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Open Access Research article

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

Catherine Hoyt Drazen1, Regina Abel1, Terianne Lindsey1 and Allison A King123*

Author Affiliations

1 Washington University in St. Louis School of Medicine, Program in Occupational Therapy, 4444 Forest Park Pkwy, Box 8505, St. Louis, MO 63108, USA

2 St. Louis Children’s Hospital, One Children’s Place, St. Louis, MO 63110, USA

3 Department of Pediatrics, Division of Hematology and Oncology, Washington University School of Medicine, Campus Box 8505 4444 Forest Park Ave., St. Louis, MO 63108-2292, USA

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BMC Public Health 2014, 14:116  doi:10.1186/1471-2458-14-116

Published: 5 February 2014

Abstract

Background

Children 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.

Methods

This 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.

Results

A 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).

Conclusions

For 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.

Keywords:
Sickle cell disease; Development; Early intervention; Parent education; House calls