Families and friends play a crucial role supporting people they care for as their unpaid carers. However, they are not always well prepared for this, and it can damage their own health and wellbeing. This can impact their ability to keep ‘caring’. Carers often lack time to look after themselves, putting their own needs last. These needs tend to be hidden until crises. Carers need support to (1) look after their own health and wellbeing and (2) boost their skills and confidence to care. Healthcare policy says this should happen, but healthcare professionals can find this difficult alongside supporting the patient.
To address this, we have worked with carers, health and social care professionals, voluntary organisations and national leaders in carer support, to develop a new Carer Support Nurse role. This role is designed to help carers who have their own needs, or who need extra support for their caring role, that cannot be met by their usual healthcare team. The nurse will also work with other healthcare providers to raise their awareness of carer needs and how to support them.
The Carer Support Nurse is now in post. This study explores the role’s value and impact by analysing data on (1) what the nurse does, and (2) the views of carers, patients, health and social care professionals, voluntary organisations, and the nurse themself. This will involve collecting data from (1) the nurse (through a weekly diary and monthly interviews), (2) carers who have had contact with the nurse (through a survey and interviews), (3) patients these carers support (through interviews), and (4) health and social care professionals and voluntary organisations (through interviews and focus groups). It will also develop recommendations for whether, and how, the role could be introduced more widely, and the design of a future multi-site study.
To establish the value and impact of a stakeholder-optimised Carer Support Nurse role, stakeholder-informed recommendations for the role to inform sustainability, and the feasibility of a future wider multi-site implementation study if the role shows promise.
Stage 1: Stakeholder-operationalised Carer Support Nurse model and implementation strategies
- Task 1) Asset-Based Mapping will systematically identify current carer support activity in the locality within/across sectors through interviews with key stakeholders, informed by internet searching for local resources (confirmed through the interviews).
- Task 2) Stakeholder operationalisation of Carer Support Nurse role will be achieved through carer workshops, cross-sector provider workshops, and commissioner interviews
Stage 2: Evaluation of the Carer Support Nurse pilot
- Task 1) Carer Support Nurse role data capture: The nurse will complete a very brief templated Weekly Reflective Diary and CSNAT-I Activity Template (anonymised aggregated data on carer needs identified and types of actions taken) via Microsoft Forms. Monthly data-generating meetings will monitor role delivery and identify/address emerging barriers. Monthly anonymised aggregated process data will be provided by the site e.g., number of carers seen by the nurse, number of repeat contacts.
- Task 2) Carer outcomes and experiences of carers and patients: Carer baseline and outcome data will be collected from adult carers who have contact with the nurse through a baseline and follow up postal survey, and interviews with a sub-sample of carers. Patients will also be invited to take part in interviews.
- Task 3) Carer Support Nurse and cross-sector colleague experiences and impacts: End of study interviews with the nurse and their line manager (interviewed separately) and focus groups with key cross-sector colleagues will explore the role’s delivery, value and impact (positive/negative).
- Task 4) Establishing mechanisms of action and effect and recommendations: The findings will be brought together to establish mechanism of action and effect and inform any suggestions for optimising the operational model and develop recommendations to inform sustainability and the design of a future multi-site study.
- Task 5) Dissemination: The will share the findings via a webinar, briefing paper, and an academic/professional journal. We will harness established relationships with national leads in carer support (and work with NIHR ARC-EoE infrastructure and UEA Health & Social Care Partners) to identify and leverage national opportunities (e.g., Carers Week) and organisations (e.g., Carers UK) to promote the Carer Support Nurse role as a mechanism for delivery of the NHS commitment to carers. Negative or neutral findings and study learnings will be formulated into transferable knowledge for action to improve carer support.
- Local carer asset-map
- Stakeholder-optimised Carer Support Nurse model
- Findings on Carer Support Nurse role impact (from multi-perspectives)
- Findings on Carer Support Nurse resource and cost implications
- Evidence-based stakeholder-informed recommendations (to inform sustainability)
- Cross-sector Consultative Community webinar
- Cross-sector Consultative Community briefing paper (to inform a business case)
- Manuscript for submission to academic/professional journal
We will harness established relationships with national leads in carer support (and work with NIHR ARC-EoE infrastructure and UEA Health & Social Care Partners) to identify and leverage national opportunities (e.g., Carers Week) and organisations (e.g., Carers UK) to promote the Carer Support Nurse role as a mechanism for delivery of the NHS commitment to carers.
Who is involved?
- Prof Morag Farquhar (PI): Professor of Palliative Care Research, University of East Anglia (UEA); NIHR ARC EoE Palliative & End of Life Care theme
- Prof Alison Leary: Professor of Healthcare & Workforce Modelling, London South Bank University
- Roberta Lovick (PPI)
- Dr Guy Peryer: Research Fellow, University of East Anglia (UEA); NIHR ARC EoE Palliative & End of Life Care theme
- Dr Jennifer Lynch: NIHR Knowledge Mobilisation Research Fellow/Senior Research Fellow, Centre for Research in Public Health and Community Care, University of Hertfordshire
- Dr Adam Wagner: Health Economist, University of East Anglia (UEA); NIHR ARC EoE Health Economics and Prioritisation Theme
- Prof Susanne Lindqvist: Professor of Interprofessional Practice, University of East Anglia (UEA)
- Dr Carole Gardener: Study Senior Research Associate, University of East Anglia (UEA)
Papers and resources
Read more about the study here
Is it time to create a new nurse role dedicated to helping carers? Read Nursing Times article