Genetic variations in human ATP2B4 gene alter Plasmodium falciparum in vitro growth in RBCs from Gambian adults.

BACKGROUND: Polymorphisms in ATP2B4 coding for PMCA4b, the primary regulator of erythrocyte calcium concentration, have been shown by GWAS and cross-sectional studies to protect against severe malaria but the mechanism remains unknown. METHODS: Using a recall-by-genotype design, we investigated the impact of a common haplotype variant in ATP2B4 using in vitro assays that model erythrocyte stage malaria pathogenesis. Ninety-six donors representing homozygote (carriers of the minor allele, C/C), heterozygote (T/C) and wildtype (T/T) carriers of the tagging SNP rs1541252 were selected from a cohort of over 12,000 participants in the Keneba Biobank. RESULTS: Red blood cells (RBCs) from homozygotes showed reduced PMCA4b protein expression (mean fluorescence intensities (MFI = 2428 ± 124, 3544 ± 159 and 4261 ± 283], for homozygotes, heterozygotes and wildtypes respectively, p < 0.0001) and slower rates of calcium expulsion (calcium t½ ± SD = 4.7 ± 0.5, 1.8 ± 0.3 and 1.9 ± 0.4 min, p < 0.0001). Growth of a Plasmodium falciparum laboratory strain (FCR3) and two Gambian field isolates was decreased in RBCs from homozygotes compared to heterozygotes and wildtypes (p < 0.01). Genotype group did not affect parasite adhesion in vitro or var-gene expression in malaria-infected RBCs. Parasite growth was inhibited by a known inhibitor of PMCA4b, aurintricarboxylic acid (IC50 = 122uM CI: 110-134) confirming its sensitivity to calcium channel blockade. CONCLUSION: The data support the hypothesis that this ATP2B4 genotype, common in The Gambia and other malaria-endemic areas, protects against severe malaria through the suppression of parasitaemia during an infection. Reduction in parasite density plays a pivotal role in disease outcome by minimizing all aspects of malaria pathogenesis. Follow up studies are needed to further elucidate the mechanism of protection and to determine if this ATP2B4 genotype carries a fitness cost or increases susceptibility to other human disease.

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

BACKGROUND: 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. METHOD: 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. RESULTS: 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. CONCLUSION: 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.

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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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

Working with carers in the next decade: the challenges.

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.

A ward without walls? District nurses' perceptions of their workload management priorities and job satisfaction.

AIM: To explore district nurses' workload management, job satisfaction and the challenges they face. BACKGROUND: This paper reports qualitative findings from a qualitative and quantitative study to identify a district nursing perspective on use of time, challenges and work satisfaction. District nursing is under increasing pressure because of the increasing shift to care in the community, early hospital discharge and changes in demography with an ageing population and more people with chronic illnesses. DESIGN: Qualitative. METHOD: The study took place in one Scottish Health Board and data were collected in February and March 2005. The qualitative approach involved a total of 31 district nurses and senior managers in focus group discussions or individual interviews. RESULTS: Three main themes were identified: (1) the priorities of district nurses and their views on work unrelated to 'hands on' clinical care, (2) aspects of district nursing considered stressful and (3) district nurses' job satisfaction. CONCLUSION: District nurses and managers agree that caring work with patients is the priority for the service and provides job satisfaction. Many nurses feel overwhelmed by their workload and have little control over the admission of patients to their caseload; they are mainly demand led and therefore reactive care providers. A culture of long hours has developed as district nurses struggle to meet the needs of patients. Feeling devalued lowers satisfaction and Agenda for Change is perceived as de-valuing the skills of community nurses. RELEVANCE TO CLINICAL PRACTICE: More clerical support is required so district nurses can deliver care to patients. District nurses can better represent their workload and how it is managed through expressing the nature of assessing risk and caring for patients as opposed to defining patients care needs by medical diagnoses. Extending the hours of the full district nursing service would benefit patients and staff.

Carers' health clinic initiative in Edinburgh: pilot evaluation.

Unpaid carers see the Primary Health Care Team as an important source of help, information and support. A pilot Carers' Health Clinic to address the health needs of carers was set up in South West Edinburgh. The Clinic offered carers an assessment of their own health needs and information on a range of support services available to them including referral to a stress management therapist, if appropriate. Although physical health problems identified were mainly minor, the clinic findings indicate that many carers experienced emotional costs which they perceived to have an impact on their health. The Carers' Health Clinic pilot was a successful model, targeting carers who had not previously been in touch with carer support organizations and improving the awareness of carers of their own health needs.

The experience of caring for someone over 75 years of age: results from a Scottish General Practice population.

AIMS AND OBJECTIVES: To understand the unpaid carers' experiences of looking after someone aged over 75 at all stages of their caring career. BACKGROUND: The role of, and support for, unpaid carers have become central in the debates surrounding community care in the UK. This paper presents the findings of a study to elicit the complexities of the caring role and inform the Primary Health Care Team to help support carers more effectively. DESIGNS AND METHODS: A quantitative research design was employed. Carers of people over 75 years of age in a General Practice, who had been previously identified from a screening questionnaire, were sent the Carers Assessment of Difficulties Index, the Carers Assessment of Satisfactions Index and Carers Assessment of Managing Index questionnaires which examine the experience of caring. RESULTS: From a sample of 247 carers, a 70% response rate (n = 172) was achieved. Satisfactions lay in the quality of care provided; difficulties reflected the potential and actual family tensions generated; coping strategies included reframing difficulties, using humour and practical problem solving. The data show that caregivers' reactions, such as feeling angry about the situation, or the consequences of their involvement, such as tensions within the family, cause them more difficulties than the actual care-giving tasks they perform. CONCLUSION: This study adds to the understanding of carers' roles by including carers across a range of situations, including those at an early stage of their caring career. Service providers are better able to support carers if they understand the complex interplay of difficulties, rewards and personal coping strategies associated with the caring role. RELEVANCE TO PRACTICE: The study helps illuminate the less obvious, but important, emotional aspects of carers' difficulties and suggests strategies which service providers may find helpful in assessing carers' needs and determining the appropriate interventions.

Referral criteria: making the district nursing service visible.

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.

Meeting carers' information needs.

Unpaid carers provide the backbone for community care, supplying the everyday support and care to users which paid carers would otherwise have to provide. There is increasing political awareness about the need to support carers if the rhetoric of community care is to be a reality. Both research and policy documents emphasise the carer's need for information. Carers see the Primary Health Care Team as being pivotal in providing them with advice, support and information. This paper describes a study to identify carers in a general practice and to provide them with information. A large scale mailed survey of all adults in the practice was used to identify carers who were then asked if they wanted a pack of local information. Of the patients who responded, 6% identified themselves as a carer and of these, 63% requested information.

The development of a screening tool to identify carers in a general practice by a large-scale mailed survey: the experience in one Scottish general practice.

AIMS AND OBJECTIVES: To determine the feasibility of a screening tool to identify carers in a general practice. BACKGROUND: The need to support informal carers is well established in policy and practice, but many carers continue to lack the support they need. Identifying carers is a fundamental precondition to providing them with support. Studies often recruit carers who are members of carers' organizations or via the care recipient in receipt of services. However, as nearly 60% of carers receive no support from the statutory services, this group of carers may not be representative of the majority of carers. This paper describes the results of a study undertaken to identify a broader group of carers in a general practice in a large Scottish city. DESIGN AND METHODS: A quantitative research design was employed using a mailed screening survey to identify carers within a general practice. Carers were systematically identified, independent of the care recipient, using a screening tool developed by the researcher which was sent to all adult patients registered with the practice. RESULTS: The response rate was 69%. Overall, 11% of the surgery population identified themselves as carers with a mean age of 55 years. The carers were involved in a range of caring activities of varying levels and duration. CONCLUSION: The screening exercise was time consuming and costly. However, it would be feasible and useful to identify carers in smaller groups. RELEVANCE TO PRACTICE: This study tackles issues that are pertinent to health policy and practice. Carers were systematically identified from a general practice population and included those at an early stage of the caring role, prior to being involved with service providers, as well as those established in their role. If carers are identified early in their caring career the primary health care team is more able to support them proactively.

The recognition and support of carers.

Many carers are isolated and GP surgeries are often their first point of contact for support and resources. This article describes the role of a carer support and development worker, whose aim is to provide the support carers need.