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Major-Helsloot M1,2, Van Nes F3, Ramaekers S3, Engelbert R3, Van der Schaaf M2,3
1Amsterdam University of Applied Sciences, European School of Physiotherapy, Amsterdam, Netherlands, 2University of Amsterdam, Amsterdam UMC, Department of Rehabilitation, Amsterdam Movement Sciences, Amsterdam, Netherlands, 3Amsterdam University of Applied Sciences, Achieve Centre of Applied Research, Faculty of Health, Amsterdam, Netherlands
Background: In the Netherlands, it is estimated that yearly approximately 25,000 patients who survive critical illness and prolonged admission to an intensive care unit (ICU), develop post-intensive care syndrome (PICS). PICS presents itself as a cluster of long-term physical, mental and cognitive complaints, as defined by the Society of Critical Care Medicine in 2012. Many patients leave the hospital via a department not primarily specialized in the complexity of PICS and it is hypothesized that in the transition phase from ICU to ward valuable information gets lost. Consequently, health care needs of patient and family might no be adequately mapped at time of hospital discharge.
Purpose: To explore the needs, experiences, impeding and helping factors of patients and their relatives around hospital discharge in relation to their rehabilitation process.
Methods: Dutch ICU survivors and their relatives were recruited through purposeful sampling. Data were collected via semi-structured interviews, transcribed verbatim, coded and analyzed through an iterative process, using constant comparison methods based on constructive grounded theory. Data saturation determined the end of the data collection phase. Data were analyzed using MAXQDA 12 and themes related to the rehabilitation process as perceived by patients and relatives were identified.
Results: 22 patients who survived an ICU admission and 13 family members were included in this study. Patients had been admitted to 19 different general and academic hospitals throughout the Netherlands and had a median ICU-stay of 14 days (IQR 9.75-24.50). The average age was 53 (SD ± 11.2) and 60% was female. The following 4 themes were identified: existing in a fragmented reality, falling through the cracks, unmet needs, and being sidelined.
Success factors for rehabilitation and self-perceived health after hospital discharge were: empowerment, empathetic professionals with expertise in post-ICU issues, active involvement of relatives and expectation management. Experienced barriers to recovery after hospital discharge were: a distorted sense of reality as experienced by the patient, not experiencing any control, unmet and improperly mapped needs and the lack of a (medical) safety net.
Conclusion(s): This study highlights the gap between what ICU survivors and their relatives need during and after hospital discharge and the actual received care. Identified barriers and success factors highlight the importance of a holistic assessment of patients´ and family needs at hospital discharge, in order to identify patient relevant goals and design rehabilitation interventions which will aid in improvement in all dimensions of health.
Implications: Current hospital discharge protocols cater insufficiently for the complex needs of critical illness survivors and their family members in the transition to the home situation. A holistic assessment of their needs, taking barriers and facilitators - as identified in this study - into consideration can smoothen the transition and kick-start rehabilitation.
Keywords: ICU survivors, Hospital discharge, Rehabilitation needs
Funding acknowledgements: Mel Major´s PhD research is funded by the Netherlands Organisation for Scientific Reseach(NW))
Purpose: To explore the needs, experiences, impeding and helping factors of patients and their relatives around hospital discharge in relation to their rehabilitation process.
Methods: Dutch ICU survivors and their relatives were recruited through purposeful sampling. Data were collected via semi-structured interviews, transcribed verbatim, coded and analyzed through an iterative process, using constant comparison methods based on constructive grounded theory. Data saturation determined the end of the data collection phase. Data were analyzed using MAXQDA 12 and themes related to the rehabilitation process as perceived by patients and relatives were identified.
Results: 22 patients who survived an ICU admission and 13 family members were included in this study. Patients had been admitted to 19 different general and academic hospitals throughout the Netherlands and had a median ICU-stay of 14 days (IQR 9.75-24.50). The average age was 53 (SD ± 11.2) and 60% was female. The following 4 themes were identified: existing in a fragmented reality, falling through the cracks, unmet needs, and being sidelined.
Success factors for rehabilitation and self-perceived health after hospital discharge were: empowerment, empathetic professionals with expertise in post-ICU issues, active involvement of relatives and expectation management. Experienced barriers to recovery after hospital discharge were: a distorted sense of reality as experienced by the patient, not experiencing any control, unmet and improperly mapped needs and the lack of a (medical) safety net.
Conclusion(s): This study highlights the gap between what ICU survivors and their relatives need during and after hospital discharge and the actual received care. Identified barriers and success factors highlight the importance of a holistic assessment of patients´ and family needs at hospital discharge, in order to identify patient relevant goals and design rehabilitation interventions which will aid in improvement in all dimensions of health.
Implications: Current hospital discharge protocols cater insufficiently for the complex needs of critical illness survivors and their family members in the transition to the home situation. A holistic assessment of their needs, taking barriers and facilitators - as identified in this study - into consideration can smoothen the transition and kick-start rehabilitation.
Keywords: ICU survivors, Hospital discharge, Rehabilitation needs
Funding acknowledgements: Mel Major´s PhD research is funded by the Netherlands Organisation for Scientific Reseach(NW))
Topic: Critical care; Professional issues; Primary health care
Ethics approval required: No
Institution: Amsterdam UMC, University of Amsterdam
Ethics committee: Medical Ethical Research Committe
Reason not required: No intervention was imposed on the subjects and the interview topics were not likely to impact the participants psychologically
All authors, affiliations and abstracts have been published as submitted.
