Connect, pause and reflect: Multidisciplinary clinicians' shared challenges and sustaining strategies caring for children with Severe Neurological Impairment

Abstract

Aim: Patients with Severe Neurological Impairment (SNI) have progressive conditions of the central nervous system, resulting in permanent cognitive and motor disabilities and enduring hypercomplexity. This study aimed to explore clinicians' shared psychosocial experience of caring for families of children with SNI, including the challenges, and components of care that bring clinicians meaning and purpose, to identify resource pathways to sustain clinicians.

Method: We purposively recruited multidisciplinary clinicians with expertise caring for patients with SNI to participate in a series of four sequential and semi-structured reflective practice workshops. We recorded workshops and performed a qualitative content analysis, following verbatim transcription.

Results: We conducted sixteen workshops with multidisciplinary clinicians including paediatricians (n = 14), paediatric neurologists (n = 5), allied health professionals (n = 3), clinical geneticists (n = 2), clinical nurse specialists (n = 2), a paediatric nephrologist (n = 1), a neurosurgeon (n = 1) and a metabolic specialist (n = 1). Workshops focused on three primary domains: 'the struggle', 'making a difference' and 'finding purpose and meaning'. Clinicians acknowledged psychosocial challenges and the limits to their medical expertise, emphasising the importance of ongoing reflective practice and proactive multidisciplinary collaboration to sustain themselves and empower patients. In the final workshop series, clinicians identified their preferences for multipronged, multimodal resources, centred on connection, reflection, and support.

Conclusion: This research provides in-depth insight into how multidisciplinary clinicians caring for patients with SNI cope with challenges and gain meaning and purpose in their role. Co-designed clinician interventions, coupled with integrated and structured reflective practice will address identified challenges and foster clinician meaning and purpose, in supporting their patients.