Conceptualizing burnout from the perspective of parents of children with complex care needs

Nathalie Patty, Karen van Meeteren, Minke Verdonk, Marjolijn Ketelaar, Carlo Schuengel, Agnes Willemen

Research output: Contribution to JournalArticleAcademicpeer-review

Abstract

Objective
The purpose of this study was to investigate how parents of children with complex care needs conceptualize burnout from the perspective of parents themselves.
Methods
We conducted semi-structured interviews with 38 parents, selected for maximal variation in parental, child, and family characteristics. Inductive thematic analysis was employed.
Results
Burnout was conceptualized as encompassing three themes: having a reoccurring long-term nature, commencing with symptoms of stress progressing into exhaustion, and ending in a survival mode wherein parents worked hard to project an image of everything being well and under control (fighting) while distancing physically and emotionally from others and themselves (fleeing).
Conclusion
Burnout involves specific aspects of caregiving and parenting, such as long-term responsibility for the child, which cannot be relinquished. Furthermore, burnout may also be ‘hidden’: not always showing to the outside world, which requires extra attention and vigilance among parent's informal and formal networks. Awareness of the various interpretations of the term may foster constructive communication.
Innovation
Focusing on parents’ individual experiences has illuminated new aspects of burnout. By purposively sampling a variety of parents of children with complex care needs, a broader understanding of the meaning of the term ‘burnout’ from the perspective of parents was achieved.
Original languageEnglish
Article number100325
Pages (from-to)1-7
Number of pages7
JournalPEC Innovation
Volume5
Early online date17 Jul 2024
DOIs
Publication statusPublished - 15 Dec 2024

Funding

This work was supported by the Netherlands Organization for Health Research and Development [grant number 641001103 ] and Stichting Wetenschappelijk Onderzoek \u2018s Heeren Loo .

FundersFunder number
ZonMw
Stichting Wetenschappelijk Onderzoek
Netherlands Organization for Health Research and Development641001103

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