Accessible summary• Many researches now include people with learning disabilities, which is really positive, but people with profound and multiple learning disabilities are often left out.• It is important to include people with profound and multiple learning disabilities in research to make sure all voices are represented.• This article talks about how a research method called photovoice can be used to include people with profound and multiple learning disabilities. AbstractBackground: It is now expected that projects addressing the lives of people with learning disabilities include people with learning disabilities in the research process. In the past, such research often excluded people with learning disabilities, favouring the opinions of family members, carers and professionals. The inclusion of the voices of people with learning disabilities is a welcome and much needed change. While there has been many valuable inclusive researches carried out in the past 10-15 years, much of this research has included people with mild and/or moderate learning disabilities. Far less published research has included people with profound and multiple learning disabilities. Materials and Methods: This research article outlines how the visual method 'photovoice' can be successfully used to include people with profound and multiple learning disabilities in the research process. Results and discussion: It is argued that inclusive research is often limited by the choice of research methods, which result in the exclusion of people with profound and multiple learning disabilities from the research process. The article advocates a mediated and flexible approach to inclusive research that embraces and supports the needs of all involved. A practical example of photovoice research with people with learning disabilities demonstrates how this can be achieved. Conclusion: When planning inclusive research, researchers should be mindful of both the variety of needs that people with learning disabilities can bring to the research process and the need to tailor methods to these needs. Such action requires a flexible approach to the inclusive research process.Keywords Inclusive research, photovoice, profound and multiple learning disability ª
Summary A complexity-informed approach has recently been proposed as a hopeful revolution for health promotion (HP), requesting appropriate ways of tackling the complexities of health, equity and well-being. In addition, co-creation has gained traction as an approach to tackle complexity. HP and co-creation are established concepts that have long been enacted in practice. Although each concept is premised on similar approaches to value-creation such as participation and collaboration, little has been done to link the two approaches. To advance complexity-informed HP, this scoping review presents findings from peer-reviewed articles, published in English, between 2009 and March 2020. Articles were identified through searches of academic databases. Twenty-seven articles met the inclusion criteria, explicitly linking HP and co-creation. Included articles were charted by descriptive information and main focus, and advanced by a thematic analysis. Four themes suggest a potential avenue for advancing complexity-informed HP: (i) dealing with complexity, (ii) value creation, (iii) the value of the values and (iv) benefits and challenges. While current links between HP and co-creation are scarce they are increasing and promising. Based on the findings from the review, propositions to advance complexity-informed HP is outlined and discussed. Overall it is argued that co-creation and HP are mutually beneficial concepts, providing a framework for participative, collaborative, context-sensitive and knowledge-based practice that reflects the complex nature of health. More research is needed to highlight potential and challenges of integrating co-creation in HP, especially related to health equity and sustainable development.
Accessible summary: “Learning disability” replaced the outdated term, “mentally handicapped” in the UK over 20 years ago. Recently, some services and professionals have been using the term “intellectual disability” instead. In America, “intellectual disability” has been chosen to replace the old term, “mental retardation.” There has been lots of explanation why this has happened. In the UK, there has not been much explanation. It is important to know what terms mean and why they are being used because their use affects the lives of people with learning disabilities. This article looks at what different people in the UK think about term “intellectual disability.” Abstract BackgroundThe term “intellectual disability” is increasingly used to refer to people with learning disabilities in British learning disability policy, practice and research. This change is undoubtedly a reflection of the changing international context. The inclusion of the term “intellectual disability” has been particularly pronounced in countries such as the USA. By contrast, this change has been relatively silent in England. MethodsIn light of this, the paper explores the discussions of 12 focus groups conducted with professional and lay groups working in or influencing learning disability research and practice in England. Each focus group was asked the following two questions: Have you heard of the term “intellectual disability” and how do you feel about the term “intellectual disability?.” Discussion and ConclusionThematic analysis of the discussions identified four dominant themes: dislike and disbelief; ambiguity; tautology; and fear. It is concluded that more explanation is required in order for researchers and practitioners in England to understand this semantic change.
In the past decade, frailty research has focused on refinement of biomedical tools and operationalisations, potentially introducing a reductionist approach. This article suggests that a new horizon in frailty lies in a more holistic approach to health and illness in old age. This would build on approaches that view healthy ageing in terms of functionality, in the sense of intrinsic capacity in interplay with social environment, whilst also emphasising positive attributes. Within this framework, frailty is conceptualised as originating as much in the social as in the biological domain; as co-existing with positive attributes and resilience, and as situated on a continuum with health and illness. Relatedly, social science-based studies involving interviews with, and observations of, frail, older people indicate that the social and biographical context in which frailty arises might be more impactful on the subsequent frailty trajectory than the health crisis which precipitates it. For these reasons, the article suggests that interpretive methodologies, derived from the social sciences and humanities, will be of particular use to the geriatrician in understanding health, illness and frailty from the perspective of the older person. These may be included in a toolkit with the purpose of identifying how biological and social factors jointly underpin the fluctuations of frailty and in designing interventions accordingly. Such an approach will bring clinical approaches closer to the views and experiences of older people who live with frailty, as well as to the holistic traditions of geriatric medicine itself.
Value and how it is produced/created in public service organizations (PSOs) represents a current and significant issue for those researching and working in public sector management as well as public service users. Recently it has been suggested that value in PSOs is created rather than co-produced through a relationship between the service user and the service provider based on the service user’s wider life experience. Importantly, this definition shifts the emphasis from the PSO (the focus of value co-production) to the PSO service user and their wider life experience. This is by no means an agreed conceptualization; there are many and varied definitions of value and its creation process. In this article, we develop a philosophical foundation for the value creation process in PSOs, something we argue is fundamentally missing from current conceptualizations. To do this, we draw on the work of Deleuze and Guattari, repositioning the basis of value co-creation from a service logic to a logic of assemblage. We then apply this framework to a practical example of public service use to show how it can be used to make sense of reality.
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