Community Outreach
Pediatric Programs
Dana-Farber programs focus on the patient and family and support the belief in "total patient care" for the body, mind, and spirit. Programs are divided into the following categories:
Patient and Family Activity Program
This program is designed to meet a wide range of developmental and emotional needs for patients that range in age from infancy to young adulthood. A full-time patient activity coordinator works with volunteers to engage patients and families in activities to reduce anxiety and stress through creative expression and communication. Activities are provided within the clinic and in the community. Examples of activities include:
- Teen Red Sox Weekend at Camden Yards, Baltimore, M.D.
- Outward Bound
- Family Day at Fenway Park
- Summer and Winter Festivals
- Variety of craft and creative activities
Patient and Family Education Program
This program is an important aspect of providing care to patients and families. When a child has cancer, family members want as much information as possible about the disease, treatment options, and what to expect during treatment. Through the Blum Family Pediatric Resource Room, patients and families have access to computers, as well as written and audiovisual materials. Specific educational materials developed by Dana-Farber staff are available to help explain treatment, manage side effects, and provide care at home, among others. Several major programs are run out of the Pediatric Resource Room including:
- Pediatric Entertainment Program: Tickets to local venues, such as museums, Duck Boats, and the Aquarium, are distributed to patients and families in order to provide some diversion from the rigors of treatment.
- Teen Look Good Feel Better: This program, which is jointly sponsored by Dana-Farber and ACS, provides teen cancer patients with tips about health coverings, make-up, and nutrition during treatment. Sessions are offered for both male and female patients.
- "Making Music" Program: a licensed music therapist runs weekly classes for pediatric patients using music as a form of healing.
- Parent Education Classes: Weekly parent education classes are held to teach parents about caring for a central line, managing side effects, pediatric nutrition, home care and blood counts.
Patient and family support groups and programs
These groups and programs offer a wide range of services for patients and their families. Examples include:The Perini Family Survivors' Center was launched in 2004 to serve as an umbrella organization for survivorship activities. The Center houses two clinical programs for cancer survivors. The David B. Perini, Jr. Quality of Life Clinic is in its 13th year of operation as a multidisciplinary pediatric survivorship program. The Perini Clinic works to meet the unique medical and psychosocial needs of childhood cancer survivors through biweekly clinic sessions. Evaluation is provided by a multidisciplinary team of experts in childhood cancer survivorship in collaboration with other sub-specialists. The clinic also serves as a source of information and support for survivors of childhood cancer and their families through many educational programs held throughout the year. Established in early 2005, The Lance Armstrong Foundation (LAF) Adult Survivorship Clinic serves the needs of adult cancer survivors. Modeled on the multidisciplinary approach of the Perini Clinic, the LAF Clinic provides patients with a complete assessment of their survivorship needs, with referrals to specialists as appropriate. The Perini Program's research efforts are designed to reduce and eliminate harmful effects of treatments for past, current and future patients.
Highlights of the Perini Clinic's 2005 educational and support programs are:
- Facing Forward: Adult Challenges for the Childhood Cancer Survivor
To help survivors of childhood cancers face the emotional, physical, and social challenges that come with hearing "You're cured," the Perini Clinic again held Facing Forward, its fall support group series for survivors' aged 20 to 40. The workshops explored the aspects of everyday life affected by cancer and survivorship, like self-image, relationships, health worries and school or work. Grouped by diagnosis and age at diagnosis, the participants focused on how best to cope with the realities of survivorship. The program was offered one evening per week over the course of four weeks in the fall of 2005.
- Survivor Weekend at The Hole in the Wall Gang Camp
The Sixth Annual Perini Clinic Survivors' Weekend was held at The Hole in the Wall Gang Camp in April 2005. Attended by survivors of pediatric brain tumors, the weekend served as a valuable forum for survivors from the Stop and Shop Family Neuro-Oncology Clinic. The well-rounded weekend program featured survivorship lectures accompanied by a variety of social and recreational events.
- Living Proof: Celebrating Survivorship
Held in early June, this weeklong celebration of survivorship featured informational tables set up throughout the week in the Dana Lobby and outside of the Jimmy Fund Clinic. Tables were staffed by volunteers and educational handouts and giveaways were provided. The week concluded with a speaker series and cocktail reception. The speaking program included a range of speakers including a breast surgeon who is a cancer survivor, a 12-year-old leukemia survivor and his mother and two young men who survived pediatric cancers.
- Nourishing Mind Body and Soul
Run in both July and November, 2005, this workshop facilitated by Stephanie Vangsness, MS, RD/LDN and Mary Jane OTT, RNCS, MN explored how the mind/body connection relates to and impacts eating behaviors.
- Survivor Education Series
This series is designed to be an educational forum for adult survivors of childhood and adult onset cancers. The six-week series ran on Thursday nights in the fall. Topics included Nutrition for Survivors, Coping After Cancer, Learning from Survivorship, Exercise and Survivorship, Cardiac Health, Fertility Issues for Survivors and Health Insurance Issues for Cancer Survivors.
- Just for Me: A Day for Young Survivors, their Siblings and Parents
Held March 2005, this day of education and fun was designed to engage our young survivors, their siblings and parents in learning about the survivor's treatment and to give them a place to talk about their experience and to teach them healthy lifestyle behaviors. Participants had the opportunity to ask doctors and nurses questions about their disease and treatment, to participate in several fun projects, and to meet other survivors and families who have been through similar experiences. During the day spent at the Jimmy Fund Clinic, parents had the opportunity to exchange feelings, thoughts and information. Siblings also met other siblings of cancer survivors and shared their individual memories and responses. At the end of the program, everyone got together to share notes from the day.
The Island of Hope program is designed to empower youth and their families to face their lives with cancer. The mission is accomplished through experiential-based, outdoor activities reinforced by regularly scheduled follow-up activities. In its sixth year, Dana-Farber provided staff nurses, social workers, and child life specialists to support the campers based at Thompson Island.
The Stop &Shop Family Pediatric Brain Tumor Clinic has been addressing the many medical and psychosocial concerns of children with brain and spinal cord tumors for over a decade. The multi-disciplinary team, comprised of highly trained clinicians and allied health professionals, focuses on the complex needs of these patients. The program spans diagnosis and management, including surgery, radiation therapy, chemotherapy, and other components that address the needs of patients and families. The Neuro-Oncology Outcomes Clinic provides specialized care for children who have completed brain and spinal cord therapy and may be experiencing late effects of treatment. Additionally, the Brain Tumor Program routinely has parent, teen, and young adult groups that focus on educating patients and families about late effects, provide psychosocial support, and opportunities for building relationships between families facing similar life long issues as a result of the patient's tumor and treatment.
The Division of Pediatric Psychosocial Services is a multidisciplinary group of psychologists, social workers, resource counselors, and a special educator who provide comprehensive psychosocial services to patients and their families. The mission of the division is to reduce the potential emotional and psychosocial complications of pediatric cancer and to maximize the child's and family's psychological and emotional adjustment to the illness. An assessment is done for each family at the time of diagnosis. Individual, family, couples therapy, and behavioral work can be provided. Crisis intervention and triage are also available. The division has several educational and support programs to meet the diverse needs of patients and their families. Some examples are:
- School Liaison Program is designed to assist children after treatment whose cancer or cancer treatment has resulted in learning difficulties or other problems related to attending school. Services include educating school personnel about cancer, its treatment and long-term effects; facilitating neuropsychological evaluations; consultation with families and school systems to address educational needs; and, educating communities about long-term effects of childhood cancer and treatment.
- The School Workshop is offered annually by the School Liaison Program for school personnel who are directly involved with our patients. The workshop focuses on increasing understanding and communication between the child, family and school personnel. The long-term challenges faced by children treated for cancer and their siblings are also addressed.
- Parent Night Series is a series of educational forums where parents receive important information regarding school issues, such as neuropsychological assessment, parent skill-building in collaboration with schools, and relevant facts about the Special Education Laws as they pertain to pediatric patients. The program both educates and empowers parents to help their children succeed in school.
- Sibling Programs are designed to provide group support for siblings of patients. A one-day outward-bound program for teens, age 11-19, was held in the spring of 2004 at Thompson Island. Other groups, both inpatient and at the clinic are being planned for the rest of the year. With the use of puppet shows and group activities, the special needs and concerns of siblings are addressed.
- Bereavement Day is an annual workshop for bereaved parents to provide them support, to help them network with one another, and to offer psycho-education about the bereavement process. There is also a one-day parent group offered during the holidays to help parents find and use coping strategies to support them in getting through a potentially difficult time.
Pediatric Advanced Cancer Team is a multidisciplinary team that promotes quality care at the end-of-life. The team facilitates discussion of end-of-life issues among hospital caregivers, home care, hospice, and the family, and it works collaboratively with them to organize a plan for end-of-life care.
The Back to School Program is a program developed in 1997 to assist the patient, family and school community with the sometimes difficult transition from active treatment back to the school. Nurses, social workers, psychologists and child life specialists travel to the child's school and provide age appropriate education about pediatric cancer to the child's classmates, teachers and parents. These visits alleviate anxiety and encourage sensitivity and support for the child experiencing cancer.
