Parental Partnership Program to Improve Resources for Pediatric Sickle Cell Care

when parents of with any Their mission vision from quality support, fully-functioning, and integrity [1]. Sickle cell anemia is an autosomal recessive inherited blood disorder caused by a single point mutation in the β-globin gene on chromosome 11. There are approximately 100,000 people living with sickle cell disease (SCD) in the United States and millions worldwide. Individuals with homozygous SCD make abnormal hemoglobin S protein, which undergoes polymerization under hypoxia conditions producing long rod-like structures in red blood cells, i.e. sickle cells. This sickled shape leads to vaso-occlusion by blocking small blood vessels to deprive vital organs of oxygen causing periodic acute pain episodes, other clinical complications and early death [2]. Due to the chronic nature of SCD and the demands required of families, which impacts quality of life, some parents become overwhelmed after receiving newborn screening test results. To help caregivers, we identified community resources to improve medical outcomes. Abstract Objective: The organization Parent to Parent (P2P) of Georgia is a community organization that offers parental support as a core resource for families with children who have special health care needs, disability, and mental health diagnoses.


Characterization of clinic population
A) Shown is the distribution of patients receiving services in the CHOG Comprehensive Sickle Cell Program summarized by sickle cell disease genotypes. Abbreviations: HbSS, sickle cell anemia; HbSC, heterozygous hemoglobin S and hemoglobin C; HbS + -Thal, hemoglobin S- + -Thalassemia; HbS 0 -Thal, hemoglobin S- 0 -Thalassemia; Other represent HbCC, hemoglobin CC and α-Thalassemia.

B)
Summary of the age distribution of patients.

C)
Shown is the primary caregiver attending clinic visits at the time of Parent Partner interview. The other category represents aunts, godmother, legal guardian, or self.  Table 1.
A few families with significant social services need required initial interviews ~45 minutes. During the intake interview we collected data on insurance status; the majority of families had State or Federal Assistance program mainly Medicaid (78.1%), while 9.15% had private insurance and 12.75% were self-pay (Table 1).

Types of Referrals Requested by Families
We identified a wide range of services requested by families as And to make the transition as smooth as possible we should make sure that they also learn the skills and resources that is available to maintain good health after transition. The Parent Partners becomes a motivation team for both the parents and caregivers and patients.
Many studies and reviews have made it known that various types of social support that could play a role in resiliency in children with SCD (parents, teacher, classmate, and close friend support) to identify the most effective subtype of social support that is associated with resiliency in children with SCD [7]. This pilot study has an actual person (the Parent Partner), in the clinic as a social service support worker to work on cases and observe the inclining of independency and compliant. Once Parent Partners helped the families take care of the basic needs, the parents/caregivers started asking in depth questions. This reflects in the types of referrals by the Parent Partners (Table 1). For an example, inquiring information about planning for the future and adult services. This happened for two reasons. First reason, the majority of the clinic's population was at that time from ages 6 to 12 years. And second reason, was because working with age group showed that they were turning 9 or 10 and the families were showing improvement on doing their own research and showing signs of their independency.
In conclusion, with all resources being available to patients and their families will continue to be independent and be better equipped to deal to sickle cell disease on a day to day basics. With a full team, we can also may sure every child has every appointment scheduled, necessary test and scans scheduled, and the resources needed for home. Most of the time a family is overwhelmed with the basic information to help take care of their child. With the assistant of a program like P2P of Georgia in a full partnership with the Pediatric Sickle Cell Program, most families will be independent by the time their child with Sickle Cell becomes a teenager.