An informal carer refers to someone who, “provides unpaid help and support to a partner, child, relative, friend or neighbour who could not manage without this help” (Beesley, 2006). Comparatively, people who choose to be carers have a higher quality of life than those who provide care as it is expected of them. Though health policies, legislation and professional guidance and research in the National Health Service (NHS) emphasise the need to identify carers and support their needs, it is unclear how this has been translated into practice. This blog discusses the study, “Enhancing primary care support for informal carers: A scoping study with professional stakeholders” (Peters et al., 2020), which explores the views of professional stakeholders, using scoping methods, to understand how primary care services can support carers and bridge the policy to practice gap in England.
The authors of the study used qualitative methods and very clearly outlined the study design and data analysis processes. They conducted semi-structured interviews with professional stakeholders and a scoping review of literature to inform the interview guide and questionnaire. Questions focused mainly on the participants’ views of the role of primary care and other health services in identifying and supporting carers. Interviews were conducted with policymakers, commissioners, front line clinicians, local authority staff and voluntary sector organisations. However, the majority of stakeholders interviewed were general practitioners (GPs) or nurses from different parts of England.
Participants were recruited through a combination of convenience sampling (this refers to participants who were known to the researchers through previous collaborations or belonging to the researchers’ existing networks) and snowball sampling (this refers to participants who have an interest in the topic and have publicly available contact details). Interviews were conducted mainly by telephone (n=21) or face-to-face (n=3). 24 interviews with 25 participants (2 stakeholders participated in a joint interview) were conducted between December 2016 and March 2017. Each interview was audio-recorded (following informed consent), transcribed verbatim and lasted approximately 42 minutes on average.
Based on the findings from the semi-structured interviews, the authors identified three main themes. These are summarised below:
1. Identifying carers
This theme focused on barriers to identifying carers and suggested some solutions to address these issues. Some barriers included (but not were not limited to) people not self-identifying as a carer, the lack of mechanisms in place to identify carers, carers being low on the healthcare agenda or carer information not being shared due to IT systems not being linked. Some proposed solutions to overcome these barriers included primary care asking people in their register if they are a carer or asking people with long-term conditions, frailty or disabilities if they have a carer.
2. Supporting carers
This theme focused on how primary care could be involved in supporting carers, how it could collaborate with other services and organisations, and reflected on potential barriers to doing so. Many participants agreed that primary care currently does not do enough to support carers and recognised that support for carers was left primarily to social care. Many participants also indicated that this was a call to integrate systems, thus promoting a “whole systems” approach to support carers. Broadly, a “whole systems” referred to integrating primary care, hospitals (including A&E services), local authority social services and the voluntary sector. Some participants included community organisations or institutions such as the police or fire departments in their definition. Within this system, all professionals would be expected to think about ways to identify and support carers. For example, one participant said:
… We’ve done some work in partnership with the Fire Brigade over the last year or so, looking at, when they do their safe and well checks in people’s homes, they’ve actually managed to identify a lot of older carers by going into people’s homes. So actually, there’s a lot about partnership working with different organisations and thinking about who is likely to have contact with different people…
(Participant 10, Policy and commissioning)
3. Assessing and addressing carer needs
The last theme focused on implementing systems to respond to carers’ needs. Many participants indicated that a simple self-assessment questionnaire could be implemented in primary care services. This assessment could be a potential means of communication with carers, such as providing them with information about flu jabs, health checks or using the assessment to identify unmet need and signposting carers to other services accordingly. The participants also reflected on the potential barriers to achieving this and recognised organisational, cultural and structural barriers to implementing such measures in primary care.
Recognising that the health status of many carers is often poorer in comparison with many primary care users without caring responsibilities, health care professionals were supportive of a more proactive approach to supporting the needs of carers. This was inclusive of primary care having a more integrated approach to identifying carers and addressing their needs, in collaboration with other health care services or voluntary sector organisations.
Strengths and limitations
The strength of this study is that it incorporates a broad range of perspectives in the participant sample. This is very helpful as it includes both clinicians and non-clinicians, all involved in various aspects of primary and social care. Such diversity gives credit to the study findings, as various participants reflected on the feasibility of implementing changes in primary care.
Unfortunately, this study does not include viewpoints of service users or carers, though the authors acknowledge this as a limitation. Including service users or carers’ views in interviews would have enriched the findings of this study, and likely also yielded some findings on any sociocultural cultural barriers that carers face, thus affecting their access to care or willingness to identify as a carer.
Implications for practice
This study demonstrates that primary care is a crucial first point of contact, and that it can have a strong and effective role in identifying and supporting carers. However, many participants in the study highlighted some uncertainties about the feasibility of implementing support services in primary care, given that most primary care services are overstretched. Additionally, participants also highlighted that the proposed solutions would require professional staff to be trained. As such, the authors conclude that there is a strong need for pilots and additional experiments to develop the evidence base.
Conflict of interests
Original paper link
Peters, M., Rand, S., & Fitzpatrick, R. (2020). Enhancing primary care support for informal carers: A scoping study with professional stakeholders. Health & social care in the community, 28(2), 642–650. https://doi.org/10.1111/hsc.12898
Beesley, L. (2006). Informal care in England. Wanless social care review: Retrieved from London: https://www.kingsfund.org.uk/sites/defau lt/files/informal-care-england-wanless-background-paper-lucinda- beesley2006.pdf
Photo by Jack Finnigan on Unsplash