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Towards Understanding Behaviour and Emotions of Children with CLN3 Disease (Batten Disease): Patterns, Problems and Support for Child and Family

Author

Listed:
  • Aline K. Honingh

    (Faculty of Behavioural and Movement Science, Vrije Universiteit Amsterdam, 1081 BT Amsterdam, The Netherlands
    These authors contributed equally to this work.)

  • Yvonne L. Kruithof

    (Special Education Visually Impaired Children, Bartiméus, 3703 AJ Zeist, The Netherlands
    These authors contributed equally to this work.)

  • Willemijn F. E. Kuper

    (Department of Metabolic Diseases, Wilhelmina Children’s Hospital, University Medical Centre Utrecht, Utrecht University, 3508 AB Utrecht, The Netherlands)

  • Peter M. van Hasselt

    (Department of Metabolic Diseases, Wilhelmina Children’s Hospital, University Medical Centre Utrecht, Utrecht University, 3508 AB Utrecht, The Netherlands)

  • Paula S. Sterkenburg

    (Faculty of Behavioural and Movement Science, Vrije Universiteit Amsterdam, 1081 BT Amsterdam, The Netherlands
    Special Education Visually Impaired Children, Bartiméus, 3703 AJ Zeist, The Netherlands)

Abstract

The juvenile variant of Neuronal Ceroid Lipofuscinosis (CLN3 disease/Batten disease) is a rare progressive brain disease in children and young adults, characterized by vision loss, decline in cognitive and motor capacities and epilepsy. Children with CLN3 disease often show disturbed behaviour and emotions. The aim of this study is to gain a better understanding of the behaviour and emotions of children with CLN3 disease and to examine the support that the children and their parents are receiving. A combination of qualitative and quantitative analysis was used to analyse patient files and parent interviews. Using a framework analysis approach a codebook was developed, the sources were coded and the data were analysed. The analysis resulted in overviews of (1) typical behaviour and emotions of children as a consequence of CLN3 disease, (2) the support children with CLN3 disease receive, (3) the support parents of these children receive, and (4) the problems these parents face. For a few children their visual, physical or cognitive deterioration was found to lead to specific emotions and behaviour. The quantitative analysis showed that anxiety was reported for all children. The presented overviews on support contain tacit knowledge of health care professionals that has been made explicit by this study. The overviews may provide a lead to adaptable support-modules for children with CLN3 disease and their parents.

Suggested Citation

  • Aline K. Honingh & Yvonne L. Kruithof & Willemijn F. E. Kuper & Peter M. van Hasselt & Paula S. Sterkenburg, 2022. "Towards Understanding Behaviour and Emotions of Children with CLN3 Disease (Batten Disease): Patterns, Problems and Support for Child and Family," IJERPH, MDPI, vol. 19(10), pages 1-21, May.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:10:p:5895-:d:814235
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    References listed on IDEAS

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    1. Brehaut, J.C. & Kohen, D.E. & Garner, R.E. & Miller, A.R. & Lach, L.M. & Klassen, A.F. & Rosenbaum, P.L., 2009. "Health among caregivers of children with health problems: Findings from a Canadian population-based study," American Journal of Public Health, American Public Health Association, vol. 99(7), pages 1254-1262.
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