Many pre-school children with sickle cell disease (SCD) have cognitive deficits¹.  In addition, anaemia and parental inability to cope with the stress of having a child with chronic disease may contribute to poor child development. In Jamaica, neurocognitive deficits in children with SCD are diagnosed late and there is often inadequate remediation. Currently, developmental assessments are not routinely available or performed to help identified neurocognitive or educational delays. Further, parenting classes associated with having a child with chronic disease are unavailable. Integration of an intervention into usual care with little additional cost can have a significant impact on maximizing the potential of children given their disease severity.

The study team previously demonstrated the benefit to child development of an intervention improving mother-child interaction through play². This intervention focused on at-risk groups and was delivered during home visits by clinic health workers. The current study assesses a similar intervention for families of children with SCD, with an additional component to enhance their problem-solving skills, decreasing parental stress. The program will be delivered during six routine monthly clinic visits and will be assessed in terms of its efficacy in improving parental psychological outcomes and child developmental outcomes.

• 70 dyads (parent-child) will be enrolled in the study, of which 35 will receive the intervention during the study.
• We anticipate that 80% of intervention participants will demonstrate significant improvement in outcomes such as cognitive development.
• 6 nurses and 6 physicians will be trained in the use of the intervention.

Funders

• Grand Challenges Canada

• Integration into routine care
• Children with SCD are already brought by parents to clinic monthly to receive penicillin prophylaxis
• Experienced Staff and Research Team
• Existing staff are very experienced, having 5 to 22 years of experience working with children with sickle cell disease and their parents. The Child Development Research Group has extensive experience in delivery of the stimulation aspect of the intervention, having just concluded a study using the same methodology.

Challenges

Travelling to and from the Clinic

Enrolled dyads are required to travel to the clinic from various parts of the country which is quite challenging due to costs, inconvenience and availability (as in many developing countries).

Infant development and parental stress, coping, anxiety and depression will be assessed on enrollment when the infants are 6 – 9 months and repeated again at 12-15 months of age.

Assessments include the following:

• Child: Children’s development will be assessed, specifically in the areas of gross motor, language, fine motor and cognition.
• Mother: Parental stress will be measured using the disease specific ‘Pediatric inventory for parents’ (PIP), and coping will be assessed using the Coping Health Inventory for Parents (CHIP). The PIP and CHIP will be piloted before use. Problem solving abilities will be assessed using the Social Problem Solving Inventory-revised (SPSI-R).
• A general questionnaire will be developed to obtain socio-demographic information on the family. Medical history including haemoglobin levels for the infants will be obtained from patient charts.

The expected impact of the intervention is improved developmental status of children with SCD in the intervention group, and improved perception of mother regarding her ability to deal with parenting of her child with SCD as evidenced by fewer symptoms of stress, anxiety and depression and improved ability to make plans when confronted by a problem.

1. Schatz, J. et al (2002) Cognitive functioning in children with sickle cell disease: a meta-analysis. Journal of Pediatric Psychology. 2002 Dec;27(8):739-48.
2. Powell C, et al. (2004) Feasibility of integrating early stimulationinto primary care for undernourished Jamaican children: cluster randomised controlled trial. BMJ. 2004 Jul 10;329:89.