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Childhood cancer and family life : conceptualizing the perception of the sibling McLaughlin, Katherine E. 1982

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CHILDHOOD CANCER AND CONCEPTUALIZING  FAMILY  THE PERCEPTION  LIFE:  OF THE SIBLING  by  KATHERINE  E . MCLAUGHLIN  B.Sc.N., U n i v e r s i t y  o f Saskatchewan,  1959  A THESIS SUBMITTED IN PARTIAL FULFILLMENT THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE  STUDIES  (The S c h o o l o f N u r s i n g ) We  accept t h i s  thesis  to the required  as conforming standard  THE UNIVERSITY OF BRITISH COLUMBIA October  1982  (c) K a t h e r i n e E . M c L a u g h l i n ,  1982  OF  In  presenting  requirements of  British  it  freely  agree for  this for  an  available  that  I  by  understood  that  his  or  be  her or  shall  Date  DE-6  (3/81)  the  University  and  study.  I  copying  granted  by  the  of  publication be  allowed  Columbia  of  make  further this  head  representatives.  not  the  shall  of  The U n i v e r s i t y o f B r i t i s h 1956 Main M a l l Vancouver, Canada V6T 1Y3  at  of  Library  permission.  Department  fulfilment  the  extensive  may  copying  f i n a n c i a l gain  that  reference  for  purposes  or  degree  agree  for  permission  scholarly  in partial  advanced  Columbia,  department  for  thesis  It  this  without  thesis  of  my  is  thesis my  written  -  i i-  ABSTRACT CHILDHOOD CANCER AND  CONCEPTUALIZING This view  was  was  living  treated  designed  in a  f o r cancer.  family  to investigate where  Specifically,  when a n o t h e r  child  another  the  sibling's  child  the purpose  to c o n c e p t u a l i z e the s i b l i n g ' s  living  LIFE  THE PERCEPTION OF THE SIBLING  study  of  FAMILY  was  being  of the study  p e r c e p t i o n o f day t o day  i n the f a m i l y i s being  treated for  cancer. Eight in  children  the study.  child,  constant ory,  individually  elicicted  comparative  concepts  process  of r e d e f i n i n g  to  descriptions of d a i l y  identified  status  tion  as e m e r g i n g  of the i l l c h i l d ,  i n behavior.  This  a way as t o make l i f e results that  was  than  the a d u l t ' s .  the  literature  nursing  research  implications  study  support  normality.  The  as t h e c e n -  appeared  problems i n such  other  of the world  the f i n d i n g s in  for elucidating practice  framework o f Orem's g e n e r a l  the-  t h e d a t a were t h e  of normality  to process  view  resulted  f o r nursing  grounded  ( G l a s e r 1978, p . 5 7 ) .  Relating  has  Using the  identified  redefinition  the c h i l d ' s  life.  f o r the majority of the v a r i a -  viable  of t h i s  from  each  which the  and a new  normality  make i t p o s s i b l e f o r s i b l i n g s  indicates  participated  during  associated with  v a r i a b l e which accounted  The  families  o r i n a group,  process  special  tral  t o two  Two c o n v e r s a t i o n s e s s i o n s were h e l d w i t h  either  interviewer  belonging  specific  r e s e a r c h which i s different  of t h i s  study  suggestions  the s i b l i n g ' s  view.  to for The  are discussed within the  theory of nursing.  - i i i-  TABLE OF CONTENTS Page Abstract  i i  Acknowledgements  vi  CHAPTER I:  INTRODUCTION  1  CHAPTER I I :  Introduction t o Problem and Purpose . . . . . . . Background t o the Problem Statement of Problem and Purpose D e f i n i t i o n o f Terms Significance of This Study f o r Nursing. . . . . Limitations of the Study Summary o f the Introduction REVIEW OF THE LITERATURE  1 4 6 6 7 8 8 9  Introduction S i b l i n g s of Chronically 111 Children. . . . . . Siblings Methodology Summary o f the L i t e r a t u r e Review  9 10 15 18 19  METHODOLOGY  21  Introduction Obtaining the Sample C r i t e r i a f o r Sample Selection and Underlying Rationales Making Contact with the S i b l i n g s . . . . . . . . E t h i c a l Considerations A. The Parental Consent B. Consent of the S i b l i n g s C. The Parent as Gatekeeper D. The Researcher's Responsibility to Consent Givers . . . . The Interview as a Data C o l l e c t i o n Tool i n Q u a l i t a t i v e Research with Children . . . . C o l l e c t i n g the Data The Circumstances of the Interviews . . . . . . A. Interviews with the F i r s t Family. . . . B. Interviews with the Second Family . . . C. Why a Second Interview with the Same Population was Conducted . . . . Analysis of the Data Suinmary  21 21  CHAPTER I I I :  23 26 27 28 29 30 30 31 32 35 35 37 40 41 43  -  CHAPTER TV:  CHAPTER V:  CHAPTER VI:  iv -  THE CONCEPTUALIZATION OF THE DATA  44  Introduction The Nature and Sources of Information A v a i l a b l e t o the S i b l i n g s A. The Seriousness of the I l l n e s s B. Medication Taking C. Diagnostic and Treatment Procedures . . The Concepts and Their Indicators A. Special Status f o r the 111 C h i l d . . . . 1. Creation of Special Status f o r the 111 C h i l d by the Parent . . . . 2. Conferring o f Special Status on the 111 C h i l d by the S i b l i n g s . . . 3. S i b l i n g s ' Requirements f o r Outsiders to Confer Special Status on the 111 C h i l d 4. Maintaining Special Status of the 111 C h i l d B. A New Normality 1. Changes i n R e s p o n s i b i l i t y 2. Concerns About the 111 C h i l d . . . . 3. Stress Associated with I l l n e s s and Treatment Variables . . . . . . 4. M o r t a l i t y o f the 111 C h i l d 5. What i s Normal? . 6. Why Redefine Normal The Relationship Between the Concepts and the Proposal of a Core Variable. . . Summary  44 45 45 47 49 52 52 52 56  59 59 60 61 63 65 69 70 72 73 74  DISCUSSION  75  Introduction Comparing Themes I d e n t i f i e d i n the L i t e r a t u r e t o Themes Found i n t h i s Study. . . . A. Negative Feelings Such as Anger and Resentment B. I s o l a t i o n and Deprivation C. Change Comparing Concepts I d e n t i f i e d i n t h i s Study t o Similar concepts Discussed i n the L i t e r a t u r e . A. Special Status of the 111 C h i l d . . . . B. Redefining Normality Relating the Methodology t o the L i t e r a t u r e . . . Summary of the Discussion  75  SUMMARY AND CONCLUSIONS . . . Summary of This Study Suggestions f o r Further Research Implications f o r P r a c t i c e  88 88 89 91  75 76 77 78 80 80 81 83 87  -  V  REFERENCES  93  APPENDICES  100 A. B. C.  Parent's Consent Form Children's Consent Form Interview Schedule  100 102 103  ACKNOWLEDGEMENTS  I  am deeply  participation been  grateful  to several  and encouragement  this  people thesis  without  whose  c o u l d not have  completed. First  shared  o f a l l I would  their  experiences  like with  t o thank me  the c h i l d r e n  and t h e i r  who  parents f o r  encouraging them t o do so. I Elfert  would  like  t o thank  and V i r g i n i a  my  Hayes-Morris  committee for their  members,  Helen  guidance  c o n t r i b u t i o n i n the r e s e a r c h and w r i t i n g o f t h i s  and  thesis.  I a p p r e c i a t e the h e l p o f Dr. Mavis Teasdale who f a c i l i t a t e d the p r o c e s s o f o b t a i n i n g a study p o p u l a t i o n . And  finally,  I owe a s p e c i a l  thanks t o Joe, Kevin, and  Megan who have been s u p p o r t i v e and accommodating my graduate  studies.  throughout  /  CHAPTER I :  -  INTRODUCTION  INTRODUCTION TO PROBLEM AND PURPOSE The with  change  cancer  i n the s u r v i v a l  has r e s u l t e d  With the achievement psychological,  as  i n the goal of a "cured"  and developmental  physical  affected child.  of t h i s goal a p o s s i b i l i t y , the s o c i a l ,  assume the same degree dule  rates of children  requirements  of importance  well-being.  of the c h i l d  i n the treatment  Hopefully,  sche-  the r e s u l t s  of  treatment w i l l be a m e n t a l l y h e a l t h y c h i l d f u n c t i o n i n g i n an age a p p r o p r i a t e manner (van Eys 1977). In North much  America,  society  of the r e s p o n s i b i l i t y  meet h i s s o c i a l ,  has c o n f e r r e d on the f a m i l y  f o r h e l p i n g the i n d i v i d u a l  psychological,  and developmental  require-  ments.  Where s i b l i n g s a r e a component o f the f a m i l y  sibling  r e l a t i o n s h i p s and i n t e r a c t i o n s have been  as important v a r i a b l e s  affect  of  identified  Nurses who view the f a m i l y as  i n d i c a t e t h a t an i l l n e s s  members  system,  i n the development and s o c i a l i z a t i o n  p r o c e s s (Schaveneveldt 1979). a system  to  the system  i n one f a m i l y member w i l l  i n some  way  (Horton  1977).  Understanding the impact of c h i l d h o o d cancer on the s i b l i n g s thus assumes i n c r e a s i n g importance  i n attempting t o achieve  the goal of a "cured" c h i l d . Coddington brother  or s i s t e r  (1971)  identified  requiring  hospitalization  l i f e experience f o r the s i b l i n g . because  serious  of  a  as a s t r e s s f u l  W i t h i n a system's context,  t h i s k i n d o f experience i s s t r e s s f u l ,  the impact  illness  understanding  of c h i l d h o o d cancer on s i b l i n g s assumes a s i g n i -  - 2 -  ficant  importance  cured  cancer  siblings  has been  the  siblings  living  scribed  feelings  the goal  Gayton,  of  a  success  with  a child  perception Lazarus  have  1975).  the  Lansky  views o f They  de-  toward  the  to  parent  Tavormina  him/her.  about  the  Lavigne  and  who  i s chronically  strategies  problem  family  cancer  will  i n f l u e n c e how of pediatric  effect i l l  of coping  sibling's  i n a  sibling's  of the  (Murphy  another  and Tucker  variables.  the long-term  when  (1979);  a l l studied  living  siblings  and  that  The  their  given  and  (1975)  had w e l l  siblings.  being  i l l  who  resentment  sibling  i n the process  of  Burton  related  and  date,  of chronically  children  the  psychological  of the coping  Inherent  of  Friedman,  particular suggest  on  fashion to  study.  i l l  of childhood  limited.  Smith  (1979)  limited  attention  well  t o be  (1979);  colleagues  a  The p a r e n t s  jealousy  between  Carandang  the presence  to siblings  situation  of  Clark,  assessing  on  achieve  f o r further  f o r the extra  appeared  by  of chronically  Cairns,  living  need  this  Communication  and  a  a t home.  of  child  Ryan  to  i n only  relating  parents  effect  illness  reported  indicates  interviewed  i l l  are affected  literature  children  the  attempting  child. How  and  i n  Gayton  by and  sibling  i s related  to the  sibling. i s the  perception  individual's  Mechanic of  i s being  (s)he i s affected.  cancer  reaction  on t h e  1974;  child  (1977);  p a t i e n t s t o date  day  1974; to  day  treated for The has  research concen-  - 3-  trated  on p a r e n t s '  reports  logical  variables.  research  reported  There which  Developments to  current  through ests,  views  between  and  suggests  that  problem-solving accumulating  the  the  as  there  established  and  inter-  determiners  of  i s not a simple actions,  of choice  process.  study  report  The  that  per-  corre-  but there  is  d i r e c t s behavior.  was  specified  a  individual  constructive  is  constantly  aspect  limited,  illness  Because t h e scope o f  i t was  not p o s s i b l e  of t h i s  i n depth.  study  t o exHowever,  i s an a t t e m p t t o  a new  appropriate.  Glaser  whereby  that  when t h e r e o r when  a  i s a lack researcher  and  Strauss  and a n a l y z i n g  i t i s possible  situation.  (1967)  have  data i n a  involves  infor-  study i s  described  a  factor-searching  to conceptualize  The method  of  wishes t o  at a situation, a factor-searching  method o f g a t h e r i n g  a  says  a phenomenon,  look  of the  experience.  (1979)  about  thus,  also.  a d d i t i o n a l data about s i b l i n g ' s p e r c e p t i o n  Diers  describe  by  t o b u i l d i n t o the perception,  of the findings  contribute  study  contributed  of motivational  a l l of these aspects of perception  mation  have  (1973)  i t i s determined  information  present  take  Bruner  events  i s a developmental  plore  psychology  that  or function  be a l a c k o f  on t h e s i b l i n g ' s p e r c e p t i o n .  expectations  external  psycho-  (1969), i n one o f h i s many d i s s e r t a t i o n s on p e r c e p -  Piaget  there  to currently  the importance  He d e m o n s t r a t e d  some mechanism  tion,  focuses  of perception.  purposes,  lation  appears  i n cognitive  h i s research  ception.  and a s s e s s m e n t o f s p e c i f i c  rather  than  constantly  com-  - 4 -  paring,  coding,  researcher is  not  fic  to  for  a  nursing  theory  testing of  or  of  a  when  THE  in  another  child  of  the  literature  number  studies  response  the  of  lings In  of  family  Kushner,  1973;  parents  being  the. more  gical decided of  the  al  1979;  the  theory.  It  study  speci-  utilized  perception of  the  family  by  and  recent of  the  effect  was  i l l  child  not  by  siblings  chronic  day  being  cancer  with  1969;  the  with  are  the  based  on  Gayton  but  his  et  al  found  a  to  Albin,  of  the  her  siblings 1977;  on  "family" sib-  parents. psycholo-  variables or  and  However, the  by  the  Lascari  reports of  the  of  responses  study  on  role  (Binger,  1979).  themselves there  the  related  constituting  illness  1977;  articles  Mikkelsen  subjects  to  researcher  Embleton  literature  Carandang  this  and  and  investigator of  related  childhood  1977;  the  presented  testing  to  Z'oger,  Pearse  examination  the  This  in  allows  i t i s more  sibling's  significant  were  but  situation.  oncology,  closer  "discover"  theory  pediatric  Stehbens  to  method  PROBLEM  review  Feurstein,  This  cancer.  BACKGROUND TO In  data.  conceptualize the  living  treated  for  description  method  day  analyzing  generate  method  than  this to  a  to  and  being  perception (Cairns  Lavign  et  et  al  not  by  1979) . In the  existing  siblings  cancer  literature  themselves,  patients,  there  that  working appears  describes, but with to  families  have  been  again of  pediatric  little  direct  -  contact than  between h e a l t h  on  a  social  5  -  professionals  basis.  Parents  concern regarding the s i b l i n g s with  interventions  very  much  the  and  and  suggested.  intermediary  the  siblings  occasionally  other  expressed  t h e s e w o u l d be d i s c u s s e d ,  The  parent  between  thus  seems t o  siblings  and  be  health  workers. Lavigne tric  cancer  therapy were  was  rarely  available current  the tion  centers  available  for  seen,  nine  and  needed.  level  of  i s routinely  literature available  child's  its  requirements.  ( L e r n e r 1976). determine atic  of  studying  to,  Within  the The  i f there  This  for  This  that  to his/her  individual  reported  question that  "Does  more  siblings  i s not  siblings  therapy  was our  rigorous  of childhood  investigator's  there  world  and  review  enough  is a with  study  a  developmental  i s not  the c h i l d ' s  need  view.  the  same  must be  of  informa-  in, a  designed  of to  situa-  situation paradigm,  as  studied  f o r more s t r u c t u r e d  siblings  was  interaction  p e r c e p t i o n of that  c h i l d ' s view  intervention  tients.  indicate  46).  reaction  i s related  view  the  pedia-  a t p r e s e n t t o answer t h a t q u e s t i o n .  tion  child's  five  posed  needed  suggested  six reported  reported individual  Lavigne  (p.  that  siblings,  knowledge  patients?"  The  i n a survey t o which twenty  responded  as  intervention cancer  (1980) f o u n d  childhood explore  the  to  sytem-  cancer one  the  adult's  i n depth and  and  way  paof  - 6-  STATEMENT The  OF  purpose  sibling's in  PROBLEM of  will  PURPOSE  this  study  was  to  conceptualize  p e r c e p t i o n o f day t o day l i v i n g  the family i s being The  specific  treated  questions  when  the  another  child  of this  study  f o r cancer.  which  the report  address are: 1.  What  concepts  tion  c a n be d e r i v e d from  of  the  child 2.  What  DEFINITION The the  AND  terms  purpose  Being  OF  relate  of  to the siblings  the sibling's day  to  i n the family i s being i s the relationship  day  description  living  treated  between  percep-  when  a  f o r cancer?  these  concepts?  TERMS following  are defined to assist and t h e problem  f o r cancer:  receiving  medication, cal  experience  of the study  treated ly  which  radiation undergoing  The c h i l d therapy,  with  statement.  cancer  taking  or scheduled  i n clarifying  i s current-  chemotherapeutic  t o undergo  a  surgi-  procedure.  Concept: off with  " A b s t r a c t i o n s grounded i n the data, but s e t s p e c i f i c d e f i n i t i o n s " ( D i e r s 1979, p . 1 0 1 ) .  Conceptualize: ships .  To i d e n t i f y  concepts  and t h e i r  relation-  Perception: T h e p r o c e s s b y w h i c h we o b t a i n , t r a n s f o r m , organize, and s t r u c t u r e information arising from t h e w o r l d i n s e n s e d a t a o r memory, a n d r e s p o n d t o t h a t d a t a i n a s e l e c t i v e and d i s c r i m i n a t i v e manner ( a d a p t e d from G i b s o n 1969) .  - 7 -  SIGNIFICANCE OF THIS STUDY FOR  ing  Orem  (1980) has  that  a  unable this  to  need  ities  f o r nursing  premise  them  to  that  by  take  requirements f o r s e l f - c a r e may  the  individual.  nursing  the  system may  nursing  self-care  system  being  treated  profession  to day  demand f o r t h a t  (1967),  calculating whenever the tively the  the  population.  to  f o r the  those  of  of  of  functions  the  the  of  the  of  therapeutic  sibling's  i n the  per-  family i s nursing  therapeutic s e l f - c a r e  I t would seem to be p o s s i b l e ,  which can  be  s e l f - c a r e demand  applied i n  for children  i n c r e a s e i n demand i s  siblings  which  form  and  the  substan-  sample  in  study. Family  member  will  t h e o r i s t s i n d i c a t e t h a t an i l l n e s s i n one affect  (Horton  1977).  treated  f o r cancer  for  of the  give guidance to the  generate theory  therapeutic  to  which  comparative a n a l y s i s method of G l a s e r  reason  similar  One  calculation  calculation  u s i n g the constant Strauss  required.  will  culture,  From time to time,  l i v i n g when a c h i l d  f o r cancer  capabil-  demand i s h e a l t h r e l a t e d ,  Conceptualization  i n the  and  is  Underlying  exceed the c a p a b i l i t y  increased  i s the  demand.  c e p t i o n of day  be  individual  specialized  experience,  the  a  have  self-care actions.  I f the  f o r nurs-  for self-care.  people  age,  general theory  e x i s t s when an  requirements  conditioned  enable  s t a t e d i n her  meet h i s  i s the  NURSING  others,  it  To  is  a l l members of understand why  the  family  i n some  l i v i n g with a c h i l d  i s d i s t u r b i n g f o r some s i b l i n g s necessary  to  family  know  more  about  way  being  and  not  how  the  - 8 -  sibling  views the s i t u a t i o n .  This information  i s essential  f o r d e s i g n i n g programs of a n t i c i p a t o r y guidance f o r f a m i l i e s of c h i l d r e n with  cancer.  LIMITATIONS OF THE STUDY L i m i t a t i o n s of the study of experiences  arose  from the l i m i t e d number  t h a t were be sampled w i t h i n the scope of t h i s  study. Limitations limited  to  experience  also  arose  the i n t e r v i e w rather  than  from  data  collection  being  amd  consequently  t o remembered  current  experience.  This  issue i s  addressed i n the d i s c u s s i o n . In  the two f a m i l i e s which  composed the study child.  the  ill  child  was the youngest  the  ill  child  i n the s i b l i n g  in  the  sibling's  order  perception  of  sample,  I f the p o s i t i o n o f  i s a significant factor  family  experiences,  this  c o u l d be a l i m i t a t i o n .  SUMMARY OF THE INTRODUCTION I t appeared t h a t a study perception i s being study  practice.  of day t o day l i v i n g  t r e a t e d f o r cancer  could  t o c o n c e p t u a l i z e the s i b l i n g ' s when a c h i l d  i n the f a m i l y  would be t i m e l y and t h a t such a  contribute to nursing  research  and t o n u r s i n g  -  CHAPTER I I :  9 -  REVIEW OF THE LITERATURE  INTRODUCTION The  purpose  twofold.  of the l i t e r a t u r e  The r e v i e w  for  a  study  about  the  family i s being  point  o f view  fies  research  of the l i t e r a t u r e  day t o day  when  t r e a t e d f o r cancer,  and  child in  undertaken  from t h e  perception.  theoretical  The  literature  the  literature  children  cancer  healthy  This  siblings  done  itself  Finally,  of  to  to  help  aid in  new  i s reviewed  m e t h o d o l o g y t o be employed  chil-  a portion of  review  on t h e  t h e impact  on t h e  of  a  child  those  of the i l l  i n the  studies of  child.  Death  emotions,  and  perception of the i l l n e s s  i s reviewed a  of  chronically i l l  set of experiences,  constructing  literature  of  excludes  the s i b l i n g ' s  Literature  exacerbations.  literature  illness  review  a chronic  to siblings  to clarify  f o l l o w i n g the death a  as b e i n g  acute  siblings  long-term  literature  that alter  experience. relative  i t will  introduces  behaviors  which  Therefore,  included i n this  siblings,  family.  limited.  referring  that  with  specifically  i s very  has been  assumption  identi-  orientations  illness  referring  with  I t also  that perception.  life-threatening  dren  study i s  another  H e a l t h p r o f e s s i o n a l s speak o f c a n c e r although  i n this  d e m o n s t r a t e s t h e need  living  of the s i b l i n g ' s  conceptualizing  review  theory  which of  c o u l d be sibling  helpful  behavior.  which g i v e s d i r e c t i o n t o t h e  f o r data c o l l e c t i o n  and a n a l y s i s .  - 10 -  SIBLINGS  OF  The one  study  way  of  childhood a  data  dren's  Piers  score than  results means  limits  fibrosis  a  do  that  the  inkblot  The  in  that  i n healthy  the instruments  the  used  on t h e f i r s t  two  study  author  of the chronic  increased with  of chronic of  f o r the suggests  not adequate  illness.  within  does  of their  utilization  were  groups  not inci-  cystic  psychological  adaptations The  The the  an  In the discussion the concept  self-  children.  children  a negative  total  between  This of  (Gay-  was  f o r both  hypotheses  Chil-  Scale  differences  test.  with  Test  Harris  scores  cystic  Missouri  f o r normal  of  o f 5 a n d 13  Inkblot  Piers  functioning  i t support  impact  the  disturbance  suggest  t h e ages  1977).  of  children  Scale,  and s i b l i n g s '  of h i s family.  negative  on  by P i e r s  not negate  result  members  sible the  may  but  Tucker  significant  development.  authors  between  23  chronic  As p a r t  aspects  comparing  has been  of  child.  the Holtzman  &  researchers'  nor does  stressor  and  on  emotional  sibling  vices  no  personality  the of  and  reported  of the patients'  normal  the  the effect  Self-Concept  Tavormina  that  and  on  variables  of the i l l  siblings  Harris  indicated  support  about  collected  for siblings  tests,  dence  siblings  Series,  Friedman,  higher  on  a n d 26  Picture  concept  information  were  fibrosis the  ton,  gaining  psychological  investigation of the psychosocial  fibrosis,  using  I L L CHILDREN  of specific  illness  larger  cystic  CHRONICALLY  impact  findings  illness coping  as de-  i l l child i t i s post o measure  - 11 -  A the  second  Bene-Anthony  Apperception as  study  having  Clark,  cancer  were  compared  with  comprising  16  of  between Scale. on  mother  the  suggested  teen  that  this  patients  and  20  were  respondents  fear sharing  In  the  in  a  illness.  to  their  with  the  to  i l l  or  serve their  hospital to  ultimate  Harris pairs  valid The  during  findings did  also  not  them.  Thematic  the  only  feel Seven-  Apperception  the  two  basis  of  groups the  s i g n i f i c a n t degree social  a  negative the  setting. the  differences Piers  toward  on  studies,  and  The  between  a  6  over-indulgent. be  the  child  the  siblings  health,  increase  between  55  viewed  feelings  have  own  preceeding  clinic  could  relative  two  appeared  and  Siblings  may  identified  (Cairns,  parents  Test.  differences  be  siblings  patient-sibling  and  s i b l i n g s took  enough  for  14  female  good  diagnosed  on  hospitalized.  had  could  Siblings  as  in  finding  and  children  pairs  found  with  Thematic  significant  Relations  is  along  .the  their  No  found  this  members  There  anxiety,  out  male  patients  story.  well  that  patient  family  Test.  involved.  Family  and  which  patient-sibling  were  Scale  Forty-seven  over-protective  suggest  time  other  as  1979).  s i b l i n g s were  Bene-Anthony  authors the  and  Differences  the  the  27  were  patients  Test  in  Lansky  Harris  Relations  conducted  and  age  Piers  was  siblings years  the  Family  Test  Smith  using  body  testing  Cairns  anxiety  mortality  isolation,  and  of  et  TAT of as  image.  was  carried  al  suggests  the  siblings  susceptibility  to  -  Carandang of  sibling  by  a  illness  non-ill  aged  6%  into  two  to  The  two  All  the  of  the  The the  quently  the  an  long-term  each,  were  level,  grade  stress, found  and  that  in  to  the  divided  had  healthy  their  sex,  own  of  level  the in  the  the  homes of  discussion  showed  Also,  illness,  of  the  more w o r r y  understanding.  discussed  were  socio-economic  measure  child  children  terms  frequency  sophistication a  family  in and  interviewed  stress illness  72  one-half  level  being  of  They  matched  the  about  consisted  mothers.  groups  and  attempt  25  disease,  years  and  illness  play  parent-ill  an  the  healthy  and  of  cystic  overall  mother illness  less  more  fibrosis  from  them.  with  well-sibling  the  fre-  worry  relationships, to  his  effect.  illness,  She  did  the  were  with  effect  Taylor  in  of  (1980)  from  of  the  the  include  and  i l l  to  child These  treatment,  condition,  first  7  longterm  identified. care  of  congenital  age  effects  physical  not  the  asthma,  aspects  s o c i a l i z a t i o n , medical  child  of  ranging  of  Five  view  siblings,  children  descriptions  the  reaction  greatest  get  siblings  affected  child's  on  eliciting  childhood  included  to  illness  interviewed  the  their  were  e f f e c t s of  expressed. In  that  sample  interview  less  the  formulations  children  author  conceptualization  12  36  understanding,  expressed,  heart  Her  subjects  task  illness.  child  cognitive  and  cognitive  status.  of  years of  Piagetian  illness  on  groups  -  investigated  sibling.  15  siblings.  with  (1977)  12  three  s i b l i n g s of  and  having chil-  -  dren  with  relate  cancer  findings  Lavigne  i n her  and  Ryan  between  Laurence  ( 1 9 7 3 ) ,  findings  could  designed  a  thought  that  problems  in  children  having  congenital  heart  patients  completed  and  oldest  the  control  and  oldest  that  aggression,  disease  incidence  5 7  who  illness  hyperactivity,  However, on  the  chronically  i l l c h i l d r e n as  most  former  the  rated  had  the  ages  3 of  measuring  directly a  This  sibling's  When t h e  have  siblings  withdrawn.  and  of  of  scale,  of  children hematology  Checklist youngest  the  In  youngest  indicated  child.  no  dif-  controls  disability the  other  on  scales.  s i b l i n g s of  the  g r o u p were s i g n i f i c a n t l y children,  p l a s t i c surgery was  repeated  and  within  children on  the  were scale  irritability.  with healthy to  siblings  specified  healthy  learning  a total  pattern  s i b l i n g s of  tendency  ad-  1 3 years.  rate a  covariance  groups or  to  in They  leukemia or  3 and  1 3 of  and  and  sibling  patient's  of  were a s k e d  s o c i a l withdrawal  group  37  of  siblings  more w i t h d r a w n t h a n s i b l i n g s o f h e a l t h y the  of  6 2 s i b l i n g s of  and  in  Tew  process.  L o u i s v i l l e Behavior  analysis  cor-  discrepancies  The  between  between  the  and  patients  group," p a r e n t s  to  discrepancies  two  between  sibling  attempt  ( 1 9 7 2 )  composed  disease,  parents  sibling  found  ferences  by  each  surgery,  ( a l l but  she  Gath  at  groups  conditions).  was  They  looked  plastic  by  perhaps  s p e c i f i c to  justment  did  i n examining  done  be  nor  entity.  studies  which  cancerous  sample  ( 1 9 7 9 ) ,  study  clinic  -  with disease  findings  with  13  be  hematology  patients  were compared  s i b l i n g s t h e y were shown as more w i t h d r a w n ,  a group  i n h i b i t e d or  to  fearful,  - 14 -  and  irritable,  Male s i b l i n g s 7  and  13  females out  a l l and  Is  of  to  perception  of  from  the  attempt  give  lies of  Although first and  about  five  had  the  appears  to to  identifying external The indicate  first  status, the  be  the  change  most in  pilot 9 to  study  11  results  of  the  prob-  the  factor siblings  additional  data  the  experience  perception attitudes  nor  to  or  experience. interviewing sib-  years  of the  onset  of  illness.  not  interpersonal  illness.  remission,  reported However,  finding  or  treatment,  subsequent  are  consistent  whose b r o t h e r  state  as  exacerbation,  stage  Rather,  his  address  his  of  consequently  sibling's  defined  the  siblings  significant  and  in a different  were  than  did point  coping.  giving  not  the  a  aged  each  stages  terminal  while  the i l l n e s s  the  affecting  i n f o r m a t i o n about  children  remission,  is  does  of  conducted  cancer,  reference  view  any  (1979)  study  of  is a  experience  at r i s k  p o i n t , of  to  sister  This  problems  p a t i e n t s were h a v i n g  there  that  illness  population  understanding  lings  the  most  troubles  surgery  that  adjustment  not  having  illness  capacity? a  or aggressive.  However, t h e s t u d y  probably  plastic  the  more  group.  i t possible  relative  about  have  p a t i e n t s were  siblings  coping  to  same age  not  hematology  disabled  o f t h e h e m a t o l o g y p a t i e n t s between t h e ages o f  i n the  lems.  n o t more l e a r n i n g  appeared  that  more  but  with  relationships  with  change siblings and  the  environment. review that  of  the  siblings  literature are  as  definitely  outlined affected  above by  the  would pres-  -  ence  of  pediatric  long-term  the  of  the  studies.  tion  cancer.  ramifications  finition  to  The  to  -  How  are  experience  aspects  relevant  15  less has  literature of  sibling  the  they  are  affected,  clear.  not  been  reviewed  illness  The  and  the  siblings  de-  addressed  contains  experience  i n any  some  which  of  direcmay  be  perception.  SIBLINGS  Schvaneveldt  and  Ihinger  (1979)  state:  C  It i s reasonable t o assume t h a t t h e children share with siblings have influence on their s o c i a l i z a t i o n and d e v e l o p m e n t p r o c e s s e s (p. 453). Although able  this  about  or  and  a  a  is  of  cluded  a  of  there  is little  relationships  the  impact  who  i s being  large  body  on  review  a  will  help  sibling  of  living  ordinal  the  of  this  in  the  with  attempting  and  literature to  avail-  a  cancer.  position  Schvaneveldt  construction related  a part  for  research  of  research  which  treated  of  between  variables.  critical  theory as  a  true,  relationship  variety  conducted pose  of  sister  There tablish  be  sibling  understanding brother  must  experiences a profound personality  of  to  siblings  Ihinger for  siblings.  es-  (1979)  the  pur-  They  con-  review:  It i s too simplistic t o hope t h a t a structural variable such as o r d i n a l position could possibly have e f f e c t s on such a d i v e r s e s e t o f c h i l d and a d u l t b e h a v i o r s (p. 456).  -  They  have  identified  framework, ment  lack  problems  search  less  of as  -  sample  problems,  theoretical being  useful  constructing  16  it  theoretical  of  interpretation,  factors  than  lack  in  could  making be  formulations  and  this  in  theoretical measureof  re-  contributing  to  about  body  sibling  rela-  tionships . They  propose  investigator within  the  the  finds  following  useful  in  assumptions  viewing  the  which  this  sibling  group  family:  1.  The f a m i l y c a n be v i e w e d as h a v i n g t h r e e s e p a r a t e subsystems: s p o u s a l , p a r e n t a l - c h i l d , and s i b l i n g sibling. A l l of these subsystems function as s e m i c l o s e d systems w i t h i n the f a m i l y group.  2.  Siblings are both r e c i p i e n t s and instigators of socialization. Family interaction i s a dynamic arena i n which spouses a f f e c t each o t h e r , p a r e n t s affect children, children affect parents, and s i b l i n g s a f f e c t each o t h e r .  3.  S i b l i n g i n t e r a c t i o n i s a continuous developmental p r o c e s s not l i m i t e d t o the e a r l y " c r i t i c a l " y e a r s .  4.  The are and  5.  S i b l i n g g r o u p s have d i s t i n c t i v e g r o u p properties and c h a r a c t e r i s t i c s as do o t h e r s m a l l g r o u p s .  n a t u r e o f f a m i l y c o m p o s i t i o n and determining factors i n personality s o c i a l b e h a v i o r s o f members.  Addressing and  Kahn  and  their  sibling interaction  (1975) own  ceptualizing  have,  on  clinical sibling  the  basis  experience,  influence.  more of  s p e c i f i c a l l y , Bank a  literature  suggested  They  interaction development  have  ways  review of  identified  conthe  following  another:  2.  Mutual r e g u l a t i o n - t h i s a l l o w s t h e o p p o r t u n i t y o f t r y i n g new b e h a v i o r s and r o l e s w i t h t h e r e g u l a t o r y p r o c e s s t a k i n g p l a c e i n t h e r e l a t i o n s h i p between equals.  3.  D i r e c t s e r v i c e s - t h e s e may o c c u r i n s i d e o r o u t s i d e o f t h e f a m i l y and i n c l u d e s u c h t h i n g s a s lending money, teaching skills, manipulating f r i e n d s h i p s f o r each o t h e r , a c t i n g as b u f f e r s f o r e a c h o t h e r and so o n .  4.  D e a l i n g w i t h p a r e n t s - i n c l u d i n g s u c h t h i n g s as b a l a n c i n g t h e power o f p a r e n t s , j o i n i n g t o g e t h e r to negotiate, maintaining or betraying confidences a b o u t e a c h o t h e r ' s b e h a v i o r , m e d i a t i n g between one a n o t h e r and between t h e m s e l v e s and t h e i r p a r e n t s , m e d i a t i n g between t h e o u t s i d e w o r l d and t h e i r p a r e n t s , m e d i a t i n g between t h e i r p a r e n t s , and f i n a l l y pioneering which occurs when one s i b l i n g does something new, thereby giving other siblings p e r m i s s i o n t o do t h e same t h i n g ( p p . 319 - 3 2 4 ) . would  other  parent.  family  of  a  that  relationships  members  are both  relationships  sibling  to a  family  physically  some t y p e member.  of t h e i r  The  family  occurring.  goals  achieving  for  occur  because or  a  are related  one  member  may  of the s i b l i n g  t o be  serve  siblings and  sibling  o r may  as  to a  anothn o t be  functional  These- r e l a t i o n s h i p s  another  func-  to maintaining  for a  one o r more  have  of physical  of behavioral i n t e r a c t i o n with  i n the presence  relationship  which  structural  sibling,  Functional relationships  or promoting  siblings  appear  Structural  proximity  one  f o r one  I d e n t i f i c a t i o n and d i f f e r e n t i a t i o n - these proc e s s e s p r o v i d e f o r v i c a r i o u s l e a r n i n g and l i v i n g with a child determining through another's beh a v i o r ways i n w h i c h ( s ) h e w o u l d o r w o u l d n o t l i k e t o be l i k e a s i b l i n g .  tional.  er  serve  1.  It with  functions that siblings  have a s  of the functions  identified  above.  -  Following and  Ihinger,  bitual  of  behaving  will  be  t h e assumptions  interactions  at the individual  some  individual  on  t h e above  both  however,  through  18 -  environmental and r e l a t i n g  siblings will  affected.  communication clique  alignments  altered  will  depend  o r may  and  on t h e world  ha-  level.  I f ,  the habitual  ways  and t h e s i b l i n g of this  affective  a l l be  large  n o t be e f f e c t i v e .  ramifications power,  can  occurs,  be a f f e c t e d ,  The  network,  a r e by  Schvaneveldt  and a t t h e group  change  may  of  group  are that  the  r e l a t i o n s h i p s , and  altered. view  The  How  they  will  be  of the individual.  METHODOLOGY Diers the  study  ling's the  (1979) being  ifying  reported,  event  or by  collected  treated of  conceptualizing  -  s i m i l a r t o t h e one which conceptualizing  a  f o r cancer  has  situation deriving (Glaser  as  -  another  c a n be  class-  conceptualization describing  abstractions  or  concepts 1967;  being states  as d i s c o v e r y  to  Strauss  Factor  further  opposed  and  approached  study.  Diers  sib-  child i n  In the study  and S t r a u s s  i t s goal  the  f o r categorizing,  situations.  by G l a s e r as  when  factor-searching  i s conceptualizing.  introduced  theory  poses  are appropriate  the task  method  grounded  done  i s being  studies  or  problems  o f day t o day l i v i n g  the perspective  searching  the  reported  perception  family  from  suggests  i t . from  Glaser  of  o f an This  the  i s data  1978).  - 19 -  T h i s method was (1967) the  i n the  focus  then  the  others  as  of  a  to  more s p e c i f i c  is  process  life  through as  and  on.  so  processes  of  time  the  which  he  The being  or  and  codification  THE  to  understand I t was  she  were on  used  made  the to  method  sothis into  giving  follow.  the  movement  concerned  status,  group, two  with  basic  include  examples o f t h e  of  such  organization types  s o c i a l - p s y c h o l o g i c a l and  and  by the  of  incorporated  with  being  former  of  a  method i n d i c a t e t h a t i t  identified  the  Since  conservative  use  of  social-  socialization,  latter  are  bureau-  formalization.  for  indicates cancer  are  that  siblings  affected  I t i s l e s s c l e a r whether the  negative,  a  with  LITERATURE REVIEW  literature  treated  perience.  of  this  sex,  termed  becoming, n o r m a l i z i n g cratization,  opposed  (1978)  Examples  the  in  concerned  class,  Glaser  terms.  for researchers of  dying  hospitals.  better  elaborated  use  Strauss  gain understanding  stepfathers  being  as  social  structural.  SUMMARY OF  how  oriented  factors  described  procedures  reports  to  in  to  institution  (1978)  Glaser  method  and  o f d e a t h and  i n conceptual  (1980)  Glaser  dying  attempted  understand  family.  The  she  study of  the  radical  Stern  method  their  used  or experience  existence ciety.  of  d e t a i l e d by  experience  have  (1977)  Wilson  a  report  on  situation  first  transient  or  permanent.  by  the  effects The  of  children  illness  ex-  are p o s i t i v e  sibling's  per-  -  ception of the experience pilot  study  identified The appears study the  The is  i s not addressed  indicated  change  other than  i n one  was t h e d o m i n a n t  factor  by t h e s i b l i n g s .  constant  comparative  method  of Glaser  t o be a p p r o p r i a t e t o a c c o m p l i s h  which  of  i s being  questions  day  t o day  treated  living  f o r cancer,  and S t r a u s s  the purpose o f t h i s  i s to conceptualize the s i b l i n g ' s  experience  family the  which  20 -  when by  a  perception of child  seeking  i n the  answers t o  posed:  1.  What c o n c e p t s w h i c h r e l a t e t o t h e s i b l i n g s p e r c e p t i o n , c a n be d e r i v e d from t h e s i b l i n g s d e s c r i p t i o n o f t h e e x p e r i e n c e o f day t o day l i v i n g when a c h i l d i n the family i s being t r e a t e d f o r cancer?  2.  What i s t h e r e l a t i o n s h i p between t h e s e  p r e c i s e m e t h o d o l o g y employed d e s c r i b e d i n Chapter  III.  i n the conduct  concepts? o f the study  -  21 -  CHAPTER I I I :  METHODOLOGY  INTRODUCTION The ling's the  family  i s being  was  to conceputalize when a n o t h e r  f o r cancer.  obtained  This  As d e s c r i b e d i n  of the literature indicated  chapter  including  families,  the q u a l i -  how  the research  the selection of participants,  making  considerations,  details  contact  the data  with  tool,  o f such  data  were  contacting  the s i b l i n g s ,  collection  sib-  child i n  p a r a d i g m w o u l d be a p p r o p r i a t e f o r t h e c o n d u c t  study.  data,  study  treated  I I , a review  tative  the  of this  p e r c e p t i o n o f day t o day l i v i n g  Chapter  a  purpose  ethical  collecting  the  and t h e a n a l y s i s o f t h e d a t a .  OBTAINING THE SAMPLE The which with  researcher  found  the population cancer The  Nursing where  process Research  with  possibility  was composed  f o r a study i n  of siblings  of  children  t o be complex. i n this  study  Committee  the oncology  discuss  o b t a i n i n g a sample  was  the physician  located  i n charge  t h e study  done by s u b m i t t i n g  t o t h e committee  copy  proposal.  o f the study  first  of the large  clinic  o f conducting  was  t o contact the general  hospital  f o r permission of  the c l i n i c  i n question.  to the  T h i s was  a w r i t t e n r e q u e s t and a  When t h i s  permission  had been  - 22 -  obtained  the  researcher  charge  of the oncology  tail.  The  plinary take  place.  team  The  the  met  clinic  p h y s i c i a n met  oncology  cedure  then  members  and o b t a i n e d  researcher  of  would  the p h y s i c i a n i n  to discuss  with  members  with  the study  of  the  consent  t h e team follow  multidisci-  f o r the study t o  determined  to  i n de-  gain  the pro-  access  to  a  suitable population. I t was d e c i d e d t h a t •the  social  criteria then  obtained  child's  medical  The  researcher  for  any  i s the  anxiety coping  searcher  study  contact  worker,  the  about  would  of the  family.  the study  the  The  ill  first  c o u l d be t h e  or the researcher.  should  there  be  as  result  such  a  any p s y c h o l o g i c a l  of  the study.  a potentially of  1968;  potential  this  Spinetta problem  may  arouse  which  1978).  and  Talking  e m o t i o n a l l y charged  study with  sequelae  of  difficulty  The p a r e n t s to  topic  feelings  t h e y have  asked  with  were  contact  told  the r e -  i f t h e y h a d any c o n c e r n s . oncology  being  relationship parents.  to  met  Permission  the p h y s i c i a n i n charge  within the s i b l i n g s  this  The  the researcher.  which  t o a c t as a r e s o u r c e p e r s o n t o  subject  (Rich  families  worker agreed  sibling about  select  the family  the s o c i a l  the  of  care  social  children  by  from  to contact  physician,  as  would  established  be  person  worker,  the researcher, i n conjunction with  team  conducted. with  This  the  i n turn  h a d some They  r e s e r v a t i o n s about  have  children appears  a  with  very  close,  cancer  t o be  such  long-term  and w i t h  translated  a  into  the an  -  expression Other the  of  r e s e a r c h e r s had families  luctant  to  in  terms  of  oncology  the  subsystem  and  the  team a  and  possesses  the  family  the  (Bertalanffy  physician  as  a  of  the  system,  boundary  and  the  CRITERIA  FOR  SAMPLE  The  sample  judgement informants  sample were  the the  were  to re-  system  is  was  AND  by  clearly  selected  1970,  to  could p.  conform  such, system  case  the  access  to the  boundary.  RATIONALES be  268). to  a  the  defining  that  UNDERLYING  As  this  is controlling  selected  (Honigman  of  in  of  formed.  In  for penetrating  SELECTION  relationship  consisting  1968).  family,  procedure  which  family.  access  team  characteristics  boundary  of  whole  gaining  family  subsystem  a  members  in  oncology  -  including  member  the  clientele.  theory,  members  toward  interested  oncology  systems team  been  their  -  behavior  question  expose  Viewing  the  protective  23  defined That  certain  as  i s ,  a  the  criteria.  Specifically:  1.  T h e r e w e r e two o r o f whom h a d b e e n related disease.  2.  One o r more participate.  3.  The child with currently being hospitalization  4.  The the  more c h i l d r e n i n t h e f a m i l y , one d i a g n o s e d as h a v i n g an o n c o l o g y  siblings  of  the  i l l  child  the oncology r e l a t e d t r e a t e d b u t was past  s i b l i n g s of the c h i l d with a g e s o f 8 a n d 18 y e a r s .  cancer  agreed  to  disease was the initial  were  between  -  5.  The s i b l i n g s  were  living  a t home.  6.  The s i b l i n g s  were  fluent  i n English.  7.  The f a m i l i e s l i v e d oncology clinic.  The  rationales  following. other to  than  There  I , each  although  some  not  with  the  i l lchild  period  crisis  p.  following  207) a  cancer  event an  time  1978).  of  i n  t o be a n y r e a s o n  for limiting  to  be  participate  shared.  siblings  reaction  recorded  to  the  1978). one  of a  must  the ongoing  life  of  member that  life  of of  hospitali s a  (Coddington be  allowed  business  episode  the  child  Systems l i t e r a t u r e  f o r the child  and  of  1978, p . 6 7 ) .  treatment  concluded  study  living  sibling  period  family  i n t h e ongoing  the  the i n i t i a l  and Messick  ongoing  i n Chap-  the presence  child  the  con-  i s unique  Because  of a  studying  indicated  I t c a n be  the requirement  as,  to hospitalization  i n the l i f e  affecting  be s i g n i f i c a n t  i n the family relationship  Hospitalization  (Aguilera  the  fora sibling  included that  before  of the  included  one c h i l d  adjustment  (Bluebond-Langner  (Horton  may  over.  crisis  that ' factors  fore,  was  literature  significant  criteria  of perception  the i n i t i a l  and  t o day l i v i n g The  may  or  be  drive  t h e p e r c e p t i o n o f day t o day  the criterion  1972,  cancer  one h o u r  perception of a situation  components with  the  agreeing  the adjustment  recognized  day  siblings  a  at least  with  individual's  concerned  ization  be  the definition  was  cancer  must  d i d n o t seem  of  with  within  underlying  the child  numbers  sistent ter  There  exist.  the  24 -  others episodes  of the sibling to currently  with  supports  affect  treatment  i s a  be  thereunder-  -  going  t r e a t m e n t was The  method the  searcher  verbally.  fluent age  included.  of  supposed  data  child  be  minimum  This  verbally,  be  i n meeting  by  Piaget  with  (Piaget 6  child  a r e expanded  operations the  cognitive  t o know  having  interview.  being  involved with  of  man,  son  that  1963),  adult  i s ready  f a m i l y boundary. an  oncology  same  family  criterion  as  that  have  some the  age  with  beginning  The c h i l d  them.  of the  now h a s  This  about  ability  to participate i n a  age l i m i t  with  the rea-  would q u i t e  home.  This  importance another  was t h e f o c u s , was  f o r regular association.  defined  likely  i s t h e age  and young a d u l t h o o d  prime  the i l l c h i l d  coincides  not a c t u a l l y see  (Erik-  and t h e young outside  As t h e day t o day l i v i n g w i t h disease  could  him o r h e r t o t h i n k  age t h e c h i l d  f o r intimacy  latitude  abilities  need  t o be a b l e  adolescence  peers  related  being  as  operations  them.  leaving the parental  of late  when  about  s e t as t h e upper  that past  be  of  This period  to experience  straightforward  soning  some  cognitive  enabling  f o r the c h i l d  was  the r e -  selected  This  1969).  the c h i l d  must be p r e s e n t  Eighteen  that  of concrete  when  so t h a t  structures  without  pre-  and s u g g e s t e d  the c r i t e r i o n .  i s the stage  performed  activities  recognizing  and I n h e l d e r  age  with  the r e s t r i c t i o n  arbitrarily  the stage  about  communicate  imposed  was  interview,  c h i l d r e n a r e more l i k e l y t o be a b l e t o  communicate  approximately  to  the  of the researcher  Eight  age a t w h i c h  allowed  collection,  able  i n t h e language  parameters.  25 -  a child  living  considered  of the with  with the  an e s s e n t i a l  - 26 -  MAKING CONTACT WITH THE Parents a  study  act  gatekeepers  population  Taylor  1975,  p.  act  limit  the  to  as  SIBLINGS  of  31).  Kantor  penetration  They do  t h i s by  into  out  the  members.  The  behavior  in  searcher's  The  researcher gaining  in this first  appointment parent  if  the  phone  to  the  meet w i t h tual  and  an  she  family  On  they  interview  of other  of  and  parents family  to  this  siblings.  the  family  kind The  of re-  family  boundary  is  approached  initially  by  to to  during  could then  contact.  a  was  done to  the  requesting  f o r the  back,  the  to  first be  parent  i n the  the  to c a l l  parent  back  to the  The  timing  had.  weeks  to  children  study  in several  family  The  the  even-  i n d i c a t e d three  interview.  decided  commitments t h a t t h e  with  researcher  participate a  study.  at  the  tele-  permission  siblings  proposal  a  mother  the  the  The  for  by  f u r t h e r d i s c u s s i o n aiming i n the  clinic  them.  gave p e r m i s s i o n  This  study,  regular  contact  home e x p l a i n i n g  the  time  was  was  parent  discuss  call  agreed  the  access of  to  information  for  of  would  d r e n were w i l l i n g  first  of  appropriate  suggested.  that  the  family  participation  indicated  a  physician  purpose the  movement o f  evidence  researcher  The make  and  (1976) f o u n d  limiting  to  selected  asked  to  nature  (Bogdan  boundaries of the  by  found  them  access  section.  researcher call  and  penetration  who  agreed.  Lehr  of the  access  family  physician  and  restricting  system  initial  described  the  of  f a m i l y and  c h i l d r e n i s through  system. and  i n the  was  chilextent of  the  because  -  The  second  researcher met  the  scribed then  who  after  mother  in  the  spoke  initial agreed  the  contact  by  Following selected,  A  person and  and  uniqueness"  This  initial  and  The  followed  de-  mother the  children  had  took p l a c e w i t h i n  two  five  had  i s based are  data  the  agreed  social  The  the  subjects  the  first to  two  fami-  participate.  size  can  be  required  design  required  that " a l l  retaining  (Bogdan  for  additional  yielded  tional  a  core  subjects  were  added.  1978).  I f the  variable additional interviews  s u b j e c t s w o u l d have b e e n  and  flexDue  c o n s t r a i n t s i n terms of time a v a i l a b l e f o r c o n d u c t i n g no  in  i s dependent  allows  (Glaser  their  studied  single subject  study  as  premise  while  processes  sample  and  on  similar  o r t h r o u g h any  emerging  with  population.  general  adding  contact  children  study  on  study,  the  up  told  interview  by  physician  clinic  study.  was  12).  not  the  and  p.  in  of  telephone  1975,  ibility  oncology  researcher  Taylor  to  purpose  subjects  single setting  the  the  The  study  and  at  first  from the  children.  eight  qualitative  settings  approached  contact.  the  T h i s became t h e  any  s e l e c t e d was  to p a r t i c i p a t e . first  -  obtaining permission  nature to  days of the  lies  family  27  the  data or  had  addi-  necessary.  ETHICAL CONSIDERATIONS Ethics actions  i s concerned  (Schachtel  with  1978).  the  The  Tightness ethical  o r wrongness  considerations  of in  -  this  study  informed  center  the  gatekeeper  A.  of  of t h i s  Originally to  contents  of  ulation  proceeded,  doing  a  a  that  what  With t h i s on  an  of  The  form  the  parents  siblings done  so.  that  t o know  that  whether  The  incorporated  into  givers  used shared  was  and  t h e popi s com-  i s being  (MacElveen  done, 1978).  inquired  the p o t e n t i a l  gathering  technique.  as t o whether  not t o d i s c l o s e  to  the q u a l i f i c a t i o n s  of the study,  the diagnosis  important  f o r the pur-  the s u b j e c t can determine,  of the data  also  be  specified  t h e purpose  and g u a r a n t e e d This  appropriate.  o r n o t he o r she w i s h e s  form  the nature was  letter  o f sample  the researcher  of the subject w i l l  basis,  had  t o use a  to a population  the consent  The c o n s e n t  and  o f the study.  t h e r e s e a r c h , why t h e s t u d y  the researcher,  subjects,  subsequently  i n f o r m a t i o n as a guide,  participate.  respon-  (Appendix " A " ) .  study,  the role  informed  the family  As t h e p r o c e s s  d i d n o t seem  were  form  right  petent t o conduct and  from  t o a c t as  and t h e r e s e a r c h e r s  to parents.  s a n c t i o n i n g access  have  and l e a v i n g  t h e r e s e a r c h e r had i n t e n d e d  the p a r e n t a l consent  poses  entering  consent  right  g i v e r s on c o m p l e t i o n  of the l e t t e r  When  o b t a i n i n g informed  children to  Consent  i n t r o d u c e the study  selection  permitting their  study),  t o the consent  the issues of obtaining  and t h e p a r e n t s '  information  The P a r e n t a l  around  parents  themselves,  ( p . 36  sibility  from  i n the study,  children  system  primarily  consent  participate  28 -  of cancer i t i f they  or not  with  the  had n o t  to protect the parent's  right  - 29 -  to  be  the information giver.  audio  tape  anonymity a  code  being  number  directly was  record  the conversations with  preserved  by  and r e s t r i c t i n g  to  destroy  the  tapes  could  have  were  given  to the children.  a l l siblings  study without cancer, this B.  at  One  Consent  forms.  consent  subject  intention study.  asked i f The  tapes  assured  withdraw  that  from  the  undergoing  treatment f o r  from  family  each  child  the  were o f l e g a l  (MacElveen 1978),  kind  of  a  1978) form  was  designed  signed  to the c h i l d  questions  and  cation  that  permission  The they  children  to each  understood  their part i n i t .  "B").  to refuse  terminate signed  a  informed  explaining  requesting permission  permission  consent  t o n o t be  the researcher  r e c o r d t h e c o n v e r s a t i o n (Appendix  indicated  right  and t h e r i g h t o f  information  i n o b t a i n i n g and  time.  age t o s i g n  r e c o g n i z i n g the c h i l d ' s  ( v a n Eys  terested  any  could  were  those  of the S i b l i n g s  However,  research  tape  parent  with  form.  None o f t h e c h i l d r e n  the  The p a r e n t s  to the c h i l d  time.  to  families  and t h e r e s e a r c h e r a g r e e d .  jeopardy  any  t o the tapes  i n both  i n the family  to  the recording with  The r e s e a r c h e r ' s  t h e s u b j e c t s and p a r e n t s them  requested  at the c o n c l u s i o n of the  they  or  access  was  the c h i l d r e n  identifying  i n v o l v e d i n the study.  However,  any  Permission  to  was i n -  to audio  -  The form  also  t o answer  any  the conversation at  this  the procedure  form,  as an  indi-  t o be f o l l o w e d and  - 30 -  C.  The P a r e n t Granting  cannot  scious  flow.  of the parents  to children  i n the request  This  i n the family  of the r i g h t t o  researcher  was  not giving  up  that  t o be g i v e n  the tapes  very  right.  con-  I t was  a t t h e end o f  study. A  parent  first  o f one  s e t of s i b l i n g s  i n t e r v i e w encouraging  sought  assurance  standing was  made  necessary  D.  were,  t o t h e comments  had  a  In  the parents clear  under-  The r e s e a r c h e r  felt  t h a t t h e comments  i n the researcher's by o t h e r  the  experience,  children  as i n f a c t  were. The R e s e a r c h e r ' s  seldom  conducting results  1978).  Responsibility of research  Researchers  should  this.  ganization  o f knowledge,  report  of this  study  team w h i c h g r a n t e d findings  will  researcher groups.  The  be  will  access sent  will  the  Givers  t o human  o f new  help  research  t o Consent  related  i n the discovery  understand  both  interview.  the interviews  the parents  made  for  t o p a r t i c i p a t e and  family relationships. to reassure  present  t h e second  the researcher  by t h e c h i l d r e n  The  The  during  and a f t e r  that  of usual  similar they  before  was  the c h i l d r e n  and o u t o f t h e s e t t i n g  conversations  it  access  a s p a r e n t a l abandonment  information  evident  in  a researcher  be c o n s t r u e d  control  the  as Gatekeeper  information consent  can c o n t r i b u t e  and i n t h i s  spirit,  to the families.  to  to the o r of the  the oncology  A summary o f t h e  of the p a r t i c i p a n t  be a v a i l a b l e  (Holt  givers  a copy  be made a v a i l a b l e - t o  t o each  behavior  families.  t o d i s c u s s t h e study  with  -  THE  INTERVIEW  RESEARCH  WITH  The An  cal  in  has  human  The  this  is  the  as  the  the  observing  interview  develop to  time  limited may  data  child's child's the  is  not  frame  by  the  of  have  great is  a  the  reference  therefore  child  and  necessary  the  not  his  valid  in  reminds from  an  involved.  He  intuition,  that  and  observed  (1964)  will  and  the to  important  must  enable  him  of  feel  enough  point  of  truth.  them  obtaining  only  as  the  view.  time  enough  to  range  to  That  However,  may  not to  child  child  interviewer's  child's  the  knowledge  i n t e r p r e t a t i o n of  take  to  secure  However,  the  give  structured  not  wide  his/her  represent  research  subjective  is  danger  very and  interviewer's  the  i t is  responses.  from  the  obtained  process  to  75).  children,  in  truthfully answers  (p.  as  data  talking  is  Cicourel  respondent  a  of  and  data.  phenomenologi-  nature  through  the  is  collect  The  knowledge  social  with  to  1).  observer  questions  may  p.  1978).  procedure  accurate  same,  related It  or  more  respond  basic  answer  "human b e i n g  a  interpreting  There i f  as  social  the  answers."  talk.  simply  QUALITATIVE  subject-as-object  interviewer,  frank  elaborate be  a  the  (Davis  interviewing  to  of  those  community  elicit In  and  "the a  IN  study  1968,  human  fusion  that  suggests  TOOL  this  i t considers  recognizes  interviewers  (Rich  recognizes of  in  described  being"  view  of  COLLECTION  used  been  paradigm  act  DATA  -  CHILDREN  perspective  act.  A  interview  interview  another  AS  31  i s ,  since may  the be  does  the  not  be  truth  as  the  explore  the  a  same. topic  - 32 -  from  several  times the  t o ensure  child  The  THE  and  specified.  treated  Kahn  can  understands  (Rich  be  1968)  living  for  even  at  what  different i t i s that  1968).  DATA  In t h i s  t o day  and p o s s i b l y  t o share  interview  (Cannell  answers  of view  the interviewer  i s trying  COLLECTING  day  points  and what  study, when  cancer.  compared  to  a  i s being  measuring measured  i t i s the sibling's  another This  child  i s  tool  must  be  perception of  i n the family i s being  being  measured  by  seeking  to the questions:  What c o n c e p t s which r e l a t e t o the s i b l i n g ' s perception c a n be d e r i v e d from the sibling's desc r i p t i o n s o f t h e e x p e r i e n c e o f day t o day l i v i n g when a c h i l d i n the family i s being treated f o r cancer? What  An in  interview  the process  (Appendix rived  from  the  cancer itive  seeking The  and  how  cancer  feelings  illness  with  the  variables.  with  the  of  to  the  were  these  be  and  the sibling's  the c h i l d  sibling's  aspects  of having  family,  and  on  map  were  de-  chronic  activities,  to the subject i n being  treated for  activities, a  a  questions  covered  family  reference  concepts?  t o a c t as  to the research  areas on  the presence  negative i n  general  between  constructed  answers  Included  interfered and  was  literature  illness.  relationships question,  schedule  of  "C").  childhood  for  are the relationships  child  information  being about  the  pos-  treated specific  - 33 -  A  group  s c r i b e d by  interview  Bogdan and  the  first  the  interview  schedule not  a guide,  When t h e  in  the  family  up  questioning.  children  younger  as  a  in  the  as  the  The  the  i t was  the  interview  on  was  utilized  for  technique from the  a  used  children did  to c l a r i f y  both  the  the  child  the  child  follow-  interview  more  this  interview,  the  for  being  willing  researcher  agreed.  possible  follow  to  Had  this  With through  not  been  individually  The  oldest  the  when  inter-  c h i l d r e n a p p e a r e d t o be and  as  child's  oldest  families,  second  in  interview  response of the  preference  held  the  d e c i s i o n to  in  setting,  requested.  with  child  to  more  talk  the  in  oldest  on  a  the  theme  case,  each  i n each  a  child family  individually.  meaning  interview  of  and the  itself  that  the  younger  be  open-ended  the  questions  to  de-  most q u i c k l y t o t h e  for  children.  research  ify  concepts  As  the  interviewed  of  plan  group  younger  The  respond  led to  a  sessions  together,  However,  group.  have b e e n  series  130)  rap  of a conversation  indicated  interview,  would  to  separately.  absent,  third  p.  subject  g r o u p was  This  situation,  with  was  tended  children  relaxed  child  a  Then, u s i n g  family  suggested  that  the  to pursue that t o p i c , t r y i n g  view.  viewed  to  family.  introduce  course  one.  (1975,  i n each  to  i f i n the  introduce  was  Taylor  interviews was  comparable  were  these.  was  probing experience  the  questions f o r the  researcher  occurring This  conducted  kind  primarily seeking  as  to  clar-  sibling.  attempted  in  the  data  of  questioning  to  and  a  During identify  to  center  occurred  more  -  frequently sequent of  theory  the  as  after  process  determine  population  the  had  study  begun  particular. of  and  and  in  sub-  the  focus  is in  keep-  theory  begins  the  and  This  grounded  collection  constructs  whereby  the  to  be  sampled It  at  start  data  additional  of  data  The  is  consists  where  as  conceptual  of  to  of  the  be  the  i t emerframework  analysis  sampled  theoretical  assigning using  and  activity  codes  these  continually  properties this  and  termed  collection,  the  outcome  nature  matter  collection,  regarding  codes.  the  subject  (1978).  i s  analysis  more  data  Glaser  mation  data  of  1978).  The  the  interview  became  researcher  (Glaser  -  i n d u c t i v e approach  emerges  the  data  second  interviews  with  ges  the  interviews  the  ing  in  34  or  the  even  the  sampling to  codes  looking  of  raw  relationships as  data  to  for  guide infor-  of  d e s c r i b e d by  by  the  Glaser  that:  t h e a n a l y s t p r o g r e s s i v e l y s e e s more i n h i s d a t a o f relevance and f i t as he e x p l a i n s how the basic social process r e s o l v e s the b a s i c s o c i a l p s y c h o l o g i c a l problems of the p a r t i c i p a n t s i n the substant i v e a r e a under study (p. 36).  As  the  categories being  become  added.  direction comes  comparison,  from  for the  At  coding  saturated. this  data data.  point  and  That data  collection  re-coding i s , no  new  collection  and  the  continues,  the  information i s can  extent  cease. of  i t ,  The thus  -  THE  CIRCUMSTANCES Because  by  the  of that  A.  with  first  father,  male  related  access  family  age  disease  about  one  child  goes  other  children,  half  to school being  drive  activities  not  the  interviewed,  14  her  male  They  i n higher This  had  children  with  would  she agreed  only  one  be  t h e younger stranger.  consented. interview.  with  two  On She The  oncology community  clinic.  Thei l l  that  some  and t h e  first  might  i n  she being  She i n d i c a t e d t h e o l d e r one, have  she  difficulty  indicated the  d i d say she hoped reluctance  their  parent,  interested  back  of  about  community.  especially  call  the  years,  small  t o a s k them.  siblings  12  i n a community  the  be  mother,  community  i n the neighboring spoke  a  age  with  in a  means  thought  children  live  grades,  but  a  important  the actual  of  child  t h e immediate  children a l l verbalized well,  with  are  be combined  the oncology  her  talking  about  will  and t h e c h i l d  away.  however,  i t i s  i s composed  years,  from  researcher  sure  the data  Family  within  occur  constructed  family.  10 y e a r s ,  drive  1964),  This  contacted  age  and  to information  age 8 y e a r s .  hour's  hour  When was  (Cicourel  First  child  child  social  have  encounter  interviewee,  d e s c r i p t i o n o f each  The  a  the  of the interviews.  Interviews  female  and  i s a social  encounter  the reader  brief  INTERVIEWS  the interview  circumstances a  THE  interviewer  products that  OF  35 -  which  there  would  appears  to  - 36 -  underlie the  parental  family  serves  children's boundary  of  somewhat  many  i l l  outside  child what  was The on  an  cancer  had  a  arranged, the  in  mother  then  was  the  not  a  We  minutes children iences  with  the  of  this  of  they Six the  on  into  with  findings view,  sat  agreed  parent.  The  (1982). be  The  that  he  an  child  and  family  would  the to  setting One and  the  children  the  began  oldest  were  eager This  At  the  second  by  is  in  dinner  The  the  to  be  children  closed About in.  their  of  child  10 The  exper-  with the  the  the  inter-  again.  i n t e r v i e w time  researcher  chose  keeping  conclusion  of  arrived  oldest  joined  share  early  ate.  chat.  child to  an  ar-  interviewer  siblings to  aware  was  to  family The  the  diagnosis  The  selected  of  have  s i t down  away.  younger  be  interviewer  the  child  wanted  not  the  then  engaged  appointment  with  while  time  were  would  cancelled.  interviewed  the  usual  mother  been  floor  family  later  this  about  bedrooms.  to  function  children  children  just  researcher.  Green  the  When  two  interview  the  months  the  youngest  the  the  interview  family  setting  The  their  door.  way  the  had  separate  was  of  a  that  practice  together.  the  the  as  practice.  home.  outside  Eventually,  that  interviewed one  such  was  the  to  Also,  f a m i l y was  took  yet  problem  on.  evening  soccer  waited  a  with  access  organizing  in  soccer  keeping  1976).  activities.  plan  supper  and  Lehr  of  going  in  experiences  of  occupied  ranged.  as  and  is  controlling  to  logistics  presented in  of  access  (Kantor  The  agreement  requested  was  separate  arranged inter-  - 3 7 -  views  with  oldest  child  could  be  at  social  was  conversation  at  area As  was  ing  the  was the  another no  hesitancy  meeting as  time.  when  looking after  day.  He  in  was two  of  eating  another with  cancer  B.  9  the  unable  at  p a r t of the subsequently  to  wandered  the  14  second  years,  years,  with  male„  a  little  this  was  time  was  an  for open  the  researcher  him.  This  mother i n took  arrived  house and  time  arrang-  place  the  at  child  animals  a was  for  the  h i s younger b r o t h e r s  and  the  child  kitchen.  the was  One  interview. at  a  sibling  was  in  and  out  throughout  the  interview  i n the  interchange  and  occasion-  f a m i l y was  The  table  conversation.  Second  foster  cancer  the  in  male c h i l d  with  the  hear  participating  Interviews  in  interview,  t h e house d u r i n g  s e l e c t e d by to  the  i f they  to  from  return while  neighbor's  next  apart  the  bedrooms.  making demands on h i s o l d e r  The age  setting  child  children)  researcher  whom were  area  room  occasionally ally  the the  The  s e t t o meet w i t h  It  asked  setting  the  a l s o b a b y - s i t t i n g with  interview an  on  two  agreed  of  The  by  d i d not  t i m e was  there  The  chosen  oldest child  neighbor's,  sister,  friend.  researcher,  was  but  beginning  l o c a t e d between t h e  there,  there  (again  This  interview,  a  the  other  cooperation.  the  with  of  the  together.  this  playing  arrival  a t home and  of maintaining  interview  play  not  On  home d u r i n g  occupied the  child.  interviewed  interests was  each  child  brother.  Family composed  age child  of  12 y e a r s , (brother  mother,  female  male f o s t e r of  the  child  child  other  age  foster  -  child)  age  7 years  and male  illness  age 7 y e a r s .  minutes  drive  children  attended  home,  related nearby  junior  around  the  The er.  purpose  er,  a  and  The  related about  two  the street  year  upon  arrived,  15  foster  from t h e a  church  o l d attended  area  with  seemed time  the  experience  that  kitchen.  this  parent,  a  wary  of sharing  to assimilate  may b e m o r e  in  living  room.  to  with  nurse.  with  a  t o be  and f o r con-  the research-  i n f o r m a t i o n about t h e of participants.  of clarification  Children,  see an a role  This  a t home w i t h The  On  seemed  t o congregate  children.  b u t as a person  setting  outsiders.  kind  tend  the  were a l l  interview  a d j o i n i n g 'the found  of  was s e t up w i t h i n two  such  a teacher i n this  of their  as a  f o r example,  by  influence  not simply  attached  means,  children  because  adult,  The  i s included  as he d e s c r i b e s e x p e c t a t i o n s and t h e i r with  t o having  confirmation  the  o f t h e i n t e r v i e w and t h e r o l e s f o r this  immediately  the children  organized  f o rthe family  required  child a  14  area  o l d attended  agreed  the researcher  children  communication  person  year  the  family  mother  t o occur  (1968)  limited  across  an appointment  i n an  place  requirement  on  the  visit  They  Rich  of this  the table  versations  clinic.  a n d t h e 12 and  an oncology  i n an urban  directly  the researcher  and  common  with  oncology  school  willingness,  subsequent  lived  participate,  When  gathered  child  highschool.  children  days.  the  nearby,  parent  children's  They  child  school  The the  from  the i l l  38 -  as  a  teach-  that the  i n a classroom f a m i l y had  than  viewed  -  and  participated  worker  who  brings  to  to  him  of  and  setting  interviewee,  cannot  but  interviewer  would  child  instance  with  be  aware  human  to  sense  setting  between  of being  the  of  the children  decide  share  with  For part cancer  was l a s t i n g play.  interaction  ex-  is a beings  interviewed.  experience  t h e way  f o r the  i n which  the  i s constructing the experience.  this  share.  individual  experiences  the interview  construct  must  interviewer,  they  ongoing  a way a s i t makes  constructs the experience  interviewer  the  social  of previous  current  i n such  a  and  The  total  from  Because  involving  with  1964), t h e i n t e r v i e w e r p l a y s a p a r t i n t h e way t h e  interviewee  In  data  1966).  children.  t h e sum  e a c h new s i t u a t i o n  (Cicourel  The  extracts  before  i n the placement  foster  experience  (Schutz  social  involved  t h e two  each  periences construct  i n interview settings  had been  supervision  39 -  of was  what  r e q u i r e d time  her role  h e r and what the interview present.  was,  they with  When  The o t h e r  siblings  interview.  The m o t h e r  interview,  encouraging  would  the  also  to  found  the process  sibling  went o u t t o  present  children  choose  family, the  chose t o s t a y u n t i l  was  and d e c i d e i f  this  he  t o o l o n g he and t h e y o u n g e s t  t o assess  to  t h e end o f t h e  f o r a part  of the  participate.  On  reviewing  t h e i n t e r v i e w c o n t e n t w i t h t h e mother p r e s e n t , and  comparing  i t t o the content  not  present,  children peared  her presence  sharing  their  o f i n t e r v i e w s done when s h e was d i d n o t appear  experiences.  to inhibit  The o l d e s t  t o be t h e l e a d e r i n t h e i n f o r m a t i o n g i v i n g .  child  the ap-  She a l s o  -  appeared  to  be  actively  Therefore,  in  The  children  other  wanted boy  to  the  in  parents  and  ficance  in  made b y  the  C.  Why  A  so  to  seen  together This  grieving. separately.  and  again  time  the  12  and  was  they  year  much  old more  perception.  setting,  the  field  notes  experience,  These  placing  with  was  giving  interview,  on.  cope  she  be  i l lc h i l d .  his  each  to  interview  information  sharing  interviewing  -  trying  wanted  the  the  Following the  second  include  initiated  involved  40  notes  made  conversations  were  interview  were  of  about  with  contextual  the  signi-  and  some  comments  being  The  Same  Population  subjects.  Second  Interview  With  Was  Conducted Following  the  and  coding  the  methodology  purpose depth and  of  some to  of  were  the  cess option  a  as  few  second chosen.  49-51  a  since and  f a m i l i e s as  interview  was  of to  with  in  the  also  the  this  the  in  first  of  for  researcher to  same  the  greater  to  data this  subject  population  The  interview,  pertinent  allows  with  report).  explore  process  possible  analysis  consistent  i n the  different this  family  is  information  methodology with  each  This  introduced  additional interviews, expose  (pp.  emerging  However,  in  begun.  interview  topics  occur  1978).  was  additional  Qualitative  (Glaser  interview  used  second the  to  data  being  the  which  interview  to  the  collect  concepts sis.  of  first  the  analykind  of  population  had felt  agreed  obligated  research  population  to  was  prothe  - 41 -  ANALYSIS OF THE DATA Analysis this  begins  contact. view,  the data  Maxwell  encounter  collection  (Cicourel  d a t a were a n a l y z e d  parative  analysis  (Glaser  and Maxwell  the sibling's  such  as  tool  was t h e i n t e r -  instructions  of  by t h e p r o c e s s o f c o n s t a n t com1967;  The a n a l y t i c  was Glaser  asking the following  G l a s e r 1978;  unit i n this  perception of a specified  study  experience o r  concept.  i n t e r v i e w was  transcription  1964).  and S t r a u s s  1980).  indicators of this Each  The  study  t h e i n t e r v i e w d a t a were a n a l y z e d w i t h i n t h e c o n t e x t o f  The  any  i n a qualitative  a s s o o n a s t h e r e s e a r c h e r a n d t h e s u b j e c t make  Although,  the s o c i a l  was  of the data  transcribed  studied  line  (1978)  from by  the audio  line  to carry  tape.  following the  o u t open  coding  questions:  What i s t h i s d a t a a s t u d y o f ? What c a t e g o r y d o e s t h i s i n c i d e n t  indicate?  What i s a c t u a l l y h a p p e n i n g i n t h e d a t a ? What b a s i c s o c i a l - p s y c h o l o g i c a l f a c e d by p a r t i c i p a n t s ?  problem  i s being  What p r o c e s s i n g o f p r o b l e m s i s b e i n g done b y p a r t i c i p a n t s t o make l i f e v i a b l e ? ( G l a s e r 1978, p. 57) Each five  inch  process were  piece index  o f d a t a was t r a n s f e r r e d card  and then  t o a three i n c h by  assigned  t o a s many c a t e g o r i e s a s p o s s i b l e .  made  category.  so t h a t a separate As i t was f i l e d  card  could  through  a  filing  Duplicate cards be f i l e d  i n each  i t was c o m p a r e d t o o t h e r d a t a i n  42  -  the  same  category  and t o d a t a  (1978) t e r m s t h i s the  data  process  allows level  of  experience  regarding to  rather  coding  interview,  being  and  datum  The  a  being  process  the  of  Fracturing  were  data  and  were  ideas  coding  i n the d e t a i l  ideas  done  Notes  occurring After the  f o r the  f o r subsequent  categorized  Categories  and some  a t a con-  were w r i t t e n . was  Glaser  subject.  and o t h e r  process  data  added.  o f open  coding  means  by  c a t e g o r i e s were a l t e r e d  relationships  stantive  this  subsequent  deleted,  about  the data.  t h e p r o c e d u r e was r e p e a t e d  As  categories.  embroiled  related  categorizing  some o f t h e o r i g i n a l  were  becoming  possible relationships  initial  new  "fracturing"  than  the analyst during  views.  i n other  the a n a l y s t t o consider the data  ceptual the  -  were  and  inter-  compared  i n light  added,  first  of the  categories  recategorized with  continually  being  and c a t e g o r i z i n g  ( G l a s e r 1978, p . 5 6 ) .  notes  recorded.  i s termed  sub-  Substantive coding i s  c o n c e p t u a l i z i n g the substance  of  the area  of  research. Following and  t h i s procedure,  i d e a s were c a t e g o r i z e d , t h e d a t a  ized.  This  type  72).  of  This  coding  1978,  p.  tween  t h e s u b s t a n t i v e codes  be  the notes  integrated into  moved  from  coding  sorting  of ideas.  appears  t o account  indicates  At t h i s  As a  core  hypotheses  point,  to conceptual variable,  f o r t h e major  coding  (Glaser  the r e l a t i o n s h i p  indicating  of data  relationships  compared and r e c a t e g o r -  i s theoretical  theory.  the sorting  about  be-  w h i c h may  the coding sorting  or construct  has  or the which  portion of v a r i a t i o n i n  -  behavior and  p a t t e r n begins  properties  iable.  In  time. It  this  This  i s not  a  of  Glaser  then  become  the  study,  a  as  they  relate  construct  can  only  be  to  began  to  categories  the  core  emerge  considered  an  var-  at  this  hypotheses.  fact.  data  data,  -  t o emerge, t h e n a l l o t h e r  sorted  construct  This words  are  43  analysis (1978,  process  p.  55).  can  be  It involves  conceptually  grouping  i t  theory  explains  what  which  summarized  into is  in  the  "fracturing  the  codes  that  happening  then  in  the  data".  SUMMARY This arrive day  to  treated  chapter  described  the  at a c o n c e p t u a l i z a t i o n of the day  living  for  cancer.  information his/her  has  available  perception  ception w i l l  when  be  and  a  child  procedure  followed  to  sibling's perception  of  in  In  the  next  to  the  sibling  the  presented.  the  family  chapter, which  the is  conceptualization  is  being  nature  of  integral  to  of  that  per-  - 44 -  CHAPTER I V :  THE CONCEPTUALIZATION OF THE DATA  INTRODUCTION The tion is  process  used  to conceptualize the s i b l i n g ' s  o f day t o day l i v i n g being  treated  f o r cancer  involved  interviewing  the  f o r the purpose  data  tual  level,  when  another as  described  siblings,  comparing  the  identifying  their  data  at  concepts,  the conceptual  relationships  scribed.  as  Preparatory  sources  of information  illness  i s presented.  Two p r e m i s e s  i n Chapter and  III  categorizing  and f i n a l l y  derived  to this  This chapter w i l l level.  from  a  available  looking f o r  The  the data  summary  pres-  concepts will  be d e -  of the nature  t o the s i b l i n g s  and  and  about t h e  underly the presentation of the data:  1.  " A l l settings and s u b j e c t s are similar while retaining t h e i r uniqueness" thus g e n e r a l social p r o c e s s e s c a n be s t u d i e d i n any s i n g l e s e t t i n g o r through any s i n g l e subject. " A t t h e same t i m e some p r o c e s s e s t h a t a p p e a r i n b o l d r e l i e f u n d e r some circumstances appear only faintly under o t h e r s " (Bogdan and T a y l o r 1975, p . 1 2 ) .  2.  The p r o c e s s o f f r a c t u r i n g t h e d a t a t h e n c o n c e p t u a l l y grouping i t i n t o codes r e s u l t s i n a t h e o r y which e x p l a i n s what i s happening i n the data ( G l a s e r 1978).  These data  i n the family  o f c o n s i d e r i n g them a t t h e c o n c e p -  r e l a t i o n s h i p s between t h e c o n c e p t s . ent  child  percep-  from  individual  two p r e m i s e s  allow  m u l t i p l e sources accountings.  the researcher  i n a combined Verbatim  form  accounts  to present the r a t h e r than as of  interactions  -  are  included  which the  THE  to  give  the  researcher's  NATURE  AND  45  -  reader  access  to  the  c o n c e p t u a l i z a t i o n s are  SOURCES  OF  INFORMATION  data  upon  based.  AVAILABLE  TO  THE  SIBLINGS I n C h a p t e r I p e r c e p t i o n was this  study  organize sense  as  and  data  tive  the  memory, and  t o the  pretation  of  that  tions  with sources  which are in as  In  of  a v a i l a b l e to the  t h i s has  in  the  conversation being  and  the  that  study  the  bility  on  Seriousness  Analysis in  so  of  population  a  was  fatal  The  their  a  used  illustrate  about  the  order  of  illness  Siblings as  "C",  in  conversathe  nature  experience  participating the  participated  researcher i n the  d e s i g n a t i n g the  i n which  inter-  component  segments  to  selec-  information  and  becomes  in  they  con-  speaker  first  spoke  reported.  of the data  8).  in a  section  sibling  i n the  of the  illness  thus  b e e n i n d i c a t e d by  C2  data  of  transform,  from the w o r l d  illness  siblings.  one  CI,  The  obtain,  that  (p.  have b e e n i d e n t i f i e d  as  A.  are  information  I f more t h a n  versation  this  siblings  conversations "R".  we  to  about the  information  perceptions. the  manner  siblings  their  and  which  respond  discriminative  available  by  f o r the purposes  structure information arising or  and  process  defined  Illness i n d i c a t e d t h a t a l l of the c h i l d r e n  knew t h e  potentially  outcome  was  i l l child's very not  diagnosis  serious.  alluded  to  The by  and  possithe  re-  46  -  searcher, directly  however  several  or indirectly  The  mother  seriousness  the  c h i l d r e n d i d mention  death  either  as a p o s s i b i l i t y .  i n one  of  -  of  the families  illness  had  been  related  that  the  discussed  with  the  c h i l d r e n b u t s h e was n o t s u r e t h a t t h e two y o u n g e s t c h i l d r e n really  appreciated  impression cussed  that  with  referred  the i m p l i c a t i o n s .  the p o s s i b i l i t y  those  the  initial  the  researcher  of death  two c h i l d r e n .  t o a death  o f another  hospitalization that  death  The r e s e a r c h e r  dis-  of that  family  t h a t took p l a c e  during  of their was  had n o t been  The s i b l i n g s child  had t h e  brother  something  indicating  they  had  to  thought  about.  The  Cl:  The s a d t h i n g was l i k e he s h a r e d h i s room w i t h f o u r o t h e r p e o p l e - f o u r o t h e r l i t t l e k i d s and one of the l i t t l e guys d i e d . B u t I d o n ' t t h i n k he e v e r f o u n d o u t a b o u t i t . We knew a b o u t i t .  C2:  He d i d ?  C3:  Yeah, y o u know down a t t h e e n d o f t h e h a l l where it said no u n a u t h o r i z e d personnel beyond this place. The l a s t room.  I d i d n ' t e v e n know.  above i n t e r c h a n g e  gaining toire  another  i s most l i k e l y  piece  o f knowledge.  an example o f a  of information  t o add t o t h e r e p e r -  The c o n v e r s a t i o n c o n t i n u e d  kids  were  sibling  really  as f o l l o w s :  C2:  The o t h e r little nice actually.  cute,  really  C3:  Yeah we met some k i d s who were r e a l l y of n i c e . Some o f them a r e b a l d .  Cl:  Yeah, i t s j u s t a m a t t e r o f r e a l l y r e l a t i n g t o them you know. I t s hard to talk. You s e e a b a l d p e r s o n on t h e s t r e e t and y o u c a n ' t t a l k t o h i m y o u  cool,  kind  - 47 -  know. You f e e l o u t o f p l a c e . But i f you that everyone's a f r i e n d p r e t t y w e l l . C2: At  Except this  point  The  researcher  The  topic  with  the The  of two  about  during  the of  moved o u t s i d e  not  of  in  the  death  ill  statement  in  but  i t appeared  child  was  s i o n of f e e l i n g  direct  and  was  the  sanctioned  The this  made by  He s 1  Medication The  ok  discussed the  to  their  sibling  others  in this  pre-  making  looked  that t h i s kind of  and  brother  made i n t h e The  the  mother  the  sad  expres-  family.  siblings  hazy.  one  now.  to the i l l  of the  child's  mortality  was  siblings.  He'11  make i t .  their  brothers  Taking  conversations as  was  again  sub-group.  had  with  mother.  researcher  moved b a c k i n .  Whenever I h e a r " l e u k e m i a " I always t h i n k about and t h i n g s l i k e t h a t . Sometimes when I l o o k i n t h e newspaper t h a t l i s t s s o r t o f where t h e dead p e o p l e s a r e sometimes I hope he n e v e r g e t s i n i n - i n t h e p a p e r where p e o p l e t h a t d i e - I hope he n e v e r g e t s t h e r e . T h a t ' s how I f e e l a b o u t i t .  a statement  B.  death  and  she  circle.  d i d i t come up  family  upset  talking  sibling  statement the  A more common r e f e r r a l  C:  nor  relationship  This  visibly  to  other  the  and  in this  i l lchild's  interview.  the  the  of  topic  pursued  younger c h i l d r e n  the  C:  C2  was  siblings  spoke  people.  i n t r o d u c e d a new  death  possibility  sence  mean  overcome  knew  indicate  their  received  knowledge  of  medication. details  of  - 48 -  C:  He h a s t o t a k e a l l t h o s e those awful p i l l s .  Cl:  On F r i d a y he y e l l o w ones.  C2:  He t o o k them a l l a t o n c e .  Cl:  He t o o k t h r e e a t a t i m e .  C2:  Four a t a time.  C:  We're n e v e r a r o u n d when he t a k e s h i s p i l l s he a l w a y s h a t e s when a n y b o d y ' s a r o u n d .  C:  E v e r y once i n a w h i l e . Monday a n d T u e s d a y s .  R:  Does he t a k e p i l l s  C:  I d o n ' t know.  Some o f t h e s i b l i n g s drugs  The  used  t o take  shots  and p i l l s .  s i x of  I think  those  Monday.  A l l  little  cause  Mostly  on o t h e r d a y s ?  I don't  see him.  knew t h e names o f some o f t h e  and one knew how t h e y  tasted.  Cl:  Once he made me b i t e  C2:  Like  Cl:  My b r o t h e r o n c e , I think i t was p r e d n i s o n e o r s o m e t h i n g he s a i d " I d a r e y o u t o b i t e i n t o one o f those". And I h a d t o . I t was y i c k . I hate i t . I had t o t a k e about t e n cups o f m i l k .  siblings  i n one o f h i s p i l l s .  i t was ok t h a t we b i t .  knew t h e d r u g s  caused  I t wouldn't  some u n p l e a s a n t  hurt us.  side-  -  -  49  effects.  C:  And when h e ' s t a k i n g h i s p r e d n i s o n e f o r a week he's i n a r e a l l y b a d mood. You d o n ' t g e t i n h i s way t h e n .  R:  Are h i s sore f e e t p a r t b e i n g h i t by t h e van?  C:  I think  C: sleeps week.  o f leukemia  i t s because o f h i s medicine  C.  When he to i t .  Diagnostic The  nostic the were  didn't  descriptions not involved  included  procedure.  offered  I c o u l d n ' t g e t used  Procedures  s i b l i n g s had a l l w i t n e s s e d  suggest  some p a r t  The l a n g u a g e that  health  of the diagthey  u s e d and  professionals  i n i n t e r p r e t i n g what was h a p p e n i n g  them t o u n d e r s t a n d  Their  mostly.  f o r the s i b l i n g s to get  have any h a i r  and T r e a t m e n t  or treatment  helping  from  i s j u s t s i c k on t h o s e d a y s . L i k e he j u s t i t s o r t o f away and h e ' s ok t h e r e s t o f t h e  Some o f t h e s i d e - e f f e c t s were h a r d used t o .  C:  or i s that  descriptions  such t h i n g s a s :  or i n  the experience.  of  treatment  procedures  witnessed  - 50 -  C:  I saw  having a needle  C:  I remember when t h e y h i s tongue.  R:  So tommorrow check-up?  C:  Uh  R:  What happens when he  Cl:  He  C2:  And, uh, t h a t , you  R:  So t h o s e a r e a l l t h e k i n d s t o him and he d o e s n ' t mind?  of  Cl:  Yeah.  thing.  he  just  what a t r a i n e d  The  stuck t h i s  just  goes  bum.  silver  for  a  thing  regular  under  little  huh. goes f o r one  of  those?  gets a couple of shots. they take know.  And  his  weight  h i s l . p . kind of  When o b s e r v i n g t r e a t m e n t s  C:  in his  eye w o u l d  the c h i l d r e n  and  things.  things that  d i d not  always  All happen  see  see.  When he was i n the h o s p i t a l l a s t y e a r and he d i d n ' t have a l l t h o s e w i r e s and t h i n g s we'd get him i n t h e w h e e l c h a i r and we'd p u s h him.  wires  and  things  presumably  refer  to  the  intravenous  tubing. Some reflect  of  the  emotional  psychosomatic  children's  descriptions  involvement  symptoms,  sadness,  in  of  what  they  saw  the  experience  including  fear,  empathy and  sympathy.  -  I  started  to feel  R  What d i d you  C  I  R  Did  C  Yeah.  R  What d i d you  C  Sad.  R  Sad?.  C  Yeah  saw you  51  sick.  see? having  see  -  a needle  them p u t  in his  bum.  i t in?  t h i n k about i t ?  I t ' s k i n d o f h a r d t o w a t c h i t . I w o u l d n ' t be a b l e t o do i t . I d o n ' t really l i k e watching i t . I g u e s s he j u s t l i k e s me b e i n g t h e r e .  C:  Whenever I go t o t h e h o s p i t a l sometimes and he s c r e a m s when he g e t s a n e e d l e t h a t makes me feel l i k e c r y i n g when he s c r e a m s and t h a t .  C:  You c a n ' t do a n y t h i n g you know. You c a n h o l d h i s hand b u t he's really n e r v o u s and he p u s h e s i t away. You know you can't do anything. It's scary.  . . . w i t h t h e s p i n a l t a p o r t h e bone marrow l y i n g on t h a t bed and t h e n u r s e s a r e a l l swarming a r o u n d him. And I t h i n k t h a t ' s one o f t h e t h i n g s t h a t really s c a r e s him. L i k e t h e r e ' s 10 p e o p l e a l l l o o k i n g o v e r him. He c a n ' t l o o k anywhere. And we t r y t o a s s u r e him b u t you know i t ' s k i n d o f - n o t really assurance i t j u s t p u t s more p r e s s u r e on him.  - 52  The  siblings  reacted  itself.  The h o s p i t a l a t m o s p h e r e t i m e s i t ' s so d i s m a l .  is  C2:  And  and  Cl:  I t ' s a l l grey  C3:  Whenever you go i n t o a b u i l d i n g l i k e i t ' s g o t a d i f f e r e n t k i n d o f s m e l l and  The  expression  everybody  experience  and  Hakes  THE  CONCEPTS AND The  special  i s talking and  "and  than  pretty  but  some-  everything.  everything.  everything"  the  nice  child  appears  a hospital everything. to  imply  i s able to a r t i c u l a t e  a  (Foss  1978).  first  THEIR INDICATORS concept  status  indicators  for  Creation  of  to  the  supporting  Special Status  1.  to the h o s p i t a l  Cl:  larger  A.  -  emerge  from  i l l child.  i t will  F o r The  now  111  Special  the  data  This  be  was  concept  that  of  and  the  by  the  described.  Child.  Status  of  the  111  Child  Parent. As cated  the that  cancer  was  the p a r e n t . The cology the  substantive the  illness  population  hospitalization  begun w i t h  trajectory  which  in  began  progressed,  perceived  differently  T h i s had  related  study  siblings'  treated  illness  coding  for both with  resulted  than the the of an in  that the  the the  other  initial  data  indi-  child  with  children  diagnosis.  c h i l d r e n with the  families  acute  by  illness  disruption  the  on-  comprising requiring of  normal  - 53  individual  and  family  member  ciated  with  to  way.  of  As  became one to  period  spending The  activities.  illness  This  parent(s)  absence  thus  the  react.  child.  family  long  by  the the  time  was  hours  at  Hospitalization  of  first  asso-  from  hospital  the  c h i l d r e n o f one  with  referred  home i n a  a  required  characterized  the  the  variables  s i b l i n g s were  retrospectively,  parent(s)  described  of  which  of  children, the  -  matter  by  the  the  ill  to  the  of  fact  family:  C:  My mom and dad - e i t h e r o f them was u s u a l l y a l w a y s at the h o s p i t a l . Sometimes we'd have t o s t a y a t t h e h o s p i t a l u n t i l a b o u t 11 o ' c l o c k and t h e n my mom w o u l d d r i v e us home and s t u f f .  C:  Yah, every the n i g h t .  o  Within status  the  for  usual  the  share  time,  other  their  usual  with  the  cipate  parental  an  child.  my  dad  or  subsystem  i l l child.  this  stayed created  was  receiving  time  and  attention.  to  family also  spend  sport  one  the  child  more  there a  for  special  more t h a n At  were r e q u i r e d  When d i s c u s s i n g  organized  mom  He  i n the  activities  to attendance at  C:  family  children  ill  in  of  night  time  the  same  to give  up  concerned  i n t e n t i o n to said with  his  parti-  reference  games:  I'd g e t t o some. Sometimes I'd g e t a r i d e w i t h someone b u t most o f t h e t i m e I'd m i s s i t . . . . It was k i n d o f a w a s t e o f money t o j o i n i t b u t we d i d n ' t know he was g o i n g t o g e t s i c k .  -  When lings  the c h i l d  and t h e p a r e n t ( s )  special  status  system.  This  reference  the ways  came  54 -  home  from  continued  t o the i l l  C:  He'd g e t i n t r o u b l e paying.  C:  I t ' s because y o u know.  The  special  tional  my  mom  attention  f o r the general  intake  the parent was  sib-  the s i b l i n g  sub-  statements  with  c h i l d as:  He a l w a y s g e t s h i s way.  i n which  within  i s r e f l e c t e d i n such  C:  concern  the  t o support the concept o f  f o r the i l l c h i l d support  the h o s p i t a l ,  He g e t s t r e a t s .  but I don't think  gives  attempted  adequate.  him s p e c i a l  o f one p a r e n t health  h e ' d e n d up  was  of the i l l  attention  reflected i n child  t o see t h a t  and t h e  his nutri-  The s i b l i n g s saw t h i s  concern  demonstrated as f o l l o w s :  C:  A w h i l e ago he was h o o k e d on mar shmal lows and a f t e r t h e h o s p i t a l my d a d made t h e m i s t a k e o f k i n d of g e t t i n g him t h e marshmallows. You know h e ' s k i n d o f i n a b a d mood and y o u m i g h t a s w e l l c h e e r him up. We g o t him o f f t h a t h a b i t . He'd a l s o g e t a b i g c h o c o l a t e b a r . So now y o u know a f t e r t h e hospital my dad b r i n g s him t o K e n t u c k y Fried C h i c k e n f o r some c h i p s and pop and e v e r y t h i n g t o g e t him s o m e t h i n g good t o e a t .  -  C:  He g e t s b e t t e r y o g u r t  C:  My mom went down t o t h e s t o r e and b o u g h t some S u p e r S o c c o , c h o c o l a t e m i l k and some g r a p e s t h a t I had t o d r o p i n t o h i m .  C:  He g e t s t r e a t s l i k e t h a t . E x t r a d r i n k s , my mom d i d n ' t u s u a l l y buy c h o c o l a t e m i l k , pop and s t u f f .  Ensuring lings'  with  reflected  was  also  how t h e y  R:  What do y o u do?  C:  P l a y o u t s i d e - o u t o f t h e way.  the s i b l i n g s i n a special  reported:  sib-  handled  area.  He s l e e p s a l o t .  child  The  saw t h e p a r e n t s  C:  also  that.  a concern.  I f h e ' s s l e e p i n g my mom  only related  ill  rest  - things like  C:  Creation  It  adequate  statements  t h a t problem  From  5-  5  point  o f view,  l e t s him s l e e p .  the i l l  child  was  dealt  way.  of this  special  t o concerns  occurred  just  with  s t a t u s by t h e p a r e n t s was n o t  about p a r t i c u l a r  regard  and h i s i n t e r a c t i o n s  illness  t o acceptable with  variables.  behavior  his siblings.  of the Siblings  -  56  -  C:  I u s u a l l y have t o p u t away h i s c l o t h e s Mom made him do i t - he j u s t s a t t h e r e  C:  He  R:  Do you time?  C:  Yeah - n o t  C:  L i k e u s u a l l y I d o n ' t l i k e l e t t i n g him g e t h i s way. I d o n ' t l i k e i t and t h e n i f I d o n ' t I u s u a l l y g e t in trouble cause he g e t s mad and screams and stuff.  The  words  behavior being  as  screams a mean  of  to  too.  you  have  a l l the  one  beginning  related  lot  the  to  give  time but  sibling early  in  special  in  most o f  indicated the  to  status  him  the  how  illness  - yesterday for awhile.  all  the  time.  he  saw  this  trajectory  accorded  the  ill  and child  because of h o s p i t a l i z a t i o n .  C:  He's learning that he has a l o t of authority b e c a u s e you see when he was i n the h o s p i t a l and e v e r y o n e t a k e s s p e c i a l a t t e n t i o n - g i v e him special attention.  The  relationship  appeared  parent  accorded  the  child  in  demanded  parent  to  2 .  turn  i l l child  to  be  circular  special  special  status  treatment  in and  that  the  the i l l  requiring  the  respond.  Conferring  of  Special  Status  on  the  1 1 1  Child  by  the  Siblings Continuous tive  comparing  codes i n d i c a t e d  that  of  data  granting  and  deriving  special  status  of  substan-  within  the  -  family  system  parent, the to  57 -  to the i l l c h i l d  but a l s o  by  was  the s i b l i n g s .  done  not only  I n one  incident  by t h e one o f  s i b l i n g s r e l a t e d how he w o u l d o f f e r t o p a y t h e i l l c h i l d e a t a bowl  with  other  much  i f they  havior  on  of salad,  o r go t o b e d .  s i b l i n g s i n the family ate properly  the part  of  p a r e n t when t h e s i b l i n g  He d i d n o t do  this  a s i t d i d n o t m a t t e r so  o r g o t enough  the s i b l i n g  was  sleep.  This  reinforced  be-  by t h e  h a d no money t o pay t h e d e b t and t h e  parent paid i t . Siblings child  because  concrete request  they  appeared  to confer  they  felt  could  do  of the i l l c h i l d  that  special was  f o r the was  status  something  i l l child.  on t h e tangible  To  i l l or  refuse  a  difficult.  C:  I f I want t o go t o S t a n l e y P a r k , he s a y s i t ' s n o t fair. Can I come? And I c a n ' t s a y no s o I u s u a l l y take him.  C:  I u s u a l l y t a k e h i m o u t t o t h e m o v i e s and t r e a t him. T h a t ' s how I t r y t o k e e p him happy.  Siblings rationalizing  r e f e r r e d to the m o r t a l i t y of the i l l c h i l d i n why t h e y c o n f e r r e d  C:  To make h i s l i f e  C:  He h a s n ' t  special  status:  better.  got long  on t h i s  earth.  -  To make me  C:  When we have a c o l d we have t o s t a y away from him. L i k e one o f t h e b i g t h i n g s i s Saturday morning cartoons. And l i k e y o u w a l k i n t h e r e and i f y o u have a c o l d l i k e you do a l o t o f t i m e s d u r i n g t h e l a s t week o f s c h o o l . L i k e i f he's s i t t i n g h e r e y o u k i n d o f have t o go o v e r t o t h e e d g e .  much  within the  -  C:  The was  58  following more  same d i a g n o s i s . status  on  forget  interchange  tolerant  the family,  special  forget,  of  i n d i c a t e s one  the  behavior  than o f a c h i l d This  a b o u t him,  sibling  a l l children  of the s i b l i n g s  of  of another was  y o u know.  the  i l l child  f a m i l y who  not prepared t o  with  an  oncology  had  confer related  illness.  R:  You f e e l t h a t along with?  C:  I think s h e ' s more s p o i l e d t h a n . 's not t h a t bad. L i k e I t h i n k s h e ' s t o o much s p o i l t . She a l w a y s wants h e r way when I'm h e r e . And i f she d o e s n ' t g e t h e r way she s t a r t s s t i c k i n g h e r t o n g u e o u t a t me and s t u f f l i k e t h a t .  R:  What h a p p e n s him t o do?  C:  He j u s t s l a p s me on t h e l e g o r s o m e t h i n g o r he j u s t s t a r t s s c r e a m i n g b u t he d o e s n ' t h i t o r a n y thing. J u s t s i t s t h e r e and c r i e s . T h a t ' s what he does. He r u n s i n h i s room and s h u t s t h e d o o r .  R:  He  C:  And l o c k s i t . He it. Sometimes he come o u t .  R:  He  C:  I f I get He t e l l s  shuts the  she's  when  really  s p o i l e d and h a r d t o g e t  doesn't  do  what  you  want  door? doesn't always. He j u s t c l o s e s l o c k s i t when you t e l l him t o  won't come? t h e d o o r o p e n he me t o g e t o u t .  t h r o w s s o m e t h i n g a t me. T h a t ' s o n l y sometimes.  - 59 -  He h a r d l y e v e r l o s e s h i s temper. He's good t o g e t along with I think. Not a l l t h e t i m e b u t sometime .  3.  Siblings'  Requirement  f o r Outsiders to Confer  Special  S t a t u s o n 111 C h i l d The confer  data  special  as a d i r e c t  C:  The  status  that  siblings  on t h e i l l  requirement  child.  sought  R:  Do y o u r  C:  Yeah. them.  to protect  The  data  l o n g e r viewed  I  told  indicated as unusual  the family.  their  happened,  lings  daily  the i l l  them  i n t h e ways i n w h i c h child.  relationships.  i f they  that  over  the s p e c i a l they  touch  time,  him  I'd  kill  the s i b l i n g s  status of the i l l  began  of special  activities  the process  ?  S t a t u s o f t h e 111 C h i l d  Rather,  c r e a t i o n and m a i n t e n a n c e  sibling  to  statement.  f r i e n d s know a b o u t  Maintaining Special  into  outsiders  T h i s was e x p r e s s e d  i n the following  r e q u i r e m e n t was a l s o d e m o n s t r a t e d  within  wanted  He m i s s e s ( s c h o o l ) sometimes when p e o p l e have c h i c k e n pox. A l o t o f p e o p l e a r e t o t a l l y s t u p i d . Most o f t h e p e o p l e ' d phone up my Mom and s a y w e l l - ah - somebody's g o t c h i c k e n p o x . B u t some p e o p l e ' d send t h e i r c h i l d r e n t o s c h o o l and t h e n everybody gets i t .  the s i b l i n g  4.  indicated  During  status  f o r the i l l  n o t t o be t h e second  o f one f a m i l y were d i s c u s s i n g  child  t o incorporate the  and r e l a t i o n s h i p s .  appeared  no  an  child  When irritant  interview,  this in sib-  the eating habits of the  - 60 -  ill  child.  refusing  The  discussion  food which  was s e r v e d  He s a y s , "No I d o n ' t something d i f f e r e n t .  R:  What do y o u t h i n k  C:  I don't  siblings  summed  way.  No, I d o n ' t t h i n k s i c k and i t ' s j u s t status  as normal.  status  their  Through  on t h e i l l c h i l d ,  the creation daily  sick  you would  have  s o . I t j u s t t u r n e d o u t he was t h e way i t went I g u e s s .  f o r the i l l c h i l d  came t o be v i e w e d  the process and t h e n  and m a i n t e n a n c e  of  acting  a new s u b j e c t i v e  by  conferring to  of the special  a c t i v i t i e s and r e l a t i o n s h i p s ,  seemed t o be c o n s t r u c t i n g  A NEW  with  a p p e a r e d t o a c c e p t t h e new r e q u i r e m e n t t o  C:  porate  make him  way:  Do y o u t h i n k i f he h a d n ' t b e e n g i v e n i n t o h i m t h a t way?  special  So we  that?  R:  sibling  into  that."  up t h e new r e l a t i o n s h i p  the i l lc h i l d i n a special  Special the  about  family.  You k i n d o f have t o t r e a t him a s y o u u s e d t o t r e a t him b u t a l s o keep an eye o u t f o r h i m . L i k e y o u g i v e him s p e c i a l a t t e n t i o n b u t n o t so he r e a l l y knows, y o u know.  The treat  want  the i l l c h i l d  care.  i l lchild i n this C:  around  t o t h e whole  C:  One o f t h e s i b l i n g s the  centered  incorstatus  the s i b l i n g s  normality.  NORMALITY At  this point,  from  the data,  that  this  concept w i l l  a s e c o n d c o n c e p t a p p e a r e d t o be o f a new  normality.  now be d e s c r i b e d .  emerging  The i n d i c a t o r s  of  -  1.  Changes A  family  being  in Responsibility  part  of  the  where  a  child  changes  61 -  in their  siblings*  perception  was  treated  being  responsibilities.  responsible  as  being  living  f o r cancer  The  related  of  siblings  to  the  in  a  included  identified  illness  exper-  ience.  R:  Do y o u f e e l i n your l i v e s ?  Cl:  Yeah.  C2:  A l o t o f my f r i e n d s a r e more s p o i l t . We had t o get o u r own stuff. We have t o e a r n and work. L i k e we have t o b a b y - s i t and s t u f f . Not a l l my f r i e n d s b u t some.  We're more  I n one f a m i l y for  household  hospital  responsible.  chores  and c o n t i n u e d  that  began  to the  while  the i l l  child  was  in  present.  R:  I s t h a t when y o u l e a r n t t o c o o k ?  Cl:  Yeah. We d i d n ' t want t o e a t t h a t ( r e f e r r i n g t o a c a s s e r o l e b r o u g h t i n by a n e i g h b o r ) .  C2:  I'm s t i l l a p r e t t y good f a s t every morning.  the i l l  C:  i n assumed  cook.  functions  She h a s t o make clothes.  obvious  lings .  I make y o u r  break-  related to caring  child.  h i s bed  everyday.  The above comments were made v e r y no  h a s made a d i f f e r e n c e  s i b l i n g s related increased r e s p o n s i b i l i t y  Some o f t h e i n c r e a s e for  's i l l n e s s  i n d i c a t i o n o f annoyance  on  Put  away h i s  matter o f f a c t l y  with  the part  sib-  of the  -  62 -  One o f t h e i l l c h i l d r e n r e q u i r e d go  with  him t o t h e c l i n i c  aspirations  R:  when  Child:  R:  was  having  bone  you?  Yah.  What d i d he do f o r you?  Ill  Child:  Just  s a t and w a t c h e d .  R:  What d i d y o u do?  C:  J u s t s a t and w a t c h e d . I d o n ' t know he j u s t me b e i n g t h e r e . Somebody s t a r i n g a t h i m .  R:  Can y o u h o l d h i s hand o r  C:  My Dad d o e s .  This  sibling  clinic When  marrow  done.  You made h i m go w i t h  Ill  he  h i s oldest sibling to  had b e e n  appointments  asked  (Directed at the sibling)  from  i f he went  anything?  accompanying  early  likes  h i s brother  i n the i l l n e s s  to a l l of the c l i n i c  to the  experience.  appointments  he  said:  C: During less  I go t o some, d o n ' t go t o some. ear I guess. I go i f we've h a d a the f i r s t  feeling  done.  In  impression for  this  he had when bone  the that  the s i b l i n g .  C:  interview  second  sibling  described  the  was  i t by  the help-  marrow a s p i r a t i o n s were  interview  the experience  Just play fight.  being  i n v e s t i g a t o r had t h e  now  much  less  traumatic  He s a i d :  I t ' s kind o f hard watching t o do i t . I g u e s s he j u s t  i t . I w o u l d n ' t be a b l e l i k e s me b e i n g t h e r e .  - 63  Assuming rents  such  children the  as  in  clinic  lings 2.  functions  making  the  family,  from  siblings  sible  111  every  the  new  with  morning  accompanying  the  for  paother  i l lchild  normality  for  the  to sib-  Child  to  seeing  concern  requirement  Whereas  appear  for  of  indicated  status,  infection.  would  and  associated  family.  C o n c e r n s About t h e  nutritional  normally  breakfast  became a p a r t  in this  The  it  some  -  be  that  these  unusual these  for  about  the  rest,  i l lc h i l d ' s  and  protection  are  common p a r e n t a l  for  siblings  requirements  to  are  concerns  feel met  respon-  (Bank  and  Kahn 1982) . The  sibling's  concerns  are  indicated  i n the  following  quotations:  C:  I say t o him, in trouble."  "You  better  C:  Sometimes I pay him 5 0* f o r e a c h bowl o f eats. I t ' s the o n l y way.  C:  We have t o s t a y away f r o m him. L i k e one o f t h e b i g t h i n g s i s S a t u r d a y m o r n i n g c a r t o o n s and like you w a l k i n t h e r e and i f you have a c o l d l i k e you do a l o t o f t i m e s , l i k e d u r i n g t h e l a s t week o f s c h o o l l i k e i f he's s i t t i n g h e r e , you k i n d o f have t o go o v e r t o t h e edge.  Cl:  Also like  a t d i n n e r we had i t so I made him  eat  or  else  you'll  salad  (undecipherable). He a c h e e s e s a n d w i c h and  get  he  didn't my mom  -  64  -  was going t o make him s o m e t h i n g e l s e . Like you have t o keep him healthy. I t does a f f e c t him. L i k e us, i f we g e t s i c k , we s t a y i n bed f o r a c o u p l e o f d a y s b u t f o r him i t c a n be a l i t t l e more serious. L i k e i f one o f us was t o g e t c h i c k e n pox I t h i n k we've a l l had i t right? Yea. Well we w o u l d have t o move o u t .  C:  You k i n d o f have t o t r e a t him as you u s e d t o t r e a t him b u t a l s o j u s t k e e p an eye o u t f o r him. Like g i v e him s p e c i a l a t t e n t i o n b u t n o t so he really knows y o u know l i k e , oh you c a n s t a y up really l a t e t o n i g h t i s not r e a l l y going to h e l p him.  C2:  Yeah t h e n h e ' l l t o g e t up.  C3:  I f he's going him s l e e p .  R:  When  CI:  No. I t ' s a l s o b e t t e r t h a t he goes t o t h e school closer. I f need be my Mom can j u s t whip o v e r t h e r e and t h e y c a n b r i n g him home.  The  siblings  the  i l lchild  ill  child  to  really keep  health give  i n you  and my  won't be Mom  able  just  lets  d o n ' t mind?  about  other  One  of the  state.  some  sleepy  sleeping  were c o n c e r n e d  c h i l d ' s general  to  aspects  of  siblings  his  the  asked  of  his  gum  sister.  The  can  get  a c o u p l e more c a v i t i e s ?  responded:  IC:  I need  C:  What f o r ?  ensuing  them. So  you  conversation  c o n c e r n about g e n e r a l  C:  to  sleeps  ill  The  be  demonstrates  another  facet  of  health.  It's s t i l l a b i g r e s p o n s i b i l i t y t o worry about him. When he goes o u t he has t o wear two s w e a t e r s and s t u f f .  -  3.  R:  Does he l i s t e n t o y o u when y o u t e l l wear two s w e a t e r s ?  C:  Y e a h , he u s u a l l y l i s t e n s . When h e d o e s n ' t we h a v e one o f o u r o c c a s i o n a l l i t t l e f i g h t s .  Stress Associated When t h e c h i l d  often  on t h a t  fortable  with  child  time.  To  rity in  i l l siblings'  Variables  thoughts  were  I t was an uncom-  S a i d one o f t h e s i b l i n g s :  reduce  the stress  o f means.  I didn't  following  like.  I h a d my mind t o o  of the concomitants  of the  the h o s p i t a l i z a t i o n s , s i b l i n g s  One o f t h e s e i n v o l v e d  o f t h e h o s p i t a l and c l i n i c the  him he h a s t o  and T r e a t m e n t  and h i s p r e d i c a m e n t .  the treatments,  variety  Illness  was a c u t e l y  T h a t ' s t h e time much o n .  ness,  65 -  conversation  through  reducing play.  described  a  i l l -  used a  the authoThe s i b l i n g  visit  to the  clinic.  A c t u a l l y he's p r e t t y f u n a t t h e h o s p i t a l . Except when he h a s t o g e t h i s bone marrows. When h e ' s o n l.p. o r when h e ' s j u s t g e t t i n g h i s s h o t s h e ' s ok. We p l a y s o c c e r a f t e r i n s i d e . We s n e a k j e l l y b e a n s and s t u f f y o u know. Watch T.V. Eventually involved this  with  this  u s e o f p l a y worked t o r e d u c e t h e s t r e s s  bone marrow  conversation  a s p i r a t i o n s a s was e x e m p l i f i e d i n  from a l a t e r  interview:  - 66 -  R:  I h e a r y o u went marrow.  C:  Yeah. I had a l o t o f f u n a f t e r . We snuck ups t a i r s t o t h e k i t c h e n and s t o l e a b u n c h o f s t u f f . We d i d n ' t r e a l l y s t e a l i t - j u s t k i n d o f b o r r o w e d it. We e a c h h a d a c o u p l e o f i c e creams and p o p sicles and s t u f f and j e l l o s . Got jelly-beanfreaked-out.  Some distress  siblings  were  associated  with  cedures.  One  being present  of  the  this  successful  being  siblings  present  he  in  had  a  bone  reducing  a t treatment  described  C:  I started  R:  What d i d y o u s e e ?  C:  I saw a whole bunch o f b l o o d g o i n g  the pro-  h i s reaction  to  to feel  sick.  included a description  into  a  tube.  o f t h e room i n  reaction to being present: T h i s l i t t l e room i s where a l w a y s goes t o g e t needles. I t ' s w h i t e and he g e t s t r e a t m e n t s and he starts crying. W e l l , I would c r y t o o . Siblings  the  not  when  during a session.  Another s i b l i n g his  with  used  l a u g h t e r t o reduce  discussion of i l l n e s s when  laughter  experiences  C:  the i l l  variables.  accompanied child  was  stress  associated with  Siblings  demonstrated  descriptions of  unpleasant  undergoing.  I p r o b a b l y w o u l d n ' t be a b l e t o t a k e i n and f i g h t s i t o u t . (Laughter)  i t b u t he goes He screams a  - 67 -  lot  though.  (More l a u g h t e r )  C:  He h a s t o t a k e blood ( F o l l o w e d by l a u g h t e r )  C:  (Regarding t a k i n g p i l l s ) They t r i e d t o g r i n d them up and mix them w i t h i c e cream. B u t he c o u l d still t a s t e them. But he's got used to i t I guess. Anyway, y o u c h e c k t o see i f he's taken them. (Laughter)  Siblings r e n t (s) brother.  was In  expressed helpful a  that  tests  verbalization  i n understanding  discussion  and  about  this  things.  with  the i l l n e s s topic  Eek!  the paof  their  siblings re-  vealed:  Cl:  I f y o u d o n ' t know what's h a p p e n i n g you g e t c o n f u s e d .  R:  When do y o u g e t c o n f u s e d ?  C2:  Well like i f you don't know what's happening. They (the p a r e n t s ) don't r e a l l y say t h a t g e t s s i c k o r something o r about a l l t h e s e p i l l s o r anything.  Cl:  T h a t ' s what a l o t o f p e o p l e do and t h a t r e a l l y w r e c k s up t h e i r k i d s . You know t h e y d o n ' t u n d e r s t a n d what's h a p p e n i n g . Their l i t t l e brother or s i s t e r o r something t h e y ' r e t a k i n g a l l these p i l l s and e v e r y week t h e y go i n f o r an e x a m i n a t i o n y o u know and t h e y d o n ' t u n d e r s t a n d i t . So I t h i n k i t s b e t t e r l i k e t o be open w i t h t h e k i d s . And i t a l s o helps out because we c o u l d u n d e r s t a n d h i m and we t r e a t e d him l i k e he was t h a t k i n d o f p e r son. He was a l i t t l e s i c k b u t we n e v e r really hinted to i t .  Siblings  appeared  to inform  their  peers  and e v e r y t h i n g  about  the i l l  - 68 -  child  and  required  certain  maintaining  of special  that verbal  exchange  R:  status  from  of the i l l  a p p e a r e d t o be  Do t h e k i d s hospital  behaviors  at school  them  child  regarding but  beyond  goes  to the  limited.  know  that  and h a s t r e a t m e n t s ?  C:  Yeah.  They  don't t h i n k  about  R:  D i d you t e l l  C: R:  Yeah. Do t h e y happens?  C:  They  R:  Do y o u t a l k  C:  No.  R:  Have y o u e v e r t a l k e d about ?  C:  No. They won't u n d e r s t a n d . They j u s t They m i g h t f e e l s o r r y f o r y o u b u t i n s i d e r e a l l y s a y i n g oh who r e a l l y c a r e s .  C:  A l o t o f p e o p l e f e l t s o r r y y o u know. They'd t h a t i t ' s t o o b a d , y o u know, my f r i e n d s , y o u L i k e I was i n g r a d e s e v e n and y o u c a n be more w i t h them. They were p r e t t y f r i e n d l y a b o u t Nobody r e a l l y t a l k e d a b o u t i t .  R:  D i d you t a l k  C:  I only  them a b o u t i t ?  want  to  know  about  don't bother t a l k i n g  told  i t though.  leukemia  what  about i t .  t o them a b o u t i t ?  t o any o f t h e k i d s  t o your f r i e n d s  at school go, o h . they a r e  say know. open i t .  about i t ?  one p e r s o n a t t h e b e g i n n i n g .  V e r b a l i z a t i o n o f c o n c e r n s among t h e s i b l i n g s siblings  and t h e i l l  no  time  i n the interviews  to  support  that  and  child  extensive  also  o r between  a p p e a r e d t o be l i m i t e d .  d i d any i n f o r m a t i o n verbalization  with  come  At  forward  reference  to  - 69 -  the  illness  The  lack  experience took  place  i n the s i b l i n g  subgroup.  o f such c o n v e r s a t i o n was confirmed by one mother.  When q u e s t i o n e d s p e c i f i c a l l y  about  c o n v e r s a t i o n s the c h i l -  dren might have among themselves about the ongoing treatment procedures and sequelae she s a i d , "They don't t a l k about i t . They j u s t a l l do t h e i r own t h i n g . " .  4.  M o r t a l i t y o f the 111 C h i l d As  part  o f the new n o r m a l i t y s i b l i n g s were c o n f r o n t e d  with the e s s e n t i a l l y mortal nature o f man. the  mortality  sibling. ill  of the i l l c h i l d  Consideration of  seemed d i s t u r b i n g  f o r the  One of the s i b l i n g s i n d i c a t e d t h a t thoughts o f the  child's potential  f a t e were c l o s e t o the s u r f a c e .  Whenever I hear "leukemia" I always t h i n k about and t h i n g s l i k e t h a t . Sometimes when I look i n the newspaper t h a t l i s t s s o r t of where the dead, peoples a r e , sometimes I hope he never gets i n - the paper where people t h a t d i e - I hope he never gets t h e r e . That's how I f e e l about i t . Denial associated trolled.  seemed t o be used t o h e l p t o reduce the a n x i e t y with the thought o f the leukemia not being con-  T h i s i s r e f l e c t e d i n such statements as:  He had leukemia. He doesn't have j u s t a matter o f s t a y i n g h e a l t h y .  Well I don't know. leukemia anymore.  i t now. I t ' s  I j u s t don't see him as having  However, when d i s c u s s i n g with statement ill  the kinds  of t h i n g s t h a t concerned her about the  c h i l d t h i s interchange  What kinds of t h i n g s do you worry about?  C:  About death. expressed  concern about t h e i r own m o r t a l i t y .  C:  I'm a f r a i d t o get cancer. hate cancer.  C:  I h a r d l y ever t h i n k about i t and when I do I j u s t f e e l l i k e running away cause I don't want t o t h i n k about i t .  could  child  took p l a c e .  R:  Siblings  They  the s i b l i n g who made the l a s t  I t h i n k I would d i e .  r e c o n c i l e f o r themselves  had  t o undergo  unpleasant  the f a c t  diagnostic  that  the  I  i l l  and treatment  procedures.  5.  What i s Normal? Normal  appeared  appeared  t o be r e l a t e d  t o be  a  subjective  construct.  It  i n p a r t t o the amount o f d i s r u p t i o n  s i b l i n g s perceive i n t h e i r d a i l y l i v e s .  R:  So you say t h a t t h i n g s have changed your whole l i f e .  C:  L i k e we couldn't do s p o r t s i t ' s g e t t i n g back t o u s u a l .  changed. then.  That i t ' s  But r i g h t  now  - 71 -  And  another s i b l i n g  said:  Usually everything s p o r t s and s t u f f . Normality Siblings one by  also  described  t o have  I t was  of usual  the  m o t h e r , who was a t e a c h e r ,  child when the  that  roles.  statement  one  talking family  the i l l  was  normality  was  his activities.  about  the state  He's  played  with  I  play  connotations. every-  t o the resumption i n d i c a t e d t h i s by  child  was i n s c h o o l  subbing.  associated  with  In t h e second  of the i l l  s i t u a t i o n the s i b l i n g s  Like  n o r m a l when  One s i b l i n g  u s u a l l y when  family,  resuming  structural  related i n part  the  In  now.  t h e s i t u a t i o n as being  was a t home. the parent  seemed  i s normal  the  i l l  interview,  c h i l d ' s h e a l t h and  volunteered:  h i s friends a lot.  Does h e ? He's  played  the piano.  Does h e ? He d i d t h a t  He t o o k l e s s o n s , the h o s p i t a l . The walking menon  i l l child properly  took  mality.  place  i n one  f o r several as t h i s  of  before  the f a m i l i e s  months.  t o o became  he went i n t o  had  n o t been  An i n t e r e s t i n g phenoincorporated  into  nor-  - 72  don't  see  R:  You  C:  I j u s t see him - I d o n ' t know - he's j u s t and I have t o c a r r y him e v e r y w h e r e I go.  Incorporation when  a  "cause"  been  struck  reason  the  happened the  by  preceeding  two  interview  not  walked  taking.  this  for  The  this  of  ill  c h i l d ' s limp.  a  van?".  siblings  6.  Why  lack  The  event,  The  sibling  of  "Why  of  the  reference  after  the  the  gave c l u e s  mobility  d i d n ' t you "I  as  the  i t  had  within  accident  for  attri-  Much l a t e r the  in  child  medicine  had  he  was  t h e y were  into normality  s a i d to the  had  walked  a b o u t how  n e i g h b o r h o o d had  replied,  that  not  related that of  child  happened  had  -  occurred  gave t h a t  accident.  because  the  The  i t had  child  of t h i s  i l l child  normal  slow  as  well.  asked about  the  sibling  was  tell  her  did,"  and  who  I was  h i t by  a l l of  the  important  to  solution.  Normal?  statements  in  the  anymore?  indicating  fact  sibling  time  this  Redefine  component  with  same  c h i l d r e n i n the  researcher  ception  a result  siblings  walk,  examination  seemed happy w i t h  Two this  and  being  occurred.  the  actual  weeks  some  One  of  not  younger s i b l i n g s  incorporating the  of  leukemia  as  normal  In  The  damage as  the  telling  could  having  event  One  ago.  months.  b u t e d no  was  a van.  child  as  this  which  awhile  several  of  him  -  which  siblings  i n considering the  the  made became  concept of normality  conceptualization  experience  under  as  a  of  the  siblings'  per-  study.  The  first  made  to undergoing d i a g n o s t i c  tests.  was  -  73 -  He's g o t u s e d t o i t I g u e s s .  The  second  was made w i t h  reference  t o the necessity t o  u n d e r g o c h e m o t h e r a p y and s u f f e r i t s u n p l e a s a n t s i d e - e f f e c t s .  It's just a natural thing things. Like a chore. It  appeared  that  more e f f e c t i v e l y living  in a  by r e d e f i n i n g  dealing  family  -  everyone  normality  h a s t o do  s i b l i n g s were  w i t h t h e c o n c o m i t a n t s o f day t o day  where  a  child  was  being  treated f o r  cancer.  THE  RELATIONSHIP  BETWEEN  THE CONCEPTS AND  THE PROPOSAL OF A  CORE VARIABLE The to  be  pears  concept of s p e c i a l status  integral that  status  t o the concept  over  time  beginning  construct  normal.  It  normality  i s the core  child,  a  to accept  o f a new n o r m a l i t y . with  as  diagnostic  incapacitation  that  normal  of  i n this  data.  the special child  constitutes  of  redefining  The r e d e f i n i -  t o make i t p o s s i b l e status  f o r the s i b of the  i l l  t o r e g u l a r l y undergo  t e s t s and t r e a t m e n t s ,  of the i l lc h i l d  I t ap-  concept the  what  the process  f o r the i l l  appears  the creation of special  definition  variable  appears  the necessity  unpleasant  new  i s proposed  of normality  lings  child  and i n s u p p o r t o f t h e m a i n t e n a n c e o f t h a t  siblings  tion  f o r the i l l  and t h e p e r i o d i c  as a r e s u l t o f treatments.  -  The  mortality  redefinition  of of  the  ill  normality  74  -  c h i l d was  not  incorporated  in this  data.  into  the  SUMMARY This perception family the  is  next  researcher's of  day  being chapter  conceptualization  to  conceptualization day  treated the  living for  cancer  discussion  to the  when  will  literature.  of' the  another  has  sibling's in  the  been p r e s e n t e d .  In  focus  on  child  relating  this  -  -  75  CHAPTER V:  DISCUSSION  INTRODUCTION Chapter and  a  new  identified  normality  Redefining the  IV  normality  following  research  as  concepts  was  discussion,  data  will  be  the  perspective  will  Second, pared  be  the to  Finally,  compared  similar  of  concepts used  be  the  study. the  data.  a  core  variable.  literature  in studies with  themes  to  the  found  in this  arrive  a  at  the  from  which  the three  reflect  chronicallyi l l in  study in  of  In  the  this will  study. be  com-  literature.  described  con-  discussed.  THE  LITERATURE TO  THEMES FOUND  THIS STUDY In  in  emerged f r o m t h e  discussed  COMPARING THEMES IDENTIFED IN IN  child  the  life  with  ill  as  for  conceptualization  found  identified  methodology  ceptualization will  this  themes  concepts  that  r e l a t e d to  First,  sibling's  status  identified  perspectives.  child  special  this  s e c t i o n , themes  literature The  scarcity  perspective.  limited of  are  compared  number  studies  identified  of  to  those  studies  reported  in  which  studies of  reported  the  present  r e f e r r e d to  reflects  address the  siblings  - 76 -  A.  Negative The  F e e l i n g s such  presence  cluding  anger  experiencing ture  by  the  data  Although  did "not  their  people  attention  1975,  p.  in this  living  would  be  In  with  a  demonstrated to  siblings  and  could present  of  by  admitted  a  than  on  the  Kung,  using has  that  with  the  a  focus Taylor  a  that of  to  child's of  an  siblings  life-threatening  adult's  was  similar  that  view  here  and  than  the  these  they  a methodology  that  to  anticipation  (Bogdan  different  Most  reports.  factor  demonstrated  and  1975).  similar  study,  at  litera-  parental  theme  things"  believe  child  Burton  operative  vastly  to  in  guilt  Spinetta,  1977;  a  to  i n -  illness  interpretation  of  the  view.  support  prominent  is  i s reason  different  sibling's  formed  society  There  about  1971;  the  siblings,  things differently,  (1980), study,  the  accompanying  this  different  employed of  in  interpret  on  in  referred  that  Perhaps  Furth  adult.  the  found  10).  conception  they  be  Resentment  were based  anticipated  would  do  is  (Share  authors  materialize.  only  that  these  i t was  not  with  Kagen-Goodheart  of  suggestions  feelings,  authors  and  feelings  resentment  these  1976;  Anger  negative  and  several  Schwartz of  of  as  parental reports of  siblings,  occasionally  S.  having  saying  or  doing  identify  as  being  study  themes. part  of  d i d not This the  Taylor  negative  (1980)  death  wishes  to  the  cruel  or  angry.  not  siblings'  to  and say  for  i l l  they  siblings their  child The  resentment  perception.  feelings  found  things  show a n g e r is  the  may The  i l l  which  data as not  in  being have  interview  - 77 -  may  not  have  feelings time  may  elicited not  have b e e n  Isolation  part ill  a  of  p e r c e p t i o n or  these  component o f p e r c e p t i o n a t t h e  and D e p r i v a t i o n  S.  Taylor  of  the  child,  tionships  (1980)  siblings with  time  and  not  seem the  ness  t o be  attention to  or  an  were  support period a  factor The  extensive  ment p r o c e d u r e s .  this in  found  as  time,  of  a  of  however,  of some  child.  formed  a dyad  which  i n terms of p a r e n t a l present  that  isolation  the of  be  trajectory  the  factor  treatment  was  or  ill-  included  in  not d a i l y  a  can  treat-  involve-  procedures.  of  (1982) a l s o the  family  illness the  a  does  which  of p a r e n t a l time  Bowditch  that  may  study  f i b r o s i s both of which  i n treatment  the  rela-  s t u d y t h e r e was  and  of  family  specific  cystic  the  from  The  but  on  effect  i n T a y l o r ' s study  dedication  reported result  to  children  decreased p a r e n t a l a t t e n t i o n ill  single  child  illness  related  Harder  concept  siblings  together same  study the  ill  finding, the  isolation  isolated  prevalent.  In t h i s  ment o f p a r e n t a l t i m e  support  largest  feeling  p o p u l a t i o n w i t h asthma and  The  the  of  F e e l i n g s of d e p r i v a t i o n  variables.  involve  feelings  as t h e p a r e n t ( s ) and  time  sampled,  found  siblings  e x c l u d e d them.  the  aspect  of the i n t e r v i e w .  B.  of  this  of  siblings. was  one  siblings  does  drawn child.  not They  closer At  complained  as p a r e n t s s p e n t more t i m e  the  about with  -  C.  (S.  of  Taylor  the  change  by  the  The  two  with  study  exemplified  i t was  may  reflect  the  the  study,  i l l  child  as  and  was  present  lies'  crisis-oriented  a  sample  or  length  remission  current more the  the  study,  than  eight  study.  lize. the  Also,  period  ment for  the  about  the  feelings study.  family This not  and been  child  associated  with  data  difference,  perception.  this  had  The  as to  by  reasoning  death  newly  the  cases were  in  established.  been  in  the is  method  may  symbolic  more first  interview supported  the  In  the for  throughout stabi-  and  also draw  a  from  treataccount picture  communication  resulted  in  an  of  expression  technique i n the  of the  remission  diagnostic  c h i l d r e n to  have  a  h o s p i t a l i z e d apart  initial  asked  time  indication that  relationships to  been  one This  diagnosed,  time  for  of  where  in remission  the  may  two  no  the  perception.  others  had  facilitate  method  only  In  particularly  remained  had  lies  of  theme  in  been  collection  elicited  This  had  quality  e x i s t i n g at  is  i l lc h i l d r e n  neither  period.  period  months  There  There  theme  of  i l lc h i l d .  a  theme  is,  a  component  and  possible  The  that  terminal.  both  the  illness  remission.  period,  primary  as  included  be  conceptualization  quantity  regarding  the  to  different.  with  dominant  of  exacerbation, of  to  change the  the  parents  not  in  was  as  related  stage  was  However,  losses  concerns  but  found  researchers  loss  in  reviewed  1979).  losses  relationships  child  lies  identified  change.  present  studies  1980;  lies  of  -  Change Two  of  78  used  in  findings  of  - 79 -  M. M. T a y l o r  (Taylor  descriptions depicted  1980)  which  indicate  o f f a m i l i e s were c o h e s i v e ,  f e e l i n g s of  S. T a y l o r  that  interview  but f a m i l y drawings  isolation.  (1980)  identified  change  in  relation  to  p o s i t i v e e f f e c t s of the i l l n e s s  experience  She commented on t h e s i b l i n g s '  acceptance of changes i n t h e  family  caused  and t h e i n c r e a s e d  bility  of the s i b l i n g  other  family  improvement formed  the i l l n e s s ,  members i n the  chores  functions  by  with  ill  child's child  treatments,  c h i l d ' s d i e t and m e d i c a t i o n s .  responsi-  to participating  i n the treatment  f o r the i l l  regarding  reference  f o r the s i b l i n g s .  of  the  illness  condition.  Siblings  and  some  assumed  and  monitoring  with or per-  parental the  i l l  She s t a t e s :  Some c h i l d r e n w e r e r e m a r k a b l y i n t u n e w i t h t h e i r p a r e n t s and t h e i l l s i b l i n g s ' f e e l i n g s and t r i e d t o a d j u s t t h e i r own b e h a v i o r a c c o r d i n g l y ( p . 1 1 5 ) . The f o l l o w i n g s t a t e m e n t s w h i c h w e r e made by s i b l i n g s i n Taylor's  study,  would have been  study  being  related  as  to the  identified special  i n the  status  of  present the  ill  child.  I cut the grass  f o r h i m s o he won't wheeze.  I h e l p h e r w i t h h e r s c h o o l work when she h a s t o m i s s s c h o o l so she won't g e t b e h i n d ( p p . 6 0 - 6 2 ) . H a r d e r and B o w d i t c h study  the s i b l i n g s  (1982) a l s o i n d i c a t e d t h a t i n t h e i r  r e f e r r e d t o c h a n g e i n c o m m e n t i n g on t h e  i n c r e a s e d number o f c h o r e s f o r w h i c h t h e y w e r e r e s p o n s i b l e .  -  In been  the  present  study  incorporated into  COMPARING  80  CONCEPTS  -  the  overall  redefining  IDENTIFIED  IN  THIS  IN  THE  LITERATURE  A.  of  the  111  The i l l  Status  creation  child  has  been  cybernetically the  world The  report  around  in  of  their  parents seemed  giving  of  of  in  STUDY  special  this  process  TO  SIMILAR  status for  data  as  s t a t u s of  literature.  and  made  special  children  brother's or  to  has  as  siblings  the  occurring respond  to  them.  of  to the  the  this and  need  child  support  as  f o r more  time  the  been  (1982)  fibrosis  The  being with  siblings  importance  needs.  statements  has  Bowditch  requirement.  i l l child's  following  i l l  and  cystic  sister's  accepting  the  Harder with  understand  priority  siblings family  their  described active  change  Child  maintenance  an  the  siblings  aware  also  as  concept  supported  and  of  normality.  CONCEPTS D I S C U S S E D Special  concept  with  They  of  report  reference  to  finances.  Mom a l w a y s t o l d me i f i t came down o r new c l o t h e s i t doesn't matter. can h e l p her have medicine anytime  t o no furniture So l o n g a s we she needs i t .  It's probably that little b i t o f e x t r a money. I c a n ' t t h i n k o f a n y t h i n g s p e c i f i c , j u s t e x t r a money we c o u l d u s e . But I r e a l l y don't mind because i t s to help Joshua. (p. 118)  -  Burton special  status,  of  siblings  and  extra  showing  a  towards  study  of  Anderson develop  which  (1981b)  found  social  normal  and  social  the  in  study  status  for  the  i t in  concept  parental  increased  in  families  sibling  the  was  of  reports  protection with  older  cystic  than  and  part  fining  the  (1975)  a  the  describes  person, the  illness.  of  the  larger or  was  the  were  the  to  normal  play  were  dis-  emphasized  intensified. to  child,  encouraged  i l l child  not  and  well  whereas  the  was  data of  of  but  This  process  the  type  of  identified  maintenance  the  this  in  which  actions  a  illness from  process  two from  normalizing the  this  study  special status  process  literature  i l lperson  in  constructing  identifying  The  and  the  of  special  child.  Normalization in  sick  by  Normality  normality  dressed  for  contribute  maintenance  of  construction  skill,  construction  i l l  the  children  psychomotor  would  analysis  creation  the  interaction  as  Redefining The  well  interaction  activity  this  for  relations  Social  parental  by  child  addressed  reality  mother-child  i l l  when  of  aggression,  the  social  couraged.  are  lowered  naming  child.  parent  B.  not  indicators  particularly  In  and  -  although  found  care  fibrosis i l l  (1975),  81  course  associated  has  new  indicates  for been  points the  of  i l l  child  termed  rede-  normality.  experience  as  the  that  has  of  view.  point a  with  of  basic  living the  been  Strauss  view  of  strategy  with  ad-  a  the used  chronic  strategy  are  -  dependent  on  treatment ness. this  such  factors  regimens,  Strauss  and  a  child  -  as  the  knowledge  i n c l u d e s an  s t r a t e g y by  82  individual's of  others  illustration  with  a  of  cardiac  symptoms,  about  an  the  i l l -  application  of  impairment.  . . u s e d t o be e s p e c i a l l y f o n d o f p l a y i n g cowboys and Indians. He was much i n d e m a n d a s an I n d i a n b e c a u s e t h e y were a l w a y s g e t t i n g s h o t and he c o u l d r e s t w h i l e he l a y down a n d p l a y e d " d e a d " , (p. 58)  This children able I  to  was  behavior were  walk  a  Anderson tion  as  ally  a  sickness the  and She  (1981  a  as  this  f o r the  said  b)  describes  of  the  understood of  families  important  normal  way  component  stated  was  child  in  "Why  i l l  study  when  child  not  d i d n ' t you  the  being  tell  her  van?".  therapeutic  process  i l l  children  illness, child.  the  component  sick  illustrated  d i s c u s s i n g reasons and  h i t by  was  in  regime. but  the  process  i n which and  They  did  normalizaof  chronic-  their  interactions  perceived  helping  parents  described  their  of  child's with  normalization  the  i l lc h i l d  not  consider  to the  of  the the  accept disease  they:  . . . c o n s t r u c t e d the i l l n e s s experience with the child and f o r t h e r e s e a r c h e r i n s u c h a way as t o normalize the experiencing of a pathological p r o c e s s ( p . 430) .  RELATING THE METHODOLOGY TO THE LITERATURE The grounded theory approach has been documented i n the literature blems.  as u s e f u l  i n the study  I t has been u t i l i z e d  understanding (Stern  about  of c l i n i c a l  nursing pro-  i n n u r s i n g r e s e a r c h t o gain an  the c l i e n t ' s  view  of the s i t u a t i o n  1980; Fagerhaugh and S t r a u s s 1977).  Two terms t h a t  appear f r e q u e n t l y i n l i t e r a t u r e i n r e l a t i o n t o t h i s approach are  ethnography  cinctly  and grounded  differentiates  theory.  between  these  Aamodt  (1982)  two approaches  indi-  c a t i n g t h a t ethnography r e f e r s t o c u l t u r e and c u l t u r a l cesses  whereas grounded  theory  T h i s study being concerned  refers  to social  suc-  pro-  processes.  with s o c i a l processes has u t i l i z -  ed grounded theory. The  data  collection  process  was  centered  around  e l i c i t i n g d e s c r i p t i o n s o f behaviors and f e e l i n g s r e l a t i v e t o s p e c i f i e d experiences. subjects support  a t time  Eliciting  intervals  of the v a l i d i t y  s i m i l a r data from the same  o f s i x months can be c i t e d i n  of the data.  Prior  t o the second  i n t e r v i e w with s i b l i n g s o f each f a m i l y being conducted tial  coding had been c a r r i e d out.  When t o p i c s which appear-  ed t o be r e l a t e d t o p r e v i o u s l y i d e n t i f i e d codes, concepts  occurred,  the researcher  ini-  concentrated  themes, and on asking  questions aimed a t c o n f i r m i n g t h e i r e x i s t e n c e and c l a r i f y i n g their ling to  meanings.  This  i s c o n s i s t e n t with t h e o r e t i c a l  samp-  (Glaser 1978) and with the suggestions of Aamodt (1982)  r e t u r n t o the scene t o recheck o b s e r v a t i o n s .  -  The would of  ideal  no  time  doubt as  interviews prompted day  a  were  experience pretation.  Glaser  The  "What  or  problem  within  and T a y l o r the  of  present  the  subject's  subject  at that  cations  being  moment  the experience  i s thus  i s  and r e a l i t y of a  the  view  of  experience  i n time  the with  ex-  to  of the  of  inter-  answer  the  o r i n t h e words o f  social that  psychological processes  the  scene?". take  on  a  different  study  subjectively  researcher  of  was  sense  qualitative  becomes  day t o  interpreting  made  then  process  Reality and  investigator  on here?",  the context  participants  the  i n the action  truth  1975).  which  i t i n the process  structural  period  impractical,  i s the basic  viable  for a  being  task  going  study  This  individual  of  for this  family  ( p . 179) h a v i n g  "What  life  a  remembered  sense  57)  concepts  perspective  by  discuss  researcher's  social  t o make  The  to  i s really  (1978 p .  process  during  The  making  with  observer.  i n reflection" or  collection  living  conducted  1981).  -  data  Consequently,  (Oiler  question  been  the siblings  "experience  dan  have  of  participant  living.  plored  method  84  must  world  as  (Bog-  defined  attempt seen  by  the following  to the  qualifi-  added.  Just as d i f f e r e n t people may i n t e r p r e t t h e same things differently, s o t o o may t h e same person interpret things differently at different times. (Bogdan  The living  study  when  of  another  the  sibling's  child  and T a y l o r  1975,p.  perception  i n the family  of  i s being  11)  day  t o day  treated f o r  -  cancer  i s  i n  affecting  part  those  collection  and  overcoming  a  existing  a  85 -  study  of  relationships  relationships. analysis  method  The  i n this  error  method  study  identified  and used  has been by  factors i n  data  directed  Sholter  at  (1974)  as  i n socio-psychological research.  Personal relationships a n d o t h e r human groupings do n o t e x i s t a n d f u n c t i o n a s m a t t e r s o f f a c t , b u t are maintained by t h e i n t e n t i o n o f members t o m a i n t a i n them . . . P e r s o n a l r e l a t i o n s h i p s need t o b e d e s c r i b e d i n a way e x c l u s i v e l y h u m a n ; i n t e r m s o f what t h e p e o p l e i n them a r e t r y i n g t o do. ( p . 223)  The  intimate  research  process  qualitative 1976;  of  an  reflection, uation,  Oiler  literature  analyzed,  into  the  collection  process  of  procedure,  and  Taylor  of  levels.  conducted  problem finally  bracketing  focus  as  by  a  same  sit-  process  was  Examples the data  data  as  controlled  the  This  of  involves  identification, the  the  Cicourel  Bracketing  receptive.  i n  criticism  1975;  suggests  views  at several being  researcher  frequent  clearer  opposing  review  a  bias.  and b e i n g  study  the  and  (1982)  observer  considering  i n this  as  (Bogdan  experience  questioning,  employed the  1979).  controlling  bringing  of  i s documented  methodology  Rist  means  involvement  include  was  being  the  data  analysis  pro-  the concepts  back  cedure . Fracturing together the  as  and then  relationships  individual  factors  the data  to identify  t o which  they  putting  are postulated what  i s going  are sensitive.  goes on  beyond or to  In fact,  asking  identify  N i s b e t t and  - 86 -  Wilson  (1977) found people  their  behavior.  argue  people  Bowers  have  an  unable  (1981)  ability  t o i d e n t i f y the causes  extends to  this  respond  conception  of to  p r o d u c t i v e l y to  i n f o r m a t i o n not f u l l y s p e c i f i e d o r r e p r e s e n t e d i n c o n s c i o u s ness.  They argue t h i s  knowledge argues  and  that  i s c o n s i s t e n t with a theory of t a c i t  implicit  the  latter  lends  method f o l l o w e d i n t h i s This  research  described  lity  of  of  the  periences  a  has  for  findings and  credibility  demonstrated  the  a  use  dilemma  tion  of  is a  f u n c t i o n of  would  be  the  research  utility  the  enhanced by  of  the  individual's reliabi-  number  of  additional  exdata  sampling.  of the approach of grounded theory does c r e a t e  i n terms of the t r a d i t i o n a l  the  researcher  I t i s recognized t h a t  c o l l e c t i o n including extensive t h e o r e t i c a l The  to  c o n c e p t u a l i z i n g an  situation.  sampled  This  study.  methodology  perception  responsiveness.  study.  The  data  approach to  collected  replica-  f o r a second  study  would be d i f f e r e n t and the i n t e r a c t i o n between the coder  and  the data w i l l  the  be unique  t o t h a t coder  and  t h a t data as  r e s e a r c h e r i s an i n t e g r a l p a r t of the data and the a n a l y s i s . In grounded theory the a n a l y s t must do h i s / h e r own the  codes a r i s e  from  the data and  coding as  the memos w r i t t e n by  the  a n a l y s t d u r i n g the coding process are i n t e g r a l t o the d e v e l opment did  not  of  emergent  find  theory i n the  theory  (Glaser 1978).  examples of r e p l i c a t i n g literature.  This  researcher  s t u d i e s u s i n g grounded  -  SUMMARY OF There  THE  i s support  status  to  sibling's  There used  i s also to  findings research  -  DISCUSSION  special the  87  and  a  i n the new  i n the  identify  the  of  study  this  normality,  perception  support  are considered  literature  as  for  and  their  postulated  literature  concepts.  f o r the concepts of  The  nursing  i n Chapter VI.  in  f o r the  relationship this  methodology  implications practice  study.  and  of  the  nursing  - 88 -  CHAPTER V I :  SUMMARY AND CONCLUSIONS  SUMMARY OF THIS STUDY This  study  presented  conceptualization living  when  cancer.  This  concepts theory  study  differed  purpose  social of  experience  conducted  with  patients.  The d a t a comparison,  present  i n the data  concepts.  special  ill  the  primary  subjected  grounded  to conceptualize the when a n o t h e r  of  child  Interviews pediatric  t o a process to derive  normality  were  cancer  of constant  the  with  was i d e n t i f i e d  the concepts  child  being  of normality.  concepts  a s an i n t e g r a l  of the literature  has been contribution  as t h e c o r e  o f n o r m a l i t y and  identified  The s p e c i a l  o f t'he s t a t e d c o n c e p t s  by w h i c h t h e c o n c e p t s This  of  and t o d e r i v e r e l a t i o n s h i p s between t h e  A review  presence  siblings  and r e c o d i n g  was i d e n t i f i e d  normality.  was  t r e a t e d f o r cancer.  status of the i l l  child  research i n that  processes.  were  i n the data  to the r e d e f i n i t i o n  to the  treated f o r  t h e approach  o f day t o d a y l i v i n g  Redefining  variable  was b e i n g  previous  using  school-aged  coding,  from  t h e study  t h e f a m i l y was b e i n g  approach  p e r c e p t i o n o f day t o day  i n the family  identified  to identify  sibling's  qualitative  of the sibling's  child  were  The  in  a  a  as r e l a t e d  status of the  component o f t h e new indicated  support f o r  and f o r t h e m e t h o d o l o g y  were d e r i v e d . a  preliminary to  theory  study  and a s  development  such i t s  i s to  raise  -  questions Some  which  indicate  implications  SUGGESTIONS This  FOR  -  some  direction  f o r nursing practice  FURTHER  study  89  was  approached  processes  and  grounded  proach  t o the conduct  of this  graphy  which  the to  i s concerned  I t i s suggested  purpose  day  to  day  threatening  living  with  well  experiences  perception.  the tion  of  Taylor  over  data  over  time  the data.  be t h a t  a study  view  of  of  ap-  ethno-  cultural  pro-  be c o n d u c t e d f o r  o f each  of  of  alternative  and  i n contributing  to perception of  children  with  (1980)  life-  a  the i l l n e s s  are salient form  broad  would  i n the  help  variables  of  to  literature  trajectory  i n the  of  clarify  as  sibling's  longitudinal  spectrum  i n this  studies  day  to  the nature  to the sibling's  day of  percep-  living.  i n this  study  about  found  Health  time  of the data  reported  with  i n the  of these  knowledge  knowledge.  would  in relation  studies  sampling  o f day t o day  their  of  Research  relationship  The  point  An  culture  siblings  associated  studies  experiences  study  the u t i l i t y  by  findings  factors  and/or  theory.  such  theory  the  of the conceptualization  suggest as  from  illnesses.  Comparison study  of  from  with  that  o f comparing  t h e development  arise  research.  RESEARCH  social  cesses.  f o r future  indicate the  siblings  care  workers  siblings'  illness  condition  demonstrated do  articulation  n o t appear  an  i s  poor.  inadequate  t o be s e e n  as  i  i  -  a  source  mine  of  the  i n f o r m a t i o n by  nature  about  the  plays  i n the  family  tion  of  with  other  ison  of  illnesses tening.  is  This to  as  part  information  is  being  t o day  treated  but  study the  to  illnesses with came  which  more  was  the  for  living  in a  cancer.  i t s intended  limited  The func-  included  the  addresses  to s i b l i n g s  r e l a t e d to  literature.  under  long-term  has  was  research  the  of  children  i n the  compar-  These  long-term  of  lifethrea-  rubric  illnesses  validity  of  grouping  or  chronic  illnesses  the  sibling  i s sensi-  time. demonstrated  that  information  communicated  than  that  which  to  verbal  exchange  the  effect  of  him  about  is related verbally.  s t u d i e s which c o n c e p t u a l i z e  than  of  day  relative  of t h i s  at t h i s  cancer  of  this  explored.  other  much  broader  perception  information  suggest t h a t  standing  the  cancer  study  childhood would  and  generally  i n order  tive  condition  findings  with  deter-  information  child  Research  should  sibling's  long-term  the  Research  the  a l s o be  with  siblings. of  population  children  cancer  a  -  source  sibling's  the  should The  and  illness  where  adequacy  9 0  are  communication  important  the  presence  of  status  f o r the  ill  This  i n the  the  ill  under-  child  on  siblings. C r e a t i o n of family  s y s t e m c o n s t i t u t e s a change i n t h e  relationships. comparative where a c h i l d one  special  does n o t  Study  nature has  of  should  be  sibling  directed  within  p a t t e r n of at  illness  and  in  the  sibling  disclosing  relationships  a life-threatening  exist.  child  the  families  those  where  - 91 -  The variable this  identification  of  which  f o r the  data  suggests  definition of  this  accounts  of  the  the  demand  nursing.  s t u d y has The  as  about  which  sibling  the  his/her  or  care  collected for  assessing  of  individual's The  nature  the  is  new  the  need  a knowledge  made t o  the  therapeutic requirement  data  in  of  this  by  Orem  health-related,  may  and  have  the  for  has  nursing  has  demonstrated  c h i l d r e n with and  acquiring  ability.  terms  inadequate  the  exist.  a  ability  The  a need f o r  cancer  a  within,  Consequently  nurse  will  this  (1980),  function differently He/she  If  sibling  Interpreting  described  to  the  i n d i v i d u a l t o meet h i s / h e r  base  self-care  of  requirements.  exist.  s i b l i n g s of  was  understanding  the  inadequacy  actions.  study  of  determining  condition.  i s required  a  referral  necessity  the  which  assist  in this  a component o f  in  necessity.  illness  will  requirements  exists  part  the  meet  deficit to  core  behavior  i n c a l c u l a t i n g the  indicated  arisen  to  knowledge  the  process.  report  the  view  a  self-care  information  of  the  explored.  framework f o r n u r s i n g has  selfcare  coping  conceptualization  has  situation  of  of  The  data  the  be  and  reinforced that  information within  the  i n t r o d u c t i o n to t h i s  s e l f - c a r e concept  self-care  majority  as  PRACTICE  sibling's point  for  and  r e l a t i o n s h i p should  In  normality  r e l a t i o n s h i p between t h e  normality  IMPLICATIONS FOR  Orem's  a  redefining  selfdata  nursing  in relation  to  knowledge which i s  -  The are  data  active  process the  spent  quantity  of  of  more life  of has  ability  to  sibling  with  the a  role  i l lchild  family  study  this  react  sibling  might  utilized  be  direct  If  of the  they  have  care  a  workers.  the  sibling's  contact  the presence  the  individually  with  the  whole  of a  family  life-  and t h e  and as a u n i t .  The f o c u s  i n c l u d e t h e f a m i l y as a u n i t  as w e l l a s  Siblings  to may  i n such  to  concerns.  clarify  value  of  findings  which  are  admonishment of  to  the to  sessions would  group  learn  c a r e t a k i n g and  new  study  to  which  to  t h e whole  the  not  this  arises  expand  to  as h a v i n g  rests  particular  nurses  include  suggest  technique f o r  siblings  this  data  as a  encourage  s e s s i o n s as w e l l  The  cancer.  health enhance  that  on  perceptions  techniques  research  indicator  activity,  do  by  o f t h e group  eliciting  zation  his illness.  members.  success  iences.  as i n t h e  with the parent(s).  impacts  n u r s i n g must t h e n  The  with  i s an  to  role  as w e l l  child  i n maintaining the q u a l i t y  than  has r e i n f o r c e d  illness  members  individual  child  responsibility  fulfill  threatening  to live  to play  of the i l l  care  c a r e - t a k i n g and s u p p o r t  and by w o r k i n g  This  siblings  i n physical  the i l l  important  Nursing  of  that  of helping the c h i l d  time  much  has i n d i c a t e d  participants  -  92  scope  family  share  of  exper-  supporting  an o p p o r t u n i t y  in  the  study  from  sessions  but  specific i n the  the c o n c e p t u a l i of  practice  the  child  and with  -  93  -  REFERENCES Aamodt, A. 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" C o p i n g , V u l n e r a b i l i t y and R e s i l i e n c e i n C h i l d h o o d . " In C o p i n g and A d a p t a t i o n , e d s , G. C o e l h o , D. A. Hamburgs, and J . E . Adams. New Y o r k : B a s i c Books, 1974. N i s b e t t , R. E . and W i l s o n , T. D. " T e l l i n g More Than We Can Know: V e r b a l R e p o r t s on M e n t a l P r o c e s s e s . " P s y c h o l o g i c a l Review, 84.(1977) , 231-259. Orem, D. N u r s i n g Concepts of P r a c t i c e , McGraw H i l l Book Company, 1982.  2nd  O i l e r , C. "The P h e n o m e n o l o g i c a l A p p r o a c h N u r s i n g R e s e a r c h , 3 1 ( 1 9 8 2 ) , 178-181  edition.  New  York:  i n Nursing Research."  P e p l a u , H. "Theory: The P r o f e s s i o n a l D i m e n s i o n . " In P r o c e e d i n g s F i r s t N u r s i n g Theory Conference. U n i v e r s i t y o f Kansas M e d i c a l C e n t r e , D e p a r t m e n t o f N u r s i n g E d u c a t i o n , M a r c h 1969. 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U n i v e r s i t y of Washington, S e a t t l e , Washington, 1980. T a y l o r , S. The E f f e c t s o f C h r o n i c C h i l d h o o d I l l n e s s e s Upon W e l l Siblings. U n p u b l i s h e d m a s t e r s t h e s i s . V i r g i n i a Commonwealth U n i v e r s i t y , Richmond, V i r g i n i a , 1979. . "The E f f e c t o f C h r o n i c C h i l d h o o d I l l - n e s s e s Upon Well S i b l i n g s . " M a t e r n a l C h i l d N u r s i n g J o u r n a l ( S p r i n g 1980), 109-116. Tew,  B. J . and L a u r e n c e , K. M. " M o t h e r s , B r o t h e r s , and S i s t e r s of P a t i e n t s With Spina B i f i d a . " D e v e l o p m e n t a l M e d i c i n e and C h i l d Neurology, 15(1973). S u p p l e m e n t 29: 69-76.  -  99 -  v a n E y s , J . The N o r m a l l y S i c k C h i l d . P a r k P r e s s , 1978. . R e s e a r c h on C h i l d r e n . P a r k P r e s s , 1977.  Baltimore;  Baltimore:  University  University  , and S u l l i v a n , M. P. Status of the C u r a b i l i t y Childhood Cancers. New Y o r k : Raven P r e s s , 1980.  of  W i l s o n , H. S. " L i m i t i n g Intrusion - S o c i a l Control of Outsiders i n a H e a l i n g Community." N u r s i n g Research, 26(1977), 103-111.  - 100  -  APPENDIX  "A"  PARENT'S CONSENT FORM  I  am  nursing on  my  a  master's  family  of  this and  child  thesis day  i s being  I f you  8  nurse  at the U n i v e r s i t y  perception  in  registered  depending  our  talk  to talk  would  age  children  are  in  and  or  leukemia be  you with  between  agreement  careful  not  Through information children This  in  not  your  another  30  and  children,  home, like  in  working  children's  child  in  the  participate are  between  excluding  to talk  i f there  to  your than  I would a n t i c i p a t e  that  60  are  is  the  more  and  you  later  shared  at  I would  their preference.  have  with  t o t h o s e who  together,  speak w i t h them a g a i n a t a  If  I am  ( c h i l d r e n ) may  living  treatment.  last  student  f o r cancer.  like  on  graduate  Columbia.  when  I would  individually  one,  living  child  of  a  concerned  your  i s under  children  day  is  that  years  who  of B r i t i s h  which  treated  agree  study, 18  to  and  minutes. too,  I  If  may  the  ask  to  cancer  or  date.  the  diagnosis  please  l e t me  of  know, and  I  will  gain  more  on  other  t o g i v e them t h i s i n f o m r a t i o n .  this about the  study, the family  i n f o r m a t i o n would  I would  impact that be  of they  useful  hope n u r s e s serious can in  can  illness  share  with  understanding  parents. and  in  - 102 -  APPENDIX "B" CHILDREN'S CONSENT FORM  Kathie like  McLaughlin  to talk  brother  t o me  or sister  h a s e x p l a i n e d t o me  about  who  what  i s sick,  i t i s like o r has been  has  t o see t h e d o c t o r from time t o t i m e .  she  may  have that  tape  t o answer  questions  I can stop our t a l k s  SIGNATURE: DATE:  our conversations. that  that  to live sick,  a t any t i m e .  with  and  I have a g r e e d  I understand  I don't  s h e would  want  that  I  a  still that don't  t o answer a n d  -  103 -  APPENDIX "C" INTERVIEW SCHEDULE "As ested  we  have  previously discussed,  i n knowing time  about  how  I am a n u r s e ,  you see t h i n g s  during  the  that  i s sick,  doctor,  o r e v e n be i n t h e h o s p i t a l ,  from  needs  inter-  day t o day  t o go  to the  taking medicines  and s o  on. "  The series which  event  of the interview w i l l  o f open-ended will  effort The  remainder  depend  being  first  and p r o b i n g  on  made  the  t o cover  question  will  i n the s i b l i n g ' s  GENERAL  AREAS  TO  BE  CEPTION OF DAY TO DAY  1 ) 2) .3)  questions,  interviewee's the general  relate  response  areas  as a  the content with  listed  to a currently  of an  below.  significant  experience.  COVERED  IN  IDENTIFYING  SIBLING'S  PER-  LIVING:  Activities; Relationships; Feelings;  4)  I n t e r f e r e n c e s and A c t i v i t i e s ;  5)  Positive with  6)  be c o n d u c t e d  and  cancer  negative  aspects  i n the family;  Illness Variables.  of having  a  child  

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