Development and feasibility of a home-based education model for families of children with sickle cell disease

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.

Youth with Sickle Cell Disease: Genetic and Sexual Health Education Needs

“…Approximately 75% of participants were enrolled public insurance (Medicaid, Medicare, and/or Social Security) indicating that the majority of participants demonstrated financial limitations sufficient to qualify for public insurance, which is consistent with the local and national pediatric SCD population. 32,33 Participants across all age ranges reported sexual activity.…”

Community Health Workers as Support for Sickle Cell Care

“…79 In St. Louis, CHW home visitors promote early cognitive development, promote clinic attendance, and medication compliance. 80 A recent systematic review of CHW interventions for children with chronic health conditions listed SCD as appropriate for CHW intervention and research. 57 Figure 1 lists possible roles for CHWs in SCD.…”

Prevalence of Developmental Delay and Contributing Factors Among Children With Sickle Cell Disease

“…While these findings are important to comprehensive medical care that includes screening and transfusion, many of these children also experience understudied social challenges associated with their environment. The vast majority of patients with SCD in the United States are African American, and about 70–80% of SCD patients receive government‐assisted health insurance . Socioeconomic status (SES) and the home environment affect children's literacy skills, language, and memory .…”