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

Abstract

The clinical care for children with severe neurological impairment (SNI) has undergone major advances, and services have adapted with the promise of many potential new treatments on the horizon. Children with SNI are living longer and patients with complex needs have outpaced the number of clinicians trained to adequately provide care.

This growing gap and the limited supports places added pressure on clinicians. They struggle with uncertainty and feel ill-equipped to provide appropriate management and counselling for children with rare and complex SNI.

This research study asked clinicians about their experiences caring for children with SNI. We also asked clinicians what could be developed to better support them in their role.

We conducted 24 interviews with clinicians. We asked clinicians to tell us about their experiences caring for children with SNI and how their experiences impacted their mental, physical, and social–emotional wellbeing over time.

Clinicians described a combination of physical, emotional, and mental health impacts. Stressors were related to inadequate training and support for patients with SNI. This often caused clinicians to experience isolation, anxiety, and self-doubt and a sense of powerlessness. Many clinicians were able to make use of strategies to help them cope with complex challenges including creating meaningful connections with families and their clinical teams. Learning to approach scenarios with greater acceptance of the limitations of their medical knowledge and capacity to change the situation was associated with increased clinician wellbeing.