Psychosocial experiences of clinicians providing care for children with severe neurological impairment

• Published in: Developmental medicine and child neurology
• Main Authors: Nevin, Suzanne M, Le Marne, Fleur A, Beavis, Erin, Macintosh, Rebecca, Palmer, Elizabeth E, Sachdev, Rani, Nunn, Kenneth, Bye, Ann
• Format: Journal Article
• Language: English
• Published: England 05.06.2024
• ISSN: 0012-1622; 1469-8749
• DOI: 10.1111/dmcn.15987

To investigate clinicians' psychosocial experiences navigating interdisciplinary care for children with severe neurological impairment (SNI), for example children with a developmental epileptic encephalopathy; secondarily, to identify preferences for future interventions to support clinicians caring for children with SNI. We conducted a qualitative descriptive study with interdisciplinary clinicians by using a purposeful sampling recruitment strategy. Twenty-four participants with expertise caring for children with SNI completed in-depth, semi-structured interviews. We transcribed the interviews, de-identified them, and performed inductive thematic analysis. Thematic analysis elicited interrelated themes. Clinicians experienced immense professional barriers providing patient-centred care across fragmented healthcare contexts. Physical, emotional, and psychological impacts were attributed to inadequate reflective practice training and a paucity of integrated resources to support clinicians over time. Multipronged strategies were prioritized by clinicians, incorporating psychoeducation, interdisciplinary peer mentorship, and psychological resources to build reflective practice skills for clinicians providing complex care in an advancing era of medicine. This study provides novel and in-depth insight into clinicians' experiences navigating care for children with SNI. The results will be used to inform future integrated and multipronged co-developed resources tailored for clinicians, on the basis of their recommendations.