Community-Based Pediatric Palliative Care: Integrating Creative Arts & Integrative Therapies to Improve Quality of Life in Children.

Improve the quality of life of children living with a complex, chronic medical condition(s).

Photo of Linda Del Vecchio-Gilbert
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Founding Story: Share a story about a key experience or spark that helps the network understand why this project got started or a story about how you became inspired about the potential for this project to succeed.

I have cared for children living with complex, chronic medical conditions for over 20 years. We tend to focus on what we can do to "save" this child and very often put their quality on the back burner. In 2010, I developed an in-patient palliative care program at a children's hospital in RI. However, not all kids are admitted to the hospital, but instead live everyday in their homes with these conditions. So how can we optimize the child's quality of life in the community? Easy solution...

Which categories describe you? (the answer will not be public)

  • White (for example: German, Irish, English, Italian, Polish, French, Caucasian)

If you chose to self-identify your race, ethnicity, or origin, please share here: (the answer will not be public)

American-Italian

Website

http://www.magnoliapediatricsri.com

Location: Where is your organization headquartered? [State]

  • Rhode Island

Location: Where is your organization headquartered? [City]

Cranston

Location: Where is your project primarily creating impact? [State]

  • Rhode Island

Location: Where is your project primarily creating impact? [City]

All cities/towns in Rhode Island as well as a few cities/towns in MA and CT.

Problem: What problem is this project trying to address?

In the U.S., more than 500,000 children live every day with chronic, life-threatening conditions who require compassionate, comprehensive, consistent, and coordinated palliative care. Less than 10% of children receive palliative care, which will enhance quality of life, preserve dignity, minimize suffering, optimize functioning, and provide the opportunity for personal and spiritual growth.

How can we improve the quality of life of 500,000 children living with complex, chronic medical conditions? The solution is EASY!!! Bring palliative care to the community and not just in the hospital!!! Children are living every day in their homes and are not necessarily admitted to the hospital. We need to integrate palliative care, which will focus on the child's physical, emotional, psychosocial, and spiritual well-being in the community. It is not just about medicine, but integrating creative arts (yoga, music, art, karate), integrative therapies (massage, meditation, reiki), parent support groups, sibling events, family education (infant massage classes), and pet therapy into the child's plan of care, which will focus on the whole child. Magnolia Pediatrics is the first private practice in the country focusing on palliative care for children. It is located in Rhode Island, and its mission to provide the best quality of life for any child living with a complex, chronic and/or life-limiting condition. Magnolia Pediatrics will provide care that is meaningful and will foster the child and family’s hopes and will provide an extra layer of care, along with the other medical providers, to support the child and family’s emotional, social, spiritual, and physical needs. There is no cost to the family because a parent should not have to pay to improve their child's quality of life.

Magnolia offers weekly events for all families, including families who are not patients of the practice. We offer monthly music therapy, creative arts and crafts, yoga, reiki, massage, meditation, storytelling, parent support group, video gaming club, karate, and pet therapy during every event. 

Bio:

To provide some background information, I am a doctorally prepared pediatric nurse practitioner board certified in Primary Care Pediatrics, Advanced Hospice and Palliative Nursing, and Pain Management. I have 20 years of experience caring for children with complex chronic conditions, such as cancer, cystic fibrosis, Duchenne muscular dystrophy, spinal muscular atrophy, lissencephaly, Trisomy 18, and mitochondrial diseases. Prior to creating Magnolia Pediatrics, I worked as the consulting pediatric nurse practitioner in palliative and end-of-life at Notre Dame Pediatric Palliative Program in Worcester, MA. I was also instrumental in the development of the Pediatric Palliative Care Program at Hasbro Children’s Hospital in Providence, RI. In addition, I have worked on the Pain Team at Boston Children’s Hospital and at Memorial Sloan-Kettering Cancer Center in New York, NY.

Is your model focused on any of the following traditionally underserved communities?

  • Other

Does your model work within any of the following sectors?

  • Community Development and Empowerment
  • Mental Health
  • Other

If you chose "other," please share the sector you work within here:

Any child living with a complex, chronic medical condition in the U.S.

Year Founded

2016

Project Stage

  • Growth (the pilot has already launched and is starting to expand)

Example: Walk the network through a specific example of what happens when a person or group engages with your solution.

Here is a quote from a mother whose daughter is diagnosed with Trisomy 9 - "Truly one of the only times we have been at an event like that where we felt like we didn't stick out...such lovely families and kindness!!!!" This was in response to a Family Day we had for all the families of Magnolia Pediatrics. Just in the five months of being open, parents and children have already expressed an improvement in their child as well as siblings quality of life.

Impact: What was the impact of your work last year? Please also describe the projected future impact for the coming years.

We just opened in January 2016!!!!!

Organization Type

  • for-profit

Annual Budget

  • $10k - $50k

Financial Sustainability Plan: What is your solution’s plan to ensure financial sustainability?

Magnolia Pediatrics is reimbursed by a few insurance companies, which is beginning to cover the rent and utilities. All of services, such as yoga, karate, creative arts, music therapy, massage, meditation, pet therapy, video gaming mentorship, and parent group, are not covered by insurance. Parents should not pay for quality of life for they children. Future plan --> become a non-profit in order to grant write and accept donations/fundraising.

Unique Value Proposition: How else is this problem being addressed? Are there other organizations working in the same field, and how does your project differ from these other approaches?

Magnolia Pediatrics is the only outpatient private practice focusing solely on the quality of life of children living with complex, chronic medical conditions and their families (i.e. medical care, integrative therapies, and creative arts). 69% of pediatric hospitals have palliative care programs for children who are admitted to the hospital. However, special health care needs = 11.2 million children!!! 27% have conditions that affect their activities usually, always, or a great deal and potentially could benefit from PP/HC, but are not receiving it......

Reflect on the Field and its Future: Stepping outside of your project, what do you see as the most important or promising shifts that can advance children’s wellbeing?

This is clearly not a "business" that generates money; however, quality of life is not about money. It is about focusing on making TODAY better for the child and his/her family. We can do this so simply by coming together and looking a the whole child and the entire family unit. Medicine does not take away all suffering and can sometimes cause more suffering. We need to focus on the child's physical, emotional, psychosocial, and spiritual well-being. They need to be kids and do "kid" things. That is why we need to integrate "integrative" therapies and creative arts.

Source: How did you hear about the Children’s Wellbeing Challenge? (the answer will not be public)

  • Other

Referral: If you discovered the Challenge thanks to an organization or person other than Ashoka, who was it? (the answer will not be public)

Dayle Joseph - Assistant Provost and Director of Nursing at New England Institute of Technology, East Greenwich, RI

1 comment

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Photo of Charlie
Team

Hi Linda - Thank you for sharing your work with the Children's Wellbeing Initiative. Your work to increase the quality of life today and the future for children is amazing. As I understand, you are working to increase the quality of life for children with chronic conditions by providing safe places for these children to be exposed to the arts and receive therapies.

A couple of questions you can consider expounding on are why shouldn't parents have to pay for these services and what approach you would take to have a sustainable company. For the first question, explain more about the existing costs for parents and other examples of why parents should not need to pay for these services. Second, develop more of an idea of if becoming a nonprofit is you only option or not. Keep up your great work on making the world a better place to live for so many.