Co-Producing Personalised Discharge Planning: Developing a Toolkit to Improve Caregiver Involvement in Hospital Transitions

Kathryn McEwan*, Tom Sanders, Susan Carr, Peter Van der Graaf, Susan Jones, Maria Raisa Jessica Aquino, Mitchell James Hogg, Rakhshanda Hameed, Frank Lai, Christina Cooper, Sebastian Potthoff

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

Background
Informal caregivers are often expected to support patients transitioning from hospital to home and yet are routinely overlooked in discharge planning. This gap can leave caregivers unprepared and unsupported, contributing to avoidable complications and distress. In response, we co-designed a personalised discharge planning toolkit to support meaningful conversations between hospital staff and informal caregivers.

Methods
Using a participatory action research approach, we conducted four co-design workshops with 22 stakeholders, including informal caregivers, healthcare professionals and voluntary sector representatives. Workshops and analysis were guided by Normalisation Process Theory, the Implementation STakeholder Engagement Model (I-STEM) and Meleis' Transitions Theory. Data were analysed using reflexive thematic analysis and collaborative synthesis.

Findings
Stakeholders identified a shared need for a simple, conversation-based tool that would help caregivers articulate their needs, receive timely information and build confidence in their role. The resulting toolkit comprises five co-produced tools underpinned by a set of key principles, ranging from early admission resources to post-discharge supports, all designed to support personalised, caregiver-inclusive discharge planning. Participants emphasised the importance of respectful dialogue, a named point of contact, and clarity about post-discharge support. Yet, variation in local infrastructure and workforce capacity remain barriers to implementation.

Conclusion
A personalised discharge toolkit co-designed with caregivers and professionals can strengthen transitional care and promote caregiver preparedness. Embedding this prototype into routine hospital practice will require organisational support, digital readiness and sustained attention to equity and inclusion.

Patient or Public Contribution
This study was co-produced through a participatory action research (PAR) approach involving individuals with lived experience of caregiving, alongside health and social care professionals and voluntary sector representatives. Informal caregivers actively shaped the design, delivery and iterative development of the personalised discharge planning toolkit across four co-design workshops. Their insights informed key themes including recognition of caregiver identity, communication challenges and post-discharge support needs. Caregivers contributed to analysis and interpretation of findings through discussion, feedback and validation during and after workshops, ensuring the toolkit was grounded in real-world experiences and addressed the complexities of caregiving transitions.
Original languageEnglish
Article numbere70483
Number of pages13
JournalHealth Expectations : an International Journal of Public Participation in Health Care and Health Policy
Volume28
Issue number6
Early online date5 Nov 2025
DOIs
Publication statusPublished - 1 Dec 2025

Keywords

  • caregivers
  • discharge
  • transitional care
  • person centred care
  • personalised care
  • implementation theory
  • Normalisation Process Theory

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