Sleep and the atypically developing child – Q&A with Dr. Karen Spruyt

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Dr. Karen Spruyt is an International Visiting Research Scholar from the Department of Developmental Neuropsychology, at Vrije Universiteit Brussel (VUB), Belgium. She has been working closely with UBC’s Dr. Osman Ipsiroglu on research aimed at changing current clinical practices for atypically developing children– such as those with Autism Spectrum Disorders or Neurodevelopmental Disorders– to include attention to sleep problems, rather than focusing exclusively on daytime behaviours. Dr. Spruyt hosted a free public workshop on September 27 and 28, 2013, to gain expertise from clinicians, patients and caregivers on improving children’s clinical outcomes by addressing chronic sleep problems.

Up until now there has been a gap between scientists, clinicians and parents who work with atypically developing children. Why is there a need to bring these parties together to reshape the discussion around this issue?

Children with atypical development often need specialized care, which means involving several professionals with different backgrounds. Mostly the caregiver and child are aware of this professional network, or conversely unaware of the potentials of such a network.

In addition, the professional network itself might experience blind spots. As health care providers we are trained to understand, to diagnose and to treat daytime behaviour or complaints. However, pediatric sleep medicine is a growing discipline. From my perspective, daytime and nighttime behaviours form a continuum and as such our view on childhood development should be broadened.

Already during the early stages of my career I've attempted to link day and night throughout development. As a Peter Wall Institute for Advanced Studies International Visiting Research Scholar I have been allowed to interact with a broad range of professionals involved in the care of atypically developing children, yet with a keen interest to sleep. This has strengthened my understanding of where sleep behaviours fit within each of these professional’s own paradigms.

Why is it so crucial to give more attention to nighttime behaviours in atypically developing children?

It is one the top complaints of patients and caregivers. Yet, problematic sleep is often perceived as a sign or a symptom secondary to the child’s disorder, or as comorbidity. Studies have shown that a child’s sleep-wake pattern, sleep regularity and sleep behaviours are associated with overall well-being. Furthermore, when sleep is non-optimal their cognitive, emotional, behavioural, sensory-motor, social development and health will be affected.

How do you approach the challenge of developing a qualitative, patient reported framework for understanding the impact of sleep problems and medication on day and nighttime behaviours?

With support from the Institute we have been fortunate to work on several datasets. Namely, NeuroDevnet provided 59 interviews of caregivers facing challenges of children with fetal alcohol syndrome. In addition, my University of British Columbia hosts Dr. Osman Ipsiroglu and Dr. Sylvia Stockler have been willing to provide clinical data as well as research data, the latter focused on attaining treatment goals in children diagnosed with restless legs syndrome. Each of these datasets is being approached from a qualitative and quantitative analytical approach, which should allow us to express the impact of sleep problems and medication on these childrens’ development.

Can you tell us about your imploded cube visualization project?

You can visualize the conceptual cube as a dice with developmental domains on each side. A child will develop at their own rate in each of these areas. Therefore, the sides have subdivisions. The cube is further divided– or imploded– because we want the child, caregivers, professionals and others to share the same ground and understanding across these developmental domains. Each aspect within the health care of atypically developing children can be plotted within the cube. This should enable increased understanding by caregivers and health professionals of the importance and interconnectedness of the different childhood developmental areas.

How will researchers and clinicians eventually be able to make use of this framework?

The imploded cube should enhance understanding across those involved in the specialized care of atypically developing children. It is conceptualized as a Taxonomy of Transitioning – a way of classifying development and allowing alignment of night-wake objective across the different developmental domains and people involved in specialized child care. Objectives can potentially be formulated throughout a child’s diagnosis, treatment and even lifespan. Each researcher and clinician may perceive it as an over-arching framework, breaching their own discipline.

What are the larger implications of your research for chronic care management?

The strength of the imploded cube will depend on the criticism from within each discipline. Through those critics the implications of the model will crystallize and become clear. It is my hope that a child’s development is seen from all sides and from each perspective. In terms of chronic care, it hopefully will indicate strengths and weaknesses, or in other words optimize care for the developing individual.