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Each day
WILL BE SPECIAL IN ITS OWN WAY

The CP Journey

As a healthcare professional, you know that the journey of a child with cerebral palsy (CP) is unique.


In this section, we will review the emotional journey of caregivers and provide you with information and key topics that may be useful to cover with them.


We also invite you to watch the stories of four families in our real stories section.

Some caregivers might have already seen certain warning signs and might have already shared their concerns with you, while others might be completely unaware or are in a state of denial, functioning as if everything is normal.

 

 

→CLICK ON THIS LINK TO WATCH THE FULL VIDEO IN OUR REAL STORIES SECTION

Before a confirmed diagnosis, caregivers may feel concerned as they know their child is having challenges and they are uncertain about what this means. They may become frustrated because they feel healthcare professionals are not listening to them and are not giving them enough information.

* Schematic representation based upon Nestlé Health Science’s patient and caregiver research for 2016 and 2017. This graph is provided for information and indicative purposed only.
† Time between each period varies between caregivers and their child’s condition.

→CLICK HERE TO GET MORE RECOMMENDATIONS THAT CAN HELP YOU WITH YOUR PATIENT

Caregivers have certain emotional reactions that differ depending on the context and on their level of understanding or acceptance of their child’s status.

Whatever the case, the time when caregivers are informed about their child’s condition is a life-changing moment for them.

Following a confirmed diagnosis, parents go through a grief experience that resembles what one goes through with the death of a family member.

 

 

→CLICK ON THIS LINK TO WATCH THE FULL VIDEO IN OUR REAL STORIES SECTION

Caregivers frequently show strong negative emotions when you inform them that their child has cerebral palsy (CP). Shock and trauma are usually their first reactions, as they feel unprepared and lost. Uncertainty follows as caregivers do not necessarily fully understand CP and what they need to do or change to take care of their child. Their thoughts may become clouded as they start having concerns of the sudden changes affecting their routine.

Shortly afterwards, some caregivers may go through a denial stage with misplaced hope that things can be fixed or that their child can recover from CP.

Some caregivers question why they are in such a situation and may feel despair.

All throughout this emotional roller coaster, caregivers may feel a lack of support from healthcare professionals and from the society around them.

Taking the extra time to discuss their concerns and fears will be a huge source of help and support to them. The sooner you identify difficult emotional situations, the better for them and for your patients.

* Schematic representation based upon Nestlé Health Science’s patient and caregiver research for 2016 and 2017. This graph is provided for information and indicative purposed only.
† Time between each period varies between caregivers and their child’s condition.

Having come to terms with cerebral palsy (CP), caregivers find the small victories intensely encouraging. For instance, they may feel particularly joyful and happy when their child feels calm, eats well and sleeps well.

Challenges, such as bad feeding experiences, illnesses, surgeries and lack of sleep, are still frequent and may cause negative emotions, such as:

Caregivers may suffer when family members, friends and people in their surroundings aren’t completely understanding of their needs and routine.

Caregivers may find it difficult to understand when their child is in pain due to the child’s restricted communication skills.

In certain circumstances, financial consideration may be a huge burden on caregivers and may increase their worries in how to best care for their child.

Caregivers may go through periods of shock again as they are still coming to terms with the extra demands needed to care for a child with CP.

* Schematic representation based upon Nestlé Health Science’s patient and caregiver research for 2016 and 2017. This graph is provided for information and indicative purposed only.
† Time between each period varies between caregivers and their child’s condition.

Your support, as well as the support of other colleagues, is extremely important for caregivers and their children all along the journey.

Listen to what Yehoshua’s mum has to say about their therapy journey.

 

 

→CHECK THE RECOMMENDATIONS SECTION TO HELP YOU HELP THEM THE BEST WAY YOU CAN

Here is a brief list of recommendations that can help you better support them:

  • When the diagnosis is confirmed, and it is time to tell caregivers about their child’s condition, take the extra time needed to clearly explain the diagnosis and to clarify any doubts they have.
  • You may like to recommend literature or support groups that include other families, if you feel that a caregiver has a lot of questions and needs to talk things through.
  • You may also like to suggest to caregivers that they attend workshops that explain more about CP. A recent study showed that this helps them be better equipped to care for their child.

How to communicate understanding, alleviate distress and provide support to your caregivers and patients1


Strategies Skills Process tasks
Recognize or elicit a patient’s empathic opportunity Acknowledge
Encourage expression of feelings
Notice patient’s nonverbal communication
Work toward a shared understanding of the patient’s emotion/experience Ask open questions
Clarify
Restate
Avoid leading questions
Avoid giving premature reassurance
Empathically respond to the emotion/experience Acknowledge
Validate
Normalise
Praise patient efforts
Identify patient’s strengths and sources of support
Facilitate coping and connect to social support Ask open questions
Endorse question asking
Make partnership statements
Make referrals
Express a willingness to help

 

Table adapted from: Pehrson C et al. Responding empathically to patients: Development, implementation, and evaluation of a communication skills training module for oncology nurses. Patient Educ Couns. 2016;99(4):610–16.

References:

  1. Pehrson C et al. Responding empathically to patients: Development, implementation, and evaluation of a communication skills training module for oncology nurses. Patient Educ Couns. 2016;99(4):610–16.