Heller Learning for Living Center
The John and Annette Heller Learning for Living Center, established in 2016, provides children and their families with the tools needed to live their lives to the fullest on the journey through cancer treatment and beyond.
The Center provides a number of educational and support services that complement direct medical interventions provided at OSF HealthCare Children’s Hospital of Illinois and the St. Jude Midwest Affiliate, resulting in more comprehensive, life-affirming treatment.
- Adolescent and Young Adult (AYA) Program
Teens and young adults with cancer have different needs and treatment challenges from those of children or older adults. In addition, recent medical research has shown that teens and young adults who have cancer have much better outcomes if they are treated by a pediatric cancer team at a children’s hospital, even when compared with teens and young adults who have the same treatment plan but are treated by an adult cancer team at an adult hospital.
The Adolescent and Young Adult Program will have the following characteristics/be providing the following services:
- Access to AYA-focused clinical studies, other research
- A Multidisciplinary Team approach
- Nurse practitioner/nurse coordination
- Adolescent medicine child life services
- Group peer interaction opportunities
- Social Work services
- Educational/vocational support, to assist with current school performance and future goal planning
- Nutritional and other health/fitness counseling and education
- Behavioral health resources, including counseling
- Transition services to assist with return to normal activities, eventual movement to adult care services, other
- Patient and family advisory committees
- Dedicated, multifunctional clinic spaces
- Peer mentoring
- After Completion of Therapy (ACT) Clinic
Because of the wide variety of cancer diagnoses and the toxicity of some of the multiple treatment options, survivors of childhood cancer can have a wide range of late effects. Once they reach young adulthood, childhood cancer survivors may range from healthy individuals who mainly need surveillance for secondary malignancies or other conditions arising in adulthood; to those with very significant chronic illness and disability. Because of this, current guidelines recommend at least annual life-long follow up, with specific attention to the needs of childhood cancer survivors.
- Services Provided by an ACT/Survivor Clinic
- A dedicated time and place for the Clinic, scheduled at least monthly to start
- Staffing by a doctor and/or nurse practitioner with experience in the late effects after treatment for childhood cancer; and a nurse coordinator
- Easily accessible social work services to assist with things such as insurance coverage and general independent life skills
- State-of-the-art screening for an individual’s risks of late effects
- Referrals to appropriate specialists for further evaluation of specific late effects
- Ongoing health and wellness education
- Education to adult primary care providers on survivorship in pediatric cancer
- Assistance with transition to adult care, with emphasis on the social-ecological components of transition readiness (ex: age at diagnosis, having insurance, assistance in health care decision-making, motivation, comfort in speaking with providers, self-management, other)
- Mental Health, Neuropsychological and Neurodevelopmental Services
There is much research-supported evidence validating the real-life experience that children and families benefit from psychosocial support to reduce distress both during and after cancer treatment. The psychosocial support services provided need to cover a spectrum - from psychosocial assessment and support with counseling and other modalities; to neurocognitive and neurodevelopmental monitoring and assistance to children whose cancer, therapy, or late effects may result in learning or behavioral challenges.
Services to be provided would include:
- Routine systematic assessments of the psychosocial health care needs of the patient and family members by a qualified professional throughout treatment and afterwards
- Regular patient assessments to evaluate things such as social and relationship difficulties; distress, anxiety, and depression; and/or risky health behavior.
- Access to psychosocial support and intervention (counselor, psychologist, psychiatrist, other) in response to assessment findings
- Early and ongoing assessments of the mental health needs of the parents and caregivers, with access to appropriate interventions
- Psychosocial support for siblings of the child with cancer (since they are an at-risk group for difficulties), including education to parents on ways to anticipate and meet siblings’ needs
- Opportunities for social interactions for the child with cancer, in keeping with their unique characteristics, such as developmental level, preferences for social interaction, and health status
- Access to neuropsychological testing, evaluation, and assistance for subgroups of children with special needs in this area – those with tumors of the central nervous system; acute lymphoblastic leukemia; diseases requiring radiation to the head, including those receiving total body irradiation prior to a bone marrow or stem cell transplant; very young children who received intensive chemotherapy and had prolonged hospitalizations because of treatment and side effects; other children with specific concerns about their school performance, learning, or development
- Nutritional and Wellness Services
A childhood cancer patient’s nutritional status may have an impact on a number of things – patient quality of life (both physical and mental functioning), incidence of infection or metabolic problems while on therapy, chemotherapy drug dosing, treatment-related toxicity, cancer survival outcomes, and even long-term survivors’ quality of life and risk of secondary cancers and mortality as adults.
Nutritional Services, through trained nutritional specialists and other components, would provide:
- Education to families on ways to maximize nutritional health during and after treatment
- Education to older children and teenagers re: the need for good nutrition so that they can take part in steps required to keep their nutritional level as high as possible
- Education re: the types of and reasons for nutrition-related problems (treatment-caused nausea, vomiting, diarrhea; change in sense of taste from chemotherapy; radiation-related malfunction of the stomach or intestines; etc)
- Application of appropriate measurement techniques (weight, height, BMI, mid upper arm circumference, etc) to assess of nutritional status and body composition periodically throughout therapy to maximize function and survival
- Instruction on a proper diet to complement the patient’s exercise programming
- Assistance with specialized feedings (tube feedings to the stomach, intravenous feedings, other), if needed
- Assistance with prevention of overweight/obesity during treatment (due to drugs such as prednisone), or after completion of treatment
- Education and support to lay a sound foundation of good nutritional habits for life beyond cancer treatment
- Patient and Family Educator
A Patient and Family Educator would:
The child and family’s journey through treatment for childhood cancer is one requiring understanding of a large volume of new information related to the specific cancer diagnosis and treatment, and how to best navigate the often complex and stressful care environment. A Patient and Family Educator is well-suited to help guide the child and family through this extended period.
- Provide basic education to the patient and family regarding the Clinic and Hospital personnel and operations, the relationship with St. Jude, and immediate expectations around specific diagnostic and treatment needs
- Educate the patient and family on specific cancer diagnosis content, psychosocial issues, and anticipatory guidance related to disease, treatment, acute and long-term effects, hospitalization, procedures and psychosocial adaptation
- Identify educational needs of the patient and family through a family assessment and collaboration with clinic physicians and staff
- Facilitate learning by gaining understanding of the family’s ability to learn, cultural and religious practices, emotional barriers, desire and motivation to learn, physical and/or cognitive limitations, language barriers, and readiness to learn
- Encourage participation in decision-making about health care options by facilitating the patient's and family’s understanding of the child’s health status
- Maximize care skills by increasing the patient’s and family’s ability to cope with the child’s health status/prognosis/outcome
- Select, adapt, and individualize patient education information for the patient and family by evaluating available brochures, printed materials, video tapes, and external resources in light of the age, culture, religious practices, and language of the patient and family
- Develop, implement, and evaluate new patient and family educational programming, including structured teaching tools
- School and Career Support Services
Returning to school as soon as they can after being diagnosed with cancer is important for most children because it’s ‘normal’ and a place for fun and friends, not just books and teachers. It is also a sign to patients and families that they have a real potential for recovery from the cancer diagnosis. For adolescents, continuation of their studies can have a significant impact on their future career and adult lives.
School and Career Support Services provide:
- In-hospital bedside tutoring, if needed
- Individualized tutoring in the clinic for children with frequent long clinic stays
- Education to school personnel (teachers, principal, counselor, nurse, coach, etc) and/or students re: the patient’s diagnosis and treatment, if desired by the patient and family
- Written documentation to the school re: any needed changes in the child’s school routine, scheduling, or other plans; medications that may need to be given at school, any special accommodations (equipment, excuse from PE class, etc) needed at school, special precautions (as with exposure to infections in other children), emergency management
- Assistance with Individual Education Plans (IEPS) or 504 school health plans
- Social skills training; training on activities of daily adult living
- Assistance with post-high school career planning
- Information regarding college/ trade scholarships, other financial support
- Supportive (Palliative) Care Services
Supportive/palliative care is the complete care of a child and family facing a life-threatening illness, regardless of the current disease status. Prognostic uncertainty, and not the likelihood of survival, should determine the need for supportive/palliative care.
The Supportive Care Team is able to provide:
- Services delivered via an Interdisciplinary Team approach, in concert with all the members of the Cancer Care Team
- Assistance with exploration of short- and long-term goals of care through shared decision-making with the patient and family, in order to help guide management and decision-making at various points in the cancer journey
- Physician and nursing expertise in pain and symptom management at any point in the patient’s treatment. This may be particularly helpful in end-of-life care, both in the inpatient and outpatient settings
- Chaplaincy and other services to address spiritual care effectively, both for the patient (in a developmentally appropriate fashion) and the family
- A smooth, patient- and family-focused transition to end-of-life care, through facilitation of end-of-life discussions with a focus on reframing hope and decision-making in light of changes in prognosis
- Medical and psychosocial guidance regarding hospice care in hospital or at home, or at the formal Hospice Home facility
- Ongoing grief and bereavement support services for the parents, other caretakers (grandparents), and siblings