Navigating complex or life-threatening medical conditions in children requires comprehensive support that addresses not only the physical but also the emotional, social, and spiritual needs of both the child and their family. The MU Journeys – Pediatric Complex Care Team is dedicated to providing this holistic support through a comprehensive program focused on enhancing the quality of life for families facing these challenges. A key aspect of this support is palliative care, which the Journeys program expertly delivers to children and families within the MU Health Care system.
The MU Health Care Journeys Pediatric Complex Care Team staff, including Christina McHenry, CCLS; Sarah Younger, MD, IBCLC; Lacey Prater, MSW, LCSW, APHSW-C; and Sheila Zaweija, FNP, are dedicated to providing compassionate support.
The Journeys program offers a range of services designed to ease the burden on families and improve the well-being of children facing serious illnesses. These services are integral to pediatric palliative care and are tailored to meet the unique needs of each family.
Comprehensive Symptom Management
One of the primary focuses of the Journeys program is the effective management of distressing symptoms that often accompany serious illnesses in children. This includes addressing pain, shortness of breath, fatigue, constipation, nausea, appetite loss, and sleep disturbances. By proactively managing these symptoms, the Journeys team aims to improve the child’s comfort and overall quality of life. This expert symptom control is a cornerstone of pediatric palliative care, ensuring children can live as fully as possible despite their medical condition.
Expert Care Coordination and Navigation
The healthcare system can be complex, especially when managing a child’s serious illness. The Journeys program provides vital care coordination, acting as a central point of contact and communication between all members of your child’s healthcare team. This includes primary care physicians, specialists, and community providers. The team understands the challenges of managing appointments, insurance complexities, and various healthcare details. Journeys guides families through these processes, simplifying care navigation and reducing stress during difficult times. This coordinated approach ensures seamless and efficient care for your child.
Goal Setting and Values-Based Care
Recognizing that each family has unique priorities and values, the Journeys program emphasizes goal setting that is aligned with what matters most to you and your child. The team listens attentively to understand your hopes, concerns, and priorities. They then work collaboratively with you to establish realistic and meaningful goals for your child’s care. This patient-centered approach ensures that care decisions reflect your family’s values and preferences, empowering you in the decision-making process.
Proactive Disease Management and Planning
Journeys is committed to helping families effectively manage their child’s illness at home, aiming to minimize unnecessary hospital or emergency room visits. Through education, support, and proactive planning, the program empowers families to confidently care for their child in the familiar and comfortable environment of their home. Furthermore, the Journeys team assists with crucial future planning, including advanced care planning to document your healthcare wishes for your child. They also provide guidance on long-term care needs and transitions to adult care when appropriate, ensuring a smooth continuum of care as your child grows.
Compassionate Bereavement Support Services
Extending beyond medical care, the Journeys program recognizes the profound impact of loss and provides compassionate support services for families facing the death of a baby or child. These bereavement services include educational resources, support materials on grief, and memorial services to honor and remember children. Journeys offers resources for various types of loss, from miscarriage to the death of a child up to age 21, acknowledging the unique grieving process for each family. Follow-up support, including phone consultations and referrals to community resources, is also available to help families navigate their grief journey. These compassionate services are available regardless of where the loss occurred, emphasizing the program’s commitment to community support.
If you believe your child could benefit from the comprehensive and compassionate support offered by the MU Journeys program, please speak with your medical provider to request a consultation with the Journeys team. Eligible families will be contacted to schedule an initial meeting to discuss their needs and how Journeys can provide assistance. For any inquiries or to speak directly with a team member, please call 573-771-4266 or email Lacey Prater at [email protected]. The MU Journeys program is here to partner with you, providing expert pediatric palliative care and holistic support every step of the way.
