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.

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.

scholarly journals Women, Exercise, and Eating Disorder Recovery: The Normal and the Pathological

2021 ◽  
pp. 104973232199204
Author(s):  
Hester Hockin-Boyers ◽  
Megan Warin
Keyword(s):  
Health Care ◽  
Eating Disorder ◽  
Affect Regulation ◽  
Health Care Professionals ◽  
Value Systems ◽  
Structured Interviews ◽  
Data Set ◽  
The United Kingdom ◽  
Theoretical Frame ◽  
Intensity Of Exercise

The appropriate form, regularity, and intensity of exercise for individuals recovering from eating disorders is not agreed upon among health care professionals or researchers. When exercise is permitted, it is that which is mindful, embodied, and non-competitive that is considered normative. Using Canguilhem’s concepts of “the normal and the pathological” as a theoretical frame, we examine the gendered assumptions that shape medical understandings of “healthy” and “dysfunctional” exercise in the context of recovery. The data set for this article comes from longitudinal semi-structured interviews with 19 women in the United Kingdom who engaged in weightlifting during their eating disorder recovery. We argue that women in recovery navigate multiple and conflicting value systems regarding exercise. Faced with aspects of exercise that are pathologized within the eating disorder literature (such as structure/routine, body transformations, and affect regulation), women re-inscribe positive value to these experiences, thus establishing exercise practices that serve them.

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 Surveillance, anticipation and firefighting: Perspectives of patient safety from a New Zealand case study

2020 ◽  
Author(s):  
J Wailling ◽  
Brian Robinson ◽  
M Coombs
Keyword(s):  
Health Care ◽  
Patient Safety ◽  
New Zealand ◽  
Health Care Professionals ◽  
Nuclear Power ◽  
High Reliability ◽  
Health Care Systems ◽  
Tertiary Hospital ◽  
Structured Interviews

© 2018 John Wiley & Sons Ltd Aim: This study explored how doctors, nurses and managers working in a New Zealand tertiary hospital understand patient safety. Background: Despite health care systems implementing proven safety strategies from high reliability organisations, such as aviation and nuclear power, these have not been uniformly adopted by health care professionals with concerns raised about clinician engagement. Design: Instrumental, embedded case study design using qualitative methods. Methods: The study used purposeful sampling, and data was collected using focus groups and semi-structured interviews with doctors (n = 31); registered nurses (n = 19); and senior organisational managers (n = 3) in a New Zealand tertiary hospital. Results: Safety was described as a core organisational value. Clinicians appreciated proactive safety approaches characterized by anticipation and vigilance, where they expertly recognized and adapted to safety risks. Managers trusted evidence-based safety rules and approaches that recorded, categorized and measured safety. Conclusion and Implications for Nursing Management: It is important that nurse managers hold a more refined understanding about safety. Organisations are more likely to support safe patient care if cultural complexity is accounted for. Recognizing how different occupational groups perceive and respond to safety, rather than attempting to reinforce a uniform set of safety actions and responsibilities, is likely to bring together a shared understanding of safety, build trust and nurture safety culture.

scholarly journals Knowledge and practices of Primary Care professionals on diabetic neuropathy: study of social representations

2021 ◽  
Vol 74 (1) ◽  
Author(s):  
Erlon Gabriel Rego de Andrade ◽  
Ivaneide Leal Ataíde Rodrigues ◽  
Sidney de Assis da Serra Braga ◽  
Laura Maria Vidal Nogueira ◽  
Bruna Alessandra Costa e Silva Panarra ◽  
...  
Keyword(s):  
Diabetic Neuropathy ◽  
Health Care Professionals ◽  
Social Representations ◽  
Family Health ◽  
Standard Of Care ◽  
Structured Interviews ◽  
Disease Treatment ◽  
Daily Lives ◽  
Qualitative Descriptive ◽  
Primary Care Professionals

ABSTRACT Objectives: to analyze the knowledge and practices of Primary Health Care professionals about diabetic neuropathy through their social representations. Methods: a qualitative, descriptive study, anchored in the procedural aspect of the Theory of Social Representations. It was carried out in four Family Health Units in Belém-Pará, with 31 professionals from four health teams. Data were produced by individual semi-structured interviews, and the corpus was submitted to content analysis. Results: two thematic categories were defined, showing the participants’ understanding and imagination about neuropathy, as well as the biopsychosocial repercussions of this complication in patients’ daily lives. The multidisciplinary practices developed in the context of disease treatment/prevention and the consequences of this performance were also shown. Final Considerations: professionals’ representations are anchored in neuropathy occurrence due to the deficient standard of care for themselves by patients, which results in the team’s surpassing care attitude as an alternative to illness’ challenges.

scholarly journals More than a Game: Racecraft and the Adaptation of “Race” in Live Action Role Play

Humanities ◽  
2020 ◽  
Vol 9 (4) ◽  
pp. 124
Author(s):  
Samantha Eddy
Keyword(s):  
Role Play ◽  
Social Process ◽  
Double Standard ◽  
Ethnographic Study ◽  
Structured Interviews ◽  
The Everyday ◽  
Role Players ◽  
Definition Of ◽  
Live Action

Live action role players make the imaginative worlds of tabletop games manifest through collaborative storytelling and embodied play. Escaping the everyday, these communities could radically reimagine culture and challenge oppressive ideologies. Instead, they are deeply invested in essentializing “race”. I conducted a three-year ethnographic study alongside 20 semi-structured interviews to explore racecraft in live action role play. Supporting the groundbreaking work of Karen and Barbara Fields, I find that racecraft is a social process—continually negotiated and maintained through intimate interactions and community exchanges. Through this process, the definition of “race” is continually adapted while belief in this category remains entrenched. When participants confront racist stereotypes, practitioners coerce marginalized members into a false exchange. These members are encouraged to share experiences detailing the damage of problematic representations. Practitioners then reduce these experiences to monolithic understandings of “race”. In this insidious manner, anti-racist confrontations become fodder for racecraft. Complicating this further, patterned racism is characterized as an inborn quality of whiteness, minimizing practitioners’ accountability. Responsibility is then shifted onto marginalized participants and their willingness to engage in “racial” education. This trap is ingrained in the double standard of racism, adapting “race” such that whiteness is unrestricted by the monolithic definitions applied to those outside this category.

scholarly journals Where else would I look for it? A five-country qualitative study on purposes, strategies, and consequences of online health information seeking

2019 ◽  
Vol 8 (1) ◽  
Author(s):  
Nicola Diviani ◽  
Eva Haukeland Fredriksen ◽  
Corine S. Meppelink ◽  
Judy Mullan ◽  
Warren Rich ◽  
...  
Keyword(s):  
Health Care ◽  
Lived Experience ◽  
Health Information ◽  
Health Care Professionals ◽  
Information Seeking ◽  
The Body ◽  
Online Health Information ◽  
Structured Interviews ◽  
Ehealth Literacy ◽  
Digital Divides

Background. Online health information (OHI) is widely available and consulted by many people in Western countries to gain health advice. The main goal of the present study is to provide a detailed account of the experiences among people from various demographic backgrounds living in high-income countries, who have used OHI. Design and methods. Thematic analysis of 165 qualitative semi-structured interviews conducted among OHI users residing in Australia, Israel, the Netherlands, Norway, and Switzerland was performed. Results. The lived experience of people using OHI seem not to differ across countries. The interviews show that searches for OHI are motivated from curiosity, sharing of experiences, or affirmation for actions already taken. Most people find it difficult to appraise the information, leading them to cross-check sources or discuss OHI with others. OHI seems to impact mostly some specific types of health behaviors, such as changes in diet or physical activity, while it only plays a complementary role for more serious health concerns. Participants often check OHI before seeing their GP, but are reluctant to discuss online content with health care personnel due to expected negative reception. Conclusions. This study adds to the body of knowledge on eHealth literacy by demonstrating how OHI affects overall health behavior, strengthens patients’ ability to understand, live with, and prepare themselves for diverse health challenges. The increasing digitalization of health communication and health care calls for further research on digital divides and patient-professional relations. Health care professionals should acknowledge OHI seeking and engage in discussions with patients to enable them to appreciate OHI, and to support shared decision making in health care. The professionals can utilize patient’s desire to learn as a resource for health prevention, promotion or treatment, and empowerment.

scholarly journals The psychosocial effects of being quarantined following exposure to COVID-19: A qualitative study of Lebanese health care workers

2020 ◽  
Vol 66 (6) ◽  
pp. 560-565 ◽  
Author(s):  
Mirna Fawaz ◽  
Ali Samaha
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Health Care Workers ◽  
Health Care Professionals ◽  
Control Measures ◽  
Mental Wellbeing ◽  
Care Providers ◽  
Structured Interviews ◽  
Psychosocial Effects ◽  
Care Workers

Background: Since the outbreak of the novel Coronavirus (COVID-19), health care professionals in Lebanon have been diligently serving as the frontline of defense. In the light of challenging economic and political circumstances, putting their community wellbeing as a priority, and abiding by quarantine and strict infection control measures, health care professionals risk both their physical and mental wellbeing. Objective: The aim of this study is to explore the psychosocial effects of being quarantined following exposure to COVID-19 among Lebanese health care professionals. Method: An exploratory qualitative research design was employed, where semi-structured interviews were carried out involving a sample of 13 Lebanese health care providers working at various COVID-19 units. Results: The qualitative analysis has revealed four themes namely ‘Fears of contracting and spreading the virus’, ‘Conflict between professional duty and family obligation’, ‘Stigma of being infected’, and ‘Inadequate or inaccurate information’. Conclusion: COVID-19 quarantine has been posing intense psychological challenges among Lebanese health care workers which are worsened at times by the economic instability; thus, health care policymakers are urged to take proper action nationwide to alleviate longlisting implications and support the health care providers in fulfilling their mission.

scholarly journals Patients’ Needs Regarding Anxiety Management in Palliative Cancer Care: A Qualitative Study in a Hospice Setting

2019 ◽  
Vol 36 (11) ◽  
pp. 947-954 ◽  
Author(s):  
Danielle Zweers ◽  
Alexander de Graeff ◽  
Jette Duijn ◽  
Everlien de Graaf ◽  
Petronella O. Witteveen ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Symptom Management ◽  
World Health ◽  
Future Research ◽  
Common Symptom ◽  
Structured Interviews ◽  
Open Communication ◽  
Hospice Patients ◽  
Health Organization

Introduction: Anxiety is a common symptom in the palliative phase, and symptom management depends on the competencies of individual professionals. This study aims to get insight into the needs of anxious hospice patients with advanced cancer regarding support. Method: Semi-structured interviews were performed in admitted hospice patients with cancer. Patients admitted from May 2017 till May 2018 were eligible whether or not they were anxious. Interviews were analyzed and coded within predefined topics. Results: Fourteen patients were included: 10 females, median age 71, and median World Health Organization performance score 3. Most patients were highly educated. Thirteen patients were interviewed within 6 months before death. Information, open communication, sense of control, safety, adequate symptom management, and respect for patients’ coping strategy were the 6 main expressed needs. Conclusion: Assessing patients’ needs regarding anxiety provided important angles where health-care professionals can make a difference in order to support anxious patients in their final stage of life to realize tailored palliative care. Future research should focus on the development of a systematic approach for health-care professionals to manage anxiety in daily care of terminal patients.

Sign in / Sign up

Export Citation Format

Share Document