Improving Parental Psychosocial Functioning and Early Developmental Outcomes in Children With Sickle Cell Disease
Improving Parental Psychosocial Functioning and Early Developmental Outcomes in Children With Sickle Cell Disease
There are all significant risk factors for poor early cognitive development and, as such,
 neurocognitive deficits have been demonstrated in pre-school children with sickle cell
 disease (SCD). This project assesses the efficacy of using an evidence-based early
 stimulation program, combined with components to help parents cope with stress, delivered
 during six routine monthly clinic visits to parents of children with sickle cell disease. It
 is hoped that this innovation will improve parental psychological outcomes, as well as child
 developmental outcomes.
Children with sickle cell disease (SCD) are at risk of various complications, many of which
 arise suddenly and call on the problem solving skills of their parents. They are also at risk
 of neurocognitive delays; these may become evident during the pre-school years. Previous
 research by this group has demonstrated improved developmental outcomes after parental
 interventions incorporating play techniques in high risk and healthy pre-school children. The
 aim of the study is to determine usefulness in children with SCD of similar developmental
 interventions augmented by lessons in problem solving.

 The study is a randomized controlled trial. Parents of all infants with Hb SS (homozygous
 sickle cell disease) or Sβ0 -thalassemia disease identified by newborn screening during the
 initial year of the study will be invited to participate. They will be randomized to
 intervention or control. Parental stress, infant's development and hemoglobin levels will be
 measured at recruitment and again after six months. The intervention will occur during
 monthly Penadur (intramuscular Benzathine Penicillin) visits and will include supervised play
 with their children using an inexpensive toy and participation in solving a problem which may
 arise as they parent their child with SCD. At the end of the study, all control dyads will
 also be given the toys used in the intervention. All parents will be given the results of
 their children's developmental assessments and appropriate referrals made if deficits are
 identified.

 The study is minimal risk. Every effort will be made to maintain patient confidentiality.
 Respect for, and the maximum protection of the best interests of the research subjects will
 be maintained.
Inclusion Criteria:

 -  Infant has sickle cell disease: SS or Sβ0 thalassemia

 -  Attending Sickle Cell Unit, Jamaica for routine care

 Exclusion Criteria:

 -  None