Title: Supporting decision making on goals of care for community-dwelling patients living with a progressive life-limiting illness
Funder: Marie Curie

Abstract: Background. In the UK, there are an increasing number of people living in the community with progressive life-limiting illnesses. Despite this, there is a lack of advance care planning (ACP) for community dwelling patients. Community nurses can play a leading role in addressing this issue by introducing and facilitating ACP discussions earlier in the illness progression. Education to promote understanding of ACP and to provide skills for engaging in discussions is needed if community nurses are to develop this role in the care of patients and family carers. Study aim. This project aims to develop an ACP digital intervention to support decision-making on goals of care at the end-of-life for patients and families. Through the development of our ACP digital intervention, we will both develop capacity within community nursing to deliver ACP and enhance patients and families understanding on ACP, facilitating meaningful shared decision-making between parties in these discussions. Objectives. The objectives of this project include: 1. Co-develop an ACP digital education resource for community nurses; 2. Co-develop an ACP digital information resource for community dwelling patients and their family carers. 3. Identify the facilitators and barriers to implement the ACP digital intervention for staff and patient / family carers 4. Develop implementation and evaluation guidelines for the ACP digital intervention that will facilitate widespread use within the community care sector of the UK. Methodology. This study will employ a 2-phase co-design approach. Phase 1 will include four co-design workshops (N=40) to discuss the digital intervention and seek recommendations about content and design. We will conduct qualitative interviews with a subset of patients, family carers and community nurses (N=12) in phase 1, to further explore experiences of ACP and decision support needs. Phase 2 will include the development of the digital intervention, engaging with up to 60 community nurses and 60 patients/family carers to complete and evaluate the intervention and its impact. Expected outcomes include: 1. Enhanced knowledge of conducting end-of-life discussions; 2. Improved ability for community nurses to assess patients' needs and respond more appropriately in relation to ACP; 3. Enhance decision making and end-of-life support among patients/family members; 4. Enhance understanding of ACP among patients and family members; 5. Improve communication between staff and family members regarding health care needs; 6. Co-design of an open online ACP resource for use by community nurses.

Lay abstract: There are an increasing number of people living in the community with progressive life-limiting illnesses. Despite this, there is a lack of advance care planning for community dwelling patients. Community nurses can play a leading role in addressing this issue by introducing and facilitating advance care planning discussions earlier in the illness progression. Education to promote understanding and to provide skills for engaging in these discussions is needed if community nurses are to develop this role in the care of patients and family carers. The aim of this project is to support shared decision making on goals of care at the end-of-life for community dwelling patients and families, ensuring what matters most to the patient is known. To achieve this, we will develop an advance care planning digital resource for patients, family carers, and community nurses in the UK. To develop the digital resource, we will organise four co-design workshops with up to 40 patients, family carers and community nurses to seek recommendations about content and design. We will also have individual discussions with up to 12 people who take part in the workshops to explore experiences of advance care planning and decision support needs. The advance care planning digital resource will then be evaluated with up to 60 community nurses and 60 patients/family members drawn from across the UK. It is expected the digital resource will enhance understanding among patients and families on advance care planning, enhance decision making and end-of-life support, improve communication regarding health care needs, enhance knowledge of conducting end-of-life discussions, improve community nurses ability to assess patient needs and promote the delivery of advance care planning in community nursing.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE