Introduction Many investigations into the pandemic focus on weaknesses in processes and decision making and the factual consequences of these. Too often the voices of bereaved families are omitted.
Aims To investigate the lived experiences of families bereaved by Covid-19.
Method In-depth narratives of 28 people’s experiences of losing 30 relatives were collected. Using manual reflexive thematic analysis, core and sub-themes were identified from the transcriptions.
Results Experiences toward end of life were arduous to say the least. Difficulties endured in attaining information from hospitals and care homes. An inability to be with their family member added to the stress of dealing with imminent death. Some felt ‘lucky’ to spend the last few hours with their loved ones. Some endured saying goodbye via electronic devices. Others, due to the rapid deterioration of some COVID-19 patients, restrictions on visiting, and a patient’s inability to use electronic devices, did not get to say goodbye.
Conclusion Being denied access to their loved ones at end of life emerged as one of the most distressing elements in people’s narratives. Digital and electronic means of enabling families to communicate were better than nothing. However, often these were unavailable or staff were too busy to help patients unable to use technology unaided. Testimonies illustrate consequential feelings of guilt and helplessness very powerfully. Many participants shared feelings typical of complicated grief, and found that adequate specialist support services are in short supply.
Impact The frequency of pandemics is increasing, hence pandemic planning needs to be central to all providers of end of life care. An important part of these plans should be the enhancement of communication channels, particularly digital channels, in order to mitigate at least some of the devastating communications barriers uncovered in this research.
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