Join Luke's Legacy Family Research Rounds to talk about post-traumatic stress in parents of children with neurodevelopmental conditions, featuring Dr. Elisa Kaltenbach and Ms. Donna Thomson from the Life Beyond Trauma team. 

Dr. Elisa Kaltenbach is a Trauma Therapist and Postdoctoral Research Fellow at the IWK Health Centre (Halifax). She is also the co-principal investigator of the Life Beyond Trauma Program, a research project dedicated to developing an online intervention for parents who have experienced trauma in the care of their neurodiverse children.

Ms. Donna Thomson is a parent, writer, activist, as well as co-developer and co-instructor of the Family Engagement in Research Course at CanChild, McMaster University. 

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Epilepsy in young people often co-occurs with mental health conditions such as depression and anxiety. However, variables and pathways to support mental health in childhood epilepsy are still unexplored. This study showed that self-esteem mediated the mental health impact of peer support and clinical seizure burden in young people with epilepsy. Moreover, evidence suggests that interventions focusing on self-esteem can mitigate the negative effects of low peer support or resistant epilepsy on self-reported mental health outcomes. Future research should evaluate the contributors of self-esteem and empirically test whether interventions lead to a decreased report of mental health symptoms. Authors: Cahill PT, Ferro MA, Campbell WN, Ronen GM. Epilepsia. 2021 Jul 18. doi: 10.1111/epi.17006.

Picture My Participation (PMP) is a self-reported instrument designed to capture the attendance and involvement of children and youth with intellectual disabilities in everyday situations, particularly in low- and middle-income settings. The items in PMP were selected by reviewing CanChild’s Participation and Environment Measure for Children and Youth (PEM-CY), among other existing participation measures. This study identified possible subcomponents in the attendance scale and examined the internal consistency of scores to explore the structural validity of PMP. Children with varying levels of intellectual disability across different cultural settings were able to complete the PMP and report their participation attendance, suggesting that PMP can be a useful tool to understand and target participation outcomes. Authors: Arvidsson P, Dada S, Granlund M, Imms C, Shi LJ, Kang LJ, Hwang AW, Huus K. Afr J Disabil. 2021 May 28;10:763. doi: 10.4102/ajod.v10i0.763.

This paper describes the knowledge translation actions of Nossa Casa Institute in Brazil, a non-profit organization aiming to promote cerebral palsy (CP) awareness and empower families by providing reliable information. The researchers shared their experience in planning and conducting an online workshop to foster principles of family-centred service. They also developed activities including social media posts and live interactions, multidisciplinary conferences, educational courses, and research project contributions. The activities are grounded on evidence-based information using plain, accessible, and friendly language. The researchers used the action cycle from the Knowledge to Action Framework to describe the activities proposed in the workshop development and implementation and to plan future actions. Authors: Airoldi MJ, Vieira BS, Teplicky R, Chalfun D, Bonfim RGAS, Mancini MC, Rosenbaum P, Brandão MB. Front. Rehabilit. Sci. 2:709983. 2021 June 28. doi: 10.3389/fresc.2021.709983.