Lessons Learned from Talking with Parents about the Role of Hematopoietic Stem Cell Transplantation in the Treatment of Children with Sickle Cell Disease

Autor/inn/en	Friedrich, Paola; Steinfield, Elizabeth; Kim, Francis; Hays, Mary Margaret; Lehmann, Leslie; Sprinz, Philippa
Titel	Lessons Learned from Talking with Parents about the Role of Hematopoietic Stem Cell Transplantation in the Treatment of Children with Sickle Cell Disease
Quelle	In: American Journal of Health Education, 46 (2015) 3, S.144-156 (13 Seiten) PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1932-5037
DOI	10.1080/19325037.2015.1021059
Schlagwörter	Diseases; Parent Attitudes; Children; Cytology; Familiarity; Knowledge Level; Pretests Posttests; Standardized Tests; Parent Education; Access to Information; Parent Surveys; Case Records; Client Characteristics (Human Services); Followup Studies; Intervention; Clinical Diagnosis; Child Health; Massachusetts + Suchen Sie Ihr Suchwort? Disease; Krankheit; Elternverhalten; Child; Kind; Kinder; Zytologie; Wissensbasis; Standadised tests; Standardisierter Test; Parents education; Elternbildung; Elternschule; Case reports; Fallsammlung; Follow-up studies; Kontaktstudium; Master-Studiengang
Abstract	Background: Hematopoietic stem cell transplantation (HSCT) is currently the only cure for sickle cell disease (SCD), but only a fraction of eligible children proceed to transplantation. We aimed to understand parental awareness and perceptions as a contributor. Purpose: To discuss HSCT with parents of children with SCD and assess their awareness and perceptions. Methods: A standardized educational session and pre--post surveys were used. Results: Fifty-seven parents completed the educational session. Parental awareness of HSCT and independent search for information were poor; only 40% of parents were previously aware of HSCT as a treatment option in SCD. However, 91% reported that the information was valuable, and 67% that they would consider HSCT as a treatment option for their child. Parents' main concerns were death, isolation, and infertility. Discussion: Our results support the use of structured educational materials during routine SCD health visits to provide information to parents about HSCT and begin discussing complex treatment options. Translation to Health Education Practice: Our results are relevant to clinicians, health educators, and patient advocates responsible for counseling parents of children with chronic conditions about high-risk curative options. A patient education sheet was generated from this experience and will be used to standardize ongoing parental education at our institutions. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2020/1/01