Mecanismo basado en RLF para el buffer de reproducción

Whilst  disclosing  ED/DD  were  clearly  active  about  addressing  their  needs,  three   themes  identified  their  unmet  needs:    

1. SUPPORT  FOR  COUPLES  

I. Difference  in  feelings  about  disclosure-­‐decision   II. Difference  in  feelings  about  how  to  disclose  

2. SUPPORT  FOR  PARENTS  WHO  RECEIVED  TREATMENT  ABROAD    

THEME  1  -­‐  SUPPORT  FOR  COUPLES  

Two  areas  of  support  were  reported  as  needed  in  relation  to  how  couples   manage  disclosure.    

Difference  in  feelings  about  disclosure-­‐decision    

First,  some  non-­‐disclosing  couples  had  opposing  views  on  disclosure;  in  these   instances  mothers  were  more  inclined  to  tell,  and  fathers  less  so.  This  mother   feels  that  she  and  her  husband  would  have  benefitted  from  talking  about  their   different  feelings:  

Has  been  a  huge  amount  debate  as  you  can  imagine  between  [husband]  and   ourselves  whether  um  we  tell  <Child>  …    I  think  that’s  something  we  could   have  really  done  with  exploring  more  in  conversation…  for  me  I  just  want  to   be  really  honest.  You  <husband>  feel  differently  about  it  don’t  you?  It’s  a  real   bone  of  contention  isn’t  it?  ND/MC/son-­‐3  (UK/ED/I)  

Her  husband  reflects  on  their  clinic  counselling,  and  also  wishes  that  they  had   received  more  support  to  talk  about  their  feelings:      

I  wish  we’d  have  more  support  in  talking  to  somebody  about  all  of  our   feelings…you  know  I  think  we  kind  of  worked  through  it  ourselves  really….   ND/FC/son-­‐3  (UK/ED/I)  

This  mother  and  her  husband  had  planned  never  to  tell  their  children:  

My  husband  and  I  said  we  would  never  tell  them  when  we  first  you  know   conceived  you  know  that  we  would  bring  them  up  as  our  own  and  we   would  never  ever  mention  it.  You  know  and  to  be  fair  we  haven’t....    

ND/MC/twin  sons-­‐7  (UK/ED/I)    

However,  she  is  now  more  open  to  disclosure,  but  her  husband  wants  to   maintain  secrecy.    She  was  distressed  about  this  issue  and  describes  her   feelings:  

I  don’t  think  my  husband  really  wants  to...  I  feel  it  would  break  my  heart  to   tell  them  because  it  would  be  like  saying  you  know  you’re  not  really  ours   and  your  whole  life  has  been  a  lie  (ND/MC/twin  sons-­‐7  (UK/ED/I)    

Overall,  this  illustrates  the  complex  nature  of  decision-­‐making,  and  how  this  is   exemplified  when  couples  have  opposing  views.    

Difference  in  feelings  about  how  to  disclose  

Second,  even  when  couples  fundamentally  agree  that  disclosure  is  best,  and   have  started  the  process,  they  can  hold  different  views  on  how,  and  what  they   would  like  to  tell  their  child.  This  disclosing  mother  would  have  liked  a  

counsellor  to  facilitate  a  conversation  between  herself  and  her  husband  about   their  feelings  on  disclosure,  something  she  considered  would  have  been   especially  valuable  during  the  first  couple  of  years  after  her  son  was  born:  

Sitting  down  with  a  counsellor  and  just  talking  about  our  feelings  ….  just  to   facilitate  the  discussion  amongst  ourselves  so  that  we  could  then  facilitate   discussion  with  <child>.  I  think  that  would  have  been  really,  really  useful..   during  that  first  year  -­‐first  two  years  maybe  yeah.  But  it  just  wasn’t   available.  D/MC/son-­‐8  (UK/ED/A)  

These  examples  demonstrate  a  need  for  on-­‐going  support  to  help  couples  to   manage  changing  feelings  and  emotions  relating  to  disclosure  and  further   supports  the  dynamic  nature  of  disclosure,  even  in  disclosing  couples.    

THEME  2  -­‐  SUPPORT  FOR  PARENTS  WHO  RECEIVED  TREATMENT  ABROAD  

Some  parents  were  worried  about  parents  who  received  their  treatment  abroad   and  did  not  have  the  opportunity  to  attend  counselling,  although  parents  who   actually  received  treatment  abroad  did  not  express  the  same  concerns.  Overall,   this  implies  that  despite  parents  not  finding  counselling  beneficial,  they  still  see   value  in  having  the  opportunity  to  attend  UK  based  sessions:  

Clinics  abroad  don’t  do  implications  counselling  and  I  am  worried,  that   really  worries  me.  Because  I  think  what  if  those  couples  come  back  and  their   pregnant  with  a  baby  and  they  start  having  doubts.  I  mean  it’s  too  late  ...  So  I   think  the  implications  counselling  is  so-­‐so  important  and  it  needs  to  be  done   even  if  couples  go  abroad.  D/MC/son-­‐8  (UK/ED/A)  

You  give  yourself  a  big  responsibility  when  you  do  it,  and  I  would  imagine   that  people  who  go  abroad  and  don't  have  to  have  any,  it  worries  me  that   people  go  abroad  and  don't  have  to  have  any  counselling  for  that  child.   D/MC/son-­‐5  (UK/ED/I)  

However,  many  parents  assumed  that  UK  counselling  was  mandatory  and  were   unaware  that  not  all  clinics  impose  mandatory  counselling,  as  such,  it  is  likely   that  this  concern  would  likely  extend  to  any  parent  who  does  not  receive  pre-­‐ treatment  counselling.    

THEME  3  -­‐HELPING  CHILDREN  TO  UNDERSTAND    

As  discussed,  disclosers  were  aware  that  their  children  do  not  yet  fully  

understand  the  genetic  relevance  of  ED/DD  conception,  however  some  parents   had  specific  worries  about  how  they  will  develop  future  understanding:  

But  the  next  challenge  for  us  will  be  you  know,  having  to  explain  to  him  a   little  bit  more  in  depth,  which  I’ll  be  asking  for  help  for  because  I  don’t,  I’m   not,  sort  of  beyond  me.  D/MC/son-­‐8  (UK/ED/A)  

I  would  actually  LOVE  to  talk  to  a  counsellor  now  actually,  erm  to  just  talk   through  how  I’m  going  to  deal  with  things.  D/SMC/twin  daughters-­‐2   (AB/DD/IA)  

There'll  be  a  lot  of  challenges  ahead  around  all  of  that.  So  I  guess  that  kind   of  counselling  at  different  points  would  help  with  just  sort  of  thinking  

through,  trying  to  get  a  bit  of  clarity  really  around  that.  D/MC/daughter-­‐2   (AB/DD/A)  

These  examples  elucidate  that  parents  would  benefit  from  engaging  with  an   experienced  counsellor  to  decide  how  to  progress  the  disclosure-­‐story  in  the   future.  

Section  summary  and  comparison  with  adopters    

Even  several  years  after  ED/DD  conception,  parents  have  continued  needs   centred  on  the  continuing  sharing  of  information,  and  developing  their  

children’s  understanding.  Couples  experienced  additional  complexities  that  are   not  relevant  in  SMC  families,  who  solely  control  the  sharing  of  information  and   do  not  have  a  partner  who  might  feel  differently.  In  comparison,  coupled   adopters  did  not  report  opposing  views,  perhaps  because  it  is  customary  for   adopters  to  disclose,  so  there  was  less  potential  for  disagreements.  Overall,   adopters  had  fewer  unmet  needs  and  felt  comfortable  that  they  could  find  the   answers  to  these  by  doing  some  research,  in  comparison  to  ED/DD  parents.  

OVERALL  SUMMARY    

Adopters  received  superior  disclosure  support  at  their  adoption  training,   compared  to  ED/DD  parents  pre-­‐treatment.  Consequently,  adopters  had  fewer   needs  and  felt  comfortable  that  they  could  find  the  support  to  meet  them,   whereas  ED/DD  parents  had  a  range  of  existing  needs  and  were  less  certain   how  these  could  be  met.  Overall,  findings  highlight  areas  of  support  that  are   lacking  and  recommendations  for  future  counselling  practice  are  made  in   Chapter  9.