Necessary discussions: Advance care planning for nursing homes in a COVID-19 outbreak
Lead Research Organisation:
Queen's University Belfast
Department Name: Sch of Nursing and Midwifery
Abstract
It is likely that nursing homes in the UK will become clusters in their communities for the worst clinical manifestations of COVID-19. Since all nursing home residents are at substantial risk, nursing home care staff need to know what residents would want to happen should they become infected with COVID-19. The aim of this project is to develop and evaluate an online advance care planning (ACP) COVID-centric intervention for nursing homes during a COVID-19 outbreak to improve care at the end of life.
Findings from a rapid review of available resources will be used to develop an online ACP COVID-centric intervention for training nursing home staff and providing an information resource to family carers. Nine nursing homes will participate in the project with three nursing homes located in Northern Ireland, England, and Scotland. We will collect data from up to 54 family carers and 45 nursing home staff. Expected outcomes: (a) enhanced knowledge of conducting end of life discussions during COVID distancing measures; (b) improved ability for staff to assess resident needs and respond more appropriately in relation to ACP; (c) enhanced decision making among family members regarding resident care; (d) improved communication between staff and family carers regarding their relatives health care needs; (e) increased evidence of completed ACPs; (f) development of open source online ACP COVID-centric resources for use by nursing homes.
Findings from a rapid review of available resources will be used to develop an online ACP COVID-centric intervention for training nursing home staff and providing an information resource to family carers. Nine nursing homes will participate in the project with three nursing homes located in Northern Ireland, England, and Scotland. We will collect data from up to 54 family carers and 45 nursing home staff. Expected outcomes: (a) enhanced knowledge of conducting end of life discussions during COVID distancing measures; (b) improved ability for staff to assess resident needs and respond more appropriately in relation to ACP; (c) enhanced decision making among family members regarding resident care; (d) improved communication between staff and family carers regarding their relatives health care needs; (e) increased evidence of completed ACPs; (f) development of open source online ACP COVID-centric resources for use by nursing homes.
Publications
| Description | An online advance care planning (ACP) COVID-centric resource for nursing home staff and family members of residents was developed and evaluated. Findings from a rapid review of COVID specific ACP guidance provided relevant information in the context of COVID-19 which informed the resource design. A multiple case study design involving semi-structured interviews was used to evaluate the resource. The aim of the evaluation was: 1) to understand barriers and facilitators to implementation; 2) to explore acceptability among staff and family members; 3) to determine the personal and organisational impact of implementing the resource. Eight nursing homes in the UK (NI, n = 3; Scotland, n = 2; England, n = 3) participated in the study. In total, 35 care staff and 19 family members were recruited across the 8 homes. Evaluation interviews showed the website and content was well received by both staff and family members. Staff and family members felt the information was comprehensive and explained the key components of ACP well. When asked what they liked about the resource, the vibrant website design, audiovisual content and the way ACP was described emerged as key factors. Improvements were identified, for example, family members recommended including printable documents to support sharing of information between family members. Printable information was regarded as necessary for those who do not have access to technology. In addition, the resource was considered useful irrespective of COVID-19. This highlighted the need to clarify the COVID-19 focus and for ACP information in general. For staff, suggested improvements were the application of a blended learning approach and inclusion of formative or summative assessments. A blended learning approach would ensure content is relatable at an organisational level and additional assessment approaches would consolidate learning. In terms of facilitators and barriers to use, we found that the emotional content, computer skills and time were main barriers to uptake. The website's accessibility and inclusion of bite-size information were viewed as facilitators. Interviews with staff and family members showed the online resource increased knowledge and confidence regarding ACP during a COVID-19 outbreak. Staff reported feeling more confident and ready to engaging in ACP discussions. Family members reported feelings of empowerment and were reassured about their involvement in ACP after viewing the information. The resource was used to review ACP policies and there was a clear desire for a wider roll out of the new product . The resource is available at www.covidacpcarehome.com. |
| Exploitation Route | There are plans to disseminate and update the resource to sustain use by nursing homes and other organisations. |
| Sectors | Education Healthcare |
| Description | The COVID-19 outbreak highlighted the need to provide information on advance care planning (ACP) for nursing homes. An online ACP COVID-centric resource was developed as part of this award to address this informational need. The resource was evaluated in 8 nursing homes in the UK and found to increase awareness and understanding among staff and family members. The resource was launched via press release in January 2022, which led to additional media coverage, requests for more information and increased use. Additional funding has been secured by members of the research team to adapt the 'Necessary Discussions' website for use by community nurses and another for health care providers in England. The resource is offered as an optional learning tool for nursing students at Queen's University Belfast and is also available on the information and support section of the Marie Curie website. |
| First Year Of Impact | 2022 |
| Sector | Education,Healthcare |
| Impact Types | Cultural Societal Policy & public services |
| Description | Participation in stakeholder engagement meeting - Department of Health Advance Care Planning Policy for Northern Ireland (for adults) |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Title | Necessary Discussions website |
| Description | A training and information website was development for staff and family members of residents in nursing homes. The product aims to increase understanding of advance care planning (ACP) in a COVID-19 outbreak. The website provides 6 training units for staff: 1) introduction to ACP; 2) key components of ACP; 3) How to complete an ACP; 4) Recording and sharing ACP; 5) finding the right words: tips for having discussions; 6) caring for yourself. Information for family members of residents was also included in 6 sections: 1) what is ACP; 2) why is ACP important; 3) what might be included in an ACP; 4) who takes part in ACP; 5) how do I take part in ACP; 6) how do I care for myself. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Impact | In total, there has been 2,129 total visitors/users to the website from May 2021 to date, equating to 4,503 page views. International sessions recorded e.g. UK, US, Netherlands, Canada, Republic of Ireland, Czech Republic. 8 care homes, 30 care home staff and 18 family members across Northern Ireland, England and Scotland participated in the evaluation of the online resource. Evaluation interviews with care home staff and family members showed evidence of increased understanding, confidence, and preparedness for advance care planning conversations. The online resource was also used to review advance care planning policies in care homes. |
| URL | http://www.covidacpcarehomes.com |
| Description | Academic Plenary on End of Life Care, Institute for Public Policy Research, UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Brazil., K. (2021). Necessary discussions: advance care planning for nursing homes in a COVID-19 outbreak. Academic Plenary on End of Life Care, Institute for Public Policy and Research, UK. The development and evaluation stages were presented, which provided an opportunity to raise awareness of the project. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Alzheimer's Europe Conference 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Harding, A. (2021). Lessons learnt from undertaking dementia nursing home research remotely & online during a global pandemic: Tales from two advance care planning implementation studies. Alzheimer's Europe Conference, UK. This presentation provided an opportunity to share information on lessons learnt from undertaking the 'Necessary Discussions' project during a global pandemic. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | A blog article titled Necessary Discussions, supporting family carers and staff in advance care planning during a COVID-19 outbreak in a care home was published by Professor Kevin Brazil on the mySupport study website. The purpose of the article was to raise awareness of the online advance care planning COVID-centric resource developed as part of this award. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://mysupportstudy.eu/necessary-discussions-supporting-family-carers-and-staff-in-advance-care-p... |
| Description | European Association for Palliative Care |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Varey, S. (2021). Necessary Discussions: The development of online resources to support advance care planning in nursing home in a COVID19 context. 17th World Congress of The European Association for Palliative Care Conference. Information on the development process including user involvement was presented with a view to raising awareness of the project. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Expert reference group meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | The expert reference group meeting took place in October 2020 and involved 16 individuals from a range of disciplines. Advance care planning in a COVID-19 outbreak and the informational needs of nursing home staff and family members were discussed. An outline of the learning resource was discussed and refined based on feedback from group members. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Expert reference group meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The final expert reference group meeting for this project took place in November 2021. The advance care planning resource was discussed and decisions made regarding sustainability and dissemination. |
| Year(s) Of Engagement Activity | 2021 |
| Description | International panel of advance care planning experts and PPI members |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Development and evaluation of the online advance care planning (ACP) resource for nursing homes in a COVID-19 outbreak was discussed. The discussion provided an opportunity to raise awareness of the resource and extend its reach internationally. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Marie Curie presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Brazil, K., Doherty, J., & Finucane, A. (2022). Necessary Discussions: Supporting advance care planning during a COVID-19 outbreak in a care home. Marie Curie network meeting. The development and evaluation of the resource was presented, providing an opportunity to raise awareness of the resource and share information on its impact. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Meeting - Marie Curie NI and RCGPs |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | This meeting allowed us to share information about our study with key stakeholders and discuss issues around advance care planning in a COVID-19 outbreak. It also provided the opportunity to discuss the potential for future collaboration. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Meeting with regional lead for advance care planning in Northern Ireland |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Discussion on advance care planning and opportunities for future collaboration. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Palliative Care Congress in Brazil |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Presentation at the Palliative Care Congress 2021 on advance care planning (ACP) during a COVID-19 outbreak. A link to the online ACP COVID-centric resource was shared, which led to interest in translating the resource into Portuguese. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Palliative Care Research Forum Northern Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | Presenting to the Palliative Care Research Forum Northern Ireland on progress to date and the development of the online COVID-centric resource. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Presentation - BGS Northern Ireland meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Doherty, J. (2022). Supporting care homes in advance care planning during a covid-19 outbreak. British Geriatric Society, Annual Northern Ireland Meeting. This presentation provided an opportunity to introduce the advance care planning resource to practitioners. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation - Northern Ireland BPS annual conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | Oral presentation on the process involved in the development of the online COVID-centric advance care planning resource. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation - care home conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Doherty. J. (2022). Necessary discussions: supporting family carers and care staff in advance care planning during a covid-19 outbreak. Presentation to care home staff on development and evaluation of the digital resource. This provided an opportunity to introduce the educational resource to the care home sector in Northern Ireland. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation - public lecture at Lancaster University |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Presentation to nearly 200 members of the public on the importance of advance care planning. Provided an opportunity to share information on the development and evaluation of the online COVID-centric advance care planning resources for nursing home staff and family members. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Press release |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Press release by Queen's University Belfast to launch the online advance care planning resource. Led to a request for a radio interview and additional media coverage: ENP newswire, DailyAdvent.com, Irish News (Circulation: 31613), Belfast Telegraph (Circulation: 31340), Mirage News Australia. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.qub.ac.uk/News/Allnews/Newresourcelaunchedtohelpcarehomeresidentsandfamiliesduringpandem... |
| Description | Professorial Lecture series |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | Prof Kevin Brazil - the project PI - showcased this project within his Public Lecture 'Addressing inequality suffered by the frail and dying'. The purpose of this event is to celebrate and share the expertise of professors from the School of Nursing & Midwifery at Queen's University Belfast, and learn more about their world leading teaching and learning practice and innovative research. |
| Year(s) Of Engagement Activity | 2023 |
| Description | QUB press release |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | A press release outlining this project was published by Queens University Belfast in August 2020. This resulted in requests for further information. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Radio interview on BBC Radio Ulster's 'On Your Behalf' |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Radio interview with Professor Kevin Brazil, Queen's University Belfast and Christine Redall (PPI representative). The interview led to requests for further information and an increase in website usage. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Website - Long Term Care resources to COVID-19 |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | An overview of the project was shared on the long term care (LTC) responses to COVID-19 section of the international LTC policy network website. Information was shared on this site to raise awareness of this work internationally. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://ltccovid.org/2020/10/08/new-study-advance-care-planning-for-nursing-homes-in-a-covid-19-outb... |