Online Pain Management Program for Parents of Preschool-Age Children with Sickle Cell Disease: A Pilot Study

Date Added
December 1st, 2016
PRO Number
Jeffrey Schatz

List of Studies

Blood Disorders, Pain

Sickle cell disease (SCD) is a genetic blood disorder present at birth characterized by painful vaso-occlusive episodes. Pain episodes typically result in approximately one to two severe pain crises requiring hospitalization per year along with another ten pain episodes managed at home. Pain crises can emerge as early as six to twelve months and most children with the most common form of the disease (HbSS), experience a pain episode requiring hospital care by the age of five years. Promoting better coping with pain in preschool age children likely requires additional adaptation of methods and consideration of a developmental framework. Very young children have limited coping skills, a limited ability to communicate pain, and it is up to the primary caregiver to correctly interpret and treat the pain that a child may be experiencing. Despite the frequency of painful episodes early in life in SCD, there has been little work to-date addressing pain management in young children with SCD. Management of pain episodes early in life by parents may be an important developmental context for later child and family coping with pain, as well as coping with other aspects of this chronic health condition. Consequently, the current study will target parents of preschool age children with SCD through an online video-based platform in order to teach pain management skills to help to identify and manage SCD-related pain episodes.

Recruitment Contact
Kelsey Smith

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