Educating Families of Children With Sickle Cell Disease
Educating Families of Children With Sickle Cell Disease
Children with SCD are a vulnerable population. With a home-based program, we were not only able to achieve a two-fold increase in a single SCD education session but were also able to provide a monthly intervention. The ongoing visits facilitated the development of a trusting relationship that permitted the parent educator to identify barriers to developmental progress previously unrecognized in the clinic. Based on observations and discussions with parents during the study, many of the families who care for a child with SCD struggle with understanding typical developmental milestones and lack knowledge of activities that encourage and challenge the child to meet these goals. Home-based services that address parenting skills and therapeutic activity along with repetition of concerns specific for SCD are a feasible way to reach this population. A dedicated cellular phone increased retention by providing reminder phone calls and text messages. The convenient communication opportunities from text messaging were well received. Providing skilled educational and supportive services in the home is also beneficial by helping parents make modifications to the home environment to increase safety and accessibility to appropriate activities by the child. More research should be conducted to determine the effects and outcomes of children receiving this intervention. A home evaluation of parent interaction, environment, and child development at baseline and following the intervention would objectively demonstrate the outcomes of providing in home services to this population.
Conclusions
Children with SCD are a vulnerable population. With a home-based program, we were not only able to achieve a two-fold increase in a single SCD education session but were also able to provide a monthly intervention. The ongoing visits facilitated the development of a trusting relationship that permitted the parent educator to identify barriers to developmental progress previously unrecognized in the clinic. Based on observations and discussions with parents during the study, many of the families who care for a child with SCD struggle with understanding typical developmental milestones and lack knowledge of activities that encourage and challenge the child to meet these goals. Home-based services that address parenting skills and therapeutic activity along with repetition of concerns specific for SCD are a feasible way to reach this population. A dedicated cellular phone increased retention by providing reminder phone calls and text messages. The convenient communication opportunities from text messaging were well received. Providing skilled educational and supportive services in the home is also beneficial by helping parents make modifications to the home environment to increase safety and accessibility to appropriate activities by the child. More research should be conducted to determine the effects and outcomes of children receiving this intervention. A home evaluation of parent interaction, environment, and child development at baseline and following the intervention would objectively demonstrate the outcomes of providing in home services to this population.
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