Evolu&on  of  a  pa&ent  educa&on  website    

“CAHPepTalk.com”          

Irene  Mitchelhill  CNC  Dept.  of  Endocrinology,    

Sydney  Children’s  Hospital,  Randwick  

 

Conflict Of Interest Disclaimer Statement

PENS  Conference  2015  

I have received educational support to attend this conference by Pfizer Australia. Pfizer have not had any input into the material within this presentation. I accept full responsibility for the contents of this presentation. The views expressed should not be taken as representative of Pfizer Australia.

Session  objec+ves  

“  A  passionate  idea  leads  to  something  amazing”    

•  Learn  the  process  of  developing  &  facilita+ng  pa+ent  educa+on  using  mul+media  technology  

•  Learn  the  process  of  adap+ng  pa+ent  educa+on  materials  &  resources  to  meet  the  needs  of  families  in  developing  countries  

•  Learn  the  value  of  running  with  an  idea:  “CAHPepTalk.com”    now  has  interna+onal  exposure  

 Follow  your  dreams  &  never  give  up!  

Session  Outline  

•  The  evolu+onary  path  taken    •  The  concern  for  pa+ents  with  CAH  •  The  needs  of  the  CAH  community  •  Moving  from  an  idea  to  reality  

•  Outcomes:  valida+on  of  content  •  Results  •  Moving  with  technology  •  Transla+on    •  The  website  •  The  mobile  App.  

•  Clinician  to  researcher!  

Congenital  Adrenal  Hyperplasia  (CAH)  

CAH  is  an  recessively  inherited  “condi+on”  resul+ng  in:  •  Cor+sol  deficiency  …adrenal  crisis    •  Aldosterone  deficiency  …  electrolyte  imbalance  •  Androgen  excess  …  

•  Ambiguous  genitalia  in  the  newborn  (gender  determina+on)  •  Virilisa+on  &  early  puberty,  short  stature,  infer+lity  

Rare  &  unique  “condi+on”    affec+ng  a  small  number  of  families.      Incidence  1:10,000  -­‐  1:15,000,    high  carrier  status    high  1:50,  1:6000  in  SEA    

CAH: the issues  

•  Significant  physical  &  psychosocial  issues  •  Vulnerable:  child  &  family  

•  Life  threatening,  inherited  condi+on  (Illness,  injury,  procedures  •  Treatment:    life-­‐long,  mul+ple  daily  meds  &regular  follow-­‐up  •  Compliance  essen+al  to  prevent  poor  outcome  •  Sick  day  management:  essen+al    

•  Parents  need  a  good  understanding  of  the  condi+on  &  treatment  &  sick  day  management  procedures.  

 

•  Social  support/  counselling  •  Standard  educa+on:  medical  consult  •  Review:  frequent:  1-­‐2  weekly,    then  3/12  

•  Educa+on:  +ming  is  cri+cal  to  be  effec+ve  •  needs  to  be  ongoing,  limited  resources  •  Informa+on:  simple,  clear,  concise,  consistent  

•  Exper+se:  limited  to  specialist  centres  •  No  formal  educa+on  processes  available.  

Management  Issues  

Impact  of  Chronic  illness  Parental  Adjustment  and  learning…  

– Impact  of  a  sick  child  •  the  diagnosis,    inherited  condi+on,  long  term  care    •  risk  of  adrenal  crisis  &  fear  of  death  

– Grief  process  •  shock,  denial,  anger,  disbelief,  loss,  delayed  a_achment    

– Literacy  •  cogni+on,  comprehension,  culture  &  religion.  

Ini+al  Aims  

Improve  pa+ent  access  to  educa+on  

a)  Develop  a  psychosocial  educa+on  program  (PEP)  for  families  with      Congenital  Adrenal  Hyperplasia  (CAH)  

b)  Develop  the  program  into  an  audio-­‐visual  DVD    •  for  use  as  a  pa+ent  &  family  resource    •  program  able  to  be  facilitated  by  one  health  professional  in  outreach  areas  

A  research  journey  

Mul+-­‐staged  project  Stage  1:    Semi-­‐structured  interviews  Stage  2:    Development  &  valida+on  of  CAHKAQ  Stage  3:  Development  of  the  Psychosocial  Educa+on  Program(PEP)      

Stage  4:    Development  of  the  DVD  Stage  5:  Transcript  transla+on  Stage  6:    “CAHPePTalk.com”  Stage  7:  Emergency  Hydrocor+sone  mobile  App.      

•  The  Planning  &  evalua+on  process  guided  the  idea  

• What  did  we  aim  to  achieve:  (  increased  knowledge  &  coping)  • What    did  the  popula+on  want  • What  I  thought  they  needed  • What  change  in  health-­‐related  behaviours    could  we  measure  •  Evalua+on  process:  what  did  they  think?    

“Beginning  at  the  end”  

•  Solu+on  focused:    •  parent  interviews,  focus  groups,  development  of  CAHKAQ,  

•   “Psychosocial  Educa&on  Program”    •  Development  •  Implementa+on  •  Evalua+on  

“Health  Educa&on:  consciously  constructs  opportuni&es  for  learning  for  individual  target  groups”  

Concept  to  reality  

•  Thema+c  analysis:  “within  &  between”  case  analysis  •  Impact  of  an  inherited  “condi+on”:  

•  Cogni+ve  paralysis,  shock,  grief,  fear,  confusion  •  Overwhelmed  by  medical  interven+ons,    terminology,  staff  reac+ons  •  Frightened,  burden,  responsibility  

•  The  emo+onal  distress:  •  Unable  to  manage  episodes  of  illness  appropriately  •  Cannot  give  emergency  hydrocor+sone  •  Anniversaries-­‐  reminders  

•  Manage  the  “here  and  now”  …hope  for  the  future!  

 Stage  1:  Parent  interviews      

 •       Past:    Devasta+ng  and    emo+onally  trauma+c.  

   •  Present  :  Manageability  easier  with  +me,  in  control  

•  Future:  posi+ve,  hope  for  future,  concern  for  surgery,  fer+lity  

 Parent  interviews  (cont)    

What  do  families  want?  

•  Hope!  there  is  life  ajer  this  and  its  normal    –  Social  support  &  counselling    –  Access  to  support  group:  not  ini+ally,  but  later.    –  See  other  kids  coping  normally  –  Informa+on  at  different  ages  and  stages  

•  Health  professional  issues        –  be  careful  not  paint  a  nega&ve  picture!      –  Help  parents  to  be  alert  ….  but  not  alarmed….  when  illness  occurs  

       Stage  2:  Development  of  the  CAHKAQ    

(CAH  Knowledge  Assessment  Ques;onnaire)    •  Phase  1  -­‐  Construc+ng  test  items    

•  Phase  2  -­‐  Delphi  Technique:    used  to  establish  “content  validity”  

•  Phase  3  -­‐  Pilot  test  CAHKAQ:-­‐    “reliability  &  construct  validity”  

•  Cronbach  alpha  =  0.72      

Ques+ons  with  greatest  error  rate:              incorrect/unsure  Q17  -­‐  If  a  person  is  pale  and  drowsy  …      (44%)  Q21  -­‐  Medical  follow  up  is  generally  recommended…  (44%)  Q19  -­‐  A  person  is  at  risk  of  adrenal  crisis  …    (31%)  Q12  -­‐  Not  taking  hydrocor+sone  causes  …      (31%)  Q2  -­‐  In  CAH  the  body  makes  …        (29%)  Q8  -­‐  Fludrocor+sone  helps  regulate  …      (29%)      

Ques+onnaire  valida+on  

 Preliminary  work  in  this  research  program  informed  the  Psychosocial  Educa+on  Program  (PEP):  +tled  “The  CAH  Family  Workshop”      

•  Overview  of  CAH  •  Adolescent  transi+on  &  adult  issues  •  Psychological  aspects  of  CAH  •  Prac+cal  aspects  of  Sick  Day  Care  •  Hands  on  injec+on  technique  •  Discussion  groups  &  a  personal  story  

 Stage  3:    Development  of  the  PEP  

Results  of  the  PEP  •  4  CAH  Family  Workshops  held  over  2  years  •  140  families  from  3  children’s  hospitals  (mul&ple  par&cipants)    

–  Ethics  &  informed  consent  -­‐  pre  &  post  test  measures  (knowledge,  QOL,  &  filming  for  DVD)  

–  Group  knowledge  was  gained  overall  &  maintained  over  +me  –  Sick  day  management    was  challenging  –  Psychological  evalua+on  was  posi+ve  for  this  clinical  group.  

–  Social  competence/Internalising/externalising(CBCL),  Parental  percep+ons  (CHQ)  –  Process  evalua+on:  88%  +ve:    (content,  useful,  &me)  

 

•  Aim  •  Develop  components  of  the  Psychosocial  Educa+on  Program  (PEP)  into  a  DVD    •  facilitated  by  one  experienced  health  professional    •  for  pa+ents  and  families  living  with  CAH  in  isolated  country  regions.    

–  Improving  access  to  educa+on  resources  is  essen+al.  – Use  of  mul+media  addresses  access  to  informa+on  

•  Visual,  auditory  &  psychomotor  domains  

Stage  4:  Development  of  the  DVD  

Gaining  popularity    •  accessible  • watch,  read,  listen,  review  &  repeat    •  learning  at  own  pace    •  addresses  literacy  issue  pitched  at  correct  level  •  allows  reflec+on  (Krishna,  et  al.  2003)  •  an  interac+ve  component  keeps  interest.  •  Should  not  stand  alone  

Value  of  Mul+media  formats  

Stage  4:  Moving  with  Technology  -­‐  DVD  •  Development  of  the  DVD  

•  Filming  recording  &  edi+ng  PEP  content  •   Key  presenters:    “image  of  trust  &  experience”  •  Transcribed  verba+m  for  verbal  clarity  

– Process    •  Video  edi+ng  of  presenta+ons    •  Total  length  of    DVD  =  1.5  hours  in  20  min  sessions  •  Evalua+on:  4  families  reviewed    final  content  

–  Launched  2011  •  Translated:  Vietnamese  &  Indonesian  

Stage  5:  DVD  transla+on  

•  Approached  by  “Caring  Living  as  Neighbours”  (CLAN)    •  NGO:  improve  health  of  children  with  chronic  illness  in  resource-­‐poor  countries  (Sth  East  Asia:  Vietnam,  Indonesia,  Phillipines,  Pakistan).  

•  Incidence  is  high  (1:6000),  popula+ons  large,  resources  poor.  

•  Limited  access  to  essen+al  medica+ons,  medical  exper+se,  resources.  

• Works  under  a  5  Pillar  structure  to  op+mise:    medica+on,  medical  care,  resources,  family  support,  reduc+on  in  poverty.    

 

   

Demographics  Total&No.&Analysed&

245& Female& Male&& Ave&Age&&Years&

Average&time&to&diagnosis&

Classical&CAH&

Non&Classical&CAH/&Unsure&

Unknown&

Hydrocortisone&&&Florinef/&Hydrocortisone&

only&

Hanoi& 155& 79& 76& 8&(1J19yr)& <1&yr&&(1&@&4yr)&

102& 19/12&&Unknown&=16&

H&Fl&&&&&&&&&=&93&H&&&&&&&&&&&&&&&&=50&Unknown&=&&7&

HCMC& 66& 33& 33& 5&&

(19mthJ15yr)&

<1&yr& 34& 6/14&

&Unknown&=12&

H&Fl&&&&&&&&&=60&

H&&&&&&&&&&&&&&&&=&&6&Unknown&=&3&

Jakarta& 24& 14& 10& 5&(4&mthJ15yr)& <&1&yr& 16& 2/4&&

Unknown&=2&

H&&Fl&&&&&&&&&=&7&H&&&&&&&&&&&&&&&&&=&7&

Unknown&=&0&&

Top$graph$here$is$the$Demographics$of$the$3$centres.$$I$cannot$seem$to$add$the$title$above$&

Transla+on    needed  

•  The  PEP:    a  comprehensive  resource  –  Transcripts  &  slides  translated:  2  medical  professionals  (each  language)  

– translated  word  for  word,  line  by  line.  – both  English  &  Vietnamese  /  Indonesian    (tracking  transla+on)  – Edited  for  cultural  &  lay  understanding  – transcripts  narrated  by  Health  services  interpreter  – IT/film/Web  design:  video-­‐edited  narra+on,  film  &  slides.  

•  Other  resources:  translated    –  CAHKAQ,  evalua+on,  injec+on  instruc+ons,  school  &  healthcare  plans  

Percentage  of  incorrect  answers  !Summary!of!knowledge!deficits:!!!Knowledge!difficulties!

!Percentage!incorrect!or!unsure!>!3rd!tertile!

n=155!Hanoi!%!

n=66!HCMC!%!

n=24!Jakarta!%!

n=187!Australia!

%!Q4! The!chance!CAH!will!recur!in!a!family!is! 44.20! 39.39! 41.66! 17.3!Q9! The!main!reason!for!treating!CAH! 30.20! 40.90! 20.83! 17.7!Q11! In!an!adrenal!crisis!someone!urgently!needs!! 16.10! 30.30! !!!2.94! !!3.8!Q12! Not!taking!Hydrocortisone!causes! 36.24! 54.54! 54.16! 31.7!Q14! If!a!person!misses!a!medication…!they!should! 41.61! 45.45! 70.83! 30.8!Q16! If!a!person!has!slight!cold!….!they!should! 48.99! 34.84! 66.66! 19.8!Q17! If!a!person!is!pale!&!extremely!drowsy…! 54.36! 51.51! 79.16! 31.4!Q18! A!person!with!persistent!diarrhea!&!vomiting! 45.63! 37.88! 29.16! 13.0!Q19! A!person!with!CAH!is!at!risk!of!an!adrenal!crisis! 61.74! 65.15! 37.5! 24.9!Q20! Hydrocortisone!injection!should!be!given!into! 68.45! 71.21! 75.0! 24.3!Q21! Medical!followWup!is!recommended! 61.74! 91.21! 37.5! 38.9!Q22! Main!reason!for!wearing!a!medical!alert! 44.96! 51.51! 37.5! !!!4.9!!!

Stage  6:  CAHPePTalk.com  

•  Mul+  media  in  health:    •  driven  by  pa+ent  need,  advocacy  groups  “immediate  &  ready  access”  to  informa+on.  

•  In  this  era  of  “mul&media  hype”  informa+on  must  be  factual,  validated  &  pitched  for  the  lay  popula+on.  

•  Mul+media  learning  methods:    •  structured,  pa+ent  specific  &  culturally  appropriate    •  appeal  to  all  learners  &  those  with  literacy  or  language  difficul+es.    

•  Internet  access  is  worldwide:  “CAHPepTalk.com”  is  accessible  •  developing  countries  lead  the  way  

22nd June 2014 The Endocrine Nurse's Society of Australasia

Launching  mobile  technology  

Internet  reaches  all!  

No  ma_er  where  !  

Future  of  medicine  

Hydrocor+sone  Mobile  App  

•  Any  pa+ent  with    “Adrenal  Insufficiency”  •  Download  “Pfizer  Meds  App”  via      “Itunes  /Google  play”  •  scan  the  barcode  of  the  vial  of  Hydrocor+sone  or  enter  code  

Emergency  Solu-­‐Cortef  Injec+on  Kit  

Finding  the  “magic  fit”  

•  Finding  the  balance:  Nurse  Clinician  to  Researcher!  –  Priori+sing  full  +me  clinical  work/pursuing  part  +me  research  –  Team  support  and  understanding  

•  Nursing  v/s  Medical    research  –  Qualita+ve  V  quan+ta+ve  analysis  –  significant  psychosocial  &  educa+onal  value  

•  Follow  your  dreams  and  never  give  up!  •  The  value  of  running  with  a  passionate  concept  

Grants    •  ENSA    (  CAHKAQ)                                        $    5,000  •  Sesqui  New  Staff  support    (Thema&c  analysis)      $19,400  •  Nurses  Registra+on  Board    (PEP)      $    5,450  •  SCH  Douglas  &  Lola:  (DVD  development)    $10,000    Website  funding:  •  APEG  Nursing  Professional  Development  Grant  $10,000  

–  Developed  in  honour  of    Jenny  Nairn    (03/01/1959  -­‐16/04/2010)  –  passionate  Endocrine  Nurse    &  a  founding  member  of  ENSA  

Acknowledgments  

CAHKAQ/PEP:  pa+ents  &  families:    SCH,  CHW  &  JHCH  –  ENSA  –  ini+al  research  grant:  5  Gran+ng  bodies  in  total.  –  Jennie  King,  Murray  Fisher:  Faculty  of  Nursing-­‐  Sydney  University.  –  Expert  Endocrinologists,  nurses  &  parents  for  Delphi  &  focus  groups.      – MN  (Hons.)  Supervisors:  Jackie  Crisp  &  Carolyn  Briggs-­‐    University  of  Technology  Sydney.  – Mentor:  Late  Professor  Gabriel  Antony  

DVD  film  &  ediEng:  -­‐  Medical  Illustra+on/Clinical  photography:  University  of  NSW,  Sydney    

Web  design:  -­‐  Nat  Jackson:-­‐  Jacksonspeed.com  

Mobile  App:  -­‐  Dalia  Saad  &  Sonya  Owen:  Pfizer  Australia  

My  family…  Paul,  (Hamish),  Jessie  &  Angus.  

References  (1)  1.   Mitchelhill  et  al  (2014)  Evalua+on  of  Parental  Knowledge  of  CAH  ajer  establishing  CAH  clubs–  Vietnam  &  Indonesia.  APPES  &  

APEG  Joint  Mee&ng  Darwin,  Australia  Oct/Nov:  P03.19.  2.   Mitchell(Mitchelhill)  et  al.  (2013).  Transla+on  of  a  psychosocial  educa+on  program  for  congenital  adrenal  hyperplasia  in  DVD  

format.  Interna&onal  Journal  of  Pediatric  Endocrinology(suppl  1)  133.  3.   Mitchelhill  I,  King  J,    Jackson  N,  Dawes,P  (2012)  Improving  Pa+ent  Access  to  Educa+onal  Resources:  Development  of  an  

Educa+onal  Resource  for  CAH.  APPES  scien&fic  Mee&ng    Nov  14-­‐17  Bali  Indonesia:  P05.25  4.   Mitchelhill  I,  (2010).  Evalua+on  of  a  psychosocial  educa+on  program  for  Congenital  Adrenal  Hyperplasia.  Thesis  -­‐  Master  of  

Nursing  UTS,  Sydney  Australia  5.   King  J,  Mitchelhill  I,  Fisher  M.  (2008).  Development  of  a  congenital  adrenal  hyperplasia  knowledge  assessment  ques+onnaire  

(CAHKAQ).    Journal  of  Clinical  Nursing:  17(13):  1689-­‐1696.  ISBN:  978-­‐0-­‐987497-­‐3-­‐3.      6.   Mitchelhill  I,  King  J,  Fisher  M  (2008)  Effec+veness  of  an  Psychosocial  Educa+on  Program  for  families  with  a  child  with  CAH.  

12th  World  Congress  of  Endocrinology,  Rio  de  Janeiro,  Brazil,  November:Poster.  7.   Mitchelhill  I,  King  J,  Fisher  M  (2007)  Development  of  an  audio-­‐visual  educa+on  program  for  families  with  a  child  with  CAH:  

the  process.  25th  Annual  Australasian  Endocrine  Paediatric  Endocrine  Group  conference,  Broome  WA:  October:  Poster.    8.   Mitchelhill  I,  King  J,  Fisher  M  (2006)  The  lived  experience  of  congenital  adrenal  hyperplasia:  Parent  and  pa+ent  perspec+ve.  

Australasian  Paediatric  Endocrine  Group  Annual  Scien&fic  Mee&ng,  Auckland,  New  Zealand  1-­‐3  December.  9.   Mitchelhill  I,  King  J,  Fisher  M  (2004)  Development  of  a  psychosocial  educa+on  package  for  families  with  congenital  adrenal  

hyperplasia:  Psychosocial  issues.  2nd  Interna&onal  Congress  of  Endocrine  Nursing.  Lisbon,  Portugal.  1-­‐3  September  .  

References  (2)  1.   Tan-­‐Torres  Edeher,  Tessa.  (  2000).Dissemina+ng  health  informa+on  in  developing  countries:  the  role  of  the  internet.  BMJ  

321  (7264):797-­‐800  2.   Soto  Mas  F  G,  (2003)  Health  Educa+on  &  Mul+media  Learning:  Educa+onal  Psychology  &  Health  Behaviour  Theory  Part  1.  

Health  Promo&on  Prac&ce  (4)  3:  288-­‐292.    3.   Soto  Mas  F  G,  Plass,  J  et  al.  (2003).  Health  Educa+on  &  Mul+media  Learning:  Educa+onal  Psychology  &  Health  Behaviour  

Theory  Part  2.  Health  Promo&on  Prac&ce  (4)  4:  464-­‐469.  4.   Wiljer,  D,  Ca]on,  P  (2003  Mul+media  formats  for  pa+ent  educa+on  &  health  Communica+on:  does  user  preference  ma_er.  

J.Med  Internet  Res.  5  (2):e19.  5.   Harrison,  JPaAL  (2006)    The  role  of  E-­‐Health  in  the  changing  Health  Care  Environment.  Nursing  Economics  24  (6):  283-­‐289.  6.   Safeer,  R,  Keenan  J.  (2005).  Health  Literacy:  the  gap  between  physicians  &  pa+ents.  American  Family  Physician.  72  (#0:  

463-­‐468.  7.   Friedman  AJ,  et  al  (2001)  Effec+ve  teaching  strategies  and  methods  of  delivery  for  pa+ent  educa+on:  a  systemic  review  and  

prac+ce  guideline  recommenda+ons.  J  Cancer  Educ.  26  (1)  12-­‐21.  8.   Knowles,  M.S.  (1984)  Andragogy:  an  emerging  technology  for  adult  learning.    Jossey-­‐Bass,  SF.    9.   Raleigh  EH,  Odtohan  BC  (1987).  The  effect    of  cardiac  teaching  programme  on  pa+ent  rehabilita+on.  Heart  &  Lung:  16  (3)  

311-­‐317.  10.   Zernicke,  W.,  Henderson,  A.  (1998).  Evalua+ng  the  effec+veness  of  two  teaching  strategies  for  pa+ents  diagnosed  with  

Hypertension.  Journal  of  Clinical  Nursing  (7):  37-­‐44.