Abstract
BackgroundChildren with sickle cell disease (SCD) commonly have cognitive deficits, even among toddlers. Much medical literature emphasizes disease-based factors to account for these deficits. However, the social environment plays a large role in child development. To address the specific needs of early childhood, a monthly hospital-based education program was initiated to educate parents about child development. Education sessions were poorly attended (20-25%) and deemed unsuccessful. This study describes the development and implementation of a home-based education service to teach parents about SCD, developmental milestones and positive parenting techniques.MethodsThis was a prospective, single-arm intervention to study the feasibility of a home-based caregiver education program for families with infants and toddlers with SCD. Parents of children aged 0-3 years with SCD from one Midwestern hospital were approached to participate in a home-based program. The program followed the Born to Learn™ curriculum provided through the Parents as Teachers™ National Center. Reminder calls or texts were provided the day before each visit. Results of the first twenty-six months of the program are presented.ResultsA total of 62% (56 of 91) of families approached agreed to participate; all were African American. The majority of caregivers were single mothers with a high school education or less and whose children had Medicaid for health coverage. The phenotypes of SCD represented in this sample were similar to those in the general SCD population. Over 26 months, 39 families received at least one home visit. Parents of infants (younger than 8 months) were more likely to participate in the home-based education program than parents of older children, (Fisher’s exact test, p < .001).ConclusionsFor participating families, home-based visits were a feasible method for reinforcing clinic education. About 43% of eligible families participated in the education, a two-fold increase in the poor attendance (20%) for a previous hospital-based program. A home visitation program for parents of infants with SCD could offer an effective approach to helping these children overcome adverse environmental conditions that are compounded by the complexities of a chronic health condition.
Highlights
Children with sickle cell disease (SCD) commonly have cognitive deficits, even among toddlers
In order to ameliorate these challenges among the families of infant/toddlers with SCD, we proposed a home-based parent education program to reinforce information regarding SCD provided in the clinic as well as address developmental milestones
The purpose of the current study was to determine if a home based parent education program targeting parenting skills and typical developmental milestones was feasible as defined by 50% consent rate for those recruited for the study and at least 50% completion of scheduled home visits
Summary
Children with sickle cell disease (SCD) commonly have cognitive deficits, even among toddlers. To address the specific needs of early childhood, a monthly hospital-based education program was initiated to educate parents about child development. This study describes the development and implementation of a home-based education service to teach parents about SCD, developmental milestones and positive parenting techniques. In the United States (US), approximately 100,000 people live with sickle cell disease (SCD). SCD is an inherited blood disorder that causes red blood cells to be brittle, sticky and crescent shaped. Sickled cells have a shorter life span than normal red blood cells, and affected persons have chronic anemia. The abnormal cells are more likely to become trapped in blood vessels, causing vaso-occlusion and pain, the most common morbidity associated with the disease [2]. Other complications include cerebrovascular disease (stroke and cerebral infarcts), splenic sequestration (blood pools in the spleen), dactlyitis (swelling of the hands and feet), priapism (prolonged erection), acute chest syndrome and necrosis of the hip [3,4]
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