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The arthritic pain experience of children with juvenile rheumatoid arthritis Riding, S. Barbara 1988

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THE  ARTHRITIC  PAIN  EXPERIENCE RHEUMATOID  OF  CHILDREN  WITH  JUVENILE  ARTHRITIS  BY  S.  BARBARA  RIDING  B.A. i n B i o l o g y , Whittier College, 1962 B.Sc.N., The U n i v e r s i t y o f A l b e r t a , 1984 A  THESIS  SUBMITTED  THE  IN  REQUIREMENTS MASTER  OF  PARTIAL  FULFILLMENT  FOR  THE  DEGREE  IN  NURSING  SCIENCE  OF  in  THE  FACULTY The  We  accept to  THE  OF  School  this  of  S.  OF  STUDIES  Nursing  thesis  the required  UNIVERSITY  ©  GRADUATE  as  conforming  standard  BRITISH  August,  1988  Barbara  Riding,  COLUMBIA  1988  OF  In presenting  this thesis in partial fulfilment  of the  requirements for an advanced  degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department  or  by  his  or  her  representatives.  It  is  understood  that  copying or  publication of this thesis for financial gain shall not be allowed without my written permission.  Department The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3  DE-6C3/81)  i i ABSTRACT  THE  ARTHRITIC  PAIN  EXPERIENCE  RHEUMATOID This  study  experience  affects the  perceive their  purpose  to  explore  of  school  lives  o n how  factors  on  the children's  pain  a n d how i t Therefore  d e s c r i p t i v e study  the a r t h r i t i c juvenile  (JRA) and to understand  various  JUVENILE  Canadian  a r t h r i t i c  qualitative  and d e s c r i b e  from  i s nonexistent.  age c h i l d r e n w i t h  arthritis of  of this  pain  research  and manage  daily  WITH  to investigate the  a r t h r i t i c  Previous  CHILDREN  ARTHRITIS  designed  of having  perspective. children  was  OF  pain  was  experience  rheumatoid  the  impact/influence  the construction of  that  experience. Ten  children,  early  (at 2  onset  arthritis  Descriptive indepth Using  to 4 years)  data  content  were  t o 13 y e a r s ,  or late  with  their  elements.  and  their  elements  An was  with  ( a t 7 t o 11  i n this  obtained  during  either years)  study. two  open-ended  the children i n their  a n a l y s i s , data  and  a r t h r i t i c  10  participated  interviews  children's  aged  were  analyzed  analytical developed  homes.  f o r themes  framework of  that  reflected  themes the  d e s c r i p t i o n s of and e x p l a n a t i o n s f o r pain  i n the context  of their  day t o day  i i i  in  the context  a r t h r i t i s , The  both  and  functioned.  day  to day and  perceived  the mediating They  cessation  inactivity, children meant  was  activity.  pain  limitations  i n  identified  and  with  The relation  pain's  findings to  supported  or  Implications addressed.  a r t h r i t i c  a r t h r i t i s current  of  selected refuted  activities strategies  was  relation and  attributed  "flare-ups,"  concern  with  they  i n  duration,  pain  with  they  pain  attributed to a c t i v i t y  children cope  synonymous  intensity,  A  with  i n how  a r t h r i t i c  of medications, and  t o be  factor  described  Intermittent  living  currently.  pain  distinguishing factors:  frequency. to  their  i n the past  children  a r t h r i t i s  to  of  f o r most  because i t  peers.  used  The  t o manage  unpredictability. this  study  research  were  studies  the f i n d i n g s  f o r nursing  practice  of and  discussed that this  i n  either study.  research  were  pain  iv TABLE  OF  CONTENTS Page  Abstract Table of Contents Acknowledgements CHAPTER  I:  i  INTRODUCTION  I n t r o d u c t i o n to Problem and Purpose Statement of Problem and Purpose D e f i n i t i o n o f Terms Assumptions Limitations Organization of this Thesis CHAPTER  I I :  LITERATURE  I I I :  IV:  8 9 9 12 14 14 15 18  METHODOLOGY  Introduction Selection of Informants Criteria f o r Selection Setting Selection Process Characteristics of Informants Ethical Considerations Data C o l l e c t i o n Setting/interview Environment The Open-Ended I n t e r v i e w Construction of Informants' Accounts The S e c o n d Open-Ended I n t e r v i e w ... Data A n a l y s i s I n i t i a l Phase F i n a l Phase Summary CHAPTER  1 5 5 6 6 7  REVIEW  Introduction S c h o o l A g e C h i l d r e n ' s P a i n E x p e r i e n c e .. P a i n as an E x p e r i e n c e .. Factors Influencing Pain C h i l d r e n ' s A r t h r i t i c P a i n E x p e r i e n c e ... J u v e n i l e Rheumatoid Arthritis A r t h r i t i c Pain Summary CHAPTER  i i v v i  THE  CHILDREN'S  20 20 21 21 22 24 26 27 28 30 31 32 33 34 34 35  ACCOUNTS  Introduction Description of A r t h r i t i c Pain Making Sense o f A r t h r i t i c P a i n  36 38 44  V  A f f e c t on D a i l y L i f e Coping with Unpredictable Summary CHAPTER  V:  DISCUSSION  OF  Arthritic  VI:  SUMMARY  AND  54 59 77  FINDINGS  Introduction Description of A r t h r i t i c Pain Making Sense of A r t h r i t i c Pain A f f e c t on D a i l y L i f e Coping with Unpredictable Arthritic Summary CHAPTER  Pain.  Pain.  80 80 84 89 91 94  CONCLUSIONS  Summary o f t h i s Study Implications f o r Nursing Implications f o r Nursing BIBLIOGRAPHY  Practice Research  95 97 98 100  APPENDICES A. B. C.  Introductory Letter P a r e n t ' s Consent Form C h i l d ' s Consent Form  109 I l l 112  vi ACKNOWLEDGEMENTS I w o u l d l i k e t o e x p r e s s my a p p r e c i a t i o n a n d thanks: T o my T h e s i s A d v i s o r s , e s p e c i a l l y t o M r s . H e l e n E l f e r t , Chairman, f o r h e r support, p a t i e n c e , and r e s e a r c h e x p e r t i s e , e s p e c i a l l y f o r making what seemed c o m p l e x , s i m p l e . A l s o t o Ms. C a r o l e R o b i n s o n f o r her encouragement, knowledge i n i n t e r v i e w i n g c h i l d r e n , and expertise i n data analysis. To t h e c h i l d r e n w h o s o w i l l i n g l y s h a r e d their s t o r i e s w i t h me a n d t o t h e i r p a r e n t s w h o a c c o m m o d a t e d t h e i r s c h e d u l e s t o my t i m e frame. To t h e V a n c o u v e r A r t h r i t i s S o c i e t y , e s p e c i a l l y t h o s e members o f t h a t a g e n c y ' s R e s e a r c h Committee and R. P e t t y , M.D, D i r e c t o r o f t h e P e d i a t r i c Program, J a c q u i e M a r t i n , S.W., a n d M a r g u e r i t e Mahy, R.N., f o r their support i n r e c r u i t i n g potential informants f o r this research study. To my p a r e n t s a n d f r i e n d s w h o i n s p i r e d a n d s u p p o r t e d me d u r i n g t h e h i g h s a n d l o w s o f g r a d u a t e s t u d i e s and t h i s thesis. Posthumously, t o K a t h e r i n e P o r i k o s Koopmans, P h . D . , my b e s t f r i e n d , a n d t o M a r v i n G e r s t e i n , M.D., mentor and c o l l e a g u e , f o r t h e i r encouragement and support during graduate studies.  1  CHAPTER I:  INTRODUCTION  I n t r o d u c t i o n to Problem and Purpose This study arthritic  i s an e x p l o r a t i o n of the experience of  pain f o r school age c h i l d r e n with j u v e n i l e  rheumatoid a r t h r i t i s  (JRA).  A qualitative descriptive  approach which sought to understand human  experience  from the p e r s p e c t i v e of the c h i l d r e n was used. Pain i s a complex, m u l t i d i m e n s i o n a l , experience  that i s d i f f i c u l t  measure, and c o n t r o l (Beyer 1985).  to d e f i n e , d e s c r i b e , & Byers,  c h i l d r e n with  s i m i l a r i l l n e s s e s or  i n j u r i e s do not seem to experience pain nor do they  not  1985; J e r r e t t ,  Because pain i s s u b j e c t i v e and p e r s o n a l l y  experienced,  1987).  subjective  s i m i l a r i n t e n s i t y of  respond i n s i m i l a r ways (McGrath,  Likewise,  s e v e r i t y of i l l n e s s  c o r r e l a t e with  pain i n t e n s i t y  or i n j u r y does  (Beales,  1982).  Other f a c t o r s such as age, c o g n i t i v e development, a n x i e t y , past  pain experiences,  children's perceptions  and meaning i n f l u e n c e  of and responses to pain  (Beales, Keen, & H o l t , 1983a; Beyer & Byers, 1985; Jeans, 1983; Ross & Ross, 1984b; S c h u l t z , 1971; Thompson & V a r n i , 1986; Wilkinson,  1983).  U n t i l r e c e n t l y , there was l i t t l e children's pain.  Understanding of c h i l d r e n ' s pain was  d e r i v e d from c l i n i c a l intuition,  interest i n  personal  observations,  assumptions,  b e l i e f s , and g e n e r a l i z a t i o n s from  2  the  adult  literature  Anderson,  1977;  pain  research  gaps  s t i l l  research healthy 1984b,  Ward,  exist  1984c;  Wegner,  that  pain,  identify  coping  evidence  also  Dunne,  Few  Jeans,  children's  1984a,  Tesler,  1971;  Tesler,  clearly  demonstrated  are able  when  about  to pain,  i n pain.  Some  perceptions  predictable  et a l . , 1983a;  and  of  and  fashion Gaffney  &  1983).  have  Laine,  Lacking  (Beales  of  1981).  feelings  i n some  Most  1983;  Savedra,  seven  used  pain.  Jeans,  that,children's  childhood  &  of  their  change  rheumatoid  Laaksonen 1977).  exists  have  &  major  (Abu-Saad,  Schultz,  & Ward,  t h e age  decade,  experiences  1984b;  studies  Eland  children's  of  1986;  1981;  strategies  studies  juvenile  Ross,  express  to pain  1986;  pain  Dunne,  Gibbons,  over  describe  &  &  research  throughout  Although  i n the past  acute  Gibbons,  Savedra,  responses  on  Ross &  children  1985).  1985;  hospitalized children  1985;  These  Byers,  i n our understanding  Gaffney  Wegner,  &  increased  focused  and/or  Jerrett,  Jerrett,  has  has  (Beyer  investigated  arthritis 1961;  perceptions  (Beales  Scott,  i s research  that  of and  pain  associated  with  et a l . , 1983a;  Ansell, &  Huskisson,  investigates  responses  to  a r t h r i t i c  pain . For limited  most  children,  to acute  their  episodes  pain  experiences  associated  with  mild  are traumas  3  of  childhood  procedure, children is  and  e.g.  who  assumed  (Singsen,  have to  be  heat,  a  a  et  joint  &  1983).  Berstein,  and  is  characterized  For  a r t h r i t i s  of  JRA  unpredictable  by  i s  an  remissions  and  more  (Calabro  etiology  is  unknown,  the  of  one  (Calabro than  boys  &  Although arthritis is JRA.  known  children  the  have  extent,  i s  a  pain  presence  In with  or  least  and  i t s between  and  years  twelve More  and  of  of  girls  rheumatoid  1986),  l i t t l e  children  this,  that  these  health  c h i l d r e n argue of  with  inconclusive.  understanding  absence  weeks.  duration  1981).  of  sparse  these  six  frequently  (Skevington,  spite  be  characterized  feature  experience is  to  1984).  prominent  common  pain.  working  eight  JRA  have  Although  most  Williams,  adults  no  and  of  unknown  1986).  (Beales,  research  there do  1986;  i s  of  connective  swelling,  must  at  pain  movement  illness  occurs  three,  with  about  professionals the  and  pain  (RA)  for  chronic  JRA  of  sixteen  joints  Londino,  affected  Previous  Presently  &  Londino, are  age  by  the  illness  the  diagnosis  exacerbations  severity  ages  the  the  of  limitation  c h i l d r e n under or  of  inflammation  or  for  a r t h r i t i s ,  to  pain  one  However,  facet  a l . , 1977).  confirmed,  sutures.  concomitant  refers  tenderness,  (Brewer  medical/surgical  juvenile rheumatoid  Johnson,  of  occasional  injections,  Arthritis tissue  the  a r t h r i t i c  about  pain.  4  Disagreement, "appears as  they  to  Brewer,  by  unlike  rarely  to  the  health  or  JRA  not  with  health  they  pain  daily  date.  experienced,  experience  i t can  i t has  perspective  that  (Ansell, 1982)  a r t h r i t i s , Because  i s few  children  seldom pain.  ask  them  Rather  children  no  1983;  unless  they  pain. JRA  perceive  and  exists)  and  how  affects  been  Because only  describe  for  behavior  Cassidy,  pain.  behaviors  with  not  personally  common  others  that or  (1985),  various  experiencing  ( i f pain  to  meaning  of  mild  literature  A  1982;  assume  has  of  rheumatoid  children  lives,  Byers  professionals  are  have  Canadian  a r t h r i t i c  and  Person,  professionals  How  (p.153).  complain  complaining,  their  &  &  meaning  researcher  complain,  whether  Beyer  the  pain"  adults  with  to  over  Giannini,  children  are  arise  relate  observed  that,  according  them.  documented  pain the  i t and It  is  missing  Therefore,  this  study  experience  of  i s from  pain  is  in  and  who  articulate the  the  subjective  children  manage  the  children's  most  of  the  literature.  pain  years, group.  since  JRA  investigated  children,  occurs  more  age  eight  frequently  the to in  a r t h r i t i c  thirteen this  age  5  Statement The the  of Problem general  dearth  pain  questions  which  What  Purpose  problem  of knowledge  arthritic  children  and  which about  guided  this  study  addressed  the experience  f o r children with  JRA.  study  i s the experience with  this  i s  of  Specific  were:  of a r t h r i t i c  pain f o r  JRA?  1.  Do  children with  2.  How  3  What  4.  How  does  5.  How  do  The  pupose  JRA  experience  a r t h r i t i c  pain? do  they  perceive  i s their  of  cope  this  their  study  was  the a r t h r i t i c  pain  children  with  rheumatoid  understand the  Definition The use  of  of school  a r t h r i t i s ,  of various  age  and t o  factors  on  experience.  terms  are defined  to c l a r i f y  their  study:  pain:  Any  occurs Children:  and  Terms  following  i n this  Arthritic  of that  lives?  to explore  experience  the impact/influence  construction  daily  with i t ?  describe  juvenile  pain?  i n t e r p r e t a t i o n ofi t ?  i t affect  they  arthritic  Girls years .  pain  associated  with  during  the course  of the  and/or  boys  age  eight  JRA  that  illness.  to thirteen  6  Meaning:  S i g n i f i c a n c e or sense  of pain from  the  c h i l d ' s p e r s p e c t i v e as i t i s experienced w i t h i n the context of h e r / h i s day  to day  living. Pain:  "Whatever the e x p e r i e n c i n g [ c h i l d ] says i t is,  e x i s t i n g whenever she/he says i t does"  (McCaffery, 1972,  p.  11).  Assumptions This study i s based 1.  C h i l d r e n with JRA  on the f o l l o w i n g  assumptions:  are capable of d e s c r i b i n g what  pain i s f o r them, when asked. 2.  C h i l d r e n with JRA  are capable of g i v i n g s u b j e c t i v e  meaning to t h e i r pain experience. 3.  C h i l d r e n with JRA  are w i l l i n g  to t a l k with  the  researcher about t h e i r pain experiences. Limitations This study recognizes the f o l l o w i n g l i m i t a t i o n s : 1.  Data c o l l e c t i o n i s dependent upon the a b i l i t y  the researcher to e s t a b l i s h rapport and the c h i l d r e n and skills 2.  (Field  Depth and  3.  gain t r u s t  with  upon the r e s e a r c h e r ' s i n t e r v i e w i n g  & Morse, 1985). r i c h n e s s of the data i s c o n d i t i o n a l upon  the a v a i l a b i l i t y data  of  of informants  and  time a l l o t e d f o r  collection. G e n e r a l i z a b i l i t y of f i n d i n g s i s r e s t r i c t e d  children participating  in this  study.  to the  7  4.  Sample  diagnosed  i s limited with  Organization This Chapter  and  how  review  of  IV  presents  discussion  of  selected and  years.  i n the following  backgound  Chapter  I I I i s the accounts  study's  research  conclusions.  pain.  constructed.  accounts  findings  studies.  study's  methodology,  were  Chapter  V  of  their  i s a  i n relation  Chapter  way.  which  f o r this  the children's  arthritic  this  two  been  the l i t e r a t u r e ,  the children's  with  summary  i s organized  purpose.  of  had  Thesis  the theoretical  experience  other  f o r a minimum  this  thesis  including Chapter  of  I I i s a  provides problem  JRA  t o c h i l d r e n who  VI  to  i s the  8  CHAPTER  I I :  LITERATURE  REVIEW  literature  review  Introduction The this  purpose  study  research  i n the context  based  literature study's  problem  pain  children's pain  a neglected  reveals  a  decade,  paucity  children  affects pain.  daily  children this  school  pain with  age  children's The where  relation  lives,  literature  age  children  studies  rheumatoid  pain w i l l  increased i n  children  literature that investigate  non acute they  i s known  pain  has  the  of Canadian  c h i l d r e n ' s acute  pain,  manage  about  this  the  school  a r t h r i t i s reviewed  how i t  age (JRA).  pertains to  experiences  and  experiences. be  f u r t h e r reviewed  the f i n d i n g s of this to other  of  the literature  arthritic  f o r this  the  research  a n d how  nothing  juvenile  pain  perceive  experience  chapter,  research  review  of research  Specifically,  a r t h r i t i c  A  themselves  their  and  a r t h r i t i s .  non acute  area.  background  f o r school  Although  place  this  to describe  rheumatoid  is  V  purpose:  juvenile  the past  In  and  i s to  experiential  Furthermore,  the theoretical  of a r t h r i t i c  in  how  of previous  literature.  provides  experience with  of this  research  study  studies.  w i l l  be  i n  chapter  discussed  i n  9  School  Aged  In known  Children's  this  about  A  children's  review  pain  measurement  children's measure  pain  (Beyer  arise  developmental  McGrath,  children  quality,  al.,  pain,  growing  (Lavigne,  recent  t h e age  pain  that and  measurement  pain,  c h i l d r e n and  Schulein,  when Ross  1971;  &  other  Hahn,  research seven  &  1986;  of  &  et  1984;  that  location,  (Gaffney  strategies  Dunne,  Savedra  1986;  et a l . , 1981;  a l . , 1981).  Pain  i s conceptualized  Experience  subjective  an  i n the l i t e r a t u r e  experience  dimensions As  i n terms  i n pain Ross,  to  communicate v e r b a l l y  coping  as  1986).  can  shown  identify  Pain  affective  has  related  and  Tesler  an  of  d i f f i c u l t i e s  experiences  feelings;  use  1983;  Schultz,  and  of  agree  1985).  to  of  focused  describe  Jerrett,  related  methodological  and  they  complex  to define,  be  to  has  Researchers  1985;  w i l l  related  research  subjectivity  changes  over  their  Jeans,  the  experiences  most  pain.  i s generally  1987).  quantifying  that  acute  factors  Despite  about  that  Byers,  of  what  the l i t e r a t u r e  d i f f i c u l t i e s  because  influencing  of  on  pain  i s d i f f i c u l t &  Methodological  acute  reveals of  Experience  literature  children's  presented.  on  section,  Pain  with  sensory,  (Wilkinson,  experience,  1983;  i t includes  as  a  cognitive, Lavigne both  et  10  perception  and  Berelson  Steiner  &  individuals into  a  response.  (Canam,  1980;  individuals situations  different  from  than but  do  both  there  i s  from  of  of  maturation.  Several  Dunne,  trends 54  1986;  in  healthy  and  interviews  ages moves  of  eleven  from  a  were and  which  stimulation Researchers  that  the  way  relation  to  their  respond. (1969),  respond  1982;  that  suggests  to  pain  Thompson  that  children  perspective  literature  and  &  i s  that  differently  Varni,  1986),  children's  follow  some  Piaget's  evidence with  researchers 1983)  discrete  found pain.  years,  Jeans  the  perceptions. She  thirteen,  increasing  increasing  of  examined  used.  of  (Beales,  have  concepts  c h i l d r e n , 5-13  pain  in  unique  concepts  children's  children's  world.  Innhelder  pain  i s  pain  1987)  by  to  development.  Jeans,  communication, in  of  there  abstraction  &  &  agreement  cognitive  However,  the  they  a  (Beales,  no  process  stress  The  perceive  conceptualizations stages  how  adults.  adults  of  themselves  Piaget  world  the  according  i n t e r p r e t sensory  1957)  influences to  i s  picture  perceive  the  children  and  Strong,  According perceive  (1964),  organize  meaningful  Perception,  1983b;  and Gaffney  developmental In  a  study  (1983;  Children's found  that  idea  to  own  process drawings  between  concept  of  personal  developmental  children's  primarily physical  age  of  incorporate  the pain a  11  more  psychological  that  children's  increasing  age  Gaffney perceptions cognitive  perceptions and  & Dunne  studied  children's  pain  680  children  boys  and  divided 14  girls into  years  with  As  a  5  t o 14  per year  years  5  t o 7,  to Piaget's  an  children  asked  to complete  school,  either  written  form  groups  were  differences children's i.e."a  verbally  analyzed  analysis between  groups.  something," feeling,"  and  of  30  12  to  was  of  cognitive  "Pain  administered  from  sorted  i n  the  three  into  variables f o r  significant  Results change  indicated from  that  concrete,  to semi-abstract, i . e .  t o more  of  children or i n  binary  of pain  consisted  sentence,  Data  to determine  definitions  or  were  i n  t o 10, and  was  to younger  f o r themes  &  questionnaire,  this  children.  Categories  thing,  "sensation  open-ended  Gaffney  sample  8  of  a mimimum  stages  questionnaire  to older  categories. chi-square  The  with  pain  larger  sample  of age. Their  groups:  stages  changes  Their  Using  (p.106).  with  children's  i n Ireland,  development.  i s . . . "  of a  developmental  to correspond  were  that  Piaget's  part  definitions.  three  indicate  i n accordance  argue  d e s c r i p t i v e study  (1986)  findings  change  (1986)  development.  school  Her  maturation.  are consonant  qualitative Dunne  component.  abstract,i . e .  the  12  physiological increase  researchers  1981) have  trends  Factors Most  that  Some  of those  anxiety/fear,  (Beales,  1983).  pain  is  and i n c o n c l u s i v e .  influencing children's  i s not well  factors  How  An  frequently  these  i s necessary  pain  a t t i t u d e s , and E l l i o t t ,  &  factors because  awareness,  indicates  when  that  influenced  children's  behavioral  responses  out that  children  of pain  In  a  of  age, Schultz  when  1986;  research  however,  of  studying  pain.  literature  survey  psychological  previous  understood  experience  complain  pain i s  1983; W i l l i s ,  subjective  point  and  most  parental  influence sparse  pain.  & Varni,  changes,  1982; C r a i g ,  1982; W i l k i n s o n ,  et  developmental/age  children's  developmental  are developmental  experience,  of  1987; Thompson,  1983).  mentioned  The  children  Pain  agree  by numerous  Wilkinson,  Jay,  as  1984; Savedra  defined  descriptions  Influencing  (McGrath,  & Ross,  no w e l l  authorities  influenced  meaning  (Ross  found  i n children's  factors  definitions  i nage.  Other al.,  or psychological  (Schultz,  study  i n pain,  over  o f 74  (1971)  rather  vary.  children  that  tried  Some  years  1971; Whaley  found  pain  by numerous  eight  school  they  because  i s a  factors, authorities  of age  rarely  & Wong,  1983).  10 t o 11  children  to appear  years  rarely brave  cried  and i n  13  control. al.  Similar  (1981)  children, lack,  of  i n 9  their  to  12  literature,  are  intensity  of  (1987)  not  pain.  behavioral  totality  of  their  and  emotional  (p.  150).  aspects  observations  of  indicator  their  overt  of  asking  research  that  children's their for  She  non  of  children's  of  pain  behavioral  the  quality  emphasizes  influenced  and  that  by  experience,  the  sensory  aspects  she  to  To et  experience"  against  understand a l . (1986)  their  Lavigne  stress be  the et  the  sole  that  assessed  by  pain. the  need  qualitative  experiences and  as  children's  should  indicates the  using  behaviors  about  investigates pain  that  cautions  clearly  1983;  of  the  themselves  (Jeans,  this  reflect  subjective experience  them  suggests  and  Lavigne  acute  hospitalized  control.  further are  et  learning  pain.  literature  Savedra  result  review  subjective experiences  children  The  the  children's overt  behaviors,  children's  i s  intrinsic  Therefore,  and  Schultz  indicators  and  pain  by  children's overt  responses  factors  healthy  maintain  i n her that  reported  age.  to  direct  their  developmental  of  need  stresses  responses  of  expression  growing  McGrath  were  study  years  emotional  children's  "their  findings  to  for  aspects  of  understand  meaning  pain  a l . , 1986).  has  14  Children's In  Arthritic  this  rheumatoid w i l l  be  a r t h r i t i s  and  illness  pain  to i n  juvenile children  or  onset  1984;  &  Whaley  arthritis  unknown, and  i s  one  a  &  boys  Londino, are  1986;  disease  incidence/prevalance  For  personal the  joints as  most  eight  and  (Beales,  6  have weeks  " s w e l l i n g of  of  JRA  that  to  &  a  joint  has  Gerrity,  affect  and  emotional  According tissue  Petty  i t s etiology  frequently  i s  between  years  1981).  1984).  to  disease  More  Since  girls  JRA  i s  a  accurate  are  unavailable.  1987). be  confirmed,  persistent a r t h r i t i s (Jacobs,  years  may  twelve  Canada,  communication,  must  for  JRA  Williams,  i n  chronic  rheumatoid  Although  statistics  diagnosis  sixteen  defined  joints.  affected  non-reportable  1982).  in  age  educational,  connective  and  a  school  illness  Petty,  children acquire  (Calabro  the  of  Juvenile  social,  painful  years,  presence  illness  children (Perrin  such  more  chronic  during  one  1982;  or  three  (Petty,  the  1983).  physical,  JRA  to  developing  i s  (Jacobs,  affecting  one  Wong,  (JRA)  children's  (1982),  related  of  for  growth  Arthritis  indicates that  implications  more  a r t h r i t i c  Rheumatoid  literature  childhood  under  related  reviewed.  The  than  Experience  section, literature  Juvenile  one  Pain  1982). or  children i n  one  Arthritis  limitation  of  or i s  motion  15  with p.  heat,  pain,  or  tenderness"  (Brewer  et  a l . ,  1977,  195). JRA  i s  remissions and  a and  duration  also  variable  exacerbations (Calabro  v a r i a b l e . In  insidious  onset  5  or  after  a  longer; one  few  pain  1977;  Petty,  experience  1982),  of  few  Two  joints years  by  have  with  a  severity  Prognosis  flare-ups  an  et  and  arthritis acute  for  onset  complete  (Brewer  i s  experience  persistent  a  feature  1982),  remission  a l . , 1982).  indicates  children's  compared and  adults  (1961)  researchers as  children,  joint  study  observed adults.  JRA  et  4  to  14  was  complain  years  of  8  pain  some  pain.  in  in  The  that  Finland  children  Laaksonen  years)  and with  &  these  joints  consisted  under  the  Cassidy,  because  children's  et  experiences.  conducted  conducted  (8  of  pain  intensity  sample  to  research  a r t h r i t i s .  that  about  a l . , 1982;  a r t h r i t i c  pain  known  (Brewer  According  scarcity  with  The  i s  JRA.  Brewer  a  arthritis  l i t t l e  children with 1983;  of  quantitative studies  arthritis  painful  1986). children  others  children with  investigates  Laine's  i s  (Ansell,  literature  England  s t i l l  or  unpredictable  most  have  involving  Pain  While  authors  of  followed  some  more  months  Arthritic  al.,  or  illness  Londino,  arthritis  remissions;  involving  &  general,  partial years  chronic  were  of and  not  as  twenty-four thirty  16  adults, joints such  18  to  were  as  years.  examined  and  pain  bearing.  for  experience  children  react  arthritic  adults.  4-point  A  pain  visual  were  children's adults  used.  scores  joint  with  similar  These  researchers  under  5  The l i t t l e  years  findings to  of  The  disease  not  these  early  between  children,  and  responded More  and  developmental have to  influenced  a r t h r i t i s  because  (1977) to  17  for  VAS  11%  of  were  children,  contribute  17  pain  developmental  years,  differences how  mostly  VAS.  consider to  and  severity.  studies  2  and  that  than  and  the  to  pain  activity  indicated  the  years  and  and  children  other perceived  pain.  recently, other  investigated  f a i l  on  that  children's arthritic  differences  would  disease  that  2  (VAS)  activity  they  and  adults  Huskinsson  scale  on  because  factors  than  motion  pain.  complete  understanding  These  pain  findings  lower  of  concluded  children,  for  measures  palpation  in  experiences  adults.  on  &  100  matched  range  Ansell  reported  could  to  95  multiple  researchers  analogue  were  using  movement,  descriptive scale  severity  group,  inflammation,  less  Scott,  each  pain  differently  Similarly, studied  on  These  children  and  In  swelling, active  exercises; weight  51  British  researchers  children's perceptions (Beales,  Holt,  Keen,  of &  have  a r t h r i t i c  Mellor,  pain  1983a;  17  Beales,  Keen,  studied  pain  The  purpose  children  in  of  to  of  old  joints  I n i t i a l l y ,  l i s t ,  their  and  then  Lastly,  severity  of  findings  indicated  sensation,  pain  e.g.  Furthermore, a r t h r i t i c  as  Children  aching,  sharp,  or  from  11  pathology  and  reminded  joint  to  were  from  a  their 17  the  and  conducted  was  never  words  that  sensations  meant  unpleasantness scales.  a r t h r i t i c  years  as  them  concluded  sensations  some  joints.  perceived  did  children 6  did  not  perceive  sensations to  17  as  their  that with  the  to  11  the  representing  year  representing of  and The  than  12  and  predetermined  analogue  years  whereas  sensations  associate  disease  "pain"  what  severe  the  researchers  felt  olds  a l l children experienced  perceived  These  year  children varied  interviews  visual  burning  pathology,  6-11  children rated  two  to  Sample  children selected  that  6  joints  systemic  described  more  damaged  involved,  c h i l d r e n 12  pain  from  The  term  a r t h r i t i s . which  experienced.  The  (1983a)  meaning  children.  aching,  years.  internal  on  a l .  the  twenty-four  joints  the  et  children with  whether  Semi-structured  how  them.  39  pain  c h i l d r e n ' s homes.  described  Beales  sensations  groups:  to  mentioned.  word  to  year  respect  of  explore  level  two  12-17  the  to  the  prognosis.  1983b).  perceptions  attributed  consisted  with  Holt,  was  influenced  fifteen  &  old  children  internal  restrictions. more  internal  children pathology  and  18  restrictions likely  in  activities  children  might  and  ambitions,  experience  those  the  more  sensations  as  pain. Likewise, children 36  with  children  children's rate  to  about  affected his  were  from  17  that  and  39  6  olds'  children  12  internal  pathology  "severe  visual  imagined  his  and  of  how  were  surface  pathology.  his  did  17  years and  internal  (3),  scale  not  6  terms  be,  how  have categories  to  motor  11  year  olds 12  internal  that  children  of  immediate  internal  to  to  structures, while  perceived their  and  body  These  Most  visual  than  to  appearance,  f i n d i n g s showed  rather  years  Responses  arthritis  who  75  questions  used.  categorized.  i n  11  analogue  i t made  children  arthritis  signs, to  a  to  ended  pictures represented  Their  perceived  Open  and  pictures representing year  children  were  internal  concrete  of  interviewed  athritis  body,  (p.482)  pathology. years  he  a l . (1983b)  years.  subjective feeling,  a b i l i t y , drew  17  drawings,  "what  a r t h r i t i s "  to  12  feelings  different  et  a r t h r i t i s ,  own  questions: it  Beales  pathology,  arthritis  restrictions  i n  as  a  6  to  11  whereas terms  of  result  damage."  Summary The children  literature can  experiences.  reviewed  verbally But  their  has  shown  communicate perceptions  that  about of  school  their  and  age  pain  responses  to  19  pain  are influenced  investigates from  supported  qualitative  8  12  self-statements daily  warranted their  the need of  year  i f we  perspective.  a  how  i s scarce.  pain  on  the  pain  study  that  children's  pain, manage  to understand  that  This  study  a r t h r i t i c  qualitative  they  Research  a r t h r i t i c  f o r further  arthritic  and  were  having  o l d Canadian  about  lives,  factors.  children's  Therefore, to  of  perspective  aspects  experiences. explored  numerous  the experience  the c h i l d r e n ' s  scarcity  their  by  i t saffect this  a r t h r i t i c  pain pain  on seemed from  20 CHAPTER  I I I :  METHODOLOGY  Introduction The  purpose  describe age  of this  the experience  children  with  impact/influence of  that  "when a  (p.  14).  Canadian  and  under  qualitative  ethical  on t h e c o n s t r u c t i o n & Morse  guided  w i l l  selection collection,  a  the collection  chapter,  the data  c o n s i d e r a t i o n s , data  topic,  about  experience,  In this  headings:  on a  i s known  pain  approach  and analyze  (1985),  i s appropriate"  nothing  of the data.  the following  f o r school  the  to Field  study  since  descriptive  to collect  pain  information available  children's a r t h r i t i c  analysis  used  factors  According  Therefore,  qualitative  t o explore and  of a r t h r i t i c  of various  i s l i t t l e  descriptive  was  JRA and t o understand  experience.  there  study  the process  be of  described informants,  and  data  analysis. Selection The  Informants  sampling  described range  of  technique  as p u r p o s e f u l ;  of experiences  with  used  that  i n this  i s , informants  t h e phenomenon  (Diers,  selected  had JRA f o r two t o t e n years  have  had s u f f i c i e n t  whether  pain  was a  experience facet  Thus,  with  of their  c a n be  have  had a  under  investigation have  1979).  study  the ten children and a l s o  arthritis  experience.  t o know  21  Criteria  for  Selection  Criteria  for  selection  (a)  were  (b)  had  between  eight  confirmed  minimum (c)  spoke  (d)  resided  of  and  and  that  years  rheumatoid  informants:  of  age,  arthritis  for  a  years,  understood  i n  twelve  juvenile  two  required  the  English,  Lower  and  Mainland  or  on  Vancouver  Island. The  rationale  follows:  The  informants were  twelve JRA.  to  years In  language  f i r s t  have  able  supporting three  had  talk  coincided  s k i l l s  are  able  experience.  additional this  section fourth  and  to  w i l l  final  to  second  that JRA  of  eight  onset  developed  However,  age be  as  was  and  peak  explained  of  The  final  sample  13  years  o l d , who  time  of  met  The  to  Of  reason  for i n  the  Informants."  and  financial of  about  include  subsequently  the  this  eight.  study  was  consisted  age  to  and  verbally  the  thirteen.  criterion  by  adjusted  "Characteristics  because  as  with  range  communicate  criterion  informants  entitled  preference  10  age  adjustment  age  the  adequately  their  the  with  was  determined  experience  The  are  they  progressed,  i t .  criteria  children's cognitive a b i l i t i e s  Therefore, pain  criteria  sufficient  about  addition,  these  The  researcher's  ten  constraints.  children,  study's  aged  criteria.  22  Set t i n g The agency  sample  where  was  obtained  adults  and  from  children  a  Vancouver  are  treated  community for  arthritis . Selection The now  be  process  evident  parents,  acted  children.  cited  i n  to  as  (Bodgan  &  The  &  "who  Agency's  pediatric  nurse  a v a i l a b i l i t y Since at  informants  1975),  this would  the  the  not  and  children  be  to  the had  before  population  with  JRA.  pain a  of  British  Screening and  obtained  agency,  those  access"  charge  University  Science  another  (1970  Gatekeepers  clinician of  population  researcher  study  children  as  the  i n  to  are  grant  those  addition  Becker  to  words,  i t  to  power  w i l l  process,  study  31),  with  were  the  p.  Committee,  Program  c r i t e r i a .  from  of  for  i n  1975,  other  Behavioral  Pediatric  progress  In  obtained  research  according  the  Personnel  Research  the  was  personnel,  Taylor,  contact  approval  sample  gatekeepers  have  Taylor,  Columbia's  i n  Gatekeepers,  any  Agency  this  agency  permission  i n i t i a t i n g  the  Early  population.  obtain  which  that  Bodgan  individuals study  by  described.  became  of  Process  the prior  social who  met  study  Director to  this  with  who  had  of  to  the  the  contacting  worker  d e c i s i o n was  children  Committee,  the  discuss  study's  children made  was  that  participated  in  23  in  that  nurse  study.  clinician  who  had been  two  years. As  made  diagnosed  i n i t i a l  verbal  phone  their  parents  phone  calls,  interested.  When  as  researcher  letter  their  sent  parents' the  were n o t again.  comments  made  their  method  time  B).  explained  of  data  committment, permission  received the  phoned  understanding responses  i tevident children  This  participation.  parents  the researcher  and c h i l d r e n ' s  parents,  letter  and requested  voluntary after  from  the researcher;  involved,  one week  with  they  (Appendix  of the study,  and c h i l d r e n ' s  letter  obtained  an i n t r o d u c t o r y  introduced  children's  Parents'  them.  clinician's  not contacted  was  of the children;  letter/consent, parents'  them  procedures  Approximately  to contact  to her that  and p a r e n t a l consent  expectations for  permission  and purpose  collection,  to  and t o o b t a i n  the nurse  were  clinician  the parents study  of  Gatekeepers  and consent  nature  JRA f o r a minimum  i n this  parents  and  informants  the nurse  with  indicating  These  A)  the agency,  d i d not return  verbal  (Appendix  as having  contact  worker  potential  f o r the researcher  thus  Parents  the social  twelve  interest  permission  Three  the  selected  r e q u i r e d by  ascertain  the  Subsequently,  that  to ascertain of the  study.  varied. they  and had spent  the  The  had  shared  time  24  discussing about the  the study.  their  children's  children  couple  opportunity  to  topic.  affected f i r s t  concern,  researcher of  answers. drawing to  Because  delete  regarded to who  interested  pain,  their  compromise were  affected  by  view  about  Some  decided parents  willingness  children.  were  agreed  A l l parents to  their  t h e phone made  f o r consent  interviews.  I n i t i a l l y ,  informants  confirmed  study.  During  of  aged  own  the researcher  this  Characteristics  informants,  to the  wrong  anxious  the researcher  arrangements  the f i r s t  or  their  as t h e  children's  were  what  t o draw  that,  right  of their  participation.  nine  their  as t h e r e s e a r c h e r ' s  and t h e f i r s t  Following  had  from  on b e h a l f  conversations,  no  a  In response  i n their were  A  n o t know  how  reassured  joints,  decision  would  A).  the children  contacted  children's  signing  there  the drawing this  were  about  expressed  n o t know  that  t o be a n  to talk  (a) they  (see Appendix  enthusiastic  but stressed  study  parents  would  parents  was  a r t h r i t i c  that  (b) they  joints  were  to participate.  this  children  Several  concerns  say and/or  decided  perceived  f o r their  children's  parents  participation,  themselves  of parents  d i f f i c u l t  Most  Informants were  interviews with  eight,  JRA, they  i t was  interviewed. the  apparent  d i d not have  youngest that  current  while JRA  they  25  experience. four  years;  mother,  As  other  been  would  remember  Therefore,  be  they  additional  not  eight  the  additional  informants  final  who  ranged  (average  12.5  Vancouver; within and 1  a  sample  the  150  3  one  had  JRA  and  for  2  to  informant  and  no  (average years  and  between  7  and  11  boys.  Of  the  JRA  or  fewer  for  informants, joints),  two  four  five  and  for  one  had had  i n  communities A l l  except  spoke  one  respect  had  to  joints  The  informants  years).  three girls  had  five  siblings.  with  5.9  and  years  resided  specific  years  joints),  13.33  disability.  boys,  more  had  number  4  or  to  A l l informants  and  (five  10.75  Vancouver.  2  were  include  girls  of  between  (4  to  radius  was  Since  informants  smaller  onset  10  study.  i n  of  did  pain.  five  informant  of  one  and  this  old  of  varied  10  JRA  adjusted  a r t h r i t i s  degree  for  resided  English.  duration,  involved,  One  her  thirteen.  from  kilometer  Informants' onset,  age  others  siblings;  year was  to  for  informants  have  from  consisted  years).  understood to  aged  two  a r t h r i t i c  twelve  criterion  i n  to  eliminated to  remission  remission  these  like  in  according  i n  remember  available,  boys  age  been  and  expected,  were  The  free  i t was  did  had  informant,  pain  what  specifically  no  informant  the  had  year. not  One  girls and  had  Age  at  and  two  three  pauciarticular  polyarticular systemic  JRA.  JRA Five  26  informants  had  no  informants  had  visible  informants, JRA in  for the  1  aged  to  2  final  another  contributed  to  parents  obtained  consent the  was by  now An  which be  Agency's  the  (Appendix and  parents  Research  of  the  data  two  signs  were  of  included  provided which  obtained.  from  the  Committee,  data  and  collection.  researcher and  to  decide  the  of  (Appendix to  were  A)  parents  the  the  The  protected  study,  the  study  whether  verbally children  and  method  to  parental  of  children  participate  to  data  risk/benefits. their  explained  stated  committment,  the  with  prior  and  e x p l i c i t l y  i n v o l v e d , time  children,  discussed  2.  parent(s)  sent  purpose  them  The  the  to  remission,  children's rights  B)  allowed  3.  of  before  procedures  expectations  written  they  experience,  introductory letter  nature  The  JRA  no  five  addressed.  collection,  The  had  accounts  previously stated, approval the  1.  had  their  richness  University,  w i l l  According  Nevertheless,  because  the  the  they  whereas  Considerations  As  manner  years,  years.  of  d i s a b i l i t i e s ,  d i s a b i l i t i e s .  12.5  sample  facet  Ethical  visible  the  or  study  obtaining  c h i l d r e n ' s consent  simplified  version  of  the  (Appendix parental  C)  was  consent.  not. to  their  consents. a The  and  the  27  children's children, the  consent, and  children  could  and  request  tape  4.  Parents  because the  5.  Parents  provided 6.  The  with  assured  asked  a  would  of  of  coding  not  names.  the  7.  Access  to  her  thesis  a d v i s o r s , and  8.  Consents  9.  Scholarly writing,  Data  w i l l  not  the  involved  to  tapes  a  children  were  consents. kept  transcribed  to  known  the  data  only  to  researcher,  typist.  were which  identify  answer  study.  codes were  restricted  included.  kept  locked.  will  result  children  or  and  analysis  were  two  processes  from  parents  this by  name.  Collection Data  collection  concurrently. until sake  was  and  A  the i n t e r v i e w i f  and  signed  tapes  These  researcher.  study,  from  that  time.  reluctant  father)  their  the  tapes  was  the  answer  also  risk  were  to  any  was  to  stated  p a r e n t s / c h i l d r e n were  by  and  no  at  terminate  tired,  1  refuse  (talks)  that  read  clearly  talks  to withdraw  copy  identities  numbers,  the  interviews  (9 m o t h e r s ,  confidential by  stop  appeared  or  consent  questions,  researcher  children  questions,  ask  could  were  the  the researcher  the parental  questions, to  which  data of  f i r s t .  These  collection  clarity,  data  was  were  completed.  collection  conducted  will  interwoven  However, be  f o r the  described  28  Data  were  collected  open-ended  interviews  five  period  month  ranged  in  length  frequently, evening  or  in  (school,  work  required  for  from  During  consents  to  series  children's  60  1987).  conducted  and  of  the  of  during  Interviews  the  family  early  committments  the  researcher  travel. Environment  period  time,  were  the  preceded  study  signed.  was  each  f i r s t  further  Parents  (10  explained  mothers  and  and  pets  the  researcher.  informal,  relaxed,  but  professional  atmosphere  the  acquainted.  Since  in  they  a  study,  background In  answer  tried  to  experts,  to  and  the  to This  children All  offered  these asked  about the  convey  important 1984a).  and  researcher  therefore  they  that to  that  they this  accomplished this  informal  interviews  were  audiotaped.  to  assist  in  s e t t i n g up  the  to  offer.  researcher were  (Ross  talking  during  had  the  something  study  by  researcher's  the  they  had  participated  the  themselves  questions,  An  became  never  about  children  contribute was  had  questions  what  the  children  children  children's to  and  and  5  children  as  met  interview.  fathers),  prevailed,  a  Most  in  time  19  homes,  minutes.  because  schedules)  a  August,  were  weekends  informal this  -  30  Setting/Interview An  the  (April  interviews on  through  &  Ross,  directly  to  period. Several cassette  children tape  29  recorder  and  appeared  i n t i m i d a t e d by  either In  PZM  owned  fact,  a  tape  i n i t i a l l y ,  knowledgeable equipment. another  thus  gain  Most  their  to  an  which  or  had  a  of  children  couple  researcher  working  were  the  they  school.  more  use  of  this  confidence  to  function effectively  appeared  parents' not  the  children  knowledge  might  what  children be  Therefore,  addressed  i n  A),  this  issue  anticipated  parents  and/or  parents  (5  the  managed  by  children  mothers, mothers,  Most  parents  gave  their  1  the  were  to  and i n  the  reserved.  "my the  some  once  son  researcher extent,  the  taped  openness.  and  now at  The  be  chose  fathers) did  a  to  had  (Appendix This  decision  result, stay,  6  whereas  not.  participants,  non-verbal  extent  described.  occur.  whatever As  to  interviews  did  made.  silent  i s  o b j e c t i v e was  w i l l  honoring had  children  but  introductory letter  father) 4  to  presence  been  as  say,"  and,  met  not  was  to  conducive  parents'  was  such  apprehensive  o b j e c t i v e was the  comfortable,  comments,  know  the  began.  Although  they  i n  their  that  (5  in  one  share  this  parents  used  as  to  atmosphere  situation  equipment  opportunity  parents  create  recording  children  provided  might  interviews  the  presence.  from  anticipated  of  recorder  the  children  he  the  None  together  the  researcher's  afraid  than  This  with  Judging  microphone.  support.  i n  that On  9  30  occasion, what  however,  their  managed  c h i l d r e n were  this  children  type  by  children, were  of  clarify  saying.  dialogue  redirecting  thus,  would  The  or  researcher  between  parents  the conversation  reassuring  them  that  contradict  to  and  the  their  perspectives  sought. The  parents  researcher's were  ways.  One  quiet  others  family  i n their  suggested  that  they left  were  responsibilities,  siblings  and  family  to ensure  parents  pets  room  and  to  from  the  different  the interview  i n the next  the l i v i n g  that  children i n  bedroom  Several  was  children's  their  i n the child's  that  impression  supported  environment.  children S t i l l  but  mother  conducted  overall  interested  participation  a  parents  be  privacy  reassured  room  or  their  outside.  because of  restrict  and  other  younger  i n t e r r u p t i n g the  interviews. The  Open-Ended  Cannell  &  conversation the  purpose  children's  with was  this  started,  a  l i f e .  a  (1968) describe purpose"  to c o l l e c t  experience  initiate  questions  Kahn  Interview  few  of  warm-up  pertained  A l linformants  to  In this  d e s c r i p t i v e data  once  arthritic the tape  questions favorite found  interview  (p. 526).  having  conversation  an  were  the To  recorder  used.  questions  "a  study  pain.  activities  these  on  as  was  These and  family  easy  to  31  answer.  The  i n s t i l l  confidence  answer  of these  (b) to obtain  of s i b l i n g s ,  to check  questions  i n the informants  questions,  (number/age (c)  purposes  the quality  had been  previously  questions,  the tape  would  This  brief  replaying  adverse  affects  familiar  with  provided  a  was  few moments  r e s t a r t e d and  that,  stopped  and  because  voices.  and  The these  replayed.  d i d n o t seem  ended  data  after  to  have  they  were  However, i t  of r e l a x a t i o n before  t h e open  could  recording.  the informants  recorded  they  of informants),  told  of the tape on  their  be  (a) to  demographic  of t h e tape  informants  any  that  some  age/grade  were  indepth  the  tape  interviews  began. Construction The  data)  dynamic  with  researcher's was  informants a  of a r t h r i t i c  interaction  (1985),  provided  taking  as  topic"  by  (p.66). What  informants'  the direction  exploring i n  pain  from  process  active by  First  the  involved  roles. Field  the interviews  question: The  accounts  the researcher  suggested  "to guide  broad  This  between  both  role,  on  arthritis?  accomplished  perspectives.  informants,  Accounts  of informants'  was  the experience  informants'  with  Informants'  construction  (descriptive depth  Of  &  and The Morse  and keep interviews  i s i t like responses  a  the began  f o r you to  to this  f o r the interview.  have  question  Other  32  questions  evolved  constructing general  the  and  experience  with  responses  were  researcher  stories  became  explored  to unfold  more  relaxed  encouragement  (Ummmm, t e l l  me  a  richer  used.  several  allowed As  confident  listening,  questions,  using  naturally.  specifically  right  the  probing,  interviewing,  the  were  techniques  and  of  previous  a r t h r i t i s  These  of  the review  clarifying,  summarizing.  informants'  from  had  process  In addition,  the researcher's  c h i l d r e n who  and  interactive  evolved  reflecting,  validating, the  which  from  children's  techniques:  the  children's accounts.  questions  literature  The  during  more,  the  with  giving  etc.),  quality  of  and  data  asking was  obtained. The  Second  Open-ended  Permission  to  return  obtained  f o l l o w i n g each  purposes  of  informants responses accounts explore  the were  from and  informants  of  across  second  the f i r s t  interviews  the f i r s t  were  Although  f o r a  (a) to c l a r i f y  interview  the  validate  and  until  (b) to  similar  The  same  interviews, within  stories  was  interviews.  with  and  the accounts,  the unfolding  responses  nine  second  Interview  informants' the further or  same  heard. the o r i g i n a l  twice,  informants.  second One  plan  was  interviews  informant  was  to  interview  ten  were  conducted  not  interviewed  with a  33  second child  time had  because  w i l l i n g l y  inconvenient  time  Because obtaining were The  of  not  the  second  the  between  seem  to  as  they  from  have  about  forgot second  None  of  consistent,  interviews minutes. form  of  audiotape Data  field  or  i n  to  the  length each  notes a  on  very  f i r s t  months  because however,  informants'  The  between  asked  them. 15  interview,  to  change  (accounts) that  were  these  Second  minutes  to  additional  recorded  did  only  researcher for  finished.  i n t e r v i e w s and  stories  from  were  interviews  interval,  the  informants  reality  i n  two  experiences  their  suggesting  Following  effect  own  Rather  ranged  a  and  i n t e r v i e w s among  variable  about  the  represented  to  interviews.  interviews.  accounts.  second  week  The  delay  i n t e r v i e w s were  and  one  any  their  the  f i r s t  f i r s t  were  accounts  i n  informants,  differences  their  at  additional  varied  think  participate  a  before  parents  them.  committments.  accounts not  for  to  the  and  interval  did  consented  felt  constraints  started  other  researcher  time  informants of  the  either  45 data  on  notebook.  Analysis As  previously  collection  began  were  interwoven  Then  the  final  mentioned  data  simultaneously. until  phase  data of  analysis  and  data  The  two  processes  collection  was  completed.  was  completed  data  analysis  i n  34  over  a  period  were  analyzed  of  w i l l  I n i t i a l The the  gain  arthritic  a  Then  the  the  within  to  of  each  into  The  researcher  her  thesis  The  the  themes  organized  the  taped  across  data  children  computer  tape  looked  was was  described was  discs.  subsequently,  While while  reading  for recurring  transcripts. were  noted  transcript.  theme  collection  interview  researcher  were  envelopes  phase  transcripts  them.  when  with  color  A l l pieces  identified, according  these  by  cut,  to  codes  of  data  sorted,  each  and  theme.  r e c u r r i n g themes  with  Phase  the  each  data  advisors.  collection  theme  which  a n a l y s i s commenced  how  and,  discussed  final  each  of each  each  manilla  Final  by  i n t e r v i e w , each  r e c u r r i n g themes  put  data  data  onto  the  and  margin  related  of  taped  tapes  transcripts,  These  each  verbatim  transcribing  themes  described.  ended  sense  pain.  transcribed  in  phase  After  to  process  be  i n t e r v i e w and  completed.  the  now  The  Phase  i n i t i a l  f i r s t  played  months.  was  to  a n a l y s i s commenced The  listening  identified,  describe  These  data  completed.  while  already to  of  the  themes  provide  an  to the  elements  and  their  analytical  after  researcher the  reread  tapes.  researcher that  were  elements  Using analyzed a  part  of  were  framework.  That i s ,  35  they and  were  organized  together  a r t h r i t i c thesis  to  described  pain.  This  show the  their  interrelationships  experience  framework  was  of  having  discussed  advisors.  In  the  process  of  writing  an  data  Discussing  the  themes  and  advisors  helped  Throughout  the  process  of  writing  The  process  of  data  thinking. analysis  and  continued.  continued  until  children's  the  their to  analysis  elements  clarify  reseacher's  descriptions provided  experience  IV,  and  the  thesis  f o r chapter  outline  organizing  their  with  with  arthritic  on  methodology  continued.  with  the  researcher's chapter  vivid  IV,  analysis  a n a l y s i s and a  friends  the  picture  of  pain.  Summary This used  to  rights, chapter,  chapter  select collect the  presented.  informants, and  analyze  informants'  described  protect the  the  process  the c h i l d r e n ' s  data.  In  the  (children) accounts  next w i l l  be  36  CHAPTER  IV:  THE  CHILDREN'S  ACCOUNTS  the children's  accounts  Introduction In  this  experience Although her/his  with each  l i f e  be  find  i t unusual  this  topic.  is  this the  with  Can to  began  pain.  might  of  i t i s the  be  that  stated,  that with  they this  they  asked  to  d i d not discuss  d i d n o t want  should  have  general  arthritis?  a l l children  a l l children  Thus,  the researcher  pain,  question:  you t e l l have  me  brought  up  C:  Well,  i t doesn't  right  now.  hurt  responses  i t i s like  f o r you  arthritis?  Sometimes,  i t i s  painful.  really  But a  i n the showed  year  bother  me  much  ago, i t r e a l l y  used  morning. that  a l l  In responding  spontaneously  what  to  What  pain.  C:  to Their  they  f o r you to have  question,  R:  account  otherwise  revealed  a r t h r i t i c  But because  of  their  presented.  pain,  unless  accounts  that  interviews  topic  be  unique  arthritic  to the children  i t like  an  experience,  children's  familiar  f i r s t  w i l l  of  presented.  were  suggest  pain  provided with  shared  w i l l The  a r t h r i t i c  child  daily  children's that  chapter,  a l l children  had  or d i d  to  37  have  intermittent pain  a r t h r i t i s . with  Furthermore,  arthritis  and  interchangeably. Therefore, children to  the talk  these  talked  This  associated  must  with  c h i l d r e n equated  about  notion  reader about  they  pain  w i l l  be  assume  a r t h r i t i s ,  and  pain  arthritis  explained  that  they  when  are  later.  the  also  referring  pain. When  the  children  they  discussed  past  experience  compared  which The  pain  onset  onset  their  the  of  pain  C:  It now I  and was  past  (at  (at  of  pain,  free just  to  to  could  do  2  showed  to  4  11  years)  they be  I  things.  current  the  as  time,  that  standard  onset  children  did  recalled  the  i t i s  didn't  have  that  any  with  late  change.  they  active. like  of  not  children with  explained  they  experience. the  5  and  past  the  pain  the  5  pain,  their  years)  pain,  normal,  [remission].  viewed  current  of  of  with  Although  before 7  Much  was  their  a r t h r i t i c  context  experience  lives.  lives  onset  the  accounts  arthritis  arthritis  Before  the  assessed  their  in  about  a r t h r i t i s .  current  children's  remember  free  they  talked  pain  with  Thus,  changed  early  this  their  experience. by  that  pain.  were  38  C: One  I was  child  change  pretty  who  was  i n activity  C:  that's  solo,  my  this  Description In  unpredictable  this  a r t h r i t i c  The non more  Arthritic  section,  pain  intensity,  influence  w i l l  w i l l  children  a r t h r i t i c  be  this  they  I  because I  do  are pain  significant Four  affect  the limited to  be  functioned.  themes  of a r t h r i t i c on  pain,  daily  a r t h r i t i c  event, make  up  making  lives,  and  pain.  Pain that  described. and  addressed  kinds  distinguish  These  duration.  Arthritic  other  change,  perceived  they  distinguished  pain. than  be  whenever  i n pain,  the factors  frequency,  pain  intense  pain,  the things  any more  hurts  lives.  description  Of  skate  they  i n how  their  of a r t h r i t i c with  when  i s about  changed  her  practicing f o r  do  significant  that  factor  explained  active.  Therefore,  chapter:  coping  to  just  chapter  that  sense  knees....It  this  This pain,  can't  expressed  a l o t .  myself....It  I can't  any more...I  result  mediating  I was  I hurt  cause  really  a c t i v i t i e s .  the  when  changed  of  sore  further  skating.  something a  skater  I am  way.  my  of  children  this like  like  As  former  I really  really  in  a  a c t i v e . . . . Now  factors Factors  i n the next between  pain  was  of pain.  relate that  section.  a r t h r i t i c  and  perceived  to  For  example,  be  39  one  child  pinch," as  described  whereas  "a punch  emphasized that  this  or a  child  kick."  of other  kinds  R:  What  are other  C:  One  of  i s my  referred  kinds  a  R:  What  i s different  C:  I t doesn't hurt  several varied C:  different  between  The  really R:  Oh,  C:  I  I  hurting?  hurt.  The  as much.  joints.  up  here  heavy. see.  One  to  one i s  a r t h r i t i s  like  do  feelings,  like  my  difference i n pain;  intensity explained.  to upper shoulders i n my  body)  I  and  knees i s  i t i s worse!  you think  because  that?  they  have  different  shoulders  have  different  feelings  than  my  and  have  t o have  I  child  that's  I t i s like  Why  t o move  my  a  pain  (pointing  that  shoulders,  other  a r t h r i t i c  that  imagine  have  My  and non  but the pain  they  compared  about i t ?  i s lighter,  wrists,  of  stressed  their  think  pain  hurt.  a r t h r i t i c  pain  pain  further  children perceive  children also between  "a  painful.  d i d several  intensity  as  pain.  just  only  specimens  to a r t h r i t i c  of a r t h r i t i c  a r t h r i t i s  i s very  of blood  Another child  the intensity  hurt Not  the taking  knees.  My  knees  the cracks  them  up  a n d down  just  have  t o move  get  s t i f f  out and  but with them  a  I  my l i t t l e  40  and  R:  the cracks  come  they  get really  them  so  they  out....My  s t i f f  s o my  get better  I understand  better  mum  then  now.  hips  sometimes  stretches  too.  What  about  your  neck? C:  That  never  bothers  know  I have  me.  a r t h r i t i s  I don't i n my  Not  only  d i d pain  intensity  vary  the  children said  intensity  varied  time.  The One  type  children, children Others  acute  this  analogies  stung  from  a  such  " I ti s just  described  two  as  pain  but  joints  over  types. According  tos i x  warning.  Several  "sharp""shooting."  "shocks,"  i n my  bang!  this  as  joints,  within  and w i t h o u t  pain  bee  neck.  between  and b r i e f .  suddenly  described  brief.  children  was  i t came  used  "getting was  children identified  hardly  "a s p e a r , "  knee."  Then  off!  The  duration  Then  i n graphic  and  bang!"  detail.  S i x  For  example: C:  I f i t i s hurting  really  it  when  [ankle], that  shooting my  C:  ankle...then  A l l of a into it  my  w i l l  sudden knees, stop,  a  l o t and  I usually  sort  I  step  get  of shoots  on  that  through  i t i s just  sore.  i t i s like  something  stabs  pain,  then  just and  like  I w i l l  a  and  get i t again  i n a  41  couple.... Like often,  C:  there  would  when  I am  bending  just  locks  seconds  getting these  by  a  sudden  duration. active type  The  by  pain.  C:  C:  this  either  word  type  descriptors  brief  than  inactivity  or  a  l o t of  go  s t i f f .  and  long  such  either  joints  my  a  "bug" to d e s c r i b e  frequently of  was  to  then  pain.  characterized  the children  frequently  i n the joints  After  a  like  total  was  and  when  i s  just  type  I get sore move  hurts  i n h i s voice] f o r  cut off,  but less  and  periods  lately, i t  really  intensity,  the other  I t occurred  following  just  Sometimes  the  were other  the children.  contrast,  " s t i f f , "  pain.  i t stops!...It  finger  I t occurred  or inactive,  knee  really,  then  high  c h i l d r e n used  "sore,"  my  i l l u s t r a t e ,  onset,  described In  and  geti t  s t i f f ,  shooting  the intensity  your  quotes  get really  be  i n and  [emphasizes  but I don't  happened.  i t would  then  5  spear,  but i t has  Sometimes  As  a  as  ache.  "hurts,"  this  during  type  of  or  activity. and  i t i s  i t really  jumping,  term  running,  hard  hurts.  I get  sore,  42  This  type  change  began  over  C:  as  gradual  . . . i t  be  started  really  lower  The  to get gradually  intensity C:  and  varies Pins  over  and joint  ...the  and  sort  of  C:  characterized a  longer  by  a  gradual  duration.  of unique  word  throbbing, like  i n my  i t becomes like  descriptors,  that  pain  when  your  a  can  feel  heart.  ankle  like  you  sort  of  stomach  you a r e hungry  slows ache...  and  your  growls.  about  i n the  would  time.  beating  to  pain  children said was  to  l i t t l e  ankles  B u b b l i n g ... b o i l i n g ... k i n d  Arthritic  a  d e s c r i p t i o n s show  pounding  down  is  it  and  needles,  weird...The  The  was  graphic  stomach  C:  type  intensity  the  C:  s k a t i n g , my  children's choices  analogies,  seemed  sore.  indicated, this  onset,  that  time.  sorer... after  As  soreness  pressure  of  comes  up  jingling, like  my  of  skin  explode. was  i t was  i n t e r m i t t e n t and less  frequent  unpredictable.  currently  past.  I t [pain]  kind  comes  whenever  i t wants t o .  than  43  C:  It  used  hurt  time  ago  hurt  a l l the  any  if  I  hurt it  when  a l l the  I  f i r s t  time  more...Like  cause  As  to  whenever just  starts  to  indicated, pain  more  frequent  from  their  and  do  now.  when  doesn't hurt  Well,  I  I  or  anything.  But  It  doesn't  exercises  do  long  say  now  anything  It  start  just to  doesn't  do  stuff,  hurt.  was  r e c u r r i n g , but  longer  comments,  i t .  It  right  don't  forever.  got  now.  I  time...a  lasting  duration  i n  was  perceived  the  also  past.  to  be  Judging  variable  and  unpredictable. C:  Sometimes  C:  it  just  goes  away.  It  goes  away  in  sometimes While was  i t lasts  their  a  the  when  pain  therefore,  what  factors  In as  summary,  feelings located  intensity. a r t h r i t i c  would  be  the  time  minute...a  indicated  half  was  sometimes  an  hour  or  probably  influenced  discussed  i n  occur  their  perceived  to  be  and  changed  the  next  joints  more  pain  from  and  children described inside  arthritic  knew  D i s t i n g u i s h i n g f a c t o r s were pain  and  that  children also  experience  factors will  long  day.  comments  unpredictable,  These  a  a  pain.  section.  a r t h r i t i c that as  pain  varied  follows:  severe  than  in  44  other  kinds  between  joints  children pain. and  of pain; and  Arthritic  experience  within  joints  two  types,  an  pain  next  that  was  But  also  event,  pain,  will  Making  Sense  of A r t h r i t i c  The  chidren  the context  event,  from  present. this  about  their  event  their  by  to  lives  several  onset, was  pain  started C:  to  acute  from pain.  In this  experience  unpredictable  pain  constructed  episode  their  This and  F o r no  about  own  section i s their  pain. the onset  of pain  f o r a l l c h i l d r e n because their  that  a  According  the circumstances  something  apparent  was  i t changed  functioning.  remembered  them  to the  f o r information  the pain.  c h i l d r e n who  reason,  unexplainable their  joints  hurt.  I woke to  an  they  mentioned,  alerted  an  as i n t e r m i t t e n t  pain  time  limiting  happening.  as  the f i r s t  of a r t h r i t i c  significant  entire  f o r information  previously  and  i n t e r p r e t a t i o n of  over  to explain  interpretation As  event,  search  ache  The  Pain  their  of  In searching  explanations  time.  influenced  of a r t h r i t i s  the onset  mysterious  over  presented.  viewed  within  varied  t h e c h i l d r e n knew  the children be  pain  described  certain factors  section,  of  also  identified  unpredictable.  the  the intensity  up  i n the morning.  get something,  I  f e l l  When under  I bent my  down  chair.  I  at  45  had  to  knee  hold  started  down. Not  only  were  and  of  I  my  chair  hurting  told  the  unexplainable signs  onto  my  mum  I  the  next  because  they  had  to  to  take  My  bend  afternoon.  by  they  the  had  convince  their  down.  couldn't  children mystified but  physicians  bend  and  pain,  pain,  to  no  both  visible  their  complaints  parents  of  pain  pain,  they  seriously. C:  When  first  started  [several  doctors]  pains."  The  I  C:  I  did  It  not  was in  get  tired.  start  or  the  that  know  had  would  they  sorer The  mum what  understand  so  my  mum  doctor  was  i t meant...I cause  I  took  was  I  like  would  in  and  my  but  pains" I  said  gradually me had  to  a  the  a r t h r i t i s  she  didn't only  be  would  "growing  get  part.  would  legs  knee,  knew  stunned,  I  come  my to  5,  knees  were  bashed  i t started  doctor. my  I  worst  on.  My  and  "growing  the  going  grade  ankles  think  I  And  l i t t l e  so  My  was  in  as  was  playing.  hurting.  would  no.  what  snow  i t off  knowing  wintertime  out  mom  put  not  know  having  didn't really  ten.  46  Although the  the  doctors  diagnosis not  and  the  on  ice  the  have  me?  get  i t and  get  i t , but  I  children that to  get  cause  parents, because  had  they  many  to  the i t  did  questions.  questioned  why  them. a r t h r i t i s  I  have  on  Because  of  functioning, information  always I  the  i t i s  that  information  to  just  known ice  would  a  by  l o t  and  they  wonder  why  falling of  people  didn't  commercials for  i t and  for  make  on I'd  much  why  to  would  Well,  me,  out  their  their  why  couldn't  loss  by pain.  said  I  about  in  seeking  commercials  acquire  found  had  brother  sense  children to  know  to  I  else?  television  f i r s t  didn't  happen  to  my  strange.  explain  Several  I  just  concern  commercials  When  to  maybe  someone  tried  were  professionals.  to  their  they  used  thought  i t have  happen  I  children  the  their  something  a r t h r i t i s .  would  C:  to  fallen  Why  television  to  The  I  meant  extent  happened could  it  a r t h r i t i s  mentioned  get  C:  some  pain.  children  who  of  nothing  [arthritis] C:  of  to  meant  explain  Several pain  diagnosis  they  Two and  sources health  watched  information. had  i t ,  i t .  I  had  seen  T.V.  advertising  for  creams  keep  on  i t and  watching  I  47  thought  Although the pain and  kind  of  television  commercials  their  into  a  scared.  provided  of understanding  intensified  I t i s pretty to  R:  think  information,  coupled  reactions  someone  my  with  of fear,  their  shock,  year  have  a r t h r i t i s  i s  only  9,  [the  shock]  want  to  10  would  learned  get i t ,not  me  That's  I was  years  t h e same  what  I  shocked!  o l d .  but there  children  thing.  thought  Me!  I  am  I got over i t are times  seek  I  the children  what  was  about  happening  information  sought  particularly  about  told  your  i t . . . . I  only...  but a l lc h i l d r e n  The  scary  s t i l l  skate.  d i d some  the  of  o l d has  told  people.  I got i t .  explain  i s sort  age.  professionals,  children  13  people  t i l l  television,  C:  a  children  For older  only  health  that older  Other  C:  sad....It  thought  That  not  t o go  and  lack  I was  have  sadness . C:  Not  I would  wheelchair  children's only  that  to their  information physicians.  a r t h r i t i s . arthritis  from  What  the  helped  joints,  to  from The  physicians explain  but i t s t i l l  d i d  pain.  doctors joint  have thing  told has  me  that  separated  i t i s like  when  and i t i s not  48  totally comes In  tried  t o make  absence  That  I don't  R:  Ummmm  C:  Sometimes,  joint  pain  of pain  that  pain  meant t h e  meant t h e  explained  attention  I think  time,t h e  by equating  o f pain  One c h i l d  thing.  over  presence  absence  p a y much  of arthritis  of pain  i s , the  of a r t h r i t i s .  C:  about  sense  of a r t h r i t i s ;  fluid  i n that  information  a r t h r i t i s .  presence  andthe  i n andf i l l s  seeking  children with  locked  i t this way:  t o my  I don't  a r t h r i t i s .  even  have  a r t h r i t i s . R:  Tell  me m o r e  C:  What  do you  R:  I want  C:  like  you  i s not  C:  Y o u know  equating  i t with  explain pain,  don't  i s  you  children  when have tried  a r t h r i t i s ,  don't  have  you  do have  t o make this  children constructed  Their  pain  arthritis  when  hurting  I n the  sense  o f pain by  diagnostic  the  past  have  a r t h r i t i s .  pain.  children  you  like?  the  explanations.  think  hurting.  Ummmmm... B u t  using  you  I t i s just  R:  The  when that  the  by  t o know  t o know?  what  Although  about  want  that.  a r t h r i t i s ,  it  not  about  absence  label  did  of information t h e i r own  interpretation i s as follows.  tried  t o make  as a standard  sense  of current  by which  they  pain  49  evaluated  their  current  viewed  t o be more  severe  than  view  recent  frequent,  they  whether  currently  they  pain  experience.  were  experienced.  Furthermore,  of pain  made  pain  lasting,  was  and  Such  explaining pain  episodes.  unpredictability  longer  Past  more  was  a t onset  their  or  more  the  making  sense  o f i t more  d i f f i c u l t . The pain. pain The  children  Rather by  linking  they  forgot  C:  were  that  were  being I  intermittent  of  pain.  medications,  a c t i v i t y .  i s , pain  occurred  o r when  their  adjusted.  forget  Because  long  I get  sore.  tried  t o make  what  of  f o r  cessation of  medications  me.  child  That  themselves  influenced  and  that  pain.  to take  sense  cessation  explained  Sometimes  explaining without  factors  influenced  medications  Another  t o make  i t to factors  children  medications  C:  tried  t o blame  "flare-ups," i n a c t i v i t y ,  Four  when  they  attibuting  disease  d i d n o t seem  my  p i l l s  i f I forget  sense  she b e l i e v e d  a n d my  mom  reminds  and I put i t o f ft o o  of this  happened  pain  to her  by  body  medications. My  body  and [The  was  then  a l l of a  body  lousy.  adjusting  said]  I was  to a l l this  sudden,  where  drowsy,  no  medication  medications.  d i d i t go?...I tired,  and  felt  dizzy.  50  All in  c h i l d r e n a l s o explained  that pain had occurred  the past when they had " f l a r e - u p s " of a r t h r i t i s .  They d e s c r i b e d t h i s  pain as i n t e n s e ,  continuous,  u n r e l e n t i n g and r e s t r i c t i v e . C:  Last summer I was good. and walked a l l over  I was r e a l l y  the p l a c e .  loose  But when my  f l a r e - u p came, 1 couldn't walk as f a r as I could, e v e r y t h i n g was r e a l l y  sore and i t  didn't want to go away. S i m i l a r l y , the c h i l d r e n a t t r i b u t e d past pain to i n a c t i v i t y . Most s i g n i f i c a n t l y , experience  that prolonged  i n t e n s i t y of p a i n . attributed  the c h i l d r e n knew by  inactivity  The most severe  to i n a c t i v i t y  occurred  changed the pain/stiffness  upon r i s i n g which the  c h i l d r e n commonly r e f e r r e d to as morning C u r r e n t l y , two c h i l d r e n experienced children  i t ; but a l l  "remembered what i t was l i k e " because i t meant  limitations i n daily  home r o u t i n e s as w e l l as i n  p h y s i c a l a c t i v i t i e s with peers. C:  stiffness.  Well, i t doesn't r e a l l y r i g h t now.  bother  explained.  me much  But a year ago, i t r e a l l y  to hurt i n the morning. and  One c h i l d  used  I couldn't get up  I couldn't do any s p o r t s .  R:  Can you t e l l me what that was  C:  Well, i t r e a l l y  hurt  like?  ( f a c e grimace - hands  on knees)...[now] my knees aren't s t i f f i n  51  the Two  morning  and they  children explained R:  Do  C:  No,  C:  y o u have  cause  have  to get loose  When  you f i r s t about  only  what  i s hard  you were Then  past  that  to walk  cause  up.  I  sometimes.  because  you  sleeping.  When  to  i ti s like.  "flare-ups,"  and c u r r e n t  explained  sometimes  you start  d i d the children attribute  attributed  but  f o r me  get up, i thurts  g e t up, i th u r t s .  and disease  C:  which  time.  occurred.  i n bed, crunched  i t cause  inactivity  were  sleep,  nice  and comfey  a l l the  stiffness  I just  I  am  hurt  night?  I get up, i t i s sore  remember  they  at  when  you  children  morning  any pain  I don't  forgot  Not  why  don't  pain  pain  past  pain  the children  to activity.  occurred  to  also  Eight  currently  when  active. I didn't start and  have  running  I would  C:  I t just  C:  When  always  at a l l ,then  f o rat least  start  hurts  I am  any pain  to feel  whenever  10 t o 20  then.  would  minutes  pain.  I do  active, i tstarts  happens  I  something  active.  hurting.  I t  52  According  to  movement,  but  such  as  the  most  walking,  Furthermore, changed words, more  children,"active"  the  the the  C:  running,  or  children  explained  children  If  their I  i t ,  C:  frequently referred  intensity  intense  of  that the  i t w i l l  hurt  more...  started  variation  sore,  to  over  inside  their  C:  time  get  activity In  other  they  I  I  couldn't  and  a  were,  the  stand  between  would  certain  to  make  joints,  e x p l a i n i n g what  on  be  up.  to  tried  run  l i t t l e  ankles  pain  also  intensity  go  gradually  attributed  by  and  s k a t i n g , my  i t , they  in  games.  active  ankle  influenced  joint  activities  time.  more  sore  children  joints  the  to  that  over  a  really the  pain  knew  sorer...after  While  playing  any  pain.  have  . . . i t  denoted  was  factors  sense and  of  within  happening  joints.  ...they  have  shoulders  different  have  feelings,  different  like  feelings  my  than  my  knees.  C:  I  participated  ankle is  k i l l e d .  some  won't  in  kind  l e t  the  every  sport  Tremendous of  blockage,  pain  out  I  pain, I  until  could. like  guess  and  My  there i t  i t (pause)  when  53  it  C:  does,  [Pain or  C:  me  not walk  have  any  i t to external  joints  episode  that  and t r y i n g  t o make factors  sense and  about  would  event,  to the present  think that  t o make  of pain  change  by  disease  what  was  pain  happening  and  While  they  sense  of pain  using  didn't by  past  time,  they  always  as a  (c) attributing  disease  "flare-ups,"  imagining pain  what  their have  (a) equating  pain  was  and l i m i t  of f i r s t  In trying  constructing  by  onset  a r t h r i t i c  time.  with  pain  over  from  pain  cause  bone  thinking  intermittent  by  I  r e d d o t i n them  summary, t h e c h i l d r e n viewed  unpredictable  pain  I walk,  limit  a c t i v i t i e s .  In  (b)  bones  fast.  when  a  your  more.  children tried  their  very  hurt  t o e a t my  but also  i s hitting  through  joints  trying  "flareups,"  an  my  k i l l s .  that  knees  is  attibuting  their  fluid  . . . w h e n my  these  inside  is]  i t i s going  that  Thus,  i t really  pain,  happening their  of  terms  they  tried  t o make  a r t h r i t i s ,  to evaluate  i t to cessation i n a c t i v i t y ,  to  sense  explanations.  i twith  standard  as  pain  t o make  h a d come  own  pain  of  current  medications,  and a c t i v i t y , inside  their  fuctioning.  For  and (d)  joints these  to  54 children meant pain  c u r r e n t l y , being  limitations. as  The  i t relates  to  " a c t i v e " meant  next the  section  pain;  i s  children's  about  pain arthritic  activities  with  peers . Affect  on  What pain  was  current  a  Pain  meant  free,  through  they  their  activity  their  chose  pain.  This  to  for  most  because in  of  exceed i s  children  activities  their about  with  for peers.  Sometimes,  when  limits  move  their  and  limitations  choices.  The  children  C:  I  like  set  my  enough  C:  I  Whether  or  their  own  teachers  not  so  about  refuse  to  they i t to  be  limits. to  don't  I  I  do  have  refuse  they  participated in  depended  upon  the  choices  too  l e t me  know,  babied,  know  not  much  about  stuff,  but  my  own  to  be  activities  they  made.  limits.  pushed. with  Pain  was  deterrent. C:  was  i t s meaning  limitations.  section  arthritis  peers  concern  limitations  c h i l d r e n knew  pain  and  Lives  a t t r i b u t e d to  them. The  Daily  I  can't  do  friends. can't If  I  sports. Whatever  play try  to  soccer do  I  can't  they with  do, them  something,  i t  play I  with  can't.  or  my I  baseball.  hurts.  a  55  Although their  pain  was  choices.  desire  a deterrent,  These  How or  C:  do  you decide  and  do  i t .  gym  because  they  and v o l l e y  when  Like  I hurt  c h i l d r e n knew  my  peers.  take  P.E.  frequently  mentioned.  free,  cause  do that  [ball].  and things  like  Day.  s o i f I r u n a t a l l my  influenced  experience  Gymnastics  children desired  soccer,  I can't  that  take  hurts.  from  pain.  like  wrists with  I w i l l t r y  I didn't  and Sport's  ankle,  experience  influenced  chose  o f my  running  always  i n d i c a t e d , past  pain  year,  participate i n sports  C:  These to  what  and b a l l were  their  choices.  sports games  the sports  were i n which  participate.  t h e c h i l d r e n made  choices.  Some  to p a r t i c i p a t e i n badminton, t a g ,  and sometimes,  within  their  you w i l l  ball.  I g e t banged  ankle  were  a s do  d i d stuff  hurts  Because o f ?  discus,  just  because  R:  children  last  volleyball  I can't  When  influenced  and t h e  I can do, then  But l i k e  basketball,  a l l  experience  whether  I f i t i s something  C:  factors  not?  basketball,  The  past  to participate i n activities  R:  As  were  other  their  i n trampoline.  limits.  These  activities  Some  children  modifications C:  involved  I like play  At  other  C:  stays  he  runs  times,  sports.  Some  the cooperation of their  baseball  a  l o to f times  and I have  at the base,  a  runner  peers  they f o r me.  I h i ti t [ b a l l ] ,  and  f o r me. the children  themselves  made t h e  modifications. Well, did  I can sort  i n cottage  basketball and  shoot  Throwing  and swing  go  quotes  peers  chose  I am  right  down.  and then  illustrate to modify  under  i t [ball]  the discus,  back  basketball  Yes, I can  and i t goes  t o bend  These  games.  cause  have  it  of join  t h e boy passes  just  C:  to modify  P.E. because  He  necessary  chose  join thenet  t o me  and I  i n [the basket].  the javelin...I I  them  cause  just  bring  forward  my  don't arms  and then l e t  i t works. how  the children  activities  and  their  so t h a t  they  could  their  limits  participate. Some  children  participating eventually C:  to test  i n activities  result  I have weeks  chose  that  they  knew  by  might  i n pain.  been  s k a t e b o a r d i n g f o r about  and i t j u s t  started  hurting  two  now.  I  57  R:  So  i t doesn't  C:  No, it  C:  I  just w i l l  time  i f I keep  doing  i t f o r a  dancing  dances  Although  every  eventually,  like  it  hurt  and  hurts  so I w i l l  just  and  see what  sometimes  the c h i l d r e n tried  possible,  much  probably  y o u do i t ?  get  go  to a l l the  happens.  Sometimes  i t doesn't  pain  time,  sore.  hurt.  to participate  of the time,  long  as much  limited  as  their  activities . C:  I can r u n , but after and  C:  I  I have  really  would had we  wanted  have  would  there...I  start  when  C:  C:  sore  the stage  but I  cause  we  out, the trampoline,  and  the apparatus  out.  I  really  t o go  out and  wanted cause  would  i t [ankle]  would  hurting. that  to participate  I t bugs like  out and p l a y ,  I couldn't  c h i l d r e n expressed unable  t o go  t o s i t on  have  play...But  i t get  stop.  a l l the ropes  sit  The  to  a while  me  they  I t i s really  sad and  as d i d t h e i r  because  the other  felt  kids  I can't  do  strange  peers. a  l o t of  things  do...  upsetting  because  I can't  do  a  58  lot  When  of  sports  C:  It  makes  the  children  me  participated in  to  exceed C:  C:  had  I  could.  ball.  I  would  be  knee  that  play  was  and  mentioned,  prolonged  pain  meant  I  was  at  I  was  dancing  a  C:  ankle  with  walk  Sometimes  I  a  cause ball  I  went  and  did  k i l l e d !  real I  soccer  thought ran  I  against  so. the  c h i l d r e n knew  activity  resulted  in  from severe  limitations.  dance really  My  goalie  i t hurt  chose  participated in  soccer  the  wanted  pain.  that  p r o t e c t e d . . . . the  previously  Thus C:  out  I  and  frequently  left  sport  to  they  so  Day.  strange.  different  through  Sport's  tried  really  move  felt  I  am  and  [gymnastics]...  experience pain.  limits  it  my As  activity,  day  I  I  out,  One  every  C:  like  left  an  I  school.  feel  felt  to  their  at  so  i t started  alot ...It a  [pain]  p o u n d i n g ... l i k e  with  can't  i t so  do  I  what  sort  I  bothering was I of  want  in  me.  my  couldn't limped  to  do.  along.  What  59  everyone  else  sometimes To in  because  summarize,  physical as  both  i n school  because  o f my  (P.E.),  and  For these  pain  pain  and  crucial  and  i n their  to p a r t i c i p a t e  track  activities  limitations lives  walk  ankles.  i n  sports  and  with  c h i l d r e n , however,  meant  period  striving  i n other  can't  particularly  basketball, volleyball,  school.  I  a l l c h i l d r e n yearned  education  such  i s doing  field  peers  activity  i n activities  when  these  t o p a r t i c i p a t e i n t h e same  after  meant at a  children  activities  as  were their  peers . In  the next  a r t h r i t i c lives  pain  w i l l  Coping  be  with  These recurring had  Unpredictable c h i l d r e n had  arthritic  experienced  pain  f o r 2  "learned  to lived  their  I can.  pain  Furthermore by C:  their  That's  arthritic and  i t into  Arthritic  had  with  c h i l d r e n managed their  daily  discussed.  with  best  these  incorporated  to terms  living  pain  and  how  come  they the  section,  seek  they  incorporating I f they  they  learned i t into  like  years. As  i t . "  the only  [doctors]  something  pain.  assistance  had  intermittent,  t o 10  with  pain,  Pain  had  with i t  I can do."  learned  to  By  manage  necessary.  t o cope  Aspirin  they  explained,  " I deal  when  don't  they  thing  their  Thus,  with day  find  a  unpredictable  to day cure,  or Naproxen  or  living. find  60  something  that  be  there,  so  In  this  a r t h r i t i c be  you  might  section,  pain  and  work,  how  i t  as  well  the  coped  is  just get  on  children  with  going with  to i t .  managed  i t s unpredictability  w i l l  addressed. The  children  strategies.  clearly  that  those  strategies  well,  they  used  a  physical  My  C:  I  parents,  on  in  the  I  tried  for  Aspirin, morning, a  lot  aches.  I  get  don't  when  of  both  manage  most  I  3  of  as the  and  action. mentioned  helps.  are  helps. and  3 but  coated  I  at  take  2  night....  most  gave  Aspirin  so  aches.  were  knowledgeable  "pills"/"medicines" in  of  pain.  lunch  These  and  Thus,  frequently  medications  assisted  which  them  direct  take,  at  stomach  accounts  physical  i t usually  a l l children  however,  for  health  pain.  controlling which  their  strategies.  involved  the  stomach  indicated, and  was  Naproxen  am  to  strategies  strategy  C:  own  of  that  decided  effective  their  variety  indicated  themselves  combination  medications  a  strategies,  more  strategies  Physical  what  were  using  children  they  developed  psychosocial  Taking  the  pain  recommended  showed  children  managed  While  professionals  As  will  were  taken.  administrating  about Most them.  me  61  R:  What  medications  C:  Entrophen  a r e you on?  10, P a l a f o r m ,  Multi-vitamins,  Naproxen,  Entrophen  Vitamin  C,  5, a n d  Methyltrexate. R:  Who  C:  My  Dad  R:  Do  your  C:  gets  them  or  ready  f o r you?  Mom.  medications  help  your  hurting?  Sometimes.  The  children  were  p r e s c r i b e d 1 t o 10 m e d i c a t i o n s  two  children  also  mentioned  injections. mother  One  child  to administer  R:  What  C:  Plaquinol,  explained Gold  a  there, them Now Because Gold  this  families  so  I  said  t o my  Mom  child  them  I get  thought 1 had  why  i t and  to  was  was  became  able  got i t was  t o go  don't  youl e t  they d i d .  me.  administered  into  treatment l i f e  t o do  mother  regimen  that  doctor.  so  this  h i s  forgot the  t o me....I  week,  child's  o f how  them  every  she i s g i v i n g  medical  example  gives  y o u how  I  and Gold.  that  I  encouraged  to him.  drag  teach  injection,  weekly  Mom  at the family  real  he  Gold  eye drops,  of the eye drops  them  how  on  a r e you on?  Tolectin,  were  injections  medications  name  they  daily;  h i s  weekly  to incorporate  h i s daily modified as normal  l i f e .  This  i n the as  this  i s one  children's  possible.  62  Although cessation  the children  of medications  previously  mentioned,  that  medications  not  while  necessarily C:  After 5  knew  from  resulted  they  also  helped  experience  i n pain,  learned  control  as  from  pain,  that  experience they d i d  eliminate i t . I  started  months,  taking  I didn't  was  s t i l l  R:  How  d i d y o u know  C:  Cause  medicine  feel  f o r about  any p a i n ,  buti t  there.  I would  i t was  bend  s t i l l  down,  there?  i t would  be  a  l i t t l e  sore .. . When  taking  pain,  the children Eight  tub to  medications used  children  pain  C:  Take  R:  You  C:  p i l l s ,  also  then  mentioned  help  I t just it  either  that  the  strategies. they  currently  soaked  i n a  or i n the  warm  past,  have some  a  bath.  stiffness.  helped a  to soothe  i t so  warm  I could  move  an hour  because  b i t more.  R:  Did i t get r i dof the  C:  A b i t .  C:  I'd soak  i n the tub f o r a half  I  sore,  so  Did a  get r i dof s t i f f n e s s ?  [ankle]  was  eliminate  (stiffness).  my  bath  additional  reported  i n the mornings, relieve  d i d not entirely  well  hurting?  not sore,  but  s t i f f . . . .  63  That  was  before  I  got  my  waterbed.  Now  I  am  seen  as  f ine . As very  indicated,  effective  stiffness. children  in  children  R:  Why  attributed  C:  On  a  They  you  think  i t  normal  bed,  place  for  a  long  It  warm.  You  is  i t . . . f i t s The  combination  the  children's  of  the  health  of  heat,  morning three  eliminating inactivity.  sleeping  on  a  Two  waterbed.  helps? can't  move  when  can't  move  cause and  my  they  of  shape  knees are  around.  in  one  time.  around  you  warmth  easy,  just  sink  seem  to  but i n .  soothe  joints.  professionals not  and  waterbeds;  period  stiff  was  l o t .  stiff  buoyancy  sore,  Although application  for  a  really  on  pain  prolonged  helps  get  night  to  I  waterbed  with  rationale  waterbed do  a  slept  waterbeds  provided A  C:  children  credited  C:  on  eliminating  Five  pain/stiffness  sleeping  suggested  a l l children  the  found  this  effective. C:  They on Ice  Six swelling  [health  i t is  [joint].  That  doesn't  say  to  put  usually  heat help.  better.  children and  professionals]  pain.  found  ice  more  effective  in  relieving  64  R:  When  C:  I stop  However,  your  [joints]  pain  hurt,  by p u t t i n g  two c h i l d r e n  felt  what  helps?  i c e on i t .  that  the cold  made  pain  worse. R:  Some  boys  and g i r l s  t e l l  me  that  using i c e  helps . C:  Well,  C:  The  i t .  Like  on  and that  a l l  frozen  and  l i e o n my  I think  feel  better  health  helped  children  to soothe  R:  and y o u p u t them  like....Actually  I go  t o my  makes  my  pool  pain  worse.  [physio],  R:  Could  I  always  afterwards.  from  r e f l e c t e d that experience but they  decisions  what also  when  strategies  they  the  differed  from  suggestions.  indicated painful  you t e l l  not only d i d  provided  that  a p p l i c a t i o n of  creams  joints.  something  called  time .  A5-3-5.  room  waterbed.  You mentioned  C:  with  and they g e t  professionals'  Two  peas  bother  more  statements  f o r their  I don't  hurt  e f f e c t i v e f o r them,  rationale  them  i n a warm  know  me.  these  makes  the cold  I go  children  help  you take  When  children's  these were  i t doesn't  me  what  that i s ?  A5-35  last  65 C:  I t i s a It  What  C:  Well,  C:  does  also  just  would  move  be  were  carried  much  of t h e i r  these used  either Six  down,"  muscles.  like  slows,  and  then  i t  at school  children a  of these  Because  helps.  other  that  painful  That so  much.  strategies  the children  t h e home,  or at  found  around.  i t not hurt  most  outside  developed  [knee]  makes  expected,  time  "putting  heating  the cap  o u t a t home.  children  Junior.  soothing.  sometimes As  Absorbine  i t do?  i t feels  was I  I t i s like  i s f o r aching  R:  Massaging  cream.  i.e.  strategies  at  spent  school,  that  they  home. "resting"  joint  such  up," and  as  "sitting  "relaxing"  was  helpful.  They res  C:  I  stop  C:  Usually  pain  by  relaxing  i f I g e t o f f my  just  rest  goes  away.  emphasized,  them  [hands  feet  f o r awhile,  however,  that  when  o r my  writing].  ankle  i t [pain]  i t took  time  and  usually  f o r pain  olve. C:  I  just  s i t  down,  go  away,  i t s t i l l  it  t o go  away.  but i t [pain] takes  maybe  s t i l l 45  doesn't  minutes f o r  to  66  In  contrast,  made  pain C:  two  Sometimes  I  walking.  Sometimes  I was But I  as  (pain), in  pain.  this  right.  at a  i f I  I  whereas But as  just  so  moving  f o r awhile then  seemed  down"  joint  cramped  twisted  but  s i t with  my  stretched.  the  left  bit.  about  down  up  again  down.  double i n  bind,  stiffness  also  resulted  dealt  with  o r by  changing  positions  and  joint.  I always  My  i n a  me. i t and  sitting  resulted  slowing  talked  out.  relax  few c h i l d r e n  children  stops  I am  a  Eight  the  knees  and  indicated,  positions.  makes i t  bothering  the a c t i v i t y ,  by  down  my  continuing  either  on  i t stiffens  caught  changing  exercising  I keep  sitting  i t while  a  and  i t started  frequently  C:  "sitting  stretch  s t i l l ,  to rest  predicament  C:  that  down  just  dance  children  down  slow  s i tdown  I keep  of these  sitting  just  l e t i t stay  so Some  stressed  worse.  worse,  C:  children  legs  o u t , then  I have  t o bend  my  legs  them.  I t  pain.  knee  would  i t wrongly.  I t [pain] i t doesn't  hurt So  would usually  i n the day time I would  go  away  until  be  limping  after I am  i f I a  awhile,  sitting  on  67  the  couch  with These  quotes  strategies The were  most  knee  by  Not  changing  only but  did  they  range  children  mentioned  going  i t goes  wide  m e d i c a t i o n s and  icing,  strategies,  T.V.,  then  the  the  frequently  waterbed,  and  represent  used  taking  joints.  my  watching  to  children  also  used  a  down  away. of  physical their  action  baths,  positions  the  and  relieve  direct  warm  up  strategies  sleeping  and  resting  use  pain.  on  a  their  physical  number  of  psychosocial  strategies . The  children's  cognitively  managed  "forgetting  about  not  only C:  when  i n pain,  but  also  about  t r y to  i t . . . . I f  else,  keep  my  I w i l l  mind  just  ignore  I t or  C:  I  just  t r y to  forget  C:  pain  other free.  sometimes  of  t r y to  about  things,  think  goes  spring  about  away.  as  much  as  days.  ignore i t .  i t cause  i t i s  with.  distracted I  that i s ,  o f f i t [pain]  think  I  child  when I  a l l children  about  i t sometimes  C:  over  that  distraction, thinking  possible.  One  by  and  Forget  I  pain  showed  i t , "  something  C:  accounts  t r y to  herself  think  about  by  using  pain  imagery.  i n funny  ways  so  I  68  forget  about  think to I Several T.V.,"  about  s i t down  caught  up  I f my  hips  these  accepting  of t h e i r  about  When  i t [pain]. "watching  and g e t  and n o t t h i n k  I can't  a l l  about  was  another  strategy  By m a i n t a i n i n g  children  tried  float  used  by  p o s i t i v e and  [voice  trails  happiness.  I really  off].  getting  I f i t comes go  down  getting  pushing.  pain,  on  i n t h e dumps  I t r y to keep  If I start I keep  d a y a n d I c a n be  I start  downward.  suddenly,  best  just  a positive  to remain  b u t when  really  raised],  I  situations.  in spirits, slowly  walk.  T.V.  I t c a n be a p e r f e c t l y n i c e up  C:  trying  digging.  a book  are hurting,  thinking  attitude,  "Wishing"  o f me  "reading,"  and read  of the c h i l d r e n .  I  just  music."  i n t h e book  and watch  Positive  C:  inside  think  by  I  [pain].  sit  several  to  I will  it  C:  pain  sore,  and f o r k s  don't  ignored  "listening  I am men  picks  not, I just  children  C:  the l i t t l e  get out with am  and  it....When  my  i t [voice  I deal  with  i t the  I can.  away I wish  pain  was  mentioned  i t [pain]  would  go  by o n e away,  child. you  know,  69  cause  i t is  very  going  please  go  sometimes really  there.  for  a  cure  is,  for  a  future  C:  I  am  try  also free  there  always  have  i t so  with  i t the  best  I  keep  my  a  up,  but  I  they  hoped  Despite children the  the  used  helped."  While  that  the  pain, gave  not  children they  them  am  i t  wasn't  i t .  mentioned.  doubt  go  That  to  do  want  not  one  that  trying  s t i l l  for  a  or  I live to  hoping  cure, be  that  you  seemed  knew do"  and  was  age  had  the effective  that or  "nothing  powerless  nevertheless support  that  strategy  can  at  "puberty."  strategies no  also  resolved  at  children  much  wish  cure.  of  pain, the  am  eventually  range  Rather, is  a  "twenty,"  manage  there  alleviate  network  to  time.  "sometimes  wide  um  i t w i l l  a  can....I  children, while  "eighteen,"  of I  be  would  I  there  And  overlook  bit  w i l l  pain,  and  maybe  there  that  lot  sitting  pain.  will  hopes  know.  that  i s  am  frequently  of  hoping  I  you  to  but  "sixteen,"  to  a  day,  believed  all  I  was  s t i l l  maybe Most  away,  i t ' s sore  "Hoping" hope  painful.  a  at  times  supportive  assistance  when  necessary. A l l  children  found  children  stressed  that  normally  as  possible.  their  parents  parents Not  only  supportive.  assisted did  them  parents  to  live  assist  The as with  70  pain  management, but a l s o  living  that  C:  were  with  affected  [Parents]  they  kids  and  kids  do, so  by  feel  they  know  activities  of  daily  pain. I am  like  I c a n do  i f I can't  the rest  almost  they  w i l l  of the  what  other  t r y to  help  me . Although required home,  eight  children  assistance  two  with  children  activities  stressed  was  especially  i n the mornings.  What  C:  I  essential  that  assistance  R:  happens  feel  get  up into  as  I can a f t e r  the bathtub  dressed  exercises. bends to  my  at  i n the morning?  i t i s hard Mom  cause  I  can't Mom I go  My  my  stretches then  f o r me  sort  bath....My  knees....And  living  parents'  sometimes...Then Mom  rarely  my  of  maneuvers  move  as  helps  me  do  well to  my  shoulders  Mom  to  drives  and me  to  school.  Some Dad I  my  of d a i l y  y o u g e t up sore,  they  functioning,  o f f t h e bed....My  me  get  C:  and  that  their  to their  when  s t i f f  mentioned  days  my  to carry  just  drives  drive me  to  arthritis me...My my  Dad  scooter  school.  i s real built up  on  bad a  so  I get  t r a i l e r  i t a n d my  and Mom  my  71  As  Indicated,  assisting but  also  parents  their  meant  doing  again, this  the  child  child  I  family  When  do  have  was  To  I  I  felt  at  home,  the  support  family. i n  Once helping  protective  didn't  and  I  proud  of myself  do  the  that  with  my  f i r s t  time  I  thought  I  Dad.  I  sorry  f o r myself.  and  can't  would  there  their  a  f a c i l i t a t o r  can  my  I  take  pity  g e t mad  and  children  I  family. started couldn't  Well,  I  anything.  o f me.  Then  he  just  1 was  my  Dad  left  me  sort  of  how  parents  loved i t .  quotes to  do  a t me,  d i d i t myself.  summarize, these  assisted  only  parental  as  within  with  arthritis  he  a  younger,  Everybody like  as  s k i .  I was  i t .  not  i n  family.  to  skiing  that  together  acted  the  like  facilitators  to function  commented  activities  of  as  school.  to normalize  environment C:  children  to attend  Another  acted  live  illustrate as  normally  as  possible . Not found  only  their  were  parents  friends  not  know  much  the  c h i l d r e n were  supportive,  supportive.  about  arthritic  limited  While  pain  they  i n activities  most  children  most  friends did  understood because  of  pain. C:  They  know  I  can't  do  a  l o t of  sports  and  that  72  sometimes  C:  If  the  I  w i l l  kids  are  there  wishing  I  do  can  am  and  with  they  the  while to  ball  are  they  so  I  would  go  And  then  I  are  stateboarding  stop talk  get  t e l l  catch  so  I  up  and  skateboarding  they  can  so  know  they and  they  sitting  [friends] So  doing.  away  over  And  am  am  come  they  me.  I  and  they  something.  talk  what  something.  and  them  they  throw  arthritis  about  about  walk  stop  skateboarding,  skateboarding me  to  skateboarding  my  depressed  to  have  that  me  i t  to  while  makes  me  feel  better. Furthermore, provided C:  most  assistance I  think  me  C:  children  with  i t i s the  Sometimes party, usually  when  and  indicated  things  we  help  friends  needed.  important  they  that  I  that  can't  [friends] have  me  to  Some  friends  help  do.  help  walk  walk.  my  me,  like  awhile, don't  at  then know  a they  I  have  arthritis .  C:  My  friend  out back  on to  the  helps f i e l d  l i f t  me  up  a  cause  myself  up.  l o t of I  can't  times bend  i f we my  are  hands  73  While  most  relationships the  with  importance C:  of knowing o f my  know R:  What  C:  Well,  like  t o have  kind  of things would  they  t e l l  me  know kind  what  that  of pain  kind  s t i l l  go a n d r u n a n d do  Cause  1 know  what  they  quotes  show  that  knowing  the children  they C:  This  with  a  common  feelings  t o be  But  they  they can.  through  with  pain  of  of knowing  pain,  they  through.  bond  having  told  what  to explain  encouraged  each or  these  themselves.  contrast,  the children's  the children rarely  going  others  I  have.  are going  bond  or their  about?  and u s u a l l y  they  common  experiencing without  pain.  everything  I am  of  a r t h r i t i s .  I have  of pain  stressed  sort  you talk  I have  what  sometimes  pain.  have  i t feels  know  In  who  what  what  their  also  i t so they  them  was  children  have  they  children  is,  others  supportive  friends  understanding.  hide  about  five  and  provided  other  talked  friends,  Some  C:  These  children  passively  accounts  showed  that  accepted  pain.  That  complained.  I f I have  pain  at school,  I  just  grin  and  bear i t . Several  children  C:  I don't  explained complain  why  they  because  don't  complain.  i thurts.  I  don't  74  really  t e l l  hurts. away These children also have  cause  And I always  i f i thurts, i t  think  i ti s going  t o go  anyway.  quotes,  have  they  anyone,  above  learned  wanted  and below,  t o manage  suggest  their  own  t o be b e l i e v e d  when  they  complain  I have  that  the  pain,  but  said  they  pain. C:  I don't for  so l o n g .  because have  cause  1 hate  being  i fyou complain  heard  a  o f t h e b o y who  don't  want  t o do  trust  me.  pain,  she knows  that.  (pause)  l o t(pause) cried  I do  I am  with i t  complainer you  wolf....I  I want  When  that  a  lived  people  t e l l  my  having  to  Mom i t ' s  really  bad  pain. To pain  summarize,  on t h e i r  sought  own  support  C:  b u t when  much  as  I just  was  from  bad.  or something."  tried  this  and a s s i s t a n c e  I f i ti s really ice  C:  the children  t o manage  their  not effective their  I g o Mom,  She w i l l  they  parents. " I need  some  t r yand help  me  as  possible.  t e l l  my  D a d o r Mom  that  i t hurts.  That's i t . When those  the children  of their  parents  knew  that  failed  their  efforts  to alleviate  and  severe  pain,  75  then  medical  treatment  unmanageable  One  children  kind  involved Last  talked  could.  want  physio  and  kind  aspiration  and  tried  The  children  having  their  C:  I  to  eliminate  get  or  be  of  was  their  treatment.  But  really So  on  I  and  a  when as  my  far  had  to  either  as  and  I  i t  go  serial  to  casting. for  for  other  joint  p i l l s ,  reaction  inject  my  referred  to  but  them  I  so  joint.  to  "injected"  [doctors]  walked  steroids. these  had  I  sore  frequently,  of  to  and  walk  away.  most  sometimes joints  place.  physicians,  I  decided  loose  exercises  put  i t and  ...they  kinds  couldn't  go  injection can  two  really the  involved  changes  they  was  Everything  didn't  You  I  came,  medication  C:  about  a l l over  flare-up  other  to  physiotherapists.  summer  around  The  required  pain.  The  C:  was  this  and  treatment  as  "drained."  injected  my  left  knee...with  Cortisone. R:  And  C:  They  that  was  were  hurting  because  of?  a l l swollen  me.  And  that  and  i t was  made  them  really go  down  again. Most  children  treatment  at  stressed least  once  that and  they for  had some  experienced children,  this  76  frequently.  I t was  either  done  at  the centre  or  i n the  hospital. C:  I had  the f l u i d  taken  of  knees  just  my  taken  out  knees  I had  two,  One  of  I had  R:  And  C:  Because of  child  you  and  done  at at  three  last  wrists  done  had  described  my  out  month,  and  my  I  out  had i t  and  The  the  other  hospital.  i t taken  out  because?  stiffness  and  pain.  the  ago  ankles.  the centre the  months  treatment  as  she  the h o s p i t a l  and  experienced  it . C:  I went  over  [physio]  therapy.  my  and  knees  after but of  that,  when  they  around  their they  and  c h i l d r e n found joint(s). were C:  C:  pain Now  I  do  most  I had  i t hurt back  down, took  a  this  and  g o t my  while to  free  ankles  they  drained  were  the room,  But  doing i t ,  I was  down.  kind  I t felt  I was  just  good  moving  l o t better.  treatment  f o r an  to  the b i g needle.  l o t out. a  went  [doctors]  crouching  i t was  Thus, free  They  i t hurt,  I got  bending  cause  Most  to  eliminated  unpredictable t o be and  pain  i n  interval  "active."  wrists  drained,  I  can  things.  the i n j e c t i o n s  i n January  and  then  a  77  couple  of months  started When  pain  t o come  free,  unpredictability normalizing what  they  after  by  within  on  living their when  Furthermore,  the  I t seemed  knew  pain  from  a r t h r i t i c  was  incorporate  as n o r m a l l y  pain  as  they  coped  lived  pain's  possible.  caught  limited  they  they  that  Hence,  i n their  unpredictable  with  up  their by  focusing  moment  to  certain factors  knowing  daily  this  lives,  By  with  on  moment.  i n t e r m i t t e n t and u n p r e d i c t a b l e ,  experience pain.  just  slowly.  limits,  functioning.  Although  i t [pain]  the c h i l d r e n coped  had missed  present.  that,  they  influenced  they  learned  to  intermittent,  pain.  Summary In  this  experience  chapter,  with  study  found  onset  a r t h r i t i s  pain  that  crucial to  a r t h r i t i c  that  these  their  a r t h r i t i c current pain pain.  study  i n their  pain  found within  experience  influenced Past  arthritic  their This  early  and  late  intermittent, recurring peers  lives  they  were  when  activities these  was  Past  striving peers.  discussed past  and  experience  of current  viewed  at a  their  of their  a r t h r i t i s .  perception  as  children  the context  pain  of  presented.  with  that  with  their  were  activities  p a r t i c i p a t e i n t h e same This  pain  accounts  ten children with  experienced  limited  period  the children's  t o be  with  a r t h r i t i c more  78  severe,  more  currently  frequent,  experienced.  differentiated pain.  between  Arthritic  pain  intensity  than  described  arthritic  joints  that  hurt.  The pain.  type  beginning  as  increasing  pain  perceived  pain  as  and  was  described  The an  other  ache  word  descriptions intensity This  show  The  children also  found as  the  pain  episode  perceived  to  be  mediating  factor  children  tried  an  these  time.  but as  gradual,  intensity used and  a  with  variety  graphic  pain  varies  in  to  how  the  to  suggested make  event,  present.  with  the  suggested  pain  children  unpredictable  synonymous  pain  of  arthritic  that  pain  presence  varied  described in  their  a r t h r i t i c  brief,  was  in  were  of  increasing  a r t h r i t i c  of  A l l children  over  types  in  in  time.  study  f i r s t  joints  and  that  greater  located  descriptors, analogies  to  over  be  intensity  as  type  non-arthritic  duration  pain  two  and  pains.  and  within  than  children  to  feelings  addition,  activity.  unique  Absence  arthritic was  joints  excruciating.  of  these  children described  One  lasting  Likewise,  Frequency  In  their  longer  e x t e r n a l l y induced  unpredictable. between  and  Pain  children of  presence  sense  of  from  arthritis  absence  pain  viewed  and  onset  of  was the  functioned. a r t h r i t i s ; of by  a r t h r i t i s . attributing  The i t  79  to  absence  of medications,  inactivity, All  boys  with  in  This  study  influencing  their  these  children  choices  were  past  with had  learned  the support  when  pain.  these  pain's  with  w i l l  of t h e i r  developed  were  As  a r t h r i t i s  one  [pain]  In  the next  be  discussed  selected  child  research  by  chapter,  studies.  and  pain  and  that  others,  strategies also  they  found  coped  normally  "the best  forgetting  years,  found  and  of  study  as  own  study  the findings  i n relation  t o 10  their  range  living  i s just  or not to  peers  free,  stated:  field  knew  experience  This  parents,  pain  and  Factors  t o manage  In conclusion, this  children  as  children  f o r 2  pain  a wide  girls  peers.  necessary.  unpredictability  possible.  their  a r t h r i t i c  with  manage  with  such  track  whether pain.  a s s i s t a n c e when  children  chose risk  seek  these  these  and  to participate living  and  i n  i s , both  i n sports  that  They  i n sports  That  volleyball,  found  participate  By  limitations  to participate  limitations.  desire  their  similarly.  basketball,  P.E.  their  viewed  peers  longed  baseball,  "flare-ups,"  activity.  children  activities and  and  disease  cure they  of this  to the findings  to that  with as f o r kids have  i t . "  study of  other  80  CHAPTER  V:  DISCUSSION  OF  FINDINGS  Introduction The findings  purpose  of  of  study  findings.  this Some  of  this  chapter  i n relation  the research  discussed  i n Chapter  chapter.  In a d d i t i o n , other  supports  or  reviewed. perspective the  same  i n each  Description The  duration,  and  t o be  1986; 1981).  Jeans,  Savedra  children's years,  1983;  and  on  children's  only  the  discussed  &  were  able  findings section  here.  to  describe  intensity,  of  the  are  current  consistent  pain.  Ross,  (Gaffney 1984;  studied  &  Savedra 114  choice  acute  pain.  questionnaire,  Using  school  Dunne, eta l ,  healthy  hospitalized children's, 9 of  i n  major  i n v e s t i g a t e d how  pain  et a l . (1981) 100  be  i s organized  children's  acute  Ross  descriptions  answer/forced  The  studies  children describe  this  either  w i l l  to l o c a t i o n ,  i n this  previous  be  study  i n relation  research  chapter  i n  Pain  frequency.  previous  which  the  IV, but  w i l l  i n this  discussed  Several age  section  children pain  with  Chapter  discussed  findings from  This  of A r t h r i t i c  arthritic  study  as  be  research  literature  research  research  the  to previous  based  also  these  i s limited.  manner  findings  I I w i l l  contradicts Previous  i s to discuss  a  to  12  short  c h i l d r e n were  asked  81  about  causes,  words  pain  and  purpose  were  administered  separately and  7th.  to  day  causes hit,  physical  to  words,  described  pain  and  to  causes  from  a  along  the  or  quality their  may  of  (1984)  knowledge  the  and  in  an  to  of  with/without major  974  groups;  external  as  being  groups  that evaluative  writing  choice  for  may  was  written groups  the  of  children  Furthermore, be  influenced  s k i l l s .  age  study,  children,  f i r s t  Ross  children's  acute/chronic  problems. the  to  descriptive  school of  used  answers.  answers  listed  or  both  l i s t ,  opportunity  American  health  in  forced  their  found  children  administer  extensive  understanding  years,  4  and  investigated  consisted  to  on  such  questionnaire a  and 2nd.  listed  a f f e c t i v e , and  The  children's  sample  assigned  l i t t l e  the  illnesses  predetermined  in  children's  children  While  elaborate  to  time  researchers  hospitalized  the  easier  one  between  occurrences  sensory,  comprehension  Similarly, Ross  be  at  children  related  when  questionnaires  hosptalized  whereas  i t allows  explain  children  Healthy  clearly described.  children,  &  grade  Limitations:  questionnaire  by  entire  addition,  selected  not  the  everyday  etc.  In  dimensions.  written  to  internal  treatment.  The  pain.  related  feelings  pain.  healthy  of  f a l l i n g ,  pain,  h o s p i t a l i z a t i o n . The  in  descriptions  of  describe  hospitalized of  differences  to  pain. 9  to  12  Children  were  3  were  groups  The  82  representative California. children  The  with  interviews  o f an  school  4 t h . group  chronic  were  individually  urban  of 6 subgroups  Semi-structured  with  i n schools,  population i n  consisted  pain.  conducted  age  the  hospital  or c l i n i c s .  of open-ended q u e s t i o n s  developed  was  asked  Additional  related each  to s p e c i f i c  subgroup,  painful  Test/retest  reliability  24  twice  children  naive  Interviews according  were  children  with  The  was  had  days  answers  audiotaped.  98.7%.  were  with  two  were  Data  were  definitions  were  children  used  general pains  a number  such  o f word  burning,  squeezing,  agonizing"  ( p . 184)  as w e l l  children  These  described  quantification.  as  by  that  about  the  pain.  and  stomach  12.2%  aches.  d e s c r i p t o r s such jabbing,  dull,  as a n a l o g i e s  researchers  pain  identical.  unidimensional,  discomfort  "stabbing,  illustrations.  interviewing  f i n d i n g s suggest  children's pain  to s p e c i f i c  headaches.  Interrater  to l e a r n  stressing  of  analyzed  opportunity  80.9%  asked  almost  categories.  The  study  interviewers  little  related  and  by  basic  questions  e s t a b l i s h e d by  10  to predetermined  reliability  The  within  to the study.  children  was  A  for this  conditions  f o r example,  taped  children  set  of a l lc h i l d r e n .  of  also  and  found  The as  and graphic that  a  few  d i s c r i m i n a t i v e comparisons  83  Similarly, were  able  to  arthritic and  a  current  non  a r t h r i t i c  joints  variety  of  of  of  c h i l d r e n and  described as  by  spear,"  and  intensity  Previous  described the  other  this  research  participated  A l l of  their  involved  year  reported  an  word  over  pain  One  the  type  that  was  majority  brief  such  time.  the  pain  descriptors  a r t h r i t i c  as  such  "like  reflected  i s scarce.  pain One  17  asked l i s t  to  select  that  i n their 53% a  of  a the  "sharp"  et  words  to  discussed  a l . (1983a) i n who from  how  some  the  a  their  feeling  17  whereas year  sensation  50%  joints from  children reported  joints,  12  study  described  A l l 39  from  years,  children reported  joints.  reported  and  that  by  acute  to  and  children  arthritic  "sore,"  children, 6  feeling olds  as  Beales  the  the  duration.  by  word  f e l t .  11  and  was  conducted  were  predetermined  joints  varies  of  analogies  on  I I was 39  their  pain.  in  "aching"  types  illustrations  perspective  The  pain  study  was  "shooting,"  children's  Ireland.  two  intensity  graphic  of  chapter  shows  s i x children using  "sharp"and  between  In addition,  current  about  by  ache  that  the  described  term  pain,  between  descriptors, analogies  finding  long  intensity  children  word  Another  a  that  time.  illustrations  distinguishable  found  over  graphic  children  study  d i s t i n g u i s h pain  and  within  used  the  of  an 6  to  old children such  as  "cut,"  84  "pricked,""smacked,"  or  in  used  the  did  current  the  pain.  pain  children  The  Canada  and  a  limitations l i s t  are  imposed  consistent  by  the  used  by  the  to  or  the  choice  findings  as  their  children  describe  al.'s  previous  descriptors  describe  culture  et  children  to  forced  Beales  with  that  a  word  the  study  Ireland of  of  in  a r t h r i t i c  result  of  predetermined  study.  of  the  research  children describe  current that  pain  study  has  in  a  variety  ways.  Making  Sense  This entire the  pain  of  changed  of  found  the  pain their  talked  and  The  shock,  fear,  The  They study  information information,  that  an  pain  This  c h i l d r e n viewed  unpredictable episode  being  change  sadness. did  not  found w i l l  children  that  by  i n i t i a l  their  construct  a  the  pain.  their  own  loss  onset  i n of  unexplainable  children  children  The  arthritis  reactions  themselves  even  explain  the  from  present.  represented  Several  blame  of  their  event,  the  remembered  mystified  recalled  to  diagnosis  c h i l d r e n who  children  me"?  as  the  subsequent  lives.  and  Pain  that  first  about  pain.  This  Arthritic  experience  functioning. pain  of  study  onset  onset  "why  in  summarize,  demonstrated of  in  Few  same  i n words  function  used  the  Beales's  children  be  To  in  difference  may  word  study  "pinched."  of  questioned  for  pain.  search  for  Lacking explanations.  85  The  children i n this  pain  episodes  environment such  as  happenings  i n  as  and  beginning  activity.  of  their this  Gaffney  t h e age  semi-abstract that  concrete,  of  & 11  joints  joints kind  of  and  also  that  varied  pain  blockage."  "flare-ups,"  that  to  children  immediate  environmental  unseen  years,  events  factors  (1986). 13  move  with  Gaffney  found  t o more  to  change  i n concrete  abstract i n the  over  happening terms  (1986)  from  semi-abstract,  such  as  current  feelings located  was  that  & Dunne  to  i n intensity what  Jeans  concrete  definitions  as  pain  children's  from  Children  as  environment.  Jeans  years,  are  such  concrete  something,"  pain  explained  to cause  explain  i s similar  to  t o 13  Similarly,  i n age.  their  found  i s congruent  Dunne  thing,  conceptualized  finding  immediate  of pain  study  children  a g e , 11  or feeling,"  increase  could  (11.3%).  children's pain i . e . "a  who  their  disease  (36.3%),  study  ideas.  "sensation  and  experiences  to conceptualize  and  children  pain  at this  conceptualizations  i.e.  (1984)  illnesses  finding  found  This  accidents  a r e beyond  between  experienced  of medications,  & Ross  Children  (1983)  they  specific  such  (11.3%)  The  to immediate  and  attributed  that  intermittent  cessation  of Ross  causes  attributed  that  inactivity, that  study  inside  time.  The  inside  their  as  "some  86  As (1983a) joints  previously  mentioned,  children  study  asked  the feelings  meant  perceive  to  these  damage,  but  feelings i.e.  were  children,  represented  severe the  term  children joints,  aspect  of  This of  and  years  internal that  of  of  joints  joint.  In  to  the disease  about  what  were  perceived  t o be  such  terms  as  i t s e l f .  mentioned  and  While  the  of  study  inactivity  happening  explained  the  the r e s u l t  the children  was  their  contrast,  study  factors  the  condition,  implications  joints  None  d i d not  reported  i n their  et a l .  their  C h i l d r e n i n the current  i n concrete  the  inside  their  internal  d i d not  dwell  on  this  pain. current  a r t h r i t i c  pain  past  longer  lasting  children  standard  i n their  i n  disabling  i n the current  nonchalantly  viewed  The  11  years  their  to external  wondered  happenings  17  i n the  damage.  pain  they  of  damage  "damaged."  activity  to  Feelings  feelings  attributed and  as  internal  12  to  representing  the unpleasant  the c h i l d r e n  different  as  them  (p.63).  interpretated of  Children 6  feelings  "reminded  a r t h r i t i s "  none  them.  what  i n Beales  by  pain  study  changes t o be  than  used which  also  their they  over  more  what  found  time.  painful,  they past  that  children's  These more  experienced pain  evaluated  children  frequent,  and  currently.  experiences pain  view  as  currently.  a The  87  current recent  findings research  Lollar, in  own  pain  asked  to rate  their  Pediatric  Pain  developed  by  consists  potentially common  activities  medical, severe greater series  of daily  than  others  duration. of forced  information  living, Some  a n d some  on number attendance  the  study,  t h e c h i l d r e n were  Intensity pictures  according  was  and green  "some,"  and " l i t t l e " the pain  instrument, instrument  a  range  pictures  of  project were  project pain  asked  asked  3 color  representing pain.  intensity  As  part  of  the pictures  t h e 24  with red,  respectively  that  obtain  of the pain.  by s o r t i n g scale,  to  a  illnesses,  to rate  Children group  of  questions  and d u r a t i o n  more  i n i t i a l l y  to illness.  measured  to a  yellow,  choose  related  intensity  of pain  were  The  of hospitalizations,  school  the perceived  t o 19  recreational,  demographic  and  on  This  The s u b j e c t s choice  pain  situations i n 4 settings:  and p s y c h o s o c i a l .  pain  using  representing  evoking  past  rated  The c h i l d r e n  projective  researchers.  pictures  pain  study.  a  differences  children, 4  experiences  Inventory,  these  o f 24  pain  pain.  children  their  and f o r t y  participated i n this  of  found  when  against  hundred  the findings of  (1982)  of pain  experiences Two  with  perceptions  & Patterson  perception  experiences. years,  on c h i l d r e n ' s  Smits  children's  their  are consistent  were  "much,"  then  represented  asked the  to  88  most  pain  found  that  among  all  as  who  experienced.  who  described  "much,""some,"  reported  categories  children  had  c h i l d r e n who  experiences children  they  of current  reported  or  own  pain  were  pain  " l i t t l e . "  past  pain  much  their  and  l i t t l e  Differences  The  experience  as more  rated  p a i n f u l than d i d  t h e some  level  of  past  pain. In recent  contrast, the pain  perception looking The  of pain.  with  study  because  of  in  their  interpreted  i t had  of pain.  of current  than  past  pain  i s a  long  term  pain.  new  pain  ENT  to McGrath  against  past  pain  c l i n i c .  influenced  i n  current  this severe The  i s , the  change  their  the children's  strategy  (1987),  9  have  the  lives.  that  study.  and  may  as more  their  by  Young  remembering  a r t h r i t i c  postive  5  ear aches  Furthermore,  interpretation  According  have  the  i n Jerrett's  pain  on  t h e more  explained  between  of i n t e r m i t t e n t pain, may  be  the children  past  that  intense  may  as  only  whereas  functioning  perception  an  such  pain,  the impact  significance  finding  the children  pain  past  episode,  current  t h e more  attending  acute  about  pain  of  argues  p a r t i c i p a t e d were  o l d and were  forgotten acute  This  a t the ages  children  (1985)  experience,  c h i l d r e n who  years  Jerrett,  pain  as  less  f o r dealing  children  experiences.  judge  She  severe with  each  suggests  89  that  as  the  experiences be  diversity  and  increase,  than  tend  to  This  suggests  from  unknown The  perceived  of  shorter of  of  pain  their  This  also  Affect  on  The shows  them  Daily  (Hartup,  dealing  than  pain  are  more  and  common  unpleasant.  perceived  of  study  differently  that  painful,  in  the  their that  own  frequent,  may  be  a  pain  concept  these pain  children  less  past  their  current  related  age  with  1984;  of  time.  children  are  experiences.  growth  with  their  peer  their  and  has  to  compete be  in  accepted  Empirical  has  been  prosocial  research  development  to  1963).  relations  and  and  driven  peers  Erikson,  L i t t l e  and  to  c h i l d r e n are  agression  1984).  interactions  the  Lives  school  with  less  and  their  (Collins;  concerned  as  suggests  activities  research  i s  current  age,  literature  physical by  about  that  that  severe  pain  intensity  experiences,  optimistic  the  duration  the  finding  less  known  current  function  pains  of  pain.  finding  interpret and  that  as  intensity  mainly  behavior  examined  r e l a t i o n s h i p to  peer  physical  activities . In Buckley sixth peers.  an  extensive  (1982)  grade The  study,  interviewed  about  what  Medrich, 764  American  activities  c h i l d r e n were  asked,  Rosen,  they  "What  Rubin,  children did  do  with  you  like  &  in their to  do  90  when  you are with  found  that  children  participating mentioned (28%)  whereas  age  and  orientated were  Petrie  peers  after  school.  i n relation and  knowledge  middle  childhood.  Previous pain  (excluding  activities study in  a  research  o f 74 study  with  of  680  that  cancer  peers  school  about  than  girls  i n winning.  support  the  risk  has  such  pain  Schultz  children  and  may  be  research tasks  children's  Gaffney  as  or not the  investigated on  study  i n school  developmental  and  i n  achievement  activities field  i s scarce.  school  Canadian  previous  pain)  children  567  i n the current  and  at  peers.  Whether  to these  do  In contrast,  and  to participate  girls  with  more  i n physical  were  social  studies  A l lc h i l d r e n  sports  children  f a i r l y  these  track  studies  of  of both  Team  achievement  g i r l s .  ball,  chose  explained  were  volley  their  children  toward  i n playing  to participate  baseball,  o f what  examined  boys  than  interested  findings.  longed  that  friends  (45%) than  activities  (1972)  with  mentioned  Much  attitudes  found  boys  often  physical  findings  current  more  i n sports  more The  with  &  They  by  researchers  time  interactions.  playing.  involves  These  t h e most  frequently  children's  sports.  spend  girls  Maloney school  friends"?  i n active  more  activities this  your  of  the  physical  (1971) & Dunne  i n Ireland  effect  i n a (1986)  reported  91  that  boys v i e w e d  activities. elaborated on  this  except  pain  to be a h i n d r a n c e  Neither on t h i s  of the r e s e a r c h e r s ,  finding.  sex r e l a t e d f i n d i n g t o say t h a t  to t h e i r  societal  70's  and a s e g r e g a t e d  school  80's  may have i n f l u e n c e d  however,  It i s difficult without  further  data,  sex s t e r e o t y p i n g system  these  t o comment  i n the  i n Ireland  separate,  i n the  but s i m i l a r  findings. In or  late  their well in  c o n t r a s t , both onset  arthritis  limitations  and boys w i t h  i n the c u r r e n t  in activities  team s p o r t s .  importance  changes  i n sports,  for skill  explain  why  to  pain  risk  these  Girls  f i n d i n g s may  reflect  and t h e  today.  and a c h i e v e m e n t  d r i v e of the s c h o o l and peer  as  especially  i n our s c h o o l s  mastery  viewed  to p a r t i c i p a t e  i n sex s t e r e o t y p i n g  on p a r t i c i p a t i o n  the i n h e r e n t  strive  current  study  desire  of p h y s i c a l e d u c a t i o n ,  achievement emphasis  These  either early  similarly.  as boys had an o v e r w h e l m i n g  sociocultural  and  girls  The  i n sports  age c h i l d r e n to  acceptance  c h i l d r e n i n the c u r r e n t  to p a r t i c i p a t e i n a c t i v i t i e s  may  study with  chose their  peers. Coping with  Unpredictable  Children  i n the c u r r e n t  strategies,  both  pain.  finding  This  Arthritic study  Pain used  a v a r i e t y of  p h y s i c a l and p s y c h o s o c i a l , i s c o n s i s t e n t with  t o manage  previous  92  research with  that  pain  al.,  investigated children's  (Jeans,  1983; Ross  strategies  1984; T e s l e r  et  1981). As  a  part  previously  of a  study  mentioned,  differences  i n coping  and  school  healthy  children helps of  & Ross,  coping  were  you  responses  Hospitalized  Tesler  s t r a t e g i e s used  better  when  increased  with  children  more  In contrast, sleep,  hospitalized mentioned  of parent  and  strategy  "What  The  site,  frequently  number  needles,  distraction,  than  d i d  c h i l d r e n managed  Overall, taking  fourteen  medications,  r e l a x a t i o n more  was  and  pain"?  to pain  school  children.  by h o s p i t a l i z e d  of c h i l d r e n .  identified  presence  found  to the question  age  and  1981)  hundred  you have  a p p l i c a t i o n of heat/cold  resting,  Two  to respond  the  children.  et a l .  et a l . (1981)  children.  asked  feel  (Savedra  frequently  the most  medications  school pain  by  than d i d  frequently such  as  Aspirin. Similarly Canadian number  of  Jeans  children, 5  reported  physical  strategies.  (1984)  found  years,  reported  manage  t o 13  i n a years  strategies increased  children  to  (1981)  that  pain.  using  only  using  study  reported  with  the other  213  out of  healthy  that  a g e . By  psychological  On  o f 54  the  age  as  well  as  hand,  Ross  &  994  self-initiated  11,  Ross  children, 9 coping  to  12  strategies  93  The number  findings  and  variety  strategies of  their  and  past  Ross  &  chronic  etc.  seemed  stride,  manner this  and  coped  and  to  have  in  then  move  on.  live  as  disease  the  children in  function  children  of  a r t h r i t i s ,  painful  but  study  supports parents,  current  by  events  optmistic  their  this  to  as  possible,  treatment by  study  living  recent  Edwards,  their  them.  their is  as  a  them  pain  in  free  i s , they  a  illness  this  to  study  limits  and  by  selected  activities their  is  symptoms,  Children  and  peers,  to  decrease  while  capabilities. coping  strategy  studies  McLaughlin,  (McLaughlin,  (1975),  chronic  despite  modified  qualitative 1987;  with  own  That  or  between  Normalizing  Strauss  regimen.  knowing  maximizing  one  take  assistance  normally  difference  except  a  that  current  individual  activities  1982;  This  an  alternate  of  to  r e a l i s t i c  according  within  data  physical  headaches,  unpredictability  remaining  s t i l l  also  as  by  and  the  possible.  used  normalized  the  a  that  pain.  a b i l i t y  them  Normalizing, strategy  such  the  suggest  s t r a t e g i e s are  reported  view  With  study  s e l f - i n i t i a t e d  with  conditions  pain's  as  both  (1984)  others,  with  normally  of  current  experience  finding.  friends  the  psychosocial  Ross  with  in  of  1982)  identified  (Anderson  1982).  dealt  with  &  These  in  the  Chung, studies,  parents'  94  attempts their  at  children  Similarly, parents The be  creating within  according  assisted  normal  to  of  this  the  possible of  the c h i l d r e n  to  with  as  the confines  them  findings  consistent  as  live  as  current  research  a  chronic i n this  normally study  as  were  reviewed.  l i f e  for  illness. study, possible. found  to  95  CHAPTER  VI:  SUMMARY  AND  IMPLICATIONS  Summary This  study  children's juvenile written  experience  rheumatoid about  children's  it  a r t h r i t i s  the experience  study  was  their  Literature arthritic  pain  literature study's  do  what  i s known  adults.  by  comparing The  research  children's children meaning  reviewed.  The  has  the  describe  pain  and  how  adults  literature to pain  overt  who  have  experience  describe  f o r them.  their  and  f o r this suggests  differently  the l i t e r a t u r e  demonstrated  pain  pain This  pain  has  behaviors  that been  and  by  a r t h r i t i s .  t h e need f o r  investigates the qualitative  themselves  from  and  background  from  children's  reviewed  a r t h r i t i c  pain  a r t h r i t i c  and respond  children with  that  to explore  children's a r t h r i t i c  observing  literature  was  I t i s evident  about  been  qualitative  to c h i l d r e n ' s acute  and purpose.  than  with  has  pain  this  the theoretical  children perceive  obtained  of a r t h r i t i c  Therefore,  experiences  that  L i t t l e  aged  lives.  related  problem  school  associated  (JRA).  and manage  daily  provided  pain  conducted  children perceive affects  and d e s c r i b e d  of having  perspective.  descriptive how  has e x p l o r e d  aspects  to understand experience  of how  and t h e  96  Data  were  interviews  with  Questions  ten children  evolved  constructing Data data  collected during  from  collection.  verbatim data  onto  were  computer  analyzed  analytical  framework evolved  structure and of  for presenting  explanations their  past  and  day  their  evaluated  their  experiences. more pain.  The  relation in  of  manage  pain  that  analysis, An  the  descriptions  within  of  the  context  both  i n the  these  peers.  changes  over  current  and  pain  school  physical  The  cope  children  was  The  against viewed  t o be  view  of  pain more  than  a r t h r i t i c and  f a c t o r s . The  pain's  limits  children  past  i n duration  psychosocial  with  that  children's  time.  pain  longer  and  age  intermittent pain  to a t t r i b u t i n g  and  after  their  a r t h r i t i s ,  to d i s t i n g u i s h i n g factors  number  and  elements.  showed  pain  with  children described  relation  content  their  that  with  Past  frequent,  and  with  transcribed  the c h i l d r e n ' s  living  found  activities pain  them.  framework provided  experience  arthritic  were  of  present.  study  arthritis  with  Using  for arthritic  to day  i n the  This with  discs.  This  the process  concurrently  f o r themes  interrelationships.  during  interviews  taped  homes.  accounts  occurred Taped  open-ended  i n their  the data  the c h i l d r e n ' s  analysis  two  pain  painful,  current i n  explained  pain  c h i l d r e n used  strategies  to  unpredictability.  The  a  97  findings an  this  optimistic  pain its  of  and  study  suggest  outlook  their  and  a b i l i t y  that  these  r e a l i s t i c  to  manage  children  attitude  i t and  to  have  toward  cope  with  unpredictability. The  findings  relation  to  the  of  this  previous  study  were  limited  discussed  research  in  with  children. Implications A  for  number  findings nursing within  of  of  experience,  Thus  by  to  talk  i . e . at  frequently  over  effectively  for  The sense  of  their  own  what  onset  perspective for  which them.  with  to  allay from i s  fears  to  Therefore,  i t is  includes  how  they  deal  to  try  to  make  constructing essential for  arthritic  understand  and  express  children by  to  episode  sources.  understand  about  illness  related  multiple that  their  children  opportunity  information need  with  pain  help  The  experience  in  can  for pain  early  nurses  the  understand  children  f i r s t  don't  nurses  current  pain  from  implications  the  help  they  made  of  conclusion  provide  Furthermore,  meaning  about  explanations.  to  and  information  second  have  providing  pain.  may  be  c h i l d r e n can  past  time,  with  concerns  searching  of  can  that  First,  context  opportunities  nurses  study  practice. the  Practice  conclusions  this  a r t h r i t i s .  their  Nursing  the  view  pain.  children's  pain  and  i t s  98  The with  third  arthritic  intermittent in  physical  lives  when  peers. own  pain  they  When  have  i s that common  limits  their  school  a s do  exceed  their  children  about  a c t i v i t i e s ,  how  especially  period  i n their  t o p a r t i c i p a t e a s do  the opportunity,  b u t may  age c h i l d r e n  concerns  at a c r i t i c a l  are striving  given  limits,  assist  pain  education,  participate to  conclusion  their  peers.  children  limits  set their  i n order  Therefore,  their  to  nurses  t o p a r t i c i p a t e as normally  need  as  possible . The  fourth  arthritis  have  conclusion  an o p t i m i s t i c  attitude  toward  own  and cope  pain  variety  i s that  pain.  They  with  of physical  outlook  have  children's  s t r a t e g i e s and a s s i s t  strategies  that  to not  this  children with suggesting  in  terms  During aware  about  that  them  the research  to  with  they  pain, should  that  they  and i t s meaning  f o rNursing  of the dearth  t o manage  their  by u s i n g  a  assess  concludes  t o them,  pain  r e a l i s t i c  strategies.  nurses  t o cope  a r t h r i t i s  are acknowledging  Implications  them  t o them  of their  that  researcher  we  learned  and p s y c h o s o c i a l  i ti s important  Finally,  and  with  i t s unpredictability  Therefore,  help  children  choose  long  term  that  by  we  pain. talking  as nurses a r e  have  pain,  are the  but  experts  f o r them.  Research process,  of knowledge  the researcher about  the  became  a r t h r i t i c  99  pain  experience  study's on  findings  be  had  two  years.  been  explored  A  a r t h r i t i c  be  study  with  that  at  different  help  to  over  on  pain of  how  to c h i l d r e n mimimum  intensity  children's during  of  and pain,  the  illness  children  to  find  siblings'  out  their  view  perceptions  concerns  and  their  strategies.  pain  experiences,  adolescents' useful  investigated school  perceptions  i n understanding  meaning To  i t has  study  l i t t l e  i s only  qualitative nurses  w i l l  children with  and  a r t h r i t i c  from  a  age  children's  phenomenological  their  f o r them  conclude,  a  of  pain their  a r t h r i t i c  children's perspective  Canadian  for  research  findings  for a  and  a r t h r i t i c  as  the  this  time.  parents'  helpful  arthritis  understand  study  we  of  limited  periods  this  both  Given  previous  any  was  aspects  While  the  of  measured  qualitative  pain  study  coping  study  and  would  for this  diagnosed  the  onset,  might  scarcity  recurring pain,  sample  who  A  the  a r t h r i t i s .  investigated further.  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Singsen,  B.H.,  Johnson,  Psychodynamics J.F. (pp.  Miller  of  S.M.  B.A.  rheumatoid  Juvenile  (1986).  (1979).  a r t h r i t i s .  rheumatoid  In  arthritis  A.L. St.  Psychological aspects  a r t h r i t i s :  Medicine,23(6),  l i f e .  Berstein,  juvenile  (Ed.),  rheumatoid  Strauss,  M.A.,  249-265).  Skevington, in  Ward,  (1981).  experience: Issues  M.,  review.  Social  MO:  illness C.V.  and  Mosby  the  quality  Company,  pain  Science  567-575.  Chronic Lous,  a  of  of  1975.  107  Tesler,  M.D.,  Ward, in  Wegner,  C ,  J.A. (1981).  pain.  Nursing, Thompson,  Issues 5^  Savedra,  Coping  assessment.  Pain,  L . F . & Wong,  Mosby  J.W.  children  D.L.  (1986).  A  developmental  to pediatric  pain  283-296 .  (1983).  Nursing  Toronto:  The  care  of  C.V.  company. V.A.  (1983).  pain  i n juvenile  &  Visentin  Meeting  Multidisciplinary  rheumatoid  (Eds.).,  353-358).  Chapters  Association Abano  approach  a r t h r i t i s .  Proceedings  of the European  International (pp.  &  Pediatric  approach  2_5(3),  and c h i l d r e n .  Wilkinson,  M.  of  P.T,  351-359.  K.L. & V a r n i ,  infants  Gibbons,  strategies  i n Comprehensive  cognitive-biobehavioral  Whaley,  M.,  Rizzi  of the Joint  of the  of the Study  Terme,  I n R.  to  of Pain  Italy:  Piccin/Butterworths. Williams,  G.F.  a r t h r i t i s .  (1981).  Children  Littleton,  MA:  PSG  with  chronic  Publishing  Company. W i l l i s ,  D.J., E l l i o t t ,  C . E . , & J a y , S.M.  Psychological  factors  influencing  (pp.  I n J.M.  Tuma  28-66).  practice Wiley  &  of pediatric Sons .  (Ed.).  psychology.  (1982).  pain perception Handbook f o r New  York:  108  APPENDICES  109 Appendix Introductory  Letter  A To  Parents  Dear My n a m e i s B a r b a r a R i d i n g a n d I am a p e d i a t r i c nurse. I am a l s o a g r a d u a t e s t u d e n t i n t h e S c h o o l o f N u r s i n g a t The U n i v e r s i t y o f B r i t i s h Columbia, Vancouver. F o r my t h e s i s , I am i n t e r e s t e d i n l e a r n i n g how c h i l d r e n w i t h j u v e n i l e r h e u m a t o i d a r t h r i t i s ( J R A ) experience pain. S p e c i f i c a l l y , I am i n t e r e s t e d i n t h e i r view o f p a i n , t h e meaning i t has f o r them, i t s ' e f f e c t on t h e i r d a i l y l i v e s , and what t h e y f i n d helpful in dealing with pain. Therefore, this l e t t e r i s to request your permission f o r your c h i l d ' s v o l u n t a r y p a r t i c i p a t i o n i n t h i s study. I f you and your c h i l d agree to p a r t i c i p a t e , I w i l l t a l k , w i t h y o u r c h i l d f o r 30 t o 60 m i n u t e s i n y o u r home a t a c o n v e n i e n t t i m e . I would also l i k e to tape o u r i n t e r v i e w so I w i l l n o t have t o w r i t e n o t e s . I n i t i a l l y , y o u r c h i l d w i l l be a s k e d a f e w q u e s t i o n s about h e r s e l f ( h i m s e l f ) and about a r t h r i t i s , then she ( h e ) w i l l be a s k e d t o draw a p i c t u r e o f h e r ( h i s ) a f f e c t e d j o i n t ( s ) and to e x p l a i n t h e drawing. S u b s e q u e n t l y , y o u r c h i l d w i l l be a s k e d t o d e s c r i b e p a i n , how p a i n a f f e c t s h e r ( h i s ) d a i l y l i f e , t h e meaning i t has f o r h e r ( h i m ) and what she ( h e ) f i n d s helpful i n dealing with pain. I f you and your child a g r e e , I may a s k t o t a l k w i t h y o u r c h i l d a g a i n a t a later date. Although I w i l l ask questions, your child's answers w i l l guide the i n t e r v i e w . T h e r e a r e no r i g h t or w r o n g a n s w e r s a s o n l y y o u r c h i l d knows what p a i n i s for her (him). I w i l l terminate the i n t e r v i e w i f your c h i l d appears t i r e d , i s r e l u c t a n t to answer questions, or your c h i l d / y o u ask to withdraw from this study. A l l i n f o r m a t i o n that your c h i l d and you share w i t h me w i l l b e k e p t s t r i c t l y c o n f i d e n t i a l as your i d e n t i t i e s w i l l n e v e r be r e v e a l e d i n a n y way. The t a p e s w i l l be c o d e d by n u m b e r s , n o t by name, a n d w i l l be s h a r e d o n l y w i t h my t h e s i s a d v i s o r s w h o a r e a l s o experienced pediatric nurses. At the completion of this s t u d y , a l l t a p e s w i l l b e e r a s e d b y me. Publications w h i c h r e s u l t f r o m t h i s s t u d y w i l l n o t i n a n y way i d e n t i f y your c h i l d . Your c h i l d w i l l not r e c e i v e any d i r e c t b e n e f i t from t h i s study, but her ( h i s ) participation w i l l help health professionals understand how p a i n a f f e c t s t h e d a i l y l i v e s o f c h i l d r e n w i t h J R A . In a p p r o x i m a t e l y f i v e days I w i l l phone y o u t o a n s w e r a n y q u e s t i o n s a n d t o d i s c u s s f u r t h e r my s t u d y .  110 I would appreciate your c h i l d ' s participation and c o n t r i b u t i o n t o my s t u d y . Please share this letter with your c h i l d . However, i f you and your c h i l d should choose not to p a r t i c i p a t e , y o u r d e c i s i o n w i l l i n no way affect the c a r e and t r e a t m e n t your c h i l d r e c e i v e s or w i l l receive i n the future. Thank you f o r your c o n s i d e r a t i o n of t h i s r e q u e s t . Sincerely yours,  S.  Barbara  Riding,  RN,  BScN  I l l Appendix Parent's  Consent  B Form  I consent/do n o t c o n s e n t t o my c h i l d ' s p a r t i c i p a t i o n i n t h i s D e s c r i p t i v e S t u d y on t h e E x p e r i e n c e o f P a i n f o r C h i l d r e n w i t h J u v e n i l e R h e u m a t o i d A r t h r i t i s t o be c o n d u c t e d by B a r b a r a R i d i n g , a g r a d u a t e s t u d e n t i n The S c h o o l o f N u r s i n g , The U n i v e r s i t y o f B r i t i s h Columbia, Vancouver. I have read the i n t r o d u c t o r y l e t t e r from B a r b a r a as w e l l as d i s c u s s e d h e r s t u d y w i t h h e r . I u n d e r s t a n d the n a t u r e and p u r p o s e of t h i s s t u d y and a l l p r o c e d u r e s r e q u i r e d o f my child. I also understand that: (a) my c h i l d ' s p a r t i c i p a t i o n i s v o l u n t a r y . (b) r e f u s a l t o p a r t i c i p a t e w i l l i n no way affect t h e c a r e a n d t r e a t m e n t w h i c h my child r e c e i v e s or w i l l r e c e i v e i n the future. (c) a m a x i m u m o f t w o i n t e r v i e w s w i t h my child w i l l be c o n d u c t e d i n my h o m e . These i n t e r v i e w s w i l l be a p p r o x i m a t e l y 30 t o 60 minutes i n length. (d) t h e i n t e r v i e w s w i l l be t a p e r e c o r d e d . (e) my c h i l d d o e s n o t h a v e t o a n s w e r any q u e s t i o n s which she(he) does not want to a n s w e r a n d s h e ( h e ) may withdraw from the s t u d y a t any time. (f) Barbara w i l l terminate the i n t e r v i e w i f my c h i l d a p p e a r s tired, i s reluctant to answer q u e s t i o n s , or asks to withdraw from the study. (g) my c h i l d ' s i d e n t i t y w i l l b e k e p t confidential as t a p e s w i l l be c o d e d by n u m b e r s and shared only with Barbara's thesis advisors. (h) at c o m p l e t i o n of t h i s study a l l tapes w i l l be e r a s e d by Barbara. (i) my c h i l d o r I may c o n t a c t B a r b a r a a t any time during t h i s study, i f there are q u e s t i o n s or concerns. Her t e l e p h o n e number i s 261-2456. I acknowledge r e c e i p t of a copy of t h i s consent form and i n t r o d u c t o r y letter. Signature: Child's  Name:  Date : Telephone  Number:  P l e a s e p r o v i d e your a d d r e s s , i f you t h i s s t u d y when i t i s c o m p l e t e d .  wish  a  summary  of  112 Appendix Child's  C  Consent  Form  Barbara R i d i n g , a nurse, has explained t o me that s h e w o u l d l i k e t o t a l k t o me a b o u t w h a t i t i s l i k e t o have a r t h r i t i s and p a i n ( h u r t ) . I understand she would l i k e t o l e a r n how I d e s c r i b e p a i n , what I t h i n k about w h e n I h a v e p a i n , h o w p a i n a f f e c t s my a c t i v i t i e s and what h e l p s when I have pain. I also understand that: ( a ) t h e r e a r e no r i g h t o r w r o n g a n s w e r s . ( b ) I do n o t h a v e t o a n s w e r a n y q u e s t i o n s which I do n o t w a n t t o a n s w e r . (c) I can also ask questions a t any time. .(d) I c a n s t o p o u r t a l k s a t any time. 1  have  agreed  Signature: Date  that  Barbara  may  tape  our  talks.  POSITIONS  HELD: Staff Nurse (Casual), B.C. Children's Hospital, Vancouver, B.C. V P A H  a e r o  cation R e l i e f Nurse Clinician, d i a t r i c Rheumatology Program thritis Society a n d B.C. Children' spital, Vancouver, B.C.  Sessional Lecturer (Teaching Assistant), S c h o o l of N u r s i n g , University of B r i t i s h Columbia, Vancouver, B.C. Nurse Consultant, Lister Hall Student Residence, University of A l b e r t a , Edmonton, Head N u r s e , S t a f f Hospital for Sick Toronto, Ont.  Nurse, Children,  A l t  


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