It is vital for parents of a newly diagnosed infant with sickle cell disease to quickly acquire accurate health education about medical decision making. Parents obtain health education from several sources including health care professionals, peers and self directed education (internet, books).
This exploratory sequential mixed methods research project was designed to understand the parent perspective related to the process of acquiring health education about sickle cell disease. The qualitative goals focused on identifying categories and themes about the process of parent education. The quantitative goals focused on confirming these themes so that results could be generalized to a larger population.
Eight parents of children with sickle cell disease and no prior experience caring for a child with sickle cell disease participated in semi-structured individual interviews. Four researchers independently coded interview transcripts (In Vivo coding) to capture unique, purposeful statements made by parents. Sixty four codes agreed upon by the four researchers were entered into a final codebook. Codes were organized into categories and themes and recategorized until the four researchers unanimously agreed upon the final categories and themes. The validity of the qualitative findings was attained through triangulation, inter-coder agreement, and peer review. The results of the qualitative arm of the study were confirmed by collecting and analyzing quantitative surveys of 22 parents of infants with sickle cell disease.
Four themes were identified from the parent interviews: Fear of Disease, Self Education, Experience with Video Education, and Trust of Sources. The greatest motivator for parent education was fear of the disease in their child (27 of 64 final codes were related to fear of disease). The high level of fear of the disease played a strong role in promoting parent's desire to acquire health education. Prior to arriving for a first visit in sickle cell clinic, parents had acquired self education using the internet, sickle cell pamphlets, library books, and peer education. The use of a video education program at our institution provided a high level of health education for the majority of patients and stimulated parents to pursue self health education topics they had not previously considered. Finally, parents expressed a high level of trust with multiple sources when health education focused on identifying sickle cell complication and course of disease. The level of trust decreased when therapeutic interventions were discussed (penicillin). The results from the surveys confirmed these findings as 81% of parents obtained health information prior to their first visit and 95% recommended that information be sent to them at time of diagnosis rather than waiting until their child's first sickle cell clinic visit. Trusted internet sites and educational pamphlets were identified by parents to be the most useful information for early health education and names of parents of children with sickle cell (peer education) was identified to be the least desirable means to acquire early health education.
First time parents of children with sickle cell disease express a strong desire to acquire health education prior to their first sickle cell visit due to a fear of the disease. Interventions to enhance parents' understanding of sickle cell disease can begin at the time of diagnosis rather than the first sickle cell clinic visit.
No relevant conflicts of interest to declare.
Asterisk with author names denotes non-ASH members.