Evaluating Health Visitors' Existing Knowledge of Down Syndrome and the Effect of a Training Workshop

Silvana E Mengoni,Sandra Redman

doi:10.1111/jppi.12271

Abstract

AbstractChildren with Down syndrome are at an increased risk of health and development issues in early childhood, therefore monitoring their development and identifying health conditions as early as possible is critical. Health professionals may not always have the training and knowledge to effectively support families of children with disabilities, including Down syndrome. In the UK, health visitors conduct health and development reviews for children under 5 years, therefore they have a key role to play in monitoring and identifying health issues in young children with Down syndrome. However there has been no research on health visitors' knowledge and training needs regarding Down syndrome. This study aimed to assess health visitors' existing knowledge of Down syndrome and evaluate a pilot Down syndrome training session for health visitors. Twenty‐six health visitors from two NHS Trusts in England participated in 1 of 5 group training workshops. Pretraining and posttraining questionnaires assessed knowledge about Down syndrome, and feedback on the training session. Knowledge about Down syndrome was low prior to the training and increased significantly following the training session. Health visitors rated the training workshop very highly and would recommend it to a colleague. Health visitors identified a need for training to enable them to increase their knowledge about Down syndrome and better support families. In summary, a pilot training session about Down syndrome received positive feedback from health visitors, and led to improvements in knowledge and understanding about Down syndrome. This has the potential to improve health outcomes for children with Down syndrome.

Highlights

Down syndrome is the most common genetic cause of intellectual disability, typically caused by the presence of an extra chromosome 21
Children with Down syndrome are at an increased risk for health and development issues in the early years
Health visitors are in a unique position within health services and may have the opportunity to identify developmental issues that could otherwise go unnoticed

Summary

Introduction

Down syndrome is the most common genetic cause of intellectual disability, typically caused by the presence of an extra chromosome 21. Common health problems for babies and children with Down syndrome include heart defects, respiratory conditions, bowel conditions, musculoskeletal problems, hearing problems, visual impairments, and allergies (Cleves et al, 2007; Frid, Annerén, Rasmussen, Sundelin, & Drott, 2002; McGrath, Stransky, Cooley, & Moeschler, 2011; Schieve et al, 2009; Thomas et al, 2011). The impact of such health issues on health services utilisation is high, for example, Schieve et al (2009) found that over 25% of children with Down syndrome needed help with personal care, took regular medication, had recently seen a medical specialist and had received therapy. A mark scheme was produced prior to administering the questionnaire, and all questionnaires were double-marked with any disagreements arbitrated by a third marker

Methods

Results

Discussion

Conclusion