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

Transcription

1 Evolu&on of a pa&ent educa&on website CAHPepTalk.com Irene Mitchelhill CNC Dept. of Endocrinology, Sydney Children s Hospital, Randwick

2 Conflict Of Interest Disclaimer Statement 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. PENS Conference 2015

3 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!

4 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!

5 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

6 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.

7 Management Issues 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.

8 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.

9 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

10 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.

11 Beginning at the end 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?

12 Concept to reality 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

13 Stage 1: Parent interviews 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!

14 Parent interviews (cont) 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

15 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

16 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

17 Ques+onnaire valida+on 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%)

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19 Stage 3: Development of the PEP 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

20 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)

21 Stage 4: Development of the DVD 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

22 Value of Mul+media formats 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

23 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

24 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.

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26 Demographics Total&No.& Analysed& 245& Female& Male&& Ave&Age&& Years& Average& time&to& diagnosis& Hanoi& 155& 79& 76& 8&(1J19 yr )& <1&yr&& HCMC& 66& 33& 33& 5&& (19 mth J15 yr )& Classical& CAH& Non&Classical& CAH/& Unsure& Unknown& 102& 19/12& & <1&yr& 34& 6/14& & Jakarta& 24& 14& 10& 5&(4& mth J15 yr )& <&1&yr& 16& 2/4& & & Top$graph$here$is$the$Demographics$of$the$3$centres.$$I$cannot$seem$to$add$the$title$above$ & Unknown&=16& Unknown&=12& Unknown&=2& Hydrocortisone&&& Florinef/& Hydrocortisone& only& H&Fl&&&&&&&&&=&93& H&&&&&&&&&&&&&&&&=50& Unknown&=&&7& H&Fl&&&&&&&&&=60& H&&&&&&&&&&&&&&&&=&&6& Unknown&=&3& H&&Fl&&&&&&&&&=&7& H&&&&&&&&&&&&&&&&&=&7& Unknown&=&0&

27 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

28 Percentage of incorrect answers! Summary!of!knowledge!deficits:!!! Knowledge! difficulties!! Percentage!incorrect!or!unsure!>!3 rd!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!!!

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30 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

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36 22nd June 2014 The Endocrine Nurse's Society of Australasia

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38 Launching mobile technology

39 Internet reaches all!

40 No ma_er where!

41 Future of medicine

42 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

43 Emergency Solu- Cortef Injec+on Kit

44 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

45 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/ /04/2010) passionate Endocrine Nurse & a founding member of ENSA

46 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.

47 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: P 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) 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 Bali Indonesia: P 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): ISBN: Mitchelhill I, King J, Fisher M (2008) Effec+veness of an Psychosocial Educa+on Program for families with a child with CAH. 12 th 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. 25 th 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. 2 nd Interna&onal Congress of Endocrine Nursing. Lisbon, Portugal. 1-3 September.

48 References (2) 1. Tan- Torres Edeher, Tessa. ( 2000).Dissemina+ng health informa+on in developing countries: the role of the internet. BMJ 321 (7264): 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: 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: 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):e Harrison, JPaAL (2006) The role of E- Health in the changing Health Care Environment. Nursing Economics 24 (6): Safeer, R, Keenan J. (2005). Health Literacy: the gap between physicians & pa+ents. American Family Physician. 72 (#0: 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) 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) 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):