Marlène Beijlevelt, MSc, RN

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Glenn Pierce, MD, PhDKate Khair, PhD, RNMarlène Beijlevelt, MSc, RNRicha Mohan, MA, M.PhilEdward Kuebler, MSW, LLCFlora Peyvandi, MD, PhDMonday, 4 May 2020

SPEAKERS & PANELISTSGlenn Pierce,MD, PhDEdward Kuebler,MSW, LLCRicha Mohan,MA. M.Phil.Kate Khair,PhD, RNMarlène Beijlevelt,MSc, RNFlora Peyvandi,MD, PhD

AGENDA Managing Haemophilia and COVID-19 in Daily LifeMarlène Beijlevelt, MSc, RN, Kate Khair, PhD, RN Dealing with Anxiety and Fear in COVID-19 Pandemic WorldRicha Mohan, MA, M.Phil. Isolation: Being Alone but Not by Yourself: NavigatingThrough Feelings of Isolation and Social DistancingEdward Kuebler, MSW, LLC Questions and Answers PeriodChair, speakers and Flora Peyvandi, MD, PhD3

WFH COVID-19 STATEMENTS-Practical recommendationsSpecific risks of COVID-19Humanitarian aid newsCompany statementshttps://www.wfh.org/en/home4

ASKING A QUESTIONIf you have not sent your question to [email protected], you canask a question in the Question & Answers section.We will address as many questions as time allows.

WEBINAR RECORDINGThe recording of the webinar will be available on theWFH eLearning Platform on Tuesday, May 5th, 2020https://elearning.wfh.org/

COVID-19 & Bleeding Disorders Are PWH at increased risk of having COVID-19? No. Risk factors for severity of disease Can COVID-19 be transmitted through plasma products? Thought to be highly unlikely, being closely monitored Does COVID-19 treatment protocol require special carefor people with bleeding disorders? Yes. Management of coagulation deficiency is complex duringsevere COVID-19

WFH VIRTUAL SUMMITCOVID-19 session onFriday, June 19, 9:00-10:00 EDT

M A N A G I N G H A E M O P H I L I A A N D C O V I D I N D A I LY L I F EK a t e K h a i r, P h D , R NHaemnet, London Chair WFH Nurses CommitteeMarlène Beijlevelt, MSc, RNUMC, Amsterdam WFH Nurses Committee

Where is my haemophilia team? How to contact my centre How to manage my (my child’s) bleeding disorder

How to keep in touch with my centre Digital vs Face to Face reviews Your haemophilia team are still around May not be in Haemophilia centre Working from other areas of hospital or home Expertise is still there Might get ‘virtual’ assessment

What do I do about bleeding? Bleeds in you or your children Your haemophilia team are still around You are able to come for treatment Might be somewhere else in hospital than the centre Might be organized at a different hospital Alternative for clotting administration eg DDAVP and/or Tranexamic acid Extra precautions will be taken NO ‘drop in clinics’ – only come at time when you are told to come If you are admitted We will screen you for COVID Infection Max 1 visitor in hospital

Accessing my centre and treatment How to contact my centre How to manage my (my child’s) bleeding disorder What about surgery

Surgery in COVID-19 time Surgery Your haemophilia team are still around Planned surgery will be postponed till after pandemic Treatment plan is available Acute surgery are always performed Hospital admission according treatment plan Extra precautions Detect or exclude COVID Infection Max 1 visitor in hospital Follow up may be different to ‘usual’

Accessing my centre and treatment How to contact my centre How to manage my (my child’s) bleeding disorder What about surgery? How to manage stocks

Accessing treatment How to contact my centre How to manage my (my child’s) bleeding disorder What about surgery? How to manage stocks How can I manage pain?

Pain management Be aware that some drugs MIGHT impact on COVID 19 outcomes Avoid non-steroidal anti-inflammatory drugs Discuss drug therapy use with your hemophilia team Use alternatives: Analgesia PRICE

Managing normality in my life today What exercise can we do? Obey rules in your area about going outside – think about social distancing Use social media sites for exercise advice – your physiotherapist will help you for hemophilia specific advice How to manage my family if I am sick? Ask for help Think about who might help you today, who you wouldn’t normally ask Careful with Social Media-Limit your accessDon’t watch/listen to everything - Trust your instincts – if it sounds too good to be true it probably is (and vice versa) How should I plan to get back to normal? Take it one day at a time Celebrate the good things

DEALING WITH ANXIETY AND FEAR IN COVID 19PA N D E M I C W O R L DI S O L AT I O N : B E I N G A L O N E B U T N O T B Y Y O U R S E L F :N AV I G AT I N G T H R O U G H F E E L I N G S O F I S O L AT I O N A N DS O C I A L D I S TA N C I N GRicha Mohan, Clinical PsychologistEmpowering Minds, IndiaE d w a r d K u e b l e r, M S W, L L CEKuebler Consulting, USA

Psychosocial issues our bleedingdisorder community is facing Dealing with Anxiety and Fear during COVID 19 Pandemic World Stressors of Increased Anxiety Increased Fear Domains of Triggers Isolation: Being Alone but Not by Yourself: Navigating Through Feelings ofIsolation and Social Distancing Define Isolation Isolation VS Social Distancing Managing our feelings stimulated by fear and hopelessness Defining a New Normal – For now and going forward

Dealing with Anxiety and Fear DuringCOVID 19 Pandemic WORLDRicha Mohan, Clinical PsychologistEmpowering Minds, India4-05-2020

COVID NITYIGNORANCE

Normal fear responseDANGER

Anxiety ANXIETY is a very similar feeling which leads to arousal in the brain and at thesame time in the body, different from fear in a specific way. Anxiety has nothing to do with a harm, but a overreaction to the consequences ofan event and in this case COVID 19 Pandemic rather than the event itself.

Domains of triggers PUBLIC – Disapproval, Isolation, defeat Private – Abandonment, Discomfort, Disability/Illness, Death Based on Beck, Amery & Greenberg, 1985

UNHEALTHY EMOTIONS DepressedUnhealthy angerAnxietyGuiltShameHurtHopelessUnhealthy JealousyUnhealthy envyHEALTHY EMOTIONS Sad but not depressedHealthy angerConcerned and not anxiousResponsible and not guiltyDisappointed with self but not ashamedDisappointed at others, but not hurtRealistically optimisticHealthy jealousyHealthy envy

Concern CONCERN can replace Fear and anxiety when there is no immediatethreat Concern – is a healthy and negative emotion whereas anxiety isunhealthy and dysfunctional emotion. Concern can replace fear when there is no immediate threat, andthey can limit their hypervigilance time when there are high risk forinstance they are going out to the hospitals, or infusions, buygroceries, receiving couriers of AHF etc

PRODUCTIVE WORRYUNPRODUCTIVE WORRYFocused on immediate realistic problemsFocused on distant abstract problemsFeels in controlFeels out of controlWillingness to experiment with solutions andcoping strategiesUnwillingness to try any coping that has noguarantee, there is an absolute demand forcertainty.Willingness to put up with risk and uncertaintyUnwillingness to put up with any risk anduncertaintyHigh level of efficacy in copingFeels helpless and unable to copeLower anxietyHigher anxietyFocus on preventing or reducing harmFocus on a chain of consequencesFocus on problem solving and building resourcesRuminationLesser physiological disturbanceHigher physiological arousal and disturbance

Effective ways of dealing with theCOVID-19 situation Get realistic estimation of your personal coping resources. Organise immediate surroundings example organising your works station at home,charger, reading books, cupboards, drawers etc this will induce a sense ofaccomplishment. Include activities that can give immediate results that one looks forward too, forinstance gardening, learning a new activity, increasing proficiency in a language, thisgives a sense of control. Talk to your friends and relatives over phone, with whom you didn’t got the time tospeak for quite q period of time, this gives sense of belongingness andconnectedness

Effective ways of dealing with theCOVID-19 situation Some time people have other faulty appraisal such as their personal vulnerability, fore.eg older people can have greater vulnerability to the virus and could be worse forthem. Sometimes people do not have higher vulnerability, but they may start assuming thatthey are highly vulnerable to the virus or any kind of the outcome that the Pandemic cangive. Such faulty appraisal can also be corrected which gives them the realistic picture of howvulnerable they are.

Effective ways of dealing with theCOVID-19 situation Have a realistic estimation of the risk this will help one to be CONCERNEDand not ANXIOUS Some people have underestimation of efficacy of simple techniques likewashing hands, social distancing, these faulty reference and appraisalsneeds to be identified and corrected. Identify and write down your emotional and practical buffers and spendsometime to built some of these resources. Identify and write down the functional and dysfunction behavior egRumination is also a dysfunctional behaviors which should be stopped.

Effective ways of dealing with theCOVID-19 situation Information and Social Media Limit your sources from where people get the information from. As there isinformation overload about the COVID 19 Pandemic. Limit the time spend on the social media like researching, forwarding and readingthe information. This is important, as there is a lot of conflicting informationavailable, which gives lot of uncertainty. This can give triggers about anxiety if they have conflicting information or toomuch of information. Make a routine/plan of daily activities and follow it rigorously.

“Its not stress that kills us, it is our reaction to it.”-Hans Selye

Isolation: Being Alone but Not byYourself: Navigating Through Feelingsof Isolation and Social DistancingEdward Kuebler, MSW, LLC

What is isolation Isolation: the state of being in a place or situation that is separate from others : the condition of being separated from other people, towns, countries, etc. on lish/isolation

Social distancing the practice of maintaining a greater than usual physical distancefrom other people or of avoiding direct contact with people or objectsin public places during the outbreak of a contagious disease in orderto minimize exposure and reduce the transmission of infection 20distancing

This SocialDistancingcan also beisolatingwith nowillingnessto engage!

Social distancing with engagement:makes all the difference!

Add A Maskand Its AllGood!OK You getwhere I amgoing withthis!

What To Do WithFeelings of Isolation,Fear, Loneliness?

Isolation can remind us of FEAR OF BEING ALONEFEAR OF LOSING OURSUPPORTMEMORY FROMCHILDHOOD WHEN WEWERE ALONE ANDSCAREDWE CAN BECOME STUCKIN FEAR WHICH CANCREATE LONELINESSAND MORE ISOLATION!

Navigating throughall this . Finding a new perspective: Remembering we have the skills,this is not our 1st time goingthrough something big! Seeing beyond what is in front ofus Changing your outlook . Take a step back .or two .

When we look at thebigger picture, itopens up: more to see! more opportunities! a differentperspective?

Creating a newreality andnormal Changing behaviors- dosomething different! Imagination Resilience Letting go of what you knowto what is now! Creates movement Creates possibility Creates connection

Create a new chapterin your life today! All while: Being SAFE – wear a mask, wash your hands (often) Keeping SOCIAL DISTANCING Stay INFORMED PROTECT those around you Write the next chapter of your life: Physically Emotionally Mentally Spiritually Add color and details Now .Live the next Chapter of your life!Once Upon atime there wasa very brave,strong,Independent,smart, safe,informedperson livingtheir BESTlife .This is a very powerfulstory about someone whocreated and lived anamazing life!And theylivedHappilyEver After!!

THANK YOU

WITH SPECIAL THANKS TO

QUESTION & ANSWERPERIODG l e n n P i e r c e , M D , P h D , K a t e K h a i r, P h D , R N ,Marlène Beijlevelt, MSC, RN, Richa Mohan, MA.M . P h i l . , E d w a r d K u e b l e r, M S W, L L C , F l o r aPeyvandi, MD, PhD

QUESTIONS I am very worried about the situation, what can Ido to worry less? RM How can I overcome the mental stress fromCOVID-19 that results in skipping doses? EK

QUESTIONS How can I manage my fear and concern about mychild/children? RM MY child vs the population as a whole Do you have advice to help parents manage the different,scary news about covid-19? How can I deal withunknowns? Many reports are coming out about Kawasaki syndrome FP, GP Should I change my child’s treatment (increase infusionfrequency?) KK, MB, EK

QUESTIONS I am getting restless at home, what can I do? RM, KK Are there psychosocial risks associated to the endof self-isolation/confinement? EK

STAY SAFETHANK [email protected]