you know. I t h ink t h i s i s the ha rdes t . FF : People f e a r the unknown more than any th ing e l s e . I d o n ' t blame them. Emotional r e a c t i o n s to the unce r t a i n t y were apparent i n a l l f a m i l i e s and were expressed i n va r i ous f a s h i o n s . F F : Oh I am w o r r i e d , you know. F F : I t ' s a rea l downer. FF : I'm a tense type of person . I'm a . . . y o u know I'm f a i r l y hyper. Um.. . I can get very keyed up and emotional over t h ings and I know there are t imes I can f e e l i t , you know. . . I can f ee l t h a t . I have a tendency to s u f f e r from a type of migra ine or t ens ion headaches, and t h i s has d e f i n i t e l y i n c r e a s e d , you know, s i nce t h i s has happened. U m . . . i t ' s j u s t u m . . . ' c o u r s e I d o n ' t th ink i t ' s as much of a w o r r y . . . I mean we' re l ook ing a t i t now. I don ' t know how I'm going to be when um. . . . I suppose the Lord w i l l g ive me s t reng th when [he] becomes r e a l l y bedr idden . FF : I know I f i n d u h . . . e v e r y once i n awhi le you j u s t s o r t o f . . . y o u wake up c r y i n g . I don ' t th ink a t t imes tha t I 've been dreaming. Maybe i t ' s r e l e a s e of p r e s s u r e . I d o n ' t know. U m . . . I ' l l wake up some mornings and u h . . . j u s t suddenly s t a r t c r y i n g , and I d o n ' t th ink i t ' s j u s t tha t i t ' s b u i l t up , and you know u m . . . R: mm hmm. F F : I guess you h a v e . . . y o u have to l e t i t go. You have t o . I r r i t a b i l i t y a s s o c i a t e d w i th the a f t e r - e f f e c t s o f chemotherapy was a f ea tu re o f the emotional s t a t e of some of the i n d i v i d u a l s w i th cance r . R ( to F F ) : So i t doesn ' t upset you too much tha t h e ' s i r r i t a b l e ? MC: Oh no. No, w e . . . w e ' r e very compat ib le the two of u s . R: mm hmm. MC: Yeah. L i k e uh.. .maybe I might get mad a t her and then two minutes t ime j u s t . . . " D o n ' t you want something to e a t , l o v e ? " And then t h a t ' s i t . T h a t ' s a l l f o rgo t ten ( l augh ) . FF : But t h a t ' s the way i t does a f f e c t h im. MC: Yeah. F F : I r r i t a b l e . T h a t ' s about the worst pa r t of i t , I guess . MC: She 's wor r i ed even now. F F : Well you do because he gets so t i r e d sometimes and you know. . . MC: Says I get cranky ( l a u g h ) . F F : W e l l . . . MC: I w i l l be honest ( l a u g h ) . R: He gets c ranky , eh? F F : Hmm...well h e . . . MC: Probably I d i d you know. Sometimes I probably was i r r i t a b l e a l i t t l e . Al though i t was f r equen t l y mentioned by the f a m i l i e s , i r r i t a b i l i t y d i d not appear to be a p a r t i c u l a r l y d i s t u r b i n g aspect of t h e i r day- to-day l i v i n g . MC: And u h . . . a s I s a y . . . M y b i t c h i n g , and I . . . r e a l i z e tha t I have done a l o t of moaning and compla in ing and b i t c h i n g and s h i t l i k e t h a t . F F : When y o u ' r e not f e e l i n g good, you do those t h i n g s , (pause) And i f h e ' s not comp la i n i ng , t h e r e ' s something wrong ( l augh ) . R: Is t h i s a c h a n g e . . . t h i s compla in ing? Or i s t h i s . . . F F : No. He done tha t a l l h i s l i f e . FC: Maybe t h a t ' s my way of l i f e . I d o n ' t know. And I d o n ' t no t i ce the d i f f e r e n c e ( l a u g h ) . No, I don ' t th ink I'm grouchy, am I? F F : No. FC: Not any more than usual ( l a u g h ) . F F : J u s t the same ( l a u g h ) . Whi le emotional r e a c t i o n s were d i scussed by p a t i e n t s and f am i l y members a l i k e , severa l of the p a t i e n t s expressed the op in ion tha t t h e i r pa r tne r had s u f f e r e d t h e l i o n ' s share of the emotional impact of cance r . MC: She took the brunt o f e v e r y t h i n g . MC: I th ink i t ' s a l i t t l e tougher o n . . . u h . . . t h e p a r t n e r , 'cause the f a c t i s t h a t . . . y o u know. . . I 'm the one tha t has the pa in whenever I have a p a i n , which very f o r t u n a t e l y I haven ' t had too much y e t , and so i t ' s a l i t t l e harder on the pa r tne r than i t i s on the person who has i t I t h i n k . At l e a s t t h a t ' s the way I f e e l . You know I 've found um...maybe i n o ther f a m i l i e s i t ' s d i f f e r e n t , but t h a t ' s what we f e e l . Although the par tners d i d not n e c e s s a r i l y concur w i th the v i e w p o i n t , the f a m i l i e s c l e a r l y i n d i c a t e d tha t the emotional impact upon fam i l y members was a t l e a s t as ex tens i ve as the impact upon the p a t i e n t s themselves. R: You th ink i t ' d be b e t t e r i f you had i t than i f he had i t ? MC: ( laughs) F F : Yeah we l l look a t . . l o o k at him. u h . . . u h . . . s u f f e r i n g so much, you know what I mean. MC: Oh no. T h a t ' s n o t . . . FF : I t sounds s t u p i d I know. MC: . . . n o t tha t bad. F F : But anyway. . . MC: Oh no. Not tha t bad. I d i d n ' t say you were s t u p i d , I s a i d i t ' s not t ha t bad. Thus, wh i le f a m i l i e s desc r ibed emotional r e a c t i o n s as a component of t h e i r exper ience w i th c a n c e r , t h e i r pe rcep t ions dur ing the t ime at which accounts were cons t ruc ted were tha t emotional tu rmoi l was not c h a r a c t e r i s t i c of t h e i r everday l i v e s w i th cance r . FC: And as I s a y , we have a p re t t y good l i f e , don ' t we? FF : Yes we do. Very good. Impact on r o l e s Temporary or permanent r o l e s h i f t s occur red i n a l l of the f a m i l i e s . For four of the cancer p a t i e n t s , the fam i l y r o l e p r i o r to the onset o f cancer had been tha t of wage ea rne r . At the t ime of i n t e r v i e w , on ly two had mainta ined tha t r o l e , and both of these had been temporary absences from work as par t of t h e i r cancer expe r i ence . The usual f am i l y r o l e of the remaining four cancer p a t i e n t s had been tha t o f so le or shared homemaker. Most of the family members had maintained t h e i r prior roles throughout the cancer experience, with the exception of one who terminated employment to become a f i r s t - t i m e homemaker, and one who became a wage-earner for the f i r s t time. The experiences of role l o s s , role modification, role gain, and role retention were described by various families. Where family roles were l o s t by the member with cancer, physical d i s a b i l i t i e s related to the cancer accounted for those losses. MF: I mean there...there are things that...that my wife...er... wife i s incapable of doing now that she was able to do before. FC: Well I can't do what I used to do. R: mm hmm. FC: Is that what you mean? I can't accomplish what I used to. Like I've got i t in the back and in the uh...hips. So I... automatically there goes the housework. Several patients perceived such role losses as temporary rather than permanent changes. FC: Things I would l i k e to have done and haven't done in the past would be to wash the kitchen walls a l l out there the once a year. They haven't been done for two years. We'll get i t done. R: mm hmm. FC: We'll slowly do i t . MC: I would l i k e to be doing more volunteer work, but uh...I f i n d that I get...with a l l the noise and confusion i t just makes me t i r e d . So it's...no sense me doing i t . I ' l l get back to i t , you know, very shortly. I ' l l s t a r t going back to i t . While not a l l p a t i e n t s had exper ienced major r o l e l o s s e s , a l l had been requ i red to make some m o d i f i c a t i o n s i n t h e i r usual r o l e f unc t i ons as a r e s u l t o f having cance r . F F : So I 've been keeping house, and [ s h e ' s ] been work ing . FC: R i g h t . F F : S o . . . w h i c h worked out f i n e f o r both of u s . And of course u h . . . u h I 've t r i e d to make sure she d i d n ' t have to do any bend ing , or anyth ing tha t s h e . . . . FC: S p o i l e d r o t t e n . . . u h . . . i n o ther words ( c h u c k l e ) . In order to ensure t ha t the t asks a s s o c i a t e d w i th t h e i r r o l e s were being c a r r i e d ou t , some of the p a t i e n t s r e l i e d upon ex te rna l s e r v i c e s they p r e v i o u s l y would not have used. MC: I'm going to have a c o n t r a c t o r come i n . . . p u t the cement i n . I used to d o . . . I ' v e done a l l my own cement work around h e r e . But when you s t a r t t u rn i ng s i x t y , you s t a r t throwing cement around, you know. The re ' s qu i t e a b i t . F F : P lus you haven ' t got the s t reng th anymore. MC: Yeah. And u h . . . y o u have to face up to the f a c t whe re . . . i t ' 11 cos t you say $700 to do i t y o u r s e l f , i t ' s gonna cos t you $1500. But you c a n ' t do i t y o u r s e l f , o r y o u ' r e not gonna get i t done. FC: He 's been g r e a t , you know, t o . . . t h a t i s a b ig worry o f f my . . mind. I l i k e to have my house n i c e . . . a n d t i d y . I t was b e f o r e , and i t ' s been now, you know, and i t ' s a . . . t h a t ' s a b i g worry o f f . R: So the homemaker. . . . FC: . . . t o have them coming. Yes . R: That makes a d i f f e r e n c e to y o u . FC: Oh y e s . T h a t ' s a great program f o r . . . y o u know, l i k e . . . m e n don ' t no t i ce i t . My husband c o u l d n ' t care l e s s i f the rug gets vacuumed or the d u s t i n g ' s done. But I n o t i c e i t . Where the f a m i l i e s found themselves unable to ca r r y out p rev ious t a s k s , they were o f ten fo rced to a l t e r t h e i r e x p e c t a t i o n s . R: Does tha t worry y o u , or do you j u s t f o rge t about the yard? MF: No, I d o n ' t bother be ing upse t . FC: Yeah. I don ' t l i k e t ha t crap a l l over the ya rd ( l augh ) . My sons s a i d they would come and do i t . . . l i k e , you know. But t h e y . . . t h e y ' v e got l o t s . . . t h e y ' v e got a c h i l d . . . t w o of them. . .and t hey ' ve got to look a f t e r t h e i r house. R: mm hmm. FC: So they haven ' t got ten around to i t . So you c a n ' t . ..1 asked once, and i f . . . i f they c a n ' t , they c a n ' t . T h a t ' s a l l . Severa l of the cancer p a t i e n t s desc r ibed m o d i f i c a t i o n s they had made i n the way they accompl ished t h e i r p rev ious r o l e s . R: Have you had to g ive up doing th ings around the house tha t you used to do, and o ther th ings f o r y o u r s e l f ? FC: Not r e a l l y . I can s t i l l do my housework. R: You can . FC: mm hmm. Only i f I get t i r e d then I q u i t , you know. I d o n ' t f o rce mysel f to do too much. L i ke i f I f ee l n i ce today I do a l o t and tomorrow I might not f e e l r i g h t . Forget the housework. R: mm hmm. FC: T h a t ' s the way to do i t . No use f o r c i n g y o u r s e l f . Whi le some f a m i l i e s expressed such m o d i f i c a t i o n s as minor ad jus tments , o thers desc r ibed a process of r e - l e a r n i n g a s s o c i a t e d wi th the changes i n p rev ious c a p a c i t i e s . FC: And you know when y o u ' r e a . . . a very independent p e r s o n . . . a n d uh. . .we were s o r t of r a i s e d i n the o l d school where i f you want something done, do i t y o u r s e l f , you know. R: Yeah. 48 FC: So , you j u s t s o r t of automat ic go to these t h i n g s . So I had to u h . . . s o r t of r e - l e a r n tha t u h . . . u h . . . y o u k n o w . . . t h e r e ' s a t ime and a p lace f o r eve ry th ing now tha t u h . . . y o u j u s t stop and t h i n k , "Well n o . . . u h . . . I be t t e r not do t h a t . " So you get somebody e l s e to do i t , but i t ' s . . . i t ' s . . . i t ' s aga ins t my whole nature r e a l l y . R: mm hmm. FC: But u h . . . y o u l e a r n . You l e a r n and uh . . . pe rhaps you get a b i t more s e l f - c e n t r e d , I don ' t know. In one f a m i l y , the par tners had swi tched r o l e s from the ones they had f u l f i l l e d p r i o r to l i v i n g w i th cance r . The r e - l e a r n i n g assoc i a t ed w i th the pe rcep t ion of l o s s of former c a p a c i t y was expressed w i th a s i m i l a r tone of r e g r e t f u l accep tance . MC: So now I'm home everyday and I'm doing the housework and I'm doing the grocery shopping (chuck le ) a n d . . . . F F : And I'm t r a v e l l i n g up and down the v a l l e y ( c h u c k l e ) . We've reversed r o l e s . MC: We've j u s t reversed r o l e s , so tha t i s d e f i n i t e l y . . . y o u know. But I...I have no problem accep t ing i t . I don ' t reg re t t h i s , but again t h a t ' s my makeup. I'm calm and u h . . . t o me to s i t and read a book or go f o r a walk i n the park or go f o r a b i ke r i d e i s g rea t ! I t on ly bothers me the f a c t tha t wh i l e I'm l o a f i n g around, t h i s l a d y ' s d r i v i n g a l l over the coun t r y . And tha t bothers me 'cause I should be doing i t , not he r . But t h i s i s the way the r o l e s had to be reversed and t h e r e ' s noth ing we can do about i t , so we have to accept i t and go a long w i th i t . But i t does change your l i f e , t h a t ' s f o r su re . Thus, a l though f a m i l i e s d i d not desc r i be major d i s r u p t i o n s r e s u l t i n g from a l t e r a t i o n s i n t h e i r usual r o l e a l l o c a t i o n s , where changes or m o d i f i c a t i o n s were pe rce ived as l o s s e s from former c a p a c i t i e s , they were expressed as unwelcome changes. Role g a i n s , on the o ther hand, were desc r i bed by these f a m i l i e s as more p o s i t i v e expe r i ences . None of the husbands who had acqu i red homemaking du t i es as a r e s u l t of the w i f e ' s i n c a p a c i t i e s from cancer desc r i bed t h i s as a d i f f i c u l t change. FC: Well I 've lea rned about my husband m o r e . . . l i k e uh . . .wha t a s t rong person he r e a l l y i s . MF: Good cook and b o t t l e washer ( l a u g h ) . FC: Oh s u r e . Not much of a cook ( l a u g h ) . FC: Oh y e s . My husband's been wonder fu l . H e ' s . . . h e ' s j u s t been so h e l p f u l , and he never had to keep i n the house b e f o r e . . . i n h i s l i f e . His mother was a c t i v e enough and he never had to do anyth ing and now he has t o . T h a t ' s a l l there i s to i t . R: Well how's t ha t changed f o r you t h e n . . . h a v i n g to take on e x t r a jobs tha t you d i d n ' t have before? MF: Oh. . .wrecks my l e i s u r e t ime ( l a u g h ) . Oh no. Don' t bother me a t a l l . I t ' s something we got to contend w i t h , so Severa l male cancer p a t i e n t s had a l s o acqu i red household r e s p o n s i b i l i t i e s as a r e s u l t of t h e i r i l l n e s s . These r o l e a c q u i s i t i o n s were desc r ibed as n e i t h e r unpleasant nor d i s r u p t i v e . R: Well how have y o u r . . . h a v e your a c t i v i t i e s changed or t he . . .who does what around the house? Have these changed a l o t s i nce you got cancer? MC: Well I...I do qu i t e a b i t , l i k e she s a i d . I do qu i t e a b i t o f cook ing . I t keeps me occup ied . I t keeps me out o f her h e e l s . She does o ther t h i n g s . She washes the d i s h e s , I do the cook ing . FF : He does a l l the grocery shopping and eve ry th ing because u m . . . . MC: And the house . . . you know, the housework and so on . I d o n ' t mind doing i t a t a l l . I t ' c g r e a t . And i t keeps me busy. The va lue of such household r o l e a c q u i s i t i o n s was desc r i bed as tha t of p rov i d i ng a sense of accomplishment and he lp ing the p a t i e n t s avo id p re -occupa t ion w i th t h e i r i l l n e s s . FF : I get you to do th ings tha t u h . . . y o u know. . .go out and get t h i n g s . L i ke going shopp ing. R: mm hmm. F F : Or he can do the cook ing . MC: Well u h . . . . FF : You s e e . . . ' c o u r s e i t ' s not l i k e I'm l a z y . I cou ld do the cook ing but then h e . . . i t keeps i t o f f h i s mind. MC: Occupied. Occupat ion u h . . . d o i n g something. F F : Get some th ing . . . ge t something done, you know. Severa l f a m i l i e s a l s o desc r ibed r o l e s t ha t had been re ta i ned i n s p i t e of c a n c e r . The maintenance of p r i o r r o l e s was va lued by these f a m i l i e s . R: Have you changed who does what around the house a n d . . . u h . . . t h e way you ca r r y out your normal everyday a c t i v i t i e s ? MC: No. I s t i l l wash the d i s h e s . F F : (chuck le) And cook. R: She keeps you busy. MC: And I cook, y e a h . F F : Sure I keep him busy! F F : He 's got to do h i s share of the work. R: Yeah? F F : Tha t ' s r i g h t . He 's not c r i p p l e d . Oh no. R: You ' re not going to l e t him s lack o f f , eh? F F : No way. He 's not going to s l ack o f f . T h a t ' s h i s job every Monday morn ing . . . go downsta i rs and do the wash. And he vacuums. He 's a good cook. Oh y e a h , h e ' s a rea l good cook. F a m i l i e s a l s o seemed to va lue r o l e r e t e n t i o n by t h e i r non -cance r -pa t i en t members. R: Were you tempted to g ive up some of those th ings tha t you do when your husband got i l l ? F F : No way. No. MC: I don ' t want her around here ! Thus, al though a l l of the p a r t i c i p a n t f a m i l i e s descr ibed r o l e s and r o l e changes as s i g n i f i c a n t w i t h i n the con tex t of t h e i r everyday l i v e s , none c la imed to have exper ienced major d i s r u p t i o n w i th regard to r o l e s . Wi th in the process of r e - s h u f f l i n g , r o l e ga ins and r o l e r e ten t i ons were used by many of the f a m i l i e s to coun te rac t the d iscomfor t a s s o c i a t e d w i th r o l e l o s s e s . Where r o l e s cou ld be r e ta i ned w i th the use of m o d i f i c a t i o n , f a m i l i e s desc r ibed them wi th a measure of p r i d e . Role l o s s e s were exper ienced as minor inconveniences when the f a m i l i e s expected such l o s s e s to be of a temporary na tu re . I t seemed apparent from the accounts o f these f a m i l i e s tha t pe rce ived r o l e l o s s was a s i g n i f i c a n t l y more d i f f i c u l t aspect of the exper ience than was any o ther form of r o l e r e o r g a n i z a t i o n . Impact on communication The p a r t i c i p a n t f a m i l i e s a l l addressed the i s sue of whether or not to t e l l f r i e n d s and acquaintances t ha t one of t h e i r members was l i v i n g w i th c a n c e r . Most f a m i l i e s had chosen to in form those w i t h i n t h e i r usual s o c i a l networks. R: Have you t a l k e d to people about your husband's i l l n e s s ? F F : Oh y e s . Oh y e s . R: T h a t ' s something tha t you can t a l k about? FF : My f r i e n d s a l l t a l k about i t . Oh y e s . A l l my f r i e n d s , they know about i t . A l l the f a m i l i e s b e l i e v e d tha t t h e i r f r i e n d s and acquaintances were aware of the c a n c e r , whether they had informed them d i r e c t l y or no t . The knowledge tha t o thers were aware of the d i agnos i s d id not n e c e s s a r i l y mean t h a t the sub jec t was t a l k e d about open ly . MC: Only two people I 've t o l d tha t I have cance r . R: mm hmm. MC: Nobody e l s e . My w i f e t o l d everybody e l s e ( c h u c k l e ) . F F : No. Not t r u e . But our c l o s e f r i e n d s know i t . They come and drop i n the same as they ever d i d b e f o r e . MC: Oh yeah we l l o u r . . . o u r daughter knows i t and every th ing l i k e t h a t , you know, b u t . . . . R: mm hmm. So people know about i t but you don ' t um.. .go out of your way to t a l k about i t . Is t ha t what y o u ' r e say ing? MC: No way! I never d i scuss i t . R: You d o n ' t . MC: No. Not w i th anybody. One man desc r ibed h i s op in ion of why f a m i l i e s l i v i n g w i th cancer might p r e f e r not to d i scuss i t w i th people ou ts ide the f a m i l y . MC: But w e . . . d i d f i n d tha t people don ' t l i k e to t a l k about i t . The re ' s a l o t o f people keep w i t h i n themselves and they do not l i k e to t a l k about i t and t h e y ' r e qu i t e wor r ied about i t . R: These are people tha t have cancer and don ' t t a l k about i t ? MC: They are people tha t h a v e . . . y e a h , tha t have c a n c e r , yeah , we had one i n he re . The f am i l y d i d n ' t care too much to t a l k about i t because they f i g u r e d tha t he w a s . . . y o u know, bad enough tha t he had i t . R: So wha t ' s . . .why do you th ink people don ' t want to t a l k about i t ? MC: Fea r . The b igges t f a c t o r i s f e a r i n peop le . Several f a m i l i e s desc r ibed untoward r e a c t i o n s from other people as a f a c t o r tha t i n h i b i t e d them from d i s c u s s i n g cance r . R: How do people i n the b u i l d i n g reac t when you t e l l them you have cancer? MC: Oh.. .some of them look a t you w i th a long f a c e , bu t , I mean, you meet a l l k i n d s . See I'm used to a l l k i n d s . I 've had 'em from the top u p . . . t h e bottom down. R: Do you f i n d tha t you t a l k w i th f r i e n d s or f am i l y or o ther people about your cancer very o f ten? FC: U h . . . n o . I don ' t th ink they l i k e to l i s t e n . F F : I don ' t mind. FC: Yeah. Yeah, we l l j u s t w i th her but not w i th f r i e n d s . R: mm hmm. But w i th your [ f am i l y member] you can t a l k about i t . FC: Yeah. We t a l k , y e a h . F r i ends I don ' t r e a l l y t a l k to them. They f e e l so r r y f o r y o u . At t i m e s , these untoward r e a c t i o n s were not merely unsympathetic but were pe rce ived as a l i e n a t i n g e x p e r i e n c e s . MC: I th ink the b igges t problem you f i n d when y o u ' r e t a l k i n g to people i s tha t cancer i s such a word t ha t i t scares everyone. And I 've had t h i s happen to m e . . . I ' v e t o l d many people about i t . I t ' s amazing when you stand t a l k i n g to somebody and i n the course of the conversa t i on i t comes out t ha t you have c a n c e r . . . i t ' s a m a z i n g . . . w i t h i n a matter o f a second, t h e y ' l l take a step away from y o u . I t ' s j u s t u n b e l i e v a b l e . And i t ' s only because I th ink i n the back of t h e i r mind, i t ' l l jump to them, (chuck le) I don ' t know why. I t ' s the on ly t h i ng I can t h i n k . FC: I ' v e . . . I ' v e t o l d . . . I went to my o l d d e n t i s t , l i k e , to have my p l a t e f i x e d . And h e ' s an o l d e r f e l l o w . He must be c l o s e to e i g h t y . And he has hear t t r o u b l e . And o h . . . I thought to t e l l him wou ldn ' t mean anyth ing to h im, you know, being an o l d e r f e l l o w . . . t h e y don ' t seem to reac t the same. And u h . . . s o I thought , "No , I ' l l wa i t t i l l h e ' s f i n i s h e d the job and then I ' l l t e l l h im . " L i k e , I'm l imp ing now. . .we l l before I never l imped and he was s o r t of l o o k i n g a t me and he never s a i d any th i ng . But um.. .anyway, I t o l d him u h . . . t h e l a s t appointment, I t o l d h im. And you know he j u s t about threw my tee th at me and d isappeared out o f the room. The percep t ion tha t some people might r eac t to the cancer i n a negat ive f ash ion was expressed as a concern by most of the f a m i l i e s . F F : I don ' t know who...who should be communicating um. . .whether , you know, I should be communicating o r . . . w i t h people and s a y , "Look , " You know. Maybe i t should be tha t way. Maybe I should be s a y i n g , "Would you l i k e to come over f o r co f fee w i th us?" you know, so tha t they r e a l i z e tha t [ h e ' s ] qu i t e capable to get out and go ou t . Maybe perhaps peop le , not knowing what 's going on . Maybe t h a t ' s pa r t of the problem wi th u h . . . y o u know, as f a r as f r i e n d s and acquaintances are concerned. In s p i t e of the perce ived r i s k s inheren t i n openly d i s c u s s i n g the presence o f cancer i n t h e i r f a m i l y , most o f the p a r t i c i p a n t f a m i l i e s had done s o . R: So i t sounds l i k e y o u ' r e not only w i l l i n g to t a l k w i th a l l your f am i l y about i t , but you would r e a l l y ra the r everybody d i d t a l k about i t open l y . MC: Yeah. F F : Oh yeah . I t o l d the l a d i e s up a t the chu rch . FC: I don ' t th ink i t ' s uh . . . someth ing you have to sweep under the r u g . I t ' s he re . They ' re making g rea t s t r i d e s i n i t . And I th ink u h . . . t h e more people know about i t , the be t t e r i t ' s going to be f o r everyone. Al though such d i s c u s s i o n s were o f ten desc r i bed as d i f f i c u l t e x p e r i e n c e s , the f a m i l i e s pe rce ived them as u l t i m a t e l y b e n e f i c i a l . MC: You've soon found out who your f r i e n d s r e a l l y were and thought something of y o u . MF: So then by l i k e t a l k i n g to people about i t and l i k e you f i n d out tha t t h e r e ' s a l o t of people t ha t have been helped by i t . R: mm hmm. MF: Or have been helped to overcome i t . They l i v e , l i k e , a normal l i f e . Whi le most o f the f a m i l i e s found i t h e l p f u l to have t h e i r f r i e n d s and acquaintances aware of the s i t u a t i o n they had encountered, and many d i scussed the cancer exper ience openly i n t h e i r s o c i a l w o r l d s , there seemed to be a natura l l i m i t to the b e n e f i t of such d i s c u s s i o n s . With the urgency of the t e l l i n g process comple ted, severa l f a m i l i e s expressed the d e s i r e to move on to o ther s u b j e c t s . F F : I knew we had to do i t to s t a r t w i t h . You might as we l l get i t over w i th 'cause they want to know. A f t e r t h a t , you know, I 'd r a the r s i t down and p lay card games. The p leasure a s s o c i a t e d w i th t a l k i n g about something o ther than h i s cancer was desc r ibed by one of the p a t i e n t s . MC: We never t a l k e d about me a t a l l . We t a l k e d about him and h i s h ip replacement and a l l t h a t . I t o l d [my w i f e ] , "Boy i s i t n i ce to go and v i s i t somebody and you don ' t have to spend 20 minutes e x p l a i n i n g how you f e e l . " I r e a l l y f e l t good about t h a t . C l e a r l y , dec id i ng who to in form about the c a n c e r , and how cancer d i s c u s s i o n s should be managed, was a common theme expressed by the p a r t i c i p a n t f a m i l i e s . A second theme tha t emerged i n r e l a t i o n to t h e i r s o c i a l networks was tha t of hear ing o t h e r s ' s t o r i e s about cance r . Al though some of these cancer s t o r i e s r e f l e c t e d the exper ience of people who were known to the f a m i l i e s , many were about people the f a m i l i e s had never met. As the s t o r i e s themselves were passed on to the r e s e a r c h e r , they were f requen t l y p re faced w i th an exp lana t i on of t h e i r o r i g i n . MC: My s i s t e r . . . s h e had a f r i e n d . . . h e r daughter got cancer t o o . A l l the p a r t i c i p a n t f a m i l i e s t o l d the s t o r i e s of severa l o ther p e o p l e ' s cancer exper iences dur ing the process of c o n s t r u c t i n g t h e i r own accoun ts . Many of the stories they retold had been passed on to them by friends and acquaintances during the process of informing t h e i r social worlds that they were now l i v i n g with cancer. Such stories were generally described as being negative in nature. FC: Everyone...because of ignorance...everyone knows somebody who knows somebody, and they a l l had an awful experience. FF: "Oh I have a friend," and off they go and i t ' s always the gruesome d e t a i l s . While families did not interpret such stories as factual representation of r e a l i t y , they did describe a process of continually comparing the stories to t h e i r own experience. FC: But you know when I hear of other people...I actually have not been with somebody that has been uh...violently i l l after the chemo. That's what I was saying to you earlier...the l a s t interview. You...everybody knows somebody who knows somebody etcetera. R: mm hmm. FC: But uh...I have not personally been with a cancer uh...patient that has been i l l after chemo. I've only heard of them. Several families talked of evolving past the point of being w i l l i n g to l i s t e n to the stories. FF: Well just mention chemotherapy. Just say chemotherapy and right away they are going to t e l l me a l l the terrible...they had a friend and she l o s t her fingernails and oh! And I j u s t , you know, I j u s t say, "Ok. Um... 1111 cross that bridge when we come to i t . I just don't want to hear that sort of thing." But I think that i s being very inse n s i t i v e . MC: I'm feeling good. I'm looking good. That's what I want to talk about. I don't want to talk about your Aunt Suzie that, you know, her hair f e l l out and her arms f e l l off and her legs f e l l o f f , right? I don't want to hear a l l that nonsense. You know I don't want to dwell on that. MC: They d o n ' t r e a l i z e tha t t h a t ' s not the k ind of t h ing a person t h a t ' s got a problem needs to hea r , you know. I f somebody's got some k i n d of d i sease o r . . . " O h we l l I had a f r i e n d who had the same t h i n g . " You don ' t r e a l l y need t h a t . A l though most o f the f a m i l i e s pe rce ived themselves to have been bombarded w i th predominant ly negat ive s t o r i e s , one p a r t i c i p a n t repor ted tha t l i s t e n i n g to the s t o r i e s had a l s o y i e l d e d o p t i m i s t i c rewards. MF: Hey, how can I put t h i s ? L i k e the s t o r i e s tha t you do hear when l i k e nobody i n your f am i l y has cancer are the ones tha t are the bad ones. R: mm hmm. MF: L i ke people who have cancer and they s u f f e r through i t . . . t h e whole t h i n g . . . a n d then e v e n t u a l l y j u s t d i e . R: mm hmm. MF: But when somebody has i t , then you f i n d there are a l o t of people t h a t . . . e v e n f r i e n d s . . . w h o have i t o r somebody i n t h e i r f am i l y has i t . . . a n d t h e y ' r e doing f i n e . In g e n e r a l , the f a m i l i e s in t h i s study desc r ibed the s t o r y t e l l i n g of o thers as a common exper ience i n t h e i r everyday l i v e s . The potency of these s t o r i e s was r e f l e c t e d i n the frequency w i th which they r e t o l d them to the researcher i n the course of d e s c r i b i n g t h e i r own expe r i ences . Communication i n r e l a t i o n to cancer occur red not on ly w i th f r i e n d s and acqua in tances , but a l s o w i t h i n f a m i l i e s themselves. Some f a m i l i e s pe rce i ved tha t the p h y s i c a l symptoms a s s o c i a t e d w i th cancer and i t s t reatment c rea ted some d i s r u p t i o n i n t h e i r usual communication p a t t e r n s . MC: I f you c o n s t a n t l y f ee l groggy and dragged down and t i r e d , y o u ' r e i r r i t a t e d or y o u ' r e u h . . . u n s t e a d y , we l l y o u ' r e l i a b l e to say th ings you d o n ' t mean to say l i k e hur t u h . . . o f f e n d each o t h e r . R: mm hmm. MC: Unknowing tha t you ' ve doing i t even and not r e a l i z i n g tha t y o u ' r e doing i t u n t i l a f t e r i t ' s done. R: mm hmm. MC: And i t ' s not something tha t you mean to do but i t ' s j u s t tha t your hea l th i s n ' t up to par and you d o n ' t r e a l i z e u n t i l a f t e r you ' ve done i t t ha t you s h o u l d n ' t have s a i d what you done or you s h o u l d n ' t have done what you done. F a m i l i e s a l s o desc r ibed va r i ous means of communicating when a member was f e e l i n g p a r t i c u l a r l y depressed. R: What do you do when you get down i n the dumps. . .o r does tha t ever happen? FC: Oh y e s . I t happens. Oh I . . .my o l d f e l l o w ' s good there ( l augh ) . He 's very h e l p f u l . R: What does he do? MF: Who me? Young f e l l ow? ( laugh) R: Yeah. Th i s young person . FC: Yeah. R: What does he do t h a t . . . t h a t he lps i n t ha t s i t u a t i o n ? MF: Oh . . . comfo r t he r . FC: Yeah, h e ' s very k i n d . R: So do you have to work to help [w i fe ] s tay not depressed? F F : ( laughs) MC: Oh I do. I do. I s a y , "Oh you a i n ' t gonna put me i n a p ine box. I'm gonna s t i c k around and g ive you a bad t ime t o o . " F F : ( laughs) MC: Oh yeah . You ask her i f I a i n ' t got a sense of humor. You ask he r . F F : I know t h a t . MC: She wor r ies but I d o n ' t . I don ' t l e t her worry . R: Well s i nce y o u . . . y o u ' v e had your i l l n e s s , have there been any t imes w i t h i n t h a t . . . l i k e the t ime tha t i t was d iagnosed, or t imes of t r e a t m e n t . . . t h a t have been p a r t i c u l a r l y upse t t i ng or d i s r u p t i v e to your f am i l y l i f e ? FC: Oh, t ime I say th inns and then get c o r r e c t e d , (pause) Not c o r r e c t e d . J u s t po in ted out t h a t . . . t h e r e ' s noth ing wrong, don ' t worry about i t , e v e r y t h i n g ' s a l l r i g h t . R: So you ' ve k ind of got down i n the dumps sometimes and FC: J u s t a l i t t l e b i t . Nothing r e a l l y . MF: She b e t t e r not get down i n the dumps, 'cause we ' re gonna beat t h i s . She ' s gonna l i v e . . . w e're both gonna l i v e a long t ime . R: So your job i s to make sure her a t t i t u d e s tays p o s i t i v e . Is tha t r i g h t ? MF: A b s o l u t e l y . The f a m i l i e s v a r i e d cons ide rab l y i n the s t y l e w i th which they chose to communicate or not communicate the emotions they exper ienced i n r e l a t i o n to the presence of cance r . Ha l f of the f a m i l i e s i n d i c a t e d tha t they d i d not openly communicate t h e i r sadness or worry w i th each o t h e r . MC: My uh. . .my on ly concern i s my w i f e . T h a t ' s my only concern . R: Your conce rn ' s your w i f e . MC: Yes . R: mm hmm. MC: Not w i th myse l f . R: mm hmm. MC: And her concern i s me. . I b e l i e v e . But you can t e l l her what your concern i s . F F : Well t h a t ' s i t , but I don ' t show i t . R: mm hmm. F F : I keep tha t to myse l f . F a m i l i e s who d id not tend to express t h e i r emotions openly i n t h e i r everyday l i v e s behaved acco rd i ng l y i n the research i n t e r v i ew con tex t . In two i n s t a n c e s , however, a fam i l y member l e f t a lone w i th the researcher f o r a few minutes acknowledged an awareness of the p a r t n e r ' s f e e l i n g s , which had not been openly communicated. MF: A wh i le back you were ask ing about mother b reak ing down, eh? W e l l , s h e ' s more or l e s s kept t ha t to h e r s e l f t o o . R: Adn t h a t ' s . . . t h a t ' s her way of doing i t . MF: Yeah. I caught her a couple o f t i m e s . How o f ten i t ' s happened I don ' t know. F F : I know i f I'm c r y i n g o r . . . i n s i d e . . . 1 never show i t to h im. I do tha t p r i v a t e l y . R: You do tha t p r i v a t e l y . F F : Yeah. And I th ink he does t o o . R: mm hmm. F F : Yeah. R: Kind of an unspoken agreement? F F : Yeah. Yeah. J u s t something t ha t we don ' t show. These p r i v a t e " c o n f e s s i o n s " to the researcher seemed i n d i c a t i v e of two phenomena: f i r s t l y , t ha t the need to por t ray the exper ience accu ra te l y was g rea te r than the need to ma in ta in fam i l y s e c r e t s ; and second ly , t ha t the cancer exper ience as a r t i c u l a t e d by fam i l y groups might we l l d i f f e r from tha t a r t i c u l a t e d by the i n d i v i d u a l members s e p a r a t e l y . F a m i l i e s who desc r ibed themselves as be ing open i n t h e i r communication of f e e l i n g s perce ived t h i s as an advantage. As one fam i l y member d e c l a r e d , "I th ink i t ' s brought us a l i t t l e c l o s e r . " One p a t i e n t desc r ibed r e a l i z i n g the importance of t h i s openness when a sec re t he had he ld produced fami l y c o n f l i c t . MC: So I d i d n ' t t e l l h e r , and s o . . . a n d then I l ea rned my l e s s o n . From now o n , I t e l l her eve ry th ing no matter how bad or how good, I t e l l her anyway. Severa l of the f a m i l i e s expressed the op in ion tha t shar ing i n fo rma t ion w i t h i n f a m i l i e s was a l s o an important communication i s s u e . MC: I don ' t b e l i e v e i n h i d i n g any th ing from them. I f the doctor t e l l s me I 've go t , you know, s i x months to go, then I ' l l t e l l my k i d s . Cause I th ink i t ' s important tha t they know. I t ' d be much e a s i e r to handle than i t i s i f a l l of a sudden you s a y , "Oh hey, I'm rea l g r e a t , " and then tomorrow i t happens y o u ' r e gone. T h a t ' s too hard on peop le . R: Secre ts are a r e a l l y b i g p r e s s u r e , a r e n ' t they . FF : Oh y e s . MC: T h a t ' s r i g h t . T h a t ' s r i g h t . And as I say , I don ' t th ink t h e r e ' s any need f o r i t . I th ink you should be open. R: So i t sounds l i k e the openness about cancer and t reatments has gone r i g h t down to the g r a n d c h i l d r e n . MC: Oh y e a h . Yeah. Oh they w e r e . . . t h e y weren ' t t o l d t ha t I may d ie or anyth ing l i k e t h a t . That grandpa was very s i c k and the doctors had to do t h i s and had to do t h a t , and th ings l i k e t h i s , you know. And u h . . . g r a n d p a ' s gonna have some t reatments and h e ' s gonna l o s e h i s h a i r . Thus the f a m i l i e s d i f f e r e d from each o ther i n the communication s t y l e they used i n r e l a t i o n to the cancer and i t s emotional impact . D i s c u s s i n g cancer w i t h i n the f am i l y was not n e c e s s a r i l y v a l u e d . One fam i l y exp la ined t ha t the use fu lness of t a l k i n g about c a n c e r - r e l a t e d i s sues had d im in ished over t ime and had been surpassed i n importance by the need to focus upon o ther aspects of t h e i r l i f e . MC: I th ink most of the t ime we ever t a l k about i t i s when I go f o r my t reatment and I j u s t s a y , "Hey . " F F : I t r e a l l y i s , i s n ' t i t . I want to know what happened, a n d . . . MC: You know. . . they boosted my shot aga in t h i s week and the good w i fe s a y s , "Uh oh . Tomorrow y o u ' r e going to be tw ice as s l e e p y , " and I s a y , " Y e p . " But very seldom e l s e do we t a l k about i t , un less we have company over and they want to know what ' s going on . Most of the f a m i l i e s who. p a r t i c i p a t e d i n t h i s study d i d not pe rce ive cancer to have had any major impact upon t h e i r usual communication pa t te rns w i t h i n the f a m i l y . F F : I t won ' t be a d r a s t i c change, b e l i e v e me. I f you don ' t get a long w i th somebody e l s e before y o u ' r e s i c k and a l l of a sudden y o u ' r e s i c k , how are they going to get a long w i th you? FC: mm hmm. They d i d , however, desc r i be i n c i d e n t s sugges t i ve of some communication changes w i th the f a m i l y . R: So do you th ink making up w i th your b ro ther had anyth ing to do w i th your i l l n e s s ? Do you th ink you ' ve changed toward him i n any way? MC: Well I look a t i t t h i s way. The re ' s no use ho ld ing a grudge a l l our l i f e . FC: The c h i l d r e n have made no d i f f e r e n c e whatsoever . They s t i l l . . . l i k e I th ink I would be d i f f e r e n t i f i t were my c h i l d . I don ' t th ink I would have i t k i s s grandma. L i k e I 'd t e l l . . . t e a c h my c h i l d don ' t k i s s her on the mouth o r . . . y o u know.. .where i t ' s me tha t makes sure tha t my g randch i l d ren don ' t k i s s me on the mouth anymore. L i k e . . . j u s t . . . 1 t u rn my face and then I k i s s them on the forehead o r . . . y o u know. R: mm hmm. FC: But t he . . .my own c h i l d r e n have not i n s t r u c t e d t h e i r g r a n d c h i l d r e n . . . t h e i r c h i l d r e n to be any d i f f e r e n t . R: mm hmm. FC: But u h . . . I... I imagine t h e y ' r e g lad when they see tha t I d o n ' t . . . y o u know. You ' re always a f r a i d . You c a n ' t help wondering i f i t can be t r a n s m i t t e d . . . t r a n s f e r r e d , eh? I t appears , t h e r e f o r e , tha t the presence of cancer i n a fam i l y member had an impact upon the f a m i l y ' s communication i n a v a r i e t y of ways. Dec i s i ons regard ing who to t e l l , what to t e l l , and how to t e l l con f ron ted a l l o f the p a r t i c i p a n t f a m i l i e s . Once f r i e n d s and acquaintances were informed of the presence of c a n c e r , the f a m i l i e s were t r e a t e d to a barrage of cancer s t o r i e s , most o f which were unpleasant and d i s t r e s s i n g . F i n a l l y , f a m i l i e s had to communicate, o v e r t l y or c o v e r t l y , i n fo rmat ion and f e e l i n g s between t h e i r members. Impact on ph i losophy A l l of the f a m i l i e s who p a r t i c i p a t e d i n t h i s study were aware tha t the d iagnos i s of t h e i r i l l member was c a n c e r , and tha t cancer i s a l i f e - t h r e a t e n i n g i l l n e s s . Most of the i n d i v i d u a l s w i th cancer had a m e t a s t a t i c form of t ha t d i s e a s e . Al though none were expec t ing imminent death a t the t ime of the s tudy , and the prognoses they had been g iven were v a r i e d , none were expec t ing a complete cure e i t h e r . In f a c t , two of the cancer p a t i e n t s d ied w i t h i n three months of t h e i r p a r t i c i p a t i o n i n the i n t e r v i e w s . A common theme i n the exper ience of these f a m i l i e s was tha t of sea rch ing f o r reasons why cancer had s t ruck i n t h e i r m ids t . Severa l f a m i l i e s descr ibed the f e e l i n g of un fa i r ness tha t t h e i r member had been a f f l i c t e d wh i le people who made no s o c i a l c o n t r i b u t i o n were spared . FC: You say to y o u r s e l f , you haven ' t k i l l e d anybody, you haven ' t k i l l e d ten c h i l d r e n . . . y o u haven ' t k i l l e d s i x peop le , burned them u p . . . y o u haven ' t stabbed anybody. And you spent hours and hours of l a b o r i n g to help o ther p e o p l e . . . I cou ld name you d i f f e r e n t o c c a s i o n s , but I won ' t go i n t o i t . I say to m y s e l f , "Why?" You know, you c a n ' t he lp i t . R: Do you say i t out loud o r . . . . ? FC: Oh the odd t ime . MF: Oh she gets a l i t t l e b i t upset sometimes and I t e l l her I know why she gets upset because of how much help s h e ' s g iven to peop le , or how much he lp we've g iven to peop le . FC: R i g h t . MF: And uh FC: Why should I get t h i s ? MF: Then we look a t . . . . FC: Other people don ' t do anyth ing f o r anybody. MF: No, and then we look a t o ther people tha t are murderers and what have y o u , and rape a r t i s t s a n d . . . . R: mm hmm. MF: . . . c h i l d mo les te rs and eve ry th ing e l s e , and then we say to o u r s e l v e s , "Wel l why doesn ' t t h i s happen to people l i k e t h a t ? " R: mm hmm. MF: I mean we ask ou rse l ves tha t q u e s t i o n . F F : I c a n ' t e x p l a i n i t . I'm no superhuman pe rson , and there are t i m e s . . . I won ' t say 1 ques t ion why i t ' s happening...1 d o n ' t know why i t ' s happening to someone as t e r r i f i c as [my husband] , I r e a l l y d o n ' t . A l e t t e r from one of the grown c h i l d r e n l i v i n g away from home expressed a s i m i l a r sent iment . F F : "Why my mama!" was my i n i t i a l r e a c t i o n to the news. The word "cancer " to me i s a s s o c i a t e d w i th e x c r u t i a t i n g pa in and approaching dea th . I thought t ha t i f f a t e was f a i r i t would 've chosen someone o l d and m ise rab le j u s t p u t t i n g i n t ime i n a nurs ing home, not my chee ry , l o v i n g mama. The ques t ion ing tha t occur red i n r e a c t i o n to the presence of cancer was a l s o expressed i n a more general manner. MF: L i ke you hear of people g e t t i n g cancer and eve ry th i ng e l s e , and then when somebody gets i t , then you s t a r t r e a l i z i n g tha t u h . . . t h a t anybody . . .nobody 's immune. In severa l f a m i l i e s , the exper ience of un fa i r ness was expressed as a sense of susp i c iousness tha t someone somewhere must be respons ib l e f o r the blow t ha t had been dea l t the f a m i l y . MF: The re ' s l i k e t h i s t h i ng where l i k e a f t e r I saw tha t one program and t a l k i n g to [a f r i e n d ] . . . t h e r e ' s t h a t . . . h e was g e t t i n g p i s s e d o f f . R: mm hmm. MF: Because l i k e t h e y ' r e so c l o s e . And then i t seems l i k e the government doesn ' t want them to f i n d o u t , 'cause t h a t ' s . . . I guess t h a t ' s the number one f e a r . . . o f u h . . . h u m a n s . . . i s c a n c e r , because there i s no c u r e . And so through tha t the government can b r i n g i n a l o t o f money. R: mm hmm. MF: L i ke through donat ions and whatever . And i f they f i n d the c u r e , then they don ' t have any. The process of ques t i on ing appeared to generate a cons ide rab le degree of d i s t r e s s i n many of the f a m i l i e s . Accep t ing the f a c t t ha t ques t i on i ng was f u t i l e was desc r ibed by severa l f a m i l i e s as an a l t e r n a t i v e to expe r i enc ing t h a t d i s t r e s s . F F : But i t ' s j u s t . . . i t r e a l l y i s a mat ter of accep t ing and not q u e s t i o n i n g . Because ques t i on ing i s n ' t going to do any g o o d . . . t o keep going o n , "Why should i t happen? Why?" I t doesn ' t h e l p . F F : I guess i t ' s j u s t no good q u e s t i o n i n g , 'cause nobody knows why these th ings are happening. A second theme a s s o c i a t e d w i th fam i l y ph i losophy was tha t of acknowledging the p a t i e n t ' s p o s s i b l e eventual dea th . In d e s c r i b i n g t h i s e x p e r i e n c e , the f a m i l i e s tended to r e f e r to t e r m i n a l i t y as a p o s s i b i l i t y , and not as a c e r t a i n outcome. Sometimes the t h r e a t of death was h in ted a t i n the course of c o n s t r u c t i n g the accoun ts . FC: I had great hopes tha t I would l i v e long and a good hea l thy l i f e . FC: I want to l i v e j u s t l i k e everbody e l s e . I want to s tay h e r e . . . w i t h my f a m i l y . And i n a l e t t e r : F F : We can never f o rge t she has the d i s e a s e . I t ' s as i f t h e r e ' s a b i g , b lack c loud over our heads and one day i t ' s going to bu rs t and our l i v e s w i l l a l l change. Other f a m i l i e s acknowledged the presence of the th rea t i n d i r e c t l y by denying tha t i t had impact upon t h e i r l i v e s . MF: We're gonna beat t h i s . We're gonna l i v e a good l i f e . We got yea rs and yea rs together y e t , and t h a t ' s the way I look a t i t . And i f I look a t i t a n y . . . f r o m any o ther d i f f e r e n t po in t of v i e w . . . u h . . . I " m u h . . . I ' m one of those d e f e a t i s t s . When f a m i l i e s acknowledged the spec t re of death more d i r e c t l y , they d i d so w i th cons ide rab le emot ion . FC: W e l l . . . I f e e l angry t ha t I have to go. MC: I f I were to pass away R: mm hmm. MC: (burs ts i n t o t e a r s ) How w i l l she su rv i ve? T h a t ' s my on ly wor ry . F F : You don ' t have to worry about me. You j u s t worry and take care of y o u r s e l f . MC: Oh b u l l s h i t on me. I made my peace w i th God, and I have my house i n o rde r . R: mm hmm. MC: E v e r y t h i n g ' s a l l taken care o f . So what the h e l l am I going to worry about? F F : Be happy, t h a t ' s a l l . MC: I am happy. Acknowledging the p o s s i b i l i t y of death l ead to wondering when i t might o c c u r . An excerp t from a l e t t e r from a grown c h i l d i l l u s t r a t e s t h i s concern about the amount of t ime rema in ing . F F : Even i f the chemotherapy t reatments g ive her a few more yea rs i t ' s as i f her number has a l ready been c a l l e d and s h e ' s been ab le to delay going t h i s t ime but what about next t ime? Al though most f a m i l i e s presented a shared pe rspec t i ve as to what t h e i r f u t u res h e l d , there was evidence i n some f a m i l i e s tha t members d i d not d i s c u s s the p o s s i b l e t e r m i n a l i t y of cancer w i th each o t h e r . R: What's the worst par t of i t then? Is i t the worry o r . . . . FC: I th ink s o . In the back of your mind i s a lways . . .when i s i t going to re tu rn? R: mm hmm. FC: I t w i l l r e t u r n . You c a n ' t get away from t h a t . I t always does. I t always has when people get i t , you know. So you j u s t th ink about when's the axe going to f a l l and y o u ' r e f i n i s h e d t h e n . . . y o u k n o w . . . y o u ' r e . . . t h a t ' s i t . R: Do you both f i n d tha t thought p reoccup ies you qu i t e a l o t of the t i m e , or i s i t something tha t j u s t h i t s you every once i n a wh i le? FC: For me i t ' s . . . I th ink about i t qu i t e a b i t . What do y o u . . . ? ( to MF) MF: I t ' s not going to happen. FC: Oh. MF: Not f o r a long t ime . A t t imes , fami l y members seemed to s u r p r i s e each o ther w i th the views they expressed dur ing the research i n t e r v i e w s . MC: But i f [doc to r ] has never t o l d me to q u i t . Now i f he s a i d , " L i s t e n , e i t h e r you q u i t smoking or y o u ' l l be dead i n a month's t i m e , " (pause) I 'd s a y , "Le t me go and th ink i t o v e r . " R: mm hmm. MC: And I would th ink i t ove r . R: mm hmm. MC: And I 'd probably keep on smoking ( c h u c k l e ) . T h a t ' s how much a f r a i d I . . . t h a t ' s how much fea r I 've g o t . . . o f d y i n g . F F : Oh I t h ink i f they t o l d you to q u i t smoking you would. You s a i d you would . I t h ink you would. MC: Well what I s a i d and what I'm gonna do i s two d i f f e r e n t t h i n g s . You know people say a l o t of t h ings and then they r e t r a c t t h e i r s ta tements . In d e s c r i b i n g the exper ience of acknowledging the l i f e - t h r e a t e n i n g nature of the i l l n e s s , some f a m i l i e s por t rayed a view of the f u tu re tha t i nc l uded a sense of preparedness f o r dea th . MC: I d o n ' t want to th ink o f a l l the th ings tha t can happen, 'cause maybe somewhere along the road i t ' s going to happen, b u t . . . l i k e . . . w h e n i t comes, I ' l l be ready f o r i t . MC: I 've been p repar ing f o r . . . t o pass a w a y . . . w e l l , s i nce I s t a r t e d l i n e work. R: mm hmm. MC: T h a t ' s 35 years ago. The re ' s no change i n my out look on l i f e whatsoever . Another exper ience a s s o c i a t e d w i th the awareness of m o r t a l i t y , which was suggested by some of the f a m i l i e s , was a heightened v a l u i n g of l i f e i t s e l f . As one p a t i e n t e x p l a i n e d : MC: Unfo r tuna te ly i t sometimes takes an i l l n e s s to r e a l l y b r i ng you to t h i s . . . ' c a u s e most people you t a l k t o , you know, they never th ink about what'11 happen to me tomorrow. I mean we don ' t know from now t i l l an hour from now what 's going to happen. He l a t e r e labora ted on t h i s expe r i ence . MC: Well as I say , you know, l i f e i s so p rec ious tha t when you th ink tha t somewhere down the r o a d , you know, i t ' s going to go. I t ' s such a p rec ious t h i ng t h a t . . . y o u know. . .as I s a i d . . . i t ' s un for tunate tha t we have to have i l l n e s s e s to make us r e a l i z e how important i t i s . F i n a l l y , a few f a m i l i e s were ab le to i d e n t i f y aspects of t h e i r l i f e t ha t had perhaps been enr i ched by t h e i r having to cons ide r i t s end ing . F F : I th ink y o u ' r e more aware o f . . . I d o n ' t know...maybe the sun ' s sunn ie r and the f l owers are b r i g h t e r . . . a n d y o u ' r e more aware. FC: I th ink i t draws you much c l o s e r . You know l i k e uh. . .maybe y o u ' r e a f r a i d of tomor row. . .a l i t t l e . The common exper iences shared by these f a m i l i e s , t h e n , were those of seek ing answers to unanswerable ques t ions and con f ron t i ng the e v e n t u a l i t y o f dea th . A l l had asked themselves why they were chosen to undergo t h i s e x p e r i e n c e , and a l l had acknowledged, e i t h e r d i r e c t l y or i n d i r e c t l y , t ha t the exper ience might l ead to death of one of t h e i r members. Thus, a l though a l l f a m i l i e s desc r ibed changes i n emotional s t a t e , r o l e s , communicat ion, and ph i losophy r e s u l t i n g from the i n t r u s i o n of cancer i n t o t h e i r everyday l i v e s , they a l s o p e r s i s t e d i n exp ress ing the percep t ion tha t noth ing had changed. R: I was say ing I was i n t e r e s t e d i n what 's changed, and you s a i d , " W e l l , our l i f e ' s o r d i n a r y . " Can you t e l l me about tha t? What's o rd ina ry about i t ? MC: Well we l i v e t h i s very same k i nd of l i f e as we d id p r e v i o u s l y . We have no problems. We're not concerned about cance r . F F : So we haven ' t made any change a c t u a l l y i n . . . i n our l i f e s t y l e at a l l . J u s t c a r r i e d on . F F : I don ' t r e a l l y th ink i t ' s changed tha t much r e a l l y . FC: Yeah. I don ' t th ink s o , S a l l y . F F : I t ' s j u s t another i n c i d e n t i n our l i v e s , t h a t ' s a l l . FC: Yeah. Something t h a t . . . y o u know. . .you have to take i t when i t comes. As f a m i l i e s began to exp lo re the shape of t h e i r cancer exper iences i n i n c r e a s i n g dep th , exp lana t i ons of these c o n t r a s t i n g r e a l i t i e s began to emerge. The f i n a l two s e c t i o n s of t h i s chapter address the exp lana tory l a y e r s of the f a m i l i e s ' accoun ts . E x p l a i n i n g the Impact The f a m i l i e s exp la ined the phenomena they had desc r ibed i n terms of cho ices and s t r a t e g i e s . A d i s c u s s i o n of these exp lana t i ons w i l l c o n s t i t u t e t h i s second s e c t i o n o f Chapter 4. Wi th in t h i s d i s c u s s i o n , the concept o f a t t i t u d e w i l l appear f r equen t l y as a f a c t o r r e l a t e d to the e x p l a n a t i o n s . S ince a t t i t u d e forms the focus f o r the t h i r d and f i n a l s e c t i o n of t h i s Chap te r , and p rov ides a framework f o r i n t e g r a t i n g the prev ious d e s c r i p t i o n and e x p l a n a t i o n , i t w i l l not be addressed i n d e t a i l i n t h i s l a y e r o f the exp lana to ry accoun ts . Ra the r , t h i s s e c t i o n w i l l examine f a m i l i e s ' pe rcep t ions tha t they had chosen s t r a t e g i e s f o r coping w i th cance r . I t w i l l f u r t h e r exp lo re t h e i r pe rcep t ions tha t the success 71 of these s t r a t e g i e s e x p l a i n e d , a t l e a s t i n p a r t , how c a n c e r ' s p o t e n t i a l impact on t h e i r everyday l i v e s had been thwar ted . T h e i r a b i l i t y to ma in ta in the q u a l i t y of normalcy i n the face of the d i s r u p t i o n s r e s u l t i n g from the cancer exper ience was desc r ibed by f a m i l i e s as a product of cho ices they had made. They a l l b e l i e v e d tha t cho ices had to be made e a r l y i n the cancer exper ience as to the s t r a t e g i e s wi th which they would approach the impact of cancer upon t h e i r l i v e s . The f a m i l i e s pe rce ived tha t the e f f e c t i v e n e s s of the s t r a t e g i e s they had chosen accounted f o r the degree to which the presence of cancer had an impact upon the c h a r a c t e r i s t i c scheme of t h e i r everyday l i v e s . When one p a t i e n t was asked about the c o n t r a s t between the changes she had enumerated and her c l a i m tha t noth ing had changed as a r e s u l t of c a n c e r , she r e p l i e d , "I choose to th ink t h e r e ' s no d i f f e r e n c e t h e r e . " Many of the f a m i l i e s pe rce i ved themselves to have made d i f f e r e n t , and b e t t e r , cho ices than might o thers i n a s i m i l a r s i t u a t i o n . MC: That I guess i s the b igges t t h i ng wi th cancer f o r most people i s tha t when the doctor s a y s , "Ok, we l l s o r r y , but you ' ve got c a n c e r , " . . . t h a t ' s i t . L i f e ' s ove r . T h a t ' s i t . Huddle i n a corner and f o rge t about i t . You know t h a t ' s go t ta b e . . . I ' m sure i t happens to a l o t of peop le . Instead of l o o k i n g and s a y i n g , "Hey. Okay, d o c t o r , what can you do to help me? How f a s t can you do something so I can s tay here f o r awh i l e? " I t h i n k . . . I ' m sure tha t a l o t of people j u s t throw up t h e i r hands and say , " C a n c e r . . . T h a t ' s i t . The w o r l d ' s come to an end and t h a t ' s i t . " And i t r e a l l y doesn ' t have to be. One p a r t i c i p a n t compared the oppor tun i t y f o r cho ice to the maintenance of a s o l d i e r ' s sense of judgment i n b a t t l e . MC: So i t ' s the same t h i ng i n t h i s cancer b u s i n e s s . A l o t o f people l o s e t h e i r nerve and then they g ive up and they d o n ' t want to l i v e . They don ' t c a r e . The b e l i e f tha t they had made appropr ia te cho ices was a f f i rmed repeated ly dur ing the accounts by f a m i l i e s ' comparisons of themselves to o t h e r s . MC: Th is i s j u s t one t h i ng tha t you a c c e p t , and you go along w i th i t . I t ' s a l l pa r t o f the game, you know. T h a t ' s why I don ' t have pa t ience w i th people t ha t p a n i c . MC: Well we uh . . .we don ' t have much pa t ience f o r people tha t have s e l f - p i t y . References to the g loba l " they" o c c a s i o n a l l y i nc luded examples from the c o l l e c t i o n of cancer s t o r i e s t ha t had been a c q u i r e d . More o f t e n , however, " they " seemed to represent a general pe rcep t ion of how humanity a t i t s worst was i n c l i n e d to reac t to g iven s i t u a t i o n s . Throughout the c o n s t r u c t i o n of accoun ts , a l l f a m i l i e s r e f e r r e d repea ted ly to the behav ior o f the perce ived " they" to c o n t r a s t i t w i th t h e i r own approach to the exper ience of cancer . When f a m i l i e s a r t i c u l a t e d the major cho ices they had made, i t was apparent t ha t they were r e f e r r i n g to a b s t r a c t approaches ra the r than concre te t a c t i c s i n the management of everyday l i f e w i th cance r . F F : I t ' s up to you whether you want to do i t or no t . You have to r e a l i z e t ha t you want to do i t and you need to do i t . And i t ' s a l l up here (po in t s to head) . You know...how you t h i n k . . . . FC: Yup. F F : . . . a n d how you f e e l . F F : I t ' s mind over ma t te r . Whether i t ' s t rue or n o t , you know, you can prove i t r i g h t here and now. The importance of having some s o r t o f c o g n i t i v e s t r a t e g i e s was a theme common to a l l of the f a m i l i e s . MC: And t h e r e ' s nobody can change i t . . . o n c e you have i t , you have i t . You have to overcome i t by your a t t i t u d e . Al though f a m i l i e s pe rce ived themselves to have made consc ious cho ices i n t h e i r approach to the cancer e x p e r i e n c e , they desc r ibed these cho ices as l o g i c a l and natura l e v e n t s , r a t h e r than the f r u i t s o f i n t e n s i v e d e c i s i o n making. F F : I j u s t thought o f something. A f t e r [my husband] had h i s . . . i t was a f t e r h i s co los tomy, and we went down and saw [ the d o c t o r ] , and I remember coming out of [ the h o s p i t a l ] and [ the doc tor ] s a i d , you know, qu i t e p l a i n l y , " I t ' s . . . y o u know. . . I c a n ' t guarantee t h e r e ' s anyth ing c u r e d , or whatever . " I can remember wa lk ing ou t . Do you remember g e t t i n g i n the ca r and I was d r i v i n g 'cause i t was j u s t a f t e r you came out of the h o s p i t a l ? And I remember t u rn i ng to you and s a y i n g , "I d o n ' t know what i t ' s a l l abou t , " and I was c r y i n g , "but we ' re go ina to make the best of the days we've g o t . " Do you remember tha t? And I thought of t ha t severa l t i m e s , 'cause we sure have, haven ' t we? Much of the exp lana t i on f o r the impact o f cancer upon the f a m i l y ' s everyday l i v e s was expressed w i t h i n the con tex t of d e s c r i b i n g s p e c i f i c s t r a t e g i e s w i th which they had approached numerous f a c e t s of the cancer expe r i ence . The f o l l o w i n g e x p l o r a t i o n o f the f a m i l i e s ' accounts o f t h e i r s t r a t e g i e s i l l u s t r a t e s both the l o c a t i o n and the nature of the cho i ces they made. For the sake of a coherent p o r t r a i t , these s t r a t e g i e s have been grouped i n t o four broad c a t e g o r i e s : adapt ing everyday l i f e , c r e a t i n g a network, managing medical c a r e , and genera t ing hope. Th is c a t e g o r i z a t i o n of the s t r a t e g i c cho ices desc r i bed by f a m i l i e s does not presume to imply any s p e c i f i c order or magnitude to the s t r a t e g i e s . Ra the r , i t attempts to l i n k toge ther r e l a t e d themes w i t h i n an i n t e g r a t e d whole i n order to f a c i l i t a t e p resen ta t i on o f the exp lana t i ons as they were cons t ruc ted i n the f a m i l i e s ' accoun ts . Adapt ing everyday l i f e The s t r a t e g i e s f o r adapt ing everyday l i f e were those tha t addressed the management of the ins t rumenta l and emotional a c t i v i t i e s of the f a m i l i e s on a day- to-day b a s i s . As has been desc r ibed p r e v i o u s l y , symptoms a s s o c i a t e d w i th cancer and i t s medical t reatment were exper ienced by a l l of the f a m i l i e s . One s t ra tegy used by severa l f a m i l i e s to min imize the impact of such symptoms was to " look on the b r i g h t e r s ide of t h i n g s . " Where p r i o r phys i ca l a b i l i t i e s had been l o s t , f a m i l i e s at tended to the a b i l i t i e s t ha t had been r e t a i n e d . FC: Some people d o n ' t understand i t . How come I'm not b i t t e r I have to go and use a cane now. I s a y , " I 'm no t . I'm thank fu l I...I can s t i l l walk a round. " You don ' t take tha t k i nd of a t t i t u d e . T h a t ' s no good. Then you resen t and you hate everybody. Grow to hate y o u r s e l f i n the end , t o o . T h a t ' s c r a z y . The re ' s no need f o r t h a t . Most of the f a m i l i e s f e l t s t r ong l y t ha t a cheer fu l and p o s i t i v e approach not on ly reduced the d i s t r e s s a s s o c i a t e d w i th symptoms but a l s o prevented them from o c c u r r i n g . When d i s c u s s i n g nausea r e s u l t i n g from chemotherapy, one woman s a i d , "I have found tha t i t ' s the very hyper , f r i g h t e n e d person who becomes i l l . " In e x p l a i n i n g s t r a t e g i e s conducive to symptom management, the f o l l o w i n g op in ions were exp ressed : MC: I s a i d the on ly t h i ng i s be chee r f u l . . . you ' 11 be t i r e d , y o u ' l l be depressed l o t s o f t i m e s , you won ' t f ee l l i k e e a t i n g , y o u ' l l f ee l nauseated, y o u ' l l f e e l l i k e v o m i t i n g . But the t h i ng u h . . . i n the process i s to ea t we l l and take your t reatment rega rd less i f you l o s e so much food from the vomi t . . .wash your stomach out u h . . . w i t h water and t h a t . . . y o u know, d r ink water and t h a t . . . a n d u h . . . k e e p e a t i n g . T h a t ' s the main t h i n g . R: mm hmm. MC: Don ' t g i ve up and s a y , "Wel l I f e e l s i c k . I know t h i s , I know t h a t . T h a t ' s the worst t h i ng you can d o . " MC: But u h . . . I mean I d i d n ' t u m . . . l a y i n wa i t to see what was going to happen.. .1 i ke when's the sky gonna f a l l i n . R: So you r e a l l y f e l t your a t t i t u d e toward i t had a l o t to do wi th keeping the symptoms away. MC: Yeah, I t h ink s o . Most of the f a m i l i e s were conv inced tha t t h e i r b e l i e f s and a t t i t u d e s toward ac tua l and p o t e n t i a l symptoms had an impact on t h e i r exper ience of symptoms. The u n c e r t a i n t i e s a s s o c i a t e d w i th the cancer i n c l u d e d , f o r these f a m i l i e s , some d i f f i c u l t i e s p r e d i c t i n g the w e l l - b e i n g of the p a t i e n t on a d a i l y b a s i s or i n the months ahead. Many of the f a m i l i e s exp la ined tha t they had evo lved a s t ra tegy w i th which to deal w i th p l a n n i n g . The s t r a t e g i e s tha t were desc r ibed v a r i e d c o n s i d e r a b l y . Some approached the problem by not p lann ing anyth ing very f a r ahead of t ime . FC: So you have to s o r t of p lan day to day. Where i f you d o n ' t know you have any k ind of d i sease or l i k e i f you don ' t have cancer you p lan your f u t u r e , which we had, you know, a l l planned out f o r when you r e t i r e . R: Do you f i n d t ha t you p lan th ings d i f f e r e n t l y ? FC: Yeah. Yeah. So I don ' t p lan ( c h u c k l e ) . R: You d o n ' t p lan t h i n g s . FC: No. No I don ' t have any p l a n s . J u s t get up and go when I f e e l l i k e i t . R: mm hmm. FC: Yeah. No use to p l a n . Even the people t ha t are w e l l , they s t i l l p lan and they s t i l l . . . b u t something goes wrong. F a m i l i e s who had adopted t h i s s t ra tegy argued i t s appropr ia teness i n the sense tha t the fu tu re i s unp red i c tab le f o r everyone, i l l or w e l l . F F : You know, r e a l l y , I t h ink maybe t h i s i s one of the th ings tha t I keep t h i n k i n g about i s . . . I d o n ' t know.. .nobody knows what tomorrow's going to h o l d , and i f we can keep tha t i n mind and remember t h a t . . . i t ' s not easy . I'm not going to s i t here and say , " look i t ' s a c i n c h , " 'cause i t i s n ' t . I j u s t have to keep reminding mysel f t h a t . . . o n e day at a t i m e . . . o r a couple of days . L e t ' s j u s t p lan f o r t h i s weekend and not worry about th ree months from now, you know. FC: You c a n ' t p lan i t . Maybe you s h o u l d n ' t f ee l tha t way because you never know a t . . .when y o u ' r e i n your s i x t i e s you never know what 's going to happen anyway. Other f a m i l i e s min imized the f e e l i n g o f unce r t a i n t y about t h e i r f u tu res by r e f u s i n g to a l l ow cancer to have an impact upon the way they planned t h e i r l i v e s . FC: I don ' t know u h . . . I say the long range u h . . . I h a v e . . . u h . . .1 haven ' t put a t ime l i m i t on what the long- range pe r i od might be. I j u s t don ' t th ink t ha t way. R: mm hmm. FC: As long as I f ee l good, I'm . . . u h . . . I ' m not making those k ind of p l a n s . FC: I 've always been a l i t t l e more c a r e f u l w i th the d o l l a r than some o f the r e s t o f the f a m i l y , and u h . . . [ r e l a t i v e ] w i l l say to me . . . has s a i d to me more than once, " I f you want a n y t h i n g , go and get i t . Don ' t j u s t save i t , " . . . a n d you know. . .wh ich sometimes I wonder i f she th inks the long range p lan might be a shor t - range p l a n . F F : ( l oud l y ) No I d o n ' t ! FC: And u h . . . b u t no , no I don ' t uh . . .assume f o r one minute t ha t u h . . . I might be s i c k next week or the week a f t e r t ha t and I must do t h i s d i f f e r e n t l y o r . . . a n d tha t d i f f e r e n t l y . Not at a l l . One f a m i l y ' s s t ra tegy was to cont inue making p l a n s , but to cons ide r these p lans as en joyab le f a n t a s i e s ra the r than c e r t a i n t i e s . MC: We make p l a n s , but we don ' t s a y . . . u m . . . t h i s i s an obsess ion wi th u s . No way. R: So you enjoy the fun of check ing out the va r i ous p lans a n d . . . . MC: Oh h e l l y e s . Another f am i l y desc r ibed t h e i r approach as p lann ing f u r t h e r ahead than before they had cance r . MC: And we s o r t of um. . . p l an f a r t h e r ahead. R: You p lan f a r t h e r ahead? MC: Oh what we are going to do. Because l i k e u h . . . y o u get tha t sword hanging over your h e a d . . . n o t the f a c t tha t y o u ' r e expec t ing i t to f a l l any day, but u h . . . l i k e u h . . . I would say l i k e my reserve s t r e n g t h . . . I haven ' t got what I had. The p o t e n t i a l f o r t rans fo rming the unce r ta i n t y i n t o a mo t i va t i ng f a c t o r was h in ted at by a number of f a m i l i e s . MF: You get a . . . b e t t e r out look on l i f e as f a r as l i k e um. . .no t pu t t i ng o f f t h ings you want to do. R: mm hmm. MF: T h a t ' s l i k e i f you w a n t . . . l i k e . . . w e l l I 've never t r a v e l l e d , and 1 i k e . . . e v e r y t h i n g t h a t ' s happened. . . I f i g u r e i f I d o n ' t do i t now then I might not get a chance. F F : But i t ' s j u s t l i t t l e t h ings l i k e t h a t . We j u s t . . o t h e r t i m e s , you know, we've got up and t h e r e ' s th ings to do and then by the t ime the day ' s over we always s a i d , "You know what we should have done. . .we should have done t h i s . " R: mm hmm. F F : Now we ' re doing i t . Although f a m i l i e s employed a v a r i e t y of s t r a t e g i e s toward p l a n n i n g , a l l pe rce ived the s t r a t e g i e s they had adopted to be r e a l i s t i c and e f f e c t i v e t o o l s i n m in im iz ing unce r ta i n t y about the f u t u r e . Desp i te v i v i d d e s c r i p t i o n o f p h y s i c a l t rauma, emotional t u r m o i l , and e x i s t e n t i a l doubt , the f a m i l i e s tended to emphasize the p o s i t i v e aspects o f the l i v e s they were l e a d i n g . R: Well you both c e r t a i n l y seem to be people who enjoy l i f e a l o t . FC: Yes we do. We u h . . . I th ink u h . . . I cou ld be f a r worse o f f than I am. R: Well I'm j u s t . . . I t h ink the s to ry you ' ve t o l d i s very imp ress i ve . You've been through su rge ry , and three r a d i a t i o n courses? FC: Yeah. R: And now chemotherapy. FC: Yeah. R: The b i g three k inds of t reatment everybody t a l k s a b o u t . . . . FC: mm hmm. R: . . . a s i f t h e y ' r e so h o r r i b l e . FC: Yes . R: And y o u ' r e s t i l l t e l l i n g me tha t l i f e i s good. FF : Oh y e s . FC: Oh I should say s o . Good heavens, y e s . What the f a m i l i e s were c l e a r l y d e c l a r i n g was the va lue they p laced upon normalcy i n t h e i r everyday l i v e s . The c r i t e r i a used to eva lua te normalcy were p e c u l i a r to each f a m i l y . Wi th in t h i s c o n t e x t , none of the f a m i l i e s used i l l n e s s f a c t o r s as measures o f the degree to which t h e i r l i f e was normal . Ra the r , each a r t i c u l a t e d a unique y a r d s t i c k t ha t had s i g n i f i c a n t meaning f o r t ha t f a m i l y . In one f a m i l y , the husband's a b i l i t y to cont inue going on f i s h i n g t r i p s i n s p i t e o f having to leave h i s i l l w i f e a t home was the y a r d s t i c k f o r normalcy expressed by both p a r t n e r s . In ano ther , the f a c t tha t the p a t i e n t was ab le to cont inue working was a c r i t e r i o n f o r normal l i f e . A t h i r d f a m i l y , when asked what was normal about t h e i r l i f e r e p l i e d , ''We s t i l l d r ink and smoke." Other f a m i l i e s expressed t h e i r concept of what makes a l i f e normal i n a v a r i e t y o f ways. MF: I mean d o m e s t i c a l l y - w i s e . . . c o m p a n i o n s h i p - w i s e . . . u h . . . 1 i v i n g -w i s e . . . u h . . . o u r whole l i f e i s j u s t the same as i t ' s always been. The re ' s very l i t t l e change t h e r e . We have peop le . . .we go out and p lay cards w i th them. They come down here and p lay cards w i th u s . MC: [ I f I d i d n ' t have cancer ] the s t y l e would be the same. I s t i l l l i k e people even though . . . even w i th the cance r . I mean I never l e t i t bother me. . .go around and say , " I t ' s too bad. I t ' s too bad . " Even my aunt s a i d , "Oh I hear you ' ve go tha t dreadfu l d i s e a s e . " " O h , " I s a i d , " I 'm s t i l l h e r e . " (chuck le ) FC: [My doc tor ] f i n a l l y a l lowed me to go back to p l a y i n g a b i t o f g o l f as long as I d o n ' t overdo i t . And to me tha t was a great p l u s , ' c a u s e , you know, there was a day when I thought I 'd never do t h i s a g a i n , yeah? MF: Before mom had cance r . . . 1 i k e we've always been a c l o s e f a m i l y . And as f a r as u m . . . l i k e g e t t i n g toge ther a l o t of t imes or j u s t coming by to v i s i t . And when we found out mom had c a n c e r , l i k e i t wasn ' t l i k e we'd get together j u s t once i n awhi le or once i n a w h i l e . 'Cause i f l i k e . . . f o r e v e r y . . . j u s t about every occas ion p lus b i r t h d a y s . . . 1 i k e everybody gets together and comes he re . So as f a r as tha t g o e s . . . l i k e no th i ng ' s r e a l l y changed. MC: L i k e I s a y , we've been to Reno tw ice i n December. R: Yeah. Twice? MC: So I m e a n . . . y e a h , tw ice i n December. F F : Oh y e s . MC: So I mean u h . . . ' c a u s e we both love gambl ing. R: mm hmm. MC: T h a t ' s pa r t of my na tu re . We used to have gambling games here every Sunday. F F : Shhh! Shhh! These c r i t e r i o n re fe rences i n pa r t exp la ined the d iscrepancy between how the f a m i l i e s descr ibed t h e i r everyday l i v e s i n r e l a t i o n to cancer and how they eva lua ted tha t d e s c r i p t i o n . Al though f a m i l i e s were aware tha t aspects of t h e i r l i v e s might not appear normal to an o u t s i d e r , they used t h e i r own se t of c r i t e r i a to de f ine normalcy i n t h e i r everyday w o r l d . R o l e - f u n c t i o n changes were d i scussed e a r l i e r i n t h i s chapter as a fea tu re o f the cancer expe r i ence . The f a c t t ha t r o l e s h i f t i n g had produced minimal d i s r u p t i o n i n most f a m i l i e s was exp la ined i n the c o n s t r u c t i o n of accoun ts . In terms of ins t rumenta l r o l e s , f a m i l i e s tended to balance the impact of r o l e l o s s e s w i th the r o l e r e t e n t i o n s and r o l e a c q u i s i t i o n s . In a d d i t i o n , a l l of the f a m i l i e s had preserved the emotional r o l e s of t h e i r members. Many of the p a r t i c i p a n t s were ab le to p rov ide a c l e a r d e s c r i p t i o n of the r o l e s they p layed i n the f am i l y emotional dynamics. F F : Oh I'm the l e v e l e r I suppose. MC: Oh y e a h . R: The l e v e l e r . MC: She 's a good l e v e l e r . R: There would need to be one I guess i n a fam i l y of so many determined peop le . MC: She can slow us a l l down. F F : W e l l , I'm too slow to s t a r t w i th ( c h u c k l e ) . R: So you keep them a l l s e n s i b l e . Is tha t your job? FF : Well I t r y t o . . . t o calm the storms when they come up. T h a t ' s about the on ly t h i ng I cou ld do. None of the f a m i l i e s i n t h i s study had permi t ted the c h a r a c t e r i s t i c d i r e c t i o n of emotional support to be a l t e r e d as a r e s u l t of the presence of cance r . Where the cancer p a t i e n t had f u l f i l l e d an emot iona l l y suppor t i ve r o l e p r i o r to the onset of c a n c e r , he or she re ta ined tha t f am i l y f unc t i on when i l l . F F : I ' l l t e l l you what. [My husband's ] l i k e um. . . a l i t t l e l i k e a d o c t o r , but h e ' s a pe rson . I never t o l d him t h i s b e f o r e . He 's l i k e a pe rson . H e ' l l he lp you o u t , you know, whether you have problems or anyth ing e l s e . FF : I can get a l l ranty and ravey , and [ h e ' s ] a t e r r i f i c l i s t e n e r . I mean I never get annoyed a t work, I come home and get annoyed. And then I ' l l l a y i n bed and t h i n k . . . I d o n ' t know w h y . . . i t i s n ' t t ha t impor tant anymore. . .and tha t he lps a l o t . Even j u s t i n my everyday f r u s t r a t i o n . FF : [She] would se t the pace f o r our f e e l i n g s , you know. I f she w e r e . . . u h . . . t h e type of person tha t w o u l d . . . u h . . . w a l l o w i n s e l f p i t y or something l i k e t h a t , I suppose we'd have to change our a t t i t u d e s to compensate or whatever. F F : I would be very much more depressed and probably s tay depressed i f [ h i s ] a t t i t u d e was d i f f e r e n t . I t ' s h i s a t t i t u d e and s t reng th I'm sure tha t u h . . . b r i n g s me a l o n g . Thus the f a m i l i e s min imized the impact of cancer upon t h e i r r o l e r e l a t i o n s h i p s by a c q u i r i n g and r e t a i n i n g ins t rumenta l r o l e s , and by p rese rv i ng t h e i r c h a r a c t e r i s t i c emotional r o l e s t r u c t u r e s . " S t i c k i n g toge ther " was y e t another s t ra tegy used to approach the cancer expe r ience . Many i l l u s t r a t e d the importance of t h i s s t ra tegy by r e l a t i n g cancer s t o r i e s i n which fam i l y break-up had been t r i g g e r e d by the d i agnos i s of cancer i n one of i t s members. " S t i c k i n g toge ther " seemed to imply shar ing the repe rcuss ions of cancer w i t h i n the fam i l y group. MC: I th ink t h a t ' s impor tant too t h a t . . . t h a t you s t i c k together when y o u ' r e going through something l i k e t h i s . You've got to have somebody to s t i c k together w i th y o u . . . t o be a longs ide of you and u h . . . i t ' s n i c e to know t ha t somebody wor r ies about y o u . You know, I t e l l her not to wor ry , t h a t . . . y o u k n o w . . . t h i n g s are going to work out okay, but we ' re a l l human and we a l l have to have a . . . y o u know. . .we ' re a l l going to worry a b i t . . . n o doubt about i t . For some f a m i l i e s , " s t i c k i n g toge ther " meant ma in ta in ing open l i n e s of communicat ion. R: . How does a fam i l y do t h a t . . . s t i c k together? FF : We l l . . . I ' 11 t e l l you one th i ng i s u h . . . t h e y go t ta l i v e together and they g o t t a . . . . MC: Learn to share t oge the r . F F : . . . s h a r e toge ther and eve ry th i ng e l s e . MC: Share t h e i r f e e l i n g s . MC: The b igges t t h i ng i n a f a m i l y . . . f a c i n g c a n c e r . . . i s being open wi th one ano ther . Very open. MC: I th ink a l o t of people have t h i s problem i s they j u s t . . . y o u know. . . they don ' t l i k e t a l k i n g to t h e i r pa r tne rs about i t . But then I th ink t h a t ' s wrong. I th ink i t ' s so wrong. You've got to share your prob lems, you know, 'cause i t ' s a b i g under tak ing t o . . . t o c a r r y i t w i th you a l l by y o u r s e l f . I t r e a l l y , r e a l l y i s . Severa l f a m i l i e s pe rce ived the freedom to openly express emotions as a s i g n i f i c a n t aspect o f shar ing the exper ience as a f a m i l y . For these f a m i l i e s , being ab le to c ry i n the presence of o ther members was expressed as a s i g n i f i c a n t coping s t r a t e g y . MC: Maybe one t h i ng t o o . . . t h a t we'*"" v»rv c l o s e and we can cry t oge the r . And t h a t ' s a b i g r e l i e f . I went to see [ the doc to r ] l a s t week and he s a i d , "Hey. You look so good today , " you know. "What happened?" I s a i d , " I ' l l t e l l you what, d o c t o r , " I s a i d , " I . . .my w i fe and I had a good c ry on each o t h e r ' s shou lders l a s t n i g h t . We r e a l l y had a good c r y . " And he s a i d , " T h a t ' s supe r . " He s a i d , " I f more people cou ld do t h a t . . . " I t takes the pressure o f f peop le . And we've had three or four good, ,you k n o w . . . j u s t emotions tha t were pent up. MC: You know, most men s a y , "Yeach . I c a n ' t c r y , " and t h a t . Tha t ' s a bunch of nonsense. You k n o w . . . l e t y o u r s e l f go and have a good c r y . I t doesn ' t do any harm. I t d o e s n ' t . . . i t doesn ' t make you any l e s s of a m a n . . . c r y i n g . I don ' t care what anybody s a y s . The meaningfu lness of being ab le to cry was i l l u s t r a t e d i n t h i s defence of the s t ra tegy by one f a m i l y . MC: Well t h e r e ' s t h ings tha t people say to [my w i f e ] . "Now whatever you do, don ' t c ry i n f r o n t o f [ h im ] . " FF : Oh y e s . MC: "Now d o n ' t upset h im. " R: You've had t ha t a d v i c e , have you? FF : Oh y e s . I 've had i t . MC: Oh boy I'm t e l l i n g y o u . . . d o n ' t l e t me hear them t e l l i n g you t h a t . FF : I have had . . .we l l -mean ing p e o p l e . . . . MC: I s a i d , " I ' l l put them i n t h e i r p l a c e . " I want her to c r y . I don ' t care i f she c r i e s i n f r o n t of me. I want her c r y i n g i f she f e e l s l i k e c r y i n g . I want her to c r y . On the other hand, not a l l of the f a m i l i e s pe rce ived open express ion of emotion to be a p roduc t i ve approach to l i v i n g w i th cance r . As has been mentioned e a r l i e r , severa l f a m i l i e s exp la i ned tha t a l though they d i d exper ience emotional u p s e t s , they chose not to express t h e i r sadness , f e a r s , or wor r ies to each o t h e r . Many of these f a m i l i e s openly acknowledged the f a c t t ha t they h id emotions from each o t h e r , and expressed t h i s as a shared s t ra tegy w i t h i n the f a m i l y . F F : U h . . . w e l l you worry about the pe rson . R: mm hmm. F F : But you t r y not to show i t e v e r . The f a c t tha t they were ab le to e x p l a i n t h i s to the researcher i n the con tex t of a fam i l y group i n t e r v i e w suggested tha t they pe rce ived t h e i r l a c k o f open communication to be a f am i l y s t y l e o r s t ra tegy ra the r than a f am i l y shor tcoming. Thus the p a r t i c i p a n t f a m i l i e s desc r ibed both exp ress ing emotions and concea l i ng emotions to be e f f e c t i v e s t r a t e g i c approaches, i n keeping w i th t h e i r own c h a r a c t e r i s t i c s t y l e s . The f i n a l theme a s s o c i a t e d wi th adapt ing everyday l i f e was tha t of u t i l i z i n g s t r a t e g i e s to c i rcumvent worry and s e l f - p i t y . FC: I am u h . . . t h e c a n c e r . . . u h . . . s a y , v i c t i m . T h a t ' s not a good word b u t . . . I ' m the one wi th the c a n c e r . Well i f . . . i f [ r e l a t i v e ] was worry ing and s tew ing , you know. . .and d i f f e r e n t people around me worry ing and stewing and watching my every move u m . . . n a t u r a l l y i t would r e f l e c t i n . . . i n my a t t i t u d e toward i t . R: mm hmm. FC: And then i f you were a c e r t a i n t y p e . . . u h . . . y o u would u h . . . a l l of a sudden s t a r t f e e l i n g so r ry f o r y o u r s e l f and t h e s e . . . p e r h a p s aches and pains would r e a l l y man i fes t themselves and um. . . so I do f e e l tha t i t ' s t h e . . . a l o t to do w i th the people around you a n d . . . a n d t h e i r approach to i t . Worry and s e l f - p i t y were viewed as major demons th rea ten ing f a m i l i e s l i v i n g w i th cance r , and most f a m i l i e s possessed cancer s t o r i e s t ha t i l l u s t r a t e d the nature of the t h r e a t . The s t o r i e s emphasized the need expressed by these f a m i l i e s to f i n d s t a t e g i e s to avo id worry and s e l f - p i t y . MF: What's t h a t . . . w h a t do you c a l l tha t? A f a t a l i s t i c ou t look? What's gonna happen's gonna happen. R: Worrying about i t doesn ' t change t h i n g s . MF: No. Only drags you down. F F : I j u s t . . . I c a n ' t understand people who can s i t a n d . . . a n d uh . . .wo r r y and worry and worry and worry about themselves. I t ' s s o r t o f . . . i n a way i t ' s s e l f i s h i s n ' t i t . . . y o u know, to keep on stewing and s tew ing . Humor was mentioned by severa l f a m i l i e s as a means of overcoming worry and s e l f - p i t y . MC: People t ha t are funny, t h e y ' r e more apt to f i g h t i t and get over i t , because the s imple reason i s they don ' t l e t i t get em down to worry . S t r ess i s one t h i ng tha t i s the worst t h i ng you can do. Many of the s t r a t e g i e s desc r ibed had to do w i th not dwe l l i ng on the sub jec t of cancer . MC: The main t h i ng i s f o r people when they got cancer i s to f o rge t about themselves . Carry on as i f noth ing happened and they haven ' t got i t . R: Carry on as i f noth ing happened and they haven ' t got i t ? MC: T h a t ' s r i g h t . R: Is tha t p o s s i b l e ? MC: Yes i t i s p o s s i b l e . Very much s o . How do you th ink I got t h i s f a r i n two years? FC: We j u s t d o n ' t s i t around and d i s c u s s our a i l m e n t s . R: mm hmm. FC: The re ' s so many o ther i n t e r e s t i n g t h i n g s . Th i s s t r a t e g y , common to most of the f a m i l i e s i n t h i s s tudy , d i d not deny the presence of c a n c e r , but focussed a t t e n t i o n i ns tead upon the i s sues and a c t i v i t i e s a s s o c i a t e d w i th l i v i n g i n the everyday w o r l d . Ma in ta i n i ng involvement w i th people and a c t i v i t i e s was a f r equen t l y mentioned s t ra tegy f o r p revent ing worry and s e l f - p i t y . FC: I th ink a l o t of p e o p l e , t h e y . . . t h e y ' r e by themselves too much a n d . . . a n d then they tu rn inward . They get f e e l i n g so r ry f o r themselves. And t h i s causes a l o t o f problems. R: mm hmm. F F : 'Cause they c a n ' t cope w i th p a i n . FC: They j u s t c a n ' t cope w i th i t and as I s a y , i f you s i t a n d . . . a n d you got a l i t t l e ache and y o u ' r e by y o u r s e l f . . . t h e n a l l o f a sudden tha t ache i s a dreadfu l p a i n . F F : I t ' s j u s t . . . j u s t the l i t t l e t h ings t ha t a r e . . . I mean i f keeping b u s y . . . I th ink t h a t ' s a b i g t h i n g . I th ink i f you can keep busy and make a po in t of l i k e g e t t i n g up to the Metro Theatre and Stud io 58. J u s t . . . I don ' t know. . j us t being i n v o l v e d , I guess. The f a m i l i e s were unanimous i n t h e i r pe rcep t ion tha t keeping busy was a key s t ra tegy i n s u c c e s s f u l l y managing the cancer expe r i ence . MC: Well i f y o u ' r e not busy , then you j u s t s i t down and what do you do? You th ink about your problems. F F : Well you dwel l on i t . T h a t ' s the t r o u b l e . MC: And t h a t ' s a l l you th ink and t a l k about . I t ' s . . . y o u k n o w . . . i t ' s bound to drag you r i g h t down h i l l . I f you keep y o u r s e l f busy , Man you haven ' t got t ime to be down. MC: I f you s i t around and watched the c lock go 'round y o u ' d never get anywhere, r i g h t ? The s t r a t e g i c approaches adopted by these f a m i l i e s to adapt everyday l i v i n g to the presence of c a n c e r , t h e n , i n c l u d e d : fo rmu la t i ng b e l i e f s w i th regard to symptoms; f i n d i n g ways to p lan t ha t min imized the unce r ta i n t y of the f u t u r e ; e v a l u a t i n g normalcy accord ing to unique c r i t e r i a ; p rese rv ing and ma in ta in ing f am i l y r o l e r e l a t i o n s h i p s ; f a c i l i t a t i n g fam i l y s o l i d a r i t y through express ing or not exp ress ing emotions open ly ; and, m in im iz ing worry and s e l f - p i t y by keeping busy , i n v o l v e d , and a c t i v e . Accord ing to the f a m i l i e s , the success fu l ness of the s t r a t e g i e s they had chosen was r e f l e c t e d i n the normalcy w i th which they were ab le to l i v e t h e i r everyday l i v e s . Whi le some s t r a t e g i c approaches were shared by a l l f a m i l i e s i n t h i s s tudy , there were severa l i ns tances i n which c o n t r a s t i n g approaches had ach ieved equa l l y success fu l r e s u l t s . Evo l v i ng a network The second group of s t r a t e g i c approaches a r t i c u l a t e d by the f a m i l i e s to e x p l a i n t h e i r exper ience revo lved around the c e n t r a l theme of evo l v i ng a network. The s o c i a l pa t te rns of most of the f a m i l i e s i n t h i s study underwent some change as a r e s u l t o f having cance r . F a m i l i e s pe rce ived t h e i r s o c i a l l i f e to be a s i g n i f i c a n t aspect of t h e i r everyday r e a l i t y . FC: But I had s t a r t e d . . . u h . . . m o r e ever s i nce my mother d i e d . . . u h . . . t o t r y and get out more wi th my f r i e n d s a n d . . . y o u know, meet them down town and get out o f the house a b i t . But now t h a t ' s ended. When changes were i d e n t i f i e d , many f a m i l i e s attempted to formulate an unders tanding of the phenomenon. MC: And uh . . .we o f ten wonder i s t h i s why p e o p l e . . . y o u k n o w . . . h e s i t a t e having you i n t o the house type of t h i n g . Cause t h e y ' r e scared what y o u ' r e b r i n g i n g i n . R: mm hmm. MC: And they don ' t l i k e to say a n y t h i n g , but u h . . . t h e y r e a l l y don ' t unders tand. And i f you d o n ' t understand i t , you know. . .someth ing about c a n c e r . . . t h e n i t i s a scary t h i ng I'm su re . Many of the f a m i l i e s desc r ibed s t r a t e g i e s they used to f a c i l i t a t e the r e t e n t i o n of the s o c i a l wor lds they enjoyed p r i o r to having cance r . Severa l f e l t tha t the a t t i t u d e w i th which you approach o thers was a key f a c t o r i n t h e i r response. Being cheer fu l and p o s i t i v e was one such approach. MC: As you s a y . . . o t h e r peop le . I don ' t mind t e l l i n g them i f they ask me how I'm d o i n g . . . I have a tendency to say , "Hey, t e r r i f i c . " My w i fe says to me, "Would you p lease stop say ing t e r r i f i c , 'cause y o u ' r e not t e r r i f i c . " And I say , "I know, but I hate to keep, you know, I hate say ing anyth ing to somebody tha t " . . . o h w e l l . So now I f i n d i t ' s . . . I j u s t say , "I take one day a t a t ime , and I enjoy i t . " And u h . . . ' c a u s e I want to be p o s i t i v e about t h i s t h i ng you know. FC: I th ink people get t i r e d o f you c r y i n g too and uh. .you know, they might stop coming i f you s t a r t compla in ing a l o t o r . . . y o u r f am i l y might d e c i d e ^ i t ' s . . . y o u know. . .no p leasure v i s i t i n g , you know. R: So i t sounds l i k e you ' ve made a d e c i s i o n to avo id compla in ing i f a t a l l p o s s i b l e . FC: U h . . . y e s . Yeah. R: mm hmm. FC: I t ' s not going to do any. . .make any change i s i t . L e t t i n g o thers know of the l i m i t a t i o n s and c a p a c i t i e s of the fam i l y i n view of the p a t i e n t ' s phys i ca l c o n d i t i o n was another s t ra tegy used by a l l who attempted to ma in ta in s o c i a l r e l a t i o n s h i p s . F F : And t h i s i s what I'm say ing to p e o p l e . . . y o u k n o w . . . " D o n ' t ignore u s . C e r t a i n l y wh i l e we ' re a b l e . . . h a v e us o v e r . . . j u s t to come f o r c o f f e e . " Cen t ra l to ma in ta in ing o l d f r i e n d s h i p s throughout the cancer exper ience was the s k i l l of address ing and m in im iz ing the f ea rs o thers might have about the d i s e a s e . R: I t must be d i f f i c u l t t r y i n g to l i v e y o u r . . . t r e a t your s o c i a l l i f e normal ly i f people are a c t i n g a b i t p e c u l i a r . F F : Yeah. I t ' s e x t r e m e l y . . . . MC: Well you have to s i t down and e x p l a i n i t to them. We do t h i s . W e ' l l t a l k to our f r i e n d s and w e ' l l s a y , "Now l o o k . We want you to understand what 's going o n , okay? And don ' t be scared because, you know, t h e r e ' s noth ing t h a t ' l l jump from me to you and y o u ' r e gonna end up w i th c a n c e r . . . a n d tha t doesn ' t happen. And you have to end up e x p l a i n i n g to your f r i e n d s . And then from then on you r e a l l y don ' t have any problems i f you e x p l a i n i t to them um. . .as best you can e x p l a i n . . . u m . . . c a n c e r . I mean how do you e x p l a i n i t r e a l l y ? I t ' s something tha t happens to y o u , but u m . . . j u s t t h i s f e e l i n g you h a v e . . . t h a t you can accept i t . And u h . . . y o u r f r i e n d s are much. . . they can handle i t much e a s i e r than i f you don ' t say any th i ng . Thus most f a m i l i e s exp la i ned t h e i r a b i l i t y to cont inue an involvement i n the s o c i a l wor ld as a product of the s t r a t e g i e s they had used i n approaching other peop le . In a d d i t i o n to t h e i r exper iences i n o b t a i n i n g medical c a r e , most f a m i l i e s desc r ibed having to r ece i ve help from o u t s i d e r s as a r e s u l t o f hav ing cance r . Many d i d not r e l i s h the idea t ha t they were i n need of any h e l p . FC: The neighbors have o f f e r e d , but we r e a l l y d o n ' t need them. R: mm hmm. FC: Except f o r company and uh . . .phone c a l l s and th ings l i k e t h a t , you know. But o ther than t h a t . . . o t h e r k i nd of he lp we don ' t need. Thus one of the th ings f a m i l i e s tended to app rec ia te was he lp tha t was s u b t l e and c o v e r t . FC: They seem very g lad to see you and um. . .he lp w i thout you being ove r l y aware of t h e i r h e l p i n g . FC: They l i k e to he lp me t o o , you know, but always they j u s t l e t me manage i t and d o . . . l e t me wa l k . . . some th i ng l i k e tha t you know. I l i k e to ho ld t h e i r hand i n case I f a l l o r something l i k e t h a t . So I s a i d , " L e t me wa lk , " o r i f I c a n ' t walk and I need help I l e t them know. I get too independent ( c h u c k l e ) . R: So they don ' t take o v e r . . . . FC: Yeah. R: . . . a n d take away your independence? FC: Yeah. T h a t ' s r i g h t . I t l e t s you f e e l b e t t e r tha t way, S a l l y , i f you are h e l p l e s s . Many f a m i l i e s exp la ined tha t the a t t i t u d e of the he lper was an e s s e n t i a l f a c t o r i n t h e i r a b i l i t y to r e c e i v e he lp wi thout being d i s t r e s s e d about i t . FC: None of them f e e l , so r ry f o r me, which i s um. . . I always say one of the worst emotions one can have f o r another human b e i n g . . . i s p i t y . FC: T h a t ' s one t h i ng I c a n ' t s t a n d . . . p i t y from peop le . F a m i l i e s exp la ined the k inds of he lp ing behav iors they app rec ia ted from others i n terms of the degree to which the he lp enhanced normalcy i n t h e i r everyday l i v e s . Severa l spoke of having meals brought to them by f r i e n d s , and shared t o g e t h e r , as the s o r t o f s imple and non - i nvas i ve help they d i d not mind r e c e i v i n g . Many spoke of shar ing in fo rmat ion about c a n c e r , h o s p i t a l i z a t i o n , and i l l n e s s among f r i e n d s as a h e l p f u l phenomenon. However, when t h i s sha r ing a l s o i nc l uded hear ing the gruesome cancer s t o r i e s , severa l f a m i l i e s , as mentioned p r e v i o u s l y , took evas i ve a c t i o n . S o c i a l i n t e r a c t i o n i n general was pe rce ived by these f a m i l i e s to be h e l p f u l to them throughout the cancer e x p e r i e n c e . MF: Oh gee, somebody's dropping i n . . . t h e phone's r i n g i n g a l l the t ime . R: I t gets very busy around he re . FC: Yes . That h e l p s . . . t h a t he lps a g rea t d e a l . R: That does make a d i f f e r e n c e ? FC: Oh y e s . I t keeps your mind o f f y o u r s e l f and a l s o keeps you busy. MC: The best pa r t o f i t . . . I have f e l l o w s tha t u h . . . a l o t of them came i n t o h o s p i t a l and v i s i t e d me when I was i n t h e r e , and they s t i l l keep i n touch or phone. F a m i l i e s va lued f r i e n d s who were ab le to main ta in normalcy i n t h e i r i n t e r a c t i o n a l s t y l e . For example, the woman i n the f o l l o w i n g example enjoyed the f a c t t ha t co-workers cou ld joke about her h a i r l o s s . FC: L i ke yes te rday f o r e x a m p l e . . . u h . . . h e was making re fe rence and we. . the economics s i t u a t i o n being what i t i s . . . a n d he was mak ing . . . he made some comment a b o u t . . . n o wonder I 've got grey h a i r . And I s a i d , "Grey? I t ' s w h i t e . " And he s a i d , "Wel l a t l e a s t i t ' s my o w n , " . . . y o u know. So t h i s i s so r t of the rappor t we have. R: Yeah. FC: And I s a i d , "Wel l you always have the same h a i r s t y l e , which I d o n ' t . " You know t h i s i s . . . s o r t of the type of ban te r . For severa l f a m i l i e s , l i s t e n i n g was one of the most h e l p f u l ac ts tha t o thers cou ld p r o v i d e . Al though the f a m i l i e s tended to express the need to be heard as an occas iona l r a the r than a cons tan t need, they were very c l e a r about i t s s i g n i f i c a n c e . R: Nurses are who y o u ' d choose to t a l k to i f you needed to t a l k to somebody ou ts ide the f am i l y? MC: Yeah. Yeah. R: Why nurses? MC: Because I was around t h e r e . . . I t h ink i t was the second t ime I was t h e r e . . . . F F : The t ime they done the d i v e r t i c u l i t i s . MC: Yeah. They done the d i v e r t i c u i i t i s . . . t o o k out the s p l e e n , abdominal lymph nodes, and done the b iopsy of the l i v e r a l l i n one f e l l sw ipe. And I was f e e l i n g p r e t t y dumpy one a f t e rnoon . One of the nurses came i n to change the i . v . o r some bloody th i ng and I s t a r t e d to t a l k to her and she sa t there on the c h a i r and he ld my hand. I guess I must have gone on f o r 20 m i n u t e s . . . j u s t shoot ing my mouth o f f . I don ' t remember what I s a i d . I was c r y i n g and eve ry th ing e l s e . But she j u s t l i s t e n e d . F F : Which i s a b i g t h i n g . MC: Yeah. J u s t 1 i s t e n e d . . . j u s t he ld my . . . I remember her ho ld ing my hand. I don ' t even remember who i t was. The f a m i l i e s ' d e c i s i o n s to accept or not accept the he lp o f o thers appeared to be a form of s t ra tegy i n no rma l i z i ng t h e i r l i v e s w i th cance r . FC: There ' s a l l t ha t he lp out t h e r e , and u h . . . a n d you make up your mind tha t y o u ' r e going to accept i t and respond to i t i n a p o s i t i v e manner. S ince most f a m i l i e s d i d requ i re help from ou ts i de s o u r c e s , the s t r a t e g i e s they u t i l i z e d to min imize the impact of becoming a he lp r e c i p i e n t were to make d e c i s i o n s about the k inds of help they wanted to r e c e i v e , and the contex t w i t h i n which they were prepared to r e c e i v e i t . A second type of s t r a t e g y , which appeared to counterba lance the sense of being help r e c i p i e n t s , was a l s o desc r i bed by a l l of the f a m i l i e s . Each f am i l y s t r essed the importance of t h e i r g i v i n g he lp to o ther peop le . Severa l of the cancer p a t i e n t s and o ther f am i l y members cont inued r e g u l a r vo lun tee r or c h a r i t y work i n s p i t e of the presence of cancer i n t h e i r own l i v e s . Others t a l k e d of the va r i ous ways i n which they had been ab le to t r a n s l a t e what they had lea rned through t h e i r own cancer exper ience i n t o a means of he lp ing o t h e r s . MC: I 've helped more people s i nce I got cancer i n two y e a r s , b e l i e v e i t or no t . FC: So anybody tha t t a l k s to me now t h e r e . . . a n d I 've had, you know, the odd o n e . . . t h e y say , "Oh I th ink I have to have r a d i a t i o n . I'm p e t r i f i e d , " . . . y o u know. I ' l l s a y , "What f o r ? There ' s noth ing to i t , " . . . y o u know. S o . . . s o you t r y to be h e l p f u l . And I t a l k to as many people as I can about i t FC: Now to me t h a t ' s u h . . . t h a t ' s qu i t e a p l u s , you know, being ab le to help peop le . FF : Well I t h i n k . . . m y s e l f . ..1 ' m very much aware of how people f e e l . . . w h e n t h e y ' r e going through something l i k e t h i s . And I j u s t hope t h a t , you know, I 've been ab le to help [name]. I hope I'm ab le to help o t h e r s . . . o r tha t both of us a r e , because we can hones t l y s a y , "I know what y o u ' r e going through and have been through i t . " I t h ink t h i s i s impor tan t , and sometimes as I say I t h i n k . . . w e l l I guess the Lord has a reason f o r us to go through these i f we can j u s t unders tand. And perhaps what we i n tu rn can do. Thus the s t ra tegy of he l p i ng o thers f u l f i l l e d many purposes f o r these f a m i l i e s . In a d d i t i o n to m in im iz ing t h e i r sense of themselves as help r e c i p i e n t s , i t p rov ided a s p e c i f i c source of meaning to the cancer exper ience w i th which they l i v e d . R: So t h e r e ' s something about the exper ience tha t g ives you something tha t you can then use to he lp people t ha t you perhaps d i d n ' t have before? FF : Yes. T h a t ' s r i g h t . I t h i n k . . . w h a t would you s a y ? . . . p e r h a p s more s e n s i t i v e to them? Rather than j u s t g i v i n g out a sympathet ic r e p l y , maybe y o u ' r e more s e n s i t i v e to t h e i r r ea l f e e l i n g s . As one woman descr ibed i t , t h i s ex tend ing of help to o thers exp la ined her w i l l i n g n e s s to p a r t i c i p a t e i n t h i s s tudy . R: So somehow having cancer g ives you some s p e c i f i c and concre te u h . . . t h i n g tha t you can o f f e r to o ther people? FC: T h a t ' s r i g h t , and to help them. R: mm hmm. FC: And t h i s i n f a c t i s why u h . . . w e ' r e um.. .you k n o w . . . a l l o w i n g you to take these s e s s i o n s . I f u h . . . c e r t a i n l y to help you w i th your t h e s i s , but to h o p e f u l l y to he lp o ther u h . . . c a n c e r v i c t i m s . And to me t h a t ' s t e r r i b l y impor tan t . I t appeared from the accounts of these f a m i l i e s , t h e n , t ha t the c o n s t r u c t i v e use of t h e i r own exper ience i n he lp ing o ther people was a meaningful s t ra tegy f o r ma in ta i n i ng a p roduc t i ve everyday l i f e w i th c a n c e r . Al though some of the f a m i l i e s had f r i e n d s or r e l a t i v e s w i th cancer p r i o r to i t s d iagnos i s i n t h e i r own fam i l y u n i t , a heightened awareness of cancer involvement was a fea tu re of the s o c i a l networks f o r a l l of these f a m i l i e s . Several f a m i l i e s c la imed tha t those who a l s o had personal involvement were much more a t ease i n d i s c u s s i n g cancer than were those who had no t . MC: The people t ha t are i n v o l v e d i n t h i s , we can t a l k about i t qu i t e f r e e l y . R: The people who have some con tac t w i th cancer themselves? MC: Yeah. Qui te f r e e l y . But i t seems to be uh. . .Now um [name] was 7 3 , [another name], h e ' s 72 . They drop around he re . No h e s i t a t i o n . . . y o u k n o w . . . t a l k about i t . Um. . . [another name], 8 8 . . . 8 4 and [another name] . . . they come i n . . . a n d s t u f f l i k e t h i s . . . t a l k e d about i t q u i t e f r e e l y . I t ' s the younger p e o p l e . . . t h e s o r t o f . . . ( p a u s e ) Well i f t hey ' ve got somebody i nvo l ved i n i t , y e s , t h e y ' l l t a l k about i t . But they won ' t uh. . .maybe they don ' t know how to come a long and s a y . . . w e l l , l i k e , I mean the guys i n the shop say , " J e e z e , y o u ' r e sure g e t t i n g your c o l o r b a c k . . . y o u r h a i r ' s come b a c k . . . y o u ' r e sure l o o k i n g g r e a t , " and s t u f f l i k e t h a t . But i t ' s the o l d e r ones. I 'd say roughly 45 on . R: mm hmm. MC: Well maybe the younger people f i g u r e t h e y ' r e encroach ing upon y o u . I f t h e y . . . l i k e i f you were t a l k i n g to them and you brought i t up , maybe they would say something. R: mm hmm. MC: But I mean you c a n ' t go around and t a l k about i t a l l the bloody t ime . But anybody tha t i s i n v o l v e d w i th somebody doesn ' t seem to have any problem t a l k i n g about i t . They a l s o found tha t acquaintances who had had cancer exper iences sought them out more f requen t l y than b e f o r e . FC: But u h . . . I ' v e found s i nce I have been diagnosed as cancer tha t she comes around f a r more o f ten than she used t o . In s p i t e of t h i s apparent bond between those who shared s i m i l a r e x p e r i e n c e s , none of the f a m i l i e s i n t h i s study had p a r t i c i p a t e d , or in tended to p a r t i c i p a t e , i n the cancer support groups a v a i l a b l e to them. FC: L i k e I don ' t th ink i t ' s going to be too he lp fu l i f we were to go to those um.. .meet ings they have f o r cance r . You hear a l l about these other cases a n d . . . l i k e u h . . . y o u cou ld f ee l b e t t e r a f t e r i t I suppose, but u h . . . e v e r y b o d y ' s d i f f e r e n t l i k e [doc to r ] s a y s . Everyone 's case i s d i f f e r e n t . Al though none of the f a m i l i e s b e l i e v e d tha t such ove r t at tempts to compare t h e i r exper ience w i th tha t o f o thers was appropr ia te or p r o d u c t i v e , they a l l engaged i n repeated comparisons w i th cancer p a t i e n t s and f a m i l i e s w i t h i n t h e i r own s o c i a l networks. MC: And we were t a l k i n g today 'cause I went to the doctor l a s t week. She s a y s , "How'd your t e s t s tu rn ou t? " I s a y s , "Nobody wants to see me f o r s i x months." She s a y s , "God I wish I cou ld reach tha t p l a t e a u . " She l o s t her b r e a s t , nodes, and a l l t h a t . She s a y s , "The most I ever get i s four months." MF: I have had d i s c u s s i o n s w i th people I work w i th about t h e i r fami l y member or f r i e n d who a l s o has cancer and so f a r have not encountered an i n d i v i d u a l who has been sub jec ted to what Mom was. FC: [Son] t e l l s me about h i s young f r i e n d , you know, and u h . . . I was t a l k i n g to [another f r i e n d ] about h i s f a t h e r . . . h o w i t went w i th h im. . .how come he l a s t e d such a shor t t ime . R: mm hmm. FC: But you do compare. You f i n d y o u r s e l f compar ing. The repor ted connect ions w i th o ther cancer p a t i e n t s extended f a r beyond i n d i v i d u a l s who were known to them p e r s o n a l l y . MC: Then t h e r e ' s one of the e d i t o r s . . . h i s b r o t h e r . . . h a d much the same as I h a d . . . n o t qu i t e to t ha t e x t e n t . . . b u t he l o s t pa r t o f h i s stomach too from c a n c e r , and s t u f f l i k e t h i s . U h . . . a n d [name], h i s w i f e has one of the forms of leukemia t h a t ' l l f l a r e up and d ie down and f l a r e up and d ie down. Sometimes s h e ' s qu i t e s i c k f o r maybe three or four months. Then she comes out of i t . [Another name], he l o s t h i s w i fe a f t e r f i v e years of no reoccu r rence . In s i x weeks she was dead. R: Sounds l i k e you both knew or know of an awful l o t of people who've been i n v o l v e d w i th c a n c e r . Do you f i n d tha t you know more now tha t y o u ' r e i nvo l ved w i th i t you rse l ves? F F : Well i t seems to come up more now. You hear of i t more. The exper ience desc r ibed by these f a m i l i e s was not one of i s o l a t i o n . T h e i r involvement w i th cancer seemed to open them up to a new, and perhaps symbo l i c , sense of community w i th f e l l o w t r a v e l l e r s i n the cancer expe r i ence . MC: When somebody t e l l s you you have c a n c e r , you th ink y o u ' r e the only person i n the wor ld t ha t has i t . Then you go out to p laces l i k e t ha t [ c l i n i c s ] and you r e a l i z e there are thousands have i t . . . i n a l l d i f f e r e n t k inds and shapes and s i z e s . FC: I j u s t used to hear through [husband] . I d i d n ' t . . . I knew her from see ing her at Chr is tmas p a r t i e s but t h a t ' s a l l . R: mm hmm. FC: We weren ' t c l o s e f r i e n d s or a n y t h i n g . But we h a v e . . . l i k e the lady tha t was here has had a cancer s c a r e . R: mm hmm. FC: And then we have another f r i e n d who's had a b reas t o f f . . . . MC: One's surrounded. I spoke to a l o t of them. "I have c a n c e r , I have c a n c e r . " R igh t here i n t h i s b u i l d i n g . MC: But we know of the same th ing happened to a f a m i l y . . . . A l though the cancer s t o r i e s , as d i scussed e a r l i e r , produced cons ide rab le d i s t r e s s a t t i m e s , they a l s o served as a means of r e i n f o r c i n g t h i s l a r g e r sense of community. The emergence of a new s o c i a l network w i t h i n which to exper ience everyday l i f e was a phenomenon shared by these f a m i l i e s . The s t r a t e g i e s they app l i ed to the e v o l u t i o n of a suppor t i ve network i nc luded us ing t a c t i c s to main ta in f r i e n d s h i p s , f i n d i n g ways to r ece i ve h e l p , ex tend ing he lp to o ther peop le , and making connect ions w i t h i n the rea l and symbol ic community of cancer p a t i e n t s and f a m i l i e s . 98 Managing medical care The t h i r d major theme i n the f a m i l i e s ' exp lana t i on of the impact of cancer upon t h e i r everyday l i f e r e l a t e d to the management of medical c a r e . Al though medical aspects of the exper ience were not an in tended focus of t h i s s tudy , the theme emerged as a s i g n i f i c a n t f a c t o r i n the ways i n which f a m i l i e s exp la ined and understood t h e i r expe r i ence . I t was apparent t ha t concerns a r i s i n g from the medical management of the d isease he ld the p o t e n t i a l f o r s i g n i f i c a n t impact upon the f a m i l i e s ' day- to-day l i v e s . Frequent mention was made of the impact of t reatment p r o c e s s e s , h o s p i t a l i z a t i o n s , and hea l th care personnel on the exper ience of l i v i n g w i th cance r . I t was, however, the impact of the doctor tha t was desc r ibed by a l l f a m i l i e s as being the most i n f l u e n t i a l f a c t o r . F F : I t h ink t h a t ' s another pa r t of t h i s . I f your doctor i s good you t r u s t h im. There was a need to i d e n t i f y one p h y s i c i a n as the a u t h o r i t y f i g u r e i n the medical management of t h e i r i l l n e s s . FC: I th ink you ' ve got to f o l l o w one d o c t o r . You cou ld go c razy t r y i n g to f o l l o w everybody 's ideas a n d . . . R: mm hmm FC: E s p e c i a l l y when they c o n t r a d i c t each o t h e r . You cou ld make y o u r s e l f a l o t more s i c k , you know, by f o l l o w i n g a l l these i deas FC: What can you do? L i ke you cou ld change [doc to rs ] and keep changing and make a b i g mess of i t y o u r s e l f . The power of the doctor over the l i v e s of these f a m i l i e s was exp la i ned by t h e i r b e l i e f s tha t h i s va lues c o n t r o l l e d the amount of i n fo rma t ion they would r e c e i v e , and tha t h i s i n t e r e s t i n t h e i r case determined the e f f o r t he would expend on t h e i r b e h a l f . The f i r s t s t ra tegy used by most of these f a m i l i e s to deal w i th t h i s new a u t h o r i t y i n t h e i r l i v e s was to develop a se t of c r i t e r i a upon which to eva lua te d o c t o r s . Doctors who took the i n i t i a t i v e i n o f f e r i n g exp lana t i ons were va lued by these f a m i l i e s . F F : They 'd t a l k , and t e l l me what was what, and why they were doing such . And I th ink t h a t ' s wonderful f o r people because so many people are f r i g h t e n e d . They ' re a f r a i d to ask . The exp lana t ions were f u r t h e r va lued i f they were perce ived to be honest and unders tandab le . FC: What I l i k e d about h i m . . . h e d i d n ' t hum and haw l i k e some doctors u h . . . t h e y shake t h e i r head, they c luck t h e i r tongue, t h i s k ind of s t u f f . You th ink "Oh my God" . B u t , you know, he was r i g h t to the p o i n t . And I l i k e tha t k i n d . FF : They don ' t seem to r e a l i z e t ha t the p a t i e n t and the f am i l y need to know what 's r e a l l y happening. I f the doc to r e x p l a i n s tha t what he i s about to say i s on ly h i s educated o p i n i o n , not t o t a l l y subs tan t i a t ed by c o l d , hard f a c t s , and i t tu rns out wrong l a t e r , i t doesn ' t ma t te r . He 's not going to be sued f o r be ing wrong but h e ' l l be respec ted f o r be ing honest and , more i m p o r t a n t l y , h e ' l l be t r u s t e d by the p a t i e n t and the f a m i l y . Where f a m i l i e s had d i f f i c u l t y a c q u i r i n g the in fo rmat ion they d e s i r e d , they exper ienced cons ide rab le d i s t r e s s , as ev idenced by t h i s excerp t from one of the l e t t e r s to the resea rche r : MF: She asked the s p e c i a l i s t to draw her a p i c t u r e of the areas engu l fed i n cancer and how tha t a f f e c t e d her back. He p i cked up a scrap p iece of paper from the t a b l e and drew a p i c t u r e . Mom asked i f she cou ld keep the p i c t u r e . The s p e c i a l i s t s a i d no as he had w r i t t e n on one of her r e c o r d s . Crap! - t ha t was a scrap p iece of paper! Through t h i s whole charade i t appeared the s p e c i a l i s t was so wor r ied about h i s r ea r end he would not g ive a s t r a i g h t answer. Any ques t ion which was asked was g iven a general answer which cou ld have a p p l i e d to h a l f the popu la t i on w i th cance r . I t i s i n c r e d i b l e to my way o f t h i n k i n g tha t the medical p r o f e s s i o n a l s can opera te i n such a manner. 1 0 0 In such instances, t h e i r evaluation of the situation lead to the conclusion that the doctors lacked essential s k i l l s . FC: Well I think you're very much aware that certain doctors are not good communicators. R: mm hmm FC: They um...certain of them, they're very knowledgeable in th e i r f i e l d , but uh...they...1 don't know i f i t ' s they assume, or they j u s t . . . i t ' s the type of personality...but they're not prepared. They figure "Well I told you t h i s . This i s the way i t ' l l be and no questions asked." FC: When you get a doctor that i s very communicative...and you understand what i s going on, you're better able to cope. Not only you, but the r e l a t i v e s . And i t ' s more...as I said to you...it's often perhaps more important that they understand. Because uh...it's much more helpful uh...I wouldn't want anybody fawning over me and feeling sorry for me etcetera. Um...and s t r i c t l y because they didn't know what i t was a l l about. R: mm hmm FC: So that i s why I feel communication i s so t e r r i b l y important in t h i s . R: And i t ' s s p e c i f i c a l l y being open to your questions and providing you with information? Those two things? FC: Indeed. Indeed. FF: And they speak in your language. They don't use a l l the i r terminology...they break i t down to what you can understand... which i s , I think, very helpful. The degree of interest a doctor showed was the second c r i t e r i o n with which families evaluated t h e i r physicians. For many families, t h i s degree of interest was inter-related with information giving. R: So a l o t about helping people get healthy isn't just having the technical competence to deal with whatever chemical process i s going on, but i t also has to do with helping the patient have information and attitudes that are going to help them get better as well? 1 0 1 FF: Well t h i s i s i t ! FC: Well you know the fear of the unknown...as they refer to, and uh...I know from my discussions with [doctors] that there's no cure for uh...breast cancer as yet, but uh...there are many things they have to treat i t . And uh...I mean...so I mean that gives me confidence in him that he's not going to give up too quickly, and uh...therefore, I certainly am not. Since most families perceived that they did not have the expertise to evaluate doctors on the technical aspects of t h e i r competence, they tended to assume doctors were equally competent, and that this competence would be applied to their case i f the doctor was interested. This interest was measured in terms of the attention that doctor paid to social interaction with the families. FC: He has been really...you know...really good...at v i s i t i n g in the hospital and...he was r e a l l y good at [name of h o s p i t a l ] . He was there everyday to see me. MF: Where the lady in the next bed, her doctor didn't come in at a l l . FC: Yeah. He hardly ever came to v i s i t her...and uh...you know... i t was good to see [my doctor] there... R: mm hmm FC: Everyday and that...and interested in how you were doing. MC: And I'd say between [ a l l the members of the oncology team], they were concerned about me. It wasn't just...'cause during my times in ho s p i t a l , I saw a l o t of nonchalant doctors attitudes. And some of the nurses too. It was also measured in terms of empathy and a c c e s s i b i l i t y . FF: [Doctor] came out and he was very nice to me. He was the most consulting doctor there i s . MC: There i s the b i g t h i n g . . . t h a t [my d o c t o r ' s ] a c c e s s i b l e . He s a i d "I d o n ' t want to see you f o r s i x months, but i f you th ink you ' ve got a prob lem, phone me. R: mm hmm MC: Th is i s the b i g t h i n g . Not Goodbye. G e t - t h e - h e l l - o u t - o f - h e r e a t t i t u d e . F F : But then [our Doctor ] has a c o n s o l i n g . . . h e ' s a d o c t o r . . . h e ' s u h . . . i t can go on the tape and he can l i s t e n to t h a t . . . t h a t h e ' s . . . h e ' s got p e r s o n a l i t y . R: mm hmm F F : He's unde rs tand ing . . . and i f anybody g ives him a rough t ime , t h e r e ' s something wrong w i th them, because h e ' s a doctor t h a t anybody cou ld have. He seems to be a doctor t ha t has a f e e l i n g f o r peop le . Absence of these s k i l l s seemed to i n v a l i d a t e any competence a doctor might have. F F : Now t h e r e ' s one doctor i s [named d o c t o r ] . He wou ldn ' t be too good f o r me or any o ther p a t i e n t because h e ' s too i n a h u f f y . And t h e r e ' s a n o t h e r . . . t h e r e ' s another d o c t o r . . . I ' m not c a l l i n g a l l d o c t o r s . . . b u t t h e r e ' s a doc tor I h a d . . . h e was jumpy. R: mm hmm F F : And you c a n ' t have a jumpy d o c t o r . You know what I mean? The s i g n i f i c a n c e of the d o c t o r ' s communication and h i s i n t e r e s t i n the f a m i l y ' s everyday l i f e was r e f l e c t e d i n the f o l l o w i n g two examples: FC: I th ink i t ' s [my d o c t o r ' s ] a t t i t u d e tha t takes away any hope tha t we cou ld have. L i ke u h . . . h e seems to be one tha t does g ive you a l l the b lack s i d e . . . o r you know, l i k e he j u s t won' t g ive you any hope. He, j u s t seems to u m . . . i f you do t r y to get some hope through h im, he j u s t thrashes i t a l l down. FC: I wonder, though, i f he has bothered r e a l l y to look a t these c h a r t s . He 's a very busy person and I wonder i f h e ' s bothered to look a t my r e p o r t s . Thus i t was the exper ience of these f a m i l i e s tha t conf idence i n one doc tor was e s s e n t i a l , and tha t t h i s conf idence depended upon the degree to which the doctor seemed i n t e r e s t e d i n t h e i r case and was w i l l i n g to p rov ide the in fo rmat ion they r e q u i r e d . Where i n t e r e s t and in fo rmat ion were not generated by the doctors themse lves , f a m i l i e s evo lved a number of s t r a t e g i c approaches toward r e c t i f y i n g the s i t u a t i o n . A l l f a m i l i e s spoke of t h e i r d e s i r e f o r i n f o r m a t i o n , a l though the nature and ex tent of t ha t d e s i r e v a r i e d c o n s i d e r a b l y . MC: I'm a very cu r i ous person R: mm hmm MC: I want to k n o w . . . t h i s i s my body. R: mm hmm MC: I want to know what 's happening to i t . I f I have a m a l f u n c t i o n , we l l then the ma l func t i on should l e t me know what 's wrong w i th m e . . . FC: I don ' t l i k e to ask too many q u e s t i o n s . I th ink I . . . a c t u a l l y I th ink the l e s s you know the b e t t e r . You c a n ' t stop w o r r y i n g , S a l l y , i f you know too much, you know. Maybe I'm wrong, but t h a t ' s the way I look at i t . « Some f a m i l i e s desc r ibed a s s e r t i v e n e s s as a s t r a t e g i c approach to o b t a i n i n g i n f o r m a t i o n . MC: They would happen to meet him i n the h a l l on the way down to see me or something l i k e t h i s and "how's th ings going today wi th my f a t h e r " and s t u f f l i k e t h i s . And i f he t o l d them some th ings t ha t t h e y ^ d i d n ' t th ink j i v e d when they saw me. . .back down the h a l l t h e y ' d go. MC: I t ' s the o l d t h i n g tha t the squeaky wheel gets the g rease . R: T h a t ' s what you f e l t ? MC: Yeah. And i f you don ' t put up a b i t of a b i t c h , you don ' t get n o t h i n g . . . i n l o t s of c a s e s . Search ing out a l t e r n a t i v e sources of the d o c t o r ' s p r i v i l e g e d in fo rmat ion was a l s o ment ioned. MC: I don ' t say I 've got a g rea t amount of knowledge, but I s o r t of have an idea what to ask and what to look f o r . And i f I don ' t get an answer from one, I get i t from another . And I mean, you would s o r t of co t ton on to one nurse who was more app rec iab le to you and would answer your ques t ions and other ones would s o r t of snuf f you o f f . You can sense t h i s . And uh. . .same as a l o t of r e s i d e n t s . The same way. Severa l f a m i l i e s repor ted tha t they had taken the i n i t i a t i v e to d i r e c t the doc tor toward the type of i n fo rmat ion they r e q u i r e d . MC: Well t h a t ' s one t h i ng I app rec ia te about [my doc tor ] i s tha t h e ' s very s t r a i g h t f o r w a r d . Well I s a i d to him "Hey, I d o n ' t want you to h ide anyth ing from me. I want you to t e l l me e x a c t l y as i t i s . And I want to know" I says " ' c a u s e I'm not scared about i t . I'm n o t , you know. . . I 'm not upse t . " And so h e ' s been very s t r a i g h t f o r w a r d w i th me. I f ee l anyway. I r e a l l y do. One f am i l y pe rc ieved agg ress i ve a c t i o n to be appropr ia te when a doctor was not pe rce ived to be concerned enough about t h e i r c a r e . F F : Some have i n t e r e s t . Some haven ' t got i n t e r e s t . Some have to be abused. Beyond these approaches, a s t ra tegy common to a l l f a m i l i e s i n t h i s study emerged as they desc r ibed t h e i r e f f o r t s to humanize the doc to r . Where the doctor was not pe rce ived as f u l f i l l i n g h i s r o l e e f f e c t i v e l y , many f a m i l i e s attempted to understand the doc tor as a f e l l o w human b e i n g . FC: I th ink i n h i s own way t h e . . . t h e n igh t he came to v i s i t me i n the h o s p i t a l a t m i d n i g h t . . . I th ink he was t r y i n g to t e l l me i n h i s own way tha t I w a s . . . h e kept repea t ing tha t I am a very s i c k woman... R: mm hmm FC: . . . a n d I d o n ' t seem to r e a l i z e i t . And I s a i d "Wel l I do r e a l i z e i t . What do you mean I don ' t r e a l i z e i t ? I know I am." And u h . . . b u t maybe i n h i s own way he was t r y i n g to t e l l 105 me to go out of the h o s p i t a l now wh i l e you get the chance. F F : Doctors get c a n c e r . . . q u i t e a few of them. MC: W e l l , t h e y ' r e around cancer p a t i e n t s . I d o n ' t wonder. They ' re not exempt no more'n we a r e . People tha t looks a f t e r i t are no more exempt than we a r e . F F : Well there must be qu i t e a few up i n Pen t i c t on t h e n , because [named doc to r ] got i t . And t h e r e ' s another doc to r i n Naramata. I d i d n ' t know him. MC: I 've know doctors t ha t passed away w i th sugar d i a b e t e s , w i th cancer a l s o , and w i th hear t t r o u b l e s . Oh y e s , they have the same t r o u b l e s as everybody e l s e . When pe rce ived as o rd ina ry m o r t a l s , doc tors were permi t ted to be f a l l i b l e . MC: And my f i r s t ques t ion was " I f I don ' t take any t reatment f o r my c a n c e r , how long w i l l I l i v e ? " R: mm hmm MC: Now I th ink he gave me a l o t of B . S . (Vhuck le ) . He t o l d me two months. And the other doctors t o l d me a y e a r . R: What do you make of tha t? MC: I th ink h e ' s j u s t t r y i n g to f r i g h t e n me. Accep t ing the doctor as a f a l l i b l e being d i d not erode any conf idence they f e l t i n h i s a b i l i t y . Ra the r , i t helped f a m i l i e s rega in some sense of c o n t r o l over t h e i r own medical management. MC: But h e r e ' s what I f i g u r e d out t o o . Now no matter how good a nurse i s , no matter how good a doctor i s , no matter how good a h o s p i t a l i s . . . i f you don ' t help the doctor and your nurses and your su r round ing , you c a n ' t . . . t h e y c a n ' t help y o u . Nobody can help a wa l l , 'cause i t has no sound. You know what I mean? Humanizing the doc tor a l s o i nc l uded r e c o g n i z i n g tha t doc to rs were sub jec t to personal i n s e c u r i t i e s . In l i g h t o f t h i s , severa l f a m i l i e s mentioned s t r a t e g i e s to enhance the r e l a t i o n s h i p by comfor t ing the doc to r . MC: I t takes a l i t t l e wh i l e to get to know him ( c h u c k l e ) . But some people j u s t don ' t l i k e h im . . . you k n o w . . . f o r t ha t r e a s o n . . . h i s p e r s o n a l i t y . But I can get a long w i th most everbody. You know I k i d him and we get a long rea l good. MC: I s a i d " O . K . , come on . Where to go from here?" He looked a t me and he says " W e l l . . . I heard y o u ' r e p r e t t y f o r t h r i g h t . " I says " t h a t ' s r i g h t . I want you to be f o r t h r i g h t w i th me. I mean how bad i s i t ? " He says " W e l l " he s a y s , " the type of lymphoma you ' ve got" he says " i s deadly s e r i o u s . " I s a i d " F i n e . W e ' l l take i t from t h e r e . " He sa t back. He says "Well thank y o u . " And t h a t ' s the way we've p layed i t . I mean I haven ' t t r i e d to con h im, he h a s n ' t t r i e d to con me. The s t ra tegy of ex tend ing themselves toward hea l th care p rov ide rs was employed by most of the f a m i l i e s who p a r t i c i p a t e d i n t h i s s tudy . R: You were say ing e a r l i e r t ha t you thought perhaps your a t t i t u d e when you went . . .when you approached these medical people had something to do wi th how we l l you were t r e a t e d . FC: I th ink s o . I th ink s o . R: How does t ha t work? FC: W e l l , you know. . . I th ink you g o . . . i f you go i n w i th the u h . . . s o r t o f f r i e n d l y a t t i t u d e a n d . . . y o u know a l l . . . n o t "poor o l d me," and y o u ' r e s o r t of f e e l i n g so r ry f o r y o u r s e l f and t h a t . . . u m . . . y o u see those k i nd of peop le . And I no t i ce t ha t when some p r o f e s s i o n a l s are working w i th them, you know, they s o r t of do the t h i ng and t h a t ' s i t . But u h . . . I ' v e found i f y o u ' r e f r i e n d l y and y o u ' r e . . . a s k them how they a r e . What the heck, eh? They ' re human. They h a v e . . . y o u k n o w . . . p r o b l e m s . . . medical problems a n d . . . a n d va r i ous o ther k i n d s . Don ' t get i t . . . y o u know i t ' s a l l inward . I t ' s not "me, me, me," i t ' s . . . y o u know. And I th ink people respond to t h a t . MC: At the same t i m e , a l though I was s i c k , there was a l o t of people tha t were a l o t s i c k e r and needed more c a r e . So I gave them m y . . . t h e t ime tha t they would spend w i th me to deal w i th people tha t r e a l l y were s i c k . R: mm hmm MC: And y e t sometimes I was r e a l l y s i c k . I d i d n ' t l e t them know. So you see you can compromise w i th people t h a t ' s concerned. Very much s o . Y e s , there i s such a t h i ng as meeting them on equal f o o t i n g . . . r e a l i z i n g and understanding tha t they have t h e i r job to do, and do not waste thei r time because t h e i r time i s precious. R: So i f you treat the nurses and doctors that way... MC: In turn you get your reward j u s t the same. They do as much for you in turn, unknowing to you that they did i t already and are doing i t . FC: I had to go over to the cancer c l i n i c . Uh...these ambulance drivers and that, they were the most marvelous helpful people, and t h i s has been...uh...a great strength. When you show that you want to be helped then...and your attitude i s such...uh... I have not in a l l t h i s time met up with one person...technical, medical, whatever...that hasn't been overly he l p f u l . And I just can't say enough about these people. Thus families cared for the health care providers as a means of f a c i l i t a t i n g the kinds of care they in turn hoped to receive. In general, the families stressed that the perceived quality of medical management had s i g n i f i c a n t impact upon th e i r everyday l i v e s . Much of t h i s perceived quality was represented in the personal style of the doctor they, viewed as i n charge of t h e i r care. They evaluated the i r doctor largely in terms of the information he shared and his expressed interest in t h e i r case. Where doctors f a i l e d to measure up to these c r i t e r i a , strategic approaches were employed: a variety of assertive overtures were made in the e f f o r t to acquire information; the actions of doctors and other health care personnel were explained i n the context of human inadequacies; and f i n a l l y , understanding and support were extended to the health care providers. These strategies f a c i l i t a t e d valued behaviors in those individuals whom the families had entrusted with t h e i r medical management. Generat ing hope The f i n a l theme i n the f a m i l i e s ' accounts of s t r a t e g i c approaches t h a t exp la i ned c a n c e r ' s impact upon t h e i r l i v e s was tha t of genera t ing an understanding of the i l l n e s s , which o f f e r e d a measure of hope. Two general s t r a t e g i c approaches w i l l be d i scussed i n t h i s con tex t : demys t i f y ing cancer and f i n d i n g something to have f a i t h i n . Demyst i f y ing cancer was a general s t r a tegy t ha t i nc l uded a v a r i e t y o f ways to min imize the f e a r exper ienced by f a m i l i e s . Fear was s t r ong l y a s s o c i a t e d , accord ing to these f a m i l i e s , w i th the worry and s e l f - p i t y d i scussed e a r l i e r i n t h i s chap te r . F a m i l i e s viewed f e a r as the a n t i t h e s i s to hope, thus conquer ing f ea r was an important goal f o r a l l p a r t i c i p a n t s . F a m i l i e s i n t h i s study were we l l aware of the f e a r a s s o c i a t e d wi th the word " cance r " i n t h e i r s o c i e t y . FC: I t ' s been a f e a r f u l word, you know, the name ' c a n c e r ' , you know. E v e r y b o d y . . . a s a matter of f a c t there are many they won ' t even vo ice the word, you know. FC: What I have found , a l l the w a y . . . f i r s t l y , people are t e r r i f i e d of the word. I t ' s j u s t . . . t h e y t a l k . . . t h e y get a r o u n d . . . eve ry th ing but use the word. FC: People are r e l u c t a n t to even use the word. I t ' s u h . . . j u s t s t r i k e s f e a r i n t o the hear ts of so many peop le . And as I s a y , i t ' s a l o t o f i gno rance . Most of the f a m i l i e s c la imed tha t us ing the word " c a n c e r , " and encouraging i t s use among t h e i r f r i e n d s was a use fu l f e a r - r e d u c i n g t a c t i c . R: So you ' ve used tha t w o r d . . . " c a n c e r " i n d e s c r i b i n g i t ? FC: Oh y e a h . Su re . F F : Oh we don ' t f l i n c h from i t . . . w h e n you t h i n k , by God, i t ' s j u s t another word. FC: T h a t ' s r i g h t . I t appears tha t c a l l i n g the "enemy" by name was a va luab le demys t i f y ing s t r a t e g y . A second s t ra tegy employed f o r t h i s purpose was tha t of a c q u i r i n g i n fo rma t ion from a l t e r n a t i v e and n o n - t r a d i t i o n a l sou rces . Hype rv i g i l ance to p o t e n t i a l i n fo rma t ion sources was ev iden t i n a l l of the f a m i l i e s . Use of con tac ts w i th o ther cancer p a t i e n t s and the use of cancer s t o r i e s have a l ready been d i scussed i n t h i s c o n t e x t . As w e l l , most f a m i l i e s used the oppor tun i t y of the research i n t e r v i e w to ask t h i s w r i t e r f o r her ideas and op in ions about cancer and i t s t rea tmen ts . These requests requ i red the resea rche r to r e f e r f a m i l i e s to app rop r ia te members of t h e i r hea l th care team, and such r e f e r r a l s were gene ra l l y r ece i ved w i th enthusiasm at d i s c o v e r i n g an a d d i t i o n a l i n fo rma t ion sou rce . Books and a r t i c l e s were a l s o mentioned as f requent sources of va l uab le i n f o r m a t i o n . F F : Now chemo we know about because we read the book. R: mm hmm F F : And we have the book he re . But i n the o ther [ i . e . , r a d i a t i o n ] we d o n ' t know a t h i ng about i t . . . y e t . F F : See a l l these u h . . . C h a t e l a i n e magazines here? R: mm hmm F F : Why I keep them i s because i t ' s g o t . . . u m . . . m e d i c a l i n i t . o Severa l f a m i l i e s acqu i red i n fo rma t ion about cancer from t e l e v i s i o n programs. F F : But u h . . . I th ink tha t u h . . . t h a t people are g e t t i n g and l e a r n i n g more a l l the t i m e . . . a n d read ing more. And i f people are a t home watching t h e i r T . V . . . w h i c h a l o t d o . . . t h e r e ' s a l o t of doc tors a n d . . . a n d s c i e n t i s t s come on the a i r . And t h e r e ' s a l o t of good conve rsa t i ons go on . R: mm hmm F F : And I t h i n k , m y s e l f , i f y o u . . . i f you are a T . V . . . I ' m n o t . . . n o t i n the d a y t i m e . . . b u t u h . . . y o u can get a l o t of help t h e r e . These a l t e r n a t i v e i n fo rma t ion sources helped to demyst i fy cancer by c o n s i d e r i n g i t i n con tex ts ex te rna l to the e x c l u s i v e realm of med ic ine . F F : He 's a g rea t reader of t h i n g s . MC: Oh y e a h . F F : He wants to know eve ry th ing about e v e r y t h i n g . 'Course I'm the same way. I never take a p i l l o r l i q u i d w i thout knowing what the contents a r e . MC: I'm t r y i n g to cure myse l f w i th g a r l i c . R: I t sounds l i k e y o u ' r e prepared to t r y o ther k inds of remedies to ease up your symptoms than t h i ngs the doc tor g i ves y o u . MC: Oh my. I'm going to t r y any th i ng . S e e . . . 1 i s t e n . I ' l l show you some o ther a r t i c l e t ha t I 've go t . . .whe re a f e l l o w from North Vancouver went to A r i zona and he got cu red . Thus, a l though the i n fo rma t ion acqu i red from a l t e r n a t i v e sources served a number o f pu rposes , i t gene ra l l y helped f a m i l i e s understand cancer i n a con tex t t ha t was r e l e v a n t to t h e i r cu r ren t needs and over which they he ld some c o n t r o l . In some f a m i l i e s , i n fo rma t ion was used to c o n s t r u c t an exp lana t i on f o r why they had succumbed to cancer wh i l e o thers had no t . I t appeared t ha t i n the process o f answering "Why me?" , severa l f a m i l i e s had adopted an answer t ha t was f a c t u a l l y unsound but which s u i t e d t h e i r purposes. MC: What a c t u a l l y happened was when I come down on tha t corner one day, I went to my stand and h e r e ' s a g rea t b i g gob of phlegm somebody s p i t up. I t probably was cancer phlegm. You can see when I come to th ink of i t now. . .and the germs from t h e r e . . . p l u s o ther germs, you s e e , n a t u r a l l y I con tac ted i t . Obvious to see ( c h u c k l e ) . R: So you th ink t h e r e ' s l o t s of p o s s i b l e ways y o u . . . MC: Yes there i s . Because you th ink n o w . . . a pe rson , i f h e ' s got lung c a n c e r , and h e ' s s m o k i n g . . . t h a t smoke goes i n the a i r . You ' re i n h a l i n g tha t a i r . I don ' t care who we a r e . We're t a l k i n g t a k i n g t ha t a i r i n . . . u n l e s s t h e r e ' s p u r i f i c a t i o n or d i s i n f e c t a n t i n the a i r a t the same t ime . You ' re bound to get a c e r t a i n percentage of i t . And i t may not hur t you f o r y e a r s . R: mm hmm MC: But then as soon as your system s t a r t s to run down, then i t ' l l take ho ld of y o u . Al though a l l f a m i l i e s were aware t ha t cu r ren t medical op in ion r e f u t es germ theory about c a n c e r , seve ra l chose to cons ide r contag ion as a p o s s i b i l i t y . The va lue of such a s t ra tegy l ay i n i t s a b i l i t y to demyst i fy the cance r . The hear ing of negat ive cancer s t o r i e s has been desc r ibed as having an impact on f a m i l i e s ' unders tand ing and f e a r o f the d i s e a s e . In an e f f o r t o f demyst i fy the d i s e a s e , some f a m i l i e s developed s t r a t e g i e s w i th which to r e i n t e r p r e t or i n v a l i d a t e the s t o r i e s . FC : And you d o n ' t hear the p o s i t i v e t h i ngs about i t . And u h . . . t ha t has been more or l e s s my e x p e r i e n c e . FC: You know how th ings improve so g r e a t l y i n the t e l l i n g . Others s e l e c t i v e l y at tended to on ly those s t o r i e s t ha t would help them generate hope. FC: Well I have hope t h a t . . . l i k e you hear about these o ther cases where they get u h . . . f i v e y e a r s , but you ' ve got to th ink about t h a t . [My doc to r ] never g ives me any hope. A f i n a l approach to demys t i f y ing cancer was tha t of p l a c i n g i t w i t h i n the con tex t of o ther phenomena which were more e a s i l y unders tood. In the course of c o n s t r u c t i n g t h e i r accoun ts , these f a m i l i e s v a r i o u s l y compared s e l e c t e d aspec ts of cancer to such a i lments as a r t h r i t i s , amputat ions, a l l e r g i e s , and u l c e r s . P u t t i n g cancer w i t h i n the con tex t o f o ther p rocesses served to reduce i t s a b i l i t y to produce f e a r . F F : Well I t h ink we mentioned t h i s before when you were he re . When I was young, pneumonia was a dreadfu l d i s e a s e . And before t ha t i t was sma l lpox . That was years before me a g a i n . R: mm hmm F F : And a l l these t h i n g s , t h e y . . . t h e r e ' s a t e r r i b l e f ea r b u i l t up i n peop le , and then uh. . .now a t t h i s moment, i t ' s hear t and c a n c e r . FC: The end r e s u l t i s . . . c o u l d be f a t a l , but then tha t doesn ' t matter what you have. Even , i f i t ' s u h . . . j u s t through o l d age. You w i l l e x p i r e . These comparisons were i n v a r i a b l y used to demonstrate the p o s i t i v e aspects o f having c a n c e r . FC: W e l l , i f I had my d r u t h e r s , I d ru ther have what I have than s a y . . . a hear t c o n d i t i o n . The s t r a t e g i e s used to demyst i fy cancer and reduce f e a r , t h e n , i n c l u d e d : us ing the word, a c q u i r i n g ou t s i de i n f o r m a t i o n , deve lop ing b e l i e f s about c a n c e r , r e i n t e r p r e t i n g cancer s t o r i e s , and comparing cancer to o ther phenomena. Most f a m i l i e s desc r i bed t h e i r s t r a t e g i c approaches as h i g h l y success fu l and b e l i e v e d t h a t , as a r e s u l t of having to face c a n c e r , they had conquered a f e a r common to most of s o c i e t y . FC: I t h ink the f a c t t ha t one i s a v i c t i m o f i t o r one i s a r e l a t i v e o f a v i c t i m of i t . . . u m . . . t h e r e i s l e s s f e a r , because as I s a y , i t ' s back to the same t h i n g , i t ' s uh . . . know ledge . You know more about i t . B e f o r e , you d i d n ' t know a t h i n g . You were a f r a i d to even b r i n g i t up. By reduc ing t h e i r f e a r , f a m i l i e s pe rce i ved themselves to have prepared the way f o r a c q u i r i n g a sense of hope. The f a m i l i e s employed a number o f s t r a t e g i e s toward f i n d i n g something i n which to p lace t h e i r f a i t h . The term ' f a i t h ' , generated by the f a m i l i e s themse lves , r a r e l y i m p l i e d f a i t h i n the r e l i g i o u s sense . Ra the r , i t s i g n i f i e d r e a l i t y - b a s e d b e l i e f s upon which they cou ld p lace a measure of hope. A l l of the f a m i l i e s spoke of f a c i n g r e a l i t y and acceptance as e s s e n t i a l requirements f o r b u i l d i n g t h i s f a i t h . MC: You've go t ta face up to the f a c t s , and t h e r e ' s no po in t i n t r y i n g t o . . . p a r d o n me. . . b u l l s h i t your way th rough. You've go t ta face up to the f a c t s a n d . . . O . K . , through a l l our l i v e s we've go t ta make d e c i s i o n s , we've go t ta make p l a n s , and sometimes you blow them. But don ' t tu rn round and go and get smashed out o f your mind or put a gun to your bloody head. T h a t ' s no s o l u t i o n . Face the f a c t tha t you j u s t p ick up the b i t s and p i e c e s . FF : Acceptance. Mm hmm. We d o n ' t p re tend , you know, t h i s i s n o t h i n g . Th is i s not y o u r . . . w h a t y o u ' r e read ing i n a book. R: mm hmm F F : Th is i s r e a l i t y and you have to accept i t . Acceptance had to do w i th acknowledging cancer as a par t of l i v i n g . R: But y o u ' r e say ing tha t t h e r e ' s a . . . k i n d of an o v e r r i d i n g f e e l i n g o f accep tance , o f c a l m . . . t h a t k i n d o f ove r r i des those o ther ups and downs? MC: Oh y e a h . Oh f o r s u r e . For s u r e . 114 F F : And you c a n ' t r e a l l y e x p l a i n i t e i t h e r . MC: No. I t ' s j u s t something tha t you have, and accept i t , and , you know, you l i v e w i th i t . I t ' s one of those t h i n g s . FC: At l e a s t our f a m i l y ' s a l l grown a n d . . . y o u know. . . thank God f o r t h a t . They 've a l l gone . . . on t h e i r own and the baby 's 25 or h e ' s . . . t h e y ' v e made i t , eh? MF: I t ' s someth ing . . . ano the r phase of l i f e . R: mm hmm MF: A par t of l i v i n g . For severa l f a m i l i e s , acceptance a l s o had to do w i th acknowledging the i n e v i t a b i l i t y of dea th . FC: The good Lord i s going to l e t you s tay as long a s . . . i t ' s His d e c i s i o n i s n ' t i t . MC: As I s a y , I face every day not as "Oh t h i s i s the l a s t . . . o n e of my l a s t days" type of t h i n g . I face i t w i th " I f the L o r d ' s gonna keep me here - f i n e . I f He wants to take me home, then t h a t ' s gonna happen. Um.. . I d o n ' t want to be f l i p p a n t about i t or a n y t h i n g . I j u s t f ee l t ha t way, and t h a t ' s the t r u s t I have. And u h . . . I th ink i t ' s so important t ha t you have something l i k e t h i s to grasp on to , 'cause human-wise, what can you do? You've got the c a n c e r , and i t ' s t h e r e , and i t ' s going to happen to y o u . The Lord u h . . . c a n heal you i n a very mighty wonderful way, and i f i t ' s H is w i l l to be healed then I ' l l be h e a l e d . MC: So my t ime c o m e s . . . w e l l . g lo ry ! You know what? Death i s the g rea tes t cha l l enge to any person l i v i n g . T h a t ' s the g rea tes t cha l l enge i n the whole w o r l d , no matter what you ' ve done, because our t ime span i s the snap of a f i n g e r . T h a t ' s a l l i t i s . So the g rea tes t cha l l enge i s what 's beyond dea th . We're not going to f l o a t i n t h i s u h . . . c o s m i c u h . . . a r e a of ours f o r ten t r i l l i o n years before Judgement Day. And I'm cu r i ous about t h a t . So when my t ime comes, I'm going to d ie w i th a smi le on my f a c e . I r e a l l y am. Fac ing and accep t ing r e a l i t y , however, were on ly the beg inn ing po in t s from which to b u i l d f a i t h and f e e l hope. A l l f a m i l i e s pe rce ived acceptance as negat ive or d e f e a t i s t i f i t d i d not a l s o i nc l ude the d e s i r e to " f i g h t . " MC: L i f e i s . . . f r o m the t ime you were born f r om. . . you leave the womb ' t i l l the t ime you h i t the grave which i s your d e s t i n a t i o n , you got your des t i ny which we a l l go t h r o u g h . . . i s noth ing but a s t r u g g l e . T h a t ' s a l l i t ' s been from the fe tus on and i t ' s not going to be d i f f e r e n t now. No matter who we a r e . We go t ta l e a r n to accept f a c t s and l i f e as i t i s g iven to us and as i t g o e s . . . a s we l i v e through i t . I f we d o n ' t , we don ' t make t h i s wor ld very l o n g . And tha t goes f o r 95 percent of the popu la t i on of t h i s e a r t h , not f o r one or two. MC: T h a t ' s the b i g crux of i t . . . y o u ' r e not gonna be beat down. You ' re gonna f i g h t and f i g h t and f i g h t and f i g h t . Whether you f i g h t p h y s i c a l l y or you f i g h t m e n t a l l y . . . o r j o i n t l y t oge the r . Many f a m i l i e s a r t i c u l a t e d the b e l i e f t ha t a f i g h t i n g s t ra tegy d i d have the p o t e n t i a l to postpone dea th . R: So you had two f r i e n d s , t h e n , t ha t d ied of cancer before you got i t ? MC: T h a t ' s r i g h t . Because they would not f i g h t f o r t h e i r o w n . . . u n t i l i t got too l a t e . MC: I f they f i g h t f o r themse lves , i t might be a g rea t hope. But i f they don ' t f i g h t f o r themse lves , t h e r e ' s no hope. The re ' s nobody . . .nobody 's genius and can put l i f e i n t o something t h a t ' s a l ready go ing . Several a l s o suggested tha t i f f i g h t i n g d i d not postpone dea th , i t would s t i l l improve the q u a l i t y of the l i f e t ha t remained. MC: I s a i d to [my doc to r ] the o ther day " Y o u ' r e going to have me f o r a p a t i e n t f o r a l o n g , long t ime" I s a i d " I 'm not g i v i n g up v o l u n t a r i l y . Don ' t k i d y o u r s e l f . " FC : They say t ha t i t can be beaten and u h . . . I guess I'm stubborn enough and s t r o n g - w i l l e d e n o u g h . . . R: (chuck le) FC : I f i g u r e d i f i t ' s going to get me, I ' l l t e l l you i t ' s g o n n a . . . I'm gonna put up an aw fu l l y s t rong f i g h t . R: And y o u ' r e going to enjoy y o u r s e l f i n the p r o c e s s , i t l ooks l i k e . FC: And y o u ' d b e t t e r b e l i e v e i t . Thus accep tance , combined w i th the w i l l to f i g h t , were pe rce ived as e s s e n t i a l elements i n the f a m i l i e s ' genera t ion of hope through f a i t h i n t h e i r own a b i l i t i e s to con f ron t and impact upon cance r . A l l f a m i l i e s a l s o expressed the need to have f a i t h i n something o ther than themselves and t h e i r own c a p a c i t i e s to f i g h t the cance r . Most admi t ted to a f a i t h t ha t medical sc ience would f i n d a cure f o r cancer i n the near f u t u r e . F F : You know, every yea r they come up w i th something a l i t t l e b e t t e r . F F : I have grea t f a i t h t ha t t h e y ' l l come up w i th u h . . . a new d rug . T h e y ' l l get i t one of these d a y s . . . v e r y s h o r t l y . MF: And I p e r s o n a l l y th ink tha t on the b a s i s of what t hey ' ve done i n the l a s t 20 yea rs i n the medical f i e l d . . . I s t r o n g l y f e e l t h a t . . . t h a t the t i m e ' s not very f a r o f f t ha t t h e y ' r e gonna come up w i th a c u r e . Many supported t h i s f a i t h by f o l l o w i n g the progress of cancer research i n the news media. FC : Thank God people are responding and u h . . . t h e y d o n ' t l ack funds f o r r e s e a r c h . . . t h a t ' s f o r s u r e , They don ' t know what to do w i th a l l the money. But there f o r t u n a t e l y i s an area where they are making great s t r i d e s . R: mm hmm FC: And t ha t Terry F o x . . . t h a t money they r a i s e d there was u n b e l i e v a b l e . And there are m i l l i o n s s t i l l i n the bank accoun t , you know. J u s t the i n t e r e s t i t ' s l e a v i n g . And u h . . . t hey ' ve turned over a m i l l i o n h e r e , a m i l l i o n there to some of these r e s e a r c h e r s . And I'm qu i t e s u r e , i n another f i v e , ten y e a r s . . . FC: Well you know you r e a d . . . I read anyth ing I see i f i t ' s something concern ing my p a r t i c u l a r area a n d . . . F F : I l i s t e n a l o t on the a i r i f I'm home . . . f o r the d i f f e r e n t . . . 'cause t hey ' ve always got somebody of i n t e r e s t on med i ca l l y and they come up w i th new s t u f f t ha t t h e y ' r e t r y i n g . A l l f a m i l i e s a l s o expressed the need to have f a i t h i n t h e i r doc to r . As has been d i scussed p r e v i o u s l y , doc tors were not n e c e s s a r i l y pe rce ived to be worthy of the f a m i l y ' s t r u s t . However, i n s p i t e of t h e i r e v a l u a t i o n s o f doc to rs as i m p e r f e c t , and i n s p i t e o f t h e i r b e l i e f s t ha t doc to rs needed coax ing to p rov ide the bes t cure p o s s i b l e , the f a m i l i e s unanimously repor ted t h e i r d e c i s i o n to p lace f a i t h i n the doc to r . MC: But as I s a y , you ' ve got to have f a i t h i n somebody, and up ' t i l l now [doc to r ] has p layed p re t t y square w i th me. MC: You go t ta have f a i t h i n people t ha t i s t r y i n g to he lp y o u . R: mm hmm. L i k e the doc to rs? MC: L i ke the d o c t o r s . R: Nurses? MC: Nurses . And c e r t a i n amount o f the m e d i c a t i o n s . FC : You've got to l i s t e n to somebody, so i t might as we l l be your d o c t o r . You got to have f a i t h i n somebody. Thus no matter how c r i t i c a l or man ipu la t i ve they were i n regard to t h e i r medical management, the need to p lace t h e i r f a i t h i n i t remained. The a c q u i s i t i o n o f f a i t h was desc r ibed as having cons ide rab le consequences i n shaping the fam i l y cancer expe r i ence . MC: The re ' s no ques t ion i n my mind about tha t a t a l l . Without f a i t h , I don ' t know how you would face problems l i k e t h i s . . . because i t i s a p r o b l e m . . . t h e r e ' s no doubt about i t . . . b u t you have to have something you c a n , you know, r e l y on . . . some th ing to hang on t o . With f a i t h , whether i t be i n themse lves , i n medical s c i e n c e , or i n t h e i r d o c t o r s , f a m i l i e s were ab le to generate the f e e l i n g of hope. F F : Where t h e r e ' s t ha t l i t t l e b i t of hope. . .where t h e r e ' s t ha t 20 or 30 percent chance t ha t the chemo therapy w i l l work, then t h a t ' s a l l I ' ve got to c l i n g to and t h a t ' s what I ho ld on t o . 'Cause tha t chance i s t h e r e . FC: At l e a s t y o u . . . y o u know. . .you cou ld hope f o r an e x t r a y e a r o r . . . y o u know R: So what y o u ' r e say ing i s , t h e r e ' s always something to hope f o r . FC: Yeah. Why not? T h e r e f o r e , the s t r a t e g i e s used by f a m i l i e s to acqu i re f a i t h i n c l u d e d : f a c i n g and accep t i ng r e a l i t y , f i g h t i n g back, and p l a c i n g t h e i r f a i t h i n medical sc ience i n g e n e r a l , and t h e i r doctor i n p a r t i c u l a r . They c l e a r l y expressed t h e i r need to have f a i t h i n something and desc r i bed how t h e i r f a i t h promoted hope. The f a c t t ha t most f a m i l i e s were ab le to f ee l hopeful most of the t ime was evidence of the success of t h e i r s t r a t e g i c approaches to demys t i f y ing cancer and f i n d i n g something to have f a i t h i n . Thus, i n e x p l a i n i n g the cancer e x p e r i e n c e , f a m i l i e s desc r i bed e labo ra te s t r a t e g i c approaches toward m in im iz ing the impact of cancer upon t h e i r everyday l i v e s . Al though a l l f a m i l i e s pe rce ived t h e i r own approach to be the most success fu l c h o i c e , many of the approaches they desc r ibed d i f f e r e d r a d i c a l l y . S ince va r i ous s t r a t e g i c approaches produced the same d e s i r e d outcome ( i . e . , the pe rcep t ion of l i v i n g a normal l i f e i n s p i t e of c a n c e r ) , t ha t outcome was not s imply a f u n c t i o n of c o r r e c t or i n c o r r e c t c h o i c e s . Ra the r , the p a r t i c i p a n t s e x p l a i n e d , i t had to do w i th the f i t between the s t r a t e g i c cho ices they made and who they were as f a m i l i e s . I n teg ra t i ng the Exper ience i n t o a L i f e Context The two p rev ious s e c t i o n s of t h i s chapter desc r ibed the f am i l y cancer exper ience i n terms of c a n c e r ' s impact upon everyday l i f e , and exp la i ned the ex ten t o f t ha t impact i n terms of s t r a t e g i e s and cho ices employed by the f a m i l i e s i n coping w i th the presence of cance r . The accounts i l l u s t r a t e d s i m i l a r i t i e s and d i f f e r e n c e s between f a m i l i e s , and a l s o c o n t r a s t i n g pe rcep t ions w i t h i n f a m i l i e s . Th i s f i n a l s e c t i o n of the f a m i l i e s ' accounts penet ra tes the t h i r d l a y e r of t ha t exp lana t i on of t h e i r cancer expe r i ence . I t i n t e g r a t e s the par ts desc r ibed p r e v i o u s l y i n t h i s c h a p t e r , and thus e x p l a i n s how f a m i l i e s make sense of the c o m p l e x i t i e s and c o n t r a d i c t i o n s inheren t i n t h e i r cancer expe r i ences . Throughout t h e i r d e s c r i p t i o n s of the impact cancer had on t h e i r l i v e s and t h e i r exp lana t i ons of the s t r a t e g i e s they had chosen i n order to moderate the impac t , f a m i l i e s repea ted ly r e f e r r e d to the s i g n i f i c a n c e of a t t i t u d e . A l l of the f a m i l i e s p a r t i c i p a t i n g i n t h i s study b e l i e v e d tha t t h e i r a t t i t u d e had been an important f a c t o r i n shaping t h e i r exper ience w i th cance r . FC: As I s a i d to you much e a r l i e r . . . w e ' r e gonna g ive i t a good f i g h t . A n d . . . a n d t h a t ' s why . . .and I keep us ing the word a t t i t u d e . R: Yes? FC: And I...I b e l i e v e t h a t ' s the key . MC: The re ' s nobody can change i t once you have i t . You have i t . . . y o u have to overcome i t by your a t t i t u d e . R: So you th ink your a t t i t u d e s about i t ' s had a l o t to d o . . . MC: A t t i t u d e of mind. Yes i t has very very much to do w i th i t . Accord ing to the f a m i l i e s , the a t t i t u d e w i th which one approached the cancer exper ience a f f e c t e d a l l f a c e t s of t ha t expe r i ence . R: Well do you th ink t h i s p o s i t i v e a t t i t u d e has anyth ing to do w i th f a c i n g r e a l i t y ? MC: Yes i t has . Because i f you th ink p o s i t i v e , y o u ' r e gonna l i v e p o s i t i v e . R: mm hmm MC: Think p o s i t i v e , l i v e p o s i t i v e , work p o s i t i v e . I f y o u ' r e gonna th ink n e g a t i v e , y o u ' r e gonna be negat ive w i t h i n y o u r s e l f . So you s e e , i t has a . . . a v e r y , very b i g f a c t o r of how f a r the p o s i t i v e t h i n k i n g goes. I t ' s more beyond than we can r e a l l y r e a l i z e . I t ' s a b i g . . . i t ' s a small word w i th a few l e t t e r s , but has an awful l o t of power. R: I t ' s a powerful pa r t o f what i t ' s a l l about . MC: I t ' s a powerful par t o f . . . p a r t of what our ac tua l b u i l d up of l i f e i s . I t very we l l i s . T h a t ' s bar none and foo l n o n e . . . even i n the u n i v e r s i t i e s . T h e i r cancer e x p e r i e n c e , they c l a i m e d , was more a f u n c t i o n of t h e i r mental a t t i t u d e than i t was a f u n c t i o n o f the ac tua l d i sease p r o c e s s . R: So i t has something to do w i th mind over m a t t e r . . . o r s t a te of mind as you say? FC : I t h ink s o . Very much s o . R: mm hmm FC: U h . . . a s a mat ter of f a c t I'm a f i r m b e l i e v e r i n i t . Most of the f a m i l i e s used the terms " p o s i t i v e " and "nega t i ve " to desc r i be a t t i t u d e s t ha t would enhance or harm f a m i l i e s i n the process of l i v i n g w i th c a n c e r . These f a m i l i e s a l l pe rce i ved t h e i r own a t t i t u d e s to be p o s i t i v e . MC: A p o s i t i v e a t t i t u d e i s c e r t a i n l y the bes t a t t i t u d e a man should have dur ing the w h o l e . . .by doing t h a t , they he lp themselves . MC: I want to be p o s i t i v e about t h i s t h i n g , you know. I want to f e e l good and I th ink t h i s i s so impor tant t ha t y o u . . .and menta l l y i s such a b i g t h i ng accep t i ng c a n c e r . I th ink m e n t a l l y . P o s i t i v e a t t i t u d e s were pe rce i ved by severa l f a m i l i e s to have a d i r e c t impact upon the ac tua l p rogress of the d i s e a s e . MC: And u h . . . i f a person t h i n k s p o s i t i v e l y , t h e r e ' s l e s s chances of con t i nu i ng c a n c e r . I t cou ld be dormant. MC: See the mind c o n t r o l s the body as we a l l know. When y c ' r e mind a i n ' t c o n t r o l l i n g your body, then y o u ' r e . . . y o u have no con t ro l over i t . These a t t i t u d e s a l s o f a c i l i t a t e d a sense o f r e s p o n s i b i l i t y and con t ro l over the e x p e r i e n c e . FC: You say "Wel l what can I do?" now you know. . . "what i s my defence to t h i s . " Severa l f a m i l i e s t a l k e d of the s i g n i f i c a n c e of p o s i t i v e a t t i t u d e s i n moderat ing the emotional impact of c a n c e r . F F : Maybe t h a t ' s one of the t h i n g s . . . w h e n I look back over the l a s t f i v e yea rs u h . . . I th ink i t ' s a l w a y s . . . w e ' v e always s o r t of s a i d "Wel l a t l e a s t i t i s n't <=o and s o . . . a t l e a s t , you know, a t l e a s t y o u ' r e f e e l i n g . . . y o u a r e n ' t s i c k w i th i t . " I t h ink we keep l o o k i n g a t the p o s i t i v e pa r t of i t and not the n e g a t i v e . P o s i t i v e a t t i t u d e s were a l s o pe rce i ved to be important i n f a c i l i t a t i n g a h igh q u a l i t y support network. FC : I f e e l um. . . the d o c t o r s , the n u r s e s , the r a d i o l o g i s t s . . . everybody I 've d e a l t w i t h . . . b e c a u s e of going i n w i th them and w i th the r i g h t a t t i t u d e , they respond i n k ind and are very s u p p o r t i v e . And um. . .peop le I work w i t h , perhaps because of t h i s same a t t i t u d e are s u p p o r t i v e . Uh.. .my fam i l y are suppor t i ve o f i t . So t h a t ' s what I mean by say ing having the r i g h t a t t i t u d e . In a d d i t i o n , p o s i t i v e a t t i t u d e s were desc r i bed as f a c i l i t a t i n g h igh q u a l i t y hea l th c a r e . R: How do you th ink t h i s p o s i t i v e a t t i t u d e makes a d i f f e r e n c e ? MC: The p o s i t i v e a t t i t u d e makes t h i s much d i f f e r e n c e tha t i t g i ves your doctor more f a i t h i n your t rea tment , i t g i ves you more unders tanding of what i t ' s a l l about , i t g i ves you be t t e r s t reng th t o . . . t o f i g h t i t , and make the bes t of what ' s l e f t . . . and i f you go , you go. R: So the p o s i t i v e a t t i t u d e r e s u l t s somehow i n hea l th care people knowing y o u , and g e t t i n g to know you be t te r? FC: E x a c t l y . E x a c t l y . And u h . . . t h e y take more i n t e r e s t i n y o u , and you walk i n and they know you by name and u h . . . t h e y can t e l l from treatment to t reatment i f you appear any b e t t e r or look any d i f f e r e n t . And um. . .which to me i s very impor tan t . I f e e l u h . . . t h e r e a g a i n , we ' re t a l k i n g about numbers versus u h . . . b e i n g an i n d i v i d u a l . And I th ink um. . . they i n f a c t do t r e a t y o u . . . o r I f e e l they t r e a t me d e f i n i t e l y as an i n d i v i d u a l . R: Yeah. And tha t comes f r o m . . . p a r t l y a t l e a s t from your a t t i t u d e ? FC: I f e e l . . . y e s , i n f a c t . R: Now t h i s a t t i t u d e ' s something tha t came from e a r l i e r exper iences i n your l i f e . Is t ha t an a t t i t u d e toward l i f e r a t h e r than an a t t i t u d e about cancer? FC: Oh i ndeed . Toward l i f e . 123 Thus most of the f a m i l i e s exp la i ned tha t t h e i r pe rcep t ions about the cancer exper ience and the s t r a t e g i e s they had used stemmed from the p o s i t i v e a t t i t u d e they h e l d . Al though the p o s i t i v e a t t i t u d e s a r t i c u l a t e d by f a m i l i e s a l l served a s i m i l a r purpose, the nature o f these a t t i t u d e s v a r i e d from fam i l y to f a m i l y . In f a c t , what one fam i l y desc r ibed as i n d i c a t i v e o f a negat ive a t t i t u d e might be perce ived by another f am i l y as p o s i t i v e . For example, wh i l e some f a m i l i e s perce ived p lann ing f o r t h e i r f u tu re to be c o n s i s t e n t w i th a p o s i t i v e a t t i t u d e toward c a n c e r , o thers argued tha t t h e i r p o s i t i v e a t t i t u d e d i r e c t e d t h e i r cho ice not to p lan ahead. F a m i l i e s ' cho i ces to express or not to express emot ions, and to d i s c u s s or not d i s c u s s c a n c e r , s i m i l a r l y arose from what they desc r ibed as t h e i r p o s i t i v e a t t i t u d e s . Thus, each f am i l y desc r ibed t h e i r unique i n t e r p r e t a t i o n of what a p o s i t i v e a t t i t u d e toward the cancer exper ience e n t a i l e d . One p a t i e n t exp la ined tha t wh i le some aspects o f p o s i t i v e a t t i t u d e s cou ld be sha red , o thers would always be d i f f e r e n t f o r each i n d i v i d u a l . MC: Not two pe rson ' s mind th ink the same. There i s not two p e r s o n ' s mind th ink the same. R: So the p o s i t i v e t h i n k i n g i s something t h a t ' s d i f f e r e n t f o r each person? MC: T h a t ' s r i g h t . Thus the a t t i t u d e s he ld by each f am i l y toward t h e i r cancer exper ience exp la i ned how they had i n t e r p r e t e d i t and approached i t . Understanding each f a m i l y ' s approach demanded unders tanding of i t s a t t i t u d e s . As f a m i l i e s c l e a r l y and empha t i ca l l y e x p l a i n e d , t h e i r a t t i t u d e s toward the cancer exper ience had something to do w i th t h e i r a t t i t u d e s toward l i f e i n g e n e r a l . MC: T h a t ' s where y o u r . . . t h a t ' s where your p o s i t i v e t h i n k i n g comes i n . I t ' s not a . . . i t ' s not something t h a t ' s u h . . . I made up. I t ' s not something tha t uh . . .anybody makes up, you know. But i f you do hear t ha t more . . . f r om o ther f a m i l i e s . . . y e a h , p o s i t i v e t h i n k i n g i s a . . . i s a dead f a c t o r . 1 R: mm hmm MC: T h a t ' s o u r . . . m o s t of our bear ing i n l i f e i s on p o s i t i v e t h i n k i n g . I t was ev iden t from the accounts of these f a m i l i e s t ha t a t t i t u d e s toward the cancer exper ience were cons t ruc ted long before i t was a c t u a l l y encountered. F F : I th ink tha t i t ' s peoples a t t i t u d e s toward themselves have a l o t to do w i th i t . R: The i r a t t i t u d e s toward themselves i n general , or i n anyth ing s p e c i f i c ? F F : In g e n e r a l . G e n e r a l . R: So how you cope w i th i t as an i n d i v i d u a l or f am i l y has something to do w i th how you ' ve l i v e d your l i f e and how you fee l about y o u r s e l f ? F F : R i g h t . R: So t h a t ' s something you lea rned long ago. And when cancer came you thought "we l l I'm going to apply t ha t same lesson here?" MC: T h a t ' s r i g h t . T h a t ' s r i g h t . I never q u i t t h i n k i n g tha t way. FC: I guess I 've gone through l i f e . T h a t ' s my a t t i t u d e towards 1 i f e . . . u m . . . t o be i n d e p e n d e n t . . . s t r o n g - w i l l e d . . . p e r h a p s stubborn you can say . But u h . . . y o u s o r t of se t goa ls and you u h . . . y o u go out of your way i n c e r t a i n areas to ach ieve these g o a l s . And u h . . . I th ink I'm us ing t h i s same s o r t of a t t i t u d e towards the cance r . Thus, they agreed , understanding t h e i r a t t i t u d e s requ i red an understanding o f who they were as f a m i l i e s and how they had l i v e d t h e i r l i v e s . One p a r t i c i p a n t termed t h i s the f a m i l y ' s " l i f e concep t . " Accord ing to h im, t h i s l i f e concept had to do w i th the b e l i e f s f a m i l i e s he ld about themselves and the p h i l o s o p h i e s w i th which they c h a r a c t e r i s t i c a l l y approached the i s s u e s tha t arose i n the course of l i v i n g . Al though the term " l i f e concept" was not used by o ther f a m i l i e s , they a l l gave c l u e s as to what t h e i r l i f e concept might i n c l u d e . The f o l l o w i n g excerp ts serve as examples of how f a m i l i e s exp la i ned who they were and how they l i v e d . MC: In t h i s wor ld you got ta be a f i g h t e r f o r e v e r y t h i n g . . . f o r l i f e , f o r n e c e s s i t i e s , f o r h e a l t h . I t ' s a f i g h t i n g w o r l d . MC: Don ' t l e t no th ing beat y o u . I mean d o n ' t s t i c k your head i n the noose, you know, or be s t u p i d and take a chance, bu t , I mean, you come up aga ins t your c h a l l e n g e s . . . y o u step back a l i t t l e b i t and say , you know u h . . . " t h i s i s not going to beat me. The re ' s no way." MC: Never th ink y o u r ' r e b e t t e r than somebody e l s e and never l e t somebody e l s e th ink t h e y ' r e b e t t e r than y o u . We're a l l equal i f we want to e q u a l i z e i t ou t . And t h a t ' s what you c a l l p o s i t i v e t h i n k i n g . R: So even the l i t t l e ones can look on the b r i g h t s i d e . That f am i l y ph i losophy seems to go r i g h t th rough. MC: Well t h a t ' s the way we've always looked a t l i f e and I guess i t ' s u h . . . w e ' v e rubbed i t . . . i t ' s rubbed o f f on the k i d s . MC: We're a b i t of d i g g e r s . R: You ' re d iggers? MC: We d o n ' t t a k e . . . u h . . .1 mean u h . . . y o u cou ld g ive us an answer, and i f we d o n ' t l i k e t ha t answer, you know, we ' re going to f i s h around f o r something u h . . . a l i t t l e b i t deeper or more c l a r i t y . As each f am i l y exp la i ned i t s approach to l i f e , i n d i v i d u a l members a t t r i b u t e d the o r i g i n s o f the approach to e a r l y exper iences they had encountered. Wartime exper iences were f r equen t l y ment ioned. R: So you had to l e a r n tha t i n order t o . . . t o su rv i ve the war , and then you d i d n ' t l o s e tha t a f t e r the war was ove r . MC: W e l l . . . t h a t ' s how you b e c o m e . . . t h a t ' s how you get s u r v i v a l . . . p o s i t i v e t h i n k i n g . MC: I mean I came to Vancouver i n 1945 out o f the Navy. I had 50$ i n my pocke t . I knew nobody i n town . . .no bloody t h i n g . And I j u s t s t a r t e d o f f from t h e r e . R: So i t ' s the same a t t i t u d e tha t got you success fu l then t h a t ' s keeping you success fu l now? MC: T h a t ' s r i g h t . E a r l y ch i l dhood exper iences were a l s o desc r i bed by many i n d i v i d u a l s i n the process of account ing f o r who they had become. FC: I was th ree when my f a t h e r l e f t . . . a n d u h . . . t h e d i r t y t h i r t i e s e t c e t e r a . And mother d i d eve ry th ing to keep us go ing . R: mm hmm FC: And we l e a r n e d , you know. And we learned tha t w i th a . . . FF : And she made sure of i t t o o . FC: One of the g rea tes t l e a r n i n g exper iences we ever had , you know. And there were th ings tha t c e r t a i n l y have he ld us i n good s tead throughout the l a t t e r yea rs when we've had some of these adverse c o n d i t i o n s . MC: I was r a i s e d by my g rand fa the r . I wasn ' t r a i s e d by my own f a m i l y . I had to l e a r n to l i v e w i th peop le , l e a r n to understand s t range t h i n g s . . . The impact of having l i v e d through the Depress ion years was an exp lana t i on common to many p a r t i c i p a n t s . MC: S e e . . . w e were Depression k i d s . Thus i n d i v i d u a l s e a s i l y accounted f o r who they were and the ways they had chosen to l i v e t h e i r l i v e s . Al though the o r i g i n s of the b e l i e f s and p h i l o s o p h i e s were desc r ibed by i n d i v i d u a l s , f a m i l i e s were a l s o ab le to desc r i be the process by which they had evo lved a f am i l y out look on l i f e . In some f a m i l i e s , members desc r i bed themselves as harmonious oppos i tes i n the way they approached l i f e . In o ther f a m i l i e s , the b e l i e f s and p h i l o s o p h i e s had become more and more u n i f i e d through the passage of t ime toge ther as a f a m i l y . R: So tha t sounds l i k e your o v e r r i d i n g ph i losophy t ha t no mat ter what t h ings happen i n l i f e , you face i t and you keep hopeful and p o s i t i v e and th ings w i l l work ou t . MF: A b s o l u t e l y . R: [ to FC] Did you s t a r t out w i th t ha t ph i losophy too? Or i s t ha t something t h a t ' s grown between the two of you over the yea rs? FC: I guess I have always thought a long tha t same.. .more so s ince I met [my husband] though. Far more s o . The r e l a t i o n s h i p between who they were and t h e i r a b i l i t y to s u c c e s s -f u l l y l i v e w i th cancer was an e s s e n t i a l element i n the account of each f am i l y i n t h i s s tudy . Accord ing to these f a m i l i e s , people who cannot cope w i th cancer are those who cannot cope w i th l i f e . MC: Well I t h ink i t ' s something y o u ' r e born w i t h , you know. I t ' s the same as a hyper person and a non-hyper pe rson . I th ink you '~~ j u s t born w i th i t . . . FF : Oh i t must be something you l e a r n a long the way, 'cause w e . . . y o u ' r e l o o k i n g a t two e n t i r e l y d i f f e r e n t p e r s o n a l i t i e s h e r e . And ye t . . .maybe i t ' s something tha t you grow w i t h . Could t ha t be i t ? Something tha t you develop and tha t you grow wi th? I t ' s an a t t i t u d e r i g h t f r o m . . . I don ' t know. I r e a l l y never thought of i t . MC: I t ' s . . . i t ' s w i t h i n a pe rson ' s breed ing i n f a c t . I t ' s u h . . . f a t e has a l o t to do w i th i t . Surroundings has a l o t to do w i th i t . S ince they pe rce ived tha t a t t i t u d e s conducive to l i v i n g s u c c e s s f u l l y w i th cancer were the outcomes of he red i t y and/or a lengthy l e a r n i n g p r o c e s s , these f a m i l i e s were doubt fu l t ha t people who had not developed p o s i t i v e a t t i t u d e s toward l i f e cou ld acqu i re such a t t i t u d e s when conf ron ted w i th c a n c e r . F F : You c a n ' t teach them un less they want to l e a r n . R: So y o u ' r e a b e l i e v e r t ha t people l ea rn t h i n g s , and people l e a r n a t t i t u d e s . MC: They e i t h e r l e a r n the wrong way, and get h u r t , or they can s t a r t t h i n k i n g the r i g h t way and k e e p . . . k e e p go ing . R: I f you haven ' t had t ha t a t t i t u d e up u n t i l the t ime you have c a n c e r , do you b e l i e v e tha t a person cou ld l e a r n tha t a t t i t u d e ? F F : With d i f f i c u l t y , i f you ' ve not had the type of uh . . .men ta l a t t i t u d e my [ r e l a t i v e s ] had , you know. . . t he p o s i t i v e out look on i t . Thus, the f a m i l i e s exp la i ned tha t i n the f i n a l a n a l y s i s , they were the same people they had been before cancer had entered t h e i r l i v e s . Al though cancer had presented a cha l l enge g rea te r than most had ever c o n f r o n t e d , they approached the exper ience w i th the same a t t i t u d e s they had a p p l i e d to a l l o ther cha l l enges i n t h e i r l i v e s . R: You've c e r t a i n l y shared an awful l o t w i th me, and helped me to understand some of the connect ions between u h . . . y o u r b e l i e f s about the w o r l d , and l i f e and death and i l l n e s s , and how the a t t i t u d e s t ha t you have toward l i v i n g w i th c a n c e r . . . a n d how those are a l l under l y ing a l l the cho ices you ' ve made . . . the s t r a t e g i e s of how to l i v e day to day o r . . . y o u know...how you choose to make your l i f e a good l i f e . They a l l seem e x p l a i n a b l e by t h i s unde r l y i ng f a i t h and a t t i t u d e . Is t h a t . . . ? F F : mm hmm. I would d e f i n i t e l y say s o . MC: Oh t h e r e ' s no ques t ion i n my mind about t ha t a t a l l . R: You ' re say ing you f e e l ca lm . MC: T h a t ' s r i g h t . F F : mm hmm R: And tha t t h i s comes from your mental a t t i t u d e , which comes from your f a i t h . Is t ha t how i t a l l works? F F : I would th ink so . MC: Oh I 'd say s o . T h e i r pe rcep t ion t ha t the cancer exper ience had not changed t h e i r l i v e s r e f l e c t e d the degree to which t h e i r core b e l i e f s and a t t i t u d e s de f ined who they were. wh i l e they acknowledged s i g n i f i c a n t changes i n many psychosoc ia l aspects of t h e i r everyday r e a l i t i e s and had developed e labo ra te s t r a t e g i e s w i th which to approach these changes, the f a m i l i e s i n t h i s study s a i d they had not permi t ted cancer to erode the essence of t h e i r l i v e s . Ra the r , they had approached cancer as an exper ience t h a t must be woven i n t o the f a b r i c of t h e i r everyday l i v e s . By us ing t h e i r fundamental sense of themselves as a framework w i th which to understand and i n t e g r a t e t h i s new aspect of l i v i n g , the f a m i l i e s i n t h i s study made sense of t h e i r cancer e x p e r i e n c e s . Summary Th is chapter has presented the f a m i l i e s ' accounts of t h e i r exper ience of everyday l i f e when an adu l t member has cance r . In the c o n s t r u c t i o n of accoun ts , f a m i l i e s both desc r ibed and exp la i ned t h e i r expe r i ence . The accounts desc r ibed cancer as not having changed t h e i r l i v e s . Whi le cancer had an impact on t h e i r emotional s t a t e , emotional tu rmo i l was not a fea tu re of the f a m i l i e s ' everyday l i v e s . Al though cancer had requ i red r o l e s h i f t s and l o s s e s w i t h i n f a m i l i e s , t h e i r a b i l i t i e s to compensate w i th r o l e a c q u i s i t i o n s and m o d i f i c a t i o n s had prevented these changes from producing d i s r u p t i o n . The presence of cancer had a l s o generated new f e e l i n g s and f a c t s t ha t demanded communication w i t h i n and ou t s i de the f a m i l i e s . F u r t h e r , i t had cha l l enged f a m i l i e s ' p h i l o s o p h i c a l ou t looks by p resen t i ng them w i th unanswerable ques t ions and f o r c i n g them to acknowledge the m o r t a l i t y of t h e i r i l l member. Al though f a m i l i e s recogn ized numerous i ns tances i n which cancer had had s i g n i f i c a n t impac t , they r e t a i n e d the pe rcep t i on tha t t h e i r l i v e s were normal l i v e s . The a b i l i t y o f f a m i l i e s to ma in ta in the q u a l i t y o f normalcy i n the presence of a major d i s r u p t i v e i n f l u e n c e was exp la i ned by them i n d e t a i l . They perce ived the cho ices they had made i n t h e i r approach to the cancer exper ience to have min imized the p o t e n t i a l impact of the i l l n e s s . S p e c i f i c s t r a t e g i e s w i th which they adapted everyday l i f e , evo lved a network, managed t h e i r medical c a r e , and generated hope were revea led i n the process of e x p l a i n i n g the f am i l y expe r i ence . Whi le the s t r a t e g i e s i nc l uded c o n s i s t e n c i e s and i n c o n s i s t e n c i e s between f a m i l i e s , a l l f a m i l i e s pe rce i ved t h e i r own s t r a t e g i c approach to account f o r the success fu l outcome. They f u r t h e r repor ted tha t the f a c t o r t ha t exp la ined and i n t e g r a t e d the s t r u c t u r e of s t r a t e g i e s and cho ices they had developed was the a t t i t u d e w i th which they had approached cance r . They desc r ibed t h i s a t t i t u d e as i n h e r e n t l y l i n k e d to and a r i s i n g from t h e i r concepts o f themselves as f a m i l i e s and the tene ts w i th which they had cons t ruc ted t h e i r l i v e s . Th is chapter has presented the accounts of the f a m i l i e s as they were cons t ruc ted i n the process of c o l l e c t i n g and ana l yz i ng the d a t a . In Chapter 5, the major f i n d i n g s t ha t emerged from these accounts w i l l be d i s c u s s e d i n r e l a t i o n to the research l i t e r a t u r e reviewed i n Chapter 2 and eva lua ted i n the l i g h t of r e l e v a n t t h e o r e t i c a l p e r s p e c t i v e s . 132 Chapter 5 Discuss ion of the F ind ings In t roduc t ion Th is chapter w i l l d i s cuss the f i n d i n g s of the s tudy , as presented i n Chapter 4 , i n r e l a t i o n to the view of o ther t h e o r i s t s and the f i n d i n g s of o ther r e s e a r c h e r s . The purpose of such a d i s c u s s i o n i s to i l l u s t r a t e how cu r ren t knowledge of the f am i l y cancer exper ience can be enhanced by e l i c i t i n g the f a m i l y ' s p e r s p e c t i v e . The research l i t e r a t u r e reviewed i n Chapter 2 e s t a b l i s h e d tha t s tud ies s p e c i f i c a l l y address ing the f am i l y cancer exper ience were scant and i n c o n c l u s i v e . The vas t body of t h e o r e t i c a l l i t e r a t u r e , a l s o desc r ibed in Chapter 2, y i e l d e d a sketch of c u r r e n t b e l i e f s about what the fam i l y cancer exper ience e n t a i l s . S ince the f i n d i n g s of t h i s study i nc lude themes tha t d i d not a r i s e from the l i t e r a t u r e p e r t a i n i n g s p e c i f i c a l l y to the exper ience of f a m i l i e s i n which an adu l t member i s l i v i n g w i th cance r , a d d i t i o n a l sources from r e l a t e d bodies o f l i t e r a t u r e and research w i l l be employed i n t h i s d i s c u s s i o n . I t was not the i n t e n t o f t h i s study to develop r i go rous theory about the f am i l y cancer e x p e r i e n c e . Ra ther , the s t u d y ' s purpose was to desc r ibe and e x p l a i n the exper ience from another p e r s p e c t i v e , t ha t o f the f a m i l y . Thus the o r g a n i z i n g framework f o r t h i s d i s c u s s i o n w i l l f o l l o w the themes as they were presented i n Chapter 4 , and the l i t e r a t u r e w i l l be examined in r e l a t i o n to those themes. 133 D e s c r i p t i o n of the Impact  General pe rcep t ions The percep t ion of f a m i l i e s tha t cancer had not produced s i g n i f i c a n t change in t h e i r l i v e s was an unexpected f i n d i n g of t h i s s tudy . M i l l e r and Nygren (1978) in t h e i r d i s c u s s i o n of ch ron i c i l l n e s s , and Geary (1979) i n her examinat ion o f f am i l y cop ing , both r e f e r r e d to the process of m in im iza t i on as a p o s s i b l e exp lana t i on of t h i s phenomenon. Both viewed reduc ing or i gno r i ng the s i g n i f i c a n c e of the hea l th problem as a p reva len t coping mechanism used by f a m i l i e s when con f ron ted wi th the i l l n e s s of a member. MacVicar (1975) f u r t h e r suggested tha t the impact of cancer cou ld r e s u l t i n a d i s t o r t i o n of r e c a l l , which might account f o r the f a m i l i e s ' a b i l i t y to adopt a pe r spec t i ve tha t min imized change tha t had o c c u r r e d . In c o n t r a s t , Speer (1973) , i n her study of the impact of the husband's i l l n e s s on f am i l y f u n c t i o n i n g , concluded tha t the event of severe i l l n e s s was not s u f f i c i e n t to cause f am i l y change. She be l i eved tha t the c a p a b i l i t i e s and f unc t i ons of the members o f each fami l y accounted f o r changes tha t d i d occu r . The f i n d i n g of the p resent study was c o n s i s t e n t w i th some of the accounts i n the l ay d e s c r i p t i o n s o f personal e x p e r i e n c e , which a l s o repor ted tha t cancer had made l i t t l e impact on the " n i t t y g r i t t y " of f am i l y l i f e (Abbot t , 1981, p. 140) . Impact on emotional s t a te The emotional r e a c t i o n s desc r ibed by the f a m i l i e s i n t h i s study were f a r l e s s dramat ic than would be assumed from a review of the l i t e r a t u r e r e l a t i n g to the psychosoc ia l aspects o f having cance r . As has been p r e v i o u s l y ment ioned, much of the research and theory r e l i e s upon the assumption t ha t cancer i n v a r i a b l y c o n s t i t u t e s a fami l y c r i s i s (Cohen & W e l l i s c h , 1978; K l e i n , 1971; Krouse & Krouse , 1982; L i v s e y , 1980; Moos & T s u , 1977). C l e a r l y , to the f a m i l i e s i n t h i s s tudy , the p r o f e s s i o n a l c o n s t r u c t c a l l e d c r i s i s would be an i napp rop r i a te means by which to desc r i be t h e i r cancer expe r i ence . However, to a p r o f e s s i o n a l v iewing these f a m i l i e s us ing an assumed presence of the c o n s t r u c t , many of the behav io rs and r e a c t i o n s desc r ibed by f a m i l i e s cou ld be pe rce ived i n terms of c r i s i s . Th i s d isc repancy i l l u s t r a t e s a l i m i t a t i o n i n the use fu lness of c r i s i s theory as a p p l i e d to cancer f a m i l i e s . The s p e c i f i c hazard tha t t r i g g e r s c r i s i s i n f a m i l i e s w i th cancer has been i d e n t i f i e d as "death knowledge" (Cohen & W e l l i s c h , 1978). Whi le a l l f a m i l i e s who p a r t i c i p a t e d i n the present study had exper ienced an awareness of m o r t a l i t y r e s u l t i n g from c a n c e r , none perce ived themselves to have had per iods of d i s r u p t i o n or d i s e q u i l i b r i u m tha t were p a r t i c u l a r l y d e v a s t a t i n g . Whi le d i s t o r t i o n of r e c a l l might p o s s i b l y e x p l a i n t h i s f i n d i n g , i t seems more l i k e l y t ha t the age bracket of the i l l members and spouses c o n t r i b u t e d to a d i f f e r e n t q u a l i t y of exper ience than tha t repor ted by younger f a m i l i e s . T h e o r i s t s who address f am i l y c r i s i s agree tha t v a r i a b l e s o ther than the s p e c i f i c hazard determine whether or not a f am i l y c r i s i s w i l l occu r . Among these v a r i a b l e s are the i n t e r n a l and ex te rna l resources of the f am i l y and the degree to which the fam i l y de f i nes the hazard as a t h r e a t to i t s s t a t u s , g o a l s , and o b j e c t i v e s ( G l a s s e r & G l a s s e r , 1970; Go ldbe rg , 1977). Thus, wh i l e c r i s i s theory may p rov ide a use fu l framework upon which to address the cancer exper ience i n younger f a m i l i e s , i t s u t i l i t y i n r e l a t i o n to o l d e r f a m i l i e s may be ques t i oned . A second f i n d i n g i n r e l a t i o n to the emotional s ta te of f a m i l i e s was the percep t ion tha t the emotional impact upon fami l y members was a t l e a s t as s i g n i f i c a n t as tha t upon p a t i e n t s . Th is f i n d i n g supports the views of o ther researchers ( C a s s i l e t h , e t a l . , 1982; C u r t i s s , 1981; He r t zbe rg , 1972) , and lends credence to the argument t ha t cancer i s , i n f a c t , a f am i l y expe r i ence . Impact on r o l e s As expec ted , r o l e s h i f t s and changes were common i n the f a m i l i e s who p a r t i c i p a t e d i n t h i s s tudy . Whi le the t h e o r e t i c a l l i t e r a t u r e i n d i c a t e d t ha t r o l e s h i f t s g e n e r a l l y added s t r e s s to the exper ience a fam i l y was a l ready undergo ing , the f a m i l i e s i n t h i s study repor ted minimal d i f f i c u l t y i n making these a d a p t a t i o n s . Reeder (1975) , i n a study of f a m i l i e s w i th a c h r o n i c a l l y d i s a b l e d a d u l t , repor ted a s i m i l a r f i n d i n g . She exp la ined t h i s f i n d i n g as a " r e t r o s p e c t i v e r e a l i t y r e c o n s t r u c t i o n " whose purpose was to permi t f a m i l i e s to pe rce i ve the change as m in ima l . G. F. Lewis (1979) repor ted tha t r o l e r e v e r s a l was not uncommon i n o l d e r f a m i l i e s ' adapta t ion to d e c l i n i n g h e a l t h . Thus the age group of the f a m i l i e s may have accounted f o r the ease w i th which they had been ab le to make r o l e t r a n s i t i o n s . G r i f f i n (1980) desc r i bed r e s t r u c t u r i n g and r e a l l o c a t i o n o f r o l e s as a means by which f a m i l i e s are ab le to preserve the pe rcep t ion of the i l l member as a pa r t of the fam i l y system. The f i n d i n g s of the present study i n d i c a t e t ha t the a c q u i s i t i o n of new fam i l y r o l e s was s u c c e s s f u l l y employed as a means of m in im iz ing the impact of r o l e l o s s e s by the i n d i v i d u a l s w i th c a n c e r . Cont rary to the f i n d i n g s of MacVicar (1981) , who repor ted tha t r o l e r e s t r u c t u r i n g l ead to t ens ion i n f a m i l i e s whose usual r o l e a l l o c a t i o n conformed to t r a d i t i o n a l p a t t e r n s , those f a m i l i e s i n which male par tne rs acqu i red new housework du t i es exper ienced the change as p o s i t i v e . Thus r o l e l o s s , ra the r than r o l e s h i f t or r e s t r u c t u r e , was the exper ience most l i k e l y to produce d i s t r e s s in these f a m i l i e s . Th is f i n d i n g conforms w i th tha t of Germain (1979), who perce ived the p a t i e n t ' s l o s s of independence to be the major d i f f i c u l t y f o r both p a t i e n t s and f a m i l i e s in the course of the cancer expe r i ence . Impact on communication The statement by Creech (1975), tha t having cancer was the modern-day v e r s i o n of hav ing l e p r o s y , was conf i rmed by the repo r t s o f severa l f a m i l i e s i n the present s tudy . Untoward r e a c t i o n s from o ther people were a commonly encountered aspect of the expe r i ence . Awareness of the s o c i a l pe rcep t ion of cancer d i d not de ter f a m i l i e s i n t h i s study from in forming f r i e n d s and acquaintances of t h e i r d iagnoses . Whether they d i scussed the cancer openly w i th t h e i r f r i e n d s or no t , f a m i l i e s repor ted a na tu ra l l i m i t to the use fu lness of t a l k i n g w i th o thers about cance r . Th is f i n d i n g b r ings i n t o ques t ion the commonly he ld assumption by hea l t h care p r o f e s s i o n a l s t ha t f rank and open communication about the cancer i s u n i v e r s a l l y h e l p f u l ( B e n o l i e l & McCork le , 1978; Kaplan e t a l . , 1977; MacDonald, 1979; McKhann, 1981). The f i n d i n g tha t f a m i l i e s b e l i e v e there comes a t ime to stop t a l k i n g about cancer r a i s e s i n t e r e s t i n g ques t ions i n terms of the assumptions hea l th care p r o f e s s i o n a l s make about the meaning of non-communicative f a m i l y b e h a v i o r s . As McKhann (1981) sugges ts : "Cancer p a t i e n t s do not always want to t a l k about t h e i r d i s e a s e . Even the very i l l have sunshine in t h e i r l i v e s , th ings they en joy , and o f ten even a sense of humor and p e r s p e c t i v e about t h e i r s i t u a t i o n " (p . 54 ) . C e r t a i n l y the e n t h u s i a s t i c response to the research i n te r v i ews demonstrated by f a m i l i e s i n the present s tudy , as i n the study done by Green (1982), suggests a s t rong d e s i r e to communicate w i th o t h e r s . The purpose of communicat ion, however, may not always be d i r e c t l y r e l a t e d to the sub jec t of cance r . The vas t number of cancer s t o r i e s acqu i red by f a m i l i e s through t h e i r communication wi th o thers was another unexpected f i n d i n g . Van Scoy-Mosher (1978) and Watson (1978) both t h e o r i z e tha t negat ive pe rcep t ions about cancer are o f ten r e l a t e d to the f a m i l y ' s memory of the exper ience of cancer i n a f r i e n d or r e l a t i v e . They desc r i be nurs ing measures to deal w i th misconcept ions f a m i l i e s may have r e l a t i n g to these past e x p e r i e n c e s . The f a m i l i e s i n the present s tudy , however, desc r ibed past exper ience w i th cancer as a minor c o n t r i b u t e r to t h e i r impress ions about c a n c e r . Impact on ph i losophy D i s t r e s s a s s o c i a t e d w i th ask ing the e x i s t e n t i a l ques t ion "Why me?" was a f i n d i n g of t h i s s tudy . D. H. Johnson (1980) a l s o repor ted t h i s phenomenon to be an exper ience of cancer p a t i e n t s i n h i s s tudy . He found t ha t p a t i e n t s repor ted a s p e c i f i c pe r i od of t ime i n which "Why me?" dominated t h e i r t h i n k i n g , a l though he d i d not i n d i c a t e when tha t t ime p e r i o d occur red i n r e l a t i o n to the i l l n e s s expe r i ence . Weisman and Worden (1976-77) desc r ibed the f i r s t 100 days of the cancer exper ience as a d i s t i n c t phase i n which p a t i e n t s were sub jec t to emotional d i s t r e s s a s s o c i a t e d w i th such doubt and q u e s t i o n i n g . S ince most o f the f a m i l i e s i n the present study had long passed tha t f i r s t 100 days , i t seems p o s s i b l e t ha t the " e x i s t e n t i a l p l i g h t " a s s o c i a t e d w i th the cancer may be an ongoing or r e c u r r i n g phenomenon. The d i r e c t or i n d i r e c t acknowledgement of death found i n t h i s study i s c o n s i s t e n t w i th the statement made by Smith (1975) tha t cancer i s pe rce i ved as l i f e - t h r e a t e n i n g whether or not the v i c t i m expects to be c u r e d . A l so repor ted by some of the f a m i l i e s i n t h i s study was a heightened v a l u i n g of l i f e a s s o c i a t e d w i th the awareness of m o r t a l i t y . Severa l l a y and p r o f e s s i o n a l t h e o r i s t s repo r t awareness of t h i s p o t e n t i a l f o r enr ichment i n l i f e - t h r e a t e n i n g i l l n e s s ( A l i s o n , 1977; E h l k e , 1978; MacDonald, 1979; Rosenbaum, 1975). As Glucksberg and S inger conc lude : " I t seems tha t the exper ience of f a c i n g death makes l i f e look b e t t e r " (1980, p. 77 ) . Exp lana t i on o f the Impact The b e l i e f tha t the q u a l i t y of t h e i r l i v e s w i th cancer was a f u n c t i o n o f cho ices they had made was a s i g n i f i c a n t f i n d i n g i n t h i s s tudy . F. M. Lewis (1982) conducted an e x p l o r a t o r y d e s c r i p t i v e study i n t o the r e l a t i o n s h i p between exper ienced personal con t ro l and psycho log i ca l w e l l - b e i n g i n i n d i v i d u a l s w i th c a n c e r . She found tha t cancer p a t i e n t s v a r i e d i n the degree to which they b e l i e v e d tha t t h e i r own behav ior cou ld a f f e c t t h e i r s i t u a t i o n . She a l s o observed tha t those who d id exper ience a sense of personal con t ro l tended to f e e l l e s s a n x i e t y , a g rea te r s e l f - e s t e e m , and a g rea te r sense of purpose i n l i f e than d i d those who pe rce i ved t h e i r s i t u a t i o n s to be a r e s u l t of f o r ces beyond t h e i r c o n t r o l . The f a c t t ha t the f a m i l i e s i n the present study saw themselves as having made c h o i c e s , and desc r i bed t h e i r coping as s u c c e s s f u l , suggests tha t the degree of normalcy they were ab le to ach ieve i n t h e i r l i v e s might be a measure o f exper ienced personal c o n t r o l . Adapt ing everyday l i f e To p a r t i c i p a n t s i n t h i s s tudy , mental a t t i t u d e made a s i g n i f i c a n t d i f f e r e n c e i n t h e i r exper ience of phys i ca l symptoms, p a r t i c u l a r l y those due to chemotherapy. The i r b e l i e f tha t f e a r p r e c i p i t a t e d s i de e f f e c t s , most p a r t i c u l a r l y v o m i t t i n g , has been subs tan t i a t ed i n the hea l th care l i t e r a t u r e ( A l t m a i e r , Ross , & Moore, 1982). Creech (1975) suggests t ha t f e a r of chemotherapy a r i s e s from two w i d e l y - h e l d p e r c e p t i o n s : i t s use as a l a s t r e s o r t measure f o r dy ing p a t i e n t s , and i t s power to produce d i s t u r b i n g s ide e f f e c t s such as h a i r l o s s and v i r i l i z a t i o n . He f u r t h e r repo r t s tha t "everyone seems to know someone who rece i ved chemotherapy . . . " ( p . 290) . I t i s p o s s i b l e t ha t s t o r i e s about o ther p e o p l e ' s cancer e x p e r i e n c e s , t h e n , p lay some par t i n determin ing the ex ten t to which such s i de e f f e c t s are expe r i enced . K e l l y (1978) t h e o r i z e s tha t l i f e w i th cancer can never be "normal" a g a i n . C a s s i l e t h and Hamil ton (1979) pe rce i ve tha t f a m i l i e s w i th cancer exper ience a temporary or permanent s t a te o f " no rm lessness . " The cancer e x p e r i e n c e , as desc r ibed by the f a m i l i e s i n the present s tudy , d i d permit the l i v i n g o f a "normal l i f e " . Carey (1975) , Green (1980) , and Hartman (1980) a l l pe rce i ve the at ta inment of a normal l i f e to be a pr imary goal f o r f a m i l i e s w i th c a n c e r . C u r t i s s (1981) , i n her study of cancer p a t i e n t s and t h e i r spouses, repor ted s u r p r i s e a t the degree of normalcy wi th which sub jec t s c la imed to l i v e t h e i r l i v e s . I t seems l i k e l y t ha t the l i v e s cancer f a m i l i e s desc r i bed as normal would be de f ined as depar tures from normal by those ou t s i de the expe r i ence . Thus the f i n d i n g s of the present study r e i n f o r c e the va lue of d e f i n i n g normalcy accord ing to the c r i t e r i a adopted by each unique f a m i l y . C i c o u r e l (1970) b e l i e v e s tha t normative o rder i n day- to-day f am i l y l i v i n g i s " b u i l t i n t o what members assume to be known i n common and taken f o r granted i n t h e i r everyday a c t i v i t i e s " (p . 168) . In t h i s c o n t e x t , the y a r d s t i c k s f o r d e f i n i n g normal used by f a m i l i e s served as shared re fe rence po in t s f o r p e r c e i v i n g t h e i r l i v e s as normal l i v e s . The fam i l y system d i s e q u i l i b r i u m , which may r e s u l t from having p lann ing and fu tu re o r i e n t a t i o n d i s r u p t e d (Johnson & Norby, 1981), was not found i n the f a m i l i e s i n the present s tudy . Al though a l l p a r t i c i p a n t s repor ted symptoms and t reatment regimes tha t made day- to-day p lann ing d i f f i c u l t , and a l s o acknowledged tha t t h e i r i l l n e s s threatened fu tu re o r i e n t a t i o n , they d i d not a l l a s c r i b e to the commonly he ld b e l i e f tha t cancer f a m i l i e s should l i v e one day at a t ime ( K e l l y , 1978). I n t e r e s t i n g l y , some f a m i l i e s repor ted tha t p rese rv i ng t h e i r f u tu re o r i e n t a t i o n represented a c o n s c i o u s l y chosen coping s t ra tegy ra the r than a den ia l of r e a l i t y . The f i n d i n g of t h i s s tudy , tha t f a m i l i e s mainta ined and preserved t h e i r usual emot ional r o l e s no tw i ths tand ing which member was the ac tua l p a t i e n t , c o n t r a s t s w i th the w ide ly he ld assumption tha t emotional support f l ows from fam i l y to the p a t i e n t (Geary , 1979; He r t zbe rg , 1972) . Donley (1978) and Speese-Owens (1981) argue tha t p a t i e n t s , as members of f am i l y sys tems, should be regarded as both g i v e r s and r e c e i v e r s of emotional suppor t . I t seems l i k e l y t ha t the p r e s e r v a t i o n of usual emotional r o l e s i s a more s i g n i f i c a n t determinant of normalcy f o r these f a m i l i e s than i s the p rese rva t i on of ins t rumenta l r o l e s . F u r t h e r , t h i s f i n d i n g supports the conc lus i on of o ther researchers t ha t fami l y members exper ience the emotional impact of cancer to at l e a s t the same degree as do p a t i e n t s ( C a s s i l e t h e t a l . , 1982; C u r t i s s , 1981). Th i s study found tha t f a m i l i e s who chose not to express emotions openly pe rce ived t h i s to be an e f f e c t i v e cop ing s t r a t e g y . The l i t e r a t u r e r e f l e c t s a commonly-held assumption tha t open exp ress ion of f e e l i n g s i s a t h e r a p e u t i c o b j e c t i v e ( B e n o l i e l & McCork le , 1978; Hartman, 1980; Kaplan e t a l . , 1977). F u r t h e r , where lack o f communication i s observed , i t i s repor ted as r e f l e c t i n g den ia l (McKhan, 1981) or " c o n s p i r a c i e s o f s i l e n c e " (Krant & Johns ton , 1977-78) , both of which are desc r ibed as pa thogen ic . Thus the present f i n d i n g cha l l enges the assumption tha t any s i n g l e coping s t y l e i s u n i v e r s a l l y advantageous. The a b i l i t y of some f a m i l i e s to communicate a non-express ive s t ra tegy to the researcher and to each o ther i s sugges t i ve of a shared unders tanding ra the r than a communication problem. M i l l e r and Nygren (1978) i d e n t i f y d i s p l a c e m e n t / d i v e r s i o n as a general ca tegory o f cop ing behav io rs commonly employed by cancer f a m i l i e s . The f i n d i n g s of the present study e labo ra te on the meaning of such s t r a t e g i e s . F a m i l i e s repor ted worry and s e l f - p i t y as powerful t h r e a t s to t h e i r emotional comfort and normalcy. The s p e c i f i c t a c t i c s a s s o c i a t e d w i th keeping busy and not d w e l l i n g on t h e i r problems were recogn ized by these f a m i l i e s to be h i gh l y e f f e c t i v e s t r a t e g i e s . E v o l v i n g a network Parsons (1977) conducted a d e s c r i p t i v e study f o r the purpose of i d e n t i f y i n g the needs of the i n te rmed ia te stage t e r m i n a l l y i l l cancer p a t i e n t a t home. She repor ted . t h a t i n her sample, non- fami ly r e l a t i o n s h i p s s u f f e r e d a d e c l i n e as a r e s u l t of cance r . The a b i l i t y of most f a m i l i e s i n the present study to ma in ta in a s o c i a l network may b e , t h e r e f o r e , a r e s u l t of the s t r a t e g i e s they employed to reduce fea r among t h e i r f r i e n d s and acqua in tances . MacDonald (1979) b e l i e v e s tha t a hea l thy a t t i t u d e toward cancer i m p l i e s be ing ab le to t e l l o thers about i t and to use the word " cance r " i n the t e l l i n g . The exper ience of many of these f a m i l i e s suppor ts tha t b e l i e f . The ex ten t to which cancer f a m i l i e s gave meaning to t h e i r exper ience by us ing i t to he lp o thers was an unexpected f i n d i n g . Other researchers have repor ted the d i scove ry t ha t cancer p a t i e n t s and f a m i l i e s welcome the oppo r tun i t y to p a r t i c i p a t e i n research as a means of i n d i r e c t l y he lp ing o thers ( C u r t i s s , 1981; F a l l , 1981; Green, 1982; D. H. Johnson, 1980). Luce and Dawson (1975) prov ided a p a r t i a l exp lana t i on of t h i s phenomenon. They argued tha t the North American e t h i c r equ i r es a c o n t r i b u t i o n to the betterment of f e l l o w human beings before one can leave the wor ld w i th a sense of accompl ishment. They b e l i e v e tha t research p a r t i c i p a t i o n may f u l f i l l t h i s requ i rement . The f a m i l i e s i n the present s tudy , however, repor ted s i g n i f i c a n t l y more he lp ing ac ts than merely p a r t i c i p a t i n g i n r e s e a r c h . Humphrey (1978) i n h i s account o f exper iences p r i o r to h i s w i f e ' s death from c a n c e r , desc r ibed being as ton ished at the frequency wi th which f r i e n d s sought them out f o r suppor t . The f a m i l i e s i n the present study repor ted a s i m i l a r expe r i ence . Cox (1979) b e l i e v e s tha t a l l o w i n g cancer p a t i e n t s to serve as educators and counse lo rs of o thers may coun te rac t the psycho log i ca l problems a s s o c i a t e d w i th being a pass ive r e c i p i e n t of hea l th c a r e . I t seems l i k e l y , t h e n , tha t the mot i va t ion of cancer f am l i es to p a r t i c i p a t e i n research does not r e f l e c t merely a l a s t d i t c h attempt to c o n t r i b u t e , but r a the r emerges as one aspect of a broader scope of he lp ing a c t s , the purposes of which may i nc l ude m in im iz ing the impact of being a help r e c i p i e n t and p r o v i d i n g a source of meaning f o r the cancer expe r i ence . The unique bond tha t developed between some cancer p a t i e n t s and f a m i l i e s was desc r ibed i n the accoun ts . Ryan and Ryan (1979) , authors of a l ay account of t h e i r f a m i l y ' s e x p e r i e n c e , acknowledge t h i s phenomenon: Cancer p a t i e n t s have a bond tha t surpasses a hea l thy pe rson ' s unders tand ing . The presence of f e a r and the agony of pa in are t r ansm i t t ed w i thout words by one of us to ano ther . I cannot say how t h i s i s done. I on ly know i t happens (p. 321) . The f a c t t ha t none of the p a r t i c i p a n t f a m i l i e s in t h i s study had at tended cancer support groups i n s p i t e of pe rce ived a v a i l a b i l i t y cou ld be exp la i ned by t h e i r pe rcep t ion tha t they d i d not r equ i re h e l p . The p r o l i f e r a t i o n of such support groups repor ted i n the l i t e r a t u r e suggests t ha t where the need f o r f am i l y s e r v i c e s a r i s e s , support groups are a popular s o l u t i o n (Johnson & Norby, 1981; Vachon, L y a l l , Rogers , Formo, Freedman, Cochrane, & Freeman, 1979). The 1981 study done by Welch found tha t h a l f of the f am i l y members surveyed ranked the es tab l i shment of suppor t groups as the l e a s t h e l p f u l measure of a l i s t o f p o t e n t i a l hea l t h ca re s e r v i c e s . I t seems u n l i k e l y , t h e n , t ha t the age of the f a m i l i e s i n the present study accounts e n t i r e l y f o r t h e i r lack of involvement i n such groups. Ra the r , i t appears tha t many cancer f a m i l i e s c rea te networks which f u l f i l l s i m i l a r purposes ye t are not i d e n t i f i e d as hea l th care s e r v i c e s . An a d d i t i o n a l i n t r i g u i n g f i n d i n g of t h i s study was the r o l e tha t cancer s t o r i e s p layed i n c r e a t i n g a symbol ic network o f cancer p a t i e n t s and f a m i l i e s . The potency of t h i s network was r e f l e c t e d i n the absence of any repo r t s of i s o l a t i o n , an exper ience tha t some t h e o r i s t s b e l i e v e i s so common tha t i t i s "a lmost a pa r t of having the d i s e a s e " (MacDonald, 1979, p. 9 5 ) . I t was a conc lus i on of Hartman (1980) t ha t lack of knowledge about the day- to -day exper ience of l i v i n g w i th cancer served to r e i n f o r c e f a m i l i e s ' f e e l i n g s of i s o l a t i o n from the r e s t of the w o r l d . S ince f a m i l i e s may i n f a c t have cons ide rab le access to such in fo rmat ion about each o t h e r , one wonders i f the i s o l a t i o n exper ience i s perhaps a r e f l e c t i o n of the r e l a t i o n s h i p between these f a m i l i e s and the hea l th care p r o f e s s i o n a l s they i n t e r a c t w i t h . The not ion tha t a symbol ic network may be a f a c t o r i n the f am i l y cancer exper ience i s subs tan t i a t ed by a r e l a t e d f i n d i n g by Green (1982) t ha t cancer f a m i l i e s repor ted l a r g e networks o f s o c i a l suppor t , a l though q u a n t i f i a b l e suppor t i ve ac ts were much fewer . I t was her suggest ion tha t the mere symbol ic presence of p o t e n t i a l l y h e l p f u l o thers serves as a type of support system f o r these f a m i l i e s . Managing medical care The f i n d i n g tha t medical care i s s u e s were perce ived by f a m i l i e s as having a s i g n i f i c a n t impact upon the q u a l i t y of t h e i r l i v i n g - w i t h - c a n c e r exper ience was a l s o repor ted by Green (1982) . C l e a r l y , f a m i l i e s do not pe rce i ve the medical care exper ience as separate from the everyday e x p e r i e n c e . Ra the r , both are viewed as pa r t s of an i n t e g r a t e d whole. The power of hea l t h care worke rs , and most p a r t i c u l a r l y the p h y s i c i a n , was apparent i n f a m i l i e s ' accounts of t h e i r cancer e x p e r i e n c e s . The two aspects most r e l evan t to t ha t pe rce ived power were con t ro l of i n fo rma t ion and con t ro l o f human conce rn . The need f o r i n fo rma t ion has been we l l documented i n the research l i t e r a t u r e (Hampe, 1975). F i s h e r , Andrews, H a r r i s , and Mar t i n (1978) i n a r e t r o s p e c t i v e study f o l l o w i n g the death of cancer p a t i e n t s found a s i g n i f i c a n t c o r r e l a t i o n between d i f f i c u l t y o b t a i n i n g i n fo rma t ion and f am i l y emotional problems. Green and Ad le rsbe rg (1982) suggest tha t hea l th care workers are cond i t i oned to b e l i e v e they must have the r i g h t answers, and , e s p e c i a l l y when dea l i ng w i th f a m i l i e s , f e a r exposure of ignorance or incompetence. I t was a f i n d i n g of the present study tha t f a m i l i e s were we l l aware tha t t h e i r i n f o r m a t i o n - s e e k i n g had the p o t e n t i a l f o r p l a c i n g p h y s i c i a n s i n a di lemma. C l e a r l y , the s t r a t e g i e s used by f a m i l i e s to reassure and manipulate hea l th ca re p rov i de rs demonstrated tha t the need to know e c l i p s e d even the s t r onges t r e l uc tance to i n f o rm . The f i n d i n g of t h i s study tha t f a m i l i e s pe rce ived expressed i n t e r e s t by the p h y s i c i a n to be an e s s e n t i a l a t t r i b u t e of h i g h - q u a l i t y hea l th care i s c o n s i s t e n t w i th the views of K le inman, E i s e n b e r g , and Good (1978) . They b e l i e v e tha t the r i g i d b iomedica l view of d i sease he ld by most p h y s i c i a n s i n our s o c i e t y i s an inadequate o r i e n t a t i o n accord ing to most p a t i e n t s and laymen. In t h e i r e s t i m a t i o n , what p a t i e n t s a c t u a l l y s u f f e r i s not d i s e a s e , an abnormal i ty i n the s t r u c t u r e and f u n c t i o n of body organs and sys tems, but r a the r i l l n e s s , an exper ience of d i s v a l u e d change i n s t a t e o f being and s o c i a l f u n c t i o n (p . 251) . Thus, they argue, the assumption by p h y s i c i a n s , t ha t b i o l o g i c concerns are more b a s i c and s i g n i f i c a n t to f a m i l i e s than are psychosoc ia l conce rns , p laces the p rov i de rs and r e c i p i e n t s of hea l th care i n a c o n f l i c t of p r i o r i t i e s . Garner (1966) r epo r t s t ha t p a t i e n t s do eva lua te the care they r e c e i v e . He f u r t h e r suggests t ha t they pe rce i ve l i s t e n i n g and unders tand ing on the pa r t o f the p h y s i c i a n as meeting t h e i r c r i t e r i a f o r adequate c a r e . Schnaper (1977) suppor ts t h i s view and desc r i bes the p o t e n t i a l f o r such expressed i n t e r e s t to min imize s u f f e r i n g even i n the absence of a c u r e . The pe rcep t ion by f a m i l i e s t ha t p h y s i c i a n s f a i l to understand t h i s e s s e n t i a l component of h i g h - q u a l i t y care i s i l l u s t r a t e d by Kaehele (1952) i n her account o f her own cancer expe r i ence : The c o n s c i e n t i o u s doc tor makes an examina t i on , performs a b i o p s y , and g ives up before he opens h i s mouth to f u r t h e r i n t i m i d a t e the cower ing wretch on h i s t a b l e . " S i x months," he s a y s , and i n s i x months more or l e s s the o b l i g i n g p a t i e n t l i e s down and d i e s , never hav ing known tha t he cou ld do any th ing e l s e . I t i s a form o f modern-day voodooism, performed by medic ine men i n s t e r i l e whi te coa ts f e a r f u l l y l a c k i n g i n imag ina t ion (pp. 13-14) . The argument t ha t t h i s aspect of hea l t h care has not changed s i g n i f i c a n t l y i n the 30 years s i nce tha t account was w r i t t e n i s supported by the f i n d i n g s of Hampe (1975) . She surveyed spouses o f t e r m i n a l l y i l l p a t i e n t s , and repor ted tha t on ly 15 percent of the sample f e l t tha t they had r e c e i v e d accep tance , suppor t , and comfor t from hea l th care p r o f e s s i o n a l s . Welch (1981) t h e o r i z e d tha t compass ion, k i n d n e s s , and chee r fu l ness the pa r t o f hea l t h care p rov ide rs p layed a s i g n i f i c a n t pa r t i n f a c i l i t a t i n g hope fu lness . The resou rce fu l ness of p a r t i c i p a n t s i n the present study to f a c i l i t a t e such behav io rs i n t h e i r hea l th care p rov ide rs i l l u s t r a t e s the potency of the need f o r such expressed human i n t e r e s t . Generat ing hope Harker (1972) l i n k s the mystery a s s o c i a t e d wi th cancer w i th the f ea r i t evokes i n p a t i e n t s and f a m i l i e s . D e m y s t i f i c a t i o n s t r a t e g i e s used by f a m i l i e s i n the present study demonstrated t h e i r capac i t y to f i n d c r e a t i v e measures f o r m in im iz ing tha t f e a r . F a m i l i e s advocated use of the word " cance r " i n t h i s c a p a c i t y . MacDonald (1979) desc r i bes us ing the word f r e e l y as a means of enhancing courage. The degree to which a l t e r n a t i v e i n fo rma t ion sources were used by f a m i l i e s was an i n t e r e s t i n g f i n d i n g i n t h i s s tudy . Reports of the phenomenon have not been l o c a t e d i n the hea l t h care l i t e r a t u r e . Where a l t e r n a t i v e i n fo rma t ion sources are mentioned a t a l l , i t i s w i t h i n the con tex t of e x p l a i n i n g misconceptons he ld by l ay people (Creech , 1975; Van-Scoy Mosher, 1978; Watson, 1978). Th is cu r ren t f i n d i n g suggests tha t access to i n fo rma t ion sources beyond the con t ro l o f the hea l t h care p r o v i d e r may i n f a c t c o n t r i b u t e f avo rab l y to the f am i l y cancer e x p e r i e n c e . The f i n d i n g of t h i s study tha t some f a m i l i e s a s c r i b e d to a f i r m theory of cancer i n s p i t e of being informed to the con t ra ry by hea l th care p r o v i d e r s i s a l s o i n t r i g u i n g . Evidence of behav ior change a s s o c i a t e d w i th f e a r o f contag ion was found i n on ly one p a r t i c i p a n t . Most f a m i l i e s repor ted c o n s i d e r a b l e e f f o r t s to re -educa te f r i e n d s who pe rce ived cancer as con tag ious . B u r k h a l t e r (1978) mentioned the myth of contag ion as a popular s o c i a l b e l i e f . Al though the p o t e n t i a l of the myth f o r i n t e r f e r i n g i n cancer f a m i l i e s ' psychosoc ia l exper ience i s s e l f - e v i d e n t , i t seems p o s s i b l e t ha t p a r t i a l b e l i e f i n the myth may a s s i s t some f a m i l i e s to demyst i fy the cause of t h e i r cance r . One might p o s t u l a t e t ha t having an u n l i k e l y answer to the ques t ion "Why me?" i s pe rce ived by these f a m i l i e s as b e t t e r than having no answer at a l l . P a r t i c i p a n t s i n t h i s study desc r ibed " f i g h t i n g " as an e s s e n t i a l p recu rso r to genera t ing hope. B ra ine rd (1981) suggests t ha t a " f i g h t i n g " approach to cancer reduces fea r and f a c i l i t a t e s a sense of i nner s t r e n g t h . B u r k h a l t e r (1978) a s s o c i a t e s " f i g h t i n g " w i th the percep t ion of cancer as a c h a l l e n g e . The f i n d i n g tha t f a m i l i e s pe rce i ve " f i g h t i n g " as having the p o t e n t i a l to i n f l u e n c e not on ly q u a l i t y of l i f e but a l s o the d isease i t s e l f may r e f l e c t the exper ienced personal con t ro l desc r i bed by F . M. Lewis (1982) and d i scussed e a r l i e r i n t h i s chap te r . The b e l i e f tha t psychosoc ia l f a c t o r s may i n f l u e n c e tumour e v o l u t i o n has been s u b s t a n t i a t e d to some degree i n exper iments w i th mice (Dechambre, 1981). In view of the repor ted s o c i a l metaphor of cancer as " a pathology of energy , a d isease of the w i l l " (Sontag , 1978) , i t seems p o s s i b l e tha t cancer f a m i l i e s r equ i r e " f i g h t i n g " to ach ieve a sense of i nne r s t r e n g t h . The va lue of " f i g h t i n g " repor ted i n the l i t e r a t u r e suppor ts the f i n d i n g of t h i s study tha t acceptance of r e a l i t y w i thout a " f i g h t i n g " approach i s not conducive to hope. The p a r t i c i p a n t s i n t h i s study expressed a compe l l i ng need to acqu i re " f a i t h " not on ly i n themselves but a l s o i n medical sc ience and i n t h e i r own d o c t o r . Weisman and Worden (1976-77) repo r t t ha t those who cope we l l w i th the e x i s t e n t i a l p l i g h t of cancer are those who f i n d something i n which to have c o n f i d e n c e . P e l l e t i e r (1979) desc r i bes a phenomenon i n p a t i e n t s t ha t i s v a r i o u s l y r e f e r r e d to as " the f a i t h t ha t h e a l s , " " the w i l l to l i v e , " and " the very powerful b e l i e f f a c t o r " (p . 209) . I t i s h i s con ten t ion tha t t h i s phenomenon accounts not on ly f o r enhanced q u a l i t y o f l i f e but a l s o f o r i nc reased s u r v i v a l t imes i n cance r . Th is op in ion conforms w i th the b e l i e f s expressed by f a m i l i e s i n t h i s s tudy . I n teg ra t i on o f the Exper ience A major f i n d i n g of t h i s study was tha t f a m i l i e s pe rce ived t h e i r a t t i t u d e s to be a key f a c t o r i n e x p l a i n i n g t h e i r a b i l i t y to l i v e a normal l i f e i n s p i t e of the presence of cance r . Worden and Sobel (1978) repo r t ego s t reng th at the t ime of d i agnos i s w i th cancer to be c l o s e l y r e l a t e d to psychosoc ia l a d a p t a t i o n . F u r t h e r , they repor t a s t rong c o r r e l a t i o n between ego s t reng th and the e f f e c t i v e use of cop ing s t r a t e g i e s i n t h e i r sample of 163 s u b j e c t s . S p i e g e l , Bloom, and Yalom (1981) found a s s o c i a t i o n s between mastery of the s t r e s s of te rmina l i l l n e s s and such v a r i a b l e s as ego s t r e n g t h , op t im ism, r e s o u r c e f u l n e s s , and l e v e l of l i f e s a t i s f a c t i o n . The f i n d i n g s of these researchers support the percep t ion of the f a m i l i e s i n t h i s study tha t t h e i r a t t i t u d e d i d i n f a c t make a d i f f e r e n c e . Brooks (1979) laments the dearth of cu r ren t knowledge about the r o l e o f a t t i t u d e s i n cop ing w i th cance r . Weisman and Worden (1976-77) suggest an a s s o c i a t i o n between p e s s i m i s t i c , r e g r e t f u l a t t i t u d e s and an emot iona l l y d i s r u p t i v e cancer expe r i ence . The d e s c r i p t i o n of negat ive a t t i t u d e s by f a m i l i e s i n the present study suppor ts t ha t o p i n i o n . I t was a f i n d i n g of t h i s s t u d y , though, tha t a l though f a m i l i e s tended to agree as to what c o n s t i t u t e d a negat ive a t t i t u d e , consensus as to the nature of a p o s i t i v e a t t i t u d e d i d not o c c u r . Al though the content of a p o s i t i v e a t t i t u d e v a r i e d between f a m i l i e s , the p r o p e r t i e s of t ha t a t t i t u d e remained r e l a t i v e l y c o n s i s t e n t . The study found tha t a p o s i t i v e a t t i t u d e shaped the cancer exper ience i n the f o l l o w i n g ways: i t min imized the exper ience of phys i ca l symptoms; i t f a c i l i t a t e d the b u i l d i n g of suppor t i ve networks ; i t augmented the q u a l i t y of hea l th care r e c e i v e d ; i t p rov ided answers to e x i s t e n t i a l q u e s t i o n s ; i t promoted acceptance of the prospects of t e r m i n a l i t y ; and , i t generated hope. D. H. Johnson (1980) i n h i s d e s c r i p t i v e study of chemotherapy p a t i e n t s desc r i bed major l i f e adjustments i n h i s s u b j e c t s , "as i f p rev ious i d e n t i t i e s no longer mat tered" (p . 3 3 ) . In c o n t r a s t , the f i n d i n g o f the p resent study was t ha t f a m i l i e s pe rce ived themselves to be the same as they always had been. W e l l i s c h e t a l . (1978) and Hartman (1980) suggest t ha t the a b i l i t y of f a m i l i e s to cope w i th cancer i s l a r g e l y determined by the a b i l i t y to cope w i th past e x p e r i e n c e s . Thus the c a p a c i t y o f the cancer exper ience to change a f am i l y i d e n t i t y may we l l be a f unc t i on of the a t t i t u d e they adopt toward c a n c e r , an a t t i t u d e which i t s e l f i s rooted i n t h e i r h i s t o r y . The i n t e g r a t i n g cons t r uc t w i th which f a m i l i e s i n t h i s study exp la ined t h e i r a t t i t u d e s toward the cancer e x p e r i e n c e , and thus the shape of tha t e x p e r i e n c e , was t e n t a t i v e l y desc r ibed as a " f a m i l y l i f e concep t . " The i n g r e d i e n t s o f t h i s l i f e concept were the b e l i e f s and va lues w i th which f a m i l i e s de f ined who they were and how they l i v e d . Th is l i f e concept may be viewed as analogous to the concept o f s e l f i n i n d i v i d u a l s . White (1976) desc r i bes i t as a c o n s t r u c t tha t o rgan izes the i n d i v i d u a l around the core of b o d i l y sameness and the c o n t i n u i t y of memory. He emphasizes i t s va lue i n understanding the nature of p e r s o n a l i t y . The p a r a l l e l c o n s t r u c t i n o r g a n i z i n g a fam i l y i d e n t i t y i s l e s s we l l unders tood. McLain and Weigert (1979) , however, address a phenomenon they term " f a m i l y c o n s c i o u s n e s s . " They de f i ne t h i s as " a fundamental t aken - fo r -g ran tedness which can be s a i d to c o n s t i t u t e a unique f am i l y a t t i t u d e " (p . 173) . F u r t h e r , they pe rce i ve t h i s f am i l y consc iousness to be a "symbo l i c u n i v e r s e " t ha t g i ves meaning and s i g n i f i c a n c e to ex te rna l events and i n d i v i d u a l e x i s t e n c e (p . 183) . The f i n d i n g s of t h i s study demonstrate a s p e c i f i c a p p l i c a t i o n to f i n d i n g meaning i n the exper ience o f c a n c e r . A f i n d i n g of t h i s study was tha t the presence of a t t i t u d e s as exp lana to ry frameworks f o r making sense of the exper ience was more r e l e v a n t to the shape of the cancer exper ience than was the ac tua l content o f such a t t i t u d e s . Th is f i n d i n g conforms w i th the b e l i e f s of o ther t h e o r i s t s . H i l l (1965) , a p ioneer i n f am i l y c r i s i s t h e o r y , b e l i e v e d t ha t the key to understanding the d i f f e r e n c e between f a m i l i e s who coped and f a m i l i e s who d id not cope e f f e c t i v e l y i n the face of ca tas t rophe was the "meaning d imension" (pp. 3 5 - 6 ) . McCubbin, J o y , Caub le , Comean, Pa t te rson and Needle (1980) , i n a rev iew Of the l a s t decade 's theory and research on f a m i l y s t r e s s and c o p i n g , agreed w i th H i l l ' s b e l i e f . They concluded tha t the determin ing f a c t o r d i d not appear to be the s p e c i f i c meaning the f am i l y adopted, but r a the r the presence or absence of such e x p l a n a t i o n s . Thus the c r u c i a l i s s u e appears to be not what sense the f am i l y makes of an even t , but the f a c t t ha t i t does make sense to them. McCubbin e t a l . (1980) and de Give (1980) agree tha t the r o l e of va lues and a t t i t u d e s i n c o n s t r u c t i n g f am i l y exper iences i n t imes of s t r e s s has not y e t been s t u d i e d to any s i g n i f i c a n t degree. S ince there i s l i t t l e a v a i l a b l e knowledge upon which to draw conc lus i ons about the f i n d i n g s of t h i s s tudy , one may on ly specu la te as to the r e l a t i o n s h i p between what these f a m i l i e s desc r i be and the cancer exper ience i n g e n e r a l . The apparent absence of c r i s i s , the pe rcep t i on tha t no th ing had changed, and the normalcy of everyday l i f e found i n the f a m i l i e s i n t h i s study may bear some r e l a t i o n s h i p to the stage o f l i f e i n which they con f ron ted the cancer e x p e r i e n c e . In her study of cancer f a m i l i e s spanning a l l adu l t age groups , Green (1982) repor ted the f o l l o w i n g : Almost i n v a r i a b l y o l d e r f a m i l i e s respond to ques t ions about p rev ious t imes of change by r e l a t i n g a "ph i losophy of hard t imes" which seems to be a va lue system developed over yea rs o f ups and downs. Often the cu r ren t exper ience i s desc r i bed as "one more t h i n g " s i m i l a r to an event i n the depress ion or a p rev ious l o s s . In s h o r t , the cu r ren t s i t u a t i o n seems to be adopted i n t o the f a b r i c of l i f e more q u i c k l y than i n younger f a m i l i e s w i th l e s s h i s t o r y , (p . 59) Indeed, the f i n d i n g s o f the present study support the pe rcep t i on tha t the h i s t o r y they b r i ng i n t o the exper ience e x p l a i n s much of the everyday l i f e o f o l d e r f a m i l i e s w i th cance r . Beyond the f a c t t ha t they have a r i c h source of h i s t o r y , o l d e r f a m i l i e s may b r i n g o ther s p e c i a l a t t r i b u t e s to the cancer expe r i ence . The psychosoc ia l task o f the o l d e r a d u l t has been desc r ibed as tha t o f "ego i n t e g r i t y " ( U . S . Department of Heal th and Human S e r v i c e s , 1980). The o l d e r adu l t i s b e l i e v e d to be c o n f r o n t i n g the i s sue of meaning i n l i f e as he or she approaches dea th . McCorkle (1976) , i n her study of t e r m i n a l l y i l l a d u l t s , concluded tha t those who coped s u c c e s s f u l l y were those who, f o r va r i ous reasons i n c l u d i n g age , had a l ready accepted the "narrowed focus " to t h e i r l i v e s when they encountered the cancer exper ience (p . 216) . In view of the tasks a s s o c i a t e d w i th f i n d i n g meaning i n o l d e r adu l t hood , o l d e r f a m i l i e s might we l l surpass younger f a m i l i e s i n t h e i r a b i l i t y to a t t r i b u t e meaning to the cancer expe r i ence . Thus i t seems app rop r i a te to surmise tha t the o l d e r f a m i l y w i th cancer b r i ngs s p e c i a l q u a l i t i e s to the expe r i ence . Such q u a l i t i e s not on ly shape the everyday l i f e of the f a m i l y , but a l s o permit the fam i l y to understand how and why they exper ience cancer as they do. Th is chapter has d i scussed the f i n d i n g s of the cu r ren t study i n r e l a t i o n to p rev ious research f i n d i n g s and t h e o r e t i c a l l i t e r a t u r e f o r the purpose of i n c o r p o r a t i n g the fam i l y pe rspec t i ve i n t o what has p r e v i o u s l y been w r i t t e n about the fam i l y cancer expe r i ence . These f i n d i n g s c l e a r l y suggest t ha t cancer need not r e s u l t i n c r i s i s o r s i g n i f i c a n t f am i l y change. While the impact of cancer i s exper ienced i n a l l aspects of everyday l i f e , f a m i l i e s are capable of deve lop ing s t r a t e g i c approaches w i th which to moderate or min imize these impac ts . The s t r a t e g i e s employed may d i f f e r from fam i l y to f a m i l y , ye t may s t i l l f a c i l i t a t e a common group of va lued outcomes: m in im iz ing symptoms; e v o l v i n g networks; augmenting hea l t h c a r e ; answering e x i s t e n t i a l q u e s t i o n s ; promoting accep tance ; and , genera t ing hope. Th is study f u r t h e r found tha t f a m i l i e s perce ive a t t i t u d e to be a key determinant i n the shape o f the cancer expe r i ence . The a t t i t u d e they desc r i be has i t s roo ts i n t h e i r h i s t o r y and i s man i fes t i n the manner i n which they de f ine themselves and t h e i r l i v e s . The e s s e n t i a l a t t r i b u t e of such an a t t i t u d e i s tha t i t i n t e g r a t e s the cancer exper ience i n t o the con tex t of l i f e and p rov ides a sense of meaning. I t has been pos tu la ted t ha t the s p e c i a l q u a l i t i e s of the o l d e r f am i l y permit them to shape t h e i r cancer exper iences i n c r e a t i v e ways and a l s o to understand how and why they exper ience cancer as they do. The f i n d i n g s of t h i s study a l s o i nc luded some i n t r i g u i n g ideas tha t are not r e f l e c t e d i n the research and t h e o r e t i c a l l i t e r a t u r e . The preva lence and s i g n i f i c a n c e of cancer s t o r i e s i s one of these f i n d i n g s . Another i s the rea l and symbol ic support networks c rea ted by the f a m i l i e s . A t h i r d i s the r esou rce fu l ness of f a m i l i e s i n humanizing t h e i r hea l th care p rov i de rs f o r the purpose of ensur ing h i g h - q u a l i t y c a r e . Chapter 6 Summary, C o n c l u s i o n s , and I m p l i c a t i o n s f o r Nurs ing Summary and Conc lus ions Th is study was designed to desc r i be and e x p l a i n psychosoc ia l aspec ts o f the f am i l y cancer exper ience from the pe rspec t i ve of f a m i l i e s who were l i v i n g w i th cancer i n one of t h e i r adu l t members. H o l i s t i c f a m i l y - c e n t r e d nu rs ing was recogn ized as an emerging requirement i n cancer c a r e . I t was f u r t h e r recogn ized tha t research-based knowledge about the fam i l y cancer exper ience was an e s s e n t i a l foundat ion f o r f a c i l i t a t i n g the p r o v i s i o n of such c a r e . The methodology tha t d i r e c t e d t h i s study was the phenomenological paradigm o f q u a l i t a t i v e r e s e a r c h . Th is methodology prov ided a means by which the researche r cou ld en te r i n t o the exper ience of f a m i l i e s l i v i n g w i th cancer f o r the purpose of i n t e r p r e t i n g i t as i t appeared to those f a m i l i e s engaged i n the expe r i ence . The method assumes t h a t , through the research a c t , in formants and i n v e s t i g a t o r can c o n s t r u c t accounts of the phenomenon tha t desc r i be the r e a l i t y w i th a r i chness and depth u n a t t a i n a b l e w i th q u a n t i t a t i v e methodo log ies . The l i t e r a t u r e was reviewed f o r the purpose o f i d e n t i f y i n g f i n d i n g s from prev ious research i n t o aspec ts o f the f a m i l y ' s psychosoc ia l exper ience w i th cance r . S ince t h i s body of knowledge was found to be ext remely l i m i t e d , a rev iew of common t h e o r e t i c a l pe rcep t ions about the f am i l y cancer exper ience was a l s o i n c l u d e d . From t h i s d i s c u s s i o n , general themes were i d e n t i f i e d and u t i l i z e d to o rgan ize the i n i t i a l phases of the d a t a - c o l l e c t i o n p r o c e s s . Thus the l i t e r a t u r e o r i e n t e d the i n v e s t i g a t i o n i n r e l a t i o n to f am i l y emotional s t a t e , r o l e s , communication and ph i l osophy . The data were c o l l e c t e d by way o f ex tens i ve i n t e r v i e w s w i th a t o t a l o f e i g h t f a m i l i e s , each of whom had an a d u l t member c u r r e n t l y r e c e i v i n g t reatment f o r cancer a t one Oncology Ou t -pa t i en t C l i n i c . A l l o f the i n d i v i d u a l s w i th cancer were o l d e r a d u l t s . In terv iews were a u d i o - t a p e d , and the t r a n s c r i b e d verbat im accounts formed the bulk of the d a t a . Data c o l l e c t i o n and a n a l y s i s occur red s imu l taneous ly through the process of cons tan t comparat ive a n a l y s i s . A n a l y t i c ma te r i a l was used throughout the data c o l l e c t i o n process to guide and focus the c o n s t r u c t i o n of accoun ts . The accounts cons t ruc ted through the research ac t revea led three exp lana to ry l a y e r s w i t h i n the f a m i l y ' s pe rcep t ion of i t s cancer e x p e r i e n c e . The f i r s t l a y e r was comprised of a d e s c r i p t i o n o f c a n c e r ' s va r i ous impacts upon fam i l y emotional s t a t e , r o l e s , communicat ion, and ph i l osophy . Wi th in t h i s d e s c r i p t i v e l a y e r , two c o n t r a s t i n g themes emerged. These were the f a m i l i e s ' pe rcep t i on tha t noth ing had changed as a r e s u l t of having c a n c e r , and t h e i r repo r t s of s i g n i f i c a n t c a n c e r - r e l a t e d changes i n everyday l i f e . The remaining l a y e r s of the accounts shed l i g h t on the meaning of t h i s apparent c o n t r a d i c t i o n . F i r s t l y , f a m i l i e s exp la ined a v a r i e t y of s t r a t e g i c measures they had chosen i n order to preserve normalcy i n the presence of cance r . The accounts o f t h e i r manoevres to adapt to everyday l i f e , evo lve suppor t networks , manage t h e i r medical c a r e , and generate hope i l l u s t r a t e d the c a p a c i t i e s of these f a m i l i e s to minimize and modify c a n c e r ' s p o t e n t i a l impact upon t h e i r most va lued r e a l i t i e s . The f i n a l exp lana to ry l a y e r l o c a t e d a l l of the s t r a t e g i c approaches w i t h i n the con tex t of a t t i t u d e s adopted by f a m i l i e s toward dea l i ng w i th the cancer expe r i ence . The accounts a l s o l o c a t e d the a t t i t u d e s w i t h i n the contex t of the f a m i l i e s ' s e l f - d e f i n i t i o n s and c h a r a c t e r i s t i c approaches toward l i f e . Thus the exp lana t i on of the exper ience i n terms of such b e l i e f s and a t t i t u d e s demonstrated the manner i n which f a m i l i e s i n t e g r a t e d , made sense o f , and found meaning i n the cancer expe r i ence . The major c o n c l u s i o n of t h i s study i s tha t the key to understanding the fam i l y cancer exper ience i s an understanding of the b e l i e f s and va lues a f am i l y uses to de f i ne i t s e l f and to approach the process of l i v i n g . The o l d e r adu l t s who p a r t i c i p a t e d i n t h i s study i l l u s t r a t e d potent r e l a t i o n s h i p s between who they were as f a m i l i e s and the way i n which they exper ienced c a n c e r . T h e i r c a p a c i t y to desc r i be the cancer exper ience and account f o r i t s many aspects suggests t ha t o l d e r adu l t s may have a p a r t i c u l a r l y acute c a p a c i t y not on ly f o r adapt ing we l l to l i f e w i th c a n c e r , but a l s o f o r unders tand ing and e x p l a i n i n g i t s meaning. A second c o n c l u s i o n i s t ha t the a t t i t u d e a fami l y adopts toward the cancer exper ience i s of major s i g n i f i c a n c e not only i n d i r e c t i n g s t r a t e g i c c h o i c e s , but a l s o i n i n t e g r a t i n g the e n t i r e expe r i ence . Whi le a t t i t u d e s enhance phys i ca l and emotional w e l l - b e i n g , they a l s o generate ex te rna l support from both the hea l th care system and the community a t l a r g e . A t h i r d c o n c l u s i o n drawn from the f i n d i n g s of t h i s study i s tha t cancer may or may not be exper ienced as a fam i l y c r i s i s . S ince a preponderance of cancer theory r e l i e s upon the c r i s i s model as a common assumpt ion , t h i s c o n c l u s i o n tends to cha l l enge the g e n e r a l i z a b i l i t y of such t heo ry . F a m i l i e s argue t ha t they are capable o f c o n s i d e r a b l e adap ta t ion w i thout the a s s i s t a n c e of hea l th care s e r v i c e s . Rather than c r i s i s i n t e r v e n t i o n or cancer support g roups , f a m i l i e s need in fo rma t ion and human concern from t h e i r hea l th care p r o v i d e r s . Th is study concludes t ha t f a m i l i e s w i th cancer have access to a vas t quan t i t y of i n fo rma t ion a r i s i n g from sources not c o n t r o l l e d by t h e i r hea l t h care p r o v i d e r s . Cancer s t o r i e s and a l t e r n a t i v e in fo rmat ion sources are w ide ly used not on ly to eva lua te the i n fo rma t ion they acqu i re " o f f i c i a l l y , " but a l s o to l o c a t e ideas i n which they may develop f a i t h and hope. An a d d i t i o n a l c o n c l u s i o n of t h i s study i s t ha t f a m i l i e s d i f f e r as to t h e i r s p e c i f i c needs and s t y l e s . Each possesses i t s own c r i t e r i a upon which to eva lua te normalcy i n everyday l i f e . Each chooses d i f f e r e n t cop ing s t r a t e g i e s f o r e x e r t i n g con t ro l over the exper ience and a c h i e v i n g normalcy. A f i n a l c o n c l u s i o n i s t ha t cancer i s most d e f i n i t e l y exper ienced w i t h i n a fam i l y c o n t e x t . I f the psychosoc ia l cancer exper ience i s to be understood a t a l l , i t must be examined as a f am i l y exper ience ra the r than the exper ience of an i n d i v i d u a l p a t i e n t . Whi le one i n d i v i d u a l may be the p h y s i c a l bearer of the d i s e a s e , the e n t i r e f am i l y l i v e s w i th the e x p e r i e n c e . Imp l i ca t i ons f o r Nurs ing P r a c t i c e The f i n d i n g s of t h i s study suggest a number of i m p l i c a t i o n s f o r nu rs ing p r a c t i c e . F i r s t l y , nurses must develop s k i l l s i n a s s e s s i n g , p l a n n i n g , and i n t e r v e n i n g w i th f am i l y groups ra the r than i s o l a t e d i n d i v i d u a l s i f they are to p rov ide r espons ib l e psychosoc ia l cancer c a r e . S ince cancer f a m i l i e s seem eager and w i l l i n g to t a l k about t h e i r e x p e r i e n c e , the s p e c i f i c s k i l l s requ i red of nurses i nc l ude ask ing the " r i g h t " ques t ions and l i s t e n i n g to the answers. Such appropr ia te ques t i on ing would be tha t which r e f l e c t s the f a c t t ha t f a m i l i e s exper ience compl ica ted and c o n t r a d i c t o r y r e a l i t i e s . Assessment of cancer f a m i l i e s should i nc l ude ga the r i ng i n fo rma t ion about how f a m i l i e s view themselves as a u n i t , how they b e l i e v e cha l lenges should be approached, and how they de f i ne normalcy i n t h e i r everyday l i v e s . Such assessment should take the matura t iona l s tage of the f am i l y i n t o account and cons ide r the i m p l i c a t i o n s tha t the matura t iona l stage might have f o r the e x p e r i e n c e . P lann ing f o r cancer f a m i l i e s should i nc lude measures toward f a c i l i t a t i n g the adopt ion of a t t i t u d e s and b e l i e f s about the cancer expe r i ence . The appropr ia teness of a t t i t u d e s and b e l i e f s should not be eva luated i n terms of f a c t u a l a c c u r a c y , but ra the r i n terms of the p o t e n t i a l f o r f a c i l i t a t i n g f a i t h , hope, and meaning. The e f f o r t s of f a m i l i e s to f i n d meaning i n t h e i r exper ience should be v a l i d a t e d and suppor ted . In adm in i s te r i ng care d i r e c t e d toward the psychosoc ia l hea l th o f cancer f a m i l i e s , nurses should avo id assuming tha t f a m i l i e s are i n c r i s i s or r equ i r e ex te rna l i n t e r v e n t i o n to f a c i l i t a t e t h e i r c o p i n g . S ince dependency on hea l t h care s e r v i c e s th rea tens the personal con t ro l exper ienced by f a m i l i e s , he lp should be o f f e red i n s u b t l e and t a c t f u l ways. Nurses cou ld counterac t the negat ive impact of the h e l p - r e c i p i e n t r o l e by f a c i l i t a t i n g app rop r ia te c i rcumstances i n which cancer f a m i l i e s can prov ide meaningful he lp to o t h e r s . Where p o s s i b l e , cancer f a m i l i e s should have the oppor tun i t y to p a r t i c i p a t e i n r e s e a r c h , i n educa t iona l programs, or i n one- to-one c o u n s e l l i n g . Nurses can l e a r n more about the exper iences of cancer f a m i l i e s and r e i n f o r c e t h e i r sense of con t ro l by ask ing them to share t h e i r knowledge. Where s p e c i f i c s e r v i c e s are a v a i l a b l e f o r cancer f a m i l i e s , support groups should c o n s t i t u t e on ly one aspect o f these s e r v i c e s . A t t e n t i o n should be pa id to c r e a t i n g means f o r f a c i l i t a t i n g networking f o r f a m i l i e s who choose not to p a r t i c i p a t e i n groups and lack a cancer network i n t h e i r s o c i a l w o r l d s . S ince cancer f a m i l i e s do seek ou ts ide sources of i n f o r m a t i o n , nurses shou ld not assume they know on ly what they have been " o f f i c i a l l y " t o l d . F u r t h e r , app rop r ia te resource m a t e r i a l s should be made e a s i l y a c c e s s i b l e to these f a m i l i e s . Nurses who care f o r cancer f a m i l i e s should cau t i on them aga ins t adopt ing coping s t r a t e g i e s s imply because they worked f o r someone e l s e . S ince l a y and p r o f e s s i o n a l cancer resources tend to assume s p e c i f i c s t r a t e g i e s are u n i v e r s a l l y h e l p f u l , f a m i l i e s may exper ience d i s t r e s s i f such in fo rmat ion i s not adequate ly f i l t e r e d . Ra the r , f a m i l i e s should be encouraged to eva lua te the u t i l i t y of suggested s t r a t e g i e s i n terms of t h e i r own b e l i e f s and v a l u e s . F i n a l l y , the nurse should adopt a f am i l y advocate r o l e , p a r t i c u l a r l y i n r e l a t i o n to the f a m i l y ' s need f o r i n fo rma t ion and human concern . Beyond a t tend ing to these needs h e r s e l f , the nurse may need to educate o ther hea l th care p r o f e s s i o n a l s as to the mutual b e n e f i t o f meeting such needs. I t i s apparent t ha t the f i n d i n g s of t h i s study prov ide a b a s i s upon which to f a c i l i t a t e an understanding of n u r s i n g ' s p o t e n t i a l r o l e i n the ca re o f f a m i l i e s w i th c a n c e r . O b v i o u s l y , much more research-based knowledge would be requ i red before a comprehensive understanding of the f am i l y cancer exper ience cou ld be ach ieved . Imp l i ca t i ons f o r nu rs ing research w i l l be d i scussed i n the f o l l o w i n g s e c t i o n . I m p l i c a t i o n s f o r Nurs ing Research Th i s study has demonstrated the p o t e n t i a l f o r conduct ing research t h a t addresses fam i l y groups ra the r than i n d i v i d u a l members. Al though i t i s l i k e l y t ha t the data ob ta ined from research on fam i l y groups d i f f e r s from tha t ob ta ined from the members s e p a r a t e l y , the l a t t e r need not be viewed as the on ly manageable in fo rmat ion sou rce . C e r t a i n l y , s t ud ies tha t i n c l u d e data c o l l e c t i o n from both the f am i l y u n i t as a whole and the i n d i v i d u a l members sepa ra te l y might be an i l l u m i n a t i n g source of a d d i t i o n a l understanding about f am i l y dynamics. The phenomenological paradigm of q u a l i t a t i v e research p rov ides a va luab le method f o r e s t a b l i s h i n g a general knowledge base about f a m i l i e s i n a v a r i e t y of l i f e c i r cums tances . S ince the f i n d i n g s of t h i s study d i d cha l l enge some commonly he ld assumptions about what f a m i l i e s might e x p e r i e n c e , i t seems app rop r i a te to suggest the need f o r ex tens i ve q u a l i t a t i v e e x p l o r a t i o n i n t o f am i l y l i f e before p roduc t i ve hypotheses about f a m i l i e s are fo rmu la ted . The f i n d i n g s of t h i s study suggest a number of i m p l i c a t i o n s f o r f u r t h e r research i n t o the cancer f am i l y expe r i ence . S ince t h i s study based i t s f i n d i n g s on the accounts of o l d e r a d u l t s , s i m i l a r s t ud ies w i th f a m i l i e s i n d i f f e r e n t matura t iona l s tages would shed l i g h t on the degree to which the f i n d i n g s of t h i s study r e f l e c t the exper ience of o l d e r adu l t s r a the r than the general f am i l y cancer expe r i ence . F u r t h e r , s ince the f i n d i n g s o f t h i s study i nc luded phenomena tha t were not repor ted i n the l i t e r a t u r e , i t seems appropr ia te to suggest t ha t q u a l i t a t i v e methodologies are h i gh l y app rop r i a te to the general ques t ion of what f a m i l i e s exper ience a t t h i s po in t i n the e v o l u t i o n of knowledge. S p e c i f i c i s s u e s w i t h i n the f i n d i n g s of t h i s study a l s o lend themselves to f u r t h e r q u a l i t a t i v e s tudy . Kleinman (1977) advocates the study of exp lana to ry models of the d e f i n i t i o n and meaning of i l l n e s s f o r f a m i l i e s . Th i s study demonstrated a r e l a t i o n s h i p between exp lana to ry models of i l l n e s s and the f a m i l y ' s exp lana tory model of i t s e l f as seen through a pe rce ived " l i f e concep t " . The nature and r e l a t i o n s h i p o f such exp lana to ry models deserves s e r i o u s c o n s i d e r a t i o n i n f u tu re r e s e a r c h . The meaning and preva lence of the cancer s to ry phenomenon i s a theme worthy of f u tu re research a t t e n t i o n . A r e l a t e d theme, t ha t of cancer ne twork ing , i s another area i n which q u a l i t a t i v e research would be f r u i t f u l . S ince such phenomena appear to represent mechanisms by which f a m i l i e s rega in con t ro l over t h e i r b e l i e f s and t h e i r a b i l i t y to hope, f u r t h e r e x p l o r a t i o n of t h e i r meaning might i l l u m i n a t e pe rce ived inadequac ies of the cu r ren t hea l th care system and e s t a b l i s h the va lue of hea l th care system con t ro l i n the i l l n e s s expe r i ence . Such understanding would p rov ide an i n t e l l i g e n t b a s i s upon which to p lan programs f o r cancer f a m i l i e s t ha t meet t h e i r needs w i thout e c l i p s i n g the ex te rna l networks of suppor t and i n fo rma t ion they c rea te on t h e i r own. The f i n d i n g tha t access to i n fo rma t ion and degree of concern are the pr imary c r i t e r i a by which cancer f a m i l i e s eva lua te t h e i r medical care suggests a need f o r f u r t h e r r e s e a r c h . S tud ies tha t l o c a t e s p e c i f i c sources o f hea l t h care s a t i s f a c t i o n might add s t reng th to the argument t ha t d i s e a s e - o r i e n t e d care i s counter p roduc t i ve i n cancer the rapy . S ince f a m i l i e s i n t h i s study adapted e f f e c t i v e l y through the use of c o n t r a s t i n g s t r a t e g i e s , f u r t h e r study i n t o general and s p e c i f i c coping t a c t i c s seem i n d i c a t e d . Research i n t o s p e c i f i c coping mechanisms might be f r u i t f u l i n determin ing o ther f a c t o r s t ha t i n f l u e n c e t h e i r e f f e c t i v e n e s s . I s o l a t i o n of v a r i a b l e s tha t determine the f i t between the fam i l y and the s p e c i f i c s t r a tegy would g r e a t l y b e n e f i t the capac i t y of he lpe rs to f a c i l i t a t e f am i l y c o p i n g . A f i n a l i s sue r e q u i r i n g f u r t h e r study i s the u t i l i t y of the c r i s i s model i n approaching c a n c e r . Re t rospec t i ve and l o n g i t u d i n a l s t u d i e s of cancer f a m i l i e s cou ld y i e l d va luab le data as to p r e d i c t i v e f a c t o r s a s s o c i a t e d w i th the i n c i d e n c e of c r i s i s i n cance r . S ince i t seems l i k e l y t ha t a t t i t u d e , meaning, and ph i losophy of l i f e p lay some r o l e i n media t ing the t h rea t of f am i l y c r i s i s , p a r t i c u l a r research a t t e n t i o n should be pa id to those e l u s i v e y e t e s s e n t i a l v a r i a b l e s . In c o n c l u s i o n , the f am i l y cancer exper ience has not y e t r e c e i v e d the a t t e n t i o n i t deserves i n hea l th care p lann ing and r e s e a r c h . Much more knowledge i s r equ i r ed before the hea l th care p r o f e s s i o n s can app rec ia te the c o m p l e x i t i e s of h e l p i n g , w i thout j e o p a r d i z i n g , f am i l y adap ta t ion i n the cancer e x p e r i e n c e . At p r e s e n t , the on ly v i a b l e source of e s s e n t i a l knowledge and unders tanding i s the exper t w i tnesses who have exper ienced l i f e w i th cancer i n the f a m i l y . B i b l i o g r a p h y Abbo t t , D. No th ing ' s changed: D ia ry o f a mastectomy. New York : F r e d e r i c k F e l l , 1981. A l i s o n R. He lp ing the i n d i v i d u a l who has been s u c c e s s f u l l y t r e a t e d f o r cance r : The emotional ad justment . In Proceedings of the symposium on  cop ing w i th c a n c e r . Toronto : Canadian Cancer S o c i e t y , 1 9 / 7 . A l t m a i e r , E . M . , R o s s , W . E . , & Moore, K. A P i l o t i n v e s t i g a t i o n of the psycho log i c f u n c t i o n i n g o f p a t i e n t s w i th a n t i c i p a t o r y v o m i t t i n g . Cancer , 1982, 49 , 201-204. American Cancer S o c i e t y . A cancer source book f o r nu r ses . New York : American Cancer S o c i e t y , 1975. Bahnson, C . B . Psycho log i c and emotional i s s u e s i n cance r : The psycho-t h e r a p e u t i c care o f the cancer p a t i e n t . Seminars i n Oncology, 1975, 2 ( 4 ) , 293-309. B a r c k l e y , V. The c r i s e s i n cance r . American Journa l of N u r s i n g , 1967, 67 , 278-280. Bayh, M . , & K o t z , M.L. Marvel l a : A personal j ou rney . New York : Harcour t Brace J o v a n o v i c h , 1979. B e n o l i e l , J . Q . , & McCork le , R. A h o l i s t i c approach to te rmina l i l l n e s s . Cancer N u r s i n g , 1978, 1_, 143-149. B r a i n e r d , C A . Nurs ing concepts i n r e h a b i l i t a t i o n of the cancer p a t i e n t : the p a t i e n t , the f a m i l y , the community. In D.L . Vredevoe, A. D e r d i a r i a n , L . P . S a r n a , M. F r i e l & J . A . G . S h i p l a c o f f ( E d s . ) , Concepts  of oncology n u r s i n g . Englewood C l i f f s , N . J . : P r e n t i c e - H a l l , 1981. B reau , C , & Dracup, K. He lp ing the spouse of c r i t i c a l l y i l l p a t i e n t s . American Journa l o f N u r s i n g , 1978, 78_, 50-53. B r o d l a n d , G . A . , & Andreasen, N . J . C . Adjustment problems of the f am i l y of the burn p a t i e n t . In R .H. Moos ( E d . ) , Coping w i th p h y s i c a l i l l n e s s . New York : Plenum, 1977. Brody , J . E . You can f i g h t cancer and w i n . New York : Quadrangle, 1977. B rooks , A. P u b l i c and p r o f e s s i o n a l a t t i t u d e s toward cance r : A view from Great B r i t a i n . Cancer N u r s i n g , 1979, 2 , 453-460. B rowns te in , K . 0 . B ra ins to rm : A personal s t o r y . New York : Avon, 1980. B u r k h a l t e r , P .K . S o c i o c u l t u r a l aspects of cance r . In P .K . Bu rkha l t e r & D .L . Donley ( E d s . ) , Dynamics o f oncology n u r s i n g . New York : McGraw-H i l l , 1978. 163 Can to r , R .C . And a t ime to l i v e : Toward emotional w e l l - b e i n g dur ing the  c r i s i s o f c a n c e r . New York : Harper & Row, 1978. Ca rey , R.G. L i v i n g u n t i l dea th : A program o f s e r v i c e and research f o r the t e r m i n a l l y i l l . In E . Kub le r -Ross ( E d . ) , Death : The f i n a l stage of  growth. Englewood C l i f f s , N . J . : P r e n t i c e - H a l l , 1975. C a s s i l e t h , B . R . , & Hami l ton , J . N . The f am i l y w i th cance r . In B .R. C a s s i l e t h (Ed . ) The cancer p a t i e n t : S o c i a l and medical aspec ts o f  c a r e . P h i l a d e l p h i a : Lea & F e b i g e r , 1979. C a s s i l e t h , B . R . , He ibe rge r , R . M . , March, V . , & Su t ton -Smi th , K. E f f e c t o f a u d i o v i s u a l cancer programs on p a t i e n t s and f a m i l i e s . Journa l o f  Medica l E d u c a t i o n , 1982, 57_(1) , 54-59. C i c o u r e l , A . V . The a c q u i s i t i o n of s o c i a l s t r u c t u r e : Toward a deve lop-mental s o c i o l o g y o f language and meaning. In J . D . Douglas ( E d . ) , Understanding everyday l i f e : Toward the r e c o n s t r u c t i o n of s o c i a l  knowledge" Ch i cago : A l d i n e , 1970. Cohen, M .M . , & W e l l i s c h , D.K. L i v i n g i n l imbo : Psychosoc ia l i n t e r v e n t i o n i n f a m i l i e s w i th a cancer p a t i e n t . American Journa l of Psychotherapy , 1978, 32 , 561-571 . Cook, S . Second l i f e . New York : Simon & S c h u s t e r , 1981. Cox , B . G . The cancer p a t i e n t as educator and c o u n s e l o r . In J . Tach6, H. Selye & S . B . Day ( E d s . ) , Cancer , s t r e s s , and dea th . New York : Plenum, 1979. C r e e c h , R .H . The psychosoc ia l suppor t o f the cancer p a t i e n t : A medical o n c o l o g i s t ' s v i ewpo i n t . Seminars i n Oncology, 1975, 2_, ( 4 ) , 285-292. C u r t i s s , C P . The e f f e c t s o f i l l n e s s and cop ing s t r a t e g i e s o f cancer  p a t i e n t s and t h e i r spouses . Unpubl ished M a s t e r ' s t h e s i s , Ya le U n i v e r s i t y , 1981. D a v i s , A . J . The phenomenological approach i n nu rs ing r e s e a r c h . In N.L . Chaska ( E d . ) , The nu rs ing p r o f e s s i o n : Views through the m i s t . New York : M c G r a w - H i l l , 1978. Dechambre, R. Psychosoc ia l s t r e s s and cancer i n m ice . In K. Bammer & B . H . Newberry ( E d s . ) , S t r e s s and c a n c e r . Toronto : C . J . Hogre fe , 1981. de G i v e , M.L. Maintenance of f am i l y e q u i l i b r i u m . In J . R . M i l l e r & E . H . Janos i k ( E d s . ) , Fam i l y - f ocused c a r e . New York : M c G r a w - H i l l , 1980. D i e r s , D. Research i n nu rs ing p r a c t i c e . P h i l a d e l p h i a : L i p p i n c o t t , 1979. Don ley , D .L . Development o f an oncology u n i t . In P .K . Bu rkha l t e r & D.L . Donley ( E d s . ) , Dynamics o f oncology n u r s i n g . New York: M c G r a w - H i l l , 1978. 164 E h l k e , G. The psycho log i ca l aspects of c a n c e r . In P .K . Bu rkha l t e r & D.L . Donley ( E d s . ) , Dynamics o f oncology n u r s i n g . New York : M c G r a w - H i l l , 1978. F a l l , J . M . Coping s t r a t e g i e s o f p a t i e n t s l i v i n g w i th cance r . Unpubl ished M a s t e r ' s t h e s i s , Ya le U n i v e r s i t y , 1981. F i s h e r , S . , Andrews, G . R . , H a r r i s , S . , & M a r t i n , S . Cancer p a t i e n t s and  t h e i r f a m i l i e s : A r e t r o s p e c t i v e survey i n Western Sydney. Sydney, A u s t r a l i a : New South Wales U n i v e r s i t y Press, 1978. F o x , R . E . Angela Ambros ia : The s t o r y o f a g i r l ' s w inn ing f i g h t f o r l i f e . New York : A l f red A. Knopf , 1979. 8 Garne r , H.H. Psychosomat ic management o f the p a t i e n t w i th mal ignancy. S p r i n g f i e l d , 1 1 1 . : Char les C. Thomas, 19bb. Geary , M.C. Suppor t ing f am i l y c o p i n g . Superv i so r Nurse , 1979, 10 ( 3 ) , 52 -53 ; 57-59. ~ Germain, C . P . H . The cancer u n i t : An ethnography. W a k e f i e l d , M a s s . : Nurs ing Resources I n c . , 1979. G i a c q u i n t a , B. He lp ing f a m i l i e s face the c r i s i s of cance r . American  Journa l o f N u r s i n g , 1977, 7_7_, 1585-1588. G l a s s e r , P . H . , and G l a s s e r , L . N . F a m i l i e s i n c r i s i s . New York : Harper & Row, 1970. G l u c k s b e r g , H . , & S i n g e r , J .W. Cancer c a r e : A personal gu ide . B a l t i m o r e : Johns Hopkins U n i v e r s i t y P r e s s , 1980. Go ldbe rg , S . B . Fami ly t asks and r e a c t i o n s i n the c r i s i s of dea th . In R .H. Moos ( E d . ) , Coping w i th P h y s i c a l I l l n e s s . New York : Plenum, 1977. Green, C P . Working w i th the fam i l y w i th cance r : A nurs ing p e r s p e c t i v e , Nurs ing L e a d e r s h i p , 1980, 3_(4) , 16-22 . Green, C P . Fami ly r e a c t i o n s to the d i agnos i s and t reatment of cance r : An e x p l o r a t o r y s tudy . In Proceedings o f the na t i ona l nu rs ing research  con fe rence . Vancouver: U n i v e r s i t y of B r i t i s h Columbia School 6T N u r s i n g , 1982. Green, C P . , & A d l e r s b e r g , M. The myth of i n d i v i d u a l i t y . The Canadian  Nurse , 1982, 78 ( 1 0 ) , 49-50. G r i f f i n , J . Q . P h y s i c a l i l l n e s s i n the f a m i l y . In J . R . M i l l e r & E . H . Janos ik ( E d s . ) , Fam i l y - f ocused c a r e . New York : M c G r a w - H i l l , 1980. Hampe, S . 0 . Needs o f the g r i e v i n g spouse i n a h o s p i t a l s e t t i n g . Nurs ing Research , 1975, 24 ( 2 ) , 113-120. 165 Hande l , G. P s y c h o l o g i c a l study of whole f a m i l i e s . In M.B. Sussman ( E d . ) , Sourcebook i n Mar r iage and the f am i l y (4th e d . ) . Bos ton : Houghton M i f f l i n , 1974. Harke r , B . L . Cancer and communication problems: A personal expe r i ence . P s y c h i a t r y i n M e d i c i n e , 1972, 3 , 163-171. Hartman, J . B . Tak ing t ime : Support f o r people w i th cancer and the people  who care about them. Be thesda , Md: U .S . Department o f Heal th and Human S e r v i c e s , 1980. H e r t z b e r g , L . J . Cancer and the dy ing p a t i e n t . American Journa l o f  P s y c h i a t r y , 1972, 128, 806-810. H i l l , R. Gener ic f ea tu res of f a m i l i e s under s t r e s s . In H . J . Parad ( E d . ) , C r i s i s i n t e r v e n t i o n : Se lec ted r e a d i n g s . New York : Fami ly S e r v i c e A s s o c i a t i o n of Amer i ca , 1965. Humphrey, D. J e a n ' s way. A y l e s b u r y , B u c k s . , Great B r i t a i n : Fontana/ C o l l i n s , 1978. I p s w i t c h , E . , Sco t t was he re . New York : De laco r te P r e s s , 1979. Johnson , D.H. Coping w i th cance r : In terv iews w i th p a t i e n t s . Unpubl ished M a s t e r ' s t h e s i s , Ya le U n i v e r s i t y , 1980. Johnson , J . L . , & Norby, P .A . We can weekend: A program f o r cancer f a m i l i e s . Cancer N u r s i n g , 1981, 4 , 23-28 . Kaehe le , E. L i v i n g w i th c a n c e r . Garden C i t y , N . Y . : Doubleday, 1952. K a p l a n , D . M . , Sm i th , A . , G r o b s t e i n , R . , & F ischman, S . E . Fami ly media t ion o f s t r e s s . In R .H. Moos ( E d . ) , Coping w i th p h y s i c a l i l l n e s s . New York : Plenum, 1977. K e l l y , O .E . L i v i n g w i th a l i f e - t h r e a t e n i n g i l l n e s s . In C A . G a r f i e l d ( E d . ) , Psychosoc ia l care of the dy ing p a t i e n t . New York : M c G r a w - H i l l , 1978. : K l e i n , R. A c r i s i s to grow on . Cancer , 1971, 28 , 1660-1665. K le inman, A . M . Re th ink ing the s o c i a l and c u l t u r a l con tex t o f psycho-pathology and p s y c h i a t r i c c a r e . In T . C . Manschreck & A . M . Kleinman ( E d s . ) , Renewal i n p s y c h i a t r y : A c r i t i c a l r a t i o n a l p e r s p e c t i v e . New York : W i l e y , 1977. K le inman, A . , E i s e n b e r g , L . , & Good, B. . C u l t u r e , i l l n e s s , and c a r e : C l i n i c a l l essons from an th ropo log ic and c r o s s - c u l t u r a l r e s e a r c h . Annals of I n te rna l M e d i c i n e , 1978, 8 8 , 251-258. K r a n t , M . J . , & Johns ton , L. Fami ly members' pe rcep t ions of communications i n l a t e stage cance r . I n t e rna t i ona l Journa l o f P s y c h i a t r y i n  M e d i c i n e , 1977-78, 8 , 203-2HT: 166 Krouse, H . J . , & Krouse , J . H . Cancer as c r i s i s : The c r i t i c a l elements of ad justment . Nurs ing Research , 1982, 31_ ( 2 ) , 96-101. K u b l e r - R o s s , E . Quest ions and answers on death & d y i n g . New York : M a c M i l l a n , 197T: L a i n g , R.D. The p o l i t i c s o f the f a m i l y . Toronto : Hunter Rose, 1969. L e e , L. Walking through the f i r e : A h o s p i t a l j o u r n a l . New York : Bantam, 1977: — L e i b e r , L . , Plumb, M .M. , Gers tenzang, M . L . , & H o l l a n d , J . The communication of a f f e c t i o n between cancer p a t i e n t s and t h e i r spouses. Psychosomat ic M e d i c i n e , 1976, 38 , 379-389. L e i n i n g e r , M. Roles and d i r e c t i o n s i n nurs ing and cancer n u r s i n g . In Proceedings of the second na t i ona l conference on cancer n u r s i n g . S t . L o u i s : American Cancer S o c i e t y , 1977. L e w i s , F .M . Exper ienced personal con t ro l and q u a l i t y o f l i f e i n l a t e -stage cancer p a t i e n t s . Nurs ing Research , 1982, 31_(2 ) , 113-119. L e w i s , G . F . S o c i a l i z a t i o n and s o c i a l r o l e s i n l i f e c y c l e p e r s p e c t i v e . In J . R . F o l t a & E . S . Deck ( E d s . ) , A s o c i o l o g i c a l framework f o r p a t i e n t  care (2nd e d . ) . New York : W i l e y , 19 /9 . Lindemann, C. B i r t h c o n t r o l and the unmarr ied young woman. New York : S p r i n g e r , 1974. L i n n , M.W., L i n n , B . S . , & H a r r i s , R. E f f e c t s of counse l i ng f o r l a t e stage cancer p a t i e n t s . Cancer , 1982, 49 , 1048-1055. L i t m a n , T . J . The f am i l y as a b a s i c u n i t i n hea l th and medical c a r e : A s o c i a l - b e h a v i o r a l overv iew. S o c i a l Sc ience and M e d i c i n e , 1974, 8 , 495-519. L i v s e y , C . G . P h y s i c a l i l l n e s s and f am i l y dynamics. In P.W. Power & A . E . De l l Orto ( E d s . ) , Role o f the f am i l y i n the r e h a b i l i t a t i o n of the  p h y s i c a l l y d i s a b l e d : B a l t i m o r e : U n i v e r s i t y Park P r e s s , 1980. Loewenste in , L. A t ime to l ove - A t ime to d i e . Londen: W.H. A l l e n , 1970. Lo rde , A . The cancer j o u r n a l s . A r g y l e , N . Y . : S p i n s t e r s Ink, 1980. Luce , J . K . , & Dawson, J . J . Q u a l i t y of l i f e . Seminars i n onco logy , 1975, 2_, 323-327. MacDonald, J . A . When cancer s t r i k e s : A book f o r p a t i e n t s , f a m i l i e s and  f r i e n d s . Toron to : M c C l e l l a n d & S tewar t , 1975. ) MacV ica r , M.G. The e f f e c t o f cancer i n the male spouse on the f a m i l y . Unpubl ished doc to ra l d i s s e r t a t i o n , Ohio Sta te U n i v e r s i t y , 1 9 / 5 . MacV ica r , M.G. Nurs ing research a p p l i e d to cancer nurs ing p r a c t i c e . In L . B . Mar ino ( E d . ) , Cancer N u r s i n g . S t . L o u i s : Mosby, 1981. McCork le , R. Terminal i l l n e s s : Human attachments and in tended g o a l s . Communicating Nurs ing Research , 1976, 9 , 207-221. McCubbin, H . I . , J o y , C . B . , Caub le , A . E . , Comeau, J . K . , P a t t e r s o n , T . M . , & Need le , R .H . Fami ly s t r e s s and c o p i n g : A decade rev iew. Journa l of  Marr iage and the F a m i l y , 1980, 42 , 855-871. McKhann, C . F . The f a c t s about c a n c e r : A guide f o r p a t i e n t s , f a m i l y , and  f r i e n d s . Englewood C l i f f s , N . J . : P r e n t i c e - H a l l , 198^1. M c L a i n , R . , & We iger t , A . Toward a phenomenological soc io l ogy of f a m i l y : A programmatic essay . In W.R. B u r r , R. H i l l , F . I . Nye & I .L . Re iss ( E d s . ) , Contemporary t h e o r i e s about the f am i l y ( V o l . 2 ) . New York : The Free P r e s s , 1979. M i l l e r , C . L . , Denner, P . R . , & R i cha rdson , V . E . A s s i s t i n g the psychosoc ia l problems of cancer p a t i e n t s : A review of cu r ren t r e s e a r c h . I n t e r - na t i ona l Journa l o f Nurs ing S t u d i e s , 1976, 13_, 161-166. M i l l e r , M.W., & Nygren, C . L i v i n g w i th cancer - Coping b e h a v i o r s . Cancer  N u r s i n g , 1978, 1_, 297-302. ~~ M o l t e r , N.C. Needs of r e l a t i v e s of c r i t i c a l l y i l l p a t i e n t s : A d e s c r i p t i v e s tudy . Heart & Lung, 1979, 8 , 332-339. Moos, R . H . , & T s u , V . D . The c r i s i s o f p h y s i c a l i l l n e s s : An overv iew. In R .H . Moos ( E d . ) , Coping w i th p h y s i c a l i l l n e s s . New York: Plenum, 1977. N e l s o n , K.R. The fu tu re i n cancer n u r s i n g . In Proceedings of the  na t i ona l conference on cancer n u r s i n g . Ch icago ! American Cancer S o c i e t y , 1973. Pa rsons , J . B . A d e s c r i p t i v e study of i n te rmed ia te stage t e r m i n a l l y i l l cancer p a t i e n t s at home. Nurs ing D i g e s t , 1977, 5 , ( 2 ) , 1-26. P e l l e t i e r , K .R. H o l i s t i c med ic ine : From s t r e s s to optimum h e a l t h . New York : D e l l , 1iWTT. Reeder, S . J . The impact o f d i s a b l i n g hea l t h c o n d i t i o n s on f am i l y i n t e r - a c t i o n . Unpubl ished doc to ra l d i s s e r t a t i o n , U n i v e r s i t y o f C a l i f o r n i a , Los Ange les , 1975. R i s t , R . C . On the means of knowing: Q u a l i t a t i v e research i n e d u c a t i o n . New York U n i v e r s i t y Educat ion Q u a r t e r l y , Summer 1979, 17 -21 . R o l l i n , B. F i r s t , you c r y . P h i l a d e l p h i a : L i p p i n c o t t , 1976. Rosenbaum, E . H . L i v i n g w i th c a n c e r : A guide f o r the p a t i e n t , the f a m i l y and f r i e n d s . New York : P raege r , 1975. Ross , J .W. Coping w i th ch i l dhood cance r : Group i n t e r v e n t i o n as an a i d to parents i n c r i s i s . S o c i a l Work i n Hea l th C a r e , 1979, 4 , 381-391. R o t h w e l l , S . Cancer : Advances i n p r e v e n t i o n , sc reen ing and d i a g n o s i s . The Canadian Nurse , 1983, 79 ( 2 ) , 10-14. Ryan , C , & Ryan, K .M. A p r i v a t e b a t t l e . New York : Fawce t t , 1979. S a r t o n , M. Recove r ing : A j o u r n a l . New York : W.W. Nor ton , 1980. Schnaper , N. Psychosoc ia l aspects of management of the p a t i e n t w i th c a n c e r . Medica l C l i n i c s o f North Amer i ca , 1977, 61^, 1147-1155. Schwar tz , H . , & J a c o b s , J . Q u a l i t a t i v e s o c i o l o g y : A method to the madness. New York : The Free P r e s s , 1979. She ldon , A . , R y s e r , C P . , & K r a n t , M . J . An i n t e g r a t e d f am i l y o r i e n t a t e d cancer care program: The repo r t of a p i l o t p r o j e c t i n the s o c i o -emotional management of ch ron i c d i s e a s e . Journa l o f Chron ic  D i s e a s e s , 1970, 2 2 , 743-755. S m i t h , E .A . Psychosoc ia l aspec ts o f cancer p a t i e n t c a r e : A s e l f i n s t r u c - t i o n a l t e x t : New York : M c G r a w - H i l l , i y / b . Son tag , S . I l l n e s s as metaphor. New York : V in tage Books, 1978. Spee r , J . J . Impact o f husband i l l n e s s on f am i l y f u n c t i o n i n g . Unpubl ished doc to ra l d i s s e r t a t i o n , U n i v e r s i t y of M inneso ta , 1973. Speese-Owens, N. P s y c h o l o g i c a l components o f cancer n u r s i n g . In R. Bouchard-Kur tz & N. Speese-Owens ( E d s . ) , Nurs ing care of the cancer  p a t i e n t (4th e d . ) . S t . L o u i s : Mosby, 1981. S p i e g e l , D . , Bloom, J . R . , & Yalom, I. Group support f o r p a t i e n t s w i th m e t a s t a t i c c a n c e r . A r c h i v e s of General P s y c h i a t r y , 1981 , 38_, 527-533. S p r a d l e y , J . P . The ethnographic i n t e r v i e w . New York : H o l t , R inehar t & Wins ton , 1979"; S v e i n s o n , K.M. Learn ing to l i v e w i th cance r . Toronto : C l a r k e , I rwin & C o . , 1974. U . S . Department o f Hea l th and Human S e r v i c e s . Coping w i th cance r : A  resource f o r the hea l t h p r o f e s s i o n a l . Be thesda, Md . : Nat iona l Cancer I n s t i t u t e , 1980. Vachon, M . L . S . , Freedman, K . , Formo, A . , Rogers , J . , L y a l l , W . A . L . , & Freeman, S . J . J . The f i n a l i l l n e s s i n cancer : The widow's persepec-t i v e . Canadian Medica l A s s o c i a t i o n J o u r n a l , 1977, V17, 1151-1154. Vachon, M . L . S . , L y a l l , W . A . , Rogers , J . , Formo, A . , Freedman, K . , Cochrane, J . , & Freeman, S . J . J . The use of group meetings w i th cancer p a t i e n t s and t h e i r f a m i l i e s . In J . Tache, H. Se lye & S . B . Day (Eds . ) Cancer  s t r e s s , and dea th . New York : Plenum, 1979. , 169 Van Scoy-Mosher, C. The oncology nurse in independent professional practice. Cancer Nursing, 1978, 1_, 21-28. Watson, P.G. Psychosocial aspects of the cancer experience. The Canadian  Nurse, 1978, 74, (7), 45-48. ~~ Wegmann, J.A., & Ogrinc, M. Oncology nursing c o n f l i c t : A case present-ation of h o l i s t i c care arid the family in c r i s i s . Cancer Nursing, 1981 , 4, 43-48. Weisman, A.D., & Worden, J.W. The e x i s t e n t i a l p l i g h t in cancer: S i g n i f i -cance of the f i r s t 100 days. International Journal of Psychiatry in  Medicine, 1976-77, 7, 1-15. : Welch, D. Planning nursing intervention for family members of adult cancer patients. Cancer Nursing, 1981, 4_, 365-370. Welch, D., F o l i o , J . , & Nelson, E. The development of a specialized nursing assessment tool for cancer patients. Oncology Nursing Forum, 1982, 9 (1), 37-44. Wellisch, D.K., Mosher, M.B., & Van Scoy, C. Management of family emotional stress: Family group therapy in a private oncology practice. International Journal of Group Psychotherapy, 1978, 28_, 225-231 . White, R.W. The enterprise of l i v i n g : A view of personal growth (2nd ed.). New York: Holt, Rinehart & Winston, 1976. Worden, J.W., & Sobel, H.J. Ego strength and psychosocial adaptation to cancer. Psychosomatic Medicine, 1978, 40, 585-592. 170 APPENDICES 171 Appendix A Informat ion and Consent Form My name i s S a l l y Thorne. I am a r e g i s t e r e d nurse doing Graduate work a t the School of N u r s i n g , U n i v e r s i t y of B r i t i s h Columbia. S ince September 1981, I have been a s s o c i a t e d w i th the Outpa t ien t Oncology C l i n i c a t [ ] H o s p i t a l . My exper ience a t the C l i n i c lead to my i n t e r e s t i n l e a r n i n g more about what a fam i l y goes through when one member has cance r . The way I hope to l e a r n more about t h i s i s to i n t e r v i ew some of the f a m i l i e s in which one member i s c u r r e n t l y under the care of Dr . [ ] . I f you and a t l e a s t one o ther member of your f am i l y agree to p a r t i c i p a t e i n t h i s s tudy , I w i l l arrange a convenient t ime f o r an i n t e r v i e w , probably i n your home. I w i l l then ask you and your fami l y ques t ions about changes i n day to day r o u t i n e s , household r e s p o n s i b i l i t i e s and out look on l i f e s i n c e you were diagnosed as having c a n c e r . I w i l l i n v i t e you to share w i th me any of your ideas about how cancer a f f e c t s a f a m i l y . I f you w i s h , you may re fuse to answer any ques t ions dur ing the i n t e r v i e w . The i n t e r v i e w w i l l be tape reco rded , but every e f f o r t w i l l be made to avo id us ing names or i d e n t i f y i n g in fo rmat ion on the t a p e . The only people who might l i s t e n to the tape w i l l be mysel f and my t h e s i s a d v i s o r s . Excerp ts of the i n te r v i ew might be inc luded in w r i t t e n repor ts of my s tudy , but a g a i n , no names or i d e n t i f y i n g f a c t o r s w i l l appear . Upon complet ion of my s tudy , the tapes w i l l be e rased . My reasons f o r reques t ing tape reco rd i ng of i n te r v i ews a re t ha t i t w i l l enable me to s e r i o u s l y cons ide r any concerns or i ssues expressed by your f a m i l y , and to compare them wi th the ideas of other f a m i l i e s p a r t i c i p a t i n g i n the s tudy . Approximate ly s i x weeks a f t e r t h i s i n i t i a l i n t e r v i e w , I would request a second fam i l y i n t e r v i e w f o r the purpose of c l a r i f y i n g i s s u e s you have r a i s e d and avo id ing any misunders tand ings . Th is i n t e r v i e w would be conducted and recorded i n the same manner as the f i r s t . Whether you p a r t i c i p a t e i n t h i s study or not w i l l have no e f f e c t whatsoever upon your t reatment and care i n Dr . [ ] ' s c l i n i c . I f you agree to p a r t i c i p a t e , then l a t e r change your mind, you w i l l be f r e e to withdraw your consent . Al though I would p r e f e r to i nc lude anyone whom you cons ide r to be a member o f your f am i l y i n the i n t e r v i e w , each member's r i g h t not to p a r t i c i p a t e w i l l be respected a t any t ime . I a n t i c i p a t e tha t the b e n e f i t of t h i s study w i l l be to he lp me l ea rn more about what f a m i l i e s exper ience when a member has c a n c e r , so tha t I can communicate t h i s knowledge to o thers i nvo l ved in working w i th f a m i l i e s l i v i n g w i th cancer . I f you have any ques t ions about the study o r about what to expect i f you dec ide to p a r t i c i p a t e , p lease fee l f r ee to con tac t me through the nurse c l i n i c i a n at [ ] H o s p i t a l ' s O u t - P a t i e n t Oncology C l i n i c . * * * * * I have d i scussed the nature of t h i s study w i th my f am i l y and we have agreed to p a r t i c i p a t e . date s igna tu re of p a t i e n t 173 Appendix B Sample Quest ions f o r I n i t i a l In terv iew 1. What has i t been l i k e f o r you as a f am i l y to have a member w i th cancer? 2. What are the major t h ings tha t have happened to your f am i l y s i nce (name of p a t i e n t ) was diagnosed w i th cancer? 3. How has (name of p a t i e n t ) ' s having cancer a f f e c t e d your f am i l y l i f e ? - ( i f c l a r i f i c a t i o n necessary) I am e s p e c i a l l y i n t e r e s t e d i n such th ings as day to day r o u t i n e s , who does what around your house, th ings you do together as a f a m i l y . 4. In your o p i n i o n , what i s i t about the cancer exper ience t ha t accounts f o r these changes? 5. Has your f am i l y ever exper ienced any th ing tha t a f f e c t e d you t h i s way before? - I f so , how i s t h i s cancer exper ience s i m i l a r or d i f f e r e n t ? 6. Has having a member w i th cancer a f f e c t e d your f a m i l y ' s out look on 1 i f e i n any way? - I f so , how or why do you th ink t h i s happens? 7. What i s i t l i k e f o r you to t a l k about the exper ience? - ( i f c l a r i f i c a t i o n necessary) What k inds of th ings do you t a l k about w i t h i n your f am i l y i n r e l a t i o n to the cancer? How does i t f e e l to t a l k about what you are going through to people ou ts ide of your f am i l y? Appendix C The U n i v e r s i t y of B r i t i s h Columbia School of Nurs ing T-206, Acute Care Un i t 2211 wesbrook Ma l l Vancouver, B . C . , V6T 1W5 Dear I am a graduate s tudent i n Nurs ing a t U . B . C . As one pa r t of my t h e s i s research I have been i n t e r v i e w i n g f a m i l i e s to f i n d out how they are a f f e c t e d by the f a c t t ha t one of t h e i r adu l t members i s l i v i n g w i th cance r . On [ d a t e ] , I spent some time w i th your pa ren t s , and they shared t h e i r views about the sub jec t w i th me. They a l s o asked t ha t t h e i r c h i l d r e n be g iven an oppor tun i t y to t e l l t h e i r s i de of the s t o r y , and gave me your address . The in fo rmat ion I am ga the r ing from f a m i l i e s i n my study i s g e n e r a l l y any th ing they wish to t e l l me tha t would i l l u s t r a t e how having cancer i n the f am i l y a f f e c t s members' out look on l i f e , day to day a c t i v i t i e s , and r e l a t i o n s h i p s w i t h i n the f am i l y and w i th people ou t s i de the f a m i l y . I t i s my b e l i e f tha t i f hea l th care workers b e t t e r understood the f am i l y e x p e r i e n c e , we cou ld help f a m i l i e s w i th cancer l i v e b e t t e r . I f you are i n t e r e s t e d in shar ing w i th me any of your ideas or s t o r i e s , I would be very p leased to r e c e i v e them. P lease understand tha t you are under no o b l i g a t i o n to rep l y to t h i s l e t t e r ; i t i s merely an i n v i t a t i o n to c o n t r i b u t e to the research i f you so d e s i r e . Any r e p l i e s w i l l be t r ea ted as c o n f i d e n t i a l , and anonymity of i n fo rmat ion i s assu red . I f you dec ide you would be i n t e r e s t e d i n making a c o n t r i b u t i o n to my knowledge of the expe r i ence , p lease j o t down your ideas and send them to the address above. Yours s i n c e r e l y , S a l l y Thorne, R .N , B . S . N . 

Cite

Citation Scheme:

        

Citations by CSL (citeproc-js)

Usage Statistics

Share

Embed

Customize your widget with the following options, then copy and paste the code below into the HTML of your page to embed this item in your website.
                        
                            <div id="ubcOpenCollectionsWidgetDisplay">
                            <script id="ubcOpenCollectionsWidget"
                            src="{[{embed.src}]}"
                            data-item="{[{embed.item}]}"
                            data-collection="{[{embed.collection}]}"
                            data-metadata="{[{embed.showMetadata}]}"
                            data-width="{[{embed.width}]}"
                            async >
                            </script>
                            </div>
                        
                    
IIIF logo Our image viewer uses the IIIF 2.0 standard. To load this item in other compatible viewers, use this url:
http://iiif.library.ubc.ca/presentation/dsp.831.1-0095647/manifest

Comment

Related Items