Implementing and evaluating online advance care planning training in UK nursing homes during COVID-19: findings from the Necessary Discussions multi-site case study project.

BACKGROUND: Advance care planning in nursing homes is important to ensure the wishes and preferences of residents are recorded, especially during the COVID-19 pandemic. However, care staff and family members frequently report feeling unprepared for these conversations. More resources are needed to support them with these necessary discussions. This research aimed to develop, implement and evaluate a website intervention for care staff and family members to provide training and information about advance care planning during COVID-19. METHODS: The research was a primarily qualitative case study design, comprising multiple UK nursing home cases. Data collection included semi-structured interviews with care staff and family members which were coded and analysed thematically. A narrative synthesis was produced for each case, culminating in a thematic cross-case analysis of the total findings. Theoretical propositions were refined throughout the research. RESULTS: Eight nursing homes took part in the study, involving 35 care staff and 19 family members. Findings were reported according to the RE-AIM framework which identified the reach, effectiveness, adoption, implementation and maintenance of the intervention. Themes included: website content that was well received; suggestions for improvement; implementation barriers and facilitators; examples of organisational and personal impact. CONCLUSIONS: Four theoretical propositions relating to advance care planning in nursing homes are presented, relating to: training and information needs, accessibility, context, and encouraging conversations. Implications for practice and training include an awareness of diverse learning styles, re-enforcing the right to be involved in advance care planning and encouraging opportunities for facilitated discussion. TRIAL REGISTRATION: ISRCTN registry (ID 18003630 ) on 19.05.21.

Impacts of COVID-19 lockdowns on frailty and wellbeing in older people and those living with long-term conditions.

Lockdowns and social distancing have been important and successful strategies to limit the spread of the coronavirus disease 2019 (COVID-19) virus. However, excess deaths related to non-COVID-19 causes have been reported, suggesting issues around availability and use of health services, particularly for people with conditions needing ongoing medical support. In addition, evidence indicates that a range of age-related diseases and frailty are impacted by physical activity and social engagement, both limited in lockdown situations. It is therefore important to learn from the effects of lockdowns in order to limit any impacts, while still protecting people from the infection. This editorial summarizes two research themes at the Centre for Ageing Research at Lancaster University in the UK, one assessing impacts of lockdown for people living with a long-term neurodegenerative condition, Parkinson's disease, and one assessing longitudinal impacts on frailty and wellbeing, with older adults aged over 70, including those living with at least one long-term condition. Uncertainty related to Parkinson's disease and to COVID-19 amplified each other, and cancelled clinical appointments and limitations on physical activity had very significant impacts on wellbeing for this group. In the longitudinal study, frailty was more severe during lockdown periods. While lockdowns reduce spread of the virus, becoming frailer could make older adults more vulnerable to the effects of the virus during these periods. Regular exercise during lockdown had beneficial effects aiding recovery once restrictions relaxed. These studies suggest factors that could lessen negative impacts of future lockdowns. Maintaining physical activity and providing access to health services during periods of lockdown are suggested as priorities.

'It's a double whammy': A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19.

OBJECTIVES: The purpose of this study was to explore the experiences of individuals with Parkinson's through the theoretical lens of illness uncertainty during the first UK full lockdown period (March-June 2020) put in place due outbreak of the COVID-19 pandemic. METHODS: Individual semi-structured interviews were carried out via telephone in May 2020 with 10 individuals with Parkinson's (six men and four women) recruited from Parkinson's UK. Interviews were recorded and transcribed verbatim, and thematic analysis was adopted to analyse the resulting data. RESULTS: Four overarching themes emerged from the interview data: (1) COVID-19 amplifying existing fears and difficulties around the uncertainty of Parkinson's; (2) practical and psychological efforts to manage uncertainty; (3) benefit-finding as a way of acknowledging the positives of lockdown; (4) risk and future management in the context of uncertainty. DISCUSSION: Participants reported a range of implicit and explicit strategies to cope with the 'double whammy' of uncertainty caused by having Parkinson's during a global pandemic. While these were generally successful in maintaining well-being, it is important that such successful accounts are used to help inform novel strategies and interventions targeting individuals who might need additional support.

Developing and evaluating online COVID-centric advance care planning training and information resources for nursing staff and family members in nursing homes: the necessary discussions study protocol.

BACKGROUND: Nursing home residents are typically older adults with high levels of chronic illness and impairment. As such, they are particularly susceptible to severe complications and mortality from COVID-19. Since all nursing home residents are at increased risk, nursing home care staff need to know what residents would want to happen should they become infected with COVID-19. This study aims to develop and evaluate advance care planning (ACP) COVID-centric online training and information resources for nursing home staff and family members of residents, to improve care at the end of life during a COVID-19 outbreak. Based on the findings we will develop implementation guidelines for nursing homes to ensure wider impact and application during the pandemic and beyond. METHODS: The content of the training and information resources will be based on a rapid review of literature and guidance on ACP in the context of COVID-19 and consultation with the study expert reference group. An integrated communications company will then work alongside the research team to design the online training and information resources. To evaluate the resources, we will employ a multiple case study design where a nursing home (defined as an institutional setting in which nursing care is provided to older adults on-site 24 h a day) will be the unit of analysis or 'case'. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. We will recruit and interview staff and family members from between 6 and 9 nursing homes across Northern Ireland, England and Scotland and gather quantitative data from a feedback survey included in the training and information resources. DISCUSSION: The Necessary Discussions study is very timely given the challenging experiences of nursing homes, their staff, residents and their family members during the COVID-19 pandemic. It meets a key need and addresses an important gap in research and practice. The training and information resources will be 'COVID-centric', but they will also have a longstanding relevance for future ACP practice in UK care homes. TRIAL REGISTRATION: ISRCTN registry ( ID 18003630 ) on 19.05.21.