What are the Challenges and Resilience Resources Identified by Informal Carers During the First UK COVID-19 Lockdown? A Longitudinal Qualitative Study Using Naturalistic Data.

COVID-19 has posed serious challenges for informal carers living in the UK. This article examines some of the specific challenges facing carers and the resources they used to manage them throughout the first UK lockdown. We used a framework approach to analyse naturalistic, longitudinal data from 30 carers taking part in 96 of Mobilise's daily Virtual Cuppas between March and July 2020. We found that lack of information and social restrictions cumulatively impacted carers' sense of certainty, control and motivation. This took an emotional toll on the carers, leading to exhaustion and burden. However, carers quickly established new routines and used humour and self-care to actively manage their wellbeing. Carers received support but also provided it to those in need, including fellow members of the caregiving community, supporting an ecological approach to carer resilience. Our findings may be used to anticipate challenges and promote protective resilience resources in future lockdowns.

Exploring Resilience in UK-Based Domiciliary Care Workers before and during the COVID-19 Pandemic.

Domiciliary carers (DCs) provide an invaluable service that enables people living with dementia (PLWD) to remain living in their own homes for as long as possible. We know a lot about the negative impacts of providing domiciliary care and recent evidence suggests that this was exacerbated by the COVID-19 pandemic. However, we know much less about how these DCs manage the stressors associated with their roles. The current study adopts a resilience perspective to identify the resources that DCs caring for PLWD draw on to manage the stress associated with their roles before and during the COVID-19 pandemic. We conducted semi-structured interviews with 19 DCs from across the UK. Data were analysed using a directed qualitative content analysis. Themes included: healthy boundaries; motivation to care; psychological attributes; managing work; and support. The findings have implications for employers and may go some way towards improving DC working conditions, retaining staff, and attracting new DCs in the future.

Resilience and supporting people living with dementia during the time of COVID-19; A qualitative study.

OBJECTIVES: To explore the different factors of resilience for people living with dementia and unpaid carers, in response to sudden changes in care and lifestyle during the COVID-19 pandemic. METHODS: Unpaid carers and people living with dementia were offered telephone interviews in April 2020 to discuss their experiences since the COVID-19 pandemic. Participants were asked about the benefits and challenges of accessing dementia support, as well as coping, symptoms, strategies and impacts. Each transcript was analysed using inductive and deductive thematic analysis by two researchers. FINDINGS: Semi-structured interviews from 50 participants (n = 42 unpaid carers and n = 8 people living with dementia) reported protective and risk factors of resilience concerning (1) communication, (2) adaptations, (3) support networks and (4) lifestyle factors and coping mechanisms. CONCLUSIONS: Resilience factors considered both organisational factors for external support, along with individual coping mechanisms. Organisations and social support services should consider resilience factors in future service planning, to better support people living with dementia, or caring someone living with dementia, during times of great stress. The ecological model of resilience established from this research refers to resilience during times of unexpected change in the COVID-19 pandemic; however, it could be considered relevant in other periods of high stress within this cohort.

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.

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 family support provided during the last days of life; to identify the impact of factors associated with perceived support. DESIGN: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June-September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. PARTICIPANTS: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. RESULTS: Respondents (n = 278, mean 53.4 years) tended to be female (n = 216, 78%); over half were 'son/daughter' (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their 'usual place of care' (n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of 'not knowing'; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. CONCLUSION: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.

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

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 health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March-June 2020) of the COVID-19 pandemic in the United Kingdom. RESULTS: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. CONCLUSION: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.

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

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 to have been deleteriously impacted by the COVID-19 crisis. Understanding how families' needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. AIM: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. SETTING/PARTICIPANTS: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. RESULTS: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of 'saying goodbye' in a pandemic. CONCLUSIONS: Health and social care professionals can have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to 'say goodbye'.

5 Restricted visiting and gender influence perceptions about end-of-life care support: a national UK survey of bereaved relatives’ views

BackgroundThe COVID-19 pandemic significantly affected experiences of death and dying for patients and families. Our focus was on bereaved relatives’ perceptions about experiences of care in the last days of life during the pandemic to help inform practice and policy.MethodsA national online survey, informed by patient and public involvement, was developed and disseminated via social media, public and professional networks between June and October 2020. Validated instruments (e.g. abbreviated ‘Care Of the Dying Evaluation’ questionnaire) and purposively designed questions were used to assess the impact of COVID-19. Data was analysed using descriptive statistics, logistic regression and thematic analysis of free-text responses.ResultsRespondents (n=278) had a mean age of 53.4 years (range 19–68);216 (78.0%) female and 174 (62.6%) ‘son/daughter’ to the deceased. Over half (156, 56.5%) were unable to visit during the dying phase. Almost 70% of the deceased (mean age 80.5 years;160 (57.6%) female) died in their ‘usual place of care’ (home n=30 (10.8%);nursing home n=162 (58.3%)). This was perceived as the ‘right place’ by 176 (75.2%) respondents. Positive perceptions were reported about nursing care compared with medical care. Unmet support was reported: 71 (30.1%) rated emotional support as ‘poor’;110 (45.5%) perceived they were inadequately supported prior to death. Being a male respondent (OR 2.9, p=0.03) and able to visit during the last days of life (OR 2.2, p=0.04) were independently associated with perceptions about being adequately supported. Corresponding free-text analysis suggested ‘not knowing’ about care was especially distressful;‘clear, compassionate leadership’ contributed to positive experiences.ConclusionsCapturing these experiences during the height of the first COVID-19 wave is pertinent to inform measures to enhance care. Disconnection between dying patients and families is a key area to be addressed and the challenge of balancing individual and societal needs to enable high quality end-of-life care.