Rosemary Hughes

Bio: Rosemary Hughes is an academic researcher from University of Liverpool. The author has contributed to research in topics: Palliative care & Pandemic. The author has an hindex of 3, co-authored 3 publications receiving 38 citations. Previous affiliations of Rosemary Hughes include University of Sheffield.

A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic.

Abstract: Background:Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely ...

Health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic: A qualitative study.

Abstract: Background:Health and social care professionals’ ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic.Aim:To explore ...

Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives' experiences during the COVID-19 pandemic

Abstract: Background:COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families.Aim:To explore bereaved relatives’ experiences of quality of care and...

Live well, die well – an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study

Abstract: Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying. Trial registration number NCT04271085.

Lived Experiences of Family Members of Patients With Severe COVID-19 Who Died in Intensive Care Units in France.

Abstract: Importance During the initial surge of the COVID-19 pandemic, family members were often separated from their loved ones admitted to intensive care units (ICUs), with a potential for negative experiences and psychological burden. Objective To better understand the experiences of bereaved family members of patients who died in an ICU during the COVID-19 pandemic, from the time of hospital admission until after the patient’s death. Design, Setting, and Participants This qualitative study used semistructured, in-depth interviews to collect experiences from bereaved family members of patients who died from severe COVID-19 in 12 ICUs during the first wave of the pandemic in France. Purposeful sampling was used to ensure the diversity of study participants with respect to sex, age, relationship with the patient, and geographic location. All data were collected between June and September 2020, and data analysis was performed from August to November 2020. Main Outcomes and Measures Interviews were conducted 3 to 4 months after the patient’s death and were audio-recorded and analyzed using thematic analysis. Results Among 19 family members interviewed (median [range] age, 46 [23-75] years; 14 [74%] women), 3 major themes emerged from qualitative analysis. The first was the difficulty in building a relationship with the ICU clinicians and dealing with the experience of solitude: family members experienced difficulties in establishing rapport and bonding with the ICU team as well as understanding the medical information. Distance communication was not sufficient, and participants felt it increased the feeling of solitude. The second involved the patient in the ICU and the risks of separation: because of restricted access to the ICU, family members experienced discontinuity and interruptions in the relationship with their loved one, which were associated with feelings of powerlessness, abandonment, and unreality. The third was regarding disruptions in end-of-life rituals: family members described “stolen moments” after the patient’s death, generating strong feelings of disbelief that may lead to complicated grief. Conclusions and Relevance This qualitative study found that during the initial wave of the COVID-19 pandemic in France, bereaved family members described a disturbed experience, both during the ICU stay and after the patient’s death. Specific family-centered crisis guidelines are needed to improve experiences for patients, families, and clinicians experiences.

Health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic: A qualitative study.

Abstract: Background:Health and social care professionals’ ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic.Aim:To explore ...

Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives' experiences during the COVID-19 pandemic

Abstract: Background:COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families.Aim:To explore bereaved relatives’ experiences of quality of care and...

Changes in mortality patterns and place of death during the COVID-19 pandemic: A descriptive analysis of mortality data across four nations.

Abstract: Background:Understanding patterns of mortality and place of death during the COVID-19 pandemic is important to help provide appropriate services and resources.Aims:To analyse patterns of mortality ...

Saying goodbye all alone with no close support was difficult"- Dying during the COVID-19 pandemic: an online survey among bereaved relatives about end-of-life care for patients with or without SARS-CoV2 infection."

Abstract: Background: During the SARS-CoV2 pandemic, protection measures, as well as visiting restrictions, had a severe impact on seriously ill and dying patients and their relatives. The study aims to describe the experiences of bereaved relatives of patients who died during the SARS-CoV2 pandemic, regardless of whether patients were infected with SARS-CoV2 or not. As part of this, experiences related to patients’ end-of-life care, saying goodbye, visiting restrictions and communication with the healthcare team were assessed. Methods: An open observational post-bereavement online survey with free text options was conducted with 81 bereaved relatives from people who died during the pandemic in Germany, with and without SARS-CoV2 diagnosis. Results: 67/81 of the bereaved relatives were female, with a mean age of 57.2 years. 50/81 decedents were women, with a mean age of 82.4 years. The main underlying diseases causing death were cardiovascular diseases or cancer. Only 7/81 of the patients were infected with SARS-CoV2. 58/81 of the relatives felt burdened by the visiting restrictions and 60/81 suffered from pandemic-related stress. 10 of the patients died alone due to visiting restrictions. The burden for relatives in the hospital setting was higher compared to relatives of patients who died at home. 45/81 and 44/81 relatives respectively reported that physicians and nurses had time to discuss the patient’s condition. Nevertheless, relatives reported a lack of proactive communication from the healthcare professionals. Conclusions: Visits of relatives play a major role in the care of the dying and have an im pact on the bereavement of relatives. Visits must be facilitated, allowing physical contact. Additionally, virtual contact with the patients and open, empathetic communication on the part of healthcare professionals is needed. Trial registration: German Clinical Trials Register (DRKS00023552).