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Relatives' Involvement in the Care Pathway of Patients With Acquired Brain Injury or Malignant Brain Tumour: An
Rikke Guldager1,2, Emilie Gyldenöhr1, Ingrid Poulsen2,3
1Department of Neurosurgery, The Neuroscience Centre, Copenhagen University Hospital - Rigshospitalet, Copenhagen, Denmark.
Aim:
To explore how nurses involve the relatives of patients with acquired brain injury or malignant brain tumour and how this involvement unfolds in hospital ward settings. We focus on the contextual, interpersonal, and communicative dynamics that shape and mediate involvement.
Design:
A qualitative, exploratory design using nonparticipant field observation.
Methods:
Nineteen nonparticipant observations were conducted across seven units in four Danish hospital sites, covering the full clinical pathway from acute care to inpatient rehabilitation. Data were analysed using inductive content analysis following Graneheim and Lundman approach.
Results:
The analysis identified one overarching theme and three categories that illuminate how relative involvement is shaped in clinical practice. Relatives' opportunities to be involved in the patient's treatment and care were strongly influenced by the physical and organizational context, including the spatial layout of wards and the timing of clinical routines. Communicative practices ranged from one-way information delivery to inclusive dialogues, affecting whether relatives were acknowledged and involved. The way nurses recognized relatives relationally, either as passive bystanders or as knowledgeable contributors, further shaped their role. Across all categories, a continuum of involvement emerged, ranging from complete absence to active partnership, reflecting how structural and interpersonal factors interact to enable or hinder meaningful engagement.
Conclusion:
Relative involvement is not consistently embedded in everyday clinical routines but varies depending on context, professional practice, and communicative approach. Involvement often depends on relatives taking initiative and is rarely proactively facilitated by nurses. However, when nurses are able to create structured, inclusive environments, relatives shift from peripheral observers to valued partners in care.
Impact:
This study contributes important observational knowledge to the field of family involvement in acute and complex care settings. The findings highlight the need for structured, context-sensitive strategies that enable nurses to identify and support diverse forms of relative involvement. Such efforts are vital to ensure equitable engagement across different clinical settings and family constellations.
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