14 Dec 2022
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Improving support for unpaid carers: piloting a new carer support nurse role
Contributor Morag Farquhar, Professor of Palliative Care Research at University of East Anglia, introduces a new three-stage pilot scheme UEAHSCP are supporting which aims to improve support for carers.
According to Carers UK, carers provide unpaid care, help, or support to family members or friends with care needs. There were up to 9.1 million carers in the UK pre-Covid; the pandemic has added 4.5 million more. The personal care, practical and emotional support they provide is valued at £132 billion annually, reducing formal care costs. Added to this, many sources including The Lancet suggest there has been an unprecedented reliance on home care as one pillar of the health care system during the Covid-19 pandemic, while carers’ support needs have increased but access to care has reduced. However, carers can feel unprepared for the caring role and can lack confidence in it.[1] [2] [3] [4] [5] [6] [7]
This can cause anxiety and impact on their ability to ask for help [8] [9] which in turn, can impact on their ability to keep ‘caring’ if they wish to.
Many carers lack access to services,{2} {7} [10] remaining unnoticed or invisible[11] [12] until a crisis occurs.{1} {2} They can be ambivalent about their own needs, putting patients’ needs first, neglecting their own health.{10} [13] [14] Time-limited healthcare professionals similarly prioritise patient need.[15] [16] Added to this, carers’ support needs are exacerbated when caring is prolonged,[17] [18] when there is uncertainty or complexity,[19] and in marginalised communities at risk of unequal access to healthcare services.[20] [21] [22] [23]
Carers need support to look after their own health and wellbeing and boost their skills and confidence to care. National calls for improved carer support (see the NHS Long Term Plan, Royal College of General Practitioners, NICE guidelines on End of life care for adults, NICE guidelines on supporting adult carers, and the Department of Health and Social Care Carer’s Action Plan 2018-2020), include calls for new ways to identify and support carers, especially the most vulnerable such as those with their own health needs. A dedicated Carer Support Nurse role[24] (to support carers with complex needs and cross-skill other healthcare professionals) could help address this, ameliorating crises, and reducing patient and service impacts.
We have been working with carers, patients, health and social care professionals, voluntary organisations, and national and regional leaders in carer support, to develop this new dedicated Carer Support Nurse role. The 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 model best practice in how to support them.
Dedication to carers
Dedicating this new nursing role to carers is key due to:
- carers’ reluctance to “bother” healthcare professionals{1} {7}, particularly for non-emergencies2 10, during what they see as the “patient’s time”, and
- nurses’ difficulty supporting carers within their patient-led roles (due to limited time).{5} [25]
- A carer-dedicated role could legitimise carers’ help-seeking, overcoming their reluctance, and legitimise carer support for other healthcare professionals.
A nursing role
A nurse fulfilling the role is key as nurses have the knowledge and expertise required to support carers’ health-related support needs, particularly when complex.[26] [27] [28] [29] [30]
The holistic nature of nursing combines the required skills in need identification, physical and mental health assessment and support, self-care and case management at expert level.
Carers and patients have told us that a Carer Support Nurse would increase the likelihood of carers’ health-related support needs being identified, and therefore addressed, by giving carers “permission” to express them.
The Carer Support Nurse role is underpinned by five stakeholder-endorsed principles, which state that the role should be:
- community-based[31] [32]
- work across sectors (health, social and voluntary)
- engage marginalised communities {20} {21} {22} {23}
- provide person-centred care to carers (prioritising complex cases), identifying and addressing their health-related needs (both carer health and upskilling them to care), and
- cross-skill other healthcare professionals in best practice in carer support (distributes benefits for greatest impact)
A pilot Carer Support Nurse is now in post within East Coast Community Health Care (ECCH) funded by Norfolk & Waveney Integrated Care Board. UEA are leading on a three-stage study (with colleagues from London South Bank University and University of Hertfordshire) to explore the role’s value and impact. The study is funded by Health Education England (East of England) and supported by the NIHR’s Applied Research Collaboration East of England and UEA Health & Social Care Partners.
In Stage 1 we identified local, regional, and national resources to support carers (‘asset mapping’) and worked with stakeholders (carers, health and social care professionals, voluntary organisations) to develop an operational model for the role for the locality.
Stage 2 will start in the new year once the nurse’s caseload is established. This will involve collecting and analysing data on what the nurse does – through a weekly diary and monthly interviews, and system-level data – as well as gathering the experiences and views of:
- carers who have had contact with the nurse (through a survey and interviews)
- patients these carers support (through interviews), and
- health and social care professionals and voluntary organisations (through interviews and focus groups).
Finally, in Stage 3, we will develop recommendations for whether, and how, the role could be introduced more widely, and design of a future multi-site study to explore whether and how it works in differing localities. We plan to share these through a webinar and briefing document for stakeholders, as well as through publication in professional and academic journals.
The Carer Support Nurse role and the UEA-led study have been endorsed by:
- 70+ East of England stakeholders and groups consulted across health, social care and the voluntary sector
- over 100 carers and patients through Patient & Public Involvement (PPI) work, and
- regional and national leads in carer support.
The level and universality of enthusiasm has been remarkable, with lack of provision for carers’ health-related needs a repeated message. Patients emphasised to us their carers’ vital role but were concerned over carers’ lack of support from healthcare. Importantly, carers and patients have helped shape this project: they advised that the Carer Support Nurse role should be community-based and advised on how to recruit carers to the project. They welcomed continued engagement of carers and cross-sector stakeholders in the study going forward.
References:
[1] Booth S et al. Palliat Support Care 2003;1:337-44 [PMID:16594223]
[2] Spence A et al. Int J Palliat Nurs 2008;14:368-72 [PMID: 19023952]
[3] Gysels M et al. Palliat Support Care 2009;7:153-62 [PMID: 19538797]
[4] Bee P et al. J Clin Nurs 2009;18:1379-93 [PMID: 18624779]
[5] Gerrish K. Pri Health Care Res Dev 2008;9(1):14-24 [doi.org/10.1017/S1463423607000515]
[6] Harrop E et al. BMC Palliat Care 2014;13:22 [PMID: 24742046]
[7] Currow D et al. Int J COPD 2008;3(4):753-62 [PMID: 19281090]
[8] Whitehead B et al. Palliat Med 2012;26(4):368-78 [PMID: 21712334]
[9] Walsh K et al. Br J Psychiatry 2007;190:142-7 [PMID: 17267931]
[10] Bergs D. J Clin Nurs 2002;11(5);613-21 [PMID: 12201888]
[11] Cavaye J. Hidden Carers. Dunedin Press;2006
[12] Burns C et al. Palliat Med 2013;27(7):608-15 [PMID: 23587738]
[13] Williams L. Oncol Nurs Forum 2007;34(2):379-87 [PMID: 17573302]
[14] Doherty L et al. Eur J Cardiovasc Nurs 2016;15(4):203-12 [PMID: 25922473]
[15] Grande G et al. https://pubmed.ncbi.nlm.nih.gov/26719349/BMJ Support Palliat Care 2017;7 (3):326-34 [PMID: 26719349]
[16] Austin L et al. PLoS ONE 2017;12(6):e0179287 [PMID: 28622348]
[17] Morris S et al. Palliat Med 2015;29(6):487-95 [PMID: 25634635]
[18] Phillips L et al. Clin Nurs Res 2009;18(1):80-97 [PMID: 19208822]
[19] Funk L et al. Palliat Med 2010;24(6):594-607 [PMID: 20576673]
[20] Morelli N et al. Health Soc Care Community 2019;27(6):1363-74 [PMID: 31441179]
[21] Willis P et al. Br J Soc Work 2011;41(7):1304-20 [doi.org/10.1093/bjsw/bcr114]
[22] Carr S et al. Eur J Pub Health 2019;29(4):ckz187.140 [doi.org/10.1093/eurpub/ckz187.140]
[23] Greenwood N et al. Maturitas 2018;112:39-45 [PMID: 29704916]
[24] Farquhar M et al. Is it time to create a new nurse role dedicated to helping carers? Nurse Times 2017;113(9):39-41
[25] Carduff E et al. BMC Fam Prac 2014;15(1):48 [PMID: 24690099]
[26] Ewing G et al. J Pain Symp Manage 2013;46(3):395-405 [PMID: 23245452]
[27] Henderson V. The nature of nursing. Macmillan;1966
[28] Benner P. From novice to expert: Excellence and power in clinical nursing practice. Addison-Wesley;1984
[29] Benner P et al. Am J Nurs 1987;87(1):23-31 [PMID: 3642979]
[30] Thomas S et al. Health Serv Deliv Res 2017;5(12) [PMID: 28358458]
[31] Luker K et al. Eur J Oncol Nurs 2015;19(2):154-61 [PMID: 25667125]
[32] Horsfall D et al. Health Place 2017;46:58-64 [PMID: 28499149]
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