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A study protocol to develop and test an e-health intervention in follow-up service for intensive care survivors' relatives
Authors:Margo M. C. van Mol PhD  RN  Erwin J. O. Kompanje PhD  Jasper van Bommel PhD  MD  Jos M. Latour PhD  RN  the ICNaVEN-study group
Affiliation:1. Department of Intensive Care Adults, Erasmus MC University Medical Center, Rotterdam, The Netherlands;2. Departments of Intensive Care Adults and Ethics and Philosophy of Medicine, Erasmus MC University Medical Center, Rotterdam, The Netherlands;3. Faculty of Health, School of Nursing and Midwifery, University of Plymouth, Plymouth, UK;4. The ICNaVEN-study group are listed in Acknowledgements.
Abstract:

Background

The negative impact on long-term health-related outcomes among relatives of critically ill patients in the intensive care unit (ICU) has been well described. High-quality ICU specialized follow-up care, which is easily accessible with digital innovation and which is designed by and with relevant stakeholders (i.e., ICU patients' relatives and nurses), should be considered to reduce these impairments in the psychological and social domains.

Aim

The programme's aim is to develop and test an e-health intervention in a follow-up service to support ICU patients' relatives. Here, the protocol for the overall study programme will be described.

Study Design

The overall study comprises a mixed-methods, multicentre research design with qualitative and quantitative study parts. The study population is ICU patients' adult relatives and ICU nurses. The main outcomes are the experiences of these stakeholders with the newly developed e-health intervention. There will be no predefined selection based on age, gender, and level of education to maximize diversity throughout the study programme. After the participants provide informed consent, data will be gathered through focus groups (n = 5) among relatives and individual interviews (n = 20) among nurses exploring the needs and priorities of a digital follow-up service. The findings will be explored further for priority considerations among members of the patient/relative organization (aiming n = 150), which will serve as a basis for digital prototypes of the e-health intervention. Assessment of the intervention will be followed during an iterative process with investigator-developed questionnaires. Finally, symptoms of anxiety and depression will be measured with the 14-item Dutch version of the ‘Hospital Anxiety and Depression Scale’, and symptoms of posttraumatic stress will be measured with the 21-item Dutch version of the ‘Impact of Events Scale-Revised’ to indicate the effectiveness of digital support among ICU patients' relatives.

Relevance to Clinical Practice

The e-health intervention to be developed during this research programme can possibly bridge the gap in integrated ICU follow-up care by providing relevant information, self-monitoring and stimulating self-care among ICU patients' relatives.
Keywords:e-health  follow-up service  intensive care unit  nurses  post-intensive care syndrome – family
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