Including older people in health and social care research: best practice recommendations based on the INCLUDE framework.

BACKGROUND: Older people are often explicitly or implicitly excluded from research, in particular clinical trials. This means that study findings may not be applicable to them, or that older people may not be offered treatments due to an absence of evidence. AIMS: The aim of this work was to develop recommendations to guide all research relevant to older people. METHODS: A diverse stakeholder group identified barriers and solutions to including older people in research. In parallel, a rapid literature review of published papers was undertaken to identify existing papers on the inclusion of older people in research. The findings were synthesised and mapped onto a socio-ecological model. From the synthesis we identified themes that were developed into initial recommendations that were iteratively refined with the stakeholder group. RESULTS: A range of individual, interpersonal, organisational, community and policy factors impact on the inclusion of older people in research. A total of 14 recommendations were developed such as removing upper age limits and comorbidity exclusions, involving older people, advocates and health and social care professionals with expertise in ageing in designing the research, and considering flexible or alternative approaches to data collection to maximise opportunities for participation. We also developed four questions that may guide those developing, reviewing and funding research that is inclusive of older people. CONCLUSION: Our recommendations provide up to date, practical advice on ways to improve the inclusion of older people in health and care research.

Best of Both Worlds Comment on "(Re) Making the Procrustean Bed? Standardization and Customization as Competing Logics in Healthcare".

This article builds on Mannion and Exworthy's account of the tensions between standardization and customization within health services to explore why these tensions exist. It highlights the limitations of explanations which root them in an expression of managerialism versus professionalism and suggests that each logic is embedded in a set of ontological, epistemological and moral commitments which are held in tension. At the front line of care delivery, people cannot resolve these tensions but must navigate and negotiate them. The legitimacy of a health system depends on its ability to deliver the 'best of both worlds' to citizens, offering the reassurance of sameness and the dignity of difference.

The emotional labour of boundary spanning.

PURPOSE: Within public services there is a widely recognised role for workers who operate across organisational and professional boundaries. Much of this literature focusses on the organisational implications rather than on how boundary spanners engage with citizens. An increased number of public service roles require boundary spanning to support citizens with cross-cutting issues. The purpose of this paper is to explicate the emotional labour within the interactions that boundary spanners have with citizens, requiring adherence to display rules and building trust. DESIGN/METHODOLOGY/APPROACH: This is a conceptual paper which draws on illustrative examples to draw out the emotional labour within two types of boundary spanning: explicit and emergent. FINDINGS: Emotional labour theory offers a way to classify these interactions as requiring high, medium or low degrees of emotional labour. Boundary spanning theory contributes an understanding of how emotional labour is likely to be differently experienced depending on whether the boundary spanning is an explicit part of the job, or an emergent property. ORIGINALITY/VALUE: Drawing on examples from public service work in a range of advanced democracies, the authors make a theoretical argument, suggesting that a more complete view of boundary spanning must account for individual-level affect and demands upon workers. Such a focus captures the "how" of the boundary spanning public encounter, and not just the institutional, political and organisational dimensions examined in most boundary spanning literatures.

Micro-provision of Social Care Support for Marginalized Communities - Filling the Gap or Building Bridges to the Mainstream?

As English social care services reconstruct themselves in response to the personalization agenda, there is increased interest in the contribution of micro-providers - very small community-based organizations, which can work directly with individuals. These micro-providers are assumed to be able to cater for the 'seldom heard' groups which have been marginalized within mainstream social care services. This article reviews recent literature from the UK published in peer-reviewed journals from 2000 to 2013 on support provision for people with protected characteristics under the Equality Act 2010. It considers the marginalising dynamics in mainstream, statutory social care support provision, and how far local community, specialist or small-scale services are responding to unmet need for support and advice among marginalized groups. The review found that there is a tradition of compensatory self-organization, use of informal networks and a mobilization of social capital for all these groups in response to marginalization from mainstream, statutory services. This requires recognition and nurturing in ways that do not stifle its unique nature. Specialist and community-based micro-providers can contribute to a wider range of choices for people who feel larger, mainstream services are not suitable or accessible. However, the types of compensatory activity identified in the research need recognition and investment, and its existence does not imply that the mainstream should not address marginalization.

Personalized commissioning, public spaces: the limits of the market in English social care services.

BACKGROUND: The article explores the implications of personal budgets within English social care services, which position the individual as market actor. Rooting the research in the broader personalization agenda, the study looks at the limitations of the market in relation to individual purchase of private goods (e.g. home care), in the pooling of funds to purchase group services and in the provision of public goods such as building-based services. METHOD: The article takes a multi-method approach, combining an interpretive focus on the framing of the personal budget-holder by advocates of personalization with national evaluation data, and data from a small survey of day centre workers. RESULTS: The article identifies three framings of the individual budget-holder articulated by advocates of personalization. The first is that personal budget-holders will be empowered market actors, commissioning the services they need. The second is that budget-holders will pool resources with others to purchase group services in order to broaden the range of options available to them. The third is that services which cannot be disaggregated into individual or group budgets - such as day centres - are not valued by service users. The article looks at the evaluation data on these three claims in turn. It identifies four limitations to the capacity of people to purchase care goods on an individual basis: lack of transparency in allocating budgets, complexity in managing a budget, excessive auditing of spending and lack of responsiveness from the provider market. Pooling of budgets to purchase collective services is found to be underdeveloped, and hampered by the complexity which is a broader limitation on personal budgets. Day centres are found to be closing not in response to commissioning decisions by individual budget-holders but because of decommissioning by local authorities, minimising the scope for individuals to express a preference for this type of care. The survey highlights patterns of day centre closure, rising fees for attendance and reduced eligibility, and the underdevelopment of mechanisms to facilitate commissioning of new collective spaces. CONCLUSIONS: The paper concludes that the transition to personal budgets - in the context of the accompanying financial crisis in local authorities - has led to inadequate attention to the potential for an undersupply of collective and public goods. The loss of day centre provision will be felt by personal budget holders but also by self-funders and people in residential accommodation who may no longer be eligible for, or able to afford, to access shared spaces. Local authorities are actively taking on the role of decommissioners without sufficient responsiveness to how and what individuals want them to commission.