Anthropology Culture and Medicine: Healers and Healing

Illness  Narrative  Assignment  guidelines   Due  Sunday  April  12,  2015

11:59pm     Background:    Illness  Narrative   Arthur  Kleinman  is  a  doctor  and  anthropologist  who  has  created  a  set  of  questions  to   help  guide  patient  interviews  as  a  way  to  “understand  beliefs  the  patient  holds  about  his   illness,  the  personal  and  social  meaning  he  attaches  to  his  disorder,  his  expectations   about  what  will  happen  to  him  and  what  the  doctor  will  do,  and  his  own  therapeutic   goals.”    Conducting  this  type  of  interview  aims  to  help  guide  the  doctor  in  working  with   the  patient  to  ensure  that  the  care  is  beneficial  and  effective.    Below  this  assignment  I   have  attached  a  summary  PDF  article  about  Kleinman’s  explanatory  model.         Here  are  the  8  questions  suggested  by  Kleinman,  use  them  to  frame  your  interview  with   someone  with  a  chronic  condition.         1.                  What  do  you  think  caused  your  problem?  (For  all  questions  substitute  “problem”

and  “it”  and  “sickness”  with  “diabetes”  or  “cancer”  etc.  )   2.                  Why  do  you  think  it  started  when  it  did?   3.                  What  do  you  think  your  sickness  does  to  you?   4.                  How  severe  is  your  sickness?  Do  you  think  it  will  last  a  long  time,

or  will  it  be  better  soon  in  your  opinion?   5.                  What  are  the  chief  problems  your  sickness  has  caused  for  you?   6.                  What  do  you  fear  most  about  your  sickness?   7.                  What  kind  of  treatment  do  you  think  you  should  receive?   8.                  What  are  the  most  important  results  you  hope  to  get  from

treatment?     A  final  question  I  encourage  you  ask  is  how  this  “illness”  has  impacted  their  families  and   friends—especially  if  they  didn’t  bring  this  up  during  their  narrative.

I  have  included  an  article  briefly  describing  Kleinman’s  model  under  our  “readings   section”  please  read  it  as  an  important  background  piece  to  this  assignment.         Please  review  these  website  for  examples  of  how  providers  and  other  health   professionals  use  illness  narratives  to  understand  how  people  understand  and  explain   their  illness.     1.    Diabetes  Spectrum   http://spectrum.diabetesjournals.org/content/17/4/219.full    Check  out  how  they   modified  Kleiman’s  questions  to  focus  on  diabetes.       2.    Check  the  Kandula  article  on  Canvas  below  this  assignment.

Your  assignment     For  this  assignment  you  will  need  to  identify  someone  you  know  with  a  chronic  illness  to   conduct  a  brief  interview  with  and  write  up  a  summary  and  analysis  of  the  interview.    I   encourage  you  to  identify  someone  very  soon  as  you  will  need  time  to  prepare  your   interview  questions  and  schedule  the  interview.    Talking  to  someone  with  a  chronic   health  condition  will  you  understand  how  someone  with  a  chronic  illness  is  impacted   over  the  course  of  his  or  her  life.    An  illness  narrative  can  help  you  understand  the  larger   issues  outside  of  the  medical  setting  that  impact  the  experience  a  person  has  with  a   chronic  conditions  such  as  diabetes,  cancer,  Alzheimer’s,  multiple  sclerosis,   fibromyalgia,  or  HIV.    You  should  use  and  modify  Kleinman’s  8  questions  to  help  guide   your  interview.    Feel  free  to  add  questions,  but  don’t  get  too  specific,  remember  these   questions  are  meant  to  very  open  ended  to  allow  the  respondent  to  share  their  story.       Feel  free  to  build  off  your  respondent’s  answers  to  ask  follow  up  questions.    For   example,  if  your  respondent  states  that  their  fibromyalgia  began  after  the  moved  to  a   new  city,  you  could  ask  some  follow  up  questions  on  why  that  move  may  have  impacted   the  condition,  how  did  it  impact  their  mental  health,  exercise,  etc.      If  they  think  their   disease  was  caused  by  their  genetic  makeup  ask  them  why  they  think  that.    DO  NOT   judge,  CORRECT  or  EDUCATE  at  any  point,  as  it  may  come  off  as  OFFENSIVE  or   JUDGEMENTAL.  Try  not  to  help  diagnose,  provide  recommendations,  or  guide  what  you   think  they  should  do.    I  know  that  you  are  nurses,  and  you  want  to  help,  but  the  purpose   of  the  activity  is  to  learn  and  get  their  perspective.      You  are  there  to  listen,  to  get  their   STORY.      Also,  the  purpose  of  the  interview  is  not  to  ask  about  a  particular  therapy  or   treatment  and  how  it’s  used,  AGAIN  it  is  to  let  them  tell  their  story.    Let  their  story  guide   your  interview.    Use  Kleinman’s  questions  to  let  them  do  so.    I  encourage  you  to  audio   record  the  interview  and  take  detailed  notes  to  help  you  remember  their  responses.    An   interview  should  last  about  an  hour  and  should  take  place  in  a  private  and  comfortable   location  for  the  respondent.    After  the  interview  you  should  take  time  to  reflect  on  the   experience  and  summarize  your  experience  in  your  paper.    Feel  free  to  get  creative,  for   example  you  can  present  the  paper  as  a  “letter”  to  this  person’s  doctor  about  how  they   view  their  illness,  its  course  and  what  kind  of  treatment  they  would  like  to  get.         Assignment  Guidelines   3-­‐4  pages,  1”  margins,  12point  font.    Double  spaced.         Here  is  an  outline  of  how  to  write  your  paper:

Introduction—Who  did  you  interview  and  why?    Include  a  thesis  statement*     and  make  some  conclusive  observations  about  the  main  theme(s)  of  the   interview.      Please  use  a  pseudonym  (fake  name)  when  writing  this  section.    You   should  let  the  person  you  interview  know  that  the  interview  is  anonymous;  that   you  will  not  be  using  their  real  name  or  providing  any  other  details  that  could   compromise  their  identity  (address,  phone  number  etc.)

Narrative—Describe  their  “narrative”  or  story  related  to  this  illness.  Review  all   the  questions  you  asked  and  summarize  their  responses.    You  should  NOT  write   a  transcript  of  your  interview,  instead  you  should  summarize  the  story  here  and   analyze  their  responses.    You  MAY  use  direct  quotes  in  this  section,  but  the   majority  of  the  content  should  be  in  your  own  words.    Did  they  focus  only  on  the   physical  issues  or  did  they  emphasize  how  it  has  impacted  their  social,  family  or   economic  life?    Etc.    Use  examples  from  the  interview.     Reflection—How  did  the  8  questions  help  you  gain  a  perspective  on  how  this   individual?    What  benefit  did  they/you  gain  in  sharing/writing  this  story?       Conclusion—Summarize  your  paper.    What  role  should  narratives  play  in  our   study  of  health/illness?

*  Important:    Please  research  what  a  THESIS  STATEMENT  is  and  what  it  should  do  for   your  paper,  failure  to  have  a  thesis  statement  will  result  in  an  automatic  5  point   deduction.         READ  THE  ATTACHED  PDF  describing  the  Explanatory  Model  further.

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APPENDIX 2

Kleinman’s Explanatory Model of Illness

Kleinman and associates (1978) in their seminal paper further dis- cuss the importance of the explanatory model: “Eliciting the patient’s (explanatory) model gives the physician knowledge of the beliefs the patient holds about his illness, the personal and social meaning he attaches to his disorder, his expectations about what will happen to him and what the doctor will do, and his own therapeutic goals. Comparison of patient model with the doctor’s model enables the clinician to identify major discrepancies that may cause problems for clinical management. Such comparisons also help the clinician know which aspects of his explanatory model need clearer exposition to patients (and families), and what sort of patient education is most appropriate. And they clarify conflicts not related to different levels of knowledge but different values and interests. Part of the clinical process involves negotiations between these explanatory models, once they have been made explicit.”

Eliciting the Patient’s Explanatory Model of illness through a set of targeted questions shown below is an important tool for facilitat- ing cross-cultural communication, ensuring patient understanding, and identifying areas of conflict that will need to be negotiated. The wording and number of questions used will vary depending on the characteristics of the patient, the problem, and the setting.! What do you think has caused your problem?! Why do you think it started when it did?! What do you think your sickness does to you? How does it work?! How severe is your sickness? Will it have a short or long course?! What kind of treatment do you think you should receive?

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Achieving Cultural Competency: A Case-Based Approach to Training Health Professionals

Edited by L. Hark, H. DeLisser © 2009 Blackwell Publishing Ltd. ISBN: 978-1-405-18072-6

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218 Appendix 2

! What are the most important results you hope to receive from this treatment?! What are the chief problems your sickness has caused for you?! What do you fear most about your sickness?

Adapted from, Kleinman A., Eisenberg L., Good B. Culture, illness, and care: clinical lessons from anthropological and cross-cultural research. Ann Intern Med 1978;88:251–88.