Living with myeloma at an end of life phase during COVID-19
Research type
Research Study
Full title
How individuals living with myeloma experience an end of life phase during COVID-19: An Interpretative Phenomenological Analysis
IRAS ID
291292
Contact name
Noelle Robertson
Contact email
Sponsor organisation
University of Leicester
Duration of Study in the UK
0 years, 11 months, 24 days
Research summary
Research Summary
The COVID-19 pandemic has resulted in high mortality rates worldwide as well as significant social and economic disruption. Patients living with myeloma, a haematological cancer with no known cure, have been classified as extremely clinically vulnerable during this time and have been advised to shield. For those nearing the end of life, this guidance may be at odds with the values and preferences of the patient and their family, which are important in ensuring a ‘good death’. Government advice regarding social and behavioural changes, as well as legislative changes, may have disrupted daily routines, connection with others and end of life plans.
During the first lockdown, 35% of individuals in the extremely clinically vulnerable group reported their mental health became worse or much worse and emerging research suggests that people who were more isolated than usual during lockdown experienced higher levels of depression and anxiety. Psychological distress strongly negatively affects quality of life for advanced cancer patients suggesting that people living with myeloma may experience greater challenge to maintaining mental health and quality of life during this COVID-19 pandemic.
Whilst a growing research body has examined the experiences of frontline healthcare workers during pandemics, very little research exists seeking to understand cancer patients’ experiences. There is currently no research specifically focused on myeloma patients’ experiences within an end of life phase, nor is there research exploring the experience of moving towards end of life with myeloma during a pandemic.The aim of this research is to conduct interviews to better understand the experiences of myeloma patients for whom active treatment has reached its limits and who are living within an end of life phase during the COVID-19 pandemic. The study further aims to give voice to this underrepresented group and articulate their needs in order to shape service provision and inform care.
Summary of Results
How individuals living with myeloma experience an end of life phase during COVID-19: An Interpretative Phenomenological Analysis Laura Francis, Noelle Robertson
Objectives: During the COVID-19 pandemic those with haematological cancers such as myeloma were labelled as clinically extremely vulnerable and advised to shield. Established palliative care practices understood to promote a good death were disrupted by restrictions and this research aimed to explore the experiences of myeloma patients living within an end of life phase during the COVID-19 pandemic.
Method: Semi-structured interviews were carried out with two women and four men who had been diagnosed with myeloma and for whom fourth line treatment had failed. Interviews were transcribed verbatim and data were analysed using Interpretative Phenomenological Analysis.
Results: The experiences of those living with myeloma during COVID-19 were captured through three super ordinate themes: “Threat is all around”; “My world became smaller”; and “Outside I’m a swan”. These themes highlighted heightened uncertainty due to the pandemic and multiple losses, including disconnection from loved ones and magnified intensity of held emotions. However, the pandemic also mitigated social pressures to continue roles and responsibilities and allowed time for participants to develop a more value-driven way of living.
Conclusions: Findings suggested the COVID-19 pandemic amplified already-recognised challenges experienced by those in an end of life phase with myeloma, alongside providing some unexpected solace and comfort. Nevertheless, palliative care must ensure identification of patient values and prioritisation of personal preferences. Ongoing research is needed to further inform patient-centred care and palliative care within this population.
REC name
HSC REC A
REC reference
21/NI/0072
Date of REC Opinion
19 May 2021
REC opinion
Further Information Favourable Opinion