Staff Perspectives of Working with Families of Children and Young People in Paediatric Residential Neurorehabilitation

Abstract

Background In the UK, paediatric neurorehabilitation services are encouraged to develop a collaborative working relationship with families. This relationship supports effective assessments, rehabilitation and the development of shared goals, interventions and evaluations. It also supports the transition of life after rehabilitation. Children and young people with the most severe acquired brain injuries participate in intensive residential neurorehabilitation. Given the momentum to empower and integrate families, and the challenging context in which relationships between healthcare professionals and families takes place, data is sparse and disparate around this relational experience. This study looked to understand what it is like for healthcare professionals to work with families of children and young people in a residential paediatric neurorehabilitation service and what enables or hinders collaboration. Method 15 participants who work at a residential paediatric neurorehabilitation service in the UK were interviewed. Participants were made up of members of the nursing team, psychosocial team, therapies team and assistive technologies team. Results Interviews were transcribed and analysed using thematic analysis. Five key themes and 13 subthemes were identified, including intentions and hopes, assessment and understanding, what healthcare professionals do and what factors contribute to when things get stuck. Conclusion The study suggests that the working relationship with families is important in order to create meaningful interventions and prepare families to life beyond the service. Healthcare professionals attune to each family in order to join and create as good as working relationships as possible given very challenging contexts of grief, upheaval and stress. There are however a number of barriers to developing collaborative relationships. This study puts forward a psychological stance to understand the experiences, barriers and enablers to collaborative relationships

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