Mapping the information-coping trajectory of young people coping with long term illness: An evidence based approach

Purpose - Purpose: We explore the relationship between information and coping information from the experiences of young people coping with long term illness. Design/methodology/approach - Methodology: Situational Analysis was used as a methodological approach. It has roots in the Chicago Symbolic Interactionism School. Cartographic approaches enabled the analysis, mapping the complexities emerging from the data. Findings - Findings: As the young people became more informed about their health conditions, and gained knowledge and understanding both about their illnesses, their own bodies and boundaries, their confidence and capacity to cope increased. Gaining confidence, the young people often wanted to share their knowledge becoming information providers themselves. From the data we identified five positions on an information-coping trajectory (1) Information deficiency (2) Feeling ill-informed (3) Needing an injection of information (4) Having information health and (5) Becoming an information donor. Research limitations/implications - Research limitations/implications: The research was limited to an analysis of thirty narratives. The research contributes to information theory by mapping clearly the relationship between information and coping. Originality/value - Originality/value: The information theories in this study have originality and multi-disciplinary value in the management of health and illness, and information studies

Coping with Extreme Events: Institutional Flocking

Recent measurements in the North Atlantic confirm that the thermohaline circulation driving the Gulf Stream has come to a stand. Oceanographic monitoring over the last 50 years already showed that the circulation was weakening. Under the influence of the large inflow of melting water in Northern Atlantic waters during last summer, it has now virtually stopped. Consequently, the KNMI and the RIVM estimate the average . In this essay we will explore how such a new risk profile affects the distribution of risks among societal groups, and the way in which governing institutions need to adapt in order to be prepared for situations of rapid but unknown change. The next section will first introduce an analytical perspective, building upon the Risk Society thesis and a proposed model of ‘institutional flocking’.temperature to decrease by 3°C in the next 15 years

Uncertainty and risk: politics and analysis

In environmental and sustainable development policy issues, and in infrastructural megaprojects and issues of innovative medical technologies as well, public authorities face emergent complexity, high value diversity, difficult-to-structure problems, high decision stakes, high uncertainty, and thus risk. In practice, it is believed, this often leads to crises, controversies, deadlocks, and policy fiascoes. Decision-makers are said to face a crisis in coping with uncertainty. Both the cognitive structure of uncertainty and the political structure of risk decisions have been studied. So far, these scientific literatures exist side by side, with few apparent efforts at theoretically conceptualizing and empirically testing the links between the two. Therefore, this exploratory and conceptual paper takes up the challenge: How should we conceptualize the cognitive structure of uncertainty? How should we conceptualize the political structure of risk? How can we conceptualize the link(s) between the two? Is there any empirical support for a conceptualization that bridges the analytical and political aspects of risk? What are the implications for guidelines for risk analysis and assessment

Lived experiences of informal caregivers of people with chronic musculoskeletal pain: a systematic review and meta-ethnography

BACKGROUND: People with chronic pain often seek support from friends and family for everyday tasks. These individuals are termed informal caregivers. There remains uncertainty regarding the lived experiences of these people who care for individuals with chronic musculoskeletal pain. The aim of this paper is to synthase the evidence on the lived experiences of informal caregivers providing care to people with chronic musculoskeletal pain. METHODS: A systematic literature review was undertaken of published and unpublished literature databases including: EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials.gov registry (to September 2019). Qualitative studies exploring the lived experiences of informal caregivers of people with chronic musculoskeletal pain were included. Data were synthesised using a meta-ethnography approach. Evidence was evaluated using the Critical Appraisal Skills Programme (CASP) qualitative appraisal tool. RESULTS: From 534 citations, 10 studies were eligible (360 participants: 171 informal caregivers of 189 care recipients). The evidence was moderate quality. Seven themes arose: the relationship of caregivers to healthcare professionals, role reversal with care recipients; acting the confidant to the care recipient; a constant burden in caregiving; legitimising care recipient’s condition; knowledge and skills to provide caregiving; and the perception of other family members and wider-society to the caregiver/care recipient dyad. CONCLUSIONS: The lived experiences of caregivers of people with chronic musculoskeletal pain is complex and dynamic. There is an inter-connected relationship between caregivers, care recipients and healthcare professionals. Exploring how these experiences can be modified to improve a caregiving dyad’s lived experience is now warranted

Community Self-Organisation from a Social-Ecological Perspective: ‘Burlang Yatra’ and Revival of Millets in Odisha (India)

In this paper, I focus on the revival of an Indigenous community seed festival known locally as Burlang Yatra (‘Indigenous Biodiversity Festival’) in the district of Kandhamal in Odisha (India). This annual event brings together millet farmers to share knowledge and practices, including exchange of Indigenous heirloom seeds. Such community seed festivals remain largely underappreciated (and underexplored). Investigating Burlang Yatra through a social-ecological lens allowed for a greater understanding of its capacity to build and strengthen relationships, adaptation, and responsibility, three key principles that together link the social and the ecological in a dynamic sense. These principles, driven by intergenerational participation and interaction as well as social learning, can be seen as fostering ‘social-ecological memory’ of millet-based biodiverse farming. The festival’s persistence and revival illustrate a form of grassroots self-organising that draws on values of an Indigenous knowledge system. Within a restorative context, it has the capacity to repair and restore cultural and ecological relationships that the community has with their own foods and practices. This paper offers a new understanding of community self-organising from a social-ecological perspective and particularly in a marginalised context as supporting the revitalisation of Indigenous food systems