Improving Palliative Care Education and Training Using Simulation in Dementia (IMPETUS-D)

Those in the intervention group will participate in IMPETUS-D a screen-based simulation training program. The training program consists of 11 modules that can be accessed on PC, laptop, tablet or smartphone. covering key aspects of high quality palliative care for people with dementia towards the end of life. These aspects were judged to be the most relevant for nursing and care home staff, informed by multiple sources including, staff working in residential care, published literature, and the advice of the IMPETUS-D Project Working and Advisory Group which included palliative care, dementia and aged care experts. The following is an outline of the overview of the content for each module: Module 1: This module describes the natural progression of advanced dementia and how to recognise when deterioration is due to dementia versus delirium. The module introduces Nancy Thompson a resident with dementia, and in two video-based scenarios Nancy declines (i) due to the progression of dementia and (ii) due to an acute delirium. Module 2: This module focuses on caring for a person with advanced dementia when they are dying. It includes regular discussions with the family so everyone is on the same page, and focusing care on maximising wellbeing, comfort and dignity, and minimising distress. The module includes audio recordings of personal care attendants (PCAs) and family members talking about 3 residents who received suboptimal care, and asks learners to write down their thoughts on what could have been done differently. Module 3: This module discusses the reasons why people with advanced dementia are typically best cared for in the care home, and describes the challenges people with advanced dementia face in the busy hospital environment. The module introduces Antonio Conti a resident with dementia and his wife Bianca. It includes a video-based scenario where Bianca confronts a PCA as she is very worried that Antonio may need to go into hospital, as last time he went to hospital, things did not go well. Module 4: This module gives an introduction to Goals of Care (GOC) plans, and highlights that finding out what’s important to the person is vital to providing best care. It follows the development of a GOC plan including a GOC discussion between Antonio, his family, the care manager and general practitioner. This module includes audio-recordings of a good GOC discussion with Antonio’s GP and family; and audio-recordings from care home staff giving their perspective on GOC discussions. Module 5: This module describes what is needed to be a high quality and best practice Goals of care (GOC) plan. It provides examples of how to best use GOC plans for residents with dementia, and describes situations when a person with advanced dementia needs to go to hospital. In this module a video-based scenario involving Antonio Conti demonstrates there are exceptions that require transfer to hospital. Module 6: This module discusses pain and the challenges in managing pain in people with advanced dementia. It highlights the importance of how to recognise it, document it, and act on it including speaking up for people with dementia who are in pain. In addition, it describes some of the myths and truths about opioid use. . This module introduces Mrs Keya Basu a resident with advanced dementia. It includes a video-based scenario where Mrs Basu’s daughter Priya can hear her mother crying out in pain while a wound dressing is being changed. Module 7: This module focuses on recognising the dying phase, including reduced eating and drinking, and helping families understand that reduced eating and drinking at the end of life is normal. This module includes a video-based scenario where Mrs Basu’s daughter Priya tells a PCA she is concerned her mother is not eating or drinking, and questions the need for a drip or feeding tube. Module 8: This module has 2 parts. The first discusses focussing on what is most important to the person when they are dying and ways to keep a person as comfortable as possible. The second part describes terminal restlessness a common end of life symptom, and how care staff can recognise and manage it. This module includes a scenario where Mrs Basu’s daughter Priya is talking to a PCA about her mother being restless. Module 9: This module focuses on changes in breathing at end of life, what to expect as death approaches and ways to support the family. It also discusses the concerns care staff may have as a resident approaches death and includes reflection of learners’ real experiences. This module includes a scenario with a PCA expressing concerns about “what if Mrs Basu dies on my shift?” Module 10: This module raises the importance of communicating openly, honestly and continuously with residents and their family members. Strategies for this communication are offered for difficult conversations. Three video-based scenarios of challenging situations involving Antonio Conti’s family are presented. Module 11: This module shifts the focus of caring from residents to care providers. It encourages carers to consider their own feelings about death and dying and how they manage these feelings when a resident is at the end of their life and then dies. It offers strategies to manage emotional wellbeing and ways to contribute a compassionate culture in their workplace. The module includes audio recordings of PCAs talking about some real experiences, and encourages learners to role play a conversation that acknowledges feelings. Each module has been designed to take approximately 15 minutes, and participants can access the modules at their discretion. Modules 1-3, 6-9 and 11 have been designed for Personal carers as the targeted learners; and Modules 4 and 5 have been designed for nurses as the targeted learners. Module 10 has been designed for all care home staff. All modules will be available to all staff to participate in throughout the study timeframe. Personal carers (or PCAs) will be expected to complete at least 5 of the modules – modules 1-3 and 10, and one symptom management module (Modules 6-9). The remaining modules on goals of care discussions, goals of care plans, and staff well-being will be recommended for them to complete. Nurses will be expected to complete the two goals of care modules and the communication module. All other modules will be recommended for nurses to complete. We are aiming for 80% of staff to complete the 'expected to complete' modules. There will be a 2-month training period during which time staff in the intervention group will be encouraged by the project team to participate in the training program. During the 2-month training period project consultants will send email or text reminders on a weekly basis, as well as attend staff meetings in person where participation rates are low. Outcome data will not be collected until after the 2-month training period. Participants will continue to be able to access the training program as many times as they want and need throughout the study time-frame. The amount of usage (hits and time spent) and module completion data will be collected via the learning management system (LMS).