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.
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.
Frontline Provider Sheet
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.
Ancillary Information Resources
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.
The American Cancer Society (ACS) is a nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives and diminishing suffering from cancer, through research, education, advocacy and service. Services include:
Information--cancer diagnoses and treatment options
Transportation--for radiation, chemotherapy and surgery appointments, including airline miles, if applicable
Pain/Nausea Medication--assistance for those with no health insurance or no prescription coverage
Clinical Trials--matching services for various clinical trials aimed at developing improved treatments
Lodging--reduced cost lodging (rates vary based on location)
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 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:
Clinical Assistance—programs including mentoring, medication and supplement assistance, and contact information for services such as clinical care, genetic counselors, dietary consultation, exercise consultation and social services
Education—materials, newsletters and an annual conference aimed at educating patients, families and the public
Clinical Trials—hosting independent, federally sponsored NIH research, and pharmaceutical-based multi-center clinical research studies to test the latest treatments to help discover and develop new and more effective treatment strategies
Advocacy—support/involvement in local, regional and national advocacy efforts, including fundraising events, influencing public policy, and increasing awareness
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:
Specialized care coordination, according to your child’s medical needs and location.
Communication coordination with health care providers, schools, and other groups/individuals
Transition support to help you prepare for/manage the changes your child will go through over time
Financial support for families who qualify ranging from care-related travel expenses to medical equipment
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:
Noogieland--a program for children and teens with cancer, with cancer in the family, or have lost a loved one to cancer
Kid Support--10-week group for children ages 4-12 to help learn to live with the stresses of cancer
Family Activities/Social Events—workshops, seasonal parties and outings for children, teens and their families
Psychosocial Support—wellness sessions/classes including yoga, meditation, journaling, massage, etc.
Greater Illinois Pediatric Palliative Care Coalition
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:
Nursing Care--focus on pain and symptom management, under the guidance of a pediatrician
Counseling--services for children and family members provided by a social worker, chaplain and/or art/music therapists
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’ 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:
Access to a robust lending library of books, videos, and periodicals that are specific to early childhood intervention issues.
The Imerman Angels (IA) mission is to provide personalized connections that enable one-on-one support among cancer fighters, survivors and caregivers. Services include:
1-On-1 Cancer Support--a person fighting cancer is partnered with someone who beat the same diagnosis, providing the fighter the opportunity to receive encouragement and guidance from someone uniquely familiar with the situation
Caregiver Support--a caregiver of someone fighting cancer is partnered with a caregiver who relates to and can understand their situation
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:
Support Groups—groups for children/teens with cancer, parents/guardians, siblings, relatives, and friends
Wellness—programs to promote mind, body and fitness for cancer patients and caregivers (ex: yoga, reiki, etc.)
Creative Arts Expression—art/recreation programs such as The Smile Within, Teen Art Studio, and Time Out
Education—programs for cancer patients and caregivers such as journaling, cooking, knitting, and collage-making.
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:
They are under 21
They are medically eligible
They require ongoing home nursing
They can be cared for safely at home
The cost of caring for them at home is less than it would be in a hospital or nursing facility.
This also includes help with home modifications if necessary.
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.
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:
Clinics—funding two pediatric, multidisciplinary clinics in Chicago with experts that specialize in the diagnosis and management of neuromuscular diseases; providing financial coverage of up to four visits a year
Summer Camp—kids ages 6-17 can attend a free week of camp in an accessible setting with modified activities
Support Groups--provide emotional and practical support to families affected by neuromuscular disease
Medical Equipment—offer financial assistance with equipment repairs and maintain a supply of loaner equipment
Resources—connection to a community offering referrals, education, advocacy, and general assistance
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:
Emotional Support—connections to experienced resources to whom they can talk to either in person or by phone
Personal Assistance—professional/volunteer assistance with necessities; ex. housecleaning, lawn care, or meals
Resources—a consolidated location to research medications and treatment protocols via links to reputable websites and access to other service providers who can assist with other associated needs
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.
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:
Convenient Location—located in the heart of Springfield's medical community
Comfortable Environment—private bedrooms, home-cooked meals and playrooms for children
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:
Convenient Locations—near Lurie Children’s Hospital in Chicago, near Hope Children’s Hospital in Oak Lawn, near Loyola University Medical Center in Hines, and near University of Chicago Comer Children’s Hospital in Chicago
Comfortable Environment—private bedrooms, home-cooked meals and playrooms for children
Support—non-clinical and sibling support services, and recreational activities
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:
A program for children birth to 18 that provides families with a chance to spend recreational time together to relax, regroup and return home with a renewed sense of strength and hope
Family Activities: movie screenings, circus trips, mother-daughter makeovers, spa days, sporting events, picnics
Families have reported the program provides valuable connections with others facing similar challenges and “emotional companionship: for the journey, priceless family memories away from hospital or clinical settings, and rare opportunities for social and interpersonal interaction
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:
Connections/Family Support—programs including diagnosis information, individual and family counseling, support and networking groups, caregiver support, and grief/bereavement programs for all ages
Wellness—programs including survivorship celebrations, yoga, massage, Reiki, tai chi, meditation and crocheting
Resources—library with information and resources on types of cancer, treatment options, grief/bereavement, caregiver resources, guided imagery, relaxation, children’s resources, etc., that may be checked out for three weeks at a time
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:
Grants that support families battling cancer. We provide financial aid to patients or their siblings (children ages 8-18) whose participation in an athletic or artistic extracurricular activity has been or are at risk of being interrupted by the financial strain of cancer.
Support may be granted to multiple children in a family. Grants are capped at $500 per child and $2000 annually per family.
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:
Information/Education--classes, workshops, and speakers about various effects of cancer and ways to cope with the challenges presented by a cancer diagnosis (ex.—‘How to answer kids’ questions about cancer’)
Family Matters--educational and supportive program to normalize and validate the feelings of children and teens
Support/Networking--support groups to express thoughts/feelings, and to meet others in similar situations
** 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.