Loving Care and Support in Your Time of Need
CompassionNet is a community-based pediatric and perinatal palliative care program that provides support and care to families caring for a child with a potentially life-threatening illness or families expecting the birth of a child with a serious medical condition. Starting at the time of diagnosis, our interdisciplinary team collaborates with other providers to address children and families’ physical, emotional, social, and spiritual needs and improve quality of life.
About CompassionNet
The team at CompassionNet includes social workers, nurse practitioners, child life specialists, physicians, nurses, and volunteers. Every CompassionNet family has a supportive care social worker or specialist who provides emotional and practical support and helps connect families with financial, therapeutic, and community resources. Our medical team specializes in pediatric and perinatal palliative care coordination and consultation, as well as pain and symptom management. Child life specialists help the children in our program and their siblings understand and cope with diagnoses, treatment, and emotions.
While our program requires a referral from your child’s pediatrician or specialist, services are free for families. There is no cost for you to participate in CompassionNet.
Some children are discharged from CompassionNet when their condition improves, while others remain on the program as they continue to receive treatment. If a child’s condition worsens, we provide compassionate end-of-life and bereavement care to the family. Throughout the ups and downs of a child’s illness, we will be there, celebrating with families when they receive good news and offering support and guidance when it is needed the most.
For more information about CompassionNet, please call 1-800-308-3914 or email Rochester Regional Health Hospice
Eligibility Criteria
Our program is designed for families of children/youth under the age of 21 who are diagnosed with a medical condition that meets at least one of the criteria outlined below and are also enrolled in an insurance plan managed by a participating health insurance provider (such as Excellus Health Plan, Inc. or Univera Healthcare) or support through an alternate payer contracted with CompassionNet:
- A medical condition for which curative treatment is possible, but may fail
- A medical condition which is progressive and treatment is comfort oriented only
- A potential life-limiting condition whereby the child is experiencing a progression or exacerbation of the disease which may be evidenced by increased frequency or duration of acute care intervention; and/or requiring intensive pain and symptom management
- A condition involving severe, non-progressive disability during a time of extreme medical fragility placing the child at risk to die
For more information, please call 1-800-308-3914 or email CompassionNet.questions@rochesterregional.org.
CompassionNet's Families
These photos were taken at CompassionNet's SibsROCK! day. We recognize that it's hard to have a brother or sister that has undergone medical treatment. SibsROCK! is a day when siblings can have fun with other kids who "get it."
Family Stories
Hear direct from families who have positively been impact by the support and care our CompassionNet program has offered them.
Frequently Asked Questions
CompassionNet is a community-based pediatric and perinatal palliative care program that provides support and care to families caring for a child with a potentially life-threatening illness as well as families expecting the birth of a child with a serious medical condition.
Pediatric palliative care is specialized medical and psychosocial care for children with serious illnesses. It focuses on providing relief from the symptoms, pain, and stress of a serious illness. The goal is to improve quality of life for both the child and the family. It is appropriate at any age and at any stage of an illness and can be provided along with treatment meant to cure.
Perinatal refers to the time period surrounding a baby’s birth, and it generally stretches from the 20th week of a woman’s pregnancy until the child is 1 month old. CompassionNet’s perinatal program provides support to families that are expecting the birth of a child with a serious medical condition. Our team cares for families through the remainder of their pregnancy and remains involved after a child is born.
CompassionNet meets families where they are, providing support both in the home and during hospital stays. We partner with the child’s pediatrician, specialists, and a variety of community resources in an effort to ensure continuity of care.
Our team includes social workers, nurse practitioners, child life specialists, physicians, nurses, and volunteers. We also offer additional support through our collaborative partnerships with therapeutic providers in the community when indicated.
Children are referred to CompassionNet by their physician, nurse practitioner, or physician assistant. Please speak with your child’s medical team if you think that your child might benefit from our program. Please see our Eligibility Criteria section to view the criteria that providers should consider when referring a child to CompassionNet.
Please feel free to contact us! If you are already enrolled in CompassionNet, you can also contact your supportive Care Social Worker or Specialist.
Phone: 1-800-308-3914
Fax: 1-585-475-8801