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 “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 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.

Dementia from the inside: how people with early-stage dementia evaluate their quality of life

2005 ◽  
Vol 25 (2) ◽  
pp. 197-214 ◽  
Author(s):  
TOWAKO KATSUNO
Keyword(s):  
Quality Of Life ◽  
Health Care Professionals ◽  
Early Stage ◽  
Structured Interviews ◽  
Psychosocial Wellbeing ◽  
People With Dementia ◽  
Quality Of Life Scale ◽  
Quality Of Life Index ◽  
Item Quality

The purposes of this study were to explore the self-rated and objectively measured quality of life of people with early-stage dementia and to describe their personal experiences and reactions to the negative public view of dementia. Information was collected from 23 participants who lived in a mid-western United States metropolitan area. Self-ratings were collected by semi-structured and structured interviews, and the objective measures were the Quality of Life Index (QLI) and the Single Item Quality of Life Scale (SIQLS). It was found that 21 of the participants perceived their current QOL as ‘good’ or better, and that the mean scores for the QLI and the SIQLS were 22.8 and 7.3 respectively. Triangulation of the subjective and objective data established their congruence. The QLI scores suggested that people with early-stage dementia often perceived their current life as good and that the participants were as satisfied with their life as the general population. Their accounts also revealed that many had experienced stigma and that this appreciably affected their psychosocial wellbeing. The findings of this study provide new insights into the ways in which health-care professionals and the general public can and should view and treat people with dementia.

Boys and parents’ perceptions of living with haemophilia and an inhibitor

2013 ◽  
Vol 1 (1) ◽  
pp. 17-22
Author(s):  
Anica Phillott
Keyword(s):  
Quality Of Life ◽  
Coping Mechanisms ◽  
Theory Approach ◽  
Structured Interviews ◽  
Inhibitor Development ◽  
The Past ◽  
Published Evidence ◽  
Perceived Quality Of Life ◽  
Qualitative Research Methodology

Abstract This study examined the perception of the quality of life in a small group of boys (aged 8-15) who have severe haemophilia and have also developed inhibitors and their parents. The study design was a qualitative research methodology using a phenomenology theory approach in order to gain perspectives from participants in a series of semi-structured interviews. The study showed that inhibitor development had an impact on the perceived quality of life of these boys and their families and in so doing threatened the coping mechanisms that had worked effectively for them in the past. Although there is adequate awareness among haemophilia treaters of the psychosocial impact of inhibitor development on family life, this may not always be seen as a priority when managing these boys. The study also identified gaps in the published evidence as well as scope for future study. Commentary, J Haem Pract 2014;1(1):23.

scholarly journals Lived Experience of Patients Undergoing Hemodialysis: Quality of Life Perspective

2016 ◽  
Vol 3 (2) ◽  
Author(s):  
Mrs. Rohini. T ◽  
Dr. Punitha. V. Ezhilarasu
Keyword(s):  
Quality Of Life ◽  
Lived Experience ◽  
Structured Interviews ◽  
Van Manen ◽  
Related Quality ◽  
Health Related ◽  
Stage Renal Disease ◽  
End Stage ◽  
Esrd Patients

There is growing recognition of Health-Related Quality of Life (HRQOL) issues in End Stage Renal Disease (ESRD) patients undergoing Hemodialysis (HD). The aim of the present study was to explore the lived experience of Quality of Life (QOL) among patients undergoing Hemodialysis. The study involved a qualitative approach that used an interpretive hermeneutic phenomenology based on Van Manen’s method. The sample included seven patients undergoing Hemodialysis in two selected hospitals at Ernakulam district in Kerala. They were recruited by purposive sampling. Data were collected using semi-structured interviews. The thematic analysis followed the six steps delineated by Max Van Manen and four themes emerged. They were crestfallen life (3 sub themes; hard pressed life, deserted life and abounding losses); support and comfort; accompanying death and unfulfilled wishes. The findings shed light on the lived experience of QOL that has not yet been researched in an Indian scenario. The generated knowledge can be used by health professionals including nurses to help patients undergoing HD lead a life with better quality of life.

scholarly journals FOOD AND PHYSICAL ACTIVITY: an ethnographic study

2020 ◽  
Vol 6 (4) ◽  
pp. a12en
Author(s):  
Jeferson Bertolini ◽  
Carmen Rial
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Daily Life ◽  
Participant Observation ◽  
Well Being ◽  
Ethnographic Study ◽  
Fitness Center ◽  
The Public ◽  
Health And Well Being

This article presents the results of a study with supermarket customers and fitness center users. The research shows that the daily life of these individuals (here called "the public") contemplates elements of the mediatic discourse about health and well-being. In the perspective of this study, this discourse is compatible with biopower, the power technique that seeks to create economically active bodies. The work uses participant observation. It was carried out in Santa Catarina, State recognized by the indices of human development and quality of life. The manuscript concludes that among the public, elements of the mediatic discourse appear in daily practices that result in an efficient body, or body conomically active.

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 Perceived changes to quality of life indicators following a physical activity intervention for recovering cancer patients: A qualitative study.

2016 ◽  
Vol 4 (2) ◽  
pp. 305
Author(s):  
Martyn Queen ◽  
Saul Bloxham ◽  
Phil Brown ◽  
Melissa Coyle ◽  
Ben Jane
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Qualitative Study ◽  
Cancer Patients ◽  
Psychological Health ◽  
Physical Activity Intervention ◽  
Chronic Fatigue ◽  
Theory Approach ◽  
Structured Interviews

The aim of this study was to examine the perceived changes to the quality of life (QoL) for a group of recovering cancer patients, following 6 months of physical activity.Background Evidence suggests that physical activity can improve the QoL of recovering cancer patients, reducing many of the side-effects of cancer and its related treatments, including depression, anxiety, chronic fatigue and improve physical and psychological health. Method A qualitative study with 14 mixed site cancer patients aged 43-70 (12 women, 2 men). The intervention was in 2 parts the first part was an 8-week physical activity programme, the second part related to a period of non-supervised, physical activity for 4 months (6 months in total). The Programme took place at a university in the South West of England. Semi-structured interviews with patients took place 3 times over 6 months. A grounded theory approach was used to analyse the data.Results We found that prior to the 6-month physical activity intervention many of the patients were anxious about being able to complete the initial 8 week programme. Anxieties related to low self-esteem and the chronic fatigue resulting from their cancer treatment. Consequently several patients expressed concerns about their ability to help themselves self-manage their recovery through physical activity. On completion of the intervention the majority of patients reported improvements in their perceived QoL relating to their ability to self-manage, their self-efficacy, energy levels, along with decreases in chronic fatigue.Conclusion Our study has provided valuable insights into how the perceived QoL of a group of recovering cancer patients can be improved through a combined 6-month period of supervised and independent physical activity. These findings serve as further evidence of the effectiveness of a person centred healthcare approach for recovering cancer patients.

Knowledge Co-Creation and Co-Created Value in the Service for the Elderly

2016 ◽  
Vol 7 (2) ◽  
pp. 28-39
Author(s):  
Bach Ho Quang ◽  
Kunio Shirahada
Keyword(s):  
Quality Of Life ◽  
Support Services ◽  
Participant Observation ◽  
Well Being ◽  
The Elderly ◽  
Theory Approach ◽  
Buying Behavior ◽  
Types Of Knowledge ◽  
Grounded Theory Approach

The number of the elderly who face difficulties in their buying behavior of their daily life is increasing, in Japan. A service for the elderly such as services for supporting buying behavior of the elderly is needed. The purpose of this study is to identify knowledge co-creation in the service for the elderly and how co-created knowledge enables the elderly to enhance their quality of life as a well-being oriented value. The authors conducted qualitative research through a participant observation of support services regarding the buying behavior of the elderly and analyzed the data by a grounded theory approach. As a result, this study identified that there are three types of knowledge co-creation in support services: regional state, how a commodity is consumed, and consumer characteristics. This study also identified that there are three well-being oriented values co-created in support services: enhancement of the quality of life of the elderly, employee satisfaction, and accumulation of well-being provision skills.

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