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

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 a diverse group of 38 parents and employed inductive thematic analysis.

Results: Burnout was conceptualized encompassing three major themes including having a long-term and reoccurring nature, commencing with symptoms of stress progressing into exhaustion, and ending up 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 shows specific caregiving and parenting aspects such as the long-term responsibility over 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 professionals. Awareness of the various interpretations of the term may foster constructive communication between parents and professionals.

Innovation: Focusing on parents' individual experiences has illuminated new aspects of burnout. By purposively sampling a diverse group 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.