Project PEOLC16

Carer Support Nurse Pilot

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 study explored the role's value and impact, and the feasibility of a larger study of how the role works across multiple sites.

Background

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 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 role is also designed to work with other healthcare providers to raise their awareness of carer needs and how to support them.

The Carer Support Nurse role was piloted for 12 months. Alongside this a study was conducted to explore the role’s value and impact by analysing data on (1) what the nurse did, and (2) the views of carers, patients, health and social care professionals, voluntary organisations, and the nurse herself. This involved collecting data from (1) the nurse (through a weekly diary and monthly interviews), (2) carers who had contact with the nurse (through a survey and interviews), (3) patients these carers supported (through interviews), and (4) health and social care professionals and voluntary organisations (through interviews and focus groups).

It developed 21 stakeholder-informed recommendations for whether, and how, the role could be introduced more widely, and the design of a future multi-site study.

Project Aims

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.

Project Activity

Stage 1: Stakeholder-operationalised Carer Support Nurse model and implementation strategies

  • Task 1) Asset-Based Mapping systematically identified pre-existing 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 was 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 completed a very brief templated Weekly Reflective Diary and CSNAT-I Activity Template (anonymised aggregated data on carer needs identified and types of actions taken). Monthly data-generating meetings monitored role delivery and identified/addressed emerging barriers. Monthly anonymised aggregated process data was provided by the site e.g., number and source of referrals.
  • Task 2) Carer outcomes and experiences of carers and patients: Carer baseline and outcome data were collected from adult carers who had contact with the nurse through a baseline and follow up postal survey, and interviews with a sub-sample of carers. Patients were also 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/interviews with key cross-sector colleagues explored the role’s delivery, value and impact (positive/negative).
  • Task 4) Establishing mechanisms of action and effect and recommendations: The findings were brought together to establish possible mechanisms of action and effect and  develop recommendations to inform sustainability and the design of a future multi-site study.
  • Task 5) Dissemination: The final report and executive summary are now available (see below). The findings will also be shared via a webinar and published in an academic/professional journal. We are harnessing 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’s commitment to supporting carers.

Outputs and impact

  • Final report, which includes:
    • Local carer asset-map
    • Stakeholder-optimised Carer Support Nurse model
    • Findings on Carer Support Nurse role impact (from multi-perspectives)
    • Evidence-based stakeholder-informed recommendations (to inform sustainability)
  • Executive summary
  • Lay summary
  • Cross-sector Consultative Community webinar
  • Manuscript for submission to academic/professional journal

Papers and resources

Read the related lay summary. Entitled 'Carer Support Nurse Study – End of Study Lay Summary'

Read the related report. Entitled ‘Evaluating the Carer Support Nurse Pilot Final report'

Read the related executive summary report. Entitled ‘Evaluating the Carer Support Nurse Pilot Final report – Executive Summary'

This project can be viewed in a case study format for easy accessibility

For more information about this research, read the ARC East of England blog

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)
PEOLC16