“With This Disease, You Take Whatever Chances There Are”—A Study on Socio-Cultural and Psychological Aspects of Experiments  Regarding Huntington’s Disease

Lundin, Susanne; Torkelson, Eva; Petersen, Marsanna

doi:10.4236/ojmp.2016.54009

Cited by 3 publications

(3 citation statements)

References 27 publications

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“…It was planned on the basis of well proven mixed-methods research that provide insights into the fact that empirical data is multifaceted. Following Donna Haraway's ground-breaking studies (26), applied and further developed in both social and cultural sciences as well as natural disciplines in recent decades, we assume that data is produced through particular ways of seeing and experiencing the world and is best understood by methodological eclecticism applying techniques from multiple scienti c toolboxes (27)(28)(29)(30). Based on such a mixedmethods approach the planning of our study is not merely built on a protocol but rather on engaging in a process with unpredictable and unexpected results (31).…”

Section: Approach Methods and Analytical Strategiesmentioning

confidence: 99%

Medicine Knowledge and Purchasing Behaviour in a South African Township: Lessons Learnt From a Pilot Study on Awareness of Substandard and Falsified Medical Products

Lundin

Gosa³

et al. 2020

Preprint

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Background: Substandard and falsified (SF) medical products are available in informal as well as formal markets globally. South Africa has a large formal, regulated pharmaceutical sector but there has been limited attention to the existence of SF medical products and the risks posed to people in need of medication. Little is known about individuals’ medicine consumption behaviour, especially from a social sciences perspective. This study presents findings on knowledge and awareness of medicine risks amongst residents in a lower-income community in Khayamnandi in the Western Cape province of South Africa. We also reflect on challenges and lessons learnt from the data collection process.Results:Quantitative and qualitative data, using a mixed-methods approach, were collected from 41 adult (≥18 years) respondents through a survey and audio-recorded discussions around the survey questions. Comparison of the two types of data through bricolage and mixed-methods revealed inconsistencies in responses. We argue that multi-disciplinary research using a mixed-methods approach, including reflexivity regarding empirical observations, not only provides a broader knowledge, but that it also brings insights into the complex processes and ambivalent statements collected from research participants. In addition, research participants were not always open about their health-seeking behaviour and provider choices due to concerns about potential conflict of interests among different types of medical care providers in the local community. Conclusions:This is one of the few studies focusing on demand-side attitudes with regards to medicine purchasing behaviour and the potential risks this behaviour holds for the use of SF medical products in South Africa. Multi-disciplinary research using a mixed-methods approach can bring insights into the complex processes and ambivalent statements collected from research participants.

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Section: Approach Methods and Analytical Strategiesmentioning

confidence: 99%

Medicine Knowledge and Purchasing Behaviour in a South African Township: Lessons Learnt From a Pilot Study on Awareness of Substandard and Falsified Medical Products

Lundin

Gosa³

et al. 2020

Preprint

Self Cite

View full text Add to dashboard Cite

show abstract

“…Our take on the mixed-methods approach follows Donna Haraway's ground-breaking studies (Haraway, 1988) that have been applied and further developed in both social and cultural sciences, as well as natural disciplines, in recent decades. We underline that data is produced through specific ways of seeing and experiencing the world, and that it is best understood by methodological eclecticism by applying techniques from multiple scientific toolboxes Luke, 2005;Lundin, Torkelson & Petersen, 2016;Tashakkori & Teddlie, 2010;Teddlie & Tashakkori, 2012). Guided by this understanding, the planning of our study is not merely built on a pre-set and fixed protocol, but rather on engaging in a process to encounter the unpredictable and unexpected happenings (Wibberley, 2012).…”

Section: Research Design and Data Collectionmentioning

confidence: 99%

Medicine Across Borders: Exploration of Grey Zones

2023

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Medicine Across Borders provides an interdisciplinary space to discuss the issue of substandard and falsified medical products. Scholars from social and medical sciences collaboratively contribute insight to improving safe medicine access. The circulation of medicines and medical products on the informal market is well-known. Stakeholders, including governmental agencies and biotechnic enterprises, invest much effort in designing and implementing macrolevel interventions to limit the spread of such products. Nevertheless, there is a lack of knowledge and understanding of how informal markets function in everyday medicine access and use. This applies to professionals within and beyond academia, state governments, as well as the general public. This book takes an international perspective, examining the issue of substandard and falsified medical products cross nationally. Falsified and poor-quality medicines are prevalent in low- and middle-income countries, but this book also includes research from high-income countries arguing that they too have vulnerabilities, and emphasising the need for vigilance even in well-resourced and well-regulated regimes. Medicine Across Borders: Exploration of Grey Zones provides an interdisciplinary space for a depth and diversity of material that spotlights some contemporary themes hindering access to essential medicines and driving the penetration of substandard and falsified medical products. The authors are drawn from a range of academic disciplines across the social and medical sciences presenting findings from data collected using an eclectic mix of methods and analysis. Surveys, ethnography, narrative case studies, statistical, and thematic analysis are all deployed.

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“…In the folklife archives in Sweden, a multitude of narratives were collected about strategies for seeking cures from folk medicines for infertility, protection against life-threatening injuries, premature death and the like in the older peasant society (Tillhagen 1958). Over the past few decades, however, the internet and increasing globalization of information and markets have made visible previously unknown opportunities (Lundin, Torkelson & Petersen 2016). Purchases from global pharmaceutical markets may represent, as a lay respondent wrote, "voting with [one's] feet" due to the large price differences among different jurisdictions.…”

Section: Treatment As Servicementioning

confidence: 99%

"I'm not a jukebox where you push a button and then I sing": Negotiating Medicine Access in Physician–Patient Encounters

Lundin

Mirsalehi

et al. 2022

Ethnologia Europaea

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This article aims to deepen understandings of physician–patient encounters by investigating views and perceptions held by Swedish physicians and care seekers on medicine access. Through a relational approach and a focus on materialities of medicines as fluid and contingent, we conceptualize medicine access as situated everyday practices and physician–patient encounters as embedded in sociomaterial configurations. Through a bricolage approach, we present both quantitative and qualitative data from physicians and care seekers. We argue that diverging views on medicine access held by both parties do not necessarily position medical professional knowledge as opposed to lay knowledge. They are reflective of a shifting healthcare landscape and evolving expectations on provision and experiences of care services.

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“With This Disease, You Take Whatever Chances There Are”—A Study on Socio-Cultural and Psychological Aspects of Experiments Regarding Huntington’s Disease

Abstract: Although relatively rare, Huntington's disease (HD) has fatal consequences. There is no cure for the disease, which leads to an early death. Worldwide, scientists are trying to develop therapeutic methods that could cure the disease, including new molecular gene therapeutic methods.

Cited by 3 publications

References 27 publications

Medicine Knowledge and Purchasing Behaviour in a South African Township: Lessons Learnt From a Pilot Study on Awareness of Substandard and Falsified Medical Products

Medicine Knowledge and Purchasing Behaviour in a South African Township: Lessons Learnt From a Pilot Study on Awareness of Substandard and Falsified Medical Products

Medicine Across Borders: Exploration of Grey Zones

"I'm not a jukebox where you push a button and then I sing": Negotiating Medicine Access in Physician–Patient Encounters

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