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.

Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan.

BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

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.

Anticipatory care planning for older adults: a trans-jurisdictional feasibility study.

BACKGROUND: As the population of older adults' increases, the complexity of care required to support those who choose to remain in the community has also increased. Anticipatory Care Planning (ACP) through earlier identification of healthcare needs is evidenced to improve quality of life, decrease the number of aggressive futile interventions, and even to prolong life. AIM: To determine the feasibility of a cluster randomised trial to evaluate the implementation and outcomes of Anticipatory Care Planning (ACP) in primary care to assist older adults identified as at risk for functional decline by developing a personalised support plan. METHOD: GP practices were randomised into control/intervention groups stratified by jurisdiction [Northern Ireland (UK) and the Republic of Ireland (RoI)], and by setting (urban and rural). Participants were included if they were a) aged ≥70 years, b) 2 or more chronic medical conditions, c) 4 or more prescribed medications. The Anticipatory Care Plan consisted of home visits where the study nurse discussed patients' goals and plans. An action plan was put in place following consultation with patient's GPs and study Pharmacist. RESULTS: Eight primary care practices participated; four in the UK and four in the RoI. Sample n = 64. Data was collected pertaining to patient quality of life, mental health, healthcare utilisation, costs, perception of person-centred care, and the use of potentially inappropriate medication. CONCLUSION: Unique insights relating to the trans-jurisdictional delivery of healthcare services in the UK and RoI were observed which has implications on service delivery for older adults.