Friday, August 7, 2020

Breaking bad news: Down syndrome

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. 

https://canadiem.org/breaking-bad-news/



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

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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 ... ...?

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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.  


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