Feasibility of a mental health informed physical activity intervention for the carers of children with developmental and epileptic encephalopathy

Epilepsy Behav. 2021 Aug;121(Pt A):108022. doi: 10.1016/j.yebeh.2021.108022. Epub 2021 May 18.

Abstract

Aim: Parents and carers of children with developmental and epileptic encephalopathies (DEEs) experience high rates of mental health disorders including depression and posttraumatic stress disorder. Physical activity is an evidence-based strategy which may help to improve the wellbeing of this population.

Method: We delivered a 4-week physical activity group program via a private Facebook group for carers of children with DEEs and their nominated support person. The facilitators provided education and motivation on different weekly topics (e.g. goal setting, overcoming barriers to exercise) and encouraged social support between participants. All participants were provided with a physical activity tracker (Fitbit). The primary outcome was feasibility and secondary outcomes included psychological distress, quality of life, physical activity levels, and PTSD symptoms.

Results: N=20 (parents and support partners) were recruited. All participants remained in the program for the full duration and 85% completed the post assessment questionnaires. High acceptability was observed in the qualitative interviews and exploratory analysis of pre-post outcomes found significant improvements in psychological distress and quality of life (ps < 0.01), while changes in physical activity levels and PTSD symptoms were non-significant.

Conclusion: A mental health informed physical activity program delivered via Facebook is feasible for carers of children with DEEs and may help improve wellbeing.

Keywords: Carers; Developmental and epileptic encephalopathy; Genetic epilepsy; Mental health; Parents; Physical activity.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Brain Diseases*
  • Caregivers*
  • Child
  • Exercise
  • Feasibility Studies
  • Humans
  • Mental Health
  • Quality of Life