The Experiences of Family Members of Ventilated COVID-19 Patients in the Intensive Care Unit: A Qualitative Study

Background: Visitor restrictions caused challenges for family members when their loved ones had coronavirus disease (COVID-19) and were ventilated. Limited studies have reported on family members’ experiences and support needs. Aim: To explore the experiences and support needs of family members of ventilated COVID-19 patients in the intensive care unit (ICU). Design: Exploratory, qualitative design, using in-depth individual telephone interviews, and analyzed using thematic analysis. Setting/Participants: Ten family members of adult COVID-19 patients in the ICU. Result: Seven key themes represented family members’ experiences: (a) reactions to the COVID-19 diagnosis, (b) COVID-19 as a destabilizing force on the family unit, (c) COVID-19’s effects on bereavement outcomes, (d) desperately seeking information, (e) family member needs, (f) conflicting feelings about video calls, and (g) appreciation of care. Family members’ feelings about the patient’s diagnosis and how the virus was contracted exacerbated their stress and anxiety. They struggled to feel informed about care that they could not witness and had difficulty understanding information. Family members reported that video calls were unhelpful. While these experiences made them question the quality of care, they expressed their appreciation of the frontline healthcare providers taking care of their loved ones. Conclusion: The stress and uncertainty of family members of critically ill patients with COVID-19 were influenced by their inability to feel connected to the patient and informed about care. Healthcare providers should assess each individual family’s burden and preferences, and this should include establishing structured, timely, and consistent communication regarding patient care during the pandemic including early referral to palliative care.

[1]  S. Abate,et al.  Rate of Intensive Care Unit admission and outcomes among patients with coronavirus: A systematic review and Meta-analysis , 2020, PloS one.

[2]  A. Schwartz,et al.  Goals of care and COVID-19: A GOOD framework for dealing with uncertainty , 2020, Palliative and Supportive Care.

[3]  Emily A. Kuhl,et al.  COVID-related family separation and trauma in the intensive care unit. , 2020, Psychological trauma : theory, research, practice and policy.

[4]  G. Lamiani,et al.  Promoting resilience in the acute phase of the COVID-19 pandemic: Psychological interventions for intensive care unit (ICU) clinicians and family members. , 2020, Psychological trauma : theory, research, practice and policy.

[5]  M. Patterson,et al.  The Role of Palliative Care in Caring for the Families of Patients With COVID-19 , 2020, The American journal of hospice & palliative care.

[6]  Prakash Fernandes,et al.  Palliative Care Interventions from a Social Work Perspective and the Challenges Faced by Patients and Caregivers during COVID-19 , 2020, Indian journal of palliative care.

[7]  A. Zangrillo,et al.  Introducing the Video call to facilitate the communication between health care providers and families of patients in the intensive care unit during COVID-19 pandemia , 2020, Intensive and Critical Care Nursing.

[8]  Kathleen M. Akgün,et al.  Communication strategies to mitigate fear and suffering among COVID-19 patients isolated in the ICU and their families , 2020, Heart & Lung.

[9]  K. Courtright,et al.  Family-Centered Care During the COVID-19 Era , 2020, Journal of Pain and Symptom Management.

[10]  I. Higginson,et al.  Characteristics, Symptom Management, and Outcomes of 101 Patients With COVID-19 Referred for Hospital Palliative Care , 2020, Journal of Pain and Symptom Management.

[11]  M. Meeker,et al.  Family Outcomes and Perceptions of End-of-Life Care in the Intensive Care Unit: A Mixed-Methods Review , 2020, Journal of palliative care.

[12]  G. Naglie,et al.  Towards a universal model of family centered care: a scoping review , 2019, BMC Health Services Research.

[13]  U. Janssens,et al.  [Communicating with families in the ICU : Background and practical recommendations]. , 2018, Medizinische Klinik, Intensivmedizin und Notfallmedizin.

[14]  M. Sheelagh T. Carpendale,et al.  Analyzing Qualitative Data , 2017, ISS.

[15]  A. Lord,et al.  Post-traumatic Stress Disorder and Complicated Grief are Common in Caregivers of Neuro-ICU Patients , 2017, Neurocritical Care.

[16]  J. Verne,et al.  Mismatch between physicians and family members views on communications about patients with chronic incurable diseases receiving care in critical and intensive care settings in Georgia: a quantitative observational survey , 2016, BMC Palliative Care.

[17]  L. Vloet,et al.  Exploring family experiences of nursing aspects of end-of-life care in the ICU: A qualitative study. , 2016, Intensive & critical care nursing.

[18]  M. Meeker,et al.  Family Meetings at End of Life: A Systematic Review , 2015 .

[19]  S. Donnelly,et al.  Relatives' and staff's experience of patients dying in ICU. , 2015, QJM : monthly journal of the Association of Physicians.

[20]  J. Davidson,et al.  Multidisciplinary Team Training to Enhance Family Communication in the ICU* , 2014, Critical care medicine.

[21]  Karen M Gutierrez.  Prognostic categories and timing of negative prognostic communication from critical care physicians to family members at end-of-life in an intensive care unit. , 2013, Nursing inquiry.

[22]  D. Kautz,et al.  When the Patient and Family Just Do Not Get It: Overcoming Low Health Literacy in Critical Care , 2012, Dimensions of critical care nursing : DCCN.