scholarly journals Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study

2020 ◽  
Vol 7 (1) ◽  
pp. 158-164
Author(s):  
Thomas Hughes ◽  
Mikkel Brok-Kristensen ◽  
Yosha Gargeya ◽  
Anne Mette Worsøe Lottrup ◽  
Ask Bo Larsen ◽  
...  
Keyword(s):  
Everyday Life ◽  
Mental Models ◽  
Health Care Professionals ◽  
Large Scale ◽  
Participant Observation ◽  
Field Research ◽  
Ethnographic Study ◽  
Theory Approach ◽  
Structured Interviews ◽  
Daily Lives

AbstractBackgroundWith the major advances in treatment of haemophilia in recent decades, people with haemophilia (PwH) are more protected in their daily lives than ever before. However, recent studies point to persisting or increasing patient experience of uncertainty.AimsThe aim of this article is to further investigate findings related to how PwH understand and cope with uncertainty around their protection in their everyday life, one of the main themes identified in a large-scale ethnographic study of the everyday life of PwH, including beliefs and experiences related to their condition, their treatment, and their personal ways of managing the condition.MethodsThe study used ethnographic research methods. Five haemophilia experts provided historical and disease area context prior to the initiation of field research. During field research, study researchers collected data through 8–12 hours of participant observation, semi-structured interviews, written exercises, facilitated group dialogues, and on-site observations of the interactions of PwH with friends, family, and health care professionals (HCPs). Study researchers also conducted on-site observation at haemophilia treatment centres (HTCs) and interviewed HCPs. The study employed a multi-tiered grounded theory approach and combined data were analysed using techniques such as inductive and deductive analysis, cross-case analysis, challenge mapping, and clustering exercises. This article explores findings related to uncertainty and thus focuses on a subset of the data from the study.ResultsFifty-one PwH in Italy, Germany, Spain, UK, and Ireland were interviewed and followed in their daily lives, and 18 HCPs were interviewed. Fifty-two per cent (n=26/50) of PwH in the study experience difficulties translating clinical understanding of protection into specific activities in everyday life. Many have developed their own mental models and care adaptations to navigate treatment uncertainy: these seldom match the medical community's view. These mental models of protection among PwH can cause distress and influence behaviour in a way that can limit possibilities, and/or increase risk. There is also a prevalent tension in the strategies PwH have for managing their protection in terms of day-to-day vs. long-term ambitions.ConclusionsThese findings on PwH's experience of treatment uncertainty suggest a need to develop tools and communication materials to help PwH better understand the protection provided by their treatment regimen and what that means practically for everyday life.

scholarly journals “He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care

2020 ◽  
Vol 7 (1) ◽  
pp. 150-157
Author(s):  
Thomas Hughes ◽  
Mikkel Brok-Kristensen ◽  
Yosha Gargeya ◽  
Anne Mette Worsøe Lottrup ◽  
Ask Bo Larsen ◽  
...  
Keyword(s):  
Health Care Professionals ◽  
Large Scale ◽  
Participant Observation ◽  
Field Research ◽  
Ethnographic Study ◽  
Full Potential ◽  
Theory Approach ◽  
Structured Interviews ◽  
Patient Organisations

AbstractBackgroundRecent treatment option advances in haemophilia care have contributed to a discourse of ‘normality’ around the condition, in which people with haemophilia (PwH) are increasingly expected to live ‘normal’ lives unburdened by their condition.AimThe aim of this article is to explore notions of ‘normality’ in the experience of haemophilia across generations. This is one of the main themes identified in a large-scale ethnographic study of the everyday life of PwH, a broad qualitative investigation of beliefs and experiences related to condition, treatment, and personal ways of managing the condition.MethodsThe study used ethnographic research methods. Five haemophilia experts helped frame the research design by contributing historical and disease area context prior to the initiation of field research. PwH were recruited through patient organisations in five European countries (Italy, Germany, Spain, UK and Ireland). During field research, study researchers collected data through 8–12 hours of participant observation, semi-structured interviews, written exercises, facilitated group dialogues, and on-site observations of PwH interactions with friends, family, and health care professionals (HCPs). They also conducted on-site observation at haemophilia treatment centres (HTCs) and HCP interviews. The study employed a multi-tiered grounded theory approach and combined data were analysed using techniques such as inductive and deductive analysis, cross-case analysis, challenges mapping, and clustering exercises. This article explores findings related to the discourse of ‘normality’ and is thus focused on a subset of the data from the study.ResultsFifty-one PwH, aged 1.5 to 82 years, were interviewed and followed in their daily lives. Six treatment centres were visited, and 18 HCPs were interviewed. The study found that a discourse of present day ‘normality’, as compared to a difficult past, is ingrained in the haemophilia community. As a result, unlike most older PwH (40+), younger PwH (under 18) are not always taught to acknowledge the severity of their condition or how to sense bleeds (disease-related embodied knowledge), and risk unknowingly doing long-term damage to their bodies. Twenty-seven per cent (n=7/26) of younger PwH (children, teenagers) in the study were observed or described as engaging in high-risk behaviours in the short term indicating a lack understanding of long-term consequences.ConclusionsThese findings suggest that the discourse of ‘normality’ presents a number of challenges that need to be addressed, namely the potential for younger PwH to be unaware of bleeds and the general underreporting of haemophilia-related complications and limitations. One way forward in realising the full potential of advanced treatment could be to teach young PwH, through evidence-based initiatives, how to develop an embodied sense of their bleeds. Furthermore, if the current state of life with haemophilia is accepted as finally ‘normal’, then progress in further improving care may be stalled. It is important that remaining and new challenges are recognised in order for them to be acted upon.

scholarly journals Treating for stability: an ethnographic study of aspirations and limitations in haemophilia treatment in Europe

2020 ◽  
Vol 7 (1) ◽  
pp. 165-172
Author(s):  
Thomas Hughes ◽  
Mikkel Brok-Kristensen ◽  
Yosha Gargeya ◽  
Anne Mette Worsøe Lottrup ◽  
Ask Bo Larsen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lived Experience ◽  
Health Care Professionals ◽  
Large Scale ◽  
Participant Observation ◽  
Field Research ◽  
Ethnographic Study ◽  
Theory Approach ◽  
Structured Interviews

AbstractBackgroundRecent improvements in approaches to treatment have opened a window of opportunity to redefine and expand the goals of treatment in haemophilia This article explores treatment culture in light of these improvements and its potential impact on the range of possibilitis in the lived experience of haemophilia.AimsThe aim of this article is to further investigate findings related to how health care professionals (HCPs) approach haemophilia treatment and care, one of the main themes identified in an ethnographic study of the everyday life of people with haemophilia (PwH). This large-scale study investigated PwH's beliefs and experiences related to their condition, their treatment, and their personal ways of managing the condition.MethodsThe study used ethnographic research methods. Five haemophilia experts helped frame the research design by providing historical and disease area context prior to the initation of field research. In the field, study researchers collected data through 8–12 hours of participant observation, semi-structured interviews, written exercises, facilitated group dialogues, and on-site observations of the interactions of PwH with friends, family, and HCPs. Study researchers also conducted on-site observation at haemophilia treatment centres (HTCs) and interviewed HCPs. The study employed a multi-tiered grounded theory approach and combined data were analysed using techniques such as inductive and deductive analysis, cross-case analysis, challenge mapping, and clustering exercises. This article explores findings related specifically to how HCPs approach haemophilia treatment and care, and is thus focused on a subset of the data from the study.ResultsFifty-one PwH in Italy, Germany, Spain, UK, and Ireland were interviewed and followed in their daily lives. Eighteen HCPs from seven HTCs were interviewed, and on-site observation was undertaken at six of the HTCs. Most haematologists in the study ‘treated for stability’, rather than to guide PwH to overcome limitations. ‘Treating for stability’ here refers to an approach to haemophilia care that focuses on measuring success in terms of annual bleed rate, instilling a focus on mitigating risk, rather than an approach that allows PwH to overcome the limitations they face due to their condition. However, some haematologists had moved beyond treating for stability to instead treat for possibilities, enabling a better quality of life for PwH.ConclusionsThese results suggest that a culture of ‘treating for stability’ could be limiting progress in expanding the goals of treatment in haemophilia. Expanded metrics of success, more flexible approaches to treatment, and higher ambitions on behalf of PwH may be needed in treatment and care, in order for PwH to fully benefit from treatment advances and to increase their quality of life.

scholarly journals Vývoj a vliv tradiční a moderní hudby v každodennosti Kyrgyzů / The development and influence in traditional and modern music on the everyday life of the Kyrgyz people

2020 ◽  
Vol 2020 (2) ◽  
pp. 3-29
Author(s):  
Miloš Jodas ◽  
Keyword(s):  
Music Education ◽  
Everyday Life ◽  
Participant Observation ◽  
Field Research ◽  
Structured Interviews ◽  
Modern Music ◽  
National Pride ◽  
The Everyday ◽  
Relationship Of ◽  
The Relationship

The principal aim of this paper is to define Kyrgyz music in Kyrgyzstan ethnomusicology in order to assess whether the traditional Kyrgyz music has an essential impact on the identity of the Kyrgyz people and, if so, how does this impact manifest itself. In order to assess the impacts during research, the author was concerned with the influence of urbanization, globalization on processes related to music, the preference of either traditional or modern music, and how music is perceived in a cross-generational perspective. Furthermore, the thesis focuses on related phenomena including folk music instruments of the Kyrgyz or the Kyrgyz storytellers and musicians, who call themselves aqyns and manaschi. Additionally, the relationship of the national pride and music or the most common forms of music education of children and adolescents and its financial and spatial availability are being explored and scrutinized. The unifying theme of this thesis is music in everyday life of the Kyrgyz. The analytical part of this research mainly draws on the results of the author’s month-long field research from 2018 which took place in various diverse regions of Kyrgyzstan. The research includes a questionnaire, overt participant observation, and semi-structured interviews.

Local stakeholders’ narratives about large-scale urban development: The Zhejiang Hangzhou Future Sci-Tech City

Urban Studies ◽  
2019 ◽  
Vol 57 (3) ◽  
pp. 655-671 ◽  
Author(s):  
Valentina Anzoise ◽  
Debora Slanzi ◽  
Irene Poli
Keyword(s):  
Urban Development ◽  
Large Scale ◽  
Agricultural Land ◽  
Topic Model ◽  
Field Research ◽  
High Tech ◽  
Theory Approach ◽  
Social Infrastructure ◽  
Structured Interviews ◽  
City Construction

The development of high-tech industrial parks has transformed the urban landscape in China. However, little is known of the perception of these changes by those affected by their planning and implementation. In order to shed light on this issue, we conducted a study of the Zhejiang Hangzhou Future Sci-Tech City, informed by field research on the environmental and socioeconomic status of the area and semi-structured interviews with stakeholders (residents, workers and government representatives). The data was collected and analysed using a grounded theory approach and modelled via a structural topic model (STM) to identify the most significant issues that people raised in relation to the development of the high-tech industrial park. The main finding of the study is the clear and shared perception of growing prosperity, associated with the improvements to both economic and social infrastructure and the attendant employment and business opportunities. Stakeholders also highlighted improvements to the area’s landscape quality. Nonetheless, stakeholders also identified a set of concerns centred on the threat to cultural identity, the reduction of agricultural land and the diminishing of diversity and flexibility of pathways to urban development. It is these concerns that, in their view, should serve to frame future phases of the Future Sci-Tech City construction.

scholarly journals “What more can we ask for?”: an ethnographic study of challenges and possibilities for people living with haemophilia

2020 ◽  
Vol 7 (1) ◽  
pp. 25-36 ◽  
Author(s):  
Thomas Hughes ◽  
Mikkel Brok-Kristensen ◽  
Yosha Gargeya ◽  
Anne Mette Worsøe Lottrup ◽  
Ask Bo Larsen ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Life Stage ◽  
Ethnographic Study ◽  
Structured Interviews ◽  
Daily Lives ◽  
Treatment Approaches ◽  
Patient Organisations ◽  
The Everyday ◽  
Significant Disease

AbstractBackgroundHaemophilia treatment has improved life expectancy as well as lowered annual bleed rates and treatment burden for recent generations of people with haemophilia (PwH). However, PwH still face significant disease-related challenges on a day-to-day basis.AimsThe aim of the present study was to explore the everyday life of PwH, including their beliefs and experiences related to their condition, their treatment, the challenges they face, and their ways of managing their condition.Materials and methodsPwH were recruited through patient organisations in five European countries (Italy, Germany, Spain, UK and Ireland). Between 8–12 hours were spent with each person with haemophilia and/or their family, to follow them in their daily lives. Patient consultations with health care professionals (HCPs) were also observed when it was agreed in advance by both parties. In addition, HCPs were interviewed and haemophilia treatment centres (HTCs) were visited. Data were collected through semi-structured interviews, written exercises, facilitated group dialogues, and on-site observations of the interactions of PwH with friends, family, and HCPs.ResultsResearch was conducted with 42 people with haemophilia A and 9 people with haemophilia B, between 1.5 and 82 years of age. Interviews often included the wider social ecology of each PwH, including friends, family, and caregivers. In addition, 18 HCPs from seven HTCs were interviewed (on-site observation was carried out at six HTCs). The study found that despite treatment adherence and advances in treatment approaches, many PwH may be suboptimally protected and still experienced regular bleeds, pain and restrictions in their daily life. Moreover, many had built a narrative of normalcy around this way of living with haemophilia, and as such these issues are an expected and neglected reality of living with haemophilia today.ConclusionsThe results of this research indicate the need for more personalised and optimised treatment approaches which are better adapted to personal and life-stage specific challenges of PwH. Such an approach could help reduce challenges for PwH, their families, and the health care system, and further research into such approaches would be valuable.

TOURISM MOBILITY AT THE SUMMER OLYMPIC GAMES RIO 2016

2020 ◽  
Author(s):  
Amanda Cabral ◽  
Carolin Lusby ◽  
Ricardo Uvinha
Keyword(s):  
Olympic Games ◽  
Participant Observation ◽  
Field Research ◽  
Bus Rapid Transit ◽  
Rapid Transit ◽  
Structured Interviews ◽  
Tourist Attractions ◽  
Official Sources ◽  
The Relationship ◽  
The City

Sports Tourism as a segment is growing exponentially in Brazil. The sports mega-events that occurred in the period from 2007 to 2016 helped strengthen this sector significantly. This article examined tourism mobility during the Summer Olympic Games Rio 2016, hosted by the city of Rio de Janeiro, Brazil. This study expands the understanding of the relationship between tourism and city infrastructure, therefore being relevant to academics, professionals of the area and to the whole society due to its multidisciplinary field. The existence of a relationship between means of transportation and the Olympic regions as well as tourist attractions for a possible legacy was observed. Data were collected from official sources, field research and through participant-observation and semi structured interviews. Data were coded and analyzed. The results indicate that the city was overall successful in its execution of sufficient mobility. New means of transportation were added and others updated. BRT's (Bus Rapid Transit) were the main use of mass transport to Olympic sites. However, a lack of public transport access was observed for the touristic sites.

Young Muslim America

2018 ◽  
Author(s):  
Muna Ali
Keyword(s):  
Public Discourse ◽  
Participant Observation ◽  
Cultural Citizenship ◽  
Ethnographic Study ◽  
Muslim American ◽  
Daily Lives ◽  
Community Culture ◽  
Identity Studies ◽  
Anthropology Of Islam ◽  
Dominant Narratives

This book explores the identities, perspectives, and roles of the second and subsequent generations of Muslim Americans of both immigrant and convert backgrounds. As these younger Muslims come of age, and as distant as they are from historical processes that shaped their parents’ generations, how do they view themselves and each other? What role do they play in the current chapter of Islam in a post-9/11 America? Will they be able to cross intra-community divides and play a pivotal role in shaping their community? Culture figures prominently in the discussions about and among Muslims and is centered on four dominant narratives: 1) culture is thought to be the underlying cause of an alleged “identity crisis,” 2) it presumably contaminates a “pure/true” Islam, 3) it is the cause for all that divides Muslim American immigrants and converts, which could be remedied by creating an American Muslim community and culture, and 4) some Americans fear an “Islamization of America” through a Muslim cultural takeover. In this ethnographic study, Muna Ali explores these questions through these four dominant narratives, which are both part of the public discourse and themes that emerged from interviews, a survey, social and traditional media, and participant observation. Situating these questions and narratives in identity studies in a pluralistic yet racialized society, as well as in the anthropology of Islam and in the process and meaning of cultural citizenship, Ali examines how younger Muslims see themselves and their community, how they negotiate fault lines of ethnicity, race, class, gender, and religious interpretation within their communities, and how their faith informs their daily lives and how they envision a future for themselves in post-911 America.

scholarly journals Leadership assumptions on implementation of patient involvement methods

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kathrine Håland Jeppesen ◽  
Kirsten Frederiksen ◽  
Marianne Johansson Joergensen ◽  
Kirsten Beedholm
Keyword(s):  
Health Care ◽  
Organizational Learning ◽  
Health Care Professionals ◽  
Large Scale ◽  
Patient Involvement ◽  
Hospital Setting ◽  
Implementation Process ◽  
University Hospital ◽  
Structured Interviews ◽  
Implementation Processes

Abstract Background From 2014 to 17, a large-scale project, ‘The User-involving Hospital’, was implemented at a Danish university hospital. Research highlights leadership as crucial for the outcome of change processes in general and for implementation processes in particular. According to the theory on organizational learning by Agyris and Schön, successful change requires organizational learning. Argyris and Schön consider that the assumptions of involved participants play an important role in organizational learning and processes. The purpose was to explore leaders’ assumptions concerning implementation of patient involvement methods in a hospital setting. Methods Qualitative explorative interview study with the six top leaders in the implementation project. The semi-structured interviews were conducted and analyzed in accordance with Kvale and Brinkmanns’ seven stages of interview research. Result The main leadership assumptions on what is needed in the implementation process are in line with the perceived elements in organizational learning according to the theory of Argyris and Schön. Hence, they argued that implementation of patient involvement requires a culture change among health care professionals. Two aspects on how to obtain success in the implementation process were identified based on leadership assumptions: “The health care professionals’ roles in the implementation process” and “The leaders’ own roles in the implementation process”. Conclusion The top leaders considered implementation of patient involvement a change process that necessitates a change in culture with health care professionals as crucial actors. Furthermore, the top leaders considered themselves important facilitators of this implementation process.

scholarly journals COMPREHENSIVE MEDICATION MANAGEMENT SERVICES IN A BRAZILIAN SPECIALITY PHARMACY: A QUALITATIVE ASSESSMENT

2017 ◽  
Vol 9 (3) ◽  
pp. 227 ◽  
Author(s):  
Kirla Barbosa Detoni ◽  
Mariana Martins Gonzaga Do Nascimento ◽  
Isabela Viana Oliveira ◽  
Mateus Rodrigues Alves ◽  
Manoel Machuca GonzÁles ◽  
...  
Keyword(s):  
Participant Observation ◽  
Patient Flow ◽  
Medication Management ◽  
Implementation Process ◽  
Ethnographic Study ◽  
Qualitative Assessment ◽  
Healthcare Team ◽  
Structured Interviews ◽  
Eligibility Criteria ◽  
Manager Support

Objective: To understand and describe the implementation process of a comprehensive medication management (CMM) service in a public speciality pharmacy in Brazil.Methods: Ethnographic study conducted over 17 mo (September 2014 to February 2016) in a public speciality pharmacy. Semi-structured interviews were conducted with twelve participants. Notes on field journals, resulting from participant observation conducted by the two pharmacists directly responsible for the service implementation, were also used as a source of data.Results: Ten important conditions to improve the success of CMM service implementation were identified: manager support; evaluation of physical and material resources; evaluation of human resources practitioners’ characteristics and knowledge about the theoretical framework of CMM services; time dedicated to CMM services; redefining the work process; defining patient eligibility criteria to CMM service; defining patient flow to CMM service; communication with healthcare team; integration with the staff; and marketing the service internally.Conclusion: The results unveiled by this article can be used by pharmacists and managers as a tool to optimize the implementation of CMM services in different healthcare settings. These conditions do not consist the only aspects necessary to ensure the success of the service; however, they can contribute to optimize the implementation process of the practice

Integrating corporate social responsibility into efforts to realize millennium development goals

2014 ◽  
Vol 10 (4) ◽  
pp. 314-333 ◽  
Author(s):  
David Katamba ◽  
Cedric Marvin Nkiko ◽  
Charles Tushabomwe-Kazooba ◽  
Sulayiman Babiiha Mpisi ◽  
Imelda Kemeza ◽  
...  
Keyword(s):  
Corporate Social Responsibility ◽  
Social Responsibility ◽  
Millennium Development Goals ◽  
Participant Observation ◽  
Theory Approach ◽  
Structured Interviews ◽  
Content Type ◽  
Development Goals ◽  
The Government ◽  
Corporate Social

Purpose – The purpose of this paper is to present corporate social responsibility (CSR) as an alternative roadmap to accelerating realization of Millennium Development Goals (MDGs) in Uganda, even after 2015. Design/methodology/approach – Using a mixed research methodology, this research documented CSR activities of 16 companies operating in Uganda. Data collection was guided by quantitative and qualitative methodologies (semi-structured interviews with CSR managers, plus non-participant observation of CSR activities and projects linked with MDGs). Triangulation was used to ensure credibility and validity of the results. For data analysis, the authors followed a three-stepwise process, which helped to develop a framework within which the collected data could be analyzed. For generalization of the findings, the authors were guided by the “adaptive theory approach”. Findings – Uganda will not realize any MDGs by 2015. However, CSR activities have the potential to contribute to a cross-section of various MDGs that are more important and relevant to Uganda when supported by the government. If this happens, realization of the MDGs is likely to be stepped up. CSR's potential contributions to the MDGs were found to be hindered by corruption and cost of doing business. Lastly, MDG 8 and MDG 3 were perceived to be too ambiguous to be integrated into company CSR interventions, and to a certain extent were perceived to be carrying political intentions which conflict with the primary business intentions of profit maximization. Practical implications – Governments in developing countries that are still grappling with the MDGs can use this research when devising collaborations with private-sector companies. These documented CSR activities that contribute directly to specific MDGs can be factored into the priority public-private partnership arrangements. Private companies can also use these findings to frame their stakeholder engagement, especially with the government and also when setting CSR priorities that significantly contribute to sustainable development. Originality value – This research advances the “Post-2015 MDG Development Agenda” suggested during the United Nations MDG Summit in 2010, which called for academic and innovative contributions on how MDGs can be realized even after 2015.

Sign in / Sign up

Export Citation Format

Share Document