Sharing what we have learned from interviews with ICU survivors, and inviting you to help shape what comes next.
A note for colleagues
Thank you for your interest in this research. This update is for colleagues involved in the delivery of post-ICU outpatient services. Many of you have supported this work in one way or another, and your clinical perspective will be essential to what comes next.
It shares the headline findings from our recently published scoping review and our qualitative interview study with ICU survivors, and invites you to join us in co-designing a post-discharge nutrition intervention.
What the evidence tells us
The post-hospital discharge care gap
Our recent scoping review synthesised 43 studies involving 32,165 adult ICU survivors followed up to 12 months after hospital discharge. The findings confirmed what many colleagues see in practice: nutrition outcomes remain poor in the recovery year, and structured nutrition support during this period is the exception rather than the rule.
Barriers are multi-layered — appetite loss, dysphagia, taste changes, fatigue, psychological distress — and they persist. Body composition shifts toward increased fat mass with maintained or diminished lean mass, undermining physical rehabilitation. And despite this high risk, nutrition interventions were underused with inadequate referral systems following hospital discharge.
79%
experience appetite loss at 3 months
63%
prevalence of malnutrition at 3 months
37%
of studies reported dietitian involvement
Four themes from our qualitative interview study
In a complementary qualitative study, 16 ICU survivors — median 2.4 years since hospital discharge — shared how they experience and make sense of nutritional recovery following hospital discharge. Four themes emerged, each with direct implications for practice.
Eating in the shadow of critical illness
Eating was described as effortful, unpleasant, and emotionally charged — shaped by appetite loss, altered taste, fatigue, and for some, the trauma of ICU. Food became a coping mechanism, comfort, or trigger.
For practice: Consider adopting trauma-informed, person-centred approaches that address emotional, relational, and behavioural barriers to eating alongside physical symptoms.
Nutritional care that worked
Positive dietetic experiences were the exception. Where they occurred, they were defined by continuity across transitions and responsiveness to evolving needs. Family members also play a central role, but was often overlooked, leaving carers unsupported.
For practice: Early and sustained dietetic involvement, continuity across transitions, and the inclusion of carers appear particularly important.
Unmet nutritional needs
Survivors described abrupt loss of nutritional monitoring after hospital discharge, dietetic services that missed the mark, internal barriers to seeking help, and a broader undervaluing of nutrition within critical illness recovery pathways.
For practice: Easier ways to access dietetic care are needed to help overcome a mistrust of healthcare services and reluctance to engage with follow-up support.
What we wish we’d had
Survivors wanted early, flexible, hybrid dietetic support responsive to changing needs; involvement of family in discharge planning; and nutrition framed as central to recovery rather than peripheral.
For practice: Incorporate practical resources, and multiple access routes, including flexible hybrid and digital options capable of adapting to fluctuating readiness and capacity.
A novel conceptual finding: two recovery processes
Integrating narrative and thematic analysis revealed two broad nutritional recovery processes that survivors moved between over time.
1
Enabling recovery — marked by growing agency, psychological readiness, relational support, and access to responsive dietetic care.
2
Constraining recovery — shaped by psychological distress, identity disruption, persistent symptoms, a reluctance to seek help, and fragmented or absent care.
Help shape what comes next
We need clinician voices in the co-design
We will integrate evidence from the preceding scoping review and qualitative interview study into a programme theory for nutritional recovery after critical illness, and to use co-design to refine these and develop a deliverable, person-centred nutrition programme.
We are looking for clinicians who understand the realities of supporting recovery after discharge, to work alongside ICU survivors and carers in three online co-design workshops. Your clinical experience will help ensure the nutrition programme is realistic and workable.
We are particularly interested in hearing from nurse specialists, physicians, recovery coordinators, dietitians, psychologists, physiotherapists, and speech and language therapists working within post-ICU outpatient services.
June & July 2026
Microsoft Teams
3 workshops, 90 min each
6 clinician places
What your contribution will mean
Why your perspective matters
Help shape a practical and clinically relevant nutrition programme for recovery after critical illness
Contribute to improving support for patients and families recovering after hospital discharge
Use your experience to influence future research and care
A small group by design. We are keeping the workshops small so every contributor has meaningful space to speak. If more than six clinicians express interest, we will select to ensure a breadth of roles and settings across acute and community care.
Would you like to get involved?
Read the participant information sheet for the workshop details. If you would like to join — or would like to discuss whether this is right for you — please email Ella.
The scoping review has been published in Nutrition in Clinical Practice (Terblanche, Isa & Majid, 2025). DOI: 10.1002/ncp.70066
The qualitative interview study has been written up and is currently under review.
The qualitative findings will be presented at the Intensive Care Society State of the Art Congress in July 2026.
In February 2026, the findings were discussed at a London ICU patient support meeting, where survivors described how closely the themes resonated with their own recovery journeys — and once again highlighted the gaps in nutritional support after discharge.
If you have any questions about the research, the workshops, or how to get involved, I would be very happy to hear from you. Please email me at 240648@HSU.ac.uk.