This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference.

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

Background:There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness.Aim:The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group.Design:We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria.Results:This comprehensive literature review was consistent with previous research documenting the su...

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A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Background:Motor Neurone Disease (MND) is a neurodegenerative disease with a sudden onset, a rapid progression, a profile of complex disabilities and fatal consequences. Caring for a person with MND is an unremitting commitment, yet little research has examined the experiences and needs of carers for palliative care and bereavement care.Aim:This study explored the experiences of MND family carers, both during their time as carers and following bereavement. Particular attention was paid to the carers’ prolonged grief status and to the implications for service delivery, including palliative care.Design:A qualitative approach consisted of interviews with 16 bereaved family carers. The Prolonged Grief tool (PG-13) measured the carers’ prolonged grief.Setting/participants:sixteen family carers participated in the study, between one and four years after the death of their spouse from MND in Western Australia.Results:The thematic analysis of the interview transcripts revealed five themes – the work of family car...

Motor Neurone Disease family carers’ experiences of caring, palliative care and bereavement: An exploratory qualitative study:

Background Having nurses take on tasks that are typically conducted by doctors (doctor-nurse substitution, a form of ’task-shifting’) may help to address doctor shortages and reduce doctors’ workload and human resource costs. A Cochrane Review of effectiveness studies suggested that nurse-led care probably leads to similar healthcare outcomes as care delivered by doctors. This finding highlights the need to explore the factors that affect the implementation of strategies to substitute doctors with nurses in primary care. In our qualitative evidence synthesis (QES), we focused on studies of nurses taking on tasks that are typically conducted by doctors working in primary care, including substituting doctors with nurses or expanding nurses’ roles. Objectives (1) To identify factors influencing implementation of interventions to substitute doctors with nurses in primary care. (2) To explore how our synthesis findings related to, and helped to explain, the findings of the Cochrane intervention review of the effectiveness of substituting doctors with nurses. (3) To identify hypotheses for subgroup analyses for future updates of the Cochrane intervention review. Search methods We searched CINAHL and PubMed, contacted experts in the field, scanned the reference lists of relevant studies and conducted forward citation searches for key articles in the Social Science Citation Index and Science Citation Index databases, and ’related article’ searches in PubMed. Selection criteria We constructed a maximum variation sample (exploring variables such as country level of development, aspects of care covered and the types of participants) from studies that had collected and analysed qualitative data related to the factors influencing implementation of doctor-nurse substitution and the expansion of nurses' tasks in community or primary care worldwide. We included perspectives of doctors, nurses, patients and their families/carers, policymakers, programme managers, other health workers and any others directly involved in or affected by the substitution. We excluded studies that collected data using qualitative methods but did not analyse the data qualitatively. Data collection and analysis We identified factors influencing implementation of doctor-nurse substitution strategies using a framework thematic synthesis approach. Two review authors independently assessed the methodological strengths and limitations of included studies using a modified Critical Appraisal Skills Programme (CASP) tool. We assessed confidence in the evidence for the QES findings using the GRADE-CERQual approach. We integrated our findings with the evidence from the effectiveness review of doctor-nurse substitution using a matrix model. Finally, we identified hypotheses for subgroup analyses for updates of the review of effectiveness. Main results We included 66 studies (69 papers), 11 from low- or middle-income countries and 55 from high-income countries. These studies found several factors that appeared to influence the implementation of doctor-nurse substitution strategies. The following factors were based on findings that we assessed as moderate or high confidence. Patients in many studies knew little about nurses' roles and the difference between nurse-led and doctor-led care. They also had mixed views about the type of tasks that nurses should deliver. They preferred doctors when the tasks were more 'medical' but accepted nurses for preventive care and follow-ups. Doctors in most studies also preferred that nurses performed only 'non-medical' tasks. Nurses were comfortable with, and believed they were competent to deliver a wide range of tasks, but particularly emphasised tasks that were more health promotive/preventive in nature. Patients in most studies thought that nurses were more easily accessible than doctors. Doctors and nurses also saw nurse-doctor substitution and collaboration as a way of increasing people's access to care, and improving the quality and continuity of care. Nurses thought that close doctor-nurse relationships and doctor's trust in and acceptance of nurses was important for shaping their roles. But nurses working alone sometimes found it difficult to communicate with doctors. Nurses felt they had gained new skills when taking on new tasks. But nurses wanted more and better training. They thought this would increase their skills, job satisfaction and motivation, and would make them more independent. Nurses taking on doctors' tasks saw this as an opportunity to develop personally, to gain more respect and to improve the quality of care they could offer to patients. Better working conditions and financial incentives also motivated nurses to take on new tasks. Doctors valued collaborating with nurses when this reduced their own workload. Doctors and nurses pointed to the importance of having access to resources, such as enough staff, equipment and supplies; good referral systems; experienced leaders; clear roles; and adequate training and supervision. But they often had problems with these issues. They also pointed to the huge number of documents they needed to complete when tasks were moved from doctors to nurses. Authors' conclusions Patients, doctors and nurses may accept the use of nurses to deliver services that are usually delivered by doctors. But this is likely to depend on the type of services. Nurses taking on extra tasks want respect and collaboration from doctors; as well as proper resources; good referral systems; experienced leaders; clear roles; and adequate incentives, training and supervision. However, these needs are not always met. © 2019 The Cochrane Collaboration.

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Barriers and facilitators to the implementation of doctor‐nurse substitution strategies in primary care: a qualitative evidence synthesis

Approximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care. We integrated findings from three data sources – a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals. Three categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a ‘carer’ – preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person’s condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help. The needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.

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Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources

General practices in the United Kingdom are encouraged to have a protocol for the identification of carers and a mechanism for social care referral. However, a minority of carers are identified and those caring for someone with a terminal illness often cope until the situation becomes overwhelming. Earlier identification could enable more timely support. The aim of this project was to model and pilot a systematic approach to identify, assess and support carers of people with supportive and palliative care needs in primary care. The intervention was modelled on the Medical Research Council complex intervention framework with a preliminary theoretical phase, which has been reported elsewhere. In this study, which lasted 12 months, four general practices were recruited. Each practice identified a ‘carer liaison’ person to take the lead in identifying carers, followed by assessment and support using a toolkit modelled from the earlier phase. Qualitative evaluation interviews were conducted with carers who had received the intervention and the carer liaisons and general practitioners in the pilot practices. A stakeholder event was held to disseminate and deliberate the findings. The practices’ populations ranged from 5840 to 10832 patients and across the four practices, 83 carers were identified. Thirty six carers were identified from practice registers (disease - 16; palliative care - 9; carer - 11; advanced care plan - 12), whilst 28 were identified opportunistically by practice staff at appointments or at home. Seven carers self-identified. Overall, 81 carers received the carer pack and 25 returned the Carer Support Needs Assessment Tool (CSNAT) form. Eleven carers received a follow up call from the practice to discuss support and 12 were also referred/signposted for support. Qualitative interviews suggest carers valued connection with their practices but the paperwork in the toolkit was onerous. This approach to identifying and supporting carers was acceptable, but success was dependent on engagement within the whole practice. Carers did not tend to self-identify, nor ask for help. Practices need to proactively identify carers using existing opportunities, resources and computer systems, and also adopt a public health approach to raise carer awareness and perceived support within their communities.

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Piloting a new approach in primary care to identify, assess and support carers of people with terminal illnesses: a feasibility study.

Aims. To investigate how one aspect of anticipatory care is understood and delivered in practice. 'Anticipatory care' in this context can be understood as proactive care, which is oriented towards prevention of adverse events. Background. Scotland has identified the intention to move away from a preoccupation with acute care and invest in health improvement and anticipatory care. Community nurses are the key, yet little is known about how they understand and deliver anticipatory care. Methods. A qualitative case study design using individual in-depth interviews (n=10), observation (n=9) and focus groups (n=5) was selected. Five focus group interviews were carried out with district nurses, practice nurses and health visitors. Subsequently, nine observation events took place, each focused on a single nurse/client encounter. Data were collected during 2008 and 2009 in one Community Health Partnership in Scotland. Findings. Two approaches to anticipatory care emerged; these were influenced by participants' roles and responsibilities. Approach 1 derives from Government policy agenda and is focused on protocol-focused management of long-term illness. Approach 2 is synonymous with long-standing nursing activity focused on holistic care of individual patients. Both approaches are proactive in nature. Conclusions. There is scope to develop a more conceptually complex model of anticipatory care, building on this initial exploration, within which all aims, roles, practices and methods of evaluation can be located and clearly visible. This offers the potential to enable practitioners to interpret and apply policy - otherwise change may be limited and result in service gaps. © 2011 Blackwell Publishing Ltd.

Investigating the contribution of community nurses to anticipatory care: a qualitative exploratory study

The development of referral criteria has been seen as one of the keys to the proactive enhancement of the district nursing service to ensure equity and efficiency of service provision (Audit Commission, 1999). Referral criteria specify what constitutes an appropriate district nursing referral and who is the best person or service to undertake the care if it is not. With the continued focus of shifting the balance of care away from the hospital and into the community and a historically reactive rather than proactive work force, district nurses in Lothian, Scotland developed referral criteria for the service. This article discusses the drivers for the development of these criteria, how they were developed, and the anticipated difference implementation of the criteria would make to district nursing.

Referral criteria: making the district nursing service visible.

This paper outlines two challenges to community nurses as they work with unpaid carers. These reflect a changing culture in the way that health care will be delivered in the coming decade. The first of these challenges is a shift towards focusing on outcomes for both service users and adult carers. Outcomes evidence the impact a service has on a person's life. The second is the increasing focus on the concept of carers as partners in care.

Alison Jarvis

Papers

Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources

Piloting a new approach in primary care to identify, assess and support carers of people with terminal illnesses: a feasibility study.

Investigating the contribution of community nurses to anticipatory care: a qualitative exploratory study

Referral criteria: making the district nursing service visible.

Working with carers in the next decade: the challenges