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Welcome to
Allied Health Telehealth Virtual Education
Rewriting the opening act of a T21 diagnosis:
Merging positive psychology, crisis communication
and a parent perspective with a symbolic suitcase
11th May 2021
Ingerlise Svaleng, M.S. Coaching Psychology, Founder of 21 GIFTS
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Twitter
Follow the A2K Allied Health Educators
AlliedtoKids@AlliedtoKids
Today’s Twitter hashtag
#T21Gifts
For more information contact your AHE
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2
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Rewriting the opening act of a T21 diagnosis
Ingerlise Svaleng, founder of 21 GIFTS and lucky mama
11th May 2021, The Allied Health Telehealth Virtual Education Program
Today
at a glance
My story About 21 Gifts
01 Becoming a mum, the diagnosis
story and inspiration behind 21
Gifts
02 What, why, how, learnings from
health professionals and families,
plus an exciting new project for
ANY diagnosis
Let’s rewrite the How to get involved
03 opening act!
Merging academic research, positive
psychology, crisis communications and
parental insight into a new framework
04 It takes a village. We’d love to
have you in ours – and it’s all
free
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My story
September 2015, Norway
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“A diagnosis delivered in seconds, lives forever in a parent’s memory”
Paying it forward
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[A kindness project to rewrite the opening act of a T21 diagnosis by infusing
hope, inspiration and facts about quality of life into the diagnosis conversation]
“A suitcase for a new adventure”
Aims to balance the medical focus with the celebration
of a new baby and the opportunities (and joy) ahead.
Delivered to new parents by health professionals in
120+ hospitals across Australia and NZ at point of a T21
diagnosis.
270+ suitcases distributed for free the first year.
Ad-hoc collaborations with hospitals in the UK.
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A gift of hope + inspiration
Just the same way every person with DS is unique
with their own personalities, strengths and
resources, so are the gifts in each suitcase a little
bit different.
Overflowing with gifts, hope, joy and a focus on
opportunities.
No medical information.
Welcome-to-the-world brochure/mini-mag
including evidence-based, academic research on
quality of life, family wellbeing and all the things
parents wants to know about this new adventure.
Also includes recommendations of our favourite
communities, inspirational social media accounts
and resources.
Happy family. 79% of families said their outlook
on life was MORE positive because of their child
with T21. Other reported side effects:
Perspective, meaning and joy.
Lucky siblings. 9 out of 10 siblings report being
better people because they have a sibling w/T21.
They also score higher on compassion,
acceptance and patience than the average child,
plus report favorable self-concepts. Sibling
relationships are as good or better than in so
called ‘typical families’.
Good news for love: Married couples with a
child with T21 have lower divorce rates than the
general population!
A rich and meaningful life. 99 percent of people
with T21 reported being happy with their lives.
Abstract – source:
96% liked how they look, and 86% felt they make
American Journal of Medical Genetics, 2011 Oct; 0(10): 2360–2369. friends easily.
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The future is bright. People with DS are rewriting what it
means to live with an extra chromosome. They attend
mainstream school, some take off to university, fall in love,
marry, get meaningful work, order lattes with their friends,
become international models, swim the British Channel,
compete in IronMan races, do TedX talks – or like most of
us, only do some of this.
There’s nothing Down about it. The name is because the
man who identified the syndrome’s surname was Down.
Insight from those ahead There are plenty of reasons why Up Syndrome would be
more appropriate.
on this new adventure Play is therapy, therapy is play. Think of it more like a
and everyday life weekly visit to your kid’s favourite play partner.
The community is real. We’re a bunch of different people,
from different backgrounds with different interests and
ideas about all things life – yet the sense of community is
like nothing else.
It does not define your child or family. Your child is more
alike than different, the perfect version of themselves with
Abstract only:
Full version available in the 21 Gifts welcome-to-the-world brochure the key to a new perspective on life.
What have we learnt?
(A lot)
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8
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21 GIFTS is a tool for us,
and a natural fit with our hospitals’ family care model
Trish, midwife coordinator, health board Wellington, NZ
Your website made me really think about how to celebrate Your initiative is the talk of our hospital – not just because
the new life vs the diagnosis, and every clinician will have a the suitcase is so darn cute but because it’s a visual
different approach. I will initiate training for students to reminder about why we do what we do: To help people.
include the lived experience and research on quality of life. When we just focus on the medical model, we forget the
most important part about the birth of a child - the
celebration. Your suitcase makes this part so easy!
Your mission is inspiring, the idea is innovative and from
a family centred care perspective, absolutely necessary. This little symbolic suitcase could shift
My life, and that of my family, has been enriched for how we approach other diagnosis too.
having and loving my brother. I can't wait for the Have you considered expanding your
opportunity to share a suitcase with a patient's family. project to cover more than T21?
Your experience and vision can teach us healthcare
professionals so much about what reality really looks like, One of my colleagues was surprised to learn of the research in
as we can become numbed by medical facts and focus the booklet showing that children with Down Syndrome have a
too much on the challenges instead of all the good quality of life and improve the lives of their siblings. I think
opportunities and joy. there would be a lot of doctors, medical students, genetic
counsellors, and other health professionals too, who aren’t
abreast of this important research!
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NEW PROJECT:
A booklet of hope for parents of
a child with ANY diagnosis
(…) It’s been a really stressful
week, but receiving the suitcase
from you in the NICU made us
feel less alone... Our lion is
wearing the socks right now.
Reading your story, learning the
good facts, seeing the
community out there, we are so
grateful. Thank you for helping
us feel excited about the future
instead of just all this fear.
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10If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
Videoconference Support Team on 1 300 679 727.
I can’t love this enough! Receiving
this suitcase from our doctor was
such an unexpected and perfectly
timed gift that completely made my
day, especially as my little girl was
having surgery.
Just like the Bondi surf lifeguards,
boom, you were there to help guide
us without me needing to raise my
arm. Thank you for being in service
for new families, such a blessing.
My doctor sat down with your suitcase and looked at the
10 facts about life with DS in your brochure with me. I can’t
It was the best. It made me feel so special, and part of
describe how much it meant. Thank you.
something bigger. I could see the future, not the fear and
the challenges but the real future that we create as a
family. DS doesn’t matter in that future, because it’s not
I hope this can be adopted at all hospitals and for all who my son is. It is just an ingredient in our life.
parents who receive unexpected news about their child.
Thank you so much for the beautiful suitcase. I love it
more than I can explain. Having a baby with T21 can be We were blessed with your gift. It gave
such an emotional cloud in the hospital because it’s only hope, inspiration and made me feel like
a focus on all the risks. But this is an amazing idea to I’m not alone and gave me the right to
brighten up a family like mine’s day. Like a warm hug sent celebrate, when everyone else said sorry.
in a box. It truly made my day.
Hearing your story and seeing the support and amazing I was lucky enough to receive on of your suitcases last year. I
networks out there makes me so happy and excited for can’t thank you enough. It was such a thoughtful and impactful
the future. Thank you for the suitcase as the start of my gift to receive by the doctors who I looked up to for answers.
family’s new journey. Your suitcase gave me what I needed.
I’m 27 weeks pregnant with a baby boy diagnosed with T21. I’m excited and so scared. My
genetic counsellor gave me the beautiful suitcase and it really helps – I look at it every day.
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11If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
Videoconference Support Team on 1 300 679 727.
03
Rewriting the opening act
Merging academic research on quality of life, frameworks from positive psychology, change +
crisis communications and teamwork to make the diagnosis conversation easier and more solution-
focused, for everyone involved.
“A diagnosis delivered in seconds,
lives forever in a parent’s memory”
A flashbulb memory: 21 years later, 80% of mothers remembered the exact words said by the health professionals.
Source: Carr J Child Psychol Psychiatry. 1988 Jul; 29(4):407-31.
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12If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
Videoconference Support Team on 1 300 679 727.
A diagnosis conversation is hard for everyone, including health professionals. There’s no magic fix, no
magic wand that can take away the fear a parent feels staring into the often unknown territory of life with
a disability.
Yet – there are things we can do to make it less of a traumatic experience (for everyone involved).
Together, we can try to reduce the stress and trauma inflicted by the pure medical model of disability that
focuses on challenges and risks – and balance it with information about quality of life and lived examples.
This also includes being aware of the power of words and unconscious bias, and move to a strengths-
based framework that shines light on the future that parents often don’t know how to imagine.
Positive psychology at a glance
In 1998, the President of the American Psychology
Association changed the course of psychology.
For hundreds of years psychology focused on what was
wrong with people, but Martin Seligman decided to focus
on human flourishing and wellbeing.
Defined as “the scientific study of human flourishing and
optimal functioning”. It is the study of the strengths and
virtues that enable individuals, communities and
organisations to thrive.
Not a happiology!
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13If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
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The broaden and build theory
of positive emotions
by Dr Barbara Fredrickson
NEW PROJECT:
Merging the psychology of change, positive
psychology and crisis communications with my
experience as Maia’s mum.
When love and fear collide:
Evidence-based academic research – from
stereotypes/myths to facts.
A health professional’s A new framework for the diagnosis conversation:
Heart, mind and hands.
guide to talk about a Input from hospital partnerships – their experience
and reflections.
child diagnosis Parental perspectives outside of T21, e.g. Mandy &
Kate from Too Peas in a Podcast.
IN PRODUCTION: Sign up by emailing Ingerlise@twentyonegifts.com
for a copy or to provide input to the guide.
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14If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
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HEAD: What you
want parents to
KNOW
HEART: What you
want parents to FEEL
HANDS: What you
want parents to
DO
HEAD: What you
want parents to
KNOW
HEART: What you
want parents to FEEL
What happens in a parent’s brain when
you say “diagnosis” + the power of words
and body language for emotional clues HANDS: What you
“Amygdala attack” and its effect on want parents to
cognitive processing, plus what that means DO
for communications/information
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15If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
Videoconference Support Team on 1 300 679 727.
HEAD: What you
want parents to
KNOW
Power of words: Risk vs. chance
Telling the right information, at the right
time, to the right people, the right way
The whole picture: Including quality of life,
HEART: What you for child and family members
want parents to FEEL
What happens in a parent’s brain when
you say “diagnosis” + the power of words
and body language for emotional clues HANDS: What you
“Amygdala attack” and its effect on want parents to
cognitive processing, plus what that means DO
for communications/information
HEAD: What you
want parents to
KNOW
Power of words: Risk vs. chance
Telling the right information, at the right
time, to the right people, the right way
The whole picture: Including facts and
HEART: What you examples of quality of life, for child and
family members
want parents to FEEL
What happens in a parent’s brain when
you say “diagnosis” + the power of words
and body language for emotional clues HANDS: What you
“Amygdala attack” and its effect on want parents to
cognitive processing, plus what that means DO
for communications/information
Obtain/maintain a growth mindset and
strengths-based approach to disability
Be well – and be doting parents
Have brainpower/energy to do the extra
that is required, from medical f/ups to
NDIS to finding an EI team
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16If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
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Goal: A strengths-based
diagnosis story
→Growth mindset vs trauma
→Love of learning
→Personal transformation
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17If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
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04
How to join the 21 Gifts team
The 21 GIFTS suitcases are free for all health professionals
As we have grown from a small kindness initiative to a movement working with more
than 120 hospitals across Australia and New Zealand, we are also looking for new ways to
work together to spread hope + inspiration at time of diagnosis.
SAY “I DO” AND JOIN OUR COLLABORATIONS OF JOY: Simply let us know how many suitcases you want,
and we’ll ship them to you free of charge. We’re also open for conversations about anything from
practical assistance a la packing events, fundraisers and more.
CHANGE THE NARRATIVE: Want to be more involved? We’d love to talk! From advisory members, 21
GIFTS ambassadors to contributing to the production of our resources… We will roll out the red carpet.
Ingerlise is also available for educational seminars and can tailor sessions to your requirements.
HELP FILL OUR SUITCASES: We are a community funded not for profit, and would love help to keep up
the demand. So if you knit baby blankets or want to help sponsor our suitcases, valued at 100$ each,
contact us at Ingerlise@twentyonegifts.com or our Go fund me campaign here.
Please complete your online evaluation at https://qars.cec.health.nsw.gov.au/Survey?p=CCD7218.
18If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
Videoconference Support Team on 1 300 679 727.
It takes a village to raise a child.
And, it takes a village to break
stereotypes and rewrite the
opening act a child diagnosis.
We’d love to do this together.
E: Ingerlise@twentyonegifts.com
M: 0473 910 828
www.twentyonegifts.com
Watch our story here.
Instagram: @TwentyOneGifts
Facebook: @TwentyOneGiftsBox
*Please email Ingerlise for copies of their brochure,
to receive suitcases, the Too Peas booklet of hope,
or to be notified when the Guide to talk about a
child diagnosis launches.
01
Additional resources
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19If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
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10 tips to talk about unexpected news
Whether diagnosed prenatally or at birth, the way a health professional delivers the news and talks
about T21 sets the tone for the opening act of this child’s life. That means you’ve got a lead role in how
the family remembers and retells this moment. Here are 10 tips, by parents, for how to balance the
medical information with the celebration of a new baby.
1. Create the right environment. Make sure both parents are present – and if there are language barriers, arrange
for a translator. If the mum is sharing a room, move her to a private room to allow for privacy.
2. Say congratulations! A diagnosis doesn’t define a person, so help the parents see this from the beginning by
celebrating their baby – and encourage others to do the same. Avoid saying “sorry”.
3. Words are powerful and shape how we see the world. Instead of saying “We have bad news”, try “We have
unexpected news”. Reframe “risk” with “chance”, and “suffer from” to “living with”.
4. Emotions are contagious. The family will look to you for guidance for how to react to the news. There’s a big
difference between sympathy and empathy; be supportive instead of sad.
5. Everyone’s different. Read the situation and try to meet the family where they are. Do they crave more
information? Or do they just want some time alone with their baby? Either way, do tell them that there has never
been a better time to be born with any disability, that their baby will flourish as the perfect version of
himself/herself, and that life will not be as different as they may think.
6. Find a balance. Positivity isn’t about being a pep-talker, but about balancing medical facts and the shock of a
diagnosis with the opportunities ahead. Help the family see the future that they can’t imagine, by telling them the
latest facts about quality of life for people with DS and their families*.
7. If you don’t predict the medical future for any newborn, don’t predict it for a baby with T21. Focus on the
presence and early years: Explain why you’re doing additional tests, and the kind of early intervention you’ll help
them sign up for, but avoid positioning the list of complications and vulnerabilities that can come with T21 as facts.
Because – we don’t’ tell a parent of a typical newborn about everything that can go wrong in a human life, from
bullying to mental health. The same principle should apply to families whose babies have unique infrastructures.
8. For a prenatal diagnosis, help parents make their own, informed choice by providing non-biased, up-to-date
information about what it means to have T21 in today’s society. Balance the medical information with research on
quality of life, and refer the parents to support communities available through the Down Syndrome Association or
the 321 Pregnancy Care Group on Facebook.
9. Offer resources and connection. Being able to talk to someone who has walked this road before is invaluable. In
the brochure inside the 21 GIFTS suitcase, you’ll find contact details for resources that can connect the parents to
other families like the Down Syndrome Association, T21 mums, 321 Pregnancy Care, and Too Peas in a Podcast.
10. Aim to create a strengths-based diagnosis story, where the baby is talked about as a unique individual whose
future will be as determined by his/her family culture and social upbringing as the extra chromosome; who will
look more like his family than anyone else; who will most likely do everything a typical child does on a different
timeline; who will be loved and who will love fiercely; and importantly, who will write his/her own story in life. Just
like we all do.
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20If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
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Recommended reading
from our American
friends at Jack’s Basket
When Bad News Isn’t Necessarily Bad:
Recognizing Provider Bias When Sharing
Unexpected News
Carissa Carroll, Christopher Carroll, Naomi
Goloff and Michael B. Pitt
PEDIATRICS, Official Journal of The
American Academy of Pediatrics July
2018, 142 (1) e20180503; DOI:
https://doi.org/10.1542/peds.2018-0503
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21If you experience connection problems prior to or during the session, please phone the eHealth 6/05/2021
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Thank you for participating in today’s
Allied Health Telehealth Virtual Education Session.
Please remember to complete your evaluation at
https://qars.cec.health.nsw.gov.au/Survey?p=DF16205.
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