PIRe 2.0: A Stepped-Care Model for Involving Relatives Across Sectors

Relatives of people with acquired brain injury (ABI) or malignant brain tumor (MBT, World Health Organization grade 3-4) play a central role in supporting patients throughout complex neurological care pathways. Both patient groups are characterized by multifaceted disease trajectories and substantial needs for coordination and support within the healthcare system. These demands are often associated with high caregiver burden among relatives. While ABI trajectories typically involve prolonged rehabilitation and long-term functional impairments, MBT is more often characterized by an acute, progressive, and life-threatening course. Despite these differences, relatives across both groups face considerable emotional, practical, and organizational challenges.

Even within well-developed healthcare systems, relatives continue to perform a large share of care and coordination tasks and frequently assume an informal caregiver role without sufficient professional support or clear coordination across sectors. This role is associated with increased risk of emotional distress, frustration, and reduced mental well-being. Although policies and guidelines recommend greater involvement of relatives, systematic and structured approaches to supporting relatives in clinical practice remain limited.

Transitions between hospital care and community-based rehabilitation represent a particularly vulnerable phase. Insufficient communication and lack of continuity across sectors are well-documented sources of burden for relatives. Studies show that breakdowns in communication during transitions increase the risk of uncertainty, misunderstandings, and experiences of exclusion. Relatives often describe acting as informal coordinators and intermediaries between healthcare sectors, a role that may substantially increase both practical and emotional strain, especially when expectations and responsibilities are unclear.

To address these challenges, the PIRe intervention was developed as a nurse-led, multicomponent approach aimed at strengthening early and meaningful involvement of relatives. The intervention combines structured conversations with relatives, diagnosis-specific information delivered in an accessible format (including digital access), and a peer-developed checklist to support navigation of the care pathway. Findings from a prior feasibility study demonstrated substantial variation in relatives' needs over time. Many relatives in the acute phase had limited capacity for intensive support, while the need for more targeted and sustained support often increased later in the disease trajectory. These findings highlighted the need for a systematic yet flexible organizational framework that can tailor support over time and ensure continuity across hospital and community settings.

A stepped-care approach provides an evidence-based framework for structuring support and involvement of relatives with the possibility of gradual escalation and de-escalation across sectors. PIRe 2.0 represents the next step as a real-world effectiveness and implementation study in which the PIRe intervention is delivered and evaluated as a scalable stepped-care model for systematic involvement of relatives in complex neurological care pathways.