2 results
Five - Using visual approaches with Indigenous communities
- Edited by Sue Oreszczyn, The Open University, Andy Lane, The Open University
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- Book:
- Mapping Environmental Sustainability
- Published by:
- Bristol University Press
- Published online:
- 05 April 2022
- Print publication:
- 06 September 2017, pp 103-128
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- Chapter
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Summary
Editors’ introduction
In this chapter we are told the story of longstanding and ongoing research on natural resource management working with Indigenous forest communities in South America. The authors included here represent the range of people that Andrea Berardi and Jay Mistry, as lead authors, have worked with over the years. Their biographies can be found at the front of this book and reading these is considered by the lead authors to be important for a full understanding of their research story. The authors consider their experiences, their challenges and the ethics involved in what they did. Like the other examples in this book, their research drew heavily from systems theories and, as with previous chapters, the authors describe the way that their research processes evolved over time. In this case, moving away from their quantitative origins and becoming increasingly more visual and inclusive over time. This chapter places diagramming within the wider context of visual approaches more generally. Going beyond diagramming, the authors explain how they developed visual techniques relevant for their particular context, including (and combining) video, drawings and photo stories as well as diagramming. Here they explain the way that their approach and use of visual techniques helped to strengthen the capabilities of marginalised people.
Introduction
For over 15 years, the authors of this chapter have been engaged with the Indigenous communities of the North Rupununi, Guyana, in working through complex natural resource management dilemmas. Over time, we have developed a critically reflective approach to collaborative research with Indigenous community members in order to evaluate the type of research methods and techniques we apply, to reposition power relationships in the research processes, and analyse the immediate and long-term impact of the research intervention on participants. Why do researchers and participants engage in the use of visual methods? What are their differential motivations and how does this affect decision making during the research process? Who participates in and benefits from this research? What is the role of technology? How are Indigenous people's rights and knowledges taken into account and advanced? How do visual methods contribute to transformative change and social justice? With what limits?
Health-related quality of life of patients with pulmonary arterial hypertension associated with CHD: the multicentre cross-sectional ACHILLE study
- Pascal Amedro, Adeline Basquin, Virginie Gressin, Pierre Clerson, Xavier Jais, Jean-Benoit Thambo, Patrice Guerin, Sarah Cohen, Damien Bonnet
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- Journal:
- Cardiology in the Young / Volume 26 / Issue 7 / October 2016
- Published online by Cambridge University Press:
- 16 March 2016, pp. 1250-1259
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- Article
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Background
The aim of this study was to assess health-related quality of life in patients with pulmonary arterial hypertension associated with CHD and correlations with clinical status.
MethodsThis prospective cross-sectional observational study included CHD patients with pulmonary arterial hypertension in 14 tertiary-care centres in France. We used two health-related quality of life questionnaires – SF-36 and Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) – and one anxiety/depression Hospital Anxiety and Depression Scale (HADS) questionnaire.
ResultsClinical data were collected for the 208 included patients (mean age: 42.6 years, range from 15.1 to 85.8 years, 69.7% female). Most patients were in NYHA functional class II (48.1%) and III (37.5%). Patients’ phenotype was classified as Eisenmenger syndrome (70.7%), pulmonary arterial hypertension associated with systemic-to-pulmonary shunts (12.0%), with small defects (3.4%), or after corrective cardiac surgery (13.9%). In total, 76.4% of the patients were receiving pulmonary arterial hypertension-specific treatments. SF-36 scores showed impairment compared with normalised data. Health-related quality of life scores were significantly lower in females than in males for most dimensions of both questionnaires and were independent of the patients’ phenotype, even after gender adjustment – except for CAMPHOR functioning – but significantly depended on NYHA functional class. The Hospital Anxiety and Depression Scale (HADS) scores suggested anxiety and depression associated with increasing NYHA functional class but independent of patients’ phenotype. NYHA functional class, 6-minute walk distance, HADS, gender, and recent stressful event significantly affected quality of life in the multivariate analysis.
ConclusionsThis study showed impairment of quality of life in a large cohort of patients with pulmonary arterial hypertension associated with CHD with both generic and specific questionnaires. NYHA functional class and HADS scores were predictive of most quality of life scores.