RESOURCES: COPING
This section will provide members of the sickle cell community with information regarding different resources that are available to them to help them cope with the challenges of sickle cell disease. We will also provide interviews with and articles by different service providers and medical professionals so that we may come to a better understanding of what they have to offer.
The following is the first in this series:
A Social Worker's Point of View
By Ebele Iloka, CSW
My role in the Sickle Cell office at Kings County Hospital (KCH) and University Hospital at Brooklyn (UHB) involves many diverse duties:
- Contacting parents of newly diagnosed infants
- Providing genetic counseling and education about sickle cell
- Educating the community through health fairs and symposiums
- Co-facilitating a support group for patients and family members
- Assisting in medical follow up and data recording
- Coordinating summer camp
CONTACTING PARENTS OF NEWLY DIAGNOSED INFANTS
Laboratory of Newborn Screening and Genetic Services tests every newborn in New York for eight congenital conditions. A caseworker from Newborn Screening will contact me with information on an infant diagnosed with sickle cell disease (SCD). Then I will contact the mother, to explain the status of her child and the importance of medical follow up. A clinic appointment will be made for the infant and parents for re-testing at UHB 8:30am Wednesday morning.
PROVIDING GENETIC COUNSELING AND EDUCATION ABOUT SICKLE CELL
During the clinic visit I will meet with the parent(s) to explain how their child inherited SCD. Many parents did not know they have the sickle cell trait (SCT) or if they have a history of SCT or SCD in their family. I inform the parents about what is SCD, how the disease can possibly affect their child, the medical treatment available for infants, and the pediatric clinic procedure at UHB. We also explore their emotional reaction to the diagnosis and any support systems.
EDUCATING THE COMMUNITY THROUGH HEALTH FAIRS AND SYMPOSIUMS
Many people in the community do not have even a basic understanding about SCD. There are myths about SCD that laypersons and medical staff believe to be fact. Unfortunately, this is due to lack of education. The Sickle Cell Office has participated at KCH and UHB health fairs during the summer. Staff members have also been invited to churches, schools, and other agencies to speak and disseminate written materials. Our office has sponsored symposiums in the spring and fall at UHB. These conferences are free to the public.
CO-FACILITATING A SUPPORT GROUP FOR PATIENTS AND FAMILY MEMBERS
Beverly Lowe, the social worker for adults and adolescents, and I offer a support group on the third Saturday of the month. The participants of the group range from parents of toddlers to adult patients. The group shares experience, understanding and compassion with each other. Sometimes we invite speakers to discuss a particular topic, or have a general discussion within the group. The average size of the group is about 15 people.
ASSISTING IN MEDICAL FOLLOW UP AND DATA RECORDING
I contact the parents of children under the age of five to schedule clinic appointments. Many parents are compliant with bringing their child to clinic. However, some are not able to do so for a variety of reasons such as: lack of medical coverage, certain HMO's are not accepted by UHB without a referral, they are unable to take time off of work and no one else is available to bring the child to clinic, they live far from UHB, they are in denial that their child has SCD, etc. It is important for the parent to contact our office, if any of these reasons prevents her child from receiving medical care. It is particularly essential that children under five receive proper treatment because of the risk of infections and other complications.
I send statistical information to Newborn Screening about the amount of children seen at UHB. There are about 30 babies a year born with SCD at KCH and UHB.
COORDINATING SUMMER CAMP
I coordinate camp for children ages 6-16 for the Brooklyn, Queens, and Long Island Sickle Cell Hospital programs. The two camps the children are sent to are Hole in the Wall Gang Camp in Ashford, CT and Double H Hole in the Woods Ranch in Lake Luzerne, NY. Both camps are FREE. There is an infirmary at both camps with 24-hour medical coverage. I accompany the children for one week at each camp. The camp experience greatly benefits the children who attend.
For further information contact:
Ebele Iloka, CSW
Scott Miller, MD
Kings County Hospital
451 Clarkson Ave., B Bldg. 10th Fl. Rm. 1041
Brooklyn, NY 11203
(718) 245-4077
http://www.hscbklyn.edu/SUNY/Research/
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