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Domain 7: Socio-cultural, ethical and legal aspects: Socio-Cultural and Ethical Aspects Alison Bowes University of Stirling, Scotland, UK Treviso, 9 February 2012

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Domain 7: Socio-cultural, ethical and legal aspects:

Socio-Cultural and

Ethical Aspects Alison Bowes

University of Stirling, Scotland, UK

Treviso, 9 February 2012

Social , Ethical and Legal Issues

Key ethical questions: •  Does  the  applica-on  challenge  cultural,  religious  or  moral  beliefs?  

•  Does  it  raise  any  new  ethical  ques-ons?  (such  as  new  responsibili-es  for  pa-ents?)  

•  Does  it  increase/decrease  pa-ent  autonomy?  •  Does  it  increase/decrease  access  to  care?  •  Does  it  bring  benefit/harm  to  pa-ents?  

  Key socio-cultural issues • Changes  to  pa-ents’  roles  in  daily  life,  including  work,  family,  social  life.    • Understandings  of  technology  (pa-ents,  rela-ves  and  others)  –  informed  consent?  privacy?  • Changes  in  the  societal  and  poli-cal  context    -­‐  effects  o  the  general  model  of  healthcare  and  access  to  it?  • Changes  in  responsibili-es  of  pa-ents,  rela-ves  and/or  professionals?  • Gender  issues  –  any  implica-ons  or  effects?  Equality  of  access?  

Reporting

NB. Core ethical principles Autonomy – dignity, free will and informed consent

Justice - equity

Beneficence/non-maleficence – benefit and no harm •  All  reports  should  comment  on  adherence  of  the  work  to  these  principles,  and  on  any  issues  that  arose.  

Ethical review

Points to include •  Was ethical review undertaken? If not, why

not? •  What type of committee? (research? clinical?) •  What were the results of the review? •  Did the review request any changes? If so,

what were they? •  Were any particular ethical issues encountered

during the work? How were these resolved?

Checklist of ethical issues

Follows Marziali et al (2005) •  Pa-ent  autonomy  –  informed  consent,  withdrawal,  capacity  

issues,  privacy,  impacts  on  autonomy,  involvement  of  others  •  Access  and  equity  –  equality  impacts,  cogni-ve  capacity  

issues,  upholding  dignity  and  privacy,  any  exclusions  related  to  access  issues  

•  Norma-ve  codes  =  professional  codes  used  and  their  applicability,  any  issues  and  how  resolved  

•  Assessment  of  risk  and  benefit  –  how  assessed,  any  problems.  Feedback,  what  would  happen  if  we  didn’t  do  this?  

• Complexity of these issues: cross country variation but also regional, social class, education, age, gender, ethnicity, locality, • Data • Minimum dataset (but no specific

requirements) • Additional research •  Less systematically recorded material

•  ESSENTIAL – be clear about what data are being used

Reporting socio-cultural issues

•  Changes  in  pa-ent’s  role  in  major  life  areas  –  focus  on  work,  family,  community  life  and  the  difference  (if  any)  the  applica-on  has  made)  

•  Pa-ent’s  rela-ves’  and  others’  understanding  of  the  technology  –  significant  others’  perspec-ves,  any  effects  for  them,  and  how  they  respond  to  the  applica-on  

•  Societal,  poli-cal  context  and  changes  –  impacts  for  the  system  and  society  as  wholes  

•  Changes  in  responsibility  –  how  pa-ents  and  their  supporters  handle  any  new  tasks,  how  professionals  helped  them,  impacts  for  professionals  of  changed  responsibili-es,  any  par-cular  challenges  and  how  addressed  

•  Gender  –  any  gender  impacts?  Was  this  assessed?  Any  other  differen-a-ng  issues?  

(all  have  specific  ques-ons  in  the  guidance)  

Checklist of socio-cultural issues

Tables for reporting – ethical issues

 

•  Start  with  account  of  ethical  review  •  Give  outcomes  •  Any  changes  required/made  •  Use  table  to  report  wider  ethical  issues  as  follows:  

Creating and filling the ethical issues table

Ethical  Issue   How  issue  was  addressed  

Date   Evidence  

Pa-ent  autonomy   Eg  Consent  to  treatment  

Month  1   A  pa-ent  informa-on  pack  was  created,  nurses  were  trained  to  deliver  oral  guidance  with  the  printed  informa-on,  and  pa-ents’  consent  was  recorded  in  wri-ng.  A  two  week  cool-­‐off  period  was  introduced  to  allow  pa-ents  to  withdraw  aVer  considering  the  wriWen  guidance  provided  by  the  nurses.  

Access  and  equity          

Norma-ve  codes      

Assessment  of  risks  and  benefits  

       

Creating and filling the socio-cultural Issues table

Socio-­‐cultural  issue   Key  findings   Evidence  

Changes  in  pa-ents’  roles   Eg  Receiving  their  treatment  at  home  to  a  regular  -metable  enabled  pa-ents  to  stay  in  the  labour  force,  as  they  did  not  need  to  take  -me  off  to  visit  clinics  

Eg  Ques-onnaires  to  200  pa-ents,  interviews  with  20  professionals,  report  from  a  senior  doctor.  70%  of  those  pa-ents  in  work  reported  this  benefit.  (Research  report  available  at  www.renewinghealth.etc)    

Pa-ents’  rela-ves  and  others  

   

Societal  poli-cal  and  context  changes    

   

Changes  in  responsibili-es      

Gender  issues  -­‐  equity          

www.renewinghealth.eu

Thank you

Alison Bowes [email protected]