Caregiver Challenges - February 2022
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The Challenge of Being a Caregiver:
the unique perspective of a parent and provider

Becky Oakley, FNP-C, RN

After reading stories from a website that had a page dedicated to sharing funny moments that happened in families living with a child with medical complexities, I had to wipe my tears of laughter and take a huge, cleansing breath to regain my composure. When I showed my friend the stories on my tablet so that she could also enjoy the humor, my laughter erupted again. Much to my surprise, I was alone with my laughter. My friend was confused as to how these stories were anything but tragic and far from funny. She could not understand how I could laugh at these family stories that involved a child with serious, challenging, and difficult medical issues. For those of us living with a child with medical complexities, there is nothing like it - and it is hard to understand the ups and downs, joys and disappointments if you haven’t experienced it!

We’ve all heard the sayings, "You can either laugh or cry" or "Not all trials have to turn into tragedy." As both a parent of and practitioner with medically-complex children, I have been inspired to frequently ask, "How are we doing while living with children with serious pediatric illnesses?"

In a recent survey of parents who do not have access to palliative care:

  • 70% stated that their own personal health was negatively affected as they cared for their child with complex diagnoses
  • 80% indicated that their family feels ALONE in meeting the needs of their child with complex medical needs
  • 79% report that caregiving challenges cause severe stress in the relationships in their lives. 
Pediatric palliative care can address these challenges so that families have the support to handle the challenges and stresses that come with living with a child with medical complexities. Self-care and family care can maximize quality of life and reduce the negative health effects for all family members. 

How does pediatric palliative care help? 

Pediatric palliative care can improve the physical health of a child with medical complexities by providing an extra layer of medical care designed not to cure the disease, but to assist the child and family live with the extra demands of the child's diagnoses. By alleviating pain and enhancing the functional ability of the child and their family to participate in their world around them, a pediatric palliative care plan can help caregivers identify and resolve any current and unmet medical needs. The emotional well-being of the child with medical complexities and the family can improve as they foster resilience, adopt coping strategies, bolster stress management skills, recognize sibling needs and address caregiver fatigue. Spiritual focus can empower all involved to clarify purpose and meaning and to help find reconciliation with past events, peace in the present moments, and hope for the future.

It is possible to live well, share funny stories and laugh out loud while living with a child with a serious pediatric illness.  Pediatric palliative care is essential medical care. Pediatric palliative care addresses physical, emotional, and spiritual needs for the child with medical complexities and the whole family. We know kids living with serious illness are amazing, and we know that their parents and siblings are amazing as well - each and every day!  

To hear more from Becky, click on the Firefly Chat link below.

Becky Oakley, FNP-C, RN, is the Executive Director, Brades' Place. Becky has dedicated her life and nursing career to caring for children with life-changing diagnoses and disabilities. Becky adores her six children, who inspire her daily. Brades’ Place is named after her medically complex son, Brady, who taught her that children with unique traits do amazing things every day. 

 PPCC Firefly Chat:
The Challenges of Organizing Medical Data 

Listen to the latest PPCC Firefly Chat, The Challenges of Organizing Medical Data, where both a provider and caregiver discuss their experiences in trying to improve organization of medical data for their child and/or patients. During this Firefly Chat, the presenters highlight two tools that the Pediatric Palliative Care Coalition has worked to create to support families in their medical journey including the Care Plan Book and the Lightning Bug App. 

Click HERE to listen to the Firefly Chat.

Special thanks to the Firefly Chat presenters: Becky Oakley, FNP-C, RN; Cassie McCachren, Bereaved Parent and Parent of a Medically Complex Child; and Dana Dombrowski, MSW, LSW. 
PPCC regularly offers Firefly Chats, interactive virtual discussions that explore issues facing the pediatric palliative care community in Pennsylvania and beyond.  

Organizing Medical Data - Suggested Resources

PPCC The Lightning Bug App - Parent Testimonials. To download the app, Click HERE.

"Organizing is what you do before you do something, so that when you do it, it is not all mixed up."  ~ A. A. Milne

Article:  An exploration of care mapping among families of children with medical complexity (CMC) 

Care maps are visual diagrams that depict the complexity of caring for children with medical complexity (CMC). A care map illustrates all of the resources (people and places) needed to support a child with medical complexity and their family.  Click HERE to read the entire article.  

Special Issue: Abstracts of the American Academy for Cerebral Palsy and Developmental Medicine 69th Annual Meeting, 21–24 October 2015, Austin, Texas, USA. Volume 57, Issue S5
Care Map image used with permission from Cristin Lind. 


Register for the 2022 PPC Webinar Series 

Check out the 2022 PPC Webinar Schedule. We invite you and your colleagues to view the information and register for the webinar series.  Register individually or as a group for one webinar or the entire series. Discounts apply for multiple webinars and group registrations. 
Click HERE for 2022 PPC Webinar Information and Registration

Save the Dates - Upcoming Events

  • PPC Webinar:  Tues, Mar 15, 2022 
    Minute to Minute Mindfulness: Self-Care Strategies for Busy Lives

    Click HERE for more information.
  • Courageous Parents Network Event: Wed, Mar 23, 2022
    In the Room: When the Child is a Twin

    Click HERE for more information.
PPCC is a non-profit organization.
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