How to explain to the parents about Down Syndrome?
First, you will need to know what is the problem and understand before
explaining to them.
The parents will be worried, anxious and some might even cry upon receiving
the news. Be ready to comfort them and help them through this journey of
hardship but understanding their children together.
As a doctor, you are to tell them the truth and at the same time, comfort and
reassurance.
So.. how should you start your conversation?
1: Express your concern
- Greet the parents, introduce who you are and why are you here.
Setting
- Before telling them about their child's condition,
ask if they need someone to accompany them or
if their family member is here (if they are alone).
Example: Before we go ahead, can I just ask, would you like to be with
someone now?
Perception
- Ask what they realise that is abnormal about their child.
- This helps us to understand how much
they know about the situation, so we know where to start.
Invitation
Tell them about the news:
Example: Unfortunately, I do not have good news, I am sorry to tell you
that... ...
*wait for them to react before you continue your explanation*
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2. Explain and educate
Knowledge
- Explain the nature of down syndrome. definition, symptoms and signs
- Genetic Issue
- Intellectual Aspect
- Health Aspect
- To tell them their child would probably need
a lot of follow up on potential health issues
- TO explain the prognosis is poor
- average lifespan is around 50-60years old,
-possible health issues of the heart, gastrointestinal,
eyes and bones,
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3. Advice the parents
- Their character and behaviour infront of the child
- try to be encouraging to the child
- be patient and kind
-To discover the child's talent
- the child might not do well in studying but might excel
in cooking, music or sports
- Diet
- to ensure good nutrition provided and not neglect the
child
- they need the same/ more attention compare to normal
children of the same age.
- Advice to look for special care school
- there are special school's which teaches kids who have the
same problem
- opportunity to know other parents who face the same issue
and share experiences
👇
4. Future follow up
- to come regularly for normal vaccination
- to check calcium development regularly
- ensure proper growth and reach their age milestone
- Series of check up for their child in the future : Eye checkup, bone
density, X-ray, echocardiogram, etc.
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5. Encourage the parents to join a parents group
Summary
- we can give them leaflets (if available) to understand down's syndrome
better
- provide reliable sources (websites) so they can read to help with the
understanding
- encourage them to not give up and keep persevering till the end. the child
is a gift from god, and we are to take care of them with love and care.
Example: Don't blame yourself. There is nothing that could have been done
to stop this from happening. What you need to do now is to... ...
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-Reassurance
Example:
- I understand you are worried
but...
- Do you need some time to rest?
- We will keep an eye on your child for his (results), so we can
provide the treatment earlier.
- The doctor/professor who is in charge of your child is an expert on
this syndrome and would try
his/her
best to help your child.
- I will give you a follow up date with us in the
clinic, will you be available on the ... ...?
👇
6. Empathy (throughout the whole session)
** Always ask if they understand what you are trying to say before going to
the next point.
**ask if they have questions to ask you concerning their child and their
worries.
Example: Do you understand what I am trying to explain?
Do you have any questions?
- Look them in the eye while you are talking and show that you care about
them.
- If there is a break down (crying), pause the conversation and try to offer
tissue or suggest them to come at a later date with their family/support.
- Have empathy and to try answer their questions at the same time.
