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

BMC Public Health

Allison A King¹  Terianne Lindsey²  Regina Abel²  Catherine Hoyt Drazen² 

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

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

Others  :  1161268
DOI  :  10.1186/1471-2458-14-116

 received in 2013-06-25, accepted in 2014-01-31,  发布年份 2014

【 摘 要 】

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.

【 授权许可】

   
2014 Hoyt Drazen et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

【 参考文献 】

• [1]Sickle Cell Disease (SCD) http://www.cdc.gov/NCBDDD/sicklecell/data.html webcite
• [2]Platt OS, Brambilla DJ, Rosse WF, Milner PF, Castro O, Steinberg MH, Klug PP: Mortality In Sickle Cell Disease – Life expectancy and risk factors for early death. N Engl J Med 1994, 330(23):1639-1644.
• [3]Adeyoju AB, Olujohungbe ABK, Morris J, Yardumian A, Bareford D, Akenova A, Akinyanju O, Cinkotai K, O'Reilly PH: Priapism in sickle-cell disease; incidence, risk factors and complications – an international multicentre study. BJU Int 2002, 90(9):898-902.
• [4]Steinberg MH: Management of sickle cell disease. N Engl J Med 1999, 340(13):1021-1030.
• [5]Schatz J: Brief report: academic attainment in children with sickle cell disease. J Pediatr Psychol 2004, 29(8):627-633.
• [6]Ohene-Frempong K: Cerebrovascular accidents in sickle cell disease: rates and risk factors. Blood 1998, 91(1):288.
• [7]Kwiatkowski JL, Zimmerman RA, Pollock AN, Seto W, Smith-Whitley K, Shults J, Blackwood-Chirchir A, Ohene-Frempong K: Silent infarcts in young children with sickle cell disease. Br J Haematol 2009, 146(3):300-305.
• [8]DeBaun MR, Armstrong FD, McKinstry RC, Ware RE, Vichinsky E, Kirkham FJ: Silent cerebral infarcts: a review on a prevalent and progressive cause of neurologic injury in sickle cell anemia. Blood 2012, 119(20):4587-4596.
• [9]Pegelow CH: Longitudinal changes in brain magnetic resonance imaging findings in children with sickle cell disease. Blood 2002, 99(8):3014-3018.
• [10]Armstrong FD, Thompson RJ Jr: Cognitive functioning and brain magnetic resonance imaging in children with sickle cell disease. Pediatrics 1996, 97(6):864.
• [11]Schatz J, Brown RT, Pascual JM, Hsu L, DeBaun MR: Poor school and cognitive functioning with silent cerebral infarcts and sickle cell disease. Neurology 2001, 56(8):1109-1111.
• [12]Schatz J, Finke RL, Kellett JM, Kramer JH: Cognitive functioning in children with sickle cell disease: a meta-analysis. J Pediatr Psychol 2002, 27(8):739-748.
• [13]Hogan AM, Kirkham FJ, Prengler M, Telfer P, Lane R, Vargha-Khadem F, de Haan M: An exploratory study of physiological correlates of neurodevelopmental delay in infants with sickle cell anaemia. Br J Haematol 2006, 132(1):99-107.
• [14]Armstrong FD, Elkin TD, Brown RC, Glass P, Rana S, Casella JF, Kalpatthi RV, Pavlakis S, Mi Z, Wang WC, et al.: Developmental function in toddlers with sickle cell anemia. Pediatrics 2013, 131(2):e406-e414.
• [15]Thompson RJ, Gustafson KE, Bonner MJ, Ware RE: Neurocognitive development of young children with sickle cell disease through three years of age. J Pediatr Psychol 2002, 27(3):235-244.
• [16]Aygun B, Parker J, Freeman MB, Stephens AL, Smeltzer MP, Wu S, Hankins JS, Wang WC: Neurocognitive screening with the Brigance Preschool screen-II in 3-year-old children with sickle cell disease. Pediatr Blood Cancer 2011, 56(4):620-624.
• [17]Schatz J, Finke R, Roberts CW: Interactions of biomedical and environmental risk factors for cognitive development: a preliminary study of sickle cell disease. J Dev Behav Pediatr 2004, 25(5):303-310.
• [18]King AA, Strouse JJ, Rodeghier MJ, Compas BE, Casella JF, McKinstry RC, Noetzel MJ, Quinn CT, Ichord R, Dowling MM, et al.: Parent education and biologic factors influence on cognition in sickle cell anemia. Am J Hematol 2013. Advance online publication. doi:10.1002/ajh.23604/pdf
• [19]Farber MD, Koshy M, Kinney TR, the Cooperative Study Of Sickle Cell D: Cooperative study of sickle cell disease: demographic and socioeconomic characteristics of patients and families with sickle cell disease. J Chronic Dis 1985, 38(6):495-505.
• [20]Rodriguez ET, Tamis-LeMonda CS: Trajectories of the home learning environment across the first 5 years: associations with children’s vocabulary and literacy skills at prekindergarten. Child Dev 2011, 82(4):1058-1075.
• [21]Pan BA, Rowe ML, Singer JD, Snow CE: Maternal correlates of growth in toddler vocabulary production in low-income families. Child Dev 2005, 76(4):763-782.
• [22]Caughy MB, O'Campo P: Neighborhood poverty, social capital, and the cognitive development of African American preschoolers. Am J Community Psychol 2006, 37(1–2):141-154.
• [23]Chase-Lansdale PL, Gordon RA: Economic hardship and the development of five- and six-year-olds: neighborhood and regional perspectives. Child Dev 1996, 67(6):3338-3367.
• [24]Nord CW, Lennon J, Liu B, Chandler K: Home literacy activities. Nat Cen Edu Stat 2000, 2(1):19.
• [25]Engle PL, Black MM: The effect of poverty on child development and educational outcomes. Ann N Y Acad Sci 2008, 1136(1):243-256.
• [26]Klebanov PK, Brooks-Gunn J, McCarton C, McCormick MC: The contribution of neighborhood and family income to developmental test scores over the first three years of life. Child Dev 1998, 69(5):1420-1436.
• [27]Bradley RH, Caldwell BM: The relation of home environment, cognitive competence, and iq among males and females. Child Dev 1980, 51(4):1140-1148.
• [28]Zigler E, Pfannenstiel J, Seitz V: The parents as teachers program and school success: a replication and extension. J Prim Prev 2008, 29(2):103-120.
• [29]Learn the signs. Act early http://www.cdc.gov/ncbddd/actearly/index.html webcite
• [30]Wang WC, Grover R, Gallagher D, Espeland M, Fandal A: Developmental screening in young children with sickle cell disease. Results of a cooperative study. Am J Pediatr Hematol Oncol 1993, 15(1):87-91.
• [31]Grant Steen R, Hu XJ, Elliott VE, Miles MA, Jones S, Wang WC: Kindergarten readiness skills in children with sickle cell disease: evidence of early neurocognitive damage? J Child Neurol 2002, 17(2):111-116.
• [32]Tarazi RA, Grant ML, Ely E, Barakat LP: Neuropsychological functioning in preschool-age children with sickle cell disease: the role of illness-related and psychosocial factors. Child Neuropsychol 2007, 13(2):155-172.
• [33]Schatz J, McClellan CB, Puffer ES, Johnson K, Roberts CW: Neurodevelopmental screening in toddlers and early preschoolers with sickle cell disease. J Child Neurol 2008, 23(1):44-50.
• [34]Chua-Lim C, Moore RB, McCleary G, Shah A, Mankad VN: Deficiencies in school readiness skills of children with sickle cell anemia: a preliminary report. South Med J 1993, 86(4):397-402.
• [35]Janz NK, Becker MH: The health belief model: a decade later. Health Educ Behav 1984, 11(1):1-47.