Suchergebnisse

AbstractWith the reflexive turn in the social sciences, emotional engagement is an inevitable and crucial part of data‐gathering and analysis. However, there is a glaring gap in methodological discussions to this end. Presenting ethnographic research into end of life with people living at home in England with heart failure, we argue for a methodological blend of engagement and detachment that shifts throughout the research process, and that sensory experience is a core part of engagement. We offer ethnographic examples which present and explore some alternatives to emotional engagement and objective detachment: (1) moving with participants to facilitate engagement during fieldwork through shared sensory experience; (2) detachment as a different way of relating when exiting the field and drawing participant relationships to a close; and (3) ethnographic closeness as the interplay of engagement and detachment in participant debriefing and data analysis. Based on well‐established anthropological concepts, and taking both engagement and detachment as embodied and relational, we develop a notion of ethnographic closeness in which detachment is a necessary part. Our detailed methodological discussion thus offers theoretically grounded possibilities and alternatives for approaching and managing the core tension of 'how close is too close?' in ethnographic practice. Further contributions supporting researchers in navigating ethnographic research are needed.

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long‐term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on 'self‐management', focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long‐term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political‐economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.

Laura Kelly,1 Caroline M Potter,1 Cheryl Hunter,2 Elizabeth Gibbons,1 Ray Fitzpatrick,1 Crispin Jenkinson,1 Michele Peters1 1Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, 2Academic Unit of Primary Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK Purpose: It is a key UK government priority to assess and improve outcomes in people with long-term conditions (LTCs). We are developing a new patient-reported outcome measure, the Long-Term Conditions Questionnaire (LTCQ), for use among people with single or multiple LTCs. This study aimed to refine candidate LTCQ items that had previously been informed through literature reviews, interviews with professional stakeholders, and interviews with people with LTCs. Materials and methods: Cognitive interviews (n=32) with people living with LTCs and consultations with professional stakeholders (n=13) and public representatives (n=5) were conducted to assess the suitability of 23 candidate items. Items were tested for content and comprehensibility and underwent a translatability assessment. Results: Four rounds of revisions took place, due to amendments to item structure, improvements to item clarity, item duplication, and recommendations for future translations. Twenty items were confirmed as relevant to living with LTCs and understandable to patients and professionals. Conclusion: This study supports the content validity of the LTCQ items among people with LTCs and professional stakeholders. The final items are suitable to enter the next stage of psychometric refinement. Keywords: long-term conditions, chronic conditions, cognitive debrief interviews, patient-reported

Dance is more than an aesthetic of life – dance embodies life. This is evident from the social history of jive, the marketing of trans-national ballet, ritual healing dances in Italy or folk dances performed for tourists in Mexico, Panama and Canada. Dance often captures those essential dimensions of social life that cannot be easily put into words. What are the flows and movements of dance carried by migrants and tourists? How is dance used to shape nationalist ideology? What are the connections between dance and ethnicity, gender, health, globalization and nationalism, capitalism and post-colonialism? Through innovative and wide-ranging case studies, the contributors explore the central role dance plays in culture as leisure commodity, cultural heritage, cultural aesthetic or cathartic social movement

Objective: The aim of this study was to validate a new generic patient-reported outcome measure, the Long-Term Conditions Questionnaire (LTCQ), among a diverse sample of health and social care users in England. Design: Cross-sectional validation survey. Data were collected through postal surveys (February 2016 - January 2017). The sample included a health care cohort of patients recruited through primary care practices, and a social care cohort recruited through local government bodies that provide social care services. Participants: 1,211 participants (24% confirmed social care recipients) took part in the study. Health care participants were recruited on the basis of having one of eleven specified LTCs, and social care participants were recruited on the basis of receiving social care support for at least one LTC. The sample exhibited high multi-morbidity, with 93% reporting two or more LTCs and 43% reporting a mental health condition. Outcome measures: The LTCQ's construct validity was tested with reference to the EQ-5D (5-level version), the Self-efficacy for Managing Chronic Disease scale, an Activities of Daily Living scale, and the Bayliss burden of morbidity scale. Results: Low levels of missing data for each item indicate acceptability of the LTCQ across the sample. The LTCQ exhibits high internal consistency (Cronbach's α = 0.95) across the scale's 20 items and excellent test-retest reliability (ICC = 0.94, 95% CI 0.93 to 0.95). Associations between the LTCQ and all reference measures were moderate to strong and in the expected directions, indicating convergent construct validity. Conclusions: This study provides evidence for the reliability and validity of the Long-Term Conditions Questionnaire, which has potential for use in both health and social care settings. The LTCQ could meet a need for holistic outcome measurement that goes beyond symptoms and physical function, complementing existing measures to fully capture what it means to live well with LTCs.