Serious Illness Care Programme North East
Research type
Research Study
Full title
Serious Illness Care Programme UK: National Implementation Programme, North East England
IRAS ID
303314
Contact name
Katherine Frew
Contact email
Sponsor organisation
Northumbria NHS Foundation Trust
Duration of Study in the UK
1 years, 0 months, 7 days
Research summary
Research Summary
In order to deliver high quality healthcare that is effective, safe and ‘person centred', health care services must actively involve patients, and their families, in decisions about their care. In North America, the Serious Illness Care Programme (the Programme) has been devised to improve communication between clinicians and adult patients with a serious illness, to ensure care provided is more ‘person centred’. The Programme combines education and training for clinicians in communication skills, and specifically in the implementation and use of a Serious Illness Conversation Guide. This guide includes prompts to help clinicians to have important conversations with patients who are nearing the end of life, covering issues such as: illness understanding, information preferences, prognosis, goals and values, fears and worries, priorities for future health care, and family involvement.
NHS England provided funding to adapt the Programme for use in the UK. Two
research studies were undertaken. One specifically to adapt the Serious Illness Conversation Guide prior to implementation, and another to assess the feasibility of implementation following adaptation of the UK Programme.
This project represents further, ongoing research and evaluation of the use of the Serious Illness Care Programme UK, at multiple implementation sites across the North East of England: this application specifically refers to implementation within Newcastle, Northumbria and Gateshead NHS Foundation Trusts.
The methods used will evaluate the use and experience of the Serious Illness Care Programme UK, as well as the impact of the conversation on quality of life and quality of communication.
The research/evaluation will assess use of the Serious Illness Care Programme on two levels:
• Organisational Level: Implementation and service improvement metrics to track use of the Programme within the organisation, including ‘reach’ metrics and ‘service flow’ data.
• Individual Level (patients and clinicians): use and experience of the Programme in practice, including acceptability:
- Questionnaire completion
- Qualitative interviews/focus groupsResults Summary
This study aimed to establish the patient and healthcare professional experiences of having and conducting serious illness conversations in different specialty groups across the NE England.
While limited patient recruitment, experiences were positive regarding the conversations which had taken place and, while very small sample sizes, indicate that the use of the serious illness conversation supported patients to express their views and preferences.
Healthcare professionals were consulted via survey and reported high levels of engagement with training and increasing confidence in approaching serious illness conversations after 6 months of using them.Limitations
Patient recruitment was more challenging than anticipated partly due to changes in service structures in response to the COVID 19 pandemic and also due to challenges in resources to support the research.
Staff recruitment was also more challenging due to short-notice changes to patterns of work and losing contact with staff due to shortages/redeployment and increasing clinical vs research responsibilities.REC name
West of Scotland REC 3
REC reference
21/WS/0123
Date of REC Opinion
4 Oct 2021
REC opinion
Favourable Opinion