What is the positive change that has emerged through new collaborations or partnerships during Covid-19 that your project is going to embed?

We work within two national research centres; the Royal College of Nursing (RCN) Strategic Research Alliance and the Mesothelioma UK Research Centre.

Remote care delivery has become a routine aspect of clinical practice due to the covid-19 pandemic. To incorporate the necessary reliance on remote care delivery, multi-disciplinary teams have established different ways of working and partnerships, including increased reliance on nurse-led delivery of care. Preliminary surveys conducted by Cancer 52, Lung Cancer Nursing UK and Mesothelioma UK to explore the impact of the covid-19 pandemic have highlighted some particular benefits to remote care delivery for patients with rare and less common cancers and their families. Remote care delivery enables patients to attend appointments from home, reducing travel time and effort as well as current risk of exposure to covid-19. For these patients in particular, remote care delivery has the potential to improve access to specialist expertise and increased peer support.

What does your project aim to achieve?

This project aims to support clinical nurse specialists (CNSs) to embed the delivery of high quality remote care into clinical practice to improve the experiences of patients with rare or less common cancer and their families.

Research objectives:

1)     To evaluate the impact of remote care delivery on the experiences of patients with rare and less common cancers and their family members in terms of diagnosis, treatment and support.

2)     To determine the extent to which remote care delivery is being used in practice by CNSs

3)     To evaluate the benefits and challenges of delivering care remotely, as experienced by CNSs

4)     To support health care teams to embed and develop high quality nurse-led remote care delivery.

This project has the potential to improve the experiences of this group of patients who often feel isolated, in the shadow of more common cancers and lack peer support.

How will the project be delivered?

A mixed methods research design with two stages of data collection:

Stage 1:

·        A survey will be shared widely to patients with rare and less common cancers and their family members.

·        A second survey will be sent to CNSs working across a range of health care settings in the UK.

Stage 2: Interview data.

·        Semi-structured interviews will be conducted with patients (N=5), their family members (N=5) and CNSs (N=5).

·        Interview topic guides will be informed by survey findings and expand on issues that have arisen in the survey data.

·        Interviews will be conducted over the phone or using a virtual video platform (dependent on the participant’s choice).

An advisory group consisting of patients, their family members and health care professionals will be established and involved throughout the study. Recommendations will be co-produced with patients, their families and CNSs with graphic design support.

How is your project going to share learning?

We will share our learning by engaging with the Q community and other stakeholders associated through both research centres throughout this study

The study will co-produce evidence based recommendations with patients with rare and less common cancers, their families and CNSs. These recommendations will aim to support health care professionals to ensure high quality remote nurse-led care delivery when caring for and treating patients with rare and less common cancers and their families.

The recommendations will be disseminated via publication in an open access peer reviewed publication, at academic conferences and through our two national research centres; The Royal College of Nursing Strategic Research Alliance and Mesothelioma UK Research Centre and associated network of organisations.