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PICU Supports includes tools meant to be used as needed by the family (with support from the navigator) or by the navigator to support HTM communication.
This is a book created by the study team to give families basic information about how to support themselves in the PICU and about the kinds of medical issues sometimes encountered in the PICU. The Handbook was written by parents who have actually had a child in the PICU. There is a wealth of information on what to expect in the PICU, a glossary, and resources for parents and their families.
The PICU Handbook is not meant to be read from “cover to cover,” but rather to be a resource used as needed. Information in the PICU Handbook may not pertain to everyone because not every child in the PICU requires the same kind of treatment and/or medical support.
View the handbook by selecting a link below.
This is included in the PICU Handbook. Additional pages can be provided to families as needed. The diary provides a structured place for families to keep track of what is happening with their child and to consider the needs and/or goals they have for their child and/or themselves.
This sheet provides a succinct summary of the family’s psychosocial needs. The navigator will provide this sheet to the “frontline provider” (PICU team resident or APN or hospitalist) weekly or more if needed. The navigator will convey this information to the PICU attending as needed.
This sheet, to be kept at the patient’s bedside, is a list of non-PICU providers who visit the patient and/or family during the day. Each provider will be asked to fill in the log when he/she visits the patient and/or family.
This is a checklist of activities that the navigator should ensure are being tended to by someone on the HTM and/or him/herself.
This is a packet of information to be given to families of children who die in the PICU. It provides helpful information relevant to parental and family bereavement.
The navigator will provide families with additional resources as needed/requested to ensure they have adequate information about the issues pertinent to their child. Given the heterogeneity of medical issues cared for in the PICU, these resources will be identified on an as-needed basis. Examples of such resources include websites that provide information about the child’s disease and/or educational materials about the child’s medical problems. All ancillary information resources will be approved by the site PI prior to being given to a parent.
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All Kids is an Illinois Medicaid program that offers comprehensive healthcare to many Illinois children, regardless of immigration status or health condition. Children are eligible if:
The mission of the Bear Necessities Pediatric Cancer Foundation is to eliminate pediatric cancer and to provide hope and support to those who are touched by it. Services include:
The Conversation Project
theconversationproject.org | National
The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care.
The Courageous Parents Network is a web and video-based network, conceptualized by a bereaved parent and overseen by a board of MDs, fellow parents, social workers, and a psychologist, that provides parents caring for critically ill and medically complex children with tools and virtual support. With 180 short videos featuring fellow parents sharing their experiences, the Courageous Parent’s Network provides education and support.
The Cystic Fibrosis Foundation (CFF) is the leading organization committed to finding new therapies and ultimately a cure for CF, and to improving the lives of those with the disease.
Services include:
The Cystic Fibrosis Institute
Phone: 847.998.3434 | cysticfibrosisinstitute.org | Illinois
The Cystic Fibrosis Institute (CFI) supports those affected by cystic fibrosis in the Chicagoland area and tries to make a difference by being an active source of assistance and advocacy in dealing with the everyday challenge of cystic fibrosis. Services include:
Specialized Care for Children has been offering free care coordination for families of children with special health care needs throughout Illinois for over 75 years. They are a division of the University of Illinois, Chicago. Services include:
Gilda's Club Chicago is a community where men, women and children who are living with cancer and their families can find support and resources. The center is located in Chicago. Services include:
Gilda's Club Quad Cities is a cancer support community providing people living with cancer, and all who touch their lives, access to other people going through the same experience. The center is located in Davenport, IA (but also serves Illinois). Services include:
The Greater Illinois Pediatric Palliative Care Coalition (GIPPCC) is a group of organizations and individuals working to improve access to community-based support for Illinois children with serious illnesses and their families. Pediatric palliative care teams work in cooperation with a child’s primary medical team to provide support within the home setting, including:
The HIPP Program is a state-run program that subsidizes the cost of health insurance premiums for families who either have private health insurance or are eligible to enroll in private health insurance and who have high medical expenses.
Illinois Department of Human Services – Early Intervention
Phone: 217.524.1596 | dhs.state.il.us/page.aspx?item=31889 | Illinois
Illinois’ Early Intervention program helps provide resources and support to families with children birth to age three that have diagnosed disabilities, developmental delays, or substantial risk of significant delays. Services include:
Imerman Angels
Phone: 312.274.5529 x1303 | imermanangels.org | National
The Imerman Angels (IA) mission is to provide personalized connections that enable one-on-one support among cancer fighters, survivors and caregivers. Services include:
Leukemia & Lymphoma Society
Phone: 312.568.7728 | lls.org/il | Illinois / National
The mission of the Leukemia & Lymphoma Society (LLS) is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. Services include:
LivingWell Cancer Resource Center
Phone: 630.262.1111 | livingwellcrc.org | West Chicagoland
LivingWell Cancer Resource Center is dedicated to providing people living with cancer and their loved ones the support and educational services they need when faced with a cancer diagnosis. The center is located in Geneva. Services include:
Make-A-Wish® Illinois
Phone: 312.602.9435; 800.978.9474 | illinois.wish.org | Illinois / National
Make-A-Wish® Illinois grants wishes to children with life-threatening medical conditions to enrich the human spirit with hope, strength & joy. Eligibility requirements include:
Medically Fragile Technology Dependent (MFTD) Waiver
mftdwaiver@gmail.com | mftwaiver.org | Illinois
The MFTD Waiver is a home and community based services waiver run though the Division of Specialized Care for Children. It is a Medicaid program granted to the state of Illinois by the government that waives standard Medicaid rules about child eligibility and allows for more coverage for children who would normally require permanent hospitalization to receive their care. Children in the state are eligible if:
This also includes help with home modifications if necessary.
Miracles from Mia
miraclesfrommia.org | Illinois
Miracles from Mia began as Miracles for Mia, an effort to raise money for Mia Clements. Following Mia’s death, the organization was reformed to Miracles from Mia, and is an organization that raises money for families with any medical crisis and financial need. To do so, they host events, sponsoring a certain number of families, and give the entirety of the funds raised to those families so that it can be used for any expense it needs to be.
Muscular Dystrophy Association--Chicago
Phone: 312.254.0632 | mdausa.org | Chicago
The Muscular Dystrophy Association raises funds to defeat more than 40 forms of neuromuscular disease through programs of worldwide research, medical and support services, health education, and advocacy. Services include:
Normal Moments
Phone: 630.888.8120 | email: tricia@normalmoments.org | normalmoments.org | West Chicagoland
Normal Moments, Inc. is devoted to supporting parents with critically ill children in the home, in the hospital, and via web resources so that they can spend as much time as possible sharing the most normal moments possible with their children. We help alleviate the home stresses while parents sit with their hospital-bound child. Services include:
Nursing and Personal Care Services (NCPS)
Phone: 800.323.4769
Nursing and Personal Care Services, or NCPS is a nursing program for children under the age of 21 who are not as medically complex, or have fewer nursing needs. Children typically qualify for around 50 hours of nursing. NCPS only covers children who are Medicaid-enrolled.
Ronald McDonald House Charities of Central IL
Phone: 217.528.3314 | rmhc-centralillinois.org | Central Illinois
This Ronald McDonald House provides a temporary "home away from home" for families whose child is receiving treatment for a serious illness at a medical facility in the Springfield area in an effort to reduce stress, keep the family intact, and enhance the quality of life for families. Services include:
Ronald McDonald House Charities of Chicagoland & Northwest Indiana
708.423.5285 | rmhccni.org | Chicagoland
This Ronald McDonald Houses provide a “home away from home” for families of pediatric patients receiving treatment in Chicagoland hospitals in an effort to reduce stress, keep the family intact, and enhance the quality of life. Services include:
Starlight Children’s Foundation Midwest
Phone: 312.251.7827, x12 | starlight.org | Chicagoland
The Starlight Children’s Foundation helps seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities. The main program is called Great Escapes:
The Cancer Support Center
Phone: 708.798.9171, x204 | CancerSupportCenter.org | South Chicagoland
The mission of the Cancer Support Center is to provide free, comprehensive resources that help people affected by cancer and their family’s process through their experience in a way that is as supportive and healing as possible to achieve the highest quality of life. The center serves south Chicagoland and has two convenient locations--in Homewood and Mokena. Services include:
Twelve Oaks Foundation
Phone: 847.508.1168 | 12oaksfoundation.org | Illinois
Twelve Oaks mission is to provide a resource that will help defray the cost of sports and community programs for children of families suffering financial hardship, with a focus on families struggling with the burdens associated in fighting cancer. Working with local organizations, the 12 Oaks Foundation will provide grants to families in need so their kids won't have to miss some of the best parts of childhood. Funds are paid directly to the child's designated organization. Services include:
Wellness House
Phone: 630.654.5107 | wellnesshouse.org | West Chicagoland
Wellness House offers psychosocial support and information as a complement to medical treatment to improve the quality of life and to provide comfort and community so those affected by cancer feel less alone and more empowered. The center is located in Hinsdale. Services include:
Blogging Sites to help you share and communicate with others:
Video Chat:
** A special thanks to the Pieces of the Puzzle Collaborative for providing information on many of these resources. The Pieces of the Puzzle Collaborative is an alliance of various non-profit organizations partnering together to minimize/eliminate obstacles to service and to facilitate increased access to quality psychosocial, supportive care for all children with life-threatening medical conditions, as well as for their parents/guardians and siblings.
