JMIR Publications

ABSTRACT

Background:

There is a high prevalence of short- and long-term symptoms such as fatigue, anxiety, depression, symptoms of post-traumatic stress and complicated grief among family caregivers of critically ill patients. These adverse symptoms following an admission to an Intensive Care Unit (ICU) is also known as Post Intensive Care Syndrome Family (PICS-F). The Family-Centered Care approach provides recommendations for how to improve the care of patients and families, but models for family caregiver follow-up are often lacking, and needed.

Objective:

This study aimed to develop a model for structuring and individualizing the follow-up of family caregivers of critically ill patients from patient ICU admission to post discharge or death.

Methods:

The study employed a two-phased iterative process with a participatory co-design approach. First, the Preparation phase included a meeting with stakeholders (n=4) for organizational anchoring and planning, a literature search and interviews with former family caregivers (n=8). In the subsequent Development phase the model was iteratively created through workshops with stakeholders (n=10) and user testing by former family caregivers (n=4) and experienced ICU nurses (n=11).

Results:

Interviews revealed how being present with the patient and receiving adequate information and emotional care were highly important for family caregivers at the ICU. The literature search underlined the overwhelming and uncertain situation for the family caregivers and identified recommendations for follow-up. Based on these recommendations and findings from interviews, workshops and user-testing, The Caregiver Pathway model was developed, encompassing 4 steps: 1) mapping of caregivers’ needs and challenges using a digital assessment tool, followed by a conversation with an ICU nurse, 2) a card containing useful information and support, 3) a discharge conversation shortly after discharge, and 4) a follow-up conversation after the hospital stay.

Conclusions:

This study illustrates how existing evidence and stakeholder input can be combined to create a model for family caregiver follow-up at an ICU. The Caregiver Pathway can help ICU nurses to improve family caregiver follow-up and aid in promoting Family-Centered Care, potentially also being transferrable to other types of caregiver follow-up. Clinical Trial: Clinicaltrials.gov: NTC04839406; https://clinicaltrials.gov/ct2/show/NCT04839406