Academic  year  2015-­‐2016  

     “Wait,  Let  Me  Finish!”    An  Exploration  of  Experiences  of  Adults  who  Stammer  in  Ghana  

                           

Marianne  Debrouwere    

Thesis  submitted  in  partial  fulfillment  of  completing  the  degree  of  master  in  pedagogische  wetenschappen,  specialization  orthopedagogiek  

 Promotor:  Dr.  Elisabeth  De  Schauwer  

   

 

                               

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Foreword    This   research   explores   the   lived   experiences   of   adults   who   stammer   in   Ghana.  Interest   in   this   phenomenon   was   triggered   during   the   period   of   completing   an  internship  in  Ghana,  through  frequently  observing  persons  with  a  stammer  (PWS)  in  public  places,  at  university  or  in  the  media.  Furthermore,  these  contexts  and  lack  of  observable   reactions   gave   the   impression   of   PWS   being   accepted   and   included   in  local   society.   The   frequency   prompted   to   assume   a   high   prevalence   of   PWS   in  Ghana,   an   assumption   shared   by   many   people   I   met   in   Ghana.   The   research   is  shaped  by  the  aspiration  for  it  to  be  meaningful  to  the  people  contributing  to  it  and  to  the  context  where  it  is  conducted.  During  an  initial  search  for  information,  contact  was  made  with  Elias  Preku,  the  founder  of  Ghana  Stammering  Association  (GSA)  and  Nana  Akua  Owusu,  the  guiding  speech  therapist.  They  clearly  pronounced  the  need  for  research  and  raising  awareness  on  stammering  in  Ghana.      Stammering   will   be   used   in   this   study   as   it   is   the   most   commonly   used   term   in  Ghana,  as  in  Ghana  Stammering  association,  instead  of  ‘stuttering’,  which  is  the  term  accepted   in   published   research.   Stammering   will   be   used   in   general,   covering  different  types  of  the  phenomenon  such  as  repeating  syllable  and  words  or  blocking  of   sounds.   Further   stammering   will   capture   both   overt   (speech   dysfluency)   and  covert   (feelings,   coping   attitudes)   experiences   of   stammering.   Therefore,   ‘speech  dysfluency’  (Guitar,  1985)  will  be  used  only  for  the  observable  feature  of  stammering  like   repeating   or   blocking   speech.   ‘Managing’   of   stammering   instead   of   ‘recovery’  will  be  used  as  presented  in  Plexico  et  al.  (2004).  Following  their  view,  managing  is  an  on-­‐going  process  where  strategies  are  applied  to  maintain  higher  speech  fluency  rather  than  complete  eradication  of  stammering.  Therefore,  the  goal  of  successfully  managing   stammering   is   not   complete   fluency  but   for   the   stammer  not   to   control  participation  or  life  choices  limited  by  fear  related  to  stammering.      With  guidance  of   the  promoter  of   this   research  and  closely  working   together  with  GSA  and  Nana  Akua  Owusu,   a  qualitative   research  was   set  up  and  adapted   to   the  context.   Experiences   related   to   stammering   are   gathered   in   the   context   of  education,   family,   social   and   professional   life.   The   literature   and   revealed   themes  discussed  in  this  paper  aim  to  support  the  participants  of  this  study,  other  PWS  and  their   environment.   The   study   broadens   the   understanding   of   stammering   and  inspires  or  demonstrates  possibilities  with  experiences  of   support  or  managing   the  stammer.  The   study  additionally   aspires   to   initiate   literature  about   stammering   composed   in  the   context   of   Ghana   to   stimulate   further   research   such   as   establishing   the  prevalence  of  PWS  and  inform  policy  makers  of  the  need  for  support  for  PWS.      

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Acknowledgements      This  work  can  only  be  completed  with  thanking  every  person  who  made  it  possible.      First  I  want  to  thank  the  participants  greatly  for  their  given  trust,  openness  in  sharing  their   story,   unconditional   time  and  effort   invested   in   this  project.   I   hope   in   return  this  work  can  be  of  meaning  to  them  and  encourage  and  inspire  many  others.  It  has  for  sure  already  taught  me  a  lot.      I  want  to  thank  Elias  Apreko,   founder  of  Ghana  Stammering  Association,  and  Nana  Akua  Owusu,  a  speech  therapist,  whose  devotion  and  motivation  to  support  PWS  in  Ghana  is  hope  giving,  for  connecting  me  to  these  interesting  people  and  guiding  me  through  this  unknown  field.  Without  them  this  research  would  not  have  been  viable.        I  want  to  thank  my  promoter,  Dr.  Elisabeth  De  Schauwer,  for  her  flexibility,  trust  and  patience  allowing  me  to  be  myself.  Her   insight  and  constructive   feedback  enriched  this  work  and  kept  me  from  getting  lost.   I  could  not  have  done  this  with  any  other  promoter.        Unique   thanks   to   my   mother   An   Notebaert   for   the   best   learning   opportunity   by  observing   and   experiencing   the   endless   support   of   the   natural   ‘orthopedagoog’   I  want  to  try  to  become.  Furthermore,  I  am  thankful  for  her  reading  and  correcting  my  work.   I   am  grateful   for  my   sister,   partner   and  her   daughter   for   giving  me   a   home  when  I  am  in  Belgium.        I  have  exceptional  appreciation  for  my  friends  from  university  and  ‘Steiners’  for  the  deepest   friendship   and   their   irreplaceable   mental   and   practical   support   while  making  this  work.  Together  we  learn  so  much  more:  Fien,  Karen,  Flo,  Hannah,  Isaur,  Matthijs,   Diana   and   Ismail.   Special   thanks   to   family   and   friends   in   Ghana   for   the  support,   hosting   and   relaxing   together:   Alice,   Natalie,   Anke,   Kirsten,   Flo,   Kate   and  Mercy.   Thanks   to  my   salsa   friends   for   dancing   together,   which   kept  me   sane   and  healthy.        And   incomparable   “thank   you”   to   Patrick   for   being   my   partner   in   everything,   in  particular   for   the  numerous  discussions   about   stammering,   reading   and   correcting  my  work.  I  am  infinitively  grateful  for  giving  me  the  confidence  and  the  continuous  mental  and  practical  support  with  patience  to  complete.          

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Abstract      All   over   the  world,   there   are   persons  who   stammer   (PWS).   The   phenomenon   has  been   researched   for   decades   with   different   approaches   and   from   various  perspectives.  However,  this  is  not  the  case  in  Ghana  or  in  the  wider  context  of  West  Africa.  This  study  explored  the  lived  experiences  of  adults  who  stammer  in  Ghana  in  order  to  broaden  the  understanding  of  the  phenomenon,  reveal  the  current  level  of  awareness,  identify  what  is  supportive  and  inform  policy  to  incorporate  the  needs  of  PWS.   In   total,   seventeen   qualitative   interviews   were   conducted   with   PWS   (3  females,  14  males)   in  Accra  and  Kumasi,  exploring  their  experiences   in  educational  and   professional   life   besides   family   and   social   contexts.   After   transcribing   the  interviews,  a  systematic  thematic  analysis  was  applied  to  it.      The  major  themes  and  subthemes  reveal  both  straining  and  supportive  reactions  of  people   surrounding   PWS,   experienced   emotions,   restricted   participations   and  intrinsic   supportive   factors.   The   personal   stories   of   participants   demonstrate   the  complex   nature   of   the   stammering   experience.   Straining   reactions   can   lead   to  difficult   emotions   and   restricted   participations.   This   process   can   be   intensified   or  countered   by   personality.   It   can   further   be   countered   by   supportive   reactions,  developing   talents   and   actions   undertaken   to   deal   with   stammering.   The   findings  also   show  different  existing  misconceptions  with  PWS  and   the  people   surrounding  them.   There   is   lack   of   awareness   of   the   impact   of   reactions   on   the   PWS,   the  presence  of  endured  emotions,  restricted  participation  and  the  fluctuating  nature  of  stammering.    The  study  shows  that  support  can  come  from  different  directions  such  as   family,   friends,   teachers   and   religion.   It   can   also   come   from   within   the   PWS  through  personality,  talents  and  actions  undertaken  actions  to  manage  the  stammer.  However,   these   potential   supportive   elements   still   appear   to   be   limited,   in   this  context,  when  compared  to  the  described  challenges.      This  implies  there  is  the  need  to  break  the  silence  surrounding  stammering.  PWS  in  Ghana   can   make   a   change   by   coming   together,   support   each   other   and   raise  awareness   on   stammering   for   others   who   stammer   as   well   as   people   in   their  environment.   Further,   there   is   the   need   for   available   and   affordable   professional  support   and   increased  awareness  on   stammering   for   various  professionals   such  as  teachers,   social   workers   and   medical   doctors   amongst   others.   Therefore,   barriers  experienced  by  PWS  can  be  tackled  to  increase  their  chances  in  society  to  reach  and  offer  their  full  potential.      Keywords:   Stammering,   Ghana,   qualitative   research,   lived   experiences,   thematic  analysis  PWS    

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Table  of  Contents    

Foreword  ..................................................................................................................................................  i  Acknowledgements  ...........................................................................................................................  ii  Abstract  ..................................................................................................................................................  iii  Table  of  Contents  ...............................................................................................................................  iv    1.  Introduction  .....................................................................................................................................  1  1.1  Stammering  in  general  ........................................................................................................................  1  1.2  Experiences  of  Persons  Who  Stammer  (PWS)  .........................................................................  2  

1.2.1  Psychosocial  experiences  ............................................................................................................  3  1.2.1.1  Anxiety  ......................................................................................................................................................  3  1.2.1.2  Avoiding  ...................................................................................................................................................  4  1.2.1.3  Self  esteem  ..............................................................................................................................................  5  

1.2.2  Barriers  at  School  ...........................................................................................................................  6  1.2.2.1  Performance  ...........................................................................................................................................  6  1.2.2.2  Teasing  and  Bullying  ...........................................................................................................................  7  

1.2.3  Barriers  at  Work  .............................................................................................................................  7  1.2.3.1  Career  choice  ..........................................................................................................................................  8  1.2.3.2  Promotion  ................................................................................................................................................  9  

1.2.4  Stammering  and  social  relationships  ......................................................................................  9  1.2.4.1  Social  life  ..................................................................................................................................................  9  1.2.4.2  Stigma  .....................................................................................................................................................  10  1.2.4.3  Support  social  network  ..................................................................................................................  11  

1.2.5  Treatment  -­‐  Management  .........................................................................................................  12  1.2.5.1  Therapy  .................................................................................................................................................  12  1.2.5.2  Self-­‐  Management  ..............................................................................................................................  13  

2.  Methodology  ..................................................................................................................................  15  2.1  Problem  statement  and  research  questions  ............................................................................  15  2.2  Research  method  and  procedure  .................................................................................................  16  

2.2.1  Sampling  size  and  strategy  ........................................................................................................  16  2.2.3  Qualitative  interviewing  ............................................................................................................  18  2.2.4  Thematic  analysis  .........................................................................................................................  20  2.2.5  Active  role  of  the  qualitative  researcher  .............................................................................  23  

2.3  Validity  -­‐  Trustworthiness  ..............................................................................................................  24  2.3.1  Credibility  ........................................................................................................................................  25  2.3.2  Transferability  ...............................................................................................................................  26  2.3.3  Dependability  ................................................................................................................................  26  2.3.4  Confirmability  ................................................................................................................................  27  

3.  Results  ..............................................................................................................................................  28  3.1  Straining  and  supportive  reactions  to  speech  challenges  .................................................  28  

3.1.1  Stammering  explained  ................................................................................................................  28  3.1.2  Unfavourable  reactions:  I  stammer  -­‐  how  do  you  react?  ...............................................  29  3.1.3  Support  ............................................................................................................................................  32  

3.2  Stammering  contains  more  than  speech  challenges  ............................................................  34  3.2.1  Feelings  ............................................................................................................................................  34  3.2.2  Restricted  participation  .............................................................................................................  36  

3.3  Who  am  I  and  what  can  I  do?  .........................................................................................................  38  3.3.1  Much  more  besides  stammering!  ..........................................................................................  38  

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3.3.2  How  to  deal  with  stammering?  ...............................................................................................  39  3.3.3  Positive  influence:  not  all  bad  ..................................................................................................  42  

4.  Discussion  .......................................................................................................................................  43  4.1  Discussion  of  results  ..........................................................................................................................  43  4.2  Implications  of  the  results  ...............................................................................................................  49  4.3  Limitations  and  strengths  of  this  study  and  suggestions  for  further  research  ........  51  

5.  Conclusion  ......................................................................................................................................  55    Bibliography  .......................................................................................................................................  57  Nederlandse  samenvatting  ...........................................................................................................  64  Appendix  ..............................................................................................................................................  71  Annex  1:  Call  to  participate  in  qualitative  research  around  stammering  ..........................  72  Annex  2:  Informed  consent  ....................................................................................................................  73  Annex  3:  Questions  for  semi-­‐structured  interviews  ...................................................................  74  

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1.  Introduction  

1.1  Stammering  in  general      Stammering   is   a   speech   challenge   where   a   person   experiences   involuntary  repetitions,   prolongation   of   syllables   or   blocking   of   sounds   (Bloodstein,   1995;  Bloodstein  &  Ratner,  2008;  Guitar,  2013).  There  are  several  subtypes  of  stammering  (Yairi,  2007).  How  the  stammer  expresses  itself  can  be  different  from  one  person  to  another.  However  there  should  be  no  confusion  with  some  dysfluency  that  can  occur  in  every  person’s  speech  (Guitar,  2013).  There  are   two  main   types  of   stammering  based  on   the  onset  of   the  stammer.  The  first   is   the   common   developmental   stammering   that   occurs   from   two   years   and  before  six  years  old   (Bloodstein,  1995;  Bloodstein  &  Ratner,  2008;  Mansson,  2000;  Guitar,   2013).   It   is  more   common   amongst  males   than   females   (Bloodstein,   1995;  Guitar,  2013)  and  elevated  levels  of  heredity  are  observed  (Dworzynski,  et  al,  2007;  Rautakoski  et  al,  2012).  For  children  spontaneous  recovery  is  common  (Yairi  &  Ambrose,  1999;  Guitar,  2013).  For  75  percent  of  the  adolescents  who  stammer,  the  symptoms  will  stay  away  (Yairi  &  Ambrose,  1999;  Guitar,  2013).  This  will  occur  more  often  with  females  who  have  a  stammer  (Andrews  &  Craig,  1988).  In  contrast,  recovery  in  adulthood  is  expected  to  be  rare  (Anderson  &  Felsenfeld,  2003),  resulting  in  an  estimated  prevalence  rate  of  1  percent  (Guitar,  2013)  varying  over  age  (Craig  et  al.,  2002).    The  second,  however  rare,  type  is  acquired  stammering  when  the  onset  takes  place  in   adulthood.   The   stammer   occurs   because   of   secondary   causes   like   medication,  brain  trauma  or  stroke  (Guitar,  2013;  Ward,  2006).    The   cause   of   stammering   is   not   yet   fully   understood   (Packman,   2012).   However,  brain   research   shows  evidence   for   a   necessary  neuro-­‐physiological   factor   before   a  stammer  can  occur  (Chang  et  al.,  2011;  Cykowski  et  al,  2010;  Guitar,  2013).  Though,  the   neurologic   factor   alone   is   not   enough   to   cause   stammering   (Packman,   2012).  Other   research   indicates   that   for   people   who   stammer,   there   could   be   a  complication   of   the   neuronal   transmission   in   the   white   matter   of   the   brain.  Furthermore   research   located   the   source   of   stammering   in   the   genes   (Lan   et   al.,  2009;  Petrin  et  al.,  2010).  Most  recent  research  supports  that  a  mutation  in  a  gene,  situates  persistent  stammering  under  neurological  disorders  (Raza  et  al.,  2015).    Causal   theories   outline   the   complexity   of   stammering   (Bloodstein&   Bernstein  Ratner,   2008).   They   described   stammering   as   a   multifactorial   process   where   the  interaction  of   several   factors  will  define   if,  how  and  when   the  stammer  will  occur.  These   factors   are   neurophysiological,   psychological,   social   and   linguistic   (Guitar,  2013).  The  causal  theories  differ  in  whether  they  explain  the  cause  of  stammering  in  

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general  or  the  cause  when  a  moment  of  repeating  syllables  or  word  blocks  occurs.    Some   of   the   theories   will   cover   both   (Bloodstein   &   Bernstein   Ratner,   2008).   For  example   the   Demands   and   Capacities   model   (Starkweather,   &Gottwal,   2000),   the  Dynamic  Multifactorial  model  (Smith  &  Kelly,  1997  cited  in  Packman,  2012)  and  the  Packman  and  Attanasio  3-­‐factor  causal  model  of  moments  of  stuttering  (P&A  model)  (Packman,   2012).   The   P&A  model   describes   three   causal   factors.   First,   a   deficit   in  how   spoken   language   is   processed   neurologically.   Second,   features   of   spoken  language  and  third  modulating   (unique   intrinsic)   factors  as   in  psychological  arousal  and   availability   of   cognitive   resources   both   influenced   by   for   example   individual  experiences,   anxiety,   fear   of   negative   evaluation   and   stuttering   severity   further  influenced  by  individual  differences  in  emotional  reactivity  and  resilience.    The   impact   of   having   a   stammer   can   go   far   beyond   the   observable   speech  disfluencies  (Mulcahy  et  al,  2008).  It  goes  together  with  a  variety  of  non-­‐observable  psychological   and   social   consequences   (Iverach   et   al.,   2009;   Tran   et   al.,   2011),  affecting  people’s  emotional  and  mental  health  negatively   (Bloodstein  et  al.,  2008;  Menzies   et   al.,   1999).   Therefor,   to   estimate   the   severity   of   the   impact,   it   can’t   be  directly   related   to   the   frequency   of   the   stammer   (Erickson   &   Block,   2013).   Other  consequences  can  have  a  behavioral  nature  like  facial  movements,  tremors  and  eye  blinks  (Guitar,  2013)  or  larger  movements  like  tapping  or  stamping  of  feet.  Having  a  stammer  can  affect  many  aspects  of  a  person’s  life  (Bloodstein  et  al.,  2008).  In  a  way   that   literature  describes   the   impact  of   stammering  as  disabling   (Yaruss  &  Quesal,  2004).  

1.2  Experiences  of  Persons  Who  Stammer  (PWS)    Experiences  of  PWS  are  collected  through  multiple  qualitative  researches.  The  main  experiences   related   to   stammering   are   the   undesirable   aspects   where   only   rarely  positive   experiences   are   noted.   For   example   suffering,   shame,   and   stigma   are  commonly   shared  experiences  by   the  people  who   stammer   (Crichton-­‐Smith,   2002;  Corcoran  &   Stewart,   1998;   Plexico   et   al.,   2004),  which   can   lead   to   frustration   and  anger   (Beilbya  et   al.,   2012;   Plexico  et   al.,   2009).   For   the  participants   in   a   study  by  Corcoran  and  Stewart   (1998),   the  stammer   is  experienced  as  beyond  their  control,  resulting   in   feelings   of   helplessness.   Some   PWS   describe   strong   feelings   like  hopelessness  and  unhappiness  to  feelings  of  low  self  worth  and  depression  (Plexico  et  al.,  2009).      The   core   feature   of   stammering   is   dysfluency   in   speaking.   However,   most  experiences   shared   by   participants   in   qualitative   research   are   the   experiences  beyond   the   overt   symptoms,   the   not   observable   feelings   and   emotions   within  (Plexico   et   al.,   2004;   Yaruss,   2010;   Kathard,   2001).   This   could   be   described   as   the  

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non-­‐visible   part   of   the   iceberg   analogy   of   Sheehan   (1970)   including   interpersonal  and  psychosocial  experiences  related  to  having  a  stammer  (Beilbya  et  al.,  2012).  For  example,   participants   in   Plexico   et   al.   (2004)   describe   experiencing   high   levels   of  stress   in   anticipation   of   stammering   at   the   moment   the   stammer   occurs   and  afterwards.  As  a  consequence  PWS  could  be  at  greater  risk  of  being  fatigued  (Craig  et  al,  2009;  Plexico  et  al,  2009).    In  line  with  this,  the  severity  of  speech  dysfluency  is  reported  to  vary  depending  on  the  context,  who  they  are  talking  to,  how  they  feel  physically   and   emotionally   and   the   stress   experienced   at   the   moment   of   talking  (Klompas  &  Ross,  2004).    Even   when   the   dysfluency   has   improved,   these   covert   feelings   can   continue   (St.  Louis,  2001  cited  in  Flynna  &  St.  Louis,  2011).    

1.2.1  Psychosocial  experiences    The  following  commonly  shared  psychosocial  experiences  by  PWS  will  be  described  more  at  length:  anxiety,  avoiding  and  self-­‐esteem.      

1.2.1.1  Anxiety    Research  from  25  years  ago  until  more  recent  research,  indicates  that  anxiety  plays  a  role   in   stammering   (Bloodstein,  1995;  Miller  &  Watson,  1992).   It   is   seen  as  one  of  the   correlating   factors   with   stammering   (Menzies   et   al,   1999)   and   similar   across  cultures  (Tellis  &  Tellis,  2003).  Some  PWS  develop   social   anxiety   (Craig   et   al.,   2011;  Messenger   et   al.,   2004)  until  half  of  the  adults  who  stammer  could  receive  a  diagnosis  of  social  phobia  (Iverach  et  al.,  2009;  Kraaimaat  et  al.,  2002;  Stein  et  al.,  1996).  These  statements  become  more  nuanced  when  explained  that  adults  who  stammer  are  not  more  anxious  in  general  than   adults   who   don’t   stammer.   However,   the   first   experience   higher   levels   of  anxiety   limited   to   speaking   situations   and   also   as   a   reaction   on  multiple   negative  communication   experiences   they   have   encountered   (Daniels   et   al.,   2012;  Miller  &  Watson,  1992).    Adolescents  who  stammer  consider  themselves  to  be  less  competent  and  experience  more   anxiety   in   communicating,   more   particular   in   group   discussions   and  interpersonal  conversations  (Blood  et  al.,  2001).  The  majority  of  participants   in  the  research   of   Erickson   and   Block   (2013)   confirmed   also   experiencing   anxiety   during  speaking  in  public  or  in  meetings  and  almost  half  of  them  while  talking  in  groups  and  interpersonal  conversations.  The  specific  difficulty  of  these  self-­‐perceptions  arises  in  combination  with   the   typical   challenges   of   puberty,   being   the   physical,   social   and  emotional   development   together   with   peer   pressure   to   fit   in   and   be   accepted  (Heaven,  2001  cited  in  O’Brian  et  al.,  2011).    

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In  research  of  Bajaj  et  al.   (2014)  only   limited  part  of  the  participants  who  stammer  experience  fear  and  anxiety  in  communication  situations.  In  the  research  of  Beilbya  et  al.  (2012)  it  are  the  participants  who  report  a  pronounced  impact  of  stammering  on  their  life  that  also  experience  social  anxiety.      Fear   is   experienced   in   anticipation   of   the   reaction   of   the   listener   (Plexico   et   al.,  2009).  Possibly  instigated  by  previous  negative  reactions  of  others  when  stammering  occurred  (Beilbya  et  al.,  2012)  that  resulted  in  feelings  of  embarrassment  or  shame  (Corcoran  &  Stewart,  1998;  Daniels  et  al.,  2006;  Crichton-­‐Smith,  2002)  and  more  in  particular   because   of   negative   social   experiences   throughout   the   years   in   school  (O’Brian,  2011).  Experiences   described   by   the   participants   in   the   research   of   Plexico   et   al.   (2009)  shed  more  light  on  specific  factors  that  play  a  role  in  the  social  fear  or  anxiety.  These  can  be  divided   into  features  related  to  the   listeners  and  features  of   the  situational  context.    Fear  and  anxiety  is  more  experienced  with  unknown  listeners  than  with  friends  and  family,   because   it   is   more   difficult   to   foresee   their   reaction   on   stammering.   The  reaction  could  be  impatience  or  forming  a  particular  first  impression.  The  degree  of  fear   depends   on   how   much   is   cared   about   what   the   other   person   thinks.   The  participants   in   this   study   assumed   listeners   would   perceive   them   as   unsuccessful  communicators  or   less   intelligent.  Features   like  appearance  and  age  of   the   listener  influence   the   expectation   of   how   the   listener   will   react   on   the   stammer.   Most  participants   in   the   research   of   Crichton-­‐Smith   (2002)   confirm   the   above   by  describing   to   feel  more   comfortable   stammering   at   home,  with   a   friend   and   their  therapist  rather  than  at  work.  Contexts  that  are  more  formal  for  example  at  work,  in  school  or  in  an  interview  can  elevate  the  level  of  anxiety.  Also  the  treatment  setting  is  been  described  as  influencing  the  speech.  Social  situations  are  perceived  as  more  demanding  because  of  more   listeners  at   the  same  time  plus   the  higher   risk  of  one  person  being   impatient  and  take  over  the  speaking  role  when  the  stammer  occurs.  Time   pressure   to   speak   or   answer   can   be   a   trigger   for   many   participants   to  experience  stress  or  even  panic  (Plexico  et  al.,  2009).  Another  situation  that  is  often  perceived   as   stressful   and   fearful   is   speaking   on   the   phone   because   both   parties  can’t  see  one  another  and  be  aware  the  person  is  stammering.    However,  the  level  of  anxiety  experienced  with  each  of  the  above  factors  mentioned  differs  from  person  to  person  depending  on  everyone’s  unique  history  (Plexico  et  al.,  2009).  

1.2.1.2  Avoiding    The   negative   experiences   and   the   social   anxiety,   described   earlier,   causes   PWS   to  attempt   to   conceal   their   stammer   through   several   ways   of   avoidance   (Crichton-­‐

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Smith,  2002;  Plexico  et  al.,  2009;  Beilbya  et  al.,  2012).  This  is  to  give  the  impression  of   fluency   (Plexico,   et   al.,   2009)   or   to   prevent   the   listener   from   realizing   that   the  person  has  a  stammer  (Crichton-­‐Smith,  2002).  The  avoidance  response  is  described  as  natural  for  any  person  who  wants  to  prevent  to  be  rejected  or  stereotyped  by  the  listener  who  notices  the  stammer  (Bloodstein,  1995;  Sheehan,  1970  cited  in  Blood  et  al.,  2003)  or  to  protect  the  self  and  even  the  listener  from  uncomfortable  situations  or   shame   (Plexico   et   al.,   2009).   Participants   in   Plexico   et   al.   (2009)   report   that  avoidance  offers  moments  of  relief,  allows  distancing  from  the  difficulties  related  to  stammering  and  gain  control  over  the  involuntary  stammer.      PWS   can   avoid   words,   people   or   social   situations   where   it’s   likely   that   they   will  stammer  (Corcoran  &  Stewart,  1998;  Beilbya  et  al.,  2012;  Guitar,  1985).  In  Plexico  et  al.  (2009),  participants  describe  word  substitution  or  not  participate  in  conversations  as  most   frequently   used   to   avoid   the   stammer   from   occurring   and   to   contain   the  fluent  speech  what  makes  interacting  easier  (Plexico  et  al.,  2009).        It’s   worth   noticing   the   difference   in   reporting   avoiding   during   adolescence   by  adolescents   at   the   moment   of   reporting   or   adults   who   stammer   in   retrospective  studies.  The  majority  of  adolescents  report  barely  avoiding  (Blood  et  al.,  2003)  while  adults  looking  back,  describe  avoiding  as  a  major  theme  of  coping  strategies  (Daniels  et  al.,  2012).      Participants   in   Plexico   et   al.   (2009)   describe   consequences   of   avoiding,   like  word-­‐substitution,   leading   to   miscommunication   or   compromising   the   clarity   of   the  message.  This  was   still   prefered  over   revealing   the   stammer.  A  next   step  could  be  restricting   speaking   options   leading   towards   the   risk   of   isolation   and   engaging   in  solitary   activitieswhich   could   lead   to   social   withdrawal   (Blood   et   al.,   2001).   At   a  certain   point   these   strategies   can   be   present   in   every   aspect   of   life,   demanding  excessive   cognitive   and   emotional   energy.   Also   after   years,   the   effectiveness   of  these   methods   reduces   and   are   not   perceived   as   a   solution   anymore   with   both  causing   diminished  well-­‐being   or   quality   of   life   (Plexico   et   al.,   2009).   At   this   point  being   open   about   having   a   stammer   can   lift   the   burden   of   hiding   (Breitenfeldt   &  Lorenz,   1999   cited   in   Klompas  &  Ross,   2004).   In   addition   Collins   and  Blood   (1990)  discovered  that  when  people  who  have  a  stammer  recognize  this,  they  are  perceived  more  positive  by  others  than  those  who  don’t  acknowledge  their  stammer  (cited  in  Klein  &  Hood,  2004).    

1.2.1.3  Self  esteem      In  different  qualitative  research,  participants  report  that  stammering  influences  their  self-­‐esteem   negatively   (Klompas   &   Ross,   2004).   Several   described   negative  

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stereotypes  of  themselves  (Craig  et  al.,  2003;  MacKinnon  et  al.,  2007).  For  example,  stammering  being  described  as  a  shameful  component  of  the  self-­‐concept  (Plexico  et  al.,  2009).  Research  confirms  stammering  severity  having  an  adverse  effect  on  self-­‐esteem   of   adolescents   who   stammer.   More   in   particular   are   negative  communication  attitudes  (Adriaensens  et  al.,  2015).  Even  though  it’s  not  possible  to  assign   cause   to   correlation,   Craig   (2009)   emphasizes   that   people   with   a   severe  stammer   almost   have   the   double   risk   of   diminished   emotional   functioning   in  contrast  with  people  who  have  a  milder  stammer.    In   contradiction,   adolescents   who   stammer   repeatedly   reported   positive-­‐esteem  (Blood  et   al.,   2003).  Also   school-­‐aged   children  who  have  a   stammer  were   situated  within  the  normative  range  for  self-­‐esteem  (Yovetich  et  al.,  2000).  On  the  other  hand  McCrosky   et   al.,   (1977)   stated   that   because   others   have   negative   perceptions,  people  adapt   their  self-­‐concept  over   time  so   it  meets   these  views   (cited   in  Klein  &  Hood,  2004).  

1.2.2  Barriers  at  School      In  the  educational  context  from  kindergarten  until  university,  verbal  communication  is  required  in  multiple  activities  like  reading  aloud,  asking  and  answering  questions,  group  discussions  or  giving  a  presentation.  Moreover,  communication  is  essential  in  developing  social  skills  (O’Brian,  2011).    

1.2.2.1  Performance    Blood  et  al.  (2001)  describe  adolescent’s  possessing  features  related  to  stammering,  such   as   higher   anxiety   in   several   communicational   settings,   correlates  with  overall  poorer  academic  performance.  More  recent  research  reported  a  significant   inverse  association   between   having   a   more   severe   stammer   and   educational  accomplishments   without   claiming   any   causal   relationship   (O’Brian   et   al.,   2011).  Qualitative   research   confirms   these   findings   where   PWS   recall   to   struggle   with  concentrating  and   learning  because  of   losing  energy  on  thinking  about  stammering  and  how  to  manage  it  (Daniels  et  al.,  2012).  In  Klompas  &  Ross  (2004)  the  majority  of  the  participants  believe   that   their  academic  performance  was  constrained  because  of  their  stammer  due  to  difficulties  with  oral  presentations,  unawareness  of  teachers  and  teasing  by  peers.  The   research   of   Tran   et   al.   (2011)   could   not   confirm   this   reverse   association   of  stammering  on  educational  attainment.  Additionally,  the  results  of  McAllister  et  al.  (2012)   do   not   show   PWS   to   have   disadvantages   in   education   and   besides   this,  adolescents  who  stammer  are  reported  not  to  leave  school  sooner  compared  those  who  don’t   stammer   (McAllister   et   al.,   2012).   Furthermore,  McAllister   et   al.   (2012)  sums  up  multiple  different  factors  besides  stammering  that  could  define  the  level  of  education  for  example  socio-­‐economic  factors  and  level  of  education  of  the  parents.  

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1.2.2.2  Teasing  and  Bullying    Being   teased   or   bullied   in   primary   school   is   something   that   can   happen   more   to  children  who  stammer  than  to  their  peers  (Langevin  et  al.,  1998;  Davis  et  al.,  2002).  They   are   also  perceived  more  negatively   (Langevin   et   al.,   2009;  Davis   et   al.,   2002;  Ezrati-­‐Vinacour   et   al.,   2001),   rejected   and   challenged   in   creating   friendships   with  schoolmates  (Davis  et  al.,  2002).    Also  for  adolescents  who  stammer  it  has  been  confirmed  that  the  risk  is  higher  to  be  teased   or   bullied   rather   than   their   non   stammering   peers   (Blood   &   Blood,   2004;  Langevin,  2009;  Erickson  &  Block,  2013;  McAllister  et  al.,  2012).    Whether  it  takes  place  in  primary  or  secondary,  several  researches  have  described  if  teasing  or  bullying  happens,   together  with  other   challenges   in   social   interaction,   it  can   influence   every   day   school-­‐life   of   school-­‐age   children   or   adolescents   who  stammer  (Blood  &  Blood,  2004;  Davis  et  al.,  2002;  Langevin  et  al.,  1998;  Murphy  &  Quesal,  2002;  Murphy  et  al.,  2007a).  This  could  encourage  avoiding  to  participating  (Daniels   et   al.,   2012;   Corcoran  &   Stewart,   1998;   Crichton-­‐Smith,   2002;   Erickson  &  Block,   2013).   For   example   avoiding   to   ask   and   answer   questions   or   skip   classes  (Klompas   &   Ross,   2004;   O’Brian,   2011;   Daniels   et   al.,   2012),   which   may   hinder  academic  achievement  (Klompas  &  Ross,  2004;  Crichton-­‐Smith,  2002;  Daniels  et  al.,  2012;   Erickson   &   Block,   2013).   This   impact   may   possibly   continue   once   entering  adulthood  (McAllister  et  al.,  2013;  Daniels  et  al.,  2012).  Acceptance   and   support   from   other   peers   or   parents   can   counter   the   impact   of  teasing  and  bullying  considerably  (Hearne  et  al.,  2008:  Erickson  &  Block,  2013),   like  having   someone   to   ‘stick   up   for’   you   (Blood   et   al.,   2003).   Erickson  &  Block   (2013)  confirmed   the   positive   evolution   of   the  majority   of   children   in  Australia   informing  their  parents  about  teasing  and  bullying.  However,  the  children  who  stammer  would  still  have  preferred  more  to  be  done  about  it.    

1.2.3  Barriers  at  Work    Professional  occupation  can  define  living  standards  and  fulfillment  with  life.  Studies  confirm   the   economic   advantages   and   the   opportunity   to   build   up   support   in  psychosocial   wellbeing   through   obtaining   a   job.   This   is   through   the   ability   to   be  independent,   realize   goals   and   receive   recognition   in   ones   work   (Lent   &   Brown,  2006).      Several   qualitative   researches,   have   described   the   impact   of   stammering   on  employment  (Blumgart  et  al.,  2010a,  2010b;  Peters  &  Starkweather,  1989;  Crichton-­‐Smith,  2002;  Bricker-­‐Katza  et  al.,  2013;  Klein  &  Hood,  2004;  Klompas  &  Ross,  2004).  Some  describe  the  negative  impact  on  employability  and  the  ability  to  demonstrate  fully   their  competences   (Klein  &  Hood,  2004;  Bricker-­‐Katza  et  al.,  2013;  Klompas  &  

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Ross,   2004).   More   in   particular   when   a   person   has   a   more   severe   stammer   or  experiences  a  day  the  stammer  is  more  prominent,  the  impact  is  perceived  greater  on  the  chance  to  be  hired,   job  performance  or  well  being  at  work  (Bricker-­‐Katza  et  al.,   2013;   Klein   &   Hood,   2004).   Besides   this   the   educational   level   of   PWS   can  influence   whether   they   perceive   the   stammer   to   create   barriers   at   work   (Klein   &  Hood,  2004).  Fortunately  only  a  few  indicate  being  mocked  at  work  (Klein  &  Hood,  2004).      More  specifically,  participants   in  Bricker-­‐Katza  et  al.   (2013)  describe   the   impact  on  communication   at  work.   They   feel   the   urge   to   be  more   fluent   in   assignments   like  phone  calls,  presentations,  meetings  and  talking  with  clientele.  Frustration  arises  for  example   when   a   spontaneous   verbal   response   or   humorous   contribution   is  interrupted   by   the   stammer.   Other   difficulties   are   when   the   person   loses   an  opportune  moment  to  talk  or  when  the  stammer  distracts  the  listener.  Participant’s  mention  that  the  concentration  demanded  to  avoid  stammering  limits  their  ability  to  show   their   true   skills   at   work.   Some   have   actually   been   denied   to   execute   a  particular  assignment  because  of  their  stammer.    Many   worry   about   what   others   may   think   of   them   because   of   their   stammer.  Undesirable   perceptions   are   feared,   like   questioning   their   intelligence   or   overall  competence   and   that   stammering   would   be   seen   as   unprofessional   or   even  inappropriate.   In   extremis,   it   is   feared   that   the   stammer   would   be   related   to   an  intellectual  disability.  It  is  also  believed  and  confirmed  that  employers  perceive  PWS  negatively  (Hurst  &  Cooper,  1983).  All  these  thoughts  affect  the  self-­‐esteem  and  self-­‐confidence   of   the   participants   who   stammer.   Besides   this   they   indicate   that   the  effort  to  speak  fluent  feels  inauthentic  and  could  bring  a  new  focus  to  their  speaking.  Disclosure  of  having  a  stammer   is  experienced  as  challenging.  Participants  describe  both   options,   for   some   it   is   helpful   and   can   prevent   some  misconceptions,   others  fear   to   be   open   about   it   because   of   previous   unfavourable   experiences   (Bricker-­‐Katza  et  al.,  2013).  

1.2.3.1  Career  choice    The   impact   on   work   experiences   of   people   who   stammer   can   start   at   the   initial  stages   when   making   a   career   choice.   The   choice   of   occupation   can   be   of   major  concern  (Klompas  &  Ross,  2004)  or  be  influenced  by  the  stammer  because  of  making  the  choice  based  on  their  speech  competency  (Crichton-­‐Smith,  2002).  Some  PWS  will  pursue   jobs  of   interest,  ability  and  suitability  while  others  will  not  because  of  their  stammer  (Bricker-­‐Katza  et  al.,  2013).  Restrictions  are  described  towards  the  type  of  jobs  and  roles  taken  on  at  work  (Klein  &  Hood,  2004).  For  example  avoiding  jobs  that  require   calling   or   oral   presentations   (Hayhow   et   al.,   2002).   Potentially,   this   is  strengthened   by   perceptions   of   others   seeing   PWS   unfitting   professions   like  teaching,  sales  or  law  (Gabel  et  al.,  2004;  Swartz  et  al.,  2009),  leading  to  some  

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PWS  disappointed  because  of  the  stammer  limiting  their  professional  opportunities  before   it   even   has   started   (Bricker-­‐Katza   et   al.,   2013)   or   unhappy   in   positions  differing  from  their  ambitions  (Rice  &  Kroll,  1997;  Klein  &  Hood,  2004).  However,  not  everybody   describes   to   be   unsatisfied   with   their   current   job   even   if   they   are   not  trained  for   it   (Bricker-­‐Katza  et  al.,  2013).  Others  mention  stammering  not  affecting  their   career   choice   though   it   impacts   their   job   performance,   interactions   with  superiors  and  promotion  ability  (Klompas  &  Ross,  2004).  Potentially  leading  to  PWS  pursuing   lower   levels  of  achievement  because  of   low  self-­‐esteem  and  performance  anxiety  (Van  Riper,  1971  cited  in  Klompas  &  Ross,  2004).  

1.2.3.2  Promotion    Research   in   Australia   and   Britain   observed   no   significant   difference   in   salaries   of  PWS   (Tran   et   al.,   2011;   McAllister   et   al.,   2012).   However,   at   the   age   of   50   a  difference   in   status   of   job   such   as   obtaining   lower   socio-­‐economic   professions   is  observed  for  PWS  (McAllister  et  al.,  2012).  Besides  this,  Rice  and  Kroll  (1994)  stated  that,  based  on  a  survey  of  282  PWS,  stammering  negatively  influences  performance  evaluation  and  PWS  can  experience  discrimination  at  work.    Several  qualitative  researches  confirm  these  facts  by  PWS  describing  experiences  of  stammering   hindering   promotion   (Klompas   &   Ross,   2004;   Klein   &   Hood,   2004;  Bricker-­‐Katza   et   al,.   2013;   Crichton-­‐Smith,   2002).   For   example,   due   to   attitudes   of  bosses   and  managers   (Bricker-­‐Katza  et   al.,   2013)  or  negative   stereotyping   (Klein  &  Hood,   2004)   resulting   in   not   being   considered   or   fruitless   applying   for   promotion  (Bricker-­‐Katza  et  al.,  2013;  Crichton-­‐Smith,  2002).  However,   mind-­‐sets   and   feelings   of   the   PWS   itself   can   also   obstruct   professional  progress     (Bricker-­‐Katza  et  al.,   2013;  Klein  &  Hood,  2004).   For  example   the   fear  of  greater  verbal  demands  or  interviews  could  make  participants  prefer  to  stay  in  their  comfort  zone  (Bricker-­‐Katza  et  al.,  2013).  

1.2.4  Stammering  and  social  relationships  

1.2.4.1  Social  life      Research   from   40   years   back   until   now,   describes   social   interactions   and   intimate  relationships  being  challenging  for  adolescents  who  stammer  (Blood  et  al,  2003)  as  for  adults  who  stammer  (Beilbya  et  al.,  2012;  Craig  et  al.,  2009).  However,   personal   testimonials   describe   that   differently.   Adolescents   describe   a  common   theme   that   stammering   doesn’t   restrict   their   social   life   (Hearne   et   al,  2008).   The  majority   of   students  who   stammer   in  Blood  et   al.   (2003)   indicate   that,  stammering  doesn’t  impact  whether  ‘people  want  to  be  friends’  or‘  ask  them  out  on  dates’.  This  still  leaves  a  minority  from  25%  up  to  50%  in  some  cases,  reporting  the  opposite   and   in   addition,   high   levels   of   teasing  or   bullying   in   school.   This   contrast  

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results   from   perception   research   where   adolescents   and   young   adults   perceived  their  peers  who  stammer  to  be  less  attractive  and  were  less  likely  to  initiate  intimate  relationships   with   someone   who   stammers   (Van   Borsel   et   al.,   2011).   Blood   et   al.  (2003)  place   the   responses  of   the   students  who   stammer  under   coping   strategies,  like  hiding  to  manage  the  stereotyping  and  prejudices  related  to  stammering.    Klompas   &   Ross   (2004)   report   that   for   most   adults   who   stammer,   it   doesn’t  intervene   in   establishing   friendships   even   though   others   commonly   respond  unfavorable  to  their  speech.  In  Daniels  et  al.  (2012)  the  majority  of  participants  recall  positive  experience  with   teachers  and  peers   in   school.   In  Bajaj  et  al.   (2014)  half  of  the  participants  describe  how  stammering  does  impacts  interpersonal  and  social  life.  He   concludes   that  PWS  do  experience   some  discrimination  and   insecurity   in   social  participation.  However,  their  overall  quality  of  life  (QOL)  in  the  social  context  is  not  heavily   reduced   (Bajaj   et   al.,   2014).   Crichton-­‐Smith   (2002)   adds   that   PWS   could  experiences   lower   severity   of   stammering   at   home   or   in   social   environments  perhaps  because  of  less  limitation  and  more  perceived  support.        In   a   research   with   partners   of   PWS,   acceptance   of   the   stammer   is   of   great  importance.  Openness,  honesty  and  understanding  are  commonly  mentioned  during  the   interviews.   Besides   this   unity,   shared   experiences   and   not   perceiving   the  stammer  as  a  limitation  are  experienced  as  supportive.  Some  partners  describe  the  urge   to,   sometimes,   protect   the   partner   who   stammers.   However,   each   couple  individually  defines  what  a  supportive  relationship  is  (Beilbya  et  al.,  2012).    

1.2.4.2  Stigma    Stigma   is  defined  as  attributing  negative  features  to  a  person  or  a  group  of  people  (Goffman,  1963  cited  in  Daniels  et  al.,  2007).  Stigma  is  described  as  a  social  process  including  labelling,  connecting  differences  to  stereotypes,  separation,  status  loss  and  discrimination.  (Link  and  Phelan,  2001  cited  in  Daniels  et  al.,  2007).    Perception   of   others   on   PWS   is   explored   in   several   contexts   like   parents,   peers,  students,   teachers,   professionals   and  employers   (Crowe  &  Cooper,   1977;  Crowe  &  Walton,   1981;  Dorsey  &  Guenther,   2000;   Fowlie  &  Cooper,   1978;   St.   Louis  &   Lass,  1981;  St.  Louis  et  al.,  2009;  Yeakle  &  Cooper,  1986).  Many  of  theses  studies  show  a  less  positive  view  towards  PWS  (Silverman  &  Paynter,  1990;  Klompas  &  Ross,  2004;  Bebout  &  Bradford,  1992;  Crowe  &  Walton,  1981;  Ham,  1990;  Kalinowski  et  al,  1993;  Ruscello  et  al,  1994)  as  early  as  in  kindergarten  (Ezrati-­‐Vinacour  et  al.,  2001;  Langevin  et  al.,  2009).  Additionally,  approximately  20  percent  of   primary   aged   children  will   have   negative   attitudes   of   their   peers   that   stammer  (Langevin,   2009),   adolescents   who   stammer   being   perceived   less   popular   and  

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rejected  more  often  or  being   the  victim  of  bullying   (Davis  et  al.,  2002;  Evans  et  al,  2008).   Teachers   can   have   low   awareness   of   stammering   (Hearne   et   al.,   2008)   and  even  professors  who  rate  the  hypothetical  students  who  stammer  more  negatively  than  the  average  student  (Dorsey  &  Guenther,  2000).    In  qualitative  research,  the  majority  of  adolescents  who  stammer  don’t  confirm  that  the   stammer   is   stigmatizing   (Blood   et   al.,   2003)   or   socially   limiting   (Hearne   et   al.,  2008).  However,  adolescents  mention  that  they  don’t  talk  about  their  stammer  with  others  (Hearne  et  al.,  2008;  Blood  et  al.,  2003)  and  regularly  keep  it  a  secret  (Blood  et   al.,   2003).   Furthermore,   several   adolescents   who   stammer   report   not   knowing  what  it  is  and  describe  misconceptions  about  stammering  which  only  improve  once  attending  treatment  (Hearne  et  al.,  2008).  Experiencing   stigma   may   depend   on   the   severity   of   the   stammer.   Observational  research   report   that,   adolescents   with   a   less   severe   stammer   will   fit   in   at   school  while  stammering  more  severe  it  will  be  challenging  (Erickson  &  Block,  2013).  Putting   different   aspects   together   as   the   chronic   nature   of   stammering,   negative  stereotyping   and   self-­‐reported   dissatisfaction   in   communicational   interactions,   it  might  stigmatize  adolescents  who  stammer  (Blood  et  al.,  2003).  Whereby,  most  PWS  experience  stigmatizing  actions  by  adulthood  (MacKinnon  et  al.,  2007).  The   attitudes   of   others   are   similar   between   adolescents   and   adults   (Flynna   &   St.  Louis,   2011)   who   assume   that   PWS   are   nervous,   shy,   introvert,   passive,   having  psychological   problems   (Craig   et   al.,   2003;  Gabel   et   al.,   2004;  Hughes  et   al.,   2010;  Langevin   et   al.,   2009).   Furthermore,   that   stammering   reduces   professional  expectations  (Hulit  &  Wirtz,  1994;  Hurst  &  Cooper,  1983;  Klein  &  Hood,  2004;  Logan  &  O’Connor,   2012;   Silverman  &   Paynter,   1990).   These   negative   social   perceptions  can   become   self-­‐perceptions   for   children   as   adults  who   stammer,   expecting   being  unfavorably  judged  due  to  their  stammer  (Crocker,  1999  cited  in  Blood  et  al.,  2003).    Gilmore  (1974)  stated  that  the  resulting  limitations  are  due  to  the  negative  attitudes  socially   imposed   and   to   these  which   become   internalized   by   the   PWS   resulting   in  similar   attitudes   towards   themselves   (cited   in   Klein&  Hood,   2004).   This   is   possible  from  a  young  age,  through  adjusting  to  their  dysfluency  (Crichton-­‐Smith,  2002).  

1.2.4.3  Support  social  network    Support   can   come   from   different   directions   like   professional   counseling,   support  groups,   family   and   friends.   Supportive   factors   can   be   to   connect   with   others,  exchange   information   and   disclose   stammering   (Plexico   et   al.,   2004).   Further,  an‘accepting   listener’   can   make   a   substantial   difference   (Starkweather   &   Givens-­‐Ackerman,   1997   cited   in   Klompas   &   Ross,   2004),   like   the   partner   (Beilbya,   et   al.,  2012).   Besides   this   facilitation,   explaining   the   stammer   reduces   misconceptions  

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about  stammering  (Bricker-­‐Katz  et  al.,  2013).  Crichton-­‐Smith  (2002)  stated  that  a  supportive  communicative  environment  and  less  perceived  restrictions  could  possibly  make  participants  report  a  less  severe  stammer  at  home  or   in   social  environments.  Opposing  a  home  where   silence   surrounds   the  stammer,   could   be   harmful   and   could   make   a   child   think   the   stammer   is   not  acceptable  (Hearne  et  al.,  2008).    The  majority  of  adolescents  report  that  they  rarely  or  never  talk  about  stammering  to  others  (Blood  et  al.,  2003).  Furthermore,  for  them  professional  support  may  not  be   wanted   if   the   stammer   is   not   interfering   with   activities   with   the   peer-­‐group  (Hearne  et  al.,  2008).    When  the  impact  of  stammering  on  a  child/adolescent  and  its  families  was  observed  in   Erickson   &   Block   (2013),   emotional   concern   is   especially   mentioned.   Parent  describe  the  substantial  impact  stammering  has  on  different  areas  of  the  minors  and  the  family’s   life.  Dealing  with  their  child’s  frustration  or  sorrow  is  seen  challenging.  However  many  mention  making  minimal  sacrifices  even  when  financial  investments  have  been  done   for   treatment.  Some  PWS  themselves   report   that  stammering  has  an   impact   on   their   relationship   with   their   parents   (Klompas   &   Ross’s,   2004).   For  example   experiencing   lack   of   understanding   and   impatience   from   their   parents  (Erickson  &  Block,  2013).  Others  describe  how  stammering  had  been  painful  for  their  parents  (Klompas  &  Ross,  2004).  Contact  with  siblings,  is  described  both  positive  and  negative  as   in  patience  and  understanding  besides  pity  and  impatience  (Klompas  &  Ross,  2004).    

1.2.5  Treatment  -­‐  Management    

1.2.5.1  Therapy      In  certain  parts  of  the  world  multiple  different  therapy  methods  are  offered  at  any  age  to  PWS.  Treatment  at  kindergarten  age  will  vary  from  treatment  for  adolescents  or  adults  (Packman,  2012).  It  is  been  proven  difficult  to  know  which  treatment  is  the  best   way   to   deal   with   stammering   for   which   individual   (Bloodstein   et   al.,   2008).  Some   research   has   reported   the   effectiveness   of   treatment   being   limited   and  temporary  (Blomgren  et  al.,  2005).  For  example  it  could  be  that  if  higher  in  academic  performance   a   person   is   also   more   determined   in   attending   therapy   or   able   to  manage   stammering   (O’Brian,   2011).   Therefore,   it   is   essential   in   treatment   to  consider   each   person’s   individual   experience   with   stammering   and   broader   life  experiences  (Yaruss,  2010).    Experiences  with   therapy   and   treatment   of   PWS   are   reported   both   positively   and  negatively.  In  some  research,  most  participants  describe  a  positive  attitude  towards  speech  therapy  (Bajaj  et  al.,  2014),  the  improving  effect  it  had  on  their  quality  of  life  (QOL)   (Klompas   &   Ross,   2004)   and   helpful   during   the   transitional   process   to  

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successful   manage   stammering   (Plexico   et   al.,   2004).   Therapy   is   supportive   in  improving   self-­‐confidence   or   how   they   feel   about   themselves   and   learning  techniques  to  cope  with  stammering  or  reduce  it  (Klompas  &  Ross,  2004;  Plexico  et  al.,  2004).  For  example  by  modifying  negative  attitudes,  feelings  and  thoughts  about  stammering   (Plexico   et   al.,   2004).   Furthermore,   practicing   speech  with   relatives   is  seen  essential  (Hearne  et  al.,  2008).  For   example   by   modifying   negative   attitudes,   feelings   and   thoughts   about  stammering  (Plexico  et  al.,  2004).  Other  PWS  continue  stammering  and  experiencing  feelings   of   helplessness,   hopelessness,   shame,   fear   and   avoidance   (Corcoran   &  Stewart,  1998;  Daniels  et  al.,  2006;  Plexico  et  al.,  2005).   Intuitive  coping  strategies  can  be  picked  up  again  which  can  cause  feelings  of  failure  and  additional  restriction  (Crichton-­‐Smith,   2002).   Practicing   and   transferring   taught   coping   strategies   appear  to  be  challenging  and  skipped  because  of  other  priorities  in  busy  lives  (Hearne  et  al.,  2008).    Adolescents  prefer  group  therapy  with  peers  who  stammer  above  individual  therapy  due  to  the  companionship  they  experience,  the  fact  they  can  learn  from  each  other  and   that   they  don’t   feel   alone   in  dealing  with   this   challenge   (Hearne  et   al.,   2008).  However,   it   is   important   to   make   sure   adolescents   are   ready   for   treatment   to  prevent  drop  out   (Hearne  et  al.,  2008).  Besides  group  therapy,   intensive  therapy   is  also  seen  as  useful   (Hearne  et  al.,  2008).  The  moment  to   initiate   therapy  differs   in  age   and   often   goes   together  with   the   personal   decision  wanting   to   do   something  about   it.  For  some  that  can  be  professional  ambitions   (Hearne  et  al.,  2008).  Adults  who   stammer   also   perceive   support   groups   positively   (Ramig,   1993).   Members  mention   building   improved   self-­‐esteem   and   receiving   support   in   accepting   the  stammer  (Klein  &  Hood,  2004).    

1.2.5.2  Self-­‐  Management    PWS  deal  with  stammering  based  on  different  strategies  in  different  contexts.  These  strategies  can  be:  no  change,  intuitive  change,  taught  change  and  highlighting,  being  used  in  combination  (Crichton-­‐Smith,  2002).  Participants  perceive  intuitive  strategies  (e.g.,   forcing   speech   or   avoiding)   rather   secondary   or   taught   strategies   (e.g.,  disclosure,   fluency   increasing  and  modification   techniques)  which  makes   them  feel  responsible  for  no  improvement  if  the  intuitive  strategies  are  continued  to  be  used  (Crichton-­‐Smith,  2002).  The  self-­‐derived  coping  strategies  are  seen  in  literature  and  professional  context  as  maladaptive  learning.  However,  any  coping  strategy  of  PWS  could   be   natural   and   normal   for   dealing   with   stress   resulting   from   stammering  (Manning  &  Dilollo,  2007  cited  in  Plexico  et  al.,  2009).  Some   PWS   fruitfully   manage   the   challenges   faced   through   stammering   with   and  without   formal   treatment   (Anderson  &  Felsenfeld,  2003;   Finn,  1996;  Plexico  et  al.,  

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2005   in   Pexico   et   al.,   2009).   In   research   the   following   factors   in   successful  management  were  found:  behavioral  modifications  like  self-­‐assessment,  fluency  and  stammering   modification   techniques,   motivation,   environmental   change   and  changes  in  attitude  towards  self  and  stammering  (Anderson  &  Felsenfeld,  2003;  Finn,  1996;  Crichton-­‐Smith,  2002).    Plexico  et  al.  (2004)  completed  a  qualitative  research  on  successful  management  of  stammering   resulting   in  a  broad  view  on  how  successful  management   is  perceived  for  the  participants.  At  first  the  term  successful  management  is  preferred  instead  of  ‘recovery’  based  on  three  reasons:  one,  recovery,  suggesting  stammering  is  a  disease  (Manning  &  Dilollo,  2007  cited  in  Plexico  et  al.,  2009);  two,  even  though  high  levels  of   fluency   are   obtained,   the   person   continues   to   apply   cognitive   and   behavioral  elements;  three,  suggesting   it   is  not  about  presence  or  absence  of  stammering  but  the   ability   to   successful  manage   the   stammer.     In   this   line,   Drewery   et   al.   (2000)  state  “health,  in  our  view,  has  much  to  do  with  the  capacity  for  agency  and  less  to  do  with  the  absence  of  disease”  (p.  256  cited  in  Plexico  et  al.,  2004).  The  participants  in  Plexico   et   al.   (2004)   confirm   this   with   the   opinion   that   living   the   life   they   want  doesn’t   depend   on   absolute   fluency   but   coping   with   the   stammer   in   different  degrees.  In  this  way  some  will  reach  mainstream  and  some  high  fluency  (Chmela  et  al.,  1998  cited  in  Plexico  et  al.,  2009).      Participants   who   stammer   describe   strong   motivation   and   determination   to  accomplish  their  goals.  Self-­‐therapy  is  a  part  of  this,  where  they  practice  outside  the  therapy   context   by   taking   risks   and   self-­‐disclosure   (Anderson  &   Felsenfeld,   2003).  Self-­‐disclosure  is  experienced  as  beneficial,  allowing  the  other  person  to  know  there  is  a  likelihood  of  stammering  which  takes  away  the  surprising  effect.  Together  with  taking  risks  it  brings  the  fear  and  avoidance  down  substantially  (Plexico  et  al.,  2009).  This   approach-­‐oriented   management   instead   of   avoiding   offers   multiple   social,  physical,   cognitive   and   affective   advantages   (Plexico   et   al.,   2009)   for   example  accomplishing  more   ambitions   (McAllister   et   al.,   2012).   Consequently,   not   directly  linked   to   stammering,   experiences   of   persistence   and   success   in   talents   and  strengths   in  others   fields  are  also  perceived  supportive   to   transform  the   impact  of  stammering  (Plexico  et  al.,  2004).  Even  though  successfully  managing  a  stammer   is  an  ongoing  activity  featured  by  self-­‐acceptance,  the  stammer  doesn’t  play  the  main  role   anymore   in   life.   More   positive   themes   can   replace   the   previously   negative  feelings.   Accomplishment   is   experienced   and   more   fluency   is   achieved.   More  important  is  the  fact  that  life  choices  are  not  defined  anymore  by  anxiety  and  there  is   full   participation,   resulting   in   a   sense   of   freedom   and   optimism   (Plexico   et   al.,  2004).    

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2.  Methodology  

2.1  Problem  statement  and  research  questions    Stammering  has  been  researched  quantitatively  and  qualitatively   for  decades,  with  the   research   initiated   from   different   perspectives   such   as   biological,   social   or  psychological   (Sheehan   &   Martyn,   1966;   Guitar,   1985;   Neilson   &   Andrews,   1993;  McAllister  et  al.,  2012;  Mansson,  200;  Craig  et  al.,  2009;  Chang  et  al.,  2011;  Raza  et  al.,   2015).   However,   a   thorough   search   indicates   that,   most   of   the   research   on  stammering   has   been   performed   in   the  Western   world.   Only   limited   research   on  stammering  has  been  completed  in  the  continents  like  Asia  and  Africa.    In  Ghana  or  any  of   its  neighbouring  countries,   there   is  no  research  on  stammering  available.  However,  out  of  personal  experience   living  and  completing  an   internship  in  Ghana  for  almost  two  years,  it  is  highly  common  to  meet  people  with  a  stammer  (PWS)   in   settings   such   as   public   transport,   the   market   or   a   professional   context.  Through   initial   conversations   with   people   in   Ghana   and   the   participants   in   this  research,   the   majority   mention   knowing   several   others   who   stammer   or   hear   it  commonly.   The   prevalence   of   people   who   stammer   is   estimated   at   1%   of   the  population  (Bennet,  2006).  Daniels  et  al.  (2007)  suggested  this  would  mean  it  is  not  likely  if  you  are  a  PWS  to  know  someone  else  with  a  stammer.  This  causes  to  suspect  the   rate   of   one   percentage   of   PWS   to   be   substantially   higher   in  Ghana.  However,  broad  quantitative  research  is  desirable  to  confirm  this  impression.    In  2014,  the  Ghana  Stammering  Association  (GSA)  was  launched  by  PWS,  recognising  the  need  for  support  for  persons  who  stammer  in  Ghana.  This  organisation  is  guided  by  a  speech  therapist  in  Ghana  working  in  particular  with  individuals  who  stammer.  They  aim  to  create  more  awareness  on  stammering.  Furthermore,  there  are  only  five  speech   therapists   currently   fulfilling   this   profession   in   Ghana,   all   located   in   the  capital  Accra,  mainly  focusing  on  speech  challenges  other  than  stammering.    Research  has  observed  that  stammering  influences  different  areas  in  life  (Bloodstein  et  al.,  2008)  and  portrayed  the  impact  of  stammering  as  disabling  (Yaruss  &  Quesal,  2004).  Additionally   quality  of   life   research   compares   the   impact  of   stammering  on  social   functioning   and   vitality   to   the   impact   of   chronic   disorders   like   diabetes   or  coronary  heart  diseases  (Ahroni  &  Boyko,  2000;  Lalonde  et  al.,  2001),  confirming  the  significant  impact  of  having  a  stammer.    Relating  to  the  suspected  high  prevalence,  limited  available  support  and  pronounced  impact   of   stammering,   it   is   desirable   to   initiate   research   on   this   topic   in   this  particular   context   of   Ghana.   This   research   aims   to   broaden   the   understanding   of  experiences   of   people   with   a   stammer   in   a   context   different   from   the   often-­‐researched  western  world  and  inform  policy  to  incorporate  the  needs  of  PWS.        

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This   study   tends   to   initiate   research   with   PWS   in   Ghana,   through   exploring   their  experiences  in  different  contexts.  The  goal  of  this  research  is  to  collect  a  broad  range  of   unique   experiences   of   PWS   to   capture   the   complexity   of   experiences   on   topics  related  to  stammering.  The  research  aims  to  answer  the  following  questions:    

v How   do   experiences   of   PWS   broaden   the   understanding   of  stammering?    

v What  is  the  current  knowledge  and  awareness  of  stammering  for  the  participants  (PWS)  and  their  social  network?    

 v What  do  PWS  perceive  as  support?  

 v What  can  policy  learn  from  experiences  of  PWS?  

 

2.2  Research  method  and  procedure    It  is  worth  noting  that  the  set  up  of  this  research  has  gone  through  different  stages  of   shaping.   In   search   for   local   guidance   to   adapt   the   research   to   the   context   of  Ghana,  visits  took  place  and  e-­‐mail  sent  to  different  Ghanaian  universities.  However,  no   local   researcher   was   found   relating   to   this   topic.   Further   search   resulted   in  contact  with  Nana  Akua  Owusu,  the  only  speech  therapist  and  guest  lecturer  in  the  country   focussing   on   stammering.   Subsequently,   contact   was  made  with   the   Elias  Apreku,  founder  of  the  Ghana  Stammering  Association  (GSA).  GSA  is  an  organisation  guided  by  the  precious  mentioned  speech  therapist.    From   the   support   paradigm   perspective,   it   is   the   wish   to   complete   research   in  support  to  the  context  where  it  is  conducted.  Several  meetings  and  contact  through  various  media  took  place  during  one  year  prior  to  the  data  collection  with  GSA  and  the   guiding   speech   therapist,   in   order   to   define  what   is   supportive   and   how   self-­‐advocacy   and   empowerment   can   be   enhanced.   Further   two   interviews   were  conducted  with  a  local  psychologist,  Nortey  Dua,  who  has  some  experience  working  with   PWS   and   a   British   speech   therapist   who   voluntarily   executed   a   practical  workshop   and   some   private   assessments   of   PWS   in   Ghana.   Through   this  cooperation,  fruitless  actions  or  overwhelming  PWS  were  prevented.  Conversations  took   place   with   another   speech   therapist   in   Belgium   to   learn   more   about  stammering.  

2.2.1  Sampling  size  and  strategy    Patton  (1990)  states  the  sampling  strategy  and  sampling  size  are  defined  by  the  goal  

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of  the  research,  available  resources,  the  research  questions  and  present  restrictions.  The  goal  of  this  research  is  to  explore  experiences  and  broaden  the  understanding  of  stammering,   therefore,   the   purpose   of   sampling   lies   in   the   search   for   participants  who  can  share  rich  information  (Patton,  1990).    The   first   applied   sampling   strategy   was   criterion   sampling   (Patton,   1990).   People  who  stammer  and  are  members  of  Ghana  Stammering  Association  were  contacted.  The   majority   of   the   participants   haven’t   received   a   professional   diagnosis   of  stammering   due   to   limited   number   of   speech   therapists   in   the   country   and  affordability.   Available   resources   of   the   present   study   also   didn’t   allow  diagnosing  participants.   Two   participants   followed   speech   therapy   for   a   few   sessions.   The  severity  of  stammering  varied   from  almost  not  noticeable   to  highly  noticeable.  For  some  participants,   it  was   rather  more  present  during  childhood.  Some  participants  block  on  words  for  a  certain  time  while  others  repeat  words  in  every  sentence.  The  criterion  of  being  a  member  of  GSA  was  preferred  in  order  to  approach  individuals  who  have   taken  the   first   step  on  personal   initiative   to   reflect  on   their   stammer  by  connecting   to   GSA.   This   was   important,   considering   the   interview   could   bring   up  sensitive  topics  that  a  person  has  to  be  willing  and  ready  to  face,  and  GSA  would  be  able   to   provide   some   support   if   needed   afterwards.   Additionally,   participants  previously  reflecting  on  their  stammer  could  provide  more  rich  information.  Contact  with  gatekeepers  (Van  Hove  &  Claes,  2011)  of  GSA  was  sustained  from  one  year  prior  to  the  data  collection,  allowing  building  trust  and  gaining  access  (Van  Hove  &  Claes,  2011).   The   founder  of  GSA  made   the   initial   contact  with   the  participants,  taking   on   the   role   of   ‘intermediary’   that   the   participants   know   and   respect   (Van  Hove   &   Claes,   2011).   This   enabled   developing   a   working   relationship   between  participants  and  the  researcher  (Berg,  2001).      Secondly  attention  was  given  to  maximum  variation  sampling   in  order  to  find  main  themes   of   stammering   experiences   in   order   not   to   generalize   but   to   improve  understanding  (Patton,  1990).  Even  though  Plexico  et  al.  (2004)  stated  that  there  is  little   evidence   to   select   a   representative   sample   of   PWS   because   it   would   not   be  clear  which   variables   the   selection   should   be   based   on,   extra   effort   was  made   to  reach  female  participants  and  participants  of  different  ages  and  educational   levels.  However,   contextual   restrictions   didn’t   allow   the   fullest   variation.   Other  media   to  reach   PWS   were   perceived   as   high   demanding   or   unavailable   within   the   current  research  boundaries.      A   third   sampling   strategy  applied  was  asking  participating  members  of  GSA   if   they  knew   other   PWS   who   could   be   willing   to   participate,   applying   snowball   or   chain  sampling  (Patton,  1990).      

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Table  1:  Background  of  the  study  Participants        Participants   Age   Gender   Education   Occupation  Kwesi   37   Male   HND  (Professional  Bachelor)   Procurement  officer    Eric   28   Male   Bachelor  in  Economics   Statistician  Ebo   24   Male   Bachelor  in  Computer  Science   National  Service  Michael   31   Male   Bachelor  Business  Administration   Banking  Kofi   31   Male   Vocational  training  Building  &  Construction   Aluminium  works  Steven   25   Male   Bachelor  in  Statistics   National  Service  Yaw   32   Male   Bachelor  in  Port,  Shipping  &  Administration     Harbour  Sales  Manager  David   25   Male   Bachelor  in  Communication  Graphic  Design       Graphic  Designer  Akosua   28   Female   Secondary   Unemployed  Mabena   26   Female   Secondary   House  Mother    Kwaku   27   Male   Masters  in  Finance,  Investment  &  Banking   Student  Jerry   31   Male   Masters  in  Finance   Stockbroker  Ben   22   Male   Bachelor  in  Economics  &  Geography   Student  Ato   21   Male   Bachelor  in  IT   Student  Kojo   29   Male   Bachelor  in  Environmental  Science   Env’t  Health  &  Safety  Manager  Erama   53   Female   Master  in  Business  Administration   Director  Real  Estate  Company  Albert   27   Male   Secondary   Unemployed  

*   Participant’s   names   have   been   replaced   by   pseudo   names   for   confidentiality  purposes    The  sample  size  was  defined  by  the  goal  of  the  study  of  exploring  the  phenomena  of  stammering  and  attempt  to  describe  variation  and  understanding  of  it  and  available  resources   (Patton,   1990).   Therefore,   a   rather   larger   number   of   participants   were  targeted  resulting  in  seventeen  participants  (see  table  1).    

2.2.3  Qualitative  interviewing    The   standard   definition   of   interviewing   is:   ‘a   conversation   with   a   purpose’   (Berg,  2001,   p.66).   Qualitative   interviewing   or   also   called   semi-­‐structured   and   in-­‐depth  interviewing  is  a  suitable  research  method  with  the  purpose  of  approaching  sensitive  research  phenomena  (Van  Hove  &  Claes,  2011).    Such  is  stammering,  which  is  often  poorly  understood  and  triggers  a  set  of  challenging  emotions.  Consequently,   it   is  a  matter  to  be  dealt  with  care.  Only  PWS  themselves  are  able  to  describe  these  covert  experiences   of   stammering   (Perkins   1997   in   Kathard,   2001),   possible   through  qualitative   interviewing.   The   open   structure   and   flexibility   combined   with  questioning  and  active  listening  skills  of  the  interviewer  (Van  Hove  &  Claes,  2011)  for  example   by   unprepared   probes,   allow   adapting   to   the   personal   story   of   the  participant  (Berg,  2001)  and  for  the  participant  to  feel  comfortable.  In  line  with  this,  qualitative   interviewing   tends   to  understand  perceptions  of  participants   instead  of  outlining  differences  between  them  (Van  Hove  &  Claes,  2011;  Taylor  &  Bogdan,  1998  in  Berg,  2001).   Interviews  well  prepared  and  conducted  can  capture  extensive,  rich  

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and  detailed  information  (Van  Hove  &  Claes,  2011)  permitting  correct  understanding  of   exchanged   views   (Cannell   &   Kahn,   1968   in   Berg,   2001).   In   this   way   qualitative  interviewing   is   rather   discovering,   describing   and   hypothesis   generating   than  hypothesis  testing  (Crabtree  &  Miller,  1991  in  Corcoran  &  Stewart,  1998)  suiting  this  explorative   research.   Challenges   of   reliability   and   validity   need   proper   attention  (Creswell  &  Miller,  2000),  which  are  described  at  length  for  this  research.      Based  on  the  literature,  well  thought  choices  were  made  to  compose  the  interview  guide   for   the   semi-­‐structured,   in-­‐depth   interviews.   It   explores   a   set   of  predetermined   contexts   and   topics   (Berg,   2001)   related   to   stammering,   often  presented  in  this   literature  such  as  educational  and  processional   life  besides  family  and  social  context.  All  participants  were  asked  to  describe  their  experiences  related  to   these   contexts   and   topics   in   the   same   order   supported   by   probe   questions   to  extend  their  answers  (Berg,  2001).  The  interview  guide  started  with  basic  questions  such  as  place  of  birth,  education  and  onset  of  stammering  and  rather  sensitive  topics  were  situated  further  in  the  interview  guide  (Berg,  2001).  Open  and  broad  questions  were  selected  allowing  participants  to  share  their  unique  story  in  a  particular  context  or   on   a   particular   topic,   according   to   personal   importance.   Hence   predetermining  the  answers  was  limited  as  much  as  possible.  To  avoid  a  problem-­‐focused  approach  (Daniels   et   al.,   2007)   attention   was   paid   to   formulate   neutral   and   not   suggestive  questions,   permitting   and   stimulating  participants   to   share  positive   experiences   as  well.   The   interview   guide   was   revised   and   adapted   by   GSA,   the   guiding   speech  therapist  and  a  person  with  a  stammering  background.      An   informed  consent  was   signed  and  collected.  Participants  were   informed  on   the  purpose   of   the   research,   ability   to   withdraw   at   any   moment   of   the   process   and  guaranteed  anonymity.  They  were  also  able  to  ask  clarifying  questions.      The  duration  of  the  interview  varied  from  one  hour  to  two  hours  and  was  conducted  in   English.   One   interview   had   to   be   split   in   two   separate   meetings   due   to   time  limitation.   Another   interview   could   only   cover   half   of   the   question   guide.   Several  attempts   for   a   second   meeting   were   made,   however,   unfruitful.   The   seventeen  interviews  were  spread  over  a  period  of  three  months,  June  2015  –  August  2015.  Per  two  or  three   interviews,  a  demanding  eight-­‐hour  one-­‐way   journey  was  undertaken  and  a   three  days   lodging   in  a  place   two  to   three  hours   in   traffic   from  the  meeting  point.   Several   phone   calls   and   messages   spread   over   days   or   weeks   preceded   a  maximum   two  days  until   one  hour  up   front   confirmation   to  meet.   Sometimes   this  resulted  in  undertaking  the  journey  in  uncertainty  and  contacting  participants  again  on  the  way  to  the   interview  meeting   in  order   to  confirm.  Some  of   the  participants  arrived  on  time,  some  arrived  half  an  hour  up  to  one  hour  and  half  late  and  others  had  to  be  informed  to  reschedule  because  of  this  delay.  Participants  were  given  the  

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choice   of   location   and  moment   to   be  most   convenient   and   comfortable   for   them  (Berg,  2001)  for  the  interviews.    Despite   these   challenges,   patience,   understanding   and   gratitude   was   expressed  towards   all   participants   realising   their   voluntary   sacrifices   of   time,   effort   and  willingness  to  share  their  personal  story  and  the  need  to  feel  comfortable  to  be  able  to  manage  the  stammer  (Berg,  2001).  Interviews  were   recorded  with   two   different   devices   assuring   no   loss   of   data   and  enabling   to   transcribe   and   analyse   the   information   (Spradley,   1979   in   Aronson,  1994).   After   conducting   each   interview,   personal   notes   were   written   down.  Following,   the   second   time-­‐consuming   procedure   was   performed,   literally  transcribing   the   interviews.   The   transcribed   interviews   were   sent   back   to   the  participants   for   revision   with   the   possibility   to   add   information,   adapt   or   delete  certain  parts.    

2.2.4  Thematic  analysis    The  goal  of  this  research  is  to  explore  the  phenomenon  of  stammering  in  a  particular  context,   describe   its   potential   impact   and   demonstrate   its   complexity.   Thematic  analysis   of   the   collected  detailed   information   is   a   suitable  method   to  describe   the  experiences   rather   than   developing   theory   (Van   Hove   &   Claes,   2011).   Thematic  analysis  findings  are  understandable  to  the  general  public  and  appropriate  to  inform  policy  development   (Van  Hove  &  Claes  2011).   This   is   appropriate   for   the  audience  this  study  tends  to  reach.  Furthermore,  this  introductory  method  is  appropriate  for  starting   qualitative   researchers   and   hence,   suitable   for   this   master   thesis   study  (Braun  &  Clarke,  2006).    Thematic  analysis  demands  prolonged  effort  of   familiarising  with   the  data   through  conducting  and  transcribing  the  interviews,  followed  by  coding  and  organizing  data  to   generate   key   themes   (Van   Hove   &   Claes,   2011)   based   on   developed  understanding  of  what  is  vital  (Crabtree  &  Miller,  1991  in  Cocoran  &  Stewart,  1998).  This   process   encloses   thorough   considerations   about  what   is   truly   essential   about  the   gathered   information   (Patton,   1990   in   Cocoran  &   Stewart,   1998).   A   restricted  quantity   of   themes   and   sub-­‐themes   is   to   be   identified   that   describe   in   depth   and  represent   what   is   shared   during   the   interviews   (Kathard,   2001).   Themes   are  formulated   on   an   abstract,   conceptual   level   allowing   interpretation   and   not   just  describing  the  data  (Van  Hove  &  Claes,  2011).  To  enhance  transparency,  the  process  leading  to  the  obtained  results  will  be  described  in  detail  (Van  Hove  &  Claes,  2011).  This  was  an  iterative  process,  where  phases  were  not  strictly  separated  and  moved  forward  and  backwards  between  phases  (Van  Hove  &  Claes,  2011).    A  first  phase  of  analysis  is  familiarisation  with  the  data  until  insight  in  its  complexity  

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and   scope   is   obtained   (Braun   &   Clarke,   2006).   Interviews   were   conducted   and  transcribed  by  the  same  researcher  spread  over  a  period  of  six  months.  This  is  a  time  consuming   process.   However,   it   is   a   suitable   way   to   familiarize   with   the   data  (Riessman,   1993   in   Braun   &   Clarke,   2006).   This   is   acknowledged   as   part   of  interpreting   analysis   (Lapadat  &   Lindsay,   1999   in   Braun  &   Clarke,   2006).   Ideas   for  coding  were  formulated  and  noted  while  transcribing  (Braun  &  Clarke,  2006).  After  the   initial   coding   phase,   familiarisation   was   so   thorough   that   any   quote   could   be  identified  to  the  participant  who  formulated  it.    During  initial  coding,  all  interviews  were  read  and  every  paragraph  or  quote  received  a   code   of   a   meaningful   concept   or   at   this   stage   also   descriptive   codes   allowed  organisation  of  the  data  (Aronson,  1994;  Braun  &  Clarke,  2006).  Sixty  four  (64)  codes  and   sub-­‐codes   were   applied   manually   (Braun   &   Clarke,   2006).   Succeeding  paragraphs   or   quotes   were   systematically   highlighted   in   different   colours   of   the  transcribed   interviews   and   granted   a   code   in   footnotes   most   closely   describing  interesting   aspect   represented   in   these   quotes   or   paragraphs   that   will   allow  generating  themes  (Braun  &  Clarke,  2006).  As  suggested  in   literature,  at  this  stage,  the   entire   text   is   highlighted   except   for   a   few   unclear   sentences   (Braun  &   Clarke,  2006).    After  this  phase,  a  discussion  took  place  with  the  guiding  promoter  of  this  research,  who  independently  coded  and  interpreted  transcribed  interviews.  The  initial  coding  process  is  discussed  and  compared  if  there  is  consensus  between  interpretations.    Preparing  the  search  for  themes  bases  on  initial  coding,  all  quotes  were  grouped  per  code  per  participant   (Braun  &  Clarke,  2006)   in   an  Excel-­‐document  and   in   separate  Word   documents.   Eighteen   (18)   Word-­‐documents   were   created   with   conceptual  codes  and  with  some  containing  sub-­‐codes.    Starting  the  analysing  of  the  codes  in  order  to  suggest  potential  themes,  codes  were  grouped  based  on   their   interdependence   (Braun  &  Clarke,  2006)   resulting   in   three  groups.  Refining  these  themes,  a  Mind-­‐Map  (see  Figure  1)  was  composed,  grouping  the   18   codes   under   three   sub-­‐themes   for   each   theme,   demonstrating   a   certain  pattern   and   as   well   presenting   the   relation   between   the   subthemes   and   major  themes  (Braun  &  Clarke,  2006).  At  this  stage,  a  second  discussion  took  place  with  the  guiding  promoter  of  this  thesis  research.  Whether  the  analysis  is  data-­‐led  or  theory-­‐led  (Braun  &  Clarke,  2006),  the  suggested  themes,  its  inter-­‐dependence  and  naming  of  the  themes  are  discussed.    This  explorative  study  questioned  a  wide  range  of  topics.  These  topics  were  shaped  by  literature  review  and  the  research  questions  of  this  study.  In  line  with  this  given  codes  were  inspired  by  literature  background.  However,  in  the  interview  guide,  close  attention  was  given  to  compose  broad  and  non-­‐leading  questions  allowing  sharing  of  unique  experiences  according  to  personal   importance.  This  made  the  analysis  both  theory  and  data  led  (Braun  &  Clarke,  2006).    

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Figure  1:  Research  Procedure                                                                                  

LITERATURE  REVIEW  +  CLOSELY  WORKING  TOGETHER  WITH  GSA  &  LOCAL  SPEECH  THERAPIST  

Mind-­‐Map  

Mind-­‐Map  

INTERVIEWING      

Sending  interviews  to  participants  

 TRANSCRIBING    

 INITIAL  CODING    +  Organising  

data    

Grouping    Quotes  per  

Code      

Revising  coding    Grouping  

codes    

Initiating  Report    

Regrouping  Subthemes    

=  New  Themes    Initiating  

Discussion      

Send  Report  to  Participants  

 

   Review  with  Promoter,  theme  suggestion    

 Review  with  Promoter,  comparing  initial  coding    

Final  Report  

FAMILIARISATION  

THEME  SUGGESTION    

THEME  DEFINING  

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Subsequently,   composing   the   report   of   the   results   was   initiated.   Writing   on   the  report,  the  analysis  was  not  perceived  as  completed,  but  rather  a  work  in  progress  to  deepen  the  understanding  more.  Hence  a  first  version  of  the  report  and  discussion  of  ideas  allowed  reviewing  the  themes  and  subthemes  if  they  clearly  revealed  what  the   data   contains   (Braun   &   Clarke,   2006).   In   this   phase   it   became   clear   that  reorganizing   the   subthemes   generated   two   other   major   themes   more   accurately  representing  the  understanding  of  the  data  (Braun  &  Clarke,  2006).    Through   this,   homogeneous   subthemes   were   brought   together   in   a   major   theme  and  subsequently  more  clear  heterogeneous  major  themes  (Patton,  1990  in  Braun  &  Clarke,   2006).   A   new   mind-­‐map   representing   the   thematic   map   was   composed  (Braun  &  Clarke,  2006).  All  the  coded  quotes  were  revised  if  the  major  themes  and  subthemes  were   truly   relating   to   the  data   (Braun  &  Clarke,  2006).   Simultaneously,  the  next  phase  was  initiated  by  grouping  related  quotes  (Braun  &  Clarke,  2006)  that  allowed  paraphrasing   shared  experiences,   given  meaning  and   impact.  Additionally,  appropriate  quotes  of  all  participants  were  selected  for   illustrating  the  reporting  of  the   themes   (Aronson,   1994).   After   more   refining   the   themes,   this   phase   was  concluded  with   defining   and   administering   names   to   the   themes   (Braun  &   Clarke,  2006).    

2.2.5  Active  role  of  the  qualitative  researcher    Since   the   process   of   data   collection   and   analysis   are   potentially   influenced   by  personal   expectations,   values,   preferences,   social   and   cultural   context   and  theoretical  background  of  the  researcher  (Creswell  &  Miller,  2000),  the  specific  role  of   the   researcher   will   therefore   be   described   in   detailed   for   the   reader   to  understand  the  position  of  the  researcher  (Creswell  &  Miller,  2000).    I   entered   this   research   field   as   a   young   adult  woman  of   28   years   growing   up   in   a  Western  context,  to  be  more  specific,  Belgium.  However,  traveling  experience,  living  and  performing  voluntary  work  in  Honduras  from  a  young  age  broadened  my  views.  With  this  research,  I  finalize  my  academic  training  in  Educational  Science  specializing  in  Orthopedagogiek  (Special  Needs  Education).    Theoretical  perspectives  such  as  the  ‘support-­‐paradigm’,   ‘Quality   of   life’,   ‘Disability   Studies’,   ‘social   model’   and  ‘phenomenology’   shapes  my  perception  on   reality  and   so  motivate   this  qualitative  research.      At   the   moment   of   initiating   the   data   collection,   I   had   lived   for   one   year   and  completed   an   internship   in  Ghana,   allowing   to   observe   and   adapt   to   the   research  context.   Previously,   I   gained   a   year   of   working   experience   in   a   refugee   centre   in  Belgium,  working  with   people   from   different   countries   and   backgrounds.   Through  these  experiences,  I  gained  interpersonal  and  communication  skills  with  people  from  various  contexts  that  have  been  of  value  during  this  research.  

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With  the  topic  of  stammering,  I  had  minimal  to  no  knowledge  or  experience.  It  was  mentioned   during  my   education   and   the   topic   of   the   story   inspiring  my   choice   of  study.  It  was  during  my  stay  in  Ghana  that  I  observed  stammering  regularly,  possibly  every  day.  These  observations   intrigued  me  to   research  on   this   topic   in  support  of  PWS  in  Ghana.    From   personal   experiences   living   in   Ghana,   it   appears   people   don’t   easily   share  negative   or   difficult   experiences.   Others   explained   this   as   due   to   my   different  background.  This,   together  with  my   inexperience  with  stammering,   led  to  a  careful  attitude   during   this   research.   I   worked   closely   together  with   GSA   and   the   guiding  speech   therapist,   people   who   have   experience   with   stammering   in   this   context.  Every  choice  and  action  was  discussed.  Additionally,  the  perception  of  a  person  with  a  stammering  background  was  asked  to  gain  more   insight   in   the   lived  experiences.  This  caused  me  to  be  patient,  open,  not  high  demanding  or  obtrusive  so  participants  would  feel  comfortable.    Due   to   limited   experiences   with   PWS   prior   to   the   interviews   there   was   a   certain  nervousness   to   react   appropriate   if   a   stammer  occured.  Afterwards,   feedback   and  advice   was   sought   from   participants.   After   a   few   interviews   I   learned   to   wait  patiently  when  a  stammer  occured.  However,  there  was  no  need  not  act  like  nothing  was  going  on  or  become  distracted.  I  learned  to  name  the  situation  or  formulate  my  perspective  without  giving  advice.   I   started   the   interview  with  proposing  breaks  or  continue   on   another   moment   when   needed.   Interviews   were   experienced   as  intriguing,   surprising   and   touching,   giving   a   sense   of   fulfilment   (Berg,   2001).  Sometimes,  it  required  attention  to  process  the  feelings  occurring  while  listening  to  moving   life   stories.   A   strong   motivator   of   this   research   is   for   the   research   to   be  meaningful  in  the  context  where  it  is  conducted.  This  can  be  recognized  in  the  choice  of  topic,  the  set  up  of  the  research  and  the  analysis  of  the  data.  

2.3  Validity  -­‐  Trustworthiness    Qualitative   research   demands   to   address   validity   (Creswell  &  Miller,   2000)   or   also  called   ‘trustworthiness’   (Van   Hove   &Claes,   2011)   because   qualitative   research  doesn’t  rely  on  measurements  or  tools  and  rather  works  with  the  perceptions  of  the  researcher,  participants  and  readers  (Creswell  &  Miller,  2000).  A  research  honouring  this,  pays  close  attention  to  honesty  and  ethics  throughout  the  entire  research  process  and  the  findings  closely  correlate  with  the  experiences  of  the  participants   (Padgett,   1998).   Therefore,   the   perspectives   of   the   researcher,   the  participants  or  external  individuals  can  be  questioned  to  establish  validity  (Creswell  &  Miller,  2000).    It   will   be   described   how   this   research   has   given   attention   to   ‘credibility’,  ‘transferability’,  ‘dependability’  and  ‘confirmability’.    

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2.3.1  Credibility    Credibility  was  sought  in  the  following  ways.  At  first  through  prolonged  engagement  and   repeated   observation   (Creswell   &   Miller,   2000)   by   living,   completing   an  internship  and  conducting  this  research  in  Ghana  over  a  period  of  almost  two  years.  This   permitted   improved   understanding   of   the   environment   of   the   participants  (Creswell   &   Miller,   2000).   Contact   with   Ghana   Stammering   Association   and   the  guiding   speech   therapist   was   initiated   and   sustained   one   year   prior   to   the   data  collection.  Through  peer  review  and  debriefing  (Creswell,  1998  in  Van  Hove  &  Claes,  2008)  as   in  several  meetings  and  contact,   the   research  got  shaped  closely  working  together  with  the  founder  of  GSA,  the  speech  therapist  and  other  members  of  GSA.  Every  methodological  choice  and  decision  was  discussed  and  critically  analysed  to  be  the  most   appropriate   approach   of   this   research   in   this   context.   This   collaboration  allowed  to  build  trust  with  these  gatekeepers  who  introduced  the  researcher  to  the  participants   and   for   them   to  be   comfortable   sharing   their   experiences   (Creswell  &  Miller,   2000).  Another  peer   review  was   countless  discussions  with  a  person  with  a  stammering   background   to   broaden   understanding   of   the   perspective   of   lived  experience  in  the  context  of  the  research.  Additionally,  permitting  to  become  more  aware   of   personal   perception   as   the   researcher   and   understanding   of   the  phenomena   enabled   to   distance   from   these   while   listening   to   the   unique  perceptions   of   participants   (Cocoran  &   Stewart,   1998).   To   enhance   credibility,   the  role  and  views  of  the  researcher,  that  could  influence  the  research,  are  described  in  detail   in   the   chapter   methodology   (Creswell   &   Miller,   2000).   Further,   after  transcribing,   the   interview  was  sent  back  to  each  of   the  participants,  permitting  to  add,   adjust   or   delete   information.   Further,   the   participants   received   the   resulting  themes  and  quotes  from  the  interviews  that  supported  each  theme,  in  order  to  give  their   feedback.   Eleven  of   seventeen  participants   responded  before  handing   in   this  study  and  confirmed  the  results  represent  their  experiences  accurately.  The  methodology  of   the   study   is   provided.   This   gives   a   detailed   description  of   the  data  collection,  context,  perception  of  the  researcher  and  detailed  description  of  the  analyses  process   (Creswell  &  Miller,  2000)  This  allows   the   reader   to  enter   research  context’  (Creswell,  1998  in  Van  Hove  &  Claes,  2008)  to  understand  the  credibility  of  the  research  and  define  appropriateness  of  applying  results  to  different  settings.  An  ‘external   audit’   (Creswell,   1998   in   Van   Hove   &   Claes,   2008)   is   performed   by   the  promoter  of  this  master-­‐thesis  research.      This   study   tried   to   bring   in   triangulation,   by   approaching   the   phenomena   from  different   point   of   views   (Kuzel   &   Like,   1991   in   Cocoran   &   Stewart,   1998).   In   the  literature   review,   stammering   is   described   from   a   neurological,   psychological   and  sociological   perspective.   In   the   methodology   approach,   close   collaboration   with  different   parties   is   chosen   in   order   to   rules   out   a   singular,   unadapted   approach.  

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Further   a   closely   associated   approach   with   triangulation,   as   in   searching   for  disconfirming   evidence   (Miles   &   Huberma,   1994   in   Creswell   &  Miller,   2000),   was  applied   during   analysis   and   describing   results.   This   can   be   recognized   in   reporting  positive   and   negative   experience   as   well   as   contradicting   experiences.   This   can  improve   credibility,   supporting   the   constructivist’s   view   that   there   are   numerous  complex  realities  (Creswell  &  Miller,  2000).  

2.3.2  Transferability    Due  to  no  earlier  research  available  on  this  topic  in  this  context,  this  research  tends  to  explore  the  field  with  qualitative  research  with  a  relative  small  sample  size,  which  doesn’t   allow   generalization   (Patton,   1990   in   Cocoran  &   Stewart,   1998).  However,  the   purpose   is   to   illustrate   potential   experiences   and   highlight   the   importance   of  furthers   research   that  will   be  more   generalizable   for   the  whole   population   of   the  country  or  region.      Nevertheless,   when   possible,   attention   was   given   to   topics   allowing   some  transferability  under  careful  considerations  of  the  reader.  For  example  a  number  of  women  were   included   to   closely  meet   the  proportion  of  male  and   female  persons  who  stammer  and  the  attempt  to  spread  the  ages  of  participants.  Other  features  of  participants   are   described   carefully   and   detailed   description   of   timing,   context,  approach  and  by  illustrating  findings  with  quotes  of  participants  the  transparency  of  this  research  is  strengthened  (Creswell,  1998  in  Van  Hove  &  Claes,  2008),  permitting  the   reader   insight   in   possibility   and   limitations   for   transferability   (Zyzanski   et   al.,  1992  in  Cocoran  &  Stewart,  1998).    

2.3.3  Dependability    Prior   to   the   data   collection   it  was   questioned   if   participants  would   be  willing   and  open   in   sharing   their   experiences   due   to   living   experience   in   the   context   and  observing   limited   sharing   of   personal   experiences.   Therefore,   extended   attention  was   given   to   allow   the  participants   to   feel   comfortable   and  be  able   to   share   their  experiences.   The   extended   interviews   obtaining   multiple   detailed   positive   and  negative  experiences  ensured  openly   sharing   their   stories.  Remarks  of  participants  as  in:  ‘I  haven’t  told  this  to  anyone  before’,  ‘I  need  to  confess  …’  and  deep  personal  thoughts  and  experiences  reassure  experiences  were  not  polished.    The  goal  of  this  study   is   to  describe  the  uniqueness  of  every   individual  experience.      The  intention  is  not  to  observe  the  identical  experiences  over  again  but  to  illustrate  potential   experiences   and   demonstrate   how   different   factors   define   one’s  experience  and  therefore,  are  unique  for  every  person.        

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2.3.4  Confirmability    The  procedure  of  this  research  is  documented  in  detail  allowing  transparency  in  the  unique   set  up  of   this   research.   For   example,   describing   the   ‘unique  perspective  of  the  researcher’  that  clarifies  the  background,  reflection  and  approach.  The  promoter  of   this   master   thesis-­‐research   takes   on   the   role   of   ‘devil's   advocate"   (Creswell   &  Miller,  2000),  coding  data   independently  and  bring  in  a  critical  perspective  through  different  discussions.    This   research   applied   a   ‘reflective’   (Guba,   1981)   approach   by  multiple   discussions  with  GSA,  different  speech  therapists  and  a  person  with  personal  experience,  adding  up  to  the  reflection  of  the  unique  perspective  of  the  researcher  as  mentioned  above.        

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3.  Results  

3.1  Straining  and  supportive  reactions  to  speech  challenges      The   first   theme   bundles   ways   people   surrounding   participants   in   this   study   react  towards  their  speech  challenges.  Both  straining  and  supporting  reactions  are  shared.  

3.1.1  Stammering  explained      Growing   up,   participants   hear   different   ideas   of   what   causes   stammering.   Some  family   members   point   out   the   child   acquired   stammering   through   ridiculing   or  imitating  a  stammer.  This  opinion   is   supported  by   the   fact   that   they  did  not  speak  dysfluently  before  and  that  there  was  no  close  family  member  with  a  stammer.  The  person  is  not  born  with  the  stammer.  Participants  both  question  (2p)  or  approve  (6p)  it  to  be  the  cause  of  their  stammer.    

My  parents  too  tell  me  that  I  started  stammering  because  I  was  imitating  an  uncle  of  mine,  that  is  what  I  was  told,  I  imitated  and  that  is  how  it  got  started.  Kwesi    

 I   think   it   was   in   primary   school,   because   I   was   not   born   with   it.   I   am  suspecting   that   it  was   kind   of   over   time   I   try   to  mimic   a   few   colleagues   in  school  and  I  think  that  is  how  come  I  must  have  acquired  it.  Because  I  checked  with  my  family  and  they  say:  no  you  are  not  born  with  it.  Jerry  

 A   different   shared   assumption   for   cause,   states   that   the   stammer   is   passed  on  by  birth  or  through  family  bloodline,  because  participants  (4)  have  a  parent  or  another  family  member  who  also  stammers.      

It   is  a   family   thing.   In  my   family   too,  my  uncles,  my  mom  has   it  a   little   too.  Mabena  

 Participants   report   as  well,   how   friends   or   family   explain   stammering   by   believing  that   they   are   pretending.   The   stammer   is   not   constant,   does   not   always   occur   in  every   speaking   situation.   Someone   describes   how   this   concept   causes   him   to  stammer  more  in  the  presence  of  those  who  expressed  this  opinion.        

They  think:  why  is  it  that  when  I  am  speaking  to  friends  I  don't  stammer  but  when   it   comes   to   presentation,   I   stammer.   Why?   So   I   would   say   if   I   have  friends  -­‐  out  of  60  friends  50  of  them  think  I  always  pretend.  Of  course  if  they  say  that  it  then  makes  me  stammer  if  I  speak  to  them.  David    

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Further,  advices  on  how  to  eliminate  the  stammer  demonstrate  certain  opinions  of  cause.  Suggestions  vary  from  shouting  on  the  person  with  a  surprising  effect,  when  the  speech  is  dysfluent,  to  eating  something  like  honey,  or  a  certain  kind  of  leaves,  or  food  from  the  floor.  Others  refer  to  the  assumption  that  the  stammer  is  acquired  by   imitating,   the  stammer   is   learned,  and  so   the  person  should  now  “unlearn”   the  stammer  with  exercising  effort.  

3.1.2  Unfavourable  reactions:  I  stammer  -­‐  how  do  you  react?    Stammering   evokes   several   undesirable   reactions   from   persons   surrounding   the  participants   of   this   study.   On   the   one   side   there   is   the   lack   of   responding   by   not  talking  about  the  stammering  or  even  ignoring  a  person  who  stammers.  Opposite  to  these  are  punitive  reactions  due  to  unawareness  and  misconceptions.  Being  laughed  at  because  of  their  speech  is  something  all  participants  have  been  through  more  or  less   frequently.   Furthermore   expressed   perceptions   and   reactions   segregate  participants   as   being   different,   not   fitting   norms   or   expectations.   A  more   positive  intended  reaction,  however  still  unfavourable,  is  being  pitied  for  stammering.      Evading      Participants  share  that,  while  growing  up,  there  were  limited  to  no  opportunities  to  talk   about   their   stammer   or   related   experiences.   One   person   even   points   out   the  research   interview   is   the   first   moment   to   share   his   story   about   stammering   and  related  experiences.  Others  describe  the  silence  as  ‘a  normal  thing’,  their   ‘personal  cross  to  carry’  or  as  a  ‘taboo’.  Somebody  explains  his  family  would  not  talk  about  it  because  they  know  it  would  make  him  feel  bad.  More  active  evading  reactions  are  people  ignoring  or  avoiding  when  realizing  the  dysfluent  speech  of  a  participant.    

Sometimes  I  wanted  to  share,  some  experiences  or  bad  times  I  go  through,  …  because  my   family   has   created   that   environment,   they   not  wanting   to   talk  about  it.    So  even  now  that  I  am  grown,  I  don’t  know  how  to  begin  the  whole  process  of  start  talking  about  it.  Ato  

 From  impatience  to  punishment      Reactions  because  of  unawareness   and  misunderstanding   vary   from   impatience   to  physical  punishment:  at  school  or  at  work,  a  teacher  or  client  does  not  give  enough  time   for   a   participant   to   finish   speaking;   family   members   lack   understanding   and  start  complaining  or  blaming   the  person   for   stammering.  A  participant  got   scolded  and   beaten   by   his   mother   because   she   assumed   he   was   imitating   his   uncle   who  stammered.  Others  are   insulted,  punished  or  hit  by  a  teacher  who   is  unaware  that  the  person  is  not  able  to  answer  the  question  due  to  blocked  speech  being  part  of  

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the   stammer.   These   unfavourable   reactions   lead   participants   to   dislike   similar  situations,   continuously   being   uncomfortable   or   taking   precautions   in   related  settings.      

You   take   your   time   and   talk.   You   should   have   overcome   it   by   now.   They  (family)   just  been  frustrated  that   I   shutter,   that  am  stammering.  He  doesn’t  get  it  why  I,  if  I  am  on  phone  I  shutter  less.  If  I  am  with  friends  I  shutter  less,  but  why  is  it  that  when  I  come  to  him,  him  being  my  father,  why  I  shutter.  It’s  been  there  since  childhood,  him  being  strict  and  all,  all  has  contributed  to  it,  that  I  am  still  not  comfortable  in  his  presence.  Ato    

 I  remember,  there  was  a  French  teacher  and  that  stayed  in  my  head.  He  was  just  insulting  me:  “Tu  es  stupide,  tu  es  imbécile,  tu  es  idiote!”.  So  French  up  till  now  I  don't  do  French  only  out  of  that.  Erama    

 Laughing    During   school   years   all   the   participants   experienced   peers   laughing   when   their  speech  was  not  fluent.  This  was  more  frequent  from  primary  until  junior  high  school  and  reduced  commonly  during  secondary.  However,  for  others  this  could  increase  in  this  period.  Memories  are  shared  of  the  whole  class   laughing,  sometimes   including  the  teacher.  Participants  describe  these  experiences  as  tough  and  hurtful,  resulting  in   the   decision   not   to   speak   in   class   again   or   wanting   to   quit   school.   This   was  experienced  so  often  that  participants  got   to  describe   this  as   ‘normal’.   In   line  with  this,  stammering  is  often  the  subject  in  daily  ‘jokes’.  When  the  participants  got  older,  laughing  at   their  speech  reduced,  which  was  then  explained  by  people  being  more  mature   and   understanding.   Laughing   at   stammering   can   however   still   take   place  occasionally  during  adulthood.      

Our   teacher   gave   us   a   book   and   asked   each   of   us   to   read   a   paragraph.   So  when   it   came   to  my   turn,   the  whole   class  was   laughing  at  me.   Since   then   I  vowed  not  to  speak  in  class  again.  Steven  

 We  used  to  have  this  session  for  jokes,  so  most  of  the  time  this  jokes  had  to  do  with   stammering.   …   deep   inside  me,   I   know   it   is   crazy.   I   know   it   has   a  direct   impact  on  me,   though  we  all   laugh,   I   am   laughing  outside  but   inside  not.  Michael  

 Othering      Specific   perceptions   and   expectations   expressed   by   the   environment,   discriminate  participants  on  personality   traits,  how  qualified  they  are   for  certain  professions,  or  

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being  perceived  different  from  normal.      Distinguishing  can  result  simply  from  staring  at  the  person  while  speech  is  dysfluent.  Or   in  using  particular  personality   traits   to  describe  participants:   for   example  being  called   timid   when   refusing   to   be   the   Master   of   Ceremony   for   a   program.   Peers  describe  someone  as  antisocial  because  of  only  talking  to  people  in  whose  presence  one   feels   comfortable.   One   participant   explains   how   she   internalized   these  perceptions   of   others   but   realized   this   is   not   how   she   actually   is   but   how   certain  behaviour  is  interpreted.  Even  more,  a  client  literally  advised  a  participant  to  change  his  job  in  sales  because  of  his  speech.      Participants  are  confronted  with  the  fact  that  people  need  to  speak  fluent  to  be  seen  as   qualified   in   their   professional   role   or   to   perform   certain   occupations   like  journalism  and  teaching.      Participants   show   the   complexity   of   internalizing   and/or   obtaining   these   opinions  from  others   themselves.   It   is   reported   that   society   is   obsessed  with   fluent   speech  and  that  people  see  you  as  different  from  normal  and  even  classify  you  as  disabled  and  therefore  for  example  not  fit  as  a  partner.        

I  have  come  to  accept  being  shy  because  it  becomes  a  part  of  me  because  you  avoid  people.  …  And  the  way  they  term  that  is  being  shy.  It  makes  more  sense  where  it  is  like  I  know  I  am  not  shy  but  it  is  how  it  is  interpreted  as  being  shy.  Because  when  you  get  to  know  me  and  we  are  laughing  I  don't  come  across  as  the  shy  girl.  Because  I  am  not.  Erama      Our  part  of  the  world  they  have  this  mind  set  on  people  who  have  that  speech  deficiency  they  are  some  how  different  from  normal  person,  I  know  how  they  see  us.  Steven    

Pity    Some  people  demonstrate  sympathy,  however,  unfavourably  expressed  as  pity.  One  participant  mentions  people  feeling  sorry  for  him  and  avoiding  eye  contact  when  he  is  talking.  Others  offer  prematurely  help  by  completing  sentences  or  talking  for  the  person  in  a  meeting.  In  school  this  can  be  a  teacher  asking  a  student  who  stammers  to  sit  down  to  prevent  embarrassment.    

Some  teachers  think  they  are  helping  me  out  by  not  asking  me  questions.  At  the  university,  when  we  are  doing  some  presentation  and  stuff  most  of  them  skip  my  part.  But  I  would  be  happy  if  they  had  some  time  for  me.  Steven      

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3.1.3  Support      Besides   undesirable   reactions,   participants   share   multiple   supportive   experiences,  received  from  various  people  in  their  social  network.      Family    Parents  can  demonstrate  patience  and  may  advise  to  see  a  speech  therapist.  Siblings  are   described   to   be   able   to   offer   moral   support   and   encouragement,   and   to  recommend  not  to  mind  others  opinion.  Furthermore,  participants  can  share  difficult  moments  or  discuss  certain  aspects  of  stammering  with  their  family.  Partners  can  be  accepting,  encouraging  and  understanding.      

So  my  older   sister,   she   is   actually   the   first   one.   I  was   complaining  about   it,  about  a  month  and  a  half  ago.  She  said  that  from  her  opinion  I  should  just  try  to  accept  the  fact  that  I  stammer,  I  should  try  my  best  to  deal  with  it.  I  should  feel  free  anywhere  I  go,  and  I  shouldn't  think  it  is  trouble.  She  is  actually  the  reason  why  I  decided  that  I  wouldn't  think  of  the  opinions  of  others.  And  that  it  is  high  time  I  accept.  Ben    

 Friends    Friends   equally   express   their   support   by   accepting   the   person   and   the   stammer.  Then   participants   feel   comfortable   with   them,   also   if   their   speech   is   dysfluent.    Friends  can  also  encourage  doing  something  in  spite  of  the  stammer,  or  sticking  up  for  the  person  if  others  laugh.  However  one  participant  perceives  the  latter  as  if  he  can’t  defend  himself.      

I  have  this  friend  from  Senior  High  school,  up  to  now  we  are  friends  now.  He  is  comfortable;  he  can  look  me  in  the  eye,  he  waits  for  me  to  finish,  so  I  am  free  with  him,  I  can  even  can  even  shutter  freely,  I  can  even  stammer  freely.  Ato    

 I   am   terrified  going  anywhere  alone.   I   always  need   that  back  up.  You  don't  have  to  do  anything.  Just  when  I  have  a  friend  of  two  with  me  when  I  go  to  a  place,   it   is  easier.  So  some  of   them  they  will   know  that   if   it   is  an   important  meeting,  their  job  is  to  deal  with  the  small  talk  and  that  it  flows  enough  that  I  relax  and  flow  with  it.  Erama    

 Teachers  and  employers    Participants   describe   teachers   demonstrating   patience   by   giving   time   to   answer  questions.   They   can   make   a   participant   feel   relax   and   feel   free   to   speak.   Other  

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teachers   are   able   to   prevent   class   from   teasing   or   encourage   a   student   who  stammers  to  take  on  a  leadership  role.      At  work,   support   is   experienced  when  employer  or   co-­‐workers  make   a  participant  feel   comfortable,   understood   or   given   opportunities.   Any   other   person   can   be  helpful  and  accommodating  by  being  patient.  One  employer  sets  an  unique  example  by  financing  speech  therapy.      

But  those  I  was  with  in  the  same  class  they  would  not  tease  me.  Because  my  class  teacher  by  than  told  then  they  should,  they  chose  me  to  be  the  class  captain,  so  they  shouldn't  take  me  for  granted  because  of  my  condition  or  tease  me  or  do  bad  to  me  because  they  chose  me  to  be  class  captain.  Albert      

 Professional  therapy    Only   limited   participants   of   this   study   have   limited   participants.   For   one   person   it  was  positive,  however  felt  as  ‘too  late’.  She  states  it’s  more  effective  if  followed  at  a  young   age,   before   patterns   to   deal   with   stammering   are   formed.   Another   person  describes   therapy   as   stressful   and   difficult   to   continue.   Participants   recognize   the  need  and  desire   for  professional   support;  however,   they  have  no  knowledge  of   its  existence   in   Ghana.   They   would   consider   therapy   if   they   could   afford   it   and   felt  ready.  

 I   remember   the   two   things:   it   is   ok   to   stammer,   this   is  me   and   take   it   all.  Erama    

 I   will   say,   any   time   I   enter   in   to   her   office,   it   makes   me   feel   like   I   am   a  stammerer.   It  made  me   very   conscious   of  myself.   It  makes  me   tensed,   very  very  tensed,  extremely.  …  It  is  like  H.  speak  speak  speak  speak.  David      Generally  there  is  no  institution  I  know  of  to  handle  anybody  that  stammers.  In  our  schools  nothing  happens,  no  guidance  no  speech  therapy,  nothing.  So  either  you  get  the  privilege  I  have,  to  get  over  it  over  the  time.  Yaw  

 Religion    Participants  find  courage  in  their  beliefs.  They  describe  gaining  encouragement  and  strength  to  continue.  For  someone  religion  even  makes  him  see  a  purpose  in  having  a  stammer.  Furthermore,  attending  church  service  every  week  or  participating  in  the  choir  or   Sunday-­‐school   are   sometimes   the  only   social   activities  participants   attend  to,  and  moreover,  no  undesirable  reactions  are  reported  in  this  context.        

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I  believe  the  creator  as  God,  he  has  a  purpose  for  doing  everything  so  I  believe  there  is  a  reason  I  have  this.  Kofi    I  would  say  God.  Looking  at  where  I  am  coming  from,  combining  stammering  with  my  education  was  very  hard,  difficult,   so   it  was  only  God  who  saw  me  through  it,  I  wouldn’t  have  done  it  on  my  own,  because  I  pray  him  to  answer  me.    Ebo    

3.2  Stammering  contains  more  than  speech  challenges    The   second   theme   portrays   experiences   of   the   invisible   part   of   stammering.   This  encloses  emotions  and  restricted  social  participation.    

3.2.1  Feelings    Fear  

It  is  very  big.  I  don't  think  we  can  put  it  in  words  enough.  What  fear  does  to  us,  the  impact  on  our  lives.    Erama  

 Different  kinds  of  feelings  are  described,  of  which  the  most  prominent  appears  to  be  the  fear  related  to  talking.  Participants  are  nearly  always  afraid  for  the  stammer  to  occur,   or   scared   for   reactions   from   others   like   laughing   or   impatience.   This   fear  increases  particularly  when  meeting  a  new  person.  A  participant  explains  this  fear  as  not  knowing  what  reaction  to  expect.  At   school   there  can  be   fear   to  answer  questions,   to   read  out   loud  or   to   talk   to  an  audience.   Job   interview   is   described   in   terms   of   “hating   it   or   never   wanting   to  experience  it  again”.  Another  potential  situation  for  fear  is  talking  to  someone  of  the  opposite  sex  or  to  a  supervisor  at  work.    

 At  times  when  you  are  even  asked  questions.  For  a  fear  of  being  laughed  at  if  you  didn't  know  the  person  you  don't  want  to  even  come  out.  Kwesi          When  it  comes  to  that  the  moment  am  asked  a  question  in  the  mix  of  people  I  become  so  frightened.  Because   I  know  I  would  definitely  stammer.  Which   in  society  you  be  laughed  at,  definitely  you  be  laughed  at.  That  is  it.  Mabena    

   Embarrassment  and  frustration    When   speech   is   not   fluent,   participants   very   often   experience   embarrassment   or  frustration  because  the  sharing  of  an  opinion  is  impeded.  When  this  happens,  anger  and  distress  can  be  felt.  A  different  kind  of  anger  is  when  participants  recall  reacting  aggressively  towards  those  who  teased  or  bullied  them  at  school.  

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I   did   the   presentations,   some  were   very   embarrassing,   I   just   didn't  want   to  come  to  school  anymore.  I  just  can’t  watch  the  video.  The  length  is  like  15  min  but  if  I  watch  it  for  a  minute  I  just  cant  watch  no  more.  David      

 Feeling  down    Participants  express  also  to  have  felt  sad  or  upset  due  to  reactions  of  others.  They  feel   they  have  missed  opportunities   and  developmental   challenges  because  of   the  stammer.   Furthermore   participants   mention   that   accumulated   feelings   and  experiences  led  or  added  to  suicide  thoughts.    

Emotionally   I   am   usually   down,   the   reactions   of   people  make  me   feel   bad.  Sometimes  not  the  reactions,  even  if  the  person  is  patient  and  understanding,  even  if  (I)  have  spoken  and  I  stammered,  I  (am)  still  sad.  Ben    

 Accepting  stammering?      Besides   emotions   participants   describe   challenges   in   the   psychological   process   of  accepting  stammering.  These  are  discussed  in  various  ways.  Participants  report  how  accepting   their   stammer  depends  on   the  opinions  of  others,   saying   that  once   they  stop   minding   the   opinions   of   others,   acceptance   is   easier.   Acknowledging   the  stammer  is  possible  with  certain  people  but  not  with  everyone.  Another  participant  states  that  it’s  necessary  to  eradicate  the  stammer  in  order  to  improve  his  chances.      

Now  I  try  not  to  care  about  it,  I  decided  a  few  months  ago  that  it  is  how  I  am,  if   I   cant  do  anything   to   really   change  who   I  am,   I   think   it   is  high   time   I   just  accept   who   I   am.   If   anyone   doesn't   accepts   me   in   a   way   it   is   their   own  problem.   I   just   started   to   feel   that  way,   it   is  not   that   I   feel   that  way  all   the  time,  I  am  trying.  Ben    

 Remarkable  is  when  participants  do  not  see  or  refer  to  themselves  as  a  person  who  stammers,  or  do  not  consider  stammering  as  part  of  their   identity:  the  presence  of  the   stammer   is   not   denied   but   limited   to   its   actual   occurrence.   For   example  identifying  with  the  stammer  was  there  when  it  was  more  frequent  at  a  younger  age,  and  currently   limited  to  the  presence  of  stammering  on  certain  words  or   in  certain  situations.      

If   I   speak   to   someone   and   they   say   “Oh   H.   You   are   a   stammerer?”,   even  though   I   Say   “Yes”,   in  my  mind   I   say   “I   am  not   a   stammerer”.   I   am  only   a  stammerer  if  I  can’t  speak,  if  I  am  finding  it  difficult  to  than  speak.  David          

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3.2.2  Restricted  participation    Like  …  its  …  it  doesn’t  make  me  do  …  what  I  want  to  do  and  what  I  want  to  say,  who  I  want  to  be,  where  I  want  to  go,  how  I  want  to  be  like.  Kofi  

 Participants  describe  different  gradations  of  concealing  the  fact  that  they  stammer,  avoiding   speaking   situations   or   restricting   participation   in   certain   activities.   This   is  situated  in  different  contexts  such  as  school,  social  life  and  professional  occupation.      

I  don't  think  we  even  know  that  we  are  hiding  intentionally.  But  I  think  we  all  hide  it,  but  because  we  are  hiding  it,  we  (are)  always  troubled.  Erama    Even   though   she  has  accepted   that   I   shutter,   I’m   still   coming   to   terms  with  that,  I  feel  I  don’t  want  her  to  see.  Even  though  I  shutter  one  or  two,  I  try  my  best  not  to  shutter  to  severe.  Ato  

 Education:    “To  ask  or  not  to  ask,  that  is  the  question?”    

Talk  less,  so  it  means  I  stammer  less.  Eric    During  the  years  in  school  and  university  participants  report  reducing  the  frequency  of  talking  to  prevent  peers  from  laughing  or  to  avoid  the  stammer  showing  up.  Ways  to   achieve   this   could   be   participating   less   in   class   by   pretending   not   to   know   the  answer   or   whispering   it   to   a   friend.   Participants   could   undertake   more   invasive  measures   like  going   to   the  bathroom  each   time   it   came   to   their   turn   to   read,   skip  classes  or  avoid  taking  up  certain  positions  by  staying  at  home  on  the  election  day.  Due   to   lacking   awareness,   teachers   misinterpreted   these   actions   in   thinking   the  student  was  stubborn,  never  knowing  the  real  reason  why.    

I  would  rather  sit  down  and  pretend  I  don't  know.  Mabena    

From  Senior  High  School  (to)  my  final  year  I  played  hide  and  seek  with  them  (teachers).  Some  noticed  but  they  were  thinking,  since  I  skipped  their  class,  I  was  being  stubborn.  They  never  knew  real  reason.  Steven  

 Social  life  

I  am  very  social,  with  (who)  I  want  to  be  with.  Kojo    Trying   to  avoid   the  stammer   frequently   takes  place   in  social   life  and   therefore  can  affect   it.   Participants   mention   contributing   less   in   conversations   with   friends   or  limiting   interactions   with   people   in   general.   They   restrict   themselves   to   address  crowds   or   sing   in   front   of   an   audience   even   though   they   know   they   have   the  capacities   for   it.  More   specific  ways  of   avoiding   can  be   replacing  words  by   a  

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synonym   or   translating   it   in   another   language.   Another   participant   shares   that   he  drinks   alcohol   to   relax   and   to   enable   him   to   speak  more   fluently,   even   though   it  creates  other  challenges.      These  avoiding  measures  can  impact  social  life  in  various  ways:  friends  not  knowing  at  all  that  the  person  stammers;  participants  not  engaging   in  free  time  activities  or  keeping   opinions   to   themselves.   Someone   formulates   the   stammer   prevents   him  from  being  himself,  a  calm  though  outgoing  person.  However,  participants  state  as  well  that  for  them,  participating  less  in  social  activities,  should  not  be  confused  with  restricting  themselves,  it  is  their  preference  or  personality.      

Maybe   you   have   some   ideas   or   something   you   like   to   share,   but   you   are  wondering  weather  if  you  begin  you  end  up  stammering.  Eric  

 So   like   this  girl,   and   I   didn't  want  her   to   know   that   I   stammer,   so   I   used   to  drink  whenever   I  meet  her.  When  I  am  drunk,   it   is  the  same  thing   like  when  you  are  relaxed,   I  don't  stammer.  But  she  didn't   like  alcohol  too  when  I  was  with  her.  And  I  didn't  want  her  to  know  that  I  stammer.  I  am  not  proud  if  that.  It  solves  my  issue  that  I  stammer.  But  my  drinking  too  has  his  own  problems.  Kojo  

 Professional  life:  ICT  or  statistics  versus  law  or  journalism    In   the   professional   context   participants   clearly   experience   being   restricted   by   the  stammer,   taking   it   into   account  while   choosing  a   career  based  on   its   demands   for  talking.   Therefore   IT   can  be   chosen  over  business  or   computer   science  –   it   can  be  selected  even  though  interest  for  it  still  has  to  develop  over  time.  Others  will  divert  from  law  studies  or  not  follow  a  childhood  passion  for  acting.  A  participant  shares  he  would   have   liked   to   study   something   different,   and   would   have   chosen   another  career   and   would   have   been   able   to   achieve   more   if   it   was   not   because   of   the  stammer.   Besides   this,   participants   describe   as   well   following   career   choice  aspirations  to  their  field  of  interest  without  considering  their  stammer.      

Business,  there  is  more  probability  of  more  talking.  So  I  am  like,  no,  I  am  not  getting  in  to  business  school  I  am  going  for  IT  program,  because  I  knew  what  I  wanted  to  do.  I  read  about  it.  I  read  a  lot  about  careers,  like  which  career.  So  I  learned  that  IT,  you  won’t  talk  much,  it  is  all  about  getting  the  job  done.  So  I  think  now  because  of  the  shutter  I  have  taken  this  particular  path.  Ato    

A   job   interview   is   described   as   highly   challenging   to   speech   fluency.   Moreover,  participants  report  that  when  the  speech   is  dysfluent  during  the   interview,   it   limits  their  chances  to  be  selected  significantly.    

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 ‘Job  interview,  “I  hated  it”.    If  I  can't  find  a  job  I  will  create  one.’  Erama.      

So  I  apply  for  teaching  job  in  some  school  and  than  the  head  of  that  school,  told   me   that   how   come   a   stammerer   (wants   to)   teach   in   a   class.   So   the  moment  the  man  said  that,  I  felt  so  bad.  And  than  I  told  him  to  give  me  chalk  and  give  me  an  hour  to  meet  the  class  and  teach  for  them  to  judge  me.  The  man  was   like  doubting,  he  sent  me  out  of  the  office  not  to  come  there.  So   I  spoke  to  some  few  teachers  that  they  should  plead  on  my  behalf.    This  time  the  man  gave  me  an  hour  to  go  meet  the  form  three  class.  I  went  there  and  than  I  taught.  I  chose  a  math’s  topic  that  was  a  change  of  topic.  I  didn't  look  (in)  any  text  book.  I  taught  the  class  for  an  hour.  Than  the  man  came  to  the  class  and  asked  me  to  go  and  wait  for  him  at  the  staff  common  room.  So  he  judge  me  with  the  students.  But,  grace  to  God,  the  class  told  him  I  was  good  and  they  didn't  know  that  I  am  a  stammerer.  Albert  

 Executing  a  profession,  participants  search   for  ways  to   limit   talking.  This  can  be  by  restricting  answers  to  yes  and  no  or  working  very  precisely  to  prevent  mistakes  that  will  have  to  be  explained.  Someone  else  would  work  hard  to  increase  the  chance  to  receive  the  same  assignment,  that  doesn’t  require  talking,  again.  Hard  work  can  also  be  applied  to  become  your  own  boss,  being  able  to  decide  yourself  when  and  where  to  talk.  This  allows  as  well  sending  someone  or  going  together  with  an  employee  to  meetings.    

Well,   you   know,   the   truth   is,   if   you   stammer   in   front   of   your   boss   or   your  supervisor  or  even  your  colleagues,   it   really  brings  you  down.   It  affects  your  self-­‐esteem.   So   I   don't   talk   much   in   office   and   I   almost   make   my   answers  short.  I  usually  stick  to  yes  or  no.  Steven      

3.3  Who  am  I  and  what  can  I  do?  

3.3.1  Much  more  besides  stammering!    

I  stammer  whatever!  I  know  whatever  you  can  say  I  can  also  say!  Kojo    Sharing  their  story,  participants  demonstrated  how  intrinsic  characteristics  being  of  support   in  dealing  with   stammering  or   increasing   resilience   towards   the   impact  of  challenges  related  to  stammering.    For  one  participant  this  is  having  developed  a  strong  will,  being  optimistic  and  liking  challenges,   allowing   him   to   work   on   his   stammer.   Another   person   is   very   social  which  developed  his  self-­‐confidence.  Someone  finds  encouragement   in  knowing  he  

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is   a   good   student,   in   hard  working   and   in   his   a   sense  of   humour.   This   shows  how  identity  and  personality  can  counter  the  impact  of  stammer.      

I  think  I  am  a  strong  willed  person.  I  have  a  strong  will.  Very  optimistic.  I  love  to   take   challenges,   very  difficult   challenges.   I   think   that  has   really,   that   self  fighting  ability,  I  think  has  really  helped  me.  Michael    

 I  try  to  come  out  and  not  allow  anything  to  hinder  me.  For  me,  I  try  to  be  me,  irrespective  of,  I  try  to  be  me.  Kwesi    I   was   just   this   loud   guy,   playing   with   everybody   and   all   that.   Though   the  stammering  was  there,  don't  care,  let’s  play.  Yaw  

 Talents    Being  talented  is  also  described  as  helpful.   It   improves  confidence  and  self-­‐esteem.  One  can  be  very  qualified  for  graphic  work,  or  being  a  competent  teacher  being  able  to  teach  without  stammering,  or  being  a  talented  singer  or  musician  and  perform  in  front  of  an  audience.    

I  was  called  for  an  interview.  I  had  to  introduce  myself  but  I  stammered  a  bit,  and   they   told   me   that   I   should   not   worry   so   much   about   the   stammering  because  my  work   is  good,   it  speaks  for   itself.  As  soon  as   I  heard   it,   I   think   it  really  built    my  confidence.  So  I  started  to  speak.  David    

 When  I  am  teaching  I  hardly  stammer.  When  you  know  what  you  are  about  to  teach  you  don’t  feel  nervous.  Eric    

3.3.2  How  to  deal  with  stammering?    

I  think  you  adopt  things  depending  on  your  nature,  your  circumstances,  your  environment,   your   family,   everything.   You   come   out,   we   all   come   out   with  different  things.  So  what  I  might  do  will  be  different  from  what  somebody  else  will  do.  Erama  

 Fluctuation    Participants   report   how   stammering   can   fluctuate   over   time   and   in   different  situations.   It   is  described  how  there  are   times  or  moments   that   speech  dysfluency  increases  or  goes  down.  Yet,   it   is  difficult  to  know  the  specific  triggers.  Therefore  a  person  calls  his  stammer  a  mystery.      

At   times   it   comes   so  much   that   before   I   talk   I   have   to   struggle,   some   two  months,   some   three  months.   Than   after   it   calms   down   and   I   can   talk  

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freely.  It  is  something  like  a  chronic  thing.  That  is  how  I  experience  it.  Mabena      

I  wish  I  could  find  that  something.  As  soon  as  I  wake  up  the  first  word,  it  tells  me  if  I  am  goanna  be  fluent  or  not.  David    

 There   are   certain   situations   or   contexts   in   which   participants   commonly   describe  increased  dysfluency,  such  as  in  particular  school  tasks,  a  job  interview  or  talking  in  a  public  setting.      Pragmatic  approach      

Everybody  has  to  talk  one  way  or  the  other.  Kwesi    Besides   intrinsic   talents   participants   share   actions   that   help   them   manage  stammering.   The   following   illustrates   different   aspects   such   as   searching   for   a  comfortable   environment,   breathing   techniques,   personal   adaptations,   active  working  on  or  disclosing  the  stammer.  Participants  mention   that   feeling   relaxed   and   comfortable   limits   dysfluent   speech,  they   can   achieve   this   if   feeling   upset   or   angry   is   avoided   and   pressure   reduced.  Therefore   someone   can   search   for   the   company   of   friends   or   people   who   won’t  laugh.  Others  can  find  common  interest  to  talk  about  or  use  humour  to  break  the  ice  and   create   the   preferred   environment   to   speak   comfortable.   However,   feeling  comfortable  can  also  allow  the  stammer  to  occur  more,  because  they  feel  no  need  to  control  it.      

I  think  the  basic  thing  for  me  is  keeping  a  calm  composure.  Once  you  are  very  calm,  relaxed  and  comfortable  I  think  it  is  easy  for  the  speech  to  flow.  Kwaku  

 (I)  introduce  some  humour  in  there  just  to  make  the  environment  very  soft.  So  that  the  focus  is  not  on  the  stammer.  Jerry    

 Several   ways   are   described   to   work   actively   on   stammering.   Taking   time   while  talking  and  paying  attention  to  breathing,  because  speaking  in  haste  can  bring  about  the   stammer.   Participants   practice   speech   by   means   of   a   tape   with   exercises   on  challenging   sentences.   Someone   will   have   an   image   in   mind   of   how   he   wants   to  come  across  and  imitate  that  image  when  giving  a  presentation  or  during  a  meeting.  It  has  also  been  shared,  that  making  sure  to  know  the  content  very  well  concerning  certain  aspects  of  the  job,  proved  to  increase  fluency.        

Psychologically,  I  think,  in  my  mind  I  create  an  image,  I  create  a  personality  in  my  mind,   I   try  to   imitate  that.   It   is  not  always,   it  depends  on  the  audience   I  

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am   talking   to.   You  pick  a   favourite  guy   you   like   to  watch,   it   is  Obama  who  ever.  Than   I  play,   it   is  more  of  acting.   I   think   that   I   like   the  person,   so   I   see  some  traits.  It’s  a  trait  because  you  need  to  absorb  it  and  than  you  amplify  it  in  your  actions  and  your  speech.  Jerry  

 Additionally   participants   find   personal   approaches   to   manage   situations   that   are  challenging  for  them.  For  someone  that  is,  sitting  in  front  of  the  class  to  reduce  the  distance  to  the  teacher  when  answering  a  question.  Another  person  will  be  the  MC  of  a  group-­‐work  presentation,  so  he  can  participate  however  doesn’t  have  to  talk  a  lot.  A  radio  interview  can  be  recorded  upfront  to  reduce  pressure  and  to  be  able  to  to  approve  or  redo  it  before  airing.    To  manage  challenging  phone  calls  a  participant  will  cough  to   let  the  other  side  know  her  presence  when  the  words  aren’t  coming.    At  work,  meetings   are   supported  with  diagrams   to  produce   flow,  or  prepared  and  contributed  to  on  paper.    Challenging  oneself      In   courageous  ways   to  work   on   stammering,   participants   challenge   themselves   to  reduce  or  prevent  the  stammer  from  limiting  them.  This  could  be  frequently  putting  your  hand  up   in   class   to   read  or  answer  questions   in  order   to   control   the   fear   for  these  activities,  or  participate  regularly   in  social  groups  requiring  talking   in  front  of  an   audience.   Someone   challenges   himself   in   contributing   to   conversations   where  before  he  only  listened.  Another  person  makes  sure  to  sometimes  leave  his  comfort  zone.   In   line   with   this   participants   can   work   on   their   confidence,   which   supports  them   in  managing   the   stammer.  Others   don’t   allow   it   to   limit   or   bother   them   for  example  by  controlling  negative  thoughts.    

In   fact,   telling  my   story   I  wont   leave  Sunday   school   (in   church)  out  because  that  has  helped  me  build  my  self  confidence  to  even  stand  in  front  of  people,  not  large  group  but  at  least.  Mabena    

 So  it  is  either  I  stay  in  my  room  and  tell  myself  I  am  going  to  be  a  stammerer  for  life  and  just  be  there  but  if  I  tell  myself,  maybe  next  five  to  six  years  I  want  to  be  a  successful  graphic  designer,  if  it  is  going  to  be  tough  for  me  I  still  have  to   go   through   it   because   it   is   life.   So   I   know,   I   am   very   sure.   I   don't   see  stammering  to  be  a  block  in  my  success.  David    Lets  say  I  have  a  bad  stammer  in  a  day,  it  may  worry  me  until  evening  and  the  next  day  I  wake  up  and  have  a  good  day,  end  of  story,  it  is  done.    Jerry  

     

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Accepting  and  disclosing    Participants  share  that  accepting  stammering  enables  them  to  deal  with  it  or  to  find  ways   to   work   on   it.   Accepting   is   something   participants   try   and   will   sometimes  succeed   in,   other   times   they   still   feel   like   hiding   their   stammer.   Someone   tells  understanding   or   explaining   stammering   benefits   acceptance.   In   line   with   this  participants   can   disclose   their   stammer,   which   reduces   fear   and   makes   sure   the  listener  understands  the  situation  better.  This  could  be  a  teacher  disclosing  towards  hiss  class,  or  someone  disclosing  his  stammer  in  a  job  interview  or  to  a  new  person.    

So  I  feel  as   I  have  accepted  it  now,  that  I  have  a  stammer,  but  not   in  a  way  that  I  have  accepted  in  that  I  don't  want  to  try  and  find  a  way  to  minimize  it  or  go  away.  Ben  

 Yes  at  times  when  I  am  talking  to  them  I  have  to  tell  them  my  challenge.  …  If  I  don't   want   the   person   to   have   perception   or   the   impression   that   it   is  intentionally.  So  once  I  start  talking  and  it   is  coming  I  say,  boss  I  stammer  a  bit  so  just  try  and  bear  with  me.  Kwesi    

3.3.3  Positive  influence:  not  all  bad    Not   generally   agreed   to   however,   some  participants   share   how  having   a   stammer  had   a   constructive   effect   in   a   particular   area.  A  participant   tells   to   have  mastered  summarizing,   which   developed   his   capacities   for   logic   and   improved   his   overall  problem-­‐solving   skills   or   finding   the   determination   to   become   the   head   of   a  successful  real  estate  company.  For  another  person  it  has  made  him  come  closer  to  friends  who   understand   and   encourage   him.   Another   participant   explains   how   he  explored  other  talents  besides  speaking  and  put  all  his  time  and  energy  to  become  the  promising  graphic  designer  he  is  today.  

 Personally,   it   may   be   very   positive.   It   made   me   love   adventure.   As   in  researching  in  to  things.  Stammering  made  me  read,  normally  reading  would  not  be  part  of  me.  I  have  loved  reading.  I  have  gotten,  I  have  mingled  with  a  number  of  social  groups  and  clubs  that  actually  gave  me  a  lot  of  networking.  Michael  

 Shutter   has   played   a   role.   A   mayor   role   for   me   being   hard   working   and  challenging  myself,  because  of  the  shutter.  Yes   it   is  a  blessing;   it   is   just   that  my  mind  was  not  on  it.  Ato        

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4.  Discussion    Ghana   Stammering   Association   and   the   only   speech   therapist   who   focuses   on  stammering,  among  a  total  of  five  speech  therapists  in  Ghana,  are  working  together  to  raise  awareness  on  stammering.  There  is  a  high  suspicion,  but  yet  to  be  confirmed  by  research,  that  the  prevalence  of  PWS  in  Ghana  is  high  compared  to  the  average  of  one   percent   in   other   populations   as   reported   in   literature.   There   is   no   previous  research  available  on  stammering  in  Ghana  or  the  whole  West  Africa.  Therefor  this  study   explored   the   lived   experiences   of   adults  who   stammer   in  Ghana   in   order   to  broaden   the   understanding   of   the   phenomenon,   reveal   the   current   level   of  awareness,  identify  what  is  supportive  and  inform  policy  to  incorporate  the  needs  of  PWS.  

4.1  Discussion  of  results      Misconceptions    The  results  of  the  present  research  explore  the  experiences  of  people  who  stammer  and   demonstrate   the   rather   unique   experiences   of   participants   in   terms   of  misconceptions  of  how  stammering  is  acquired.  Mostly,  family  members  point  out  to  participants   that,   the   cause   of   their   stammering   is   through   ridiculing   someone   or  imitating   their   dysfluent   speech.   Another   misconception   about   cause,   consistent  with  previous  studies,  is  the  notion  that  a  person  is  pretending  to  stammer  because  the   stammer   is   not   regular   (Flynn   &   St.   Louis,   2011).   Both   explanations   of   cause  place   the   responsibility   of   acquiring   the   stammer   in   the   individual   person.  Additionally,  participants  can  encounter  people  who  suggest  myths  about  'cures’  or  ways   to   eradicate   the   stammer.   Misconceptions   on   stammering   are   previously  reported   by   PWS   in   qualitative   research   or   mentioned   in   research   on   others’  perceptions  of  PWS  (Hearne,  2008;  Craig  et  al.,  2003;  Gabel  et  al.,  2004;  Hughes  et  al.,  2010;  Langevin,  2009).  A  more  accurate  assumption  on  how  participants  reason  to  have  acquired  their  stammering  is  gaining  it  by  birth  through  the  family  bloodline  because  a  parent  or  other  family  member  also  stammers.  This  can  be  confirmed  by  the   inheritable   nature   of   stammering   revealed   in   genetic   research   (Dworzynski,   et  al.,  2007;  Rautakoski  et  al.,  2012).    Straining  reactions  of  the  environment    Besides   misconceptions,   participants   have   to   deal   with   various   unfavourable  reactions   from   people   in   their   surroundings.   These   unfavourable   reactions   can  impact  them  in  different  ways.    First,   there   is   a   lack   of   reaction   of   people   on   the   stammer.   This   creates   an      environment   in   which   participants,   while   growing   up,   cannot   talk   about   their  

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stammer  or  its  related  experiences.  Participants  in  other  research  equally  share  not  talking  about   their   stammer   (Blood  et   al.,   2003).   This   reveals   a   straining  nature  of  challenges  that  a  minor  has  to  deal  with  alone,  and   it  can  also  give  the   impression  that  stammering  is  not  acceptable  (Hearne  et  al.,  2008).    Potentially  due   to  placing   responsibility  of   acquiring   the   stammer   in   the   individual  person,   participants   report   reactions   of   family   members   such   as   complaining,  blaming,   shouting  and  physically  punishing   them   for   speaking  dysfluently.   This   can  happen  in  school  as  well  because  a  student  is  often  misinterpreted  when  he  or  she  gets   stuck   on   words   and   cannot   answer   a   question.   These   experiences   clearly  illustrate   how   stammering   can   impact   the   relationship   with   parents   (Klompas   &  Ross,   2004)   and   every   day   school-­‐life   (Blood   &   Blood,   2004;   Davis   et   al.,   2002;  Langevin  et  al.,  1998;  Murphy  &  Quesal,  2002)  due  to  the  lack  of  understanding  and  impatience  (Erickson  &  Block,  2013).    School  life  can  be  further  impacted  by  the  multiple  experiences  of  being  laughed  at  when  the  stammer  occurs.  This  takes  place  mostly  during  primary  school  and  hence  primary  aged  children  who  stammer  experience  a  higher  risk  to  be  teased  (Langevin  et   al.,   1998;  Davis,   et   al.,   2002).   For   some  participants   in   the  present   study,   these  reactions   become   more   frequent   during   secondary   school.   This   confirms   the  likelihood   that   adolescents  who   stammer   become   targets   of   bullying   (Davis   et   al.,  2002;   Evans   et   al.,   2008).   In   adulthood   being   laughed   at   while   stammering   takes  place  occasionally  likewise  participants  in  Klein  and  Hood  (2004)  who  mention  being  mocked  at  work.    The   perceptions   of   others   as   shared   by   participants   in   the   present   study,   confirm  how   most   PWS   experience   stigmatization   by   adulthood   (MacKinnon   et   al.,   2007;  Blood  et  al.,  2003).  The  components  of   the   social  process  of   stigma  stated  by  Link  and  Phelan   (2001)   emerge   in   the  experiences  of  participants   in   the  present   study,  including  labelling,  connecting  differences  to  stereotypes,  separation,  status  loss  and  discrimination   (cited   in   Daniels   et   al.,   2007).   People   use   stereotyping   personality  traits  such  as  timid,  quiet  and  anti-­‐social  to  describe  the  participants.  Analogous  to  those   pronounced   in   the   perception   research   are   descriptions   of   PWS   being   shy,  nervous  and  introvert  (Silverman  &  Paynter,  1990;  Bebout  &  Bradford,  1992;  Crowe  &   Walton,   1981;   Ham,   1990;   Kalinowski   et   al.,   1993;   Ruscello   et   al.,   1994).  Expectations   to   be   fluent,   of   parents   or   society   label   participants   in   the   present  study   as   different,   not   normal   or   disabled.   It   becomes   discriminating  when   fluent  speech   is   required   for   professions   as   journalism,   teaching   or   reception  work.   This  view   is   consistent  with   research  of   people  perceiving  PWS  as   unfit   for   professions  like  teaching,  sales,  or  law  (Gabel  et  al.,  2004;  Swartz  et  al.,  2009).  In  line  with  this,  is  the  concern  shared  by  participants  in  the  present  study,  that  stammering  is  seen  as  unqualified  in  ones  occupation,  which  could  result   in  status  loss.  This   is  equally  the  

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worry  of  participants   in  Bricker-­‐Katza  et  al.   (2013)   that  stammering   is  perceived  as  incompetent  or  unprofessional.      Difficult  emotions  and  restricted  participation      Participants   in   the   present   study   describe   different   emotions   and   restricted  participation   besides   more   observable   speech   challenges.   The   domains   in   which  emotions  and  restricted  participation  are  experienced  mainly  relate  to  the  domains  in   which   discussed   misconceptions   and   unfavourable   reactions   took   place.   This  confirms  that  negative  self-­‐perception  and  social  anxiety  leading  to  concealing  their  stammer   or   avoiding   speaking   through   various   strategies   (Crichton-­‐Smith,   2002;  Plexico   et   al.,   2009;   Erickson  &  Block,   2013,   Beilbya   et   al.,   2012;   Klompas  &  Ross,  2004;   Corcoran   &   Stewart,   1998;   Daniels   et   al.,   2012),   probably   due   to   previous  negative  communication  experiences  (O'Brian,  2011;  Beilbya  et  al.,  2012;  Daniels  et  al.,   2012).   Further   this   provides   support   that   the   severity   of   the   impact   of  stammering   differs   from   and   goes   beyond   the   frequency   of   dysfluent   speech  (Erickson  &  Block,  2013)  with  psychological  and  social  consequences  (Iverach  et  al.,  2009;  Tran  et  al.,  2011).    The  most  prominent  emotion  in  the  stories  of  participants  is  fear.  In  education  fear  is  experienced   when   answering   questions,   reading   out   loud   or   presentation.   This   is  consistent  with   the   findings  of  Daniels  et  al.   (2012)  where  participants   report  how  the  same  tasks  induce  anxiety.    Consequently  participants   in  the  present  study  can  reduce  the  frequency  of  talking  or  limit  participation  for  example  by  whispering  the  answer  to  a  peer  or  skip  a  task  or  class.  These  coping  strategies  are  in  line  with  the  approaches  previously  reported  (Klompas  &  Ross,  2004;  O’Brian,  2011;  Daniels  et  al.,  2012)  and  confirm  the  potential  impact  of  stammering  on  school-­‐participation  of  adolescents  who  stammer  (Erickson  &   Block,   2013).   Subsequently   this   can   hinder   academic   achievement   (Klompas   &  Ross,  2004;  Crichton-­‐Smith,  2002;  Daniels  et  al.,  2012);  which  also  takes  place  for  a  participant   in   the   present   study   who   is   not   able   to   do   presentations.   This   affects  clearly  his  grades  in  school.      In   social   life   a   frequently   mentioned   situation   where   participants   in   the   present  study   experience   fear,   is   meeting   a   new   person.   Someone   explains   this   as   not  knowing   what   reaction   to   expect,   as   reported   correspondingly   in   Plexico   et   al.  (2009).    This  can  trigger,  as  multiple  findings  of  the  present  study  demonstrate,  participants  to   restrict   participation   such   as   contributing   less   in   conversations   or   limiting  interactions  with  people   in  general.  This  provides  support   to   literature  stating   that  PWS  can  avoid  words,  people  or  social  situations  (Corcoran  &  Stewart,  1998;  Beilbya  

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et  al.,  2012;  Guitar,  1985;  Blood  et  al.,  2001).  Subsequently,  social  withdrawal  could  be   the   outcome   (Blood   et   al.,   2001),   which   corresponds   with   participants   in   the  present   research,   not   engaging   in   free   time   activities   or   the   stammer   preventing  someone   from   being   outgoing.   Strategies   used   to   appear   more   fluent   can   be  replacing   words   by   synonyms   or   translations   and   for   example   drinking   alcohol   to  relax.   This   is   consistent   with   participants   in   Plexico   et   al.   (2009)   who   can   equally  apply  word  substitution  or  use  a  substance.    In   the   professional   context   the   most   prominent   reporting   is   participants   making  career   choices   based   on   its   limited   demands   for   talking,   like   professions   as   ICT  instead   of   law   or   acting.   Comparable   considerations   were   narrated   in   earlier  research   (Klompas   &   Ross,   2004)   selecting   a   profession   according   to   speech  competence  (Crichton-­‐Smith,  2002;  Klein  &  Hood,  2004).  However  participants  in  the  present  study  also  report  the  opposite.  They  follow  career  aspirations  according  to  their  field  of  interest  without  considering  their  stammer.  Correspondingly,  this  is  also  shared   in   the   research   of   Bricker-­‐Katza   et   al.   (2013)   where   both   alternatives   are  possible.  Job  interviews  are  of  great  concern  to  the  participants  in  the  present  study  due  to  the  discriminative  consequences.  This  confirms  previous  research  stating  that  increased   dysfluency   during   the   interview,   reduces   their   chances   to   be   selected  (Bricker-­‐Katza  et  al.,  2013;  Klein  &  Hood,  2004).  At  work,  the  findings  of  the  present  study  show  ways  to  restrict  talking  which  can  lead  to  hindering  promotion  (Klompas  &  Ross,  2004;  Klein  &  Hood,  2004;  Bricker-­‐Katza  et  al.,  2013;  Crichton-­‐Smith,  2002).    Further,   participants   describe   feeling   embarrassed   if   their   speech   is   dysfluent   and  upset  due  to  the  reaction  of  others,  missed  opportunities  and  challenges  related  to  stammering.   These   feelings   are   repeatedly   shared   by   PWS   in   previous   qualitative  research  (Crichton-­‐Smith,  2002;  Corcoran  &  Stewart,  1998;  Plexico  et  al.,  2004)  and  confirm   that   shame   and   suffering   are   psychological   consequences   of   stammering  (Iverach   et   al.,   2009;   Tran   et   al.,   2011).   Participants   in   the   present   study   also  experience   frustration  and  anger  what  can  affect   the  emotional  and  mental  health  (Bloodstein  et  al.,  2008;  Menzies  et  al.,  1999).  Some  participants  in  the  present  study  who   shared   that   accumulated   feelings   and   experiences   added   or   led   to   suicide  thoughts  can  establish  this.      Challenges  in  the  process  of  acceptance    Besides   feelings,   participants   portray   challenges   with   the   psychological   process   of  accepting   stammering.   Remarkable   are   persons   that   indicate   they   do   not   refer   to  themselves   as   a   person   who   stammers   even   though   participating   in   the   present  research.   It   is  however   important   to  note   that   the  stammer   is  not  denied  and   it   is  acknowledged  in  certain  words  or  at  particular  moments.  This  could  imply  that  these  

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participants   don’t   identify  with   a   stammerer   or   PWS  because   it   labels   their  whole  person   or   whole   speech   by   stammering,   opposite   to   the   reality   they   described.  Moreover   not   identifying   with   these   labels   or   accepting   the   stammer   is   not  surprising   considering   the   increased   negative   connotation   stammering   receives  through   the   discussed   unfavourable   experiences.   In   particular   the   silence   on  stammering  and  misconceptions  on  cause  and  how  to  eradicate  it,  potentially  leads  to  the  blaming  and  punishing  a  PWS  and  can  implies  the  stammer  is  not  acceptable.  Therefor  identifying  with  stigmatised  stammering  or  labels  can  be  separating  (Link  &  Phelan,  2001  cited  in  Daniels  et  al.,  2012)  which  influences  ones  sense  of  belonging  (Daniel   2007).   This   impression   receives   support   from   participants   in   the   present  study,  describing  that  acknowledging  the  stammer  depends  on  the  opinion  of  others  and  where  there  is  more  knowledge  and  understanding  of  the  stammer,  opposite  to  stigma,  enables  acceptance.      Fluctuation  of  the  stammer  frequency      Participants  in  the  present  study  describe  fluctuation  of  ones  stammer  over  time  and  increased  dysfluency  in  particular  contexts.  These  settings  are  mainly  similar  to  the  context  where  unfavourable  reactions  and  experiencing  fear  take  place,  for  example,  in   school   or   in   public   places   where   the   listeners   are   unknown   or   many.   This   is  consistent   with   research   indicating   that   anxiety   plays   a   role   in   stammering  (Bloodstein,  1995;  Miller  &  Watson,  1992).  The  fluctuation  of  dysfluency  is  further  in  line   with   previously   shared   experiences   reporting   that   the   severity   of   speech  dysfluency  can  vary  depending  on  the  setting  and  how  a  person  feels  physically  and  emotionally  (Klompas  &  Ross,  2004).    Support  from  the  environment      Contrasting  with  difficult  and  challenging  experiences  and  feelings,  all  participants  in  the   present   study   could   contribute   on   experiences   of   support   received   from  surrounding   people   and   support   emanating   from  within   the   person.   This   confirms  people   desirably   managing   challenges   related   to   stammering   with   and   without  formal   treatment   (Anderson  &  Felsenfeld,   2003;   Finn,   1996;  Plexico  et   al.,   2005   in  Pexico   et   al.,   2009).   Of   which   the   support   of   the   social   network   can   counter,   as  stated   in   literature,   the   impact   of   undesirable   reactions,   like   teasing   and   bullying,  considerably  (Hearne  et  al.,  2008:  Erickson  &  Block,  2013).    Parents,   siblings,  partners  or   friends  of  participant   in   the  present   study  have  been  described   as   supportive   through   accepting,   encouraging   or   understanding.   This   is  similar   to   previous   research   where   the   close   social   network   provides   support   by  being  open  and  honest,  understanding  and  respectful  (Beilbya  et  al.,  2012;  Plexico  et  al.,  2004).  

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In   the  context  of  Ghana  a  not  dismissible   supportive   factor   is   religion.  Participants  describe   finding   encouragement   and   strength   to   continue   in   ones   faith.   Further,  attending  church  services  weekly  and  participating  in  the  choir  or  Sunday  school  can  offer  a  place  of  acceptance  and  belonging  due  to  the  lack  of  unfavourable  reactions  or  stigmatisation  (Daniel  2007).    Therapy    Only   limited   participants   in   the   present   study   attended   professional   therapy,  describing  both  supportive  and  challenging  experiences  that  are  in  line  with  previous  research  (Klompas  &  Ross,  2004;  Craig,  1998;  Daniels  et  al.,  2006).  Others  describe  the   lack   of   available   therapy   and   desire   for   it.   They   are   not   aware   of   any   of   its  existence   in   Ghana.   Someone   describes   that   managing   stammering   therefore  depends  on  having  the   ‘privilege’   to  get  over   it  over   the  time.  Even,  when  there   is  knowledge  of  available  speech  therapy,  it  is  not  affordable  to  attend.  This  combined  with  the  fact  that  Ghana  only  has  five  speech  therapists,  based  in  the  capital  city  of  Accra   of  which   only   one   of   them   focuses   on   stammering,   demonstrates   the   great  vacuum  of  available  and  affordable  professional  support.      Support  from  personal  intrinsic  features    Portraying   support   from   within   participants   in   the   present   study   describe   how  personality   features   and   talents   can   be   of   great   help   countering   challenges   and  managing  the  stammer.  This  is  equally  reported  before  as  in  perceiving  strengths  in  others   fields  and  experiences  of  persistence  or  success   in   talents  are  supportive  to  transform  the  impact  of  stammering  (Plexico  et  al.,  2004).      In   the   findings   of   the   present   study   different   successful   factors   of   managing  stammering   can   be   recognized   as   found   in   previous   research   as   in   behavioural  modifications,   fluency   modification   techniques,   motivation   and   determination,  environmental   change   and   changes   in   attitude   towards   oneself   and   stammering  (Anderson   &   Felsenfeld,   2003;   Finn,   1996;   Crichton-­‐Smith,   2002).   Participants  actively   search   for   a   context  where   oneself   and   the   environment   are   relaxed   and  comfortable  which  will  enable  to  improve  the  speech  flow,  this  closely  sides  with  the  successful  factor  of  environmental  change  (Anderson  &  Felsenfeld,  2003;  Finn,  1996;  Crichton-­‐Smith,  2002).  In  contrast,  the  speech  of  some  participants  will  be  less  fluent  when  they  are  comfortable.  Participants  in  Crichton-­‐Smith  (2002)  describing  similar  experiences   like   feeling  more   comfortable   stammering   at   home   and   with   friends.  This   could   imply   that   because   the   communication   partners   in   this   context   are  known,   they   do   not   experience   the   fear   in   anticipation   of   the   negative   reaction  (Plexico,  et  al.,  2009;  Beilbya,  et  al.,  2012)  and  therefore  not  feel  the  need  to  apply  effort  to  manage  the  stammer.    

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Participants  in  the  present  study  point  out  the  need  to  work  on  their  stammer  and  apply  various  methods  doing  so.  For  example  taking  time  and  talking  slow  or  paying  attention  to  breathing  techniques  and  practicing  speech.  This  approach,  fluency  and  stammering   modification   techniques,   is   a   successful   factor   of   managing   stammer  (Anderson  &  Felsenfeld,  2003;  Finn,  1996;  Crichton-­‐Smith,  2002).  Another  way  participants  in  the  present  study  work  on  stammering  is  by  challenging  oneself   that   requires   leaving   their   comfort   zone.   This   proves   that   they   obtain   the  successful  factor  motivation  and  determination  (Anderson  &  Felsenfeld,  2003;  Finn,  1996;   Crichton-­‐   Smith,   2002)   and   take   risks,   which   can   bring   down   fear   and  avoidance   (Plexico   et   al.,   2009).   Following,   improving   confidence   has   shown   to   be  supportive   for   participants   in   the   present   study.   This   can   relate   to   participants   in  earlier  research  reporting,   in  a  different  order,   that  speech  therapy   improved  ones  self-­‐confidence  (Klompas  &  Ross,  2004;  Plexico  et  al.,  2004).    Accepting  ones   stammer   is   described  by  participants   in   the  present   study  enabled  them  to  work  on  their  stammer.  This  can  be  confirmed  by  acceptance  stated  to  be  a  feature  of   the  on-­‐going  activity  of   successfully  managing  a  stammer   (Plexico  et  al.,  2004).   A   next   step   is   participants   in   the   present   study   disclosing   ones   stammer,  which   reduces   fear   and   allows  other   persons   to  understand  better.   Participants   in  Plexico   et   al.   (2009)   report   it   brings,   besides   fear,   avoidance   down   as   well.  Furthermore   Bricker-­‐Katz   et   al.   (2013)   state   how   facilitating   the   understanding   of  stammering  is  helpful  to  reduce  misconceptions.  Additionally,  research  revealed  that  PWS   recognizing  ones   stammer  are  perceived  more  positive   than   those  who  don’t  (Collins  and  Blood,  1990  cited  in  Klein  &  Hood,  2004).    Closing   this  discussion,   it   appears   that   challenges  not  only  bring  hardship  but   they  can   also   create   opportunities   to   learn   or  make   hidden   strength   and   talents   shine.  Participants   in   the   present   study   experienced   this   through   improving   over   all  problem-­‐solving  skills,  finding  the  determination  to  become  the  head  of  a  successful  real   estate   company  or   exploring  other   talents   combined  with  motivation   to  work  hard,  becoming  a  promising  graphic  designer.    

4.2  Implications  of  the  results      The  revealed  themes  from  the  experiences  shared  by  participants  in  this  study  entail  various  implications.  These  can  inform  and  be  useful  to  persons  who  stammer,  their  environment,   policy  makers   and  professionals   that  work  with  PWS   such  as   speech  therapists,  psychologists  and  teachers.      The  discussion  shows  how  straining  reactions  and  perceptions  of  people  surrounding  PWS   can   lead   to   stressing   emotions,   restricted   participation   and   increase   the  challenge   on   speech.   Further   the   findings   of   this   research   show   the   existence   of  several  misconceptions  about  stammering  such  as  to  cause,  how  to  deal  with  it  and  

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expectations.   Additionally   there   is   great   unawareness   of   the   impact   of   straining  reactions  on  the  PWS,  the  fluctuating  nature  of  stammering  and  impact  of  endured  emotions  and  restricted  participation.      As  participants  share   they  were   limited   in   talking  about   their   stammer  and  related  challenges   while   growing   up,   it   is   highly   desirable   to   break   this   silence   in   every  context:  at  home,  at  school  or  at  the  work  place.  In  order  to  create  the  open  space  in  which  it  is  possible  to  share  and  discuss  which  reactions  are  unfavourable  and  what  is   supportive.   In   this   open   space   one   can   to   get   to   know   the   complete   person:  he/she   is  much  more   than   the   speech   challenges.   This   can   counter   discriminative  stereotypes.    It   is  further  vital  to  demystify  the  misconceptions  on  cause  and  cures  to  undo  PWS  from   the   responsibility   of   requiring   the   stammer,   which   potentially   leads   to  complaining,   blaming   and   punishing   the   PWS   plus   certain   expectations   on   how   to  manage   it.   Moreover   this   can   make   acceptance   of   the   stammer   less   challenging,  which  can  enhance  managing  it.      Being  aware  of  the  fluctuating  nature  of  stammering  will  prevent  people  interpreting  the  person  to  be  pretending.  Furthermore  it  is  important  to  be  aware  of  this  in  the  professional  context.  People  who  conduct   job-­‐interviews  should  not  generalise   the  potential   dysfluency  during   the   interview   to   every   situation  or   context   in   order   to  provide  equal  chances  to  be  hired.    PWS   in   Ghana   can   make   a   change   by   coming   together   like   in   GSA,   support   each  other,   raise   awareness.   Through   this   they   can   challenge   restricted   participation   in  the  domains  of  in  social  life,  school  and  work  opportunities.  This  way  they  can  tackle  experienced   barriers   to   increase   their   chances   to   participate   and   contribute   to  society  to  reach  their  full  potential.      To   reduce   challenges,   improve   experiences   and   support   PWS,   people   in   the   social  network  can  undertake  various  actions.    Parents  could  support  their  children  for  example  by  not  pressuring  the  child  to  speak  fluent   but   rather   give   the   opportunity   to   talk   freely   and   feel   comfortable   while  talking.   Talking   about   stammering   and   its   related   experiences   can   demonstrate  acceptance   and   support   the   child   in   coping  with   difficult   experiences.   Friends   and  siblings  can  be  of  support  through  accepting  the  PWS,  encourage  and  demonstrate  patience.      Many  of   the   impacting  experiences   take  place   at   school   or   during   the  educational  years.   Therefore,   teachers   could   work   on   preventing   bullying   or   limitations   and  support   actively   and   consciously   the   pupil   who   stammers.   For   instance,   some  experiences  of  students  suggest  that  even  though  it  is  difficult  to  read  out  loud  and  answer  questions  in  class,  being  given  the  opportunity  at  school  is  seen  as  important  

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to   reduce   the   fear   of   speaking   in   public   and   to   be   able   to   demonstrate  understanding  of   taught  subjects.  Hence,  students  should  not  be   forced  but  rather  encouraged   to   feel   comfortable   enough   to   try   and   practice   while   unfavourable  reactions  of  peers  are  prevented.  Further,  a  teacher  with  awareness  of  stammering  could   pass   information   to   parents   to   reduce   misconceptions   and   advice   or   work  together  with  the  parents  to  offer  appropriate  support  to  the  pupils  who  stammers.  The   awareness   of   stammering   could   be   enhanced   during   teachers   training   at  colleges,  universities  or  through  sensitisation  projects  with  schools.      In   the   context   of   Ghana,   the   church   community   and   religion   can   be   significant  supportive   actors.   Participants   report   to   experience   encouragement   through   their  faith.   The   church   community   can   be   a   place   for   PWS   to   feel   comfortable   to  participate  in  social  activities  and  experience  acceptance  and  belonging.    People   from   different   backgrounds   and   professions   attend   church   services,  therefore  this  could  be  a  location  for  PWS  and  GSA  to  organise  sensitisation  projects  in   order   to   enhance   the   awareness   and   provide   correct   information   about  stammering   to   reduce   undesirable   reactions   and   perceptions   that   have   an  unfavourable   impact.   For   example   through   personal   testimonies   combined   with  accurate  information.      The   third   theme   portrays   possible   supportive   factors   within   the   person   who  stammers.  A  person  can  explore  and  develop  intrinsic  strengths  and  talents  in  order  to   counter   impact   of   stammering.   Further   experiences   illustrate   ways   of   how  participants  manage  their  stammer.  These  examples  could  inspire  or  be  considered  to   be   supportive   by   a   PWS.   For   example   searching   how   to   create   a   comfortable  context,  challenging  oneself  or  work  towards  acceptance  and  disclosing.      The   potential   widespread   impact   of   stammering   implies   the   requirement   for  available  and  affordable  professional  support.  Therefore,  there  is  an  urgent  need  for  more  trained  speech  therapists  in  Ghana  and  more  spread  over  the  country  in  order  to  provide  support  to  all  PWS  in  Ghana.  The  awareness  on  stammering  could  be  increased  for  many  other  professionals  like  health   and   social   workers,   psychologists,   amongst   others,   in   order   to   recognize  children   and   adults  who   stammer   and   provide   appropriate   information   or   referral  for  support.  The  professionals  can  also  be  in  the  position  to  interact  with  the  parents  to  inform  them  about  stammering  to  reduce  unfavourable  reactions  and  to  improve  support.  

4.3  Limitations  and  strengths  of  this  study  and  suggestions  for  further  research    A   limitation   of   this   study   is   the   lack   of   an   official   diagnosis   for   the   participants’  

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stammer.  Due   to   limited  number  of   speech   therapists   in  Ghana  and  other   reasons  that   can   still   be   researched   on,   most   PWS   are   not   diagnosed.   Due   to   budget  constraints,   the   research   could   not   seek   official   diagnosis   of   the   participants’  stammer.  However,  during   the   interviews,  dysfluent  speech  was  clearly  observable  for  most   of   the   participants.   For   some,   it   was   less   prominent   but   still   noticeable.  Observations   of   the   researcher   describe   different   characteristics   of   stammering,  such   as   blocking   and   silence   or   repetitions   of  words   and   sounds.   The   participants  describe  the  severity  themselves  which  can  vary  with  time  and  context.      Participants   of   this   study   were   contacted   through   the   Ghana   Stammering  Association  (GSA).  GSA  is  a  young  organization  often  found  by  the  members  through  an  internet  search  on  stammering.  The  personal  initiative  for  this  search  could  imply  that   many   members   are   determined   and   motivated   to   manage   their   stammer  (Anderson  &  Felsenfeld,  2003).  This  motivation  and  determination  could  likewise  be  present  in  educational  attainment,  confirmed  by  most  participants  in  this  study  with  multiple  achievements  in  education.  Individuals  with  more  severe  stammer  or  higher  anxiety   in   several   communicational   settings   that   correlate   with   overall   poorer  educational  accomplishments  or  academic  performance  (O’Brian  et  al,  2011;  Blood  et  al,  2001),  might  not  have  been  able  to  find  their  way  to  GSA  or  are  not  reached  yet   by   GSA   and   therefore   are   not   represented   in   this   study.   Further   older  generations  are  not  yet  connected  with  GSA.    The   background   of   the   researcher   and   most   available   literature   is   different   from  participants’  background.  The  differences  in  background  could  reduce  recognition  by  participants.   It   could   also   have   increased   the   stress   of   the   participant   during   the  interview  concerning  their  speech.  Therefor  the  researcher  worked  closely  together  with  GSA  and  the  local  Speech  therapist  to  adapt  the  research  approach  to  what  was  most   appropriate   to   the   context.   Several  modifications   took   place   based   on   their  feedback.  Additionally  the  research  was  continuously  and  spread  over  a  wide  period  of   time,   one   year,   allowing   thoroughness   and   deeper   insight.   After   the   first  interviews,  feedback  was  asked  on  how  to  approach  and  improve  attitude  during  an  interview.  Extended,  personal  and  detailed  interviews  confirm  how  comfortable  the  participants  were.  Afterwards  copies  of  the  transcribed  interviews  were  sent  back  to  each  participant  allowing  to  add,  remove  or  adapt  any  content,  as  they  preferred.    The  difference  in  background  could  influence  as  well  the  coding  and  analysis  of  the  interviews.  More  steps  of  the  analysis  could  have  been  brought  back  to  participants  for  them  to  revise.  Time  limitation,  response  speed  and  geographical  distance  from  participants   restricted   this.   However,   the   resulting   themes   and   quotes   from   the  interviews  that  supported  each  theme  were  sent  to  all  participants  and  founder  of  GSA   for   feedback.   Eleven   of   the   seventeen   participants   and   the   founder   of   GSA  responded   before   handing   in   this   study   and   confirmed   that   the   themes   represent  

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their  experiences  accurately.  Participants  received  as  well  a  copy  of  the  full  research  report.      Multiple   experiences   shared   in   this   research   are   retrospective   of   adult   describing  memories  while  growing  up.  It  is  possible  that  negative  experiences  are  remembered  more   vividly   (Daniels   et   al.,   2012).   Therefore,   specific   questions   were   asked   for  positive  and  supportive  experiences.      Qualitative  research  has  proven  to  enhance  insight  on  stammering  (Bricker-­‐Katza  et  al,  2013;  Corcoran  &  Stewart,  1998;  Crichton-­‐Smith,  2002;  Klompas  &  Ross,  2004).  This  study  gathered  personal  experiences  situated  in  their  context.  Discussion  of  the  revealed  themes  portrayed  the  complexity  of  stammering  experience  by  discussing  the  connection  and  interaction  of  different  factors.  This  allowed  illustrating  the  P  &  A  Model,  representing  the  multifactorial  nature  of  stammering  (Packman,  2012)  with  individual   experiences.   This   can   broaden   the   understanding   and   insights   of  (theoretical  model  of)  stammering.      The  goal  of  this  study  is  to  explore  experiences  of  PWS  in  Ghana  and  reveal  themes  that   enable   support   for   participants,   PWS   and   their   environment.   Further   the  themes  can  be  applied  as  fields  to  explore  the  specific  experiences  of  a  PWS,  in  order  to   find   adapted,   to   those   experiences,   ways   to   support   a   person   to   counter   or  prevent  impact.    This   research   explores   a   context   that   hasn’t   been   researched   before   on   the  particular   topic   of   stammering,   in   Ghana.   Applying   quantitative   research   would  narrow   the   field   being   explored,   because   options   would   be   limited   through   pre-­‐determined  questions  (Plexico  et  al,  2004).  Therefore  qualitative  interviewing  is  the  most  suitable  to  explore  a  wide  range  of  experiences,  giving  space  to  capture  those  of  which  there   is  no  previous  knowledge  or   literature  available   (Van  Hove  &  Claes,  2011).   In   addition,   qualitative   research   allows   collecting   broad   and   detailed  information   (Van  Hove  &   Claes,   2008)   situated   in   its   context   (Plexico   et   al,   2004).  This   is   in   order   to   generate   hypothesis   rather   than   test   hypothesis   (Van   Hove   &  Claes,  2011).    The   open   research   questions   of   the   interview   explore   three   major   contexts   in   a  person’s   life,   family   and   social   context,   educational   and   professional   context.   This  offers   many   experiences   to   discuss.   An   interview   time   of   one   to   two   hours   can  therefore  be  limited  to  discuss  all  the  experiences  and  in  detail.  Moreover,  a  person  who   stammers   could   need   more   time   to   formulate   their   thoughts   and   talking  continuously  could  be  tiring  (Minichiello  et  al.,  1999  in  Hearne  et  al.,  2008).  On   the  other  hand   these  broad   interviews  give  an  overview  of   common  and  more  

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unique   experiences   related   to   stammering   throughout   the   entire   life.   This   allows  participants  to  assign  what  is  important  to  them  in  this  context.  The  study  does  not  explore  one  context  or  one  factor  in  depth.  However,  it  explores  a   broader   overview   of   several   contexts   and   factors   in   an   attempt   of  mapping   the  field  of  stammering  experiences.  The  phenomenological  approach  states  that  people  who  experience  stammering,  can  offer  broad  descriptions  that  permit  clarifying  the  central  outline  of  the  phenomenon  (Moustakas,  1994  in  Plexico  et  al,  2004).  In  this  way   the   present   research   offers   a   basic   structure,   which   further   research   can  broaden  and  refine  to  continue  mapping  the  field  of  stammering.    There   are   multiple   further   researches   required   in   the   context   of   Ghana   or   West  Africa.   This   study   is   explorative   research   and   has   highlighted   several   important  aspects   of   the   stammering   experience.   Further   research   can   focus   on   each   aspect  explored  and   investigate  broader  and  generate  more  deep   insight  per  aspect.   This  can  be  completed  for  example  for  the  experiences  at  school,  in  social  life,  with  family  and  at  work.  A  more  specific  topic  can  be  career  choices  made  by  PWS  and  how  the  job  search  and  interview  is  experienced  and  influenced.      Furthermore,   the   results   of   present   study   highlight   particular   reactions   and  perceptions   of   the   environment.   Specific   research   on   perceptions   with   different  parties  such  as  teachers,  parents,  health  workers,  employers  etc.,  is  wishful  given  its  potential   wide   impact   and   contribution   to   understanding   the   complexity   of  stammering   experiences.   More   qualitative   research   can   be   conducted   on  experiences   of   PWS   involving   different   age   classes   of   participants,   and   different  backgrounds   of   education   in   order   to   broaden   and   refine   the   continuum   of  reactions,  perceptions,  awareness,  impact  and  supportive  factors.    The   captured   experiences,   broad   potential   impact   and   assumed   high   prevalence  demands   for   quantitative   research   to   define   the   prevalence   of   PWS   in  Ghana   and  other   countries   in   (West)  Africa.   Furthermore,  many  participants  mention  a   family  member  with  a  stammer,  what  could  motivate  the  research  on   inheriting   factor  of  stammering.  If  the  prevalence  of  PWS  is  higher  than  1  %  of  the  population  it  could  be  interesting   to   research   the   causing   factor   like   inheritance,   lack   of   professional  treatment  or  early  support  and  guidance.              

     55    

5.  Conclusion      The  stories  of  participants  in  present  study  offer  a  rich  insight  and  understanding  in  the   complex   nature   of   stammering.   Early   experiences   as   the   lack   of   sharing  difficulties,   being   laughed   at   and   punishment,   attaches   stammering   to   distressing  emotions  such  as  fear  and  sadness.  This  combined  with  experiencing  frustration  and  embarrassment   when   hindered   to   express   oneself.   Subsequently   it   can   instigate  participants   to  escape   these  experiences   through   restricting  participation.  Growing  up,  reactions  and  perceptions  can  become  rooted,  resulting  in  participants  having  to  deal   with   stigmatisation   and   discrimination.   Experiencing   this   sequence   in   certain  contexts  can  influence  the  fluctuating  feature  of  stammering  in  these  settings.    This  process  can  either  be  intensified  or  countered  by  either  unfavourable  reactions  and  subsequent  restricted  participation  or  reactions  of  acceptance,  encouragement  and  understanding.  Further  it  can  be  intensified  or  countered  by  the  own  personality  or   countered   through   developing   talents   or   undertaking   actions   to   deal   with  stammering  (see  figure  2).    The   numerous   experiences   of   participants   demonstrate   different   existing  misconceptions  about  stammering  as  to  cause,  how  to  deal  with  it  and  perceptions.  This  goes  combined  with  pronounced  unawareness  of  the  impact  of  the  reactions  on  the  person  who  stammers,  the  presence  and  impact  of  endured  emotions,  restricted  participation  and  the  fluctuating  nature  of  stammering.        Before,   professional   therapy   support   can   come   from   different   directions.   From  family,  friends  and  teachers  through  talking  about  stammering,  understanding  what  it   is,   avoiding  unfavourable   reactions  and  demonstrating  acceptance  and  patience.  Support   can   also   arise   from   within   the   PWS,   through   personality   and   talents  strengthening  resilience.  Further  different  kinds  of  actions  can  benefit  managing  the  stammer.  Religion  can  offer  encouragement  and  meaning  besides  a  setting  enabling  social   participation   and   sense   of   belonging.   However,   these   potential   supportive  elements  still  appear  to  be  limited,  in  this  context,  when  compared  to  the  described  challenges.      This  implies  there  is  the  need  to  break  the  silence  surrounding  stammering.  PWS  in  Ghana  can  make  a  change  by  coming  together  like  in  GSA,  support  each  other,  raise  awareness.  This  way  they  can  tackle  experienced  barriers  to   increase  their  chances  to  participate  and  contribute  to  society  to  reach  their  full  potential.            

     56    

Figure  2:  Visualisation  of  Conclusion      

Emotions    &  

Restricted  participation  

Managing  of  stammer  

+  Personality  &  

talents      

Straining  and  supportive    Reactions  

 

Speech  Dysfluency  

Genetic    -­‐Neurological  factor  

THEME  1  

THEME  3  

THEME  2  

     57    

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Nederlandse  samenvatting      Inleiding    De  Ghana  Stammering  Association  en  de  enige  van  de  vijf  logopedisten  in  Ghana  die  werkt  rond  stotteren,  werken  samen  om  meer  bewustzijn  te  creëren  rond  stotteren.  Er   is   een   sterk   vermoeden   dat   de   prevalentie   van   personen   met   een  stotterproblematiek   in  Ghana  hoger   is  dan  beschreven   in  de   literatuur   (1%  van  de  populatie)  -­‐  dit  moet  echter  nog  bevestigd  worden  door  onderzoek.  Tot  op  heden  is  er  nog  geen  onderzoek   rond  stotteren  uitgevoerd   in  Ghana  of   in  heel  West  Afrika.    De   beschikbare   literatuur   stelt   dat   stotteren   invloed   heeft   op   de   verschillende  levensgebieden  van  een  persoon  (Bloodstein  et  al.,  2008)  met  beperkende  gevolgen  (Yaruss  &  Quesal,  2004).    Opzet  van  het  onderzoek    Deze  elementen  hebben  er  toe  geleid  om,  samen  met  begeleidende  promotor  en  in  nauwe   samenwerking   met   GSA-­‐oprichter   Elias   Apreku   en   logopediste   Nana   Akua  Owusu,   een   kwalitatief   onderzoek   op   te   zetten,   aanpast   aan   de   context.   Het  onderzoek   kreeg   vorm   rond   volgende  onderzoeksvragen:   ervaringen   van  personen  die   stotteren   (PDS)   en   het   proces   van   stotteren   beter   kunnen   doen   begrijpen;  vaststellen   wat   de   huidige   kennis   is   van   de   participanten   en   hun   omgeving   over  stotteren;  onderzoeken  wat  PDS  als  ondersteunend  ervaren;  het  beleid   informeren  over  de  ondersteuningsnoden  van  PDS.    In  totaal  werden  zeventien  (17)  participanten  in  Accra  en  Kumasi  werden  bevraagd  over  hun  ervaringen  met  familie,  onderwijs,  sociale  context  en  professioneel   leven.  Na  het  uittypen  van  de  interviews  werd  een  thematische  analyse  er  op  toegepast.        Bespreking  van  de  resultaten  aan  de  hand  van  de  literatuur    Misvattingen    De  bevindingen  van  deze  studie  tonen  misvattingen  aan  rond  oorzaak  en  ‘genezen’  van  stotteren,  zowel  bij  de  participanten  als  in  hun  sociaal  netwerk.  Zoals:  de  stotter  die   blijft   ‘plakken’,   wanneer   men   iemand   imiteert.   Of,   consistent   met   eerder  onderzoek,   mensen   die   denken   dat   de   persoon   die   stottert   simuleert,   omdat   de  stotter   niet   constant   is   (Flynn   &   St.   Louis,   2011).   Beide   verklaringen   leggen   de  verantwoordelijkheid  voor  het  ‘krijgen’  van  een  stotter  bij  de  persoon  zelf.    Verder   horen   participanten   mythes   over   hoe   ze   hun   stotter   kunnen   genezen   of  ervan   af   geraken.  Genoemde  misvattingen   kwamen  ook   voor   in   eerder   kwalitatief  onderzoek  en  perceptie-­‐onderzoek  (Hearne,  2008;  Craig  et  al.,  2003;  Hughes  et  al.,  2010;  Langevin,  2009).    

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Een  meer  accurate  opvatting  over  de  oorzaak  van  stotteren  bij  enkele  participanten  in  de  huidige  studie  (PHS)  is  de  opvatting  dat  de  stotter  aangeboren  en/of  erfelijk  is,  omdat   men   een   familielid   heeft   dat   ook   stottert.   Dit   wordt   bevestigd   door   de  vaststellingen   in   genetisch   onderzoek   (Dworzynski,   et   al.,   2007;   Rautakoski   et   al.,  2012).    Ongewenste  reacties  van  de  omgeving    Naast  misvattingen  moeten  PHS  omgaan  met  negatie  en/of  ongewenste  reacties  en  de  impact  daarvan.      Zoals   in   eerder   onderzoek   beschreven,   groeiden   ook   deze   participanten   op   in   een  context   waar   het   beperkt   tot   onmogelijk   is   om   over   stotteren   en   gerelateerde  ervaringen   te   praten   (Blood   et   al.,   2003).   Hierdoor   kunnen   minderjarigen   alleen  staan   met   moeilijke   ervaringen   en   leven   met   de   opvatting   dat   stotteren   niet  aanvaardbaar  is  (Hearne  et  al.,  2008).  Participanten   rapporteren   reacties   van   familieleden   zoals   klagen,   verwijten   en  fysieke   straffen   voor   het   niet   vloeiend   spreken.   Afstraffen   gebeurt   ook   op   school,  waar   leerlingen   frequent  verkeerd  begrepen  worden  als  de   spraak  blokkeert  en   ze  niet   kunnen   antwoorden.   Deze   ervaringen   tonen   duidelijk   aan   hoe   stotteren   de  relatie  met  ouders   (Klompas  &  Ross,  2004)  en  het  dagelijkse   schoolleven   (Blood  &  Blood,  2004;  Davis  et  al.,  2002)  beïnvloedt  door  onbegrip  en  ongeduld   (Erickson  &  Block,  2013).  Het  schoolleven  wordt  verder  beïnvloed  door  het  frequent  uitgelachen  worden  als  men  stottert.  Dit  komt  zowel  voor  in  het  lager  onderwijs  met  groot  risico  op   pesten   (Davis,   et   al.,   2002),   alsook   in   het   middelbaar   onderwijs   waar  adolescenten  die  stotteren  evenzeer  het  doel  van  pesten  kunnen  zijn   (Evans  et  al.,  2008).  Eens  men  volwassen  is,  gebeurt  dit  occasioneel  zoals  voor  de  participanten  in  Klein  en  Hood  (2004).      De   verschillende   percepties   meegedeeld   door   PHS   bevestigen   dat   de   meeste  personen   die   stotteren   stigmatisatie   ervaren   tegen   dat   men   volwassen   is  (MacKinnon  et  al.,  2007;  Blood  et  al.,  2003).  Dit  is  herkenbaar  in  de  stereotyperende  beschrijvingen  van  PHS  zoals  stil,  timide  en  antisociaal,  -­‐  vergelijkbaar  met  verlegen,  nerveus   en   introvert   beschreven   in   perceptie-­‐onderzoek   van   PDS   (Silverman   &  Paynter,   1990;   Ruscello   et   al.,   1994).   De   algemene   verwachtingen   om   vloeiend   te  spreken,  labelen  PHS  als  anders,  niet  normaal  en  invalide.  Dit  wordt  discriminerend  wanneer  vloeiende  spraak  een  voorwaarde  is  voor  een  job  als  journalist,  lesgever  of  receptionist.  Dit  wordt  ook  beschreven  in  onderzoek  dat  PDS  niet  geschikt  ziet  voor  beroepen  zoals  lesgeven,  verkoop  en  advocaat    (Swartz  et  al.,  2009).    Moeilijke  emoties  en  beperkte  participatie    

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Participanten  van  de  huidige  studie  beschrijven  verschillende  gevoelens  en  beperkte  participatie.  Dit  bevestigt  dat  de  ernst  van  de  impact  van  stotteren  verder  gaat  dan  de   frequentie  van  de  stotter   (Erickson  &  Block,  2013)  en  psychologische  en  sociale  gevolgen   heeft   (Iverach   et   al.,   2009;   Tran   et   al.,   2011).   De   domeinen   waar   deze  emoties   en   beperkte   participatie   ervaren   worden,   zijn   grotendeels   dezelfde  domeinen   waar   de   besproken  misvattingen   en   ongewenste   reacties   plaatsvinden.  Wat  bevestigd  wordt  door  onderzoek  dat  stelt  dat  negatieve  zelfperceptie  en  sociale  angst  leiden  tot  het  verbergen  van  de  stotter  en  het  vermijden  van  spreken  aan  de  hand   van   verschillende   strategieën   (Crichton-­‐Smith,   2002;   Erickson  &   Block,   2013,  Beilbya   et   al.,   2012)   door   voorgaande   negatieve   communicatieve   ervaringen  (O'Brian,  2011;  Daniels  et  al.,  2012.      De  meest  naar  voor  komende  emotie  uit  de  verhalen  van  de  participanten  is  angst.    In  het  onderwijs  is  dit  tijdens  het  stellen  en  beantwoorden  van  vragen,  voorlezen  of  presentaties,  gelijkaardig  als  in  Daniels  et  al.  (2012).  Als  gevolg  van  deze  angst  gaan  PHS   het   antwoord   fluisteren   aan   een   buur,   het   voorlezen   of   een   bepaalde   les  skippen.  Deze  strategieën  werden  eerder  gerapporteerd    (O’Brian,  2011;  Daniels  et  al.,   2012)   en   bevestigen   de   impact   van   stotteren   op   schoolparticipatie   bij  adolescenten   (Erickson   &   Block,   2013).   Dit   kan   ook   de   academische   prestaties  hinderen   (Klompas  &  Ross,   2004;   Crichton-­‐Smith,   2002)   zoals   een  PHS   vertelt:   zijn  resultaten  waren  beïnvloed  door  het  niet  kunnen  geven  van  presentaties.      In  het   sociaal   leven  ervaren  participanten   in  de  huidige  studie  angst  wanneer  men  iemand  nieuw  ontmoet.  Omdat  men,  zoals   in  Plexico  et  al.   (2009),  niet  weet  welke  reactie  men  kan  verwachten.  De  bevindingen  in  huidge  studie  demonstreren  dat  dit  participanten   kan   aanzetten   tot   gelimiteerd   participeren   in   bijvoorbeeld  conversaties  of   interacties  met  anderen.  Dit  wordt  bevestigd  door  de   literatuur  die  stelt  dat  PDS  woorden,  personen  en  sociale  situaties  kunnen  vermijden  (Corcoran  &  Stewart,   1998;   Beilbya   et   al.,   2012)  met  mogelijks   sociale   terugtrekking   als   gevolg  (Blood   et   al.,   2001).   Dit   is   herkenbaar   in   PHS   die   niet   deelnemen   aan  vrijetijdsactiviteiten   of   iemand  die   belemmerd  wordt   sociaal   te   zijn.  Om   vlotter   te  spreken   gaat   men   synoniemen   of   vertalingen   gebruiken   of   bijvoorbeeld   alcohol  drinken   om   relaxter   te   zijn,   zoals   participanten   in   Plexico   et   al.   (2009)   die   ook  woordsubstitutie  of  het  gebruik  van  een  middel  toepassen.      In  de  professionele  context   is  een  betekenisvolle  bevinding  dat  PHS  de  keuze  voor  een  beroep  maken  op  basis  van  hoeveel  men  ervoor  moet  praten,  zoals  eerder  voor  ICT   kiezen   dan   voor   advocaat   of   acteur.   In   eerder   onderzoek   beschrijft   men   een  zelfde   keuzeredenering   (Klompas   &   Ross,   2004;   Crichton-­‐Smith,   2002).   Het  tegenovergestelde,  beroepskeuzes  maken  naargelang  de  persoonlijke   interesses  en  talenten,  werd  ook  gerapporteerd  in  voorliggende  studie.  Verder  ervaren  PHS  grote  

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stress  bij  een  jobinterview  uit  angst  voor  de  discriminerende  gevolgen.  Dit  bevestigt  eerder  onderzoek  dat  stelt  dat  stotteren  tijdens  een  interview  of  het  uitvoeren  van  een   job,   de   kansen   doet   afnemen   om   aangenomen   (Klein   &   Hood,   2004)   of  gepromoveerd  (Bricker-­‐Katza  et  al.,  2013)  te  worden.      Verder   ervaren   PHS   schaamte   bij   het   stotteren   en   verdriet   door   ongewenste  reacties,   gemiste   kansen   en   andere  moeilijkheden.  Deze   gevoelens  werden  eerder  gedeeld  door  PDS  (Corcoran  &  Stewart,  1998;  Plexico  et  al.,  2004)  en  bevestigen  dat  schaamte   en   lijden   psychologische   gevolgen   zijn   van   stotteren   (Tran   et   al.,   2011).  Verder   vertellen   PHS  over   frustratie  en  kwaadheid  wat   de   emotionele   en  mentale  gezondheid   kan   beïnvloeden   (Bloodstein   et   al.,   2008;   Menzies   et   al.,   1999).  Sommigen  bevestigen  dit  door  ervaren  zelfmoordgedachten.      Uitdagingen  in  het  aanvaardingsproces    PHS   beschrijven   de   uitdagingen   in   het   psychologische   proces   van   het   stotteren   te  aanvaarden.  Moeilijkheden  met  stigmatisering  en  het  accepteren  van  stotteren  zijn  niet   verwonderlijk,   gezien   de   negatieve   beeldvorming   die   stotteren   krijgt   door   de  besproken   ongewenste   ervaringen.   Meer   specifiek:   stilte   rond   stotteren,  misvattingen   over   oorzaak   en   hoe   elimineren,   die   dan   leiden   tot   het   verwijten   en  straffen   van   PDS,   en   het   beschouwen   van   stotteren   als   onaanvaardbaar.   Hierdoor  kan  het  identificeren  met  gestigmatiseerd  stotteren  of  labels  verwijderend  zijn  (Link  &  Phelan,  2001  cited  in  Daniels  et  al.,  2012)  wat  het  gevoel,  deel  te  zijn  van,  negatief  beïnvloedt   (Daniel   2007).   Dit   wordt   ook   in   voorliggend   onderzoek   door   PHS   die  beschrijven   dat   het   erkennen   en   aanvaarden   van   en   omgaan   met   stotteren  afhankelijk   is   van   de   opvattingen   van   anderen   en   dat   meer   kennis   en   begrip,  aanvaarden   van   stotteren   bevordert.   Het   is   opmerkelijk   dat   er   toch   ook  participanten  zijn  die,  ondanks  hun  deelname  aan  dit  onderzoek,  zichzelf  niet  zien  als  iemand   die   stottert.   Het   is   belangrijk   daarbij   te   vermelden   dat   de   stotter   niet  ontkend  wordt,  en  erkend  wordt  bij  bepaalde  woorden  en  situaties.  Dit  betekent  dat  men  zich  niet  identificeert  met  het  stotteren.  PHS  beschrijven  het  stotteren  als  fluctuerend  doorheen  de  tijd  en  melden  verhoogde  moeilijkheden   met   vloeiend   spreken   in   bepaalde   contexten.   Deze   contexten   zijn  voornamelijk   dezelfde   als   waar   ongewenste   reacties   en   ervaren   angst   beschreven  werden.   Dit   is   consistent   met   onderzoek   dat   stelt   dat   angst   een   rol   speelt   in  stotteren.   De   fluctuerende   vloeiendheid   is   gelijkaardig   aan   eerder   beschreven  ervaringen  waar  de  vloeiendheid  kan  verschillen  afhankelijk  van  de  setting  en  hoe  de  persoon  zich  fysiek  en  emotioneel  voelt  (Klompas  &  Ross,  2004).  Ondersteuning,  therapie  en  intrinsieke  persoonlijkheidskenmerken  Naast   de  moeilijke   ervaringen   kunnen   alle   PHS   ondersteunende   ervaringen   delen,  afkomstig  van  omringende  personen  of  intrinsieke  eigenschappen.  Dit  bevestigt  dat  

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personen  hun  stotter  kunnen  beheersen  met  en  zonder  formele  therapie  (Anderson  &   Felsenfeld,   2003),   waarbij   de   steun   van   het   sociale   netwerk   de   impact   van  ongewenste  reacties,  zoals  pesten,  aanzienlijk  kan  tegengaan  (Hearne  et  al.,  2008).    Familieleden,   vrienden   of   partners   werden   beschreven   als   ondersteunend   door  aanvaarding,   begrip   en   aanmoediging,   wat   gelijkaardig   is   als   beschreven   steun   in  eerder  onderzoek  door  openheid,  eerlijkheid,  begrip  en  respect  (Beilbya  et  al.,  2012).    Hierbij  spelen  in  de  context  van  Ghana,  kerkgemeenschap  en  geloof  een  belangrijke  rol.   Participanten   beschrijven   steun   en   doorzettingsvermogen   te   vinden   in   hun  geloof.   Door   wekelijks   naar   de   kerkgemeenschap   te   gaan,   kan   men   participeren:    koor   of   zondagschool   zijn   plaatsen   van   aanvaarding   en   ‘behoren   tot’,   door   de  afwezigheid  van  negatieve  reacties  of  stigmatisering  (Daniel  2007).    Slechts  een  beperkt  aantal  PHS  volgden  professionele  therapie,  waarbij  men,  zoals  in  lijn  met  eerder  onderzoek,  zowel  moeilijke  als  ondersteunende  ervaringen  beschrijft  (Craig,  1998;  Daniels  et  al.,  2006).  Anderen  beschrijven  het  gebrek  aan  beschikbare  therapie  en  de  wens  ernaar.  Men  is  vaak  niet  op  de  hoogte  van  de  mogelijkheid  tot  therapie  in  Ghana.  Is  men  hiervan  wel  op  de  hoogte,  blijkt  het  onbetaalbaar  te  zijn.  Deze   bevindingen,   samen  met   het   feit   dat   er   slechts   vijf   logopedisten   in   het   land  werkzaam   zijn,   getuigen   van   het   grote   vacuüm   aan   beschikbare   en   betaalbare  professionele  steun.      Intrinsieke   persoonlijkheidskenmerken   tonen   zich   in   ervaringen   hoe   een   sterke  persoonlijkheid  en   talenten  kunnen  helpen  de  moeilijkheden   tegen   te  gaan  en  het  stotteren   te   beheersen.   Dit   werd   eerder   beschreven   in   hoe   sterktes   in   andere  gebieden   en   ervaringen   van   doorzetting   en   succes   met   andere   talenten  ondersteunend  zijn  om  de  impact  van  stotteren  om  te  buigen  (Plexico  et  al.,  2004).    In  de  bevindingen  van  de  huidige  studie,  kunnen  verschillende  succesvolle  factoren  van   het   beheersen   van   stotteren,   herkend   worden,   zoals   gedragsmodificaties,  vloeiendheid,   modificatietechnieken,   motivatie   en   determinatie,   omgevings-­‐verandering   en   attitudeveranderingen   naar   zichzelf   en   de   stotter   (Anderson   &  Felsenfeld,   2003).   PHS   gaan   actief   op   zoek   naar   een   omgeving   waar   men   zich  comfortabel   voelt,   wat   de   spraak   bevordert.   In   tegenstelling   hiermee   spreken  sommige   participanten   minder   vloeiend   wanneer   men   ontspannen   is.   Wat  gelijkaardig  is  aan  eerdere  bevindingen  waar  men  gemakkelijker  stottert  thuis  of  bij  vrienden   (Crichton-­‐Smith,   2002).   Dit   kan   betekenen   dat  men   de   reacties   van   deze  interactiepartners   kan   inschatten,   geen   angst   ervaart   in   anticipatie   van   negatieve  reacties   (Plexico,   et   al.,   2009)   en   daardoor   het   niet   nodig   acht   om   technieken  om  stotteren  te  beheersen  toe  te  passen.  PHS   wijzen   op   de   nood   om   aan   hun   stotter   te   werken   en   passen   daarvoor  

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verschillende   methodes   toe.   Bijvoorbeeld   de   tijd   nemen   om   traag   te   spreken,  aandacht  schenken  aan  hun  ademhaling  en  hun  spraak  oefenen.  Dit  zijn  voorbeelden  van  de  succesvolle  factor  modificatietechnieken  (Anderson  &  Felsenfeld,  2003).      Een  andere  manier  waarmee  PHS  aan  hun  stotter  werken  is  zichzelf  uit  te  dagen  en  hun   comfortzone   te   verlaten.   Dit   getuigt   van   de   succesvolle   factor   ‘motivatie   en  doorzettingsvermogen’   (Anderson  &  Felsenfeld,  2003)  en  de  factor   ‘risico’s  nemen’  die   angst   en   vermijden   kunnen   doen   dalen   (Plexico,   2009).   Vervolgens   is   het  verhogen  van  zelfvertrouwen  ondersteunend  gebleken  voor  PHS.  Dit   ligt   in   lijn  met  participanten  in  eerder  onderzoek  waarbij  logopedie  hun  zelfvertrouwen  verbeterde  (Klompas  &  Ross,  2004).      Stotteren  aanvaarden  wordt  door  PHS  beschreven  als  bevorderlijk  voor  het  werken  eraan.  Dit  wordt  bevestigd  door  onderzoek  waar  gesteld  wordt  dat  aanvaarden  een  kenmerk   is   van   de   continue   activiteit   van   het   succesvol   beheersen   van   de   stotter  (Plexico  et  al.,  2004).    Een   volgende   stap   is   waar   PHS   hun   stotter   openbaar   maken,   wat   de   angst   doet  afnemen   en   waardoor   begrip   bij   de   ander   toeneemt.   In   Plexico   et   al.   (2009)  rapporteerde   men   dat   dit   naast   angst   ook   vermijden   doet   afnemen.   Verder   stelt  literatuur   dat   het   faciliteren   van   het   begrijpen   van   stotteren,   misvattingen   kan  tegengaan   (Bricker-­‐Katz  et  al.,  2013).  Bovendien  ontdekte  onderzoek  dat  personen  die  hun  stotter  erkennen,  positiever  gepercipieerd  worden  dan  zij  die  dat  niet  doen    (Collins  and  Blood,  1990  cited  in  Klein  &  Hood,  2004).    Hieruit   blijkt   dat   uitdagingen   niet   enkel   moeilijkheden   maar   ook   mogelijkheden  brengen  om   te   leren   en   verborgen   sterktes   en   talent   naar   buiten   te   laten   komen.  PHS   ervaren   dit   bijvoorbeeld   door   het   verbeteren   van   hun   algemene  probleemoplossingsvaardigheden,  het  vinden  van  de  doorzetting  om  hoofd  van  een  succesvolle  organisatie  te  worden,  of  door  talenten  te  exploreren  gecombineerd  met  de  motivatie  om  hard  te  werken  en  daardoor  een  veelbelovende  grafisch  ontwerper  te  worden.      Conclusie  en  implicaties    De  verhalen  van  de  participanten  bieden  een  rijk   inzicht   in  de  complexiteit  van  het  stotteren.  Vroegtijdige  ervaringen  zoals  het  gebrek  aan  uitwisseling  over  stotteren,  uitgelachen  en  gestraft  worden,   -­‐   verbinden   stotteren  met  moeilijke  emoties   zoals  angst   en   verdriet.   Daarbovenop   komen   de   gevoelens   van   frustratie   en   schaamte  wanneer   men   zichzelf   niet   kan   uitdrukken.   Als   gevolg   kan   men   hieraan   willen  ontsnappen  door  sociale  participatie  te  beperken.  Deze  gebeurtenissen  in  bepaalde  contexten  kunnen  de  fluctuerende  aard  van  stotteren  beïnvloeden  in  deze  settingen.  Eens   volwassen   kunnen   ingewortelde   reacties   en   percepties,   participanten  

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stigmatiseren   en   discrimineren.   Dit   hele   proces   kan   versterkt   of   tegengegaan  worden  door  respectievelijk  ongewenste  reacties  gevolgd  door  beperkte  participatie,  ofwel  reacties  als  aanvaarding,  ondersteuning  en  begrip.  Hierin  spelen  de  kracht  van  de  eigen  persoonlijkheid  en  het  benutten  van  de  eigen  talenten  ook  een  belangrijke  rol  samen  met  het  actief  omgaan  met  stotteren.    De  diverse  ervaringen  van  participanten  tonen  aan  dat  er  verschillende  misvattingen  bestaan  over  de  oorzaak,  het  omgaan  met  en  de  perceptie  van   stotteren.  Dit  gaat  gepaard  met  een  beduidend  onbewust   zijn   van  de   impact   van  de   reacties   ten  aan  aanzien   van   PDS,   de   aanwezigheid   en   impact   van   moeilijke   emoties,   beperkte  participatie  en  het  fluctueren  van  stotteren.      Voordat  men  professionele  hulp   inschakelt,  kan  ondersteuning  vanuit  verschillende  richtingen   komen.   Bij   familie,   vrienden   en   leerkrachten   kunnen,   door   het   spreken  over  stotteren,  door  het   leren  begrijpen  wat  het   is,  ongewenste  reacties  vermeden  worden,   en   kan   acceptatie   en   geduld   groeien.   Steun   kan   ook   vanuit   de   PDS   zelf  komen  door  het  inzetten  persoonlijkheidskenmerken  en  talenten,  wat  de  veerkracht  kan  versterken.  Verder  kunnen  verschillende  ondernomen  acties  het  beheersen  van  de  stotter  bevorderen,  zoals  bijvoorbeeld  een  comfortabele  context  creëren,  op  de  ademhaling  letten  of  zich  zelf  uitdagen  door  de  comfort  zone  te  verlaten.  Religie  in  het  leven  kan  moed  geven,  een  plaats  bieden  voor  sociale  participatie,  en  de  PDS  de  ervaring   bieden   deel   uit   te   maken   van   een   gemeenschap.   Deze   ondersteunende  mogelijkheden  zijn  echter  nog  beperkt  aanwezig  in  de  context  van  de  participanten  in  huidig  onderzoek,  in  vergelijking  met  de  beschreven  uitdagingen.      Deze  bevindingen  tonen  aan  dat  de  stilte  rond  stotteren  in  Ghana  doorbroken  moet  worden.   PDS   in   Ghana   kunnen   het   verschil   maken   door   samen   te   komen,  bijvoorbeeld   binnen   GSA,   om   elkaar   te   steunen,   bewustzijn   te   vergroten   en  sensibilisering   aan   te   zetten.   Hierdoor   kan   men   barrières   doorbreken   die   PDS  ervaren,  om  zo  hun  kansen  te  vergroten  om  te  participeren  en  bij  te  dragen  aan  de  samenleving  als  mensen  die  iets  te  bieden  hebben.                

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Appendix  

 

     

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Annex  1:  Call  to  participate  in  qualitative  research  around  stammering    Participants  are  invited  to  share  their  experiences  to  help  improve  understanding  of  the  experiences  of  persons  with  a  stammer  in  Ghana    There  has  not  been  any  research  in  Ghana  yet  that  tends  to  give  a  better  understanding  of   the   experiences   of   persons  with   a   stammer.   In   the  whole   of   Africa   there   has   been  only  one  similar  study  in  South  Africa.  This  research  intends  to  interview  persons  with  a  stammer   individually   and   through   focus   groups   about   their   experiences   of   having   a  stammer.  It  will  also  explore  what  it  means  to  have  a  stammer  in  different  stages  of  life  such  as  education,  work,  social  lives  and  any  other  experiences.      I   am  a  Master   Student   in  orthopedagogy   (a  mix  between   social  work   and  psychology)  from  Belgium.  This  research  is  being  carried  out  as  part  of  a  master  qualification  and  is  supervised  by  Dr.  Elisabeth  De  Schauwer,  researcher  at  university  of  Ghent.  As  a  master  student   researcher   I   aim   to   increase   validity   of   the   study   by   closely  working   together  with  Ghana  Stammering  Association  (GSA)  that  is  initiated  and  executed  by  persons  who  have  a  stammer  and  a  speech  Therapist,  specialized  in  this  matter.      What  does  taking  part  involve?    If   you   decide   to   take   part,   you   participate   in   an   individual   interview.   This   would   last  approximately  one  and  a  half  hours  to  two  hours.  During  this  meeting  you  will  be  asked  about  your  experiences  of  stammering.      What  are  the  benefits  of  taking  part?    Although  you  may  not  benefit  personally   from   the   interviews,  by   communicating  your  experiences   of   stammering,   it   is   hoped   that   the   research   may   provide   better  understanding  and   improve  awareness  of   stammering   in  Ghana.  Unfortunately  we  are  unable   to   offer   payment   for   taking   part   but   your   participation   will   be   greatly  appreciated.      How  do  I  take  part?    For  further  information  please  contact  the  researcher,  Marianne  Debrouwere  (master  student):    Email:  mariannedebrouwere@hotmail.com  GSA:    ghstammeringassociation@gmail.com    Ethical  Issues    If  you  decide  to  take  part,  you  can  withdraw  at  any  point,  without  giving  a  reason  and  without  any  disadvantage  to  you.            

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Annex  2:  Informed  consent      Ghent  University  Consent  to  participate  in  qualitative  research  in  the  context  to  acquire  a  Master  degree  in  Educational  Science.    An  exploration  of  the  experiences  of  persons  with  a  stammer.    I   have   read   the   participation   information   sheet   relating   to   the   above   program   of  research   in  which   I   have   been   asked   to   participate   and  have  been   received   a   copy   to  keep.  The  nature  and  purposes  of  the  research  have  been  explained  to  me,  and  I  have  had  the  opportunity  to  discuss  the  details  and  ask  questions  about  this  information.    I  understand  what  is  being  proposed  and  the  procedures  in  which  I  will  be  involved  have  been  explained  to  me.  By  signing  this  form  I  give:  1.    Consent  to  the  digital  audio  recording  2.    Consent  to  the  transcription  of  interview  data  3.   Consent   to   the   inclusion   of   anonymised   interview   material   in   the   thesis   and   any  publications  or  presentations  resulting  from  it.    I  understand  that  my  involvement  in  this  study,  and  particular  data  from  this  research,  will   remain   strictly   confidential.   Only   the   researcher   involved   in   the   study   will   have  access  to  the  raw  data.  It  has  been  explained  to  me  what  will  happen  once  the  research  has  been  completed.    I   hereby   freely   and   fully   consent   to   participate   in   the   study,   which   has   been   fully  explained  to  me.    Having   given   this   consent   I   understand   that   I   have   the   right   to   withdraw   from   the  program  at  any  time  without  disadvantage  to  myself  and  without  being  obliged  to  give  any  reason.    Participant’s  Name    …………………………..…………………………………………….    Participant’s  Signature……………………………………………………………………...    Investigator’s  Name    …MARIANNE  DEBROUWERE………………………………….    Investigator’s  Signature…………………………………………………………………….      Date:  ………………………………….    

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Annex  3:  Questions  for  semi-­‐structured  interviews    

• Introduction  of  researcher  and  the  study    

• Basic  information  Participant  o Name  o Age  o Place  of  birth  o Growing  up  o Education  

 • Could  you  tell  about  the  moment  you  first  realized  you  had  a  stammer?  

 • How  would  you  describe  the  severity  of  your  stammer?    

o Could  the  severity  change?      

• Can  you  tell  about  your  experiences    o During  Pirmary  o During  junior  high  school  o During  senior  high  school  o During  higher  education:  university  or  other  o Teachers  o Peers  

 • How  would  you  describe    

o Your  performance  in  school  o Your  participation  in  the  classroom  o Your  participation  with  peers  beside  the  classroom  o What  role  did  stammering  play?  

 • Can  you  describe  your  experiences  

o After  completing  education  o Selecting  occupational  choice  o During  job  search  

 • Can  you  describe  your  experiences  at  work  

o With  employers  o With  colleagues  o Communication  at  work  o Promotion  

 • How  would  you  describe  your  experiences  with?  

o With  family  and  friends  o In  social  situations,  church?  o Intimate  relations  

 • Could  you  describe  perceptions  of  others  about  speech  challenges,  yourself?  

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• Does  for  you  stammering  play  a  role  in:  o Your  sense  of  self-­‐esteem  or  how  you  value  yourself  o Confidence  in  yourself  o Overall  health  and  physical  well-­‐being  o Your  identity    

• How  do  you  see  your  quality  of  life?    

• What  has/is  supportive  to  you  in  dealing  with  your  stammer  or  what  you  think  can  be  supportive  for  others?    

• Did  you  or  are  you  attending  speech  therapy  and  what  are  your  experiences  with  it?      

• Has  having  a  stammer  had  any  positive  effect  in  your  life?