Value and Impact of a Carer Support Nurse

NCT05753072 | Completed

• 1 other identifier: R211343
• Study Type: observational
• Target: 61
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Not Condition Specific

Keywords

unpaid carers; family carers; specialist nurse

Outcome Measures

Primary Outcomes (1)

• Carer Preparedness for Caregiving

  Preparedness for Caregiving Scale

  6 weeks

Secondary Outcomes (3)

• Carer wellbeing

  6 weeks

• Health-related quality of life

  6 weeks

• Carer resource use

  6 weeks

Interventions

Carer Support Nurse OTHER

Specialist community nursing role to support unpaid family/carers with complex health-related support needs or unresolved health-related support needs that cannot be met by their usual health care team

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Unpaid/family carers with complex health-related support needs or unresolved health-related support needs that cannot be met by their usual health care team

You may qualify if:

• Adult unpaid carers who have been referred to, or who have contacted (self-referral), the Carer Support Nurse

You may not qualify if:

• Unable to understand or communicate in English
• Serious mental health problem
• Unable to give informed consent

Sponsors & Collaborators

• University of East Anglia: lead
• Health Education England, Wessex: collaborator
• NIHR Applied Research Collaboration - East of England: collaborator
• UEA Health & Social Care Partners: collaborator
• University of Hertfordshire: collaborator
• London South Bank University: collaborator
• Norfolk & Waveney ICB: collaborator

Study Sites (1)

East Coast Community Health Care

Great Yarmouth, Norfolk, NR32 1DE, United Kingdom

Location

Related Publications (10)

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  BACKGROUND

• https://www.apollonursingresource.com/showing-how-i-spend-my-time/cassandra-app/

  BACKGROUND

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  PMID: 33658899 BACKGROUND

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  PMID: 2270302 BACKGROUND

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  PMID: 19228398 BACKGROUND

• https://warwick.ac.uk/fac/sci/med/research/platform/wemwbs/about/

  BACKGROUND

• https://euroqol.org/eq-5d-instruments/eq-5d-5l-about/

  BACKGROUND

• Feng YS, Kohlmann T, Janssen MF, Buchholz I. Psychometric properties of the EQ-5D-5L: a systematic review of the literature. Qual Life Res. 2021 Mar;30(3):647-673. doi: 10.1007/s11136-020-02688-y. Epub 2020 Dec 7.

  PMID: 33284428 BACKGROUND

• Malterud K, Siersma VD, Guassora AD. Sample Size in Qualitative Interview Studies: Guided by Information Power. Qual Health Res. 2016 Nov;26(13):1753-1760. doi: 10.1177/1049732315617444. Epub 2016 Jul 10.

  PMID: 26613970 BACKGROUND

• Ritchie J et al. Qualitative Research Practice. Sage 2003

  BACKGROUND

Related Links

• Carer Support Nurse pilot

Study Officials

• Morag Farquhar, PhD

  University of East Anglia (UEA)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: February 8, 2023
• First Posted: March 3, 2023
• Study Start: February 27, 2023
• Primary Completion: October 13, 2023
• Study Completion: October 13, 2023
• Last Updated: January 23, 2024

Record last verified: 2023-02

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)